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Volume <strong>106</strong>, Number 3<br />
ISSN 0042-8639<br />
Winter 2006<br />
The Volta Review<br />
Alexander Graham Bell Association<br />
for the Deaf and Hard of Hearing<br />
Early Hearing Detection and Intervention:<br />
Trends, Progress and Challenges<br />
Edited by<br />
Melody Harrison, Ph.D.
Volume <strong>106</strong>, Number 3<br />
ISSN 0042-8639<br />
Winter 2006<br />
The Volta Review<br />
Alexander Graham Bell Association<br />
for the Deaf and Hard of Hearing<br />
Early Hearing Detection and Intervention:<br />
Trends, Progress and Challenges<br />
Edited by<br />
Melody Harrison, Ph.D.
The Volta<br />
Review<br />
Early Hearing Detection and<br />
Intervention: Trends, Progress<br />
and Challenges<br />
233 Foreword<br />
Melody Harrison, Ph.D.<br />
237 Early Intervention for Children with Permanent Hearing Loss:<br />
Finishing the EHDI Revolution<br />
Karl R. White, Ph.D.<br />
259 Statewide Collaboration in the Delivery of EHDI Services<br />
Joni Alberg, Ph.D., Kathryn Wilson, M.A., CCC-SLP, Cert. AVT, and<br />
Jackson Roush, Ph.D., CCC-A<br />
275 Family Empowerment: Supporting Language Development in<br />
Young Children Who Are Deaf or Hard of Hearing<br />
Jean L. DesJardin, Ph.D.<br />
299 Management of Young Children with Unilateral Hearing Loss<br />
Sarah McKay, Au.D.<br />
Volume <strong>106</strong>, Number 3<br />
ISSN 0042-8639<br />
Winter 2006<br />
Organized in 1890 to encourage the teaching of speech, speechreading and the use of residual hearing to<br />
people who are deaf or hard of hearing, the Alexander Graham Bell Association for the Deaf and Hard of<br />
Hearing (AG Bell) welcomes to its membership all who are interested in improving educational, professional<br />
and vocational opportunities for people who are deaf or hard of hearing. Affiliated with AG Bell are the<br />
Parent Section, the Deaf and Hard of Hearing Section and the International Professional Section.<br />
321 Early Spanish Speech Acquisition Following Cochlear Implantation<br />
Jan Allison Moore, Ph.D., Scott Prath, M.A., and Adrianne Arrieta, M.A.<br />
343 Bilateral Cochlear Implantation in Children: Experiences<br />
and Considerations<br />
Andrea Bohnert, M.T.A.-F., Vera Spitzlei, Dipl.-Ing., Karl L. Lippert, Ph.D.,<br />
Dipl.-Ing., and Annerose Keilmann, M.D.
365 Early Cochlear Implant Experience and Emotional Functioning<br />
During Childhood: Loneliness in Middle and Late Childhood<br />
Efrat A. Schorr, Ph.D.<br />
381 Early Hearing Detection and Intervention in Developing<br />
Countries: Current Status and Prospects<br />
Bolajoko O. Olusanya, M.D., M.Phil.<br />
419 Beyond Early Intervention: Providing Support to Public<br />
School Personnel<br />
Kathryn Wilson, M.A., CCC-SLP, Cert. AVT<br />
433 Author Index for Volume <strong>106</strong><br />
Permission to Copy: The Alexander Graham Bell Association for the Deaf and Hard of<br />
Hearing, as copyright owner of this journal, allows single copies of an article to be made for<br />
personal use. This consent does not extend to posting on Web sites or other kinds of<br />
copying, such as copying for general distribution, for advertising or promotional purposes,<br />
for creating new collective works of any type, or for resale without the express written<br />
permission of the publisher. For more information, contact AG Bell at 3417 Volta Place,<br />
NW, Washington, DC 20007, e-mail editor@agbell.org, or call 202/337-5220 (voice) or<br />
202/337-5221 (TTY).<br />
232 Table of Contents
The Volta Review, Volume <strong>106</strong>(3) (monograph), 233-235<br />
Foreword<br />
Melody Harrison, Ph.D.<br />
When I began working at the University of North Carolina over 25 years<br />
ago, the first child I served in our university clinic was an 11-month-old infant<br />
who had a severe-to-profound hearing loss. At that time, she was the youngest<br />
child with whom I had ever worked. I was thrilled to have the opportunity<br />
to provide speech and language services to a young mother and a baby who<br />
wasn’t even old enough to qualify as a toddler!<br />
Today in many parts of the world, including the United States, identification<br />
of hearing loss at age 10 months and fitting with hearing aids at 11<br />
months would be considered woefully late. Between 1993 and 2005, the percentage<br />
of newborns in the United States whose hearing was screened at birth<br />
rose from 3 to 93 percent and the age at which hearing loss was confirmed<br />
dropped dramatically. Digital hearing aids became available and cochlear<br />
implant technology improved. Equally significant was the development of a<br />
procedure for fitting hearing aids to the unique properties of a child’s small<br />
but growing ears.<br />
The combination of early identification and technological innovation has<br />
provided us with the tools to revolutionize long-term outcomes for children<br />
who are deaf or hard of hearing. Yet, we are faced with challenges few<br />
professionals could have imagined 15 years ago. Although the benefits of<br />
early intervention are gaining increasing acceptance around the world, in<br />
areas where resources are meager, the age of identification is measured in<br />
years rather than months and intervention is not at all early. For some children,<br />
it is nonexistent. In those places, we must think collectively and creatively<br />
about how to use current technology in a manner that meshes with the<br />
cultural and economic realities of a specific region.<br />
Even prosperous countries such as the United States experience the significant<br />
strains early identification has placed on early intervention services.<br />
Access to qualified providers for families and children with hearing loss<br />
continues to be a major challenge. Few professionals have been adequately<br />
prepared to work with children ages birth to 3, and the majority have not<br />
been educated in methodologies that promote access to spoken language. In<br />
fact, many professionals who work under the direction of a state’s Part C<br />
early intervention program have no educational background in childhood<br />
hearing loss at all. Further, there is little research to guide professionals to<br />
Foreword 233
serve children with a mild, moderate or unilateral hearing loss—all which can<br />
now be identified shortly after birth. As increasing numbers of children are<br />
identified with hearing loss at earlier ages, the number of children referred for<br />
services continues to steadily rise, creating further demands for qualified<br />
service providers. Although the challenges related to service coordination can<br />
appear insurmountable, the potential for making an extraordinary difference<br />
in the lives of young children with hearing loss has never been greater.<br />
This monograph on early intervention unites contributors from around the<br />
world, from Nigeria to Israel, Germany and the United States, and offers a<br />
range of perspectives and approaches to the conundrums that, to some degree<br />
or another, we all face. We begin our journey in the United States with Karl<br />
White, Ph.D., director of the National Center for Hearing Assessment and<br />
Management, who discusses potential solutions for the challenges faced by<br />
early intervention service providers across the country following wider<br />
implementation of newborn hearing screening.<br />
Next, Joni Alberg, Ph.D., executive director of BEGINNINGS for Parents of<br />
Children Who Are Deaf and Hard of Hearing, Inc., and her colleagues outline<br />
a model of collaboration among state agencies to benefit children and families<br />
in North Carolina.<br />
Jean Desjardin, Ph.D., advanced research associate in the Children’s Research<br />
and Evaluation (CARE) Center at the House Ear Institute, explores the<br />
relationship between parents’ sense of their own competence to guide their<br />
child’s early development and how it influences their child’s acquisition of<br />
spoken language.<br />
In the past, many children with unilateral hearing loss were identified only<br />
after they had begun to struggle academically during their school years.<br />
Newborn hearing screening now makes it possible to identify this population<br />
at birth. Sarah McKay, Au.D., senior audiologist at the Center for Childhood<br />
Communication at The Children’s Hospital of Philadelphia, focuses on the<br />
issues and challenges associated with managing unilateral hearing loss in<br />
very young children.<br />
For many years, bilingual learners in the United States were located almost<br />
solely along the southwestern border of the country. Today, none of the 48<br />
contiguous states is completely unilingual. Jan Moore, Ph.D., and colleagues<br />
present a case study of the spoken Spanish-language development of a child<br />
who received a cochlear implant at age 20 months. The case study is designed<br />
to expand on existing knowledge regarding Spanish language development<br />
among at-risk children to improve services for this population.<br />
Next, Andrea Bohnert, M.T.A.-F., and colleagues at the University Clinic<br />
Mainz, Germany, share their experiences with bilateral implantation and auditory<br />
development among 41 young children. The article also discusses several<br />
factors that must be considered when evaluating children for bilateral<br />
implants.<br />
Efrat Schorr, Ph.D., a postdoctoral fellow at the Gonda Brain Research<br />
234 Foreword
Center at Bar Ilan University, Ramat Gan, Israel, investigates the relationship<br />
between early cochlear implantation and its effects on loneliness in middle<br />
and late childhood.<br />
London-based Bolajoko Olusanya, M.D., M.Phil., explores different approaches<br />
to culturally appropriate early identification and intervention in<br />
developing countries as well as key challenges and possible approaches to<br />
building service capacity.<br />
Our journey ends in the Unites States, where Kathryn Wilson, M.A., CCC-<br />
CLP, Cert. AVT, director of the Resource Support Program at the Office of<br />
Education Services for the North Carolina Department of Health and Human<br />
Services, transitions the reader out of early intervention into the realm of<br />
public school. Wilson’s article describes a service model used in North Carolina<br />
to support public school teachers serving children who have transitioned<br />
from early intervention services.<br />
In the spirit of the unique cultural, governmental and professional frameworks<br />
within which we all work, the articles in this monograph issue are<br />
intended to prompt us to think critically about each topic and ask, “What can<br />
I implement in my setting?” “What theories and practices do I question?”<br />
“What excites me?” My hope is that each of you will read with a critical mind<br />
and open heart as we move forward in our shared quest to provide the very<br />
best to each child and family we serve.<br />
Melody Harrison, Ph.D.<br />
Foreword 235
The Volta Review, Volume <strong>106</strong>(3) (monograph), 237-258<br />
Early Intervention for<br />
Children with Permanent<br />
Hearing Loss: Finishing the<br />
EHDI Revolution<br />
Karl R. White, Ph.D.<br />
The value of identifying permanent hearing loss during the first few months of life<br />
and providing effective treatment to ameliorate or even eliminate the negative consequences<br />
has been recognized for many decades. Unfortunately, improvements in<br />
achieving this goal were very gradual until the early 1990s. At that time, the combination<br />
of technological advances in screening and diagnostic equipment and hearing<br />
technologies created a revolution in our ability to identify and provide<br />
intervention to children with permanent hearing loss during the first few months of<br />
life.<br />
Evidence continues to accumulate that for those children who are identified early<br />
and provided with appropriate hearing technologies and early intervention, dramatic<br />
progress is often possible. However, there are many infants and young children who<br />
are not yet benefiting from this revolution because timely and appropriate early<br />
intervention services are not available in many parts of the country. Part of the reason<br />
why so many children are missing out on these benefits is there has not been sufficient<br />
coordination between the state Early Hearing Detection and Intervention (EHDI)<br />
programs and the federally sponsored Infant and Toddler programs for which states<br />
receive partial funding under Part C of the Individuals with Disabilities Improvement<br />
Act of 2004. This article discusses how the early intervention aspects of EHDI<br />
programs could be improved by closer attention to the components required under<br />
Part C of eligibility criteria, child-find and referral systems, preservice and inservice<br />
personnel development, coverage of hearing aids and public awareness programs.<br />
Introduction<br />
At the beginning of this decade, the U.S. Department of Health and Human<br />
Services issued national health objectives (Healthy People 2010, 2000) that<br />
Karl White, Ph.D., is a professor of psychology at Utah State University and the founding<br />
director of the National Center for Hearing Assessment and Management (NCHAM).<br />
Finishing the EHDI Revolution 237
identified the most significant preventable threats to the health of people in<br />
the United States and established national goals to improve people’s health<br />
and well-being. Developed by a broad array of stakeholders and using the<br />
best scientific evidence available, the objectives in Healthy People 2010 were<br />
predicated on the simple but powerful idea that broad awareness of understandable<br />
health objectives will enable various stakeholders to work together<br />
to achieve important outcomes.<br />
The fact that early identification of permanent hearing loss in children 1 was<br />
included as one of the goals in this high-visibility national plan is an important<br />
indication of how thinking about early identification and intervention<br />
with children who are deaf or hard of hearing (referred to hereafter as DHH<br />
children) has changed over the last 20 years. Goal 28-11 from Healthy People<br />
2010 states, “Increase the proportion of newborns who are screened for hearing<br />
loss by age 1 month, have audiologic evaluation by age 3 months, and are<br />
enrolled in appropriate intervention services by age 6 months.” The idea<br />
behind this goal is not new, but the belief that it could be achieved is a<br />
significant change in what people have believed for the past hundred years.<br />
Some of the first to advocate for systematic and sustained efforts to identify<br />
DHH children during the first few months of life were Ewing and Ewing<br />
(1944), when they called for the:<br />
need to study further and more critically methods of testing hearing in<br />
young children . . . during this first year the existence of deafness needs to<br />
be ascertained . . . training needs to be begun at the earliest age that the<br />
diagnosis of deafness can be established. (page 309)<br />
For more than 50 years following the Ewings’ call to action, many people<br />
agreed that it was important to identify DHH children early and provide<br />
early intervention services, but most were skeptical that it could be done<br />
effectively. For example, as recently as 1996, the prestigious United States<br />
Preventive Services Task Force, while noting that “congenital hearing loss is<br />
a serious health problem associated with developmental delay in speech and<br />
language function,” concluded that “there is little evidence to support the use<br />
of routine, universal screening for all neonates.”<br />
Skepticism about the practicality of early identification and intervention<br />
with DHH children began to change in the late 1980s when Dr. C. Everett<br />
Koop, then the Surgeon General of the United States, recognized the potential<br />
of technological advances in procedures and equipment for revolutionizing<br />
1 Many different terms are used to refer to children with permanent hearing loss (e.g., deafness,<br />
hearing impairment, auditory disorders). Recognizing that there are limitations to any single<br />
term, this article will use the term “deaf and hard of hearing (DHH) children” to refer to children<br />
who are deaf or hard of hearing, except in those cases where another source is being quoted.<br />
238 White
the way in which newborn hearing screening, diagnosis, and early intervention<br />
was being done.<br />
Deafness in infants is a serious concern because it interferes with the development<br />
of language–that which sets humans apart from all other living<br />
things . . . early intervention with hearing impaired children results in improved<br />
language development, increased academic success, and increased<br />
lifetime earnings . . . [and] actually saves money since hearing impaired<br />
children who receive early help require less costly special education services<br />
later . . . . I am optimistic. I foresee a time in this country . . . when no<br />
child reaches his or her first birthday with an undetected hearing impairment.<br />
(as reported in Northern & Downs, 1991, pp. 2-3)<br />
Dr. Koop’s commitment to early identification of DHH children and his<br />
optimism that it could be successfully implemented surprised many people,<br />
especially because fewer than 3% of all newborns in the United States were<br />
screened for hearing loss at that time (White, 2004). The average age of identification<br />
of DHH children was 2 1 ⁄2 to 3 years and had changed little during<br />
the previous fifty years (Toward Equality, 1988).<br />
As a result of Dr. Koop’s efforts, the Department of Health and Human<br />
Services established a goal to “reduce the average age at which children with<br />
significant hearing impairment are identified to no more than 12 months”<br />
(U.S. Department of Health and Human Services, 1990). The rationale that<br />
accompanied this objective stated:<br />
. . . it is difficult, if not impossible, for many [children with congenital<br />
hearing loss] to acquire the fundamental language, social, and cognitive<br />
skills that provide the foundation for later schooling and success in society.<br />
When early identification and intervention occur, hearing impaired children<br />
make dramatic progress, are more successful in school, and become<br />
more productive members of society. The earlier intervention and habilitation<br />
begin, the more dramatic the benefits. (p. 460)<br />
During the next 15 years, positive changes in early identification of DHH<br />
children began happening faster and faster. Instead of the gradual evolutionary<br />
changes that had characterized the previous 100 years, revolutionary<br />
changes that began to occur improved both the process and the outcomes in<br />
many areas for DHH children. For example, as shown in Figure 1, the percentage<br />
of newborns screened for hearing loss increased from 3% in 1993 to<br />
93% in 2005 (NCHAM, 2006a). The widespread implementation of universal<br />
newborn hearing screening programs reduced the average age of identification<br />
for DHH children from 30 months to six months as noted by Harrison,<br />
Roush and Wallace (2003).<br />
Forty states have now passed legislation requiring newborn hearing<br />
Finishing the EHDI Revolution 239
Figure 1. Percentage of newborns screened for hearing loss.<br />
screening (NCHAM, 2006b), and the number of children under age 5 receiving<br />
cochlear implants has more than quadrupled in the last five years to over<br />
2,000 children per year (NCHAM, 2006c). These changes mean that for those<br />
DHH children who are identified early, fit with appropriate hearing aids or<br />
cochlear implants and receive early intervention services from appropriately<br />
trained staff, many are able to progress at age-appropriate rates (Kennedy et<br />
al., 2006; Moeller, 2000; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998), require<br />
few, if any, special education services and result in educational cost<br />
savings of at least $400,000 per child (Honeycutt et al., 2003; Mohr et al., 2000).<br />
Although many more DHH children are receiving the benefits of early<br />
intervention and modern assistive listening devices now compared to 20<br />
years ago, there are still many DHH children and their families who are not<br />
(CDC, 2006a). In fact, a recent letter sent to all state early intervention programs<br />
from officials at the Department of Education and the Department of<br />
Health and Human Services (NCHAM, 2006d) noted that there was a “growing<br />
national crises in the provision of essential early intervention and health<br />
care services for infants and toddlers with hearing loss.” That letter stated:<br />
Studies have demonstrated that when hearing loss of any degree, including<br />
mild bilateral or unilateral hearing, is not adequately diagnosed and addressed,<br />
the hearing loss can adversely affect the speech, language, academic,<br />
emotional, and psychosocial development of young children . . .<br />
Although efforts to identify and evaluate hearing loss in young children<br />
have improved, there is still anecdotal evidence to suggest that many<br />
240 White
young children with hearing loss may not be receiving the early intervention<br />
or other services they need in a timely manner that will enable them to<br />
enter preschool and school ready to succeed.<br />
As emphasized by this letter, the importance of providing effective early<br />
intervention services to DHH children is the focus of increased emphasis, and<br />
there is widespread agreement that the families of DHH infants and young<br />
children should have access to appropriate educational services in whatever<br />
mode of communication the family chooses (OSERS, 2006). However, this is<br />
impossible in many parts of the country because of serious shortages and<br />
inadequate geographical distribution of:<br />
• educational programs that use the most up-to-date methods for teaching<br />
language in the mode of communication selected by the family,<br />
• health care and education professionals who are trained and knowledgeable<br />
about current methods for effectively educating children with hearing<br />
loss,<br />
• adequate in-service training programs for individuals already in the field<br />
of deaf education and preservice programs for individuals entering the<br />
field and<br />
• information, public awareness and family support programs for helping<br />
families make informed decisions about the educational options for<br />
DHH children.<br />
The shortages noted above have occurred in part because of the success of<br />
universal newborn hearing screening. The fact that the average age of identification<br />
had gone from 30 months to three months during the past ten years<br />
means that there are many more DHH infants and toddlers to be served.<br />
Twenty years ago, most of these children were not identified until they were<br />
too old to qualify for birth-to-three programs. As shown in Figure 2, federally<br />
funded Part C programs that serve children ages birth to three have historically<br />
served between 1.2 and 2.3 percent of this population. Newborn hearing<br />
screening programs are adding another three children per thousand, which<br />
equates to a 17% increase in the average number of infants and toddlers<br />
served during the last 15 years. Such an increase is difficult for a program to<br />
accommodate when it is already seriously underfunded (Limb, McManus, &<br />
Fox, 2006).<br />
Another factor contributing to these shortages is that in most parts of the<br />
country, early intervention systems for DHH children were developed at a<br />
time when the majority of DHH children were not identified until two to five<br />
years of age, and digital hearing aids and cochlear implants were not available;<br />
thus, the nature of services provided was very different. Very few Part<br />
C early intervention providers have the specialized training necessary to<br />
provide state-of-the-art services to DHH infants and toddlers (Marge &<br />
Finishing the EHDI Revolution 241
Figure 2. Percentage of infants and toddlers served in Part C programs.<br />
Marge, 2005). For example, prior to universal newborn hearing screening<br />
programs, the vast majority of DHH children identified before age 3 were<br />
those with severe or profound bilateral hearing losses. Today, many infants<br />
and toddlers with mild and moderate or even unilateral hearing losses are<br />
being identified before age 3 months. These children require very different<br />
types of services than those needed by DHH children with bilateral severe/<br />
profound losses.<br />
The initiation of universal newborn hearing screening in the early 1990s<br />
started a revolution in our ability to identify DHH children at very young<br />
ages. These revolutionary changes provide great opportunities, but many<br />
DHH children and their families are not yet benefiting to the degree that they<br />
should. How can this situation be improved? Although the solutions will<br />
require many different strategies and resources from many stakeholders, part<br />
of the solution is already in place–but underutilized. In 1997, Congress passed<br />
Public Law (PL) 99-457–the Individuals with Disabilities Education Act (IDEA),<br />
which provided resources and guidelines for all states to offer early intervention<br />
services to infants and toddlers with disabilities. Better coordination<br />
between this federal program and the activities of state EHDI programs<br />
would do much to strengthen the early intervention components of EHDI<br />
programs. The remainder of this article will show how the Infant and Toddler<br />
portion of IDEA (often referred to as Part C after the section of the law that<br />
outlines how states must provide services to infants and toddlers with disabilities)<br />
can be used to finish the EHDI revolution. By using the framework<br />
and infrastructure defined by Part C of IDEA, professionals serving DHH<br />
children and their families will be more effective in creating successful early<br />
intervention services for thousands of DHH infants and toddlers being identified<br />
by universal newborn hearing screening and diagnostic programs.<br />
242 White
Part C of IDEA<br />
In 1975, Congress recognized that children with disabilities often did not<br />
receive the education and related services needed to make the developmental<br />
progress of which they were capable. As a result, Congress passed landmark<br />
legislation in 1975 (PL 94-142, The Education for All Handicapped Children Act),<br />
requiring states to provide all 5- to 21-year-old children with disabilities with<br />
a free and appropriate education in the least restrictive environment. In 1986,<br />
Congress amended that Act with PL 99-457, which was reauthorized and<br />
amended in 1997 as PL 105-17, and again in 2004 as PL 108-446. In the 1986<br />
amendments, Congress called for the creation of statewide, coordinated, multidisciplinary,<br />
interagency programs for the provision of appropriate early<br />
intervention services for all infants and toddlers with disabilities. This section<br />
of the law, known as Part C (formerly known as Part H), did not actually<br />
require states to provide early intervention services but instead made partial<br />
reimbursement of the costs of services readily available to states that wished<br />
to participate. All states have chosen to participate and have established Part<br />
C programs for children ages birth to three years. Section 631 of the current<br />
law (the Individuals with Disabilities Education Improvement Act: Part C–Infants<br />
and Toddlers with Disabilities) is designed to:<br />
• enhance the development of infants and toddlers with disabilities to<br />
minimize the potential for developmental delay,<br />
• reduce the education costs to society by minimizing the need for special<br />
education and related services after infants and toddlers with disabilities<br />
reach school age,<br />
• minimize the likelihood of institutionalization and maximize the potential<br />
for independent living in society,<br />
• enhance the capacity of families to meet the needs of their children and<br />
• enhance the capacity of states and local programs to meet the needs of<br />
underrepresented populations, particularly minority, low income, inner<br />
city and rural populations.<br />
States choosing to participate in the Part C program (which all states have<br />
done) are required to meet a set of minimum requirements as outlined in<br />
Section 635 of the statute (NECTAC, 2006). Some of these requirements govern<br />
the system’s infrastructure and apply in about the same way for all<br />
children with disabilities (e.g., designating a lead agency for providing general<br />
administration and supervision, developing policies for contracting for<br />
services, providing procedures for timely reimbursement of funds, establishing<br />
procedural safeguards, compiling and reporting data about the early<br />
intervention system and creating a state interagency coordinating council).<br />
The remaining requirements call for the creation of components to be applied<br />
differently depending on the child’s disability. Better understanding of these<br />
Finishing the EHDI Revolution 243
components will contribute to improving the quality of early intervention<br />
services for DHH children. The following components are particularly relevant<br />
for creating a strong EHDI system and will each be discussed in the<br />
following sections: (1) eligibility criteria, (2) comprehensive child-find and<br />
referral systems (3) comprehensive systems of personnel development, (4)<br />
appropriate early intervention services and (5) public awareness programs.<br />
Section 634 of the law notes that:<br />
Eligibility Criteria<br />
in order to be eligible for a grant . . . a state shall provide assurances to the<br />
secretary that the state has adopted a policy that appropriate early intervention<br />
services are available to all infants and toddlers with disabilities in<br />
the state and their families.<br />
The federal regulations accompanying the law (34 CFR Part 303.16) require<br />
states to provide appropriate early intervention services to any infant or<br />
toddler:<br />
who is experiencing developmental delays as measured by appropriate<br />
diagnostic instruments and procedures in one or more of the areas of<br />
cognitive development, physical development, communication development,<br />
and adaptive development; or [who has] a diagnosed physical or<br />
mental condition that has a high probability of resulting in developmental<br />
delay.<br />
Infants and toddlers with permanent hearing loss will almost always exhibit<br />
developmental delays in one or more of the specified developmental<br />
areas if appropriate early intervention services are not provided. However,<br />
existing measures of development are not sensitive enough to measure these<br />
delays until children are at least a year old, which is far too late for early<br />
intervention programs to begin. (Kral & Tillein, 2006; Yoshinaga-Itano, Sedey,<br />
Coulter, & Mehl, 1998). Thus, if they are to be eligible, most DHH children<br />
will have to qualify for Part C services under the condition that they have “a<br />
diagnosed physical or mental condition that has a high probability of resulting<br />
in developmental delay.” In fact, the federal regulations for this section of<br />
the law use “severe sensory impairments, including hearing and vision” as<br />
one of the examples that would make a child with no measured delays eligible<br />
for Part C services.<br />
How the eligibility criteria are operationalized is left to the discretion of<br />
each state, but the criteria must be described in detail in a plan the state<br />
submits to the federal government. To better understand how states are providing<br />
services to DHH children, the written state plans submitted to the<br />
244 White
federal government were obtained and analyzed (NCHAM, 2006e). As expected,<br />
all of the 55 states and territories indicated that services would be<br />
provided to a child who had a diagnosed physical or mental condition that<br />
has a high probability of resulting in development delay. In describing the<br />
conditions for which their state would provide such services, only 37 of the55<br />
(67%) listed hearing loss, auditory impairment, deafness, or something similar<br />
as one of the specific conditions that would make a child eligible for Part<br />
C services. This suggests that some Part C program officials may not recognize<br />
the negative consequences that occur when DHH children do not begin<br />
receiving early intervention during the first few months of life.<br />
Furthermore, only 7 of the 55 states and territories (13%) provided any kind<br />
of operational definition that could be used to determine if a specific DHH<br />
child would be eligible for services (e.g., any child with bilateral sensorineural<br />
hearing impairment greater than 40 dB qualifies for services). Twelve other<br />
states (22%) provided some type of operational definition for hearing loss in<br />
other documents but did not include it in the official state plan. Detailed<br />
information about the eligibility criteria in each state plan and associated state<br />
documents is available at www.infanthearing.org (NCHAM, 2006e).<br />
The fact that the official state plan for so many Part C programs does not<br />
specifically address the eligibility criteria for DHH children is concerning<br />
because it suggests that these children may not be consistently served in Part<br />
C programs. Even in those plans that include references to DHH children, it<br />
is often unclear whether children with unilateral hearing loss will be served,<br />
what degree of hearing loss is required to make a child eligible for services<br />
and what type of diagnostic testing must be done to qualify a child for<br />
services (the operational definitions in the existing state plans range from<br />
very specific criteria, which indicate degree, type and laterality of hearing<br />
loss, such as is the case in the state of Washington, to vague statements about<br />
parental concern or failure on hearing screening tests).<br />
The current situation would be significantly improved if those responsible<br />
for the state’s EHDI program and other stakeholders (e.g., parents, audiologists,<br />
primary healthcare physicians, etc.) would work with Part C program<br />
officials to define specific well-defined eligibility criteria for DHH children to<br />
be enrolled in the Part C programs. Examples of states that have done a<br />
relatively good job of this include Connecticut, Louisiana, New Hampshire<br />
and Washington (although some of these eligibility criteria are included in<br />
other documents from the state and not in the state plan submitted to the U.S.<br />
Department of Education). Being clear about which DHH children are eligible<br />
for Part C services would be relatively easy and would yield valuable benefits.<br />
Comprehensive Child-Find and Referral System<br />
Section 635(a)(5) notes that each state’s Part C program must include “a<br />
comprehensive child-find system . . . for making referrals to service providers<br />
Finishing the EHDI Revolution 245
that includes timelines and provides for participation by primary referral<br />
sources.” The federal regulations for this part of the law found at 34 CFR Part<br />
303.321 note the following:<br />
(b) Procedures. The child find system must include the policies and procedures<br />
that the State will follow to ensure that<br />
(1) All infants and toddlers in the State who are eligible for services<br />
under this part are identified, located, and evaluated; and<br />
(2) An effective method is developed and implemented to determine<br />
which children are receiving needed early intervention services.<br />
(c) Coordination.<br />
(1) The lead agency . . . shall ensure that the child find system under<br />
this part is coordinated with all other major efforts to locate and<br />
identify children conducted by other State agencies responsible for<br />
administering the various education, health, and social service programs<br />
relevant to this part . . . .<br />
(2) The lead agency . . . shall take steps to ensure that—<br />
(i) There will not be unnecessary duplication of effort by the various<br />
agencies involved in the State’s child find system under this<br />
part; and<br />
(ii) The State will make use of the resources available through each<br />
public agency in the State to implement the child find system in<br />
an effective manner.<br />
(d) Referral procedures.<br />
(1) The child find system must include procedures for use by primary<br />
referral sources for referring a child to the appropriate public<br />
agency . . .<br />
(2) The procedures required in paragraph (b)(1) of this section must—<br />
(i) Provide for an effective method of making referrals by primary<br />
referral sources;<br />
(ii) Ensure that referrals are made no more than two working days<br />
after a child has been identified; and<br />
(e) Timelines for public agencies to act on referrals.<br />
(1) Once the public agency receives a referral, it shall appoint a service<br />
coordinator as soon as possible.<br />
(2) Within 45 days after it receives a referral, the public agency shall—<br />
(i) Complete the evaluation and assessment activities in Sec.<br />
303.322; and<br />
(ii) Hold an IFSP meeting, in accordance with Sec. 303.342.<br />
IDEA clearly specifies that state agencies responsible for administering<br />
various education, health and social service programs must work together to<br />
identify children who would benefit from and need services under IDEA.<br />
246 White
Figure 3. Per child funding from Part C of IDEA.<br />
This point is also emphasized by the Year 2000 Position Statement from the<br />
Joint Committee on Infant Hearing (JCIH), which notes that:<br />
In accordance with the Individuals with Disabilities Education Act (IDEA),<br />
referral to a public agency must take place within 2 working days after the<br />
infant has been identified as needing evaluation. Care can be facilitated by<br />
involving a public agency, as the role of this agency is to appoint a service<br />
coordinator, identify an audiologist to complete the audiologic evaluation,<br />
and identify other qualified personnel to determine the child’s level of<br />
functioning.<br />
Unfortunately, many state EHDI programs are not well coordinated with Part<br />
C programs. In a survey of state EHDI coordinators conducted by NCHAM<br />
(2006a), only 57% of state EHDI coordinators indicated that they had “good<br />
or excellent coordination and cooperation” with their state Part C program.<br />
Of state EHDI coordinators, 34% did not know or said there was not someone<br />
on the Part C Interagency Coordinating Council with expertise and experience<br />
in serving infants and toddlers with hearing loss and 16% of the state<br />
EHDI programs indicated they did not report children identified with hearing<br />
loss to the state’s Part C programs. Only 40% of the state EHDI programs<br />
reported that children enrolled in the state Part C programs for reasons other<br />
than permanent hearing loss were regularly checked for hearing status.<br />
Infants who do not pass the newborn hearing screening are clearly at risk<br />
for permanent hearing loss and should be included in the Part C child-find<br />
system. Unfortunately, given the current funding limitations, it is unlikely<br />
that Part C programs will assume responsibility for another substantial population.<br />
As shown in Figure 3, per child funding for Part C of IDEA has been<br />
declining since 1999. In terms of real dollars from initial program funding in<br />
Finishing the EHDI Revolution 247
1991, there is only about $1,000 available per child to cover all of the Part C<br />
services, including child-find activities.<br />
Given the number of children currently served, the expectation that Part C<br />
will be responsible for conducting diagnostic evaluations of all of infants<br />
referred from newborn hearing screening programs is unrealistic. This means<br />
that Part C would be responsible for approximately 33% more children in<br />
their child-find activities, which would be very difficult given the resources<br />
Part C has available. Nonetheless, it is imperative that state EHDI programs<br />
and Part C programs find ways to collaborate more effectively on child-find<br />
activities. At the very least, better information sharing between programs and<br />
more systematic evaluation of hearing loss of children already enrolled in<br />
Part C programs should be established. Given the requirements in the IDEA<br />
regulations for completing evaluations and developing an individualized<br />
family service program for children identified with disabilities within 45 days<br />
of referral, Part C and EHDI programs must work together to eliminate<br />
waiting periods for diagnostic evaluations so that services can be provided in<br />
a timely manner.<br />
Comprehensive System of Personnel Development<br />
IDEA requires state early intervention systems to operate “a comprehensive<br />
system of personnel development [that promotes] the preparation of<br />
early intervention providers who are fully and appropriately qualified to<br />
provide early intervention services (34 CFR 303.168).” As the age of identification<br />
for DHH children has decreased and cochlear implants and digital<br />
hearing aids have become more widely available, the nature of early intervention<br />
services for DHH children has changed. Approximately 95% of DHH<br />
children are born to hearing parents (Mitchell & Karchmer, 2004). Given<br />
recent evidence about the ability of DHH children who received early cochlear<br />
implants and high-quality early intervention to achieve similar levels<br />
as their hearing peers (Cheng et al., 2006; Geers, 2004), it is not surprising that<br />
increasing numbers of parents are choosing auditory/oral programs, which<br />
focus on teaching DHH children to listen and speak, rather than sign language-based<br />
programs, which, historically is how most DHH children were<br />
educated. For example, Brown (2006) compared the choices made by parents<br />
of DHH children in North Carolina in 1995 and again in 2005. North Carolina<br />
is one of the few states in the country that has a well-developed early intervention<br />
program for DHH children that includes a full range of auditory/oral<br />
and sign language-based options. In 1995, 40% of families chose auditory/<br />
oral options compared to 60% who chose sign language-based options. In<br />
2005, 85% of families chose auditory/oral options compared to 15% who<br />
chose sign language-based options. Such a dramatic change over a ten-year<br />
period has important implications for how early intervention program providers<br />
are trained.<br />
248 White
Figure 4. Primary emphasis of personnel preparation programs for teachers of the<br />
deaf or hard of hearing. Although many programs describe themselves as<br />
providing “comprehensive” services, most have a primary emphasis on a specific<br />
approach, as indicated by the curriculum offerings, the placement of graduates, the<br />
type of practicum available, etc. Classification of programs on this map considered<br />
those factors in conjunction with annual self-report survey data from the 2004 and<br />
2005 issues of the American Annals of the Deaf.<br />
Currently there are about 70 university-based programs for preparing<br />
teachers of the deaf or other professionals to work with DHH children. Based<br />
on information contained in the 2004 and 2005 issues of the American Annals<br />
of the Deaf, combined with information about faculty publications, curriculum,<br />
the placement of graduates and program Web sites, these programs<br />
were classified as to whether the primary emphasis was on sign languagebased<br />
or auditory/oral-based options. As shown in Figure 4, the vast majority<br />
of these programs focus primarily on sign language-based options. In fact, of<br />
all graduates from DHH teacher-education programs in 2004, only 8% were<br />
from programs that focused primarily on auditory/oral options. This is similar<br />
to the distribution of programs funded by the Office of Special Education<br />
and Rehabilitative Services (OSERS) for teacher preparation of professionals<br />
working with DHH children. Of the 19 OSERS-funded programs for teachers<br />
of DHH children, only three have an auditory/oral emphasis.<br />
Thus, Part C programs are in a difficult position. The vast majority of<br />
Finishing the EHDI Revolution 249
parents, when they are given an option, choose auditory/oral-based programs.<br />
In contrast, the vast majority of teachers graduating from universitybased<br />
deaf education programs are trained primarily in sign language-based<br />
options. Adjusting the mix of options in a way that provides families with the<br />
choices they would like to have will be challenging and, yet, is essential to<br />
meet the requirements of IDEA.<br />
Appropriate Early Intervention Services<br />
Section 635 of PL 108-446 requires that DHH children be provided with<br />
“appropriate early intervention services based on scientifically based research.”<br />
According to the JCIH (2000), almost all infants and children with<br />
permanent hearing loss need some form of assistive listening device (either<br />
hearing aids or a cochlear implant) for early intervention services to be effective.<br />
If the family decides to have an assistive listening device for the child,<br />
selection and fitting should be provided as soon as possible. Because DHH<br />
children are more likely than adults to have asymmetric losses and configurations<br />
of hearing loss that are more varied than adults, DHH infants and<br />
children often require different features and capabilities in their hearing aids<br />
than those typically used by adults. Children’s hearing aids must provide a<br />
signal that makes all speech sounds audible and comfortable and ensure<br />
intensities are limited to safe levels (Pittman & Stelmachowicz, 2003; Stelmachowicz<br />
et al., 2000; Pittman, Stelmachowicz, Lewis, & Hoover, 2003; American<br />
Academy of Audiology, 2003). Recently developed digital hearing aids<br />
with features such as wide dynamic range compression, automatic feedback<br />
cancellation and multiple channels can achieve these goals in contrast to<br />
analog hearing aids, which are often unable to accommodate these demands.<br />
If DHH children are not provided with assistive listening devices during<br />
the first few months of life, there are serious negative consequences. Without<br />
auditory input and consistent early intervention programs that focus on<br />
teaching language, DHH children almost always lag behind their peers in<br />
language, cognitive and social-emotional development (JCIH, 2000). Several<br />
studies have shown that by the time they are eight years old, deaf children are<br />
already 1 1 ⁄2 years behind their hearing peers in reading comprehension scores<br />
(Schildroth & Karchmer, 1986; Gallaudet Research Institute, 1996) and half of<br />
all deaf children graduate from high school with a fourth grade reading level<br />
or less (Gallaudet Research Institute, 1996). Such deficits are not limited to<br />
children with bilateral hearing loss. Children with unilateral hearing loss are<br />
ten times as likely to be held back at least one grade, compared with children<br />
who have normal hearing (Oyler, Oyler, & Matkin, 1998). Furthermore, studies<br />
comparing children with unilateral hearing loss to matched groups of<br />
children with normal hearing find that children with unilateral hearing loss<br />
lag behind their hearing peers by one-half to two-thirds of a standard deviation<br />
by the time they reach the third or fourth grade (Blair, Peterson, &<br />
250 White
Viehweg, 1985; Brookhouser, Worthington, & Kelly, 1991; Culbertson & Gilbert,<br />
1986).<br />
When DHH children are not identified early and provided with appropriate<br />
access to auditory input and early intervention programs, there are also<br />
significant costs to society in terms of direct medical costs, special education<br />
expenditures and lost productivity. According to Chambers, Shkolnik, &<br />
Perez (2003), DHH children required more than twice the annual per student<br />
educational expenditure as children without disabilities ($15,992 versus<br />
$6,556) in the year 2000. Another study (Schroeder et al., 2006) found that the<br />
average economic costs per year for children with bilateral moderate, severe<br />
or profound hearing loss were nearly four times those for hearing children<br />
($26,207 versus $7,823). Many of the negative outcomes DHH children have<br />
historically experienced can be minimized or avoided completely if they are<br />
provided with appropriate amplification and early intervention that focuses<br />
on teaching language (Yoshinaga-Itano, 1998; Moeller, 2000; Kennedy et al.,<br />
2006).<br />
In spite of the consensus among professionals about the importance of<br />
fitting hearing aids as early as possible, data from various sources suggests<br />
that it is quite difficult for many DHH children to obtain hearing aids. For<br />
example, most private health insurance plans explicitly exclude coverage for<br />
hearing aids (Nemes, 2004). A recent survey of hearing aid users found that<br />
only 16% of children had any coverage of hearing aids through their private<br />
health insurance plan (Rhoades & Powell, 2002, No. 35). Fox, McManus, &<br />
Reichman (2002) reported that only 7% of the most commonly sold private<br />
health insurance plans offered hearing aid coverage.<br />
More than half of all children in the United States are covered by Medicaid,<br />
which generally does provide coverage for hearing aids. Unfortunately, reimbursement<br />
rates are so low that most children do not obtain the type of<br />
hearing aids they need. McManus et al. (2004) found in a 15-state region that<br />
average Medicaid fees for hearing aids and other auditory audiology services<br />
were only 38% of those paid by private health insurers. Furthermore, in many<br />
states, “medical necessity” guidelines require that Medicaid provide the<br />
“least costly alternative.” Consequently, analog aids, rather than digital aids,<br />
are often provided to children despite clear evidence that digital aids would<br />
be more beneficial (AAA, 2003).<br />
At the present time, Part C programs seldom pay for hearing aids, It would<br />
seem however, that Part C should be a source of funding to provide appropriate<br />
hearing aid technology to DHH children when other sources are unavailable.<br />
According to IDEA, funds from Part C cannot be used to pay for<br />
services that would otherwise have been paid for from another public or<br />
private source (34 CFR 303.520). However, because both Medicaid and private<br />
insurance plans are unlikely to cover the type of hearing aids needed for<br />
DHH children to make optimal developmental progress, Part C should be<br />
available to fill the gap.<br />
Finishing the EHDI Revolution 251
Historically, the federal Department of Education ruled that education<br />
agencies are not required to provide a personal device that a student would<br />
require, whether in school or not (and this would apply to hearing aids).<br />
However, in 1990, Congress added the definitions of assistive technology<br />
devices and services to the Education of the Handicapped Act by incorporating<br />
the definitions of assistive technology devices included in the Technology<br />
Related Assistance for Individuals with Disabilities Act of 1988 (PL 101-476). Those<br />
amendments make it clear that assistive technology must be provided as a<br />
part of a free and appropriate public education whenever it is necessary for<br />
the child to benefit from educational services. The same requirements apply<br />
to early intervention services under Part C. Assistive technology device is<br />
defined in that legislation as follows:<br />
The term “assistive technology device” means any item, piece of equipment,<br />
or product system, whether acquired commercially off the shelf,<br />
modified, or customized, that is used to increase, maintain, or improve<br />
functional capabilities of individuals with disabilities.<br />
In its passage of the Individuals with Disabilities Education Improvement Act<br />
on December 3, 2004, Congress continued to emphasize the important role<br />
played by assistive technology devices and services in the education of students<br />
with disabilities. In the preamble to that statute, it was noted that:<br />
almost 30 years of research and experience has demonstrated that the education<br />
of children with disabilities can be made more effective by . . . supporting<br />
the development and use of technology, including assistive<br />
technology devices and services, to maximize accessibility for children with<br />
disabilities.<br />
Thus, it seems clear that Congress intended for hearing aids to be covered by<br />
Part C programs to the extent that they are not covered by other sources and<br />
to the degree that they are necessary to assist in meeting the developmental<br />
needs of DHH children. The fact that Part C programs have been hesitant to<br />
pay for hearing aids could be a function of the limited amount of funding<br />
available to these programs. Nonetheless, it seems clear that early provision<br />
of appropriate hearing aids will lead to better outcomes for students and in<br />
the long term will actually save money. Thus, state EHDI programs should<br />
continue to work with Part C programs to ensure that hearing aids are available<br />
through Part C when they are not available from other sources.<br />
Public Awareness<br />
A major obstacle in providing effective early intervention services to DHH<br />
children has been making various stakeholders aware of the progress that has<br />
252 White
Table 1. Estimates From Primary Health Care Providers Regarding When Children<br />
Can Be Fit with Hearing Aids<br />
Type of Physician<br />
Age at Which Hearing Aids Can Be Fit<br />
Less than<br />
1 month<br />
2-3<br />
mos<br />
4-6<br />
mos<br />
7-11<br />
mos<br />
15+<br />
mos<br />
Pediatrician (n = 1145) 36.3% 16.9% 29.0% 2.1% 15.6%<br />
Family Physician (n = 531) 38.2% 15.6% 23.2% 0.9% 22.0%<br />
Neonatologist (n = 52) 28.8% 21.2% 32.7% 0.0% 17.3%<br />
Ear, Nose & Throat Specialist (n = 58) 27.6% 15.5% 20.7% 1.7% 34.5%<br />
been made in the last 15 years. Many of these changes affect the way early<br />
intervention services should be provided. Unless people are aware of these<br />
changes, they will continue to make decisions based on old data, thus preventing<br />
DHH children and families from accessing the most effective services.<br />
One particularly important group who need to be educated about the<br />
progress that has been made are primary healthcare providers. The American<br />
Academy of Pediatrics has worked hard to include pediatricians in the early<br />
intervention process for all children with disabilities (AAP, 1999a, 2001). One<br />
area in particular in which the AAP has worked to educate healthcare providers<br />
is the recent advances in early identification of hearing loss and how<br />
that should impact the advice they give to parents about early intervention<br />
services for their DHH child (AAP 1999b, 2006).<br />
There is still much work to be done in this area. In a recent study reported<br />
by Moeller, White, & Shisler (2006) in which responses to a survey were<br />
collected from almost 2,000 primary care physicians from across the United<br />
States, it was found that even though pediatricians and other primary care<br />
providers recognized the benefits of early detection and intervention for<br />
DHH children, many of them were not current in their understanding of how<br />
early intervention services can best be provided to this population. For example,<br />
in response to an open-ended question in which they were asked,<br />
“What is your best estimate of the earliest age at which a child can begin<br />
wearing hearing aids,” 41.6% said this could not occur until children were six<br />
months of age or older. As shown in Table 1, the results were not much<br />
different for pediatricians, family physicians, neonatologists and ENTs. Respondents<br />
were also asked to list any specialists to whom they would “routinely<br />
refer the family of a child with a confirmed permanent hearing loss.”<br />
According to the JCIH (2000), all such children should be referred for an<br />
ophthalmological and genetic evaluation. Yet, less than 1% of the respondents<br />
indicated they would refer the child to an ophthalmologist, and only 9%<br />
indicated they would refer the child to a geneticist. Almost half of the respondents<br />
gave incorrect responses to the question asking which children<br />
would be candidates for cochlear implant surgery (indicating that children<br />
Finishing the EHDI Revolution 253
with unilateral profound losses, bilateral mild to moderate losses, and unilateral<br />
mild to moderate losses would be candidates for a cochlear implant).<br />
These gaps in knowledge are all the more concerning given that 89% of the<br />
respondents said that they were very confident or somewhat confident in<br />
explaining the newborn hearing screening process to parents who had questions<br />
about their infant’s results.<br />
The fact that primary healthcare providers are unaware of many of the<br />
recent improvements in early intervention services for this population is not<br />
surprising given how rapidly changes have happened and the relatively<br />
small percentage of DHH children in the population. Nonetheless, effective<br />
early intervention services depend, in large part, on families obtaining upto-date,<br />
accurate information, and primary healthcare providers are a primary<br />
and trusted source of information for many families (Arnold et al.,<br />
2006). Therefore, an important part of strengthening the early intervention<br />
system will be to ensure that healthcare providers (including nurses, nurse<br />
practitioners and physician assistants) are educated about the changes that<br />
have occurred during the last 15 years.<br />
Conclusions<br />
The importance of identifying DHH children as soon as possible and providing<br />
them with appropriate early intervention services (including medical,<br />
audiological and educational services) has been recognized for many years. In<br />
the last 15 years, technological advances and the widespread implementation<br />
of universal newborn hearing screening programs have stimulated progress<br />
at an accelerated rate. Unfortunately, for many DHH infants and young children,<br />
improvements in the early intervention process have lagged behind<br />
other components of EHDI.<br />
Completing the EHDI revolution will require systematic and sustained<br />
attention to providing comprehensive, up-to-date early intervention services<br />
to children identified through newborn hearing screening programs. Part Cof<br />
IDEA provides a framework for these changes to occur. However, in the past<br />
EHDI programs and Part C programs have not worked together as comprehensively<br />
as they should. The framework for such cooperative work is present,<br />
but more attention needs to be given to ensuring that all DHH children<br />
are eligible for Part C services and that EHDI screening and diagnostic programs<br />
are better coordinated with Part C child-find procedures. Additionally,<br />
both preservice and inservice personnel preparation activities must become<br />
responsive to changes in parent preferences for the type of intervention they<br />
want for their child. Hearing aids and other assistive listening devices must<br />
be more accessible to all DHH children and, finally, various stakeholders<br />
must become educated about the progress and changes that have occurred in<br />
the last 15 years.<br />
254 White
Acknowledgments<br />
Preparation of this manuscript was supported in part by the Maternal and<br />
Child Health Bureau under Grant Number 6 H61 MC 00006.<br />
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Limb, S.J., McManus, M.A., & Fox, H.B. (2006). Assuring financial access to<br />
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Marge, D.K., & Marge, M. (2005). Beyond newborn hearing screening: Meeting the<br />
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with Hearing Loss, September 10-12, 2004. Syracuse, New York: Department<br />
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Finishing the EHDI Revolution 257
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258 White
The Volta Review, Volume <strong>106</strong>(3) (monograph), 259-274<br />
Statewide Collaboration in<br />
the Delivery of EHDI Services<br />
Joni Alberg, Ph.D, Kathryn Wilson, M.A., CCC-SLP, Cert. AVT ® , and<br />
Jackson Roush, Ph.D., CCC-A<br />
Introduction<br />
In 1999, North Carolina enacted legislation requiring the screening of all<br />
newborn infants for hearing loss as part of a comprehensive statewide effort<br />
to achieve early hearing detection and intervention (EHDI). This law (NCAC<br />
43F.1201) requires physiologic screening prior to hospital discharge unless<br />
declined by the parents or precluded by medical complications. Results are<br />
then reported to the North Carolina State Laboratory for Public Health. Since<br />
full implementation in August 2000, more than 700,000 babies have been born<br />
in the state’s 90 birthing hospitals, and most have been screened successfully.<br />
In the first few years following this legislation, much of the time, energy and<br />
financial resources of the EHDI system were devoted to the screening itself:<br />
establishing programs, equipping nurseries and training staff. But with each<br />
passing year, there has been growing awareness of the need to focus on the<br />
services that must be provided after the screening: comprehensive audiologic<br />
assessment, otologic examination, and for infants found to have permanent<br />
hearing loss, family support and referral for early intervention services.<br />
This has resulted in opportunities as well as challenges and, not surprisingly,<br />
there has been mixed success. Most importantly, those involved with<br />
the statewide EHDI system have come to recognize that early identification<br />
and intervention require the coordination and collaboration of many programs,<br />
agencies, and institutions (JCIH 2000). The following program description<br />
examines three components of North Carolina’s statewide EHDI<br />
program that have undergone substantial growth and development as a result<br />
of newborn screening: (1) the clinical and educational programs of the<br />
Joni Alberg, Ph.D., is the executive director of BEGINNINGS for Parents of Children Who Are<br />
Deaf or Hard of Hearing, Inc. Kathryn Wilson, M.A., CCC-SLP, Cert. AVT ® , is the director<br />
of the Resource Support Program in the Office of Education Services for the North Carolina<br />
Department of Health and Human Services and an adjunct professor at the University of<br />
North Carolina-Chapel Hill. Jackson Roush, Ph.D., CCC-A, is professor and director of the<br />
Division of Speech and Hearing Sciences, University of North Carolina School of Medicine at<br />
Chapel Hill, and the section head for audiology at the University of North Carolina Center for<br />
the Study of Development and Learning.<br />
Statewide EHDI Collaboration 259
University of North Carolina at Chapel Hill (UNC), which are based in the<br />
UNC School of Medicine and UNC Hospitals (UNCH); (2) services to families<br />
provided by BEGINNINGS for Parents of Children Who are Deaf or Hard of<br />
Hearing; and (3) services provided through our statewide network of early<br />
intervention programs, administered by the Office of Education Services<br />
(OES) in the North Carolina Department of Health and Human Services<br />
(DHHS), as well as strategies for building a comprehensive program. In addition<br />
to describing successful outcomes, this report examines aspects of each<br />
component that have been frustrating or problematic and the ongoing efforts<br />
to improve quality of care and access to services for all families in North<br />
Carolina.<br />
The University of North Carolina at Chapel Hill<br />
The hospitals at UNC provide inpatient and outpatient clinical programs<br />
for the UNC School of Medicine, serving patients from each of North Carolina’s<br />
100 counties. Every year thousands of infants and their families are<br />
served in UNC’s Women’s and Children’s Hospitals. UNC otolaryngologists<br />
deliver specialized ear, nose and throat services to more than 30,000 patients<br />
annually. The pediatric audiology program at UNCH has grown substantially<br />
since the onset of newborn hearing screening, from two to three comprehensive<br />
infant diagnostic assessments per month in 1999 to an average of 30 per<br />
month in 2007 (P. Roush, personal communication, January 2007). The Carolina<br />
Children’s Communicative Disorders Program (CCCDP), affiliated with<br />
the Department of Otolaryngology, includes a pediatric cochlear implant<br />
program; the Center for Acquisition of Spoken Language Through Listening<br />
Enrichment (CASTLE), which offers an auditory/oral preschool for children<br />
with hearing loss; and assessment-intervention services provided by speechlanguage<br />
pathologists and teachers, some of whom are Certified Auditory-<br />
Verbal Therapists. Through CASTLE, the CCCDP offers internships, a<br />
summer institute in Auditory-Verbal therapy, an annual conference, and<br />
mentoring for professionals in the development of spoken language through<br />
audition. The close working relationship between the UNCH pediatric audiology<br />
program and the CCCDP, which together follow more than 1,300 children<br />
who are deaf or hard of hearing, makes it possible for the audiologists,<br />
otolaryngologists, speech-language pathologists and intervention specialists<br />
to participate in weekly team meetings to monitor children’s progress and<br />
make recommendations regarding implant candidacy (C. Brown & P. Roush,<br />
personal communication, January 2007).<br />
In addition to providing clinical services, both UNCH and CCCDP make<br />
important contributions to graduate education. Students in the UNC Doctor<br />
of Audiology (Au.D.) program, which is based in the Division of Speech and<br />
Hearing Sciences, participate in a full range of pediatric services. Audiology<br />
trainees participate in newborn and neonatal intensive care unit hearing<br />
260 Alberg, Wilson, & Roush
screening, physiologic assessment of infants referred from screening using<br />
frequency-specific auditory brainstem response (ABR) and other physiologic<br />
measures, pediatric hearing aid selection and fitting and cochlear implant<br />
evaluation and mapping. In their first year, students observe and provide<br />
assistance to the pediatric audiologists. Second- and third-year students are<br />
enrolled in clinical externships involving assessment and management of<br />
hearing loss in infants and young children. Both the UNCH Pediatric Audiology<br />
program and the CCCDP provide externship placements for fourthyear<br />
students.<br />
Accomplishments and Challenges<br />
Growth in the number of families served has necessitated an increase in the<br />
number of pediatric audiologists available to provide clinical services. The<br />
large and growing caseloads have made it possible for audiologists at UNCH<br />
to acquire expertise evaluating and managing newly identified infants. Physiologic<br />
assessment including ABR, auditory steady-state responses (ASSR),<br />
otoacoustic emissions and acoustic immittance measures are performed routinely<br />
with infants in natural sleep, in conscious sedation and, when necessary,<br />
under general anesthesia.<br />
For infants referred to UNCH without health complications, the average<br />
age of diagnosis is approximately 3 months. When families concur with the<br />
recommendation for hearing aid use, the initial fitting is typically completed<br />
within two weeks. Infants are followed every four to six weeks for monitoring<br />
of earmolds, hearing aid use, and middle ear status.<br />
Once infants reach a developmental level of 6-7 months, physiologic tests<br />
are supplemented with behavioral measures using visual reinforcement audiometry<br />
(VRA). VRA can be used successfully with most infants to obtain<br />
threshold measures for each ear from 250 to 4000 Hz by 9 months of age.<br />
Initial hearing aid selection and fitting is accomplished with real-ear-tocoupler<br />
difference (RECD) measurements, a “real-ear” method appropriate<br />
for young children who are deaf or hard of hearing. Hearing aids are fitted<br />
using the Desired Sensation Level prescriptive formula that targets gain and<br />
output to ensure that sound is both audible and comfortable (Bagatto et al.,<br />
2005). If families concur, fitting can move forward with minimal delay because<br />
of an efficient approval process that allows earmold impressions to be<br />
taken and hearing aids ordered at the time of diagnosis. Once hearing threshold<br />
levels are established for both physiologic and behavioral measures, children<br />
are followed every three months until approximately 3 years of age and<br />
then every four to six months thereafter.<br />
Aided speech perception measures are completed as soon as children have<br />
the requisite language skills. Initially, these measures are accomplished<br />
through the identification of closed sets of objects and pictures. As children’s<br />
speech and language abilities increase, appropriate open set tests are used.<br />
Statewide EHDI Collaboration 261
When children begin to walk and the distance between speaker and listener<br />
increases, personal FM systems are introduced to families for home use. The<br />
North Carolina Assistive Technologies program funds one pair of digital<br />
hearing aids, a personal FM system, and hearing aid repairs and earmolds<br />
until children reach age 3. Unfortunately, when a child turns 3 they are no<br />
longer eligible to receive funds from this program. Families must find other<br />
resources with which to purchase technology for their children. In addition to<br />
self-pay, options include the state Medicaid program and a state-funded program<br />
for families who do not qualify for Medicaid but have limited financial<br />
resources.<br />
In addition to providing early, accurate audiologic management, the UNC<br />
program provides services that support families and are sensitive to cultural<br />
differences. Although providing collaborative, family friendly services can be<br />
challenging in a large medical center, the audiologists are committed to providing<br />
family-centered care that transcends the practice setting. Children’s<br />
hearing care needs are different from those of adults and, as a result, accommodations<br />
have been made to allow for the time and staffing necessary to<br />
provide appropriate pediatric management.<br />
When hearing loss is identified in an infant, a comprehensive otologic<br />
work-up is required. At UNC and other centers where comprehensive care of<br />
infants with hearing loss is provided, the components of the otologic work-up<br />
include examination of the ears, a thorough case history and relevant laboratory<br />
studies. At UNCH, imaging studies, such as MRI are completed on all<br />
children with permanent hearing loss. Information obtained from radiologic<br />
studies permits identification of congenital ear abnormalities, such as enlarged<br />
vestibular aqueducts and cochlear nerve deficiency (small or absent<br />
eighth nerves), allowing audiologists and otolaryngologists to make informed<br />
decisions regarding appropriate habilitative options. Ophthalmology and genetics<br />
consultations also are offered to families. Children who receive a diagnosis<br />
of neural conduction disorder (auditory neuropathy/dyssynchrony)<br />
are referred for comprehensive neurological evaluation.<br />
For some children acoustic amplification is insufficient even with early<br />
identification and intervention (Davidson, 2006). The team approach at UNC<br />
allows for regular monitoring and review of children’s progress to determine<br />
those who are candidates for cochlear implantation and when implantation<br />
should occur. At weekly team meetings otolaryngologists, audiologists, and<br />
speech-language pathologists discuss children referred for cochlear implantation.<br />
Before scheduling a surgery date, speech-language pathologists communicate<br />
with the child’s parents, local therapists, and teachers to ensure that<br />
adequate services will be in place after implantation.<br />
Despite a well-integrated and collaborative team approach, many challenges<br />
remain. Appropriate management of young infants is time consuming<br />
and expensive. In addition to specialized instrumentation and clinical expertise,<br />
institutional support is needed to manage the financial burden associated<br />
262 Alberg, Wilson, & Roush
with providing comprehensive care when reimbursement from third-party<br />
payers or the family is insufficient to cover all costs associated with the<br />
program. In North Carolina, as in many states, only a few centers have the<br />
expertise and institutional support needed to provide specialized care to<br />
infants. Consequently, some families must travel a considerable distance to<br />
obtain services, and inevitably, some are unable to access services because of<br />
logistical challenges or expenses associated with transportation and followup.<br />
The difficulties have been especially acute for low-income rural families<br />
and those whose first language is not English. At this time, tracking and<br />
surveillance remain difficult for these and other disadvantaged families.<br />
Many families also experience financial pressures. Although state funding<br />
for hearing aids, FM systems, repairs and earmolds adequately covers children<br />
under the age of 3, when they turn three, financial assistance for hearing<br />
aids is limited to families who meet eligibility criteria. Given the high cost of<br />
hearing instruments, even families with relatively good incomes may be burdened<br />
by the cost of replacement hearing aids.<br />
In addition to challenges that exist at a systems level certain areas of audiology<br />
management remain difficult. For example, when infants show no<br />
response to both ABR and ASSR, a period of uncertainty exists until residual<br />
hearing status can be supplemented by behavioral assessment. A more mundane<br />
but crucial issue—acoustic feedback—remains a challenge when the<br />
degree of hearing loss requires high output levels from the hearing aid.<br />
The decision of when to offer cochlear implantation also can be difficult.<br />
When little or no progress with acoustic amplification is seen, the decision<br />
generally is uncomplicated, but when progress is measurable but less than<br />
anticipated, the reasons why may be difficult to determine. Further, as the<br />
age of implantation has declined, speech perception measures appropriate for<br />
use with older children cannot be used, making it necessary to rely on threshold<br />
measures and progress reports from early intervention specialists. It is<br />
hoped that promising new applications of cortical-evoked potentials and<br />
evaluation of infant speech perception using behavioral measures will eventually<br />
lead to evidenced-based clinical procedures helpful in addressing this<br />
important issue.<br />
Other populations for whom clinical management is controversial or uncertain<br />
are infants, toddlers, and young children with unilateral hearing loss<br />
and those with neural conduction disorders (auditory neuropathy/dyssynchrony).<br />
Clinical research in these areas is under way (Rance, 2005), but<br />
evidenced-based protocols for clinical management are lacking at this time.<br />
Important challenges remain, but it has been gratifying to see growth,<br />
development and coordination of pediatric assessment procedures, intervention<br />
services, and educational experiences for graduate students. But even the<br />
most comprehensive audiology, otolaryngology and other hospital- or clinicbased<br />
services are not sufficient to provide the support families need when<br />
hearing loss is first identified. Much of the success in North Carolina in recent<br />
Statewide EHDI Collaboration 263
years is attributable to partnerships among EHDI-related agencies within the<br />
state. BEGINNINGS has been a vital link between the hospital and early<br />
intervention services.<br />
BEGINNINGS for Parents of Children Who Are Deaf or<br />
Hard of Hearing<br />
For more than 20 years, BEGINNINGS has provided emotional support,<br />
unbiased information about all communication and education options and<br />
technical assistance to parents of children who are deaf or hard of hearing<br />
ages birth to 22. It also supports parents who are themselves deaf or hard of<br />
hearing and whose children may or may not have hearing loss. Further,<br />
information and assistance is available to professionals who work with these<br />
families.<br />
The belief that parents should be the primary decision makers for their<br />
child is a guiding principle for BEGINNINGS. When a child in North Carolina<br />
is diagnosed with a hearing loss, the parents are informed about BEGIN-<br />
NINGS and invited to talk with a parent educator. Audiologists are the<br />
primary source of family referral, though anyone can make a referral. In<br />
addition, parents of any child with hearing loss can obtain services until the<br />
child reaches age of 22. 1<br />
A parent educator is assigned to each family referred to BEGINNINGS.<br />
Identifying information about the family and child (e.g., address, phone numbers,<br />
age of identification, type of hearing loss) is entered into a database. This<br />
information is confidential, and specific procedures have been established for<br />
maintaining each family’s privacy. Parent educators obtain written permission<br />
from parents to share information with other professionals. Before contacting<br />
the family, the parent educator first contacts the referral source to gain<br />
additional information regarding the family and their needs. The parent educator<br />
then meets with the family at a convenient time and place, usually in the<br />
family’s home. Initially, home visits are to ensure that parents understand<br />
their child’s hearing loss and provide information regarding financial assistance,<br />
language development, communication options and early intervention<br />
services. Parent educators emphasize the importance of keeping all appointments<br />
with the audiologist and encourage parents to enroll their child as soon<br />
as possible in North Carolina’s early intervention program, which is described<br />
later.<br />
Although parent educators encourage parents to arrange their own appointments<br />
with various service agencies, BEGINNINGS provides assistance<br />
if needed. Parent educators work closely with the North Carolina Early<br />
1<br />
Services to adults in North Carolina are available through the NC Division of Services to the<br />
Deaf and Hard of Hearing.<br />
264 Alberg, Wilson, & Roush
Intervention Program for Children Who Are Deaf or Hard of Hearing (EIP).<br />
BEGINNINGS routinely provides information about families being served<br />
whose children are under 3 and services provided by BEGINNINGS. This<br />
“service progress log” is exchanged biweekly with the EIP and the regional<br />
Child Health Audiology Consultants from the North Carolina Early Hearing<br />
Detection and Intervention program. This communication tool has been invaluable<br />
in ensuring families are served in a timely manner as they move<br />
from diagnosis to intervention. Additionally, face-to-face meetings with representatives<br />
from the EIP, BEGINNINGS and the Division of Public Health<br />
occur quarterly to discuss strategies for improving communication, follow-up<br />
with families who have been challenging to find or serve and other issues that<br />
arise. Once services are in place, frequent contact with BEGINNINGS is not<br />
needed. Parent educators check in with families periodically and at specific<br />
educational milestones, such as transition from early intervention to preschool<br />
(see the article by Wilson, this issue, page 419).<br />
Important changes occur once children turn age 3 in North Carolina and in<br />
most states. Under Part C of the Individuals with Disabilities Education Act<br />
(IDEA), services from birth to 3 are set forth in an Individualized Family<br />
Service Plan (IFSP) and, in North Carolina, are administered by the Division<br />
of Public Health. After age 3, responsibility for educational services is transferred<br />
to the state Department of Public Instruction, necessitating the creation<br />
of an Individualized Education Program (IEP). Parent educators play an important<br />
role in assisting families in developing goals for their child’s IEP.<br />
They explain educational rights and accommodations, assist parents in articulating<br />
their goals for their child, and, if requested, accompany the parents<br />
to an IEP meeting to ensure that the plan is written in a way that will facilitate<br />
success in the educational setting. One of BEGINNINGS’ most important<br />
goals is to help parents develop the knowledge and skills they need to become<br />
advocates for their child and family, and parent educators focus on<br />
helping parents gain the confidence they need to accomplish this goal, even<br />
if it means encouraging them to function more independently.<br />
Parent educators also provide school-based support, such as classroom<br />
observations and teacher in-service education, to ensure children have the<br />
supports and modifications necessary for full access to classroom instruction.<br />
They advise the school about the need for assistive technology and explain<br />
the school’s responsibility to provide it. They accompany parents to audiologic<br />
appointments to support them as they learn about their child’s hearing<br />
loss and to help them understand the information provided. This service has<br />
been especially valuable to parents whose first language is not English. BE-<br />
GINNINGS has two Hispanic outreach/parent educators who are native<br />
Spanish speakers. They do not provide interpreter/translation services;<br />
rather, they support parents in their native language. Support is specific to<br />
each family but may involve helping parents understand their child’s audiogram<br />
and becoming aware of what is involved in managing their child’s<br />
Statewide EHDI Collaboration 265
hearing loss, including audiologic management and early education services,<br />
the types of services that are available to their child and family and assistance<br />
in accessing those services. In 2006, families whose primary language in the<br />
home is Spanish comprised approximately 14 percent of 287 families served.<br />
Presentations and workshops for teachers, school nurses, related professionals<br />
and students enrolled in North Carolina’s colleges and universities are<br />
part of the BEGINNINGS mission as well. Outreach programs recently were<br />
expanded to provide practicum opportunities for students in the UNC speech<br />
and hearing programs. These experiences allow students to interact with<br />
families in their natural environment.<br />
All of the services BEGINNINGS provides to parents and professionals in<br />
North Carolina are at no charge to families. The majority of funding comes<br />
through a state appropriation from the North Carolina General Assembly.<br />
This appropriation is directed to the OES and administered through a contract<br />
with BEGINNINGS. The contract specifies services to be provided and<br />
includes accountability requirements. Additional funding comes from other<br />
contracts, grants and private donations. Most of the support BEGINNINGS<br />
provides is to parents of young, newly identified children. Referrals to serve<br />
these families have more than doubled since the implementation of statewide<br />
newborn hearing screening.<br />
Because the service delivery system for early intervention (IDEA Part C)<br />
and the public schools (IDEA Part B) is administered by two separate state<br />
agencies and the nature of early intervention and public school education is<br />
different, parent educators have found it important to stay in close contact<br />
with parents during and after the transition. When children turn 2 1 ⁄2 years<br />
old, the parent educator contacts the family to discuss the transition and<br />
changes they will encounter when their child enters the local education<br />
agency (LEA). To facilitate this process, parent educators contact the early<br />
intervention program and work closely with the service provider as they<br />
prepare families for this important transition. For example, the parent educator<br />
frequently will accompany the early intervention teacher to the family’s<br />
home to discuss the upcoming transition. Together, the EI teacher and parent<br />
educator will help the parents set goals for their child’s IEP. Close communication<br />
among BEGINNINGS, the early intervention staff and LEA representatives<br />
is key to ensuring successful transitions.<br />
Accomplishments and Challenges<br />
The services BEGINNINGS provides to parents of children with hearing<br />
loss are tailored to each family’s specific needs. Parents have reported gratitude<br />
for the support provided by their parent educator, and surveys administered<br />
anonymously to parents in 2006 overwhelmingly confirmed their<br />
satisfaction with BEGINNINGS services. Of the 49 surveys returned, 94% of<br />
parents agreed or strongly agreed with all nine satisfaction statements.<br />
266 Alberg, Wilson, & Roush
Having served families for more than 20 years, BEGINNINGS has become<br />
an integral part of the EHDI programs in North Carolina. Based on growth in<br />
the number of families requesting services each year, awareness of and need<br />
for the services clearly is recognized. In fiscal year 2005, 294 families new to<br />
BEGINNINGS and 203 families returning for additional services were served.<br />
In fiscal year 2006, the number of families new to BEGINNINGS remained<br />
about the same (281) while the number of returning families increased to 250.<br />
Based on the first 7 months of fiscal year 2007, new families to BEGINNIGNS<br />
are expected again to remain about the same (296 projected) while the number<br />
of returning families is expected to increase significantly (354 projected).<br />
Support for 60 IEP meetings was provided, and staff delivered numerous<br />
in-services, workshops and presentations to a variety of professionals. A new<br />
challenge BEGINNINGS is facing is the influx of families who speak Spanish/<br />
Mexican dialects indigenous to a specific village or location in their country<br />
of origin. These families do not speak or read English or Spanish, and typically<br />
the only option for our Hispanic outreach/parent educators is to relyon<br />
a family member who knows the dialect. This is seen as an ongoing challenge<br />
as BEGINNINGS serves a growing number of families from diverse backgrounds.<br />
The BEGINNINGS model not only has grown in North Carolina, but also<br />
is being used in other states. In 2004, BEGINNINGS formed a partnership<br />
with the National Center for Hearing Assessment and Management<br />
(NCHAM) in Utah as part of a federally funded outreach project to provide<br />
technical assistance to state EHDI programs as they develop family support<br />
services. Four states are working to develop programs similar to BEGIN-<br />
NINGS, and 10 others have requested support as they explore options for<br />
family support. Within the NCHAM collaboration, BEGINNINGS staff provide<br />
training, demonstrating parent educator techniques for providing services<br />
and unbiased information to families in a supportive and culturally<br />
sensitive manner.<br />
North Carolina Early Intervention Services<br />
In North Carolina, Part C services under IDEA are administered by the<br />
Division of Public Health in the Department of Health and Human Services.<br />
A statewide system of 18 regional Children’s Developmental Services Agencies<br />
(CDSAs) provides a portal of entry into the state’s Infant-Toddler Program.<br />
At the CDSA, children receive evaluation services, eligibility<br />
determination and a service coordinator for those deemed eligible. The child’s<br />
service coordinator is responsible for developing the IFSP, which defines<br />
family and child goals and the necessary services to achieve these goals, and<br />
ensuring it is reviewed and modified as needed every six months.<br />
Once enrolled through the CDSA and assigned a service coordinator,<br />
Statewide EHDI Collaboration 267
infants and toddlers who are deaf or hard of hearing are eligible to receive<br />
services through the OES early intervention component. This component, the<br />
Early Intervention Program for Children Who are Deaf or Hard of Hearing,<br />
provides direct, specialized services to children and their families. At the state<br />
level the program is administered by the OES superintendent. Three regional<br />
directors are in place to manage the program at the local level. Each director<br />
supervises a team of licensed teachers of the deaf who, in turn, provide direct<br />
services to children and families. Each region also employs a licensed speechlanguage<br />
pathologist with expertise in auditory/oral and Auditory-Verbal<br />
approaches, Cued Speech, Total Communication, American Sign Language<br />
and the diagnosis and treatment of a variety of coexisting speech and language<br />
disorders.<br />
In the first few weeks after a child’s enrollment in the early intervention<br />
program, service providers administer a variety of assessments to collect<br />
baseline performance measures. Teachers and therapists obtain information<br />
regarding communication and language, social-emotional, cognitive, vocabulary<br />
and motor development. These assessments are conducted in an effort to<br />
supplement rather than supplant or duplicate the information gathered by<br />
the CDSA. In addition to the baseline evaluation, all early intervention service<br />
providers follow a protocol requiring administration of a variety of assessments<br />
every six months. Test results are interpreted, and written reports are<br />
provided to parents.<br />
In accordance with Part C of IDEA, services are implemented in natural<br />
environments, and for most children this is the home environment. Services<br />
may be delivered in day care settings. Most children receive at least one home<br />
visit per week from either the teacher of the deaf or the program’s speechlanguage<br />
pathologist, and efforts are made to schedule visits at times that are<br />
most convenient for the family.<br />
A primary goal of the program is to involve parents and other family<br />
members to the greatest extent possible. Administrators, teachers and related<br />
personnel recognize the importance of a family-centered approach, one that<br />
focuses on working primarily with regular caregivers rather than with children.<br />
Although the federal law mandates that early intervention services<br />
must occur in natural environments, this provision is not exclusively about<br />
where services are provided. Walsh, Rous and Lutzer (2000) emphasized that<br />
the natural environment mandate is not being met when providers work with<br />
children without including parents and caregivers in the session. In the North<br />
Carolina program an effort is being made to actively engage family members.<br />
During parent participation sessions, teachers and therapists address questions<br />
and concerns from the family, review the child’s progress since the<br />
previous session, identify goals, model strategies and techniques and guide<br />
parents as they practice effective strategies. Teachers and therapists also assist<br />
caregivers in identifying appropriate ways to carry over goals during the<br />
course of daily routines. Through this process parents understand their role<br />
268 Alberg, Wilson, & Roush
as primary teacher and the importance of daily interactions in achieving<br />
desired outcomes.<br />
Accomplishments and Challenges<br />
Every effort is made to enroll children and begin intervention immediately<br />
after referral. It is noteworthy that at no time in the referral process is a child<br />
placed on a waiting list. An additional strength of the program is the requirement<br />
that all professionals be licensed in deaf education and/or speechlanguage<br />
pathology. Thus, services are implemented by specialists rather<br />
than by generalists. Furthermore, providers must complete requirements to<br />
obtain the state’s Infant-Toddler Credential. To earn this credential, professionals<br />
must demonstrate knowledge, skills and expertise with the birth-tothree<br />
population, including parent-centered practices. The Infant-Toddler<br />
Credential, in combination with licensure in deaf education and/or speechlanguage<br />
pathology, is important to ensuring that children and families receiving<br />
early intervention services have access to appropriately trained<br />
personnel.<br />
Implementation of baseline and ongoing assessment practices provides<br />
practitioners with essential information to guide intervention, monitor progress<br />
and make changes as necessary to meet the family’s goals. Although this<br />
aspect of the program can be time consuming, routine assessment every six<br />
months for the birth-to-three population can be regarded as a program<br />
strength and a practice necessary for appropriate intervention. Because parental<br />
involvement is deemed an essential component for children with special<br />
needs to make appropriate progress, the program endeavors to empower<br />
parents as key decision makers and teachers and to actively involve them in<br />
each intervention session.<br />
With input from teachers, therapists and parents, administrators continually<br />
review program practices to determine components that are working<br />
well and to identify concerns and challenges. It is well documented that a<br />
substantial number of children who are deaf or hard of hearing also present<br />
with one or more disabilities (Picard, 2004). The Gallaudet Research Institute<br />
(2003) reported that as many as 40 percent of children who are deaf or hard<br />
of hearing have additional challenges ranging from severe cognitive impairments<br />
to mild learning differences that are not apparent until school age.<br />
Children enrolled in the early intervention program present with a variety of<br />
syndromes, developmental disabilities and medical conditions. Given the<br />
range of additional challenges, it is not always possible to identify and assign<br />
early intervention personnel who already have knowledge and expertise in<br />
the particular areas needed. In those situations early intervention personnel<br />
often find themselves in the position of working with children and families<br />
with special needs outside the scope of their existing training and expertise,<br />
at least initially. When faced with serving children with additional challenges,<br />
Statewide EHDI Collaboration 269
early intervention program personnel collaborate with other professionals<br />
both within the early intervention program and externally to identify resources<br />
to assist them in meeting the needs of these children with multiple<br />
disabilities.<br />
North Carolina, like many other states, has experienced rapidly growing<br />
Hispanic and Latino populations (Grieco, 2003), but as reported by Johnson<br />
(2004) only 5 to 10 percent of teachers of the deaf in the United States are<br />
members of an ethnic minority. Like many states, the current workforce of<br />
early intervention providers in North Carolina is primarily white, female,<br />
hearing and English speaking. Clearly, teachers from diverse backgrounds,<br />
those who speak more than one language and those trained in practices to<br />
meet the needs of children and families of various backgrounds are needed to<br />
enhance the effectiveness of family-centered intervention. During fiscal year<br />
2005-2006, 189 children were enrolled in the early intervention program, 37<br />
percent by age 6 months (J. Dunn, M. Hice, & L. Kendall, personal communication,<br />
September 2006). Although far short of our goal to enroll all children<br />
by age 6 months, the complexities associated with multiple disabilities, non-<br />
English-speaking families, loss to follow-up and other challenges often result<br />
in later identification and diagnosis, which in turn result in later enrollment<br />
in early intervention. North Carolina is well on its way to implementing<br />
Hearing Link, a statewide electronic tracking and data system. The pilot<br />
phase of Hearing Link began in February 2005 with full implementation<br />
expected by the end of calendar year 2008. This system has the potential to<br />
move the state forward in achieving the goal of enrollment in early intervention<br />
by age 6 months.<br />
In addition to ongoing efforts aimed at earlier enrollment for intervention<br />
services, future plans include review of assessment practices, instruments,<br />
frequency of administration and how results are reported and used to make<br />
decisions about service delivery. Additionally, the population of children and<br />
families served reflects students from varied racial and ethnic backgrounds,<br />
especially Latino/Hispanic cultures. Training and supporting early intervention<br />
providers working with children who have multiple disabilities, increasing<br />
parent participation and enhancing collaboration with professionals from<br />
other disciplines are key to meeting the needs of all children.<br />
How Are We Doing? Developing a Statewide<br />
Evaluation Plan<br />
Although significant challenges remain, North Carolina’s EHDI programs<br />
continue to expand and improve. Even so, it is difficult to determine the level<br />
of success without a comprehensive evaluation plan that includes measurement<br />
of child and family outcomes. In 2005, OES and BEGINNINGS, in<br />
cooperation with UNC, embarked on an effort to address this need. Recently<br />
a one-year pilot project addressed several important questions related to<br />
270 Alberg, Wilson, & Roush
statewide EHDI goals. What is the age of screening, diagnosis and intervention?<br />
If goals are not being achieved, what are the barriers to timely identification<br />
and intervention? Are children leaving early intervention with<br />
expressive and receptive language skills that are similar to those of their<br />
hearing peers? What are the children’s language outcomes as they move<br />
through preschool and at ages 4, 5 and 6? These questions are being addressed<br />
through data collection efforts involving staff from several EHDI<br />
components. Answering them will take time, but progress is under way.<br />
The OES–BEGINNINGS database now includes age of identification, age of<br />
hearing instrument fitting, age of early intervention, type and intensity of<br />
intervention and level of parent involvement. Also included is a description<br />
of the type and degree of hearing loss and, when known, the etiology. The<br />
database includes other conditions or disabilities that co-occur with hearing<br />
loss as well as specific language outcomes at age 3 based on the Preschool<br />
Language Scale-Fourth Edition (PLS-4; Zimmerman, Steiner, & Pond, 2002).<br />
The outcomes from the OES and BEGINNINGS longitudinal study should<br />
eventually provide the information needed to better evaluate the success of<br />
the state EHDI programs and provide guidance for program review and<br />
improvement. Preliminary findings indicate that nearly half the children are<br />
scoring within the average range for total language as measured by the PLS-4.<br />
Efforts are now underway to combine language measures with developmental<br />
assessments in order to better understand and interpret each child’s progress.<br />
Other Statewide Collaboration<br />
Child Health Audiology and Speech-Language Consultants<br />
North Carolina is fortunate to have the services of regional audiology and<br />
speech-language consultants employed by the Division of Public Health. Six<br />
child-health audiology consultants cover the entire state to provide a variety<br />
of services, including tracking infants referred from newborn screening,<br />
monitoring hospital compliance with screening protocols, conducting inservice<br />
training for screening personnel and providing technical assistance<br />
regarding newborn screening. Seven child-health speech-language consultants<br />
work with the audiology team to assist with tracking, surveillance and<br />
follow-up. They also assist families with applications for assistive technology<br />
and enrollment in children’s special health services.<br />
Continuing Education for Parents and Professionals<br />
Each year EHDI programs in North Carolina collaborate to plan and deliver<br />
a statewide conference on topics relevant to early identification, assessment<br />
and intervention. On even years UNC hosts a two-day pediatric<br />
Statewide EHDI Collaboration 271
audiology symposium that brings together approximately 100 pediatric audiologists<br />
and professionals from related disciplines. Topics include physiologic<br />
and behavioral assessment of infants, pediatric hearing aid fitting and<br />
audiologic management of special populations, such as infants with neural<br />
conduction disorders or unilateral hearing loss. During the meeting, EHDI<br />
program coordinators provide updates and information regarding statewide<br />
programs. In alternate years, a three-day statewide EHDI conference provides<br />
content to a broader audience, including parents, early intervention professionals,<br />
administrators, physicians, audiologists and speech-language pathologists.<br />
Funding from the Centers for Disease Control and Prevention and<br />
corporate support have made it possible to deliver these conferences at an<br />
affordable cost to attendees.<br />
Parent-to-Parent Support<br />
Hearing Impaired Toddlers and Children Have Unlimited Potential<br />
(HITCH-UP), a volunteer organization founded by parents and now active in<br />
two metropolitan areas, provides monthly support groups for families. Operated<br />
entirely by parents without public support, HITCH-UP plays an important<br />
role in providing peer support, exchange of information and adviceto<br />
professional organizations for improving and expanding services to families<br />
with children who are deaf or hard of hearing.<br />
Conclusion<br />
Statewide collaboration in the delivery of EHDI services is not easily<br />
achieved. Early identification, comprehensive audiologic and otologic evaluation,<br />
appropriate selection and fitting of hearing instruments and enrollment<br />
in family-centered early intervention services require a dedicated team of<br />
professionals working within a service delivery model that is accessible, well<br />
coordinated and appropriately funded. Table 1 describes some of the essential<br />
goals of a comprehensive EHDI system. Achieving them is an ongoing challenge<br />
that is never finished, but working toward full inclusion of families<br />
within a collaborative statewide model is our long-term objective.<br />
North Carolina has a longstanding commitment to families whose children<br />
are deaf or hard of hearing, but important challenges remain: a growing<br />
number of children with health conditions or disabilities that exist in addition<br />
to hearing loss, a growing number of non-English-speaking families and a<br />
shortage of early intervention providers with expertise and communication<br />
skills needed to serve these special populations. For children with neural<br />
conduction disorders or unilateral hearing loss, audiologists must make clinical<br />
decisions based on limited evidenced-based research. Decisions regarding<br />
whether and when to provide cochlear implantation also can be challenging,<br />
especially when the child is making some progress with amplification. For all<br />
272 Alberg, Wilson, & Roush
Table 1. Goals for a Comprehensive Statewide EHDI System<br />
• A comprehensive statewide hearing screening program using protocols and<br />
procedures appropriate for the well baby or neonatal intensive care unit<br />
nurseries.<br />
• Audiologic and otologic expertise necessary to provide timely and accurate<br />
diagnostic evaluations for infants referred from newborn screening.<br />
• Application of hearing technologies (hearing aids, cochlear implants)<br />
appropriate for the child and consistent with family preferences.<br />
• Capacity to provide advocacy, emotional support and information to parents<br />
and children regardless of communication option or place of residence.<br />
• Accurate and culturally sensitive information to families regarding all<br />
communication and education options given as soon as possible after diagnosis.<br />
• Well-qualified professionals with the knowledge, skill and specialization needed<br />
to serve young children with hearing loss, including those with coexisting<br />
disabilities and special needs.<br />
• A statewide plan for in-service and continuing education.<br />
• A tracking system that follows children and families through each component<br />
of the EHDI system.<br />
• A surveillance system for children at risk for late-onset or progressive hearing<br />
loss.<br />
• Regular meetings of key agencies to review and evaluate the EHDI system.<br />
• Developmental assessments every six months for children ages birth to 3.<br />
• Written reports to parents providing the results of formal and informal<br />
assessments.<br />
• Knowledge and cultural competence needed to serve non-English-speaking or<br />
bilingual families.<br />
• Administration of early intervention services by a central agency or, when a<br />
single agency is not possible, careful coordination of each early intervention<br />
component to enable uniformity and consistency in the application of policies,<br />
procedures and clinical practices.<br />
• Clearly articulated procedures to ensure successful transition from early<br />
intervention (Part C) services to school-based (Part B) services.<br />
• Comprehensive statewide evaluation of child and family outcomes to determine<br />
the strengths and needs of the EHDI system.<br />
• Participation and inclusion of families to the full extent desired in each<br />
component and at each level of the EHDI system.<br />
children, the transition from early intervention at age 3 to the local school<br />
system is an important one, and for many families it is a time of stress and<br />
uncertainty. Despite these challenges, progress will continue. We are confident<br />
that advances in technology combined with parent-professional collaboration<br />
will allow each child to achieve the best possible developmental<br />
outcomes.<br />
Acknowledgments<br />
We thank the following individuals for their contributions to the North<br />
Carolina EHDI programs and to the content of this program description:<br />
Statewide EHDI Collaboration 273
Cyndie Bennett, superintendent of the Office of Education Services; Carolyn<br />
Brown, director of the Carolina Children’s Communicative Disorders Clinic<br />
and CASTLE Preschool; and Patricia Roush, director of pediatric audiology,<br />
UNC Hospitals.<br />
References<br />
Bagatto, M., Moodie, S., Scollie, S., Seewald, R., Moodie, S., Pumford, J., etal.<br />
(2005). Clinical protocols for hearing instrument fitting in the Desired Sensation<br />
Level method. Trends in Amplification, 9(4), 199-226.<br />
Davidson, L. (2006). Effects of stimulus level on the speech perception abilities<br />
of children using cochlear implants or digital hearing aids. Ear and<br />
Hearing, 27(5), 493-507.<br />
Gallaudet Research Institute. (2003). Regional and national summary report of<br />
data from the 2002-2003 annual survey of deaf and hard of hearing children and<br />
youth. Washington, DC: GRI, Gallaudet University.<br />
Grieco, E. (2003). Foreign born Hispanics in the United States. Retrieved September<br />
2006 from http://www.migrationinformation.org.<br />
Joint Committee on Infant Hearing (2000). Year 2000 position statement: Principles<br />
and guidelines for early hearing detection and intervention programs.<br />
Johnson, H. (2004). U.S. deaf education teacher preparation programs: A look<br />
at the present and a vision for the future. American Annals of the Deaf, 149(2),<br />
75-91.<br />
Picard, M. (2004). Children with permanent hearing loss and associated disabilities:<br />
Revisiting current epidemiological data and causes of deafness.<br />
The Volta Review, 104, 221-236.<br />
Rance, G. (2005). Auditory neuropathy/dys-synchrony and its perceptual<br />
consequences. Trends in Amplification, 9(1), 1-43.<br />
Walsh, S., Rous, B., & Lutzer, C. (2000). The federal IDEA natural environments<br />
provisions: Making it work. In S. Sandall & M. Ostrosky (Eds.),<br />
Young exceptional children: Natural environments and inclusion (pp. 3-15).<br />
Longmont, CO: Sopris West.<br />
Zimmerman, I.L., Steiner, V.G., & Pond, R.E. (2002). Preschool Language Scale-<br />
4th edition. San Antonio, TX: Psychological Corporation.<br />
274 Alberg, Wilson, & Roush
The Volta Review, Volume <strong>106</strong>(3) (monograph), 275-298<br />
Family Empowerment:<br />
Supporting Language<br />
Development in Young<br />
Children Who Are Deaf or<br />
Hard of Hearing<br />
Jean L. DesJardin, Ph.D.<br />
The current model of early intervention with children who are deaf or hard of<br />
hearing emphasizes parental self-efficacy and involvement. The purpose of this study<br />
was to investigate the relationships between mothers’ self-efficacy beliefs and involvement<br />
and children’s language skills in a group of mothers of children who are deaf or<br />
hard of hearing and wear hearing aids (N = 32). Mothers completed a questionnaire<br />
(Scale of Parental Involvement and Self-Efficacy), and mother-child interactions were<br />
videotaped. Mothers’ self-efficacy beliefs related to developing their children’s speech<br />
and language were positively associated with higher level facilitative language techniques<br />
(recast and open-ended question), and one lower level technique (closed-ended<br />
question). Perceived involvement was also positively related to lower level techniques.<br />
Regression analyses indicated that the same higher level techniques were associated<br />
with children’s language skills. Findings present early intervention implications for<br />
professionals who work with families and children who are deaf or hard of hearing.<br />
Introduction<br />
Families of young children who are deaf or hard of hearing have many<br />
more opportunities today than in years past to develop a child’s spoken<br />
language skills. In the past, parents may have felt isolated in their search for<br />
resources related to hearing loss, with parent-professional partnerships traditionally<br />
marked by “power over” relationships that are defined by professionals<br />
presuming a higher sense of competence and greater knowledge than<br />
parents (Turnbull, Turbiville, & Turnbull, 2000). The present model of early<br />
intervention, referred to as the empowerment model (Turnbull & Turnbull,<br />
Jean DesJardin, Ph.D., is an advanced research associate in the Children’s Research and<br />
Evaluation (CARE) Center at House Ear Institute in Los Angeles, Calif.<br />
Empowering Families of Young Children Who Are Deaf 275
2001), places an emphasis on parental involvement in an equal partnership<br />
with the professional. In this professional-parent partnership, both work collaboratively<br />
to learn from each other about better ways to support the child’s<br />
language development.<br />
Current recommended practices for children who are deaf or hard of hearing<br />
emphasize the importance of not only parental involvement, but also<br />
parental competence. Both the Individuals with Disabilities Education Improvement<br />
Act (IDEIA, 2004) and the Division of Early Childhood (DEC) Recommended<br />
Practices in Early Intervention/Early Childhood Special Education (Sandall,<br />
McLean, & Smith, 2000) specify that one desired outcome of early intervention<br />
is for parents to perceive themselves as capable of supporting their<br />
children’s growth and development—parental self-efficacy. Parental beliefs<br />
will, in turn, make an impact on the child’s learning. The role of early intervention<br />
professionals is to support parents as they seek to gain access to the<br />
information they require to become competent and confident in the skills<br />
necessary to support their children’s development (McWilliam & Scott, 2001;<br />
Turnbull et al., 2000). Parents’ beliefs about their skills and involvement in<br />
their children’s early intervention program are critical components for children’s<br />
language learning.<br />
Parental Self-Efficacy<br />
Parental self-efficacy beliefs are defined as one’s sense of knowledge and<br />
abilities to perform or accomplish daily parenting tasks and roles. According<br />
to self-efficacy theory (Bandura, 1997), parental self-efficacy beliefs should<br />
incorporate (1) the level of specific knowledge pertaining to the behaviors<br />
involved in child-rearing and (2) the degree of confidence in one’s own ability<br />
to carry out the specific parental role. For example, Conrad, Gross, Fogg, and<br />
Ruchala (1992) noted that mothers’ increased knowledge alone did not result<br />
in better interactions with their young children. Increased knowledge and<br />
confidence together, however, resulted in more effective interactions with<br />
their hearing toddlers.<br />
A key component of self-efficacy theory states that parents’ efficacy beliefs<br />
are linked to the goals they have for their children (Bandura, 1989). These<br />
goals may translate into parental practices that support their children’s ability<br />
and persist until the goals are attained (Brody, Flor, & Gibson, 1999; DesJardin,<br />
2004). In other words, a person who is self-efficacious both knows about<br />
and persists in attempting a given task until success is achieved, whereas<br />
self-inefficacious individuals may have the knowledge needed, but may be<br />
unable to persist because of self-doubt. Thus, parents of children who are deaf<br />
or hard of hearing need the knowledge and skills necessary to build their<br />
children’s spoken language abilities, but, to achieve confidence in those skills,<br />
they also need to use those skills daily as they interact with their children.<br />
Indeed, maternal self-efficacy beliefs may influence mother-child interactions.<br />
In a sample of mothers and their hearing infants, Teti and Gelfand<br />
276 DesJardin
(1991) found that maternal self-efficacy mediated the negative relationship<br />
between mothers’ depressive symptoms and mothers’ behaviors reflecting<br />
responsiveness (e.g., warmth and sensitivity) to their infants. Maternal selfefficacy<br />
also remained positively associated with maternal responsiveness,<br />
after controlling for all other factors (e.g., income level, perceptions of infant<br />
difficulty and social-marital support). These findings suggest a link between<br />
mothers’ belief in their own abilities and maternal behavior.<br />
The link between mothers’ self-efficacy and maternal behaviors may need<br />
to be tailored to the specific needs of children who are deaf or hard of hearing.<br />
As suggested by Bandura (1989), parental perceived knowledge and confidence<br />
of specific skills must be measured for a particular population. Although<br />
there are parenting scales that tap into parents’ self-efficacy for other<br />
populations of children with disabilities (Akey, Marquis, & Ross, 2000; Trivette<br />
& Dunst, 2003), only one has been specifically designed for parents of<br />
young children who are deaf or hard of hearing (Scale of Parental Involvement<br />
and Self-Efficacy [SPISE]; DesJardin, 2003). Using this particular measure,<br />
DesJardin (2004) examined a sample of 24 mothers with preschool<br />
children with cochlear implants (mean age = 3.7 years). Mothers’ perceived<br />
self-efficacy in terms of developing their children’s language at the first timepoint<br />
in data collection (Time 1) related positively to children’s receptive and<br />
expressive language skills one year later (even after controlling for their<br />
child’s language skills at Time 1).<br />
In that same study at Time 2 (DesJardin, 2004; Time 2), with the inclusion<br />
of eight more mother-child dyads (N = 32), mothers’ sense of efficacy also was<br />
related to specific facilitative language techniques employed during motherchild<br />
interactions. Mothers who perceived themselves as more knowledgeable<br />
and competent in developing their children’s language skills provided<br />
their children with higher level language techniques (recast and open-ended<br />
questions). These same techniques were associated with better child language<br />
outcomes. Conversely, mothers who perceived themselves as less knowledgeable<br />
and competent in terms of developing their children’s language<br />
used lower level language techniques (linguistic mapping, directives and<br />
imitations). Although there is evidence to suggest that lower level techniques<br />
support language learning in hearing children with severe expressive language<br />
delays (Girolametto, Weitzam, Wiigs, & Pearce, 1999), these techniques<br />
did not seem to support preschool children with cochlear implants whose<br />
language ages were approximately 2 1/2 years. Consistent with Bandura’s<br />
model, mothers’ self-efficacy beliefs appear related to the developmental language<br />
goals endorsed for their children that may link to the ways in which<br />
parents interact with their children.<br />
Parental Involvement<br />
Parental involvement is another pivotal feature in present-day early intervention<br />
programs. Over the past several years, researchers have found that<br />
Empowering Families of Young Children Who Are Deaf 277
family involvement strongly influences parent and child outcomes for children<br />
who are deaf or hard of hearing (Calderon, Bargones, & Sidman, 1998;<br />
Calderon, 2000; Moeller, 2000). Parent involvement has been shown to relate<br />
positively to better parental communication exchanges with their children<br />
(Calderon et al., 1998), more advanced language outcomes in kindergartenaged<br />
children (Moeller, 2000) and later educational development (Calderon,<br />
2000; Calderon & Naidu, 2000; Yoshinaga-Itano, 2000). Moreover, Calderon<br />
and Naidu (2000) found mothers’ communication skills, rather than direct<br />
parental involvement in their children’s education programs, related significantly<br />
to their children’s language and early reading skills.<br />
The way in which parents are involved is also important for children’s<br />
language learning. Young children learn new words in the contexts of their<br />
daily experiences and, particularly, through interactions with their caregivers.<br />
According to the social-interactionist theory, the main emphasis is on<br />
caregiver linguistic input (Hoff-Ginsberg, 1997). Variation observed in children’s<br />
language skills may strongly be linked to the quantity (e.g., number of<br />
words) and quality (e.g., facilitative language techniques) of the caregiver’s<br />
linguistic input (Girolameto et al., 1999; Hart & Risley, 1999). For example,<br />
language techniques, parallel talk and recasting have been reported to relate<br />
positively to children’s rapid language development (Fey, Krulik, Loeb, &<br />
Proctor-Williams, 1999; Kaiser & Hancock, 2003).<br />
The Guidelines in Division of Early Childhood (DEC) Recommended Practices in<br />
Early Intervention emphasize parental responsiveness to children’s linguistic<br />
attempts for facilitating optimal language development (Cook, Tessier, Klein,<br />
& Armbruster, 2000; Sandall et al., 2000). Facilitative language techniques,<br />
such as imitation and expansion, may enhance language learning in young<br />
children at the single-word stage of language development (Girolametto et<br />
al., 1999). In contrast, language techniques such as parallel talk, recast and<br />
open-ended questions may elicit better responses from children who are at<br />
the two-to-three-word language level (Fey et al., 1999; Hulit & Howard, 1997;<br />
McNeil & Fowler, 1999). Indeed, language techniques that are “fine-tuned” to<br />
children’s language levels accelerate children’s expressive language development<br />
(Yoder & Warren, 1998).<br />
Hearing mothers of children who are deaf may intuitively adapt their<br />
language techniques to their children’s language level. Koester, Papousek, &<br />
Smith-Gray (2000) noted that “intuitive parenting is a proficient yet often<br />
overlooked communication technique used by parents when interacting with<br />
their deaf toddlers” (p. 56). For example, a mother may use a higher level<br />
technique, such as an open-ended question and, if the child does not respond,<br />
adapt her linguistic input to a lower level technique, such as a closed-ended<br />
question. In fact, hearing mothers of children who are deaf may intuitively<br />
make adaptations to their children’s linguistic abilities and demonstrate response-control<br />
behaviors (e.g., questioning) to compensate for their child’s<br />
deafness (Lederberg & Prezbindowski, 2000).<br />
278 DesJardin
Mothers’ sense of involvement may also influence language techniques<br />
while interacting with their children who are deaf. Findings from a longitudinal<br />
study of 24 mothers of children with cochlear implants (DesJardin, 2004)<br />
suggest that mothers’ perceived involvement in their children’s language<br />
development at Time 1 was related to higher level facilitative language techniques<br />
(parallel talk, recast and open-ended questions) one year later. Even<br />
after controlling for their children’s language ages at Time 1, these same<br />
techniques were also associated with their children’s language outcomes.<br />
Conversely, mothers who felt less involved in their children’s language program<br />
exhibited lower level language techniques (linguistic mapping, imitation<br />
and directive). Such lower level techniques, in turn, related negatively to<br />
their children’s language skills for this population of mothers and preschool<br />
children who are deaf and use cochlear implants. Furthermore, at Time 2, and<br />
with the inclusion of eight more mother-child dyads (N = 32), higher level<br />
language techniques, recast and open-ended questions remained predictor<br />
variables for children’s receptive and expressive language skills, respectively,<br />
even after controlling for children’s length of cochlear implant use for this<br />
group of mothers and their young children who use cochlear implants (Des-<br />
Jardin, 2006).<br />
Although there is theoretical and empirical support for self-efficacy and<br />
involvement in parents of young children and, specifically, children with<br />
cochlear implants, we do not know if the same holds true for mothers of<br />
young children who use hearing aids. The goal of the present study was to<br />
examine the relationships between mothers’ perceived self-efficacy and involvement,<br />
and children’s language outcomes, in a group of mothers and<br />
children who use hearing aids. This study addresses two research questions:<br />
(1) Are perceived maternal self-efficacy and involvement associated with<br />
facilitative language techniques during mother-child interactions? and (2)<br />
What are the maternal predictor variables for children’s language outcomes?<br />
Method<br />
Participants<br />
The author recruited mothers and children from the Children’s Auditory<br />
Research and Evaluation (CARE) Center, located at House Ear Institute in Los<br />
Angeles. The CARE Center serves children ages birth to 18 years and their<br />
families, providing a range of clinical services that include initial diagnosis of<br />
hearing loss and audiological follow-up services.<br />
Mothers<br />
Thirty-two mothers and children who are deaf or hard of hearing participated<br />
in this study. As shown in Table 1, mothers averaged 36 years of age<br />
Empowering Families of Young Children Who Are Deaf 279
Table 1. Demographic Characteristics for Mothers (N = 32)<br />
(range = 23-53), most had some level of college experience (78.2%) and the<br />
majority was in the upper middle-income level (62.5%) or above, with an<br />
average yearly income level of $50,000. Most of the mothers were Caucasian<br />
(53.1%) and spoke English (96.9%).<br />
Children<br />
Mothers’ Characteristics<br />
Mean; (SD)<br />
Range: 23-53 years<br />
Age 36.3; (6.25)<br />
Education level Elementary: 0; (0.0%)<br />
High School: 7; (21.9%)<br />
Some College: 3; (9.4%)<br />
Bachelor’s Degree: 7; (21.9%)<br />
Postgraduate: 15; (46.9%)<br />
Household income $100,000 = 10 (31.3%)<br />
Ethnicity Caucasian: 17; (53.1%)<br />
Latino: 11; (34.4%)<br />
Asian-American: 2; (6.3%)<br />
Other: 2; (6.3%)<br />
Primary home language English 31 (96.9%)<br />
Spanish 1 (3.1%)<br />
Marital status Married 29 (87.5%)<br />
Single 2 (9.4%)<br />
Divorced 1 (3.1%)<br />
All of the children presented with bilateral sensorineural hearing loss, were<br />
hearing aid users and had been enrolled in a family-centered intervention or<br />
school-age program for at least three months. As noted in their medical<br />
charts, none of the children had an additional disability or developmental<br />
delay. As displayed in Table 2, this is a heterogeneous group of children who<br />
ranged in age from 1.1-6.0 years (M = 3.0 years). As a group, the children were<br />
identified with hearing loss and enrolled in a family-centered early intervention<br />
program at approximately 12 months and received hearing aids at approximately<br />
18 months. At the time of testing, 25 children used an auditory/<br />
oral modality of communication and seven children used auditory/oral with<br />
some sign support. As per the Reynell Developmental Language Scales, children’s<br />
mean receptive and expressive language skills were 29 months and 25<br />
months, respectively.<br />
280 DesJardin
Table 2. Demographic Characteristics of Children (N = 32)<br />
Measures<br />
Children’s Characteristics<br />
Mean; (SD)<br />
(Range in months)<br />
Gender Boys: 17; (53.1%)<br />
Girls: 15; (46.9%)<br />
Age at testing 36 months (20.2)<br />
(25-72)<br />
Age at identification 11.7 months (15.9)<br />
(
In the self-efficacy section, mothers rate 10 questions on a Likert-type scale<br />
ranging from “not at all” (1) to “very much” (7). Questions in this section relate<br />
to mothers’ perceptions about their level of influence on their child’s auditory<br />
development. The questions selected were derived from using exploratory<br />
factor analysis. Two subscales emerged and Cronbach’s alpha coefficients<br />
suggested high internal consistency for each subscale: (1) Maternal Self-<br />
Efficacy of Sensory Device Use, the extent to which a mother believes that she<br />
has the knowledge and skills to following through with prescribed sensory<br />
aid maintenance; and (2) Maternal Self-Efficacy of Child’s Speech-Language<br />
Development, the extent to which a mother believes that she has the knowledge<br />
and skills to affect her child’s speech and language development (see<br />
Appendix for subscale items and Crochbach’s [1951] alpha coefficients, ranging<br />
from 0.80-0.87).<br />
The involvement section consists of 11 questions on a Likert-type scale<br />
ranging from “not at all” (1) to “very much” (7). The queries in this section<br />
include items related to a mother’s perception of her involvement in her<br />
child’s sensory device use and family-centered intervention or school-age<br />
program. Using exploratory factor analysis, two subscales emerged: (1) Maternal<br />
Involvement of Sensory Device Use, the extent to which a mother<br />
believes that she is involved in her child’s use of sensory device and listening<br />
development; and (2) Maternal Involvement of Child’s Speech-Language Development,<br />
the extent to which a mother believes that she is involved in her<br />
child’s speech-language development and family-centered intervention program<br />
or school-age program (e.g., therapy, home visits and IFSP/IEP meetings)<br />
(see Appendix for subscale items and Cronbach’s [1951] alpha<br />
coefficients ranging from 0.76-0.83).<br />
The SPISE was developed and pilot tested with a focus group that consisted<br />
of three audiologists, a teacher of the deaf, a speech-language pathologist and<br />
two parents of children with hearing loss (one child with hearing aids and<br />
one child with a cochlear implant). Thus, the SPISE offers secure content<br />
validity. Although the predictive validity of the SPISE is unknown at this<br />
time, future avenues of research will investigate the relationships between<br />
items on the SPISE and performance on a variety of observed tasks during<br />
parent-child interactions.<br />
(2) The Reynell Developmental Language Scales, Third Edition (RDLS III)<br />
(Reynell & Gruber, 1990). The RDLS-III are individually administered tests of<br />
verbal comprehension and expressive language skills for young children. The<br />
RDLS III uses toys (e.g., ball, doll), pictures of objects (e.g., window, flower)<br />
and real objects (e.g., spoon, cup) to elicit responses from the child. The two<br />
scales of the RDLS have been widely used both with hearing children and<br />
children who are deaf (Stallings, Gao, & Svirsky, 2002; Svirsky, Robbins, Kirk,<br />
Pisoni, & Miyamoto, 2000). The RDLS calculates raw scores and standard<br />
scores and their age equivalents based on normative data from children with<br />
normal hearing. The present investigation used auditory-oral raw scores in<br />
282 DesJardin
the data analyses because almost all of the children had standard scores that<br />
were below the floor of 63 or 64. There was, however, sufficient variability in<br />
the raw scores for meaningful statistical analysis.<br />
(3) Mother-Child Interactions. Mothers and children engaged in free play<br />
and storybooks together. During free play, mothers were asked to engage<br />
their children with two Mr. Potato Head (Lerner, 1952) fun activity kits (one<br />
kit designed to construct a female potato and one kit designed to construct a<br />
male potato) for seven minutes. The Mr. Potato Head activity kits came with<br />
various parts to engage the children in fantasy play (e.g., scuba goggles,<br />
dress-up shoes, various hats). Mothers were instructed to “play with your<br />
child as you would normally do at home when you have free time” and to<br />
interact with their children using whatever mode or modes of communication<br />
they use normally at home (auditory/oral or auditory/oral with sign support).<br />
Following free play, mothers were provided two storybooks, What Next,<br />
Baby Bear! by Jill Murphy (1983) and Frog, Where Are You? by Mercer Mayer<br />
(1969). What Next, Baby Bear! is a relatively short, colorfully illustrated book<br />
appropriate for preschoolers with a fantasy narrative about a little bear’s<br />
travel preparations for a trip to the moon. This book has been used in several<br />
other mother-child interaction studies with young hearing children (Weizman<br />
& Snow, 2001). Frog Where Are You? is a relatively short, wordless picture<br />
book and has been used in more than 150 studies studying children acquiring<br />
50 different languages and investigating children’s narrative language development<br />
(Berman & Slobin, 1994; Hoff-Ginsberg, 1997). Mothers were instructed<br />
to “read with your child as you would normally do at home when<br />
you have time,” choosing either book to begin and then continuing with the<br />
other book when they were finished with the first book.<br />
Procedures<br />
Prospective participants received an invitation letter and stamped, selfaddressed<br />
postcard. Those interested in the study completed the postcard<br />
and returned it to the CARE Center to schedule appointments. Mothers who<br />
indicated interest in participating in the study received the SPISE questionnaire<br />
in the mail two weeks before their scheduled appointments and either<br />
brought the completed questionnaire to the appointment or mailed it to the<br />
House Ear Institute in a stamped, self-addressed envelope.<br />
The mother-child interaction sessions were conducted in a comfortable<br />
playroom at the CARE Center. The first seven minutes consisted of free play.<br />
Following free play, the mothers and children interacted with the two books<br />
described above for approximately 5 minutes each. Interactions were videotaped<br />
using a digital camera (Canon Optura 30) hidden behind a one-way<br />
mirror. Following the videotaping session, the children were administered<br />
Empowering Families of Young Children Who Are Deaf 283
the Reynell Developmental Language Scales. All language assessments were<br />
given in a child’s primary mode of communication (auditory/oral or auditory/oral<br />
with sign support). For this study, the analyses used auditory-oral<br />
raw scores.<br />
Transcription and Reliability<br />
Data Preparation<br />
All speech, vocalizations and signs produced by the mother and child were<br />
transcribed in full by the author, using the Codes for the Human Analysis of<br />
Transcripts (CHAT) transcription system. To establish inter-rater reliability of<br />
transcription, a speech-language pathologist from the CARE Center transcribed,<br />
in full, 10% of the randomly selected videotaped data. The calculation<br />
of word-by-word correspondence yielded a high reliability between transcribers,<br />
ranging from 95-98% agreement for mothers and children’s intelligible<br />
verbal utterances and 88-93% reliability for mothers’ and children’s<br />
utterances that also contained some signs. The analyses used mother and<br />
child vocal and signed utterances.<br />
Each mother’s transcribed utterance — linguistic phrase or sentence — was<br />
coded for one higher level and lower level facilitative language technique<br />
(during both free play and storybook conditions, as defined in Tables 3 and<br />
4, respectively). Proportional scores of each facilitative language technique<br />
were calculated and used in the analyses to avoid penalizing less talkative,<br />
yet very responsive, mothers. Accordingly, proportional data were calculated<br />
by dividing the total number of each language technique by the overall number<br />
of mothers’ linguistic attempts. The CARE Center speech-language pathologist<br />
coded 25% of the transcripts, randomly selected to establish testretest<br />
reliability. A line-by-line analysis revealed high agreement between<br />
coders, ranging from 94-98% reliability.<br />
Results<br />
Relationships Between Maternal Perceived Self-Efficacy and Facilitative<br />
Language Techniques<br />
Pearson product correlations were conducted to examine the relationships<br />
between the two self-efficacy subscale items (sensory device use and speechlanguage<br />
development) and the 10 facilitative language techniques. As displayed<br />
in Table 5, statistically significant positive relationships emerged<br />
between self-efficacy in terms of developing their children’s speech-language<br />
and two higher level facilitative language techniques, recast (r = 0.48; p < 0.05)<br />
and open-ended question (r = 0.38; p < 0.05). A significant positive relationship<br />
also emerged between this same self-efficacy subscale item and one<br />
284 DesJardin
Table 3. Definitions and Examples of Higher Level Facilitative Language Techniques<br />
Higher Level Facilitative<br />
Language Techniques Definition Examples<br />
Child is playing with a toy car and mother<br />
says, “You are making the car go fast!”<br />
Child says, “Doggie go,” and mother says,<br />
“The doggie is going.”<br />
Child says, “Doggie go,” and mother says,<br />
“Did the doggie go?”<br />
Mother says, “Tell me more about where<br />
the bear is going. How do you think the<br />
bear is going to get there?”<br />
Parallel talk Providing linguistic input directly about what the<br />
mother or child is doing, as long as child is<br />
directly looking at the activity.<br />
Expansion Repeating the immediate preceding child<br />
utterance approximation or verbalization by<br />
adding one or more morphemes or words<br />
without adding new information.<br />
Recast Repeating the immediate preceding child<br />
utterance approximation or verbalization in a<br />
question format.<br />
Open-ended question Stating a phrase or question that the child can<br />
answer in a two- to three-word phrase or more.<br />
Empowering Families of Young Children Who Are Deaf 285
Table 4. Definitions and Examples of Lower Level Facilitative Language Techniques<br />
286 DesJardin<br />
Lower Level Facilitative<br />
Language Techniques Definition Examples<br />
Mother says, “That is a mustache,” “There is<br />
the moon” or “I see the bear.”<br />
Child hands mother a toy dog and vocalizes;<br />
mother says, “Doggie.” Child pushes a book<br />
away and vocalizes; mother says, “All<br />
done.”<br />
“Is that the bear?” or “Do you like that book?”<br />
Child says, “Hat,” and mother says, “Yeah,<br />
hat.” Child says, “Potato has a hat,” and<br />
mother says, “Yes, a hat.”<br />
“Uh huh, you got it!” “That’s right!” “Yeah!”<br />
“Very good.” “Let’s see.” “Uh oh!” ”Wow!”<br />
“Come here.” “Read the word.” “Turn the<br />
page.” “Listen to me.” “Sit down.” “Look<br />
right here.”<br />
Label Labeling a toy or picture (child may or may<br />
not be looking directly at the object).<br />
Linguistic mapping Putting into words or interpreting the child’s<br />
intended message using the context as a clue<br />
(child uses a preceding vocalization that is<br />
not recognizable as an approximation of a<br />
word).<br />
Close-ended question Stating a question that the child can answer<br />
with only one word.<br />
Imitation Direct repeat or imitation of child’s preceding<br />
vocalization or verbalization without adding<br />
any new words. Mother may reduce the<br />
sentence by imitating fewer words.<br />
Comment Stating a comment to keep the conversation<br />
going or to positively reinforce the child.<br />
Directive Telling the child to do something or<br />
commanding a behavior.
Table 5. Relationships Between Maternal Self-Efficacy Subscale Items and Mothers’<br />
Facilitative Language Techniques<br />
Facilitative Language<br />
Techniques<br />
Maternal Self-Efficacy:<br />
Sensory Device<br />
Maternal Self-Efficacy:<br />
Speech and Language<br />
Parallel talk 0.20 0.07<br />
Expansion 0.07 0.33<br />
Recast 0.04 0.48*<br />
Open-ended question 0.33 0.38*<br />
Linguistic mapping 0.08 0.09<br />
Closed-ended question 0.24 0.46*<br />
Imitation 0.12 0.24<br />
Label –0.11 –0.11<br />
Directive –0.34 –0.57**<br />
Comment –0.32 –0.16<br />
*p < 0.05; **p < 0.01<br />
lower level technique, closed-ended question (r = 0.46; p < 0.05), and a negative<br />
relationship emerged with the lower level technique, directive (r = –0.57;<br />
p < 0.01).<br />
Relationships Between Maternal Perceived Involvement and Facilitative<br />
Language Techniques<br />
Two self-efficacy subscale items (sensory device use and speech-language<br />
development) were correlated with the 10 facilitative language techniques. As<br />
Table 6 illustrates, perceived involvement in terms of the child’s sensory<br />
device related positively with one higher level technique, open-ended question<br />
(r = 0.41; p < 0.05), and had a negative association with one lower level<br />
technique, directive (r = –0.65; p < 0.01). There were no statistically significant<br />
associations between mothers’ perceived involvement of their child’s speechlanguage<br />
development and any higher level techniques; however, perceived<br />
involvement related positively to two lower level techniques, closed-ended<br />
question (r = 0.48; p < 0.05) and imitation (r = 0.38; p < 0.05).<br />
Further correlation item analyses with the questions pertaining to this particular<br />
parental involvement subscale revealed statistically significant positive<br />
and negative relationships between the subscale items and lower level<br />
techniques. Mothers’ perceived notion of difficulty to check and listen to the<br />
children’s hearing aids on a daily basis related positively to the use of the<br />
imitation technique, (r = 0.37; p < 0.05). There were also positive relationships<br />
between mothers’ perception of how much speech-language therapists or<br />
early interventionists demonstrate listening-language activities and mothers’<br />
comfort level in performing listening-language techniques in their homes<br />
without a professional present, and the use of the lower level technique,<br />
closed-ended question (r = 0.40; p < 0.05 and r = 0.51; p < 0.01, respectively).<br />
Empowering Families of Young Children Who Are Deaf 287
Table 6. Relationships Between Maternal Involvement Subscale Items and<br />
Mothers’ Facilitative Language Techniques.<br />
Facilitative Language<br />
Techniques<br />
Maternal Involvement:<br />
Sensory Device<br />
Maternal Involvement:<br />
Speech and Language<br />
Parallel talk 0.25 –0.16<br />
Expansion 0.19 0.7<br />
Recast 0.25 0.19<br />
Open-ended question 0.41* 0.26<br />
Linguistic mapping 0.14 –0.12<br />
Close-ended question 0.28 0.48*<br />
Imitation 0.15 0.38*<br />
Label –0.15 –0.14<br />
Directive –0.65** –0.44*<br />
Comment –0.25 0.24<br />
*p < 0.05; **p < 0.01<br />
Relationships Between Facilitative Language Techniques and Children’s Receptive and<br />
Expressive Language Skills<br />
Pearson product correlations were conducted between the 10 facilitative<br />
language techniques and children’s receptive and expressive language raw<br />
scores. Statistically significant positive relations emerged between two higher<br />
level techniques, recast (r = 0.64; p < 0.01; r = 0.63; p < 0.01) and open-ended<br />
question (r = 0.58; p < 0.01; r = 0.60; p < 0.01) for children’s receptive and<br />
expressive language respectively. Negative associations emerged between<br />
two lower level techniques, label (r = –0.60; p < 0.01; r = –0.53; p < 0.01) and<br />
directive (r = –0.54; p < 0.01; r = –0.50; p < 0.05) and children’s receptive and<br />
expressive language outcomes, respectively. Generally speaking, this pattern<br />
of correlation is consistent with the view that mothers’ use of higher level<br />
facilitative language techniques tends to be associated with more advanced<br />
development in children’s language skills.<br />
Stepwise regression analysis was performed, controlling for children’s<br />
pure-tone average and length of hearing aid use, to further explore the relationships<br />
between mothers’ facilitative language techniques and children’s<br />
receptive and expressive language skills. The higher- and lower level facilitative<br />
techniques that related positively to mothers’ self-efficacy and involvement<br />
in the previous analyses were included in the regression analyses<br />
(recast, open-ended question and closed-ended question). Children’s puretone<br />
average and length of hearing aid use was entered in block 1, and<br />
facilitative techniques were entered sequentially in block 2 and block 3. As<br />
shown in Table 7, pure-tone average and length of hearing aid use accounted<br />
for a significant amount of the variance in children’s receptive language skills<br />
(45%). Mothers’ use of recast and open-ended question were also significant<br />
predictor variables of children’s receptive language, for a total of 23.3% of the<br />
288 DesJardin
Table 7. Summary of Regression Models for Mothers’ Linguistic Input and<br />
Children’s Receptive Language Skills<br />
Regression Models R R 2<br />
variance. Similarly, children’s pure-tone average and length of hearing aid<br />
use also accounted for 44% of the variance in children’s expressive language<br />
skills, with the use of recast and open-ended question accounting for an<br />
additional 24.3% (see Table 8).<br />
Discussion<br />
Change in R 2<br />
Significance in<br />
F Change<br />
Model 1 0.674 0.454 0.000<br />
Model 2 0.771 0.594 0.140 0.005<br />
Model 3 0.829 0.687 0.093 0.010<br />
Predictors <br />
Pure tone average in better ear –0.295 0.016<br />
Length of hearing aid use 0.230 0.094<br />
Open-ended question 0.348 0.007<br />
Recast 0.370 0.010<br />
Early intervention practices for young children focus on empowering families<br />
and building their sense of self-efficacy and involvement as they support<br />
their children’s early development (DesJardin, 2005; McWilliam & Scott, 2002;<br />
Sandall et al., 2000; Turnbull & Turnbull, 2001). Despite these recommended<br />
practices, few studies have investigated parents’ sense of self-efficacy and<br />
involvement in their children’s early intervention program for families of<br />
children who are deaf or hard of hearing. Of particular interest were the<br />
relationships between maternal facilitative techniques and children’s receptive<br />
and expressive language skills. Results from this study generally confirm<br />
previous findings among young children who are deaf (DesJardin, 2004) in<br />
terms of the positive associations between maternal perceived self-efficacy<br />
and involvement, and facilitative language techniques. In essence, early intervention<br />
implications may be further generalized to a larger population of<br />
young children who are deaf or hard of hearing.<br />
Similar to the DesJardin (2004) study on preschool children with cochlear<br />
implants, findings from this study provide evidence that maternal perceived<br />
self-efficacy and involvement in terms of developing children’s speechlanguage<br />
development (rather than sensory device use) relates to specific<br />
higher level facilitative techniques during mother-child interactions for children<br />
with hearing aids. These same techniques are also associated with children’s<br />
language skills. Furthermore, these higher level techniques have been<br />
noted in prior research to facilitate later language skills in preschool hearing<br />
children (Baumwell, Tamis-LeMonda, & Bornstein, 1997; Kaiser & Hancock,<br />
2003).<br />
Empowering Families of Young Children Who Are Deaf 289
Table 8. Summary of Regression Models for Mothers’ Linguistic Input and<br />
Children’s Expressive Language Skills<br />
Regression Models R R 2<br />
Change in R 2<br />
Significance in<br />
F Change<br />
Model 1 0.666 0.444 0.000<br />
Model 2 0.771 0.595 0.151 0.004<br />
Model 3 0.829 0.688 0.092 0.010<br />
Predictors <br />
Pure tone average in better ear –0.315 0.010<br />
Length of hearing aid use 0.197 0.149<br />
Open-ended question 0.364 0.005<br />
Recast 0.369 0.010<br />
Maternal beliefs about their children’s language learning, however, also<br />
were positively associated with one lower level technique (closed-question).<br />
It could be that mothers in this study were intuitively adapting their language<br />
techniques to their children’s linguistic attempts. As prior research has suggested<br />
(Lederberg & Prezbindowski, 2000), hearing mothers of children who<br />
are deaf may intuitively make adaptations to their children’s linguistic abilities<br />
and demonstrate response-control behaviors (e.g., questioning) to compensate<br />
for their children’s deafness. Mothers in this study who felt more<br />
knowledgeable and confident in developing their children’s language also<br />
may have been tailoring the language techniques to their children’s linguistic<br />
attempts.<br />
Contrary to the findings in the DesJardin (2004) study, no significant relationships<br />
emerged between mothers’ perceived involvement and any of the<br />
higher level facilitative language techniques for the mothers in this study. On<br />
the other hand, perceived involvement in developing their children’s speech<br />
and language skills related positively to two out of the six lower level techniques<br />
(imitation and closed-ended questions). These same techniques were<br />
not related to their children’s language abilities. These findings suggest that<br />
mothers of children with hearing aids may be receiving varied information<br />
regarding how to support their children’s language learning. Furthermore, it<br />
is plausible that early intervention professionals working with these mothers<br />
and children may be providing inaccurate information regarding language<br />
techniques to support the children’s language skills. In fact, further subscale<br />
item analyses revealed that there was a positive relationship between two<br />
items on the SPISE questionnaire; (1) mothers’ sense of comfort when conducting<br />
listening-language activities at home without the presence of the<br />
professional and (2) the frequency with which early intervention professionals<br />
demonstrated listening-language techniques to mothers and mothers’ use<br />
of a lower level technique (closed-ended question).<br />
Facilitative language techniques must be tailored to children’s language<br />
290 DesJardin
level. As children approach the two-to-three-word stage of language development,<br />
particular techniques are essential for them to develop more complex<br />
language. Facilitative language techniques such as parallel talk (Yoder, Mc-<br />
Cathren, Warren, & Watson, 2001), recast (Fey et al., 1999) and open-ended<br />
questions (Lilly & Green, 2004) encourage conversation, eliciting more complex<br />
grammar and syntactic skills. These techniques are used more frequently<br />
after children achieve a more advanced level of lexical and grammatical understanding<br />
(Hulit & Howard, 1997). Conversely, techniques such as linguistic<br />
mapping, imitation and closed-ended questions are more didactic in<br />
nature and necessary for children who are at the prelinguistic and one-word<br />
level of language development (Yoder et al., 2001).<br />
Implications for Family-Centered Early Intervention<br />
Early intervention programs emphasize the importance of supporting family<br />
strengths and collaborating with caregivers to facilitate better interactions<br />
with their children (Chidress, 2004; Roper & Dunst, 2003). By tailoring their<br />
behaviors to the strengths of individual families, interventionists hope to<br />
provide caregivers with a sense of confidence and competence — selfefficacy<br />
— about their children’s current and future learning and development<br />
(Dunst, 2000; Sonnenstrahl-Benedict & Raimondo, 2003). In turn, parental<br />
self-efficacy of certain skills (e.g., facilitative language techniques) may<br />
enhance children’s language learning (DesJardin, 2006). Thus, encouraging a<br />
mother’s sense of efficacy in developing her child’s language skills is an<br />
important goal in early intervention and should be taken into consideration<br />
when formulating an Individual Family Service Plan (IFSP) or Individual<br />
Education Plan (IEP).<br />
One way to enhance parents’ self-efficacy is to employ a mentorship approach.<br />
In a mentorship model, parents receive hands-on training and practice<br />
with constructive and encouraging feedback based on the parent’s<br />
strengths and needs. Providing caregivers continual feedback enhances their<br />
generalization of newly learned techniques across various activities and settings<br />
(Woods, Kashinath, & Goldstein, 2004). Ultimately, the goal of any<br />
mentorship relationship is for parents to achieve independent, confident use<br />
of techniques that will enhance their children’s language development.<br />
Through a mentorship model, parents would also receive ongoing demonstrations<br />
of skills. A finding of great concern from this study was the significant<br />
positive relationship between mothers’ sense of involvement in their<br />
children’s speech-language development and lower level language techniques.<br />
Further analyses of the data suggested that mothers’ perception of<br />
how much early intervention professionals or therapists demonstrate listening-language<br />
activities was related to mothers’ use of lower level language<br />
techniques. Early intervention programs highlight the importance of embedding<br />
language techniques in naturally occurring interactions with children<br />
within daily routines and activities (Dunst, 2000; Fewell & Deutscher, 2004;<br />
Empowering Families of Young Children Who Are Deaf 291
Roper & Dunst, 2003). Everyday occurrences such as mealtime, hand washing,<br />
playing with toys and bedtime routines are common in most families.<br />
Parents may benefit from a visual reminder of learning opportunities and<br />
activities they can use during the week (Dunst et al., 2001). Moreover, professionals<br />
working with families of children with hearing aids must demonstrate<br />
how to embed facilitative language techniques in everyday natural<br />
language learning experiences (Woods et al., 2004).<br />
Language techniques also should be further tailored to a child’s language<br />
level. According to Vygotskian theory (1962), children develop linguistically<br />
through caregiver interactions that reflect children’s zone of proximal development<br />
(ZPD). A child’s ZPD is defined as the distance between a child’s<br />
current level of development and the level in which the child can function<br />
with adult assistance. For example, for a child who is deaf or hard of hearing<br />
whose language age is at the prelinguistic stage of development, parents’ use<br />
of lower level language techniques (e.g., imitations and expansions) that have<br />
been shown to facilitate language learning in younger hearing children reflect<br />
the child’s zone of proximal development. For preschool children who are at<br />
the two- to three-word linguistic stage, however, higher level language techniques<br />
(recast and open-ended questions) best facilitate children’s language<br />
development. When parents use this form of support, they are helping their<br />
children gain communicative competence and confidence (Vygotsky, 1978;<br />
White, 1985).<br />
Study Limitations<br />
A few limitations of the present study should be mentioned. First, the<br />
sample of mothers in this study may not be a true reflection of mothers and<br />
children in the general population of families of children who are deaf or hard<br />
of hearing. Although many families from lower socioeconomic status and<br />
diverse cultures come to the CARE Center for services, mothers in this study<br />
were all in the middle- to above-average income range with some college<br />
experience. Consequently, the results of this study must be viewed cautiously<br />
when applied to mothers of lower socioeconomic status and mothers in other<br />
geographical locations. Furthermore, the facilitative language techniques examined<br />
in this study may not be consistent with the child interactions that<br />
typify parenting styles in other cultures (van Kleeck, 1994).<br />
Second, the various kinds of family-centered early intervention programs<br />
were not investigated in this study. The families who participated in this<br />
study came from various states and public and/or private family-centered<br />
intervention programs. Within the kinds of programs offered, early intervention<br />
professionals may employ various teaching and communication methodologies<br />
(Auditory-Verbal, Total Communication, etc.). It is most probable<br />
292 DesJardin
that the mothers received different services and, possibly, different instructions,<br />
regarding intervention language techniques. Future work controlling<br />
for the different types of family-centered intervention programs will be fruitful.<br />
Third, the SPISE is a self-report measure of self-efficacy and involvementin<br />
parents. Previous research has suggested that, for many social constructs,<br />
self-report measures may not necessarily reflect what the parents actually do<br />
in their homes (Akey et al., 2000). Although self- reports of how people<br />
perceive their knowledge and competence may be reasonably valid, selfreports<br />
of participatory behavior may show less consistency (e.g., parents’<br />
involvement in the development of their children’s IFSP). Nevertheless, the<br />
SPISE offers researchers and practitioners valuable information in terms of<br />
parents’ perception of specific skills related to their children’s sensory device<br />
and speech-language development (see DesJardin, 2003, for further research<br />
on and practical use of the SPISE).<br />
Summary<br />
Both the Individuals with Disabilities Education Improvement Act (IDEIA, 2004)<br />
and the Division of Early Childhood (DEC) Recommended Practices in Early Intervention/Early<br />
Childhood Special Education state the importance of not only<br />
family involvement, but also early intervention practices implemented in a<br />
manner that strengthens parents’ sense of competence in guiding their children’s<br />
early development. Findings from this study highlight the influence of<br />
parental self-efficacy and involvement on children’s spoken language development.<br />
Families of children who are deaf or hard of hearing could benefit<br />
from early intervention programs that capitalize on parents’ sense of efficacy<br />
and facilitative language techniques that are tailored to their children’s language<br />
level.<br />
Acknowledgments<br />
The author wishes to express a very special thank you to the mothers and<br />
children who participated in this study. Support for this research was provided<br />
by the National Institute on Deafness and Other Communication Disorders<br />
(NIDCD) of the National Institutes of Health, grant #R01DC006238.<br />
The author would like to thank Laurie Eisenberg, Ph.D. for her valuable<br />
contributions throughout this project. Gratitude is also expressed to the<br />
CARE Center’s research language consultant, Donna Thal, Ph.D., who provided<br />
expertise and guidance in videotape analyses, and Kathleen Lehnert,<br />
M.A., CCC-SLP, for transcription and videotape coding.<br />
Empowering Families of Young Children Who Are Deaf 293
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Empowering Families of Young Children Who Are Deaf 297
Appendix<br />
Scale of Parent Involvement and Maternal Self-Efficacy (SPISE) Subscale Items for Maternal<br />
Self-Efficacy and Parent Involvement<br />
Maternal Self-Efficacy Parent Involvement<br />
298 DesJardin<br />
Child’s Speech and Language<br />
Internal Consistency Reliability;<br />
Cronbach’s = 0.83<br />
Child’s Sensory Aid Use<br />
Internal Consistency Reliability;<br />
Cronbach’s = 0.76<br />
Child’s Speech and Language<br />
Internal Consistency Reliability;<br />
Cronbach’s = 0.87<br />
Child’s Sensory Aid Use<br />
Internal Consistency Reliability;<br />
Cronbach’s = 0.80<br />
How often are you invited to<br />
participate in home visits/therapy<br />
with your child?<br />
How hard is it for you to<br />
check your child’s hearing<br />
aids/cochlear implant<br />
every day?<br />
How much do you feel you<br />
know how to help your<br />
child develop sounds?<br />
How comfortable are you with<br />
participating in home visits/therapy<br />
with your child?<br />
How hard is it for you to put<br />
on your child’s hearing<br />
aids/cochlear implant<br />
every day?<br />
How much do you feel you<br />
know about and are able to<br />
do speech-language<br />
activities/strategies with<br />
your child at home on a<br />
How much do you feel that you<br />
know about and are able to check<br />
and put on your child’s hearing<br />
aids/cochlear implant on a daily<br />
basis?<br />
How much do you feel you know<br />
about and are able to adjust the<br />
settings of your child’s hearing<br />
aids (volume) or cochlear implant<br />
(programs) on a daily basis?<br />
How often does the teacher or<br />
speech-language pathologist show<br />
you listening/language activities?<br />
How hard is it for you to<br />
check your child’s listening<br />
skills, using the Ling<br />
Six-Sound Test every day?<br />
How many days per week<br />
will your child wear<br />
his/her hearing aid or<br />
cochlear implant?<br />
How many hours per day<br />
will your child wear<br />
his/her hearing aid or<br />
cochlear implant?<br />
daily basis?<br />
How much do you feel you<br />
can positively affect your<br />
child’s speech<br />
development?<br />
How much do you feel you<br />
can positively affect your<br />
child’s language<br />
development?<br />
How much do you feel you<br />
can positively affect your<br />
child’s early development?<br />
How much do you feel you know<br />
about and are able to check your<br />
child’s listening skills daily, using<br />
the Ling Six-Sound Test?<br />
How much do you feel that you<br />
know how to help your child<br />
How much are you comfortable doing<br />
the listening and language activities<br />
with your child when the teacher or<br />
therapist is not there?<br />
How often do you feel that the teacher<br />
of the deaf includes you in the<br />
planning of your child’s IFSP or IEP?<br />
How comfortable are you in helping to<br />
develop your child’s IFSP or IEP?<br />
develop words?<br />
How much do you feel you can<br />
positively affect your child’s<br />
listening development?
The Volta Review, Volume <strong>106</strong>(3) (monograph), 299-319<br />
Management of Young<br />
Children with Unilateral<br />
Hearing Loss<br />
Sarah McKay, Au.D.<br />
Children with unilateral hearing loss (UHL) are at risk for academic, speech and<br />
language and social-emotional difficulties. To date, most of the evidence documented<br />
in the literature has been obtained from school-age children, most of whom were<br />
diagnosed with UHL after enrollment in school. Following the widespread institution<br />
of universal newborn hearing screening, most children are now screened prior to three<br />
months of age. Consequently, infants with UHL are being identified years before<br />
entering school, leaving hearing health and early intervention professionals asking<br />
how to best serve this population of children. Until evidence is obtained that will<br />
direct best practice initiatives, caregivers can take advantage of this previously nonexistent<br />
“window of opportunity” to provide optimal auditory environments for their<br />
children. It is the responsibility of audiology professionals and other professionals who<br />
provide services to children with hearing loss to be proactive and educate parents and<br />
caregivers so all children with UHL have the best chance for success.<br />
Introduction<br />
The risks associated with unilateral hearing loss (UHL) in children have<br />
been well documented in the literature. Specifically, children with UHL are at<br />
higher risk for educational, speech-language and social-emotional difficulties<br />
than their peers with normal hearing (Bess & Tharpe, 1984, 1986; English &<br />
Church, 1999; Oyler, Oyler, & Matkin, 1988). Before the advent of universal<br />
newborn hearing screening (UNHS), many children with UHL were not identified<br />
until school age (Brookhauser, Worthington, & Kelly, 1991). Most states<br />
have now implemented UNHS, and children with congenital UHL are being<br />
identified in the first weeks of life. Although this early identification of hearing<br />
loss is clearly an advantage, it leaves caregivers with questions. Roush<br />
(2000) stated that “for all families, it is imperative that they leave the diagnostic<br />
evaluation with the knowledge that much can and will be done to<br />
ameliorate the effects of hearing loss for their child” (p. 58).<br />
Sarah McKay, Au.D., is a senior audiologist at The Center for Childhood Communication at<br />
The Children’s Hospital of Philadelphia.<br />
Management of Young Children with Unilateral Hearing Loss 299
Parents want to know why their child has UHL, what the impact will be<br />
and what they can do to help their child. Early identification allows the<br />
audiologist to connect with the parents, share relevant information about<br />
UHL, listen to parents’ fears and build trust. Most of the evidence to date has<br />
been on older children. Professionals who diagnose and treat this population<br />
of newly identified babies are faced with new questions. How do we help<br />
young children avoid or minimize some of the deleterious effects of hearing<br />
loss? Does aggressive early intervention lower children’s risk of later educational<br />
difficulties? How do we know which children are going to experience<br />
difficulties? Can we justify changing early intervention policy based on evidence<br />
seen in the school-age population? We know that language outcomes<br />
of children with bilateral hearing loss are improved if intervention is initiated<br />
within the first year of life (Moeller, 2000; Yoshinaga-Itano, 1998). Should we<br />
expect this benefit in children with UHL? Although there is evidence of the<br />
benefit of early intervention for infants with hearing loss as well as evidence<br />
that supports the difficulties school-age children with UHL may encounter, is<br />
it enough to support changes in the way we manage infants and toddlers with<br />
UHL? Gravel et al. (2005) examined whether changes in policy and practice<br />
were warranted based on the evidence presented from previous studies. With<br />
regard to mild and unilateral hearing losses, they noted:<br />
While a body of work suggests that about half of elementary and middle<br />
school-age children with mild bilateral or unilateral hearing loss have some<br />
degree of academic or social-emotional difficulties, as yet there is little<br />
direct evidence in larger sample sizes using prospective research designs<br />
that mild forms of bilateral or unilateral hearing loss are related to developmental<br />
delays in the infant and preschool-age population. There are no<br />
studies concerning which individual infants and toddlers with mild forms<br />
of hearing loss are more likely to experience school-related problems at<br />
older ages and what the influence of other intrinsic and extrinsic variables<br />
is on these children’s developmental outcome.” (p. 219)<br />
The topic of UHL is not new to the audiology profession. With regard to the<br />
profession’s response to UHL, Oyler et al. (1988) stated:<br />
Historically, the involvement of hearing health professionals in the management<br />
of children with unilateral hearing loss has been limited. The<br />
conventional approach was to identify the cause of the hearing loss and to<br />
assure the parents that there would be no handicap.” (p. 18)<br />
In 2005, the Centers for Disease Control and Prevention (CDC) and the<br />
Marion Downs Hearing Center cosponsored “The National Workshop on<br />
Mild and Unilateral Hearing Loss.” More than 50 professionals with expertise<br />
300 McKay
in mild and/or unilateral hearing loss convened to review and discuss current<br />
information related to the identification and appropriate intervention for<br />
children with mild and unilateral hearing losses. Areas covered were prevalence<br />
and screening; diagnosis, amplification and outcomes; and early intervention,<br />
eligibility and clinical practice. The information generated in this<br />
workshop was comprehensive and illuminated the need for future research<br />
with this population of children. This need was particularly evident when<br />
considering infants and preschool children with UHL. When children with<br />
UHL remain unidentified until they are school age, or until problems arise,<br />
intervention is often failure based. Although identifying children with UHL<br />
at birth presents some unanswered questions, it also allows professionals<br />
who care for them to be proactive in their care. Evidence gathered in the<br />
school-age population may help to guide future research endeavors in the<br />
birth-to-3 population and help to support decisions about best practices.<br />
Status of Early Hearing Detection and Intervention Programs<br />
Currently, 40 jurisdictions (38 states, the District of Columbia and Puerto<br />
Rico) have legislation in effect for early hearing detection and intervention<br />
(EHDI) programs (National Center for Hearing Assessment and Management,<br />
2006). The specific guidelines vary from state to state. Some states<br />
require that all babies be screened, whereas others require only babies born at<br />
specified hospitals and still others, a specified percentage of babies born. For<br />
a variety of reasons, it may not be feasible to screen all babies before discharge:<br />
Not all babies are born in hospitals, some babies are discharged early,<br />
prior to before screening, or parents deny newborn hearing screening. An<br />
estimated 90% of infants born in the United States, however, are being<br />
screened for hearing loss (Directors of Speech and Hearing Programs in State<br />
Health and Welfare Agencies, 2003).<br />
Eligibility criteria for early intervention services through the Individuals<br />
with Disabilities Education Improvement Act of 2004 (IDEA 2004) Part C and Part<br />
B also vary from state to state. Although Part C allows eligibility for early<br />
intervention services if a child has a condition that places him or her at risk<br />
for developmental delay, specifics regarding hearing loss vary. Some state<br />
Part C and Part B programs define eligibility for services based on percentage<br />
of delay. For instance, in Alaska, established risk conditions are those that<br />
“have a high probability of resulting in a 50% developmental delay.” In<br />
Connecticut, children with UHL are not automatically eligible for services.<br />
Eligibility in Florida specifies sensorineural hearing loss in excess of 50 dB HL<br />
in the worst ear. (A state-specific guide to services is available at www<br />
.infanthearing.org.) Some babies are eligible to receive services immediately,<br />
whereas others are entitled to an evaluation and periodic monitoring. Once a<br />
child is three years old and eligibility is based on the criteria stated in IDEA<br />
Part B, services most often are based on existing delay.<br />
Management of Young Children with Unilateral Hearing Loss 301
Incidence of UHL<br />
Impact of UHL<br />
Definitions of UHL have varied over the years, but generally, a UHL is a<br />
loss in one ear of any degree (mild to profound) (American Speech-Language-<br />
Hearing Association, 2006). The incidence of UHL is approximately 0.83/<br />
1,000 (Prieve et al., 2000). If the incidence is divided into categories of babies<br />
who were in the neonatal intensive care unit and well-baby nursery, the<br />
incidence is 3.2/1,000 and 0.41/1,000, respectively. It should be noted that<br />
these numbers might not accurately reflect the number of children with mild<br />
UHL because current UNHS technologies are not sensitive to mild degrees of<br />
hearing loss. Johnson et al. (2005) found that 80% of infants with later confirmed<br />
bilateral mild hearing loss or UHL were not referred (using a passrefer<br />
criterion) when a two-step, two-technology hearing screening protocol<br />
(Otoacoustic Emissions [OAE] and automated Auditory Brainstem Response<br />
[ABR] testing) was used.<br />
Prevalence of UHL<br />
The prevalence of UHL in the school-age population is approximately 3%<br />
to5% according to Bess, Dodd-Murphy and Parker (1998) and 5.6% according<br />
to Niskar et al. (1998). These figures are alarming, particularly compared to<br />
incidence rates of UHL in the neonatal population (0.83/1,000). Although<br />
some children in the older age group have late-onset or acquired hearing loss,<br />
it is speculated that others may have had existing mild hearing loss at birth<br />
that was fluctuating or progressive in nature. This information is pertinent<br />
because children with speech and language delays may be enrolled in early<br />
intervention programs, and their early intervention providers may be the first<br />
to detect signs of hearing difficulty.<br />
Psychoacoustic Impact<br />
The difficulties that children with UHL experience have explanations<br />
rooted in psychoacoustics. Binaural advantages include localization, binaural<br />
summation, reduction in the head shadow effect and binaural release from<br />
masking. Localization difficulties on the horizontal plane have been documented<br />
(Bess & Tharpe, 1986; Morrongiello, 1989). Localization is affected<br />
because individuals with UHL do not have the benefit of interaural time and<br />
intensity cues. Typically, when sound approaches from one direction, the<br />
interaural time difference between ears allows one to determine from which<br />
direction the sound is coming. With UHL, one may not be able to hear those<br />
time differences (depending on the degree of UHL) and, thus, can have difficulty<br />
localizing.<br />
302 McKay
Children with UHL experience difficulties understanding in noise, in<br />
large part, because they do not have the benefit of binaural release from<br />
masking. Normal hearing in both ears allows one to filter out noise to better<br />
hear the speech signal. Individuals with UHL do not have this advantage. As<br />
Bess and Tharpe (1986) demonstrated, children with UHL exhibit greater<br />
difficulty understanding nonsense syllables in noise than children with normal<br />
hearing.<br />
Binaural summation is the increased perception of loudness when sound is<br />
heard by two normal hearing ears rather than by just one. For a speech signal<br />
the advantage is approximately 3 to 8 dB (Lieu, 2004). Children with UHL do<br />
not have the advantage of binaural summation. This disadvantage may contribute<br />
to their difficulty with understanding speech from a distance.<br />
The difficulties resulting from a lack of binaural advantage are magnified<br />
in children. They do not yet have the language base to fill in the gaps when<br />
speech enters from the impaired side, is present in noise or comes from a<br />
distance. Therefore, children with UHL may benefit from accommodations to<br />
counteract or preempt these psychoacoustic limitations. Such accommodations<br />
can be made at home and in a child’s preschool. These may be in the<br />
form of acoustic modifications, placement strategies and amplification or FM<br />
systems.<br />
Studies summarized by Emmer (1999) revealed that auditory deprivation<br />
was documented in children with binaural hearing loss who were fit monaurally,<br />
in adults with sensorineural UHL and in the unaided, poorer ear of<br />
those adults with asymmetrical sensorineural hearing loss. Emmer noted that<br />
auditory deprivation is more marked and has earlier onset in individuals<br />
with UHL than in those with bilateral hearing loss who were fit monoaurally.<br />
Additional evidence cited in this review indicated that auditory deprivation<br />
“involves alteration in the central nervous system during a critical period of<br />
development” (p. 26). Emmer provided an illustrative case of a 4-year-old<br />
child with bilateral hearing loss. She had relatively equal speech perception<br />
abilities in each ear but chose to wear only one hearing aid. By age 8, the<br />
child’s speech recognition abilities had declined in the unaided ear. It should<br />
be noted that the phenomenon of acclimatization (improvement following<br />
auditory deprivation) also has been observed following later introduction of<br />
amplification to the unaided ear. With regard to UHL, questions remain<br />
about whether providing stimulation to the affected ear through amplification<br />
would avoid auditory deprivation and overcome these psychoacoustic<br />
challenges.<br />
Educational Impact<br />
The difficulties children with UHL experience were first described in detail<br />
in the 1980s. As previously mentioned, this population of children typically<br />
was not identified until they were school age (Brookhauser et al., 1991).<br />
Management of Young Children with Unilateral Hearing Loss 303
Children with UHL are at risk for academic delays, and grade failure has been<br />
noted (Bess & Tharpe, 1986; Oyler et al., 1988). In the Bess and Tharpe (1986)<br />
study, 35% of children with UHL were found to have failed a grade. This<br />
finding was 10 times higher than the greater Nashville county average of 3.5%<br />
for grades K to 6. Oyler et al. (1988) found that 24% of children with UHL had<br />
failed a grade in school, again approximately 10 times greater than the county<br />
average (2% for grades K to 8). These findings were stunning. In addition,<br />
Bess and Tharpe found that 13.3% of children with UHL were in need of<br />
resource assistance. Oyler et al. reported 40.7% of these children were receiving<br />
special services. More recently, English and Church (1999) noted that<br />
grade failure was no longer a preferred practice; therefore, grade failure could<br />
not be compared with the 1980s studies. English and Church did find that a<br />
large percentage (54%) of children with UHL received individualized special<br />
education services. The nature of the services varied, with most (27%) in the<br />
area of fitting and monitoring of amplification; 16% in resource room support<br />
for reading and math; 6% in speech-language and listening therapy; and 5%<br />
in either physical therapy, occupational therapy, vision therapy or counseling.<br />
At the CDC “National Workshop on Mild and Unilateral Hearing Loss,”<br />
Neault (2005) provided an excellent summary of the results of five studies on<br />
a total of 190 children with UHL. Comparing bilateral to unilateral listeners<br />
across a variety of tasks, the average scores of “bilateral listeners” performed<br />
at the 50th percentile, whereas “unilateral listeners” were poorer in all areas<br />
(math, 30th percentile; language arts, 25th percentile; social skills, 32nd percentile).<br />
Children with severe to profound UHL also have been found to have<br />
a lower full-scale IQ score on the Wechsler Intelligence Scale for Children-<br />
Revised (WISC-R) than children with lesser degrees of UHL (Culbertson &<br />
Gilbert, 1986; Klee & Davis-Dansky, 1986).<br />
Speech and Language Impact<br />
Some studies have indicated that children with UHL are at risk for speech<br />
and language delays. Kiese-Himmel (2002) evaluated the emergence of oneand<br />
two-word phrases in children with UHL. She found that the average age<br />
for first words was within normal limits (12.7 months). However, the average<br />
age for first two-word utterances was found to be delayed (23.5 months). The<br />
defined norm for the emergence of two-word phrases in this study was 18<br />
months. Lieu (2004) reported on the findings of the Colorado Home Intervention<br />
Program (CHIP) that followed the language abilities of 15 children<br />
with UHL since infancy. Of the 15 children, four (27%) were found to have<br />
significant language delays, and one (7%) was found to have borderline language<br />
delays.<br />
Social-Emotional Impact<br />
Because of the psychoacoustic variables mentioned earlier, sound often is<br />
audible but not always understandable to children with UHL. This disadvantage<br />
304 McKay
can leave a child appearing inattentive, disinterested or aloof. These negative<br />
perceptions can affect school and peer interactions. When a child is not able<br />
to hear conversations in groups, he or she may feel insecure or “left out,”<br />
which can lead to difficulties with behavior and peer relationships. Bess et al.<br />
(1998) studied groups of third, sixth and ninth graders with minimal hearing<br />
loss (including UHL) and found that these children had greater dysfunction<br />
than their peers with normal hearing on domains of stress, self-esteem and<br />
behavior.<br />
Teacher Perceptions of Children With UHL<br />
Minimal hearing loss (a term that includes UHL) has been described as an<br />
“invisible acoustic filter” (Flexer, 1995). Children with UHL may not exhibit<br />
obvious difficulties. If teachers are not informed that a child has UHL, they<br />
may never know that the hearing loss exists. Hearing aids, which alert teachers<br />
to children with bilateral hearing loss, are not always recommended or<br />
chosen for children with UHL, and as mentioned previously children with<br />
UHL are at risk for academic delays (Bess & Tharpe, 1984; Brookhauser et al.,<br />
1991; English & Church, 1999; Oyler et al., 1988). Teacher perceptions about<br />
children with UHL have been studied. Dancer, Burl and Waters (1995) obtained<br />
Screening Instrument for Targeting Educational Risk (SIFTER) questionnaires<br />
from teachers of children with UHL. They found that teachers gave<br />
lower scores to children with UHL in all five areas of the SIFTER: academics,<br />
attention, communication, participation and behavior. Culbertson and Gilbert<br />
(1986) reported that teachers rated 39% of children with UHL as “below<br />
average” compared to 5% for their peers with normal hearing. Children with<br />
UHL were described as giving up easily on new and difficult tasks and<br />
needing more direction for task completion. They also received more negative<br />
ratings than their peers with normal hearing in the areas of dependence and<br />
independence, attention to task, emotional ability, peer relations and social<br />
confidence. Teachers and care providers of children with UHL should be<br />
informed of the child’s hearing loss, or they may draw other (negative) conclusions<br />
about the child based on his or her performance, attentiveness and<br />
behavior. Bess & Tharpe (1986) illuminated the need for teachers to receive<br />
training regarding children with UHL and the everyday problems they may<br />
encounter. They also warned that teachers need to be informed about issues<br />
regarding localization, listening in noise and safety issues. Although this<br />
warning was intended for teachers of school-age children, it would be just as<br />
applicable to daycare and preschool teachers. Any knowledge that helps a<br />
teacher understand the unique challenges of his or her students should be<br />
beneficial.<br />
Recommendations<br />
To the author’s knowledge, best practice guidelines have not yet been<br />
identified for infants and toddlers with UHL, which leaves those who work<br />
Management of Young Children with Unilateral Hearing Loss 305
with this population of children to make recommendations and choose options<br />
based on evidence from an older population. This section delineates<br />
some of these options and possible ways to apply them to a younger population.<br />
Amplification Options<br />
Some studies have reported on the efficacy of amplification with UHL, but<br />
most have been with school-age children. Little is known about the benefit of<br />
early amplification for infants and toddlers with UHL. The Special Consideration<br />
section of the American Academy of Audiology (AAA, 2003) Pediatric<br />
Amplification Protocol addresses the fitting of amplification on children with<br />
UHL as follows:<br />
Use of hearing aid amplification is indicated for some children with unilateral<br />
hearing losses. The decision to fit a child with unilateral hearing loss<br />
should be made on an individual basis, taking into consideration the child’s<br />
or family’s preference as well as audiologic, developmental, communication,<br />
and educational factors. (p. 3)<br />
The choice of when to fit a child with amplification may depend on different<br />
factors. Evidence on the efficacy of fitting babies with UHL with hearing<br />
aids does not yet exist; thus, parents and audiologists find themselves<br />
examining other factors. The timing of initial fitting with a hearing aid may<br />
have social ramifications. If parents choose to wait to fit their child with a<br />
hearing aid until the child experiences failure (i.e., later elementary grades),<br />
the attitudes of the child’s peers toward the amplification at that time may be<br />
poorer than they would have been at a younger age (Dengerink & Porter,<br />
1984; Riensche, Peterson, & Linden, 1990). These studies show that older<br />
children perceive their peers who wear hearing aids to be less smart and less<br />
attractive. Younger (preschool) children have no negative attitudes toward<br />
their peers who wear hearing aids. It is possible, therefore, that earlier versus<br />
later amplification may allow a child to develop positive self-esteem and<br />
friendship/peer groups in which a hearing aid goes unnoticed.<br />
The use of conventional hearing aids with children who have moderately<br />
severe or better hearing in the impaired ear has met with some success, as<br />
subjective rating scales indicate (Kiese-Himmel, 2002; McKay, 2002). A questionnaire<br />
administered to parents of children with UHL who wore hearing<br />
aids and asked parents to rate how their child was doing at present versus<br />
before amplification (McKay, 2002). The results were very positive, with 72%<br />
of parents and patients reporting benefit (improved or greatly improved) on<br />
questions involving different listening environments. Additionally, all of the<br />
parents reported being happy with their decision to fit their child with a<br />
hearing aid. Fifty percent wished they had fit their child with a hearing aid<br />
306 McKay
sooner. Most of the children in this questionnaire group were school age. For<br />
the children who were under three, ratings were more neutral. These younger<br />
children had not yet encountered some of the listening difficulties that older<br />
children experience, which may account for the neutral ratings. Kiese-<br />
Himmel (2002) reported 81% acceptance from children with moderately severe<br />
or better UHL who wore a hearing aid but “very poor use of hearing aid<br />
or no use of hearing aid” (p. 59) when the hearing loss was severe or profound.<br />
With a lesser degree of hearing loss, it may be possible to achieve a<br />
more balanced sense of hearing between the ears. All available audiologic<br />
information, including electrophysiological and behavioral test results, in<br />
conjunction with verification measures, such as real ear probe measures with<br />
desired sensation level (DSL) targets, always should be used to ensure appropriate<br />
fitting.<br />
As parents seek sources to inform themselves about options for their newly<br />
diagnosed baby with UHL, it is important to give them information about all<br />
possible devices, including those that would not be recommended or are not<br />
an option at that time. Examples are contralateral routing of signal (CROS)<br />
amplification, bone-anchored hearing apparatus (BAHA) and even a cochlear<br />
implant. Although most hearing professionals know that a child is a candidate<br />
for a cochlear implant only if he or she has bilateral severe-to-profound<br />
hearing loss, parents and well-intending relatives and friends do not. It is a<br />
simple strategy to inform parents about all available technologies to avoid<br />
confusion or disappointment.<br />
The AAA (2003) Pediatric Amplification Protocol also addresses the use of<br />
CROS amplification. The CROS system has been purported to be useful in<br />
quiet situations, especially in cases where the signal originates on the side of<br />
the impaired ear. The protocol cautions audiologists that CROS amplification<br />
may not be beneficial in the classroom because of the introduction of noise to<br />
the normal hearing ear through the microphone on the impaired side (Kenworthy,<br />
Klee, & Tharpe, 1990). The CROS system, therefore, should not be<br />
considered for young children.<br />
The BAHA was originally intended for individuals with conductive or<br />
mixed hearing loss but has recently been marketed for individuals with UHL.<br />
Because of issues related to anatomical maturation, the BAHA is only Federal<br />
Drug Administration approved for use in children over 5. The premise of<br />
fitting a BAHA on a person with severe or profound sensorineural hearing<br />
loss is to allow transcranial delivery of a signal. Although there are reports of<br />
BAHA fittings on adults with UHL (Wazen, Ghossani, Kacker, & Zschommler,<br />
2001; Wazen, Ghossani, Spitzer, & Kuller, 2005; Wazen et al., 2003), to<br />
the author’s knowledge, there are no reports to date on children with severe<br />
or profound sensorineural hearing loss in one ear. It could be speculated that<br />
the introduction of noise to the impaired side, which is sent transcranially to<br />
the normal side, would have a similar impact on a child to that of a CROS aid.<br />
A great deal more evidence regarding outcomes for adults and older children<br />
Management of Young Children with Unilateral Hearing Loss 307
who have UHL and the BAHA implant should be obtained to determine if<br />
surgical implantation of BAHA in children with UHL is beneficial.<br />
The benefit of FM technology in this population has been well documented<br />
(Flexer, 1995; Kenworthy et al., 1990; Updike, 1994). Increasing the signal-tonoise<br />
ratio for a child who is developing language is clearly an advantage. As<br />
with the aforementioned studies, most evidence has been conducted among<br />
school-age children. In the infant and toddler population, one must think<br />
creatively about which listening situations FM use could be beneficial. These<br />
situations might include while a child is in a stroller or car seat or during<br />
instructional time in a day care or preschool environment. Another factor to<br />
consider is the best choice for routing the FM signal. If a child already has a<br />
hearing aid, the audiologist may choose to couple an FM receiver to it. Another<br />
option is to couple the FM receiver to the normal hearing ear through<br />
an ear-level FM system. Personal and sound field FM systems also may be an<br />
option. To the author’s knowledge, no evidence is available to indicate the<br />
most appropriate choice of FM for a preschool-age child with UHL. In keeping<br />
with the AAA (2003) Pediatric Amplification Protocol, decisions must be<br />
made on an individual basis. As a child approaches school age, or if he or she<br />
is already receiving early intervention services, it is recommended that the<br />
decision be coordinated with the child’s educational audiologist or hearing<br />
support teacher. They may have additional important information about the<br />
class setting, and use of FM with other students will need to be considered.<br />
This information is not typically available to the clinical audiologist.<br />
Medical Considerations<br />
Upon diagnosis of UHL, parents should be informed of additional recommended<br />
evaluations. Understanding the rationale behind these recommendations<br />
as well as the potential results and implications is important for all<br />
care providers, even those not directly involved in the evaluations, because<br />
parents may have immediate questions. Recommendations may need to be<br />
made over a series of appointments to avoid crossing the fine line between<br />
empowering and overwhelming parents. The child’s primary care physician<br />
(PCP), who should act as “gate keeper” for all subsequent medical referrals,<br />
should be informed immediately of the diagnosis and recommendations. The<br />
Joint Committee on Infant Hearing (JCIH, 2000) Year 2000 Position Statement:<br />
Principles and Guidelines for Early Hearing Detection and Intervention Programs<br />
described the importance of the medical home model, which allows pediatricians<br />
and PCPs to be the center of all care for the child:<br />
Pediatricians and other primary care physicians, working in partnership<br />
with parents and other health-care professionals, make up the infant’s<br />
“medical home.” A medical home is defined as an approach to providing<br />
308 McKay
health care services where care is accessible, family-centered, continuous,<br />
comprehensive, coordinated, compassionate, and culturally competent.<br />
Pediatricians act in partnership with parents in a medical home to identify<br />
and access services needed in developing a global plan of appropriate and<br />
necessary health and habilitative care for infants identified with hearing<br />
loss. (p. 801)<br />
The JCIH position statement also made the following statement about the role<br />
of the PCP:<br />
The infant’s pediatrician or other primary care physician is responsible for<br />
monitoring the general health and well-being of the infant. In addition, the<br />
primary care physician in partnership with the family and other health care<br />
professionals, assures that audiologic assessment is conducted on infants<br />
who do not pass screening and initiates referrals for medical specialty<br />
evaluations. (p. 804)<br />
The position statement made specific recommendations for medical referrals<br />
following the diagnosis of sensorineural hearing loss that include evaluations<br />
by otolaryngology; genetics; ophthalmology; developmental pediatrics; neurology;<br />
and, as needed, nephrology and cardiology. These recommendations<br />
are posted on many Web sites of otolaryngology departments in major medical<br />
centers across the country. These evaluations are further described here.<br />
Otologist/Otolaryngologist<br />
Children with UHL should be referred to an otolaryngologist to rule out<br />
outer or middle ear pathology, look at inner ear structures and screen for<br />
other associated conditions. The otolaryngologist may recommend the following<br />
tests:<br />
CT scan of the temporal bone to check for evidence of middle ear and<br />
inner ear anomalies. Findings from this scan may give information about<br />
whether the hearing loss may progress in one ear or both.<br />
Magnetic resonance imaging (MRI) to check for inner ear malformations<br />
and status of the auditory nerve and pathways.<br />
Urinalysis to screen for associated kidney abnormalities.<br />
Echocardiogram (ECG) to rule out prolonged QT (the interval between<br />
two points [Q and T] on the common electrocardiogram) associated with<br />
Jervell and Lange Neilsen syndrome. An ECG sometimes is ordered for<br />
children with UHL but often is conducted for bilateral sensorineural<br />
hearing loss.<br />
Blood work if thyroid dysfunction, autoimmune disease or a specific<br />
infection is suspected.<br />
Management of Young Children with Unilateral Hearing Loss 309
Progression of hearing loss is a concern in children with UHL and warrants<br />
comprehensive baseline medical and audiologic testing and close audiologic<br />
monitoring. Hearing loss not only can progress in the impaired ear, but also<br />
can become bilateral. The CHIP currently collects information about the development<br />
of children with UHL. This group reported that close to 10% of<br />
participants had UHL that progressed to bilateral hearing loss (CHIP, 2005).<br />
In a review of the existing literature on children with UHL, Lieu (2004) noted<br />
a study reporting that that five out of 35 children with UHL were found to<br />
have progressive losses, and 11 had inner ear anomalies (Bamiou, Savy,<br />
O’Mahoney, Phelps, & Sirimanna, 1999). When examining characteristics of<br />
sensorineural hearing loss in children with inner ear anomalies, Coticchia,<br />
Gokhale, Waltonen and Sumer (2006) found that children with inner ear<br />
anomalies were most likely to have UHL. Another population of children at<br />
risk for progressive hearing loss are those with cytomegalovirus. Alerting<br />
physicians about the possible causes and incidence of progressive hearing<br />
loss will help them become aware of the importance of close audiologic<br />
monitoring and convey the importance of listening to parents if they express<br />
concern that their child’s hearing has changed. It is important for educational<br />
and therapeutic care providers of a child with UHL, who may be the first to<br />
detect subtle changes in a child’s auditory or speech abilities, to be informed<br />
of this risk as well.<br />
Alerting caregivers of children with UHL that outer and middle ear conditions<br />
may cause additional temporary hearing loss also is important. The<br />
JCIH (2000) made the following statement with regard to medical management<br />
of middle ear pathology:<br />
The impact of OME (otitis media with effusion) is greater for infants with<br />
sensorineural hearing loss than those with normal cochlear function. Sensory<br />
or permanent conductive hearing loss is compounded by additional<br />
conductive hearing loss associated with OME. OME further reduces access<br />
to auditory/oral language stimulation and spoken language development<br />
for infants whose families choose an auditory-oral approach to communication<br />
development. Prompt referral to otolaryngologists for treatment of<br />
persistent or recurrent OME is indicated in infants with sensorineural hearing<br />
loss. (p. 807)<br />
Most young children experience OME during their early childhood. An<br />
established relationship with an otolaryngologist will be helpful in vigilant<br />
management of OME in children with UHL.<br />
Genetics<br />
Children with sensorineural hearing loss should be referred to a geneticist<br />
to determine possible etiology or association with a syndrome. A comprehensive<br />
genetics evaluation will likely include:<br />
310 McKay
Dysmorphology examination<br />
Complete family and medical history<br />
Audiologic testing of parents and siblings<br />
Gene testing if syndrome is suspected<br />
Ophthalmology<br />
Every child with permanent hearing loss is referred to ophthalmology to<br />
ensure optimal visual acuity. Most known disorders that have both visual<br />
and hearing problems, such as Usher’s syndrome, are usually present only in<br />
children with bilateral hearing loss.<br />
Neurology<br />
A neurological examination is recommended only if hearing loss is considered<br />
to originate past the point of the outer hair cells of the cochlea (i.e.,<br />
auditory neuropathy, neural hearing loss or central disorder). Findings of<br />
abnormal ABR results in conjunction with present OAE would lead to this<br />
recommendation.<br />
Nephrology<br />
This referral is made only when kidney function is in question.<br />
Speech-Language Pathology<br />
Any child with UHL should be referred for an initial evaluation with a<br />
speech-language pathologist. Subsequent evaluations to monitor development<br />
also are recommended.<br />
Parental Education and Advocacy<br />
Upon receiving the news that their child has a UHL, parents will have<br />
immediate questions and concerns. Roush and Harrison (2002) found that<br />
after a child has been diagnosed with hearing loss, parents wanted to know<br />
about (1) the cause of the hearing loss, (2) how to cope with the emotional<br />
aspects of the hearing loss, (3) how to understand the audiogram, (4) how<br />
their child will learn to listen and speak and (5) the ear and hearing. These<br />
prioritized concerns were those of parents of children with newly identified<br />
bilateral hearing loss. Although the answers may not be the same for a child<br />
with newly diagnosed UHL, it is important to be aware of parents’ concerns.<br />
Providing information to parents at this point may alleviate some of their<br />
fears. Knowing that they will be able to advocate for their child by having the<br />
information they need can be empowering. Even if a child is not eligible for<br />
Management of Young Children with Unilateral Hearing Loss 311
ongoing services because of a specific state’s Part C eligibility restrictions, an<br />
initial evaluation and scheduled monitoring allows an opportunity for these<br />
parents to be informed. Ideally, parents should receive written information<br />
after the evaluations for their reference. This information should include<br />
ways to help their child at home and in his or her day care or preschool<br />
environment. Calderon (2000) looked at the outcomes of children with hearing<br />
loss and parent involvement and found that parental communication<br />
skills had an impact on the outcomes. Parents should be given information on<br />
normal development of speech and language milestones. Additionally, they<br />
may benefit from information on how to be a good language model for their<br />
child and stimulate language as well as the importance of monitoring language.<br />
The following are examples of information to share with parents:<br />
When you are holding or feeding your baby, try to make sure your<br />
child’s normal hearing ear is facing you.<br />
Always be aware of where your child’s normal hearing ear is facing. It<br />
should always be facing you or those talking to your child. Think about<br />
this when your child is at dinner, in the car or in her stroller, for example.<br />
Try to avoid letting your child’s normal hearing ear face a noise source,<br />
such as a dishwasher.<br />
Try to make eye contact and use facial expressions.<br />
Get your child’s attention before talking to him or her.<br />
Talk about what you are doing within your daily routine.<br />
Start conversations and take turns talking.<br />
Help your child localize sound by using visual cues.<br />
Use repetition.<br />
Look for cues that your child understands what you are saying.<br />
Expand your child’s vocabulary by using other adjectives and adverbs.<br />
Play listening games (auditory version of “I Spy”).<br />
Raise your voice slightly and face him or her when you are at a greater<br />
distance (walking your baby in the stroller).<br />
Parents should be aware of the listening situations in which their child may<br />
experience the most difficulty. These situations include listening in environments<br />
that are noisy or when there is distance between the parent and the<br />
child. Parents should know that if they call their child and give him or her<br />
instructions from another room, the child might hear them but not understand<br />
what was said.<br />
Parents should be guided on how to best advocate for their child with<br />
regard to early intervention and education if their child experiences difficulties.<br />
For example, in the state of Pennsylvania, information is compiled in a<br />
booklet by the Parent Education Network (2003) that outlines much of the<br />
information parents will need to know as they navigate the early intervention<br />
312 McKay
and educational systems. Topics covered include an overview of special education<br />
laws, explanation of the evaluation process, Individualized Family<br />
Service Plans and Individualized Education Programs (what to ask for), what<br />
to look for in an early intervention program, classroom strategies and appendices<br />
with useful definitions and checklists for parents.<br />
Education of Day Care and Preschool Providers<br />
The phrase “preferential seating” is familiar to all who work with children<br />
with hearing loss and is consistently recommended for children with UHL.<br />
Although preferential seating may be helpful, the recommendation is not<br />
always straightforward and may give caregivers the impression that it is the<br />
solution. We must think beyond preferential seating and the typical classroom.<br />
Parents should be informed about how to carefully choose day care<br />
providers and preschools and how to advocate for their child’s needs once the<br />
child is enrolled in a facility. Ideally, written information should be given to<br />
a care provider (day care or preschool teacher), and a hearing care specialist<br />
should meet with this person to explain how to best meet the needs of the<br />
child in his or her environment. Information about the difficulties older children<br />
with UHL may experience should be shared with teachers of younger<br />
children to alert them to potential problems. Examples of difficulties seen in<br />
some older children with UHL are fatigue, inattentiveness, frustration and<br />
behavior and social problems. Teachers can be given strategies to help the<br />
child in the day care or preschool environment, such as the following:<br />
Teach the children (and staff) in the class good “listening etiquette.”<br />
When one person is talking, everyone listens. Although this is not practical<br />
during play or free time, it should be exercised during structured<br />
lessons.<br />
Try to get the child’s attention by calling his or her name before giving<br />
instructions.<br />
Use a visual cue, such as pointing to the child who is to speak next. This<br />
will direct the child toward the direction in which to turn.<br />
Try to face the child when speaking.<br />
Be aware of the child’s placement in the class. Do not place him or her<br />
near a noise source, such as an air conditioner. Proximity is important;<br />
therefore, place the child near you and with his or her normal hearing ear<br />
facing you.<br />
Have a nonverbal cue that can be used to regain attention (i.e., tap on the<br />
shoulder followed by eye contact) if the child seems inattentive.<br />
Try to place noisy centers off on their own.<br />
Take interest in the child’s hearing aid or FM system (if applicable). Let<br />
the child share it at “show and tell.” Acquire and read children’s books<br />
that explain hearing loss and hearing aids.<br />
Management of Young Children with Unilateral Hearing Loss 313
Environmental and Acoustic Modifications<br />
Educating parents regarding the importance of good acoustic environments<br />
for their child will aid them in choosing appropriate day care or preschools.<br />
Crandell and Smaldino (2001) addressed the importance of acoustic<br />
friendly classrooms. Although most applications these authors noted were<br />
made to a typical grade school class, they can be implemented in day care and<br />
preschool classes as well. Some recommendations are as follows:<br />
Avoid day care programs and preschools that practice “open class”<br />
teaching with many classes within a large area. The child with UHL<br />
needs the least amount of competing noise.<br />
Request area rugs if there is not wall-to-wall carpeting.<br />
Use window treatments (thick materials).<br />
Avoid using hard surfaces whenever possible. Use an alternative such as<br />
a corkboard.<br />
Use tennis balls or rubber tips on the bottoms of chairs.<br />
In play or leisure areas, place soft seating such as bean bag chairs.<br />
Use creative artwork such as decorated egg crates, material or rug strips<br />
and Styrofoam balls hung from the ceiling.<br />
Place movable boards at an angle in the room.<br />
Turn off noisy equipment (i.e., computers, tape recorders) when not in<br />
use.<br />
Try to keep doors and windows closed.<br />
Audiologic Monitoring<br />
The importance of close monitoring must be stressed to all involved in the<br />
care of a child with UHL. Audiologic monitoring is needed to ensure that<br />
hearing sensitivity remains stable in both ears. It is particularly important in<br />
light of the high incidence of progressive hearing loss in this population.<br />
Speech and language monitoring may help to pick up subtle difficulties that<br />
a child may have and allow for remediation before a child is school age.<br />
Parents and teachers may find functional auditory measures helpful in tracking<br />
the ongoing auditory abilities of a child with UHL. Oticon, Inc., published<br />
a brochure that recommends specific measures based on age and degree of<br />
hearing loss (Tharpe & Flynn, 2005). Specific measures to be completed by<br />
parents and teachers for the birth-to-3 age group and the 3-to-5 age group are<br />
recommended. Close monitoring allows professionals to interact with parents,<br />
answer questions and raise awareness. Such opportunities only can be<br />
beneficial.<br />
Conclusion<br />
School-age children with UHL are known to be at risk for academic and<br />
speech-language delays. With the widespread implementation of UNHS,<br />
314 McKay
many children with congenital UHL are now being identified in their first<br />
months of life. Recently this population of children has drawn interest and<br />
focus from groups such as the CDC, the AAA, and ASHA. Information<br />
should continue to evolve with regard to best practices for young children<br />
with UHL. Future evidence will shape consistent policy in the best interest of<br />
these children. At The National Workshop for Mild and Unilateral Hearing<br />
Loss (2005), participants in working groups outlined future research needs, a<br />
brief sampling of which is as follows:<br />
Increase public and professional awareness of UHL.<br />
Develop recommendations on how to best inform parents about the<br />
potential outcomes of children with UHL.<br />
Collect outcome data on amplification for UHL (early versus late, FM<br />
versus hearing aid).<br />
Compare the effects of early FM system use, hearing aid use and no<br />
amplification on communication, educational and social-emotional outcomes<br />
in children with UHL.<br />
Develop more sensitive and age-appropriate outcome measures and<br />
functional assessments for the birth-to-3 age group.<br />
Conduct descriptive studies of successful early intervention systems;<br />
successful state systems can serve as useful models.<br />
Share research findings with state Part C coordinators for use in updating<br />
their eligibility criteria.<br />
Conduct randomized trials to compare outcomes for children who receive<br />
early intervention with those who do not.<br />
Investigate long-term outcomes to determine whether children from<br />
birth-to-3 who experience delays are the same children experiencing<br />
delays in school.<br />
Identify factors that predict successful speech, language and behavior<br />
outcomes.<br />
A complete list of future needs as well as the proceedings of this workshop<br />
can be found at www.cdc.gov/ncbddd/ehdi. Although questions remain<br />
about the best practice for infants and toddlers with UHL, early identification<br />
gives hearing health and early intervention professionals a unique “window<br />
of opportunity” not previously available. As EDHI programs’ current and<br />
future research begin to gather the evidence needed to establish consensus<br />
and mandates, those who care for children with UHL will be able to use this<br />
evidence to develop and implement practices and recommendations that will<br />
optimally benefit these children. As questions are answered over the coming<br />
years, it will be critical to reinforce the need to share the results with the Part<br />
C coordinators in order to effect changes in eligibility criteria. Although it is<br />
important to acknowledge there are little data regarding outcomes for very<br />
young children with UHL, there are strategies that may mitigate potential<br />
Management of Young Children with Unilateral Hearing Loss 315
negative effects of unilateral hearing. We do have recommendations for parents<br />
on how to help their child now. We know that early intervention is<br />
beneficial to children with hearing loss, and we know that parental involvement<br />
positively influences outcomes. By continuing to educate parents and<br />
those who work with or care for a child with UHL, we will enable these<br />
individuals to better help the child, advocate for the child and teach the child<br />
how to advocate for him- or herself. Considering the potential deleterious<br />
effects of UHL, professionals must be responsible for proactively educating<br />
parents and caregivers so that all children with UHL have the best chance for<br />
success.<br />
Acknowledgments<br />
The author wishes to thank Judith Gravel, Ph.D., Carol Knightly, Au.D.,<br />
and Anne Marie Tharpe, Ph.D., for their ongoing support and guidance in her<br />
interest in unilateral hearing loss in children.<br />
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Management of Young Children with Unilateral Hearing Loss 319
The Volta Review, Volume <strong>106</strong>(3) (monograph), 321-341<br />
Early Spanish Speech<br />
Acquisition Following<br />
Cochlear Implantation<br />
Jan Allison Moore, Ph.D., Scott Prath, M.A., and<br />
Adrianne Arrieta, M.A.<br />
The purpose of this paper is to document the early Spanish speech development of<br />
a toddler, K, whose cochlear implant was activated at age 20 months. The contribution<br />
of K’s developmental pattern to research is unique in that Spanish is the sole<br />
language of the home, as well as being the language of intervention up to 16 months<br />
postimplant (3 years chronological age). Early organization of consonant-vowel<br />
structures was consistent with other cochlear implant (CI) recipients who were learning<br />
English and generally support the theoretical perspective that the oral motor<br />
system has a fundamental role in the organization of early speech production. Overall<br />
accuracy of speech of words at 12 months postimplant showed that K had substantially<br />
greater word accuracy compared to English-speaking CI peers with the same age<br />
of implantation and device. These results highlight the phonetic and phonologic<br />
differences between English and Spanish which have direct clinical application in the<br />
provision of speech intervention services to children whose first language is Spanish.<br />
Introduction<br />
Speech and hearing professionals in the United States often have limited<br />
exposure in working with families and children from multilingual homes or<br />
from monolingual homes in which English is not spoken. This exposure is<br />
even more limited in low-incidence disabilities in childhood such as hearing<br />
loss. In addition, most graduate training programs do not routinely offer<br />
Jan Allison Moore, Ph.D., is an assistant professor in the Department of Communication<br />
Sciences and Disorders at the University of Texas at Austin. Scott Prath, M.A., completed his<br />
graduate degree in communication sciences and disorders at the University of Texas at Austin.<br />
He currently works with Spanish-speaking early childhood intervention and school-age populations<br />
in central Texas. Adrianne Arrieta, M.A., received a master’s degree in communication<br />
sciences and disorders from the University of Texas at Austin. She currently works as<br />
a public school-licensed bilingual speech-language pathologist in Pflugerville, Texas.<br />
Early Speech Acquisition in Spanish 321
specific information regarding differences and benchmarks of communicative<br />
development of languages other than English.<br />
This paper has two primary purposes. First, it will serve as an introductory<br />
tutorial of differences between Spanish and English in the area of early speech<br />
development. Second, this paper will discuss emerging speech patterns and<br />
accuracy in a child, K, whose implant was activated at age 20 months and for<br />
whom Spanish is his first language. Our study focuses on Spanish, but it<br />
should be noted that K also began to develop English within the educational<br />
system. It is hoped that speech-language pathologists, audiologists and teachers<br />
of children with hearing loss will have increased awareness of the process<br />
of acculturation of new immigrant families in the United States. This knowledge<br />
should positively impact the ways in which we work with families from<br />
minority backgrounds.<br />
First, an overview of typical speech development will be presented along<br />
with the theoretical background of the Frame Content Theory (MacNeilage &<br />
Davis, 2000). The Frame Content Theory (FC) is the theoretical perspective<br />
that drives our analysis of early speech. This will be followed by some general<br />
statistics regarding Spanish language use in the United States and specific<br />
information on typical development of speech in Spanish, speech development<br />
in children with hearing loss and speech development in children with<br />
cochlear implants (CI). This will be followed by the details of our case study<br />
and implications for service delivery for families from Spanish-speaking<br />
homes.<br />
Review of the Literature<br />
Typical Development of Prelinguistic Vocalization Patterns<br />
The development of the sound system leading up to the production of<br />
words has been well documented (Oller, 1980; Stark, 1980; Vihman, Macken,<br />
Miller, Simmons, & Miller, 1985; Vihman, Ferguson, & Elbert, 1986). The stage<br />
that is of particular importance to this study is the development of true<br />
consonant-vowel (CV) syllables around age 7 months. This stage, the canonical<br />
babbling stage, is significant because the vocalizations sound much more<br />
“speech-like” in that they are syllabic in nature. Canonical babbling lays the<br />
foundation for the rapid timing of syllable production, which is present in all<br />
languages, and the basis for word production. Canonical babbling is defined<br />
as rhythmic production of consonant-vowel (CV) syllables. The syllable<br />
strings in canonical babbling may be reduplicated or variegated. Reduplicated<br />
babbling (e.g., “dudududu”) was once thought to precede variegated<br />
babbling (e.g., “dadi”) but these two forms of syllable production arise during<br />
the same time period (Stark, 1980) rather than sequential stages of development.<br />
322 Moore, Prath, & Arrieta
Theories on Speech Development<br />
Theories vary widely accounting for how and why the speech mechanism<br />
develops to eventually produce meaningful speech. Although it is now generally<br />
accepted that sound qualities in canonical babbling are continuous with<br />
sound qualities in the early word period (Vihman et al. 1985), there are<br />
varying theories as to why preverbal vocalizations and canonical babbling<br />
take place.<br />
The theoretical perspective of this research is one that accounts for the<br />
dependable and universal nature of babbling and the maturation of the oralmotor<br />
system. Davis and colleagues (Davis, MacNeilage, & Matyear, 2002)<br />
addressed these issues biologically in terms of the Frame Content Theory. The<br />
“frame” or structure of speech is provided by the rhythmic oscillation of the<br />
mandible. The “content” (consonants and vowels) of an utterance is placed<br />
within a frame. The FC Theory is based on knowledge of the evolution of<br />
speech and language. The movement of the frame is believed to have<br />
emerged from reflexive motions of ingestion such as eating and sucking.<br />
Vowels (V) evolve from the open aspect of mandibular movements, whereas<br />
the closing phase creates a consonant (C).<br />
At the canonical babbling stage, the tongue and lips do not operate independently<br />
of the rhythmic cycles of the mandible. “Changes in amplitude of<br />
the mandibular cycle would result in height changes for vowels (e.g., [ae]<br />
verses [i]) and manner changes for consonants (e.g., [d] versus [j])” (Davis &<br />
MacNeilage, 1995, p. 3). Further, these researchers state that alternations between<br />
oral and nasal sounds appear when control is gained over soft palate<br />
closure. The basis of babbling exists within the timing and development of the<br />
action and not in descriptions of phonological representations.<br />
Biological assertions relating physical movements to speech cannot be language<br />
specific or dependent. That is to say, speech development is universally<br />
challengeable, and similar outcomes result across an array of ambient<br />
(native) languages. MacNeilage and colleagues (MacNeilage, Davis, Kinney,<br />
& Matyear, 2000) suggest that in early development an infant babbles in<br />
similar patterns regardless of ambient language. In their study on serial organization<br />
in infants across languages, consistencies in babbling productions<br />
were explored across six populations (English, French, Swedish, Japanese,<br />
Brazilian Portuguese and Quichua). Later, Lee (2003) investigated this phenomenon<br />
in Korean. Results of these studies yielded patterns of syllable<br />
organization in words and babbling that contain some universal consistencies<br />
(MacNeilage et al., 2000). These consistencies refer to the distribution of preferred<br />
syllable shapes seen in typically developing children with normal hearing.<br />
These CV syllable shapes include the “pure frame” or labial consonant<br />
(e.g., b, m) followed by a central vowel (e.g., a), the dorsal consonant (e.g., k,<br />
g) followed by the back vowel (e.g., u, o) and the coronal consonant (e.g., t, d,<br />
s) followed by a front vowel (e.g., e, ae). The “pure frame” that occurs when<br />
Early Speech Acquisition in Spanish 323
labial consonants are paired with central vowels are considered “pure” in the<br />
sense that the sound is solely the result of mandibular movement. The consonant<br />
is formed as the lips come together, and the vowel is formed while the<br />
tongue is in a resting position (MacNeilage & Davis, 2000).<br />
Syllables first appear in an infant’s repertoire as monosyllables (Vihman et<br />
al., 1985). Normally these syllables begin with a consonant and end with a<br />
vowel (MacNeilage et al., 2000). MacNeilage and his colleagues also state that<br />
the CV sequence is so important that it is “often given the status of the only<br />
universal syllable type” (MacNeilage et al., 2000, p. 154). Following the appearance<br />
of these syllables in isolation, an infant begins to reduplicate (Oller,<br />
1980).<br />
Reduplicated syllable production (babbling) is the result of repeated oscillations<br />
of the mandible. Mandibular movements appear earlier than lingual<br />
or labial movements in canonical babbling because oscillation is easiest when<br />
the articulators stay in one place (Davis & MacNeilage, 1995; Davis et al.,<br />
2002; MacNeilage & Davis, 2000; MacNeilage et al., 2000). Initially, 50% of the<br />
total syllable is reduplicated and 67% of the consonants are reduplicated<br />
(Davis & MacNeilage, 1995). As the child starts to produce his or her first<br />
words, 30% of the total syllables are reduplicated and 73% of the consonants<br />
are reduplicated (MacNeilage, Davis & Matyear, 1997). As variegated babble<br />
leads into full words, there is very little reduplication in the child’s attempts<br />
at speech (MacNeilage, et al., 2000).<br />
In summary, prelinguistic babbling is the biological result of mandibular<br />
oscillations that are accompanied by phonation (Davis & MacNeilage, 1995;<br />
MacNeilage & Davis, 2000; MacNeilage et al., 2000). Many of these syllable<br />
patterns that are created during babbling are universal, without influence of<br />
ambient language (MacNeilage et al., 2000). This being said, an explanation of<br />
speech development, even for a Spanish-speaking child, would be generic up<br />
until babbling makes the transition into first words (Oller, 1980; Locke, 1983).<br />
With the development of first words we would expect sound sequences intrinsic<br />
to Spanish to emerge.<br />
In regard to children with hearing loss, Oller and Eilers (1988) highlighted<br />
the necessity of audibility in the development of true canonical babbling<br />
defined both by the CV nature of production and also the rapid timing of the<br />
syllables and rapid transitions between consonant and vowel. A few studies<br />
have documented the development of syllables in children following cochlear<br />
implantation (McCaffrey, Davis, MacNeilage, & von Hapsburg, 2000; Moore,<br />
Davis, & Tobey, 2004; von Hapsburg, 2003). CIs provide audibility to the<br />
infant, albeit in a compromised form, in terms of temporal, frequency and<br />
loudness resolution. These preliminary studies have described in detail the<br />
emergence of speech patterns in a small number of children who have received<br />
implants. Overall, early syllable development of these children with<br />
CIs have supported the notion of frame dominance in their syllable organization;<br />
however, other preferred patterns of syllables were also observed,<br />
324 Moore, Prath, & Arrieta
indicating an interaction of a normal oral-motor system, an impaired auditory<br />
system and the effect of learning speech via direct intervention.<br />
Although FC has been supported via studies of both typically developing<br />
children with normal hearing and those with hearing loss, the theory, to our<br />
knowledge, has yet to be tested on a child in which hearing loss and language<br />
difference co-occur. The universal nature that the FC Theory proposes will be<br />
further scrutinized in the discussion of our participant’s vocalization patterns<br />
in Spanish. Therefore, our first question will be: How does K’s syllable development<br />
relate to the results seen with other children with implants and<br />
children from different language groups? With this in mind we will examine<br />
highlights of typical development in Spanish.<br />
Typical Development of Speech in Spanish<br />
The population of Spanish speakers worldwide is approximately 322 million<br />
(Encarta, 2004). In the United States alone, 10% (35 million) of the population<br />
is Hispanic, and this number is projected to double by 2030 (U.S.<br />
Census Bureau, 2000). In the states that border Mexico, the percentage of<br />
speakers using Spanish as their primary language often exceeds 30% of the<br />
population. These demographic changes have increased the possibility that<br />
an interventionist or researcher will come into contact with Spanish and<br />
Spanish-speaking cultures. This becomes problematic when “most speechlanguage<br />
pathologists are not Spanish speakers, [and] may not be sufficiently<br />
aware of the important phonological differences [of] Spanish” (Goldstein &<br />
Iglesias, 1996, p. 82). The international and domestic research communities<br />
have responded with a plethora of information concerning Spanish developmental<br />
tendencies, including work by Acevado, Bedore, Fernandez, Goldstein,<br />
Iglesias, Jimenez, Quilis and Washington.<br />
Phonology<br />
The phonologies of English and Spanish have many similarities (Quilis &<br />
Fernandez, 1999). Although both languages utilize the same alphabet, the<br />
Spanish phonetic system is more concise compared to English. Spanish has 18<br />
consonant phonemes compared to 26 in English (Goldstein & Iglesias, 1996).<br />
These totals do not include allophonic or dialectal variations within either<br />
language. Spanish lacks the glottal stop, the voiced affricate (judge), the<br />
voiced /ð/ and unvoiced // (thigh, thy), the voiced /ʒ/ (azure) and unvoiced<br />
/ʃ/ (shy), the /z/, the /ŋ/ (sing), and the flap /ɾ/ (as in butter).<br />
English, on the other hand, does not employ the trilled /rr/ or the (canyon)<br />
of Spanish (Quilis & Fernandez, 1999).<br />
Spanish Vowels<br />
The Spanish vowel space is like most Latin languages, relying on five<br />
vowels /a/, /e/, /i/, /o/ and /u/ (compared to 13 in English). Diphthongs<br />
Early Speech Acquisition in Spanish 325
are as prevalent in Spanish as they are in English. A Spanish diphthong is the<br />
combination of one hard vowel (/a/, /o/, /u/) and one weak vowel (/i/,<br />
/e/) or the combination of two weak vowels (Quilis & Fernandez, 1999).<br />
When vowels and consonants form syllables, speech patterns that are found<br />
in Spanish can be identified through studying the order of phoneme acquisition,<br />
syllable shape, word length and phonological processes.<br />
Defining normal phonological acquisition for Spanish speakers is difficult<br />
due to the diversity of the populations that are often studied (Goldstein &<br />
Washington, 2001). In English, dialectal variations are generally defined by<br />
vowel differences (Goldstein & Iglesias, 1996). Contrarily, Spanish dialectal<br />
changes are marked by shifts in consonantal classes such as fricatives, liquids,<br />
glides and nasals (Goldstein & Iglesias, 1996). Nevertheless, some similar<br />
trends can be generalized throughout.<br />
Spanish Consonants<br />
There is consensus among many researchers that nearly all phonemes in<br />
Spanish are acquired by four years of age (Acevedo, 1993; Jimenez, 1987;<br />
Anderson & Smith, 1987; Goldstein & Washington, 2001). In one example,<br />
Acevado (1993) found that Mexican-American children acquire all phonemes<br />
by age four except /j/, /l/, // and /s/. Mann and Hodson (1994) cite<br />
Terroro’s 1979 study of Venezuelan children in which he found that after age<br />
four, only /j/, /l/, //, /s/, /r/ and // were not mastered. The differences<br />
regarding outlying phonemes could be the result of differences between the<br />
children studied (Anderson & Smith, 1987), dialectal differences between the<br />
populations (Goldstein & Iglesias, 1996) or variations in the studies themselves<br />
(Acevedo, 1993; Jimenez, 1987). Universally, stop consonants were<br />
acquired first, followed by nasals, then fricatives and affricates, with liquids<br />
being the last sounds to appear (Goldstein & Washington, 2001). This suggests<br />
that K’s development in Spanish should resemble the progression of<br />
sound acquisition of English once auditory input begins.<br />
Syllable Structure in Spanish<br />
The syllable structures in Spanish are highly dominated by CV sequences<br />
(Goldstein & Cintron, 2001). This is a crosslinguistic phenomenon in babbling<br />
(MacNeilage et al., 2000), but Spanish retains the CV-dominated syllable type<br />
in the adult language (Quilis & Fernandez, 1999). Isolated vowels are second<br />
most regular (18%), and syllables that end with consonants (CVC, VC, CCVC)<br />
are the least common (Goldstein & Cintron, 2001). This syllable structure is<br />
vastly different from English, which is dominated by CVC syllable structure.<br />
Syllable Complexity in Spanish<br />
The average length of words in any language is directly related to syllable<br />
structure. Basically, when a language does not support final consonants, such<br />
326 Moore, Prath, & Arrieta
as Spanish, automatically there are a limited number of one-syllable words.<br />
The number of one-syllable words would be restricted to the finite combination<br />
of C+V (Quilis & Fernandez, 1999). This is clearly evident in Spanish.<br />
Goldstein and Cintron (2001) used syllable count to determine word length of<br />
Spanish-speaking children and noted that 83% of the words created were two<br />
syllables in length.<br />
Development of Speech in Children with Hearing Loss<br />
A great deal of research has focused on the role of audition as it relates to<br />
the development of speech (Oller, Eilers, Bull, & Carney, 1985; Yoshinaga-<br />
Itano, Stredler-Brown, & Jancosek, 1992; Steffens, Eilers, Fishman, Oller, &<br />
Urbano, 1994; Yoshinaga-Itano, 1998a, 1998b; Oller & Eilers, 1988; Stoel-<br />
Gammon & Otomo, 1986; Ertmer et al., 2002; Tye-Murray & Kirk, 1993; Kirk,<br />
Sehgal, & Miyamoto, 1997; Tobey, Geers, & Brunner, 1994). Children receive<br />
greater access to language due to discoveries concerning early diagnosis,<br />
treatment and advances in hearing aid fitting techniques (Yoshinaga-Itano,<br />
1998a). Identifying relationships between speech and audition has hastened<br />
and improved therapy (Yoshinaga-Itano et al., 1992). Demonstrating the advantages<br />
of early exposure to the sound system validated the initial “experimental”<br />
attempts at cochlear implantation (Niparko & Wilson, 2000).<br />
It is not enough to say that audition and speech are uniquely intertwined<br />
(Wallace, 1998). Some components of speech and audition develop symbiotically<br />
where one has to be present for the other to exist. Other aspects of<br />
speech and audition develop independently and have been shown to be<br />
present when the other is absent (Yoshinaga-Itano et al., 1992). The interaction<br />
of speech and hearing systems may also differ across time (Oller, 1980),<br />
depending on severity of the hearing loss and concomitant problems (Yoshinaga-Itano<br />
et al., 1992; Wallace, 1998). Additionally, a loss of hearing affects<br />
each parameter of speech (e.g. prosody, perception) in a unique way (Oller &<br />
Eilers, 1988; Oller et al., 1985). A timeline of vocal development assists in<br />
highlighting how speech develops in a child that is hearing impaired.<br />
There has been considerable debate as to whether children who have a<br />
hearing loss vocalize in the same manner as children with normal hearing. As<br />
Oller and Eilers (1988) describe in their study on audition and babbling, this<br />
confusion is the result of treating vocalizations as one developmental period.<br />
When infant vocalizations are categorized into precanonical and canonical<br />
utterances, the relation that speech has to hearing becomes more clearly defined<br />
(Oller & Eilers, 1988). The focus of this particular study is on canonical<br />
vocalizations; therefore, the literature that highlights differences between<br />
typically developing children with normal hearing and those with hearing<br />
loss at the canonical stage will be presented.<br />
Infants with a severe-to-profound hearing loss do not develop the same<br />
canonical vocal patterns that are innate in typically developing children<br />
Early Speech Acquisition in Spanish 327
(Yoshinage-Itano et al., 1992; Steffens et al., 1994; Oller et al., 1985;<br />
Stoel-Gammon & Otomo, 1986). The delay in onset of babble is the most<br />
notable difference. Steffens and colleagues (1994) reported that in infants with<br />
profound hearing loss, canonical vocalizations do not normally appear until<br />
the twelfth month and have been reported to appear as late as the 31st month<br />
(Steffens et al., 1994). In addition, the acoustic characteristics of the timing of<br />
the consonant-vowel components of the syllable are longer than occur in<br />
typically developing children (Oller & Eilers, 1988).<br />
The onset of canonical babble marks a point at which true divisions can be<br />
drawn between typically developing speech in children with normal hearing<br />
and speech produced by a child with a hearing loss. Aberrations in vocal<br />
development are present in the number of productions and the types of<br />
productions, as well as suprasegmental properties such as prosody and duration.<br />
Differences in organization of vocalizations related to lack of syllable<br />
productions in infants with profound hearing impairment can be more clearly<br />
related to a reduction or absence of hearing. This fundamental difference<br />
alters a child’s transition to speech (Wallace, 1998).<br />
Degree of Hearing Loss<br />
The degree of hearing loss is the greatest contributing factor to the impairment<br />
of speech development (Yoshinaga-Itano et al., 1992; Yoshinaga-Itano,<br />
1998b; Wallace 1998). There is a magnitude of difference in speech abilities in<br />
children who operate across the mild-moderate-severe hearing loss continuum<br />
(Stoel-Gammon & Otomo, 1986). Even a minimal amount of residual<br />
hearing greatly improves a child’s chances at producing accurate speech<br />
when compared to a child with no access to the sound system. Degree of<br />
hearing loss is the most reliable source for predicting speech deficits and<br />
intelligibility later in childhood (Yoshinaga-Itano, 1998b; Wallace, 1998). Babbling<br />
in the first year of life is often the focus of studies on speech and<br />
intelligibility of children who are deaf. However, many children who babble<br />
at levels similar to typically developing children with normal hearing do not<br />
develop intelligible speech (Yoshinaga-Itano, 1998b). In her study of 20 children<br />
with HI, Wallace (1998) found that degree of hearing loss was the greatest<br />
predictor of intelligibility and speech ability later in life. At 5-10 years of<br />
age, 82% of those children judged to have a mild-to-severe hearing loss were<br />
intelligible. Contrarily, no child with a severe hearing loss was intelligible.<br />
Wallace concluded that “an exclusive focus on canonical babble . . . will not<br />
provide a full understanding of the development of speech in the deaf and<br />
hard of hearing population because looking at canonical babble alone misses<br />
the issue” (Wallace, 1998, p. 131). Unfortunately, the claims of this study were<br />
confounded by poor methodology. Certainly one cannot predict overall intelligibility<br />
or speech deficits later in childhood from babbling; however,<br />
canonical babbling lays the foundation for speech timing and coarticulation<br />
that is fundamental to speech production.<br />
328 Moore, Prath, & Arrieta
In summary, young children with severe-to-profound deafness exhibit<br />
speech, which is characterized by short, monosyllabic utterances that primarily<br />
consist of bilabial and nasal sounds. The speech may be arrhythmic, varying<br />
in amplitude and reliant on sounds that provide visual or tactile feedback.<br />
The degree of hearing loss greatly influences speech, and in the absence of<br />
hearing there is little to no chance of developing an intelligible speech system.<br />
Understanding this, cochlear implantation has succeeded in giving a child<br />
with profound deafness access to the speech spectrum. The advances in this<br />
field are perpetual and increasingly more accurate. Children who have never<br />
received benefit from amplification usually begin to hear, and their development<br />
is as unique as it is extraordinary. Research has begun to chronicle<br />
speech development along the path from deafness to hearing. Unfortunately,<br />
most of the existing data has been restricted to English-speaking populations.<br />
Development of Early Speech in Children with Cochlear Implants<br />
Much available research describes children on a case-by-case basis, with a<br />
few studies doing comparisons across individuals (Geers & Tobey, 1992). In<br />
comparison studies, however, it is not easy to correlate data because each<br />
child differs in age of implantation, severity of hearing loss, concomitant<br />
issues (e.g., motor impairment), preexisting speech and pre- and postlingual<br />
deafness (Kirk, 2000). However, data on children with cochlear implants can<br />
be collectively summarized to provide projections of speech development.<br />
Additionally, those individual differences that confound studies have been<br />
found to serve as predictors of later intelligibility (Yoshinaga-Itano, 1998a).<br />
Speech Acquisition<br />
Cochlear implantation improves the rate at which a child with hearing loss<br />
moves through early speech developmental stages (Ertmer et al., 2002a, Ertmer,<br />
Leonard & Pachuilo, 2002b; Moore & Bass-Ringdahl, 2002). In a study on<br />
vocal development in young children with cochlear implants, Ertmer et al.<br />
(2002b) documented the speech development of two implanted children.<br />
Eighty-five percent of one participant’s vocalizations were precanonical prior<br />
to implantation and only 14% one year after. The second subject’s development<br />
was less dramatic but still showed a proportional increase in canonical<br />
sounds following implantation. On the average, children implanted at 18<br />
months of age begin canonical babble at 6.5 months postimplant (Moore &<br />
Bass-Ringdahl, 2002).<br />
Upon moving into the canonical stage, children with cochlear implants<br />
tend to acquire sounds in relatively the same manner and order as hearing<br />
children (McCaffrey et al., 1999). This is contrary to infants with profound<br />
deafness wearing hearing aids who typically exhibit delayed and reduced<br />
Early Speech Acquisition in Spanish 329
vocal productions (Oller et al., 1985); however, it should be noted that advances<br />
in hearing aid technology and early identification may also lead to<br />
more normal sequences of development than the set of children reported by<br />
Oller in the mid 1980s. Ertmer and Mellon (2001) followed the vocal development<br />
of a child implanted at 20 months. Their study measured the vocal<br />
development of a child with a cochlear implant to see how her gains compared<br />
to the rate of typical development. Results showed utterance productions<br />
resembling typical developmental patterns but which began later than<br />
normal (postimplant). The fact that the child’s progression of vocal skills<br />
occurred at a rate faster than reported in typical development supports the<br />
notion that implantation during a linguistically rich period can aid in the<br />
acquisition of language (Ertmer & Mellon, 2001).<br />
One of the greatest predictors for determining later developing intelligibility<br />
is identifying the degree of hearing loss (Yoshinaga Itano, 1998b; Geers,<br />
2002; Geers & Tobey, 1992). Yoshinaga-Itano found that “children with profound<br />
hearing loss had significantly poorer speech than children with mild<br />
through severe hearing loss” (1998b, p. 220). Added to this, early onset of<br />
hearing loss has devastating effects on speaking skills (Geers & Tobey, 1992).<br />
Yoshinaga-Itano (1998b) suggests that even a minor amount of residual hearing<br />
vastly improves speech output. She states that the difference is so great<br />
that only two categories of hearing loss are needed: hearing impaired (mild<br />
through severe) and profound.<br />
Age of Onset, Age of Implantation<br />
The age of onset and the age that a child is implanted dramatically alter the<br />
time frame in which a child is learning to speak (Yoshinaga-Itano, 1998b;<br />
Ertmer et al, 2002; Blamey et al., 2001). Ertmer et al. (2002b) present data on<br />
two children who received cochlear implants. Participant D lost his hearing<br />
at age 3 years and was implanted at 7 years, 6 months. Participant B was<br />
identified with hearing loss at age 5 months and was implanted at age 3.<br />
D showed higher preimplant speech variability, probably due to three years<br />
of hearing exposure. After being implanted, he had rapid success in producing<br />
intelligible sounds with errors involving stop consonants and omitting<br />
fricatives. B’s preimplant speech was minimal. Postimplant he began producing<br />
/m/, /b/ and many vowels, but most of his utterances were nonmeaningful.<br />
His speech developed slowly through the precanonical and canonical<br />
stage before making meaningful sound. The authors note that B had other<br />
impairments that slowed his growth. However, the exposure to language that<br />
D received before becoming deaf offered him a quicker, more accurate access<br />
to the sound system.<br />
Much is known about the development of speech following cochlear implantation<br />
due to the multifaceted nature of existing literature. Case studies<br />
and group designs offer insight into the effects of age of implantation, severity<br />
of hearing loss, and situational influences, as well as intelligence. By<br />
330 Moore, Prath, & Arrieta
documenting speech production patterns, tentative norms and developmental<br />
expectancies have been established. However, nearly all of the research<br />
currently available has been derived from English-speaking children. Information<br />
is needed to test the universal nature of some of the existing research<br />
on cochlear implantation. Additionally, clinicians working in the field need<br />
developmental norms in order to serve a culturally diverse population.<br />
This case study is an effort to provide such culturally and linguistically<br />
sensitive information. The following questions are posed by using a longitudinal<br />
case study method during the first 17 months postimplant of a<br />
Spanish-speaking child: (1) Will babbling and first word consonant-vowel<br />
co-occurrence patterns in Spanish differ from that of typically developing<br />
children and English-speaking children with cochlear implants? (2) Will the<br />
timeline of development of canonical babbling be consistent with other children<br />
implanted at the same age? (3) What is the impact of language use<br />
(Spanish or English) on accuracy of speech production at 1 year postimplant?<br />
(4) Will our participant’s overall accuracy in Spanish differ from CI peers who<br />
are in English-speaking families?<br />
Methods<br />
Participants<br />
The focus of this study was to follow the serial organization of early speech<br />
of a monolingual Spanish-speaking CI recipient. Our participant, K, lives with<br />
his parents and one older brother. K’s brother speaks Spanish and has learned<br />
English in school and would be considered a balanced sequential bilingual.<br />
This means that his English and Spanish skills are equivalent and that language<br />
development in his first language, Spanish, was mastered prior to the<br />
introduction of English at age six. The parents’ only language is Spanish. K’s<br />
parents have a large social network of relatives and friends who all speak<br />
Spanish. The parents reported all electronic and print media in the home was<br />
in Spanish, with the exception of K’s brother’s school texts. Spanish was also<br />
the language of all speech and audiology intervention that K and his family<br />
received up to three years of age. His early intervention utilized an oral-aural<br />
approach in Spanish. At age three he was enrolled in an English oral preschool<br />
program for children with hearing loss within the local school system.<br />
There was no oral Spanish preschool programming available to the family in<br />
the community. An oral education methodology was selected by his parents<br />
as part of his early intervention and preschool programming. Spanish was<br />
also exclusively used in the interactions of all three authors with the family<br />
during the course of this study.<br />
K was identified as having a profound sensorineural hearing loss at birth.<br />
There is a positive history of hereditary hearing loss within his extended<br />
family. He received a Nucleus 24 M device in the right ear that was activated<br />
Early Speech Acquisition in Spanish 331
at 20 months of age. His surgery was unremarkable will a full insertion of the<br />
electrode array. He utilizes the ACE (Advanced Combination Encoder) strategy.<br />
His medical history is unremarkable except for the presence of rightsided<br />
motor weakness that was noted in infancy. The parents did not provide<br />
any specific information regarding the etiology of this condition. His motor<br />
asymmetry has become less apparent as he has grown and has not impacted<br />
his ability to engage in gross motor skills such as walking or throwing. He is<br />
left handed. It is not certain whether this is due to natural occurrence or due<br />
to restricted use of his right hand in infancy. Fine motor skills were not a<br />
reported concern of the parents during the study period. His preverbal communication<br />
was normal, with K engaging in turn-taking, gesturing, facial<br />
expression and appropriate eye contact, which provided further evidence of<br />
normal nonverbal communicative development.<br />
To answer the third question on the accuracy of speech production across<br />
languages, data from four other children who received Nucleus 24 implants<br />
between 18-20 months were used as a control group. Like K, the children in<br />
the control group had uneventful medical and surgical histories. Data collection<br />
and analysis for this group was identical to that of K. These children were<br />
also participants in research on longitudinal speech production following<br />
cochlear implantation. The group was composed of two boys and two girls<br />
from two-parent, middle-class, English-speaking homes. The children in the<br />
control group were being educated orally.<br />
Data Collection, Transcription, Reliability and Analysis<br />
Data were obtained in the home at monthly intervals one month prior to<br />
implantation and continued monthly postimplant for the duration of the<br />
study. The participants were videotaped in natural play contexts with their<br />
parents and all three of the authors. Sessions were 45-60 minutes in duration.<br />
Data were collected using a Canon digital video recorder and aided by a Telex<br />
wireless microphone that K wore.<br />
The second and third authors transcribed each recording. Speech-like productions<br />
including consonant- and vowel-like productions that occurred in<br />
isolation or in syllables were transcribed and classified using the International<br />
Phonetic Alphabet. The transcription included all productions that were produced<br />
independently, via imitation, or prompting. Transcriptions included<br />
all vocalizations that were babbling or speech-like in nature. The following<br />
types of vocalizations were transcribed: singleton vowel productions, singleton<br />
consonant productions (nasals, fricatives), and CV or VC syllables.<br />
Laughing, crying and other nonspeech vocalizations were not transcribed.<br />
Syllables including glottals (e.g., /h/) were excluded from the analysis because<br />
these speech sounds are not produced in the oral cavity. The data were<br />
entered into the Logical International Phonetics Programs or LIPP (Oller &<br />
Delgato, 1993) for analyses of accuracy and syllable shape. Target productions<br />
332 Moore, Prath, & Arrieta
were determined by the child’s productions, knowledge of their expressive<br />
language vocabulary and the overall context of the child’s interactions with<br />
toys or with his parents. At the times, parents would indicate the target form<br />
of a word.<br />
Ten percent of the data were analyzed for reliability. A graduate student in<br />
speech-language pathology who was not directly involved with the project<br />
provided the reliability for each of the sessions. Reliability consisted of calculating<br />
point-to-point consistency of both vowels and consonants for each<br />
utterance analyzed. Reliability for vowel transcription was 79%, and subsequent<br />
analysis of the data suggested many of the transcription differences<br />
regarded height of the vowel. For example, in a few instances the reliability<br />
transcriber heard high-front (/i/), whereas the original transcriber recorded<br />
front-central vowels. Differences in regard to position (e.g., central for back)<br />
did occur but only in a few instances. Reliability for consonant transcription<br />
was 75% for sessions between 0-6 months postimplant but improved to 90%<br />
as K entered his second year of device use. With consonants, most of the<br />
sounds transcribed were congruent. Class differences were the main sourceof<br />
error (e.g., /b/ for /d/) usually confusing alveolar and bilabial sounds.<br />
CV co-occurrence patterns were classified according to the FC Theory by<br />
place of articulation, and observed-to-expected ratios calculated to determine<br />
whether each pattern occurred significantly above chance. In addition, chisquare<br />
tests of significance were performed for each age interval and group<br />
to determine whether the observed co-occurrence patterns occurred more<br />
frequently than by chance.<br />
Results<br />
Onset of Canonical Babbling<br />
The growth of K’s speech relative to the activation of his CI is commensurate<br />
with data recently reported by Moore and Bass-Ringdahl (2002). There<br />
was an increase in vocal play after CI activation while a surge in vocalizations<br />
and canonical babble occurred approximately six months postactivation.<br />
See Figure 1 for the growth in syllables produced in the first six months<br />
postimplant.<br />
CV Co-Occurrence Patterns<br />
K’s intrasyllabic CV co-occurrence patterns were examined to see whether<br />
they were consistent with the predictions of the Frame Content Theory. The<br />
chi-square tests of significance indicated that K did show a slight trend for<br />
production of the preferred CV syllable patterns seen in typically developing<br />
children during the first six months of implant use; however, the results were<br />
Early Speech Acquisition in Spanish 333
Figure 1. Growth of syllable productions over the first six months postimplant.<br />
nonsignificant. Insufficient data were obtained to test the hypothesis for dorsal<br />
consonants at the 1-6 month interval. At the 8-10 month interval and the<br />
13-16 month interval, K consistently produced coronal-front syllables that<br />
would be expected under frame dominance; however, he also produced patterns<br />
which would not be expected, such as dorsal consonants paired with<br />
central vowels. The chi-square tests at the 8-10 month interval ( 2 (df=4)=<br />
19.91, significant) and the 13-16 month interval ( 2 (df = 4) = 22.29, significant)<br />
were statistically significant, indicating that the patterns observed are significantly<br />
different from those that would occur by chance. Table 1 illustrates the<br />
intrasyllabic CV co-occurrence patterns for each of the age intervals. Overall,<br />
these results are consistent with syllable development of monolingual English<br />
learning CI infants and toddlers (Moore, Davis, & Tobey, 2004).<br />
Syllable Shape<br />
The overall content of K’s speech can be described as having a high percentage<br />
of CV syllables (51%), followed in frequency by singleton vowels<br />
(21%). VC combinations made up 8% of the vocalizations, and singleton<br />
consonants, primarily /m/, were present in 6% of K’s vocal attempts. There<br />
was a consistent growth in all syllable types across the six sessions with the<br />
exception of VCV (e.g. /b/). The VCV vocalizations were initially made in<br />
isolation. As utterance length increased, this combination appeared less frequently.<br />
334 Moore, Prath, & Arrieta
Table 1. Observed-to-Expected Ratios for CV Co-Occurrence Patterns From 0-6,<br />
8-10 and 13-16 Months Postimplant<br />
Group<br />
Vowel<br />
Accuracy<br />
At the 12-month postimplant interval, overall accuracy for word productions<br />
was calculated for K and four English-speaking controls who had received<br />
their CIs at the same chronological age as K. At 12 months<br />
postimplant, K’s overall accuracy level was 60% compared to an average of<br />
23% accuracy for the four English-speaking children. These results are found<br />
in Figure 2.<br />
Discussion<br />
Production<br />
Consonant<br />
Coronal Labial Dorsal<br />
0-6 m Front 1.09 0.88 —<br />
Central 0.98 1.02 —<br />
Back — — —<br />
8-10 m Front 1.22 0.99 0.36<br />
Central 1.01 0.94 1.18<br />
Back 0.60 1.31 1.17<br />
13-16 m Front 1.16 0.51 1.06<br />
Central 0.84 0.94 1.09<br />
Back 1.11 0.80 0.69<br />
Note. Values exceeding 1.0 indicate CV patterns exceeding chance; however, the data at the 0-6<br />
month interval were not statistically significant. The distribution of syllable shapes at the older<br />
age intervals was statistically significant, indicating that the distribution is different from that<br />
occurring by chance. Patterns bolded in the shaded boxes are consistent with the FC Theory.<br />
Those patterns bolded in unshaded boxes are occurring at greater-than-chance levels but are not<br />
consistent with the frame dominance theory.<br />
The purpose of this study was to document speech productions of a prelinguistically<br />
deaf, Spanish-speaking child who received a cochlear implant at<br />
20 months of age. In the process of gathering this information, other discoveries<br />
were also made regarding the uniqueness of how Spanish develops<br />
when auditory input is delayed. Many similarities do exist between Spanish<br />
and English concerning gross developmental features such as timing, content<br />
and order of sound acquisition. However, linguistic features of Spanish also<br />
uniquely influence other aspects of speech production such as accuracy.<br />
Onset of Canonical Babbling<br />
The growth in speech production across the first six months postimplantation<br />
is commensurate with data introduced by Moore and Bass-Ringdahl in<br />
Early Speech Acquisition in Spanish 335
Figure 2. Mean accuracy data for English-speaking children (1-4) and K at one<br />
year postimplant. All the children were implanted at 18-19 months of age. K’s<br />
accuracy exceeded that of English speakers due to a more concise phonetic<br />
structure of the language and a preponderance of CV word shapes in Spanish.<br />
These forms would be easier to master at a younger age.<br />
2002. Equal to the nine children that were followed in their study, canonical<br />
vocalizations emerged for K at six months, three weeks. The process of activation<br />
can be characterized by an immediate increase in vocalizations, a<br />
period of development in which each individual child shows gains and regressions,<br />
a hiatus or decrease in activity, followed by an explosion in speech.<br />
Further research is needed to identify whether there are true milestones at<br />
months two through five. For instance, if all children uniformly experience a<br />
hiatus or a regression prior to incredible gains, then the increase at six months<br />
will be predictable, and therapy can be planned to take advantage of this time<br />
of growth. This data suggest that the immediate increase in speech development<br />
at six months postimplant is not dependent on the ambient language of<br />
the speaker, intervention or simply audibility.<br />
The explosion in speech production at six months postactivation is matched<br />
by an increase in syllable diversity. Large syllable strings (eight to eleven)<br />
were present in single instances throughout the first five months postactivation.<br />
By the end of the data collection period, large syllable sequences were<br />
recorded in abundance. This data suggests that the “explosion” that has been<br />
shown to occur six months postactivation is an increase in number as well as<br />
complexity.<br />
CV Co-Occurrence Patterns<br />
K’s CV co-occurrence pattern of CV syllables produced in both babbling,<br />
and word attempts were consistent with previous studies of children with CI.<br />
336 Moore, Prath, & Arrieta
His Spanish language use did impact his organization of early CV syllables<br />
compared to CI peers exposed to English. Although some aspects of K’s CV<br />
pairs were consistent with that of typically developing children, other patterns<br />
were inconsistent. This would indicate that children with CIs exhibit<br />
more normal serial organization of speech, but not normal development.<br />
Longitudinal studies on this topic will help determine whether this different<br />
serial organization of early speech impacts speech intelligibility during the<br />
preschool years or later.<br />
Syllable Shape<br />
When viewing consonant and vowel co-occurrence as a whole, K’s speech<br />
was dominated by open syllables (ending in a vowel), which is congruent<br />
with the speech of children with hearing loss (Oller et al., 1985; Oller & Eilers,<br />
1988; Yoshinaga-Itano et al., 1992; Davis et al., 2002), as well as with the<br />
Spanish language (Goldstein & Cintron, 2001).<br />
Accuracy<br />
The phonemic and syllable structure of Spanish heavily influenced overall<br />
word accuracy measures at 12 months postimplant. K’s overall accuracy<br />
clearly exceeded that of peers exposed to English. A more concise vowel and<br />
consonant structure as well as a preponderance of CV syllables that would<br />
lead to vowel final consonants in Spanish likely affected this accuracy score.<br />
Therefore, clinicians working with Spanish-speaking children and families<br />
should expect higher levels of accuracy in the earlier stages of speech development.<br />
As vocabulary increases, more complex multisyllabic words will<br />
need to be mastered by Spanish speakers, and it is likely that overall accuracy<br />
may drop as children attempt these complex forms. Thus, there appears to be<br />
a phonetic and phonologic trade-off between Spanish and English. In Spanish,<br />
the concise vowel space and consonant repertoire coupled with open<br />
syllables (CV) leads to increased accuracy on two-syllable word forms typical<br />
in Spanish. In contrast, the more complex English phonology and CVC word<br />
forms lead to less accuracy at the early word stage.<br />
Conclusions<br />
Our participant, K, has made significant progress in Spanish language<br />
acquisition in his first 16 months postimplant. Clinicians working with Spanish-speaking<br />
children should emphasize the phonetic and syllable structure<br />
of the native language in early intervention programs. Like children with<br />
normal hearing, it is hoped that as the sound system and lexicon of a first<br />
language are established, children like K will develop competent English<br />
skills as well over time.<br />
Early Speech Acquisition in Spanish 337
Although the knowledge that currently exists today regarding Spanish<br />
development and at-risk populations is extremely limited, it is hoped that<br />
case studies like this one will contribute to improved services to children and<br />
families from minority language backgrounds. This limited knowledge is a<br />
major concern considering the high number of Spanish-speaking clients on<br />
the caseloads of current speech-language pathologists and audiologists. Future<br />
research is needed to expand our research knowledge of how Spanish<br />
develops when hearing is absent or diminished and when audibility is restored<br />
using a cochlear implant.<br />
Future studies of one or more children similar to K are needed to compare<br />
with the findings from this study. This study is limited by having only one<br />
participant. As more Spanish-speaking children receive cochlear implants,<br />
the pool on which studies can be based will be broadened. Knowledge concerning<br />
verbal productions of Spanish-speaking CI children will greatly aid<br />
the professional populations that serve Spanish-speaking children by providing<br />
norms or guidelines for development.<br />
Acknowledgments<br />
This research is supported by the National Institutes of Health research<br />
grant R-01 HD277733-03 (The University of Texas).<br />
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Early Speech Acquisition in Spanish 341
The Volta Review, Volume <strong>106</strong>(3) (monograph), 343-364<br />
Bilateral Cochlear<br />
Implantation in Children:<br />
Experiences and<br />
Considerations<br />
Andrea Bohnert, M.T.A.-F., Vera Spitzlei, Dipl.-Ing.,<br />
Karl L. Lippert, Ph.D., Dipl.-Ing., and Annerose Keilmann, M.D.<br />
Between 2000 and 2006, the University Clinic for Ear Nose and Throat and<br />
Communication Disorders in Mainz, Germany, performed 41 bilateral cochlear implantations<br />
in children. This article addresses some of the factors to be considered in<br />
a decision to bilaterally implant a child, including the age of the child at the first<br />
implant, the length of time between the first and second implants, the age of the child<br />
at the time of the second implant and the level of auditory learning experienced with<br />
the first implant. At the time the article was written, 33 of the 41 children were able<br />
to participate in speech discrimination testing in quiet and in noise. The children’s<br />
localization abilities were also reported. All of the tests concerning hearing, localization<br />
and speech understanding with the implants were conducted as part of the<br />
child’s regularly scheduled appointments to verify the settings of each speech processor<br />
and the performance with both implants. The information shared in this article<br />
reflects findings from clinical practice and was not obtained in a controlled research<br />
protocol. Nevertheless, the experiences and observations reported are clinically relevant<br />
to those involved in or contemplating bilateral cochlear implantation of young<br />
children.<br />
Andrea Bohnert, MTA-F, holds teaching posts at the University Clinic Mainz and the Teaching-Unit<br />
for Logopedics and is senior MTA-F in audiology and pedaudiology at the University<br />
Clinic for ENT and Communication Disorders in Mainz, Germany. Vera Spitzlei, Dipl.-Ing.,<br />
is a member of the audiology team at the University Clinic for ENT and Communication<br />
Disorders in Mainz, Germany. Karl L. Lippert, Ph.D., Dipl.-Ing., holds teaching posts in<br />
electroacoustics and audiology at the University Clinic Mainz and at the Teaching-Unit for<br />
Logopedics. Annerose Keilmann, M.D., is a senior physician at the University Clinic for<br />
Communication Disorders in Mainz, Germany, and head of the department of communication<br />
disorders at the University Clinic for ENT, also in Mainz.<br />
Bilateral Cochlear Implantation in Children 343
Introduction<br />
Since the early 1980s, when multichannel cochlear implants (CIs) became<br />
available, cochlear implantation has become a widely accepted treatment of<br />
severe hearing disorders in patients of all ages in Europe and the United<br />
States. During the following decade and a half, unilateral cochlear implantation<br />
was routinely performed at the University Clinic for Ear, Nose, and<br />
Throat (ENT) and Communication Disorders in Mainz, Germany (Biesalski,<br />
Lippert, & Bohnert, 1985). In the early 1990s, workgroups in Australia began<br />
investigating the potential of bilateral cochlear implantation (van Hoesel,<br />
Tong, Hallow, & Clark, 1992). In 1996, an adult patient in Wuerzburg, Germany<br />
was successfully implanted with two multichannel devices. Four weeks<br />
after the initial fitting, this patient demonstrated significant improvement in<br />
speech recognition in quiet and in noise. Two years later, the Wuerzburg team<br />
performed the first bilateral implant in a child (Mueller, 1998, 1999). The<br />
success of these first two cases led to further investigations (Kuehn-Inacker,<br />
Shehata-Dieler, Mueller, & Helms, 2004) and influenced the acceptance of<br />
bilateral cochlear implants in children (Mueller, 2005).<br />
In 2000, following the success in Wuerzburg, the first pediatric bilateral<br />
cochlear implant surgery was performed at the University Clinic for ENT and<br />
Communication Disorders at Mainz, Germany. In the intervening six years,<br />
41 children have been bilaterally implanted. This article presents some of the<br />
clinical considerations and guidelines in pediatric bilateral implantation that<br />
have evolved from experiences with those young patients and reports on the<br />
children’s sound localization abilities and speech discrimination in quiet and<br />
in noise conditions.<br />
Guidelines in Bilateral Implantation<br />
In 2005, a panel convened at the Second Meeting Consensus on Auditory<br />
Implants in Valencia, Spain published a consensus statement on bilateral<br />
cochlear implants (Offeciers et al., 2005). Included in the consensus statement<br />
were recommendations for the fitting of two cochlear implants in the following<br />
types of patients: (1) those in whom the benefits obtained with one cochlear<br />
implant is poor, (2) patients with meningitis who develop cochlear<br />
ossification (with recommendations to perform implantation as soon as possible<br />
to achieve full implantation) (3) children with permanent bilateral profound<br />
hearing loss (with recommendations to pay special attention to young<br />
children who are in their speech and language acquisition years) and (4) in<br />
adults who want to restore binaural hearing or need it in order to remain in<br />
their chosen profession (Offeciers et al., 2005; Hoth, 2006).<br />
In the discussion of the staging of bilateral implants, there was consensus<br />
that one-stage bilateral implantation surgeries are more cost effective but<br />
should only be conducted by experienced surgeons and centers. Regarding<br />
344 Bohnert, Spitzlei, Lippert, & Keilmann
the time interval between the two surgeries in children, the recommendation<br />
was that a short interval of less than 6-12 months “enables prelingually deaf<br />
children to achieve good performance with the second implant within a few<br />
weeks” (Offeciers et al., 2005, p. 918). A longer period between surgeries<br />
would increase the probability of a longer and more intense period of habilitation<br />
for the child to become accustomed to a second implant.<br />
Advantages of Binaural Hearing<br />
In the normal auditory system, binaural hearing provides advantages that<br />
are unavailable to the listener with unilateral hearing. For example, spatial<br />
hearing, localization, and signal source discrimination in quiet as well as<br />
noise are possible only with binaural hearing. During localization, individuals<br />
with binaural hearing use interaural time and level differences (headshadow<br />
effect), as well as diffraction phenomena, sonic reflections at the<br />
auricle and the so-called squelch effect (Laszig et al., 2004; Schleich, Nopp, &<br />
D’Haese, 2004) to determine where the sound source originates. Thus, binaural<br />
hearing provides significant advantages, especially in noisy environments<br />
(Blauert, 1974). These studies led to the presumption that bilateral<br />
implantation can provide advantages to children with hearing loss.<br />
With the advantages of the normally functioning binaural system serving<br />
as a model (Blauert, 1974), several goals that support bilateral implantation in<br />
children can be determined. These include: (1) to provide hearing thresholds<br />
in the non-implanted ear that could permit the development of speech discrimination<br />
ability, (2) to decrease listening effort, (3) to provide the possibility<br />
of localization for increased safety in daily life (traffic, etc.) and (4) to<br />
increase speech discrimination in noise.<br />
Parent Acceptance of Bilateral Cochlear Implantation<br />
The decision to pursue a cochlear implant is a challenging process for many<br />
parents. When the option of bilateral cochlear implantation has been presented<br />
to parents at our center, almost all of them have ultimately elected a<br />
two-stage implantation process rather than simultaneous surgeries. There are<br />
several factors that guide families in the decision to pursue unilateral implantation<br />
before proceeding to a second device. Some parents are concerned that<br />
the implant will not provide sufficient auditory benefit to their child and<br />
want evidence of success before proceeding. Or, a family may elect to “save”<br />
one ear for the possibility of medical or technological advances that provide<br />
a different treatment option. The situation in which parents seem to be most<br />
comfortable pursuing bilateral implantation occurs when a child becomes<br />
deaf following meningitis. The risk of rapid cochlear ossification following<br />
meningitis reduces the likelihood of optimal implant success if the surgery is<br />
Bilateral Cochlear Implantation in Children 345
delayed, thereby increasing parental acceptance of simultaneous bilateral implantation.<br />
It is essential to discuss parents’ expectations regarding their child’s auditory<br />
development when he or she receives the first implant and again upon<br />
receiving the second implant. It has been our experience that fitting a child<br />
with a cochlear implant often creates high expectations in parents. When a<br />
second implant is being pursued, expectations can be even higher. Most<br />
parents who seek bilateral implantation are pursuing “normalcy” for their<br />
child. Their objectives are for their child to go to school with their hearing<br />
peers and develop as a child with normal hearing. There are cases in which<br />
this is possible, but surgery alone cannot assure this outcome. Interdisciplinary<br />
collaboration and communication among the family, pediatric audiologists,<br />
physicians, early interventionists and other therapists are necessary for<br />
parents and professionals to understand the complexities of each case and to<br />
attempt to establish reasonable expectations for all involved. Many factors<br />
affect outcomes for each child, including the age of the child at the first and<br />
second implants and the length of time between the two implants. Resources<br />
for therapy in the family’s community and their commitment to following<br />
through with therapy and reinforcing it at home significantly affect outcomes.<br />
To the degree possible, all of the factors that can influence the child and<br />
family in their daily routines should be identified and discussed in relation to<br />
the cochlear implants.<br />
Timing the Second Implant Surgery<br />
A growing body of research (Govaerts et al., 2002; Manrique, Cervera-Paz,<br />
Huarte, & Molina 2004; Zwolan et al., 2004; Keilmann, Gaida, & Limberger,<br />
2005; Kral, Hartmann, Tillein, Heid, & Klinke, 2002a; Kral, Hartmann, Tillein,<br />
Heid, & Klinke, 2002b; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998; Yoshinaga-Itano,<br />
2002) has provided evidence that children with profound hearing<br />
loss who receive a cochlear implant by their second birthday achieve higher<br />
scores on speech discrimination testing and do so at a faster rate than children<br />
with similar hearing losses who are implanted later in life. The results of<br />
studies demonstrating improved success of children unilaterally implanted at<br />
younger ages (Sharma, Dorman, Spah, & Todd, 2002), combined with studies<br />
regarding the benefits of binaural hearing in normally hearing children, have<br />
provided support for bilateral cochlear implantation in children at younger<br />
ages.<br />
Challenges in Binaural Fitting of Speech Processors<br />
The initial fitting of the second speech processor should be conducted as an<br />
independent fitting, entirely distinct from the fitting of the first speech processor.<br />
Because each cochlea has a unique anatomy, as well as physiologic<br />
346 Bohnert, Spitzlei, Lippert, & Keilmann
conditions, it is seldom, if ever, possible for the electrode array to be placed<br />
in exactly the same configuration in both ears. As a result, fitting should be<br />
conducted as an individualized process for each ear, even in the same patient.<br />
For these same reasons, the first processor’s map should never be used as the<br />
basis for the initial fitting of the second processor. Among the children fitted<br />
with binaural cochlear implants in this clinic, none have had identical maps<br />
in both of their speech processors.<br />
Perceiving, processing, storing and retrieving auditory information are<br />
complex tasks. Children who are candidates for cochlear implants have a<br />
wide range of abilities and strategies for performing these tasks. Although the<br />
most important and fundamental principle in cochlear implant fitting is that<br />
every fitting is unique, to achieve a “good cochlear implant fitting” for each<br />
child a few universally valid fitting guidelines are recommended.<br />
Most important is that the child should never be overstimulated during the<br />
fitting procedure. Overstimulation creates an association between “hearing”<br />
and pain, which immediately reduces the likelihood of a successful fitting of<br />
the speech processor. A second principle is that within the first fitting session,<br />
all channels that are available for stimulation should be activated. At our<br />
clinic this occurs over the first week of fitting. Once all channels are activated,<br />
subsequent increases in current levels will produce stimulation patterns without<br />
changing the basic sound characteristics. This applies to cochlear implant<br />
systems running the authentic CIS strategy (i.e., fast, continuous stimulation<br />
on all electrode-channels). During each stimulation cycle, all channels will be<br />
activated and are able to provide information. Stimulation patterns produced<br />
by using feature extraction only contain parts of the original input signal.<br />
Interpolation of channel settings should be avoided. Individual testing and<br />
verification of all settings of each channel are necessary to achieve maximum<br />
benefit, as even small changes in fitting data may cause significant changes in<br />
the child’s hearing sensation (Lippert & Bohnert, 2005; Bohnert, 2005). And<br />
finally, the effect of binaural loudness summation must be considered during<br />
fitting of the second ear. Summation intensity may differ considerably from<br />
child to child; thus, careful attention to this phenomenon is essential in each<br />
fitting. In some cases the summation effect leads to an obvious change in the<br />
child’s behavior. When this occurs, the stimulation level of the first fitted ear<br />
is reduced step-by-step until “normal” is reestablished.<br />
Influence of Age on Second Processor Fitting<br />
Children younger than two years appear to experience the least difficulty<br />
adjusting to a second implant and the resulting bilateral auditory signal.<br />
Among children at this age, hearing with a cochlear implant is still in the<br />
initial stages, and integration of the second signal into the child’s existing<br />
auditory processing strategies is more easily accomplished. This factor, combined<br />
with the shorter period between the first and second implants, makes<br />
Bilateral Cochlear Implantation in Children 347
fitting the second processor easier in younger children. Regardless of the<br />
child’s age, fitting the second processor must be done cautiously in a stepby-step<br />
process. At the University Clinic in Mainz, speech processor fittings<br />
are accomplished during two one-week inpatient hospital stays. During the<br />
first fitting session, each electrode in the array is activated. As electrodes are<br />
activated and added to the array, the child’s responses to a wide variety of<br />
sounds, experienced in everyday situations, are observed by the family and<br />
clinic staff. On the basis of observations and reports of behavioral changes,<br />
the electrodes may be adjusted. This collaborative effort by the family and<br />
staff is very beneficial, so that by the end of the week the child has been fitted<br />
to an effective level of performance. During the second stay, the child’s behavior<br />
is observed and fine tuning of the speech processor is completed.<br />
After age 2, the process of fitting the second cochlear implant can become<br />
more complex. As the children become older at the age of the second implant,<br />
or as the length of time between implants increases (the two factors are often<br />
related), a variety of responses to bilateral stimulation have been observed. In<br />
either case, the child has had a longer period of time to become accustomed<br />
to the speech signal provided by a single implant. Some children accept the<br />
second implant without complications or resistance, even when there has<br />
been a considerable delay between the first and second cochlear implant<br />
surgeries. In other cases, introduction of additional sound from a second<br />
implant can confuse or irritate the child. To reduce a negative response to<br />
stimulation provided by the second implant, fitting should proceed in a careful<br />
and systematic manner. In some rare cases, it will be helpful to set processor<br />
levels in a way that stimulation is below the threshold of perception at<br />
the initial fitting. Thus, the auditory nerve and auditory cortex are slightly<br />
stimulated without disturbing the child. Increasing stimulation intensity in a<br />
step-by-step manner while carefully observing the child’s behavior appears to<br />
increase acceptance of the second processor.<br />
When the child is able to tolerate an initial stimulation level of the second<br />
implant beyond the threshold of perception, speech discrimination scores<br />
with bilateral activation often decrease. Because each child has a unique<br />
history of auditory experiences, cochlear implant benefit and neurological<br />
maturation, it is not possible to predict accurately the length of time speech<br />
discrimination might be adversely affected. It has been reported, as also observed<br />
at our clinic that, after a period of acclimatization, the child’s speech<br />
discrimination scores improve and scores with bilateral activation become<br />
superior to previous unilateral speech discrimination scores (Kuehn-Inacker<br />
et al., 2004).<br />
Habilitation<br />
In Germany, there are several possible scenarios for habilitation/rehabilitation<br />
that vary according to location. In most cases the initial fitting of the<br />
device takes place in the clinic where the patient received his or her cochlear<br />
348 Bohnert, Spitzlei, Lippert, & Keilmann
implant. All of the subsequent adjustments as well as the habilitation/<br />
rehabilitation will occur at that clinic. Some clinics provide the option of an<br />
inpatient stay; others can only provide outpatient appointments. The University<br />
Clinic for ENT and Communication Disorders, Mainz, is able to provide<br />
an inpatient stay in the hospital. Younger children under age 5 or children<br />
with multiple handicaps must be accompanied by parents or caregivers.<br />
Many of the older children attend their inpatient stay without parents. Typically,<br />
the child is initially seen for one week. Then, following a four-week<br />
period of habituation, the child has one more week of inpatient stay, during<br />
which programming is adjusted. During this time, the audiologists, speechlanguage<br />
pathologists and other professionals have the opportunity to see the<br />
child several times per day. This provides the opportunity to pay special<br />
attention to the child’s individual needs.<br />
All specialized therapies can be tailored to each child’s specific needs. Most<br />
of the children are very familiar with the clinic because it is the same place<br />
they go for hearing evaluations and hearing aid fittings and know the physicians,<br />
audiologists and other therapists. In most cases the staff has known<br />
the child and family since the child was first diagnosed. Therefore, a relationship<br />
has been established over a period of months and often years that creates a<br />
sense of confidence on the part of both the family and the professionals.<br />
In our clinic, clinical testing occurs every three months during the first year<br />
after cochlear implantation. Between 12 and 24 months after the first fitting,<br />
appointments are made twice a year or more often if needed. In addition, an<br />
annual speech and language evaluation occurs. The cochlear implant team<br />
also meets with the child’s early interventionist once or twice a year to discuss<br />
the child’s progress.<br />
An important aspect in fitting the second processor is balancing pitch and<br />
loudness in comparison to the contralateral side. This has to be checked both<br />
in therapy sessions as well as at home. Families have the opportunity and<br />
responsibility to observe the children at home where the acoustic conditions<br />
are quite different from those in the fitting and therapy environments.<br />
To reinforce the child’s awareness of sound in the newly implanted ear,<br />
therapy should be conducted with the first implant turned off, and parents<br />
are advised to have their child experience hearing with the new processor<br />
alone for a certain portion of the day.<br />
Several factors should be considered in devising an appropriate therapy<br />
plan. The child’s age at implantation and the time between fittings are very<br />
critical factors. Beginning at age 2 1 ⁄2, children become aware of themselves<br />
and their environment. For example, children at that age who have used one<br />
implant for a while are often reluctant to “give away their good ear.” If<br />
children have adequate language development, they can be told that their<br />
second ear has been “sleeping” for a while and now has to be awakened very<br />
carefully. With a shorter time period between the two implantations, integration<br />
of the new implant and auditory synchronization will develop more<br />
Bilateral Cochlear Implantation in Children 349
quickly and naturally. Children who receive their second implant during the<br />
preverbal or early language development usually accept bilateral stimulation<br />
after a very short time.<br />
When there has been a period of more than two years between implants, a<br />
more intense and time-consuming habilitation phase should be anticipated<br />
for the second implant. As a general rule, the longer the time between implants,<br />
the more extended the habilitation process is likely to be. In children<br />
who received their first implant at an older age, the training in sound localization<br />
and discrimination of speech in noise will require more intensity and<br />
a longer time period.<br />
Loudness Scaling<br />
As soon as possible, loudness scaling should be conducted to attain more<br />
detailed information about hearing sensations following electrical stimulation<br />
(Zorowka, Heinemann, & Bohnert, 1995). Up to a developmental age of approximately<br />
four years, balancing binaural cochlear implants has to be based<br />
upon the results of aided audiometry and behavioral observation. This will<br />
also be the case for children with multiple disabilities or those who have not<br />
attained a developmental age of four to five years. For all of these children,<br />
testing each ear separately in free sound field, with different frequencies of<br />
narrow-band noise as the test stimuli, can provide basic information for balancing.<br />
Determining balancing information from behavioral observation is<br />
very difficult because competency at localization of the sound source is required<br />
for this task. Most children require a long period of bilateral cochlear<br />
implant use to develop localization abilities.<br />
An effective tool for balancing bilateral cochlear implant systems in slightly<br />
older children is loudness scaling. The scaling method used during fitting<br />
sessions will be very helpful in achieving reliable results. The better the child<br />
is trained to perform the scaling tasks, the more reliable the information used<br />
for balancing will be. Children who have a developmental age of four to five<br />
years will most like be able to identify reliable loudness level with a scale<br />
illustrated by drawings of children reacting to sounds. The drawings depict<br />
children reacting to sound at different loudness levels ranging from “I can’t<br />
hear it” to “too loud.” A picture of the touchscreen used in the University<br />
Clinic in Mainz for scaling loudness levels is presented in Figure 1. Figure 2<br />
shows an example of a scaling profile conducted by a cochlear implant user<br />
for 500, 1000, 2000 and 4000 Hz. The lines through the black dots indicate the<br />
individual loudness progression at a particular frequency, compared to loudness<br />
as evaluated by normal hearing persons.<br />
Description of the Children<br />
The speech discrimination scores reported in this article are based upon<br />
the performance of 41 children with bilateral cochlear implants. All of the<br />
350 Bohnert, Spitzlei, Lippert, & Keilmann
Figure 1. Touchscreen for loudness scaling (Wuerzburger Hoerfeld, WESTRA).<br />
children involved were implanted in two-stage procedures. The preimplant<br />
variables within the group, such as age at first implant, age at second implant<br />
and the time between implants, vary widely. The age of the children at first<br />
implantation ranged from 6 months to 9 years, 1 month (see Table 1). The<br />
second implant was received at ages ranging from 1 year, 2 months to 11<br />
Bilateral Cochlear Implantation in Children 351
Figure 2. Graphic example of a loudness scaling profile for a cochlear implant user.<br />
years, 6 months. Among this group of children, five were bilaterally implanted<br />
before age 2. Twenty-two received the second implant before age 6,<br />
and 14 were bilaterally implanted after age 6. The amount of time between the<br />
first and second implants also varied widely (see Table 2). The shortest period<br />
of time between implant one and implant two was 3 months, whereas the<br />
longest interval was 7 years, 8 months. Among the group, 18 children received<br />
the second implant within two years of the first, whereas 23 children<br />
experienced a period of more than 2 years between the first and second<br />
implant.<br />
The data reported here were collected as part of routine clinical evaluations<br />
and were analyzed retrospectively. It is important to note that the results<br />
were attained in specific test environments and do not necessarily reflect the<br />
children’s skills in “real life” situations.<br />
Audiometric Information<br />
All audiometric tests were conducted within the routine clinical examination<br />
and evaluation of the implant systems, as is the practice at this clinic.<br />
Monaural aided CI thresholds were measured in all children in free sound<br />
field using narrow-band noise. In most cases, aided audiometry was carried<br />
out at 250, 500, 1000, 2000, 4000 and 8000 Hz. Depending upon the child’s<br />
age, tests were conducted via visual reinforcement or play audiometry.<br />
352 Bohnert, Spitzlei, Lippert, & Keilmann
Table 1. Patients<br />
Patient ID<br />
Age at<br />
First Implant<br />
[y;m]<br />
Age at<br />
Second Implant<br />
[y;m]<br />
Time Lag<br />
[y;m]<br />
Current Age<br />
[y;m]<br />
TT 0;06 1;02 0;08 3;02<br />
EF 0;06 1;09 1;03 4;08<br />
WP 0;08 1;04 0;08 3;08<br />
HL 0;09 3;06 2;09 4;11<br />
BL 0;10 1;02 0;04 1;05<br />
SJ 0;10 2;01 1;03 2;07<br />
ED 1;01 3;08 2;07 4;04<br />
JP 1;01 4;06 3;05 4;11<br />
WC 1;01 3;04 2;03 7;08<br />
RM 1;02 1;07 0;05 3;04<br />
NKP 1;02 2;06 1;04 7;10<br />
SN 1;03 3;08 2;05 5;01<br />
KL 1;05 4;03 2;10 7;11<br />
MAA 1;06 3;02 1;08 6;07<br />
HJ 1;07 2;02 0;07 4;01<br />
HM 1;07 2;05 0;10 5;05<br />
KuK 1;08 3;02 1;06 3;09<br />
RS 1;09 4;01 2;04 7;02<br />
KeK 1;10 2;10 1;00 4;11<br />
WA 1;10 7;06 5;08 8;01<br />
RP 2;00 2;10 0;10 6;09<br />
ZR 2;01 2;04 0;03 5;00<br />
EM 2;03 8;04 6;01 8;07<br />
LC 2;03 9;06 7;03 11;05<br />
VHP 2;04 5;09 3;05 9;08<br />
LT 2;04 7;02 4;10 11;06<br />
PR 2;06 3;02 0;08 4;00<br />
HP 2;06 4;11 2;05 7;09<br />
MS 2;08 8;04 5;08 11;07<br />
MJN 2;10 10;04 7;06 12;04<br />
EJL 2;11 5;07 2;08 6;09<br />
UF 2;11 6;04 3;05 12;05<br />
JF 3;00 3;08 0;08 6;03<br />
LDM 3;00 9;03 6;03 12;10<br />
WJ 3;05 8;10 5;05 9;07<br />
OM 3;06 7;03 3;09 8;06<br />
GM 3;10 11;06 7;08 13;07<br />
TJM 4;00 6;00 2;00 7;10<br />
SM 4;01 7;04 3;03 9;09<br />
SS 5;10 9;09 3;11 15;04<br />
LL 9;01 9;09 0;08 14;00<br />
Note. Children are listed in ascending order, based on age at first implantation.<br />
Bilateral Cochlear Implantation in Children 353
Table 2. Patients<br />
Patient ID<br />
Time Lag<br />
[y;m]<br />
Age at<br />
First Implant<br />
[y;m]<br />
Age at<br />
Second Implant<br />
[y;m]<br />
Current Age<br />
[y;m]<br />
ZR 0;03 2;01 2;04 5;00<br />
BL 0;04 0;10 1;02 1;05<br />
RM 0;05 1;02 1;07 3;04<br />
HJ 0;07 1;07 2;02 4;01<br />
TT 0;08 0;06 1;02 3;02<br />
WP 0;08 0;08 1;04 3;08<br />
PR 0;08 2;06 3;02 4;00<br />
JF 0;08 3;00 3;08 6;03<br />
LL 0;08 9;01 9;09 14;00<br />
HM 0;10 1;07 2;05 5;05<br />
RP 0;10 2;00 2;10 6;09<br />
KeK 1;00 1;10 2;10 4;11<br />
EF 1;03 0;06 1;09 4;08<br />
SJ 1;03 0;10 2;01 2;07<br />
NKP 1;04 1;02 2;06 7;10<br />
KuK 1;06 1;08 3;02 3;09<br />
MAA 1;08 1;06 3;02 6;07<br />
TJM 2;00 4;00 6;00 7;10<br />
WC 2;03 1;01 3;04 7;08<br />
RS 2;04 1;09 4;01 7;02<br />
SN 2;05 1;03 3;08 5;01<br />
HP 2;05 2;06 4;11 7;09<br />
ED 2;07 1;01 3;08 4;04<br />
EJL 2;08 2;11 5;07 6;09<br />
HL 2;09 0;09 3;06 4;11<br />
KL 2;10 1;05 4;03 7;11<br />
SM 3;03 4;01 7;04 9;09<br />
JP 3;05 1;01 4;06 4;11<br />
VHP 3;05 2;04 5;09 9;08<br />
UF 3;05 2;11 6;04 12;05<br />
OM 3;09 3;06 7;03 8;06<br />
SS 3;11 5;10 9;09 15;04<br />
LT 4;10 2;04 7;02 11;06<br />
WJ 5;05 3;05 8;10 9;07<br />
WA 5;08 1;10 7;06 8;01<br />
MS 5;08 2;08 8;04 11;07<br />
EM 6;01 2;03 8;04 8;07<br />
LDM 6;03 3;00 9;03 12;10<br />
LC 7;03 2;03 9;06 11;05<br />
MJN 7;06 2;10 10;04 12;04<br />
GM 7;08 3;10 11;06 13;07<br />
Note. Children sorted in ascending order according to time lag between first and second implant.<br />
354 Bohnert, Spitzlei, Lippert, & Keilmann
Figure 3. Averaged aided audiogram of children with a cochlear implant.<br />
The averaged aided audiogram for all ears of all bilaterally implanted<br />
children is shown in Figure 3, with standard deviations. The figure indicates<br />
that variability of detection is nearly equal at each of the different test frequencies.<br />
The mean threshold for all children is in the range of 30 dB HL.<br />
Mean values are also shown for the aided audiograms with the first implant,<br />
(Figure 4, left) and with the second implant (Figure 4, right).<br />
Both averaged audiograms show similar results and correspond with the<br />
mean values for all ears in Figure 3. These results indicate that the children<br />
have similar thresholds. This fact alone, however, does not guarantee similar<br />
speech discrimination abilities, which vary considerably among the children.<br />
Other factors, such as the child’s chronological and developmental ages, the<br />
presence of co-occurring health, learning or cognitive challenges and the time<br />
between first and second implant surgery, also influence performance in<br />
general as well as performance on specific measures.<br />
Figure 4. Averaged aided audiograms of children with first (left) and second<br />
implants (right).<br />
Bilateral Cochlear Implantation in Children 355
Speech Discrimination Tasks<br />
In addition to aided audiograms, some children were able to participate in<br />
speech discrimination testing with their cochlear implants. Speech discrimination<br />
tests were selected according to the child’s age and speech development.<br />
Listed in Table 3 are the speech discrimination tests, with appropriate<br />
age ranges, used at the University Clinic in Mainz. The age ranges listed are<br />
for normal hearing children who are typically developing. All speech discrimination<br />
tests were conducted in open set both in quiet and in noise<br />
conditions. In the quiet condition, the child was seated in front of the speaker<br />
at a distance of 1 meter. Tests were conducted first with the child wearing a<br />
monaural implant and again with input from both implants. It is important to<br />
obtain information about each implant in a monaural listening situation, as<br />
well as information regarding binaural listening performance. Comparison of<br />
these different sets of information can be useful in determining the contribution<br />
of each implant in binaural performance. This can be especially important<br />
information in fitting the second implant to maintain optimal speech<br />
discrimination and compatibility with the first implant.<br />
Children’s Speech Discrimination Performance in Quiet<br />
Speech discrimination in quiet was conducted with open-set materials for<br />
all children. Of the 41 children implanted, 33 were able to participate in<br />
speech discrimination testing. Due to differences in developmental ages<br />
among the children, the number and complexity of the tests completed by<br />
each child varied. Fifteen of the younger children were able to attend to only<br />
one binaurally presented speech discrimination test. Eighteen of the children<br />
were able to respond to speech discrimination testing in both binaural and<br />
monaural modalities. Discrimination scores of speech presented at 65 dB HL<br />
Table 3. Speech Discrimination Tests Used at the University Clinic in Mainz with<br />
Children Who Have Normal Hearing<br />
Test Material Age Ranges<br />
Mainzer I mono- and bisyllabic words 2 years, 6 months to 3 years,<br />
5 months<br />
Mainzer II mono- and bisyllabic words 3 years, 6 months to 4 years,<br />
5 months<br />
Mainzer III mono- and bisyllabic words 4 years, 6 months and older<br />
Göttinger I monosyllabic words 4 years, 6 months to 5 years,<br />
11 months<br />
Göttinger II monosyllabic words 5 years, 11 months and older<br />
Freiburger Zahlen four-syllabic numerals 8 years and older<br />
Freiburger Wörter monosyllabic words 8 years and older<br />
356 Bohnert, Spitzlei, Lippert, & Keilmann
with the first implant (monaural), the second implant (monaural) and with<br />
two implants (binaural) are shown in Figure 5.<br />
Three of the 18 children (SM, WJ and OM) were not able to discriminate<br />
speech with their second implant monaurally because it had just been fitted.<br />
Despite this, two had binaural speech discrimination scores that exceeded<br />
monaural scores with the first implant alone. The third child’s binaural scores<br />
were slightly less than those attained with the first implant.<br />
Seven of the children demonstrated better binaural speech discrimination<br />
than either of their two monaural scores, indicating the presence of binaural<br />
advantage. These children ranged in age from 4 years, 11 months to 12 years,<br />
5 months. The length of time between implant one and implant two ranged<br />
between 8 months and 7 years, 6 months. In nine children, binaural speech<br />
discrimination scores and their better monaural scores were the same. Overall,<br />
their performance ranged between 60% and 100%, and in five of the nine,<br />
performance was at the 90 th percentile or higher. Of the five children who<br />
scored at the 90 th percentile, all had received their first implant by age 2 years,<br />
4 months. Among these children the time between first and second implant<br />
ranged from 10 months to 7 years, 3 months. At the time of testing they had<br />
worn both implants between 3 years, 11 months and 4 years, 4 months.<br />
Two other children attained monaural and binaural scores at the 80 th percentile.<br />
They received their first implant later, between age 2 years, 8 months<br />
and 9 years, 1 month. At the time of testing they had worn bilateral implants<br />
for 3 years, 3 months and 4 years, 3 months, respectively.<br />
Figure 5. Monaural and binaural speech discrimination scores with a cochlear<br />
implant at 65 dB.<br />
Bilateral Cochlear Implantation in Children 357
The last two children with equal monaural (better ear) and binaural scores<br />
had speech discrimination scores of 60% and 70%. Their ages at the first<br />
implant were 1 year, 2 months and 2 years, 10 months. At the time of testing<br />
they had been binaurally fitted for 2 years, 6 months, and 11 years, 4 months.<br />
In two children, binaural speech discrimination scores were worse than in<br />
the monaural condition. One child was initially implanted at age 2 years, 11<br />
months and the other at age 3 years, 5 months. The second implant occurred<br />
at the age of 6 years, 4 months for the first child and 8 years, 10 months for<br />
the second. The monaural versus binaural scores for both children differedby<br />
10%, which equals a difference of one word.<br />
These results indicate that the time between implants does not necessarily<br />
predict binaural performance. It should also be stressed once again that the<br />
fitting of the second implant can initially have a deleterious effect upon<br />
speech discrimination scores. This is more likely to be the case when the time<br />
period between the first and second implant is substantial. The integration of<br />
a new auditory signal is a process that requires adaptation over a period of<br />
time that varies from one individual to another.<br />
Speech Discrimination Performance in Noise<br />
Speech discrimination tests in noise were also carried out in monaural and<br />
binaural conditions. In the test setting, the child was seated in front of the<br />
speaker at a distance of 1 m. The broad-band noise signal was presented by<br />
a speaker placed directly behind the child at a distance of 1 m. Speech was<br />
presented at a level of 65 dB HL, and the noise signal was presented at 60 dB<br />
HL creating a signal-to-noise ratio (SNR) of +5 dB.<br />
Speech discrimination in noise was tested in a total of 24 children. Of this<br />
group, 12 children were tested in both binaural and monaural conditions. Six<br />
other children were tested monaurally in both ears, but not in a bilateral<br />
condition. Six additional children were tested monaurally in one ear only,<br />
because they were unable to concentrate on the test any longer. Test results<br />
for all children are shown in Figure 6.<br />
Nine of the 24 children could discriminate speech better binaurally compared<br />
to the monaural test situation. The age at time of first implant ranged<br />
from 1 year, 1 month to 9 years, 1 month, with a time lag between first and<br />
second implant of between 10 months to 7 years, 6 months. At the time of<br />
testing, they had been implanted binaurally between 2 years and 6 years, 1<br />
month. The improvement between binaural and monaural conditions ranged<br />
from 10% to 40%.<br />
For two children there was no difference between monaural and binaural<br />
test performance. The children were first implanted at ages 2 years, 1 month<br />
and 9 years, 1 month. The first child was bilaterally implanted eight months<br />
later, and the other child received a second implant 2 years, 8 months later.<br />
The binaural performance of one child (WJ) was worse than monaural<br />
358 Bohnert, Spitzlei, Lippert, & Keilmann
Figure 6. Speech discrimination in noise in monaural and binaural conditions.<br />
performance. This particular child was first implanted at the age of 3 years, 5<br />
months and received the second implant 5 years, 5 months later. At the time<br />
of testing, the child had been bilaterally implanted for a period of only nine<br />
months.<br />
Localization<br />
The ability of the children with bilateral implants to localize sound was<br />
tested in a five-speaker arrangement, usually at 60 dB with 1 kHz narrowband<br />
noise. The speaker arrangement is shown in Figure 7. The child was<br />
instructed to point in the direction of the presented sound signal. When the<br />
child pointed correctly, he was reinforced by a light inside the speaker. Localization<br />
was rated only after a child was able to reliably understand the<br />
directions “left” and “right.” To assist the child in learning to localize sound<br />
sources, early interventionists provided special training emphasizing directional<br />
hearing during the fitting and rehabilitation phase. This training was<br />
even more important when the child had not had sufficient hearing to localize<br />
prior to implantation.<br />
Localization Performance<br />
Ten of the 41 children were able to localize sound in a test situation. They<br />
ranged in age from 3 years, 2 months to 12 years, 5 months. All had been<br />
Bilateral Cochlear Implantation in Children 359
Figure 7. Loudspeaker arrangement for testing localization.<br />
bilaterally fitted for a minimum of two years. The children had been bilaterally<br />
implanted for a period of time ranging from 2 years to 6 years, 1 month.<br />
The children received their first implant at ages ranging from 6 months to 4<br />
years, 1 month and the second between 1 year, 2 months and 10 years, 4<br />
months. The length of time between the first and second surgeries varied<br />
from 8 months to 7 years, 6 months. The results indicate that even children<br />
who were implanted at older ages were able to develop sound localization<br />
ability. The children who were able to demonstrate localization in the test<br />
situation had worn two implants between 2 years and 6 years, 1 month. The<br />
parents of those children who had less than one year of unilateral implant<br />
experience reported that they were also able to localize the sources of sounds<br />
in daily life. Among the children who did not demonstrate localization in the<br />
clinical setting, the majority of their parents reported that they were able to<br />
localize the direction of sound sources in daily life.<br />
On the basis of parents’ reports and clinical experiences, localization<br />
abilities typically become more precise over time (Mueller, 2005). Important<br />
factors in localizing environmental sounds and voices, especially in an uncontrolled<br />
acoustic environment are room acoustics and the characteristics of<br />
the sound produced.<br />
Discussion and Summary<br />
It should be reiterated that the results reported here were all obtained as<br />
part of routine clinical evaluations of performance with cochlear implants and<br />
are not research data. The group of children was heterogeneous. Their<br />
chronological and developmental ages varied widely, which affected their<br />
attention spans and motivation to complete a task. Because of the variability<br />
in child characteristics, not all children responded to the same tasks. Thus, the<br />
360 Bohnert, Spitzlei, Lippert, & Keilmann
findings cannot be statistically analyzed but are presented as descriptive<br />
information.<br />
All of the children reported upon here wore bilateral cochlear implants,<br />
and as is typically the case for children with implants, had average aided<br />
thresholds of 30 dB HL across the speech spectrum. Thus, all the children had<br />
aided thresholds allowing them to detect sound in both binaural and monaural<br />
conditions.<br />
Ten of 41 children were able to reliably localize narrow-band noise at least<br />
in terms of “left” and “right.” All of the children who were able to localize<br />
had been bilaterally implanted for a minimum of two years. In a similar<br />
study, Mueller (2005) showed that children implanted bilaterally for 18<br />
months demonstrated localization to a sound source. Because the information<br />
reported here is drawn from clinical records, it is not possible to report the<br />
results of fixed time interval testing.<br />
As reported by Kuehn-Inacker et al. (2004), several children who were able<br />
to respond to both monaural and binaural speech discrimination testing demonstrated<br />
improvement in speech discrimination with two implants compared<br />
to the monaural condition. Performance could not be attributed to the<br />
age at which the child received the initial implant or the second implant, or<br />
the amount of time that had elapsed between the first and second fittings. A<br />
similar lack of correlation between age of implantations or time between the<br />
fittings was reported by Kuehn-Inacker et al. (2004).<br />
Testing of speech discrimination in noise was successfully conducted in 12<br />
of the children. Most of these children showed better performance in binaural<br />
compared to the monaural condition. As in discrimination of speech in quiet,<br />
there was no correlation between scores and the age of the first or the second<br />
implant, or the amount of time that had elapsed between the two implantations.<br />
All of the children accepted the second implant from the time of initial<br />
fitting and have worn both implants consistently. Generally, bilateral fitting<br />
has brought about improved performance in complex listening situations in<br />
all of the children discussed here. This improved performance was not obvious<br />
in all of the test situation results, but parents and children have reported<br />
the benefits of bilateral implantation. These include increased self-esteem and<br />
self-assurance, faster orientation to acoustical changes in the environment,<br />
decreased listening effort, longer attention span, and better concentration.<br />
Parents reported feeling more confident about their children’s safety in situations<br />
such as roads with busy traffic. They also reported that their children<br />
are able to become comfortable more quickly in unfamiliar situations. Parents<br />
and children reported feeling positive about their decision to have a second<br />
implant.<br />
An advantage of bilateral implantation in general is the fact that, in those<br />
cases of technical or mechanical malfunction or defect of one device, the<br />
Bilateral Cochlear Implantation in Children 361
children will retain monaural stimulation. For school-age children, this auditory<br />
input can be critical. In addition, the children have access to auditory<br />
information in their everyday lives (Brill, 2004).<br />
In general, it has been the experience in this clinic that when there is a<br />
shorter time period between the first and second implant fitting, the aural<br />
habilitation therapy can be conducted simultaneously. In this situation there<br />
is less effort for the child to integrate the new sound provided by the second<br />
implant and use both implants comfortably within a shorter period of time.<br />
Not all of the children demonstrated improved bilateral performance in the<br />
test situations. It is important to know, however, that all of the children<br />
accepted the second implant and have worn bilateral fittings constantly. Additionally,<br />
the parents and the children both report decreased listening effort<br />
and improvements in daily life activities with the second implant.<br />
Among all of the children who were bilaterally implanted at an older age,<br />
the timespan between the first and second surgeries was longer than the time<br />
between the first and second implant surgeries of children implanted at a<br />
younger age. They required a longer period of aural habilitation and a longer<br />
time was required to achieve performance comparable to that of the younger<br />
children with bilateral fittings.<br />
The decision to proceed with a second cochlear implant must be made<br />
carefully. It requires close cooperation among the child the family, and professionals<br />
from a variety of disciplines, including pediatric audiologists, early<br />
interventionists, otolaryngologists, speech-language pathologists, teachers<br />
and other specialists. The decision to proceed with bilateral cochlear implantation<br />
must always be made with within the context of each child’s unique<br />
family situation as well as their social, emotional and educational status and<br />
not simply upon improving hearing levels in both ears. Although having two<br />
ears available for listening is beneficial, it will not necessarily solve all of a<br />
child’s problems. In fact, occasionally the expectations placed upon a child<br />
with bilateral implants by parents, teachers and professionals can be overwhelming<br />
to the child. Thus, expectations must be reasonable and realistic.<br />
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2004, Valencia, Spain. Acta Oto-Laryngologica, 125(9), 918-919.<br />
Schleich, P., Nopp, P., & D’Haese, P. (2004). Head shadow, squelch, and<br />
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364 Bohnert, Spitzlei, Lippert, & Keilmann
The Volta Review, Volume <strong>106</strong>(3) (monograph), 365-379<br />
Early Cochlear Implant<br />
Experience and Emotional<br />
Functioning During<br />
Childhood: Loneliness in<br />
Middle and Late Childhood<br />
Efrat A. Schorr, Ph.D.<br />
The importance of early intervention for children with hearing loss has been demonstrated<br />
persuasively in areas including speech perception and production and<br />
spoken language. The present research shows that feelings of loneliness, a significant<br />
emotional outcome, are affected by the age at which children receive intervention with<br />
cochlear implants. Earliest cochlear implantation is associated with lowest levels of<br />
loneliness during middle and late childhood. Compared to children with normal<br />
hearing, children with cochlear implants are not more lonely than their peers with<br />
normal hearing.<br />
Introduction<br />
Awareness of the importance of early intervention for all children with<br />
disabilities has steadily grown in recent decades. Great strides are being made<br />
in the early detection and intervention for infants and children with hearing<br />
loss. In the United States and other countries, the introduction and increased<br />
use of universal newborn hearing screening programs has made it possible to<br />
detect hearing loss in the first days of life. The Joint Committee on Infant<br />
Hearing (2000) has advocated hearing screening for all newborns, with the<br />
goal of confirming hearing loss before 3 months of age and beginning intervention<br />
services before 6 months of age.<br />
The availability of improved technological means to assess hearing in infants<br />
and young children and to habilitate hearing loss with advanced digital<br />
hearing aids and cochlear implants has changed the prospects for many children<br />
with severe and profound hearing loss. Research has shown that infants<br />
Efrat A. Schorr, Ph.D., is a postdoctoral fellow at the Gonda Brain Research Center at Bar Ilan<br />
University, Ramat Gan, Israel.<br />
Loneliness in Children with Cochlear Implants 365
with hearing loss who receive early intervention services before 6 months of<br />
age may display age-appropriate language skills at 5 years (Yoshinaga-Itano,<br />
1995; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998). A growing body of<br />
research literature demonstrates that children with congenital hearing loss<br />
who receive cochlear implants at young ages show improved cognitive<br />
(Sharma, Dorman, & Spahr, 2003), language (Nicholas & Geers, 2006; Tomblin,<br />
Barker, Spencer, Zhang, & Gantz, 2005) and hearing and speech perception<br />
outcomes (Harrison, Gordon, & Mount, 2005; Nikolopoulos, Gibbin, &<br />
Dyar, 2004; Schorr, Fox, vanWassenhove, & Knudsen, 2005; Svirsky, Teoh, &<br />
Neuberger, 2004) compared with children who receive the implants later.<br />
Less is known about the effects of early intervention for children with<br />
hearing loss on social and emotional outcomes. Because more children are<br />
receiving cochlear implants at younger ages, it is imperative that professionals<br />
and researchers from across disciplines work together to learn more about<br />
the effects of early cochlear implantation on the wide range of social and<br />
emotional aspects of child development, such as the development of selfregulation<br />
and self-control, social competence, and peer relationships. Understanding<br />
the social and emotional implications of an early period of<br />
deafness followed by the unique experience of hearing with a cochlear implant<br />
is essential to supporting the development of this growing group of<br />
children. The study presented here is an introductory chapter of the multifaceted<br />
research goals that lie ahead.<br />
Children as young as 5 years demonstrate an understanding of feelings of<br />
loneliness (Cassidy & Asher, 1992). They are able to explain that loneliness<br />
involves both being alone and feeling sad or depressed, a very close definition<br />
to that given by adults (see Peplau & Perlman, 1982, for a general discussion<br />
of loneliness). Research has demonstrated that loneliness in middle childhood<br />
is not a fleeting mood; rather, it is a stable and often long-lasting problem for<br />
children (Hymel & Franke, 1985; Renshaw & Brown, 1993).<br />
Loneliness during childhood develops when children feel that they are not<br />
socially competent and feel rejected by their peers over a relatively long<br />
period of time (Asher & Wheeler, 1985; Renshaw & Brown, 1993). The children<br />
who are most susceptible to feelings of loneliness are those who are<br />
rejected by their peers and are characterized as being socially withdrawn or<br />
inhibited (Cassidy & Asher, 1992; Crick & Ladd, 1993; Parkhurst & Asher,<br />
1992). In addition, children who express feelings of loneliness and social<br />
dissatisfaction in the school setting often have distinct behavioral characteristics.<br />
Young children who reported feeling very lonely at school demonstrated<br />
more aggressive and disruptive behaviors and were viewed as being<br />
less prosocial and shyer than children who did not feel very lonely (Cassidy<br />
& Asher, 1992). Having a close friend, however, has been identified as a<br />
protective factor that buffers children from feeling very lonely even if they are<br />
socially rejected from the peer group (Renshaw & Brown, 1993; Rubin, Coplan,<br />
Nelson, Cheah, & Lagace-Seguin, 1999).<br />
366 Schorr
Hearing loss places children at a specific risk for failure to establish and<br />
maintain positive social relationships with peers (Marschark, 1993). Evidence<br />
suggests that children with hearing loss (without cochlear implants) who are<br />
placed in mainstream schools and classrooms with children with normal<br />
hearing do not form close relationships with their peers (Antia, 1982; Calderon,<br />
2000; Farrigua & Austin, 1980; Greenberg & Kusche, 1989, 1993; Marschark,<br />
1993; Suarez, 2000). For example, Stinson and Lang (1994) described<br />
social outcomes for children with hearing loss (without cochlear implants) in<br />
mainstream school settings, reporting that “the likely consequence of mainstreaming<br />
is social isolation, not integration, and this kind of social experience<br />
is not conducive to the deaf child’s social development” (p. 157). Research on<br />
the social experiences of children with hearing loss (without cochlear implants)<br />
in mainstream educational settings has found that these children feel<br />
isolated and lonely in their school environments (Gaustad & Kluwin, 1992;<br />
Mertens, 1989; Newcomb & Bagwell, 1995; Saur, Popp-Stone, & Hurley-<br />
Lawrence, 1987).<br />
It is important to examine the feelings of loneliness in children with cochlear<br />
implants, especially in light of the possibility that they are often the<br />
only child with hearing loss in their mainstream educational setting (Stinson<br />
& Lang, 1994). Furthermore, critics of cochlear implants have warned about<br />
the potential identity problems facing children with prelingual hearing loss<br />
who receive cochlear implants as young children. They argue that these children<br />
are unable to truly take part in the hearing world and will inevitably be<br />
excluded from full social lives with hearing people (Crouch, 1997; Lane, 1997).<br />
In the present investigation, we sought to assess the feelings of loneliness<br />
in children with cochlear implants. We asked several specific questions about<br />
loneliness. (1) Are children with cochlear implants lonelier than children with<br />
normal hearing? (2) Do early experience-related factors, such as the age at<br />
which hearing loss is confirmed, age at which a child first receives hearing<br />
aids or age at which child receives a cochlear implant, influence loneliness<br />
later on in childhood? (3) Are present-day factors such as speech perception<br />
or language proficiency related to loneliness?<br />
Method<br />
Participants<br />
Thirty-seven children (19 girls and 18 boys) with cochlear implants, ages 5<br />
to 14 (M = 9 years), participated in this study. All of the children were born<br />
deaf, had no additional significant disabilities (e.g., blindness, autism), used<br />
spoken English as their primary mode of communication and their native<br />
language, had nonverbal IQ scores in the average range (a minimum score of<br />
85 on the Matrices subtest of the Kaufman Brief Intelligence Test [K-BIT;<br />
Kaufman & Kaufman, 1990]) and had a general language proficiency level of<br />
Loneliness in Children with Cochlear Implants 367
5 years (i.e., met the age cut-off on both the Peabody Picture Vocabulary<br />
Test-III [PPVT-III; Dunn & Dunn, 1997] and the age-appropriate Grammatic<br />
Understanding subtest of the Test of Language Development-Primary<br />
[TOLD-P; Newcomer & Hammill, 1997], Test of Language Development-<br />
Intermediate [TOLD-I; Hammill & Newcomer, 1997] or Test of Adolescent<br />
and Adult Language-Third Edition [TOAL-3; Hammill, Brown, Larsen, &<br />
Wiederholt, 1994]).<br />
The age at which the children received their cochlear implant ranged from<br />
16 months to 8 years, 3 months, with a mean age at implant of 3 years, 2<br />
months. All children had a minimum of one year of cochlear implant experience<br />
at the time of participation in this study. The duration of cochlear<br />
implant use ranged from 19 months to 10 years, 6 months, with a mean of 5<br />
years, 9 months. The children were from the mid-Atlantic United States.<br />
Parent report indicated that 32 children were educated exclusively in mainstream<br />
or general education classrooms, three were educated in partial mainstream<br />
classrooms and two were educated in self-contained special education<br />
classrooms.<br />
The comparison group consisted of 37 children with normal hearing whose<br />
native language was English. They were matched individually to the children<br />
with cochlear implants by gender and age, within three months of the birth<br />
dates of the children with cochlear implants. All the children with normal<br />
hearing had nonverbal IQ scores in the average range (a minimum score of 85<br />
on the K-BIT Matrices subtest), and no additional disabilities.<br />
Loneliness Assessment<br />
Materials<br />
The Loneliness Scale (Asher & Wheeler, 1985, revised from Asher, Hymel,<br />
& Renshaw, 1984) was used to provide an account of feelings of loneliness.<br />
Responses to this 24-item questionnaire are provided on a five-point Likert<br />
scale. Sixteen items focus on feelings of loneliness and social dissatisfaction in<br />
school, and 8 items are “filler” items. The 16 primary items include four<br />
domains: (1) children’s feelings of loneliness (“I am lonely at school”), (2)<br />
children’s appraisal of their current peer relationships (“I don’t have any<br />
friends in class”), (3) children’s perceptions of the degree to which important<br />
relationship needs are being met (“There are no other kids I can go to when<br />
I need help at school”) and (4) children’s perceptions of their social competence<br />
(“I’m good at working with other children in my class”). Split-half<br />
reliability between forms is 0.83, and Cronbach’s alpha is 0.90 (Asher et al.,<br />
1984; Crick & Ladd, 1993). The participants were asked to respond to each<br />
item on a five-point scale (1 = that’s always true of me, 2 = that’s true about<br />
me most of the time, 3 = that’s sometimes true about me, 4 = that’s hardly ever<br />
true about me and 5 = that’s not true about me at all).<br />
368 Schorr
Nonverbal IQ Assessment<br />
Nonverbal intelligence was assessed with Matrices subtest of the K-<br />
BIT (Kaufman & Kaufman, 1990). All test items contain pictures and abstract<br />
designs and require a pointing response so that cognitive ability can be assessed<br />
independently of oral language proficiency. Cognitive functioning information<br />
was used to ensure that each participant’s nonverbal intelligence<br />
was within normal limits.<br />
Speech Perception Assessment<br />
The participants’ ability to understand spoken language accurately was<br />
assessed with the Lexical Neighborhood Test (LNT) and Multisyllabic Lexical<br />
Neighborhood Test (MLNT) (Kirk, Pisoni, & Osberger, 1995). The LNT and<br />
MLNT measure speech perception through assessment of open-set word recognition.<br />
The LNT contains two 50-item lists of monosyllabic words, and the<br />
MLNT consists of two 24-item lists of two- and three-syllable words. In each<br />
test, half of the words are considered lexically “easy,” meaning that they are<br />
common and have few phonologically similar words. Half are considered<br />
lexically “hard,” meaning that they are words that occur infrequently and<br />
have many phonologically similar words. This pair of tests was designed<br />
specifically for use with children with cochlear implants. Good test-retest<br />
reliability (0.83 for lists one and two, both easy and hard components) and<br />
interlist equivalency have been demonstrated (Kirk, Eisenberg, Martinez, &<br />
Hay-McCutcheon, 1999). Percentage of correct words for the easy and hard<br />
word lists of both the LNT and MLNT were scored, and an average of the four<br />
subtests was calculated.<br />
Language Assessment<br />
General language proficiency was assessed with measures of receptive semantics<br />
and syntax. The PPVT-III (Dunn & Dunn, 1997) was administered to<br />
all participants, and one of three different subtests of receptive syntax performance<br />
was administered to each. For participants ages 5 years to 7 years,<br />
11 months, the Grammatic Understanding subtest of the TOLD-P (Newcomer<br />
& Hammill, 1997) was used. For children ages 8 years to 11 years, 11 months<br />
the Grammatic Understanding subtest of the TOLD-I (Hammill & Newcomer,<br />
1997) was administered. For children ages 12 years to 14 years, 11 months, the<br />
Listening/Grammar subtest of the TOAL-3 (Hammill et al., 1994) was used.<br />
Language proficiency scores were computed with the sum of standard score<br />
obtained on the PPVT and the age-appropriate subtest of syntax.<br />
Procedure<br />
All of the participants took part in a one-day assessment at the Child<br />
Development Lab at the University of Maryland, College Park, or at another<br />
Loneliness in Children with Cochlear Implants 369
location. Informed consent was obtained from the accompanying parent before<br />
beginning testing. The accompanying parent completed a questionnaire,<br />
providing information on the child’s audiological, educational and family<br />
background.<br />
All tests were administered individually to each participant in a quiet<br />
room. The loneliness, IQ, speech perception and language tests were administered<br />
in variable order. The examiner explained to the participant that his or<br />
her answers to all of the questions would remain confidential. All participants<br />
were given a written copy of the Loneliness Scale (Asher & Wheeler, 1985),<br />
and the examiner read each test item aloud, allowing participants time to<br />
respond on paper and ask questions if clarification was necessary. The test<br />
items were read orally to minimize the concern that reading ability might<br />
affect the reliability of the assessments. Scores were summed, with a range of<br />
16 (low loneliness) to 80 (high loneliness).<br />
Results<br />
Description of Feelings of Loneliness of Children with Cochlear Implants<br />
The participants with cochlear implants reported an average score of 32.62<br />
(SD = 10.78) on the Loneliness Scale out of the lowest possible score of 16 to<br />
the highest possible score of 80. This mean loneliness score is comparable to<br />
that of the sample reported in the Asher et al. (1984) original study describing<br />
the Loneliness Scale, which was 32.51 (SD = 11.82). There was considerable<br />
variability in the scores for the participants with cochlear implants, which<br />
ranged from 16 to 60 in the present study.<br />
Loneliness of Children with Cochlear Implants Compared to Children with<br />
Normal Hearing<br />
As a group, the participants with normal hearing reported an average score<br />
of 28.19 on the Loneliness Scale (SD = 8.32). An analysis of variance (ANOVA)<br />
was conducted to determine whether the cochlear implant and normal<br />
hearing groups differed in their reports of loneliness (see Table 1). The<br />
Table 1. Mean Differences in Loneliness by Group for Children with Cochlear<br />
Implants and Children with Normal Hearing<br />
Children With<br />
Cochlear Implants<br />
M (SD)<br />
Children With<br />
Normal Hearing<br />
M (SD) df F<br />
Loneliness average score 32.62 (10.78) 28.19 (8.32) 1,72 3.920<br />
Note. N = 37 for both study groups.<br />
370 Schorr
participants with cochlear implants did not significantly differ from the participants<br />
with normal hearing in their report of feelings of loneliness at school<br />
(p > 0.05).<br />
Effects of Early Experience-Related Variables on Loneliness<br />
Although the participants with cochlear implants did not report feeling<br />
significantly more lonely than the participants with normal hearing, quite a<br />
bit of variability was found in the scores obtained in the study group. Zeroorder<br />
correlations were generated to examine the relationship between loneliness<br />
and early experience-related variables (see Table 2).<br />
A linear regression procedure was used to assess the relationship between<br />
early experience-related variables and mean loneliness scores. Specifically,<br />
we tested whether the age hearing loss was confirmed, age at first amplification<br />
with hearing aids or age at activation of cochlear implant predicted the<br />
loneliness score. We used present chronological age as a covariate in the<br />
regression models to minimize the influence of maturation-related changes<br />
because of the wide age range of participants. The analyses revealed a nonsignificant<br />
relationship between the age hearing loss was confirmed [F(1,31)<br />
= 0.868, p > 0.05, R 2 change = 0.026] and age at first amplification with hearing<br />
aids [F(1,32) = 0.538, p > 0.05, R 2 change = 0.016]. A significant relationship<br />
between age at implant and loneliness score was found [F(1,34) = 4.836, p <<br />
0.05, R 2 change = 0.119), indicating that older age at implant was associated<br />
with higher loneliness scores (ß = 0.450). This model as a whole accounted for<br />
16.6% of the variance in loneliness scores. Figure 1 presents scatter plots of<br />
these relationships.<br />
In addition, we found that the type of amplification used before cochlear<br />
implant surgery was related to loneliness score. Thirty-five of 37 participants<br />
had used hearing aids before their cochlear implant activation (data were not<br />
available for two of the participants). Of those 35, nine also used FM personal<br />
sound systems (see Flexer, 1999, for details on FM technology) with their<br />
hearing aids. An ANOVA indicated that the participants who had used FM<br />
Table 2. Correlations Between Early Experience-Related Variables and Loneliness<br />
1 2 3 4 5<br />
1. Loneliness score — –0.113 –0.084 –0.121 0.403*<br />
2. Age hearing loss confirmed — 0.984** 0.852** 0.379*<br />
3. Age at first amplification — 0.841** 0.379*<br />
4. Age intervention program began — 0.265<br />
5. Age at implantation —<br />
Note. Significant correlations appear in bold type.<br />
*Significant at the 0.05 level.<br />
**Significant at the 0.01 level.<br />
Loneliness in Children with Cochlear Implants 371
Figure 1. Loneliness score and age at implantation, age that hearing loss was<br />
confirmed and age at first use of amplification.<br />
systems were significantly less lonely than participants who had only used<br />
hearing aids [F(1,33) = 6.529, p > 0.05). The participants who had used FM<br />
systems (n = 9) had a mean loneliness score of 26.33 (SD = 5.20), with a<br />
minimum score of 20 and a maximum score of 34. The participants who used<br />
only hearing aids (n = 26) had a mean loneliness score of 35.92 (SD = 10.76),<br />
372 Schorr
with a minimum score of 16 and a maximum score of 60. The hearing aids<br />
group versus hearing aids plus FM group also differed in chronological age<br />
and age at implantation. The participants who had used FM systems were<br />
younger (91 versus 116 months of age at testing) and received their cochlear<br />
implant at a younger age (23 versus 45 months). We interpret these results<br />
with caution because of the unequal size of the groups (n = 26 versus n=9),<br />
but they can provide some guidance for best practices for intervention with<br />
children with cochlear implants.<br />
Relationship Between Present-Day Factors and Loneliness<br />
Regression models showed a relationship between the age at which participants<br />
received their cochlear implant and their loneliness score. We<br />
wanted to examine whether speech perception or spoken language skills<br />
served as the mediator for this association. In other words, we asked whether<br />
early age of implantation leads to better speech perception and spoken language<br />
skills, which, in turn, affect loneliness; i.e., the better one can communicate,<br />
the less lonely one might feel. In this scenario, loneliness is affected<br />
only indirectly by early experience variability in age of implantation because<br />
speech perception or language skills are the factors that truly influence loneliness.<br />
Zero-order correlations were computed to examine the relationships between<br />
loneliness and speech perception and language skills (see Table 3).<br />
Speech perception and language skills were closely related to each other, but<br />
neither of these variables corresponded to the mean loneliness score in a<br />
significant way. Regression models using chronological age and speech perception<br />
and chronological age and language skills as covariates were computed.<br />
In the two models, neither speech perception [F(1,33) = 1.548, p > 0.05,<br />
R 2 change = 0.043] nor language skills [F(1,34) = 0.495, p > 0.05, R 2 change =<br />
0.014] accounted for the variability in the loneliness scores.<br />
Because of the null findings in these regression analyses, a post-hoc power<br />
Table 3. Correlations Between Speech Perception and Language Skills<br />
and Loneliness<br />
1 2 3 4<br />
1. Loneliness score — –0.<strong>106</strong> –0.203 0.403*<br />
2. Speech perception score — 0.703** 0.126<br />
3. Composite language score — –0.056<br />
4. Age at implantation —<br />
Note. Significant correlations appear in bold type.<br />
*Significant at the 0.05 level.<br />
**Significant at the 0.01 level.<br />
Loneliness in Children with Cochlear Implants 373
analysis was conducted to determine whether there was sufficient power in<br />
the research design to permit detection of a true effect. For the regression<br />
analysis involving speech perception as the dependent variable, the observed<br />
power value of 0.35 was indicated (confidence intervals of 95% for B = –0.133<br />
to 0.551). For the regression analysis involving language skill as the dependent<br />
variable, the observed power was 0.24 (confidence intervals of 95% for<br />
B=–0.256 to 0.124). Both of these effect sizes are relatively small, indicating<br />
that the failure to find significant effects of the speech and language variables<br />
on the loneliness measure could be the result of insufficient sample size rather<br />
than the weak connection between these variables. Nonetheless, our findings<br />
indicate that in this sample, speech perception and language skills are not the<br />
factors that influence loneliness. Rather, there appears to be a direct link<br />
between age of implantation and feelings of loneliness in middle and late<br />
childhood that is present regardless of speech perception and language skills.<br />
Discussion<br />
The purpose of this study was to assess the feelings of loneliness of children<br />
with cochlear implants and to try to place this investigation within the<br />
broader context of loneliness among a normative sample of children with<br />
normal hearing. As well, we wanted to investigate the influence of factors that<br />
are unique to children with cochlear implants on loneliness. The participants<br />
with cochlear implants reported feelings of loneliness at school that were<br />
relatively low. These children appear to perceive a sense of support and feel<br />
included in their school settings. These findings are in contrast with the<br />
reports of social exclusion in school from children with hearing loss without<br />
cochlear implants (i.e., Stinson & Lang, 1994). Several potentially significant<br />
differences were found between the experiences of the present sample of<br />
children with cochlear implants and those without cochlear implants reported<br />
previously in the literature. First, children with cochlear implants in<br />
the present study all used spoken language fluently, which allowed them to<br />
participate in their classrooms without the need for a sign language interpreter.<br />
This ability also allowed them to spend most, if not all, of their time<br />
in the inclusive classroom as opposed to being a “visitor” who came and went<br />
from the classroom frequently. These factors could permit the child to become<br />
a true “member” of the classroom social group, despite his or her hearing loss<br />
(see Antia, Stinson, & Gaustad, 2002, for a discussion of “membership” and<br />
“visitorship” for students with hearing loss in inclusive education).<br />
The participants with cochlear implants reported feelings of loneliness<br />
that were very similar to the participants with normal hearing. This result<br />
seems to run counter to the arguments of cochlear implant opponents who<br />
felt that children with cochlear implants would inevitably feel excluded from<br />
the hearing social world around them. It may be helpful for parents and<br />
professionals to know that children with cochlear implants are not necessarily<br />
374 Schorr
lonelier than their peers with normal hearing. Indeed, we found significant<br />
variability in the feelings of loneliness of the participants with cochlear implants—some<br />
reported feeling quite lonely at school—but the results overall<br />
show that being a child with hearing loss with a cochlear implant in a mainstream<br />
school does not necessarily mean they will be lonely.<br />
There appears to be a strong connection between the age at which a child<br />
receives a cochlear implant and feelings of loneliness at school years later.<br />
Also, it seems that while the development of speech and language skills is<br />
essential to social functioning, it alone does not determine whether a child<br />
will feel lonely in school. Rather, one reasonable interpretation of the results<br />
is that the opportunity for children with congenital hearing loss to truly<br />
participate in their family and school environments begins when they receive<br />
their cochlear implants. Thus, perhaps the participants who received their<br />
implants at the youngest age developed feelings of belonging and inclusionin<br />
their school settings in a similar manner as the participants with normal<br />
hearing. Although they may catch up impressively in their speech and language<br />
skills, children who received their cochlear implants at older ages may<br />
take longer to attain a feeling of belonging or may have difficulty feeling that<br />
they belong at all.<br />
The curious results of the relationship of FM system use to loneliness,<br />
despite the nonsignificant relationships between other early amplification<br />
factors, may be understood in the following manner. It seems that, auditory<br />
experience before cochlear implantation per se does not have the same effect<br />
on feelings of loneliness as it does after the cochlear implant. Auditory experience<br />
prior to implantation may not play a significant or obvious role in<br />
later emotional outcomes because children with profound to severe hearing<br />
loss may derive very little benefit from the hearing aids used prior to implantation.<br />
However, FM system use may have an important influence on the<br />
attitudes of parents, teachers and other significant adults. Perhaps using an<br />
FM system encourages parents and teachers to talk to the child with hearing<br />
loss, to include the child in the conversation, and to think of him or her as a<br />
part of the goings on in a way that they quite naturally might not if the FM<br />
system were not in use. Thus, the use of an FM system with hearing aids<br />
before early cochlear implantation represents the “best practice” to prepare<br />
children with hearing loss to tune in to the conversations taking place in their<br />
environment and be primed to pay attention. If understood in this light, the<br />
finding that early FM system use is associated with feelings of loneliness in<br />
school later on in childhood is understandable.<br />
The results of the present study imply that the advantages of early cochlear<br />
implantation extend to the domain of emotional functioning. They seem to<br />
indicate that although cochlear implants provide the potential to acquire<br />
good speech and language skills; this is not all they do. Arguably, they provide<br />
the potential for children to develop healthy emotional perspectives of<br />
themselves and their place in the world around them. Once the children<br />
Loneliness in Children with Cochlear Implants 375
eceive cochlear implants, significant others may feel that they are real communication<br />
partners, and importantly, the children begin to view themselves<br />
as capable communication partners.<br />
“Best practice” is an important idea to consider for children with hearing<br />
loss. Although early identification of hearing loss and early amplification<br />
with hearing aids did not predict feelings of loneliness outcomes, early cochlear<br />
implantation did. However, they are essentially related because early<br />
cochlear implantation is only a possibility for children if hearing loss is detected<br />
and the intervention process is begun early. In light of the reality of the<br />
cochlear implant candidacy process and the often cumbersome journey leading<br />
up to cochlear implant surgery, early cochlear implantation only is possible<br />
when hearing loss is detected at birth or soon afterward. Based on the<br />
results of the present study, the provision of cochlear implants to appropriate<br />
candidates as early as suitable should be considered the best practice for<br />
children with severe to profound hearing loss. As well, the results of this<br />
study imply that we should not discount the importance of amplification with<br />
appropriate hearing aids and FM systems before the implant surgery because<br />
their use may be important for reasons that extend beyond the raw numbers<br />
of decibel gain with the devices. Rather, hearing aids and FM systems may<br />
influence the important adults (as well as the child him or herself) to consider<br />
the child with hearing loss as a listener.<br />
Finally, some of the participants with cochlear implants reported feeling<br />
quite lonely in their classrooms. It is important to have this information<br />
because strategies can be sought to help these children feel less lonely in<br />
school. Although it would not be a simple proposition to intervene and ameliorate<br />
feelings of loneliness, awareness of the problem is a necessary first step<br />
in that direction (see Margalit, 1996, for a discussion of intervention strategies<br />
for loneliness in children with disabilities).<br />
This study contributes insights into the exploration of the emotional and<br />
social impact of cochlear implant use on the lives of children. Further research<br />
is needed to learn whether loneliness is related to other emotional or social<br />
issues for children with cochlear implants. More information also is needed to<br />
gain a better understanding of many other emotional aspects of development<br />
that may be affected by hearing loss and the use of a cochlear implant.<br />
Longitudinal research would provide a more comprehensive portrait of emotional<br />
development in children with cochlear implants. We hope this study<br />
will raise awareness of the importance of emotional issues in development<br />
and that more research will follow.<br />
In conclusion, the study reported here emphasizes the importance of early<br />
detection and intervention for children with hearing loss as essential to<br />
speech and language development. Early intervention also has important<br />
effects on feelings of loneliness in these children. The trends in the United<br />
States and other countries toward earlier detection and intervention for children<br />
with hearing loss are encouraging, and it is crucial to raise awareness so<br />
376 Schorr
that all children can benefit from the earliest detection and appropriate intervention<br />
for hearing loss.<br />
Acknowledgments<br />
This research was supported by the American Hearing Research Foundation<br />
and a National Research Service Award grant (F31 DC006204-01A1) to<br />
E.A.S. from the National Institutes of Deafness and Other Communication<br />
Disorders, National Institutes of Health. The author would like to thank the<br />
children and parents who participated in the study. Sincere appreciation and<br />
thanks go to Nathan A. Fox and Froma P. Roth at the University of Maryland<br />
for their guidance and support for this project.<br />
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Loneliness in Children with Cochlear Implants 379
The Volta Review, Volume <strong>106</strong>(3) (monograph), 381-418<br />
Early Hearing Detection and<br />
Intervention in Developing<br />
Countries: Current Status<br />
and Prospects<br />
Bolajoko O. Olusanya, M.D., M.Phil.<br />
Infant hearing screening is emerging rapidly as a silent global revolution for the<br />
early detection of children with congenital or early onset hearing loss to ensure timely<br />
enrollment in family-oriented intervention programs for the development of spoken<br />
language. This article examines the overriding and interrelated scientific, ethical and<br />
economic considerations for early hearing detection and intervention (EHDI) in<br />
developing countries against the backdrop of relevant resolutions of the World Health<br />
Assembly (WHA) and current global programs on early childhood developmentofthe<br />
World Bank, United Nations Children’s Funds (UNICEF) and the United Nations<br />
Educational, Scientific and Cultural Organization (UNESCO). The need to determine<br />
and develop culturally appropriate EHDI programs is indicated by the significant<br />
proportions of births that occur outside regular hospitals in some countries based<br />
on lessons from ongoing projects. The key challenges and possible approaches to<br />
building local service capacities to advance this vital, social, educational and public<br />
health initiative also are highlighted.<br />
Introduction<br />
Hearing screening for babies dates back to 1944 when Sir Alexander and<br />
Lady Ethel Constance Ewing of Great Britain demonstrated the need to develop<br />
methods of testing hearing in young children in the first year of life<br />
(Ewing & Ewing, 1944). The Ewings were among the earliest to investigate<br />
infant behavioral responses to auditory stimuli using sounds from toys,<br />
Bolajoko Olusanya, M.D., M.Phil., is a research fellow at the Institute of Child Health and the<br />
Great Ormond Street Hospital for Children NHS Trust, University College London; a fellow<br />
of the Royal College of Pediatrics and Child Health, United Kingdom; and an international<br />
fellow of the American Academy of Pediatrics. She has successfully pioneered hospital and<br />
community-based infant hearing screening programs in Nigeria in collaboration with the<br />
country’s federal health department.<br />
EHDI in Developing Countries 381
noisemakers, crumpled paper and the human voice. Further interest in neonatal<br />
and infant hearing screening by various researchers subsequently culminated<br />
in the formation of the U.S. Joint Committee on Infant Hearing<br />
(JCIH) in 1969 to improve and coordinate efforts for the early detection of<br />
congenital hearing loss.<br />
As a result of the limitations of available behavioral screening techniques,<br />
the JCIH recommended in 1972 the screening of only high-risk babies based<br />
on a set of five risk factors, which were expanded to 10 in 1994 (American<br />
Academy of Pediatrics, 1995). However, selective screening based on risk<br />
factors was found to miss a significant number of infants with hearing loss<br />
(Mauk, White, Mortensen, & Behrens, 1991; Watkin, Baldwin, & McEnery,<br />
1991). After much debate (Bess & Paradise, 1994), universal newborn hearing<br />
screening (UNHS) emerged as the preferred method of early hearing detection<br />
and subsequently as a standard of care in the United States and many<br />
developed countries (Bamford, Uus, & Davis, 2005; JCIH, 2000; Lutman &<br />
Grandori, 1999; Russ et al., 2002; Weichbold, Nekahm-Heis, & Welzl-Mueller,<br />
2006; White, 2003). This practice has facilitated a growing enrollment of children<br />
detected with significant hearing loss (averaging 30 to 40 dB or more<br />
over frequencies 500 to 4000 Hz) into family-oriented intervention services in<br />
the first year of life (Harrison & Roush, 2003; JCIH, 2000; Uus & Bamford,<br />
2006; Weichbold et al., 2006). Much of the current success is attributable to<br />
significant advancements in screening technologies and hearing devices as<br />
well as to improved research to establish the efficacy of early intervention on<br />
the communication skills and quality of life of infants with hearing loss.<br />
In a recent report, Morton and Nance (2006) rightly acknowledged that<br />
newborn hearing screening is a silent revolution and that “better hearing for<br />
all nations is an achievable, important goal” (p. 2152). However, current<br />
dispositions toward the globalization of EHDI are varied and seem to range<br />
from cautious optimism to enthusiastic support (Mencher & Devoe, 2001;<br />
White, 2006; Grandori & Hayes, 2006). Reticence towards EHDI initiatives is<br />
commonly linked to the prevailing socioeconomic challenges and the burden<br />
of fatal childhood diseases. This tends to distract attention from the vast<br />
majority of survivors in this region who need to thrive and develop optimally<br />
in their early crucial years. Children with disabilities are the most vulnerable<br />
and those with hidden disabilities like permanent hearing loss are easily the<br />
most neglected and the most disadvantaged (Olusanya, Ruben, & Parving,<br />
2006b).<br />
Another major obstacle to supporting EHDI efforts in developing countries<br />
is the lack of representative data reflecting the peculiarities and the great<br />
diversities within and across the more than 140 countries in this region<br />
(United Nations Children’s Funds [UNICEF], 2005; World Bank, 2006). Although<br />
pilot studies are ongoing in a growing number of countries, progress<br />
towards early hearing detection and intervention (EHDI) is still quite limited<br />
and underreported. Against this backdrop, this review presents the rationale<br />
382 Olusanya
for promoting EHDI in developing countries, highlights the current global<br />
impetus for EHDI, examines current options and progress towards early<br />
hearing detection and concludes with a discussion of the scope, status and<br />
prospects of intervention services.<br />
Rationale for EHDI in Developing Countries<br />
The decision to screen for hearing loss in early childhood in any community<br />
must be based on rational and universally accepted criteria for screening<br />
in order to justify its introduction as an essential public health service. The<br />
major scientific, ethical and economic considerations relevant to screening for<br />
infant hearing loss in developing countries are examined in this section.<br />
Scientific Considerations<br />
A population-based screening may be defined as “the systematic application<br />
of a test or inquiry to identify individuals at sufficient risk of a disorder<br />
that would benefit from further investigation or direct preventive action<br />
among people who have not sought medical attention or intervention because<br />
of symptoms of that disorder” (Wald, 2006 [p. 53]; Strong, Wald, Miller, &<br />
Alwan, 2005 [p. 12]). It entails the early detection of a disorder that is known<br />
to cause significant morbidity, suffering, disability or death if detected at a<br />
later stage and for which early intervention is possible and efficacious.<br />
At least five principles should be satisfied before any screening program is<br />
implemented (American Academy of Pediatrics [AAP], 1999; Bess & Paradise,<br />
1994; National Screening Committee (UK), 2003; Olusanya, Luxon, & Wirz,<br />
2005a; Screening Brief, 2001; Strong et al., 2005):<br />
1. The condition or disorder must be a significant health problem in the<br />
target population.<br />
2. Evidence must exist that the condition cannot be prevented effectively<br />
from occurring (i.e. not fully amenable to primary prevention).<br />
3. The screening procedure or test must be simple, safe and valid.<br />
4. The treatment or intervention must be effective and available.<br />
5. The benefits from the screening program must outweigh the associated<br />
risks.<br />
Significance of PECHL in Developing Countries<br />
As noted aptly by Mencher (2000), a major challenge in many developing<br />
countries is the dearth of epidemiological data on permanent congenital and<br />
early onset hearing loss (PCEHL). Paradoxically, such data can only be obtained<br />
reliably when infant hearing screening is implemented. Prevalence<br />
estimates for PCEHL before the widespread implementation of UNHS ranged<br />
EHDI in Developing Countries 383
from 1.5 to 6 per 1,000 live births (Bachmann & Arvedson, 1998; Barsky-<br />
Firkser & Sun, 1997; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998). Basedon<br />
the outcomes of several large-scale UNHS programs in developed countries,<br />
the incidence of bilateral PCEHL (>40 dB HL) is estimated as 2 to 4 per 1,000<br />
live births (Smith, Bale, & White, 2005; White, 2004). If the poorer health and<br />
socioeconomic conditions in developing countries and the significant proportion<br />
of births occurring outside hospitals were considered, the incidence of<br />
PCEHL (>40 dB HL) in many developing countries likely would rise to at<br />
least 6 per 1,000 live births (Olusanya et al., 2006b). For instance, Ansari (2004)<br />
reported a survey conducted in India in which 4 of every 1,000 children born<br />
in that country were identified with severe-to-profound hearing loss. When<br />
moderate-to-severe hearing loss was included, the report suggested an even<br />
higher incidence of hearing loss. These data, therefore, would suggest that of<br />
the 119.7 million annual live births in developing countries (UNICEF, 2005),<br />
about 718,000 are likely to have PCEHL (Olusanya & Newton, in press).<br />
In addition, the World Health Organization (WHO) latest estimates show a<br />
more than two-fold increase within a decade in the population of persons<br />
with significant hearing loss (>40 dB HL) worldwide from 120 million in 1995<br />
to at least 278 million in 2005 (WHO, 2006a).<br />
Two-thirds of the world’s population of children and adults with hearing<br />
loss live in developing countries. Hearing loss in 68 million people is estimated<br />
to have existed since childhood, but this estimate may be understated<br />
because several risk factors for PCEHL, including those listed by the JCIH, are<br />
associated with poor maternal and child health care in developing countries.<br />
PCEHL is also the most common communication disorder that prompts consultation<br />
with physicians (Somefun, Lesi, Danfulani, & Olusanya, 2006).<br />
Based on these facts, PCEHL is unlikely to be a less significant psychosocial,<br />
educational and health condition in developing countries than in developed<br />
countries where UNHS currently is mandatory.<br />
Limitations of Primary Prevention of PCEHL<br />
It has been suggested that at least 50% of the burden of hearing loss across<br />
all age groups can be prevented (Alberti, 1996; Smith, 2003; WHO, 2006a).<br />
Prevention in a generic sense consists of three levels of disease control and<br />
management: primary, secondary and tertiary (see Table 1).<br />
Primary prevention for PCEHL is concerned with the prevention of its<br />
occurrence or any condition that may lead to its occurrence and includes such<br />
activities as immunization, avoidance or rational use of ototoxic drugs and<br />
improved obstetric care, personal hygiene and living conditions. For primary<br />
prevention to be effective, there must be accurate knowledge of the causes<br />
and associated risk factors for PCEHL in a given setting (Morzaria, Westerberg,<br />
& Kozak, 2004). Available studies suggest that the possible causes of<br />
PCEHL in a significant proportion (about 20-57%) of children with hearing<br />
384 Olusanya
Table 1. Levels of Prevention for Congenital and Early Onset Hearing Loss<br />
Level of Prevention Description<br />
Primary<br />
Aim: To prevent<br />
occurrence of PCEHL or<br />
any condition that may<br />
lead to its occurrence<br />
Secondary<br />
Aim: To detect and treat<br />
early or modify the effects<br />
of PCEHL where there is<br />
no treatment.<br />
Tertiary<br />
Aim: To provide an entry<br />
point for the care and<br />
management of the child<br />
with PCEHL.<br />
● Vaccination against rubella, mumps and meningitis<br />
(hemophilus influenzae type B and meningococcus)<br />
● Avoidance and cautious use of ototoxic drugs<br />
● Widespread public education to prevent neonatal<br />
jaundice from<br />
• Iso-immunization<br />
• Exposure of infants who may be G6PD deficient to<br />
hemolytic agents, such as camphor and<br />
menthol-containing household substances<br />
• Umbilical sepsis<br />
● Prenatal diagnosis and termination of pregnancy for<br />
significant congenital abnormalities<br />
● Premarital counseling on the dangers of<br />
consanguinity for genetic diseases in general and<br />
specifically for hearing loss<br />
● Improved maternal and child health services<br />
including prompt decision-making process for<br />
cesarean section when indicated<br />
● Management of maternal HIV infection for the<br />
prevention of vertical transmission through<br />
• Use of antiretroviral drugs (HAART) during<br />
pregnancy<br />
• Delivery by cesarean section<br />
• Avoidance of breast feeding<br />
● Malaria control and prophylaxis<br />
● Parental empowerment through education and<br />
gainful employment<br />
● Early detection through newborn hearing screening<br />
and enrollment in early intervention programs<br />
● Widespread awareness of language milestones and<br />
risk factors for hearing loss during ante-natal classes<br />
for pregnant women and postnatal classes and<br />
immunization clinics for new mothers<br />
● Preschool screening programs to identify children<br />
missed by infant hearing screening<br />
● Technology for auditory-based communication for<br />
mainstreaming<br />
• Provision of hearing aids and support services<br />
• Provision of cochlear implants<br />
● Teachers equipped through education and training<br />
to provide effective classroom auditory-based<br />
communication support for children with mild to<br />
moderate hearing loss<br />
● Classroom accommodations (e.g., preferential seating,<br />
acoustic treatment of classrooms, sound field systems)<br />
● Consideration of alternate visual communication<br />
options (e.g., Cued Speech, Sign Language)<br />
EHDI in Developing Countries 385
loss in the developing world are unknown, thus forestalling primary prevention<br />
as a comprehensive solution (Derekoy, 2000; Elango, Chand, & Purohit,<br />
1992; Gray, 1989; Holborow, Martinson, & Anger, 1982; Minja, 1998; Sellars &<br />
Brighton, 1983). Moreover, vaccinations against notable causes of PCEHL,<br />
such as meningitis, mumps and rubella, are rare in many developing countries<br />
(WHO, 2002). The standard of maternal and child health care in many of<br />
these countries is poor and unlikely to reach levels comparable to those of<br />
developed countries in the foreseeable future (UNICEF, 2005).<br />
Secondary prevention, therefore, is imperative in view of the possibilities<br />
offered by newborn or infant screening for early detection and intervention.<br />
Secondary prevention for prelingual hearing loss involves taking action to<br />
prevent PCEHL from becoming a disability through early hearing detection<br />
followed up with appropriate and timely intervention. Infant hearing screening,<br />
therefore, is essentially a preventive and vital social, educational and<br />
health care service. Regardless of the limitations with primary prevention,<br />
however, screening is not an alternative “primary prevention” strategy but a<br />
complement to ongoing efforts to prevent and curtail known risk factors for<br />
PCEHL (Alberti, 1996; Kumar, 1997; WHO, 2006).<br />
Tertiary prevention is concerned with the rehabilitation of persons with<br />
disabilities. Tertiary prevention for PCEHL, therefore, seeks to prevent the<br />
disability posed by restricted hearing sensitivity from becoming a “handicap”<br />
or disability that hinders an individual’s daily functioning and participation<br />
in society at large (Stephens, 1996; WHO, 2001). It embraces the provision of<br />
hearing aids or cochlear implants and associated services, family-oriented<br />
support services, special education and equitable social integration.<br />
Efficiency of Screening Methods<br />
Currently, parental suspicion or concern prompted by a child’s inappropriate<br />
or lack of response to sound is the most common mode of detecting<br />
PCEHL in many developing countries. Parental suspicion often provides<br />
valuable impetus for detection and a prescreening method; however, health<br />
professionals do not always act upon parents’ observations (Glascoe, Maclean,<br />
& Stone, 1991; Roberts, 1996). Moreover, this passive form of detection<br />
often occurs well after the child is 24 months old, which is late for optimal<br />
intervention for speech and language development (Gopal, Hugo, & Louw,<br />
2001; Mukari, Vandort, Ahmad, Saim, & Mohamed, 1999; Olusanya, Luxon, &<br />
Wirz, 2005b). Parental suspicion may be earlier for children with severe-toprofound<br />
hearing loss, but confirmation often is not obtained until the child<br />
is 5 years of age. The delay sometimes is attributable to health professionals<br />
not responding to parental concern (Prendergast, Lartz, & Fiedler, 2002). In<br />
China, the use of a five-item questionnaire was explored as a screening technique<br />
among parents of 6- to 8-month-old infants, and it had varying degrees<br />
of success (Newton, Liu, Ke, Xu, & Bamford, 1999). Though simple and inexpensive<br />
to administer, the questionnaire was unreliable in detecting slight<br />
386 Olusanya
or unilateral hearing loss because it relied solely on parental observation. The<br />
effects of these types of hearing losses may be subtle enough that parents are<br />
not alerted easily to their presence. The use of risk factors to identify children<br />
with hearing loss has been attempted in some countries (Ali, Khan, Baloch, &<br />
Aziz, 2004; D’Mello, 1995; Maisoun & Zakzouk, 2003), but up to 50% of<br />
children with hearing loss were undetected by this method, and the presence<br />
of some risk factors was difficult to elicit reliably. Thus, sole reliance on<br />
parental observation or high-risk screening is inefficient and not advisable.<br />
An ideal screening test should be simple to apply, safe and valid. The test<br />
is valid if it is highly sensitive (i.e., it detects the majority of babies with<br />
hearing loss) and highly specific (i.e., it excludes most babies without hearing<br />
loss). Otoacoustic Emissions (OAE) and Automated Auditory Brainstem Response<br />
(AABR) are the only two objective tests currently that satisfy these<br />
criteria with documented sensitivity and specificity in excess of 90%, especially<br />
when combined into a two-stage screening protocol (Davis et al., 1997;<br />
Hall, Smith, & Popelka, 2004; Kennedy, Kimm, Thornton, & Davis, 2000; Mehl<br />
& Thomson, 2002; Vohr et al., 2001a). They are used presently, in various pilot<br />
newborn hearing screening programs in developing countries (Attias et al.,<br />
2006; Bener, ElHakeem, & Abdulhadi, 2005; Chapchap & Segre, 2001; Habib<br />
& Abdelgaffar, 2005; Khandekar, Khabori, Mohammed, & Gupta, 2006; Lin,<br />
Huang, Lin, Lin, & Wu, 2004; Low, Pang, & Ho, 2005; Mathur & Dhawan,<br />
2006; Mukari, Tan, & Abdullah, 2006; Ng, Hui, Lam, Goh, & Yeung, 2004;<br />
Olusanya & Okolo, 2006a; Quintos, Isleta, Chiong, & Abes, 2003; Swanepoel,<br />
Hugo, & Louw, 2006; Yee-Arellano, Leal-Garza, & Pauli-Muller, 2006). There<br />
is no reason to expect that these tests will be unacceptable among mothers in<br />
any infant hearing program because they are noninvasive, painless and quick<br />
to administer. In the absence of objective screening measures, the age of<br />
detection of PCEHL will remain unacceptably high (Canale et al., 2006; Gopal<br />
et al., 2001; Harrison, Roush, & Wallace, 2003; Parving, 1999; Yoshinaga-Itano,<br />
2004).<br />
Treatment for PCEHL<br />
The value of early detection is optimized if effective intervention exists and<br />
is accessible to children identified with PCEHL. The time from birth to about<br />
5 years of age is a critical or sensitive phase for the acquisition of speech and<br />
language skills (Carney & Moeller, 1998), but optimal outcomes are best<br />
achieved in the first year of life (Kennedy et al., 2006; Moeller, 2000; Yoshinaga-Itano<br />
et al., 1998). The provision of amplification also is essential for<br />
children with PCEHL in the developing world; however, amplification devices<br />
are seldom prescribed for children earlier than 2 years of age because of<br />
late detection of PCEHL and because infants often are considered too young<br />
to be fitted with these devices even when parents can afford to purchase<br />
them. For these reasons, enrollment in schools for children with hearing loss<br />
EHDI in Developing Countries 387
still constitutes the predominant intervention option for parents. Often, such<br />
enrollment is delayed until age 10 because of late diagnosis and parental<br />
preference for auditory-based intervention, which physicians rarely offer<br />
(Olusanya et al., 2005b). Even when enrollment into schools for children with<br />
hearing loss occurs at much earlier ages, reading and comprehension abilities<br />
are about 50-60% of the children’s chronological age by the time they leave<br />
school, which is typically at age 18. A survey among hearing parents in<br />
Nigeria indicated that they, like parents in other countries, want their children<br />
with hearing loss to be aided promptly so they can acquire spoken<br />
language–feelings similar to parents in other countries (Luterman & Kurtzer-<br />
White, 1999; Olusanya et al., 2005b; Russ et al., 2004; Young & Tattersall,<br />
2007).<br />
Recognizing the constraints of many developing countries to provide relevant<br />
intervention services due to knowledge gap and scarcity, the WHO has<br />
published guidelines for manufacturing affordable hearing aids, delivery of<br />
audiological services and personnel training to encourage auditory-based<br />
intervention services (Kumar, 2001; WHO, 2004). In addition, low-cost and<br />
solar-powered hearing aids currently are being manufactured in developing<br />
countries to encourage wider use (Parving & Christensen, 2004). It is not<br />
unusual for appropriate early intervention services to be in short supply in<br />
developed countries, a situation that relevant professional associations and<br />
stakeholders in those countries seek to address (JCIH, 2000; Uus, Bamford,<br />
Young, & McCracken, 2005). Anecdotal evidence suggests that as infant hearing<br />
screening programs become established and the health care system increasingly<br />
tasked by unmet patients’ demands, further public and/or private<br />
sector initiatives will emerge towards the development of relevant services to<br />
satisfy growing needs.<br />
Benefits Versus Risks of Screening<br />
Apart from the specific benefits already documented for developed countries,<br />
infant hearing screening programs empower parents to make informed<br />
and timely choices that offer their children the best start in life (Glover, 2003;<br />
Russ et al., 2004; Young & Tattersall, 2007). Additional benefits as they relate<br />
to developing countries have been discussed in greater detail elsewhere (Olusanya,<br />
Luxon, & Wirz, 2004). From a societal standpoint, UNHS has been<br />
associated with significant cost savings in health expenditures in developed<br />
countries (Schroeder et al., 2006), and this also is likely to be applicable to<br />
developing countries.<br />
The emotional/psychological effects of false-positives are the principal adverse<br />
consequences thought to be associated with UNHS (Hewlett & Waisbren,<br />
2006; Vohr, Letourneau, & McDermott, 2001; Watkin, Baldwin, Dixon,<br />
& Beckman, 1998). However, many surveys of parents have shown that only<br />
a few have anxiety about infant hearing screening and that anxiety levels<br />
388 Olusanya
were usually higher when babies were scheduled for rescreening (Vohr et al.,<br />
2001b; Weichbold & Welzl-Mueller, 2001). In fact, maternal anxiety following<br />
positive screening outcomes can be moderated markedly by effective communication<br />
to parents that a referral for subsequent screening test(s) is not by<br />
itself a confirmation of hearing loss (Crockett, Wright, Uus, Bamford, & Marteau,<br />
2006; Hewlett & Waisbren, 2006; Stuart, Moretz, & Yang, 2000).<br />
Maternal anxiety and stress are equally associated with true-positives, but<br />
these effects may not necessarily be considered as adverse consequences of<br />
screening because they are inevitable even without screening. False-negative<br />
screening results give false assurance to parents and health professionals and<br />
delay diagnosis. Similarly, infant hearing screening could miss some children<br />
with PCEHL that is progressive or is delayed-onset, giving parents a false<br />
sense of assurance.<br />
The paucity of high-quality, randomized controlled studies on the benefits<br />
and the potential psychological effects of UNHS remains a continuing global<br />
challenge (Thompson et al., 2001), but as demonstrated in the many countries<br />
where UNHS is offered routinely, the majority of parents feel the benefits of<br />
early detection and intervention through infant hearing screening far outweigh<br />
these potential adverse outcomes (Clemens, Davis, & Bailey, 2000;<br />
Davis et al., 1997; Hergils & Hergils, 2000; Luterman & Kurtzer-White, 1999;<br />
Stuart, Moretz & Yang, 2000; Weichbold & Welzl-Mueller, 2001).<br />
Moreover, the value of knowing about a “hidden” disability that, inevitably,<br />
will become apparent at a later stage when the prospects for optimal or<br />
effective intervention have diminished significantly is unquantifiable, especially<br />
for parents in some traditional communities who would otherwise seek<br />
unorthodox and sometimes potentially harmful treatments for the symptoms<br />
of hearing loss (Andrade & Ross, 2005; Odebiyi & Togonu-Bickersteth, 1987).<br />
In fact, parents often are angry and distraught when health care workers<br />
delay providing vital information on their child’s health status (Glover, 2003;<br />
Magnuson & Hergils, 2000; Russ et al., 2004). Thus, available scientific evidence<br />
clearly demonstrates that screening infants for PCEHL is most likely to<br />
be a worthwhile public health care service for developing countries.<br />
Ethical Considerations<br />
Universal screening is usually offered to people who have not sought medical<br />
attention on account of the symptoms of a disorder. When a condition is<br />
“hidden” or “invisible” and has no major adverse and visible consequences,<br />
it may be difficult to justify the need for screening, especially when intervention<br />
services for those with the condition are limited. However, the adverse<br />
effects of PCEHL are inevitable and likely to become apparent at a time when<br />
intervention is, at the very best, suboptimal. Therefore, it can be argued that<br />
it is unethical to withhold screening for a condition that will manifest itself<br />
eventually with adverse consequences, regardless of the availability of services<br />
to deal adequately with the problem. Nonetheless, screening for such a<br />
EHDI in Developing Countries 389
condition must still satisfy the basic ethical principles of autonomy (the right<br />
to choose), non-maleficence (obligation to avoid causing harm), beneficence<br />
(obligation to provide benefits and to balance benefits against risks) and<br />
justice (obligation of fairness in the distribution of benefits and risks) (Olusanya,<br />
Luxon, & Wirz, 2006a).<br />
Parental Autonomy<br />
Parents must be educated sufficiently on the benefits and potential adverse<br />
effects of the screening process, and their consent must be obtained before<br />
conducting the screening. Every pregnant mother expects to give birth to a<br />
healthy baby and leave the birthing center with the assurance that her apparently<br />
well child has every chance to thrive and develop optimally. Parental<br />
consent for screening, therefore, can be obtained readily if it is presented<br />
as a routine neonatal examination that is painless, noninvasive and can be<br />
quickly administered prior to hospital discharge.<br />
The health professional must handle the screening process with sensitivity<br />
because the arrival of a newborn is both a joyous and an emotion-laden event<br />
for the parents and the entire family. Parental reaction to the disclosure of<br />
PCEHL is likely to be one of shock, denial, grief, anger and depression (Hedderly,<br />
Baird, & McConachie, 2003; Kurtzer-White & Luterman, 2003) and may<br />
be compounded by unfavorable or superstitious beliefs toward congenital<br />
disabilities in some traditional communities, which could undermine the effectiveness<br />
of the intervention process (Byford & Veenstra, 2004; Kiyanga &<br />
Moores, 2003; Stephens, Stephens, & Eisenhart-Rothe, 2000). The most opportune<br />
time to begin discussing the importance of screening with parents, therefore,<br />
is probably during maternal and child health clinics, particularly before<br />
delivery (Arnold et al., 2006).<br />
Benefits Versus Harms of Screening<br />
Balancing the benefits of screening against its potential adverse effects is<br />
also an ethical issue because of the inherent limitations of a screening test. The<br />
risks of false assurance that a child has no hearing loss or of unnecessary<br />
anxiety for a child falsely detected with hearing loss as previously mentioned<br />
must not be ignored. The latter is of greater concern for service providers<br />
because it places unnecessary burden on the limited resources. Practical ways<br />
of minimizing these risks include delaying screening beyond 48 hours after<br />
birth to eliminate the effect of vernix plugs, conducting a two-stage screening<br />
with OAE and ABR and minimizing the effect of ambient noise during<br />
screening, which could be a daunting challenge for hospitals located in noisy<br />
environments (Hall, Smith, & Popelka, 2004; Headley, Campbell, & Gravel,<br />
2000; Jacobson & Jacobson, 1994; Kennedy et al., 2000; Maxon, White, Culpepper,<br />
& Vohr, 1997). From an ethical standpoint, these potential adverse<br />
390 Olusanya
Table 2. World Bank Classification of Countries by Income Levels*<br />
Income Group (GNI<br />
Per Capita)<br />
effects or challenges are insignificant when compared with the many benefits<br />
of infant hearing screening in developing countries (Olusanya et al., 2006a).<br />
Distributive Justice<br />
Number of<br />
Countries Partial Listing of Countries<br />
Low income (US$10,725)<br />
Ghana<br />
54 Brazil, Cuba, Indonesia,<br />
Philippines, Syria,<br />
Jordan, Thailand, China<br />
33 Argentina, Botswana,<br />
South Africa, Mexico,<br />
Malaysia<br />
15 Brunei, Pueto Rico, Saudi<br />
Arabia, Kuwait, Qatar,<br />
United Kingdom,<br />
United States<br />
Note. GNI, gross national income. *The World Bank (2006).<br />
Degree of Need for<br />
External Support<br />
Substantial<br />
Some<br />
Minimal<br />
None<br />
The requirement for distributive justice in the use of scarce resources is a<br />
significant consideration for many low- and middle-income countries but is<br />
less so for high-income countries in the developing world (see Table 2). A<br />
simple generalization of the individual capacities of developing countries to<br />
afford EHDI services is fundamentally inappropriate. Some developing countries<br />
in the middle- or high-income group are in a position to implement a<br />
publicly funded EHDI comparable to or approximating the standards of programs<br />
in developed countries. Distributive justice requires the identification<br />
and recognition of best practices in public health care to guide health professionals,<br />
regardless of the economic status of each country. Distributive justice<br />
also requires equity of access to essential health care, especially among the<br />
potential beneficiaries (Landman & Henley, 1999). On a global level, distributive<br />
justice would suggest that EHDI be implemented in developing countries,<br />
which account for 90% of children with PCEHL, especially because<br />
EHDI programs have been considered vital in the developed world, which<br />
accounts for only 10% of children with PCEHL.<br />
Against this backdrop, the implementation of EHDI in developing countries<br />
is ethically justified to warrant the systematic and widespread introduction<br />
and development of relevant services.<br />
EHDI in Developing Countries 391
Figure 1. How health expenditures are financed globally.<br />
Economic Considerations<br />
A major reservation regarding the introduction of EHDI relates to whether<br />
governments in developing countries can afford these services as part of basic<br />
public health care. This concern often emanates from the perspective in developed<br />
countries in which EHDI services are publicly funded and offered at<br />
minimal or no charge to consumers. There are striking disparities in global<br />
spending patterns for health care services between low/middle-income and<br />
high-income countries that should not be overlooked, as shown in Table 2<br />
and Figure 1 (Gottret & Schieber, 2006). For instance, the public share of total<br />
health expenditures ranges from 65% in high-income countries to 29% in<br />
low-income countries, with private expenditure accounting for the balance. A<br />
common and significant feature in developing countries is that user fees are<br />
charged for most services (including medications) at all levels of health care<br />
delivery. Although such fees are associated more with private providers of<br />
health services, they are not uncommon among public health institutions in<br />
many countries. As a result, out-of-pocket spending in low-income countries<br />
accounts for 66% of total health expenditure (or about 93% of private expenditure)<br />
compared with 20% of total health expenditure (or about 56% of<br />
private expenditure) in high-income countries (see Figure 1). Foreign loans<br />
and grants from multilateral institutions like the World Bank and charitable<br />
contributions from various donor agencies often augment government spending,<br />
but altogether these external sources rarely account for more than 10% of<br />
392 Olusanya
total public expenditure (Gottret & Schieber, 2006). The implication of this<br />
spending pattern is that the introduction of any public health intervention<br />
cannot be solely predicated on the capacity of the government to provide<br />
needed services.<br />
In any country, PCEHL exists among children in all socioeconomic classes.<br />
Just as income varies widely among nations so, too, do individual capacities<br />
within and across communities. Even in low-income countries, there will<br />
always be some individuals who can afford the services for themselves and/<br />
or to help others. In many communities, therefore, the disposable income<br />
available to individuals is the sum of their own resources plus those that may<br />
become available to them from other benevolent individuals who are moved<br />
by the special health needs of others. Besides, the manner in which individuals<br />
choose to prioritize their spending often is unpredictable and complex. For<br />
instance, some communities may consider socially stigmatized diseases more<br />
important and well-deserving of communal support than nonstigmatized<br />
diseases, even if they are less prevalent (Kapiriri & Norheim, 2002), and are<br />
likely to place higher premium on the needs of children than those of adults<br />
(Landman & Henley, 1999).<br />
Given the financial constraints faced by most governments, it is, perhaps,<br />
more plausible for governments to facilitate public-private partnerships for<br />
pilot studies, create public awareness, and set standards for best practices.<br />
Public-private partnerships for EHDI are likely to be more successful if they<br />
are preceded by the inclusion of goals for early childhood development in<br />
general, and early hearing detection in particular, in the national health policy<br />
(The Government of Brazil, 2006; Federal Republic of Nigeria, 2005; Nascimento<br />
et al., 2006; Olusanya et al., 2005a). Governments also can play an<br />
essential role in ensuring that training curricula for health professionals provide<br />
updated skills for the broad spectrum of prevailing health care needs<br />
and are not just limited to fatal childhood diseases. As countries contemplate<br />
national or community-based health insurance schemes (Gottret & Schieber,<br />
2006), it should be possible also to explore the inclusion of EHDI services in<br />
a few countries such as Brazil and South Africa (Swanepoel, 2006).<br />
Current Global Impetus for EHDI<br />
It is very common for governments in developing countries to tailor their<br />
national health programs to the policies and priorities of major multilateral<br />
agencies of the United Nations such as WHO, UNICEF, the World Bank and<br />
the United Nations Educational, Scientific and Cultural Organization<br />
(UNESCO). In addition, many governments depend on expert advice and<br />
technical inputs from these organizations in constructing their national health<br />
and educational policies. This practice often assures the inflow of external<br />
financing for national programs. For these reasons, it is essential to establish<br />
a link for EHDI within the current global agendas of these institutions.<br />
EHDI in Developing Countries 393
The World Health Assembly (WHA), which is comprised of the health<br />
ministers of United Nations member states, is responsible for setting the<br />
policies of the WHO to reflect the health care preferences of its members. In<br />
1995, the WHA passed a resolution regarding the prevention and control of<br />
major causes of avoidable hearing loss and the “early detection in babies,<br />
toddlers, and children, as well as in the elderly, within the framework of<br />
primary health care” (WHO, 1995 [p. 1]). This resolution was passed within<br />
the context of the WHO’s definition of health, which seeks to promote physical,<br />
mental and social well-being and not merely amelioration of disease. The<br />
resolution addressed the growing problem of disabling (>40 dB HL) hearing<br />
loss and its adverse consequences for language acquisition, optimal childhood<br />
development and educational achievement. Among other issues, the<br />
resolution recognized the need for early hearing detection but did not recommend<br />
how to achieve this goal. This omission was not unexpected, considering<br />
the keen debate in the United States that was occurring around this<br />
period on the most appropriate and effective strategy for EHDI (Bess &<br />
Paradise, 1994). The resolution also outlined specific roles for United Nations<br />
member states and the WHO while encouraging public-private partnerships<br />
to address this problem.<br />
In 2005, a decade after another resolution relevant to the management of<br />
hearing loss was passed by the WHA on disability management and rehabilitation<br />
(WHO, 2005). Similarly, this resolution urged collaborative action<br />
by the WHO and United Nations member states to reduce risk factors contributing<br />
to disabilities during pregnancy and childhood. The resolution also<br />
encouraged the early identification and intervention for disabilities, especially<br />
during pregnancy and childhood, including family counseling, access<br />
to appropriate assistive technology and community-based rehabilitation programs.<br />
UNICEF is the United Nations’ agency responsible for the well-being of the<br />
world’s children. One of its five cardinal priorities is the promotion of optimal<br />
early childhood development because the organization believes that giving a<br />
child the best start in life lays the foundation for learning and school achievement.<br />
The organization has recently expressed interest for the needs of children<br />
who have been “excluded and made invisible” by hearing loss and other<br />
disabilities and should therefore be supportive of national efforts to help<br />
these children in their early crucial years for optimal development such as<br />
early hearing detection and intervention (UNICEF, 2005).<br />
UNESCO provides for an Early Childhood Care and Education (ECCE)<br />
initiative under its Education For All (EFA) program launched and adopted<br />
by 164 countries in 2000 (UNESCO, 2006). The ECCE is aimed at supporting<br />
children’s survival, growth, development and learning from birth to entry<br />
into primary school, especially for the most vulnerable and disadvantaged<br />
children. It recognizes that early childhood is a time of remarkable brain<br />
development that lays the foundation for later learning. It also asserts that it<br />
394 Olusanya
is more cost effective to institute preventive measures and support for children<br />
early on than to compensate for the disadvantage as they grow older<br />
(UNESCO, 2006). EHDI is therefore consistent with the ECCE priority.<br />
In addition, the ongoing United Nations’ millennium development project,<br />
based on a collective declaration by 189 member countries in 2000, constitutes<br />
the global agenda for the mobilization and prioritization of resources to the<br />
developing world till year 2015 (United Nations, 2005). The first two of eight<br />
millennium development goals (MDGs) are focused on the eradication of<br />
extreme poverty and the completion of full course of primary education by<br />
children everywhere. It has been demonstrated that failure to detect and<br />
manage PCEHL through UNHS in developing countries will significantly<br />
undermine the realization of these two goals (Olusanya et al., 2006a).<br />
These major global initiatives provide valuable platforms and impetus for<br />
the promotion of EHDI in the developing world. Failure to extend UNHS to<br />
developing countries in particular may undermine optimal early childhood<br />
development and exacerbate the already vast health inequality between developed<br />
and developing nations. In fact, it is now widely acknowledged<br />
(inclusive of the World Bank) that an investment in early childhood, which<br />
embraces EHDI, offers significant long-term returns for national development<br />
(Young, 2007). These considerations have also prompted recent efforts to<br />
redress the exclusion of childhood hearing loss and adult hearing loss of<br />
childhood onset in the current global disease control priorities of the World<br />
Bank for developing countries (Jamison et al., 2006; Olusanya & Newton, in<br />
press).<br />
Options for Early Hearing Detection in<br />
Developing Countries<br />
Current pilot infant hearing screening programs in developing countries<br />
are either hospital- or community based. The rationale behind each model,<br />
protocols for implementing screening, possible challenges and highlights<br />
from current programs in developing countries are examined in this section.<br />
Rationale<br />
Hospital-Based Screening<br />
Screening babies in hospitals before discharge is desirable for at least two<br />
primary reasons. First, screening eliminates the need to ask mothers to return<br />
specifically to have their babies tested. Parents are likely to be less enthusiastic<br />
to seek detection of an invisible and non-life-threatening handicap in<br />
their apparently normal babies. Taking an apparently well child to the hospital<br />
for any “check-up” is viewed as socially and culturally inappropriate in<br />
many communities because of the notion that hospitals are established only<br />
to serve the sick. Second, screening helps health care professionals to satisfy<br />
EHDI in Developing Countries 395
an important ethical obligation of ensuring that babies have been examined<br />
and tested for hidden, detectable abnormalities before discharge.<br />
Screening Protocols<br />
A common protocol is a two-stage screening, first with Transient-Evoked<br />
Otoacoustic Emissions (TEOAE) followed by AABR for children referred<br />
from the first-stage (i.e., TEOAE) screen. This protocol often is associated with<br />
minimal false-positive rates (specificity >90%) without significant reduction<br />
in sensitivity (Hall et al., 2004; Kennedy et al., 2000). Most screening instruments<br />
are simple to use, allowing a person without prior audiological expertise<br />
to conduct the screening after a brief period of training.<br />
Although nurses are skilled in securing informed parental consent before<br />
screening and may be members of the screening team for this purpose, adding<br />
this responsibility to the nurses’ workload could be counterproductive. In<br />
many settings, nurses are likely to view this task as being less important than<br />
other routine clinical duties. Where mothers are commonly to be discharged<br />
within 48 hours, screening often is recommended as close to discharge as<br />
possible to minimize false referral due to vernix plugs in the baby’s ears.<br />
Possible Challenges<br />
Given the low prevalence rates for congenital hearing loss, the majority of<br />
babies are expected to pass the first-stage screen. Finding a suitable section<br />
within the hospital ward is necessary to minimize false referral rates where<br />
the ambient noise levels are excessive. This could a major challenge for hospitals<br />
with severe space constraints. When the number of babies awaiting<br />
screening is large, some mothers may be too impatient to wait and may never<br />
return. In addition, babies who are unsettled because their mothers have not<br />
established lactation would be difficult to test within the short time available<br />
for screening in “baby-friendly hospitals,” where exclusive breast feeding is<br />
promoted routinely.<br />
Moreover, as shown in Figure 2 (UNICEF, 2005; WHO, 2006b) a significant<br />
proportion of births occur outside regular hospitals in many developing<br />
countries. For instance, in South Asia the proportion of births with skilled<br />
attendants (a proxy for hospital deliveries) varies from as low as 13% in<br />
Bangladesh to 43% in India (compared with about 99% in developed countries).<br />
Consequently, many babies in these regions will be missed by hospitalbased<br />
UNHS programs. The obvious challenge then is to locate where the<br />
majority of babies are born within these communities and establish effective<br />
ways of attracting parents for hearing screening services.<br />
Progress Reports from Current Projects<br />
Hospital-based UNHS pilot projects have been implemented in Nigeria,<br />
South Africa, India, Pakistan, Saudi Arabia, Iran, Qatar, Jordan, Oman, China,<br />
Hong Kong, Taiwan, Malaysia, Philippines, Singapore, Brazil and Mexico<br />
396 Olusanya
Figure 2. Proportion of births in hospital facilities (1996-2004). Based on data from<br />
UNICEF (2005) and WHO (2006b).<br />
(see Table 3). One of the oldest projects was started in a private hospital in<br />
Brazil in 1988 and has expanded to more than 230 sites nationwide (Chapchap<br />
& Segre, 2001). It is possibly one of the most organized and successful UNHS<br />
programs at present in the developing world.<br />
Based on available reports, the number of babies screened has varied from<br />
406 in the Philippines to 36,095 in four hospitals in Singapore. The duration<br />
of the reported data ranges from five months in Nigeria, South Africa and<br />
Hong Kong to 60 months in China. It is pertinent to mention that these pilot<br />
programs still are ongoing in most (if not all) of these countries.<br />
Reports from these countries confirm that hospital-based UNHS is feasible.<br />
The attitudes of parents and health care professionals generally were favorable;<br />
however, some challenges remain unresolved. For instance, high default<br />
rates for follow-up services are common and require effective data management<br />
and tracking systems. Most programs were initiated and entirely managed<br />
by health professionals in hospitals with little or no government<br />
funding. Some have been made possible through equipment donations or<br />
loans from manufacturers, supplemented by financial support from local<br />
non-governmental organizations. Most of these countries have no free national<br />
health care service or publicly administered health insurance schemes;<br />
thus, only parents who can afford to pay seek these services. In the Nigerian<br />
project parents currently are not required to pay for services, including hearing<br />
aids. In other countries, parents pay for hearing aids if required, sometimes<br />
at highly subsidized rates. Data on screening costs per baby still are<br />
EHDI in Developing Countries 397
Table 3. Pilot Programs on Infant Hearing Screening in Developing Countries<br />
Country (Reference) Year Started (Location) Setting/ Coverage Protocol Total Screened (Duration)<br />
398 Olusanya<br />
Nigeria (Olusanya & Okolo, 2006) 2005 (Lagos) Hospital, MCC: UNHS OAE, AABR 1,132** (5 months)<br />
South Africa (Swanepoel et al., 2006) 2003 (Pretoria) Hospital, MCC: UNHS OAE 510* (5 months)<br />
India (http://healthlibrary.com) 2003 (Kochi) Hospital: TNHS OAE 2,500* (N/A)<br />
Pakistan (Ali et al., 2000) 1999 (Lahore) Hospital: UNHS OAE 756* (N/A)<br />
Saudi Arabia (Habib & Abdelgaffar, 1996 (Jeddah) Hospital: UNHS OAE 11,986*(96 months)<br />
2005)<br />
Iran (Grandori & Hayes, 2006; Masoud 2002 (Tehran, Mashad) Hospital: UNHS OAE 16,000+** (6 months)<br />
et al., 2006)<br />
Qatar (Bener et al., 2005) 2003 (Doha) Hospital: UNHS OAE 2,800* (11 months)<br />
Jordan (Attias et al., 2006) 2001 (multiple cities) Hospital, MCC: UNHS OAE 8,251** (N/A)<br />
Oman (Khandekar et al., 2006) 2003 (multiple cities) Hospital, MCC: UNHS OAE, AABR 21,387** (12 months)<br />
China (Grandori & Hayes, 2006; Xu 2000 (Nanjing) Hospital: UNHS OAE, AABR 8,800* (60 months)<br />
et al., 2006)<br />
Hong Kong (Ng et al., 2004) 1998 (Hong Kong) Hospital: UNHS OAE, AABR 1,064* (5 months)<br />
Taiwan (Lin et al., 2002) 1998 (Taipei) Hospital: UNHS OAE, AABR 6,765* (24 months)<br />
Malaysia (Mukari et al., 2006) 2000 (Kuala Lumpur) Hospital: UNHS OAE 4,437* (11 months)<br />
Philippines (Quintos et al., 2003) 2000 (Manila) Hospital: UNHS OAE 406* (12 months)<br />
Singapore (Low et al., 2005) 2002 (Singapore) Hospital: UNHS OAE, AABR 36,095** (24 months)<br />
Brazil (Chapchap & Segre, 2001) 1996 (Sao Paulo) Hospital: UNHS OAE 4,196* (36 months)<br />
Mexico (Yee-Arellano et al., 2006) 2005 (Mexico City) Hospital: TNHS, UNHS OAE, AABR 3,066* (24 months)<br />
Note. Abbreviations: MCC, maternal and child health clinic; UNHS, universal newborn hearing screening; OAE, Otoacoustic Emissions; AABR,<br />
automated Auditory Brainstem Response; TNHS, targeted newborn hearing screening; N/A, not available.<br />
*Screening results from one site only.<br />
**Screening results from more than one site.
scant, although they are likely to vary from country to country, depending on<br />
the screening protocol adopted. Generally, screening instruments and associated<br />
consumables remain expensive, but the costs could be reduced significantly<br />
through bulk purchasing among many screening sites. Future product<br />
development by manufacturers may eliminate or minimize expensive consumables,<br />
and donors may be able to provide screening instruments at a<br />
reduced cost. Shortages of relevant manpower and facilities for diagnostic<br />
evaluation as well as poor public awareness also have been cited in some<br />
countries. These issues can be addressed through systematic and ongoing<br />
human capacity building and parent and health professional education. Hospital-based<br />
UNHS programs should be effective in detecting the majority of<br />
babies with congenital hearing loss, as in Latin American countries where a<br />
significant proportion of births occur in hospitals (UNICEF, 2005) (see Figure<br />
2). However, a complementary program would be required in communities<br />
with low rates of hospital-based deliveries.<br />
Community-Based Screening<br />
Rationale<br />
In many developing countries, home births and deliveries at private maternity<br />
homes run by birth attendants account for the majority of babies born<br />
outside of hospitals (WHO, 2006b). The rest are delivered in health facilities<br />
within church premises or before arrival at hospitals. Contemplating newborn<br />
hearing screening programs at these various locations is a logistical<br />
challenge; however, the experiences in most of these countries show that<br />
mothers from all birthing locations take their babies to immunization clinics<br />
at designated community health centers. Routine childhood immunization is<br />
perhaps the most well-established public health program globally due to the<br />
substantial technical and financial support received yearly from UNICEF, the<br />
WHO and several donor agencies and partners. Its popularity is derived from<br />
its preventive value for most fatal childhood diseases and because it is offered<br />
free to parents. Consequently, immunization clinics have been used as platforms<br />
for delivering new child health intervention packages, especially in the<br />
developing world (WHO, 2002). They provide a ready framework for introducing<br />
infant hearing screening (Olusanya et al., 2004). Community-based<br />
screening, however, is not limited to immunization clinics and may be implemented<br />
during infant welfare clinics (Bantock & Croxson, 1998; Kapil, 2002;<br />
Lin et al., 2004; McPherson, Kei, Smyth, Latham, & Loscher, 1998). In addition,<br />
community-based screening can be considered as a complement where<br />
there is a high rate of babies missed due to early discharge or the inability of<br />
the screening personnel to cope with the high birth rates in some public<br />
hospitals in heavily populated areas (Mathur & Dhawan, 2006). Conducting<br />
screening in infants’ homes, as has been reported in some developed<br />
countries, is not a practicable option in developing countries because of the<br />
EHDI in Developing Countries 399
Table 4. Typical National Immunization Schedule for Infants in Developing<br />
Countries<br />
enormous logistical challenges associated with this strategy (Oudesluys-<br />
Murphy & Harlaar, 1997; Owen, Webb, & Evans, 2001).<br />
Service Delivery<br />
Reports from the developed world suggest that favorable outcomes still<br />
may be achieved if hearing loss is detected within the first year of life<br />
(Kennedy et al., 2006; Moeller, 2000). A typical national immunization schedule<br />
for developing countries offers a number of options within the first year<br />
of life for infant hearing screening (see Table 4). Bacille Calmette-Guérin<br />
(BCG) immunization often records the highest uptake of all the vaccinations<br />
administered in the first year in many developing countries (UNICEF, 2005).<br />
However, the age at which babies are presented for various immunizations<br />
varies widely within and across communities. For instance, the age at presentation<br />
for BCG immunization in Nigeria typically ranges from 1 to 136<br />
days (75 th percentile, 24 days; 95 th percentile, 61 days) (Olusanya & Okolo,<br />
2006a). A similar variation has been reported in South Africa for the first<br />
diphtheria-pertussis-tetanus (DPT) immunization at 6 weeks (Swanepoel et<br />
al., 2006). This variation in age and timing has the advantage of facilitating<br />
early detection for a significant number of infants with progressive or delayed-onset<br />
congenital hearing loss and those from acquired causes that<br />
would have been missed under hospital-based UNHS. These categories of<br />
hearing loss commonly are associated with prevailing adverse perinatal conditions<br />
in many developing countries (Olusanya & Okolo, 2006b). In addition,<br />
this platform provides the chance to screen sick babies (now recovered) who<br />
could not be tested or immunized during admission.<br />
Possible Challenges<br />
Recommended Age<br />
Vaccine Birth 6 Weeks 10 Weeks 14 Weeks 9 Months<br />
Bacille Calmette-Guérin (BCG) x<br />
Oral polio* x x x x<br />
Diphtheria-pertussis-tetanus (DPT) x x x<br />
Hepatitis B* x x x<br />
Haemophilus influenzae type b* x x x<br />
Yellow fever* x<br />
Measles x<br />
Note. From World Health Organization (2002).<br />
*Not provided in or applicable to all countries.<br />
Difficulties may arise when routine immunization programs are interrupted<br />
because of vaccine shortages or other extraneous reasons. For instance,<br />
400 Olusanya
a widely reported controversy concerning polio vaccination in some Nigerian<br />
states would have disrupted any adjunct programs, including infant hearing<br />
screening (Fleck, 2004; Mitka, 2004; Renne, 2006). Despite the possibility of<br />
program disruptions, the experiences in many countries strongly suggest that<br />
routine immunization programs are still the most effective platform for integrated<br />
child health intervention globally. Another major challenge arises<br />
when screening cannot be completed and babies require follow-up visits in<br />
addition to scheduled immunization clinics. It may be useful in this situation<br />
to ascertain likely difficulties the affected parents may encounter in keeping<br />
follow-up appointments and then to offer appropriate support, such as compensation<br />
or reimbursement for transportation fares. Moreover, a registry of<br />
babies with incomplete screening tests may be maintained at subsequent<br />
immunization clinics for tracking purposes.<br />
Progress Reports from Current Projects<br />
Preliminary results from two pilot programs in South Africa and Nigeria<br />
confirm that infant hearing screening at immunization clinics is feasible and<br />
worthwhile in developing countries, although more reports are needed from<br />
other regions because screening protocols may differ from country to country<br />
(see Table 3). For instance, the screening program in South Africa used a<br />
protocol consisting of a first-stage distortion product OAE and a highfrequency<br />
probe tone (1 kHz) tympanometry for infants ages birth to 12<br />
months. A planned second-stage screen with AABR was discontinued because<br />
of practical difficulties with administering the test (Swanepoel et al.,<br />
2006). Rather, the first-stage protocol was repeated for subsequent stages.<br />
Only 40% of those scheduled for the second-stage screen returned, possibly<br />
due to the timing of follow-up visits outside a routine immunization schedule.<br />
In contrast, a two-stage protocol with an initial TEOAE screen at BCG<br />
immunization clinics was used in the program in Nigeria. Those referred<br />
from the first-stage screen were scheduled for a second-stage screen with<br />
AABR within a week. The uptake for the second-stage screen improved from<br />
50% at the initial stages of the program to 75% subsequently. Babies older<br />
than 3 months often were difficult to test with this screening protocol; thus,<br />
it was necessary to exclude them from the two-stage screening, which reduced<br />
coverage to 83% of babies attending the BCG clinics. Although the<br />
default rates from South Africa and some other developing countries are<br />
high, they are comparable to reported rates in the early stages of most UNHS<br />
programs in the developed world (Korres, Balatsouras, Nikolopoulos, Korres,<br />
& Ferekidis, 2006; Mehl & Thomson, 2002). Effective data management and a<br />
comprehensive tracking system are vital to minimizing avoidable loss to<br />
follow-up.<br />
Additional details on the progress towards early hearing detection in developing<br />
countries based on a collaborative, transnational survey have been<br />
described elsewhere (Olusanya et al., 2007).<br />
EHDI in Developing Countries 401
Scope and Status of Intervention<br />
Perhaps the foremost benefit of infant hearing screening is the timely<br />
knowledge it provides for parents who otherwise may experience a wide<br />
range of emotions and seek ineffective solutions as they begin to suspect their<br />
children’s atypical response or lack of response to sound. This is quite typical<br />
in many communities in developing countries where superstitious beliefs and<br />
recourse to unorthodox practices are prevalent (Andrade & Ross, 2005; Byford<br />
& Veenstra, 2004; Kiyanga & Moores, 2003; Odebiyi & Togonu-<br />
Bickersteth, 1987; Stephens et al., 2000). Children with PCEHL are capable of<br />
learning and acquiring spoken language like their peers with normal hearing.<br />
Current technological advances not only facilitate prompt and accurate detection,<br />
but also offer children with PCEHL the opportunity to develop spoken<br />
language. Because the majority of parents use spoken language and lack<br />
interest in any other form of communication, there are major incentives for<br />
parents to seek appropriate help for their children as early as possible when<br />
the most benefit can be provided. Evidence on the status of intervention<br />
services following early hearing detection is scanty because such services are<br />
offered predominantly by private providers who often are reluctant to provide<br />
information on their services for research purposes (Madriz, 2000; Russo,<br />
2000). The target of intervention services is not necessarily to provide the<br />
entire range of options currently offered in developed countries (Gabbard &<br />
Schryer, 2003; Gravel & O’Gara, 2003) but to focus on functionality, affordability<br />
and what is culturally appropriate within an ethical framework (Flett<br />
& Stoffell, 2003). For instance, in Brazil, improved interactions between children<br />
with hearing loss and their families were reported following a specialized<br />
speech and hearing intervention program comprising speech therapy,<br />
sign language and oral language workshops for the children; sign language<br />
workshops for hearing parents; and a parent support group (Grandori &<br />
Hayes, 2006). In addition, the use and effectiveness of “experience books” in<br />
monitoring progress of infants enrolled in early intervention programs from<br />
babbling to first words and language comprehension have been reported also<br />
in Brazil (Novaes, Mendes, & Figueiredo, 2006). In general, the communication<br />
options currently available to parents can be considered under two broad<br />
categories: auditory based and nonauditory based.<br />
Auditory-Based Communication<br />
The term “auditory based” includes the development of spoken language<br />
through the use of hearing devices to facilitate full integration of the child into<br />
mainstream society. It does not preclude the use of speechreading, facial<br />
expressions and naturally occurring gestures.<br />
The first hurdle in this approach is parental acceptance of hearing aids for<br />
402 Olusanya
their babies at such an early age because hearing aids are associated more<br />
commonly with elderly people. The issue of cosmetic acceptability is then<br />
likely to follow (Furuta & Yoshino, 1998; Mutton & Peacock, 2005). Behindthe-ear<br />
hearing aids publicly announce an invisible disability in a baby, which<br />
could be culturally embarrassing to parents and cause them great stress in<br />
responding to inquiries from neighbors and friends about these “strange”<br />
devices in an apparently normal child. During the initial stages, some parents<br />
may be vulnerable to the not uncommon misconception that hearing aids are<br />
not necessary because the child will outgrow the disability. Some even may<br />
be offered unorthodox therapies, such as medicinal plants and animal fat to<br />
treat the “hearing ailment” (Andrade & Ross, 2005; Kale, 1995; Odebiyi &<br />
Togonu-Bickersteth, 1987).<br />
The cost of hearing aids, ear molds, batteries, drying capsules and repairs<br />
is another important consideration. In some countries, such as Brazil, Mauritius<br />
and South Africa, hearing aids are provided free or subsidized in public<br />
hospitals. However, the quality of hearing aids provided is limited to the<br />
most basic models and there are always long waiting lists of eligible patients<br />
of all ages, although preferences may be given to infants and young children<br />
(Swanepoel, 2006).<br />
Many of these factors apply to an even greater extent to the use of cochlear<br />
implants and influence the parents’ decision-making process (Lynas, 2005;<br />
Munoz-Baell & Ruiz, 2000). It is not uncommon to find that even after making<br />
an informed and appropriate choice, parents still seek more time to adjust to<br />
the new reality and it is always prudent not to pressure them to immediately<br />
follow up on their choices.<br />
A great motivation for parents often comes from the assurance and evidence<br />
that all the efforts involved in supporting the child are worthwhile.<br />
Testimonials of other parents with successful experiences are valuable and<br />
just as powerful as the displeasure of unsatisfied parents to prospective parents,<br />
which is perhaps the greatest challenge for service providers in developing<br />
countries. Parents would make any necessary financial sacrifice in<br />
anticipation of visible progress in speech and language development; however,<br />
the challenge for the interventionist is securing the ongoing parental<br />
participation crucial to achieving satisfactory language outcome that is commensurate<br />
with the quality of the services provided.<br />
A further challenge is the multilingual settings in many developing countries<br />
where most families have a second national language along with an<br />
ethnic or tribal language. The language used in the home environment may<br />
be different from that used by the interventionist or in the educational setting.<br />
This may present difficulties for the interventionist and ultimately undermine<br />
the efficacy on Auditory-Verbal intervention programs if not well managed<br />
(Gupta, & Chandler, 1993; Penn, 1998).<br />
Support from primary care physicians, nurses and ancillary health workers<br />
EHDI in Developing Countries 403
is essential for the prompt enrollment and retention of children in familyoriented<br />
intervention programs because they are usually the first to be contacted<br />
by parents about health-related concerns. However, this group of<br />
workers requires appropriate education on the range of current possibilities<br />
with EHDI in order to provide well-informed counsel to parents. Such training<br />
also should help them recognize and acknowledge the limits of their<br />
competencies and professional experience and refer parents for appropriate<br />
and timely intervention services within the context of the multidisciplinary<br />
participation required for optimum outcomes. The use of nonspecialists during<br />
an acute shortage of qualified professionals is necessary but should be<br />
limited to providing basic support and referral services (Shrestha, Baral, &<br />
Weir, 2001; Wirz & Lichtig, 1998).<br />
In an attempt to address some of these issues, the WHO (2004) developed<br />
guidelines on hearing aids and hearing services in developing countries. This<br />
initiative includes efforts aimed at providing affordable hearing aids and<br />
services and setting up services for delivery, fitting, follow-up, repair and<br />
training. Recognizing that less than 10% of hearing aids manufactured worldwide<br />
and that only 750,000 of the estimated 32 million hearing aids needed<br />
annually reach developing countries, a global partnership called “WWHearing<br />
— Worldwide Hearing Care for Developing Countries” —has been inaugurated<br />
to address the complex task of providing sufficient quantities of<br />
affordable hearing aids and services for developing countries (WHO, 2006).<br />
This group comprises key stakeholders, such as policymakers, service providers,<br />
trainers and users in developing countries; major donors; and expert<br />
advisers across relevant professional disciplines. Already, low-cost, solarpowered<br />
hearing aids increasingly are being made available (Parving &<br />
Christensen, 2004), usually at less than US$100 each but still far from the<br />
WHO’s target price of US$40. Many groups like Godisa (based in Botswana),<br />
Project IMPACT, Comcare, Hearing International and Christoffel-<br />
Blindenmission are engaged actively in the task of achieving this target price<br />
(McPherson & Brouillette, 2004).<br />
The obvious concern is the trade-off between cost and functionality (Olusanya,<br />
2004). Presently, most of the instruments and services being developed<br />
are primarily for adult users, and these may have very limited use for the<br />
pediatric population. Further research is needed on this age group. In contrast<br />
to the progress made toward affordability and availability of hearing aids,<br />
cochlear implantation is still beyond the reach of many communities in the<br />
developing world, although notable progress is evident in a growing number<br />
of countries (Belal, 1986; Berruecos, 2000; Farhadi, Daneshi, Emamjomeh, &<br />
Hasanzadeh, 2000; Grandori & Hayes, 2006; Swanepoel, 2006; Zeng, 1995). As<br />
the benefits of amplification become more established, the additional benefits<br />
available from cochlear implantation also will become apparent.<br />
Effective auditory-based intervention require more than the fitting of hearing<br />
devices (Meadow-Orlans, Spencer, Koester, & Steinberg, 2004). It requires<br />
404 Olusanya
active, ongoing, culturally appropriate collaboration between the intervention<br />
specialists and the child’s family. Parents must be engaged to be active<br />
participants in the intervention program and discouraged from shifting more<br />
attention to siblings without special needs at the expense of the child with<br />
hearing loss. However, the interventionists must be sensitive to parental emotions,<br />
stress and grief as they adjust to the special and often unfamiliar needs<br />
of an apparently healthy child. To be effective, early intervention must facilitate<br />
developmentally appropriate language skills and enhance the family’s<br />
understanding of its infant’s strengths and needs, build family support and<br />
confidence in parenting the child and promote the family’s ability to advocate<br />
for the child especially for suitable educational placement (JCIH, 2000). Unfortunately,<br />
there are many institutional and cultural barriers to mainstreaming<br />
in developing countries, but these are not insurmountable (Eleweke &<br />
Rodda, 2000). Parents collectively can become catalysts for policy changes<br />
through effective advocacy.<br />
Another major challenge is the acute manpower shortages in many countries;<br />
only few tertiary academic institutions offer audiology-related training<br />
except for special education or ear, nose and throat surgery (Alberti, 1999;<br />
Madriz, 2000; Russo, 2000; Swanepoel, 2006). In this vital area, governments<br />
can play an effective role at minimizing cost by equipping educational institutions<br />
to provide relevant and up-to-date training and promoting exchange<br />
programs with overseas institutions in developed countries. The training<br />
curricula for health professionals, interventionists and teachers need to be<br />
adapted and enhanced appropriately. In addition, because primary care physicians<br />
wield considerable influence over parental health-seeking behaviors,<br />
it also is important to identify and address reasons for their ineffectiveness at<br />
facilitating a prompt referral process for timely/appropriate intervention as<br />
well as their poor adherence to EHDI guidelines for best practices (Moeller,<br />
White, Shisler, 2006; Kemper, Uren, Moseley, Clark, 2006; Cabana, Rand,<br />
Powe, Wu, Wilson, Abboud, Rubib, 1999). For example, as part of efforts to<br />
accelerate training to increase the availability of relevant manpower and enhance<br />
professional involvement, various nongovernmental cross-country initiatives<br />
to provide Internet-based training are being developed by groups in<br />
Nigeria and South Africa with support from nonprofit organizations in the<br />
United States, Australia, the United Kingdom and Canada.<br />
Similarly, free Internet-based training support for parents increasingly is<br />
becoming more widely available from various hearing health-related organizations.<br />
However, such Internet-based educational resources may be of limited<br />
use in areas of developing countries where the literacy rates are low,<br />
computer access limited and social infrastructures poorly developed. Nevertheless,<br />
progress toward self-development through further learning and community<br />
support for persons with special needs is evident in a growing<br />
number of countries. Overall, prospects are still good for high-quality service<br />
delivery for persons with hearing loss (Silverman & Moulton, 1997), and<br />
EHDI in Developing Countries 405
international agencies and relevant professional associations can play a crucial<br />
role in fostering the attainment of this goal more rapidly.<br />
Nonauditory-Based Communication<br />
The most common and oldest form of intervention for children with<br />
PCEHL in developing countries is enrollment in schools for children with<br />
hearing loss in which sign language is the predominant mode of communication.<br />
Such enrollment often occurs as late as age 10 because parents are<br />
reluctant to accept this mode of communication. The delay also has been<br />
attributed to past failure in accessing auditory-based intervention. Thus, the<br />
nonauditory-based communication option is fast becoming an alternative<br />
choice when all options for auditory-based intervention have been exhausted,<br />
found unsatisfactory due to the lack of requisite expertise or simply do not<br />
exist. Some parents may be compelled to choose this option for economic<br />
reasons or if they themselves already have sign language skills. Parents, of<br />
course, reserve the right to choose nonauditory-based interventions for other<br />
reasons but in many cultures, the social stigma of having to learn sign language<br />
can be a major disincentive for parents of children with PCEHL (Munoz-Baell<br />
& Ruiz, 2000).<br />
Many developing countries have no provision for persons with disabilities<br />
in general. Public schools for children with hearing loss often are overpopulated,<br />
poorly maintained and dependent on charitable donations, thereby<br />
limiting their capacity to adapt to educational and technological advances.<br />
Government mandates, similar to the Individuals with Disabilities Education Act<br />
or the Americans with Disabilities Act, governing employment rights for people<br />
with disabilities also do not exist in many developing countries. The prevailing<br />
culture of noninclusion isolates persons with hearing loss from wider<br />
society for life. Therefore, it is not uncommon to find that children with<br />
PCEHL grow up without any independent means of livelihood and end up<br />
among the “poorest” of the poor (Elwan, 1999; Olusanya et al., 2006b). This<br />
concern is a major one for indigent parents who desire a better life for their<br />
children so that their children may provide them economic support in their<br />
old age. Parents are unlikely to ignore these considerations when choosing a<br />
communication option for their children with hearing loss. Regardless of the<br />
preferred communication mode, early intervention through early hearing<br />
detection is more efficacious and desirable.<br />
Conclusions<br />
EHDI services in most of the developed world have begun to address<br />
effectively the burden of permanent congenital and early onset hearing loss to<br />
children, their families and society. Hospital-based universal hearing screening<br />
of newborns and infants substantially supported by public funding makes<br />
406 Olusanya
this goal achievable. Reservations toward promoting similar programs in<br />
developing countries are no longer warranted as demonstrated by the voluntary<br />
progress that has been and continues to be made by primarily<br />
nongovernmental organizations in providing sustainable and culturally appropriate<br />
EHDI programs. The prospects of government-backed free EHDI<br />
services may be dim; however, the majority of patients in developing countries<br />
who currently bear the cost of other health services would likely be<br />
willing to take advantage of effective, time-bound hearing health interventions<br />
if they were available. Several opportunities exist for international organizations<br />
and relevant professional associations to be engaged actively in<br />
support of EHDI in developing countries. Positive evidence emerging from<br />
the growing number of pilot programs affirms the value of using alternative,<br />
cost-effective, community-based platforms in which conventional hospitalbased<br />
newborn screening programs miss the majority of babies who are born<br />
outside regular hospitals and who are at greater risk of prelingual hearing<br />
loss. The current resolutions of the WHA on the global prevention of hearing<br />
impairment and the management of disability; as well as the early childhood<br />
initiatives by UNICEF, UNESCO and the World Bank provide additional<br />
moral impetus for extending this “silent, achievable and important revolution”<br />
throughout the developing world to forestall the communicative, educational,<br />
social and economic disabilities associated with early childhood<br />
hearing loss.<br />
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418 Olusanya
The Volta Review, Volume <strong>106</strong>(3) (monograph), 419-431<br />
Beyond Early Intervention:<br />
Providing Support to Public<br />
School Personnel<br />
Kathryn Wilson, M.A., CCC-SLP, Cert. AVT ®<br />
At age 3, children with hearing loss transition from Part C early intervention to<br />
Part B public school services. These children represent a heterogeneous population<br />
when considering factors such as communication approaches; speech, language, auditory<br />
and cognitive skills; social-emotional and motor development; parental involvement;<br />
hearing technology; ethnicity and additional challenges such as learning<br />
disabilities. School personnel must have the necessary knowledge, skills and abilities<br />
to serve this diverse population. This article describes the North Carolina Resource<br />
Support Program (RSP), an outreach program designed to address the needs of public<br />
school personnel serving students who are deaf or hard of hearing ages 3-21. Program<br />
components including staff, services and future directions are discussed.<br />
Introduction<br />
Amazing strides have been made to screen newborns for the presence of<br />
hearing loss and to provide early intervention to infants and toddlers who are<br />
deaf or hard of hearing in the 21st century. The benefits of early identification<br />
and early intervention are well documented. For children identified in the<br />
first months of life, fit with appropriate amplification and enrolled in early<br />
intervention in a timely manner, research suggests that speech, language and<br />
vocabulary outcomes as well as social-emotional development are significantly<br />
better than for children who are identified later (Yoshinaga-Itano, 1995,<br />
2004; Yoshinaga-Itano & Sedey, 2000; Yoshinaga-Itano, Sedey, Coulter, &<br />
Mehl, 1998). The 1-3-6 model for screening, diagnosis, amplification and enrollment<br />
in intervention ensures that more children transition from early<br />
intervention to public school services with age-appropriate speech, language,<br />
vocabulary and social-emotional skills. In this new era of early identification<br />
and intervention, children can be fit with hearing aids in the first months of<br />
Kathryn Wilson, M.A., CCC-SLP, Cert. AVT ® , is director of the Resource Support Program<br />
in the Office of Education Services for the North Carolina Department of Health and Human<br />
Services and an adjunct professor at the University of North Carolina—Chapel Hill.<br />
Beyond Early Intervention 419
life. A growing number of children also are receiving cochlear implants during<br />
the birth-to-three years. With increased access to information, parents<br />
may explore a variety of communication approaches and choose from an<br />
array of options.<br />
In the United States, a transition from early intervention services to preschool<br />
services occurs at age 3. School personnel are faced with the challenge<br />
of meeting the needs of a heterogeneous group of children who are deaf or<br />
hard of hearing as well as those who have additional learning difficulties and<br />
are from ethnically diverse backgrounds. What are successful methods for<br />
training and supporting school personnel in their endeavors to implement<br />
effective programming and practices in public schools? This article describes<br />
the North Carolina Resource Support Program (RSP), an outreach program<br />
that addresses the needs of public school professionals who serve children<br />
who are deaf or hard of hearing at transition time and beyond.<br />
Background<br />
Although it is increasingly possible for children who are identified early to<br />
develop communication and language skills in close parallel to their hearing<br />
peers as a result of improved screening procedures and appropriate amplification<br />
technology and intervention programs, most of these children and<br />
their families require ongoing intervention, support and guidance during the<br />
preschool years. For example, North Carolina has been screening newborns<br />
for hearing loss for almost seven years and has a comprehensive early intervention<br />
program for children ages birth to 3. During fiscal year 2005-2006,<br />
77% of three year olds transitioning from early intervention to public school<br />
preschool services qualified for ongoing special education services and had<br />
an Individualized Education Program (IEP) in place at the time of transition<br />
(J. Dunn, personal communication, August 21, 2006; R.A. Everett & L. Kendall,<br />
personal communication, August 14, 2006).<br />
Given the robust relationship between oral language and success in reading<br />
(Katz, Shankweiler, & Liberman, 1981; Mann, Shankweiler, & Smith, 1984;<br />
National Institute of Child Health and Human Development, 2005; Shankweiler,<br />
Liberman, Mark, Fowler, & Fischer, 1979; Snow, Tabors, Nicholson, &<br />
Kurland, 1994; Storch & Whitehurst, 2002) and the formal reading process<br />
that now typically begins near the end of the kindergarten year rather than in<br />
first grade, it is vital that children acquire the requisite language, phonological<br />
awareness and vocabulary skills before entering kindergarten in order to<br />
prepare adequately for the learning-to-read process. Variables such as the age<br />
of identification, appropriate amplification and early intervention determine<br />
linguistic outcomes and school success for children who are deaf or hard of<br />
hearing. In addition, the skills and training of the child and family’s service<br />
providers are regarded as key factors that affect the child’s progress. Kozleski,<br />
Mainzer and Deschler (as cited in Luckner, 2003) stated, “Whether in special<br />
420 Wilson
education or general education, there is growing evidence that the single<br />
most important influence in a student’s education is a well-prepared, caring<br />
and qualified teacher” (p. 5). A knowledgeable and well-trained teacher is<br />
essential to providing the necessary support and guidance to children and<br />
their families during early intervention and following transition from early<br />
intervention to public preschool services. This is true for children who transition<br />
from early intervention with age-appropriate or near age-appropriate<br />
language and vocabulary skills to ensure that they receive the ongoing support<br />
necessary to maintain language and vocabulary levels similar to those of<br />
their peers who are typically developing and to those children who demonstrate<br />
significant delays in language and vocabulary. Children in this second<br />
category are particularly at risk for problems related to success in reading and<br />
subsequent academic failure (Ling, 1989; Robertson, 2000). Because of the<br />
potentially significant education delays the children in this group demonstrate,<br />
the need for highly qualified professionals is even more substantial.<br />
That all children are deserving of qualified educators and related service<br />
personnel is a widely accepted view. The challenge is the shortage of appropriately<br />
trained personnel to meet the needs of the new generation of children<br />
with hearing loss identified at or near birth who transition from Part C early<br />
intervention services to public school Part B services at age 3. At the preservice<br />
level, only eight out of 70 colleges and universities with deaf education<br />
programs in the United States offer specialized training in auditory/oral<br />
education (Houston & Harrison, 2006). Because most college and university<br />
deaf education programs don’t focus on developing the specialized skills<br />
professionals need to work with children learning spoken language, teachers<br />
of the deaf, speech-language pathologists and audiologists already working<br />
in the field often pursue continuing education opportunities to develop these<br />
skills. Professionals can take advantage of online training programs such as<br />
FIRST YEARS, workshops and seminars provided by hearing aid and cochlear<br />
implant manufacturers, certificate programs, CEU opportunities offered<br />
through professional organizations and mentoring programs. The<br />
remainder of this article discusses detailed information about the North Carolina<br />
RSP, a state-funded and -operated program that provides training and<br />
support to public school personnel who serve students who are deaf or hard<br />
of hearing ages 3 to 21.<br />
History<br />
The Office of Education Services RSP<br />
In October 1999, North Carolina mandated newborn hearing screening in<br />
the state’s birthing hospitals. Historically, most children were not identified<br />
and enrolled in early intervention until age 2. Before 2000, children who were<br />
Beyond Early Intervention 421
identified as deaf or hard of hearing received early intervention and preschool<br />
services until age 5 and, in some cases, until age 6 through the Department<br />
of Health and Human Services (DHHS). The DHHS served children<br />
until kindergarten entry, although federal and state policy stated that public<br />
school programs—Part B—were responsible for children age 3 and older.<br />
Beginning with the 2001-2002 school year, North Carolina public schools<br />
began assuming responsibility for serving children upon their third birthday.<br />
With this transfer, new service delivery challenges for children who are deaf<br />
or hard of hearing were presented to administrators of public school services<br />
at the state and local levels.<br />
Perhaps the greatest challenge for public school systems is the lack of<br />
appropriately trained educators and speech-language pathologists to meet<br />
the needs of the new generation of infants and toddlers who are deaf and<br />
hard of hearing. Beginning in 1999-2000, at the same time that North Carolina<br />
implemented universal newborn hearing screening, the state began to experience<br />
a paradigm shift in the communication options parents were choosing.<br />
Presently, the combination of universal newborn hearing screening and the<br />
provision of information about all communication options through organizations<br />
such as BEGINNINGS for Parents of Children Who Are Deaf or Hard of<br />
Hearing, Inc., has resulted in the majority of parents choosing a spoken language<br />
approach (BEGINNINGS, 2005) (see the article by Alberg, Roush and<br />
Wilson, this issue, page 259). Data gathered by the Office of Education Services<br />
indicate that for fiscal year 1996-1997, 60% of families chose a sign<br />
language option, and the remaining 40% chose either the Cued Speech, Auditory-Verbal<br />
or auditory/oral options. A review of statistics from the last<br />
quarter of fiscal year 2005-2006 showed that 65% of families in the statewide<br />
birth-to-three program chose either the Auditory-Verbal or auditory/oral<br />
approach, 15% chose Total Communication, 6% identified the “other” category<br />
and 14% were “undecided.” Although the majority of the 115 North<br />
Carolina public school systems employed one or more teachers of children<br />
who are deaf or hard of hearing and all employed speech-language pathologists,<br />
only a limited number of systems had professionals with specialized<br />
training in working with children with cochlear implants and whose primary<br />
mode of communication was spoken language.<br />
An additional challenge to school systems was serving preschool-age children.<br />
Historically, schools did not begin to provide services to children who<br />
are deaf or hard of hearing until entry into kindergarten. Although the RSP<br />
was established to provide support to public schools serving preschool children,<br />
it also began receiving, and has continued to receive, requests to provide<br />
support for older students. Typical cases include students who were<br />
identified late, implanted late or transitioned from one communication approach<br />
to another; students for whom English is not the primary language<br />
spoken in the home; and students for whom there are concerns regarding<br />
reading comprehension and achievement. To provide the essential support<br />
422 Wilson
for both developmental and remedial learners, the need for a well-trained,<br />
experienced and highly qualified team was identified as a fundamental component<br />
of adequate service delivery.<br />
Staff<br />
The RSP began with two full-time positions and has expanded to include<br />
three full-time and two part-time staff. Program staff are licensed as teachers<br />
of the deaf, speech-language pathologists and audiologists and have specific<br />
expertise and experience in a variety of communication approaches. The team<br />
comprises Certified Auditory-Verbal Therapists ® , individuals fluent in the<br />
Cued Speech approach and skilled signers. Members of the team are either<br />
licensed, certified or demonstrate expertise in more than one communication<br />
approach or area of licensure. Two members of the team are National Board<br />
Certified teachers in special education. These same two staff members have<br />
obtained the Highly Qualified status in keeping with requirements of the No<br />
Child Left Behind Act. Additionally, team members have work experience in a<br />
variety of settings, including public schools, residential schools, early intervention<br />
home-based services, private practice and a hospital-based cochlear<br />
implant program. The average number of years of experience for team members<br />
is 27, with a range of 20 to 35 years. In an effort to maximize resources<br />
already in place, the RSP was established and staffed with existing funding<br />
and vacant positions allocated for one of North Carolina’s schools for the<br />
deaf. No new funding or allocations were required to implement this muchneeded<br />
outreach component.<br />
As described, members of the RSP team have many years of experience in<br />
all communication approaches and with a variety of age groups. The depth<br />
and breadth of staff expertise and specific knowledge allow the program<br />
director to triage each request and assign the most appropriate person or<br />
persons to a case. In addition to staff expertise and experience, other factors<br />
that seem to promote success and changes in teaching practices among professionals<br />
served by the RSP include the following.<br />
All team members have worked in public schools, which increases the<br />
RSP staff’s credibility. As one staff member stated, “They know we have<br />
walked in their shoes.”<br />
Team members understand the high cost of educating children with<br />
special needs and the financial constraints most schools face. Staff members<br />
are skilled in helping public school personnel to identify and maximize<br />
existing resources.<br />
Staff members are able to provide ongoing and continuous support.<br />
Responses to referrals and requests for support are made in a timely<br />
manner (i.e., one to two business days).<br />
RSP staff can develop a clear picture of what is needed by helping<br />
Beyond Early Intervention 423
Services<br />
professionals to develop a plan of action and then to “work their plan.”<br />
The results increase staff members’ motivation.<br />
RSP staff members are willing to work side by side with professionals<br />
not just by telling them what to do, but also by showing them how to<br />
do it.<br />
Emphasis is placed on self-evaluation. School professionals are encouraged<br />
to self-evaluate the effectiveness of their practices and programs<br />
before staff make suggestions and recommendations.<br />
A variety of services are offered to professionals in public schools, including<br />
consultation, observations, evaluations, IEP development, staff development<br />
and mentoring. Although the RSP was established primarily to provide<br />
support to professionals, parents also may request support. In either case (i.e.,<br />
parent or professional request for support), services only are provided at the<br />
invitation of the school system’s exceptional children’s director. RSP staff<br />
strive to work in concert with both school system personnel and families<br />
rather than in the role of advocate for either entity.<br />
Consultation. Consultative services are provided in person or through phone,<br />
fax or e-mail. An onsite consultation usually is provided in conjunction with<br />
an observation of a student in the school setting.<br />
Observations. For students in both special and regular education settings, observations<br />
can be requested for several different purposes, including assessment<br />
of the acoustic environment; level of student participation and ability to<br />
process information in a group setting; appraisal of the placement; use of<br />
appropriate modifications, accommodations, strategies and techniques; and<br />
delivery of services in accordance with the IEP. In some situations, checklists,<br />
such as those available from Children’s Hospital Boston, are used to assist the<br />
observer in assessing a student’s potential to transition from sign language to<br />
a spoken language approach or to a mainstream setting. Typically, a meeting<br />
is held immediately after an observation in order to provide an overview of<br />
findings, respond to questions from school personnel and develop an action<br />
plan if needed. The RSP staff member sends a written report detailing the<br />
observation and suggestions to the school system and parents after the onsite<br />
observation and consultation. Table 1 depicts the type and number of consultative<br />
services the RSP team delivered during the period of July 1, 2005, to<br />
June 31, 2006. For the same period, 21 onsite observations were conducted for<br />
students age 3 to 5, and 23 onsite observations were conducted for students<br />
age 5 to 21.<br />
Evaluations. These are conducted in the areas of speech, receptive and expressive<br />
language, vocabulary, listening, speech perception and written language.<br />
424 Wilson
Table 1. Type and Number of RSP Consultative Services Delivered from July 1,<br />
2005, to June 31, 2006<br />
Consultative Service Phone Fax E-Mail In Person<br />
Parents 126 0 69 114<br />
Professionals 306 13 939 439<br />
Although most school systems in North Carolina have the capacity to evaluate<br />
children with both formal and informal measures, the RSP receives requests<br />
for assistance in this area. A request for evaluation services usually<br />
occurs when a school system does not have a professional with the appropriate<br />
skills to assess the student in one or more areas or, in some situations,<br />
a second opinion is desired. In either case, the RSP team involves the professional(s)<br />
working with the student during the entire evaluation process in an<br />
effort to build capacity at the local level through onsite training in the administration,<br />
scoring and interpretation of a variety of assessments. School<br />
professionals are asked to exhaust all of their available resources for evaluations<br />
before seeking support from the outreach program. During fiscal year<br />
2005-2006, 130 evaluations were completed.<br />
IEP development. The Individuals with Disabilities Education Act requires that an<br />
IEP include the student’s present level of performance, proper goals and<br />
benchmarks and criterion for mastery, how and when progress will be reported<br />
to parents, related services, frequency and intensity of services and<br />
accommodations and modifications needed for a student to access the curriculum.<br />
For families going through the IEP process for the first time as the<br />
child transitions from early intervention, the process can be confusing and<br />
overwhelming. Early intervention programs emphasize family-centered practices.<br />
During the birth-to-three period, an Individualized Family Service Plan<br />
(IFSP) provides the framework for the services the child receives. The goals<br />
set forth in the IFSP primarily are family driven and reflect the parents’<br />
priorities. When a three-year-old child with hearing loss transitions, there is<br />
a shift from the family-centered practices endorsed by early intervention<br />
programs to a more formal and rule-driven process. Parents require information<br />
and guidance about the IEP process well in advance of the child’s<br />
third birthday in order to prepare adequately for transition from early intervention<br />
to public preschool services.<br />
North Carolina has developed procedures to enhance the transition process<br />
for children who are deaf or hard of hearing and their families. Once the child<br />
reaches age 2, the regional early intervention program director notifies, in<br />
writing, the appropriate Local Education Agency (LEA) regarding the child’s<br />
birth date, expected date of transition, communication approach and other<br />
relevant information to benefit the LEA in preparing for transition. Giving the<br />
Beyond Early Intervention 425
school system notification a full year in advance of the actual transition is<br />
recommended to grant the LEA time to identify appropriate personnel to<br />
meet the child’s unique communication needs. North Carolina guidelines also<br />
recommend a meeting with service providers, the infant-toddler service coordinator<br />
and the parents six months before transition. At this meeting parents<br />
are informed of all service options for the child, which may include visits<br />
to various sites and settings. A transition planning meeting is convened 90<br />
days before the child’s third birthday. Evaluations are reviewed, and the need<br />
for additional evaluations is determined. IEP development and possible<br />
placement options may be discussed. One month before the child’s third<br />
birthday the preschool IEP team convenes. The IEP document may be completed<br />
and signed at this time to become effective on the child’s third birthday.<br />
What roles, then, do RSP staff play during the development of the initial<br />
IEP? RSP staff attend very few IEP meetings; however, they often play a key<br />
role in assisting parents and professionals with the development of an appropriate<br />
IEP outside of the formal IEP meeting. This service is provided<br />
through the consultation model. Keeping in mind that the overarching goal<br />
for the RSP is to work effectively and collaboratively with parents and professionals,<br />
the team’s role is to provide information and support rather than<br />
to advocate for either the professionals or the parents. Parents who need an<br />
advocate present for IEP meetings are encouraged to access the services of the<br />
parent educators employed by BEGINNINGS.<br />
In addition to requests for support at transition, RSP staff also receive<br />
requests for IEP development for older students who demonstrate educationally<br />
significant language delays. In general, these students are more than two<br />
years delayed in their understanding and use of language. They often<br />
struggle in mainstream environments, and increased special education services,<br />
alternative testing procedures and non-diploma pathways are being<br />
considered. For a variety of reasons, these students have not met their IEP<br />
goals and objectives for one or more years and continue to fall farther behind<br />
academically. Using a model first introduced by Walker (2004) RSP staff assist<br />
school professionals and parents with developing a long-term, multiyear plan<br />
to close the existing language gap. Closing the language gap is one of the<br />
factors regarded as necessary for success in the mainstream. Once a student<br />
has attained language skills that are approximately age appropriate, he or she<br />
has greater potential to learn a variety of academic subjects and ultimately<br />
complete the requirements required for high school graduation. The longterm<br />
plan consists of specific information regarding projected rate of progress<br />
for each year of the plan in language and vocabulary. A long-term plan<br />
describes both the kinds of special education services and the amount of time<br />
needed daily or weekly to achieve the desired outcomes. Like an IEP, a<br />
long-term plan is developed with both parent and professional input. Unlike<br />
the IEP, a long-term plan defines parental roles and responsibilities in the<br />
426 Wilson
process of closing the language gap in terms of participation in weekly parent<br />
sessions and amount of recommended carryover time outside of the school<br />
environment. All components needed to achieve the target of age-appropriate<br />
language skills are identified and discussed. Assisting local school professionals<br />
and parents of remedial students in the development and implementation<br />
of long-term plans is regarded as an extremely valuable component<br />
offered by the RSP. The expectation is that developing and implementing this<br />
concept will increase the number of students who are deaf and hard of hearing<br />
in the state who will be able to read and write on a par with their hearing<br />
peers upon graduation from high school.<br />
Staff development. Regularly providing a variety of workshop training opportunities<br />
to public school personnel is a primary objective of the RSP. To meet<br />
this objective, the RSP contracts with the Auditory Learning Center, a private,<br />
nonprofit agency in Raleigh funded by the General Assembly of North Carolina.<br />
The RSP director and the executive director of the Auditory Learning<br />
Center meet at least two times a year to discuss training needs identified by<br />
public school personnel and to plan the training calendar. Modules from the<br />
Auditory-Verbal International, Inc., Standardized Curriculum (2000-2003) are<br />
presented regularly, with topics such as hearing and audiology, cochlear<br />
implants, spoken language, parent guidance, development of auditory function,<br />
Auditory-Verbal strategies and techniques and mainstreaming. In addition<br />
to the modules, the Auditory Learning Center presents seven days of<br />
training throughout the course of a school year on the Bloom & Lahey (1978)<br />
model of normal language development. Although the modules are presented<br />
“live,” some can be accessed through satellite set-ups at remote locations,<br />
making training more affordable and accessible for professionals who<br />
might otherwise have to travel long distances. In addition to the annual<br />
calendar for training, the RSP team responds to requests from individual<br />
school systems. The team provides workshops at the invitation of the exceptional<br />
children’s director to address professionals’ training needs at the local<br />
level. There is no charge to public schools for workshops presented by the<br />
RSP, and school systems are encouraged to invite and include personnel from<br />
neighboring districts so that as many professionals as possible can benefit<br />
from the workshops. During fiscal year 2005-2006, 141 training sessions or<br />
workshops were conducted for 883 education professionals and 68 parents.<br />
Mentoring. Workshops are one way of meeting staff development needs; however,<br />
this format cannot meet the needs of all professionals. The RSP staff<br />
recognized the need to develop multiple strategies for personnel development<br />
of adult learners who exhibit a variety of learning styles. Some professionals<br />
find it challenging to apply information presented in workshops or<br />
in-service trainings to their everyday “real-world” school setting. According<br />
to the Westchester Institute for Human Services Research (1998), effective<br />
Beyond Early Intervention 427
training programs emphasize feedback and follow-up. Therefore, in addition<br />
to the series of workshops for public school personnel, a mentoring component<br />
has evolved to provide regular, ongoing, onsite support to assist professionals<br />
in applying workshop content to practice.<br />
Gallacher (1997) described the stages of mentoring relationships, characteristics<br />
of effective mentors, the components of a mentoring program and the<br />
challenges associated with the mentoring process. When a request for mentoring<br />
is received, it is essential that RSP staff first have a clear understanding<br />
of the mentee’s reasons for the request. Is the request based on the needs and<br />
interests of the professional, or is the professional being encouraged to have<br />
a mentor by administrators or perhaps a student’s family? Once the purpose<br />
and goals are established, a plan is developed to define how often and how<br />
long mentoring activities will occur and the specific types of mentoring activities.<br />
The mentor and mentee discuss how feedback will be given both<br />
during and following a session. Because the majority of mentoring activities<br />
that RSP staff provide occur on site rather than by video review, travel time<br />
in addition to the time necessary for the actual visit; review of the lesson plan<br />
before the visit; report writing; and communication through phone, fax and<br />
e-mail all must be taken into consideration when developing a plan. Mentoring<br />
is indeed a time-intensive process for both mentors and mentees, and both<br />
parties must take steps to ensure that all necessary resources are available and<br />
in place. The effectiveness of the mentoring relationship also is examined<br />
regularly. Clearly, this type of personnel development requires planning,<br />
strong organizational skills, openness to feedback, positive attitudes, selfevaluation<br />
skills and sustained commitment to achieve long-term goals.<br />
Future Directions<br />
The RSP has experienced an increase in the number of services requested<br />
and delivered each year since its inception. It is expected that this trend will<br />
continue at least in the foreseeable future as more parents and professionals<br />
become aware of the outreach services available to them; as more children<br />
enter public schools with varying needs; and as the current workforce pursues<br />
the knowledge, skills and abilities to address the needs of a new generation<br />
of students who are deaf or hard of hearing. The RSP will continue to<br />
provide observations, consultations, evaluations and support for IEP and<br />
long-term plan development. The team also will support school systems that<br />
decide to establish classroom programs for students who are deaf and hard of<br />
hearing when needs cannot be met in regular or resource settings. In addition<br />
to the workshops currently offered, the team is working in partnership with<br />
the Auditory Learning Center and BEGINNINGS to develop more workshops,<br />
including a newly developed workshop that will address variables<br />
that influence successful outcomes in reading and literacy; developmental<br />
sequences and intervention strategies for reading aloud, oral narration and<br />
428 Wilson
phonologic and phonemic awareness; and a variety of application activities.<br />
Other topics school system personnel have requested include information<br />
and intervention strategies for working with students who have additional<br />
learning difficulties and providing services to children from bilingual and<br />
non-English-speaking homes. It is expected that the mentoring component<br />
will continue to develop given the growing body of evidence to support the<br />
effectiveness of this type of personnel development. Finally, the RSP staff<br />
envision establishing a Web site that will allow North Carolina professionals<br />
to communicate and network with one another regarding ideas, concerns and<br />
information related to improving the education of students who are deaf and<br />
hard of hearing.<br />
Conclusion<br />
Many positive developments have taken place in recent years for children<br />
who are deaf or hard of hearing, their parents and the professionals who<br />
serve them. Unquestionably, the movement toward early identification increases<br />
potential for communicative competence, success in school and independence.<br />
Many variables contribute to successful outcomes. Chief among these are<br />
the skills and expertise of the professionals who guide the child and family<br />
through early intervention, the preschool years and beyond. Evidence suggests<br />
that preservice programs specializing in auditory/oral and Auditory-<br />
Verbal practices are limited. A variety of in-service programs are available,<br />
although many require professionals to travel and training-related expenses<br />
can be prohibitive.<br />
In response to changes in early identification and the role of public schools<br />
in providing services to preschool children who are deaf or hard of hearing,<br />
the Office of Education Services established the RSP to assist in meeting the<br />
needs of public school personnel. A variety of services and activities designed<br />
to build capacity at the local level are provided by a well-trained and highly<br />
qualified staff at no cost to the public schools. Now in its fourth year of<br />
operation, the RSP continues to expand in terms of number of requests and<br />
services provided. Being able to provide onsite support is one of the major<br />
advantages identified by both RSP staff and recipients of the program’s services.<br />
The challenges encountered in North Carolina are likely to be experienced<br />
in other states, and the RSP can be an effective and replicable model for<br />
providing outreach to school personnel.<br />
References<br />
Auditory-Verbal International, Inc. (2000). Standardized curriculum. Alexandria,<br />
VA: Author.<br />
BEGINNINGS for Parents of Children Who Are Deaf or Hard of Hearing, Inc.<br />
Beyond Early Intervention 429
(2005).Communication options. Retrieved August 22, 2006, from http://<br />
www.beginnings.org.<br />
Bloom, L., & Lahey, M. (1978). Language development and language disorders.<br />
New York: Wiley.<br />
Children’s Hospital Boston (2003). Children with cochlear implants who sign:<br />
Guidelines for transitioning to oral education or a mainstream setting. Retrieved<br />
August 23, 2006, from http://www.childrenshospital.org<br />
Gallacher, K. (1997). Supervising, mentoring, and coaching: Methods for supporting<br />
personnel development. In P.J. Winton (Ed.), Reforming personnel<br />
preparation in early intervention: Issues, models, and practical strategies (pp.<br />
191-214). Baltimore: Paul H. Brookes.<br />
Houston, K.T., and Harrison, J. (2006). Meeting the needs of children with hearing<br />
loss in the 21st century: The quest for spoken language. PowerPoint presentation<br />
at the Association of College Educators of the Deaf and Hard of Hearing<br />
2006 Conference, Denver, CO.<br />
Katz, R.B., Shankweiler, D., & Liberman, I.Y. (1981). Memory for item order<br />
and phonetic recoding in the beginning reader. Journal of Experimental Child<br />
Psychology, 32, 474-484.<br />
Ling, D. (1989). Foundations of spoken language for hearing-impaired children.<br />
Washington, DC: Alexander Graham Bell Association for the Deaf and<br />
Hard of Hearing.<br />
Luckner, J.L. (2003). Job satisfaction: Perceptions of a national sample of<br />
teachers of students who are deaf or hard of hearing. American Annals of the<br />
Deaf, 148(1), 5-17.<br />
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Beyond Early Intervention 431
The Volta Review, Volume <strong>106</strong>(3) (monograph), 433-434<br />
Author Index for Volume <strong>106</strong><br />
<strong>106</strong>(1)<br />
Charlesworth, Ann; Charlesworth, Robert; Raban, Bridie; and Rickards, Field.<br />
(2006). Reading Recovery for Children with Hearing Loss. The Volta Review<br />
<strong>106</strong>(1), pp. 29-51.<br />
Eriks-Brophy, Alice; Durieux-Smith, Andrée; Olds, Janet; Fitzpatrick, Elizabeth;<br />
Duquette, Cheryll; and Whittingham, JoAnne. (2006). Facilitators and<br />
Barriers to the Inclusion of Orally Educated Children and Youth with Hearing<br />
Loss in Schools: Promoting Partnerships to Support Inclusion. The Volta<br />
Review <strong>106</strong>(1), pp. 53-88.<br />
Most, Tova; Aram, Dorit; and Andorn, Tamar. (2006). Early Literacy in Children<br />
with Hearing Loss: A Comparison Between Two Educational Systems.<br />
The Volta Review <strong>106</strong>(1), pp. 5-28.<br />
Verté, Sylvie; Hebbrecht, Lies; and Roeyers, Herbert. (2006). Psychological<br />
Adjustment of Siblings of Children Who Are Deaf or Hard of Hearing. The<br />
Volta Review <strong>106</strong>(1), pp. 89-110.<br />
<strong>106</strong>(2)<br />
Dillon, Caitlin M.; and Pisoni, David B. (2006). Nonword Repetition and<br />
Reading Skills in Children Who Are Deaf and Have Cochlear Implants. The<br />
Volta Review <strong>106</strong>(2), pp. 121-145.<br />
Neuss, Deirdre. (2006). The Ecological Transition to Auditory-Verbal<br />
Therapy: Experiences of Parents Whose Children Use Cochlear Implants.<br />
The Volta Review <strong>106</strong>(2), pp. 195-222.<br />
Reed, Charlotte M.; and Delhorne, Lorraine A. (2006). A Study of the Combined<br />
Use of a Hearing Aid and Tactual Aid in an Adult with Profound<br />
Hearing Loss. The Volta Review <strong>106</strong>(2), pp. 171-193.<br />
Robertson, Lyn; Dow, Gina Annunziato; and Hainzinger, Sarah Lynn. (2006).<br />
Story Retelling Patterns Among Children with and Without Hearing Loss:<br />
Effects of Repeated Practice and Parent-Child Attunement. The Volta Review<br />
<strong>106</strong>(2), pp. 147-170.<br />
<strong>106</strong>(3)<br />
Alberg, Joni; Wilson, Kathryn; and Roush, Jackson. (2007). Statewide Collaboration<br />
in the Delivery of EHDI Services. The Volta Review <strong>106</strong>(3), pp. 259-<br />
274.<br />
Author Index 433
Bohnert, Andrea; Spitzlei, Vera; Lippert, Karl L.; and Keilmann, Annerose.<br />
(2007). Bilateral Cochlear Implantation in Children: Experiences and Considerations.<br />
The Volta Review <strong>106</strong>(3), pp. 343-364.<br />
DesJardin, Jean L. (2007). Family Empowerment: Supporting Language Development<br />
in Young Children who are Deaf or Hard of Hearing. The Volta<br />
Review <strong>106</strong>(3), pp. 275-298.<br />
McKay, Sarah. (2007). Management of Young Children with Unilateral Hearing<br />
Loss. The Volta Review <strong>106</strong>(3), pp. 299-319.<br />
Moore, Jan Allison; Prath, Scott; and Arrieta, Adrianne. (2007). Early Spanish<br />
Speech Acquisition Following Cochlear Implantation. The Volta Review<br />
<strong>106</strong>(3), pp. 321-341.<br />
Olusanya, Bolajoko O. (2007). Early Hearing Detection and Intervention in<br />
Developing Countries: Current Status and Prospects. The Volta Review<br />
<strong>106</strong>(3), pp. 381-418.<br />
Schorr, Efrat A. (2007). Early Cochlear Implant Experience and Emotional<br />
Functioning During Childhood: Loneliness in Middle and Late Childhood.<br />
The Volta Review <strong>106</strong>(3), pp. 365-379.<br />
White, Karl R. (2007). Early Intervention for Children with Permanent Hearing<br />
Loss: Finishing the EHDI Revolution. The Volta Review <strong>106</strong>(3), pp. 237-<br />
258.<br />
Wilson, Kathryn. (2007). Beyond Early Intervention: Providing Support to<br />
Public School Personnel. The Volta Review <strong>106</strong>(3), pp. 419-431.<br />
434 Author Index