Taming The Octopus

T A M I N G T H E O C T O P U S
An overview of the systems of care
for children under age 5 with special
health care needs in Charlotte-Mecklenburg

C O N T E N T S
2 Introduction
Research, writing and design
by Jonathan Scott (jonscottinc.com)
Cover illustration by Jessica White
Published January 2021
by Smart Start of Mecklenburg County
Section 1
4
DEFINING ‘SPECIAL’
Maternal and Child
Health Bureau definition
Prevalence data
Eligibility criteria
Child Find, LICC, Zfive
12 Meet Abi and Demayne
Section 2
14
SYSTEMS OF CARE
Ecosystem map
Components of the
systems of care
24 Meet Ricky and Isaiah
Section 3
26
RECOMMENDATIONS
Gaps in services, barriers
to access
Why Smart Start?
Suggestions for improving
the system
Acknowledgments
30 Appendices
Parent survey
Provider networks

INTRODUCTION
Spanning the entirety...
Vision
Children in Charlotte-
Mecklenburg enter
kindergarten healthy
and ready to succeed.
Mission
Smart Start of
Mecklenburg County
mobilizes resources,
forges partnerships,
and supports families
to improve early
childhood health,
education and
development and
ensure children
are prepared for
kindergarten.
of North Carolina, 75 local partnerships of the North Carolina Partnership for
Children serve all of the state’s 100 counties. Established by the General Assembly
in 1993, NCPC and the local partnerships’ shared mission is to advance a high
quality, comprehensive, accountable system of care and education for each child
beginning with a healthy birth.
The local partnership for Charlotte-Mecklenburg is called Mecklenburg Partnership
for Children—also known as Smart Start of Mecklenburg County. Smart Start is
a 501(c)(3) nonprofit organization that administers over $30 million annually in
state, county and private funds to programs serving local children from birth to age
5, as well as their families and caregivers.
We fund programs in three broad categories: early care and education, health, and
family support and universal pre-k. Smart Start manages MECK Pre-K, the county’s
pre-k program, two internal programs, and an early brain development campaign.
We partner with 13 local agencies to fund 20 more programs; among them are a
handful of early intervention services and kindergarten-readiness programs specific
to children with special health care needs (CSHCN). We know that early screening
and intervention are critical to their long-term development and well-being—and
we want to be able to do much more for them.
The impact of our funding and system-level support is measured in the Community
Early Childhood Profile (EC Profile), which includes county-level indicators for
which the local partnerships are held accountable by NCPC in accordance with
state law.
In 2019, our local board of directors endeavored to develop a more thorough
understanding of the complex systems of care available to local families of children
who are experiencing needs and challenges outside the widely accepted developmental
milestones. In many ways these systems are analogous to an octopus, with
each tentacle having a succession of agencies devoted to serving families. As each
tentacle wraps the child in services, an increasingly complex array of eligibility
requirements, funding mechanisms, and esoteric terminology presents its own set of
challenges for parents and caregivers. Often they become full-time managers of their
children’s health. Staying on top of the bureaucracy is like wrestling an octopus.
To better understand this fascinatingly complex creature, Smart Start funded a
county-wide needs assessment of available services for CSHCN under the age of 5.
We retained Jonathan Scott, author of Navigating the Maze: An Assessment of Mental
Health Resources for Children and Adolescents in Charlotte-Mecklenburg. His work for
this report became somewhat of a continuation of his previous work, as the mental
health assessment had identified birth to 5 as a significant gap in services within the
behavioral health ecosystem. Under the direction of Chief Strategy Officer Jennifer
Stamp, the work commenced in late 2019, and by early March the initial phase of
research was completed: a treetop-level analysis of the systems of care, a selective
literature review, and a familiarity with applicable diagnoses.
Then the Covid-19 pandemic hit.
Unfortunately, due to the economic shutdown not every organization involved
in the systems of care for CSHCN could participate in the study. Many of the
stakeholders are still struggling to keep their organizations afloat while continuing
to do their best to serve children and families severely affected by the crisis.
Consequently, this report is intended to be the beginning of a community-wide
conversation rather than a definitive action plan for improving the system. The
recommendations in this report should be examined in light of Covid-19: which
strategies should be prioritized for implementation as we continue to fight the
virus, and which may not be practical at this time in light of the nonprofit
sector’s strained resources.
Despite the challenges presented by the pandemic, the second phase of
research was fairly robust. Engagement included nearly three dozen stakeholders,
including parents, special educators, pediatricians, therapists, and health care
workers, as well as government officials, philanthropic leaders, managed care
administrators, policy advocates, academic experts, social workers, care coordinators,
community agency staff, and other providers of services and support.
Their invaluable advice and input contributed to the suggestions for improving
the system, as well as the analyses of the systems of care, eligibility requirements,
gaps in services, and barriers to access. Their answers to one-on-one interview
questions were always instructive and often quite compelling.
In addition, we want to express gratitude to the parents and caregivers who
participated in Smart Start’s online survey, especially given the fact that they had
to carve out time during a particularly stressful chapter in their lives. Data from
the survey can be found in the appendix.
This is a living document intended to give readers a snapshot of the ecosystem
of services at the time it was written. It is our hope that the community will join
with Smart Start as we utilize this needs assessment to convene, support and
invest in strategies designed to improve outcomes for these families.
Together we can tame the octopus.
Jake House
Chief Executive Officer
Smart Start of Mecklenburg County
1
2
3
4
5
6
7
SEVEN GUIDING PRINCIPLES
The following guiding principles
served as a lens through
which the research for this
report was conducted:
Children’s social-emotional
needs should be as much of
a priority as their medical or
physical health needs.
A developmental delay is not
the same as a developmental
disability.
The role of socio-economics
in a child’s early development
cannot be overstated.
Addressing the needs of
young children means
addressing the needs of
families.
With intervention and
prevention, it’s never too
early.
Prevention, early intervention
and service provision should
be coordinated across family,
community, educational,
governmental, and health
and human services.
Focus should be placed on
needs, limitations and common
challenges rather than
specific diagnoses or disabilities.
2
3

DEFINING ‘SPECIAL’
All children are special.
Children with special
health care needs are ‘those
who have or are at increased
risk for a chronic,
physical, developmental,
behavioral or emotional
condition and who also
require health and related
services of a type or amount
beyond that required by
children generally.’
They all have unique characteristics that make them individually remarkable. Yet
the word “special” also denotes a subpopulation of children with distinct differences
accompanied by extraordinary challenges. Consequently, if a parent remarked that
their child is special, the appropriate response could be 1) congratulatory, or 2)
empathetic. The duality of the term as it applies to children makes it rife with confusion.
“Exceptional” is problematic, too, because it refers not only to children with
superior intellect—or “gifted” children—but also to those with physical, emotional,
developmental and intellectual disability.
Further complicating these commonplace labels is the reality of children who experience
uncommon difficulty in certain aspects of their lives while excelling at others.
They may be extremely bright, even gifted, while at the same
time having “special needs.”
To provide children who have special needs the same opportunities
as other children requires a consensual definition: one that
paints a complete picture of who they are, what characteristics
they share, and those that set them apart from each other and
from “typically developing” children. Most importantly, we need
to understand what they require to be able to thrive. Thus, the
question of how to define the synonyms “exceptional child,”
“special child” and “special needs child”—or, in people-first language,
“a child with special needs”—is a logical place to begin.
The Maternal and Child Health Bureau, which is part of the
U.S. Department of Health and Human Services, defines children
with special health care needs* as “those who have or are at
increased risk for a chronic, physical, developmental, behavioral
or emotional condition and who also require health and related services of a type or
amount beyond that required by children generally.”
By parsing this rather broad definition, we can begin to appreciate the diversity and
complexity of the population of children with special needs:
At increased risk. Factors such as premature birth and low birth weight have long
been known to be early indicators of a greater-than-average possibility a child will
have or may develop special needs. More recently, researchers have identified a disproportionate
prevalence of special needs among children adversely affected by the
social determinants of health.
Chronic. To be considered chronic, a need or specific condition must be expected
to last at least 12 months.
Physical. Medical diagnoses in children, including curable and incurable conditions,
run the gambit from asthma to complex medical needs.
Developmental. Failure to meet a developmental milestone could be a delay (with
intervention, the child is able to eventually reach it, although later than other
children) or a disability (despite intervention, the child is unable to attain a specific
degree of development; the disability may follow the child into adulthood).
Behavioral. The terms “mental health” and “behavioral health” are synonymous.
Mental health is more than the absence of illness; it is a state of well-being.
Emotional. Social development is synonymous with emotional development, and
is defined as the gradual gaining of skills, relationships and attitudes that enable a
person to interact with society.
Children meeting the Maternal and Child Health Bureau definition also represent
a range of levels of functional ability: some are rarely affected while others experience
significant limitations in their daily lives. The definition is necessarily broad in
order to cast a wide net over a population of children who are members of a highly
heterogeneous group. As a group, children with special health care needs cope with
an incredible multitude of needs, conditions and disabilities. They also represent all
racial and ethnic groups, ages, and family income levels.
.......
What do they have in common?
Despite the diversity of the special-needs population, its members have many things
in common. Most striking is a need for nurturance above and beyond that which
most families can provide by themselves. In industry-speak, their commonality
is “high utilization of services.” Those services generally range from educational
to medical to mental health. The families of children with special needs may also
require social services to impact determinants of health such as housing, transporta-
*As shorthand the bureau uses the initials CSHCN; however, this report uses the phrase “children with special
needs” to steer clear of bureaucratese. Also, because this report focuses on the birth to 5 population, we use
the term “young children” to refer to children under the age of 5. (The phrase “birth through 5” refers to children
under the age of 6.) Additionally, we follow the definitions established by the Centers for Disease Control for
“infant” (under 1 year of age), “toddler” (1-year-olds and 2-year-olds), and “preschoolers” (3-year-olds and
4-year-olds). “Newborns” are infants up to 1 month old.
AGE DISTRIBUTION FOR
MECKLENBURG CHILDREN
27%
CHILD POPULATION
IN MECKLENBURG BY RACE
45%
16%
s Age 0-5
s Age 5-10
s Age 10-15
s Age 15-18
6.3%
4.7%
9.8%
34%
s African American
s White
s Asian
s Other
s Two or more races
CHILD POPULATION
IN MECKLENBURG BY ETHNICITY
21%
79%
28%
29%
s Hispanic/Latinx
s non-Hispanic/Latinx
Source: Adapted from Council for Children’s Rights 2020 State of our Children
4
5

tion, education, employment, safety and
nutrition.
Child Trends, a national children’s
research organization, has identified
seven commonalities among children
with special needs:
1) More frequent medical care and need
for specialized care,
2) Higher rates of exposure to adverse
childhood experiences (ACEs),
3) Greater risk of disciplinary removal
and placement in restrictive settings
in education,
4) Academic challenges,
5) Behavioral problems and victims of
bullying,
6) Lower household income, and
7) Social isolation of caregivers.
“Parenting special needs kids is sometimes
lonely. We are missing out on a
lot of things that you take for granted,”
says Lisa Smith, a blogger for Scary
Mommy. “Parenting special needs kids
can be exhausting. Yeah, I know: all parents
are tired. It’s not just the physical
rest that we sometimes give up. There is
so much stress. A disability often taxes a
family emotionally. Typically developing
kids grow up. They learn to do things
for themselves. They eventually leave
home. Many of our kids won’t.”
.......
How are they different
from each other?
Just as all children are special, all children
have needs. So, circling back to
the Maternal and Child Health Bureau
definition, what constitutes a “special
need?” According to the definition, a
need must fall “beyond that required
by children generally.” How then do
policymakers and medical and mental
health care professionals determine
which needs (or conditions or issues
or diagnoses) qualify as special?
In health care, a clinical diagnosis typically
serves as the jumping-off point for
treatment. Patients expect physicians to
be able to determine the cause of their
symptoms in order to be cured. It follows
that stratifying young children by
their diagnoses makes sense. However,
the application of prevailing diagnostic
criteria is inherently difficult for infants,
particularly in the mental health arena.
They simply haven’t reached a point
in their development for clinicians to
apply diagnoses with the same degree
of certainty as adults.
As a consequence, segmenting the
infant-toddler population by diagnoses
alone is insufficient. For children under
age 3, making a determination of special
need is based on failure to meet specific
developmental milestones. Although
there are established conditions (genetic
disorders, autism, vision impairment,
hearing loss, etc.) that manifest themselves
early enough to make a medical
diagnosis, many behavioral health clinicians
are reluctant to apply diagnostic
labels to very young children.
However, prevalence data by diagnosis
is available for children ages 3 and
older. For example, the Individuals with
Disabilities Education Act* determines
eligibility for special education services
for preschoolers based on 13 categories
of disability. Of the baker’s dozen, three
are by far the most prevalent for 3-yearolds
and 4-year-olds, both nationally
and in North Carolina: developmental
delay, speech or language impairments,
and autism.
* IDEA morphed from the 1975 Education for All Handicapped Children Act when Congress reauthorized the
act and changed its name in 1990. In 2004, congress changed the name again to the Individuals with Disabilities
Education Improvement Act; however, the act is commonly referred to as IDEA.
6
Defining special needs must therefore
recognize marked differences among
two distinct age groups. Children from
birth to age 5 are subsequently divided
into camps: birth to age 3 (infants and
toddlers), and ages 3 to 5 (preschoolers).
This delineator likely exists due to the
rapid progression of early developmental
milestones: 80% of brain development
happens in the first three years of life.
The dividing line between birth to 3
and 3 to 5 also represents a demarcation
of services focused on early prevention
and intervention versus early education.
Importantly, it translates into
which public institution is tasked with
providing services to children and their
families. For birth to 3, it’s Mecklenburg
County Children’s Developmental
Services Agency (CDSA). Beginning
at age 3, when children are old enough
to enroll in preschool, it becomes the
responsibility of Charlotte-Mecklenburg
Schools (CMS). For families struggling
to navigate the complex ecosystem of
services, the division is expressed in several
significant ways, to the extent that
transition services are necessary to help
them make the leap from one system to
the next.
If the services provided to these two age
groups and the county entities providing
them are so vastly different, why
is it important to examine the birthto-5
population collectively? Emphasis
is placed on the first five years of life
because a majority of children begin
kindergarten at age 5. It’s critically
important for children to enter school
fully prepared to succeed academically,
socially, physically and emotionally.
“With a strong and healthy beginning,
it is much easier to keep children on
track to stay in school and graduate,
pursue postsecondary education and
training, and successfully transition to
young adulthood,” according to NC
Child, a child advocacy organization.
How does Charlotte-Mecklenburg compare?*
327 million
Total U.S. population
19.6 million
Children under age 5
6%
Children under age 5 as a percentage
of total population
2.01 million
Number of children under age 5
with a special health care need
10.3%
Percentage of children under age 5
with a special health care need
.......
How many children under
age 5 with special needs live
in Charlotte-Mecklenburg?
The 2017-18 National Survey of Children’s
Health indicates that 10.3% of
children from birth to age 5 nationwide
have a special health care need. According
to the same survey, North Carolina’s
prevalence rate is 17%. Why the state’s
prevalence rate is significantly higher
than the nation as a whole is anyone’s
guess. Some see it as an indication of
the diversity of our state: we have many
rural areas where access to health care
is inadequate to provide rigorous early
10.3 million
Total N.C. population
587,192
Children under age 5
5.8%
Children under age 5 as a percentage
of total population
99,823
Number of children under age 5
with a special health care need
17%
Percentage of children under age 5
with a special health care need
intervention, and we have several large
cities where racial and ethnic disparities
may be a factor. Conversely, others see
it as a product of the “good job” North
Carolina does identifying children with
special needs.
If we apply the national and state prevalence
rates to Mecklenburg County, we
estimate that between 7,358 and 12,145
local children under age 5 have special
health care needs. We attempted to
1.05 million
Total Mecklenburg County population
71,440
Children under age 5
6.8%
Children under age 5 as a percentage
of total population
?
Number of children under age 5
with a special health care need
?
Percentage of children under age 5
with a special health care need
“truth test” this metric on several sources
interviewed for this report. Most of
the interviews began with the question,
“How many children in Mecklenburg
County under the age of 5 have special
health care needs?”
No one knew the answer.
Without a county prevalence rate, we
cannot gauge with certainty the extent
of the underserved population.
* Data in the first three rows of the table was sourced from the U.S. Census Bureau’s 2018 American Community
Survey. Data in the first two columns of the fourth and fifth rows are from the 2017-18 National Survey of
Children’s Health.
7

MEDICAID BY THE NUMBERS
According to the Kaiser Family
Foundation, 50% of children
birth to age 18 with special
needs in North Carolina are
Medicaid beneficiaries, compared
to 43% of the state’s
overall child population.
In the U.S., Medicaid/CHIP is
the sole source of coverage for
39% of children with special
needs, and another 8% have
Medicaid/CHIP to supplement
private insurance.
CMS’s head count on April 1, 2019, of
3- and 4-year-olds enrolled in preschool
Programs for Exceptional Children was
1,313. The number of children birth to
age 3 served by CDSA’s Infant-Toddler
Program in 2018-19 was was 2,567.
By combining these two head counts
and subtracting the sum (3,880) from
our lower estimate of 7,358, we estimate
an underserved population of 3,478. By
subtracting the sum from our top-end
estimate of 12,145, we estimate an
underserved population of 8,265.
Whichever prevalence rate you choose
to apply, the idea that thousands of
young chldren with special needs are
not receiving the interventions and
other services they likely need is
eye-popping.
At the heart of the discussion is the
stark difference between the official
definition of children with special
health care needs—a broad statement
that includes the qualifier “at risk”—
and the specific eligibility definitions
utilized by the organizations that serve
exceptional children.
Simply put, the public and private
agencies striving to serve this population
don’t have the capacity—nor the mandate—to
reach every child who meets
the Maternal and Child Health Bureau
definition. Children whose parents are
aware of their special needs, and whose
needs are deemed significant enough
to meet certain programs’ eligibility
requirements, receive services.
Conversely, children whose families are
unaware of their special needs—or are
in denial about the condition or don’t
trust the systems to do much about
it—go without services. And children
with less severe needs whose families
lack the resources to address them also
go untreated.
.......
How is ‘special’ defined
by eligibility criteria?
Whether your child meets the definition
of “special” or “exceptional” is largely
beside the point. What matters most is
whether your child meets certain eligibility
definitions established by service
providers and payer sources such as
Medicaid and private insurance.
Every payer source and service provider
defines eligibility differently. Understanding
who pays for what, and which
needs are eligible for services and which
aren’t, is fundamental to taming the
octopus.
Medicaid
Medicaid is a health insurance program
jointly funded by the state and federal
governments and managed by the states.
It’s the largest single payer for children
with special needs. Medicaid provides
health coverage for a wide range of
individuals with lower income, including
children, pregnant women, senior
citizens, and people with disabilities.
The public insurance program helps
pay for medical bills, prescription drugs,
hospital charges, and specialized therapies
such as occupational, physical and
speech therapy.
Basic eligibility requirements include
U.S. citizenship and permanent residency,
or proof of eligible immigrant
status. Individual states determine final
eligibility and benefits, and almost every
state has multiple Medicaid programs.
It can take up to 90 days to receive approval,
and eligibility must be renewed
annually.
Navigating Medicaid eligibility definitions
and the various programs or
“waivers” can be daunting. Case workers
at Mecklenburg County Department
of Social Services help county residents
determine their eligibility based on
family size, the child’s age, and monthly
household income. In North Carolina,
people are automatically eligible for
Medicaid if they receive Supplemental
Security Income, Work First Cash Assistance,
or Special Assistance for the Aged
or Disabled.
Some of the Medicaid programs that
cover children with special needs are:
3
The N.C. Innovations Waiver is for
people with Intellectual or Developmental
Disabilities who prefer to receive
services and support in their home or
community rather than in an institution.
There are a limited number of slots
and the wait can take up to 10 years. Individuals
with I/DD, mental health or
substance use disorder may also receive
(b)(3) services whereby Medicaid pays
for in-home skill building, intensive recovery
supports, and transitional living.
3
Medicaid for Pregnant Women covers
treatment for conditions that affect the
pregnancy. If a beneficiary is pregnant,
her newborn is automatically eligible up
to age 1. In addition, Pregnancy Care
Management provides case management
to at-risk women during and after pregnancy
and intervention early in their
term to promote healthy pregnancy and
positive birth outcomes.
3Community Alternatives Programs for
Children is a Medicaid waiver for longterm
care, to provide home- and community-based
services to children at risk
for institutionalization. CAP/C is for
individuals under age 21 who require
the same level of care as someone in a
hospital or nursing home and have a
family member who is willing and able
to participate in the care so they can live
at home rather than an institution.
The Affordable Care Act of 2010 (also
known as “Obamacare”) expanded
Medicaid eligibility to include more
people by placing higher limits on
household income. Yet North Carolina
is one of a dozen states that has declined
to expand Medicaid, even though the
federal government would foot 90% of
the cost. By some estimates, over half
a million North Carolinians would
become eligible under Medicaid expansion.
While Gov. Roy Cooper’s efforts to
expand Medicaid have languished for
over a year in the General Assembly,
the state did move forward in 2020
with an initiative dubbed “Medicaid
transformation.” In July 2021, Medicaid
reimbursement for medical services will
transition from a fee-for-service model
administered by the state Department
of Health and Human Services, to
managed care.
Managed care, also known as “capitated
payment,” is a health care delivery system
in which statewide prepaid health
plans, or PHPs, accept a set payment
per member per month to provide
services. Fee-for-service is the traditional
model whereby health care providers are
reimbursed on the basis of the number
of services they provide. Currently,
North Carolina administers Medicaid as
a split reimbursement program: behavioral
health services are paid for under
a managed care organization model
administered by Cardinal Innovations
Healthcare, and medical services are
reimbursed through fee-for-service.
(See sidebar on page 25 for updated
information on Cardinal’s status.)
Not all children qualify for Medicaid,
so the Children’s Health Insurance
Program was created by the federal
government under Title XXI of the
Social Security Act to expand coverage
for children whose parents have income
higher than allowed by Medicaid but
are unable to afford private insurance.
North Carolina’s CHIP program is
AUTISM INSURANCE REFORM
In 2015, North Carolina passed
a law mandating commercial
health insurance companies
cover specialized therapies, such
as applied behavior analysis,
for children with autism. ABA
therapies are expensive and
time-consuming: a board-certified
behavioral analyst may
spend up to 40 hours a week
one-on-one with a child. ABA
is essential for children on the
autism spectrum.
Yet, only a fraction of North
Carolina health insurance
plans cover the therapies. That’s
because the mandate applies
only to companies with 50
or more employees and those
having health insurance plans
that operate only in the state.
Most large employers in North
Carolina utilize a different type
of health insurance.
And North Carolinians can’t
buy coverage for ABA through
Obamacare because the General
Assembly opted to exclude
plans available through the
marketplace from the mandate.
That leaves families paying out
of pocket, scaling back therapy
hours to fit their budgets, or
forgoing treatment altogether.
The good news is a few large
employers in North Carolina
have decided to included ABA
therapies in their self-funded or
group plans. And state employees
can get ABA therapies paid
for through the State Health
Plan.
8
9

10
INFANT-TODDLER PROGRAM
ELIGIBILITY DEFINITIONS
Part C of IDEA says children
under age 3 qualify for the
Infant-Toddler Program if
they meet at least one of the
following two requirements:
A developmental delay
in one or more of the
following areas:
Cognitive (thinking
and learning);
Physical (moving, seeing,
hearing and health);
Communication
(understanding and using
sounds, gestures and words);
Social-emotional
(responding to and
developing relationships);
Adaptive (taking care of
one’s self when doing things
like feeding or dressing).
An established condition
with a physical or mental
diagnosis that has a high
probability of resulting in a
developmental delay. Some
examples are premature
birth, Down syndrome,
vision problems, hearing loss
and autism.
1
2
called NC Health Choice for Children.
It is managed alongside Medicaid and
has the same basic eligibility requirements.
Medicaid vs. private insurance
Families of children with special needs
who qualify for Medicaid typically
receive health care services at a lower
cost than families with third-party
insurance. Medicaid pays for a wide
range of medical and long-term services
and supports, many of which are not
covered by commercial policies. And
private insurance policies have annual
deductibles and copayments that require
families to pay thousands of dollars out
of pocket before insurance kicks in.
Commercial insurance is designed to
meet the needs of a generally healthy
population as opposed to children with
chronic needs. It generally doesn’t cover
long-term care and may offer limited
coverage of intensive services. Major
medical or comprehensive policies vary
widely depending on whether they’re
part of an employer-provided group
plan, self-funded company plan, or the
individual market. Private insurance
policies sold through the Affordable
Care Act Health Insurance Marketplace
can’t deny coverage on the basis
of a preexisting condition. And the
premiums are subsidized by the federal
government based on annual household
income.
Many families with private insurance
are also Medicaid beneficiaries. They use
Medicaid to pay for services not covered
by their major medical policies. According
to the Kaiser Family Foundation,
children with special needs who have
Medicaid or CHIP “are significantly
more likely to report that their coverage
is affordable compared to those with
private insurance alone.”
The ability to pay for insurance is
of particular concern for families of
children with special needs because the
demands of caring for them can impede
the caregivers’ ability to work. They may
not be able to work full-time or at all.
How capitated payment or “Medicaid
transformation” will affect families of
special kids is yet to be seen. Placing
a spending cap on Medicaid services
could disproportionately affect them by
limiting access to expensive yet necessary
treatments and services that aren’t
covered by private insurance.
Supplemental Security Income
SSI is a federally funded program
managed by the Social Security Administration.
It is funded by general tax
revenues, not Social Security taxes, and
is different from standard retirement
benefits. A beneficiary must be disabled,
blind or over the age of 65 and must be
a U.S. citizen or national with residency
in one of the 50 states, the District of
Columbia, or the Northern Mariana
Islands.
Parents of children with special needs
can apply for Supplemental Security
Income benefits for their children. For
a child to qualify, the disability must
result in severe functional limitations
and can be expected to cause death or
has lasted, or is expected to last, more
than 12 months. The list of disabilities
is called the Social Security Blue Book;
Part B provides a guide for the SSA and
its physicians to evaluate the eligibility
of children with special needs.
SSI provides monthly cash distributions
to meet basic needs for food,
clothing, and shelter for people who
have little or no income. Most states,
including North Carolina, will add
money to the federal payments. However,
SSI is only available to individuals
with assets of $2,000 or less, or couples
with $3,000 or less. Applications for
SSI benefits are made by scheduling an
appointment with a local SSA office.
Individuals with Disabilities
Education Act
As stated previously, IDEA splits services
for children with special needs into
two parts—Part C for newborns, infants
and toddlers (birth to age 3) and Part B
for preschoolers (ages 3 to 5). Provision
of early intervention services under Part
C is the responsibility of Mecklenburg
Children’s Developmental Services
Agency. Thus, CDSA is the local administrator
of the Infant-Toddler Program.
The eligibility criteria for Part C are
determined by each state. In addition,
each state must determine the percentage
of delay to be utilized as an eligibility
criterion. For example, in North
Carolina a child would qualify for services
by having a 30% delay in one area
of development, or a 25% delay in two
or more areas. Developmental delay is
measured by diagnostic instruments and
procedures as administered by qualified
personnel.
Part B of IDEA is administered by
Charlotte-Mecklenburg Schools. To
qualify for CMS’s Programs for Exceptional
Children, a preschooler must
be evaluated as having a disability and
be found in need of special education
or related services. A team of qualified
professionals and the child’s parent
make the determination of eligibility.
Children are assessed in all areas related
to the suspected disability, including
health, vision, hearing, social-emotional
status, intelligence, academic performance,
communication status, and
motor abilities.
The eligibility assessment not only
determines whether children have disabilities,
but also the nature and extent
of the special education and related
services they need. Part B requires that
children with disabilities are to receive
services and classroom instruction in the
“least restrictive environment”—whenever
possible, they should go to school
with children who are not disabled.
.......
How do providers locate special kids?
Not all parents are knowledgeable about
the developmental milestones children
reach at certain ages. And not all
children develop on the same timetable,
so many parents are reluctant to seek
help if their child isn’t progressing as
quickly as others. Often there’s a “wait
and see” approach to parenting. Even
when a developmental delay is apparent,
many parents are reluctant to seek help
because they don’t want people to apply
a label to their child.
Yet early intervention is critical to
ensuring the best outcomes for children
with special needs. Therefore, IDEA requires
all states to have a comprehensive
Child Find system.
Child Find
Child Find is intended to be a continuous
process of public awareness, screening,
and assessment in order to locate,
identify, and refer all young children
with disabilities or who are experiencing
a developmental delay to appropriate
early intervention services.
IDEA requires each Child Find system
to include procedures for:
1) screening for child health and development,
2) public awareness regarding who to
contact when a child is suspected of
having a delay or disability,
3) practices around interagency coordination
of Child Find efforts,
4) methods for processing referrals,
5) policies for determining eligibility for
services, and
6) methods of tracking which children
need follow-up once they’ve been
referred and when they’re receiving
services.
ELIGIBILITY FOR PROGRAMS
FOR EXCEPTIONAL CHILDREN
Part B of IDEA determines eligibility
for special education and
related services for preschoolers
partly based on the following 13
categories of disability:
Specific learning disability
(including dyslexia, dysgraphia,
dyscalculia, auditory processing
disorder, nonverbal learning
disability),
Other health impairment (for
example, Attention Deficit
Hyperactivity Disorder),
Autism Spectrum Disorder,
Emotional disturbance,
Speech or language impairment,
Visual impairment (including
blindness),
Deafness,
Hearing impairment,
Deaf-blindness,
Orthopedic impairment,
Intellectual disability (including
Down syndrome),
Traumatic brain injury, and
Multiple disabilities.
11

M E E T A B I & D E M A Y N E
R
achelle Lawrie is mom to two children with special
needs: Demayne, 7, and Abi, 4. Abi likes to put together
Legos, ride her bike or drive her electric car, and watch
“Little Baby Bum” nursery rhymes on her tablet. Demayne
is fascinated with trains and has an extensive collection of
Thomas & Friends railroad cars. The train enthusiast is also
a budding ventriloquist.
In many ways, the Lawries are like any other family
adapting to the new realities of Covid-19. During the
shutdown, Abi didn’t understand why they couldn’t go to
the gym, and Demayne doesn’t like learning online nearly
as much as going to school. Yet the pandemic has been a
minor setback considering all the family has been through
before.
Rachelle’s journey as a super-mom began immediately
upon Demayne’s birth. During the delivery, she was more
than worried: she’d been through four miscarriages and
had recently divorced. The moment Demayne was born, she
suspected something was wrong.
“He was so blue, he was almost gray,” she recalled.
“They told me they were going to take him to do some tests
and they would bring him back. And me being a first-time
parent, I thought that was part of giving birth. They take
them, they weigh them, and they do everything they need to
do. And then they bring them back.”
As the hours passed, however, Rachelle grew more and
more concerned. “Finally, a pediatrician came in to talk to
us and explained that he had a very severe heart murmur,”
she said.
That wasn’t all. Some of his organs were in the wrong
place, or absent altogether. The next time Rachelle saw
her baby, he was in a makeshift oxygen tent. The nurses
informed her that he was about to be airlifted to Duke University
Hospital.
“It was very chaotic. It was traumatic. It was scary. And I
didn’t feel like I was getting any information from the hospital.
They just told me he had to be taken away,” she said.
Eventually Demayne would be diagnosed with VACTERL
association, a group of birth defects which tend to co-occur.
He was only three days old when he had his first surgery,
and he couldn’t go home for another two-and-a-half
months. After only a week at home, he went back to Duke
for another surgery. By his first birthday, he’d spent four
months in the hospital and had endured five surgeries.
“The first year was the most uncertain,” Rachel said,
adding that Demayne has had 10 surgeries in all, including
three open-heart surgeries. Considering the amount of time
he spent as an infant with low oxygen, Rachelle is grateful
he doesn’t have any cognitive delay. In fact, he’s always the
top reader in his class and earns all A’s in math.
“I’m extremely proud of him because he’s worked exceptionally
hard to get where he is,” she said. “He’s a remarkable
little boy.”
12
When Demayne was about to turn 3, Rachelle was introduced
to her future fiancé, Naji Lee. Within a few months,
Naji and Rachelle decided to have a child together. Being
pregnant again made Rachelle relive the trauma of
Demayne’s birth. Fortunately, her doctor took her PTSD into
account and communicated with her throughout Abi’s birth.
“With Abi, I wasn’t kept in the dark about anything. So
everything went really well during her birth—even though
I was terrified,” Rachelle said.
Abi’s first year was “very smooth. She crawled on time,
she walked on time. She only crawled for about two weeks
and then she figured out walking was way better.” By her
18-month pediatric appointment, however, Abi was still nonverbal.
The pediatrician referred her to a speech therapist,
and over the next year Abi made progress.
Photos by Cherith Hutchins
But by age 2½, Rachelle noticed Abi’s temper tantrums
were much worse than the typically developing 2-year-old.
Rachelle talked with her pediatrician again and received
a referral for an evaluation. It would take four-and-a-half
months to get an appointment with a child psychiatrist.
The diagnosis was Autism Spectrum Disorder.
Abi’s psychiatrist referred her to a specialist in applied
behavior analysis, or ABA therapy. It would be another four
months before she could start therapy due to the long wait
list. The wait was worth it, though, as Abi is now going to
ABA for 35 hours a week and has made so much progress
she doesn’t need services through the school system.
Demayne is also thriving, especially taking into account
all he’s been through in his short life. He’ll soon be evaluated
for autism, and he’s successfully coping with some other
mental health issues like ADHD and depression.
Child Find is most effective when
professionals go to places where families
are, such as festivals, fairs, libraries, pediatrician
offices and child care centers.
Most often information is provided to
families without screenings, but Charlotte
Speech and Hearing Center does
do screenings at its Child Find events.
CDSA and CMS collaborate on Child
Find activities through the Local Interagency
Coordinating Council to ensure
families, preschool programs, physicians,
hospitals and health departments
are aware of referral, assessment and
eligibility procedures.
Local Interagency
Coordinating Council
The state Division of Public Health
recommends that every county in North
Carolina have an LICC. These local
councils serve as community-based
advisory groups for the implementation
of their systems of care for children
with special needs from birth to age 5.
LICCs are comprised of parents and
health care and early education providers,
and their goals are to provide a
forum for providers to collaborate and
for parents to learn about early intervention
services.
Child Find has traditionally been one
of the main activities of the LICC in
Charlotte-Mecklenburg. Before the
pandemic, the group met monthly. It
includes parents and professionals from
CDSA, CMS, the Department of Social
Services, the county health department,
Cardinal Innovations Healthcare, and
other service providers.
Zfive
Another local resource that periodically
organizes Child Find events is Zfive.
Founded in 2008 by Smart Start and
CDSA, Zfive is a community collaborative
of clinicians, researchers, service
providers, and parents dedicated to improving
the lives of children from birth
to age 5 with mental health issues.
Zfive offers licensed clinicians mentoring
opportunities to increase the
number of clinicians who are competent
in evaluating and treating the mental
health needs of young children. The
collaborative is also involved in peer
consultation to expand therapists’ understanding
of clinical issues related to
young children, and it has collaborated
with Youth and Family Services and
the Charlotte Area Health Education
Center in separate programs to expand
training for social workers and other
professionals in the early childhood
mental health profession.
What’s the difference between screening, assessment, evaluation and diagnosis?
A screening is a quick snapshot of a child’s overall behavior
and development. Screenings cover health (immunization,
wellness visits, hearing and vision), development,
and/or behavioral health. Screenings provide baseline
data and are often the first step towards identifying a
developmental delay or disability, medical condition, or
emotional-behavioral need.
Assessment is an ongoing examination of development
over time, to ensure the child is progressing and meeting
milestones. It provides information for planning
and individualization and may identify developmental
concerns not identified in screening, in which case an
evaluation may be required.
An evaluation is conducted to determine whether a
child is eligible for services. For example, infants and
toddlers may be evaluated to determine whether they
qualify for an Individualized Family Service Plan
(IFSP), and preschoolers for an Individualized Education
Program (IEP).
Diagnosis refers both to the process of identifying the
nature and cause of a medical or behavioral condition
and the conclusion reached by such analysis. A diagnosis
must be performed by a clinician, including but
not limited to a medical doctor or psychologist.
13

SYSTEMS OF CARE
Families are unique...
and because of their idiosyncrasies
and the complexity of the bureaucracy,
not all families of children with
special needs access the same services
in the same way. Instead they navigate
the ecosystem of services and
supports—the “systems of care”—
based on their household resources
and their child’s particular health
care needs. Just as a family receiving
Medicaid benefits will have a different
experience than one with commercial
insurance, a child diagnosed with a
lifelong disability will require more
intensive services than a child who
is experiencing a temporary developmental
delay.
IDEA
Part C
child
care
centers
Infant-
Toddler
Program
pediatrician/
primary care
physician
community
agencies
family
practice &
specialists
CCRI
care
coordinator
Preschoolers
( ages 3 & 4 )
care
coordinator
CCRI
Cardinal
family
practice &
specialists
community
agencies
pediatrician/
primary care
physician
behavioral
health service
providers
Programs for
Exceptional
Children
child
care
centers
IDEA
Part B
A system of care is broadly defined as
an array of effective, communitybased
services and supports for children
and their families. A system of
care should address their cultural and
linguistic needs to help them function
better at home, in school, in the community,
and throughout life. Ideally,
it would be a highly coordinated
network, yet Charlotte-Mecklenburg’s
systems of care are often described as
a “patchwork” rather than a continuum
of services.
IFSP
medical
home
CDSA
county health
department
FAMILY
home
visiting
programs
Polliwog
IDEA Part C
Transition Services
home
visiting
programs
CHILD
county health
department
medical
home
IEP
CMS
“It should be a collaborative model,”
said a director of a child development
center. “We have to talk to each
other as professionals. We have to
know each agency’s ins and outs so
that we can better direct the families
to resources. We may have some of
the same services, but I bet you offer
something different than I do.”
DSS
Early
Head
Start
Newborns, Infants
& Toddlers ( ages 0, 1 & 2 )
Polliwog
preschool
programs
DSS
14
15

EFFECTIVE SYSTEMS OF CARE
According to the Maternal and
Child Health Bureau, an effective
system of care for children
with special needs ensures:
Families are partners in care;
Screening occurs early and
continuously;
Families can easily use
community-based services;
Children and youth have
access to an accessible,
family-centered, comprehensive
medical home;
Adequate insurance and
funding is available to cover
services; and
Families and providers plan
for the transition to adult
care and services.
1
2
3
4
5
6
Other sources talked about the “silo
effect”—a dividing line between services
provided by the medical community
and the early education profession.
Even more silos are said to exist among
medical and behavioral health providers.
The silo effect may be the inevitable
outcome of a fractured system, the
manifestation of a breakdown in the
continuum of care.
“The good people offering services and
supports to children and families are
doing everything they can to fill in
the blanks,” said a child development
expert. “I see them as working together
to try to help one another help families
within a ridiculous system created by
the government, rather than as intentionally
silo-ed and unwilling to work
together.”
Perhaps the most significant contributor
to the silo effect is the way the Individuals
with Disabilities Education Act
was written into law in the mid-1970s.
IDEA is a federal law that ensures students
with disabilities are provided with
“free appropriate public education” that
is tailored to their individual needs.
Two of the four parts of IDEA are of
particular relevance to the birth to 5
population. Together they form the
two primary, county-based systems of
care—one for newborns, infants and
toddlers (ages 0, 1 and 2) and one for
preschoolers (ages 3 and 4). As depicted
in the ecosystem map on the preceding
pages, Part C funds the Infant-Toddler
Program, which is managed locally
by Children’s Developmental Services
Agency, and Part B funds the public
school system’s Programs for Exceptional
Children.
Beyond the defined services provided
through IDEA is an informal network
of governmental agencies, child care
centers, preschool programs and other
service providers. They are staffed by
special educators, preschool teachers,
physical therapists, occupational
therapists, speech-language pathologists,
social workers, mental health counselors,
service coordinators, case managers,
care coordinators, family navigators,*
interpreters, and other professionals
who provide services and supports to
the child—and often the entire family.
At the center of the two systems of
care is the medical home. It provides a
continuum of care as children transition
at age 3 from one system (Infant-Toddler
Program) to the next (Programs
for Exceptional Children). A medical
home is a family-centered approach to
providing comprehensive primary care.
Its components include a pediatrician
or primary care physician, the family
practice, any sub-specialists, and (sometimes)
a care coordinator, case manager,
or family navigator.
The following pages describe a few of
the services and supports that comprise
the two systems of care in Charlotte-Mecklenburg—it
is by no means
exhaustive. Each system is represented
on the ecosystem map as a series of
concentric rings around the family (for
newborns, infants and toddlers) or the
child (for preschoolers). That’s because
with IDEA Part C, emphasis is placed
on wrapping the family in services,
whereas IDEA Part B shifts focus to the
educational needs of the child.
It may be helpful to think of the ecosystem
map in the context of physics.
At the nucleus of all atoms is one or
more protons (parents) and a number
of neutrons (children). Circling the
* Service coordinators, family navigators, care
coordinators and case managers essentially perform
the same function: connecting families to services.
Different organizations use different terms to describe
this function. Social workers refer families to services,
too, and they may also be licensed to provide clinical
counseling services.
nucleus are a dynamic number of electrons
(services and supports) that jump
between orbits (subsystems of care)
when acted on by a force. For example,
in one moment a physical therapy clinic
is a component of the medical home
when it receives a referral from a pediatrician—and,
in the next moment, it’s a
collaborator in the network of child care
centers as it dispatches a therapist to a
center to provide services to a patient.
Thus, the systems of care are malleable
to meet the needs of the family and the
eligibility requirements of each payer.
.......
Medical home
Two hospital systems
Novant Health and Atrium Health are
the two local linchpins of the medical
home. Located within Novant Health
Presbyterian Medical Center, Hemby
Children’s Hospital has a total of 109
beds. Novant operates a developmental
and behavioral pediatric clinic on
Randolph Road.
Levine Children’s Hospital is a 234-bed
pediatric hospital owned by Atrium,
which has two clinics for developmental
and behavioral pediatrics, one in Charlotte
and one in Concord.
In Mecklenburg County alone, there
are hundreds of pediatricians and family
care physicians with varying levels of
awareness of the systems of care that exist
outside the medical home. Since the
Infant-Toddler Program and Programs
for Exceptional Children rely heavily on
referrals, increasing the medical homes’
awareness of these interventions is
paramount to increasing the numbers of
families served.
For many families of children with special
needs, their foray into the ecosystem
begins in the NICU—the neonatal
intensive care unit.* This is the ICU for
babies born prematurely or with birth
defects, or who develop an illness in
the maternity ward. At both hospitals’
NICUs, the services extend far beyond
medical, such as enrolling families in
Medicaid. For example, Levine has five
NICU family navigators who connect
parents to community resources and
provide informational, developmental,
and emotional support. They serve over
1,000 families each year.
Ideally, even the
smallest family practice
would provide this type
of support for children
with special health care
needs. Whether they’re
called family navigators,
care coordinators,
or case managers, these
professionals provide a
critical bridge between
the silos of medical
care and community,
educational and social
services. According to
a 2014 study by the
Lucile Packard Foundation
for Children’s
Health, nationally 35%
of families with a child
with special needs had
trouble accessing community-based
services,
and 22% of families
had problems getting
referrals to specialists.
Home visiting programs
Home visiting programs provide pregnant
women and vulnerable families
with the necessary skills and resources to
raise children who are healthy and ready
to learn.
“The focus of home visiting activities
includes providing prenatal and preventive
care, increasing parents’ awareness
of appropriate child development, and
teaching positive parenting strategies.
The common feature shared by all
programs is the supportive relationship
formed between the home visitor and
the family,” according to the Jordan
Institute for Families at the University
of North Carolina.
Services are provided in the home by
parent coaches whose credentials range
from a master’s degree and licensure, to
NICU GRAD SHAW RICHTER INSPIRES FUND
The Bee Mighty Fund was created in 2012 by
Candace and Michael Richter as part of the
Novant Healthcare Foundation. Having since
become its own nonprofit organization, Bee
Mighty provides financial resources for medical
therapy and equipment to NICU graduates.
The Richters’ son Shaw was born at 27 weeks
and spent 122 days in the NICU, undergoing
numerous surgeries and spinal taps before the
family could take him home.
less than 20 hours of training. Families
receive support from registered nurses,
licensed mental health clinicians, early
childhood educators, and other professionals
depending on the program.
Children “age out” of the programs at
age 3, 4 or 5, also depending on the
program.
* Smart Start funds one staff salary in Novant’s NICU.
16
17

Among the home visiting models that
were being utilized in Charlotte-Mecklenburg
prior to Covid-19 are:
3
3
3
Home-based Early Head Start focuses
on school readiness by serving homeless,
disabled and low-income families with
children from birth to age 3, as well as
pregnant women.
Parents as Teachers places emphasis
on parent-child interaction, development-centered
parenting, and family
well-being. It serves pregnant women
and children birth to age 5.
The Nurse-Family Partnership serves
first-time mothers with low income
during their pregnancy and for the first
three years of motherhood. It focuses
on economic self-sufficiency, pregnancy
outcomes, and maternal and child
health. The Nurse-Family Partnership
recently merged with Child First; both
will continue to operate as separate
models under the umbrella of the
National Service Office, in Trumbull,
Conn. Although it currently isn’t offered
in Mecklenburg County, Child First
is among the four most widely utilized
home visiting programs in North
Carolina. Child First provides intensive
services to families of young children
from birth to age 5 who have experienced
trauma and chronic stress.
Also absent from the lineup of local
programs is the Adolescent Parenting
Program for first-time parents under age
19; however, Smart Start funds a Parents
as Teachers model for pregnant teens
called Safe Journeys.
In addition, Thompson Child & Family
Focus offers a home-based parent education
model called Nurturing Parents;
Mecklenburg County Public Health
has provided a limited home visiting
service; two ABC-certified coaches with
Mecklenburg County addresses are
listed on the Attachment and Biobehavioral
Catchup website; and in 2020 the
Greenlight Fund began a local program
called ParentChild+.
Despite the profusion of home visiting
models, a 2016 study by the National
Home Visiting Resource Center
indicated that less than 1% of North
Carolina children under age 6 received
evidence-based home visiting.
Mecklenburg County Public Health
Two of the three programs within the
county health department that focus
specifically on children with special
needs are CMARC, or Care Management
for At-Risk Children, and CAP/C,
or Community Alternative Program/
Children. Both are funded by Medicaid.
CMARC (formerly Care Coordination
for Children, or CC4C) provides free
services to families with children under
age 5 who are at risk for or diagnosed
with long-term physical, developmental,
behavioral or emotional conditions.
Clients include children who have been
exposed to long-term stressful conditions
or who have been placed in foster
care, and NICU graduates. Nurses and
social workers serve as care managers to
refer families to health and community
resources; offer encouragement and support;
strengthen parent-child relationships;
and coordinate services between
health care providers, community
programs and family support programs.
The 2019-2020 fiscal year marked a significant
increase in CMARC’s caseload.
In the prior year, the county enrolled
2,724 children, and by June of 2020 it
had enrolled 3,561 children with a full
month remaining in the fiscal year.
CAP/C provides services for medically
fragile children under age 21
who might otherwise be placed in an
institution. The goal is to keep them at
home with their families by providing
in-home nursing care, case management
and other supports. Services include
respite, therapy, medical equipment
and supplies, home mobility aides, and
home and vehicular modifications.
In June of 2020, the county’s CAP/C
caseload totaled 10 children under age
5. Two private agencies, Quality Health
Care Services and Walker Home Care,
also provide CAP/C services to local
children.
.......
Infant-Toddler Program
The third program managed by the
health department that focuses on
children with special needs is the
Infant-Toddler Program. Funded and
mandated by Part C of IDEA, the program
is administered by the Children’s
Developmental Services Agency.
Mecklenburg County CDSA is one of
16 such agencies across the state. Most
cover multiple counties and report
directly to the N.C. Early Intervention
Branch of the Women’s and Children’s
Health Section in the N.C. Division
of Public Health,* but our CDSA has
a single-county catchment area and
is staffed through a contract with the
county health department.
The Infant-Toddler Program is a voluntary
system of coordinated services and
supports for families whose children
are experiencing a delay in one or more
areas of cognitive, physical, communication,
social-emotional, or adaptive
development—or have been diagnosed
with a condition that has a high probability
of resulting in a developmental
delay.
The CDSA coordinates evaluations
and early interventions for infants and
* The N.C. Division of Public Health is a division of the
N.C. Department of Health and Human Services.
toddlers from birth to age 3. On their
third birthday, children age out of Part
C and may become eligible for Part B
(Programs for Exceptional Children),
which is the responsibility of the public
school system.
When an infant or toddler is referred
to CDSA, the family has the opportunity
to work with an early intervention
service coordinator to determine
whether the child meets the eligibility
requirements for Part C. Among other
duties, the service coordinators’ role is
to refer families to services and supports
by utilizing the CDSA provider network
of community agencies, and to assist in
implementing the Individualized Family
Service Plan.
The IFSP is a written plan that describes
goals for the family and child, a timeline
for accessing services and supports, and
the team members responsible for executing
the plan. By federal law, all children
who qualify are entitled to receive
an IFSP within 45 days; all services are
to begin within 30 days. The IFSP is
automatically reviewed every six months
and can be updated at any time.
IDEA Part C Transition Services
When children age out of CDSA on
their third birthday, responsibility for
paying for their services shifts from
one department of state government to
another. Whereas the Infant-Toddler
Program is governed by the Department
of Health and Human Services,
Programs for Exceptional Children is
regulated by the Department of Public
Instruction.*
For parents, this means starting over
with a new system of care, new eligibility
criterion, new evaluations and
assessments, new services and service
settings, a new funding system, a new
service coordinator, a new plan, and a
new bureaucracy—CMS.
Families are guided through a series of
IDEA Part C Transition Services as their
children progress from CDSA to CMS.
The CDSA service coordinator works
with the family to
begin planning for the
transition to preschool
around the child’s second
birthday.
Then, no later than
three months before
their third birthday,
a transition planning
conference is held and
referrals are made for
evaluations and assessments.
(The conference
and referrals can occur
as early as nine months
out, but three months
is typical.) The conference
is attended by
the family, the service
coordinator, and ideally
the preschool teacher
(who will become the
new coordinator) or
another representative
from CMS.
The next step is for
CMS to complete any
evaluations or assessments
required to
determine eligibility
for the services the
family would like their
child to receive, such as
special education and
specialized therapies.
An individualized,
multi-disciplinary
evaluation must be
conducted to determine whether the
child has a disability that affects their
learning. After all evaluations have been
completed, another conference is held
with the family to determine if the child
is eligible for the preschool program for
INFANT-TODDLER PROGRAM
MANDATORY SERVICES
If included in the IFSP, the following services
must be made available to families:
3 Assistive technology devices and
services;
3 Audiology services;
3 Family training, counseling, and
home visits;
3 Health, medical, nursing, nutrition
and vision services;
3 Occupational and physical therapy;
3 Psychological services;
3 Service coordination;
3 Sign language and cued language;
3 Respite;
3 Social work;
3 Special instruction;
3 Speech-language pathology; and
3 Transportation and related costs.
OTHER SERVICES
Services that may be called for by the
IFSP, but are not required by law to be
provided by CDSA, include the following.
The agency has a sliding scale to help
pay for these services:
3 Child care;
3 Well child visits;
3 Genetics counseling; and
3 Women, Infants, and Children
Program (WIC).
* The state lead agency for Programs for Exceptional
Children is the N.C. Department of Public Instruction,
Exceptional Children Division, Office of School
Readiness.
18
19

Infant-Toddler Program enrollees by
gender, age, race/ethnicity, service setting
39%
4%
27%
GENDER 61% 56%
s Male
s Female
4.5%
RACE/
ETHNICITY 36%
28.5%
s African American
s Hispanic/Latinx
s White
s Asian
s Two or more races
exceptional children and any specialized
services.
Just as the CDSA is responsible for writing
an IFSP, the school system works
with families to develop an Individualized
Education Program. An IEP is a
written education plan designed to meet
the special education and related service
needs of a child. (The IEP is not just
for preschoolers; all CMS students in
the exceptional children’s program have
IEPs until their high school graduation.)
According to state regulations, the IEP
is to be written within 30 days of the
child’s third birthday, and services are
to begin on the third birthday unless
the child turns 3 when school is not in
session.
The final step is to determine which
preschool the child will attend, and
where they will go for specialized
AGE
s Age 0-1
s Age 1-2
s Age 2-3
6%
SERVICE
SETTING
94%
16%
28%
s Home
s Community-based
As previously stated, some preschoolers
simply don’t meet the eligibility requireservices.
For children who don’t meet
CMS’s requirements for Programs for
Exceptional Children, the CDSA service
coordinator will refer them to other
preschool programs like Head Start,
community-based preschools, neighborhood
early learning programs, and
activities families can access near their
homes such as story time, art classes,
and age-appropriate physical activities.
(Bright Beginnings, NC Pre-K and
MECK Pre-K don’t enroll children until
their fourth birthday.)
There are a variety of reasons why many
children don’t make the leap from
CDSA to CMS, and more research is
needed to understand the impacts of
this apparent breakdown in the continuum
of care. In addition, the transition
timeline itself is important because
failing to abide by the deadlines could
lead to an interruption in services.
Referrals to Infant-Toddler Program
by eligibility, enrollment status
50%
Total number of referrals to Infant-Toddler
Program over 5 years
2,192
6%
2,216
44%
2,264
2,405
2,567
’14-’15 ’15-’16 ’16-’17 ’17-’18 ’18-’19
Source: CDSA based on Dec. 1, 2019 headcount
s Child found eligible and
enrolled in program
s Child found ineligible to
enroll in program
s Child found eligible and
did not enroll in program
17.1%
Increase over
last 5 years
6.7%
Increase from
’17-’18 to ’18-’19
fiscal year
Finally, one of the most significant
differences between Part C and Part B is
the emphasis on providing families with
services through the Infant-Toddler Program,
versus focusing only on the educational
needs of the child in Programs for
Exceptional Children.
.......
Programs for Exceptional Children
Successfully transitioning from the
Infant-Toddler Program to Programs for
Exceptional Children is just one path
to receiving an IEP. Not all children
who enroll in CMS’s special education
program are CDSA graduates, and not
all of them enroll at age 3. In fact, there
are many portals to becoming a special
education student at CMS—and different
journeys once they get there.
ments at age 3. After a year of preschool
outside of the school system, they may
qualify for the Exceptional Children’s
program at age 4.*
Further, some children with special
needs may not require special education
at all if their cognitive disability isn’t
deemed “significant,” or if they have a
physical disability or medical diagnosis.
These students may be eligible to receive
a 504 plan instead of an IEP. That
means their rights are protected under
Section 504 of the Rehabilitation Act of
1973; in effect, it allows them to receive
the standard curriculum (N.C. Standard
Course of Study) by requiring schools
to make accommodations for their
special needs.
For students who receive special
curriculum (N.C. Extended Content
Standards), their IEP will determine
their placement in one of three different
types of classrooms, or a combination of
the latter of these two:
3
Located on South Davidson Street,
Metro School serves about 250 students
ages 3 to 22 who have severe cognitive
disabilities. Metro School exists for students
whose needs are too complex to
adequately serve them in a mainstream
public school. Most are medically fragile
and require total physical care. Others
have multiple disabilities such as visual
and hearing impairments in addition to
cognitive challenges.
3
“Self-contained classrooms” cater to a
specific group of children with the same
disability or similar learning needs. They
are run by a special education teacher
with help from several assistants. Class
sizes tend to be smaller (5-10) than
regular classrooms (20-30).
The purpose of self-contained classrooms
is to provide students who have
significant behavioral challenges or
cognitive disabilities with specialized interventions
and support without placing
them in Metro School.
3
In “inclusive classrooms,” students with
special needs are “mainstreamed”
with students without
disabilities. IDEA states
that children must have
access to the general
education curriculum
in the regular classroom
to the maximum extent
possible. One goal of
inclusive classrooms
is to educate children
with disabilities in an
environment where they
can interact socially with
typically developing
students.
“In the past, children
who had special needs
spent the entire school
day in a separate setting
from their peers, which
helped add to the stigma
that there’s something
‘wrong’ with students
who have special needs.
Students who are severely
disabled or extremely
disruptive might still
spend their day isolated
in their own classroom
setting, but many
schools try to combine
the self-contained classroom
with regular class
interactions as a way to
balance the inherent work-social ratio,”
says Suzie Dalien, a special educator and
founder of Special Education Resource.
* Or they may develop or be diagnosed with a disability
after they’ve already been enrolled at CMS in kindergarten
or later. CMS cannot legally diagnose children
for disabilities, and having a diagnosis doesn’t
automatically qualify them for special education.
SPECIAL EDUCATION SERVICES
Children who receive an IEP and who
access the general education curriculum
may also receive the following
classroom accommodations:
3 Preferential seating,
3 Repeated directions,
3 Frequent breaks,
3 Chunked or shortened assignments,
3 Extra set of books for home,
3 Copies of teacher’s notes,
3 Enlarged print materials,
3 Test read aloud, and
3 Small testing environment.
RELATED SERVICES
CMS may also provide the following
non-academic, disability-related
services:
3 Occupational, physical and
speech therapy;
3 Counseling;
3 Social work services;
3 Paraprofessional support;
3 Transportation;
3 Health or nursing services; and
3 Parent counseling and training.
20
21

187
Total number of children
under age 5 in YFS custody
Age 0-1 19%
Age 1-2 26%
Age 2-3 23%
Age 3-4 17%
Age 4-5 15%
Source: YFS, based on March 2020 headcount
.......
Social services, community and
center-based interventions
Department of Social Services
Along with the public school system
and the county health department,
Mecklenburg County also provides
assistance to families of children with
special needs through the Department
of Social Services. DSS caseworkers
help families apply for federal assistance
through Medicaid or the Children’s
Health Insurance Program (referred to
as NC Health Choice in our state).
A division of DSS, Youth and Family
Services serves families whose children’s
health, welfare and safety are at risk.
Also known as “protective services,” YFS
investigates reports of child abuse and
neglect from the medical community,
law enforcement, the school system, a
relative or neighbor, or anyone in the
community-at-large. When and if family
interventions fail, children may be
taken into legal custody. Being placed
in YFS’s custody automatically qualifies
children to receive Medicaid.
Of the 592 children in custody prior to
Covid-19, nearly one-third (187) were
under age 5.
YFS is required to refer children under
age 5 who have been substantiated
as abused, neglected, or at high-risk,
or otherwise found to be in need of
services, to either the Infant-Toddler
Program or CMARC depending on the
child’s age. Referrals from YFS to these
two agencies combined have increased
by 43% over the last two years.
Community agencies/
specialized therapies
Charlotte-Mecklenburg has a wealth of
community agencies providing behavioral
health and specialized therapies,
screenings, assessments, evaluations,
and early intervention services. One
of the most common interventions for
children under the age of 5 with special
needs is speech therapy. Physical therapy,
occupational therapy and community-based
rehabilitative services are also
widely utilized.
Community agencies or service
providers receive referrals from other
agencies as well as social workers, care
coordinators, case managers and family
navigators. CMS, CDSA and Cardinal
all have formal networks of providers,
and other agencies maintain informal
lists to assist families with referrals, yet
there is no comprehensive local database
accessible to parents of children with
special needs. Instead they learn about
services at Child Find events or through
their pediatrician, word of mouth, social
media, or referrals.
One of the largest local agencies,
Charlotte Speech and Hearing Center,
was founded in 1967 by the Junior
League of Charlotte. CSHC was the
first community speech and hearing
center in North Carolina and is the only
free-standing, nonprofit speech and
hearing center in the state.
Another of the largest local agencies,
Thompson Child & Family Focus, was
founded as an orphanage in 1886. The
nonprofit organization runs a child development
center, a family services center,
early childhood outreach programs,
a psychiatric residential treatment facility,
and a community counseling center.
Polliwog
Thompson also manages a behavior
intervention program called Polliwog.
The program serves children from birth
to age 5 whose mental health challenges
negatively affect their placement in an
early childhood program. (Traditionally
it has also provided speech, occupational
and physical therapies to children
whose needs aren’t severe enough to
qualify for the Infant-Toddler Program
or Programs for Exceptional Children,
but those specialized therapies were
phased out in 2020.) Polliwog’s five
behavior intervention specialists provide
therapy to children, and training and
technical assistance to parents, caregivers
and early childhood educators.
Polliwog receives all of its funding from
Smart Start (about $375,000 for this
fiscal year).
Child care centers
Child care centers are licensed by the
state; subsidized by federal, state, county
and local programs; and, in general,
are operated as for-profit businesses.
Also known as “day care,” child care
facilities are regulated by the state
Division of Child Development and
Early Education to ensure they meet
minimum standards. A division of the
state Department of Health and Human
Services, DCDEE evaluates each center
via a five-star quality rating system for
staff education and program standards.
Working families of children with
special needs rely on child care centers
to provide a setting conducive to early
intervention services and specialized
therapies. Often parents’ work schedules
coincide with clinicians’ business hours,
so service providers will travel to the
centers to provide therapy and conduct
screenings, assessments and evaluations.
Child Care Resources Inc.
Child Care Resources Inc. is the administrator
of child care subsidies for
Mecklenburg and four other counties
in North Carolina. CCRI provides
information to parents to help them
choose quality child care through Child
Care Search. The placement program
is funded by the state, United Way of
Central Carolinas, and Smart Start.
CCRI’s staff of more than 100 professionals
provides training and technical
assistance to child care centers and early
educators; it is a sponsor of the Child
and Adult Care Food Program; and
it collaborates with CMS to prepare
children for kindergarten.
Special-needs kids are mainstreamed
into day-care programs alongside children
who don’t have special needs, so
choosing a child care center appropriate
to the child is often a challenge. And
because child care tuition for infants,
toddlers and preschoolers can be as
expensive as tuition at a state university,
parents may need financial help as well.
Early Head Start
CCRI is also one of only two Early
Head Start grantees in the county, along
with the Alliance Center for Education
(formerly the Bethlehem Center). The
N.C. Early Head Start program for
pregnant women, infants and toddlers
works to ensure healthy prenatal
outcomes and to provide high-quality
day care, as well as health and mental
health services for children up to age 3.
Early Head Start is a federally funded
program for low-income families that
offers center- and home-based services.
As part of its federal mandate, a minimum
of 10% of children enrolled must
be diagnosed with a disability.
CCRI manages the Early Head Start/
Child Care Partnership. Five local
centers offer services ranging from fulltime,
year-round day care at three- and
four-star-rated facilities, to screenings
and referrals, to frequent assessments
of growth and early development, to
early childhood education. Last year, the
partnership provided Early Head Start
curriculum to 108 local kids.
.......
Interventions for preschoolers
Head Start
Head Start is analogous to the elder
sibling of Early Head Start. While Head
Start was launched in 1965 as part of
President Lyndon Johnson’s Great
Society, Early Head Start was created
in 1994 as an outgrowth of the original
federal program. And whereas Early
Head Start is for pregnant mothers and
children from birth to age 3, Head Start
is for children ages 3 to 5.
The Alliance Center for Education is
the sole grantee for Head Start in Charlotte-Mecklenburg.
AC4Ed provides
high-quality educational services to over
800 children each day. The center has
12 locations throughout Mecklenburg
County; four offer Early Head Start,
and six provide Head Start.
Bright Beginnings
Bright Beginnings is a federally funded
preschool program for 4-year-olds who
demonstrate a need for educational
interventions. Most Bright Beginnings
students don’t have an IEP because they
don’t meet the eligibility requirements.
Others do qualify for an IEP but don’t
require the intensive services provided
in a self-contained classroom. Bright
Beginnings classrooms are located in
select elementary schools rather than
child care facilities.
Bright Beginnings serves 3,240 students
in 53 public schools. Eligibility
for participation is determined through
a screening process, which includes
administration of the Brigance Early
Childhood Screening, an observation
during the screening, and parental interviews.
Children who demonstrate the
greatest need are placed first.
NC Pre-K
NC Pre-K is funded by the state, including
some funding from Smart Start.
Every county administers the preschool
program differently; in Charlotte-Mecklenburg,
CMS administers NC Pre-K
for 4-year-olds whose families have low
income. Classrooms are located in 31
child care facilities.
22
23

M E E T R I C K Y & I S A I A H
J
essica Simpson knows the sacrifices she makes for
her two boys, Ricky, 3, and Isaiah, 5, are essential to
their future well-being. She knows how important it is for
them to receive the early interventions she coordinates with
five different clinics, even when it means spending 15-plus
hours a week in Charlotte traffic.
Ricky and Isaiah have been diagnosed with moderate
to severe autism and are considered nonverbal. Ricky tries
to mimic words, and Isaiah has recently begun to string
together short phrases, such as “open please” and “all
done.” They each receive one-to-one occupational and
speech therapy, and together they participate in ABA
therapy for up to 24 hours a week.
Although Jessica’s first pregnancy was mostly troublefree,
Isaiah was born with hereditary elliptocytosis, a blood
disorder which can cause a mild anemia. And giving birth
made Jessica terribly ill. A few months later, she was diagnosed
with multiple sclerosis. Yet, even in the brain fog of
her debilitating illness, she noticed behaviors in Isaiah that
didn’t seem quite right.
“Around 8 months, I began to notice some of the things
he was doing, like waving and stuff like that, he stopped
doing,” she said. “He stopped making eye contact, too, and
he just wasn’t saying anything, not even babbling.”
Isaiah’s hematologist suggested having him evaluated
by a developmental pediatrician, and soon after the family
began receiving services from CDSA. He was diagnosed
with autism at age 2½.
Now, with two kids on the spectrum, virtually all of
Jessica’s time is spent taking care of her children. The
boys’ high energy and limited communication make things
especially challenging when her MS flares up—days when
24
Photos by Jessica Simpson
she has to lock the doors, lay on the sofa, “and just hope
they don’t burn down the house.”
“My kids are runners. They like to escape the house to
the point that I have GPS trackers on them,” she said. “So
I have to always be hyper-alert with them because if I fall
asleep, they could get out. I can’t spend too much time in
the bathroom. I can’t take a shower unless they’re asleep.”
Despite the challenges of rearing young children with
special health care needs, the former teacher and
super-mom is proud of her two sons. “Isaiah’s really into
technology, so he loves iPhones and iPads and computers
—anything involving that and video games,” she said.
“Ricky likes being outside and loves animals and bugs. He
loves to run and kick the soccer ball. I feel like he’s meant
to be a soccer player.”
Jessica’s kids are also enthusiastic about school. Ricky
goes to a preschool in the Exceptional Children’s program
at CMS, and he loves looking at books. Isaiah enjoys math,
and he attends a charter elementary school founded by
UNC-Charlotte called Niner University Elementary.
Just like most kids, the Covid-19 pandemic interrupted
their schooling, but they also missed the personal attention
they receive from their therapists. “They went a month-anda-half
with no in-person services. I could see the regression
during that time,” Jessica said.
Another unfortunate consequence of Covid-19 was that
all three family members contracted the virus. The clinic
where the boys receive one of their therapies temporarily
closed, and its therapists began going into patients’ homes.
For Jessica, that meant spending seven hours a day in her
bedroom since she was required to be at home yet couldn’t
be present for the sessions.
In early October, Ricky came down with a fever, and
Jessica lost her sense of taste and smell. Both Jessica and
Isaiah (who never developed symptoms) tested positive.
Ricky tested negative at first, but a few days later a second
test confirmed that he, too, had the virus.
One month later, the clinic informed Jessica that the
therapist who’d been coming into their home had tested
positive for Covid-19 back in late September. This was news
to Jessica.
“She brought it into our home for three consecutive
days,” she said, “and she knew she was positive.”
Looking back on the family’s recent ordeal, Jessica
summed it up stoically: “I told the therapist, ‘I’m not mad at
you. We got it, we survived, and it was okay.’”
In fact, what bothered her more than catching the virus
was that her kids missed more school and in-person therapy
because they had to self-quarantine for nearly a month.
“I know how important early intervention is,” she said.
“So I know the more time I dedicate now, the better off
they’ll be as they grow older.”
NC Pre-K serves 1,482 children, and
eligibility is based on family size, gross
income, and other qualifying indicators.
The program is included here due to
the inclusion of the phrase “at risk” in
the definition of children with special
health care needs, because research
has shown children from low-income
households are at risk of having or developing
chronic physical, developmental,
behavioral or emotional conditions.
MECK Pre-K
MECK Pre-K is a county-funded
program administered by Smart Start
that offers free pre-kindergarten to
4-year-olds. It was created to fill a gap
in preschool services for families whose
income doesn’t meet the threshold for
NC Pre-K. Although MECK Pre-K
doesn’t specifically serve children with
special needs, a family support specialist
makes referrals to Thompson Child &
Family Focus and the program partners
with CMS to provide support to
families of children with special needs.
Due to Covid-19, its current enrollment
is 801 children, who are taught in 89
classrooms in 41 child care facilities.
.......
Behavioral health services
Cardinal Innovations Healthcare
The outer ring of the system of care
for 3- and 4-year-olds is occupied by
Cardinal Innovations Healthcare and its
local provider network. Cardinal is the
managed care organization for Medicaid
for behavioral health services for
residents of Mecklenburg and 19 other
counties in North Carolina.
Cardinal isn’t a significant player in the
system of care for birth to 3 because
the MCOs have no statutorily defined
responsibility to provide mental health
services to this age group. However,
Cardinal may get involved if the child
has an intellectual or developmental
disability by putting them on a wait
list—officially called the Registry of
Unmet Needs—for the NC Innovations
Waiver through Medicaid. Due to the
limited number of slots, it can take up
to 10 years to receive a waiver.
The Innovations Waiver provides community-
and home-based services and
supports to children with intellectual or
developmental disabilities so they can
live outside of an institution or assisted
living facility. The waivers provide up to
$135,000 per child per year to pay for
equipment and supplies and cover the
cost of services such as home modifications,
residential and day supports,
respite, specialized consultation, crisis
services, training, community navigator,
financial management, and home and
community supports. The number of
slots is based on county population, yet
there aren’t enough slots to meet the
demand.
“This waiver has a wait list due to limited
Medicaid funds. We are required to
keep the waiver wait list for our counties,
but only the state government has
the power to approve new or additional
spaces,” said a Cardinal project manager.
“We know this is frustrating.”
As families wait to receive a waiver, they
make do with Medicaid (b)(3) services,
which are not as extensive. They include
in-home skill building, respite, and
community guide. And (b)(3) services
may be available to children with mental
health diagnoses other than intellectual
and developmental disability.
Cardinal also manages mental health
services covered by the state for families
who don’t qualify for Medicaid, including
diagnostic assessment, group living
and family living.
CARDINAL ON ITS WAY OUT?
In late November, the Charlotte
Observer reported that Mecklenburg
County intended to fire
Cardinal Innovations Healthcare.
In addition to five other counties
in Cardinal’s 20-county
footprint, Mecklenburg was
in the process of filing a formal
request with the state Department
of Health and Human
Services to end its relationship
with Cardinal. Cardinal is one
of seven managed care organizations
(MCOs) that serve the
state’s poorest residents.
At issue was the quality of
services Cardinal provides to
people with behavioral health
needs, especially children placed
in foster care. A precursor to
this report, Navigating the Maze
documented the 10 most common
complaints about Cardinal’s
administration of Medicaid
funds and included the MCO’s
responses.
Cardinal’s troubles with Mecklenburg
County date back to at
least 2017, when state auditors
accused the organization of
irresponsible fiscal management.
Cardinal fired and
subsequently sued its CEO, and
the state briefly took control of
Cardinal to affect a reorganization
and designate a new board.
In early 2020, county commissioners
held two public forums
to air their ongoing issues with
Cardinal and to give the MCO a
chance to respond.
25

RECOMMENDATIONS
Gaps in services, barriers to access
Qualitative data from interviews
with nearly three dozen local experts
in health care and early childhood
education suggest the following gaps in
services and barriers to accessing services
exist within the local systems of care for
children with special needs:
3
Social determinants of health—low
income, unstable housing, unsafe
neighborhoods, lack of transportation,
food scarcity, substandard education,
and so on—create disproportionality in
certain racial and ethnic populations.
Intergenerational poverty resulting from
centuries of racism creates environments
permeated with toxic stress, which in
turn affects early brain development.
From birth to age 5 is a time of extraordinary
cognitive, emotional and
social development. Too often parents
are confronting the urgent demands of
surviving day-to-day, especially during
Covid-19, which can impact their
ability to provide the care and attention
children need to optimize their development.
3
The Adverse Childhood Experiences
(ACE) study has demonstrated that
childhood trauma tends to follow individuals
into adulthood. Adults who experience
significant trauma as children
are more likely to suffer from chronic
disease and mental health disorders.
3
One of the social determinants of health
in particular—transportation—was
frequently mentioned in interviews as a
barrier to access, especially for families
whose work schedules coincide with
therapists’ availability. Appropriately,
94% of the services provided by CDSA
in 2019 were home-based.
3 3
Also related to social determinants are Besides eligibility definitions, lack
the need for trauma-informed care, of funding creates gaps in services
which involves understanding, recognizing,
and responding to the effects of all institutional and individual levels. Just
and barriers to access—both at the
types of trauma, and the need for more as a family with Medicaid may not be
interpreters for families who don’t speak able to afford a car to drive their kids
English as their primary language. to a child care center, a middle-class
3
family may not be able to pay for the
Perhaps the “first runner-up” to social high deductibles and co-pays that
determinants as a primary factor in gaps typically come with commercial health
and barriers is the necessity of defining insurance.
eligibility: The definitions themselves
3
create gaps. One example is infants and
toddlers who demonstrate a developmental
delay of less than 30% in one
area, or less than 25% in two or more
areas. These kids fall short of the criteria
for enrollment in the Infant-Toddler
Program and may not have an alternate
payer source to seek services elsewhere.
3
Another example is the drop-off from
Part C of IDEA to Part B. Antidotal
evidence suggests a significant number
of 3-year-olds don’t make the transition
from the Infant-Toddler Program to
preschool special education. Whether
they didn’t qualify for Part B because
the state’s criterion is so much more
restrictive or because their developmental
delays had been effectively
eliminated (or significantly reduced) by
early interventions seems to be anyone’s
guess. Other factors, such as reportedly
long wait lists for receiving an evaluation
from CMS and the stigma of
having a special-ed child, may also be at
play. And CMS staff say they frequently
struggle with getting parents to return
phone calls and participate in evaluations.
If parents are struggling with
poverty, returning a call to discuss their
children’s evaluation may not receive the
attention it deserves.
Examples of institutional funding
shortages abound during the Year
of the Virus. As previously noted,
Polliwog is a program fully funded
by Smart Start and created to serve
children who are ineligible to receive
specialized therapies through CDSA or
CMS, or whose behavioral challenges
prevent them from enrolling in an early
childhood program. As such, it was
created to fill gaps in services. However,
budget cuts for the 2020-2021 fiscal
year translated into a refocusing of
Polliwog: Behavioral therapy through
Thompson remains intact while occupational,
physical and speech therapy
were eliminated. Before Covid-19, the
three specialized therapy providers that
had been collaborating with Polliwog
were working with affected families to
try to find alternate funding or offer
them discounted services.
3
Limited institutional funding also
creates long wait lists for services. The
N.C. Innovations Waiver through
Medicaid has a delay of up to 10 years.
And the wait for ABA therapy for kids
on the autism spectrum is said to be as
long as 10 to 15 months. Since early
intervention is so critical to reaching
developmental milestones, a significant
wait list to receive an evaluation—or a
delay in beginning therapy—can have
a ripple effect throughout the first five
years and potentially even longer.
Why Smart Start?
Smart Start of Mecklenburg County was one of 18 counties in North Carolina to
pioneer a new program created in 1993 by the General Assembly. By 1997, Smart
Start had expanded to all 100 counties through a network of 75 local partnerships.
In Charlotte-Mecklenburg, Smart Start administers more than $30 million annually
in state, county and private funds to programs serving children under age 5 and
their families and caregivers.
As a nonprofit organization whose mission is to improve early childhood health,
education and development, and to ensure children are prepared for kindergarten,
Smart Start is uniquely positioned to fill gaps in services and eliminate barriers to
access for families of children with special needs.
Smart Start of Mecklenburg County partners with 13 local agencies to fund two
dozen local programs. In terms of services for families of children with special
needs, Smart Start currently provides funding to the Early Childhood Intervention
program at Novant Health; the Polliwog project at Thompson Child & Family
Focus; parent education, early intervention and social support through Charlotte
Speech and Hearing Center; behavioral therapy at Safe Alliance; child care subsidies
administered through Child Care Resources Inc.; home visiting services; and several
preschool and child development programs. In addition, Smart Start administers
the MECK Pre-K program for preschoolers aged 4.
As an in-house program, Smart Start offers Guiding Parents to Services,
a free program for parents with children under age 5 who have been
diagnosed with Autism Spectrum Disorder. Other in-house programs
supporting all parents include the free-book program Dolly Parton
Imagination Library and The Basics Mecklenburg, an early brain
development campaign.
North Carolina is recognized nationally as a leader in early childhood health and
development in large measure due to Smart Start. Smart Start of Mecklenburg
County is staffed by highly experienced, passionate professionals with expertise
ranging from strategic business management to community engagement to early
childhood education. Our volunteer board of directors includes elected officials and
distinguished leaders from the health, finance, marketing, human resources, academic,
political, literacy, fundraising, legal, and early/special education professions.
As an organization with a long-standing bond to our community, Smart Start has
much to be proud of. Yet we know we can do so much more for the families who
most need our help: families who have children with special health care needs. We
not only can invest in local organizations to expand existing services, we can also
create new programs to fill gaps in the current systems of care. And we can serve
as a thought leader, convening groups of stakeholders to translate our suggestions
for improvement into a concrete action plan. We believe the solutions to systemic
problems can be found within the community itself, and we are committed to
beginning a constructive dialog with the goal of taming the octopus.
26
27

Suggestions for improving the system
Acknowledgments
Smart Start is concerned with ensuring
a connected, equitable system of care for
families of children with special needs,
which requires a focus on supporting
our community partners, engaging
parents, enhancing the capacity of the
current system and considering the
addition of new frameworks or interventions.
Smart Start should consider
the following recommendations:
Explore innovative, crosssector
alternatives to address-
1
ing children’s health and
well-being, such as pediatric accountable
health communities (AHCs), a
collaborative model that integrates
care across health and social service
sectors. Fund service coordinators or
navigators who would be embedded in
pediatric practices or primary care clinics,
in order to link children to behavioral
health and specialized services. The
coordination of the screening, referrals
and interventions would reduce disparities
and ensure a structure of support
and continuity of care. A collaborative
system of care for social-emotional,
behavioral and developmental concerns
is beneficial not just for children with
special health needs, but for all children.
Increase the availability of
home visiting programs for
pregnant women and new
mothers. Recent studies indicate that
in North Carolina less than 1% of vulnerable
mothers receive home visiting—
despite evidence that these types of
interventions should be an integral part
of a larger early childhood system. In
2015, a study commissioned by Smart
Start recommended the local implementation
of Child First, a national,
evidence-based home visiting model
serving children with emotional/behavioral
or developmental/learning problems.
Child First recently merged with
Nurse-Family Partnership, expanding
the level of support available to families
with a special needs child.
2 4
To maximize Child Find
3 activities and support community
partners, explore the
feasibility of combining Zfive and
the Local Interagency Coordinating
Council into a joint resource with the
addition of paid staff funded by Smart
Start. There is considerable overlap in
membership between the two groups,
and both share common goals, including
a focus on children from birth to
age 5 and participation in Child Find
activities. Yet, participation in both
organizations is said to ebb and flow;
having a paid staff member responsible
for guiding the merger and ensuring
its effectiveness may be a solution. The
synergy created from a potential merger
of Zfive and the LICC could translate
into a more rigorous system of parent
education and community-based screenings,
likely resulting in reaching those
who remain outside the ecosystem.
Create a strong bridge of
engagement with families
to facilitate a parent-toparent
support system. Parents of
children with special health care
needs can experience crippling social
isolation, and research has shown
that the two most valuable sources
of support for these families are
information and peer support. The
significance of the role of the family
is part of federal policy in the Developmental
Disabilities Assistance and
Bill of Rights Act, which includes
the “family support goals of enabling
families to nurture and enjoy their
children at home, and preserving,
strengthening, and maintaining the
family.” Statewide, we have programmatic
supports, training and resources
from UNC- Chapel Hill’s School
of Social Work Family Support
Program and The Family Support
Network of North Carolina. They
provide a parent-to-parent framework
of which Mecklenburg County
has one affiliate, Trusted Parents.
In addition, Smart Start’s Guiding
Parents to Services offers Circle of
Parents Autism for families. Planning
and expansion of parent-toparent
evidence-based models is a
critical need, but an even larger need
is the inclusion of parents’ voices.
Provide support to the two
5 primary service providers,
CDSA and CMS. What can
Smart Start offer to support their
work? One suggestion is funding
support staff for parent navigation and
for additional staff at CMS to screen
3-year-olds. A system of support and
tracking for preschool-aged children
who receive Part C Transition Services
would determine how many actually
enroll in Programs for Exceptional Children—and
how many do not. Coupled
with strong community partners, such
as CMARC, a navigator would follow
up with families whose children don’t
successfully transition in order to establish
a matrix of causation. Informed
by quantitative and qualitative data,
a navigation model would then be
developed and implemented to ensure
that children who are eligible to enroll
in special-education preschool programs
receive every opportunity to do so.
Build and maintain a central
6 directory of services and
supports to anchor parents
and providers. The directory would
1) disseminate information regarding
early childhood developmental milestones,
2) provide the opportunity to complete
the Ages and Stages Questionnaire,
and
3) raise awareness of services and supports
available locally.
Thanks to all the families, health providers and family-services professionals who
participated in this study. Their assistance ranged from making a connection, to
meeting with the author in person, to participating in telephone interviews, to
providing data, to fact-checking portions of the report.
Special thanks to Jennifer Stamp, Amy DeShazo, Amber Pierce, Dr. James
Cook, Lisa Cloninger, Monique Luckey, Dr. Diana Moser-Burg and Dr.
Ariana Shahinfar. We also would like to acknowledge the following individuals:
James Appler
Jaimelee Behrendt-Mihalski
Dr. Christina Bethell
Philip Bisoondial
Charles Bradley
Lawrence Brewton
Daniel Brown
Nikia Bye
Doreen Byrd
Judith Carter
Dr. Michelle Chiu
Aimee Combs
Jenny Dandison
Ashley Dauenhauer
Glennis Davis
Mike Davis
Mark Eberhardt
Dr. John Ellis
Robbie Flynn
Ximena Franco
Andrew Gadaire
Timothy Gibbons
Tamikia Greene
Jennifer Harlow
Tracy Hickman
Anthony Howell
Dr. Kendra Jackson
Elaine Jenkins
Heather Johnson
Elizabeth Kabalka
Joanna Kay
Nora King
Tammy King
Stephanie Klitsch
Sherry Kornfeld
Alison Kuznitz
Lennie Latham
Rachelle Lawrie
Siera Lindo
Khrysys Mason
Dr. Kamilah McKissick
Dr. Shivani Mehta
Laura Melton
Jessica Montana
Carol Morris
Caché Owens-Velásquez
Pilar Pérez
Romona Poblete
Candace Richter
Angie Rikard
Asia Riviere
Lisa Sammons
Betsy Short
Jessica Simpson
Joanna Smith
Michele Sullivan
Emily Tamilin
Diana Torres
Shannon Tucker
Whitney Tucker
Banu Valladares
Dr. Morgan Walls
Stephanie Watts
Laura Weber
Dietrick Williams
Candace Wilson
Elizabeth Star Winer
Each Child.
Every Neighborhood.
Smart Start of Mecklenburg County
smartstartofmeck.org
(704) 377-6588
601 E. 5th Street, Suite 500
Charlotte, NC 28202
28
29

Physical therapy
Behavioral intervention
Occupational therapy
Speech therapy
APPENDIX 1: PARENT SURVEY
D
uring the summer of 2020, Smart Start of Mecklenburg
County staff conducted an online survey of
parents of children with special health care needs, birth
through age 5. The survey gave participating parents an
opportunity to voice their opinions about how to improve
the services their families receive, and their input contributed
to our suggestions for improving the system on pages 28-29.
Parents were asked a total of 30 questions intended to help
DEMOGRAPHICS
Survey responses included a wide
range of conditions with the two most
prevalent being developmental delay
and autism. Over 90% of respondents
indicated their child currently has the
condition. The majority were mothers
(89%), and more grandparents (6%)
than fathers (4%) were represented in
the survey. Nearly 80% of parents who
completed the study reside to the west
or north of uptown Charlotte.
How old was
your child when
he or she was
diagnosed?
s 13%
s 26%
s 46%
s 11%
s 4%
50
2
43
2 340 1
How old is
your child
now?
s 2%
s 9%
s 34%
s 36%
s 19%
17.7%
15.5%
4.4%
6.6%
RACE/
ETHNICITY
s African American
s Asian
s Hispanic/Latinx
s White
s Two or more races
Smart Start form a more complete picture of the population
in terms of demographics; the therapies, care coordination
and child care their children receive; issues related to employment
and insurance; and how their families are adapting to
Covid-19. The following pages contain a summary of the
survey responses. A total of 61 parents participated in the survey,
which was made available in English and Spanish. Survey
responses were collected between August 15 and October 4.
55.5%
Has a doctor or health
professional ever told
you your child has any
of the following?
8.8%
17.7%
22.2%
4.4%
HOUSEHOLD
INCOME
13.3%
s Under $15,000
s $15,000 to $29,999
s $30,000 to $49,999
s $50,000 to $74,999
s $75,000 to $99,999
s $100,000 to $150,000
s Over $150,000
Cerebral palsy 0%
Down syndrome 0%
Spina bifida 0%
Tourette syndrome 0%
Brain injury 0%
Bone, joint or muscular disorders
Epilepsy or seizure disorder
Anxiety disorder
Visual impairment
Hearing loss
Neonatal conditions
Intellectual disability
Congenital anomaly/genetic disorders
Attention deficit hyperactivity disorder
Behavioral challenges
Autism or pervasive developmental disorder
Developmental delay
13.3%
20%
1.8%
1.8%
1.8%
3.7%
3.7%
5.6%
5.6%
5.6%
15%
16.9%
64.1%
71.6%
TREATMENT & SERVICES
Nearly one-third of the 30 questions
parents were asked concerned the type
and quality of therapeutic treatments
and other services received.
Three-quarters of respondents
indicated their child receives therapy
for their special health care needs. For
parents who received more than one
service, 21% indicated they received
help arranging or coordinating care
among different doctors or service
providers.
Parents were fairly even divided on
the question, “Do your child’s doctors
or other health care providers need to
communicate with his or her child care
providers, school or other programs?”
with 37% responding “no,” 35% “yes,”
and 27% “not sure.”
I don’t have transportation
The provider was
out-of-network
The provider was
too far away or not
convenient
32%
The provider didn’t accept
my health insurance
25%
36%
16%
11%
26%
15%
RANK THE LEVEL OF
DIFFICULTY YOU HAVE
ARRANGING YOUR
CHILD’S SERVICES
22%
13%
59%
s Easy
s Difficult
s Neither easy
nor difficult
HOW OFTEN ARE YOU
FRUSTRATED WITH
YOUR CHILD’S THERAPY
OR SERVICES?
s None at all
s A little
s A moderate amount
s A lot
s A great deal
OBSTACLES TO
RECEIVING SERVICES
46%
27%
22%
46%
‘We need more
people with empathy,
kindness and love
for what they do.
I have been lucky
enough to find angels
on my road who have
been guiding me and
helping my son.’
What types of
specialized
therapies
does your
child
receive?
I work during the
provider’s office
hours
Getting referrals
for services was
difficult
18%42%60%80%
30
31

‘It’d be easier if I had
someone to help me get
all the services my child
can access. And if it’s in
my language, it’d be
wonderful.’
INSURANCE & EMPLOYMENT
Respondents were evenly divided on the
question, “During the past year, did you
or anyone in your family have to quit a
job, not take a job, or drastically change
your job due to problems with your
child’s care?” More than three-fourths
indicated that their child’s health
insurance covered services that met
their child’s needs.
32
If yes,*
select
the type
of care
40%
DOES YOUR CHILD
RECEIVE CARE FOR
AT LEAST 10 HOURS
PER WEEK FROM
SOMEONE NOT
RELATED TO YOU?*
60%
s Yes
s No
‘I just wish I had more options to pay for services.
I’ve tried to get additional assistance because insurance
doesn’t cover everything. However, I’ve
been unsuccessful.’
27%
11%
7%
DOES HEALTH
INSURANCE ALLOW
YOUR CHILD TO
RECEIVE TREATMENT
FROM THE PROVIDERS
HE OR SHE NEEDS?
55%
s No
s Yes
s Yes but limited benefits/visits
s Yes but services not available
CHILD CARE
Parents of children with special health
care needs often face extraordinary
challenges finding child care centers
that meet their children’s needs—as well
as keeping them enrolled. Four survey
questions centered on this issue.
The majority of parents surveyed
(60%) said the child care setting they
chose specifically stated that the center’s
staff is trained to work with children
with special needs; 14% of respondents
said their child had ever been removed
from a child care setting.
Nanny or au pair
Family child care home
Half-day preschool
Head Start
Other nonrelative
Preschool
Child care center
0%
4.1%
8.3%
8.3%
16.6%
29.1%
45.8%
‘I moved from full-time
employment to part-time to
take my child to multiple
appointments every week
and manage at-home
behavioral training.’
57%
2%
WHAT TYPE OF HEALTH
INSURANCE DOES
YOUR CHILD HAVE?
s Medicaid
s Private insurance
s Children’s Health
Insurance Program
41%
COVID-19
The global pandemic’s impact on
families of special needs kids is likely far
more significant due to several factors.
For children with complex medical
conditions, their vulnerability to the
virus is especially concerning. Even for
a child with a less severe situation, such
as a mild developmental delay, missing
out on therapeutic services and other
interventions for weeks or months could
have lasting effects. And since families
rely on child care centers, preschool
programs and other supports to be able
to work or have respite, the shutdown
has had a ripple effect.
The health care professionals
interviewed for this report seemed to
be doing their very best to adapt: Most
provided sessions online or offered other
virtual accommodations. However, for
young children with short attention
spans, learning online is a poor substitute
for in-person instruction.
Covid-19 affected the research methodolgy
and timing of this report as well.
Plans to convene a large gathering of
How has Covid-19 impacted your child’s access to services?
We had a one-month break
in services at the start of
lockdown. Also, some services
have gone to telehealth, which
does have challenges for my
preschooler.
There was a delay with continuing speech therapy.
Speech is virtual now and
less engaging. OT was
stopped completely for
several months.
CMS is very delayed in
evaluating my son for an
IEP and getting services;
insurance is taking a long
time to approve new therapy.
The schools will not let
the therapist in and my
son is suffering.
In person SLP services suspended
and insurance did not cover
virtual services. Currently receiving
SLP though exceptional
children’s Pre-K.
Reduction in quality of
appointments due to
virtual visits.
It’s all
virtual now.
parents for face-to-face interviews and
a group brainstorming session to gather
ideas for improving the system had to
be scrapped for safety concerns. The
parent survey was Smart Start’s solution
to the unfortunately but necessary
cancellation.
When parents were asked, “Has
Covid-19 impacted your child’s access
to services?”, less than one-third
answered “no.” Those who answered
“yes” were asked to elaborate; a selection
of their answers are represented below.
My child cannot sit
for virtual lessons.
ABA therapy was cancelled; preschool was closed.
IEP evaluation has been
delayed so we are unable to
access services provided by
the school district.
At first therapy was remote. Now we have
been able to bring our child to the clinic
to receive therapy.
OT is unable to go to daycare during
the pandemic, and there is a shortage
of specialists seeing David in person.
He would not benefit from telehealth.
Services are done virtually and my
child is not able to sit for them.
Online therapy is
not as effective for
my child.
Speech therapist has been awesome about
transitioning her weekly sessions from
in-person to virtual.
Therapists have either resigned or services were cut by the provider, and I had to reduce
my son’s hours. The therapists could no longer enter the daycare facility due to Covid.
33

APPENDIX 2: PROVIDER NETWORKS
CHILDREN’S DEVELOPMENTAL SERVICES AGENCY PROVIDER NETWORK
The Mecklenburg CDSA administers the Infant-Toddler Program for families with children under age 3 who are experiencing
a delay in one or more areas of cognitive, physical, communication, social-emotional, or adaptive development—or who have
been diagnosed with a condition that has a high probability of resulting in a developmental delay. Its network includes:
l ABC Pediatric Rehab 601 Small Country Ln., Midland, NC 28107 (704) 771-0051
t ACT Speech Therapy 8835 Gladden Hill Ln., Fort Mill, SC 29715 (704) 252-3125
t Articulators Speech Services 8315 Lynnewood Glen Dr., Charlotte, NC 28269 (704) 891-5516
t _ l Carolina Concierge Therapeutics P.O. Box 38118, Charlotte, NC 28273 (704) 654-8599
t Carolina Feeding and Language Institute
10624 Lighthouse Ln., Pineville, NC 28134 (704) 777-5287
t _ l Carolina Pediatric Therapy 9 W. Summit Ave., Asheville, NC 28803 (828) 670-8056
t Carolina Speech Connections P.O. Box 652, Monroe, NC 28111 (704) 233-3434
t Communication Matters 4829 Crownvista Dr., Charlotte, NC 28269 (704) 299-7585
4 t Dreamweavers Unlimited P.O. Box 6035, Gastonia, NC 28056 (704) 868-8551
4 t _ l Early Bird Developmental Services 3007 Simmon Tree Rd., Charlotte, NC 28270 (704) 995-2900
4 Easter Seals 716 Marsh Rd., Charlotte, NC 28209 (704) 522-9912
_ l Family First Physical Therapy 2726 Barringer Dr., Charlotte, NC 28208 (832) 451-0660
t _ l Handprints and Footsteps Pediatric Therapy
8133 Ardrey Kell Rd., Suite 104, Charlotte, NC 28277 (704) 413-0968
_ l HOPE Therapeutics 300 Sutro Forest Dr., Concord,, NC 28027 (703) 501-6366
l Integration Station 8511 Davis Lake Pkwy., Suite C, Charlotte NC 28269 (704) 595-9363
t Leap Pediatric Therapy 2106 Monarda Way, Waxhaw, NC 28173 (978) 420-8850
l Leaps & Bounds P.O. Box 473414, Charlotte, NC 28247 (704) 641-7193
4 Learning Connections Unlimited PO Box 1231, Huntersville, NC 28070 (704) 488-2026
4 Lifespan 1511 Shopton Rd., Suite A, Charlotte, NC 28217 (336) 757-1014
t _ l Life Touch Therapy 2425 Satchel Ln., Concord, NC 28027 (973) 896-4332
v McNiel Family Counseling P.O. Box 680427, Charlotte, NC 28216 (704) 641-4515
_ l Milestone Therapy 1229 Toteros Dr., Waxhaw, NC 28173 (704) 649-4509
t Pediatric Speech and Language Services
P.O. Box 9804, Greensboro, NC 27429 (336) 541-8167
t _ l Pediatric Theraplay Speech Services P.O. Box 480462, Charlotte, NC 28269 (704) 258-1724
t Pioneer Health Group 15129 Oxford Hollow Rd., Huntersville, NC 28078 (704) 288-3432
t SpeakAbility 510 Carpenter Ave., Mooresville, NC 28115 (704) 663-2115
t Speech Center 185 Charlois Blvd., Winston-Salem, NC 27103 (800) 323-3123
t Speech Tactics 8848 Red Oak Blvd., Suite AA, Charlotte, NC 28217 (980) 422-5887
t Speech Techniques 3369 Deal Rd., Mooresville, NC 28115 (980) 875-7112
t Speech Unlimited 905 Tartan Lane, Concord, NC 28027 (704) 794-4028
t Speechworks Therapy Services 3116 Milton Rd., Suite F, Charlotte, NC 28215 (980) 237-6226
_ l Sprout Developmental Services 10200 Oak Pond Cir., Charlotte, NC 28277 (704) 516-3027
_ l Therapy World 1038 Shorthill Ln., Fort Mill, SC 29715 (803) 869-0077
CARE MANAGEMENT FOR AT-RISK CHILDREN INFORMAL PROVIDER NETWORK
Formerly Care Coordination for Children (CC4C), CMARC provides free services to families with children under age 5 who
are at risk for or diagnosed with long-term physical, developmental, behavioral or emotional conditions. CMARC refers families
to the agencies listed below, which constitute an informal provider network.
_ l Brighter Day Theraplay 7950 Nations Ford Rd., Suite B4, Charlotte, NC 28217 (704) 523-7529
t l Carolina Speech and Occupational Therapy
3464 N. Davidson St., Charlotte, NC 28205 (704) 380-0799
t _ l Carolinas Rehab Pediatric Therapy 427 N. Wendover Rd., Charlotte, NC 28204 (704) 304-0620
t Charlotte Speech and Hearing Center 741 Kennilworth Ave., Suite 100, Charlotte, NC 28134 (704) 523-8027
t _ l Child and Family Development 4012 Park Rd., Suite 200, Charlotte, NC 28209 (704) 332-4834
t _ l Crossway Pediatric Therapy 9129 Monroe Rd., Charlotte, NC 28270 (704) 847-3911
t _ l Early Bird Developmental Services 3007 Simmon Tree Rd., Charlotte, NC 28270 (704) 995-2900
t _ l First Steps Pediatric Therapy 2711 Randolph Rd., Charlotte, NC 28207 (704) 256-4281
t Kidspeak Speech and Language Services
8430 University Executive Park Dr., Suite 670, Charlotte, NC 28262
(980) 585-1793
t _ l Life Touch Therapy 2425 Satchel Ln., Concord, NC 28027 (973) 896-4332
t _ l Pediatric Boulevard 2814 Grayfox Rd., Indian Trail, NC 28079 (704) 821-0568
t _ l Pediatric Theraplay Speech Services P.O. Box 480462, Charlotte, NC 28269 (704) 258-1724
t The Speech Garden Institute 1235 East Blvd., Suite 140, Charlotte, NC 28203 (704) 609-8255
t Speech Tactics 8848 Red Oak Blvd., Suite AA, Charlotte, NC 28217 (980) 422-5887
t Speechwise 3315 Springbank Ln., Suite 206, Charlotte, NC 28226 (704) 847-0186
_ l Sprout Developmental Services 10200 Oak Pond Cir., Charlotte, NC 28277 (704) 516-3027
t Starfish Therapy 7631 Buckland Rd., Charlotte, NC 28278 (704) 604-7761
_ l Touchstone Therapy 561 N. Polk St., Pineville, NC 28134 (704) 889-7828
CMARC provider network services include but are not limited to:
t Speech therapy is the therapeutic treatment of impairments and disorders of speech, voice, language, communication, and
swallowing.
_ Physical therapy is for the preservation, enhancement, or restoration of movement and physical function impaired or
threatened by disease, injury, or disability that utilizes therapeutic exercise, physical modalities, assistive devices, and patient
education and training.
l Occupational therapy is based on engagement in meaningful activities of daily life (such as self-care skills, education, work,
or social interaction) especially to enable or encourage participation in such activities despite impairments or limitations in
physical or mental functioning.
Infant-Toddler Services provided by the CDSA network of agencies include:
4 Community-based rehabilitation is a multisectoral approach working to improve the equalization of opportunities and
social inclusion of people with disabilities.
t Speech therapy is the therapeutic treatment of impairments and disorders of speech, voice, language, communication, and
swallowing.
_ Physical therapy is for the preservation, enhancement, or restoration of movement and physical function impaired or
threatened by disease, injury, or disability that utilizes therapeutic exercise, physical modalities, assistive devices, and patient
education and training.
l Occupational therapy is based on engagement in meaningful activities of daily life (such as self-care skills, education, work,
or social interaction) especially to enable or encourage participation in such activities despite impairments or limitations in
physical or mental functioning.
v Family counseling and training.
34
35

CARDINAL INNOVATIONS HEALTHCARE PROVIDER NETWORK: (b)(3) SERVICES
Cardinal administers Medicaid’s (b)(3) services, which are available to children with mental health diagnoses as well as intellectual
and developmental disability. The managed care organization’s (MCO) provider network for these services includes:
n A Small Miracle 7404 Chapel Hill Rd., Raleigh, NC 27607 (919) 751-9089
n Community Specialized Services 15 Spencer Ave. NW, Concord, NC 28025 (704) 795-7600
H Covenant Case Management Services 4410 Laurel Twig Ct., Charlotte, NC 28215 (704) 249-7418
n Developmental Disabilities Resources 6824 Wilgrove Mint Hill Rd., Mint Hill, NC 28227 (704) 573-9777
n : Easter Seals 5171 Glenwood Ave., Raleigh, NC 27612 (919) 783-8898
n H Family First Community Services 3705 Latrobe Dr., Charlotte, NC 28211 (704) 364-3989
H HomeCare Management 315 Wilkesboro Blvd. NE, Lenoir, NC 28645 (828) 754-3665
n H InReach 4530 Park Rd., Charlotte, NC 28209 (704) 536-6661
n Jireh’s Place 615 E. 6th St., Charlotte, NC 28202 (704) 503-9354
n Praising Hands 5501 Executive Center Dr., Charlotte, NC 28212 (980) 207-4317
n S.T.E.P.s Development Academy 8001 Tremont Dr., Indian Trail, NC 28079 (704) 532-5757
n H The Arc of N.C. 11010 David Taylor Blvd., Charlotte, NC 28262 (704) 568-0112
n The Kid’s Workshop 5901 Beatties Ford Rd., Charlotte, NC 28216 (704) 399-4045
Medicaid (b)(3) services include:
n Respite is for the family or guardians of children, teenagers, and young adults up to age 22. It provides a chance for live-in
caregivers to take a break from their caregiving responsibilities.
H Community guide provides support to Medicaid recipients and planning teams that assist recipients in developing social
networks and connections within local communities. Community guide promotes self-determination, increases independence
and enhances the recipient’s ability to interact with and contribute to their local community.
: In-home skill building provides habilitation and skill building to enable the Medicaid recipient to acquire and maintain
skills that support greater independence. It augments the family and natural supports of the recipient and consists of an
array of services that are required to maintain and assist the recipient to live in community settings.
CARDINAL INNOVATIONS HEALTHCARE PROVIDER NETWORK: STATE-FUNDED SERVICES
Cardinal is also the local management entity (LME) for state-funded services provided to North Carolina residents who don’t
qualify for Medicaid. Its provider network for these services includes:
4 Alexander Youth Network 6220 Thermal Rd., Charlotte, NC 28211 (704) 366-8712
4 s Anuvia Prevention and Recovery Center 100 Billingsley Rd., Charlotte, NC 28211 (704) 376-7447
s Autism Services of Mecklenburg County 2211 Executive St., Charlotte, NC 28208 (704) 392-9220
s Community Choices 5800 Executive Center Dr., Charlotte, NC 28212 (704) 227-0607
l CriSys 810 Tyvola Rd., Charlotte, NC28217 (704) 566-3410
6 Developmental Disabilities Resources 6824 Wilgrove Mint Hill Rd., Mint Hill, NC 28227 (704) 573-9777
s 6 Easter Seals 5171 Glenwood Ave., Raleigh, NC 27612 (919) 783-8898
4 Family Preservation Services of N.C. 2300 Sardis Rd. N, Charlotte, NC 28227 (704) 344-0491
4 s Hope Haven 3815 N. Tryon St., Charlotte, NC 28206 (704) 372-8809
s 6 InReach 4530 Park Rd., Charlotte, NC 28209 (704) 536-6661
s LifeSpan 1511 Shopton Rd., Charlotte, NC 28217 (704) 944-5100
s McLeod Addictive Disease Center 515 Clanton Rd., Charlotte, NC 28217 (704) 332-9001
4 s Monarch 350 Pee Dee Ave., Albemarle, NC 28001 (866) 272-7826
s RHA Health Services N.C. 17 Church St., Asheville, NC 28801 (828) 232-6844
s UMAR Services 5350 77 Center Dr., Charlotte, NC 28217 (704) 659-7620
4 Youth Villages 8604 Cliff Cameron Dr., Charlotte, NC 28269 (704) 510-5600
State-funded services include:
4 Diagnostic assessment is an intensive clinical and functional face-to-face evaluation of an individual’s mental health, intellectual
or developmental disability, or substance-use condition. The assessment results in the issuance of a diagnostic assessment
report with a recommendation regarding whether the individual meets benefit plan eligibility criteria.
s Group living is a home-like environment supported by paid staff who help individuals learn new skills, enjoy leisure activities,
and participate in therapeutic programs.
6 Family living means individuals with special needs live with families who provide support and education regarding basic
living and socialization skills.
l Mobile crisis involves all support, services and treatments necessary to provide integrated crisis response, crisis stabilization
interventions, and crisis prevention activities. Services are available 24 hours a day, seven days a week, 365 days a year. Crisis
response provides an immediate evaluation, triage and access to acute mental health, developmental disabilities, or substance
abuse services, treatment, and supports to affect symptom reduction, harm reduction, or to safely transition persons in acute
crises to appropriate crisis stabilization and detoxification supports or services. These services include immediate telephonic
response to assess the crisis and determine the risk, mental status, medical stability, and appropriate response.
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