Taming the Octopus - Executive Summary

EXECUTIVE SUMMARY
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
Smart Start of Mecklenburg County is
the local entity of the North Carolina
Partnership for Children. Established in
1993, NCPC and its 75 local partnerships
across the state share a common
mission to advance a high quality, comprehensive,
accountable system of care
and education for each child beginning
with a healthy birth.
Smart Start of Mecklenburg County
funds programs in three broad categories:
early care and education, health,
and family support and MECK Pre-K.
Among the programs Smart Start funds
are a handful of early intervention
services and kindergarten-readiness programs
specific to children with special
health care needs (CSHCN).
The widely accepted definition of
CSHCN is “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.”
In Charlotte-Mecklenburg, an estimated
7,000 to 12,000 children under age 5
likely meet the definition. Therefore,
developing a better understanding of
the systems of care available to local
families of children who are experiencing
needs and challenges outside the
widely accepted developmental milestones
is crucial to Smart Start’s mission.
(A system of care is an array of effective,
community-based services and supports
for children and their families.)
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 and
funding mechanisms presents unique
challenges for parents. Staying on top
of the bureaucracy is like wrestling an
octopus.
In late 2019, Smart Start commissioned
a community needs assessment of the
ecosystem of services for CSHCN from
birth to age 5. Despite the challenges of
doing research during a pandemic, the
consultant engaged with nearly three
dozen stakeholders, and Smart Start
conducted a parent survey in English
and Spanish.
Children with special needs represent
a range of levels of functional ability:
some are rarely affected while others experience
significant limitations in their
daily lives. As a group, CSHCN cope
with an incredible multitude of conditions
and disabilities and have needs
ranging from educational to medical to
mental health. Their families may also
require social services to impact social
determinants of health such as housing,
transportation, education, employment,
safety and nutrition. And they represent
all racial and ethnic groups, ages, and
family income levels.
Taming the Octopus provides an overview
of services for these families. Emphasis
is placed on the first five years of
life because a majority of children begin
kindergarten at age 5. This subpopulation
is further divided into birth to 3,
and 3 to 5. For birth to 3, determining
whether CSHCN qualify for government-funded
services is based on their
ability to meet early childhood developmental
milestones. For ages 3 to 5,
the criteria shift to medical and mental
health diagnoses.
This demarcation also determines which
local governmental agency is responsible
for serving their needs. For birth to 3,
it’s Children’s Developmental Services
Agency, and for 3 to 5 it’s Charlotte
Mecklenburg Schools. CDSA administers
the Infant-Toddler Program, and
CMS runs Programs for Exceptional
Children. The Infant-Toddler Program
also provides for transition services as
kids “age out” of CDSA and enter the
school system. Both programs fall under
the umbrella of the Individuals with
Disabilities Education Act, a federal law
passed by Congress in 1975.
Beyond the services provided through
IDEA is an informal network of
community and governmental agencies,
child care centers, and preschool
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programs. 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 heart of the ecosystem is the
medical home. Novant Health and
Atrium Health are the two local linchpins
of the medical home. Novant operates
Hemby Children’s Hospital and a
developmental and behavioral pediatric
clinic; Atrium runs Levine Children’s
Hospital and two clinics for developmental
and behavioral pediatrics. Both
hospital systems have neonatal intensive
care units for babies born prematurely
or with birth defects, or who develop an
illness in the maternity ward.
.......
Gaps in services, barriers to access
Because the systems of care for CSHCN
are based on eligibility requirements,
gaps in services exist for families whose
children may meet the definition but
don’t qualify for certain services.
One example is children under age
3 who demonstrate a developmental
delay of less than 30% in one area, or
less than 25% in two or more areas
and therefore don’t qualify for CDSA
services. If the family doesn’t have an
alternate payer source to seek services
elsewhere, the child will likely do
without.
Another example is the drop-off from
CDSA to CMS. A significant number
of 3-year-olds don’t make the transition
to preschool special education. Whether
they didn’t qualify because the school
system’s criteria are more restrictive, or
because their developmental delays had
“Taming the Octopus” includes a map of the systems of care for CSHCN birth to 5.
Download the full report at https://bit.ly/3m4PhmN
already been effectively eliminated or
reduced is 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.
Besides eligibility definitions, lack of
funding also creates gaps in services and
barriers to access—both at the institutional
and individual levels. Just as a
family with Medicaid may not be able
to afford a car to drive their kids to a
child care center, a middle-class family
may not be able to pay for the high
deductibles and co-pays that typically
come with commercial health insurance.
Examples of institutional funding
shortages abound during the Year of the
Virus and have even affected Polliwog, a
program designed to fill gaps in services.
(Polliwog’s sole funder is Smart Start.)
Budget cuts necessitated a refocusing
of Polliwog, resulting in the elimination
of specialized therapies from the
program. 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.
Finally, 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.
Lack of transportation and the need for
more interpreters were frequently mentioned
as barriers to receiving services,
as well as the need for trauma-informed
care.
Intergenerational poverty 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. 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.
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Suggestions for improving the system
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-
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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.
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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.
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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.
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.
Rachelle’s journey as a super-mom began immediately upon Demayne’s
birth. From the moment he 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.”
As the hours passed, however, Rachelle grew more and more concerned.
“Finally, a pediatrician came in 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. 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.”
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.
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.
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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.
Each Child.
Every Neighborhood.
Smart Start of Mecklenburg County
smartstartofmeck.org
(704) 377-6588
601 E. 5th Street, Suite 500
Charlotte, NC 28202
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.
Taming the Octopus was researched,
written and designed by Jonathan Scott
(jonscottinc.com).
Published January 2021
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.
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