Taming the Octopus - Executive Summary

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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