Each year since 2006, The Arc of Illinois Family to Family Health Information Center
has issued an update “Snapshot Stats on Children and Youth with Special Health
Care Needs in Illinois”
(Special Health Care Needs is a term used by the federal
government and refers to children and youth with any type of disability and/or
chronic illness).

We use a combination of both Federal and State agency data sources for this
document. We continue to be concerned about the challenges involved in obtaining
timely Illinois-specific data reports from some important  entities in our state.

We use this data to inform us in our policy and advocacy work here at The Arc of
Illinois, and share it widely with families, colleagues and elected officials.

However, challenges remain as we strive to learn more about the children and youth
that we represent.

Today, we know that 48% of all children in Illinois have private health insurance, 40%
are insured by Medicaid and 3% are uninsured(www.statehealthfacts.org).

We need to know more, for example, about children with special health care needs
who are insured by Medicaid, but do not receive SSI and also do not participate in

Are they receiving all needed referrals for specialty care, services and supports? If
they participate in a Medicaid Managed Care plan, does the plan’s network include,
for example, specialists,therapists,mental health and behavioral health services, care
coordination supports and other services which they may require? Are children and
youth with I/DD being referred to their Independent Service Coordination agencies to
“do” the PUNS?

We also need to know more about the health insurance status of children who are the
PUNS list. This will guide us in supporting their families to learn more about maximizing
their benefits for medically-necessary disability-related services while they are “waiting”,
regardless of type of insurance.
Families of children on the PUNS list whose children are already insured by Medicaid
(a currently unknown number) need to receive information about their rights under
Medicaid’s EPSDT (Early Periodic Screening Diagnosis and Treatment) regulations and
how to access them, for example.

We hope to see enhanced data collection on our state’s many children and youth with
special health needs so we can better advocate for them in terms of program and policy.

Changes which we recommend include:

  1. Adding a question about health insurance status to the information collected for
    PUNS enrollments and redeterminations.
  2. Including a question about health insurance status in the IEPS and 504 plans of
    school children of all ages.

We invite you to contact The Arc of Illinois Family to Family Health Information Center
with your questions, comments and recommendations related to state-level data about
children and youth with special health care needs.

Faye Manaster,M.Ed.
Project Director
Family Voices of Illinois
The Arc  of Illinois Family to Family Health Information Center

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)