The Arc also operates the Family-to-Family Health Information Center directed by Faye Manaster. One of our exceptional partners as we advocate for children with special health care needs is the Illinois Chapter of the American Academy of Pediatrics.

Below please read our combined comments on the Transition Plan for the new CMS Rules.


The Illinois Chapter of the American Academy of Pediatrics (ICAAP) and The Arc of Illinois Family-to-Family Health Information Center (F2F) support the comments on the Healthcare and Family Services Transition Plan for New CMS Rules on Home & Community Based Services (HCBS) submitted by the Arc of Illinois December 6, 2016. Below are additional comments related to the pediatric population for the revised Illinois Statewide Transition Plan.

ICAAP and F2F encourage the Illinois Department of Human Services (DHS), including the Division of Developmental Disabilities (DDD) and the Division of Rehabilitation Services (DRS), and the Illinois Department of Healthcare and Family Services (HFS) to come together and establish a pediatric focus for children (ages birth to 21 years) across all six of Illinois’ current nine Medicaid waivers which serve children with emphasis on coordinating services to support families to keep children living at home, in their own communities, whenever possible. This process should start with formalizing a “no wrong door” policy for all children and families currently receiving any type of services/supports from DHS (any division) and/or HFS (including children and families enrolled in Family Health Plans).

We recommend that HFS establish a pediatric specialist role within the HFS Bureau of Interagency Coordination as well as establish a Children’s Waiver Central Office in Springfield (analogous to the current arrangement established by HFS and DHS specific to the Medically Fragile and Technology Dependent (MFTD) waiver: Central Office (CO) 238, which is part of the Bureau of Local Office Transactions and Support Services (LOTS).

In this way, families of children and youth with special health care needs (CYSHCN) currently receiving any type of services/supports from DHS and HFS can be supported by direct linkage to potential HCBS waiver-specific programming designed to enable them to raise their children in their own communities.

Based on presently available information, our current system in Illinois appears to have some capacity to serve more children with disabilities and/or chronic illnesses with home-based services and supports, but accessing them can be a daunting task for many families, as well as for providers and service professionals. There is a paucity of current, definitive data that continues to be a barrier to both child-specific program and policy.


tony signature
Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
708-828-0188 (CELL)