Thank you for affording us this opportunity to share our comments regarding the Illinois Department
of Health Care and Family Services 1115 Waiver Concept Paper.  Family Voices of Illinois represents
families and professionals caring for children up to age 21 with special health care needs, disabilities
and/or chronic illnesses. We are part of a national network of Family to Family Health Information
Centers funded by the Health Services and Resources Administration (HRSA) Maternal and Child
Health Bureau (MCHB).
Our comments are based upon our extensive experience in providing statewide information,
referral and training services to thousands of families and professionals regarding children and
youth with special health care needs, disabilities and chronic illness throughout Illinois.

Home and Community Based Infrastructure, Coordination and Choice

Core premises

Individual choice and the right to remain in one’s own community.

  • Establish across the board “medically needy” eligibility (annual eligibility) – instead of
    spenddown (which is temporary and month-by-month) for children and adults who
    have documented extraordinary expenses due to their complex and/or multiple medical and
    disability-related needs.  Currently Illinois has nine waivers, six of the waivers serve children
    and only two waive family income.
  • Facilitate access to PUNS (Prioritization of Urgency of Need for Services) for adults with DD
    enrolled in the new ACA Medicaid (which means that they are not [yet] on SSI) – streamline
    the disability determination process.
  • All participants will have a choice about participation in care coordination, including
    requesting training to enhance their own care coordination skills.
  • Using a single point of entry is the way to go, but need to insure that “gatekeepers” have
    adequate training and specialization for persons with special health needs and/or disabilities.
    Establish collaborative agreements with the Independent Service Coordination agencies who
    currently serve as a knowledgeable, established resource for people with intellectual/
    developmental disabilities.  Avoid the recent scenario where an MCO assigned a person with
  • severe physical disabilities to a care coordinator who is an addiction counselor.
  • Have the same “ground rules” for all waiver-funded services and supports. For example,
    the caveat that mandates PA care to be provided only within the walls of a person’s home, but
    literally not outdoors or in any community setting. For children, for example, allow 1:1 support
    staff to support children in integrated community settings such as day care and day camp.
  • Support and fully fund an array of home and community based direct care options, including
    (but not limited to) RNs, LPNs, CNAs, personal assistants, direct support professionals and
    personal support workers.


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)