Family
Support Network
of Illinois
Family
Support Network
of Illinois
For a PDF version click Here
The Family Support Network has learned that the Family Assistance and Home-Based Support Services Programs have received a 3% increase in funding for FY 97. The increase is part of a cross-the-board increase in Community Based Programs in the DMHDD budget. That translates to an increase of $77,800 for the Family Assistance (children 18 and under) and $154,900 for the Home-Based Support Services Programs (adults over 18). According to the calculations of one individual, ideally, that would accommodate 15 more children and 15 more adults. However, Ed McManus, Coordinator of the programs for DMHDD, says that because of budget overruns already being experienced by the programs, those numbers will probably be significantly less and they may not actually be able to add people to either program.
Currently, 167 children and 252 adults with severe emotional disturbance and 188 children and 379 adults with developmental disabilities are being served. There are 6,521 families and adults on the waiting list. The current budget for that the Family Assistance and Home-Based Support Services Programs is $7.7 million dollars. The Family Support Network and the DMHDD Family Support Advisory Council had requested that this budget be doubled.
Bill Kienzle, of Polo, IL. was one of a number of parents and family members that testified before the House Appropriations Committee on Health and Human Services concerning the DMHDD Budget and, of course, specifically, the Family Assistance and Home-Based Support Services Programs on March 28th. This is what he said:
"More importantly, I am Mandy’s Dad.
This is Mandy (holding her picture up). She is an eight-year old girl diagnosed with severe, multiple, disabilities—primarily Cerebral Palsy and a severe seizure disorder. Mandy does not walk, and uses a wheelchair for mobility.
Mandy has two older sisters, Jennifer, 13, and Sara who is 9 going on 23. Mandy has reached an age and weight where additional assistance for her care is vital to relieve the physical and mental stress of Mandy’s primary caregiver, her mother.
In the past year, Mandy’s mother and I have considered placing Mandy in an out of home placement. If this would be a state operated facility, the cost to the state would be approximately $84,000 per year as compared to that of the Family Assistance and Home-Based Support Services Programs which averages approximately $6,000 per year. Obviously, this program makes great economic sense for the State of Illinois.
Furthermore, in a time when lawmakers are "talking the talk" about Family Values, I would encourage you to walk the walk" by supporting a substantial increase in funding for the Family Assistance and Home-Based Support Services Programs. Please don’t force families to separate brothers and sisters from each other due to the lack of support given to the Family Assistance and Home-Based Support Services Program."
This spring the Family Support Network worked closely with the DMHDD Family Advisory Council to educate legislators and try to effect an 100% increase (a doubling) in the budget for the that the Family Assistance and Home-Based Support Services Programs.
In the middle of March, a contingent of members from both groups were delighted when they met with Speaker of the House Lee Daniels and he agreed to support an increase to both programs.
On March 28, we met with tremendous success at the DMHDD budget hearings as many Representatives asked very positive and thoughtful questions about these two programs. Representative Jan Schakowsky sponsored an amendment doubling the funding for our two programs.
We sailed into the ARC Rally Day feeling very upbeat and positive that this could be the year that we finally saw a significant increase in funding. There are currently 6,521 families and adults on the waiting list and only 986 families and individuals being served.
Our yellow fact sheets were distributed by over 500 people at the ARC Rally and delivered to their Representatives and Senators. Other efforts to deliver our message included an action alert sent by the FSN, phone calling by many of our membership and their networks, and lobbying efforts by other wonderful groups such as People First and Partners in Policymaking. Results are disappointing for FY97-- 3% is not 100%. But every contact we make educates another legislator not only to the importance of these programs, but, to the fact that we are here. We are not invisible. We are important. We love our children and we want them at home. Home is the first best choice.
What is a Center for Independent Living (CIL)? CILs are community based, nonprofit organizations that are directed and managed by persons with disabilities. According to both state and federal law, CILs must have a majority of their board of directors be persons with disabilities. Management and service positions must be filled by a majority of persons with disabilities. CILs are primarily social change and self help organizations. Core services include peer counseling, skills training, information and referral, and individual and systems advocacy. There are currently 21 CILs in the state of Illinois.
CILs are established by persons with disabilities. The focus of a CIL is on creating a welcoming world and removing community barriers, and administrative and policy based barriers.
CILs can be, and should be, an excellent connection for parents and their
children with disabilities. CILs in Illinois are getting more involved in
educational activities, particularly activities promoting inclusive education.
The Illinois Network of CILs (INCIL) Education Subcommittee currently has
nineteen CIL representatives serving on the committee. The majority of CILs are
currently addressing a variety of childhood disability issues.
How can parents become involved with their local CIL? Parents can become involved with CILs in various roles, including board members, staff members and as recipients of services, particularly with their children with disabilities. CILs should provide a welcoming environment for parents to organize and plan their individual and collective advocacy projects.
If you want to learn more about CILs or find out where your CIL is located, contact Debbie Goodman or Missy Kichline at IMPACT, Inc., 618-462-1411 (Voice/TTY).
