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A Little
History Family Support is an exciting and innovative new way of thinking about how services to people with developmental disabilities and mental illness can be delivered. Most importantly, it provides family members and adults with disabilities and mental illness the power to make decisions about what is best for them and their family members by tying dollars to the individual, not an agency or service provider. Until only recently, tax dollars have always been spent on paying for institutions and other agency-driven care outside the family home. Prior to the mid 1970's families had to do the best they could caring for their sons and daughters at home until they couldn't manage any longer. Often families broke apart under the stress. Most often out-of-home placement for the family member with a disability was the only alternative. In the mid-70's the concept of respite (periodic relief) swept the country and states began to offer some measure of respite to families. It was about 1980 or 1981 when the state of Pennsylvania added Family Support to the services provided to families of children with mental retardation. Their statute stated that Family Support could include, but not be limited to, a list of services or "other services identified as needed by the family." In 1987, United Cerebral Palsy of America (UCPA) and Human Services Research Institute (HSRI) were funded by the National Institute for Disability and Rehabilitation Research to discover methods of covering costs for families who maintained their sons or daughters with chronic illness or severe disabilities at home. Then, in 1989, the Administration on Developmental Disabilities awarded UCPA and HISRA a grant to educate policy-makers about family support in the states of Maine, New York, West Virginia, Florida, Missouri, Indiana, Louisiana, Oregon, Wyoming, and Hawaii. Each DD Council in those states established a Steering Committee of mostly families. These families gained information about the status of family support in their own state and what was happening in other states. They learned the legislative process and how they could be influential in shaping public policy. They also gained skills on articulating the various facets of a comprehensive system of family support to legislators. In 1989 and 1990, the Illinois Planning Council on Developmental Disabilities funded eight trial Family Support Programs. The purpose of these programs was to provide legislators with information to prove that family support could work. In 1989, even before the projects were completed, Representative Lee Daniels (now Speaker of the House) introduced a bill for "The that the Family Assistance and Home-Based Support Services Programs" (House Bill 69). When applications were opened in 1990, about 6,000 people applied and 570 were selected randomly. In l990 the Illinois Planning Council on Developmental Disabilities wrote an RFP for a grant to create a "Family Support Network" whose purpose would be to provide information to families on family support and to devise means for families to educate policy-makers about their support needs and preferences. The grant was awarded to People for Inclusive Communities (PIC) in October of 1990. The first meeting of the Steering Committee of the Family Support Network took place in the spring of 1992. The Steering Committee was established to direct efforts of the Network to educate policy-makers, and it was made up of participants from across the state. Great care was taken to include individuals who represented multiple interests, age ranges, disability types, geographical areas, and existing advocacy groups. The first meetings were dedicated to defining the underlying values guiding the group's work, its mission, and its objectives and to developing an infrastructure for supporting the group’s work. Working committees were formed. Three one-day conferences were held. Presentations were made all over the state. A phone tree was developed. A newsletter and brochures were created. In the spring of 1993, the FSN met its first legislative challenge with great success when the Family Assistance and Home-Based Support Services Programs received a $1.9 million dollar increase and 500 more individuals and families were added to the programs. In
1997, after years of slow or no growth, a $1 million increase allowed
DMHDD (now DHS) to enroll 230 new participants.
Momentum
began to build. Spring of
1998 brought an unexpected enrollment 141 families with children as a
result of surplus budget funds in the program. Then again in 1998, a
$1.46 million increase in the budget allowed the enrollment of 50 new
families of children into the program.
Also in 1998, the legislative budget process brought an
additional $1,000,000 committed to “family support services” in a
memo between DHS Secretary Howard Peters and Steve Schnorf, Director of
the Bureau of the Budget. Because
these were lapsed federal dollars and because of the vague wording, the
FSN had to fight to make sure this funding was used for the Family
Support Programs. In the
fall of 1998, we were successful when 90 adults were enrolled in the
Home-Based Support Services Program.
This was the first new enrollment in the adult program in five
(5!) years. Christmas
of 1998 brought more great
news with a phone call from DHS announcing the enrollment of 400 more
adults and children into the Family Assistance and Home-Based Support
Services Programs. In
May of 1999, Charlotte Cronin, Executive Director of the FSN, was part
of a group of advocates who met with Governor Ryan to celebrate a $29
million increase in services for people with developmental disabilities.
Three million of that funding went for increases to the Family
Assistance and Home-Based Support Services Programs! Two million was
allocated for the new Supported Living Services programs, which in many
ways was modeled after the Home-Based Support Services Programs. Again
in December, we got a great present from DHS - a phone call announcing
the mailing of application packets to 400 more adults and children in
the program. Spring
2000, the FSN was thrilled to hear Gov. Ryan announce in his February
budget address that he has included $4 million new dollars for the
Family Assistance and Home-Based Support Services Programs. Fall
2001 brought dramatic economic challenges to the State of Illinois. In
February 2002, the Governor’s proposed budget effectively eliminated
the Home-Based Support Services Program. Recipients with developmental
disabilities were to be moved into the Supported Living Services (SLS)
Program. Children and adults with mental illness were to be simply
dropped from both the Family Assistance and Home-Based Support Services
Programs. The SLS program provided funding for services and allowed the
state to capture matching federal dollars but was significantly inferior
to the Home-Based Program. The
FSN and all of its members moved to action!
We called, visited, and wrote to our legislators. The FSN Task
Force worked with DHS staff and re-shaped a new Home-Based Support
Services Program that allows the state to capture Federal Financial
Participation dollars for adults with developmental disabilities.
Recipients with developmental
disabilities
retained needed services. Adults and children with mental illness
continued to receive services as before. The
FSN, participants in the program, and families continue to meet monthly
with DHS, working to ensure that the Family Assistance and Home-Based
Support Services Programs provide the high quality, flexible services
that people with disabilities and their families deserve and need. It
is important to remember that the Family Support Network is a network -
a knitting together of individuals and organizations all over the state
that believe that families belong together and home is always the
first best choice. Thanks
to Fran Smith, Colleen Wilcox, and Ellen McManus for their contributions
to this article. For more
information on current funding legislation for the FAP and HBSSP and to
find out how you can help, contact the Family Support Network at
309-693-8981 or FSN@FamilySupportNetwork.org
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A Little History
There's No Place Like Home - Fact Sheet
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