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Us! Has this happened to you? You looked for services for you or your child with a disability and you found one. However, it had a waiting list… or it was too far away... or didn’t have the services you needed available in a way you could use them. Maybe you enrolled in a program that was stretched so thin it did not help. Or maybe you just couldn’t find services at all. People with disabilities and their loved ones face issues like this almost daily. They are often at the mercy of the service provider’s ability or willingness to provide services that address their unique needs. Two programs exist in the state of Illinois to give individuals with disabilities and their families real control in designing the supports and services their family members and, indeed, their whole families need. These are the Family Assistance and Home-Based Support Services Programs run by the Illinois Department of Human Services. Created by law in 1989, these programs are designed to complement each other. The Family Assistance Program offers a monthly stipend to families who have a child (17 years old and under) with a severe developmental disability or severe emotional disturbance. Family income cannot surpass $50,000 a year after deductions on their IRS 1040 tax form. The stipend changes yearly and it is equal to whatever SSI is that year. The current figure is $530. Funding can be used for whatever the family feels is needed to support their family member with a disability at home. The program is designed not only to support the individual with disability, but to keep the family who loves and cares for that person whole and healthy. Funding is most often used for items and services such as respite, personal assistance, ramps, wheelchairs, lifts, diapers, meds, insurance premiums, housekeeping, camp fees, air conditioning, "whatever it takes". Children automatically "roll into" the Home-Based Support Services program when they age out of the Family Assistance Program, assuming they continue to meet the qualifications. The Home-Based Support Services Program is designed to support adults with severe developmental or mental disabilities (18 years old and over) so they can live in the community or with family. Enrollees must also be eligible for SSI and the family’s income is no longer counted. The program is a voucher system in which an individual with disabilities works with a service facilitator to design the supports and services that person will need to live successfully in the community. Expenses for items and services are reimbursed directly to the provider(s) of the supports and services at the end of the month. Expenses can total up to $1590 (or 3 times SSI) a month. The program is designed to be consumer driven. It allows the individual to access services and products not only from traditional providers of services to people with disabilities but also from more "generic" sources, allowing the individual easier access to a more integrated lifestyle. Combined, these programs are best practices models of consumer driven services that provide equal access to individuals disabilities and their families, regardless of where they live or what their disability might be. If an individual or family is unhappy with how their services are being delivered or how they are treated they can simply purchase those items or services from another source. Currently about 2600 individuals and/or families are receiving support through these programs. This April (2000), the Illinois State Legislature passed the Fiscal 2001 budget with Governor Ryan’s proposed $4 million dollar increase intact! This new funding will allow DHS to enroll 143 adults in the Home-Based Support Services Program and 370 families with children in the Family Assistance Program. With this new enrollment, participation in the two programs will have increased from about 1200 participants at the beginning of Fiscal 1999 to over 3100 at the end of Fiscal 2001! It is important to note that DHS has been very aggressive these past two years in finding new funding for these programs. We never know when there might be new enrollment! The end of the legislative session is not the only time new enrollment can become possible. To place your name or the name of your loved one in the potential applicant pool, you will need to fill out a registration form available from the Illinois Department of Human Services. These forms are a simple postcard and are available by calling 1-800-843-6154 or 217-782-8834. Gloria Heggy will be happy to send you as many forms as you would like. You can share with your friends and fellow advocates. The forms are also available here on the Family Support Network website. The form must be printed out, filled in and mailed to the Department of Human Services at the address provided. It is hard to estimate just now how many adults and families will still be waiting for services July 1st. On one hand, we have new selections being made and on the other, the excitement of the disability community is evident as large numbers of new applications are being received daily. What we all know is that as long as one person waits, as long as one family needs services, we have to serious work to do. The Family Support Network wants to expand these programs. We still need to share our stories and let our legislators and others that can influence change know what we need. Your help is essential. Please join us. If you are now receiving services, tell them how it has impacted your life and that others are still waiting! If you are waiting, well, its obvious. Tell them how important these services are and how you would use them. Thank them for their support in past. If you are frustrated over the lack of programs and funding to support your family member and you have not taken action to educate your legislators you have no one to blame but yourself. We can grumble and groan. We can shake our fists at the sky and bemoan the priorities of the State of Illinois. But, if we won’t take the time to tell our stories, who do we have to blame? Only ourselves. Please contact the Family Support Network. We will give you the information you need to feel confident. We can tell you who your legislator is. We can give you facts. We can give you figures. Please help. We need you. |
A Little History
There's No Place Like Home - Fact Sheet
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Contact 309-693-8981 voice or Michele Westmaas 217-285-2301 voice Please help us spread the word about the Family Assistance
and Home-Based Support Services Programs. The Family Support Network was awarded a grant from the Illinois Planning Council on Developmental Disabilities, a state agency that advocates, plans and invests in better services for people with disabilities so that they can fully participate in all aspects of community living including employment, housing, education and recreation.
Have Heart. Have Brains. Have Courage. |
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