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Innovative approaches to family support; Chicago pilot program for home care.


Chicago Pilot Program for

Home Care

In a northern suburb of Chicago, Illinois, one family with a child with a developmental disability has successfully fought for the resources to care for that family member at home. By receiving state and federal reimbursement equal to what it would cost to care for their daughter in agroup home, Ellen and Ed McManus have been able to hire respite caregivers for Laura, who is fourteen, and to keep her at home.

Laura had been placed in a group home at the age of ten. Non-ambulatory and non-verbal, Laura required extensive assistance. Her parents had been advised that if they waited, they would have difficulty placing her when she was older. But the McManuses were not happy with placing Laura away from home. Ellen McManus said: "It just didn't make sense that a child would leave the family at 10 years. There was this emptiness that something wasn't the way it should be."

With the help of Community Alternatives Unlimited, a case management services provider, the McManuses and their friends formed Community Living Inc. (CLI), a nonprofit group dedicated to aiding the families of children with disabilities in Chicago's northern suburbs. CLI asked the state to authorize a pilot project for Laura; the proposal was approved. In March 1989, Laura returned home.

The state agreed to provide the same level of funding that it was providing for Laura in the group hope, which is about half of what it would have cost to move her to a state-run institution, and to assist the McManuses in home adaptations, including installation of outdoor and indoor chairlifts. Two other resources were the Social Security Administration's SSI program and the state's respite care program. The state funds actually go to CLI, which, with no administrative expenses, use all of the available resources to pay for the caregivers. Laura is home because the McManuses have caregivers for 47 hours in a typical week -- from 3 to 8 P.M. during the week and eleven hours a day on Saturdays and Sundays. During the week, Laura attends Wilmette Junior High School for half the day where she has a busy schedule assisted by three other seventh grade girls who have volunteered their services, and an aide. She helps catalogue materials in the library as part of her schedule, and also takes a computer class with the help of assistive technology.

Ellen McManus is hopeful that Laura's community integration will continue to grow as everyone involved recognizes its value both to her and to her community. Although the McManuses acknowledge that a home-care program may not be the best alternative for every family with a child with a disability, they believe that, in Laura's case, "As long as she's a child, this is where she belongs, under our roof."
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Title Annotation:Family Support Bulletin
Publication:The Exceptional Parent
Date:Jan 1, 1991
Previous Article:Editorial - "suit the actions to the words." (Family Support Bulletin)
Next Article:Detroit: Project SPIN - self advocacy group.

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