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People with disabilities stress need for home supports

Thu, Jan 30, 2014

On Tuesday, December 3, Michael Grice starred in a skit about a nursing home resident struggling toward the front door through a line of bureaucrats, social workers, and nursing home staff who were determined to see that he stay in the nursing home or fail in the community. The skit, part of “Moving on Out,” a Town Hall co-hosted by Access Living and the University of Illinois at Chicago, highlighted the barriers people with disabilities face when moving out of nursing homes, and when securing services they need to stay independent in their own homes.

Thousands of Illinois residents live in their own homes with the support of State-funded services such as personal assistants, workers who help with day-to-day tasks like dressing, bathing, and cooking. Without the supports, many people would be forced into nursing homes. Though it saves Illinois money when state services are invested in the community, long-term care in Illinois continues to disproportionately fund more expensive institutional care for low-income people with disabilities.

Skit at the Town Hall Meeting

For a skit at the Town Hall Meeting, “Moving on Out,” Michael Grice (Center, wheelchair) illustrates the road blocks in the way of people moving out of nursing homes.

Following the skit, Grice (who is in the process of leaving a nursing home), and three other advocates shared their experiences fighting for quality services in their own homes. The panel made it clear that maintaining the supports necessary to stay independent is a day-to-day struggle with the Illinois Department of Human Services, which is pressured to cut support hours and cap services in order to save money. Grice was once told that he qualified for only six hours a day of services. “What the hell am I going to do with six hours a day?” Grice exclaimed. “We must fight for more hours in the community.”

Starting in 2005, a coalition that included Equip for Equality, the ACLU of Illinois, Access Living, and the pro-bono support of the law firms Kirkland & Ellis and Dentons, filed three class-action lawsuits against Illinois for its failure to provide housing and service options outside of institutions to people with disabilities. All three cases led to court-approved consent decrees requiring Illinois to implement plans that give people with physical and mental disabilities supports for housing, to move out of an institution, and to live in the community.

Two of the cases have eventually met their benchmarks. But in the first year, the implementation plan for the third case, which covers people with disabilities on Medicaid and living in Cook County Nursing Facilities, has moved only moved 80 people, far short of the 300-person requirement of the Consent Decree.

Speaking at the town hall, Karen Ward, the vice president for public policy at Equip for Equality, suggested that Illinois “tried to fit everything within the existing system.” The State failed to make a cultural shift to community services, and tried to implement the Consent Decree through a system ill-suited to move people from institutions. The Court-appointed monitor for the Cook County Nursing Home case was critical of the State’s lack of progress. In a report issued in late November about the Colbert Implementation Plan, the Court-appointed monitor found that the “State is fundamentally in non-compliance at Year One.”

The State has acknowledged that it needs substantially to change its approach in order to move toward compliance with the Consent Decree. The fact that the Consent Decree is an enforceable court order, and that a federal judge has the authority to step in if the State does not make adequate progress improving its performance, is good news for Grice and many others in Illinois, who remain committed to fighting for their right to live independently in their own homes.

Gary Arnold
StreetWise Contributor

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