People with disabilities seek independence

Illinois ranks worst for institutional care

Health care reform could be a big plus for the disabled, says one Springfield disability advocate, but only if the state fundamentally changes how it handles those with special needs.

Tyler McHaley, president of Springfield Area Disability Activists (www.disabilityactivists.org), shared that message Nov. 16 with the Health Care Reform Implementation Council, a collection of state agency directors charged with crafting rules for Illinois’ implementation of the federal Affordable Care Act. The council asked experts and advocates statewide for input on reforming Medicaid and health insurance laws to better meet the needs of Illinois’ poor, disabled and others who use social services.

McHaley says Illinois is the worst state in the nation in terms of sticking people with disabilities in state-operated developmental centers (SODCs), which he says is a costly and ineffective solution. Instead, he says, the state should be funding more community-based service arrangements.

“Illinois annually throws millions of dollars at state-run institutions, spending an average of $166,000 per year on each resident, when the cost of providing services in the community averages closer to $50,000 annually,” McHaley says in written testimony submitted to the council. Illinois ranks 47th in the nation for community services spending for the disabled and 51st in spending for small community-based living arrangements, McHaley says. Focusing on community-based care over institutionalization would be less expensive for the state and more helpful for the disabled, he adds.

Independent living is important to people with disabilities, McHaley notes, saying it requires that they be given choices.

“The choice to live in the community is fundamental to an individual’s ongoing overall health,” he says, urging the council to put “consumer choice ahead of bureaucracy, policy, profit and especially politics.”

“The choice of doctors and specialists who provide care to people with disabilities is equally critical in the overarching theme of health care reform,” he continues. “As long as Illinois retains the mindset that SODCs provide adequate living arrangements for people with disabilities, the state will not move forward. If Medicaid managed care becomes the norm in Illinois with HMOs potentially putting profits before people, the state will not move forward.”

As part of his proposed changes, McHaley also called on the council to support the development of more affordable and accessible housing for people with disabilities.

“You cannot expect people to move out of institutions or even contemplate such a move if they feel they have nowhere to go once they are ‘on the outside,’ ” he says. “An effort to change this culture and provide adequate housing would require an initial outlay of several millions of dollars, but it would also create jobs, provide housing and boost an otherwise sagging Illinois economy. Moreover, studies have shown people who live in the communities as opposed to institutions have better overall health outcomes, including mental health.”

People with disabilities face many other issues, McHaley says, and the council must go beyond the mandates of the federal law to make more meaningful changes.

“…[I]t is essential for this council to understand the fundamental principles behind the ideas that guide people with disabilities and the disability rights movement,” he says. “Consumer choice, independence, freedom to live where you choose and access to health care not mandated by sometimes unknowing insurance companies only begin to scratch the surface of the many issues people with disabilities find concerning Illinois’ current fiscal and health care environments.”

The Health Care Reform Implementation Council will recommend changes to the state’s health insurance laws and social service programs in an official report by the end of the year. For more information or to submit testimony to the council, visit www2.illinois.gov/healthcarereform.