Several years ago, Henry Williams was sitting in a manual wheelchair under a tree outside of a nursing home where he lived. While sitting under a tree, he took a phone call from someone who told him about a program that helps people with disabilities move out of nursing homes. Mr. Williams followed up on the phone call and eventually found his own place in the community. “I would still be in the nursing home if it wasn’t for that [call],” Mr. Williams recalls. Mr. Williams would not be able to live in his own apartment without the support of personal assistants. Living with diabetes and using a scooter, Mr. Williams receives four hours of personal assistance services three days a week. The personal assistants help with cleaning, bathing, personal care, and some of the cooking. If he didn’t have personal assistant services, Mr. Williams says “I don’t know what would happen . . . The world would be a hell of a difficult place.”
Henry Williams, at a rally at the State of Illinois Building, speaking about the importance of independent living.
Mr. Williams is able to live independently in his own apartment with the support of personal assistats. A recipient of Medicaid, he receives that support through Illinois’ Home Services Program. But, like thousands of others, Mr. Williams’ independence is threatened by $2.7 Billion in proposed cuts to Illinois’ Medicaid budget. Proposed cuts to Medicaid include cutting eligibility to the home services program and cutting the number of service hours individuals receive. Thinking about what would happen if his hours or services were cut, Mr. Williams says, “most likely I’d have to go back [to the nursing home].”
But Mr. Williams isn’t one to wait around for bad things to happen. “You better get off your butt and do something,” he said when talking about what needs to be done to stop the cuts. Over the past few months, he has been advocating to protect Medicaid Services and against the cuts. On May 10, he rallied with about 60 other people with disabilities and seniors in front of the Thompson Center in Chicago, calling to Governor Quinn to protect services that enable people with disabilities to live in their own apartments. On May 16, he is traveling to Springfield, where he will speak directly with legislators about the critical importance of people with disabilities living on their own, outside of institutions. When asked what he plans to tell the legislators, Williams said, “the truth.” He explained, “the cuts are going to hurt. It is going to be chaos.” When asked what the legislators should do, he said, “increase the budget so people have supports they need to be on their own.” While some shy away from talk of spending increases, an investment in community based supports saves money in the long term because community based supports cost less than nursing homes and other institutions.
Mr. Williams is not only advocating for himself. He remembers the other residents from the nursing home. He remembers one in particular, a man named Larry who would sit for two or three days in soiled diapers, without receiving any attention from the staff. “I told Larry I’d do whatever I could to get him out.”
Larry Williams and thousands of others urge you to support the independence of people with disabilities. Support Senate Bill 3913 and House Bill 6141: REAL funding for REAL change!
For more information about Access Living efforts to preserve the independence of people with disabilities, contact Amber Smock at Asmock@accessliving.org or 312-640-2191 voice