By Daschell M. Phillips
This piece is the fourth (and last) in the Neighborhood Writing Alliance’s multi-part series focusing on issues affecting individuals and communities with disabilities living on the West and South Sides of Chicago. These stories are part of the Local Reporting Initiative, supported in part by The Chicago Community Trust.
Nathaniel Allen’s transition from a nursing home to his own apartment went smoothly. With the encouragement of a friend who previously made the transition, he registered for services with the disability advocacy group Access Living, and once the state said he was qualified to live on his own, his search was not a long one. He chose the first apartment that was shown to him.
There is great pride in Allen’s voice when he talks about his two-bedroom apartment in the Englewood neighborhood with its spacious kitchen, walk-in closet, laundry room, and security. Allen was one of the recipients of the 110 housing vouchers given to Access Living from the Chicago Housing Authority (CHA) that allows him to pay $154 a month for the $800 a month apartment. With Access Living’s support in providing the first round of groceries, household items, and furniture, and securing his medical assistance staff, some might call Allen’s transition seamless, but the fight to give Allen and others that have disabilities who desire to have the freedom to live outside of a nursing home was not as easy.
In 1999 the U.S. Supreme Court held that unwarranted institutionalization is discrimination under the Americans with Disabilities Act (Olmstead v. L.C. 52 U.S. 581). The court ruled that those who live in, are “at risk” of living in, or are eligible for placement in institutions have the right to live in the community if they and their treatment teams agree that they can live successfully in the community; they want to do so; and there are resources to help them live in the community.
States such as Illinois that weren’t in compliance with the ruling began to set up committees and task forces to study the situation and propose solutions. Many states began to create plans but the procedure set up for Illinois was never enforced and the state continued to place its disabled citizens in nursing facilities.
When letters from advocacy groups for the disabled to then Gov. Rod Blagojevich went unacknowledged, the groups, which included Access Living, Equip for Equality, the ACLU of Illinois, SNR Denton, and the Law Offices of Steve Gold, filed three Olmstead class action lawsuits on behalf of specific individuals.
The Lenil Colbert v. Quinn case was filed on behalf of people with disabilities who live in Cook County nursing homes and who receive Medicaid. The Stanley Ligas v. Hamos case (formally Ligas v. Maram) was filed on behalf of people with disabilities who wanted to live in the community and have services provided to them in their homes, instead of being placed in large, private, state-funded institutions. The Ethel Williams v. Quinn case was filed on behalf of people with mental illnesses who desired to live in the community and have services provided to them in their homes instead of being placed in intermediate care nursing facilities.
The Colbert, Ligas, and Williams settlements will offer thousands of people with disabilities in institutions and nursing homes in Illinois the choice to live and participate in their own communities instead of being forced to live in state institutions.
The federal court approved landmark agreements with Williams in September 2010, with Ligas in June 2011, and on December 20 it was announced that the federal court approved a landmark agreement on the Colbert case. With all three cases settled, deinstitutionalization advocates are confident that they will receive more federal resources that will get them closer to their goal of ending the involuntary segregation and isolation of people with all types of disabilities in nursing homes and institutions across the state.
Emmanuel Camargo, manager of the long-term care department at Access Living, said the organization has placed 27 people in their own residences so far and plans to have 60 more moved in the next few months through its deinstitutionalization program.
“We are thankful that the vouchers are coming in, but finding affordable housing in the city is one of the main barriers in the process,” Camargo said.
When state funding for Section 8 housing choice vouchers or non-elderly disabled vouchers—as part of the Money Follows the Person program—is given to CHA, the vouchers are given to Access Living for distribution, according to Jessica Porter, senior vice president of the Housing Choice Voucher Program at CHA.
Porter said so far 850 vouchers have been distributed and “if vouchers become available through attrition we will turn them back over to Access Living.”
Amanda Motyka, Manager of Housing Rights and Nondiscrimination at CHA, said they are noticing a small surge in demand for affordable housing.
While there are several organizations across the city that provide affordable housing, Motyka said CHA is the only program that actually sets aside vouchers for the deinstitutionalization program. She added that more affordable housing is being built through CHA’s plans for transformation, in which the institution is redeveloping and rehabilitating its entire stock of public housing.
Porter said CHA supports the Olmstead Decision. “We want congress to provide more vouchers,” she said. “It helps people to restore their dignity.”
Before moving into his apartment in early November, Allen, a retired security guard who has osteoarthritis, lived at the Community Care Center at 43rd Street and Wabash Avenue for 19 months. Before that, he was at the Chicago Christian Industrial League on Roosevelt Road for 4 months.
Now that he has a stable home of his own, he is beginning to make other life-enhancing decisions.
“My apartment is right across the street from Kennedy King Community College, so I am going to start taking classes there to get my GED,” Allen said.
Daschell M. Phillips is a writer who lives in Chicago. She has written about business, politics, and education for publications including Pensions & Investments, The Oakland Tribune, Milwaukee Journal Sentinel, N’DIGO and the Hyde Park Herald.