In February 2005, Lenil Colbert had a stroke after undergoing surgery to remove a blood clot. Previously, he worked a variety of jobs, including drill press operator and delivery driver.
After Lenil had a series of seizures, he ended up in a nursing home in suburban Chicago, Illinois a year later. He shared a room with three other adults. Even though he was 35 years old, he, like every other resident, was confined to his room after 10 p.m. All residents had to share a single payphone.
Lenil wanted out. So in August 2007, he became the lead plaintiff in a federal lawsuit filed by attorneys from Access Living, Chicago’s Center for Independent Living, Equip for Equality, the Protection and Advocacy agency in Illinois, and the American Civil Liberties Union.
The lawsuit accused the state government of Illinois of being out of compliance with the Olmstead decision by not providing disabled people like Lenil and the other plaintiffs with the opportunity to live outside of the nursing home with community support services.
A settlement was reached with the state of Illinois in 2011 which is now known in Chicagoland as the Colbert Consent Decree. It requires the state government to assist disabled people living in nursing facilities in Cook County who are Medicaid eligible to transition into community settings, if that’s what they desire.
A ”Center for Independent Living" is a consumer‑controlled, community‑based, cross‑disability, nonresidential private nonprofit agency, designed and operated within a local community by individuals with disabilities and provides an array of independent living services. Relocating from nursing homes is just one of the services they provide.
Find the CILs in your state or US Territory.
Learn how Access Living, Chicago’s Center for Independent Living, supports Chicago residents with disabilities to live in the community.
Moving is often a long and laborious process. For those who want to use the resources provided by the Colbert settlement, the process begins when they notify the Illinois Department of Aging (IDoA) that they want to move out. If that person qualifies for assistance under the terms of the Colbert Consent Decree, IDoA then refers them to a private, for-profit managed care organization (MCO). The MCO evaluates their needs and helps them get to the point where they are ready to move out. This might entail securing such basics as a state identification card or arranging for homemaker services. This can take many months.
Access Living steps in when it’s time to locate accessible, affordable housing. This is no easy task. It’s close to impossible to pay the rent price of even a small apartment in Chicagoland with only Social Security as income. So the Colbert Consent Decree requires that every person, transitioning under the terms of the settlement, receives a rent bridge subsidy from the Housing Authority of Cook County. Anyone holding one of these vouchers pays up to 30 percent of their income for rent and the U.S. Department of Housing and Urban Development pays the remainder.
But there also are costs associated with moving into a new home, such as application fees, security deposits, cost of furniture, housing necessities and food for the first month. Most Medicaid-eligible nursing home residents have no savings or other assets. The nursing home takes all of their Social Security Income except for $30 a month. So Access Living receives a budget of $4,000 from IDoA to pay these expenses for each person moving out under Colbert.
Access Living staff help the nursing home resident find suitable housing. Once the housing application is accepted by the landlord, the nursing facility resident then selects home furnishings from the catalogue of a furniture company that works with Access Living to supply people moving out under Colbert. Other necessities are also selected and purchased, such as utensils, cookware and small appliances.
Access Living, the MCO, and the resident determine a date for the resident to move. The day before moving day, Access Living staff shop for the person and supervise furniture and medical equipment delivery. On the day of the big move, Access Living staff transport the person and help them settle into their fully-furnished home.
Lenil moved out of the nursing home in April 2008. He lived in his own apartment, with the help of assistants whose wages were paid by the State of Illinois Home Services Program, until he died in 2013. But his legacy lives on. As of January 1, 2019, 2,361 people moved out of Cook County nursing facilities using the resources of the Colbert Consent Decree.
Mary’s life spiraled downward in 2012. She was in the midst of a divorce and her house was up for sale.
And then one morning, everything got worse.
“I showed the house that morning,” Mary says. “I showered and then all of a sudden my stomach blew up like a basketball.”
Mary underwent surgery for a perforated colon. By the time she was ready for hospital discharge, her house had been sold and she had no home.
So Mary was discharged to a suburban nursing home that she says was “nice” compared to many other nursing homes. It was nice in the sense that it was clean and the atmosphere was relatively calm.
But Mary still hated being there. “It was like a prison. Everybody told you what to do, when to do it. There was no freedom.”
There was a death nearly every day, Mary says. And until she checked into a nursing home, she had no idea that the nursing home would take all of her monthly Social Security income except for $30 a month.
She resided in the nursing home for two and a half years and she feared she would never get out. But one day someone came in and gave residents a presentation about the Colbert Consent Decree. “I jumped on it immediately.”
The process of getting out took about two years. With assistance of Access Living staff, she looked at four or five apartments before she found one she “fell in love with.”
Once a date was set for Mary to move out of the nursing home, she was delighted and buoyant with anticipation. “I tried to keep it a secret but you can’t keep anything a secret in a nursing home.”
Mary marks that date: February 13, 2018. With the help of Access Living staff and the resources of the Colbert Consent Decree, she moved into a fully-furnished one-bedroom apartment in suburban Chicago. The apartment is “accessible enough” for her to maneuver around in her manual wheelchair. She receives four hours of homemaker assistance each day from an agency.
“I have nobody telling me what to do,” Mary says. “You can do what you want. You can read if you want. You can watch TV if you want. You can listen to music. It gets lonely but this is what I wanted. I can’t tell you how happy I am.”