Freedom of Choice

On August 29, Access Living, the organization I work for, as part of a coalition that also includes Equip for Equality, the ACLU of Chicago, Steve Gold and SNR Denton, filed a class-action settlement on behalf of people with disabilities living in nursing homes in Cook County, Illinois. When approved by the Court, the settlement will give people with disabilities in nursing homes the choice to receive Medicaid supports in their own apartments instead of nursing homes. If implemented well, the settlement will give people with disabilities what the Americans with Disabilities and the Olmstead U.S. Supreme Court decision originally intended, the choice to live independently and in an integrated community. Historically, people with disabilities have been segregated from the general population, warehoused in institutions like nursing homes because integrated services did not exist, and because political and monetary interests resisted change.

The problem with this kind of system is that thousands of people with disabilities are in nursing homes for no reason. The supports people need, like personal assistant help, could just as easily, be provided in a person's own apartment. Nursing homes cost more money than services in the community, and often times they increase the isolation and decrease the quality of life for people forced to move in because other support options can not be found.

Within the first two years of the settlement process, more than 1,000 people with disabilities will transition out of nursing homes and into community-based apartments. That number may not sound large within the context of the settlement class -- 20,000 people -- but to give it some perspective, Access Living runs a program that works one on one with people with disabilities in nursing homes, giving them the resources they need to move out. Because the system in Illinois is set up in such a way that the majority of resources are funneled into institutions, just more than 250 people have transitioned out of nursing homes since 1998, when the program started. Basically, in order to move people out, Access Living has to work against the grain of the system. The goal of Colbert v. Quinn, the class action settlement signed on August 29, is to change the system in Illinois. With this settlement, thousands of people in nursing homes will be offered quality community-based support services in their own homes. Now, when people choose to move out of an institution, they will no longer be forced against the grain of the system.

The morning after the filing, Access Living hosted a news conference for media to announce the settlement. The afternoon before, and the morning of the news conference, I sent an email to Access Living staff, briefing them about the settlement and the media event. About an hour or so before the media event, I was in the Access Living break room. While I poured some coffee, a co-worker of mine named Jim walked into the break room. Jim has many years of experience working on community integration issues (changing long term care systems in order to allow more people with disabilities to get services in their own homes instead of institutions) with ADAPT and with Access Living. Jim mentioned the settlement. He said something like, "this is great. I wonder if everyone understands just how huge this is?"

Hearing this from Jim was great. He had spent many years participating in civil disobedience and direct action protests on behalf of people with disabilities whose civil rights had been violated because they were segregated unnecessarily in nursing homes. Though the Colbert agreement is a great step forward, the agreement is a legal settlement. The disability legal coalition had to negotiate in order to reach an agreement with the defendant, the State of Illinois. There was some concern over how some disability advocates, like Jim, would respond to a few of the settlement details that came out of the negotiations.

Jim's question -- how huge is this?- echoed in my ear later that morning. About half an hour after speaking with Jim, I was in the office of Access Living's President, Marca Bristo. Marca has more than three decades within the disability rights movement. Among many other resume builders, she was a part of negotiations that brought forward the Americans with Disabilities Act. Marca was scheduled to speak at the news conference. We were discussing her talking points and the over all agenda for the media event. My cell phone rang. It was a local television station. When I arrived at the office that morning, the first thing I did was email, then call, local television and radio stations, inviting them to the media event. An assignment editor from one of the stations called me back while I was in Marca's office. He had a few questions about the settlement before the media event. He asked about Medicaid in Illinois. He asked about how the long-term care system worked for people with disabilities in Illinois. He asked about how many people the settlement might impact. After a few questions and answers, the assignment editor paused. There was silence over the phone for a few moments. Then the man said, "this is pretty huge, isn't it?"
"Yes," I answered. "It is."

I've worked at Access Living for a long time. I really enjoy the job, and often times the job is very satisfying and fulfilling. But I am hard pressed to remember a moment as gratifying as last Tuesday morning, when the assignment editor for the local television station said, 'this is huge...', grasping what kind of impact the Colbert settlement will have on the Illinois Disability Community.