I’ve lived as a person with a severe hearing loss since I was three years old. When I was growing up, I was mainstreamed in the hearing world and did not often acknowledge myself as a person with a disability. I just thought of myself as a person who was different, and I managed my life to get around that difference and pass as much as I could. When I was in college I started working as a library assistant in the UC Berkeley Bancroft Library disability rights movement archive. Because my job was to sort and retain disability rights movement materials for posterity, I had to learn a lot about the history of our movement in a short time. So I’ve thought politically about disability issues for about 13 years and I’ve been active in disability advocacy for about six years.
I first started working for Access Living as a disability movement youth organizer. Now, six years later, I’m the Director of Advocacy. I credit a lot of what I’ve learned about organizing and advocacy to my work with ADAPT, a national disability rights grassroots collective that fights to end the institutional bias in Medicaid. ADAPT is known as the “Panthers” of the disability movement for its community-building, its progressiveness, and its use of non-violent civil disobedience as a pressure tactic.
Our struggle is part of a global paradigm shift around living with a disability that has been decades in the making. The world has long viewed people with disabilities as “less than”—less than perfect, less than whole, less than adult, less than normal. Since the 1960s, leaders in the disability movement have challenged paternalism and pity through affirming our right to determine how we want to live, and where we want to live. Our modus operandi now is the South African saying “nothing about us without us.”
ADAPT’s work involves restructuring Medicaid so that people can choose how their long term care Medicaid dollars are spent. Since the vast majority of people on Medicaid would rather live in their own homes in the community than in institutions, this also involves addressing the need to create meaningful, nonsegregated housing opportunities for people with disabilities.
Medicaid was set up in 1965 as part of Lyndon Johnson’s Great Society effort. At the time people felt that the best way to “take care” of people with disabilities was to make sure that every state received Medicaid dollars to spend on keeping people in institutions. The idea was that if you had a disability, well, you would be safest and most invisible if you were locked away someplace. The US has maintained state institutions since the asylum “reforms” of Dorothea Dix in the 1800s, but Medicaid dollars really helped to feed the growth of institutions. Medicaid also spawned privately owned, state-funded centers for people with disabilities.
You could have anywhere between 20 and 500 people with disabilities, all living in the same place. That’s the institutional system. When I say institution, I mean State Operated Developmental Centers, I mean Institutions for Mental Diseases, I mean nursing facilities—whether you call them convalescent centers or Intermediate Care Facilities or Little Home of the Lamb. Don’t let the names mislead you. There are a variety of living settings that can be termed institutional. And sometimes people might sell these places as, “Oh… it’s just like home.” But it’s not just like home if you’re forced to live without your consent with 50 other people. In my home, you have to have my permission to live with me. That’s the difference between institutional living and community living: you have the right to decide whether to live with or without other people. You have the power to control your everyday life. That’s self-determination in action.
As a federal program, Medicaid is governed by national regulations, but states are also given a lot of leeway to determine how Medicaid money is spent. A state might decide to spend a majority of its Medicaid funds on institutional long-term care settings, or a state might decide to spend those funds on community-based settings. Since 1965 the vast majority of states have spent Medicaid dollars on big institutional settings because institution owners and contractors have found that a very profitable status quo. Now we’re seeing discussions on the federal level about Medicaid and what needs to be done to make sure that Medicaid doesn’t “break the bank.” Conservatives would like to both cut federal funds and give states increased ability to cut funds through block grants.
We can see an example of how state cuts in Medicaid spending affect people with disabilities by looking at Tennessee. For a long time, Tennessee was trying to figure out how they were going to run Medicaid more efficiently, so they converted to a program called TennCare. In switching over to TennCare, they actually changed the rules of who would be eligible for different services. The state looked at who was the most expensive and cut out a lot of those people. They were trying to find the middle ground, and to cut out the extreme ends. So you had people who were cut off from Medicaid coverage because they weren’t disabled enough somehow, and then there were people who were cut off because they were too disabled.
People with severe disabilities lost funding that paid for personal attendant hours. When this happened, many of these people knew there was no way they could get help to do basic life activities: get up out of bed, shower, go to work, make dinner, hang out with family. There was just no way and nowhere in the entire state where they would be able to get the attendant care needed to carry on their day-to-day lives. So the question became: “Where do I go to live the way I need to?” And, for some, the answer was: “to a state that provides more hours of attendant coverage.”
ADAPT is a national organization, so you have a buzzing network of disabled people who know where the best systems are. It turned out that the best place to go to get services was Denver, Colorado. So TennCare created a pipeline of people who were leaving, primarily from the Memphis area, and moving to Denver. It was basically an exile forced on people with disabilities by the Medicaid system—a system that has a lot to do with profit, a lot to do with lobbyists, legislators, and politicians, and, all too often, very little to do with the average person with a disability.
Moving to another state is an extreme measure to have to take, though. Often, and legally, the more common answer to the question “where do I go?” is “into a nursing home.” In many states, nursing home care is mandated if a person needs more in-home attendant care hours than the state will allow. The state will not simply increase the number of in-home hours you receive. If you need too many hours, you will find yourself forced into a nursing home. But people give up a lot when they enter an institutional setting. Once you are moved into a nursing home, you might find yourself losing your home in the community because you may be forced to liquidate your assets to qualify for Medicaid. You might find yourself losing your friends. Family members might not stay in touch with you as much. You might lose your job. You lose all these things when the state forces you into the nursing facility for so-called long term “care.”
Some populations experience movement in terms of a diaspora. What we see among people with disabilities is not a diaspora, but the opposite—a concentration or clustering of people. ADAPT and other disability activists are trying to inspire a reverse migration: a return of people with disabilities into the community.
There are a number of challenges. One has to do with money. We know that living in the community is a cheaper solution in the long term, but there is an outlay of resources that has to happen when a person initially transitions back into the community. The person may have been institutionalized for only a few weeks or several years. When anybody moves into a new place they need things; they need furniture, they need first and last month’s rent maybe a security deposit. In an institution, you don’t cook, so you don’t have that initial pantry supply that other people might have. You need clothes. In the institution you might have a small set of things that you keep, but you don’t have a full wardrobe, or you might not have the kind of clothes that are appropriate for the workplace. So there’s an outlay cost associated with deinstitutionalization.
There are other profound challenges, and they are very close to home. In my neighborhood there are lots of nursing facilities concentrated in this little corridor of Sheridan Road in Uptown. In particular there are many residents with severe mental illness. The community has concerns about having so many of these facilities in the area. But a lot of people also worry that if the institutions shut down, someone with a mental illness might come to live next door to them in their apartment building. Then the community starts organizing against the disabled people out of fear, through bureaucracy and influence. What a lot of people don’t know is that people who are in institutions are usually not in their home communities. They aren’t living where they want to live; it’s just where they’ve been assigned to live by Medicaid and by caseworkers. Many people who move out of institutions move across town or even across the state.
These barriers are not only legal and environmental; they also take the form of attitudes and ways of thinking. But ultimately, we’re looking at a world today that must confront a deep reorientation of the way we live and work as people with disabilities—or with people with disabilities if you are non-disabled. We have not only a movement, but also legal momentum across the country to enforce our civil right to live in our own homes. What’s most interesting in a migration sense is that we are seeing more and more people with disabilities amass folks around them, to form private circles of people with whom the barriers are lifted. The activist Mia Mingus talks about disability, ableism and dating under the term “access intimacy.” One of the final frontiers for folks with disabilities is not just the environmental questions of where to live or where to go to school or those sort of things, but whether you’re able to date, whether you’re able to have a significant life relationship with another person and whether that other person is going to be accessible to you in ways that you need.
How far is “access intimacy” from the state of economic and psychological rape we experience through the institutional bias in Medicaid? Everyone should be able to live a life so accessible that access is simply holistic. We are inventing, right now, new models of access and liberation. We can, now, begin to abandon older models of entrapment and isolation. The path we disabled people travel, psychologically and geographically, is really about a right to return to live in our communities. For some of us, it is not even about return—it is about coming home for the first time.