Chapter 1: Why Should People Control Their Own Homes?
An Introduction to Consumer Controlled Housing
In the past quarter century, people with developmental disabilities have made great strides toward attaining a fuller measure of citizenship in their communities. After being housed primarily in large, isolated institutions, most persons with developmental disabilities who live outside their family homes today enjoy some form of community living. In the early years, residences were primarily group homes that were owned or rented by the agencies providing services to the people living in them. Indeed, even today this remains the most common model of community residential services. But all across the United States, the pattern is slowly but steadily changing.
An Increased Range of Housing Options
In Minnesota, two programs in particular have been instrumental in assisting individuals to live in community settings. The approval of the Medicaid Home and Community Based Services (HCBS) waiver program in 1984 allowed the purchase of individual community services with federal and state Medicaid funds, which were previously limited to a package of housing, care, and training in congregate care settings. The Semi-Independent Living Services (SILS) program uses state and county funds to enable persons with developmental disabilities to receive services while living on their own. Both programs broke the link which forced many persons to trade homes and communities for services.
The evolution of service delivery and funding policies has greatly increased the range of housing options for people with developmental disabilities. In many places, separating service &Mac222;nancing from housing selection has helped thousands of persons with disabilities realize desired lifestyles. In Minnesota and across the nation, persons with developmental disabilities, their parents, service coordinators, housing authority personnel, and others have been acquiring experience, sharing expertise, and developing programs to assist persons with developmental disabilities to live where they want, as they want, in homes that are truly their own, and to still receive the basic services they need.
The range of housing ownership and rental options available to and used by persons with developmental disabilities is as great as that available to everyone else. People with disabilities may live in and purchase or lease single-family houses, duplexes, condos, and units in housing cooperatives. They may live alone or with others who may or may not have disabilities. The common thread here is that people have homes they want with services and supports they need and are able to live on their own terms - rather than feeling like guests in places that are owned or rented and controlled by the agencies that provide services.
Some of the numerous advantages of consumer controlled housing include:
- Permanency: The risk is reduced that other people will decide one must move from one's own home. People who live in their own homes are free to choose new service providers or even to reject service providers without also losing their homes.
- Community Inclusion: People who control their own housing have greater choice in living near people and places that support their participation in the community.
- Freedom: People who live in homes they control make their own rules. The basic right to privacy desired by all human beings is more easily met in one's own home. The place where one can "be oneself" is more easily achieved in one's own home.
- Respect: A home of one's own is a typical and important achievement of American adults. It gives the owner or leaseholder a valued social role. Obtaining a home of one's own is a natural extension of normalization.
- Responsibility: A home of one's own makes an individual responsible for a number of economic and domestic activities. Responding to these responsibilities helps people grow in social competence, both in actual terms and as they are perceived by others in their community.
- Economic Gain: People who own homes have found that careful purchase and long-term residence can increase an owner's financial resources. Those who rent can often choose housing and housing arrangements at costs that free funds for other economic decisions. Both owners and renters contribute to the local economy.
- Location: People who choose their own homes can live where it's most convenient to their jobs, families, friends, stores, or transportation. Living close to places they enjoy allows more frequent participation with less dependence on others.
- Choice: Most people don't want to live with others whom they have had no voice in selecting. Yet this is typical for persons with developmental disabilities. Controlling one's home includes controlling not only where but also with whom one lives.
- Self-determination: People should have a right to control as much of their lives as possible. Few areas are more basic and unambiguous in self-determination than selecting the housing one wants within one's resource limits.
- Independence: People who live in their own home can exercise independence in seeking a service provider. In contrast, people who reside in buildings owned by a service-provider agency must weigh the potential loss of choice regarding home, neighborhood, and proximity to friends against the need to seek services from another individual or agency.
The consumer controlled housing movement in general, and this guidebook in particular, are rooted in a philosophy shared by a growing number of persons with developmental disabilities, their families, advocates, and professionals. This philosophy is called "supported community living."
Basically, supported community living accepts and embraces each person as an individual with his or her own likes and dislikes, aspirations, abilities, needs, relationships, and ways of contributing to the community. Supported living is described as an entirely new way of conceptualizing the purpose of services for persons with developmental disabilities. Minimally, it's a notable stage in the evolution of their citizenship.
The movement from institutional care to housing in community residential settings is critical in recognizing each person's uniqueness. But it also shows that planning and structuring the lives of four, five, or six people at a time places some of the same limitations on their lives as does institutional care. The supported community living concept is built around identifying, valuing, and supporting the uniqueness of each individual. The recognition and expression of individual uniqueness through housing is just one crucial aspect of the concept. It has at least six major components:
- Living in a home of one's own: People should be able to live in homes they choose, with or without people they choose, and in a place where they can exert appropriate measures of personal control.
- Receiving appropriate amounts and types of assistance: People should receive services from providers who can recognize and respond to their abilities as well as impairments, and who have adequate financial and personal resources to meet those needs, and be provided with choice and flexibility in services and providers.
- Controlling the basic personal decisions that affect one's life: People should be allowed to make decisions about their lives, or should be assisted in learning to make such decisions.
- Receiving support in setting and realizing personal goals and aspirations: Planning processes should identify people's long-range goals and provide the assistance needed to develop means and steps toward achieving them.
- Enjoying relationships with others of one's own choosing: People should be supported in maintaining valued relationships with friends and family, and in developing desired new relationships in the neighborhood, community, and work.
- Participating as a full and valued citizen in one's community: People should have support to involve themselves in activities and to fulfill valued roles in the community (worker, consumer of housing or goods, user of public transportation, etc.).
Michael Kennedy's story on the next page captures the spirit of supported community living and the role of one's home in it.
Out of My Old Life and Into My New One
By Michael J. Kennedy
I grew up in three New York institutions. In 1982, when I was twenty-one, I moved into a group living situation in the community called a supportive apartment. I lived with three other men with cerebral palsy, and we were supervised by staff whenever we were home. The supported apartment was much better than the institution, but in the six years I lived there I learned everything I could and was ready to be on my own. Also, the program was funded by Medicaid and had too many rules and regulations, like having to have goals and a service plan.
I knew what I wanted, but I needed help to get it. So I started talking to the director of the program about being on my own. I was listened to in one way, but not in another because nothing was happening. What I had to do to get my point across was to threaten to move back into the institution near my family in the Adirondack Mountains area. The director got wind that I was actually going to do it, and the agency staff didn't want that. I know it would have been a mistake, and I didn't want to quit my job at the Center on Human Policy, but I felt my back was against the wall. That was the beginning of my getting my own home.
The agency told me about a new program they had just received funding for. It was called a Family Care program, but what it does is match a person with roommates and the other supports he or she needs. One of the staff at the supported apartment, John, called me into the office one day and asked me if I would consider setting up a home with him and his roommate Gordy. I agreed, with the understanding that I didn't have to follow Medicaid rules or have a service plan. I wanted to make my own decisions. I made it very clear that when it was time to leave the program, I could just go, no strings attached or questions asked.
As time went on, the coordinator of the Family Care program met with John and me. I told her what I wanted in terms of supports and a home. Part of her job is to help us find a place. The exciting part is that we have a friend who used to work for the agency who is into buying real estate. One day I was kidding with her and said, "Why don't you buy a house that would be easily accessible and I would rent it from you?" About a week later she told me she had bought a house! At first I thought she was kidding, but then when she took me and John over to see it I knew she was serious. We called the coordinator on the phone.
John and I then started meeting with her on a regular basis. It was actually pretty easy to set up the supports I would need, like physical therapy and my orthopedic doctor, because I could just take what I had from the apartment and transfer them to my new house. The supports I didn't have at the apartment were just added on. For example, I had to arrange attendant care with one of the agencies in town. Medicaid would pay for all of this when I was on my own because I kept my Medicaid eligibility.
Always keep in mind that it may not be as easy for someone else as it was for me to set it up. The important thing you have to remember is that you should be involved in every aspect from start to finish. You, the individual, must have the supports built around you, and not be made to fit into a program that wasn't designed just for you. This is true regardless of how severe your disabilities are. It's very important that you have a say about how your wants and needs are dealt with.
If you work at an agency, I would hope that you would go along with the individual on how he or she wants to live. You don't have to agree, but they have the right to live like anyone else.
I've lived on my own for the last two years. Through this period John and I have talked about moving down south. We both like the South for a number of reasons. One is that we both have family down there, and they have been asking us to move down there for quite a while. The most important reason is that both John and I felt we needed a change in our lives, we needed something new, and we needed to move on. So, we are moving to a town near Atlanta, Georgia. I am very excited about this move.
Reprinted with permission from Impact, 3(4), 1990, published by the Institute on Community Integration, University of Minnesota.
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A Guidebook on Consumer Controlled Housing for Minnesotans with Developmental Disabilities, a joint publication of Arc Minnesota and the Research and Training Center on Community Living, Institute on Community Integration (UAP), University of Minnesota.