Out of My Old Life

I grew up in three New York institutions.  In 1982, when I was 21, I moved into a group living […]

I grew up in three New York institutions.  In 1982, when I was 21, 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 learn 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 way 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 to 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 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 the 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.

Michael Kennedy was formerly the Self-Advocacy Coordi­nator at the Center on Human Policy at Syracuse Univer­sity, and is currently a consultant to the Center.

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