For most of my younger life, I lived in residential facilities that were operated by the developmental disabilities service system. There were many things I didn't like about getting services from “the system.” I didn't have the control I wanted and had to do what the system decided was best for me. I didn't have the opportunity to hire or choose the people who were going to work for me. I just didn't feel that these services fit my needs or what I wanted out of life and that they didn't care that they did not. They didn't seem to be able to think outside the box, and they didn't seem to want to take the risk of doing things differently or letting me select and train the people who were going to work with me, even though in the long run it might have been less expensive to let me have more control.
I knew that I was dissatisfied, but I didn't know how to go about making changes in my life. I hadn't taken many risks myself, and there wasn't a program that would let me make changes without risking everything. I need total physical care because I can't do many things for myself, except for eating and driving my wheelchair. Then, in 1992, a local agency began a program called Self-Directed Personal Services (SDPS). This program helps you to recruit, hire, and train personal care assistants. A county office worker comes in and assesses how many hours of service you need per month, but SDPS and you take over after that point. They help you to write up an ad if you need help with that, do background police checks on applicants, handle the paperwork and the payroll (SDPS is the employer of record even though the consumer is the real employer), train the consumer on his or her responsibilities in the program, and give basic training to personal assistants on things like SDPS policies, CPR, how to lift, things like that. From that point on the consumer does the training. After that, SDPS gets involved only if you have a problem.
I signed up for this program shortly after it began, and I've never wanted to go back to the traditional models I had been in before. With SDPS, I felt as though I had left “the system,” even though I still have personal assistance services.
I was married August 7, 1993, and my wife is just as independent as I am. She has a disability, too, but has never needed personal assistance services. By marrying me, she came into a whole new world because I have to have personal assistance services 7 days a week. This meant that she had to get used not just to living with me, but also to having someone else in her home every single day. It was very difficult for her to adjust to that, but she came to understand why it was necessary. She would try to help me herself, but she found out that she didn't have the physical strength to do it. Even though we both wanted more time to be by ourselves, we had to accept the loss of privacy. I told her that I didn't like it, either, but there was no other way around it. The first 3 years of our marriage were the hardest, because I was used to it but she wasn't, and it was hard for us to come to a common understanding about how we felt about it. We spent a lot of time talking about how best to handle the situation, and we finally resolved it. We both learned that we had to make compromises. For example, I had to accept going to bed early so that we could have time alone some evenings, and she had to accept having people in our home. Another adjustment we've made is that my wife comes home from work and goes to a private room, while I work with my personal assistant. At first she thought she should be a part of it, because they were doing housework and cooking for me, but I told her that this is my responsibility. Now she has more time for herself.
To her, the assistants were strangers, while to me they were close to friends or family. Now that's changed, and she feels close to many of the people who work for us. There was one person who worked hard to let her know that he's there for her, too, at least emotionally, and they are now like brother and sister. This is a person she disliked intensely at first. He is a great guy, but she tried to get me to fire him years ago. Now they are the best of friends.
Living a Normal Life
Since I've been on my own, I've grown to feel more like a part of the community. I'm not under a system any more, not a number or a bed or a slot. I really started to feel a part of the community when we bought our house. We were scared because neither of us knew anything about owning a home, but we took the bull by the horns. We bought it from a friend who has a disability, so it was already accessible. One thing we liked about the house was that there was an apartment upstairs.
We decided to hire a personal assistant who would live upstairs. That seemed like a good idea because then we wouldn't have to worry about emergencies, bad weather, etc. For example, if something were to happen in the middle of the night, someone would be there to help.
The person we hired was also our renter and our friend. It turned out that this became a problem. He was married when he moved in 9 years ago, and they've since had two children (we are their godparents). They've lived there for 9 years, but I've had to ask them to move and to stop working for me. I gave him plenty of time after he stopped working for me, so that he could find another job and place to live. They have since moved out.
With them moving, we can build up the friendship between us to what it once was. We won't have any responsibilities toward each other except for the friendship and our godparent roles with the children, whom we love. I learned a valuable lesson through all of this. From this time on, we will have a lease for our renters, and there will be fewer expectations between us. Our renters will not also be our employees, and we won't expect them to be close friends. It will be more of a business relationship—that is, we'll be friendly and we'll provide a nice apartment for them to live in, and they will pay rent. We have hired an apartment manager to oversee the whole process— putting an ad in the paper, screening the applicants, showing the apartment, renting it, and taking care of maintenance. This will eliminate a lot of the frustrations we dealt with before.
For me, living a normal life means having to deal with problems. It means learning that things don't always work the way you assumed they would. I am glad that we took the risk of renting to an employee because it taught us so much about the approaches we need to take in the future.
Living a normal life also means getting to choose when, where, and how you need to go on vacation. In my case, I also have to build in the kinds of supports I'll need. My wife and I went on a cruise this summer, along with a friend who did my personal care. If I were still a part of the system, I think I might have been told, “Oh, no, you can't spend that kind of money,” and they would have tried to direct me to vacations that were less expensive. This cruise to Nova Scotia and New Brunswick was something that we really wanted to do, but what I wanted would probably not have been the primary consideration if I were still in the system. And we wouldn't have wanted to go in a group to make it less expensive or “safer.” We did this the way we wanted to do it, with the budget that we created for it.
Another part of our lives is that we go to a wonderful church. We usher every few weeks. Not long ago, my wife and I were honored with a gift that was totally a surprise to us. It was to honor our dedication and commitment to our faith and to the church. The pastor said, while he was announcing it, that she and I don't let our disabilities stand in the way of our responsibilities, and that we are always there with smiles on our faces even when we have troubles in our lives. This pastor has helped us with the problem with our renters, so he knew about the trials we were facing over the last couple of years. He knew how difficult our situation was and how vulnerable we are, in a way.
Help That is Not Help
Because we are trying to live a normal life, we sometimes get help that is more of a hindrance. We don't rely just on the service system to help us. For example, a woman usually gives my wife a ride to church. One night she couldn't go, so my assistant gave my wife a ride there, with the plan that when the service was over she would ask someone to give her a ride home. The man who volunteered had good intentions, but he didn't listen when my wife tried to tell him how she would get into his truck. She knew how to get into a truck, but he didn't have the patience to wait for her to do it and he tried to pick her up. He stopped when she told him to, but my wife could see that he was frustrated. When she got home, she decided that from then on she would not go to church if the woman who usually drives her could not go.
Another example is when I hire someone and begin to train him or her. Some of the people I hire don't listen when I tell them how to do something. They just want to do it their own way rather than the way I need them to do it. For instance, there is a safe way to pick me up when I have to move from my chair. When people don't do it the way I try to tell them, they will pull a muscle or hurt their backs or legs. After a while, they learn to do it my way and when they do they find that the pain has gone away. If someone who is not my aide, such as someone at church, is trying to help, this can be a problem if they don't listen. I look as though I am very lightweight, but my muscles stiffen to the point of rigidity if someone is picking me up the wrong way and that makes it almost impossible for them and for me.
I have to have support at work as well as at home. I hire someone to provide this support, but I get frustrated because there is a lot of turnover in that position and because it is very difficult to find someone who has all the skills that I need for the small amount of money that the program I use can pay. Also, the personal assistants aren't paid health benefits, so there is a high turnover rate. My personal assistants need health benefits just like anybody else. If they received these benefits the turnover rate would not be so severe, and I would have more of a chance of keeping staff longer, which would benefit my life and meet my needs. I need someone who can help me figure out my thoughts when I write, who can organize my schedule, who can do my personal care, and who is reliable. I've had a few good ones who are reliable and can do all aspects of the job, but not many. Lately, I've had to hire someone new once or twice a year, and I might go for months without anyone while I'm trying to find the right person. This is very frustrating for me. I feel as though I spend more time looking than actually working with a person.
Years ago, I wrote an article called, “The Disability Blanket” published in Mental Retardation (Kennedy, 1994). I feel as though I've dealt with that blanket all my life. In your home, you choose when and how often you want to use your blankets and what you want to use them for. However, if you're a person with a disability, it's like the service system already has the blanket set out for you. This might not be the one you want or need, especially because you didn't choose it.
What I would like to see happen, for people with all types of disabilities, would be for us to sit down with the people who provide services, tell them what are the goals and expectations we have for our lives, and really work together on making them happen. I'd like to see this done without so much paperwork and red tape and with respect for our privacy. If we could get out from under the disability blanket, the world would look different for us. We'd still get services but they wouldn't be programs. We'd have our privacy because all the details of our lives wouldn't be written down for everyone to see. Professionals would treat us like they would want to be treated. They would appreciate our strengths. They'd consult us about what we want and need and how they could help us to live as independently as we can. We might have goals for our lives, but they wouldn't have to be written down and reviewed and updated regularly in team meetings. We would be asked to evaluate the services we receive instead of always being evaluated. The people who would be in our lives would include our families, our friends, and professionals, but it would be a balanced mixture instead of the people all being professionals. We'd hear about more of our options, and we'd get support in choosing what best fits our wants and needs. The bottom line would be that the person with the disability would make the final decisions.
I do feel that people are trying to improve the services we get; but we all need to work together and listen to each other. We all need to share the responsibility to make the changes happen. That means we have to be equals. Why can't we just take that old blanket, fold it up, and put it away? Then we'd have life itself, with all the choices and ways of living that everyone else has. Personally, I have put that old “Disability Blanket” up for good, and I am moving forward with life's ups and downs just as everyone else does!
Author: Michael J. Kennedy, Center on Human Policy, 805 S. Crouse Ave., Syracuse, NY 13244-2280. firstname.lastname@example.org