Stories of Self-Determination

How self-determination Changed my Life
by Arthur Streisfeld as told to John Kelly

My name is Arthur Streisfeld. I am a 54 year old man with a developmental disability. I was 52 when I got involved with self-determination. self-determination changed my life.

Except for a short time in 1982, when I lived in Florida on my own, I had lived at my home with my parents all my life. I have always been someone who likes to work, and have worked at several different jobs, off and on, since 1969. I have been steadily employed since 1988. I have had 4 jobs since then, but each new job was an attempt to better myself. I have worked as a stock clerk, assembly line worker, sales assistant in a shoe store, shipping and receiving worker, and an aide at my Temple. Since March of 1996, I have worked at the YM/YWCA. I started out in the laundry, but now work the front desk, and am an attendant in the Nautilus room.

When I was 52, I realized that it was time to move out on my own. There was tension at home and my parents, who were aging, I knew would not be able to take care of me all my life. The first situation I looked at was a group home in Tuckahoe, New York. I went there for a weekend visit, and didn't like it. There was not enough privacy, and although I didn't have a curfew, I also didn't have my own key. It was not what I was looking for. I wanted to be more independent, and in control.

At this point, my Service Coordinator told me about self-determination. We decided to do a proposal that would allow me to move into place of my own, on my own. we submitted it to the first self-determination pilot at Hudson Valley DDSO, and I was selected to participate in the pilot.

There were two things we needed to do to prepare me to go after my dream. First, we did Person Centered Planning, to help me identify the steps I would need to take, and the supports I would need. Then I had to build a Circle of Support. My father became ill and passed away in the beginning stages of my self-determination project. But, my mother, Helen, and sister Robbie, both strong women, and my brother in law Morris, support me and along with my Service Coordinator and friends I have made since becoming involved with self-determination, make up my Circle of Support. They help me make decisions, give me the information I need to make good decisions, and encourage me.

Once planning had been done, and my Circle was in place, I started to look at places to live. I knew I wanted to live near my mother, who lives in Yonkers, and my sister, who lives in Scarsdale. I also wanted to be close to transportation, so I could get to work. I pride myself on being a good worker. I am reliable, and always on time.

I looked at 2 or 3 places before finding my current home, a co-op in Scarsdale. I had to go before the Co-op Committee and be interviewed before I would be allowed to rent. I moved into my co-op on September 28, 1998, just 6 months after becoming involved with self-determination. My apartment is in walking distance to the bus I take to work, it is also close to stores, a mall, restaurants, and a movie theater. I also live close to my mother and sister.

When I moved into the apartment, I needed some supports. I hired some Res Hab staff from a traditional agency. I became dissatisfied with the services they were providing, so I decided to look elsewhere. With my mother's help, I found Martha. Martha is a neighbor who lives upstairs. Martha comes in for a couple of hours a few days a week, and helps me go shopping, sometimes helps me cook, and helps me read the newspaper. She's staff, but she's also a friend. I have also hired people to help me budget, and help me learn to use the computer. I want to increase my computer skills, so I can get a better job. I also talk to Martha, and other members of my Circle by e-mail.

I control my budget with the help of my brother in law, who is my fiscal coordinator.

This past summer, I decided I would like to buy the apartment I am living in. I am very happy here. It took months. I had to apply for a mortgage. Go through another interview process with the Co-op Committee. Get an attorney, and become involved with the Home of Your Own Program. It was not an easy process, and it took a long time, but on March 17, 2000, I closed on my apartment, and am now a home owner.

I have done a couple of presentations about self-determination to individuals, parents and staff, at training's and at conferences. I would like to do more, and tell people about my life. I am hoping to get involved with AmeriCorps this year, and am looking for a mentor. As a member of AmeriCorps, I would go out to schools, agencies and groups and talk about what it is like to be a person with a developmental disability, and how self-determination changed my life.

Lastly, I would like to say that self-determination is not easy. Self-determination is hard work, and I had a lot of people, members of my Circle, who worked hard and helped me. My dream was to have an independent life, in my own home, and to have control over my life. Any dream worth having is worth the hard work it takes to get it. I would recommend self-determination to anyone who wants to pursue their dream.

Self-determination by Scott Wing

Self-determination is being able to do stuff you don't get a chance to do because you are stuck under Medicaid. It will open doors you wouldn't have attempted to open. I wanted to take more control of what I do during the day instead of begin told where I had to report to at some day hab. Having my own van and support people will give me more opportunities. I volunteer at the hospital and am looking for more volunteer jobs. I was asked to be on the advocacy board for the Center of Human Policy. I am trying to make myself more available to community efforts. I'll be able to go to sporting events, shopping and to visit people when I want to go. My dream is to be more self-reliant and not to rely on my mom and others to get me what I want. I think I'm growing as a person each time I obtain my goals.

I want people getting into self-determination to know that the process of the pilot took a long time. I wish I had kept a diary to record all the different meetings. People need to make sure they have a good service coordinator who is able to make weekly contact and stay informed. I'd like to be a liaison for other people getting into self-determination.

Self-determination and the Circle of Support
written by Laurie James (Lori Kelso's Service Coordinator)

Lori Kelso has been involved in self-determination for over a year. She is very clear in her goals and has a wonderful positive attitude. Lori has grown in many ways, most especially in her ability to advocate for herself. The Circle of Support played a very big role in many ways for Lori. Her outgoing personality made it possible to assemble many family members, friends, professionals and support staff as a part of her large circle. One of Lori's main goals was to move into her own house. She felt it was time to live on her own. Lori and her parents were concerned with safety, security and 24 hour staffing in the home when she moved. They felt that having a certified site with state control would secure this requirement. There were several other members of the circle that felt that Lori would be safe and much happier if she had complete control of her environment. It took several meetings with different residential agencies before we found an agency that was able to convince Lori and her family that they could provide the safety and 24 hour staffing in a non-certified setting. The agency did need to secure funding that would allow for the 24 hour staffing to occur. Lori asked several of her members to meet with state officials to investigate some funding possibilities. Through self-determination, the discussion was opened and considered. Lori will be able to move into her new home in September with a temporary budget arrangement as we await for the Consolidated Supports and Services (CSS) budget to be activated. One of the things that was interesting to see from the Circle of Support meetings were the different experiences and perspectives that everyone brought. It was important to allow each member to have time to contribute their own thoughts and feelings about various issues that arose. Lori admitted that she lacked some of the skills and knowledge about her options and was cautious about making changes. The most difficult challenge was securing a roommate who was compatible with Lori. It takes time to develop trust and a relationship with someone. Lori had one roommate participate in her Circle for 6 months only to find that they really weren't compatible. Although, they still remain friends, their differences were too great to reside together. Lori found another roommate through the roommate matching network. Since Lori really wanted a roommate, both perspectives (Lori's and her roommates) needed to be considered when planning future housing. As the Circle, it was important to keep in mind who was the person we were planning for and what were her main goals. Lori wants to secure employment with a local preschool where she has been volunteering for several years. She would like to continue her education in early childhood in the near future. Lori has really enjoyed the opportunity to participate in AmeriCorps and has become quite a recognized speaker on issues of self-determination, self-advocacy, and disability awareness. Lori also feels that it is important to keep a positive attitude and not get discouraged. She was used to having other people make decisions for her and lacked experience in the decision-making area. She often depended on the Circle to redefine things in a way she understood; explaining acronyms and technical language. Lori also felt more secure having a Circle to share feelings, thoughts and ideas. Planning takes time and as a Circle we needed to give Lori time to experience new things and feel confident with her decisions.

Flexibility and Creativity: A Promising Start
written by: Jackie Yingling

Unless you have had the police in your home at 3:00 am, you can’t imagine what families like ours have gone through. Our 16-year-old daughter, Rachel has developmental disabilities, but impacting our lives even more is her sleep disorder, related to her overall disability. Rachel does not have the same sleep schedule as the rest of us. She can be awake until 2:00 or 3:00 am several nights in a row. She becomes frustrated, as we do, and sometimes her behavior turns violent as her obsessive compulsive tendencies take over as she becomes tired and irritable. Our nights had progressively become worse for many years until we finally reached the crisis stage. Every night Rachel would start trying to go to sleep, than as sleep eluded her, she would become obsessive and violent. It was getting to the point that Rachel's little sister was being awakened by the behaviors. We tried everything over the years: counseling, crisis intervention, rewards, consequences, medication and changes in rooms and more. Nothing worked and we ended up in a pattern of behavior that was destructive to all of us. We eventually called the police one night at 3:00 am but never utilized that option again, as the police couldn't really do anything. “Do you want us to take her away?” they asked. “No.” we responded. We didn't want her taken away.

We want Rachel to live with us until she is an adult and can purchase her own home, having input about the people who provide her supports. Until recently, we just didn’t know how we were going to survive that long. We dreaded each night and were truly desperate. Rachel was able to go to neighbors houses for sleep overs and was able to overcome her obsessive tendencies and sometimes even want to sleep before midnight. We knew that she would “be good” for other people. We knew that the answer was to find some way for someone else to “help put her to sleep”. But we knew that there was nothing like that in the current service delivery system.

It was during a visit with a new neurologist that we developed a spark of hope. He said, “What you need is a bedtime buddy. You need to capitalize on Rachel’s motivation to please other people. You need someone else to sit with her while she goes to sleep.” Those words were our lifesaver. Here was a professional saying what we had been thinking, someone who did not make judgments about our parenting skills and why we couldn't make her stay in bed. Someone who could recognize the desperateness of the situation and come up with the simplest solution, a solution that allowed Rachel to remain living in our home. But now the problem was how to fund this solution.

Rachel was already approved for the Medicaid waiver and service coordination. We thought that the only option would be to try to get residential habitation services to pay for an aide to come into our home from the hours of 9:00 pm to 1:00 am. The difficulties in obtaining this seemed daunting. First, we needed people to understand that it was necessary. Then there was the fact that we would have no choice in selecting who would be hired. We definitely did not like this, as the person would be entering our home and therefore, our lives, on a pretty intimate basis. We were also concerned about them being close to Rachel, in proximity, and as a role model and provider of support. Lastly, we thought that we would have to supplement the salary for the person, as we wanted to attract the best person and entice them to stay in the position.

The obstacles were overwhelming. But then we heard about the pilot self-determination project in New York State. Through Rachel’s service coordinator, we applied and to our absolute delight, Rachel was the youngest person in our state to be accepted. The very first thing we asked to receive approval for funding for the “bedtime buddy”. This concept has proven to be successful for our family and for Rachel. We have all had more sleep in the last six months than anytime in the last six years. The tension in our household has lessened to a degree that we hadn't known possible.

The reason that this has worked so well is because the system is flexible. We were able to choose the providers and instruct them in the support Rachel needs. We have recruited local college students, a mother in our town, our neighbors, high school students on weekend nights, and even family members. This allows us to have peace of mind, for Rachel to enjoy the visits, and for the support to be more natural. The importance of maintaining as much normalcy as possible in this unusual situation cannot be measured. It means so much to us as a family. We can live together and stay healthy by getting more sleep and having less volatile nights. Most importantly, to Rachel, is her image of herself as a person who has control of her emotions and can be an enjoyable companion to others. A positive side effect is that she is able to develop a relationship with the caregivers. She is able to have some quiet time before bed playing games, reading to and just visiting with the people who come into our home. And we are comfortable because we have hired the person, usually someone we know already.

I can honestly say that without Rachel's participation in the self-determination Project, our lives would have been devastatingly changed. We were on a path of despair and destruction. It was only a matter of time before Rachel, under traumatizing circumstances, would have been removed from our home and the neighborhood she loves. Now we are looking forward to continuing her high school years, maybe even college year or two, and building her life in our community. She has hopes and dreams that we can plan for. Her future can be bright, we can be creative, and we are all getting a little more sleep.