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Self-determination: Making dreams come trueBy Susan Cohen Nicole is a young New Yorker with a developmental disability who had big dreams; she wanted to live independently in the community. In a traditional program plan in New York, she typically would be assigned to a day treatment program and would be living in a group home, regardless of her dreams. But thanks to the vision of self-determination, the Self-Advocacy Association of New York State and the Office of Mental Retardation and Developmental Disability (OMRDD), Nicole is not living the traditional way. She is in her own apartment, with staff that she has hired, in a job that she likes. For transportation, she uses her own wheelchair-accessible van. “The idea of bringing self-determination to New York state came about in 1997, when a group of self-advocates attended a national conference on self-determination,” said Steve Holmes, executive director of the Self-Advocacy Association of New York State. The principle elements of self-determination, as defined by SANYS, are freedom, control, authority, support, a portable budget and the contribution of self-advocacy. “Self-determination turns the system upside-down and begins to allow individuals to decide, rather than the agencies, what services they will receive,” said Jim Huben, program planner of the Developmental Disabilities Planning Council. The DDPC has also provided funding to support self-determination in New York state.
The first major pilot project in New York in which self-determination received funding was through the collaboration of SANYS and OMRDD. A new funding mechanism, Consolidated Supports and Services, was developed as an alternative to the traditional agency model. “It is now possible for an individual with a developmental disability to have control over whom they hire and which services are provided to them,” Holmes said. “It can be used for both living situations and employment.” In order to qualify for CSS, individuals must be receiving or be eligible to receive services from OMRDD, be part of the Medicaid Home and Community-Based Waiver programs, and have a service coordinator. Each person using CSS hires a start-up broker, who will assist the individual in developing a circle of support, a person-centered plan, a weekly schedule of supports, and a budget, which covers all aspects of the person’s life, including the cost of services received. According to Holmes, the self-determination model places a lot more responsibility on the shoulders of the individual and his or her circle of support. “Instead of an agency doing all the paperwork and managing the staff, the individual and/or the circle of support now does it,” he said. “It is similar to the Consumer Directed Personal Assistant Program. If a person does not show up for work . . . it will be up to the person receiving services to find a replacement. This has been shown to be challenging for the individual receiving services.” Another challenge of CSS “is finding and maintaining a circle of support,” Holmes said. In traditional services, important decisions are made without the individual with a disability present. Those decisions usually are made by the clinical team. Under CSS, however, it is the individual’s family and friends who make up the circle and assist the individual in making important decisions. The circle is instrumental in the process; it meets throughout the planning process and after the plan has been approved. “It’s important to keep the circle motivated and involved,” Holmes said. Said Huben: “As a pilot project, CSS has been helpful in showing that individuals with disabilities want more freedom to make life choices, hire their own staff and decide what services they want. However, many of them do not want all the paperwork and responsibility for full self-management. It has made some of the obstacles clear and will ultimately lead to a better self-determination project. Currently, self-determination is evolving so that it will offer individuals the option of how much responsibility they want to take on. We are working with agencies to collaborate with individuals so that the services that are provided from an agency are custom-made to meet the individual’s needs.” It has been a challenge to get the word out about this relatively new program. Self-determination is especially relevant for individuals with developmental disabilities who seek more independence and/or are unhappy with their current support services. Staff members of independent living centers can assist by identifying individuals with developmental disabilities who wish to have a greater role in making life choices. Individuals with developmental disabilities who are unhappy with their working or living situation may find solutions through self-determination. Most states have some kind of self-determination program in place, although the terminology and funding mechanisms may differ. For more information, find the Self-Advocacy Association in your state and/or call the Developmental Disability Service Office. “CSS has given me the freedom to be myself, to do the things I enjoy, and to give back to the community,” said Scott Wing, a CSS participant. ****** Susan Cohen, who lives in New York, is the project coordinator for NYSILC and is a trained start-up broker in the Self-Determination Project. She can be reached at sdaretodream@aol.com PLEASE NOTE: PORTIONS OF THIS WEB SITE ARE UNDER CONSTRUCTION! |
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