On Stimulating Change: An Editorial on the Role of UAPs

"If you don't know where you are going, any road will do."
-Lewis Carroll

For individuals with disabilities and their families, the way services and supports have been delivered has experienced significant change over the years. Although many of these changes have been met with resistance, most have moved the delivery of services and support toward the realization of meaningful, valued and active participation by individuals with disabilities in their local communities. Few can argue that such change has not served to enhance and improve the quality of the lives of individuals with disabilities and family members. Imagine if there had been no such change, if services and supports had not evolved and grown based upon our collective wisdom, values and experiences? Imagine if the following developments had not occurred: Individuals with developmental disabilities now live with support in towns and cities throughout our state and are no longer institutionalized simply because of their disability. In fact, in New England today threat or fear of institutionalization has been eliminated in New Hampshire, Vermont and Rhode Island. Institutions in these states have been closed in favor of community living options.

Maine is scheduled to close Pineland Center in April, 1996. Children with disabilities are significantly more likely to receive their education in regular classrooms in local neighborhood schools. Segregated schools and classrooms, often removed from one's local community, are no longer the rule. Individuals whose behavior challenges, frustrates, and overwhelms their families, teachers and support providers are significantly less likely to be slapped, pinched, secluded and otherwise hurt under the guise of treatment. Positive supports include enhancing one's choice, communication and control, providing meaningful, valued activity, and building self esteem and respect. These are strategies that have demonstrated that alternatives are realistic and possible.

Individuals with severe disabilities now have the opportunity to own their own homes. With individually designed supports, anyone can be supported to live in their own homes in the ways in which they choose. Congregate living situations are becoming a part of history.

Unlike Carroll's characters, we do know where we are going. Individuals with disabilities, their family members, providers and policy makers now envision a support system that values community inclusion; this means active and meaningful participation in the pulse of community life, real jobs, self determination, and choice.

Individuals with disabilities and their families have begun to demonstrate that all of this is possible. In Maine there are numerous examples of these practices. What we do and how we provide supports must be measured against its consistency with our values: Does the direction we are headed maintain us on the road to realizing our vision? Is any change we are proposing likely to get us closer to our vision? These are the questions that must guide each and every step of our journey.

The Center for Community Inclusion & Disability Studies and the more than fifty other University Affiliated Programs across the country have a particular mission. Our responsibility is to assist individuals with disabilities, families, friends, providers and state agencies to create changes in the ways supports and services are provided. The values and vision that guide change must enhance and promote the interdependence, productivity and inclusion of individuals with disabilities. This is our role and our responsibility as a UAP. Thus, the Center for Community Inclusion and Disability Studies exists to provide interdisciplinary education, community services, research and policy analysis, and information dissemination based upon current and potential benefits to the lives of Maine citizens with disabilities. While we often struggle to stay focused on our vision, we cannot stray, or we may lose our way. We will plant seeds and nurture ideas on this road by challenging talented students, empowering individuals and their families, and supporting those committed to this most challenging journey. Together we will realize our everchanging vision of what can be.

Debbie Gilmer

Centerpoint is the newsletter of the Center for Community Inclusion and Disability Studies, Maine's University Affiliated Program.

In complying with the letter and spirit of applicable laws and in pursuing its own goals of pluralism, the University of Maine shall not discriminate on the grounds of race, color, religion, sex, sexual orientation, national origin or citizen status, age, disability, or veterans status in employment education, and all other areas of the University. The University provides reasonable accommodations to qualified individuals with disabilities upon request. This publication is available on audiotape and upon request this material will be made available in other alternative formats to accommodate the needs of individuals with disabilities.

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