The DD Act’s Self-Determination Principles

Research Spotlight

March 3, 2011 Prism Newsletter
By Ann Cameron Caldwell

The role of The Arc’s Research and Innovations in the Autism NOW Center is one that provides vision, connections to others in the autism and disability communities, and helps to generate connections to resources and others that are interested in autism and other intellectual and developmental disability issues. This column will regularly feature information on research findings, new technologies, and innovative approaches that are evidence based or considered best practices. All information that we share – and in fact, all of the Autism NOW Center’s activities – are in alignment with the Self-Determination Principles that are outlined in the Developmental Disabilities Assistance and Bill of Rights Amendments of 2000 Act. I thought that perhaps this first column may be a good time to revisit the DD Act; in it are many powerful statements. Here a just a few.

“Congress finds that:

1) disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society…

(27) SELF-DETERMINATION ACTIVITIES. -The term ”self-determination activities” means activities that result in individuals with developmental disabilities, with appropriate assistance, having-

(A) the ability and opportunity to communicate and make personal decisions;

(B) the ability and opportunity to communicate choices and exercise control over the type and intensity of services, supports, and other assistance the individuals receive;

(C) the authority to control resources to obtain needed services, supports, and other assistance;

(D) opportunities to participate in, and contribute to, their communities; and

(E) support, including financial support, to advocate for themselves and others, to develop leadership skills, through training in self-advocacy, to participate in coalitions, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.”

(Full text of the DD Act is available at the Administration for Children and Families’ website.)

Some of these statements may be familiar or unexpected, depending on your own perspective of disability and experiences in your community, your culture, and your family. Even for me, a seasoned professional and a mother of a teenager with Down syndrome, these words feel like they are chiseled into white marble in some forever monument that I visit from time to time. They, and those who wrote them for me and my son and for all of us, fill me with a sense of awe. Yet, these words do not need to be distant; they can be alive and actionable in our lives for those of us connected to autism or other intellectual and developmental disabilities. Developing new understandings about what is possible and setting goals occurs over time and in a continuum that is defined by each of you. We encourage families and individuals that identify as having autism or other intellectual and developmental disabilities to read the DD Act to understand what the law states about people with developmental disabilities, to read about the recognition by our government that people with developmental disabilities are valued, and to read about the systems that provide different aspects of supports for people with developmental disabilities and their families. Our funder, the Administration of Developmental Disabilities (ADD), is an important part of ensuring that these programs are in place and is an excellent resource to families and individuals connected to disabilities across the nation. I hope you will take the time to read the DD Act, and to visit ADD’s website to read more about what is happening now.

Ann Cameron Caldwell is The Arc’s Chief Research and Innovations Officer.

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