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Self-Determination & Self-Advocacy:
Encouraging youth to develop their own voice and set their own goals

"One of the biggest challenges that parents of individuals with Down syndrome face is helping their children achieve as much independence as possible in their lives. This relates to school, career, living options, and to various types of relationships. One very important relationship where such independence is desirable is that between an individual and his or her health care provider.

During adolescence, teens with and without disabilities experience many changes in their bodies and in their self-image. One way to promote independence and a healthy view of one's self is by helping adolescents to take responsibility for their own health care needs, including visits to their health care provider. Self-advocacy is the knowledge, willingness, and ability adolescents must have to be able to communicate their needs and desires about issues that are important to them. Below are some guidelines for parents to consider regarding health care."

Source: Down Syndrome Guild of Dallas Texas. "Teaching Self-Advocacy for Health Care." http://www.downsyndromedallas.org

Realizing the importance of self determination for the lives of persons with Down syndrome, members of the National Down Syndrome Congress and the National Down Syndrome Society drafted the "Position Statement on Self-Determination for People with Down Syndrome."

The self-determination movement makes it possible for people with Down syndrome to have greater control over all aspects of their lives.

Self-determination is built on the core principles of freedom, authority, support and responsibility for all people with disabilities:

  • Freedom, to exercise the same rights as all citizens: to establish where they want to live, with whom, and how they will use their time
  • Authority, the control over sums of money needed for one's support: development of an individual budget which "moves" with the person.
  • Support, the organization of these resources as determined by the person with Down syndrome and his or her allies: contracting for specific tasks for which one needs assistance.
  • Responsibility, the wise use of public dollars; includes the obligation of people with Down syndrome to contribute to their communities in meaningful ways.

People with Down syndrome have the right to:

  • Be treated as individuals;
  • Not be discriminated against at work or in the community;
  • Make informed choices about their lives including where to live, with whom to socialize and live, and where to work;
  • Have opportunities for socialization within the community;
  • Have the necessary support to enable them to make responsible choices;
  • Speak and to be listened to;
  • Have access to community services and education;
  • Have privacy to spend time as they wish;
  • Be safe; and
  • Grow into responsible adults.

While opportunities and services for people with Down syndrome have continued to expand, this often occurs within the context of a service agency, group living or school environment. The existing "systems" need to focus on changes that enable people with Down syndrome to be fully included in the life of the community. This can only occur through inclusion and self-determination.

The National Down Syndrome Congress and the National Down Syndrome Society fully support self-determination for all people with Down syndrome, and agree to make self-determination a major priority in each of our organizations.

Used with permission from the National Down Syndrome Society. http://ndss.org