Self Advocacy
Position Statement on Self-Determination For People with Down Syndrome
By the National Down Syndrome Congress and the National Down Syndrome Society

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, the exercise of 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
  • 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.

For more information about Down syndrome and self-determination, please contact NDSS, NDSC (www.ndsccenter.org), or:

National Program Office on Self-Determination
Self-Determination for Persons with DD
7 Leavitt Lane, Suite 101
Durham, NH 03824
Telephone: (603) 862-4810
Website:  www.selfdetermination.org

Source:  National Down Syndrome Society, (800) 221-4602, www.ndss.org