Services

The NDSC works to empower its members and all people with Down syndrome by creating a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. This purpose is enhanced by the commitment of NDSC to do the following.

Promote availability and accessibility to a full range of opportunities and/or resources that meet individual and family needs
  •  The NDSC operates the NDSC Center which serves as a clearinghouse for information on Down syndrome. The Center provides up-to-date information on topics of interest to people with Down syndrome, family members, friends, professionals and interested others.
  • Down Syndrome News is published four times per year and provides information and resources on programs and services available to people with Down syndrome and the appropriateness of such programs.
  • Down Syndrome Headline News, a newsletter by and for people with Down syndrome, is published two (2) times a year and focuses on the accomplishments of people with Down syndrome and information of importance to self-advocates.
  • Governmental Affairs Newsline is the electronic newsletter of the Governmental Affairs Department. It is emailed to anyone who wishes to participate in the listserv.
  • The Annual Convention provides both plenary and workshop sessions detailing state-of-the-art services and how to access these services.
Build a sense of community and fellowship for all people with Down syndrome

The NDSC annual convention provides an intense educational and networking experience for all attending. It provides an opportunity to make and renew friendships and to experience first hand the fellowship among parents, youth and adults with Down syndrome, siblings and other family members.

Affiliate leaders also have an opportunity to learn and network at a pre-conference session just for them. Affiliates LEAD is a seminar for board and staff members of Down syndrome parent organizations. Each year the Seminar also offers one or more speakers on topics that have ranged from media relations to Down syndrome research. Additionally, Down Syndrome News highlights the accomplishments of local parent support groups and of people with Down syndrome and encourages the sharing of information with NDSC as well as among Parent Support Groups and between individuals.

Provide leadership in the formation of public policy

Among the NDSC’s official purposes is “to address the social policies and conditions that limit the full growth and potential of children and adults with Down syndrome”. The Congress addresses this purpose is many ways, filing briefs of Amicus Curiae in federal district courts, state supreme courts and the US Supreme court in cases of national significance. The NDSC provides testimony and public comment on legislation and regulations being proposed that affect people with Down syndrome. The NDSC staff and volunteers are active in many national and state advocacy efforts such as “The American Association on Intellectual and Developmental Disabilities”., The President’s Committee on Employment of People with Disabilities, State Developmental Disabilities Councils, Special Education Advisory Councils, etc. The NDSC Governmental Affairs Director educates our members with up-to-date information on the status of legislation and regulations affecting persons with Down syndrome.

Provide ethically responsible research related to all aspects of Down syndrome

The Professional Advisory Council is composed of experts from many fields who work with people who have Down syndrome. One of the Professional Advisory Council ‘s primary functions is to serve as a resource for the National Down Syndrome Congress center staff. When the center gets questions, they have a wealth of knowledge and experience to draw upon to give our members the most accurate up to date information. The Professional Advisory Council members also contribute to the Down Syndrome News and web site and frequently present at the annual convention.

Educate professionals, parents and the community in all aspects relating to Down syndrome

The NDSC Center provides information and assistance to parents, family members, professionals and interested others on issues that affect people with Down syndrome. Through our publications, the Down Syndrome News and Down Syndrome Headline News, and on our web site, we provide accurate up-to-date information on Down syndrome and the issues affecting the lives of people with Down syndrome and their families. The annual NDSC convention provides workshops on specific areas of interest to people concerned with Down syndrome.

Foster self-advocacy and acknowledge the importance of self-actualization for people with Down syndrome

The NDSC provides through its annual convention a forum for people with Down syndrome to learn self-advocacy skills and to participate in the decision making process of the NDSC by electing 3 board members to the NDSC Board of Directors. NDSC through a special newsletter, The Down Syndrome Headline News, written by and for people with Down syndrome is published 2 times per year, highlights the accomplishments of people with Down syndrome and provides information of interest to the self-advocate.

Recognize and advance the full range of rights for all people with Down syndrome

The NDSC is the major advocate for people with Down syndrome. Its voice is heard by the federal government and by agencies and organizations nationwide. Through its Governmental Affairs Director, the NDSC provides direct input into the legislative process in regards to education, employment, health-care, community living and other areas of importance to those we serve.

Promote full participation of people with Down syndrome in all aspects of community life

The NDSC has been in the forefront promoting full participation in community life for people with Down syndrome through national advocacy efforts, training, information dissemination, articles in the Down Syndrome News, the Down Syndrome Headline News and Governmental Affairs Newsline. The Youth and Adult Conference at the annual NDSC convention focuses on living independent lives and participating more fully in the community including work, recreation and leisure activities as well as living independently. All information and assistance provided by NDSC is written to promote inclusion in all areas of community life.

Recognize the variability of personal needs and respect individual choices

The NDSC celebrates each person with Down syndrome as a unique, valuable and valued human being. All of the activities of the NDSC are based on the philosophy of individual choice. The NDSC educates interested people regarding Down syndrome and the issues affecting the lives of people with Down syndrome and their families to enable them to make decisions that are right for themselves and their families in their particular circumstances.

Develop and disseminate position statements on major issues related to Down syndrome

The NDSC has developed various position statements which have been revised, deleted or added to over the years. Our current position statements may be found by visiting our Position Statements page.

Provide a network for linking of state and local groups and affiliates

The NDSC offers an affiliation membership to local and state parent organizations. Membership in the Affiliate Parent Support Group Network entitles members to Down Syndrome News, Down Syndrome Headline News, Governmental Affairs Newsline, a training seminar providing continuing education information and networking opportunities at the NDSC Annual Convention and unlimited resource support from the NDSC Center. The Center maintains a directory of local parent support groups and local resources for each state. Callers to the NDSC center are directed to the local parent support groups and resources for the state in which they live.

Foster and enhance relationships within the NDSC and the broader disability community

Collaboration with other organizations is a priority of the NDSC. NDSC works together with organizations including NDSS, the Consortium for Citizens with Disabilities, TASH, The ARC, the National Service Inclusion Project, and others.The NDSC Governmental Affairs has forged strong alliances with other organizations to ensure that the interests of people with Down syndrome are heard. The Board members and staff of NDSC actively participate in many disability and community groups within their prospective states and nationally.