Organizations That Help Support & Assist People With Down Syndrome

According to the National Down Syndrome Society, Down syndrome (DS) "occurs when an individual has three, rather than two, copies of the 21st chromosome." A fairly common genetic disorder, DS can affect people of any race or economic status. At this time, neither cure nor prevention for DS is possible, although genetic research may eventually lead to solutions.



When parents give birth to a Down syndrome baby, an intense learning experience begins for all. All the challenges and needs of any new infant arise, with the extra responsibilities and learning curve of Down syndrome. Fortunately, many organizations will assist new parents every step of the way in every area of life.

National (United States)

• The National Association for Down Syndrome (NADS) is located in the Chicago area, but offers information on DS, advice for new parents, resources, contact information for local support groups and DS news. The National Down Syndrome Congress page is a clearinghouse of information on Down syndrome, covering health care, educational needs, speech and language, DS in the community, work and play plus a variety of information for parents. The National Down Syndrome Society's mission is to advocate for people with Down syndrome. It offers a free helpline, information on developmental stages in DS, and policy and research initiatives. It has more than 300 affiliate groups that offer local help and support to parents of children with DS.

Support Groups

• Advice offered to parents with a prenatal diagnosis of Down syndrome is to connect with other new parents of babies with DS for support and answers to inevitable questions and concerns. Local family support groups exist in all areas of the country. Contact one of the national DS organizations to find the one nearest you. Call about support groups and to connect with other families. Discover what options and choices you have, and all the challenges and rewards of children with DS. Special support groups for offer advice to siblings, grandparents and friends of the family.

Medical

• Many medical challenges may be in the offing for children with DS, such as heart problems, risk of leukemia, epilepsy and gastrointestinal issues, as well as delayed developmental growth. A pediatrician and parent of a child with DS, Dr. Len Leshin, created a webpage of potential DS health issues which includes a list of DS clinics nationwide and a comprehensive Health Care Guidelines for People with Down Syndrome.

Education

• From early intervention, physical, speech, language and occupational therapies and integrated involvement in primary education, local and national DS organizations can provide information, advice and assistance in these areas. Down Syndrome Online, an international organization, focuses on educational issues with a host of publications and information.

Advocacy/Legal

• Parents of a child with DS will face many institutional challenges: for instance, medical insurance companies, hospitals, government agencies and educational institutions. To get the best for their children, parents must learn to negotiate and cut through the red tape. Advocacy organizations exist to aid parents and families with this, such as the Down Syndrome Advocacy Foundation, UNTAPE and Parent Educational Advocacy Training Center.

Discussion Forums

• NADS offers a discussion forum on its webpage, although registration is required. Down Syndrome: For New Parents also has a forum section where anyone can discuss issues concerning people with DS in a variety of topics. Forums put people in touch with others vitally involved in similar situations.