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Article 4. Supports to Families, Professionals and Individuals with Down Syndrome

Most countries and localities have organizations that are committed to improving the lives of individuals with Down syndrome (DS) and their families. There are DS groups at the local, regional, and national levels in Italy, Spain, France, Hong Kong, Germany, England, Canada, Australia, Zimbabwe, the United States, and so on. These organizations often provide support, information and encourage scientific investigation. As examples, I spoke with representatives from two groups in the United States about the activities they currently offer:

NATIONAL DOWN SYNDROME CONGRESS (NDSC)

The Congress is a parent support group providing referral and resource information to families, friends, professionals and individuals with Down syndrome. Resource materials include position statements (e.g., vitamin and cell therapies), general information packets, parent packets, and bibliographic information on specific topics, including a list of augmentative communication referrals and information about the use of sign language/total communication with children who have DS.

For more information, contact the National Down Syndrome Congress, 1800 Dempster Street, Park Ridge, IL 60068-1146 or call their 800 number (800) 232 NDSC.

NATIONAL DOWN SYNDROME SOCIETY (NDSS)

Founded in 1979, the goals of the NDSS are to:

•promote a fuller understanding of Down syndrome and the potential of persons with DS by providing services/programs that disseminate accurate, up-to-date information to parents and professionals.

• encourage dedicated scientific research into the causes, effects, and cure of Down syndrome. For example, the NDSS awards $25,000 grants in their Science Scholar Program and publishes a Proceedings from the annual International Scientific Symposium.

• provide services to help individuals with DS and their families live richer, healthier and happier lives. Services offered include a model respite care program, a computer education program, a clinical care program, a Hotline and an affiliates program.

In August, 1993, the International Down Syndrome Conference, sponsored by the NDSS and the European Down Syndrome Association, will be held in Orlando, Florida. Delegates from 80 countries are expected.

For information contact: NDSS 666 Broadway, New York, NY 10012. (212) 460-9330, (800) 221-4602 or check the phone book for the group closest to you.

More give and take among AAC professionals and manufacturers and national and local groups is likely to increase awareness of the variety of AAC options, now available over their life-span, to individuals with DS. Another advantage would be to encourage needed investigations into the effectiveness of various AAC aids and techniques with individuals who are born with Down syndrome.

This article appears in ACN Volume 5, # 3.

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