KYPT - Types of Disability

Down Syndrome

People with Down syndrome have been, for a long time, the “poster children” for mental retardation. As a result, a major struggle of people with Down syndrome now is to leave behind that poster child image and to be allowed to live life as they choose. The first five sites listed will give you a great deal of information about this condition. As you prepare your notebook entries, and if you want more information, the additional links offer plenty of good resources.

The Arc's Q&A on Down Syndrome by Siegfried M. Pueschel, one of the leading authorities in the field at http://thearc.org/faqs/down.html
The General Information Section at the National Down Syndrome Society has 14 topic that will expand on an d perhaps clarify information on the fact sheet. The Myths and Truths Page is highly valuable.
National Down Syndrome Society was established in 1979 to ensure that all people with Down syndrome have the opportunity to achieve their full potential in community life. Since that time, this not-for-profit organization has become the largest non-governmental supporter of Down syndrome research in the United States. Today, NDSS continues to increase public awareness about Down syndrome and discover its underlying causes through research, education and advocacy. In particular, take a few minute to check out Club NDSS, a place for people with Down syndrome and other developmental disabilities and the organization’s statement about self advocacy.
The National Down Syndrome Congress (NDSC) is a not-for-profit organization founded in 1973. The purpose of the NDSC is to promote the interests of persons with Down syndrome and their families through advocacy, public awareness, and information dissemination on all aspects of Down syndrome. You may want to take a look at the organization’s Position Statements
What's Up With Down’s Dan, a 19-year-old with Down syndrome, offers an introduction to his life and his relationship with his older sister and younger brother. Dan also offers links to the 5-Step Plan, the Social Security Administration, and the Down syndrome Medical Checklist. http://hometown.aol.com/karenl2888/dan.html

Additional Information

Down Syndrome Title Page The Down Syndrome WWW Page was established in February of 1995 and has been (and still is) compiled from the contributions of members of the Down Syndrome Listserv and others. http://www.nas.com/downsyn/
Down Syndrome: Health Issues - Medical Essays and Information Medical essays and information about Down Syndrome for parents and professionals. http://www.ds-health.com/
Family Village Down Syndrome Site Like all of the links to this group this one provides medical information, a list of contacts, mailing lists and a selection of related links at http://www.familyvillage.wisc.edu/lib_down.htm
Health Care Guidelines for Individuals with Down Syndrome [Reprinted from Down Syndrome Quarterly, Volume 1, Number 2, June, 1996] (Down Syndrome Preventive Medical Check List).
National Association For Down Syndrome is a not-for-profit organization, which was founded in 1961. It is the oldest organization in the country serving children and adults with Down syndrome and their families. NADS concentrates its energies and services primarily in the Chicago area.

The stories of other people with Down syndrome and their families

Johnson, Michael Jurogue A contemporary native artist who has Down syndrome. With beautiful colors, he expresses his own personal vision of an idyllic world where animals are the best of friends. http://www.psln.com/~sharing/Michael
National Down Syndrome Association – First-Person Stories http://www.nas.com/downsyn/donations.html Stories contributed by parents and siblings of individuals with Down syndrome. Read a letter from a mother of a 6-year-old with Down syndrome (Jessica) that she sent to Jessica's teacher, principal, and director of special education
Families Exploring Down Syndrome http://www.geocities.com/HotSprings/1369/ A web-based community for families interested in sharing ideas and information together about issues surrounding Down syndrome.
Kid's Together - Perspectives http://www.kidstogether.org/prspct.htm This website features a number of perspectives by parents, siblings and professionals concerning individuals with disabilities. For example, Lynne McDevitt, a parent of a child with Down syndrome, offers her perspective on vitamin therapy.

*ACTIVITY*

Your assignment for each of these sections is to keep a notebook in which you will answer the following questions. When you are done with this unit, show your notebook to your teacher. You should be ready for the quiz. The topics in you notebook should be:

What are the essential elements in the definition of this condition? (Can you explain this condition to your parents or classmates in a way they would understand it?)
How is it different from other conditions? (What is unique about this condition; for example, how is spina bifida different from cerebral palsy?)
Are there different forms of this condition? (What kind of variation will you see in people with this condition—do professionals have names or terms they use to describe this variation?)
What do we know about what causes this condition?
What are the difficulties a person with this condition is likely to encounter in school and in day-to-day life in the community?
What are some supports that will assist a person with this condition? (How would you answer someone if that person asked you to offer some ideas about things they could do to help a person with this condition?
What is at least one major organization that is a good source of information about this condition?
Can you list at least three major issues (problems, controversies, etc) related to this condition?
Finally, what are the major myths or misconceptions (list at least 3) that people have about people with this condition and what are some things you could do to show others the error of their beliefs?

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