Resources and Links
National OrganizationsNational Down Syndrome Society (NDSS)
666 Broadway, Suite 810, New York, NY 10012
Tel.: (800) 221-4602 or (212) 460-9330; Fax: (212) 979-2873
Website: www.ndss.org; E-mail: \n info@ndss.org
Through education, research and advocacy, NDSS seeks to improve the lives of individuals with Down syndrome and their families.
Association of University Centers on Disabilities
1010 Wayne Avenue, Suite 920, Silver Spring, MD 20910
Tel.: (301) 588-8252; Website: www.aucd.org
AUCD has 67 UCEDDs with at least one found in every state and territory in the U.S. Each is affiliated with a major research university.
American Association on Intellectual and Developmental Disability (AAID)
American Association on Mental Retardation (AAMR)
444 North Capitol Street, NW, Suite 846, Washington, D.C. 20001-1512
Tel.: (202) 387-1968 or (800) 424-3688; Fax: (202) 387-2193; Website: www.aamr.org
AAMR promotes policies, research, effective practices, and universal human rights for people with intellectual disabilities.
National Information Center for Children and Youth with Disabilities (NICHCY)
P.O. Box 1492, Washington, D.C. 20013
Tel.: (800) 695-0285; E-mail: \n nichcy@aed.org ; Website: www.nichcy.org
An information clearinghouse, providing free information on disability-related issues, ages birth to 22.
The Arc
1010 Wayne Avenue, Suite 650, Silver Spring, MD 20910
Tel.: (800) 433-5255; Website: www.thearc.org
The Arc provides advocacy and other services for people with mental retardation and their families.
Down Syndrome Health
Down Syndrome Health http://www.ds-health.com/ by Len Leshin, M.D., F.A.A.P. Author's note: I'm a pediatrician and the father of Avi, 13 years old, and Nathan, 15 years old. (Photos!) Avi has Down Syndrome ("DS" for short) and has inspired me to write these essays about children with DS for other parents. I have put them here for general reading. I have also included some other pediatric items of interest for parents.
Universal Design for Learning Universal Design for Learning (UDL)
Universal Design for Learning Universal Design for Learning (UDL) is a framework for designing curricula that enable all individuals to gain knowledge, skills, and enthusiasm for learning. UDL provides rich supports for learning and reduces barriers to the curriculum while maintaining high achievement standards for all.
http://www.cast.org/research/udl/index.html
New Website For Individuals with Disabilities & their Families
The new Family Support Center on Disabilities: Knowledge & Involvement Network (going by KIN) website offers an on-line centralized resource on a full range of information and resources for individuals with disabilities and their families.The website is part of The Administration on Developmental Disabilities (ADD) which is the U.S. Government organization responsible for the implementation of the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known
as the DD Act.
http://www.familysupportclearinghouse.org/Pages/Home.aspx
Physician & Professionals DS Information Packets Now Available
Acton Up with Downs’ Physician and Professional
Information Packets are available to provide doctors, obstetricians,
pediatricians, nurses, social workers, therapists and other professionals
with the most current information about Down syndrome. We are currently
compiling our distribution list and welcome healthcare professionals
to call and request these materials.
Also, The National Down Syndrome Congress has created a guide to assist
physicians facing the challenge of informing parents that a child has or
may have Down syndrome. http://ndsccenter.org/physiciansguide
Following is a letter written by Dr. William Cohen,
national leader in the Down syndrome movement who died on February 6,
2009 Dear Health Care Professional,
Today, people with Down syndrome are achieving more than ever thought possible.
People born with Down syndrome, who only twenty five years ago may have
been institutionalized, are now living independently and semi-independently,
obtaining paid employment, graduating from high school and attending post-secondary
schools. They are musicians, artists, actors and athletes. People with
Down syndrome have friendships and meaningful relationships and marry.
While it is important to avoid placing unrealistic expectations on children
with Down syndrome, they should be challenged to do their best and follow
their dreams-just like any child.
As health care professionals, we are in a unique position
to both shape parents’ first impression of their child and also
to guide that child’s health throughout his or her life. From the
moment of diagnosis, it is important to deal with each child as an individual
with unique strengths and challenges.
The world is changing for people with Down syndrome and the medical community
must also change. We must challenge ourselves to recognize and overcome
our stereotypes and to treat these children and their families with the
highest level of care. I believe we are up to the task.
William Cohen, MD
Director, Down Syndrome Center
Auxiliary Faculty, The "UCLID" Center at the University of Pittsburgh
Professor of Pediatrics and Psychiatry, University of Pittsburgh School
of Medicine
Child Development Unit
Children's Hospital of Pittsburgh