National
and International Resources
The Disability and Health
Team currently administers grants to organizations that provide
resources for a healthy lifestyle to all people with disabilities. The
specialty centers cover spina bifida, limb loss, paralysis, and
intellectual disabilities.
The Disability
and Health Team at the CDC, National Center on Birth Defects supports
the National Resource Center on Spina Bifida housed within the
Spina
Bifida Association of America. Since
1973, the Spina Bifida Association of America, which is located in
Washington, D.C., has been the nation’s voluntary health agency
dedicated to enhancing the lives of over 70,000 children and adults
who live with spina bifida. Every year, the National Resource Center
responds to as many as 10,000 questions about health care, education,
employment, and benefits. The Center draws from a variety of
publications and resources, including a network of 175 spina bifida
clinics and more than 57 local chapters.
As part of
developing the information and resource center, the Spina Bifida
Association of America recently developed a
Health Guide for
Adults Living with Spina Bifida. This guide provides health
information and resources for adults living with spina bifida to help
them manage their own health. The guide is intended to promote
independence and self care skills. It may also be used as a resource
for talking with another adult about spina bifida.
The University of Illinois at
Chicago, Department of Disability and Human Development, and
Rehabilitation Institute of Chicago, and the National Center on
Accessibility at University of Indiana jointly run
the National Center on Physical Activity and Disability (NCPAD).
Established through a CDC award in 1999, this Center serves as a national
clearinghouse to gather, organize and consolidate existing information and
to synthesize resources on
physical activity for people with disabilities, and facilitate dissemination to
consumers, practitioners, and disability and service organizations.
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The Center's Website http://www.ncpad.org
provides a searchable,
on-line database of information regarding all aspects of physical activity as well
fact sheets and
bibliographies on topics related to specific disabilities and physical
activity. Visitors can also conduct searches on
organizations, agencies, books, videos, and ways to obtain information from
multiple sources on a wide range of general or specific topics.
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A voice and TTY toll free line. Callers receive referral and individualized
information from specialists who can research specific requests and provide
materials in many topic areas.
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The Center can provide very specialized information
on topics such as programs for women, elderly, and condition-specific
disabilities as to exercise activities, measures for determining
accessible fitness and exercise facilities, referral of complex
questions to an expert panel, and a centralized source of information
and literature on physical, sensory, and mental disabilities.
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NCPAD offers a free monthly electronic newsletter. To sign up for this,
send an e-mail to Listserv@listserv.uic.edu
with this message in the body of the e-mail: SUBSCRIBE NCPAD-NEWS yourfirstname
yourlastname
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The assistive technology unit provides technical
assistance in modifications of commercial recreational and exercise
equipment and finding solutions that can match a person's interests and
abilities with the exercise task they are trying to perform.
The Amputee
Coalition of America, a CDC-grantee that is based in Knoxville,
Tennessee runs the National Limb Loss Information Center. The Amputee Coalition of
America has established a large database of literature and referral
sources to respond to the needs for information and referral, publications, prosthetic resources, and peer
support. In addition they conduct an annual meeting each summer to bring together
the Coalition's national constituency to review and advance its information sharing mission,
and clinical and outreach products. The National Loss Information Center is
the first to provide limb loss information on a national basis to
consumers, families and providers. Information venues include a magazine for consumers and providers, peer support groups, and a
Web site at http://www.amputee-coalition.org/nllic_about.html
The
Christopher and Dana Reeve Paralysis Resource Center, located in Short Hills, New Jersey, officially opened in
April 2002. This new Center is designed to help improve the quality of life for people with
paralysis. This coordinating facility houses a staff of information
specialists, a library, and a website to provide educational materials,
referral services, and self-help guidance to those living with paralysis,
their families, and caregivers. In addition to providing information
services related to paralysis, the Center also awards community-based health promotion grants twice a year. For more information,
contact the Christopher and Dana Reeve Paralysis Resource Center at (800)
539-7309 or www.paralysis.org
Promoting
Health Athletes Through Health Screenings at Special Olympics ,
Healthy Athletes.
http://www.specialolympics.org Under special Congressional funding, the CDC
Disability and Health Team provides support for the Healthy Athletes
Program hosted by Special Olympics to promote the health
of athletes with with mental retardation and other
disabilities. Funding for the Healthy Athletes Program helps expand
on-site health screening and clinical services, and various other
supports to over 360,000 athletes with disabilities who participate
in the 26 sporting events. In addition to funding,
CDC Disability and Health staff has
attended several meetings and
collaborated in the analysis of health-screening data obtained during the
Special Olympics Games.
Healthy Athletes screening data are available.
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Date: May 2, 2006
Content source: National Center on Birth Defects and Developmental
Disabilities