General Interest Sites
The Beach Center is a university-affiliated program that focuses on issues
facing individuals with disabilities and their familes. Their website
offers information about research, publications, resources and links.
CODI provides a long list of links to various disability-related websites,
and includes a depository of electornic disability documents dating back
to the 1990s.
The Council for Exceptional Children (CEC) is a professional organization
dedicated to improving educational outcomes for students with exceptionalities.
Its website focuses on special education issues.
The Children and Youth with Special Health Care Needs (CYSHCN) homepage
of the Data Resource Center for Child and Adolescent Health provides access
to data gathered through the National Survey of Children with Special
Health Care Needs (CSHCN). The survey provides information about CYSHCN
in all 50 states and the District of Columbia.
This site contains a long, long list of links, covering practically every
disability-related subject imaginable. Quite comprehensive and well worth
a visit, it does require some patience to sift through its vast holdings.
Disability Resources, Inc. is a non-profit organization that organizes
and publishes this website and a monthly newsletter, as well. The site
is comprehensive and easy to navigate.
This is the web version of Exceptional Parent Magazine, which
has been an ongoing resource for families with children with any disability
for many years.
Family Village is an excellent place to begin a search for information.
There is a vast library, arranged alphabetically by disability, that provides
links to basic information, web sites, list-servs and organizations. There
is also a Bulletin Board page to facilitate communication among
parents.
The Life Span Institute hosts this page, which provides information about appropriate terminology when writing or reporting on individuals with disabilities. The guidelines were developed by the Research Training Center on Independent Living.
This website has organized the disability-information world into categories,
ranging from Adaptive Equipment to Support and Assistance. It is clean,
clear, informative and easy to use.
NICHCY (National Dissemination Center for Children with Disabilities)
http://www.nichcy.org/
NICHY is a national information and referral organization and its site
contains many valuable publications, as well as a database to enable the
searcher to find national organizations that provide information to families
of children with disabilities. Its State
Resource Sheets, with their lists of governmental and non-profit
organizations that provide services to families of children with disabilities,
are invaluable.
MCHB is a bureau of the U.S. Department of Health and Human Services Health Resources and Services Administration. The Maternal and Child Health section contains many valuable publications to families
of children with disabilities. The National National Survey of Children with Special Health Care Needs Chartbook contains comparative surveys regarding children with disabilities.
The publications section on the UCLA Center for Healthier Children, Fammilies and Communiities provides valuable information for families and professionals. Listed on this page is the Experiences in Health Care for California Childrenwith Special Health Care Needs Chartbook.
Early Intervention
Early childhood links from ERIC's Clearinghouse on Disabilities and Gifted
Education.
NECTAC -- National Early Childhood Technical Assistance Center
http://www.nectac.org/
NECTAC supports the implementation of early childhood provisions of IDEA.
The site provides connections to a early childhood contacts, programs,
publications and information.
NICHCY's Parent Guide -- Accessing Program for Infants, Toddlers
and Preschoolers with Disabilities
http://www.nichcy.org/pubs/parent/pa2txt.htm
NICHCY, The National Dissemination Center for Children with Disabilities,
authors many fine publications. This one pertains to children 0-5. It
includes FAQ, a glossary and resources.
A website that provides information and links to services and supports
for families of children 0-3 with a hearing loss.
SEECAP promotes excellence in educational leadership by providing training and support for emerging and experienced administrators of early childhood special education programs.
The Zero to Three website provides information about early
childhood development for families and professionals.
Information about Specific Disabilities
There are multiple links to hundreds of diseases and disorders in this
site maintained by the Karolinska Instituet, Sweden's only medical school.
Family Village's "Library" is a rich resource for locating information
about disabilities, arranged alphabetically, and in a format like an old-fashioned
card catalog. Each disability listing includes descriptions of the disorder,
connections to websites, to listservs and to organizations that provide
support.
The Genetic Alliance maintains a database to assist families in connecting
with support and information about a very wide range of disabilities,
organized by condition, organization and service provided.
A wealth of information about rare diseases, including links to other
sites, NIH's Office of Rare Disease's website also contains information
about clinical trials and links to patient support groups.
NINDS Disorders page is arranged alphabetically. Each page provides well-written
and concise information about specific neurological disorders, and includes
listings of support organizations and further web resources.
NORD is a long-time resource for information about rare disorders. It
maintains a database with a information about over 1100 disorders; descriptive
pages include include links to organizations that provide information,
referral and support. NORD also maintains a database of organizations
and one for orphan drugs.
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