Just for Parents (and Service Providers)

This section lists our favorite sites for parents of children with disabilities and the professionals who work with them.
(If you’re looking for other parents whose children have the same condition or problems as yours, see our section of Matching Services. If you’re a parent who has a disability, check our page for Parents with Disabilities. Other related subjects appear at the end of this listing.)
Beach Center on Families and Disabilities
The Beach Center on Families and Disability is a rehabilitation research and training center on public policy affecting families who have children with disabilities. The professionally oriented web site contains research and related information. A separate area is devoted to positive behavioral support.
Children with Disabilities
Jointly sponsored by nine federal agencies under the umbrella of the Coordinating Council on Juvenile Justice and Delinquency Prevention, this site “presents families, service providers, and other interested individuals with information about advocacy, education, employment, health, housing, recreation, technical assistance, and transportation.” It is particularly useful for its well-organized links to federal and state resources.
Children’s Defense Fund
The Children’s Defense Fund is an advocacy organization for children, especially poor and minority children and those with disabilities. Its web site is filled with information, especially relating to issues of concern for people with low incomes.
Family Village
When we first reviewed Family Village, a virtual village of links and support for parents of children with disabilities, we called it the best site of its kind, and gave it our first red star. The extensive site includes a “library” with general and disability-specific subject links, message boards, chat groups, a shopping mall, and more. Alas, our 2001 visits were disappointing; most of the excellent library pages have not been updated for a long time, and many of the links are broken.
Family Voices
Family Voices is “a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs.” Its web site includes a bimonthly newsletter and weekly news update, as well as information about the organization and its publications.
Inclusion & Parent Advocacy: A Resource Guide
Disability Resources’ guide to print and audiovisual materials for parents, educators and child care providers features over 250 books, videos, and other materials for parents, teachers and service providers. Download the introductory chapters and title list.
Institute for Child Health Policy
The Institute focuses on children in managed care with special a emphasis on children with special health care needs. Its web site offers a wealth of information about policy/program development, health services research and evaluation programs.
Internet Resources for Special Children (IRSC)
An extensive and well organized collection of links.
Kids Together, Inc.
Nicely arranged by subject, this parent-oriented web site includes general information, short documents, and annotated links relating to children with disabilities.
KidsHealth [added 6/8/01]
Sponsored by nonprofit Nemours Foundation, this extensive website features separate sections for parents, kids and teens. The parents’ section has thousands of easy-to-find, health-related articles; though not specifically geared to parents of children with disabilities, it includes many good articles about specific conditions. The upbeat kids and teens sections likewise include information about specific disabilities and chronic illnesses as well as information that will interest all young people.
Nacersano.org [added 2/1/01]
Bienvenidos! This March of Dimes website was developed “to help serve the growing need for education in maternal and infant health for the Spanish-speaking community in the U.S. and around the world.” It includes an online health library with information on preparing for pregnancy, the effects of alcohol, tobacco and stress during pregnancy, prenatal and newborn tests, and more.
National Center for Education in Maternal & Child Health (NCEMCH)
Dedicated to improving the health of children and families through national leadership in state-of-the-art knowledge, program development, and policy analysis and education, this organization’s professionally-oriented links include access to its extensive databases and publications.
National Fathers’ Network
“Dedicated to providing support and resources for fathers and families of children with special needs,” this site is packed with information by and for fathers of children with disabilities (including articles in Spanish), photos, a special section for providers, and much more.
 National Information Center for Children and Youth with Disabilities (NICHCY)
NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. NICHCY’s web site features its excellent fact sheets, resource guides and other publications about specific disabilities and disability-related issues. Many of the publications are available in Spanish.
National Parent Network on Disabilities (NPND)
Information, legislation, advocacy, and more. This website is especially valuable for its current information and links relating to “hot issues” and legislation affecting children with disabilities.
Our Kids
The home page of a wonderful online support group for parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. The site includes subscription information and archives, members’ home pages, links, resources, reading lists, and more.
PACCtips [added 2/26/02]
Sponsored by the Pediatric Alliance for Coordinated Care (PACC) at Boston Children’s Hospital, this nifty website offers families the opportunity to share approaches, equipment, supplies that have worked for them. “These tips come from families’ own experiences, from trial and error, from their own invention and creativity. Most of these tips can not be found in books or even given to you by your medical providers.”
Parents Helping Parents, Inc.
The web site of this family resource center includes an extensive, easy-to-search database of national organizations involved with children with disabilities.
Pediatric Database (PEDBASE)
This database contains basic medical information about 550 “childhood illnesses,” including many rare disorders. The entries may be viewed online, and the entire database can be downloaded.
Points of Pediatric Interest
A good guide to medical and related information from John Hopkins University.
Sibling Support Project
This web site is packed with resources and ideas for siblings of children with disabilities and their parents and service providers. Includes a national directory of sibling support programs and newsletter.
Special Child Magazine
An online magazine for parents. Sections include success stories, horror stories, family issues, tips, special children, and a handy bulletin board.
 T.A. Alliance for Parents (PACER Center)
“The Technical Assistance Alliance for Parent Projects (the Alliance), focuses on providing technical assistance for establishing, developing, and coordinating parent training and information projects under the Individuals with Disabilities Education Act.” Its web site includes a national calendar, legislative information, web links, lists of organizations and parent centers, and information about Supplemental Security Income (SSI), and more. Future developments will include electronic study teams for and several databases.
Welcome to Holland
Disability Resources Monthly readers often ask us where to find “Welcome to Holland,” Emily Perl Kingsley’s short inspirational piece about the experience of raising a child with a disability. Here are some online sources:
Welcome to Holland (from the Down Syndrome WWW Page)
Welcome to Holland (from the I-CAN web site)
Welcome to Holland (from the Our Kids web site)
Related subjects:
Early Intervention
Just for Kids
Matching Services
Parents with Disabilities
Specific Disabilities
Supplemental Security Income (SSI) for Children
Toys for Kids with Disabilities
“Wish” Organizations
Resources in your state
This month in DRM

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