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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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."
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.
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
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: