Internet Resources for Families

Autism
www.autism-society.org
Autism Society of America is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact. The Society and its chapters share a common mission of providing information and education, and supporting research and advocating for programs and services for the autism community.

http://www.autismspeaks.org
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research; to raising public awareness about autism and its effects; and to bringing hope to all who deal with the hardships of this disorder. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Chromosome Disorders
http://www.chromodisorder.org/
Chromosome Deletion Outreach, Inc. is a non-profit organization, founded, supported, and run by parents just like you. Our children are affected by a wide range of chromosome disorders, including deletions, duplications, trisomies, inversions, translocations, and rings. Our families live around the world and CDO provides a network of support and information through an extensive library of available up-to-date articles, detailed registry, newsletters, and a listserv that’s online 24 hours a day, everyday.

http://www.rarechromo.org/html/home.asp
Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. Unique is a UK-based charity but welcomes members worldwide.

Epilepsy
http://www.epilepsyfoundation.org
The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the 2.7 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by local Epilepsy Foundation offices in nearly 100 communities.

http://www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm
National Institute of Neurological Disorders and Stroke Epilepsy Information Page. NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency.

Developmental Disabilities
http://www.thearc.org/
The Arc of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with our network of members and affiliated chapters, we improve systems of supports and services; connect families; inspire communities and influence public policy.

Education
http://www.wrightslaw.com/
Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities. Wrightslaw has thousands of articles, cases, and free resources about dozens of topics.

http://www.nichcy.org/index.html
NICHCY stands for the National Dissemination Center for Children with Disabilities. We serve the nation as a central source of information on:

Health Care
http://www.familyvoices.org
Family Voices is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs. We stay on top of public and private sector health care changes that affect our children and families through the collective efforts of our families: a volunteer Coordinator in every state; 10 Regional Coordinators; and a small staff working in several locations around the country. Together, we share the expertise and experiences of families from around the country with state and national policymakers, the media, health professionals, and other families.

Living Options in Adulthood
http://www.ncil.org/
The National Council on Independent Living (NCIL) is the oldest cross disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents over 700 organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

Medicaid
http://www.kff.org/medicaid/benefits/index.jsp
This site contains Medicaid Benefits survey data from 2003 and 2004 with information about benefits covered, limits, co-payments and reimbursement methodologies for the 50 states, the District of Columbia and the Territories. Begin on the right by searching for benefits by a state or a service.

Medication Expenses
http://www.needymeds.com/
NeedyMeds is the best source of information for people who need help with the cost of medicine and other healthcare expenses. This site is like the Yellow Pages. We do not supply medications or financial assistance but we do provide information so you can find programs that will help you.

Parenting
http://www.eparent.com/
Exceptional Parent’s on-line resource. Exceptional Parent has provided information, support, ideas, encouragement & outreach for parents and families of children with disabilities, and the professionals who work with them for 35 years.

http://www.familyvillage.wisc.edu/index.htmlx
The Family Village is a web site for children and adults with disabilities, their families, and their friends and allies. Family Village brings together thousands of online resources in a organized, easy-to-use directory. The centerpiece of Family Village is the library, where visitors can find information on over 300 diagnosis. Visitors can also learn about assistive technology, legal rights and legislation, special education, leisure activities and much more

Sibling Support Groups
http://www.thearc.org/siblingsupport/
The Sibling Support Project, believing that disabilities, illness, and mental health issues affect the lives of all family members, seeks to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues.

Last Updated: August 16, 2006