advocacy
Advocacy and resources for the entire family.
A national voice for parents of children, teens and adults with special needs. The goal is to help parents shape policy affecting people with disabilities.
Parent Advocacy Coalition for Educational Rights, based in Minnesota.
down syndrome - national/international organizations
The home page of an association that offers educational, therapeutic, behavioral and health-related services to persons with Down Syndrome and their families.
Founded in 1970 - the only organisation in the UK focusing solely on all aspects of living successfully with Down’s syndrome.
NADS was founded by parents of children with Down syndrome who felt a need to create a better environment and bring about understanding and acceptance of people with Down syndrome
NDSC a major source of support and empowerment to persons with Down syndrome and their families
NDSS is a comprehensive, on-line information source about Down syndrome
National organization promoting education, research and advocacy in the field of Down syndrome.
The PREP Program is a resource centre dedicated to the inclusion of individuals with Down syndrome in home, school and community life.
A very comprehensive web site with tons of helpful information for parents. A comprehensive American list/index of Internet resources on Down Syndrome including Web, Lists, News Groups, Chats, etc
The Arc of the United States is the national organization of and for people with mental retardation and related developmental disabilities and their families.
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disability-specific organization links
AAMR promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.
The Autism Education Network Web site was created to raise awareness about the importance of effective education programs and to help parents secure appropriate special education services for their children with autism. The Autism Education Network is dedicated to connecting parents and professionals through the Internet to influence and improve education policy and programs for individuals with autism. The site enables families and professionals to connect and collaborate with others on common interests and goals, and includes an e-learning center offering online training and seminars on special education topics and best practices in autism treatments, and an e-advocacy center which creates, customizes, and delivers e-mail alerts, take-action letters, and petitions using comprehensive legislative databases focusing on federal and state special education law directly affecting the autism community.
The Epilepsy Foundation will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through research, education, advocacy, and services..
The primary focus of the UCLA Center for Autism Research and Treatment, which is funded by the National Institute of Mental Health (NIHM, involves understanding the origins of social, communicative and language deficits demonstrated by individuals with autism. A second focus of the Center is on the design and testing of experimental treatment interventions.
UCP is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability.State of California Department of Developmental Services
early intervention
California, State of:
The Early Start Central Directory of Early Intervention Resources is a comprehensive resource for parents, family members, service providers, and members of the public that provides information on the early intervention resources available in California by county
The site includes information about current and reviewed research in motor behavior in Down Syndrome, as well as related information for parents of children with DS. Dr's Bev and Dale Ulrich and Dr Rosa Angulo-Kinzler invite you to use the site.
education
UK-based charity that works to advance the development and education of individuals with Down syndrome worldwide. The Down Syndrome Educational Trust hosts both websites. It has a wide range of invaluable information and resources and online services to the international Down syndrome community. This website has over 1,000 pages of information, equivalent to at least 6,000 printed pages.
19900 MacArthur Blvd., Suite 1050
Irvine, CA 92612
(949) 798-0790
Many Learning Program materials are available for download. You need to first register, but
registration is free. Click link to begin!
email: dsfoc@ca.rr.com
Presents techniques and materials (video tapes, audio tapes, books and computer programs) help Infants and Toddlers with Language and Reading development www.loveandlearning.com
Usborne Books at Home is an educational resource in which individuals can order excelent books to promote literacy.
family
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.
general organizations
TheArcLink.org is one of many services provided by The Arc.
Bravekids.org is the online community for children with special needs and their caretakers. The site offers message boards to give emotional support to children with special needs and parents by connecting them to others in similar situations around the world.
Children with Special Health Care Needs in California (CaCSHCN)
Children with Special Health Care Needs in California, known as CACSHCN, is a consortium whose members work toward the common goal of improving systems of care for children with special health care needs in California.
Developmental Disabilities Resources for Healthcare Providers Web site is a collaboration of California-based information and programs on developmental disabilities.
Disabled Online's Web site is dedicated to providing beneficial resources for the disabled community and their families and friends. The site offers something for everyone, including news stories, message boards, disabled topics and chat rooms.
Disease InfoSearch (DIS) is an innovative public information search tool for genetic disease information. The Genetic Alliance developed this Internet-based search tool to facilitate public access to quality lay-oriented information about genetic and rare diseases in language that is understandable and useful.
Family Village integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.
This name signifies the importance of the first five years of life, the period of time during which a child's brain develops most dramatically. Its mission is to optimize the development and well-being of all children - from before birth until age 5 - by increasing resources, ensuring access to services and improving the abilities of families, communities and service providers to give kids the best possible start in life.
LILA is a consumer-directed online project created by Los Angeles residents with disabilities based on their own knowledge of the area's independent living resources.
HaMercaz is a central resource for Jewish families raising a special needs child. HaMercaz connects parents to the programs they need and the services they want.
Welcome to Healthopedia.com, a medical and health consumer information resource containing comprehensive and unbiased information in patient-friendly language from trusted sources on over 1,500 health topics, 70 focussed health centers, and more than 11,000 drugs and medications.
The Minnesota Governor’s Council on Developmental Disabilities has created an e-learning site for its “Partners in Policymaking” program, which is a program designed to educate participants to be active partners with those who make policy and to develop partnerships that are based on positive relationships.
Project TEAMS is a grant funded by the State Council on Developmental Disabilities with the goal of promoting self-determination, self-advocacy and person-centered planning throughout the transition process.
Protection and Advocacy, Inc., (PAI) is a nonprofit agency that works in partnership with people with disabilities – to protect, advocate for and advance their human, legal, and service rights.
Special Needs Family Fun offers family fun and special needs resources to enhance the quality and fun of family life for families with disabilities.
Bullying can be as overt as one child physically abusing another child, but also can take many other subtler forms. It can take a variety of forms including:
- Physical bullying, such as hitting or punching;
- Verbal bullying, such as teasing or name-calling;
-Nonverbal or emotional bullying, such as intimidating someone through gestures or social exclusion; and
- Cyber bulling, by sending insulting messages through e-mail.
Through the Looking Glass (TLG) is a nationally recognized center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issues.
Whether you are having surgery or delivering a baby, choosing a hospital is one of the most important decisions you can make. A total of 200 California hospitals voluntarily participated in the latest California hospital experience survey, representing more than half of all eligible hospitals in the state.
World Institute on Disability (WID) is a nonprofit research, training and public policy center promoting the civil rights and the full societal inclusion of people with disabilities.
Find educational consultants, psychologists, educational diagnosticians, health care providers, academic therapists, tutors, speech language therapists, occupational therapists, coaches, advocates and attorneys for children with disabilities on the Yellow Pages for Kids with Disabilities for your state. You will also find special education schools, learning centers, treatment programs, parent groups, respite care, community centers, grassroots organizations, and government programs for children with disabilities.
government links
The Area Board protects and advocates for the civil, legal and service rights of persons with developmental disabilities, and ensures that the support and services they receive are of the highest possible quality.
The Association of Regional Center Agencies represents the autonomous regional centers in supporting and advancing the intent and mandate of the Lanterman Developmental Disabilities Services Act.
Advocacy Without Borders: Connecting Disability Rights to people and unified action - sign up for a list-serve to receive updates to CA legislative issues that pertain to the disability community
California, State of:
The California State Council on Developmental Disabilities is a federally-funded independent state agency established in federal and state law to assist in planning, coordinating, monitoring and evaluating services for individuals with developmental disabilities and their families.
California, State of:
The Department of Developmental Services is the agency through which the State of California provides services and supports to children and adults with developmental disabilities.
California, State of:
Regional centers are nonprofit private corporations that contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities. They have offices throughout California to provide a local resource
to help find and access the many services available to individuals and their families.
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California, State of:
Parents have rights and access to procedural safeguards to assure that early intervention services are provided in a manner appropriate to the child's needs and concerns of the family.
Procedural safeguards include: confidentiality, access to records, evaluation and assessment, individual family service plans, and periodic and annual individual family service plan review.
Complaints, Mediation, and Due Process Hearings
California, State of:
The Department of Rehabilitation is the agency through which the State of California provides services and advocacy resulting in employment, independent living and equality for individuals with disabilities.
DDS Safety Net is designed for clients with developmental disabilities and their families, for providers of support and services and for the staff of California's 21 regional centers. The site is dedicated to the dissemination of information on the prevention and mitigation of risk factors for persons with developmental disabilities. The site includes information from across the nation on current research and best practices and practical information directed towards improving the health and safety or people with developmental disabilities, and ensuring their protection from harm. Links to other Web sites with information on risk management and prevention are also provided.
The Department of Education is the agency through which the State of California provides leadership, assistance, oversight and resources so that every Californian has access to an education that meets world-class standards.
Head Start and Early Head Start are comprehensive child development programs that serve children from birth to age 5, pregnant women, and their families. They are child-focused programs and have the overall goal of increasing the school readiness of young children in low-income families.
health issues
To conduct and disseminate basic scientific research to better understand the complexity of individuals with Down syndrome and to utilize this knowledge to drive clinical services.
an interesting new way at looking at disability.
A pediatrician and the father of Avi, 13 years old, and Nathan, 15 years old. Avi has Down Syndrome ("DS" for short) and has inspired Dr. Leshin to write these essays about children with DS for other parents. A comprehensive site with excellent medical essays and issues common to children with Down syndrome.
The original open access comprehensive medical textbook for all clinical fields
by Greg Richards
1999 Revision - Down Syndrome Preventive Medical Check List
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A wonderful way to teach writing skills to children with and without special needs.
A wonderful resource for teaching gross and fine motor skills
The SureStep Dynamic Stabilizing System is a revolutniary concept in stabilizing the foot and ankle in children iwth low muscle tone. The advanced, patented technology of SureStep outperforms traditional bracing in addressing this type of medial/lateral instability while promoting normal function.
parent support
Down syndrome support group for parents all over the world to come together and chat about our wonderful children.
Parents interact to help meet kids' special needs. Includes support groups, assistive tech resources.
UK website for families with disabled children
Through the Looking Glass has pioneered clinical and supportive services, training and research serving families in which one or more members-whether parent or child-has any type of disability or medical issue. TLG also has diverse publications on parenting-related topics you may order.
If you are welcoming a new baby with Down Syndrome into your family, this site is very helpful.
prenatal diagnosis
Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.
publications
Down Syndrome Quarterly is an interdisciplinary journal devoted to advancing the state of knowledge on Down syndrome and will cover all areas of medical, behavioral, and social scientific research. It is published in March, June, September, and December and is distributed by subscription to individuals, organizations, and libraries.
Disability Solutions is the free publication of The Enoch-Gelbard Foundation. It's mission is: "To provide in a widely accessible manner, free of charge, information that is useful, sensitive, and current to everyone concerned with developmental disabilities: parents, families, self-advocates, and professionals." The goal is to bring current research, medical information, educational strategies, and practical suggestions to our readers in language that is easily understood.
Published ten times a year, National Down Syndrome Congress.,
EP's on-line resource. Continuing 33 award-winning years of providing information, support, ideas, encouragement & outreach for parents and families of children with disabilities, and the professionals who work with them
NDSS publishes a quarterly newsletter, Update, that is free, and a magazine for teens and young adults:
Published four times a year for a subscription rate of $10.00 a year
research
As our name implies, our Center at Stanford University was created to do research and find treatments for people with Down syndrome. Our highest priority is enhancing the lives of all people with Down syndrome. We wish to accelerate the application of research advances to the creation of effective treatments.
The Down Syndrome Research Foundation was formed in 1995 in response to the need, expressed by parents and professionals, for detailed and research-based information for themselves and for the community at large. Although based in British Columbia, the DSRF, by using technology to reach out to the Community, has found an audience across Canada.
sign language
An online American Sign Language (ASL) browser where you can look up video of thousands of ASL signs and learn interesting things about them
The largest, fast-growing popular sign language dictionary online. Approximately 3,090 signs..and still growing daily.
sites for teachers
UK-based charity that works to advance the development and education of individuals with Down syndrome worldwide. The Down Syndrome Educational Trust hosts both websites. It has a wide range of invaluable information and resources and online services to the international Down syndrome community. This website has over 1,000 pages of information, equivalent to at least 6,000 printed pages.
Comprehensive database of plans for Math, reading comprehension and other educational resources
Riverbend site - The Educational Challenges Inclusion Study
This website is dedicated to promoting inclusive schooling and exploring positive ways of supporting students with autism and other disabilities. In this web space you will find articles, web links, and resources that can be used to inspire positive change in schools and communities.
An inexpensive way to make the classroom more fun and inspire a love of reading and writing.. Primarily designed for first grade, Starfall is also useful for pre-kindergarten, kindergarten and second grade.
This website has information and products that help individuals with disabilities with healthy food choices.
Teaching by Design Ashley’s Mom, Inc. was born out of necessity for finding creative ways to provide meaningful education for children with learning differences. Exploring and designing technology solutions for today’s educational needs
Providing K-12 teachers and educators with valuable free teaching resources, quality learning materials and educational supplies at discount prices for over 25 years, Teaching Resource Center is dedicating to serving the educational community.
speech
Infants, Toddlers, and Children
with Down Syndrome
Talk Tools - Innovative Therapists International
Building the foundation for standard speech clarity and feeding skills through innovative Oral Motor Therapy Techniques
technology
This user-friendly Web site contains links to information of interest to people with disabilities, their families, employers, service providers and other community members.
DREAMMS for Kids, Inc., is an assistive technology information clearinghouse located in New York. Founded by the parents of a child with Down syndrome, REAMMS is committed to increasing the use of computers, high quality instructional technology, and assistive technologies for students with special needs in schools, homes and the workplace. Sign up for the newsletter, Directions, for technology news, training seminars and conferences, and support.
The assistive technology project of Parents Helping Parents (PHP).
Search this Univ. of Illinois site using keywords "technology and disabilities."
Universal Design for Learning (UDL) is a framework for designing curricula that enable all individuals to gain knowledge, skills, and enthusiasm for learning. UDL provides rich supports for learning and reduces barriers to the curriculum while maintaining high achievement standards for all.
websites
For ease of use we have divided the websites into the categories listed below. We realize that there are quite a few, but wish to offer the most comprehensive resources that we can. Again, please realize that this list is informational only and does not represent any endorsement.
resources
about ds
