AAMR promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.
General Organization Links
Disability-Specific Organization Links
The Autism Society of America promotes lifelong access and opportunity for all individuals within the autism spectrum, and their families, to be fully participating, included members of their community.
Working together, Autism Speaks and Cure Autism Now's goal is to change the future for all who struggle with autism spectrum disorders. They are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. And they are committed to raising the funds necessary to support these goals. 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.
Be sure to check out the newly launched (October 2007) ASD Video Glossary, an innovative web-based tool designed to help parents and professionals learn more about the early red flags and diagnostic features of autism spectrum disorders (ASD). Visit the glossary »
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 Developmental Services is the agency through which the State of California provides services and supports to children and adults with developmental disabilities.
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 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.
UCP is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability.
General Organization Links
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; a directory of healthcare resources based on zip codes for children with special needs, which enables caretakers to easily locate healthcare resources and support for ill children in their community; the most recent and accurate medical information for family members, as well as providing illness-related information to the children in a fun, interactive way so they can understand what's happening to them; and interactive games and contests for for children with special needs.
California Nursing Home Search is a resource designed to help the general public, health care professionals and other interested parties find information on nursing homes in the state of California. The Web site features information on each nursing home and includes facility and resident characteristics, nurse staffing levels, quality performance indicators, results of complaint and inspection visits, financial indicators and ownership. Facilities can be searched for using location, name, services offered, certification and ownership type.
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, and includesCalifornia Children’s Services Medical Branch, Los Angeles Partnership for Special Needs Children (LAPSNC), Family Voices of California (FVCA), Children’s Regional Integrated Service System (CRISS) Project, USC University Center for Excellence in Developmental Disabilities (UCEDD) at Childrens Hospital Los Angeles. They launched an online newsletter in July 2006 that features a calendar of events, state health news, announcements, national health news, and various resources. If you would like to contribute news items, please submit via e-mail to email@example.com. If you have any questions about the newsletter, contact Kathryn Smith, MN, RN at firstname.lastname@example.org. To receive CaCSHCNews, send an e-mail message to email@example.com with“CaCSHCNews” in the subject line. The newsletter will also be available for downloading at www.uscucedd.org. Download the July 2006 inaugural issue of CaCSHCNews >>
Developmental Disabilities Resources for Healthcare Providers Web site is a collaboration of California-based information and programs on developmental disabilities. It is funded by the California Department of Developmental Services and coordinated by the Center for Health Improvement (CHI), a prevention-focused health policy center. The primary goal of this Web site is to improve the health of persons with developmental disabilities in California. To this end, the Web site is designed to assist physicians and other healthcare providers in caring for persons with developmental disabilities. It is also designed to support persons with developmental disabilities and their families in making informed health care decisions. The information in this site includes medical care information for specific syndromes and related issues, health provider educational opportunities, speaking opportunities, publications, and links to selected Web sites.
Disability Rights California (DRC) is a nonprofit agency that works in partnership with people with disabilities – to protect, advocate for and advance their human, legal, and service rights.
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. Pull-down menus exists for the following categories: education, employment, government, home and living, legal, medical, organizations, recreation, shopping, travel, chat, and forum.
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. DIS is a robust catalogue of genetic conditions - rare to common - that is searchable according to Clinical Description (signs & symptoms), Treatment Research, Genetic Information (molecular), Support Groups & References (newsletters, listservs, self-help books), Insurance Issues, Arts & Literature and Other Resources. This dynamic and up-to-date public information system is driven and maintained through the expertise and vigilance of disease-specific lay advocacy organizations and their professional advisory boards; editorial review and quality control are provided by genetic counselors that staff the Genetics Education and Resource Center.
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.
First 5 LA was created to convey the overall purpose of the organization charged with distributing the Prop. 10 tobacco tax funds. 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. The First 5 LA name replaces the previous name (Los Angeles County Children and Families First - Proposition 10 Commission) and will be used in all efforts and serve as an easily identifiable brand for the programs and services implemented under Prop. 10. First 5 LA addresses an urgent societal need to support and strengthen families with young children. 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. Visit the site to learn more about the different ongoing projects and partnerships.
NexCare Collaborative, a not-for-profit organization funded by First 5 LA to developed and operates the First 5 LA Connect helpline (888.347.7855) and Web site. This free, multi-cultural and multi-ethnic Web site and helpline telephone service, provides services to the population of Los Angeles County to enhance the successful development of children during their formative first five years. The Web site aims to ensure that children develop in a healthy way –- both physically and emotionally -- in the early years, and helps prepare them for school and a successful future. Equipped with the most up-to-date research, the First 5 LA Connect staff and Web site disseminates information about distinctive resources throughout Los Angeles County. Information, referrals, and support for expectant parents, parents and caregivers of children up to the age of five will be made available to everyone in need. Information is separated into four main categories - mommy, daddy, baby and family.
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. Thanks to this new one-stop approach, now there’s a single, toll free number that connects you to a world of support including: help for families with newly-diagnosed children, on-going assistance and support for families with children from birth through age 22, connections to a network of community agencies and resources, support groups/counseling, connections with special needs programs in the Jewish community at synagogues, schools and camps.
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.
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.
The Office of Clients' Rights Advocacy (OCRA) is part of Disability Rights California. OCRA is funded through a contract with the California Department of Developmental Services. OCRA has been providing advocacy services to regional center clients, their families, and interested community members since 1999. OCRA provides legal services to clients of all 21 regional centers throughout California. This is done by having a Clients' Rights Advocate (CRA) designated for each regional center catchment area. The CRA can help with legal problems, conduct trainings, and investigate denials of rights.
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. Project TEAMS’ Web site provides a platform to inform and educate families, teachers and students with developmental disabilities about self-determination, career development and transition planning. In addition to an abundance of resources, the Web site also contains an extensive glossary of terms related to transition. The Web site is updated frequently and will be maintained indefinitely.
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. Considered to be a serious public health problem in the United States, between 15 and 25 percent of students are bullied with some frequency, and 15 to 20 percent of students bully others with some frequency. Bullying is defined as aggressive behavior that is intentional, repeated over time and involved and imbalance of power or strength. 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.
Bullying causes as many as 160,000 students to stay home on any given day because they are afraid of being bullied. In order to combat this problem, Health Resources and Services Administration's Maternal and Child Health Bureau launched a national bullying prevention campaign – Take a Stand. Lend a Hand. Stop Bullying Now! One of the key components of this campaign is the campaign’s Web site that can be viewed at www.stopbullyingnow.hrsa.gov/index.asp. The Web site features both a youth site and an adult site. The youth site is divided into three sections: “What bullying is,” “What you can do,” and “Cool stuff.” The adult site features information about bullying, children who are bullied and children who bully, and the things that you as an adult can do to put a stop to bullying. An important tool also featured on the Web site is the comprehensive kit of bullying prevention materials.
TheArcLink.org is one of many services provided by The Arc.
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. TLGs mission is "To create, demonstrate and encourage nonpathological and empowering resources, and model early intervention services for families with disability issues in parent or child, which integrate expertise derived from personal disability experience and disability culture." The idea behind the name of the organization comes from the idea that disability does not have to be just negative or traumatic, but rather that disability brings new perspectives that can engender creativity and new meanings - even playfulness and humor. Through the Looking Glass' National Resource Center for Parents with Disabilities provides information, referral, publications, training and consultations regarding parenting with a disability with a special focus on custody, adoptions, adaptive baby care equipment, pregnancy and birthing. The Center also offers a parent-to-parent network, professional trainings and workshops, a newsletter, national library and resources clearinghouse, and bulletin board.
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. The WID Web site features a wealth of information on WID programs such as California Work Incentives Initiative, Disability Benefits 101, California Work Incentives Initiative Links, Individual Development Accounts (IDA) Program, Individual Development Accounts (IDA) Program Publications, Individual Development Accounts (IDA) Program Training, Health Access and Long Term Services (HALTS), International Disability and Development, Disability World, Proyecto Visión, and Technology Policy. Also accessibly on the site are publications and reports, upcoming events, training and public education opportunities, news and a resources section that offers a list of links on a variety of topics such as ADA, consumer-directed services, employment and work supports, entrepreneurial opportunities, health care, independent living, lifestyle, media, Medicare and Medicaid, and technology and access.
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.
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 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.
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.
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.
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.