The following are nationwide resources for individuals of all ages living with intellectual, developmental, and/or physical disabilities, or serious injuries, and their loves ones/caregivers. We will continue to add to this list. If you would like to share a resource with us, please email your suggestion to: [email protected].
This is not our directory. If you are looking for a care/service provider that falls into one of our categories for review, please visit our directory...coming soon. Thank you!
Administration on Intellectual and Developmental Disabilities (AIDD) - State Councils on Developmental Disabilities are federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives. The 56 Councils across the United States and its territories work to address identified needs by conducting advocacy, systems change, and capacity building efforts that promote self-determination, integration, and inclusion. Key activities include conducting outreach, providing training and technical assistance, removing barriers, developing coalitions, encouraging citizen participation, and keeping policymakers informed about disability issues.
The ARC: The largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. They encompass all ages and more than 100 different diagnoses including autism, Down syndrome, Fragile X syndrome, and various other developmental disabilities. They have nearly 700 state and local chapters nationwide.
ARCH National Respite Network & Resource Center assists and promotes the development of quality respite and crisis care programs; helps families locate respite and crisis care services for children and adults with special needs in their communities; and serves as a strong voice for respite in all forums.
Autism Speaks: founded in 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
Brain Line: BrainLine is a national multimedia project offering information and resources about preventing, treating, and living with TBI. BrainLine includes a series of webcasts, an electronic newsletter, and an extensive outreach campaign in partnership with national organizations concerned about traumatic brain injury.
Coalition for Community Choice: The Coalition for Community Choice (CCC) strives to address the growing national need for affordable housing and meaningful work for individuals with disabilities by increasing the quality and supply of choices in a broad range of housing, community, and employment opportunities specifically individuals with intellectual/developmental disabilities (I/DD).
CP Family Network: Originally started by a group of families whose children developed cerebral palsy (CP) due to medical errors and birth injuries, their mission has grown to encompass much more.
Dignity Has a Voice: Dignity Has A Voice was created to tell the real story of adults with the most significant disabilities and their families, who choose employment in sheltered workshops.
Disability.gov: U.S. federal government website for information on disability programs and services nationwide.The site connects people with disabilities, their families and caregivers to helpful resources on topics such as how to apply for disability benefits, find a job, get health care or pay for accessible housing. You can also find organizations in your community to help you get the support you need.
Disabled Veterans National Foundation: The Disabled Veterans National Foundation exists to provide critically needed support to disabled and at-risk veterans who leave the military wounded—physically or psychologically—after defending our safety and our freedom. One service, among others, is they offer direct financial support to veteran organizations that address the unique needs of veterans, and whose missions align with that of DVNF.
Disability Scoop: Stayed informed and get the latest in developmental disability news.
Exceptional Lives: Helpful guides for parents of children with disabilities. The founders met at Harvard and recognized their shared dedication to helping families of children with disabilities gain better access to services and supports. They knew disability information was available, but that much of it was too general or inaccessible for families who needed it. To solve this problem, they began collaborating on technology to empower families. In 2013, they launched Exceptional Lives. Each Guide gives a step-by-step walkthrough of the topic, featuring:
- Key information from expert sources written in plain, easy to read wording
- A personalized checklist of action items, based on your answers in the Guide
- Saved progress so you can come back to your Guide at any time, on any device
Locate an Ombudsman: Find an Ombudsman, Citizen Advocacy Group (CAG), or other long-term care resources in your state or territory. Citizen Advocacy Groups are concerned citizens who advocate for quality long-term care, services and supports and quality of life for residents and consumers in their locality, state or region.
- Ombudsmen are dedicated to enhancing the lives of long-term care residents and they advocate for residents' rights and quality care; educate consumers and providers; resolve residents' complaints; and provide information to the public on nursing homes and other long-term care facilities and services.
Love Your Brain: LoveYourBrain Foundation is a non-profit organization that aims to improve the quality of life for people affected by traumatic brain injury. It was established by brothers, Kevin Pearce and Adam Pearce, in 2014. This marked the fourth year since Kevin Pearce suffered a near fatal traumatic brain injury while training for the 2010 winter Olympics.
National Association of Down Syndrome: NADS is the oldest organization in the country serving individuals with Down syndrome and their families. It was founded in Chicago in 1961 by parents who chose to go against medical advice and raised their children with Down syndrome at home. Their pioneering efforts have made it easier for later generations of individuals with Down syndrome to be accepted by their families and communities, to develop their capabilities, and to work towards independence.
National Association of the Deaf: The advocacy scope of the NAD is broad, covering early intervention, education, employment, health care, technology, telecommunications, youth leadership, and more – improving the lives of millions of deaf and hard of hearing Americans. The NAD also carries out its federal advocacy work through coalition efforts with specialized national deaf and hard of hearing organizations, as well as coalitions representing national cross-disability organizations.
National Council on Independent Living: NCIL advances independent living and the rights of people with disabilities. Over the past three decades, they have grown from a handful of advocates and the Centers they represent into a force of thousands of people with disabilities from Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) in every state and territory of the U.S.
National Disability Rights Network: The National Disability Rights Network (NDRN) works to improve the lives of people with disabilities by guarding against abuse; advocating for basic rights; and ensuring accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems. NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the Network is the largest provider of legally based advocacy services to people with disabilities in the United States.
The National Family Association of Deaf-Blind: The National Family Association for Deaf-Blind (NFADB) is a nonprofit, volunteer-based family association. NFADB focuses on advocating for the provision of the qualified personnel in the home, educational setting, and community. They are the largest national network of families focusing on issues surrounding deaf blindness. They have ways to connect with other families and resources available on their site.
National Federation for the Blind: The National Federation's elected leaders and nationwide membership are made up of blind people, their families, and friends. They have a variety of programs and services, including, among other offerings, access to the world’s largest audio information service for the blind, NFB-NEWSLINE®. It is free to anyone who is legally blind. NFB-NEWSLINE® makes over four hundred newspapers and magazines, as well as TV schedules, localized emergency weather alerts, and job listings, available on demand to blind readers by telephone, online, or via an iPhone/iPad app.
Rebuild Hope: Helping families of disabled veterans of the wars in Afghanistan and Iraq rebuild their civilian lives.
Rebuild Hope is a volunteer-driven, national nonprofit that engages thousands of Americans in a collective effort to help disabled Iraq and Afghanistan veterans and their families overcome government-created financial hardships, improve the financial management of their households, and escape unexpected poverty as they transition to civilian life.
United Cerebral Palsy: United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP and its nearly 80+ affiliates have a mission to advance the independence, productivity and full citizenship of people with a broad range of disabilities by providing services and support to more than 176,000 children and adults every day—one person at a time, one family at a time.
United Spinal Association: United Spinal Association is dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D), including veterans, and providing support and information to loved ones, care providers and professionals.
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities. VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities.
The Williams Syndrome Association:The WSA is the most comprehensive resource for people and families living with Williams syndrome as well as doctors, researchers and educators. The WSA provides resources, support and the latest medical information to help your child today and throughout his/her life. By joining, you’ll become part of the largest organization dedicated to improving the lives of people living with Williams syndrome.
