This page lists by topic area a collection of organizations, journals, and online resources that provide information about treatment, support, or services for people with disabilities, as well as their families and professionals who support them.
On this page:
- Caregivers and Caregiving.
- Children and Teens.
- General Family Resources.
- Older Adults.
- Parents with Disabilities.
- Parents of Children with Disabilities.
Carevigers and Caregiving
- AgingCare.com.
AgingCare.com is an online support and information website comprised of millions of family caregivers that helps inexperienced, untrained family members facing the challenge of caring for elderly loved ones. The online community provides a meeting place for the free exchange of ideas with knowledgeable professionals, responsive experts, and other caregivers. Website includes a Caregiver Forum, local and national information on home care and housing, Caregiver Support and Eldercare resources, and a section on dealing with financial, legal, and insurance issues, including Medicare.
- ARCH National Respite Network and Resource Center.
The mission of the Resource Center is to assist and promote the development of quality respite and crisis care programs in the United States; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums. They publish the “ABC’s of Respite: A Consumer Guide for Family Caregivers”, available to download in PDF format.
Contact Form.
- Caregiver Action Network (CAN).
CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Phone: (855) 227-3640; (202) 454-3970.
Email: info@caregiveraction.org.
- Family Caregiver Alliance (FCA).
FCA provides services to family caregivers of adults with physical and cognitive disabilities, such as Parkinson’s disease, Alzheimer’s disease, and other types of dementia. Their services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Provides resources for caregivers and professionals.
Toll Free: (800) 445-8106, (415) 434-3388.- Family Caregiver Navigator is a clickable map that helps family caregivers locate public, non-profit, and private programs and services nearest their loved one, living at home or in a residential setting. Resources include government health and disability programs, legal resources, disease-specific organizations, and more.
- Family Caregiver Navigator is a clickable map that helps family caregivers locate public, non-profit, and private programs and services nearest their loved one, living at home or in a residential setting. Resources include government health and disability programs, legal resources, disease-specific organizations, and more.
- National Association for Home Care & Hospice (NAHC).
NAHC is the nation’s largest trade association representing the interests and concerns of home care agencies, hospices, home care aide organizations, and medical equipment suppliers; and is dedicated to making home care and hospice providers’ lives easier.
Phone: (202) 547-7424.
Fax: (202) 547-3540.
Contact form.
- Well Spouse Association (WSA).
The Well Spouse Association is a peer-to-peer support group for husbands, wives, or partners of chronically ill, injured, or individuals with a long-term disability. WSA is a community of active spousal caregivers and former caregivers that offers support groups, an on-line chat room and forum, bi-monthly weekend respite events, and a national conference.
Phone: (732) 577-8899; Available Monday through Thursday from 9 am to 2 pm ET.
Email: info@wellspouse.org.
- Women’s Institute for a Secure Retirement (WISER).
Wiser is a nonprofit organization that works to help women, educators, and policymakers understand the important issues surrounding women’s retirement income.
Phone: (202) 393-5452.
Fax: (202) 393-5890.
Email: info@wiserwomen.org.- Financial Caregiving Hub is a one stop clearinghouse for financial caregivers and care recipients.
Children and Teens
- ChildHelp.
ChildHelp aims to address the immediate consequences of child abuse and helps to create a foundation for long-term healing and prevention. ChildHelp strives to empower children and families to lead healthier, more secure lives.
Phone: (480) 922-8212.- ChildHelp’s National Child Abuse Hotline is available to call, text, or chat 24 hours a day, 7 days a week, 365 days a year and is available in 170 languages.
Phone: (800) 422-4453.
- ChildHelp’s National Child Abuse Hotline is available to call, text, or chat 24 hours a day, 7 days a week, 365 days a year and is available in 170 languages.
- Council for Exceptional Children (CEC).
CEC is the largest international professional organization dedicated to improving the success of children, teens, and young adults with disabilities and/or gifts or talents. CEC provides information, resources, and professional development for special educators.
Toll free: (888) 232-7733; (703) 620-3660.
Email: service@exceptionalchildren.org.
- Kids Together.
Kids Together is a non-profit all-volunteer organization that promotes communities that welcome all abilities and the removal of barriers that exclude children, teens, and adults with disabilities.
Emai: staff@kidstogether.org.
- National Center on Birth Defects and Developmental Disabilities (NCBDDD).
NCBDDD seeks to identify the causes of birth defects and developmental disabilities; help children to develop and reach their full potential; and promote health and well-being among people of all ages with disabilities. Offers factsheets and information sources on each of their four focus areas: saving babies, helping children, protecting people, and improving health.
- Support for Families of Children with Disabilities (SFCD).
SFCD ensures that families of children with disabilities or special health care needs have the knowledge and assistance that they need to make informed choices that support their child’s health, education, and development.
Phone: (415) 282-7494.
Email: info@supportfamilies.org.
General Family Resources
- Beach Center on Disability at the University of Kansas.
Together with families and individuals affected by disability, the Beach Center on Disability strives to make a significant and sustainable difference in the quality of life of families and individuals. Provides scales, guides, and evaluations that professionals may use to support the families that they work with.
- Caregiver Health Self-Assessment Questionnaire.
This questionnaire was originally developed and tested by the American Medical Association and may help caregivers look at their own behavior and health risks. With the help of their healthcare provider, the questionnaire may also help caregivers make decisions that benefit themselves and the people that they provide care for. Available in multiple formats.
- Family Voices.
Family Voices is a family-led organization that transforms systems of care to work better for all children and youth, especially those with special health care needs or disabilities.
Toll Free: (888) 835-5669; (781) 674-7224.
- KidsHealth.
KidsHealth is the largest and most-visited site on the Web providing doctor-approved health information about children from before birth through adolescence. KidsHealth has separate areas for kids, teens, and parents — each with its own design, age-appropriate content, and tone. Created by The Nemours Foundation's Center for Children's Health Media.
- National Endowment for the Arts (NEA) – Accessibility Resources.
This is a partial listing of resources compiled by NEA’s Office for Accessibility.
Phone: (202) 682-5400.
- Support for Families of Children with Disabilities (SFCD).
Ensuring that families of children with any kind of disability or special health care need have the knowledge and assistance they need to make informed choices that support their child’s health, education, and development.
Phone: (415) 282-7494.
Warmline: (415) 920-5040.
Fax: (415) 349-5194.
Older Adults
- Administration on Aging (AoA).
AoA is the principal agency of the US Department of Health and Human Services designated to carry out the provisions of the Older Americans Act of 1965. Provides home and community-based services to older adults, including transportation, adult day programs, caregiver supports, and health promotion programs.
- American Association of Retired Persons (AARP).
AARP is the nation’s largest nonprofit, nonpartisan organization dedicated to empowering Americans 50 and older to choose how they live as they age. AARP advocates for what matters most to older adults and their families and works for individuals in the marketplace by sparking new solutions and allowing carefully chosen, high-quality products and services.
Toll Free: (888) OUR-AARP (888-687-2277); (202) 434-3525 (International). Available Monday through Friday from 8 am to 8 pm ET.
AARP Fraud Watch Network Helpline: (877) 908-3360.
Text: (833) 259-2277 – Your carrier’s standard messaging and data rates apply.
- Eldercare Locator.
Nationwide service that connects older Americans and their caregivers with information on senior services. Search for providers and/or resources by zip code, city or state.
Toll Free: (800) 677-1116.
- HealthinAging.org.
HealthyAging.org features educational materials for older adults and caregivers, as well as information on finding a geriatric healthcare professional.
Phone: (212) 308-1414.
Email: info@healthinaging.org.
- LeadingAge.
LeadingAge is a 5,400-member association of nonprofit providers who are committed to providing compassionate service to older adults. Advocates for universal access to high-quality programs and services.
Phone: (202) 783-2242.
Email: info@leadingage.org.
- National Aging and Disability Transportation Center (NADTC).
NADTC promotes the availability and accessibility of transportation options for older adults, people with disabilities, and caregivers. NADTC provides supports older adults, people with disabilities of all ages, and their families to help them find the best mobility options in their communities to reach their destinations of choice.
Phone: (866) 983-3222.
Email: contact@nadtc.org.
- National Center on Health, Physical Activity, and Disability (NCHPAD).
NCHPAD is a public health practice and resource center on health promotion for persons with disabilities. They provide disability specific information regarding physical activity, nutrition, and lifestyle weight management along with web-based health promotion programs accessible to users of all abilities.
Toll Free: (800) 866-8896.
Fax: (205) 975-0043.
Email: nchpad@uab.edu.
- National Council on Aging (NCA).
NCA shares the resources, tools, best practices, and advocacy that older adults, caregivers, service providers, and advocates need to ensure that every person can age with health and financial security.
Contact form.
- National Institute on Aging (NIA).
NIA leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. NIA is the primary Federal agency supporting and conducting research on Alzheimer’s disease and related dementias. NIA provides research resources and disseminates information about aging and advances in research to the public, health care professionals, and the scientific community.
Phone: (800) 222-2225.
Email: niaic@nih.gov.
Contact Form.
- The Million Hearts Initiative.
Million Hearts is a national initiative co-led by the Centers for Disease Control and Prevention and the Centers for Medicare & Medicaid Services that optimizes the possibility of preventing cardiovascular disease. Million Hearts prioritizes strategies for building healthy communities and optimizing care through a committed focus on specific populations experiencing inequities.
Email: millionhearts@cdc.gov.
- USAging.
USAging is the national association that represents and supports the network of Area Agencies on Aging and advocates for the Title VI Native American Aging Programs. Members help older adults and people with disabilities live with optimal health, wellbeing, independence and dignity in their homes and communities.
Phone: (202) 872-0888.
Fax: (202) 872-0057.
Email: info@usaging.org.
Parents with Disabilities
- Disabled Parenting Project.
The DPP is an online, interactive cross-disability parenting community for sharing experiences, advice, and conversations among disabled parents as well as those considering parenthood.
Contact Form.- The Resource Directory lists health, legal, and social service providers, as well as programs that are committed to providing competent and welcoming care for parents with disabilities, prospective parents, and their children.
- The Resource Library is a central access point for reliable and up-to-date information and resources on parenting with a disability.
- National Research Center for Parents with Disabilities.
This Center conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. The Center provides a comprehensive, accessible online hub, with training, technical assistance, and informative materials.
Phone: (781) 736-8415.
Fax: (781) 736-3773.
Email: centerforparents@brandeis.edu.
- National Resource Center for Parents with Disabilities Through the Looking Glass.
The Center provides and encourages respectful and empowering services – guided by personal disability experience and disability culture – for families that have children, parents, or grandparents with disabilities or medical issues.
Phone: (510) 848-1112.
Email: TLG@lookingglass.org.
Parents of Children with Disabilities
- Center for Parent Information & Resources.
CPIR serves as a central resource of information and products to the community of Parent Training Information Centers and the Community Parent Resource Centers, so that they can focus their efforts on serving families of children with disabilities.
Phone: (973) 642-8100. - Exceptional Parent (EP).
Magazine and website for parents of children with disabilities. EP publishes an annual resource guide that includes companies, organizations, and state and federal agencies.
- Matrix Parent Network and Resource Center.
Matrix is a parent-founded, parent-operated nonprofit organization that provides both direct services to families and technical support services to other federally-funded parent centers. Matrix empowers families of children with special needs to successfully understand and access the systems that serve them.
Toll Free Helpline: (800) 578-2595; Monday through Friday from 9 am to 5 pm ET.
Phone: (415) 884-3535.
- Parent to Parent USA (P2PUSA).
P2PUSA offers information and emotional support to parents and families of children with special health care needs, disabilities, or mental health conditions by matching individuals seeking support with an exceptional or trained Support Parent.
Contact Form.