Caregiving Resources

Caregiving Resources

The National Family Caregivers Association (NFCA) receives hundreds of phone calls and emails a week from family caregivers seeking resources, referrals and advice. The following list includes much of the same information we provide to caregivers over the phone. In this section you will find resources for:

  • Organization for Those with Rare Disorders

    A Good Place to Start

    It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs such office on disabilities, elder affairs, or material and child health.

    Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

    Caregiver Organizations, Information, Advocacy and Support Resources

    Children of Aging Parents (CAPS)
    1609 Woodbourne Road, Suite 302A
    Levittown, PA 19057
    Web site:

    CAPS assists caregivers of the elderly with information and referrals, a network of support groups, and publications and programs that promote public awareness of the value and the needs of family caregivers.

    Family Caregiver Alliance (FCA)
    690 Market Street, Suite 600
    San Francisco, CA 94104
    Web site:

    FCA is the lead agency in California's system of Caregiver Resource Centers. FCA provides support and help to family caregivers and champions their cause through education, services, research and advocacy. Services are specific to California, although information can be accessed nationally.

    Family Voices, Inc.
    3411 Candelaria NE, Suite M
    Albuquerque, NM 87107
    Web site:

    Family Voices offers information on healthcare policies relevant to special needs children in every state.

    Friends' Health Connection
    PO Box 114
    New Brunswick, NJ 08903
    Web site:

    Friends' Health Connection links persons with illness or disability and their family caregivers with others experiencing the same challenges.

    National Alliance for Caregiving
    4720 Montgomery Lane, 5th Floor
    Bethesda, MD 20814
    Web site:

    Although not an organization that helps family caregivers directly, The National Alliance for Caregiving's Web site helps family caregivers learn about information, videos, pamphlets, etc. that have been reviewed and approved as providing solid information.

    National Family Caregivers Association
    10400 Connecticut Avenue, Suite 500
    Kensington, MD 20895
    Web site:

    The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

    Rosalynn Carter Institute for Human Development (RCI)
    800 Wheatley Street
    Americus, GA 31709
    Web site:

    RCI provides educational programs for caregivers, conducts research, and disseminates information about caregiving.

    Well Spouse Foundation
    63 West Main Street, Suite H
    Freehold, NJ 07728
    Web site:

    Well Spouse is a national membership organization that gives support to husbands, wives and partners of the chronically ill and/or disabled. Well Spouse has a network of support groups and also a newsletter for spouses.


    Caregiver-Specific Web Sites

    There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations. Because Web sites come and go, especially commercial ones, this list contains only those sites that have been around for a substantial period of time. To find other sites, the caregiver need only type "caregiver," "caregivers," or "family caregiving" into a search engine. Many site addresses will be displayed.

    Some good Web sites to check out include:



    Caring for Elders

    As a general recommendation, advise the caregiver to contact the county office of senior services or elder affairs, area adult day centers, and/or local social service agencies, all of which provide services to the elderly. These numbers can be located in the blue pages of the phone book or by typing the name of the county and state you are in into a search engine on the Web.

    601 E Street, NW
    Washington, DC 20049
    Web site:

    AARP supplies information about caregiving, long-term care and aging, including publications and audio-visual aids for caregivers.

    Eldercare Locator
    National Association of Area Agencies on Aging
    927 15th Street, NW, 6th floor
    Washington, DC 20005
    Web site: or

    The Eldercare Locator provides referrals to Area Agencies on Aging via zip code locations. Family caregivers can also find information about many eldercare issues and services available in local communities.

    The National Association of Professional Geriatric Care Managers
    1604 North Country Club Road
    Tucson, AZ 85716
    Web site:

    Geriatric care managers (GCMs) are health care professionals, most often social workers, who help families in dealing with the problems and challenges associated with caring for the elderly. This national organization will refer family caregivers to their state chapters, which in turn can provide the names of GCMs in your area. This information is also available online.

    U.S. Administration on Aging
    Department of Health and Human Services
    Washington, DC 20201
    Web site:

    The Administration on Aging is the official federal agency dedicated to the delivery of supportive home and community-based services to older individuals and their caregivers. The AoA Web site has a special section on family caregiving.


    End-of-Life Planning, Hospice, and Bereavement Information

    Aging with Dignity
    PO Box 1661
    Tallahassee, FL 32302-1661
    888-5-WISHES (594-7437)
    Web site:

    Aging with Dignity publishes the Five Wishes Living Will document, a very user-friendly and comprehensive document that meets legal requirements in 35 states.

    Hospice Foundation of America
    2001 S Street, NW, Suite 300
    Washington, DC 20009
    Web site:

    The National Hospice Foundation hosts an annual teleconference on issues of bereavement, and has publications on grief and bereavement.

    Last Acts
    Web site:

    Last Acts is a major public education initiative of the Robert Wood Johnson Foundation focused on improving end-of-life care for Americans by impacting medical and public education, legislation and more. The Web site is very comprehensive.

    National Hospice and Palliative Care Organization
    1700 Diagonal Road, Suite 625
    Alexandria, VA 22314
    Web site:

    NHPCO operates a hospice help line to provide the general public and healthcare providers with information.

    The Compassionate Friends
    P.O. Box 3696
    Oak Brook, IL 60522
    Web site:

    This group offers telephone support and understanding to families who have lost a child. They maintain a resource library and have a national chapter network and newsletter.


    Financial Help for Health Insurance and Prescription Drugs

    Family caregivers can contact their county or state Department of Health and Human Services, or area social service agencies such as Catholic Charities or the Association of Jewish Family and Children's Agencies, as well as local chapters of voluntary health agencies to find out if they offer any financial support programs and how to apply for them.

    Benefits Check-Up and Benefits Check-Up RX
    Web sites:

    A service of the National Council on the Aging, Benefits Check-Up and Benefits Check-UP RX help people over the age of 55 find federal, state, and local public and private programs that may pay for some of their medical care and/or prescription costs.

    Hill-Burton Free Medical Care Program
    Web site:

    Hospitals and other health care facilities that receive federal funds for construction or modernization under this program must provide a specific amount of free or below-cost health care services to eligible people. The program will provide a list of participating facilities as well as information on eligibility.
    Web site:

    This fairly new Web site provides consumers and small businesses with quotes for health insurance, and may help those who have lost their health insurance find an affordable alternative.

    Medicine Program
    PO Box 515
    Doniphan, MO 63935
    Web site:

    This program is for persons who do not have coverage either through insurance or government subsidies for outpatient prescription drugs, and who cannot afford to purchase medications at retail prices.


    Advocacy Assistance

    Medicare Rights Center
    1460 Broadway, 11th Floor
    New York, NY 10036
    Web site:

    The Center helps consumers with their Medicare problems plus provides hotlines for direct services, education/training, policy briefs, and a list of discount drug programs. The Web site also has a list of phone numbers for each state's "State Health Insurance Assistance Program."

    Patient Advocate Foundation
    700 Thimble Shoals Boulevard, Suite 200
    Newport News, VA 23606
    Web site:

    The Patient Advocate Foundation serves as a liaison between patients and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relating to a patient's condition.


    Health Insurance: Prescription Assistance Information

    Medicare Rights Center
    1460 Broadway, 11th Floor
    New York, NY 10036
    Web site:

    Medicare Rights Center, founded in 1989, is the nation's largest independent source of health care information and assistance for older and disabled Americans, their caregivers and the professionals who serve them. Medicare Interactive (MI) is the one-stop source for information about health care rights, options and benefits and it is designed to help people find answers to all their questions - from the most basic to the most complex - for people with Medicare.


    Homecare Agencies, Assisted Living and Nursing Homes

    Consumer Consortium on Assisted Living
    2342 Oak Street
    Falls Church, VA 22046
    Web site:

    CCAL is a national consumer-focused organization that is dedicated to representing the needs of residents in assisted living facilities and educating consumers, professionals, and the general public about assisted living issues. Family caregivers can request the publication "Choosing an Assisted Living Facility: Strategies for Making the Right Decision," which provides helpful information and a concise checklist for those contemplating this next step.

    National Citizens' Coalition for Nursing Home Reform
    1424 16th Street, NW, Suite 202
    Washington, DC 20036
    Web site:

    This organization serves as an information clearinghouse and offers referrals nationwide for help with concerns about long-term care facilities.

    National Association for Home Care and Hospice
    228 7th Street, SE
    Washington, DC 20003
    Web site:

    This organization for home healthcare agency providers allows family caregivers to use the Internet to access a list of member agencies across the country.

    New LifeStyles
    4144 N. Central Expressway, Suite 1000
    Dallas, TX 75204
    Web site:

    New LifeStyles publishes regional directories of nursing homes, assisted living and retirement communities. Call for a free copy or visit them on the Web.

    Visiting Nurse Associations of America
    Web site:

    VNAA promotes community based home healthcare. Family caregivers can contact them to find their local VNA.


    Medical Transport and Hospitality Housing

    National Association of Hospital Hospitality Houses (NAHHH)
    P.O. Box 18087
    Asheville, NC 28814
    Web site:

    NAHHH represents organizations that provide lodging (and service) for families receiving medical care away from home; furnishes information about hospitality homes in the caller's area; offers newsletter; and publishes an annual directory of facilities offering lodging.

    National Patient Travel Center
    Mercy Medical Airlift
    4620 Haygood Road, Suite 1
    Virginia Beach, VA 23455
    Web site:

    Family caregivers can receive help in locating air transportation for needy patients who need distant specialized medical evaluation, diagnosis or treatment. The National Patient Travel Helpline is available 24/7 and provides referrals to all major medical transport providers in the network.


    Respite Resources

    Easter Seals
    230 West Monroe Street, Suite 1800
    Chicago, IL 60606
    Web site:

    Easter Seals provides a variety of services at 400 sites nationwide for children and adults with disabilities, including adult day care, in-home care, camps for special needs children and more. Services vary by site.

    Faith in Action
    Wake Forest University School of Medicine
    Medical Center Boulevard
    Winston-Salem, NC 27157
    Web site:

    Faith in Action is an interfaith volunteer caregiving program of The Robert Wood Johnson Foundation. Faith in Action makes grants to local groups representing many faiths who volunteer to work together to care for their neighbors who have long-term health needs. There are nearly 1,000 interfaith volunteer caregiving programs across the country.

    Family Friends
    National Council on the Aging, Inc.
    409 Third Street, SW
    Washington, DC 20024
    Web site:

    This group provides respite (and other services) by matching men and women volunteers over the age of 50 with families of children who have disabilities or chronic illness. Programs are located throughout the country.

    National Adult Day Services Association, Inc.
    8201 Greensboro Drive, Suite 300
    McLean, VA 22102
    Web site:

    This association provides information about locating adult day care centers in your local area.

    National Respite Coalition
    4016 Oxford Street
    Annandale, VA 22003
    Web site:

    NRC provides a list of states that have respite coalitions. These state coalitions then list respite services available in their state. The majority of the information is focused on helping families of children with special needs, but lately there has been an effort to enlarge their referral base to include lifespan respite information. The NRC is working to gain passage of national lifespan respite legislation.

    National Respite Locator Service
    800 Eastowne Drive, Suite 105
    Chapel Hill, NC 27514
    800-473-1727, ext. 222
    Web site:

    Access a list of sites nationwide. While the vast majority focus on respite care for families of special needs children, the service now assists programs that provide respite for caregivers of adults and the elderly.

    Shepherd's Centers of America
    One West Armour Boulevard, Suite 201
    Kansas City, MO 64111
    Web site:

    The organization provides respite care, telephone visitors, in-home visitors, nursing home visitors, home health aides, support groups, adult day care, and information and referrals for accessing other services available in the community. Services vary by center.


    Training for Family Caregivers

    It is always a good idea to check with the Voluntary Health Agency (see below) that deals with your loved one's condition to find out if they offer training classes. Other potential community-based resources might be your local hospital; home care agencies; Area Agency on Aging, County and State departments of health.

    American Red Cross
    2025 E Street, NW
    Washington, DC 20006
    202- 303-4498
    Web site:

    The Red Cross has developed training programs for family caregivers. You will need to check with your local chapter to find out if there are classes in your area.

    National Family Caregivers Association
    10400 Connecticut Avenue
    Kensington, MD 20895
    Web site:

    NFCA has developed an educational workshop to teach family caregivers to communicate more effectively with healthcare professionals. Check out the NFCA Web site to find out if there are workshops scheduled in your community.


    Voluntary Health Agencies

    This list was provided by the National Health Council
    Web site:

    Alzheimer's Association
    Toll-free: 800-272-3900
    Web site:

    American Autoimmune Related Diseases Association
    Toll-free: 800-598-4668
    Web site:

    American Cancer Society
    Toll-free: 800-ACS-2345
    Web site:

    American Diabetes Association
    Toll-free patient information: 800-342-2383
    Web site:

    American Foundation for AIDS Research
    Toll-free: 800-39-AMFAR (392-6327)
    Web site:

    American Heart Association
    Toll-free: 800-AHA-USA1 (242-8721)
    Web site:

    American Kidney Fund
    Toll-free Help Line: 800-638-8299
    Web site: or

    American Liver Foundation
    Toll-free: 800-GO-LIVER (465-4837) or 888-4HEP-USA (443-7872)
    Web site:

    American Lung Association¨
    Toll-free number to connect to local
    American Lung Association offices: 800-LUNG-USA
    Web site:

    American Stroke Association
    Toll-Free: 888-4-STROKE (478-7653)
    Web site:

    American Tinnitus Association
    Toll-free: 800-634-8978
    Web site:

    Amyotrophic Lateral Sclerosis Association
    Toll-free: 800-782-4747
    Web site:

    Arthritis Foundation
    Toll-free 800-283-7800
    Web site:

    Asthma & Allergy Foundation of America
    Toll-free: 800-7-ASTHMA
    Web site:

    Cancer Research and Prevention Foundation
    Toll-free: 800-227-CRFA (227-2732)
    Web site:

    (Children and Adults with Attention-Deficit/Hyperactivity Disorder)
    Toll-free: 800-233-4050
    Web site:

    Crohn's & Colitis Foundation of America
    Toll-free: 800-343-3637 (to order brochures and for general information)
    Web site:

    Easter Seals
    Toll-free: 800-221-6827
    Web site:

    Epilepsy Foundation
    Toll Free: 800-332-1000
    Web site:

    The Foundation Fighting Blindness
    Toll-free: 888-394-3937
    Web site:

    Huntington's Disease Society of America
    Toll-free: 800-345-HDSA
    Web site:

    Kidney Cancer Association
    Toll-free: 800-850-9132
    Web site:

    The Leukemia & Lymphoma Society
    Toll-free: 800-955-4572
    Web site:

    Lupus Foundation of America
    Toll-free information request line: 800-558-0121
    Web site:

    March of Dimes Birth Defects Foundation
    March of Dimes Resource Center
    Toll-free: 888-663-4637
    Web site:

    Myasthenia Gravis Foundation of America
    Toll-free: 800-541-5454
    Web site:

    Myositis Association
    Toll-free: 800-821-7356
    Web site:

    National Down Syndrome Society
    Toll-free: 800-221-4602
    Web site:

    National Hemophilia Foundation
    Toll-free: 800-42-HANDI (424-2634)
    Web site:

    National Mental Health Association
    Toll Free: 800-969-NMHA (6642)
    Web site:

    National Multiple Sclerosis Society
    Toll-free: 800-FIGHT-MS (344-4867)
    Web site: or

    National Osteoporosis Foundation
    Web site:

    National Psoriasis Foundation
    Toll-free: 800-723-9166
    Web site:

    National Sleep Foundation
    Web site:

    Osteogenesis Imperfecta Foundation
    Toll-free: 800-981-BONE (2663)
    Web site:

    The Paget Foundation
    Toll-free: 800-23-PAGET (237-2438)
    Web site:

    Sjogren's Syndrome Foundation
    Toll-Free: 800-475-6473
    Web site:

    Spina Bifida Association of America
    Toll-free: 800-621-3141
    Web site:

    Tourette Syndrome Association, Inc.
    Toll-free: 888-4-TOURET (486-8738)
    Web site:

    Tuberous Sclerosis Alliance
    Toll-free: 800-225-6872
    Web site:

    United Ostomy Association
    Toll-free: 800-826-0826
    Web site:


    Additional Volunteer Health Agencies

    American Parkinson Disease Association
    1250 Hylan Boulevard, Suite 4-B
    Staten Island, NY 10305
    Toll-Free: 800-223-2732
    Web site:

    United Cerebral Palsy
    1660 L Street, NW, Suite 700
    Washington, DC 20036
    Toll-Free: 800-872-5827
    Web site:

    Cystic Fibrosis Foundation
    6931 Arlington Road Bethesda, MD 20814
    Toll-Free: 800-FIGHT CF (344-4823)
    Web site:


    Organization for Those with Rare Disorders

    National Organization for Rare Disorders
    P.O. Box 1968
    Danbury, CT 06813
    Toll-Free: 800-999-6673
    Web site:

    This organization serves as an information clearinghouse on rare diseases and orphan drugs; provides referrals to resources that offer support and assistance to people with rare disorders and their families.

  • Source: National Family Caregivers Association (NFCA)