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:
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.
Children of Aging Parents (CAPS)
1609 Woodbourne Road, Suite 302A
Levittown, PA 19057
Web site: http://www.caps4caregivers.org
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.
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: http://www.familyvoices.org
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: http://www.48friend.org
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: http://www.caregiving.org
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.
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: http://www.rci.gsw.edu
RCI provides educational programs for caregivers, conducts research, and disseminates information about caregiving.
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.
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:
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: http://www.aarp.org
AARP supplies information about caregiving, long-term care and aging, including publications and audio-visual aids for caregivers.
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: http://www.caremanager.org
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: http://www.aoa.gov
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.
Aging with Dignity
PO Box 1661
Tallahassee, FL 32302-1661
Web site: http://www.agingwithdignity.org
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: http://www.hospicefoundation.org
The National Hospice Foundation hosts an annual teleconference on issues of bereavement, and has publications on grief and bereavement.
Web site: http://www.lastacts.org
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: http://www.nhpco.org
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: http://www.compassionatefriends.org
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.
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: http://www.benefitscheckup.org
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: http://www.hrsa.gov/osp/dfcr
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: http://www.healthinsurance.com
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.
PO Box 515
Doniphan, MO 63935
Web site: http://www.themedicineprogram.com
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.
Medicare Rights Center
1460 Broadway, 11th Floor
New York, NY 10036
Web site: http://www.medicarerights.org
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: http://www.patientadvocate.org
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.
Medicare Rights Center
1460 Broadway, 11th Floor
New York, NY 10036
Web site: http://www.medicarerights.org
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.
Consumer Consortium on Assisted Living
2342 Oak Street
Falls Church, VA 22046
Web site: http://www.ccal.org
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: http://www.nccnhr.org
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: http://www.nahc.org
This organization for home healthcare agency providers allows family caregivers to use the Internet to access a list of member agencies across the country.
4144 N. Central Expressway, Suite 1000
Dallas, TX 75204
Web site: http://www.NewLifeStyles.com
New LifeStyles publishes regional directories of nursing homes, assisted living and retirement communities. Call for a free copy or visit them on the Web.
VNAA promotes community based home healthcare. Family caregivers can contact them to find their local VNA.
National Association of Hospital Hospitality Houses (NAHHH)
P.O. Box 18087
Asheville, NC 28814
Web site: http://www.nahhh.org
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: http://www.PatientTravel.org
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.
230 West Monroe Street, Suite 1800
Chicago, IL 60606
Web site: http://www.easter-seals.org
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 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.
National Council on the Aging, Inc.
409 Third Street, SW
Washington, DC 20024
Web site: http://www.family-friends.org
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: http://www.nadsa.org
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: http://www.archrespite.org/NRC.htm
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: http://www.respitelocator.org/index.htm
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.
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.
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
Web site: http://www.redcross.org
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.
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.
This list was provided by the National Health Council
Web site: http://www.nhcouncil.org
Web site: http://www.alz.org
American Autoimmune Related Diseases Association
Web site: http://www.aarda.org
American Cancer Society
Web site: http://www.cancer.org
American Diabetes Association
Toll-free patient information: 800-342-2383
Web site: http://www.diabetes.org
American Foundation for AIDS Research
Toll-free: 800-39-AMFAR (392-6327)
Web site: http://www.amfar.org
American Heart Association
Toll-free: 800-AHA-USA1 (242-8721)
Web site: http://www.americanheart.org
American Liver Foundation
Toll-free: 800-GO-LIVER (465-4837) or 888-4HEP-USA (443-7872)
Web site: http://www.liverfoundation.org
American Lung Association¨
Toll-free number to connect to local
American Lung Association offices: 800-LUNG-USA
Web site: http://www.lungusa.org
American Stroke Association
Toll-Free: 888-4-STROKE (478-7653)
Web site: http://www.strokeassociation.org
American Tinnitus Association
Web site: http://www.ata.org
Amyotrophic Lateral Sclerosis Association
Web site: http://www.alsa.org
Web site: http://www.arthritis.org
Asthma & Allergy Foundation of America
Web site: http://www.aafa.org
Cancer Research and Prevention Foundation
Toll-free: 800-227-CRFA (227-2732)
Web site: http://www.preventcancer.org
(Children and Adults with Attention-Deficit/Hyperactivity Disorder)
Web site: http://www.chadd.org
Crohn's & Colitis Foundation of America
Toll-free: 800-343-3637 (to order brochures and for general information)
Web site: http://www.ccfa.org
Web site: http://www.easter-seals.org
Toll Free: 800-332-1000
Web site: http://www.epilepsyfoundation.org
The Foundation Fighting Blindness
Web site: http://www.blindness.org
Huntington's Disease Society of America
Web site: http://www.hdsa.org
Kidney Cancer Association
Web site: http://www.kidneycancerassociation.org
The Leukemia & Lymphoma Society
Web site: http://www.leukemia-lymphoma.org
Lupus Foundation of America
Toll-free information request line: 800-558-0121
Web site: http://www.lupus.org
March of Dimes Birth Defects Foundation
March of Dimes Resource Center
Web site: http://www.modimes.org
Myasthenia Gravis Foundation of America
Web site: http://www.myasthenia.org
Web site: http://www.myositis.org
National Down Syndrome Society
Web site: http://www.ndss.org
National Hemophilia Foundation
Toll-free: 800-42-HANDI (424-2634)
Web site: http://www.hemophilia.org
National Mental Health Association
Toll Free: 800-969-NMHA (6642)
Web site: http://www.nmha.org
National Osteoporosis Foundation
Web site: http://www.nof.org
National Psoriasis Foundation
Web site: http://www.psoriasis.org
National Sleep Foundation
Web site: http://www.sleepfoundation.org
Osteogenesis Imperfecta Foundation
Toll-free: 800-981-BONE (2663)
Web site: http://www.oif.org
The Paget Foundation
Toll-free: 800-23-PAGET (237-2438)
Web site: http://www.paget.org
Sjogren's Syndrome Foundation
Web site: www.sjogrens.org
Spina Bifida Association of America
Web site: http://www.sbaa.org
Tourette Syndrome Association, Inc.
Toll-free: 888-4-TOURET (486-8738)
Web site: http://www.tsa-usa.org
Tuberous Sclerosis Alliance
Web site: http://www.tsalliance.org
United Ostomy Association
Web site: http://www.uoa.org
American Parkinson Disease Association
1250 Hylan Boulevard, Suite 4-B
Staten Island, NY 10305
Web site: www.apdaparkinson.org
United Cerebral Palsy
1660 L Street, NW, Suite 700
Washington, DC 20036
Web site: www.ucpa.org
Cystic Fibrosis Foundation
6931 Arlington Road Bethesda, MD 20814
Toll-Free: 800-FIGHT CF (344-4823)
Web site: www.cff.org
National Organization for Rare Disorders
P.O. Box 1968
Danbury, CT 06813
Web site: http://www.rarediseases.org
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.