Finding Resources in Your Local Area
Don't forget to find out what services and organizations are available in your local community. Even if
you think you will not qualify for specific services, agencies may be able to make referrals to other
organizations which may be of assistance.
- Check the county government listings in your local phone book for information on agencies
- Health and Human Services Department
- Social Service Department
- Public Health Department
- Social Security Administration
- Medical Board
- Mental Health Department
- Access governmental agencies and organizations online.
- Contact the social service department of your local hospital or clinic.
- Locate adult daycare centers and faith-based agencies.
- Locate the local chapter of disease groups (i.e. American Heart Association etc)
Caregiver Organizations, Information, Advocacy and Support Resources
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 offers information on healthcare policies relevant to special needs children in every state.
Friends' Health Connection links persons with illness or disability and their family caregivers with others experiencing the same challenges.
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.
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.
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.
Caregiver-Specific Web Sites
There are a variety of websites which offer information and support for family caregivers. Websites with
key information and support for family caregivers include:
AGIS.com provides education, support, expert advice, local resources and a vibrant community for caregivers and families of the elderly.
CareCentral is a personalized web service that allows users to create a private, secure online community for loved ones during
significant health events. It is a free tool to update friends and family, organize and schedule offers to help, and encourage
messages of hope, providing support when it is most needed.
CareConnection.com is web site devoted to family caregivers, with up-to-date health news, elder care specialists, experts,
insurance help, and coping advice. The site, owned by HealthCentral.com, offers in-depth resources from trusted sources,
interactive tools, and connections to leading experts and caregivers who share their experiences and inspiration.
Caregiver.com produces Today's Caregiver magazine, the first national magazine dedicated to caregivers,
the "Sharing Wisdom Caregivers Conferences", and web site which includes topic specific newsletters and
online discussion lists.
CAREgivinghelp.org is free, interactive website featuring short video and text educational modules on a variety of caregiving
topics, frequently asked questions that cover the different phases of caregiving, an online community monitored by a geriatric
care specialist, exercises to help caregivers "take a moment" for themselves, and a comprehensive listing of resources.
CarePages are free, private web pages that make it easy to reach out and receive messages of support and
to stay connected to family, friends, co-workers and others who care about you and your loved one. The
service is available to anyone caring for a loved one, but may be particularly helpful to those who have
recently found themselves in a care giving role.
FCA is a public voice for caregivers, illuminating the daily challenges they face, offering them the
assistance they so desperately need and deserve, and championing their cause through education, services,
research and advocacy.
The Healing Project is dedicated to providing support, education, resources, and help to those who face life-threatening and life-altering diseases and encourages those who have a personal story to share can submit an essay that will provide insight, hope, courage, and healing to those who may be newly diagnosed or living with the disease.
Lotsa Helping Hands is a volunteer coordination service for friends, family, colleagues, and neighbors to
assist loved ones in need. It's an easy-to-use, private group calendar, specifically designed for
organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for
life to run smoothly during a crisis.
The National Family Caregivers Association (NFCA) is America's premier organization for family caregivers reaching across the
boundaries of diagnoses, age, and relationship to address the common needs and concerns of all family caregivers. Through
education, support and advocacy NFCA empowers family caregivers to act on behalf of themselves and their loved ones, and works
to remove the barriers that stand in the way of a family caregiver's health and well being.
New Health Partnerships (NHP), a program of the Institute for Healthcare Improvement, is spreading collaborative self-management support, a system of care that promotes patient/family caregiver/provider partnerships to transform care for the chronically ill. The site offers valuable tools and resources that can be easily downloaded by patients, family caregivers, and their health care team
Share the Care is a grassroots organization dedicated to preventing "caregiver burnout by promoting and educating people about the benefits of group caregiving using the SHARE THE CARE™ model."
Strength for Caring is an online resource and community for family caregivers that helps family
caregivers take care of their loved ones and themselves. Strength for Caring is part of The Caregiver
Initiative, created by Johnson & Johnson Consumer Products Company, Division of Johnson & Johnson
Consumer Companies, Inc.
Caring for Elders
Vital information and possible support services for the elderly can be obtained by contacting your local
county office of senior services or elder affairs as well as your local social service department. Area
adult daycare centers may also provide information on resources for the elderly in your area. These
numbers can be located in the governmental pages of the phone book or through a web query.
AARP supplies information about caregiving, long-term care and aging, including publications and
audio-visual aids for caregivers.
AGIS.com provides education, support, expert advice, local resources and a vibrant community for caregivers and families of the elderly.
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.
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.
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 publishes the Five Wishes Living Will document, a very user-friendly and comprehensive
document that meets legal requirements in 35 states.
Caring Connections provides free brochures on end-of-life topics including advance care planning, caregiving, hospice and palliative care, pain, grief and loss and financial issues. Caring Connections also provides Advanced Directives for all states.
Online consumer database that lists hospices in North America and the U.S. All hospices are listed at no cost. It is a free service that assists families and individuals in locating a hospice within their community quickly. Also provides reliable information about hospice and end-of-life care to consumers.
The National Hospice Foundation hosts an annual teleconference on issues of bereavement, and has
publications on grief and bereavement.
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.
Health Insurance: Prescription Assistance Information
Family caregivers can contact their county or state Department of Health and Human Services for financial
programs which may provide assistance for acquiring health insurance and prescription medications. Other
possible financial resources may include social service agencies such as Catholic Charities, the
Association of Jewish Families, and Children's Agencies. Local chapters of voluntary health agencies may
also offer financial support programs and/or information on how to apply for such programs.
AGIS.com provides education, support, expert advice, local resources and a vibrant community for caregivers and families of the elderly.
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.
This website provides consumers and small businesses with quotes for health insurance and may help those
who have lost their health insurance find an affordable alternative.
This is the official web site for the Centers for Medicare and Medicaid Services (CMS), the agency
responsible for Medicare Rx. The toll-free number is 800/MEDICARE.
This is an 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 Medicare questions. The website also has a list of phone numbers
for each state's "State Health Insurance Assistance Program."
Designed to help users make decisions about the new Medicare prescription drug plan, this site has three
specific portals: one for family caregivers, one for people with Medicare, and one for professionals.
The Web site provides an overview, easy-to-understand steps, and information to assist users in making
personal decisions about Medicare prescription drug coverage.
This program is for persons who do not have coverage either through insurance or government subsidies
for outpatient prescription drugs and for those who cannot afford to purchase medications at retail
prices.
RxCompare™ is a free tool developed by Medicare Access for Patients-Rx (MAPRx) to help users determine
if they need to enroll in a Medicare drug plan and, if they do, to systematically compare the drug plans
where they live and select the best option for their prescription needs. RxCompareTM works in tandem
with Medicare's on-line "Prescription Drug Plan Finder" and with information available from plans or
1-800-MEDICARE.
Patient Advocacy Assistance and Programs
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.
Homecare Agencies
This organization for home healthcare agency providers allows family caregivers to use the Internet to
access a list of member agencies across the country.
VNAA promotes community based home healthcare. Family caregivers can contact them to find their local VNA.
Assisted Living, Nursing Home, and Residential Care
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.
This organization serves as an information clearinghouse and offers referrals nationwide for help with
concerns about long-term care facilities.
NFCA Senior Housing Locator powered by SNAPforSeniors™ is a current, comprehensive and objective resource of all licensed senior housing in the U.S., including assisted living, residential care, nursing care and rehabilitation communities as well as Continuing Care Retirement Communities (CCRC) and a growing number of independent living retirement communities.
Medical Transport and Hospitality Housing
- National Association of Hospital Hospitality Houses (NAHHH)
800-542-9730
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.
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 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.
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.
This association provides information about locating adult day care centers in your local area.
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.
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.
Training for Family Caregivers
Community-based resources may offer training and classes for family caregivers. Such resources may
include: your local hospital; home care agencies; Area Agency on Aging, voluntary health agencies,
and county and state departments of health.
American 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.
Disease Specific and Health Related Agencies and Web Sites
This list was provided by the National Health Council
Web site: http://www.nhcouncil.org
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