Caregiving and Loss: Family Needs, Professional Responses
HFA's Year 2001 Initiative - read the news release
Resource List
Caregiving General Support | Caregiving Hospice & End-of-Life Care | Caregiving Specific Support - Disease Related - Elderly Referral Services - Eldercare Locator - Ethnic and Minority Services | Financial Support Services | Grief and Bereavement | Home Care, Assisted Living, & Nursing Facilities | Internet Resources | Respite Services | Referral Resources
Both Hospice Foundation of America and the National Family Caregivers Association recognize that the responsibilities and requirements of caregivers can be overwhelming. Whether your caregiving efforts guide you personally, professionally, or both, support is available.
We hope that the following list can serve as a guide to meeting some of your needs. You will find national organizations and resources that offer general support, disease-specific support, respite care, and elderly information. The Internet sites can provide you with online support and resources. In addition, there are many excellent organizations that provide assistance on a local level. A select list is included, but you may contact any of the national organizations listed for local information.
While your individual experience dictates specific needs, when you contact one or more of the organizations listed, you will find that you are not alone.
Caregiving
General Support
National
Organizations
American
Self-Help Clearinghouse
100
E. Hanover Avenue, Suite 202, Cedar Knolls, NJ 07927-2020
(973)
625-7101 Fax: (973) 326-9467
http://www.selfhelpgroups.org
email:
ashc@cybernex net
Not
caregiver specific, but serves as an information clearinghouse for various
self-help groups.
Also provides information on how to start a support group.
Family Caregiver Alliance
690
Market Street, Suite 600, San Francisco, CA 94104
(415)
434-3388 or (800) 445-8106 (CA residents only)
Fax:
(415) 434-3508
http://www.caregiver.org
email:
info@caregiver.org
FCA
is a nationally recognized information center on long-term care and the lead
agency in California's system of Caregiver Resource Centers. FCA serves as a
public voice for caregivers, illuminating the daily challenges they face,
offering them assistance and championing their cause through education,
services, research, and advocacy.
Friends
Health Connection
P.O. Box 114, New Brunswick, NJ 08903
(800) 483-7436 Fax:
(800) 384-7436
http://www.48friend.org
email:
FHC@pilot.NJIN.NET
Links
persons with illness or disability and their family caregivers with others
experiencing the same challenges.
National
Alliance for Caregiving
4720
Montgomery Lane, Suite 642, Bethesda, MD 20814
(301)
718-8444 Fax: (301) 718-0034
http://www.caregiving.org
email: gailhunt. nac@erols.com
The
National Alliance for Caregiving (NAC) is a non-profit joint venture created
to support family caregivers of the elderly and the professionals who serve
them. Recognizing that family caregivers provide important societal and
financial contributions toward maintaining the well-being of older Americans,
the Alliance was created to conduct research, develop national projects, and
increase public awareness of the issues of family caregiving.
National
Family Caregivers Association
10400
Connecticut Avenue, Suite 500, Kensington, MD 20895
(800)
896-3650 Fax: (301) 942-2302
http://www.nfcacares.org
email: info@nfcacares.org
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. Members
receive the quarterly newsletter, Take
Care!, inspirational greeting cards, and access to an experienced staff
which provides information, referrals, and caregiver support counseling.
Rosalynn Carter Institute for Caregiving-Caring for Caregivers
800 Wheatley Street, Americus, GA 31709
(912) 928-1234 Fax: (912) 931-2663
http://rci.gsw.edu
email: rci@canes.gsw.edu
The RCI provides educational programs for caregivers; conducts research on the caregiving process; disseminates information on caregiving to a wide audience; consuIts with agencies, organizations, and individuals about caregiving activities; provides a forum for a discussion of issues concerning informal and formal caregiving; and advocates for public awareness and policy changes which enhances the lives of caregivers.
Strength
for Caring-Hotline
(888)
422-7380
http://www.oncolink.upenn.edu/sfc
A
free comprehensive education and support program for family members caring for
patients with cancer at home. The program is intended to help family
caregivers feel better equipped and more confident in this role.
Well
Spouse Foundation
30
East 40th Street, New York, NY 10016
(800)
838-0879 Fax: (212) 685-8815
http://www.wellspouse.org
email:
wellspouse@aol.com
A
national, non-profit membership organization that gives support to husbands,
wives and partners of the chronically ill and/or disabled. They offer support
group information for spouses.
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Caregiving Hospice & End-of-Life Care
Hospice
Foundation of America
2001
S Street, NW, Suite 300, Washington, DC 20009
(800)
854-3402 Fax: (202) 638-5312
-or-
12000 Biscayne Blvd.
#505, Miami Beach, FL 33181
(305) 981-2522 Fax: (305) 981-3390
http://www.hospicefoundation.org
email:
dabrams@hospicefoundation.org
Hospice
Foundation of America is a non-profit organization that provides leadership in
the development and application of hospice and its philosophy of care. The
Foundation produces an annual award-winning National Bereavement
Teleconference and publishes the Living
with Grief¨ book series in conjunction with the teleconference. In
addition to the annual teleconference, HFA provides a variety of other
resources. A Guide to Recalling and
Telling Your LWe Story is a tool to assist people in writing their
autobiographies. Clergy to Clergy:
Ministering
to Those Facing Illness, Death, and Grief is
an audiotape series developed to help clergy members of all faiths minister to
their communities and see to their own needs as caregivers. HFA publishes Journeys,
a monthly newsletter for the bereaved, as well as special issues for
adolescents, the newly bereaved, and those facing the anniversary of a death.
HFA serves as the Managing Editor for Omega,
Journal of Death and Dying. HFA offers brochures on Choosing Hospice, Hospice Volunteers, and Living with Grief At Work, At School and At Worship; has published a
series of educational articles; and provides resources to hospices, schools,
military service centers, and other organizations, HFA is a member of the
Combined Federal Campaign through Health Charities of America.
National
Hospice and Palliative Care Organization
1700
Diagonal Road, Alexandria, VA 22314
(703)
837-1500 Fax: (703) 525-5762
http://www.nhpco.org
The
oldest and largest non-profit organization in the U.S. devoted exclusively to
hospice and palliative care. NHPCO operates the Hospice Helpline
(800-658-8898) to provide the general public and healthcare providers with
information about hospice and palliative care.
Project
on Death In America Open Society Institute
400
W. 59th Street, New York, NY 10019
(212)
548-0150 Fax: (212) 548-4613
http://www.soros.org/death/index.html
email:
pdia@sorosny.org
The
mission of Project on Death in America is to understand and transform the
culture and experience of dying and bereavement through initiatives in the
provision of care, public education, professional education, and public
policy.
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Caregiving
Specific Support
Disease-Related
Support
AIDS/HIV
Whitman-Walker
Clinic
1407
S Street, NW, Washington, DC 20009
(202)
797-3500
http://www.wwc.org
The
ALS Association National Office
27001
Agoura Road, Suite 150, Calabasas Hills, CA 91301-5104
(800)
782-4747 (Information and Referral)
(818)
880-9007 (All Other Calls)
http://www.alsa.org
Alzheimer's Disease & Related Disorder Association
919
N. Michigan Avenue, Suite 1100, Chicago, IL 60611-1676
(800)
272-3900 Fax: (312) 335-1110
http://www.alz.org
email: info@alz.org
American
Brain Tumor Association
2720
River Road, Suite 146, Des Plaines, IL 60018
(800)
886-2282 Fax: (847) 827-9918
http://www.abta.org
American
Cancer Society
1599
Clifton Road, NE, Atlanta, GA 30329
(404)
320-3333 Fax: (404) 325-2548
http://www.cancer.org
American
Heart Association-National Center
7272
Greenville Avenue, Dallas, TX 75231
(800)
553-6321 Fax: (214) 706-5231
http://www.americanheart.org
American
Parkinson's Disease Association
1250
Hylan Boulevard, Suite 4B, Staten Island, NY 10305
(800)
223-2732 Fax: (718) 981-4399
http://www.apdaparkinson.com
National
Alliance for the Mentally Ill
Colonial
Place Three
2107
Wilson Boulevard, Suite 300, Arlington, VA 22201
(800)
950-NAMI (6264) Fax: (703)524-9094
http://www.nami.org
National
Mental Health Self Help Clearinghouse
1211
Chestnut Street, Suite 1207, Philadelphia, PA 19107
(800)
553-4KEY (4539) Fax: (215) 636-6312
http://www.mhselfhelp.org
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AARP
601
E Street, NW, Washington, DC 20049
(800)
424-3410
http://www.aarp.org
email: member@aarp.org
Supplies
education and information about caregiving, long-term care, and aging,
including publications and audio-visual aids for caregivers.
Children
of Aging Parents
1609
Woodbourne Road, Suite 302A, Levittown, PA 19057
(800)
227-7294
http://www.careguide.net
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 caregivers.
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National
Association of Area Agencies on Aging
927
15th Street, NW, 6th Floor, Washington, DC 20005
(800)
677-1116 Fax: (202) 296-8134
http://www.n4a.org
Referrals
to Area Agencies on Aging via zip code locations. Offers information about
many eldercare issues and services in local communities.
The
National Association of Professional Geriatric Care Managers
1604
North Country Club Road, Tucson, AZ 85716
(520)
881-8008 Fax: (520)325-7925
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 you to their
state chapters, which in turn can give you the names of GCMs in your area.
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Ethnic and Minority Caregiving Resources
Coalition
of Limited English Speaking Elderly
53
West Jackson, Suite 1301, Chicago, IL 60604
(312)
461-0812
Jewish
Council for the Aging
11820
Parklawn Drive, Suite 200, Rockville, MD 20852
(301)
255-4200
National
Association for Hispanic Elderly
1015
18th Street, NW, Suite 401, Washington, DC 20036
(202)
293-9329
National
Caucus and Center on Black Aging, Inc.
1424
K Street, NW, Suite 500, Washington, DC 20005
(202)
637-8400 Fax: (202) 347-0895
http://www.ncba-blackaged.org
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Financial
Support Programs:
(Prescription
Drug & Medical Care)
Federal
Hill-Burton Free Care Program
(800)
638-0742 (message center)
Offers
referrals to agencies that offer free medical care.
Health
Care Financing Agency
Office
of the Administrator, Room 31 4G Humphrey Bldg.
200 Independence Avenue, SW,
Washington, DC 20201
Medicare
Hotline: (800) 638-6833
http://www.cms.hhs.gov/
HCFA
provides health insurance for over 74 million Americans through Medicare,
Medicaid, and the State Children's Health Insurance Program (SCHIP). In
addition to providing health insurance, HCFA also performs a number of
quality-focused activities, including regulation of laboratory testing (CLIA),
development of coverage policies, and quality-of-care improvement.
Medicine
Program
P.O.
Box 520, Doniphan, MO 63935
(573)
996-7300 Fax: (573) 996-3304
http://www.themedicineprogram.com
email: help@themedicineprogram.com
A
means-tested program 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.
National
Patient Advocates Foundation
753
Thimble Shoals, Suite B, Newport News, VA 23606
(800)
532-5274 Fax: (757) 873-8999
http://www.npaf.org
email: action@npaf.org
The
Patient Advocates Foundation is a national non-profit organization that serves
as an active liaison between patients and their insurer, employer and/or
creditors to resolve insurance, job discrimination and/or debt crisis matters
relating to patient's conditions.
Pharmaceutical
Research and Manufacturers of America
1100
15th Street, NW, Washington, DC 20005
(202)
835-3400 or (800) 762-4636 (message center)
http://www.phrma.org
Provides
a patient assistance directory that includes a list of pharmaceutical
company-run programs which help people without insurance or with low income to
obtain medications.
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Association
for Death Education and Counseling
342
N. Main Street, West Hartford, CT 06117-2507
(860)
586-7503 Fax: (860) 586-7550
http://www.adec.org
A
multi-disciplinary professional organization dedicated to promoting excellence
in death education, bereavement counseling, and care of the dying. Based on
theory and quality research, ADEC provides information, support, and resources
to its membership and the public.
Hospice
Foundation of America
2001
S Street, NW, Suite 300, Washington, DC 20009
(800)
854-3402 Fax: (202) 638-5312
-or
12000 Biscayne Blvd.
#505, Miami Beach, FL 33181
(305) 981-2522 Fax: (305) 981-3390
http://www.hospicefoundation.org
email: dabrams@hospicefoundation.org
The Compassionate Friends
P.O.
Box 3696, Oak Brook, IL 60522-3696
(630)
990-0010
Fax:
(630) 990-0246
http://www.compassionatefriends.org
The
Compassionate Friends is a self-help organization whose purpose is to offer
friendship and understanding to families following the death of a child. They
have 580 chapters nationwide that provide monthly meetings, phone contacts,
lending libraries, and grief-related literature. Also provides training
programs and resources for local chapters and answers referral requests.
Widowed
Persons Service
4270
Chicago Drive, SW, Grandville, MI 49418
(616)
538-0101
WPS
is a self-help support group for men and women who have experienced the loss
of a spouse through death. They offer daytime and evening support group
meetings, seminars, social activities and public education of the widowed
experience. They have a directory of the 270 programs across the country as
well as videos.
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Home Care, Assisted Living, & Nursing Facilities
Consumer
Consortium on Assisted Living
P.O.
Box 3375, Arlington, VA 22203
(703)
841-2333 Fax: (703) 243-3342
http://www.ccal.org
email: membership@ccal.org
CCAL
is a national consumer-focused organization dedicated to representing the
needs of residents in assisted living facilities and educating consumers,
professionals, and the general public about assisted living issues. Also
provides tools to help consumers to make informed choices including a
checklist for evaluating assisted living facilities.
National
Association for Home Care
228
7th Street, SE, Washington, DC 20003
(202)
547-7424 Fax: (202) 547-3540
http://www.nahc.org
NAHC
is a trade association that represents the interests of home care agencies,
hospices, and home care aide organizations.
National
Citizens Coalition for Nursing Home Reform
1424
16th Street, NW, Suite 202, Washington, DC 20036
(202)
332-2275 Fax: (202) 332-2949
http://www.nccnhr.org
email: nccnhr@nccnhr.org
Serves
as an information clearinghouse and offers nationwide referrals for help with
concerns regarding long-term care facilities.
New
Lifestyles
(800)
869-9549 Fax: (214) 515-9202
http://www.NewLifeStyles.com
Publishes
free regional directories of nursing homes, assisted living and retirement
communities.
Senior
Alternatives
26211
Central Park Aye, Suite 512, South Field, MI 48076
(800)
350-0770
http://www.senioralternatives.com
Publishes
regional directories of nursing homes, assisted living and retirement
communities.
Visiting
Nurses Association of America
11
Beacon Street, Suite 910, Boston, MA 02108
(617)
523-4042
http://www.vnaa.org
email: vnaa@vnaa.org
Promotes
community-based home health care.
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There are a variety of websites that offer information and support for family caregivers. This is a general listing and many of these sites offer access to local resources. To locate other sites, type "FAMILY CAREGIVER, CAREGIVING, CAREGIVER" on any major search engine.
http://www.caregiver.com
Internet
home for Today's Caregiver Magazine.
Site includes topic specific newsletters, online discussion lists, back issue
articles, chat.
http://www.care-givers.com
Offers articles that provide
emotional and spiritual support and encouragement, as well as tools such as
chats, journal exercises, and a free newsletter.
http://www.caregiverzone.com
Offers
referrals for senior housing, home health care and support, senior centers,
medical professionals, emotional and financial counseling, additional
resources, and caregiving tips.
http://www.careguide.com
Careguide
is a care management company dedicated to helping people at every stage of the
aging process lead more comfortable, secure and independent lives.
http://www.carescout.com
CareScout
is a company dedicated to helping Americans make intelligent, informed
eldercare decsions by connecting Americans to eldercare information, ratings,
comparative data and products.
http://www.ec-online.net
(eldercare online)
An
online community of peer and professional support for people caring for aged
loved ones.
http://www.extendedcare.com
Offers
Internet-based solutions and resources that connect hospitals, consumers and
extended care providers (i.e. nursing, assisted living and other senior living
fhcilities, home health care agencies, etc.) to each other.
http://www.familycareamerica.com
Offers
varied resources to meet caregivers' specific needs in their own localities,
provides caregiver support, solution sharing, and discussion forums.
http://www.growthhouse.org
Growth
House, Inc. improves the quality of compassionate care for people who are
dying, through public education about hospice and home care, palliative care,
pain management, death with dignity, bereavement and related issues.
http://www.webofcare.com
Offers
advice on disease-specific care situations, caregiver chats, product
information, health news, and local resource searches.
http://www.widownet.org
WidowNet
is an information and self-help resource for, and by, widows and widowers.
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Respite
Services
National
Organizations
Easter
Seals
230
West Monroe Street, Suite 1800, Chicago, IL 60606
(800)
221-6827
http://www.easter-seals.org
email: info@easter-seals.org
Provides
a variety of services nationwide for children and adults with disabilities. May
include adult day care, in-home care, camps for special needs children and more.
Family
Friends
National
Council on the Aging, Inc.,
409
3rd Street, SW, Washington, DC 20024
(202)
479-6675 or (202) 479-6672
http://www.ncoa.org/content.cfm?sectionID=26
email: miriam.charnow@ncoa.org
A
project that provides respite for families of children with special needs by men
and women volunteers over the age of 50. Programs located throughout the
country, with over 2000 volunteers, flhmilies, and friends.
Shepherd's
Centers of America
One
West Armour Street, Suite 201, Kansas City, MO 64111 (800) 547-7073
http://www.shepherdcenters.org
email: staff@shepherdcenters.org
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.
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National
Association of Adult Day Services
National
Council on the Aging,
2519 Connecticut Ave, NW
Washington, DC 20008
(800) 558-5301
fax: (202) 783-2255
http://www.nadsa.org/
email: info@nadsa.org
Promotes
the concept of adult day services; provides information on many aspects of of
adult day services; works to improve and extend adult day service programs;
develops social and public policy positions related to the needs of adult day
service programs.
National
Respite Coalition
4016 Oxford Street, Annandale, VA 22003 (703) 256-9578
National
Respite Coalition works to preserve and promote respite programs and policy at
the national, state, and local levels, by providing caregivers the needed
resources for locating respite services.
National
Respite Locator Service
800
Eastowne Drive, Suite 105, Chapel Hill, NC 27514
(800)
773-5433
http://www.respitelocator.org/index.htm
Helps
parents, caregivers, and professionals find respite services in their state and
local area.
This list was compiled by the National Family Caregivers Association, with additional information from Hospice Foundation of America and the Family Caregiver Alliance.
