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ALS Support Groups and Assistance
ALS is a disease that changes the lives of patients and their family members. Families
confronted with a diagnosis of ALS may experience anxiety, confusion, and stress.
The following patient advocate organizations and social service agencies can suggest
ways to cope with the physical and emotional challenges of ALS and provide information,
assistance, and emotional support to patients, families, and caregivers. Travel
information for people with ALS is also included. Click on the following links for
more information:
Caregiver/Family
The National Caregivers Association offers support and education for the 20 to 30
million people throughout the United States who provide care for a loved one. The
association does not specialize in nervous system disorders, but provides caregiver
support for a variety of conditions, including ALS. It recently conducted a member
survey to determine the top concerns of caregivers, distributing information to
members in the form of reports and through its newsletter. In addition, a peer-to-peer
networking program helps families dealing with the same disease or with similar
circumstances, establish contact with each other. In this way, families can share
experiences and exchange valuable information.
National Family Caregivers Association (NFCA)
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Phone: (800) 896-3650 or 301-942-6430
Fax: 301-942-2302
http://www.nfcacares.org
The National Alliance for Caregiving (NAC) is a nonprofit group of national organizations,
giving support to family caregivers and the healthcare professionals who help them
and increasing public awareness of issues facing family caregivers. NAC strives
to be the objective national resource on family caregiving with the goal of improving
the quality of life for families and care recipients. NAC members include grassroots
organizations, professional associations, service organizations, disease-specific
organizations, a government agency, and corporations.
National Alliance for Caregiving(NAC)
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
www.caregiving.org
The Well Spouse Foundation was founded in 1988 with 10 members. It now has more
than 2,600 members and 70 support groups that offer support to partners of terminally
ill, chronically ill, or disabled persons. Some members are caring for spouses with
ALS. Regional support groups, patient networking opportunities, and a newsletter
help members cope with the difficulties they face as caregivers. Support groups
usually meet twice a month, either morning or evening, to share experiences, discuss
coping skills, and provide emotional support. An annual conference provides workshops
on topics such as dealing with children's feelings, the ethics of refusing life
support, legal issues, and other topics of interest to members.
Well Spouse Association (WSA)
63 West Main Street, Suite H
Freehold, NJ 07728
Phone: (800) 838-0879 or (732) 577-8899
Fax: (732) 577-8644
http://www.wellspouse.org
The National Respite Locator Service is a national directory of respite services
that helps caregivers find a respite program in their area. Respite care programs
provide complete patient care, either in a hospital or home setting, and are designed
to give family members a break from caregiving duties. Although some respite programs
specialize in certain diseases and types of care, many have the expertise to provide
care for all ALS patients. The National Respite Locator Service is run by Access
to Respite Care and Help (ARCH), an organization that oversees a nationwide network
of respite programs. The ARCH network is funded by the US Department of Health and
Human Services, Administration on Children, Youth and Families, and Children's Bureau.
ARCH can be reached at (919) 490-5577.
Chapel HIll Training-Outreach Project, Inc
800 Eastowne Drive Suite 105
Chapel Hill, NC 27514
Phone: (919) 490-5577
Fax: (919)490-4905
http://www.archrespite.org
A valuable resource for family members of ALS patients, the Family Caregiver Alliance
specializes in nervous system disorders, including ALS. In addition to maintaining
a network of resource centers, this organization sponsors education and training
workshops, respite programs, support groups, and conferences. It also conducts consultations
on the telephone and offers information and referrals.
Family Caregiver Alliance (FCA)
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
Phone: (415) 434-3388; (800) 445-8106 (in California)
http://www.caregiver.org
Home Care/Hospice
Some ALS patients wish to use hospice programs and/or home care services. Hospice
is a specialized system of care for terminally ill patients in the final stages
of their disease. It emphasizes the management of pain and other symptoms, while
providing care for the family as well. Care is provided by a team of physicians,
nurses, social workers or therapists, and/or home health aides. Hospice care is
usually provided in the patient’s home. Home care refers to the delivery of medical
and community services to an individual's home. Home care can meet many needs, from
help with household chores and personal care (dressing, feeding, bathing) to nursing
care, respiratory therapy, and physical, occupational, or speech therapy. Many home
care agencies and hospice programs are available throughout the country. They vary
in the services they provide and in their sponsorship. Before choosing a home care/hospice
program, consult state agencies or local advocacy groups. Ask for references from
hospitals, physicians, state, and community agencies. Check to see if the program
is licensed or certified by the state for payment by Medicare or Medicaid. Check
private health insurance policies to determine home care/hospice coverage. Ask the
provider for a written statement describing services, eligibility requirements,
fees, and funding sources.
NAHC is the largest and most respected professional association representing the
interests of Americans who need home care (including acute, long-term, and terminal
care) and the caregivers that provide them with in-home health and supportive services.
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. Simply put, NAHC is the one organization dedicated to making home care
and hospice providers lives easier.
NAHC develops and promotes high standards of patient care in home care services.
Individuals seeking approved home care agencies in their area may call NAHC for
assistance and referral.
National Association for Home Care & Hospice (NAHC)
228 7th Street, SE
Washington, DC 20003
Tel: (202) 547-7424
Fax: (202) 547-3540
http://www.nahc.org
The goal of the National Hospice and Palliative Care Organization (NHPCO) is to
lead and mobilize social change for improved care at the end of life.
The NHO offers information and referral to hospice programs in the United States
through a toll-free hospice help-line. Hospice services differ from program to program,
so it is important to make sure that the agency you choose provides the services
you need.
The National Hospice and Palliative Care Organization (NHPC
1700 Diagonal Road, Suite 625
Alexandria, Virginia 22314
Phone: (703) 837-1500
Toll Free HelpLine: (800) 658-8898
Fax: (703) 837-1233
http://www.nhpco.org
The Area Agency on the Aging Network
PLEASE NOTE: This network can be reached by contacting The National Council on the
Aging, Inc. (NCOA) at the address and phone number below. The Area Agency on the
Aging Network offers a wide variety of resources for elderly patients, some of which
may be helpful for the older person with ALS. The National Association of Area Agencies
on the Aging, along with the National Association of State Units on Aging, provide
a service called the Eldercare Locator. Staffed by trained professionals, the service
can help individuals locate community-based assistance services such as transportation,
home healthcare and friendly visiting services.
To reach Eldercare Locator, call (800) 677-1116 (Monday through Friday, 9AM to 11PM
Eastern Time). Although NCOA serves the aging, persons with ALS can order the organization's
information packet. The NCOA publications catalog includes several books on family
caregiving. For patients who are over age 65, NCOA can provide literature on helpful
resources and put people in touch with a network of community-based services that
may be useful for patients with ALS.
National Council on Aging, Inc. (NCOA)
1901 L Street, NW 4th Floor
Washington, D.C. 20036
Phone: (202) 479-1200
TDD: (202) 479-6674
Fax: (202) 479-0735
www.ncoa.org
Travel Resources
- SATH is a volunteer, non-profit that has resumed responsibility
in addressing the needs of the disabled traveler.
The Society for Accessible Travel & Hospitality (SATH)
347 Fifth Ave, Suite 605
New York, NY 10016
Tel: 212-447-SATH (7284)
Fax: 212-447-1928
http://www.sath.org
- AMTRAK has special cars adapted for wheelchair travelers. Reservations
should be made well in advance.
AMTRAK
Phone: (800) USA-RAIL (872-7245)
http://www.amtrak.com
- Flying Wheels Travel arranges travel plans for people with disabilities.
The organization is familiar with accessible hotels, motels, resorts, cruise ships,
etc.
Flying Wheels Travel, Inc.
143 W. Bridge Street
Owatonna, MN 55060
Phone: (507)451-5005
Fax: (507) 451-1685
http://www.flyingwheelstravel.com/
- Perpetual Travel provides information and links to travel websites
for people with disabilities.
http://perpetualtravel.com/rtw/rtwdisabled.html
- Mobility International USA is an organization dedicated to empowering
people with all types of physical disabilities to realize their human rights through
international exchange and international development
- Travelin' Talk is an information network providing assistance
to disabled travelers.
Travelin' Talk Network
- Access-Able Travel provides travel resources for people with special
needs. Access-Able Travel
Source
Travel Books
- Fodor's Great American Vacations for Travelers with Disabilities:
Fodors Travels Publications
- How to Travel: A Guidebook for Persons with a Disability
Fred
Rosen Science and Humanities Press
- Wheelchair Around the World
Patrick D. Simpson Pentand
Press
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