Resources

MDA

ALS Division
Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
(800) 572-1717
www.als-mda.org

See www.als-mda.org/clinics/alsserv.html for a list of MDA/ALS centers.

PERIODICALS

The MDA/ALS Newsmagazine

Published monthly by MDA, this newsmagazine features timely and authoritative articles on ALS research, and information about living with the disease for people with ALS and their caregivers. This publication is free to all those registered with MDA. Call your local MDA office to register. Back issues are also available.

Quest

Published six times a year, this national magazine features articles, helpful information and product advertisements dealing with many aspects of living with neuromuscular diseases, including ALS. Free to those registered with MDA. Back issues available.

VIDEOS

Breathe Easy: A Respiratory Guide for People Living With Neuromuscular Diseases

This medical education video explores options for assisted breathing devices and techniques.

Breath of Life

This version of "Breathe Easy" is geared for use by physicians and other medical professionals.

Support Groups: The MDA Support Group and You

Co-chairpersons of the ALS Division of MDA Steven and Jennifer Bishop speak to families who’ve just received a diagnosis of neuromuscular disease but haven’t yet attended a support group meeting.

Support Groups: Your MDA/ALS Support Group: Getting Started

In this video the Bishops provide information intended for use at a new support group’s inaugural meeting.

Support Groups: ALS: Maintaining a Positive Perspective

The Bishops address existing ALS support groups in this video.

BOOKLETS

ALS: Meals for Easy Swallowing
This is a 125-page books of recipes and suggestions on preparing easy-to-swallow food.

Facts About Amyotrophic Lateral Sclerosis
This newly revised MDA booklet describes the disease’s symptoms, causes and treatments.

Los Hechos Sobre la Esclerosis Lateral Amiotrófica (ALS)
This is the Spanish version of "Facts About ALS."

101 Hints to "Help-With-Ease" for Patients With Neuromuscular Disease
This booklet by an MDA clinic director and an occupational therapist describes simple low-tech solutions for helping people with neuromuscular diseases in tasks of daily living, such as dressing, sleeping, grooming and eating.

These MDA publications and videos are available through local MDA offices, or can be ordered at www.mda.org/publications/puborder.aspx or by calling (800) 572-1717 and asking for the Publications Department.

CHAT ROOMS

ALS Conference Series

MDAchat regularly schedules a series of online conferences led by leading ALS researchers and clinicians. Check at www.mda.org/chat/calendar.html for the schedule for these conferences and the following chats.

Living With ALS

In this chat, people with ALS and caregivers share information about life with ALS and making it better.

PALS With Children

This chat is for parents affected by ALS.

To find out about other MDA chats that may be of interest to those with ALS, go to www.mda.org/chat/calendar.html.

RESOURCES ABOUT ALS

BOOKS

ALS — A Guide for Patients, by D. Eric Livingston, M.D., 16 pages. Available online at home.earthlink.net/~jakesan/pages/guide1.html.

The late Dr. Livingston, who had ALS, drew up this helpful guide, which covers many topics, including practical tips, positive attitude and end-of-life issues.

ALS – Lou Gehrig’s Disease, by Mary Dodson Wade, 128 pages, 2001, $20.95. Enslow Publishers, www.enslow.com, (800) 398-2504.

Part of the publisher’s Diseases and People series, this book is written for grades 6 and up but is appropriate for a general audience and would be especially helpful in explaining the disease to children, family members and friends.

Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, 2nd ed., by Hiroshi Mitsumoto, M.D., and Theodore L. Munsat, M.D., 470 pages, 2001, $39.95. Demos Publications, (800) 532-8663, www.demosmedpub.com/book111.html.

This superb book covers all aspects of ALS treatment. Mitsumoto directs the Eleanor and Lou Gehrig MDA/ALS Center at Columbia Presbyterian Medical Center in New York.

ORGANIZATIONS AND WEB SITES

The ALS Digest
www.alslinks.com/currentdigest.htm
e-mail: mda@mdausa.org

A good source for news about ALS, and a place to ask questions.

ALS March of Faces – Moe’s ALS Kids’ page
www.march-of-faces.org/KIDS/moe7.html

This site offers a good explanation of ALS for children, including animated links to a biography of Lou Gehrig, Neuroscience for Kids and NASA.

ALS Resource Page
www.alslinks.com

This site offers links to many sources of ALS information, the "Internet Portal for the ALS Community." The site includes issues of the ALS Digest.

ALS Survival Guide
www.lougehrigsdisease.net

Douglas Edwin Eshleman, who had ALS, and his survivors offer ideas from and connections to many sources of ALS information.

America Online Subscribers’ ALS Bulletin Board
Keyword "dis" or "disabilities"
Select "General Discussions"
Select "List Topics"
Select "ALS Lou Gehrig" as Disease

American Academy of Neurology Practice Parameters
www.aan.com/professionals/practice/pdfs/g10058.pdf

This set of guidelines, developed by top ALS experts, addresses some of the major management issues and highlights areas in which more research is needed.

The Baylor College of Medicine
The Ronny and Linda Finger MDA/ALS Center
Department of Neurology
6501 Fannin St., NB302
Houston, TX 77030
www.bcm.tmc.edu/neurol/struct/als/als1.html

National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
(800) 999-6673
www.rarediseases.org

NORD helps needy individuals obtain necessary prescription drugs through the medication assistance programs it administers in conjunction with pharmaceutical companies.

RESOURCES FOR CAREGIVERS

BOOKS

Always on Call, edited by Carol Levine, 213 pages, 2000, $20. United Hospital Fund, (888) 291-4161, www.uhfnyc.org.

This collection of personal essays and professional articles explores the world of long-term care, especially as it relates to the adult caregiver of an elderly relative.

Candlelights for the Family Caregiver’s World: Spiritual Keys for Avoiding Caregiver Burnout and Promoting Inner Peace, by Alice Johnson, Ed.D., and John Johnson Jr., Ed.D., 374 pages, 2001. Mal-Jonal Productions, (305) 353-4061, www.maljonal.com.

This book, Christian in orientation, offers practical and spiritual advice for caregivers.

Caregivers and Personal Assistants, by Alfred H. DeGraff, 3rd ed., 512 pages, 2002, $24.95. Saratoga Access Publications, (970) 484-5595, www.saratoga-publications.com.

The author advises readers to approach hiring and keeping personal assistants the way they’d approach running a small business.

Caring and Competent Caregivers, by Robert Moroney, Ph.D., et al., 196 pages, 1998, $18 paperback, $40 hardcover. University of Georgia Press, (800) 266-5842, www.uga.edu/ugapress.

This book is geared to help professionals understand the needs of families and to communicate better with those they serve.

Counting on Kindness: The Dilemma of Dependency, by Wendy Lustbader, 206 pages, 1991, FreePress, (206) 985-5400, www.lustbader.com.

Lustbader, a medical social worker, has taken a unique look at caregiving from the perspective of the person recieving the care.

The Fearless Caregiver, edited by Gary Barg, Editor-in-Chief, Today’s Caregiver magazine, 264 pages, 2001, $11.96 paper, Capital Books, (800) 758-3756, www.capital-books.com.

Though heavily slanted toward Alzheimer’s disease, this collection of articles by Barg and more than 30 other experts, including doctors, nurses, psychologists, physical therapists, counselors, clinical social workers, lawyers, financial planners, spiritual leaders and experienced caregivers, is like a support group in a book.

Help Yourself: Problem Solving for the Disabled, by Douglas R. Bucy, 176 pages, 1996, $14.95. Macmillan.

The late author wrote about his experience of living with ALS. The book covers the roles of the primary caregiver and professional caregivers, and detailed information about home modifications and daily living aids. Out of print; check larger libraries.

Helping Yourself Help Others: A Book for Caregivers, by Rosalynn Carter with Susan K. Golant, 278 pages, 1996, $14. Times Books, Three Rivers Press, (800) 733-3000, www.randomhouse.com.

The former first lady recounts her experiences of helping care for her father, grandparents and her husband’s family. The text is filled with helpful suggestions for individuals and organizations, as well as words of comfort and support. Chapters cover preparing yourself, emotional dilemmas, family harmony, isolation, burnout and dealing with professionals.

Helpmates: Support in Times of Critical Illness, by Harry A. Cole, 157 pages, 1991, $12.95. Westminster/John Knox Press, (800) 227-2872, amazon.com.

Cole is a professor of history and philosophy who cared for his wife after she had a stroke. His book focuses on ways of meeting the emotional and spiritual challenges facing the caregiving spouse.

Making the Moments Count: Leisure Activities for Caregiving Relationships, by Joanne Ardolf Decker, Ph.D., 208 pages, 1997, $17.95 paperback $53.00 hardcover. Johns Hopkins University Press, (410) 516-6900, www.press.jhu.edu/press/.

This volume offers a detailed strategy for building leisure into the caregiving experience for individuals of different ages and abilities.

Nursing Procedures, 3rd ed., by Kathy Goldberg, editor, 832 pages, 2000, $49.95. Springhouse Corp., (800) 638-3030, www.lww.com/nursing/.

This book contains how-to instructions and illustrations on safety, transfer, hygiene, nutrition and other issues.

The Resourceful Caregiver: Helping Family Caregivers Help Themselves, by the National Family Caregivers Association, 168 pages, 1996, $24.95. Mosby Lifeline, (800) 545-2522, www.us.elsevierhealth.com.

This exhaustive listing of every kind of resource needed to face the challenges of caregiving emphasizes the importance of getting help and caring for yourself. The book is an indispensable aid to the family or professional caregiver.

Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, by Cappy Capossela and Sheila Warnock, 287 pages, 1995, $14. Simon & Schuster, www.simonsays.com.

This book offers a unique group approach to turning a circle of ordinary people into a powerful caregiver team.

ORGANIZATIONS AND WEB SITES

Access to Respite Care and Help (ARCH) National Resource Center
Chapel Hill Training-Outreach Project
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
(919) 490-5577
www.chtop.com

ARCH offers information on respite programs across the country. You can call for information, or search the database at the Web site.

American Association of Retired Persons
(800) 424-3410
www.aarp.org

Under the main topic of "Health and Wellness," try "caregiving" in the index or search for topics such as assistive devices, caregiving support, financial matters and care options. AARP services are geared toward anyone age 50 or older, and information may be of use to all.

Caregiver Network Inc.
561 Avenue Road, Suite 206
Toronto, ON M4V 2J8
CANADA
(416) 323-1090
e-mail: karenh@caregiver.on.ca
www.caregiver.on.ca

This Canadian organization is an information source to make your life as a caregiver easier.

CareGivers.com
17 Applegate Court
Madison, WI 53713
(608) 256-0488
email: suppport@betteraging.com
www.caregivers.com

This is part of the AgeNet Eldercare Network.

Caregiving.com
P.O. Box 224
Park Ridge IL 60068
(773) 334-5794
www.caregiving.com

From The Center for Family Caregivers, the site provides links and solutions and publishes the Caregiving Newsletter.

FamilyCareAmerica
www.familycareamerica.com

Working with corporate and community partners and employers, FCA helps family caregivers help themselves and the ones they love, and is designed to identify resources in your community automatically.

Family Caregiver Alliance
690 Market St., Suite 600
San Francisco, CA 94104
(415) 434-3388
email:info@caregiver.org
www.caregiver.org

This organization focuses on caregiving for people with brain and neurological problems. Fact sheets and newsletter cover caregiving tips, juggling work and family, and other relevant topics. The FCA is a nationally recognized information center on long-term care.

National Association for Home Care
228 Seventh St. SE
Washington, DC 20003
(202) 547-7424
www.nahc.org

This is a professional association for caregivers and caregiver organizations. The Internet site contains the Home Care and Hospice Locator, and information on how to choose a home health-care agency.

National Family Caregivers Association
10400 Connecticut Ave., Suite 500
Kensington, MD 20895-3944
(800) 896-3650
Fax: (301) 942-2302
email: info@nfcares.org
www.nfcacares.org

NFCA has extensive information on caregiving topics and member organizations. It publishes the Take Care Newsletter and other materials, and is a grassroots organization focusing on public policy issues related to caregiving.

Visiting Nurses Associations of America
99 Summer St., Suite 1700
Boston, MA 02110
(617) 737-3200
Fax: (617) 737-1144
www.vnaa.org

Visiting Nurse agencies care for patients denied service because they don’t meet low-income levels for Medicaid, or don’t have full coverage for services, or have exhausted their private insurance benefits. Visiting Nurse agencies also offer specialized services, such as adult day care, hospice care, and Meals on Wheels, and are often the primary community source for preventative health services.

The Well Spouse Foundation
63 W. Main St., Suite H Freehold, NJ 07728
(800) 838-0879
email: info@wellspouse.org
www.wellspouse.org

Well Spouse is a national membership organization which gives support to wives, husbands and partners of the chronically ill and/or disabled.

MAGAZINES AND NEWSLETTERS

Caregiving Newsletter
The Center for Family Caregivers
Tad Publishing Co.
P.O. Box 224
Park Ridge IL 60068
(773) 334-5794
www.caregiving.com

FamilyCareAmerica Newsletter
email: newsletter@familycareamerica.com
www.familycareamerica.com

An e-mail newsletter from FamilyCareAmerica, a media, publishing and products marketing company focused on the needs of caregivers in America. Helps assess, plan, manage, and monitor care, while recommending products.

Take Care Newsletter
National Family Caregivers Association
10400 Connecticut Avenue, #500
Kensington, MD 20895-3944
www.nfcacares.org

Today’s Caregiver Magazine
6365 Taft St., Suite 3003
Hollywood, FL 33024
(800) 829-2734
email: info@caregiver.com
www.caregiver.com

Helps caregivers work with health-care professionals, plan for long-term care and deal with specific problems. Also publishes the Caregiver.com Weekly Newsletter at newsletters@caregiver.com.

BOOKS BY AND ABOUT PEOPLE WITH ALS

Bigger Than the Sky — The True Love Story of Emilie and Her Grandfather, by Helene E.D. Nichols, 130 pages, 2003. Xlibris, (888) 795-4274, www.Xlibris.com.

An account of the bond between Emilie and her grandfather who is affected by ALS.

Falcon’s Cry: A Desert Storm Memoir, by Major Michael Donnelly with Denise Donnelly, 251 pages, 1998, $29.95. Praeger Publishers, www.greenwood.com (203) 226-3571.

This biography traces Donnelly’s experience as a career Air Force officer who developed ALS after serving in the Gulf War.

How Will They Know If I’m Dead? Transcending Disability and Terminal Illness, by Robert C. Horn III, with preface by C. Everett Koop, M.D., 120 pages, 1996, $25.95. GR Press/St. Lucie Press.

A former political science professor and an authority on the Soviet Union, Horn describes his eight-year struggle with ALS, and how his family coped. The book, which Horn wrote by operating his computer with his foot, recounts how he found life with ALS worth living.

I Choose to Live: A Journey Through Life With ALS, by William Sinton, 155 pages, 2003. Banbury Publishing, (800) 2247-6553, www.banburypublishing.com.

This autobiography chronicles the experiences of Sinton, an astrophysicist and professor of physics and astronomy who has ALS.

In the Garden of Gethsemane, by Joan Schuster with James A. Costa Jr., 196 pages, 2001, $12 plus $3 for mailing. Order from Jim Costa, 6 Hidden Valley, Elma, NY 14059, (716) 652-6755.

This honest, often raw, story of courage introduces a woman who doesn’t regret what’s lost to ALS but who fully appreciates what’s left.

Journeys with ALS: Personal Tales of Courage and Coping with Lou Gehrig’s Disease, by David Feigenbaum, 290 pages, 1998, $25. DLRC Press, mary@davidlawrence.com.

The author has compiled 30 candid personal accounts of people affected by ALS.

Learning to Fall: The Blessings of an Imperfect Life, by Philip Simmons, 176 pages, 2002, $16.95. Bantam Dell.

This book is a literary gem about living with ALS, and provides a new lens through which to look at the significance of living.

Meaning of a Disability: The Lived Experience of Paralysis, by Albert B. Robillard, 191 pages, 1999, $21.95 paper. Temple University Press, (800) 621-2736, www.temple.edu/tempress.

This author combines autobiography with sociological research as he focuses on continuing as "normal" a life as possible with ALS.

Morrie: In His Own Words, by Morrie Schwartz, 144 pages, 1999, $18. Walker & Co., (800) 289-2553, www.walkerbooks.com, reissue of Letting Go: Morrie’s Reflections on Living While Dying, published in 1996.

Schwartz’s book presents his insights on facing terminal illness under such headings as handling frustration, reaching acceptance, reviewing the past, being kind to yourself and developing a spiritual connection.

On Any Given Day, by Joe Martin and Ross Yockey, 181 pages, 2000, $21.95. John F. Blair Publisher, (800) 222-9796, www.blairpub.com.

A banker and North Carolina community leader, Joe Martin tells the story of his ALS with humor, inspiration and honesty.

Terminally Sane, by Jay A. Rouelle, 153 pages, 1999, $18. Jarou Publishing, (802) 223-5347, trouelle@pshift.com.

Some readers will appreciate Rouelle’s honesty about ALS, while those dealing with recent diagnoses might find his frankness overwhelming. His perspective from inside a nursing home is eye-opening.

Tuesdays With Morrie, by Mitch Albom, 192 pages, 1997, $11.95 paperback. Doubleday, www.randomhouse.com/doubleday.

The best-selling biography of Morrie Schwartz was written by his former student, Mitch Albom, and is an inspirational chronicle of his last days.

Walking on Central Boulevard, by Marion Lippert, 127 pages, 1998, $19.95. Blue Note Books, (800) 624-0401, www.bluenotebooks.com/nonfict.htm.

A mother’s account of her daughter’s life with ALS, this is the story of a family’s search for a cure through both alternative and conventional medical practice.

When It Rains..., by Marjorie Spoto. www.whenitrains.com.

This novel is a romantic drama about how three sisters cope with the death of their mother from ALS and with their fears that they, too, will develop the disease.

RESPIRATION, SPEECH AND SWALLOWING DIFFICULTIES

BOOKS AND VIDEOS

Breathe Easy: A Respiratory Guide for People Living With Neuromuscular Diseases
and Breath of Life, MDA.
See MDA.

Communication and Swallowing Solutions for the ALS/MND Community: A CINI Manual, by Marta S. Kazandjian, 89 pages, 1997, $57.95. Singular Publishing Group, www.delmarhealthcare.com, (800) 347-7707.

Written by the professionals at Communication Independence for the Neurologically Impaired, this manual covers the many options available to solve communication and swallowing problems as they arise in ALS and illustrates how these solutions can be used to support and resolve patients’ needs.

Guide to the Evaluation and Management of Neuromuscular Disease, by John R. Bach, M.D., FAAPMR, FCCP, 1999, $32. Hanley & Belfus, (800) 545-2522, or try a medical library.

Bach is a leading researcher in the management of neuromuscular respiratory problems and emphasizes the use of noninvasive techniques. The book addresses all aspects of
caring for a person with a neuromuscular disease and is written in easily understandable language.

Management of Patients With Neuromuscular Disease, by John R. Back, M.D., 2003, $35. Hanley & Belfus, (800) 545-2522, or try a medical library.

Noninvasive Mechanical Ventilation, by John R. Back, 2002, Hanley & Belllfus, (800) 545-2522, or try a medical library.

Pulmonary Rehabilitation: The Obstructive and Paralytic Conditions, edited by John R. Bach, M.D., 1996, $69.95. Hanley & Belfus, (800) 545-2522, or try a medical library.

ORGANIZATIONS AND WEB SITES

American Speech-Language-Hearing Association (ASHA) Action Center
10801 Rockville Pike
Rockville, MD 20852
(800) 638-8255
www.asha.org
e-mail: actioncenter@asha.org

The information here about communication and swallowing difficulties includes Proserv, assistance in finding a speech-language pathologist in your area.

Communication Independence for the Neurologically Impaired (CINI)
C/O Kornreich Technology Center
201 I.U. Willets Road
Albertson, NY 10507
(516) 465-1629
www.cini.org
e-mail: cini@cini.org

This nonprofit organization serves as a resource for patients and professionals about communication and swallowing problems.

MAGAZINES AND NEWSLETTERS

IVUN News
International Ventilator Users Network
4207 Lindell Blvd., Suite 110
St. Louis, MO 63108-2915
(314) 534-0475
www.post-polio.org/ivun

A newsletter discussing issues and new ideas in ventilator use, $17/year.

STS (Speech to Speech) Phone Assistance
P.O. Box 88
Belleville, WI 53508
www.stsnews.com

STSnews.com is an online publication for the speech disability community and the public, too.

TECHNOLOGY AND COMMUNICATION

BOOKS, VIDEO AND CD-ROM

Computer and Web Resources for People With Disabilities: A Guide to Exploring Today’s Assistive Technology, 3rd ed., by the Alliance for Technology Access, 366 pages, 2000, $20.95. Hunter House, (800) 266-5592, ordering@hunterhouse.com.

This comprehensive guide helps in determining your needs and finding the right equipment. The book is a good first stop if you’re exploring assistive technology.

"Families, Culture and Alternative and Augmentative Communication (AAC)," CD-ROM, 1999, $49.95 plus shipping and handling. Program Development Associates, (800) 543-2119, www.pdassoc.com/fca.html.

This award-winning CD-ROM may prove useful in selecting and using communication devices. Bilingual and interactive, the format is compatible with both Macintosh and Windows.

The Road to Funding, by Prentke Romich Company, 68 pages, 1998, free. Prentke Romich Company, (800) 262-1984 or download from www.prentrom.com/funding/funding.html.

Though published by a major manufacturer of augmentative communications equipment, this guide doesn’t emphasize products. It’s a comprehensive guide to funding sources and how best to approach them, including private insurance, vocational rehabilitation programs, Medicaid and Medicare.

Tech Talk, four-part video series, 1999, $69 each or $229 for set of four. Program Development Associates, (800) 543-2119, www.pdassoc.com/tts.html.

The series covers telecommunications equipment, computer access, augmentative communication, and home and workplace accommodations.

ORGANIZATIONS AND WEB SITES

Abledata
8630 Fenton St., Suite 930
Silver Spring, MD 20910
(800) 227-0216
www.abledata.com

Abledata is a source of information on assistive technology sponsored by the Department of Education. The entire database is available for searching on the Web site.

Alliance for Technology Access
2175 E. Francisco Blvd., Suite L
San Rafael, CA 94901
(415) 455-4575
e-mail: ATAinfo@ATAccesss.org
www.ATAccess.org

ATA is a network of community-based resource centers, developers and vendors, and others dedicated to providing information and support services to adults with disabilities, and increasing their use of standard, assistive and information technologies.

Brain Actuated Technologies Inc.
1350 President St. Yellow Springs, OH 45387-1815
(ww937) 767-2674
e-mail: admin@brainfingers.com
www.brainfingers.com

This company makes alternative human-computer interfaces.

Center for Assistive Technology and Environmental Access
Crestwood Communication Aids
6625 N. Sidney Place, Dept. 21F
Milwaukee, WI 53209-3259
(414) 352-5678
e-mail: crestcomm@aol.com
www.communicationaids.com

Ruth Leff, a Milwaukee speech-language pathologist, founded Crestwood Communication Aids 23 years ago and has patented eight communication devices for children and adults.

Easy Access to Software and Information
P.O. Box 818
Lake Forest CA 92609
(949) 916-2837
e-mail: info@easi.cc
www.easi.cc

EASI provides information and guidance in the area of access-to-information technologies for people with disabilities.

National Rehabilitation Information Center
4200 Forbes Blvd., Suite 202
Lanham, MD 20706
(800) 346-2742
e-mail: naricinfo@heitechservices.com
www.naric.com

This resource touches on products and home modifications, gives results of federal research, and lists helpful programs and newsletters related to living with disabilities. There’s a charge for some services.

RESNA (Rehabilitation Engineering Society of North America)
1700 N. Moore St., Suite 1540
Arlington, VA 22209-1903
(703) 524-6686
e-mail: info@resna.org
www.resna.org

This association supports rehabilitation technology research to benefit people with disabilities. RESNA’s Technical Assistance Project assists states’ assistive technology programs, as provided by federal law.

The Trace Research & Development Center
University of Wisconsin-Madison
2107 Engineering Centers
1550 Engineering Drive Madison, WI 53706
(608) 262-6966
e-mail: info@trace.wisc.edu
www.trace.wisc.edu

This university facility conducts research on technological devices that can help people with ALS and other disabilities communicate and use computers.

Major computer and software manufacturers also have accessible products; check their Web sites.

MAGAZINES AND NEWSLETTERS

Closing the Gap
526 Main St. P.O. Box 68
Henderson, MN 56044
(507) 248-3294
e-mail: info@closingthegap.com
www.closingthegap.com

This organization has a bimonthly newsletter, database and annual conference on the use of computer technology by and for people with disabilities.

Communication Outlook
Artificial Language Laboratory
405 Computer Center
Michigan State University
East Lansing, MI 48824-1042
(517) 353-0870
e-mail: artlang@pilot.msu.edu
www.msu.edu/~artlang/CommOut.html

This international quarterly magazine focuses on developments in the world of communication aid technology.

MEDICAL EQUIPMENT AND HOME MODIFICATIONS

MDA
Many local MDA offices have loan closets featuring used durable medical equipment. They can also help you locate other local sources and funding options.

Disability Dealer
jjMarketing
1205 Savoy St., Suite 101
San Diego, CA 92107
(619) 222-8735
www.blvd.com

This online directory features a broad range of new and used durable medical equipment for sale.

Department of Housing and Urban Development
451 7th St. SW, Room 6116
Washington, DC 20410
(202) 708-1112
www.hud.gov/groups/disabilities.aspx

This page links to information about federal laws and programs providing housing support for people with disabilities.

Med-Sell
www.medsell.com

This site offers classified ads for hundreds of items of used medical equipment in dozens of categories.

National Mobility Equipment Dealers Association
11211 N. Nebraska Ave., Suite A-5
Tampa, FL 33612
(800) 833-0427
www.nmeda.org

This forum enables consumers to get help regarding equipment for their needs, and keeps users informed about the ever-changing industry.

Quest
www.mda.org/publications/Quest/

Check the articles and ads in MDA’s bimonthly national magazine for new information about helpful products and services.

Wheelchair Accessible Home Clearinghouse
Wheelchair Access Inc.
P.O. Box 12
Glenmoore, PA 19343
(610) 942-3266
e-mail: info@waccess.org
www.waccess.org

Search the classified ads for current listings of real estate and used durable medical equipment, vans and accessories.

FINANCIAL, LEGAL AND MEDICAL RESOURCES

Employment & Insurance Issues

COBRA
(866) 487-2365
www.dol.gov/dol/topic/health-plans/cobra.htm

The Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers and their families who lose their health benefits the right to continue group health benefits for limited periods of time under certain circumstances.

FMLA
(866) 4-USA-DOL
www.dol.gov/dol/topic/benefits-leave/fmla.htm

The Family and Medical Leave Act (FMLA) provides certain employees with up to 12 weeks of unpaid, job-protected leave per year for family and medical reasons. It also requires that group health benefits be maintained during the leave.

Internal Revenue Service (IRS)
(800) 829-1040
www.irs.gov/

Check with the IRS for copies of Publications 503 and 524, which may offer tax credits if you have a dependent with a disability. You can order free tax forms by calling (800) TAX FORM.

End-of-Life Issues

Fact Sheet on Durable Powers of Attorney
www.caregiver.org/factsheets/attorney_powers.html

This fact sheet from the Family Caregiver Alliance answers many of the questions you may have about durable powers of attorney and living trusts.

Hospice Foundation of America
(800) 854-3402
www.hospicefoundation.org

This organization assists those coping either personally or professionally with terminal illness, death, and the process of grief, through publications, conferences and information on choosing a hospice.

National Hospice and Palliative Care Organization
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
(703) 837-1500
e-mail: info@nhpco.org
www.nhpco.org

This is a nonprofit organization of hospices, professionals and volunteers. The Web site has database of hospices by state.

Partnership for Caring: America’s Voices for the Dying
1620 Eye St. NW, Suite 202
Washington, DC 20006
(202) 296-8071
(800) 989-9455
e-mail: pfc@partnershipforcaring.org
www.partnershipforcaring.org

This organization operates a national crisis and information hotline dealing with end-of-life issues and provides state-specific living wills and medical powers of attorney.

Legal Resources

Disability Rights Advocates
449 15th St., Suite 303
Oakland, CA 94612-2821
(510) 451-8644
e-mail: general@dralegal.org
www.dralegal.org/about

DRA advocates on behalf of people with all types of disabilities, and publishes a periodic statistical report, Disability Watch, analyzing barriers and emerging issues.

Fact Sheet on Finding an Attorney
www.caregiver.org/factsheets/finding_attorney.html

The Family Caregiver Alliance Clearinghouse offers help in finding a knowledgeable, competent attorney.

National Academy of Elder Law Attorneys
1604 N. Country Club Road
Tucson, AZ 85716
(520) 881-4005
www.naela.org

This organization can provide information on living wills and durable powers of attorney, among other legal issues.

National Association of Protection and Advocacy Systems
900 2nd St. NE, Suite 211
Washington, DC 20002
(202) 408-9514
e-mail: napas@vipmail.earthlink.net

This organization can connect you with the nearest disability rights P&A system and client assistant program (CAP), as mandated by federal law. These agencies advocate for and represent people with disabilities in issues involving their legal rights.

Medicare/Medicaid

Centers for Medicare and Medicaid Services (CMS)
7500 Security Boulevard
Baltimore, MD 21244
(877) 267-2323
www.cms.hhs.gov
(800) MEDICARE
www.medicare.org

Social Security Office
Social Security Administrator
Office of Public Inquiries
Windsor Park Building
6401 Security Blvd.
Baltimore, MD 21235
(800) 772-1213
www.ssa.gov/disability

MDA/ALS Centers

All of MDA’s 230 hospital-affiliated clinics provide a full array of diagnostic and follow-up services to people with ALS. To find the clinic nearest you, check your local phone book, call MDA at (800) 572-1717 or go to www.mda.org/clinics/ and type in your zip code.

In 2003, MDA’s ALS Division was managing 30 designated MDA/ALS research and clinical centers with a specific focus on ALS. Visit www.als-mda.org/clinics/alsserv.html for an up-to-date listing of these centers.

To order copies of When a Loved One Has ALS, or other MDA materials pertaining to ALS, please link to www.mda.org/publications/puborder.aspx.