Independence Resources

by Quest Staff on November 1, 2004 - 10:19am

People you meet through MDA activities can be a great source of tips and referrals for your independence questions. In addition, Quest has published many stories on all the topics mentioned in these articles.

Talk to your local Center for Independent Living (CIL), which can be located through the Independent Living Research Utilization project directory.

Avoiding Attendants from Hell: A Practical Guide to Finding, Hiring & Keeping Personal Care Attendants, by June Price, Science & Humanities Press, 1998

Caregivers and Personal Assistants, by Alfred H. DeGraff, Saratoga Access Publications, 2002


American Association of People with Disabilities
(800) 840-8844

Enabling Romance: A Guide to Love, Sex and Relationships for the Disabled (and the People Who Care About Them), by Ken Kroll and Erica Levy Klein, No Limits Communications, 2001

Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being, by Danuta M. Krotoski, Margaret A. Nosek, and Margaret A. Turk, Paul Brookes Publishing, 1996


HEATH Resource Center

Trade Schools, Colleges & Universities

State departments of Vocational Rehabilitation or Education


Centers for Medicare and Medicaid Services
Disability and Aging
(866) 226-1819

Federal Employment of People with Disabilities
(202) 606-1800

Job Accommodation Network
(800) 526-7234

Job-Hunting for the So-Called Handicapped or People Who Have Disabilities, by Richard Nelson Bolles and Dale S. Brown, Ten Speed Press, 2001

Medicaid Buy-In
(877) 267-2323, press 5
Or call your state Medicaid or Social Security office

Office of Disability Employment Policy
(866) 633-7365
Has information about starting a business.

Plan for Achieving Self-Support (PASS)
(800) 772-1213
Lets you set aside money toward a goal such as college expenses, supplies to start a small business or transportation, without threatening Social Security benefits.

Social Security’s Ticket to Work Program
(866) 968-7842


Assisted Living Facilities

Assisted Living Federation of America
(703) 691-8100

Assisted Living Directory
(866) 967-9270

Assisted Living Info
(800) 536-2657

Association for Community Living
(413) 732-0531

National Center for Assisted Living
(202) 842-4444

Section 8 Made Simple: Using the Housing Choice Voucher Program to Assist People with Disabilities, by Ann O’Hara and Emily Cooper, Technical Assistance Collaborative, 2003
(617) 266-5657
Free PDF download

U.S. Department of Housing and Urban Development
(202) 708-1112


Access Board
(800) 872-2253
Also known as the Architectural and Transportation Barriers Compliance Board.

(303) 733-9324
An advocacy organization promoting supported communities for people with disabilities.

Americans with Disabilities Act Mediation Program
(U.S. Department of Justice)
(888) 528-1609

Disabled Rights: American Disability Policy and the Fight for Equality, by Jacqueline Vaughn Switzer, Georgetown University Press, 2003

Independent Living Research Utilization project (ILRU)
Directory of Statewide Independent Living Councils (SILC)
(713) 520-0232

National Council on Disability
(202) 272-2004

National Council on Independent Living
(877) 525-3400

U.S. Department of Justice Disability Rights Section
(800) 514-0301


(Editor's note: In 2009, MDA released "Road Map to Independence for Young Adults," a guide to becoming your own advocate and living successfully with neuromuscular disease. You may download a copy of the guide at no charge by visiting

Family Village
(608) 263-5973
Links to a large volume of transition-related resources.

Healthy and Ready to Work National Center
(202) 884-8650
Resources to help youth with special health care needs transition to adulthood with health care, funding, employment and maximum independence.

The Road Ahead: Transition to Adult Life for Persons with Disabilities (2nd edition), ed. by Keith Storey, Paul Bates and Dawn Hunter, Training Resource Network, 2008

University of Washington
Adolescent Health Transition Project
(206) 685-1358
Free downloadable transition publications, including: Health History Summary for Teens, Adolescent Autonomy Checklist, an adolescent transition resource notebook and more (some in Spanish).


Call your State Department of Transportation and local Center for Independent Living (CIL) to find out about local accessible transportation options.

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