FAMILY RESOURCES

Listed below are a wide variety of resources available to people with disabilities and their families. While many of the resources are based in the United States (as many of our members are from the U.S.), we have tried to provide international resources wherever possible. If you are not sure where to turn for information, good places to start are your local departments of health and education. If you have additional resources that you would like to add, please contact the IFOPA.

 

United States Resources

Publications

Health Care Financing: A Guide for Families. Beckett, J., 1989. 78 pp.
Contact: National Maternal and Child Health Resource Center, University of Iowa, College of Law Building, Iowa City, IA 52242. (319) 355-9067. $5.50 plus $2.50 postage and handling

Reflects experience of a parent with a special needs child, covers private health care plans, federal programs, supplemental security income, resource agencies

 

HEATH Resource Center
One Dupont Circle, NW, Suite 800, Washington, D.C. 20036-1193, (800) 544-3284

National clearinghouse on postsecondary education for individuals with disabilities, numerous pamphlets dealing with issues of "How to Choose a College: Guide for the Student with a Disability," "Making the Most of Your Opportunities: A Guide to Postsecondary Education for Adults with Disabilities," etc.

 

Home Health Aides: How to Manage the People who Help You. DeGraff, Alfred H.
Saratoga Access Publications, P.O. Box 2346, Clifton Park, NY 12065

 

National Center for Education in Maternal and Child Health
2000 15th Street North, Suite 701, Arlington, VA 22201-2617. (703) 524-7802.

Publishes Children with Special Health Needs: A Resource Guide, which contains numerous resources for families, as well as a listing of the directors of state programs for children with special health needs. More information can be found online at www.ask.hrsa.gov/mch.cfm.

 

National Information Center for Children and Youth with Disabilities
P.O. Box 1492, Washington, D.C. 20013. (800) 695-0285.

Provides personal responses to specific questions, referrals to other organizations, information packets, publications, technical assistance, NICHCY New Digest published 3 times per year. Ask for a listing of publications which are available at no charge.

 

Parenting Plus: Raising Children with Special Health Care Needs. 1990. 295 pp.
Contact: Viking Penguin Press, 375 Hudson Street, New York, NY 10014. (212) 366-2000. $19.95

Winner of 1991 media award from the President's Committee on Employment of People with Disabilities, specific chapters focus on combatting self pity, teaching children to care for themselves, making friends and avoiding enemies, and helping adolescents develop independence.

 

Paul H. Brookes Publishing
P.O. Box 10624, Baltimore, MD 21285-0624, (800) 638-3775

Publishes numerous books for families dealing with disability, including Your Child and Heath Care: A "Dollars and Sense" Guide for Families with Special Needs and Families, Disability, and Empowerment: Active Coping Skills for Family Intervention

 

Raising a Child who has a Physical Disability. Albrecht, D.G.
Order No. JW 121OD. Exceptional Parent Dept. EPCAT2, P.O. Box 8045, Brick, NJ 08723, (800) 535-1910

Social Security and SSI Benefits for Children with Disabilities. 1991. 20 pp.
Contact: Social Security Administration, Public Information Distribution Center, P.O. Box 17743, Baltimore, MD 21235. (800) 772-1213. Available at no charge.

For parents and caregivers of children with disabilities and adults disabled since childhood, explains benefits you might be eligible for, and explains how claims are evaluated

 

Understanding Your Health Insurance Options: A Guide for Families Who Have Children with Special Health Care Needs. McManus, M.A, 1988. 30 pp.
Contact: Association for the Care of Children's Health, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. (301) 654-6549. $2.75 plus $1.00 shipping/handling

Discusses selecting a plan most suited to your needs, private/public insurance policies

 

U.S. Department of Education, Clearing House on Disability Information
330 C Street, SW, Switzer Building, Room 3132, Washington, D.C., 20202-2524. (202) 732-1241.

The following publications are available at no charge: Pocket Guide to Federal Help for Individuals with Disabilities, Summary of Existing Legislation Affecting Persons with Disabilities.

 

Working Towards a Balance in Our Lives: A Booklet for Families of Children with Disabilities and Special Health Care Needs. 1992. 90 pp.
Contact: Project School Care, Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, (617) 735-6714. $10.00

Discusses education, financing health care, home care, planning for adulthood, recreation, and travel, includes list of resource organizations

 

Your Child with Special Needs at Home and in the Community. 1991, 29 pp.
Contact: Association for the Care of Children's Heath, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814, (301) 654-6549. $2.50

Practical information on family life, managing medical care, school, and finances, organization publishes numerous other publications

 

Magazines and Newsletters

Accent on Living
P.O. Box 700, Bloomington, IL 61702, (800) 787-8444. One year $10.00, Two years $15.00
magazine published quarterly, articles on advocacy, special needs of people with disabilities

Exceptional Parent
P.O. Box 3000, Dept. EP, Danville, NJ 07834. (800) 247-8080. $18.00 per year.
magazine published 8 times per year, articles on education, advocacy, care of children with disabilities

Mainstream
P.O. Box 370598, San Diego, CA 92137-0598. One year for $24.00, Two years $44.00
magazine published 10 times per year, contains articles on advocacy, travel, adaptive equipment, guides to special equipment, etc.

National Organization for Rare Disorders
P.O. Box 8923, New Fairfield, CT 06812-1783, (800) 999-6673
publishes newsletter, distributes information on specific disabilities, operates networking program for families, maintains Rare Disease Database on Compuserve and on the internet

 

Organizations

The following organizations may be able to help address any questions you have and help you find assistance in paying for medical equipment:

Advocates for the Disabled
1314 N 3 Street, Suite 116, Phoenix, AZ 85004-1749, (602) 245-9673

Association for Respite Care for the Handicapped (ARCH)
National Resource Center for Respite and Crisis Care Services
Chapel Hill Training-Outreach Project, 800 Eastonne Drive, Suite 105, Chapel Hill, NC 27514,
(919) 490-5577

Council for Disability Rights (CDR)
176 West Adams, #1830, Chicago, IL 60603, (312) 444-9484. Online: http://www.disabilityrights.org
Information on disability rights, housing, employment, schooling, assistive technology, etc. Jo Holzer of CDR is the parent of a child with FOP and is interested in acting as a resource for other families dealing with FOP.

Direct Link for the Disabled
P.O. Box 1036, Solvang, CA 93464, (805) 688-1603
computerized database available for research

Family Resource Center on Disabilities
20 E. Jackson Boulevard, Room 900, Chicago, IL 60604, (312) 939-3513

NARIC: National Rehabilitation Information Center
855 Colesville Road, Suite 935, Silver Spring, MD 20910-3319, (800) 346-2742
computerized database available for research

Independent Living Research Utilization
2323 S. Shepherd, Suite 1000, Houston, TX 77019, (713) 520-0232

RESNA Technical Assistance Project
call the RESNA organization at 703-524-6686 to find out about state programs for people with special equipment needs

 

The following organizations offer assistance in issues of independent living and home accessibility:

Accent on Living, a magazine for people with disabilities, publishes the following books, which you may find helpful. To place an order, call 1-800-787-8444.

Accent Buyer's Guide (#1461, Cost $12.00)--hundreds of products to help you do things faster and easier, allows for price comparisons

Ideas for Making Your Home Accessible (#1490, Cost $6.50)--over 100 pages full of tips and ideas to help you remodel or build, includes many special devices and where to get them, illustrations

Hometime: Remodeling for Accessibility (Video #3252, Cost $12.95)--focuses on building a low cost entrance ramp, remodeling a kitchen and bathroom, and a look through an accessible home. 30 minutes

An Accessible home of Your Own (#3224, Cost $4.50)--14 articles from Accent Magazine on how to make your home more accessible

Accessible Foundation
P.O. Box 356, Malverne, NY 11565-0356
Resources for home accessibility and travel. Extensive database of products and services.

Barrier Free Environments
P.O. Box 30634, Raleigh, NC 27622, (919) 782-7923
Resources for home accessibility

Disabled Opportunities Center
7323 Engineer Road, San Diego, CA 92111, (619) 573-0800
Resources for home accessibility

Independent Living Centers
Your area may have an independent living center, which offer assistance to people with disabilities who are trying to live their lives as independently as possible.

 

State Resources

Look under "state" in your phone book for public agencies which may be able to provide information and/or assistance. Start with the state departments of health and education. State agencies may include:

 

Australian Resources

Action Group for Children with a Disability
19B William Street, Richmond, Victoria, Australia 3121, Telephone 9427-0827

The Action Group for Children with a Disability is an organization run by parents which focuses on family needs. They provide information about services and benefits, as well as contacts for support.

 

Disability Information & Resource Center
194 Gilles Street, Adelaide, South Austrailia 5000, Telephone 1-800-182-179

The Disability Information & Resource Center defines their role as "pointing people in the right direction" and "to end confusion concerning where to go for information about disability,to refer people to the most appropriate place to meet their needs." They provide information on benefits, mobility needs, building design, education, transportation, accessibility, and accommodation.

More information can be found online at http://www.dircsa.org.au.

 

Independent Living Centres of Australia
Independent Living Centres in Australia function much differently from independent living centers in the U.S. In Australia, ILCs provide information and advice on aids and equipment for people with disabilities. They maintain a database of 9,000 products and services for people with disabilities. In addition, 5,000 products can be viewed at each center in a normal living environment. There are seven such centres:

The ILC of Western Australia provides additional information online at http://www.ilc.com.au/.

 

Office of Disability /Disability Programs
Telephone 66 6 289 8348

Both the Office of Disability and Disability Programs are part of the Dpeartment of Health and Family Services. The Office of Disability coordinates disability policy across the commonwealth and is committed to encouraging equal access to services, facilities, and programs. The Disability Programs Office, which falls under the control of the Office of Disability, assists people with disabilities so that they can participate in community life as equal citizens. The Office facilitates access to sources of support. More information can be found online at http://www.acrod.org.au/.

 

Muscular Dystrophy Association of Australia
GPO Box 9932, Melbourne 3001 Australia, Telephone 1-800-800-284

FOP is one of the disorders covered by the MDA. They may be able to help you find related resources.

 

TADVIC Cooperative Ltd.
Technological Aid to the Disabled, 79 Burkhurst Street, P.O. Box 88, South Melbourne, Victoria 3205, Tele: (03) 9254 5625

TADVIC is an organization made up of volunteers who make or adapt special equipment when nothing can be found to meet a person's existing needs. More information can be found online at http://www.tadvic.asn.au/.

 

Canadian Resources

Active Living Alliance for Canadians with a Disability
1600 James Naismith Drive, Gloucester, Ontario, Phone 1-800-771-0663

The Active Living Alliance promote independent living for people who have disabilities. More information can be found online at http://www.activeliving.ca.

 

Canadian Abilities Foundation
489 College Street, Suite 501, Toronto, Ontario, Canada M6G 1A5, Phone 416-923-1885

The Canadian Abilities Foundation publishes a magazine called ABILITIES and provides information for families dealing with disability issues.

 

Disabled Peoples' International
101-7 Evergreen Place, Winnepeg, Manitoba R3L 2T3, Phone (204) 287-8010

DPI has eight regional offices and deals with advocacy issues. More information can be found online at http://www.crin.org/organisations/viewOrg.asp?ID=1387.

 

North Shore Disability Resource Center Association
3158 Mountain Highway, Vancouver, BC V7K 2H5, Phone (604) 985-5371.

 

European Resources
 

European Network on Independent Living

ENIL promotes independent living, a philosophy and a movement that works to provide equal opportunity, self-respect, and self-determination for people with disabilities.More information can be found online at http://www.independentliving.org/index.html.

 

Full Rulle
Stiftelsen Full Rulle, Sandakerveien 56a, P.O. Box 4331 Torshaw, N-0402 Oslo, Norway,
Tel: +471 22 15 49 30

Full Rulle is a small foundation in Oslo, Norway that works on disability awareness. They will soon start publishing Norways Lifestyle Magazine for People with Disabilities.

 

HELIOS II
Handicapped People in the European Community Living Independently in an Open Society.
Werminval Winterling 3-7 - 2170 Merksem - Antwerpen, Telephone 03-646 94 64 (61)

HELIOS II tries to ensure that disability is not a hindrance to participation in society, whether in education, employment, culturally, etc.More information can be found online at http://www.werminval.be/helios/helios.html

 

New Zealand Resources

Disability Information Service
314 Worcester Street, P.O. Box 32-074, Christchurch, NZ, Telephone: (03) 366-6189
online: http://canterbury.cyberplace.org.nz/community/dis.html

Information on employment, equipment, mobility, building access and design. Publishes a newsletter.

 

Internet Listing of Disability Resources in New Zealand
http://www.weka.net.nz

 

New Zealand CCS
online: http://www.ccs.org.nz/

Offers support, advice, training, and services to people with all types of physical disability. Assistance with every day living, education, employment, etc. 

Resources in the United Kingdom 

Department of Security (DSS)
An occupational therapist at your local Department of Security (DSS) should be able to assist you with such tasks as making homes accessible, getting wheelchairs, getting medical equipment, etc.

 

The Disabled Living Foundation
380-384 Harrow Road, London W9 2H U, Telephone +44 171 289 6111

The Disabled Living Foundation maintains a comprehensive database of equipment for people with disabilities (wheelchairs, beds, lifts, etc.). The list is available on computer disk or CD-ROM. The list is also provided online at www.atlas.co.uk/dlf.

 

Disabled Resource Team
Some areas of the UK also have a Disabled Resource Team (affiliated with NHS). The DRT has many contacts and information on available equipment (ie. the most suitable armchair or bed, kitchen/bath equipment, etc.). They have a budget to provide equipment, but their main task is to find out which piece of equipment would be most suitable for a particular person. This includes work as well as home. DRTs are funded by the National Health Service and thus can provide access to public funds.

For more information, contact:
Val Cornish
Disabled Resource Team
Barwise, Walton Hospital
Whitecoats Lane
Chesterfield, S40 3HN
Telephone: 0124 627 7271 [ext 2875]

 

Integrated Living Team
The Integrated Living Team is similar in function to the Disabled Resource Team.

For more information, contact:
Sue Kingston
Integrated Living Team
Corbett Hospital
Vicarage Road
Stourbridge, DY8 4JB
Telephone: 01384 244654

 

Muscular Dystrophy Association
Contact your local chapter of the MDA to see if they can assist you or help you find related resources.

 

The National Health Service (NHS)
The National Health Service (NHS) recently approved covering the costs of powered wheelchairs for the severely disabled. NHS also recently insituted a voucher system to give wheelchair users more choices and financial aid if they choose to buy a wheelchair provided by the private sector.

 

Other Resources

Wheels for the World
Wheels for the World is operated by JAF Minstries. They collect, refurbish, and distribute wheelchairs to people with disabilities in developing countries where it is difficult to obtain mobility equipment. In 1997, they delivered wheelchairs to Africa, Eastern Europe, and South America. For addition information, call (818) 707-5664.

 

Travel Resources

There are a number of travel agencies that specialize in travel for people with disabilities. In addition, there are numerous books available on the subject. The IFOPA Resource Center also has information on the special needs of traveling with an electric wheelchair.

Accessible Journeys
1-800-846-4537, Online: http://www.disabilitytravel.com
Travel agency specializing in disabilities

Accessible Travel USA: A Directory for People with Disabilities
Candida H. Cronona. Creative Hospitality Concepts, 1994. $19.95.

Air Carrier Access Act: Make It Work for You.
Publication of the Paralyzed Veterans of America, call (202) USA-1300

The Challenged Traveler's Guide to Las Vegas
Douglas F. Connor. D.E. Publications, 2756 N. Green Valley Pkwy, Suite 476, Henderson, NV 89014, Telephone (702) 456-7219. $10 + shipping.

Directions Unlimited
720 N. Bedford Rd, Bedford Hills, NY 10507, Telephone 1-800-533-5343
Travel agency specializing in disabilities

Flying Wheels Travel
Box 382, Owatonna, MN 55060, Telephone 1-800-535-6790
Travel agency specializing in disabilities

Handicapped in Walt Disney World.
Peter Smith. South Park Publishing Group. 4041 W. Wheatland Road, Suite 156-359, Dallas, TX 75237-9991. (214) 296-5657, Can also order through Access on Living magazine 1-800-787-8444.

Haseltine Systems Corp.
1-888-445-8751, Online: http://www.haseltine.com. Designed a product that is especially meant for airport transfer of large power wheelchairs (in order to prevent damage which can occur during shipping).

Mobility International
Telephone (541) 343-1284
"Over the Rainbow Newsletter," information sheets on many parts of the world

New Horizons for the Air Traveler with a Disability
Free publication of the Department of Transportation, call (202) 366-2220

NICAN-National Information Communication Awareness Network
P.O. Box 407, Curtain ACT, Australia 2605, Telephone 06 285 3713
Opportunities in Australia and worldwide

Travel Agents International
Telephone (770) 664-2236, Online: http://www.travelagency.com
Travel agency specializing in disabilities

Travelin' Talk
P.O. Box 3534, Clarksville, TN 37047, Telephone (615) 552-6670
International network of people with disabilities who share information about travel experiences, accessibility, etc., newsletter

Wheelchair Getaways
1-800-642-2042
Rent wheelchair accessible vans

Wheels Up
1-800-38 Wheels, Online: http://www.wheelsup.com
Travel agency specializing in disabilities, newsletter and informative web site

Wilderness on Wheels
(303) 988-2212
camping in the Rockies, mile-long wheelchair accessible board walk starts at trout stream and winds through flowering meadows and rugged rock formations, available April through October by reservation only, donations accepted in lieu of entrance fees

Very Special Traveler
(410) 635-2881
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