Muscular Dystrophy Association www.mda.org
(800) 572-1717
MDA helps with the purchase of wheelchairs, scooters, and leg braces,
as well as repairs to these items. Help also is available for buying augmentative
communication devices, and most MDA offices have a loan closet program
providing items such as walkers, shower chairs, hydraulic lifts and hospital
beds. In addition, MDAs clinic program offers medical management from
neuromuscular disease experts at low or no cost.
Government Benefits
This list will direct you to official information on the benefits
available through federal and state agencies. These sites can be difficult
to navigate.
Medicare Medicares official site www.medicare.gov
(800) 633-4227 [(800) MEDICARE]
Then dial "0" for general customer service representative, dial
"4" to order publications or follow other options as given.
Other Government Programs
Social Security Administration (SSA) www.socialsecurity.gov
(800) 772-1213
For a listing of state telephone numbers you can call
for help with any of the following programs, call (800) 633-4227, then
dial "0" and ask for state telephone listings or customer service.
You can also find Web site and e-mail addresses for your state at the
sites listed below.
Advocacy
The following resources provide starting points when you have a complaint
or would like to file an appeal. Unless indicated otherwise, all are nonprofit,
nongovernmental organizations.
Medicare
Center for Medicare Advocacy www.medicareadvocacy.org
(860) 456-7790
The center provides Medicare education, advocacy and legal assistance.
The center publishes "Medicare Basics 2003: What Every Family Needs
to Know" for $10 per copy, plus $1.50 shipping & handling.
Medicare MD www.medicare.com
This private site (not to be confused with medicare.gov) provides up-to-date
information and help with finding answers or services related to obtaining
Medicare coverage
Medicare Rights Center www.medicarerights.org
(212) 869-3850
This organization offers educational publications, training programs,
comprehensive information about Medicare options and rights, and publishes
the booklet "Your Appeal Rights: Getting the Most from Medicare."
General Advocacy Resources
The Arc www.thearc.org
(301) 565-3842, or check local phone listings
This nonprofit focuses on the needs of people with mental retardation,
but local Arc chapters are valuable sources of information about advocacy
training and programs for people with all disabilities.
Chambers Benefits Consulting www.helpwithbenefits.com
(888) 739-2595 toll free
Jacques Chambers, benefits consultant and counselor, operates a private
business. (See "Doctors Can
Help.")
Disability Advocates of America www.disability-advocate.com
(866) 215-5406 toll free
Mick Mickler
This nationwide organization has a good success rate helping claimants
denied by Social Security get their benefits. (See "Social
Security Disability Insurance.")
Family Voices www.familyvoices.org
(505) 872-4774
Family Voices assists families of children with special health care needs
and has contacts in every state.
National Association of Disability Representatives (NADR) www.nadr.org/members.html
(800) 747-6131
NADR members help claimants seeking Social Security benefits to solve
overpayment or underpayment problems and to understand SSA processes and
procedures.
National Association of Insurance Commissioners (NAIC) www.naic.org/state_contacts/sid_websites.htm#
(816) 842-3600
This site features links and contact information for state Departments
of Insurance.
National Association of Protection and Advocacy Systems www.napas.org
(202) 408-9514
The Protection and Advocacy (P&A) System and Client Assistance Program
(CAP) are congressionally mandated, legally based disability rights agencies
in every state. P&A agencies provide legal representation and other
advocacy services to people with disabilities. CAP agencies provide vocational
rehabilitation services information and assistance.
National Health Law Program
(NHeLP) www.healthlaw.org
(310) 204-6010
NHeLP is a national public interest law firm that seeks to improve health
care for Americas working and unemployed poor, minorities, the elderly
and people with disabilities. Many publications are listed.
National Information Center for Children and Youth with Disabilities (NICHCY) www.nichcy.org/states.htm
(800) 695-0285
The handy "State Resources" page will help you locate organizations
and agencies within your state.
Patient Advocate Foundation www.patientadvocate.org
(800) 532-5274
This organization can serve as an active liaison between a consumer and
his or her insurer, employer or creditors.
Funding Resources
Assistance Programs
First Hand Foundation www.firsthandfoundation.org
(816) 201-1569
Established by Cerner Corp., First Hand helps families of children with
health problems through grants for medical expenses, durable medical equipment,
van lifts, and living expenses when traveling for medical care.
Joni and Friends Christian Fund for the Disabled www.joniandfriends.org
(818) 707-5664
Funding is offered for assistive equipment and special education. Requests
must be channeled through a Christian church or area Joni and Friends
coordinator.
Rebuilding Together www.rebuildingtogether.org
(800) 4-REHAB9
This free home repair and modification program, run by volunteers, assists
people with disabilities and others. The program can build ramps, install
grab bars, modify bathrooms, widen doorways or perform general repair.
Apply through a local contact, or ask for a referral through a church
or community organization. Assistive Technology
Assistive Technology
Disabled Dealer Magazine www.disableddealer.com
(888) 521-8778
This "shopper" magazine advertises new and used assistive equipment,
including vans. Six publications cover about one-third of the country.
RESNA Technical Assistance Project www.resna.org/taproject/about/about.html
(703) 524-6686
The Technical Assistance Project supports grantees under the federal Assistive
Technology Act in providing assistive technology to people with disabilities.
This site lists state contacts, which have information about loans and
grants.
General Funding
Information
Disability Resources www.disabilityresources.org
(631) 585-0290
This small volunteer group monitors hundreds of sources and maintains
an extensive database of hard-to-find information on resources for independent
living, including funding.
Independent Living Centers (ILC) www.ilru.org, or check local phone listings
ILCs often can provide local information about financial programs, advocates,
housing, transportation, education, recreation, peer counseling and support
groups.
Information and Referral Service (I&R)
Check the community pages of
the phone book to see if your community offers an I&R program to connect
people in need with appropriate organizations and agencies.
MDA Support Groups and Chats www.mda.org
Call your local office or (800) 572-1717.
MDA support groups are rich sources of information about programs and
strategies from others facing similar challenges. You can also connect
with one of MDAs approximately 30 online chats.
Patient Advocate Foundation www.patientadvocate.org
(800) 532-5274
The "Resources" section of this Web site offers the National
Resource Guide for Patients, a state-by-state directory of local financial
resources.
Publications
Online
These publications are readily available to download, read and print from
the Internet. Telephone to request printed copies.
"Consumer Bill of Rights and Responsibilities from Quality
First: Better Health Care for All Americans" www.hcqualitycommission.gov/final/append_a.html
Presidents Advisory Commission on Consumer Protection and Quality in
the Health Care Industry
(800) 358-9295
"A Consumer Guide to Handling Disputes with Your Employer
or Private Health Plan," 2003 Update www.kff.org/consumerguide
Henry J. Kaiser Family Foundation
(650) 854-9400
"Family Voices Leadership Handbook" www.familyvoices.org/handbook
Family Voices
(505) 872-4774
This health care policy and advocacy guide for families and friends of
children and youth with special health care needs was created by families
for families.
"Funding Guide for Standing Technology" www.easystand.com/funding.aspx
Altimate Medicals booklet about securing payment for standers and other
assistive equipment.
(877) 844-1172
"Health Services Questions and Answers" www.healthlaw.org/pubs/200112acluguide.html
National Health Law Program
(310) 204-6010
This publication presents major insurance programs and important laws
designed to help people receive care.
Print Publications Financial Aid for the Disabled and Their Families, 2002-2004, by Gail A. Schlachter and R. David Weber, 495 pages, 2002, $40. Reference
Service Press, (916) 939-9620, www.rspfunding.com.
This book contains information about scholarships, fellowships, loans,
grants and internships for individuals with disabilities. Both Library
Journal and the New York Public Library chose this directory as one of
the "best reference books of the year." Look for it at your
local library.
Health Insurance Resources: Options for People With a Chronic
Disease or Disability, by Dorothy E. Northrop and Stephen
Cooper, 208 pages, 2003, $24.95. Demos Medical Publishing, (800) 532-8663, www.demosmedpub.com.
This book contains information about a variety of options helpful to those
who are uninsured, underinsured or who have questions about insurance
and dont know where to begin.
How to Solve All Your Money Problems Forever, by
Victor Boc, 1978. Perigee Books, (800) 788-6262. Ask at local bookstores.
Resources for People with Disabilities: A National Directory,
2nd ed., 896 pages, 2001, $89.95. Ferguson Publishing, (800) 306-9941, www.fergpubco.com.
This two-volume set is filled with information to help readers realize
educational and career goals, including funding sources for durable medical
equipment. Look for it at your local library.
Quest www.mda.org/publications/Quest/q_back_09.html
Past Quest stories on financial topics contain many helpful resources,
though some may no longer be current. Quest is also available through
local MDA offices.
