Money — it's a big issue when you're coping with a neuromuscular disease. The search for funds to cover needed equipment, home modifications, drugs, treatments and other expenses, and the fight to get benefits from insurance companies and government agencies can be as stressful as the effects of the disease itself.
In this issue, Quest attempts to provide a map of some of the traps, detours and dead ends that make up the tortuous Money Trail — as well as some of the rest stops and satisfactory destinations to which it can lead.
"Learning to Squawk" offers strategies for making your voice heard and getting what you want. "Keeping Your Insurance Coverage on Track" looks at solutions to some common insurance hassles, including those that may arise with Social Security, Medicare and private insurance. "Where Is All the Money?" tells how several individuals creatively found funds to cover their needs.
"From Where I Sit" presents a personal reflection by Kimberly Sullivan, parent of a son with spinal muscular atrophy, about "The Middle-Class Trap" — a condition she describes as making too much money to get assistance to buy medical necessities, yet not making enough money to pay for them yourself, without sacrifice. It's a familiar story for many.
Tying it all together is an extensive list of resources. There you'll find further roads to take and stops to make — including MDA — that will give you information and assistance. We hope the information in this package will lead to a happy ending to your trip down the Money Trail.
Muscular Dystrophy Association, www.mda.org, (800) 572-1717
MDA helps with the repair of wheelchairs, scooters and leg braces, as well as repairs to these items. Help also is available for 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, MDA's clinic program offers medical management from neuromuscular disease experts at low or no cost.
This list will direct you to official information on the benefits available through federal and state agencies. These sites can be difficult to navigate.
Official site, www.medicare.gov, (800) 633-4227 [(800) MEDICARE]
"Medicare and You," (updated annually) www.medicare.gov/publications/pubs/pdf/10050.pdf
Medicare Appeals and Grievances (online publication), www.medicare.gov/basics/appeals.asp
Medicare Helpful Contacts page, www.medicare.gov/Contacts/default.aspx
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.
State Children's Health Insurance Program (SCHIP), www.cms.gov/home/chip.asp
State Health Insurance Assistance Program (SHIP), www.cms.gov/Partnerships/10_SHIPS.asp
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.
Center for Medicare Advocacy, www.medicareadvocacy.org, (860) 456-7790
The center provides Medicare education, advocacy and legal assistance. The center publishes numerous booklets on the basics of various Medicare program aspects, as well as guides on filing appeals.
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, (800) 333-4114
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."
The Arc, www.thearc.org, (800) 433-5255, 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.
Disability Advocates of America, www.disability-advocate.com
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, (888) 835-5669
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, (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, (816) 783-8500
This site features links and contact information for state Departments of Insurance.
National Disability Rights Network, 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
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/Pages/StateSpecificInfo.aspx, (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.
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.
Foundation Center, http://foundationcenter.org/
Joni and Friends International Disability Center, 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.
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, http://resna.org/, (703) 524-6686
RESNA 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.
Disability Resources, www.disabilityresources.org
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 MDA's 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.
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, President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry
"A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan," 2005 Update
www.kff.org/consumerguide/7350.cfm, Henry J. Kaiser Family Foundation, (650) 854-9400
"Funding Guide for Standing Technology", www.easystand.com/funding/index.cfm, Altimate Medical's online guide about securing payment for standers and other assistive equipment., (877) 844-1172
Financial Aid for the Disabled and Their Families, 2010-2012, by Gail A. Schlachter and R. David Weber, 480 pages, 2010, $40. Reference Service Press, (916) 939-9620, www.rspfunding.com/index.html.
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: A Guide for People with Chronic Disease or Disability, 2nd ed., by Dorothy E. Northrop, Stephen Cooper and Kimberly Calder, 215 pages, 2006, $26.95. 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 don't know where to begin.
How to Solve All Your Money Problems Forever, by Victor Boc, 1997. Perigee Books. Ask at local bookstores.
Ferguson Career Resource Guide for People with Disabilities, 3rd ed., 1024 pages, 2006, $150. Ferguson Publishing, (800) 322-8755, www.infobasepublishing.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.
Editor's note: The resources list was revised November 2010.