One of the most important issues to individuals with disabilities is access to health care. The following letter was signed by members of the MDA National Task Force Steering Committee, individually addressed and mailed on July 11, 1997 to:

RE: RECOMMENDATIONS FOR IMPORTANT
HEALTH CARE REFORMS

Dear:

The Muscular Dystrophy Association's National Task Force on Public Awareness is a group of adults affected by neuromuscular diseases who serve as volunteer consultants to advise MDA about issues of importance to people served by the Association. Access to health care is one of the most important needs of persons with neuromuscular disease. Therefore, we strongly support the following proposed reforms to our nation's health care system.

1. Medical Insurance for the Nation's Children

Most of the 40 neuromuscular diseases covered by MDA programs begin in childhood and have a tremendous impact on the affected children and their entire families. MDA is the largest non-governmental agency supporting research seeking cures and effective treatments for these diseases as well as offering selected health care services such as diagnosis and financial assistance with the purchase of wheelchairs and leg braces. However, the basic health care needs of individuals with neuromuscular diseases far exceed the resources of an agency that depends entirely on voluntary contributions. For children with disabilities, comprehensive health care is often a prerequisite to their independence and ability to enjoy the basic rights guaranteed under the Americans with Disabilities Act and the Individuals with Disabilities Education Act. Congressional figures show that 10.5 million children lack health coverage. Three million of these children come from families eligible for Medicaid but who have never been enrolled. Another 7 million come from families too well off for Medicaid but too poor to buy private insurance. Research by the Families USA Foundation shows that fully half of American children with family incomes just under the median (incomes between $17,280 and $28,800 in 1996) were uninsured for all or some part of the years 1995 and 1996. A family without insurance whose child develops a neuromuscular disease is likely to face overwhelming costs. We support steps to ensure that all America's children receive comprehensive health care.

2. Reforms to Medicare Supplemental (Medigap) Policies

We strongly support reforms to Medicare Supplemental (Medigap) policies which, (a) guarantee issuance without preexisting condition exclusions for continuously covered individuals, (b) prohibit preexisting condition exclusions for the six-month open enrollment period and, most importantly, (c) extend the initial open enrollment period to non-elderly Medicare beneficiaries. Guaranteeing access to Medigap plan options to the almost five million Medicare beneficiaries with disabilities under age 65 is long overdue. These Americans, including many individuals served by MDA, have quit work and are on Medicare because of health problems. Medigap policies will allow them to purchase more comprehensive coverage, thereby giving them the services they need and protecting their assets from soaring health care costs.

3. Consumer Protections for Individuals Buying Managed Care Insurance Plans

Today, 75% of privately insured Americans are enrolled in managed care, and Medicare and Medicaid are moving in that direction. Often, fee for service health insurance is no longer an option, severely limiting the health insurance choices of consumers. Implementation of the following consumer protections will help to ensure that individuals with neuromuscular diseases receive quality health care from their managed care insurance plans.

a. Access to specialty care and use of specialists to coordinate enrollees' primary and specialty care. As neuromuscular disease progresses, affected individuals become increasingly reliant on specialist doctors such as neurologists or pulmonologists for their care. Immediate access to these specialists can be essential to the maintenance of quality health care.

b. Ban on interference with communications between doctor and patient. Increasingly today, patients must be their own advocates for the health care they need and they must choose among alternate treatments. Access to medical information is essential. Doctors must not be prohibited from discussing with their patients treatments that may not be covered by the managed care plan. The doctor-patient relationship is based on trust which is breached if the doctor does not mention a treatment he or she thinks might be helpful because the health plan precludes it.

c. Coverage for durable medical equipment necessary to maintain independence. Durable medical equipment, such as motorized wheelchairs, is often the key to independence and better health for individuals with physical disabilities. Managed care plans often cover only the most basic manual wheelchairs or other medical equipment. This places a heavy financial burden on individuals, often denying them access to the assistive devices they need.

d. Grievance procedures. Managed care plans need to have a complaint and appeal process through which enrollees may appeal adverse determinations. Denial of access to a specialist, refusal to provide covered durable medical equipment or drugs would be subject to appeal.

e. Grants to states to establish and maintain health insurance ombudsmen. As the number of managed care plans expands, the choice between managed care plans and fee for service plans becomes increasingly complicated. A state agency overseeing these plans, advising consumers on the choices they have and advocating for them when there is a conflict with the health insurance providers, would be very helpful.

4. Amendment of Title XIX of the Social Security Act to Provide for Coverage of Community Attendance Services under the Medicaid Program

We strongly believe that individuals entitled to nursing home or other institutional services under Medicaid should be given as much choice as possible as to where and how they receive attendant care services. There is no medical reason why these services have to be provided in an institutional setting. This freedom to choose, we believe, will lead to better care for the individual and result in healthy competition between the nursing home industry and home health care which will, hopefully, increase the standard of care. Giving many of the two million Americans currently residing in nursing homes the choice to live outside a nursing home is an important step toward the long delayed integration of the individuals with disabilities into the mainstream community.

5. Continued Federal Funding for Biomedical Research

In light of the recent significant advances toward gene therapy for a number of genetic diseases, we want to ensure that biomedical research does not become a casualty in the drive to reduce health care costs.

As individuals served by MDA, we are very fortunate to be able to turn to MDA for direct services and the hope offered by the Association's long-term investment in research seeking cures or effective treatments for 40 neuromuscular diseases, many of which are life-threatening. The fact that we benefit from MDA's programs (see enclosed brochure) which are made possible by the American public's generosity, while many others with disabilities do not have access to such benefits, points out yet another of the inequities in our current health care system. Enactment of the health care reforms outlined above will help to reduce the inequities in the current system and will enhance the quality of the medical care of millions of Americans.

Very truly yours,

The Members of the Steering Committee of the
MDA National Task Force on Public Awareness

/s William W. Altaffer, Esq.
/s Jan Blaustone
/s Shelley C. Obrand
/s Chris Rosa