December 5, 1995

President Bill Clinton
The White House
Washington, D.C. 20500

RE: Critical Medicaid Programs for People with Disabilities

Dear President Clinton:

We represent the Muscular Dystrophy Association's National Task Force on Public Awareness, 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.

While MDA enhances the quality of life of tens of thousands of Americans with neuromuscular diseases annually through health care and assistive technologies provided through its national network of 230 clinics and its path-breaking worldwide research program, many of these individuals are able to live independent lives largely because of the long-term services provided to them through Medicaid. For these individuals, Medicaid subsidizes the cost of assistive technologies and therapies, funds personal assistance services, transportation, respite care, home modifications, and provides other resources that enable children and adults with neuromuscular diseases to live empowered, autonomous lives. For many people with neuromuscular diseases, access to these services often means the difference between living rewarding, productive lives, fully integrated into their communities and being sequestered in costly institutions, segregated from the mainstream of American life.

Under the "block-grant" legislation proposed by Congress, Medicaid funding would be reduced by $182 billion over seven years. This legislation, which gives great autonomy to states in the establishment of criteria and standards for eligibility and service, provides no assurances that existing Medicaid programs critical to the independence of many people with neuromuscular diseases will be continued at the state level.

Given this understanding, we were heartened to learn that you and Congress have agreed in principle that, in the course of balancing the federal budget, adequate funding must be provided for Medicaid programs. The members of MDA's National Task Force on Public Awareness urge you to oppose any legislation that would limit access to these services and supports that are so crucial to the quality of life and independence of more than 6 million Americans with disabilities who benefit from these Medicaid programs.

Thank you for your careful consideration of this matter and for your enduring commitment to fostering equal access and opportunity for all Americans.

Sincerely,

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

/s William W. Altaffer, Esq.
/s Lori Hinderer
/s Shelley C. Obrand
/s Chris Rosa
/s David A. Sheffield, Esq.