One of the most important services available to individuals with disabilities are those regarding personal assistance. The following letter was signed by members of the MDA National Task Force Steering committee, individually addressed and mailed on July 1, 1996, to:

Senator Bill Frist
Senator Trent Lott
Senator Thomas Daschle
Representative Richard K. Armey
Representative Newt Gingrich
Representative Richard A. Gephardt

RE: Community-Based Personal Assistance Policy

Dear:

We represent the Muscular Dystrophy Association's National Task Force on Public Awareness, a group of adults affected by neuromuscular diseases who advise MDA on issues of importance to those served by the Association. We are writing to demonstrate our support for the establishment of a national program of community-based personal assistance services for people with disabilities. Such a program would greatly enhance the quality of life and independence of tens of thousands of people with disabilities imposed by neuromuscular diseases.

Our current system of providing for the personal care and independence needs of people with disabilities leaves these individuals and their families with few real choices. This system places people with disabilities in nursing homes and large institutions, too often denying them access to community-based personal assistance services. The result is that Americans with disabilities are often forced to live in extremely costly institutions, segregated from the mainstream of American life, rather than given the ability to fulfill the promise of the Americans with Disabilities Act by aspiring to rewarding, productive lives, fully integrated into their communities. Americans with disabilities caused by neuromuscular diseases and their families would overwhelmingly choose to have personal assistance services provided in their own homes, not in nursing homes or other institutions. It has been clearly shown that the cost of nursing home care is much higher than the cost of personal assistance services in the home. In order to help contain escalating health care costs and, most importantly, to allow all Americans to live meaningful, productive lives in the mainstream of their communities, we support the establishment of a national program of consumer-controlled, community-based personal assistance services for people with disabilities, regardless of age or "pre-existing condition."

We believe the following principles are essential elements of an effective national personal assistance policy:

1. Individuals with disabilities must have control over the selection and management of personal assistants.
    
2. Personal assistance services should be community-based rather than based in institutions.
    
3. Eligibility for these services should be assessed based upon functional needs rather than upon medical diagnosis, disability, or age.
    
4. These services must be available at home, work and in other locations of each consumer's choice.
    
5. While most people with disabilities do not require personal assistance services at all times, consumers should have access to these services 24 hours a day, seven days a week.
    
6. Personal assistants should be paid a living wage with benefits.
    
7. Personal assistance services should be based upon a consumer-directed Individual Services Plan.
    

We urge you to support a national personal assistance services policy that embodies these principles.

Thank you for your consideration of these issues of critical importance to people with disabilities.

Sincerely,

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

/s William. Altaffer, Esq.
/s Lori Hinderer
/s Shelley C. Obrand
/s Chris Rosa