November 10, 1999

ON INDEPENDENCE, AWARENESS AND LEADERSHIP

MDA's primary area of responsibility has always resided, and will continue to reside, in the implementation of its life-enhancing programs in research and services that have a direct benefit on the lives of children and adults with progressive neuromuscular diseases.

And yet MDA recognizes a responsibility to remain knowledgeable on a variety of issues that are of concern to people with disabilities and, in special instances, to speak out when we feel that an issue may have particular relevance to the well-being of those MDA serves.

To that end, in 1992, MDA established the National Task Force on Public Awareness. This nationwide group of volunteers consists of adults who are leaders in their communities and are affected by one of the 40 neuromuscular diseases in MDA's program. They represent a wide spectrum of experience in such areas of endeavor as education, business, communications, law and social services.

"Independence, Awareness, Leadership" have always been the watchwords of this group as they've addressed a number of significant issues of concern to those with disabilities.

The National Task Force has, for instance, repeatedly expressed its support of the ALS Treatment and Assistance Act, a bill that would amend the Social Security Act to waive the 24-month waiting period for Medicare coverage for individuals with ALS.

Task force letters strongly advocating the adoption of this bill as a humanitarian gesture to help people with ALS were sent to members of the House Ways and Means Committee, the House Commerce Committee, the Subcommittee on Health and Environment, and the National Council on Disability, as well as to President Clinton. The fate of this crucially important bill is still pending in Congress.

Recently, Task Force members saw a tangible result in an issue involving the amount of money airlines are required to pay to compensate passengers for loss or damage to wheelchairs and other assistive devices. Until recently, the compensation airlines were required to pay was limited to a cap applied to all baggage of $2,500. The problem, as anyone using a power wheelchair, ventilator or other device can tell you, is that a mere $2,500 doesn't even begin to address the costs of replacing this kind of equipment.

An eloquent letter from the Task Force's Steering Committee on May 7, which was one of only a few dozen communications received by the Department of Transportation (DOT) on this issue, yielded positive results. The DOT ruled that, as of Sept. 1, wheelchairs and other assistive devices should be viewed differently from baggage; that is, airlines will now be responsible for actual repair costs, or, in the case of a chair or device that is lost or damaged so badly that it must be replaced, compensation for the original purchase price of the chair or device.

In addition to this encouraging outcome, the Task Force has communicated its stands on such matters as a national health care plan, the Americans with Disabilities Act, Medicaid funding, personal assistance services, the Roosevelt Memorial, the Charitable Giving Relief Act and the Family Caregivers Enumeration Act. The Task Force has also proved invaluable in helping inform the public about MDA research and other aspects of the Association's program.

Task Force members have appeared on network and syndicated TV programs, including ABC's "Prime Time Live," CNN's "World News," NBC's "Today" Show, "Sally Jessy Raphael" and "Entertainment Tonight." They've been interviewed by national, regional and local print and radio media.

Following the national task force's example, local task forces have been formed in many of MDA's 155 chapters across the country.

Currently, MDA's National Task Force on Public Awareness consists of the following distinguished members:

	William W. Altaffer, Esq. Tucson, Ariz.		Alexandria Peck Berger, Ph.D. Portsmouth, Va.
	Jan Blaustone Nashville, Tenn.		Marilyn J. Cooper Northridge, Calif.
	Lori Generes Houston		Amy Dunaway-Haney Dayton, Ohio
	Nicholas A. Johnson Waltham, Mass.		Michael Neufeldt New Berlin, Wis.
	Shelley C. Obrand Fort Lauderdale, Fla.		Chris Rosa Flushing, N.Y.
	Matthew Schuman Greeley, Colo.		David A. Sheffield, Esq. Silsbee, Texas

MDA applauds the work of its National Task Force on Public Awareness and will continue to rely upon its members for the insight, eloquence and understanding they so adeptly provide to our Association on the complex issues facing people with disabilities today.

With every best wish . . .

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