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Consortium for Citizens with Disabilities Health Task Force Co-Chairs

Kathy McGinley (202) 408-9514
Julie Ward (301) 459-3700
Peter Thomas (202) 466-6550
Bob Griss (202) 842-4408
Brian Rasmussen (202) 776-0406

July 18, 2002

The Honorable Thomas Daschle
Senate Majority Leader
C/o Jane Loewenson
United States Senate
509 Hart Senate Office Building
Washington, D.C. 20515

RE: Support for Modifications to the Medicare "Homebound" Requirement

Dear Senator Daschle:

The undersigned members of the Consortium for Citizens with Disabilities Health Task Force are writing to urge you to support a much needed change in Medicare home health policy that currently makes many people with disabilities prisoners in their own homes. Any Medicare reform bill that passes the Senate this year should modify the "homebound" requirement, the provision that restricts Medicare beneficiaries to their homes in order to qualify for home health care services.

Over seventeen thousand Americans have signed an Internet petition spearheaded by David Jayne to change Medicare's harsh and restrictive homebound policy. David Jayne has had a 13-year battle with amyotrophic lateral sclerosis (ALS). He uses a portable ventilator to breathe and a speech processor to speak. We are writing to assist him and many others to regain their freedom and dignity.

For thousands who have paid into Medicare, home health services often provide a much needed alternative to costly and unnecessary institutionalization. But the receipt of these services also extracts a price that no law abiding American should ever have to pay. It forces Medicare beneficiaries to give up their most precious freedom by making them prisoners in their own homes. As you know, this is because of the Medicare homebound rule. At the time it was put in place, the homebound policy probably was a fair and efficient way to administer the Medicare benefit. This is simply no longer the case.

We live in a far different day and time than when Medicare was first enacted and the homebound restriction took effect. The debate over prescription drug coverage under Medicare underscores the need to modernize and bring the program into alignment with the realities of 21st Century America. Similar reforms are badly needed on the homebound front as well. Passage of the ADA, advances in health care, technology and changing social mores all make it possible for people with significant disabilities to be a vibrant part of -- rather than kept apart from -- their families and communities than ever before.

Toward this end, we urge you to support the swift passage and implementation of home health modernization legislation introduced by Senator Susan Collins (R-ME), S. 2085. The Senate bill is co-sponsored by Senators Max Cleland (D-GA), Kit Bond (R-MO), and Tim Hutchison (R-AR). This legislation would base a homebound determination solely on the existing standard of whether leaving home requires considerable or taxing effort, eliminating the number or length of absences as criteria. Medicare home health criteria that focus on the frequency, duration and purposes for which beneficiaries may leave their homes are wholly arbitrary and should be eliminated.

David Jayne lost his Medicare benefits due in part to attending a football game. Going to a football game never changed anyone's underlying need for skilled medical care. Wheelchairs and portable ventilators now make it possible for people like David Jayne who have intensive medical needs to leave their homes on a regular basis. The Medicare program should not stand in their way of doing so.

We strongly urge the Senate to adopt S. 2085 when it debates its Medicare reform bill. Thank you in advance for your consideration.

Sincerely,

Advancing Independence: Modernizing Medicare & Medicaid
American Academy of Physical Medicine & Rehabilitation
American Association on Mental Retardation
American Association of People with Disabilities
American Congress of Community Supports and Employment Services
American Council for the Blind
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Occupational Therapy Association
American Therapeutic Recreation Association
Disability Rights Education and Defense Fund, Inc.
Easter Seals
Epilepsy Foundation
National Association for the Advancement of Orthotics and Prosthetics
National Association of Protection and Advocacy Systems
National Multiple Sclerosis Society
National Organization on Disability
Paralyzed Veterans of America
Rehabilitation Engineering and Assistive Technology Society of North America
The Arc of the United States
United Cerebral Palsy Association

cc: The Honorable Trent Lott (C/o John Mashburn)
The Honorable Max Baucus (C/o Pat Bousliman)
The Honorable Charles Grassley (C/o Linda Fishman)