National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness sign now

A Petition to President Bush and Congress In Support of David Jayne and the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness

Dear President Bush and Respected Members of Congress,

My name is David Jayne. I am 39 and have had a 13-year battle with Lou Gehrig's disease, otherwise known as Amyotrophic Lateral Sclerosis (ALS), a degenerative condition that causes my muscles to atrophy. I live in the community of Rex, 15 miles south of downtown Atlanta, Georgia. In early 1998, I had a tube inserted in my throat and was hooked to a portable ventilator. I use a computerized speech processor to speak. I receive my nutrition via a tube permanently inserted in my stomach. My mobility is limited to the ability to twitch three fingers. These medical conditions create an ongoing need for skilled nursing. Admittedly, the disease I face is brutal and harsh. However, I do not face this disease alone. I love life, my church, my friends, my community and my family. With the adoption of the ADA, which your father so heroically signed into law, it has opened many doors once thought permanently closed to the disabled. Along with these new laws, new modern technologies, such as portable ventilators, have created even more unparalled opportunities for me to be an active and contributing part of my community. Today, however, it is not ALS that stands in my way, it is a harsh Medicare policy.

My Medicare home health care provider had been sending an attendant to my home for two hours a day, seven days a week since 1997 to help me get out of bed and take a shower. Last year my provider tried to terminate my service after I went to the funeral of a friend who had died from ALS. I skirted that challenge but it points to the harsh impact of Medicares homebound rule. Recently, however, because I gave inspirational speeches at my church and to a class of physical therapy students, participated in an ALS "fun run," and traveled with a college friend on an overnight trip to watch the University of Georgia -- University of Florida football game, my Medicare home health care benefits were cut off. The provider was following a Medicare policy that no longer considers me "homebound" and thus eligible for these vital medical benefits. My Medicare benefits have since been restored, but at the cost of my freedom. I must now remain confined to my home to maintain these benefits.

I ask you now to help improve this harsh governmental policy which virtually has made me become a prisoner of my home. I have learned of other similarly situated people with significant chronic illness across America. I value these Americans. I care about the quality of their lives. Under Medicare rules, a person is considered homebound when "leaving home is a major effort" and "When you leave home, it must be infrequent, for a short time or to get medical care".

I ask that we amend this policy. The amended policy should rest on medical standards taking into consideration the amount of effort it takes for a person to leave the home. The frequency and duration criteria as they presently exist are wholly arbitrary. If persons with significant chronic illness are able to acquire the technological and personal resources necessary to leave their home, they should be granted the freedom to do so and still receive the medical and personal care they need and deserve while living at home. If a fair policy cannot be achieved due to financial constraints, let us work positively and creatively for better solutions.

Sincerely,

David Jayne, Rex Georgia

The National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness

Please read the mission statement of my National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness. Please join our coalition by endorsing the petition to President Bush and Congress set forth below.

Please Sign Our Petition:


I hereby pledge my support to David Jayne and the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness. I hereby call upon President Bush and Congress to improve the homebound policy by enacting new legislation which assures Medicare beneficiaries with significant chronic illness and ongoing skilled medical needs, who need maximum or total assistance with their activities of daily living, will not lose their Medicare home care benefits if their skilled medical need remains unchanged and if they so choose to go on a vacation, volunteer in their community, go to a funeral, go to school, or otherwise try to participate in American Society despite their condition.

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Pansy ZhangBy:
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President Bush and Congress

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