"Every ounce of energy I have is being consumed by being here today, but I would much rather be here than confined to home waiting to die. Please give me and thousands like me the opportunity to forget about our disabilities and enjoy life as you have the freedom to do."
|David Jayne receives home health care from Medicare. Photo by Atlanta Journal-Constitution
These are the words of David Jayne of Rex, Ga., a man severely affected by ALS. His May 16 speech — conveyed by voice synthesizer to a Capitol Hill audience of members of Congress and disability advocates — asked for support of the Homebound Clarification Act of 2001 (H.R. 1490).
Jayne is a long-term survivor of ALS whose Medicare home health battle was instrumental in the measure's reintroduction in Congress. Endorsed by MDA, the measure would benefit 3.5 million Medicare recipients who receive home health care, including people with ALS and other neuromuscular disorders.
The act broadens the definition of "homebound" for people receiving Medicare-covered services in the home. Current law requires recipients to remain in their homes except for infrequent absences of generally short duration.
Attending the briefing on behalf of MDA were Anne Kennedy, health care services coordinator at the Association's Fairfax, Va., district office, and Luis Baez, a member of the MDA National Task Force on Public Awareness. Other speakers included the law's co-sponsors, Reps. Edward Markey, D-Mass., and Chris Smith, R-N.J.
Jayne became a visible symbol for the Homebound Clarification Act last year when he successfully challenged the policy of both his home health agency and Medicare.
A law known as BIPA passed late last year allows recipients of Medicare in-home benefits to attend religious services and adult day-care programs, in addition to going out for medical services. H.R. 1490 would still require that recipients have a "normal inability to leave home." However, the frequency, purpose and duration of excursions wouldn't be counted against eligibility for Medicare's in-home services.
"Today new technology and positive attitudes toward people with disabilities, which are embodied in the Americans with Disabilities Act and promoted by MDA, help make it possible for thousands of individuals with disabilities to have complete access to community life," read a recent statement of support from MDA's national task force.
The Homebound Clarification Act is endorsed by some 30 disability organizations, including MDA. By early June, the measure had 46 congressional co-sponsors, and backers are seeking more.
You can support the bill by writing or calling your congressional representative. Contact information can be found at www.house.gov.
For updates on the legislation's progress, visit the Web site of the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness (NCAHB).