GEORGIA MAN RECOGNIZED
FOR CHANGING MEDICARE RULES

TUCSON, Ariz. Dec. 5, 2003 — David Jayne, a Georgia man almost completely paralyzed from the effects of amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), will attend the signing of the Medicare prescription drug bill Monday in Washington. The invitation recognizes his three-year fight to ease restrictions on people receiving Medicare home health care services.

Jayne, who can move only two fingers, breathes with a ventilator and speaks through a communication device, will represent the groups that supported his efforts, particularly the Muscular Dystrophy Association. ALS is one of 43 neuromuscular diseases covered by MDA, and home health care services are essential lifelines for many with severe muscle-wasting diseases.

“ We congratulate David Jayne on both the success of this vital piece of legislation and the well-deserved honor of being invited by the White House,” MDA President and CEO Robert Ross said. “This amendment is of tremendous importance to all people with disabilities, including many of the 1 million Americans served by our Association.”

Jayne organized a national Internet movement to change Medicare rules that force severely ill or disabled people to be virtual prisoners in their homes in order to receive home health care services. He founded the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Illness (NCAHB).

Under current rules, people receiving Medicare homebound benefits must remain in their homes at all times, except for “brief and infrequent absences” for approved reasons. Failure to comply may result in termination of benefits, as Jayne discovered in 2000 when his services were cut off because friends took him to a college football game.

The David Jayne Homebound Amendment creates a two-year demonstration project in three states to gauge the economic impact of loosening the homebound restriction. It was sponsored by Rep. Ed Markey (D-Mass.) and Sen. Susan Collins (R-Maine), who championed similar bills that never got out of committee in two previous sessions of Congress.

“ When I lost my benefits and my story went public, I received an e-mail from a severely disabled lady who did not attend her child’s funeral because she was told she would be discharged [from Medicare homebound services],” Jayne said. “This success is for her.”

MDA, the nation’s largest nongovernmental sponsor of research and services for ALS, is a voluntary health agency working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. The Association's programs are funded almost entirely by individual private contributors.