David Jayne, 40, of Rex, Ga., is a long-term survivor well known in the ALS community as a mentor and a champion of issues concerning people with ALS.
Recently, Jayne has been the driving force behind reintroduction of the Homebound Clarification Act of 2001, H.R. 1490. The federal measure aims to expand on a recent loosening of the definition of "homebound" for people who receive in-home assistance provided through Medicare.
Medicare traditionally has provided in-home care for Social Security Disability Insurance recipients who are "homebound," meaning they could leave home only for visits that are "brief, infrequent and medically necessary."
The definition was expanded in December 2000 to allow people considered homebound to attend adult-day care programs and religious services. Jayne would like to see the definition made even less restrictive.
After failing last year to gain support, the House bill was reintroduced this spring by Rep. Edward J. Markey, D-Mass., and is endorsed by some 30 organizations, including MDA's National Task Force on Public Awareness. It proposes a new standard: that leaving home should usually require "considerable or taxing effort."
Such is the case for Jayne, a former stockbroker and outdoorsman who now uses a ventilator because of ALS.
Since 1997 help for his two-hour morning routine has come from a personal care attendant whose services are covered by Medicare.
Occasionally Jayne leaves home to give speeches or attend his children's activities. He knows such outings could jeopardize his assistance under current Medicare regulations.
"I was always at risk of being discharged and that was a terrible feeling. I felt I was being deceitful just trying to be a part of my family," Jayne said.
Last year he challenged his home health company and Medicare by discussing his occasional outings in an Atlanta Journal-Constitution profile, including a rare overnight trip to his college's football game.
Shortly after, his in-home assistance, provided by Healthfield Home Health, was suspended. After he contacted both his congressman, Michael "Mac" Collins, and Healthfield CEO Tony Strange, Jayne's in-home care was reinstated.
As a result of the experience, Jayne formed the National Coalition to Amend the Medical Homebound Restriction for Americans with Significant Chronic Illness (NCAHB). He also authored a petition circulated by Internet that has garnered 15,000 signatures. For more details, visit www.amendhomeboundpolicy.homestead.com.