November 26, 2003

CONGRESS PASSES DAVID JAYNE HOMEBOUND LEGISLATION

“It is a very hope-filled day for the severely disabled imprisoned by the Medicare homebound restriction,” rejoiced David Jayne, a Georgia man with ALS, of the passage of legislation loosening restrictions on some people who receive home health care services through Medicare.

The David Jayne Homebound Amendment -- named after the man who initiated it and fought three years for its passage -- is part of the Medicare prescription drug bill passed by Congress on Nov. 25. The amendment creates a two-year “demonstration” (or trial) project in three states that will gauge the effect of loosening Medicare rules that require people to stay confined in their homes in order to receive home health services. The Department of Health and Human Services will collect data on whether the rule change increases Medicare costs.

Three as-yet-unnamed states will participate in the demonstration, which will be launched within 180 days of President Bush’s signature of the Medicare bill. It will affect up to 15,000 “homebound” individuals who have severe and permanent disabilities and require help with three out of five activities of daily living, and who aren’t able to leave home without help from technology or another person.

A Three-Year Journey
Under the current Medicare homebound regulations, these beneficiaries may leave home only for brief and infrequent periods, and for approved reasons such a doctor’s appointment or to go to church. Failure to comply may result in termination of homebound services, as Jayne found out in 2000 when his services were terminated because friends took him to a college football game.

Jayne, who has had ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) for 15 years, can’t speak or breathe on his own and only has movement in two fingers. His homebound services were reinstated when he appealed the termination and the press took up his case.

In 2001, Jayne began lobbying to change the rules to reflect the reality of modern life for people with severe disabilities. He founded a group, the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Illness (NCAHB), and recruited former Sen. Robert Dole to lead it.

NCAHB managed to get reform legislation introduced but never out of committee in the last two sessions of Congress. However, Health and Human Services Secretary Tommy Thompson did instruct local home health agencies to be more reasonable in enforcing the restrictions. While praising this move, Jayne noted that only clear-cut legislation could protect the rights of the homebound.

Rep. Ed Markey (D-Mass.) and Sen. Susan Collins (R-Maine) were strong supporters of homebound reform and introduced the amendment that was ultimately passed by Congress. Jayne will attend the ceremony when President Bush signs the bill into law.

“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],” said Jayne. “This success is for her.”