“Mr. Jayne Goes To Washington”
by Julie Scurich
NCAHB Advocacy Chairman

Major ground was recently covered when the founder of the National Coalition to Amend the Homebound Restriction (NCAHB), David Jayne, made a trip to Washington DC. He spoke at a Congressional Briefing and met with key elected officials on behalf of HR 1490. The goal of the Coalition and HR 1490 is to amend Medicare's current policy, which requires Medicare beneficiaries who qualify for home care services to stay confined to their homes in order to retain such services. They are only allowed to leave home to go to the doctor, a weekly church service, or attend adult day care centers.

Under current Medicare policy, these beneficiaries will have the nursing services they need for survival cut off if they leave home to attend family gatherings, community events, etc. This policy was written in the 1960's before modern technology and the ADA made leaving home a possibility for those with severe disabilities. The goal of David Jayne's trip to Washington DC was to gain congressional support for the Homebound Clarification Act of 2001, HR 1490, which would eliminate the homebound restriction from Medicare's guidelines.

Just getting to Washington DC was a major achievement for Jayne, who lives 650 miles away in a small suburb just south of Atlanta. The trip required months of planning. Jayne has lived with Lou Gehrig's disease for 13 years. His ability to move is restricted to being able to twitch 3 fingers and he uses a ventilator to breathe for him, a computer to speak for him, and a feeding tube for nutrition. He himself has suffered from the harshness of Medicare's homebound restriction when his home care services were cut off for leaving home to give inspirational speeches and attend a football game. A friend of the Jayne family generously offered to fly Jayne in his Pilatus PC-12 to and from DC. On Tuesday, May 15, David Jayne left for Washington DC. That was the beginning of an eventful and productive week.

On Wednesday, May 16, David Jayne spoke on behalf of HR 1490 at a Congressional Briefing. There was standing room only in room 121 of the Cannon House Office Building where the Briefing was held. People spilled out into the hall in an effort to hear what was said. Jayne easily captured the audience's attention with his presentation, which both explained the issue clearly and moved people to tears. Jayne spent the rest of the week meeting with key elected officials and their staff on both the senate and congressional sides of the Hill. He met with Senator Jim Jeffords, who is considering introducing the Homebound Clarification Act to the Senate. This meeting took place the week before Senator Jeffords changed parties. Jeffords is still deliberating about whether or not he will be the one to introduce the Bill. He also met with Sally Canfield from the Health and Human Services Department. Canfield works with Secretary Thompson who was out of the country that week. Jayne met with Canfield to discuss the possibility of making changes in the Medicare homebound guidelines through HCFA. It was a positive meeting, and Canfield seemed to think that amending the homebound rule would be consistent with the goals of President Bush's New Freedom Initiative. Jayne also gave a speech at the National Council on Independent Living's rally on the Capitol steps, and it was well received.

CNN picked up Jayne's story while he was in Washington, and that did a lot to help raise awareness of the issue and the Bill. As Jayne was waiting in the airport to return home after his busy week in Washington, he had the good fortune to meet Senator Bob Dole and his wife who were also waiting for their plane. Senator Dole took an interest in Jayne and his story and said that he would like to help. Senator Dole has since agreed to become the Honorary Chairman of the National Coalition to Amend the Homebound Restriction.

David Jayne accomplished a lot during the time he spent in Washington DC, and he plans to return as soon as the bill is introduced to the Senate. Great strides were made in raising awareness about the need for change in Medicare's homebound policy both on Capitol Hill and with the general public. But there is a lot of work that remains to be done before this change becomes a reality. To date there are 53 cosponsors of HR 1490. NCAHB is pushing to obtain more congressional cosponsors and is asking for public support in accomplishing this.

Please visit, call, or write your representative and urge him or her to sign on in support of HR 1490. The representatives will be at their home offices on the summer break for the month of August, so this might be a good time to discuss this issue with them on an individual basis or at a local Town Meeting. NCAHB is also seeking more organizational sponsors of the coalition.

To learn more about HR 1490, the Coalition, Jayne's trip, who the current cosponsors are, and how you can help please visit the NCAHB website at:
http://amendhomeboundpolicy.homestead.com for more information.

Jewel888@aol.com is the email address for Julie Scurich.