[Congressional Record Volume 149, Number 39 (Tuesday, March 11, 2003)]
[Senate]
[Pages S3547-S3548]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Ms. COLLINS (for herself, Mr. Miller, Mrs. Dole, Mr. McCain, 
        Mr. Kerry, Mr. Chambiss, and Mr. Specter):
  S. 598. A bill to amend title XVIII of the Social Security Act to 
provide for a clarification of the definition of homebound for purposes 
of determining eligibility for home health services under the medicare 
program; to the Committee on Finance.
  Ms. COLLINS. Mr. President, I am pleased to join with Senators 
Miller, Dole, McCain, Kerry, Chambliss and Specter in introducing the 
David Jayne Medicare Homebound Modernization Act of 2003 to modernize 
Medicare's outdated ``homebound'' requirement that has impeded access 
to needed home health services for many of our Nation's elderly and 
disabled Medicare beneficiaries.
  Health care in America has gone full circle. People are spending less 
time in institutions, and recovery and care for patients with chronic 
diseases and conditions have increasingly been taking place in the 
home. The highly skilled and often technically complex care that our 
home health agencies provide has enabled millions of our most 
vulnerable older and disabled individuals to avoid hospitals and 
nursing homes and stay just where they belong--in the comfort and 
security of their own homes.
  Under current law, a Medicare patient must be considered 
``homebound'' if he or she is to be eligible for home health services. 
While an individual is not actually required to be bedridden to qualify 
for benefits, his or her condition must be such that ``there exists a 
normal inability to leave home.'' The statute does allow for absences 
from the home that are ``infrequent'' or of ``relatively short 
duration.'' It also gives specific permission for the individual to 
leave home to attend medical appointments, adult day care or religious 
services.
  Unfortunately, however, the statute does not define precisely what 
``infrequent'' or ``relatively short duration'' means. It leaves it to 
the fiscal intermediaries to interpret just how many absences qualify 
as ``frequent'' and just how short those absences must be. 
Interpretations of this definition have therefore varied widely.
  As a consequence, there have been far too many instances where an 
overzealous or arbitrary interpretation of the definition has turned 
elderly or disabled Medicare beneficiaries--who are dependent upon 
Medicare home health services and medical equipment for survival--into 
virtual prisoners in their own home.
  The current homebound requirement is particularly hard on younger, 
disabled Medicare patients. For example, last year I met with David 
Jayne, a 41-year-old man with Lou Gehrig's disease, who is confined to 
a wheelchair and cannot swallow, speak or even breathe on his own. Mr. 
Jayne needs skilled nursing visits each week to enable him to remain 
independent and out of an inpatient facility. Despite his disability, 
Mr. Jayne meets frequently with youth and church groups. Speaking 
through a computerized voice synthesizer, he gives inspirational talks 
about how the human spirit can endure and even overcome great hardship.
  The Atlanta Journal Constitution ran a feature article on Mr. Jayne 
and his activities, including a report about how he had, with the help 
of family and friends, attended a football game to root for the 
University of Georgia Bulldogs. A few days later, at the direction of 
the fiscal intermediary, his home health agency--which had been sending 
a health care worker to his home for two hours, four mornings a week--
notified him that he could no longer be considered homebound, and that 
his benefits were being cut off. While his benefits were subsequently 
reinstated due to the media attention given the case, this experience 
motivated him to launch a crusade to modernize the homebound definition 
and led him to found the National Coalition to Amend the Medicare 
Homebound Restriction.
  The fact is that the current requirement reflects an outmoded view of 
life for persons who live with serious disabilities. The homebound 
criteria may have made sense thirty years ago, when an elderly or 
disabled person might have expected to live in the confines of their 
home--perhaps cared for by an extended family. The current definition, 
however, fails to reflect the technological and medical advances that 
have been made in supporting individuals with significant disabilities 
and mobility challenges. It also fails to reflect advances in treatment 
for seriously ill individuals that allow them brief periods of relative 
wellness.
  It also fails to recognize that an individual's mental acuity and 
physical stamina can only be maintained by use, and that the use of the 
body and mind is encouraged by social interactions outside the four 
walls of a home.
  The David Jayne Medicare Homebound Modernization Act of 2003 will 
create an exception to the homebound restriction based on the severity 
of the patient's functional limitations and clinical condition. The 
specific, limited exception to the homebound rule would apply to 
individuals who: one, have been certified by a physician as having a 
permanent and severe condition that will not improve; two, who will 
need assistance with three or more of the five activities of daily 
living, such as eating, dressing and bathing, for the rest of their 
lives; three, who require technological and/or personal assistance with 
the act of leaving home; and four, who are only able to leave home 
because the services provided through the home health benefit makes it 
possible for them to do so.
  We believe that our legislation is budget neutral because it is 
specifically limited to individuals who are already eligible for 
Medicare and whose conditions require the assistance of a skilled 
nurse, therapist or home health

[[Page S3548]]

aide to make it functionally possible for them to leave the home. Our 
legislation does not expand Medicare eligibility--it simply gives 
people who are already eligible for the benefit their freedom.
  This issue was first brought to my attention by former Senator Bob 
Dole, who has long been a vigorous advocate for people with 
disabilities, and I ask unanimous consent that the editorial Senator 
Dole wrote for the Washington Post last summer entitled ``Imprisoned by 
Medicare'' be printed in the Congressional Record at the conclusion of 
my remarks.
  Our proposal is also supported by the Consortium of Citizens with 
Disabilities, the Visiting Nurse Associations of America, the National 
Association for Home Care, Advancing Independence: Modernizing Medicare 
and Medicaid, AIMM, the National Coalition to Amend the Medicare 
Homebound Restriction, the Paralyzed Veterans of America, and the Half 
the Planet Foundation.
  Moreover, the David Jayne Medicare Homebound Modernization Act of 
2003 is consistent with President Bush's ``New Freedom Initiative'' 
which has, as its goal, the removal of barriers that impede 
opportunities for those with disabilities to integrate more fully into 
the community. By allowing reasonable absences from the home, our 
legislation will bring the Medicare home health benefit into the 21st 
Century, and I look forward to working with my colleagues to get it 
done.
  There being no objection, the editorial was ordered to be printed in 
the Record, as follows:

               [From the Washington Post, June 27, 2002]

                         Imprisoned by Medicare

                               (Bob Dole)

       Heroes inspire us to achieve the unachievable, to leave 
     America a better place for future generations. They remind us 
     that contributing to family and community is our highest 
     priority. I am fortunate to know such a hero, and his story 
     has inspired me to help achieve his one simple wish before he 
     dies--to change a Medicare restriction so that he and 
     thousands of others who live with permanent and severe 
     disabilities can leave their homes to see their children grow 
     up and contribute to their community without losing life-
     sustaining home health services.
       David Jayne was diagnosed with Lou Gehrig's disease at age 
     27. Otherwise known as amyotrophic lateral sclerosis (ALS), 
     this degenerative neuromuscular condition causes his muscles 
     to atrophy, leaving him unable to eat, breathe or move on his 
     own. Though his mobility is limited to moving three fingers, 
     Jayne, now 41, has demonstrated to everyone who knows him or 
     has read about him that the human spirit is indomitable.
       I met David Jayne by chance at Reagan National Airport 
     about a year ago. Attached to life support equipment and a 
     computerized voice simulator because of his body's 
     deterioration at the hand of ALS, Jayne had traveled with the 
     help of friends from his home in Rex, Ga., to meet with his 
     elected members of Congress. He came to urge them to amend 
     the Medicare homebound restriction.
       The homebound rule was intended to deter abuse of the home 
     health benefit by limiting services to only those individuals 
     whose illnesses and disabilities are so severe that leaving 
     the home would require ``a considerable and taxing effort.'' 
     In the 1960s, when this rule was created, it reflected the 
     limits of health care and technology at the time. It was 
     incomprehensible then to think that someone with ALS or any 
     severe and permanent disability could leave the home.
       While the homebound restriction has not changed, the role 
     of physicians and home health providers has. Nurses, doctors 
     and home health administrators have been turned into 
     watchdogs and given the responsibility to report any 
     knowledge of their patients leaving their homes. And the 
     awful reality of those receiving these services is that they 
     must either lie or cheat just to enjoy fundamental liberties.
       This nearly 40-year-old policy reflects an outmoded view of 
     life for persons with disabilities. Thanks to advances in 
     technology and greater community accessibility through the 
     passage of the Americans with Disabilities Act (ADA), people 
     with the most severe disabilities are able to leave their 
     homes to go to work, volunteer in their communities and enjoy 
     their family and friends. Unfortunately, Medicare policy has 
     not kept pace with our times and is now punishing the very 
     people it was intended to benefit. While Medicare has 
     developed other and better policies to deter abuse, it has 
     kept this outdated policy.
       The Medicare statute does allow for absences from the home 
     of ``infrequent'' or ``relatively short duration.'' But the 
     vagueness of this allowance leaves it to Medicare contractors 
     to interpret just how many absences qualify as ``frequent'' 
     and just how short those absences might be. To err on the 
     conservative side, contractors have stripped home health 
     coverage from those most needing it, including David Jayne, 
     whose life depends on a ventilator, intravenous feeding and 
     daily care from a home health aide. Because Jayne's story 
     went public, his home health agency discontinued these life-
     sustaining services. They were only reinstated after members 
     of Congress became involved and Jayne agreed to pay his home 
     health provider for any claim denied by Medicare. But 
     thousands of others live in fear of leaving their homes 
     because of the stories that have been reported. In two 
     heartbreaking cases, one mother's services were cut off after 
     she attended the funeral for her child, while another mother 
     did not attend the funeral of her child because of fear of 
     losing her home health care.
       For millions of Americans, Medicare-covered home health 
     services provide a less costly alternative to nursing home or 
     hospital care. There are abuses that should be corrected, but 
     not by extracting a price that no law-abiding American should 
     ever have to pay.
       David Jayne has inspired many people with his love and 
     determination and his simple words, ``Always wait another day 
     because the next day will be better.'' He inspired me to 
     volunteer to try to help.
       I urge the House of Representatives to amend this harsh 
     restriction on individual freedom by including in the 
     Medicare reform bill the David Jayne Amendment, carefully 
     drafted by Rep. Ed Markey (D-Mass.) and Sen. Susan Collins 
     (R-Maine), to do what we all know in our hearts is right, 
     including all the appropriate safeguards to prevent abuse. 
     And if this is not possible because of cost concerns, to 
     adopt an amendment to provide for those who are severely and 
     permanently disabled and who require the assistance of an 
     attendant or a skilled nursing facility.
       The amendment should give the Health and Human Services 
     Department six months to address the homebound rule and make 
     recommendations on how to bring it up to date with today's 
     technology. Make no mistake, David Jayne is a prisoner--a 
     prisoner in his specially designed wheelchair. His illness 
     has robbed him of the ability to do anything without the aid 
     of technology. Medicare shouldn't act as jailer too. 
     Thousands of David Jaynes across America are looking to the 
     president, Congress and the Department of Health and Human 
     Services for help.

                                 ______