[Congressional Record Volume 151, Number 70 (Tuesday, May 24, 2005)]
[Senate]
[Pages S5843-S5844]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                    CHILDREN'S HOSPICE INTERNATIONAL

 Mr. BENNETT. Mr. President, on May 23 of this year, Children's 
Hospice International celebrates its 22nd anniversary of helping 
children with life-threatening illnesses find comfort and care through 
hospice care programs around the country and the world.
  Several members of this distinguished body, including former Senate 
Majority Leader Robert K. Dole of Kansas and former Senator Claiborne 
Pell of Rhode Island, were among the organization's early supporters 
because they recognized the need to provide comprehensive hospice care 
for children who are suffering from difficult medical conditions.
  In 1977, when CHI was founded by Ann Armstrong-Dailey, there were no 
hospice care programs for children in the United States. In 1983, only 
four of 1,400 hospice programs in the United States were willing to 
accept children. Now, close to 450 of 3,000 U.S. hospices include 
child-specific services. And while that is good news, there is much 
more to be done.
  Of the 10 million children in America who are living with a serious 
chronic

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condition, each year about 54,000 will die; another 1.3 million will 
live but could greatly benefit from hospice and palliative care.
  Historically, hospice reimbursement guidelines, in Medicaid and most 
private plans, have required that patients forego all life-saving care 
before they can be admitted to hospice. They have also required the 
patient to be within the last 6 months of life. However, this does not 
work with pediatric patients for whom aggressive treatment is sought 
and life-expectancy cannot be estimated.
  Families should not be expected to give up on hope for a cure in 
order to receive that help. Because of the unpredictable course of many 
serious childhood illnesses, it is often very difficult for doctors to 
know when a child is within 6 months of death. Parents should not have 
to choose between hospice care and the hope for a cure. Parents should 
not have to keep their child in a hospital or other facility simply 
because insurance will not pay for the child to receive the same care, 
at a lower cost, at home.
  The most critical time for children and family members is at the 
point of diagnosis--when they need the intensive support and guidance 
that hospice and palliative care programs can provide.
  Since 1997, CHI has worked with the Centers for Medicare and Medicaid 
Services, CMS, to set up the Program for All-Inclusive Care for 
Children and their Families, CHI PACC. CHI PACC programs provide a 
continuum of care for children and their families from time of 
diagnosis, with hope for a cure, through bereavement, if needed.
  With Congressional support, a total of 18 States are already 
benefiting from this initiative through CHI PACC programs in six States 
and two regions. States currently implementing CHI PACC are Colorado, 
Florida, Kentucky, New York, Virginia, and my home State of Utah, which 
will be among the first to implement this model.
  Utah has been one of the leaders in this effort. Utah's Department of 
Health has spearheaded the effort in Utah, and the Primary Children's 
Medical Center in Salt Lake City, UT has been a central point of 
developing these pediatric palliative services to assist families from 
the point of diagnosis.
  The New England Region is also preparing to implement CHI PACC to 
serve six States--Connecticut, Maine, Massachusetts, New Hampshire, 
Rhode Island and Vermont. The Colorado program extends to patients in 
six additional States--Kansas, Montana, Nebraska, New Mexico, South 
Dakota and Wyoming. In Pennsylvania, the Department of Defense is 
working to adopt the CHI PACC model for its health care system. The 
goal of all of these efforts is to prove the effectiveness of the CHI 
PACC model so that it can be adopted universally through Medicaid, S-
SCHIP and private insurers.
  As we approach Memorial Day, it should be noted that Children's 
Hospice International is a living memorial to Ensign Alan H. Armstrong 
and his shipmates lost aboard the U.S.S. Frank E. Evans during the 
conflict in Vietnam. Armstrong is the brother of CHI Founder Ann 
Armstrong-Dailey. I deeply appreciate Ensign Armstrong's service to our 
country.
  I commend Children's Hospice International on its 22nd anniversary as 
it seeks to remove the roadblocks in private and public insurance 
programs that prevent these children and their families from receiving 
the care and support they need.
  I too believe in the vision that Ann Armstrong-Dailey, along with 
original honorary board members Barbara Bush, and Senators Claiborne 
Pell and Robert Dole, put forth 22 years ago when they launched this 
very important effort to provide dignified care and support to children 
with life-threatening conditions and their families.

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