[Congressional Record Volume 151, Number 71 (Wednesday, May 25, 2005)]
[Extensions of Remarks]
[Pages E1093-E1094]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




RECOGNIZING CHILDREN'S HOSPICE INTERNATIONAL ON ITS 22ND ANNIVERSARY ON 
                              MAY 23, 2005

                                 ______
                                 

                          HON. JAMES P. MORAN

                              of virginia

                    in the house of representatives

                        Wednesday, May 25, 2005

  Mr. MORAN of Virginia. Mr. Speaker, I rise today to commemorate the 
22nd anniversary of Children's Hospice International, a ground-
breaking, non-profit organization based in Alexandria, Virginia.
  Since 1983, Children's Hospice International (CHI) has been a 
champion of children with life-threatening conditions--and their 
families--by calling for the U.S. healthcare system to do more to meet 
their medical and emotional needs.
  In 1983, only four of 1,400 hospice programs in the United States 
were willing to accept children.
  Since then, great progress has been made--and now, aided by the 
efforts of Children's Hospice International, 450 of about 3,000 
hospices include child-specific services.
  But CHI's work is far from done. The standards and training it has 
developed for pediatric hospice programs need to be universally adopted 
by hospice, palliative care, and home care programs. CHI is also 
working to include the hospice perspectives in all areas of pediatric 
care and education.
  Of the 10 million children in the United States who are living with a 
serious chronic condition, each year about 54,000 will die without 
hospice services--and another 1.3 million children's lives could 
greatly benefit from this care.
  CHI is seeking to eliminate the roadblocks in private and public 
insurance programs that prevent these children and their families from 
receiving the full range of services they need.
  Historically, hospice and reimbursement guidelines--in Medicaid and 
most private plans--require that patients forego all life-saving care 
before they can be admitted to hospice, and that the patient be within 
the last six months of life. CHI has worked with the Centers for 
Medicare and Medicaid Services (CMS) to facilitate State implementation 
of CHI PACC programs that will reduce the impact of these requirements 
on children and families.
  These restrictions simply do not work with patients in pediatric 
care.
  We know that the most critical time for children and family members--
when they need intensive support and guidance that hospice and 
palliative care programs provide--is at the point of diagnosis.
  A parent should never have to choose between hospice care and the 
hope for a cure. And, because of the unpredictable course of many 
serious childhood illnesses, it is often very difficult for doctors to 
determine when a child is within six months of death.
  Since 1997, CHI has worked with CMS to set up the Program for All-
Inclusive Care for Children and their Families (CHI PACC).
  Unlike traditional hospice/palliative care models, a CHI PACC program 
provides a continuum of care for children and their families from time 
of diagnosis, with hope for a cure, and through bereavement if a cure 
is not attained.

[[Page E1094]]

  This program will allow states to receive federal reimbursement for a 
more coordinated service package than is generally provided under 
Medicaid, including counseling for children and families, respite care, 
and bereavement services. States operating CHI PACC programs through 
the Medicaid Home and Community-Based Waiver authority will also be 
able to serve children in families who earn too much to typically 
qualify for Medicaid.
  With Congressional support, a total of 16 states are already 
benefiting from CHI PACC. Six states have their own CHI PACC Medicaid 
program in development. These are Colorado, Florida, Kentucky, New 
York, Utah and my state of Virginia. In addition, the New England 
Region is also working toward implementing CHI PACC to cover four 
states--Maine, Massachusetts, New Hampshire and Vermont. The Colorado 
program will also cover a region, providing services to patients in six 
additional states--Kansas, Montana, Nebraska, New Mexico, South Dakota 
and Wyoming.
  While the CHI PACC model creates a core set of standards and 
principles have been developed, the model itself is flexible, allowing 
states to tailor-make different approaches to running the program. 
Currently, about 30% of the children who have life-threatening 
conditions qualify for Medicaid. All of these children and perhaps many 
more will benefit from this model of care.
  And with the support of my good friend, Mr. Murtha of Pennsylvania, 
the Department of Defense is working to adopt the CHI PACC model for 
its health care system. 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.
  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-CHIP and private insurers.
  Projections from the states developing CHI PACC programs indicate 
that they not only expect these programs to be budget neutral, but they 
hope they will actually save the taxpayers money.
  Since 1983, Children's Hospice International has provided new hope to 
the millions of children with life threatening conditions and their 
families.
  It is in recognition of these efforts that I want to express my 
personal gratitude for the work of Children's Hospice International--
and to congratulate them on their 22nd anniversary.
  Mr. Speaker, I would like to also submit for the Record, a poem by 
young Mattie J.T. Stepanek, a New York Times best selling author who 
passed away last summer, after a valiant fight with dysautonomic 
mitochondrial myopathy. Mattie volunteered for many years to be CHI's 
spokesperson--he is a hero and inspiration to us all CHI PACC is a 
living memorial to Mattie.

                               A New Hope

     I need a hope--a new hope.
     A hope that reaches for the stars, and That does not end in 
           violence or war.

     A hope that makes peace on our earth, and That does not 
           create evil in the world.

     A hope that finds cures for all diseases, and That does not 
           make people hurt, In their bodies, in their hearts, Or 
           most of all, in their spirits.

     I need a hope--a new hope, A hope that inspires me to live, 
           and To make all these things happen.

     So that the whole world can have A new hope, too.

     --Mattie J.T. Stepanek, 1999.

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