110 HR 5192 IH: Children’s Compassionate Care
U.S. House of Representatives
2008-01-29
text/xml
EN
Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.
1.Short title; table of
contents
(a)This Act may be cited
as the Children’s Compassionate Care
Act of 2007
.
(b)The table of
contents of this Act is as follows:
Sec. 1. Short title; table of contents.
TITLE I—Grants to expand pediatric palliative care services and
research
Sec. 101. Education and training.
Sec. 102. Grants to expand pediatric palliative
care.
Sec. 103. Pediatric palliative care training and residency
grants.
Sec. 104. Model program grants.
Sec. 105. Research.
TITLE II—Pediatric palliative care demonstration
projects
Sec. 201. Medicare pediatric palliative care demonstration
projects.
Sec. 202. Private sector pediatric palliative care
demonstration projects.
Sec. 203. Symposium on pediatric palliative care.
Sec. 204. Evaluation and reports to Congress.
Sec. 205. Authorization of appropriations.
<enum>I</enum><header>Grants to expand pediatric palliative care
services and research</header>
<section commented="no" display-inline="no-display-inline" id="HB9C9455E118D4AF092406C7D0897EB36" section-type="subsequent-section"><enum>101.</enum><header>Education and
training</header><text display-inline="no-display-inline">Subpart 2 of part E
of title VII of the <act-name parsable-cite="PHSA">Public Health Service
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/295">42 U.S.C. 295 et seq.</external-xref>) is amended—</text>
<paragraph commented="no" display-inline="no-display-inline" id="H4BAE23B78B1A4B298684A27FD5178401"><enum>(1)</enum><text display-inline="yes-display-inline">in section 770(a) by inserting
<quote>except for section 771,</quote> after <quote>carrying out this
subpart</quote>; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HD6F716109E5A41D6A035D3FC92E4478"><enum>(2)</enum><text display-inline="yes-display-inline">by adding at the end the following:</text>
<quoted-block display-inline="no-display-inline" id="H28F74B4E76C647B483691E08FDB63F74" style="OLC">
<section commented="no" display-inline="no-display-inline" id="H9E5F0F6A5CFF436795EFCF433038334E" section-type="subsequent-section"><enum>771.</enum><header>Pediatric palliative
care services education and training</header>
<subsection commented="no" display-inline="no-display-inline" id="H966D51DF03504CBAB7C438D927052526"><enum>(a)</enum><header>Establishment</header><text display-inline="yes-display-inline">The Secretary, acting through the
Administrator of the Health Resources and Services Administration, may award
grants to eligible entities to provide training in pediatric palliative care
and related services for children with life-threatening conditions.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="H1EEDA520049D48FF81F7BEF3B18FE49"><enum>(b)</enum><header>Eligible entity
defined</header>
<paragraph commented="no" display-inline="no-display-inline" id="H117FEAC9C3324D899C31AB947C643B4B"><enum>(1)</enum><header>In
general</header><text display-inline="yes-display-inline">In this section, the
term <term>eligible entity</term> means a health care provider that is
affiliated with an academic institution, that is providing comprehensive
interdisciplinary pediatric palliative care services, alone or through an
arrangement with another entity, and that has demonstrated experience in
providing training and consultative services in pediatric palliative care,
including—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="H79A0668159CA4046A9C4F85F14009232"><enum>(A)</enum><text display-inline="yes-display-inline">children’s hospitals or other hospitals or
medical centers with demonstrated, or actively developing, capacity in
providing palliative care for children with life-threatening conditions;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H748565DEE8F3402792CAD96BA962CF32"><enum>(B)</enum><text display-inline="yes-display-inline">pediatric hospices or hospices with
significant pediatric palliative care programs;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H8C29DBF1C5B843DEB6A890ABA968BDB7"><enum>(C)</enum><text display-inline="yes-display-inline">home health agencies with a demonstrated or
developing capacity to serve children with life-threatening conditions and that
provide pediatric palliative care; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H9C0D38E5ABBE4BD4808356208F2EED3C"><enum>(D)</enum><text display-inline="yes-display-inline">any other entity that the Secretary
determines is appropriate.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="HF121CB9B6CEC403FA5E53781041EF9BC"><enum>(2)</enum><header>Life-threatening
condition defined</header><text display-inline="yes-display-inline">In this
subsection, the term <term>life-threatening condition</term> has the meaning
given such term by the Secretary (in consultation with hospice programs (as
defined in section 1861(dd)(2) of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x">42 U.S.C. 1395x(dd)(2)</external-xref>)) and academic experts in
end-of-life care), except that the Secretary may not limit such term to
individuals who are terminally ill (as defined in section 1861(dd)(3) of the
<act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395x(dd)(3))).</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H20AEF3C0BD774D4A00C8D92600BC8659"><enum>(c)</enum><header>Authorized
activities</header><text display-inline="yes-display-inline">Grant funds
awarded under subsection (a) shall be used to—</text>
<paragraph commented="no" display-inline="no-display-inline" id="HBF874E8486FF4C7C8467995CEB6FBC1F"><enum>(1)</enum><text display-inline="yes-display-inline">provide short-term training and education
programs in pediatric palliative care for the range of interdisciplinary health
professionals and others providing such care;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H0382C444A33C4E789ED5873B0334F150"><enum>(2)</enum><text display-inline="yes-display-inline">provide consultative services and guidance
to health care providers that are developing and building comprehensive
interdisciplinary pediatric palliative care programs;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HAC2F3294207A48319D2E36E37F167D00"><enum>(3)</enum><text display-inline="yes-display-inline">develop regional information outreach and
other resources to assist clinicians and families in local and outlying
communities and rural areas;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H3570811A1AC64B60B50099D7B8B1B04"><enum>(4)</enum><text display-inline="yes-display-inline">develop or evaluate current curricula and
educational materials being used in providing such education and guidance
relating to pediatric palliative care;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H9E8E505E4EBC4E5B90026F49F6AE19CA"><enum>(5)</enum><text display-inline="yes-display-inline">facilitate the development, assessment, and
implementation of evidence-based (when available) and best practices (as
available) clinical practice guidelines and institutional protocols and
procedures for pediatric palliative, pain management, end-of-life, supportive,
and bereavement care; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H9CF4A3BC6C2542889BA134E93485E609"><enum>(6)</enum><text display-inline="yes-display-inline">assure that children with life-threatening
conditions and the families of such children are an integral part of these
family-centered processes.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="HB718FAFD2A7E4F859D155D908B83ACE0"><enum>(d)</enum><header>Authorization of
appropriations</header><text display-inline="yes-display-inline">There are
authorized to be appropriated to carry out this section $5,000,000 for each of
fiscal years 2008 through
2012.</text>
</subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
</paragraph></section><section commented="no" display-inline="no-display-inline" id="H2520D29481404246B3871760FF72088E" section-type="subsequent-section"><enum>102.</enum><header>Grants to expand
pediatric palliative care</header><text display-inline="no-display-inline">Part
Q of title III of the <act-name parsable-cite="PHSA">Public Health Service
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/280h">42 U.S.C. 280h et seq.</external-xref>) is amended by adding at the end the
following:</text>
<quoted-block act-name="Public Health Service Act" display-inline="no-display-inline" id="H736F2B705EBE4C729FFDAC126DD21724" style="OLC">
<section commented="no" display-inline="no-display-inline" id="HB16D1F744DDF4065BF8C035F98BF0041" section-type="subsequent-section"><enum>399Z–1.</enum><header>Grants to expand
pediatric palliative care</header>
<subsection commented="no" display-inline="no-display-inline" id="HA5B6B681F95148BAB7E6671FDD257386"><enum>(a)</enum><header>Establishment</header><text display-inline="yes-display-inline">The Secretary, acting through the
Administrator of the Health Resources and Services Administration, may award
grants to eligible entities to implement or expand pediatric palliative care
programs for children with life-threatening conditions.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="H97862332B9F24E9ABCE3173748FF0188"><enum>(b)</enum><header>Eligible entity
defined</header><text display-inline="yes-display-inline">In this section, the
term <term>eligible entity</term> means—</text>
<paragraph commented="no" display-inline="no-display-inline" id="HF301AA6706E843A6B22191CAF3AF7F00"><enum>(1)</enum><text display-inline="yes-display-inline">children’s hospitals or other hospitals
with a capacity (or those developing a capacity) and ability to care for
children with life-threatening conditions;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HD033450C8C1140F400D03C45D2483694"><enum>(2)</enum><text display-inline="yes-display-inline">hospices with a demonstrated or developing
capacity and ability to provide palliative care (including symptom management,
assistance with and support in decisionmaking) for children with
life-threatening conditions and their families in a family-centered manner;
and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HD663603E28E1433090E7436B4E981200"><enum>(3)</enum><text display-inline="yes-display-inline">home health agencies with—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="HA8B6CB558BEB4F5D8CA79911BC29429D"><enum>(A)</enum><text display-inline="yes-display-inline">a demonstrated capacity (or developing
capacity) and ability to care for children with life-threatening conditions;
and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H2D984659B0FE4D0D8985B65854D0B72E"><enum>(B)</enum><text display-inline="yes-display-inline">demonstrated expertise (or actively
developing capacity) in providing pediatric palliative care.</text>
</subparagraph></paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H062184A571034A2390CCA68AE2D3E82"><enum>(c)</enum><header>Authorized
activities</header><text display-inline="yes-display-inline">Grant funds
awarded under subsection (a) shall be used to—</text>
<paragraph commented="no" display-inline="no-display-inline" id="HAE355076B49E453387EFEA61F88E1E12"><enum>(1)</enum><text display-inline="yes-display-inline">create new or expand existing pediatric
palliative care programs;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H282F39B5A8F4495286769EDEDE7E9382"><enum>(2)</enum><text display-inline="yes-display-inline">start or expand needed additional care
settings, such as respite, hospice, outpatient, inpatient day services, or
other care settings to provide a continuum of care across inpatient, home, and
community-based settings for pediatric palliative care;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HD25E65DBF8D349A7B7C823806F758917"><enum>(3)</enum><text display-inline="yes-display-inline">expand comprehensive pediatric palliative
care services, including care coordination services, to greater numbers of
children with life-threatening conditions and broader service areas, including
regional and rural outreach; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HCB52F654CCF7493A89A0CCB80083DC79"><enum>(4)</enum><text display-inline="yes-display-inline">support communication linkages and care
coordination, applying telemedicine and teleconferencing technologies, and
measures to improve both patient and family safety, and measures to improve
efficacy and quality.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="HD9C9B4216AB3448DBC46F700B941ACED"><enum>(d)</enum><header>Application</header><text display-inline="yes-display-inline">Each eligible entity desiring a grant under
this section shall submit an application to the Administrator at such time, in
such manner, and containing such information as the Administrator may
require.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="H865BC90D15AD4EE5AC7FF1BEC3BF564E"><enum>(e)</enum><header>Authorization of
appropriations</header><text display-inline="yes-display-inline">There are
authorized to be appropriated to carry out this section $10,000,000 for each of
fiscal years 2008 through
2012.</text>
</subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
</section><section commented="no" display-inline="no-display-inline" id="H52227AEA2951492CBE46B74F7C1EC396" section-type="subsequent-section"><enum>103.</enum><header>Pediatric palliative
care training and residency grants</header><text display-inline="no-display-inline">Part A of title IV of the
<act-name parsable-cite="PHSA">Public Health Service Act</act-name> (42 U.S.C.
281 et seq.) is amended by adding at the end the following:</text>
<quoted-block act-name="Public Health Service Act" display-inline="no-display-inline" id="H08AD12C01BCD43DA81E033B8C6684BA3" style="OLC">
<section commented="no" display-inline="no-display-inline" id="H5A5C2B69492B40228B7C51E36265A538" section-type="subsequent-section"><enum>404I.</enum><header>Pediatric
palliative care training and residency grants</header>
<subsection commented="no" display-inline="no-display-inline" id="H9D1ED3FE44E74236AE6648E663D6BE18"><enum>(a)</enum><header>Establishment</header><text display-inline="yes-display-inline">The Director of the National Institutes of
Health is authorized to award training grants to eligible entities to expand
the number of physicians, nurses, mental health professionals, and appropriate
allied health professionals and specialists (as determined by the Secretary)
with interdisciplinary pediatric palliative clinical training and research
experience.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="H1F8FA8BAA70A4F51A921D471F7B84CB4"><enum>(b)</enum><header>Eligible entity
defined</header><text display-inline="yes-display-inline">In this section, the
term <term>eligible entity</term> means—</text>
<paragraph commented="no" display-inline="no-display-inline" id="H754A8B66440F4737B085BEBAF42CC875"><enum>(1)</enum><text display-inline="yes-display-inline">a pediatric department of a medical school
and other related departments including—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="H1F0E71F1F4204D8694DDBE1FD665005C"><enum>(A)</enum><text display-inline="yes-display-inline">oncology;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HC2869CC429C84F7EA4C12D64080077CF"><enum>(B)</enum><text display-inline="yes-display-inline">virology;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H1CD4DE1F3EAF4B12ABFA32F4D97300B7"><enum>(C)</enum><text display-inline="yes-display-inline">neurology;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H0A10446CD5464895A2910127ACDAF11B"><enum>(D)</enum><text display-inline="yes-display-inline">psychiatry; or</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HC3C356BB837C49C8A078EFC58DB4AEF"><enum>(E)</enum><text>pain
medicine;</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="H9310B212B45747F4AD060126C1A3CAEA"><enum>(2)</enum><text display-inline="yes-display-inline">a school of nursing (when partnering with
physicians or a provider eligible to receive payments under title XVIII of the
Social Security Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1395">42 U.S.C. 1395 et seq.</external-xref>), as available);</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H1E54C22C159E460B87DAE7C023616C1F"><enum>(3)</enum><text display-inline="yes-display-inline">a school of psychology (when partnering
with physicians or a provider eligible to receive payments under title XVIII of
the Social Security Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1395">42 U.S.C. 1395 et seq.</external-xref>), as available);</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HDBE17381D6794E7C907EA68F86F2CCA6"><enum>(4)</enum><text display-inline="yes-display-inline">a school of social work (when partnering
with physicians or a provider eligible to receive payments under title XVIII of
the Social Security Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1395">42 U.S.C. 1395 et seq.</external-xref>), as available);</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HF94940B2526F4175868CEBBC17260095"><enum>(5)</enum><text display-inline="yes-display-inline">a children’s hospital or other hospital
with demonstrated expertise or developing capacity to serve pediatric patients
with life-threatening conditions; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HC889930C333346D2B85D2F828FE0EFC7"><enum>(6)</enum><text>an entity that has
access to a continuum of care such as acute care, inpatient, hospice,
outpatient, or home-based hospice to fully expose the trainee to palliative
care.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H45329E2BC2DD4E0299C5BCDF725730FA"><enum>(c)</enum><header>Application</header><text display-inline="yes-display-inline">Each eligible entity desiring a grant under
this section shall submit an application to the Director at such time, in such
manner, and containing such information as the Director may require. Such
application shall include a plan for evaluating outcomes.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="H8679357696104F14BDCB7036E3C0DFCC"><enum>(d)</enum><header>Authorization of
appropriations</header><text display-inline="yes-display-inline">There are
authorized to be appropriated to carry out this section $5,000,000 for each of
fiscal years 2008 through
2012.</text>
</subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
</section><section commented="no" display-inline="no-display-inline" id="H8CE66EE79B6F466E8CBC3C8139AA60C4" section-type="subsequent-section"><enum>104.</enum><header>Model program
grants</header><text display-inline="no-display-inline">Part Q of title III of
the <act-name parsable-cite="PHSA">Public Health Service Act</act-name> (42
U.S.C. 280h et seq.), as amended by section 102, is further amended by adding
at the end the following:</text>
<quoted-block act-name="Public Health Service Act" display-inline="no-display-inline" id="HD5296865A581438FB59D891EBB443D06" style="OLC">
<section commented="no" display-inline="no-display-inline" id="H3E622798759C4252866941B15811B42E" section-type="subsequent-section"><enum>399Z–2.</enum><header>Model program
grants</header>
<subsection commented="no" display-inline="no-display-inline" id="H0CABD35014E14A7A9CFA2371ED8FC371"><enum>(a)</enum><header>Establishment</header><text display-inline="yes-display-inline">The Secretary may award grants to eligible
entities to enhance pediatric palliative care and care for children with
life-threatening conditions in general pediatric or family practice residency
training programs and general or pediatric nursing education programs through
the development of model interdisciplinary programs that partner with other
health professional schools such as psychology, pharmacology, nursing, or
social work, when practicable.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="H8C25ADD8A0A64F6085FDA0EE0B3DBBC"><enum>(b)</enum><header>Eligible entity
defined</header><text display-inline="yes-display-inline">In this section, the
term <term>eligible entity</term> means a provider eligible to receive payments
under title XVIII of the Social Security Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1395">42 U.S.C. 1395 et seq.</external-xref>), in
either a pediatric department of—</text>
<paragraph commented="no" display-inline="no-display-inline" id="H9F511938D5044783AB850549CCD4AC08"><enum>(1)</enum><text display-inline="yes-display-inline">a medical school;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H738ED182975E49CFA30053E4D740AC24"><enum>(2)</enum><text>a nursing
school;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H8175DDB4BE23473CAA00CFC3B9A6F37D"><enum>(3)</enum><text display-inline="yes-display-inline">a children’s hospital; or</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HF8A17AE80C894E89BD78C9D3DE922D37"><enum>(4)</enum><text display-inline="yes-display-inline">any other hospital with a general pediatric
or family practice residency program serving pediatric patients with
life-threatening conditions.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="HBDC8A875CCEE4DD39CFA471FE32EBFD2"><enum>(c)</enum><header>Application</header><text display-inline="yes-display-inline">Each eligible entity desiring a grant under
this section shall submit an application to the Administrator at such time, in
such manner, and containing such information as the Administrator may require
(including a plan for evaluating outcomes).</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="HFB6B6EA183AA4F96BA6E477C3F091D08"><enum>(d)</enum><header>Authorization of
appropriations</header><text display-inline="yes-display-inline">There are
authorized to be appropriated to carry out this section $5,000,000 for each of
fiscal years 2008 through
2012.</text>
</subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
</section><section commented="no" display-inline="no-display-inline" id="HF3A1E2AB70474F0D8F03BD69C5F9EB20" section-type="subsequent-section"><enum>105.</enum><header>Research</header>
<subsection commented="no" display-inline="no-display-inline" id="HEBB353F0AEF3430CAFDA6433AA00F100"><enum>(a)</enum><header>Pain and symptom
management</header><text display-inline="yes-display-inline">The Director of
the National Institutes of Health (in this section referred to as the
<quote>Director</quote>) shall provide research grants to fund
interdisciplinary research in pediatric pain and symptom management that will
utilize existing facilities of the National Institutes of Health
including—</text>
<paragraph commented="no" display-inline="no-display-inline" id="H57F8E7A5F0744E2985A2519FFF4646FA"><enum>(1)</enum><text display-inline="yes-display-inline">pediatric pharmacological research
units;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HA8BB4AB020614BE5952287FA6034C9BA"><enum>(2)</enum><text display-inline="yes-display-inline">clinical translational science awardees;
and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HB9F9B42473004BCA98E0CE795C009DEC"><enum>(3)</enum><text display-inline="yes-display-inline">other centers providing infrastructure for
patient-oriented research.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H8E64660F0D024243B55CC624AC6316C0"><enum>(b)</enum><header>Eligible
entities</header><text display-inline="yes-display-inline">In carrying out
subsection (a), the Director may award grants for the conduct of pediatric pain
and symptom management research to—</text>
<paragraph commented="no" display-inline="no-display-inline" id="HC1E759D73DEB4C6D9F69C8DE7712B3B8"><enum>(1)</enum><text display-inline="yes-display-inline">children’s hospitals or other hospitals
serving a significant number of children with life-threatening
conditions;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H8CC0BB139FD5416390BB06BBA1DB714F"><enum>(2)</enum><text display-inline="yes-display-inline">pediatric departments of medical
schools;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HFA63ECEE6C674B29836ED33115D5E9CE"><enum>(3)</enum><text>pediatric
departments of nursing schools;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H6167A0490F63451E812C13B75231DCC2"><enum>(4)</enum><text display-inline="yes-display-inline">institutions currently participating in
National Institutes of Health network of pediatric pharmacological research
units;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HF1803E140F2B43EC9B39715293FAF74"><enum>(5)</enum><text display-inline="yes-display-inline">hospices with pediatric palliative care
programs and academic affiliations;</text>
</paragraph><paragraph id="H0341DC9E7BFA47D58EA0AA5233C233B7"><enum>(6)</enum><text>pediatric
departments of social work schools;</text>
</paragraph><paragraph id="H3654841EEC5A41C8B4EEBDC02E5E2F6"><enum>(7)</enum><text>pediatric
departments of psychology schools;</text>
</paragraph><paragraph id="HB5B790993FFE4AA997808900ECE7DA67"><enum>(8)</enum><text>pediatric
departments of pharmacology schools; and</text>
</paragraph><paragraph id="H2EA3D6BDB4174EB6B66414942EB614BB"><enum>(9)</enum><text>pediatric pain
medicine programs.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H628D8F24F86C4FD8A1A4D3D478877B20"><enum>(c)</enum><header>Authorization of
appropriations</header><text display-inline="yes-display-inline">There are
authorized to be appropriated to carry out this section $10,000,000, to remain
available until expended.</text>
</subsection></section><enum>II</enum><header>Pediatric palliative care demonstration
projects</header>
<section commented="no" display-inline="no-display-inline" id="HC128F01EC0A44F0196D2D540000072C8" section-type="subsequent-section"><enum>201.</enum><header>Medicare pediatric
palliative care demonstration projects</header>
<subsection commented="no" display-inline="no-display-inline" id="H87A71C06CAB343988F6CAEFC09B48550"><enum>(a)</enum><header>Definitions</header><text display-inline="yes-display-inline">In this section:</text>
<paragraph commented="no" display-inline="no-display-inline" id="H46FFC162BB94468A8920102960FDC929"><enum>(1)</enum><header>Care
coordination services</header><text display-inline="yes-display-inline">The
term <term>care coordination services</term> means services that provide for
the coordination of, and assistance with, referral for clinical and other
services, including interdisciplinary care conferences, coordination with other
providers involved in caring for the eligible child with a life-threatening
condition, patient and family-centered caregiver education and counseling, and
such other services as the Secretary determines to be appropriate in order to
facilitate the coordination and continuity of care furnished to an eligible
child and the family of such child.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H5C760249E70140BAB9B3FB009C359D2C"><enum>(2)</enum><header>Demonstration
project</header><text display-inline="yes-display-inline">The term
<term>demonstration project</term> means a demonstration project established by
the Secretary under subsection (b)(1).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HF82F8A4B34AF409EB674CD14CBBC49E1"><enum>(3)</enum><header>Eligible
child</header><text display-inline="yes-display-inline">The term <term>eligible
child</term> means an individual with a life-threatening condition who is
entitled to benefits under part A of the Medicare program and who is under 21
years of age.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HBC2E0038883C41D600A185BA73ECAB8C"><enum>(4)</enum><header>Eligible
provider</header><text display-inline="yes-display-inline">The term
<term>eligible provider</term> means—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="HCA17D9FB71864730A9699B73126B89E"><enum>(A)</enum><text display-inline="yes-display-inline">a pediatric palliative care program that is
a public agency or private organization (or a subdivision thereof)
which—</text>
<clause commented="no" display-inline="no-display-inline" id="H2473EF26BB214FFD96A62922E0001D37"><enum>(i)</enum><subclause commented="no" display-inline="yes-display-inline" id="HCD759084F3D7496FBA62C705C542E00"><enum>(I)</enum><text display-inline="yes-display-inline">is primarily engaged in providing the care
and services described in section 1861(dd)(1) of the
<act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395(dd)(1)) and makes such services available (as needed) on a 24-hour basis
and which also provides family-centered counseling (including supportive and
bereavement counseling) for the eligible child and the immediate family of such
child;</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="H404ED23000BD4F639EF4CF9CCBE8E046" indent="up1"><enum>(II)</enum><text display-inline="yes-display-inline">provides for such care and services in
eligible children’s homes, on an outpatient basis, and on a short-term
inpatient basis, directly or under arrangements made by the agency or
organization, except that—</text>
<item commented="no" display-inline="no-display-inline" id="H1651466B11A840B1B863BFDD8FE04434"><enum>(aa)</enum><text display-inline="yes-display-inline">the agency or organization must routinely
provide directly substantially all of each of the services described in
subparagraphs (A), (C), and (H) of such section 1861(dd)(1);</text>
</item><item commented="no" display-inline="no-display-inline" id="HD0CC6DAD1C2B47A694A678C54C9CB6A9"><enum>(bb)</enum><text display-inline="yes-display-inline">in the case of other services described in
such section 1861(dd)(1) which are not provided directly by the agency or
organization, the agency or organization must maintain professional management
responsibility for all such services furnished to an eligible child and the
family of such child, regardless of the location or facility in which such
services are furnished; and</text>
</item></subclause><subclause commented="no" display-inline="no-display-inline" id="H7AC823FE3A31472BAB00B04C495DA21B" indent="up1"><enum>(III)</enum><item commented="no" display-inline="yes-display-inline" id="H5F3C498293844099AEEEAFBB808BF68D"><enum>(aa)</enum><text display-inline="yes-display-inline">identifies medical, community, and social
service needs;</text>
</item><item commented="no" display-inline="no-display-inline" id="H7659196CE58A4BD5832B162B74ED2BC1" indent="up1"><enum>(bb)</enum><text display-inline="yes-display-inline">simplifies access to service;</text>
</item><item commented="no" display-inline="no-display-inline" id="H0C2C30A7CFE44D78BEC721E64F75CD4D" indent="up1"><enum>(cc)</enum><text display-inline="yes-display-inline">uses the full range of community resources,
including the friends and family of the eligible child; and</text>
</item><item commented="no" display-inline="no-display-inline" id="HD6365407497144849FBDAA80003F22DC" indent="up1"><enum>(dd)</enum><text display-inline="yes-display-inline">provides educational opportunities relating
to health care; and</text>
</item></subclause></clause><clause commented="no" display-inline="no-display-inline" id="H567D6C7ECF214676A94120A415F4F8B1"><enum>(ii)</enum><text display-inline="yes-display-inline">has an interdisciplinary group of personnel
which—</text>
<subclause commented="no" display-inline="no-display-inline" id="HB0CD391498354E018824456136A5FD9F"><enum>(I)</enum><text display-inline="yes-display-inline">includes at least—</text>
<item commented="no" display-inline="no-display-inline" id="HF2CA76509C8749DEA400E1D47EF351D"><enum>(aa)</enum><text display-inline="yes-display-inline">1 physician (as defined in section
1861(r)(1) of the <act-name parsable-cite="SSA">Social Security Act</act-name>
(<external-xref legal-doc="usc" parsable-cite="usc/42/1395x">42 U.S.C. 1395x(r)(1)</external-xref>));</text>
</item><item commented="no" display-inline="no-display-inline" id="HC2DEBDDA77B748D900F06C63A7356817"><enum>(bb)</enum><text display-inline="yes-display-inline">1 registered professional nurse;</text>
</item><item commented="no" display-inline="no-display-inline" id="H7ED26F294EA046B6AC6BC789CE007C09"><enum>(cc)</enum><text display-inline="yes-display-inline">1 licensed mental health professional;
and</text>
</item><item commented="no" display-inline="no-display-inline" id="H9B908EB3793040E18866AA9E146CF8A2"><enum>(dd)</enum><text display-inline="yes-display-inline">1 licensed social worker;</text>
</item><continuation-text commented="no" continuation-text-level="subclause">employed by or, in the case of a
physician described in item (aa), under contract with the agency or
organization;</continuation-text></subclause><subclause commented="no" display-inline="no-display-inline" id="H99655EC6CB7A435BA252615BA5896D23" indent="up1"><enum>(II)</enum><text display-inline="yes-display-inline">provides (or supervises the provision of)
the care and services described in such section 1861(dd)(1); and</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="HD80D5B9F1DE14EE3AA87A93129D138B" indent="up1"><enum>(III)</enum><text display-inline="yes-display-inline">establishes the policies governing the
provision of such care and services;</text>
</subclause></clause><clause commented="no" display-inline="no-display-inline" id="HA6948E8B32054A24A952CBBF23BA82A2"><enum>(iii)</enum><text display-inline="yes-display-inline">maintains central clinical records on all
patients;</text>
</clause><clause commented="no" display-inline="no-display-inline" id="HF373B2B88A13407D8C4CBBAF2BA2B609"><enum>(iv)</enum><text display-inline="yes-display-inline">does not discontinue the palliative care it
provides with respect to an eligible child and the family of such child because
of the inability of the eligible child to pay for such care;</text>
</clause><clause commented="no" display-inline="no-display-inline" id="HF43DB39BA64E40A39211A66252538774"><enum>(v)</enum><subclause commented="no" display-inline="yes-display-inline" id="HED74C2DA7EAE4602006BE573B1E8CFF"><enum>(I)</enum><text display-inline="yes-display-inline">uses volunteers in its provision of care
and services in accordance with standards set by the Secretary, which standards
shall ensure a continuing level of effort to use such volunteers; and</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="H490D0D5F9B01449995E461521696C736" indent="up1"><enum>(II)</enum><text display-inline="yes-display-inline">maintains records on the use of these
volunteers and the cost savings and expansion of care and services achieved
through the use of these volunteers;</text>
</subclause></clause><clause commented="no" display-inline="no-display-inline" id="HD217760E42F741879CA6EB7B12476163"><enum>(vi)</enum><text display-inline="yes-display-inline">in the case of an agency or organization in
any State in which State or applicable local law provides for the licensing of
agencies or organizations of this nature, is licensed pursuant to such
law;</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H6F5F83898A15446B82DD9B29E8F4D400"><enum>(vii)</enum><text display-inline="yes-display-inline">seeks to ensure that eligible children and
their families receive complete, timely, understandable information about
diagnosis, prognosis, treatments, and palliative care options;</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H80965683F7A345D3A7911301F70F4B9"><enum>(viii)</enum><text>seeks to ensure
access to routine pediatric care as appropriate for the eligible child;</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H7B1601710D724367B3CFB986F194EC07"><enum>(ix)</enum><text display-inline="yes-display-inline">ensures that children and their families
participate in effective and timely prevention, assessment, and treatment of
physical and psychological symptoms of distress; and</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H6CA8DFEDB93547E0AE6FEB6EF1A16771"><enum>(x)</enum><text display-inline="yes-display-inline">meets such other requirements as the
Secretary may find necessary in the interest of the health and safety of the
eligible children who are provided with palliative care by such agency or
organization; and</text>
</clause></subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HD989D95E25FF45499C45B16866B8844C"><enum>(B)</enum><text display-inline="yes-display-inline">any other individual or entity with an
agreement under section 1866 of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395cc">42 U.S.C. 1395cc</external-xref>) that—</text>
<clause commented="no" display-inline="no-display-inline" id="H422EB7BBC9D64D31887D49B9CE738679"><enum>(i)</enum><text display-inline="yes-display-inline">has demonstrated expertise in providing
palliative care to pediatric populations; and</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H0491483FACCA4771AC14D5C094CBB91"><enum>(ii)</enum><text display-inline="yes-display-inline">the Secretary determines is
appropriate.</text>
</clause></subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="HF866C2F96F7F49C4A35F692B006282A5"><enum>(5)</enum><header>Life-threatening
condition</header><text display-inline="yes-display-inline">The term
<term>life-threatening condition</term> has the meaning given such term by the
Secretary (in consultation with hospice programs (as defined in section
1861(dd)(2) of the <act-name parsable-cite="SSA">Social Security Act</act-name>
(<external-xref legal-doc="usc" parsable-cite="usc/42/1395x">42 U.S.C. 1395x(dd)(2)</external-xref>)) and academic experts in end-of-life care), except
that the Secretary may not limit such term to individuals who are terminally
ill (as defined in section 1861(dd)(3) of the <act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395x(dd)(3))).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H83D25A3B3CE24366004B2E19D761E426"><enum>(6)</enum><header>Medicare
program</header><text display-inline="yes-display-inline">The term
<term>Medicare program</term> means the health benefits program under title
XVIII of the <act-name parsable-cite="SSA">Social Security Act</act-name> (42
U.S.C. 1395 et seq.).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HDE6FB54046E5406C8D91A994292E7CA7"><enum>(7)</enum><header>Secretary</header><text display-inline="yes-display-inline">The term <term>Secretary</term> means the
Secretary of Health and Human Services.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H6AEC2488620B4E61864DA8A054872363"><enum>(b)</enum><header>Pediatric
palliative care demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="HF9BE23DB771C493E8FC7FAC6070F51"><enum>(1)</enum><header>Establishment</header><text display-inline="yes-display-inline">The Secretary shall establish demonstration
projects in accordance with the provisions of this subsection to provide
pediatric palliative care to eligible children.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HBAC09BC4AE244ABF86C4B928DF583330"><enum>(2)</enum><header>Participation</header>
<subparagraph commented="no" display-inline="no-display-inline" id="H2DA79ACB5BBB4AC1B626CDC443EBC4D"><enum>(A)</enum><header>Eligible
providers</header><text display-inline="yes-display-inline">Any eligible
provider may furnish items or services covered under the pediatric palliative
care benefit.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HBC0DAD9E6A054806A924087CBC59008E"><enum>(B)</enum><header>Eligible
children</header><text display-inline="yes-display-inline">The Secretary shall
permit any eligible child residing in the service area of an eligible provider
participating in a demonstration project to participate in such project on a
voluntary basis.</text>
</subparagraph></paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="HECFC92E644AF4782B193C30099B598A0"><enum>(c)</enum><header>Services under
demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="H37A746991841403D90324E046080E95C"><enum>(1)</enum><header>In
general</header><text display-inline="yes-display-inline">Except as otherwise
provided in this subsection, the provisions of section 1814(i) of the
<act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395f(i)) shall apply to the payment for pediatric palliative care provided
under the demonstration projects in the same manner in which such section
applies to the payment for hospice care (as defined in section 1861(dd)(1) of
the <act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395x(dd)(1))) provided under the Medicare program.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HF10077AE64A1413494A22424CCA10012"><enum>(2)</enum><header>Coverage of
pediatric palliative care</header>
<subparagraph commented="no" display-inline="no-display-inline" id="H524E17563972487A9794F609B3FBD2C1"><enum>(A)</enum><header>In
general</header><text display-inline="yes-display-inline">Notwithstanding
section 1862(a)(1)(C) of the <act-name parsable-cite="SSA">Social Security
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395y">42 U.S.C. 1395y(a)(1)(C)</external-xref>), the Secretary shall provide for
reimbursement for items and services provided under the pediatric palliative
care benefit made available under the demonstration projects in a manner that
is consistent with the requirements of subparagraph (B).</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HA3AD246C606F4914A1B12F8F9EFF3790"><enum>(B)</enum><header>Benefit</header><text display-inline="yes-display-inline">Under the pediatric palliative care
benefit, the following requirements shall apply:</text>
<clause commented="no" display-inline="no-display-inline" id="H8EDA5901898F405AB839AF648EB96E00"><enum>(i)</enum><header>Waiver of
requirement to elect hospice care</header><text display-inline="yes-display-inline">Each eligible child may receive benefits
without an election under section 1812(d)(1) of the
<act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395d(d)(1)) to receive hospice care (as defined in section 1861(dd)(1) of such
Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x">42 U.S.C. 1395x(dd)(1)</external-xref>)) having been made with respect to the eligible
child.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="HDF6F38A67C354F948366BABD3728E8C8"><enum>(ii)</enum><header>Authorization
for curative treatment</header><text display-inline="yes-display-inline">Each
eligible child may continue to receive benefits for disease and symptom
modifying treatment under the Medicare program.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H20CB753A49BF4577BB83A9FBC895540"><enum>(iii)</enum><header>Provision of
care coordination services</header><text display-inline="yes-display-inline">Each eligible child shall receive care
coordination services (as defined in subsection (a)(1)) and hospice care (as so
defined) through an eligible provider participating in a demonstration project,
regardless of whether such individual has been determined to be terminally ill
(as defined in section 1861(dd)(3) of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x">42 U.S.C. 1395x(dd)(3)</external-xref>)).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H7B5049E41FA64F64B6CFD1E4FDF64E80"><enum>(iv)</enum><header>Availability of
information on pediatric palliative care</header><text display-inline="yes-display-inline">Each eligible child and the family of such
child shall receive information and education in order to better understand the
utility of pediatric palliative care.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="HBCC334B2984344C69483A6DB596792A5"><enum>(v)</enum><header>Availability of
supportive and bereavement counseling</header><text display-inline="yes-display-inline">Each eligible child and the family of such
child shall receive supportive counseling and bereavement counseling, if
appropriate.</text>
</clause><clause id="HA8A78DF120064F59B5F2E9C6003D0230"><enum>(vi)</enum><header>Provision of
individual care</header><text>Each eligible child and the family of such child
shall receive appropriate care that is—</text>
<subclause id="H7C06ABE569F7484783D2C55EB1B376F3"><enum>(I)</enum><text>designed to fit
the child’s physical, cognitive, emotional, and spiritual level of development
that shall involve and respect both the child and the family of such child;
and</text>
</subclause><subclause id="HA7875A81C5B54DF2B5F0D25FCB66DD03"><enum>(II)</enum><text>effective and
compassionate from diagnosis through death and bereavement.</text>
</subclause></clause><clause id="H18B2E94F993D419CB72EF28DC4ABF68F"><enum>(vii)</enum><header>Professional
education</header><text>Each professional caring for an eligible child shall
have special responsibilities for educating themself and others about the
identification, management, and discussion of the last phase of a child’s fatal
medical problem.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H6DEEECEA94F74EBB8E78E88E64FF602"><enum>(viii)</enum><header>Additional
benefits</header><text display-inline="yes-display-inline">Under the
demonstration projects, the Secretary may include any other item or
service—</text>
<subclause commented="no" display-inline="no-display-inline" id="H4DD9E06ACA8E419D82E09C990019DEB6"><enum>(I)</enum><text display-inline="yes-display-inline">for which payment may otherwise be made
under the Medicare program; and</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="H8D2D0E854C61445788FEE5800748F05"><enum>(II)</enum><text display-inline="yes-display-inline">that is consistent with the recommendations
contained in the report published in 2003 by the Institute of Medicine of the
National Academy of Sciences entitled <quote>When Children Die: Improving
Palliative and End-of-Life Care for Children and Their Families</quote>.</text>
</subclause></clause></subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H848D865F1BD04359BD532E27292824DF"><enum>(C)</enum><header>Payment</header>
<clause commented="no" display-inline="no-display-inline" id="HBCF0DDFBAD754D7B9953D0E1FBFB74C9"><enum>(i)</enum><header>Establishment of
payment methodology</header><text display-inline="yes-display-inline">The
Secretary shall establish a methodology for determining the amount of payment
for pediatric palliative care furnished under the demonstration projects that
is similar to the methodology for determining the amount of payment for hospice
care (as defined in section 1861(dd)(1) of the <act-name parsable-cite="SSA">Social Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x">42 U.S.C. 1395x(dd)(1)</external-xref>))
under section 1814(i) of such Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1395f">42 U.S.C. 1395f(i)</external-xref>), except as provided in
the following subclauses:</text>
<subclause commented="no" display-inline="no-display-inline" id="H0C60A8F79B8F40AB9DE6F7544132DADD"><enum>(I)</enum><header>Amount of
payment</header><text display-inline="yes-display-inline">Subject to subclauses
(II) and (III), the amount of payment for pediatric palliative care shall be
equal to the amount that would be paid for hospice care (as so defined),
increased by an appropriate percentage to account for the additional costs of
providing supportive and bereavement counseling and care coordination services
(as defined in subsection (a)(1)).</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="H828E6B0321B54CD0890016C45DD64D8F"><enum>(II)</enum><header>Waiver of
hospice cap</header><text display-inline="yes-display-inline">The limitation
under section 1814(i)(2) of the <act-name parsable-cite="SSA">Social Security
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395f">42 U.S.C. 1395f(i)(2)</external-xref>) shall not apply with respect to
pediatric palliative care and amounts paid for pediatric palliative care under
this subparagraph shall not be counted against the cap amount described in such
section.</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="H7DCD08DB599246EF9260516489D7DBB"><enum>(III)</enum><header>Separate
payment for counseling services</header><text display-inline="yes-display-inline">Notwithstanding section 1814(i)(1)(A) of
the <act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395f(i)(1)(A)), the Secretary may pay for bereavement counseling as a separate
service.</text>
</subclause></clause><clause commented="no" display-inline="no-display-inline" id="H3E79898D04DF4519B4D1F2E3C60077E5"><enum>(ii)</enum><header>Special rules
for payment of Medicare+Choice organizations</header><text display-inline="yes-display-inline">The Secretary shall establish procedures
under which the Secretary provides for an appropriate adjustment in the monthly
payments made under section 1853 of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395w-23">42 U.S.C. 1395w–23</external-xref>) to any Medicare+Choice
organization that provides health care items or services to an eligible child
who is participating in a demonstration project.</text>
</clause></subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="H1FE4C213E3E84120A6FBD254E69AA00"><enum>(3)</enum><header>Coverage of
pediatric palliative care consultation services</header><text display-inline="yes-display-inline">Under the demonstration projects, the
Secretary shall provide for a one-time payment on behalf of each eligible child
who has not yet elected to participate in the demonstration project for
services that are furnished by a physician or advanced practice registered
nurse who is either the medical or nursing director or an employee of a
provider eligible to receive payments under title XVIII of the Social Security
Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1395">42 U.S.C. 1395 et seq.</external-xref>) participating in such a project and that consist
of—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="H2CE5B0358D0F4E4E9DBF75828DB547D4"><enum>(A)</enum><text display-inline="yes-display-inline">an evaluation of the individual’s need for
pain and symptom management, including the need for pediatric palliative
care;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H7A5819B2E67A4097AFF68A31E21A072"><enum>(B)</enum><text display-inline="yes-display-inline">counseling the individual and the family of
such individual with respect to the benefits of pediatric palliative care and
care options;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HEC012A471449408D9264E5000894A900"><enum>(C)</enum><text display-inline="yes-display-inline">if appropriate, advising the individual and
the family of such individual regarding advanced care planning; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H599F65857EB64A96A1B6D2E736E5AA00"><enum>(D)</enum><text>care
coordination.</text>
</subparagraph></paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H0E79F65D85CE40AEB2819EEBDCB1C63"><enum>(d)</enum><header>Conduct of
demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="H575B845D2DDE46D2AA546800B978D44F"><enum>(1)</enum><header>Sites</header><text display-inline="yes-display-inline">The Secretary shall conduct demonstration
projects in not less than 4, but not more than 8, sites.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H6F4AE85E03EB4177A24261785829B381"><enum>(2)</enum><header>Selection of
sites</header><text display-inline="yes-display-inline">The Secretary shall
select demonstration sites on the basis of proposals submitted under paragraph
(3) that are located in geographic areas that—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="HB61BF42A834E4308942300996C715251"><enum>(A)</enum><text display-inline="yes-display-inline">include both urban and rural eligible
organizations;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H0A385C2DC9DF43C1BC24BA64FF942346"><enum>(B)</enum><text display-inline="yes-display-inline">are geographically diverse and readily
accessible to eligible children; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H32C90B8484F149AB95E1CE06C4F2F4C4"><enum>(C)</enum><text>take into account
adequate representation of children of ethnic and racial minorities.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="H371A88CD32C642D000C007A951123F27"><enum>(3)</enum><header>Proposals</header><text display-inline="yes-display-inline">The Secretary shall accept proposals to
furnish pediatric palliative care under the demonstration projects from any
eligible provider at such time, in such manner, and in such form as the
Secretary may reasonably require.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H16689ADB19524DB097389DD512742FF4"><enum>(4)</enum><header>Facilitation of
evaluation</header><text display-inline="yes-display-inline">The Secretary
shall design the demonstration projects to facilitate the evaluation conducted
under subsection (e)(1).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H39A8E3322F6442928D102978F2BB6C9"><enum>(5)</enum><header>Duration</header><text display-inline="yes-display-inline">The Secretary shall complete the
demonstration projects within a period of 5 years that includes a period of 1
year during which the Secretary shall complete the evaluation under section
204.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H82CF668F985C49F5002497FDE1841300"><enum>(e)</enum><header>Waiver of
medicare requirements</header><text display-inline="yes-display-inline">The
Secretary shall waive compliance with such requirements of the Medicare program
to the extent and for the period the Secretary finds necessary to conduct the
demonstration projects.</text>
</subsection></section><section commented="no" display-inline="no-display-inline" id="HFB11B6B1194748F2BCFAF311AF5C86C0" section-type="subsequent-section"><enum>202.</enum><header>Private sector
pediatric palliative care demonstration projects</header>
<subsection commented="no" display-inline="no-display-inline" id="H7BD344C8C59647D1B2741C7589D8E39"><enum>(a)</enum><header>Definitions</header><text display-inline="yes-display-inline">In this section:</text>
<paragraph commented="no" display-inline="no-display-inline" id="H6C19528A35854E91826100C7C474AA16"><enum>(1)</enum><header>Care
coordination services</header><text>The term <term>care coordination
services</term> has the meaning given the term in section 201.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H5CD09A69F4084670B4EA2B9DA3CA5B1E"><enum>(2)</enum><header>Demonstration
project</header><text display-inline="yes-display-inline">The term
<term>demonstration project</term> means a demonstration project established by
the Secretary under subsection (b)(1).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H554ABD439E434BA3941FD9F3D05BE5AD"><enum>(3)</enum><header>Eligible
child</header><text display-inline="yes-display-inline">The term <term>eligible
child</term> means an individual with a life-threatening condition who
is—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="H3E9433943EC64388AF469B7471CE4255"><enum>(A)</enum><text display-inline="yes-display-inline">under 21 years of age;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H1780F662AE034B54004F47F3B9BEAB85"><enum>(B)</enum><text display-inline="yes-display-inline">enrolled for health benefits coverage under
an eligible health plan; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H56D8942F77CB43BF884E59001B936379"><enum>(C)</enum><text display-inline="yes-display-inline">not enrolled under (or entitled to)
benefits under a health plan described in paragraph (5)(C).</text>
</subparagraph></paragraph><paragraph id="H67151A33FD37414500A6EDFC91F42E3"><enum>(4)</enum><header>Eligible
provider</header><text>The term <term>eligible provider</term> has the meaning
given the term in section 201.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H713F1642EE6A4E8F8D849B42570022E8"><enum>(5)</enum><header>Eligible health
plan</header>
<subparagraph commented="no" display-inline="no-display-inline" id="H8813F5AFE9FD443F8CF7D0D0007B3EAE"><enum>(A)</enum><header>In
general</header><text display-inline="yes-display-inline">Subject to
subparagraphs (B) and (C), the term <term>eligible health plan</term> means an
individual or group plan that provides, or pays the cost of, medical care (as
such term is defined in section 2791 of the <act-name parsable-cite="PHSA">Public Health Service Act</act-name> (42 U.S.C.
300gg–91)).</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HDCD27BB7FD9A438AA476DCB4E1396272"><enum>(B)</enum><header>Types of plans
included</header><text display-inline="yes-display-inline">For purposes of
subparagraph (A), the term <term>eligible health plan</term> includes the
following health plans, and any combination thereof:</text>
<clause commented="no" display-inline="no-display-inline" id="HB7415D8B0E0F4D6DBD8F5BD109E0B618"><enum>(i)</enum><text display-inline="yes-display-inline">A group health plan (as defined in section
2791(a) of the <act-name parsable-cite="PHSA">Public Health Service
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/300gg-91">42 U.S.C. 300gg–91(a)</external-xref>)), but only if the plan—</text>
<subclause commented="no" display-inline="no-display-inline" id="H76E276FBA0844375B0A0CB72979D043F"><enum>(I)</enum><text display-inline="yes-display-inline">has 50 or more participants (as defined in
section 3(7) of the <act-name parsable-cite="ERISA">Employee Retirement Income
Security Act of 1974</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/29/1002">29 U.S.C. 1002(7)</external-xref>)); or</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="HD419E9B38E574C478EE30023874FB06F"><enum>(II)</enum><text display-inline="yes-display-inline">is administered by an entity other than the
employer who established and maintains the plan.</text>
</subclause></clause><clause commented="no" display-inline="no-display-inline" id="H7A898A2C345E4982A0CBC3EBB97518BE"><enum>(ii)</enum><text display-inline="yes-display-inline">A health insurance issuer (as defined in
section 2791(b) of the <act-name parsable-cite="PHSA">Public Health Service
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/300gg-91">42 U.S.C. 300gg–91(b)</external-xref>)).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H406BE6819EA94FE3888B4D729B05DDD0"><enum>(iii)</enum><text display-inline="yes-display-inline">A health maintenance organization (as
defined in section 2791(b) of the <act-name parsable-cite="PHSA">Public Health
Service Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/300gg-91">42 U.S.C. 300gg–91(b)</external-xref>)).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H9DAE881044A64A85A4443DD23BC40416"><enum>(iv)</enum><text display-inline="yes-display-inline">A long-term care policy, including a
nursing home fixed indemnity policy (unless the Secretary determines that such
a policy does not provide sufficiently comprehensive coverage of a benefit so
that the policy should be treated as a health plan).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H8612724283B1404EA377D8487F469777"><enum>(v)</enum><text display-inline="yes-display-inline">An employee welfare benefit plan or any
other arrangement which is established or maintained for the purpose of
offering or providing health benefits to the employees of 2 or more
employers.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H41977D6588B7439180A47E1EB868A0F5"><enum>(vi)</enum><text display-inline="yes-display-inline">Health benefits coverage provided under a
contract under the Federal employees health benefits program under chapter 89
of title 5, United States Code.</text>
</clause></subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H416FAC419F1C4DE483EDF1A269DC94B"><enum>(C)</enum><header>Types of plans
excluded</header><text display-inline="yes-display-inline">For purposes of
subparagraph (A), the term <term>eligible health plan</term> does not include
any of the following health plans:</text>
<clause commented="no" display-inline="no-display-inline" id="HE760E521006A402C9DA6F2FE247E12B7"><enum>(i)</enum><text display-inline="yes-display-inline">The Medicare program under title XVIII of
the <act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395 et seq.).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H0DF4770EF4934501B50064CAF94286EE"><enum>(ii)</enum><text display-inline="yes-display-inline">The Medicaid program under title XIX of the
<act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C. 1396 et
seq.).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H6B3E70942C1E465BBFD08DFFDF500F9"><enum>(iii)</enum><text display-inline="yes-display-inline">A Medicare supplemental policy (as defined
in section 1882(g)(1) of the <act-name parsable-cite="SSA">Social Security
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395ss">42 U.S.C. 1395ss et seq.</external-xref>).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H574A4A6ABABE4FC29F8F00D000942F8"><enum>(iv)</enum><text display-inline="yes-display-inline">The health care program for active military
personnel under title 10, United States Code.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H140BAAB7629649CEB4788CFC3022E674"><enum>(v)</enum><text display-inline="yes-display-inline">The veterans health care program under
<external-xref legal-doc="usc-chapter" parsable-cite="usc-chapter/38/17">chapter 17</external-xref> of title 38, United States Code.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="H14C5671D36CB402CAF9310AC5E1B975"><enum>(vi)</enum><text display-inline="yes-display-inline">The Civilian Health and Medical Program of
the Uniformed Services (CHAMPUS), as defined in <external-xref legal-doc="usc" parsable-cite="usc/10/1072">section 1072(4)</external-xref> of title 10,
United States Code.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="HDEE079D49BA64BAF8007592D27DBF700"><enum>(vii)</enum><text display-inline="yes-display-inline">The Indian health service program under the
<act-name parsable-cite="IHCIA">Indian Health Care Improvement Act</act-name>
(<external-xref legal-doc="usc" parsable-cite="usc/25/1601">25 U.S.C. 1601 et seq.</external-xref>).</text>
</clause></subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="H3FF1896A62B74097B1DCB7E38EEC28D6"><enum>(6)</enum><header>Eligible
organization</header><text display-inline="yes-display-inline">The term
<term>eligible organization</term> means an organization that provides health
benefits coverage under an eligible health plan.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H3945DB9166704844A3F3952304E353A"><enum>(7)</enum><header>Life-threatening
condition</header><text display-inline="yes-display-inline">The term
<term>life-threatening condition</term> has the meaning given the term in
section 201.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H8A167ED3E84C488B8989651CE5805BE"><enum>(8)</enum><header>Medicare
program</header><text display-inline="yes-display-inline">The term
<term>Medicare program</term> means the health benefits program under title
XVIII of the <act-name parsable-cite="SSA">Social Security Act</act-name> (42
U.S.C. 1395 et seq.).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HA9B34CD30361498AA9075500ECEF7EC5"><enum>(9)</enum><header>Pediatric
palliative care</header><text display-inline="yes-display-inline">The term
<term>pediatric palliative care</term> means services of the type to be
furnished under the demonstration projects under section 201, including care
coordination services.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H731492FECBB94F81B51BBDBD5F329B7"><enum>(10)</enum><header>Pediatric
palliative care consultation services</header><text display-inline="yes-display-inline">The term <term>pediatric palliative care
consultation services</term> means services of the type described in section
201(c)(3).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H9A4F8854491F44A1BB1EC753B3F6E2B2"><enum>(11)</enum><header>Secretary</header><text display-inline="yes-display-inline">The term <term>Secretary</term> means the
Secretary of Health and Human Services, acting through the Director of the
Agency for Healthcare Research and Quality.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H2C2CD4FBBB554B1EBD65B9904007F627"><enum>(b)</enum><header>Nonmedicare
pediatric palliative care demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="H4F9DC39AC7D9442FB223F15EB2D6F7F9"><enum>(1)</enum><header>Establishment</header><text display-inline="yes-display-inline">The Secretary shall establish demonstration
projects under this section at the same time as the Secretary establishes the
demonstration projects under section 201 and in accordance with the provisions
of this subsection to demonstrate the provision of pediatric palliative care
and pediatric palliative care consultation services to eligible children who
are not entitled to (or enrolled for) coverage under the health plans described
in subsection (a)(3)(C).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="HBFA2B314814B42C8821FEB36002C907E"><enum>(2)</enum><header>Participation</header>
<subparagraph commented="no" display-inline="no-display-inline" id="H941ACE4ABED34A27AAC1BC733EBD2B17"><enum>(A)</enum><header>Eligible
organizations</header><text display-inline="yes-display-inline">The Secretary
shall permit any eligible organization to participate in a demonstration
project on a voluntary basis.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H0BA61A32848B4C428726AA54EF93E45"><enum>(B)</enum><header>Eligible
children</header><text display-inline="yes-display-inline">Any eligible
organization participating in a demonstration project shall permit any eligible
child enrolled in an eligible health plan offered by the organization to
participate in such project on a voluntary basis.</text>
</subparagraph></paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H54714B5E5B3944D7811894DFBA0782B2"><enum>(c)</enum><header>Services under
demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="H19443F737F2C440584E087BF46253B11"><enum>(1)</enum><header>Provision of
pediatric palliative care and consultation services</header><text display-inline="yes-display-inline">Under a demonstration project, each
eligible organization electing to participate in the demonstration project
shall provide pediatric palliative care and pediatric palliative care
consultation services to each eligible child who is enrolled with the
organization and who elects to participate in the demonstration project. Under
the pediatric palliative care benefit, the following requirements shall
apply:</text>
<subparagraph commented="no" display-inline="no-display-inline" id="H493EF0F60E324211AEAD7C6BC994B1F1"><enum>(A)</enum><header>Waiver of
requirement to elect hospice care</header><text display-inline="yes-display-inline">Each eligible child may receive benefits
without an election under section 1812(d)(1) of the
<act-name parsable-cite="SSA">Social Security Act</act-name> (42 U.S.C.
1395d(d)(1)) to receive hospice care (as defined in section 1861(dd)(1) of such
Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x">42 U.S.C. 1395x(dd)(1)</external-xref>)) having been made with respect to the eligible
child.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HBB240DA8302E426697A985CA64DC6C50"><enum>(B)</enum><header>Authorization
for curative treatment</header><text display-inline="yes-display-inline">Each
eligible child may continue to receive benefits for disease and symptom
modifying treatment under the Medicare program.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H6BA6551D414D414185E7673F23B888C"><enum>(C)</enum><header>Provision of care
coordination services</header><text display-inline="yes-display-inline">Each
eligible child shall receive care coordination services (as defined in
subsection (a)(1)) and hospice care (as so defined) through an eligible
provider participating in a demonstration project, regardless of whether such
individual has been determined to be terminally ill (as defined in section
1861(dd)(3) of the <act-name parsable-cite="SSA">Social Security Act</act-name>
(<external-xref legal-doc="usc" parsable-cite="usc/42/1395x">42 U.S.C. 1395x(dd)(3)</external-xref>)).</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H3A44FC0FAC2749CAA346CF731712DE84"><enum>(D)</enum><header>Availability of
information on pediatric palliative care</header><text display-inline="yes-display-inline">Each eligible child and the family of such
child shall receive information and education in order to better understand the
utility of pediatric palliative care.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HD299E67E8A9A4A2BAEA085AB77458943"><enum>(E)</enum><header>Availability of
supportive and bereavement counseling</header><text display-inline="yes-display-inline">Each eligible child and the family of such
child shall receive supportive counseling and bereavement counseling, if
appropriate.</text>
</subparagraph><subparagraph id="HF1212E8EF5DE4053B851F26F88634FB"><enum>(F)</enum><header>Provision of
individual care</header><text>Each eligible child and the family of such child
shall receive appropriate care—</text>
<clause id="H3929BBBE133D4A3293159691E18978C2"><enum>(i)</enum><text>that
is designed to fit the child’s physical, cognitive, emotional, and spiritual
level of development that shall involve and respect both the child and the
family of such child;</text>
</clause><clause id="H4DB1A5738A9A406296D17F541CE7D33E"><enum>(ii)</enum><text>that is effective
and compassionate from diagnosis through death and bereavement;</text>
</clause><clause id="H3F6321178A10428E99E7D8A328D8DE51"><enum>(iii)</enum><text>that involves
and respects both the eligible child and the family of the eligible child;
and</text>
</clause><clause id="H28AF9C08BBC94300BE4926CF7950DA8E"><enum>(iv)</enum><text>in
which the family of the eligible child is a part of the care team.</text>
</clause></subparagraph><subparagraph id="H92443088D278487FA4BB88FA008F0094"><enum>(G)</enum><header>Professional
education</header><text>Each professional caring for an eligible child shall
have special responsibilities for educating themself and others about the
identification, management, and discussion of the last phase of a child’s fatal
medical problem.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H231E4962FBC6468C860447F38E465C3E"><enum>(H)</enum><header>Additional
benefits</header><text display-inline="yes-display-inline">Under the
demonstration projects, the Secretary may include any other item or service
that is consistent with the recommendations contained in the report published
in 2003 by the Institute of Medicine of the National Academy of Sciences
entitled <quote>When Children Die: Improving Palliative and End-of-Life Care
for Children and Their Families</quote>.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="H26911A3887934D9C94E2CE73BC8046E5"><enum>(2)</enum><header>Availability of
administrative grants</header>
<subparagraph commented="no" display-inline="no-display-inline" id="H41E483FD27854BB08DCD8F728CD085B4"><enum>(A)</enum><header>In
general</header><text display-inline="yes-display-inline">Subject to
subparagraph (B), the Secretary shall award grants to eligible organizations
electing to participate in a demonstration project for the administrative costs
incurred by the eligible organization in participating in the demonstration
project (including care coordination), including the costs of collecting and
submitting the data required to be submitted under subsection (d)(4)(B).</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H9A7F657F0B3245BD888FAFF5B211F9BA"><enum>(B)</enum><header>No payment for
services</header><text display-inline="yes-display-inline">The Secretary may
not pay eligible organizations for pediatric palliative care or pediatric
palliative care consultation services furnished under the demonstration
projects.</text>
</subparagraph></paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="H33AC753C34C842DEB148C679F1C1DFE5"><enum>(d)</enum><header>Conduct of
demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="HAD0BD9BAEAD2466788D5698B2B6EA030"><enum>(1)</enum><header>Sites</header><text display-inline="yes-display-inline">The Secretary shall conduct demonstration
projects in not less than 4, but not more than 8, sites.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H8022E9B41E26457EA544000000C8ECED"><enum>(2)</enum><header>Selection of
sites</header><text display-inline="yes-display-inline">The Secretary shall
select demonstration sites on the basis of proposals submitted under paragraph
(3) that are located in geographic areas that—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="H3B096B5404E84A70B041B402550001AC"><enum>(A)</enum><text display-inline="yes-display-inline">include both urban and rural eligible
organizations;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="H564278C61A124177AA80445046B2DDB"><enum>(B)</enum><text display-inline="yes-display-inline">are geographically diverse and readily
accessible to a significant number of eligible children; and</text>
</subparagraph><subparagraph id="H991B12B4D0934C2BA5C52376468C9B5D"><enum>(C)</enum><text>take into account
adequate representation of children of ethnic and racial minorities.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="HFF3C6C02336D4716960234233DD2D9EB"><enum>(3)</enum><header>Proposals</header>
<subparagraph commented="no" display-inline="no-display-inline" id="HEFA6152CDFA5408A96E34E9420D035C6"><enum>(A)</enum><header>In
general</header><text display-inline="yes-display-inline">The Secretary shall
accept proposals to furnish pediatric palliative care and pediatric palliative
care consultation services under the demonstration projects from any eligible
organization at such time, in such manner, and in such form as the Secretary
may require.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HE078062FF4C84DE0805FFF2217DFF28"><enum>(B)</enum><header>Application for
administrative grants</header><text display-inline="yes-display-inline">If the
eligible organization desires to receive an administrative grant under
subsection (c)(2), the proposal submitted under subparagraph (A) shall include
a request for the grant, specify the amount requested, and identify the
purposes for which the organization will use any funds made available under the
grant.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="H0FA4B69297A64523AE2EC319941B4D5F"><enum>(4)</enum><header>Collection and
submission of data</header>
<subparagraph commented="no" display-inline="no-display-inline" id="H155F8D6EB71F4021B8239F002B988553"><enum>(A)</enum><header>Collection</header><text display-inline="yes-display-inline">Each eligible organization participating in
a demonstration project shall collect such data as the Secretary may require to
facilitate the evaluation to be completed under section 204.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="HB0E55AE19BA1472B875629F09760BB6B"><enum>(B)</enum><header>Submission</header><text display-inline="yes-display-inline">Each eligible organization shall submit the
data collected under subparagraph (A) to the Secretary at such time, in such
manner, and in such form as the Secretary may require.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="H81E6528FC82B4343822273C34400DB6B"><enum>(5)</enum><header>Duration</header><text display-inline="yes-display-inline">The Secretary shall complete the
demonstration projects within a period of 5 years that includes a period of 1
year during which the Secretary shall complete the evaluation under section
204.</text>
</paragraph></subsection></section><section id="HA67EDE1E51AC436C8CBA6B358334F29"><enum>203.</enum><header>Symposium on
pediatric palliative care</header>
<subsection id="H17AE87863A114308AF8E8BA1E0FED7D8"><enum>(a)</enum><header>Convening a
symposium</header><text>The Secretary of Health and Human Services shall
convene a symposium on Pediatric Palliative Care (in this section referred to
as the <quote>symposium</quote>). The symposium shall occur not later than June
30, 2008.</text>
</subsection><subsection id="HC203BDE9679A4008B50049157467CEAE"><enum>(b)</enum><header>Purposes</header><text>The
purposes of the symposium shall be to—</text>
<paragraph id="H42A9E7C963F84FA5A0ACC264A27622D1"><enum>(1)</enum><text>assess the initial
response to the Institute of Medicine’s 2003 report on <quote>When Children
Die: Improving Palliative and End-of-Life Care for Children and Their
Families</quote>; and</text>
</paragraph><paragraph id="HC46BCC83BA5B4A699DC2B00090075C9"><enum>(2)</enum><text>increase awareness
of a child’s life-threatening condition or death on the child, the family of
the child, and society as a whole, and the importance of providing quality
pediatric palliative care to children with life-threatening conditions and the
families of such children in the United States.</text>
</paragraph></subsection><subsection id="HB953DFE5D3E347D08BDC2C6D8D37EE83"><enum>(c)</enum><header>Attendees</header><text>The
Secretary of Health and Human Services, or the designee of the Secretary, shall
attend the symposium along with other nongovernmental organizations, interested
parties, and clinicians.</text>
</subsection><subsection id="HDAE4D459D4C24EBA8EC48CE75BA3A1D9"><enum>(d)</enum><header>Report</header><text>The
symposium shall report to the Secretary of Health and Human Services and the
appropriate committees of Congress on recommendations derived from the
symposium and on the status of departmental research activities concerning
palliative care for children with life-threatening conditions.</text>
</subsection><subsection id="H28FFFEF120704960A2175EB7A52F3F23"><enum>(e)</enum><header>Authorization of
appropriations</header><text>There are authorized to be appropriated to carry
out this section $300,000 for fiscal year 2008.</text>
</subsection></section><section id="H80E91E2981FB45908BBE59A8BAFD64AA"><enum>204.</enum><header>Evaluation and
reports to Congress</header>
<subsection id="HD01B3FA8E3CC480B82F33E0096645DE2"><enum>(a)</enum><header>Evaluations</header><text>During
the 1-year period following the first 4 years of the demonstration projects,
the Secretary shall complete an evaluation of the demonstration projects using
outcomes in order—</text>
<paragraph id="H595CD4C8B8DD451DADA6F4CC0400C560"><enum>(1)</enum><text>to determine the
short-term and long-term costs and benefits of changing hospice care (as
defined in section 1861(dd)(1) of the Social Security Act (42 U.S.C.
1395x(dd)(1))) provided under the Medicare program to children, to
include—</text>
<subparagraph id="H0E8649DDF143456B96325B5068ED00DD"><enum>(A)</enum><text>the pediatric
palliative care furnished under the demonstration projects; and</text>
</subparagraph><subparagraph id="HC48D89B9D95448618DFF002D7EF607DB"><enum>(B)</enum><text>the Medicare
program to permit eligible children to receive curative and palliative care
simultaneously;</text>
</subparagraph></paragraph><paragraph id="H58B77CA603B648B1BDB019E4906679D1"><enum>(2)</enum><text>to review the
implementation of the demonstration projects compared to recommendations
contained in the report published in 2003 by the Institute of Medicine of the
National Academy of Sciences entitled <quote>When Children Die: Improving
Palliative and End-of-Life Care for Children and Their Families</quote>;</text>
</paragraph><paragraph id="H5D5601CE15A3408DAD555C5F94E8F933"><enum>(3)</enum><text>to determine the
quality and duration of palliative care for individuals who receive such care
under the demonstration projects who would not be eligible to receive such care
under the Medicare program;</text>
</paragraph><paragraph id="H1C50DDB1935144DB84B229AEAC13E899"><enum>(4)</enum><text>to determine
whether any increase in payments for pediatric palliative care is offset by
savings in other parts of the Medicare program; and</text>
</paragraph><paragraph id="H419A65AF38C147FEA6F4D5D5151892B3"><enum>(5)</enum><text>to determine the
projected cost of implementing the demonstration projects on a national
basis.</text>
</paragraph></subsection><subsection id="H805644CDF869415F00EC931B964B1657"><enum>(b)</enum><header>Reports</header>
<paragraph id="H61F06AD73E604E329B6CAE00B30037D9"><enum>(1)</enum><header>Interim
report</header><text>Not later than the date that is 2 years after the date on
which the demonstration projects are implemented, the Secretary shall submit an
interim report to Congress on the demonstration projects.</text>
</paragraph><paragraph id="H54640BD15BF8482690875DA51E33736C"><enum>(2)</enum><header>Final
report</header><text>Not later than the date that is 1 year after the date on
which the demonstration projects end, the Secretary shall submit a final report
to Congress on the demonstration projects that includes the results of the
evaluation conducted under paragraph (1) together with such recommendations for
legislation or administrative action as the Secretary determines is
appropriate.</text>
</paragraph></subsection></section><section commented="no" display-inline="no-display-inline" id="H456D6FA0860645C5A7A318ED7576BBB" section-type="subsequent-section"><enum>205.</enum><header>Authorization of
appropriations</header>
<subsection commented="no" display-inline="no-display-inline" id="HD959E1E724034229A889A34507674476"><enum>(a)</enum><header>In
general</header><text display-inline="yes-display-inline">There are authorized
to be appropriated—</text>
<paragraph commented="no" display-inline="no-display-inline" id="H97857DE583D24556B153A467A674BCAB"><enum>(1)</enum><text display-inline="yes-display-inline">$2,500,000, to carry out the demonstration
projects under section 201;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="H4F6D0AF0D2244138A6C9B4019002191"><enum>(2)</enum><text display-inline="yes-display-inline">$2,500,000, to carry out the demonstration
projects under section 202, including for awarding grants under subsection
(c)(2) of such section; and</text>
</paragraph><paragraph id="HE98F6E370C5B4CC884A4F53EA5585F89"><enum>(3)</enum><text>$300,000, to carry
out section 203.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="HF156C2665F5F49E68E1530D796001901"><enum>(b)</enum><header>Availability</header><text display-inline="yes-display-inline">Sums appropriated under subsection (a)
shall remain available without fiscal year limitation until expended.</text>
</subsection></section>