1.
Short title; table of contents
(a)
This Act may be cited as the
Children’s Compassionate Care Act of
2005
.
(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. Health professions
fellowships 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. 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="ID8D8A6F14B4EE461F83838E0920F78306" 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</external-xref> et seq.) is amended—</text>
<paragraph commented="no" display-inline="no-display-inline" id="IDA45816B325BB430C910081CDFEB0FF68">
<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="ID0AC8309DA0784429A6E10988487041BA">
<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="ID46C3E05B154148E0905D2F867D6146E9" style="OLC">
<section commented="no" display-inline="no-display-inline" id="ID7C1F75A9437347AA91C814AF9E18E9B2" 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="ID155D31FBC4704F0B83A9E1E77ECE9555">
<enum>(a)</enum>
<header>Establishment</header>
<text display-inline="yes-display-inline">The Secretary may award
grants to eligible entities to provide training in pediatric palliative care
and related services.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="IDFDA1F89B659743C886A22FF2DD4207F7">
<enum>(b)</enum>
<header>Eligible entity defined</header>
<paragraph commented="no" display-inline="no-display-inline" id="ID61BA0736A93E435B91221D5905918381">
<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 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="ID5FF381B0EB4042A18FFDC7005DBFEE56">
<enum>(A)</enum>
<text display-inline="yes-display-inline">children’s hospitals or
other hospitals or medical centers with significant capacity in caring for
children with life-threatening conditions;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="IDFE915D4AD21A4A02B6CE1E9FC58B26E1">
<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="ID2CB305BAEA8D43A6946F6D77EFEEA0F9">
<enum>(C)</enum>
<text display-inline="yes-display-inline">home health agencies with a
demonstrated 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="IDB68BDCC382E34079A7E873341C4D6507">
<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="ID82920B251D0E48C5AEFBA06C9100E04F">
<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(dd)(2)">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> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x(dd)(3)">42 U.S.C.
1395x(dd)(3)</external-xref>)).</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="ID81EA70C39BA14E41B7D8015338AF8FC1">
<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="IDEBD7FA4A85FE42BAA480BDCA05307C8E">
<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="ID98BF13F81F0D464891289EAF79A5C1B5">
<enum>(2)</enum>
<text display-inline="yes-display-inline">provide consultative
services and guidance to health care providers that are developing and building
comprehensive pediatric palliative care programs;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID8A3FCB94BE6B4757BBD47C00D4CB198F">
<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="ID4993695BC1524A4883F100F4F504DEFB">
<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="ID5D296261D2F94C8291AB67C9E5299EEB">
<enum>(5)</enum>
<text display-inline="yes-display-inline">facilitate the development,
assessment, and implementation of clinical practice guidelines and
institutional protocols and procedures for pediatric palliative, end-of-life,
and bereavement care; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID6F69C47E964E4417AEF3613B4BE8BF2E">
<enum>(6)</enum>
<text display-inline="yes-display-inline">assure that families of
children with life-threatening conditions are an integral part of these
processes.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="IDC24D18B02A3E49D29BBC447299CE0094">
<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 2006
through 2010.</text>
</subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
</paragraph></section><section commented="no" display-inline="no-display-inline" id="ID7F781662776641C78045FE37C15EB251" 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</external-xref> 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="IDA9580FF9E92846FBB83B00C8ACCD8D85" style="OLC">
<section commented="no" display-inline="no-display-inline" id="IDCA08793A940A424FA7777B00FFAFDB01" 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="ID4C52E9C4AC0A435A00004CC7D4F2A0C2">
<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="ID4CD55C7B10414042956E8CB5A24F90F8">
<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="ID0FA61297315A4864A87584576600AC04">
<enum>(1)</enum>
<text display-inline="yes-display-inline">children’s hospitals or
other hospitals with a capacity and ability to care for children with
life-threatening conditions;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID0C8589CC2DA14316B3A0226974511CD3">
<enum>(2)</enum>
<text display-inline="yes-display-inline">hospices with a
demonstrated capacity and ability to care for children with life-threatening
conditions and their families; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID4AD84FA3CC444D06BBB400EC06C80575">
<enum>(3)</enum>
<text display-inline="yes-display-inline">home health agencies
with—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="ID185A1947075D4F5581818C662BFCFD44">
<enum>(A)</enum>
<text display-inline="yes-display-inline">a demonstrated capacity and
ability to care for children with life-threatening conditions; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID271D67FCE74F456199934CC440472F4D">
<enum>(B)</enum>
<text display-inline="yes-display-inline">expertise in providing
palliative care.</text>
</subparagraph></paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="ID7C03FE1AA1AA4139B1D6DA31002BA966">
<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="ID10A61F06C60745A0BB229F0400002486">
<enum>(1)</enum>
<text display-inline="yes-display-inline">create new pediatric
palliative care programs;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID1FAA8A45DAB84E14B1C45B4697CA4406">
<enum>(2)</enum>
<text display-inline="yes-display-inline">start or expand needed
additional care settings, such as respite, hospice, inpatient day services, or
other care settings to provide a continuum of care across inpatient, home, and
community-based settings;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID7A98D55B2D2448488DD6226F1575C3F0">
<enum>(3)</enum>
<text display-inline="yes-display-inline">expand comprehensive
pediatric palliative care services, including care coordination services, to
greater numbers of children and broader service areas, including regional and
rural outreach; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID4BC057594A0B4C2189052BCB21401EC3">
<enum>(4)</enum>
<text display-inline="yes-display-inline">support communication
linkages and care coordination, telemedicine and teleconferencing, and measures
to improve patient safety.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="ID4A55A2860C7D4607BA92DB00B8233D4C">
<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="IDEF72055B7DA049D5B3C600F209498F26">
<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
2006 through 2010.</text>
</subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
</section><section commented="no" display-inline="no-display-inline" id="ID8BABE902C2C14872981457985B61A303" 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>
(<external-xref legal-doc="usc" parsable-cite="usc/42/281">42 U.S.C.
281</external-xref> 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="ID1E01BAE262B646BAA3AB629492995964" style="OLC">
<section commented="no" display-inline="no-display-inline" id="ID3CEBAD4E6173447487E9F342072CF575" section-type="subsequent-section">
<enum>404H.</enum>
<header>Pediatric palliative care training and residency
grants</header>
<subsection commented="no" display-inline="no-display-inline" id="ID7B3727474B7245EF8C2E00CBD0A838A9">
<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 pediatric palliative clinical training and
research experience.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="IDEDC973D891B447CE96B3C8ADB01F7077">
<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="ID356458F8A105432D94DD6C00913C8F33">
<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="ID7AE852CA33BF4D81A33E2E26BF3604B6">
<enum>(A)</enum>
<text display-inline="yes-display-inline">oncology;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID03468E3A28AD40A1AE969C67B4F7C906">
<enum>(B)</enum>
<text display-inline="yes-display-inline">virology;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID565C140175A1433FB2D562C47B313560">
<enum>(C)</enum>
<text display-inline="yes-display-inline">neurology; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID5C05E6D5DB0641BF8C988DAE24DF4ECB">
<enum>(D)</enum>
<text display-inline="yes-display-inline">psychiatry;</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="IDCE9DB06E413B4A5FBED8AF03CA8B22FF">
<enum>(2)</enum>
<text display-inline="yes-display-inline">a school of nursing;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID4CCBE14DA89145BE902F96B4F96FE673">
<enum>(3)</enum>
<text display-inline="yes-display-inline">a school of psychology and
social work; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="IDB90198AE639145BFA08C34E951897708">
<enum>(4)</enum>
<text display-inline="yes-display-inline">a children’s hospital or
other hospital with a significant number of pediatric patients with
life-threatening conditions.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="ID0EF76DD425B94288A7A847E203437004">
<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.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="ID243475579E9047DBA755813BBDADEF15">
<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 2006
through 2010.</text>
</subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
</section><section commented="no" display-inline="no-display-inline" id="ID7063F4441ECE467D99E1BE41040209FC" 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>
(<external-xref legal-doc="usc" parsable-cite="usc/42/280h">42 U.S.C.
280h</external-xref> 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="ID62DD5FB722944B25871768A31C1CBCAE" style="OLC">
<section commented="no" display-inline="no-display-inline" id="IDEF90E0668246413F836173B877001E5D" section-type="subsequent-section">
<enum>399Z–2.</enum>
<header>Model program grants</header>
<subsection commented="no" display-inline="no-display-inline" id="ID475F36D9F3554AC596DC32D3C91DF9AC">
<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 through the development of model
programs.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="ID92FEA6963BC143EBAACEC607C8950025">
<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 pediatric department of—</text>
<paragraph commented="no" display-inline="no-display-inline" id="ID1667E38D008C4A40A5CF132732CCFE11">
<enum>(1)</enum>
<text display-inline="yes-display-inline">a medical school;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="IDF31FD802FD5345AEBA4BD4E4D2BDAE50">
<enum>(2)</enum>
<text display-inline="yes-display-inline">a children’s hospital;
or</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="IDD788DB8106084448A9935EDC24E65B28">
<enum>(3)</enum>
<text display-inline="yes-display-inline">any other hospital with a
general pediatric or family practice residency program that serves a
significant number of pediatric patients with life-threatening
conditions.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="ID9AC1B84534ED44FEB8FB11C9F8EAF069">
<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.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="ID0DA3BEC6EAF645B9BC59299589B15FEF">
<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 2006
through 2010.</text>
</subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
</section><section commented="no" display-inline="no-display-inline" id="ID52864B0F51354A63B2D62014495961C4" section-type="subsequent-section">
<enum>105.</enum>
<header>Research</header>
<subsection commented="no" display-inline="no-display-inline" id="ID41B6293501FF4937A2D532F0169B86C9">
<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 translational research grants to fund
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="ID7785328467C84BFA9286271B25D6F7E3">
<enum>(1)</enum>
<text display-inline="yes-display-inline">pediatric pharmacological
research units;</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID0AAEC2FE42574133B1F841C29DDB3878">
<enum>(2)</enum>
<text display-inline="yes-display-inline">the general clinical research
centers; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID6B35D62330064F2B8F1D8B81CBC2BEF7">
<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="IDC342DD25B4F64741B040E858D312E29F">
<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 research to—</text>
<paragraph commented="no" display-inline="no-display-inline" id="ID2CD045C2FE9C43AB9C5F4431752C57DF">
<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="ID2778A97683D140F9003C2627C90074BB">
<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="ID6339A4FAFFA6441C9C1476126462A2EC">
<enum>(3)</enum>
<text display-inline="yes-display-inline">institutions currently
participating in National Institutes of Health network of pediatric
pharmacological research units; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID926F327B6BD044F09B7EF9F4B8BCB508">
<enum>(4)</enum>
<text display-inline="yes-display-inline">hospices with pediatric
palliative care programs and academic affiliations.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="ID7E1F915890594CB58E29227B191F00AF">
<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="IDE30E497757CD4194A7D03DED6215E200" section-type="subsequent-section">
<enum>201.</enum>
<header>Medicare pediatric palliative care demonstration
projects</header>
<subsection commented="no" display-inline="no-display-inline" id="ID3F1C12B6885C43E1A5E18FB76F9CA365">
<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="ID848ADB626E2A43CFB5B659ED312F11B2">
<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 medical and other services, including
multidisciplinary care conferences, coordination with other providers involved
in care of the eligible child, patient and family 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 individual.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="IDE40233FAED684ADAAA49D47DD5C3C84F">
<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="IDB5DB7E1CB63B41AFBD1BB1B2C7451EDA">
<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 18
years of age.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID0F61714E083E4BE9AA3E842900854741">
<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="IDEFF2BD5F5C6848779F7D26F236FA52E1">
<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="ID5669233288FC422485A99CD2A1BAB920">
<enum>(i)</enum>
<subclause commented="no" display-inline="yes-display-inline" id="ID3FCACD28566A47DA862E28A6A92C45AE"><enum>(I)</enum>
<text display-inline="yes-display-inline">is primarily engaged in
providing the care and services described in
<external-xref legal-doc="act" parsable-cite="SSA/1861(dd)(1)">section
1861(dd)(1)</external-xref> of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395(dd)(1)">42 U.S.C. 1395(dd)(1)</external-xref>) and
makes such services available (as needed) on a 24-hour basis and which also
provides counseling (including bereavement counseling) for the immediate family
of eligible children;</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="IDAE10B27FFFBA4D3985D6F85705A551B9" 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="ID50FB28B437B04B38B87CBFA640C7B637">
<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="IDA21A288DC1C844FF8004857989495423">
<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,
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="ID555021E6AA7C47AC9F739E1E5046D310" indent="up1">
<enum>(III)</enum>
<item commented="no" display-inline="yes-display-inline" id="ID0FF6122D00EB4AD6B87720DBB3C1FA00"><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="ID02A96E57F4034291B2324F39D209E03B" indent="up1">
<enum>(bb)</enum>
<text display-inline="yes-display-inline">simplifies access to
service;</text>
</item></subclause></clause><clause commented="no" display-inline="no-display-inline" id="IDD4D66D41F77144C0ABB70050D0F2243C">
<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>
</clause><clause commented="no" display-inline="no-display-inline" id="ID1BBCE6C3E3CA4281BA1B3F27F1D26C5B">
<enum>(dd)</enum>
<text display-inline="yes-display-inline">provides educational
opportunities relating to health care; and</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID680CEC4D114041F6BAEC38DEFBFC82EF">
<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="ID7FCAA9CFB2124BAD88A1333E8ED475FD">
<enum>(I)</enum>
<text display-inline="yes-display-inline">includes at least—</text>
<item commented="no" display-inline="no-display-inline" id="IDAA2D7E79DBEB4790B1E28C3BB34928B4">
<enum>(aa)</enum>
<text display-inline="yes-display-inline">1 physician (as defined in
<external-xref legal-doc="act" parsable-cite="SSA/1861(r)(1)">section
1861(r)(1)</external-xref> of the <act-name parsable-cite="SSA">Social Security
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x(r)(1)">42 U.S.C.
1395x(r)(1)</external-xref>));</text>
</item><item commented="no" display-inline="no-display-inline" id="IDA460823557E2485B8B84FE7284BD7B05">
<enum>(bb)</enum>
<text display-inline="yes-display-inline">1 registered professional
nurse; and</text>
</item><item commented="no" display-inline="no-display-inline" id="ID4F7A7B875417450DBAEB87AFB346D642">
<enum>(cc)</enum>
<text display-inline="yes-display-inline">1 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, and also includes at least 1 pastoral or other counselor;</continuation-text></subclause><subclause commented="no" display-inline="no-display-inline" id="IDE3C7063FC4F14361B469CFD6B091A4E3" 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="IDE37F45078E0445398815F7E74C214302" 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="ID619018B7F96349679363853C9F2404F9">
<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="ID2D07F12D4A88471A91C1605593A45205">
<enum>(iv)</enum>
<text display-inline="yes-display-inline">does not discontinue the
palliative care it provides with respect to an eligible 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="ID5AAFC66C64D2430A89BD53953F98F400">
<enum>(v)</enum>
<subclause commented="no" display-inline="yes-display-inline" id="ID24FA54F108AD42BB9B3BDC88EAB2DF2D"><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="ID32BB8829BE474EDA9F54B27989009F13" 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="IDB82FDDF217744E819FCB7304DB76AB53">
<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="ID702AE6ABF02C4C728449169D9212649D">
<enum>(vii)</enum>
<text display-inline="yes-display-inline">seeks to ensure that children
and 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="ID3F1B58FAD957463488E90356F6533674">
<enum>(viii)</enum>
<text display-inline="yes-display-inline">ensures that children and
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="ID1B8FE7BB087C46D0A299B7000092ACF8">
<enum>(ix)</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="IDF27BC85B66F54A3D9C6E5E5B15B98F77">
<enum>(B)</enum>
<text display-inline="yes-display-inline">any other individual or
entity with an agreement under
<external-xref legal-doc="act" parsable-cite="SSA/1866">section
1866</external-xref> 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="ID8911484D82A94288A006B5D8C818A629">
<enum>(i)</enum>
<text display-inline="yes-display-inline">has demonstrated experience
in providing interdisciplinary team-based palliative care and care coordination
services (as defined in paragraph (1)) to pediatric populations; and</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID35082BA697DB4D40B3F4FFE7A9AB2236">
<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="IDBD8720B4B9AE44DA004760CA831005BD">
<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(dd)(2)">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
<external-xref legal-doc="act" parsable-cite="SSA/1861(dd)(3)">section
1861(dd)(3)</external-xref> of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x(dd)(3)">42 U.S.C.
1395x(dd)(3)</external-xref>)).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID5AE97FDA986C46EBBACF73EDDE17BDBA">
<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> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395">42 U.S.C. 1395</external-xref> et
seq.).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID7EC696A900344E5B89FA49A11E09057F">
<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="IDEE8F1C5AF7B349789F072BB4CBDAE258">
<enum>(b)</enum>
<header>Pediatric palliative care demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="ID769627EC2156492A88584CF0D7DD6E9F">
<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="ID1428236DAC2C49C2B06F46EB2CC50030">
<enum>(2)</enum>
<header>Participation</header>
<subparagraph commented="no" display-inline="no-display-inline" id="IDBA2196DD69B84511BF12E4003F3CE7E1">
<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="ID34803A8434084A01AE156678CBC1132C">
<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="IDE6865B879B1145BBBF085044B2BD8289">
<enum>(c)</enum>
<header>Services under demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="ID2CE9622F64A8466B86E7C570C218BB51">
<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> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395f(i)">42 U.S.C.
1395f(i)</external-xref>) 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
<external-xref legal-doc="act" parsable-cite="SSA/1861(dd)(1)">section
1861(dd)(1)</external-xref> of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x(dd)(1)">42 U.S.C. 1395x(dd)(1)</external-xref>))
provided under the medicare program.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID8AAF38E3B28742D2BE4F771DEB845BF9">
<enum>(2)</enum>
<header>Coverage of pediatric palliative care</header>
<subparagraph commented="no" display-inline="no-display-inline" id="ID56BD43F19C334F8DAC0017FBD2AD94B8">
<enum>(A)</enum>
<header>In general</header>
<text display-inline="yes-display-inline">Notwithstanding
<external-xref legal-doc="act" parsable-cite="SSA/1862(a)(1)(C)">section
1862(a)(1)(C)</external-xref> of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395y(a)(1)(C)">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="ID1375ACFBC8984A5AA8CBD9B0982D2800">
<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="ID94065C8F7DF941E9B300DBF3FF44D7D8">
<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
<external-xref legal-doc="act" parsable-cite="SSA/1812(d)(1)">section
1812(d)(1)</external-xref> of the <act-name parsable-cite="SSA">Social Security
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395d(d)(1)">42 U.S.C. 1395d(d)(1)</external-xref>) to
receive hospice care (as defined in section 1861(dd)(1) of such Act
(<external-xref legal-doc="usc" parsable-cite="usc/42/1395x(dd)(1)">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="IDF3F1C638F7CE45A8B1A8C7D8EA392F39">
<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="ID1764EA7CC010483BB82CFEC43E21C9F8">
<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
<external-xref legal-doc="act" parsable-cite="SSA/1861(dd)(3)">section
1861(dd)(3)</external-xref> of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x(dd)(3)">42 U.S.C.
1395x(dd)(3)</external-xref>)).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="IDF049D5D4FD8644BD92B2CCEF0819C0CA">
<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="IDCFF4B251E50F49BB829682804CF3C781">
<enum>(v)</enum>
<header>Availability of bereavement counseling</header>
<text display-inline="yes-display-inline">Each family of an eligible
child shall receive bereavement counseling, if appropriate.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID76CE68E652F1461B9754E83EA1E6434B">
<enum>(vi)</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="ID5B54D9BF203149B3006D02F2D66BBA6C">
<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="ID923213780C8A441DABED5D6C19A85C07">
<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="ID7895B703C06C40F093CB46B39831DFE6">
<enum>(C)</enum>
<header>Payment</header>
<clause commented="no" display-inline="no-display-inline" id="ID597BC875E9A6449BA9414F55922E3B31">
<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 <external-xref legal-doc="act" parsable-cite="SSA/1861(dd)(1)">section
1861(dd)(1)</external-xref> of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x(dd)(1)">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(i)">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="ID6CC78E69CEB94DC2A1139FDC27EAD228">
<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
bereavement counseling and care coordination services (as defined in subsection
(a)(1)).</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="IDF316B57260C3441CA923BC52B94B88E1">
<enum>(II)</enum>
<header>Waiver of hospice cap</header>
<text display-inline="yes-display-inline">The limitation under
<external-xref legal-doc="act" parsable-cite="SSA/1814(i)(2)">section
1814(i)(2)</external-xref> of the <act-name parsable-cite="SSA">Social Security
Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395f(i)(2)">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="IDE822B27A59014DCD86ADBEAD42AAB13E">
<enum>(III)</enum>
<header>Separate payment for counseling services</header>
<text display-inline="yes-display-inline">Notwithstanding
<external-xref legal-doc="act" parsable-cite="SSA/1814(i)(1)(A)">section
1814(i)(1)(A)</external-xref> of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395f(i)(1)(A)">42 U.S.C.
1395f(i)(1)(A)</external-xref>), the Secretary may pay for bereavement
counseling as a separate service.</text>
</subclause></clause><clause commented="no" display-inline="no-display-inline" id="ID1DB8C903363E4EC8A5B2B55B97B8862C">
<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
<external-xref legal-doc="act" parsable-cite="SSA/1853">section
1853</external-xref> 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="ID33AF5BBB536E42E383B4476396038B00">
<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 who is either the
medical director or an employee of an eligible provider participating in such a
project and that consist of—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="IDE4A6EA15459B420481B0D233A347B100">
<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="ID659D6C13430641DBB3531E7BA854CAE3">
<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; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="IDFD78AC332E8D41C98C9E185E4B3999C6">
<enum>(C)</enum>
<text display-inline="yes-display-inline">if appropriate, advising the
individual and the family of such individual regarding advanced care
planning.</text>
</subparagraph></paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="ID0261EEA1FAE14FDC9FC696EFCFF4D58F">
<enum>(d)</enum>
<header>Conduct of demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="ID093311150C054E71A2780759FB531C54">
<enum>(1)</enum>
<header>Sites</header>
<text display-inline="yes-display-inline">The Secretary shall conduct
demonstration projects in at least 4, but not more than 8, sites.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID18C7819458DE430D95B4BDF2B9CD994B">
<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="ID3E8FC68E477F4A94A84BB687D697DEF0">
<enum>(A)</enum>
<text display-inline="yes-display-inline">include both urban and rural
eligible providers; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID0056EF2791B04BB000EF5962A9A38D5E">
<enum>(B)</enum>
<text display-inline="yes-display-inline">are geographically diverse
and readily accessible to a significant number of eligible children.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID44394FBF856D4FB7BA7658938E983E6C">
<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="ID960F9E555C764E50B0FC80F7FDD6AD6C">
<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="IDA8BFA7D4765945FEAD2949000241DBEB">
<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
subsection (e)(1).</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="IDD9F1A3A1C6F04AD9AD5891C415006E73">
<enum>(e)</enum>
<header>Evaluation and reports to Congress</header>
<paragraph commented="no" display-inline="no-display-inline" id="IDBA3C3B6D68D847CBB46379EBC9C75BAE">
<enum>(1)</enum>
<header>Evaluation</header>
<text display-inline="yes-display-inline">During the 1-year period
following the first 4 years of the demonstration projects, the Secretary shall
complete an evaluation of the demonstration projects in order—</text>
<subparagraph commented="no" display-inline="no-display-inline" id="ID72CD98DB1F5E40D68014B61911D00082">
<enum>(A)</enum>
<text display-inline="yes-display-inline">to determine the short-term
and long-term costs and benefits of changing—</text>
<clause commented="no" display-inline="no-display-inline" id="IDF746703FA9B440989D01D63B596D00B7">
<enum>(i)</enum>
<text display-inline="yes-display-inline">hospice care (as defined in
<external-xref legal-doc="act" parsable-cite="SSA/1861(dd)(1)">section
1861(dd)(1)</external-xref> of the <act-name parsable-cite="SSA">Social
Security Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/1395x(dd)(1)">42 U.S.C. 1395x(dd)(1)</external-xref>))
provided under the medicare program to children to include the pediatric
palliative care furnished under the demonstration projects; and</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID9A7E9A5FD4E448638F41E7B37B4CAC28">
<enum>(ii)</enum>
<text display-inline="yes-display-inline">the medicare program to
permit eligible children to receive curative and palliative care
simultaneously;</text>
</clause></subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID91CC543E47F34005A0E9977BE3729086">
<enum>(B)</enum>
<text display-inline="yes-display-inline">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>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID9636FC9DF0444E8E890532F6E03BF146">
<enum>(C)</enum>
<text display-inline="yes-display-inline">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>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="IDC9D75C0882074B30B99D008D81E27F28">
<enum>(D)</enum>
<text display-inline="yes-display-inline">whether any increase in
payments for pediatric palliative care is offset by savings in other parts of
the medicare program; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="IDDDE61850E86E4A3FA3C390E9D3DD9FCC">
<enum>(E)</enum>
<text display-inline="yes-display-inline">the projected cost of
implementing the demonstration projects on a national basis.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID6736DA7FB71B47DBADA654A4AAA4CE76">
<enum>(2)</enum>
<header>Reports</header>
<subparagraph commented="no" display-inline="no-display-inline" id="IDF6DB6AFB543444F99CF5D79C1CFB023C">
<enum>(A)</enum>
<header>Interim report</header>
<text display-inline="yes-display-inline">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>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="IDDD550E8EFB5346ED979F388513FEC906">
<enum>(B)</enum>
<header>Final report</header>
<text display-inline="yes-display-inline">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>
</subparagraph></paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="IDBFC88E79782E4CC2AF3BC5D0AC6F2B69">
<enum>(f)</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="IDBA9CA28F43A24B868E15AB88F2DA293F" 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="IDE89243D3D2B64977BD136FBFE192459D">
<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="ID32A18B9CBA13449200895705F423258C">
<enum>(1)</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="ID668AD9574D0E43ADA24C6D1EE11FDC6D">
<enum>(2)</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="ID6E967B9661C5433DB5E46CD5886DB4F2">
<enum>(A)</enum>
<text display-inline="yes-display-inline">under 18 years of age;</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID795066AEA5B644AA9EEB249044B3BD75">
<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="ID08A70DE3AFE141D4887F313CFA48501C">
<enum>(C)</enum>
<text display-inline="yes-display-inline">not enrolled under (or
entitled to) benefits under a health plan described in paragraph (3)(C).</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID702DD41B073545D5A1BD1286B5C52530">
<enum>(3)</enum>
<header>Eligible health plan</header>
<subparagraph commented="no" display-inline="no-display-inline" id="IDFAB529D4A59C45A99D53A22421AFAC2B">
<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 <external-xref legal-doc="act" parsable-cite="PHSA/2791">section
2791</external-xref> 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</external-xref>)).</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID8D1EC3A236AF46218358183FBC23C0E9">
<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="ID79EEEE321BDF4C3086231E5763F18DF5">
<enum>(i)</enum>
<text display-inline="yes-display-inline">A group health plan (as
defined in <external-xref legal-doc="act" parsable-cite="PHSA/2791(a)">section
2791(a)</external-xref> of the <act-name parsable-cite="PHSA">Public Health
Service Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/300gg-91(a)">42 U.S.C. 300gg–91(a)</external-xref>)), but
only if the plan—</text>
<subclause commented="no" display-inline="no-display-inline" id="ID99343148CE324138B0FA5CCEC1270064">
<enum>(I)</enum>
<text display-inline="yes-display-inline">has 50 or more participants
(as defined in <external-xref legal-doc="act" parsable-cite="ERISA/3(7)">section 3(7)</external-xref> 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(7)">29 U.S.C. 1002(7)</external-xref>)); or</text>
</subclause><subclause commented="no" display-inline="no-display-inline" id="IDD0B12BEB12FF4CBCAE8316B8F457F317">
<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="ID17BB093FB1F74FCDB7A9569679D40727">
<enum>(ii)</enum>
<text display-inline="yes-display-inline">A health insurance issuer (as
defined in <external-xref legal-doc="act" parsable-cite="PHSA/2791(b)">section
2791(b)</external-xref> of the <act-name parsable-cite="PHSA">Public Health
Service Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/300gg-91(b)">42 U.S.C.
300gg–91(b)</external-xref>)).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID9158A1F90A2A4478A44C5944816F7547">
<enum>(iii)</enum>
<text display-inline="yes-display-inline">A health maintenance
organization (as defined in
<external-xref legal-doc="act" parsable-cite="PHSA/2791(b)">section
2791(b)</external-xref> of the <act-name parsable-cite="PHSA">Public Health
Service Act</act-name> (<external-xref legal-doc="usc" parsable-cite="usc/42/300gg-91(b)">42 U.S.C.
300gg–91(b)</external-xref>)).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID09BAD199EC3845569CCC4224C203C658">
<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="ID57F1259248E84061B82CD36939E2971B">
<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="ID82E96117E7404F4FAAAF00DDD241C9D4">
<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="IDA4E63DB9E407460EB1CA6DED49CCCCB7">
<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="IDFF96E50576D14661AF2F6D92D1839067">
<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>
(<external-xref legal-doc="usc" parsable-cite="usc/42/1395">42 U.S.C.
1395</external-xref> et seq.).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="IDB3A915F50A4A4168BEFCB424EE00F457">
<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>
(<external-xref legal-doc="usc" parsable-cite="usc/42/1396">42 U.S.C.
1396</external-xref> et seq.).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID239D9B1D189048EBA531223E17D82EAF">
<enum>(iii)</enum>
<text display-inline="yes-display-inline">A medicare supplemental
policy (as defined in
<external-xref legal-doc="act" parsable-cite="SSA/1882(g)(1)">section
1882(g)(1)</external-xref> 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</external-xref> et seq.).</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID642ADF37DB5A4610B128E5AD16091629">
<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="ID3A79C8D6DE794350998580A9EBEE081C">
<enum>(v)</enum>
<text display-inline="yes-display-inline">The veterans health care
program under chapter 17 of title 38, United States Code.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID7410D4FC4F11466CA1C419BEBE620005">
<enum>(vi)</enum>
<text display-inline="yes-display-inline">The Civilian Health and
Medical Program of the Uniformed Services (CHAMPUS), as defined in section
1072(4) of title 10, United States Code.</text>
</clause><clause commented="no" display-inline="no-display-inline" id="ID76D588697F59437F911553FC644461B9">
<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</external-xref> et seq.).</text>
</clause></subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="IDFF8F4CA5FA8D4CC5B34C8DC369589451">
<enum>(4)</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="ID7ABFDBB48D75469698DD7D9FFE8245BE">
<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 under
section 201(a)(4).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID51F043AA5DC046CAB3403299CAA16FE8">
<enum>(6)</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
(as defined in subsection (a)(1) of such section).</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID88F35535F21144F09456F329A614D9DE">
<enum>(7)</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="ID96C4A88472C4418497EED03BD78F4EBA">
<enum>(8)</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="ID955634D79C334BD5A2C24B6535536C77">
<enum>(b)</enum>
<header>Nonmedicare pediatric palliative care demonstration
projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="ID002D5BAD82B04A26AF686E5F2C4EBD46">
<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="ID0E119D0FFD80476000C2BA342900278E">
<enum>(2)</enum>
<header>Participation</header>
<subparagraph commented="no" display-inline="no-display-inline" id="ID76E20731563641D18391DDF08F907034">
<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="IDD84A677B07684E649EFF13F897B5DCC7">
<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="IDC67ED99D09994B89BE5470B23ED337FD">
<enum>(c)</enum>
<header>Services under demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="ID6BFAD718E4634A138B6B00E5B960CD48">
<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.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="IDDC152F66335B49F7A3783CB3000288AF">
<enum>(2)</enum>
<header>Availability of administrative grants</header>
<subparagraph commented="no" display-inline="no-display-inline" id="ID4F2F732B3C834EA896D31CC0B3E457B8">
<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 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="ID2ECE11C94F7C446AADBFD52E2FEE008D">
<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="IDECEB5547ADC74DEFAB284C3643E7F463">
<enum>(d)</enum>
<header>Conduct of demonstration projects</header>
<paragraph commented="no" display-inline="no-display-inline" id="ID26EF026554A8438192FF57CF53D140AF">
<enum>(1)</enum>
<header>Sites</header>
<text display-inline="yes-display-inline">The Secretary shall conduct
demonstration projects in at least 4, but not more than 8, sites.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID0FA897A40C6248BA81FC9C4900602D01">
<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="IDAADF4F28B3A2481D9CEE745F659CCD00">
<enum>(A)</enum>
<text display-inline="yes-display-inline">include both urban and rural
eligible organizations; and</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="IDD74001B8B546449DA67000E3CFFBD491">
<enum>(B)</enum>
<text display-inline="yes-display-inline">are geographically diverse
and readily accessible to a significant number of eligible children.</text>
</subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID2622F93B1649458DB515120406199500">
<enum>(3)</enum>
<header>Proposals</header>
<subparagraph commented="no" display-inline="no-display-inline" id="ID96753F8F625B4F7B88D65D17A81DFDFF">
<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="ID06C3F50B001F4CF0A87EA53923595742">
<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="IDC513F0DAB5824C2A84C015E2445E8CC8">
<enum>(4)</enum>
<header>Collection and submission of data</header>
<subparagraph commented="no" display-inline="no-display-inline" id="ID8C3E0D56DC9243FC9E54E600E0FBBE3E">
<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
subsection (e)(1).</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID2EA5565E5E0C43510004F2CDC4BE28F5">
<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="ID15CA5DB1B8FB4353AECBF2DCECB37893">
<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
subsection (e)(1).</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="ID80ACB9B46E0A4DD8A2C3E7AB908CF03D">
<enum>(e)</enum>
<header>Evaluation and reports to Congress and eligible
organizations</header>
<paragraph commented="no" display-inline="no-display-inline" id="ID89424CF2A36B4316BE4B93C5875BF55D">
<enum>(1)</enum>
<header>Evaluation</header>
<text display-inline="yes-display-inline">During the 1-year period
following the first 4 years of the demonstration projects, the Secretary shall
complete an evaluation of the demonstration projects.</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID6C99B5F116634B51BA73BB3BCEDF24D8">
<enum>(2)</enum>
<header>Reports</header>
<subparagraph commented="no" display-inline="no-display-inline" id="ID0D336346AA70422A92977B8FAEB34F59">
<enum>(A)</enum>
<header>Interim report</header>
<text display-inline="yes-display-inline">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 and each eligible
organization participating in a demonstration project on the demonstration
projects.</text>
</subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="ID23D7D87B56D94DBAA79950506B35C966">
<enum>(B)</enum>
<header>Final report</header>
<text display-inline="yes-display-inline">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 and each eligible organization
participating in a demonstration project 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>
</subparagraph></paragraph></subsection></section><section commented="no" display-inline="no-display-inline" id="ID72922F36C7A04F3A82AC98E252A8F6FF" section-type="subsequent-section">
<enum>203.</enum>
<header>Authorization of appropriations</header>
<subsection commented="no" display-inline="no-display-inline" id="ID07670FA86C2441999709D4C45BA37FCE">
<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="ID68A84BD5A31D4CD4AB8005146B52EC15">
<enum>(1)</enum>
<text display-inline="yes-display-inline">$2,500,000, to carry out the
demonstration projects under section 201; and</text>
</paragraph><paragraph commented="no" display-inline="no-display-inline" id="ID9B3FD5DB25D94644AE65E48DE0C200E0">
<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.</text>
</paragraph></subsection><subsection commented="no" display-inline="no-display-inline" id="IDF628C7187B234CC0A2CC8C42F7EF2464">
<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>