Pediatric Palliative Care Act of 2003

        [Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3127 Introduced in House (IH)]

108th CONGRESS
1st Session
H. R. 3127

To improve the palliative and end-of-life care provided to children
with life-threatening conditions, and for other purposes.

_______________________________________________________________________

IN THE HOUSE OF REPRESENTATIVES

September 17, 2003

Ms. Pryce of Ohio (for herself and Mr. Murtha) introduced the following
bill; which was referred to the Committee on Energy and Commerce, and
in addition to the Committee on Ways and Means, for a period to be
subsequently determined by the Speaker, in each case for consideration
of such provisions as fall within the jurisdiction of the committee
concerned

_______________________________________________________________________

A BILL

To improve the palliative and end-of-life care provided to children
with life-threatening conditions, and for other purposes.

Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

(a) Short Title.--This Act may be cited as the ``Pediatric
Palliative Care Act of 2003''.
(b) Table of Contents.--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.

TITLE I--GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE SERVICES AND
RESEARCH

SEC. 101. EDUCATION AND TRAINING.

Subpart 2 of part E of title VII of the Public Health Service Act
(42 U.S.C. 295 et seq.) is amended--
(1) in section 770(a) by inserting ``except for section
771,'' after ``carrying out this subpart''; and
(2) by adding at the end the following:

``SEC. 771. PEDIATRIC PALLIATIVE CARE SERVICES EDUCATION AND TRAINING.

``(a) Establishment.--The Secretary may award grants to eligible
entities to provide training in pediatric palliative care and related
services.
``(b) Eligible Entity Defined.--
``(1) In general.--In this section the term `eligible
entity' 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--
``(A) children's hospitals or other hospitals or
medical centers with significant capacity in caring for
children with life-threatening conditions;
``(B) pediatric hospices or hospices with
significant pediatric palliative care programs;
``(C) home health agencies with a demonstrated
capacity to serve children with life-threatening
conditions and that provide pediatric palliative care;
and
``(D) any other entity that the Secretary
determines is appropriate.
``(2) Life-threatening condition defined.--In this
subsection, the term `life-threatening condition' has the
meaning given such term by the Secretary (in consultation with
hospice programs (as defined in section 1861(dd)(2) of the
Social Security Act (42 U.S.C. 1395x(dd)(2))) 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 Social Security Act (42
U.S.C. 1395x(dd)(3))).
``(c) Authorized Activities.--Grant funds awarded under subsection
(a) shall be used to--
``(1) provide short-term training and education programs in
pediatric palliative care for the range of interdisciplinary
health professionals and others providing such care;
``(2) provide consultative services and guidance to health
care providers that are developing and building comprehensive
pediatric palliative care programs;
``(3) develop regional information outreach and other
resources to assist clinicians and families in local and
outlying communities and rural areas;
``(4) develop or evaluate current curricula and educational
materials being used in providing such education and guidance
relating to pediatric palliative care;
``(5) 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
``(6) assure that families of children with life-
threatening conditions are an integral part of these processes.
``(d) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $5,000,000 for each of fiscal
years 2004 through 2008.''.

SEC. 102. GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE.

Part Q of title III of the Public Health Service Act (42 U.S.C.
280h et seq.) is amended by adding at the end the following:

``SEC. 399Z-1. GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE.

``(a) Establishment.--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.
``(b) Eligible Entity Defined.--In this section, the term `eligible
entity' means--
``(1) children's hospitals or other hospitals with a
capacity and ability to care for children with life-threatening
conditions;
``(2) hospices with a demonstrated capacity and ability to
care for children with life-threatening conditions and their
families; and
``(3) home health agencies with--
``(A) a demonstrated capacity and ability to care
for children with life-threatening conditions; and
``(B) expertise in providing palliative care.
``(c) Authorized Activities.--Grant funds awarded under subsection
(a) shall be used to--
``(1) create new pediatric palliative care programs;
``(2) 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;
``(3) 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
``(4) support communication linkages and care coordination,
telemedicine and teleconferencing, and measures to improve
patient safety.
``(d) Application.--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.
``(e) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $10,000,000 for each of fiscal
years 2004 through 2008.''.

SEC. 103. PEDIATRIC PALLIATIVE CARE TRAINING AND RESIDENCY GRANTS.

Part A of title IV of the Public Health Service Act (42 U.S.C. 281
et seq.) is amended by adding at the end the following:

``SEC. 404F. PEDIATRIC PALLIATIVE CARE TRAINING AND RESIDENCY GRANTS.

``(a) Establishment.--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.
``(b) Eligible Entity Defined.--In this section, the term `eligible
entity' means--
``(1) a pediatric department of a medical school and other
related departments including--
``(A) oncology;
``(B) virology;
``(C) neurology; and
``(D) psychiatry;
``(2) a school of nursing;
``(3) a school of psychology and social work; and
``(4) a children's hospital or other hospital with a
significant number of pediatric patients with life-threatening
conditions.
``(c) Application.--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.
``(d) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $5,000,000 for each of fiscal
years 2004 through 2008.''.

SEC. 104. MODEL PROGRAM GRANTS.

Part Q of title III of the Public Health Service Act (42 U.S.C.
280h et seq.), as amended by section 102, is further amended by adding
at the end the following:

``SEC. 399Z-2. MODEL PROGRAM GRANTS.

``(a) Establishment.--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.
``(b) Eligible Entity Defined.--In this section the term `eligible
entity' means a pediatric department of--
``(1) a medical school;
``(2) a children's hospital; or
``(3) any other hospital with a general pediatric or family
practice residency program that serves a significant number of
pediatric patients with life-threatening conditions.
``(c) Application.--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.
``(d) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $5,000,000 for each of fiscal
years 2004 through 2008.''.

SEC. 105. RESEARCH.

(a) Pain and Symptom Management.--The Director of the National
Institutes of Health (in this section referred to as the ``Director'')
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--
(1) pediatric pharmacological research units;
(2) the general clinical research centers; and
(3) other centers providing infrastructure for patient
oriented research.
(b) Eligible Entities.--In carrying out subsection (a), the
Director may award grants for the conduct of research to--
(1) children's hospitals or other hospitals serving a
significant number of children with life-threatening
conditions;
(2) pediatric departments of medical schools;
(3) institutions currently participating in National
Institutes of Health network of pediatric pharmacological
research units; and
(4) hospices with pediatric palliative care programs and
academic affiliations.
(c) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $10,000,000, to remain available
until expended.

TITLE II--PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS

SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS.

(a) Definitions.--In this section:
(1) Care coordination services.--The term ``care
coordination services'' 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.
(2) Demonstration project.--The term ``demonstration
project'' means a demonstration project established by the
Secretary under subsection (b)(1).
(3) Eligible child.--The term ``eligible child'' 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.
(4) Eligible provider.--The term ``eligible provider''
means--
(A) a pediatric palliative care program that is a
public agency or private organization (or a subdivision
thereof) which--
(i)(I) is primarily engaged in providing
the care and services described in section
1861(dd)(1) of the Social Security Act (42
U.S.C. 1395(dd)(1)) 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;
(II) 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--
(aa) 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);
(bb) 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
(III)(aa) identifies medical, community,
and social service needs;
(bb) simplifies access to service;
(cc) uses the full range of community
resources, including the friends and family of
the eligible child; and
(dd) provides educational opportunities
relating to health care; and
(ii) has an interdisciplinary group of
personnel which--
(I) includes at least--
(aa) 1 physician (as
defined in section 1861(r)(1)
of the Social Security Act (42
U.S.C. 1395x(r)(1)));
(bb) 1 registered
professional nurse; and
(cc) 1 social worker;
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;
(II) provides (or supervises the
provision of) the care and services
described in such section 1861(dd)(1);
and
(III) establishes the policies
governing the provision of such care
and services;
(iii) maintains central clinical records on
all patients;
(iv) 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;
(v)(I) 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
(II) 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;
(vi) 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;
(vii) seeks to ensure that children and
families receive complete, timely,
understandable information about diagnosis,
prognosis, treatments, and palliative care
options;
(viii) ensures that children and families
participate in effective and timely prevention,
assessment, and treatment of physical and
psychological symptoms of distress; and
(ix) 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
(B) any other individual or entity with an
agreement under section 1866 of the Social Security Act
(42 U.S.C. 1395cc) that--
(i) has demonstrated experience in
providing interdisciplinary team-based
palliative care and care coordination services
(as defined in paragraph (1)) to pediatric
populations; and
(ii) the Secretary determines is
appropriate.
(5) Life-threatening condition.--The term ``life-
threatening condition'' has the meaning given such term by the
Secretary (in consultation with hospice programs (as defined in
section 1861(dd)(2) of the Social Security Act (42 U.S.C.
1395x(dd)(2))) 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 Social Security Act (42 U.S.C.
1395x(dd)(3))).
(6) Medicare program.--The term ``medicare program'' means
the health benefits program under title XVIII of the Social
Security Act (42 U.S.C. 1395 et seq.).
(7) Secretary.--The term ``Secretary'' means the Secretary
of Health and Human Services.
(b) Pediatric Palliative Care Demonstration Projects.--
(1) Establishment.--The Secretary shall establish
demonstration projects in accordance with the provisions of
this subsection to provide pediatric palliative care to
eligible children.
(2) Participation.--
(A) Eligible providers.--Any eligible provider may
furnish items or services covered under the pediatric
palliative care benefit.
(B) Eligible children.--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.
(c) Services Under Demonstration Projects.--
(1) In general.--Except as otherwise provided in this
subsection, the provisions of section 1814(i) of the Social
Security Act (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 Social Security Act (42 U.S.C. 1395x(dd)(1))) provided
under the medicare program.
(2) Coverage of pediatric palliative care.--
(A) In general.--Notwithstanding section
1862(a)(1)(C) of the Social Security Act (42 U.S.C.
1395y(a)(1)(C)), 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).
(B) Benefit.--Under the pediatric palliative care
benefit, the following requirements shall apply:
(i) Waiver of requirement to elect hospice
care.--Each eligible child may receive benefits
without an election under section 1812(d)(1) of
the Social Security Act (42 U.S.C. 1395d(d)(1))
to receive hospice care (as defined in section
1861(dd)(1) of such Act (42 U.S.C.
1395x(dd)(1))) having been made with respect to
the eligible child.
(ii) Authorization for curative
treatment.--Each eligible child may continue to
receive benefits for disease and symptom
modifying treatment under the medicare program.
(iii) Provision of care coordination
services.--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 Social Security Act
(42 U.S.C. 1395x(dd)(3))).
(iv) Availability of information on
pediatric palliative care.--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.
(v) Availability of bereavement
counseling.--Each family of an eligible child
shall receive bereavement counseling, if
appropriate.
(vi) Additional benefits.--Under the
demonstration projects, the Secretary may
include any other item or service--
(I) for which payment may otherwise
be made under the medicare program; and
(II) 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 ``When Children Die:
Improving Palliative and End-of-Life
Care for Children and Their Families''.
(C) Payment.--
(i) Establishment of payment methodology.--
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 Social Security Act (42
U.S.C. 1395x(dd)(1))) under section 1814(i) of
such Act (42 U.S.C. 1395f(i)), except as
provided in the following subclauses:
(I) Amount of payment.--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)).
(II) Waiver of hospice cap.--The
limitation under section 1814(i)(2) of
the Social Security Act (42 U.S.C.
1395f(i)(2)) 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.
(III) Separate payment for
counseling services.--Notwithstanding
section 1814(i)(1)(A) of the Social
Security Act (42 U.S.C.
1395f(i)(1)(A)), the Secretary may pay
for bereavement counseling as a
separate service.
(ii) Special rules for payment of
medicare+choice organizations.--The Secretary
shall establish procedures under which the
Secretary provides for an appropriate
adjustment in the monthly payments made under
section 1853 of the Social Security Act (42
U.S.C. 1395w-23) to any Medicare+Choice
organization that provides health care items or
services to an eligible child who is
participating in a demonstration project.
(3) Coverage of pediatric palliative care consultation
services.--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--
(A) an evaluation of the individual's need for pain
and symptom management, including the need for
pediatric palliative care;
(B) counseling the individual and the family of
such individual with respect to the benefits of
pediatric palliative care and care options; and
(C) if appropriate, advising the individual and the
family of such individual regarding advanced care
planning.
(d) Conduct of Demonstration Projects.--
(1) Sites.--The Secretary shall conduct demonstration
projects in at least 4, but not more than 8, sites.
(2) Selection of sites.--The Secretary shall select
demonstration sites on the basis of proposals submitted under
paragraph (3) that are located in geographic areas that--
(A) include both urban and rural eligible
providers; and
(B) are geographically diverse and readily
accessible to a significant number of eligible
children.
(3) Proposals.--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.
(4) Facilitation of evaluation.--The Secretary shall design
the demonstration projects to facilitate the evaluation
conducted under subsection (e)(1).
(5) Duration.--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).
(e) Evaluation and Reports to Congress.--
(1) Evaluation.--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--
(A) to determine the short-term and long-term costs
and benefits of changing--
(i) 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 the
pediatric palliative care furnished under the
demonstration projects; and
(ii) the medicare program to permit
eligible children to receive curative and
palliative care simultaneously;
(B) 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 ``When Children Die: Improving
Palliative and End-of-Life Care for Children and Their
Families'';
(C) 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;
(D) whether any increase in payments for pediatric
palliative care is offset by savings in other parts of
the medicare program; and
(E) the projected cost of implementing the
demonstration projects on a national basis.
(2) Reports.--
(A) Interim report.--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.
(B) Final report.--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.
(f) Waiver of Medicare Requirements.--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.

SEC. 202. PRIVATE SECTOR PEDIATRIC PALLIATIVE CARE DEMONSTRATION
PROJECTS.

(a) Definitions.--In this section:
(1) Demonstration project.--The term ``demonstration
project'' means a demonstration project established by the
Secretary under subsection (b)(1).
(2) Eligible child.--The term ``eligible child'' means an
individual with a life-threatening condition who is--
(A) under 18 years of age;
(B) enrolled for health benefits coverage under an
eligible health plan; and
(C) not enrolled under (or entitled to) benefits
under a health plan described in paragraph (3)(C).
(3) Eligible health plan.--
(A) In general.--Subject to clauses (ii) and (iii),
the term ``eligible health plan'' 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 Public Health Service Act (42 U.S.C. 300gg-91)).
(B) Types of plans included.--For purposes of
subparagraph (A), the term ``eligible health plan''
includes the following health plans, and any
combination thereof:
(i) A group health plan (as defined in
section 2791(a) of the Public Health Service
Act (42 U.S.C. 300gg-91(a))), but only if the
plan--
(I) has 50 or more participants (as
defined in section 3(7) of the Employee
Retirement Income Security Act of 1974
(29 U.S.C. 1002(7))); or
(II) is administered by an entity
other than the employer who established
and maintains the plan.
(ii) A health insurance issuer (as defined
in section 2791(b) of the Public Health Service
Act (42 U.S.C. 300gg-91(b))).
(iii) A health maintenance organization (as
defined in section 2791(b) of the Public Health
Service Act (42 U.S.C. 300gg-91(b))).
(iv) 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).
(v) 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.
(vi) Health benefits coverage provided
under a contract under the Federal employees
health benefits program under chapter 89 of
title 5, United States Code.
(C) Types of plans excluded.--For purposes of
subparagraph (A), the term ``eligible health plan''
does not include any of the following health plans:
(i) The medicare program under title XVIII
of the Social Security Act (42 U.S.C. 1395 et
seq.).
(ii) The medicaid program under title XIX
of the Social Security Act (42 U.S.C. 1396 et
seq.).
(iii) A medicare supplemental policy (as
defined in section 1882(g)(1) of the Social
Security Act (42 U.S.C. 1395ss et seq.).
(iv) The health care program for active
military personnel under title 10, United
States Code.
(v) The veterans health care program under
chapter 17 of title 38, United States Code.
(vi) The Civilian Health and Medical
Program of the Uniformed Services (CHAMPUS), as
defined in section 1072(4) of title 10, United
States Code.
(vii) The Indian health service program
under the Indian Health Care Improvement Act
(25 U.S.C. 1601 et seq.).
(4) Eligible organization.--The term ``eligible
organization'' means an organization that provides health
benefits coverage under an eligible health plan.
(5) Life-threatening condition.--The term ``life-
threatening condition'' has the meaning given such term under
section 201(a)(4).
(6) Pediatric palliative care.--The term ``pediatric
palliative care'' 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).
(7) Pediatric palliative care consultation services.--The
term ``pediatric palliative care consultation services'' means
services of the type described in section 201(c)(3).
(8) Secretary.--The term ``Secretary'' means the Secretary
of Health and Human Services, acting through the Director of
the Agency for Healthcare Research and Quality.
(b) Nonmedicare Pediatric Palliative Care Demonstration Projects.--
(1) Establishment.--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).
(2) Participation.--
(A) Eligible organizations.--The Secretary shall
permit any eligible organization to participate in a
demonstration project on a voluntary basis.
(B) Eligible children.--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.
(c) Services Under Demonstration Projects.--
(1) Provision of pediatric palliative care and consultation
services.--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.
(2) Availability of administrative grants.--
(A) In general.--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).
(B) No payment for services.--The Secretary may not
pay eligible organizations for pediatric palliative
care or pediatric palliative care consultation services
furnished under the demonstration projects.
(d) Conduct of Demonstration Projects.--
(1) Sites.--The Secretary shall conduct demonstration
projects in at least 4, but not more than 8, sites.
(2) Selection of sites.--The Secretary shall select
demonstration sites on the basis of proposals submitted under
paragraph (3) that are located in geographic areas that--
(A) include both urban and rural eligible
organizations; and
(B) are geographically diverse and readily
accessible to a significant number of eligible
children.
(3) Proposals.--
(A) In general.--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.
(B) Application for administrative grants.--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.
(4) Collection and submission of data.--
(A) Collection.--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).
(B) Submission.--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.
(5) Duration.--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).
(e) Evaluation and Reports to Congress and Eligible
Organizations.--
(1) Evaluation.--During the 1-year period following the
first 4 years of the demonstration projects, the Secretary
shall complete an evaluation of the demonstration projects.
(2) Reports.--
(A) Interim report.--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.
(B) Final report.--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.

SEC. 203. AUTHORIZATION OF APPROPRIATIONS.

(a) In General.--There are authorized to be appropriated--
(1) $2,500,000, to carry out the demonstration projects
under section 201; and
(2) $2,500,000, to carry out the demonstration projects
under section 202, including for awarding grants under
subsection (c)(2) of such section.
(b) Availability.--Sums appropriated under subsection (a) shall
remain available, without fiscal year limitation, until expended.
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