108th CONGRESS
1st Session
S. 1629
To improve the palliative and end-of-life care provided to children
with life-threatening conditions, and for other purposes.
IN THE SENATE OF THE UNITED STATES
September 17, 2003
Mr. DEWINE (for himself and Mr. DODD) introduced the following bill; which
was read twice and referred to the Committee on Health, Education, Labor,
and Pensions
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 `Children's Compassionate 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.
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--
`(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--
`(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--
(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.
(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'.
(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.
(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).
(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.
(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.
(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.
END
