I 
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 sub-
sequently 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 Representa-
tives 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 EDU-
CATION 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 ‘el-
igible entity’ means a health care provider that is af-
filiated with an academic institution, that is pro-
viding comprehensive pediatric palliative care serv-
ices, alone or through an arrangement with another 
entity, and that has demonstrated experience in pro-
viding 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 condi-
tions; 
‘‘(B) pediatric hospices or hospices with 
significant pediatric palliative care programs; 
‘‘(C) home health agencies with a dem-
onstrated capacity to serve children with life-
threatening conditions and that provide pedi-
atric palliative care; and 
‘‘(D) any other entity that the Secretary 
determines is appropriate. 
‘‘(2) 
LIFE-THREATENING
CONDITION
DE-
FINED.—In this subsection, the term ‘life-threat-
ening 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 Se-
curity 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 ter-
minally 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 award-
ed 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 pro-
viding such care; 
‘‘(2) provide consultative services and guidance 
to health care providers that are developing and 
building comprehensive pediatric palliative care pro-
grams; 
‘‘(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 pallia-
tive care; 
‘‘(5) facilitate the development, assessment, and 
implementation of clinical practice guidelines and in-
stitutional protocols and procedures for pediatric 
palliative, end-of-life, and bereavement care; and
‘‘(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 con-
taining such information as the Administrator may re-
quire. 
‘‘(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 Na-
tional Institutes of Health is authorized to award training 
grants to eligible entities to expand the number of physi-
cians, 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 con-
taining such information as the Administrator may re-
quire. 
‘‘(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 Direc-
tor 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 re-
search to— 
(1) children’s hospitals or other hospitals serv-
ing a significant number of children with life-threat-
ening conditions; 
(2) pediatric departments of medical schools; 
(3) institutions currently participating in Na-
tional Institutes of Health network of pediatric 
pharmacological research units; and 
(4) hospices with pediatric palliative care pro-
grams 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 
PALLIA-
TIVE CARE DEMONSTRATION 
PROJECTS 
SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEM-
ONSTRATION PROJECTS. 
(a) DEFINITIONS.—In this section: 
(1) CARE COORDINATION SERVICES.—The term 
‘‘care coordination services’’ means services that pro-
vide for the coordination of, and assistance with, re-
ferral for medical and other services, including mul-
tidisciplinary care conferences, coordination with 
other providers involved in care of the eligible child, 
patient and family caregiver education and coun-
seling, and such other services as the Secretary de-
termines 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 sub-
section (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 pro-
viding 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 coun-
seling) for the immediate family of eligible 
children; 
(II) provides for such care and serv-
ices in eligible children’s homes, on an out-
patient basis, and on a short-term inpa-
tient basis, directly or under arrangements 
made by the agency or organization, except 
that—
(aa) the agency or organization 
must routinely provide directly sub-
stantially all of each of the services
cial Security Act (42 U.S.C. 
1395x(r)(1))); 
(bb) 1 registered profes-
sional nurse; and 
(cc) 1 social worker; 
employed by or, in the case of a physi-
cian described in item (aa), under 
contract with the agency or organiza-
tion, and also includes at least 1 pas-
toral or other counselor; 
(II) provides (or supervises the 
provision of) the care and services de-
scribed in such section 1861(dd)(1); 
and 
(III) establishes the policies gov-
erning 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 orga-
nization in any State in which State or ap-
plicable 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, under-
standable information about diagnosis, 
prognosis, treatments, and palliative care 
options; 
(viii) ensures that children and fami-
lies participate in effective and timely pre-
vention, assessment, and treatment of 
physical and psychological symptoms of 
distress; and 
(ix) meets such other requirements as 
the Secretary may find necessary in the in-
terest of the health and safety of the eligi-
ble children who are provided with pallia-
tive care by such agency or organization; 
and 
(B) any other individual or entity with an 
agreement under section 1866 of the Social Se-
curity Act (42 U.S.C. 1395cc) that—
(i) has demonstrated experience in 
providing interdisciplinary team-based pal-
liative care and care coordination services 
(as defined in paragraph (1)) to pediatric 
populations; and 
(ii) the Secretary determines is appro-
priate. 
(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 es-
tablish 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 pro-
vided 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 sec-
tion 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 serv-
ices 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 pallia-
tive 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 Se-
curity Act (42 U.S.C. 1395d(d)(1)) to re-
ceive hospice care (as defined in section
1861(dd)(1) of such Act (42 U.S.C. 
1395x(dd)(1))) having been made with re-
spect to the eligible child. 
(ii) AUTHORIZATION
FOR
CURATIVE 
TREATMENT.—Each eligible child may con-
tinue to receive benefits for disease and 
symptom modifying treatment under the 
medicare program. 
(iii) PROVISION OF CARE COORDINA-
TION SERVICES.—Each eligible child shall 
receive care coordination services (as de-
fined in subsection (a)(1)) and hospice 
care (as so defined) through an eligible 
provider participating in a demonstration 
project, regardless of whether such indi-
vidual has been determined to be termi-
nally 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 other-
wise be made under the medicare pro-
gram; and 
(II) that is consistent with the 
recommendations contained in the re-
port published in 2003 by the Insti-
tute 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 es-
tablish 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 sub-
clauses: 
(I) AMOUNT OF PAYMENT.—Sub-
ject to subclauses (II) and (III), the 
amount of payment for pediatric pal-
liative 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 be-
reavement counseling and care coordi-
nation services (as defined in sub-
section (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 pallia-
tive care and amounts paid for pedi-
atric palliative care under this sub-
paragraph 
shall 
not 
be 
counted 
against the cap amount described in 
such section. 
(III) SEPARATE
PAYMENT
FOR 
COUNSELING
SERVICES.—Notwith-
standing 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 appro-
priate adjustment in the monthly payments 
made under section 1853 of the Social Se-
curity Act (42 U.S.C. 1395w–23) to any 
Medicare+Choice organization that pro-
vides health care items or services to an el-
igible child who is participating in a dem-
onstration project. 
(3) COVERAGE OF PEDIATRIC PALLIATIVE CARE 
CONSULTATION
SERVICES.—Under the demonstra-
tion 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 demonstra-
tion project for services that are furnished by a phy-
sician who is either the medical director or an em-
ployee 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 fam-
ily of such individual with respect to the bene-
fits of pediatric palliative care and care options; 
and 
(C) if appropriate, advising the individual 
and the family of such individual regarding ad-
vanced care planning. 
(d) CONDUCT OF DEMONSTRATION PROJECTS.—
(1) SITES.—The Secretary shall conduct dem-
onstration 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 Sec-
retary shall design the demonstration projects to fa-
cilitate 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 pal-
liative care simultaneously; 
(B) to review the implementation of the 
demonstration 
projects 
compared 
to 
rec-
ommendations contained in the report published 
in 2003 by the Institute of Medicine of the Na-
tional 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 dem-
onstration projects that includes the results of 
the evaluation conducted under paragraph (1) 
together with such recommendations for legisla-
tion 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 demonstra-
tion 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 sub-
section (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) ben-
efits under a health plan described in para-
graph (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 ‘‘eligi-
ble 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 Serv-
ice 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 Em-
ployee Retirement Income Security 
Act of 1974 (29 U.S.C. 1002(7))); or 
(II) is administered by an entity 
other than the employer who estab-
lished and maintains the plan. 
(ii) A health insurance issuer (as de-
fined in section 2791(b) of the Public 
Health Service Act (42 U.S.C. 300gg–
91(b))). 
(iii) A health maintenance organiza-
tion (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 (un-
less the Secretary determines that such a 
policy does not provide sufficiently com-
prehensive 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 estab-
lished or maintained for the purpose of of-
fering or providing health benefits to the 
employees of 2 or more employers. 
(vi) Health benefits coverage provided 
under a contract under the Federal em-
ployees health benefits program under 
chapter 89 of title 5, United States Code. 
(C) TYPES
OF
PLANS
EXCLUDED.—For 
purposes of subparagraph (A), the term ‘‘eligi-
ble health plan’’ does not include any of the fol-
lowing 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 ac-
tive 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 pro-
gram under the Indian Health Care Im-
provement Act (25 U.S.C. 1601 et seq.). 
(4) ELIGIBLE ORGANIZATION.—The term ‘‘eligi-
ble organization’’ means an organization that pro-
vides 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 serv-
ices (as defined in subsection (a)(1) of such section).
(7) PEDIATRIC
PALLIATIVE
CARE
CONSULTA-
TION SERVICES.—The term ‘‘pediatric palliative care 
consultation services’’ means services of the type de-
scribed 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 es-
tablish demonstration projects under this section at 
the same time as the Secretary establishes the dem-
onstration projects under section 201 and in accord-
ance with the provisions of this subsection to dem-
onstrate the provision of pediatric palliative care and 
pediatric palliative care consultation services to eligi-
ble children who are not entitled to (or enrolled for) 
coverage under the health plans described in sub-
section (a)(3)(C). 
(2) PARTICIPATION.—
(A) ELIGIBLE ORGANIZATIONS.—The Sec-
retary shall permit any eligible organization to 
participate in a demonstration project on a vol-
untary basis.
(B) ELIGIBLE CHILDREN.—Any eligible or-
ganization participating in a demonstration 
project shall permit any eligible child enrolled in 
an eligible health plan offered by the organiza-
tion to participate in such project on a vol-
untary basis. 
(c) 
SERVICES
UNDER
DEMONSTRATION 
PROJECTS.—
(1) PROVISION OF PEDIATRIC PALLIATIVE CARE 
AND
CONSULTATION
SERVICES.—Under a dem-
onstration project, each eligible organization electing 
to participate in the demonstration project shall pro-
vide 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 subpara-
graph (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, in-
cluding the costs of collecting and submitting
the data required to be submitted under sub-
section (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 dem-
onstration 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 ac-
cept 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 sub-
section (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 organiza-
tion participating in a demonstration project 
shall collect such data as the Secretary may re-
quire to facilitate the evaluation to be com-
pleted under subsection (e)(1). 
(B) SUBMISSION.—Each eligible organiza-
tion shall submit the data collected under sub-
paragraph (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 partici-
pating in a demonstration project on the dem-
onstration 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 eli-
gible organization participating in a demonstra-
tion project on the demonstration projects that 
includes the results of the evaluation conducted 
under paragraph (1) together with such rec-
ommendations for legislation or administrative 
action as the Secretary determines is appro-
priate. 
SEC. 203. AUTHORIZATION OF APPROPRIATIONS. 
(a) IN GENERAL.—There are authorized to be appro-
priated—
(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 sub-
section (a) shall remain available, without fiscal year limi-
tation, until expended.
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