[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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