Pediatric Palliative Care Act of 2003

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.

(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

(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

(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.

(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.

(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-

(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