[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 9002 Introduced in House (IH)]

<DOC>






116th CONGRESS
  2d Session
                                H. R. 9002

  To amend title XIX of the Social Security Act to provide States an 
option to cover a children's program of all-inclusive coordinated care 
                   (ChiPACC) under Medicaid program.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           December 17, 2020

Ms. DeGette (for herself and Mr. McCaul) introduced the following bill; 
       which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
  To amend title XIX of the Social Security Act to provide States an 
option to cover a children's program of all-inclusive coordinated care 
                   (ChiPACC) under Medicaid program.

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

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``ChiPACC Act of 2020''.

SEC. 2. FINDINGS.

    Congress finds that--
            (1) serious illnesses and health conditions that are 
        potentially life-threatening place significant stress on both 
        the child and family;
            (2) palliative care relieves children's symptoms such as 
        pain, fatigue, anxiety, nausea, and sleep problems, and may be 
        provided at any age or stage of serious illness, and has been 
        shown to enhance the quality of life for both the child and 
        family;
            (3) under the existing model under the Medicaid program 
        under title XIX of the Social Security Act (42 U.S.C. 1396 et 
        seq.), eligible children diagnosed with potentially life-
        limiting illnesses are limited to receiving hospice services 
        only after they have been given a prognosis of six months to 
        live. There remain many critical barriers to end-of-life care 
        under the current health care system, including reluctance of 
        medical professionals and families to acknowledge a limited 
        life expectancy;
            (4) such model offers discrete services, which can be 
        difficult to navigate, while the qualifications for coverage 
        under the Medicaid program can block access to critical care;
            (5) the Children's Program of All-inclusive Coordinated 
        Care (referred to in this Act as ``ChiPACC'') provides all-
        inclusive care for children with life-threatening conditions 
        and their families from the time of diagnosis and--
                    (A) fills a gap in coverage under the Medicaid 
                program of integrated, multi-disciplinary services that 
                are reasonable and necessary for the palliation and 
                management of seriously ill children;
                    (B) serves a population that includes children who 
                are not yet hospice eligible; and
                    (C) provides greater coordination of palliative and 
                curative services for children throughout the course of 
                their illness or condition, which may begin at the time 
                of diagnosis;
            (6) some States have opted to provide services targeted to 
        this population through waivers under subsections (b) and (c) 
        of section 1915 of the Social Security Act (42 U.S.C. 1396n), 
        each of which requires the approval of the Centers for Medicare 
        & Medicaid Services of the initial waiver application and any 
        subsequent renewal of such waiver;
            (7) since 2005, the Secretary of Health and Human Services 
        has approved home and community-based service waivers under 
        section 1915(c) of such Act (42 U.S.C. 1396n(c)) to operate 
        ChiPACC in five States;
            (8) in States operating ChiPACC under such a waiver--
                    (A) the respective State's Medicaid program 
                achieved significant cost savings through a reduction 
                in inpatient care and an increase in less expensive 
                outpatient care;
                    (B) access to such services in such States reduced 
                more costly utilizations of other services; and
                    (C) services provided through ChiPACC are less 
                costly to the State's Medicaid program because ChiPACC 
                facilitates children receiving palliative care at home 
                rather than receiving such services in an inpatient 
                hospital setting; and
            (9) allowing States the option to implement ChiPACC through 
        a State plan amendment would--
                    (A) give States the ability to make such program a 
                part of a State's Medicaid program while avoiding the 
                lengthy waiver process; and
                    (B) give States the flexibility to establish and 
                design its program to fit the needs of the respective 
                State.

SEC. 3. OPTIONAL MEDICAID COVERAGE OF CHILDREN'S PROGRAM OF ALL-
              INCLUSIVE COORDINATED CARE.

    (a) Children's Program of All-Inclusive Coordinated Care.--Title 
XIX of the Social Security Act is amended by inserting after section 
1946 (42 U.S.C. 1396w-5) the following new section:

``SEC. 1947. CHILDREN'S PROGRAM OF ALL-INCLUSIVE COORDINATED CARE.

    ``(a) State Option.--
            ``(1) In general.--Beginning on January 1, 2021, a State, 
        at its option as a State plan amendment, may elect to provide 
        for medical assistance under this title to ChiPACC-eligible 
        individuals who choose to enroll in a children's program of 
        all-inclusive coordinated care. In the case of an individual 
        who chooses to enroll in such a program pursuant to such an 
        election--
                    ``(A) the individual shall receive ChiPACC benefits 
                in addition to other services under the State plan; and
                    ``(B) the health care providers furnishing services 
                under such program shall receive payment for providing 
                such services in accordance with the terms of the State 
                plan.
            ``(2) Numerical and geographical limitations permitted.--A 
        State may establish--
                    ``(A) a numerical limit on the number of 
                individuals who may be enrolled in the State's ChiPACC; 
                or
                    ``(B) geographic limitations on the service areas 
                for a ChiPACC.
            ``(3) Process for determining eligible individuals.--If a 
        State elects to establish a limitation under paragraph (2), the 
        State shall establish a process for determining criteria for 
        which individuals who may be enrolled in the State's ChiPACC.
    ``(b) ChiPACC and Other Terms Defined.--In this section:
            ``(1) Children's program of all-inclusive coordinated care; 
        chipacc.--The terms `children's program of all-inclusive 
        coordinated care' and `ChiPACC' mean a program of coordinated 
        care for ChiPACC-eligible children that is established by a 
        State under this section and meets the following requirements:
                    ``(A) Operation.--The State administering agency 
                may provide for the operation of the program through 
                arrangements between one or more other entities that 
                will serve as ChiPACC coordinators (as defined in 
                paragraph (3)).
                    ``(B) Comprehensive benefits.--
                            ``(i) In general.--The program provides 
                        comprehensive health care items and services to 
                        ChiPACC-eligible individuals (as defined in 
                        paragraph (2)) in accordance with this section.
                            ``(ii) Scope and plan for services.--Such 
                        items and services shall--
                                    ``(I) include items and services 
                                described in subsection (c)(1)(A) to 
                                the extent such items and services are 
                                reasonable and necessary, as determined 
                                by the State, for the palliation and 
                                management of the CHIPACC-eligible 
                                individual's serious illness or 
                                condition; and
                                    ``(II) be provided consistent with 
                                a comprehensive care plan developed by 
                                an interdisciplinary health 
                                professional team (as defined in 
                                paragraph (4)).
                            ``(iii) Qualifications of providers.--Such 
                        items and services are provided through health 
                        care providers that--
                                    ``(I) meet such certification or 
                                other Federal or State requirements as 
                                may be necessary to participate in the 
                                program of medical assistance under 
                                this title or in the program under 
                                title XVIII; and
                                    ``(II) maintain records on ChiPACC-
                                eligible individuals enrolled in the 
                                program and to whom the provider 
                                furnishes services, reflecting both the 
                                specific care and services furnished by 
                                the provider and the relationship of 
                                those services to the comprehensive 
                                plan of care for that individual and to 
                                the delivery of other services.
            ``(2) ChiPACC-eligible individual.--The term `ChiPACC-
        eligible individual' means, with respect to a ChiPACC, an 
        individual--
                    ``(A) who, at the time of enrollment in the 
                ChiPACC, is under 21 years of age;
                    ``(B) who resides in the service area of a ChiPACC, 
                as defined by the State administering agency;
                    ``(C) who is eligible for medical assistance under 
                the State plan without regard to this section;
                    ``(D) who suffers from a serious illness or health 
                condition and for whom there is a reasonable likelihood 
                that the individual's life will be threatened by such 
                illness or condition; and
                    ``(E) whose health status is expected to decline 
                because of such illness or condition before attaining 
                the age of 21.
            ``(3) ChiPACC coordinator.--The term `ChiPACC coordinator' 
        means, with respect to a ChiPACC, an entity (which may be the 
        State administering agency or another entity under an 
        arrangement with such an agency) that, through the assignment 
        of one or more case managers--
                    ``(A) directs, supervises, and assures the 
                coordination of comprehensive services to ChiPACC-
                eligible individuals enrolled in the ChiPACC; and
                    ``(B) assures the direct and continuous involvement 
                of an interdisciplinary health professional team in 
                managing and coordinating the provision of care and 
                services within the coordinator's responsibility to 
                each such enrolled individual.
            ``(4) Interdisciplinary health professional team.--The term 
        `interdisciplinary health professional team' means, with 
        respect to a ChiPACC, a group of health professionals that--
                    ``(A) includes at least--
                            ``(i) one physician (as defined in section 
                        1861(r));
                            ``(ii) one registered professional nurse;
                            ``(iii) one social worker, pastoral 
                        counselor, or other counselor; and
                            ``(iv) one case manager who may be one of 
                        the individuals described in clauses (i) 
                        through (iii);
                    ``(B) develops a comprehensive plan of care for 
                ChiPACC-eligible individuals enrolled with the ChiPACC 
                and furnishes, or supervises the provision of care and 
                services described in subsection (c)(1) to an 
                individual enrolled in the ChiPACC in a manner that 
                takes into account the best interests of such 
                individual and such individual's family; and
                    ``(C) through direct action and communication with 
                health care providers furnishing services under the 
                ChiPACC, on behalf of or under the direction or 
                supervision of, a State administering agency or a 
                ChiPACC coordinator, coordinates the care and services 
                furnished to such enrollees.
            ``(5) Palliative services.--The term `palliative services' 
        means patient and family-centered care that optimizes quality 
        of life for an individual with a serious illness or condition 
        by--
                    ``(A) anticipating, preventing, and treating the 
                individual's suffering throughout the continuum of 
                illness;
                    ``(B) addressing the physical, intellectual, 
                emotional, social and spiritual needs of the 
                individual; and
                    ``(C) facilitating the individual's autonomy, 
                access to information, and choice.
            ``(6) State administering agency.--The term `State 
        administering agency' means the State agency administering the 
        State plan under this title (or a waiver of such plan).
    ``(c) Scope of Benefits.--
            ``(1) In general.--Under a ChiPACC of a State, the State 
        administering agency shall assure that--
                    ``(A) an individual enrolled in the ChiPACC is 
                covered for, at least--
                            ``(i) comprehensive, integrated palliative 
                        and curative services;
                            ``(ii) any long-term care services and 
                        supports provided under the State plan under 
                        this title (or waiver of such plan);
                            ``(iii) counseling services and expressive 
                        therapy;
                            ``(iv) respite care; and
                            ``(v) anticipatory bereavement services to 
                        the immediate family members of the ChiPACC-
                        eligible individual; and
                    ``(B) the ChiPACC is operated, and the services to 
                enrolled individuals are furnished, in a manner that is 
                consistent with Standards of Care and Practice 
                Guidelines developed by Children's Hospice 
                International for a Program of All-Inclusive Care for 
                Children (as in effect as of the date of the enactment 
                of this section or such later date as the Secretary may 
                specify) or such other standards as the Secretary may 
                provide.
            ``(2) Construction.--Nothing in this subsection shall be 
        construed to preclude a ChiPACC-eligible individual's 
        eligibility to receive other services under the State plan (or 
        a waiver of such plan), including early and periodic screening, 
        diagnostic, and treatment services under section 1905(a)(4)(B).
            ``(3) Quality assurance; patient safeguards.--
                    ``(A) In general.--With respect to a ChiPACC, 
                quality assurance and patient safeguards shall be 
                established by the State administering agency or shall 
                be consistent with existing State systems.
                    ``(B) Construction.--Nothing in this subsection 
                shall be construed as preventing the Secretary from 
                imposing requirements to ensure the health and safety 
                of individuals enrolled in a ChiPACC under this section 
                that are in addition to those otherwise provided under 
                this section.
            ``(4) Cost-sharing waiver.--A State administering agency 
        may, in the case of a ChiPACC-eligible individual enrolled in 
        the State's ChiPACC, waive deductibles, copayments, 
        coinsurance, or other cost-sharing that would otherwise apply 
        under the State plan under this title.
    ``(d) Eligibility Determinations.--
            ``(1) In general.--In determining whether an individual is 
        a ChiPACC-eligible individual, the State administering agency 
        shall conduct an independent evaluation and assessment, which 
        shall include at least the following:
                    ``(A) Consultation with appropriate treating and 
                consulting health and support professionals caring for 
                the individual.
                    ``(B) An examination of the individual's relevant 
                history, medical records, and care and support needs, 
                guided by best practices and research on effective 
                strategies that result in improved health and quality 
                of life outcomes.
                    ``(C) To the extent appropriate, consultation with 
                the individual, individual's family, guardian, or other 
                responsible individual.
            ``(2) Recordkeeping; appeals.--Any entity making the 
        eligibility determination under paragraph (1) under contract 
        with the State administering agency shall be subject to the 
        recordkeeping and appeals processes requirements specified in 
        section 1902(a)(3).
    ``(e) Payments to Health Care Providers and ChiPACC Coordinators 
Under ChiPACC.--Payments to health care providers, a ChiPACC 
coordinator, or an interdisciplinary health professional team 
furnishing items and services under a ChiPACC shall be paid on a 
capitated or fee-for-service basis (or as otherwise allowable under the 
State plan under this title).
    ``(f) Applicability of Requirements.--With respect to carrying out 
a ChiPACC under this section, the following requirements of this title 
(and regulations relating to such requirements) shall not apply:
            ``(1) Section 1902(a)(1), relating to any requirement that 
        ChiPACCs or ChiPACC services be provided in all areas of a 
        State.
            ``(2) Section 1902(a)(10), insofar as such section relates 
        to comparability of services among different population groups.
            ``(3) Sections 1902(a)(23) and 1915(b)(4), relating to 
        freedom of choice of providers.
            ``(4) Section 1903(m)(2)(A), insofar as it restricts a 
        ChiPACC provider from receiving prepaid capitation payments.
            ``(5) Section 1905(o), limiting the scope of hospice care.
            ``(6) Such other provisions of this title that the 
        Secretary determines are inapplicable.''.
    (b) Application Under CHIP.--Section 2107(e)(1) of the Social 
Security Act (42 U.S.C. 1397gg(e)(1)) is amended by adding at the end 
the following new subparagraph:
                    ``(S) Section 1947 (relating to Medicaid children's 
                program of all-inclusive coordinated care).''.
    (c) Continued Demonstration Project Authority.--Section 1947 of the 
Social Security Act, as added by subsection (a), shall not be construed 
as preventing a State from developing, or the Secretary of Health and 
Human Services from approving, a project similar to or related to 
ChiPACCs (as described in such section) under alternative authorities, 
including demonstration project and waiver authorities under title XIX 
of such Act or other provisions of such Act.
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