I 117th CONGRESS 1st Session H. R. 4952 IN THE HOUSE OF REPRESENTATIVES August 6, 2021 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.

1. Short title This Act may be cited as the ChiPACC Act of 2021 . 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) many critical barriers to end-of-life care for children exist under the current health care system, including the limitation of hospice care under the Medicaid program to children expected to live six months or less, a prognosis that medical professionals and families are reluctant to make; (4) 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; (5) 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; (6) 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; (7) 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 CHIPACC 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 (8) 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. 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 ( 42 U.S.C. 1396a et seq. ), as amended by section 9813 of the American Rescue Plan Act of 2021, is further amended by inserting after section 1947 the following new section: 1948. Children’s program of all-inclusive coordinated care (a) State option (1) In general Beginning on January 1, 2022, a State, at its option as a State plan amendment, may elect to provide for ChiPACC services 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— (A) the individual shall receive ChiPACC services (as described in subsection (c)), including but not limited to 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) Process for determining eligible individuals If a State elects to establish a limitation under paragraph (2), the State shall establish a process, as described in subsection (e), for determining criteria for which individuals who may be enrolled in the State’s ChiPACC. (3) State administration The ChiPACC shall be administered by the single State agency as described in section 1904(a)(5). (4) Matching rate The Federal medical assistance percentage for ChiPACC coordination, and services shall be that otherwise applicable to medical assistance for the State. (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 that meets the following requirements: (A) Operation The State shall provide for the operation of the program directly, serving as ChiPACC coordinator (as defined in paragraph 3), or through arrangements with one or more other entities that will serve as ChiPACC coordinators. (B) Comprehensive benefits (i) In general The program provides or coordinates the provision of comprehensive 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 subsections (c)(1) and (c)(2), to the extent such items and services are medically necessary as determined by the State; and (II) be provided consistent with a comprehensive care plan developed by an interdisciplinary health professional team (as defined in paragraph (4)). (C) Qualifications of providers Such items and services are provided through— (i) health care providers that 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; or (ii) in the case of counselors as described in (4)(iii), individuals who are legally authorized to provide counseling services under State law or a regulatory mechanism provided by State law or, if no law or regulatory mechanism is applicable, by determination of the State. (D) Standards and guidelines The ChiPACC is operated and the services to enrolled individuals are furnished in a manner that is informed by generally recognized professional guidelines, the Secretary may substitute the revision through sub-regulatory guidance. The Secretary may adopt other standards and guidelines consistent with the purposes of this section. (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 determined by the State; (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 that, through the assignment of one or more case managers— (A) directs, supervises, and ensures the coordination of services to ChiPACC eligible individuals enrolled in the ChiPACC; and (B) ensures the direct and continuous involvement of an interdisciplinary health professional team (as described in paragraph (4)) in managing and coordinating the provision of care and services within the coordinator’s responsibility, as determined by the State, 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 professionals that— (A) includes at least— (i) one physician (as described in section 1861(r)); (ii) one registered 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 care plan for each ChiPACC eligible individual enrolled with the ChiPACC that takes into account the best interests of such individual and such individual’s family; and (C) coordinates the provision of services described in subsections (c)(1) and (c)(2), as determined by the state, to an individual enrolled in the ChiPACC by members of the team or by other providers of services. (5) Palliative services The term palliative services means, for the purposes of this section, 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. (c) Scope of benefits (1) In general Under a ChiPACC of a State, the State shall ensure that an individual enrolled in the ChiPACC is covered for necessary services including— (A) any early and periodic screening diagnostic and treatment service, as described in section 1905(r); and (B) any additional services that may be necessary to ensure that such coverage includes at least the elements described in paragraph (2). (2) Elements of a program of all-inclusive coordinated care The elements referred to in paragraph (1)(A)(ii) are— (A) medical and long-term care services and supports as described in section 1905 or as may be available to the individual under waiver programs approved under section 1915; (B) palliative services as described in subsection (b)(5); (C) counseling services and expressive therapy; (D) respite care; and (E) anticipatory bereavement and bereavement services to the immediate family members of the ChiPACC eligible individual. (3) Cost-sharing waivers A State 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, as described in sections 1916 and 1916A. (d) Records A provider participating in an interdisciplinary health professional team shall 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. (e) Eligibility determinations In determining whether an individual is a ChiPACC eligible individual, the State shall conduct, directly or under arrangement, an assessment based on a determination by a physician and consultation with appropriate treating and consulting health and support professionals caring for the individual. (f) Payments to health care providers and ChiPACC coordinators under ChiPACC Payments to health care providers, a ChiPACC coordinator, or members of an interdisciplinary health professional team furnishing items and services under a ChiPACC shall be made on a fee-for-service basis, through a Medicaid managed care organization (as described in section 1903(m)(1)), or as otherwise allowable under the State plan under this title, and determined in a manner to ensure such payments are sufficient to support the ongoing care provided by such providers, coordinator, and team. (g) Quality assurance; patient safeguards (1) In general With respect to a ChiPACC, the State shall adopt quality assurance provisions and patient safeguards, which may be the same as those in existing State systems, applicable to ChiPACC coordinators and interdisciplinary health professional teams. (2) Construction Nothing in this section 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. (h) Applicability of requirements With respect to a State plan amendment 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, and to permit a ChiPACC program operating under this State plan amendment to enroll only individuals under age 21. (3) Section 1905(o), insofar as it limits eligibility for hospice care to individuals with a medical prognosis of a life expectancy of six months or less, as described in section 1861(dd)(3)(A). . (b) Application under chip Section 2107(e)(1) of the Social Security Act ( 42 U.S.C. 1397gg(e)(1) ), as amended by section 9822 of the American Rescue Plan Act of 2021, is further amended by adding at the end the following new subparagraph: (U) Section 1948 (relating to Medicaid children’s program of all-inclusive coordinated care). . (c) Continued demonstration project authority Section 1948 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.