ChiPACC Act of 2020

I 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 Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘ChiPACC Act of 4 2020’’. 5 SEC. 2. FINDINGS. 6 Congress finds that— 7 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 2 •HR 9002 IH (1) serious illnesses and health conditions that 1 are potentially life-threatening place significant 2 stress on both the child and family; 3 (2) palliative care relieves children’s symptoms 4 such as pain, fatigue, anxiety, nausea, and sleep 5 problems, and may be provided at any age or stage 6 of serious illness, and has been shown to enhance 7 the quality of life for both the child and family; 8 (3) under the existing model under the Med- 9 icaid program under title XIX of the Social Security 10 Act (42 U.S.C. 1396 et seq.), eligible children diag- 11 nosed with potentially life-limiting illnesses are lim- 12 ited to receiving hospice services only after they have 13 been given a prognosis of six months to live. There 14 remain many critical barriers to end-of-life care 15 under the current health care system, including re- 16 luctance of medical professionals and families to ac- 17 knowledge a limited life expectancy; 18 (4) such model offers discrete services, which 19 can be difficult to navigate, while the qualifications 20 for coverage under the Medicaid program can block 21 access to critical care; 22 (5) the Children’s Program of All-inclusive Co- 23 ordinated Care (referred to in this Act as 24 ‘‘ChiPACC’’) provides all-inclusive care for children 25 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 3 •HR 9002 IH with life-threatening conditions and their families 1 from the time of diagnosis and— 2 (A) fills a gap in coverage under the Med- 3 icaid program of integrated, multi-disciplinary 4 services that are reasonable and necessary for 5 the palliation and management of seriously ill 6 children; 7 (B) serves a population that includes chil- 8 dren who are not yet hospice eligible; and 9 (C) provides greater coordination of pallia- 10 tive and curative services for children through- 11 out the course of their illness or condition, 12 which may begin at the time of diagnosis; 13 (6) some States have opted to provide services 14 targeted to this population through waivers under 15 subsections (b) and (c) of section 1915 of the Social 16 Security Act (42 U.S.C. 1396n), each of which re- 17 quires the approval of the Centers for Medicare & 18 Medicaid Services of the initial waiver application 19 and any subsequent renewal of such waiver; 20 (7) since 2005, the Secretary of Health and 21 Human Services has approved home and community- 22 based service waivers under section 1915(c) of such 23 Act (42 U.S.C. 1396n(c)) to operate ChiPACC in 24 five States; 25 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 4 •HR 9002 IH (8) in States operating ChiPACC under such a 1 waiver— 2 (A) the respective State’s Medicaid pro- 3 gram achieved significant cost savings through 4 a reduction in inpatient care and an increase in 5 less expensive outpatient care; 6 (B) access to such services in such States 7 reduced more costly utilizations of other serv- 8 ices; and 9 (C) services provided through ChiPACC 10 are less costly to the State’s Medicaid program 11 because ChiPACC facilitates children receiving 12 palliative care at home rather than receiving 13 such services in an inpatient hospital setting; 14 and 15 (9) allowing States the option to implement 16 ChiPACC through a State plan amendment would— 17 (A) give States the ability to make such 18 program a part of a State’s Medicaid program 19 while avoiding the lengthy waiver process; and 20 (B) give States the flexibility to establish 21 and design its program to fit the needs of the 22 respective State. 23 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 5 •HR 9002 IH SEC. 3. OPTIONAL MEDICAID COVERAGE OF CHILDREN’S 1 PROGRAM OF ALL-INCLUSIVE COORDINATED 2 CARE. 3 (a) CHILDREN’S PROGRAM OF ALL-INCLUSIVE CO- 4 ORDINATED CARE.—Title XIX of the Social Security Act 5 is amended by inserting after section 1946 (42 U.S.C. 6 1396w–5) the following new section: 7 ‘‘SEC. 1947. CHILDREN’S PROGRAM OF ALL-INCLUSIVE CO- 8 ORDINATED CARE. 9 ‘‘(a) STATE OPTION.— 10 ‘‘(1) IN GENERAL.—Beginning on January 1, 11 2021, a State, at its option as a State plan amend- 12 ment, may elect to provide for medical assistance 13 under this title to ChiPACC-eligible individuals who 14 choose to enroll in a children’s program of all-inclu- 15 sive coordinated care. In the case of an individual 16 who chooses to enroll in such a program pursuant 17 to such an election— 18 ‘‘(A) the individual shall receive ChiPACC 19 benefits in addition to other services under the 20 State plan; and 21 ‘‘(B) the health care providers furnishing 22 services under such program shall receive pay- 23 ment for providing such services in accordance 24 with the terms of the State plan. 25 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 6 •HR 9002 IH ‘‘(2) NUMERICAL AND GEOGRAPHICAL LIMITA- 1 TIONS PERMITTED.—A State may establish— 2 ‘‘(A) a numerical limit on the number of 3 individuals who may be enrolled in the State’s 4 ChiPACC; or 5 ‘‘(B) geographic limitations on the service 6 areas for a ChiPACC. 7 ‘‘(3) PROCESS FOR DETERMINING ELIGIBLE IN- 8 DIVIDUALS.—If a State elects to establish a limita- 9 tion under paragraph (2), the State shall establish 10 a process for determining criteria for which individ- 11 uals who may be enrolled in the State’s ChiPACC. 12 ‘‘(b) CHIPACC AND OTHER TERMS DEFINED.—In 13 this section: 14 ‘‘(1) CHILDREN’S PROGRAM OF ALL-INCLUSIVE 15 COORDINATED CARE; CHIPACC.—The terms ‘chil- 16 dren’s program of all-inclusive coordinated care’ and 17 ‘ChiPACC’ mean a program of coordinated care for 18 ChiPACC-eligible children that is established by a 19 State under this section and meets the following re- 20 quirements: 21 ‘‘(A) OPERATION.—The State admin- 22 istering agency may provide for the operation of 23 the program through arrangements between one 24 or more other entities that will serve as 25 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 7 •HR 9002 IH ChiPACC coordinators (as defined in paragraph 1 (3)). 2 ‘‘(B) COMPREHENSIVE BENEFITS.— 3 ‘‘(i) IN GENERAL.—The program pro- 4 vides comprehensive health care items and 5 services to ChiPACC-eligible individuals 6 (as defined in paragraph (2)) in accord- 7 ance with this section. 8 ‘‘(ii) SCOPE AND PLAN FOR SERV- 9 ICES.—Such items and services shall— 10 ‘‘(I) include items and services 11 described in subsection (c)(1)(A) to 12 the extent such items and services are 13 reasonable and necessary, as deter- 14 mined by the State, for the palliation 15 and management of the CHIPACC-el- 16 igible individual’s serious illness or 17 condition; and 18 ‘‘(II) be provided consistent with 19 a comprehensive care plan developed 20 by an interdisciplinary health profes- 21 sional team (as defined in paragraph 22 (4)). 23 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 8 •HR 9002 IH ‘‘(iii) QUALIFICATIONS OF PRO- 1 VIDERS.—Such items and services are pro- 2 vided through health care providers that— 3 ‘‘(I) meet such certification or 4 other Federal or State requirements 5 as may be necessary to participate in 6 the program of medical assistance 7 under this title or in the program 8 under title XVIII; and 9 ‘‘(II) maintain records on 10 ChiPACC-eligible individuals enrolled 11 in the program and to whom the pro- 12 vider furnishes services, reflecting 13 both the specific care and services fur- 14 nished by the provider and the rela- 15 tionship of those services to the com- 16 prehensive plan of care for that indi- 17 vidual and to the delivery of other 18 services. 19 ‘‘(2) CHIPACC-ELIGIBLE INDIVIDUAL.—The 20 term ‘ChiPACC-eligible individual’ means, with re- 21 spect to a ChiPACC, an individual— 22 ‘‘(A) who, at the time of enrollment in the 23 ChiPACC, is under 21 years of age; 24 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 9 •HR 9002 IH ‘‘(B) who resides in the service area of a 1 ChiPACC, as defined by the State admin- 2 istering agency; 3 ‘‘(C) who is eligible for medical assistance 4 under the State plan without regard to this sec- 5 tion; 6 ‘‘(D) who suffers from a serious illness or 7 health condition and for whom there is a rea- 8 sonable likelihood that the individual’s life will 9 be threatened by such illness or condition; and 10 ‘‘(E) whose health status is expected to de- 11 cline because of such illness or condition before 12 attaining the age of 21. 13 ‘‘(3) CHIPACC COORDINATOR.—The term 14 ‘ChiPACC coordinator’ means, with respect to a 15 ChiPACC, an entity (which may be the State admin- 16 istering agency or another entity under an arrange- 17 ment with such an agency) that, through the assign- 18 ment of one or more case managers— 19 ‘‘(A) directs, supervises, and assures the 20 coordination of comprehensive services to 21 ChiPACC-eligible individuals enrolled in the 22 ChiPACC; and 23 ‘‘(B) assures the direct and continuous in- 24 volvement of an interdisciplinary health profes- 25 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 10 •HR 9002 IH sional team in managing and coordinating the 1 provision of care and services within the coordi- 2 nator’s responsibility to each such enrolled indi- 3 vidual. 4 ‘‘(4) INTERDISCIPLINARY HEALTH PROFES- 5 SIONAL TEAM.—The term ‘interdisciplinary health 6 professional team’ means, with respect to a 7 ChiPACC, a group of health professionals that— 8 ‘‘(A) includes at least— 9 ‘‘(i) one physician (as defined in sec- 10 tion 1861(r)); 11 ‘‘(ii) one registered professional nurse; 12 ‘‘(iii) one social worker, pastoral coun- 13 selor, or other counselor; and 14 ‘‘(iv) one case manager who may be 15 one of the individuals described in clauses 16 (i) through (iii); 17 ‘‘(B) develops a comprehensive plan of care 18 for ChiPACC-eligible individuals enrolled with 19 the ChiPACC and furnishes, or supervises the 20 provision of care and services described in sub- 21 section (c)(1) to an individual enrolled in the 22 ChiPACC in a manner that takes into account 23 the best interests of such individual and such 24 individual’s family; and 25 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 11 •HR 9002 IH ‘‘(C) through direct action and communica- 1 tion with health care providers furnishing serv- 2 ices under the ChiPACC, on behalf of or under 3 the direction or supervision of, a State admin- 4 istering agency or a ChiPACC coordinator, co- 5 ordinates the care and services furnished to 6 such enrollees. 7 ‘‘(5) PALLIATIVE SERVICES.—The term ‘pallia- 8 tive services’ means patient and family-centered care 9 that optimizes quality of life for an individual with 10 a serious illness or condition by— 11 ‘‘(A) anticipating, preventing, and treating 12 the individual’s suffering throughout the con- 13 tinuum of illness; 14 ‘‘(B) addressing the physical, intellectual, 15 emotional, social and spiritual needs of the indi- 16 vidual; and 17 ‘‘(C) facilitating the individual’s autonomy, 18 access to information, and choice. 19 ‘‘(6) STATE ADMINISTERING AGENCY.—The 20 term ‘State administering agency’ means the State 21 agency administering the State plan under this title 22 (or a waiver of such plan). 23 ‘‘(c) SCOPE OF BENEFITS.— 24 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 12 •HR 9002 IH ‘‘(1) IN GENERAL.—Under a ChiPACC of a 1 State, the State administering agency shall assure 2 that— 3 ‘‘(A) an individual enrolled in the 4 ChiPACC is covered for, at least— 5 ‘‘(i) comprehensive, integrated pallia- 6 tive and curative services; 7 ‘‘(ii) any long-term care services and 8 supports provided under the State plan 9 under this title (or waiver of such plan); 10 ‘‘(iii) counseling services and expres- 11 sive therapy; 12 ‘‘(iv) respite care; and 13 ‘‘(v) anticipatory bereavement services 14 to the immediate family members of the 15 ChiPACC-eligible individual; and 16 ‘‘(B) the ChiPACC is operated, and the 17 services to enrolled individuals are furnished, in 18 a manner that is consistent with Standards of 19 Care and Practice Guidelines developed by Chil- 20 dren’s Hospice International for a Program of 21 All-Inclusive Care for Children (as in effect as 22 of the date of the enactment of this section or 23 such later date as the Secretary may specify) or 24 VerDate Sep 11 2014 23:23 Jan 10, 2021 Jkt 019200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H9002.IH H9002 pbinns on DSKJLVW7X2PROD with BILLS 13 •HR 9002 IH such other standards as the Secretary may pro- 1 vide. 2 ‘‘(2) CONSTRUCTION.—Nothing in this sub- 3 section shall be construed to preclude a ChiPACC- 4 eligible individual’s eligibility to receive other serv- 5 ices under the State plan (or a waiver of such plan), 6 including early and periodic screening, diagnostic, 7 and treatment services under section 1905(a)(4)(B). 8 ‘‘(3) QUALITY ASSURANCE; PATIENT SAFE- 9 GUARDS.— 10 ‘‘(A) IN GENERAL.—With respect to a 11 ChiPACC, quality assurance a [Text truncated for display. 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