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 allinclusive coordinated care (ChiPACC) under Medicaid 

program. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘ChiPACC Act of 

5 2020’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds that— 


pbinns on DSKJLVW7X2PROD with BILLS
2 

•HR 9002 IH

1 (1) serious illnesses and health conditions that 

2 are potentially life-threatening place significant 

3 stress on both the child and family; 

4 (2) palliative care relieves children’s symptoms 

5 such as pain, fatigue, anxiety, nausea, and sleep 

6 problems, and may be provided at any age or stage 

7 of serious illness, and has been shown to enhance 

8 the quality of life for both the child and family; 

9 (3) under the existing model under the Med10 icaid program under title XIX of the Social Security 

11 Act (42 U.S.C. 1396 et seq.), eligible children diag12 nosed with potentially life-limiting illnesses are lim13 ited to receiving hospice services only after they have 

14 been given a prognosis of six months to live. There 

15 remain many critical barriers to end-of-life care 

16 under the current health care system, including re17 luctance of medical professionals and families to ac18 knowledge a limited life expectancy; 

19 (4) such model offers discrete services, which 

20 can be difficult to navigate, while the qualifications 

21 for coverage under the Medicaid program can block 

22 access to critical care; 

23 (5) the Children’s Program of All-inclusive Co24 ordinated Care (referred to in this Act as 

25 ‘‘ChiPACC’’) provides all-inclusive care for children 


pbinns on DSKJLVW7X2PROD with BILLS
3 

•HR 9002 IH

1 with life-threatening conditions and their families 

2 from the time of diagnosis and— 

3 (A) fills a gap in coverage under the Med4 icaid program of integrated, multi-disciplinary 

5 services that are reasonable and necessary for 

6 the palliation and management of seriously ill 

7 children; 

8 (B) serves a population that includes chil9 dren who are not yet hospice eligible; and 

10 (C) provides greater coordination of pallia11 tive and curative services for children through12 out the course of their illness or condition, 

13 which may begin at the time of diagnosis; 

14 (6) some States have opted to provide services 

15 targeted to this population through waivers under 

16 subsections (b) and (c) of section 1915 of the Social 

17 Security Act (42 U.S.C. 1396n), each of which re18 quires the approval of the Centers for Medicare & 

19 Medicaid Services of the initial waiver application 

20 and any subsequent renewal of such waiver; 

21 (7) since 2005, the Secretary of Health and 

22 Human Services has approved home and community23 based service waivers under section 1915(c) of such 

24 Act (42 U.S.C. 1396n(c)) to operate ChiPACC in 

25 five States; 


pbinns on DSKJLVW7X2PROD with BILLS
4 

•HR 9002 IH

1 (8) in States operating ChiPACC under such a 

2 waiver— 

3 (A) the respective State’s Medicaid pro4 gram achieved significant cost savings through 

5 a reduction in inpatient care and an increase in 

6 less expensive outpatient care; 

7 (B) access to such services in such States 

8 reduced more costly utilizations of other serv9 ices; and 

10 (C) services provided through ChiPACC 

11 are less costly to the State’s Medicaid program 

12 because ChiPACC facilitates children receiving 

13 palliative care at home rather than receiving 

14 such services in an inpatient hospital setting; 

15 and 

16 (9) allowing States the option to implement 

17 ChiPACC through a State plan amendment would— 

18 (A) give States the ability to make such 

19 program a part of a State’s Medicaid program 

20 while avoiding the lengthy waiver process; and 

21 (B) give States the flexibility to establish 

22 and design its program to fit the needs of the 

23 respective State. 


pbinns on DSKJLVW7X2PROD with BILLS
5 

•HR 9002 IH

1 SEC. 3. OPTIONAL MEDICAID COVERAGE OF CHILDREN’S 

2 PROGRAM OF ALL-INCLUSIVE COORDINATED 

3 CARE. 

4 (a) CHILDREN’S PROGRAM OF ALL-INCLUSIVE CO5 ORDINATED CARE.—Title XIX of the Social Security Act 

6 is amended by inserting after section 1946 (42 U.S.C. 

7 1396w–5) the following new section: 

8 ‘‘SEC. 1947. CHILDREN’S PROGRAM OF ALL-INCLUSIVE CO9 ORDINATED CARE. 

10 ‘‘(a) STATE OPTION.— 

11 ‘‘(1) IN GENERAL.—Beginning on January 1, 

12 2021, a State, at its option as a State plan amend13 ment, may elect to provide for medical assistance 

14 under this title to ChiPACC-eligible individuals who 

15 choose to enroll in a children’s program of all-inclu16 sive coordinated care. In the case of an individual 

17 who chooses to enroll in such a program pursuant 

18 to such an election— 

19 ‘‘(A) the individual shall receive ChiPACC 

20 benefits in addition to other services under the 

21 State plan; and 

22 ‘‘(B) the health care providers furnishing 

23 services under such program shall receive pay24 ment for providing such services in accordance 

25 with the terms of the State plan. 


pbinns on DSKJLVW7X2PROD with BILLS
6 

•HR 9002 IH

1 ‘‘(2) NUMERICAL AND GEOGRAPHICAL LIMITA2 TIONS PERMITTED.—A State may establish— 

3 ‘‘(A) a numerical limit on the number of 

4 individuals who may be enrolled in the State’s 

5 ChiPACC; or 

6 ‘‘(B) geographic limitations on the service 

7 areas for a ChiPACC. 

8 ‘‘(3) PROCESS FOR DETERMINING ELIGIBLE IN9 DIVIDUALS.—If a State elects to establish a limita10 tion under paragraph (2), the State shall establish 

11 a process for determining criteria for which individ12 uals who may be enrolled in the State’s ChiPACC. 

13 ‘‘(b) CHIPACC AND OTHER TERMS DEFINED.—In 

14 this section: 

15 ‘‘(1) CHILDREN’S PROGRAM OF ALL-INCLUSIVE

16 COORDINATED CARE; CHIPACC.—The terms ‘chil17 dren’s program of all-inclusive coordinated care’ and 

18 ‘ChiPACC’ mean a program of coordinated care for 

19 ChiPACC-eligible children that is established by a 

20 State under this section and meets the following re21 quirements: 

22 ‘‘(A) OPERATION.—The State admin23 istering agency may provide for the operation of 

24 the program through arrangements between one 

25 or more other entities that will serve as 


pbinns on DSKJLVW7X2PROD with BILLS
7 

•HR 9002 IH

1 ChiPACC coordinators (as defined in paragraph 

2 (3)). 

3 ‘‘(B) COMPREHENSIVE BENEFITS.— 

4 ‘‘(i) IN GENERAL.—The program pro5 vides comprehensive health care items and 

6 services to ChiPACC-eligible individuals 

7 (as defined in paragraph (2)) in accord8 ance with this section. 

9 ‘‘(ii) SCOPE AND PLAN FOR SERV10 ICES.—Such items and services shall— 

11 ‘‘(I) include items and services 

12 described in subsection (c)(1)(A) to 

13 the extent such items and services are 

14 reasonable and necessary, as deter15 mined by the State, for the palliation 

16 and management of the CHIPACC-el17 igible individual’s serious illness or 

18 condition; and 

19 ‘‘(II) be provided consistent with 

20 a comprehensive care plan developed 

21 by an interdisciplinary health profes22 sional team (as defined in paragraph 

23 (4)). 


pbinns on DSKJLVW7X2PROD with BILLS
8 

•HR 9002 IH

1 ‘‘(iii) QUALIFICATIONS OF PRO2 VIDERS.—Such items and services are pro3 vided through health care providers that— 

4 ‘‘(I) meet such certification or 

5 other Federal or State requirements 

6 as may be necessary to participate in 

7 the program of medical assistance 

8 under this title or in the program 

9 under title XVIII; and 

10 ‘‘(II) maintain records on 

11 ChiPACC-eligible individuals enrolled 

12 in the program and to whom the pro13 vider furnishes services, reflecting 

14 both the specific care and services fur15 nished by the provider and the rela16 tionship of those services to the com17 prehensive plan of care for that indi18 vidual and to the delivery of other 

19 services. 

20 ‘‘(2) CHIPACC-ELIGIBLE INDIVIDUAL.—The 

21 term ‘ChiPACC-eligible individual’ means, with re22 spect to a ChiPACC, an individual— 

23 ‘‘(A) who, at the time of enrollment in the 

24 ChiPACC, is under 21 years of age; 


pbinns on DSKJLVW7X2PROD with BILLS
9 

•HR 9002 IH

1 ‘‘(B) who resides in the service area of a 

2 ChiPACC, as defined by the State admin3 istering agency; 

4 ‘‘(C) who is eligible for medical assistance 

5 under the State plan without regard to this sec6 tion; 

7 ‘‘(D) who suffers from a serious illness or 

8 health condition and for whom there is a rea9 sonable likelihood that the individual’s life will 

10 be threatened by such illness or condition; and 

11 ‘‘(E) whose health status is expected to de12 cline because of such illness or condition before 

13 attaining the age of 21. 

14 ‘‘(3) CHIPACC COORDINATOR.—The term 

15 ‘ChiPACC coordinator’ means, with respect to a 

16 ChiPACC, an entity (which may be the State admin17 istering agency or another entity under an arrange18 ment with such an agency) that, through the assign19 ment of one or more case managers— 

20 ‘‘(A) directs, supervises, and assures the 

21 coordination of comprehensive services to 

22 ChiPACC-eligible individuals enrolled in the 

23 ChiPACC; and 

24 ‘‘(B) assures the direct and continuous in25 volvement of an interdisciplinary health profesVerDate 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

1 sional team in managing and coordinating the 

2 provision of care and services within the coordi3 nator’s responsibility to each such enrolled indi4 vidual. 

5 ‘‘(4) INTERDISCIPLINARY HEALTH PROFES6 SIONAL TEAM.—The term ‘interdisciplinary health 

7 professional team’ means, with respect to a 

8 ChiPACC, a group of health professionals that— 

9 ‘‘(A) includes at least— 

10 ‘‘(i) one physician (as defined in sec11 tion 1861(r)); 

12 ‘‘(ii) one registered professional nurse; 

13 ‘‘(iii) one social worker, pastoral coun14 selor, or other counselor; and 

15 ‘‘(iv) one case manager who may be 

16 one of the individuals described in clauses 

17 (i) through (iii); 

18 ‘‘(B) develops a comprehensive plan of care 

19 for ChiPACC-eligible individuals enrolled with 

20 the ChiPACC and furnishes, or supervises the 

21 provision of care and services described in sub22 section (c)(1) to an individual enrolled in the 

23 ChiPACC in a manner that takes into account 

24 the best interests of such individual and such 

25 individual’s family; and 


pbinns on DSKJLVW7X2PROD with BILLS
11 

•HR 9002 IH

1 ‘‘(C) through direct action and communica2 tion with health care providers furnishing serv3 ices under the ChiPACC, on behalf of or under 

4 the direction or supervision of, a State admin5 istering agency or a ChiPACC coordinator, co6 ordinates the care and services furnished to 

7 such enrollees. 

8 ‘‘(5) PALLIATIVE SERVICES.—The term ‘pallia9 tive services’ means patient and family-centered care 

10 that optimizes quality of life for an individual with 

11 a serious illness or condition by— 

12 ‘‘(A) anticipating, preventing, and treating 

13 the individual’s suffering throughout the con14 tinuum of illness; 

15 ‘‘(B) addressing the physical, intellectual, 

16 emotional, social and spiritual needs of the indi17 vidual; and 

18 ‘‘(C) facilitating the individual’s autonomy, 

19 access to information, and choice. 

20 ‘‘(6) STATE ADMINISTERING AGENCY.—The 

21 term ‘State administering agency’ means the State 

22 agency administering the State plan under this title 

23 (or a waiver of such plan). 

24 ‘‘(c) SCOPE OF BENEFITS.— 


pbinns on DSKJLVW7X2PROD with BILLS
12 

•HR 9002 IH

1 ‘‘(1) IN GENERAL.—Under a ChiPACC of a 

2 State, the State administering agency shall assure 

3 that— 

4 ‘‘(A) an individual enrolled in the 

5 ChiPACC is covered for, at least— 

6 ‘‘(i) comprehensive, integrated pallia7 tive and curative services; 

8 ‘‘(ii) any long-term care services and 

9 supports provided under the State plan 

10 under this title (or waiver of such plan); 

11 ‘‘(iii) counseling services and expres12 sive therapy; 

13 ‘‘(iv) respite care; and 

14 ‘‘(v) anticipatory bereavement services 

15 to the immediate family members of the 

16 ChiPACC-eligible individual; and 

17 ‘‘(B) the ChiPACC is operated, and the 

18 services to enrolled individuals are furnished, in 

19 a manner that is consistent with Standards of 

20 Care and Practice Guidelines developed by Chil21 dren’s Hospice International for a Program of 

22 All-Inclusive Care for Children (as in effect as 

23 of the date of the enactment of this section or 

24 such later date as the Secretary may specify) or 


pbinns on DSKJLVW7X2PROD with BILLS
13 

•HR 9002 IH

1 such other standards as the Secretary may pro2 vide. 

3 ‘‘(2) CONSTRUCTION.—Nothing in this sub4 section shall be construed to preclude a ChiPACC5 eligible individual’s eligibility to receive other serv6 ices under the State plan (or a waiver of such plan), 

7 including early and periodic screening, diagnostic, 

8 and treatment services under section 1905(a)(4)(B). 

9 ‘‘(3) QUALITY ASSURANCE; PATIENT SAFE10 GUARDS.— 

11 ‘‘(A) IN GENERAL.—With respect to a 

12 ChiPACC, quality assurance and patient safe13 guards shall be established by the State admin14 istering agency or shall be consistent with exist15 ing State systems. 

16 ‘‘(B) CONSTRUCTION.—Nothing in this 

17 subsection shall be construed as preventing the 

18 Secretary from imposing requirements to ensure 

19 the health and safety of individuals enrolled in 

20 a ChiPACC under this section that are in addi21 tion to those otherwise provided under this sec22 tion. 

23 ‘‘(4) COST-SHARING WAIVER.—A State admin24 istering agency may, in the case of a ChiPACC-eligi25 ble individual enrolled in the State’s ChiPACC, 


pbinns on DSKJLVW7X2PROD with BILLS
14 

•HR 9002 IH

1 waive deductibles, copayments, coinsurance, or other 

2 cost-sharing that would otherwise apply under the 

3 State plan under this title. 

4 ‘‘(d) ELIGIBILITY DETERMINATIONS.— 

5 ‘‘(1) IN GENERAL.—In determining whether an 

6 individual is a ChiPACC-eligible individual, the 

7 State administering agency shall conduct an inde8 pendent evaluation and assessment, which shall in9 clude at least the following: 

10 ‘‘(A) Consultation with appropriate treat11 ing and consulting health and support profes12 sionals caring for the individual. 

13 ‘‘(B) An examination of the individual’s 

14 relevant history, medical records, and care and 

15 support needs, guided by best practices and re16 search on effective strategies that result in im17 proved health and quality of life outcomes. 

18 ‘‘(C) To the extent appropriate, consulta19 tion with the individual, individual’s family, 

20 guardian, or other responsible individual. 

21 ‘‘(2) RECORDKEEPING; APPEALS.—Any entity 

22 making the eligibility determination under para23 graph (1) under contract with the State admin24 istering agency shall be subject to the recordkeeping 


pbinns on DSKJLVW7X2PROD with BILLS
15 

•HR 9002 IH

1 and appeals processes requirements specified in sec2 tion 1902(a)(3). 

3 ‘‘(e) PAYMENTS TO HEALTH CARE PROVIDERS AND

4 CHIPACC COORDINATORS UNDER CHIPACC.—Payments 

5 to health care providers, a ChiPACC coordinator, or an 

6 interdisciplinary health professional team furnishing items 

7 and services under a ChiPACC shall be paid on a capitated 

8 or fee-for-service basis (or as otherwise allowable under 

9 the State plan under this title). 

10 ‘‘(f) APPLICABILITY OF REQUIREMENTS.—With re11 spect to carrying out a ChiPACC under this section, the 

12 following requirements of this title (and regulations relat13 ing to such requirements) shall not apply: 

14 ‘‘(1) Section 1902(a)(1), relating to any re15 quirement that ChiPACCs or ChiPACC services be 

16 provided in all areas of a State. 

17 ‘‘(2) Section 1902(a)(10), insofar as such sec18 tion relates to comparability of services among dif19 ferent population groups. 

20 ‘‘(3) Sections 1902(a)(23) and 1915(b)(4), re21 lating to freedom of choice of providers. 

22 ‘‘(4) Section 1903(m)(2)(A), insofar as it re23 stricts a ChiPACC provider from receiving prepaid 

24 capitation payments. 


pbinns on DSKJLVW7X2PROD with BILLS
16 

•HR 9002 IH

1 ‘‘(5) Section 1905(o), limiting the scope of hos2 pice care. 

3 ‘‘(6) Such other provisions of this title that the 

4 Secretary determines are inapplicable.’’. 

5 (b) APPLICATION UNDER CHIP.—Section 

6 2107(e)(1) of the Social Security Act (42 U.S.C. 

7 1397gg(e)(1)) is amended by adding at the end the fol8 lowing new subparagraph: 

9 ‘‘(S) Section 1947 (relating to Medicaid 

10 children’s program of all-inclusive coordinated 

11 care).’’. 

12 (c) CONTINUED DEMONSTRATION PROJECT AU13 THORITY.—Section 1947 of the Social Security Act, as 

14 added by subsection (a), shall not be construed as pre15 venting a State from developing, or the Secretary of 

16 Health and Human Services from approving, a project 

17 similar to or related to ChiPACCs (as described in such 

18 section) under alternative authorities, including dem19 onstration project and waiver authorities under title XIX 

20 of such Act or other provisions of such Act. 

Æ 


pbinns on DSKJLVW7X2PROD with BILLS