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-
tives 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— 
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(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 Med-
icaid program under title XIX of the Social Security 
Act (42 U.S.C. 1396 et seq.), eligible children diag-
nosed with potentially life-limiting illnesses are lim-
ited 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 re-
luctance of medical professionals and families to ac-
knowledge 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 Co-
ordinated Care (referred to in this Act as 
‘‘ChiPACC’’) provides all-inclusive care for children 
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with life-threatening conditions and their families 
from the time of diagnosis and— 
(A) fills a gap in coverage under the Med-
icaid 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 chil-
dren who are not yet hospice eligible; and 
(C) provides greater coordination of pallia-
tive and curative services for children through-
out 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 re-
quires 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; 
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(8) in States operating ChiPACC under such a 
waiver— 
(A) the respective State’s Medicaid pro-
gram 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 serv-
ices; 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. 
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SEC. 3. OPTIONAL MEDICAID COVERAGE OF CHILDREN’S 
PROGRAM OF ALL-INCLUSIVE COORDINATED 
CARE. 
(a) CHILDREN’S PROGRAM OF ALL-INCLUSIVE CO-
ORDINATED 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 CO-
ORDINATED CARE. 
‘‘(a) STATE OPTION.— 
‘‘(1) IN GENERAL.—Beginning on January 1, 
2021, a State, at its option as a State plan amend-
ment, 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-inclu-
sive 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 pay-
ment for providing such services in accordance 
with the terms of the State plan. 
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‘‘(2) NUMERICAL AND GEOGRAPHICAL LIMITA-
TIONS 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 IN-
DIVIDUALS.—If a State elects to establish a limita-
tion under paragraph (2), the State shall establish 
a process for determining criteria for which individ-
uals 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 ‘chil-
dren’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 re-
quirements: 
‘‘(A) 
OPERATION.—The 
State 
admin-
istering agency may provide for the operation of 
the program through arrangements between one 
or more other entities that will serve as 
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ChiPACC coordinators (as defined in paragraph 
(3)). 
‘‘(B) COMPREHENSIVE BENEFITS.— 
‘‘(i) IN GENERAL.—The program pro-
vides comprehensive health care items and 
services to ChiPACC-eligible individuals 
(as defined in paragraph (2)) in accord-
ance with this section. 
‘‘(ii) SCOPE
AND
PLAN
FOR
SERV-
ICES.—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 deter-
mined by the State, for the palliation 
and management of the CHIPACC-el-
igible individual’s serious illness or 
condition; and 
‘‘(II) be provided consistent with 
a comprehensive care plan developed 
by an interdisciplinary health profes-
sional team (as defined in paragraph 
(4)). 
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‘‘(iii) 
QUALIFICATIONS
OF
PRO-
VIDERS.—Such items and services are pro-
vided 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 pro-
vider furnishes services, reflecting 
both the specific care and services fur-
nished by the provider and the rela-
tionship of those services to the com-
prehensive plan of care for that indi-
vidual and to the delivery of other 
services. 
‘‘(2) 
CHIPACC-ELIGIBLE
INDIVIDUAL.—The 
term ‘ChiPACC-eligible individual’ means, with re-
spect to a ChiPACC, an individual— 
‘‘(A) who, at the time of enrollment in the 
ChiPACC, is under 21 years of age; 
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‘‘(B) who resides in the service area of a 
ChiPACC, as defined by the State admin-
istering agency; 
‘‘(C) who is eligible for medical assistance 
under the State plan without regard to this sec-
tion; 
‘‘(D) who suffers from a serious illness or 
health condition and for whom there is a rea-
sonable likelihood that the individual’s life will 
be threatened by such illness or condition; and 
‘‘(E) whose health status is expected to de-
cline 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 admin-
istering agency or another entity under an arrange-
ment with such an agency) that, through the assign-
ment 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 in-
volvement of an interdisciplinary health profes-
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sional team in managing and coordinating the 
provision of care and services within the coordi-
nator’s responsibility to each such enrolled indi-
vidual. 
‘‘(4) INTERDISCIPLINARY
HEALTH
PROFES-
SIONAL
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 sec-
tion 1861(r)); 
‘‘(ii) one registered professional nurse; 
‘‘(iii) one social worker, pastoral coun-
selor, 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 sub-
section (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 
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‘‘(C) through direct action and communica-
tion with health care providers furnishing serv-
ices under the ChiPACC, on behalf of or under 
the direction or supervision of, a State admin-
istering agency or a ChiPACC coordinator, co-
ordinates the care and services furnished to 
such enrollees. 
‘‘(5) PALLIATIVE SERVICES.—The term ‘pallia-
tive 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 con-
tinuum of illness; 
‘‘(B) addressing the physical, intellectual, 
emotional, social and spiritual needs of the indi-
vidual; 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.— 
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‘‘(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 pallia-
tive 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 expres-
sive 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 Chil-
dren’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 
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such other standards as the Secretary may pro-
vide. 
‘‘(2) CONSTRUCTION.—Nothing in this sub-
section shall be construed to preclude a ChiPACC- 
eligible individual’s eligibility to receive other serv-
ices 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
SAFE-
GUARDS.— 
‘‘(A) IN
GENERAL.—With respect to a 
ChiPACC, quality assurance and patient safe-
guards shall be established by the State admin-
istering agency or shall be consistent with exist-
ing 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 addi-
tion to those otherwise provided under this sec-
tion. 
‘‘(4) COST-SHARING WAIVER.—A State admin-
istering agency may, in the case of a ChiPACC-eligi-
ble individual enrolled in the State’s ChiPACC, 
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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 inde-
pendent evaluation and assessment, which shall in-
clude at least the following: 
‘‘(A) Consultation with appropriate treat-
ing and consulting health and support profes-
sionals 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 re-
search on effective strategies that result in im-
proved health and quality of life outcomes. 
‘‘(C) To the extent appropriate, consulta-
tion with the individual, individual’s family, 
guardian, or other responsible individual. 
‘‘(2) RECORDKEEPING; APPEALS.—Any entity 
making the eligibility determination under para-
graph (1) under contract with the State admin-
istering agency shall be subject to the recordkeeping 
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and appeals processes requirements specified in sec-
tion 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 re-
spect to carrying out a ChiPACC under this section, the 
following requirements of this title (and regulations relat-
ing to such requirements) shall not apply: 
‘‘(1) Section 1902(a)(1), relating to any re-
quirement that ChiPACCs or ChiPACC services be 
provided in all areas of a State. 
‘‘(2) Section 1902(a)(10), insofar as such sec-
tion relates to comparability of services among dif-
ferent population groups. 
‘‘(3) Sections 1902(a)(23) and 1915(b)(4), re-
lating to freedom of choice of providers. 
‘‘(4) Section 1903(m)(2)(A), insofar as it re-
stricts a ChiPACC provider from receiving prepaid 
capitation payments. 
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‘‘(5) Section 1905(o), limiting the scope of hos-
pice 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 fol-
lowing new subparagraph: 
‘‘(S) Section 1947 (relating to Medicaid 
children’s program of all-inclusive coordinated 
care).’’. 
(c) CONTINUED
DEMONSTRATION
PROJECT
AU-
THORITY.—Section 1947 of the Social Security Act, as 
added by subsection (a), shall not be construed as pre-
venting 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 dem-
onstration project and waiver authorities under title XIX 
of such Act or other provisions of such Act. 
Æ 
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