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and who are enrolled in the program. In the case of 
an individual enrolled in such a program pursuant to 
such an election— 
‘‘(A) the individual shall receive benefits 
under the plan solely through such program; 
and 
‘‘(B) the health care providers furnishing 
services under such program shall receive pay-
ment in accordance with the terms of such pro-
gram for providing such services. 
‘‘(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; and 
‘‘(B) geographic limitations on the service 
areas for a 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 
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State under this section and meets the following re-
quirements: 
‘‘(A) OPERATION.—The program is admin-
istered by a single State agency. Such agency 
may provide for the operation of the program 
through arrangements between one or more 
other entities, such as a ChiPACC coordinator, 
and such agency. 
‘‘(B) COMPREHENSIVE BENEFITS.— 
‘‘(i) IN GENERAL.—The program pro-
vides comprehensive health care items and 
services to ChiPACC eligible individuals in 
accordance with this section and regula-
tions. 
‘‘(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 
appropriate to the individual; and 
‘‘(II) be provided consistent with 
a comprehensive care plan developed 
by an interdisciplinary health profes-
sional team. 
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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 quality requirements as may be 
necessary to participate in the pro-
gram 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 to the individual through the 
program. 
‘‘(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 a child (as defined under the State 
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plan for this purpose) and who is not older than 
such age as the State may specify; 
‘‘(B) who suffers from a serious illness or 
health condition that is life threatening; 
‘‘(C) for whom there is a reasonable likeli-
hood that the child’s life will be threatened by 
such illness or condition; 
‘‘(D) whose health status is expected to de-
cline because of such illness or condition before 
attaining full adulthood (as defined under the 
State plan); 
‘‘(E) resides in the service area of the 
ChiPACC; and 
‘‘(F) is eligible for medical assistance 
under the State plan without regard to this sec-
tion (or, but for enrollment in a ChiPACC 
would, based on the individual’s illness or 
health condition or the projected cost of treat-
ment required for such illness or condition, be-
come so eligible). 
The Secretary may waive the application of subpara-
graph (F) with respect to eligibility for medical as-
sistance under the State plan without regard to this 
section in the case of individuals if the State dem-
onstrates to the satisfaction of the Secretary that 
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the sum of the additional expenditures under this 
title resulting from such waiver in a fiscal year will 
not exceed the aggregate savings in expenditures 
otherwise resulting from the implementation of this 
section in the fiscal year. 
‘‘(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 directs, supervises, 
and assures the coordination of comprehensive serv-
ices to ChiPACC eligible individuals enrolled in the 
ChiPACC consistent with the following: 
‘‘(A) The entity must assure the direct and 
continuous involvement of an interdisciplinary 
health professional team in managing and co-
ordinating the provision of care and services 
within the coordinator’s responsibility to each 
such enrolled individual. 
‘‘(B) The entity must include on its staff, 
or otherwise arrange for the provision of serv-
ices, through contracts or otherwise, of each of 
the types of the health care professionals and 
other service providers required to provide the 
items and services required under subsection 
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(c)(1)(A), to the extent such items and services 
are necessary and appropriate to the care of an 
enrolled individual. 
‘‘(C) To the extent consistent with provi-
sion of the highest quality of care to enrolled 
individuals— 
‘‘(i) promote the utilization of volun-
teers in the provision of care and services 
under the ChiPACC, in accordance with 
standards set by the Secretary, which 
standards shall ensure a continuing level of 
effort to utilize such volunteers; and 
‘‘(ii) ensure that records are main-
tained on the use of such volunteers and 
the cost savings and expansion of care and 
services achieved through the use of such 
volunteers. 
‘‘(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)(1)); 
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‘‘(ii) one registered professional nurse; 
and 
‘‘(iii) one social worker, pastoral coun-
selor, or other counselor; 
‘‘(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; and 
‘‘(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 in a manner that takes into ac-
count the best interests of each such enrollee 
and the enrollee’s family, as well as consider-
ations of cost and efficient use of available re-
sources. 
‘‘(5) STATE
ADMINISTERING
AGENCY.—The 
term ‘State administering agency’ means, with re-
spect to the operation of a ChiPACC in a State, the 
agency of that State (which may be the single agen-
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cy responsible for administration of the State plan 
under this title in the State) responsible for the im-
plementation, either directly or through arrange-
ments with one or more ChiPACC coordinators, of 
the ChiPACC under this section in the State. 
‘‘(6) REGULATIONS.—Except as otherwise pro-
vided, the term ‘regulations’ refers to interim final 
or final regulations promulgated under subsection 
(g). 
‘‘(c) SCOPE
OF BENEFITS; BENEFICIARY SAFE-
GUARDS.— 
‘‘(1) IN
GENERAL.—Under a ChiPACC of a 
State, the State administering agency shall assure 
that— 
‘‘(A) individuals enrolled in the ChiPACC 
are furnished, at a minimum— 
‘‘(i) all items and services that are 
necessary and appropriate to their care 
and that are covered under this title, and 
all additional items and services specified 
in regulations, but without any limitation 
or condition as to amount, duration, or 
scope; 
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‘‘(ii) access to covered items and serv-
ices, as needed, 24 hours per day, every 
day of the year; and 
‘‘(iii) services that include comprehen-
sive, integrated palliative and curative 
services, expressive therapy and counseling, 
and counseling and anticipatory bereave-
ment services to immediate family mem-
bers of the ChiPACC eligible individual, as 
part of the services to the eligible indi-
vidual; 
‘‘(B) provision of such services to such in-
dividuals through a comprehensive, interdiscipli-
nary and multidisciplinary health and social 
services delivery system which integrates, as ap-
propriate to the individual recipient of services, 
acute and long-term care services, palliative, 
respite and curative treatment, counseling and 
support for family members who are caretakers 
or otherwise relevant to appropriate care and 
treatment of the individual, and such other 
services as may be furnished pursuant to regu-
lations and the provisions of the applicable 
State plan; and 
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‘‘(C) 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). 
‘‘(2) QUALITY
ASSURANCE; 
PATIENT
SAFE-
GUARDS.—With respect to a ChiPACC, the State 
administering agency shall assure the following: 
‘‘(A) The provision of services under the 
ChiPACC meets Federal and State guidelines 
for quality assurance. 
‘‘(B) Necessary safeguards have been es-
tablished to protect the health and welfare of 
individuals enrolled in the ChiPACC under this 
section. 
‘‘(C) There is financial accountability of 
funds expended under this title with respect to 
such services. 
‘‘(D) There is a written plan of quality as-
surance, and procedures implementing such 
plan, in accordance with regulations. 
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‘‘(E) Written safeguards of the rights of 
individuals enrolled in the ChiPACC, including 
a patient bill of rights and procedures for griev-
ances and appeals, in accordance with regula-
tions and with other requirements of this title 
and Federal and State law designed for the pro-
tection of patients. 
‘‘(F) There are in effect procedures for 
data collection, record maintenance and reten-
tion, and the development of outcome measures, 
and such other policies, systems, and proce-
dures as are sufficient to afford the Secretary 
and the State administering agency access to 
records and data relating to the ChiPACC, in-
cluding pertinent financial, medical, and per-
sonnel records. 
‘‘(G) The agency shall submit to the Sec-
retary such reports as the Secretary finds (in 
consultation with State administering agencies) 
necessary to monitor the operation, cost, and 
effectiveness of ChiPACCs. 
‘‘(3) COST-SHARING WAIVER.—A State admin-
istering agency may, in the case of a ChiPACC eligi-
ble individual enrolled in the State’s ChiPACC, 
waive deductibles, copayments, coinsurance, or other 
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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 the following: 
‘‘(A) Where appropriate, consultation with 
the individual’s family, guardian, or other re-
sponsible individual. 
‘‘(B) Consultation with appropriate treat-
ing and consulting health and support profes-
sionals caring for the individual. 
‘‘(C) 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. 
‘‘(2) CERTIFICATION.—Upon completion of the 
evaluation and assessment described in paragraph 
(1), an individual meeting the criteria of a ChiPACC 
eligible individual shall be certified as such, pursuant 
to procedures specified in regulations and the appli-
cable State plan. 
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‘‘(3) CONTINUATION OF ELIGIBILITY.—An indi-
vidual who is a ChiPACC eligible individual may be 
deemed to continue to be such an individual notwith-
standing a determination that the individual no 
longer meets the requirement of subsection (b)(2)(B) 
if, in accordance with regulations, it is reasonably 
foreseeable that, if the individual is not furnished 
services under this section, the severity or impact of 
the individual’s illness or condition would increase to 
a degree that the individual would again meet such 
requirement before the individual attains adulthood 
or within the succeeding 12-month period. 
‘‘(4) ANNUAL
REEVALUATIONS.—Subject to 
such limitations as the Secretary may by regulation 
prescribe, the eligibility determination made under 
this subsection shall be reevaluated annually, except 
that such an annual evaluation may be waived, in 
accordance with regulations, in a case where the ad-
ministering State agency determines that there is no 
reasonable expectation of improvement or significant 
change in the individual’s illness or condition during 
a period to which the reevaluation requirement 
would otherwise be applicable. 
‘‘(5) ENROLLMENT AND DISENROLLMENT.— 
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‘‘(A) VOLUNTARY DISENROLLMENT AT ANY 
TIME.—The enrollment and disenrollment of 
ChiPACC eligible individuals in a ChiPACC 
shall be pursuant to procedures specified in reg-
ulations and the State plan, but shall permit an 
enrollee, or an enrollee’s guardian or other legal 
representative, acting on behalf of an enrollee, 
to voluntarily disenroll for any reason at any 
time. 
‘‘(B) LIMITATIONS ON DISENROLLMENT.— 
‘‘(i) IN GENERAL.—Regulations, and 
the applicable State plan, shall provide 
that a ChiPACC may not involuntarily 
disenroll a ChiPACC eligible individual en-
rolled in the ChiPACC except— 
‘‘(I) for disruptive or threatening 
behavior by the enrollee, or by a fam-
ily member with whom a health care 
provider providing services under the 
ChiPACC necessarily has contact in 
the provision of services, as defined in 
provisions of regulations (developed in 
close consultation with State admin-
istering agencies); and 
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‘‘(II) if there is a change in the 
individual’s medical condition, resi-
dency or geographic location, or finan-
cial situation such that the individual 
no longer is a ChiPACC eligible indi-
vidual and paragraph (3) does not 
apply to warrant continuation of en-
rollment. 
‘‘(ii) NO DISENROLLMENT FOR NON-
COMPLIANT BEHAVIOR.—Except as allowed 
under regulations, a ChiPACC may not 
disenroll a ChiPACC eligible individual on 
the ground that the individual has engaged 
in noncompliant behavior if such behavior 
is related to a mental or physical condition 
of the individual. For purposes of the pre-
ceding sentence, the term ‘noncompliant 
behavior’ includes repeated noncompliance 
with medical advice and repeated failure to 
appear for appointments. 
‘‘(iii) TIMELY REVIEW OF PROPOSED 
NONVOLUNTARY DISENROLLMENT.—A pro-
posed involuntary disenrollment under this 
subparagraph shall be subject to timely re-
view and final determination by the Sec-
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retary or by the State administering agen-
cy (as applicable), prior to the proposed 
disenrollment becoming effective, pursuant 
to procedures prescribed in regulations. 
‘‘(C) APPEALS.—If an individual is deter-
mined not to be a ChiPACC eligible individual 
upon application, any time after such services 
begin, or is disenrolled from a ChiPACC for 
reasons described in subparagraph (B)(i)(I), the 
State plan under this title shall allow for an ap-
peal of such determination. During the course 
of the appeals process, an individual previously 
enrolled in a ChiPACC shall continue to be so 
enrolled and to receive benefits through the 
ChiPACC. 
‘‘(6) 
CONSTRUCTION.—The 
fact 
that 
a 
ChiPACC eligible individual is enrolled under a 
ChiPACC shall not be construed as adversely affect-
ing the eligibility of the individual’s parents or care-
taker relatives for medical assistance under this 
title. 
‘‘(e) PAYMENTS
TO
HEALTH
CARE
PROVIDERS 
UNDER CHIPACC.— 
‘‘(1) IN GENERAL.—Payments to health care 
providers furnishing items and services under a 
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ChiPACC shall be paid on a capitated or fee-for- 
service basis, according to regulations and as speci-
fied in the applicable State plan consistent with this 
subsection. 
‘‘(2) USE OF INTEGRATED, BUDGET-NEUTRAL 
FINANCING.—Payments under this subsection shall 
be made— 
‘‘(A) on a basis that permits provision for 
integrated financing methodologies that allow 
providers to pool payments received from public 
and private programs and individuals; and 
‘‘(B) in amounts that are designed, accord-
ing to regulations, to ensure that aggregate 
payments under this section for individuals en-
rolled in a ChiPACC, whether made on a 
capitated basis or fee-for-service basis, do not 
exceed on average the aggregate payments that 
would have been paid under the State plan for 
such individuals if they were not so enrolled, 
taking into account the comparative case-mix of 
ChiPACC enrollees and such other factors as 
the Secretary determines to be appropriate. 
‘‘(f) TERMINATION PROCEDURES.— 
‘‘(1) IN GENERAL.—Under regulations— 
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‘‘(A) the Secretary may require a State ad-
ministering agency to terminate the participa-
tion of a ChiPACC coordinator for cause; and 
‘‘(B) a State administering agency may 
terminate operation of a ChiPACC after appro-
priate notice to the Secretary and enrollees. 
‘‘(2) 
CAUSES
FOR
COORDINATOR
TERMI-
NATION.—In accordance with regulations estab-
lishing procedures for termination of participation of 
ChiPACC coordinators, the Secretary may require a 
State administering agency to terminate participa-
tion of a ChiPACC coordinator for, among other 
reasons, the fact that— 
‘‘(A) the Secretary determines that the 
ChiPACC coordinator has failed to comply sub-
stantially with requirements for a ChiPACC co-
ordinator under this section; and 
‘‘(B) the State administering agency has 
failed to develop and successfully initiate, with-
in 30 days of the date of the receipt of written 
notice of such a determination for the ChiPACC 
coordinator, a plan to correct the coordinator’s 
deficiencies, or has failed to continue implemen-
tation of such a plan of correction. 
‘‘(g) REGULATIONS.— 
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‘‘(1) IN GENERAL.—The Secretary shall issue 
interim final or final regulations to carry out this 
section. 
‘‘(2) USE OF EXISTING STANDARDS.— 
‘‘(A) IN GENERAL.—In issuing such regu-
lations, the Secretary shall, to the extent appro-
priate and consistent with the provisions of this 
section, incorporate the standards and require-
ments applied to Programs of All-Inclusive Care 
for Children demonstration waiver programs 
that have been implemented before (or as of) 
the date of the enactment of this section, in-
cluding standards of care and practice guide-
lines applied under such programs. 
‘‘(B) FLEXIBILITY.—In order to provide 
for reasonable flexibility in adapting the service 
delivery model described in subparagraph (A) to 
the needs of particular organizations (such as 
those in rural areas or those that may deter-
mine it appropriate to use nonstaff physicians 
according to State licensing law requirements) 
under this section, the Secretary (in close con-
sultation with State administering agencies) 
may modify or waive provisions described in 
subparagraph (A) so long as any such modifica-
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tion or waiver is not inconsistent with and 
would not impair the essential elements, objec-
tives, and requirements of this section, but may 
not modify or waive any of the following provi-
sions: 
‘‘(i) The requirement of delivery of 
comprehensive, integrated palliative, res-
pite and curative services, therapy, coun-
seling and other medical and psycho-social 
services for ChiPACC eligible individual, to 
the extent such services would benefit the 
individual. 
‘‘(ii) The requirement of delivery of 
counseling and bereavement services to im-
mediate family members of the ChiPACC 
enrollees as part of the services to the en-
rollee. 
‘‘(iii) The requirement of an inter-
disciplinary health professional team ap-
proach to care management and service de-
livery to ChiPACC eligible individuals. 
‘‘(iv) The provision of integrated fi-
nancing methodologies that allow for the 
pooling of payments received from public 
and private programs and individuals. 
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‘‘(v) The limitation on average aggre-
gate payment under subsection (e)(2). 
‘‘(C) CONTINUATION
OF
MODIFICATIONS 
OR WAIVERS OPERATIONAL REQUIREMENTS.—If 
a State agency administering a program of all- 
inclusive coordinated care for seriously ill chil-
dren approved pursuant to waiver authority 
under section 1115 or 1915(c) has contractual 
or other operating arrangements relating to 
such program which are not otherwise recog-
nized in regulation and which were in effect as 
of the date of the enactment of this section, the 
Secretary shall permit the agency to continue 
such arrangements so long as such arrange-
ments are found by the Secretary to be reason-
ably consistent with the objectives of a 
ChiPACC. 
‘‘(3) CONSTRUCTION.—Nothing in this sub-
section shall be construed as preventing the Sec-
retary from including in regulations provisions to en-
sure 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) WAIVERS OF REQUIREMENTS.—With respect to 
carrying out a ChiPACC under this section, the following 
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requirements of this title (and regulations relating 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 under a 
ChiPACC. 
‘‘(4) Section 1903(m)(2)(A), insofar as it re-
stricts a ChiPACC provider from receiving prepaid 
capitation payments. 
‘‘(5) Such other provisions of this title that the 
Secretary determines are inapplicable to carrying out 
a ChiPACC under this section. 
‘‘(i) CONTINUED DEMONSTRATION PROJECT AU-
THORITY.—Nothing in this section shall be construed as 
preventing a State from developing, or the Secretary from 
approving, a project similar to or related to ChiPACCs 
as described in this section, under existing authorities, in-
cluding demonstration project and waiver authorities 
under this title or other provisions of this Act.’’. 
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(c) OTHER CONFORMING AMENDMENTS.—Section 
1905(r)(5) of such Act (42 U.S.C. 1396d(r)(5)) is amend-
ed by inserting before the period at the end the following: 
‘‘, other than items and services to the extent such items 
and services are included under subsection (a) because of 
the application of paragraph (28)’’. 
(d) TIMELY ISSUANCE OF REGULATIONS; EFFECTIVE 
DATE.—The Secretary of Health and Human Services 
shall promulgate regulations to carry out the amendments 
made by this section in a timely manner, so as to assure 
that it will be feasible for State agencies and entities to 
establish and operate ChiPACCs for periods beginning not 
later than 1 year after the date of the enactment of this 
Act. 
(e) FUNDS FOR TECHNICAL ASSISTANCE .—The Sec-
retary is authorized to expend funds appropriated to carry 
out title XIX of the Social Security Act to make grants 
to, or enter into contracts with, private entities or organi-
zations that are qualified to provide technical or other as-
sistance in developing and establishing ChiPACCs within 
the States, except that— 
(1) such funds may be expended solely for the 
purposes of implementing this section; and 
(2) a private entity or organization in receipt of 
such funds must have demonstrated expertise and a 
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