Act, as added by section 2 of this Act) and their families, 
States, providers (including children’s hospitals, hospitals, 
pediatricians, and other providers), managed care plans, 
children’s health groups, family and beneficiary advocates, 
and other stakeholders with respect to coordinating the 
care for such children furnished by out-of-State providers. 
(c) STATE PARTICIPATION.—Not later than 90 days 
after the issuance of the best practice guidelines under 
subsection (a), States with a State plan amendment in ef-
fect under section 1947 of the Social Security Act shall 
submit to the Secretary of Health and Human Services, 
and make publicly available on the appropriate Internet 
website of the State, information on how the State is 
achieving the purposes described in such subsection, in-
cluding any of such best practices adopted by the State. 
SEC. 5. MACPAC REPORT. 
(a) IN GENERAL.—Not later than 24 months after 
the date of the enactment of this Act, the Medicaid and 
CHIP Payment and Access Commission established under 
section 1900 of the Social Security Act (42 U.S.C. 1396) 
shall submit to Congress and the Secretary of Health and 
Human Services a report on children with medically com-
plex conditions that— 
(1) describes options for defining the character-
istics of such children; 
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(2) includes the information described in sub-
section (b); and 
(3) includes such recommendations as the Com-
mission determines is appropriate. 
(b) INFORMATION TO BE INCLUDED.—The informa-
tion described in this subsection is, to the extent practical 
and available, the following information: 
(1) With respect to the characteristics of chil-
dren with medically complex conditions (as defined 
in section 1947 of the Social Security Act (as added 
by section 2 of this Act))— 
(A) a literature review examining— 
(i) research on such children; 
(ii) 
clinical 
measures 
or 
other 
groupings which enable comparison among 
such children; and 
(iii) demographic characteristics, in-
cluding primary language, based on avail-
able data; and 
(B) information gathered from consulta-
tion with medical and academic experts engaged 
in research about, or the treatment of, such 
children. 
(2) Information relating to children with medi-
cally complex conditions who are receiving medical 
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assistance under a State Medicaid plan under title 
XIX of the Social Security Act (or a waiver of such 
plan), including— 
(A) the number of such children; 
(B) the chronic conditions, life-threatening 
illnesses, disabilities, injuries, or rare diseases 
that such children have; 
(C) the number of such children receiving 
services under each delivery system or payment 
model, including health homes (as defined in 
such section 1947), fee-for-service systems, pri-
mary care case managers, or managed care 
plans; and 
(D) the extent to which such children re-
ceive care coordination services. 
(3) Information on the providers who furnish 
health care items and services to children with medi-
cally complex conditions, such as physicians (includ-
ing pediatricians and pediatric specialty or sub-
specialty providers), children’s hospitals, clinical 
practices or clinical group practices, rural clinics, 
community health centers, community mental health 
centers, or home health agencies. 
(4) The extent to which children with medically 
complex conditions receive (or are denied) health 
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care items and services from out-of-State providers 
that receive payment under the State Medicaid plan 
under title XIX of the Social Security Act (or a 
waiver of such plan) and any barriers to receiving 
such services from such providers in a timely fash-
ion, including any variation in access to such serv-
ices furnished by such providers, disaggregated by 
delivery system. 
(5) The amount and nature of the total re-
sources used to provide care to individual children 
with medically complex conditions during the period 
in which such a child is enrolled in a health home, 
including— 
(A) the amount of capital spent in pro-
viding such care; 
(B) the resources used to provide such care 
during any waiting period with respect to the 
enrollment of the child in the State plan under 
title XIX of the Social Security Act (or a waiv-
er of such plan) or any necessary approval 
under the State plan for the furnishing of such 
services (such as inpatient costs awaiting dis-
charge); 
(C) the cost of the coordination of such 
child’s care; 
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(D) the cost of providing to such child any 
non-medical benefits (such as transportation 
and home services); and 
(E) the clinical costs of providing such 
care. 
Æ 
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