I 
113TH CONGRESS 
2D SESSION 
H. R. 4930 
To amend titles XIX and XXI of the Social Security Act to provide States 
with the option of providing services to children with medically complex 
conditions under the Medicaid program and Children’s Health Insurance 
Program through a care coordination program focused on improving 
health outcomes for children with medically complex conditions and low-
ering costs, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
JUNE 20, 2014 
Mr. BARTON (for himself, Ms. CASTOR of Florida, Ms. HERRERA BEUTLER, 
Mr. GENE GREEN of Texas, and Ms. ESHOO) introduced the following 
bill; which was referred to the Committee on Energy and Commerce 
A BILL 
To amend titles XIX and XXI of the Social Security Act 
to provide States with the option of providing services 
to children with medically complex conditions under the 
Medicaid program and Children’s Health Insurance Pro-
gram through a care coordination program focused on 
improving health outcomes for children with medically 
complex conditions and lowering costs, and for other 
purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
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SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Advancing Care for 
Exceptional Kids Act of 2014’’ or the ‘‘ACE Kids Act of 
2014’’. 
SEC. 2. FINDINGS. 
Congress finds the following: 
(1) Approximately 3,000,000 children in the 
United States suffer from medically complex condi-
tions and approximately 2,000,000 of such children 
are enrolled in State plans under the Medicaid pro-
gram under title XIX of the Social Security Act. 
(2) Such children account for an estimated 6 
percent of Medicaid enrollees and approximately 40 
percent of children’s Medicaid spending is due to the 
severity of the illnesses of such children. 
(3) The creation of nationally designated chil-
dren’s hospital networks focused upon better coordi-
nation and integration of care for such pediatric 
population will result in improved health outcomes 
and savings under the Medicaid program and the 
Children’s Health Insurance Program under title 
XXI of the Social Security Act. 
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SEC. 3. ESTABLISHMENT OF MEDICAID AND CHIP CARE CO-
ORDINATION PROGRAM FOR CHILDREN WITH 
MEDICALLY COMPLEX CONDITIONS AS MED-
ICAID STATE OPTION. 
(a) MEDICAID.—Title XIX of the Social Security Act 
(42 U.S.C. 1396 et seq.) is amended— 
(1) in section 1905(a) (42 U.S.C. 1396d(a))— 
(A) by striking ‘‘and’’ at the end of para-
graph (27); 
(B) by redesignating paragraph (29) as 
paragraph (30); and 
(C) by inserting after paragraph (28) the 
following new paragraph: 
‘‘(29) items and services furnished under an 
MCCC program under section 1947 to eligible chil-
dren enrolled in an MCCC program under such sec-
tion.’’; and 
(2) by adding at the end the following new sec-
tion: 
‘‘SEC. 1947. MEDICAID CHILDREN’S CARE COORDINATION 
PROGRAMS FOR CHILDREN WITH COMPLEX 
MEDICAL CONDITIONS. 
‘‘(a) ESTABLISHMENT.— 
‘‘(1) IN
GENERAL.—Beginning January 1, 
2015, a State, at its option as a State plan amend-
ment, may elect to provide medical assistance for 
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items and services furnished to eligible children en-
rolled in an MCCC program that meets the require-
ments of this section. As a condition on an eligible 
child’s receipt of medical assistance under this title, 
the State shall require, under such an amendment, 
that the eligible child be enrolled in an MCCC pro-
gram that meets the requirements of this section. 
‘‘(b) MCCC PROGRAM REQUIREMENTS.—An MCCC 
program meets the requirements of this section if the 
MCCC program— 
‘‘(1) coordinates, integrates, and provides for 
the furnishing of the full range of MCCC program 
services to eligible children enrolled in the program; 
‘‘(2) enrolls eligible children in accordance with 
subsection (c); 
‘‘(3) is operating under a program agreement 
that meets the requirements of subsection (d); and 
‘‘(4) meets the pediatric network adequacy 
standards developed under subsection (e). 
‘‘(c) 
ELIGIBILITY
DETERMINATIONS; 
ASSIGN-
MENT.— 
‘‘(1) ENROLLMENT.—Subject to the assignment 
requirements of paragraph (2), the enrollment and 
disenrollment of eligible children in an MCCC pro-
gram shall be carried out in accordance with regula-
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tions issued by the Secretary and the applicable pro-
gram agreement. 
‘‘(2) NETWORK ASSIGNMENT.— 
‘‘(A) IN GENERAL.—Eligible children shall 
be prospectively enrolled in an MCCC program 
by initially assigning such eligible children to a 
nationally designated children’s hospital net-
work for a period of not less than 90 days be-
ginning on the date on which the child is ini-
tially assigned to such hospital network. 
‘‘(B) BASIS FOR INITIAL ASSIGNMENT.— 
Such an assignment shall be based upon any of 
the following factors (or a combination thereof): 
‘‘(i) The prevalence of visits by the 
child to a pediatrician or other specialist 
who is participating in the nationally des-
ignated children’s hospital network. 
‘‘(ii) The selection of the child’s fam-
ily. 
‘‘(iii) The location of the primary resi-
dence of the child. 
‘‘(iv) The proximity of the child to re-
gional referral networks established by the 
nationally designated children’s hospital 
network. 
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‘‘(C) LIMITATION
ON
CERTAIN
ASSIGN-
MENTS.—An assignment of a child under clause 
(iii) or (iv) of subparagraph (B) may only be 
made in the case of a nationally designated chil-
dren’s hospital network that offers medical 
home access within 30 miles of the primary res-
idence of the child. 
‘‘(D) REASSIGNMENT.—Following the 90- 
day period referred to in subparagraph (A), the 
child may elect— 
‘‘(i) to be assigned to the nationally 
designated children’s hospital network of 
their choice that has an MCCC program 
agreement in effect with respect to an 
MCCC program in which the child is eligi-
ble to enroll; or 
‘‘(ii) to not participate in any MCCC 
program and receive care through enroll-
ment in the State plan under this title or 
the State child health plan under title 
XXI. 
‘‘(d) PROGRAM AGREEMENTS.— 
‘‘(1) IN GENERAL.—The Secretary, in close co-
operation with the State administering agencies 
electing to provide the medical assistance described 
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in subsection (a), shall establish procedures for en-
tering into, extending, and terminating program 
agreements under this section. 
‘‘(2) TERMS.— 
‘‘(A) IN GENERAL.—A program agreement 
entered into under this section by the Sec-
retary, a State administering agency, and a na-
tionally designated children’s hospital network 
shall provide for each of the following terms: 
‘‘(i) The agreement shall designate 
the service area of the MCCC program 
that is the subject of the agreement. 
‘‘(ii) The agreement shall be effective 
for a contract year, but may be extended 
for additional contract years in the absence 
of a notice by a party to terminate, and is 
subject to termination by the Secretary 
and the State administering agency at any 
time for cause (as provided under the 
agreement). 
‘‘(iii) The agreement shall require 
that the nationally designated children’s 
hospital network submit care management 
network and coverage plans to the Sec-
retary that are centered around medical 
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home models and that describe the govern-
ance of the network. 
‘‘(iv) The agreement shall require the 
hospital network to meet all applicable re-
quirements imposed by State and local 
laws. 
‘‘(v) The agreement shall require such 
State, in the case of eligible children who 
are residents of the State, to make pay-
ments to the hospital network, regardless 
of whether MCCC program services are 
furnished to such eligible children in an-
other State. 
‘‘(vi) The agreement shall require that 
the standards and measures developed 
under subsection (e) be applied to the hos-
pital network, including measures requir-
ing, with respect to network adequacy 
standards, that the hospital network estab-
lish such provider networks for primary, 
secondary, and tertiary care as are nec-
essary to ensure the adequate furnishing of 
MCCC program services to eligible children 
enrolled in the MCCC program that is the 
subject of the agreement. 
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‘‘(vii) The agreement shall require the 
hospital network to comply with the data 
collection and recordkeeping requirements 
of subparagraph (C). 
‘‘(viii) The agreement shall require 
the hospital network to accept as payment 
any payment made using the risk-based 
methodology developed under subsection 
(g). 
‘‘(ix) The agreement shall contain 
such additional terms and conditions as 
the parties may agree to, so long as such 
terms and conditions are consistent with 
this section. 
‘‘(B) SERVICE AREA OVERLAP.—In desig-
nating a service area under subparagraph 
(A)(i), the Secretary (in consultation with the 
relevant State administering agency) shall con-
sider the impacts of designating an area that is 
already covered under another program agree-
ment, for purposes of avoiding the unnecessary 
duplication of services and the impairment of 
the financial and service viability of another 
MCCC program. 
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‘‘(C) DATA
AND
RECORDKEEPING
RE-
QUIREMENTS.—The data collection and record-
keeping requirements under this subparagraph, 
with respect to a nationally designated chil-
dren’s hospital network, are as follows: 
‘‘(i) The hospital network shall collect 
claims data on claims submitted with re-
spect to eligible children who are furnished 
MCCC program services under an MCCC 
program. Such data shall be reported in a 
standardized format and made available to 
the public for purposes of establishing a 
national database on such claims. 
‘‘(ii) The hospital network shall main-
tain, and provide the Secretary and the 
State administering agency access to, the 
records relating to the MCCC program op-
erated by the hospital network, including 
pertinent financial, medical, and personnel 
records. 
‘‘(iii) The hospital network shall sub-
mit to the Secretary and the State admin-
istering agency such reports as the Sec-
retary finds (in consultation with the State 
administering agency) necessary to monitor 
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the operation, cost, and effectiveness of the 
MCCC program operated by the hospital 
network. 
‘‘(3) TERMINATION
OF
AGREEMENTS.—The 
Secretary shall issue regulations establishing the cir-
cumstances under which— 
‘‘(A) the Secretary or a State admin-
istering agency may terminate an MCCC pro-
gram agreement for cause; and 
‘‘(B) a nationally designated children’s 
hospital network may terminate such an agree-
ment after appropriate notice to the Secretary, 
the State administering agency, and enrollees. 
‘‘(e) QUALITY ASSURANCE.— 
‘‘(1) DEVELOPMENT OF STANDARDS AND MEAS-
URES.—The Secretary shall, in consultation with na-
tionally designated children’s hospital networks and 
national pediatric policy organizations (such as the 
Children’s Hospital Association and the American 
Academy of Pediatrics)— 
‘‘(A) establish a national set of quality as-
surance and improvement protocols and proce-
dures to apply under MCCC programs; 
‘‘(B) develop pediatric quality measures; 
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‘‘(C) develop pediatric network adequacy 
standards for access by eligible children to 
MCCC program services; and 
‘‘(D) develop criteria for national pediatric- 
focused care coordination for eligible children. 
‘‘(2) USE
OF
PQMP
MEASURES.—In carrying 
out subparagraph (A), the Secretary shall apply, to 
the extent applicable, child health quality measures 
and measures for centers of excellence for children 
with complex needs developed under this title, title 
XXI, and section 1139A and take into account 
HEDIS quality measures as required under section 
1852(e)(3) and other quality measures. 
‘‘(f) STANDARD MEDICAID DATA SET.— 
‘‘(1) IN GENERAL.—The Secretary, the States, 
and the nationally designated children’s hospital net-
works shall collaborate to obtain consistent and 
verifiable Medicaid Analytic Extract data or a com-
parable data set and shall establish data-sharing 
agreements to further support collaborative planning 
and care coordination for medically complex chil-
dren. 
‘‘(2) CLAIMS ANALYSIS.—The Secretary shall— 
‘‘(A) perform claims analysis on the data 
set developed under paragraph (1) to determine 
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the utilization of items and services furnished 
under an MCCC program to eligible children; 
and 
‘‘(B) submit to Congress and make pub-
licly available on the Internet site of the Cen-
ters for Medicare and Medicaid services, a re-
port on such claims in a standardized format 
for purposes of building a national database. 
‘‘(3) PAYMENT FOR REPORTING INCENTIVES.— 
The Secretary may provide for pay-for-reporting in-
centives during the first two years of any MCCC 
program agreement entered into under this section 
to ensure participation and analysis of consistent 
data under this paragraph to enable the development 
of an appropriate risk-based payment methodology 
under subsection (g). 
‘‘(g) PAYMENTS TO NATIONALLY DESIGNATED CHIL-
DREN’S HOSPITAL NETWORKS.— 
‘‘(1) IN GENERAL.—The State plan shall pro-
vide for payment to nationally designated children’s 
hospital networks pursuant to the terms of an 
MCCC program agreement using a risk-based pay-
ment methodology (or methodologies) established by 
the Secretary in accordance with this subsection. 
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