I 
116TH CONGRESS 
1ST SESSION H. R. 1226 
To amend title XIX of the Social Security Act to provide States with the 
option of providing coordinated care for children with complex medical 
conditions through a health home. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 14, 2019 
Ms. CASTOR of Florida (for herself, Mr. BILIRAKIS, Ms. ESHOO, and Ms. 
HERRERA BEUTLER) 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 with the option of providing coordinated care for 
children with complex medical conditions through a 
health home. 
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 ‘‘Advancing Care for 
Exceptional Kids Act of 2019’’ or the ‘‘ACE Kids Act of 
2019’’. 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00001
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
SEC. 2. STATE OPTION TO PROVIDE COORDINATED CARE 
THROUGH A HEALTH HOME FOR CHILDREN 
WITH MEDICALLY COMPLEX CONDITIONS. 
Title XIX of the Social Security Act (42 U.S.C. 1396 
et seq.) is amended by inserting after section 1945 the 
following new section: 
‘‘SEC. 1945A. STATE OPTION TO PROVIDE COORDINATED 
CARE THROUGH A HEALTH HOME FOR CHIL-
DREN WITH MEDICALLY COMPLEX CONDI-
TIONS. 
‘‘(a) 
IN
GENERAL.—Notwithstanding 
section 
1902(a)(1) (relating to statewideness) and section 
1902(a)(10)(B) (relating to comparability), beginning Oc-
tober 1, 2022, a State, at its option as a State plan 
amendment, may provide for medical assistance under this 
title to children with medically complex conditions who 
choose to enroll in a health home under this section by 
selecting a designated provider, a team of health care pro-
fessionals operating with such a provider, or a health team 
as the child’s health home for purposes of providing the 
child with health home services. 
‘‘(b) HEALTH HOME QUALIFICATION STANDARDS.— 
The Secretary shall establish standards for qualification 
as a health home for purposes of this section. Such stand-
ards shall include requiring designated providers, teams 
of health care professionals operating with such providers, 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00002
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
and health teams to demonstrate to the State the ability 
to do the following: 
‘‘(1) Coordinate prompt care for children with 
medically complex conditions, including access to pe-
diatric emergency services at all times. 
‘‘(2) Develop an individualized comprehensive 
pediatric family-centered care plan for children with 
medically complex conditions that accommodates pa-
tient preferences. 
‘‘(3) Work in a culturally and linguistically ap-
propriate manner with the family of a child with 
medically complex conditions to develop and incor-
porate into such child’s care plan, in a manner con-
sistent with the needs of the child and the choices 
of the child’s family, ongoing home care, community- 
based pediatric primary care, pediatric inpatient 
care, social support services, and local hospital pedi-
atric emergency care. 
‘‘(4) Coordinate access to— 
‘‘(A) subspecialized pediatric services and 
programs for children with medically complex 
conditions, including the most intensive diag-
nostic, treatment, and critical care levels as 
medically necessary; and 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00003
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
‘‘(B) palliative services if the State pro-
vides such services under the State plan (or a 
waiver of such plan). 
‘‘(5) Coordinate care for children with medically 
complex conditions with out-of-State providers fur-
nishing care to such children to the maximum extent 
practicable for the families of such children and 
where medically necessary, in accordance with guid-
ance issued under subsection (e)(1) and section 
431.52 of title 42, Code of Federal Regulations. 
‘‘(6) Collect and report information under sub-
section (g)(1). 
‘‘(c) PAYMENTS.— 
‘‘(1) IN GENERAL.—A State shall provide a des-
ignated provider, a team of health care professionals 
operating with such a provider, or a health team 
with payments for the provision of health home serv-
ices to each child with medically complex conditions 
that selects such provider, team of health care pro-
fessionals, or health team as the child’s health home. 
Payments made to a designated provider, a team of 
health care professionals operating with such a pro-
vider, or a health team for such services shall be 
treated as medical assistance for purposes of section 
1903(a), except that, during the first 2 fiscal year 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00004
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
quarters that the State plan amendment is in effect, 
the Federal medical assistance percentage applicable 
to such payments shall be increased by 15 percent-
age points, but in no case may exceed 90 percent. 
‘‘(2) METHODOLOGY.— 
‘‘(A) IN GENERAL.—The State shall speci-
fy in the State plan amendment the method-
ology the State will use for determining pay-
ment for the provision of health home services. 
Such methodology for determining payment— 
‘‘(i) may be tiered to reflect, with re-
spect to each child with medically complex 
conditions provided such services by a des-
ignated provider, a team of health care 
professionals operating with such a pro-
vider, or a health team, the severity or 
number of each such child’s chronic condi-
tions, life-threatening illnesses, disabilities, 
or rare diseases, or the specific capabilities 
of the provider, team of health care profes-
sionals, or health team; and 
‘‘(ii) shall be established consistent 
with section 1902(a)(30)(A). 
‘‘(B) ALTERNATE MODELS OF PAYMENT.— 
The methodology for determining payment for 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00005
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
provision of health home services under this 
section shall not be limited to a per-member 
per-month basis and may provide (as proposed 
by the State and subject to approval by the 
Secretary) for alternate models of payment. 
‘‘(3) PLANNING GRANTS.— 
‘‘(A) IN GENERAL.—Beginning October 1, 
2022, the Secretary may award planning grants 
to States for purposes of developing a State 
plan amendment under this section. A planning 
grant awarded to a State under this paragraph 
shall remain available until expended. 
‘‘(B) STATE
CONTRIBUTION.—A State 
awarded a planning grant shall contribute an 
amount equal to the State percentage deter-
mined under section 1905(b) (without regard to 
section 5001 of Public Law 111–5) for each fis-
cal year for which the grant is awarded. 
‘‘(C) LIMITATION.—The total amount of 
payments made to States under this paragraph 
shall not exceed $5,000,000. 
‘‘(d) COORDINATING CARE.— 
‘‘(1) HOSPITAL NOTIFICATION.—A State with a 
State plan amendment approved under this section 
shall require each hospital that is a participating 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00006
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
provider under the State plan (or a waiver of such 
plan) to establish procedures for, in the case of a 
child with medically complex conditions who is en-
rolled in a health home pursuant to this section and 
seeks treatment in the emergency department of 
such hospital, notifying the health home of such 
child of such treatment. 
‘‘(2) EDUCATION
WITH
RESPECT
TO
AVAIL-
ABILITY OF HEALTH HOME SERVICES.—In order for 
a State plan amendment to be approved under this 
section, a State shall include in the State plan 
amendment a description of the State’s process for 
educating providers participating in the State plan 
(or a waiver of such plan) on the availability of 
health home services for children with medically 
complex conditions, including the process by which 
such providers can refer such children to a des-
ignated provider, team of health care professionals 
operating such a provider, or health team for the 
purpose of establishing a health home through which 
such children may receive such services. 
‘‘(3) FAMILY EDUCATION.—In order for a State 
plan amendment to be approved under this section, 
a State shall include in the State plan amendment 
a description of the State’s process for educating 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00007
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
families with children eligible to receive health home 
services pursuant to this section of the availability of 
such services. Such process shall include the partici-
pation of family-to-family entities or other public or 
private organizations or entities who provide out-
reach and information on the availability of health 
care items and services to families of individuals eli-
gible to receive medical assistance under the State 
plan (or a waiver of such plan). 
‘‘(4) MENTAL
HEALTH
COORDINATION.—A 
State with a State plan amendment approved under 
this section shall consult and coordinate, as appro-
priate, with the Secretary in addressing issues re-
garding the prevention and treatment of mental ill-
ness and substance use among children with medi-
cally complex conditions receiving health home serv-
ices under this section. 
‘‘(e) GUIDANCE
ON COORDINATING CARE FROM 
OUT-OF-STATE PROVIDERS.— 
‘‘(1) IN GENERAL.—Not later than October 1, 
2020, the Secretary shall issue (and update as the 
Secretary determines necessary) guidance to State 
Medicaid directors on— 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00008
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
‘‘(A) best practices for using out-of-State 
providers to provide care to children with medi-
cally complex conditions; 
‘‘(B) coordinating care for such children 
provided by such out-of-State providers (includ-
ing when provided in emergency and non-emer-
gency situations); 
‘‘(C) reducing barriers for such children 
receiving care from such providers in a timely 
fashion; and 
‘‘(D) processes for screening and enrolling 
such providers in the respective State plan (or 
a waiver of such plan), including efforts to 
streamline such processes or reduce the burden 
of such processes on such providers. 
‘‘(2) STAKEHOLDER
INPUT.—In carrying out 
paragraph (1), the Secretary shall issue a request 
for information to seek input from children with 
medically complex conditions and their families, 
States, providers (including children’s hospitals, hos-
pitals, pediatricians, and other providers), managed 
care plans, children’s health groups, family and ben-
eficiary advocates, and other stakeholders with re-
spect to coordinating the care for such children pro-
vided by out-of-State providers. 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00009
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
‘‘(f) MONITORING.—A State shall include in the State 
plan amendment— 
‘‘(1) a methodology for tracking reductions in 
inpatient days and reductions in the total cost of 
care resulting from improved care coordination and 
management under this section; 
‘‘(2) a proposal for use of health information 
technology in providing health home services under 
this section and improving service delivery and co-
ordination across the care continuum (including the 
use of wireless patient technology to improve coordi-
nation and management of care and patient adher-
ence to recommendations made by their provider); 
and 
‘‘(3) a methodology for tracking prompt and 
timely access to medically necessary care for children 
with medically complex conditions from out-of-State 
providers. 
‘‘(g) DATA COLLECTION.— 
‘‘(1) PROVIDER REPORTING REQUIREMENTS.— 
In order to receive payments from a State under 
subsection (c), a designated provider, a team of 
health care professionals operating with such a pro-
vider, or a health team shall report to the State, at 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00010
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
such time and in such form and manner as may be 
required by the State, the following information: 
‘‘(A) With respect to each such provider, 
team of health care professionals, or health 
team, the name, National Provider Identifica-
tion number, address, and specific health care 
services offered to be provided to children with 
medically complex conditions who have selected 
such provider, team of health care profes-
sionals, or health team as the health home of 
such children. 
‘‘(B) Information on all applicable meas-
ures for determining the quality of health home 
services provided by such provider, team of 
health care professionals, or health team, in-
cluding, to the extent applicable, child health 
quality measures and measures for centers of 
excellence for children with complex needs de-
veloped under this title, title XXI, and section 
1139A. 
‘‘(C) Such other information as the Sec-
retary shall specify in guidance. 
When appropriate and feasible, such provider, team 
of health care professionals, or health team, as the 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00011
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
case may be, shall use health information technology 
in providing the State with such information. 
‘‘(2) STATE REPORTING REQUIREMENTS.— 
‘‘(A) COMPREHENSIVE REPORT.—A State 
with a State plan amendment approved under 
this section shall report to the Secretary (and, 
upon request, to the Medicaid and CHIP Pay-
ment and Access Commission), at such time 
and in such form and manner determined by 
the Secretary to be reasonable and minimally 
burdensome, the following information: 
‘‘(i) Information reported under para-
graph (1). 
‘‘(ii) The number of children with 
medically complex conditions who have se-
lected a health home pursuant to this sec-
tion. 
‘‘(iii) The nature, number, and preva-
lence of chronic conditions, life-threatening 
illnesses, disabilities, or rare diseases that 
such children have. 
‘‘(iv) The type of delivery systems and 
payment models used to provide services to 
such children under this section. 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00012
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
‘‘(v) The number and characteristics 
of designated providers, teams of health 
care professionals operating with such pro-
viders, and health teams selected as health 
homes pursuant to this section, including 
the number and characteristics of out-of- 
State providers, teams of health care pro-
fessionals operating with such providers, 
and health teams who have provided health 
care items and services to such children. 
‘‘(vi) The extent to which such chil-
dren receive health care items and services 
under the State plan. 
‘‘(vii) Quality measures developed spe-
cifically with respect to health care items 
and services provided to children with 
medically complex conditions. 
‘‘(B) REPORT ON BEST PRACTICES.—Not 
later than 90 days after a State has a State 
plan amendment approved under this section, 
such State shall submit to the Secretary, and 
make publicly available on the appropriate 
State website, a report on how the State is im-
plementing guidance issued under subsection 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00013
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
(e)(1), including through any best practices 
adopted by the State. 
‘‘(h) RULE OF CONSTRUCTION.—Nothing in this sec-
tion may be construed— 
‘‘(1) to require a child with medically complex 
conditions to enroll in a health home under this sec-
tion; 
‘‘(2) to limit the choice of a child with medically 
complex conditions in selecting a designated pro-
vider, team of health care professionals operating 
with such a provider, or health team that meets the 
health home qualification standards established 
under subsection (b) as the child’s health home; or 
‘‘(3) to reduce or otherwise modify— 
‘‘(A) the entitlement of children with medi-
cally complex conditions to early and periodic 
screening, diagnostic, and treatment services 
(as defined in section 1905(r)); or 
‘‘(B) the informing, providing, arranging, 
and reporting requirements of a State under 
section 1902(a)(43). 
‘‘(i) DEFINITIONS.—In this section: 
‘‘(1) CHILD WITH MEDICALLY COMPLEX CONDI-
TIONS.— 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00014
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
‘‘(A) IN
GENERAL.—Subject to subpara-
graph (B), the term ‘child with medically com-
plex conditions’ means an individual under 21 
years of age who— 
‘‘(i) is eligible for medical assistance 
under the State plan (or under a waiver of 
such plan); and 
‘‘(ii) has at least— 
‘‘(I) one or more chronic condi-
tions that cumulatively affect three or 
more organ systems and severely re-
duces cognitive or physical functioning 
(such as the ability to eat, drink, or 
breathe independently) and that also 
requires the use of medication, dura-
ble medical equipment, therapy, sur-
gery, or other treatments; or 
‘‘(II) one life-limiting illness or 
rare pediatric disease (as defined in 
section 529(a)(3) of the Federal 
Food, Drug, and Cosmetic Act (21 
U.S.C. 360ff(a)(3))). 
‘‘(B) RULE OF CONSTRUCTION.—Nothing 
in this paragraph shall prevent the Secretary 
from establishing higher levels as to the number 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00015
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
or severity of chronic, life threatening illnesses, 
disabilities, rare diseases or mental health con-
ditions for purposes of determining eligibility 
for receipt of health home services under this 
section. 
‘‘(2) CHRONIC CONDITION.—The term ‘chronic 
condition’ means a serious, long-term physical, men-
tal, or developmental disability or disease, including 
the following: 
‘‘(A) Cerebral palsy. 
‘‘(B) Cystic fibrosis. 
‘‘(C) HIV/AIDS. 
‘‘(D) Blood diseases, such as anemia or 
sickle cell disease. 
‘‘(E) Muscular dystrophy. 
‘‘(F) Spina bifida. 
‘‘(G) Epilepsy. 
‘‘(H) Severe autism spectrum disorder. 
‘‘(I) Serious emotional disturbance or seri-
ous mental health illness. 
‘‘(3) HEALTH HOME.—The term ‘health home’ 
means a designated provider (including a provider 
that operates in coordination with a team of health 
care professionals) or a health team selected by a 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00016
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
child with medically complex conditions (or the fam-
ily of such child) to provide health home services. 
‘‘(4) HEALTH HOME SERVICES.— 
‘‘(A) IN
GENERAL.—The term ‘health 
home services’ means comprehensive and timely 
high-quality services described in subparagraph 
(B) that are provided by a designated provider, 
a team of health care professionals operating 
with such a provider, or a health team. 
‘‘(B) SERVICES DESCRIBED.—The services 
described in this subparagraph shall include— 
‘‘(i) comprehensive care management; 
‘‘(ii) care coordination, health pro-
motion, and providing access to the full 
range of pediatric specialty and sub-
specialty medical services, including serv-
ices from out-of-State providers, as medi-
cally necessary; 
‘‘(iii) comprehensive transitional care, 
including appropriate follow-up, from inpa-
tient to other settings; 
‘‘(iv) patient and family support (in-
cluding authorized representatives); 
‘‘(v) referrals to community and social 
support services, if relevant; and 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00017
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
‘‘(vi) use of health information tech-
nology to link services, as feasible and ap-
propriate. 
‘‘(5) DESIGNATED PROVIDER.—The term ‘des-
ignated provider’ means a physician (including a pe-
diatrician or a pediatric specialty or subspecialty 
provider), children’s hospital, clinical practice or 
clinical group practice, prepaid inpatient health plan 
or prepaid ambulatory health plan (as defined by the 
Secretary), rural clinic, community health center, 
community mental health center, home health agen-
cy, or any other entity or provider that is deter-
mined by the State and approved by the Secretary 
to be qualified to be a health home for children with 
medically complex conditions on the basis of docu-
mentation evidencing that the entity has the sys-
tems, expertise, and infrastructure in place to pro-
vide health home services. Such term may include 
providers who are employed by, or affiliated with, a 
children’s hospital. 
‘‘(6) 
TEAM
OF
HEALTH
CARE
PROFES-
SIONALS.—The term ‘team of health care profes-
sionals’ means a team of health care professionals 
(as described in the State plan amendment under 
this section) that may— 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00018
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
‘‘(A) include— 
‘‘(i) physicians and other profes-
sionals, such as pediatricians or pediatric 
specialty or subspecialty providers, nurse 
care coordinators, dietitians, nutritionists, 
social workers, behavioral health profes-
sionals, physical therapists, occupational 
therapists, speech pathologists, nurses, in-
dividuals with experience in medical sup-
portive technologies, or any professionals 
determined to be appropriate by the State 
and approved by the Secretary; 
‘‘(ii) an entity or individual who is 
designated to coordinate such a team; and 
‘‘(iii) 
community 
health 
workers, 
translators, and other individuals with cul-
turally appropriate expertise; and 
‘‘(B) be freestanding, virtual, or based at 
a children’s hospital, hospital, community 
health center, community mental health center, 
rural clinic, clinical practice or clinical group 
practice, academic health center, or any entity 
determined to be appropriate by the State and 
approved by the Secretary. 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00019
Fmt 6652
Sfmt 6201
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS
‘‘(7) HEALTH TEAM.—The term ‘health team’ 
has the meaning given such term for purposes of 
section 3502 of Public Law 111–148.’’. 
Æ 
VerDate Sep 11 2014 
04:32 Feb 28, 2019
Jkt 089200
PO 00000
Frm 00020
Fmt 6652
Sfmt 6301
E:\BILLS\H1226.IH
H1226
kjohnson on DSK79L0C42 with BILLS