quality of care provided within a health home 
pursuant to this section. Such strategy shall 
take into account the following quality meas-
ures that may be applicable for health homes 
that serve children with medically complex con-
ditions: 
‘‘(i) Child health quality measures and 
measures for centers of excellence for chil-
dren with complex needs developed under 
this title, title XXI, and section 1139A. 
‘‘(ii) The Healthcare Effectiveness 
Data and Information Set (HEDIS). 
‘‘(iii) The health home’s expertise in 
providing, integrating, or coordinating 
prompt care for children with complex 
medical conditions, including access to pe-
diatric emergency services at all times. 
‘‘(iv) The health home’s ability to co-
ordinate and integrate the full range of pe-
diatric medical, surgical, and behavioral 
specialists and subspecialists needed, based 
on clinical qualifications (such as board 
certification) and patient preference on the 
care team to care for children with com-
plex medical conditions, as well as pro-
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viders offering specialized services, such as 
rehabilitative and habilitative health care 
and private-duty nursing, if needed. 
‘‘(v) The health home’s ability to co-
ordinate the provision of outpatient care 
needs, including durable medical equip-
ment, medical supplies, and medical foods, 
if needed. 
‘‘(vi) The health home’s ability to ar-
range and coordinate care for children with 
complex medical conditions from out-of- 
State providers to the maximum extent 
practicable for the families of such children 
and where medically necessary in accord-
ance with the guidance from the Adminis-
trator of the Centers for Medicare & Med-
icaid Services issued pursuant to section 4 
of the ACE Kids Act. 
‘‘(vii) The health home’s ability to co-
ordinate and collect payments from liable 
third parties (including parties described in 
section 1902(a)(25)(A)) for care and serv-
ices provided or arranged for by the entity. 
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‘‘(viii) The health home’s ability to 
collect and report on the information re-
quired under subsection (d)(1). 
‘‘(c) COORDINATING CARE.— 
‘‘(1) HOSPITAL REFERRALS.—A State shall in-
clude in the State plan amendment under this sec-
tion— 
‘‘(A) a requirement for hospitals partici-
pating under the State plan under this title or 
a waiver of such plan to establish procedures 
for hospital emergency departments to refer 
children with medically complex conditions en-
rolled in a health home pursuant to this section 
to designated providers or teams of health care 
professionals who are participating in such 
health home; and 
‘‘(B) a requirement for the State to notify 
such hospitals of any designated providers or 
teams of health care professionals who are par-
ticipating in a health home. 
‘‘(2) EDUCATION
WITH
RESPECT
TO
AVAIL-
ABILITY
OF
HEALTH
HOME
SERVICES.—A State 
shall include in the State plan amendment under 
this section a description of the State’s process for 
educating providers participating in the State plan 
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under this title or a waiver of such plan about the 
availability of health home services for children with 
medically complex conditions, including the process 
by which such providers can refer such children to 
designated providers (or a team of health care pro-
fessionals) to receive such services. 
‘‘(3) FAMILY
EDUCATION.—A State shall in-
clude in the State plan amendment under this sec-
tion a description of the State’s process for edu-
cating families with children eligible to receive health 
home services pursuant to this section of the avail-
ability of such services. Such process may include 
the participation of family-to-family entities or other 
public or private organizations or entities who pro-
vide outreach and information about the availability 
of health care items and services to families of indi-
viduals eligible to receive medical assistance under 
the State plan under this title (or a waiver of the 
plan). 
‘‘(4) COORDINATING CARE FROM OUT-OF-STATE 
PROVIDERS.— 
‘‘(A) IN
GENERAL.—A State electing to 
provide medical assistance pursuant to sub-
section (a) shall provide guidance, consistent 
with guidance from the Administrator of the 
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Centers for Medicare & Medicaid Services 
issued pursuant to section 4 of the ACE Kids 
Act, to designated providers, or teams of health 
care professionals, receiving payment under this 
section, regarding the State’s policies and pro-
cedures for accessing care for children with 
medically complex conditions from out-of-State 
providers. The guidance provided by the State 
under the preceding sentence shall include in-
formation on how out-of-State providers who 
provide services to children with medically com-
plex conditions enrolled in a health home in 
such State pursuant to this section may receive 
payment under the State plan under this title 
(or a waiver of the plan). 
‘‘(B) BEST PRACTICES.—A State electing 
to provide medical assistance pursuant to sub-
section (a) shall, to the extent practicable, 
adopt best practices for providing access to out- 
of-State providers for children with medically 
complex conditions consistent with guidance 
issued by the Administrator of the Centers for 
Medicare & Medicaid Services pursuant to sec-
tion 4 of the ACE Kids Act. The Administrator 
of the Centers for Medicare & Medicaid Serv-
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ices shall make available on a public Internet 
website of the Centers for Medicare & Medicaid 
Services a list of the States with a State plan 
amendment approved under this section and the 
degree to which (as determined by the Adminis-
trator) such States have adopted the best prac-
tices recommended by the Administrator in 
such guidance. 
‘‘(C) MENTAL HEALTH COORDINATION.—A 
State shall consult and coordinate, as appro-
priate, with the Assistant Secretary for Mental 
Health and Substance Use, in addressing issues 
regarding the prevention and treatment of men-
tal illness and substance use among children 
with medically complex conditions receiving 
home health services pursuant to this section. 
‘‘(D) FAILURE TO IMPLEMENT BEST PRAC-
TICES.—Beginning 180 days after the date on 
which guidance is issued by the Administrator 
of the Centers for Medicare & Medicaid Serv-
ices pursuant to section 4 of the ACE Kids Act, 
in the case of a State with a State plan amend-
ment approved under this section that the Ad-
ministrator of the Centers for Medicare & Med-
icaid Services determines has not adopted the 
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best practices recommended by the Adminis-
trator in such guidance, the increase of the 
Federal medical assistance percentage applied 
under subsection (b)(1) shall be reduced by 10 
percentage points. 
‘‘(d) DATA COLLECTION.— 
‘‘(1) PROVIDER REPORTING REQUIREMENTS.— 
As a condition of receiving payment under this sec-
tion, a designated provider or team of health care 
professionals receiving payment for health home 
services under this section shall report to the State 
the following information: 
‘‘(A) With respect to each such provider or 
team, the name, National Provider Identifica-
tion number, address, and specific health care 
services offered to be provided to children with 
medically complex conditions enrolled in the 
health home involved. 
‘‘(B) Information on all applicable meas-
ures used by such provider or team for pur-
poses of assisting in assessing the quality and 
effectiveness of such services. 
‘‘(C) Other such information as the Ad-
ministrator of the Centers for Medicare & Med-
icaid Services shall specify in guidance. 
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‘‘(2) STATE
REPORTING
REQUIREMENTS.—A 
State electing to provide medical assistance pursuant 
to subsection (a) shall collect and provide to the Ad-
ministrator of the Centers for Medicare & Medicaid 
Services (and to the Medicaid and CHIP Payment 
and Access Commission upon request), in a form 
and manner determined by the Administrator to be 
reasonable and minimally burdensome, the following 
information: 
‘‘(A) Information reported under para-
graph (1). 
‘‘(B) The number of children with medi-
cally complex conditions who have selected a 
health home or for whom a health home was se-
lected pursuant to this section. 
‘‘(C) The nature, number, and prevalence 
of chronic conditions, life-threatening illnesses, 
disabilities, or rare diseases that such children 
have. 
‘‘(D) The type of delivery systems and pay-
ment models used to provide services to such 
children under this section. 
‘‘(E) The number and characteristics of 
providers or health care professionals des-
ignated as health homes pursuant to this sec-
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tion, including the number and characteristics 
of out-of-State providers or health care profes-
sionals who provide health care items and serv-
ices to such children. 
‘‘(F) The extent to which such children re-
ceive health care items and services under a 
State plan under this title or a waiver of such 
plan from out-of-State providers, and the extent 
to which such services were provided on an 
emergency or non-emergency basis. 
‘‘(G) Quality measures developed specifi-
cally with respect to health care items and serv-
ices furnished to children with medically com-
plex conditions. 
‘‘(e) DEFINITIONS.—In this section: 
‘‘(1) CHILD WITH MEDICALLY COMPLEX CONDI-
TIONS.— 
‘‘(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 under this title or 
under a waiver of such plan; and 
‘‘(ii) has at least— 
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‘‘(I) 1 chronic condition that af-
fects three or more organ systems and 
severely reduces cognitive or physical 
functioning (such as the ability to eat, 
drink, or breathe independently) and 
which also requires the use of medica-
tion, durable medical equipment, ther-
apy, surgery, or other treatment or 
treatments; or 
‘‘(II) 1 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. 
360fff(a)(3))), such as a form of can-
cer. 
‘‘(B) RULE OF CONSTRUCTION.—Nothing 
in this paragraph shall prevent a State with a 
State plan amendment approved under this sec-
tion, with respect to determining the eligibility 
of a children with medically complex conditions 
to receive health home services under such 
State plan amendment, from increasing the 
number or severity of chronic conditions, life- 
threatening illnesses, disabilities, or rare dis-
eases. 
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‘‘(2) CHRONIC CONDITION.—The term ‘chronic 
condition’ means a serious, long-term physical, men-
tal, or developmental disability or disease, such as 
any of 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 or a team of health 
care professionals selected to provide health home 
services to a child with medically complex conditions. 
‘‘(4) HEALTH HOME SERVICES.— 
‘‘(A) IN
GENERAL.—The term ‘health 
home services’ means the services described in 
subparagraph (B) that are provided by a des-
ignated provider, or a team of health care pro-
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fessionals in a timely manner and on a high- 
quality basis. 
‘‘(B) SERVICES DESCRIBED.—The services 
described in this subparagraph shall, at a min-
imum, include— 
‘‘(i) an individualized comprehensive 
pediatric family-centered care plan for each 
child with complex medical conditions as-
signed to the health home that provides 
seamless pediatric care coordination by a 
customized care team with a designated 
team lead for each such child and the 
child’s family; 
‘‘(ii) care coordination, health pro-
motion, and providing access to the full 
range of pediatric specialty and sub-
specialty medical services, including early 
and periodic screening, diagnostic, and 
treatment services described in section 
1905(a)(4)(B) and services from out-of- 
State providers, as medically necessary; 
‘‘(iii) comprehensive transitional care, 
including appropriate follow-up, from inpa-
tient to other settings; 
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‘‘(iv) working with the family of each 
child with complex medical conditions as-
signed to the health home to develop and 
incorporate ongoing home care, community 
based pediatric primary care, care from the 
most medically appropriate or family-pre-
ferred children’s hospital, social support 
services, and local hospital pediatric emer-
gency care into the child’s care plan, to the 
extent consistent with family choice and 
the needs of the child; 
‘‘(v) referrals to community and social 
support services, if relevant; 
‘‘(vi) use of health information tech-
nology to link services, as feasible and ap-
propriate; 
‘‘(vii) in the case of a State that, as 
of the date of the enactment of the ACE 
Kids Act, provides under the State plan 
under this title (or a waiver of such plan) 
for palliative services, palliative services; 
‘‘(viii) efforts to include, with respect 
to the delivery of care and the develop-
ment, operation, and evaluation of the 
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health home’s services, the families of chil-
dren with complex medical conditions; 
‘‘(ix) ensuring that any interactions 
with each child with complex medical con-
ditions and the child’s family occurs in a 
culturally and linguistically appropriate 
manner; and 
‘‘(x) providing integration with, and 
access to, subspecialized pediatric services 
and programs for children with complex 
medical conditions, including the most in-
tensive diagnostic, treatment, and critical 
care levels as medically necessary and ap-
propriate out-of-State care. 
‘‘(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 of Health and Human Services), rural 
clinic, community health center, community mental 
health center, home health agency, or any other enti-
ty or provider that is determined by the State and 
approved by the Administrator of the Centers for 
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Medicare & Medicaid Services to be qualified to be 
a health home for children with medically complex 
conditions on the basis of documentation evidencing 
that the entity has the systems, expertise, and infra-
structure in place to provide 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.— 
‘‘(A) IN
GENERAL.—The term ‘team of 
health care professionals’ means a team of 
health care professionals (as described in the 
State plan amendment under this section) that 
may— 
‘‘(i) include physicians and other pro-
fessionals, such as pediatricians or pedi-
atric specialty or subspecialty providers, 
nurse care coordinators, dietitians, nutri-
tionists, social workers, behavioral health 
professionals, physical therapists, occupa-
tional 
therapists, 
speech 
pathologists, 
nurses, individuals with experience in med-
ical supportive technologies, or any profes-
sionals determined to be appropriate by the 
State and approved by the Administrator 
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of the Centers for Medicare & Medicaid 
Services; and 
‘‘(ii) be free standing, virtual, or 
based at a children’s hospital, hospital, 
community health center, community men-
tal health center, rural clinic, clinical prac-
tice or clinical group practice, academic 
health center, or any entity determined to 
be appropriate by the State and approved 
by the Administrator of the Centers for 
Medicare & Medicaid Services. 
‘‘(B) INCLUSION.—Such term includes— 
‘‘(i) an entity or individual who is des-
ignated to coordinate such team; and 
‘‘(ii) 
community 
health 
workers, 
translators, and other individuals with cul-
turally-appropriate expertise.’’. 
SEC. 3. RULE OF CONSTRUCTION ON FREEDOM OF CHOICE. 
Nothing in section 1947 of the Social Security Act 
(as added by section 2 of this Act) may be construed, with 
respect to children with medically complex conditions (as 
defined in such section 1947), to limit the choice of such 
children or their families to participate (or not participate 
in) a health home (as defined in such section 1947). 
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SEC. 4. GUIDANCE ON COORDINATING CARE FROM OUT-OF- 
STATE PROVIDERS. 
(a) IN GENERAL.—Not later than one year after the 
date of the enactment of this Act, the Administrator of 
the Centers for Medicare & Medicaid Services shall issue 
guidance to State Medicaid Directors on best practices for 
using out-of-State providers to provide care to children 
with medically complex conditions (as defined in section 
1947 of the Social Security Act, as added by section 2 
of this Act), including guidance regarding— 
(1) arranging access to, and providing payment 
for, care for such children furnished by such out-of- 
State providers (including when provided in emer-
gency and non-emergency situations); 
(2) reducing barriers for such children receiving 
care from such providers in a timely fashion; and 
(3) processes for screening and enrolling such 
providers in the State plan under title XIX of the 
Social Security Act (or a waiver of the plan), includ-
ing efforts to streamline such processes or reduce 
the burden of such processes on providers. 
(b) STAKEHOLDER INPUT.—In carrying out sub-
section (a), the Administrator of the Centers for Medicare 
& Medicaid Services shall issue a request for information 
to seek input from children with medically complex condi-
tions (as defined in section 1947 of the Social Security 
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