Advancing Care for Exceptional Kids Act or the ACE Kids Act
This bill amends title XIX (Medicaid) of the Social Security Act to establish a state Medicaid option to provide for medical assistance with respect to coordinated care provided through a health home (i.e., a designated provider or team of health-care professionals) for children with medically complex conditions. A state shall make payments for such health-home services regardless of whether they are provided through a fee-for-service or managed-care system. For an initial period of eight fiscal-year quarters, the federal matching rate applicable to such payments shall be increased by 20 percentage points, not to exceed 90%.
A state that exercises this option shall specify its methodology for determining payment and evaluating quality of care, in accordance with requirements established by the bill. In addition, the state must meet specified requirements regarding hospital referrals, out-of-state providers, education and outreach, data collection, and reporting.
The Centers for Medicare & Medicaid Services must issue guidance on best practices for using out-of-state providers to provide care to children with medically complex conditions.
The Medicaid and Children's Health Insurance Program (CHIP) Payment and Access Commission must report to Congress and to the Department of Health and Human Services on specified matters related to children with medically complex conditions.
[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3325 Introduced in House (IH)]
<DOC>
115th CONGRESS
1st Session
H. R. 3325
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, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
July 20, 2017
Mr. Barton (for himself, Ms. Castor of Florida, Mr. Gene Green of
Texas, Ms. Eshoo, Mr. Reichert, 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, and for other purposes.
Be it enacted by the Senate and House of Representatives 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'' or the ``ACE Kids Act''.
SEC. 2. ESTABLISHMENT OF STATE MEDICAID OPTION TO PROVIDE COORDINATED
CARE THROUGH A HEALTH HOME FOR CHILDREN WITH COMPLEX
MEDICAL CONDITIONS.
Title XIX of the Social Security Act (42 U.S.C. 1396 et seq.) is
amended by adding at the end the following new section:
``state option to provide coordinated care through a health home for
children with complex medical conditions
``Sec. 1947. (a) In General.--Notwithstanding section 1902(a)(1)
(relating to statewideness), section 1902(a)(10)(B) (relating to
comparability), section 1902(a)(23) (relating to freedom of choice),
section 1902(a)(30)(A) (relating to equal access), and any other
provision of this title which the Secretary determines it is necessary
to waive in order to implement this section (other than section
1905(a)(4)(B) (relating to early and periodic screening, diagnostic,
and treatment services)), beginning on January 1, 2018, 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
select (or for whom is selected) a designated provider, or a team of
health care professionals, as the individual's health home for purposes
of providing such children with health home services.
``(b) Payments.--
``(1) In general.--A State shall provide, with respect to
health home services furnished to each child with medically
complex conditions who selects or for whom there is selected a
designated provider or a team as the child's health home
pursuant to this section, to such designated provider or team
with payments for the provision of such health home services.
The State shall make such payments regardless of whether a
child with medically complex conditions described in the
preceding sentence receives health home services under this
section through a fee-for-service or managed care system. Such
payments for such services shall be treated as medical
assistance (as defined in section 1905(a)) for purposes of
payments made under section 1903(a), except that, during the
first 8 fiscal year quarters that the State plan amendment is
in effect, the Federal medical assistance percentage applicable
to such payments shall be increased by 20 percentage points,
but in no case shall exceed 90 percent.
``(2) Methodology.--
``(A) In general.--The State shall specify in the
State plan amendment the methodology the State will use
for determining payment under paragraph (1). Such
methodology for determining payment--
``(i) may be tiered to reflect, with
respect to each child with medically complex
conditions and each designated provider, or
team of health care professionals, the severity
or number of such child's chronic conditions,
life-threatening illnesses, disabilities, or
rare diseases or the specific capabilities of
such provider or such team;
``(ii) shall be established consistent with
section 1902(a)(30)(A); and
``(iii) shall take into account any
feedback the State receives from stakeholders.
``(B) Models of payment.--The methodology under
subparagraph (A) may include payments made on a per-
member, per-month basis and may include shared savings
models, pay-for-performance models, contingency awards
dependent on reducing utilization of emergency
departments, or other incentive-based approaches, as
defined by the State.
``(C) Ensuring high-quality care.--The methodology
under subparagraph (A) shall include the State's
strategy for evaluating the quality of care provided
within a health home pursuant to this section. Such
strategy shall take into account the following quality
measures that may be applicable for health homes that
serve children with medically complex conditions:
``(i) Child health quality measures and
measures for centers of excellence for children
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 pediatric
emergency services at all times.
``(iv) The health home's ability to
coordinate and integrate the full range of
pediatric 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 complex
medical conditions, as well as providers
offering specialized services, such as
rehabilitative and habilitative health care and
private-duty nursing, if needed.
``(v) The health home's ability to
coordinate the provision of outpatient care
needs, including durable medical equipment,
medical supplies, and medical foods, if needed.
``(vi) The health home's ability to arrange
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 accordance with the guidance from
the Administrator of the Centers for Medicare &
Medicaid Services issued pursuant to section 4
of the ACE Kids Act.
``(vii) The health home's ability to
coordinate and collect payments from liable
third parties (including parties described in
section 1902(a)(25)(A)) for care and services
provided or arranged for by the entity.
``(viii) The health home's ability to
collect and report on the information required
under subsection (d)(1).
``(c) Coordinating Care.--
``(1) Hospital referrals.--A State shall include in the
State plan amendment under this section--
``(A) a requirement for hospitals participating
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 enrolled 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 participating in a
health home.
``(2) Education with respect to availability 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 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
professionals) to receive such services.
``(3) Family education.--A State shall include in the State
plan amendment under this section a description of the State's
process for educating families with children eligible to
receive health home services pursuant to this section of the
availability of such services. Such process may include the
participation of family-to-family entities or other public or
private organizations or entities who provide outreach and
information about the availability of health care items and
services to families of individuals 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 subsection (a) shall
provide guidance, consistent with guidance from the
Administrator of the 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 procedures 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 information on how out-of-State providers
who provide services to children with medically complex
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 subsection (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 section 4 of
the ACE Kids Act. The Administrator of the Centers for
Medicare & Medicaid Services 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 Administrator)
such States have adopted the best practices recommended
by the Administrator in such guidance.
``(C) Mental health coordination.--A State shall
consult and coordinate, as appropriate, with the
Assistant Secretary for Mental Health and Substance
Use, in addressing issues regarding the prevention and
treatment of mental illness and substance use among
children with medically complex conditions receiving
home health services pursuant to this section.
``(D) Failure to implement best practices.--
Beginning 180 days after the date on which guidance is
issued by the Administrator of the Centers for Medicare
& Medicaid Services pursuant to section 4 of the ACE
Kids Act, in the case of a State with a State plan
amendment approved under this section that the
Administrator of the Centers for Medicare & Medicaid
Services determines has not adopted the best practices
recommended by the Administrator 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 section, 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 Identification 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 measures used
by such provider or team for purposes of assisting in
assessing the quality and effectiveness of such
services.
``(C) Other such information as the Administrator
of the Centers for Medicare & Medicaid Services shall
specify in guidance.
``(2) State reporting requirements.--A State electing to
provide medical assistance pursuant to subsection (a) shall
collect and provide to the Administrator 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 paragraph (1).
``(B) The number of children with medically complex
conditions who have selected a health home or for whom
a health home was selected 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 payment
models used to provide services to such children under
this section.
``(E) The number and characteristics of providers
or health care professionals designated as health homes
pursuant to this section, including the number and
characteristics of out-of-State providers or health
care professionals who provide health care items and
services to such children.
``(F) The extent to which such children receive
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 specifically with
respect to health care items and services furnished to
children with medically complex conditions.
``(e) Definitions.--In this section:
``(1) Child with medically complex conditions.--
``(A) In general.--Subject to subparagraph (B), the
term `child with medically complex 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--
``(I) 1 chronic condition that
affects 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
medication, durable medical equipment,
therapy, 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
cancer.
``(B) Rule of construction.--Nothing in this
paragraph shall prevent a State with a State plan
amendment approved under this section, 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 diseases.
``(2) Chronic condition.--The term `chronic condition'
means a serious, long-term physical, mental, 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 serious
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 designated provider, or a team of
health care professionals in a timely manner and on a
high-quality basis.
``(B) Services described.--The services described
in this subparagraph shall, at a minimum, include--
``(i) an individualized comprehensive
pediatric family-centered care plan for each
child with complex medical conditions assigned
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 promotion,
and providing access to the full range of
pediatric specialty and subspecialty 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 inpatient
to other settings;
``(iv) working with the family of each
child with complex medical conditions assigned
to the health home to develop and incorporate
ongoing home care, community based pediatric
primary care, care from the most medically
appropriate or family-preferred children's
hospital, social support services, and local
hospital pediatric emergency 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 technology
to link services, as feasible and appropriate;
``(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 development,
operation, and evaluation of the health home's
services, the families of children with complex
medical conditions;
``(ix) ensuring that any interactions with
each child with complex medical conditions 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 intensive
diagnostic, treatment, and critical care levels
as medically necessary and appropriate out-of-
State care.
``(5) Designated provider.--The term `designated provider'
means a physician (including a pediatrician 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 entity or provider that is
determined by the State and approved by the Administrator of
the Centers for 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 infrastructure 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 professionals.--
``(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
professionals, such as pediatricians or
pediatric specialty or subspecialty providers,
nurse care coordinators, dietitians,
nutritionists, social workers, behavioral
health professionals, physical therapists,
occupational therapists, speech pathologists,
nurses, individuals with experience in medical
supportive technologies, or any professionals
determined to be appropriate by the State and
approved by the Administrator 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 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 Administrator of the
Centers for Medicare & Medicaid Services.
``(B) Inclusion.--Such term includes--
``(i) an entity or individual who is
designated to coordinate such team; and
``(ii) community health workers,
translators, and other individuals with
culturally-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).
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 emergency 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), including efforts to streamline such
processes or reduce the burden of such processes on providers.
(b) Stakeholder Input.--In carrying out subsection (a), the
Administrator of the Centers for Medicare & Medicaid Services shall
issue a request for information to seek input from children with
medically complex conditions (as defined in section 1947 of the Social
Security 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 effect 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, including 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 complex
conditions that--
(1) describes options for defining the characteristics of
such children;
(2) includes the information described in subsection (b);
and
(3) includes such recommendations as the Commission
determines is appropriate.
(b) Information To Be Included.--The information described in this
subsection is, to the extent practical and available, the following
information:
(1) With respect to the characteristics of children 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,
including primary language, based on available
data; and
(B) information gathered from consultation with
medical and academic experts engaged in research about,
or the treatment of, such children.
(2) Information relating to children with medically complex
conditions who are receiving medical 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, primary care case managers, or
managed care plans; and
(D) the extent to which such children receive care
coordination services.
(3) Information on the providers who furnish health care
items and services to children with medically complex
conditions, such as physicians (including pediatricians and
pediatric specialty or subspecialty 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 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 fashion,
including any variation in access to such services furnished by
such providers, disaggregated by delivery system.
(5) The amount and nature of the total resources 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 providing 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 waiver of such plan) or any
necessary approval under the State plan for the
furnishing of such services (such as inpatient costs
awaiting discharge);
(C) the cost of the coordination of such child's
care;
(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.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
Subcommittee Consideration and Mark-up Session Held.
Forwarded by Subcommittee to Full Committee (Amended) by Voice Vote .
Committee Consideration and Mark-up Session Held.
Ordered to be Reported (Amended) by Voice Vote.
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