[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. 428 Introduced in Senate (IS)]
<DOC>
115th CONGRESS
1st Session
S. 428
To amend titles XIX and XXI of the Social Security Act to authorize
States to provide coordinated care to children with complex medical
conditions through enhanced pediatric health homes, and for other
purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
February 16, 2017
Mr. Grassley (for himself, Mr. Bennet, Mr. Portman, Ms. Harris, Mr.
Blunt, Mr. Nelson, Mr. Brown, Mr. Gardner, and Mrs. Murray) introduced
the following bill; which was read twice and referred to the Committee
on Finance
_______________________________________________________________________
A BILL
To amend titles XIX and XXI of the Social Security Act to authorize
States to provide coordinated care to children with complex medical
conditions through enhanced pediatric health homes, 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 of 2017'' or the ``ACE Kids Act of 2017''.
SEC. 2. STATE OPTION TO PROVIDE COORDINATED CARE TO CHILDREN WITH
COMPLEX MEDICAL CONDITIONS THROUGH ENHANCED PEDIATRIC
HEALTH HOMES.
(a) State Medicaid Plan Amendment.--Title XIX of the Social
Security Act (42 U.S.C. 1396 et seq.) is amended by inserting after
section 1946 the following new section:
``state option to provide coordinated care through enhanced pediatric
health homes for children with complex medical conditions
``Sec. 1947. (a) In General.--Notwithstanding section 1902(a)(1)
(relating to statewideness) and section 1902(a)(10)(B) (relating to
comparability), beginning January 1, 2018, a State, at its option as a
State plan amendment, may establish an EPHH program to provide medical
assistance under this title for EPHH services furnished to children
with complex medical conditions who are enrolled in an enhanced
pediatric health home (also referred to in this section as an EPHH)
under an EPHH program agreement.
``(b) Definitions.--In this section:
``(1) Child with complex medical conditions.--The term
`child with complex medical conditions' means an individual
who--
``(A) is enrolled in a State plan under this title
or title XXI or under a waiver of such plan;
``(B) is under 21 years of age; and
``(C) has a chronic medical condition or serious
injury that--
``(i) affects two or more body systems;
``(ii) affects cognitive or physical
functioning (such as reducing the ability to
perform the activities of daily living,
including the ability to engage in movement or
mobility, eat, drink, communicate, or breathe
independently); and
``(iii) either--
``(I) requires intensive healthcare
interventions (such as multiple
medications, therapies, or durable
medical equipment) and intensive care
coordination to optimize health and
avoid hospitalizations or emergency
department visits; or
``(II) meets the criteria for
medical complexity under existing risk
adjustment methodologies using a
recognized, publicly available
pediatric grouping system (such as the
pediatric complex conditions
classification system or the Pediatric
Medical Complexity Algorithm) selected
by the Secretary in close collaboration
with the State agencies responsible for
administering State plans under this
title and a national panel of
pediatric, pediatric specialty, and
pediatric subspecialty experts.
``(2) Enhanced pediatric health home (ephh); ephh services;
ephh program agreement.--
``(A) In general.--The terms `enhanced pediatric
health home' and `EPHH' mean a provider-sponsored
entity qualified to care for children with medically
complex conditions that--
``(i) satisfies the requirements of
subparagraph (B);
``(ii) has entered into an EPHH program
agreement (as defined in subparagraph (D)) with
a State; and
``(iii) provides or arranges for the
provision of EPHH services (as defined in
subparagraph (C)) to children with complex
medical conditions.
``(B) Requirements.--The requirements of this
subparagraph are that the entity demonstrates to the
State with which the entity desires to enter into an
EPHH program agreement that it--
``(i) has expertise in providing,
integrating, or coordinating prompt care for
children with complex medical conditions,
including access to pediatric emergency
services at all times;
``(ii) shall design an individualized
comprehensive pediatric family-centered care
plan for each child with complex medical
conditions assigned to the entity, and provide
seamless pediatric care coordination by a
customized care team with a designated team
lead for each such child and the child's
family;
``(iii) shall work with the family of each
child with complex medical conditions assigned
to the entity 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 consistent with family choice
and the needs of the child;
``(iv) shall include the families of
children with complex medical conditions in the
delivery of care and the development,
operation, and evaluation of its services;
``(v) shall interact with children with
complex medical conditions and their families
in a culturally and linguistically appropriate
manner;
``(vi) shall provide integration and access
to sub-specialized pediatric services and
programs for children with complex medical
conditions, including the most intensive
diagnostic, treatment, and critical care levels
as medically necessary, including appropriate
out-of-State care;
``(vii) can 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;
``(viii) can coordinate the provision of
outpatient care needs, including durable
medical equipment, medical supplies, and
medical foods, if needed;
``(ix) can 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 provided under subsection
(d)(1);
``(x) can coordinate and collect payments
by liable third parties (including parties
described in section 1902(a)(25)(A)) for care
and services provided or arranged for by the
entity; and
``(xi) can collect and report on pediatric
quality measures appropriate for children with
medically complex conditions as described in
subsection (f)(1).
``(C) EPHH services.--
``(i) In general.--The term `EPHH services'
means timely, high-quality pediatric services
that are provided to children with complex
medical conditions by an enhanced pediatric
health home under an EPHH program agreement,
including all services for which medical
assistance is available under the State plan
under this title of the State that is a party
to the agreement (or an amendment to such plan)
and the services described in clause (ii).
``(ii) Services described.--The services
described in this subparagraph are the
following:
``(I) Comprehensive pediatric care
management, including inpatient and
outpatient hospital services, oral
health, behavioral health, and, where
necessary, hospice care or other long-
term services and supports as defined
by the State.
``(II) Care coordination and health
promotion.
``(III) Comprehensive transitional
care, including appropriate follow-up,
from inpatient to other settings.
``(IV) Patient and family support
(including authorized representatives).
``(V) Referral to community and
social support services, if relevant.
``(VI) Use of health information
technology to link services, as
feasible and appropriate.
``(VII) Coordinating access to the
full range of pediatric specialty and
subspecialty medical services,
including services from out-of-State
providers, as medically necessary.
``(D) EPHH program agreement.--The term `EPHH
program agreement' means an agreement between a State
and an EPHH that--
``(i) requires the EPHH to provide, or
arrange for or coordinate the provision of, at
a minimum, the services described in clause
(ii) of subparagraph (C);
``(ii) requires the EPHH to carry out the
requirements described in subparagraph (B) and
comply with the data collection requirements of
subsection (f);
``(iii) provides that the State, with
respect to children with complex medical
conditions who are residents of the State and
are assigned to the EPHH, shall establish
policies and procedures for making payments to
the EPHH for providing, arranging for, or
coordinating EPHH services furnished to such
children in another State;
``(iv) is subject to all relevant
requirements imposed by Federal, State, and
local law; and
``(v) contains such additional terms and
conditions, not inconsistent with this section,
as the parties may agree to.
``(3) State administering agency.--The term `State
administering agency' means the State agency (which shall be
the State agency responsible for administering the State plan
under this title or the State agency responsible for
administering the State program under title V) responsible for
administering EPHH program agreements under this section.
``(c) Family Preference for an Enhanced Pediatric Health Home.--
``(1) In general.--
``(A) Option to request enrollment.--Each child
with complex medical conditions who is eligible to
receive EPHH services under a State plan amendment
under this section shall have the option of requesting
to be enrolled with an EPHH of the child's choice in
accordance with a process established by the State.
``(B) Enrollment requirement.--An EPHH shall enroll
any child with complex medical conditions who requests
enrollment with the EPHH under subparagraph (A) unless
the terms of the EPHH program agreement between the
EPHH and the State allow the EPHH to decline the
child's request on the basis of pre-established
criteria specified in the agreement.
``(2) Outreach and education.--Each State with a State plan
amendment under this section shall conduct outreach and
education activities to raise awareness among children with
complex medical conditions and their families of the option to
enroll in an EPHH and may provide assistance to such children
and their families in making decisions with respect to such
enrollment. The activities and assistance described in this
paragraph may include activities and assistance carried out
by--
``(A) family-to-family information centers under
section 501(c);
``(B) family navigators;
``(C) nonprofit organizations; and
``(D) faith-based organizations.
``(3) Option to withdraw from program.--
``(A) In general.--Any child with complex medical
conditions that opts into an enhanced pediatric health
home under this subsection shall have the option to
disenroll from the home and to receive covered services
under the State plan under this title or the State
child health plan under title XXI.
``(B) Effective date of disenrollment.--The
disenrollment of a child with complex medical
conditions from an enhanced pediatric health home shall
take effect not later than 30 days after the child
notifies the health home of the child's desire to
disenroll.
``(4) Transition assistance.--In the case of an individual
who is enrolled in an enhanced pediatric health home under this
section and whose enrollment ceases for any reason (including
that the individual no longer qualifies as a child with complex
medical conditions, the termination of an EPHH program
agreement, or otherwise), the enhanced pediatric health home
shall continue to provide EPHH services to the individual
during a transition period to ensure that the individual's care
is not compromised, help the individual and the individual's
family self-manage the individual's medical conditions to the
maximum extent practicable, and provide assistance to the
individual and the individual's family in obtaining necessary
transitional care through appropriate referrals and making the
individual's medical records available to new providers.
``(d) Coordinating Care From Out-of-State Providers.--
``(1) Guidance.--
``(A) In general.--Not later than 2 years after the
date of the enactment of this section, the Secretary
shall issue guidance to State Medicaid Directors on
best practices for ensuring that children with complex
medical conditions receive prompt care from out-of-
State providers when medically necessary, including
guidance regarding--
``(i) arranging access to, and providing
payment for, care for such children provided by
out-of-State providers;
``(ii) reducing barriers for such children
receiving care from such providers in a timely
fashion;
``(iii) screening and enrolling out-of-
State providers, including efforts to
streamline the process or reduce the burden on
out-of-State providers that do not regularly
treat children from the State or that only
treat a small number of children from the State
(which may include providing for payment to
such a provider without requiring the provider
to enroll in the State plan);
``(iv) providing for payment to out-of-
State providers that provide care for children
with complex medical conditions in emergency
and non-emergency situations; and
``(v) how the guidance provided under this
subparagraph interacts with the requirements of
section 431.52 of title 42, Code of Federal
Regulations.
``(B) Stakeholder input.--In carrying out
subparagraph (A), the Secretary shall issue a Request
For Information to seek input from States, patient or
family advocates and organizations that represent
patients or families, children's health groups,
providers (including children's hospitals, hospitals,
pediatricians, and other pediatric providers), managed
care plans, and other relevant stakeholders.
``(2) Out-of-state policies for ephhs.--A State electing to
provide medical assistance pursuant to subsection (a) shall
provide information, consistent with guidance from the
Secretary, to enhanced pediatric health homes receiving payment
under this section, regarding the State's policies and
procedures for accessing care for children with complex medical
conditions from out-of-State providers. For the purpose of
helping facilitate medically necessary care for such children,
such information shall include information on how out-of-State
providers who provide services to such children can receive
payment by such State Medicaid program.
``(3) Best practices.--A State electing to provide medical
assistance pursuant to subsection (a) shall consider adopting
best practices for providing access to out-of-State providers
for children with complex medical conditions consistent with
guidance provided by the Secretary under paragraph (1).
``(e) Payments to Enhanced Pediatric Health Homes.--
``(1) In general.--A State shall provide an EPHH with
payments for the provision of EPHH services to each child
enrolled with an EPHH that has an EPHH program agreement with
the State. Such payments for such services shall be treated in
the same manner as payments under section 1945(c)(1), and, with
respect to payments for services described in section
1945(h)(4)(B) provided by an EPHH to children with complex
medical conditions enrolled with the EPHH during the first 8
fiscal quarters in which the EPHH program agreement is in
effect, the Federal medical assistance percentage applicable to
such payments shall be equal to the Federal medical assistance
percentage specified in section 1945(c)(1).
``(2) Alternative payment model methodology.--Payment to
enhanced pediatric health homes for EPHH services furnished
pursuant to a EPHH program agreement shall be made in a manner
to be determined by the State using an agreed-upon alternative
payment methodology developed under paragraph (4).
``(3) CMS guidance on alternative payment model
methodologies.--
``(A) In general.--Not later than January 1, 2018,
the Secretary shall publish guidance describing best
practices for States to employ in designing and
establishing alternative payment model methodologies
which may be used by enhanced pediatric health homes
with EPHH program agreements in developing equitable,
alternative payment model methodologies for EPHH
programs under paragraph (4). The guidance shall
include descriptions of best practices related to
designing shared savings and performance-based payment
models that are risk-adjusted for the population
enrolled in EPHH programs, and may include guidance
related to other alternative payment models, including
global payments and bundled payments.
``(B) Stakeholder input.--In carrying out
subparagraph (A), the Secretary shall issue a Request
for Information to seek input from States, the Medicaid
and CHIP Payment and Access Commission, providers
(including children's hospitals, hospitals,
pediatricians, and other pediatric providers), managed
care plans, children's health groups, family and
beneficiary advocates, the pediatric health care
community, and other relevant stakeholders.
``(C) Data analysis.--Beginning in the first year
of the implementation of enhanced pediatric health
homes, the Secretary shall analyze, for purposes of
developing the guidance required under this paragraph--
``(i) data collected under subsection
(f)(1); and
``(ii) other data as the Secretary
determines appropriate.
``(4) Development of alternative payment model
methodology.--
``(A) In general.--Each State, in collaboration
with any enhanced pediatric health home that is
operating an EPHH program under this section in the
State, shall develop the payment methodology or
methodologies for payment under the State plan in
accordance with this subsection that--
``(i) includes--
``(I) a risk adjustment method, re-
insurance system, or risk-corridor
procedure to account for variations in
acuity of the children with complex
medical conditions enrolled in enhanced
pediatric health homes; and
``(II) an alternative payment
model, which may include a shared
savings approach or performance-based
approach, such as a bundled payment or
risk-reward payment model;
``(ii) may be informed by guidance
published by the Secretary under paragraph
(3)(A); and
``(iii) considers data analyzed under
paragraph (3)(C), to the maximum extent
practicable.
``(B) Approval by state medicaid agency required.--
No payment may be made under a payment methodology
developed under this paragraph unless--
``(i) the relevant State agency responsible
for administering the State plan under this
title has approved such methodology; and
``(ii) the methodology is described in a
State plan amendment that has received approval
from the Secretary.
``(f) Data and Quality Assurance.--
``(1) Data.--The data collection requirements under this
paragraph, with respect to an enhanced pediatric health home,
are as follows:
``(A) The home, in collaboration with the State and
the child's health plan if appropriate, shall collect
and submit claims data on claims submitted with respect
to children who are furnished EPHH services. After
approval by the State, such data shall be reported in a
standardized format in a timely manner and made
available to the public for the purposes of
establishing a national database on such claims.
``(B) The State shall submit to the Secretary such
reports as the Secretary finds necessary to monitor the
operation, cost, and effectiveness of the EPHH services
furnished by the home.
``(2) Development of standards and measures.--The Secretary
shall, in consultation with States and enhanced pediatric
health homes with EPHH program agreements under this section
and national pediatric policy organizations--
``(A) establish a national set of quality assurance
and improvement protocols and procedures to apply under
EPHH programs established under this section;
``(B) develop pediatric quality measures that are
tailored to the care and treatment of children with
complex medical conditions and account for the health
and well-being, care coordination, child and family
experience, and access to and cost of care for children
with complex medical conditions;
``(C) develop provider accessibility standards for
access by children with complex medical conditions to
EPHH services; and
``(D) develop criteria for national pediatric-
focused care coordination for children with complex
medical conditions.
``(3) Use of existing quality measures.--In carrying out
paragraph (2), the Secretary shall consider incorporating, to
the extent applicable, the following measures:
``(A) Child health quality measures and measures
for centers of excellence for children with complex
needs developed under this title, title XXI, and
section 1139A.
``(B) The Healthcare Effectiveness Data and
Information Set (HEDIS).
``(C) Other existing quality measures, as
considered appropriate by the Secretary.
``(4) National pediatric policy organizations.--For
purposes of paragraph (2), the national pediatric policy
organizations that the Secretary shall consult with shall
include the following:
``(A) Acute care children's hospitals.
``(B) Specialty pediatric hospitals.
``(C) Subacute, rehabilitative, and long-term care
pediatric hospitals.
``(D) Pediatric providers, including primary care
providers, specialists, and subspecialists.
``(E) Pediatric home, community, and family care
organizations, including organizations representing
families or children with special needs.
``(F) National pediatric policy organizations with
specific expertise relating to children with complex
medical conditions.
``(G) Such other entities as the Secretary shall
determine appropriate.
``(5) Standard medicaid data set.--
``(A) In general.--The Secretary, the States, and
the enhanced pediatric health homes with EPHH program
agreements under this section shall collaborate to
obtain consistent and verifiable Medicaid Analytic
Extract data or a comparable data set and shall
establish data-sharing agreements to further support
collaborative planning and care coordination for
children with complex medical conditions.
``(B) Claims analysis.--
``(i) Analysis by independent third
party.--The Secretary shall commission an
independent third party to perform claims
analysis on the data set developed under
subparagraph (A) to determine the utilization
of items and services furnished under EPHH
programs to children with complex medical
conditions, and the overall effectiveness of
EPHH programs.
``(ii) Report.--For purposes of building a
national database, the Secretary shall submit
to Congress, and make publicly available on the
Internet site of the Centers for Medicare &
Medicaid Services, a report on the analysis
carried out under clause (i).''.
(b) Application Under CHIP.--Section 2107(e)(1) of the Social
Security Act (42 U.S.C. 1397gg(e)(1)) is amended by adding at the end
the following new subparagraph:
``(P) Section 1947 (relating to the Medicaid EPHH
program for children with complex medical
conditions).''.
SEC. 3. 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 a report to Congress and the Secretary of
Health and Human Services on children with complex medical conditions
which includes the information described in subsection (b) and such
recommendations as the Commission deems appropriate.
(b) Information To Be Included.--The information described in this
subsection is the following information:
(1) The characteristics of children with complex medical
conditions, including--
(A) a literature review examining--
(i) research on such children; and
(ii) clinical measures or other groupings
which enable comparison among such children;
and
(B) information gathered from consultation with
medical and academic experts engaged in research about
or treatment of such children.
(2) Children with complex medical conditions who are
enrolled in 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, serious injuries, life-
threatening illnesses, or rare diseases that such
children have;
(C) the number of such children receiving services
under each delivery system or payment model and the
type of payment model being used; and
(D) the extent to which such children receive care
coordination services.
(3) The pediatric providers who serve children with complex
medical conditions.
(4) The extent to which children with complex medical
conditions receive or are denied 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 in a timely
fashion, including any variation in access to such services by
delivery system.
SEC. 4. REPORT TO CONGRESS.
Not later than 5 years after the date of the enactment of this Act,
the Secretary of Health and Human Services shall submit Congress, and
make publicly available on the Internet site of the Centers for
Medicare & Medicaid Services, a report evaluating and assessing the
enhanced pediatric health home program established under section 1947
of the Social Security Act (as added by section 2), for the purposes of
determining--
(1) how the program might be improved; and
(2) whether the program should be expanded to include
pediatric populations that are not children with complex
medical conditions (as such term is defined for purposes of the
program) but who would still benefit from the type of care
coordination provided by an enhanced pediatric health home.
<all>