[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>