Title: ACE Kids Act
Policy area: Health

Summary:
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>