,,ii #aaeth ,,congress #ast ,session ,s4 #dbh ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,february #af1 #bjag,mr4 ,grassley 7for himself1 ,mr4 ,bennet1 ,mr4 ,portman1 ,ms4 ,harris1 ,mr4 ,blunt1 ,mr4 ,nelson1 ,mr4 ,brown1 ,mr4 ,gardner1 and ,mrs4 ,murray7 introduced the following bill2 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 homes1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,advancing ,care for ,exceptional ,kids ,act of #bjag or the ,,ace ,kids ,act of #bjag4 #b4 ,state option to provide coordinated care to children with complex medical conditions through enhanced pediatric health homes 7a7 ,state ,medicaid plan amendment ,title ,,xix of the ,social ,security ,act 7#db ,u4,s4,c4 #acif et seq47 is amended by inserting after section #aidf the following new section3 #aidg4 ,state ,option to ,provide ,coordinated ,care ,through ,enhanced ,pediatric ,health ,homes for ,children with ,complex ,medical ,conditions 7a7 ,in general ,notwithstanding section #aijb7;a77#a7 7relating to statewideness7 and section #aijb7;a77#aj77;,b7 7relating to comparability71 beginning ,january #a1 #bjah1 a ,state1 at its option as a ,state plan amendment1 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 7also referred to in this section as an ,,ephh7 under an ,,ephh program agreement4 7b7 ,definitions ,in this section3 7#a7 ,child with complex medical conditions ,the term child with complex medical conditions means an individual who-- 7,a7 is enrolled in a ,state plan under this title or title ,,xxi or under a waiver of such plan2 7,b7 is under #ba years of age2 and 7,c7 has a chronic medical condition or serious injury that-- 7i7 affects two or more body systems2 7ii7 affects cognitive or physical functioning 7such as reducing the ability to perform the activities of daily living1 including the ability to engage in movement or mobility1 eat1 drink1 communicate1 or breathe independently72 and 7iii7 either-- 7,i7 requires intensive healthcare interventions 7such as multiple medications1 therapies1 or durable medical equipment7 and intensive care coordination to optimize health and avoid hospitalizations or emergency department visits2 or 7,,ii7 meets the criteria for medical complexity under existing risk adjustment methodologies using a recognized1 publicly available pediatric grouping system 7such as the pediatric complex conditions classification system or the ,pediatric ,medical ,complexity ,algorithm7 selected by the ,secretary in close collaboration with the ,state agencies responsible for administering ,state plans under this title and a national panel of pediatric1 pediatric specialty1 and pediatric subspecialty experts4 7#b7 ,enhanced pediatric health home 7,,ephh72 ,,ephh services2 ,,ephh program agreement 7,a7 ,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-- 7i7 satisfies the requirements of subparagraph 7,b72 7ii7 has entered into an ,,ephh program agreement 7as defined in subparagraph 7,d77 with a ,state2 and 7iii7 provides or arranges for the provision of ,,ephh services 7as defined in subparagraph 7,c77 to children with complex medical conditions4 7,b7 ,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-- 7i7 has expertise in providing1 integrating1 or coordinating prompt care for children with complex medical conditions1 including access to pediatric emergency services at all times2 7ii7 shall design an individualized comprehensive pediatric family-centered care plan for each child with complex medical conditions assigned to the entity1 and provide seamless pediatric care coordination by a customized care team with a designated team lead for each such child and the child's family2 7iii7 shall work with the family of each child with complex medical conditions assigned to the entity to develop and incorporate ongoing home care1 community-based pediatric primary care1 care from the most medically appropriate or family-preferred children's hospital1 social support services1 and local hospital pediatric emergency care into the child's care plan consistent with family choice and the needs of the child2 7iv7 shall include the families of children with complex medical conditions in the delivery of care and the development1 operation1 and evaluation of its services2 7v7 shall interact with children with complex medical conditions and their families in a culturally and linguistically appropriate manner2 7vi7 shall provide integration and access to sub-specialized pediatric services and programs for children with complex medical conditions1 including the most intensive diagnostic1 treatment1 and critical care levels as medically necessary1 including appropriate out-of-,state care2 7vii7 can coordinate and integrate the full range of pediatric medical1 surgical1 and behavioral specialists and subspecialists needed1 based on clinical qualifications 7such as board certification7 and patient preference1 on the care team to care for children with complex medical conditions1 as well as providers offering specialized services1 such as rehabilitative and habilitative health care and private-duty nursing1 if needed2 7viii7 can coordinate the provision of outpatient care needs1 including durable medical equipment1 medical supplies1 and medical foods1 if needed2 7ix7 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 7d77#a72 7x7 can coordinate and collect payments by liable third parties 7including parties described in section #aijb7;a77#be77;,a77 for care and services provided or arranged for by the entity2 and 7xi7 can collect and report on pediatric quality measures appropriate for children with medically complex conditions as described in subsection 7f77#a74 7,c7 ,,ephh services 7i7 ,in general ,the term ,,ephh services means timely1 high-quality pediatric services that are provided to children with complex medical conditions by an enhanced pediatric health home under an ,,ephh program agreement1 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 7or an amendment to such plan7 and the services described in clause 7ii74 7ii7 ,services described ,the services described in this subparagraph are the following3 7,i7 ,comprehensive pediatric care management1 including inpatient and outpatient hospital services1 oral health1 behavioral health1 and1 where necessary1 hospice care or other long-term services and supports as defined by the ,state4 7,,ii7 ,care coordination and health promotion4 7,,iii7 ,comprehensive transitional care1 including appropriate follow-up1 from inpatient to other settings4 7,,iv7 ,patient and family support 7including authorized representatives74 7,v7 ,referral to community and social support services1 if relevant4 7,,vi7 ,use of health information technology to link services1 as feasible and appropriate4 7,,vii7 ,coordinating access to the full range of pediatric specialty and subspecialty medical services1 including services from out-of-,state providers1 as medically necessary4 7,d7 ,,ephh program agreement ,the term ,,ephh program agreement means an agreement between a ,state and an ,,ephh that-- 7i7 requires the ,,ephh to provide1 or arrange for or coordinate the provision of1 at a minimum1 the services described in clause 7ii7 of subparagraph 7,c72 7ii7 requires the ,,ephh to carry out the requirements described in subparagraph 7,b7 and comply with the data collection requirements of subsection 7f72 7iii7 provides that the ,state1 with respect to children with complex medical conditions who are residents of the ,state and are assigned to the ,,ephh1 shall establish policies and procedures for making payments to the ,,ephh for providing1 arranging for1 or coordinating ,,ephh services furnished to such children in another ,state2 7iv7 is subject to all relevant requirements imposed by ,federal1 ,state1 and local law2 and 7v7 contains such additional terms and conditions1 not inconsistent with this section1 as the parties may agree to4 7#c7 ,state administering agency ,the term ,state administering agency means the ,state agency 7which 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 ,v7 responsible for administering ,,ephh program agreements under this section4 7c7 ,family preference for an enhanced pediatric health home 7#a7 ,in general 7,a7 ,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 ,state4 7,b7 ,enrollment requirement ,an ,,ephh shall enroll any child with complex medical conditions who requests enrollment with the ,,ephh under subparagraph 7,a7 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 agreement4 7#b7 ,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 enrollment4 ,the activities and assistance described in this paragraph may include activities and assistance carried out by-- 7,a7 family-to-family information centers under section #eja7;c72 7,b7 family navigators2 7,c7 nonprofit organizations2 and 7,d7 faith-based organizations4 7#c7 ,option to withdraw from program 7,a7 ,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 ,,xxi4 7,b7 ,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 #cj days after the child notifies the health home of the child's desire to disenroll4 7#d7 ,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 7including that the individual no longer qualifies as a child with complex medical conditions1 the termination of an ,,ephh program agreement1 or otherwise71 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 compromised1 help the individual and the individual's family self-manage the individual's medical conditions to the maximum extent practicable1 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 providers4 7d7 ,coordinating care from out-of-,state providers 7#a7 ,guidance 7,a7 ,in general ,not later than #b years after the date of the enactment of this section1 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 necessary1 including guidance regarding-- 7i7 arranging access to1 and providing payment for1 care for such children provided by out-of-,state providers2 7ii7 reducing barriers for such children receiving care from such providers in a timely fashion2 7iii7 screening and enrolling out-of-,state providers1 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 7which may include providing for payment to such a provider without requiring the provider to enroll in the ,state plan72 7iv7 providing for payment to out-of-,state providers that provide care for children with complex medical conditions in emergency and non-emergency situations2 and 7v7 how the guidance provided under this subparagraph interacts with the requirements of section #dca4eb of title #db1 ,code of ,federal ,regulations4 7,b7 ,stakeholder input ,in carrying out subparagraph 7,a71 the ,secretary shall issue a ,request ,for ,information to seek input from ,states1 patient or family advocates and organizations that represent patients or families1 children's health groups1 providers 7including children's hospitals1 hospitals1 pediatricians1 and other pediatric providers71 managed care plans1 and other relevant stakeholders4 7#b7 ,out-of-,state policies for ,e,p,h,hs ,a ,state electing to provide medical assistance pursuant to subsection 7a7 shall provide information1 consistent with guidance from the ,secretary1 to enhanced pediatric health homes receiving payment under this section1 regarding the ,state's policies and procedures for accessing care for children with complex medical conditions from out-of-,state providers4 ,for the purpose of helping facilitate medically necessary care for such children1 such information shall include information on how out-of-,state providers who provide services to such children can receive payment by such ,state ,medicaid program4 7#c7 ,best practices ,a ,state electing to provide medical assistance pursuant to subsection 7a7 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 7#a74 7e7 ,payments to enhanced pediatric health homes 7#a7 ,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 ,state4 ,such payments for such services shall be treated in the same manner as payments under section #aide7;c77#a71 and1 with respect to payments for services described in section #aide7;h77#d77;,b7 provided by an ,,ephh to children with complex medical conditions enrolled with the ,,ephh during the first #h fiscal quarters in which the ,,ephh program agreement is in effect1 the ,federal medical assistance percentage applicable to such payments shall be equal to the ,federal medical assistance percentage specified in section #aide7;c77#a74 7#b7 ,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 7#d74 7#c7 ,,cms guidance on alternative payment model methodologies 7,a7 ,in general ,not later than ,january #a1 #bjah1 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 equitable1 alternative payment model methodologies for ,,ephh programs under paragraph 7#d74 ,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 programs1 and may include guidance related to other alternative payment models1 including global payments and bundled payments4 7,b7 ,stakeholder input ,in carrying out subparagraph 7,a71 the ,secretary shall issue a ,request for ,information to seek input from ,states1 the ,medicaid and ,,chip ,payment and ,access ,commission1 providers 7including children's hospitals1 hospitals1 pediatricians1 and other pediatric providers71 managed care plans1 children's health groups1 family and beneficiary advocates1 the pediatric health care community1 and other relevant stakeholders4 7,c7 ,data analysis ,beginning in the first year of the implementation of enhanced pediatric health homes1 the ,secretary shall analyze1 for purposes of developing the guidance required under this paragraph-- 7i7 data collected under subsection 7f77#a72 and 7ii7 other data as the ,secretary determines appropriate4 7#d7 ,development of alternative payment model methodology 7,a7 ,in general ,each ,state1 in collaboration with any enhanced pediatric health home that is operating an ,,ephh program under this section in the ,state1 shall develop the payment methodology or methodologies for payment under the ,state plan in accordance with this subsection that-- 7i7 includes-- 7,i7 a risk adjustment method1 re-insurance system1 or risk-corridor procedure to account for variations in acuity of the children with complex medical conditions enrolled in enhanced pediatric health homes2 and 7,,ii7 an alternative payment model1 which may include a shared savings approach or performance-based approach1 such as a bundled payment or risk-reward payment model2 7ii7 may be informed by guidance published by the ,secretary under paragraph 7#c77;,a72 and 7iii7 considers data analyzed under paragraph 7#c77;,c71 to the maximum extent practicable4 7,b7 ,approval by ,state ,medicaid agency required ,no payment may be made under a payment methodology developed under this paragraph unless-- 7i7 the relevant ,state agency responsible for administering the ,state plan under this title has approved such methodology2 and 7ii7 the methodology is described in a ,state plan amendment that has received approval from the ,secretary4 7f7 ,data and quality assurance 7#a7 ,data ,the data collection requirements under this paragraph1 with respect to an enhanced pediatric health home1 are as follows3 7,a7 ,the home1 in collaboration with the ,state and the child's health plan if appropriate1 shall collect and submit claims data on claims submitted with respect to children who are furnished ,,ephh services4 ,after approval by the ,state1 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 claims4 7,b7 ,the ,state shall submit to the ,secretary such reports as the ,secretary finds necessary to monitor the operation1 cost1 and effectiveness of the ,,ephh services furnished by the home4 7#b7 ,development of standards and measures ,the ,secretary shall1 in consultation with ,states and enhanced pediatric health homes with ,,ephh program agreements under this section and national pediatric policy organizations-- 7,a7 establish a national set of quality assurance and improvement protocols and procedures to apply under ,,ephh programs established under this section2 7,b7 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-being1 care coordination1 child and family experience1 and access to and cost of care for children with complex medical conditions2 7,c7 develop provider accessibility standards for access by children with complex medical conditions to ,,ephh services2 and 7,d7 develop criteria for national pediatric-focused care coordination for children with complex medical conditions4 7#c7 ,use of existing quality measures ,in carrying out paragraph 7#b71 the ,secretary shall consider incorporating1 to the extent applicable1 the following measures3 7,a7 ,child health quality measures and measures for centers of excellence for children with complex needs developed under this title1 title ,,xxi1 and section #aaci;,a4 7,b7 ,the ,healthcare ,effectiveness ,data and ,information ,set 7,,hedis74 7,c7 ,other existing quality measures1 as considered appropriate by the ,secretary4 7#d7 ,national pediatric policy organizations ,for purposes of paragraph 7#b71 the national pediatric policy organizations that the ,secretary shall consult with shall include the following3 7,a7 ,acute care children's hospitals4 7,b7 ,specialty pediatric hospitals4 7,c7 ,subacute1 rehabilitative1 and long-term care pediatric hospitals4 7,d7 ,pediatric providers1 including primary care providers1 specialists1 and subspecialists4 7,e7 ,pediatric home1 community1 and family care organizations1 including organizations representing families or children with special needs4 7,f7 ,national pediatric policy organizations with specific expertise relating to children with complex medical conditions4 7,g7 ,such other entities as the ,secretary shall determine appropriate4 7#e7 ,standard ,medicaid data set 7,a7 ,in general ,the ,secretary1 the ,states1 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 conditions4 7,b7 ,claims analysis 7i7 ,analysis by independent third party ,the ,secretary shall commission an independent third party to perform claims analysis on the data set developed under subparagraph 7,a7 to determine the utilization of items and services furnished under ,,ephh programs to children with complex medical conditions1 and the overall effectiveness of ,,ephh programs4 7ii7 ,report ,for purposes of building a national database1 the ,secretary shall submit to ,congress1 and make publicly available on the ,internet site of the ,centers for ,medicare ,medicaid ,services1 a report on the analysis carried out under clause 7i74 4 7b7 ,application under ,,chip ,section #bajg7;e77#a7 of the ,social ,security ,act 7#db ,u4,s4,c4 #acig;gg7e77#a77 is amended by adding at the end the following new subparagraph3 7,p7 ,section #aidg 7relating to the ,medicaid ,,ephh program for children with complex medical conditions74 4 #c4 ,,macpac report 7a7 ,in general ,not later than #bd months after the date of the enactment of this ,act1 the ,medicaid and ,,chip ,payment and ,access ,commission established under section #aijj of the ,social ,security ,act 7#db ,u4,s4,c4 #acif7 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 7b7 and such recommendations as the ,commission deems appropriate4 7b7 ,information ,to be included ,the information described in this subsection is the following information3 7#a7 ,the characteristics of children with complex medical conditions1 including-- 7,a7 a literature review examining-- 7i7 research on such children2 and 7ii7 clinical measures or other groupings which enable comparison among such children2 and 7,b7 information gathered from consultation with medical and academic experts engaged in research about or treatment of such children4 7#b7 ,children with complex medical conditions who are enrolled in a ,state ,medicaid plan under title ,,xix of the ,social ,security ,act 7or a waiver of such plan71 including-- 7,a7 the number of such children2 7,b7 the chronic conditions1 serious injuries1 life-threatening illnesses1 or rare diseases that such children have2 7,c7 the number of such children receiving services under each delivery system or payment model and the type of payment model being used2 and 7,d7 the extent to which such children receive care coordination services4 7#c7 ,the pediatric providers who serve children with complex medical conditions4 7#d7 ,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 7or a waiver of such plan7 and any barriers to receiving such services in a timely fashion1 including any variation in access to such services by delivery system4 #d4 ,report to ,congress ,not later than #e years after the date of the enactment of this ,act1 the ,secretary of ,health and ,human ,services shall submit ,congress1 and make publicly available on the ,internet site of the ,centers for ,medicare ,medicaid ,services1 a report evaluating and assessing the enhanced pediatric health home program established under section #aidg of the ,social ,security ,act 7as added by section #b71 for the purposes of determining-- 7#a7 how the program might be improved2 and 7#b7 whether the program should be expanded to include pediatric populations that are not children with complex medical conditions 7as such term is defined for purposes of the program7 but who would still benefit from the type of care coordination provided by an enhanced pediatric health home4