,,ii #aafth ,,congress #ast ,session ,s4 #cag ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,february #d1 #bjai ,mr4 ,grassley 7for himself and ,mr4 ,bennet7 introduced the following bill2 which was read twice and referred to the ,committee on ,finance ,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 home4 #a4 ,short title ,this ,act may be cited as the ,advancing ,care for ,exceptional ,kids ,act of #bjai or the ,,ace ,kids ,act of #bjai4 #b4 ,state option to provide coordinated care through a health home for children with medically complex conditions ,title ,,xix of the ,social ,security ,act 7#db ,u4,s4,c4 #acif et seq47 is amended by inserting after section #aide the following new section3 #aide;,a4 ,state option to provide coordinated care through a health home for children with medically complex conditions 7a7 ,in general ,notwithstanding section #aijb7;a77#a7 7relating to statewideness7 and section #aijb7;a77#aj77;,b7 7relating to comparability71 beginning ,october #a1 #bjbb1 a ,state1 at its option as a ,state plan amendment1 may provide for medical assistance under this title to children with medically complex conditions who choose to enroll in a health home under this section by selecting a designated provider1 a team of health care professionals operating with such a provider1 or a health team as the child's health home for purposes of providing the child with health home services4 7b7 ,health home qualification standards ,the ,secretary shall establish standards for qualification as a health home for purposes of this section4 ,such standards shall include requiring designated providers1 teams of health care professionals operating with such providers1 and health teams to demonstrate to the ,state the ability to do the following3 7#a7 ,coordinate prompt care for children with medically complex conditions1 including access to pediatric emergency services at all times4 7#b7 ,develop an individualized comprehensive pediatric family-centered care plan for children with medically complex conditions that accommodates patient preferences4 7#c7 ,work in a culturally and linguistically appropriate manner with the family of a child with medically complex conditions to develop and incorporate into such child's care plan1 in a manner consistent with the needs of the child and the choices of the child's family1 ongoing home care1 community-based pediatric primary care1 pediatric inpatient care1 social support services1 and local hospital pediatric emergency care4 7#d7 ,coordinate access to-- 7,a7 subspecialized pediatric services and programs for children with medically complex conditions1 including the most intensive diagnostic1 treatment1 and critical care levels as medically necessary2 and 7,b7 palliative services if the ,state provides such services under the ,state plan 7or a waiver of such plan74 7#e7 ,coordinate care for children with medically complex conditions with out-of-,state providers furnishing care to such children to the maximum extent practicable for the families of such children and where medically necessary1 in accordance with guidance issued under subsection 7e77#a7 and section #dca4eb of title #db1 ,code of ,federal ,regulations4 7#f7 ,collect and report information under subsection 7g77#a74 7c7 ,payments 7#a7 ,in general ,a ,state shall provide a designated provider1 a team of health care professionals operating with such a provider1 or a health team with payments for the provision of health home services to each child with medically complex conditions that selects such provider1 team of health care professionals1 or health team as the child's health home4 ,payments made to a designated provider1 a team of health care professionals operating with such a provider1 or a health team for such services shall be treated as medical assistance for purposes of section #aijc7;a71 except that1 during the first #b fiscal year quarters that the ,state plan amendment is in effect1 the ,federal medical assistance percentage applicable to such payments shall be increased by #ae percentage points1 but in no case may exceed #ij percent4 7#b7 ,methodology 7,a7 ,in general ,the ,state shall specify in the ,state plan amendment the methodology the ,state will use for determining payment for the provision of health home services4 ,such methodology for determining payment-- 7i7 may be tiered to reflect1 with respect to each child with medically complex conditions provided such services by a designated provider1 a team of health care professionals operating with such a provider1 or a health team1 the severity or number of each such child's chronic conditions1 life-threatening illnesses1 disabilities1 or rare diseases1 or the specific capabilities of the provider1 team of health care professionals1 or health team2 and 7ii7 shall be established consistent with section #aijb7;a77#cj77;,a74 7,b7 ,alternate models of payment ,the methodology for determining payment for provision of health home services under this section shall not be limited to a per-member per-month basis and may provide 7as proposed by the ,state and subject to approval by the ,secretary7 for alternate models of payment4 7#c7 ,planning grants 7,a7 ,in general ,beginning ,october #a1 #bjbb1 the ,secretary may award planning grants to ,states for purposes of developing a ,state plan amendment under this section4 ,a planning grant awarded to a ,state under this paragraph shall remain available until expended4 7,b7 ,state contribution ,a ,state awarded a planning grant shall contribute an amount equal to the ,state percentage determined under section #aije7;b7 7without regard to section #ejja of ,public ,law #aaa-e7 for each fiscal year for which the grant is awarded4 7,c7 ,limitation ,the total amount of payments made to ,states under this paragraph shall not exceed #e1jjj1jjj4 7d7 ,coordinating care 7#a7 ,hospital notification ,a ,state with a ,state plan amendment approved under this section shall require each hospital that is a participating provider under the ,state plan 7or a waiver of such plan7 to establish procedures for1 in the case of a child with medically complex conditions who is enrolled in a health home pursuant to this section and seeks treatment in the emergency department of such hospital1 notifying the health home of such child of such treatment4 7#b7 ,education with respect to availability of health home services ,in order for a ,state plan amendment to be approved under this section1 a ,state shall include in the ,state plan amendment a description of the ,state's process for educating providers participating in the ,state plan 7or a waiver of such plan7 on the availability of health home services for children with medically complex conditions1 including the process by which such providers can refer such children to a designated provider1 team of health care professionals operating such a provider1 or health team for the purpose of establishing a health home through which such children may receive such services4 7#c7 ,family education ,in order for a ,state plan amendment to be approved under this section1 a ,state shall include in the ,state plan amendment 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 services4 ,such process shall include the participation of family-to-family entities or other public or private organizations or entities who provide outreach and information on the availability of health care items and services to families of individuals eligible to receive medical assistance under the ,state plan 7or a waiver of such plan74 7#d7 ,mental health coordination ,a ,state with a ,state plan amendment approved under this section shall consult and coordinate1 as appropriate1 with the ,secretary in addressing issues regarding the prevention and treatment of mental illness and substance use among children with medically complex conditions receiving health home services under this section4 7e7 ,guidance on coordinating care from out-of-,state providers 7#a7 ,in general ,not later than ,october #a1 #bjbj1 the ,secretary shall issue 7and update as the ,secretary determines necessary7 guidance to ,state ,medicaid directors on-- 7,a7 best practices for using out-of-,state providers to provide care to children with medically complex conditions2 7,b7 coordinating care for such children provided by such out-of-,state providers 7including when provided in emergency and non-emergency situations72 7,c7 reducing barriers for such children receiving care from such providers in a timely fashion2 and 7,d7 processes for screening and enrolling such providers in the respective ,state plan 7or a waiver of such plan71 including efforts to streamline such processes or reduce the burden of such processes on such providers4 7#b7 ,stakeholder input ,in carrying out paragraph 7#a71 the ,secretary shall issue a request for information to seek input from children with medically complex conditions and their families1 ,states1 providers 7including children's hospitals1 hospitals1 pediatricians1 and other providers71 managed care plans1 children's health groups1 family and beneficiary advocates1 and other stakeholders with respect to coordinating the care for such children provided by out-of-,state providers4 7f7 ,monitoring ,a ,state shall include in the ,state plan amendment-- 7#a7 a methodology for tracking reductions in inpatient days and reductions in the total cost of care resulting from improved care coordination and management under this section2 7#b7 a proposal for use of health information technology in providing health home services under this section and improving service delivery and coordination across the care continuum 7including the use of wireless patient technology to improve coordination and management of care and patient adherence to recommendations made by their provider72 and 7#c7 a methodology for tracking prompt and timely access to medically necessary care for children with medically complex conditions from out-of-,state providers4 7g7 ,data collection 7#a7 ,provider reporting requirements ,in order to receive payments from a ,state under subsection 7c71 a designated provider1 a team of health care professionals operating with such a provider1 or a health team shall report to the ,state1 at such time and in such form and manner as may be required by the ,state1 the following information3 7,a7 ,with respect to each such provider1 team of health care professionals1 or health team1 the name1 ,national ,provider ,identification number1 address1 and specific health care services offered to be provided to children with medically complex conditions who have selected such provider1 team of health care professionals1 or health team as the health home of such children4 7,b7 ,information on all applicable measures for determining the quality of health home services provided by such provider1 team of health care professionals1 or health team1 including1 to the extent applicable1 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,c7 ,such other information as the ,secretary shall specify in guidance4 ,when appropriate and feasible1 such provider1 team of health care professionals1 or health team1 as the case may be1 shall use health information technology in providing the ,state with such information4 7#b7 ,state reporting requirements 7,a7 ,comprehensive report ,a ,state with a ,state plan amendment approved under this section shall report to the ,secretary 7and1 upon request1 to the ,medicaid and ,,chip ,payment and ,access ,commission71 at such time and in such form and manner determined by the ,secretary to be reasonable and minimally burdensome1 the following information3 7i7 ,information reported under paragraph 7#a74 7ii7 ,the number of children with medically complex conditions who have selected a health home pursuant to this section4 7iii7 ,the nature1 number1 and prevalence of chronic conditions1 life-threatening illnesses1 disabilities1 or rare diseases that such children have4 7iv7 ,the type of delivery systems and payment models used to provide services to such children under this section4 7v7 ,the number and characteristics of designated providers1 teams of health care professionals operating with such providers1 and health teams selected as health homes pursuant to this section1 including the number and characteristics of out-of-,state providers1 teams of health care professionals operating with such providers1 and health teams who have provided health care items and services to such children4 7vi7 ,the extent to which such children receive health care items and services under the ,state plan4 7vii7 ,quality measures developed specifically with respect to health care items and services provided to children with medically complex conditions4 7,b7 ,report on best practices ,not later than #ij days after a ,state has a ,state plan amendment approved under this section1 such ,state shall submit to the ,secretary1 and make publicly available on the appropriate ,state website1 a report on how the ,state is implementing guidance issued under subsection 7e77#a71 including through any best practices adopted by the ,state4 7h7 ,rule of construction ,nothing in this section may be construed-- 7#a7 to require a child with medically complex conditions to enroll in a health home under this section2 7#b7 to limit the choice of a child with medically complex conditions in selecting a designated provider1 team of health care professionals operating with such a provider1 or health team that meets the health home qualification standards established under subsection 7b7 as the child's health home2 or 7#c7 to reduce or otherwise modify-- 7,a7 the entitlement of children with medically complex conditions to early and periodic screening1 diagnostic1 and treatment services 7as defined in section #aije7r772 or 7,b7 the informing1 providing1 arranging1 and reporting requirements of a ,state under section #aijb7;a77#dc74 7i7 ,definitions ,in this section3 7#a7 ,child with medically complex conditions 7,a7 ,in general ,subject to subparagraph 7,b71 the term child with medically complex conditions means an individual under #ba years of age who-- 7i7 is eligible for medical assistance under the ,state plan 7or under a waiver of such plan72 and 7ii7 has at least-- 7,i7 one or more chronic conditions that cumulatively affect three or more organ systems and severely reduces cognitive or physical functioning 7such as the ability to eat1 drink1 or breathe independently7 and that also requires the use of medication1 durable medical equipment1 therapy1 surgery1 or other treatments2 or 7,,ii7 one life-limiting illness or rare pediatric disease 7as defined in section #ebi7;a77#c7 of the ,federal ,food1 ,drug1 and ,cosmetic ,act 7#ba ,u4,s4,c4 #cfj;ff7a77#c7774 7,b7 ,rule of construction ,nothing in this paragraph shall prevent the ,secretary from establishing higher levels as to the number or severity of chronic1 life threatening illnesses1 disabilities1 rare diseases or mental health conditions for purposes of determining eligibility for receipt of health home services under this section4 7#b7 ,chronic condition ,the term chronic condition means a serious1 long-term physical1 mental1 or developmental disability or disease4 7#c7 ,health home ,the term health home means a designated provider 7including a provider that operates in coordination with a team of health care professionals7 or a health team selected by a child with medically complex conditions 7or the family of such child7 to provide health home services4 7#d7 ,health home services 7,a7 ,in general ,the term health home services means comprehensive and timely high-quality services described in subparagraph 7,b7 that are provided by a designated provider1 a team of health care professionals operating with such a provider1 or a health team4 7,b7 ,services described ,the services described in this subparagraph shall include-- 7i7 comprehensive care management2 7ii7 care coordination1 health promotion1 and providing access to the full range of pediatric specialty and subspecialty medical services1 including services from out-of-,state providers1 as medically necessary2 7iii7 comprehensive transitional care1 including appropriate follow-up1 from inpatient to other settings2 7iv7 patient and family support 7including authorized representatives72 7v7 referrals to community and social support services1 if relevant2 and 7vi7 use of health information technology to link services1 as feasible and appropriate4 7#e7 ,designated provider ,the term designated provider means a physician 7including a pediatrician or a pediatric specialty or subspecialty provider71 children's hospital1 clinical practice or clinical group practice1 prepaid inpatient health plan or prepaid ambulatory health plan 7as defined by the ,secretary71 rural clinic1 community health center1 community mental health center1 home health agency1 or any other entity or provider that is determined by the ,state and approved by the ,secretary 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 systems1 expertise1 and infrastructure in place to provide health home services4 ,such term may include providers who are employed by1 or affiliated with1 a children's hospital4 7#f7 ,team of health care professionals ,the term team of health care professionals means a team of health care professionals 7as described in the ,state plan amendment under this section7 that may-- 7,a7 include-- 7i7 physicians and other professionals1 such as pediatricians or pediatric specialty or subspecialty providers1 nurse care coordinators1 dietitians1 nutritionists1 social workers1 behavioral health professionals1 physical therapists1 occupational therapists1 speech pathologists1 nurses1 individuals with experience in medical supportive technologies1 or any professionals determined to be appropriate by the ,state and approved by the ,secretary2 7ii7 an entity or individual who is designated to coordinate such a team2 and 7iii7 community health workers1 translators1 and other individuals with culturally-appropriate expertise2 and 7,b7 be freestanding1 virtual1 or based at a children's hospital1 hospital1 community health center1 community mental health center1 rural clinic1 clinical practice or clinical group practice1 academic health center1 or any entity determined to be appropriate by the ,state and approved by the ,secretary4 7#g7 ,health team ,the term health team has the meaning given such term for purposes of section #cejb of ,public ,law #aaa-adh4 4