,i #aafth ,,congress #b;d ,session ,h4 ,r4 #ijjb ,,in ,,the ,,house ,,of ,,representatives ,december #ag1 #bjbj ,ms4 ,de,gette 7for herself and ,mr4 ,mc,caul7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to amend title ,,xix of the ,social ,security ,act to provide ,states an option to cover a children's program of all-inclusive coordinated care 7,chi,p,a,c,c7 under ,medicaid program4 #a4 ,short title ,this ,act may be cited as the ,chi,p,a,c,c ,act of #bjbj4 #b4 ,findings ,congress finds that-- 7#a7 serious illnesses and health conditions that are potentially life-threatening place significant stress on both the child and family2 7#b7 palliative care relieves children's symptoms such as pain1 fatigue1 anxiety1 nausea1 and sleep problems1 and may be provided at any age or stage of serious illness1 and has been shown to enhance the quality of life for both the child and family2 7#c7 under the existing model under the ,medicaid program under title ,,xix of the ,social ,security ,act 7#db ,u4,s4,c4 #acif et seq471 eligible children diagnosed with potentially life-limiting illnesses are limited to receiving hospice services only after they have been given a prognosis of six months to live4 ,there remain many critical barriers to end-of-life care under the current health care system1 including reluctance of medical professionals and families to acknowledge a limited life expectancy2 7#d7 such model offers discrete services1 which can be difficult to navigate1 while the qualifications for coverage under the ,medicaid program can block access to critical care2 7#e7 the ,children's ,program of ,all-inclusive ,coordinated ,care 7referred to in this ,act as ,chi,p,a,c,c7 provides all-inclusive care for children with life-threatening conditions and their families from the time of diagnosis and-- 7,a7 fills a gap in coverage under the ,medicaid program of integrated1 multi-disciplinary services that are reasonable and necessary for the palliation and management of seriously ill children2 7,b7 serves a population that includes children who are not yet hospice eligible2 and 7,c7 provides greater coordination of palliative and curative services for children throughout the course of their illness or condition1 which may begin at the time of diagnosis2 7#f7 some ,states have opted to provide services targeted to this population through waivers under subsections 7b7 and 7c7 of section #aiae of the ,social ,security ,act 7#db ,u4,s4,c4 #acifn71 each of which requires the approval of the ,centers for ,medicare ,medicaid ,services of the initial waiver application and any subsequent renewal of such waiver2 7#g7 since #bjje1 the ,secretary of ,health and ,human ,services has approved home and community-based service waivers under section #aiae7;c7 of such ,act 7#db ,u4,s4,c4 #acifn7c77 to operate ,chi,p,a,c,c in five ,states2 7#h7 in ,states operating ,chi,p,a,c,c under such a waiver-- 7,a7 the respective ,state's ,medicaid program achieved significant cost savings through a reduction in inpatient care and an increase in less expensive outpatient care2 7,b7 access to such services in such ,states reduced more costly utilizations of other services2 and 7,c7 services provided through ,chi,p,a,c,c are less costly to the ,state's ,medicaid program because ,chi,p,a,c,c facilitates children receiving palliative care at home rather than receiving such services in an inpatient hospital setting2 and 7#i7 allowing ,states the option to implement ,chi,p,a,c,c through a ,state plan amendment would-- 7,a7 give ,states the ability to make such program a part of a ,state's ,medicaid program while avoiding the lengthy waiver process2 and 7,b7 give ,states the flexibility to establish and design its program to fit the needs of the respective ,state4 #c4 ,optional ,medicaid coverage of children's program of all-inclusive coordinated care 7a7 ,children's program of all-,inclusive coordinated care ,title ,,xix of the ,social ,security ,act is amended by inserting after section #aidf 7#db ,u4,s4,c4 #acifw-#e7 the following new section3 #aidg4 ,children's program of all-inclusive coordinated care 7a7 ,state option 7#a7 ,in general ,beginning on ,january #a1 #bjba1 a ,state1 at its option as a ,state plan amendment1 may elect to provide for medical assistance under this title to ,chi,p,a,c,c-eligible individuals who choose to enroll in a children's program of all-inclusive coordinated care4 ,in the case of an individual who chooses to enroll in such a program pursuant to such an election-- 7,a7 the individual shall receive ,chi,p,a,c,c benefits in addition to other services under the ,state plan2 and 7,b7 the health care providers furnishing services under such program shall receive payment for providing such services in accordance with the terms of the ,state plan4 7#b7 ,numerical and geographical limitations permitted ,a ,state may establish-- 7,a7 a numerical limit on the number of individuals who may be enrolled in the ,state's ,chi,p,a,c,c2 or 7,b7 geographic limitations on the service areas for a ,chi,p,a,c,c4 7#c7 ,process for determining eligible individuals ,if a ,state elects to establish a limitation under paragraph 7#b71 the ,state shall establish a process for determining criteria for which individuals who may be enrolled in the ,state's ,chi,p,a,c,c4 7b7 ,chi,p,a,c,c and other terms defined ,in this section3 7#a7 ,children's program of all-inclusive coordinated care2 chipacc ,the terms children's program of all-inclusive coordinated care and ,chi,p,a,c,c mean a program of coordinated care for ,chi,p,a,c,c-eligible children that is established by a ,state under this section and meets the following requirements3 7,a7 ,operation ,the ,state administering agency may provide for the operation of the program through arrangements between one or more other entities that will serve as ,chi,p,a,c,c coordinators 7as defined in paragraph 7#c774 7,b7 ,comprehensive benefits 7i7 ,in general ,the program provides comprehensive health care items and services to ,chi,p,a,c,c-eligible individuals 7as defined in paragraph 7#b77 in accordance with this section4 7ii7 ,scope and plan for services ,such items and services shall-- 7,i7 include items and services described in subsection 7c77#a77;,a7 to the extent such items and services are reasonable and necessary1 as determined by the ,state1 for the palliation and management of the ,,chipacc-eligible individual's serious illness or condition2 and 7,,ii7 be provided consistent with a comprehensive care plan developed by an interdisciplinary health professional team 7as defined in paragraph 7#d774 7iii7 ,qualifications of providers ,such items and services are provided through health care providers that-- 7,i7 meet such certification or other ,federal or ,state requirements as may be necessary to participate in the program of medical assistance under this title or in the program under title ,,xviii2 and 7,,ii7 maintain records on ,chi,p,a,c,c-eligible individuals enrolled in the program and to whom the provider furnishes services1 reflecting both the specific care and services furnished by the provider and the relationship of those services to the comprehensive plan of care for that individual and to the delivery of other services4 7#b7 ,chi,p,a,c,c-eligible individual ,the term ,chi,p,a,c,c-eligible individual means1 with respect to a ,chi,p,a,c,c1 an individual-- 7,a7 who1 at the time of enrollment in the ,chi,p,a,c,c1 is under #ba years of age2 7,b7 who resides in the service area of a ,chi,p,a,c,c1 as defined by the ,state administering agency2 7,c7 who is eligible for medical assistance under the ,state plan without regard to this section2 7,d7 who suffers from a serious illness or health condition and for whom there is a reasonable likelihood that the individual's life will be threatened by such illness or condition2 and 7,e7 whose health status is expected to decline because of such illness or condition before attaining the age of #ba4 7#c7 ,chi,p,a,c,c coordinator ,the term ,chi,p,a,c,c coordinator means1 with respect to a ,chi,p,a,c,c1 an entity 7which may be the ,state administering agency or another entity under an arrangement with such an agency7 that1 through the assignment of one or more case managers-- 7,a7 directs1 supervises1 and assures the coordination of comprehensive services to ,chi,p,a,c,c-eligible individuals enrolled in the ,chi,p,a,c,c2 and 7,b7 assures the direct and continuous involvement of an interdisciplinary health professional team in managing and coordinating the provision of care and services within the coordinator's responsibility to each such enrolled individual4 7#d7 ,interdisciplinary health professional team ,the term interdisciplinary health professional team means1 with respect to a ,chi,p,a,c,c1 a group of health professionals that-- 7,a7 includes at least-- 7i7 one physician 7as defined in section #ahfa7r772 7ii7 one registered professional nurse2 7iii7 one social worker1 pastoral counselor1 or other counselor2 and 7iv7 one case manager who may be one of the individuals described in clauses 7i7 through 7iii72 7,b7 develops a comprehensive plan of care for ,chi,p,a,c,c-eligible individuals enrolled with the ,chi,p,a,c,c and furnishes1 or supervises the provision of care and services described in subsection 7c77#a7 to an individual enrolled in the ,chi,p,a,c,c in a manner that takes into account the best interests of such individual and such individual's family2 and 7,c7 through direct action and communication with health care providers furnishing services under the ,chi,p,a,c,c1 on behalf of or under the direction or supervision of1 a ,state administering agency or a ,chi,p,a,c,c coordinator1 coordinates the care and services furnished to such enrollees4 7#e7 ,palliative services ,the term palliative services means patient and family-centered care that optimizes quality of life for an individual with a serious illness or condition by-- 7,a7 anticipating1 preventing1 and treating the individual's suffering throughout the continuum of illness2 7,b7 addressing the physical1 intellectual1 emotional1 social and spiritual needs of the individual2 and 7,c7 facilitating the individual's autonomy1 access to information1 and choice4 7#f7 ,state administering agency ,the term ,state administering agency means the ,state agency administering the ,state plan under this title 7or a waiver of such plan74 7c7 ,scope of benefits 7#a7 ,in general ,under a ,chi,p,a,c,c of a ,state1 the ,state administering agency shall assure that-- 7,a7 an individual enrolled in the ,chi,p,a,c,c is covered for1 at least-- 7i7 comprehensive1 integrated palliative and curative services2 7ii7 any long-term care services and supports provided under the ,state plan under this title 7or waiver of such plan72 7iii7 counseling services and expressive therapy2 7iv7 respite care2 and 7v7 anticipatory bereavement services to the immediate family members of the ,chi,p,a,c,c-eligible individual2 and 7,b7 the ,chi,p,a,c,c is operated1 and the services to enrolled individuals are furnished1 in a manner that is consistent with ,standards of ,care and ,practice ,guidelines developed by ,children's ,hospice ,international for a ,program of ,all-,inclusive ,care for ,children 7as in effect as of the date of the enactment of this section or such later date as the ,secretary may specify7 or such other standards as the ,secretary may provide4 7#b7 ,construction ,nothing in this subsection shall be construed to preclude a ,chi,p,a,c,c-eligible individual's eligibility to receive other services under the ,state plan 7or a waiver of such plan71 including early and periodic screening1 diagnostic1 and treatment services under section #aije7;a77#d77;,b74 7#c7 ,quality assurance2 patient safeguards 7,a7 ,in general ,with respect to a ,chi,p,a,c,c1 quality assurance and patient safeguards shall be established by the ,state administering agency or shall be consistent with existing ,state systems4 7,b7 ,construction ,nothing in this subsection shall be construed as preventing the ,secretary from imposing requirements to ensure the health and safety of individuals enrolled in a ,chi,p,a,c,c under this section that are in addition to those otherwise provided under this section4 7#d7 ,cost-sharing waiver ,a ,state administering agency may1 in the case of a ,chi,p,a,c,c-eligible individual enrolled in the ,state's ,chi,p,a,c,c1 waive deductibles1 copayments1 coinsurance1 or other cost-sharing that would otherwise apply under the ,state plan under this title4 7d7 ,eligibility determinations 7#a7 ,in general ,in determining whether an individual is a ,chi,p,a,c,c-eligible individual1 the ,state administering agency shall conduct an independent evaluation and assessment1 which shall include at least the following3 7,a7 ,consultation with appropriate treating and consulting health and support professionals caring for the individual4 7,b7 ,an examination of the individual's relevant history1 medical records1 and care and support needs1 guided by best practices and research on effective strategies that result in improved health and quality of life outcomes4 7,c7 ,to the extent appropriate1 consultation with the individual1 individual's family1 guardian1 or other responsible individual4 7#b7 ,recordkeeping2 appeals ,any entity making the eligibility determination under paragraph 7#a7 under contract with the ,state administering agency shall be subject to the recordkeeping and appeals processes requirements specified in section #aijb7;a77#c74 7e7 ,payments to health care providers and ,chi,p,a,c,c coordinators under ,chi,p,a,c,c ,payments to health care providers1 a ,chi,p,a,c,c coordinator1 or an interdisciplinary health professional team furnishing items and services under a ,chi,p,a,c,c shall be paid on a capitated or fee-for-service basis 7or as otherwise allowable under the ,state plan under this title74 7f7 ,applicability of requirements ,with respect to carrying out a ,chi,p,a,c,c under this section1 the following requirements of this title 7and regulations relating to such requirements7 shall not apply3 7#a7 ,section #aijb7;a77#a71 relating to any requirement that ,chi,p,a,c,cs or ,chi,p,a,c,c services be provided in all areas of a ,state4 7#b7 ,section #aijb7;a77#aj71 insofar as such section relates to comparability of services among different population groups4 7#c7 ,sections #aijb7;a77#bc7 and #aiae7;b77#d71 relating to freedom of choice of providers4 7#d7 ,section #aijc7m77#b77;,a71 insofar as it restricts a ,chi,p,a,c,c provider from receiving prepaid capitation payments4 7#e7 ,section #aije7o71 limiting the scope of hospice care4 7#f7 ,such other provisions of this title that the ,secretary determines are inapplicable4 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,s7 ,section #aidg 7relating to ,medicaid children's program of all-inclusive coordinated care74 4 7c7 ,continued demonstration project authority ,section #aidg of the ,social ,security ,act1 as added by subsection 7a71 shall not be construed as preventing a ,state from developing1 or the ,secretary of ,health and ,human ,services from approving1 a project similar to or related to ,chi,p,a,c,cs 7as described in such section7 under alternative authorities1 including demonstration project and waiver authorities under title ,,xix of such ,act or other provisions of such ,act4