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<dc:title>115 S428 IS: Advancing Care for Exceptional Kids Act of 2017</dc:title>
<dc:publisher>U.S. Senate</dc:publisher>
<dc:date>2017-02-16</dc:date>
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<dc:language>EN</dc:language>
<dc:rights>Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.</dc:rights>
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<distribution-code display="yes">II</distribution-code><congress>115th CONGRESS</congress><session>1st Session</session><legis-num>S. 428</legis-num><current-chamber>IN THE SENATE OF THE UNITED STATES</current-chamber><action><action-date date="20170216">February 16, 2017</action-date><action-desc><sponsor name-id="S153">Mr. Grassley</sponsor> (for himself, <cosponsor name-id="S330">Mr. Bennet</cosponsor>, <cosponsor name-id="S349">Mr. Portman</cosponsor>, <cosponsor name-id="S387">Ms. Harris</cosponsor>, <cosponsor name-id="S342">Mr. Blunt</cosponsor>, <cosponsor name-id="S282">Mr. Nelson</cosponsor>, <cosponsor name-id="S307">Mr. Brown</cosponsor>, <cosponsor name-id="S377">Mr. Gardner</cosponsor>, and <cosponsor name-id="S229">Mrs. Murray</cosponsor>) introduced the following bill; which was read twice and referred to the <committee-name committee-id="SSFI00">Committee on Finance</committee-name></action-desc></action><legis-type>A BILL</legis-type><official-title>To amend titles XIX and XXI of the Social Security Act to authorize States to provide coordinated
			 care to children with complex medical conditions through enhanced
			 pediatric health homes, and for other purposes.</official-title></form>
	<legis-body display-enacting-clause="yes-display-enacting-clause">
 <section id="S1" section-type="section-one"><enum>1.</enum><header>Short title</header><text display-inline="no-display-inline">This Act may be cited as the <quote><short-title>Advancing Care for Exceptional Kids Act of 2017</short-title></quote> or the <quote><short-title>ACE Kids Act of 2017</short-title></quote>.</text>
		</section><section id="id3EA0103728B740F8A801FFF47A212A76"><enum>2.</enum><header>State option to provide  coordinated care to  children with complex medical
			 conditions through enhanced pediatric health homes</header>
 <subsection id="id902E13A9C3FB4A23BD4EC9078B784B7D"><enum>(a)</enum><header>State Medicaid plan amendment</header><text>Title XIX of the Social Security Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1396">42 U.S.C. 1396</external-xref> et seq.) is amended by inserting after section 1946 the following new section:</text>
				<quoted-block act-name="" id="idDC81F11618D841DFADC31EB62FEC66C0" style="traditional"><section id="id3BBF559AB2C149CFA84994897642BB82"><enum>1947.</enum><header>State Option to Provide Coordinated Care Through Enhanced Pediatric Health Homes for Children with
			 Complex
 Medical Conditions</header><subsection commented="no" display-inline="yes-display-inline" id="idBF18EA8A445244AA989FBADA13E4AF3F"><enum>(a)</enum><header>In general</header><text>Notwithstanding section 1902(a)(1) (relating to statewideness) and section 1902(a)(10)(B) (relating to comparability), beginning January 1, 2018, a State, at its option as a State plan amendment, may establish an EPHH program to provide medical assistance under this title for EPHH services furnished to children with complex medical conditions who are enrolled in an enhanced pediatric health home (also referred to in this section as an EPHH) under an EPHH program agreement.</text>
 </subsection><subsection commented="no" id="id97BFDDD027AA42329E7B9257A61771E6"><enum>(b)</enum><header>Definitions</header><text display-inline="yes-display-inline">In this section:</text> <paragraph id="id26DA6927BC3E4818A842F325BC0CAF8E"><enum>(1)</enum><header>Child with complex medical conditions</header><text display-inline="yes-display-inline">The term <term>child with complex medical conditions</term> means an individual who—</text>
 <subparagraph id="id474A2E0E3BAA4AD1B1E0335FCCC590A9"><enum>(A)</enum><text display-inline="yes-display-inline">is enrolled in a State plan under this title or title XXI or under a waiver of such plan;</text>
 </subparagraph><subparagraph id="idB3203FBB20AF45C0A9DC28C5FB83EFB1"><enum>(B)</enum><text display-inline="yes-display-inline">is under 21 years of age; and</text> </subparagraph><subparagraph id="id78D105937A944738B82E4903706F792D"><enum>(C)</enum><text display-inline="yes-display-inline">has a chronic medical condition or serious injury that—</text>
 <clause id="id863CF876F1AE48E8B993630F92E7A1B5"><enum>(i)</enum><text display-inline="yes-display-inline">affects two or more body systems;</text> </clause><clause id="idC372704295F9439A8FE86776D6BBB80B"><enum>(ii)</enum><text display-inline="yes-display-inline">affects cognitive or physical functioning (such as reducing the ability to perform the activities of daily living, including the ability to engage in movement or mobility, eat, drink, communicate, or breathe independently); and</text>
 </clause><clause id="id615BB9E1B92F410780C9D1A12F43BE10"><enum>(iii)</enum><text display-inline="yes-display-inline">either—</text> <subclause id="id023B9589BA3C41268EC86DF66010BC76"><enum>(I)</enum><text display-inline="yes-display-inline">requires intensive healthcare interventions (such as multiple medications, therapies, or durable medical equipment) and intensive care coordination to optimize health and avoid hospitalizations or emergency department visits; or</text>
 </subclause><subclause id="id77FBDBEEED20465BB990F072BE420387"><enum>(II)</enum><text display-inline="yes-display-inline">meets the criteria for medical complexity under existing risk adjustment methodologies using a recognized, publicly available pediatric group­ing system (such as the pediatric complex conditions classification system or the Pediatric Medical Complexity Algorithm) selected by the Secretary in close collaboration with the State agencies responsible for administering State plans under this title and a national panel of pediatric, pediatric specialty, and pediatric subspecialty experts.</text>
										</subclause></clause></subparagraph></paragraph><paragraph id="idD708258DE69C45C1B8A23E534D96D1B5"><enum>(2)</enum><header>Enhanced pediatric health home (EPHH); EPHH services; EPHH program agreement</header>
 <subparagraph id="id87CB5C22F9AF44FDBDF44CFFFBC9A74D"><enum>(A)</enum><header>In general</header><text display-inline="yes-display-inline">The terms <term>enhanced pediatric health home</term> and <term>EPHH</term> mean a provider-sponsored entity qualified to care for children with medically complex conditions that—</text>
 <clause id="id4AEF1E02A5574EAF82B0E10056008E30"><enum>(i)</enum><text display-inline="yes-display-inline">satisfies the requirements of subparagraph (B);</text> </clause><clause id="idDAF4A31279FF477FAC12C04837D28C69"><enum>(ii)</enum><text display-inline="yes-display-inline">has entered into an EPHH program agreement (as defined in subparagraph (D)) with a State; and</text>
 </clause><clause id="id567688664324482E9AED33315874CECA"><enum>(iii)</enum><text>provides or arranges for the provision of EPHH services (as defined in subparagraph (C)) to children with complex medical conditions.</text>
 </clause></subparagraph><subparagraph id="idA76EA896A2764326A9BB2E5D875B2EA3"><enum>(B)</enum><header>Requirements</header><text>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—</text>
 <clause id="id7D1DB2F1C35244DF9FE2C1AAEB7EB2B2"><enum>(i)</enum><text>has expertise in providing, integrating, or coordinating prompt care for children with complex medical conditions, including access to pediatric emergency services at all times;</text>
 </clause><clause id="id9A24E2B4861D4A7B8B8331956F1CC574"><enum>(ii)</enum><text>shall design an individualized comprehensive pediatric family-centered care plan for each child with complex medical conditions assigned to the entity, and provide seamless pediatric care coordination by a customized care team with a designated team lead for each such child and the child's family;</text>
 </clause><clause id="id87CC2C9C8A664A9EAA85695E692A7F92"><enum>(iii)</enum><text>shall work with the family of each child with complex medical conditions assigned to the entity to develop and incorporate ongoing home care, community-based pediatric primary care, care from the most medically appropriate or family-preferred children's hospital, social support services, and local hospital pediatric emergency care into the child's care plan consistent with family choice and the needs of the child;</text>
 </clause><clause id="id40E13F45A6F74844BCF573BB9B3C3158"><enum>(iv)</enum><text>shall include the families of children with complex medical conditions in the delivery of care and the development, operation, and evaluation of its services;</text>
 </clause><clause id="id5571277425A54540AC10B59D16C12308"><enum>(v)</enum><text>shall interact with children with complex medical conditions and their families in a culturally and linguistically appropriate manner;</text>
 </clause><clause id="id2D27C1949D79424F86F1514B28F85089"><enum>(vi)</enum><text>shall provide integration and access to sub-specialized pediatric services and programs for children with complex medical conditions, including the most intensive diagnostic, treatment, and critical care levels as medically necessary, including appropriate out-of-State care;</text>
 </clause><clause id="idAC18DF5239A544D194D8A3D085191081"><enum>(vii)</enum><text>can coordinate and integrate the full range of pediatric medical, surgical, and behavioral specialists and subspecialists needed, based on clinical qualifications (such as board certification) and patient preference, on the care team to care for children with complex medical conditions, as well as providers offering specialized services, such as rehabilitative and habilitative health care and private-duty nursing, if needed;</text>
 </clause><clause id="id16FE5E214664489AA5933AC9AC2769C6"><enum>(viii)</enum><text>can coordinate the provision of outpatient care needs, including durable medical equipment, medical supplies, and medical foods, if needed;</text>
 </clause><clause id="idADE842769E0A4CC29B83DE98751C84B4"><enum>(ix)</enum><text>can arrange and coordinate care for children with complex medical conditions from out-of-State providers to the maximum extent practicable for the families of such children and where medically necessary in accordance with the guidance provided under subsection (d)(1);</text>
 </clause><clause id="id01097CF95508489BBA393B96B25B7B82"><enum>(x)</enum><text>can coordinate and collect payments by liable third parties (including parties described in section 1902(a)(25)(A)) for care and services provided or arranged for by the entity; and</text>
 </clause><clause id="id811A653DC6504DEE88B05B6CB1DA6B90"><enum>(xi)</enum><text>can collect and report on pediatric quality measures appropriate for children with medically complex conditions as described in subsection (f)(1).</text>
									</clause></subparagraph><subparagraph id="id61ABED3B6D7F41D099BCD4AAA0CF9FFA"><enum>(C)</enum><header>EPHH services</header>
 <clause id="idA0018CDFC43343418BE5C77BEEE6F335"><enum>(i)</enum><header>In general</header><text>The term <term>EPHH services</term> means timely, high-quality pediatric services that are provided to children with complex medical conditions by an enhanced pediatric health home under an EPHH program agreement, including all services for which medical assistance is available under the State plan under this title of the State that is a party to the agreement (or an amendment to such plan) and the services described in clause (ii).</text>
 </clause><clause id="id7E655096EB564282A30F27D8F67E3AAD"><enum>(ii)</enum><header>Services described</header><text>The services described in this subparagraph are the following:</text> <subclause id="id63C391E8EDF3478AB4B04F39F31D109A"><enum>(I)</enum><text>Comprehensive pediatric care management, including inpatient and outpatient hospital services, oral health, behavioral health, and, where necessary, hospice care or other long-term services and supports as defined by the State.</text>
 </subclause><subclause id="id4E72D8C8F4A44619B7A0F77FA4C5BC9C"><enum>(II)</enum><text>Care coordination and health promotion.</text> </subclause><subclause id="idA288875E275443F594A5FEC9188E8752"><enum>(III)</enum><text>Comprehensive transitional care, including appropriate follow-up, from inpatient to other settings.</text>
 </subclause><subclause id="id0320D7E6C61648038E1575633A146A2D"><enum>(IV)</enum><text>Patient and family support (including authorized representatives).</text> </subclause><subclause id="id27302CDBD5D1449FA00A334B0A06FF25"><enum>(V)</enum><text>Referral to community and social support services, if relevant.</text>
 </subclause><subclause id="id56BE3FFDD9AD49939DF37567391CACFF"><enum>(VI)</enum><text>Use of health information technology to link services, as feasible and appropriate.</text> </subclause><subclause id="idB6AB1A6FF9F24BE0AAC8265AE3FB6AAF"><enum>(VII)</enum><text display-inline="yes-display-inline">Coordinating access to the full range of pediatric specialty and subspecialty medical services, including services from out-of-State providers, as medically necessary.</text>
 </subclause></clause></subparagraph><subparagraph id="id95BA2B8E016D4C36846F90B5A30EB403"><enum>(D)</enum><header>EPHH program agreement</header><text>The term <term>EPHH program agreement</term> means an agreement between a State and an EPHH that—</text> <clause id="id4CBEE52EA0DA49F78EBA8FB6A0B5FA11"><enum>(i)</enum><text>requires the EPHH to provide, or arrange for or coordinate the provision of, at a minimum, the services described in clause (ii) of subparagraph (C);</text>
 </clause><clause id="idA798CEF0E9464AA1BEF668A960E60978"><enum>(ii)</enum><text>requires the EPHH to carry out the requirements described in subparagraph (B) and comply with the data collection requirements of subsection (f);</text>
 </clause><clause id="id23AA0773077548E7983C5D74A8C605C5"><enum>(iii)</enum><text>provides that the State, with respect to children with complex medical conditions who are residents of the State and are assigned to the EPHH, shall establish policies and procedures for making payments to the EPHH for providing, arranging for, or coordinating EPHH services furnished to such children in another State;</text>
 </clause><clause id="idBFF743B193704A0C9541110FDB4CCC29"><enum>(iv)</enum><text>is subject to all relevant requirements imposed by Federal, State, and local law; and</text> </clause><clause id="id710E9785CC2F43BC92567CE26EF603DE"><enum>(v)</enum><text>contains such additional terms and conditions, not inconsistent with this section, as the parties may agree to.</text>
 </clause></subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="idD1B1BE44E1104D3C8C6E09291F1A4650"><enum>(3)</enum><header display-inline="yes-display-inline">State administering agency</header><text display-inline="yes-display-inline">The term <term>State administering agency</term> means the State agency (which shall be the State agency responsible for administering the State plan under this title or the State agency responsible for administering the State program under title V) responsible for administering EPHH program agreements under this section.</text>
							</paragraph></subsection><subsection id="id50108F66B7A4446BAC37139B558C9C61"><enum>(c)</enum><header>Family preference for an enhanced pediatric health home</header>
							<paragraph id="id383180FBED52452E8F325D518A738F3B"><enum>(1)</enum><header>In general</header>
 <subparagraph id="idFC712725F17E4181871324979781A62A"><enum>(A)</enum><header>Option to request enrollment</header><text>Each child with complex medical conditions who is eligible to receive EPHH services under a State plan amendment under this section shall have the option of requesting to be enrolled with an EPHH of the child's choice in accordance with a process established by the State.</text>
 </subparagraph><subparagraph id="id490349D0CC6F467A9B75EC006EF11375"><enum>(B)</enum><header>Enrollment requirement</header><text>An EPHH shall enroll any child with complex medical conditions who requests enrollment with the EPHH under subparagraph (A) unless the terms of the EPHH program agreement between the EPHH and the State allow the EPHH to decline the child's request on the basis of pre-established criteria specified in the agreement.</text>
 </subparagraph></paragraph><paragraph id="id33BA784DAEFC4CC2A11453E7C1316F84"><enum>(2)</enum><header>Outreach and education</header><text>Each State with a State plan amendment under this section shall conduct outreach and education activities to raise awareness among children with complex medical conditions and their families of the option to enroll in an EPHH and may provide assistance to such children and their families in making decisions with respect to such enrollment. The activities and assistance described in this paragraph may include activities and assistance carried out by—</text>
 <subparagraph id="id7C98D2E29406438A9DA91ABB8005D0A7"><enum>(A)</enum><text>family-to-family information centers under section 501(c);</text>
 </subparagraph><subparagraph id="idDDBAA8D0D0274B05BB13A0030BB1646B"><enum>(B)</enum><text>family navigators;</text> </subparagraph><subparagraph id="id5A746D4EACF0470D9C8E89761596DC56"><enum>(C)</enum><text>nonprofit organizations; and</text>
 </subparagraph><subparagraph id="id521FAFBB21C0439D9C97445E50C43148"><enum>(D)</enum><text>faith-based organizations.</text> </subparagraph></paragraph><paragraph id="id8840AB32441F4BB6A20B865AE06695B7"><enum>(3)</enum><header>Option to withdraw from program</header> <subparagraph id="id77137057BBA84C43A0DD376C3AC4C3C5"><enum>(A)</enum><header>In general</header><text>Any child with complex medical conditions that opts into an enhanced pediatric health home under this subsection shall have the option to disenroll from the home and to receive covered services under the State plan under this title or the State child health plan under title XXI.</text>
 </subparagraph><subparagraph id="id093D8640E04849E788AB46D13A5F4F97"><enum>(B)</enum><header>Effective date of dis­en­roll­ment</header><text>The disenrollment of a child with complex medical conditions from an enhanced pediatric health home shall take effect not later than 30 days after the child notifies the health home of the child's desire to disenroll.</text>
 </subparagraph></paragraph><paragraph commented="no" id="id8BBCD5BDB9F8422AA2D051FF63F632FC"><enum>(4)</enum><header>Transition assistance</header><text>In the case of an individual who is enrolled in an enhanced pediatric health home under this section and whose enrollment ceases for any reason (including that the individual no longer qualifies as a child with complex medical conditions, the termination of an EPHH program agreement, or otherwise), the enhanced pediatric health home shall continue to provide EPHH services to the individual during a transition period to ensure that the individual's care is not compromised, help the individual and the individual's family self-manage the individual's medical conditions to the maximum extent practicable, and provide assistance to the individual and the individual's family in obtaining necessary transitional care through appropriate referrals and making the individual's medical records available to new providers.</text>
							</paragraph></subsection><subsection id="id42EFE2BF8BAA4A3BB9BB3C833E28B8D8"><enum>(d)</enum><header>Coordinating care from out-of-State providers</header>
							<paragraph id="id8fcc6b4d2b584f4bb2d3ab42593a94b1"><enum>(1)</enum><header>Guidance</header>
 <subparagraph id="id4fdf14dc29024a08ae4bd02ab429432f"><enum>(A)</enum><header>In general</header><text>Not later than 2 years after the date of the enactment of this section, the Secretary shall issue guidance to State Medicaid Directors on best practices for ensuring that children with complex medical conditions receive prompt care from out-of-State providers when medically necessary, including guidance regarding—</text>
 <clause id="id08bf779d95724f0696d679ff6de59aa6"><enum>(i)</enum><text>arranging access to, and providing payment for, care for such children provided by out-of-State providers;</text>
 </clause><clause id="idbfb6321cfbdf4bf398549941714073d3"><enum>(ii)</enum><text>reducing barriers for such children receiving care from such providers in a timely fashion;</text> </clause><clause id="iddf85bbbea02c4c6aa3970b52639526ab"><enum>(iii)</enum><text>screening and enrolling out-of-State providers, including efforts to stream­line the process or reduce the burden on out-of-State providers that do not regularly treat children from the State or that only treat a small number of children from the State (which may include providing for payment to such a provider without requiring the provider to enroll in the State plan);</text>
 </clause><clause id="id41ce4f875cd145628b67397727df2a48"><enum>(iv)</enum><text>providing for payment to out-of-State providers that provide care for children with complex medical conditions in emergency and non-emergency situations; and</text>
 </clause><clause id="idEC8DE35D1D0A4462BF8F9827C847D43D"><enum>(v)</enum><text>how the guidance provided under this subparagraph interacts with the requirements of section 431.52 of title 42, Code of Federal Regulations.</text>
 </clause></subparagraph><subparagraph id="id23f5c45ee55a4574b161e06e162cabce"><enum>(B)</enum><header>Stakeholder input</header><text>In carrying out subparagraph (A), the Secretary shall issue a Request For Information to seek input from States, patient or family advocates and organizations that represent patients or families, children’s health groups, providers (including children’s hospitals, hospitals, pediatricians, and other pediatric providers), managed care plans, and other relevant stakeholders.</text>
 </subparagraph></paragraph><paragraph id="idB236028BE3D140FD94231A7E80D749C8"><enum>(2)</enum><header>Out-of-State policies for EPHHs</header><text display-inline="yes-display-inline">A State electing to provide medical assistance pursuant to subsection (a) shall provide information, consistent with guidance from the Secretary, to enhanced pediatric health homes receiving payment under this section, regarding the State’s policies and procedures for accessing care for children with complex medical conditions from out-of-State providers. For the purpose of helping facilitate medically necessary care for such children, such information shall include information on how out-of-State providers who provide services to such children can receive payment by such State Medicaid program.</text>
 </paragraph><paragraph id="idC7B10296BD144102BBAD02C140449457"><enum>(3)</enum><header>Best practices</header><text display-inline="yes-display-inline">A State electing to provide medical assistance pursuant to subsection (a) shall consider adopting best practices for providing access to out-of-State providers for children with complex medical conditions consistent with guidance provided by the Secretary under paragraph (1).</text>
							</paragraph></subsection><subsection id="idE54E6A6ED0CB458F8730A0FA43EC420D"><enum>(e)</enum><header>Payments to enhanced pediatric health homes</header>
 <paragraph commented="no" id="id8D141B91081F4CE093A80FF86FD8738F"><enum>(1)</enum><header>In general</header><text>A State shall provide an EPHH with payments for the provision of EPHH services to each child enrolled with an EPHH that has an EPHH program agreement with the State. Such payments for such services shall be treated in the same manner as payments under section 1945(c)(1), and, with respect to payments for services described in section 1945(h)(4)(B) provided by an EPHH to children with complex medical conditions enrolled with the EPHH during the first 8 fiscal quarters in which the EPHH program agreement is in effect, the Federal medical assistance percentage applicable to such payments shall be equal to the Federal medical assistance percentage specified in section 1945(c)(1).</text>
 </paragraph><paragraph id="idE98917ED545548E793345E253E7895D6"><enum>(2)</enum><header>Alternative payment model methodology</header><text display-inline="yes-display-inline">Payment to enhanced pediatric health homes for EPHH services furnished pursuant to a EPHH program agreement shall be made in a manner to be determined by the State using an agreed-upon alternative payment methodology developed under paragraph (4).</text>
							</paragraph><paragraph id="id288D4CB594664D9DB8AED4292E847352"><enum>(3)</enum><header>CMS guidance on alternative payment model methodologies</header>
 <subparagraph id="idC62922EC11B04840A5E00D15A5071E65"><enum>(A)</enum><header>In general</header><text>Not later than January 1, 2018, the Secretary shall publish guidance describing best practices for States to employ in designing and establishing alternative payment model methodologies which may be used by enhanced pediatric health homes with EPHH program agreements in developing equitable, alternative payment model methodologies for EPHH programs under paragraph (4). The guidance shall include descriptions of best practices related to designing shared savings and performance-based payment models that are risk-adjusted for the population enrolled in EPHH programs, and may include guidance related to other alternative payment models, including global payments and bundled payments.</text>
 </subparagraph><subparagraph id="id6FA5425D049142AE9CAAD2215B25038D"><enum>(B)</enum><header>Stakeholder input</header><text>In carrying out subparagraph (A), the Secretary shall issue a Request for Information to seek input from States, the Medicaid and CHIP Payment and Access Commission, providers (including children's hospitals, hospitals, pediatricians, and other pediatric providers), managed care plans, children's health groups, family and beneficiary advocates, the pediatric health care community, and other relevant stakeholders.</text>
 </subparagraph><subparagraph id="id85955F6F82DA44DA9EF377EE7FFD7BBF"><enum>(C)</enum><header>Data analysis</header><text display-inline="yes-display-inline">Beginning in the first year of the implementation of enhanced pediatric health homes, the Secretary shall analyze, for purposes of developing the guidance required under this paragraph—</text>
 <clause id="id057CF9F513114A578576B2DEB01872D0"><enum>(i)</enum><text display-inline="yes-display-inline">data collected under subsection (f)(1); and</text> </clause><clause id="id8436DD24F87840B399664539391DAB34"><enum>(ii)</enum><text display-inline="yes-display-inline">other data as the Secretary determines appropriate.</text>
									</clause></subparagraph></paragraph><paragraph id="id4AF3C30629994C9EB4B00F51230AD826"><enum>(4)</enum><header>Development of alternative payment model methodology</header>
 <subparagraph id="id8B5A6BC015BB4B53A08230C1EF44B03C"><enum>(A)</enum><header>In general</header><text display-inline="yes-display-inline">Each State, in collaboration with any enhanced pediatric health home that is operating an EPHH program under this section in the State, shall develop the payment methodology or methodologies for payment under the State plan in accordance with this subsection that—</text>
 <clause id="id988331BDB9F446E4AA763181A4ACDD39"><enum>(i)</enum><text display-inline="yes-display-inline">includes—</text> <subclause id="idB2F5F5ED75114E90ACC912732DA80C5D"><enum>(I)</enum><text display-inline="yes-display-inline">a risk adjustment method, re-insurance system, or risk-corridor procedure to account for variations in acuity of the children with complex medical conditions enrolled in enhanced pediatric health homes; and</text>
 </subclause><subclause id="id57D263C5D1234CB1B3761E3A04216B36"><enum>(II)</enum><text display-inline="yes-display-inline">an alternative payment model, which may include a shared savings approach or performance-based approach, such as a bundled payment or risk-reward payment model;</text>
 </subclause></clause><clause id="idE7B1599C7D554B6D8B8CF51CA1A94F3E"><enum>(ii)</enum><text>may be informed by guidance published by the Secretary under paragraph (3)(A); and</text> </clause><clause id="idE41BAF4A6F56476B933E4A95E2D2234D"><enum>(iii)</enum><text>considers data analyzed under paragraph (3)(C), to the maximum extent practicable.</text>
 </clause></subparagraph><subparagraph commented="no" display-inline="no-display-inline" id="id392C05EA20DF433CBCC1277717013431"><enum>(B)</enum><header display-inline="yes-display-inline">Approval by State Medicaid agency required</header><text display-inline="yes-display-inline">No payment may be made under a payment methodology developed under this paragraph unless—</text> <clause commented="no" display-inline="no-display-inline" id="idE21534B76D164E94B312E1B0CBD4B61E"><enum>(i)</enum><text display-inline="yes-display-inline">the relevant State agency responsible for administering the State plan under this title has approved such methodology; and</text>
 </clause><clause commented="no" display-inline="no-display-inline" id="id976CBEFB71A64797900E35A53425D3E7"><enum>(ii)</enum><text>the methodology is described in a State plan amendment that has received approval from the Secretary.</text>
									</clause></subparagraph></paragraph></subsection><subsection id="idb34df05717db4c4dafe058cd7dbad578"><enum>(f)</enum><header>Data and quality assurance</header>
 <paragraph id="id35FF5E8777A94885A436F46CC5B46F58"><enum>(1)</enum><header>Data</header><text>The data collection requirements under this paragraph, with respect to an enhanced pediatric health home, are as follows:</text>
 <subparagraph id="idbb335367b297439282bc090644f137e2"><enum>(A)</enum><text>The home, in collaboration with the State and the child’s health plan if appropriate, shall collect and submit claims data on claims submitted with respect to children who are furnished EPHH services. After approval by the State, such data shall be reported in a standardized format in a timely manner and made available to the public for the purposes of establishing a national database on such claims.</text>
 </subparagraph><subparagraph id="idbffa074362d24db1ab26826a6f8f975d"><enum>(B)</enum><text>The State shall submit to the Secretary such reports as the Secretary finds necessary to monitor the operation, cost, and effectiveness of the EPHH services furnished by the home.</text>
 </subparagraph></paragraph><paragraph id="H29822DC1D04244CEAA77E02AA6C2FA52"><enum>(2)</enum><header>Development of standards and measures</header><text display-inline="yes-display-inline">The Secretary shall, in consultation with States and enhanced pediatric health homes with EPHH program agreements under this section and national pediatric policy organizations<italic></italic>—</text>
 <subparagraph id="HF0DDBAAE3CED427087B1F05B35321B6B"><enum>(A)</enum><text>establish a national set of quality assurance and improvement protocols and procedures to apply under EPHH programs established under this section;</text>
 </subparagraph><subparagraph id="HAF290D7A07D6401BBBDF3AF9B33F77D1"><enum>(B)</enum><text>develop pediatric quality measures that are tailored to the care and treatment of children with complex medical conditions and account for the health and well-being, care coordination, child and family experience, and access to and cost of care for children with complex medical conditions;</text>
 </subparagraph><subparagraph id="H3DE5F97BA54A4B859D5130BB5770B576"><enum>(C)</enum><text>develop provider accessibility standards for access by children with complex medical conditions to EPHH services; and</text>
 </subparagraph><subparagraph id="H4D710CE85DDB45E0848E287945BA5BC8"><enum>(D)</enum><text>develop criteria for national pediatric-focused care coordination for children with complex medical conditions.</text>
 </subparagraph></paragraph><paragraph id="H103C6EE7F6534D85B147C429F5F2B996"><enum>(3)</enum><header>Use of existing quality measures</header><text display-inline="yes-display-inline">In carrying out paragraph (2), the Secretary shall consider incorporating, to the extent applicable, the following measures:</text>
 <subparagraph id="idCC29B59BDEB149A2BF1C690EF859639A"><enum>(A)</enum><text>Child health quality measures and measures for centers of excellence for children with complex needs developed under this title, title XXI, and section 1139A.</text>
 </subparagraph><subparagraph id="id384A1884CE414163A0C82E442722461A"><enum>(B)</enum><text>The Healthcare Effectiveness Data and Information Set (HEDIS).</text> </subparagraph><subparagraph id="id3179EF40FA654D52B293BFA57F2F0929"><enum>(C)</enum><text>Other existing quality measures, as considered appropriate by the Secretary.</text>
 </subparagraph></paragraph><paragraph id="id68F301C4A20C4480A1F4B420EE5413E5"><enum>(4)</enum><header>National pediatric policy organizations</header><text display-inline="yes-display-inline">For purposes of paragraph (2), the national pediatric policy organizations that the Secretary shall consult with shall include the following:</text>
 <subparagraph id="id7A666EDDE46B44B4BDFA2B6908F1353C"><enum>(A)</enum><text display-inline="yes-display-inline">Acute care children's hospitals.</text> </subparagraph><subparagraph id="idA2872A9379A843F092BAFCB5841A1E97"><enum>(B)</enum><text>Specialty pediatric hospitals.</text>
 </subparagraph><subparagraph id="id10C6995DA2424E07A61A53A1861E2A5E"><enum>(C)</enum><text>Subacute, rehabilitative, and long-term care pediatric hospitals.</text> </subparagraph><subparagraph id="id36BFD4340BE5468D8D06CF0F222526FB"><enum>(D)</enum><text>Pediatric providers, including primary care providers, specialists, and subspecialists.</text>
 </subparagraph><subparagraph id="id676F006594AF405F8575AAE5D4FD3908"><enum>(E)</enum><text>Pediatric home, community, and family care organizations, including organizations representing families or children with special needs.</text>
 </subparagraph><subparagraph id="id71281A023FC84AC88C7B7B6F83F6F1EE"><enum>(F)</enum><text>National pediatric policy organizations with specific expertise relating to children with complex medical conditions.</text>
 </subparagraph><subparagraph id="id71AEDF2327A3491A966A64E55D027220"><enum>(G)</enum><text>Such other entities as the Secretary shall determine appropriate.</text> </subparagraph></paragraph><paragraph id="HBAD16BD3595F4224AE3FA06529DA6EFA"><enum>(5)</enum><header>Standard Medicaid data set</header> <subparagraph id="HB815F84B26BC4A72983456A733A9626E"><enum>(A)</enum><header>In general</header><text>The Secretary, the States, and the enhanced pediatric health homes with EPHH program agreements under this section shall collaborate to obtain consistent and verifiable Medicaid Analytic Extract data or a comparable data set and shall establish data-sharing agreements to further support collaborative planning and care coordination for children with complex medical conditions.</text>
								</subparagraph><subparagraph id="HA015E0590DDF4E4EBB0EBE9990E78729"><enum>(B)</enum><header>Claims analysis</header>
 <clause id="idB2B523CA95D5476987D0C4521EF123AF"><enum>(i)</enum><header>Analysis by independent third party</header><text display-inline="yes-display-inline">The Secretary shall commission an independent third party to perform claims analysis on the data set developed under subparagraph (A) to determine the utilization of items and services furnished under EPHH programs to children with complex medical conditions, and the overall effectiveness of EPHH programs.</text>
 </clause><clause id="H34CBBC7B8C5C4932A566A41E5B080098"><enum>(ii)</enum><header>Report</header><text display-inline="yes-display-inline">For purposes of building a national database, the Secretary shall submit to Congress, and make publicly available on the Internet site of the Centers for Medicare &amp; Medicaid Services, a report on the analysis carried out under clause (i).</text>
									</clause></subparagraph></paragraph></subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
 </subsection><subsection id="HF1E387E0FA4745CF81926530AAAE40DB"><enum>(b)</enum><header>Application under CHIP</header><text>Section 2107(e)(1) of the Social Security Act (<external-xref legal-doc="usc" parsable-cite="usc/42/1397gg">42 U.S.C. 1397gg(e)(1)</external-xref>) is amended by adding at the end the following new subparagraph:</text>
				<quoted-block display-inline="no-display-inline" id="H4E00464D5D9544BA94673688D8DEC456" style="OLC">
 <subparagraph id="HF6CF1F3A19B546D1BAC56868855A6E4F"><enum>(P)</enum><text display-inline="yes-display-inline">Section 1947 (relating to the Medicaid EPHH program for children with complex medical conditions).</text></subparagraph><after-quoted-block>.</after-quoted-block></quoted-block> </subsection></section><section id="HDDB01A12CB8946779E8EE4D98B27DF1A"><enum>3.</enum><header>MACPAC report</header> <subsection id="HFE098A2553874EB58D40AD9E7440C99C"><enum>(a)</enum><header>In general</header><text display-inline="yes-display-inline">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 (<external-xref legal-doc="usc" parsable-cite="usc/42/1396">42 U.S.C. 1396</external-xref>) shall submit a report to Congress and the Secretary of Health and Human Services on children with complex medical conditions which includes the information described in subsection (b) and such recommendations as the Commission deems appropriate.</text>
 </subsection><subsection id="H53118A9BC54A47529A4192F8404F9942"><enum>(b)</enum><header>Information To be included</header><text>The information described in this subsection is the following information:</text> <paragraph id="HE8AEE909DA4D4C0FAD4CAA44328494B8"><enum>(1)</enum><text display-inline="yes-display-inline">The characteristics of children with complex medical conditions, including—</text>
 <subparagraph id="H5C4400D5D1E8444F92049150869D49F7"><enum>(A)</enum><text>a literature review examining—</text> <clause id="H96D33103B76C484B9C28045C96576508"><enum>(i)</enum><text display-inline="yes-display-inline">research on such children; and</text>
 </clause><clause id="H4095D34E5A8E4EA2815CE3A1502AF62F"><enum>(ii)</enum><text>clinical measures or other group­ings which enable comparison among such children; and</text> </clause></subparagraph><subparagraph id="HF0A201703DBF4FD7BE203724FC18FAB1"><enum>(B)</enum><text display-inline="yes-display-inline">information gathered from consultation with medical and academic experts engaged in research about or treatment of such children.</text>
 </subparagraph></paragraph><paragraph id="HE9F76F3DB0794564914CD31AC2E4F937"><enum>(2)</enum><text display-inline="yes-display-inline">Children with complex medical conditions who are enrolled in a State Medicaid plan under title XIX of the Social Security Act (or a waiver of such plan), including—</text>
 <subparagraph id="H8494F2D9C16B4A6599E51BE4C06CB569"><enum>(A)</enum><text>the number of such children;</text> </subparagraph><subparagraph id="HCAAA49A36ED94C63A140DFF36428EC7F"><enum>(B)</enum><text display-inline="yes-display-inline">the chronic conditions, serious injuries, life-threatening illnesses, or rare diseases that such children have;</text>
 </subparagraph><subparagraph id="H334AB427FE6A4E42AF1CBA467D81374D"><enum>(C)</enum><text display-inline="yes-display-inline">the number of such children receiving services under each delivery system or payment model and the type of payment model being used; and</text>
 </subparagraph><subparagraph id="H046EAC2EB9394C888A2AC3EF4F8CF2DA"><enum>(D)</enum><text>the extent to which such children receive care coordination services.</text> </subparagraph></paragraph><paragraph commented="no" display-inline="no-display-inline" id="H1B95D89FB4664E6AB9E71118BA99253E"><enum>(3)</enum><text display-inline="yes-display-inline">The pediatric providers who serve children with complex medical conditions.</text>
 </paragraph><paragraph commented="no" display-inline="no-display-inline" id="H0668472AD63545FFAE7A63E0DC81EE2F"><enum>(4)</enum><text display-inline="yes-display-inline">The extent to which children with complex medical conditions receive or are denied services from out-of-State providers that receive payment under the State Medicaid plan under title XIX of the Social Security Act (or a waiver of such plan) and any barriers to receiving such services in a timely fashion, including any variation in access to such services by delivery system.</text>
 </paragraph></subsection></section><section commented="no" display-inline="no-display-inline" id="idEB4F22C507B54CCEA517F6FEEC7BDC87"><enum>4.</enum><header>Report to Congress</header><text display-inline="no-display-inline">Not later than 5 years after the date of the enactment of this Act, the Secretary of Health and Human Services shall submit Congress, and make publicly available on the Internet site of the Centers for Medicare &amp; Medicaid Services, a report evaluating and assessing the enhanced pediatric health home program established under section 1947 of the Social Security Act (as added by section 2), for the purposes of determining—</text>
 <paragraph commented="no" display-inline="no-display-inline" id="id123AC4ECE292428EA1A379BA87B63DA9"><enum>(1)</enum><text>how the program might be improved; and</text> </paragraph><paragraph commented="no" display-inline="no-display-inline" id="id39A310DB1C5D4ACB84BD43D24C172BD2"><enum>(2)</enum><text>whether the program should be expanded to include pediatric populations that are not children with complex medical conditions (as such term is defined for purposes of the program) but who would still benefit from the type of care coordination provided by an enhanced pediatric health home.</text></paragraph></section></legis-body></bill>


