ACE Kids Act of 2019

II 116TH CONGRESS 1ST SESSION S. 317 To amend title XIX of the Social Security Act to provide States with the option of providing coordinated care for children with complex medical conditions through a health home. IN THE SENATE OF THE UNITED STATES FEBRUARY 4, 2019 Mr. GRASSLEY (for himself and Mr. BENNET) introduced the following bill; 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 home. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Advancing Care for 4 Exceptional Kids Act of 2019’’ or the ‘‘ACE Kids Act of 5 2019’’. 6 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 2 •S 317 IS SEC. 2. STATE OPTION TO PROVIDE COORDINATED CARE 1 THROUGH A HEALTH HOME FOR CHILDREN 2 WITH MEDICALLY COMPLEX CONDITIONS. 3 Title XIX of the Social Security Act (42 U.S.C. 1396 4 et seq.) is amended by inserting after section 1945 the 5 following new section: 6 ‘‘SEC. 1945A. STATE OPTION TO PROVIDE COORDINATED 7 CARE THROUGH A HEALTH HOME FOR CHIL- 8 DREN WITH MEDICALLY COMPLEX CONDI- 9 TIONS. 10 ‘‘(a) IN GENERAL.—Notwithstanding section 11 1902(a)(1) (relating to statewideness) and section 12 1902(a)(10)(B) (relating to comparability), beginning Oc- 13 tober 1, 2022, a State, at its option as a State plan 14 amendment, may provide for medical assistance under this 15 title to children with medically complex conditions who 16 choose to enroll in a health home under this section by 17 selecting a designated provider, a team of health care pro- 18 fessionals operating with such a provider, or a health team 19 as the child’s health home for purposes of providing the 20 child with health home services. 21 ‘‘(b) HEALTH HOME QUALIFICATION STANDARDS.— 22 The Secretary shall establish standards for qualification 23 as a health home for purposes of this section. Such stand- 24 ards shall include requiring designated providers, teams 25 of health care professionals operating with such providers, 26 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 3 •S 317 IS and health teams to demonstrate to the State the ability 1 to do the following: 2 ‘‘(1) Coordinate prompt care for children with 3 medically complex conditions, including access to pe- 4 diatric emergency services at all times. 5 ‘‘(2) Develop an individualized comprehensive 6 pediatric family-centered care plan for children with 7 medically complex conditions that accommodates pa- 8 tient preferences. 9 ‘‘(3) Work in a culturally and linguistically ap- 10 propriate manner with the family of a child with 11 medically complex conditions to develop and incor- 12 porate into such child’s care plan, in a manner con- 13 sistent with the needs of the child and the choices 14 of the child’s family, ongoing home care, community- 15 based pediatric primary care, pediatric inpatient 16 care, social support services, and local hospital pedi- 17 atric emergency care. 18 ‘‘(4) Coordinate access to— 19 ‘‘(A) subspecialized pediatric services and 20 programs for children with medically complex 21 conditions, including the most intensive diag- 22 nostic, treatment, and critical care levels as 23 medically necessary; and 24 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 4 •S 317 IS ‘‘(B) palliative services if the State pro- 1 vides such services under the State plan (or a 2 waiver of such plan). 3 ‘‘(5) Coordinate care for children with medically 4 complex conditions with out-of-State providers fur- 5 nishing care to such children to the maximum extent 6 practicable for the families of such children and 7 where medically necessary, in accordance with guid- 8 ance issued under subsection (e)(1) and section 9 431.52 of title 42, Code of Federal Regulations. 10 ‘‘(6) Collect and report information under sub- 11 section (g)(1). 12 ‘‘(c) PAYMENTS.— 13 ‘‘(1) IN GENERAL.—A State shall provide a des- 14 ignated provider, a team of health care professionals 15 operating with such a provider, or a health team 16 with payments for the provision of health home serv- 17 ices to each child with medically complex conditions 18 that selects such provider, team of health care pro- 19 fessionals, or health team as the child’s health home. 20 Payments made to a designated provider, a team of 21 health care professionals operating with such a pro- 22 vider, or a health team for such services shall be 23 treated as medical assistance for purposes of section 24 1903(a), except that, during the first 2 fiscal year 25 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 5 •S 317 IS quarters that the State plan amendment is in effect, 1 the Federal medical assistance percentage applicable 2 to such payments shall be increased by 15 percent- 3 age points, but in no case may exceed 90 percent. 4 ‘‘(2) METHODOLOGY.— 5 ‘‘(A) IN GENERAL.—The State shall speci- 6 fy in the State plan amendment the method- 7 ology the State will use for determining pay- 8 ment for the provision of health home services. 9 Such methodology for determining payment— 10 ‘‘(i) may be tiered to reflect, with re- 11 spect to each child with medically complex 12 conditions provided such services by a des- 13 ignated provider, a team of health care 14 professionals operating with such a pro- 15 vider, or a health team, the severity or 16 number of each such child’s chronic condi- 17 tions, life-threatening illnesses, disabilities, 18 or rare diseases, or the specific capabilities 19 of the provider, team of health care profes- 20 sionals, or health team; and 21 ‘‘(ii) shall be established consistent 22 with section 1902(a)(30)(A). 23 ‘‘(B) ALTERNATE MODELS OF PAYMENT.— 24 The methodology for determining payment for 25 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 6 •S 317 IS provision of health home services under this 1 section shall not be limited to a per-member 2 per-month basis and may provide (as proposed 3 by the State and subject to approval by the 4 Secretary) for alternate models of payment. 5 ‘‘(3) PLANNING GRANTS.— 6 ‘‘(A) IN GENERAL.—Beginning October 1, 7 2022, the Secretary may award planning grants 8 to States for purposes of developing a State 9 plan amendment under this section. A planning 10 grant awarded to a State under this paragraph 11 shall remain available until expended. 12 ‘‘(B) STATE CONTRIBUTION.—A State 13 awarded a planning grant shall contribute an 14 amount equal to the State percentage deter- 15 mined under section 1905(b) (without regard to 16 section 5001 of Public Law 111–5) for each fis- 17 cal year for which the grant is awarded. 18 ‘‘(C) LIMITATION.—The total amount of 19 payments made to States under this paragraph 20 shall not exceed $5,000,000. 21 ‘‘(d) COORDINATING CARE.— 22 ‘‘(1) HOSPITAL NOTIFICATION.—A State with a 23 State plan amendment approved under this section 24 shall require each hospital that is a participating 25 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 7 •S 317 IS provider under the State plan (or a waiver of such 1 plan) to establish procedures for, in the case of a 2 child with medically complex conditions who is en- 3 rolled in a health home pursuant to this section and 4 seeks treatment in the emergency department of 5 such hospital, notifying the health home of such 6 child of such treatment. 7 ‘‘(2) EDUCATION WITH RESPECT TO AVAIL- 8 ABILITY OF HEALTH HOME SERVICES.—In order for 9 a State plan amendment to be approved under this 10 section, a State shall include in the State plan 11 amendment a description of the State’s process for 12 educating providers participating in the State plan 13 (or a waiver of such plan) on the availability of 14 health home services for children with medically 15 complex conditions, including the process by which 16 such providers can refer such children to a des- 17 ignated provider, team of health care professionals 18 operating such a provider, or health team for the 19 purpose of establishing a health home through which 20 such children may receive such services. 21 ‘‘(3) FAMILY EDUCATION.—In order for a State 22 plan amendment to be approved under this section, 23 a State shall include in the State plan amendment 24 a description of the State’s process for educating 25 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 8 •S 317 IS families with children eligible to receive health home 1 services pursuant to this section of the availability of 2 such services. Such process shall include the partici- 3 pation of family-to-family entities or other public or 4 private organizations or entities who provide out- 5 reach and information on the availability of health 6 care items and services to families of individuals eli- 7 gible to receive medical assistance under the State 8 plan (or a waiver of such plan). 9 ‘‘(4) MENTAL HEALTH COORDINATION.—A 10 State with a State plan amendment approved under 11 this section shall consult and coordinate, as appro- 12 priate, with the Secretary in addressing issues re- 13 garding the prevention and treatment of mental ill- 14 ness and substance use among children with medi- 15 cally complex conditions receiving health home serv- 16 ices under this section. 17 ‘‘(e) GUIDANCE ON COORDINATING CARE FROM 18 OUT-OF-STATE PROVIDERS.— 19 ‘‘(1) IN GENERAL.—Not later than October 1, 20 2020, the Secretary shall issue (and update as the 21 Secretary determines necessary) guidance to State 22 Medicaid directors on— 23 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 9 •S 317 IS ‘‘(A) best practices for using out-of-State 1 providers to provide care to children with medi- 2 cally complex conditions; 3 ‘‘(B) coordinating care for such children 4 provided by such out-of-State providers (includ- 5 ing when provided in emergency and non-emer- 6 gency situations); 7 ‘‘(C) reducing barriers for such children 8 receiving care from such providers in a timely 9 fashion; and 10 ‘‘(D) processes for screening and enrolling 11 such providers in the respective State plan (or 12 a waiver of such plan), including efforts to 13 streamline such processes or reduce the burden 14 of such processes on such providers. 15 ‘‘(2) STAKEHOLDER INPUT.—In carrying out 16 paragraph (1), the Secretary shall issue a request 17 for information to seek input from children with 18 medically complex conditions and their families, 19 States, providers (including children’s hospitals, hos- 20 pitals, pediatricians, and other providers), managed 21 care plans, children’s health groups, family and ben- 22 eficiary advocates, and other stakeholders with re- 23 spect to coordinating the care for such children pro- 24 vided by out-of-State providers. 25 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 10 •S 317 IS ‘‘(f) MONITORING.—A State shall include in the State 1 plan amendment— 2 ‘‘(1) a methodology for tracking reductions in 3 inpatient days and reductions in the total cost of 4 care resulting from improved care coordination and 5 management under this section; 6 ‘‘(2) a proposal for use of health information 7 technology in providing health home services under 8 this section and improving service delivery and co- 9 ordination across the care continuum (including the 10 use of wireless patient technology to improve coordi- 11 nation and management of care and patient adher- 12 ence to recommendations made by their provider); 13 and 14 ‘‘(3) a methodology for tracking prompt and 15 timely access to medically necessary care for children 16 with medically complex conditions from out-of-State 17 providers. 18 ‘‘(g) DATA COLLECTION.— 19 ‘‘(1) PROVIDER REPORTING REQUIREMENTS.— 20 In order to receive payments from a State under 21 subsection (c), a designated provider, a team of 22 health care professionals operating with such a pro- 23 vider, or a health team shall report to the State, at 24 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 11 •S 317 IS such time and in such form and manner as may be 1 required by the State, the following information: 2 ‘‘(A) With respect to each such provider, 3 team of health care professionals, or health 4 team, the name, National Provider Identifica- 5 tion number, address, and specific health care 6 services offered to be provided to children with 7 medically complex conditions who have selected 8 such provider, team of health care profes- 9 sionals, or health team as the health home of 10 such children. 11 ‘‘(B) Information on all applicable meas- 12 ures for determining the quality of health home 13 services provided by such provider, team of 14 health care professionals, or health team, in- 15 cluding, to the extent applicable, child health 16 quality measures and measures for centers of 17 excellence for children with complex needs de- 18 veloped under this title, title XXI, and section 19 1139A. 20 ‘‘(C) Such other information as the Sec- 21 retary shall specify in guidance. 22 When appropriate and feasible, such provider, team 23 of health care professionals, or health team, as the 24 VerDate Sep 11 2014 03:35 Feb 12, 2019 Jkt 089200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\S317.IS S317 kjohnson on DSK79L0C42 with BILLS 12 •S 317 IS case may be, shall use health information technology 1 in providing the State with such information. 2 ‘‘(2) STATE REPORTING REQUIREMENTS.— 3 ‘‘(A) COMPREHENSIVE REPORT.—A State 4 with a State plan amendment approved under 5 this section shall report to the Secretary (and, 6 upon request, to the Medicaid and CHIP Pay- 7 ment and Access Commission), at such time 8 and in such form and manner determined by 9 the Secretary to be reasonable and minimally 10 burdensome, the following information: 11 ‘‘(i) Information repor [Text truncated for display. 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