I 

116TH CONGRESS 

1ST SESSION H. R. 1226 

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 HOUSE OF REPRESENTATIVES 

FEBRUARY 14, 2019 

Ms. CASTOR of Florida (for herself, Mr. BILIRAKIS, Ms. ESHOO, and Ms. 

HERRERA BEUTLER) introduced the following bill; which was referred to 

the Committee on Energy and Commerce 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Advancing Care for 

5 Exceptional Kids Act of 2019’’ or the ‘‘ACE Kids Act of 

6 2019’’. 


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1 SEC. 2. STATE OPTION TO PROVIDE COORDINATED CARE 

2 THROUGH A HEALTH HOME FOR CHILDREN 

3 WITH MEDICALLY COMPLEX CONDITIONS. 

4 Title XIX of the Social Security Act (42 U.S.C. 1396 

5 et seq.) is amended by inserting after section 1945 the 

6 following new section: 

7 ‘‘SEC. 1945A. STATE OPTION TO PROVIDE COORDINATED 

8 CARE THROUGH A HEALTH HOME FOR CHIL9 DREN WITH MEDICALLY COMPLEX CONDI10 TIONS. 

11 ‘‘(a) IN GENERAL.—Notwithstanding section 

12 1902(a)(1) (relating to statewideness) and section 

13 1902(a)(10)(B) (relating to comparability), beginning Oc14 tober 1, 2022, a State, at its option as a State plan 

15 amendment, may provide for medical assistance under this 

16 title to children with medically complex conditions who 

17 choose to enroll in a health home under this section by 

18 selecting a designated provider, a team of health care pro19 fessionals operating with such a provider, or a health team 

20 as the child’s health home for purposes of providing the 

21 child with health home services. 

22 ‘‘(b) HEALTH HOME QUALIFICATION STANDARDS.— 

23 The Secretary shall establish standards for qualification 

24 as a health home for purposes of this section. Such stand25 ards shall include requiring designated providers, teams 

26 of health care professionals operating with such providers, 


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1 and health teams to demonstrate to the State the ability 

2 to do the following: 

3 ‘‘(1) Coordinate prompt care for children with 

4 medically complex conditions, including access to pe5 diatric emergency services at all times. 

6 ‘‘(2) Develop an individualized comprehensive 

7 pediatric family-centered care plan for children with 

8 medically complex conditions that accommodates pa9 tient preferences. 

10 ‘‘(3) Work in a culturally and linguistically ap11 propriate manner with the family of a child with 

12 medically complex conditions to develop and incor13 porate into such child’s care plan, in a manner con14 sistent with the needs of the child and the choices 

15 of the child’s family, ongoing home care, community16 based pediatric primary care, pediatric inpatient 

17 care, social support services, and local hospital pedi18 atric emergency care. 

19 ‘‘(4) Coordinate access to— 

20 ‘‘(A) subspecialized pediatric services and 

21 programs for children with medically complex 

22 conditions, including the most intensive diag23 nostic, treatment, and critical care levels as 

24 medically necessary; and 


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1 ‘‘(B) palliative services if the State pro2 vides such services under the State plan (or a 

3 waiver of such plan). 

4 ‘‘(5) Coordinate care for children with medically 

5 complex conditions with out-of-State providers fur6 nishing care to such children to the maximum extent 

7 practicable for the families of such children and 

8 where medically necessary, in accordance with guid9 ance issued under subsection (e)(1) and section 

10 431.52 of title 42, Code of Federal Regulations. 

11 ‘‘(6) Collect and report information under sub12 section (g)(1). 

13 ‘‘(c) PAYMENTS.— 

14 ‘‘(1) IN GENERAL.—A State shall provide a des15 ignated provider, a team of health care professionals 

16 operating with such a provider, or a health team 

17 with payments for the provision of health home serv18 ices to each child with medically complex conditions 

19 that selects such provider, team of health care pro20 fessionals, or health team as the child’s health home. 

21 Payments made to a designated provider, a team of 

22 health care professionals operating with such a pro23 vider, or a health team for such services shall be 

24 treated as medical assistance for purposes of section 

25 1903(a), except that, during the first 2 fiscal year 


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1 quarters that the State plan amendment is in effect, 

2 the Federal medical assistance percentage applicable 

3 to such payments shall be increased by 15 percent4 age points, but in no case may exceed 90 percent. 

5 ‘‘(2) METHODOLOGY.— 

6 ‘‘(A) IN GENERAL.—The State shall speci7 fy in the State plan amendment the method8 ology the State will use for determining pay9 ment for the provision of health home services. 

10 Such methodology for determining payment— 

11 ‘‘(i) may be tiered to reflect, with re12 spect to each child with medically complex 

13 conditions provided such services by a des14 ignated provider, a team of health care 

15 professionals operating with such a pro16 vider, or a health team, the severity or 

17 number of each such child’s chronic condi18 tions, life-threatening illnesses, disabilities, 

19 or rare diseases, or the specific capabilities 

20 of the provider, team of health care profes21 sionals, or health team; and 

22 ‘‘(ii) shall be established consistent 

23 with section 1902(a)(30)(A). 

24 ‘‘(B) ALTERNATE MODELS OF PAYMENT.— 

25 The methodology for determining payment for 


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1 provision of health home services under this 

2 section shall not be limited to a per-member 

3 per-month basis and may provide (as proposed 

4 by the State and subject to approval by the 

5 Secretary) for alternate models of payment. 

6 ‘‘(3) PLANNING GRANTS.— 

7 ‘‘(A) IN GENERAL.—Beginning October 1, 

8 2022, the Secretary may award planning grants 

9 to States for purposes of developing a State 

10 plan amendment under this section. A planning 

11 grant awarded to a State under this paragraph 

12 shall remain available until expended. 

13 ‘‘(B) STATE CONTRIBUTION.—A State 

14 awarded a planning grant shall contribute an 

15 amount equal to the State percentage deter16 mined under section 1905(b) (without regard to 

17 section 5001 of Public Law 111–5) for each fis18 cal year for which the grant is awarded. 

19 ‘‘(C) LIMITATION.—The total amount of 

20 payments made to States under this paragraph 

21 shall not exceed $5,000,000. 

22 ‘‘(d) COORDINATING CARE.— 

23 ‘‘(1) HOSPITAL NOTIFICATION.—A State with a 

24 State plan amendment approved under this section 

25 shall require each hospital that is a participating 


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1 provider under the State plan (or a waiver of such 

2 plan) to establish procedures for, in the case of a 

3 child with medically complex conditions who is en4 rolled in a health home pursuant to this section and 

5 seeks treatment in the emergency department of 

6 such hospital, notifying the health home of such 

7 child of such treatment. 

8 ‘‘(2) EDUCATION WITH RESPECT TO AVAIL9 ABILITY OF HEALTH HOME SERVICES.—In order for 

10 a State plan amendment to be approved under this 

11 section, a State shall include in the State plan 

12 amendment a description of the State’s process for 

13 educating providers participating in the State plan 

14 (or a waiver of such plan) on the availability of 

15 health home services for children with medically 

16 complex conditions, including the process by which 

17 such providers can refer such children to a des18 ignated provider, team of health care professionals 

19 operating such a provider, or health team for the 

20 purpose of establishing a health home through which 

21 such children may receive such services. 

22 ‘‘(3) FAMILY EDUCATION.—In order for a State 

23 plan amendment to be approved under this section, 

24 a State shall include in the State plan amendment 

25 a description of the State’s process for educating 


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1 families with children eligible to receive health home 

2 services pursuant to this section of the availability of 

3 such services. Such process shall include the partici4 pation of family-to-family entities or other public or 

5 private organizations or entities who provide out6 reach and information on the availability of health 

7 care items and services to families of individuals eli8 gible to receive medical assistance under the State 

9 plan (or a waiver of such plan). 

10 ‘‘(4) MENTAL HEALTH COORDINATION.—A 

11 State with a State plan amendment approved under 

12 this section shall consult and coordinate, as appro13 priate, with the Secretary in addressing issues re14 garding the prevention and treatment of mental ill15 ness and substance use among children with medi16 cally complex conditions receiving health home serv17 ices under this section. 

18 ‘‘(e) GUIDANCE ON COORDINATING CARE FROM

19 OUT-OF-STATE PROVIDERS.— 

20 ‘‘(1) IN GENERAL.—Not later than October 1, 

21 2020, the Secretary shall issue (and update as the 

22 Secretary determines necessary) guidance to State 

23 Medicaid directors on— 


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1 ‘‘(A) best practices for using out-of-State 

2 providers to provide care to children with medi3 cally complex conditions; 

4 ‘‘(B) coordinating care for such children 

5 provided by such out-of-State providers (includ6 ing when provided in emergency and non-emer7 gency situations); 

8 ‘‘(C) reducing barriers for such children 

9 receiving care from such providers in a timely 

10 fashion; and 

11 ‘‘(D) processes for screening and enrolling 

12 such providers in the respective State plan (or 

13 a waiver of such plan), including efforts to 

14 streamline such processes or reduce the burden 

15 of such processes on such providers. 

16 ‘‘(2) STAKEHOLDER INPUT.—In carrying out 

17 paragraph (1), the Secretary shall issue a request 

18 for information to seek input from children with 

19 medically complex conditions and their families, 

20 States, providers (including children’s hospitals, hos21 pitals, pediatricians, and other providers), managed 

22 care plans, children’s health groups, family and ben23 eficiary advocates, and other stakeholders with re24 spect to coordinating the care for such children pro25 vided by out-of-State providers. 


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1 ‘‘(f) MONITORING.—A State shall include in the State 

2 plan amendment— 

3 ‘‘(1) a methodology for tracking reductions in 

4 inpatient days and reductions in the total cost of 

5 care resulting from improved care coordination and 

6 management under this section; 

7 ‘‘(2) a proposal for use of health information 

8 technology in providing health home services under 

9 this section and improving service delivery and co10 ordination across the care continuum (including the 

11 use of wireless patient technology to improve coordi12 nation and management of care and patient adher13 ence to recommendations made by their provider); 

14 and 

15 ‘‘(3) a methodology for tracking prompt and 

16 timely access to medically necessary care for children 

17 with medically complex conditions from out-of-State 

18 providers. 

19 ‘‘(g) DATA COLLECTION.— 

20 ‘‘(1) PROVIDER REPORTING REQUIREMENTS.— 

21 In order to receive payments from a State under 

22 subsection (c), a designated provider, a team of 

23 health care professionals operating with such a pro24 vider, or a health team shall report to the State, at 


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1 such time and in such form and manner as may be 

2 required by the State, the following information: 

3 ‘‘(A) With respect to each such provider, 

4 team of health care professionals, or health 

5 team, the name, National Provider Identifica6 tion number, address, and specific health care 

7 services offered to be provided to children with 

8 medically complex conditions who have selected 

9 such provider, team of health care profes10 sionals, or health team as the health home of 

11 such children. 

12 ‘‘(B) Information on all applicable meas13 ures for determining the quality of health home 

14 services provided by such provider, team of 

15 health care professionals, or health team, in16 cluding, to the extent applicable, child health 

17 quality measures and measures for centers of 

18 excellence for children with complex needs de19 veloped under this title, title XXI, and section 

20 1139A. 

21 ‘‘(C) Such other information as the Sec22 retary shall specify in guidance. 

23 When appropriate and feasible, such provider, team 

24 of health care professionals, or health team, as the 


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1 case may be, shall use health information technology 

2 in providing the State with such information. 

3 ‘‘(2) STATE REPORTING REQUIREMENTS.— 

4 ‘‘(A) COMPREHENSIVE REPORT.—A State 

5 with a State plan amendment approved under 

6 this section shall report to the Secretary (and, 

7 upon request, to the Medicaid and CHIP Pay8 ment and Access Commission), at such time 

9 and in such form and manner determined by 

10 the Secretary to be reasonable and minimally 

11 burdensome, the following information: 

12 ‘‘(i) Information reported under para13 graph (1). 

14 ‘‘(ii) The number of children with 

15 medically complex conditions who have se16 lected a health home pursuant to this sec17 tion. 

18 ‘‘(iii) The nature, number, and preva19 lence of chronic conditions, life-threatening 

20 illnesses, disabilities, or rare diseases that 

21 such children have. 

22 ‘‘(iv) The type of delivery systems and 

23 payment models used to provide services to 

24 such children under this section. 


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1 ‘‘(v) The number and characteristics 

2 of designated providers, teams of health 

3 care professionals operating with such pro4 viders, and health teams selected as health 

5 homes pursuant to this section, including 

6 the number and characteristics of out-of7 State providers, teams of health care pro8 fessionals operating with such providers, 

9 and health teams who have provided health 

10 care items and services to such children. 

11 ‘‘(vi) The extent to which such chil12 dren receive health care items and services 

13 under the State plan. 

14 ‘‘(vii) Quality measures developed spe15 cifically with respect to health care items 

16 and services provided to children with 

17 medically complex conditions. 

18 ‘‘(B) REPORT ON BEST PRACTICES.—Not 

19 later than 90 days after a State has a State 

20 plan amendment approved under this section, 

21 such State shall submit to the Secretary, and 

22 make publicly available on the appropriate 

23 State website, a report on how the State is im24 plementing guidance issued under subsection 


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1 (e)(1), including through any best practices 

2 adopted by the State. 

3 ‘‘(h) RULE OF CONSTRUCTION.—Nothing in this sec4 tion may be construed— 

5 ‘‘(1) to require a child with medically complex 

6 conditions to enroll in a health home under this sec7 tion; 

8 ‘‘(2) to limit the choice of a child with medically 

9 complex conditions in selecting a designated pro10 vider, team of health care professionals operating 

11 with such a provider, or health team that meets the 

12 health home qualification standards established 

13 under subsection (b) as the child’s health home; or 

14 ‘‘(3) to reduce or otherwise modify— 

15 ‘‘(A) the entitlement of children with medi16 cally complex conditions to early and periodic 

17 screening, diagnostic, and treatment services 

18 (as defined in section 1905(r)); or 

19 ‘‘(B) the informing, providing, arranging, 

20 and reporting requirements of a State under 

21 section 1902(a)(43). 

22 ‘‘(i) DEFINITIONS.—In this section: 

23 ‘‘(1) CHILD WITH MEDICALLY COMPLEX CONDI24 TIONS.— 


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1 ‘‘(A) IN GENERAL.—Subject to subpara2 graph (B), the term ‘child with medically com3 plex conditions’ means an individual under 21 

4 years of age who— 

5 ‘‘(i) is eligible for medical assistance 

6 under the State plan (or under a waiver of 

7 such plan); and 

8 ‘‘(ii) has at least— 

9 ‘‘(I) one or more chronic condi10 tions that cumulatively affect three or 

11 more organ systems and severely re12 duces cognitive or physical functioning 

13 (such as the ability to eat, drink, or 

14 breathe independently) and that also 

15 requires the use of medication, dura16 ble medical equipment, therapy, sur17 gery, or other treatments; or 

18 ‘‘(II) one life-limiting illness or 

19 rare pediatric disease (as defined in 

20 section 529(a)(3) of the Federal 

21 Food, Drug, and Cosmetic Act (21 

22 U.S.C. 360ff(a)(3))). 

23 ‘‘(B) RULE OF CONSTRUCTION.—Nothing 

24 in this paragraph shall prevent the Secretary 

25 from establishing higher levels as to the number 


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1 or severity of chronic, life threatening illnesses, 

2 disabilities, rare diseases or mental health con3 ditions for purposes of determining eligibility 

4 for receipt of health home services under this 

5 section. 

6 ‘‘(2) CHRONIC CONDITION.—The term ‘chronic 

7 condition’ means a serious, long-term physical, men8 tal, or developmental disability or disease, including 

9 the following: 

10 ‘‘(A) Cerebral palsy. 

11 ‘‘(B) Cystic fibrosis. 

12 ‘‘(C) HIV/AIDS. 

13 ‘‘(D) Blood diseases, such as anemia or 

14 sickle cell disease. 

15 ‘‘(E) Muscular dystrophy. 

16 ‘‘(F) Spina bifida. 

17 ‘‘(G) Epilepsy. 

18 ‘‘(H) Severe autism spectrum disorder. 

19 ‘‘(I) Serious emotional disturbance or seri20 ous mental health illness. 

21 ‘‘(3) HEALTH HOME.—The term ‘health home’ 

22 means a designated provider (including a provider 

23 that operates in coordination with a team of health 

24 care professionals) or a health team selected by a 


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1 child with medically complex conditions (or the fam2 ily of such child) to provide health home services. 

3 ‘‘(4) HEALTH HOME SERVICES.— 

4 ‘‘(A) IN GENERAL.—The term ‘health 

5 home services’ means comprehensive and timely 

6 high-quality services described in subparagraph 

7 (B) that are provided by a designated provider, 

8 a team of health care professionals operating 

9 with such a provider, or a health team. 

10 ‘‘(B) SERVICES DESCRIBED.—The services 

11 described in this subparagraph shall include— 

12 ‘‘(i) comprehensive care management; 

13 ‘‘(ii) care coordination, health pro14 motion, and providing access to the full 

15 range of pediatric specialty and sub16 specialty medical services, including serv17 ices from out-of-State providers, as medi18 cally necessary; 

19 ‘‘(iii) comprehensive transitional care, 

20 including appropriate follow-up, from inpa21 tient to other settings; 

22 ‘‘(iv) patient and family support (in23 cluding authorized representatives); 

24 ‘‘(v) referrals to community and social 

25 support services, if relevant; and 


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1 ‘‘(vi) use of health information tech2 nology to link services, as feasible and ap3 propriate. 

4 ‘‘(5) DESIGNATED PROVIDER.—The term ‘des5 ignated provider’ means a physician (including a pe6 diatrician or a pediatric specialty or subspecialty 

7 provider), children’s hospital, clinical practice or 

8 clinical group practice, prepaid inpatient health plan 

9 or prepaid ambulatory health plan (as defined by the 

10 Secretary), rural clinic, community health center, 

11 community mental health center, home health agen12 cy, or any other entity or provider that is deter13 mined by the State and approved by the Secretary 

14 to be qualified to be a health home for children with 

15 medically complex conditions on the basis of docu16 mentation evidencing that the entity has the sys17 tems, expertise, and infrastructure in place to pro18 vide health home services. Such term may include 

19 providers who are employed by, or affiliated with, a 

20 children’s hospital. 

21 ‘‘(6) TEAM OF HEALTH CARE PROFES22 SIONALS.—The term ‘team of health care profes23 sionals’ means a team of health care professionals 

24 (as described in the State plan amendment under 

25 this section) that may— 


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1 ‘‘(A) include— 

2 ‘‘(i) physicians and other profes3 sionals, such as pediatricians or pediatric 

4 specialty or subspecialty providers, nurse 

5 care coordinators, dietitians, nutritionists, 

6 social workers, behavioral health profes7 sionals, physical therapists, occupational 

8 therapists, speech pathologists, nurses, in9 dividuals with experience in medical sup10 portive technologies, or any professionals 

11 determined to be appropriate by the State 

12 and approved by the Secretary; 

13 ‘‘(ii) an entity or individual who is 

14 designated to coordinate such a team; and 

15 ‘‘(iii) community health workers, 

16 translators, and other individuals with cul17 turally appropriate expertise; and 

18 ‘‘(B) be freestanding, virtual, or based at 

19 a children’s hospital, hospital, community 

20 health center, community mental health center, 

21 rural clinic, clinical practice or clinical group 

22 practice, academic health center, or any entity 

23 determined to be appropriate by the State and 

24 approved by the Secretary. 


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1 ‘‘(7) HEALTH TEAM.—The term ‘health team’ 

2 has the meaning given such term for purposes of 

3 section 3502 of Public Law 111–148.’’. 

Æ 


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