II 

116TH CONGRESS 

1ST SESSION S. 829 

To amend title XI of the Social Security Act to award cooperative agreements 

to improve care for individuals with advanced illnesses, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

MARCH 14, 2019 

Mr. WHITEHOUSE introduced the following bill; which was read twice and 

referred to the Committee on Finance 

A BILL 

To amend title XI of the Social Security Act to award 

cooperative agreements to improve care for individuals 

with advanced illnesses, and for other purposes. 

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 ‘‘Removing Barriers to 

5 Person- and Family-Centered Care Act of 2019’’. 

6 SEC. 2. COOPERATIVE AGREEMENTS TO IMPROVE CARE 

7 FOR INDIVIDUALS WITH ADVANCED ILL8 NESSES. 

9 (a) IN GENERAL.—Section 1115A of the Social Secu10 rity Act (42 U.S.C. 1315a) is amended— 


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1 (1) in the last sentence of subparagraph (A) of 

2 subsection (b)(2), by inserting ‘‘, and the model de3 scribed in subsection (h)’’ before the period at the 

4 end; and 

5 (2) by adding at the end the following new sub6 section: 

7 ‘‘(h) COOPERATIVE AGREEMENTS TO IMPROVE CARE

8 FOR INDIVIDUALS WITH ADVANCED ILLNESSES.— 

9 ‘‘(1) IN GENERAL.—The Secretary shall, acting 

10 through the Centers for Medicare & Medicaid Serv11 ices, award up to 15 cooperative agreements to eligi12 ble entities with the goals of— 

13 ‘‘(A) addressing gaps in community capac14 ity to provide high-quality, person- and family15 centered care; 

16 ‘‘(B) improving the integration and coordi17 nation of clinical and nonclinical services; 

18 ‘‘(C) expanding access to a comprehensive 

19 care planning process and services; and 

20 ‘‘(D) developing and implementing alter21 native payment models that provide account22 ability for health care costs and quality out23 comes. 

24 ‘‘(2) ELIGIBLE ENTITY.—In this subsection, the 

25 term ‘eligible entity’ means the following: 


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1 ‘‘(A) A State Medicaid agency. 

2 ‘‘(B) A State, local, or tribal health agen3 cy. 

4 ‘‘(C) An accountable care organization 

5 under section 1899 or an accountable care or6 ganization model tested under title XVIII or 

7 with respect to such title under this section. 

8 ‘‘(D) A Lead Organization (as defined in 

9 paragraph (9)). 

10 ‘‘(E) A quality improvement organization, 

11 such as a Quality Innovation Network–Quality 

12 Improvement Organization with a contract pur13 suant to part B of this title. 

14 ‘‘(3) APPLICATION.— 

15 ‘‘(A) IN GENERAL.—Eligible entities seek16 ing a cooperative agreement under this sub17 section shall submit to the Secretary an applica18 tion, at such time, and in such manner as the 

19 Secretary may require. An application must in20 clude— 

21 ‘‘(i) a list of participating practi22 tioners, providers of services, community23 based organizations, and other individuals 

24 and entities; 


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1 ‘‘(ii) a description of the target popu2 lation or populations and geographic serv3 ice area; 

4 ‘‘(iii) a description of the intended 

5 uses of amounts awarded under paragraph 

6 (4), and a plan for leveraging existing 

7 funding sources to deliver services to the 

8 target population or populations; 

9 ‘‘(iv) a description of the intended 

10 care delivery model and how the model 

11 supports high-quality, person- and family12 centered care; 

13 ‘‘(v) a plan for— 

14 ‘‘(I) working with community15 based organizations, including faith16 based organizations and aging and 

17 disability organizations; 

18 ‘‘(II) improving community-based 

19 supports for family caregivers; and 

20 ‘‘(III) increasing the number of 

21 individuals within the target popu22 lation or populations who— 

23 ‘‘(aa) have communicated 

24 their wishes regarding medical 

25 treatment using State or locally 


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1 recognized forms, such as ad2 vance directives or portable med3 ical orders; 

4 ‘‘(bb) have comprehensive 

5 care plans that are concrete and 

6 actionable; and 

7 ‘‘(cc) have access to commu8 nity-based palliative care services; 

9 and 

10 ‘‘(vi) other information as determined 

11 appropriate by the Secretary. 

12 ‘‘(4) AWARD AMOUNTS.— 

13 ‘‘(A) IN GENERAL.—The Secretary may 

14 award up to $5,000,000 under each cooperative 

15 agreement under this subsection. 

16 ‘‘(B) USE OF FUNDS.—Funds awarded 

17 under a cooperative agreement may be used for 

18 the following purposes: 

19 ‘‘(i) To develop and implement a care 

20 delivery model as described in paragraph 

21 (5)(B)(i) and an alternative payment 

22 model as described in paragraph (5)(B)(ii). 

23 ‘‘(ii) To conduct education and train24 ing for health care professionals, bene25 ficiaries and family caregivers, or commuVerDate Sep 11 2014 18:17 Mar 28, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S829.IS S829

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1 nity-based organizations in methods for 

2 documenting and sharing an individual’s 

3 care goals, preferences, and values under 

4 such model. 

5 ‘‘(iii) To hire staff to conduct care 

6 management and coordination activities as 

7 part of an interdisciplinary care team 

8 under such model. 

9 ‘‘(iv) To support the development of 

10 community-based palliative care teams and 

11 the delivery of related services. 

12 ‘‘(v) To modify, upgrade, or purchase 

13 health information technology, including 

14 technologies that support data aggregation 

15 and analytics, electronic exchange of health 

16 information, accessibility of an individual’s 

17 comprehensive care plan, or remote moni18 toring under such model. 

19 ‘‘(vi) To conduct other activities de20 termined appropriate by the Secretary. 

21 ‘‘(5) IMPLEMENTATION.— 

22 ‘‘(A) DURATION.—Each cooperative agree23 ment under this subsection shall be awarded for 

24 a period of 7 years. 


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1 ‘‘(B) PRE-IMPLEMENTATION PERIOD.— 

2 During the first 2 years of a cooperative agree3 ment, an awardee shall work with the Secretary 

4 to— 

5 ‘‘(i) develop a care delivery model 

6 using one or more of the waivers and ex7 panded services described in paragraphs 

8 (7) and (8); 

9 ‘‘(ii) develop an alternative payment 

10 model; and 

11 ‘‘(iii) identify a set of quality meas12 ures that will be reported on annually by 

13 participants in such model. 

14 ‘‘(C) MODEL IMPLEMENTATION.—Begin15 ning with the third year of a cooperative agree16 ment, an awardee— 

17 ‘‘(i) shall implement the care delivery 

18 model developed under subparagraph 

19 (B)(i) and the alternative payment model 

20 developed under subparagraph (B)(ii); 

21 ‘‘(ii) shall annually report data on 

22 quality measures identified under subpara23 graph (B)(iii) to the Secretary; and 

24 ‘‘(iii) may, in accordance with para25 graphs (7) and (8), receive waivers and 


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1 provide expanded services as described in 

2 such paragraphs, respectively, as part of a 

3 care delivery model that provides high4 quality, person- and family-centered care 

5 to the target population or populations. 

6 ‘‘(6) NOTIFICATION.—The Secretary shall pro7 vide guidance on notification and continuity-of-care 

8 plan requirements in the event a participating pro9 vider leaves a model pursuant to a cooperative 

10 agreement under this subsection. 

11 ‘‘(7) WAIVER OF CERTAIN REQUIREMENTS.—In 

12 addition to any waivers pursuant to subsection 

13 (d)(1), the Secretary shall include the following 

14 waivers of requirements and, where applicable, per15 mit Medicare Advantage organizations flexibility to 

16 waive such requirements, with respect to coverage 

17 of, and payment for, items and services furnished to 

18 individuals pursuant to a cooperative agreement 

19 under this subsection: 

20 ‘‘(A) COVERAGE OF SERVICES RELATED TO

21 AN INDIVIDUAL’S TERMINAL ILLNESS.—A waiv22 er of the requirement described in section 

23 1812(d)(2)(A) that an individual electing to re24 ceive hospice care shall be deemed to have 

25 waived all rights to have payment made under 


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1 title XVIII with respect to services described in 

2 clause (ii)(I) of such section. 

3 ‘‘(B) ALTERNATIVES IN FURNISHING OF

4 HOME CARE.—With respect to home health 

5 services furnished to an individual by a home 

6 health agency, a waiver of the requirements de7 scribed in sections 1814(a)(2) and 

8 1835(a)(2)(A), that— 

9 ‘‘(i) a physician makes the certifi10 cation (and recertification, where such 

11 services are provided over a period of time) 

12 as described in such sections; 

13 ‘‘(ii) a plan for furnishing such serv14 ices to such individual is established and 

15 periodically reviewed by a physician; 

16 ‘‘(iii) such services are or were fur17 nished while the individual was under the 

18 care of a physician; and 

19 ‘‘(iv) the physician documents that the 

20 individual has had a face-to-face encounter 

21 as described in such sections, 

22 provided that a nurse practitioner, clinical 

23 nurse specialist, or physician assistant (as those 

24 terms are defined in section 1861(aa)(5)), in 

25 accordance with State law, makes such certifiVerDate Sep 11 2014 18:17 Mar 28, 2019 Jkt 089200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S829.IS S829

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1 cation and recertification, establishes and peri2 odically reviews such plan, has the individual 

3 under their care when such services are or were 

4 furnished, and documents such face-to-face en5 counter. 

6 ‘‘(C) ALTERNATIVE CERTIFICATION FOR

7 HOSPICE CARE.—A waiver of the requirements 

8 described in subparagraphs (A) and (B) of sec9 tion 1814(a)(7) that an individual’s attending 

10 physician and the medical director (or physician 

11 member of the interdisciplinary group described 

12 in section 1861(dd)(2)(B)) of the hospice pro13 gram providing (or arranging for) the individ14 ual’s hospice care certify that the individual is 

15 terminally ill and periodically review the written 

16 plan for hospice care, provided that such certifi17 cation and review is conducted by a nurse prac18 titioner, clinical nurse specialist, or physician 

19 assistant (as those terms are defined in section 

20 1861(aa)(5)) in accordance with State law. 

21 ‘‘(D) COVERAGE OF SKILLED NURSING

22 SERVICES WITHOUT INPATIENT STAY.—With 

23 respect to extended care services furnished to 

24 an individual by a skilled nursing facility, a 

25 waiver of the requirement described in section 


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1 1861(i) that an individual must have been an 

2 inpatient in a hospital for not less than 3 con3 secutive days before his discharge and transfer 

4 to the skilled nursing facility before such ex5 tended care services may be deemed post-hos6 pital extended care services. 

7 ‘‘(E) COVERAGE OF HOME HEALTH CARE

8 WITHOUT HOMEBOUND STATUS REQUIRE9 MENT.—With respect to home health services 

10 furnished to an individual by a home health 

11 agency (as defined in section 1861(o)), a waiver 

12 of the requirements described in sections 

13 1814(a)(2)(C) and 1835(a)(2)(A) that the indi14 vidual is or was confined to his or her home. 

15 ‘‘(8) AVAILABILITY OF EXPANDED SERVICES.— 

16 A hospice program that participates in an alter17 native payment model pursuant to a cooperative 

18 agreement under this subsection may receive an add19 on payment, as determined by the Secretary, for fur20 nishing the following services to the target popu21 lation or populations under such model: 

22 ‘‘(A) INPATIENT ALTERNATIVE TO ROU23 TINE HOSPICE CARE.— 

24 ‘‘(i) IN GENERAL.—Notwithstanding 

25 regulations in effect prior to the enactment 


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1 of this subsection, if an assessment meet2 ing such requirements as the Secretary de3 termines appropriate has been made that 

4 the home of an individual who is certified 

5 for hospice care and has elected to receive 

6 hospice care is unsafe or unsuitable for the 

7 provision of such care, such individual may 

8 receive such care in an inpatient setting, 

9 including a hospice program that meets the 

10 conditions of participation specified in sec11 tion 418.110 of title 42, Code of Federal 

12 Regulations (as in effect on the date of en13 actment of this subparagraph), or a skilled 

14 nursing facility that meets the standards 

15 specified in subsections (b) and (e) of such 

16 section, for the duration an individual has 

17 elected to receive hospice care. The assess18 ment described in the preceding sentence 

19 may be conducted by the individual’s at20 tending physician, a nurse practitioner, 

21 clinical nurse specialist, or physician as22 sistant (as those terms are defined in sec23 tion 1861(aa)(5)), or the medical director 

24 (or physician member of the interdiscipli25 nary group described in section 


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1 1861(dd)(2)(B)) of the hospice program 

2 providing (or arranging for) the individ3 ual’s hospice care. 

4 ‘‘(ii) APPLICATION OF LIMITATION ON

5 INPATIENT CARE DAYS.—For purposes of 

6 any limitation on the number of total inpa7 tient care days for which a hospice may re8 ceive payment, hospice care that is pro9 vided in an inpatient setting under this 

10 subparagraph (but would otherwise be pro11 vided in an outpatient setting) shall not 

12 count towards such limitation. 

13 ‘‘(B) HOME-BASED ALTERNATIVE TO INPA14 TIENT RESPITE CARE.— 

15 ‘‘(i) IN GENERAL.—Notwithstanding 

16 section 1861(dd)(1)(G), an individual who 

17 is certified for hospice care and has elected 

18 to receive hospice care may receive short19 term, home-based respite care as an alter20 native to inpatient respite care. 

21 ‘‘(ii) LIMITATIONS.—The home-based 

22 respite care described in clause (i) is sub23 ject to the same limitations that apply to 

24 inpatient respite care under section 

25 1861(dd)(1)(G), including the limitation 


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1 that respite care may be provided only on 

2 an intermittent, non-routine, and occa3 sional basis and may not be provided con4 secutively over longer than 5 days. 

5 ‘‘(9) DEFINITIONS.—In this subsection: 

6 ‘‘(A) LEAD ORGANIZATION.—The term 

7 ‘Lead Organization’ means a covered entity for 

8 purposes of compliance with the regulations 

9 promulgated under section 264(c) of the Health 

10 Insurance Portability and Accountability Act of 

11 1996 (42 U.S.C. 1320d–2 note) that will con12 vene community partners to coordinate, man13 age, and expand services for the target popu14 lation or populations and be accountable for 

15 costs and quality outcomes under the coopera16 tive agreement. 

17 ‘‘(B) COOPERATIVE AGREEMENT.—The 

18 term ‘cooperative agreement’ means an agree19 ment between the Secretary and an eligible en20 tity under this subsection. 

21 ‘‘(C) PHYSICIAN.—The term ‘physician’ 

22 has the meaning given such term in section 

23 1861(r)(1). 


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1 ‘‘(D) PRACTITIONER.—The term ‘practi2 tioner’ has the meaning given such term in sec3 tion 1842(b)(18)(C). 

4 ‘‘(E) PROVIDER OF SERVICES.—The term 

5 ‘provider of services’ has the meaning given 

6 such term in section 1861(u). 

7 ‘‘(F) TARGET POPULATION.—The term 

8 ‘target population’ means individuals who— 

9 ‘‘(i) are enrolled for benefits under 

10 parts A and B of title XVIII, enrolled in 

11 a Medicare Advantage plan under part C 

12 of such title, enrolled under a State Med13 icaid plan, or dually eligible for benefits 

14 under titles XVIII and XIX; 

15 ‘‘(ii) have one or more advanced 

16 chronic conditions, as determined by the 

17 Secretary, such as late-stage cancer, con18 gestive heart failure, chronic kidney dis19 ease, chronic obstructive pulmonary dis20 ease, geriatric frailty, Alzheimer’s disease, 

21 or other forms of progressive dementia; 

22 and 

23 ‘‘(iii) have demonstrated— 

24 ‘‘(I) evidence of recent and pro25 gressive cognitive impairment; or 


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1 ‘‘(II) a functional limitation re2 quiring the assistance of another per3 son (such as an inability to perform 

4 two or more activities of daily liv5 ing).’’. 

6 (b) AVAILABILITY OF FUNDING.—Section 

7 1115A(f)(2) of the Social Security Act (42 U.S.C. 

8 1315a(f)(2)) is amended— 

9 (1) by striking ‘‘Out of amounts appropriated’’ 

10 and inserting ‘‘(A) Out of amounts appropriated’’; 

11 and 

12 (2) by adding at the end the following new sub13 paragraph: 

14 ‘‘(B) Out of the amount appropriated 

15 under subparagraph (C) of paragraph (1), 

16 $75,000,000 shall be made available for the 

17 purpose of awarding funds under subsection 

18 (h)(4), which shall remain available for such 

19 purpose until expended.’’. 

20 SEC. 3. IDENTIFICATION AND DEVELOPMENT OF QUALITY 

21 MEASURES RELATING TO ADVANCED ILL22 NESS CARE. 

23 Section 1890A of the Social Security Act (42 U.S.C. 

24 1395aaa–1) is amended by adding at the end the following 

25 new subsection: 


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1 ‘‘(h) ADVANCED ILLNESS CARE QUALITY MEAS2 URES.— 

3 ‘‘(1) IN GENERAL.—The Secretary, in consulta4 tion with the Administrator of the Centers for Medi5 care & Medicaid Services, the Director of the Agency 

6 for Healthcare Research and Quality, the Adminis7 trator of the Administration for Community Living, 

8 and the entity with a contract under section 

9 1890(a), shall establish a core set of evidence-based 

10 quality measures relating to advanced illness care. 

11 Such quality measures may include outcome, struc12 tural, and process measures in the following do13 mains: 

14 ‘‘(A) Person and family experience of care. 

15 ‘‘(B) Access to needed services (medical 

16 and supportive), such as home care, palliative 

17 care, and timely referral to hospice. 

18 ‘‘(C) Alignment of care with an individ19 ual’s preferences, goals, and values. 

20 ‘‘(D) Screening and treatment for physical 

21 symptoms, such as dyspnea, nausea, and con22 stipation. 

23 ‘‘(E) Utilization of health care and support 

24 services. 


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1 ‘‘(F) Shared decision making and informed 

2 consent. 

3 ‘‘(2) PROCESS FOR IDENTIFYING AND DEVEL4 OPING QUALITY MEASURES.—In identifying and de5 veloping the quality measures for the core set de6 scribed in paragraph (1), the Secretary shall take 

7 the following actions: 

8 ‘‘(A) IDENTIFY EXISTING MEASURES.— 

9 Identify existing quality measures relating to 

10 advanced illness care that are in use under pub11 lic and privately sponsored health care arrange12 ments. 

13 ‘‘(B) DEVELOPMENT OF MEASURES.— 

14 Enter into grants, contracts, or intergovern15 mental agreements with eligible entities for the 

16 purposes of developing quality measures (which 

17 may include improving existing quality meas18 ures) relating to advanced illness care that, to 

19 the extent practicable, allow for the use of 

20 health information technologies in collecting 

21 data relating to such quality measures. 

22 ‘‘(C) STAKEHOLDER FEEDBACK.—Solicit 

23 feedback from a wide array of stakeholders on 

24 quality measures to include in the core set. 

25 ‘‘(3) PUBLICATION AND UPDATES.— 


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1 ‘‘(A) PUBLICATION.—Not later than Janu2 ary 1, 2022, the Secretary shall publish a core 

3 set of quality measures for advanced illness 

4 care. 

5 ‘‘(B) UPDATES.—Beginning January 1, 

6 2024 (and every 2 years thereafter), the Sec7 retary, in coordination with the entity with a 

8 contract under section 1890(a), shall solicit 

9 stakeholder feedback and publish an updated 

10 set of quality measures, prioritizing measures 

11 that address gap areas related to advanced ill12 ness care. 

13 ‘‘(4) FUNDING.—There are authorized to be ap14 propriated such sums as may be necessary to carry 

15 out this subsection.’’. 

Æ 


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