Translating Rights into Access: Language Access and the Affordable Care Act
Published online by Cambridge University Press: 06 January 2021
More than twenty-four million people in the United States are considered limited English proficient (LEP), and numerous studies have documented the consequences of communication barriers in healthcare. These consequences include: patients’ inability to become engaged and involved in their care; the absence of crucial information—including cultural information—essential to healthcare quality; risks to patient safety arising from the misunderstanding of physician instructions; and ethical and legal lapses stemming from the absence of informed consent. Addressing healthcare rights necessarily entails coming to grips with how to facilitate communication and the exchange of information between the healthcare system and an increasingly diverse patient population.
The history of language access services in healthcare is grounded in two distinct bodies of law: the law of informed consent and civil rights law. Modern notions of informed consent law—which have their roots in the Nuremberg trials of the late 1940s—would recognize a cause of action in tort where a lack of adequate communication creates a barrier to an LEP patient's ability to consent to care. In modern healthcare law, the ability of patients to affirmatively give informed consent to treatment is considered a fundamental element of healthcare quality.
- American Journal of Law & Medicine , Volume 38 , Issue 2-3 , June 2012 , pp. 348 - 373
- Copyright © American Society of Law, Medicine and Ethics and Boston University 2012
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38 See id.
39 WYNIA & MATIASEK, supra note 19, at i.
40 See, e.g., Johnson v. Kokemoor, 545 N.W.2d 495, 507 (Wis. 1996).
41 JOEL B. TEITELBAUM & SARA E. WILENSKY, ESSENTIALS OF HEALTH POLICY AND LAW 154 (Richard Riegelman ed., 2007).
42 RAND E. ROSENBLATT ET AL., LAW AND THE AMERICAN HEALTH CARE SYSTEM 890 (1997).
43 464 F.2d 772 (D.C. Cir. 1972).
44 Id. at 782.
45 ROSENBLATT ET AL., supra note 42, at 901.
46 Policy Guidance on the Prohibition Against National Origin Discrimination as it Affects Persons with Limited English Proficiency, 65 Fed. Reg. 52,762, 52,763 (Aug. 30, 2000) (stating that language assistance will provide better assurances of informed consent and therefore protect physicians from tort liability).
47 Civil Rights Act of 1964, Pub. L. No. 88-352, 78 Stat. 241 (codified as amended in scattered sections of 2 U.S.C., 28 U.S.C., and 42 U.S.C.).
48 42 U.S.C. § 2000d (2006).
49 414 U.S. 563 (1974).
50 Identification of Discrimination and Denial of Services on the Basis of National Origin, 35 Fed. Reg. 11,595, 11,595 (July 18, 1970) (“Where inability to speak and understand the English language excludes national origin-minority group children from effective participation in the educational program offered by a school district, the district must take affirmative steps to rectify the language deficiency in order to open its instructional program to those students.”).
51 See Lau, 414 U.S. at 568.
52 See, e.g., Odima v. Westin Tuscon Hotel Co., 991 F.2d 595, 601 (9th Cir. 1993) (holding that accent and national origin are inextricably intertwined); Garcia v. Gloor, 618 F.2d 264, 270 (5th Cir. 1980) (finding language to be essentially an immutable characteristic like skin color, sex, or place of birth); Sandoval v. Hagan, 7 F. Supp. 2d 1234, 1280 (M.D. Ala. 1998) (relying on the number of cases finding a nexus between language and national origin to strike down an English-only driver's license test law); Asian Am. Bus. Grp. v. City of Pomona, 716 F. Supp. 1328, 1332 (C.D. Cal. 1989) (holding that ordinance restricting the use of foreign languages on business signs overtly discriminates on the basis of national origin).
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58 Susan J. Landers, Doctors Resent Being Forced to Find, Pay for Interpreters, AM. MED. NEWS (Nov. 20, 2000), http://www.ama-assn.org/amednews/2000/11/20/gvsa1120.htm.
59 DAVID BARTON SMITH, HEALTH CARE DIVIDED: RACE AND HEALING A NATION 120 (1999); Rosenbaum, Sara, Reducing Discrimination Affecting Persons with Limited English Proficiency: Federal Civil Rights Guidelines Under Title VI of the 1964 Civil Rights Act, 119 Pub. Health Rep. 93, 93 (2004)CrossRefGoogle ScholarPubMed; see also CIVIL RIGHTS DIV., U.S. DEP't JUSTICE, Title VI Legal Manual (Jan. 11, 2001), http://www.justice.gov/crt/about/cor/coord/vimanual.php.
60 Simkins v. Moses H. Cone Mem’l Hosp., 323 F.2d 959, 960 (4th Cir. 1963).
61 Perez, supra note 55, at 629-30.
62 Physicians whose only source of federal funding derives from participation in the Medicare program, however, have historically been exempted from Title VI enforcement actions because Medicare Part B payments were originally classified as direct assistance to individuals, rather than as federal financial assistance to physicians, SMITH, supra note 59, at 115-28, and Title VI excludes contracts of guarantee or insurance from its definition of federal financial assistance. CIVIL RIGHTS DIV., supra note 59. This interpretive artifact, however, may fall by the wayside in light of statutory language in the ACA. See discussion infra Part IV.A.
63 Exec. Order No. 13,166, 65 Fed. Reg. 50,121 (Aug. 16, 2000), available at http://www.lep.gov/13166/eolep.pdf.
66 Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons, 68 Fed. Reg. 47,311 (Aug. 8, 2003), available at http://www.gpo.gov/fdsys/pkg/FR-2003-08-08/pdf/03-20179.pdf.
67 Id. at 47,314.
68 See id. at 47,319.
69 Id. at 47,314.
70 See DeCola, Alvaro, Making Language Access to Health Care Meaningful: The Need for a Federal Health Care Interpreters’ Statute, 24 J.L. & Health 151, 158 (2011)Google Scholar.
72 532 U.S. 275 (2001).
73 45 C.F.R. § 80.3(b)(2) (2005).
74 Sandoval, 532 U.S. at 293.
75 See id.
76 See Daly, Audrey, How to Speak American: In Search of the Real Meaning of “Meaningful Access” to Government Services for Language Minorities, 110 Penn St. L. Rev. 1005, 1025-44 (2006)Google Scholar.
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79 See Geer, Sarah S., When “Equal” Means “Unequal”—And Other Legal Conundrums for the Deaf Community, in Language And The Law In Deaf Communities 82, 119-20 (Lucas, Ceil ed., 2003)Google Scholar.
80 Rehabilitation Act of 1973, Pub. L. No. 93-112, 87 Stat. 394.
82 See 29 U.S.C. § 794 (2006).
83 Americans with Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 327 (codified as amended in scattered sections of 42 U.S.C. and 47 U.S.C.).
84 42 U.S.C. § 12101(b)(1) (2006).
85 Id. § 12101(a)(3) (emphasis added).
86 See, e.g., Carparts Distribution Ctr., Inc. v. Auto. Wholesaler's Ass’n of New Eng., 37 F.3d 12, 16 (1st Cir. 1994) (finding the proper issue in the case to be “not whether defendants were employers of [plaintiff] within the common sense of the word, but whether they can be considered ‘employers’ for purposes of Title I of the ADA and therefore subject to liability for discriminatorily denying employment benefits to [plaintiff]”).
87 See 42 U.S.C. § 12132. Incidentally, Title IV applies to transportation. See id. § 12184. Title V includes several miscellaneous provisions. See id. §§ 12201-12213.
88 See 42 U.S.C. § 12182(a) (prohibiting discrimination on the basis of disability regarding “any place of public accommodation”). Under the Act, places of public accommodation include the private offices of healthcare providers. See, e.g., Bragdon v. Abbott, 524 U.S. 624, 624-26 (1998) (finding HIV-infected dental patient had a disability under the ADA, but remanding the case to determine if the patient having her cavity filled at the dentist's office, rather than the hospital, would pose a direct threat to the health and safety of others). A series of rulings have concluded, however, that the ADA does not reach the content of private health insurance. See Doe v. Mut. of Omaha Ins. Co., 179 F.3d 557, 564 (7th Cir. 1999) (holding insurance policies that put a cap on medical care benefits for those with HIV did not violate the ADA); see also Parker v. Metro. Life Ins. Co., 121 F.3d 1006, 1008 (6th Cir. 1997) (permitting employer to provide a disability plan that was more favorable to the physically disabled than the mentally disabled).
89 See discussion infra Part IV (discussing reasonable modifications).
90 42 U.S.C. § 12131(2).
91 Disability includes “[a]ny physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: Neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine” and “[a]ny mental or psychological disorder such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.” 28 C.F.R. § 35.104 (2011). “[Included are] contagious and noncontagious diseases and conditions as orthopedic, visual, speech and hearing impairments, cerebral palsy, epilepsy, muscular dystrophy, multiple sclerosis, cancer, heart disease, diabetes, mental retardation, emotional illness, specific learning disabilities, HIV disease (whether symptomatic or asymptomatic), tuberculosis, drug addiction, and alcoholism.” Id.
92 42 U.S.C. § 12102(2). “Major life activities” includes “caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.” 28 C.F.R. § 35.104.
93 See 28 C.F.R. § 35.130(b)(7).
95 Id. § 36.104.
96 CIVIL RIGHTS DIV., U.S. DEP't OF JUSTICE, ADA Business Brief: Communicating with People Who Are Deaf or Hard of Hearing in Hospital Settings, AMERICANS WITH DISABILITIES ACT HOME PAGE, http://www.ada.gov/hospcombr.htm (last updated Aug. 11, 2005).
97 See 42 U.S.C. § 12102(1).
98 28 C.F.R. § 36.303(c) (“A public accommodation shall furnish appropriate auxiliary aids and services where necessary to ensure effective communication with individuals with disabilities.”).
99 See CIVIL RIGHTS DIV., supra note 96.
100 Americans with Disabilities Act—Effective Communication for the Deaf and People Who Are Hard of Hearing, DISABILITY L. CTR., available at http://www.disabilitylawcenter.org/publications/ADA%20Effective%20Communication%20%282%29.pdf (last visited Jan. 13, 2012). In addition, the ADA “established a free nationwide relay network to handle voice-to-TTY [a teleprinter, teletypewriter, or teletype printer] and TTY-to-voice calls. Individuals may use this network to call the hospital from a TTY. The relay consists of an operator with a TTY who receives the call from a TTY user and then places the call to the hospital. The caller types the message into the TTY and the operator relays the message by voice to the hospital staff person, listens to the staff person's response, and types the response back to the caller. The hospital must be prepared to make and receive relay system calls, which may take a little longer than voice calls.” CIVIL RIGHTS DIV., supra note 96.
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103 See id. at 1002 n.14.
104 See Teitelbaum, Joel & Rosenbaum, Sara, Medical Care as a Public Accommodation: Moving the Discussion to Race, 29 Am. J.L. & Med. 381, 389 (2003)Google ScholarPubMed.
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106 See Pub. L. No. 79-725, 60 Stat. 1041 (1946) (codified as amended at 42 U.S.C. §§ 291-291m).
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108 42 C.F.R. § 124.603(a)(1) (2001).
109 U.S. DEP't OF HEALTH & HUMAN SERVS., GUIDE TO PLANNING THE HILL-BURTON COMMUNITY SERVICE COMPLIANCE REVIEW 16, 27 (1981). This view is supported by the federal court case Aghazadeh v. Maine Med. Ctr., No. 98-421-P-C, 1999 WL 33117182 (D. Me. June 8, 1999), in which the court held that the hospital had violated the community assurance requirement of the Hill-Burton Act when it failed to provide interpreters for the plaintiffs who spoke little or no English, thereby excluding a significant portion of people in its territory. Id. at *1, *9.
110 Comments to the regulations define a person “residing” in an area as someone who: “(i) [i]s living in the service area with the intention to remain there permanently or for an indefinite period; (ii) [i]s living in the service area for purposes of employment; or (iii) [i]s living with a family member who resides in the service area.” 42 C.F.R. § 124.603(a)(2).
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112 See, e.g., Loue, Sana, Access to Health Care and the Undocumented Alien, 13 J. Legal Med. 271, 282 (1992)CrossRefGoogle ScholarPubMed; McKeefery, Michael J., A Call to Move Forward: Pushing Past the Unworkable Standard that Governs Undocumented Immigrants’ Access to Health Care Under Medicaid, 10 J. Health Care L. & Pol’Y 391, 397 (2007)Google Scholar; Reich, Peter L., Public Benefits for Undocumented Aliens: State Law Into the Breach Once More, 21 N.M. L. Rev. 219, 233 n.88 (1991)Google Scholar.
113 Examination and Treatment for Emergency Medical Conditions and Women in Labor Act, 42 U.S.C. § 1395dd (2006).
115 CTRS. FOR MEDICARE & MEDICAID SERVS., STATE OPERATIONS MANUAL: APPENDIX V – INTERPRETIVE GUIDELINES – RESPONSIBILITIES OF MEDICARE PARTICIPATING HOSPITALS IN EMERGENCY CASES (2010), available at https://www.cms.gov/manuals/Downloads/som107ap_v_emerg.pdf; see also 42 C.F.R. § 489.20(q) (2012) (requiring hospitals to conspicuously place signs regarding patients’ rights under EMTALA).
116 Perkins, Jane, Overcoming Language Barriers to Health Care, 65 Popular Gov'T 38, 42 (1999)Google Scholar.
117 See, e.g., Brooks v. Md. Gen. Hosp., Inc., 996 F.2d 708, 711 (4th Cir. 1993) (citing Baber v. Hosp. Corp. of Am., 977 F.2d 872, 880 (4th Cir. 1992)); see also Gatewood v. Wash. Healthcare Corp., 993 F.2d 1037, 1039 (D.C. Cir. 1991); Cleland v. Bronson Health Care Grp., Inc., 917 F.2d 266, 272 (6th Cir. 1990).
118 See 45 C.F.R. § 80.3 (2005).
119 U.S. DEP't OF HEALTH & HUMAN SERVS., Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons, http://www.hhs.gov/ocr/civilrights/resources/laws/revisedlep.html (last visited Dec. 8, 2011).
120 42 C.F.R. § 435.905(b) (1980).
121 Siemion v. Dep't of Pub. Aid, 522 N.E.2d 627, 633 (Ill. App. 1988).
122 CTRS. FOR MEDICARE & MEDICAID SERVS., STATE MEDICAID MANUAL: EARLY AND PERIODIC SCREENING DIAGNOSTIC AND TREATMENT SERVICES § 5121A, available at https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Paper-Based-Manuals-Items/CMS021927.html.
123 CTRS. FOR MEDICARE & MEDICAID SERVS., STATE MEDICAID MANUAL: STATE ORGANIZATION AND GENERAL ADMINISTRATION §§ 2900.4, 2902.9, available at https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Paper-Based-Manuals-Items/CMS021927.html.
124 Hm Chen, Alice et al., The Legal Framework for Language Access in Healthcare Settings: Title VI and Beyond, 22 J. Gen. Internal Med. 362, 365 (Supp. 2 2007)Google Scholar.
125 Letter from Tim Westmoreland, Dir., Ctrs. for Medicaid & State Operations, on Policy Guidance on Medicaid for Persons with Limited English Proficiency to State Medicaid Dirs. (Aug. 31, 2000), available at http://www.cms.hhs.gov/smdl/downloads/smd083100.pdf.
126 Health Insurance Portability and Accountability Act (HIPAA) of 1996, Pub. L. No. 104-191, 110 Stat. 1936.
127 45 C.F.R. §160.103 (2012).
128 Patient Protection and Affordable Care Act, Pub. L. No. 11-148 § 1311(g), 124 Stat. 119 (2010).
129 Id. § 4302.
130 Id. § 1311(i).
131 Id. §§ 5313, 5405.
132 Id. § 5307.
133 NAT’L ASS’N OF CMTY. HEALTH CTRS., SERVING PATIENTS WITH LIMITED ENGLISH PROFICIENCY: RESULTS OF A COMMUNITY HEALTH CENTER SURVEY 3 (2008), available at http://www.nachc.com/client/documents/LEP_report.pdf.
134 Education Amendments of 1972, 20 U.S.C. §§ 1681-1688.
135 Age Discrimination Act of 1975, 42 U.S.C. §§ 6101-6107.
136 Patient Protection and Affordable Care Act § 1557(a).
137 Civil Rights Act of 1964, 42 U.S.C. § 2000d-4 (2006).
138 See, e.g., United States v. Baylor Univ. Med. Ctr., 736 F.2d 1039, 1039 (5th Cir. 1984).
139 Bob Jones Univ. v. Johnson, 396 F. Supp. 597, 602-03 (D.S.C. 1974), aff’d, 529 F.2d 514 (4th Cir. 1975).
140 Patient Protection and Affordable Care Act; Establishment of Exchanges and Qualified Health Plans, 76 Fed. Reg. 41,866 (proposed July 15, 2011) (to be codified at 45 C.F.R. pts. 155-56), available at http://www.gpo.gov/fdsys/pkg/FR-2011-07-15/pdf/2011-17610.pdf.
141 76 Fed. Reg. 41,589, 41,912 (proposed July 15, 2011) (to be codified at 45 C.F.R. § 155.20).
142 76 Fed. Reg. at 41,916 (to be codified at 42 C.F.R. § 155.230).
143 Id. (to be codified at 42 C.F.R. § 155.210).
144 Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons, 67 Fed. Reg. 41,455 (June 18, 2002), available at http://www.justice.gov/crt/about/cor/lep/DOJFinLEPFRJun182002.php.
145 Public Health Service Act § 3101(a)(1), 42 U.S.C.A. § 300kk (West 2012) (as added by Patient Protection and Affordable Care Act, Pub. L. No. 111-148, § 4302(a), 124 Stat. 119 (2010)) (stating that “[t]he Secretary shall ensure that, by not later than 2 years after March 23, 2010, any federally conducted or supported health care or public health program, activity or survey (including Current Population Surveys and American Community Surveys conducted by the Bureau of Labor Statistics and the Bureau of the Census) collects and reports, to the extent practicable (A) data on race, ethnicity, sex, primary language, and disability status for applicants, recipients, or participants; (B) data at the smallest geographic level such as State, local, or institutional levels if such data can be aggregated; (C) sufficient data to generate statistically reliable estimates by racial, ethnic, sex, primary language, and disability status subgroups for applicants, recipients or participants using, if needed, statistical oversamples of these subpopulations; and (D) any other demographic data as deemed appropriate by the Secretary regarding health disparities”).
146 Such credits are classified as federal financial assistance under ACA section 1557. The Secretary of HHS has not yet clarified how this classification of advance tax credits might relate to the data collection provisions.
147 Public Health Service Act § 3101(a)(2).
148 Id. § 3101(a)(3).
149 Id. § 3101(b)(1), (c)(3).
150 Id. § 3101(e)(1).
151 See, e.g., ROBERT WOOD JOHNSON FOUND., EXPECTING SUCCESS: EXCELLENCE IN CARDIAC CARE, NATIONAL PROGRAM REPORT 23 (2011), available at http://www.rwjf.org/files/research/PDI.final.pdf.
152 Public Health Service Act § 3101(h) (“Notwithstanding any other provision of this section, data may not be collected under this section unless funds are directly appropriated for such purpose in an appropriations Act.”).
153 Consolidated Appropriations Act, 2012. Pub. L. No. 112-74, 125 Stat. 786 (2011).
154 America Recovery and Reinvestment Act of 2009, § 3000(13), 42 U.S.C.A. § 300jj (West 2012).
155 Mary Mosquera, Providers Strongly Commit to Signing Up for EHR Incentive Program, GOV't HEALTH IT (Jan. 13, 2011), http://www.govhealthit.com/news/providers-strongly-commitsigning-ehr-incentive-program.
156 See, e.g., HIT Policy Committee, Meaningful Use Workgroup Request for Comments Regarding Meaningful Use Stage 2, U.S. DEP't OF HEALTH & HUMAN SERVS. (Jan. 12, 2011), available at http://healthit.hhs.gov/media/faca/MU_RFC%20_2011-01-12_final.pdf.
157 See COMM. ON QUALITY OF HEALTH CARE IN AM., supra note 18, at 8.
158 For more detail on Medicare-specific programs, see Jane Hyatt Thorpe & Chris Weiser, Medicare Quality Measurement and Reporting Programs, HEALTHREFORMGPS (Feb. 9, 2011), available at http://www.healthreformgps.org/resources/medicare-quality-measurement-and-reportingprograms/; Center for Medicare and Medicaid Innovation, HEALTHREFORMGPS (May 13, 2010), available at http://www.healthreformgps.org/resources/center-for-medicare-and-medicaid-innovation/.
159 Public Health Service Act § 399HH, 42 U.S.C.A. § 280j (West 2012) (as amended by Patient Protection and Affordable Care Act, Pub. L. No. 111-148, § 3011, 124 Stat. 119 (2010)).
160 Public Health Service Act § 931, 42 U.S.C.A. § 299c (as amended by Patient Protection and Affordable Care Act § 3013(a)).
161 U.S. DEP't OF HEALTH & HUMAN SERVS., Report to Congress: National Strategy for Quality Improvement in Health Care (2011), available at http://www.healthcare.gov/law/resources/reports/quality03212011a.html.
162 Principles for the National Quality Strategy, AGENCY FOR HEALTHCARE RESEARCH & QUALITY, http://www.ahrq.gov/workingforquality/nqs/principles.htm (last visited Mar. 3, 2012).
163 Patient Protection and Affordable Care Act § 1311(g).
164 Id. § 1311(g)(1)(E).
165 Social Security Act § 1899(a)(2)(A), 42 U.S.C.A. § 1395jjj(b)(2)(A) (West 2010) (as amended by Patient Protection and Affordable Care Act § 3022).
166 Medicare Program; Medicare Shared Savings Program: Accountable Care Organizations, 76 Fed. Reg. 67,802 (Nov. 2, 2011), available at http://www.gpo.gov/fdsys/pkg/FR-2011-11-02/pdf/2011-27461.pdf.
167 76 Fed. Reg. at 67,828-29.
168 Patient Protection and Affordable Care Act § 1311(i).
169 Patient Protection and Affordable Care Act; Establishment of Exchanges and Qualified Health Plans, 76 Fed. Reg. 41,866 (proposed July 15, 2011).
170 Id. at 41,915 (to be codified at 42 C.F.R. § 155.210).
171 Patient Protection and Affordable Care Act § 5002(a)(15).
172 Id. §§ 5301, 5303.
173 Id. § 5306.
174 Id. § 5507.
175 Id. § 5203.
176 Public Health Service Act § 399V(k), 42 U.S.C.A. § 280g-11(k) (West 2012) (as amended by Patient Protection and Affordable Care Act § 5313(a)).
177 NAT’L ASS’N OF COM’TY HEALTH CTRS., EXPANDING HEALTH CENTERS UNDER HEALTH CARE REFORM: DOUBLING PATIENT CAPACITY AND BRINGING DOWN COSTS (2010), available at http://www.nachc.com/client/HCR_New_Patients_Final.pdf.
178 Serving Patients with Limited English Proficiency: Results of a Community Health Center Survey, supra note 133.
179 See LEIGHTON KU ET AL., TRANSFORMING COMMUNITY HEALTH CENTERS INTO PATIENTCENTERED MEDICAL HOMES: THE ROLE OF PAYMENT REFORM 2 (2011), available at http://www.commonwealthfund.org/∼/media/Files/Publications/Fund%20Report/2011/Sep/1548_Ku_transforming_community_hlt_ctrs_PCMHs_final.pdf.