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[1]. Centers for Medicare and Medicaid Services, Application for a Section 1915(c) Home and Community-Based Waiver [Version 3.5]: Instructions, Technical Guide and Review Criteria (Baltimore: CMS, January 2008), p. 176.

[2]. O’Keeffe, J., S. Crisp, P. Doty, S. Flanagan, G. Smith, et al., Developing and Implementing Self-Direction Programs and Policies: A Handbook, National Resource Center on Participant-Directed Services, May 2010, pp. 5-1 and 5-2.

[3]. Ibid.

[4]. Moseley, C., Having It Your Way: Understanding State Individual Budgeting Strategies (Alexandria, VA: National Association of State Directors of Developmental Disabilities Services, 2003).

[5]. Ibid.; O’Keeffe et al, 2010.

[6]. Kimmich, M., J. Agosta, J. Fortune, D. Smith, K. Melda, K. Auerbach, and S. Taub, Developing Individual Budgets and Reimbursement Levels Using the Supports Intensity Scale, prepared by the Human Services Research Institute for the Independent Living Research Utilization Program, April 2009.

[7]. CMS, January 2008, p. 118–120.

[8]. California In-Home Supportive Services Consumer Alliance, "The History of In-Home Support Services and Public Authorities in California"

[9]. California Department of Social Services, "In Home Supportive Services (IHSS): Paid Cases – July 2006-May 2012"

[10]. Robert Wood Johnson Foundation (RWJF), "Independent Choices: Enhancing Consumer Direction for People with Disabilities – An RWJF National Program," National Program Results Report, June 22, 2004

[11]. RWJF, "Self-Determination for Persons with Developmental Disabilities: An RWJF National Program," Program Results Report, January 20, 2004; updated October 25, 2007

[12]. Smith, G., and R. M. Gettings, The HCB Waiver and CSLA Programs: An Update on Medicaid’s Role in Supporting People with Developmental Disabilities in the Community (Alexandria, VA: National Association of State Directors of Developmental Disabilities Services, Inc., October 1994).

[13]. Mathematica Policy Research, Choosing Independence: An Overview of the Cash & Counseling Model of Self-Directed Personal Assistance Services (Princeton, NJ: RWJF, 2006).

[14]. For details on this program, see

[15]. Section 1905(a)(24) of the Social Security Act, as added by Section 13601(a)(5) of the Omnibus Budget Reconciliation Act of 1993 (P.L. 103-66). Prior to the passage of P.L. 103-66, the provision of personal care services was authorized under the general statutory authority granted to the Secretary of HHS to administratively recognize other types of Medicaid-reimbursable services.

[16]. Federal Register, Vol. 62, No. 176 (September 11, 1997), pp. 47896–47903.

[17]. CMS, State Medicaid Manual, Section 4480.

[18]. Eiken, S., K. Sredl, B. Burwell, and L. Gold, "Medicaid Expenditures for Long-Term Services and Support: 2011 Update," Thomson Reuters (October 31, 2011).

[19]. CMS, "Independence Plus: A Demonstration Program for Family and Individual Directed Community Services Waiver, Section 1915(c) of the Social Security Act," as transmitted by State Medicaid Directors Letter #02-009 (May 9, 2002).

[20]. Ibid.

[21]. CMS, Application for Section 1915(c) Home and Community-Based Waiver (Version 3.5): Instructions, Technical Guide and Review Criteria, Appendix D, Participant-Centered Planning and Service Delivery, and Appendix E, Participant Direction of Services, Ibid., pp. 178–218.

[22]. Ibid., Appendix E, pp. 190–191.

[23]. Kaiser Commission on Medicaid and the Uninsured (KCMU), "Medicaid Home and Community-Based Service Program: Data Update" (Washington, DC: KCMU, February 2011).

[24]. Adapted from information on Web site at

[25]. U.S. Government Accountability Office (GAO), Medicaid: States’ Plans to Pursue New and Revised Options for Home and Community-Based Services, GAO-12-649 (Washington, DC: GAO, June 2012).

[26]. Federal Medicaid law prohibits payments for inpatient care in "institutions for mental diseases" and consequently people with psychiatric disabilities living in the community are not eligible to receive home and community-based waiver services because, in the absence of such services, they would not be in need of Medicaid-reimbursable institutional services, as required under Section 1915(c) of the Social Security Act.

[27]. CMS, State Medicaid Directors’ Letter No. 10-013, Subject: "Improving Access to Home and Community-Based Services," Center for Medicaid, CHIP and Survey and Certification (August 6, 2010).

[28]. Federal Register, Vol. 77, No. 88 (May 7, 2012).

[29]. Barth, S.M., and A. Lind, "Balancing Incentive Program: Strengthening Medicaid Community-Based Long-Term Services and Supports," Technical Assistance Brief (Princeton, NJ: Center for Health Care Strategies, Inc., September 2012).

[30]. Federal Register, Vol. 73, No. 193 (October 3, 2008), p. 57853.

[31]. Federal Register, Vol. 77, No. 86, (May 3, 2012), pp. 26361–26406, 26827–26903.

[32]. Adapted from information on the Web site at

[33]. Ibid., Section 1915(c) HCBS Waiver Technical Guide, p. 176.

[34]. Moseley, C., "Balancing Safety and Freedom in Consumer-Directed Systems of Support" (Durham, NH: University of New Hampshire, National Program Office on Self-Determination, Institute on Disability, June 2001).

[35]. Ibid., p. 21.

[36]. Head, M., and J. Conroy, "Outcomes of Self-Determination in Michigan: Quality and Costs," in R. Stancliffe and K.C. Lakin (eds.), Costs and Outcomes of Community Services for People with Intellectual Disabilities (Baltimore, MD: Paul Brookes Publishing Co., 2005), pp. 219–240.

[37]. Brown, R., B. L. Carlson, S. Dale, L. Foster, B. Phillips, and J. Schore, Cash & Counseling: Improving the Lives of Medicaid Beneficiaries Who Need Personal Care or Home and Community-Based Services, (Princeton, NJ: Mathematica Policy Research, August 2007), pp. 54–71.

[38]. Doty, P., K. Mahoney, and M. Sciegaj, "New State Strategies to Meet Long-Term Care Needs," Health Affairs, Vol. 29, No. 1 (2010), pp. 49-56.

[39]. Walker, P., "Implementation of Consumer-Directed Services for Persons with Intellectual or Developmental Disabilities: A National Study," Policy Research Brief, Vol. 20, No. 1 (Minneapolis: Research and Training Center on Community of Living, Institute on Community Integration, University of Minnesota, January 2009).

[40]. Ibid., pp. 6–9.

[41]. Saucier, P., J. Kasten, B. Burwell, and L. Gold, "The Growth of Managed Long-Term Services and Supports (MLTSS) Programs: A 2012 Update," Truven Health Analytics for CMS (July 2012), pp. 6–24.

[42]. Congressional Budget Office (CBO), An Update to the Budget and Economic Outlook: Fiscal Years 2012 to 2022 (Washington, DC: CBO, August 2012), pp. 15, 56.

[43]. Adapted from information appearing on the Wisconsin Department of Health Services IRIS Web site,

[44]. Wisconsin Department of Health Services, "2011–2013: Long Term Care Sustainability – IRIS and Self-Directed Supports" (January 9, 2012),

[45]. Wisconsin Legislative Audit Bureau, Family Care: An Evaluation, Report No. 11-5 (April 2011),

[46]. Wisconsin Department of Health Services, "Wisconsin’s Family Care Program – Lifting the Temporary Caps and Putting the Program on the Path to Long Term Sustainability" (April 17, 2012),

[47]. Wisconsin Department of Health Services, "Long Term Sustainability – IRIS and Self-Directed Supports."

[48]. Bogart, V. J., "Consumer Directed Assistance Program Offers Greater Autonomy to Recipients of Home Care,"Journal of the New York State Bar Association, Vol. 75, No. 1 (January 2003), pp.  8–9.

[49]. Testimony by Jason A. Helgerson, Medicaid Director, New York State Department of Health, before the Aging Committee, U.S. Senate, July 18, 2012.

[50]. Letter from Valarie J. Bogart, Selfhelp Community Services, Inc., to Jason Helgerson, Director of the Medicaid Program, New York State Department of Health Services (May 2, 2011); letter from The Legal Aid Society, the New York Lawyers for the Public Interest and the Benjamin N. Cardozo School of Law to Victoria Wachino, Director of Family and Children’s Health Program Group, CMS (December 27, 2011).

[51]. Individuals enrolled in the Assisted Living Program, Nursing Home Transition and Diversion waiver, as well as the Traumatic Brain Injury waiver, also are exempted from mandatory enrollment in MLTC plans.

[52]. New York State Department of Health, New York Medicaid Redesign Team (MRT) Waiver Amendment: Achieving the Triple Aim, a proposal to CMS on August 6, 2012.

[53]. Office of People with Developmental Disabilities, People First Demonstration Waiver: New York’s Response to Centers for Medicare and Medicaid Services’ Request for Additional Information, April 2012.

[54]. "2011 Annual Report of the National Resource Center for Participant-Directed Services" (Chestnut Hill, MA: Boston College, 2011).

[55]. Note that the denominator in this comparison is based on the total number of people with functional disabilities as reported in the 2009 American Community Survey, a considerably larger number than those who qualify for Medicaid benefits on the basis of disability.

[56]. Reinhard, S., E. Kassner, A. Houser, and R. Mollica, Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Disabilities, and Family Caregivers, AARP and The Scan Foundation (September 2011).

[57]. When an individual chooses an organization—often a traditional community provider agency—to serve as co-employer of his/her personal care worker, the arrangement is referred to as an Agency with Choice model (i.e., the individual and the selected organization share responsibility for hiring, training, supervising, and dismissing personal support workers, with the organization handling payroll and other administrative tasks on the individual’s behalf).

[58]. Application for Section 1915(c) Home and Community-Based Waiver (Version 3.5): Instructions, Technical Guide and Review Criteria, Ibid., p. 213.

[59]. Ibid., p. 214.

[60]. National Resource Center for Participant-Directed Services, "Guiding Principles: For Partnerships with Unions and Emerging Worker Organizations When Individuals Direct Their Own Services and Supports" (Chestnut Hill, MA: Boston College, November 26, 2011)

[61]. Information obtained from the Web site of the Oregon Home Care Commission,

[62]. Ibid.

[63]. Information obtained from the Web site of SEIU Local 503,

[64]. Oregon Administrative Code, Department of Human Services, Seniors and People with Disabilities Division, Division 31, Section 411 (Homecare Workers Enrolled in the Client-Employed Provider Program).

[65]. SEIU Web site, Ibid.

[66]. Mission Analytics Group in collaboration with the Human Services Research Institute and Acumen LLP, The Balanced Incentive Program: Implementation Manual prepared under contract with CMS (October 2011), pp. 27–29

[67]. Ibid., O’Keeffe et al., p. 8-7.

[68]. States may request authority to make cash payments under a Section 1115 waiver/demonstration program. In addition, states may elect to cash out benefits to self-directing individuals under an optional Section 1915(j) state plan program for furnishing PAS. However, the cash assistance option is rarely used in Medicaid-funded self-direction programs, primarily because very few participants are willing to assume the complex financial management tasks involved.

[69]. Ibid., O’Keeffe et al., pp. 7.3–7.5.