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¹ O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518). P. 3

² Finding added and not part of main body of research. Government Accountability Office. (June 2005). Federal Disability Assistance: Wide Array of Programs Needs To Be Examined in Light of 21st Century Challenges. Washington, DC: GAO (GAO-05-626). P. 5.

³ Medicaid Reform A Preliminary Report from the National Governors Association. June 15, 2005.

⁴ Finding added and not part of main body of research. Refers to Office of Management and Budget Circular A-87 that establishes cost principles for federal grants to state governments. April 2005. Department of Health and Human Services: Office of the Inspector General. Review of the Oklahoma Department of Human Services’ Medicaid Administrative Costs. A-06-03-00046.

⁵ Language added to U.S. Senate Bill, 109th Congress—S.B. 705 to include people with disabilities: Establish an Interagency Council on Meeting the Housing and Service Needs of Seniors, April 5, 2005, to include people with disabilities.

⁶ Checkland, P.B. (1999). Soft Systems Methodology: A 30- Year Retrospective. Toronto: John Wiley & Son, Ltd.

⁷ Checkland, P.B. (1981). Systems Thinking, Systems Practice. Toronto: John Wiley & Sons, Ltd.

⁸ Ausubel, D.P. (2000). The Acquisition and Retention of Knowledge: A Cognitive View. Dordrecht, Netherlands: Kluwer Academic Publishers.

⁹ Senge, P., Kleiner, A., Roberts, C., Ross, R., & Smith, B. (1994). The Fifth Discipline Fieldbook: Strategies and Tools for Building a Learning Organization. New York: Doubleday.

¹⁰ Lakdawalla, D., Bhattacharya, J., & Goldman, D. (2001). Are the Young Becoming More Disabled? National Bureau of Economic Research.

¹¹ O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518). P. 3.

¹² Longman, P. (2004). The Empty Cradle: How Falling Birthrates Threaten World Prosperity and What to Do About It. New America Book published by Basic Books: New York. P. 154.

¹³ Walker, D. (2004). The National Growing Fiscal Imbalance. Comptroller General of the United States, U.S. Government Accountability Office.

¹⁴ Congressional Budget Office. (April 2004). Financing Long-Term Care for the Elderly. The U.S. Congress.

¹⁵ National Endowment for Financial Education. (2002). Long-Term Care: Our Next National Crisis? A Meeting Sponsored by the National Endowment for Financial Education, Scottsdale, Arizona, May 6–8, 2001.

¹⁶ Ibid.

¹⁷ American Association of Homes and Services for the Aging. (October 18, 2002). Public Policy: Issue Updates. (Contact Lousie Maus, AAHS Public Policy Associate at Lmaus@aahsa.org for a copy.) Washington, DC: American Association of Homes and Services for the Aging.

¹⁸ Ibid.

¹⁹ National Governors Association. (August 13, 2004). A Lifetime of Health and Dignity: Confronting Long-Term Care Challenges in America. P. 3. www.subnet.nga.org.ci.2-financial.hgtml.

²⁰ McCall, N., Korb, J. (2001). Chapter 8: What Have We Learned from the Partnership for Long-Term Care? In Ed. McCall, Who Will Pay for Long-Term Care: Insights from the Partnership Programs. Chicago: Health Administration Press.

²¹ Ibid., 178

²² A Profile of Older Americans: 2000. Administration on Aging, U.S. Department of Health and Human Services. P. 9.

²³ Ibid., 4.

²⁴ Ibid.

²⁵ American’s Health Insurance Plans: 2004. Post-Election Survey Regarding Health Care Issues: Ayres, McHenry & Associates, Inc. Pp. 1–2.

²⁶ Durenberger, D. (2003). Long-Term Care Policy in the New Reality. In Eds. Blumental, Moon, Washawsky, & Boccuti, Long-Term Care and Medicare Policy – Can We Improve the Continuity of Care? National Academy of Social Insurance. Brookings Institution Press. Pp. 120–128.

²⁷ Ibid., 2. Quoting Kaiser Commission on Medicaid and the Uninsured, January 2003.

²⁸ Ibid., 2.

²⁹ Durenberger, D. (2003). Long-Term Care Policy in the New Reality. In Eds. Blumental, Moon, Washawsky, & Boccuti, Long-Term Care and Medicare Policy – Can We Improve the Continuity of Care? National Academy of Social Insurance. Brookings Institution Press. Pp. 120–126.

³⁰ Press Release, January 11, 2005. Governor Bush announces plan to transform Medicaid: Proposals to put patients first. Empowered care – putting patients first. www.empoweredcare.com/press01112005.aspx

³¹ Stone, R. (2003). Reality of Caring for the Long-Term Care Population. In Eds. Blumental, Moon, Washawsky, & Boccuti, Long-Term Care and Medicare Policy – Can We Improve the Continuity of Care? National Academy of Social Insurance. Brookings Institution Press. Pp. 40–47.

³² Silberner, J. (2003). Comment on Part Three: Prospects for Long-Term Care Policymaking at State and Federal Levels. In Eds. Blumental, Moon, Washawsky, & Boccuti, Long-Term Care and Medicare Policy – Can We Improve the Continuity of Care? National Academy of Social Insurance. Brookings Institution Press. Pp. 127–128.

³³ Velgouse L., & Dworken, M. (2002). Olmstead Update. An Update on Activities Related the Olmstead Decision: Olmstead State Plans Real Systems Change Grants. New Freedom Initiative: AAHSA Collaborations and Activities.

³⁴ National Council on Disability. (August 19, 2003). Olmstead: Reclaiming Institutionalized Lives. Washington, DC.

³⁵ Hudson, R.B. (1997). The Future of Age-Based Public Policy. Baltimore and London: The Johns Hopkins University Press.

³⁶ Kane, R. (2001). Long-Term Care and a Good Quality of Life: Bringing Them Closer Together. The Gerontologist, 41(3): 293–304. Stanford, CA: Stanford University.

³⁷ Kane, R.A., & Kane, R. L. (1987). Long-Term Care: Principles, Programs, and Policies. New York: Springer Publishing Company.

³⁸ Mahoney, K.J., & Simon-Rusinowitz, L. (1997). Cash and Counseling Demonstration and Evaluation: Start-Up Activities. Journal of Case Management, 6: 25–31.

³⁹ Kane, R. (2001). Long-Term Care and a Good Quality of Life: Bringing Them Closer Together. The Gerontologist, 41, 3, 293–304. Stanford, CA: Stanford University.

⁴⁰ Nerney, T., & Shumaway, D. (1996). Beyond Managed Care: Self-determination for People with Disabilities. Concord, NH: Institute on Disability, University of New Hampshire.

⁴¹ Assisted Living Workgroup. (April 2003). Assuring Quality in Assisted Living: Guidelines for Federal and State Policy, State Regulation, and Operations. Report to the U.S. Senate Special Committee on Aging, Washington, DC.

⁴² Longman, P. (2004). The Empty Cradle. How Falling Birthrates Threaten World Prosperity and What to Do About It. New York: Basic Books.

⁴³ Jonas, S., & Kovner, A.R. (2003). Health Care Delivery in the United States. Seventh Edition. New York: Springer Publishing Company. P. 461.

⁴⁴ Ibid., 135.

⁴⁵ Ibid.

⁴⁶ Longman, P. (1996). The Return of Thrift: How the Coming Collapse of the Middle-Class Welfare State Will Reawaken Value in America. New York: The Free Press.

⁴⁷ Rosner, D. (1982). Health Care for the “Truly Needy”: Nineteenth-Century Origins of the Concept. Milbank Memorial Fund Quarterly: Health and Society, 60(Summer): 355.

⁴⁸ Jonas, S., & Kovner, A.R. (2003). Health Care Delivery in the United States. Seventh Edition. New York: Springer Publishing Company. Pp. 124–125.

⁴⁹ Lundberg, G.D. (2002). Severed Trust. Why American Medicine Hasn’t Been Fixed. New York: Basic Books. P. 57.

⁵⁰ Young, I.M. (1990). Justice and the Politics of Difference. New Jersey: Princeton University Press.

⁵¹ Hartnett, J.T. (1999). Toward a Philosophy of Difference: An Analysis of Vermont’s Obligations to Establish Entitlement for Adults with Developmental Disabilities. University of Vermont.

⁵² Ibid.

⁵³ Young, I.M. (1990). Justice and the Politics of Difference. New Jersey: Princeton University Press. P. 6.

⁵⁴ Bringewatt, R. (2003). Long-Term Care and Medicare Policy: Can We Improve the Continuity of Care? Eds. Blumental, Moon, Warshawsky, & Boccuti. Comment Paper on How Might We Meet Tomorrow’s Needs for Chronic and Long-Term Care? Pp. 232–235.

⁵⁵ Consortium of Citizens with Disabilities. (March 10, 2004). Letter to U.S. Senators. www.c-cd. org/2005Medicaid.htm.

⁵⁶ Buhler-Wilkerson, K. (2003). No Place Like Home: A History of Nursing and Home Care in the United States. Baltimore: John Hopkins University Press.

⁵⁷ Gray, P. (1969). The Enlightenment. New York: W.W. Norton & Company.

⁵⁸ Ibid., 33.

⁵⁹ Starr, P. (1982). The Social Transformation of American Medicine. New York: Basic Books.

⁶⁰ Hartnett, J.T. (1992). The Funeral an Endangered Tradition: Making Sense of the Final Farewell. Vermont: Good Mourning Press.

⁶¹ Buhler-Wilkerson, K. (2003). No Place Like Home: A History of Nursing and Home Care in the United States. Baltimore: John Hopkins University Press.

⁶² Jonas, S., & Kovner, A.R. (2003). Health Care Delivery in the United States. Seventh Edition. New York: Springer Publishing Company. P. 147.

⁶³ Aries, P. (1975). Western Attitudes toward Death. Baltimore: John Hopkins University Press.

⁶⁴ Nord, W.A. (1995). Religion and American Education. Rethinking a National Dilemma. Chapel Hill & London: The University of North Carolina Press.

⁶⁵ Jonas, S., & Kovner, A.R. (2003). Health Care Delivery in the United States. Seventh Edition. New York: Springer Publishing Company. Pp. 246–252.

⁶⁶ DeSpelder, L.A., & Strickland, A.L. (1997). The Last Dance. Mountain View, CA: Mansfield Publishing Company.

⁶⁷ Jonas, S., & Kovner, A.R. (2003). Health Care Delivery in the United States. Seventh Edition.New York: Springer Publishing Company.

⁶⁸ D’Agostino, L. (1948). The History of Public Welfare in Vermont. Winooski, VT: St.Michael’s College Press.

⁶⁹ Stone, D. (1983). The Disabled State. Philadelphia: Temple University Press.

⁷⁰ Carlisle, L.B. (1965). Mental Retardation in Vermont, A Chronology of Changing Attitudes.Vermont Mental Retardation Planning Report, Pavilion Hotel: Montpelier, VT.

⁷¹ D’Agostino, L. (1948). The History of Public Welfare in Vermont. Winooski, VT: St.Michael’s College Press.

⁷² Jonas, S., & Kovner, A.R. (2003). Health Care Delivery in the United States. Seventh Edition.New York: Springer Publishing Company.

⁷³ Ibid.

⁷⁴ Buhler-Wilkerson, K. (2003). No Place Like Home: A History of Nursing and Home Care in the United States. Baltimore: John Hopkins University Press.

⁷⁵ Jonas, S., & Kovner, A.R. (2003). Health Care Delivery in the United States. Seventh Edition.New York: Springer Publishing Company. P. 252.

⁷⁶ Lacey, D. (1999). The Evolution of Care: A 100-Year History of Institutionalization of People with Alzheimer’s Disease. Journal of Gerontological Social Work, 31(3/4).

⁷⁷ Stone, Julie Lynn. (July 5, 2002). Medicaid: Eligibility for the Aged and Disabled.
Washington, DC: Congressional Research Service (CRS RL31413).

⁷⁸ Kassner, Enid, & Bectel, R.W. (1998). Midlife and Older Americans with Disabilities: Who
Gets Help? A Chartbook. The Public Policy Institute, Research Group: American Association of Retired Persons.

⁷⁹ Stone, Julie Lynn. (July 5, 2002). Medicaid: Eligibility for the Aged and Disabled. Washington, DC: Congressional Research Service (CRS RL31413).

⁸⁰ Ibid., 8.

⁸¹ AARP. (2004). Long-Term Services and Supports. The Policy Book, Chapter 7: AARP Public Policies. Washington, DC: AARP.

⁸² O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518).

⁸³ Congressional Budget Office. (2004). Financing Long-Term Care for the Elderly. Congress of the United States.

⁸⁴ Redfoot, D.L., & Pandya, S.M. (2002). Before the Boom: Trends in Long-Term Supportive Services for Older Americans with Disabilities. Washington, DC: AARP Public Policy Institute.

⁸⁵ O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518).

⁸⁶ Lakdawalla, D., Bhattacharya, J., & Goldman, D. (2001). Are the Young Becoming More Disabled? National Bureau of Economic Research.

⁸⁷ Burwell B.O., & Jackson, B. (1994). The Disabled Elderly and Their Use of Long-Term Care. U.S. Department of Health and Human Services, Washington, DC.

⁸⁸ Hudson, R.B. (1997). The Future of Age-Based Public Policy. Baltimore and London: The Johns Hopkins University Press.

⁸⁹ Kane, R. (2001). Long-Term Care and a Good Quality of Life: Bringing Them Closer Together. The Gerontologist, 41, 3, 293–304. Stanford, CA: Stanford University.

⁹⁰ Kane, R.A., & Kane, R.L. (1987). Long-Term Care: Principles, Programs, and Policies. New York: Springer Publishing Company.

⁹¹ Jonas, S., & Kovner, A.R. (2003). Health Care Delivery in the United States. Seventh Edition. New York: Springer Publishing Company. P. 200.

⁹² Ibid.

⁹³ Stone, Julie Lynn. (July 5, 2002). Medicaid: Eligibility for the Aged and Disabled. Washington, DC: Congressional Research Service (CRS RL31413).

⁹⁴ Ibid.

⁹⁵ Ibid.

⁹⁶ Ibid.

⁹⁷ American Health Care Association – Health Services Research and Evaluation. (June 2003). Nursing Facility Total, Average and Median Number of Patients per Facility and ADL Dependence. Available at www.ahca.org. Washington, DC: American Health Care Association.

⁹⁸ 2001 Urban Institute Long-Term Care Chart Book.

⁹⁹ Stone, Julie Lynn. (July 5, 2002). Medicaid: Eligibility for the Aged and Disabled. Washington, DC: Congressional Research Service (CRS RL31413).

¹⁰⁰ Ibid.

¹⁰¹ See footnote 26.

¹⁰² Hudson, R.B. (1997). The Future of Age-Based Public Policy. Baltimore and London: The Johns Hopkins University Press.

¹⁰³ Kane, R. (2001). Long-Term Care and a Good Quality of Life: Bringing Them Closer Together. The Gerontologist, 41, 3, 293–304. Stanford, CA: Stanford University.

¹⁰⁴ Stapleton, D.C., & Burkhauser, R.V. (2003). The Decline in Employment of People with Disabilities: A Policy Puzzle. Kalamazoo, Michigan: Upjohn Institute for Employment Research. Chapter 6: Employment and the Changing Disability Population. Ed. H. Stephen Kaye. P. 217–

¹⁰⁵ Ibid., 229.

¹⁰⁶ Regulations currently define SGA for both the SSDI and SSI programs as employment that produces countable earnings of more than $810 a month for nonblind disabled individuals. The
SGA level is indexed to the annual wage index. The SGA level for SSDI blind individuals, set by statute and also indexed to the annual wage index, is currently defined as monthly countable
earnings that average more than $1,350.

¹⁰⁷Government Accountability Office. (2002). SSA and VA Disability Programs: Reexamination of Disability Criteria Needed to Help Ensure Program Integrity. Washington, DC:
GAO (GAO 02-597).

¹⁰⁸ Sweeney, E. (2004). How Do the EITC and CTC Interact with Public Benefits? Center on Budget and Policy Priorities.

¹⁰⁹ Title II of the Social Security Act is administered by the Social Security Administration. Title II appears in the United States Code as §§401-433, subchapter II, chapter 7, Title 42.

¹¹⁰ 42 U.S.C. § 401 (1994) (amended 1999).

¹¹¹ Social Security Disability Planner Home Page. Accessed 2004. Available at www.ssa.gov/dibplan/index.htm.

¹¹² Catalog of Federal Domestic Assistance. General Services Administration, Office of Governmentwide Policy, Office of Acquisition Policy, Regulatory and Federal Assistance
Publication Division. www.cfda.gov.

¹¹³ Ibid., 217.

¹¹⁴ Ibid., 341–42

¹¹⁵ Title XVI appears in the United States Code as §§1381 note-1385 note, subchapter XVI, chapter 7, Title 42.

¹¹⁶ 42 U.S.C. §§ 1381-1383c (1994) (§§ 1382-1382b, 1382d, 1382e, 1383, 1383b amended 1999;§ 1382c amended 1997; § 1383c amended 1996).

¹¹⁷ Supplemental Security Income Home Page. Accessed 2004. Available at www.ssa.gov/notices/supplemental-security-income/.

¹¹⁸ Ibid.

¹¹⁹ Catalog of Federal Domestic Assistance. General Services Administration, Office of Governmentwide Policy, Office of Acquisition Policy, Regulatory and Federal Assistance Publication Division. www.cfda.gov.

¹²⁰ Ibid.

¹²¹ Gold, S. (2005). Social Security Debate and People with Disabilities. Information Bulletin No. 77.

¹²² Tu, H.T. (2004). Rising Health Costs, Medical Debt and Chronic Conditions. Center for Studying Health System Change. Issue Brief. No. 88.

¹²³ Eichner, J., & Blumenthal, D., Eds. (2003). Medicare in the 21st Century: Building a Better Chronic Care System. Washington, DC: National Academy of social Insurance.

¹²⁴ Ibid.

¹²⁵ Ibid.

¹²⁶ Ibid., 27.

¹²⁷ Menton, K.G. (2004). Forecasting the Nursing Home Population. Medical Care, 41(1): 221– 24.

¹²⁸ Miller, E. (2001). Federal and State Initiatives to Integrate Acute and Long-Tem Care: Issues & Profiles. Washington, DC: Congressional Research Service (RL30813). P. 4.

¹²⁹ Ibid.

¹³⁰ Tritx, K., & Lindley, M. (2004). Dual Eligibles: Medicaid Expenditures for Prescription Drugs and Other Services. Washington, DC: Congressional Research Service (RL31987).

¹³¹ Ibid.

¹³² Rizzolo, M., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the Stats in Developmental Disabilities. Department of Psychiatry and Coleman Institute for Cognitive Disabilities: The University of Colorado; Washington, DC: American Association on Mental Retardation.

¹³³ Ibid., 31.

¹³⁴ Mendelsohn, S. (2005). Asset Accumulation and People with Disabilities: The Role and Potential of the Income Tax Law. [Pending publication].

¹³⁵ Honeycutt, A., Grosse, S., Dunlap, L., Schendel, D., Chen, H., Brann, E., & al Homsi, G. (2002). Economic Costs of Mental Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.

¹³⁶ Mendelsohn, S. (2005). Asset Accumulation and People with Disabilities: The Role and Potential of the Income Tax Law. [Pending publication].

¹³⁷ Ibid., 6.

¹³⁸ Ibid.

¹³⁹ Larson, S., Lakin, C., & Huang, J. (2003). Service Use by and Needs of Adults with Functional Limitations or ID/DD in the NHIS-D: Difference by Age, Gender, and Disability. DD Data Brief. University of Minnesota: Research and Training Center on Community Living, Institute on Community Integration.

¹⁴⁰ Ibid., 21.

¹⁴¹ Ibid.

¹⁴¹ Ibid., 22.

¹⁴² Ibid.

¹⁴³ The Henry J. Kaiser Family Foundation. (December 2003). Understanding the Health-Care Needs and Experiences of People with Disabilities.

¹⁴⁴ National Endowment for Financial Education. (2002). Long-Term Care: Our Next National Crisis? A Meeting Sponsored by the National Endowment for Financial Education, Scottsdale, Arizona, May 6–8, 2001. P. 3.

¹⁴⁵ Ibid.

¹⁴⁶ Neal, M.B., & Wagner, D.L. (2001). Working Caregivers: Issues, Challenges, and Opportunities for the Aging Network. NFCSP Issue Brief.

¹⁴⁷ Stone, R.I. (August 2000). Long-Term Care for the Elderly with Disabilities: Current Policy, Emerging Trends, and Implications for the Twenty-First Century. Available at: www.milbank.org/reports/008stone/index.html). New York, NY: Milbank Fund. P. 11.

¹⁴⁸ Ibid.

¹⁴⁹ Ibid.

¹⁵⁰ Ibid., 9.

¹⁵¹ Lechner, V. (1993). Racial Group Responses to Work and Parent Care. Families in Society. Journal of Contemporary Human Services, 74: 93–103.

¹⁵² See footnote 20, Neal and Wagner. (2001).

¹⁵³ American Association for Homes and Services. (2002). Issue Updates. Washington, DC.

¹⁵⁴ National Alliance for Caregiving and AARP. (2004) Caregiving in the U.S. Available at: www.caregiving.org/04finalreport.pdf. (Last viewed: January 19, 2005.)

¹⁵⁵ Arno, P.S. (February 2004). Caregiving in the U.S. Presented at Economic Value of Informal Caregiving. Annual meeting of the American Association of Geriatric Psychiatry, Orlando, FL.

¹⁵⁶ National Alliance for Caregiving and AARP. (2004) Caregiving in the U.S. Available at:www.caregiving.org/04finalreport.pdf. (Last viewed: January 19, 2005.)

¹⁵⁷ Ibid., 9.

¹⁵⁸ Ibid.

¹⁵⁹ National Alliance for Caregiving and AARP. (2004) Caregiving in the U.S. Available at: www.caregiving.org/04finalreport.pdf. (Last viewed: January 19, 2005.)

¹⁶⁰ Ibid., 14.

¹⁶¹ Ibid., 44.

¹⁶² Ibid., 47.

¹⁶³ Government Accountability Office. (1994). Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages. Washington, DC: GAO (GAO/HEHS 95-26).

¹⁶⁴ Altman, B.M., Cooper, P.F., & Cunningham, P.J. (1999). The Case of Disability in the Family: Impact on Health Care Utilization and Expenditures for Non-disabled Members. Milbank Quarterly, 77(1): 39–75.

¹⁶⁵ National Alliance for Caregiving and Brandeis University National Center on Women and Aging. (1999). The MetLife Juggling Act Study: Balancing Caregiving with Work and the Costs Involved. Westport, CT: MetLife Mature Market Institute.

¹⁶⁶ Abelson, A.G. (1999). Economic Consequences and Lack of Respite Care. Psychological Reports, 85: 880–82; Sherman, B.R. (1995). Impact of Home-Based Respite Care on Families of Children with Chronic Illnesses. Children’s Health Care, 24(1): 33–45; Theis, S.L., Moss, J.H., & Pearson, M.A. (1994). Respite for Caregivers: An Evaluation Study. Journal of Community Health Nursing, 11(1): 31–34; and Zarit, S.H., Parris Stephens, M.S., Townsend, A., & Greene, R. (1998). Stress Reduction for Family Caregivers: Effect of Adult Day Care Use. The Journal of Gerontology, 53B(5): S267–S277.

¹⁶⁷ Feinberg, L.F., Newman, S.L., & Van Steenberg, C. (2002). Family Caregiver Support: Policies, Perceptions and Practices in 10 States Since Passage of the National Family Caregiver Support Program. San Francisco: Family Caregiver Alliance.

¹⁶⁸ ASPE, CMS, HRSA, DOL Office of the Assistant Secretary for Policy; BLS & ETA. (2003). Future Supply of Long-term Care Workers in Relation to the Aging Baby Boom Generation: Report to Congress. Washington, DC: ASPE.

¹⁶⁹ Feinberg, L., Horvath, J., Hunt, G., Plooster, L., Kagan, J. Levine, C., Lynn, J., Mintz, S., & Wilkinson, A. (December 1, 2003). Family Caregiving and Public Policy Principles. Bethesda, MD: National Alliance for Caregiving. Available at www.caregiver.org/caregiver/jsp/content/pdfs/op_2004_principles.pdf. (Last viewed: January 19, 2005.)

¹⁷⁰ Results of the 2003 National Survey of State Initiatives on the Long-Term Care Direct-Care Workforce. (March 2004). New York: Paraprofessional Healthcare Institute & North Carolina Department of Health and Human Services’ Office of Long-term Care.

¹⁷¹ Ibid., 5.

¹⁷² Donelan, K., et al. (2002). Challenged To Care: Informal Caregivers in a Changing Health Care System. Health Affairs, (July/August): 222–31.

¹⁷³ Ibid.

¹⁷⁴ HHS Launches Demonstrations to Recruit and Retain Personal Assistance Workers to Help People with Disabilities. (October 2, 2003). Available at: www.hhs.gov/news/press/2003pres/20031002.html. (Last viewed: January 19, 2005.)

¹⁷⁵ Paraprofessonal Healthcare Institute & North Carolina Department of Health and Human Services’ Office of Long-Term Care. (March 2004). Results of the 2003 National Survey of State Initiatives on the Long-Term Care Direct-Care Workforce. Bronx, NY: Paraprofessional Healthcare Institute.

¹⁷⁶ Ibid.

¹⁷⁷ Ibid.

¹⁷⁸ Holzer, H. (2003). Modeling the Future Supply and Demand for Long-Term Care Workers. Washington, DC: American Association of Home and Services for the Aging.

¹⁷⁹ New Freedom Initiative. (2001). “Fulfilling America’s Promise to Americans with Disabilities.” Available at: www.hhs.gov/newfreedom. (Last viewed: January 19, 2005.)

¹⁸⁰ Memorandum from Thomas M. Reilly to the Performance Measurement Advisory Council (February 11, 2003). Available at: www.whitehouse.gov/omb/budintegration/pmac_3-3- 03draft.html. (Last viewed: January 19, 2005.)

¹⁸¹ Ibid.

¹⁸² President’s Committee on People with Intellectual Disabilities. (2004). A Charge We Have to Keep: A Road Map to Personal and Economic Freedom for People with Intellectual Disabilities in the 21st Century. Washington, DC: PCPID.

¹⁸³ Ibid., 19.

¹⁸⁴ Weiner, W. (2003). Long-Term Care and Medicare Policy: Can We Improve the Continuity of Care? Eds. Blumental, Moon, Warshawsky, & Boccuti. Comment paper on How Might We Meet Tomorrow’s Needs for Chronic and Long-Term Care?

¹⁸⁵ Stone-Axelrad, J. (2004). Long-Term Care Insurance Partnership Program. CRS Report to Congress. Washington, DC: Congressional Research Service (RL32610).

¹⁸⁶ The Long-Term Care Insurance Partnership Program provides that people who have exhausted (or used a least some of) their private long-term care insurance benefits may qualify for Medicaid, including its coverage for long-term care benefits, without having to meet the same means-testing requirements applicable to other groups of Medicaid eligibles. See footnote 152, P. 25.

¹⁸⁷ Ibid., 1.

¹⁸⁸ The Fiscal Survey of States. (December 2003). National Governors Association and National Association of State Budget Officers.

¹⁸⁹ National Governors Association. (August 13, 2004). A Lifetime of Health and Dignity: Confronting long-term care challenges in America. Available at: www.subnet.nga.org.ci.2- financial.hgtml.

¹⁹⁰ Ku, L., & Nimalendran, S. (December 22, 2003). Losing Out: States Are Cutting 1.2 to 1.6 Million Low-Income People from Medicaid, SCHIP and Other State Health Insurance Programs. Center on Budget and Policy Priorities.

¹⁹¹ Coleman, B., Fox-Grage, W., & Folkemer, D. (2003). State Long-Term Care: Recent Developments and Policy Directions – 2003 Update. National Conference of State Legislatures.

¹⁹² Ibid., 1.

¹⁹³ Hoffman, E., Klees, B, & Curtis, C. (2003). Brief Summaries of Medicare & Medicaid: Title XVII and Title XIX of the Social Security Act as of November 1, 2003. Office of the Actuary: Centers for Medicare & Medicaid Services, Department of Health and Human Services.

¹⁹⁴ 42 U.S.C. § 1396 (1994).

¹⁹⁵ Feder, J., Komisar, H., & Niefeld, M. (2000). Long-Term Care in the United States: An Overview. Health Affairs, 19(3): 40–56.

¹⁹⁶ Wacker, R.R, Roberto, K.A., & Piper, L.E. (1998). Community Resources for Older Adults: Programs and Services in an Era of Change. Thousand Oaks, CA.

¹⁹⁷ Brief Summaries of Medicare & Medicaid: Title XVIII and Title XIX of the Social Security Act as of November 1, 2003. Prepared by Earl Dirk Hoffman, Jr., Barbara S. Klees, and Catherine A. Curtis. Office of the Actuary, Centers for Medicare & Medicaid Services, Department of Health and Human Services.

¹⁹⁸ Ibid.

¹⁹⁹ Ibid.

²⁰⁰ Ibid.

²⁰¹ Ibid.

²⁰² Smith, G., Doty, P., and O’Keeffe, J. (2000). Consumer-Directed Home and Community Services. Understanding Medicaid Home and Community Services: A Primer. Washington, DC.

²⁰³ CMS program data, May 2004. Available at: www.cms.hhs.gov/researchers/walletcard/04cmsprogramdata.pdf.

²⁰⁴ 2004 Annual Report of the Board of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds. Centers for Medicare & Medicaid Services. Accessed 2004. Available at: www.cms.hhs.gov/publications/trusteesreport/2004/.

²⁰⁵ 42 U.S.C. § 1396n(c) (1994) (amended 1999).

²⁰⁶ Tritz, K. (2004). Long-Term Care: Consumer-Directed Services Under Medicaid. Washington, DC: Congressional Research Service (CRS RL32219).

²⁰⁷ Brief Summaries of Medicare & Medicaid: Title XVIII and Title XIX of the Social Security Act as of November 1, 2003. Prepared by Earl Dirk Hoffman, Jr., Barbara S. Klees, and Catherine A. Curtis. Office of the Actuary, Centers for Medicare & Medicaid Services, Department of Health and Human Services.

²⁰⁸ Summer, L. (May 2003). Medicaid and Long-Term Care. Washington, DC: Georgetown University Long-Term Care Financing Project, fact sheet.

²⁰⁹ Ibid.

²¹⁰ HCFA 64 data, Center for Medicaid and State Operations, Division of Financial Management, Available at: http://aspe.hhs.gov/daltcp/reports/stateltc.htm. (Last viewed January 27, 2005.)

²¹¹ Brief Summaries of Medicare & Medicaid: Title XVIII and Title XIX of the Social Security Act as of November 1, 2003. Prepared by Earl Dirk Hoffman, Jr., Barbara S. Klees, and Catherine A. Curtis. Office of the Actuary, Centers for Medicare & Medicaid Services, Department of Health and Human Services.

²¹² Ibid.

²¹³ Ibid.

²¹⁴ 2004 Annual Report of the Board of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds. Centers for Medicare & Medicaid Services. Accessed 2004. Available at: www.cms.hhs.gov/publications/trusteesreport/2004/.

²¹⁵ Ibid.

²¹⁶ Ibid.

²¹⁷ CMS program data, May 2004. Available at: www.cms.hhs.gov/researchers/walletcard/04cmsprogramdata.pdf.

²¹⁸ 2004 Annual Report of the Board of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds. Centers for Medicare & Medicaid Services. Accessed 2004. Available at: www.cms.hhs.gov/publications/trusteesreport/2004/.

²¹⁹ Brief Summaries of Medicare & Medicaid: Title XVIII and Title XIX of the Social Security Act as of November 1, 2003. Prepared by Earl Dirk Hoffman, Jr., Barbara S. Klees, and Catherine A. Curtis. Office of the Actuary, Centers for Medicare & Medicaid Services, Department of Health and Human Services.

²²⁰ Ibid.

²²¹ 2004 Annual Report of the Board of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds. Centers for Medicare & Medicaid Services. Accessed 2004. Available at: www.cms.hhs.gov/publications/trusteesreport/2004/.

²²² National Governors Association. (2005). Governors Urge Congress, President to Reform Medicaid Aging Population and Increased Number of Low Income Families are Driving up States’ Medicaid Costs. Washington, DC: NGA. Available at: www.nga.org/nga/legislativeUpdate/1,1169,C_ISSUE_BRIEF^D_7813,00.html. (Last viewed: January 26, 2005.)

²²³ Disability advocates and housing professionals agree that this figure underestimates the number of people with disabilities with worst-case housing needs, because it is based solely on those people with disabilities receiving SSI and does not include other low-income people with disabilities.

²²⁴ Office of Policy Development and Research. (December 2003). Trends in Worst Case Needs for Housing, 1978-1999: A Report to Congress on Worst Case Housing Needs. Plus Update on Worst Case Needs in 2001. Office of Policy Development and Research, U.S. Department of Housing and Urban Development.

²²⁵ Burt, M., Aron, L.Y., & Lee, E. (2001). Helping America’s Homeless: Emergency Shelter or Affordable Housing. Washington, DC: The Urban Institute.

²²⁶ Priced Out in 2002. (2003). Technical Assistance Collaborative and Consortium for Citizens with Disabilities Housing Task Force.

²²⁷ Government Accountability Office. (June 30, 2003). Transportation-Disadvantaged Populations: Some Coordination Efforts Among Programs Providing Transportation Services, But Obstacles Persist. Washington, DC: GAO (GAO-03-697).

²²⁸ CTAA is a national professional membership association that conducts research and provides technical assistance for community transportation providers.

²²⁹ Community Transportation Association of America. (March 2002). Building Mobility Partnerships: Opportunities for Federal Investment. Washington, DC: CTAA.

²³⁰ Government Accountability Office. (February 24, 2004). Transportation-Disadvantaged Populations: Federal Agencies Are Taking Steps to Assist States and Local Agencies in Coordinating Transportation Services. Washington, DC: GAO (GAO-04-420R).

²³¹ Ibid.

²³² Ibid.

²³³ United We Ride Program Home Page. Federal Transit Administration of the Department of Transportation. Accessed 2004. Available at: www.fta.dot.gov/CCAM/www/index.html.

²³⁴ White House. (February 26, 2004). Executive Order 13330—Human Services Transportation Coordination. 69 FR 9185. Available at: www.whitehouse.gov/news/releases/2004/02/20040224-9.html.

²³⁵ Ibid.

²³⁶ Centers for Disease Control, www.cdc.gov/nchs.

²³⁷ USDA Report to Congress. (December 1999). Promoting Healthy Eating: An Investment in the Future. Prepared by the Food and Nutrition Service, Alexandria, VA.

²³⁸ Kerschner, H., & Pegues, J.M. (1998). Productive Aging: A Quality of Life Agenda. Journal of the American Dietetic Association, 98: 1445–448.

²³⁹ The American Dietetic Association. (1998). Position of The American Dietetic Association: The Role of Nutrition in Health Promotion and Disease Prevention Programs. Journal of the American Dietetic Association, 98: 205–08.

²⁴⁰ The American Dietetic Association. (2004). Position of the American Dietetic Association: Providing Nutrition Services for Infants, Children and Adults with Developmental Disabilities and Special Health Care Needs. Journal of the American Dietetic Association, 104(1): 97–107.

²⁴¹ Committee on Nutrition Services for Medicare Beneficiaries, Food and Nutrition Board. (1999). The Role of Nutrition in Maintaining Health in the Nation’s Elderly: Evaluating Coverage of Nutrition Services for the Medicare Population. Washington, DC: Institute of Medicine.

²⁴² Jensen, G.L., Kita, K., Fish, J., Heydt, D., & Frey, C.. (1997). Nutrition Risk Screening Characteristics of Rural Older Persons: Relation to functional limitations and health care charges. American Journal of Clinical Nutrition, 66: 819–28.

²⁴³ The American Dietetic Association. (1995). Position of The American Dietetic Association: Cost-effectiveness of Medical Nutrition Therapy. Journal of the American Dietetic Association, 95: 88–91.

²⁴⁴ Gallagher-Allred, C.R., Voss, A.C., Finn, S.C., & McCamish, M.A. (1996). Malnutrition and Clinical Outcomes: The Case for Medical Nutrition Therapy. Journal of the American Dietetic Association, 96: 361–369.

²⁴⁵ Chima, C.S., Barco, K., Dewitt, M.L., Maeda, M., Teran, J.C., & Mullen, K.D. (1997). Relationship of Nutritional Status to Length of Stay, Hospital Costs, and Discharge Status of Patients Hospitalized in the Medical Service. Journal of the American Dietetic Association, 97: 975–978.

²⁴⁶ 29 U.S.C. Sec 2202(2).

²⁴⁷ Assist Guide 1999-2003.

²⁴⁸ Ibid.

²⁴⁹ National Council on Disability. (2000). Federal Policy Barriers to Assistive Technology. Washington, DC: NCD. Available at: www.ncd.gov/newsroom/publications/2000/pdf/assisttechnology.pdf. (Retrieved: October 4, 2004.)

²⁵⁰ U.S. Department of Health and Human Services. (August 27, 2003). Administration on Aging Fact Sheet: Assistive Technology. Washington, DC: HHS.

²⁵¹ The Federal Alternative Financing Program. (November 2002). First Year Analysis of the First Year of Operation of the Federal Alternative Financing Program for Individuals with Disabilities - Providing Low Cost Loans for the Purchase of Assistive Technology. Accessed 2004. Available at: www.resna.org/AFTAP/library/AFPreport.txt.

²⁵² Alternative Financing Programs At-A-Glance FY2003 Grantees. (Draft October 2003). Produced by RESNA/AFTAP, 1700 North Moore Street, Suite 1540, Arlington, VA 22209, 703- 524-6686 (V), 703-524-6639 (TDD), 703-524-6630 (Fax). Available at: www.resna.org/AFTAP.

²⁵³ See the U.S. Department of Health and Human Services. (2002). Delivering on the Promise: Compilation of Individual Federal Agency Reports to Eliminate Barriers and Promote Community Integration.

²⁵⁴ Smith, G., Doty, P., & O’Keefe, J. (2000). Supporting Informal Caregiving. In Understanding Medicaid Home and Community Services: A Primer. U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Washington, DC.

²⁵⁵ Lutzky, S., Alexcih, L., Duffy, J., & Neill, C. (2000). Review of the Medicaid 1915(c) Homeand Community-Based Services Waiver Program literature and program data. Final report prepared for the Department of Health and Human Services, Health Care Financing Administration. Falls Church, VA: The Lewin Group.

²⁵⁶ Ibid.

²⁵⁷ Ibid.

²⁵⁸ Milne, D., Change, D., & Mollica, R. (January 2004). State Perspectives on Medicaid Long-Term Care: Report from a July 2003 State Forum. Portland, ME: National Academy for State Health Policy.

²⁵⁹ Ibid.

²⁶⁰ Ibid.

²⁶¹ Monks, J. (September 24, 2001). Testimony to the Commission on Affordable Housing and Health Facility Needs for Seniors in the 21st Century. Washington, DC: U.S. House of Representatives. Available at: www.seniorscommission.gov/pages/hearings/010924/monks.html. (Last viewed: January 25, 2005.)

²⁶² NCB Development Corporation. (2005). About Us. Washington, DC: NCBDC. Available at: www.ncbdc.org. (Last viewed: January 26, 2005.)

²⁶³ Foster, L., Brown, R., Phillips, B., Schore, J., & Carlson, B.L. (March 2003). Does Consumer Direction Affect the Quality of Medicaid Personnel Assistance in Arkansas? Princeton, NJ: Mathematica Policy Research. Available at: www.mathematicampr.com/publications/PDFs/condirect.pdf. (Last viewed: January 21, 2005).

²⁶⁴ For additional information, visit www.cashandcounseling.org/index.html. (Last viewed: January 21, 2005).

²⁶⁵ Williams, B. (2003). Consumer-Directed Services: Improving Medicaid Beneficiaries’ Access to Quality Care: Testimony before the House Committee on Energy and Commerce, Subcommittee on Health. Washington, DC: U.S. House of Representatives.

²⁶⁶ Wisconsin Department of Health and Family Services. (2005). Aging and Disability Resource Centers. Madison, WI: Wisconsin DHFS. Available at: www.dhfs.wisconsin.gov/ltcare/generalinfo/rcs.htm. (Last viewed: January 21, 2005.)

²⁶⁷ Centers for Medicare and Medicaid Services. (September 2004). Real Choice Systems Change Grant Program: Second Year Report. Baltimore, MD: CMS.

²⁶⁸ Ibid.

²⁶⁹ Ibid.

²⁷⁰ National Council on Disability. (October 26, 2004). Consumer-Directed Health Care: How Well Does It Work? Washington, DC: NCD.

²⁷¹ Centers for Medicare and Medicaid Studies. (2004). Opening Doors to Independence: CMS Accomplishments in Support of the Presidential New Freedom Initiative. Baltimore, MD: CMS. Available at: www.cms.hhs.gov/independenceplus/. (Last viewed: January 21, 2005.)

²⁷² Centers for Medicare and Medicaid Studies. (2004). HHS Approves California Plan for Self- Directed Home Care. Baltimore, MD: CMS Press Releases. Available at: www.hhs.gov/news. (Last viewed: January 21, 2005.)

²⁷³ Ibid.

²⁷⁴ Ibid.

²⁷⁵ Congressional Research Service. (February 6, 2004). Long-term Care: Consumer-Directed Services Under Medicaid. Washington, DC: Congressional Research Service.

²⁷⁶ Crisp, S., Eiken, S., Gerst, K., & Justice, D. (2004). Money Follows the Person and Balancing Long-Term Care Systems: State Examples. Washington, DC: Medstat, Research and Policy Division.

²⁷⁷ President’s Committee for People with Intellectual Disabilities. (2004). A Charge We Have to Keep: A Road Map to Personal and Economic Freedom for Persons with Intellectual Disabilities in the 21st Century.

²⁷⁸ Americans with Disabilities Act, 42 U.S.C. §§ 12131-12165 (2004).

²⁷⁹ Rehabilitation Act of 1973, 29 U.S.C. §§ 701-796l (2004).

²⁸⁰ Taylor Burke, J.D., & Sara Rosenbaum, J.D. (July 2004). The Meaning of Community Integration: Exploring the ADA Legal Standard Within a Broader Social Context. Funded by the Center for Health Care Strategies, Inc. under The Robert Wood Johnson Foundation’s Medicaid Managed Care Program.

²⁸¹ Rehabilitation Act of 1973, U.S. Department of Education. Available at: www.ed.gov/policy/speced/reg/narrative.html?exp=0. Accessed December 13, 2004.

²⁸² 42 U.S.C. § 12101(a)(8) (2004).

²⁸³ 42 U.S.C. § 12132 (2004).

²⁸⁴ 28 C.F.R. § 35.130 (b)(7), (d)-(e)-1 (2004).

²⁸⁵ 28 C.F.R. pt 35, App. A. (2004).

²⁸⁶ Olmstead v. L.C., 119 S.Ct. 2176 (1999).

²⁸⁷ National Low-Income Housing Coalition. (2002). The Olmstead Factor: Integrating Housing for People with Disabilities. Washington, DC: LIHIS.

²⁸⁸ The Olmstead decision interpreted Title II of the ADA and its implementing regulations, which oblige states to administer their services, programs, and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” (28 C.F.R. 35.130(d) (2004)).

²⁸⁹ 28 C.F.R. 35.130(b)(7) (2004).

²⁹⁰ New Freedom Initiative. (2001). Retrieved on April 27, 2002. Available at: www.hhs.gov/newfreedom.

²⁹¹ White House. (2002). New Freedom Initiative.

²⁹² New Freedom Initiative. (2001).”Fulfilling America’s Promise to Americans with Disabilities.” Available at: www.hhs.gov/newfreedom/.

²⁹³ Executive Order No. 13217, §§1(a)-(c).

²⁹⁴ See the U.S. Department of Health and Human Services. (2002). Delivering on the Promise: Compilation of Individual Federal Agency Reports to Eliminate Barriers and Promote Community Integration.

²⁹⁵ New Freedom Initiative. (2001). The President’s New Freedom Initiative for People with Disabilities: The 2004 Progress Report. Available at: www.whitehouse.gov/infocus/newfreedom/toc-2004.html. (Last viewed January 26, 2005.)

²⁹⁶ See Letters to State Medicaid Directors. Available at: www.cms.hhs.gov/states/letters/. See, for example, Promising State Practices, SMDL#-02-012. Available at: www.cms.hhs.gov/states/letters/smd81302.pdf. (Last viewed January 18, 2005.); Olmstead Update Number 3 (HCFA Update). Available at: www.cms.hhs.gov/states/letters/smd725a0.asp. (Last viewed January 18, 2005); Olmstead Update Number 2 (Questions and Answers). Available at: www.cms.hhs.gov/states/letters/smd72500.asp.

²⁹⁷ Smith, G. (December 2004). Status Report: Litigation Concerning Home and Community Services for People with Disabilities. Portland, OR: Human Services Research Institute.

²⁹⁸ Olmstead v. L.C. by Zimring, 527 U.S.C. 581, 144 L. Ed. 2d 540, 119 S. Ct. 2176 (1999).

²⁹⁹ Merlis, M. (October 2004). Medicaid Reimbursement Policy: CRS Report to Congress. Washington, DC: Congressional Research Service.

³⁰⁰ Ibid.

³⁰¹ O’Brien, E., & Elias, R. (May, 2004). Medicaid and Long-term Care. Washington, DC: Henry J. Kaiser Foundation.

³⁰² Ibid.

³⁰³ Mollica, R. (December, 2004). Making Medicaid Work for the 21st Century. Issue Brief No. 5. Washington, DC: National Academy for State Health Policy. Available at: www.hcbs.org/files/57/2816/IssueBrief5.pdf. (Last viewed: January 18, 2005.)

³⁰⁴ Merlis, M. (October, 2004). Medicaid Reimbursement Policy: CRS Report to Congress. Washington, DC: Congressional Research Service.

³⁰⁵ Ibid.

306 Center for Health Policy and Research. (October 8, 2004). Promising Practices: Managing the Care of People with Disabilities. Shrewsbury, MA: University of Massachusetts Center for Health Policy and Research.

³⁰⁷ Congressional Research Service. (October 25, 2004). CRS Report for Congress: Medicaid Reimbursement Policy. Washington, DC: CRS (Order Code RL32644).

³⁰⁸ U.S. Department of Justice. (August 3, 2004). Justice Department Finds State of California Contributes to Unnecessary Institutionalization at Laguna Honda Nursing Home. Washington, DC: U.S. Department of Justice. Available at: www.usdoj.gov/opa/pr/2004/August/04_crt_537.htm. (Last viewed: January 18, 2005.)

³⁰⁹ Ibid.

³¹⁰ U.S. Department of Justice. (August 3, 2004). Letter to the Governor of California re: Laguna Honda Hospital and Rehabilitation Center. Washington, DC: U.S. Department of Justice. Available at: http://www.usdoj.gov/crt/split/documents/laguna_honda_findlet_aug3.pdf.

³¹¹ Ibid.

³¹² Smith, G. (December 2004). Status Report: Litigation Concerning Home and Community Services for People with Disabilities.

³¹³ 197 F. 3d 611 (2d Cir. 1999), cert denied, 121 S. Ct. 156 (2000), 23 MPDLR 878.

³¹⁴ Ibid., 613-14.

³¹⁵ Ibid., 619.

³¹⁶ 527 U.S. at 603, n.14.

³¹⁷ Rodriguez, 197 F. 3d at 619.

³¹⁸ 527 U.S. at 603-07.

³¹⁹ Fisher v. Oklahoma Health Care Authority, 335 F. 3d 1175 (10th Cir. 2003).

³²⁰ Ibid., 1181.

³²¹ Ibid., 1182.

³²² Ibid.

³²³ Ibid.,

³²⁴ Ibid., 1181.

³²⁵ Ibid., 1182.

³²⁶ Ibid.

³²⁷ Ibid.

³²⁸ Ibid., 1183.

³²⁹ United States District Court of Arizona, No. Civ. 00-0067-TUC-EHC (August 12, 2004).

³³⁰ Ibid.

³³¹ Ibid.

³³² Ibid., quoting, 42 C.F.R. § 447.204 (2004).

³³³ Ibid.

³³⁴ Smith, G. (December 2004). Status Report: Litigation Concerning Home and Community Services for People with Disabilities.

³³⁵ Hoving, T. (1978). The Untold Story. New York: Simon and Schuster.

³³⁶ Ibid., 369.

³³⁷ Scanlon, W. (2003). Long-Term Care and Medicare Policy: Can We Improve the Continuity of Care? Eds. Blumental, Moon, Warshawsky, & Boccuti. Comment Paper.

³³⁸ Schalock, R. (2004). The Emerging Disability Paradigm. Journal of Disability Policy Studies 14(4).

³³⁹ National Council on Disability. (2004). Report on Consumer-Directed Health Care: How Well Does It Work? Washington, DC: NCD.

³⁴⁰ Estes, C.L., & Linkins, K.W. (1999). Devolution and Aging Policy: Racing to the Bottom In Long-Term Care. In Eds. Minkler & Estes, Critical Gerontology: Perspectives from Political and Oral Economy. New York: Baywood.

³⁴¹ Niebuhr, R. (1956). An Interpretation of Christian Ethics. New York: Meridian Books.

³⁴² Please refer to Hartnett, J., & Morris, M. (2005). State of 21st Century Long-Term Services and Supports Financing and Systems Reform for Americans with Disabilities. See Chapter 1 for an explanation of the rich picture methodology. P. 4.

³⁴³ Government Accountability Office. (February 2005). 21st Century Challenges: Reexamining the Base of the Federal Government. Washington, DC: GAO (GAO-05-325SP).

³⁴⁴ Ibid., 15. Adaptation of Table 1. Government Accountability Office. (February 2005). 21st Century Challenges: Reexamining the Base of the Federal Government. Washington, DC: GAO (Illustrative GAO-05-325SP). P. 35. Generic Reexamination Criteria.

³⁴⁵ Government Accountability Office. (February 2005). 21st Century Challenges: Reexamining the Base of the Federal Government. Washington, DC: GAO (GAO-05-325SP).

³⁴⁶ Blumenthal, D., Moon, M., Warshawsky, M., & Boccuti, C., Eds. (2003). Long-Term Care and Medicare Policy. Can We Improve the Continuity of Care? National Academy of Social Insurance. Brookings Institution Press.

³⁴⁷ Kotlikkoff, L.J., & Burns, S. (2005). The Coming Generational Storm: What You Need to Know About America’s Economic Future. Cambridge Massachusetts: MIT Press.

³⁴⁸ Congressional Budget Office. (February 9, 2005). The Director of the Congressional Budget Office in Testimony on Social Security Reform before the Committee on the Budget, U.S. House of Representatives.

³⁴⁹ Longman, P. (2004). The Empty Cradle. How Falling Birthrates Threaten World Prosperity and What to Do About It. New York: New America Book: Basics Publisher.

³⁵⁰ Government Accountability Office. (2005). Long-Term Care Financing. Growing Demand and Cost of Services Are Straining Federal and State Budgets. Washington, DC: GAO (GAO-05- 564T).

³⁵¹ Congressional Budget Office. (February 9, 2005). The Director of the Congressional Budget Office in Testimony on Social Security Reform before the Committee on the Budget, U.S. House of Representatives.

³⁵² Produced by the Consortium for Citizens with Disabilities, 1660 L Street NW, Suite 701, Washington, DC 20036. www.c-c-d.org. CCD, a coalition of over 100 national consumer, provider, and advocacy organizations, advocates for national public policy to ensure the selfdetermination, independence, empowerment, integration, and inclusion of the 54 million children and adults with disabilities living in the United States.

³⁵³ The National Center for Health Statistics defines a person as disabled if he or she has “specific physical, functional, or mental/emotional disability or limiting condition, has a lot of difficulty performing daily self-maintenance activities, uses special equipment or devices such as wheelchair or breathing aid, and is limited in a major or other life activity due to physical, mental, or emotional problems.” Kaiser Commission on Medicaid: Medicaid’s Role for Persons with Disabilities. P. 10.

³⁵⁴ Ibid. Defined as a disabling condition or impairment that has already lasted or is expected to last for at least one year.

³⁵⁵ Kaiser Commission on Medicaid and the Uninsured. (August 2003). Medicaid’s Role for Persons with Disabilities.

³⁵⁶ O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518).

³⁵⁷ Kaiser Commission on Medicaid and the Uninsured: Medicaid’s Role for Persons with Disabilities. August 2003. P. 10.

³⁵⁸ Williams, B., Claypool, H., & Crowley, J.S. (2005). Navigating Medicare and Medicaid, 2005. A Resource Guide for People with Disabilities, Their Families, and Their Advocates. The Henry J. Kaiser Family Foundation.

³⁵⁹ GAO-05-282SP. The Long-Term Fiscal Challenge. February 2005. Comptroller General’s Forum. Government Accountability Office.

³⁶⁰ Ibid., 5.

³⁶¹ Ibid., 6

³⁶² Ibid., 6

³⁶³ Blumenthal, D., Moon, M., Warshawsky, M., & Boccuti, C., Eds. (2003). Long-Term Care and Medicare Policy. Can We Improve the Continuity of Care? National Academy of Social Insurance. Brookings Institution Press.

³⁶⁴ Smith, V., & Moody, G. (2005). Medicaid in 2005: Principles & Proposals for Reform. Health Management Association. Prepared for the National Governors Association.

³⁶⁵ O’Shaughnessy, C. (2003). Long–Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518).

³⁶⁶ Smith, V., & Moody, G. (2005). Medicaid in 2005: Principles & Proposals for Reform. Health Management Association. Prepared for the National Governors Association. P. 13

³⁶⁷ Ibid.

³⁶⁸ Sachs, J.D. (2005). The End of Poverty. Economic Possibilities for Our Time. New York: Penguin Press.

³⁶⁹ Hagen, S. (2004). Financing Long-Term Care for the Elderly. Washington, DC: Congressional Budget Office.

³⁷⁰ The Henry J. Kaiser Family Foundation. (2003). Understanding the Health-Care Needs and Experiences of People with Disabilities.

³⁷¹ The risk of disability is as great as or greater than other risks that are routinely insured, but workers and employers are far more likely to consider health, life, and dental insurance before giving thought to disability income. The public overestimates the help that is available from public disability insurance programs, which do no pay enough to maintain the standard of living for those who do qualify. The Actuarial Foundation. (2004). Disability Insurance: A Missing Piece in the Financial Security Puzzle: Society of Actuaries Disability Chart Book Task Force: The Actuarial Foundation: America’s Health Insurance Plans.

³⁷² The Actuarial Foundation. (2004). Disability Insurance: a Missing Piece in the Financial Security Puzzle: Society of Actuaries Disability Chart Book Task Force: The Actuarial Foundation: America’s Health Insurance Plans.

³⁷³ Purushotham, M. (2004). Individual Disability Income Insurance Lapse Experience. A Joint Study by LIMRA International and the Society of Actuaries.

³⁷⁴ Dorn, S. (2004). Towards Incremental Progress: Key Facts About Groups of Uninsured. Economic and Social Research Institute. Washington, DC. Employers of Small Business.

³⁷⁵ Davis, K. (2004). Transformational Change: A Ten-Point Strategy to Achieve Better Health Care for All. The Commonwealth Fund. New York.

³⁷⁶ Paraprofessional Healthcare Institute. (2004). Results of the 2003 National Survey of State Initiatives on the Long-Term Care Direct-Care Workforce. North Carolina Department of Health and Human Services, Office of Long-Term Care.

³⁷⁷ Levine, L. (2003). Family Caregiving to the Elderly by Employed Persons: The Effects on Working Caregivers, Employers, and Federal Policy. Congressional Research Services: The Library of Congress (RL31755).

³⁷⁸ Data Profile. (2005). A Decade of Informal Caregiving. Are today’s informal caregivers different than informal caregivers a decade ago? Center on an Aging Society, Georgetown University.

³⁷⁹ World Health Organization. (2002). Toward a Common Language for Functioning, Disability and Health.

³⁸⁰ National Council on Disability. (2004). Request for Proposal: Long-Term Services and Supports Financing and Systems Reform for Americans with Disabilities.

³⁸¹ AARP. (2004). The Policy Book: AARP Public Policies: Long-Term; and O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518). Services and Supports.

³⁸² Ibid., 3.

³⁸³ Tritz, K. (2004). Long-Term Care: Consumer-Directed Services Under Medicaid. Congressional Research Service. The Library of Congress (RL32219). P. 10.

³⁸⁴ Ibid.

³⁸⁵ Honeycut, A.A., Grosse, S.D., Dunlap, L.J., Schendel, D.E., Chen, H., Brann, E., & Homsi, G. (2002). Economic Costs of Mental Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.

³⁸⁶ Hagen, S. (2004). Financing Long-Term Care for the Elderly. Congressional Budget Office. See p. 16, box 2-1, Long-Term Care Expenditures for None Elderly People.

³⁸⁷ 2005 OASDI Trustee Report. Assumptions About the Future. Part II. Overview. Available at: www.ssas.gov/OACT/TR/TR05/II_assump.html.

³⁸⁸ Spector, W.D., Fleishman, J.A., Pezzin, L.E., & Spillman, B.C. (2004). The Characteristics of Long-Term Care Users. Agency for Healthcare Research and Quality. U.S. Department of Health and Human Services.

³⁸⁹ Ibid., 5.

³⁹⁰ Ibid.

³⁹¹ Ibid.

³⁹² Spector, W.D., Fleishman, J.A., & Pezzin, L.E. (1994) The Characteristics of Long-term Care Users. AHRQ Report. Publication No. 00-0049.

³⁹³ Spector, W.D., Fleishman, J.A., & Pezzin, L.E. (1994). The Characteristics of Long-term Care Users. AHRQ Report. Publication No. 00-0049; Disability Supplement to the National Health Interview Survey (NHIS-D) Phase 1 and the National Long-Term Care Survey (NLTCS).

³⁹⁴ The Kaiser Commission on Medicaid and the Uninsured. (2004). Medicaid’s Role for People with Disabilities. P. 17.

³⁹⁵ Williams, B., Claypool, H., & Crowley J.S. (2005). Navigating Medicare and Medicaid, 2005. A Resource Guide for People with Disabilities, Their Families, and Their Advocates. The Henry J. Kaiser Family Foundation.

³⁹⁶ Robert Wood Johnson Foundation. (January 2000). Health and Health Care 2010, The Forecast, the Challenge. The Institute for the Future. P. 17.

³⁹⁷ The Kaiser Commission on Medicaid and the Uninsured. (2004). Medicaid’s Role for People with Disabilities. P. 18.

398 Disability: Federal Survey Definitions, Measurements, and Estimates. Data Digest. Public Policy Institute. AARP. DD Number 98.

³⁹⁹ Rowe, J.W., & Kahn, R.L. (1998). Successful Aging. New York: Random House.

⁴⁰⁰ Tilly, J., Goldenson, S., Kasten, J., O’Shaughnessy, C., Kelly, R., & Sidor, G. (2000). Long-Term Care Chart Book. Persons Served, Payers and Spenders. Congressional Research Service: The Library of Congress.

⁴⁰¹ U.S. Department of Health and Human Services. (February 2003). Changes in Elderly Disability Rates and the Implications for Health Care Utilization and Cost. Washington, DC: HHS Assistant Secretary for Planning and Evaluation Office of Disability, Aging and Long-Term Care Policy. P. ii.

⁴⁰² U.S. Department of Health and Human Services. (February 2003). Changes in Elderly Disability Rates and the Implications for Health Care Utilization and Cost. Washington, DC: HHS Assistant Secretary for Planning and Evaluation Office of Disability, Aging and Long-Term Care Policy.

⁴⁰³ U.S. Department of Health and Human Services. (November 1996). Beyond the Water’s Edge: Charting the Course of Managed Care for People with Disabilities—Conference Resource Book. Washington, DC: HHS.

⁴⁰⁴ Ibid.

⁴⁰⁵ Ibid.

⁴⁰⁶ Ibid.

⁴⁰⁷ LaPlante, M.P., Harrington, C., & Kang, T. (2004). Unmet Need for Personal Assistance Services. Estimating the shortfall in hours of help and adverse consequences. Journal of Gerontology, 59: 98–108.

⁴⁰⁸ Ibid.

⁴⁰⁹ LaPlante, M.P., Harrington, C., & Kang, T. (2002). Estimating Paid and Unpaid Hours of Personal Assistance Services in Activities of Daily Living Provided to Adults Living at Home. Health Services Research, 37(2): 397–415.

⁴¹⁰ Burwell, B., Crown, T., & Drabek, J. (November 1997). Children with Severe Chronic Conditions on Medicaid. U.S. Department of Health and Human Services.

⁴¹¹ Ibid.

⁴¹² Adler, M. (January 1995). ASPE Research Notes.

⁴¹³ Ibid.

⁴¹⁴ Urban Institute. (2003). Long-Term Care. Consumers, Providers, and Financing. A Chart Book. Washington, DC: Urban Institute.

⁴¹⁵ Adler, M. (January 1995). ASPE Research Notes.

⁴¹⁶ Administration on Aging. (2000). A Profile of Older Americans: 2000. Administration on Aging, U.S. Department of Health and Human Services.

⁴¹⁷ Ibid.

⁴¹⁸ Ibid.

⁴¹⁹ Weeks, J. (2004). The Second Longitudinal Study of Aging. Centers for Disease Control and Prevention National Center for Statistics.

⁴²⁰ Administration on Aging. (2000). A Profile of Older Americans: 2000. Administration on Aging, U.S. Department of Health and Human Services.

⁴²¹ Ibid.

⁴²² Ibid.

⁴²³ Ibid.

⁴²⁴ Ibid.

⁴²⁵ Ibid.

⁴²⁶ U.S. Census Bureau. (2004). Projections of the Total Resident Population by 5-year Age Groups. U.S. Census Bureau, Washington, DC.

⁴²⁷ Spillman, B.C. (February 3, 2003). Changes in Elderly Disability Rates and Implications for Health Care Utilization and Cost. U.S. Department of Health and Human Services.

⁴²⁸ Stone, R.I. (August 2000). Long-Term Care for the Elderly with Disabilities. Current Policy, Emerging Trends and Implications for the Twenty-First Century. New York: NY: Milbank Memorial Fund.

⁴²⁹ Tu, H. (September 2004). Rising Health Costs, Medical Debt and Chronic Conditions. Center for Studying Health Care Change.

⁴³⁰ Chronic Disease Overview. (2004). National Center for Chronic Disease Prevention and Health Prevention.

⁴³¹ U.S. Department of Health and Human Services. (January 2000). Healthy People 2010: Understanding and Improving Health. Washington, DC: HHS.

⁴³² Yach, D., et al. (June 2, 2004). The Global Burden of Chronic Diseases. Overcoming Impediments to Prevention and Control. JAMA, 291(21).

⁴³³ Chronic Disease Overview. (2004). National Center for Chronic Disease Prevention and Health Prevention.

⁴³⁴ Wagner, E. (2004). Improving the Care of the Chronically Ill. MacColl Institute for Health Care Innovation. Group Health Cooperative.

⁴³⁵ Berwick, D. (March 2004). Designing a 21st Century Health Care System. Institute for Healthcare Improvement.

⁴³⁶ McGlynn, T., et al. (June 26, 2003). The Quality of Health Care Delivered to Adults in the U.S. NEJM, 348: 2635–645.

⁴³⁷ Tu, H. (September 2004). Rising Health Costs, Medical Debt and Chronic Conditions. Center for Studying Health Care Change.

⁴³⁸ Ibid.

⁴³⁹ Ibid.

⁴⁴⁰ Ibid.

⁴⁴¹ Feinberg, L.F., Newman, S.L., & Van Steenberg, C. (November 2002). Family Caregiver Support; Policies, Perceptions and Practices in 10 States Since Passage of the National Family Caregiver Support Program. Family Caregiver Alliance. P. 9.

⁴⁴² Ibid., 1.

⁴⁴³ Spector, W.D., Shaffer, T.J., Hodlewsky, R.T., De La Mare, J.J., & Rhoades, J.A. (June 2000). Future Directions for Community-Based Long Term Care Health Services Research. P. 6.

⁴⁴⁴ U.S. Department of Health and Human Services. (January 2000). Healthy People 2010: Understanding and Improving Health. Washington, DC: HHS.

⁴⁴⁵ The Henry J. Kaiser Family Foundation. (March 2005). Race, Ethnicity and Health Care. March 2005.

⁴⁴⁶ Newacheck, P.W., Stein R.E.K., Bauman, L., & Hung, Y., (2003). Disparities in the Prevalence of Disability Between Black and White Children. Pediatric Adolescent Medicine, 157: 244–48.

⁴⁴⁷ The Henry J. Kaiser Family Foundation. (March 2005). Race, Ethnicity and Health Care. Policy Challenges and Opportunities in Closing the Racial/Ethnic Divide in Health Care.

⁴⁴⁸ Kijakazi, K. (2003). GAO Report Shows Social Security is Favorable to People of Color But Some Changes in It Could Harm Minority Communities. Reference made to GAO—03-387.

⁴⁴⁹ Ibid.

⁴⁵⁰ Tritz, K. (2004). Dual Eligibles: Medicaid Expenditures for Prescription Drugs and Other Services. CRS Report to Congress. Congressional Research Service: The Library of Congress (RL31987).

⁴⁵¹ Social Security Amendments of 1965 (P.L.89-97).

⁴⁵² Herz, E., Hearne, J., Stone-Axelrad, J. Tritz, K., Baumrucker, E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How Medicaid Works: Program Basics. CRS Report for Congress. Congressional Research Service: The Library of Congress (RL32277). P. 2.

⁴⁵³ Scott, C. (2004). Medicaid and the Current State Fiscal Crisis. CRS Report for Congress. Congressional Research Services : The Library of Congress (RL31773).

⁴⁵⁴ Ibid., 1.

⁴⁵⁵ Crowley, J. S., & Elias, R. (2003). Medicaid’s Role for People with Disabilities. The Kaiser Commission on Medicaid and the Uninsured.

⁴⁵⁶ Administration on Aging. (2000). A Profile of Older Americans: 2000. Administration on Aging, U.S. Department of Health and Human Services. The 10 areas with the highest poverty rates for the elderly over the period of 1997 to 1999 were Mississippi 19.1 percent; Louisiana 17.1 percent; the District of Columbia 16.5 percent; Arkansas 15.8 percent; West Virginia 15.1 percent; New Mexico 14.8 percent; Texas 14.4 percent; Alabama 13.3 percent; New York 13.2 percent, and North Carolina 12.7 percent.

⁴⁵⁷ Mandatory LTC benefits include nursing facility service for individuals 21 or over and home health care service for individuals entitled to nursing facility care through HCBS. Optional LTC benefits include ICF/MR services; inpatient facility services for mental diseases for people 65 and over; inpatient psychiatric hospital services for individuals under age 21; and home health care services.457 Under HCBS, Medicaid also provides optional services such as case management services, respiratory care services for ventilator-dependent individuals, personal care services, private duty nursing services, hospice services, services under a PACE program, and HCBS.

⁴⁵⁸ The Kaiser Commission on Medicaid and the Uninsured. (2003). Medicaid’s Role for People with Disabilities. P. 17.

⁴⁵⁹ Williams, B., Claypool, H., & Crowley, J.S. (2005). Navigating Medicare and Medicaid, 2005. A Resource Guide for People with Disabilities, Their Families, and Their Advocates. The Henry J. Kaiser Family Foundation.

⁴⁶⁰ Ibid., see P. 40 for detailed list of services under this category.

⁴⁶¹ Ibid., see P. 40 for detailed list of services under this category.

⁴⁶² Williams, B., Claypool, H., & Crowley, J.S. (2005). Navigating Medicare and Medicaid, 2005. A Resource Guide for People with Disabilities, Their Families, and Their Advocates. The Henry J. Kaiser Family Foundation.

⁴⁶³ Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker, E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How Medicaid Works: Program Basics. CRS Report for Congress. Congressional Research Service: The Library of Congress (RL32277). P. 2.

⁴⁶⁴ Ibid., 10.

⁴⁶⁵ Ibid., 2.

⁴⁶⁶ Ibid.,12

⁴⁶⁷ Congressional Budget Office. (2004). Financing Long-Term Care. Washington, DC: CBO. P. 1.

⁴⁶⁸ Smith, V.K., & Moody, G. (2005). Medicaid in 2005: Principles and Proposals for Reform. Prepared for the National Governors Association. P. 2

⁴⁶⁹ Ibid.

⁴⁷⁰ Holahan, J., & Ghosh, A. (2005). Understanding the Recent Growth in Medicaid Spending 2000–2003. Urban Institute Health Policy Center. Washington, DC.

⁴⁷¹ The Kaiser Commission on Medicaid and the Uninsured. (August 2003). Medicaid’s Role for People with Disabilities. P. 35.

⁴⁷² Ibid.

⁴⁷³ Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. Department of Psychiatry and Coleman Institute for Cognitive Disabilities, The University of Colorado. P. 48.

⁴⁷⁴ Grady, A., Hearne, J. Herz, E., Scott, C., Stone-Axelrad, J., & Tritz, K. (2005). Medicaid and SCHIP: The President’s 2005 Budget Proposals.

⁴⁷⁵ Ibid., 5–10.

⁴⁷⁶ Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker, E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How Medicaid Works: Program Basics. CRS Report for Congress. Congressional Research Service: The Library of Congress (RL32277).

⁴⁷⁷ Ibid.

⁴⁷⁸ The Kaiser Commission on Medicaid and the Uninsured. (August 2003). Medicaid’s Role for People with Disabilities. P. 13.

⁴⁷⁹ Ibid. When work income exceeds SSI eligibility rules and a person is no longer receiving SSI cash benefits but is still considered a “qualified severely impaired individual,” the person may still receive Medicaid if he or she meets four criteria: (1) continues to be blind or have a disabling impairment; (2) meets all other SSI eligibility requirements except for earnings; (3) would be seriously inhibited from continuing to work by the termination of eligibility for Medicaid services; and (4) earnings are not sufficient to provide a reasonable equivalent to the benefits available if he or she did not have SSI, state supplementary payments (where applicable), medical care, and publicly funded personal care.

⁴⁸⁰ Government Accountability Office. (June 2003). Medicaid and Ticket to Work. States’ Early Efforts to Cover Working Individuals with Disabilities. Washington, DC: GAO (GAO-03-587).

⁴⁸¹ Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. Department of Psychiatry and Coleman Institute for Cognitive Disabilities, The University of Colorado. P. 30.

⁴⁸² Ibid., 10.

⁴⁸³ Ibid., 15.

⁴⁸⁴ Ibid., 16

⁴⁸⁵ Eiken, S., & Burwell, B. (2004). Medicaid HCBS Waiver Expenditures, FY 1995 through FY 2001. Medstat Group, Inc. Cambridge, Massachusetts.

⁴⁸⁶ Ibid.

⁴⁸⁷ Ibid., 2.

⁴⁸⁸ Ibid., 24.

⁴⁸⁹ Ibid., 24.

⁴⁹⁰ Ibid., 27. Refers to research from Mank, D., Rhodes, E., & Bellamy, T. (1986). Four Supported Employment Alternatives. In Eds. W.E. Kiernan & J.A. Stark, Pathways to Employment for Adults with Developmental Disabilities. Baltimore: Brookes.

491 Ibid., 28, Table 9.

⁴⁹² Ibid., 31.
493 Ibid., 31.

⁴⁹⁴ Ibid., 31.

⁴⁹⁵ Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker, E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How Medicaid Works: Program Basics. CRS Report for Congress. Congressional Research Service: The Library of Congress (RL32277). Table 8. Total State and Federal Medicaid Payments by Basis of Eligibility, Type of Service, and as a Percentage of Total Payments, FY2002. P. 26.

⁴⁹⁶ Ibid. Payments by Basis of Eligibility, Type of Service, and as a Percentage of Total Payments, FY2002. P. 26.

⁴⁹⁷ Tritz, K. (2004). Dual Eligibles: Medicaid Expenditures for Prescription Drugs and Other Services. CRS Report for Congress. Congressional Research Services: The Library of Congress (RL31987).

⁴⁹⁸ McKinsey Global Institute. (2005). The Coming Demographic Deficit: How Aging Populations Will Reduce Global Savings. McKinsey Global Institute, McKinsey & Company. P. 4.

⁴⁹⁹ Ibid.

⁵⁰⁰ Peterson, P. (2004). Running on Empty: How the Democratic and Republican Parties Are Bankrupting Our Future and What Americans Can Do About It. New York: Farrar, Straus and Giroux. P. xi.

⁵⁰¹ Government Accountability Office. (February 2005). 21st Century Challenges: Reexamining the Base of the Federal Government. Washington, DC: GAO (GAO-05-325SP).

⁵⁰² 2005 Annual Report of the Board of Trustees of the Federal Old-Age and Survivors Insurance and Disability Insurance Trust Funds. Annual costs will exceed tax income starting in 2017, at which time the annual gap will be covered with cash from redeeming special obligations of the Department of Treasury, until these assets are exhausted in 2041. The open group unfunded obligation of Old-Age and Survivors Insurance and Disability Insurance over the 75-year period is $4 trillion in present value, $0.3 trillion more than the unfunded obligation estimated a year ago. (P. 2).

⁵⁰³ Peterson, P. (2004). Running on Empty: How the Democratic and Republican Parties Are Bankrupting Our Future and What Americans Can Do About It. New York: Farrar, Straus and Giroux

⁵⁰⁴ The Kaiser Commission on Medicaid and he Uninsured. (2003). Medicaid’s Role for People with Disabilities. P. 10.

⁵⁰⁵ Kotlikoff, L.H., & Burns, S. (2005). The Coming Generational Storm. What You Need to Know about America’s Economic Future. Cambridge, Massachusetts: MIT Press. P. 236.

⁵⁰⁶ www.who.int/inf-pr-2000/en/pr2000-life.html.

⁵⁰⁷ U.S. Department on Aging. (2000). A Profile of Older Americans: Administration on Aging. U.S. Department on Aging, U.S. Department of Health and Human Services.

⁵⁰⁸ U.S. Department of Health and Human Services. (January 2000). Healthy People 2010: Understanding and Improving Health. Washington, DC: HHS.

⁵⁰⁹ O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518).

⁵¹⁰ Government Accountability Office. (April 27, 2005). Long-Term Care Financing: Growing Demand and Cost of Services Are Straining Federal and State Budgets. Washington, DC: GAO (GAO-05-564T).

⁵¹¹ Ibid., 7.

⁵¹² Ibid., 8.

⁵¹³ Ibid., 10.

⁵¹⁴ O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518). P. 3.

⁵¹⁵ Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker, E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How Medicaid Works: Program Basics. CRS Report for Congress. Congressional Research Service: The Library of Congress (RL32277).

⁵¹⁶ NCB Development Corporation. (2004). Improving Long-term Care in America. Washington, DC: NCBDC.

⁵¹⁷ Allen, K.G. (2005). Long-Term Care Financing: Growing Demand and Cost of Services Are Straining Federal and State Budgets. Testimony before the Subcommittee on Health, Committee on Energy and Commerce, House of Representatives (GAO-05-564T). P. 6.

⁵¹⁸ Ibid., 6.

⁵¹⁹ Government Accountability Office. (February 2005). 21st Century Challenges: Reexamining the Base of the Federal Government. Washington, DC: GAO (GAO-05-325SP).

⁵²⁰ Ibid.

⁵²¹ Holtz,-Eakin, D. (April 19, 2005). CBO Testimony. The Cost and Financing of Long-Term Care Services before the Subcommittee on Health Committee on Ways and Means U.S. House of Representatives, Congressional Budget Office. P. 4.

⁵²² Government Accountability Office. (February 2005). 21st Century Challenges: Reexamining the Base of the Federal Government. Washington, DC: GAO (GAO-05-325SP).

⁵²³ O’Shaughnessy, C. (2003). Long-Term Care Chart Book: Persons Served, Payers and Spending. Congressional Research Service: The Library of Congress (RS21518). Pp. 3–5.

⁵²⁴ Government Accountability Office. (February 2005). 21st Century Challenges: Reexamining the Base of the Federal Government. Washington, DC: GAO (GAO-05-325SP).

⁵²⁵ Herz, E., Hearne, J., Stone-Axelrad, J., Tritz, K., Baumrucker, E., Scott, C., Peterson, C., Grady, A., & Rimkunas, R. (2005). How Medicaid Works: Program Basics. CRS Report for Congress. RL32277. Congressional Research Service: The Library of Congress. P. 24.

⁵²⁶ Tritz, K., & Lindley, M.(2004). Dual Eligibles: Medicaid Expenditures for Prescription Drugs and Other Services. CRS Report to Congress. Congressional Research Services. RL31987.

⁵²⁷ Peterson, C.L. (2004). Medicaid/SCHIP as Primary Source of Health Insurance During the Year. CRS Report for Congress. Congressional Research Service: The Library of Congress (RL32555).

⁵²⁸ Ibid.

⁵²⁹ Ibid., 7. The drop in wages was due to either having a wage reduction in their current job or taking a different job with a lower wage. Only 39 percent were linked to policyholders who worked for the entire year and did not experience a wage drop.

⁵³⁰ Ibid. Estimates used in this report are based on monthly Medicaid/SCHIP enrollment reported in the 2001 Medicaid Expenditure Panel Survey (MEPS).

⁵³¹ Shaprio, T.M. (2004). The Hidden Cost of Being African American. How Wealth Perpetuates Inequality. New York: Oxford University Press.

⁵³² Employee Benefit News. (February 2, 2003). A Federal Case for Long Term Care.

⁵³³ Testimony of Buck Stinson, President, Genworth Financial Inc., Long-Term Care Division. (April, 19, 200[?]). U.S. House of Representatives Subcommittee on Health of the Committee on Ways and Means Long-Term Care Hearing.

⁵³⁴ Peterson, C.L. (2004). Medicaid/SCHIP as Primary Source of Health Insurance During the Year. CRS Report for Congress. Congressional Research Service: The Library of Congress (RL32555). Quoted from Employer Health Benefits: 2003 Annual Survey. The Kaiser Family Foundation and Health Research and Educational Trust, 2003, P. 2.

⁵³⁵ Dorn, S. (2004). Towards Incremental Progress: Key Facts About Groups of Uninsured. Economic and Social Research Institute. Washington, DC: Employers of Small Business.

⁵³⁶ Ibid. Fact Sheet: 2004. $15,670 a year for a family of three—over half are uninsured (51.3%).

⁵³⁷ Stone, J.L. (2002). Long-Term Care: Nursing and Paraprofessional Workforce Issues. CRS Report to Congress. Congressional Research Service: The Library of Congress (RL31090).

⁵³⁸ Stinson, B. (April 19, 2005). Testimony in the U.S. House of Representatives: Subcommittee on Health of the Ways and Means Long-Term Care Hearing. Genworth Financial, Inc., Long-Term Care Division.

⁵³⁹ Long-Term Care Division. (2005). Genworth Long-Term Care and Alzheimer’s Disease in America: A Retrospective: Long-Term Care Insurance Products are Underwritten by General Electric Capital Assurance Company and, in New York, by GE Capital Life Assurance Company of New York. Richmond, VA: Long-Term Care Division.

⁵⁴⁰ Stinson, B. (April 19, 2005). Testimony in the U.S. House of Representatives: Subcommittee on Health of the Ways and Means Long-Term Care Hearing. Genworth Financial, Inc., Long-Term Care Division.

⁵⁴¹ Ibid., 6.

⁵⁴² Trautwein, J. (April 19, 2005). Testimony from the National Association of Health Underwriters to the United States House of Representatives. Ways and Means Committee. Arlington, VA.

⁵⁴³ Meiners, M.R. (2005). Testimony before the Subcommittee on Health of the House Committee on Ways and Means. Hearing on Issues Relating to Long-Term Care. George Mason University. Center for Health Policy, Research and Ethics.

⁵⁴⁴ Ibid., 3–10.

⁵⁴⁵ Society of Actuaries Disability Chart Book Task Force. (2004). Disability Insurance: A Missing Piece in the Financial Security Puzzle. America’s Health Insurance Plans. The Actuarial Foundation.

⁵⁴⁶ Feder, J. (2005). Testimony before the Subcommittee on Health, Committee on Ways and Means, U.S. House of Representatives. Long- Term Care.

⁵⁴⁷ Congressional Budget Office. (November 2004). Disability and Retirement: The Early Exit of Baby Boomers from the Labor Force. Washington, DC: CBO.

⁵⁴⁸ Society of Actuaries Disability Chart Book Task Force. (2004). Disability Insurance: A Missing Piece in the Financial Security Puzzle. America’s Health Insurance Plans. The Actuarial Foundation.

⁵⁴⁹ Stone, J.L. (December 18, 2002). Long-Term Care: Nursing and Paraprofessional Work Force Issues. Congressional Research Service. P. 3.

⁵⁵⁰ National Clearinghouse on Direct Care. (September 2004). Who are direct-care workers? National Clearinghouse on Direct Care Workforce Fact Sheet. P. 1.

⁵⁵¹ Turnham, H. (May 2004). Supporting the In-Home Workforce. National Governors Association’s Aging with Health and Dignity Forum. P. 1.

⁵⁵² Holzer, H. (December 2002). Modeling the Future Supply and Demand for Long Term Care Workers. Institute for the Future of Aging Services. P. 3.

⁵⁵³ Friedman, R.B. (July 2004). Caregivers and Long-Term Care Needs of the 21st Century: Will public policy meet the challenge? Long-Term Care Project, Georgetown University. P. 1.

⁵⁵⁴ Ibid., 6.

⁵⁵⁵ Holzer, H. (December 2002). Modeling the Future Supply and Demand for Long Term Care Workers. Institute for the Future of Aging Services. P. 1.

⁵⁵⁶ National Clearinghouse on Direct Care. (September 2004). Who are direct-care workers? National Clearinghouse on Direct Care Workforce Fact Sheet. P. 1.

⁵⁵⁷ Holzer, H. (December 2002). Modeling the Future Supply and Demand for Long Term Care Workers. Institute for the Future of Aging Services. P. 2.

⁵⁵⁸ Stone, J.L. (December 18, 2002). Long-Term Care: Nursing and Paraprofessional Work Force Issues. Congressional Research Service. P. 4.

⁵⁵⁹ Ibid., 5.

⁵⁶⁰ National Clearinghouse on Direct Care. (September 2004). Who are direct-care workers? National Clearinghouse on Direct Care Workforce Fact Sheet. P. 2.

⁵⁶¹ Holzer, H. (December 2002). Modeling the Future Supply and Demand for Long Term Care Workers. Institute for the Future of Aging Services. P. 2.

⁵⁶² National Clearinghouse on Direct Care. (September 2004).Who are direct-care workers? National Clearinghouse on Direct Care Workforce Fact Sheet. P. 2.

⁵⁶³ Ibid.

⁵⁶⁴ Holzer, H. (December 2002). Modeling the Future Supply and Demand for Long Term Care Workers. Institute for the Future of Aging Services. P. 8.

⁵⁶⁵ Ibid., 8.

⁵⁶⁶ Ibid.

⁵⁶⁷ National Council on Disability. (2005). Consumer-Directed Health Care: How Well Does It Work? Washington, DC: NCD. P. 10.

⁵⁶⁸ Lutzky, S., Alecxih, L.M., Duffy, J., and Neill, C. (June 15, 2000). Review of the Medicaid 1915(c) Home- and Community- Based Services Waiver Program Literature and Program Data. The Lewin Group. P. 24.

⁵⁶⁹ National Council on Disability. (2005). Consumer-Directed Health Care: How Well Does It Work? Washington, DC: NCD. P. 10.

⁵⁷⁰ Tritz, K. (February 27, 2004). Long-Term Care: Consumer Directed Services under Medicaid. P. 10.

⁵⁷¹ Ibid., 7.

⁵⁷² National Council on Disability. (2005). Consumer-Directed Health Care: How Well Does It Work? Washington, DC: NCD. P. 74.

⁵⁷³ Tritz, K. (February 27, 2004). Long-Term Care: Consumer Directed Services under Medicaid. P. 26.

⁵⁷⁴ Ibid., 27.

⁵⁷⁵ Ibid., 31.

⁵⁷⁶ Lutzky, S., Alecxih, L.M., Duffy, J., and Neill, C. (June 15, 2000). Review of the Medicaid 1915(c) Home and Community Based Services Waiver Program Literature and Program Data. The Lewin Group. P. 26.

⁵⁷⁷ Spector, W.D., Shaffer, T.J., Hodlewsky, R.T., De La Mare, J.J., & Rhoades, J.A. (June 2000). Future Directions for Community-Based Long Term Care Health Services Research. P. 2–3.

⁵⁷⁸ United Cerebral Palsy Research and Educational Foundation. (May 2004). Evaluation of the Child Suspected of Having Cerebral Palsy.

⁵⁷⁹ United Cerebral Palsy Research and Educational Foundation. (October 2002). Cerebral Palsy – Facts and Figures.

⁵⁸⁰ United Cerebral Palsy Research and Educational Foundation. (May 2004). Evaluation of the Child Suspected of Having Cerebral Palsy.

⁵⁸¹ Estimate by Supervisor in the Bennington, VT, Office of Economic Services based on two-person family with no income.

⁵⁸² Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the State in Developmental Disabilities. American Association on Mental Retardation. P. 25.

⁵⁸³ Bascom, J.E. (January 2004). Annual Report 2004. Vermont Department of Developmental and Mental Health Services.

⁵⁸⁴ Estimate by Supervisor in the Bennington, VT, Office of Economic Services based on two-person family with no income and no consideration of other expenses.

⁵⁸⁵ Ireys, H., Anderson, G., Han C., and Neff, J. (May 22, 1996). Cost of Care for Medicaid Enrolled Children with Selected Disabilities. Johns Hopkins University, U.S. Department of Health and Human Services. P. 8.

⁵⁸⁶ SSA estimated childhood benefit would be just for Crystal and would reduce her TANF benefits total, because it is a similar benefit to SSI.

⁵⁸⁷ United Cerebral Palsy Research and Educational Foundation. (September 2004). Aging with Cerebral Palsy III.

⁵⁸⁸ Honeycutt, A., et al. (January 2004). Economic Costs Associated with Mental Retardation, Cerebral Palsy, Hearing Loss and Vision Impairment – United States, 2003. National Center on Birth Defects and Developmental Disabilities, CDC.

⁵⁸⁹ National Institute of Mental Health (NIMH). (2002). Schizophrenia.

⁵⁹⁰ Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. American Association on Mental Retardation.

⁵⁹¹ Ibid.

⁵⁹² Wisconsin Department of Health and Family Services. (2004). Wisconsin’s Adult Mental Health Plan. P. 69.

⁵⁹³ Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. American Association on Mental Retardation. P. 11.

⁵⁹⁴ Crowley, J., & Elias, R. (August 2003). Medicaid’s Role for People with Disabilities. The Kaiser Commission on Medicaid and the Uninsured. P. 13.

⁵⁹⁵ National Center for Health Statistics. (2002). Health, United States, 2002. National Center for Health Statistics, CDC. P. 293.

⁵⁹⁶ Department of Health and Family Services. (2004). Wisconsin’s Adult Mental Health Plan. P. 69.

⁵⁹⁷ Ibid., 69.

⁵⁹⁸ Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. American Association on Mental Retardation. P. 11.

⁵⁹⁹ Crowley, J., & Elias, R. (August 2003). Medicaid’s Role for People with Disabilities. The Kaiser Commission on Medicaid and the Uninsured. P. 13.

⁶⁰⁰ National Center for Health Statistics. (2002). Health, United States, 2002. National Center for Health Statistics, CDC. P. 293.

⁶⁰¹ American Association on Mental Retardation Web site, www.aamr.org.

⁶⁰² Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. American Association on Mental Retardation. P. 24.

⁶⁰³ Massachusetts Department of Education. (August 27, 2004). School Finance: Statistical Comparison. Available at: www.finance1.doe.mass.edu.

⁶⁰⁴ Crowley, J., & Elias, R. (August 2003). Medicaid’s Role for People with Disabilities. The Kaiser Commission on Medicaid and the Uninsured. P. 13.

⁶⁰⁵ Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. American Association on Mental Retardation. P. 11.

⁶⁰⁶ National Center for Health Statistics. (2002). Health, United States, 2002. National Center for Health Statistics, CDC. P. 11.

⁶⁰⁷ Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. American Association on Mental Retardation. P. 26.

⁶⁰⁸ Ibid.

⁶⁰⁹ Karan, O., el al. (1992). Supported Living: Rethinking the rules of residential services. AAMR News and Notes. P. 5.

⁶¹⁰ Rizzolo, M.C., Hemp, R., Braddock, D., & Pomeranz-Essley, A. (2004). The State of the States in Developmental Disabilities. American Association on Mental Retardation. P. 32.

⁶¹¹ Ibid., 28.

⁶¹² Ibid., 11.

⁶¹³ Honeycutt, A., et al. (January 2004). Economic Costs Associated with Mental Retardation, Cerebral Palsy, Hearing Loss and Vision Impairment – United States, 2003. National Center on Birth Defects and Developmental Disabilities, CDC.

⁶¹⁴ National Institute of Neurological Disorders and Stroke. (July 2001). NINDS Spinal Cord Injury Information Page. Available at: www.ninds.nih.gov.

⁶¹⁵ Spinal Cord Injury Information Network. (August 2004). National Spinal Cord Injury Database. Available at: www.spinalcord.uab.edu.

⁶¹⁶ Colorado Department of Human Services. (November 2003). Department Strategic Plan FY 2004–05. 1-2-25.

⁶¹⁷ Ibid., 1-2-87.

⁶¹⁸ Social Security Administration Research and Statistics data. www.ssa.gov

⁶¹⁹ Ibid.

⁶²⁰ Colorado Division of Vocational Rehabilitation. (July 2004). State Plan Updates 2005. Attachment 4.12(a). P. 3.

⁶²¹ Colorado Department of Human Services. (November 2003). Department Strategic Plan FY 2004–05. 1-2-86.

⁶²² Ibid., 1-2-87.

⁶²³ National Center for Health Statistics. (2002). Health, United States, 2003. National Center for Health Statistics, CDC. P. 11.

⁶²⁴ Spinal Cord Injury Information Network. (August 2004). National Spinal Cord Injury Database. Available at: www.spinalcord.uab.edu.

⁶²⁵ Ibid.

⁶²⁶ Social Security Online, Disability Planner, Estimated Benefits, Quick Calculator, www.socialsecurity.gov.

⁶²⁷ Crowley, J., & Elias, R. (August 2003). Medicaid’s Role for People with Disabilities. The Kaiser Commission on Medicaid and the Uninsured. P. 13.

⁶²⁸ Miller, E.A. (January 22, 2001). Federal and State Initiatives to Integrate Acute and Long Term Care: Issues and Profiles. CRS Report to Congress. Washington, DC: Congressional Research Service (RL30813). P. 4.

⁶²⁹ Lutzky, S., Alecxih, L.M., Duffy, J., and Neill, C. (June 15, 2000). Review of the Medicaid 1915(c) Home and Community Based Services Waiver Program Literature and Program Data. The Lewin Group. P. 12.

⁶³⁰ Social Security Administration, Research and Statistics. www.ssa.gov.

⁶³¹ State Health Facts. www.statehealthfacts.org.

⁶³² Congressional Budget Office (April 2004). Financing Long Term Care for the Elderly. Congressional Budget Office Paper. P. iii.

⁶³³ Ibid., 34.

⁶³⁴ Alzheimer’s Disease.com. (2004). Stages of Alzheimer’s Disease.

⁶³⁵ Ibid.

⁶³⁶ Long-Term Care Report. (June 2004). Report to the U.S. Senate Special Committee on Aging. 81-752.

⁶³⁷ Ibid.

⁶³⁸ Boyle, R., Pande, N., & Lynch, L. (2004). The Guide to Medi-Cal Programs. Second Edition. Oakland, CA: California HealthCare Foundation.

⁶³⁹ Alzheimer’s Disease.com. (2004). Stages of Alzheimer’s Disease.

⁶⁴⁰ MS State Department of Health. (2002).

⁶⁴¹ Ibid.

⁶⁴² Economic Costs of Diabetes in the U.S. in 2002. Diabetes Care. 26: 917-932. 2003.

⁶⁴³ Ibid.

⁶⁴⁴ Mississippi Division of Medicaid. (September 2004).

⁶⁴⁵ U.S. Department of Health and Human Services. (2000). Health Care Financing Review. Medicare and Medicaid Statistical Supplement. Washington, DC: HHS. P. 332.

⁶⁴⁶ Ibid., 332.

⁶⁴⁷ Congressional Budget Office. (October 13, 2004). An Analysis of the Literature on Disease Management Programs. Washington, DC: CBO.

⁶⁴⁸ National Cooperative Bank–Development Corporation. (August 12, 2004). Federal Health Programs Grid.

⁶⁴⁹ Government Accountability Office. (June 2003). Long-Term Care: Federal Oversight of the Growing Medicaid Home- and Community-Based Waivers Should Be Strengthened. Washington, DC: GAO. P. 5.

⁶⁵⁰ Ibid., 6.

⁶⁵¹ Tritz, K. (February 27, 2004). Long-Term Care: Consumer Directed Services under Medicaid. P. 14.

⁶⁵² National Council on Disability. (2005). Consumer-Directed Health Care: How Well Does It Work? Washington, DC: NCD. P. 69.

⁶⁵³ Roig-Franzia, M. (April 1, 2005). Long Legal Battle Over as Schiavo Dies. Washington Post, A1, A13.

⁶⁵⁴ Smith, V., Kaye, N., Chang, D., Bonney, J., Milligan, C., Milne, D., Mollica, R., & Shirk, C. (2005). Making Medicaid Work for the 21st Century. Portland, ME: National Academy of State Health Policy.

⁶⁵⁵ Ibid., 13.

⁶⁵⁶ Ibid., 13.

⁶⁵⁷ Ibid., 15.

⁶⁵⁸ Ibid., 20.

⁶⁵⁹ Ibid., 30.

⁶⁶⁰ Ibid., 34.

⁶⁶¹ Ibid., 35.

⁶⁶² Ibid., 35.

⁶⁶³ Ibid., 55.

⁶⁶⁴ Ibid., 56.

⁶⁶⁵ Ibid., 77.

⁶⁶⁶ National Governors Association. (Adopted 2003). Chairman’s Message. Retrieved August 13, 2004. Available at: www.subnet.nga.org/ci/message.html.

⁶⁶⁷ Ibid.

⁶⁶⁸ Ibid.

⁶⁶⁹ National Governors Association. (Adopted Winter Meeting 2003; Revised Winter Meeting 2005 (formerly Policy HR-43)). Policy Position Detail; HHS-27. Medicaid Reform Principles Policy. Retrieved August 13, 2004. Available at: www.nga.org/nga/legislativeUpdate/1,1169,C_POLICY_POSITION^D_5113,00.html.

⁶⁷⁰ Ibid.

⁶⁷¹ Ibid.

⁶⁷² Executive Office of the United States. (2004-6). President’s Budget Proposals FY 04, 05, 06. Retrieved April 1, 2005. Available at: www.gpoaccess.gov/usbudget/browse.html.

⁶⁷³ Smith, V.K., & Moody, G. (February 2005). Medicaid in 2005: Principles & Proposals for Reform. Prepared for the National Governor’s Association. Retrieved April 11, 2005. Available at: www.nga.org/cda/files/0502MEDICAID.pdf.

⁶⁷⁴ Ibid., 9.

⁶⁷⁵ Ibid., 9.

⁶⁷⁶ Ibid., 10.

⁶⁷⁷ National Governor’s Association. (2004). A Lifetime of Health and Dignity: 20 Actions Governors Can Take. Retrieved August 13, 2004. Available at: www.subnet.nga.org/ci/5top20.html.

⁶⁷⁸ Ibid.

⁶⁷⁹ National Council on Disability. (2004). Livable Communities Report.

⁶⁸⁰ IRS.gov and Mastermymoney.org.

⁶⁸¹ www.careeronestop.org.

⁶⁸² Eichner, J., & Blumenthal, D., Eds. (2003). Medicare and Chronic Care in the 21st Century: Building a Better Care System. Washington, DC: National Academy of Social Insurance. P. 1.

⁶⁸³ Ibid., 2.

⁶⁸⁴ Ibid., 2.

⁶⁸⁵ Ibid., 9.

⁶⁸⁶ Ibid., 8.

⁶⁸⁷ Ibid., 12.

⁶⁸⁸ Ibid., 49.

⁶⁸⁹ Ibid., 50.

⁶⁹⁰ Ibid., 50.

⁶⁹¹ CMS Medicare Modernization Update Web site. Available at: www.cms.hhs.gov/mmu/default.asp.

⁶⁹² Ibid., 51.

⁶⁹³ Ibid., 53.

⁶⁹⁴ Ibid., 54.

⁶⁹⁵ Ibid., 55.

⁶⁹⁶ Ibid., 56.

⁶⁹⁷ Ibid., 56.

⁶⁹⁸ Congressional Budget Office. (2004). Financing Long-Term Care for the Elderly. Washington, DC: Government Printing Office. P. 1.

⁶⁹⁹ Ibid., 2.

⁷⁰⁰ Ibid., 2.

⁷⁰¹ Ibid., 16.

⁷⁰² Ibid., 16.

⁷⁰³ Ibid., 23.

⁷⁰⁴ Ibid., 27.

⁷⁰⁵ Ibid., 27.

⁷⁰⁶ Stone-Axelrad, J. (2004). Long-Term Care Insurance Partnership Program. CRS Report to Congress. Congressional Research Service: The Library of Congress (RL32610).

⁷⁰⁷ Ibid., 30.

⁷⁰⁸ Ibid. 29.

⁷⁰⁹ Ibid., 31.

⁷¹⁰ Ibid., 31.

⁷¹¹ Ibid., 24.

⁷¹² Ibid., 24.

⁷¹³ Ibid., 25.

⁷¹⁴ ADAPT. Why direct action? Retrieved April 8, 2005. Available at: www.adapt.org/back.htm.

⁷¹⁵ 40 B.C.L.Rev. 1221, Boston College Law Review, September, 1999, Note, *1221 “Don’t Tread on the ADA”: Olmstead v. L.C. Ex Rel. Zimring and the Future of Community Integration for Individuals with Mental Disabilities, Joanne Karger.

⁷¹⁶ S.971, introduced May 1, 2003.

⁷¹⁷ Ibid.

⁷¹⁸ Section 1935.

⁷¹⁹ Ibid.

⁷²⁰ Ibid.

⁷²¹ Ibid.

⁷²² Section 101.

⁷²³ Ibid.

⁷²⁴ American Association of Retired Persons (2005). The Policy Book. Washington, DC. P. 7-1.

⁷²⁵ Ibid., 7-1.

⁷²⁶ Ibid., 7-2.

⁷²⁷ Ibid., 7-3.

⁷²⁸ Ibid., 7-4.

⁷²⁹ Ibid., 7-15.

⁷³⁰ Ibid., 7-16.

⁷³¹ Ibid., 7-16.

⁷³² Ibid., 7-19.

⁷³³ Ibid., 7-27.

⁷³⁴ Ibid., 7-27.

⁷³⁵ Ibid., 7-28.

⁷³⁶ Ibid., 7-28.

⁷³⁷ Ibid., 7-31.

⁷³⁸ Ibid., 7-33.

⁷³⁹ Ibid., 7-37.

⁷⁴⁰ Ibid., 7-74.

⁷⁴¹ Ibid., 7-75.

⁷⁴² Ibid., 7-76.

⁷⁴³ Ibid., 7-87.

⁷⁴⁴ Ibid., 7-88.

⁷⁴⁵ Ibid., 9-1.

⁷⁴⁶ Ibid., 9-9.

⁷⁴⁷ Ibid., 9-9.

⁷⁴⁸ Government Accountability Office. (February 2005). 21st Century Challenges: reexamining the base of the federal government. Washington, DC: U.S. Government Printing Office. P. 10.

⁷⁴⁹ Ibid., 5.

⁷⁵⁰ Ibid., 12.

⁷⁵¹ Ibid., 11.

⁷⁵² Ibid., 11.

⁷⁵³ Ibid., 12.

⁷⁵⁴ Ibid., 12.

⁷⁵⁵ Ibid., 11.

⁷⁵⁶ These programs allow states to waive usual Medicaid rules about eligibility “entitlement” for Medicaid services. Rather than having to provide HCBS services to any person who meets Medicaid eligibility requirements, a state may create a program for specific populations, such as aged people, traumatic brain injury individuals, or people with MR/DD who meet the income eligibility.

⁷⁵⁷ Information was collected from state agency Web sites, planning documents, Olmstead and task force reports, and legislative budget and research documents. Additional information was obtained from state agency officials through telephone and e-mail communications. Many states have created task forces to consider strategies for addressing concerns raised by the 1999 Supreme Court Olmstead decision that inappropriate institutionalization of people with disabilities constitutes discrimination as defined by ADA. Telephone interviews were conducted with several key stakeholders in each state. (Names and titles of these stakeholders are provided in Appendix 4.A). Selected comments from these interviews appear in the state case studies. The views and recommendations of these stakeholders on needed federal reforms are also summarized in the conclusion to this chapter.

⁷⁵⁸ Mollica, R. (November 2003). “Building Nursing Home Transition into a Balanced Long Term Care System: The Washington Model.” National Academy for State Health Policy for the Community Living Exchange Collaborative.

⁷⁵⁹ Department of Social and Health Services. (September 2002). Facing the Future: The State of Human Services in Washington: Part 2.

⁷⁶⁰ U.S. Census Bureau. Census 2000 Summary File 1; 1990 Census of Population. General Population Characteristics, United States. Also, Census Bureau. 2004 State and County Quick Facts. Washington Quick Facts.

⁷⁶¹ Washington Quick Facts.

⁷⁶² Personal communication with staff, Aging and Disability Services Administration, June 2004.

⁷⁶³ RDA Client Services Database, Research and Data Analysis. Department of Social and Health Services, January 2004. Personal communications with department staff, June 2004.

⁷⁶⁴ U. S. Centers for Medicare and Medicaid Services. (January 2003). Promising Practices in Home- and Community-Based Services. “Washington: Facilitating Nursing Facility to Community Transitions.” Washington, DC: CMS.

⁷⁶⁵ Mollica, R. (November 2003). “Building Nursing Home Transition into a Balanced Long Term Care System: The Washington Model.” National Academy for State Health Policy for the Community Living Exchange Collaborative.

⁷⁶⁶ Personal communication with staff, Aging and Disability Services Administration, June 2004.

⁷⁶⁷ Human Services Research Institute. (2004). “Home and Community Services Litigation Status Report: October 2004.”

⁷⁶⁸ Ibid.

⁷⁶⁹ Developmental Disabilities Strategies for the Future Stakeholder Workgroup. (December 2002). “Developmental Disabilities Strategies for the Future: Long Range Plan. Phase 3, Final Report.”

⁷⁷⁰ Joint Legislative Audit and Review Committee. (April 21, 2004). “DSHS Responses to JLARC Studies of the Division of Developmental Disabilities.” Status Report 04-07.

⁷⁷¹ Department of Social and Health Services Report to the Legislature. (December 2003). “The Impact of the Creation of the Aging and Disability Services Administration.”

⁷⁷² “Facing the Future: Part 3.”

⁷⁷³ National Conference of State Legislatures. (2003). “The States’ Response to the Olmstead Decision: Washington.”

⁷⁷⁴ Joint Legislative Audit and Review Committee. (January 29, 2004). “DSHS Mental Illness Prevalence Study: Follow-Up to JLARC 2000 Mental Health System Performance Audit.” Report 04-1.

⁷⁷⁵ Adair, T., & Toulon, A. (March 2003) “Assessing System of Care for Older Adults and Adults with Co-Occurring Medical and Behavioral Disorders Currently in Washington State Psychiatric Hospitals or at Risk of Hospitalization.” Systems Change Grant Report.

⁷⁷⁶ Ibid.

⁷⁷⁷ Mollica, R. (2002). “State Assisted Living Policy: 2002.” National Academy for State Health Policy.

⁷⁷⁸ Government Accountability Office. (April 30, 2004). “Assisted Living: Examples of State Efforts to Improve Protections.” Washington, DC: GAO (GAO-04-684).

⁷⁷⁹ Ibid.

⁷⁸⁰ National Conference of State Legislatures. (2003). “The States’ Response to the Olmstead Decision: Washington.”

⁷⁸¹ Joint Legislative Audit and Review Committee. (April 21, 2004). “Home Care Quality Authority Performance Measures and Data Collection Plan.”

⁷⁸² Thomas, R. (March 22, 2004). “Home-Care Union Blended Force, Finesse to Win Gains.” The Seattle Times.

⁷⁸³ Aging and Adult Services Administration. (January 2004). “Fact Sheet: Informal/Family Caregivers.” Department of Social and Health Services.

⁷⁸⁴ Feinberg, L.F., et al. (November 2002). “Family Caregiver Support: Policies, Perceptions and Practices in 10 States Since Passage of the National Family Caregiver Support Program.”

⁷⁸⁵ Joint Legislative Audit and Review Committee. (January 7, 2004). “Washington Medicaid Study.” Washington Legislature.

⁷⁸⁶ Ibid. Department of Social and Health Services. (Spring 2003). “The Medicaid Integration Partnership: An Update.”

⁷⁸⁷ www1.dshs.wa.gov/olmstead/index.htm

⁷⁸⁸ Profile of General Demographic Characteristics for the United States: 1999-2001; poverty data is from the Current Population Survey, U.S. Bureau of the Census.

⁷⁸⁹ Wasserman, J. (January 2004). “Shaping the Future of Long Term Care and Independent Living, 2003-2013.” Department of Aging and Disabilities.

⁷⁹⁰ This history is described in “Vermont’s Home- and Community-Based Services System.” Medstat. 2003.

⁷⁹¹ Vermont Agency of Human Services. (February 20, 2004). February Reorganization Report.

⁷⁹² Vermont Agency of Human Services. (January 2004). Reorganization Report.

⁷⁹³ Vermont Agency of Human Services. (May 24, 2004). Request for No-Cost Extension. Real Choice System Change Grant.

⁷⁹⁴ Medstat.

⁷⁹⁵ Ibid.

⁷⁹⁶ Wasserman, J. (January 2004). “Shaping the Future of Long Term Care.”

⁷⁹⁷ Ibid.

⁷⁹⁸ The University of Minnesota Research and Training Center on Community Living and The Lewin Group. (August 21–25, 2000). “Medicaid Home and Community-Based Services in Vermont.” Site visit.

⁷⁹⁹ Bascom, J.E. (January 2004). Annual Report 2004. Vermont Department of Developmental and Mental Health Services.

⁸⁰⁰ Department of Developmental and Mental Health Services. (July 2003).The Statewide System of Care Plan for Adult Mental Health in Vermont, Update: Fiscal Years 2003–04.

⁸⁰¹ Ibid.

⁸⁰² The material on housing options is from J. Wasserman (2004), “Shaping the Future of Long Term Care.”

⁸⁰³ National Conference of State Legislatures. (April 19, 2004). “Better Jobs, Better Care: Retaining Long-Term Care Workers.” State Health Notes.

⁸⁰⁴ “Wage pass-through” refers to a legislative action that provides increased reimbursement for nursing homes but mandates that part or all of the increase be spent on increased wages or benefits for workers.

⁸⁰⁵ A four-year, $15.5 million research and demonstration program funded by the Robert Wood Johnson Foundation and the Atlantic Philanthropies

⁸⁰⁶ “Results of the 2003 National Survey of State Initiatives.”

⁸⁰⁷ “Vermont Consumer Advocates Align the Stars for Direct Care Worker Advances.” Insights. Better Jobs/Better Care newsletter, 4(Summer 2004).

⁸⁰⁸ Bascom, J.E. (January 2004). Annual Report 2004. Vermont Department of Developmental and Mental Health Services.

⁸⁰⁹ Medstat. (2003). “Vermont’s Home and Community Based Service System.”

⁸¹⁰ Medicaid rules prohibit paying spouses and parents of minor children in consumer-directed programs.

⁸¹¹ Department of Aging and Disabilities. (October 1, 2003). “Vermont Long-Term Care Plan.”

⁸¹² The one exception is that participants who choose home care may retain up to $10,000 in assets.

⁸¹³ Bascom, J.E. (January 2004). Annual Report 2004. Division of Developmental Services, Department of Developmental and Mental Health Services.

⁸¹⁴ U.S. Centers for Medicare and Medicaid. (March 24–28, 2003). “Home- and Community-Based Waiver Review: Vermont. Target Group: Individuals with Mental Retardation and Developmental Disabilities.” Onsite Review. (#0047.90.R3).

⁸¹⁵ Intermediate Care Facility for Persons with Mental Retardation/Developmental Disabilities.

⁸¹⁶ Wasserman, J. (January 2004). “Shaping the Future of Long Term Care.”

⁸¹⁷ The U.S. Supreme Court ruled in 1999 that states would be violating ADA if they provide care to people with disabilities in institutional settings when they could be more appropriately served in home- or community-based settings. Most states have responded, at least initially, by preparing plans that lay out goals and actions for expanding HCBS for people with disabilities

⁸¹⁸“Vermont’s Response to Questions from 1115 Federal Review Team: Responses to December 2003 Questions from CMS.” Available at: www.dad.state.vt.us/1115waiver/11204Responsespdf.

⁸¹⁹ Instrumental activities of daily living, such as shopping or telephoning.

⁸²⁰ Minnesota Department of Human Services. (2004). “Status of Long-Term Care in Minnesota, 2003.” 2004 Legislative Reports.

⁸²¹ Minnesota Department of Administration. Minnesota State Demographic Center. (February 2004). “Elderly Minnesotans: A 2000 Census Portrait.” Population Notes.

⁸²² U.S. Census Bureau 2000 population.

⁸²³ www.budget.state.mnus/budget/profiles/230482.pdf.

⁸²⁴ Minnesota Department of Human Services. (July 2003). “DSH Priorities.”

⁸²⁵ Minnesota Department of Human Services. (2004). “Status of Long-Term Care in Minnesota, 2003.” 2004 Legislative Reports.

⁸²⁶ Ibid.

⁸²⁷ Personal communication with Department of Human Services staff, June 2004.

⁸²⁸ State of Minnesota Long-Term Care Task Force. (January 2001). “Reshaping Long-Term Care in Minnesota.” Final Report.

⁸²⁹ Ibid.

⁸³⁰ It should be noted that the task force’s work and its subsequent recommendations were directed at issues affecting the elderly, not all people with disabilities

⁸³¹ Fox-Grage, W., et al. (2003). “States’ Response to the Olmstead Decision: How Are States Complying?” National Conference of State Legislatures.

⁸³² State of Minnesota Long-Term Care Task Force. (February 2002). “Keeping the Vision.” Report to the Minnesota Legislature: Progress on Reshaping Long-Term Care in Minnesota.

⁸³³ Services that are beyond the scope or variety of those available under the state’s traditional Medicaid State Plan.

⁸³⁴ Punelli, D. (February 2004). “Medicaid Home and Community-Based Waiver Programs.” Information Brief. Minnesota House of Representatives Research Department.

⁸³⁵ Ibid.

⁸³⁶ Minnesota Department of Human Services. (2004). “Status of Long-Term Care in Minnesota, 2003.” 2004 Legislative Reports.

⁸³⁷ Punelli, D. (February 2004). “Medicaid Home and Community-Based Waiver Programs.” Information Brief. Minnesota House of Representatives Research Department.

⁸³⁸ Medicaid Home Program Evaluation Division. Minnesota Office of the Legislative Auditor. (February 18, 2004). “Medicaid Home and Community-Based Waiver Services for Persons with Mental Retardation and or Related Conditions.

⁸³⁹ Ibid.

⁸⁴⁰ Punelli, D. (February 2004). “Medicaid Home and Community-Based Waiver Programs.” Information Brief. Minnesota House of Representatives Research Department.

⁸⁴¹ Ibid.

⁸⁴² Personal communication with Mental Health Division officials.

⁸⁴³ Department of Human Services Web site. “Adult Mental Health Initiatives: Focusing on the Community.” Available at: www.dhs.state.mn.us/main/groups/disabilities/documents/pub/dhs_id_000085.hcsp.

⁸⁴⁴ Ibid.

⁸⁴⁵ Minnesota Department of Human Services. (2004). “Status of Long-Term Care in Minnesota, 2003.” 2004 Legislative Reports. Personal communication with Department of Human Services staff, June 2004.

⁸⁴⁶ Ibid.

⁸⁴⁷ www.dhs.state.mn.us/main/groups/economic_support/documents/pub/DHS_id_026695.pdf.

⁸⁴⁸ State of Minnesota Long-Term Care Task Force. (January 2001). “Reshaping Long-Term Care in Minnesota.” Final Report.

⁸⁴⁹ Minnesota Department of Human Services. (2004). “Status of Long-Term Care in Minnesota, 2003.” 2004 Legislative Reports. Personal communication with Department of Human Services staff, June 2004.

⁸⁵⁰ Centers for Medicare and Medicaid Services. U.S. Department of Health and Human Services. (October 2003). Real Choice Systems Change Grant Program: First Year Report. (October 1, 2001–September 30, 2002).

⁸⁵¹ Minnesota Department of Human Services. (September 7, 2004). “Implementation of Consumer-Directed Supports Across All Waivers, MSHO and MnDHO.” Bulletin #04-56-07.

⁸⁵² Ibid.

⁸⁵³ Compendium of the Systems Change Grants for Community Living. Community-Integrated Personal Assistance Services and Supports Grants: Minnesota. Home and Community Based Services Resources Network. www.hcbs.org/ systems_change/minnesota.htm.

⁸⁵⁴ Anderson, W., Wiener, J., Greene, A., and O’Keeffe, J. (April 2004). “Direct Service Workforce Activities of the Systems Change Grantees: Final Report.” U.S. Centers for Medicare and Medicaid.

⁸⁵⁵ Minnesota Department of Human Services. (2004). “Status of Long-Term Care in Minnesota, 2003.” 2004 Legislative Reports.

⁸⁵⁶ Ibid.

⁸⁵⁷ Minnesota Department of Human Services. (October 2003). “Minnesota Long-Term Care Reform: Maximizing Non-Governmental Resources.” Fact Sheet.

⁸⁵⁸ Minnesota Department of Human Services. (2004). “Status of Long-Term Care in Minnesota, 2003.” 2004 Legislative Reports.

⁸⁵⁹ Testimony of Paul Strebe, Minnesota Department of Employee Relations. (2004). Summary of March 5, 2004, Briefing. Series of Policy Briefings. Department of Human Services.

⁸⁶⁰ Minnesota Department of Employee Relations. (2004). “Long-Term Care Insurance Options.”

⁸⁶¹ Defined as Medicaid funding following an individual who moves from a nursing facility into the community.

⁸⁶² U.S. Census Bureau. (2004). 2004 State and County Quick Facts. Texas Quick Facts.

⁸⁶³ Health and Human Services Commission. (November 3, 2003). H.B. 2292 Transition Plan.

⁸⁶⁴ Ibid.

⁸⁶⁵ To avoid confusion, this report will use the former names of the Texas agencies that operate services for people with disabilities, when appropriate, because much of the material in the report will apply to those agencies.

⁸⁶⁶ Ibid.

⁸⁶⁷ Ibid.

⁸⁶⁸ Texas Health and Human Services Commission. (June 2004). “Texas Medicaid in Perspective.” Fifth Edition. Available at: www.hhsc.state.tx.us/medicaid/reports/PB5/PinkBookhtml.

⁸⁶⁹ Tilly, J., O’Shaughnessy, C., & Weissert, R. (May 1, 2003). “A CRS Review of 10 States: Home- and Community- Based Services—States Seek to Change the Face of Long-Term Care: Texas.” Congressional Research Service Report for Congress and Texas Department of Human Services. Budget and Data Management. “2003 Reference Guide.” Available at: www.bms.dhs.statetx.us.

⁸⁷⁰ Texas Health and Human Services Commission. (June 2004). “Texas Medicaid in Perspective.” Fifth Edition.

⁸⁷¹ Human Services Research Institute. (October 2004). “Home and Community Services Litigation Status Report.”

⁸⁷² www.dshs.statetx.us/mhprograms/ACT/shtm.

⁸⁷³ Texas Mental Health and Mental Retardation Board. Office of Program Statistics and Planning. (April 12, 2002). “Report Update for State Mental Health Facilities: Final Report.”

⁸⁷⁴ Interagency Task Force on Appropriate Care Settings for Persons with Disabilities Report. (November 2003). S.B. 367

⁸⁷⁵ Texas Department of Housing and Community Affairs. “HOME Program Funds for the Olmstead Set Aside Still Available.” Texas state Web site. Available at: www.tdhca.state.tx.us/olmstead.htm.

⁸⁷⁶ Texas Department of Housing and Community Affairs. (January 2004). “Breaking Ground” newsletter.

⁸⁷⁷ S.B. 367. Interagency Task Force.

⁸⁷⁸ Texas Department of Human Services. “2003 Reference Guide.”

⁸⁷⁹ Texas Health and Human Services Commission. (February 1, 2004). “Effectiveness of Consumer Directed Services: First Annual Update.” Report to the 78th Texas Legislature. And Texas Health and Human Service Commission press release. (October 31, 2002). “Waiver approved by CMS.”

⁸⁸⁰ Ibid.

⁸⁸¹ Medicare+Choice plans offer more benefits generally than fee-for-service Medicare coupled with capitated payments and beneficiary premiums.

⁸⁸² When Rider 37 expired, the 2003 legislature enacted Rider 28 to continue the program.

⁸⁸³ Klein, J., et al. (February 2004). “Strategies and Challenges in Promoting Transitions from Nursing Facilities to the Community for Individuals with Disabilities: A Pilot Study of the Implementation of Rider 37 in Texas.” Community Living Exchange Collaborative at ILRU.

⁸⁸⁴ Ibid.

⁸⁸⁵ Center for Long-Term Care Integration. (2004). “STAR+PLUS 101.” Texas Health and Human Services Commission. And “Texas STAR+PLUS-State Access Reform-PLUS Long Term Care.” Medicare/Medicaid Integration Program, University of Maryland Center on Aging.

⁸⁸⁶ Fox-Grage, W., et al. (2003). “States’ Response to the Olmstead Decision: How Are States Complying?” National Conference of State Legislatures.

⁸⁸⁷ Indiana Family and Social Services Administration press release. (October 14, 2003). “Indiana receives federal grant to help seniors and people with disabilities.”

⁸⁸⁸ Census 2000. U.S. Census Bureau.

⁸⁸⁹ Indiana Family and Social Services Administration Web site. wwwin.gov/fssa.

⁸⁹⁰ Indiana Family and Social Services Administration. (2002). Statewide IN-Home Services: 2002 Annual Report.

⁸⁹¹ Estate recovery refers to the right of a state to file a claim against the estate of a Medicaid nursing home resident after the death of that resident so the state can be reimbursed for the services it provided. In 1993, Congress passed legislation specifically precluding states from protecting assets from recovery, but exempted the four states that had already set up the Partnership programs under Robert Wood Johnson Foundation demonstration grants.

⁸⁹² www.longtermcareinsurance.IN.gov.

⁸⁹³ Family and Social Services Administration Web site. (2004). “Indiana Long-Term Insurance Program.” Available at: www.in.gov/fssa

⁸⁹⁴ Burwell, B. (May 25, 2004). Medicaid Long Term Care Expenditures in FY 2003. The MEDSTAT Group, Inc.

⁸⁹⁵ Family and Social Services Administration. (June 30, 2003). Governor’s Commission on Home and Community- Based Services. June 2003 Report.

⁸⁹⁶ www.state.in.us/fssa/servicedisabl/olmstead/comprehensive.html.

⁸⁹⁷ Family and Social Services Administration. (June 30, 2003). Governor’s Commission on Home and Community- Based Services.

⁸⁹⁸ Senate Enrolled Act No. 493. (May 6, 2003). An Act to Amend the Indiana Code Concerning Human Services. Available at: www.in.gov/legislative/bills/2003/SE/SE0493.1.html.

⁸⁹⁹ Burwell, B. (May 25, 2004). Medicaid Long Term Care Expenditures in FY 2003. The MEDSTAT Group, Inc.; Indiana Family and Social Services Administration. (2002). Statewide IN-Home Services: 2002 Annual Report.

⁹⁰⁰ Braddock, D., & Hemp, R. (Spring 2004). “Developmental Disabilities Services in Indiana: 2004 Progress Report. Reported in The ARC News in Indiana. Coleman Institute, University of Colorado.

⁹⁰¹ Indiana S.B. 317 Task Force. (July 1998). “Comprehensive Plan for the Design of Services for People with Developmental Disabilities.” Family and Social Services Administration.

⁹⁰² Indiana Family and Social Services Administration. Mentally Retarded/Developmentally Disabled Commission Report. (November 6, 2003). “Implementation of 317 Plan.”

⁹⁰³ Ibid.

⁹⁰⁴ Braddock, D., & Hemp, R. (Spring 2004). “Developmental Disabilities Services in Indiana: 2004 Progress Report. Reported in The ARC News in Indiana. Coleman Institute, University of Colorado.

⁹⁰⁵ Family and Social Services Administration press release. (July 28, 2003). “Transitions from institutions to community easier, thanks to FSSA.”

⁹⁰⁶ Governor’s Council for People with Disabilities. (July 2003 update). Third Edition of the Consumer Guide to Medicaid Waiver Home and Community Based Services.

⁹⁰⁷ FSSA Fact Sheet. (2003). “Total Persons Served in the Community by Population and State Fiscal Year.” Family and Social Services Administration.

⁹⁰⁸ Family and Social Services Administration. (June 30, 2003). Governor’s Commission on Home and Community- Based Services.

⁹⁰⁹ Ibid.

⁹¹⁰ Indiana Family and Social Services Administration. (2002). Statewide IN-Home Services: 2002 Annual Report.

⁹¹¹ Ibid.

⁹¹² Medstat. (May 16, 2003). “Indiana—Coalition of Organizations with Resources about Home Ownership and Rental.” Promising Practices in Home and Community-Based Services. Medstat for the U.S. Centers for Medicare and Medicaid Services.

⁹¹³ Ibid.

⁹¹⁴ Governor’s Commission on Long Term Caregivers. Report and recommendations. Family and Social Services Administration. (2002). Available at: www.in.gov/fssa/community/pdf/LTCreport.pdf.

⁹¹⁵ Family and Social Services Administration. (June 30, 2003). Governor’s Commission on Home and Community- Based Services.

⁹¹⁶ Family and Social Services Administration. (2002). Grant narrative. Federal Community Personal Assistance Services and Supports.

⁹¹⁷ Administrative Rules Oversight Committee. (August 19, 2004). “Report of the Indiana Family and Social Services Administration on the Implementation of SEA 493.”

⁹¹⁸ Family and Social Services Administration. (June 30, 2003). Governor’s Commission on Home and Community- Based Services.

⁹¹⁹ National Council on Disability. (September 2003). Report to the President and Congress on Olmstead.

⁹²⁰ Family and Social Services Administration Web site. (June 2002). Real Choice Systems Change Grant Project Narrative.

⁹²¹ These provisions allow the spouse of a person receiving Medicaid-covered services to retain a certain amount of income and assets for expenses of living in the community.

⁹²² Family and Social Services Administration press release. (October 14, 2003). “Indiana receives federal grant to help seniors and people with disabilities.”

⁹²³ The Management Group, Inc. for Waushara County Department of Human Services. (June 2003). Cooperative Care: The First Year. An Evaluation and Analysis of the Waushara County Care Workers Cooperative. Madison, WI.

⁹²⁴ Bau, M., & Harrington, D. (May/June 2003). “House Calls,” Rural Cooperatives. Rural Business-Cooperative Service, U.S. Department of Agriculture, 70:3.

⁹²⁵ The Management Group, Inc. for Waushara County Department of Human Services. (June 2003). Cooperative Care: The First Year. An Evaluation and Analysis of the Waushara County Care Workers Cooperative. Madison, WI.

⁹²⁶ Bau, M., & Harrington, D. (May/June 2003). “House Calls,” Rural Cooperatives. Rural Business-Cooperative Service, U.S. Department of Agriculture, 70:3.

⁹²⁷ Bau, M., Cooperative Development Specialist, USDA Rural Development – Wisconsin. (2004). Delivering Co-op Development Technical Assistance. The Story of Cooperative Care, A Worker-owned Co-op of Home Care Providers. Accessed 2004. Available at: www.wisc.edu/uwcc/ace/04/bau/bau.pdf.

⁹²⁸ Practice Profile Database on the National Clearinghouse on the Direct Care Workforce Web site. Available at: www.directcareclearinghouse.org/.

⁹²⁹ Bau, M., & Harrington, D. (May/June 2003). “House Calls,” Rural Cooperatives. Rural Business-Cooperative Service, U.S. Department of Agriculture, 70:3.

⁹³⁰ The Management Group, Inc. for Waushara County Department of Human Services. (June 2003). Cooperative Care: The First Year. An Evaluation and Analysis of the Waushara County Care Workers Cooperative. Madison, WI.

⁹³¹ Bau, M., Cooperative Development Specialist, USDA Rural Development – Wisconsin. (2004). Delivering Co-op Development Technical Assistance. The Story of Cooperative Care, A Worker-owned Co-op of Home Care Providers. Accessed 2004. Available at: www.wisc.edu/uwcc/ace/04/bau/bau.pdf.

⁹³² The Management Group, Inc. for Waushara County Department of Human Services. (June 2003). Cooperative Care: The First Year. An Evaluation and Analysis of the Waushara County Care Workers Cooperative. Madison, WI.

⁹³³ Ibid.

⁹³⁴ National Time Bank Network. (2000). Intervention 4. Issue Papers – People’s Health Movement PHM.

⁹³⁵ New Economics Foundation. (July 2001). Time Banks: A Radical Manifesto for the UK.

⁹³⁶ Cahn, E.S. (undated). The Non-Monetary Economy. Found on the Time Dollar USA Web site. Available at: www.timedollar.org/documents/Non-MonetaryEconomy.pdf.

⁹³⁷ National Time Bank Network. (2000). Intervention 4. Issue Papers – People’s Health Movement PHM.

⁹³⁸ Time Dollar Institute. (undated). “The Time Dollar How-To Manual: A comprehensive guide to starting and running your time dollar exchange,”

⁹³⁹ Time Dollar USA Web site: www.timedollar.org/.

⁹⁴⁰ Boyle, D. (undated). The New Philanthropy. The New Economics Foundation, London England.

⁹⁴¹ Boyle, D. The Co-Production Principle and Time Dollars. The Time Dollar USA Web site. Available at: www.timedollar.org/documents/Co-ProductionPrinciple.pdf.

⁹⁴² Time Dollar Institute. Time to Unite: Third International Time Banking Congress Report Autumn 2004. Available at: www.timedollar.org/documents/Congressreportfinalforweb_000.pdf.

⁹⁴³ Time Dollar USA Web site: www.timedollar.org/.

⁹⁴⁴ Time Dollar Institute. Time to Unite: Third International Time Banking Congress Report Autumn 2004. Available at: www.timedollar.org/documents/Congressreportfinalforweb_000.pdf.

⁹⁴⁵ The Co-Production Principle and Time Dollars. A report by David Boyle. Found on the Time Dollar USA Web site: www.timedollar.org/documents/Co-ProductionPrinciple.pdf.

⁹⁴⁶ Time Dollar USA Web site: www.timedollar.org/.

⁹⁴⁷ Boyle, D. The Co-Production Principle and Time Dollars. The Time Dollar USA Web site. Available at: www.timedollar.org/documents/Co-ProductionPrinciple.pdf.

⁹⁴⁸ New Economics Foundation. (July 2001). Time Banks: A Radical Manifesto for the UK.

⁹⁴⁹ Time Dollar Institute. (undated). “The Time Dollar How-To Manual: A comprehensive guide to starting and running your time dollar exchange,”

⁹⁵⁰ Time Dollar USA Web site. Available at: www.timedollar.org/.

⁹⁵¹ Maine Time Dollar Network Web site. Available at: www.NETEN.org.

⁹⁵² Time Dollar Institute. (undated). “The Time Dollar How-To Manual: A comprehensive guide to starting and running your time dollar exchange,”

⁹⁵³ Root Cause Institute. (August 2004). Improving Efficiency & Sustainability – Summary Report of Interviews with Local Time Banks. Time Banks International Conference.

⁹⁵⁴ Recent data shows that more than 5.8 million (18 percent) of people age 65 and older who did not reside in institutions such as nursing facilities had difficulty performing either ADLs or IADLs without assistance. Seniors’ Commission Report, p. 26.

⁹⁵⁵ Disability advocates and housing professionals agree that this figure underestimates the number of people with disabilities with worst-case housing needs, because it is based solely on those people with disabilities receiving SSI and does not include other low-income people with disabilities.

⁹⁵⁶ U.S. Department of Housing and Urban Development. (December 2003). Trends in Worst Case Needs for Housing, 1978-1999: A Report to Congress on Worst Case Housing Needs. Plus Update on Worst Case Needs in 2001. Office of Policy Development and Research, HHS.

⁹⁵⁷ National Council on Disability. (December 2, 2004). Livable Communities for Adults with Disabilities. Washington, DC: NCD.

⁹⁵⁸ Roundtable for a New Initiative in Affordable Cooperative Ownership. Held at the Ford Foundation in New York City, October 27, 2004. Hosted by the National Cooperative Bank and NCB Development Corporation.

⁹⁵⁹ Ibid.

⁹⁶⁰ Barnette, M. (October 2004). Creating Multifamily Homeownership at Scale: Affordable Housing Cooperatives in New York City, Washington, DC, and Chicago. A publication of the Pratt Institute Center for Community and Environmental Development. Prepared for NCB Development Corporation.

⁹⁶¹ Cooperative Housing Coalition. (2002). People Building Communities: Affordable Cooperative Housing. Washington, DC.

⁹⁶² Lewis, T., & Higgins, L.R. (October 2004). The Advantages and Disadvantages of Cooperative Housing as an Affordable Alternative. A paper prepared for NCB Development Corporation.

⁹⁶³ NCB Development Corporation. (January 2004). Creating Affordable Cooperative Homeownership. Case Statement—Together We Can. Washington, DC: NCBDC.

⁹⁶⁴ Cooperative Housing Coalition. (2002). People Building Communities: Affordable Cooperative Housing. Washington, DC.

⁹⁶⁵ NCB Development Corporation. (January 2004). Creating Affordable Cooperative Homeownership. Case Statement —Together We Can, January 2004. Washington, DC: NCBDC.

⁹⁶⁶ NCB Development Corporation. (Revised September 2003). Together We Can: Affordable Cooperative Homeownership Initiative. Washington, DC: NCBDC.

⁹⁶⁷ Together We Can, a program of the NCB Development Corporation, Web site. Available at: www.ncbdc.org/ (link to “Together We Can Program” under Affordable Co-op Housing).

⁹⁶⁸ Asset Building Initiatives for People with Cognitive Impairments. Fact Sheet, No Place Like Home Communities, Robbinsdale, Minnesota.

⁹⁶⁹ Housing Choice Summary, September 2004. Fact Sheet, No Place Like Home Communities, Robbinsdale,Minnesota.

⁹⁷⁰ No Place Like Home Communities Web site. Available at: www.nplhc.org.

⁹⁷¹ NPLHC’s Needs for Technical Assistance. (November 9, 2004). Discussion Paper.

⁹⁷² Saegart, S., & Benitez, L. (forthcoming). “Limited Equity Housing Cooperatives: Defining a Niche in the Low- Income Housing Market.” Journal of Planning Literature.

⁹⁷³ NCB Development Corporation. (January 2004). Creating Affordable Cooperative Homeownership. Case Statement—Together We Can. Washington, DC: NCBDC.

⁹⁷⁴ NPLHC’s Needs for Technical Assistance. (November 9, 2004). Discussion Paper.

⁹⁷⁵ Wetherow, D., & Wetherow, F. (Revised August 2004). Microboards and Microboard Association Design, Development and Implementation. Found on the Community Works Web site. Available at: www.communityworks.info/articles/Microboard.htm.

⁹⁷⁶ Vela Microboard Association of British Columbia Web site. Available at: www.Microboard.org/.

⁹⁷⁷ National Council on Disability. (December 2, 2004). Livable Communities for Adults with Disabilities. Washington, DC: NCD.

⁹⁷⁸ Offner, R.B., Cameron, C.T., and Golden, J. (July 2001). The Self-Directed Support Corporation (SDSC) Model. A working paper of the Inclusion Research Institute.

⁹⁷⁹ Self-Directed Support Corporations. A Power Point presentation of the Inclusion Research Institute.

⁹⁸⁰ Self-Directed Support Corporations Web site. Inclusion Research Institute. Available at: www.self-determined.org/.

⁹⁸¹ Self-Directed Support Corporations. A Power Point presentation of the Inclusion Research Institute.

⁹⁸² Self-Directed Support Corporations-A self-determination model. (February 9, 2004). Monday Morning in Washington, DC. (Inclusion Research Institute, 2002).

⁹⁸³ O’Brien, J. (1999). Community Engagement: A Necessary Condition for Self-Determination and Individual Funding. Paper presented at the meeting of the Community Engagement Working Group, Pickering, Ontario, Canada.

⁹⁸⁴ Moseley, C., & Nerney, T. (1998). Emerging Best Practice in Self-Determination. Common Sense, New Hampshire: Publication of the National Program Office on Self-Determination.

⁹⁸⁵ Moseley, C. (1999). Making Self-Determination Work. New Hampshire: Publication of the National Program Office on Self-Determination.

⁹⁸⁶ Self-Directed Support Corporations Web site. Inclusion Research Institute. Available at: www.self-determined.org/.

⁹⁸⁷ Meet Joshua! Texas Self-Determination Symposium. Found on the Employment for All Web site. Available at: www.employmentforall.org/articles/articles.html.

⁹⁸⁸ Golden, J. (2004). What a Difference an SDSC Can Make: Joshua’s House Incorporated! by Jackie Golden. Available at: www.bridges4kids.org/pdf/Golden-Microboards.pdf.

⁹⁸⁹ Davis, S., Ed. (2003). A Family Handbook on Future Planning, (2003). Produced by The Arc of the United States and the RRTC on Aging with Developmental Disabilities.

⁹⁹⁰ Pooled Trust Programs for People with Disabilities: A guide for families. The Arc of the United States (2002).

⁹⁹¹ Ibid.

⁹⁹² Heller, T., & Factor, A. (1991). Permanency Planning for Adults with Mental Retardation Living with Family Caregivers. American Journal on Mental Retardation, 96: 163–76.

⁹⁹³ Heller, T., & Factor, A. (1993, a). Aging Family Caregivers: Changes in burden and placement desire. American Journal on Mental Retardation, 98: 417–26.

⁹⁹⁴ Davis, S., & Berkobien, R. (2003). Best Practices in Pooled Trust Programs. The Arc of the United States and the RRTC on Aging with Developmental Disabilities. More information available at: www.uic.edu/orgs/rrtcamr/research3_2.htm.

⁹⁹⁵ Heller, T., & Factor, A. (1991). Permanency Planning for Adults with Mental Retardation Living with Family Caregivers. American Journal on Mental Retardation, 96: 163–76.

⁹⁹⁶ Heller, T., & Factor, A. (1993, a). Aging Family Caregivers: Changes in burden and placement desire. American Journal on Mental Retardation, 98: 417–426.

⁹⁹⁷ Enhanced Life Options. Developing enhanced life options for people with disabilities Web site. Available at: www.elonh.org/.

⁹⁹⁸ Family Reference Materials. Enhanced Life Options Trust Program. This article is posted on the Web site with the permission of the author and the publisher, and is based on information presented at the December 6, 2002, New Hampshire Bar Association Continuing Legal Education Program, Bedford, New Hampshire, and also at the 2003 New Hampshire Family Support Conference, Conway, New Hampshire. Available at: www.elonh.org/frm/frm1.html.

⁹⁹⁹ HM Treasury. (April 2001). Saving and Assets for All: The Modernisation of Britain’s Tax and Benefit System.

¹⁰⁰⁰ HM Treasury and Inland Revenue. (October 2003). Detailed proposals for the Child Trust Fund,

¹⁰⁰¹ HM Treasury. (April 2001). Saving and Assets for All: The Modernisation of Britain’s Tax and Benefit System.

¹⁰⁰² Child Trust Fund Your Questions Answered. Child Trust Fund – CTF – UK Government Child Trust Funds for children. Homeowners Friendly Society Web site. Accessed 2004. Available at: www.homeowners.co.uk/ctf_faq.htm.

¹⁰⁰³ HM Treasury and Inland Revenue. (October 2003). Detailed proposals for the Child Trust Fund.

¹⁰⁰⁴ Frequently Asked Questions about the F&C Child Trust Fund. First in Investment Trust Web site. Accessed 2004. Available at: www.fandc.com/en/uk/pi/promotions/ctffaq.asp.

¹⁰⁰⁵ Introducing the Child Trust Fund. Inland Revenue. Child Trust Fund Web site. Accessed 2004. Available at: www.childtrustfund.gov.uk/assetRoot/04/00/24/44/04002444.pdf.

¹⁰⁰⁶ Introduction to the Child Trust Fund. Child Trust Fund Homepage – The Child Trust Fund Web site. Accessed 2004. Available at: www.childtrustfund.gov.uk/Homepage/fs/en.

¹⁰⁰⁷ HM Treasury and Inland Revenue. (October 2003). Detailed proposals for the Child Trust Fund.

¹⁰⁰⁸ Hind, G., Consumer Education Services, FSA. (February 25, 2003). Financial Education and The Child Trust Fund. Paper presented at IPPR seminar on “The Role of Financial Education in Asset-based Policies.”

¹⁰⁰⁹ HM Treasury and Inland Revenue. (October 2003). Detailed proposals for the Child Trust Fund.

¹⁰¹⁰ HM Treasury. (April 2001). Saving and Assets for All: The Modernisation of Britain’s Tax and Benefit System.

¹⁰¹¹ Mensah, L., Schneider, R., & Aboulfadl, M. (June 2004). The Child Trust Fund: A Universal Long-Term Savings Policy. Aspen Institute, Initiative on Financial Security. Accessed 2004. Available at: www.aspeninstitute.org/.

¹⁰¹² Language added to U.S. Senate Bill, 109th Congress - S.B. 705: Establish an Interagency Council on Meeting the Housing and Service Needs of Seniors, April 5, 2005, to include people with disabilities.

¹⁰¹³ Ibid.