A cross-disability analysis of person-directed, long-term services

Journal of Disability Policy Studies

Volumn 17, Issue 2, 2006, Pages 66-76

  Powers, Laurie E ^a   Sowers, Jo Ann ^a   Singer, George H S ^b  

^a PORTLAND STATE UNIVERSITY   (United States)

^b UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 33750158982     PISSN: 10442073     EISSN: None     Source Type: Journal    
DOI: 10.1177/10442073060170020301     Document Type: Article

References (84)

1. Adams, M., & Beatty, P. (1998). Consumer-directed personal assistance services: Independent living, community integration and the vocational rehabilitation process. Journal of Vocational Rehabilitation, 10, 93-101.
2. Agosta, J. (1998). Meeting the challenges ahead: Self-determination, fiscal responsibility and participant driven supports. Durham, NH: Institute on Disability, University of New Hampshire.
3. Agosta, J., & Melda, K. (1995). Supplemental security income for children with disabilities: An exploration of child and family needs and the relative merits of the cash benefit program. Salem, OR: Human Services Research Institute.
4. Americans with Disabilities Act Title II Regulations. 28 C.F.R. §450, available [on-line] at http://www.usdoj.gov/crt/ada/taman2.html
5. Badelt, C., Holzmann-Jenkins, A., Matul, C., & Osterle, A. (1997). Analyse der Auswirkungen des Pflegevorsorgesystems, Bundesministeriums fur Arbeit, Gesundheit Und Soziales Wien, Austria, Translated by Jon Peter Hopperger.
6. Barusch, A. S. (1991). Elder care: Family training and support. Thousand Oaks, CA: Sage.
7. Bass, D. S. (1990). Caring families: Supports and interventions. Silver Spring, MD: National Association of Social Workers Press.
8. Beatty, P., Adams, M., & O'Day, B. (1998).Virginia's consumer-directed per sonal assistance services program: A history and evaluation. American Rehabilitation, 24(3), 31-35.
9. Beatty, P. W., Richmond, G. W., Tepper, S., & DeJong, G. (1998). Personal assistance for people with physical disabilities: Consumer-direction and satisfaction with services. Archives of Physical Medicine and Rehabilitation, 79(6), 674-677.
10. Benjamin, A. E., Matthias, R., Franke, T., Mills, L., Hasenfeld, Y., Matras, L., et al. (1998). Comparing client-directed and agency models for providing supportive services at home final report. Los Angeles: University of California at Los Angeles.
11. Braddock, D., Hemp, R., Parish, S., Westrich, J., & Park, H. (1998). The state of the states in developmental disabilities. (5th ed.). Washington, DC: AAMR.
12. Brown, R.S., Loughlin, D.M., Mahoney, K., Simon-Rusinowitz, L., & Crisp, S. (December 14, 2005). The Cash and Counseling Evaluation Findings Final Report - Introducing Final Evaluation Results and an Interactive Data Website. Houston, TX: Independent Living Research Utilization Webcast.
13. Cameron, K. A. (1993). International and domestic programs using "cash and counseling" strategies to pay for long-term care. Washington, DC: United Seniors Health Cooperative.
14. Collopy, B. (1988). Autonomy in long-term care: Some crucial distinctions. The Gerontologist, 28, 10-17.
15. Conroy, J., Fullerton, A., Brown, M., & Garrow, J. (2002). Outcomes of the Robert Wood Johnson Foundation's national initiative on self-determination for persons with developmental disabilities: Final report on 3 years of research and analysis. Narberth, PA: Center for Outcome Analysis.
16. Conroy, J., & Yuskauskas, A. (1996). Independent evaluation of the Monadnock Self-Determination Project. Ardmore, PA: The Center for Outcome Analysis.
17. Cook, J. A., & Jonikas, J. (2002). Self-determination among mental health consumers/survivors: Using lessons from the past to guide the future. Journal of Disability Policy Studies, 13, 87-95.
18. Covert, S. B., MacIntosh, J. D., & Shumway, D. L. (1994). Closing the Laconia State School and Training Center: A case study in systems change. In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 197-212). Baltimore: Brookes.
19. Dejong, G., Batavia, A. I., & McKnew, L. B. (1992). The independent living model of personal assistance in national long-term-care policy. Generations, 16, 89-95.
20. Doty, P., Kasper, J., & Litvak, S. (1996). Consumer-directed models of personal care: Lessons from Medicaid. The Millbank Quarterly, 74(3), 377-409.
21. Dybwad, G., & Bersani, H. A. (1996). New voices: Self-advocacy by people with disabilities. Cambridge, MA: Brookline.
22. Egley, L. (1994). New federal PC Option PAS funding rules: Summary. Berkeley, CA: World Institute on Disability.
23. Ellison, M. L., Rogers, E. S., Sciarappa, K., Cohen, M., & Forbess, R. (1995). Characteristics of mental health case management: Result national survey. Journal of Mental Health Administration, 22(2), 101-112.
24. Estes, C. L., & Swan, J. H. (1993). The long term care crisis: Elders trapped in the no-care zone. Beverly Hills, CA: Sage.
25. Eustis, N. N., & Fischer, L. R. (1992). Common needs, different solutions? Younger and older home care clients. Generations (San Francisco, Calif.), 16, 17-22.
26. Fenton, M., Entrikin, T., Morrill, S., Marburg, G., Shumway, D., & Nerney, T. (1997). Beyond managed care: An owner's manual for self-determination. Concord: Self-Determination for Persons with Developmental Disabilities, Institute on Disability, University of New Hampshire.
27. Feinberg, L., & Whitlatch, C. (February, 1997). Family caregiver and consumer choice: Options for in-home respite care. San Francisco, CA:. Family Care-giver Alliance.
28. Fisher, D. (1994). Health care reform based on an empowerment model of recovery by people with psychiatric disabilities. Behavioral Healthcare Tomorrow, 45(9), 913-915.
29. Flanagan, S. A., & Green, P. S. (1997). Consumer-directed personal assistance services: Key operational issues for state (CD-PAS programs using intermediary service organizations. Cambridge MA: The Medstat Group.
30. Foster, L., Brown, R., Carlson, B., Phillips, B., & Schore, J. (2001, June). Cash and counseling: Consumers' early experience in Arkansas and New Jersey. Paper presented at the Independent Choices National Symposium on Consumer Direction and Self-Determination, Washington, DC.
31. Gilles, M. O., Groc, I., & Legros, M. (1995). La Prestation Dependance: Experimentations Resultats des phases 1 et 2 du Programme d'Evaluation de l'Experimentation d'une Prestation Dependance. Paris, France: CREDOC. Translated by Jane Tilly.
32. Grana, J. M., & Yamashiro, S. M. (1987). An evaluation of the Veterans Administration housebound and aid and attendant allowance program, Project HOPE. Prepared for the Office of the Assistant Secretary for Policy and Evaluation, Department of Health and Human Services, Washington, DC.
33. Hagner, D. (1996). "Natural supports" on trial: Day 2799? The Journal of the Association for Persons with Severe Handicaps, 21(4), 181-184.
34. Harrington, C., LaPlante, M., Newcomer, R. J., Bedney, B., Shostak, S., Summers, P., et al. (1998). A review of federal statutes and regulations for personal care and home and community based services: A final report. San Francisco: Department of Social and Behavioral Sciences, University of California.
35. Harris & Associates. (1993). The ICD survey of disabled Americans: Bringing disabled Americans into the mainstream. Incitement, 9, 12.
36. Heller, T., Factor, A. R., Hsieh, K., & Hahn, J. E. (1998). The impact of age and transitions out of nursing homes for adults with developmental disabilities. American Journal of Mental Retardation, 103, 236-248.
37. Herman, S. (1991). Use and impact of a cash subsidy program. Mental Retardation, 29(5), 253-258.
38. Hofland, B. (1988). Autonomy in long-term care: Background issues and a programmatic response. The Gerontologist, 28, 3-9.
39. Horowitz, A., Silverstone, B. M., & Reinhardt, J. (1991). A conceptual and empirical exploration of personal autonomy issues with family caregiving relationships. The Gerontologist, 31(1), 23-31.
40. Independent Living Research Utilization. (1999). Options, choices, and control: Attendant care in America: The report of a National Blue Ribbon Panel on Personal Assistance Services. Houston, TX: Author.
41. Wunderlich, G. S., & Kohler, P. (Eds.). (2001). Improving the quality of long-term care. Washington, DC: National Academy Press.
42. Kane, R. (1996). The quality conundrum in homecare. Aging Today, 7-8.
43. Kapp, M. B. (1991). Improving choices regarding home care services: Legal impediments and empowerments. Saint Louis University Public Law Review, 10, 441-484.
44. Kennedy, J., LaPlante, M. P., & Kaye, H. S. (1997). Need for assistance in the activities of daily living. Disability Statistics Abstract, 18, 2-5.
45. Litvak, S., Zukas, H., & Heumann, J. E. (1987). Attending to America-Personal assistance for independent living: A survey of attendant service programs in the United States for people of all ages with disabilities. Berkeley, CA: World Institute on Disability.
46. Mahoney, K. J., Simone, K., & Simon-Rusinowitz, L. (2000). Early lessons from the cash and counseling demonstration and evaluation. Generations, 24(111), 41-46.
47. McFarlane, W. R., Lukens, E., Link, B., Dushay, R., Deakins, S. A., Newmark, M., et al. (1995). Multiple-family groups and psychoeducation in the treatment of schizophrenia. Archives of General Psychiatry, 52(8), 679-687.
48. Meyers, J., & Marcenko, M. (1989). Impact of a cash subsidy program for families of children with a severe developmental disability. Mental Retardation, 27, 383-386.
49. Micco, A., Hamilton, A. C. S., Martin, M. J., & McEwan, K. L. (1995). Case manager attitudes toward client-directed care. Journal of Case Management, 4, 95-101.
50. Miltenburg, T., Ramakers, C., & Mensink, J. (1996). A Personal Budget for Clients, Summary of an Experiment with Cash Benefits in Home Care in the Netherlands. Nijmegen Netherlands, Institute for Applied Social Sciences.
51. Mittelman, M. S., Ferris, S. H., Shulman, E., Steinberg, G., & Levin, B. (1996). A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial. Journal of the American Medical Association, 276(21), 1725-1731.
52. Morris, R., Caro, F. G., & Hansan, J. E. ( 1998 ). Personal assistance: The future of home care. Baltimore: Johns Hopkins University Press.
53. Moseley, C. (2001). Self-determination for persons with developmental disability: Final and summative program report. Durham: Institute on Disability, University of New Hampshire.
54. Nadash, P. (1997, Winter). Symposium debates delegation issues. Consumer Choice News, p. 2.
55. National Institute on Consumer-Directed Long-Term Services. (1996). Principles of consumer-directed home and community-based services. Washington, DC: The National Council on the Aging.
56. Nirje, B. (1969). The normalization principle and its management implications. In R. Kugel & W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded (pp. 51-57). Washington, DC: US Government Printing Office.
57. Olmstead v. L.C. 527 U.S. 581 (1999).
58. Phillips, B., Mahoney, K., Simon-Rusinowitz, L., Schore, J., Barrett, S., Ditto, W., et al. (2003). Lessons from the implementation of cash and counseling in Arkansas, Florida and New Jersey: Final report. Princeton, New Jersey: Mathematica Policy Research, Inc.
59. Pita, D. D., Ellison, M. L., Farkas, M., & Bleeker, T. (2001). Exploring personal assistance services for people with psychiatric disabilities: Need, policy, and practice. Journal of Disability Policy Studies, 12(1). 2-9.
60. Pita, D. D., Ellison, M. L., & Kantor, E. (1999). Psychiatric personal assistance services: A new service strategy. Unpublished data available from the Center for Psychiatric Rehabilitation, Boston University.
61. Powers, L. E. (1996). Family and consumer activism in disability policy. In G. H. Singer, L. E. Powers, & A. L. Olson (Eds.), Redefining family support: Innovations in public-private partnerships (pp. 413-434). Baltimore: Brookes.
62. Powers, L. E., Ward, N., Ward, M., Nelis, T., Ferris, L., Heller, T., et al. (2002). Leadership by people with disabilities in self-determination-based systems change. Journal of Disability Policy Studies, 13(2), 125-133.
63. President's New Freedom Commission on Mental Health. (2003). Achieving the promise: Transforming mental health care in America. [on-line]. Available: http://www.mentalhealthcommission.gov.
64. Richmond, G. W., Beatty, P., Tepper, S., & Dejong, G. (1997). The effect of consumer-directed personal assistance services on the productivity outcomes of people with disabilities. Journal of Rehabilitation Outcomes Measurement, 1(4), 48-51.
65. Rodin, J. (1986). Aging and health: Effects of the sense of control. Science, 233, 1271-1275.
66. Rothbard, A. B., & Kuno, E. (1999). The success of deinstitutionalization: Empirical findings from case studies on state hospital closures. Journal of International Law and Psychiatry, 28, 329-344.
67. Runde, P., Giese, R., Kerschke-Risch, P., Scholz, U., & Wiegel, D. (1996). Einstellungen und Verhalten zur Pflegeversicherung und zur hauslichen Pflege, Universitat Hamburg, Hamburg Germany, December 1996. Translated by Jon Peter Hopperger.
68. Rutgers University and World Institute on Disability. (1992). Towards an understanding of the demand for personal assistance. New Brunswick, NJ: Rutgers University.
69. Salomon, J., Polivka, L., & Weber, S. (1998). Quality of life in long-term care: The role of control. Tampa: University of South Florida Press.
70. Scala, M. A., & Mayberry, P. S. (1997). Consumer-directed home services: Issues and models. Oxford, OH: Ohio Long-Term Care Research Project, Miami University.
71. Scala, M. A., Mayberry, P. S., & Kunkel, S. R. (1996). Consumer-directed home care: Client profiles and service challenges. Journal of Case Management, 5(3), 91-98.
72. Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.
73. Simon, M., & Martin, F. (1996). La Prestation Dependance: Rapport Final du Programme d'Evaluation de l'Experimentation d'une Prestation Dependance. Paris, France: CREDOC. Translated by Jane Tilly.
74. Simon-Rusinowitz, L., Mahoney, K. J., Shoop, D. M., Desmond, S. M., Squillace, M. R., & Sowers, J. A. (2001 ). Consumer and surrogate preferences for a cash option versus traditional services. Mental Retardation, 39(2), 87-103.
75. Singer, G. H. S., Irvin, L. K., Irvine, B., Hawkins, N. J., & Cooley, E. (1989). Evaluation of communities-based support services for families of persons with developmental disabilities. Journal of the Association for the Severely Handicapped, 14(4), 312-323.
76. Smith, G. A., Prouty, R., & Lakin, C. K. (1996). The HCB Waiver Program: The fading of Medicaid's "Institutional Bias." Mental Retardation, 34(4), 262-263.
77. Stainton, T., & Boyce, S. (2001). Final Report: An Evaluation of Cardiff and the Vale Independent Living Scheme and the Implementation of Direct Payments. Cardiff: Wales Office of Research and Development in Health and Social Care.
78. Stainton, T., & Boyce, S. (2002). I have got my freedom back... An evaluation of direct payments in Cardiff and the Vale of Glamorgan. Liais, 64, 3-5.
79. Thomasma, D. (1984). Freedom, dependency, and the care of the very old. Journal of the American Geriatrics Society, 32, 906-914.
80. Tilly, J., & Bectel, R. (1999). Consumer-directed long-term care: Participants' experiences in five countries. Washington, DC: American Association of Retired Persons.
81. Velgouse, L., & Dize, V. (2000). A review of state initiatives in consumer-directed long-term care. Generations, 24(111), 28-33.
82. Walker, P., Taylor, S., Searl, J., Shoultz, B., Hulgin, K., Harris, P., et al. (1996). Evaluation of the self-directed personal services program operated through Enable. Syracuse, NY: Center on Human Policy, Syracuse University.
83. Yoon, R., McKenzie, D. K., Bauman, A., & Miles, D. A. (1993). Controlled trial evaluation of an asthma education programme for adults. Thorax, 48(11), 1110-1116.
84. Zimmerman, S. (1984). The mental retardation family subsidy program: Its effects on families with a mentally handicapped child. Family Relations, 33, 105-118.