Albert, S.M. & Levine, C. (2005). Family caregiver research and the HIPAA factor. Gerontologist, 45(4), 432-437.
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Albert, S.M., Simone, B., Brassard, A., Stern, Y. & Mayeux, R. (2005). Medicaid home care services and survival in New York City. Gerontologist, 45(5), 609-616.
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Amador, T.K., Travis, S.S., McAuley, W.J., Bernard, M. & McCutcheon, M. (2006). Recruitment and retention of ethnically diverse long-term family caregivers for research. Journal of Gerontological Social Work, 47(3/4), 139-152.
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Andersen, R. & Newman, J.F. (2005). Societal and individual determinants of medical care utilization in the United States. The Milbank Quarterly, 83(4), Online-only.
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Argiropolis, M., Nielsen, A. & Ricker, R. (2006). Eldercare in New Hampshire: Labor market trends and their implications. New Hampshire Economic and Labor Market Information Bureau: Concord, NH.
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Bainbridge, D., Traci, M.A., Brod, R. & Seekins, T. (2005, December 13). Why personal assistant staff leave: Factors that increase turnover. Presentation at the 133rd Annual Meeting of the American Public Health Association.
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Barker, J.C. (2002). Neighbors, friends, and other nonkin caregivers of community-living dependent elders. Journal of Gerontology B: Social Sciences, 57(3), S158-S167.
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Barrett, Jocelyn. (2004). "Common sense and patience: Arlene’s story." Our Stories series, Maine Personal Assistance Services Association
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Beauchamp, N., Irvine, B., Seeley, J. & Johnson, B. (2005). Worksite-based internet multimedia program for family caregivers of persons with dementia. Gerontologist, 45, 6, 793-801.
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Bell, H.S. (2003). Creating financial incentives to serve partial benefit recipients in the Ticket to Work program. Washington, D.C.: Urban Institute.
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Benach, J., Amable, M., Muntaner, C. & Benavides, F.G. (2002). The consequences of flexible work for health: Are we looking at the right place? Journal of Epidemiology and Community Health, 56, 405-406.
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Benjamin, A.E. (2001). Consumer-directed services at home: A new model for persons with disabilities. Health Affairs, 20 (6): 80-95.
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Benjamin, A.E. & Matthias, R.E. (2004). Work-life differences and outcomes for agency and consumer-directed home care workers. Gerontologist, 44 (4): 479-88.
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Boris, E. & Klein, J. (2006). Organizing home care: Low-waged workers in the welfare state. Politics & Society, 34, 1, 81-108.
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Boris, E., Chung, G., Delp, L., Matthias, R. & Zubin, C. (2004, May). Workforce needs in California’s healthcare system. Briefing Paper. California Policy Research Center, Berkeley, CA.
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Bradley, E.H., Webster, T.R., Baker, D., Schlesinger, M., Inouye, S.K., Barth, M.C., Lapane, K.L., Lipson, D., Stone, R. & Koren, M.J. (2004). Translating research into practice: Speeding the adoption of innovative health care programs. Issue Brief (Commonwealth Fund), 724, 1-12.
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Braun, K.L., Cheang, M. & Shigeta, D. (2005). Increasing knowledge, skills, and empathy among direct care workers in elder care: A preliminary study of an active-learning model. Gerontologist, 45, 1, 118-124.
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Brega, A.G., Goodrich, G.K., Powell, M.C. & Grigsby, J. (2005). Racial and ethnic disparities in the outcomes of elderly home care recipients. Home Health Care Services Quarterly, 24, 3, 1-21.
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Brown, J.G., Trinkoff, A., Rempher, K., McPhaul, K., Brady, B., Lipscomb, J. & Muntaner, C. (2005, May). Nurses’ inclination to report work-related injuries: Organization, work-group and individual factors associated with reporting. American Association of Occupational Health Nurses Journal, 53 (5), 213-217.
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Buhr, G.T., Kuchibhatla, M. & Clipp, E.C. (2006). Caregivers’ reasons for nursing home placement: Clues for improving discussions with families prior to the transition. Gerontologist, 46, 1, 52-61.
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Burke, S.P., Feder, J. & Vander de Water P.N. (eds.) (2005, November). Developing a better long-term care policy: A vision and strategy for America’s future. Washington: National Academy of Social Insurance.
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Butler, S.S., Kaye, L.W., Ruffin, L. & Downey, R. (2005). Depression and caregiver burden among rural elder caregivers. Journal of Gerontological Social Work, 46, 2, 47-63.
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Capitman, J., Bishop, C., and Casler, R. (2005). Long-term care quality: Historical overview and current initiatives. Washington, DC: National Quality Forum.
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Castle, N.G. & Engberg, J. (2006). Organizational characteristics associated with staff turnover in nursing homes. Gerontologist, 46, 1, 62-73.
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Center for Workers with Disabilities. (2002). Building work incentives using Section 1902(r)(2) of the Medicaid statute. (Report No. 02-2). Washington, D.C.: Author.
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Center for Workers with Disabilities. (n.d.) Overview of MBI for working individuals with disabilities. Washington, D.C.: Author.
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Center on an Aging Society (2004, June). Workers affected by chronic conditions: How can workplace policies and programs help? (Issue Brief Number 7). Washington DC: Georgetown University.
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Chapman, S., Kaye, S., & Newcomer, R. (2004) Home and Personal Care Workers by State. Published on the Center for PAS website http://pascenter.org/state_based_stats/acs_workforce_state.php
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Cinsavich, S. & Rado, G. (2002, April). Medicaid Buy-In: Concept and implementation (Policy Brief Volume 4, Number 2). Boston, MA: Institute for Community Inclusion.
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Coble-Temple, A. (Summer, 2002). Understanding the differences between worksite personal assistance services (PAS) and personal PAS on the job: Why this is important to rehabilitation? Rehabilitation Psychology News, 29(4).
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Cohen, A., Timmons, J.C. & Fesko, S.L. (2005). The Workforce Investment Act: How policy conflict and policy ambiguity affect implementation Journal of Disability Policy Studies, 15, 4, 221-230.
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Coleman, B., Fox-Grage, W., & Folkemer, D. (2003) State Long-Term Care: Recent Developments and Policy Directions 2003 Update. National Conference of State Legislators.
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Coleman, B.J. (2004). Navigating the care system: A guide for providers to help family caregivers.San Francisco, CA.: Family Caregiver Alliance. Retrieved March 13, 2006, from:
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1073
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Collier, E. and Harrington, C. Discharge planning, nursing home placement, and the internet. Nursing Outlook. 53(2): 95-103.
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Cranford, C. (2004, August 17). Security without Flexibility: Personal Care Workers and People with Disabilities in Ontario. Paper presentation at the 99th Annual Meeting of the American Sociological Association.
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Cranford, Cynthia J. 2005. "From Precarious Workers to Unionized Employees and Back Again?: The Challenges of Organizing Personal-Care Workers in Ontario." Pp. 96-135 in Self-Employed Workers Organize: Law, Unions and Policy, by Cynthia J. Cranford, Judy Fudge, Eric Tucker and Leah F. Vosko. Montreal: McGill-Queens University Press.
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Dal Santo, T., Scharlach, A. & Fox, P. (2005, November 19). Implementation of the National Family Caregiver Support Program: How has caregiver service use changed in California? Presentation at the Gerontological Society of America 58th Annual Scientific Meeting.
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Dale, S., Brown, R., Phillips, B. & Carlson, B. (2003, June). The experiences of workers hired under consumer direction in Arkansas. Final Report, Mathematica Evaluation Reports: 1-56.
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Dale, S., Brown, R., Phillips, B. & Carlson, B. (2005, August). The experiences of workers hired under Cash and Counseling: Findings from Arkansas, Florida, and New Jersey. Final Report, Mathematica Evaluation Reports: 1-98.
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Dale, S., Brown, R., Phillps, B. & Carlson, B.L. (2005). How do hired workers fare under consumer-directed personal care? Gerontologist, 45, 5, 583-592.
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Daly, Mary (Ed.). (2001). Care Work: The Quest for Security. Geneva: International Labour Office. Retrieved June 20, 2005, from http://www.ilo.org/public/english/protection/ses/info/publ/care.htm
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Dautel, P., & Frieden, L. (1999). Consumer choice and control: Personal attendant services and supports in America. Report of the Blue Ribbon Panel on personal assistance services. Houston, TX: Independent Living Research Utilization.
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Desonia, R. (2003) Is community care a civil right? The unfolding saga of the Olmstead decision. National Health Policy Forum.
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Dixon, Kl, Kruse, D., & Van Horn, C. (2003). Restricted access: A survey of employers about people with disabilities and lowering barriers to work (Work Trends Survey, 3:6). New Brunswick, NJ: Rutgers University, John J. Heldrich Center for Workforce Development.
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Donelan, K., Hill C.A., Hoffman, C., Scoles, K., Feldman, P.H., Levine, C. & Gould, D. (2002). Challenged to care: Informal caregivers in a changing health system. Health Affairs, 21 (4), 222-231.
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Doty, P. (2004, October). Consumer directed home care: Effects on family caregivers. Policy Brief, Family Caregiver Alliance, San Francisco, CA.
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Duffy, Niev. (2004, October). Keeping workers covered: Employer-provided health insurance benefits in the developmental disabilities field. JFK, Jr. Institute for Worker Education, City University of New York, New York.
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Ebenstein, W. (2006). Health insurance coverage of direct support workers in the developmental disabilities field. Mental Retardation, 44, 2, 128-134.
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Enbar, E.G., Fred, M.A., Miller, L., Naiditch, Z. (2004). A nationwide study of deinstitutionalization & community integration: A special report of the public policy and legal advocacy programs Equip for Equality, Illinois. (233 pages)
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Feinberg, L.F, Newman, S.L., Gray, L. & Kolb, K.N. (2004, November) The state of the states in family caregiver support: A 50-state study. Family Caregiver Alliance, San Francisco, CA.
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Feinberg, L.F., Wolkwitz, K. & Goldstein, C. (2006). Ahead of the curve: Emerging trends and practices in family caregiver support. AARP Public Policy Institute Issue Paper: Washington, D.C.
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Feldman, P.H., Nadash, P. & Gursen, M. (2001). Response to “Improving communication between researchers and policy makers in long term care: Or researchers are from Mars; Policy makers are from Venus” Reply. Gerontologist, 41 (6), 831.
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Folbre, N. (2006). Demanding quality: Worker/consumer coalitions and “High Road” strategies in the care sector. Politics & Society, 34, 1, 11-32.
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Folkemer, D. & Coleman, B. (2006). Home care quality: Emerging state strategies to deliver person-centered services. AARP Public Policy Institute Issue Paper: Washington, D.C.
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Foster, L., Brown, R., Phillips, B. & Carlson, B.L. (2003, August). . Easing the burden of caregiving: The impact of consumer direction on primary informal caregivers in Arkansas. . Washington, D.C.: Mathematica Policy Research, Inc. Retrieved June 20, 2005, from http://www.cashandcounseling.org/original_demonstration/download.html
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Foster, L., Brown, R., Phillips, B. & Carlson, B.L. (2005). Easing the burden of caregiving: The impact of consumer-direction on primary informal caregivers in Arkansas. Gerontologist, 45, 4, 474-485.
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Foster, L., Brown, R., Phillips, B., Schore, J. & Carlson, B.L. (2003, March). Improving the quality of Medicaid personal assistance through consumer direction. Health Affairs, Supplemental Web Exclusives: W3-162-175.
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Fox-Grage, W., Folkemer, D., & Lewis, J. (2003) The States’ response to the Olmstead decision: How are states complying? National Conference of State Legislators.
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Fried, T.R., Bradley, E.H., O’Leary, J.R. & Byers, A.L. (2005). Unmet desire for caregiver-patient communication and increased caregiver burden. Journal of the American Geriatrics Society, 53, 1, 59-65.
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Geiger-Brown, J., Muntaner, C., Lipscomb, J. & Trinkoff, A. (2004, October). Demanding work schedules and mental health in nursing assistants working in nursing homes. Work and Stress, 18 (4), 292-304.
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General Accounting Office (December 2005) Nursing Homes: Despite increased oversight, challenges remain in ensuring high-quality care and resident safety. Washington DC: General Accounting Office. GAO-06-117.
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Gershon, R.R.M., Sherman, M., Rosen, J., Qureshi, K., Barrera, M., Gebbie, & Brandt-Rauf, P. (2005, December 12). Bloodborne pathogen exposure in non-hospital based nurses. Presentation at the 133rd Annual Meeting of the American Public Health Association.
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Gibson, M.J., Gregory, S.R., Houser, A.N., & Fox-Grage, W. (2004). Across the states: Profiles of Long-Term Care 2004. AARP Public Policy Institute, Washington, D.C. Retrieved from
http://www.aarp.org/research/reference/statistics/across_the_states_profiles_of_long term_care_2004.html
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Gilbride, D. Stensrud, R., Ehlers, C., Evans, E., & Peterson, C. (2000). Employers' attitudes toward hiring persons with disabilities and vocational rehabilitation services. Journal of Rehabilitation, 66(4), 17-23.
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Gilbride, D., Stensrud, R., Vandergoot, D., & Golden, K. (2003). Identification of the characteristics of work environments and employers open to hiring and accommodating people with disabilities.Rehabilitation Counseling Bulletin, 463, 130-139. Available at http://www.worksupport.com/Main/proed_Identification.asp.
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Gillespie, Jennifer. (2003). Direct care worker associations and public authorities. Portland, ME: National Academy for State Health Policy. Retrieved June 20, 2005, from http://www.nashp.org/_docdisp_page.cfm?LID=AFF9D26A-8784-4138-A81023587341EA73
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Glass, A.P., Teaster, P.B., Roberto, K.A. & Brossoie, N. (2005). Elderly and disabled waiver services: Important dimensions of personal care from the client’s perspective. Home Health Care Services Quarterly, 24, 3, 59-77.
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Goodman, N., & Livermore, G. (2004).The effectiveness of Medicaid Buy-In programs in promoting the employment of people with disabilities: Briefing paper prepared for the: Ticket to Work and Work Incentives Advisory Panel. Washington, DC: Cornell University Institute for Policy Research.
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Gran, J. (2003) Olmstead: reclaiming institutionalized lives. Public Interest Law Center of Philadelphia for the National Council on Disability.
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Gray, L. & Feinberg, L.F.. (2003, March). Survey of Californians about in-home care services. Report, Family Caregiver Alliance, San Francisco, CA.
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Gustavson, K.A. & Scharlach, A.E. (2005, November 19). Impact of employment on caregiver and care recipient service use. Presentation at the Gerontological Society of America 58th Annual Scientific Meeting.
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Hams, M., Herold, N., Lee, M. & Worters, A. (2002). Health insurance access survey of direct-care workers in nursing homes and home-based care agencies in Boston, New Bedford/Fall River, including surveys of employees and of employers. (Final report). New York: Direct Care Workers Initiative and Paraprofessional Healthcare Institute. Retrieved March 13, 2006, from:
http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=2070
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Han, B. & Remsburg, R.E. (2006). Impact of the Medicare interim payment system on length of use in home care among patients with Medicare-only payment source.Home Health Care Services Quarterly, 24, 4, 65-79.
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Hanley, E. (2004). The role of home care in palliative care services. Care Management Journals, 5, 3, 151-157.
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Harrington, C. (2005). Long Term Care Staff and Quality of Care. Published on the Center for PAS website http://www.pascenter.org/news/Harrington_LTC_Testimony.html
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Harrington, C., Carillo, H., & Mercado-Scott, C. (2005). Nursing facilities, staffing, residents, and facility deficiencies, 1998 through 2004. University of California, San Francisco.
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Harrington, C., Chapman, S., Miller, E., Miller, N., and Newcomer, R. (2005). Trends in the supply of long-term-care facilities and beds in the United States. Journal of Applied Gerontology 24(4) 265-282.
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Harrington, C., O’Meara, J. (2004). Report on California’s Nursing Homes, Home Health Agencies, and Hospice Programs Prepared for the California HealthCare Foundation for California Nursing Home Search - www.calnhs.org. Retrieved from the Center for PAS website http://pascenter.org/documents/CCIS_Overview.pdf
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Hash, K. (2006). Caregiving and post-caregiving experiences of midlife and older gay men and lesbians.Journal of Gerontological Social Work, 47, 3/ 4, 123-138.
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Health Care for Health Care Workers. (2006). Caregivers without coverage: The facts about a critical gap in long-term care (Policy Brief no. 1). New York: Paraprofessional Healthcare Institute. Retrieved March 13, 2006, from:
http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=191010
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Hernandez, B., Keys, C., & Balcazar, F. (2000). Employer attitudes toward workers with disabilities and their ADA employment rights: A literature review. Journal of Rehabilitation, 66(4). Retrieved April 11, 2004, from http://www.findarticles.com/p/articles/mi_m0825/is_4_66/ai_68865430/print.html
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Hewitt, A. & Lakin, K. C. (2001). Issues in the direct support workforce and their connections to the growth, sustainability and quality of community supports. Research and Training Center on Community Living, University of Minnesota.
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Hinton, D. (2003, September). Personal assistance services on the job. National Collaborative on Workforce and Disability InfoBrief, issue 6.
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Hoff, D., Dreilinger, D., Fesko, S., Fichera, K., Jordan, M., Marrone, J. et. al. (2001). Access for all: A resource manual for meeting the needs of One-Stop customers with disabilities. Boston: University of Massachusetts, Institute for Community Inclusion.
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Holcomb, P., & Barnow, B. (2004). Serving people with disabilities through the Workforce Investment Act's One-Stop Career Centers. Washington, D.C.: Urban Institute.
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Holley, L.M., Montgomery, R.J.V., & Kosloski, K.D. (2004, November 19). Innovations in 33 states that address the respite worker crisis: Lessons from the ADDGS program. Poster presentation presented at the 57th Annual Scientific Meeting of the Gerontological Society of America.
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Horowitz, A., Goodman, C.R. & Reinhardt, J.P. (2004, August) Congruence between disabled elders and their primary caregivers. Gerontologist, 44 (4): 532-542.
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HRSA/Bureau of Health Professions/National Center for Health Workforce Analyses. (2004,February). Nursing Aides, Home Health Aides, and Related Health Care Occupations -- National and Local Workforce Shortages and Associated Data Needs. Health Resources and Services Administration.
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Hunt, G., Levine, C. & Naiditch, L. (2005, September). Young caregivers in the U.S.: Findings from national survey. Bethesda, MD: National Alliance for Caregiving in collaboration with United Hospital Fund.
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Infield, Donna Lind. (2004). States’ experiences implementing consumer-directed home and community services: Results of the 2004 survey of state administrators, opinion survey and telephone interviews. Washington, D.C.: National Association of State Units on Aging and The National Council on the Aging. Retrieved June 20, 2005, from http://www.consumerdirection.org/news.php
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InfoUse. (2003). Consumer direction in personal assistance services: How to work together [CD Rom & Video]. United States: Program Development Associates.
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Ireys, H., White, J., & Thornton, C. (2003). The Medicaid Buy-In Program: Quantitative measures of enrollment trends and participant characteristics in 2002. Washington, D.C.: Mathematica Policy Research, Inc.
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Jacoby, D. (2006). Caring about caring labor: An introduction. Politics & Society, 34, 1, 5-10.
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Jensen, A., & Silverstein, B. (2002). SSDI state work incentive policy demonstration projects: Purposes, principles, and issues. University of Iowa, Rehabilitation Research and Training Center on Workforce Investment and Employment Policy.
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Job Accommodation Network, Center for Personal Assistance Services (2004). Personal Assistance Services (PAS) in the Workplace. Retrieved July 7, 2004 from http://www.jan.wvu.edu/media/PAS.html.
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Johantgen, M., Trinkoff, A., Gray-Siracusa, K., Muntaner, C. & Nielsen, K. (2004). Using state administrative data to study nonfatal worker injuries: Challenges and opportunities. Journal of Safety Research, 35 (3), 30-315.
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Kadushin, G. & Egan, M. (2006). Unmet patient need in home care under managed care. Journal of Gerontological Social Work, 47, 3/ 4, 103-120.
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Kassner, E. (2006). Home and community-based long-term services and supports for older people. AARP Public Policy Institute Fact Sheet: Washington, D.C.
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Kauff, J., Kirby, G. & Pavetti, L. (2005). Linking TANF recipients with paraprofessional long-term care jobs (Issue Brief No. 8). Princeton, NJ: Mathematica Policy Research, Inc. Retrieved March 13, 2006, from:
http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=171210
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Keefe, J., Légaré, J. & Y. Carrière. (2005, November). Developing new strategies to support future caregivers of the aged in Canada: Projections of need and their policy implications. Research Paper No. 140. Hamilton, Ontario: SEDAP (Program for Research on Social and Economic Dimensions of an Aging Population).
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Keller, P. (2000). Pre-employment intentions of home care aides. Caring 19:26-31.
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Kemper, P., Komisar, H.L. & Alecxih, L. (2006). Long-term care over an uncertain future: What can current retirees expect? Inquiry, 42, 4, 335-350.
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Kiernan, W.E., Halliday, J.F., & Boeltzig, H. (2004). Economic engagement: An avenue to employment for individuals with disabilities. Boston: University of Massachusetts, Institute for Community Inclusion.
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Kitchener M., Beynon, M., & Harrington, C. (2004). Explaining the Diffusion of Medicaid Home Care Waiver Programs Using VPRS Decision Rules. Healthcare Management Science 7/3: 237-244.
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Kitchener, M., Carrillo. H., & Harrington, C. (2004). Medicaid Community-Based Programs: A Longitudinal Analysis of State Variation in Expenditures and Utilization. Inquiry, 40, 375-389.
Press release
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Kitchener, M., Ng, T., & Harrington, C. (2004) Medicaid 1915(c) Home and Community Based Services Waivers: A National Survey of Eligibility Criteria, Caps and Waiting Lists. Home Health Care Services Quarterly 23/2: 55-69.
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Kitchener, M., Ng, T., & Harrington, C. (February 2005). Medicaid Home and Community-Based Services Data, 2001. Published on the Center for PAS website: http://pascenter.org/medicaid/
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Kitchener, M., Ng, T., Grossman, B., & Harrington, C. (2005) Medicaid Waiver Programs for Traumatic Brain and Spinal Cord Injury. Journal of Health and Social Policy 20/3: 51-66
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Kitchener, M., T. Ng, N. Miller, and C. Harrington (2005). Medicaid Home And Community-Based Services: National Program Trends. Health Affairs 24(1) 206-212.
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Kitchener, M., Willmott, M. & and Harrington, C. (12/2004). Home & Community-Based Services: State-Only Funded Programs. Published on the Center for PAS website: http://pascenter.org/state_funded/
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Kitchener, M., Willmott, M. & Harrington, C. (11/2004). Home and Community-Based Services: Federal Funding to States. Published on the Center for PAS Website: http://www.pascenter.org/federal_funding_to_states
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Kitchener, M., Willmott, M. & Harrington, C. (11/2004). Home and Community-Based Services: Medicaid Research and Demonstration Waivers. Published on the Center for PAS website: http://pascenter.org/demo_waivers
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Kitchener, M., Willmott, M., & Harrington, C. (11/2004). Home and Community-Based Service Programs: Selected Robert Wood Johnson Foundation Grants to States. Published on the Center for PAS website: http://www.pascenter.org/foundation_grants/
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Kitchener, M., Willmott, M., Alameida, M and Harrington, C. (2004). Introduction to Olmstead Lawsuits and Olmstead Plans. Retrieved from http://pascenter.org/olmstead
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Kitchener, M., Willmott, M., Harrington, C. (11/2004). Federal Systems Change Grants to States and Territories: 2001-2004. Retrieved from http://pascenter.org/systemschange/
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Kregel, J., O'Mara, S., & West, M. (2003). Consumer advocacy in the implementation of the Ticket to Work Act. Richmond, VA: Virginia Commonwealth University, Rehabilitation Research and Training Center on Workplace Supports.
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LaPlante, M., Kaye, H.S., Kang, T., and Harrington, C. (2004). Unmet need for personal assistance services: Estimating the shortfall in hours of help and adverse consequences. J. Gerontol. B. Psychol. Sci. Soc. Sci. 2004 59: S98-S108.
View press release from:Accessible Society or UCSF.
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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.
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Levine, C. Hunt, G.G., Harper, D., Hart, A.Y., Lautz, J., Gould, D.A. (2005). Young adult caregivers: A first look at an unstudied population. American Journal of Public Health, 95 (9): 2071-2075.
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Li, L.W. (2005). Longitudinal changes in the amount of informal care among publicly paid home care recipients. Gerontologist, 45, 4, 465-473.
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Lin, C.J. & Meit, M. (2005). Changes in Medicare home health care use and practices in rural communities. Journal of Aging and Health, 17, 3, 351-362.
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Lipson, D. (2005, November 19). Stand up and tell them: Views from the frontline of long-term care. Media presentation at the Gerontological Society of America 58th Annual Scientific Meeting.
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Lipson, D.J. (2004). Current findings and future directions in research on homecare work issues. Healthcare & Aging, 12, 3, 2-3, 6.
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Livermore, G., Nowak, M., & Stapleton, D. (2001). The role of health insurance in successful labor force entry and employment retention. Falls Church, VA: The Lewin Group.
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Livermore, G.A. (2003). Proceedings of the Employment Network (EN) summit: Summary of work group recommendations. Washington, D.C.: Cornell Center for Policy Research.
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Lopez, S.H. (2006). Culture change management in long-term care: A shop-floor view. Politics & Society, 34, 1, 55-80.
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Loprest, P., & Maag, E. (2001). Barriers to and supports for work among adults with disabilities: Results from the NHIS-D. Washington, D.C.: Urban Institute.
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Loughlin, D.M., Simon-Rusinowitz, L., Mahoney, K.J., Desmond, S.M., Squillace, M.R. & Powers, L.E. (2004). Preference for a cash option versus traditional services for Florida children and adolescents with developmental disabilities. Journal of Disability Policy Studies, 14, 4, 229-240.
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Luecking, R.G. (2003) Doing it the company way: Employer perspectives on workplace supports. Washington, D.C.: George Washington University, HEATH Resource Center.
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Lum, T.Y. (2005). Understanding the racial and ethnic differences in caregiving arrangements. Journal of Gerontological Social Work, 45, 4, 3-21.
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Mains, D., Fairchild, T.J. & René, A.A. (2006). Cultural attitudes and caregivers service use: Lessons from focus groups with racially and ethnically diverse family caregivers. Journal of Gerontological Social Work, 47, 1/ 2, 159-175.
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Mareschal, P. (2006). Innovation and adaptation: Contrasting efforts to organize home care workers in four states. Labor Studies Journal, 31, 1, 25-49.
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Matthias, R.E. & Benjamin, A.E. (2005). “Intent to stay” among paid home care workers in California. Home Health Care Services Quarterly, 24, 3,39-57.
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Matthias, R.E. & Benjamin, A.E. (2003). Abuse and neglect of clients in agency-based and consumer-directed home care. Health Social Work, 28, 3, 174-184.
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McDowell, R.W. All 50 states' and D.C.'s home pages and Workers' Compensation agencies. Retrieved November 2, 2005, from http://www.comp.state.nc.us/ncic/pages/all50.htm. Date last updated: October 28, 2005.
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McMillan, S.C., Small, B.J., Weitzner, M., Schonwetter, R., Tittle, M., Moody,L. & Haley, W.E. (2006, January). Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer, 106 (1), 214-222.
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McPhaul, K. (2004, September). Home care security: Nurses can take simple precautions to ensure safety during home visits. American Journal of Nursing, 104 (9), 96.
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McPhaul, K., Zanoni, J., Glassman, M., Kaufman, K., Lipscomb, J., Nickels, L., Vega, L., Johnson, J., Sokas, R. & Vasireddy, L. (2005, December 12). Focus groups of union home care workers and blood exposure. Presentation at the 133rd Annual Meeting of the American Public Health Association.
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Meagher, G. (2006). What can we expect from paid carers? Politics & Society, 34, 1, 33-54.
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Meyer, J.D. & Muntaner, C. (1999). Injuries in home health care workers: An analysis of occupational morbidity from a state compensation database. American Journal of Industrial Medicine, 35 (3),295-301.
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Montgomery, R.J.V., Holley, L., Deichert, J. & Kosloski, K. (2005). A profile of home care workers from the 2005 Census: How it changes what we know. Gerontologist, 45 (5), 593-600.
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Moss, H. (August 13, 2004). Bridging the gap between the needs of clients and the skills of the workforce in Oregon. Paper presented at Carework Conference, San Francisco, CA.
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Muntaner, C., Li, Y., Xue, X., O’Campo, P., Chung, H.J. & Eaton, W.W. (2004). Work organization, area labor-market characteristics, and depression among U.S. nursing home workers: a cross-classified multilevel analysis. International Journal of Occupational and Environmental Health, 10 (4), 392-400.
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National Council on Disability (2004). Consumer directed health care: How well does it work? National Council on Disability, Washington, D.C. (207 pages)
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National Council on Disability. (2005, December). The state of 21st century long-term services and supports: Financing and systems reform for Americans with disabilities. Washington: National Council on Disability.
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National Council on Disability. (2004, October 26). Consumer-directed health care: How well does it work? Washington, D.C.: National Council on Disability. Retrieved August 5, 2005, from http://www.ncd.gov/newsroom/publications/2004/publications.htm
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Navaie-Waliser, M., Feldman, P.H., Gould, D.A., Levine, C. Kuerbis, A.N. & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92 (3), 409-413.
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Navaie-Waliser, M., Feldman, P.H., Gould, D.A., Levine, C., Kuerbis, A.N. & Donelan, K. (2001). The experiences and challenges of informal caregivers: Common themes and differences among whites, blacks and Hispanics. Gerontologist, 41 (6), 733-741.
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Navaie-Waliser, M., Spriggs, A., & Feldman P.H. (2002). Informal caregiving—Differential experiences by gender. Medical Care, 40 (12), 1249-1259.
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Newcomer, R., Graham, C.G., Sotelo, E., Anderson, L. (2004) Nursing Home Transition: Implementing the Program Providing Assistance to Caregivers in Transition (PACT) Published on the Center for PAS website.
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Newcomer, R., Kang, T., LaPlante, M., and Kaye, S. (2005). Living quarters and unmet need for personal care assistance among adults with disabilities. Journal of Gerontology: Social Sciences, 60B(4): S205-S213.
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Ng, T., Kitchener, M., and Harrington, C. (2004). Medicaid Home Care Waivers for Persons with HIV/AIDS: Program Expenditures, Participants and Policies. AIDS and Public Policy Journal 19/3,4: 95-109
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Ng, T., Kitchener, M., and Harrington, C. (2004). Medicaid home care waivers for persons with HIV/AIDS: Program expenditures, participants and policies. AIDS and Public Policy Journal 19/3,4: 95-109
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O'Brien, D., Revell, G., & West, M. (2003). The impact of the current employment policy environment on the self-determination of individuals with disabilities. Journal of Vocational Rehabilitation, 19(2), 105-118.
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Oktay, J.S. & Tompkins, C.J. (2004). Personal assistance providers’ mistreatment of disabled adults. Health and Social Work, 29, 3, 177-188.
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Pandya, S.M. (2005). Racial and ethnic differences among older adults in long-term care service use. AARP Public Policy Institute Fact Sheet: Washington, D.C.
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Paraprofessional Healthcare Institute & The Institute for the Future of Aging Services. (2005). The role of training in improving the recruitment and retention of direct-care workers in long-term care. (Workforce Strategies No. 3)New York: Paraprofessional Healthcare Institute. Retrieved March 13, 2006, from:
http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=150710
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Paraprofessional Healthcare Institute. (2003). Personal assistance services and direct-support workforce: A literature review. New York: Paraprofessional Healthcare Institute. Retrieved March 13, 2006, from:
http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=60610
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Paraprofessional Healthcare Institute. (2004). Employing, supporting, and retaining your personal assistant: An orientation workshop for people with disabilities. New York: Paraprofessional Healthcare Institute. Retrieved March 13, 2006, from:
http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=87410
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Paraprofessional Healthcare Institute. (2005, January). The role of training in improving the recruitment and retention of direct-care workers in long-term care. Workforce Strategies, No. 3. Paraprofessional Healthcare Institute, New York.
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Paraprofessional Healthcare Institute. (2006). Peer mentoring: A workshop series for direct-care workers in home and residential care. Paraprofessional Healthcare Institute Teaching Tool: Bronx, NY.
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Parker, M. & Bergmark, E. (2004). Reforming the system for workers providing homecare. Healthcare & Aging, 11, 4, 3-7.
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Piercy, K.W. & Dunkley, G.J. (2004). What quality paid home care means to family caregivers. Journal of Applied Gerontology, 23, 3, 175-192.
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Pita, D.D., Ellison, M.L., Farkas, M., & Bleecker, T. (2001). Exploring personal assistance services for people with psychiatric disabilities. Journal of Disability Policy Studies, 12(1), 2-9.
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Porter, E.J., Ganong, L.H., Drew, N. & Lane, T.I. (2004). A new typology of home-care helpers. Gerontologist, 44 (6): 750-759.
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President of the United States (2004). New Freedom Initiative: A progress report. Washington, DC: Author.
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Presidential Task Force on Employment of People with Disabilities (2002). People with disabilities: Strengthening the 21st century workforce. Washington, DC: Author.
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Priester, R. & Reinardy, J. R. (2003). Recruiting immigrants for long-term care nursing positions. Journal of Aging and Social Policy, 15(4), 1-19.
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Promising practices: Home and community-based services for the elderly and people with disabilities. Various authors, National Conference of State Legislators, 2002
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Purdin, L., Liese, H., & Lehmann, S. (2003). Employer perception of need when hiring and retaining people with disabilities, Salt Lake City, UT: Utah Governor’s Committee on Employment of People with Disabilities.
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Ranney, M. (2005). The cultures of caregiving: Conflict and common ground among families, health, professionals, and policy makers. (Book review). Journal of Women & Aging, 17, 3, 109.
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Redfoot, D.L. & Houser, A.N. (2005). “We shall travel on”: Quality of care, economic development, and the international migration of long-term workers. AARP Public Policy Institute Issue Paper: Washington, D.C.
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Rosenbaum, S & Teitelbaum, J. (2004). Olmstead at five: Assessing the impact Kaiser Commission on Medicaid and the Uninsured.The Kaiser Family Foundation, Washington D.C. (34 pages)
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Rosenbaum, S, Burke, T & Teitelbaum, J. (2003) The Americans with Disabilities Act and community integration: An update on "Fundamental Alteration" litigation. Center for Health Care Strategies, Inc.
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San Antonio, P.M., Eckert, J.K. & Simon-Rusinowitz, L. (2006). The importance of relationship: Elders and their paid family caregivers in the Arkansas Cash and Counseling Qualitative Study. Journal of Applied Gerontology, 25, 1, 31-48.
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Sanders, S. & Adams, K.B. (2005). Grief reactions and depression in caregivers of individuals with Alzheimer’s disease: Results from a pilot study in an urban setting. Health and Social Work, 30, 4, 287-295.
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Scharlach, A., Sirotnik, B., Bockman, S., Neiman, M., Ruiz, C. & Dal Santo, T. (2003, February) A profile of family caregivers: Results of the California statewide survey of caregivers. Center for the Advanced Study of Aging Services, University of California Berkeley, Berkeley, CA
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Scharlach, A.E., Kellam, R., Ong, N., Baski, A., Goldstein, C. & Fox, P.J. (2006). Cultural attitudes and caregivers service use: Lessons from focus groups with racially and ethnically diverse family caregivers. Journal of Gerontological Social Work, 47, 1/ 2, 135-158.
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Scherzer, T. (2005, December 13). Homecare workers’ experiences of and responses to occupational injury: Preliminary results from a qualitative study. Presented at the 2005 American Public Health Association 133rd Annual Meeting.
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Scherzer, T., Chapman, S. & Newcomer, R. (n.d.). Integrating occupational health and safety into the PAS workforce research agenda. In S. Kunkel and V. Wellin, (Eds.), Consumer Voice and Choice in Long-Term Care. New York: Springer. Manuscript in press.
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Scherzer, T., Chapman, S., & Newcomer, R. ( June, 2004 ) Lost-worktime injuries and illnesses of Nursing Aides, Orderlies, and Attendants. Published on the Center for PAS website.
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Scherzer, T., Chapman, S., Newcomer, R. (2004). Workforce Development Projects in Personal Assistance Services. Published on the Center for PAS website http://pascenter.org/state_based_stats/workforce_projects_inventory_home.php
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Sciegaj, M., Capitman, J.A. & Kyriacou, C.K. (2004, August). Consumer-directed community care: Race/ethnicity and individual differences in preferences for control. Gerontologist, 44 (4): 489-499.
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Seavey, D. (2004, October). The cost of frontline turnover in long-term care. Better Jobs Better Care Practice & Policy Report: 1-3.
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Seavey, D. & Nakhnikian, E. (2005). Family care and paid care: Separate worlds or common ground? (Better Jobs Better Care Issue Brief No. 5). Washington, D.C.: Institute for the Future of Aging Services. Retrieved March 13, 2006, from:
http://www.bjbc.org/Page.asp?PgID=27#Issue_Briefs
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Service Employees International Union. (2005). Working together for quality personal care.Service Employees International Union. Retrieved March 13, 2006, from:
http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=170310
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Shireman, T.I. & Rigler, S.K. (2004). Penny wise, pound wise: A comparison of Medicaid expenditures for home and community-based services versus nursing facility care for older adults. Home Health Care Services Quarterly, 23, 4, 15-28.
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Silverstein, R. (2003). The applicability of the ADA to personal assistance in the workplace. (Policy Brief). Boston, MA: The Institute for Community Inclusion.
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Spandler, H. & Vick, N. (2006). Opportunities for independent living using direct payments in mental health. Health and Social Care in the Community, 14, 2, 107-115.
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Sparks, L., Travis, S.S. & Thompson, S.R. (2005). Listening for the communicative signals of humor, narratives, and self-disclosure in the family caregiver interview. Health and Social Work, 30, 4, 340-343.
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Spillman, B.C. & Black, K.J. (2005). Staying the course: Trends in family caregiving. AARP Public Policy Institute Issue Paper: Washington, D.C.
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Stacey, C.L. (2005). Finding dignity in dirty work: The constraints and rewards of low-wage home care labour. Sociology of Health & Illness, 27 (6), 831-854.
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Stapleton, D., Nowak, M., & Livermore, G. (2001). The role of supports in successful labor force entry for youth with disabilities. Falls Church, VA: The Lewin Group.
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Stone, R.I. (2004). The direct care worker: the third rail of home care policy. Annual Reviews of Public Health, 25, 21-37.
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Strobel, W., & McDonough, J. (2003). Workplace personal assistance service and assistive technology. Journal of Vocational Rehabilitation, 18, 1007-112.
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Summer, L., Friedland, R., Mack, K. & Mathieu, S. (2004, August). Measuring the years: State aging trends and indicators. Center on an Aging Society Health Policy Institute, Georgetown University, For the National Governors Association Center for Best Practices, Washington, D.C.
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Sweeney, E. P. (2004). SSA's disability demonstration projects likely to provide important information about disability work incentives. Washington, DC: Center on Budget and Policy Priorities.
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The Employment Policy Group (2003). Using workplace personal assistance to improve recruiting and retention. Des Moines, IA: University of Iowa, Center for Disabilities and Development.
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The Lewin Group, Inc. (2001). Research on employment supports for people with disabilities: Summary of the focus group findings. Washington, D.C.: U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP).
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Ticket to Work and Work Incentives Advisory Panel (2004). Advice report to Congress and the Commissioner of the Social Security Administration: The crisis in EN participation—a blueprint for action. Washington, DC: Author.
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Ticket to Work and Work Incentives Advisory Panel (2004). Annual report to the President and Congress: Year Four. Washington, DC: Author.
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Tilly, J. (2005). Recent research on consumer-directed home care in the Netherlands, England, Germany and the United States. Australasian Journal on Ageing, 24, s1, S59-S59.
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Toseland, R.W. (2004). Caregiver education and support programs: Best practice models.San Francisco, CA.: Family Caregiver Alliance. Retrieved March 13, 2006, from:
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1314
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Trinkoff, A.M., Johantgen, M., Muntaner, C. & Le, R. (2005). Staffing and worker injury in nursing homes. American Journal of Public Health, 95, 7, 1220-1225.
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Tritz, K. (2004, February). Long-term care: Consumer directed services under Medicaid. Congressional Research Service Report, Order Code: RL32219.
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Tritz, Karen. (2005). Long-term care: Consumer-directed services Under Medicaid. Congressional Research Service, Order Code RL 32219. Retrieved June 29, 2005, from http://www.law.umaryland.edu/marshall/crsreports/index.asp?AlphaStart=L
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Turner, E., Revell, G., & Brooke, V. (n.d.) Personal assistance in the workplace: A customer-directed guide. Richmond, VA: Virginia Commonwealth University.
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U.S. General Accounting Office (2003). Medicaid and Ticket to Work: States' early efforts to cover working individuals with disabilities. (GAO-03-587). Washington, DC: U.S. General Accounting Office.
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University of Massachusetts, Boston, Institute for Community Inclusion. ( n.d.) "Show me the money": Flexible funding for job success. Retrieved April 8, 2005, from the Institute for Community Inclusion Web site, http://www.communityinclusion.org/publications/flex_funding/
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University of Nebraska Public Policy Center. (June 2003). Intermediary service organizations providing personal assistance services: Implementing lessons . Report prepared for the Medicaid Infrastructure Grant Program, Nebraska Department of Health and Human Services.
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USDHHS and ASPE. ( May 14, 2003 ). The future supply of long-term care workers in relation to the aging baby boom generation. Report to Congress.
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van Bilsen, P.M.A., Hamers, J.P.H., Spreeuweberg, C. & Groot, W. (2005, November 21). Consumers’ and family caregivers’ perspectives on community-based homecare and welfare services: A acceptable alternative for residential care? Poster presentation at the Gerontological Society of America 58th Annual Scientific Meeting.
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Wang, P.P., Badley, E.M., & Gignac, M.A. (2004). Perceived need for workplace accommodation and labor-force participation in Canadian adults with activity limitations. American Journal of Public Health, 94(9), 1515-1518.
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Wehman, P. & Revell, W. (2003). The Ticket to Work Program: Marketing strategies and techniques to enhance implementation. Richmond, VA: Virginia Commonwealth University, Rehabilitation Research and Training Center.
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Weissert, W.G., Cready, C.M. & Pawelak, J.E. (2005). The past and future of home- and community-based long-term care. The Milbank Quarterly, 83, 4, Online-only.
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Whittier, S., Scharlach, A.E. & Dal Santo, T.S. (2005). Availability of caregiver support services: Implications of the National family Caregiver Support Program. Journal of Aging & Social Policy, 17 (1), 45-62.
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Wittenburg, D. (2004, September). A health-conscious safety net? Health problems and program use among low-income adults with disabilities. (New Federalism: National Survey of America's Families, Series B, No. B-62). Washington, DC: Urban Institute.
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Yamada, Y. & Sekiya, M. (2003). Licensing and training requirements for direct care workers in Japan: what can the United States and Japan learn from each other? Journal of Aging and Social Policy, 15(4), 113-29.
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Yamada, Y. (2001). Consumer direction in community-based long-term care: Implications for different stakeholders. Journal of Gerontological Social Work, 35(3), 83-97.
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Yamada, Y. (2002). Profile of home care aides, nursing home aides, and hospital aides: Historical changes and data recommendations. Gerontologist 42, 199-206.
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Yoshida, K., Willi, V., Parker, I. & Locker, D. (2004). The emergence of self-managed attendant services in Ontario: Direct funding pilot project—An independent living model for Canadians requiring attendant services. Research in the Sociology of Health Care, 22, 177-204.
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Young, L. & Newman, S. (2003, December). Caregiving and retirement planning: What happens to family caregivers who leave the workforce (Policy Brief). San Francisco, CA: Family Caregiver Alliance.
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Zola, I.K. (2005). Toward the necessary universalizing of a disability policy. The Milbank Quarterly, 83, 4, Online-only.
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Zwerling, C., Whitten, P., Sprince, N., Davis, C., Wallace, R., Blanck, P., & Heeringa, S. (2003). Workplace accommodations for people with disabilities: National Interview Survey Disability Supplement 1994-1995. Journal of Occupational and Environmental Medicine, 45, 517-525.
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