Library

U.S. Department of Health and Human Services. (2011, October). A Report on the Actuarial, Marketing and Legal Analyses of the CLASS Program. Washington, DC: Author.

Feinberg, L. & Reamy, A.M. (2011, October). Health Reform Law Creates New Opportunities to Better Recognize and Support Family Caregivers. (Fact sheet 239). Washington, DC: AARP Public Policy Institute.

Newcomer, R.J., Kang, T. & Doty, P. (2011, October). Allowing Spouses to Be Paid Personal Care Providers: Spouse Availability and Effects on Medicaid-Funded Service Use and Expenditures. The Gerontologist. doi: 10.1093/geront/gnr102

Reinhard, S.C., Kassner, E., Houser, A. and Mollica, R. (2011, September). Raising expectations: A state scorecard on long-term services and supports for older adults, people with physical disabilities and family caregivers. Washington, DC: AARP.

Cynkar, P. & Mendes, E. (2011, July). More than one in six American workers also act as caregivers. Washington, DC: Gallup.com.

Feinberg, L., Reinhard, S.C., Houser, A. and Choula, R. (2011, July). Valuing the invaluable: 2011 update - the growing contributions and costs of family caregiving. Washington, DC: AARP Public Policy Institute.

Holly, C. Felix, H.C., Mays, G.P., Stewart, K.M., Cottoms, N. and Olson, M. (2011, July). Medicaid Savings Resulted When Community Health Workers Matched Those With Needs To Home And Community Care. Health Affairs, Vol. 30 No. 7, pp.1366-1374. doi: 10.1377/hlthaff.2011.0150

Mendes, E. (2011, July). Most caregivers look after elderly parent; invest a lot of time. Washington, DC: Gallup.com.

Witters, D. (2011, July). Caregiving costs U.S. economy $25.2 billion in lost productivity. Washington, DC: Gallup.com.

The Arc. (2011, June). Still in the shadows with their future uncertain: A report on family and individual needs for disability supports. Summary of key findings and a call to action. Washington, DC: Author.

MetLife Mature Market Institute. (2011, June). The MetLife study of caregiving costs to working caregivers: Double jeopardy for baby boomers caring for their parents. New York, NY: Author.

United States Government Accountability Office. (2011, June). Nursing homes: Private investment homes sometimes differed from others in deficiencies, staffing, and financial performance. (GAO-11-571). Washington, DC: Author.

Zarit, S.H., Kim K., Elia E. Femia, E.E., Almeida, D.M., Savla, J. and Molenaar, P.C.M. (2011, June). Effects of Adult Day Care on Daily Stress of Caregivers: A Within-Person Approach. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences. . doi: 10.1093/geronb/gbr030

The SCAN Foundation. (2011, May). Opportunities for transforming California’s system of home and community-based services. Background paper prepared for the Assembly Committee on Aging and Long-Term Care. Long Beach, CA: Author. Retrieved May, 2011 from http://www.thescanfoundat ion.org/foundation-public ations/scan-foundation-ba ckground-paper-may-17-cal ifornia-assembly-committe e-aging-

The SCAN Foundation. (2011, May). Transforming California's system of care for older adults and people with disabilities: A look at the state's administrative and fiscal organization. (Policy Brief #5). Long Beach, CA: Author. Retrieved May, 2011 from http://www.thescanfoundat ion.org/foundation-public ations/policy-brief-5-tra nsforming-california’s- system-care-older-adults- and-people

Anderson, L., Larson, S.A. and Wuorio, A. (2011, May). 2010 FINDS national survey technical report part 1: Family caregiver survey. Minneapolis, MN: University of Minnesota, Research and Training Center on Community Living.

Fox-Grage, W and Redfoot, D. (2011, May). Medicaid: A program of last resort for people who need long-term services and supports. Washington, DC: AARP Public Policy Institute.

Kassner, E. (2011, May). Home and community-based long-term services and supports for older people. Washington, DC: AARP Public Policy Institute.

National Consumer Voice for Quality Long-Term Care. (2011, March). Piecing Together Quality Long-Term Care: A Consumer’s Guide to Choices and Advocacy. Washington, DC: Author. Retrieved March, 2011 from http://www.theconsumervoi ce.org/piecing-together-q uality-long-term-care

PHI. (2011, March). Health Care Coverage for Direct-Care Workers: 2009 Data Update Bronx, New York: Author.

Khatutsky, G., Wiener, J., Anderson, W., Akhmerova, V., Jessup, E.A. & Squillace, M.R. (2011, March). Understanding direct care workers: A snapshot of two of America’s most important jobs certified nursing assistants and home health aides. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. Retrieved May, 2011 from http://aspe.hhs.gov/daltc p/reports/2011/CNAchart.h tm

Powers, E.T. (2011, March). Should Government Subsidize Caregiver Wages? Some Evidence on Worker Turnover and the Cost of Long-Term Care in Group Homes for Persons With Developmental Disabilities. Journal of Disability Policy Studies, vol., pp.195-209. doi: 10.1177/1044207310389176

PHI. (2011, February). Fact sheet: Who are direct-care workers? Bronx, New York: Author. Retrieved March, 2011 from http://www.directcareclea ringhouse.org/l_art_det.j sp?res_id=306110

National Alliance for Caregiving. (2011, January). e-Connected Family Caregiver: Bringing Caregiving into the 21st Century. Washington, DC: Author.

National Alliance for Caregiving. (2011, January). e-Connected Family Caregiver: Bringing Caregiving into the 21st Century. Washington, DC: Author.

Bryan, M.L. (2011, January). Access to Flexible Working and Informal Care. Essex, UK: University of Essex, Institute for Social and Economic Research.

Kietzman, K.G., Wallace, S.P., Durazo, E., Torres, J., Soon Choi, A., Benjamin, A.E. & Mendez-Luck, C.A. (2011, January). Holding On: Older Californians with Disabilities Rely on Public Services to Remain Independent. Los Angeles, CA: UCLA Center for Health Policy Research.

Elliott, T.R., Phillips, C.D., Patnaik, A., Naiser, E., Booth, E.A., Fournier, C.J., Miller, T.R., Moudouni, D.M., Hawes, C. & Dyer, J.A. (2011). Medicaid personal care services and caregivers’ reports of children’s health: The dynamics of a relationship. Health Services Research.

Ogg, M. (2011). Running out of time, money and independence? Health Affairs, 30(1), pp.173-176.

Phillips, C.D., Patnaik, A., Dyer, J.A., Naiser, E., Hawes, C., Fournier, C.J. and Elliott, T.R. (2011). Reliability and the measurement of activity limitations (ADLs) for children with special health care needs (CSHCN) living in the community. Disability and Rehabilitation.

Reinhard, S.C., Kassner, E. and Houser, A. (2011). How the Affordable Care Act can help move states toward a high-performing system of long-term services and supports. Health Affairs , 20, pp.3447-3453.

Seavey, D. (2010-2011, Winter). Caregivers on the front line: Building a better direct-care workforce. Generations, 34(4), pp.27-35.

Seavey, D. (2010-2011, Winter). Caregivers on the front line: Building a better direct-care workforce. GENERATIONS – Journal of the American Society on Aging, 34(4), pp.27-35.

Berthoud, R. (2010, November). The Take-Up of Carer's Allowance: A Feasibility Study. Essex, UK: University of Essex, Institute for Social and Economic Research.

Kaye, H.S. (2010, October). The impact of the 2007–09 recession on workers with disabilities. Monthy Labor Review, 133(10), pp.19-30.

Fosset, J.W. and Burke, C.E. (2010, August). Medicaid Policy and Long-Term Care Spending: An Interactive View. Albany, NY: Health Policy Research Center, State University of New York.

Friedman, E.M. & Seltzer, J.A. (2010, August). Providing for Older Parents: Is It a Family Affair? Los Angeles, CA: California Center for Population Research. Retrieved 40416 from http://papers.ccpr.ucla.e du/papers/PWP-CCPR-2010-0 12/PWP-CCPR-2010-012.pdf

The HSC Foundation. (2010, May). The Overlooked Caregiver: A Series of Listening Sessions. Washington, DC: Author. Retrieved August, 2010 from http://www.hscfoundation. org/aboutus/publications/ caregivers_brief.pdf

The HSC Foundation. (2010, May). The Overlooked Caregiver: A Series of Listening Sessions. Washington, DC: Author.

Napoles, A.M., Chadiha, L., Eversley, R. & Moreno-John G. (2010, May). Reviews: Developing culturally sensitive dementia caregiver interventions: are we there yet? American Journal of Alzheimer's Disease and Other Dementias, 25(5), pp.389-406. doi: 10.1177/1533317510370957

Norton, M.C., Smith, K.R., Østbye, T., Tschanz J.T., Corcoran, C., Schwartz, S., Piercy, K.W., Rabins, P.V., Steffens, D.C., Skoog, I., Breitner, J.C.S. & Welsh-Bohmer, K.A. (2010, May). Greater risk of dementia when spouses have dementia? The Cache County Study. Journal of American Geriatrics Society, 58(5), pp.895-900. doi: 10.1111/j.1532-5415.2010.02806.x

Triantafillou, J., Naiditch, M., Repkova, K., Stiehr, K., Carretero, S., Emilsson, T., Di Santo, P., Bednarik, R., Brichtova, L., Ceruzzi, F., Cordero, L., Mastroyiannakis, T., Ferrando, M., Mingot, K., Ritter, J. & Vlantoni, D. (2010, May). Informal care in the long-term care system. European Overview Paper. (Grant agreement no. 223037). Athens/Vienna: Interlinks. Retrieved August, 2010 from http://www.euro.centre.or g/data/1278594816_84909.p df

Minnesota Department of Human Services, Disability Services Division. (2010, March). Personal Care Assistance Services - A Report to the 2010 Minnesota Legislature. St. Paul, MN: Author. Retrieved 40340 from http://www.dhs.state.mn.u s/main/groups/disabilitie s/documents/pub/dhs16_149 239.pdf

Anderson, G. (2010, February). Chronic Care: Making the Case for Ongoing Care Princeton, NJ: Robert Wood Johnson Foundation.

Wallace SP, Padilla-Frausto DI, Mendez-Luck CA, Benjamin AE, Durazo E, Pourat N. (2010, February). Budget Proposals Turn Back Clock 30 Years in Long-Term Care Services for California Seniors. Los Angeles, CA: UCLA Center for Health Policy Research. Retrieved June 10th, 2010 from http://www.healthpolicy.u cla.edu/pubs/files/Budget Proposals_2010_PB_021610. pdf

Steenhausen, S. (2010, January). California's Proposed 2010-2011 Budget: Senior-Related Program Reductions. (Fact sheet, No.1.). Long Beach, CA: The SCAN Foundation.

Fournier, C.J., Davis, M.J., Patnaik, A., Elliott, T.R., Dyer, J.A., Jasek, E.E. & Phillips, C.D. (2010). Modeling caregivers' perceptions of children's need for formal care: Physical function, intellectual disability and behavior. Disability and Health Journal, 3, pp.213-221.

Meng, H., Friedman, B., Wamsley, B.R., Van Nostrand, J.F. & Eggert, G.M. (2010). Choice of personal assistance services providers by Medicare beneficiaries using a consumer-directed benefit: rural-urban differences. The Journal of Rural Health, 26,, pp.392-401.

San Francisco. (2010). Health Care Reform and Family Caregivers. Family Caregiver Alliance: Author. Retrieved 40387 from http://www.caregiver.org/ caregiver/jsp/content_nod e.jsp?nodeid=2397

Family Caregiver Alliance. (2010). Health Care Reform and Family Caregivers. San Francisco: Author. Retrieved 40370 from http://caregiver.org/care giver/jsp/content_node.js p?nodeid=2397

Coughlin J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being. Outcomes & Insights in Health Management , 2(1), pp.40185.

Marziali, E., McCleary, L. & Streiner, D.L. (2010). Evaluation of an Assessment Battery for Estimating Dementia Caregiver Needs for Health and Social Care Services. American Journal of Alzheimer's Disease and Other Dementias, 25(5), pp.446-445.

Nyberg, J.P. (2010, Spring). Community College and Caregiver Training: Implications for Policymakers. (Caregiving Brief). New York, NY: International Longevity Center USA. Retrieved 40262 from http://www.ilcusa.org/pag es/publications/caregivin g/community-colleges-and- caregiver-training-implic ations-for-policymakers.p hp

Bornstein, S. & Rathmell, R.J. (2009, December). Caregivers as a Protected Class?: The Growth of State and Local Laws Prohibiting Family Responsibilities Discrimination. San Francisco, CA: University of California, Hastings College of Law. Retrieved 40164 from http://www.worklifelaw.or g/pubs/LocalFRDLawsReport .pdf

Okumura, M.J., Van Cleave, J., Gnanasekaran, S., & Houtrow, A. (2009, December). Understanding Factors Associated with Work Loss for Families Caring for CSHCN. Pediatrics, 124. doi: 10.1542/peds.2009-1255J

National Alliance for Caregiving. (2009, November). Caregiving in the U.S. 2009: Executive Summary. Bethesda, MD: Author. Retrieved 40164 from http://www.caregiving.org /data/CaregivingUSAllAges ExecSum.pdf

Paraprofessional Healthcare Institute. (2009, October). New York City's Home Care Workforce: State Facts. Bronx, NY: Author.

Paraprofessional Healthcare Institute. (2009, October). Pennsylvania's Direct-Care Workforce: State Facts. Bronx, NY: Author.

Shriver, M. & Center for American Progress. (2009, October). The Shriver Report: A Woman's Nation Changes Everything. Washington, D.C.: Center for American Progress.

Solovieva, T.I., Walls, R.T., Hendricks, D.J. & Dowler, D.L. (2009, October). Cost of workplace accommodations for individuals with disabilities: With or without personal assistance services. Disability and Health Journal, 2(4), pp.196-205.

Paraprofessional Healthcare Institute. (2009, September). Massachusetts' Direct-Care Workforce: State Facts. Bronx, NY: Author.

Paraprofessional Healthcare Institute. (2009, September). Iowa's Direct-Care Workforce: State Facts. Bronx, NY: Author.

PHI, PolicyWorks. (2009, September). Illinois's Direct-Care Workforce - State Facts. Bronx, NY: Author.

PHI, PolicyWorks. (2009, September). Iowa's Direct-Care Workforce - State Facts. Bronx, NY: Author.

PHI, PolicyWorks. (2009, September). Massachusetts's Direct-Care Workforce - State Facts. Bronx, NY: Author.

Kaiser Commission on Medicaid and the Uninsured. (2009, September). Advancing Access to Medicaid Home and Community-Based Services: Key Issues Based on a Working Group Discussion with Medicaid Experts. Washington, DC: Author. Retrieved 40078 from http://www.kff.org/medica id/7970.cfm

Marin, B., Leichsenring, K., Rodrigues, R. & Huber, M. (2009, August). Who Cares? Care Coordination and Cooperation to Enhance Quality in Elderly Care in the European Union. Vienna, Austria: European Centre for Social Welfare Policy and Research.

Wells, S., Hedt, A., Chapman, S., Bakerjian, D., Fagin, C.M., Bryant, N., Toten, A., Goldbert, L. & Ruff, A. (2009, August). Perspectives On: Investing in California's Direct Care Workforce by Increasing Geriatric Training Opportunities. Long Beach, CA: The SCAN Foundation.

Paraprofessional Healthcare Institute. (2009, July). Illinois' Direct-Care Workforce: State Facts. Bronx, NY: Author.

Paraprofessional Healthcare Institute. (2009, July). State chart book on wages from personal and home care aides, 1999-2008. Bronx, NY: Author.

Clinton, B., DeGaetano, E., Foster, A., Lautz, C.A., Ryan, L.A., Sullivan, C., Wasserman, K. & Reynolds, L. (2009, May). When no one cares: Why we need to save Connecticut's direct care workforce. Norwich, CT.: Senior Resources Agency on Aging.

Gibson, B.E., Brooks, D., DeMatteo, D. & King, A. (2009, May). Consumer-directed personal assistance and 'care': Perspectives of workers and ventilator users. Disability & Society, 24(3), pp.317-330.

National Alliance for Caregiving. (2009, April). The Evercare® Survey of the Economic Downturn and its Impact on Family Caregiving. Bethesda, MD: Author. Retrieved 40164 from http://www.caregiving.org /data/EVC_Caregivers_Econ omy_Report%20FINAL_4-28-0 9.pdf

Genworth Financial, Inc. (2009, April). Genworth 2009 Cost of Care Survey: Home Care Providers, Adult Day Health Care Facilities, Assisted Living Facilities and Nursing Homes. Richmond, VA: Author.

Hokenstad, A. Shineman, M. & Auerbach, R. (2009, April). An Overview of Medicaid Long-Term Care Programs in New York. New York, NY: Medicaid Institute at United Hospital Fund.

Paraprofessional Healthcare Institute. (2009, march). Vermont's Direct-Care Workforce: State Facts. Bronx, NY: Author.

PHI Northern New England. (2009, March). Vermont's Direct-Care Workforce - State Facts. Vermont: Author.

Toleos, A. (2009, March). Report Offers Workforce Data Collection Recommendations for Long-Term Care [press release]. Retrieved 23rd June, 2010 from http://phinational.org/ar chives/report-offers-work force-data-collection-rec ommendations-for-ltc/

Cardin, D. (2009, February). Report Offers Complete Look at Issues Facing Direct-Care Workforce. Retrieved 23rd June, 2010 from http://phinational.org/ar chives/report-offers-comp lete-look-at-issues-facin g-direct-care-workforce/

Paraprofessional Healthcare Institute. (2009, January). Who Are Direct Care Workers? Bronx, NY: Author.

Carers New South Wales. (2009). Invisible carers come into focus: A summary of the National Health and Hospitals Reform Commission Final Report 2009. Sydney, Australia: Author.

National People with Disabilities and Carer Council. (2009). Shut out: The experience of people with disabilities and their families in Australia. Sydney, Australia: Author.

D'Souza, J.C., James, M.L., Szafara, K.L., Fries, B.E. (2009). Hard times: The effects of financial strain on home care services use and participant outcomes in Michigan. Gerontologist, 49(2), pp.154-165.

Diefenbach, G.J., Tolin, D.F., Meunier, S.A. & Gilliam, C.M. (2009). Assessment of anxiety in older home care recipients. Gerontologist, 49(2), pp.141-153.

Gray, D.B., Dashner, J.L., Morgan, K.A., Lyles, M., Scheller, M.D., Morris, C.L. & Hollingsworth, H.H. (2009). Influence of a consumer-directed personal assistance services program on the lives of persons with mobility impairments. Disability and Health Journal, 2(4), pp.188-195.

Greene Burger, S., Kantor, B., Mezey, M., Mitty, E., Kluger, M., Algase, D., Anderson, K., Beck, C., Mueller, C. & Rader, J. (2009). Professional nurses involvement in nursing home culture change: Overcoming barriers, advancing opportunities. New York, NY: Hartford Institute for Geriatric Nursing.

Hayashi, J., DeCherrie, L., Ratner, E. & Boling, P.A. (2009). Workforce development in geriatric home care. Clinics in Geriatric Medicine, 25(1), pp.109-120.

Kaye, H.S. (2009). Stuck at the bottom rung: Occupational characteristics of workers with disabilities. Journal of Occupational Rehabilitation, 19(2), pp.115-128.

Kemp, C.L., Ball, M.M., Perkins, M.M., Collingsworth, C. & Lepore, M.J. (2009). I get along with most of them: Direct care workers' relationships with residents' families in assisted living. Gerontologist, 49(2), pp.224-235.

Mittal, V., Rosen, J. & Leana, C. (2009). A dual-driver model of retention and turnover in the direct care workforce. Gerontologist, 49(5), pp.623-634.

Morris, L. (2009). Quits and job changes among home care workers in Maine: The role of wages, hours, and benefits. Gerontologist, 49(5), pp.635-650.

Mullan, J.T., Grossman, B.R., Hernandez, M., Wong, A., Eversley, R. & Harrington, C. (2009). Focus Group Study of Ethnically Diverse Low Income- Users of Paid Personal Assistance Services. Home Health Care Services Quarterly, 28(1), pp.24-44.

Prideaux, S., Roulstone, A., Harris, J. & Barnes, C. (2009). Disabled people and the self-directed support schemes: Reconceptualising work and welfare in the 21st century. Disability & Society, 24(5), pp.557-569.

Rhee, Y., Degenholtz, H.B., Lo Sasso, A.T. & Emanuel, L.L. (2009). Estimating the quantity and economic value of family caregiving for community-dwelling older persons in the last year of life. Journal of the American Geriatrics Society, 57(9), pp.1654-1659.

Saxton, M. (Ed.) (2009). Sticks and stones: Disabled people's stories of abuse, defiance and resilience. Oakland, CA: World Institute on Disability.

Solovieva, T.I., Walls, R.T., Hendricks, D.J. & Dowler, D.L. (2009). Cost of workplace accommodations for individuals with disabilities. Disability and Health Journal, 2(4), pp.196-205.

Squillace, M.R., Remsburg, R.E., Harris-Kojetin, L.D., Bercovitz, A., Rosenoff, E. & Han, B. (2009). The National Nursing Assistant Survey: Improving the evidence base for policy initiatives to strengthen the certified nursing assistant workforce. Gerontologist, 49(2), pp.185-197. doi: 10.1093/geront/gnp024

Stone, R. & Newcomer, R. (2009). Advances and issues in personal care. Clinics in Geriatric Medicine, 25(1), pp.35-45.

Wadensten, B. & Ahlström, G. (2009). The struggle for dignity by people with severe functional disabilities. Nursing Ethics, 16(4), pp.453-465.

Wiener, J.M., Squillace, M.R., Anderson, W.L. & Khatutsky, G. (2009). Why do they stay? Job tenure among certified nursing assistants in nursing homes. Gerontologist, 49(2), pp.198-210.