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Home Care

Home Care Research: California’s Consumer-directed Model of Care

The aim of the home care research website is to provide free access to the latest research relevant to home care workers, care recipients, advocates, funders, and public officials. We do not attempt to include all research; rather we focus primarily on: 1) the consumer-directed model of care with particular attention to its structure in California and 2) research relevant to workers and working conditions, recognizing the impact of those conditions on workers’ ability to provide quality care.

Working Group co-chairs have been from the UCLA Labor Occupational Safety & Health Program (UCLA-LOSH), the UC Berkeley Center for Research on Labor & Employment and the UC Santa Barbara Women’s Studies Program. The Working Group was funded by the UC Labor Employment Research Fund.

Research summaries and references are organized into several categories:

  1. Models of care
    1. Historical and Social Context
    2. Assessment of Models
  2. Safety, Health, Satisfaction
  3. Training
  4. Wages, Benefits and Housing

 

  1. Models of care

    1. Historical and Social Context

      Published works:

      1. Boris, E. & Klein, J. (2008). Labor on the home front: Organizing home based care workers, New Labor Forum, 17 (2), 32-41.

        Abstract: This essay looks at recent organizing of home-based workers, first home health aides and then family childcare. It considers the structure of the care work sector, the organizing challenges that come from home locations of the labor, and union strategies to overcome these obstacles, including community partnerships and political mobilization. We consider the welfare state site that organized these employments, making what was private public and thus providing an opening for unionization.

        » Download article PDF

        Full text of article reprinted here with the permission of Routledge.

      2. E Boris, J Klein (2007). Laws of care: The Supreme Court and aides to elderly people. Dissent. http://www.dissentmagazine.org/article/?article=929. Accessed: July 3, 2008.

        Abstract: In Long Island Care at Home v. Evelyn Coke, the Supreme Court unanimously determined that the Department of Labor had the authority to place providers of home care outside the labor law. This piece critiques that decision and gives it a history. It considers how cultural assumptions and government policies since the 1930s significantly shaped the contours of home care, explaining the circumstances under which these workers became misidentified in the labor law.

        » Read article

      3. Boris, E. and Klein, J. (2007). “We were the invisible workforce”: Organizing home care. In The Sex of class: Women transforming American Labor, Cobbler, D.S. (Ed); pp. 177-193. New York: Cornell University Press.

        Abstract: This essay traces the organizing of home care workers over the last thirty-five years in light of the nature of the work and in the context of social movements that together fought state efforts to resolve the crisis of long term care by undervaluing these front-line workers. First, we consider the labor of care. Then we discuss how unionization depended on both making workers and defining employers. Home care unionism originated in social justice movements for domestic workers’ recognition, rights, and dignity; farm worker unionism; public sector militancy bound up with political mobilization around state budgets; and the community organizing of groups like ACORN. These movements not only reached out to workers in casual or service sectors; they sought to invent new structures of representation and, even, distinct notions of unionism that reflected but were not limited to the preponderance of women in this workforce. Crucial to gaining state recognition and funding necessary to improve conditions was a larger coalition with the consumers of care: organized seniors and disability rights activists. In contrast to the traditional contract focus of industrial unions, home care unionism had to advocate for larger social goods. In essence, unions had to become advocates of better care in order to obtain better jobs for their members.

      4. Boris, E. and Klein, J. (2006). Organizing home care: low-waged workers in the welfare state. Politics & Society, 34 (1), 81-108.

        Abstract: Unionization of home care has depended on the state location of the occupation. Government social policies and funding created home care, shaping the structure of the industry and the conditions of work. The welfare nexus, linking old age, disability, health, and welfare policies, however, also transformed care hidden in the home into a public service. Through case studies of California and Oregon, leaders in deinstitutionalizing care of the elderly and disabled, we explore the social struggles that forced the state to recognize its invisible workforce. The home location of personal attendants and other health aides has entailed not only organizing challenges but policy innovation as well. Using the welfare state location of the labor, workers allied with consumers to develop the public authority as a new structure of representation. The history of home care shows that social welfare and health policy have long been entangled with labor policy.

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        This article is reprinted with permission from Sage Publications, www.sagepub.com.
        Please note that the version posted here is accepted but not copyedited.

      5. Boris, E., Chung, G., Delp, L., Matthias, R., and Zabin, C. (2004). Workforce Needs in California’s Homecare System.

        Abstract: This briefing paper summarizes the substantial advantages of California’s In-Home Supportive Services (IHSS) program, and argues for the continuation of the program in the face of potential budget cuts. The authors document the higher costs to the state of nursing home care compared to home care, and outline the positive effects of workers’ higher wages and benefits on worker recruitment/labor supply, worker turnover, the quality of care, and lowered public costs.

        » Briefing Paper PDF

      6. Delp, L. and Quan, K. (2002). Homecare Worker Organizing in California: An Analysis of a Successful Strategy. Labor Studies Journal, 27 (1).

        Abstract: Article examines struggles to unionize the state’s homecare workers and collectively bargain for better wages and working conditions. The authors analyze campaigns in San Francisco, Los Angeles, and Alameda counties, noting the obstacles to success and highlighting future issues of concern. The authors find a strategy of worker organization, policy intervention, and coalition building as the key to success in all cases.

        » Pre-Publication Report PDF

        This article is reprinted with permission from West Virginia University Press.

      Unpublished work:

      1. Boris, E. and Klein, J. Caring for America (forthcoming). Oxford University Press.

        Abstract:
        Objectives. This is a book about the labor of long-term care and the intertwined struggle of workers and clients for dignity, self-determination, security, and personal and social worth. Not only do we give home care a history, but in the process we challenge predominant models and assumptions about the American welfare state that divide public from private sectors, deserving from undeserving recipients of social assistance, to consider how state organization of home care opened avenues for organizing home care.
        Key Findings. The victories of the 1990s did not just happen; they were the culmination of a 35 year struggle that began with the surge in public sector unionism in the mid-1960s, but often involved community based organizing. These movements not only reached out to workers in casual or service sectors; they sought to invent new structures of representation and, even, distinct notions of unionism. Before caregivers were even able to bargain for better conditions, they had to see themselves as workers and fight for such recognition by the public, the state, and the very users of their services. They had to gain visibility and dignity, two key phrases in both self and media representation of homecare providers. They had to seek the right to organize in the first place. But there was a silver lining in the welfare state location. Just as state provision had created this low wage labor force, it also offered a political opening to transform the conditions and status of such labor. Returning to the notion that home care workers labor for the welfare state in the public realm, SEIU particularly promoted a new round of policy innovations, like the Public Authority, and moved to community-based organizing, both suited to promote unionization of a growing “flexible” service workforce.

        » More detailed Research Summary (1/2007) PDF

    2. Assessment of Models

      Published works:

      1. Matthias, RE and Benjamin, AE (2008). Paying Friends, Family, or Strangers To Be Home-Based Personal Assistants: How Satisfied Are Consumers? Journal of Disability Policy Studies, 18(4), 205-218.

        Abstract: This study describes consumers who hire friends, family members, or strangers as paid personal assistants and compares service satisfaction among the three groups. From surveying 511 consumers of self-directed home care services, the authors found that consumers who hire friends as workers are younger and more educated than consumers who hire family members and strangers, and they are more impaired than consumers with strangers as workers. The friend cohort experiences more stability with their personal assistants than does the stranger cohort but not as much stability as the family cohort. On some dimensions of consumer satisfaction, friends as workers are perceived by consumers to be either the same as or better than strangers, but they also are perceived as either the same as or worse than family workers. Using friends as paid workers is an important resource. Researchers and policy makers should further explore this approach because the need for home-based personal assistance continues to increase.

        Abstract is reprinted with permission from Sage Publications. Full text is available at www.sagepub.com.


      2. Kitchener, M., Ng, T., and Harrington, C. (2007). State Medicaid home care policies: Inside the black box. Home Health Care Services Quarterly, 26(3): pp.23-38.

        Abstract: With Medicaid now the largest budget item for many states and the biggest payer of home and community-based services (HCBS), there is increasing interest in state policies related to their three main Medicaid HCBS programs: 1915(c) waivers, state plan personal care, and home health. This article presents an analysis of annual national surveys (2002-2004) of Medicaid HCBS programs that investigate the four main features over which states have discretion: (1) eligibility criteria, (2) services offered (including consumer-direction), (3) discretionary cost controls (financial caps, service limits, and wait lists), and (4) workforce issues including the use of independent providers. The findings advance knowledge of state policy trends within each of the three programs and variations between them.

        » Download article PDF

        This is an electronic version of an article published in 2007 in Home Health Care Services Quarterly, 26(3): pp.23-38. Home Health Care Services Quarterly is available online at: http://www.informaworld.com.

      3. Kitchener, M., Ng T., and Harrington, C. (2007). Medicaid State Plan Personal Care Services: Trends in Programs and Policies. Journal of Aging & Social Policy, 19(3): pp. 9-26.

        Abstract: Policymakers face mounting pressures from consumer demand and the 1999 Olmstead Supreme Court decision to extend formal (paid) programs that deliver personal care to the elderly, chronically ill, and disabled. Despite this, very little is known about the largest program that delivers personal care: the Medicaid State Plan personal care services (PCS) optional benefit. This paper presents the latest available national program (participant and expenditure) trend data (1999-2002) on the Medicaid PCS benefit and findings from a national survey of eligibility and cost control policies. The program trends show that, over the study period, the number of states providing the Medicaid PCS benefit grew by four (from 26 to 30), and national program participation, adjusted for population growth, increased by 27%. However, inflation-adjusted program expenditures per participant declined by 3% between 1999 and 2002. Findings from the policy survey reveal that between 1999 and 2002 there was a marked decline in the range of services provided, and by 2004, almost half the programs operated a cap on the hours of services provided.

        » Download article PDF

        This is an electronic version of an article published in 2007 in Journal of Aging & Social Policy, 19(3): pp. 9-26. Journal of Aging & Social Policy is available online at: http://www.informaworld.com.

      4. Scherzer, T. Wong, A. Newcomer, R. (2007). Financial management services in consumer-directed programs. Home Health Care Services Quarterly, 26(1), pp.29-42.

        Abstract: Shifting from an agency-based model of personal assistance services to consumer direction has important consequences for both recipients and workers. In consumer direction, recipients assume the responsibilities of employing their attendants-for both self-directing their supportive services and being responsible for numerous fiscal responsibilities. Many states have eased these fiscal responsibilities among recipients in publicly financed personal care programs by using Financial Management Services (also known as fiscal intermediaries). This article introduces the major types of Financial Management Services organizations used by Medicaid consumer-directed personal care programs, and examines the extent to which the varied approaches can and do serve the needs of both recipients and workers. Despite the expansion of consumer-directed programs and the accompanying emergence of Financial Management Services, these organizations have not been extensively studied or evaluated. The paper concludes with a discussion of the challenges, opportunities, and policy implications of the current practice; and suggests directions for future research.

        » Download article PDF

        This is an electronic version of an article published in 2007 in Home Health Care Services Quarterly, 26(1), pp.29-42. Home Health Care Services Quarterly is available online at: http://www.informaworld.com.

      5. Harrington, C. and O’Meara, J. (2006). Snapshot: Home Health Care in California: An Overview, 2006. Oakland, CA: California HealthCare Foundation.

      6. Kitchener, M., Ng, T., Miller, N., and Harrington, C. (2006). Institutional and Community-Based Long-Term Care: A Comparative Estimate of Public Costs. Journal of Health & Social Policy, 22(2): pp. 31-50.

        Abstract: As long-term care policy makers struggle with competing challenges including state budget deficits and pressures to expand home and community-based services (HCBS), there is a pressing need for information on the comparative cost of Medicaid HCBS and institutional care. This paper uses the most recent available data (2002) to present three per participant expenditure comparisons between Medicaid HCBS waivers (which require that participants have an institutional level of care need) and institutional care: 1) program expenditure (waivers vs. the comparable level of institutional provision); (2) total Medicaid expenditure (program plus other Medicaid expenditure); and (3) estimated total public expenditure (Medicaid expenditures plus state and federal supplemental income payments). This analysis estimates that when compared with Medicaid institutional care in 2002, HCBS waivers produced a national average public expenditure saving of $43,947 per participant.

        » Download article PDF

        This is an electronic version of an article published in 2007 in Journal of Health & Social Policy, 22(2): pp. 31-50. Journal of Health & Social Policy is available online at: http://www.informaworld.com.

      7. Stoddard, S. (2006). Personal assistance services as a workplace accommodation. Work, 27 (4): 363 – 369.

        Abstract: This paper describes current US trends and practices regarding workplace personal assistance services (PAS) as part of available work accommodation options. Workplace PAS include task-related assistance at work, such as readers, interpreters,
        help with lifting or reaching, re-assignment of non-essential duties to co-workers, and other help related to performing work tasks; and personal care-related assistance such as helping someone use the rest room, eat, or drink while at work.
        The results reported here are based on forty-one telephone interviews conducted in 2004, which included 20 workplace PAS users and 21 US employers familiar with workplace accommodations. Employers and consumers described a range of workplace personal assistance currently used. Barriers to expansion of workplace PAS include negative co-worker or supervisor attitude, cost to employers and workers, waiting time for accommodations, employee attitude and knowledge, and confusing terminology.
        Development of organizational culture that encourages employment of people with disabilities and employer-employee partnerships to arrange for accommodations can contribute to workplace PAS solutions. The survey findings contribute to better understanding of current practices related to workplace PAS.

        » Download article PDF

        Reprinted from Work, Vol. 27, Susan Stoddard, Personal assistance services as a workplace accommodation, Pages 363 – 369, Copyright 2006, with permission from IOS Press.

      8. LaPlante, MP, Kaye. HS, Kang, T, Harrington,C. (2004). Unmet need for personal assistance services: estimating the shortfall in hours of help and adverse consequences. Journals of Gerontology Psychological Sciences, Social Sciences, 59(2):S98-S108.

        Abstract:
        Objectives. Perceived unmet need for personal assistance services (PAS) in activities of daily living (ADLs) and instrumental ADLs and its association with reduced hours of help received and with adverse consequences due to lack of help are examined for adults aged 18 and older using data from the 1994-1997 National Health Interview Survey on Disability.
        Methods. A two-part multivariate regression model of the probability of PAS use and hours of help received was developed to control for need level, living arrangements, and other characteristics that may differ between persons with met and unmet needs and to determine the shortfall in hours associated with unmet need.
        Results. Individuals with unmet need for personal assistance with two or more of the five basic ADLs have a shortfall of 16.6 hours of help per week compared with those whose needs are met. The relative shortfall is twice as great for persons who live alone as for those who live with others. People who live alone and have unmet needs fare worse than people with unmet needs who live with others, and both groups are more likely than those whose needs are met to experience adverse consequences, including discomfort, weight loss, dehydration, falls, burns, and dissatisfaction with the help received.
        Discussion. Overall, just 6.6% of needed hours are unmet among the 3.3 million people needing help in two or more ADLs. We estimate the annual cost of eliminating unmet need among persons with incomes under 300% of the Supplemental Security Income level between 1.2 and 2.7 billion dollars for those living alone and from 2.2 to 7.1 billion dollars for those living with others.

        Abstract reprinted with permission from the Gerontological Society of America. Full text is available via the Gerontological Society of America: http://psychsoc.gerontologyjournals.org/cgi/content/full/59/2/S98.

      9. Waterstone, D., Kang, T., Flores, C., Howes, C., Harrington, C. & Newcomer, R. (2004). California’s In-Home Supportive Services Program: Who is Served? San Francisco, CA: University of California San Francisco.

        Abstract: Governor Schwarzenegger’s preliminary 2004-05 Budget Bill proposed to eliminate a component of California’s In-Home Supportive Services (IHSS) program serving approximately 68,000 individuals. This component, known as the Residual Program, included Protective Supervision and Domestic Care services and services provided by parents and spouses. Under the then existing regulations and the state’s approved state plan for Medicaid, these services did not qualify for shared financing with the Medicaid program and were thus funded solely by state and county sources. The objective of the administration’s proposal was to obtain an estimated net savings from the IHSS program in Fiscal Year 2005 of $366 million.

        » Download report PDF

      10. Benjamin, A. E. (2001). Consumer-Directed Services At Home: A New Model For Persons With Disabilities. Health Affairs, 20(6): 80-95.

        Abstract: The past decade has produced a wave of new state programs that
        have introduced consumer direction into home-based services for persons with
        chronic impairments. Building upon earlier models developed for younger
        adults with physical disabilities, consumer-directed models are now being
        adapted to recipients of all ages with federal, state, and foundation support.
        These models shift responsibility for key service decisions from professionals to
        recipients and challenge the traditional home care agency model. Research
        evidence on the impact of consumer direction is just becoming available to
        policymakers. This paper reviews what we have learned from program and
        research activity so far, and what key issues and challenges remain.

        » Download article PDF

      11. Benjamin AE, Matthias, RE (2001). Age, consumer direction, and outcomes of supportive services at home. Gerontologist, 41(5): 632-42.

        Abstract:
        Purpose: Supportive services at home are essential for older people with severe chronic impairments. Newer “consumer-directed” models of organizing home-based services rely heavily on service recipients rather than home care agencies to arrange and direct care at home. This study examined differences in service experience and outcomes between recipients over and under age 65 who direct their own services in one large Medicaid program.
        Design and Methods: A random sample of 1,095 recipients of In-Home Supportive Services in California was selected and interviewed by telephone. Interviews were conducted in English, Spanish, and three Asian languages; those with severe cognitive impairment were excluded from the study.
        Results: Findings indicate that although younger recipients embrace self-direction more enthusiastically than older ones, age differences are small on a majority of service outcomes. On average, older users embrace this model and manage within it much like younger users. Some differences emerge between the young-old (65–74) and old-old (75+), but these are neither consistent nor determinative.
        Implications: Old age is far from an inevitable barrier to self-direction. As with other age groups, there are opportunities and obstacles to be addressed as this newer approach to home care is disseminated.

        Abstract reprinted with permission from the Gerontological Society of America. Full text is available via the Gerontological Society of America: http://gerontologist.gerontologyjournals.org/cgi/content/full/41/5/632

      12. Benjamin, AE and Matthias, RE (2000). Comparing consumer- and agency-directed models: California’s In-Home Supportive Services Program. Generations, 24: 85-87.

        Abstract: This article describes a study funded by the U.S. Department of Health and Human Services that was designed to examine the experiences of clients and providers under different supportive-service arrangements in the home. These services were offered under the aegis of California’s well-established In-Home Supportive Services program.

        » Download article PDF

        This article is reprinted with permission from the American Society on Aging.

      13. Benjamin, A.E., Matthias, R., Franke, T. (2000). Comparing consumer-directed and agency models of providing supportive services at home. Health Services Research, 35(1, Pt 2): 351–366.

        Abstract:
        Objective. To examine the service experiences and outcomes of low-income Medicaid beneficiaries with disabilities under two different models for organizing home-based personal assistance services: agency-directed and consumer-directed.
        Data Sources. A survey of a random sample of 1,095 clients, age 18 and over, who
        receive services in California’s In-Home Supportive Services (IHSS) program funded
        primarily by Medicaid. Other data were obtained from the California Management
        and Payrolling System (CMIPS).
        Study Design. The sample was stratified by service model (agency-directed or consumer-directed), client age (over or under age 65), and severity. Data were collected on client demographics, condition/functional status, and supportive service experience. Outcome measures were developed in three areas: safety, unmet need, and service satisfaction. Factor analysis was used to reduce multiple outcome measures to nine dimensions. Multiple regression analysis was used to assess the effect of service model on each outcome dimension, taking into account the client-provider relationship, client demographics, and case mix.
        Data Collection. Recipients of IHSS services as of mid-1996 were interviewed by
        telephone. The survey was conducted in late 1996 and early 1997.
        Principal Findings. On various outcomes, recipients in the consumer-directed model report more positive outcomes than those in the agency model, or they report no difference. Statistically significant differences emerge on recipient safety, unmet needs, and service satisfaction. A family member present as a paid provider is also associated with more positive reported outcomes within the consumer-directed model, but model differences persist even when this is taken into account. Although both models have strengths and weaknesses, from a recipient perspective the consumer-directed model is associated with more positive outcomes.
        Conclusions. Although health professionals have expressed concerns about the capacity
        of consumer direction to assure quality, particularly with respect to safety, meeting unmet needs, and technical quality, our findings suggest that the consumer-directed service model is a viable alternative to the agency model. Because public programs are under growing pressure to address the long-term care needs of low-income people of all ages with disabilities, the Medicaid personal assistance benefit needs to be reassessed in light of these findings. Consumer-directed models may offer a less elaborate and possibly less costly option for organizing supportive services at home. Study limitations may limit the generalizability of these findings. This was a natural experiment, in which only some counties offered both service models and counties assigned recipients to a service model. The use of a telephone survey excluded important recipient subsets, notably people with severe cognitive impairments. A more definitive study would include direct observations as well as survey approaches.

        » Download article PDF

        This article is reprinted with permission from Blackwell Publishing. The definitive full-text version is available at www.blackwell-synergy.com.

      14. AE Benjamin, TM Franke, RE Matthias, E Park (1999). Consumer direction and in-home services: Recipient perspectives on family and non-family service. Journal of Rehabilitation Administration, 22(4): 233–247.

        Abstract: As part of a federally-funded study with California In-home Supportive Services program (IHSS), we completed interviews with a sample of 511 recipients with disabilities in IHSS’s consumer-directed model, half of whom used family members as paid program providers. Program clients with family providers (CFPs) and clients with non-family providers (CNFPs) differ on demographics and level of service needs. While their formal service hours are similar, informal resources are quite different. On client outcomes (safety, empowerment, and satisfaction), CFPs have more positive outcomes than CFNPs. The implications for consumer-direction and for public policy are discussed.

        » Download article PDF

        This article is reprinted with permission from Elliott and Fitzpatrick.

      15. Harrington, C. and Grant, L.A. (1990). The Delivery, Regulation, and Politics of Home Care: A California Case Study. The Gerontologist. 30 (4): 451-461.

        Abstract: This study examined seven basic types of formal home care service providers in California, licensed and unlicensed, delivered by agencies and by individual providers. The primary differences were based on sources of payment, duration of care, supervision of personnel, and state regulation, rather than on statutory definitions of services offered and clients served. Many key officials and providers advocate regulatory reform by extending licensure to unlicensed agencies and providers. Competing special interest groups have not developed a consensus about regulation, leading to a political stalemate. Research has not determined differences in quality, access, and costs of licensed and unlicensed home care providers.

        Abstract reprinted with permission from the Gerontological Society of America. Full text is available via the Gerontological Society of America: http://gerontologist.gerontologyjournals.org/cgi/content/abstract/30/4/451.

      Unpublished works:

      1. Jans, L., Kraus, L., Stoddard, S. (unpublished). Personal assistance cooperatives: Workforce models.

        Abstract
        Objectives. The study’s purpose is to provide the US Department of Labor’s Office of Disability Employment Policy (ODEP) with policy recommendations related to personal assistance services (PAS) cooperatives. Cooperatives have the potential to be a model of service delivery in terms of cost, quality of assistance, and worker-consumer cooperation.
        Key Findings. A cooperative is an “organization that is owned and controlled by the people who use its products, supplies and/or services” (International Cooperative Alliance, 2006). Co-ops have both a social and an economic mandate, existing to improve the lives of workers as well as compete cost-effectively in the marketplace. Although cooperatives are a well-established model with a long history of success, worker co-ops to provide PAS are relatively newer phenomena that began in the 1980’s. Models of worker-run cooperatives include: the job training model, the organizing model of the independent caregiver cooperative, and the cooperative conversion model. Worker-run co-ops have faced many challenges, primarily related to funding, but there are existing successful examples in each category of worker coops. The job training model is designed to train low-income people, often recipients of public assistance, to become home health aides and worker-owners in the coops. The organizing model focuses on organizing people who are already working as independent caregivers into a self-governing cooperative. The conversion model is when existing businesses or non-profits transform their organizational structures into cooperatives. One other potentially useful finding is the existence of worker-consumer run coops where both workers and PAS consumers are members of the coop, thus ensuring voices from both sides.

        » More detailed Research Summary (2/2007) PDF

      2. Kitchener, M. and Harrington, C. (in process). Medicaid Home and Community-Based Personal Care: Trends in Program and Policy.

        Abstract: The primary goal of this 5-year research project is to identify, track and analyze programs and policies concerning formal (paid) PAS delivered in the home and community (as opposed to institutional settings). The project is directed by Martin Kitchener and Charlene Harrington at the University of California, San Francisco, and it comprises four streams of research. The first study conducts longitudinal analyses of the three main Medicaid home and community based services (HCBS) programs, the second tracks and analyzes national PAS policy issues, the third conducts a series of statistical analyses to profile PAS participants in Michigan, and the fourth identifies and evaluates nursing facility transitional models.

        » More detailed Research Summary (2/2007) PDF

      3. Stoddard, S., Kraus, L., Jans, L., Hendrix, D. J., Misra, S., and Orslene, L. (unpublished). Providing homecare services at work: PAS workforce issues in the provision of workplace PAS

        Abstract: Formative research on the use of Personal Assistance Services in the Workplace. Identifies barriers and solutions to expanding the provision of PAS, including personal care, at work.

        » More detailed Research Summary (1/7/07) PDF

  2. Safety, Health, Satisfaction

    Published works:

    1. Delp L, Wallace SP, Geiger-Brown J, Muntaner C. 2010. “Job Stress and Job Satisfaction: Home Care Workers in a Consumer-Directed Model of Care.” Health Services Research 45(4):922-940.
    2. Scherzer, T. and N. Wolfe (2008). Barriers to Workers’ Compensation and Medical Care for Injured Personal Assistance Service Workers. Home Health Care Services Quarterly, 27(1): 37-58.

      Abstract:
      Objectives. We documented barriers to workers’ compensation
      and injury-related medical care faced by homecare or Personal
      Assistance Services (PAS) workers. We explored differences between
      independent providers and agency-employed workers.

      Methods. We conducted in-depth, semi-structured interviews with a
      diverse sample of 38 injured workers. Participants were primarily female
      and racial-ethnic minorities.

      Results. Most participants (82%) were independent providers. Common
      barriers to reporting injury included commitments to clients and financial
      pressure. Unlike agency employees, many independent providers
      knew little about workers’ compensation eligibility and injury reporting
      procedures, and frequently were given “the runaround” by the social service
      bureaucracy when they attempted to report injury and access injuryrelated
      medical care. Among independent providers, delays in filing a
      claim and receiving timely medical attention were common.

      Conclusions. The lack of a traditional employment infrastructure has
      important implications for vulnerable workers’ health and the sustainability
      of consumer-directed PAS programs. We provide recommendations for improving workers’ access to workers’ compensation and injury-related
      medical care.

      » Download article PDF

    3. Geiger-Brown, J., Muntaner, C., McPhaul, K., Lipscomb, J., Trinkoff, A. (2007). Abuse and violence during home care work as predictor of worker depression. Home Health Care Services Quarterly 26(1):59-77.

      Abstract:
      Objectives. Home care workers provide care without the normal protections afforded in the hospital. This study describes the prevalence of abuse and violence experienced by home care workers and its relationship to workers’ depression.
      Methods. A two-wave telephone survey (N = 1,643) was conducted to assess the prevalence of abuse and prevalence/incidence of workers’ depression.
      Results. Abuse was significant for elevated odds for depression, with a dose effect. Violence was highly associated with depression.
      Conclusions. Preventive and early intervention measures should be taken to reduce mental health consequences of abuse and violence among home care workers.

      » Download article PDF

      This is an electronic version of an article published in 2007 in Home Health Care Services Quarterly 26(1):59-77. Home Healthcare Services Quarterly is available online at: http://www.informaworld.com.

    4. Scherzer, T., & Newcomer, R. (2007). Barriers to documenting occupational injuries among personal assistance services workers. American Journal of Industrial Medicine, 50(7), 536-544.

      Abstract:
      Background. Personal Assistance Services (PAS) workers provide essential support to disabled and elderly individuals living at home rather than in institutions. Occupational injury risks are known, but limitations in occupational injury surveillance prevent assessing injury prevalence. Changing employment arrangements adopted by publicly funded programs may complicate the classification of PAS workers.
      Methods. We surveyed state workers’ compensation agencies and Financial Management Services organizations used by state Medicaid programs.
      Results. Changing employment arrangements pose further barriers to classifying and documenting injury, and accessing workers’ compensation coverage. Workers’ Compensation coverage varies according to employment arrangements of the PAS workers. Financial Management Services organizations vary in their roles for reporting injury. Most frequent activities were providing written information about injury reporting, and reporting injuries to appropriate agencies or insurance companies.
      Conclusions: Current limitations undercount the prevalence and consequences of PAS-related occupational injuries among agency workers and largely ignore independent providers. Policy and research recommendations are presented.

      Abstract reprinted with permission from John Wiley & Sons, Inc. Full text is available in the American Journal of Industrial Medicine: http://www3.interscience.wiley.com/journal/114278471/issue.

    5. Scherzer, T., Chapman, S., & Newcomer, R. (2006). Integrating occupational health and safety into the United States Personal Assistance Services workforce research agenda. In S. R. Kunkel & V. Wellin (Eds.), Consumer voice and choice in long-term care (pp. 89-100). New York: Springer Publishing Company.
    6. Solari, C. (2006). Professionals and Saints: How Russian Immigrants Imagine and Practice Home Care Work. Gender & Society, 20 (3): 301-331, Sociologists for Women in Society.

      Abstract: Russian-speaking homecare workers deploy two divergent discursive practices—professionalism and sainthood—in understanding carework. These two meaning-making systems have consequences for how this work is performed and experienced by workers. Surprisingly, the division is not based on gender. Instead, immigration laws filter Jewish and Orthodox Christian immigrants from the former Soviet Union into two separate sets of resettlement institutions. The characteristics of these separate institutional settings shape the discursive tools available to these two groups, leading Jewish refugees to deploy professionalism while Orthodox Christian immigrants deploy sainthood. These discursive practices affect gendered identities, allowing workers in some cases to renegotiate hegemonic notions of masculinity and create new models of “feminine” caregiving.

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      This article is re-printed with permission from Sage Publications. The final, definitive version is available at http://gas.sagepub.com/cgi/content/abstract/20/3/301 . Gender & Society, Vol. 20, No. 3, 301-331 (2006). DOI: 10.1177/0891243205285633. © 2006 Sociologists for Women in Society

    7. Matthias, R. and Benjamin, A.E. (2005). “Intent to stay” among paid home care workers in California. Home Health Care Services Quarterly, 24(3): 39-57.

      Abstract: The continuing shortage of entry-level healthcare workers highlights the need to understand worker retention and turnover. This study focuses on intent to stay among 618 paid home care workers in California, half from agencies, and half employed under a consumer-directed model that includes both relatives and non-relatives of the client. Most workers (63.3%) report that they will very likely be working as a caregiver in 12 months, but more family than non-family caregivers say so. Being related to the client, and having fewer clients, more training, more job satisfaction, and hopes for a raise, all predict intent to stay. However, when we analyze family caregivers separately, there are no significant predictors of intent to stay.

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      This is an electronic version of an article published in 2005 in Home Health Care Services Quarterly, 24(3): 39-57. Home Health Care Services Quarterly is available online at: http://www.informaworld.com.

    8. Stacey, C. (2005). Finding dignity in dirty work: the constraints and rewards of low-wage home care labour. Sociology of Health and Illness (27)6: 831–854

      Abstract: The ageing of the population in the US and elsewhere raises important questions about who will provide long-term care for elderly and disabled people. Current projections indicate that home care workers – most of whom are unskilled, untrained and underpaid – will increasingly absorb responsibility for care. While research to date confirms the demanding aspects of the work and the need for improved working conditions, little is known about how home care workers themselves experience and negotiate their labour on a daily basis. This paper attempts to address this gap by examining how home care workers assign meaning to their ‘dirty work’. Qualitative interviews suggest that home care workers have a conflicted, often contradictory, relationship to their labour. Workers identify constraints that compromise their ability to do a good job or to experience their work as meaningful, but they also report several rewards that come from caring for dependent adults. I suggest workers draw dignity from these rewards, especially workers who enter home care after fleeing an alienating service job, within or outside the healthcare industry.

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      This article is reprinted with permission from Blackwell Publishing. The definitive version is available at www.blackwell-synergy.com.

    9. Baron, S. and Habes, D. with Stock, L. (2004). NIOSH Health hazard evaluation report Alameda County Public Authority for In-Home Support Services Alameda, California. http://www.cdc.gov/niosh/hhe/reports/pdfs/2001-0139-2930.pdf. Accessed July 3, 2008.

      Abstract:
      On January 19, 2001, the National Institute for Occupational Safety and Health (NIOSH) received a request from the Alameda County Public Authority (PA) for In-Home Supportive Services and the Service Employees International Union (SEIU) Local 616 to evaluate working conditions and make recommendations regarding the prevention of musculoskeletal disorders and other safety and health problems among the approximately 10,000 publicly funded homecare workers (HCWs) in Alameda County, California who are represented by SEIU. Alameda County, like all of the California In-Home Supportive Services (IHSS) HCW, uses a consumer directed model in which the recipient of the home care services recruits, hires, trains, directs, and fires their own workers. Because of the unique nature of a consumer directed service model, the PA and SEIU asked NIOSH to evaluate the health and safety issues of HCWs in Alameda County.

      The evaluation utilized multilingual HCW focus groups, key informant interviews, analysis of injury data and an in-home site visit. Findings indicated that housekeeping tasks were as physically demanding to workers as client lifting and transfer tasks, that workers largely did not have adequate tools and equipment to complete their required tasks, and that most consumers’ homes were not equipped and/or configured to allow for efficient delivery of needed services. The evaluation also found that most HCWs had little or no formal training on how to safely perform home care tasks prior to beginning work and few opportunities existed for in-service training during employment.

      Interviews with individuals and groups involved with homecare in the Alameda County area, consumers, consumer groups, and IHSS social workers indicated that there were additional problems with the consumer-client relationship, such as the lack of a clear understanding of whose responsibility it was to provide for the safety and health of the HCW, and lack of a clear definition of what a HCW was required to do for their consumer. In general, it was found that there was poor communication between consumers and HCWs, and inadequate means for resolving disputes that arose. Recommendations were made for the establishment of a comprehensive safety and health program that could be overseen by a union and management joint committee. NIOSH investigators conclude that the current program for delivering consumer-directed home care services in Alameda County could lead to health and safety problems for homecare workers. Lack of training, inadequate resources, and poor communication between consumers and caregivers contributes to health risks. Recommendations to improve safety and health for home care workers are contained in this report.

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    10. Benjamin, A. E. and Matthias, R. E. (2004). Work-Life Differences and Outcomes for Agency and Consumer-Directed Home-Care Workers. The Gerontologist, 44(4): 479-488.

      Abstract:
      Purpose. Research on home-care outcomes has highlighted the promise of consumer-directed models that rely on recipients rather than agencies to arrange and direct services. However, there has been little research on workers employed directly by recipients. This study examined differences in work-life and worker outcomes between workers in consumer-directed versus agency care as well as between family and nonfamily workers.
      Design and Methods. A random sample of 618 workers in the In-Home Supportive Services program in California was selected and interviewed by telephone between September 1996 and March 1997. Interviews were conducted in English, Spanish, and three Asian languages, with a focus on worker stress and satisfaction.
      Results. Findings indicate a mixed portrait of worker experience and outcomes. Most model differences disappear when other variables are controlled, but some worker-stress differences persist between models and types of worker.
      Implications. On most dimensions of stress and satisfaction, consumer-directed workers report outcomes equal to or more positive than agency workers. Efforts to improve the work life of home-care workers should acknowledge the strengths of consumer-directed approaches and target all workers across models.

      Abstract reprinted with permission from the Gerontological Society of America. Full text is available via the Gerontological Society of America: http://gerontologist.gerontologyjournals.org/cgi/content/full/44/4/479.

    11. Matthias, R.E. and Benjamin, A.E. (2003). Abuse and Neglect of Clients in Agency-Based and Consumer-Directed Home Care. Health and Social Work, 28:174-184.

      Abstract: Because a growing number of Americans receive long-term care at home, social workers face new challenges in referring clients to either agency-based or consumer-directed care models. Traditional agency-based home care often is considered safer for disabled clients because workers are professionally trained and monitored; newer, client-directed home care models offer more autonomy and flexibility. This study examined differences in worker abuse and neglect of clients across agency and consumer-directed models. Analyses showed that family ties, race or ethnicity, social supports, language compatibility, and provider turnover were more relevant than model of care to understanding worker abuse and neglect of clients. These findings suggest that clients in consumer-directed models are at no higher risk than agency clients. Implications are considered for social work practitioners.

      Abstract is reprinted here with permission from NASW press: http://www.naswpress.org/publications/journals/index.html

    12. Arteaga, S., Geiger-Brown, J., Muntaner, C., Trinkoff, A., Lipscomb, J., Delp, L. (2002). Home care work organization and health: Do Hispanic women have different concerns? Hispanic Health Care International, 1: 135-41.

      Abstract: Home care is one of the most rapidly expanding segments of the health care industry, with both demographic and fiscal pressures ensuring that this type of care will continue into the future. Much of the care is provided by low-wage workers, mostly women, without the typical protections and benefits that workers in traditional health care settings receive. The purpose of this qualitative study was to describe the experience of a sample of home care workers. Four focus groups were held, three with ethnically mixed groups, and one with exclusively Hispanic workers. Four major themes emerged: physical demands, emotional drain, compensation issues, and benefits of the work. Although some Hispanic women might be at greater risk of overexploitation because of language barriers and immigration status, there were no major differences noted between the health concerns of Hispanic and non-Hispanic home care workers. The themes identified seemed to cut across cultures and ethnicity for workers in home care.

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      Home care work organization and health: Do Hispanic women have different concerns? Arteaga, S., Geiger-Brown, J., Muntaner, C., Trinkoff, A., Lipscomb, J., Delp, L. © 2002 Springer Publishing Company. Reproduced with the permission of Springer Publishing Company, LLC, New York, NY 10036.

    13. Kietzman, K., Benjamin, A.E., and Matthias, R.E. (forthcoming). Of Family, Friends, and Strangers: Caregiving Satisfaction across Three Types of Paid Caregivers. Accepted for publication by Home Health Care Services Quarterly.

      Abstract: This study examines the experiences of 609 family, friend,
      and unrelated caregivers hired directly by clients under a consumerdirected
      model of home care. Using telephone survey data of clients and
      workers in California’s In-Home Supportive Services program, this
      research compares outcomes and identifies predictors of caregiving work
      satisfaction across these three groups. In the total sample, feeling well prepared
      for the work predicted higher levels of satisfaction, while being
      Latino/Hispanic (as compared to being White or Black) predicted lower
      levels of satisfaction. Predictors varied depending on the caregiver’s relationship
      with the client. In particular, friend caregivers who felt prepared
      were more satisfied than either strangers or family members. Understanding
      more about caregiver-client relationships and satisfaction is important to
      future workforce recruitment and retention efforts.

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    Unpublished works:

    1. Benjamin, A.E., Matthias, R.E., Kietzman, K., and Furman, W. (forthcoming). Retention of Paid Related Caregivers: Who Stays and Who Leaves Home Care Careers? Accepted for publication by The Gerontologist.

  3. Training

    Published works:

    1. North, D. (2004). Lattices to a better life. In A ‘Just’ Development: Lessons from the Figueroa Corridor Coalition for Economic Justice. Community Scholars Program, UCLA Department of Urban Planning.

      Abstract: If residents of LA’s Figueroa Corridor are to maintain their homes and livelihoods in the face of high-powered real estate development, viable careers for workers who lack income and formal training must be identified. This chapter explores the notion that unionization and worker training and development can together provide such workers with access to good jobs. The chapter presents home care work as an example of an attractive option, since SEIU Local 434B–the Home Care Workers’ Union–is located conveniently nearby. The union offers collective bargaining rights, worker training and certification, child care and other support services, and advancement opportunities.

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      This chapter is reprinted with permission from the author.

    2. Matthias, R.E., Chapman, S., Rickles, J., Morrison, E., Ong, P., Benjamin, A.E., and Newcomer, R. (2003). Caregiver Training Initiative: Final Process and Outcomes Evaluation Report. Submitted to California Employment Development Department, November 1, 2003.

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    3. Leavitt, J. (2001). Care in Organizing: Building Coalitions in Los Angeles. Participatory Democracy and Coalition Building. Community Scholars Program, UCLA Department of Urban Planning.

      Abstract: Surveys and interviews in Los Angeles County indicate that homecare workers pay as much as 60% of their income to afford a two bedroom apartment at fair market rent. About 2/3 of homecare workers are renters, many of whom reported living in substandard housing conditions.

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      This report is reprinted with permission by the author.

  4. Wages, Benefits and Housing

    Published works:

    1. Rhee, N. and Zabin, C. (May 2009). The Social Benefits of Unionization in the Long-Term Care Sector in John Logan (ed.) Academics on Employee Free Choice: Multidisciplinary Approaches to Labor Law Reform PDF

      Abstract: Since the late 1990s, unions have organized hundreds of thousands of direct-care workers, mostly in publicly funded homecare. This paper documents the positive effect of unionization on wages and benefits, and the unions’ leadership in policy innovation to upgrade and stabilize the homecare workforce. The report argues that the voice of an organized workforce is key to improving direct-support jobs in order to mitigate the long-term care workforce crisis, both through collective bargaining and through partnerships for state and national policy advocacy.

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    2. Howes, C. (2006). Building a high quality home care workforce: Wages, benefits, and flexibility matter. Executive Summary. Better Jobs, Better Care Study.

      Abstract: If you are elderly, blind or disabled in California, are unable to care for yourself at home without assistance and your income falls below $2,000 a month, you are entitled to home care assistance – that is if you can find it. Turnover in direct care jobs is extremely high in the United States, mostly due to the difficulty and low pay of the work. Nationally, half of homecare workers quit their jobs every year. That means that the average recipient – or their family member – has to find and train a new worker every six months. This often forces consumers to go without a caregiver for a period of time, leading them to costly hospital emergency rooms or nursing homes. Unfortunately, few people, whether family or professional, can provide consistent and competent care to people who need assistance unless they are paid a decent wage and benefits. This study demonstrates that paying decent wages and benefits to direct care workers greatly increases the likelihood that workers will enter and stay in the job.

      » Download Executive Summary PDF

    3. Howes, C. (2005). Living Wages and Retention of Homecare Workers in San Francisco. Industrial Relations 44 (1): 139–163.

      Abstract: This study records the impact on workforce retention of the nearly doubling of wages for homecare workers in San Francisco County over a 52-month period. Using descriptive statistics and logistic regression analysis I find that the annual retention rate of new providers rose from 39 percent to 74 percent following significant wage and benefit increases and that a $1 increase in the wage rate from $8 an hour – the national average wage for homecare – would increase retention by 17 percentage points. I also show that adding health insurance increases the retention rate by 21 percentage points.

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      This article is reprinted with permission from Blackwell publishing. The definitive version is available at www.blackwell-synergy.com.

    4. Howes, C. (2004). Upgrading California’s home care workforce: The impact of political action and unionization. In The state of California labor. University of California Press.

      Abstract: Candace Howes examines the recent history of one of California’s rapidly growing occupations: home care. As the author’s analysis demonstrates, home care has been extensively transformed in recent years through large-scale unionization and coalition-based political action, which have led to major improvements in wages and benefits. Apart from providing many home care workers with better pay, the upgrading of this occupation has also improved the quality of care that clients receive, since higher wages make for lower turnover. The improved working and living conditions that result benefit caregivers and those they serve alike. The author’s empirical analysis has obvious ramifications for low-wage employment generally, particularly in the burgeoning health care and personal services sector.

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    5. Leavitt, J., & Lingafelter, T. (2005). Low Wage Workers and High Housing Costs. Labor Studies Journal, 30(2), 41-60.

      Abstract: Housing policy becomes a labor issue when housing costs consume large portions of hard-won wage increases. The extent and the depth of today’s housing crisis make this issue more pressing than at any time since the 1930s when labor’s participation was critical to the passage of the U.S. Housing Act. Without the benefit of housing-subsidy programs, low-income people often pay more than half their incomes on housing. In this article, we focus on the effect of the housing crisis on members in Service Employees International Union (SEIU) Local 434B who represent over 100,000 homecare workers in Los Angeles and San Bernardino counties. Living in overcrowded and substandard housing, workers face abusive landlords, suffer feelings of powerless- ness, and endure compromised self-worth and dignity. Homecare workers use coping strategies in order to live with the problems created by the high costs of housing and poor conditions. Local unions can intervene in ways that tie housing to traditional campaigns and break new ground in the housing arena. Without labor’s involvement, the ad hoc housing policy in the United States will continue to burden workers in low-wage occupations.

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      This article is reprinted with permission from Sage Publications, www.sagepub.com.

    6. Howes, C. and Greenwich, H. (w/ Grundy, L. and Reif, L.) (2002). Struggling to Provide: A Portrait of Alameda County Homecare Workers.

      Abstract: This report provides a snapshot of the economic conditions facing approximately 8,000 homecare workers in Alameda County, California. Among other findings, the report documents that over one third of workers and their families lived below the Federal poverty line and that more than two-thirds of homecare workers are the primary breadwinner for their families. Development of this report was a collaborative participatory research effort sponsored by the UC Berkeley Center for Labor Research and Education with the East Bay Alliance for a Sustainable Economy, SEIU Local 616, and Drs. Howes and Reif.

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    Unpublished work:

    1. Howes, C. (forthcoming). Who will care for the women? In Hartmann, H. and Lee, S. (Eds.). Women and Retirement Security. New York: Russell Sage Foundation.

      Abstract: Over 20 million people today, including children, working-age disabled, and elderly persons, require some sort of assistance to live safely. Largely because women live longer than men, well into the ages when the probability of needing care increases, 70 percent of elderly people who need long-term care are women. Furthermore, most long-term care is provided by women, mainly as unpaid care in the home, or as low-paid care in institutions and community settings (Stone & Weiner 2001). The United States faces a severe long-term care crisis because of the nation’s inability to plan for the changing demographic balance. The crisis in long term care has two problems: a) that we are putting too many resources into institutional care relative to home- and community-based care and relying too heavily on unpaid care in the home to meet the real needs of the aging population, and b) that we do not, and increasingly will not, have enough people to provide for the volume of care that will be needed in the coming decades. This chapter begins with a description of the long-term care system in the United States – what long-term care is, who needs it, in what settings it is provided, and who pays for it. Using the author’s analysis of a national survey of caregivers conducted by the National Alliance for Caregiving and the AARP in 2003 along with other sources, this section shows that a substantial portion of the people who need long-term care rely on unpaid care from family and friends, mainly women. When people do receive paid care, almost half – mostly women — receive it in institutional settings. The discussion demonstrates that women are far more likely to end up in institutions than men, even controlling for age and level of impairment. It then argues that, for a number of reasons, states and the federal government will have to respond to the preferences of consumers for home- and community-based care.

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      This unpublished chapter is reprinted with permission from the author.

All sources compiled and accessed: December 15, 2008