Wages or welfare? Compensating caregiving in two conservative social welfare states

While nearly all developed nations have some form of attendance allowance for the elderly and disabled, the United Kingdom and several of the American states have provisions to pay caregivers directly if they are family members. This paper compares and contrasts provisions in the U.K. Invalid Care Allowance with provisions of a program in one American state-Michigan. Such payments potentially benefit disabled people, caregivers, and cost-conscious states. However, two particular goals shape the programs' impacts on caregiver functioning and adequacy. One is the extent to which programs operate as welfare provisions and benefits directed at the social or household economy. The other is the extent to which they function as a substitute for wage labor in the market economy. Each of these can be assessed in relation to the real, personal choices and economic gains it provides caregivers. Presumably, both are important in sustaining adequate and satisfying long-term care. Only by truly expanding choice as well as capacity can governments expect to effectively sustain an optimal mix of care provision in the community.     

Inclusion of Caregiver Supports and Services in Home- and Community-Based Service Programs: Recent Reports from State Units on Aging

Caregivers have an important role in assisting frail and/or disabled individuals to maintain their independence in the community. Support to assist caregivers in this often stressful and demanding role is critical to sustaining the caregivers' health and ability to provide care. This paper reviews federal policy changes since 2000 that have expanded and enhanced services for informal caregivers. Next, data collected from State Units on Aging and other state agencies are presented to describe the extent to which caregiver services are included in home- and community-based programs under three funding streams (Medicaid waivers, Centers for Medicare and Medicaid Services–funded programs, and state-funded programs). Program characteristics, such as eligibility and consumer-directed options, are included. Finally, the accomplishments and initiatives reported by state respondents related to supporting informal caregivers are also explained. Results indicate that services for informal caregivers are receiving greater attention and are frequently offered under home- and community-based service programs by the states that participated in this study.     

Inclusion of caregiver supports and services in home- and community-based service programs: recent reports from state units on aging

Caregivers have an important role in assisting frail and/or disabled individuals to maintain their independence in the community. Support to assist caregivers in this often stressful and demanding role is critical to sustaining the caregivers' health and ability to provide care. This paper reviews federal policy changes since 2000 that have expanded and enhanced services for informal caregivers. Next, data collected from State Units on Aging and other state agencies are presented to describe the extent to which caregiver services are included in home- and community-based programs under three funding streams (Medicaid waivers, Centers for Medicare and Medicaid Services-funded programs, and state-funded programs). Program characteristics, such as eligibility and consumer-directed options, are included. Finally, the accomplishments and initiatives reported by state respondents related to supporting informal caregivers are also explained. Results indicate that services for informal caregivers are receiving greater attention and are frequently offered under home- and community-based service programs by the states that participated in this study.     

Spousal motivations of care for demented older adults: A cross-cultural comparison of Greek and American female caregivers

Purpose of the study: This study examines motivations for caregiving in American and Greek female spousal caregivers (FSCGs), and identifies cross-culturally equivalent and culturally specific types of motivations for care of a demented spouse. Design and Methods: Thirty American women and 44 Greek women who were caring for their demented husbands were surveyed about their motivations for caregiving. Results: Greek and American FSCGs were dissimilar in the extent to which they reported being motivated by a desire to maintain family harmony. Greek and American caregivers also differed in how often they cited financial reasons, wanting to please their spouse, being against institutionalization, and giving the best care as motivations for care. Implications: Culturally related differences in caregiving motivations may translate into differences in the extent to which motivations result in adaptive or maladaptive outcome for the caregiver and the care recipient.     

Toward an equitable, universal caregiver policy: the potential of financial supports for family caregivers

This article describes the fragmented array of financial supports for family caregivers currently provided by the federal government, the states, and private employers-provisions that range from direct payments to tax allowances, dependent-care tax credits, and unpaid leave. It highlights the uneven pattern of supports available to family caregivers of the elderly, the younger physically disabled, and children and adults with mental retardation and developmental disabilities that results from the welfare bias still shaping many current provisions. The article then critiques current policy and examines the potential for more explicit family caregiver financial support policy through pending initiatives of the Clinton Administration.     

Aging, disability, and disabled older people in India

India is witnessing a demographic revolution, leading to a considerable increase in the proportion of older people in the population. Similarly, life expectancy of both the mentally and physically disabled has improved considerably. About 5% of Indian older people have problems with physical mobility. Aging has become a gender issue in India not only because more women are surviving into old age; they are also vulnerable and disadvantaged in many ways. In most cases they are the only caregivers available for the old and disabled. Older Indians are considered a high-risk group for multiple morbidity. It is estimated that nearly four million Indians suffer from mental problems. India has around 12 million people designated as "handicapped." However, little information is available about disabled people who grow older. The National Policy on Older Persons, which has been recently formulated, aims at providing an improved quality of life for millions of older Indians. However, the concerns of older disabled and of the disabled who grow old are still treated separately in both policy and practice.     

Paid family caregiving: a review of progress and policies

Policymakers in the United States have begun to examine solutions that encourage increased sharing of caregiving responsibilities between government and family. Initiatives in Sweden and the United Kingdom are now in place. Support includes a care leave policy implemented at the federal level, paying salaries to family members when caregiving is a regular job, providing job training to salaried caregivers when their personal caregiving experience ends, community-based programs for caregivers, and allowances to be used for providing care to an elderly person. In the United States, 13 states pay caregivers as Medicaid providers. Policymakers have considered tax incentives and, in 1975, U.S. Senate Bill 1161 was introduced but failed as an attempt to provide cash subsidies to families caring for the elderly. A proposal has been made to expand the Temporary Disability Model to include care of family members of all ages by providing adequate wage replacement to assist caregivers. At present, 34 states provide some type of economic support for caregivers. Research is needed to determine what types of programs are most acceptable and beneficial to caregivers as well as cost effective for government.     

Government Policies and Disabled People in American Indian Communities

Although services and resources for disabled people in the United States have improved greatly as a result of legislation and advocacy efforts, many of the disabled in American Indian communities have yet to benefit from these advances. Inaccessibility to services is often complicated by problems and debates over which agency, state or federal, is responsible or has jurisdiction to provide the services. Meanwhile, Indian communities struggle to accomplish what they can with limited resources.     

Aging,Disability, and Disabled Older People in India

Summary

India is witnessing a demographic revolution, leading to a considerable increase in the proportion of older people in the population. Similarly, life expectancy of both the mentally and physically disabled has improved considerably. About 5% of Indian older people have problems with physical mobility. Aging has become a gender issue in India not only because more women are surviving into old age; they are also vulnerable and disadvantaged in many ways. In most cases they are the only caregivers available for the old and disabled. Older Indians are considered a high-risk group for multiple morbidity. It is estimated that nearly four million Indians suffer from mental problems. India has around 12 million people designated as “handicapped.” However, little information is available about disabled people who grow older. The National Policy on Older Persons, which has been recently formulated, aims at providing an improved quality of life for millions of older Indians. However, the concerns of older disabled and of the disabled who grow old are still treated separately in both policy and practice.     

Medicaid home- and community-based services: impact of the affordable care act

The Affordable care Act (ACA) legislation of 2010 has three important voluntary provisions for the expansion of home- and community-based services (HCBS) under Medicaid: A state can choose to (1) offer a community first choice option to provide attendant care services and supports; (2) amend its state plan to provide an optional HCBS benefit; and (3) rebalance its spending on long term services and supports to increase the proportion that is community-based. The first and third provisions offer states enhanced federal matching rates as an incentive. Although the new provisions are valuable, the law does not set minimum standards for access to HCBS, and the new financial incentives are limited especially for the many states facing serious budget problems. Wide variations in access to HCBS can be expected to continue, while HCBS will continue to compete for funding with mandated institutional services.     

Connective complexity: African American adolescents and the relational context of kinship foster care

Attempts to address racial disproportionality in child welfare must include a focus on the benefits and challenges facing children in kinship care. African American children not only are overrepresented in the child welfare system, but also are placed disproportionately in kinship foster care. Using a sample of 18 African American adolescents ages 11 to 14, this article explores how the relational context of care experienced by adolescents in kinship foster care differs from that of adolescents in nonkinship foster family placements. Findings are presented regarding the stability of relationships as well as complex role dilemmas experienced by kinship youth as they relate to caregivers and birthparents in the child welfare context. Implications are given for practice with kinship families.     

Using tribal/State Title IV-E agreements to help American Indian tribes access foster care and adoption funding

Funding under Title IV-E has historically not been available to American Indian communities, therefore, tribes have had to develop agreements with states to access these funds for child care services. This study analyzes Title IV-E intergovernmental provisions to help tribes and states strengthen Title IV-E agreements. A nationwide content analysis of existing Title IV-E documents, phone interviews, and focus groups revealed that Title IV-E tribal/state agreements vary widely, with most tribes not receiving full access to state services. These agreements focus on foster care maintenance payments and services. This article includes recommendations to help facilitate tribal access to Title IV-E funding for foster care and adoption services.     

Caught Between Love and Money: The Experiences of Paid Family Caregivers

This paper considers the experiences of family home care providers, paid an hourly wage by California’s In Home Supportive Services program to care for disabled or elderly relatives. These caregivers are unique in that they provide care in what Arlie Hochschild calls the “third sector” of social life, where norms and responsibilities tied to work and family intersect. Drawing on in-depth interviews and ethnographic observations of family home care providers, we find that providers perceive their paid caregiving as deviant behavior that violates social norms surrounding family care, i.e. that people should not be paid for the care of kin. Family caregivers manage the norm violation associated with their carework by offering “accounts” that 1) emphasize the tasks and skill associated with caregiving and 2) by framing their carework as a public good that benefits the larger community. These accounts allow family providers to distance themselves from the norm violation of receiving a wage for care and to reconstruct their actions in a positive light.     

Communications Technology—empowerment or Disempowerment?

Developments in communication technology can reduce dependence on others and facilitate independent living for disabled people. Recently developed telephone-based services allow users to call up help quickly, as and when they need it. But the dominant model of provision emphasises vulnerability, assumes a need for protection and imposes rules about appropriate use. The article identifies the influence of manufacturers and providers of communication alarms in perpetuating paternalistic approaches to services for older disabled people and limiting the potential for user determination of need. Emergent models which aim to facilitate user-control face low expectations among users, the entrenched attitudes of providers and the dominance of the market in influencing practice. The mixed economy of social care is likely to increase the gap between providers' interests and users' needs.     

Fighting the odds: strategies of female caregivers of disabled children in Zimbabwe

Caregivers of disabled children face numerous challenges in meeting their child’s needs. Research on Zimbabwean caregivers of disabled children is limited. Yet the difficult socio-economic, political and institutional context is expected to complicate the caregiving task. This article examines the resources and caring strategies of female caregivers in Mutare, Zimbabwe, using a well-being framework. Through a mixed-methods approach, the data reveals that external support is extremely limited, particularly due to stigma and a weak state. Caregivers are mostly self-reliant and their strategies focus on enabling themselves to take care of their child.     

Grandmothers Who Are Caregivers: An Overlooked Population

This paper examines the concerns of 22 African American grandmothers who are primary caregivers of their grandchildren. In-depth interviews were conducted and revealed that these grandmothers incurred economic hardships, marital difficulties, lifestyle changes, and stressors associated with multiple roles. Overall, however, these grandmothers reported that they enjoyed taking care of their grandchildren because it put meaning back into their lives. Implications for further research and the development of social service programs for African-American grandmothers who are caregivers and have multiple roles are discussed.     

Services to Families with Dependent Elders

This article analyzes the role of states in providing service and financial incentives for family caregivers to impaired older people. Results from a recent Massachusetts study of family relations of the elderly are reported, focusing on the role of relatives in providing care. Next, critlcal needs of family caregivers are discussed, and major service initiatives to respond to these needs are reviewed. The Massachusetts home care system is used as an example of how services that support family care can be delivered in a comprehensive fashion. Two financial incentive programs (tax incentives and direct payment of caregivers) are then presented. The article concludes with a call for experimental demonstration projects to expand knowledge in this area.     

A Disabling Education: the case of disabled learners in Malaysia

Currently there is a move by the government towards improving the state of education for disabled learners in Malaysia. It is believed that current policy and practice do not meet the needs and requirements of these learners, partly because of the different definitions of disability adopted by various government agencies that are empowered to assist them. Employing a social constructivist framework, these definitions are examined specifically in the way they have been developed into different practices. It is argued that some of the common practices in educating disabled learners are discriminatory and haphazardly planned. The material effects of these practices on the actual provisions of education for these learners are then observed and evaluated. It is suggested that the education system be improved by including disabled learners in mainstream education, so as to help instigate positive changes in the lives of these learners through the wider process of social inclusion.     

Self-identity and the arts education of disabled young people

Overall, little is known about the ways in which disabled children and young people produce artwork or how they experience arts education. Neither is it known to what extent they are encouraged to produce work that engages with the expressive development of a sense of self that incorporates experiences of impairment and disability. This article is based on my recent PhD research which has investigated the ways in which a group of disabled young students are being enabled, via their arts education, to engage in a process of self-realisation whereby negative and oppressive perceptions of disability have been identified and addressed via their artwork. Whilst current post-social model discourses that emphasise the multiplicity or plurality of identity are acknowledged, my research has demonstrated that disabled young people can be empowered through the expression of the lived experience of impairment and disability and thereby encouraged towards a positive, inclusive and potentially multi-identity perspective.     

Characteristics of Four Kinship Placement Outcome Groups and Variables Associated with these Kinship Placement Outcome Groups

This study investigated factors that might be associated with the disrupted kinship care placements of abused and neglected children. Data were collected from face-to-face interviews of 130 kin caregivers who were randomly selected from lists provided by two child protection agencies and divided into four different outcome groups. Findings of the study revealed that characteristics of the children such as their health status, ages, and the extent to which they were getting into “trouble” were significantly associated with placement outcomes. The caregivers’ perceptions of the quality of relationships between themselves and the children in their care and the birth parents of those children were also associated with placement outcomes. Two other factors affecting outcomes were the frequency of contact between social workers and caregivers and the extent to which services plans were discussed. Practice implications related to these findings are discussed.