What do Potential Residents Need to Know about Assisted Living Facility Type? The Trade-off between Autonomy and Help with More Complex Needs

The current study surveyed 74 assisted living facilities to examine the effect of facility type on resident autonomy and the willingness of providers to admit residents requiring complex services. Facility types included adult family homes, residential care facilities, and traditional assisted living facilities. Adult family homes were more willing to admit residents with higher care needs. By contrast, assisted living facilities’ policies did not support the provision of intensive services, but their policies promoted higher resident autonomy, suggesting that consumers may have to choose between autonomy and help with complex needs when exploring assisted living for long-term care.     

Relational Autonomy in Assisted Living: A Focus on Diverse Care Settings for Older Adults

Consistent with Western cultural values, the traditional liberal theory of autonomy, which places emphasis on self-determination, liberty of choice, and freedom from interference by others, has been a leading principle in health care discourse for several decades. In context to aging, chronic illness, disability, and long-term care, increasingly there has been a call for a relational conception of autonomy that acknowledges issues of dependency, interdependence, and care relationships. Although autonomy is a core philosophy of assisted living (AL) and a growing number of studies focus on this issue, theory development in this area is lagging and little research has considered race, class, or cultural differences, despite the growing diversity of AL. We present a conceptual model of autonomy in AL based on over a decade of research conducted in diverse facility settings. This relational model provides an important conceptual lens for understanding the dynamic linkages between varieties of factors at multiple levels of social structure that shape residents' ability to maintain a sense of autonomy in this often socially challenging care environment. Social and institutional change, which is ongoing, as well as the multiple and ever-changing cultural contexts within which residents are embedded, are important factors that shape residents' experiences over time and impact resident-facility fit and residents' ability to age in place.     

Agency in advanced liberal services: grounding sociological knowledge in homeless people's accounts

This paper aims to understand how people who are homeless respond to advanced liberal social services that endeavour to promote their autonomy and responsible actions. We prioritize the experiences and positions of people who are homeless, and what agentic action means to them. Sociological literature is selective about what accounts are deemed agentic. Agency is associated with accounts that resist or subvert dominant neoliberal framings of homelessness as failure of individuals. When people experiencing homelessness or poverty themselves foreground autonomy or responsibility, sociologists treat them as cultural dopes who have internalized neoliberal discourse. Our analysis is driven by an ethnographic study in an Australian homelessness shelter. We demonstrate how people who are homeless neither outright reject nor completely embrace advanced liberal practices to influence their actions and promote autonomy. People engaged in relational reasoning. Paternalist and advanced liberal social services were both lauded and rejected for their capacities and limitations to realize a good life. We contribute to the discussion for sociology to value people's accounts and experiences, rather than broader social process explaining their accounts. From the perspectives of people who are homeless, we show that just because something appears neoliberal does not mean it should be automatically rejected.     

Long-term care policy and financing as a public or private matter in the United States

Effective approaches to assure adequate resources, infrastructure, and broad societal support to address chronic care needs are volatile and potentially unpopular issues that can result in many losers (those getting far less than they want) and few winners (those who gain access to scarce societal resources for care). In the United States, debates on long-term care involve a complex set of issues and services that link health, social services (welfare), and economic policies that often pit public and private sector interests and values against one another. Yet long-term care policies fill a necessary function in society to clarify roles, expectations, and functions of public, non-profit, for profit, individual, and family sectors of a society. By assessing and developing policy proposals that include all long-term care system dimensions, a society can arrive at systematic, fair, and rational decisions. Limiting decisions to system financing aspects alone is likely to result in unforeseen or unintended effects in a long-term care system that stopgap "fixes" cannot resolve. Three underlying policy challenges are presented: the need for policymakers to consider whether the public sector is the first or last source of payment for long-term care; whether government is seen primarily as a risk or cost manager; and the extent to which choice is afforded to elders and family caregivers with regard to the types, settings, and amount of long-term care desired to complement family care.     

Long-Term Care Policy and Financing as a Public or Private Matter in the United States

Summary

Effective approaches to assure adequate resources, infrastructure, and broad societal support to address chronic care needs are volatile and potentially unpopular issues that can result in many losers (those getting far less than they want) and few winners (those who gain access to scarce societal resources for care). In the United States, debates on long-term care involve a complex set of issues and services that link health, social services (welfare), and economic policies that often pit public and private sector interests and values against one another. Yet long-term care policies fill a necessary function in society to clarify roles, expectations, and functions of public, non-profit, for profit, individual, and family sectors of a society. By assessing and developing policy proposals that include all long-term care system dimensions, a society can arrive at systematic, fair, and rational decisions. Limiting decisions to system financing aspects alone is likely to result in unforeseen or unintended effects in a long-term care system that stopgap “fixes” cannot resolve. Three underlying policy challenges are presented: the need for policymakers to consider whether the public sector is the first or last source of payment for long-term care; whether government is seen primarily as a risk or cost manager; and the extent to which choice is afforded to elders and family caregivers with regard to the types, settings, and amount of long-term care desired to complement family care.     

The Program of All-Inclusive Care for the Elderly (PACE): an innovative long-term care model in the United States

This article examines the long-term care service system in the United States, its problems, and an improved long-term care model. Problematic quality of care in institutional settings and fragmentation of service coordination in community-based settings are two major issues in the traditional long-term care system. The Program of All-Inclusive Care for the Elderly (PACE) has been emerging since the 1970s to address these issues, particularly because most frail elders prefer community-based to institutional care. The Balanced Budget Act of 1997 made PACE a permanent provider type under Medicare and granted states the option of paying a capitation rate for PACE services under Medicaid. The PACE model is a managed long-term care system that provides frail elders alternatives to nursing home life. The PACE program's primary goals are to maximize each frail elderly participant's autonomy and continued community residence, and to provide quality care at a lower cost than Medicare, Medicaid, and private-pay participants, who pay in the traditional fee-for-service system. In exchange for Medicare and Medicaid fixed monthly payments for each participating frail elder, PACE service systems provide a continuum of long-term care services, including hospital and nursing home care, and bear full financial risk. Integration of acute and long-term care services in the PACE model allows care of frail elders with multiple problems by a single service organization that can provide a full range of services. PACE's range of services and organizational features are discussed.     

The Program of All-Inclusive Care for the Elderly (PACE)

Summary

This article examines the long-term care service system in the United States, its problems, and an improved long-term care model. Problematic quality of care in institutional settings and fragmentation of service coordination in community-based settings are two major issues in the traditional long-term care system. The Program of All-Inclusive Care for the Elderly (PACE) has been emerging since the 1970s to address these issues, particularly because most frail elders prefer community-based to institutional care. The Balanced Budget Act of 1997 made PACE a permanent provider type under Medicare and granted states the option of paying a capitation rate for PACE services under Medicaid. The PACE model is a managed long-term care system that provides frail elders alternatives to nursing home life. The PACE program's primary goals are to maximize each frail elderly participant's autonomy and continued community residence, and to provide quality care at a lower cost than Medicare, Medicaid, and private-pay participants, who pay in the traditional fee-for-service system. In exchange for Medicare and Medicaid fixed monthly payments for each participating frail elder, PACE service systems provide a continuum of long-term care services, including hospital and nursing home care, and bear full financial risk. Integration of acute and long-term care services in the PACE model allows care of frail elders with multiple problems by a single service organization that can provide a full range of services. PACE's range of services and organizational features are discussed.     

Autonomy in long‐term care: a need,a right or a luxury?

Doyal and Gough’s theory of human need highlighted that personal autonomy is a universal need and human right, essential for well‐being. In applying their theory to older disabled people in the UK the author suggests that their ‘minimally autonomous’ threshold would exclude some older people in long‐term care who still have a fundamental need for autonomy or, alternatively, extant autonomy. The disability movement has highlighted that independent living is fundamental to achieving self‐determination for disabled people and debate on equality and caregiving emphasises the autonomy of carers. However, there is a lack of recognition in both academic research and government policy of autonomy as a need and right of older disabled people. The author argues that autonomy is a human right of older people living in long‐term care settings, but that social rights are necessary to facilitate their autonomy.     

Targeting Services to Those Most at Risk

Abstract

The budget crises facing many state Medicaid programs have increased interest in the goal of linking services and housing as a way to provide more options to people with disabilities at less cost than institutional care. This article examines some of the premises underlying this interest, especially with respect to linking supportive services and federally subsidized housing for older persons. The first section provides a brief history of the activity in this area. The second section examines the risk factors associated with nursing home admission and how those factors match the characteristics of renters receiving subsidies. The third section focuses specifically on the likelihood that subsidized renters will also become eligible for Medicaid. The fourth section explores the capacity of housing programs to meet the challenges associated with service delivery. Finally, the conclusion examines the implications for public policy decision-makers interested in linking services and housing in order to address the long-term care (LTC) needs of older persons with modest incomes.     

Chapter Four

Mental health professionals contribute in important ways to both the clinical and ethical issues raised by cases of elder mistreatment. Their clinical competencies contribute to improving quality of life by diminishing psychological suffering and the symptoms of mental illness. They are also used for managing the ethical issues raised by these cases. The ethics of mental health care are based on the values of beneficence, nonmaleficence, autonomy, and justice. The value of autonomy in mental health care gives priority to an individual's long-term ability to act as independently, rationally, and fully in all aspects of life as possible. The concepts of legal and clinical competence also aid in managing the ethical problems represented by cases of elder mistreatment. The ethical protocols of mental health professionals may be distinguished from some other disciplines by the premium given to long-term autonomy and by the aim of insuring treatment for all persons involved in cases of elder mistreatment, rather than limiting treatment responsibilities to the victim.     

The Child of the Common: Governing Children in the Freetown Christiania,Denmark

Children in the intentional community of Christiania, Denmark, are seen as belonging to a flock. They experience a relatively high degree of freedom and autonomy as well as collective supervision/control. Departing from Foucault's conceptualisation of pastoral power and interviews conducted in Christiania, this article explores what the idea of the child as belonging to the common/collective may imply for the governance of children. A unique combination of freedom and supervision, individualism and collectivism, results in a form of responsibilisation that aims to strengthen the community, unlike neo‐liberal responsibilisation, which leaves the individual alone with the freedom to take care of herself.     

A place to heal: a qualitative focus group study of respite care preferences among individuals experiencing homelessness*

Homeless patients have longer hospital stays than housed persons due, in part, to a lack of safe discharge locations. Respite care for homeless individuals decreases hospital length of stay and readmissions rates. This study aimed to develop client-centered recommendations for medical respite care. We conducted four focus group interviews (n?=?25 participants) between August 2010 and February 2013 of homeless adult residents in Minnesota. Four domains of respite care were identified from content analysis of interviews: physical, relational, facilitation, and amenities. Novel recommendations include (a) a facility equipped to address mental health and substance dependence needs, (b) a standardized training protocol for respite staff, (c) the creation of a patient advocate, and (d) the creation of a respite case manager to facilitate post-discharge instructions and connection to primary care and social services. These new and actionable recommendations could help inform policies and the development of future medical respite care facilities.     

The family caregiving career: implications for community-based long-term care practice and policy

Informal (i.e., unpaid) long-term care for disabled older adults is often chronic, but it is only recently that research has considered the longitudinal implications of family caregiving. In particular, investigators have conceptualized caregiving as a "career," and within the caregiving career, a number of diverse trajectories and transitions can occur. Following a summary of these findings, this paper considers how longitudinal caregiving research can influence and potentially address key policy and practice concerns, especially in the delivery and support of community-based long-term care (CBLTC) services. It is suggested that with the refinement of the informal long-term care literature, existing policy and practice to support caregiving families can be similarly advanced.     

The care manager’s dilemma: balancing human rights with risk management under the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003

In New Zealand, the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003 provides diversion for persons with an intellectual disability who have been charged with, or convicted of, a criminal offence. This unique Act moves the responsibility for such ‘care recipients’ from the criminal justice system to a disability sector that values a social model of disability and philosophies of autonomy, choice and normalisation. This research identified dilemmas faced by care managers legally responsible for care recipients. Care managers experienced: tension between imperatives of risk management, rehabilitation and human rights; role ambiguity between ‘custodian’ or ‘therapist’; philosophical incongruity within their services; and ethical dilemmas over decisions to lengthen care orders. The changing care recipient population has intensified these dilemmas: services must now adapt to the needs of young, street-wise people with alcohol and drug problems and histories of criminal behaviour. The article makes recommendations about how these dilemmas can be addressed.     

A rights-based conceptual framework for the social inclusion of children and young persons with an intellectual disability

There is a basic principle that all children and young persons with intellectual disabilities should be able to enjoy citizenship on an equal basis with others. This includes enjoying personal dignity and exercising choice, control and freedom in social, community and cultural life, in keeping with their individual lifestyle preferences and aspirations. There is a need for a stronger human rights narrative to achieve this. This article identifies a conceptual framework for a rights-based approach to the integration of children and young persons with disabilities. Seven components of such a framework are identified: citizenship and social inclusion; recognition; agency; voice; capabilities; equality; and self-realisation. This framework was developed as part of an Irish case study involving consultation with young persons with intellectual disabilities, their parents or guardians and professional staff delivering support services. The rights of children/young persons with intellectual disabilities are essentially those of children generally. While this principle may be obvious in many respects, its implementation presents significant challenges. The need for a transformative narrative and its components are outlined.     

Distribution and utilization of home- and community-based long-term care services for the elderly in North Carolina

Provision of home- and community-based long-term care is a growing concern at the national, state, and local levels. As more persons grow old, the need for these services is expected to rise. This analysis examines the distribution and utilization of three home- and community-based long-term care programs in North Carolina for each of the state's 100 counties. Maps were generated to examine how counties differed in respect to service utilization among the elderly. Great variability was found in number of elderly utilizing the services across the state as well as the percent of Medicaid- and/or age-eligible persons who utilized the programs. Multivariate modeling for associations to service utilization was only possible for one of the long-term care programs. Results indicated that living alone, being non-white, and having a mobility and self-care limitation were all positively related to utilization. Percent of persons 85 years or older and the ratio of institutionalized long-term care beds were negatively associated with utilization. It was concluded that states must engage in concerted efforts to ensure equity in access to home- and community-based long-term care.     

Being a Citizen

There has been a striving in Sweden, ideologically and legally, since the 1960s to develop and extend citizenship to persons with learning disabilities. This article had the purpose to capture and describe how persons with learning disabilities conceive citizenship and opportunities to participate in the societal arena. Twenty-three persons with learning disabilities were interviewed two times. Qualitative analysis focused on three themes: areas of interest, voting and significant persons. The analysis displayed that the informants' conceptions about citizenship differed in relation to environmental contexts. Significant persons are discussed as having considerable importance when exercising citizenship.     

NO ROOM FOR ABUSE

In Canada, media reports on health care tend to focus on the high costs of the health care system; reporting privileges the economic aspects of this social service. In the Canadian system, long-term care or chronic care is a type of service that is situated within the health care system. Long-term care institutions typically house older individuals who have lost a significant amount of autonomy and require constant care. Until recently, the services dispensed within these institutions were unseen by the media, and thus the public did not reflect much on these services. The publication of the Report of the Royal Commission on the Future on Health Care in Canada in 2002 has fostered a growing public awareness of the vulnerability of older individuals and those with chronic illnesses, and their relationship with their care-givers. Although it may be the case that the typical care for such persons in these situations is now emerging from a zone of invisibility, it is uncertain that the media coverage accurately portrays the realities of institutionalized care-giving. This essay examines the care practices in long-term care institutions in order to understand the processes at work in an environment in which care is commodified. The ‘area’ in which this caring labour is located is an area where constant moral compromise can create a climate where abuse can become endemic. This paper considers these environments and the potential for abuse in them in relation to the concept of ‘grey zone’, first formulated by Primo Levi and later adapted by Giorgio Agamben and Claudia Card, as well as in relation to the related concept ‘bare life’, also formulated by Agamben. The author argues that the ‘greyness’ produced by care practices that are bound to a cost-effective and task-oriented framework create an environment that is not conducive to proper moral behaviour.     

Negotiating user preferences, discrimination, and demand for migrant labour in long-term care

The restructuring of long-term care for older people has been marked both by the role of the market and by the role of migrant labor. This article develops the analysis of these processes at the microlevel of the provision of care. It draws on data collected as part of a cross-national comparative study on the employment of migrant care workers in residential care homes and home care services for older people in England and Ireland. The article examines, first, the ways in which divisions of race, ethnicity, and citizenship shape the preferences of service providers/employers and some service users as regards who provides care. Second, it examines how the institutional context of quasi-markets in long-term care shapes the negotiation of demand for migrant labor, the racialized preferences of individual users, alongside the rights of care workers to non-discrimination. It is argued that market-oriented policies for personalization, as well as for cost containment, raise implications for divisions of race, ethnicity, and citizenship in the provision of long-term care. At the same time, those divisions point to the limits of framing care in terms of the preferences of the individual as opposed to the social relations in which care is embedded.