Older lesbians' experiences with home care: Varying levels of disclosure and discrimination

ABSTRACT

There is considerable evidence that lesbian, gay, bisexual and transgender (LGBT) older adults have experienced barriers to health care access and have profound fears about how they will be treated in the long-term care system, but the specific experiences of older lesbians have received less attention. Most older adults needing long-term services and supports (LTSS) prefer to remain at home, and this is true for lesbians as well. This article reports on a national, qualitative study of the experiences of 20 older lesbians (age 65 and older) with home care workers. The experiences of six informal partner caregivers with home care services are also included. Emergent themes regarding level of disclosure, experiences with homophobia, evaluation of care received, and thoughts about ideal LTSS are described. Most study participants did not disclose their sexual orientation to their home care workers. A significant minority experienced homophobia, but nearly all ultimately found workers who provided good care with which they were comfortable. Their visions of ideal LTSS included greater affordability and particular qualities that were important for home care workers to possess, such as competence, caring and acceptance. Practice and policy implications are outlined including careful recruitment, training and supervision of home care workers to foster lesbian-sensitive care, but also improved wages and work conditions in order to maintain a quality home care workforce.     

An Examination of the Woodwork Effect Using National Medicaid Long-Term Services and Supports Data

A common concern in long-term services and supports (LTSS) policy is the “woodwork effect,” which has two components: (1) more people will use publicly funded services if access to home- and community-based services (HCBS) is expanded; and (2) the additional beneficiaries will increase the growth rate of LTSS expenditures. Medicaid LTSS beneficiary and utilization data starting in 1999 indicate modest growth in beneficiaries and expenditures, after adjusting for inflation and the number of people with functional impairments. The data do not provide strong evidence that the shift in Medicaid funding toward HCBS significantly increased or decreased overall Medicaid LTSS spending.     

Is There a Woodwork Effect? Addressing a 200-Year Debate on the Impacts of Expanding Community-Based Services

In U.S. social welfare history, many have suggested that if benefits were too attractive, consumers would come out of the woodwork to take advantage of the opportunity. Clinical trials have provided evidence of the woodwork effect’s existence, suggesting caution when expanding home- and community-based services (HCBS). However, it is unclear whether these studies are best suited to assess whether a system-level effect occurs. Using state and federal data tracking Ohio’s long-term services and support (LTSS) system from 1995 to 2015, this paper examines changes in the utilization rates and expenditures of Medicaid LTSS to explore whether a woodwork effect occurred as Ohio moved to improve its LTSS system balance (80% Nursing Home [NH], 20% HCBS) to (49% Nursing Home [NH], 51% HCBS). After accounting for population growth of individuals older than 60 and those with two or more impairments in activities of daily living, there was no change in utilization rates of older people with severe disability (1995: 491 per 1000 population, 2015: 495 per 1000 population) or overall LTSS expenditures (1997: $2.7 million [in 2013 dollars], 2013: $2.9 million). Our results suggest that states can make significant strides in HCBS expansion without increasing the overall long-term services utilization rate.     

Health Care Providers' Experiences with Problem Gamblers

The purpose of this study was to document health care providers' awareness of problem gambling and frequency of recognition and treatment. An exploratory survey was designed to collect data on awareness and knowledge of problem gambling. A structured questionnaire was completed anonymously by 180 health care providers (nurses, physicians, social workers, and other allied health professionals). Almost all respondents (96%) reported knowledge of problem gambling, and 30% reported asking clients about gambling problems when they presented with stress related symptoms. A third of the respondents reported identifying and treating clients for a gambling problem. The most frequently reported intervention was referral to counseling and other gambling resources. Respondents were generally interested in learning more about gambling problems, particularly those providers who have had a client discuss gambling related concerns. There were no significant differences in findings between provider groups.     

Disabled Women and Reproductive Rights

Both the women's and disability rights movements have paid scant attention to the concerns of disabled women, especially involving sexuality, reproductive freedom and mothering. Although their concerns may seem opposite of the women's movement's primary agenda, they are based on the same position: women must not be defined solely by biological characteristics and have the right to make decisions about their bodies and lives. Disabled feminists often support 'reproductive rights', but also have different perspectives on abortion and reproductive technologies than non-disabled feminists. The literature indicates that the reproductive rights of disabled women are constrained by: the assumption that disabled women are asexual; lack of reproductive health care, contraception, and sexuality information; and, social resistance to reproduction and mothering among disabled women. Disabled women are at risk for a range of undesirable outcomes, including coercive sterilization, abortion or loss of child custody.     

Safeguarding disabled children in residential settings: what we know and what we don't know

Research in America, Canada, Australia and Britain has revealed that disabled children are particularly vulnerable to abuse. Their likelihood of attending residential institutions, their dependency on others for personal care and the lack of opportunities for them to alert others to maltreatment or comprehend the nature of abusive acts all increase levels of risk. Over the last decade, there has been increasing public and professional concern about the abuse of children in residential establishments, resulting in a number of inquiries. However, the abuse of disabled children in residential settings has received little attention. Despite residential schools, care homes and respite care being widely used by disabled children, there is a paucity of knowledge regarding the standards of child protection in these establishments. This article explores the research literature revealing the vulnerability of disabled children to abuse when living away from home, what measures can be taken to help protect them and the limitations of available data as a basis for planning child protection measures. Copyright © 2002 John Wiley & Sons, Ltd.     

Does Home- and Community-Based Care Affect Nursing Home Use?

A study was conducted to assess change in numbers, expenditures, and case mix of nursing home residents as Medicaid investment in home- and community-based services (HCBS) 1915(c) waivers increased in seven states. The seven states provided Medicaid expenditure and utilization data from 2001 to 2005, including waiver and state plan utilization. The Minimum Data Set was used for nursing home residents. For three states, community assessment data were also used. In six states, the number of nursing home clients decreased as the numbers of HCBS clients grew. However, in most states, the number of additional waiver clients often greatly exceeded reductions in nursing home residents. Nursing home payments decreased moderately, but this decrease was offset by increases in HCBS waiver and state plan expenditures, leading to a net increase in long-term support services (LTSS) expenditures from 2001 to 2005. Increases in waiver expenditures outpaced increases in waiver clients, indicating expansion of services on top of expansion in clients. States that showed substantial increases in HCBS showed only modest increases in nursing home case mix. The case mix for nursing home residents was more acute than that for HCBS users. The expectation that greater HCBS use would siphon off less severe LTSS users and hence lead to a higher case mix in nursing homes was partially met. The more acute case mix in nursing homes suggests that HCBS serves some individuals who were previously cared for in nursing homes but many who were not. Efforts to promote substitution of HCBS for institutional care will require more proactive strategies such as diversion.     

Group Long-Term Care Insurance: Decision-Making Factors and Implications for Financing Long-Term Care

This study proposes and tests a systemic family decisionmaking framework to understand group long-term care insurance (LTCI) enrollment decisions. A random sample of public employees who were offered group LTCI as a workplace benefit were examined. Findings reveal very good predictive efficacy for the overall conceptual framework with a pseudo R² value of .687, and reinforced the contributions of factors within the family system. Enrollees were more likely to have discussed the decision with others, used information sources, and had prior experience when compared to non-enrollees. Perceived health status, financial knowledge, attitudes regarding the role of private insurance, risk taking, and coverage features were additional factors related to enrollment decisions. The findings help to inform policymakers about the potential of LTCI as one strategy for financing long-term care.     

Global Convergence: Aging and Long-Term Care Policy Challenges in the Developing World

Aging around the world poses a global challenge in eldercare. This challenge is particularly felt in low- and middle-income countries (LMICs), where population aging outpaces the development of aged care policies and services. This Perspective highlights the phenomenon of global convergence in several unsettling trends and challenges shared across LMICs. These include the weakening of informal family care systems for the elderly, growing need for formal long-term care of the frail and disabled who can no longer be adequately supported by family members, and mounting pressures for policy responses to tackle these societal challenges. It is argued that policymakers should take a proactive stance. That is, when family care for the elderly falls short and family caregivers are increasingly under strain, the government should step in and step up support to fill in the gap by developing appropriate policies and a continuum of long-term care services that are accessible and affordable for the majority of older people in need. Three general principles are then suggested with regard to long-term care provision, financing, and quality assurance, which transcend national borders and can be used to guide long-term care policymaking across LMICs.     

Long-Term Care Administrators' Perceptions of the Ombudsman Program in the State of Missouri

The presence of a long-term care ombudsman in a long-term care or nursing facility helps prevent abusive or neglectful situations before they start. Almost all Missouri long-term care facility administrators responding to the survey reported that they were aware of the ombudsman program; however, only half currently house an ombudsman in their facility. Respondents aware of the program were significantly more likely to currently accommodate an ombudsman in their facility, and those managing larger facilities were significantly more likely to currently have an ombudsman present. Given the numerous changes in the long-term care system, the need for more ombudsman advocates in this setting is crucial.     

湖南省解决农村贫困重度残疾人托养照护问题的实践与启示

解决农村贫困重度残疾人照护问题,既是党和政府的明确要求,也是残疾人和家属的热切期盼.湖南省农村贫困重度残疾人托养照护专项实践的主要启示:一是照护服务能有效改善农村重度残疾人生活质量和巩固脱贫攻坚成果;二是规划部署和经费配置是解决照顾问题的关键所在;三是"家庭自付+村社支持+政府补贴"的付费方式在实践中具有可行性和可持续性;四是农村地区需要优先发展保障急需的基本生活照护和寄宿照护服务,需要根据残疾人生活自理能力和家庭照护能力精准提供适合的照护服务.建议将"优先重点解决城乡低收入重度残疾人照护问题"纳入"十四五"规划及政府实事工程任务,加快建立以家庭照护为基础、社会化照护为支持、集中照护为补充的重度残疾人照护服务体系,完善以生活自理能力和家庭照护能力为核心指标的优先保障对象精准识别机制,通过"两补提标"、建立家庭照护和集中照护机构统一认定制度、评价制度和支持机制,完善残疾人帮扶机制.     

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.     

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.     

A Budget Proposal for China’s Public Long-Term Care Policy

Long-term care (LTC) policy is at an experimental stage in China, characterized by various regional pilot programs. The public cost of LTC is difficult to estimate due to a lack of clarity about policy detail from the central government. This article analyzes the current disabled status for vulnerable older people without sufficient financial resources and family supports. It focuses on estimating a safety net public subsidy policy for LTC services in China, both for today and into the future, using China Health and Retirement Longitudinal Survey (CHARLS) data, 2011 wave, with the methods of multinomial logistic regression and simulation. The key contribution is to estimate the future disability trend and LTC public cost based on changes in education, population ageing, and urbanization. Disability prevalence might be decreasing partly due to higher education, urbanization, and better health care, and the overall public LTC costs might be growing by the results of projection.     

The Woodwork Effect in Medicaid Long-Term Services and Supports

This paper examines annual real per capita Medicaid long-term services and supports (LTSS) expenditures (in 2010 $) over the period 1995 to 2010. Medicaid community LTSS expenditures increased substantially. If that trend constituted a woodwork effect, expenditures on institutional services should have declined more slowly than community expenditures increased, resulting in total expenditures increasing over time. Such a woodwork effect is observed for the population with intellectual and developmental disabilities (IDD) but not for the non-IDD population, composed of persons with disabilities other than IDD, including older persons. During this time period, the goals for serving people with IDD changed; institutional and community cost-neutrality rules were relaxed (and with that concerns over a woodwork effect), and instead goals of community involvement and participation were emphasized for all eligible persons. For the non-IDD population, tighter adherence to cost-neutrality rules and controls over nursing home reimbursements may have helped avoid a woodwork effect as community expenditures increased. With the passage of the Americans with Disabilities Act in 1990, goals have changed for people with disabilities of all ages, and the notion of a simple trade-off between institutional and community service costs that constitutes the woodwork effect must be complemented with a much broader idea of cost analysis that values independence and community participation for people with disabilities of all ages.     

Organizing survival and resistance in austere times: shifting disability activism and care politics in Ontario,Canada

Following the 2008 financial crisis, all levels of Canadian government implemented austerity measures that dramatically restructured welfare, employment, and social service infrastructures. This has significantly affected how disabled people access services. We argue that this restructuring has been an impetus for new forms of disability activism and care politics in Ontario as disabled people fight for services necessary for survival. We discuss examples of politicized forms of care and resistance in Ontario, namely self-care, the Ontario Direct Funding programme, and collective forms of care. We contend that while these examples of care can be practical modes of resistance, they can all be co-opted and restructured to suit neoliberal ideologies and must therefore be continually interrogated.     

Health care,social care or both? A qualitative explorative study of different focuses in long-term care of older people in France,Portugal and Sweden

Challenges with an ageing population are increasingly becoming a reality in the Western world. Since cognitive impairment increases with age, we can expect an increasing number of older people in need of care. The aim of this article is to describe, analyse and compare different focuses on care of older people with dementia, using examples from France, Portugal and Sweden. The questions are principally focused on the participants’ view about their tasks, the organisation of work, the professional role and cooperation with other professions. Everyday care was studied through observations and participant observations and the staff's opinion was explored by means of interviews. Twenty-two care settings for older people were included. The findings showed that France provided mainly ‘health care’, Sweden ‘social care’ and Portugal an integrated ‘health care and social care’. In a comparative perspective the Portuguese general care of older people, which focuses on integration of health care, social care and social work, also seems to provide care for older people suffering from dementia which best corresponds to the previously developed group living model.     

Does Nursing Home Ownership Change Affect Family Ratings on Experience with Care?

Person-centeredness may suffer in nursing homes (NHs) with recent ownership changes. This study identifies associations between ownership change and reported care experiences, important measures of person-centered care for long-term residents in Maryland NHs. Care experience measures and ownership change data were collected from Maryland Health Care Commission reports, which reported data on 220 Maryland NHs from 2011 and 2012. Facility and market covariates were obtained from 2011 NH Compare and Area Health Resource Files. Linear regression was used to examine whether ownership change in 2011 was associated with lower care experience ratings reported during April to June 2012. Dependent variables were overall care rating (scale 1–10), percentage of respondents answering that they would recommend the NH, and assessments of five care and resident life domains (scale 1–4). Care experiences reported in 2012 were high; however, after controlling for covariates, ownership change was associated with significant decreases in 6 out of 7 measures, including a 0.39-point decrease in overall care rating (p = .001). NH managers and policy makers should consider strategies to improve patient-centeredness after ownership change.     

Physically disabled women and sexual identity: a PhotoVoice study

The issue of sexuality for young disabled women is not often talked about in society. Our study aimed to explore four young physically disabled women’s experiences and perspectives regarding sexuality and disability. We used PhotoVoice, a participatory action research method which uses photographs, to capture and convey our participants’ concerns. Through their photographs they showed that everyday interactions with others, particularly strangers or meeting people for the first time, were made difficult by how they were always seen as having a disability. Other parts of their identity were not recognised. The change the young women wanted was for people to see them as young women and not just as disabled.     

Comparing Long-Term Care Recipients in Urban and Rural Municipalities in Japan and Sweden

Japan and Sweden both have national systems of long-term care (LTC) and face similar challenges. This study compared various indicators of disability in LTC recipients in nine large urban, midsize urban, and rural municipalities in both countries. The aim was to establish whether urban-rural differences exist and whether they follow similar patterns in Japan and Sweden. It was found that LTC recipients in large urban municipalities in both countries were on average significantly less disabled than those from the other types of municipalities, regardless of the indicator for disability. Fewer persons in large urban municipalities live in extended families, which may increase the propensity to apply for LTC. The number of older people living alone in Japan is increasing, which means that the formal LTC system will come under increased pressure.