Facilitating Future Planning for Ageing Adults with Intellectual Disabilities Using a Planning Tool that Incorporates Quality of Life Domains

Abstract

When ageing families of an adult with a lifelong disability embark on a process of planning for the future, they generally think in terms of making hard and fast decisions about: (1) where the person with the disability is going to live when “the time comes”; and (2) who will take on their direct care. However, there is common trepidation among many families when it comes to launching their son or daughter with a lifelong disability. Generally, many families ignore, neglect, or simply do not engage in making any formal plans at all. When ageing families do make plans, they often focus only a place to live. This can mean that other significant aspects of a person's life (i.e., quality of life factors) are negated or neglected. Reviewing population demographics for both the Republic of Ireland and Northern Ireland, it was ascertained that a sizable number of parents will be aging in the near future and that some formalized assistance for future planning was needed. To this end, a planning instrument, What the Future Holds, was developed in order to help families and other carers with planning for the future and involving a variety of quality of life domains, including health, financial, vocational, social, civil, and residential well-being.     

Lesbian Health Care: Women's Experiences and the Role for Social Work

ABSTRACT

Lesbian patients and their families may be exposed to discriminatory practices in the health care system. This qualitative study of 57 Midwestern lesbian parents used open- and closed-ended questions to examine the experiences the respondents had with their primary and secondary health care providers. Four themes emerged from the data: systemic barriers to health care, coming out to providers, seeking lesbian, gay, bisexual, and transgender-friendly health care providers, and concern about mistreatment and prejudice within the health care system. Implications for service delivery, health care education, and directions in policy and research are explored.     

Measuring Family Caregiver Perceptions of Support in Caring for Children and Youth With Mental Health Concerns

ABSTRACT

This correlational study assessed how families of children with mental illness perceived the levels of support they received from informal and formal resource providers and the associations between perceived support and child outcomes. Adult caregivers (N = 904) of youth receiving public mental health care services were administered the Family Caregiver Perceptions of Support Scale developed by the authors to assess family caregiver perceptions of support prior to and at termination of services. Factor analysis identified three types of caregiver anticipated supports: informal support resources, support for treatment plan influence, and health care resources. The domains were significantly and positively associated with one another but did not uniformly correlate with youth mental health outcomes. The study provides preliminary evidence that treatment gains in youth mental health outcomes are observed when caregivers perceive support in treatment processes. Suggestions for future research are made, stressing the importance of caregivers and providers working together and describing needs related to future scale improvements.     

Health Care Fraud and Industry Structure in the United States

The cost of health care fraud and abuse is enormous. Not only is it costing us a lot of money but one wonders how many more people could afford and receive medical insurance if fraud and abuse were significantly lower. This paper will show that the problem is embedded in the way America does health business. The problem needs to be better addressed by both the criminal justice community and the health care industry. Most importantly, those making the health care industry policy decisions need to make a paradigm shift. The system is out of balance because of past policies and decisions that have given excessive power and liberty to the medical services community and insurance providers. Using O’Toole's Compass Card of the four major ideas that have influenced political decision‐making as a guide, this paper recommends that current decision‐making needs to strengthen the equality and community poles and restrict the liberty and efficiency poles so that more balance might exist within the American health care system. Talcott Parsons saw the dangers of commercializing health care over half a century ago. The health care scene of today shows that he was correct in his appraisal.     

Advance Care Planning in the Delivery of Adult Protective Services

ABSTRACT

In ensuring the safety and protection of older adults from abuse and exploitation, adult protective services (APS) workers face a variety of situations involving serious illness and end-of-life conditions. Many older adults encountered in APS will present with one or more chronic conditions that may warrant discussion of advance care planning with clients and their families. This study surveyed APS workers (n = 508) in 21 states regarding encounters with end-of-life situations and the practice of future care planning. Results revealed that three-fourths of APS workers encounter clients with serious illnesses and about two-thirds do discuss planning in advance for care. More than one-half of the respondents indicated client incapacity and refusal to address future care needs as barriers to discussing planning in advance for care. Recommendations to enhance advance care planning among APS workers are discussed.     

Utilization of Formal Support Services Among Hispanic Americans Caring for Aging Parents

Abstract

Most studies of formal service utilization among ethnic minority groups reveal little about the within-group variation in formal service use by caregiving families. The present study explores patterns of formal service utilization among 43 Hispanic caregiving families that vary according to differences in level of acculturation. In so doing, the utility of Andersen's behavioral model of health care service utilization is called into question.     

The unknown soldiers of foster care: Foster care as loss for the foster parents’ own children

Abstract

This paper explores the effects of the foster care experience on foster parents’ biological children. In spite of having been accepted for over 40 years as the best form of residential care for most children and adolescents requiring alternative living arrangements, very little research has been done into the foster care experience. Almost nothing is known about the effects of foster care on either the foster family as a unit or its individual members, yet one of the major concerns foster parents present is the effect of the foster care experience on their own children. This concern leads many experienced foster families to leave foster care and many potential foster families to decide not to foster. This paper discusses the losses experienced by the children of foster parents.     

End-of-Life Care and Social Work Education

Summary

Social workers are major service providers to people who are facing end-of-life issues including the terminally ill and their families. Yet, exemplary models for social work education and intervention methods are limited in rural states. A statewide survey conducted in Kentucky found only two social work courses dedicated to end-of-life care currently being offered by accredited undergraduate and graduate institutions. Another statewide survey found that many hospice social workers are relatively inexperienced and have a need and desire for more education on death, dying and loss. Also, unique cultural, economic and geographic areas, such as Appalachia are enigmas when it comes to the provision of end-of-life care. This partnership provides a varied perspective on delivery of end-of-life care services with an emphasis on social work interventions and education.     

Hospice and Latinos

Abstract

Research on hospice use by Latinos, although increasing since the late 1990s, remains sparse. This article presents a review of the recent available literature on this topic within the past 15 years. The main aspects discussed are access to hospice care and various factors that researchers suggest affect Latino utilization of hospice care. These factors include beliefs about health care, death and end-of-life care, lack of insurance, lower referral rates by health care professionals and the hospice caregiver requirement. Overall, Latinos underutilize hospice but the reasons remain unclear. No evidence exists to indicate that Latinos are dissatisfied with services once they receive them. Also, no evidence exists to indicate they want services but cannot obtain them. Implications for social work practice and research are discussed.     

Kinship Foster Care and Its Impact on Grandmother Caregivers

Summary

Kinship foster care programs are designed to address the needs of relatives, usually grandparents, who have taken in children who have been removed from their homes voluntarily, or following a substantiated report of neglect and/or abuse. The author reviews the history of kinship foster care nationally and examines related research. Reported are findings on a survey of kinship foster care programs nationwide and from qualitative interviews with nine grandmothers from New York City who were kinship foster care providers. Particular attention was paid in these surveys to the impact of kinship foster care on families caring for children with disabilities.     

The Effect of Housing on Perceptions of Quality of Life of Older Adults Participating in a Medicaid Long-Term Care Demonstration Project

Summary

As the nation struggles with the great increase in the numbers of older adults, many questions arise about how to provide housing and long-term care options that will ensure the quality of life of older adults. This study demonstrates that older adults and their families perceive quality of life more positively once moved from a nursing home to an assisted living facility using Medicaid funds. Results of this exploratory study are promising and suggest that having housing options available across the continuum of care with individualized case management offers older     

Palliative Healthcare: Cost Reduction and Quality Enhancement Using End-of-Life Survey Methodology

ABSTRACT

American medical institutions throughout the 20th century prescribed high customer satisfaction, but when it came to death, largely ignored it. An accelerated accumulation of esoteric medical information and the application of this knowledge to affect new cures and longer lives instilled an unquestioning reverence for the medical community among the patient population. Diminishing marginal gains in life expectancy, escalating costs related to life sustaining technologies, and a psychographic shift in the dominant consumer base have challenged this traditional reverence. Armed with unprecedented access to medical information, a more knowledgeable and assertive patient population has emerged in the 21st century to institute its own standards of what constitutes quality health care. In terms of end of life care, this has meant recognition that the emotional needs of the dying have been largely underserved by the current American medical model. Patients and their families are no longer willing to accept the traditional medical perspective of death as failure and have numerous international palliative care models that serve as benchmarks of success when it comes to quality of dying. When cure is a possibility, Americans will pursue it at all costs, but when it is not a possibility, they want honest communication and the opportunity to say good-bye to their loved ones. In the context of these emergent needs, life review is offered as a solution. The value proposition targets not only dying patients and their families, but also society as a whole.     

Chapter 17. Rural Mental Health

SUMMARY

Mental health services available in many rural communities are too limited in scope and availability to meet the needs of rural citizens. The future of mental health services for the rural poor will be impacted by state government decisions about Medicaid funding priorities. It is important that rural practitioners, especially those that work in the fields of mental health, health, and aging services, engage in advocacy for better coverage of the rural poor and low-income elderly persons. This chapter discusses issues of advocacy related to improving the provision of mental health services to older rural citizens as an important goal in the larger effort to expand and improve rural mental health service delivery throughout the nation.     

Chapter 18. The Aging Network and the Future of Long-Term Care

SUMMARY

Federal and state governments face a significant challenge in meeting the long-term care needs of an older population that will double in size between 2000 and 2020 and continue to increase through 2050. States have made significant improvements in their long-term care systems for the elderly. However, they are still spending a significant proportion of their long-term care funds on nursing homes. Any effort to improve long-term care for the elderly qualitatively, and not just on the margins, must be focused on developing a more flexible and balanced long-term care system that is responsive to consumer choice.

The Aging Services Network is poised to play a significant role in this transformation process. The strengths of the Network include the ability to develop and manage consumer-driven community-based programs; to assess the needs and resources of individual older persons and provide cost-effective community supports; to operate within fixed, capped budgets; and to identify and maintain roles for informal caregivers. Now is the time for national aging organizations, state units on aging, and area agencies on aging to use existing opportunities to move towards the establishment of a balanced system of long-term care.     

The Social Construction of Reality in the Realm of Children's Mental Health Services

ABSTRACT

Across the United States, systems of care have emerged to provide mental health care to children and their families; fragmentation inhibiting the success of collaboration by stakeholders is common and compromises these systems of care. Survey data were collected from 1,428 respondents in a Midwestern state to examine problems that exist within systems of care from the perspective of the different stakeholder groups. Stakeholder group membership was based upon the respondent's employment or involvement within various child-serving systems and included those in child welfare, juvenile justice, and education, mental health providers, and consumers (i.e., caregivers/parents). Group differences revealed patterns of “finger pointing” by the stakeholder groups on where specific problems exist within systems of care. The findings provide insight into how the social construction of service delivery and practice emerges as stakeholder groups describe, understand, and evaluate problems within the system of care as a function of their own practice location within the system of care. Future research should consider exploring methods that might minimize the competitive nature of disparate child-serving systems and its potentially negative impact upon system performance and treatment outcomes.     

A Comparison of Subsidized Guardianship and Child Welfare Adoptive Families Served by the Illinois Adoption and Guardianship Preservation Program

Abstract

This study compares the outcomes of 113 subsidized guardianship families and 733 child welfare adoptive families served by a therapeutic counseling program for adoptive/guardianship families at risk of child placement or dissolution. No significant differences are found in the percentage of children in placement at the end of services or the level or parental commitment to their children. Children in subsidized guardianship families are more likely to be minority children who are older at removal from their birth families and at placement with their current families. Also they are less likely to have a history of abuse than children in adoptive families.     

Health Policy in the Asian NIEs

This paper compares the health policies of Hong Kong, South Korea, Singapore and Taiwan with the purpose of drawing policy lessons. The study finds two distinct policy clusters: Hong Kong and Singapore on the one hand, and Korea and Taiwan on the other. With respect to provision of health care, the former rely largely on public hospitals for delivering inpatient care while the latter rely on private hospitals. In matters of financing, they are similar in that out‐of‐pocket is a major source of financing in all four countries. However, they are also different because Korea and Taiwan have universal health insurance while the city states do not. The study concludes that public provision of hospital care, as in Hong Kong and Singapore, yields more favourable outcomes than many mainstream economists would have us believe. Conversely, private provision in combination with social insurance, as found in Korea and Taiwan, severely undermines efforts to contain health care costs.     

Work and Care Strategies of European Families: Similarities or National Differences?

This paper examines the work and care strategies chosen by full‐time working families with children in Finland, Italy, Portugal and the UK. It asks whether European families in different countries, facing the same problems of balancing employment and childcare responsibilities, respond to their situations in similar ways. An increase in dual‐earner families where both parents work full‐time represents a general employment trend in today's Europe. Also, within families with children, such employment patterns are now more common than they were previously. National differences may therefore not any longer be as marked as often indicated by country‐based surveys. The qualitative data from the SOCCARE Project offer a way to examine this issue. The focal point of the paper is to make a comparative analysis of couples in similar work and care situations. Using their working hours as the common denominator, this paper analyses their daily childcare arrangements and how these are impacted by gender roles, working schedules, flexibility of workplace, income levels, parents’ educational background and availability of care facilities. The paper concludes that European families’ work and care strategies have many similarities whereby national differences may not be as marked as often indicated by contemporary research.