Adults with a Learning Disability Living with Elderly Carers Talk about Planning for the Future: Aspirations and Concerns

The majority of adults with a learning disability live withfamily carers, many of whom are ageing and have support needsof their own. Planning for the future thus becomes the key topreventing a crisis situation when family care is no longerviable because of death or ill health. Existing knowledge andpractice are largely based upon the perspective of professionalsand carers. This study explores the views, aspirations and concernsof adults with a learning disability, about living at home andplanning for the future. Findings show that participants werevery aware of the need for alternative housing or support inthe future and had clear preferences about their future options.However, they also showed extensive concern for their familycarers and this often impacted on their willingness to planfor the future or to move to alternative housing. Their demonstrableawareness of the inevitable death or ill health of family carers,and willingness to engage with the implications, emphasize theimportance of involving adults with a learning disability inplanning for their future, as well as providing them with bereavementsupport.     

Allocating Homes for People with Intellectual Disability: Needs,Mix and Choice

Allocation of housing and support services for people with intellectual disability is based on three major sets of criteria: an assessment of the applicants' needs; considerations of social mix; and the applicants' own choices. This article examines the philosophical and institutional rationales underlying each of these notions and the tensions arising when seeking to achieve a balance between them. The first section of the article is based on a review of related studies in the UK, the USA and Australia, mainly on allocation policies in mainstream social housing. The second section presents original empirical work carried out in the state of Victoria, Australia, in 2007–08, illustrating some of the implications of a new balance that was created between needs, mix and choice in allocation of housing and support for people with intellectual disability. The article argues that the concepts of needs, mix and choice should be redefined in a way which reflects the interdependencies between them. Further, the article calls for more extensive mutual learning between studies of mainstream social housing and housing for people with intellectual disability.     

Combining Work and Care: Carers' Decision-making in the Context of Competing Policy Pressures

Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers’ decision‐making around work and care, drawing on evidence from interviews with 80 working‐age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers’ decisions and experiences about work and care. Key factors that impact on carers’ decisions are: current and anticipated financial need; the constraints arising from receipt of carers’ and other means‐tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers’ own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.     

Families of adult people with disability: Their experience in the use of services run by social cooperatives in Italy

Social cooperation has historically played a pivotal role in developing socio‐educational services for people with disability, thereby contributing to counteracting the social isolation often associated with this condition. Using a mixed‐method methodology, this study maps the diversity of perspectives on how the use of disability‐related services run by social cooperatives impacts on and becomes meaningful to family life. One hundred twenty‐nine interviews with family members of adults with different kinds of disability were studied using emotional textual analysis. It provides a multi‐dimensional model to read and map the multiplicity of emotional meanings related to disability and the use of services, shedding light on key diversities in how family members emotionally make sense of care and support. The results reveal the importance of supporting family‐carers on two main issues: accessing a less passive representation of their relative with disability; and being able to test and acknowledge limits without succumbing to a sense of powerlessness.     

From Provider to Enabler of Care? Reconfiguring Local Authority Support for Older People and Carers in Leeds, 2008 to 2013

Abstract

This article explores developments in the support available to older people and carers (i.e., caregivers) in the city of Leeds, United Kingdom, and examines provision changes during a period characterized by unprecedented resource constraint and new developments in national-local governance. Using documentary evidence, official statistics, and findings from recent studies led by the author, the effects of these changes on service planning and delivery and the approach taken by local actors to mitigate their impact are highlighted. The statistical data show a marked decline in some types of services for older people during a 5-year period during which the city council took steps to mobilize citizens and develop new services and system improvements. The analysis focuses on theories of social quality as a framework for analysis of the complex picture of change related to service provision. It concludes that although citizen involvement and consultations exerted a positive influence in delivering support to some older people and carers, research over a longer timescale is needed to show if these changes are adequate to protect older people and carers from the effects of ongoing budgetary constraints.     

Ageing Populations and Housing Needs: Comparing Strategic Policy Discourses in France and England

Set against a broad European policy agenda which promotes ‘ageing in place’ and representations of older people as active, independent citizens, this article compares recent English and French policy discourses on population ageing and its implications for the housing needs of increasingly large numbers of older citizens. Through analysis of six recent strategic policy statements representing each government's official responses to population ageing and its social policy implications for the 21st century, we demonstrate how differences in the social representation of the ageing process and of older peoples themselves permeate policy discourse, influencing the perceptions of the housing needs of older citizens and the role that housing itself may play in promoting independent living. In England, demographic ageing, housing and its role in facilitating independent living and active ageing are explicitly articulated, whilst in France, the housing environment has until recently, been portrayed as one which must accommodate the illness, incapacity and dependency of later life. Our article offers explanations for these differences in terms of cultural variations in the social representations or ‘constructions’ of later life, divergences in political philosophies and welfare principles.     

Absent Role of the State: Analysis of Social Support to Older People with Disabilities in Rural China

China is experiencing rapid population ageing and already has 44 million older people with disabilities aged over 59 years. Yet social support of these older people with disabilities is undeveloped and not well researched. This article contributes by using a disability rights framework (right to life and protection, economic security and social support) to analyze local cases in rural China. It finds that, although the family is still the main provider of economic and care support to rural older people with disabilities, the absence of a state role in welfare provision has negative impacts on the well‐being of older and younger generations in rural families.     

From Assistance to Prevention: Categorizing Young Carer Support Services in Australia,and International Implications

Young people who provide unpaid care for a relative with chronic illness or disability are a growing focus of public policy and research in Australia and internationally. Support services for these young carers have emerged, but not enough is known about their effectiveness. This article develops an analytical framework that categorizes young carer support services according to their goals and the types of intervention provided. The analytical framework is based on Australian data. It is applied to young carer support services available in Australia but may be applicable to other countries. The aim of the framework is to provide a structure for assessing the effectiveness of current services in supporting young carers by clarifying service goals and identifying gaps in existing service provision. The framework contributes to conceptual discussions about young carer supports, and it can be used to guide future policy development. The article draws on Australian and international literature as well as findings from a recent Australian study on young carers. The proposed framework groups young carer support services according to three overarching goals: assisting young people who provide care; mitigating the care‐giving responsibility; and preventing the entrenchment of a young person's caring role. The framework is applied to an audit of Australian support services for young carers, illustrating how it can be used to assess existing supports for young carers and inform future policy development. The findings suggest that most services in Australia fall into the categories of assistance and mitigation, while few contain preventative elements.     

“She was accused of colluding with the mother”; the training and support needs of parent‐and‐child foster carers: A qualitative study

Parent‐and‐child foster placements are used to accommodate parents with their children, either when the mother is a looked‐after child or as a setting for a parenting assessment. Despite this being a specialized role with significant potential for affecting outcomes for disadvantaged families, there is currently a lack of accessible learning opportunities for foster carers on the physical and mental well‐being of women with complex needs such as a history of domestic abuse, substance abuse, perinatal mental ill‐health, or having a learning disability. Parent‐and‐child carers experience some unique stresses and value the support of others with similar experiences; this kind of peer support is currently largely absent. This qualitative study has used ten focus groups with foster carers, eight interviews with mothers, and nine interviews with supervising social workers, to inform the development of an online learning resource and a social media‐based peer support network for parent‐and‐child foster carers.     

Senior centres in the lives of older Americans: implications for Chinese older adults

As a critical community resource, the senior centre has provided older Americans with a wide array of recreational, nutritional, health, and social service programmes. Funding resources include the Older Americans Act allocations, local organisations and governments, national charities, voluntary associations, and religious associations. The types of programmes offered at a senior centre reflect two models: social agency model or voluntary organisation model. The five most popular programmes are nutrition, health and fitness, recreation, volunteering, and social services. Participation in senior centre activities has positive impacts on the overall well-being of older adult participants. With the rapid growth in the ageing population and improved life expectancy in China, senior centres may serve as a focal point for Chinese older adults by providing a broad spectrum of social services to enhance the well-being of community-dwelling older adults, to support their independence and dignity, and to facilitate ageing in place in later life.     

Older Carers of Adults with a Learning Disability Confront the Future: Issues and Preferences in Planning

The Valuing People White Paper (Department of Health, 2001)requires services to secure a plan for all service-users withlearning disabilities living with older carers and promisesthem and their families more choice and control over how andwhere they live. This paper examines the views of the oldercarers (aged over seventy) of sixty-two adults with a learningdisability about planning for the future. Fifty-six took partin interviews in their own homes and six completed a questionnaire.All carers were white and recruited from one local authorityin response to the requirements of the White Paper. Findingsindicate that a significant proportion (thirty-four—55per cent) is either not ready or is unwilling to make futureplans. Barriers to planning include a perceived lack of needdue to the existence of two carers, a lack of awareness of timescalesinvolved in securing housing, difficulties in letting go, alack of confidence in available housing options, and the existenceof mutually supportive relationships. The findings show a needfor a proactive approach to information and support provisionto enable these families to work through a process of makingplans for the future. This is essential to prevent the needfor emergency placements in response to crisis and in turn toensure that adults with learning disabilities have genuine choiceand involvement in how and where they live.     

‘Replacement Care’ for Working Carers? A Longitudinal Study in England, 2013–15

In the context of rising need for long‐term care, reconciling unpaid care and carers’ employment is becoming an important social issue. In England, there is increasing policy emphasis on paid services for the person cared for, sometimes known as ‘replacement care’, to support working carers. Previous research has found an association between ‘replacement care’ and carers’ employment. However, more information is needed on potential causal connections between services and carers’ employment. This mixed methods study draws on new longitudinal data to examine service receipt and carers’ employment in England. Data were collected from carers who were employed in the public sector, using self‐completion questionnaires in 2013 and 2015, and qualitative interviews were conducted with a sub‐sample of respondents to the 2015 questionnaire. We find that, where the person cared for did not receive at least one ‘key service’ (home care, personal assistant, day care, meals, short‐term breaks), the carer was subsequently more likely to leave employment because of caring, suggesting that the absence of services contributed to the carer leaving work. In the interviews, carers identified specific ways in which services helped them to remain in employment. We conclude that, if a policy objective is to reduce the number of carers leaving employment because of caring, there needs to be greater access to publicly‐funded services for disabled and older people who are looked after by unpaid carers.     

Carer Break or Carer‐blind? Policies for Informal Carers in the UK

This article examines three policy statements on informal carers published in the UK in 1999—the National Strategy for Carers, the report of the Royal Commission on Long Term Care and the note of dissent by two members of the Royal Commission. These three documents contain two rather different approaches to policy for carers. On the one hand, the National Strategy and note of dissent emphasize respite care or short-term breaks for carers, and are concerned with sustaining the well-being of carers as well as ensuring the continuation of caring itself. The Royal Commission, on the other hand, emphasizes support for the older or disabled person who is being cared for, as a means of supporting the carer, and advocates "carer-blind" services. It is argued that this policy contains within it the potential to substitute for or replace the carer and that this represents a radical new departure for social policy for carers in the UK. The advantages and disadvantages of the two policy approaches are explored. It is argued that policies for carers should include both services specifically for carers, like breaks from caring, and services provided for the cared-for person, like domestic and personal care services. Wider issues about the proper boundary between family and state care are explored.     

Responding to child sexual abuse: an evaluation of social work by children and their carers

This paper presents the views and perceptions of 35 children and their current carers regarding the social work response to child sexual abuse. Interviews with the children and carers, including foster carers and residential carers, were carried out 2–4 years following disclosure, thus the nature of social work support in the longer term, as well as the initial response, is assessed and described. Three evaluations of social work support are presented: the child-ren's evaluations of social workers known since disclosure, and two evaluations from the carers, one focusing on the child's needs, and one focusing on their own as carers. All three evaluations perceived the majority of social workers as having helped. Aspects of social work considered essential included providing emotional support and reassurance, providing information and explanation and arrang-ing and coordinating services, including counselling or therapy.
  Carers of children who were abused by someone outside the family were less likely to receive social work support. The frustra-tion and disappointment expressed by some of these carers reaffirms the importance of assessing needs even when the child is considered protected from further abuse. The findings of this study support the need to refocus responses to abused children and their families.     

Sharing the care: the qualities sought of social workers by foster carers

Given that foster carers are a scarce resource it is essential that every effort is made to retain their services. This paper considers the role played by social workers in this endeavour. The results reported here form part of larger study, involving seven local authorities, concerned with the wider issues of supporting foster placements. The paper describes the qualities sought of social workers by foster carers and discusses the relationship between these qualities and the likelihood that carers will continue fostering. It was found that carers are highly satisfied with the job of fostering, are committed to it and view social workers as a vital source of support. Promoting good relationships between social workers and foster carers is therefore an important element in any strategy that aims to retain good foster carers.     

Contested Housing Landscapes? Social Inclusion,Deinstitutionalisation and Housing Policy in Australia

Deinstitutionalisation is represented as a major step toward social inclusion through the resettlement of disabled people residing in segregated large‐scale institutions into community‐based homes. By promoting the right to live in ordinary community residential settings, deinstitutionalisation fundamentally changes both the support services and housing arrangements of former institutional residents. In Australia, as in many western countries, debates on community care have tended to focus on the location and nature of non‐housing supports for people leaving dependent care. This focus, however, overlooks the fact that deinstitutionalisation involves a radical rehousing of people in care. This paper explores the character and implications of deinstitutionalisation in Australia as a rehousing process. It is based on a recent national research project that has examined the housing futures of people with intellectual disabilities who have been, or will be, deinstitutionalised. The paper considers the increasingly divergent socio‐political perspectives that have emerged in recent discussions about social inclusion, institutional reform and independent living and their implications for housing and community care policies.     

Towards Integrated Community Care for the Frail Aged

The growing awareness of family support among the frail aged has yet to be incorporated into a clear strategy for developing comprehensive community care. A starting point is to identify the characteristics of target populations, the range of tasks associated with aged care, and the capabilities of various informal and formal providers. Fully appropriate services would take into account the availability of family support as well as the needs of older people themselves. It is suggested that services be designed to (1) supplement support from spouses; (2) periodically substitute for other co-resident carers; (3) complement assistance from nonresident family; and (4) substitute for the unavailability of family support. Community services currently provide modest supplements, principally to nonresident support, but do little to address the other contexts of care. Suggestions are made for program developments that would provide genuine alternatives to institutionalisation without devolving the social costs entirely onto families.     

Support for Carers of Older People: The Roles of the Public and Voluntary Sectors in Sweden

This study examines the support services offered to informal caregivers, whether directly or indirectly, in Sweden over the period of a special investment initiative between 1999 and 2001. Data were collected in a Swedish county using two separate mail questionnaires in 1999 and 2001. The first questionnaire was addressed to each municipality in the region. The second questionnaire was sent to a random sample of voluntary organizations in the area. The findings showed that only the municipalities provided direct forms of relief service, day care and financial support. The voluntary organizations’ support for carers focused on support groups and training as well as services for older care users themselves. There was a significant increase between 1999 and 2001 in the number of municipalities providing information material and training for carers and using professional caregiver consultants. On the one hand, the Swedish public social care system appears to be following the international pattern in paying more attention to informal caregivers and investing in support services for them. On the other hand the findings did not show any growth in support provided by the voluntary organizations. Here Swedish welfare is dissimilar to other European countries, where it is increasingly common for voluntary organizations to play an important role as providers of support for carers.     

Individual- and Contextual-Level Factors Affecting the Use of Social Support Services among Older Adults

ABSTRACT

By 2060, the number of Americans aged 65 and older is expected to more than double, while the number of Americans aged 85 and older is expected to nearly triple. As the nation's aging population grows, older adults will need to rely on social support services, such as transportation and housing services, in order to remain active and lead independent lives. In this study we use data collected from the elderly supplement of the Southeastern Pennsylvania Household Health Survey (SPHHS) (n = 3,042) to explore the relationship between the availability of elderly specific social service providers and utilization of social support services among older adults. We find that while the number of elderly specific social service providers can increase use of social support services among older adults, its impact is relatively minimal. We find that individual factors, instead, are stronger predictors of service use. This is a finding that should be particularly encouraging for elder care providers who may not have the resources needed to undertake large structural changes (like building new facilities). Still, future research should explore how the availability of a broader range of elderly specific social services (than explored in this study) impacts use.     

What is a person‐centred approach? Familiarity and understanding of individualised funding amongst carers in New South Wales

Person‐centred approaches place individuals with a disability at the centre of decision making, with their carers and family invited to be partners in the process. Rather than being required to fit within existing service programs, person‐centred approaches enable individuals to choose the support options that best meet their needs. In order to facilitate this, person‐centred approaches will be accompanied by the introduction of individualised funding. This means the individual will be provided with funding to purchase services of their choosing. Given these significant changes occurring in the disability sector, Carers NSW surveyed informal carers of people with a disability to identify what they knew about person‐centred approaches and how they felt about their introduction. Survey results indicate that there is a need to increase the capacity and willingness of carers significantly in order to engage with person‐centred approaches and individualised funding. Carers require targeted and comprehensive information about these concepts in order to understand fully the changes occurring within the disability sector. These findings also indicate specific areas that need to be addressed in order to increase carers' awareness of these concepts and also to address existing negativity and confusion.