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"I want to see the Queen": experience of service use by ageing people with an intellectual disability
- Authors:
- BIGBY Christine, KNOX Marie
- Journal article citation:
- Australian Social Work, 62(2), June 2009, pp.216-231.
- Publisher:
- Taylor and Francis
People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic individualised planning similar to the UK concept of person-centred planning.
Bridging aging and intellectual/developmental disabilities in research, policy, and practice
- Author:
- HELLER Tamar
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 16(1), 2019, pp.53-57.
- Publisher:
- Wiley
Bridging the fields of aging and intellectual/developmental disabilities (I/DD) in research, policy, and practice can improve the lives of people both in aging with I/DD and in older adults aging into disabilities. These two groups have both unique and common needs for health and long‐term services and supports. Examples of bridging include exchange of research, adaptation of interventions, and development of policy embracing ideas from both fields. Research exchange includes scoping reviews of health promotion and family caregiving interventions in aging and I/DD. Adaptations from aging include chronic disease self‐management, falls prevention programs, dementia caregiving, retirement planning, and end‐of‐life care. The Administration on Community Living programs in the United States are examples of policy initiatives that bridge aging and disabilities. Opportunities for bridging the fields of aging and I/DD exist, and there are numerous examples of productive practice. Moving forward, it is important to consider the influence of future developments, such as technology and universal design, on the bridging movement. Further research can benefit our understanding of how to improve the bridge between these fields to an even greater extent. (Edited publisher abstract)
Policy, plans and pathways: the ‘crisis’ transition to post-parental care for people ageing with intellectual disabilities in rural Australian carescapes
- Authors:
- GARNHAM Bridget, et al
- Journal article citation:
- Ageing and Society, 39(4), 2019, pp.836-850.
- Publisher:
- Cambridge University Press
The concurrent ageing of parental care-givers and people with intellectual disabilities is driving academic and social welfare concern for a post-parental care ‘crisis’. The ‘crisis’ typically pertains to a transition from primary care in the family home precipitated by the death or incapacity of older parents without a pre-planned pathway to post-parental care. This crisis is amplified in rural communities given low service engagement with families and a deficit of disability-supported accommodation and services. Academics, service providers and policy makers have responded through a problematisation of post-parental care planning. This focus continues to normalise informal care, burdens families with responsibility for planning, and diverts attention from structural deficits in the socio-political carescape. This paper attends to the Australian policy landscape in which long-term care-giving for families living with intellectual disability is enmeshed. It contends that the dyadic and didactic model of informal long-term care has profound implications for social service support and post-parental care planning. Problematisation of carers’ ‘need’ to relinquish primary care and for people with intellectual disabilities to transition to independent and supported living is necessary to unsettle the dominant policy and service discourse around the provision of services to sustain informal care-giving. Innovation is then needed to forge pathways of support for families in rural communities planning on continuing, transitioning and transforming care arrangements across the lifespan. (Edited publisher abstract)
Activity, aging, and retirement: the views of a group of Scottish people with intellectual disabilities
- Authors:
- JUDGE Joe, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(4), December 2010, pp.295-301.
- Publisher:
- Wiley
The structuring of daytime activities for older people with intellectual disabilities is often at odds with the views or needs of the people involved with these activities. The aim of this study was to understand the perceptions of people with intellectual disability with respect to the mandatory retirement from attending day centres. The participants were drawn from two Scottish local authorities, where local policy dictates that when an adult reaches the age of 65 they must retire from day services. Semi-structured interviews were conducted with 16 adults aged 41 to 64 and the resultant transcripts subjected to interpretive phenomenological analysis. Five themes emerged from the analysis: the importance of activity; the day centre as a social hub; confusion concerning retirement; desire for continuity; and the value of independence. The adults placed great value on participation in daytime activity and on attendance at local authority-run day centres. They wished to remain active well into old age and wished to contribute to their local communities. Disconcertingly, the participants highlighted the difficulties with their understanding of retirement and those who demonstrated a level of understanding felt that they had a disconnected role in the process. The article suggests that the provision of daytime activity for older people with intellectual disabilities should be scrutinised closely with respect to what people do as retirees and how they prepare for a change in lifestyle.
Change over 12 years in residential provision for adult persons with intellectual disabilities in Ireland
- Authors:
- McCONKEY Roy, GRAIG Sarah
- Journal article citation:
- Tizard Learning Disability Review, 23(1), 2018, pp.1-7.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland. Design/methodology/approach: Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups. Findings: From 2011 onwards, cuts in government funding coincided with a continuing reduction in the overall provision of residential accommodation for adults with ID. There was a parallel increase in the number of people living with family carers, especially persons aged 55 years and over. The greatest reduction was in residential centres which was in line with recent policy but this was not matched by an increase in alternative options, with fewer people aged 20-34 living in residential accommodation of any kind. Compared to Great Britain, Ireland has proportionately more residential places with fewer people living independently. Social implications: More Irish families have to continue caring for their adult relatives into their old age. Likewise, those resident in group homes and living independently are growing older which means there is an increased likelihood they will require additional support. Originality/value: This national data set is a valuable tool for monitoring changes in service provision over time and for determining the impact of government policy and funding decisions. (Publisher abstract)
Family caregiving of aging adults with Down syndrome
- Authors:
- HODAPP Robert M., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.181–189.
- Publisher:
- Wiley
Although persons with Down syndrome now live to approximately 60 years, the implications of increased longevity on family caregiving have received inadequate attention. Even compared with adults with other types of intellectual disabilities, by their late 40s and 50s adults with Down syndrome often show multiple health problems, cognitive-adaptive declines, and changes in daily work and activities. If alive, their parents are more often elderly, as mothers give birth to newborns with Down syndrome at a median age of 32 years (with high percentages age 40 and older). In addition, higher percentages of adults with (vs. without) Down syndrome live in their family homes and greater percentages may ultimately reside with siblings. Compared with caring for other adults with intellectual disabilities, ageing adults with Down syndrome may present earlier—and possibly more severe and more health-related—caregiving challenges to their parents and siblings. As a field and as a society, the authors note that there is a need to promote revisions of family support policies and interventions; recognise the inter-relations of aeging-related changes and their effects; and anticipate how aeging-related changes in the brother–sister with Down syndrome and the parent(s) might affect sibling caregivers. (Edited publisher abstract)