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Planning for the future with adults with a learning disability living with older carers
- Authors:
- GORFIN Laura, McGLAUGHLIN Alex
- Journal article citation:
- Housing Care and Support, 7(3), September 2004, pp.20-24.
- Publisher:
- Emerald
Planning for the future for adults with a learning disability who live with older carers is an important aspect of the white paper Valuing People. Most research about future planning has tended to focus on the perspective of the family carer rather than the service user. This paper considers the findings of a project which directly sought the views of adults with a learning disability, including their experiences of living with their older carers and planning for future housing and support. Demonstrates that adults with a learning disability are very aware of the likelihood of an end to family care and have preferences about their future housing and support. However, planning for the future can be difficult because of the mutually supportive relationships that often exist in these families.
Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability
- Authors:
- WALKER Ruth, HUTCHINSON Claire
- Journal article citation:
- Ageing and Society, 39(7), 2019, pp.1512-1527.
- Publisher:
- Cambridge University Press
The number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds. (Edited publisher abstract)
Supporting learning disability partnership boards to implement the national carers strategy
- Authors:
- MAGRILL Dalia, TOWERS Christine, MORGAN Hazel
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2009
- Pagination:
- 18p.
- Place of publication:
- London
This document aims to inform Learning Disability Partnerships about the National Carers Strategy. It includes information to ensure that local plans for all carers include carers of people with learning disabilities and carers with a learning disability. The document is in four parts, and covers: Joining up the National Carers Strategy and Valuing People Now; what the Government is already doing to support carers; Carers at the Heart of the 21st Century Families and Communities - the new National Carers Strategy and questions that a partnership board can use to check what is happening in their area to make the National Carers Strategy Happen.
The illusion of power
- Author:
- RIDDINGTON Carol
- Journal article citation:
- Community Care, 1.3.07, 2007, pp.32-33.
- Publisher:
- Reed Business Information
It is now almost six years since the establishment of learning disability partnership boards. Research has found that the partnership between public sector managers and lay members is not on equal terms as defined in the white paper Valuing People. Where primary care trusts cascade learning disability development funding to partnership boards it is possible to provide opportunities for people with learning disabilities to allocate money to enable "bottom up" initiatives to be supported.
Independent living: planning ahead
- Author:
- SANDERSON Helen
- Journal article citation:
- Community Care, 29.2.96, 1996, pp.6-7.
- Publisher:
- Reed Business Information
The author discusses changes in approach amongst staff making plans for people with learning difficulties.
Crisis, what crisis: positive crisis management in services for people with learning difficulties
- Authors:
- ELIATAMBY Anna, MISSEN Avril
- Publisher:
- Pavilion
- Publication year:
- 1996
- Pagination:
- 61p.,bibliog.
- Place of publication:
- Brighton
Looks in detail at issues of crisis management in services for people with learning difficulties. Draws on a variety of models to illustrate how services can actively anticipate and plan for crisis, so that the needs of service users and their carers are met in a positive and proactive way. Includes case studies, checklists and questionnaires.
Caregiving roles of siblings of adults with intellectual and developmental disabilities: a systematic review
- Authors:
- LEE Chung eun, BURKE Meghan M.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 15(3), 2018, pp.237-246.
- Publisher:
- Wiley
As individuals with intellectual and developmental disabilities (I/DD) grow older, many siblings anticipate becoming caregivers for their brothers and sisters with I/DD. However, there is little extant research about the caregiving roles of siblings. The purpose of this review was to extend the literature by conducting a systematic literature review about sibling caregiving. To better understand this population, a systematic literature review was conducted about adult siblings of individuals with I/DD to examine the definition of caregiving, sibling caregiving experiences, and correlates of sibling caregiving. In total, 29 relevant studies were identified. Results indicate that there is no consistent definition of sibling caregiving. Further, adult sibling caregivers reported caregiving benefits and challenges. The literature is also mixed with respect to the correlates of sibling caregiving. It is necessary to conduct additional research to understand sibling caregiving for individuals with I/DD. Implications for future research, policy, and practice are discussed. (Edited publisher abstract)
‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities
- Authors:
- DILLENBURGER Karola, MCKERR Lyn
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.29-38.
- Publisher:
- Wiley
As the population ages, the number of older carers of disabled children rises accordingly. This paper reports findings from a study of parents/carers of disabled children asking them about relationships, social support and future planning. These carers are often under a lot of stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Participants included 29 older parents/cares of 27 adults with intellectual and/or developmental disabilities. They were interviewed to investigate their views and experiences regarding long-term care and service arrangements, health and psychological needs and future planning. Results revealed a serious lack of support, respite care and future planning which caused high stress levels for caregivers. The authors concluded that policy makers and researchers working in this should take into consideration the needs of older caregivers when making future plans for adults with disabilities.
Constructing adulthood in discussions about the futures of young people with moderate-profound intellectual disabilities
- Authors:
- MURPHY Elizabeth, CLEGG Jennifer, ALMACK Kathryn
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(1), January 2011, pp.61-73.
- Publisher:
- Wiley
This paper investigated how those planning the futures for young people with intellectual disabilities create definitions of adulthood and interpret those in relation to young people’s perceived capacity to plan their own futures. Participants included 28 young people who transitioned from children’s to adult services. Data is composed of interviews with the young people, their carers and transition staff. Findings revealed two distinct views. One considered young people as adults entitled to self-determination, invoking policy injunctions to do so. The other qualified the young people’s adult status and claims to self-determination, emphasising the reality of intellectual disability. The authors concluded that that transition to adult services for those with intellectual disabilities highlights difficulties regarding the relationship between vulnerable young people, families, professionals and society. Reducing these to right and wrong creates an unhelpful context for good decision making. A more constructive approach would include all stakeholders concerning the correct decision.
Parental caregivers' desires for lifetime assistance planning for future supports for their children with intellectual and developmental disabilities
- Authors:
- HEWITT Amy, et al
- Journal article citation:
- Journal of Family Social Work, 13(5), October 2010, pp.420-434.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This article introduces a new model of future planning designed for parents of children with intellectual and developmental disabilities (IDD) called Lifetime Assistance and presents findings from a study examining the future planning needs of parents of children with IDD and their willingness to pay for a service such as Lifetime Assistance. The Lifetime Assistance model combines planning for financial and personal well-being with the use of a paid, designated lifetime assistant called a Quality-of-Life Specialist. These specialists help families of people with IDD plan for the future as well as monitor the quality of life and well-being of an individual when their family members are no longer able to provide care and, as such, become substitute advocates. Using surveys informed by four focus groups, data were gathered from 244 parents, mainly mothers, in a Midwestern US state regarding the potential program. The family member was usually younger than 21, with moderate mental retardation or other developmental disabilities. Respondents generally reported low levels of satisfaction with the current system of support. Although almost all families had identified a person to support their family members when they were no longer able to do so, a great majority of parental caregivers identified the need for the Lifetime Assistance program and many were willing to pay for this service themselves. Implications of the findings for practice are discussed.