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Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care
- Authors:
- CAPLES Maria, SWEENEY John
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.64-72.
- Publisher:
- Wiley
Some two-thirds of the people registered on the Irish National Intellectual Disability Database live at home, with family members providing support. Use of respite care services by parents with a child/adult with an intellectual disability (ID) is growing in the context of social policy initiatives for greater social inclusion of people with disabilities. Parents often require assistance in this caring role, needing to be supported with reliable, flexible and responsive services. Parents often have to negotiate complex barriers to access support services such as respite, health or social care. This article draws on a recent Irish study that investigated the quality of life of 49 parents of people with an intellectual disability and who are using respite care. In general, results indicated that parents were experiencing good to excellent quality of life. However, demand exceeded supply, with many parents facing a lengthy wait gaining access to respite care. However, more research needs to be undertaken out to establish what services are deemed most valuable to parents.
‘It terrifies me, the thought of the future’: listening to the current concerns of informal carers of people with a learning disability
- Authors:
- MANSELL Ian, WILSON Christine
- Journal article citation:
- Journal of Intellectual Disabilities, 14(1), March 2010, pp.21-31.
- Publisher:
- Sage
- Place of publication:
- London
Carers of someone with a learning disability have additional responsibilities as the person they care for is often dependent on them for their overall health and well-being. The findings from a study that asked carers for their views on a wide range of topics are reported. A mixed method design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on ‘current concerns’. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Findings revealed such issues of concern to carers that included: access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role.
Too far to go: out-of-area placements of people with intellectual disabilities
- Authors:
- BEADLE-BROWN Julie, et al
- Journal article citation:
- Tizard Learning Disability Review, 11(1), February 2006, pp.24-34.
- Publisher:
- Emerald
This mainly exploratory study was a one-point-in-time survey of the situation of one English county. The study involved a survey of all social care homes in the country, followed by measures of quality of life/service for a random sample of 30 people identified by the survey, interviews with home managers, service users, family carers and care managers, and focus groups with members of four community learning disability teams. The total number of people placed out-of-area was estimated to be close to 2,000 (1,500 were placed by the local authority within the country). The main reason for such placements was lack of good local services, but cost also seemed important. For many of those who had been in long-stay hospital, locality appeared not to be important. Effects varied, but at least a third of people were experiencing very poor service quality and quality of life. Family carers generally felt their relative was happy, but fear of loosing placement was a strong theme. For local community learning disability teams, the main problems included increased workload, reduced provision for local residents, difficulty in dealing with placing authority and the poor quality of the homes. Challenges for public agencies include provision of better local services, management of the cost incentives, especially for London Boroughs, and a system where funding follows the person wherever they chose to live.
Well, we’ve all got to get old haven’t we?:reflections of older people with intellectual disabilities
- Author:
- THOMPSON David
- Journal article citation:
- Journal of Gerontological Social Work, 37(3/4), 2002, pp.7-23.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
The findings of a qualitative study of the perceptions and experiences of a select group of aging older people with intellectual disabilities are reported. The study data were drawn from the collective responses of 242 questionnaires completed by a group of older people with intellectual disabilities (ID) and their carers in the United Kingdom. The study was designed to provide qualitative insight into the lives of a select group of older adults from the vantage point of their perceptions and memories. Results suggest that the physical changes associated with aging do not appear to be a major concern for older people with ID. What is more of concern are other changes, only some of which are related to aging (such as, changes in the services and family circumstances).
Developing support and services for children and young people with a learning disability, autism or both
- Author:
- NHS ENGLAND
- Publisher:
- NHS England
- Publication year:
- 2017
- Pagination:
- 37
- Place of publication:
- London
The document provides guidance for Transforming Care Partnerships and their local partners in Clinical Commissioning Groups and Local Authorities in commissioning support and services for children and young people with learning disability, autism or both who display behaviour that challenges. It supplements Building the Right Support and the National Service Model, to ensure that plans are inclusive of children and young people. It is structured around nine core principles that describe what good services and support look like for children and young people. These include having a meaningful everyday life; person-centred and coordinated care and support; support for family and care staff to help the child or young person live in the community; choice about where to live; and access to specialist health and social care in the community. Each section lists relevant legislation and guidance. Appendices provide information on what works when working in partnership with families and describes how services should change as a result of the service transformation. (Edited publisher abstract)
Disability review 2009
- Authors:
- GREENHALGH Caroline, GORE Eleanor, (comps.)
- Publisher:
- Leonard Cheshire
- Publication year:
- 2009
- Pagination:
- 64p., bibliog.
- Place of publication:
- London
This is the third of a series of annual UK wide surveys produced by Leonard Cheshire Disability. The principal objective of the Review is to assess the experiences of disabled people across a number of key areas of life including: education; employment; health and social care; housing; transport and citizenship. It was compiled using responses to a detailed questionnaire that was completed by 1253 people drawn from across the UK. Respondents experienced a range of different impairments, were aged over 18 and included a mix of men and women, single and married, parents and non-parents. They were drawn from nine ethnic groups and from all regions of the UK.
Fulfilling the promises: proposals for a framework for services for people with learning disabilities; report to the National Assembly for Wales
- Author:
- LEARNING DISABILITY ADVISORY GROUP
- Publisher:
- Learning Disability Advisory Group
- Publication year:
- 2001
- Pagination:
- 83p.
- Place of publication:
- Cardiff
This report is based on the principle that people with learning disabilities are full citizens equal in status and value to other citizens of the same age and have an equal right to expect a high quality of life. In practice this means having exactly the same expectations of decent health, education, housing, safety and financial security, protection from harm, positive social relations and roles within family and community, employment opportunities, personal development, emotional well-being and civic rights. They also have a right to decide for themselves and to join in all decision making which affects their lives, with support if necessary of their families and their communities.
Dementia-related care decision-making in group homes for persons with intellectual disabilities
- Authors:
- JANICKI Matthew P., MCCALLION Philip, DALTON Arthur J.
- Journal article citation:
- Journal of Gerontological Social Work, 38(1/2), 2002, pp.179-195.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Alzheimer’s disease and related dementias affects a significant number of adults with intellectual disability (ID), in particular those with Down syndrome. Many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of affected adults. This study reports the outcome of a survey of group homes serving adults with ID and dementia, explores the onset, duration and effects of dementia, and speaks to the impact of these on planning for community care of adults with ID. It also examines emerging community care models that provide for “dementia capable” supports and services. Two models, “aging in place” and “in place progression” are examined, as well as “referral out” reactions, with regard to care practices and critical agency decision making.
Considerations in care for individuals with intellectual disability with advanced dementia
- Author:
- SERVICE Kathryn Pekala
- Journal article citation:
- Journal of Gerontological Social Work, 38(1/2), 2002, pp.213-223.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
A number of physical, psychosocial, or ethical issues related to the care of the individual with advanced dementia are reviewed and related to individuals with intellectual disabilities.The author notes that through anticipation and early planning, advanced directives and service planning (which looks to adaptation of services and other care management interventions), can effectively impact care at the end. Areas that need to be addressed include technical information, including a reviewof and, as appropriate, adaptation of general advanced dementia resources, relief, rest, support, reassurance, receipt of on-going information, participation in planning, a sense of humor, and appreciation. Also noted, are the differences experienced because of the presence of paid staff as carers and residence outside of the family home.
Barriers and supports for exercise participation among adults with Down Syndrome
- Authors:
- HELLER Tamar, HSIEH Kelly, RIMMER James
- Journal article citation:
- Journal of Gerontological Social Work, 38(1/2), 2002, pp.161-177.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Examines the impact of exercise barriers and carer attitudes regarding exercise outcomes on the exercise participation of adults with Down syndrome (DS). The sample included 44 adults age 30 years and older with DS and mild to moderate intellectual disability and their carers (family members or staff). Measures included personal characteristics of the adults with DS (age, level of adaptive behavior, and health status),carer perceived outcomes of exercise for people with DS, socio-emotional barriers, and access barriers to exercising. The significant determinants of exercise participation were carers' perceived outcomes of exercise for persons with DS and access barriers. When carers perceived greater benefits of exercise and when there were fewer access barriers, the adults with DS were likely to exercise more frequently.