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Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability
- Authors:
- TAGGART Laurence, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 16(3), September 2012, pp.217-234.
- Publisher:
- Sage
- Place of publication:
- London
Due to the increased life expectancy of people with intellectual disability, they are now more likely to be living with an ageing family carer. The aim of this study was to examine the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. A mixed methods design was employed. In stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers aged 60–94 years. In stage 2, 19 in-depth semi-structured interviews were undertaken with a sample of carers to explore a range of issues around future planning. Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. The main preference was for the person to remain in the family home, with either the family or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. Four main themes were identified around future planning: unremitting apprehension; the extent of planning; obstacles encountered; and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future.
The important things in life
- Journal article citation:
- Viewpoint, 131, November/December 2012, pp.14-17.
- Publisher:
- Mencap/Gateway
Decisions made on behalf of people with a learning disability and their families are often made without any input from the people they affect the most. Mencap's 'Listen and Learn' consultation programme was developed to find what is important to people with learning disabilities. The consultation used surveys, focus groups and interviews with people with learning disabilities, their family members or carers, Mencap members of staff and leaders of local Mencap groups. The results of the consultation are briefly discussed under the following themes: early years and childhood; making decisions about where to live, jobs and money; support for the whole family; healthcare; participation; staying safe; and relationships. Mencap intend to use the results to inform its work and planning over the next five years. (Original abstract)
Life support: the difference between a daily existence and a fulfilling life
- Author:
- UNITED RESPONSE
- Publisher:
- United Response
- Publication year:
- 2012
- Pagination:
- 15p.
- Place of publication:
- London
The Campaigns Panel is an informal network of people with disabilities or mental health needs who are supported by United Response as well as their relatives. This report has been produced by members of the Campaign Panel who have a learning disability and support need, or are relatives to someone who has. The report explores what good support means to people with learning disabilities and why it is crucial that any reforms to social care lead to better quality support. The participants were asked about what support meant to them, what they liked to do in life, what their views were, and what their thoughts were on the future. The report is illustrated throughout with quotes and visual images.
The future need for social care services for adults with disabilities in England 2012-30
- Author:
- NATIONAL INSTITUTE FOR HEALTH RESEARCH. School for Social Care Research
- Publisher:
- NIHR School for Social Care Research
- Publication year:
- 2012
- Pagination:
- 4
- Place of publication:
- London
Researchers at the Centre for Disability Research (CedR), Lancaster University collected information about the assessed level of eligibility for samples of children aged 14-16 identified as having special educational needs (SEN), and explored the relationship between SEN and disability. The aim was to estimate changes in the need for social care services for adults with disabilities in England between 2012 and 2030. The project builds on and extends the research team’s previous work on estimating future need for social care services among adults with learning disabilities over the time period. This summary of the research notes that estimates are based on “need” rather than “demand”; and that changes in demand are likely to outstrip changes in need because of the reduction in the capacity of informal support networks to provide care. (Edited publisher abstract)
Housing for people with a learning disability
- Author:
- MENCAP
- Publisher:
- Mencap
- Publication year:
- 2012
- Pagination:
- 50
- Place of publication:
- London
This report describes the current housing situation for people with a learning disability in England and Wales. It draws on the findings to two research projects to provide a picture of where people live now and what the future may look like for them in terms of their housing. It identifies the barriers to people living independently, from the way local authorities prioritise social housing to the lack of specialist housing for people with profound and multiple learning disabilities. It also looks at the impact of the Welfare Reform Act 2012 and suggests that the reforms will see greater numbers of people with a learning disability losing their independence. The report recommends the development of national strategy on housing for people with learning disability and for all local authorities to include specific plans for people with a learning disability in their housing strategy. The report aims to support decision-makers on issues relating to the provision of housing for people with a learning disability in England. (Original abstract)
Health and social functioning of adults with intellectual disability and autism
- Authors:
- UNDERWOOD Lisa, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(2), June 2012, pp.147-150.
- Publisher:
- Wiley
This brief report considers the mental health needs of adults with intellectual disability (ID) and autism spectrum disorders (ASDs). The study aimed to compare adults with ID and ASD receiving specialist mental health services with participants without ASD. The participants were 371 service users from a specialist, community-based mental health services for adults in South East London. Data were collected from a review of anonymised case records. A total of 117 of these participants (32%) had a clinical diagnosis of ID and ASD. Participants with ASD were younger, more likely to be male, less likely to live independently and had more severe ID than those without ASD. Furthermore, those with ID and ASD were less likely to be diagnosed with a psychiatric disorder but had significantly lower health and social functioning than those without ASD. The findings show that a significant proportion of adults with ID who are in receipt of specialist mental health services also have a clinical diagnosis of ASD. This group has different mental health needs compared with those without ASD.
Support and services for individuals with intellectual disabilities whose behaviour is described as challenging, and the impact of recent inquiries
- Author:
- COOPER Vivien
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 6(5), 2012, pp.229-235.
- Publisher:
- Emerald
An overview of recent high-profile exposures of abusive practices in services to people with intellectual disabilities and resulting inquiries, reviews and reports is provided in this paper. It describes the history of scandals exposing abuse of individuals with intellectual disabilities, and reviews investigations and inquiries, including action undertaken following Undercover Care: The Abuse Exposed, a 2011 BBC panorama programme about abuse of individuals with intellectual disabilities at the Winterbourne View private hospital. It considers the common themes and recommendations from the reports and discusses what the exposures and inquiries reveal about support and services for people with intellectual disabilities whose behaviour challenges services. The author, who is Chief Executive of the Challenging Behaviour Foundation UK, suggests what needs to happen to ensure that recommendations translate into action and deliver better outcomes for individuals.
The balancing act: meeting the needs of all children including an adolescent with disabilities
- Authors:
- KOCH Cecelia, MAYES Rachel
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(5), September 2012, pp.464-475.
- Publisher:
- Wiley
Meeting the needs of all children can pose a significant challenge to parents. The needs of children in any family may differ and compete; however this may be heightened when one child has a disability. The aim of this qualitative study was to explore parents’ experiences and strategies used when meeting the needs of all their children, including an adolescent with disabilities. The study was conducted in 2 phases: secondary analysis of ecocultural interviews with 12 parent-carers of more than one child, including an adolescent (10–21 years) with intellectual disabilities; and in-depth, semi-structured interviews with a sub-sample of 4 parent-carers. The findings showed that parents balanced their children’s needs through a combination of strategies driven by their goals, beliefs and values. Parents found this very challenging. They were always conscious of the needs of all of their children, although they could not necessarily meet all their children’s needs equally. Strategies that attended to all children simultaneously were preferred by most parents, but could not always be used. Parents, at times, used strategies that prioritised the needs of the adolescent with disabilities or siblings.
Disability and difference in higher education: be prepared for what you can't know
- Author:
- GEE Nick
- Journal article citation:
- Diversity and Equality in Health and Care, 9(2), 2012, pp.151-155.
- Publisher:
- Insight Medical Publishing
The last decade has seen a growing emphasis on addressing disability in main stream society through legislation to improve access to everyday living and working environments. This has resulted in a significant increase in the number of disabled students undertaking health and social care programmes at higher education institutions in the UK. Some disabilities are highly noticeable and easy to identify. Hidden disabilities such as intellectual impairment, Asperger’s syndrome and dyslexia are more difficult to recognise. This can lead to misinterpretations and misunderstandings when expectations are not met resulting in people with hidden disabilities, being ignored, excluded, or even becoming the target of hostility. This paper aims to explain some of these hidden disabilities and some of the responsibilities that higher education providers have towards students affected by these types of differences. The disabilities covered are; dyslexia; Asperger’s syndrome, autism, mental health difficulties, dyscalculia, dyspraxia; and attention deficit hyperactivity disorder.
Mental health needs in adolescents with intellectual disabilities: cross-sectional survey of a service sample
- Authors:
- HASSIOTIS A., TURK J.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(3), May 2012, pp.252-261.
- Publisher:
- Wiley
Despite mental health needs and service use being relatively high across the lifespan of those with intellectual disability, relatively little is known about these needs during adolescence. This study investigated the prevalence and predictors of mental health needs and service use in adolescents (n=75) with intellectual disabilities in one area of Southern England. Individual assessments were carried out, the main outcome of which was the presence of mental health needs measured by the Developmental Behaviour Checklist. Prevalence of mental health needs increased from 51% as reported by parents to 67% as judged by clinical interviews. Having a need was associated with low adaptive functioning, diagnosis of autism and family history of mental illness. High scores on parent reports of participant mental ill-health showed negative correlations with adaptive functioning scores. Most individuals were in receipt of social and health care. Half of the participants had sought help for mental health problems. Almost half of those receiving medication were on psychiatric medication. It is concluded that adolescents with intellectual disabilities may have considerable mental health problems that are functionally impairing but often unidentified and hence untreated. The authors believe that identification of those at risk and comprehensive needs assessment are essential to maximise potential and quality of life and to reduce further deficits and social exclusion.