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Journal article

Mothers caring for children and young people with developmental disabilities: intent to work, patterns of participation in paid employment and the experience of workplace flexibility

Authors:
CRETTENDEN Angela, WRIGHT AnneMarie, SKINNER Natalie
Journal article citation:
Community Work and Family, 17(3), 2014, pp.244-267.
Publisher:
Taylor and Francis

The Juggling Work and Care study was a South Australian cross-sectional mail-out and online survey for carers of children and young adults with developmental disabilities aged 0–25 years, which investigated work participation, work-life balance and psychological well-being. The study shows that mothers who were in a couple relationship and primary caregivers for their child (n = 287) were less likely to be in paid employment and worked fewer hours than mothers in the general population, regardless of age of child. Work participation was shown to be strongly related to the severity of child disability. Impacts of caring for mothers were significant. Over a quarter of mothers who had intended to work after the birth of their child had not done so. As well, many mothers who had returned to work reported reduced job opportunities and career progression. Of concern, 9 out of 10 mothers were unaware of their right to request a change in working arrangements to assist them to care. Changes in workplace support for carers, for example, awareness of legislation and flexible leave entitlements, as well as increased community supports such as appropriate and accessible (child)care, could improve the financial and social circumstances of families and result in significant benefits to Australia's economy. (Edited publisher abstract)

Journal article

Caring for a child with learning disabilities: over a prolonged period of time: an exploratory survey on the experiences and health of older parent carers living in Scotland

Authors:
CAIRNS Deborah, et al
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(5), 2014, pp.471-480.
Publisher:
Wiley

To examine the impacts of a lifetime of caring on older parents of offspring with learning disabilities an exploratory postal survey was completed by 100 older parent carers. The survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2). The reported survey is part of a larger mixed method study including in-depth interviews. The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. The findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals. (Edited publisher abstract)

Journal article

Dying for things to change

Author:
BATES Claire
Journal article citation:
Learning Disability Today, 14(3), March/April 2014, pp.24-25.
Publisher:
Pavilion
Place of publication:
Hove

Drawing on the findings from recent reports, and a health survey from the charity Choice Support, this article discusses the inequalities people with learning disabilities can face in primary health care settings. Choice Support surveyed its staff to investigate the experiences of supporting a person with a learning disability who had an unplanned stay in hospital. The results found a lack of understanding and training for NHS staff relating to the needs of people with learning disabilities. Choice support staff also considered the support they gave to a person in hospital as fundamental to a positive outcome. (Original abstract)

Journal article

Keeping safe and providing support: a participatory survey about abuse and people with intellectual disabilities

Authors:
NORTHWAY Ruth, et al
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 10(3), 2013, pp.236-244.
Publisher:
Wiley

As part of a broader 3-year participatory research study, a questionnaire was distributed to 47 participants with intellectual disabilities attending an event and as a postal survey across Wales to examine what help people with intellectual disabilities feel they need to keep safe and, if they are abused, what support they need. From this, 107 (56%) usable questionnaires were returned. Respondents identified most strategies for keeping safe as being useful but were more likely to identify personal strategies rather than actions other people could take. When abuse does occur, having a trusted person to speak to and one who will believe you were viewed as the most important aspects. The authors noted that people with intellectual disabilities can identify personal safety strategies and their views and experiences should inform personal safety courses and staff training. They recommend that effective circles of support need to be developed both to protect against abuse and to provide support should it occur. (Edited publisher abstract)

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Thinking ahead: improving support for people with learning disabilities and their families to plan for the future

Author:
TOWERS Christine
Publisher:
Foundation for People with Learning Disabilities
Publication year:
2013
Pagination:
28
Place of publication:
London

In the next 20 years, the number of people with learning disabilities aged 65+ is predicted to double. The greatest increase in life expectancy will be in people with mild learning disabilities who will have a comparable life expectancy with those in the general population of a similar socio-economic group. Therefore, families with people with learning disabilities will need to plan for their future care. The Thinking Ahead project aims to raise awareness about these concerns with policy-makers, local authority managers in social care and housing, carers’ organisations and more widely in the community. This report presents the findings of a survey about families' level of worry about the future, and how much help they have had in planning for a future when they will not around to support or care for a son or daughter with learning disabilities. The report also outlines findings from workshops and the development of a planning guide and its content. It recommends that policy and guidance on supporting people with learning disabilities and their families need to include statements on the importance of planning for the future, with requirements for local services to have a clear system to ensure future plans are developed. (Original abstract)

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Direct payments: a national survey of direct payments policy and practice

Authors:
DAVEY Vanessa, et al
Publisher:
Personal Social Services Research Unit
Publication year:
2007
Pagination:
149p., bibliog.
Place of publication:
London

Direct payments allow people to arrange their own social services. They give individuals control over the social care funding to which they are eligible, and are seen as an important vehicle for promoting independence and choice. Yet there are substantial variations in direct payment arrangements. This UK-wide survey suggests that direct payments packages are provided to people receiving more hours of care per week than the average social care recipient. Significant disparities between local councils were found in the proportions of eligible people receiving direct payments as well as in hourly payment rates, which may affect how individuals attain a fair stake in the market for social care. Also, there were wide variations in the proportion of local community care budgets spent on direct payments, both between areas and across user groups. These were largely reflected in the strength in developments for different users groups; 15.5% of the budgets of English authorities for people with a physical disability was spent on direct payments, compared to 1.1% for people with a learning disability, 0.8% for older people and 0.4% for people with a mental health problem.

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Direct payments: a national survey of direct payments policy and practice: executive summary

Authors:
DAVEY Vanessa, et al
Publisher:
Personal Social Services Research Unit
Publication year:
2007
Pagination:
5p.
Place of publication:
London

Presents the main findings of a UK wide survey of direct payments. The findings report on who was in receipt of direct payments, levels of expenditure, rates of payment, commissioning practices, the provision of support to direct payments users and factors aiding or hindering in the implementation of direct payments.

Journal article

Health service units for people with intellectual disabilities and challenging behaviour or mental health problems in England

Authors:
MANSELL Jim, RICHIE Fiona, DYER Ricinda
Journal article citation:
Tizard Learning Disability Review, 15(4), October 2010, pp.45-50.
Publisher:
Emerald

Following allegations of abuse in NHS residential units for people with intellectual disabilities, the Healthcare Commission carried out a national audit for specialist health services for people with intellectual disabilities. The audit comprised a national survey of health service in-patient units for people with intellectual disabilities, followed by visits to selected services. The survey included setting and patient characteristics, staffing and management arrangements, and care processes and outcomes. This paper summarises the published results, describing the characteristics of the services studied and comparing the different types of service (assessment and treatment units, low secure and medium secure units). It also compares National Health Service and independent sector units. The results raise a number of important issues. These include: in nearly two thirds of units some patients did not have an accessible care plan; independent sector units were bigger and had higher occupancy and lower staff ratios; a quarter of patients in assessment and treatment units had finished treatment but had no plans to move in the next month; and the large number of patients in low secure services with no clear specification of what the service is meant to do.

Journal article

Restraint, seclusion and PRN medication in English services for people with learning disabilities: administered by the National Health Service: an analysis of the 2007 National Audit Survey

Author:
STURNEY Peter
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 22(2), March 2009, pp.140-144.
Publisher:
Wiley

 The Healthcare Commission and Commission for Social Care Inspection (2007) recently reported such data from a large sample of units administered by the National Health Service (NHS). This study analysed data from The Healthcare Commission on the use of personal and mechanical restraint, PRN (as needed) medication and other restrictive procedures were analysed from 509 service units and 3902 service users. Approximately 80% of service units reported using PRN medication and approximately half of service units used personal or mechanical restraints. A small number of services units used restrictive procedures much more than most service units. A small number of service users experience a very large number of applications of restrictive procedures. Contemporary English services administered by the NHS and independent health care use restrictive behaviour management procedures commonly, including non-evidence-based practices, such as PRN medication. These services should focus resources on the small proportion of services units and service users and adopt evidence-based practices to safely reduce these restrictive procedures, enhance service user quality of life and ensure value for money from commissioned services.

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Insight: work fit for all: disability, health and the experience of negative treatment in the British workplace

Authors:
FEVRE Ralph, et al
Publisher:
Equality and Human Rights Commission
Publication year:
2008
Pagination:
14p.
Place of publication:
Manchester

This report published 27 November 2008, by the Equality and Human Rights Commission finds that disabled people and those with long term ill-health are facing higher levels of hostile and negative treatment in the workplace. A survey of nearly 4000 workers was conducted by the British Workplace Behaviour Survey 2008. It found that employees with a disability or long-term illness reported they were more likely to have negative experiences at work.

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