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)

Subject terms:

mothers, employment, learning disabilities, carers, wellbeing, surveys, flexible working;

Content type:

research

Location(s):

Australia

Link:

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ISSN online:

1469-3615

ISSN print:

1366-8803

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)

Subject terms:

carers, learning disabilities, ageing, older people, surveys, health, parents;

Content type:

research

Location(s):

Scotland

Link:

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ISSN online:

1468-3148

ISSN print:

1360-2322

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)

Subject terms:

learning disabilities, health inequalities, health needs, NHS, surveys, hospitals;

Content type:

research

Location(s):

England

Link:

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ISSN print:

1752-007X

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)

Subject terms:

learning disabilities, surveys, user views, adult abuse, safeguarding adults, participatory research;

Content type:

research

Location(s):

Wales

Link:

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ISSN online:

1741-1130

ISSN print:

1741-1122

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)

Subject terms:

learning disabilities, families, care planning, local authorities, person-centred planning, surveys;

Location(s):

United Kingdom

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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.

Subject terms:

learning disabilities, local authorities, mental health problems, direct payments, disabilities, surveys;

Content type:

research

Location(s):

United Kingdom

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ISBN print:

978 0 85328 072 9

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.

Subject terms:

disabilities, direct payments, learning disabilities, local authorities, mental health problems, surveys;

Content type:

research

Location(s):

United Kingdom

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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.

Subject terms:

learning disabilities, medium secure units, mental health problems, secure units, surveys, challenging behaviour;

Content type:

research

Location(s):

England

Link:

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ISSN print:

1359-5474

 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.

Subject terms:

learning disabilities, medication, NHS, residential care, restraint, surveys;

Content type:

research

Location(s):

England

Link:

Journal home page

ISSN online:

1468-3148

ISSN print:

1360-2322

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.

Subject terms:

learning disabilities, social exclusion, students, surveys, discrimination, employment;

Content type:

research

Link:

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Series name:

Insight Report; Autumn 2008

Series no:

1

ISBN print:

978 1 84206 077 3