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Joint position statement on carers with learning disabilities from the Princess Royal Trust for Carers, Crossroads Care, Mencap, the National Family Carer Network, Who Cares for Us? and Respond
- Authors:
- PRINCESS ROYAL TRUST FOR CARERS, CROSSROADS CARE
- Publisher:
- Princess Royal Trust for Carers
- Publication year:
- 2010
- Pagination:
- 4p.
- Place of publication:
- Woodford Green
This easy read joint position statement was created to help organisations who help carers with learning disabilities to work better together and to help other people to understand the lives of carers with learning disabilities. Using brief bullet points the statement describes what a carer with a learning disability is; explains why it is difficult to know how many carers with learning disabilities there are; what they want; how they could be better supported; and the organisations that currently support them.
Supporting you and your family as you grow older together: a booklet for people with learning disabilities who live at home with an older family carer
- Authors:
- MAGRILL Dalia, PEARCE-NEUDORF Justin
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2010
- Pagination:
- 30p.
- Place of publication:
- London
A practical booklet for people with learning disabilities who are cared for by an older person in their family. It aims to help the family live together now, and also to think about things that may need to be done in the future. This booklet provides: good questions to ask; things that can help you now and in the future; and some of the people who can help you. It also looks at how to get ready for emergencies. Boxes to tick and write in are included throughout the booklet, providing a useful list of things to do or find out. This is one of a series of publications to come from the Mutual Caring project, set up to promote good practice and improve service provision for older families caring for people with learning disabilities.
Supporting you as an older family carer: a booklet to support older family carers of people with learning disabilities to get the right support now and to plan for emergencies and the long term
- Authors:
- MAGRILL Dalia, PEARCE-NEUDORF Justin
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2010
- Pagination:
- 50p.
- Place of publication:
- London
This booklet has been developed to help older family carers who are caring for people with learning disabilities to think and plan for the future as they get older. It covers: Getting the right support now; Practical support you may find useful; Preparing for emergencies; Preparing for the future. It aims to present different options and present a good starting point to finding solutions. It includes checklists and notes boxes to record information and service needs. It is one of a series of publications to come from the Mutual Caring project, set up to promote good practice and improve service provision for older families caring for people with learning disabilities.
Training personal assistants: help your PA to support you better
- Authors:
- PONTING Lisa, et al
- Publisher:
- Pavilion
- Publication year:
- 2010
- Pagination:
- 195p., DVD
- Place of publication:
- Brighton
This training pack, which is written by two service users with learning disabilities in association with the UK’s Norah Fry Research Centre, aims to assist service users with learning disabilities in helping their personal assistants (PAs) better support service users’ needs, hopefully resulting in “more choice and control in their lives”. The training booklet is in four parts, ‘good support’, ‘ideas for using the pack to train your PA’ at home and in groups, ‘photo stories’ and ‘notes for people who are paid to support us’, including detail on the background, history, current policy and practice of learning disability support, which could be copied and handed out by service users while they are training their PAs. The accompanying DVD includes real life clips made during this research of good practice in the giving of support, along with some scenes from the past illustrating ‘poor’ support. Each clip concludes with ‘a time to talk’ point. The five factors key to good support, respect, choices, ‘being friendly’, advice and ‘speaking up’ are featured in the DVD and throughout the booklet’s text and photo stories.
Brick by brick
- Author:
- FAWCETT Edd
- Journal article citation:
- Viewpoint, 117, July 2010, pp.16-19.
- Publisher:
- Mencap/Gateway
Noting that housing is high on the list of issues that impact on health, well-being and inclusion of people with a learning disability, this article discusses some of the barriers and solutions to getting the right home. It looks at council housing, the private rental market, affordable housing, housing associations, shared ownership and combined packages of accommodation and support. It highlights some of the difficulties faced by people with a learning disability in finding housing which meets their needs, and includes a case example from the Golden Lane Housing Southwest London Homefinder project, which helps people with a learning disability to rent a home.
'It is time to stop talking and start doing': the views of people with learning disabilities on future research
- Authors:
- MARRIOTT Anna, WILLIAMS Val, TOWNSLEY Ruth
- Journal article citation:
- Mental Health and Learning Disabilities Research and Practice, 7(2), Autumn 2010, pp.132-147.
- Publisher:
- South West Yorkshire Mental Health NHS Trust and University of Huddersfield
A scoping exercise to determine the research priorities for the field of learning disabilities for the next 10 years is described. Specific focus of this paper is on the role of people with learning disabilities in setting this research agenda. A detailed description of the methodology used is given. The first stage included a series of regional workshops involving people with learning disabilities, held in Bristol, Birmingham, Leeds and London which aimed to identify the main issues and problems in the lives of people with learning disabilities. Data from these identified six priority themes: access to health care; getting good support; the right to relationships; housing options; work and personal finance; and inclusion in the community. The literature was then reviewed for published research in these areas and then further workshops were held in all four geographical areas to identify research gaps. A focus group was then held with nine researchers in the field. A summary of the findings in the six priority areas is presented. It is commented that the findings show that it is possible to involve people with learning disabilities in setting a research agenda. Their inclusion provided a perspective that could not be adequately represented by other stakeholder groups. People with learning disabilities were concerned that research has a meaningful impact and can lead to demonstrable improvements in care. In order for this to happen there is a need for widespread dissemination of accessible outputs that reach the relevant stakeholders.
Where carers become the cared for
- Author:
- HOLMAN Andrew
- Journal article citation:
- Community Living, 23(4), 2010, pp.16-18.
- Publisher:
- Hexagon Publishing
Carers with learning disabilities are a hidden group within the population, and remain a largely neglected group. The article describes a campaign called ‘Who Cares for Us?' which is working with government and social services to make sure carers with learning disabilities are included in the new carers strategies. The Valuing People Now formed a National Network for Carers with Learning Disabilities, building on the work of 'Who Cares for Us'. The article acknowledges that more needs to be done, but ultimately supporting carers is an invaluable process, both for the community and the economy.
Facing the commissioning challenge: responding effectively to people whose behaviour is challenging
- Author:
- BERING Sandy
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 4(2), June 2010, pp.4-12.
- Publisher:
- Emerald
Securing better health and better care outcomes for people by effective use of public resources is at the heart of the commissioning agenda. Commissioning should ensure that the needs and wishes of people are well understood, and the market managed, so there are a range of local supports and provision available at a reasonable price. This is particularly important for people with intellectual disability whose behaviour is challenging, where effective clinically informed leadership is essential. Although models of good practice have been demonstrated for more than 20 years, making this happen on a wider scale remains the real challenge. Common wisdom about positive practice is not common practice in meeting identified needs. This paper aims to demystify the elements of effective commissioning roles, processes and the relationship of this work to positive outcomes in intellectual disability services, and to challenging behaviours. It highlights the case for a change in current common practice, explores some of the key barriers that must be addressed, and suggests key ways to achieve better outcomes.
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.
Building effective support for learning disabled parents
- Author:
- GORE Nick
- Journal article citation:
- Community Care, 18.11.10, 2010, pp.34-35.
- Publisher:
- Reed Business Information
The study, 'Being a family: parents with learning disabilities in Wales', published by Learning Disability Wales, conducted interviews with eleven parents who had learning disabilities and the professionals who support them. Parents with learning disabilities reported mixed experiences of services. The study also highlighted what parents felt was good support. The article looks at how the findings could inform better practice.