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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.
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.
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.
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.
Secure in-patient services for people with learning disability: is the market serving the user well?
- Authors:
- YACOUB Evan, HALL Ian, BERNAL Jane
- Journal article citation:
- Psychiatric Bulletin, 32(6), June 2008, pp.205-207.
- Publisher:
- Royal College of Psychiatrists
Psychiatrists can help in the development of better local services for people with learning disability by clearly defining the client group and their needs, involvement in the process of commissioning such services, and learning from colleagues in other service areas such as forensic psychiatry. This should help enable people with learning disability with very high needs to have similar access to services as others have.
Equality and access to human rights for people with both learning disability and mental illness needs
- Authors:
- LAWSON Annette, et al
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 2(2), June 2008, pp.3-8.
- Publisher:
- Emerald
The UK's policy architecture, goals and values, and its service frameworks, for people with disabilities have been set in the context of the global (United Nations) and European (EU) advances. This article examines the impact of these structures and contexts on people with learning disabilities and mental illness. It explores how identities which cut across recognised categories of disadvantage limit the rights of those with both learning disabilities and mental health problems, and looks at some of the ways in which this problem is being addressed.
FraX-E: underdiagnosed, undertreated, under-researched and misunderstood
- Authors:
- FREEMAN Laura, TURK Jeremy
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 1(3), September 2007, pp.40-51.
- Publisher:
- Emerald
This article focuses on the consequences of having FraX-E, a variant of fragile X syndrome. The authors provide some background on the condition and report on recent research and evidence. Three case reports are outlined and the specific behavioural aspects of the syndrome are considered. The authors argue that it is important that the behavioural phenotype for FraX-E is clearly identified and defined in order to give those with the condition relevant psychological and educational support in the future.
Policy and learning disabilities: a Scottish perspective
- Author:
- BROWN Michael
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 1(1), March 2007, pp.22-25.
- Publisher:
- Emerald
This article outlines the development of legislative and policy frameworks in Scotland with a particular focus following political devolution. The impact of these changes and developments on the lives of people with learning disabilities are discussed.
Construct and criterion validities of the Service Need Assessment Profile (SNAP): a measure of support for people with disabilities
- Authors:
- GUSCIA Roma, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 31(3), September 2006, pp.148-155.
- Publisher:
- Taylor and Francis
The Service Need Assessment Profile (SNAP) measures individual functional needs in areas of daily living. It produces a support profile, detailing the time allocations for staff support to assist in each area of need. The Supports Intensity Scale (SIS) is a support needs assessment scale designed to provide an objective measure of a person's need for support in medical, behavioural, and life activities. SIS can be used for individualised support planning, clinical judgements regarding support needs, resource allocation and financial planning. The Inventory for Client and Agency Planning (ICAP) assesses adaptive and maladaptive behaviours and gathers additional information to determine type and amount of special assistance that people with disabilities need. This study evaluated the construct and criterion validities of SNAP in relation to the SIS and ICAP, using assessment data from 114 individuals with a range of disabilities and levels of severity. Construct and criterion validities were supported for the SNAP by high correlations with SIS, ICAP, and staff estimates of support needs and by its capacity to discriminate between sub‐groups in expected ways. The results provide support for the use of SNAP as a support needs instrument.