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Involve Me
- Author:
- -
- Journal article citation:
- Viewpoint, 124, September 2011, pp.20-21.
- Publisher:
- Mencap/Gateway
Involve Me is a 3-year project on increasing the involvement of people with profound and multiple learning disabilities (PMLD) in decision-making, through supporting people to make personal decisions and influencing decision-makers. It looked at decision-making at 4 levels: personal decisions in everyday life, decisions about the immediate environment (such as in a group home), community decisions and national decisions. The findings of the Mencap and British Institute of Learning Disabilities project have been used to produce recommendations and resources for those involved with services for people with PMLD, including a practical guide to involving people with PMLD. This article describes the project and its key activities (including sharing stories, creative communication, multimedia advocacy and peer advocacy) and key messages. It includes a brief case study.
Choice of living arrangements
- Authors:
- STANCLIFFE R.J., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 55(8), August 2011, pp.746-762.
- Publisher:
- Wiley
The rights to choose one’s home and living companions is widely endorsed but for individuals with intellectual disabilities the choice often involves a more complex interaction than for those whose lives are more autonomous. This study aims to provide a benchmark on the degree of choice exercised by adult service users in the USA using data came from the National Core Indicators programme. Participants were 6778 adult service users living in non-family-home service settings in 26 US states. The responses reveal that most adults with ID did not participate in choosing where and with whom to live. Those with more support needs because of more severe ID and/or co-occurring conditions had least choice. Individuals living in their own home or an agency-operated apartment more often chose where and with whom to live than individuals in nursing homes, institutions or group homes. Few individuals with severe or profound ID had any choice irrespective of their accommodation. The authors conclude that despite community-living policies that emphasise choice, many adult service users with ID in the USA experienced little or no choice about where and with whom to live.
Day services for people with profound intellectual and multiple disabilities: an analysis of thematically organized activities
- Authors:
- PUTTEN Anette van der, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(1), March 2011, pp.10-17.
- Publisher:
- Wiley
A recent idea to emerge in the Netherlands for improving the quality of activities provided for people with profound intellectual and multiple disabilities is to organise these activities of thematically, with activities offered in thematic rooms at a centre where clients spend the whole day. This in-depth study aimed to analyse the nature and duration of activities organised according to theme offered at a particular day service centre. The study focused on 23 adult attendees with profound intellectual and multiple disabilities. Information was collected on the number, type and length of activities offered and the duration of individual attention each attendee was given during activities. The study found that 63% of the activities were care-related activities (such as starting and finishing the day, waiting and resting), and that the other type of activities offered showed less variation than expected, with watching television or listening to music representing a substantial part of the programme and artistic and creative activities or playing and games offered less frequently. More time was spent giving attention to individuals than to the group when compared with non-thematic centres, but the percentage of individual attention provided was highest during care-related activities. The expected effects of using a thematically centred model, such as less waiting, more variety, and more individual attention, were only partially found, and the authors suggest that further research is required.
Spread your wings
- Authors:
- ELLIOTT Sonja, BURNS Leann
- Journal article citation:
- Learning Disability Today, April 2011, pp.34-35.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The Butterfly Project is a social enterprise based in the London Borough of Newham which uses a personalised approach to work with young people with complex learning disabilities as they transition into their adult lives. After providing an overview of the project, the article uses a case vignette to illustrate how the service can support young people with learning disabilities.
Involve me: practical guide: how to involve people with profound and multiple learning disabilities (PMLD) in decision-making and consultation
- Authors:
- MENCAP, BRITISH INSTITUTE OF LEARNING DISABILITIES, RENTON FOUNDATION
- Publisher:
- Mencap
- Publication year:
- 2011
- Pagination:
- 72p.
- Place of publication:
- London
People with profound and multiple learning disabilities are some of the most excluded in society. The Involve Me project focuses on how to involve them in decision-making and consultation. This guide to how to involve people with profound and multiple learning disabilities is partly based on an independent evaluation of the Involve Me project. It includes a description of the 4 Involve Me sites and approaches to involvement, and a summary of recommendations from the evaluation. The guide covers involvement in choice and decision-making, capacity and consent for people with profound and multiple learning disabilities, the key Involve Me messages, and information about the accompanying DVD resource which contains information and materials to support the Involve Me key messages.
Involve me: increasing the involvement of people with profound and multiple learning disabilities (PMLD) in decision-making and consultation
- Authors:
- MENCAP, BRITISH INSTITUTE OF LEARNING DISABILITIES, RENTON FOUNDATION
- Publisher:
- Mencap
- Publication year:
- 2011
- Pagination:
- 15p.
- Place of publication:
- London
The Involve Me project focuses on how to involve people with profound and multiple learning disabilities in decision-making and consultation. It defines people with multiple learning disabilities as those who have more than one disability, have a profound learning disability, have great difficulty communicating, need high levels of support, may have additional sensory or physical disabilities or complex health needs or mental health difficulties, and may have challenging behaviours. This short booklet provides a summary of the project, the 8 key Involve Me messages, and what is on the accompanying Involve Me DVD resource.
Health status, social support, and quality of life among family carers of adults with profound intellectual and multiple disabilities (PIMD) in Taiwan
- Authors:
- CHOU Yueh-Ching, CHIAO Chi, FU Li-Yeh
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.73-79.
- Publisher:
- Taylor and Francis
Several studies have indicated that having an adult with severe intellectual disability in the family is associated with a major increase in caregiving demands. Profound intellectual and multiple disabilities is characterised by an individual who is diagnosed with a low IQ and more than one disability. The aims of this study were to describe the characteristics of the primary family carers of adults with profound intellectual and multiple disabilities, and then to provide a profile of carer health, social support and quality of life for them in comparison to primary family carers of adults with less severe intellectual disabilities. 796 family primary carers in Hsinchu City in Taiwan were interviewed. Analysis of the data showed that health status, formal social support, and quality of life of carers of adults with profound intellectual and multiple disabilities were significantly lower than carers of adults with less severe disability, with these variables significantly associated with carer educational level, employment status, family income, and social networks. The researchers conclude that family carers of adults with profound intellectual and multiple disabilities from lower socioeconomic status groups have become the most vulnerable and have higher support needs. They suggest that future studies should incorporate qualitative and longitudinal components to explore and observe the conditions and unique needs among adults with profound intellectual and multiple disabilities and their family carers.
Projections of demand for social care and disability benefits for younger adults in England: report of research conducted for the Commission on Funding of Care and Support
- Authors:
- SNELL Tom, et al
- Publisher:
- Personal Social Services Research Unit
- Publication year:
- 2011
- Pagination:
- 17p.
- Place of publication:
- Canterbury
Using an adapted version of a projections model for younger adults developed by the Personal Social Services Research Unit (PSSRU), this paper provides projections of demand and future public expenditure for social care and disability benefits for younger adults (aged 18 to 64) in England to 2030. Projections are broken down in the categories of: people with learning disabilities; people with physical or sensory impairments; other groups (such as people with mental health problems) combined. The paper describes the various data used in the modelling; presents a set of base case assumptions: presents the projections obtained using those assumptions: and investigates the sensitivity of the projections to changes in those assumptions. A final section sets out some conclusions.