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Support for people with learning difficulties in residential settings who develop dementia
- Author:
- JOSEPH ROWNTREE FOUNDATION
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2004
- Pagination:
- 4p.
- Place of publication:
- York
What happens when someone with learning difficulties develops dementia? This study explored the experience of 18 people with learning difficulties living in small-scale, community-based residential homes. It also looked at the knowledge and experience of service providers, staff, fellow residents and relatives. Lack of planning led to ad hoc arrangements that often failed to meet the needs of people with dementia, fellow residents and staff. Lack of coherent strategies and resources resulted in people being moved inappropriately to nursing homes for older people. When people did move to another setting, residential home staff continued to play a vital role in maintaining basic care for the individual. There was a lack of coherent, consistent practice in relation to diagnosis and follow-up care. Where baseline assessments were established there was a marked improvement in early diagnosis. The use of consistent, good quality, practice-based training was critical in determining the type of care given and the likelihood of someone remaining 'at home'. Staff often provided unpaid or underpaid support. They played down the increased complexity of individual care needs because they feared requesting additional help might result in the person being moved. Waking night staff were essential not only for dealing with night-time disturbances but also for providing one-to-one support. This also had a positive impact on fellow residents' ability to accept and cope with the person with dementia. In particular, staff in all settings struggled with pain management and helping people to eat well. Dementia-friendly built environments were rare. But in some cases staff had been imaginative and resourceful, demonstrating that such changes do not have to be expensive.
The importance and availability of peer support for people with learning difficulties accessing direct payments
- Author:
- JOSEPH ROWNTREE FOUNDATION
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2004
- Pagination:
- 4p.
- Place of publication:
- York
New regulations which came into force in 2003 in England (and similar measures in Wales in 2004) mean that local authorities do not just have the power to offer direct payments; they now have a duty to offer them to eligible people. In theory, this should mean far higher numbers of people receiving direct payments, including people with learning difficulties. But key to take-up of direct payments is the availability of effective support to access and manage them. There are very few independent direct payments support schemes run by and for people with learning difficulties. Most independent direct payments support is provided by existing disabled people's organisations or direct payments schemes set up for the purpose. There are some very good examples but most independent direct payments support schemes have limited or no involvement by people with learning difficulties. There are different views and expectations about what 'independent' support means. The quality of support is crucial, not just its independence from statutory services. Assumptions about consent and ability to manage direct payments can block people with learning difficulties from accessing support and these can be held equally by independent support schemes as by statutory services. Sometimes an individual with appropriate attitudes, information and experience, whether based in independent support agencies or within social services, can have more effect in enabling people with learning difficulties to access direct payments than an independent contract that is given to those with little knowledge or experience about including people with learning difficulties. Local issues and assumptions around funding, tendering and contracts have a big influence on whether people with learning difficulties are included in support schemes and whether contracts are given to groups of people with learning difficulties.