Changing Our Lives uses principled, evidence-based research to challenge inequality.
Working in partnership with universities, we have taken our Quality of Life approach and embedded it into research projects that focus on policies and practices that impact the lives of people with learning disabilities and autistic people.
Why are we stuck in hospital?
Changing Our Lives worked with the University of Birmingham on a two year research study (funded by the National Institute for Health and Care Research) to investigate why people with learning disabilities and autistic people spend so long in hospital.
Over 10 years have passed since Winterbourne View, the abuse scandal that led to the creation of the Transforming Care programme, an initiative which aims to improve care and services for these individuals, to reduce inappropriate admissions, as well as to minimise the length of stay for people in Assessment and Treatment Units and secure hospital settings.
Despite Transforming Care, numerous reports, additional funding, and some high-profile cases that have drawn national media attention to the issue, there remain over 2000 people with learning disabilities and autistic people in long-stay settings.
This research facilitated conversations with people in hospital settings, their families, the staff who support them, as well as commissioners and/or case managers from their local area, to try to understand what barriers are preventing them from leaving hospital and living an ordinary life in the community.
As part of the study, we worked with a reference group of people with learning disabilities, autistic people and family members (some of whom have lived experience of being in a hospital setting, or having a family member in such a setting) who helped to shape our approach.
At the same time, we worked alongside satirical artist Foka Wolf, and the Ikon art gallery, Birmingham, to inform an art installation in response to the research.
Resources
- ‘Why are we stuck in hospital?’ Policy guide
- ‘Why are we stuck in hospital?’ Easy Read guide for people and families
- ‘Why are we stuck in hospital?’ Training video
- ‘Why are we stuck in hospital?’ Accessible film
- ‘Why are we stuck in hospital?’ Barriers to people with a learning disability/autistic people leaving ‘long stay’ hospital: a mixed methods study (NIHR research journal)
200 Lives
Changing Our Lives worked with Manchester Metropolitan University’s Centre for Disability Research, London School of Economics, and the National Development Team for Inclusion to examine the quality and costs of supported living and residential care for 200 adults with learning disabilities aged 18-74. This work was funded by the National Institute for Health Research.
Councils spend nearly £3 billion every year on supported living and residential care for adults with learning disabilities.
The number of people needing this kind of support is growing, although many adults with learning disabilities living with their families would prefer to live independently. Despite the large amounts of public money being spent, we know very little about how good existing supported living and residential care services really are, and how much they should really cost.
The findings from our research will be used to provide insightful, up-to-date evidence on the quality and costs of supported living and residential care services for the individuals and organisations that can make good use of it.
These include: people with learning disabilities and their families; the government; commissioners of social care service; organisations that provide housing support for adults with learning disabilities; and the Care Quality Commission.
As an extension to the original 200 Lives project, we undertook Small Margins, which acknowledged factors such as racism and intersectionality underpinning the experience of people with learning disabilities, autistic people and their family members from minority ethnic communities. It explored issues relating to the support they receive, highlighted the importance of culturally competent services and support for people and families, and identified key learning for commissioners, support organisations, race related organisations and organisations that check the quality of care and support services.
