Community services for people with intellectual disabilities are very varied, particularly in their ability to support people with LD and ‘challenging’ behaviours’. Government policy has encouraged locally-based support for people with LDs, including those whose behaviour ‘challenges’ services. Nevertheless, people with LDs continue to be sent to out of area placements, some of which are of poor quality, or even abusive. The recent scandal at Winterbourne View has highlighted concerns that some people with LDs are not being offered effective assessment, treatment or support in the community.
Our aim is to carry out an in-depth examination of a single service. The findings will inform the commissioning, design, and delivery of specialist community LD services, both locally and nationally, enabling these services to provide more effective support so that more men and women with LD and complex needs can lead lives that are of high quality, close to those who care about them.
Our projects include:
a) 2009-2011: engineering design methodologies and qualitative methods were used to ‘map’ the geographically dispersed specialist LD service and its organisational structures. We identified the relationships and knowledge flows across the service. We explored the views of stakeholders about the role and purpose of the service;
b) 2009-2010: a questionnaire study investigated team members’ experiences and perceptions of personal, functional and organisational relationships across the service (the TEAMS study);
c) 2010-2012: a case-notes study analysed the reasons for referral, and characteristics of those referred to the five community teams over three months (the START study); and
d) 2012-2013, the ‘service user journeys and stakeholder experiences’ (SUJASE) is a mixed-methods study of teams’ work with service users with complex needs. We will be reviewing the impact of this work and assessing its costs through a health economic evaluation.
Our findings have highlighted the complexity of multi-disciplinary and multi-agency community teams for people with IDs, and how important it is for those in the service to work together. Even in an established and well-recognised service, we found there was no agreed vision of the role and purpose of the service, and a mismatch between service users’ wishes of the service and service provision. There was some uncertainty about how best to address the needs of those who did not fully meet the criteria for entitlement to the service. Given how dependent all individuals with ID are on some level of social support, the nature and quality o f local support was critical. These findings provide the context for understanding the failures of community services that have been highlighted by the abuse at Winterbourne View and other scandals.
To bring about change locally and nationally, we have carried out the following:
- At a local level: we are supporting LDP team members and managers to respond to the research findings.
- At a regional level: we contributed evidence to a recent consultation on LD services in the region. Tony Holland now sits on the newly established Health and Wellbeing Board for LD.
- At a national level: we hosted high level meetings with Mencap, including meetings with two service users with complex needs, both of whom had been detained in secure hospitals and are now living in the community. Tony Holland has been invited to be a member of the advisory group established by the Department of Health to lead its review of services following the abuse at Winterbourne View.
This is the first such in-depth study of community services for adults with IDs we know of anywhere in the world. The findings have significance nationally and internationally, and implications for other long-term conditions, in particular where there are complex health needs and an interface with social care.
Our main partners in this project are the Cambridgeshire Learning Disabilities Partnership, Cambridgeshire County Council, and Cambridgeshire and Peterborough Foundation Trust, but we are also working closely with Cambridge University’s Engineering Design Centre, Institute of Public Health, and Judge Business School, and Professor Gyles Glover, Co-Director of the Improving Health & Lives: Learning Disabilities Public Health Observatory.
We have tried to break down traditional barriers between academic researchers and clinical (NHS) and care management (local authority) practitioners by employing Practitioner Researchers, embedded in the service, to support the engagement of staff from different disciplines and backgrounds in the research process. To help us in the design of this project, we set up an advisory group of service users with intellectual disabilities (the SUAG) and the work of the SUAG has been presented at PPI workshops locally and nationally.
View the SUAG newsletter for more information.