Clinical and Cost Evaluation of Intensive Support Teams (IST) for Adults With Intellectual Disabilities and Challenging Behaviour

Approximately 17% of adults with intellectual disabilities (ID also called learning disabilities in the UK; constitute about 1% of the population; living in the community present with serious challenging behaviour including aggression self-injury or other socially inappropriate behaviours. As many as 100,000 children and adults are estimated to be at risk of admission to inpatient care due to the presence of such behaviours if they are not successfully managed in the community. There are ongoing concerns that these individuals are subject to increased rates of hospitalisation, unnecessary long term use of psychotropic medication, poorer health, abuse and exclusion. Intensive Support Teams (ISTs) are specialist teams which have been advocated for many years as the right services to help people with intellectual disabilities (ID) and challenging behaviour stay in their local communities. They may be staffed by one or more professions, e.g. psychology, nursing, psychiatry, and usually deliver interventions such as positive behaviour support and accept people with ID who are in a crisis when challenging behaviour emerges or provide support when a person is admitted to a local inpatient facility. ISTs are recommended to provide high quality proactive and responsive care aimed at avoiding unnecessary admissions or reducing inpatient length of stay and supporting people in the community. However, there is little evidence to recommend a preferred IST model and there has not been any comprehensive attempt to describe IST outcomes. NHS Commissioners require clear information about what works in order to fund appropriate services. NG11 (8) reports the state of evidence thus: "It is widely recognised that locally accessible care settings could be beneficial and could reduce costs but there is no strong empirical evidence to support this".

Objectives: 1. To create a typology of IST currently operating in England; 2. To generate evidence on the effectiveness of different IST models which best support improved outcomes for adults with challenging behaviour; 3. To estimate the costs of different IST models and investigate cost effectiveness; 4. To understand how ISTs impact on the lives of adults with ID and challenging behaviour, their families and the local services; 5. To generate evidence to inform and support decision making on commissioning IST for adults with ID and challenging behaviour.

Methods: the proposed study has two phases: phase 1 (9 months) includes a national survey (England) of ISTs. Service managers of community ID teams (CIDT) will be approached to first identify whether they have such a service locally and then a piloted and refined survey will be carried out. Outputs will include mapping the distribution of ISTs, developing of IST models and a description of the key characteristics of these models. Phase 2 (27months) includes a mixed methods evaluation of up to 4 IST models. We will collect both patient level outcomes, e.g challenging behaviour, risk, hospitalisations, service use etc, at two assessment points (baseline and 9 months) and service level outcomes (referrer satisfaction, reach, referral numbers) over 9 months. Statistical analysis will compare outcomes across ISTs and identify which are most associated with positive outcomes (e.g. improvement in challenging behaviour). The costs of delivering the different models will be calculated and compared across all models. We shall collect qualitative data to understand the experiences and views of key stakeholders and the impact of the different models. We shall follow with a project report and a wide range of dissemination activities, e.g. publications, contacts with NHS England and policy makers, commissioners (CCGs), clinicians etc.

Main benefits: In line with NHS England (NHSE) guidance in managing people with ID locally and effectively, the proposed work will provide commissioners and clinicians with the evidence they need to deliver high quality care to an under-served population group. The project maps onto principles 7 and 8 of the plan outlined in Building the Right Support which describes the objectives of community ID services in England.