Title: Evaluating the quality and costs of supported living and residential care for adults with learning disabilities
Funder: Department of Health and Social Care

Abstract: Research question: What are the quality and costs of residential care and supported living services for working age adults with learning disabilities? Background: &pound;2.8 billion of social care spending in England in 2016/17, a substantial proportion of the total social care budget, funded residential care or supported living services for over 50,000 working age adults with learning disabilities. Despite this investment, and despite persistent concerns about value for money, there is no up-to-date, comprehensive evidence about the quality and costs of current services to inform commissioners, service providers, or self-advocates and family members. Aims and objectives: The research will address the following objectives: To compare the quality and costs of supported living and residential care, particularly the extent to which they are distinct support models in terms of service quality and quality of life. To understand which factors (eg. costs, resources, provider organisation, how many people share a home, service practices, people s needs, the extent to which people s rights are respected) are associated with people s quality of life in supported living and residential care. To understand different perspectives (from quantitative indicators collected from people with learning disabilities and proxy respondents, quality checking, and a survey of family members) on the quality of supported living and residential care. To refine and produce a self-assessment tool for service providers to monitor their own services. Methods: The project is a cross-sectional study, collecting information concerning 100 working age adults with learning disabilities in residential care and 100 people in supported living in England, from an estimated 50-60 sites across 10-15 service provider organisations located mainly across North West England, South West England and the West Midlands. Services and participants will be purposively sampled within each service model (residential care and supported living) to represent a range of: participant needs, ages and genders; and service organisations, locations and sizes. The following data will be collected, analysed and triangulated: Comprehensive service and support costs The characteristics, resources, practices and quality of services For 20 sites, service quality as assessed by teams led by people with learning disabilities (Quality Checking) The characteristics and needs, and quality of life of people living in services The experiences of family members Data will be largely quantitative, with some qualitative elements concerning the experiences of people with learning disabilities and family members. Timelines for delivery: The proposed project will run from 1st April 2019 to 31st December 2020 (21 months). Participating organisations and sites will be recruited by 31st December 2019, and all data will be collected by 31st August 2020. Anticipated impact and dissemination: Dissemination of project findings will be through diverse means, including briefing summaries for different stakeholders (including easy-read), a short film, seminars and webinars, social media, and peer-reviewed outputs. The anticipated impact is to inform the behaviour of commissioners (to commission evidence-based, value for money services) and service providers (to deliver high quality services), and to provide information for self-advocates and family members to effective lobby for high quality services.

Lay abstract: Nearly &pound;3 billion a year is spent by councils on supported living and residential care for adults with learning disabilities. The number of people needing such support is growing and 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 supported living/residential care services are, and how much they really cost. It is 20 years since there was large-scale research about the costs and quality of housing and support for adults with learning disabilities; since then much has changed. Supported living should give people more rights and control over their lives, although we don t know if people s lives are any different to those people living in residential care. Some councils are talking about moving people with learning disabilities from small supported living settings back to residential care thinking this will save money. There is no evidence if this is true or not. The aim of this research is to examine the quality and costs of supported living and residential care for 200 adults with learning disabilities aged 18-64 years. Alongside information on costs, we will collect information about the supported living and residential care services themselves, how they operate, and information about the health, wellbeing, exercise of human rights, and lives of adults living in them. Quality Checkers are people with experience of using services themselves and who are paid to measure how good services are. The user-led organisation Changing Our Lives, will do detailed Quality Checker reviews of services for 20 people, and we will survey family members where possible. People with learning disabilities and family carers would be involved in this work in several ways: one co-applicant is a self-advocate who will attend steering group meetings as paid members of an advisory group, to help us make sure we are collecting the right information in making a film about the research to invite people to participate and a film about the main messages from the project as Quality Checkers &ndash; in this role they would be collecting and analysing data for the study in thinking about how we share the findings, particularly in relation to people with learning disabilities and family carers We hope to use this information to get good, up-to-date evidence on the quality and costs of supported living and residential care services to people who can make good use of it, including the government, people who commission social care services, organisations who provide housing support for adults with learning disabilities, self-advocacy groups and family groups, and the Care Quality Commission. We will also develop a self-assessment tool for providers to monitor their own service quality.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE