Evaluating the quality and costs of supported living and residential care for adults with learning disabilities (#200lives)

A research project funded by the National Institute for Health Research

COVID-19 UPDATE. The safety of potential participants in this project and those who support them comes first. Because of this, we have temporarily suspended recruitment to this project until it is safe for everyone to take part. If you are an organisation interested in taking part when recruitment becomes possible, please don’t hesitate to get in contact with us using the email address at the end of this webpage. Thank you, and stay safe. Chris, Anna, Siraaj, Lucy, Eva-Maria, Francesca, Lauren and Ewa.

Who we are

Lancaster University, National Development Team for Inclusion, London School of Economics and Changing Our Lives have been funded by the National Institute for Health Research (www.nihr.ac.uk/news/nihr-research-for-patient-benefit-funds-25m-of-new-social-care-research-and-announces-annual-social-care-funding-calls/21751 ) to evaluate the quality and costs of supported living and residential care for adults with learning disabilities in England. This project runs from November 2019 to July 2021.

What we will do

Nearly £3 billion a year is spent by English councils on supported living and residential care for adults with learning disabilities. However, up-to-date evidence is lacking about what makes good housing support for adults with learning disabilities, and what costs are associated with good housing support.

We will collect information about the costs of housing support services, how housing support services operate, the health, wellbeing and lifestyles of adults with learning disabilities, and the views of family members. We will also do detailed Quality Checker Quality of Life reviews for 10 supported living services and 10 residential care services. We will gain formal research ethics approval for this project before any information is collected.

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, groups of people with learning disabilities, family groups, and the Care Quality Commission.

Who we are looking for

We are looking for organisations providing supported living and/or residential care for adults with learning disabilities in England, and people they are supporting, to take part in this project. For practical reasons we are mainly looking for people living across the North West, South West and West Midlands, although we can go further afield for a limited number of participants.

We are hoping to get information from a range of people (for example covering different genders, ethnicities, ages, and support needs) being supported by large or small organisations, living in cities, towns and villages. We will be looking to recruit people aged between 18 and 64 years old, who have lived in their current home for more than 6 months.

We think that to get information from 100 people in supported living and 100 people in residential care (#200lives) we will need help from about 10-15 provider organisations, with up to 20 people per organisation taking part, involving a total of 50-60 places where people live.

What information do we want to collect?

For organisations interested in taking part, we will talk through in more detail what information we are looking to collect, who we want to collect it from, and how we propose to collect the information. Broadly, we want to collect the following information:

  • Comprehensive service and support costs (including the provider organisation and others providing support)
  • How services are organised, what they do and how high quality they are
  • Quality Checking reports on 20 places where people live
  • Information from the people taking part about their quality of life
  • The experiences of family members of people taking part (through a short survey)

What are the benefits?

We believe that it is useful for providers to have a better understanding of what factors in their services help lead to good outcomes for individuals. This study will provide evidence about this. At the end of the project, organisations with at least 15 participants will receive a brief confidential report benchmarking summary information about their organisation compared to anonymised collective summary information from the project as a whole. Changing Our Lives will also undertake detailed Quality of Life reviews of some of the services that take part. So, 20 participating services will get a full Quality of Life review report for free. The reviews are led by disabled people who are experienced reviewers, in conjunction with a Development Officer.

How do I sign up?

If your organisation is interested in taking part, please contact Ewa Woodward (NDTi), to arrange a conversation, on ewa.woodward@ndti.org.uk or call 01225 789135. We anticipate starting visits to participating services in spring 2020.