EQUALS: Ethical Quality Autistic-Led Social Care

About the project

Social care environments are not good enough for autistic people. Many services do not reach current standards of best practice and lots of healthy autistic people are living in hospitals.  This can happen when there isn’t good support in residential homes, and supported living. 

We think there is a better way to care for autistic people, based on a guide called the Independent Guide to Quality Care for Autistic People. This was created by the National Autistic Taskforce. The Taskforce was set-up by autistic people, to serve the needs of autistic people with a learning disability. According to their guide, social care services should focus less on managing behaviour, and think more about rights and relationships – with each other and with staff.  This gives more control to people who live in social care services, and helps staff feel empathy with autistic perspectives. 

In the planned project we will try out the ideas in the Guide, in real services. Autistic members of the Taskforce will work with autistic people living in social care services, and the staff who work there. The project will be supported by researchers who know about autism and social care. The research will happen in two services that provide residential or supported living services to autistic residents. Over a year and a half we will: 

• find things which are not working well
• create ways to fix those problems
• try those new ways of working, to see if they are successful.

We will repeat these steps again and again, to try to fix as many different things as possible. We will use the ideas in the Guide to help us spot what could be improved, and we will watch and talk to supported people and staff to find out what they think could be better.  We will involve staff and supported people by having meetings every month in the service, talking about what works and what doesn’t. We will measure how things are changing by: (i) visiting services to see what’s going on, (ii) talking to staff, supported people and their families, and (iii) looking at records kept by the service.

The project will be guided by an “advisory panel” which is a group of people including: autistic users of social care services; their parents/families; providers of those services, including frontline staff and managers; and commissioners of these services. Every few months, we will show them the latest news from the research and get their feedback. At the end of the project, we will have made a whole package of tools and materials to help make supported living and residential services better for autistic people, by following the NAT Guide.

Impact

Right now lots of services are interested in using the NAT Guide to shape how they offer care and support to autistic people. However it’s hard for them to know how to proceed – they need practical advice, tools and templates to help them understand what makes quality care “on the ground”.  We hope to generate materials such as implementation guidelines, policy and procedural templates, staff training and induction materials, and template resources for use in-service (e.g. care and support plans; incident record forms). In addition, we will co-create informational videos, infographics and easy-read summaries designed to introduce the EQUALS approach to supported people, families, staff and commissioners and summarise the findings of the research.

Primary Project Contact

Dr Lizzie Gale: e.gale@sussex.ac.uk 

Funder and Collaborators