Exploring the implementation of new autistic-led standards in residential and supported living for autistic adults
This project is looking at how to make care better for autistic adults, especially those in care homes or supported living. Many autistic people don't get the right support, sometimes leading to unnecessary hospital stays. A group of autistic people called the National Autistic Taskforce created a guide with ideas for better care. This project will try out these ideas in two care services over two years. We'll work with autistic residents, their families, and staff to find problems and test solutions, making sure autistic people have more say in their lives and how they are supported. The goal is to create new tools to help care services everywhere provide much better support for autistic people.
At a glance
What is this study about?
Imagine a world where autistic adults always get the best possible care and support, especially if they live in a care home or supported living. Sadly, this isn't always the case right now. Sometimes, autistic people are in hospitals even when they don't need to be, simply because the care services they live in don't understand how to support them effectively. This project wants to change that. It's built around a special guide called 'The Independent Guide to Quality Care for Autistic People', which was written by a group of autistic people themselves, called the National Autistic Taskforce (NAT).
The NAT believes that autistic people have rights and should have more control over their own lives and the support they receive. The guide suggests that staff in care services should listen to autistic people, understand their feelings, and respect their choices, rather than just focusing on their behaviour. This project will put these ideas into action in two different care services. Over two years, autistic people from the NAT, along with researchers, will work closely with autistic residents and staff in these services.
The main idea is to find out what's not working well, come up with solutions, and then try those new ways of working. This will happen in several cycles, like a continuous improvement process. Everyone involved – autistic residents, their families, and staff – will share their thoughts and experiences. We'll watch, listen, and talk to people to see if the changes make a real difference, aiming to create better living situations and develop new tools to help all care services give autistic adults the high-quality, person-centred support they deserve.
Key takeaways
- This project aims to improve care for autistic adults.
- It uses a guide created by autistic people.
- Autistic residents, families, and staff can participate.
- The goal is more control and better support for autistic adults.
- The project runs for two years and makes no medical recommendations.
Who may be eligible?
This project is for people aged 18 or over. You might be able to take part if you are an autistic adult currently living in one of the two specific residential or supported living services involved in this study. This includes autistic people who might not use spoken words, have a learning disability, or need a lot of support with everyday tasks.
Staff who work at these two care services, including support workers, team leaders, and managers, can also take part. Additionally, if you are a family member or a close friend who regularly visits or is involved in the life of an autistic adult living in one of these services, you could also participate.
Unfortunately, if you don't fit into these groups – for example, if you're not an autistic resident, a staff member, or a close family/friend at the specified services – you won't be able to join. Also, people with a direct oversight role for the project, like members of the steering committee, won't be involved in the day-to-day research to avoid any conflicts of interest.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you 18 years old or older?
- Are you an autistic adult living in one of the participating care services?
- Do you work as staff at one of the participating care services?
- Are you a close family member or friend of an autistic person in one of these services?
What does participation involve?
If you decide to take part in this project, you will be involved in helping to improve care for autistic adults. For autistic residents and staff, this might involve taking part in monthly meetings with researchers and other participants. These meetings will be a chance to talk about what's working well in the care service and what could be better, based on new ideas from the 'Guide to Quality Care'. The project will run for two years. During this time, researchers will also visit the care services, listen to what autistic residents, families, and staff say, and look at notes kept by staff to see how things are changing. There are no medications involved. Family members and close friends might share their experiences and thoughts.
Potential risks and benefits
Locations (1)
- Anonymised for the protection of participants, as these are small specialist services and naming them could easily make individuals identifiableUnverifiedAnonymised, England
Common questions
What is the main goal of this project?
To make care better for autistic adults in residential and supported living by testing a new autism-led guide.
Who wrote the guide being tested?
It was written by autistic people themselves, under the National Autistic Taskforce.
How long will the project last?
The project will take two years to complete.
Will I have to take any medicine?
No, this project is not about medicines; it's about improving care practices.
Can I stop taking part if I change my mind?
Yes, you can leave the project at any time without needing to give a reason.
How to find out more
Sue Fletcher-Watson
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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