We need an action plan that will make a positive difference to the lives of people with a learning disability and ensure that they get the right support, in the right place, at the right time. Be part of making it happen.
More than 12 years since the Winterbourne View scandal was exposed, and over 20 since Valuing People was published, there has been too little change to the lives of many children and adults with a learning disability and their families. Successive governments have published plans and reports that aim to improve the lives of people with a learning disability, to ensure that they can exercise their human rights to live in their own homes, in their local community, with the right support for them and the people who love them – but these plans haven’t delivered enough.
In September 2022, a group of families came together to start thinking about what would be needed in a strategic action plan that would put in place the right support to deliver good lives. Drawing on their lived experiences, and building on numerous reports and recommendations they identified the following key areas required in an action plan, co-produced by families, by people with a learning disability, and by people working throughout the system, in order to ‘get it right’:
Since then, people from all across the system – including clinicians, providers, advocates, commissioners, lawyers, representatives of the voluntary, community and social enterprise sector, and researchers – have come together to start co-producing a plan with family carers and people with a learning disability.
This is an ambitious plan. We know that the right support is person-centred; proactive and flexibly available, rather than only as a response to crisis (or sometimes not even then); holistic, taking into account all of the different parts of the system, joining them up, and working together to get things right; and flexible – able to change as and when needed. It needs to be co-produced by everyone with a stake in achieving this change – bringing together different experiences, expertise, perspectives and ideas to build a plan that works.
Beginning in September 2022, families, people with a learning disability, and people from across the different parts of the system started working together to capture what the plan needs to look like, what components are needed to make sure it is effective, and the principles that it needs to uphold. The people involved have drawn on their own experiences and expertise and on the work, plans, and good practice that have gone before.
You can read a booklet summarising the work that’s been done so far and the principles behind this plan here:
Click here to download the booklet
The next steps are to turn the principles, ideas, and actions that have been developed so far into a clear plan, with SMART (Specific, Measurable, Achievable, Realistic, Timebound) targets that can be delivered and embedded within the system, with a clear process for monitoring and accountability. This plan will be a live document, published on this website, that can be viewed, reviewed and updated as progress is made.
True co-production takes time, support and co-ordination – but it delivers good outcomes. We can’t wait any longer for “the system” to transform care, we have to join together and identify what is needed and demonstrate how it can be done.
This plan is co-produced, and brings together all of the different parts of the system to share knowledge, expertise and experience. It takes a lifelong approach – rather than having entirely separate services for children and adults, which often leads to the cliff-edge of transition, it emphasises the need for coordination, collaboration, and planning for the future. It focuses on early intervention, flexibility, and proactivity, rather than waiting for crisis to hit before support can be available.
Contributors believe that a lifelong, holistic plan that brings everyone together to be part of co-production and co-delivery will set out a clear, collective vision for what can be done, and how to do it.
This plan is a joint effort, with people with lived experience at the centre and with members from different backgrounds and professions working together. We need as many people to help as possible. There is still more work to be done on turning these principles and ideas into concrete, deliverable actions, and everyone who wants to be a part of co-producing and co-delivering this plan can be.
If you are a person with a learning disability, a family carer, a collective, organisation, or someone working elsewhere in the system, and you want to know more about this plan and how to get involved in developing and delivering it, please email actionplan@thecbf.org.uk
The Challenging Behaviour Foundation formed the Challenging Behaviour - National Strategy Group to break down the barriers to enable children and adults to get the right support to have a good life. Find out more about the CB-NSG on this webpage!
Read about how the CBF works with a range of people to influence national policy.
This page links to information, resources, policy documents and guides to aid dissemination of best practice.
