This week sees the launch of Learning Disability England, a new organisation that aims to strengthen the voice of people with learning disabilities in politics, policy-making and service provision. People with learning disabilities and their families will be directly involved in how the new organisation is run and what it decides to do.
Part of the reason for launching the organisation now is that services and support for people with learning disabilities and their families are in a terrible state. The implementation of the 2014 Care Act is failing, with some people experiencing a reduction in their quality of life and local authorities not providing good-quality information on people’s rights under the act.
In addition hate crime is increasing. Social care funding and support for disabled people is being cut because local authorities cannot afford to pay for them; and there are lots of changes to state benefits that are making life harder for people with learning disabilities (employment support allowance, for example, and the changeover from disability living allowance to the personal independence payment).
Some of the services people with learning disabilities use are really good, and support them to become more independent, such as the Ridgeway supported living services in Romford, Essex, or the KeyRing model of community support. But many are not good enough – sometimes because there aren’t enough staff or enough money to make sure they run well. But part of the reason is that people with learning disabilities are not involved in the design of services. You need the input of those with learning disabilities to plan and develop services that are fit for the 21st century.
I would like to see service commissioners employ people with learning disabilities in these development roles, working alongside non-disabled people. That’s one way to be sure learning disabled people are really involved.
Then there is a better chance the service you’re developing will meet the needs of the people who are going to use it; and people are more likely to want to use it if they know other learning disabled people have helped to create it.
Many disabled people rely on services funded by taxpayers to live independently. It’s important that these are not just basic services that mean we survive; we want to be part of the communities we live in and have a social life. We’d like the opportunity to have a job, for example, and the right to pay our own taxes.
Public services have a role here. All services are supposed to have “due regard” to supporting the needs of disabled people. Sometimes this is really simple. Next week, I will be voting in the EU referendum, and I am encouraging others to do the same. But I wonder how many staff and volunteers at polling stations know they are allowed to help someone with a learning disability to vote – for example, by showing them how to fill in their ballot paper.
Other ways commissioners and service providers can support people with learning disabilities include ensuring they have access to advocacy services, which councils must fund under the Care Act, finding ways to support self-advocates or putting information into an easy read format to make it more accessible.
Sometimes it’s more complicated than that. If you have a learning disability, you’re likely to die at a younger age than a non-disabled person. This is partly because of poor health and social care services. In 2016, our society should be doing much better. There are still thousands of people in assessment and treatment units even though the government said in 2011 that it would shut all ATUs by 2014 after the abuse scandal exposed five years ago at Winterbourne View. Society seems unwilling to tackle the problem properly.
Most people with learning disabilities are not in ATUs. But the fact that these still exist is worrying, because it says something about the way our society views learning disabled people. And ATUs are very expensive to run. That money would be better spent providing housing and well-trained staff to allow people with learning disabilities to be properly supported to live in the community.
Gary Bourlet is a co-founder of Learning Disability England. He was supported to write this article