UK – The life is harder for people with intellectual disability

To read on The Guardian website:

Note: In the UK, the term of ‘Learning disability’ is used instead of ‘Intellectual disability’.

As someone with learning disabilities, I believe we need a say in the services we use

I started Learning Disability England so we can take part in improving the services and support we depend on

 Gary Bourlet, founder of Learning Disability England, the first national group for learning disability self-advocacy. Photograph: Christian Sinibaldi for the Guardian

Gary Bourlet, founder of Learning Disability England, the first national group for learning disability self-advocacy. Photograph: Christian Sinibaldi for the Guardian

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.

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