A group launched last year to represent people with learning difficulties across England has been scrapped and replaced by a non-user-led organisation that will be partly controlled by service-providers.
People First England (PFE) was set up last year by Gary Bourlet, who founded Britain’s first People First self-advocacy organisation in London in 1984 and fellow disabled activist Kaliya Franklin.
They joined forces in a bid to set up the first national user-led organisation for people with learning difficulties to cover just England, which they hoped would develop into an umbrella organisation for self-advocacy groups across the country.
In the first few weeks of the project they raised nearly £30,000, but it later struggled to raise further funds and they have now been forced into a merger that will leave people with learning difficulties in a minority on the new organisation’s board.
At the time of its launch, concerns were raised by other self-advocacy campaigners that PFE’s plans to work closely with families, carers and groups not led by disabled people could eventually see it become a non-user-led organisation that would have more in common with service-provider charities like Mencap.
A year on, some disabled activists fear that those concerns have been born out.
PFE has now merged with the charity the Housing and Support Alliance – which had been supporting PFE – to create Learning Disability England (LDE), which was launched at the House of Lords this week.
Instead of LDE being run by disabled people, power will instead be shared between “people with learning disabilities, families and friends, and organisations”, with a nine-strong board having three family representatives, three people from disability organisations and three self-advocates.
LDE is likely to replace campaigning work previously done by the Learning Disability Alliance – which itself was made up of service-providers, the National Forum of People with Learning Disabilities and the National Valuing Families Forum – and the Learning Disability Coalition, which had a similar make-up to the alliance.
But concerns have been raised that LDE’s funders include a string of organisations that earn money by providing services to people with learning difficulties, including Care Management Group, Brandon Trust, Advance Housing and Support, United Response and MacIntyre.
Andrew Lee, director of policy and campaigns at People First Self-Advocacy, who raised concerns last year about PFE, said he was “very worried” about the new organisation and “not surprised that my concerns have actually become a reality”.
He said he feared that LDE would lead to the voices of people with learning difficulties being “sidelined”, while he was also concerned about the risk of “tokenism”.
He said: “Unless people with learning difficulties are in complete control of an organisation, then their voices will always be pushed aside.
“I am very worried that the voices of people with learning difficulties are being trampled on in such a way.
“Obviously the views of family members, although they are important, are not the actual views of people with learning difficulties.
“They will always be different because people with learning difficulties will be saying, ‘I want choice and control, I want to live on my own, I want to get married, I want to have children and have aspiration,’ but they are being told, ‘you can’t,’ or ‘you can, with conditions’.”
He said the creation of LDE highlighted the need for genuine, properly-funded self-advocacy organisations.
Lee said he heard only last week that another local People First organisation had lost its funding, which he said came “at the very time when we need a strong voice”.
LDE said that its immediate priorities would be to develop projects to support people with learning difficulties to speak to the media, and to be more involved in the political process, something PFE had focused on.
It will also bring together “experts in various fields to help make policy stronger and effective”, work with a “network of academics to strengthen the effect of research”, set up a “fighting fund” to “help people challenge prejudice and discrimination”, and provide members with advice and support.
Bourlet (pictured) told Disability News Service that there had not been enough funding to continue with PFE.
Asked about replacing a user-led organisation with one that was partly controlled by the big service-provider organisations, which make money by providing services to people with learning difficulties, he said: “We are stuck in a hard place and people have to understand that money does not grow on trees.
“They put the biggest amount of money in, but it doesn’t mean they will have the majority voting.”
He said that the new organisation was about “all coming together” and “strength in numbers”.
He said: “There are lots of good self-advocacy organisations and others saying the right things but it is easy to ignore because they are all doing it individually.
“A lot of these local groups have been too wrapped up in getting local funding from local authorities.”
He said there had been a mixed reaction to LDE from other self-advocates and self-advocacy groups.
Bourlet said: “Some self-advocacy groups think you shouldn’t mix with families and professionals because families and professionals sometimes speak for us. Many self-advocates liked the idea that we had strength in numbers.”
He said he hoped that PFE might be resurrected one day when there was more funding, and that they would look again at the idea in three years’ time.
Bourlet said earlier in a statement that the new organisation would be “steered by people, families and organisations”.
He said: “We are creating this now because for far too long services have been bad and self-advocates are tired of fighting a lone battle.
“By coming together we can fight for better changes in our lives.”
He added: “We are not equal in our society. If you have a learning disability, you’re more likely to die at a younger age than a non-disabled person.
“Learning Disability England will bring people together to fight all these bad things that are happening and to campaign for the rights of people with learning disabilities and their families”.
The disabled crossbench peer Baroness [Jane] Campbell spoke at the LDE launch event, and offered her support to the new organisation.
She said: “For too long, people with learning disabilities have been consistently let down, sometimes at great cost.
“The time is right for the voice of people with learning disabilities to be heard loud and clear.”
After DNS asked her afterwards about concerns with the change from PFE to LDE, she said she had been impressed by the number of people with learning difficulties with enthusiasm for self-advocacy at the LDE launch event.
But she said that most of what she knew about LDE was what she had learned at the launch, and she would now “have a good look” at the new organisation and how it was run.