Plans to set up a new user-led organisation for people with learning difficulties in England have been described by an existing national group as “divisive” and “damaging” to the self-advocacy movement.
Disabled activists Gary Bourlet and Kaliya Franklin told last month how they were hoping to raise more than £50,000 to set up People First England (PFE) as a new umbrella organisation for self-advocacy groups.
They have already raised £30,000 from individuals and other organisations, but their plans have caused confusion among staff and members of People First (Self Advocacy) (PFSA).
PFSA, although based in London, is a national organisation with more than 100 members among self-advocacy groups across England, Wales, Scotland and Northern Ireland, and 150 individual members.
Andrew Lee, director of PFSA, insisted in a statement that his organisation already covered the main areas that PFE plans to address, such as providing an umbrella group for self-advocacy organisations, sharing ideas and information, and empowering people with learning difficulties.
Lee said: “These are not new ideas at all. This is work that People First (Self Advocacy) is already doing and has been doing for 27 years.
“It would seem that there has not been enough thought about how confusing and damaging re-inventing a wheel which is already moving could be to the self-advocacy movement.”
He said PFE’s plan appeared to be in “a very good cause” but that much of it sounded “naive”, with “little evidence of strategy”.
Lee said that the exclusion of People First (Self Advocacy) from this planning meant that decisions that were being made were based on “much less than the full picture”.
He said: “It would make sense to me that People First (Self Advocacy) should have been included from the beginning.”
Lee said PFSA was able to deal with information that only related to England, as well as covering UK-wide issues.
He added: “Any person with a learning difficulty or a self-advocacy group can become a member, to gain from People First’s support, experience and input into the big impact which we have at a number of levels.”
Lee said that PFSA had influenced national policy and local policy and practice, and had “worked at all levels of government in its own right and in partnership with other third sector organisations”.
The key pieces of government work it has influenced include the Valuing People white paper, the Mental Capacity Act, and the Improving the Life Chances of Disabled People report, while it provides advice and support to organisations all over the country.
It is currently working on an evidence-collection project set up in response to local and national cuts and reforms to support and benefits.
Lee said he was concerned that PFE’s plans to work closely with families, carers and groups not led by disabled people suggested that it could become a non-user-led organisation, which would mean there was a “false use of the People First name” and it would have more in common with charities like Mencap.
In a statement, Bourlet and Franklin refuted many of the PFSA claims.
They said: “We know of course there are many groups led by people with learning disabilities across the UK and we look forward to working with them and learning from them. But there has never been a People First which covers just England.”
They said that PFSA covered all of the UK and not just England, while the PFE idea had “received both general and financial support from a number of different organisations and individuals in the learning disability field”.
They added: “We believe that it is important to work with and include families, because living with a family is an ordinary part of life.
“Although it is vital for self-advocates to have choice and control, it is also important to include families to break down unwanted barriers.”
And they said that working with both user-led and non-user-led organisations would encourage “openness and a freedom of speech”.
They said there had been an “overwhelmingly positive response” to the launch of PFE, and that “working together as people with learning disabilities, people with physical disabilities and those who support us we will develop the strongest possible voice for us all”.
But Simone Aspis, a leading disabled activist and member of People First (Self Advocacy), said she was “very angry” at the PFE plans, which she said were “incredibly unhelpful”.
She said PFSA had done “an awful lot of sterling work”, and added: “Around the country it has led the way in ensuring people with learning difficulties enjoy the same rights that non-disabled people take for granted.
“I don’t think setting up something that is separate that does the same thing is helpful. It is divisive.
“As a member, I am deeply concerned that there is this project being set up, let’s be honest, in direct competition.”
6 February 2014