The support among people with learning disabilities and professionals for a People First England seems to be strong – now it has to happen, says Gary Bourlet.
When I wrote a column for the March/April issue of Learning Disability Today making the case for a People First England, I never imagined that I would get the amount of responses I received – I have been overwhelmed by the support there is for the idea.
Since then, I have been sifting through all the emails, tweets and Facebook posts I have received on it. Below is a summary of some of the main themes that people who responded have said they would like to see in a People First England, as well as some of their concerns.
Firstly, People First England could provide a genuine collective and independent voice for people with a learning disability, helping the people who can speak for themselves to speak louder, and making sure those who cannot speak for themselves have their preferences heard.
But the most general goal should be to ensure that people with disabilities are given the best opportunity to advocate for themselves, in their personal lives, in their local areas and at a national level.
That People First England should promote and demand the genuine inclusion of people with learning disabilities at all levels of statutory services, including central government and the NHS, was also mentioned. The group could also campaign on a national level for learning disability issues and against things such as social care and benefit cuts, but also provide support to self-advocacy organisations on local issues.
People First England could also provide advice to self‑advocacy organisations and help, such as with fundraising, to ensure that they are financially secure and can plan for the future.
Another theme to emerge in the responses was that People First England could develop a national training programme or standard of training for people with learning disabilities to become self-advocates and deal with local authorities, clinical commissioning groups and such like.
People First England could also train professionals, carers and politicians to be more open and welcoming to self-advocacy.
The group could help to consult directly with people with learning disabilities to ask their views on national policies, and ensure their voice is heard by politicians and the public.
Having an umbrella organisation for all self-advocacy groups – not just those named People First – could be useful for providing information to people with learning disabilities, such as drawing up a map of local self-advocacy groups, including contact details, so they know where they can find help in their local area. It could also help to share ideas and best practice nationally and internationally.
It was also strongly felt that any People First England should be run and controlled by people with learning disabilities and maintain a voice independent of government or other organisations.
There were also some concerns voiced in the responses. For instance, there were worries about how People First England would be financed, and whether it might take money away from local groups, many of which are already struggling financially.
In addition, there were concerns as to whether local groups would support or join an umbrella organisation, and if they would have to follow certain rules.
Others said that the movement should include everyone on the autistic spectrum. Adults with Asperger’s syndrome and high-functioning autism are usually excluded simply because they do not have a learning disability. But that does not mean that they do not need advocates.
But while there are concerns, which will need to be addressed, in general there seems to be widespread support for a People First England. While many expressed an interest in helping to get it off the ground, making it happen will take time and there are other important questions that need to be considered.
For instance, how do we get people involved in setting up and developing People First England? How would it not have to rely on funding from local authorities, central government or grants but generate its own income? How would People First England help existing groups to keep going or re-launch groups that have folded?
These are big questions, and ones that I, and others, will look to address in the coming months. However, we should stick to thinking about what we want to do together initially, and
not get bogged down in the details of who and how yet.
For now, self-advocacy groups need to talk to each other and concentrate on working together better and sharing more information and best practice.
Gary Bourlet is a founder of the People First movement in the UK.
This column also appears in the newly-published July/August issue of Learning Disability Today. For more information on how to subscribe, click here.