Activists to protest over user-led exclusion from autism board


Disabled activists are to protest outside a government event over the exclusion of user-led groups from the body overseeing the implementation of the national adult autism strategy.

Members of the London Autistic Rights Movement (LARM) and the Autistic Rights Movement United Kingdom (ARM UK) are angry that no organisation led by people with autism has been included on the new strategy’s programme board.

They are now planning to protest outside a national meeting – organised by the Department of Health (DH) and the National Autistic Society (NAS) – for “senior leaders” in health and social care on the implementation of the strategy.

Care services minister Paul Burstow is set to launch the strategy’s crucial statutory guidance at the meeting.

Campaigners have been concerned about both the previous and present governments’ failures to work closely on the strategy with groups led by people with autism.

They say this is a potential breach of article four of the UN Convention on the Rights of Persons with Disabilities, which says governments should actively involve “representative organizations” of disabled people when making decisions about disability issues.

Russell Stronach, co-chair of ARM UK, said: “It is fundamentally wrong. There has been no spirit of co-production.”

And Roderick Cobley, chair of LARM, said the programme board had a “key” role in the strategy, and added: “Their attitude is that we are not important.”

He said the strategy was a “missed opportunity to really tackle the exclusion and discrimination autistic people face in society”.

“The strategy as it stands fails autistic people, fails their families and fails professionals who want to know how to help autistic people.”

In March, ARM UK heavily criticised the autism strategy – when it was published by the previous government – for its failure to demand real change from councils and health trusts, its “weak” language and “derisory” funding.

No-one from DH was available to comment.

A spokeswoman for NAS, which is not user-led, said: “Our focus is really on the publication of the statutory guidance and making sure that that is being listened to by local authorities.”

She said they were glad there were people with autism and parents of people with autism on the programme board.

But she declined to comment when asked whether there should have been a user-led group represented on the board.

The protest is set to take place from 9am on Friday 17 December, outside the Wellcome Collection Conference Centre, 183 Euston Road, London NW1 2BE.

For more information about the protest, email:

9 December 2010


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