User involvement on autism board is ‘woefully inadequate’


Campaigners have criticised plans to appoint just one person with autism to a high-level board set up to monitor progress on the government’s new national strategy on adults with autism.

The Department of Health (DH) has already appointed 21 people to the programme board, most of whom are from government departments although there is also a handful of academics and representatives of social care quangos, local government and the voluntary sector.

This week, the government published a plan describing how it intends to make progress on the strategy over the next year. It says there will be an “open recruitment process” to appoint one adult with autism and one representative of carers to the board.

The delivery plan also says there will be progress this year on: delivering autism awareness training for frontline public sector workers; developing a new awareness-raising campaign to tackle stigma; improving access to services and support; helping adults with autism into work; and developing regional delivery plans.

But Russell Stronach, co-chair of the Autistic Rights Movement UK (ARM UK), said that although “bits and pieces” of the delivery plan were positive, there was still the same lack of detail that ARM UK criticised in the strategy itself.

He said that appointing just one person with autism to the board was “woefully inadequate”, as people with autism had such a wide breadth of experiences.

He said people with autism must also be able to monitor regional progress on the strategy, as with the learning disability partnership boards set up through the learning difficulties white paper Valuing People.

Stronach said: “Who is going to be monitoring it independently? That should be us, users and carers, but the mechanisms aren’t there.”

ARM UK has already criticised the weak language in the strategy and “derisory” funding of £500,000.

The strategy aims to “make existing policies work better” for adults with autism, with the emphasis on avoiding “additional statutory requirements or financial burdens” on public services and business.

A DH spokeswoman said the strategy was developed “using the core principles of inclusivity and co-production, with extensive public consultation” and “sought the views of adults with autism themselves, their families and informal carers”.

She said the “careful selection” of board members ensured the DH would have “access to the right knowledge and expertise to provide direction and governance for the strategy”.

She added: “At both regional and local levels, we will encourage processes to be put in place to ensure that the views of adults with autism and their carers are sought and taken into account in the development of services locally.”

And she said further detail would follow through new statutory guidance and a three-year delivery plan by the end of 2010.

7 April 2010