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Autistic UK Responds to the UK Autism Act 2009

  The passing of the Autism Bill into law today, whilst undoubtedly a positive development, is not the “great leap forward” that it has been characterised as being by many (for instance by the National Autistic Society).

Whilst Autistic UK recognises that it represents a significant acknowledgement by the government that autistic people have a wide variety of needs that are currently unmet by the statutory sector, it is nonetheless only the first step in an ongoing process.

Autistic UK laments the lack of meaningful involvement of autistic people in that process.

The Act now provides a statutory obligation for the proposed Adults with Autism Strategy on which the Department of Health has been taking the lead in producing since this time last year.

Under the Act the obligation is now to publish a Strategy by April 2010; the Department of Health has undertaken to publish a strategy by December 2009.

It remains to be seen what that Strategy might look like. The early indicators are not particularly encouraging.

The Act also places a legal obligation upon the Secretary of State to produce guidance on the implementation of the Strategy.

Autistic UK notes that the government has patently failed to abide by the United Nations Convention on the Rights of Persons with Disabilities (UN Disability Convention) which was ratified by the UK on June 8th this year.
Section 4.3 of the Convention states;

“In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations”.

No such involvement has taken place in regard to the drafting of this Act. There has been no significant involvement of either autism-specific user-led organisations (ULOs) or pan-disability ULOs.

Autistic UK will be seeking to ensure that meaningful involvement of autistic people and their representative organisations takes place during the final drafting of the Autism Strategy and the drafting of the Section 7 Guidance which will underpin it and which will underpin any future re-drafting of the Strategy.

Autistic UK argues that it is vital that the Strategy includes the establishment of structures and mechanisms which will enable autistic people and their representative organisations to play a full and meaningful role in the implementation of the Strategy at all levels including local, regional and national.

Autistic UK advocates the establishment of Autism Partnership Boards (modelled on the Learning Disability Partnership Boards (LDPBs)) as one such mechanism of involvement.

Autism Partnership Boards must be established in all local authority areas. These Partnership Boards will be responsible for those elements of government proposals which relate to services for autistic adults.

The Partnership Board will operate within the overall framework provided by Local Strategic Partnerships (LSPs).

Autism Partnership Boards should ensure that autistic people and carers are able to make a real contribution to the Board's work.

The Secretary of State should issue guidance making it the responsibility of the Chief Executive of every Local Authority to ensure that an Autism Partnership Board is in place.

Membership should include senior representatives from all relevant statutory bodies including Social Services, health bodies (Strategic Health Authorities, Primary Care Trusts (PCTs) and Mental Health Trusts), education, housing, community development, leisure, the employment service, the Connexions service, the police force and the probation service as well as independent service providers and the community and voluntary sector.

Representatives of autistic people and of carers of autistic people must be enabled to take part as full members.

The latest government guidance relating to LDPDs, “Good Learning Disability Partnership Boards: ‘Making it happen for everyone’”, published by the Department of Health on October 21st, 2009, states that;

“evidence has shown that the most successful Partnership Boards in securing better outcomes for people with learning disabilities are those which involve Directors of Adult Social Services and Chief Executives of PCTs and have robust and effective arrangements for involving people with learning disabilities and their family carers”

and that

“people with learning disabilities and family carers form at least 50% of the Board membership so that their voice is influential in decision making”.

Similar guidance must be issued in relation to Autism Partnership Boards.

The work of Autism Partnership Boards must include the implementation and the evaluation of the implementation of the Autism Strategy.

Autism Partnership Boards must also mirror LDPBs by each having a User Forum and a Carer Forum. There is a role for parent-carer led organisations (such as the NAS and local equivalents) in supporting the Carer Forums.

Support for User Forums ought to be by autism-specific user-led organisations.

There ought to be autism-specific equivalents of the Learning Disability Regional Forums and the National Forum for People with Learning Disabilities.

This autism-specific structure mirroring the LDPBs would enable local people to address local problems in partnership with local providers and commissioners.

The National Forum for People with Learning Disabilities works with the Department of Health’s Learning Disability Programme Board and is involved in the evaluation of the efficacy of the Valuing People initiative, feeding back to the Department of Health and other government departments. The Department of Health has a Mental Health Programme Board with a similar remit.

Autism is not a Learning Disability nor is it a Mental Health problem.

Consequently the Department of Health must immediately establish a Programme Board for Autism (and other neruo-developmental or “neurodiverse” conditions). This Board must be given the remit of working with the Autism Partnership Boards, their User and Carer Forums, the Regional Autism Forums, the National Autism Forum and the autism equivalent of the Valuing People Implementation Team to evaluate the implementation of the Autism Strategy.

The recently created post of Specialist Advisor on Autism is not sufficient.
The Department Of Health must establish an Autism Strategy Implementation Team mirroring the Valuing People Implementation Team (of which the Specialist Advisor on Autism would then be a member).

Autistic UK does not seek to deny that the learning disabled community has unmet needs which must be met. However, it is patently unfair that huge amounts of time, effort, money and expertise have been expended on improving the life chances of learning disabled people whilst the autistic population receives almost nothing.

There is not a significantly greater number of learning disabled people in the UK than there are autistic people. All we seek in the first instance is parity.

For the unmet needs of autistic people to begin to be met we need at least the level of involvement in the development of services with which the learning disabled community have been provided.

Autistic UK, October 22nd 2009

For the text of the forthcoming Autism Act, use the link in the Links section

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