Adult Autism Strategy for England

1. Adult Autism Strategy for England

2. Outline • Background • I Exist • Autism Act • Development of the strategy • Other relevant background • Autism Strategy and first year delivery plan • What does it say • Key headlines • What is in each of the main chapters + priorities for the first year • What next?

3. How Did We Get Here?

4. Background: I Exist The I Exist campaign 63% of adults with autism do not have the support to meet their needs 60% of parents say that a lack of support has led to higher support needs in the long run 33% of adults with autism have experienced a severe mental health problems because of a lack of support 15% of adults with autism have a full-time, paid job May 2008 – Following the launch of I Exist, DH announce plans for an autism strategy to be developed

5. Background: Autism Act • End of 2008: Cheryl Gillan agreed to take forward the Autism Bill as a private member’s bill • Negotiations in Parliament led to Government support for the Bill • Autism Act passed in October 2009: • Puts a duty in legislation on the Government to produce a strategy by April 2010: so strategy development now underpinned by legislation • Puts a duty on Government to produce statutory guidance for health and social care bodies by December 2010 • The Act covers services for adults with autism and young people at transition

6. Background: Strategy Development • October 2008 - Elaine Hill appointed advisor on autism in DH to lead on development of the Strategy • Elaine established an “External Reference Group” (ERG) of stakeholders to develop a report on what should be included in the strategy • April 2009: DH launched a consultation on the strategy • Summer 2009: Regional events across the UK • September 2009: Consultation closes, ERG submits its final report • Strategy published on 3rd March 2010 • First year delivery plan published on 2nd April 2010 to coincide with autism awareness day

7. Other relevant background • NAO report found that early investment in services could save money in the long term • It recommended: • That the strategy demonstrate to Local Authorities and NHS organisations the costs and benefits of specialised diagnostic and support services • Training for GPs and community care assessors • Joint working between local authorities, NHS bodies and children’s services to inform planning and commissioning • http://www.nao.org.uk/publications/0809/autism.aspx • NICE is developing guidelines on “managing autism in adults” • DH has committed to developing commissioning guidance

8. Fulfilling and Rewarding Lives: The strategy for adults with autism in England 2010

9. What is in the strategy and delivery plan? • Five main chapters: • Increasing awareness and understanding of autism • Developing a clear, consistent pathway for diagnosis • Improving access for adults with autism to the services and support they need • Helping adults with autism into work • Enabling local partners to develop relevant services to meet need • Also sets out existing policies that apply to adults with autism

10. Some key headlines • Improved training of all frontline professionals in autism. • A recommendation to develop local autism teams • Actions for better planning and commissioning of services, including involving people with autism and their parents/carers in this process • Actions for improving access to diagnosis. • Leadership structures at national, regional and local levels to support delivery • Proposals for reviewing the strategy to make sure that it is working

11. Increasing awareness and understanding of autism • Autism to be included in the core training curricula for doctors, nurses and other clinicians • Autism training to be part of training for staff carrying out community care assessments • Autism training for staff in the criminal justice system • Autism awareness training for all working in the public sector • Programmes of work to support training at a local level • £500,000 to fund the development of training programmes to improve understanding of autism among frontline professionals in health and social care • Training in autism for all Disability Employment Advisors (DEAs)

12. Increasing awareness and understanding of autism The first year delivery plan sets out further details, including: • New training materials developed on autism for health and social care professionals will be available by December 2010 • All DEAs will get autism training by 1st January 2011. The deliver plan also sets out the training in autism available for others working in employment and benefits • Proposals for a public awareness raising programme by Autumn 2010 • There is also work being undertaken to roll-out awareness raising in the criminal justice sector.

13. Developing a clear, consistent pathway for diagnosis • “A diagnostic service should be easily accessible for all areas” • Local appointment of a lead professional to develop a local diagnostic and assessment services for adults with suspected autism • National Institute of Clinical Excellence (NICE) to develop model care pathways to form the foundation of local referral and care pathways • A diagnosis of autism will trigger a community care assessment and a carer’s assessment • Statutory guidance to set out the type of information that should be provided to adults with autism and their parents/carers once they have been diagnosed

14. Developing a clear, consistent pathway for diagnosis The first year delivery plan sets out further details, including: • A restating of the need for each local area to appoint a lead professional to develop diagnostic and assessment services for adults with autism. • All areas should have a clear pathway to diagnosis in every area by 2013. • NICE guidelines to help local areas design their diagnostic pathway to be published June 2012 • Work to highlight the fact that the strategy states that a diagnosis of autism should trigger a community care assessment and a carers assessment.

15. Improving access for adults with autism to the services and support they need • DH to develop guidance for mental health and learning disability services on “reasonable adjustments” for adults with autism • DWP to ensure JCP advisors aware of suitable adjustments that should be made • Personal budgets to be made available for all adults with autism who are FACS eligible • Local authorities to work with the third sector to support development of advocacy and buddying schemes • Travel training to be made available nationwide for all adults with autism • Work to ensure transition planning gives people with autism the right start in adult life • Clarification of types of support that students with autism can pay for with Disabled Students Allowance

16. Improving access for adults with autism to the services and support they need The first year delivery plan sets out further details, including: • Guidance on reasonable adjustments that should be made to better meet the needs of adults with autism by 1 January 2011 • Jobcentre Plus should also be making reasonable adjustments for its clients who have autism: contact centres within JCP are being made aware of some of the difficulties that adults with autism can face when trying to claim for benefits over the phone

17. Helping adults with autism into work • Training in autism for all Disability Employment Advisors (DEAs) • DWP to set out in delivery plan how JCP customer services and benefits processes address the issues highlighted by the consultation and the NAS’s “Don’t Write Me Off” campaign • Many of the measures in Valuing Employment Now are designed to meet people with autism even when they don’t have a learning disability • New actions and initiatives from Work, Recovery and Inclusion to be available to support adults with autism • Work to increase employer awareness

18. Helping adults with autism into work The first year delivery plan sets out further details, including: • Civil servants within Jobcentre Plus to meet to discuss how to address issues raised by the NAS’ Don't Write Me Off campaign • It also explains how existing programmes on getting people with a disability into work should apply to adults with autism.  • Review of Government campaigns promoting diversity at work with aim of including more autism examples

19. Enabling local partners to develop relevant services to meet need • Each local area to develop a local commissioning plan • JSNA core dataset to be updated to include autism • DH work with regional partners to develop regional delivery plans • Local authorities to appoint a lead with responsibility for autism • Recommendation for local planning groups • Recommendation for local autism teams • Involvement of adults with autism and parents/carers • DH to develop “protocol” on recording and sharing information • Capacity building around user led organisations • Homes and Communities Agency include autism in forthcoming guidance on housing standards

20. Enabling local partners to develop relevant services to meet need The first year delivery plan sets out further details, including: • Deputy Regional Directors to develop regional delivery plans by 1st January 2011 and regional action plans by 31st March 2011. • Clear role for people with autism and parents/carers to be involved in developing these plans • Examples of local autism partnership boards set out to help local areas set up their own • Role of local autism lead highlighted • Sample business cases for setting up local autism teams to be published by the end of the year • A protocol on information sharing between services, published by the end of the year • Local self assessment tool to be published by the end 2010 to assist local areas in checking how they are progressing

21. What happens next? • Summer 2010: Consultation on statutory guidance • By end of 2010: Publication of statutory guidance to cover: • (a) diagnosis • (b) the identification of adults with autism • (c) the assessment of the needs of adults with autism for relevant services • (d) transition • (e) other planning in relation to the provision of relevant services • (f) training • (g) local arrangements for leadership in relation to the provision of services • By end of 2010: Publication of delivery plan for years 2 and 3 • 1st April: First annual report on implementation • June 2012: NICE guidance published • 2013: Review of strategy

22. Key Messages and closing remarks

23. Questions?