The National Autism Strategy for Wales 2008-2018

1. The National Autism Strategy for Wales 2008-2018 Hugh Morgan CEO Autism Cymru 2ndMay 2013 CNAP: BELFAST

2. Developing a national autism strategyKey Questions • How will it be Led? Does it provideclearly defined leadership at national and local levels? • How will it be staffed? Does it create a staffing infrastructure for autism throughout the nation? • How will it engage? Does it engage stakeholders ie the autism community in the planning, delivery, monitoring and evaluation of local services and publish local autism action plans? • Will it improve identification and diagnosis? Does it lead to a coordinated national approach to diagnosis and to early intervention and post diagnostic support for children and adults and their families?

3. Will it improve research? Willa national research agenda/centre be established which can underpin policy/strategy development? • Will it increase awareness of autism? In everyday life and throughout the population • Will it measure impact? Does it from the start monitor, measure and evaluate progress and evolve according to findings? • Is there sustainable funding to support delivery of the strategy?

4. Just over 3m people live in WalesWe will look at….. • How the Welsh Government ASD Strategy came about • Leadership and Coordination since 2008 • What has been the financial cost? • What has been achieved? • How are we evaluating the Strategy?

5. How The Welsh ASD Strategy Came About • 2001/2 Autism Cymru created the concept of a national autism strategy and proposed this to Officials and Ministers in the Welsh Government (WG) • 4th Dec 2002, Ministers announced the development of a national all-age autism strategy to be developed in partnership with Autism Cymru. The first in the world. • 2003 Expert Working Group set-up to collect evidence and to draft strategy • 2007. Wide-ranging consultation on draft strategy. ASD Strategic Action Plan produced as a result. • 28th April,2008. Implementation launch. Autism Cymru’s CEO seconded to WG to ‘drive forward implementation during the first 3yrs’ • March 2011 WG evaluation report upon impact made of the Foundation Phase published • November 2012 Public Consultation on ASD Strategic Action Plan. 3 events across Wales. To inform future funding priorities • October 2013 – Strategy Refresh to be published • 2013-14 WG commission an independent evaluation of the ASD Strategy for Wales (recommended in the March 2011 report)

6. Leadership, Coordination & Engagement AT NATIONAL LEVEL Welsh Government Minister with specific responsibility for autism (08-present) National ASD Implementation Manager (08-11) Expert Advisor for Autism (11-12) National Coordinator for the Local ASD Leads and Wales ASD learning and Improvement Network (11-present www.ASDinfoWales.co.uk) AT LOCAL LEVEL (NB: There are 22 Local Authorities in Wales) 22 Local Authority ASD Leads 22 Local Stakeholder Groups 22 Local ASD Action Plans

7. WHAT HAS BEEN THE FINANCIAL COST TO DATE? £10.7 of Welsh Government ring-fenced funding for autism has been allocated since 2008. (ie mean of £2.14m per year) Of this over 90% has gone directly to Education, Health& Social Services Remainder into research/project development work including those operated in the academic and voluntary sectors. This funding equates to just £34 per year for every family with autism living in Wales today. So what has this investment bought?

8. Achievements: Some Highlights 1. INFRASTRUCTURE • A National & Local ASD infrastructure within the statutory sector • Coordinated Stakeholder engagement in planning processes at local and national levels 2. DIAGNOSIS & POST DIAGNOSTIC SUPPORT • “The All-Wales Assessment/Diagnosis and Pre/Post Diagnostic Counselling Network for Adults with ASD” • “All-Wales diagnostic web-based forum for children’s diagnosis 2012” in Wales Autism Research Centre

9. RESEARCH Partnership between Autism Cymru/Autistica/Welsh Government and Cardiff University has led to: • The UK’s first named Professorial Chair in Autism Research (Cardiff University) appt 2009 (Professor Sue Leekam) • The Wales Autism Research Centre launched 2010 (Cardiff University) • Increased research funding into welsh autism research (in addition to within Wales funding) • Autism Research/Policy/Practice ‘Hub’ (funded jointly by WG and ESRC)

10. ADULTS • Post Diagnostic Support : Regional Community & Monitoring Support Schemes for Adults with Asperger syndrome (commenced 2011) • Employment: The Wales Autism Employment Ambassador (partnership with IoD) appt Dec 2010 • Commissioned research into the needs of older people with ASD published 2010 • Further Developments: Mental Health; Criminal Justice System; Further and Higher Education; Old Age; use of mobile phone apps

11. Example 1. The Wales Autism Employment Ambassador • Robert Lloyd Griffiths • Director of the Institute of Directors for Wales • Employer’s Autism Charter • Raising the profile of people with ASD in large and smaller companies in Wales • Extolling the benefits to companies of employing people with autism

12. Example 2. Mobile/Cell Phone App.

13. The App Daily Planner

18. TARGETED AWARENESS RAISING • Residential & Day CareServices • Advocacy • Housing Management services • Homelessness Services • Building Design • Spiritual needs and ASD • Sport & Leisure Providers • Older persons care services • Opticians, dentists GPs and Primary Healthcare Services Early Years; Primary Schools Secondary schools, Further, Higher Ed Family Support Practitioners Families Criminal Justice System Employers

21. 6. Development/Pilot Projects • No less than 43 New Autism Projects developed in Wales since 2009 resulting from funding allocated for collaborative pilot project work. Range includes : • Local play and after school schemes • Post-diagnostic packs for families • On-line social networks for families & similar for people with autism themselves • Autism awareness mandatory training for all 6,000 staff working in the Welsh Ambulance Services • All four Police forces receive training and the Autism Attention. Delivered by Autism Cymru

24. Post diagnostic pack for Parents & Carers

25. Post-Diagnostic Pack for Families wins national award

26. Monitoring and Evaluation of the ASD Strategic Action Plan for Wales Monitoring • National ASD Stakeholder Steering Group active between 2008-11 • Local ASD Stakeholder Group x22 since 2008 • Adults Task & Finish Group (2009-10; and 2010-11) • Monitoring and Steering Group for Wales Autism Employment Ambassador (2010-present) Evaluating • Baseline Survey of LAs undertaken 2009; reassessed in 2011 • Questionnaires of LAs; LHBs; Stakeholder Groups undertaken 2010/11 • Publication in March 2011 of Impact Made by the ASD Strategy during Foundation Phase • Public consultation x3 on ASD Strategy October 2012 leading to refresh • Independent evaluation of ASD Strategy taking place during 13/14

27. Summary of the impact in first 5 years? • Seen a major national cultural shift in the leadership, commissioning, design and delivery of services across the age-range and spectrum of autism • A national and local infrastructure for autism • Clear links for families and individuals with ASD • Demonstrable increase in wider awareness of autism – especially adults • Progressively improving diagnostic facilities for children and adults • Many collaborative and creative projects • Monitoring and evaluation processes in place • A national research centre for autism and autism research/policy/practice ‘hub’

28. CONCLUSION • A LOT OF PRACTICAL IMPACT ‘ON THE GROUND’ FOR A PUBLIC INVESTMENT FOR JUST £34 PER FAMILY PER YEAR! Contact Details: hugh@autismcymru.org