The National Autism Strategy for Wales Hugh Morgan CEO Autism Cymru 2 nd May 2013 CNAP: BELFAST

Developing a national autism strategy Key Questions How will it be Led? Does it provide clearly 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?

Will it improve research ? Will a 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?

Just over 3m people live in Wales We 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?

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) 4 th 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 Expert Working Group set-up to collect evidence and to draft strategy Wide-ranging consultation on draft strategy. ASD Strategic Action Plan produced as a result. 28 th 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 WG commission an independent evaluation of the ASD Strategy for Wales (recommended in the March 2011 report)

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 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

WHAT HAS BEEN THE FINANCIAL COST TO DATE? £10.7 of Welsh Government ring-fenced funding for autism has been allocated since (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?

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

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)

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

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

Example 2. Mobile/Cell Phone App.

The App Daily Planner

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

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

Post diagnostic pack for Parents & Carers

Post-Diagnostic Pack for Families wins national award

Monitoring and Evaluation of the ASD Strategic Action Plan for Wales Monitoring National ASD Stakeholder Steering Group active between Local ASD Stakeholder Group x22 since 2008 Adults Task & Finish Group ( ; and ) 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

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’

CONCLUSION A LOT OF PRACTICAL IMPACT ‘ON THE GROUND’ FOR A PUBLIC INVESTMENT FOR JUST £34 PER FAMILY PER YEAR! Contact Details: