AUTISTIC SPECTRUM DISORDER REFERENCE GROUP
Note of meeting held on 23 April 2007, in Meridian Court, Glasgow
Present :
Ken Aitken, Action Against Autism
John Cameron, Autism Resource Centre, Glasgow
Joanna Daly, National Autistic Society
Paul Dickinson, Highland NHS PC Trust
Aline-Wendy Dunlop, National Centre for Autism Studies
Carol Evans, National Autistic Society
Bette Francis, Scottish Executive (Chair)
Susan Gilroy, Scottish Executive
Kirsten Haughey, Scottish Borders Council
Richard Ibbotson, Autism Initiatives
Alison Leask, Autism Argyll
Stella Macdonald, Consultant and service user
Tommy MacKay, Psychology Consultancy Services
Jenny Pickthall, Scottish Executive
Val Murray, Yorkhill NHS Trust
Charlene Tait, National Centre for Autism Studies
Marion Thompson, Scottish Executive
Apologies
Jane Neil-Maclachlan, Iain McClure, Jane Hook, Wendy Johnston, Carolyn Brown, John McDonald, Val Sellars and Jean Maclellan.
1. Introduction
Bette thanked the group for their patience and understanding while the Adult Support and Protection Unit has worked around pressures from the work on the Adult Support and Protection Bill. The next two concluding meetings of the group will focus on updates/ evaluations from the projects that have been funded by the group and on the guidance for commissioners. Some of the follow on work will tie in with the work of the education working group. An Adult Health and Social Care paper will be drafted to identify the levers to be used by individuals to grow the autism work locally e.g. Partnership in Practice agreements and Community Health Partnerships etc.
2. Note of last meeting
Continue to feed into the research agenda through Helen Marwick who sits on the ARCG.
3. Matters arising
The group was advised that all the funding for last year has been issued and that we have no programme resources for this year. We now need to convince local partnerships to imbed good practice in services.
The Spending Review is likely to be announced in November when the new Ministers firm up their plans for the next administration. Autism features in many of the manifestos.
4. Project updates
Richard gave a presentation on the ASD Social Firms Coordinator project (Annex A).
Kirsten reported on her work as Autism Coordinator for the Borders. This post has now ended as no continuation funding was made available (Annex B).
The group agreed that these projects encourage partnership funding and joint working and are an example to local authorities on how they can improve local delivery.
Alison shared some of the outcomes of the NES Learning Resource and statistics taken from the website. Google analysis has provided a huge amount of data on the NES website and will prove very informative. The information she provided is included at Annex C.
Aline-Wendy updated the group on the progress of the Scottish Autism Services Network. They are working to ensure that there is no duplication of work carried out by others and look at how they might fill the gaps that have been identified. She encouraged the group to consider putting the reports of the short term projects on the network website so that others can learn from them. They are addressing the issue of fundraising to support the work of the network and are pursuing trusts in higher education for this funding. Bette reminded the group that other policy areas across the Scottish Executive have an interest in the work of the network.
5. Evaluation of projects
Bette informed the group that she would ask Scottish Executive Analytical Services to evaluate the projects and pick out the outcomes from across them all.
6. Policy into Practice subgroup update
The subgroup held two consultation events for commissioners of autism services with the aim of finding out what they need from guidance. The feedback from the events showed there was a desire for a network forum for commissioners and that budget constraints were having an impact on services. It was agreed that an A4 sheet on each project funded would be sent out for information on what is being done to improve services. Guidance will be drafted and presented to the group before publishing.
7. Any Other Business
Autism survey
An e-mail from NAS asking for people to take part in a survey on autism was shown to the group and Joanne apologised that this had been sent out in Scotland as it was only for England. They are collecting statistics to inform them for a campaign at a later date. Bette suggested that it would be helpful to have a discussion with them about the timings of campaigns around the same time as the guidance is issued.
Assessment and Treatment Beds
The Scottish Executive held an event last year aimed at NHS practitioners to discuss the use of these beds for people who have a learning disability and/or autism. There is a commitment in the Mental Health Delivery Plan to get the right services for people who have challenging behaviour. Dr Perera from the Royal College of Psychiatry is conducting research on the use of the beds as at May 1.
Way Forward
The group discussed how to build capacity to make a difference locally.
· Transport issues will be raised at the next SAY meeting in June.
· Henry Simmons represents Community Care Providers Scotland on the PiP network and providers issues should be fed in through him.
· The Scottish Executive Education Department still has an Autism Working Group to address issues which affect children.
· The group were encouraged to use their own levers to raise issues at a local level through Community Health Partnerships, local authorities and health boards.
Action Point - copy the ASD reference group in to information about the work of the same as you? group
Marion Thompson
Change of Unit Name
Following restructuring in the health department The Adult Support and Protection Unit has become the Adult Care and Support - Change Team. Part of the teams remit will take forward work around 'Shifting the Balance of Care' leading to more preventative, more community based health care. This will obviously build on the team's previous and current work.
Stella introduced the point that NHS Boards have no designated places for users/carers. It was suggested that she access the Community Health Partnerships, community planning groups or the SCLD user forum for Changing Lives.
Alison had heard about the Care Aims model of working which meant that assessment occurred within an 8 week time frame and then they exited and this caused her some concern for people with autism. She was advised to contact the source for this model and feed in her concerns to them.
8. Date of the next meeting
The next meeting was set for 2 July 2007 at 1300 - 1600 and Aline-Wendy offered her apologies as she was unable to attend on this date.
Annex A
SOCIAL FIRMS AND EMPLOYMENT FOR PEOPLE WITH ASD
The Development of Social Firms to Support the Employment of People with Autism Spectrum Disorders in Scotland .
Richard Ibbotson, National Director - Scotland, Autism Initiatives UK
This presentation will discuss:
Overview of Employment in Scotland for people with ASD
Background to Social Firms in Scotland
The ASD Social Firms project
BACKGROUND
-A multi agency group of ASD agencies forming an unconstituted partnership for the ASD Social Firms Project
-Identifying the unique employment potential of many with ASD is not being tapped
ASD Social Firms project: the employment of an ASD SOCIAL FIRM CO-ORDINATOR
PARTNER AGENCIES
In to Work
The Scottish Society for Autism (SSA)
National Autistic Society (NAS)
Edinburgh and Lothian Asperger Society (ELAS)
Parents of Autism Spectrum Disorder - Adults (PASDA)
Autism Initiatives UK
Autism Resource Centre Glasgow
EMPLOYMENT CONTEXT in Scotland
Employment rate 75.5% (Higher than UK average)
Unemployment rate (general population) - 5.3%
Seeking employment - 3.3%
Anti-Discrimination against people with disabilities is safeguarded in law
13/7% of the population of Scotland have along term health problem or disability (800,000 people)
42% of working age disabled people have paid employment
EMPLOYMENT in SCOTLAND for people with ASD
· In the disabled population it is people with learning disabilities that find the greatest difficulty in accessing employment (Boardman, et al 2003)
· Generic disability employment schemes struggle to accommodate the diverse and unique needs of ASD
· Employment schemes specifically for ASD (few) focus on those needing minimal ongoing support into existing employment
· Many with ASD and learning disability in "day centres" which focus on leisure and social opportunities
PEOPLE with ASD in the WORKPLACE
· Motivation to work may be untypical and unique
· Recognised strengths (Bicknell, A 1999)
· Recognised ways of supporting people (Bicknell, A 1999)
SOCIAL FIRMS
A form of social enterprise where a business is developed to provide employment for people with disabilities or other disadvantages.
· Aim to address social and economic exclusion
· A significant number of employees have a disability - all are paid the market wage
· 505 of turnover earned through sales or services
· Offering a higher level of support than open or sheltered employment
· Some Social Firms offer employment training and then support to move on to open employment, others offer permanent employment opportunities
3 types of Social Firm development
· Emerging Social firm from an existing project
· Developing a business idea from scratch
· Buying into and existing business
BENEFITS of SOCIAL FIRMS for People with ASD
· A workplace with an inclusive and supportive approach
· Business developed around specific skills, interests and abilities
· Mental health benefits of being productive and occupationally busy
· Work setting can be consistent, structured and routine based (rather than the fluidity of a "day service")
· Identity / self-esteem as an "employee" rather than a "service user"
· Financial independence
ASD SOCIAL FIRMS PROJECT
The appointment of an ASD Social Firms Co-ordinator for 2 years
Hosted by Autism Initiatives UK but working across partner agencies and throughout Scotland
2 distinct objectives:
· To help agencies to develop ASD Social Firms
· To support generic Social firms become better equipped to support people with ASD
ASD SOCIAL FIRMS PROJECT:- OUTCOMES
· 6 active Social Firms giving employment to +30 adults
· Guidelines for the development of ASD Social Firms
· "Good practice" guidelines for existing generic Social Firms
· Annual conference / seminar
· Building capacity and knowledge within each partner agency
ASD SOCIAL FIRMS PROJECT:-
POTENTIAL PROJECTS
· "Bits and Bobs"
· Asperger Employment Agency
· Craft mail order service
· Horticulture businesses
· City Cycles
Generic Social Firms: Recycling projects, Bed and Breakfast hotels, café and sandwich shops
PROJECT UPDATE
Funding:
· Charitable Trusts and Foundations
· Unallocated resources within partner agencies
· Scottish Executive grant (interviews 09th May)
Sustainability:
· Aim to build capacity and knowledge base
Evaluation:
· Multi agency steering group
· Recognised Social firm evaluation toolkits
Annex B
AUTISTIC SPECTRUM DISORDER (ASD) CO-ORDINATION IN THE SCOTTISH BORDERS - Kirsten Haughey - 23RD April 2007
BACKGROUND
· Borders ASD working group set up in October 2004
· Request for funding for Adult ASD Co-ordinator submitted to Scottish Executive
· Joint Social Work/NHS post
· Sitting within Planning in Social Work and NHS
SEVEN KEY TASKS
· Drive forward agenda for adults with ASD
· Audit numbers of adults with ASD and promote development of an ASD database
· Co-ordinating role and promote the use of Personal Life Plans
· Create an ASD Information Resource Base
· Promote use of a single multi-agency care pathway
· Raise awareness of ASD in the Borders
· Promote the review of people with ASD placed out with the Borders
ACHIEVEMENTS
· Liaison with people with ASD and local support group
· Autism Update Event
· "Seeing things my way" Conference
· Formation of working group
· Identified lead people
· Information resource base in local library
· Training
· Raised awareness e.g. within planning, development of leaflets, articles in local papers, interviews with Radio Borders etc
· Liaison with Local Area Co-ordinators, SW and NHS professionals, independent sector, primary care etc
· Liaison with SSA, NAS and Autism Initiatives
CHALLENGES
· Gathering data e.g. numbers of adults with ASD
· Short time span - funding for 1 year
· Continuation of Co-ordinator's post
· Geography of the Borders
· Employment and ASD road shows
· Development of a Borders ASD website
· Development of leaflets
· Final report with recommendations and action plan
BENEFITS OF CO-ORDINATOR POST
· Time to focus
· Co-ordinate and bring together
· Working across Social Work and NHS planning
· Facilitating change
· Assigns more importance to ASD
· A catalyst for service improvement
· A contact person for support, advice and direction
WHAT PEOPLE THOUGHT
· "we are delighted that autism is finally being taken seriously. Having a co-ordinator in post appears to be driving issues ahead more effectively and people seem to be listening…"
· "It's a great development - I just hope things continue after the funding runs out.."
SIX MONTHS ON …
· No continuation of funding for post
· Post ended November 2006
· Co-ordinator's report signed off by Social Work. Still to be signed off by NHS Borders
· Borders ASD Working Group continuing and attached to Learning Disabilities Board
· Continued training as requested
· Raised awareness but still no resolution for Asperger syndrome service developments
· Previous ASD Co-ordinator back to LD Team, with some allocated time for Autism.
Frequently Requested to carry out training, diagnosis, advice etc., for adults with autism and Asperger syndrome
Annex C
NHS Education for Scotland.
ASD Projects Outcomes. April 2007
1. February 2005.
Interim Report for Autism Argyll Project.
2. March 2005
Scoping Exercise to inform the development of the Primary Care CPD/learning resource
commissioned and undertaken by Professor Aline-Wendy Dunlop &Dr Tommy
MacKay, The National Centre for Autism Studies, Strathclyde University.
3. February 2006.
Directory of individuals and teams undertaking assessment and diagnosis of ASD in
Scotland. (Print run 6500)
Distributed widely within Primary Care and across Scotland
4. May 2006
Parent Carer Booklet. (Print run 6000)
Two year supply distributed to all known diagnostic centres in Scotland.
5.June 2006
Parent Booklet and ASD Directory available as PDF Documents on the Scottish Autism
Services Network website.
6.September 2006
Launch of web based Learning Resource for Primary Care Professionals. Mail-shot of
accompanying leaflets to all GP's across Scotland.
Three launch events (Glasgow, Edinburgh Aberdeen)
7 October 2006
Parent/Carer booklet (Second print run 6000)
Distributed as per requests across Scotland.
8 November 2006
Autism Diagnostic Observation Schedule (ADOS) Scoping Exercise completed by
Dr Anne Gilchrist, Professor Anne O'Hare & Mrs Ros Mc Caughey.
9 January 2007
Training in the Diagnostic Interview for Social & Communication Disorders (DISCO)
Proposal. John Cameron. The Autism Resource Centre (ARC) Glasgow.
Three-year training programme for 98 trainees based in Scotland with a nationwide remit.
Partnership start-up funding to:
• Acquire seven course worth of training materials
• Set- up the infrastructure to organise the training
1O January- March 2007
ASD Seminars. Three events with two held in at New Struan Campus and the third in
Aberdeen.
97 delegates attended. Collated evaluations available.
NHS Education for Scotland.
ASD Projects Outcomes. April 2007
l1 February and April 2007
Training in the Developmental, Dimensional & Diagnostic Interview (3di) computerised
assessment for ASD (Software included). Two two-day events held in Glasgow with 43
trainees attending. Evaluations from first course available.
Web Server Statistics for NES ASD internet
Program started at Tue-13-Feb-2007 14:22.
Analysed requests from Tue-26-Sep-2006 09:48 to Tue-13 Feb-2007 02:00 (139.68 days).
General Summary
Successful requests: 67,129
Average successful requests per day: 480
Successful requests for pages: 32,482
Average successful requests for pages per day: 232
Failed requests: 277
Distinct files requested: 287
Distinct hosts served: 2,865
Data transferred: 634.84 megabytes
Average data transferred per day: 4.55 megabytes