The Scottish Strategy for Autism Progress Report - Foundation Stage (2 Years)

This is a report reflecting the progress so far on the Scottish Strategy for Autism.

Annex 1

Subgroup 1: Achieving Best Value for Services

Recommendation Progress Action/Status
Recommendation 5: It is recommended that Knapp's work on the economic costs of autism is analysed and applied to the Scottish context to inform strategy and planning in what interventions lead to positive impacts, both for individuals and for the economy as a whole. Particular attention should be paid to his 'invest to save' assertion that if 4% of those with Asperger's were given appropriate support into work, this would ultimately mean that those individuals may not require services and could contribute to the economy. Tommy Mackay delivered a presentation to the group on the aims and objectives of the Microsegmentation Project.

Primary aim of the study is to identify the escapable costs of autism, that is, those which would not be incurred with early and appropriate interventions for individuals on the spectrum, and to provide the evidence base on which these can be applied to the context of the population of Scotland.

It will do this by carrying out a 'micro-segmentation' of the autism spectrum, its co-morbid conditions and its associated problems. This will form a basis for providing a conceptual map of the autism spectrum.

Tommy's presentation served to further the group's understanding of the Project.
Awaiting outcomes of the Project.
Recommendation 6: It is recommended that the effectiveness of implementation of the Commissioning Guidance is reviewed by the Reference Group by facilitating an audit of current [Local Authority] service commissioning. Initial engagement with commissioners of services via the ADSW Learning Disability Subgroup. The aim being to gain an impression of how the autism commissioning guidance was being used and how it could be improved. Some engagement and verbal feedback. Intelligence being gathered on approaches to auditing commission in other parts of the UK and a summary will be submitted in due course. Commissioning is a major issue and impacts on delivery of other recommendations. Furthermore, SDS means that the commissioning landscape has changed since the launch of the Strategy, therefore this recommendation may need to be reviewed in that context. To consider discussing further as a main Reference Group item and await feedback from the Microsegmentation project.
Recommendation 7: It is recommended that the ASD Reference Group commissions research to examine and compare the outcomes in relation to quality of life for those who are supported by autism service providers and individuals who access generic provision, and that relevant findings are used to inform revised guidance for commissioners of services for people with ASD. Been considering what the parameters of this should be and potential links with Recommendation 6. Need a better understanding of the process of commissioning research and associated costs.
Recommendation 8: The ASD Reference Group, in collaboration with autism service providers, will identify the key determinants of service provision that result in improved quality of life for people with ASD, across the spectrum and across the lifespan. Met with Subgroup 6 - people with autism and their carers - to discuss and gather feedback. Possible links with Recommendation 7. Further work to be done in 2014.
Recommendation 9: It is recommended that the ASD Reference Group hosts an event to evaluate and recognise good practice in Scotland to disseminate models of practice, to evaluate success, recognise benefits and limitations and agree how to develop good models across the country in a way that is cost-effective. Submitted a proposal to collaborate with the British Institute for learning Disabilty to publish a Scottish edition of their Good Autism Practice (GAP) Journal.

GAP conference delivered in November 2013 which was highly successful.

Special Scottish edition of the GAP journal published in November 2013 and launched at the GAP event.
Will consider how to build on this and promote dissemination of good practice e.g. maintaining the journal in some form or perhaps an annual edition.

Also some thoughts around developing a Knowledge and Practice portal for sharing and learning across the country. To be discussed further.
Recommendation 10: It is recommended that agencies and services develop a menu of interventions including advice, therapeutic interventions and counselling for children, young people and adults with ASD that are appropriate and flexible to meet individual need. This menu should identify advice and support that is immediately available, and set out the referral and assessment process for all other services and interventions. This work has been taken forward by Subgroup 3 - Diagnosis, Intervention and Support.
Recommendation 11: It is recommended that consideration is given to the specific supports needed for the more able individuals with ASD. Been discussing this under the 'Quality Scotland: Public Service Improvement Framework' and looking at ways of increasing awareness and knowledge of autism at a strategic and service level, including their Access to Learning system (A2L). The platform is used by all Local Authorities, Fire and Police Services as well as some voluntary organisations. This work will also progress the strategic goal of increasing and improving access to mainstream services. This may also be of relevance to Recommendations 6,8 and 9.

Subgroup 2: Cross Agency Collaboration and Involvement

Recommendation Progress Action/Status
Recommendation 13: It is recommended that the ASD Reference group explores options for developing user and carer capacity to be able to participate in local planning processes. Carried out a sample scope on what the NHS, LA and voluntary organisations are doing locally in order to establish good practice examples.

Reports received from One Stop Shops about how they support involvement from people on all parts of the ASD spectrum.

Looked at developing guidelines based on National Standards for Community Engagement.

Looked at alternative guidelines based on good practice on engaging carers.
Consultation on proposed guidelines on consultation.

To consider launch of guidelines and corporate logo.

Training or presentations to Local Authority staff, Community Planning Partnerships etc.

To consider resources needed - consultant/employee/funded project/member of the Subgroup.
Recommendation 14: It is recommended that the SDS Strategy Implementation Group and the SDS Bill Reference Group ensure representation from the autism community so that their interests are taken into account as further developments take place. Organised a consultation meeting with people with autism and their families to comment on the proposed guidance and regulations for the Self-directed Support Act. Current developments in SDS are likely to take account of the interest of people with autism in the same way as other people are considered. To check through the Whole Life Stage.

To have future discussion on implementation of SDS and implications for people with autism say 12-18 months after implementation of the Act.

To consider resources needed - conference costs etc
Recommendation 15: It is recommended that existing reports on the work of Scottish Autism Services Network are formally evaluated with a view to assessing its long-term viability and effectiveness. Currently the Network is funded for 3 years and it would be advantageous for this to continue for the duration of the Strategy. The Group is kept up to date with developments but has no plans to take any action until nearer the end of the 3 year funding.

(no resource implication)
Recommendation 16: It is recommended that the ASD Reference Group contributes to a review of the SIGN guidelines and, in doing so, considers where and how best this innovation might be replicated for adults and other relevant professions. Currently postponed but the group will monitor. No resource implications.
Recommendations 17: It is recommended that the Training Subgroup of the main Reference Group is reconstituted and strengthened by the inclusion of an SCLD representative to undertake an audit of existing provision and to take evidence from grass roots trainers with a view to recognising strengths and gaps as well as identifying the means by which to further improve what is on offer. Introduction of Open University and Strathclyde University courses for university level training.

Examined and considered the applicability of a Scottish Framework for Autism Training.

Supported the application by NES to look at good practice in Autism training in Scotland.

Developed a proposed 4 tier model for classifying and standardising autism training in Scotland.
Will work with NES to look at outcomes from the funded NHS autism training project, particularly the effectiveness of training already in place and standards for improvement in delivery.

Seek to extend NES 4 tier training project to Local Authorities, voluntary and private sector.

Need to consider resources to classify existing training, draw up clear standards for different tiers.

Encourage the opportunity for people with autism co-delivering autism awareness training.
Recommendation 18: It is recommended that good practice transition guidance is developed, building on from existing educational guidance, in order to support the lifelong challenges facing people with autism as they make daily and life-stage transitions. Worked with Scottish Transitions Forum to develop good practice guidance on the support young people receive through life transitions.

Introduced the funded projects to the good practice guidance on transitions.

Liaised with Autism Network Scotland re. their On-line Transitions Survey and Transitions Event.
Continue to work in development of national good practice transition guidance and monitor implementation and outcomes.

Co-organise with other groups a National Transitions event to look at life stage transition for people with autism.

(to consider conference resources)

Note from the group: Future resources will have an impact on the ability to deliver on the Recommendations and consideration should be given to funding some 'project staff' to support the subgroups. Recognise that the funded projects are doing valuable work, however, there will need to be a degree of central coordination to allow them to feed their work into delivery of the Recommendations.

We were going to produce a draft on the Standards for Engagement before we took a pause. This work is underway and it is best to conclude this and then pick up it if appropriate after relaunch.

Subgroup 3: Diagnosis, Interventions and Support

Recommendation Progress Action/Status

It is recommended that agencies and services develop a menu of interventions including advice, therapeutic interventions and counselling for children, young people and adults with an ASD, that are appropriate and flexible to individual need. This menu should identify advice and support that is immediately available, and set out the referral and assessment process for all other services and interventions.
Menu of interventions drawn up and published.

One Stop Shops and some of the Autism Development fund projects already providing a range of interventions
Needs to be rolled out throughout the country at strategic and local levels.

Resources may include: funding for large scale event, local events at One Stop Shops and inputs at strategic level conferences. Eg ADSW, NHS Chief Execs etc

Materials may need to be developed.

Autism Network Scotland can do some of the work but significant additional input may also be required

It is recommended that consideration is given to the specific supports needed for the more able individuals with ASD.
Included in menu of interventions

One Stop Shops eg No 6. Some local Strategies target this client group. Eg CEC.
As above

It is recommended that a request is made to NHSQIS, as the body into which SIGN has been integrated, to develop guidelines for evidence-based approaches to the diagnosis and management of ASD in adults.
New NICE standard for autism was published in Jan 2014.

It is recommended that approaches are made to the Royal College of Physicians and Surgeons to establish the feasibility and desirability of disseminating ASD materials in e- CPD formats.
Done Will be part of NES training framework

It is recommended that an assessment of national waiting lists is undertaken to clarify the extent of delays and that the ASD Reference Group considers and responds to these findings.
Autism Achieve Alliance (AAA) project has gathered a wealth of data showing that improvements in waiting times are achievable. AAA will publish their data very soon and will be available via the Strategy website. This will also impact on Recommendations 22 and 23.

Initiatives to address waiting lists for assessment should include consideration of further training on the use of ADOS, ADI-R, 3di and DISCO to meet increased levels of demand.
AAA project has looked at ADOS as a way of addressing diagnosis in adults. The NES training framework project is making good progress and will help identify (i) the training and experience required by NHS professionals in a variety of client-centred assessment approaches and (ii) ways in which this could be disseminated.

It is recommended that the ASD Reference Group explore the ways diagnostic processes for adults and children are different and how this should inform practice.
AAA project has looked at ADOS as a way of addressing diagnosis in adults. See Recommendations 21 and 22 above.

It is recommended that the directory of individuals and teams undertaking assessment and diagnosis of ASD in Scotland is reviewed, updated and re-distributed.
AAA project drew up a list which is published on the Strategy website however it needs updating. Will be further considered by AAA.

It is recommended that a review is conducted with a view to updating and
re-distributing the quality diagnostic standard if it is found to continue to be of benefit.
The standard is being updated. Will be incorporated into AAA outcomes.

Subgroup 4: Wider Opportunities and Access to Work

Recommendation Progress Action/Status
Recommendation 26: It is recommended that the supported employment framework for Scotland is evaluated in terms of its impact on employment and employability for people with autism. The Group has discussed the Supported Employment Framework and produced a short statement to the main Reference Group. The action on this recommendation is now complete. Having identified the challenge of diversity and lack of coordination in the sector, the group continues to facilitate the important role of developing a network of autism and employment projects.
A summary guide on employment policy and structures (for professionals not familiar with the complex context of the employment sector) has been produced and published on the Strategy website.

This also culminated in a successful learning event in October, hosted by Autism Network Scotland.
Looking at ways to increase dissemination and distribution of the guide and sign-post it on the Strategy website.

Aiming to organise a second autism and employment projects networking event around Oct 2014.
Prior to round two of the development fund, the Group submitted observations and suggestions for what type of activity/project would bring benefits to people. A number of projects funded through the development fund have also been invited to share information on their activities at the subgroup meetings. This proves to be supportive to the projects and also enables the subgroup to maintain an understanding of what is happening across Scotland.
The Group has identified that a significant challenge faced by people with autism in the workplace is a lack of understanding of employers about autism. The Group is planning to produce a document with positive, successful case studies about people with autism who have been successful in finding employment.
The Group will continue to invite to its meetings, representatives from autism and employment projects, ensuring it keeps up with developments, is involved in a network of activity, and that projects don't work in isolation.

Subgroup 5: Research

Recommendation Progress Action/Status
Recommendation 12: It is recommended that an evaluation of existing research is commissioned by the ASD Reference Group as well as consideration given to what further research is necessary with a view to disseminating what is available and to the commissioning some pieces that would be of particular practical value to people with ASD and their carers. The Group has met regularly over the past 2 years; it's role being a largely reactive one - for example responding to specific requests for information from other Subgroups and the Scottish Government on a number of issues where their relevance to ASD required clarification. Members of the group are actively involved in the three substantive research projects funded to date through the strategy:

- The Microsegmentation Project (Professor McKay is a Principal Investigator);
- The Waiting List Initiatives Project (Dr McClure is a Principal Investigator);
- The National ASD Database and Early Identification Project (Dr Aitken is a Principal Investigator)
- Autism Research into Action seminars

Subgroup 6: People with ASD and carers

Subgroup 6 was established in order to give people with ASD and carers an opportunity to actively contribute towards the implementation of the Strategy's Recommendations. Subgroup 6 met regularly during the Foundation period to input and give views from their perspective on the work of the other Subgroups, for example, the Menu of Interventions and case studies for the mapping project. The eConsultation Group is a satellite group of people with ASD and carers who expressed an interest in a virtual network to feed their views into the work of the Reference Group and the Subgroups.

Subgroup 6 received a number of presentations including from Autism Network Scotland and NHS Education, discussed a number of Strategy papers including the Good Autism Practice journal, the Menu of Interventions and the Employment Guide, and members were active in attending the Autism Research Seminars and learning events hosted by the Network including the Employment and Local Authority events.


Email: Ali Taylor

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