Monday, 23 November 2015

North Yorkshire's autism strategy 2015-20 - Ignoring the evidence.

North Yorkshire County Council is about to launch its new autism strategy for 2015-20, available here. It has been preparing the strategy for some time, with the usual consultation involving people with autism, families and parents, in conjunction with Health. I read the consultation draft, went to a meeting and put in a written response. I also have a child with autism, so I have some skin in the game.

This post is about the employment and education bit on page 31:
Theme 5 - Employment and education  
Education and employment are critical
 for ensuring a positive future with good outcomes for people with autism. We know that young people with SEN including those with autism do less well than their peers at school and college and are more likely to be out of education, training and employment at 18. In order to aspire high for people with autism we need to improve education and employment opportunities locally. 
What is the progress so far? 
A “Review of Evidence Based Educational Interventions for Autism in North Yorkshire” has been written to highlight the national recommendations and best practice guidelines; leading to an NYCC statement regarding autism and evidence based intervention
OK. Education and employment are critical. Got it. A review has been was written (back in 2013). Yep. What does it say?
Generally it would appear that the interventions with the most robust research evidence are those which adopt a behavioural approach and look to enhance general behaviour, well-being and social communication. (p4)
Which interventions does the Council provide?
TEACCH, SCERTS, Intensive Intervention, Visual Supports including PECS, Social Stories and Comic Strips, and Lego Therapy.(p5)
Are any of these interventions behaviourally based? Any Applied Behaviour Analysis methods? Discrete Trial? Early Intensive Behavioural Interventions? Er, no. (Intensive intervention means intensive support to get excluded children, or children at risk of exclusion, back into their mainstream school.) Is the Council planning to use behaviourally-based interventions in the future? Er, no. Behavioural interventions don't make the list of educational priorities for the next five years.

So the Council seems to be deliberately ignoring its own report that sets out the interventions with the most robust evidence, despite claiming to "promote evidence-based practice" and use a "scientist-practitioner model". Why?

This is slippery behaviour. By referring to this report the Council is implying it is following its recommendations - what would be the point of including it if it wasn't - to give the impression of action. But then it doesn't follow it up. 

This leaves families with a second-rate service and children with poorer outcomes than would otherwise be the case. 

What's missing?

In the original draft strategy the Council said:
We will monitor a small group of people with autism during the course of the strategy to determine whether their lives have improved as a result of the actions undertaken. We will report the results so that everyone can see the progress that has been made. (p6)
This was dropped in the final version. This was a flawed idea in that there would be no statistical significance in monitoring a small number of people over what is a relatively short period of time, but the Council appeared to accept the principle of directly measuring the outcomes of individuals, which is, of course, the best way to see whether the intervention works, and should be top of the monitoring list, done robustly year on year.

The draft also laid out the following:
How will we know if it’s working? 􏰀
􏰀Increased teacher confidence in supporting children and young people with autism within Early Years settings, schools and post 16 establishments 
􏰀Children, young people and their families report better school experience 
􏰀The number of schools and settings using the AET competency framework
and national standards increases 
Reduction in school exclusion, family breakdown and out of authority
􏰀More people working with the Supported Employment service to achieve
employment are successful in finding and maintaining a job 
􏰀Employers feel more confident in making reasonable adjustments in the
workplace so that people with autism can keep their job 
􏰀The Department of Work and Pensions, on a regional level, become involved
in the work of the Steering Group
Most of these things didn't make the final version. Some of them did make it, albeit altered, e.g.
Reduction in school exclusion, family breakdown and out of authority placement
Increase access to intensive support for reintegration of children and young people with autism that are excluded or at risk of exclusion to reduce breakdowns in educational placements 
-dropping the pledge to reduce family breakdown and out of authority placements.

In a sidebar to the list above, is a small note:
What’s missing here? is attainment gap appropriate measure? Speech, indie living skills?Employer confidence?Define educational outcomes?
Yes!Yes!Yes!Yes!Yes!YES! This is the really important stuff. How many people with autism can speak, how many gain independent living skills - stuff that families really value- is missing . Families have been asking the Council to measure these things for years to no avail. I know that for some families these aren't priorities. But for many families they are top of the list. 
The SEN attainment gap is one of the worst in the country - again it doesn't get a mention in the final version. Perhaps it is too embarrassing. 

Instead we are left with a list of priorities which involve a lot of promoting, providing opportunities, and developing guidance. The pledge to increase the number of people in employment disappears. More soap and flannel.

Perhaps I am being too harsh. Towards the end of the strategy the Council says:
An implementation plan containing Specific, Measurable, Achievable, Realistic and Timely (SMART) targets will be written following the publication of the strategy clearly demonstrating what we aim to achieve and how we will measure progress towards this.(p39)
Should I wait for that before I pass judgement? Somehow, I'm not optimistic. The key things for me are not there. or have been removed. There is no commitment to use the most robust evidence-based interventions, and a poverty of ambition for what remains. 

Thank you, North Yorkshire, for the invitation to the launch event, but I won't be attending.

Perhaps I should explain that although PECS is behaviourally based (it was invented jointly by a behavioural therapist and a speech and language therapist) I don't believe the Council is implementing proper PECS programmes. In the words of Pyramid, the company that runs PECS, "In order to really be able to teach others how to use PECS and its 6 phases, an individual must be a PECS Supervisor," As far as I am aware, none of the autism outreach service (ASCOSS) are qualified  PECS Supervisors.

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