Saturday, 19 July 2014

The recent autism education debate and using the local offer to get social communication input for your child/young person

Yesterday I found myself reading Hansard to see what had been said in the debate on autism education (I admit to being an autism education anorak). 
Amongst the party political point scoring (zzzzz) were a few things that stood out for me.
There was general agreement that early diagnosis is key because it opens the doors for early intervention.  Of course we all know that early intervention leads to better outcomes because that’s what research keeps telling us…….but where is this mythical ‘early intervention’?  I know hundreds of families of children with autism now and not one whose child had any kind of significant early intervention (that which delivers sustainable, real life change for the better).  A bit of portage maybe, a tad of speech therapy if you’re very lucky, but nothing that does anything more than scratch the surface and certainly nothing that goes to the core difficulties at the heart of autism.  So that’s one myth that needs busting.
There was also a prevailing view that kids with autism are extremely bright and that this makes it even more important that they are enabled to access education.  Sigh.  Yes some kids with autism are very bright academically but the majority are likely to be a mixture of those with average IQs and those with IQs less than 75 (learning disabilities).  What about the average and lower IQ kids……are they not worthy?  Another myth for busting.
And never mind academic intelligence, what about emotional intelligence, which is arguably actually more important in terms of real life success?  Not even in the picture…..more about that later.
These are the MPs (those who turned up to the debate…..about 11 of them) who have made it their business to be informed about autism and autism education.  Very worrying.
So that was the background.   Then there was quite a focus on (drum roll......) The Local Offer.
Edward Timpson (Parliamentary Under Secretary of State for Education) commented on the local offer with 'If autistic children and young people and their parents feel that there is not sufficient provision for them in the area, they will be able to use the local offer to challenge the local authority to improve that provision.'
Let’s back up a bit on that and take a look at what the local offer is. 
The local offer is meant to provide information on what services children and young people with SEN and disabilities and their families can expect from a range of local agencies, including education, health and social care. Knowing what is out there is meant to give you more choice and therefore more control over what support is right for your child.
The local offer should provide information on a number of things, including:
  • Special educational provision;
  • Health provision;
  • Social care provision;
  • Other educational provision; 
  • Training provision;
  • Travel arrangements for children and young people to schools, colleges and early years education; and
  • Preparing for adulthood, including housing, employment and leisure opportunities.
The SEN (Local Offer) Regulations 2014 confer a duty on local authorities to consult various stakeholders when developing and reviewing the offer.  These include children and young people with SEN and disabilities as well as parents and carers.
So – go find your local offer and make sure the services and activities that your child needs are listed there.  In our area, I made sure there was reference in our local offer to social communication programmes for children with autism.  It wasn’t difficult – I just submitted it and it was published.  Of course the fact that it’s on there doesn’t mean you’ll get it………but if you play your cards right, by lining your ducks up, you can set up the framework to win the argument for this kind of input (more on ducks in a mo).
The legislation also confers a duty on the local authority to seek feedback from children and young people with SEN and their parents and carers on the content and quality of the local offer.  Furthermore, it must publish these comments on its web site.
It’s not clear to me exactly what old Ed means by ‘use the local offer to challenge the LA to improve provision’ because there’s no duty to act on feedback calling for improvements.  A couple of months back, I sent in some comments about our local offer’s lack of focus on monitoring and reviewing progress against outcomes.  I haven’t seen that since I sent it off and to my knowledge, it hasn’t appeared on the local offer web site.  Does that mean the LA is in breach of its duty?  Do I now have to go through the complaints procedure to get the LA to rectify that?  Yawn…….another complaint…….I will have grown a beard and died before that process actually changes anything for my family.
The local offer must also be clear about how commissioning decisions and decisions about services are made and who is accountable and responsible for them.  So in Oldham, our process in terms of developing the Autism Strategy (the document that sets out the all-important outcomes) is for stakeholders to be invited to a series of workshops to ‘tell us about your priorities and help shape it (the strategy) in line with the needs of children, adults and their families in Oldham.’ What this actually means is that 8 people sit round each table (about 20 tables) and have 20 minutes to read through and comment on a 16 page draft strategy.  Then they hand their ideas in and never see them again.
We are told that the new SEN system will put greater emphasis on the long-term outcomes for young people, including getting a job. Much greater emphasis will be placed on preparing young people for employment and using routes such as apprenticeships, traineeships and supported internships to help them gain employment.
That’s great for those young people with SEN who have the social communication competencies that are always at the top of employers’ lists: flexibility, ability to work as part of a team, communication skills (inter and intra-personal), problem-solving, adaptability.  This collection of competencies is sometimes called emotional intelligence.
Children and young people with autism will struggle in these areas because these are the areas that are affected by autism.  I’ve written before about how developing ‘social skills’ in autism is about as much use as a chocolate fireguard, and why we need guided participation in autism education.
If you want your child to be able to access the type of social communication programme that will help them to develop flexibility, team-working, communication skills, problem-solving, adaptability, then here is a plan.
Lining up your ducks
Duck 1:
Use the NICE guidelines on the ‘Management of autism in children and young people’ to tell your local authority that in your local offer, you want to see services that meet NICE’s criteria for interventions that work on the core difficulties in autism. 
It’s worth noting that the type of autism intervention described by the guidelines has the potential to help people with autism both with and without learning disabilities: some of my earlier blogposts show me using such an intervention with my own son (without LD) as well as using the intervention with students at school.  Di’s blogposts show her progress in supporting Nick, who has LD as well as autism, through the same intervention.
The NICE guidelines recommend that providers of services consider a specific social communication intervention for the core features of autism in children and young people that includes play based strategies with parents, carers and teachers to increase joint attention, engagement and reciprocal communication in the child or young person. NICE recommends that strategies should:
  • Be adjusted to the child or young person's developmental level
  • Aim to increase the parents', carers', teachers' or peers' understanding of, and sensitivity    and responsiveness to, the child or young person's patterns of communication and interaction
  • Include techniques of therapist modelling and video interaction feedback
  • Include techniques to expand the child or young person's communication, interactive play and social routines.
NICE recommends that this intervention should be delivered by a trained professional.
Duck 2:
When you’ve told your LA that you want to see this type of provision in your local offer, find a trained professional who can deliver this type of developmental intervention.  Relationship Development Intervention (RDI) is one such intervention and RDI Consultants who work in the UK can be found here.  Get the RDI Consultant to submit a service specification to your local offer.
The programme of work can be delivered remotely (via skype and over a special internet-based learning system) so you don’t necessarily have to find a Consultant within your own local authority.  The idea would be that the RDI Consultant works directly with a teacher/TA and trains them to implement the RDI social communication programme.  The teacher/TA then works with your child in their current educational placement on a 1-1 basis for a specified time per week (say 30 mins daily) to implement the social communication programme.  The teacher/TA would film some of these sessions and upload the footage to the remote RDI Consultant who would provide feedback and support.
Duck 3:
Use the Education RAS, the social care RAS and the Health continuing care assessment to make sure that the need for your child/young person to have this kind of social communication input will be firmly enshrined in their EHC Plan. (Further thoughts on the E-RAS and continuing health care assessments to follow in a subsequent blogpost).
We have to find ways to make the system work for us.  This is one example of how that could be done.  I’m not saying it’s gonna be easy….but hey, we autism parents have got our underpants on over our trousers when it comes to getting our children’s needs met.  So go on, give it a go.