Last week I got the chance to spend time with some SENCos. I was invited to talk about Peter’s story and with his permission, I did just that.
It’s the same story every time – there is no question that there are very many professionals ‘out there’ that want to ‘get it right’. For about 7 months I have been periodically telling our story. Without exception, I am pushing at an open door – that is, the people listening, are listening with every fibre of their body. The room is silent and there is no one in there that isn’t moved and doesn’t want things to improve.
Today I was with a group of commissioners from a number of local authorities, whose portfolio’s include autism. The group today were as kind, welcoming and engaged as all the other groups I have met with. I know they would like to make things different for future generations.
Bit by bit, the voice of those autistic children that don’t have an associated cognitive disability (some call them ‘high functioning’) is being heard. The challenges associated with ‘the system’ that their families face is open for all to see.
This time was different though. Following advice from our local leads, I included some recommendations and ‘advice’. I got bossy. I usually find it easy to be bossy but not when it is something as important as this. There is no way I want to send my audience running away… I need for them to keep on coming if the message is to continue to be shared!
I pointed out that under the new systems things would have been even worse:
- that Peter would never have met the current CAMHS criteria and had that essential support;
- that without the input of a clinical psychologist he would never have been referred for an autism assessment…
- BUT under the new system, had he been referred, that referral would have been turned down because teachers are now (contrary to NICE guidance) gatekeepers – and Peter’s teacher’s ‘knew’ he was ‘normal’.
I pointed out that there was no process to follow when there was a disagreement about his diagnosis:
- which drove school staff to their underground world of gossip and parent blame … and
- left the occupational therapist and clinical psychologist with nowhere to go when they knew that their recommendations were being ignored.
I made it clear that in my experience there is no true Governance in education:
- that good governance:
- is accountable
- is transparent
- follows the rule of law
- is responsive
- is equitable and inclusive
- is effective and efficient
- is participatory
- … and, in my experience this just doesn’t happen at any level in education (beleive me, I have tested the systems!).
I reflected back to them how their systems are riddled with perverse incentives:
- that often teachers are not rewarded for identifying SEND, but penalised for not meeting need if they do (all on their own with no training and support): some even report bullying from their senior management team for ‘doing the right thing’;
- that the schools that support children with SEND earn no more than those that don’t;
- that there are no process at authority level to prevent escalation of need…
and on that note, I pointed out that in Peter’s case the escalation of need amounted to a spend of about £1,000,000 or more.
I made 4 requests:
- Develop and pilot a multi-agency policy to be followed when there is a disagreement over a diagnosis.
- Examine your protocols for autsim diagnosis: do they REALLY enable early detection and diagnosis? Do they adhere to NICE guidance?
- Recognise that 70% of those with autism have a co-existing mental health problem. Most are preventable. Develop and test plans for early identification and specialist intervention to prevent escalation of need.
- Look for ways of ensuring assessments by social care can be more appropriate… We rarely ‘fit’ the criteria of the disabilities team and so we are assessed through the lens of a ‘safeguarding problem’ and we don’t belong there.
Hours of thought and preparation goes into these presentations and they are emotionally draining. Bit by bit though, I do feel we are being heard. I am so grateful for the support we have had. In the early years, Peter’s clinical psychologist taught me more than even I realise, I think. His most recent local authority case officer was amazing (more here on that!) and Lily school just blows me away. They are teaching me that true inclusivity and a culture that allows and enables children to be themselves is possible, and that SEND support really can exist in a proactive, kind and appropriate way.
So I trust that I am paying that support forward and that it will benefit future children, families and those professionals that do really want to help.