Special Educational Needs & Disability (SEND) Governance Review

Last night I was asked to speak at the Driver Youth Trust’s Launch event for the SEND Governor Review Guide having been honoured with the opportunity to contribute to its development. The perspective I brought to the project was derived from being a SEND link governor for an Outstanding Teaching School with an ASD provision, a trustee of two schools with very different cohorts and as a parent of a child with a number of diagnoses who has attended a range of school placements.

Whilst every teacher is a teacher of SEND, every governor is also a governor of SEND

Given that approximately 17% of children in a mainstream school are likely to have SEND at any one given time (and this percentage is rising as Local Authorities seek to keep children in mainstream schools for longer), it is important to consider that whilst every teacher is a teacher of SEND, every governor is also a governor of SEND, as children with SEND are not separate from but a part of, their whole school community.

Governors can have a variety of experiences and journeys into Governance, and schools themselves, each have their unique place and set up. However, despite our differences we are all bound by a common requirement to ensure that our policies, procedures and systems are in place, monitored well, and deliver the intended impact consistent with the vision, ethos and the strategic direction of our schools, but also the relevant legislation which includes amounts others, the Equality Act 2010 and Children and Families Act 2014.

However, when I first began the role of SEND link governor, I very soon became frustrated. Whether it was the reality or not, I felt it was very difficult to ask the challenging questions I knew I had to without it appearing to fulfil a personal agenda given my experiences prior, as a parent of a child with SEND. I felt disadvantaged and I struggled to stay on the right side of the line that separated the strategic from the operational.

I scoured the internet to see if I could find a document outside of me to help direct my questions and depersonalise them, and ensure that I was able to follow good practice and importantly, convince the Governing Board to support my challenge. I was also keen to raise the profile of SEND across our Board and spread the expertise beyond one isolated Governor. Though I did find some information, it was often disparate and spread over sites.

It is in the operation that the strategy is tested, and I feel that this is especially pronounced in SEND

I was therefore delighted when the Driver Youth Trust’s Chief Executive Chris Rossiter asked me if I would contribute to the development of the SEND Governor Review Guide, a single document where good practice could be brought together in one place that was free to schools. Not only that, but it is explicit in its message that children with SEND are the corporate responsibility of the Governing Board. And, by contributing to this document I further began to understand better where I was struggling before, that whilst governors operate at a strategic and not an operational level, it is in the operation that the strategy is tested, and I feel that this is especially pronounced in SEND. Questions and challenge can really uncover the effectiveness or otherwise of both the policies in themselves, and of their contributions to Inclusions and Equality in your school.

So if we want children with SEND to be successful in our schools, we have to set and test the parameters of our policies so that they can be. The alternative can be hours of interventions or meetings to try instead to make those children fit in with our policies. I very much hope that this guide will help support and promote discussion and reflection to enable schools to achieve this, and learners with SEND to access the high-quality provision that they deserve.

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The Parent Typo

Last week the @tes published a very strange article about parents of children with SEND with lots of typos in it.

Angry

Pandering

Non-engaging

Here it is if you are interested: https://www.tes.com/news/send-working-challenging-parents. It then made suggestions about successful strategies for DEALING with parents of children with SEND.

Anyway, it made absolutely no sense to me, so I thought I’d write my own. Only one adjective needed:

The ‘Respected’ Parent

You will know this parent as the parent of a child who thrives with school-based targets which are linked to the goals the parents have for that child during the 83% of the time that they are not in school.

This parent will not always get everything right and sometimes will need to be brought in for a discussion about something that isn’t working which they themselves might be contributing to, but they will come in willingly because when they last raised a concern with something you were doing, you openly listened and tried to work together to address it.

This parent forgives you when you get something wrong, and believes you are trying your best. This is because you trying your best is communicated well and comes with an invitation for suggestions to improve.

This parent has lower anxiety than they might have, because interactions started early and information about their child was taken on-board enthusiastically, before you had yet identified the concern they raise for their child yourself. They then trust that the manifestation of whatever it is they are concerned about, will be reduced in impact due to preventative measures and your understanding when it appears.

Because of your work in listening, working in genuine partnership and respecting their voice, this parent will be a better parent than they could have ever been otherwise, leaving their energy wholly available for their children, and not by necessity focussed on trying to force you to understand how simple, zero-low cost adjustments can help to combat just a little of the huge number of disadvantages their children face.

ABA – Starlight’s Position Statement

ABA – My Position (currently unreferenced)

 The ABA row is complex and underpinned by the suggestion from some that it is manipulative intervention that parents use on their autistic children who are unable to accept them as autistic. Interwoven with this stance is the general and ongoing behaviourism vs cognitive psychology row that exists in psychology in general, and the fact that access to EIBI (the type of ABA that is often given to children in the early years) in the US, is funded from health insurance and so to qualify has to be called ‘treatment’ which in the UK we sometimes consider has an aim ultimately of cure. However, in the UK, the application of Behavioural Analysis in schools is the dominant practice and practitioners have strived to make this adaptation successfully, and the independent schools that utilise a developed education model are almost all judged Outstanding schools.

 

History

The history of ABA can be said to have started with Skinner, who looked at the behaviour of animals. Through his work he uncovered natural laws of behaviour and this is well documented and evidenced. At the same time there was the psychoanalysis movement and cognitive psychology which tended to focus on cognitive processes which could not be observed, so had to be theorised. These were criticised by behaviourists to be irrelevant for that reason. For example. you can suggest someone has slow processing but then what? If on the other hand you define it as the behaviour you see, i.e. latency of response, you can design an intervention that gives someone practice at responding faster. Skinner’s work was purely about how organisms behaved and nothing about autism.

Lovaas was a Psychoanalyst who developed Skinner’s work for autism. He began using it for mental health disorders originally, and in amongst them was, at that time, homosexuality. The idea that you could reinforce non-homosexual behaviours and punish homosexual behaviours as he was attempting to do, is quite alarming to thinking about in our times now. The idea that a similar model could be applied to autism also sounds quite frightening in that context.

At that time, and until well into the 80s, our stance on disability was to cure people from them or if they were to be in mainstream society, to normalise people as much as we could. Prosthetics were made to look ‘normal’ despite the fact that the technology existed to make them actually useful to people with disabilities, and people were encouraged to use them or wear them to be accepted. This ideology still exists in some cultures and sections of society. Where ABA was used for children with autism, it often followed similar lines. It was very effective and enabled children to ‘look’ like they fitted in and ‘perform’ as typically developing peers. Not-ABA approaches also followed similar lines but was less effective.

Also, during this time, corporal punishment was used in mainstream schools to punish children who couldn’t or (considered wouldn’t) conform. ABA also used corporal punishment as it was standard educational practice.

Adults who received ABA as children were predominately educated during these years. Many of them report mental health problems and attribute that to ABA. However, many autistics who did not receive ABA also report mental health problems, from a predominately unaccommodating unfriendly anxiety-ridden school experience.

Education has moved on (though we appear to be in a blip where we might be going backwards). ABA has moved with it. In addition there are now 15 years of quality research to show that punishment has nowhere near the effect that positive reinforcement has on changing behaviours.

Changing behaviours means not accepting autism

So, now we might move on to an argument some make that we have no business changing the behaviour of autistics because that means not accepting them. I would argue that the purpose of ALL education is to change behaviour.

Young children do not know how to use a knife and fork, put socks on, sit in a classroom, respond to a teacher until they have engaged in adult-directed teaching. Tantruming toddlers are ignored and distracted and praised for demonstrating preferred behaviours. It’s how they learn and how we instinctively teach. Our education ideology now is that children should learn to be autonomous independent and contribute and that they need certain skills to do this, and so we frame our teaching through behavioural methods that we just use but haven’t applied scientifically in order to teach them.

For typically developing children reinforcement and occasional punishment comes in the form of social praise or punishment. It works because kids care what their parents, teachers and others think of them and of their behaviours. Social praise is internalised and self-reinforced often. Children pick up the small smile or eye contact that teachers give and actively seek it to check they are on the right lines. That is they use their social environment and the clues from other people to enable them to be successful, and behaviourists would say reinforcement and punishment influences their thinking behaviours too. Some others would say it is nothing to do with behaviour but some kind of intrinsic motivation, or maturation (though the rare studies of children brought up by wolves suggest maturation as it is described, without social engagement is unlikely to happen). Unclear also how intrinsic motivation is learned if not learned through behavioural reinforcement, -though some say it is genetic stemming from inherited internal morals or perhaps spiritual granted by God.

Children with autism are often not reinforced (or punished) by social behaviours in the same way, and so need more extrinsic reinforcement until they learn the value to them of social reinforcement. Teachers often wonder why a child continues their behaviours despite being told off. It isn’t because they are rude it is because that has no meaning for them. Earning a token for a preferred activity or a marble for their marble run for sought behaviour has a better effect (provided they are reinforced by something meaningful to them), and eventually this can be paired with and then superseded by adult praise. They just need that extra step of help.

ABA is about normalising 

Another criticism, similar to above is that ABA is used to teach skills to make them more like NTs so that they can navigate the world on NT terms, when instead we should be changing the world to accept people with autism. Understanding about behaviour means that you can use behavioural principles to reinforce behaviours we want to see more of and reduce those we do not. There is concern from autistics that NTs are using their understanding of behaviours to force autistics to override their own instincts and suppress their fears in order to avoid punishments, or in order to be reinforced. A misunderstanding of ABA is often that absence of reinforcements are punishments, but this is no more true than a teacher not saying ‘well done’ is a punishment.

But there certainly are ethical questions to be asked about WHAT is taught. Should eye contact be taught? (There is broad agreement that it should not, but have you ever tried ordering a drink at a busy bar without it? I guess one solution is to have a bar ‘end’ that was autism friendly perhaps.) Should choice be taught? Should non-vocal be taught how to verbalise? Should a reluctant writer be taught to use a pencil. These are ethical questions yes, but actually have very little to do with the methodology used. If you decide it ought to be taught you’d just simply go for the most effective way.

To an extent all models of education are still about normalising, or at least about standardising. All children need to learn to follow the rules of a school in order to be effectively taught in those environments, and some will find that easier than others. In my opinion reasonable adjustments should have mental well-being at the heart, not low expectations or excuses.

No Excuses

Another backlash against behaviourism is because of the recent media reports of schools with zero excuses and strict behavioural models who align traditional education with behaviourism. However, I do not see much behaviourism in their approaches, only control. Behavioural interventions need to be about individuals, not whole school conformity. So consideration of what will reinforce a particular student’s learning behaviours so they can get closer to their goals of independence, self-study, confidence speaking out loud, comprehension understanding etc. If you insist on tracking the teacher with your eyes you need to take data on the effectiveness of that on the learning outcome and the mental well-being of the individual learner. Whole school behavioural policies can appear to be more for the benefit of the teachers than the kids.

ABA and LAs

As young children learn exponentially, there is a lot of pressure on families to find some form of effective early intervention before gaps widen between their children and their peers. In the UK very little is offered that has any evidence base for teaching skills, nor commits much in terms of hours or parental training at the very time post diagnosis when parents are most motivated to act, but ABA does. Unfortunately, LAs can find it convenient to listen to the concerns raised above and in many cases reinforce the behaviours of those raising them through promotion until they have become quite authoritarian on the topic and hold positions of power and influence.

SENDIST almost always find in favour of ABA when it reaches that stage but parents have had to usually fund it for some considerable amount of time themselves, in order to evidence that it works for their individual child. This is not necessarily because it doesn’t work for ‘some’ children, but because the particular set up for their child’s programme is individual and based on what the parents can resource. They don’t request ABA in general, they request a particular version, with a particular number of hours etc. that they can produce the evidence for. As a result of these win’s, LAs are then often faced with considerable costs. A programme of learning for one child may reach 40 hours a week with a number of tutors, a supervisor and a consultant, and run 52 weeks of the year. Often though parents start out asking for just 12 hours in term time, or simply for a BCBA to oversee their child’s TA,  but as the battle grows and evidence is generated it gets much bigger. But ABA itself isn’t a programme. Direct Instruction, Precision Teaching, PECs etc all come under the science of ABA, as can reward charts, Functional Behavioural Analysis, ABC assessments if conducted by people who understand what they are doing.

Some LAs are starting to acknowledging the fact that they need to develop a strategy. Richmond has a mainstream school with an ABA unit attached. Essex and Thurrock and Reading all have maintained schools which use ABA methodology. Many Independent Specialist schools have Board Certified Behavioural Analysts (BCBA) on their staff. Eagle House, Beyond Autism (aka Rainbow), Treehouse, Jigsaw, Snowflake and both Southwark’s Head of Autism outreach and Head of Communication and Language are BCBAs, and Newham is now developing in-borough provision through their EP service.

However, Local Authorities are often reluctant to promote or advertise any forms of ABA, even when models exist to show that it can be provided with better outcomes for lower cost, as they suffer from the same competition laws that govern schools. If they are seen to be providing good quality provision, or provision that families want for their children with SEND, they risk becoming the national or London provider as desperate families will often move to access it. This creates a very hostile stance towards parents seeking it and an incentive to perpetuate as many myths as possible to deny it.

Conversely, this seems to be occurring at a time when CAHMS are under extreme pressure to not medicate for ADHD, and in some cases not to diagnose, whilst looking to their Education Colleagues to provide positive behavioural support strategies (recommended by NICE) in which they have not been trained, leaving children without either medication or effective behavioural management provision which is likely to trigger increasing applications for EHCPs and TA support.

Regulation

As from above it is fairly clear that only parents who are both wealthy and desperate are able to access ABA for their children. Whilst in the US, ABA practitioners are plentiful, extensively trained and paid at similar rate to TAs in the UK, here they charge up to around £30 an hour for very little training and experience. BCBAs are often expected in the US to have completed up to 5 years of clinical experience post qualification before they can become a supervisor, let alone a Consultant. Here, many become Consultants as soon as they receive their BCBA certificates. Parents are at the mercy of what is available (Which is of variable and often questionable quality) and what they are charged. Until Educationalists and LAs start to pay attention, develop in-house skills and learn about what it can offer and stop fudging kids provision with ‘eclectic’ which appears to mean unspecified, unmeasurable, unaccountable provision that they make up according to what they want to do whilst blaming lack of progress on the child, then children who have very real potential will be failed both by the state, and by ABA practitioners of dubious quality. I notice in the Journal from the College or Teaching entitled ‘The science of Learning’ there was no mention at all of ABA.

Finally

Finally, many good schools do use ABA in their provision (through both trial and error and system design), often without realising it, or knowing that is what they are doing, and with subsequent good impact. Many Special Schools who will tell you they don’t agree with ABA but use PECS to enable children to communicate for example. Many mainstream schools use reward charts/pegs, marbles in a jar to reinforce behaviours, which mean they agree with the concept in principle but somehow feel it is abusive to differentiate for a child with autism and give them individual reinforcement that is meaningful to them when marbles are not. I’m pleased there is a movement now for more critical thinking in teaching and I hope that we can move on from a blind acceptance that behaviourism is somehow ‘how we used to live’ and I hope when we do, there is quality Supervision and Training for delivery.

Footnote: If you’d like to see an example of how ABA ought to work in practice and the refusal of that request simply because it was recognised as ABA, see previous blog: ‘Consultative SALT‘.

Spectrum Sunday

 

Consultative SALT

When Kipper (diagnosed with ASD) was in Nursery we were told that a Consultative model of Speech and Language Therapy was the gold standard. Nevertheless as a result of a lost tribunal where provision was thrown at him in an attempt to head off any consideration of a personal budget for what we knew worked, Kipper received weekly direct therapy for an hour a week as well as full-time 1:1 TA support. It’s not what we wanted. This is what we wanted:

Kipper had a very keen interest in fruit at the time and it was our wish that he could hand out the fruit at snack time to practise the conversation skills of turn-taking, listening and responding. We wanted him to be supported to ask each child what they would like, listen to their response and hand them their chosen fruit. Kipper had none of these skills at that point but evidence had showed that with support he could learn this quickly. This would give him 30 opportunities to practice a day and the task would hold his attention due to his special interest. He would be able to practise fluency and as his skills developed he could learn additional skills such as greeting peers by name, or varying his language.

Should he become bored or distracted, a well-trained TA could note his particular excitement about bananas and have the children known for choosing them placed in the line spaced to keep the interest going.

It was our wish that once he had mastered this skill with fruit he could move onto handing out pencils or coloured paper or even playground equipment. This would not only give him many opportunities to practice and become fluent in interactions with peers, but increase his peer esteem as the ‘giver of things’ and establish their habits include asking him for things outside of the therapy tasks, to help him generalise his skills of conversation.

But our request was met with a sigh, and an agreement that he could give out one piece of fruit a day, creating for him the possibility to learn in a month (which was unlikely due to the slow pace and lack of fluency expectation), what he could have learned in one day. His TA instead of supporting him would stand well back, trying to enable him to somehow develop independence and peer interaction all by himself, taking him once a week to a SALT direct therapy session where the Therapist would scroll though different board games to try to get him interested enough to take his turn with her which was slow and ineffective mostly.

The nursery was unwilling to listen to us, or to our suggestions which were modest. We only went to tribunal because we knew we would be ignored by them and so wanted a Consulting professional who would be credible with them funded to oversee his learning in the way we knew he needed.

What progress he could have made if they’d listened!

 

 

 

 

 

A poem by Jayne Dillon – Guest post

SEND Accountability in force (bedding in), by Jayne Dillon

Me Please Assess my child
LA Fuck off! Kiddo don’t meet our dodgy criteria
Me Tribunal

LA ok, we will assess but it’ll be the shittiest, most minimal assessment we can manage. With a few hints at bad parenting for good measure. Then we will refuse to issue a Statement
Me Tribunal

LA ok, have a bloody Statement but it will be seriously crap
Me Tribunal

LA whatevs! We’ve wasted a couple of years, you can have your wording now
Transfer to EHCP

LA I know, pretend we haven’t sorted out the secondary school so we miss the 15 Feb deadline!
Me Judicial Review

LA let’s outsource this Plan! That’ll sort ‘em. It’ll be suitably shit! Let’s remove pretty much all support and provision
Me Tribunal

LA ffs! Let’s drag it out until the last minute. Just to be bastard annoying! We will concede eventually
Emergency Annual Review

LA ok, we will agree to stuff but we won’t put in the Plan properly.
Me Rewrites the Plan

LA removes support by changing wording
Me FFS

TBC………

 

Did you see my tweets today? Did you see my tears?

As another Council for Disabled Conference passes, and another day of frustrated tweets trying to ensure parents are remembered, for me it was another day in tears as yet still, after all this time there seems so little hope of making progress against the sheer distance that families still to go for a voice, for change, for improvements.

As I receive response after response suggesting these conferences, (despite being run by an organisation who claim to be FOR Disabled Children) are for professionals, and that there are other avenues for ‘help’ for parents. I wonder what it takes to shift the understanding that is needed to recognise that parents as a group do not need help. They know the answers to so many of the difficulties in SEND provision. They just need to be allowed to give them.

I am told yet again, that if parents want a voice they must join a Parent Carer Forum (PCF) who will feed into the process and policy. But my PCF does not have a voice. They do have committed people working hard to be heard, but I do not see them listened to. What I see is that their funding relies on the Local Authority to agree and therefore their very existence is controlled by them, and who then by default get to choose who can run them, and how those parent voices may take shape.

Members in the audience today showed an alarming level of experience of SENDIST tribunals. If those attending today were professionals the chances are very likely that their experiences were almost entirely against parental appeals. The absence of parents today in such circumstances continues to drive a wedge and ‘them and us’ feel to the Reforms. To have them there would have been humanising.

Being excluded from the conversations between professionals is deeply upsetting, and being signposted to a Local Authority-monitored feedback vehicle as the only method of contributing is not only patronising but fundamentally against the principles of co-production and Section 19 of the Children and Families Act 2014.

 

Parenting with two wheels: A moral dilemma

mini-kick-scooter

My 5 year old, Blest, as the youngest of three, is often required to accompany the chaperoning of the two older two. On Wednesdays he must be collected from school, travel home on foot to meet my Kipper’s SEN Taxi which arrives 10 minutes after we arrive home, and then, within the next 10 minutes accompany me back to his school to pick up his sister Kitty from her after school activity. This is usually not done without a fuss, and who could blame him, especially when the weather is bad?

Wheel one:

After waving off Kipper, Kitty and Blest scoot to school and leave their scooters at the school gates. At school pick up time I collect Blest who picks up his scooter and we set off home to meet Kipper. 5 minutes later I ask Blest to put on his shoes. He refuses. ‘Not again, I don’t want to go back to school’. I didn’t either to be fair, it was absolutely tipping it down. After repeated demands he throws his shoes at Kipper who is laughing at him. I collect the shoes and put them on his feet whilst he is kicking out. He then refuses to get up off the floor and walk. We are by then fairly late for collecting Kitty.

I manage to get him up but he refuses to walk, shuffling along and screaming out when Kipper ‘looks at him’. I ask him to please use his scooter as we are now significantly late but he walks past it and I take his hand and literally drag him to the school crying and deliberately splashing in puddles. When we arrive, Kitty is the last one standing by her teacher, (who is demonstrating her annoyance by hugging herself in her cardigan and dramatically dodging the drops from the small shelter she is standing under). Blest is further angered to realise that Kitty has her scooter now, and he does not. This misery extends into the evening and turns into rows about dinner and bedtime. How I hated Wednesdays. End.

Wheel two:

After waving Kipper off, Kitty and Blest walk to school without their scooters. Going to school is an established routine and neither child complains about it. Sometimes we take scooters, and sometimes we do not. Wednesdays we do not. It is raining again.

At school pick up time I collect Blest and we walk home to meet Kipper. Again this is an almost daily affair and it happens independently of scooter accompaniment. He asks me if I have brought his scooter but I tell him I haven’t. This is a regular, though not consistent answer. He accepts without a fuss and we get home in time to meet Kipper’s taxi.

10 minutes later I ask him to put his shoes on to go and collect Kitty. He complains but I tell him he can go by scooter. ‘Yes’ he shouts and punches the air. His shoes are put on eagerly and, though again it is raining, we are at school with time to spare. I carried Kitty’s scooter there and they both scoot home together happily. Evening is peaceful. End.

These are both true stories but what are the ethical and moral questions within them? Should I have restricted access to the preferred transport method (scooter) in the morning the way I did in ‘Wheel two’ in order to improve the chances of meeting a goal I had for the evening? Which version has the happier child? Which version has the happier adults (parent and teacher)? Should I been more of a disciplinarian in ‘Wheel One’ and delivered serious consequences for shoe-throwing or walking slowly? Should I have told the teacher to stop being so dramatic and understand that we are late because Blest is only 5 and can’t help it? Should I have cancelled Kitty’s after school club or found a babysitter for Blest rather than restrict the scooter in the morning?

Would appreciate your thoughts or comments.