#Curriculum, #Teaching&Learning, Early Career Framework, Parenting, SEND

Meeting Jonathan!

By Anita Devi

Last month, I had the absolute privilege of meeting Jonathan Bryan !!! I’d been following Jonathan’s story for awhile on Twitter @eyecantalk and in the press.  I’d read his book, which I highly recommend, so I wanted to meet him and his mum, Chantal.  I had so many questions.

This blog is my attempt at summarising an incredible three hours spent with Jonathan, at his home.

Dual Multiple Exceptionality (DME)

My interest in children and young people, who had special educational needs and were more able started around 2007.  Working with different agencies including the National Association of Gifted Children (now Potential Plus), I was keen to find out how we identify and encourage the ‘ability’ in ‘disability.  I researched case studies from America (where DME is referred to as Twice Exceptional or 2E), I delivered a few presentations/ workshops and more importantly, I incorporated it into my practice as a SEN Advisory Teacher, undertaking statutory assessment. Around the same time, The National Strategies also launched their thinking around DME.  The discussion was beginning to develop momentum. We were starting to distinguish between identification and support strategies for those born with a disability, who had DME and those who had acquired a disability, after the more able aspect of their talent had been discovered e.g. Professor Stephen Hawking or Jean-Dominique Bauby (Diving Bell and the Butterfly).  Three years on and post-election, the signs in Whitehall had changed, as had the government agenda for education.  DME was put on the back burner.

Despite this setback, I continued to research the subject.  My interest homed in particularly on assessment, especially since ‘Life without Levels’ and the Engagement Profile / Scale research by Barry Carpenter and his team, was a great opportunity to further this discussion in special schools with head teachers.

Almost 10 years after I first started looking into DME, Pearson published a two-part blog by me on the subject.  The article was entitled, “What can’t my child excel and have a difficulty / disability at the same time?” Part 1 | Part 2.  Eighteen months later, nasen published their Current State of Play Report on DME.  Professor Stephen Hawking became a Patron of nasen, however as mentioned earlier, his was an acquired disability.  There is still much to discover about children born with a disability, who are cognitively able, but not always endowed with the ability to express it.

I do not want to give away too much about Jonathan’s story, as I really would encourage you to read his book.  Through ‘Eye Can Write‘, I met Chantal his mother, understood the circumstances leading up to his birth and the many difficulties they faced after he was born, including times when the hospital gave Jonathan hours to live.

Eyes Can Write

Jonathan is now 13 years old.  He has no voluntary control over his body or speech, and he is on an oxygen tank.  He has two younger sisters and a very busy schedule.  Jonathan was attending a school for children with Profound and Multiple Learning Difficulties (PMLD), when one of his teachers noticed active cognitive processing, behind his disability.  Long story short, Jonathan moved into mainstream, learnt to read, communicate in his own way and thrived.

Here is a reverse poem, he wrote recently for Poetry Day (21st March 2019).  Using the structure of an existing poem, Jonathan created his own, giving a voice to his thoughts and ideas.

Poem v2

So, what happened when I met Jonathan?

My first question was to Chantal.  Given all that has happened and the challenges, how is it you remain so calm?   Smilingly Chantal replied,

There are days, when the oxygen masks haven’t arrived or something else isn’t in place … and it can be overwhelming.  But I have a choice and I intentionally choose not to be angry.  It isn’t always easy, but the anger doesn’t solve anything.  If anything, it creates more problems.

Chantal, his home-teacher (Sarah) and I continued talking about many things … at which point Jonathan interrupted us.  Using his eyes, he spelt out the following message to me,

I just want an education system where we are all considered worthy to be taught and learn.  How can I make a difference, Anita?

Yes, he knew my name!  Part of my curiosity about Jonathan also stemmed from his phenomenal working memory.  Imagine using your eyes to point to a letter in a word, a word in a sentence, a sentence in a paragraph and a paragraph in a context/ chapter.  That’s what Jonathan had just done!

Reflecting on the discussion, I realised, we had been talking about provision in special schools and sensorial experiences.  Whilst these are necessary and helpful, Jonathan was trying to communicate to me … there is SO much more to us that just ‘experiencing’ a sensory stimulation or curriculum.

So, let me share some more golden nuggets, Jonathan spelt out to me, with his eyes:

I would love that if people see what is possible, maybe they will want to try and unlock others.

My story is not unique, and it should be shared.  I don’t have long here, so what should I spend my time doing?  I am a thirteen-year-old … and I’m always hungry!

I dream of every teacher finding ways to teach every child.

… and finally,

  • Trainee teachers need the why
  • Teachers need the how
  • Parents need the what
  • Leaders need to believe

What an incredible blueprint for teacher – leader development and the Early Career Framework.  I have no idea how the time passed … we covered so much.  But it was noon and Jonathan had to get ready for school.  As I drove away from their home … I was in awe.  This young thirteen-year-old had taught me SO much!  He had understood what we had discussed and responded in a way, that stretched our perceptions to a new level of thinking and believing.  What an absolute privilege! I was inspired and humbled.

JR Photo Medley v2

Jonathan and his family have set up a charity to focus exactly on what we spoke about, unlocking potential.  The charity is called ‘Teach us too’ and the remit is simply ‘to change the experiences of others in a similar position’.  There are some great plans for the charity to develop over the next year and #TeamADL very much look forward to walking alongside Jonathan and the charity in advocating the message “Teach us Too”.

Call to action:

Think about the children and young people you teach:

  • Are there any who have a special educational need and/or disability AND are more able?
  • What further research do you need to undertake about DME?
  • Does you setting have a policy and more importantly provision in place to ‘unlock’ and support DME?

 

About Anita Devi

Anita has had an extensive career in education.  Her why is based around the ‘joy of learning’.  As such, she focuses on what enables learners and what hinders them and more importantly, what can she do to improve the system.  Amongst many other roles, Anita leads #TeamADL

To find out more visit www.AnitaDevi.com

SEND

SEND: We need to learn to synthesise information better!

By Anita Devi

Over the last two months, I have doing more in-depth work on the ‘Four Broad Areas of Need’.  This has included training, talking to parents, writing, working with leaders in a variety of roles and I’ve been looking at the quality of Education Health Care Plans (EHCPs).  In this blog, I seek to raise some of the unanswered questions, that I think is hindering the effectiveness of the SEND Reforms being realised.  This is not a fait accompli piece, just a few current thoughts.

I have already contributed some of my thoughts to the current #SENDInquiry Here I specifically wish to focus on how needs are synthesised to form a holistic picture of the child or young person.

The construct ‘Areas of Need’ (a legacy of the SEN Code of Practice 2001), I believe evolved from the shift in thinking from a medical model to a social model of disability in the 1970s.  However, it probably become more relevant when considering data analysis of need.  The SEND Reforms (2011-2018) saw a shift in emphasis in one area of need; from behaviour, emotional and social development (BESD) to social, emotional mental health (SEMH). These ‘areas of need’ are not directly referenced in the primary statutory legislation (The SEND Regulations / Children & Families Act 2014). However, they are discussed in the secondary statutory instrument, known as The 0-25 years SEND Code of Practice (2015), SENDCoP hereafter.

My own interest in the ‘Four Areas of Need’ and working with settings on this, since the SENDCoP was originally published in 2014, was triggered by 6.25, which states,

When reviewing and managing special educational provision the broad areas of need and support outlined from 6.28 below may be helpful, and schools should review how well equipped they are to provide support across these areas.”

At this point, I’m sure many colleagues may possibly think, ‘Oh she’s talking about Provision Mapping, Provision Management or SEND Reviews’.  I’m not, though there is some overlap.  For me, 6.25 goes further than just a review.  It’s about strategic leadership that is supported by a depth of knowledge and resources in all four areas.  It’s an understanding of holistic educational provision.

The second nudge for me came from The Rochford Review 2016 (Recommendation 3):

“Schools assess pupils’ development in all 4 areas of need outlined in the SEND Code of Practice, but statutory assessment for pupils who are not engaged in subject-specific learning should be limited to the area of cognition and learning.”

Hence began my work with a wide range of stakeholders on:

  • How well do settings / local areas assess in the four areas of need?
  • How well resourced are they to support the four areas of need?

The conversations have been varying and some dovetailed into work I undertook with local authorities on developing a ‘Written Statement of Action’, enhancing consistency of decision making for Educational Health Care Assessment (EHCAs) and EHCPs, as well looking at the quality of Assessment Advices that contribute to an EHCP.  Since 2011, working with Pathfinders and others, I’ve been in involved in numerous quality assurance (QA) activities on EHCPs; with a vision to see how this can be included as part of the 20-week cycle, not after the plan has been issued and agreed.  Other #TeamADL members are also looking at the QA process of EHCPs.  Sadly, I have yet to see a gold standard EHCP or see a system that embraces a QA process, as part of the 20-week cycle.  This has made me question several things.

Under the previous system, Statements were assessed and issued in a 26-week cycle.   We struggled to QA fully then, often taking just a random sample of cases.  What made us think, we could improve the quality of plans in a shorter time?  In pursuing speed, have we compromised further on quality?  The 20-week cycle is enshrined in law, but it is certainly something we need to consider.  Would families be happier with a slightly longer timeline, knowing that at the end of it, they would get a better quality plan that has been quality assured?

Back to ‘Areas of Need’. As a previous SEND Advisory Teacher, who use to undertake statutory assessment and sit on Panel, I recall how much time and thought I had to put into evaluating the diverse and what sometimes appeared contradictory evidence to truly narrow in on need and identify what was required in terms of support.  In reflecting on support, I also had to consider, whether the proposed intervention was long-term or short-term.  Was it to develop an adaptation independence skill (e.g. social stories on safety) or move a child or young person on to the next point, or indeed, was it something needed long-term (e.g. visualiser)? Since the SEND Reforms, these are not questions, I see colleagues asking and I genuinely feel we should.  Implementing short-term support, does not take away from the need of the child.  Instead, if accurate and appropriate, it provides a way of managing and supporting needs through inclusive practice.

Four Areas of Need

Prior to this role as an Advisory Teacher, I led SEN in a school, as a SENCO.  I was never keen on discussions about primary need or secondary need.  I insisted my team saw the four areas of need as a Venn Diagram.  So, we discussed overlaps, consequential needs etc.  The conversations amongst us as a team and with families were far more constructive.  Our approach rippled out to any external specialists commissioned for their input.  What this meant was we started see coherent and strategic multi-agency working.  On many occasions, in my SEND Advisory role, I recall undertaking joint observations assessments with members of other teams.  When we saw OT waiting lists were not being met, across local authority teams we worked on up-skilling setting staff on universal & targeted provision for co-ordination difficulties.  The impact – waiting lists went down and children’s needs were met in a timely manner.  Imagine that change model with mental health and CAMHS!  This is one of the many visions behind #TeamADL and the work we do in #MentalHealth

A carer recently said to me,

“When we were struggling with two boys with severe attachment issues, we had conflicting advice from social workers, psychologists, and others.   We worked a lot out for ourselves which meant sourcing and reviewing a lot of information ourselves.  We are a lot more therapeutic with our practice now, but even now there are those who don’t understand or agree with how we approach things. Many different voices, plus of course every child is a total individual, so therapies may or may not work with them. I love the multi-agency approach, but I suppose a lot of ongoing cooperation and flexibility is required.”

So, what next?

I think national changes in assessment and curriculum do give schools more autonomy and flexibility to be inclusive.  However, settings and practitioners need to give more thought to synthesising information and seeing the ‘whole’ child, as they progress into being ‘whole’ adults too.  I have always encouraged settings to align their vision / mission statement to the principles of the SENDCoP (p19, Section 19 CfA).  However, we now have a mandate to align these principles (which are universal and apply to all children/families) to the ‘intent’ and ‘implementation’ of any curriculum we deliver.

The second item on my wish list: I’d like to see those who write Assessment Advices and those who use them to write EHCPs become more intentional in how they synthesise information.  Demonstrating joint-up thinking in practice and provision. Considering the child, as a whole.  This takes skill and I do feel more training is required in this area.

Finally, I would like to see a more robust approach, at local authority level regarding how quality assurance can be brought into the system.  Not as an after-thought, but as part of the process.  This may involve changes in the law and extending the timeline.

To conclude the SEND CoP (6.27) is clear: (underline added)

These four broad areas give an overview of the range of needs that should be planned for. The purpose of identification is to work out what action the school needs to take, not to fit a pupil into a category. In practice, individual children or young people often have needs that cut across all these areas and their needs may change over time. For instance, speech, language and communication needs can also be a feature of a number of other areas of SEN, and children and young people with an Autistic Spectrum Disorder (ASD) may have needs across all areas, including particular sensory requirements. A detailed assessment of need should ensure that the full range of an individual’s needs is identified, not simply the primary need. The support provided to an individual should always be based on a full understanding of their particular strengths and needs and seek to address them all using well-evidenced interventions targeted at their areas of difficulty and where necessary specialist equipment or software.”

We, therefore, have the responsibility to make this a reality.

Postscript:  It is my intention to share further thoughts on ‘well-evidence’ interventions at a later date.  For now, if you are interested in finding out on what we are doing around the ‘Four Areas of Need’ – do get in touch.  As I shared, we have other members of #TeamADL also involved in the QA of EHCPs.

About Anita Devi

Anita has had an extensive career in education.  Her why is based around the ‘Joy of Learning’.  As such, she focuses on what enables learners and what hinders them and more importantly, what can she do to improve the system.  Amongst her many other roles, Anita leads #TeamADL

To find out more visit www.AnitaDevi.com