Musical Kipper

chords sheet on piano tiles

My son, Kipper, as his Grandad use to call him, was diagnosed at age 2 with moderate-severe ASD. By the age of 12, he had collected additional diagnoses of Expressive Language Disorder, Dyslexia and ADHD, and had attended no less than 9 educational placements including a period of home education.

His pre-school years were very difficult, as we adjusted as a family and attempted to identify strengths we could work with to enable him and us a quality of life. Spotting early on when approaching friends houses with musical doorbells, that he could sing the tune in the identical key it was subsequently played in, and that he would hum along loudly to the pitch of bus engines as they changed with the speed we travelled, we decided to try some music therapy. Other therapies prior had been abandoned as therapists was never able to engage Kipper to receive it.

Music Therapy was different

Music therapy was different. Through the rhythm and sounds Kipper became increasing interested, and began at a very basic level to take turns, fill in the musical gaps that were deliberately left open for him to, and to learn how to wait and to share. Sadly, the therapy was limited in availability, but it did show us how powerful music could be, and when he reached an appropriate age, we arranged for him to have both Violin and then piano lessons with our local Local Authority Music Service. Sadly, though cheaper than other options, only available to those who have available or can prioritise finances.

At first, as a parent, I found this a bit stressful to arrange. Kipper needed quite specific ways of teaching to ensure he attended to instructions and understood what was expected, and he had already by then attended a number of school placements. However, I found the Music Service sensitive to my concerns and I was supported to communicate directly with the teachers, who I was reassured were considered carefully for their ability to work with me and Kipper in this way.

Fairly quickly Kipper successfully progressed and became good enough to join the Music Service Orchestra, whose conductor and staff were also willing to make the reasonable adjustments I requested to make it accessible. For example, I observed at one time that Kipper was calling out regularly, expressing impatience when other sections were asked to play, and also disrupting some of the other players. I designed a tick-sheet for him of tasks he could engage in at those times to avoid being disruptive, and the conductor agreed to refer him to it until it became an established habit and the sheet was no longer needed. This happened fairly quickly.

song, music, poetry and art

At just age 8, Kipper was moved to his 8th Educational placement in a resource unit attached to a mainstream Local Authority school. This school was especially well-known for both its specialist knowledge with regards to behavioural analysis, but also its considerable commitment to the arts, especially music. Starting this school with no concept of history or time-lines, few connectives or conjunctions in his spoken or written language, I was surprised how keen they were to include him in mainstream topic work and history. But through the combination of song, music, poetry, and art, he has developed not only an in-depth knowledge of Native American History, but a good understanding of the concept of history itself, which later enabled him to participate successfully in their topic of Tudors (Also supported in school with music) and to produce a timeline on our dining room wall from his own research.

Socially, Kipper’s difficulties can mean he has reduced motivation to attend to learning opportunities outside of his limited interests, and that means not easily developing an awareness of cultural and social topics as well as vocabulary that can support his inclusion amongst his peers. Our confidence that the Music Service knew him well and could work with us meant he was able to join their new Glee choir which introduced him to popular current music and bands. Recognising song played on the radio that he knew well, triggered his interest enough for him to learn the words to other songs, which has supported him a little with social interaction and acceptance.

His school were a great support in helping this dream come true

From the skills learned through participation in the Glee Choir (such as following direction, standing to sing, facing the audience, singing loudly, not fidgeting), Kipper successfully passed the audition and trial to become a member of a local Children’s Chorus, whose standard is high enough to be able to supply children for high profile Operas in London and recordings for well-known pop stars. His own opportunities have been to sing in churches, theatres and The Royal Albert Hall, which was a huge deal to him given his special interest in London Buildings. His school were a great support in helping this dream come true, by practising with him coping strategies for the sensory environment, and the choir dedicated a member of staff to oversee his needs. Since then he has sung with the choir at The Royal Albert Hall twice more but without needing any support.

As a member of his school orchestra, Kipper progressed from the back row sitting next to a Teaching Assistant, to Leader of the Orchestra without support in just 2 years. The importance of music within this school meant the orchestra performed on many occasions, and the Leader of the Orchestra was expected to come forward at the beginning of each performance to the applause of the audience. Not only did this develop Kipper’s confidence, but it raised his profile with his school peers, enabling him to be respected, protecting him somewhat from bullying due to his differences.

He once tuned a whole guitar a semi-tone out for his own amusement

This is also true when Kipper has attended various youth camps. Playing along to camp songs or daytime singing sessions, or simply performing when there has been an opportunity to, has enabled him to hold some regard, even when he might make a loud and confusing request of the singers that they don’t sing the next one in Eb major. He has also often been called upon to help tune instruments when electric or internet tuners aren’t accessible (though he once deliberately tuned a whole guitar a semi-tone out for his own amusement so do be careful if you use his services).

Kipper’s Secondary school, his 9th and hopefully last educational placement before 16, is too small to host an orchestra, but his skills on the piano are already being used well for their Christmas performance being shown the day after he takes his grade 5. Considered the equivalent of a GCSE, this grade will provide UCAS points he could well benefit from should he continue to progress at the phenomenal rate he has so far, and a rate that far exceeds the trajectory we were given when he received his diagnosis at just 2.

In February, Kipper will be auditioning to become a member of a National Youth Group. This audition is by invitation, from having been noticed for his ability and commitment in youth scratch bands at a couple of music events recently. If he passes, it will give him opportunities to perform nationally, occasionally internationally, and to form relationships based on shared interests.

We see the potential for a network of support and a quality of life that is not now solely dependent on us

Like most parents of children with the kinds of disabilities Kipper has, worrying about his future can keep us awake at night. The world is a confusing place and the ability for someone like Kipper to get into trouble unintentionally and without understanding why, are enormous. However, as we watch how music has enabled Kipper to develop so many skills, to participate, practice and enjoy what might have been otherwise aversive experiences, to develop peer groups who might not seek out his company for gossip or social events but who respect him for what he can contribute musically, we see the potential for a network of support and a quality of life, that is not now solely dependent on us or when we are gone, the social care system.

Music education is not an extra or a luxury. Like art, sport, outdoor learning and the other school subjects at risk, music education is an essential element for independence, inclusive practice and social cohesion. 

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Insight: ADHD medication day 1

Copied with permission from sibyllinejournal

woman birds

Starting on a low-ish dose of 30mg of lisdexamfetamine for the first week, I was expecting very little effect. Despite it being recommended that I eat something either with or soon after and take with water, I took it with my first cup of tea of the day and without food at 7:15am. I guess us ADHD people like to do things our own way.

By 8:15am I had resigned myself to the fact that I wasn’t going to notice anything different but by 8:30am, things were suddenly different. And it was a bit of a jolt.  What I often visualise as concentrated glucose syrup feel running through my arms making me jittery and panicky as I prepare for the school drop off for two of my children with all the things I must remember, or remember that I don’t need to remember or whatever, well it just went. Just like that. And I suddenly thought I ought to eat so I did. And I felt I had time to.

At 8:45am my 6 year old pointed out that his jumper had a stain on it, and so I took it off him and headed upstairs for another, picking up a pile of clothes I passed on the way and depositing them in the right room. As I left the room to head back downstairs my brain remembered the school jumper I had set off for. This was such a surprise! I would have remembered when I had spotted my waiting son of course, but then had to go back upstairs. It was like I had 3 seconds added onto my thinking to enable me to remember before I made a mistake.

Whilst I was upstairs, my 10yr old daughter was bouncing a ping-pong ball in the hall, and this kind of thing can infuriate me, particularly when I am trying to think and get out of the house on time as it can be so distracting. Out of habit I opened my mouth to reprimand her but then realised that I actually didn’t mind at all. Nor did it bother me that my 6 year old had created piece of art with crocs on the stairs which I had to step over. Artwork that in my head would have to be added to my already oversubscribed to-do list and which would normally have me believe would set me back an hour to rectify.

crocs 1

Anyway, the kids had all the things they needed on time, but were actually a couple of minutes late for school because I had been delayed trying to get a picture of crocs on stairs because it not bothering me it was such an unusual concept.

Just wasn’t important or interesting enough to do until it was urgent

After drop-off I had to head into town to get some shin pads and school logo PE bottoms for eldest for the next day. I had left it until the last minute because buying shin-pads and trousers just wasn’t important or interesting enough to do until it was urgent. I wanted to get a watermelon too for a creative project that was in my head for, yes, the next day.

As I got close to town I had to think again what I needed to do, but I remembered quickly as well as the order I was going to do it in. And then from nowhere I decided that I would like to buy some flowers. It wasn’t in the plan and it nearly diverted me from the boring sports shop I was about to enter, but it didn’t. Again, I had 3 extra seconds to adjust my thinking. I decided I didn’t need flowers after all.

Anyhow, it turns out that that this brand of sports shop is the perfect place to test the effect or otherwise of ADHD medication. Shin pads were in all different places throughout the shop in sizes that didn’t map on easily to children’s ages and the staff who were invisible took a long time to arrive when called for. As it happens, when the shop assistant did turn up, he was very helpful, but I doubt I would have lasted that long ordinarily. However, I did notice that the process caused some of the concentrated glucose syrup to creep back into my arms, and as I left the shop, quickly checking my emails to find a workshop I wanted to go on tomorrow had no spaces because I booked it at the last minute, I felt even more glucose, and became irritated, but still I kept going to the department store for the bottoms.

I was surprised I had recovered so quickly from them, and actually I didn’t really mind waiting

The bottoms were not on display which meant asking the person on the desk to retrieve them from the stock room. I was surprised how easy this was to go through with. Ordinarily I would have considered my son’s wardrobe for a suitable substitute without the logo and planned an apologetic email to his school, or insist he wears his shorts. Anything rather than have to rely on someone else and worse, wait for them, when I was so behind and so short of time. I probably would have eventually asked them, but I would have resented being made to wait and dreaded being put on the spot to make a decision about sizing when they returned. However, what the waiting did was give me time to realise that again, the glucose in my arms had completely gone again. I was surprised to notice that I had recovered so quickly from them, and actually I didn’t really mind waiting. It was kind of nice to. And the decision about sizing was pretty easy to commit to, not least because I didn’t feel I was too worried about returning an item that didn’t fit.

On the way out of the shop I passed an area that sold items my mum had asked for for Christmas. She hadn’t asked for Designer but they were nice if a little pricey. Normally I would have hung about for ages, trying to make a decision about whether the cost was justified and if I eventually did, would have become so exhausted by the process of decision-making that after picking it up, and getting cross I couldn’t immediately find the paydesk, I would have arrived to pay irritated to find there were two people in the queue with just one cashier and put it on the nearest shelf and walked out, spending way more money on postage later for a last minute online present my mum probably didn’t really want. This time I was able to make the decision quickly and leave the shop with it paid for.

Somehow, despite slowing down, ignoring short cuts and achieving all I had set out to, I’d also gained two hours

Remembering to get a watermelon, I headed towards the market, becoming disappointed when I found they didn’t have any. This would have normally been the end of my creative project as I would have given up gone straight to the bus-stop to get home quickly to ‘catch up’ due to time running out. Instead I felt able to walk home via a large supermarket where I picked up a Watermelon, checked in my head whether there was anything else I needed whilst there, paid and left. My usual behaviour would have almost certainly have been to wander around the aisles hoping something would trigger a memory whilst rewriting the plans for dinner several times. The glucose syrup arms came back as I realised I must have been out for hours and lost so much time it must be close to 1:30pm. Checking my phone it was a shock to see it was only just 11:30am. Somehow, despite slowing down, ignoring short cuts and achieving all I had set out to, I’d also gained two hours.

I can’t say I used those two hours all that well once home. Habits are habits and pretty ingrained. See here the croc situation at 3:30pm:

crocs 2

However, what I did do was eat well. A side effect of the medication is supposed to be suppressed appetite but instead of my usual day-time eating habits of grabbing a handful of nuts as I fly in and out of the kitchen in a hurry, a couple of digestives with butter on half an hour later, a packet of crisps and then possibly half a tub of clotted cream or something, I actually made myself a decent sized Greek salad as I felt I had time to.

After school I had to get my daughter to a club. She was suffering with a cold, but we were trying to catch a train so I was hurrying her and her brother. The train was cancelled and there was 20 minutes wait. It seemed, and was, perfectly possible for us to pop to a small supermarket to get her some Vaseline for her lips, some calpol and tissues in that time. I wouldn’t normally have risked it despite it being more than enough time, and because I would have struggled to remember what we had suddenly decided to buy which would have caused me stress. I had also for the first time ever remembered her phone AND a snack when I picked her up.

Everything slowed down to about half the speed of normal and I found it difficult to concentrate

On the way home however, at 5:30pm, I suddenly felt extremely tired and hungry though it didn’t feel as if the medication had worn off. In fact I didn’t ever notice it leaving me at all, and felt calm in the evening, but there was about an hour and a half of that and I ended up making dinner in a daze not entirely sure I would manage it. Everything slowed down to about half the speed of normal and I found it difficult to concentrate. It felt like it was 5am in the morning without having had sleep. But I did pick up again and by the time we were eating I felt okay. My daughter said to me on her way to bed ‘Thank you for remembering my phone, my snack and making me feel better!’.

I had a disturbed night but I think that was mostly because my daughter was struggling to sleep with her cold and kept waking me up to tell me.

I would talk six thousand pounds….

Increasingly I am hearing of schools prevented or delayed by Local Authorities from getting an Education, Health and Care Assessment for a child they believe needs one,  by insisting any requests must be accompanied by:

a) a demonstration the school has already spent £6k on that child and;

b) documented evidence of the Assess, Plan. Do, Review (APDR) Cycle over a number of terms (the number of terms varies across Local Authorities).

c) a recent report from an Educational Psychologist (This won’t be covered in this blog as I have written about this here).

There is nothing wrong with producing any of this as part of a request for an EHC Assessment and it can provide good evidence. However, none of this is required by law and schools can and often do have enough evidence for the child to meet the legal threshold for an assessment without the above. Insisting that schools provide evidence that is over and above what is required in law can delay the child from receiving their legal entitlement, interfere with Schools duty towards that child under the Equality Act 2010, can cost schools considerable but unnecessary sums of money, and prevent the child from accessing a specialist placement if required.

Under section 36 (8) of the Children and Families Act 2014, the Local Authority must consider whether the child or young person has or ‘may’ have special educational needs; and whether they ‘may’ need special educational provision to be made through an EHC Plan. There is nothing in law that requires spending of £6k to be demonstrated or information about the APDR cycle.

Under section 36(8) the Children and Families Act 2014, the local authority must secure an EHC needs assessment for the child or young person if, 

(a)the child or young person has or may have special educational needs, and

(b)it may be necessary for special educational provision to be made for the child or young person in accordance with an EHC plan.

If a school does wish to provide evidence of APDR, that can be helpful (though not legally necessary) but it is important to understand that it isn’t time-bound and it is possible to document a few cycles over just a couple of hours if it provides evidence enough for a child to meet the legal test for an EHC Assessment (for example where a child’s behaviour could make them at risk of exclusion). Similarly, if the school has already committed funds towards a child’s provision, this can submitted as evidence.

Increasingly many Local Authorities are insisting schools access some offered (paid for or free) support or provision before they will agree to assess for an EHCP for a child who qualifies for one. This is also unlawful. If the child or young person meets the legal test for an EHC Assessment, the Local Authority must carry out an assessment within 16 weeks of the initial request for that assessment. It is not lawful to put in provision instead of assessment (though there is nothing wrong with utilising this resource during the Assessment process or even having it specified in the EHCP if it meets a child’s assessed need).

Should there be a concern that the Local Authority is unsure of the law and will refuse a request for assessment if it doesn’t meet their own locally applied threshold, there are steps you can take to remind them of the process.

  1. Support an parental application for a request for an EHC Assessment. Either ask them to make it or provide them with the documentation to submit. Include a letter of support from the school.
  2. If the request is refused because the APDR documentation doesn’t meet the Local Authority standard, you haven’t demonstrated £6k spend or utilised free or paid support offered then support the parent in an appeal to SENDIST. This is purely a paperwork exercise and all that happens is the same paperwork that was sent to the LA is sent to SENDIST. Parents do not have to attend a hearing. Include a letter of support from the school.
  3. SENDIST order Local Authorities to assess for a EHCP in about 90% of parent appeals, but this is likely to be closer to 100% if the reason given is lack of £6k spend, missing APDR info or take-up of in-reach (which are not requirements in law) and the school sends a letter of support for the assessment request.

Of course at the end of an assessment the Local Authority may find that a plan is not necessary, and the school and parents will have to make a decision whether they agree with that decision or whether they ought to appeal again to SENDIST. However, at least you will have ensured that there has been a good assessment of need within weeks and not years, as is the child or young persons entitlement.

Further information on EHCP myths can be found here in a document produced by The SEND Organisations Information Groups who include: ACE Education; Contact; Downs Syndrome Association IASSN; IPSEA; NAS; NSCS; Kids; Network 81; SENSE; SOS-SEN. This blog refers to Myth 6 in this document.

A model letter for a parental requesting an EHCP Assessment can be found here.

 

(Disclaimer: I am not a legal professional and it is recommended that anything considered advice here is checked with a legal professional or one of the legal charities such as IPSEA or SOSEN or one of the organisations listed above)

Education Select Committee & Parent Voice

Tuesday morning whilst on buses and in cafés, taking my daughter to a Young Carer’s activity, and trying to keep her younger brother occupied, I was probably being one of those parents often criticised for ignoring their children whilst using their phone. I was trying to watch or at the very least listen to the Education Select Committee on SEND Reform.

money spent on the Reforms had at least partly been wasted

Now I have to declare up front, that I am a big fan of Matt Keer and his work. As is typical for him, he stuck to the facts and shared data and information that illustrated the points he wanted to make and only when pushed conceded more emotive points such as yes he felt the money spent on the Reforms had at least partly been wasted if culture change was the aim and that having to go through the SENDIST process had caused him incredible financial and emotional strain. I will come back to both of these points.

What struck me as particularly odd whilst I was watching, was why he had to do this work. I know him to be fully employed in a completed different industry, so why was he presenting data and information he admitted he’d had to glean from Freedom of Information requests and by bringing together data from different Government departments for comparison? Why was this information collection and monitoring not instead a part a the design of the SEND Reforms, (given how much money was provided for them)? The Government should already know what he shared, and it’s systematic collection over the past four years should have shaped the Reform development and implementation. Embedding will be impossible without it as people continue to argue over whose fault it is the Reforms are not working in the absence of any evidence (and they really according to The Guardian on 22nd Oct 2018). Scrutiny, auditing and accountability is what is really what is at fault here, but what about Culture?

They had money to change their ways of working, but they blew it!

Matt was quoted by Ben Bradley MP for Mansfield, Nottinghamshire, to have submitted as a part of his written evidence that ‘The SEND system is still incapable of channelling this funding in ways that meet needs lawfully. They had money to change their ways of working, but they blew it!’ Matt explained that he was referring to the approximately £600m given to Local Authorities to implement the reforms, and stated that  ‘And yet it appears that at ground and operational level, there appears to be very little change in the way Special Educational Needs Administration works.’ Matt then went on to express his surprise that that much money had been provided without ring-fencing or any meaningful effort to ascertain impact.

The Chair asked Matt if he was saying that this £600m was wasted. Matt answered with ‘If its initial ambition was to enable the process of change from one legal system to another and also, as I remember Edward Timpson saying at the time to enable a process of culture change that puts the child or young person with special educational needs at the heart of the process, yes, I would say, that money has probably been wasted.’

when we think we’ve got provision within the authority that we want to use and therefore the floodgates argument becomes a strong one

In part 2 of the proceedings the Chair asked two Local Authority representatives if they thought that a lot of money is wasted by councils in terms of tribunals and legal action. Dr Jackie Lown, Head of Children and Young People, East Riding of Yorkshire Council, responded with ‘Where the expense of the money that would be required to make a placement that the parent wants which might be an independent specialist provider, would take a great deal of money out of our system when we think we’ve got provision within the authority that we want to use and therefore the floodgates argument becomes a strong one’ (Italics my emphasis).

The questions that went through my head were; Where is the child’s needs in this statement? Why is there an implication that a parent ‘wants’ something, rather than a child ‘needing’ something. Why is it that an independent specialist provider ‘would’ take money out of the system any more than an in-house provider might, especially if that in-house provider cannot meet needs in a way that an independent might to lessen that child’s dependency on the system as an adult or later in their educational career? Why is a Local Authority forcing parents to tribunal because they ‘think’ they’ve got provision within the authority and why on earth must they force one family who is only interested in the life chances of their child to fight at tribunal for that chance as if they were fighting some giant war against the Local Authority on behalf of all families. They are not, and hurting families as if they were is cruel.

Further, it will be interesting to see if any of these claims are substantiated in the written evidence as I’m certain Matt’s will be, or as I suspect, this is another case so typical throughout the SEND Reforms and during the planning stage of parents or parent representatives bringing evidence that can be substantiated with sources for follow up and Local Authorities making unsubstantiated claims but not being asked to substantiate it and never will be.

parents rarely if at all go through the tribunal process if they have not exhausted all avenues already and have become desperate

When asked if Local Authorities use Barristers against parents, Dr Lown replied that they chose to use a Barrister largely when the parent was also bringing a barrister, and that the expense then becomes very high. That might seem fair (though I’d like to understand what was meant by ‘largely’) but parents rarely if at all go through the tribunal process if they have not exhausted all avenues already and have become desperate for their child to not or any longer be failed. That some who can afford to might seek some support with what is an extremely complicated process for them but bread and butter for Local Authorities is hardly a basis for blaming them for Local Authority tribunal costs. But what is the cost to parents of this attitude?

When the Chair asked the panel if parents are really able to afford Barristers, they replied that yes they are, and David Clarke, Deputy Director for Education, Oxfordshire County Council included ‘increasingly’. Now I very much doubt that parents are ‘increasingly’ able to afford to use Barristers, but what I think this reflects is that parents are ‘increasingly’ desperate. Most parents I come into contact with who use Legal services do so through desperation and make sacrifices that reflects that desperation driven by absolute fear of the consequence to their child should they not.

For example:

Where are my wedding and engagement rings? They are in the bank account of an Independent Educational Psychologist.

Where is my 3rd bedroom (desperately needed with 3 kids of different genders), my garage and driveway? They are with a SEND Legal firm.

Where is my career? It changed to unpaid and increased hours grappling with SEND law, complaints processes, creating complicated childcare logistic arrangements to jump the arbitrary hoops set by Local Authorities to produce the evidence they pretended they needed to actually offer some support occasionally.

Where is my husbands promotion? It is with the Local Authority meeting organisers who would make meetings about meetings even less about Outcomes without his presence.

Where is my pension? It’s via my husband, ensuring that I must stay married for the rest of my life through dependency rather than choice.

this despair is created through the culture within Local authorities that perpetuate attitudes that parents have wants rather than that their children have needs

I consider myself one of the lucky ones. Through my considerable sacrifices (and sacrifices made on behalf of his siblings) my son has a chance. But these sacrifices were made from despair, not greed. And this despair is created through the culture within Local authorities that perpetuate attitudes shown in this Education Select Committee, that parents are considered to have wants rather than have their children’s needs at their hearts, that parents claim more than their fair share of funding if they use the legal process, or that they are a homogenous group, working together who must be stopped lest one parents successful securing of something their child needs leads to other parents recognising their child is entitled to that too.  In actual fact, The Special Educational Needs and Tribunal Services (SENDIST) can only ever order a child’s legal entitlement regardless of what a parent might demand, and that is the maximum that can be gained from what Matt described as a process that had caused him incredible financial and emotional strain.

And yet I have sat in a number of Local Authority meetings where there is an air of belief amongst the professionals that parents pay for large bundles of evidence that the Local Authority simply can’t compete with, and that the solution to keeping within their High Needs Funding is to simply get better at tribunals. At one point David Clarke appeared to suggest that parents win 86% of SENDIST tribunals because they hire Barristers. Another unsubstantiated claim not up to the quality of figures and data presented by Matt.

The Chair asked whether parents were awarded costs for their tribunal wins. David Clarke responded that they can in certain cases, and this is correct, but those cases are only where the parents can prove clearly that the tribunal process had been unnecessary and a simple win is not enough. When the Chair asked where parents might get the money to afford Barristers, Ian Mearns, MP for Gateshead replied that they can access Legal Aid. This is untrue.

Legal Aid is available to those families without any assets including owning a home regardless of the size of the mortgage and can only apply for support preparing a case, not for representation during a case. It is in short supply and the amount available does not cover the usual cost of a case, so parents usually only have access to a paralegal often without specialist knowledge in SEND.

they had decided to home school because they had waited so long to have Education and Health Care Plans (EHCPs) put in place

And those who are unable to access legal aid, make such sacrifices or bear to navigate the system or simply cannot repeatedly, what happens to them? Well it is hard to say. It is likely that with the soaring numbers of families who are now Home Educating that many of the children with SEND for whom their parents did not feel adequately resourced to fight the system are amongst them.

Indeed Thelma Walker MP for Colne Valley told the Committee that she has recently had a delegation of parents of children with SEND come to see her and each of them said they had decided to home school because they had waited so long to have Education and Health Care Plans (EHCPs) put in place. When questioned on this, Dr Lown responded that ‘delays can be perceived as delays by parents’ implying that parents weren’t correct in their assertions and yet from the data presented on transfers to EHCPs from statements we know that delays are very much a part of the SEND process.

The culture changed so desperately needed clearly hasn’t happened and never was going to happen.

It is unsurprising to me, that when pressed, Matt conceded that he felt the money for the SEND Reforms had been wasted. The culture change so desperately needed clearly hasn’t happened and never was going to happen. Memorandums submitted by parents and parent groups in 2013 to inform the Children and Families Act 2014 Bill such as this I co-authored with Dr Debbie Sayers seemed to have been largely ignored in favour of those who lobbied on behalf of Local Authorities and concerns raised by Every Disabled Child Matters (EDCM) and IPSEA’s call for a moratorium also were ignored. In short, the parent voice wasn’t listened to. But what of Parent Carer Forums (PCFs)?

There is either no will, or no capacity among decision-makers to really listen and respond to parent voices

Well, SEND Family Voices, the PCF or Richmond and Kingston in their closing statement said: ‘We have spent considerable time trying to find a satisfactory way forward by discussing our position and the concerns we have for the parent community with Contact (who administer the funding and support for PCFs), the DFE, AfC, our Local Councillors and MPs’ and ‘There is either no will, or capacity amongst decision-makers to really listen and respond to parent voices even though parents and young people were supposed to be at the heart of the SEND Reforms. Furthermore, we believe that continuing to operate as a Parent Carer Forum in this climate risks lending a veneer or legitimacy to decisions taken by service providers that we feel is undeserved’.

And they are right. Even at the top, there appears no appetite for the voice of Parents and Carers. Consider the forthcoming Westminster Education Forum on 6th December 18 entitled ‘ The next steps for SEND policy – high needs funding, local SEND service provision and improving outcomes’ where James Frith MP for Bury North (who was present at the Education Select Committee), is a Keynote Speaker. The agenda states that there will ‘be an opportunity to discuss key themes emerging from the Education Select Committee’s SEND inquiry, and to assess what more might be done to address concerns from teaching unions and local authorities around the level and distribution of high needs funding’. Was the parent/carer voice deliberately omitted from this or are their concerns simply not and never were considered relevant to this discussion topic?

Matt told the Committee near the beginning that families he supports who are navigating the system now, ‘are facing exactly the same issues of difficulty in acquiring the support our children need happen for the same reasons that they happened under the 1996 Education Act set up’.  The system has simply not budged.

When later, Lucy Powell, MP for Manchester Central asked the panel: ‘Have you got any ideas about how we can flip that system in that way?  A brave system with a maybe a bit more money in the mix to flip round.’ Justin’s Cooke from Ambitious About Autism responded similarly to  Matt’s at the beginning, that there is no auditing or tracking of how SEND money is spent. But I’d like to offer something to Lucy.

How about we go back and look again about what parents and parent organisations were saying in 2013 about why the SEND Reforms wouldn’t work? How about we look again at the good analyses of what was ‘wrong’ in the first place by those and reported in the Lamb and Bercow reports, and actually link them this time to changes going forward from here?

Why don’t we actually listen to parent voice in its genuine raw state?

Why don’t we put in proper regulation of the legislation, as well as audit and accountability systems that means instead of fighting parents with tribunals, Local Authorities fight them with demonstrable outcomes for their children, with transparency for their decision-making and funding decisions, with parent confidence in local provision through invest-to-save priorities that ensure children get the provision they need early enough to head of future costs and before parents have lost faith? Where transparency and accountability is clear, only then can the true cost of SEND be uncovered as well as wastage and as well as the cost of not investing. Why don’t we actually listen to parent voice, in its genuine raw state, and not sifted and interpreted by those reliant on Government funding contracts which tell them how they must report it?

Lack of money is the consequence of the failures of the SEND Reforms

Only in such a culture that we currently have can the money be wasted or cuts be able to happen to the extent they have. Consider what might happen should new money be found? Would it be put into services for children, or legal services to fight against ‘floodgates’ for example. A quick check of how some Local Authorities have spent their SEND Reform Implementation Grant would answer this. Lack of money is not and never was the cause of the failures of the SEND Reforms. Lack of culture change, lack of innovation and ambition, obfuscation and poor accountability was the cause.

And this failure is predominately due to the lack of service client voice at the planning and implementation stage in anything other than a tokenistic or channelled viewfinder where it can be interpreted by public services unsubstantiated and unchallenged.

 

To EP, or not to EP, that is the question;

Increasingly I am hearing of schools prevented by Local Authorities from getting an Education, Health and Care Assessment by their insistence that any requests must be accompanied by a report from an Educational Psychologist (EP) which the Local Authority subsequently prevent access to any time soon.

Well, there is an easy solution to this;

Under section 36(8) of the Children and Families Act 2014, the Local Authority must consider whether the child or young person has or may have special educational needs; and whether they may need special educational provision to be made through an EHC Plan. There is nothing in law that requires an Educational Psychologist to recommend or assess at this point.

Under Regulation 6(1)d of the Special Educational Needs and Disability, it is the Local Authority and not the school, who is required to seek advice from an Educational Psychologist within this 16 week timeframe.

However, if the answer is yes, the child or young person has or may have SEN and yes, they may need special educational provision to be made through an EHP Plan then the Local Authority must carry out an assessment within 16 weeks of the initial request for that assessment. Under Regulation 6(1)d of the Special Educational Needs and Disability, it is the Local Authority and not the school, who are required to seek advice from an Educational Psychologist within this 16 week timeframe.

There is nothing wrong with commissioning a report from an Educational Psychologist to submit as a part of the request for an assessment, but it is worth considering whether this would be a good use of school resources given that the Local Authority MUST seek their own advice from an EP as a part of the Statutory Assessment. In some cases the Local Authority will be able to make a saving in then not having to commission their own, however this is only the case if all parties agree that the report is fit for purpose (covering needs, provisions and outcomes) rather than simply classroom observations.

Should there be a concern that the Local Authority is unsure of the law and will refuse a request for assessment without a EP report there are steps you can take to remind them of the process.

  1. Support an parental application for a request for an EHC Assessment. Either ask them to make it or provide them with the documentation to submit. Include a letter of support from the school.
  2. If the request is refused because of a lack of EP report, support the parent in an appeal to SENDIST. This is purely a paperwork exercise and all that happens is the same paperwork that was sent to the LA is sent to SENDIST. Parents do not have to attend a hearing. Include a letter of support from the school.
  3. SENDIST order Local Authorities to assess for a EHCP in about 90% of parent appeals, but this is likely to be closer to 100% if the reason given is lack of EP report (which is not a requirement in law) and the school sends a letter of support for the assessment request.

Of course at the end of an assessment the Local Authority may find that a plan is not necessary, and the school and parents will have to make a decision whether they agree with that decision or whether they ought to appeal again to SENDIST. However, at least you will have ensured that there has been EP involvement within weeks and not years, as is the child or young persons entitlement.

 

(Disclaimer: I am not a legal professional and it is recommended that anything considered advice here is checked with a legal professional or one of the legal charities such as IPSEA).

t to carry out an EHC needs assessment.’

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.

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.