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Let battle commence!

Today is EHCP day. 

An EHCP or Education, Health and Care Plan is a wondrous affair where a person with special needs has all of their difficulties and challenges outlined in one easy to read document. This document is then shared to all three specialties; education, health and social care who professionally argue to be allowed to demonstrate that they can best help meet these young person’s needs, allowing the young person to achieve their full potential and develop skills to be able to have a full and meaningful life.

Sounds wonderful; sadly far from the truth.

EHCP day is the culmination of the last 3 months of assessments from various, previously unmet professionals. The professional comes to the house, stays for no more than two hours to observe or question both Dylan and ourselves and then they leave. Following this brief encounter a report is produced and sent to the special educational needs (SEN) department. If we are lucky then as parents we are copied into this correspondence. If not, then the leg work of chasing this up begins.

The document itself is made up of various elements which should work in a reactive chain. The first part of the document outlines needs. This part is complied by the SEN officer who reads the various assessments and ‘cuts and pastes’ these into a document. 

The ehcp is a new document and a new process which involves the young person and the families more than the previous ‘statement of educational needs’ document that it supersedes. 

The truth is that Dylan’s new EHCP draft document is his previous statement with small more recent elements added. It still refers to when he was at school. HE LEFT FIVE YEARS AGO?

Anyhoo. 

This first part of the document outlining needs is then used to construct some targets for the following year. These targets should be SMART and individualised to Dylan’s needs, like little building blocks, these targets can be used to work towards a bigger target over the coming years.

Then the next section is the provision section. What extra help is it that Dylan needs to be able to meet the targets and who’s going to provide them? So it’s a clear flowing process where Dylan’s needs are key and the document flows to devise a plan of support with these. 

A fundamental flaw to this process is that the inital compiling of the information and identification of Dylan’s needs is completed by a SEN officer from the local council; the same council which provides or commissions the support. As a legally binding document it must match support to identified needs. However if the department doesn’t have the funds or the provision to be provided in the third section chances are those needs will be over looked, tweakef or omitted in the first section to make it look like a worthy document. 

If they don’t mention the need then they can’t be expected to provide for it. Well that’s not fair! 

For instance in Dylan’s needs assessment the use of the iPad for him to communicate is mentioned a total of four times within the needs descriptor along with how impossible it is to understand him verbally. Scan through to the provision section and speech therapy support this year is being reduced from 15 hours a year to three visits with no mention of the iPad. Not only is this a huge drop in support but the provision is being outlined before the needs section has even been discussed. The EHCP, like the statement before it, is a provision led exercise rather than needs led support system.

When the prepopulated document is produced it is circulated to all who  contributed with a meeting invite. This meeting is supposed to be to discuss a representation of needs and for the the provision to be agreed. 

The reality is that Dad and I go to meet with 1-2 of the professionals who have contributed to the assessment process (as most of them don’t turn up anyway). We then disagree with the needs section as its out of date but have to use the piles of dogeared highlighted documents that were produced in the assessment process to demonstrate why Dylan’s documented needs should be changed. Its not just a simple request. 

Sometimes you can convince the SEN officer to change or amend the needs section. Others not. After all, she wrote the needs section in the first place! 

Dylan’s aba consultant and Miss E are not allowed to have reports considered for this as they do not provide county provision, even though they do provide provision for Dylan. Again, this is a provision led rather than Dylan led process.

And so it goes on. Once the needs section is completed we continue to move onto the targets and each speciality worker should contribute to how their assessment demonstrates the support Dylan needs to access learning and achieve some targets. But with only a handful of professionals present it falls to Dad and I to fight Dylan’s corner to have some decent targets for the coming year. 

Before when I wasn’t as informed about this process as I am now, we weren’t even invited to the meetings and it was all held within the school. A favourite yearly target of mine from the statement document when Dylan was about 7 was ‘to be able to mix cooking ingredients with his hands’. We removed him from school soon afterwards….

So my mission for this morning.

  • To have the iPad documented in the provision section so if it breaks or needs replacing this should be covered by his ehcp and not down to us to replace. Dylan needd his iPad to communicate. Dylan also needs access to an AAC environment where he can have specialist support on developing his communication skills and feel that he belongs to a community of AAC users. 

  • Dylan can’t communicate so he cannot have his speech provision reduced. Absolutely not. Even though the 15 hours from last year only actually materialised into 4 hours (which is illegal) and the standard of therapy is so low that we privately source Miss E. It must be recorded that Dylan has these needs and this is the provision required to meet them; regardless of who provides it.

  • Dylan needs more social opportunities. We want a college place for him. After a wonderful visit to the college yesterday which Dylan thoroughly enjoyed he needs to be able to access a specialist educational placement. Only a day a week to be able to get used to a new setting to then be able to go full time by 2019.

The only difference between the statement and the EHCP is that Dylan is asked to contribute to it. We took full advantage of this. The bank of questions used once again shows how unindividualised the whole process is.

I love the ‘glorified babysitting’ line on our family statement that they have to accept as part of our evidence. Not a truer word.

Well I’ve got my big pants on; wish us luck!

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The next generation

A couple of weeks ago Grace had some friends round.

We don’t often have people over, historically it has been overwhelming for Dylan and secretly Dad and I have always felt a bit vulnerable about the sometimes innocent cruelty of kids to one another, especially to those who are different or misunderstood.

Don’t get me wrong; we have never had any issues. Josh and Graces friends have grown up with Dylan. They see him in the playground at pick up and drop off times and will often innocently ask valid questions to the younger two about Dylan. 

Children are naturally inquisitive and its important to ask about things you don’t know or understand. Ultimately its how people learn and I fully encourage this. However I am also aware of the burden to the little ones being Dylan’s advocate to the big wide world. Home should be that little bit of sanctuary where they don’t have to protect or defend him.

But the wee ones are growing up and have needs themselves too so before the half term break we agreed and had a small gaggle of Graces friends over for a picnic and a play.

Well, what a beautiful set of young souls. They played both with and around Dylan; involving him when he wished and accepting when he didn’t. Communication was no issue and his flicking, flapping and straw knawing was totally overlooked. He sat in the garden and ate with them as pleased as punch.

Faith in humanity and hope for the future restored. 

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Namaste 

Thankfully Dylan has always been relatively easy going and as a family we live our lives straddling the fine line between trying to expand Dylan’s experiences out of his comfort zone whilst simulatiously picking our battles to maintain some family harmony.

Dylan has always been highly anxious with anything to do with his body; physical examinations, people looking at or asking questions about his body or if he is required to imitate others can send him quickly into an anxious state. We have attributed this to his sensory processing difficulties which appear to be highlighted to him when his attention is drawn to his constantly flailing limbs and stiff posture. 

So when Dylan’s ABA consultant suggested yoga as a keeping fit activity we nearly choked on our digestive biscuits and almost certainly knew that wasn’t ever gonna happen.

However a few weeks ago I found a special needs yoga club and we decided to give it a try. The reason for this was less from the perspective of keeping fit but more for the purpose if learning a lesson of compliance, of fulfilling a task request or activity because of external necessity rather than all of Dylan’s activities being self directed. 

Initially he hated it and would grizzle and request ‘cola’ throughout but over time and gentle consistency he’s actually getting quite good at it. 

Okay some days are better than others but we’re persevering!

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Cracked but perfect

Dylan’s iPad needed a bit of an overhaul. 

It’s use, albeit is a good thing, has resulted in a seriously cracked screen and a selection of stains and spillage to both the casing and the screen. 

Today I decided to bite the bullet and investigate. The big issue being if the screen itself is cracked Dylan will need a new and costly iPad but the truth is he can’t carry on with this messy looking device. Something had to be done!

Thankfully the screen protector came off in one piece and the iPad screen is perfectly intact. The rest of the casing and machine cleaned up beautifully and looks as good as new.

But this, the cracked damaged iPad screen protector mesmerised me. 

In my eyes it’s not damaged. It’s been the vessel for my boy to gently feel out his words. 

To navigate options. 

To both make errors and correct them. 

His fingers have scoured the length and breadth of this toughened glass to tell me his thoughts and give me the eagerly awaited answers to my questions.

Bizarrely unable to dispose of it, I have gently wrapped it and put it away in storage with Joshs first teeth and Graces first baby blanket.

To me its Dylan’s first voice. 

Cracked but perfect.

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John Doe

There once was a man called John.

John had a fall, in a public place but it was an unwitnessed fall and afterwards he was complaining of pain. When questioned it was deemed that his knee was the site of the injury and he was rushed off to be scanned and assessed. All assessments came back clear from injury so John was discharged to a rehabilitation unit to have therapy on the soft tissues damage he was deemed to have in his knee. 

John continued to exhibit signs of pain – he has limited communication which is acknowledged by the hospital staff. He continues to report the pain in his knee. His mother is with him all the time, deemed a bit of an interfering pain to the hospital staff she continues to pester the staff, unable to rest as she is adamant that her son never complains about pain, he has a high pain threshold, something isn’t right.  Her pleas are ignored. John is encouraged to commence a rehabilitation programme – he is advised to mobilise and cycle as part of his therapy. Often crying and reluctant to comply his mother becomes more and more vocal that something isn’t right. After days of no improvement he is sent for another knee scan, which continues to be normal, he also for some unknown reason has his ankle scanned too, both clear. The therapy continues, more tears, mum becoming more and more bothersome. Niggles about lack of care turn into complaints, an interfering mother, a reluctant complex man who won’t adhere to therapy advice. Reports of food being left out of his reach, unable to get to his drinks, not given his glasses or hearing aids.  Meals missed, therapy being pushed, more tears.

Three weeks later John has another scan. After repeated requests from his mother John has a body scan in light of the constant reports of uncontrollable pain it turns out that John has been cycling on the gym with a fractured pelvis. The break had which had been present since the unwitnessed fall been missed on numerous occasions, this is not acceptable but it happens, there is human error.

What is not acceptable is the disregard for the viewpoints and concerns of John’s mother, her repeated voicing of the fact that John was demonstrating signs of severe distress and in her exposing this sign of his condition the attitude that then developed towards both John and his mother is inexplicable. 

John is in his 50s, his mother in her 70s. John has a known learning difficulty and various disabilities. None of these were taken into consideration when his responses to pain were assessed. The person best to interpret his behaviours, his mother, was deemed a pest. Almost unacceptable that she would remain with him all day and was most likely repeatedly told 

‘Go home and get some rest, we’re looking after him’

Is it any wonder that as parents we don’t leave, we don’t stop watching, checking, researching. It’s exhausting but it’s all we can do to try and keep our loved ones safe. Even in a place of care with highly trained and very experienced professionals, no one listened to John or his mother. John was failed. Over and over again.

I do not know John, I’ve never met him but I know he exists and I know his story is true and it scares the life out of me and fills me with fear for Dylan.

One cruel lesson that I am being reminded of on a daily basis. 

Trust no one.

Image from sectioneduk.wordpress.com