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The wolves in sheeps clothing

diability pic

Yesterday six years ago, Jan 18th 2012, we went to tribunal to try to get Dylan funded ABA therapy at home. Yesterday, Jan 18th 2018, we went to negotiate Dylan a placement at college, back in a fairly standard education framework.

The ironic thing being that just as it was painfully difficult all those years ago to successfully ensure Dylan could have an education out of the special education system, here we are six years later having an equally difficult time trying to get him BACK into the very same education system.

SEN (or special educational need) education is a different world to typical mainstream education systems, and I don’t just mean the schools. Special schools are the shop front of special education but there’s a whole maze of departments and procedures weaving its way in the background, difficult to infiltrate and even harder to make sense of.

Take our current situation – Dylan has an EHCP, this was set up in August with Home education named as his educational placement on the agreement that once a college placement was found this would be amended. Since then, yes six months ago, the local authority has been exploring and deciding if a placement can be sought for Dylan.

We have visited our local college and explored the provision, yes pupils can be accepted as young as 14, yes a part-time placement can be agreed. But no, nothing is ever finalised.

Over coming weeks and months emails are sent but no response received, voicemail messages left at departments but no calls returned.

Then finally a day or two before Christmas we received news – out of the blue – that transition to full-time college in September could commence. Dylan’s case has been to panel (as a parent I didn’t know this was happening) and funding finally agreed. Next step was to hear from the college directly with how to move forward.

Christmas and New Year passed and yesterday we went to visit the college again to get a feel of where we think Dylan might be best suited within the wide, wide scope of provision and needs catered for within the college setting.  The visit was informative and bright, finishing up with a talk with the programme leaders about the next step.

Well this is where our next couple of obstacles arise, in a very much ‘chicken and egg’ scenario – It is all such a muddle in my head that I’m not sure I can get it down in words but, I’ll give it a go.

***1*** To access college Dylan needs 1-2-1 support from a familiar adult. This is stated in his EHCP and is apparent to just about anyone who meets Dylan (as they haven’t got the foggiest with how to interact/understand him.)

LA – AGREE (its in his EHCP)

COLLEGE – AGREE (They understand that Dylan needs familiar adult with him)

PARENTS – AGREE (Absolutely, no doubt, Dylan would be so anxious without this)

***2*** Dylan needs to transition from his home education setting and lessons to a more structured setting of the college, this will take time and requires sensitivity to avoid Dylan becoming too anxious or stressed and internalising his concerns (thus setting him back emotionally and psychologically; which will have a knock on effect with his ability to learn)

LA – AGREE (Again, its in his EHCP)

COLLEGE – AGREE (They have seen EHCP – no questions raised about this)

PARENTS – AGREE ( Agree- we know Dylan, its part of his personality and well documented)

Now despite the fact we can all agree on these two point above the only people who are able to fulfil the criteria of knowing Dylan well enough to facilitate his smooth transition to college are us, his parents. That is why we were able to write his EHCP, that is why we have successfully taught him for the last 7 years and have him now in a position where he could potentially access another educational placement. We can do this.

LA – WHO KNOWS, THEY HAVENT GOT BACK TO ME

COLLEGE – ABSOLUTELY DISAGREE, THEY HAVE A POLICY DISALLOWING IT

PARENTS – AGREE

Now this is where it gets confusion but try to bear with me. The best thing for Dylan is to have someone familiar with him to aid transition, transition being the process of moving from something he knows to something he doesn’t. College has responded to the fact that we don’t have anyone fitting this description apart from us as parents by advising that we go to a care agency or advertise and employ someone.

Now without wanting to sound difficult or obstructive, I have a number of issues with this.

1 – The cost of employing someone for a full college day (8.30-4.30 at approx. £15 an hour equates to £120 a day, add-on to that employers NI contributions, holiday pay, sick pay and we are looking at possibly excess of £600 per month.

2- We have approached family members, previous neighbours, previous tutors, friends of the family and others to try to locate someone who meets the criteria of ;

*knowing Dylan or his situation in some sort of capacity

*caring disposition

*free in the week when we need them to be to physically attend with him for the full day.

So far – no one has met all three criteria.

3 – The colleges suggestion of employing someone from an agency is flawed in multiple areas :

  • It will be someone new for Dylan, we as parents (already working, home educating and a busy family of three children) will need to find the time and resources to screen and interview carers, employ them, pay for them to spend time getting to know Dylan so that he can then access college and have to prepare for further change in September when he could go full-time.
  • The time this will take will be a waste of the placement that is already there waiting for him, it’s a waste of money to have someone paid to take him to college when Dylan’s Dad is more than able to do so and so far it seems from the lack of response from the local authority it will be us as Dylan’s parents footing the bill for the carer.

(Are you still with me? I’m angry typing now)

So what if we don’t do what the college say and employ a random carer?

Well then Dylan can’t attend his educational placement of our choice, one that could help him prosper and grow, one that could offer him friends and a change of scenery. Teenagers all need time away from parents and family to allow them space to grow, college could be this for Dylan. Its more than just education, its more than we can offer as parents. He really needs this.

But do you know what my biggest bug bear is, the wolf in sheeps clothing;

The ‘integration’, the ‘We understand special needs’ and ‘I’ve worked in special ed for 12 years’ but when it comes to the crunch, a reasonable adjustment is too much to accommodate unless it’s on their predetermined terms. It’s truly the worst case of discrimination.

Discrimination or lack of understanding is hard enough coming from those who are ill educated, simply don’t understand or are naive. However, these people can be educated, they can be shown and are often willing to learn how different things can be for others.

The ones you have to watch out for are those who conceal themselves under the cloak of years of training and disability awareness seminars, those who immerse themselves in policy, previous experience and prejudgment. It’s these people who subtly discriminate by losing sight of including the individual because they are so damn self-assured that they know all about the condition they don’t even see the person or their needs anymore. They spend a lot of their time hiding behind voicemail answer-phones and generic email addresses, offering fake support and guidance without any transparency, without giving the full picture, all while withholding knowledge, information, guidance and resources.

They’re the ones to watch for.

And that is the extent of disability discrimination within our education system; wolves in sheeps clothing.

 

 

 

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Best foot forward

Dylan went to the doctors today. Thankfully as a healthy child he doesn’t see the GP much. At all.
But recently I’ve noticed small bones protruding from just above the arches of his feet. The bumps are rubbing on his shoes resulting in him having small pressure sores developing. Dylan’s having to wear socks in the current stifling heat to avoid the skin there breaking down further. 

Although Dylan lets me look and check these lumps without complaining, his body language tells me it hurts. He flaps violently when he thinks they are going to be touched, his whole body stiffening with anxiety until he is reassured thst these sensitive areas won’t be meddled with.

We had no option but to visit the GP. We talked this through with Dylan who appeared to be okay and understand the basic process we were explaining to him. 

Appointment time came and went but Dylan was a superstar waiting patiently in the busy waiting room for his appointment. Finally we were called into the GP office Dylan kept his anxiety under control and allowed the doctor to look and feel the bony protrusions. I explained to the doctor they don’t look right and seem sore although Dylan’s communication difficulties make this really hard for him to relay to us.

‘Its all fine ‘

 doc said as if I was being a bit silly bringing my concerns. He went on…

‘We all have different feet, as long as he is exercising plenty he’ll be fine. 

Keep him moving”

That’s it. Consultation over. 4 minutes.

Dissatisfied with the advice from the GP we leave politely and get in the car so I can contact my default doctor for advice; 

Dr Google: search term “painful bump on side of foot”

First result of many all saying the same thing is this:

Seems Dylan is fitting the descriptor for a diagnosis of having Accessory Navicular Bone. 

Side effects of which are possible fractures, loss of stability of joints, development of ‘flat feet’, loss of mobility and pain which “gradually becomes worse, and… is aggravated by activity, walking, etc.” Resulting in Accessory Navucular Syndrome which can be debilitating and require a range of treatments.

Seems my inital discontent at the advice of ‘exercising plenty’ was not misplaced and indeed will not remedy this issue. 

I’m so mad! 

  1. Dylan has his diagnosis of autism in bold on his medical notes on the computer screen. 
  2. I told the doctor clearly that Dylan can’t tell us if he’s hurting. 
  3. We never go to the doctor but had presented for this ailment so it clearly is a concern and we were nothing short of fobbed off. 

First thing tomorrow; I’m self referring to a podiatrist for a proper examination for Dylan and some advice for me. Something I think I probably should have done in the first place. 

Grrr!

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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