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 Food for thought on why people with disabilities (and their families) need a rights-based approach to provision.  And how big institutions will try to grind people down even with those rights in place.  A True Story, in the form of a contemporaneous letter, from the year that Grenouille moved  up to secondary school.  Getting there involved a lengthy journey each day to an out-of-county school, mostly along remote rural roads.

 Ah, transport. Bless ’em.

Notification arrives in early August saying that G will be taken to school next year by Such-and-Such taxi company and will need to be ready to rock’n’roll at 8 a.m.  No mention of an escort.

So, I phone the transport department.

Me: “Hello, thank you for letting me know about G’s taxi for next year.  I wonder, could you tell me please about what is being done to train G’s escort in the necessary emergency health protocols?”

Transport Person: “G doesn’t need an escort.”

Me:  “Oh? I went to G’s Statement review a couple of weeks ago, and everybody was in agreement that owing to medical needs and other difficulties, a suitably trained escort was vital.”

TP:  “They (meaning the Authority SEN team) haven’t told us that. I’ll have to contact them.”

Me:  “Thank you. On the assumption that my information is correct, can you tell me please what sort of training the escort will get?”

TP:  “Oh, we don’t train escorts.  We used to, but under our new policy, the Authority doesn’t do that.”

Me:  “Indeed?  So what happens if a child becomes ill on the journey?”

TP:  “The driver phones 999.”

Me:  “But my child carries diagnostic kit and treatment in case of feeling unwell.  Are you saying that instead of helping G to use it, the taxi people will call out an ambulance or paramedic from an already overstretched major-emergency service?”

TP:  “Yes.”

Me:  “Well, quite apart from calling 999 being a ridiculously inappropriate use of public resources, particularly since it may well occur several times a week, may I point out that this is a safeguarding issue?  If my child doesn’t get treated until a paramedic makes it to wherever along Rural Road the taxi is, there is a risk that G will be a lot more unwell by the time of getting treatment than if treated straight away.  Doing nothing will actively contribute to making the illness worse, and G can become seriously unwell very rapidly.”

TP:  “It’s up to you or the school to make sure G’s OK to travel before leaving.”

Me:  “Indeed I will, and I am absolutely sure the school will, but it’s a 45-minute journey and that’s plenty of time for G to become ill, even if everything’s fine on setting off. G needs someone in the car whose principal responsibility is to help in case of illness.”

TP:  “Well, we can make you a parental grant. That’s like, a mileage allowance, and you drive.”

Me (starting conscious deep breathing):  “I’m afraid that’s not acceptable.”

TP:  “Oh, do you work? <sounds of rustling paper> It doesn’t say anything about that here.”

Me (on a breath about the volume of an Olympic swimming pool):  “Well, not that it’s relevant or any business of the Authority’s, but I can assure you that I work extremely hard, and taking three hours out of my day Monday to Friday to shuttle my child to and from school is not possible.  And as it happens, one of the jobs I do is to get up to check on G’s health during the night, and provide treatment if need be, and after nights when I’ve had only three or four hours’ sleep, I’d be in no fit state to drive to Schooltown and back twice in a day.”

TP:  “That’s all we offer.”

Me:  “Look, if you won’t train an escort and I won’t provide parental transport, you HAVE to find another option.  You know as well as I do that you have a statutory duty to arrange APPROPRIATE transport for children with disabilities.”

TP (reluctantly):  “Well, the only other option is a private ambulance.”

Me (with unsuppressed incredulity):  “Really?  That sounds unbelievably over the top for a child who just needs help with monitoring and maybe taking some simple-to-administer medication – but if it’s the only appropriate thing you have to offer, I’ll take it.  Thank you.”

TP (panicky):  “Er, um, er, er, I’ll have to…”

Me:  “No, seriously, I’ll take it.  No problem.  Look forward to getting the revised notification letter.  Byeee!”

Put the phone down and laughed until my middle hurt.  Didn’t hear from them during the next few days, and didn’t dare call back until I could feel confident of doing so without giggling down the phone line. Made my week, so they did.

But when I still hadn’t heard after ten days, I wrote it all down and sent a letter of complaint to the Authority’s SEN team.  They folded.  Of course they folded.  Game-playing gets kinda difficult when you have no cards in your hand.  It was agreed that G would have a taxi and a trained escort, and that I would facilitate training alongside a local paediatric nurse.

Got back home late evening on the last Friday in August, after a fabulous fortnight’s holiday in Cornwall, to find a message on the answerphone, date-stamped that afternoon: “Hello, this is Claire from SEN Transport, I’m just checking to see that you know about the training meeting for G’s taxi escort on Monday, please phone me on this number:  xxx”

So at 9 a.m. Monday I hit the phone.  Claire is not in the office.  No-one in the office knows where she is.  She has not left any notes of her schedule.  Nor do they know when or where the meeting is, although they think she may be on her way to it.  And of course they have no idea what contribution, if any, G and I are expected to make to the meeting. I deep-breathe like a steam-engine and persist, until at 9.35 I finally learn that meeting is at 10 a.m. on the paed. ward of Local Hospital.

After a mad (and, I regret to say, slightly sweary) scramble, arrive on the dot of 10 with G in tow, but paed. ward does not know which room the meeting is using…. although they are super-helpful about finding out.  Swan in five minutes late:  “Hi, this is G, who I’m sure would appreciate the offer of a chair.  I’m Kara and I’ll be back just as soon as I’ve managed to locate some change to feed the parking meter before my car gets clamped.”  Wish I’d had a camera to record the expressions!

Return to find G ensconced, but nobody has thought to make a space for me, so I stand and glare until someone cops on.  Then suggest saccharine-sweetly to Claire that if one is making in-absentia arrangements near close of business on a Friday for an event near start of business the following Monday, it makes sense to give the absent people FULL information?  As in, if one is disconcerted by an answerphone, the sensible and courteous thing to do is ring off, collect one’s thoughts and full information, and then ring back and leave a second, comprehensive message?  Nobody minds a second message on the answerphone, but being forced to do a sort of by-phone, against-the-clock scavenger hunt for info first thing on a Monday is, well, let’s say, unnecessarily irritating?  Sure a different approach will be greatly appreciated!  Claire pinkens, squirms and mumbles.

After which, the children’s nurse gives Claire and some other random Transport manager bod (still not sure who he was!), the two drivers (one regular, one relief) and two escorts (ditto) the standard emergency health protocol 101, with curlicues from G and me.

The escort is brilliant – lovely glam-granny type, turns up on the first day armed with a tote full of things like clean, damp flannels sealed in a plastic bag, and a roll of kitchen towel, so she can do cleanups if necessary.  Simples! – not nuclear physics!

The cream of the joke for me, though, comes later when I hear from the SENCO that as a result of my pointing out their statutory obligations, the Authority has had to rewrite its SEND transport policy so that it properly supports all children with any disability.  Bahahahahah!  Serves ’em right, the chancers!

Hope that’s brightened your day a little, H (and all of you).  I am so OWNING these Supermummy knickers at the moment!

Love, hugs and gales of righteous laughter

Kara

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