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Wednesday, 18 January 2017

Short History of our Short Breaks

And I'm back.  I will explain properly at some point, but the short story is that Smiler was unwell, and losing skills at an alarming rate.  Now he's levelled off and starting to pick things back up, and we have a preliminary explanation which is much less scary that some of those we've been given over the last few months.

So on with the show.  The sock photos have nothing to do with the content by the way, they're just socks that I knitted and I like them and I think they're pretty.  But absolutely not relevant.

Stripy and spotty and rainbow-y socks. Oh yes.

We've been pondering what to do with Smiler's 'short breaks' personal budget - basically instead of getting a council provided respite service, we have the money (amount based on an assessment of his needs) and purchase a service ourselves.  The theory is that the parents (and young person, as appropriate) can get something that is more suitable for them.  We wanted to get a PA (personal assistant) or support worker for Smiler, so he could go out and about after school one day a week and do something he wanted - go to Ikea for a free cuppa and try out all the sofas, go bowling, check out all the local Christmas lights - you know, ordinary things.  Okay, not what other 15 year olds do, but things that give him an opportunity to spend time with someone else, away from us to help develop his independence.

Anyway, back at the beginning (six years ago maybe?) we had someone who had just stopped working at his school to go to uni.  She was lovely.  They got on really well, she genuinely enjoyed being with him, and when she brought him back home he'd be buzzing with excitement,  telling us what they'd been up to.  Three years later after she'd finished her degree she had the cheek to get a job as a full time OT, and had to stop taking him out.  Despite trying everywhere we could think of, we weren't able to replace her.  Although the theory was that there would be plenty of willing applicants complete with relevant training and experience to fill the demand created by these personal budgets, it proved very difficult for many parents to find someone reliable who was prepared to work for the money we get from the council, and new legislation meant that as well as paying their wages and NI from the personal budget, we also had to provide them with pension contributions.  Although this was off putting we persevered, but Smiler's medical needs seemed too much for many.  The idea that at any moment he could have a seizure, or dislocate his jaw, or have a massive nosebleed - well, to be honest most of the applicants were looking for a young person with a relatively low level autistic spectrum disorder that they could take paces and do things with, not a wheelchair user with severe learning disabilities, never mind the personal care aspects or health conditions!

After about a year of trying unsuccessfully trying to recruit a PA we decided to change tactics a bit, and instead arranged for a local respite provider, running out of a centre nearby with sensory rooms, craft opportunities and outside space, to collect him from school once a week instead.  We paid for him to have a 1:1 worker, which to our mind meant that even though he wasn't out and about in the community doing things, he had a person who was focused solely on him who could encourage him to make a choice about what he wanted to do and support him to do it, to read books with him, to have a chat about what was going on in school or what he'd watched on TV yesterday.  Unfortunately this turned out not to be the case - they only usually used 1:1's for safety reasons, for young people who had tendencies to run away, or who might be aggressive to others.  This meant Smiler was seen as an easy option, and as they rotated 1:1's over time there was little consistency and no opportunity for Smiler to build up a rapport.  Over time we discovered that although we were paying for Smiler to be collected from school at 3:30 they were often late - regularly by about half an hour, and that as Smiler was so easy going everyone would have a 'turn' being his 1:1 while he was there, so each Friday he would have had maybe four different people with him for less than half hour at a time.  Fast forward two years and we now found out he often spent the time watching TV there, and they were dropping him home earlier and earlier - often just after 6 o'clock when we were paying £15 an hour (plus extras) until 6:30.

Meg, clearly impressed with my socks
It's very difficult to do anything once you're in this kind of situation though, as you - or at least I - worry about the fall out.  I wonder if I complain, will the workers treat Smiler differently because they're annoyed at his moany mum.  Will they be less accommodating when we cancel with only a days notice because Smiler is unwell?  Because Smiler's understanding of a situation is often superficial although he reads body language well, would he think he had done something wrong if people were short with him?

So we took the path of least resistance, and did nothing.  We smiled as they brought him to the door half an hour early; we nodded as school grumbled to us that they'd been very late collecting him again.  I felt trapped - we had tried so hard to recruit a PA and I really didn't want to start from scratch again - it had become very disheartening to find that the 'easier', more able kids could find someone to work with them fairly easily, but it seemed no one was prepared to take on my son.  So while we were dealing with getting the house sorted, Mr and I reasoned out loud to one another that at least it was better than nothing, and even if he was only watching TV, as far as he was concerned he was having a good time, and Noah and Petal were still getting a bit of time with us when we would not have to drop everything if he needed something.

But a couple of weeks ago, things came to a head.  They had been behind in invoicing us, so we chased it up, only to get three months of invoices in one go, each of which had an error.  Two had the milage of bringing him home to us as nine miles, instead of less than two - they were still calculating using the old address, where they have not taken Smiler in over a year.  Of course, this means we've probably been paying this incorrect amount since then, but I don't really want to dwelling on it!  The bigger issue was the invoice for the school holiday period, where we had been charged more per hour than usual, for no apparent reason, which lead to the bill being £150 more than we had anticipated (turns out they charge more per hour in the school holidays, but hadn't told us).  It was time to make a change.

So I rang an agency.  We'd pondered this option before, but had shied away because of concern about how ridiculously expensive it might be and also, I think, because it felt different.  Paying an organisation to arrange care felt very formal, and it felt like a bit of a slippery slope - a step towards Smiler being an adult that we have to arrange these things for.  Daft, of course, because he is now 15 and it's not all that long until he is an adult we have to do this for.

Anyway, I digress.  We contact a small local agency who I'd heard somewhere were meant to be good - it was originally set up by a couple whose children had severe disabilities and for whom they couldn't find appropriate, reliable care.  Met with the care manager, did the paperwork, talked things through, and on Friday Smiler was picked up from school by ... let's call her Jane.

And here is why we are now worried.
   ●    Jane went to the wrong school (well, right school, but wrong site).
  ●  Having gone to the wrong school, she was then late to the right school.
  ●  When asked who she was collecting, it transpired she only knew Smiler's first name - she clarified by saying "His mum is Lucas"
  ●  When asked to show her ID, she said she didn't have anything like that (school said you can't take him without it, and after a rummage in her bag she produced an agency ID)
  ●  Jane took Smiler to Ikea and got him hot chocolate and a cake (we had suggested Ikea's free cup of tea and some time sitting on all the sofas and looking at the Christmas decorations, and said No Cake because Smiler is getting a bit chunky - not said in front of him obv)
  ●  Jane brought Smiler back home at five o'clock, but wrote 5:30 on her time sheet.

I wrote this shortly before Christmas, and the situation has moved on again, but I figured I'd better post this so the next one will make sense!

Do you get a Personal Budget for your child or young person?  How do you manage it?  Have you had any difficulties recruiting?

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