Tag Archives: EHCP

Known unknowns

When people tell me they don’t know how I cope with the challenges of our life I always take the trouble to point out to them that Boo is not the challenge. Neither cerebral palsy nor prematurity is even the problem. It’s all that came with his early birth and life-long disabilities. The people. The processes.

The uncertainties over his future are probably hardest of all to deal with, but you learn to live with that. I never thought I’d say that, but you do. I have. I think it’s because I can see the progress he’s making. He is on his own developmental curve, but he is developing into a lovely, bright little boy.

No: it’s the other uncertainties that come with Boo’s disabilities that are the unbearable ones. Your reliance upon individuals, services, administrations and bureaucracies that frequently fail or demonstrate levels of incompetence that are not just astonishing because frequent and because no one ever gets taken to task for them as they would in any right-thinking organisation, but because the consequences of people not getting this right can be profoundly damaging to Boo’s body and state of health. They don’t do my mental health much good either, let me tell you.

Some individuals we have been forced to rely on for advice and support have had appalling bedside manners (‘we don’t use the term vegetable any more, but…’) or made terrible mistakes, one leading to his hospitalisation. Others, happily the majority, have been caring and competent, even brilliant, but they have constantly been let down by the systems they are forced to use. Currently Boo’s physio (the very best of the healthcare professionals involved in his life) is pursuing a failure in duty of care notice about one service’s treatment of Boo at her own instigation, not because we asked her to. The fact that such action is commonplace and affects so many of the families we know makes me want to weep.

Until now the only things that have held us together through the catalogue of problems over getting ‘essential’ equipment and services for Boo (for which we, like so many other families, have had sometimes to wait well over a year) are our waning sense of humour, our determination to fight back and the fact that our home life and routine are fairly stable.

And now even those things are in jeopardy. Our LA is illegally sticking to its guns about the level of support it will give Boo in nursery (15 hours a week because of his age and not enough to cover his time there so I can work) and the onus rests with us to prove in court that they are wrong in taking this position without attending to his level of need and how long it actually takes him to access 15 hours of education, not for them to have to prove that they are right.

This will cost us money. Even if I can psych myself up to defend our case in court to save costs (and I am so beleaguered at the moment, I just don’t think I can) we will need to get a series of expensive private reports drawn up, even though all of those already provided by NHS and LA employees say what Boo needs them to to prove our case. If we got a solicitor, a much better option, we are looking at many thousands of pounds.

Given that we may end up in a Tribunal again about schools in 2 years time, we can’t afford this. More to the point, I would rather the money that we spend supporting Boo gets spent directly on him, not on people who make a living out of the fact that he is disabled.

And so, I can see things very clearly now. When people talk about the challenges in our lives I will be more emphatic. The big challenge in our life is not CP, administrative incompetence, systemic failure, or the illegality or ignorance of the Local Authority. No: It is money.

No one cares about Boo or about us. All anyone cares about is their budget.

So if it’s money people want, they can have it. I am currently begging (I am not proud of it, but I am – it is humiliating) Boo’s nursery to take more money off us (money we can only just afford) to buy him the 1:1 the LA won’t without a fight so I can continue to work. So we can have stability in our life. So Boo can access an educational and social environment that is aiding his development hugely. So that we can keep our home. So we don’t have to pay the council back for adaptations to be made to our home in the next few weeks if we are forced to move out of area into a home that we can afford on one income.

To be fair, the nursery is looking into this possibility. They are looking into seeing if they can help us meet the costs too. But the nursery is part of a national, expensive, private chain. (Your childcare options contract significantly when your child is disabled.) The nursery manager has asked their bosses to arbitrate on this matter. That was nearly 2 months ago. They still haven’t made up their mind. We are totally in their hands. I have no control over their decision at all.

So, in 3 months my life might be very much like it is now. Or it might be very different. I may have handed in my resignation and our home might be on the market. We might be trying to find an elusive accessible property Boo can live in and we can afford on a single salary that is near a decent school for Boo’s sister who will be forced to leave her friends. We might be facing up to having to set up again with a new bunch of healthcare and education professionals for Boo in a new area. Every time I think about it, I feel dreadfully sick.

These known unknowns utterly terrify me. I can’t sleep well and am developing migraines, which I have never suffered from before. I feel so shaken by not knowing what our lives will look like in 3 months time. Whether all the stuff that keeps us together (our home, our friends, our routine) will be taken away from us.

It is devastating. And no one who can do anything about it cares. Not one little bit.

Writing a Statement: An Open Letter to our Local Authority

Dear Local Authority

Thank you for issuing Boo’s final statement the day before your deadline. Thank you for taking an entire month to accept all but one of the tracked changes in the statement I wrote for him, in which I pointed out evidence you’d missed and solicited more where you felt it was needed. It only took you a second to click on that Word button that said ‘accept all changes’ and now Boo has a statement that has a wonderfully detailed and accurate assessment of his needs and matched provision in parts 2 and 3.

Thank you for letting me do your job for you. Oh no, no, no: don’t thank me. It was an honour. Honestly. And taking two and a half days off work to do this so that you didn’t have to, which I then had to make up at evenings and weekends, was a doddle. No worries.

My pleasure.

But why oh why did you miss out the most important sentence of all? The one that accumulated the several pages of 1:1 provision now rightly stipulated in part 3. Why did you not quantify the hours of 1:1 he needs each week in total? Is it because  you know this means you are committed to nothing at all? Is it because it renders the rest of the statement entirely meaningless?

A friend texted me to ask if you are very stupid or very strategic. I don’t know. I honestly don’t know.

So now we have to go to court to get them to ask you the same question. Well done, LA.  You stay classy.

I think it’s a brilliant idea, actually. Every time I don’t do my job at work properly why don’t I insist that my colleagues or other stakeholders take me to court to prove it? And then I needn’t face up to not doing something I am meant to do for five months at a time. Terrific idea. I will propose it at the next policy and planning meeting I attend.

But in all seriousness, because I, for one, have not forgotten what a serious matter this really is, I wonder if you would act differently if you knew the true cost of all this. No: not those beans you are counting, Madam, save them for the panto at the local rep. No: I mean the very real, the very painful, psychic costs of your incompetence? Of your failing in your duty of care to a vulnerable child. You may know this already, of course, or know and not care. But I’ll feel better if I tell you about this. So here goes.

This is how you make us feel.

You address us with the mock courtesy of a 1930s schoolmistress talking to the parents of a badly behaved schoolboy on a parents evening. The social niceties are there, but you aren’t very good at hiding the fact that you are talking down to us, as if we are badly behaved or stupid. Oh and while I’m at it, do get my title right, please LA officials. My daughter is the only Miss in my family and at 7 years old she will likely only put up with the diminutive for another couple of years herself.

You seek to infantilise us, feigning knowledge and regaling facts that are simply untrue. Do you think we won’t have done our homework? Do you think you can get away with it? Or have you been relating these spurious facts for so long that you now genuinely believe they are true? Who knows…

But you know, I’m 38 and big and ugly and all that. I can take condescension. I know what to do with it. Right back at ya!

So why do I finish each and every exchange with you wanting to sob my heart out? Why do I get off the phone shaking? Your incompetence? Your only partial truth telling?

No: it’s because you treat my boy, all our children, like a really nasty little problem. A deep inconvenience. A drain on resources. A  scrounger. Never mind that this little problem and all the other little problems like him mean you have a job. You treat each of our attempts at contact with you (and there have only been 4 in 7 months) as a minor outrage. How dare we try to speak to you. How dare we remind you that we are human.

And you have the audacity to sign off every email to us with a mission statement declaring the LA’s vision of creating ‘opportunities’ for young disabled people to ‘contribute and achieve more than they thought possible’. (Yes: you know which Local Authority you are, don’t you …?) Forgive me, but these words – because they are just words – stick in my throat.

Everything Boo has achieved to date has been in spite of you and we will continue to support him while you just put more and more impediments in the way. Frankly, you don’t know the meaning of the word vision or at least you’ve forgotten it as it’s gotten buried under a pile of budget sheets.

And you know, I get the financial stuff. I do. But you can’t even be honest about why you are failing our children. You don’t say: we can’t afford it. You say: we can’t do this because this form isn’t filled in to our satisfaction, or the OT didn’t use the right kind of headed note paper, or because he’s 2, or because you should give up work and live (euphemism alert) on carer’s allowance.

Local Authority, you leave us bereft, angry, embattled and sad. But worst of all, every day you drag your heels our son loses out. Some vision, Local Authority. Some vision.

Good News Friday #72-75

Honestly, I can’t keep up lately. There is so much I want to tell you about, good and annoying, but I just don’t know where the time is going lately. Well I do – appointments and work – but I am in denial. So it’s a good time to pause for thought. A time to remind myself, it isn’t all chaos here in Boo land. And the good stuff keeps coming.

So, here are some good news highlights:

1) Running: I ran a half marathon last weekend. I know I don’t post pics of me or identifiable pics of the kids on here, but those few of you who have met me in real life can testify to the fact that I don’t look like a runner. (In fact, I am now on a post-run diet.) And I struggle to call myself a runner. Running is what other people do. But last weekend, after months of following the most skeletal half marathon training I could and still have a reasonable chance of crossing the finish line, I did it. In 2 hours 12 on a hilly course. I am thrilled. Running is so important to me. I can’t say I like running itself that much, but I like the enforced me time, I like pushing myself in recognition of the challenges Boo faces every day, and mostly, I like raising money for good causes. Which I did. I am so grateful.

2) Statementing: Because of a not so happy accident I regaled on the blog’s Facebook page, I found out that Boo is going to be issued with a statement. We hope to have it next week. Of course, we can’t know what it will say and the battles may only just beginning, but our hope is that it supports him better and for longer in his nursery setting. It has been quite a journey so far, I hope the road ahead isn’t too long.

3) Boo: I have about 5 Small Steps Amazing Achievements posts I have to write to tell you about the new things Boo is doing. I don’t want to steal the thunder of the posts I want to write, but don’t set the bar too high. It’s not like he’s learned to walk, or sit, or roll. But you know what? Those inchstones keep coming lately. Little surprises, things I’d almost given up on are starting to happen. Odd words I wondered if I’d ever hear, gestures, small acts that are a very big deal in our world. Dare I say it, Boo’s on a bit of a roll. And it’s a fun ride to be on, let me tell you.

I hope you have lots of good news to share. Do let us know what’s going on in your world. We love to hear from you!

 

Today…

Today we have our first visit to a local school (our daughter’s) to talk about Boo and whether they could accommodate him or not when he starts reception in two years time.

Boo is two. Yep: two.

This feels wrong. He is so young. But we have been asked to start this process now, because we live in a LA that says in hushed tones and not to be repeated words, ‘we just don’t have schools for kids like him here’. ‘They might have to build stuff for him.’ ‘It’s going to take time to work out what to do with him.’ My lovely little boy is reduced to the status of a problem in a matter of sentence.

Today, I wish my crystal ball was working, so when the inevitable questions arise – will he be able to hold a pen, walk, or use the toilet independently – I will know for sure what to say. (I think I know, but can’t say for definite.)

Today I feel a little bit sick because I know this school, a lovely, 3 minutes away, small, modern flat-level, high-achieving, nurturing school is not right for him. I know we are just playing a game. Having to look at schools so we can say to an unsympathetic LA that will likely try to push us to conclusions we don’t agree with, ‘No: we looked there. It isn’t right for him.’

But where is right? Are we chasing something that doesn’t exist?

Increasingly our options seem to be out of county. That involves travel for Boo and tribunals for us. Battles I can’t face. Not today anyway.

Today, just today, I would like to just be able to exist in the now. Not have to think about the past or worry about the future.

I wish today was tomorrow. And then it would be done. Until the next visit, that is.

Right on TAC

It’s been a while, I know. I’ve had a few days away with work. Exhausting and busy and hard work at that, but good and a much-needed break, if you can call a four-day 8 a.m. to 7 p.m. work trip on another continent a break. Well in our world, you can. No therapy and no appointments (although there were a few groggily answered transatlantic wake-up calls from people in the UK trying to book appointments with me for Boo at 5 a.m. local time). And it presented a much-needed opportunity to mainline black coffee (while hot, people!) and catch up with some of my closest friends, who I first met through work. It was good and it was fun, although I missed the Boos terribly, and I’ll admit that I have rarely been as tired since I came back. I’ll write more about that soon.

For now I wanted to let all the lovely folks who have asked on Twitter or email about our TAC meeting last week know how it went. There’s a short and a long answer. (Isn’t there always?…)

The short answer is: good. Better than we’d hoped. The long is: good. Better than we’d hoped. But crickey, we have a lot to do.

In short, then, it was a very positive atmosphere. Everyone clearly cares a good deal about our little boy and sees in him many of the things we do. Everyone praised his determination. He was called a ‘therapist’s dream’ on more than one occasion. Because you see, he so wants to learn; he so wants to impress. You do, Boo. You do. Trust me. 

It was also good to see people we see often and who work in the same building but rarely pass by each other’s corridors talking together. And it was just brilliant for the first time to seem the army of healthcare professions who helped him not as individuals, but as a team, sharing ideas about problems (getting appropriate utensils/cutlery, for example, to engage in assisted self-feeding) and services he needs access to now or soon (such as communication aids).

It was great to see them focus on what he could do, not what he couldn’t. It was fab to learn that they see no reason why he shouldn’t move to the nursery room to be with peers his own age (I was both thrilled and broke out into a cold sweat when then said this, I must admit). And most of all my heart skipped a beat when they said that there’s no evidence yet (things can change, of course) of cognitive disabilities. His speech delay and problems are, so far as all the flash cards and other tests put his way recently suggest, are motor in origin. When I saw the brain scan that showed the extent of his PVL (I can see it now if I close my mind’s eye), I could never imagined that this would be possible. One set of challenges, at least, seem to have been dodged. 

We even spent a bit of time in the meeting joking about things, too. Mainly about how nutty I am. About how crazily I research things; how I take pride in resourcing things that are ‘unresourcable’; about how I take my parent-carer homework very seriously (I even have a laminator now, don’t you know). But as the meeting went on, it became abundantly clear that we will need all that nuttiness and a whole lot more over the next 1-2 years. Because finding and getting others to agree on the appropriate educational setting for Boo is going to be, in the words of someone at the meeting, ‘one hell of a hill to climb’. If you have a child with additional needs, I didn’t need to tell you that, did I?

First there are the challenges of the new system for SEN provision. No statementing now, but EHCP, a new system that is not yet fully understood by anyone, so far as I can see, even those piloting it, or being piloted in it. Then there’s the particular challenge that Boo presents, the ‘square peg in the round hole’ analogy was used over and over. I may deck the next person who uses it (only in my imagination, of course).  

What do you do with a severely physically disabled child who seems cognitively age appropriate? What do you do with a child whose barriers to learning are primarily bodily? Technology can help meet those challenges, but it can’t provide the hourly physical care that Boo will need. Technology can’t do his his stretches for him, remind him to move the position of objects around him so his tight arm muscles don’t shorten. Technology can’t help him go to the toilet or play stuck in the mud in the playground.

People can do this. But getting LEAs to fund those people, for the right number of hours, the right kind of person? Well, that’s a different story? And do we even want Boo to be in mainstream education, which to my surprise, his developmental consultant thought we should push for? Do we want him to be likely the only severely physically disabled child in his school? The child who is always a problem from the school’s point of view (no matter how caring the institution might be).

We have been told that there is no school in our county that seems provisioned to meet Boo’s particular needs. Mainstream with support might be possible, even desirable, but persuading those we need to persuade will be tough. And finding the right mainstream environment would be hard indeed. But then SEN schools near us don’t seem right for Boo either. ‘They wouldn’t want him’, we were told rather bluntly. SEN schools in other nearby counties are not a square fit either (see even I’m using that bloody awful analogy now), and getting agreement for out of area funding and transport has been described as ‘very challenging’.

And then there’s the biggest challenge of all: Boo is not yet two. Not till next week, that is. He shouldn’t be two for three months, of course. And when I think back to Boo 12 months ago and Boo now, well… let’s just say a lot can change and it will. Often for the better, but also for the worst. No one in their right mind can predict anyone’s future when they are 2! 

So I now have an even longer to do list than normal. I have more appointments than ever in the diary or to make. Parents of children with disabilities who have opted for different educational systems to meet. School visits to arrange and liaison workers to meet. But it’s good to be prepared. And this matters too much not to take seriously. So I will do it.

But in the process of dealing with laws and LEAS and words that unhelpfully reduce our children to problems (putting the words Care and Plan into the EHCP doesn’t change that, folks) I don’t want to forget what the TAC meeting confirmed. Our little boy is bloody amazing. And we love him and will fight tooth and nail for him so that he has every opportunity to maximise his physical and cognitive potential, no matter what that is, or where it needs to be realised.