Making a draft statement: let battle commence

And so, finally, it arrived. The draft statement. The piece of paper I have been looking for on the doormat for a week is here. I got back from work at 7 last night and it was on my desk waiting for me.

I knew I didn’t have time to read it properly, but I just had to know had we got more 1:1 for Boo. Had we got what he needs? I was prepared for it not to have as much as we’d like, but I expected more. Everyone involved in his care and at his nursery knows that this is what he needs.

But of course, we didn’t get what he needs. What we got instead was a copy and pasted, poorly constructed document that is so drafty you can probably feel the gale blowing even if you are reading this in Scotland. (I am in the South East in a LA authority which shall, for now, remain nameless, although that will change at some point, I’m sure.) There is, in fact, no mention of quantified 1:1 support anywhere in Boo’s draft statement although the phrase is littered in the appendices that health professionals wrote.

The draft statement commits the LA to nothing. Boo’s needs, many and complex as they are, are mostly documented in part 2, but provision is not matched to these needs and is only quantified once. Once! Apparently, he needs 6 OT visits and one review. A year? A month? A term? Can you not see what my 6-year-old could? That this is important information. That this sentence of the statement is utterly meaningless without a specified timeframe.

I then look closer. There is no mention of flat-level access. Boo is a child with no indepdendent mobility who will be a wheelchair user (as documented in the statement) and in the facilities section of the document there is no mention of flat-level access or to an accessible changing area/toilet. No mention, as several appendices make clear, that he cannot feed or drink on his own. That his drinking, especially, has to be carefully supervised?

Who wrote this statement? This is the worst cut and paste job in history. You know the story about monkey with typewriters, who, given long enough, could write the complete works of Shakespeare. Apparently the same isn’t true of this particular statement writer.

So I phoned his case worker. A very nice, competent professional. She explained why the lack of quantification might be there: because it isn’t in the reports completed by the professionals (they, incidentlly, are actually not asked to quantify it in those terms, as two have pointed out to me today); or because the LA has in mind a specialist setting for Boo (one I know none of the healthcare professionals involved in Boo’s care or we feel is suitable for him) where therapy is delivered on site (although actually, it still should be quantified even if they ahev that setting in mind, you know lovely LA).

And then came the worst news of all. I was also told categorically that we will never get more than 15 hours 1:1 support for our son until he is 5. I was told, somewhat condescendingly, that we had started this process rather early. I in turn reminded her that statements and new EHCP start from 0. It’s clear what the LA thinks: I need to stop work to look after my son. He needs to be in nursery the bare mininum of time. Never mind the huge benefits (social, developmental, cognitive) to him being in an educational setting. Never mind that we know children, 3 of them very well, in 3 other LAs in the South East who have complex disabilities (2 with CP) and in in mainstream nursery who get 26 hours of teaching assistant support via a statement so that their children can access the EYFS curriculum. That’s not how our LA does it, apparently.

I hate the phrase postcode lottery. I hate the reality even more.

And so now we enter the negotation phase. We have to write the statement for them. Do their job for them. We have to take all the info they forgot to cut and paste in the appendices and add it in (cause you know, we are tripping over time as parents of a disabled child). We have to quantify things for them. And they will consider our recommendations and judging by the conversation with the case worker, they will surely reject them.

We are headed for tribunal. I know it. I have recommendations for excellent solicitors with proven track records, but this will cost us more than £10,000. I know there are legal aid options. I also don’t know any that have been successful.

We are trapped, locked into a battle with the place we live. I wish we didn’t live there. I wish we didn’t live in the LA with such an appalling reputation when it comes to SEN provision. What can we do? Move? Leave my job? Lose our home? I feel trapped.

I haven’t slept properly in days because Boo isn’t sleeping either at the moment. I am so overstretched at work that I cannot cope. I am typing this in my office in floods of tears, hoping no colleague knocks on my door. I can see depression or worse beckoning me. I am going to crash. Just at the time I most need to help Boo. I can’t crash. Not until we’ve got him what he needs, at least.

I knew this would happen, but it doesn’t make it any easier to accept. I have never wished Boo was different. But right now I wish that almost everything about our lives was, most of all where we live.

You are crippling us local authority. You are destroying a family, our health and our happiness. And most of all, you are failing in your responsibility for a young, vulnerable child. I hope you can sleep easily at night.

I know I can’t.

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8 thoughts on “Making a draft statement: let battle commence

  1. Anonymouse

    Appeal, and know that it likely won’t come to a hearing. You can do it yourself, i’ve done it 3 times and never once was it actually heard in court, the LA pulled out each time because they knew they would lose. Get that appeal in right now, the clock is ticking and every minute you wait adds another day to your hearing date. Fill in the bare minimum, ie which parts you are appealing and get the forms in, you can always submit more info as additional evidence later. And please know that many of us have been here and dealt with the bullshit. We are here for you and we are listening. And sending virtual hugs. Xx

    Reply
  2. Helene

    I am so sorry this is hard. Don’t be rash about rushing to lawyers. It’s been a while but I know you a bit from your writing.( does that sound a bit spooky!) Feel I can say as a lawyer that you can fight the fight for Boo. You know him best, you are his very best advocate with only his interests at heart. You won’t have an eye on time sheets and costs etc. You are bright, articulate and a fighter so get reading and researching and start preparing to fight (as I know you do with passion and commitment) for your wee boy. If you do decide to use lawyers spend time preparing a full statement of background right from birth (or even before!) and a file of supporting documents. It will save them time and you money. Better still I reckon do it yourself. Write, write and write! Tie that LA in knots and ask as many questions as you can. Write and challenge. They won’t answer but it will help your case. Get expert opinions too, in writing that detail your son’s needs. Sadly these, mostly, do cost but you need to fight with fire.
    Go girl. You can and will do this. Blinking LA ….horrifying to think of the budget/power that languishes in the hands of the incompetent! x

    Reply
    1. mrboosmum Post author

      Thank you for the vote of confidence. I feel like I can be a good advocate for Boo but do sometimes feel like I’m playing a game when I don’t know the rules. Or at least, I know the rules and have read the Code of Practice but I don’t fully understand how LAs can (and do) interpret it differently. But I am trying. I feel like the system relies on parents and families breaking on so not resisting and I am determined not to let that happen to us. But I also feel a little bit broken, not by Boo, by prematurity, or cerebral palsy, but by bureaucracy, incompetence and systemic failures.

      Reply
  3. Kasia

    Keep up great work. I know what you are going through. I went through the same and it was very difficult. I do not have your writing skill so I did not write about it on my son’s page but sometimes I wish I had. If I could just vent … I can see now, reading blogs like yours, that I was not the only one. I decided to take my LA to Tribunal but they pulled out last minute. The Statement I got is still rubbish but it is better what it was initially. Just keep pushing as long as you can … I know it is hard. I am working full time, even to attend the meetings with LA is a challenge… how much time off work can you have … but keep fighting!

    Have you had any help from Parent Partnership? They helped me a lot ….

    Reply
    1. mrboosmum Post author

      Thank you. It is good to talk to people who have been or still are in the same situation. But I wish none of us was in this position. It is so awful. I will keep fighting and I will keep bringing this to people’s attention but I don’t think people understand. I have got a couple of days off work to try redrafting the statement but will have to make up the time. If only days lasted 40 hours. Good luck! And thanks so much for reading and commenting. It means a lot.

      Reply
  4. Victoria Welton (@VicWelton)

    I am so sorry to hear this lovely and I hate hearing that you are upset. I have never understood why LAs make it SO difficult for parents of SEN children when they have a hard enough time already. I remember my sister going through stages of it being straightforward and then REALLY hard. She had to appeal on occasions too. I wish you the very best and have everything crossed for you that it gets resolved soon. Thank you for linking to PoCoLo 🙂 x

    Reply

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