Battling the system

Many moons ago I started to write a post about the introduction of the Education and Health Care Plan system.

It wasn’t a bad post, I just wasn’t entirely comfortable writing about something that I wasn’t qualified in. I didn’t want to give the wrong advice. For someone to rely on what I said as being totally accurate. I felt that I owed my fellow SEN parents that. So I chose to not post it.

I see and have read a lot of information about the new SEN Code of Practice, EHCPs and what it means. A lot of what I read is terribly complicated and detailed.

As a former solicitor I’m used to reading legal documents, regulations, acts and codes. Even for me some of the things that have been shared to help are somewhat heavy to digest, particularly when these damn emotions get in my way. When you’re desperately seeking for an answer to a question, you get washed over with information which doesn’t answer your question. You get lost.

I undertook an IPSEA course about the new SEN Code and this helped me immensely. I’d read the Act and Code before and I thought I knew what it meant. Now I know that I’m right in my understanding. Knowledge truly is power.

When professionals tell you things, you assume that firstly they are telling the truth, secondly they wouldn’t mislead you and lastly that they actually know what they’re talking about. Trust me on many occasions they don’t. (I know that you’re shocked! 😁)

Evie has had her Statement of Educational Needs in place for many years now but it was time (according to her local authority) for transition to the new EHCP. So in January we had her transition meeting. At these meetings all professionals involved in Evie’s care are invited. Her SENCO, her head teacher, her 1:1, her teachers, her Speech and Language Therapist (SALT), a representative from the Local Authority and her Occupational Therapist.

Everyone prepares reports prior to these meetings, views of the child and parents are sought too.

Her OT didn’t attend. Didn’t file a report either.

After this meeting Evie’s paperwork went missing at the Local Authority. From what I can gather it just disappeared. We heard nothing. Her fab school SENCO chased up the LA regularly. I knew we were unlikely to hit the timescales denoted in the EHCP provision but I could live with that…provided that it was in place by the time Evie started school again in September. Come June and we had no news so we (her SENCO and I chased again). I impressed on the LA the importance of this document being in place for start of the school year. It transpires that she had a change of Local Authority Officer, yet no one had told us.

New school year is the time when Evie struggles. This year there are big changes ahead…no longer an infant but a junior. Different teacher, different school entrance, even a different and larger, easy to hide in (and potentially escape from) playground. From past experience we have learnt that Evie can struggle with change. She becomes anxious and her anxiety has physical manifestations. This is awful. For her. For us. For her teachers. So yes I am tense in the build up to the new school year.

We wanted to minimise that risk. We wanted to be prepared should our worst fears happen. Everyone who attended that meeting in January remains on high alert for the possibility of Evie struggling.

What I didn’t want was to have paperwork outstanding. I wanted to have nothing hanging over our heads…that come September we would be ready.

So in July I finally receive the draft EHCP. A few minor amendments needed and one specific requirement to specifically include the OT provision. Evie’s SALT provision is so detailed in her EHCP. Her OT provision is bland to say the least. To be honest it’s a bit comparable to the support she’s had to date (bar one lovely awesome OT).

I sent back my requests for amendments and was surprised to receive exactly the same copy a few weeks later still in draft form. It was almost as though the LA hadn’t realised that they had sent it before. When I spoke to them it turns out that they didn’t know that they had sent it and hadn’t read my response.

After a touch of chasing around I then discover that the OT has never compiled a report despite specifically being asked to do so back in January. So we have to wait.

Today I loudly complained to the OT department – I wasn’t prepared to wait for the promised phone call (as they rarely happen). And as a result have a very quick appointment for an assessment and hopefully (!) this will be resolved and signed off soon.

When I think about all of this I remember that I’ve actually asked on social media before “what does an OT actually do?” as I’m damned if I know. I don’t know what provision they’re supposed to have in place. I don’t know what is reasonable to expect. I feel that as Evie is relatively able in some respects that she is abandoned. Her fine motor skills aren’t great. Her gross motor requires work. We don’t seem to have any practical support. Yes here I am feeling as though I’m whinging again. Whinging because I want to be able to help Evie, to make sure that her school have the support that they want to be able to help her too. All we want is advice…

In all of this what really concerns me is what about the children who don’t have an irritating parent like me? What about those whose parents are so broken by the system that they give up? Who looks after those families? Who protects them and helps them? There must be thousands of children without support, or parents accepting the support that the professionals offer. Accepting it because they trust the professionals to help them…when in reality it’s cost cutting or overwork or even on occasion shoddy care. That means that these children don’t get the support that they not only need but they are actually legally entitled to.

As an aside a new report came out today highlighting the lack of support for those families with children with disabilities in holiday time. This came as no surprise to me or any other SEN parent I’m sure.

Many are currently at breaking point. There is such little respite around, 1:1 specialised child care is more often than not prohibitively expensive. And families are left floundering, exhausted, feeling abandoned by the system.

I for one am tired of fighting the system. And I’m worried about what happens to others. I’m so fed up of it feeling as though it’s a them and us situation. These children have a right to be protected and to have the best support reasonably made available to them and their Carers and educators. The continual battle is genuinely exhausting and massively irritating.

Too many of my SEN parent friends are struggling. Awesome parents who are battling the system for transport, Physio, respite, education, even medicine is cheapened so our children have to struggle instead.

I will battle on. I do love a good row, I just wish it wasn’t about my daughter’s support package. I would rather argue about politics any day of the week, than have a heart wrenching battle about asking for help for her. This wasn’t an easy blog post to write. I’ve debated about not being as blunt and not as detailed about what’s happened. I’ve debated about not posting this. Just writing it as a cathartic exercise.

But this is how it is. I want to always be honest and accurate. None of this is our fault and it certainly will never be Evie’s. It’s not her school’s fault. They have supported us through this. They are I’m sure as frustrated as we are. Her SALT provision has always been exemplary. We are so so fortunate in many ways.

And this isn’t even a bad case…some parents have a diabolical time. The stress that this type of thing places on parents is unforgivable. If you’re struggling with the system, know that you aren’t alone. Reach out for help…other parents understand and we try to help each other. Without the support network online of SEN parents and charities such as IPSEA, then we would be truly lost.

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9 thoughts on “Battling the system

  1. We had exactly the same battles and like you I worry about the children who have no one to fight for them. This year as Abi turned 16 we now have to pay for her ‘special bus’ to get her to school. I wouldn’t mind if it was our choice but education/training is mow compulsory until 18 and she needs the bus to get there as there is nothing provided where we live. I just haven’t got enough fight left to kick up a fuss so we went without a summer holiday to pay for it. 😐

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  2. As a SENDCo in a challenging area and a parent of a son, who I have had constant battles to get the support he needs, I feel your pain. It is heartening to read that you both recognise the support from your school and acknowledge the problem children encounter without parents like yourself. I spend hours chasing things up and writing letters for parents to help us get what children deserve. Having had a son through the school system on a Statement, who subsequently managed to go on to higher education and obtain an 2:1 degree, I was hopeful EHCPs would support where Statement didn’t. On entering higher education no one was interested in reading his Statement to find out what support was needed, we had to start from scratch again. We even sat in a meeting and it was questioned whether or not he was capable of doing the course, despite him having an A star at A Level in the subject he was studying. My experience of twenty years working directly with SEND in education trying to get the right support is a constant battle.
    My advice for parents is to find an educational provision with a good, well organised and supportive SENDco and work with them to fight for what your child deserves. As a SENDco I will continue to do my best for all my pupils and their families despite it being a constant battle.

    Liked by 1 person

    1. It sounds as though your pupils and their families are lucky to have you. You have a position where you can fully appreciate how the parents feel and yet can do your best to help.

      We are so lucky. We have a great relationship with the school. Her 1:1, SENCO and teachers have always been amazing with her (and have put up with me!).

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      1. Thanks I would love to have a parent like you ! Many of mine sadly struggle to understand what their children need or fail to attend appointments which makes things even harder. I even had to visit one family at home and tell them if one of them didn’t attend their child’s EHCP conversion that morning (they’d had months of notice and constant reminders) we would be fined!! Thanks for the comment.

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    2. I agree about support from the school.
      I had a reasonable time from the LA and a good EHCP. Yes there are areas which are not exactly as I would like (salt provision is poor but always had been) but the school and I will tackle that together on an ongoing basis.
      In the end is the school who implement so having them on side with good support is the key.
      Don’t expect the plan to be perfect, accept good enough and fill the gaps as you can.

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      1. For me it was getting specific provision down for OT so we could hold them to it. They have been historically so poor with Evie that I wanted school and us to be able to pin them down. If it were SALT I wouldn’t have the same concerns as I know they cooperate and do what’s in Evie’s best interests.

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  3. I’m sorry to hear you’ve had such a struggle on your hands, Kirsty.
    After reading about other people’s experiences of the EHCP process I have come to the conclusion that, when the time comes for us to transition, we can hold the meeting in a phone box (remember them?), there are so few professionals involved with us. SALT and physio stopped when he reached school age. We’ve never had OT input despite requests for referral (made by other professionals), no social workers, either. If he didn’t attend special school we’d be up the creek without a paddle. After waiting 14 months we finally got re-referred to CAMHS for support with his challenging behaviour. We’ve had five visits, though all the things they suggest are things I’ve already tried, I’ve tried them again, just to show willing. At the last visit I was told that part of the problem is that my expectations are very high, as my other children are so well-behaved (I think you’ll find that’s called ‘high standards’, sweetie). At the nursery I’m involved with I have come across parents who have learning difficulties themselves. How are they supposed to negotiate all this? It’s hard enough for a person who’s reasonably articulate.

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  4. Yes. All of this. Though for us we had great OT and reports and pretty minimal SALT involvement…. But yes. A battle. Extra battles, on top of the extra battles we already have. None of it fair. Lots of it easily sorted with a bit of compassion, common sense and listening – why are those 3 things missing so much?!

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    1. Exactly! It’s like a mental agility assault course to access information and support. We’re not asking for blood, just help, support and you know, them to actually do their job.
      The OT issue is rumbling on still for us. It’s a saga of epic proportions. I need to blog when I’m calmer. If only common sense and empathy was sold in Asda! Xx

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