Battling The System

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.