“It’s Basically A Constant Stream of Paperwork”

I never had the ambition to become a secretary or administrative assistant. I quite liked community pharmacy to be honest. But I do more paperwork now as a “stay home mum/carer” than I ever did in pharmacy – and I used to do the end of month claims back in the day!

From the get go, handling Jack’s affairs have been a challenge. Here are just a few of the things we deal with:

  • Medical appointment pre-information: many appointments come with questionnaires to fill in to help establish a baseline. Such is true for Better Movers and Thinkers, the physical disability occupational therapist, the sensory processing occupational therapy assessment, and for the Children and Young People’s Service (CYPS) or CAMHS as they are known in other areas.
  • Subsequent reports from medical appointments: all of these need to be kept safe, because everyone involved with your child should have a copy, and your copy is usually where they take their copy from. They also come in handy as evidence for referrals if you do them yourself, or for disability benefit claims.
  • DLA claims: disability living allowance is to help fund the daily needs of the child. It can be used for a whole host of things, but the application can be absolutely hellish. Last time I submitted a claim for Jack, I had 87 pages of evidence. Each one was photocopied, indexed and labelled with a page number, as well as Jack’s name and date of birth. And I had to fill in a small novel too!
  • General school paperwork: much the same as any other child, including homework, diary signings and filling in his daily communication book if needed.
  • EHA paperwork: Early Help Assessments are basically a way of generating regular meetings of the team around the child. Everyone involved with the child is invited to an EHA meeting, but usually in my experience it consists of just the SENCo, the class teacher, parents, and perhaps a health visitor (before age 5) or maybe a paediatrician if the meeting is of a more serious nature. I’ve been to meetings where it’s literally me and the SENCo, and a page of notes from the class teacher. But it ensures everyone is accountable for the progress of the child.
  • EHCP meetings: you may have heard of a Statement of Special Needs. This is the new version, an educational healthcare plan. This is basically a document that details the provision required by a child and ensures local authority funding for said provision. The initial plan has a multi-disciplinary approach, involving an educational psychologist, and anyone else involved with the child.
How I feel 90% of the time!

This Friday, we were meant to have an EHA/pre-EHCP review meeting, as Jack has had his EHCP for two years next month, and so it is due for the annual review.

At our last meeting, concerns were raised that we may lose a funding band for Jack. In mainstream schools, funding is offered in four bands, the highest of which gives the child full time support from a member of staff. Jack has Band 4, so he has a full time stalker (I’m sure she would laugh at that!) who works with him on a one-to-one basis and in small groups for activities such as Lego therapy. I hope she reads this one day so she can read just how highly I think of her. She is actually one of the kindest, most patient people I have met, and she works at an extremely proactive level, ensuring her time with Jack is well spent.

Since that meeting, Jack struggled quite badly for a whole half term. He was being contained, rather than educated, and was uncooperative and entirely resistant in lessons. When the SEND team autism/challenging behaviour specialist came to school to work with him, she flagged that he was doing well with his speech and language, but noted a lot of behaviour that pointed towards possible attention deficit issues, and so that may need to be investigated. This in itself, although possibly involving the long and tedious process of being referred back to CYPS, could be enough to convince the local authority to maintain his high level of funding for another year.

I have many concerns about year 3 – for one, the classroom is in a completely different part of the building, upstairs. I am also concerned that there will be a more demanding timetable, more demanding work, the classes are all shaken up (yes, the kids he knows and has gotten to know for 3 years will be split up and mixed with the other classes)… it’s all change. As we enter the summer term, I know that nothing has been done yet to prepare him for the transition, and I hope they do something to help him manage this before it’s too late.

My biggest concern, however, is that the EHCP information is pretty out of date. Specifically, the section that details the level of provision he needs is in dire need of a revision by an educational psychologist. I have been told by the school to GO THROUGH AND HIGHLIGHT/AMEND THE PLAN AS I FEEL NECESSARY and to submit it to them before the meeting. Fine, it’s a royal arse-pain, but I will do it. But what if they need him reviewed by EdPsych? The big meeting is three weeks away. PANICPANICPANIC.

My job this weekend, alongside interviewing 6 people for my mental health awareness week posts, is to sit with the post-its and highlighters and to draw pictures all over the final plan from last year, and hopefully amend it to ensure my boy gets the funding he needs and deserves.

I have no educational background. I have no medical background or SEND experience other than what I live every day. I thank the universe every day that I was blessed with having the intelligence to be able to research effectively, so I can find the information I don’t have. The task ahead feels like a mammoth one, though. I’m not even sure I’m up to it. But if I don’t do it, who will?

If anyone has any advice or information to share, please comment or email stephaniewardofficial@gmail.com. I’m all ears.

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