Wednesday, July 18, 2018

The Joy of Red tape!

Oh, I do wish I was talking about the pretty wrapping type!

Alas no: Red tape, when trying to do anything for a child with additional needs, is such a joy!

We are currently in the midst of a ton of the 'so called' red tape, sorting out things that are required, for him and us, to continue living a full life.

Firstly is his wheelchair. Ajax has hyper-mobility, he can walk, but any sort of distance and his hips, knees and ankles start to ache and get tired. He starts tripping over his own feet, which then leads to falls, which lead to a refusal to leave the house again in case of injury. 
There is also the social aspect of it. Without said chair, we wouldn't be able to get out of the house, as a family. He struggles with too many people and sensory issues around days out, his chair gives him his own space. When he's had enough, he will throw a blanket over his head, put his headphones on and block the world out. This means the rest of the family can continue to enjoy the day and he is calm.

The point is, he needs this chair.

So, his wheelchair, which was provided by his physiotherapist, is getting a little small. When it was delivered, we were told it was fully adjustable, just ring the number in the booklet supplied. So we rang it.....

Here we go!

The number supplied is no longer in use, please contact this other number.....

Ring other number to be told that he would probably need a bigger chair....

However, they can't simply request it, it has to come from the physio....

Contact physio, to be told that: "as he hasn't been seen for over 6 months, he needs to be referred back to us, via the Dr, so we can sort this"....

(Funnily enough, we wanted him back at physio, as his walking has deteriorated a bit)

Go to the Dr, to be told that she wasn't sure how she referred him back to a particular physio, but she would look it up and sort it!

Sweet Lord! I only want his bloody wheelchair adjusted!?


On top of all this, we are starting the statementing process. Here in Wales, we still have the Statement of education, up until now, we haven't required one, as his mainstream school has made special provisions for him, and others like him, in the form of a discreet class, just 5 children next year.

The statement basically makes sure that provisions are in place, for the next level of his education. He will require a special needs school, or unit. 

The red tape bit?

Basically, it will take 6 months for a group of people, that have never met my child, to collate information that decides my sons future. I sign a form, a Education Psychologist visits him at school a couple of times. We all have an opportunity to have our say....then these strangers decide.

Because that makes sense, doesn't it?!

I would just like to say: I would not say no to a gift wrapped in the other type of red tape!

Or coffee

Or cake.

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