There are so many agencies, that we have to link into,
To get the support that GG needs – it’s more than just a few,
It seems crazy to us parents, of disabled kids,
There is no co-ordination – it gets everyone in a tiz!
So here are a few examples, of how crazy it can get,
Two children, quite similar, whose needs should both be met,
One is given a wheelchair but cannot get a blue badge for parking,
The other has the badge but is refused a chair – it’s just barking!
Then there is another child who is physically a bit more able,
Who receives DLA for mobility at the higher level,
The other who sleeps very little – awake a lot of the night,
Could not get the care element, despite being offered respite…
Then there are the school places, that prove such a fight,
It is so important for our kids, that the school is right,
Catchment areas irrelevant, if your child would be better off elsewhere,
We appeal, complete masses of paperwork and in the main – we get there.
But then comes the issue of transport, how this is treated is bizarre,
The inconsistency in approach, the experiences are dire,
Once a school is in the statement, transport should be there,
But LAs, strapped for cash, will argue it – it’s so unfair.
The lack of resources could fill, several different blogs,
We know the world we live in, but it makes it such a slog,
Please think about the consequences, of not providing support,
Many more claiming benefits, more parents out of work.
At every stage we battle, and appeal the crazy decisions,
That agencies decide upon, in total independence,
Our plea is for co-ordination, a central point to go,
To someone who can advise us, someone in the know.
More often than not as parents, we don’t know what is there,
Don’t know what to apply for, and miss out on our child’s share,
A point of co-ordination, would ensure this didn’t happen,
And cut down on costs from undoing the mad decisions.
As some of you will know – if you are a regular follower,
Gorgeous Grace has no diagnosis, and this adds extra bother,
No box to tick, no package offered, at times it is rough,
Please listen to us, help us out, and make it all less tough.