Friday, 31 October 2014

A light somewhere inside the tunnel

Finally, after weeks and months of being told "no", there is some light inside the tunnel - and I'm delighted to be able to say so.  After it became perfectly clear that nothing was going to be easily or swiftly resolved with Transport, I received a call saying that an agreement has been reached to fund a 'breakfast club' arrangement for Adam.  

In other words, Adam's mainstream nursery, ABC, have managed to arrange for a dedicated member of staff who will come in for the 7:45-9am slot.  She will give Adam his (second) breakfast and will then take him across the building to The Bridge (either walking or in the special needs pram that is now on loan from The Bridge for his use) for the start of school at 9am.  The Council will fund this member of staff and the cost of the breakfast club to ensure that Adam arrives at school safely and (hopefully) in a settled mood.  

It's not a permanent arrangement as it has only been agreed up until Christmas on the basis that they still hope to reach a resolution with the Transport team but it's a huge start.  From my perspective, it means that from next week, I will be able to arrive at work on time for Morning Prayer, as I am required to do, and I will be able to be confident that Adam will be safely cared for and transported to enable me to do this.  Of course, the battle is not over because there are only two months until Christmas but at least it buys some time and I am so grateful for it.

In the meantime, I have also received - and forwarded to the Council - a letter from one of Adam's paediatrician's in which she *very* clearly supports the need for Adam to be transported in a carseat. After detailing all of his disabilities, and the challenges these pose to him and to anyone caring for him, she says:

"Adam, as a result of his Autism, can display very challenging behaviours because he often does not understand the situation he is placed in socially or because he becomes frustrated or anxious.  Adam has also been observed to be extremely active and difficult to contain.  His behaviours can include physical aggression in the form of hitting, screaming and kicking.  

In conclusion, I feel Adam's complex medical needs are such that he theoretically could pose a risk to the other children as well as to himself if he is not appropriately restrained when travelling on the school bus.  Whilst he is still only 31/2 years old, he has the mental age of more like a child of 2 years, and who because of his Autism and sensory difficulties cannot understand the world around him, he can respond with unpredictable behavioural outbursts to any perceived changes or things he does not understand.  Hence it seems most appropriate for him to travel in a minibus seated in an appropriate sized car seat that will ensure his safety and that of the other children.  I would have extreme concerns about him being seated using only an adult seatbelt that I believe he could squirm out of and particularly when he becomes more animated and physical during the times he is hyper stimulated because of his sensory problems and Autism.  I would advise that you undertake an individual risk assessment for Adam, if you have not already, with regards to transporting him safely on school transport."  (Emphasis mine)

I was absolutely delighted to read this letter because it is a very true and accurate summary of Adam's needs and the safety risks associated in transporting him.  While I do believe I have always been making a strong case in favour of using a carseat to transport Adam, with this letter, I now genuinely believe the Transport team cannot ignore it, because to do so would be to ignore medical advice, and from the paediatrician who specifically deals with - and is an expert in - Adam's autism.  To even consider ignoring such advice would place them in a very precarious position.

We now have another professionals meeting scheduled, based on the fact that the one directly with Transport failed to resolve the situation and I will keep you updated with what happens.  

And yet, the one final question that is lingering in my mind is to ask where the bulk of the costs now lie:  if the Transport team had agreed to purchase a suitable carseat in the first place, this would have cost anywhere up to around £300 for an ordinary one suitable for Adam's age.  If the decision had been taken to purchase a special needs carseat then this could have cost as much as £900.  Each of those are of course significant costs.  But.  At this point, how much has it already cost in staff hours spent in multiple meetings discussing this situation, in more staff hours researching other alternatives, more staff hours in putting those alternatives in place even on a temporary basis and still more to cover the next phase once that arrangement expires?  Then there is the cost of funding the Breakfast Club, paying the wages of the staff member who will be looking after Adam, every day, five days a week for at least two months.  

Now, ultimately, this IS the cost of looking after a disabled child - it does take staff time, different solutions and different paths towards funding; BUT does the cost that has now accumulated in dealing with this situation really compare to the cost of simply purchasing a suitable carseat in the first place?  Does the cost really compensate for all of the stress that both I and Adam's Dad have faced, along with the stress Adam has faced with the changes to his routine, all of the time that both of us have lost at work and the pay that Chris has lost in unpaid leave to attend these meetings?  

Longterm, while I AM grateful to have been offered an interim solution, has it really been the best, most cost-effective one?  I genuinely hope this is something that will be noted in the Council's files as they consider the way this situation has been dealt with.  What is it that is all too often said, "lessons will be learnt from this" - will they?

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