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?

Wednesday, 22 October 2014

...And still, nothing is resolved

Today, we had a meeting at Adam's school with the Transport Manager, Nicola, a representative from the Council, Karen, acting as a mediator and also the Headteacher, Heather.  This meeting was arranged because Transport did not attend the last one on 11th October - if I'm trying to be very gracious about it, then let's just say there were misunderstandings as to whether or not they needed to.  

During the meeting, Nicola demonstrated two different types of "harness" options, and described a third, each of which are designed to keep escaping children in their seats on a bus.  This is particularly relevant for children with cognitive disabilities, including autism, which prevents them from understanding the consequences of their actions.  It was certainly interesting to see these options as they may be something we might need to consider in the future, when Adam is older and heavier if escaping remains an issue for him but each of them hinge on the child sitting in the ordinary bus seat.

Nicola also made it abundantly clear that she is not, under any circumstances, prepared to offer Adam a carseat and that no child over the weight of 18 kilos ever will be offered a carseat on the buses.  When I reminded her of an earlier conversation between us, she conceded that a 25 kg carseat had once been provided for a specific child with "floppy baby syndrome" who was unable to sit up independently, but insisted this was a special circumstance based on that child's disability.  She also said that information I had received from a number of other members of staff who have told me that it was possible to provide carseats for children over 18kg's was incorrect.  Her opinion is that only children she would class as babies (under 18kgs) need a carseat on the buses.  Nicola also said she has now issued a transport wide order removing ALL booster seats from the buses because she believes the only purpose in a booster seat is to allow a child to look out of the window.  She will not concede any safety benefits to a booster seat on a bus.  When Chris challenged her on this removal of booster seats, saying that he has seen two separate children on buses in the last week riding in booster seats, both of whom are larger and older than Adam, she said this is contrary to her instructions and that these booster seats will be removed.

Nicola also insisted that the service provided by transport is a "bespoke" service which meets the needs of each child and that she cares for the children on transport as if they are her own.  She explained that the transport system has (thankfully) never had an accident and therefore is very safe.  She also described the various emergency procedures that are in place to deal with medical or behavioural emergencies.  However, it seems is clear to me that the service is only bespoke so long as what is requested falls within her very narrow categories of what she is willing to offer, and does not include either carseats or booster seats.  I struggle to see how she is valuing the children as her own if she is unable to respond or adapt to a parents simply stated request that a young and profoundly disabled child should be transported in a carseat.  She also said she believes I am very over-anxious about Adam's safety because he nearly died at birth and acknowledged I may believe her to be entrenched in her opinions. When asked what procedures are in place to appeal her decision on carseats, she at first said there are none but eventually accepted that Karen will be in contact with details of the appeals and complaint process (part of which I have already triggered a number of weeks ago when submitting a complaint to the council and also writing to my MP seeking his help).  An ombudsman has been mentioned.

In the end, as things began to go distinctly downhill, Heather brought the meeting to a close identifying that we were, once again, effectively at a standstill.  If Adam is to be transported on the buses, then I want him in a carseat and Nicola is not willing to provide one.  Various other options are being explored by a number of other departments in the council including Children's Specialist Services and Family Connect which include:

- The possibility of funding and/or offering staff to Adam's mainstream nursery to allow him to attend there before moving on to The Bridge, although even if this was an option, it would be time limited as Adam "ages out" of nursery by next summer.

- The possibility of finding and/or funding a specialist childminder who might be able to care for Adam in their home around The Bridge's school hours.

- The possibility of retaining a specialist agency carer who would come to the house to "cover the gap" between when I need to leave for work and school opening and who would also transport Adam to school (and if this were to be the case, then I presume I would be allowed to provide a carseat for this).

I can't help wondering how much any of these options will (or are) costing the council, including the time spent by various members of staff in these meetings and how this compares against the cost of a carseat.

In essence, nearly two months later, there are still no solutions.  There are various options being explored and I am grateful for Karen's work in attempting to work through these, but two formal meetings, various individual assessment meetings and extensive telephone conversations and we are still no further forward in terms of any concrete solution.  There will now be another full professionals meeting scheduled at Adam's school after half term at which we will (hopefully) find out if any of these possibilities can actually be offered, as opposed to just explored.  I will once again be writing to my MP to update him on the situation as he has kindly expressed an interest in it and has already written to the council on my behalf, who assured him they were dealing with the situation.

What else can I say?  I'm tired.  Frustrated.  Confused as to why the provision of a carseat for such a young and profoundly disabled child seems so impossible and yet, not willing to give up.  As I said in the meeting, for me, Adam's safety comes first and until and unless I am absolutely convinced he is safe, then I will not bend.