Every child matters...or do they?

Just about a year since our last post, it hasn't always been easy but Amira is making good steady progress, however once again we have hit another sticky patch with the council, their arbitrary decisions and the impact they have on real people, on children who ask for nothing more than a chance to access the education they are entitled to as a basic human right and we need all the support we can get!

As you know, way back in April 2012 Amira was excluded from her mainstream school as they just couldn’t cope and were at ‘crisis point’, they decided that the only option was to kick her out pending a further review, referral for diagnosis and full SEN statement (a process which had already started months earlier), she was 5yrs old! … After a further 6 whole months of battles with panels, doctors, therapists, local councils and even MP’s Amira was finally allocated a place at a fantastic Special Needs School in October 2012, and although the ride was by no means easy she settled in and has made outstanding progress in the time she as been there. However, she has yet to attend school for a full day, this is due to ongoing transport problems for which the local council are responsible.

The official diagnosis is Severe Autism (Core) with ADHD and PDA, she also has problems with gross motor skills and can’t walk for more than around 50yds before becoming extremely fatigued. When she started at school she received 2:1 support until she gradually moved on and was able to change over to 1:1, recently she has started to be integrated into a classroom with another small group of children but with her support worker still by her side. Amira is generally a very happy little girl but one of her major trigger points are ‘transitions’ and change which can cause her to become extremely anxious and distressed, often leading to a major meltdown and the accompanying violent outbursts. To help combat this as part of the care package her school and therapists implemented a transport system where she is picked up from home by a bus with just a driver and her highly skilled and experienced 1:1 support worker, this allows around a 10 min gap between home environment/parent and school giving enough time for her to adjust and prepare for the day ahead…..perfect, exactly what she needs, sounds simple, yes?

Well not quite, up until now the school have provided this transport arrangement on an ad-hoc and temporary basis…. fast forward 13months and because the council STILL haven’t agreed to release the funding required the school are still providing it themselves, using their own resources, time and money which they are unable to continue. The school have been fantastic and in addition to their outstanding work with all of the children they have really gone out of their way to support Amira’s overall well being and development. However, as this arrangement was never supposed to be permanent it has meant that Amira has to wait until all of the other children are sorted out before there is a bus and driver free to collect her and the opposite at home time, she needs to leave earlier to allow the bus to get back to take everyone else home so for over a year Amira’s school day runs from 10am til 2.30 pm….a full 2hrs per day less than any other child attending school (mainstream or otherwise).

After yet more months of battle, ignored phone calls, unattended meetings and pressure from the school the council have FINALLY come to a decision today…in their infinite wisdom they have concluded that the funding WILL NOT be released to provide any transport for Amira!! Their reasoning is that she cannot have 1:1 support and travel it has to be one or the other so basically if they provide the transport they will withdraw the 1:1 and vice versa.

Now, correct me if I’m wrong but this seems grossly unfair to me! Access to education is within a child’s basic human rights and failure to provide this is not only in direct opposition to that but also in breach of several laws not to mention the morality of it. Amira is coping well at school, with full 1:1 support, by withdrawing that the council would be denying her this access as she would not be able to cope with the demands of school without it, however, by removing the transport facility this also has the same effect by setting her up for failure from the outset as she struggles with these transitions already, this is specifically outlined in her statement of special educational needs, which legally should be adhered to by all service providers involved in her development and care, including the council! Aside from the practicality of it (my son, Amira’s brother, attends a different mainstream school and although it would be great it’s just not possible to deliver 2 children to 2 different schools at the same time), there is also a safety aspect, if Amira did not use the school bus she would go in a regular car with me either alone or with Tariq for the 1.9mile journey…now, as Amira has difficulty with travel and transitions at the best of times as there would be no gap between the 2 different environments the likelihood of a major meltdown episode en route or on arrival/departure is extremely high, it is unsafe to drive while she is distressed both for her own safety and others as she can lash out at the driver etc in addition to this there is also a time factor, if she is mid-meltdown this can last anything from a few minutes to a few hours, so the current set up works well as the support is there.

What next, appeal the councils decision (again), see a solicitor and go down the prohibitively expensive legal route with a possible tribunal, launch campaigns to have it overturned, use social media to apply pressure on her behalf, contact local news papers to shame them into action, escalate it even further and contact MP’s and rattle some cages that way?

For legal reasons the school have asked not to be identified in any media, which is understandable as we have no issue with them at all, on the contrary, they have been outstanding throughout. Their 'unofficial' stance is the same as ours, they have advised legal action and are backing our appeal, they are continuing to pile on the pressure to the council and to Educational Welfare from their end and have included reports from not only Amira's therapists and support staff but also from their own transport manager. They have also made it 100% clear that the 1:1 support can not be used as part of any kind of barter system and is completely non-negotiable. The transport manager has examined our vehicle (VW Polo) and has declared it un-fit for the purpose of transition to/from school as there are no adequate restraints etc, he advised that the potential extremes of Amira's behaviour make it a dangerous situation and an accident just waiting to happen and has 'strenuously recommended' that transport be provided. Her support team have also advised that she is not ready for this change and this would lead to 'unbearable stress and anxiety' which would have a huge impact on her progression and ability to learn.  Added to that the potential  impact on Tariq, on his education, the potential for him to be late on a day to day basis, to be picked up early or to be waiting for pick up, to be 'different' from everyone else, it is hard enough for him so really don't want to put more on to him, it's hard enough being a 5yrs old kid who's sister has special needs!

Amira has never asked for more than she needs and deserves, she doesn’t want any preferential treatment, all she wants to do is to go to school. She can’t speak for herself so I will be her voice, maybe together we can be heard and with your support maybe we can make a difference.

Thank you for taking the time to read this.