Hello Jess
I am sorry, my post is long, but my question is brief.
It is long because I am tired and I am quite frankly broken.
My question is "Will you listen to us?"
I have a son with complex needs as a result of a genetic condition and I work as an early years practitioner, mainly with children with additional needs.
It feels as though the last few years has seen an already imperfect system crumbling further, leaving families like mine and those I work with having to fight for support in education and healthcare, for their vulnerable children. These are not parents who are fighting from a position of relative strength, but from a foundation of the exhaustion and fear that often comes with having a child with additional needs, often not able to work full time and whilst trying to ensure their other children are safe and happy.
There is a lack of suitable provision for many, many children like mine and those I work with. Educationally, their needs cannot be fully met in a mainstream education system that claims to promote a model of inclusion, but is unable to - in part due to funding, but also because of an educational culture driven by targets. It is also, and this is something that I don't think was foreseen or even considered when special school closures through a policy of inclusion took place, not an environment that is suited for many children with complex needs which may include.... physical health needs, behavioural difficulties, sensory issues, communication needs, mental and emotional health needs and learning needs which may be average in some areas and delayed in others....often all in one complex and vulnerable child.
Navigating a way through a mainstream system for the child and parents can be a bewildering journey, often resulting in anxiety and school refusal in the child. Parents struggling to work in partnership with schools, who let's face it, have a lot on their plates can often be seen as 'that parent', yet another problem laid at the door of schools and teachers.
My son is in a resource base in a mainstream school - a 'solution' that is often put forward as a bridge between specialist provision and mainstream...in reality I dont believe it is working. Resource bases are often over subscribed with children due to the lack of special school places, staff often don't have enough training, children who struggle with change are expected to endure many changes throughout their school week and day and the culture of the mainstream school management determines the ethos of the resource base.
Within mainstream, TAs are heavily relied on as support for a child who can then become more and more isolated in a class as they, understandably, rely heavily on the adult there to support them. A 1-1 is seen as an all healing balm that will magically provide all the support a complex child needs. They Are Not.
Can you send him to special school?"
It often comes up on threads on mumsnet, and is said by pretty much everyone who we speak to in real life...
Where?
Where are the special schools?
Even where special schools are being expanded (our area is one...yay) they are largely for children with specific needs or for children who have a higher level of learning disability.
Alongside the slow mo car crash of education is a healthcare system that we rely on heavily. In our area, half of this is under Virgincare - long appointment waits, poor communication, being discharged from services we need, equipment and services no longer provided....what services we still get from the NHS are struggling and we have been in some terrifying and frustrating situations in A+E and other services.
It is, in all honesty, a shit show and I am tired and weary of what feels like a constant battle to deal with the simple act of taking my child to school and feeling like he is safe and well supported (I have 2 children in another school with no additional needs and it is like living with a foot on 2 different planets)...and the less simple act of making sure he has joined up healthcare that keeps him well.
I want to know how children like mine, and the families who fight on their behalf, will be helped if Labour get into power with you at the helm, Jess? I ask from a position of relative strength - I have family support, a husband who cares, I can understand the system, write letters, speak up in endless bloody meetings...but I work with families who often do not have these things.
We need more specialist provision across the board.
We need a support system that works in partnership with families
We need a joined up properly funded NHS, with an end to contracting out children's services and social care.
We need someone who will listen to us. Will you listen to us? Please.