19/10/2017 11:43 BST | Updated 19/10/2017 12:38 BST

New Ofsted Report Slamming SEND Provision Is No Surprise To Parents Of Those With FASD

It's fairly rare when a government report uses stronger words than I might in condemning the lack of attention to students with special needs. This must-read report is damning of the system. It's also frustrating beyond words to read it as a parent of a child with SEND and as someone engaged in efforts to support other families.

A new Ofsted report on how children with Special Educational Needs and Disabilities (SEND) are being treated in our schools validates every parent of a child with a Foetal Alcohol Spectrum Disorder (FASD) who has struggled, cajoled, begged, and demanded to get their children proper support in school. For the larger-than-you-might-think subsection of those children with SEND who have FASD this report underscores the unacceptable hurdles we face in trying to do right by our children.

It's fairly rare when a government report uses stronger words than I might in condemning the lack of attention to students with special needs. This must-read report is damning of the system. It's also frustrating beyond words to read it as a parent of a child with SEND and as someone engaged in efforts to support other families. We already knew the system isn't working in any sort of consistent manner. We already knew that there is no joined-up thinking about how to help our kids. We cry ourselves to sleep because of the pressures we see this placing on our children and young people, too many of whom are at breaking point. But to see it in black and white is bewildering. As parent advocates, we need to know: now you have the 'proof' what are you going to do about it?

This report should be placed front and centre on the desk of every MP and every leader in every Local Authority. It talks about illegal exclusions and the failure of elected leaders to hold the local areas responsible for implementing government policy. It outlines the lack of a coordinated approach to meet the educational, health and social needs of children and young people with SEND. It talks about the long waiting times and lack of access to needed therapies, the confusion over funding, and the failure to put in place coordinated support. It highlights the way we fail our young people with special needs and disabilities as they leave school. It is a comprehensive slap down of those politicians who put in place great new policies (such as extending Education and Health Care Plans to 25) without providing resources, support and proper evaluations to ensure those reforms are being followed through. In other words, it shows that while England has some theoretically good policies in place, at the moment this is just 'talking the talk' without 'walking the walk'. Our precious children and young adults who are least able to fight back against this system are the ones being hammered by this hypocrisy. The system itself today has hoisted the red flag admitting its failures. This is true for all those with SEND and learning disabilities.

Here's where those with FASD and their parents, carers and guardians feel invalidated. The report states that "In many local areas, ante- and neo-natal checks were increasingly effective at picking up children who had the most complex special educational needs and/or disabilities." This is not happening fast enough when it comes to identifying those affected by the brain-based issues related to prenatal alcohol exposure. Due to society's ignorance, stigma or maybe even fear of opening a 'can of worms' the Powers That Be still fail to address this issue in a coherent way. The report refers to the detrimental impact of poor diagnostic pathways for those with autism. It talks about the waiting times, the delays, the frustrations. And yet with only a few notable exceptions across England, when it comes to FASD diagnosis, assessment and support the services are extremely limited or not available at all. Experts say that the brain damage of FASD is believed to be more prevalent than autism, and yet there is a big nothing in some areas such as East Hertfordshire, where there is no commissioning of diagnostic services for FASD with the excuse that they are following NICE guidelines - which is really just saying they are doing nothing, as there are no NICE guidelines on this. GPs from across the country tell us they have not received clear guidance on this from local clinical commissioning groups. The CCGs have been tasked by government with meeting these needs. It is a big, bewildering wasteland that allows those with FASD to fall through the cracks and leaves parents seeking help for their children at wit's end.

Let's have a think about what the government today has said about exclusions. Why do you think there are so many exclusions? It's because behaviours at school increase when there is no support in place to help students with SEND with their sensory and cognitive needs. I would be willing to bet that were a study conducted about this, those with diagnosed and undiagnosed FASD would be among the highest proportion of students being excluded and lost in this system. If anyone wants to help fund that study we can point you toward too many families who would be willing to participate. We hear their stories every day, and it is heartbreaking. Kids with FASD try so hard to fit in at school, and yet due to their brain wiring they can't do what is being asked. Even if they are able to hold it together at school, they will likely meltdown at home. When parents or carers raise this with the schools, they are told everything is 'fine' at school and that the scenes at home must be their faulty parenting. Wrong answer. Watch this space because as little Johnny or Jenny grows up, they will have an increasingly difficult time accessing more complex and abstract education and all hell is likely to break loose when they hit secondary school. If we know that as parent advocates, surely the senior educators and decision-makers know that too. There are known strategies that help, let's get on with creating brighter futures.

The Prime Minister rightly wants to focus on child mental health. The young royals have rallied to this important cause. We can point you toward many, many young people with FASD have been torn down in educational settings, denied the support they need and deserve. There are too many lost and discouraged young people with FASD who have ended up trying to commit suicide, addicted, parenting children at too young an age, homeless, sexually abused, or ending up in prison. If you truly want to focus on improving outcomes for mental health, take a few steps back and put in place proper diagnostic and support pathways for those with FASD - including, importantly, proper supports and assessments to help them access the education they have a right to by law just like any other child.

Buried within it is a glimmer of hope for parent warriors who all too often feel they are banging their heads on brick walls. Even though it is not easy, speaking out matters. "Parental dissatisfaction was often a significant factor when inspectors judged that a local area should submit a written statement of action." If you feel like the schools are letting down your child, work in cooperation with local educators when you can-start with the teachers, the TAs, the SENCOs. When you can't, raise your voice, join with likeminded families and support groups. Write to school governors, your MPs, your papers. Get on the airwaves. Make it known that we are not letting our kids slip under the wheels of this educational disaster train.

They will tell you there is no money. Tough. It's their job to find it. If they don't spend it on education, diagnosis and support, they will spend it later on prisons, social services, and mental health services. A country that can field a multi-billion pound and unusable nuclear deterrent can surely find some crumbs for teacher training, in-class supports, and assessments that can change the trajectory of the lives of some of our most vulnerable students.

In this report the government itself admits what the FASD community has been saying all along, "families experienced a 'postcode lottery' for the quality of support and provision they receive." This is, quite frankly, unacceptable. Today for once it's not just those with FASD, their families and carers saying it. It's 'official.' But if that is where this stops, then a fat lot of good that will do any of us. Let's change this. Where and when do you want us to show up? Families supporting those with FASD will be the first in line, sleeves rolled up, ready to help.