It is absolutely exhausting @inkymoose. I am genuinely shocked at just how appalling it all is. My oldest child was diagnosed with autism in Reception and my younger one while still at nursery, and now also has an ADHD diagnosis. Both have had school, CAMHS, the NHS SALT service refuse the support that their doctors and specialists state that they need so I’ve had to pay for everything privately. Both are now suffering serious mental health problems because over three years after their diagnosis they’re still not being helped. I applied for the EHCPs myself and the Local Authority refused to assess either of them despite multiple reports from their specialists stating they each require an EHCP. My daughter became so distressed she couldn’t attend school and the school wouldn’t even discuss it with me for over a term, to make a plan enabling her to go back.
I took the LA to tribunal and they were forced to do the assessments for both of them and have now granted an EHCP for one and not the other, despite their reports saying pretty much identical things. There are detailed assessments from neurodevelopmental paediatricians, SALT, OT, an educational psychologist, their child psychologist who does play therapy with them, all stating that they require EHCPs. The Local Authority refuse to discuss of explain their decision which is a statutory requirement. They haven’t followed the statutory process and have ignored all of the reports submitted. The person who is allegedly my children’s “SEND Officer” and managing their cases has never even spoken to me. I’ve left voicemails, emailed, no response. They won’t speak to my children’s advocate, either. So this person is making these decision about my children, and meant to be acting in their best interests, but has never met them and never even spoken to their parent, in breach of the SEND regulations and the Children and Families Act.
I’ve lodged another tribunal case to get the refusal to issue overturned but it will take months of maybe over a year meanwhile his mental health is collapsing. And mainstream secondary school will not be appropriate for him so we need the EHCP in place for the start of YR5 in just over a year as that is when we need to start looking for an appropriate secondary setting. Not content with having trashed his entire time at primary school, they seem to be trying to make it impossible to even get an EHCP in place in time for secondary school, when he was diagnosed in Reception. It’s unbelievable.
And for the child for which they have stated they will issue an EHCP, the draft they sent (which I only received by proxy as it was emailed to the children’s advocate) was so bad that I had to redraft the whole thing myself. I did so with direct quotes from the specialists’ reports, with footnotes stating which report and the page number that each quote had come from so it cannot conceivably be considered contentious at all as it is all referenced. Nearly two months later, having had no response from chasing up, they sent another draft where they’d deleted pretty much everything I’d added so the provision set out in their draft is completely insufficient and actually withdraws some of the support that was finally put in place informally last year after her prolonged absence so that she could manage to go back to school. Again, they’ve refused to provide any explanation for deleting all of the provision that her educational psychologist, SALT etc have specified in their reports. They refuse to have a meeting about it, and if they publish it as it is then she’ll be unable to attend school again until I take them back to tribunal again to get their decision overturned, which could take many months or even a year. She is only just starting to recover from the immense damage being forced out of school for a term did to her last year so this will absolutely push her over the edge.
I understand that resources are scarce but the sheer callousness of these people, to behave like this knowing the harm they are doing to small children, and the gaslighting of the parents, is just so far beyond unacceptable that I find it disgusting that they can ignore the law and regulations like this and get away with it with no personal consequences. And being able to do so with impunity means they continue, doing this to family after family.
They’ve trashed my physical health and pushed me completely to the point of mental burnout, trashed my children’s mental health to the point where they both beg not to be sent to school: two kids with IQs well into the top 1%. It’s also cost me a large 5 figure sum of money for all of the assessments and treatment that the NHS/ Local Authority has refused to provide. The stress of it all on top of a full time job and raising two disabled children as a lone parent has done so much damage to my health and my children’s childhood as it’s taken up so much of my time, as well, that I should be spending with them as family time.
It’s an absolute disgrace and I still find it hard to believe that this goes on. I don’t think it will change until OFSTED is replaced by a proper regulator which slams local authorities that break the law with such enormous fines for every instance of such behaviour that the financial incentive to do this is removed. The worst part is that at least my children have me to fight for them. Many parents won’t or won’t know how and their children will get absolutely no help whatsoever.
Our Local Authority has severe budget issues so is part of the “Government Safety Valve” scheme whereby the Government allowed them to keep some SEND costs off balance sheet on the condition that they “reduce SEND spending”. Their approach to this - rather than setting up a wider variety of schools so that appropriate school places are available for children with various needs and therefore they don’t require such significant support because they’re being forced to function in an inappropriate environment that doesn’t meet their needs - is to do this by ignoring the law and trying to illegally refuse EHCPs, so you’re right, the Government is also culpable and involved in this scheme to encourage this deliberate law breaking. The fact that parents win 99% of the tribunal cases country wide shows this is a system issue but the Government turns a blind eye and even eggs on this blatant law breaking by Local Authorities. It’s absolutely shameful.
Ed Davies seems to be the only UK politician who gives a damn about these issues, having had a disabled son himself. Labour and the Conservatives are a complete disgrace and don’t care about this deliberate harm to children that is being caused as a matter of policy. Obviously the Reform psychopaths would be even worse.
I just despair really, but I’m so angry now that as well as getting the illegal decisions overturned I am prepared to put myself through yet more stress to get proper justice with consequences and if that means raising a separate court case against the Local Authority and specific staff involved, so be it. I did a subject access request and have written documents with proof of deliberate illegal behaviour and collusion to circumvent the law. I want these people sacked and publicly shamed, and damages for the harm they’ve caused, and to set a legal precedent to make them think twice about behaving like this in future.
I spoke to the National Autistic Society and Equality Advisory Service last year and may contact them again for advice. They stated at the time I had a clear case of Disability Discrimination should I choose to raise one. I’m just not sure how much more stress I can take, but also can’t bear to see these people get away with this and carry on with their lives like nothing happened given the immense long-term harm they’ve caused to my family. I wonder whether there’s any prospect of the NAS and EAS working together to help with some kind of class action lawsuit joining together with other families who have been subjected to similar disgusting and illegal discrimination.