Exclusive
Exclusive poll reveals how children with Special Educational Needs are being failed
Parents of children with Special Educational Needs and Disabilities (SEND) have told ITV News Central they have been left at breaking point by a system that was originally designed to help them.
Our survey of 500 parents of children with SEND across the Midlands shows the huge financial and mental strain experienced by families as they try to access vital support.
The exclusive poll for ITV News Central conducted by Opinium found:
3 in 5 had experienced challenges getting educational and health support.
Almost half (49%) of respondents said they had given up work or reduced their hours to negotiate the system.
1 in 3 said they had used the legal system to fight Local Education Authority (LEA) decisions - spending on average £7000.
Parents with more than one child with SEND spent an average of more than £8000.
23% have paid for private teaching spending an average of £53833.70.
20% spent an average of £5376.70 on educational psychologists.
18% paid for speech and language therapy with an average spend of £4093.80.
Due to the Cost of Living Crisis, 7 in 10 said their current financial situation meant they had cut back spending on supporting their child with SEND, with 29% doing so significantly.
Behind the data are families like Becky from Dudley and her 14-year-old daughter Leah who has barely attended school for two years.
Leah dreams of becoming a surgeon and wants nothing more than to learn.
When she started to struggle at school, Becky suspected autism but says no one would believe her.
Autism was confirmed in a healthcare assessment that she paid for, and she has spent the last two years fighting for support.
"It's like a battle. You have to fight for everything. They just don't listen to us.
"I'm her parent and I know her better than anybody else. It's mentally draining. You send emails and you don't get replies.
"You just don't know what's happening and my daughter has still got no education in place."
Samantha Butterwick from Rutland is in a similar situation with her son Joshua who is also autistic.
"The only way I could get him into school was for me to be with him because the times I was trying to get him in, I would take him into the entrance and he would just go into a shutdown state, which was really traumatic actually for a parent to witness."
Samantha says things started to go wrong when she applied for an Education, Health and Care Plan (EHCP), a legal document which sets out a child's needs and what must be done to support them whether they stay at a mainstream school or move to specialist provision.
"It becomes a real battle. No one prepares you for that. There's a lot of parental blame. You start questioning your mental health and ask yourself 'Am I doing the right thing?' It's really hard."
In our poll, 41 % of parents said they had consulted a medical professional about their child's mental health which they felt was linked to inappropriate SEND provision.
43 % of parents said they'd needed to get help themselves.
Just under half of families told us in the survey that when they get support, it is good, with 35% rating it as good and 11% very good.
18% rate the provision as poor and 29% say it is adequate.
But it appears to be accessing the support which is the problem. Leah says she knows she would thrive in the right setting, but due to her autism she needs a school with smaller class sizes where they understand her condition.
The government announced a big package of SEND reforms in March. Parents welcome more investment, but the Local Government Association say they still need more to cope with demand.
Samantha Hale from HCB Solicitors says although some of the proposals are good, the issue of LEA accountability is still not addressed.
"The local authorities are making unlawful decisions, their practices are quite often unlawful.
"We're seeing these failures happening at local authority level that is then pushing the parents to appeal because they have no choice to.
"Unfortunately there are a lot of parents who don't have the time, the knowledge or even just the strength to be able to push the Local Authority so it does feel like local authorities say no and hope they don't push back."
For Rachael Wilkinson from Nottingham, it took nine years to get the support her son Jack needed. He is autistic and she started fighting for him aged five.
Now 15, and after numerous appeals, he is finally happy and thriving in a specialist speech and languge school, Dawn House in Rainworth near Mansfield.
But she says the nine years have taken their toll on them both.
"Do you know what, it was so draining.
"And the primary school was so unsupportive to the point where for Jack's last year of school, I did actually remove him and home educate him because he was self-harming in school, and the local authority was saying there is no special educational need.
"There obviously was and we would just go around in circles.
"I was saying there was, they were saying there wasn't. And there was a person that was in the centre, the one that was struggling."
The Children and Families Minister Claire Coutinho MP said:
"We've announced a series of reforms for the things that are causing these delays. We're bringing on more educational psychologists which will help with diagnosis, we're building more specialist schools and we're reforming mainstream education so teachers are better equipped. Because it is a complicated system, but we need to make sure we get it right.
"One of the things we're doing is building more specialist school places...But I think another important thing is that each area is going to have to do a local inclusion plan to really assess what needs they have and all their different children and young people so we can check that they're meeting them."
Ruth Buttery Cabinet Member for Children and Young People at Dudley Metropolitan Borough Council, where Leah is based, said:
"Our aim is to give all children and young people the opportunity to fulfil their unique potential.
".... for some children a more specialist school is appropriate. In Leah's case, we had previously identified a mainstream school, but we are aware Leah has not been attending school.
"We have recently agreed to prepare and issue an EHCP. This crucially will enable Leah to get back in the classroom where we know she wants to be.
"We will of course be maintaining contact with Leah's parent as we move through this process."
Commenting on Jack's case, Nottingham City Council said: "We're committed to an inclusive education system for all pupils and last week the council formally approved a £2m investment to increase available spaces for pupils with SEND at two mainstream primary schools, and additional capacity to support pupils with autism at a city special school.
"Meanwhile, we are currently consulting with partners and the public about a further £16m to be spent on creating additional SEND provision in Nottingham"
Rutland County Council said,
'We cannot comment on individual cases, however we currently have over 300 Education and Health Care Plans in place in Rutland. In order to deliver these plans we have to adhere to the national SEND Code of Practice and the strict timescales involved. Rutland performs amongst the best in the region in delivering these plans and performs well against all of our timescales."
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