Campaigner calls on next PM to listen to parents of disabled children – and hold councils to account on SEND education

Marie Martin made the comments in relation to a Government review which proposes council tax-style banding for disabilities, and appears to suggest that a new set of national SEND standards is needed.

Marie, aged 55, of South Normanton, has faced an ‘absolute fight’ with Derbyshire Council to get her autistic son Zak the education and support he deserves.

After securing personal education budgets allowing him to be home-schooled, she is now having to fork out hundreds of pounds for the 19-year-old’s work experience – despite the authority’s education and health care plan committing to funding it.

The SEND Green Paper will replace previous reforms from 2014.

However, Marie says full reform is not needed, rather action to address the entrenched problem of non-compliance with the existing law.

She said: “The legislation is all there in the Children and Families Act 2014. Why do we need SEND reform and a Green Paper? There’s no accountability at the minute – nobody holds the local authorities to account and that’s countrywide.

“The fact Derbyshire Council loses 96 per cent of tribunals tells all, because actually they’re not doing what they should be doing by law. That’s double, because we don’t want them to dilute what is already there.

“They gave us EHCP, but nobody is holding the local authorities responsible for standing up to that. You can have a watertight EHCP, which is a massive legal document, but the local authority can still ignore you.

“Zak’s EHCP is about 40 pages long. It clearly states the council is to provide work experience, support that transitions into adulthood, speech and language therapy, occupational therapy – it’s all in black and white.

“I know I can’t lose by taking them to court, but it’s the fight and the battle. Parents have enough dealing with their child’s mental health and keeping them level without taking their emphasis off that. It’s exhausting.

“If Zak would have been at school, school would have had to follow that EHCP, but the problem is that the local authority don’t really take an interest, they don’t go into schools – they were hardly there at any of our annual reviews when we were at school.

“I’ve experienced staff who don’t understand what goes into an EHCP and where. It’s a lack of education from the Government right down.”

Marie, who goes by SEND Warrior mum on Twitter, is also joined with other parents in a campaign to demand the Government let them have their say on the proposed bill.

She said: “We’re basically saying they need a parent panel, to listen to our views as parents of disabled children who understand the system and know its difficulties and young disabled people who are eloquent enough to put young people’s point across.

"It’s kind of what I’m trying to do is provide a real voice that’s not leglislated against.”

Zak became a voice for disabled young people in June when he asked hard-hitting questions during a meeting with schools standards minister Will Quince.

The teenager, who revealed he felt suicidal because he ‘couldn’t face another day in the system’, said: "You state in your legislation ‘every child matters’ and yet I’ve been made to feel like an inconvenience and a burden on society.

“I’ve watched my mum spend her life fighting the authorities for my future.

“Do you think that it’s acceptable for our local authorities to be allowed to do this to us and other families like us?

“What will you do to make sure they don’t drive young people like me to not be able to face another day in the system?

"Four years ago, I came very close to this and I know other people who didn’t speak about it and the consequences are tragic."

Speaking directly to the minister, he said: “You'd fight much harder than this for change if one of your children had the disability I had."

Marie asked how Mr Quince will make local authorities accountable, to which he replied: “We’ll publish speech and language waiting times. If parents can see how long children are waiting, they can say ‘that’s not acceptable’.

“At the moment, if a school doesn’t want to admit a child, only the Education Secretary has the power to enforce. I’m considering whether that should be at the local authority level.”

He also acknowledged families had been ‘let down’.

Mr Quince said: “Every single child who isn’t getting the education they deserve, every parent who has been let down by the system, that pains me.”

Thankfully Zak has seen his mental-health boosted thanks to his work experience placements with leading highways company Costain, as well as National Highways, Saferoad, and Extrudakerb.

He and his campaigning mum continue to raise disability awareness in the workplace with The Disabled Childrens Partnership.

The pair recently took part in an episode of All4Inclusion podcast on YouTube where they spoke of their own experiences and how they’re working to make a difference.

For more information on the SEND green paper visit the Government website or to follow Marie on Twitter search ‘SEND Warrior Mum making a difference!’