I’ve fought for better support for disabled children for 15 years… the cries of anguished parents have never been louder
IT was a tragedy that compelled me to start writing about my disabled daughter, Elvi, 15 years ago.
A mother and father, distraught at their tetraplegic son’s death from a virus aged five, had jumped from well-known suicide spot Beachy Head together.
Their boy’s lifeless body was in a rucksack strapped to the dad and the mum was clutching his favourite toys.
In the inquest reports it sounded like they had very few people who understood the stress of their lives.
I was so upset by what must have been their extreme loneliness and pain that I felt I had to write about what life was like with Elvi, then eight.
I rarely saw stories about families like ours and felt a duty to bring our life into the open so that other parents didn’t feel so isolated.
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I never dreamed 15 years later how much worse the lack of support for Elvi, who has a rare genetic disorder, would become and how loud the cry would be from anguished parents at the inability of the system to assist the most vulnerable of children.
This week two reports flagged how critical investing in the health, education and care systems for disabled and neurodivergent children has become.
A Children’s Commissioner Report revealed an estimated 400,000 children in England are seeking support for conditions like autism, ADHD, and cerebral palsy.
Dame Rachel De Souza said: “In 2024, we would never imagine that children in this country are being told they cannot access education because there is no suitable school for them.
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“We would not expect that some children are non-verbal and wearing nappies well into the primary school years, because they haven’t been able to get the help they needed sooner.
“It is unthinkable for parents to be told the only option for them is to sedate their distressed three-year-old autistic child in hospital. In 2024, situations like these are happening every day in England.”
A House Of Lords inquiry into the job opportunities for young disabled people found that they “face continuous barriers to securing long-term employment.
This starts from the moment a young disabled person enters nursery school and continues through their preparation for work and their transition from education to employment.”
I feel that over the 15 years I’ve been campaigning for disabled children and their families things have become far worse.
In that time I’ve waded through oceans of paperwork for Elvi, spent hours in the “corridors- of-doom’ outside hospital consultants’ offices, gone into endless bitter battles with council officials and social care teams whose job appears to be to refuse help or equipment or the right school placement, given up my job and cried so bucketfuls of tears of frustration and anger.
Elvi is incredible but the bureaucracy surrounding her and most disabled or neurodivergent children makes me and her dad feel like we’re pushing a rock up a mountain. every day, with the weight of the State pushing it back against us.
In Elvi’s lifetime we’ve had the Children and Families Act 2014 which introduced Education Health and Care Plans (EHCPs), legal documents detailing what support each child needed to meet agreed targets and who was responsible for funding those. That law also extended rights of children up to the age of 25 to ensure they had access to further education.
But austerity meant the money wasn’t there to fund children’s needs.
We had a 2022 SEND Review in which the then Secretary of States for Education, Nadhim Zahawi, and Health and Social Care, Sajid Javid, admitted the system wasn’t working.
A much-delayed SEND Plan was published in 2023 but with very few of its suggestions actioned since then.
As a result of better understanding of neurodivergent conditions, like autism and ADHD, and doctors being able to keep complex needs children alive for longer, we’ve had an increase in the numbers of children with SEND but no resources to meet their needs.
The Sun’s Give It Back Campaign has fought hard for those resources.
MPs told the that SEND is in the top three issues constituents come to them for help with and the most complex problems to resolve. In the last two weeks the subject has come up four times in Keir Starmer’s Prime Minister’s Questions.
While politicians stroke their chins, families sick of institutional gaslighting have become more and more desperate.
In September a mother and her disabled daughter died in their home in Salford in what police suspect was a murder/suicide. Investigations are ongoing so we don’t yet know the details but so many parents have said to me: “I am not surprised.”
That’s not to suggest that they don’t value the lives of their children but that you can become so exhausted from caring and fighting authorities and so distrustful of the organisations that would be in charge of your child if anything happened to you, that you would understand taking this action.
That’s how little trust there is now in the system. Rebuilding that trust should be first on the Government’s to-do list.
The second should be working across different departments to ensure they are looking after all the areas that feed into a child’s life, from education to health and social to benefits and sport.
And third, understanding that there is a perfectly good law protecting children’s rights but it needs investment to work, investment that will save taxpayers’ money in family breakdowns, wasting children’s talents and causing more severe physical and mental harm to children in the long run.
Education Secretary Bridget Phillipson said this week that the Government is “serious” about reform but there’s “not a silver bullet here”.
She said: “I would just urge for a bit of patience as we try and work through what that reform plan will look like.”
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As Elvi leaves the SEND system for the equally-tough battles of adult social care, I’ve run out of patience.
I can only hope the government is speaking to parents and disabled young people themselves in order to get this right for the next generation of disabled children. There is so much at stake.