The System Isn’t Broken. It’s Collapsing.
The survey, which spoke to more than 600 families of children with Special Educational Needs and Disabilities, found that 72% of parents are spending three hours or more every single week on paperwork, appointments, and chasing services. Forty per cent are spending six hours or more. And nearly a quarter—22%—are spending more than eleven hours a week. That’s nearly a day and a half. Every week. Just to access what their children are legally entitled to.
Let that sink in.
We are not talking about optional extras. We are talking about families propping up a system that is supposed to be propping them up. As Georgina Durrant, Twinkl’s National Inclusion Lead, puts it: families are keeping the SEND system going when it should be keeping them going.
And the cost is not just time.
Three-quarters of parents said their child’s needs have affected their ability to work. Among those, nearly half estimate the financial hit to their household at more than £10,000 a year. That’s through reduced hours, turning down promotions, unpaid leave, or leaving work altogether. Add to that the direct costs: 35% of families are spending over £1,000 a month on private therapies, assessments, transport, and equipment. Eighteen per cent are spending more than £2,000. This isn’t choice. This is desperation.
I meet parent who haven’t had a night’s uninterrupted sleep in a decade. Parents whose mental health is quietly unravelling while they fight for speech therapy that should have been in place before their child started school. The survey confirms this: 88.5% of parents report feeling stress or anxiety related to navigating SEND support on a daily or weekly basis. Eighty per cent say advocating for their child has negatively affected their mental health.
And yet, 95.5% of respondents said support services were too difficult to access or simply unavailable. Not difficult to access and occasionally available. Too difficult, or entirely unavailable.
That is not a system under strain. That is a system in collapse.
Into this landscape, the government has announced what it describes as a £1 billion uplift for SEND and alternative provision. It sounds like a lot. But here is the thing they don’t put in the press releases: that £1 billion is not new money. It is included within the £3.3 billion core schools budget increase for 2025–26. It is not an addition. It is a reallocation.
And it falls spectacularly, almost insultingly, short.
The Green Party identified an £8 billion investment need for schools in their 2024 manifesto—a figure that included £2 billion specifically for teacher pay, but recognised that the scale of the crisis in SEND alone requires far more than we are currently offering.
That £8 billion was not a wish list. It was a costed assessment of what it would actually take to make this system function.
Instead, we have £1 billion, buried inside another budget, presented as though it is a gift.
Let me be clear. No one expects the government to fix decades of underfunding overnight. But when you promise reform and deliver a fraction of what independent analysis says is needed, you are not reforming. You are managing decline. And you are doing so on the backs of families who are already exhausted, stretched, and spending money they don’t have to fill gaps that should never have existed.
The Schools White Paper is imminent. So are the government’s SEND reforms. And I know what parents are afraid of, because Sense published a survey this week showing exactly that: nearly half of all parents of disabled children fear the support they have fought for will be taken away. Not improved. Taken away.
We don’t need the goalposts moved. We don’t need the eligibility criteria tightened. We don’t need another consultation on how to make paperwork more efficient while the people processing it are burned out and the people filling it in are weeping at their kitchen tables.
We need the system to do what it says on the tin. We need local authorities and NHS departments to be required—not encouraged, not incentivised, required—to work together. Because right now, the fragmentation is not an accident. Siloed budgets, conflicting eligibility criteria, and information that never quite makes it from one department to another all serve the same purpose: delay. And delay means families give up, or pay privately, or both.
We need the £8 billion. Not as a negotiating position. As a starting point, and we need policymakers to understand that the parents filling out these forms, spending these hours, and losing this income are not a workaround. We are not a stopgap. We are not a sustainable part of the infrastructure. We are human beings, and many of us are running on empty.
I will keep fighting for my child, and yours, as will you, that’s not in doubt. But we cannot keep holding up a system that was built to hold us up. The least the government can do—the absolute, non-negotiable least—is to fund it properly. Not with £1 billion wrapped in ribbon and presented as generosity. With the £8 billion that reality demands.
Families Are Holding It Up With Their Bare Hands.
I remember the first time I sat down to apply for an Education, Health and Care Plan. I made a cup of coffee, cleared the kitchen table, and told myself it would take an afternoon. How wrong was I?
Three months, four resubmissions, and a tribunal later, we finally had the piece of paper that said, in so many words: yes, your child is entitled to support.
That was ten years ago. And according to a new survey from Twinkl, things have only got harder.
I remember the first time I sat down to apply for an Education, Health and Care Plan. I made a cup of coffee, cleared the kitchen table, and told myself it would take an afternoon. How wrong was I?
Three months, four resubmissions, and a tribunal later, we finally had the piece of paper that said, in so many words: yes, your child is entitled to support.
That was ten years ago. And according to a new survey from Twinkl, things have only got harder.
The survey, which spoke to more than 600 families of children with Special Educational Needs and Disabilities, found that 72% of parents are spending three hours or more every single week on paperwork, appointments, and chasing services. Forty per cent are spending six hours or more. And nearly a quarter—22%—are spending more than eleven hours a week. That’s nearly a day and a half. Every week. Just to access what their children are legally entitled to.
Let that sink in.
We are not talking about optional extras. We are talking about families propping up a system that is supposed to be propping them up. As Georgina Durrant, Twinkl’s National Inclusion Lead, puts it: families are keeping the SEND system going when it should be keeping them going.
And the cost is not just time.
Three-quarters of parents said their child’s needs have affected their ability to work. Among those, nearly half estimate the financial hit to their household at more than £10,000 a year. That’s through reduced hours, turning down promotions, unpaid leave, or leaving work altogether. Add to that the direct costs: 35% of families are spending over £1,000 a month on private therapies, assessments, transport, and equipment. Eighteen per cent are spending more than £2,000. This isn’t choice. This is desperation.
I meet parent who haven’t had a night’s uninterrupted sleep in a decade. Parents whose mental health is quietly unravelling while they fight for speech therapy that should have been in place before their child started school. The survey confirms this: 88.5% of parents report feeling stress or anxiety related to navigating SEND support on a daily or weekly basis. Eighty per cent say advocating for their child has negatively affected their mental health.
And yet, 95.5% of respondents said support services were too difficult to access or simply unavailable. Not difficult to access and occasionally available. Too difficult, or entirely unavailable.
That is not a system under strain. That is a system in collapse.
Into this landscape, the government has announced what it describes as a £1 billion uplift for SEND and alternative provision. It sounds like a lot. But here is the thing they don’t put in the press releases: that £1 billion is not new money. It is included within the £3.3 billion core schools budget increase for 2025–26. It is not an addition. It is a reallocation.
And it falls spectacularly, almost insultingly, short.
The Green Party identified an £8 billion investment need for schools in their 2024 manifesto—a figure that included £2 billion specifically for teacher pay, but recognised that the scale of the crisis in SEND alone requires far more than we are currently offering.
That £8 billion was not a wish list. It was a costed assessment of what it would actually take to make this system function.
Instead, we have £1 billion, buried inside another budget, presented as though it is a gift.
Let me be clear. No one expects the government to fix decades of underfunding overnight. But when you promise reform and deliver a fraction of what independent analysis says is needed, you are not reforming. You are managing decline. And you are doing so on the backs of families who are already exhausted, stretched, and spending money they don’t have to fill gaps that should never have existed.
The Schools White Paper is imminent. So are the government’s SEND reforms. And I know what parents are afraid of, because Sense published a survey this week showing exactly that: nearly half of all parents of disabled children fear the support they have fought for will be taken away. Not improved. Taken away.
We don’t need the goalposts moved. We don’t need the eligibility criteria tightened. We don’t need another consultation on how to make paperwork more efficient while the people processing it are burned out and the people filling it in are weeping at their kitchen tables.
We need the system to do what it says on the tin. We need local authorities and NHS departments to be required—not encouraged, not incentivised, required—to work together. Because right now, the fragmentation is not an accident. Siloed budgets, conflicting eligibility criteria, and information that never quite makes it from one department to another all serve the same purpose: delay. And delay means families give up, or pay privately, or both.
We need the £8 billion. Not as a negotiating position. As a starting point, and we need policymakers to understand that the parents filling out these forms, spending these hours, and losing this income are not a workaround. We are not a stopgap. We are not a sustainable part of the infrastructure. We are human beings, and many of us are running on empty.
I will keep fighting for my child, and yours, as will you, that’s not in doubt. But we cannot keep holding up a system that was built to hold us up. The least the government can do—the absolute, non-negotiable least—is to fund it properly. Not with £1 billion wrapped in ribbon and presented as generosity. With the £8 billion that reality demands.
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