Seeing the news today that the government was looking to move under-25s off the main sickness and disability benefits was upsetting.

Alan Milburn, a former Labour health secretary, is publishing a report to help reduce the number of 16 to 24 year-olds in the UK who are not in education, employment or training – known as ‘NEET’.

But the shocking part is that his report is expected to say that under-25s should no longer be able to claim benefits such as personal independence payment (PIP).

Under the plans, disabled young people will receive the same basic rate as Universal Credit claimants, with a vague mention of an ‘additional cost allowance’. 

I couldn’t believe what I was seeing.

As someone who has relied on these benefits, from a young age, I’m outraged to see this.

PIP is vital help for young people, and removing it does not help them.

Milburn acknowledged that his plans would not be ‘pain-free’ – and he’s right that cutting benefits to disabled people is painful. 

I should know. 

My health started to deteriorate in my mid teens, slowly at first, then all at once. By the time I hit 20, in 2016 I was entirely reliant on my partner as a carer – to wash my hair and help me bathe, cook my meals, and escort me to medical appointments. 

Over the past 15 years, in my quest for answers to a wide array of puzzling and debilitating symptoms, I’ve racked up diagnoses of hypermobile-Ehlers Danlos Syndrome, Spina Bifida, Scoliosis, Endometriosis, C-PTSD, ADHD, and Autism.

I was not aware at that point that I was eligible for financial help, the stress of poverty exacerbated my mental and physical health, as well as placing a great deal of pressure on my partner, who was attempting to work full time on top of the care work he was providing for me, for free.

But by the time I turned 22 I applied for PIP – and it saved me.

I’m 30 now, work when my health allows, have a child, and have undergone nearly every medical intervention available to me both on and off the NHS over the past decade. 

Realising I was eligible for, and then claiming PIP, and later, UC, is the main reason I have been able to do all of these things. 

If I had been refused access to disability benefits as a young adult, I’m certain that my physical health would have only continued to worsen, and as a direct result, my battle with my mental health would have been lost entirely. 

A large part of me believes that I would not be sitting here now writing this article, or here at all, if I didn’t get the help I needed.

PIP, as well as the health element of Universal Credit, allows me the financial independence to cover unavoidable extra transport costs, energy costs, childcare costs, private prescription costs, physiotherapy costs, cleaning costs, and accessibility aids when I cannot go without. 

All of which provide not only me with extra capacity to work, but my partner too. Ours are the stories Milburn seems keen to ignore for the generation that is following. 

It’s getting harder and harder to access so many services we disabled people rely on, such as SEND provisions in schools, access to testing and diagnostic assessment on the NHS, long term physical treatments of any kind, Access to Work Scheme funding and therapies. 

Increasingly unsustainable costs in housing, food, bills and transport, and benefits that have fallen significantly below inflation – all which will harm young people who are seeking help.

As Milburn himself points out, 19% of young people on disability benefits are currently in work.

If they no longer have financial assistance that gives them the freedom to access support – which often plug gaps in the NHS, social care system and SEND system in schools – this number is almost guaranteed to drop further. 

If we want young disabled people to contribute to the economy, it is fiscally illogical to cut what little support they have, and will cost us far more in the long run than we stand to gain.

Don’t get me wrong, the current system of available support is woefully inadequate if the goal is for young disabled people to have equal opportunity with their non-disabled counterparts. It can be deeply traumatising, and has even been linked with preventable deaths over the years. 

But if it had been stripped back any further, I dread to think what would have happened to not just myself but many others who may find themselves in comparable situations through no fault of their own. 

Disability can happen to anyone, at any point in their lives. And while Milburn has attempted to reassure us that the ‘most severely disabled’ young people will receive an additional payment, this feels like an afterthought and many disabled people will still be plunged further into poverty and into dependence on the state because of any cuts made. 

However, no detail is yet available on who will qualify as ‘disabled enough’ for this additional payment, how much it will be, how this will be decided and if the people making that decision will be medically qualified to do so. 

Disability charity Scope estimates that the added cost of disability is expected to reach over £1,200 a month over the next few years – while PIP is capped at a maximum of £778.40 and the health element of Universal Credit is capped at £429.80. 

32% of disabled people live in poverty as a result, compared to 20% of non-disabled people, and those who evade poverty still face a lower standard of living than their non-disabled counterparts due to the added costs that disability creates.

Most young disabled people, in my experience, grapple with feeling like a burden to those they have to rely on, and deeply mourn what they perceive as a waste of what is often promised to be the most free and invigorating years of their lives. 

They truly do want to ‘get better’ where possible, want to work, want to find meaning, value and independence and want to contribute to society fiercely. 

But we cannot simply keep increasing the barriers they face and hope that a stick or two will scare them into magically finding a way out of need, out of poverty, by their bootstraps.

Do you have a story you’d like to share? Get in touch by emailing Ross.Mccafferty@metro.co.uk. 

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