My child was awarded disability benefits after five years of fighting. Why don’t I feel victorious?

By the time my second child was born, I felt pretty confident about how to navigate parenting a disabled kid. Disability runs through our family, so I knew exactly what to do to get the support we need – or so I thought. After all, I’ve been through the processes a million times before, what could go wrong?

It was a complete shock to me then when the Department for Work and Pensions (DWP) immediately rejected the child disability living allowance (DLA) claim I made on my kid’s behalf.

That turned out to be just the beginning of our journey – it took a total of five years, three applications and three appeals processes (for which I spent countless hours gathering medical reports, appointment letters, prescriptions and personal statements, made dozens of phone calls, and finally, earlier this week, attended a tribunal in court), in order to finally successfully convince the DWP to award the financial aid my child has always needed.

• DWP under investigation over treatment of ill and disabled people after deaths of benefit claimants
• Almost no recorded cases of disability benefit fraud despite DWP crackdown: ‘PIP fraud is a non-issue’

“We’ve reversed our decision,” the DWP rep told me coolly from behind her laptop in court. I could’ve cried –finally. It was a long overdue win for us, which means we can now afford things my kid has never had access to previously. But it’s still five years too late – and for many disabled people, not getting the financial aid they need can push them into poverty, or worse.

Disabled people in the UK face extra living costs of up to a whopping £970 per month, according to research by disability charity Scope. That’s not for luxury goods – it’s what’s needed simply for us to achieve the same standard of living as non-disabled people.

Disability benefits, whether DLA for children or personal independence payment (PIP) for adults, are supposed to bridge that gap (though the maximum monthly PIP payout is just shy of £800, so still not quite covering it). But disability benefits awards are so tightly ring-fenced that claimants can go years, if not a lifetime, unable to access this essential money.

The amount of advocacy, paperwork, sharing of medical history and incredibly private information required to prove to authorities that a disabled person requires financial support to exist in our inaccessible society is surely enough to make many people give up. The tangled, energy-sapping and dehumanising web of a process “sets us up to fail“.

Some claimants find the disability benefits system so painstaking and degrading that they’re driven to suicide, or attempted suicide. A Channel 4 Dispatches programme broadcast at the end of 2021 revealed that of a survey of 3,500 disabled claimants, 451 of them had attempted suicide as a result of their interactions with the DWP.

The DWP has spent more than £350m in staff costs on disability benefit appeals in the last decade. Like ours, many of them are overturned at tribunal. You’d think that the lengths the government go to are so drastic because there are a lot of fraudulent claims. However, recent statistics released by the DWP themselves admit that there are almost no recorded cases of disability fraud.

Will we ever see true justice for our community? Maybe the forthcoming election will shake things up? It’s unlikely to – we’re rarely mentioned in election manifestos, other than when the Tories are promising to “crack down” on us, as if we’re a herd of animals running wild.

But there is a glimmer of hope on the horizon. The EHRC, Britain’s human rights watchdog, announced this week that it is investigating the DWP’s treatment of disabled people, including benefits decisions linked to the deaths of vulnerable claimants.

For the disabled people that don’t yet have the help they need, this might eventually help turn things around. But just like our long overdue win, “winning” after being forced to go through such a painstaking process doesn’t really feel much like a victory at all. And for some disabled people, it’s tragically too little, too late.

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