Teenagers with incurable conditions are among hundreds a week being stripped of disability benefits after their 16th birthdays.

Nearly a third of those who received Disability Living Allowance (DLA) in childhood had claims for Personal Independence Payment (PIP) rejected when trying to move to the adult benefit, BBC analysis has found.

Disability charity Scope said a “complex, adversarial and difficult to navigate” system contributed to the rejections.

With widespread benefits reform proposals expected within weeks, Prime Minister Keir Starmer this week called the current system “unsustainable, indefensible and unfair”.

The conditions most likely to result in a refused claim were those that may be managed more successfully by an adult than a child, like diabetes or asthma, experts said.

But among those to have had claims rejected since PIP’s introduction in 2013 are thousands living with life-changing conditions including cancer, blindness, psychosis, deafness and epilepsy.

The 124,000 young people affected since then include Holly Crouch, who said the decision by the Department for Work and Pensions (DWP) had left her feeling “like a burden” when “nothing changed but my age”.

She said she had been refused PIP when she applied as a teenager, despite providing evidence from specialists saying she was at risk of sudden, life-threatening epileptic seizures.

Miss Crouch said the DWP had decided she no longer needed support because she had been seizure-free for several weeks.

Holly’s parents subsequently lost their Carers’ Allowance payments but still have to provide constant supervision.

The 21-year-old from East Sussex said: “My condition has not magically disappeared and I’m not faking this.

“Everything was taken so quickly and I felt angry, neglected and like I hadn’t been believed. It was so hard to deal with.”

Holly said she had lost three jobs because of her epilepsy and had to “rely on others for everything” without PIP.

“I’ll never feel like an adult as I can’t do things everyone else is able to, like drive or work,” she said. “My parents even have to be there when I shower or boil a kettle as I could have a seizure.

“I understand there could be changes to conditions, but that’s what reviews are for – you shouldn’t just have your money stopped at 16 when you are not old enough for the process.”

James Taylor, Scope’s executive director of strategy, said the number of young people losing out on financial support was “worrying”.

He called on the government to work with disabled people and “fix our broken welfare system”.

Three-quarters of those deemed ineligible for PIP had failed the DWP’s points-based assessment, according to BBC analysis.

While appeals can be lodged and some people do receive higher awards under PIP than DLA, the BBC heard of young people refused benefits despite the significant impact of their disabilities on daily life.

They include:

• Several who reportedly failed the assessment because they were able to work part-time or attend school or college
• A teenager with Down’s syndrome who told his PIP assessor he could do everything he was quizzed about, but did not explain the intensive support he needed to do so
• A teenager with learning difficulties who said he could cook for himself but did not mention he had broken several microwaves in trying to do so

Concerns were repeatedly raised about PIP assessors lacking knowledge of specific conditions and decisions being taken without recourse to medical evidence or contacting those involved in a claimant’s care.

Disability and welfare rights organisations say the system results in wrongful decisions, with DWP outcomes frequently overturned at tribunal.

The Royal National Institute for Blind People, Epilepsy Society, the National Autistic Society and Contact are among those calling for rapid reform.

• Personal Independence Payment is a benefit for over-16s with long-term physical or mental health conditions

• It is not means-tested and aims to fund the extra living costs associated with having a disability

• Assessments focus on how capable someone is of living independently and use a series of questions about daily activities

• Points are awarded based on the individual’s abilities and what help they need

• Those points are added up to determine whether the threshold for a claim is met

• A third party – like a parent or carer – can apply to represent someone without the capacity to do so themselves

A recent Resolution Foundation report found the number of young people in receipt of disability benefits falls significantly between the ages of 15 and 17.

The think-tank said the failure to qualify – or apply for – PIP was leaving many “facing a financial cliff-edge” as they approached adulthood.

Fightback4Justice, which advocates for disabled people in the welfare system, has called for the process to be more transitional.

Its founder, Michelle Cardno, said: “Young people are being treated as adults from the day they reach 16, when most do not understand the system.”

Sally Donley acted for her son Euan Hawes when he was invited to transition from DLA to PIP.

She says she spent two hours talking with an assessor about the impact of Euan’s disabilities, which include autism, obsessive compulsive disorder and sensory processing disorder.

“His assessment was with a nurse who had no background in his issues and he ended up only scoring points for not mixing with others,” said Ms Donley, from Hampshire.

“Because I said he could cook eggs in the microwave, they said he could cook for himself and they said he goes to college independently – but it’s a specialist college he travels an hour in a taxi to.”

Euan’s claim was refused, but the decision was eventually overturned and he was granted PIP’s highest rates when Ms Donley took the DWP to a tribunal.

“The stress this puts on families is horrendous and cruel,” she said. “You have parents trying to care for children with disabilities and they’re having to take hours to gather evidence for court appeals.

“They need to listen and they need to look at medical evidence.”

The government is being called upon to bring the rest of the UK in line with Scotland, where the transition to adult disability benefits can now take place at 18.

Ms Donley, who supports those calls, added: “Euan’s 18 now and I’m still fighting for him. I know I’ll be fighting for him until my last breath.”

A DWP spokesman said: “Building on our Get Britain Working White Paper, we will bring forward proposals for reforming the health and disability benefits system within weeks, so that it provides children, young adults and their families with the support they need in a way that’s fair on the taxpayer, and helps those who can work secure employment.”

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