Denied By Default | Fix the child DLA system

The rallying cry

This system is not fit for purpose

Behind every refusal letter is a family running on empty.

Parents of disabled children are filling in a 40-page form between hospital appointments, night feeds and airway monitoring. They wait months for a decision made by someone with no medical training, using guidance written in 1991 that doesn't even contain their child's condition. Then the refusal arrives, and the fight starts again: mandatory reconsideration, appeal, tribunal. The families with the least capacity to fight are being asked to fight the hardest.

Most never make it that far. They're too exhausted caring for their child to take on the state as well, so they accept the refusal and lose support they were entitled to. The ones who do fight win over 70% of the time at tribunal, which tells you everything: the evidence was there all along. The system just refused to read it.

This isn't a system with a few flaws to patch. Medical services abolished. Paediatric guidance stripped out. Expert oversight gone. Medical conditions missing entirely from the decision makers' own handbook. The child DLA system needs a full overhaul, and we're going to force one.

Share your family's story

How this campaign started

Isaiah's story

Refused twice. Won at tribunal.

My son Isaiah is 2. He has achondroplasia, the most common form of dwarfism and a recognised disability under the Equality Act 2010. He needs help with eating, drinking, sleeping, moving and playing, and he uses specialist equipment for daily life. He is under eight specialist medical teams and has averaged at least one medical appointment a week since birth. He has already had surgery for obstructive sleep apnoea and is scheduled for urgent neurosurgery for severe spinal compression.

Despite all of this, he was refused DLA twice, at 9 months and at 15 months. None of his specialists were ever contacted. The DWP said "all infants have high care needs", treating his night-time airway risk and medical vulnerability as typical infant behaviour.

I began investigating how a child with this level of need could be assessed as having the same care needs as an average two-year-old. What I uncovered was a systemic failure, built up over decades of DLA assessment protocols.

In May 2026, I took Isaiah's case to tribunal. He was awarded the highest rate of care. The judge said the medical evidence was so overwhelming there was no need to ask me a single question. The same evidence the DWP refused twice.

Isaiah's mum, founder of Denied By Default

The evidence

A paper trail of neglect

Compiled from official guidance, the National Archives, DLAAB annual reports and FOI requests.

1991

The Disability Handbook is written

Medically rich guidance, written by medical professionals with advice from the DLA Advisory Board and disability organisations. It included a glossary defining kyphosis, hypotonia, stenosis, apnoea, and achondroplasia, twelve years before achondroplasia was even officially recognised as a disability.

Expert-led

2003

Charities raise the alarm

Disability charities including Mencap, the Down's Syndrome Association and the National Autistic Society tell the DLA Advisory Board that claims for children have become tougher, and that decisions are being overturned on appeal.

Ignored

2006

The Board's own study confirms it

The DLA Advisory Board finds that claimants under the age of five are less likely to be able to demonstrate the criteria for needing additional help when compared to peers of a similar age. The DWP has known the system fails under-5s for nearly 20 years.

On record

2008–13

Expert oversight disappears

The DLA Advisory Board stops meeting after 2008 and is formally abolished in 2013. Yet today's Decision Makers Guidance still claims the medical guidance is produced "in consultation with the DLA Advisory Board". A body that no longer exists.

Abolished

2011

The DWP cannot explain its own handbook

An FOI request asks who wrote the Disability Handbook, whether it was peer reviewed, and how it would be updated. The DWP cannot answer a single question. Instead of answering, it deletes the chapter in question from the guidance.

Unanswered

2015

Medical Services vanishes

The Atos Healthcare contract that operated as "Medical Services" ends. New assessment contracts are awarded for PIP, UC and ESA, but nothing for DLA. The current guidance still tells decision makers to refer difficult cases to Medical Services, a team that has not existed for a decade.

No replacement

May 2026

A judge needed no questions

After two DWP refusals, Isaiah's case went to tribunal and he was awarded the highest rate of care. The judge described the medical evidence as overwhelming and asked no questions. The evidence never changed. Only the person reading it did.

Overwhelming

Today

Copied, cut, and out of date

Large sections of today's A-Z medical guidance are copied and pasted from the 1991 handbook, while the glossary, the developmental milestone chart and whole conditions have been removed. It has been updated just 18 times in 11 years. Decision makers are assessing disabled infants with less information than their counterparts had in 1991.

Still in use

Our demands

What needs to change

Rebuild proper medical guidance

Restore full paediatric, rare-condition and infant-specific guidance so decision makers can assess disabled children safely.

Reinstate expert oversight

A new independent paediatric and disability advisory panel must replace the abolished DLA Advisory Board.

Introduce a risk-based test for care

Care that prevents harm, such as airway monitoring, must be recognised as fundamentally different from ordinary infant care.

Fix unfair rules for under-5s

Reform the same-age comparison model so disabled infants are not judged against healthy peers in ways that erase their needs.

Mandatory training for decision makers

Specific training on paediatrics, rare diseases, infant care and interpreting complex medical evidence.

Restore a medical advice route

Re-establish a clinical escalation pathway so rare and complex cases are reviewed by qualified medical professionals.

Fulfil legal equality duties

Conduct proper Equality Impact Assessments on all changes to child DLA guidance, past and present, as the Public Sector Equality Duty requires.

Review unsafe decisions

Review recent refusals and overturn rates for infants and rare-condition children to identify and correct systemic harm.

Recognise hospital care and travel

Frequent appointments, specialist monitoring and hospital travel must count as disability-related care, not routine parenting.

How we get there

A multi-pronged fight

Press

Working with journalists who cover government failure and oversight to bring the paper trail into the open.

Inquiry

Pressing the Work and Pensions Committee for an inquiry into DLA. There has not been one since PIP was introduced.

Political pressure

Writing to local MPs and MPs focused on disability rights, and building towards 10,000 petition signatures for a government response.

Charity backing

Building support from disability charities and organisations who have been raising these issues for two decades.

Grassroots

An awareness campaign through parent groups, so families fighting individual claims can see the system behind their refusal.

In reserve

If the DWP will not act, legal routes remain open, including a systemic maladministration complaint to the Parliamentary and Health Service Ombudsman.

Get involved

We're looking for 200 families

Our first goal is 200 core supporter families. Parents of disabled children who know this system, whether you've been refused, fought an appeal, or are dreading the form landing on your doormat, and who will lend their voice as we push for a petition big enough that the government has to respond.

Become a core supporter family

You don't need to have been refused DLA to join. If you're a parent of a disabled child and you're close to this issue, we want you as one of our first 200 families. Your voice, your story and your network all move this forward.

Join the 200

Sign and share the petition

10,000 signatures gets a written response from the government. 100,000 puts the issue in line for a debate in Parliament. Every signature and every share gets us closer.

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Write to your MP

Ask your MP to call for a Work and Pensions Committee inquiry into child DLA. We have a template letter you can send in two minutes.

Get the template