My name is Izzi, and I am a mother of a severely autistic child. I am starting this petition because I believe there needs to be greater scrutiny and a more robust assessment process for children’s Disability Living Allowance (DLA), particularly where claims are based predominantly on non-medical and functional difficulties such as autism, ADHD, learning difficulties, communication difficulties and educational or behavioural needs.

This issue is deeply personal to me.

I am the mother of a severely autistic daughter who is non verbal and still wears nappies. She has significant additional care and supervision needs, yet despite the level of care she requires, she currently receives middle rate DLA, which is wrong in itself. 

I know first-hand how demanding it is to care for a child with complex additional needs. I also know how exhausting the DLA process can be for genuine SEN parents.

We are expected to complete lengthy forms explaining, often in painstaking detail, exactly what our children can and cannot do, how much care they need, how they behave in different situations, what happens during the day and night, and how their needs compare with those of other children their age. The process can be emotionally and physically exhausting for parents who are already struggling to cope with the realities of caring for a disabled child.

And yet, I have become increasingly concerned about the reliability of the information being provided by some claimants.

I have personally had people tell me that they have exaggerated or lied on DLA forms in order to obtain a higher award. I have heard people describe children as being in disability pushchairs when, according to what I have personally witnessed, they are not. I have heard people say their children are still in nappies when I have known them not to be. I have also heard claims that children do not sleep when, from my own knowledge of those children and conversations with their parents, they do.

I am not suggesting that every higher-rate DLA award is fraudulent, nor am I suggesting that a parent should be judged simply because their child’s presentation differs from another child’s. Autism, ADHD, learning disabilities and other conditions can present very differently from child to child.

My concern is about whether a system based heavily on written information can always distinguish between genuine, substantial additional needs and information that may have been exaggerated.

The current DLA guidance itself recognises that children’s entitlement depends on the additional care and supervision they need compared with a child of the same age without a disability. The care component can range from the lowest rate through to the highest rate depending on the extent of those needs. (GOV.UK⁠)

The DLA process also allows supporting evidence such as reports from occupational therapists, GPs, consultants, social workers, learning-disability teams, carers and family members, as well as EHCPs and other educational evidence. (GOV.UK⁠)

But where the main evidence is based on what a parent reports about their child’s day-to-day functioning, I believe there should be circumstances where an independent face to face assessment of the child is considered necessary.

I am not asking for disabled children to be subjected to unnecessary or distressing assessments.

I am asking for a system that is capable of identifying when the written information provided needs to be independently verified.

There is also an important issue around fraud.

Official statistics currently estimate that DLA overpayments caused by fraud were around 0.2% of DLA expenditure in FYE 2026. However, these figures should not be interpreted as proof that every instance of dishonest reporting is being detected. DWP’s own methodology acknowledges that some cases cannot be conclusively categorised because there is insufficient evidence, and that fraud and error statistics are estimates based on sampled claims and the department’s detection processes. (GOV.UK⁠)

I have also spoken to people who have worked in or with benefit fraud investigations who have explained to me that proving DLA fraud can be extremely difficult, particularly when the alleged circumstances concern a child’s day to day behaviour and care needs.

A child’s needs cannot simply be monitored every hour of every day. It is incredibly difficult to establish what happens behind closed doors without intrusive surveillance or extensive investigation.

That raises a wider safeguarding question that I believe deserves proper consideration: where there is deliberate fabrication or exaggeration of a child’s disability or care needs for financial gain, should there be greater recognition of the potential safeguarding implications?

There are recognised safeguarding concerns around situations in which a carer deliberately fabricates or induces illness or disability in a child. I am not saying that every dishonest DLA claim amounts to this, because it clearly does not. But where someone deliberately presents a child as significantly more disabled than they actually are for financial benefit, I believe the possibility of wider safeguarding concerns should not simply be ignored.

This petition is therefore not about taking support away from genuinely disabled children.

It is about protecting the integrity of the system so that the children who genuinely need the highest levels of support are properly recognised.

As a mother of a severely autistic, non-verbal child who remains in nappies, I find it incredibly difficult to watch situations where I believe the system may be being manipulated while genuine SEN families are exhausting themselves trying to accurately document their children’s needs.

I believe there needs to be a fairer balance between trusting what is written on a form and independently verifying what is actually happening.

I am calling for:

Face to face assessments to be considered for children’s DLA claims where the claim involves predominantly non-medical or functional difficulties, including autism, ADHD, learning disabilities, communication difficulties and significant educational or behavioural needs.

Assessors to have appropriate specialist knowledge of autism, ADHD, learning disabilities and other neurodevelopmental conditions.
Parents to be given the opportunity to explain their child’s needs in person rather than relying solely on lengthy written forms.
Greater use of independent evidence from schools, SENCOs, EHCPs, speech and language therapists, occupational therapists, paediatricians and other professionals who know the child.
Stronger processes for identifying significant inconsistencies between a DLA claim and reliable evidence.
Better investigation of suspected deliberate misrepresentation, while protecting families who are making genuine claims.
A system that recognises the enormous burden placed on genuine SEN parents who repeatedly have to document and justify their child’s disabilities.

Disabled children deserve support. Genuine SEN families deserve to be believed. But the system also needs safeguards to ensure that awards are based on accurate information.

I am asking people to support this petition because I believe that seeing the child, understanding their circumstances and properly considering independent evidence could help create a system that is fairer for everyone — especially the children whose needs are genuinely severe.

My daughter deserves a system that recognises her real needs. So do every other disabled child and their family.

Please sign and support this petition for greater accountability, proper assessment and fairness in children’s DLA.