Dear Andy Burnham: if you want to fix social care, please don’t forget disabled children like Alf
6 mins read
Tuesday 29 September 2026
Prime Minister Andy Burnham has promised to “grasp the nettle” and tackle England’s broken social care system. Parent carer Emma Chapman welcomes the PM’s ambition. But after years fighting for support for her disabled son Alf, she asks why children like Alf are missing from the big conversation.
Someone finally wants to grasp the nettle
Just after Andy Burnham stepped into the role of prime minister, I listened to him on a podcast called ‘How to Fail’. I listened to him talk about the broken social care system in this country and felt somewhat hopeful that the heartache I was suffering may soon come to an end. Families like mine would finally get the help they so desperately need. As the parent of a child with a physical disability and epilepsy, I know only too well that our social care system is broken, and it needs brave politicians willing to fix it. The Prime Minister addressed the issue again last weekend, talking of “ripping the plaster off” and creating a national system where everybody contributes and everybody is covered. These are big and welcome ambitions. But I was also struck by something that parent carers like me have become very used to.
Where are the children?
Disabled children need social care too
When politicians talk about fixing social care, they almost always seem to mean adult social care. But thousands of children and families are being pushed through a system that breaks them before providing any help.
Alf has cerebral palsy, epilepsy, and high care needs. Our everyday life is 24/7 care. He needs support with all everyday tasks, including with playing, which can’t be taken for granted. His night-time seizures mean we’re constantly on alert, often getting up several times a night to care for him and keep him safe. As Alf gets bigger, the physical demands on us get bigger too. We’ve been fighting for increased support since September 2024. Although our hours were eventually increased, we still can’t recruit anyone to provide them, and our requests for overnight support continue to be refused.
We love Alf and caring for him is a privilege. The problem is being expected to do this without the support our family needs.
We recently spoke to Channel 4 News about our experience of trying to get social care support. I described it as a process of being “gas-lighted”. You ask for help because you know your family cannot keep going as it is, and instead of receiving that help, you can find yourself having to prove and re-prove just how difficult life has become.
Constant battle
Something I said to Channel 4 that didn’t make the interview was that I feel both my children have been robbed of happy mummy moments. I’ve spent far too much of their childhood crying and having panic attacks, because accessing the support Alf needs has become a constant battle. At times, social care has felt more like financial gatekeeping than a service designed to support our family.
We are far from the only family experiencing this. I’ve spoken to so many families who’ve felt their social worker was more interested in their home décor than the needs of their disabled child.
Research by the University of Birmingham found that 41% of parent carers surveyed had experienced suicidal thoughts, a devastating statistic that highlights just how urgently families need better support.
In my experience, families rarely approach social services because they want to. They do so because they’re approaching breaking point, often following advice from a professional. Inviting a social worker into your home and asking for help is incredibly intrusive. To then be told your child doesn’t meet the threshold for support, or to be awarded a handful of hours for which you can’t recruit a carer, is devastating. If a family cannot recruit carers to deliver the support they’ve already been awarded, what does that support actually achieve?
Why should Alf have to wait until he is 18?
This is the bit I find so hard to understand. Disabled children become disabled adults. Alf has seven more birthdays before he is 18. Why should families like ours have to struggle through those childhood years before disabled children’s social care system becomes a national political priority? The lack of support in childhood doesn’t disappear at 18. It feeds directly into the pressures on adult social care. You cannot truly fix the system if you leave it broken for the first 18 years of a disabled person’s life.
Good social care in childhood isn’t just about helping parents cope. The right support – short breaks, personal care, help at home, overnight care and home adaptations – enables disabled children to be safe, thrive and take part in family and community life. It gives parents a chance to be mum and dad rather than exhausted, sleep deprived carers. It also stops families being pushed towards crisis.
Reason to be hopeful
In November 2024, I took part in a Law Commission discussion group with other parent carers, sharing our experiences of trying to access social care for our disabled children. Until then, I genuinely thought it might just be our local authority in Derbyshire where families were experiencing these problems. I was both shocked and strangely comforted to discover that families across the country were fighting similar battles. We weren’t alone, and finally, someone was listening.
The Law Commission has since published its comprehensive review, setting out 40 recommendations for reform.
For parent carers, that matters enormously. Currently our rights and children’s entitlements sit across complicated, decades-old legislation. Families shouldn’t need to become experts in social care law simply to understand what help their child may be entitled to. We have an opportunity to make the system clearer, fairer and kinder.
Please grasp the whole nettle
My message to Andy Burnham is simple: Please do grasp the nettle. Be the Prime Minister who finally fixes social care. But please don’t forget the children.
Implement the Law Commission’s blueprint for modernising disabled children’s social care law. And if we are going to have a national conversation about what a decent social care system should look like, disabled children and their families must be part of that from the outset.
Alf shouldn’t have to wait until adulthood for his social care needs to matter.
Neither should any other disabled child.
Every Child Matters.
Add your voice
If you’re a parent carer, grandparent, family member or simply believe disabled children deserve better, you can help.
Email your MP through Contact’s campaign and ask them to support reform of disabled children’s social care. It takes around a minute using Contact’s online template.