Disabled children are bearing the brunt of a broken social care system – they deserve better

“I never relax. I rarely feel the absence of stress and I’m knackered. I feel like this situation is killing me.”

This is just one experience, shared with us at Sense, from a parent trying to navigate the children’s social care system. It’s shocking, but far from unique – the children’s social care system is failing disabled children and their families, and it needs to change. 

Disabled children’s social care exists to help children and their families to live happy, fulfilling lives. It can support with personal care, home adaptations, funding contributions to access hobbies that are inclusive, such as one-to-one swimming lessons, and access to day centres. It can be life-changing, helping children to get the best start in life, and giving parents a well-deserved break and respite. But to get this support parents must navigate a confusing, fragmented system, and it is taking a serious toll on families.  

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Currently, to access support, families must contend with a patchwork of systems straddling social care, health and education, governed by laws dating back decades, and delivered by various departments working in silos. Multiple assessments are often needed and delays are common, with new research from Sense showing the average family waits more than 200 days to even be seen by children’s social services. 

Being seen by a social worker isn’t a guarantee of support. One mother told us she made four applications for a social care assessment before a social worker came to see her and her deaf-blind son, meaning he missed out on vital early years’ support.

When the assessment was finally carried out, years after first applying, the family was told that they were coping without intervention from children’s social care and left them to it. With 1.8 million disabled children living in the UK, and just 32,150 of those assessed by social services last year, the number of children missing out on support is potentially colossal.  

This particular family now has social care in place, and it’s made a huge difference to their lives – but parents should not be forced to fight tooth and nail for support they’re entitled to, in this case for years. The emotional and financial toll this can have is huge, with Sense’s research showing the average parent has spent more than £1,500 in the past six months covering the health and social care needs of their disabled child. That’s more than £250 a month. Almost half (47%) of families have had to borrow money to support their disabled child, with more than a quarter (28%) turning to fundraising, such as crowdfunding, to balance the books. 

This situation is indefensible – and it’s disabled children and their futures bearing the brunt. So what needs to be done? 

The government needs to simplify and streamline this confusing system by establishing a clear and consistent pathway to accessing support, and strengthen the law to ensure all disabled children are assessed for their social care needs. These changes must be backed by adequate funding and investment in local services.  

Understandably in the current climate, families are doubtful things will change soon – just a third (32%) of parents believe there is any genuine intent from government to improve social care for disabled children. 

Good social care can be the difference between a child feeling lonely and left behind, and a child having the support they need to grow, learn and thrive. That’s why we’re calling on the government to show they do care, and to make disabled children a priority by reforming the broken children’s social care system.   

Sense’s new report ‘From crisis to care – making social care work for disabled children‘ is out now. The charity wants to hear from more families on their experience of the social care system. Learn more.

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