Exhausting, gruelling and stressful – just some of the words parents have used to describe their experiences of the children’s social care system. It’s a system that exists to support disabled children across the UK, of which there are 1.8 million, but unfortunately the evidence points to a fragmented, underfunded and frankly broken system, that’s letting children down and taking a huge toll on families.
Disabled children are supposed to get support from the children’s social care system following an assessment from a social worker. If a social worker determines a child needs support, for example, in the home or with access to day services, this can be covered by local authority budgets.
But new research by Sense reveals what parents have known for a long time – the huge delays they face to receive support. According to our latest findings, parents are waiting more than 200 days for their child to be seen by a social worker before they can even have an assessment, with a significant number (17 per cent) waiting over a year. Without a referral and assessment, families are unable to get any support from their local authority.
The situation means families that are able will often pay out of their own pocket to meet their disabled child’s health and social care costs, ranging from private assessments to therapy, home adaptations to accessible transport.
According to our research parents of disabled children spent more than £1,500 of their own money in the past six months to meet their disabled child’s needs. That’s over £250 a month.
This cash is from parents’ own pockets and does not include any welfare benefits, with more than half (56 per cent) of parents telling Sense they have had to use their savings to afford support for their child, because not enough support has been provided by their local authority.
The financial toll this takes on families is huge, forcing some to turn to loans, credit cards and even crowdfunding to plug the gaps. The double whammy here is that many parents have to reduce their work hours or quit their jobs entirely to provide support for their disabled children – be that education support, social care support, attending healthcare appointments and more – meaning that families are also sacrificing their incomes. More than half (53 per cent) of parents have cut their working hours, with 40 per cent having to give up work entirely.
As one mum told us: “We were used to living on two salaries, and then mine was basically replaced by £327 per month carer’s allowance. If my son was getting everything that we know he needs, and he was properly supported, I would be in work. But because we’ve been let down, we’re in this situation instead.”
Parents are picking up the pieces of a broken system and fighting for scraps of support. It shouldn’t be this way – with families forced through multiple assessments, facing delay after delay. Many end up in court just to get what they’re entitled to, with 40 per cent of families who have been successful in securing social care support saying they had to fight their case at tribunal to get there.
Imagine the mental toll this constant battle has on families. Many are exhausted, broken and losing sleep, with one parent, forced to quit her job to fight for her disabled son, saying: “I have been keeping myself from having a breakdown. It’s taken a lot out of me and my family. I’m struggling.”
Disabled children and their futures are clearly bearing the brunt of this fragmented, underfunded system. So what can be done to fix it?
The problems in the system are deep-rooted: research from the Disabled Children’s Partnership found a funding gap of £573 million in 2019/20 – a figure that’s most likely risen since this research was carried out. To fix this will require political will.
The government needs to simplify and streamline this confusing system by establishing a clear and consistent pathway to accessing support through new laws, and laws that ensure all disabled children are assessed for their social care needs when they need it. These changes must be backed by adequate funding and investment in local services.
Good social care can be a lifeline for disabled children, but it’s a lifeline out of reach for too many families. The government must make disabled children a priority by reforming this confusing children’s social care system, to give more children the best start in life.
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