“I have been keeping myself from having a breakdown,” said Tiya, who is based in London. “It’s taken a lot out of me and my family.”
The mum was forced to give up her digital marketing job in July 2023, as she and her husband Alexander, who works for a pharmaceutical company, have been left fighting an “exhausting” battle to get support for their son Arun.
The five-year-old has developmental language disorder (DLD) – a life-long condition making it difficult for him to express, understand and use language.
Tiya said there is not enough awareness of the disorder and a lack of specialist provision for it, too.
She said her family doesn’t currently access any support from children’s social services and they haven’t been given any insight into potential support they could get, either.
“I’m struggling and I could do with some additional help,” Tiya said, suggesting respite care as an option, or even access to holiday clubs where people understand her son’s disability.
“It’s only me and my husband,” she said, noting they have no family nearby to help. “I think I’ve voiced that to people who could have helped, but I’ve never been made aware of my eligibility for any other kind of support, like respite.”
The family’s situation is not unique.
New research from the national disability charity Sense revealed nearly a third (32%) of parents of disabled children said they have been unable to access the support they need from children’s social services.
Parents are paying huge sums of money to support their disabled children
Disabled families are legally entitled to social care support, which could include help such as washing and dressing, home adaptations, access to day centres and accessible transport.
Sense said much of this should be funded by local authorities, but new research from the charity suggested many parents are having to reach into their own pockets.
The average family has spent more than £1,500 of their own money in the past six months to support their disabled child’s needs, the charity said.
And one in 20 families has spent more than £5,000 in the past six months, with many turning to loans, credit cards and even crowdfunding to plug the gaps.
The financial cost is intensified as some have to reduce their work hours, or quit their jobs entirely, because they don’t get enough care support for their children.
Sense found 40% of parents have had to give up work
Mum-of-three Kimberly has been forced to give up her job and sacrifice her income as she fights for support for her deafblind son Harvey, who is four.
Kimberly, from Lancashire, said right from the start she had to push to get Harvey what he needs – including paying privately for an ophthalmologist when he was eight weeks old after they struggled to get an NHS referral.
The family, who are supported by Sense, requested an occupational therapist to look at the accessibility of their home, but it was declined.
They are now having to sell their home to move somewhere more suitable – another huge cost.
Though she briefly returned to her full-time job in a school (as she did after the births of her two other children) Kimberly stopped working when Harvey was a year old.
She took on some work the following year, but in January 2025 she made the difficult decision to stop as she couldn’t find a nursery that met Harvey’s needs.
“We were used to living on two salaries and then mine was basically replaced by £327 per month carer’s allowance,” said Kimberly.
“We don’t get any benefits – it feels like we’re in a grey area where we can’t get support because of my husband’s job, but we also need more than one income.
“If Harvey 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.”
“We don’t get any benefits – it feels like we’re in a grey area where we can’t get support because of my husband’s job, but we also need more than one income.””
– Kimberly
Sense said multiple assessments and significant wait times are commonplace when it comes to accessing support – and even when funding is offered, the services families need may not be available.
The process is leaving families feeling emotionally drained, with almost two-thirds (63%) of parents polled terrified about their disabled child’s support being cut further.
What needs to happen now?
The charity is calling on more families to share their experience of the social care system. It is also calling on the government to provide long-term, ring-fenced funding for the services disabled children need.
James Watson-O’Neill, the charity’s chief executive, said: “The children’s social care system exists to support children to grow, learn and thrive, but instead children are being let down and families are at breaking point.
“Parents are left fighting for scraps and are forced to pay out of pocket for the support their child should be entitled to. It’s an injustice and new laws are urgently needed to stop more disabled children missing out.”
The charity is calling on the government to establish “a clear and consistent pathway to support and a national threshold to assess all disabled children”.
“These must be underpinned by the funding and infrastructure to invest in more local services across the country,” said Watson.
“Disabled children should not be bearing the brunt of a broken system and we’re urging the government to make disabled children a priority.”
HuffPost UK has contacted the Department for Education for comment and will update the article when we hear back.
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