Disabled children facing over 200-day wait for essential social care assessment

Families with disabled children are at breaking point, left without the support they need, according to new research* released today by the national disability charity Sense, which reveals the huge delays parents face to be seen by children's social services.

By law, disabled children are entitled to an assessment by children's social services to identify their needs and ensure they receive the necessary support. This is a crucial step in securing support services such as home adaptations, support with personal care and access to day centres.

Parents, however, say they are waiting more than 200 days for their child to be seen by a social worker – with a significant number (17 per cent) waiting over a year. Without an assessment, families are unable to get any support from their local authority. Nearly half of families (48 per cent) say without this support they are struggling to cope.

According to Freedom of Information (FOI) data** Sense has obtained from the government, even when seen, many families experience a delay to receive the assessment outcome. In 18 local authorities the length of assessments is more than the 45-day legal limit, with one local authority almost double the legal limit.

A new Sense report – ‘From crisis to care – making social care work for disabled children', published today, highlights that every step of the process of securing support is a long, drawn-out process for parents. Multiple assessments and prolonged delays are common, and even when families are granted support, local services are rarely available. Nearly a third (32 per cent) of parents say they have been unable to access the support they need from children's social services, and two in five*** (40 per cent) who have been successful in securing social care support say they had to fight their case at tribunal.  

The toll on parents is overwhelming, as this grueling process is leaving many families feeling emotionally drained, with nearly two thirds (63 per cent) of parents telling the charity they're terrified further cuts will be made to their child's care.

Sense's research also reveals the financial strain on families, with the average disabled household spending £1,599 of their own money in the past six months to support their disabled child's needs – that's over £250 a month. With one in 20 families spending more than £5,000 in the past six months, many say they are turning to loans, credit cards and even crowdfunding to plug the gaps.

Social care can have a life-changing impact on disabled children, but the current system is recognised as being underfunded, fragmented and confusing. Research from the Disabled Children's Partnership found a funding gap of £573 million in 2019/20****. Parents have lost confidence in the government's ability to address these issues, with less than a third (32 per cent) of parents believing there is any genuine intent to improve social care for disabled children.

There are 1.8 million disabled children in the UK, and in its new report, Sense calls for the law on children's social care to be strengthened to support them. The report's findings highlight outdated and ineffective laws, some of which date back more than 50 years. The charity wants to see a new legal duty introduced to assess all disabled children, streamlining the process for families and ensuring all children get the best start in life.

Sense, which has been supporting disabled children and their families for 70 years, is also calling on the government to provide long-term, ring-fenced funding for the services disabled children need.

James Watson-O'Neill, Chief Executive of Sense, said:

“Access to high quality support can be life changing – it is the difference between a child feeling lonely and left behind, and a child having the support they need to grow, learn and thrive. But the social care system is failing disabled children and leaving families at breaking point. Parents shouldn't have to fight for the care their children deserve. We need urgent reform to ensure all children get the support they need without facing unacceptable delays.

“Disabled children should not be bearing the brunt of a broken system. We're calling on the government to make disabled children a priority, by establishing a clear and consistent pathway to support and a national threshold to assess all disabled children. These must be backed by adequate funding and investment in local services.”

Case study: ‘I applied to have an assessment four times for my deafblind child before anyone came to see us – and when they did, they said we didn't need any support'

Carla Alderman is mother to Cameron, 12, who is deafblind. Because of his complex needs, Cameron, from Bristol, now has additional support, including intervenors (trained professionals) who visit his home, paid for through direct payments, but to get to this point has been a painful battle for Carla.

“Nothing has been easy when it comes to social care,” Carla says. “Other parents assume that if you have a disabled child, you get a social worker and all of this free support around you, but it didn't happen like that at all.”

It wasn't until the fourth application for a social care assessment was made that a social worker came out to see the family. The first three applications were rejected because Cameron was deemed too young. This meant he missed vital early years support – though the law says a child is entitled to an assessment when it's needed, not based on age. When the assessment was finally carried out, years after first applying, Carla was told that she was coping well with Cameron's needs and did not need intervention from children's social care.

“I wish the social worker had just come in and told me what I was entitled to. I didn't know that carers could come into the home to help us with personal care. I didn't know that there's respite available. I wasn't offered these things because they could see we were coping and thought I could just continue to do it all myself.”

Social care support was briefly put in for Carla, requested by Sense, when she was ill during a later pregnancy. After a few months, they were discharged and the assessment process started over.

“It's really stressful and it just consumed all of my spare time,” Carla reflects, “I felt that if I wasn't pursuing things and chasing people and contacting social care, Cameron would just be forgotten about.”

Eventually, when Cameron was seven years old, he got support at home, from intervenors. A recent arrangement also allows Carla to have a night away from home once a month, when a carer stays over to care for Cameron.

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. To learn more, visit: sense.org.uk/from-crisis-to-care  

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For more information, please get in touch with the Sense media team on mediaenquiries@sense.org.uk or call 0203 833 0611.        

Notes to editors:

*Censuswide polling of 1,000 parents/carers of a disabled child conducted between 25 February 2025 to 3 March 2025.

** Sense sent an FOI request to the Department of Education on the median length of assessments for children whose primary need was identified as child's disability/illness. The data from the FOI is from Children in Need 2024 dataset, available at https://explore-education-statistics.service.gov.uk/find-statistics/children-in-need/2024 and was broken down by national level, regional and local authority.

Local authorities with assessments lasting over 45 days where the primary need identified was child's disability/illness based on Children in Need 2024, data published by the Department of Education

*** Censuswide polling of 1,001 parents/carers of a disabled child under 18 conducted between 4 September 2024 to 9 September 2025.

**** The gap widens, Disabled Children's Partnership (2020) https://disabledchildrenspartnership.org.uk/the-gap-widens/

About Sense:       

Sense is a national disability charity that supports disabled people with complex needs, including those who are deafblind, to communicate and experience the world. Now in its 70^th year, Sense supports children, young people and adults in their home and in the community, in their education and transition to adulthood and through its holidays, arts, sports and wellbeing programmes. In addition to practical support to families, Sense also offers information advice, short breaks and family events, and campaigns for the rights of people with complex disabilities to take part in life. For more information please visit www.sense.org.uk