‘Your voice’ ahead of summer social care report

4 mins read

Tuesday 20 May 2025

Through Your Voice, we provide parents with a platform to respond to current hot topics from their own lived experience. Together, we can make sure parent’s concerns are front and centre in the ongoing conversations that shape support for children with additional needs.

This September, the Law Commission aims to publish its report following a consultation on major plans to reform disabled children’s social care. We welcomed many of the proposals, which aligned with our social care asks for a new single legal duty to assess disabled children; a new legal framework for disabled children’s social care; and national eligibility criteria.

In this Your Voice, parent Rebecca explains how current social care is failing her family.

You might think care services have stepped up – that’s far from the reality


A parent, smiling, holds her young child in her arms sitting on the sofa in front of a set of windows.


“My beautiful five-year-old son Keir has very complex needs that require round the clock care. He has a rare life-limiting genetic condition and drug-resistant epilepsy. He can’t walk and is blind. I sleep downstairs with him to manage his nightly seizures, which are getting worse. We use a hoist to move him.

“Keir also has gut dystonia, which causes him significant bowel pain and difficulty in passing stools. To manage this, I give Keir daily suppositories/enemas and feed him a combination of blended food and milk through a pump. For his stomach pain, we administer morphine and when needed, sedate Keir with Chloral Hydrate. Keir’s dystonia extends to his limbs and causes his hands and feet to often shake. Again, we administer various medicines to try and reduce these episodes. Keir is under neuro, gastro, and palliative care consultants at Birmingham Children’s Hospital.

“Given the scale of Keir’s needs, you might reasonably think that care services have stepped up to help us. But that’s far from the reality. Since Keir was turned down for NHS continuing care funding in June 2024, we’ve been stranded in a grim no-man’s land between health and social care services with no support. We’re told Keir is ‘too complex’ for social care and ‘not severe enough’ for continuing care funding. We get a tiny four-hour a week short breaks package, only recently upped from two hours, after I repeatedly requested more help. It’s nowhere near enough. 

Right now, help is coming from nowhere

“I’m exhausted and really struggling. I want to sleep at least one night a week. I need help to hoist Keir before and after school. I’d love to be a teacher again and work more to support and empower my family. I don’t mind where this help comes from. But right now, it’s not coming from anywhere.

“In March we appeared on Channel 4 News showing what it is like to care for Keir  without support.  We are not alone. I met our local MP, Cat Eccles, and wrote to to Dudley’s Head of Children’s Disability Services. Neither resulted in any more support for our family.

“Children’s social care law fails too many disabled children. A Disabled Children’s Partnership report found just 1 in 7 families got the correct level of social care support. One in four were told their disabled child did not meet the threshold for a social care assessment. New research by the deaf-blind charity Sense found more than half of families with disabled children struggled to get support and services that meet their child’s needs.

“This is why I fully back the Law Commission’s proposals and Contact’s social care asks. Families like ours desperately need these reforms because, without them, we get little or no support at all.”