A mum who had to battle for more than a year to get specialist support for her deafblind child told Sense she is not “confident” reforms to the system will actually make a difference
A mum who had to battle for more than a year to get specialist support for her deafblind child told Sense she is not “confident” reforms to the system will actually make a difference.
Kimberly Hind, who lives in North West England, said her son Harvey has been left frightened of other children after having a “horrific” experience in a mainstream nursery.
The now five-year-old – has very limited vision and uses bilateral cochlear implants to help him hear = was forced into a busy, inappropriate environment while Kimberley fought to get an Education, Health and Care Plan (EHCP) for him.
Ms Hind said she fears any reforms won’t actually make a difference because of strain on the system, warning: “You can change anything by law but the local authorities still won’t follow it. They don’t have the staff, the funding or the training. I’m nervous there might even be funding cuts. It is very worrying.”
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The mum said Harvey lost the nursery place he was offered from September 2024 while waiting more than a year for an EHCP – far longer than the 20-week legal deadline.
She continued: “The ordeal we went through to get Harvey’s EHCP, which he was fully entitled to, was horrific for him and our whole family. Harvey lost his pre-school place at a specialist school because his EHCP took so long and he struggled severely in a mainstream nursery.
“I couldn’t physically make him go in because he was so anxious. He’d make himself sick and try and harm himself – he’d never done that before.
“And at nursery, he was pulling off the external part of his cochlear implants for the whole day. Normally he loves his implants but I think he was so overwhelmed he didn’t want to hear anything.”
Ms Hind said Harvey is now settled at a special school but his experience has had lasting effects. She said: “Now Harvey is at his special school, in a small class of five instead of a big group, he’s like a different child. When he wakes up in the morning the first thing he says to me is ‘Mr Jones’ – that’s his class teacher.
“He runs out the door to his school taxi and comes back home extremely happy. He’s come on so well cognitively too. Everyone says he’s very bright, especially with maths.
“But the ordeal Harvey went through, when he was missing out on specialist provision, has had lasting effects. He loves adults and he loves his brothers but he’s still frightened of other children and won’t interact with them.”
It comes as research today shows half of parents of disabled children with complex needs fear plans to reform the special educational needs system could strip away the limited support they receive. Disability charity Sense’s study showed parents frequently report long delays, inconsistent decisions and costly, adversarial processes when trying to get support.
Nearly half (48%) described the process of securing special educational needs and disabilities (SEND) support as stressful, while almost a quarter (22%) said their child’s school was not delivering the legally binding support set out in their Education, Health and Care Plan (EHCP).
Two in five parents (40%) said they had been forced to reduce their working hours due to a lack of appropriate support for their child, while more than a third (35%) had left their job altogether.
The Government is planning to unveil plans to overhaul the Special Educational Needs and Disabilities (SEND) system within weeks. Ministers have vowed to tackle the types of issues raised in Sense’s research, including engaging with parents on
::: Censuswide, on behalf of Sense, surveyed 1,000 UK respondents who are parents or carers of a disabled child with complex needs aged in November.