More than 300,000 disabled children in the UK are being blocked from accessing disability equipment, according to a charity.
Newlife, a charity for disabled children, said 50% of local councils are blocking specialist car seats for children with special needs as part of a ban on offering special kit.
These specialised seats are required to keep children with musculoskeletal disorders, seizure disorders or a compromised airway safe.
Many councils have stopped providing specialist equipment thanks to a policy that says they can deny certain types of kit ‘under any circumstance’.
The charity also found walking frames, specialised buggies, arm supports and high-sided safety beds weren’t be supplied.
Newlife has given equipment to more than 1,200 families in crisis in the past year alone, at a total value of over £1,100,000.
Clare Dangerfield, Campaigning and Public Affairs Manager at Newlife, said: “It’s simply not acceptable for councils to use to blanket ban policies to push costs back onto parents.
“While a standard car-seat costs just £100, the kind of adapted seat required by disabled and terminally ill children can cost up to 35x as much.
“Forcing parents to cover the cost of equipment denied by their council due to austerity measures drives families into poverty.
“Policies like these also cause incredible amounts of unnecessary suffering. This is just not acceptable.”
The findings come 12 months after Newlife’s ‘Fix the Four’ report which first exposed the impact that blanket ban policies have on children and families across the UK.
A Freedom of Information Act request by the charity identified 83% of councils in England were refusing to provide specialist car seats, potentially affecting 568,826 disabled children in 2018.
Since 2018, Newlife have been working alongside local authorities across the UK to overturn these blanket bans and improve disability equipment provisions for children, with 40% fewer local authorities using blanket bans compared to November 2018.
Three-year-old Florence needs a specialist car seat to keep her safe on trips, otherwise her neck and head become unsupported and she is in danger of blocking her airways.
Born with the neurodevelopmental disease, SCN2A, Florence suffers from severe epilepsy and has terrifying seizures often 50 -100 times a day.
Her condition also means that she has delayed development – her mental age is six months – and finds it difficult to support herself due to poor muscle tone and choreoathetosis, causing her involuntary twisting and writhing.
Her inability to support herself means that unlike other little girls her age, she cannot sit up by herself or hold her head up. This could be fatal.
Despite this risk to her life, she was denied equipment to help her.
Without a specialist car seat, the whole family is on edge for car journeys in case Florence slumps in her seat.
But with siblings Vivian, 2, and Oliver, 4, there is no room for mum Jennifer to sit in the back and make sure that her little girl is safe.
On a car journey to Belfast, Florence’s head slumped forward, causing her to vomit and breathe liquid into her lungs.
Jennifer was forced to call an ambulance and Florence was rushed into hospital overnight.
Jennifer said: “It was terrifying. By the time I got her out of the car I didn’t know how much fluid she had breathed in, and it wasn’t safe to put her back in the car to take her to a hospital.
“At that point we knew we needed a specialist seat to keep Florence safe.”
She asked the local authority for a care seat but was turned down. She applied to Newlife’s equipment grants service who managed to get one a few months later.
