We’ve been forced out of work to look after our disabled kids – we can’t survive this pressure without government help
PARENTS of disabled children are being forced out of work as their kids aren’t getting the correct level of care or access to vital services.
Three quarters have turned down work and half have abandoned employment completely as they plug gaps in crucial health, education and social care, found the Disabled Children’s Partnership’s Failed And Forgotten survey.
The poll of 2,200 parents and carers of disabled children shows increasing frustration at the lack of action by the Government.
The stats come as families await the response of the Government’s SEND review which promised the “right support, in the right place and at the right time” a year ago.
Since 2019, The Sun’s Give It Back campaign with the DCP, which is made up of 110 charities, has demanded the Government give back an annual funding cut for vital care and services.
The amount taken away from families rose to a staggering £573million in 2021. Worryingly, the DCP study also found seven in ten parents say their disabled child’s health is deteriorating due to the lack of professional care.
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Linda Cantrill, 53, from Exmouth, Devon, sacrificed her career in engineering, while her husband Scott, 49, has taken a pay cut, to look after their eight-year-old twins Reddington, who has complex needs, and Teddy who has autism.
She says surviving without the crucial therapies the boys need is a full-time job and added: “This is killing me.
“Parents of disabled children have to pick up so much because all the other systems around our kids have failed.”
Chair of the Disabled Children’s Partnership Amanda Batten said: “Delays in treatment, equipment, mental health support and therapies are not only ruining the life chances of disabled children, they are also putting them at risk of harm.”
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‘A choice has been made not to provide help’
ELISSA Bruce, 32, from Nuneaton, Warks, is mum to Ivan, three, who has rare chromosome disorder Phelan-McDermid syndrome.
Elissa had to quit her job in the local council housing department in January due to the amount of time she needed to look after Ivan and take him to medical appointments. The family now relies on one income from her husband.
She said: “I’d love to have my job. I’d love the money.”
Ivan, who is non-verbal and struggles with mobility, can only go to nursery two half-days a week as he needs round-the-clock, one-to-one care. Ivan receives Disability Living Support but also relies on charity for vital items such as a safety access bed.
During a long hospital stay Ivan had to be discharged every night as the trust didn’t have the right equipment to keep him safe.
And because of his low muscle tone, he gets an impacted bowel, which can be dangerous if untreated, but the care service he was under has been decommissioned and the family now face 12-hour waits in A&E each time Ivan needs an enema.
Elissa said: “This is a choice that has been made, to not provide the services for disabled children."
