Desperate families of disabled children are begging PM Liz Truss to increase disability benefits —as a matter of life or death.
Worried parents face huge bills to keep lifesaving equipment running.
And while six million disabled families will receive an extra £150 from the Government this month, many say the amount is an insult.
Full-time carer Kathryn Crockford, 38, a mum to two disabled children, says: “We have started rationing hospital appointments because we can’t afford to attend them. We are being priced out of staying alive.”
Eighty charities are demanding an Energy Assistance Payment of £300, a doubling of the £150 disability payment – and for benefits to be raised in line with inflation.
Despite a new energy cap of £2,500 a year, the support charity Contact says thousands of families face bills of £4,000 as they run ventilators and oxygen saturation machines.
Household incomes for the families of the UK’s one million disabled children are often lower, with half of parents giving up work to care for the youngsters. On August 26, 83 charities including Contact, Scope and Together for Short Lives, wrote to Ms Truss and then Tory leadership rival Rishi Sunak calling for an emergency support package. They say they are yet to receive a response.
Today they call on Ms Truss to announce an immediate increase in disability benefits – as well as the energy assistance payment to replace local NHS medical grants.
Amanda Batten, CEO of Contact, says: “While the latest announcement represents a welcome package of support, it does not address the extra energy costs families with disabled children face due to running lifesaving equipment. These costs have rocketed since the April price cap increase. Families pay nearly £1,600 extra per year on running life-saving and other health-related equipment that can’t be switched off.
“An immediate increase in disability benefits, as well as an energy assistance payment, will help ensure those who need vital equipment for their survival are given the financial help they need.”
Stephen Kingdom, of the Disabled Children’s Partnership – a coalition of 100 organisations – said: “Disabled children and their families were more likely to live in poverty even before the energy rises. Parents have to give up work to care and manage hospital appointments. They often have to pay for therapies or medical and educational support that authorities fail to provide. Add to this increased energy costs and that piles even more pressure on families whose lives are difficult any way. They must have increased disability benefits and energy assistance.” James Taylor, of disability equality charity Scope, said: “The cost of charging a powered wheelchair has doubled in a year. Spiralling costs have already left many disabled households in debt and on the brink.
“Life costs more if you are disabled. Government support needs to be better targeted – and increased.”
The Department of Work and Pensions said six million disabled people will receive the £150 payment as part of a £37billion package. Eight million low-income households will get at least £1,200 of direct payments, while everyone will receive a £400 energy bills discount in October.
Mum's fear as disabled kids mean bigger bills
Carer Kathryn Crockford and her husband George, an audit manager, face hefty bills to care for disabled kids Xander, 10, and Rowan, eight.
Rowan, who uses a wheelchair, has genetic condition tubulinopathy. He has profound learning disabilities and complex needs including epilepsy, cerebral palsy, autism and global development delay. He is visually impaired and has challenging behaviour, while Xander is deaf and has autism, ADHD and anxiety.
The family’s energy bill is currently £150 a month but as they go into winter it will rocket because they need 24/7 heating, lighting and access to electricity to charge wheelchairs and medical kit. Kathryn, of Swanley, Kent, is terrified the family won’t be able to afford to power a hoist, stair lift, bed lift and electric wheelchair.
She says: “Families with disabled children are made to feel a burden. We are ignored.
“Rowan can’t see at all in low light so we have to have bright lights on all the time. He has sensory equipment such as fibre optic lights and a bubble tube which are energy intensive, but vital to stimulate the vision he has and for it not to go backwards.”
Rowan also has white noise playing all night to help him sleep. Meanwhile, Xander’s cochlear implant and batteries need charging daily. Kathryn adds: “I am so worried it keeps me awake at night. There is nothing else I can cut back on. Offering an extra £150 payment is a tiny drop in a massive ocean.
“I’m terrified we won’t be able to keep the house warm and chest infections requiring hospitalisation will be more frequent for Rowan.”
So scary, says dad in battle to get by
Little Skye Hayes has the chronic lung disease pulmonary hypertension and complex medical needs after being born four months premature.
The two-year-old spends 16 hours a day on a ventilator, which must be kept on all night, along with an oxygen concentrator and saturation machine. Single dad Taran, 27, of Orpington, Kent, is full-time carer and relies on £1,560 a month in Universal Credit, plus Skye’s disability living allowance of £92.40 a week.
But after rent at £500, food and other expenses, he can’t afford the electricity bill – already £300-£400 a month. Taran says: ”Skye is non verbal, tube-fed, has heart problems and breathing problems.
“She needs a sterile environment. I haven’t paid the electricity for two months now. I have no idea what to do. I can’t take her off the ventilator, I can’t not give her oxygen. But I can’t afford the equipment that keeps her alive. It is scary. Skye can’t be in a cold house. If she gets pneumonia it will be life threatening.”
Referring to the £150 cost of living payment as “a joke”, he adds: ”It’s the most vulnerable families that are being hit the hardest and this is so wrong, so unfair. I want the Government to do much more to help disabled families and recognise our plight.”
£580 a month just to keep teen alive
It already costs £450 a month to run lifesaving equipment for Callie Aspley, 14 – and the bills are set to go up at least £130 under the new price cap.
Callie has rhizomelic chondrodysplasia punctata, a severe form of dwarfism, and dad Dan, 44, is a full-time carer, while mum Marie works.
The teenager cannot speak, is tube-fed and relies on a ventilator 22 hours a day to stay alive. Oxygen concentrators and SATs monitors are on 24/7.
Dan, of Tamworth, Staffs, says: “It’s impossible. If we turn it off, she dies. But we don’t know how we will pay for it. Our energy costs are so much higher than an ‘average’ family and a big chunk is paying for Callie’s electrical equipment. Her disability is life-limiting and now we have extra anxiety about paying for her equipment. It’s too much.”
Cruelly, even Callie’s favourite activities add to the burden. Dan adds: “Callie’s focus is really limited. We have Christmas lights up all year as she loves them. She also loves to focus on sensory lights.
“She loves drinking hot chocolate. These are small things but bring so much joy to her. We’re now worried we may no longer be able to provide them.”
The Aspleys have made savings. They moved in with Dan’s mum, don’t run a car and haven’t bought new clothes in months. Dan says: “The Government needs to do much more to help disabled families.”
