Mum's desperate plea as she says 'knowing your child will die is hard enough'

More than six in 10 parent-carers are having to give up work or reduce their hours to look after their disabled children - read Becci's story below as charity Contact calls for more help

More than six in 10 parent-carers are having to give up work or reduce their hours to look after their disabled children, research shows today.

Parents are losing on average £21,174 of their family income and are left with impossible choices such as turning off their freezer to keep their child's oxygen machine plugged in, the charity Contact found. Campaigners are making a plea for the challenges faced by families with disabled children to be urgently considered in the government’s child poverty strategy.

Contact’s study found some 43% of families with disabled children have gone without heating, while 32% of parent carers have gone without food for themselves. And half of families have got into debt or borrowed money in the last 12 months to pay for basics.

Long waiting lists for support mean parents are being forced to pay for vital therapies, diagnosis and special equipment. Almost one in 10 families have a child at home because they didn’t get a suitable school place this September, which Contact said costs an extra £27 a week. On average parents are paying an extra £322 a month - £3,864 each year - due to their child’s condition.

Separate research by the Child Poverty Action Group has today warned that families with two children and both parents working full time on the national minimum wage (NMW) are £138 per week short of what they need to afford the basics. It said a combination of the two-child limit and gaps in help with childcare costs has left huge income shortfalls for working families with more than two children. It found that a lone parent with three children on the NMW can only cover 61% of the family’s costs and a couple with three children can meet just 70%.

Labour has resisted widespread calls to scrap the Tory two-child benefit limit but said it will pull “all the levers” at their disposal as it develops its child poverty strategy. Contact is calling on ministers to recognise the unique costs coupled with employment challenges that families with disabled children experience in the strategy. The charity is demanding an energy social tariff for critically ill disabled children, as well as a benefit check for every parent carer in the UK.

Anna Bird, chief executive of Contact, said: “Disabled children live in some of the poorest households in the UK. Many are faced with impossible financial choices every day – whether they can afford to attend their child’s hospital appointment or whether they need to turn off the freezer to save electricity for their child’s oxygen concentrator.

“Life has undoubtedly become more expensive and families with disabled children are paying an additional price for delays in assessments, lack of therapies and children at home because there are no suitable school places."

A Government spokesman said: “No child should be in poverty – that’s why our Ministerial Taskforce is developing an ambitious strategy to give all children the best start in life. We’re rolling out free breakfast clubs in all primary schools in England, supporting 700,000 of the poorest families with children by introducing a Fair Repayment Rate on Universal Credit deductions and we continue to support disabled children through the Disability Living Allowance."

::: Contact surveyed 4,262 parents who have a disabled child/children between the ages of 0-25 online from August 28 to September 30.

'Knowing your child will die before they’re a teen is hard enough, I'm tired of fighting'

A teacher who had to give up her job to care for her disabled son said she is “tired of fighting” the authorities for support.

Becci Tobin, from Dudley, West Mids, cares full time for her five-year-old son Keir, who has a rare genetic condition, GABRB3, which causes seizures and complex health needs.

She said she has been battling for two years to get extra support to care for her son and relies on her mum to help out with caring for Keir. “Knowing your child is going to die before they’re a teenager is hard enough,” she told the Mirror.

The family was recently granted two hours help a week through the social care system after Becci repeatedly complained and was “banging on doors constantly”. But the desperate mum, who sleeps downstairs with her son so she can administer him medicine throughout the night, says Keir needs help from the NHS.

Becci, who went from being a head of a department at a school and now works nine hours a week at a performing arts group, said the help offered is for social support and that the family need someone “who is trained to use the pump, the nebuliser, the suction, the peg feeding, deal with seizures, all that kind of stuff”. Despite her social worker admitting Keir needs this sort of help, she said the family has been constantly passed between the NHS and social services, with nobody willing to pay for extra support.

“On top of the stress of not having as much money, having to give all my time to care for Keir, not sleeping with husband and sleeping downstairs, then to think I better now get my laptop out, send another email, make another phone call, try to get someone to help me, contest this, go to the Ombundsman about that," she said. “It’s really emotionally draining and knackering.”

She says the checklist to qualify for continuing care, where care continues outside a hospital setting, is “just so wrong and not fit for purpose”. “I think it's ridiculous that Keir doesn't qualify. He has three seizures a day. You need four a night for it to qualify for one of the domains," she said.

“If they could just go: ‘Do you know what, we’ll give you 10 hours a week’, just to know that I'd have someone who could help, or that I could rely upon. What I'd love most of all is just someone to sleep with Keir one night a week.

“That would just be heaven, because then I could sleep upstairs one night a week, recharge, and then I'd be up for doing it again. But no one wants to pay and that's the frustrating thing.”