05 March 2024 , 07:00
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A mum whose disabled son’s benefits were slashed when he stopped being classed as a child said she is “literally terrified” how she will cope.
Samantha Tolmie is pleading with Chancellor Jeremy Hunt to provide more support for families with disabled children who are left worse off when their child benefits end. Her son Lewis was diagnosed with a rare terminal disorder, Batten disease, as a baby and requires 24/7 care.
Until now, he received £202 per week, made up of child tax credits of around £178 and child benefit of £24 per week, according to Contact, a charity working with families with disabled children. But after turning 20 at the end of February, Lewis is no longer eligible and must instead apply for Universal Credit.
Contact said it means the family's benefit income for Lewis is set to be cut by around a quarter to £157 a week. Child Tax Credits usually stop after a child turns 16 but can continue until 20 years old, as in Lewis’s case, in certain circumstances.
Ms Tolmie, 54, who lives in Doncaster, has also seen her housing benefit and council tax benefit reduced as Lewis is now classed as a non-dependent living in home. The mum, who cannot work as she cares full time for her son, said she pays around £500 a month for electricity as Lewis needs a range of life support including two ventilators, an oxygen concentrator and two feeding pumps which all must be plugged in and running at all times.
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'Everyone who meets Lewis can see his sparkly personality,' his mum Samantha says
Samantha said having their Child Tax Credits ended, which is their largest benefit income, is 'truly frightening'In a letter to Mr Hunt ahead of his Budget on Wednesday, Ms Tolmie has called for an “energy social tariff” for families who are reliant on life-saving electrical equipment. She has also urged him to ensure families with disabled children are not worse off under Universal Credit and for him to organise a series of cost-of-living payments for disabled households.
Around 40% of families with disabled children are worse off since claiming Universal Credit, according to Contact’s 2021 survey of almost 3,000 UK families with disabled children.
“I never get a break from being Lewis’s 24/7 mummy to my son – like most mums, my children are everything and I have given my life over to keeping Lewis happy and safe for as long as he chooses to be here,” Ms Tolmie said. “Everyone who meets Lewis can see his sparkly personality and how much he wants to be here. That is why I do what I do – like all mums.”
She said having their Child Tax Credits ended, which is their largest benefit income, is “truly frightening”, adding: “I am a single parent and Lewis has a terminal disease. It’s not possible for me to go out and get a job as I am a carer 24/7. “There is nowhere else we can get money from. I am literally terrified and too afraid to think about how we are going to cope financially when our financial support drops... when we are due to move over to Universal Credit.”
Ms Tolmie added that the system “is unbearably complicated” for young disabled people in education transferring over to Universal Credit. “Lewis is clearly unable to ever work and yet we have to go through processes including an interview for fitness to work,” she said. “It feels cruel for families already under enormous pressure to try to work out how to claim these benefits, and to try and pull together all the information and ‘evidence’ required.”
A Government spokesman said: “We know the challenges families are facing, which is why we are increasing disability benefits by 6.7% in April and are providing a £104 billion support package – worth an average £3,700 per household, including cost of living payments. We have also delivered on our promise to halve inflation so that everyone’s money goes further.”