Disabled boy to lose benefits because he is 'too ill'

Dylan Kirsopp, seven, has cerebral palsy and epilepsy alongside a rare condition that leaves him requiring round-the-clock care.

His condition means he is fed through a drip. However, his parents, Mandy and John have now been told that his disability benefits will be axed because he is too poorly to qualify. They have been told they will lose Dylan's special wheelchair-adapted car as he is in hospital, not at his home in Tyne and Wear. Mandy told the Sunday Post: "It feels like we’re being punished because Dylan is too ill." Dylan was born prematurely at 23 weeks alongside his twin brother Murray. He weighed just over 1lb, and faced a tough struggle to survive. His brother made a good recovery, and while being autistic he is otherwise healthy. However Dylan has been diagnosed with intestinal pseudo-obstruction, meaning he cannot eat food and must be fed using a drip. For the past nine weeks doctors have struggled to find an alternative, as the current way they feed him leaves Dylan in pain. Mandy has quit her job in customer services to become a full-time carer for Dylan. She is at her son's bedside six days a week, with John stepping in to give her a one-night reprieve each week. However, the Department For Work and Pensions states in its rules that if a child is in hospital care for a period of 12 weeks or longer, their Disability Living Allowance will be axed. Mandy's Carer’s Allowance is also going to be cut, because the Department For Work and Pensions claim that it is the hospital and not the carer providing medical assistance for Dylan. Mandy added: "I think it’s really, really unfair. When you’re in the hospital 24 hours a day with your child, you are giving them as much if not more care than you would if you were at home. "Yes, the nurses are here to provide a medical service, but they’re not the ones who are sitting up all night cuddling him when he’s unwell." Mandy also carries out numerous other caring responsibilities for her son, including changing his nappies, his bed, and bathing him. The family estimate that once both Dylan's Disability Living Allowance and the Carer's Allowance are scrapped, half of the family's income will be lost, with them being forced to solely rely on dad John's part-time warehouse worker wage. The parents will also be left with no means of transport once Dylan's wheelchair-adapted car is taken from them. Mandy questioned the 12-week time limit for the Disability Living Allowance, saying no parent could or would leave their sick child after 12 weeks to try and find a job. She said there would be no one left to look after him, and blasted the DWP's stance as "absolutely ridiculous". Dylan is now moving 300 miles away for specialist treatment from Gateshead to Great Ormond Street Hospital in London. The family have had support form disability charity Contact a Family. Una Summerson, who works for the charity, said: "We want to see the unfair rules that remove vital DLA from disabled children like Dylan when they are in hospital to be urgently scrapped. "Most of the children affected by this rule are likely to have severe disabilities or complex health needs and the welfare system should be there for them and their families when they need it most." The Department for Work and Pensions said: "DLA provides a financial contribution towards severely disabled children's care or mobility needs. "Those needs are met in full by the NHS when a child is in hospital so stopping DLA prevents double provision. "This Government is committed to supporting disabled people, spending around £50 billion a year on disabled people and their services." Click here to find out more about Stop the DLA Takeaway campaign.
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