Chloe Smith, whose three-year-old son, Jenson, has an undiagnosed muscle-wasting condition, knows how difficult the current welfare system can be.
“Jenson is a joy to be around. He loves being outdoors and playing on the swings in his garden or visiting the beach and getting messy. He is our perfect baby boy, and I wouldn’t change one thing about him. But every day is a challenge. I’m not only Jenson’s mum, I’m his carer, too.
“Jenson cannot talk other than to say ‘Mum’, and until very recently he was unable to walk. He mostly gets around by crawling or using his knees to shuffle along the floor. Jenson is…entirely dependent on myself and his dad, Rikki.
“I dropped days at work to care for him. Inevitably, this came with financial challenges, so I applied for Disability Living Allowance.”
Chloe sought advice on applying for financial support, but still found the process difficult.
“The form is very detailed and specific, and I was really upset and stressed as it was just after Jenson’s diagnosis.”
“At that time, you have enough to deal with – you don’t need the additional pressure.”
At the time of applying for financial support, Jenson was less than three years old. This meant Chloe could not apply for the mobility component of the Disability Living Allowance, despite being told her son would not walk until he’s a bit older, or even ever.
Chloe does not qualify for Carer’s Allowance either, which means she misses out on additional financial support despite caring for Jenson 35-plus hours a week.
“On top of that, we currently live in a first-storey flat and have to carry Jenson up the stairs to get to it,” says Chloe. “There’s no parking, and it’s not big enough for all of Jenson’s equipment. We have to keep his walker at his grandmother’s house, six miles away.
“When we applied for local housing, we were placed as ‘bronze banding’, which is the lowest-priority category. We have now removed ourselves from the register because of the stress.
“It’s great that Muscular Dystrophy UK is campaigning on this, because change is needed.”
“Many people generally need financial support to assist the needs to their disabled children, perhaps from dropping hours in work or buying equipment they need. Everyone is different, and I feel like there needs to be less judgement and a more sympathetic attitude towards people who need support.”