A Johnston mum whose young son has a rare muscle-wasting condition says there needs to be better financial support for parents of disabled children.

Three-year-old Jenson Schroeder has an undiagnosed form of muscular dystrophy, and mostly gets around by crawling or using his knees to shuffle along the floor.

The youngster, who cannot talk other than to say ‘Mum’, lives with his parents, Chloe Smith and Rikki Schroeder, in an inaccessible flat, where he cannot climb the stairs and which does not have enough room for some of his equipment.

Chloe has spoken out about her experiences of applying for financial support, as Muscular Dystrophy UK, the charity for people with muscle-wasting conditions, releases its ‘Below standard’ report highlighting a number of problems with the current benefits system.

“Every day is hard, and having a disabled child is tough. It’s like grieving for a child you know you will never have,” said Chloe, who had to drop working days due to Jenson’s needs. “I’m not only Jenson’s mum, but I’m his carer, too. I make sure he has what he needs and that he always knows he’s loved. I wouldn’t change one thing about Jenson, though. He is our perfect baby boy. We have tough days, but we always manage to get through them.”

When Jenson was diagnosed in 2018, it became clear Chloe and Rikki’s property was not suitable for his needs, and they decided to apply for local housing.

Initially, the family were allocated “bronze banding” – the lowest-priority category – which Chloe appealed. Eventually, late last year, they removed themselves from the waiting list, due to the stress it was causing.

In 2018, the family also applied for DLA (Disability Living Allowance) for Jenson. The application was eventually accepted, but the Department for Work and Pensions (DWP) wouldn’t consider the mobility component of the allowance until Jenson was three, as is its policy. When an application was submitted it took four months for a decision to come through, and even then Chloe was told it would not be backdated to the date she applied. Eventually, after making a complaint, this was reversed.

Chloe added:“I found applying for Disability Living Allowance incredibly difficult. The form is very detailed and specific, and I was really upset and stressed as it was just after Jenson’s diagnosis. I wasn’t offered any help completing the form.

“I have to say I think it’s ridiculous the mobility component wouldn’t be considered until Jenson is three. Jenson already had a diagnosis of a muscle-wasting condition with the possibility he may not walk until he’s a bit older, or even ever.

“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.”

Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, said:

“Financial support is crucial when you’re living with a muscle-wasting condition. But many people aren’t receiving the benefits they are entitled to and are struggling. Unclear forms, inaccurate assessments and unnecessary appeals all contribute to a stressful experience, affecting people’s mental health, quality of life and independence.

“Assessors must recognise that muscle-wasting conditions are rare, often progressive and lifelong. We call on the Government to adopt our recommendations and make much-needed improvements to the current system.”

• Muscular Dystrophy UK has a free helpline that supports people with muscle-wasting conditions, and has also produced a PIP guide to help people through the process. To find out more about these, the ‘Below standard’ report or the work of Muscular Dystrophy UK, visit: www.musculardystrophyuk.org