Mother of disabled child feels Government has turned its back on most vulnerable

Karen Tilley and her daughter Josselin Credit: PA Wire/PA Images

The mother of a disabled child whose energy bill almost quadrupled in a year said she feels the Government is “turning its back” on the most vulnerable families.

Karen Tilley had hoped for tailored financial help for people who have to run ventilators and other medical machinery as she told how her gas and electric payments have risen to about £470 per month, up from around £120 a year ago.

Her 16-year-old daughter Josselin – who is blind and deaf from birth – needs a ventilator at night due to a rare condition called Charge syndrome, with the set-up at their home in Wiltshire described by Ms Tilley as being like a “mini intensive care unit”.

Her husband Lee also requires a ventilator at night after he suffered a stroke having been in a coma after he fell ill with Covid two years ago.

Karen Tilley and her daughter Josselin Credit: Jacob King/PA

The 45-year-old was a builder but can no longer work, meaning Ms Tilley has to do full-time hours as a carer and housekeeper in order to support the family.

She said seeing her energy bills rise has been “worrying” and detailed the cutbacks her family has had to make.

She told the PA news agency: “We’ve had our house a lot colder than usual this year and we’ve not been using things like the tumble drier and trying to use the slow cooker, and not putting the oven on for just one thing. We’ve never made cutbacks as much as this before.”

After seeing the Budget highlights on Wednesday, she said she was left “disappointed” at the announcements.

Shesaid: “There hasn’t been anything to help families like ours at all. I think that they just have got no awareness of families like ours. They haven’t really given any consideration to people living with serious medical conditions.”

Karen said she was ‘disappointed’ by measures in the Budget Credit: Jacob King/PA

She said the energy price guarantee will make little difference to her family’s finances and the announcements around getting disabled people into work do not apply to her daughter.

She said: “Josselin can’t walk, talk, read or write. So, they’re (the Government) are not considering the really disabled people who will never, ever work in their lifetime and disability benefits will always be their only income.

“They’re just really turning their backs on those people who are the most vulnerable and most disabled.”

With the news that her daughter requires heart surgery in six weeks, Ms Tilley said it means she will not be able to work while Josselin recovers.

She said: “It’s going to be tough times ahead for us really and we’ll have the same costs to pay.”

Karen and Josselin go for a walk with Stormzy Credit: Jacob King/PA

A number of charities, including Guide Dogs which matched Josselin with her buddy dog Stormzy, had called on Chancellor Jeremy Hunt to boost support by £15 per month for families with disabled children who are eligible to claim universal credit and child tax credit, amid the ongoing cost-of-living crisis.

Ms Tilley said she had seen comments on social media referring to such benefits as “handouts”, but said most people are not aware of the realities for disabled families.

She said: “DLA (disability living allowance) is for children under 16, where at least one parent – or there might only be one parent – has had to give up their job to look after their disabled child, so it really isn’t a massive amount of money at all.

“It’s something but it certainly not like a massive handout – you can’t live a lavish lifestyle on disability benefits at all.”

She said while the allowance helps towards extras like washing, light and heating, she feels the Government is “not acknowledging the people that are having to use medical machines that consume a lot of energy and it’s a different cost to what other people with disabilities would have”.