Mother says disabled son is practically 'on death row' as energy bills soar

There are many ways that people with disabilities will be disproportionately impacted by higher energy bills. ITV News' Social Affairs Correspondent Sarah Corker talks to those affected.

At his home in Enniskillen in Northern Ireland, Lee Martin, 37, is surrounded by the medical equipment that keeps him alive.

“This is life and death – everything in Lee’s life is electric and his life depends on getting a source of power,” his mother Caroline Wheeler told ITV News.

Mr Martin has diploid triploid mosaic, and is one of less than a hundred people in the world with the genetic condition.

He relies on an oxygen machine, nebuliser, and a specially adapted electric bed and toilet.

His household energy bills exceed £100 every single week and have already doubled this year.

Cutting back on the equipment he needs in order to breathe and to avoid seizures just isn’t an option. As temperatures drop, his mother fears for the worst.

Lee's mother tells ITV News his electrical equipment is 'a lifeline'

Pointing to his oxygen machine, Caroline Wheeler describes it as ‘Lee’s life-line".

"He’s sitting on death row," she adds.

Mr Martin was already living in poverty before inflation started spiralling to a 40-year high. His mother warns that if those with disabilities don’t get more financial assistance "there will be a lot of lives lost".

“My biggest worry is the prolonged winter months and having to keep Lee alive through that. I haven’t even thought that far, I can’t think that far ahead. We are supposed to be a society that helps those in need,” Mrs Wheeler said.

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Research by disability charities suggests that monthly bills and costs are almost £600 higher for people with disabilities, due to essential expenses like extra washing, electric wheelchair charging, powering oxygen machines, extra petrol, heating and dietary requirements.

The rising cost of living has exacerbated that financial pressure; it’s estimated that more than 600,000 disabled people in the UK have £10 or less per week to pay for food and other costs, according to the charity Leonard Cheshire.

Research by Mencap, shared with ITV News, shows that there are 150,000 people with a learning disability in England getting social care support, most of whom are living on £94.15 a week (minimum income guarantee) after care costs are levied.

For Chloe Tear, who lives near Leeds, being cold is not just inconvenient, it’s painful. The 24-year-old disability campaigner and blogger has cerebral palsy and is visually impaired.

'I just want to be an independent 24-year-old,' Chloe says

“I’m going to be faced with some really difficult choices this winter - not putting the heating on is going to make me in more pain and need more medication,” she said.

In four months, Ms Tear’s energy bills have doubled. She fears she won’t be able to afford to pay for the personal assistants who enable her to leave the house to work and see family and friends, which would leave her isolated.

"I just want to be an independent 24-year-old like everyone else. But I’m going to have to choose between my independence and my health this winter. In 2022, heating should not be a luxury,” Ms Tear told ITV News.

Millions of people living with disabilities are facing impossible choices. For the Smith family in Hull, it’s the cost of care that is the biggest concern.

Alistair Smith, 18, has learning disabilities, and relies on electrical equipment in the bathroom and bedroom, an electric wheelchair and uses a voice device to communicate.

The teenager, who has Angelman syndrome and epilepsy, is a Mencap Ambassador and told ITV News that he wants to be "treated like any other 18-year-old".

Alistair and his mother Jen

He’s already had to wait nine months to find a night-time carer and faces further delays for day care.

“There is a national shortage of people in the care industry. We’ve had carers leave because they couldn’t afford to pay their own household bills on a carer’s wages. It’s just not sustainable,” Alistair’s mother Jen Smith told ITV News.

Homecare workers are quitting the industry in increasing numbers due to insecure pay and the rising cost of living. Vacancy rates in the sector have hit a record high of 14.8%.

“Ultimately, if we can’t find enough carers, it’s Alistair who suffers the most as it means he’s stuck in the house, and that means we use more electricity that we can’t afford. It’s a vicious cycle,” Mrs Smith said.

There is some extra support on the way. From September 20, six million people on disability benefits will receive an additional £150 to help with the cost of living. A government spokesperson told ITV News that “this is part of the £37 billion package of support, which will see eight million low-income households receiving at least £1,200 of direct payments this year. We urge people to check they are getting all the help to which they are entitled”.