18 May 2023 , 23:01
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In Austerity Britain, the dilemma ‘heat or eat’ has become part of our national language. But for many disabled people during the cost-of-living crisis, the choice is even more stark – eat or breathe.
That’s the choice facing Sulaiman Khan, who has muscular dystrophy.
Electricity powers the medical equipment – including a ventilator – without which he would die.
“Sometimes it is hard to cope, it is scary, very isolating and frustrating,” he says.
We first spoke to Sulaiman, an ambassador for Muscular Dystrophy UK, as the cost-of-living crisis began to bite. Months later, like millions of disabled people, he has so far had just £150 help from the Government – despite charities estimating disabled people are paying £12,000 a year in extra costs.
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Sulaiman’s work as a business consultant doesn’t cover the soaring cost of his electricity. “I just don’t have a choice,” he says. “I can’t stop using my equipment, and I need to keep warm to control my pain.”
Morag Winston and her son, Harry (Sinari photography)Charity Scope’s latest report on the ‘disability price tag’ found disabled households now face, on average, extra costs of £975 per month.
The Government has awarded up to £900 to people on means-tested benefits during 2023 and 2024 to help with the cost of living. But disabled people were only offered a payment of £150, with another similar payment to come.
The charity says it is hearing from disabled people “going without food to power breathing equipment”.
On Monday, MPs will debate two petitions calling for disabled people to receive the same rate of support as other vulnerable groups.
The debate will be opened by Labour MP Marsha de Cordova.
“Financial support to date has been woefully inadequate, and the political choice of austerity has gutted the safety net of our social security system and led to an increase in the numbers of disabled people in poverty,” she told us. “Many are struggling to survive with extra costs of around £975 a month and the Government is failing them by choosing to ignore their plight even though they have been crying out for support.”
Trevor McLeese is one of 1.3 million electric wheelchair and mobility scooter users for whom a cost-of-living crisis has become a cost-of-moving crisis. Trevor, 63, is a retired accountant from Suffolk who has Becker muscular dystrophy. He uses an electric wheelchair, electric hoist, a machine to help him breathe at night, an electric bed and an electric toilet.
He has a defibrillator fitted in his heart and a machine which needs to be plugged in all the time to read the heart rate.
“I have two wheelchairs, so when one is charging I can use the other,” he says. “All my equipment uses electricity and is always plugged in. And we have to keep the heating on all the time.”
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Trevor, a volunteer with Muscular Dystrophy UK who lives with his mum, 93, has a small amount of savings he is watching disappear.
Aidan WoodHeartbreakingly, he says financial difficulties are ruining the final years of his life. “We have a shortened life and I want to live my best life,” he says, simply.
Morag Winston, 60, lives in Spalding, Lincs. She gave up her job as a staff nurse to care for her son Harry, 26, who was born with Down’s syndrome, and developed West syndrome at seven months old. He also has autism and epilepsy and spent weeks on a ventilator in hospital during Covid. “I wasn’t able to carry on as a staff nurse as Harry needs a lot of care,” Morag says.
“My biggest spend is diesel, dropping Harry to the day centre an hour away. When the fuel light comes on, I think, ‘can I even afford to fill up?’.”
An electric stairlift is another extra cost. “It’s a life saver, but it means our electricity is about £120 a month.” Last year the Winstons were one of 1,000 families the charity Sense said it was forced to help for the first time ever with a cost-of-living payment. “They also paid for a holiday last year,” Morag says. This year there won’t be a holiday, she adds.
Aidan Wood, 42, from Cardiff, has neurofibromatosis which led to his leg being amputated. He also has autism and other learning difficulties.
Aidan, a wheelchair user, says the charity Scope has helped support him through the last few months.
“It is a huge struggle financially, my gas and electricity bills have doubled,” he says.
Aidan adds that food prices have gone up significantly – even for the “rubbish, cheap food” which is all he can afford. “And I’m housebound because it is too expensive to go out.”
Because of his poor mental health and autism he struggles to sit in the dark. “I have to have the lights on. I take longer in the shower, and it takes me longer to cook. These are things other people don’t realise.
“The £150 payment we have received so far is just not enough.”
Trevor McLeese (Ian Vogler / Daily Mirror)Rachael Offley, 61, of Marlborough, Wilts, once managed care homes but is now reliant on council care visits.
She has had 24 operations in 20 years and has the autoimmune disease Sjogren’s.
She says the whole of last winter she only turned on the heating once – “when my daughter died, and visitors came to stay”.
When we spoke to the Department for Work and Pensions it said the Government is today announcing that “more than six million disabled people in the UK will receive their one-off £150 Disability Cost of Living Payment from 20 June.”
Minister for Disabled People, Health and Work, Tom Pursglove MP, said: “We know the cost of living has gone up for disabled people, which is why we are taking action to reduce the financial pressures they face.
“This £150 Disability Cost of Living Payment is on top of up to £900 that most low-income benefit claimants will also receive, helping ensure the most vulnerable in our society are protected from rising costs during this challenging period.”
The DWP says there will also be further payments of £300 for pensioners due later this year.
Louise Rubin from Scope says the two £150 payments being made to disabled people “haven’t touched the sides”.
She adds: “Parents are skipping meals so their children can eat. Others are going without food to power breathing equipment.”
The charity is so concerned it has launched a campaign to encourage disabled people to seek help.
“No parent should be going without food to feed their disabled son or daughter, be forced to switch off essential medical equipment, or confine their heating to one room in the house just to keep their children warm,” says Richard Kramer, chief executive of Sense.
“Sadly, this has become the new normal for so many disabled households across the country.
“The crisis is worsening and the Government isn’t doing enough to help.”