Despite suffering from a central nerve function disease which makes her joints worse in the colder weather, Vania Burnell refuses to turn the heating on. The 52-year-old is so frightened of a huge bill that she tries to find other ways to keep warm.
Vania, who lives in Greater Manchester with her partner Darren and their son, cannot walk unaided. Relying on a four-wheeled rollator to walk, she depends on Darren - who is her full-time carer - to drive her in their mobility car if she wants to go anywhere. But because petrol prices have shot up, she hardly leaves the house, the MEN reports.
The old Victorian house where they spend most of their time is cold and dark because, like many, they are doing all they can to keep their energy bills down. She said: "We sit in the dark. We have the TV on, but we don't tend to keep any lights on anymore."
Born in Bristol, Vania hasn't seen her mum, who lives in Weston-super-Mare, since before the pandemic because she cannot afford the trip down south. Plans to visit over Christmas were postponed when energy costs increased, but since interest rates skyrocketed, her mortgage repayments have risen by around £100 a month, leaving them with just £57 a week after bills are paid.
Now, instead of planning to visit her poorly mother in the new year, Vania and her family face the prospect of using a foodbank for the first time in their lives. "I don't know how we're going to manage. It frightens us," she said.
As a disabled person, Vania's stark situation is far from unique. Earlier this year, the Disabled People's Panel carried out a survey in Greater Manchester – the biggest of its kind in the UK with around 1,600 responses.
Despite taking place over the summer, the results revealed a bleak reality for disabled people - one feared to have worsened over the cold winter. At the time, one in five disabled people said they did not have enough money to buy the basic things they need to live and half said they were eating less.
Seven out of 10 were already having to use less heat and light despite the same proportion having to use more gas and electric due to their disability. Before the current cost of living crisis, disability charity Scope estimated that disabled people faced extra costs of £583 per month on average and for a quarter of families with disabled children, it amounts to more than £1,000.
They say that higher energy bills are making the situation far worse - even with government schemes in places - with nine in 10 worried about bills this winter. Higher heating requirements, specific food needs and powered wheelchairs can make living as a disabled person more expensive so inflation hits harder.
For Hannah, who has cerebral palsy, the extra costs are related the 24-hour care she requires and the physiotherapy which the NHS does not provide. The 37-year-old who lives in Golborne, says the contributions towards her care package - together with the regular physiotherapy sessions - cost £200 a week.
But she says these essential expenses leave her with no disposable income. "None of it I could live without," she explained. "I can't function without it – I would die without it."
The creative writing student is also feeling the knock-on effects of the cost of the living crisis because finding care staff is becoming increasingly difficult. Having recruited her own staff for 17 years, she has seen many carers leave the sector recently and now she cannot even rely on agencies to fill the gaps.
Sometimes her family has to step in to look after her at the last minute and on one occasion, her mum was left to care for her alone for three days in a row. Last month, the government said it would provide up to £7.5bn over the next two years to support social care services and address workforce pressures.
However, local campaigners say the government is not funding social care enough, relying on council tax increases which will hit poorer areas harder. After the autumn statement, the Greater Manchester Disabled People's Panel met with a government minister to share their concerns about the budget.
They told the Minister for Disabled People that the announced increase in benefits would be 'insufficient' and cannot wait until the spring as planned. Waiting, they warned, would risk disabled people dying unnecessarily.
They also explained that cuts to public spending will have a disproportionate impact on disabled people who require public services to live equal lives. And they offered to work with the government to support people who need more energy to meet their medical needs and on a new social energy tariff.
In a statement sent on behalf of the Disabled People's Panel and the Greater Manchester Coalition of Disabled People, the organisations said that more money must be found to prevent disabled people sinking into further poverty. Responding, the government said many disabled people across the country have recently received extra payments to help with the cost of living crisis.
A spokesperson said: "This government is committed to protecting the most vulnerable and we recognise disabled people face additional costs. As part of a £37bn package of support, we are supporting six million people with a disability or health condition with an extra £150 payment this year while millions of low-income households will be receiving at least £1,200 of direct help this year, including £400 towards energy costs.
"Our immediate support also includes our Energy Price Guarantee, saving around £900 for a typical household over winter and our Household Support Fund is helping people with essential costs. In addition, disability benefits will be increased in line with inflation for 2023-24 and we are making £900 of new Cost of Living payments to those on means-tested benefits next year, with a further £150 Disability Cost of Living payment to those on disability benefits."
