Cry for help… Disabled families face dire challenges
Susanne Crosby has no choice but to pay her soaring energy bills, like hundreds of thousands of other households struggling to care for a disabled person such as her daughter Mia. After keeping the power on, Susanne has just enough cash left over to eat a yoghurt for lunch.
So today the Daily Express is launching a crusade to End the Disability Bills Crisis, calling on the Government and energy firms to step in with immediate targeted relief such as a £200 grant for hard-hit families, as called for by campaigners.
Research by the charity Scope reveals the 14 million disabled people in the UK already face extra costs of £583 a month for higher energy bills and expensive equipment.
Susanne, 55, and husband Andy, 58, have seen their bills soar as they battle to ensure that Mia, 16, receives the care she needs with the help of power-hungry medical aids.
Having pared back spending everywhere else, Susanne told the Express she can often afford just a pot of yoghurt for a midday meal as she prioritises Mia’s energy needs.
Mia has Rett Syndrome, a rare neurological condition which leaves her unable to walk. She relies on a ceiling hoist, stairlift and an outside platform lift among the ten essential pieces of equipment plugged in at their Brighton home.
Switching them off to save money is not an option for the family – nor for countless others like them.
Households caring for a disabled person also face higher costs caused by extra washing, charging wheelchairs, powering oxygen machines and many other vital services.
Around 900,000 people with disabilities are said to be in fuel poverty. If typical energy bills rise to £3,000 in October as feared, Scope said it could hit 2.1 million.
Challenges… 14 million disabled people in the UK already face extra costs of £583 a month
Susanne said she was “astonished” to see her energy bill shoot up from £100 a month to £157. Even the monthly service charge for Mia’s platform lift has increased from £32 to £40: “We don’t have any money spare.
“How do we know it’s going to get better? It certainly doesn’t feel like it at the minute and we just keep getting squeezed and squeezed. Sometimes I just have yoghurt for lunch, rather than something fancy, because [food is] the only place we can make cuts.
“We just feel invisible, and we feel like we’re being ignored. It’s hard enough anyway, having to live like this. It’s just another blow when you already feel like you’re on the floor and on your knees; another kick which just knocks the stuffing out of you.
“I can’t be there for Mia unless I’m looking after myself but it’s so increasingly difficult to prioritise looking after yourself when you are so stressed about being able to afford the bare necessities.”
Full-time carer Susanne receives £69.70 a week in Carer’s Allowance – an “insulting” 78p an hour for a 90-hour week when Mia is not at school – while husband Andy works as a manager at a brain charity. She said: “Is this really what we’re worth? It just feels like they want people like us to go away.”
The charity Contact, which helps families care for disabled children, found that 40 per cent of households fear higher energy bills might worsen their child’s condition. Some 37 per cent of parents were already making difficult choices about cutting back on food even before the recent spike in costs.
Furthermore, a survey by Scope this year revealed more than four million households with a disabled person spend more than £1,500 a year on energy.
Of these, 790,000 have to find more than £2,500 – whereas the typical British household bill is around £1,200.
Costs are set to rocket still further when the national energy price cap is increased. The Office for Budget Responsibility says analysis suggests bills will increase by another 40 per cent in October. The Express is urging energy companies and the Government to step in.
Campaigners are calling for the £200 energy rebate announced in February to be turned into a non-repayable grant for disabled households.
They also want better access to the Warm Home Discount Scheme which currently excludes around 210,000 people on disability benefits from applying. Disability Living Allowance, Personal Independence Payments and Attendance Allowance claimants will no longer benefit.
Other demands include an uprated Carer’s Allowance and for disability benefits to rise in line with inflation, plus the introduction of social tariffs for disabled people so they pay no more than a supplier’s cheapest plan.
Boris Johnson has promised to “grow and strengthen the economy and help ease the cost of living” but the Prime Minister warned in the Queen’s Speech the Government cannot “completely shield” people from spiralling costs. No immediate extra help was announced.
The Department for Business said the Government understands “some households with a disability or medical condition have higher than average energy costs”, adding that “Clinical Commissioning Groups are best placed to support their local populace”.
But Helen Walker, chief executive of campaigning body Carers UK, said: “We are seeing unprecedented levels of stress and financial worries piled on unpaid carers. Many were already struggling.
Now 45 per cent of carers are unable to manage their monthly expenses. Many are dipping into savings, using credit cards, being pushed into debt and cutting back on essentials to keep the person they care for warm and healthy.
“There is an urgent need for targeted support for unpaid carers now. Thousands more are being pushed into poverty.”
Amanda Batten, chief executive of Contact, said: “There needs to be targeted support urgently, with benefits uprated in line with current inflation, the energy rebate being made a non-repayable grant and greater access to the warm home discount.”
Lloyd Russell-Moyle, Labour MP for Brighton Kemptown, said Susanne and Mia’s story as told to the Express “will be shocking for many readers, but for me it is not.
“Disabled people face a double whammy: increasing bills and exclusions from support.
“Nobody should be living on just yoghurt to save money. Families like Susanne and Mia should not be worried about turning off essential equipment because they can’t afford it.”
● Energy is up from £100 a month to £157, and it is predicted to rise by another £50 in September, so it has doubled in seven months.
● The outside platform lift service charge is up from £32 to £40 a month.
● Water has more than doubled in four years because of lots of washing for Mia – it’s currently £59.70 a month and it used to be £28.83.
● Food is up by at least £20 a week – they used to spend £100. Now it’s around £120.
Sign Contact’s open letter to the chancellor and energy minister calling for more support for disabled people.
Donate to disability charities such as Scope UK, Together for Short Lives, Contact and Disability Rights UK.
Write to your MP to urge the Government to provide greater financial support for disabled people living in or facing fuel poverty.
Tweet your MP asking them for their support.
Sign the “Provide an energy grant to people with a disability or serious medical condition” petition here.
COMMENT BY JAMES TAYLOR
Disabled people are right in the middle of the current cost-of-living storm.
The Queen’s Speech was a chance for Government to do something to address this but failed to do so. We need to see urgent action now otherwise many disabled will be pushed into poverty.
Before this current crisis, on average, they faced extra costs that add up to £583 a month and are already more likely to live in poverty.
With inflation likely to hit 10 per cent, energy bills rising and food prices ratcheting up, it’s way past disabled people being able to cut back more.
Many face the terrifying reality of not being able to afford the basics. For example, Jignesh Vaidya is paralysed from the waist down and gets cold easily.
He holds down two jobs but already has been forced to cut all expenditure for him and his young family right back to the bone. It’s likely that for people like him it will get worse before it gets better.
In 2022 this should be unthinkable and yet this reality is unfolding – and the Government is doing very little to stop it.
We’ve seen a huge rise in calls to our helpline with people worried about their energy bills. For many there is no choice – they need a constant supply of energy for their hoists, beds, breathing equipment, powered chairs and monitors.
The Queen’s Speech was an opportunity to step up and help. It didn’t happen.
We’re seeing a real-terms cut to disability benefits because rates significantly lag behind inflation. Correcting this would be a straightforward fix. The Government has said it will do this next April but what are disabled people supposed to do for the next 12 months?
Giving more money to councils – to help with essentials – may provide some relief, but like the rise in National Insurance thresholds and a cut to fuel duty, it’s not targeted at disabled people.
The gung-ho approach to shifting the disabled on to Universal Credit, will put part of the money disabled people currently receive at risk.
Life costs more if you’re disabled but what’s on offer right now doesn’t touch the sides of these costs.
- James Taylor is Director of Strategy at disability equality charity Scope
COMMENT BY CHLOE SMITH MP
We are currently living through unprecedented global price rises – like the rest of the world – and I know that for families like Susanne and her daughter Mia this is causing financial and emotional stress.
We are taking decisive action to help carers like Susanne and husband Andy, spending more than £22billion this financial year to support them.
We are providing most households with up to £350 towards their energy costs this year, while our £1billion household support fund is providing extra help to the vulnerable to pay for the cost of essentials.
Unpaid carers like Susanne play a pivotal role across the country and it is abundantly clear how important they are to so many people, including Mia.
They deserve to be supported financially, along with their health, wellbeing and job ambitions. We are spending record amounts, with £800 more a year through the Carer’s Allowance compared to 2010.
Some carers can also receive an additional £2,000 through Universal Credit and may be eligible for further support through the benefits system.
There is help out there and I would urge people like Susanne to make sure they are receiving all the benefits to which they are entitled. By claiming these, people can also get access to other help, including with transport, broadband and prescription costs.
Aside from ensuring disabled people and their carers are getting financial support, I also have an important role in supporting the ambitions of disabled people who want – and can – work. We are helping jobseekers find, retain and progress in fulfilling roles.
We offer specialist programmes, such as Access to Work, which pays for the adjustments people might need to do a job, and this is paired with specialist, personal support from our
Work Coaches and Disability Employment advisers. By helping people into work, and supporting progress, we can help lift earnings too.
As the Prime Minister has said, we cannot shield people from all of the impacts of global pressures, but we are helping where we can to ease the financial difficulties people with disabilities and long-term illness are facing and be more resilient to the changes in the cost of living.
- Chloe Smith is Minister for Disabled People Health and Work