For Amrit Dhaliwal, being cold is not just uncomfortable – it’s painful. She has a connective tissue disorder and needs to stay warm to keep her joints mobile and maintain her circulation. For six months of the year, Dhaliwal has the heating on for roughly ten hours a day.
“When my family think the house is hot, my hands and feet are blue,” she tells Spotlight. “The thought of energy bills going up to £500 per month really frightens me.”
Heating is not the only additional expense she faces. Due to glaucoma, the 49-year-old is also blind, so she frequently travels as a passenger by car rather than take public transport. The specialist adaptive equipment in her kitchen requires electricity, and the healthy diet of fresh fruit and vegetables she maintains to manage her joint pain costs money, too.
As autumn approaches, rising energy and food prices mean Dhaliwal, her husband and their two children are already planning to cut back on non-essentials. Travelling to see extended family and attend religious events will be out. School trips won’t be possible, and the family won’t be buying takeaways or even snacks. Borrowing money is a last resort, which Dhaliwal would rather avoid as it “is even more of a burden”. Even her teenager’s university plans are uncertain. “It’s really upsetting for me that because of my situation they might not be able to go, or do the course that they want,” she says.
Disabled people across the UK are facing extremely high living costs. According to 2019 research from the charity Scope, additional expenses for necessities like charging mobility scooters, petrol, heating and dietary requirements average £583 per month and go up to more than £1,000 for one in five people with disabilities. These figures are likely to be much higher now, with inflation already at 10.1 per cent.
Dhaliwal – who holds a postgraduate psychology degree – says she has been looking for paid employment for the past five years but has gotten nowhere. Her story is fairly typical: the employment rate among disabled people is far lower than the general population – 52.7 per cent were in work in 2021, compared to 81 per cent of those without disabilities. Employers are often reluctant to make necessary workplace adjustments to accommodate employees with disabilities. Many are completely unaware of the government’s Access to Work programme, says Dhaliwal, which offers grants to support someone with a disability in the workplace. Her husband is the sole provider for her and their two children.
The result is that disabled people are trapped in a vicious cycle that pushes them into poverty. Food bank network The Trussell Trust estimates that more than half of all food bank users are disabled. Meanwhile, the charity Leonard Cheshire’s recent cost-of-living survey found that 600,000 disabled people had £10 or less to live on per week.
Benefits have been stripped back since the David Cameron era, with £14bn taken out of the welfare system since 2010, according to the New Economics Foundation think tank. The Personal Independence Payment (PIP) – formerly the Disability Living Allowance – which is intended to help cover disabled people’s extra living costs can be as little as £24.45 per week and goes up to £156.90. It is not means-tested but the amount that people receive depends on their mobility and daily living needs. For those who face extra living costs of more than £1,000 per month, even the highest benefit rate doesn’t cover it.
The government has offered some one-off funds to help people with the cost of living – this includes a £150 payment for anyone claiming disability benefits and £150 off energy bills via the Warm Home Discount Scheme. However, the rules around the latter have changed, so that now only those on a “low income” or on means-tested benefits such as Universal Credit will receive it, excluding 290,000 “better-off” disabled people.
“This is the government giving with one hand, but taking away with the other,” says Stephen Timms, Labour MP and chair of the work and pensions committee, which is set up to scrutinise the Department for Work and Pensions (DWP). “What we need is an adequate social security system, which is properly uprated, rather than ad-hoc, one-off payments.”
Benefit rates are clearly not keeping up with the rising cost of living. The benefit cap – which sets a maximum limit on how much a household can receive in a year – has been frozen since 2016 and is lower than when it was first introduced in 2013 (though households receiving PIP or other disability benefits are exempt). The “uprating” system – which is meant to raise benefits in line with inflation – takes place in April but is based on inflation rates from the previous September, meaning, in this volatile climate, that they are insufficient by the time they are enacted. According to a new report by the investment bank Citi, inflation could be as high as 18.6 per cent in January 2023.
But regardless of how much claimants receive, qualifying in the first place is a significant barrier. Applications for PIP are judged on a “health assessment” and can be refused, or claimants offered less than what they applied for. People can appeal the decision made by the DWP, and the department maintains that only five per cent of PIP decisions end up being overturned. Research from Scope, however, shows that, of those who did appeal between July 2019 and 2021, nearly three-quarters won their case.
“This indicates that something is going badly wrong,” says Timms. “For whatever reason, the people working on behalf of DWP are coming to the wrong decisions.” His committee will be publishing an inquiry into the health assessment process this autumn.
Gemma Hope, director of policy at Leonard Cheshire, says that the scrutiny people face when applying for benefits has a deeper impact than mere finances.
“Having to prove that you are experiencing what you’re experiencing and not being believed has completely eroded trust,” she says. “Then the appeals process is very emotionally draining. People dread getting the brown envelope from DWP through their letterbox.”
Many also fear losing access to the benefits they already have. Employment Support Allowance (ESA) helps people who are out of work due to health reasons or disability. However, there are restrictions on repeat claims and if someone is found to be “capable for work” they will be refused. Dhaliwal says that she would be reticent to accept a temporary job for this reason, for fear that it would be incredibly difficult to get back onto ESA again once the contract finished. “It just feels like another trap,” she says. “It’s another invisible barrier to getting a job.”
As inflation rises, disabled people will continue to be pushed into destitution unless more targeted support is introduced. A DWP spokesperson tells Spotlight that the department “supports millions of people with disabilities each year with a strong financial support system” and that it “always strives to provide a supportive and compassionate service”. They add that they “urge people to check they are getting all the help to which they are entitled”.
The government was due to look at updated figures around extra daily costs faced by disabled people in its National Disability Strategy but this work has been put on hold as the strategy has been ruled unlawful by the High Court due to an inadequate consultation process. This is symbolic of the wider issue at play: a lack of engagement with disabled people and a reluctance to use their input to create services and policies that are suited to their needs. The DWP is currently seeking an appeal to the decision.
Charities and MPs are calling for a drastic gear change. They want regular uprating of benefits to match rates of inflation throughout the year, reversal of plans to cut disabled people off from individual funds, new measures such as a social tariff on energy bills, and crucially, the government to co-design future benefit support with disabled people.
“People can’t afford to go out,” says Hope. “They can’t afford to go to doctors’ appointments or physiotherapy, so it’s making their health worse. It’s making people really socially isolated. And they’re petrified of what’s going to happen this winter.”