Cost of living: Disabled people are falling through the cracks

Before the cost-of-living crisis, before the invasion of Ukraine drove up energy bills, before even the pandemic, disabled households needed to find an extra £645 per month to maintain the same living standards as non-disabled households, according to a report by disability charity Scope. In 2023, that figure has ballooned to £975.

“That’s an extra almost £1,000 of additional cost for living with a disability. That obviously is an enormous amount that is very hard for people to cover,” says Allan Faulds, senior policy officer of the Health and Social Care Alliance Scotland.

That additional cost might cover mobility aids, it might cover home adaptations, it might cover higher bills for running medical equipment at home. It is over and above the price increases being felt by all households across the UK.

The knock-on impact is that disabled people are going without basics. A Glasgow Disability Alliance (GDA) survey of its female members found almost half (49 per cent) had skipped meals, 70 per cent had cut back on heating their homes, and 37 per cent had reduced care packages. And it’s not just the immediate impact that is a concern.

We have never been a priority for the Scottish Government

One GDA member said: “It is hard to explain to friends that although we are all affected right now, the costs regarding disability are catastrophic. It’s not just food and energy costs that we face. We can be housebound and made much more disabled by the ongoing financial losses. Our equipment and care costs are vital to being engaged in life.”

In a rallying call to the Scottish Government earlier this year, the GDA – alongside other disabled people’s organisations – said disabled people had “repeatedly fallen through cracks” and as a result were “dying in higher numbers”.

The letter, addressed directly to First Minister Humza Yousaf, continued: “Despite the fact that disabled people have always been a large part of Scotland’s people, we have never been a priority for the Scottish Government. It is fair to say that successive policies have not only failed to tackle disabled people’s poverty, inequalities and poorer life outcomes, but have widened these.”

The Scottish Government’s own figures prove that poverty among disabled people has remained stubbornly high for a number of years. The statistics for 2019-22 put the poverty rate for disabled households at 24 per cent, roughly the same as it’s been for a decade. Moreover, just over half of people living in poverty in Scotland are disabled or live in a household with a disabled person.

People are reporting to us basically staying in bed all day and not feeling life is worthwhile

Those working in the sector anticipate those figures will have got worse as the cost-of-living crisis has continued. Not only will it have pushed people into poverty, it will have increased the depth of poverty too.

Bill Scott, senior policy adviser at Inclusion Scotland, explains: “Destitution has increased. Destitution is going without a roof over your head or food to eat or energy to heat your home with or adequate clothing. The Joseph Rowntree Foundation did a very wide study on destitution earlier this year and the figures coming back from that are that 3.8 million people [in the UK] experienced destitution in 2022, including around a million children. Disabled people were amongst those at the very highest risk of destitution – 63 per cent of all those responding to the destitution survey reported having a disability.”

While Inclusion Scotland is “not a frontline service provider,” Scott reveals that he often hears from people “who are suicidal because of their inability to heat their home or eat”. He says people have had to resort to microwave meals for months on end because “they just can’t afford the energy cost of switching on a cooker or they don’t use a fridge”.

Then there is the issue of being unable to turn the heating on. “People are reporting to us basically staying in bed all day and not feeling life is worthwhile at all because there’s nothing to look forward to, day after day, during winter,” Scott says.

“People have missed doctor’s appointments because their house has been so cold – they may have rheumatoid arthritis, they stiffen up and just couldn’t make the journey to the doctors. Health is jeopardised in several ways because even when they’re ill, they’re not necessarily able to access the healthcare that they need.”

There have been efforts by both governments to support struggling households throughout this period. The UK Government paid out a series of cost-of-living payments linked to other benefits, including Universal Credit and personal independence payments (PIP).

“Those kinds of payments have definitely been a help,” says Faulds. “But those haven’t necessarily been available to all disabled people. A lot of disabled people are in work, many of whom will be earning enough that they don’t qualify for the kind of benefits that would lead to them getting that £300 payment. They will have got, earlier in the year, the £150 disability payment. But that’s not going anywhere near far enough to deal with the additional costs people are facing.”

And the Scottish Government has continued to provide the Scottish Child Payment, which Scott says has meant Scotland has seen a smaller rise in poverty than elsewhere in the UK. “It has blunted the edge of the worst of the cost-of-living crisis for families with children, but a lot of disabled people are single or are older couples who obviously don’t benefit from the Scottish Child Payment. They’re the ones that are probably facing the toughest winter.”

One area the Scottish Government could look to improve on, Scott says, is employability support for disabled people. In 2022, the estimated disability employment gap was 32 percentage points. “If we could halve the disability employment gap, which is a Scottish Government target, it would make a real difference to the numbers in poverty,” Scott says.

He adds: “We do need to see more investment in employability that is directed at disabled people… If we could actually provide disabled people with much more support, then we could get many more of them back into work, where they want to be. That sort of support is more expensive, but it does pay you back in the longer term because people begin to pay taxes on their earnings rather than being reliant on benefits for their income.”

Some of that support will be about making sure workplaces, and transport to those workplaces, are accessible. Some will be about ensuring there is adequate and flexible childcare – both for disabled parents to make use of and for disabled children to be looked after.

Not only are disabled people more likely to not be in work in the first place, but those that are in work are more likely to be trapped in low paid work or insecure work

There is also the issue of encouraging take-up of what is currently available. Scott describes the Access to Work scheme, which provides grants as well as other support to help those with a disability find or stay in work, as “one of the best kept secrets in the UK”. “Most employers don’t know about and most disabled people don’t know about. It could actually assist a lot of people.”

But employment is not a silver bullet. The Joseph Rowntree Foundation’s 2023 report on poverty in Scotland highlights disabled workers are far more likely to be in low-paid jobs. Full-time disabled workers earned £3,700 less a year on average than non-disabled workers in 2019.

Faulds says: “Work has long since ceased to be a way out of poverty for a lot of people. So yes, not only are disabled people more likely to not be in work in the first place, but those that are in work are more likely to be trapped in low paid work or insecure work. They might be getting paid, but they’re not getting paid very much. Disabled people are more likely to be in, for example, retail jobs. There are also quite a lot of people who are working in social care and the social care sector has an incredibly undervalued and underpaid workforce.”

And then there’s the recent announcements about benefit changes in the Autumn Statement. The UK Government plans to reform work capability assessments, introduce mandatory work placements and toughen up sanction rules, which Faulds says “a lot of people are very, very concerned about”.

“There is also a fear from some people that this could lead to the beginning of a conflation between disability payments – things like PIP and disability allowance at UK level, child disability payment and adult disability payment in Scotland – and unemployment or low-paid social security payments.

“Those are supposed to be payments for the additional costs of disability, exactly the kind of stuff that Scope highlighted. That money should not be contingent on whether or not you are in work; that is money that is to support people with a disability.

“People are quite worried that if those two things end up conflated, they will end up losing their disability payments.”

Another separate but related group being impacted by the cost-of-living crisis is unpaid carers. As Becky Duff, director for Scotland at the Carers Trust, explains, “carers incur all of those costs” because “they are living in a home with somebody with disabilities”.

The envelope that you perhaps used to manage with is not stretching – and that’s not unique to carers, but it’s definitely exacerbated by that caring responsibility

Statistics on poverty among unpaid carers are less readily available than for disabled people, but a Carers UK report from 2022 warned this group was “spiralling into poverty”. A year on, the charity’s latest report confirms poverty and financial insecurity has grown due to the cost-of-living crisis. More than a quarter of carers are struggling to make ends meet, with many cutting back on food and heating. One in six of those in receipt of Carer’s Allowance have visited a food bank.

Duff says: “People who were managing are now just not. Things are just so expensive, the envelope that you perhaps used to manage with is not stretching – and that’s not unique to carers, but it’s definitely exacerbated by that caring responsibility. It’s not a case of ‘I can go and get another part-time job to top up’ or ‘I’m going to be selective about when I turn my heating on’.”

Like Scott, Duff believes improvements to employability support could help a lot of people keep their head above water. “There’s real issues for carers around employability. We speak to a lot of carers who are doing 50-plus hours of care per week, that’s not unusual. So actually sustaining a full-time job on top of that is incredibly challenging and career progression can be really challenging… If we want to support people to work and to contribute to our economy alongside their caring role, then we need to make sure that there’s the right kind of employability support in place.”

She backs the expansion of eligibility for Carer’s Allowance, saying the criteria now is “quite restrictive”, but ultimately she wants a much wider form of social security: “We’d like to see an introduction of a minimum income guarantee for unpaid carers so they’re not being driven into poverty because of their caring role. That feels really important and that’s the way that, as a society, we could really show and demonstrate that we understand the value of caring – not just the social value of caring, but actually the economic value too.”

Though the cost-of-living crisis has unquestionably put further strain on disabled people and unpaid carers, it is also clear that the starting point was not a strong one. Scott admits that he does “worry at times that disabled people are neglected in decision-makers’ thinking”. “Disabled people face particular barriers, they need particular solutions and that means that you need to design your policy to make sure that it lifts disabled people out of poverty when you apply it.”

Faulds agrees. “There isn’t necessarily full consideration for disabled people in decision making. That goes to a point the Alliance regularly make which is, especially when it comes to budgets and to spend, you need to be thinking about a human rights based approach when you’re taking these decisions… If we’re not putting human rights at the centre of government decisions and funding decisions, that’s exactly why we end up with disabled people losing out.”