Potential and Possibility 2024: Increased financial vulnerability 

People with complex disabilities tell us what needs to change

No household should have to experience running out of food or live in fear of unaffordable bills, but this is the level of financial vulnerability disabled people face. 

Over the last few years, our research has shown that people with complex disabilities have been adversely impacted by the rising cost of living – more so than other demographic groups.

Despite calls for better support, not enough has been done to relieve the financial vulnerability experienced by disabled people. 

One third of people with complex disabilities reported that they’d run out of food.

Source: Potential and Possibility research 2024

Can you imagine running out of food? 

Since 2022, the cost of food and drink in the UK has, as a result of inflation, continued to climb. Disabled households are much more likely to experience food insecurity as a result. In our 2024 survey, a third (33%) of people with complex disabilities reported that they’d run out of food and were unable to afford more. That’s compared to 8% of disabled people and 4% of the general public.  

For many, it’s not just a case of moderating their weekly shopping list but also making significant changes to their eating patterns, even reducing how much they eat in a day. This is defined as ‘very low food security’ and is something Keith and his family have experienced as they juggle the costs of supporting their disabled son. 

Keith and his partner Helen are full-time carers for their 21-year-old son Geordie. Geordie has CHARGE syndrome, autism and is deafblind. Keith told us how, since the cost-of-living crisis, they’ve needed to monitor essential household costs very closely. 

A close-up of Keith, a white man with a mustache and glasses wearing a yellow t-shirt.

“We’ve really cut down what we spend on food. I often only eat twice a day to cut down on costs. Despite us trying to save and be careful, we don’t have a choice about the extra costs we face to support Geordie. We’ll make whatever sacrifices we need to make.” 

Read Keith’s story: Rising bills are forcing us to cut back on food

Speaking about the support available to him, Keith feels that disabled people are often an afterthought. Even before this crisis, there was growing evidence that benefit rates are insufficient to meet people’s basic needs, with increasing numbers of disabled people facing destitution and food insecurity. 

Over half of people with complex disabilities in receipt of benefits were struggling to afford an essential bill.

Source: Potential and Possibility research 2024

Benefit support that can’t keep up with basic costs of staying alive and well 

At Sense, we think that benefits should be set at a level that lets people with complex disabilities, whether they are in work or not, lead meaningful lives that are as independent as possible. Our research highlights how the current benefits system is still not doing this. 

Over half (52%) of people with complex disabilities in receipt of benefits were struggling to afford an essential bill.

For disabled households, ‘essentials’ really are non-negotiable, and the costs of running a disabled household are significant. More energy is used to run essential equipment, such as breathing machines and feeding pumps, whilst heating is vital for those who can’t regulate their own body temperature. Cutting down on heating or electricity usage would be life-threatening. 

Anna has been an incredible campaigner for Sense over the last year, sharing her family’s experiences to shed light on the desperate situation disabled families are forced in to. 

A young adult man next to his mother, a woman with brown hair and sunglasses on her head

“My eldest, Charlie, was diagnosed with a genetic condition called SPG11 in 2017. Charlie can’t monitor his own temperature, so he gets cold easily and if he gets too cold, he could go hypothermic.  

“We’re so careful and have an electric heater to heat his room properly, but we can’t always afford to heat the rest of the house.

“At first, my two other kids, Mac and George, didn’t understand why the house was so cold, but Charlie’s room was warm… I just want them to be able to come home to a warm house.” 

Read Anna’s story: How this Christmas will be different for my family

People with complex disabilities who receive benefits were nearly twice as likely to be unable to afford to pay a bill, direct debit or standing order than those not on benefits. 

Source: Potential and Possibility research 2024

Anna isn’t alone. People with complex disabilities who receive benefits were nearly twice as likely (41%) to be unable to afford to pay a bill, direct debit or standing order than those not on benefits (21%). 

When even the most basic and vital expenses stretch household finances, additional costs present serious challenges. Well over half (62%) of people with complex disabilities couldn’t afford a necessary but unexpected expense of £850.  

We also found that over half (56%) of people with complex disabilities won’t be able to save a penny over the next year, indicating that there is no end in sight.  

When, in response to the cost of living crisis, Sense provided a one off emergency grant to disabled families, the majority of recipients needed the money for energy bills and food. 

a woman in a grey hat and a boy in a blue hat smiling

“Sense’s support fund will pay for the repairs to Jack’s powerchair, which is a huge relief. Without it, we may have gone into debt. Having to constantly think and worry about the additional costs is horrible and it makes me quite low sometimes.”

Catherine, whose son Jack has cerebral palsy, epilepsy and a learning disability

But for Catherine, whose son Jack has cerebral palsy, epilepsy and a learning disability, the money went straight towards maintaining his support equipment. 

We need long-term changes to the benefits system for disabled people. Their suffering does not need to be inevitable. It’s vital that disabled people are a top priority for the next government.

In our 2024 General Election manifesto, we set out seven key recommendations for how the next government can improve the lives of disabled people. This list includes: 

  1. Make sure disabled people can afford the essentials. 

    Disabled people have been struggling financially since before the cost of living crisis began. Now, many are barely able to afford food and energy.   

    This is an issue that is not going away and needs a long-term solution, not just quick fixes. 
  2. Make the benefits system work for disabled people. 

    People with complex disabilities often tell us that the process of applying for benefits is long, inaccessible and emotionally distressing.   

    Benefit rates don’t always cover the essentials, let alone the things it takes to make life meaningful. 
  3. Introduce an energy social tariff.

    Disabled people often face higher energy bills. A social tariff is a lower energy tariff for people who struggle to pay their energy bills, it could provide a long-term solution to the high energy costs faced by disabled people.  

Read our plan for change for people with complex disabilities

About this research 

Potential and Possibility is an annual piece of research on the experiences and aspirations of people with complex disabilities. The research involves polling and our own survey. This year we involved 1,279 people with complex disabilities in our research. This year (2024) is the third year we have carried out this research. 

These pages reflect the latest information from our 2024 research, building on our findings from 2023 and 2022. 

If you have any questions about the research, please contact [email protected]