UK Disabled on Legacy Benefits Struggle Through Pandemic

Author: Disability Benefits Consortium
Published: 1 Sep 2021 - Updated: 29 Sep 2026
Publication Type: Reports & Proceedings

Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content

Synopsis

This report presents findings from a Disability Benefits Consortium survey of 1,838 disabled people in the United Kingdom who receive out of work legacy benefits such as Employment and Support Allowance (ESA) and Jobseeker's Allowance, carried out between August 3 and 20, 2021. Respondents included people living with multiple sclerosis, motor neurone disease, and learning disabilities, and 78 percent said their finances were worse than at the start of the COVID-19 pandemic. Just over half reported spending significantly more on household bills and utilities, 67 percent said their weekly income left them unable or struggling to eat a balanced diet and keep up with bills, and 46 percent were falling behind on rent or mortgage payments. The survey was released ahead of a High Court hearing on whether the Government acted unlawfully by withholding the £20 weekly emergency increase given to Universal Credit claimants from nearly 2 million disabled people on legacy benefits. Drawing on a network of more than 100 disability and social security organizations, the report is a useful record for disabled people, carers, advocates, and policymakers looking at how pandemic-era benefit decisions affected household budgets, health, and daily living.*

At a Glance

• 1 - One survey respondent reported losing more than 15kg of body weight from going hungry.
• 2 - Nearly half of respondents (46%) described the Government's decision as discriminatory.
• 3 - A third of respondents (33%) struggled to attend medical appointments because of public transport, petrol, and taxi costs.
• 4 - Disabled people accounted for at least 60% of COVID-related deaths, while many on legacy benefits shielded in isolation for over a year.

Topic Definition

Legacy Benefits

Legacy benefits are the older means-tested welfare payments in the United Kingdom that are being phased out and replaced by Universal Credit. They include income-related Employment and Support Allowance (ESA), income-based Jobseeker's Allowance, Income Support, Housing Benefit, Child Tax Credit, and Working Tax Credit. Many disabled people and those with long-term health conditions who are unable to work receive support through these benefits, particularly ESA. During the COVID-19 pandemic, people on legacy benefits were not given the temporary £20 weekly increase paid to Universal Credit claimants, a decision that disability organizations challenged as unfair and discriminatory.

Overview

Thousands of disabled people on out of work benefits, such as Employment and Support Allowance (ESA) and Jobseeker's Allowance, are facing considerable mental health and physical challenges as the pandemic has left them struggling financially, new research shows.

The stark findings are from the latest Disability Benefits Consortium's (DBC) survey(1). It was filled out by over 1,800 disabled people in receipt of out of work benefits (also known as 'legacy benefits') - including those with multiple sclerosis (MS), motor neurone disease (MND), and learning disabilities - and found:

• Over two thirds (78%) said their financial situation was 'worse' compared to at the start of the pandemic.
• Half (52%) are spending 'significantly more' on household bills and utilities than they were before the pandemic, with a third (37%) spending 'somewhat more'.
• Individuals' weekly income meant they were unable or struggling to eat a balanced diet (67%), attend medical appointments due to public transport, petrol and taxi costs (33%), and pay bills, including their water, gas, electric, rent and mortgage (67%).
• Just under half (46%) were falling behind on rent or mortgage payments.

The findings come one month before the High Court is to hear on 28 and 29 September whether the Government acted unlawfully by not giving nearly 2 million disabled people on legacy benefits the same emergency increase of £20 per week that was given to people on Universal Credit to help them survive the COVID-19 crisis.

Samantha, 50, from Southampton is partially sighted. She also lives with chronic spinal problems, bowel incontinence, nerve damage in her right foot, as well as depression and anxiety. She is on ESA and Personal Independence Payment (PIP), and relies heavily on her sister and 13-year-old son to care for her.

Talking about the impact of the pandemic on her finances, she says:

"The Government have made me feel like a second class citizen - it's incredibly unfair and discriminatory that they didn't give people like me the extra £20 per week to help survive the pandemic. I understand the top up was for general living, but when you're disabled your living expenses are exactly the same."

"My finances have taken a huge hit since the pandemic started. My son - who does the shopping for me - had to shop locally as he was too young for me to send him to a major supermarket. This meant everything was more expensive - even things like a loaf of bread. As he was off school it meant we were going through more food, so I was going without my meals so he could eat three times a day."

"I also couldn't risk putting the heating on, so through winter we both had to wear three cardigans each. I had to make sure I was taking my medication as I was in a hell of a lot of pain - made worse by the cold."

"Having an extra £20 per week then, and now, would mean I could get a supermarket delivery and not rely on my son to be off school so he could push me in my wheelchair to the shops."

In response to the DBC survey, one person said:

"I've lost over 15kg in body weight from going hungry."

Another said:

"At the moment I have no bath or shower as I cannot use the bath due to my disability and the shower is broken and I cannot afford to replace it. It is a horrible way to live."

In addition, someone wrote:

"I cannot afford to socialise and attend events that used to help my mental health. I am now more physically disabled than before the pandemic started and cannot afford taxis."

The Government has continually defended this decision. Excuses have ranged from saying this would be "too complicated" for their computer system to arguing they weren't aware of any extra-costs or impact on disabled people. Most recently they have said people on legacy benefits have the option to switch to Universal Credit, ignoring the fact that wider adjustments could leave people worse off, as well as serious flaws in the assessment and monitoring process of Universal Credit.

Respondents to the DBC survey said they felt the Government's actions were 'discriminatory' (46%), 'cruel' (21%), and unfair (21%), with one person saying:

"The Government are sending a clear message that the disabled do not matter'. Another noted: "I think they hope to drive us all to suicide or an earlier death from our disabilities."

Anastasia Berry, Policy Manager at the MS Society and Policy Co-Chair of the DBC, says:

"The impact of the pandemic has been devastating for many disabled people, and it's heartbreaking to read these latest findings. For the last 18 months we've called on the Government time and time again to stop discriminating against disabled people, and yet here we are again. How much more evidence do they need to show that disabled people, including those with MS, must stop being ignored and given the financial support they desperately need?"

"MS can be relentless, painful and disabling, and around a third living with the condition have to rely on ESA because they are simply unable to work. Disabled people are being punished for something that is beyond their control, and it shouldn't take another survey, or the Government being taken to court, to acknowledge this."

Ellen Clifford, on behalf of the DPAC, said:

"It's beyond time that the Government rectified their discriminatory approach to the £20 benefit uplift applied to Universal Credit during the pandemic. The failure to do this ignores the fact that it's disabled people's unavoidable essential spending that went up the most as a direct result of the pandemic."

"In the sixth richest country in the world no one should be left too poor to bathe, too poor to do their laundry, too poor to eat and to heat. This at the same time as disabled people have been in desperate fear for their lives with a minimum 60% of Covid-related deaths being those of disabled people and many of those on legacy benefits isolated and shielding for well over a year. This is one injustice that could be put right so easily and at relatively little expense to the Treasury. It's abhorrent that the government refuses still."

Ella Abraham, Z2K's Policy and Campaigns Manager and Campaigns Co-chair of the DBC, said:

"It's been 18 months of discriminatory Government excuses which have continued to leave 2.5 million people without the vital income they need to support them throughout the pandemic and beyond."

"The Government must end this two-tier welfare state to ensure disabled people and those with health conditions aren't pushed any further into poverty and destitution."

Frequently Asked Questions

NOTE: Researched FAQs by Disabled World (DW)

What is Employment and Support Allowance?

Employment and Support Allowance is a UK benefit for people whose illness or disability limits their ability to work. It provides financial support and, depending on the assessment, may include help to prepare for work or support for people who are unable to work at all.

What was the Universal Credit £20 uplift?

The £20 uplift was a temporary increase to the standard allowance of Universal Credit introduced in April 2020 to help households through the COVID-19 pandemic. It ended in October 2021 and was not extended to people on legacy benefits.

What was the outcome of the High Court case over the £20 uplift for legacy benefits?

In early 2022 the High Court dismissed the challenge, ruling that the Government had not acted unlawfully by leaving legacy benefit claimants out of the uplift, although campaigners continued to argue the decision was unfair to disabled people.

Should disabled people switch from legacy benefits to Universal Credit?

It depends on individual circumstances. Some people may be better off and others worse off, and once a claim for Universal Credit is made it is not possible to return to legacy benefits, so getting a benefits calculation or advice from a welfare rights service first is strongly recommended.

What is managed migration to Universal Credit?

Managed migration is the process where the Department for Work and Pensions sends people on legacy benefits a notice asking them to claim Universal Credit by a deadline. People moved this way may qualify for transitional protection so their overall entitlement does not drop at the point of the move.

What is the difference between ESA and Personal Independence Payment?

ESA is an income replacement benefit for people whose health limits their ability to work, while Personal Independence Payment helps with the extra daily living and mobility costs of a long-term condition or disability. PIP is not means-tested and can be claimed whether or not a person works.

Why do disabled people face higher living costs?

Disabled people often pay more for heating, energy for medical equipment, specialist diets, accessible transport, taxis, and care or support services. Research by disability charities has found these extra costs add up to hundreds of pounds a month for many households.

Where can disabled people in the UK get help with benefits and money worries?

Free and confidential help is available from organizations such as Citizens Advice, Turn2us, Scope, and local welfare rights services, which can check benefit entitlement, help with applications and appeals, and point people toward grants and hardship funds.

Reference

(1) Disability Benefits Consortium survey of 1,838 disabled people on legacy benefits, conducted through Survey Gizmo, 3-20 August 2021

The Disability Benefits Consortium (DBC) is a network of over 100 organisations with an interest in disability and social security. Using our combined knowledge, experience and direct contact with millions of disabled individuals, people with long-term health conditions and carers, they seek to ensure that Government policy reflects and meets the needs of all disabled people. For a full list of members.

Insights, Analysis, and Developments

Editorial Note: Behind the percentages are people making hard trade-offs every week - a partially sighted mother in Southampton skipping meals so her teenage son could eat, wearing layers of cardigans through winter instead of turning on the heat, and depending on him to push her wheelchair to the shops. The Government's explanations for leaving legacy benefit claimants out of the uplift shifted over time, from computer system limits to claims it knew of no extra costs, and finally to the suggestion that people simply move to Universal Credit, even though switching can leave some households worse off. Disability groups including the MS Society, Disabled People Against Cuts, and Z2K argued that disabled people saw their unavoidable essential costs rise the most during the pandemic, and that fixing the gap would have cost the Treasury relatively little. Around a third of people with MS rely on ESA because they cannot work, which shows how directly these policy choices reach people with long-term conditions, and why a two-tier benefits system remains a pressing concern for disabled people, carers, and seniors across the UK.*

Attribution/Source(s): This quality-reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by Disability Benefits Consortium and published on 1 Sep 2021, this content may have been edited for style, clarity, or brevity.

* Editorial additions by Ian C. Langtree.