Cost of living: the impact for disabled people

We are in the middle of the worst cost of living crisis for decades, and disabled people are being hit hardest.

Disabled people feel let down by the government and are struggling with the cost of energy and food. Often having to make devastating decisions about what to prioritise.

Download our Cost of living report (PDF 29MB)

The effect of inflation on disability benefits

The value of benefits had seen a significant cut. This is because they have not kept pace with inflation. As of October 2022, this has been up to £687 for income-based Employment Support Allowance (ESA).

Before this crisis, more than 4 in 10 families who rely on disability benefits were living in poverty. 

Source: Time to Think Again: Social Market Foundation and Scope (2021).

51% of disabled people are concerned about affording the rising cost of food over the next few months.

We are concerned that even more disabled people will be pushed into poverty.

Disabled people and their families need support

Our Disability Energy Support service has seen a 500% increase in the number of referrals, compared to the same time last year.

In September 2022 alone 44,000 people accessed our advice and support for cost of living. A 72% increase compared to this time last year.

The government said that it wants to support those who need it most. Yet, the current support does not come close for many disabled people.

  • 57% disabled people eligible for the £650 cost of living payment said it would not be enough to cover their increased costs for essentials.
  • 80% disabled people receiving the £150 cost of living payment said it would not be enough to cover their increase cost for essentials.

We also need more action from energy regulators, and suppliers.

Recommendations for government

Here are our recommendations for government.

An Energy Social Tariff

We believe the government should set up a discounted rate for disabled customers that need to use more energy.

As well as energy usage this should account for disabled people’s income.

We suggest that this should account for:

  • means-tested benefits, such as Disability Living Allowance (DLA), Personal Independence Payment (PIP) or Attendance Allowance.
  • households under the median household income
  • receiving carers allowance

86% of disabled people support this recommendation.

The Department for Work and Pensions could identify these households through benefits and claimant data.

The Energy Price Guarantee is universal and not targeted at those who need the support, such as households with a disabled person.

Bring forward the additional £150 Disability Cost of Living Payment

The further £150 payment promised by the government should be made now, rather than waiting until 2023. This would help support disabled people this winter.

Disabled people that are not on means-tested benefits have received a £150 cost of living payment. Although welcome, is woefully inadequate. 80% of disabled people said it was not enough.

The payment made in October 2022 is likely to have been used already.

Reverse eligibility changes to Warm Home Discount

We would like to see the recent changes to the Warm Home Discount (WHD) and Energy Company Obligations (ECO) scheme reversed.

Warm Home Discount: Eligibility Statement

The £150 rebate on energy bills that comes from WHD is welcomed. But these changes have meant that 290,000 disabled people have been removed from WHD at a time when they need it most.

DLA and PIP are designed to support with the extra costs of being disabled, removing WHD is only making the situation worse.

Overhaul process for increasing benefits with inflation

We believe the government should reduce the time between measuring inflation and increasing benefits. This gives a more accurate reflection of inflation.

We also believe, that in times of spiralling inflation, the government should increase benefits twice a year.

Currently, the UK government increases benefits once a year, in April. But based on the impact inflation has had on the value of benefits, it is clear the system cannot cope with rapid rises.

This leaves millions of disabled people effectively getting their benefits cut.

For example: As of October 2022. A single disabled adult, over 25 years old who is receiving income-based ESA, has already seen a cut of up to £687.

Raise awareness of Household Support Fund (HSF)

Our research shows that awareness of the HSF among disabled people is low, with only 8% saying they successfully applied.

Awareness of this fund needs to be greatly improved, so that more disabled people can get access to the funding the scheme offers.

In the Government's Autumn Statement 2022, they stated local councils will receive £1 billion to fund these payments.

Review standing charges on energy bills

In the short term, Ofgem could mandate that standing charges are paused for disabled households this winter.

From our polling of disabled people, pausing standing charges for winter is supported.

  • 64% strongly supported
  • 83% supported
  • 3% opposed

Energy Assistance Payment for families with seriously ill children

The government should create a national energy assistance payment to replace or supplement local NHS medical grants and reimbursement schemes.

NHS service specifications state that local NHS Trusts can reimburse running costs for certain equipment used at home, such as:

  • oxygen concentrators
  • dialysis machines

But access to reimbursement or medical grants is inconsistent. Many patients get very little or no financial support to help pay for the energy costs of running medical equipment.

Contact's Out of Energy research found only 3% of families surveyed got support for running medical equipment from an NHS Trust or council.

Those that did, had a long battle, found equipment was not included and grant money rarely covered the true cost.

Children Winter Heating assistance.

Recommendations for regulators

Here are our recommendations for regulators.

Temporarily stop installation of prepayment meters (PPMs)

Ofgem should issue a stop to any new installations of PPMs in households with disabled people, whilst bills are so high. This stop should be legally enforceable.

As part of this recommendation, we also call on Ofgem to:

  • mandate that households with disabled people who are on a PPM are contacted by their supplier and offered a credit meter
  • stop energy supplier remotely switching disabled customer from smart meters to prepayment mode from credit mode

Many installations of PPMs are done under warrant or to recover debt. With the risk of losing supply being so dangerous for disabled people, we argue that PPM installation is unsafe.

Remove higher costs for people on PPMs

People on PPMs pay an estimated £46 a year more than those on other meters. This includes disabled people and families with disabled children.

This group pay for their energy in advance, so are already at a disadvantage and are at a higher risk of being disconnected or rationing this winter.

The consequences could be devastating.

Prepayment energy customers feeling the strain (BBC news)

Stricter enforcement of rules

Ofgem and Ofwat should take a zero tolerance approach this winter. It is not enough to:

  • issuing stern letters
  • press releases
  • name or shame suppliers

Fines must be issued, where appropriate and removing licenses for repeat or serious poor performance. Breaking of licence conditions should not be off the table.

Capturing financial and affordability data of disabled households

The Priority Services Register (PSR) is the main mechanism energy and water suppliers use to capture information about disabled customers and households. But this does not cover financial situations.

There are 2 options.

  1. Change the PSR to cover finances, so that customers struggling financially can be identified and get help earlier. 60% of disabled people support PSR capturing financial data.
  2. financial data is kept separate but shared in the same way.

Is it clear energy and water companies should be mandated to gather financial and affordability data by regulator.

Recommendations for energy and water companies

Here are our recommendations for Energy and Water companies.

Prioritise disabled customers who are already in debt

Energy suppliers must urgently reach out to households with disabled people who are in debt, offering them help and support. Without this proactive approach, the debts will only increase, causing further hardship.

  • 43% of caller to our Disability Energy Support Service are in debt by £1351 on average.
  • 24% of disabled adult are in debt by £254 on average.

Proactive action will help both disabled people and suppliers. Early support will reduce the risk of serious debt, that ultimate ends up getting written off.

Effective, empathetic support for disabled customers

We would like to see a consistent approach across the energy and water sectors. Ensuring disabled customers are treated the same regardless of which supplier they are with.

Those suppliers who are part of the Scope Utility Membership are proud of the work they do. We would be pleased to collaborate with more suppliers. Rolling out training programmes that benefit disabled people.

Increase awareness of ‘water sure’

Only 33% of households with a disabled person are aware of the Water Sure scheme.

Water companies should contact their disabled customers to raise awareness of the scheme. Getting qualifying disabled people to sign up.

Water Sure is a tariff offered by water companies. It is offered to customers who use more water due to a medical condition and are on certain benefits.

Increase awareness of the Priority Service Register

Energy suppliers, networks, and water companies should reach out to all their customers. Especially new customers and those they have not contacted.

They should do this through various means, such as:

  • by phone
  • by post
  • on social media

When on the PSR, disabled people should get the full benefits related to their needs.

Two-way signposting with charities

Energy and water suppliers should build partnerships with:

  • disability charities
  • disabled people’s organisations
  • others who can provide specialist support

Given the pressure suppliers are under, they cannot be expected to provide all the types of support needed, such as:

  • income maximisation
  • debt advice

More trusted, specialised charities and organisations can step in. But this should be a two-way process. Energy and water suppliers should provide charities working in this space with a dedicated hotline.

How the crisis is affecting disabled people

Household finances and debt

Disabled people’s finances have reached crisis point. For some it is no longer a case of choosing between “heating and eating”. Many disabled people cannot do either.

Right now:

  • 57% of disabled people say their income does not, or only just, covers their bills
  • 50% of disabled people say they will struggle financially this winter, unable to afford essentials

Callers to our Disability Energy Support and helpline services are feeling isolated and anxious. 43% of callers are already in energy debt, averaging at £1,351.

Families who use our services have told us they are unable to cover bills and essentials.

Some parents-carers are using credit cards and overdrafts to cover these costs but cannot afford repayments and charges. Leading to increases in debt.

I am about to lose £700 a month from my universal credit claim, due to my disabled young adult (aged 19) staying on in education and they are no longer eligible for disabled child payments. I am a carer on a fixed income. I cannot make any extra money. I need to use the washing machine, to turn on the lights, to use the cooker, I need to buy certain foods because my Autistic daughter only likes certain brands. I have and care for my two disabled young adults in my household… my outgoings mean that after August I will be left with £7 a month to live on. How can anyone be expected to live like this? It's tragic, humiliating, and I have never felt so let down by a government in my life

Member of Scope’s Online Community

39% of parent-carers we surveyed in September 2022 said. They, or their partner, have considered increasing or have increased their work hours, to generate more income for their families.

But they face many barriers, including:

  • being a single parent and the primary carer for their disabled child
  • not having a support system to help with childcare whilst they work
  • lack of accessible childcare which meets their child’s needs
  • costs of childcare for working hours outside of school hours

Since the start of 2022:

  • 36% of parents and carers we spoke to said they had pawned or sold possessions
  • 32% had borrowed money from family or friends for essentials
  • 25% have accessed support through a food bank

The increase in the bills has put us beyond help really, we are in survival mode being squeezed for every penny we can just about manage.

Polling participant

Benefits and financial support

Most working age households that include a disabled person are receiving some form of benefit, from support with extra costs, to help for those unable to work or on low incomes. The benefits system should provide a safety net.

Source: The Long Squeeze (Resolution Foundation)

But many disabled people who receive benefits have seen a sizable reduction in the value of their income over the last year.

We calculate that from April 2022 to April 2023, a single disabled adult over 25 years old faces the following cuts, due to rising inflation.

  • Those receiving contributions-based ESA, face a cut of up to £352.
  • Those receiving income-based ESA face a cut of up to £840.

These cuts affect nearly 7 million disabled people in England and Wales.

For disabled people relying on more than 1 benefit, the impact of these cuts will be greater. Families with disabled children stand to lose the most.

Even if benefits are increased in line with inflation in April 2023, they will not regain their 2021 value until 2024. Additional financial support is essential.

The impact of these real term cuts has been devastating. 58% of callers to our energy helpline have benefits as their sole means of income, and on average they face debts of £1,417.20.

Benefits is one of the main reasons people give for calling Scope’s helpline, and we regularly hear from families in dire situations.

Parent-carers often ask for help with:

  • identifying the benefits they are eligible for
  • help with filling in assessments for Personal Independence Payment (PIP) and Disability Living Allowance (DLA)
  • support with the appeals process

Our webpages on benefits and funding the costs of being disabled have seen an 861% increase in views compared to last year.

For our pages on funding the costs of having a disabled child, this is starker. A 1367% increase in views over the same period.

Parents-carers of disabled children tell us that long waits for benefits assessments and decisions put further stresses on their finances.

Since 2015, there has been a steady increase in waiting times from when someone starts their PIP claim to receiving a decision. Rising from just over 5 weeks on average, to 18 weeks as of July 2022.

Effect on physical health and conditions

The cost of living crisis is making disabled people make choices that are detrimental to their health.

71% Of disabled people who need to use more heating because of their long-term condition or impairment are concerned that they will not be able to heat their home this winter.

40% Said that going without heating would cause them to be uncomfortable or in pain.

31% Said it would severely affect their health.

9% Said that going without heating could put their lives at risk.

The situation is similar for families. 32% of parent-carers said the crisis is affecting their child’s physical health. Beneficial activities like swimming are being reduced.

There's not a lot we can do! What we used to do, even before the rise in bills, was to wear more clothing and only switch on the heating when necessary. Now, my aged and ill mother-in-law has moved in with us. Our energy usage has risen (and will obviously rise even more in the winter) just as the prices started to sky-rocket!

Anonymous

Emotional wellbeing and mental health

Stress and worry about coping with increasing costs are taking their toll on the mental health disabled people and their families.

For example, being able to afford meals, travel, energy bills and other essentials.

  • 52% of disabled people say that increasing costs are negatively affecting their mental health.
  • 46% saying it is also negatively affecting their family’s mental health.
  • 26% saying increasing costs are causing arguments in the home.

This is worse for parents and carers.

  • 88% say the cost of living is affecting their family’s emotional wellbeing.

[The cost of living crisis] Really affected mine and my daughter’s mental health. She’s old enough to understand we can’t afford basics with price increases. She worries about me and bills when she should be focusing on her education and having fun with friends.

Member of Scope’s Online Community

We’ve also seen safeguarding concerns regarding mental health increase across Scope due to the cost of living crisis. Cases have more than tripled in 2022 compared to 2021.

Choices and sacrifices

Many disabled people are making difficult choices and sacrifices to get by.

Our helpline has heard from disabled people who are:

  • only heating 1 room
  • only eating 1 meal a day
  • only watching TV for an hour

Rising costs are also having an impact on disabled people’s mobility and independence.

We regularly hear from people who cannot afford:

  • to run a car
  • pay for a personal assistant
  • charge mobility equipment, such as electric wheelchairs and hoists

My daughter has autism and ADHD, it is hard to explain to her why we can't have things, why we can't go places, why she can't go to a birthday party because I can't afford the gift. I am also autistic ADHD with no family support and the added stress is killing me

Parent of a disabled child

As food becomes more expensive, disabled people are forced to take more extreme measures.

Two-thirds of disabled people who are receiving benefits are worried about affording food over the next few months.

Of these:

  • 48% plan on skipping meals
  • 22% will not be able to afford food due to dietary needs, such as gluten free

Reduced spending by parents is also affecting disabled children, as they are missing out on leisure activities and other childhood experiences.

  • 65% of parents and carers have cut back or stopped day trips and activities
  • 51% have stopped buying computer equipment, toys, and gifts

My autistic son relies on his computer to interact with friends and family around the world. We have had to restrict the time his computer is on during the day, causing meltdowns and frustration.

Member of Scope’s Online Community

Cost of living advice: pageviews comparison

Help with Gas and Electricity

September 2021: 1,573

September 2022: 11, 514

Funding the extra costs of disability

September 2021: 979

September 2022: 4,963

Benefits and mental health

September 2021: 213

September 2022: 7,521

Experience with water and energy companies

Rising utility bills, especially for gas and electricity, are the biggest causes of the cost of living crisis.

It is critical that utility companies prioritise their disabled customers. Ensuring extra support is offered this winter and in the future. When utility companies get it right, it is very beneficial to both customer and company.

But all to often, this is not the case.

Quality of supplier support

Energy and water companies have a duty of care to their customers, and licence conditions require this. Especially to customers in ‘vulnerable circumstances’.

Warm Home discount eligibility statement

But we know that energy debt is the most requested topic from disabled people contacting our Disability Energy Support service.

This suggests that energy suppliers are not providing the help that is needed.

Far too often the response is to install a prepayment meter (PPM) to recover the debt.

  • 45% of households with a disabled person have experienced a problem with their energy supplier in the last 12 months.
  • 18% have been overcharged, reporting that direct debit payments are too high.
  • 12% receive poor customer service.
  • 8% have received billing mistakes.
  • 8% also said their supplier has gone out of business.

Support from energy and water companies is vital for disabled customers and must be available at the time of need.

I have emailed and messaged my energy supplier via social media, but they have never replied to my pleading for help with rising costs.

Anonymous

It is difficult to get through to my supplier for the correct support.

Anonymous

My supplier was unable to offer any practical or financial help to me. Just advice on how to reduce utility costs overall - which I was doing anyway - rather than reducing charging rates.

Anonymous

Prepayment meters

Callers to Scope’s Disability Energy Support service regularly tell us about poor supplier practice, often in relation to PPM installation.

Ofgem's regulations make it clear that PPMs should only be installed when appropriate.

For example: where disabled people would not be at immediate risk if they lost supply or can afford to top up.

  • 72% of those on prepayment meters have experienced problems in the last 12 months.

This includes:

  • 50% being forced to ration energy usage so they do not lose supply
  • 26% going off supply to save money
  • 14% going off supply because they were not physically able to top up due to their impairment

Of those who rationed or were cut off:

  • 47% said they had to cut down on essentials, such as fridges, cookers, or phones
  • 25% said their or someone else in their household’s health had been put at risk

Worryingly, 28% of those who had issues with PPMs said their supplier did not offer any support.

I have been going off supply due to being too scared to use heating because it’s so very expensive. I've been using a duvet and dressing in layers of clothing instead.

Anonymous

It is hard to argue that forcefully installing PPMs in households with disabled people or children is appropriate. But this is exactly what is happening.

One caller needed to keep medication in the fridge. Going off supply would make that medication unfit for use. Yet, their supplier still tried to install a PPM to recover debt.

Priority Services Register (PSR)

The PRS is a vital tool for supporting disabled customers and their households. Signing up to PRS gives customers extra support from their supplier. It is free and there is no need to prove condition, age, or situation.

Priority Services Register

66% of disabled people registered on the PRS would recommend the scheme to others in need of support.

The biggest problem is making sure eligible disabled people are on the register. Our evidence suggests that:

  • 48% of disabled people have heard of the PRS
  • 67% of those aware of PRS, are registered with 1 or more of their suppliers

The impact of government support

The evidence above clearly demonstrates the extent of the crisis. And disabled people are hardest hit.

Since 2022 the government has introduced a range of measures, including:

  • targeted help for people on benefits
  • a £150 one off payment for disabled people
  • an Energy Price Cap

These measures are important for protecting households from high prices. But disabled households with higher usage and extra costs desperately need further intervention.

  • 60% of disabled people feel they are being ignored by the government around cost of living.
  • 24% feel forgotten by this government.
  • 20% feel insulted by the government’s response.

Crucially, disabled people tell us that the support from government is not enough to get them through the crisis.

  • 68% told us that the measures will not fully cover increases to energy bills and essentials.
  • 10% saying it will not cover any of the increases in costs.

The government has promised more support for 2023 and 2024.

  • Another £150 cost of living payment for disabled people.
  • A further £900 cost of living payment for people on means-tested benefits.

Disabled people feel the government's support is not enough

  • 11% said the £400 rebate would help cover increases in their energy bills this winter. 53% said this rebate needed to be much higher.
  • 71% said the £150 council tax rebate was not enough to help with the rise on cost of living. 43% said it was nowhere near enough.
  • 90% have not applied to the Household Support Fund.
  • 62% have not heard of the Household Support Fund.
  • 19% of disabled people feel abandons by the government.

In October 2022, the Chancellor announced a review into energy support led by the Treasury. As that review starts, we urge government to take on board the evidence we have set out and our recommendations.

The money the government are already giving us will only help us pay a certain amount. If they don't step up to help again, we will fall into debt with our energy company, unfortunately. We cannot pay them what we do not have. They know our financial situation so if they chose to increase our direct debit, we will just cancel it and pay the same as we are now and just have a debt to pay back when this eventually comes to an end. But we will also switch the gas off, so we only use electricity and wear extra clothing and blankets

Polling participant

Data sources

This report is based on evidence we have collected from:

  • our energy and benefit support services
  • focus groups with disabled people and families
  • polling
  • analysis of government datasets
  • Scope research

Opinium surveys

  • 1,000 UK adults responsible for energy bills and with a disabled person in the household. Carried out between 22to 23 September 2022.
  • 1,000 disabled adults in England and Wales Carried out between 15to 21 September 2022.
  • 1050 Nationally representative disabled adults in the UK. Carried out between 26 August to 2 September 2022.

Scope surveys

  • Panel survey of 69 participants of parents and carers of disabled children aged 0 to 25 years old. 8 to 12 September 2022. Carried out by Scope’s research panel.
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