Out of Energy

More than a third of families with disabled children are being forced to cut back on life-saving electrical equipment. That’s three times more than in March, before energy bills started to soar.

Of those, 40% say this is making their child’s condition worse.

We’re calling for targeted support for disabled households to avert a deepening cost of living crisis.

Why we’re campaigning

Our research of 3,893 families with disabled children, exclusively revealed on Channel 4 News, found that households with seriously ill and disabled children are paying on average £1,596 extra a year to run vital equipment. This is up almost £600 since April 2022.

As a result, over a third (39%) of these families have had to cut back on using essential equipment like ventilators, adjustable beds, ceiling track hoists, wheelchair chargers and suction pumps.

• Over three quarters (79%) have reduced the amount of energy they use in the last 12 months because they can’t afford their bills.
• Almost half (45%) say they have not been able to keep their home warm enough for their child’s needs.

• Only 3% get an NHS medical grant towards the costs of running disability or lifesaving equipment like oxygen concentrators. Families who managed to get a grant said not all equipment is included, and grants rarely cover true running costs.

Download the full survey results: Tables by area [.xlsx] and All findings [.pdf].

October’s price guarantee saw prices increase again. This means that the outlook for families with disabled children this winter looks extremely bleak.

What we want

We are working with other disability charities to demand action, including Together for Short Lives and Scope.

Together, we are calling for:

• An energy assistance payment for families of seriously ill and disabled children to cover the cost of running lifesaving medical and disability equipment.
• Bring forward the further £150 Disability Cost of Living payment and benefit uplift announced in the Autumn statement.
• Reverse eligibility changes to the Warm Home Discount that excluded disabled people
• Social tariffs for households on disability benefits.

“Benefits not rising would be a disaster for families with seriously ill and disabled children who need targeted support, and they need it now.”

Anna Bird, Contact CEO

Contact also believes energy companies can do more to help disabled households reduce their bills. For example, by reducing direct debits for those on priority registers and households on disability benefits.

What you can do

We had hoped the Budget would address the critical need for more support.

But the Chancellor didn’t announce any measures that would provide immediate help to families this winter.

Donate to support our vital work

This winter, thousands of families with seriously ill and disabled children won’t be able to afford to run the life-saving electrical equipment their child relies on.

Dad Taran from Kent is a full-time carer to two-year-old Skye. Skye has chronic lung disease, pulmonary hypertension and complex medical needs after being born four months premature. Taran and Skye launched our Out of Energy research on Channel 4 News.

“I haven’t paid the electricity bill for two months now. I have no idea what to do. I can’t not give her oxygen, but I can’t afford to run the equipment that keeps her alive. If she gets pneumonia, it will be life-threatening.

“Choosing between breathing or freezing isn’t a choice anyone should be made to do.”

Taran, dad and full-time carer to Skye

We’re here for families like Taran and Skye’s

With our high-quality, independent finance advice, families can get the help they’re entitled to – more important than ever as the cost of living crisis bites.

And we won’t stop campaigning until the government provides the essential targeted support families with disabled children need.

Donate today

Past campaign successes

Following months of tireless campaigning and media coverage by Contact and families, in May 2022 the Chancellor at the time announced a package of measures to help with the cost of living crisis.

We would like to thank families, supporters and charity partners for backing our Out of Energy campaign.

We campaigned on the findings of our first Out of Energy survey, revealed exclusively on the BBC on their new Access All podcast.

Based on responses from 5,499 families in March 2022, we found that:

• From April 2022, families with disabled children expected their annual energy bills to be more than £3,000 per year – almost double that of an average UK household.
• UK households with disabled children had average energy bills of £1,909 per year in the previous 12 months – £600 more than the average household bill (pre April 2022 price cap increase).
• Last winter, 42% went without heating and 10% went without vital electric-powered disability equipment because they were unaffordable to run.
• Families estimate they pay £74 per month to run disability aids and equipment, such as adjustable beds, ceiling track hoists, wheelchair chargers, feeding and suction pumps.

Download the full survey report [.pdf] and national/regional breakdown [.xlsx]

Watch Emma Foster from Wigan on BBC Breakfast and our Head of Campaign, Una Summerson, talking about our Out of Energy findings.

Thank you to everyone who completed the survey and helped with our campaign success. We really appreciate it.

With a new Prime Minister and Autumn Budget on the way, we will continue with our Out of Energy campaign.

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Cost of living crisis: 6 things all families with disabled children can do now

Tuesday 22 February 2022

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