We have joined with other charities including Contact and Sense in calling on the UK Government to help families with disabled children with their extra energy costs and soaring household bills as a result of the cost of living crisis.
Even before recent price rises, families with disabled children faced significantly higher costs compared to other families. Contact has found that nearly two thirds of disabled parents say that caring responsibilities mean they or their partner has given up paid work, losing on average losing £21,270 from their family income. Between 2020 and 2021, as a consequence of shielding, almost a third reported that they got into debt or borrowed money.
On top of this, families of seriously ill children incurred particularly high energy costs. This might be due to life-saving equipment powered by electricity or extra washing due to continence issues. Some disabled children are less mobile and get colder quicker. Others have health conditions that mean they can’t regulate their body temperature.
Contact have also found that:
- UK households with disabled children had average energy bills of £1,909 per year in the 12 months leading up to March 2022 – £600 more than the average household bill.
- 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.
We welcomed the UK Government’s cost of living support which is helping families of seriously ill children and young people. ch was announced in February, and which millions of households have already received.
We also welcomed the government’s Energy Price Guarantee, which froze average annual household energy bills at £2,500 for two years from 1 October 2022. The energy price cap – the maximum amount utility companies can charge customers on standard tariffs – had been due to rise to £3,549 from 1 October for households in England, Scotland and Wales.
However, the freeze only applied to the unit costs of energy, and is not a cap on overall bills. Households that use a lot of energy will still pay more.
We have warned that much more is needed to help families of seriously ill children afford the extra energy they need to keep them alive. One-off payments help but are not enough to address the long-term challenges that seriously ill children and their families face. We are joining with Contact and other disabled children’s charities in calling on the UK Government to go further by exploring the idea of social tariffs as a long-term solution to reducing energy bills for household with high energy usage due to disability. We are also joining Marie Curie in asking for better access to rebate schemes so that families of children and young people who need palliative care are not paying for the cost of running medical devices.