Together for Short Lives
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The cost of living crisis for families of seriously ill children

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.
  • 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.

We welcomed the UK Government’s cost of living support which is helping families of seriously ill children and young people. The package , announced by Chancellor of the Exchequer Rishi Sunak on Thursday 26 May, is providing the following:

  • A one-off payment of £150 in September for people who receive disability benefits including Disability Living Allowance and Personal Independence Payments.
  • A doubling of the Energy Bills Support Scheme to a one-off payment of £400; this had initially been announced as a £200 loan, but will now be made as a grant, which will not be recovered through higher bills in future years.
  • £650 one-off Cost of Living Payment for those on means tested benefits.
  • £500 million increase and extension of Household Support Fund to support people who need additional help; this will be extended from this October to March 2023.
    This support is also in addition to the £150 Council Tax rebate for households in England in Council Tax bands A-D, which was announced in February, and which millions of households have already received.

One-off payments are helpful, but we are concerned that they are not enough to address the long-term challenges that seriously ill children and their families face. We are joining with Contact in calling on the government to go further by:

  • increasing the £400 energy grant for disabled households to reflect their higher usage (or introduce social tariffs for disabled households
  • the government to look again at proposed changes to the Warm Home Discount Scheme in July to ensure it all disabled people claiming DLA and PIP are eligible . Currently, the changes do not take into account the impact of disability on energy costs.
  • increase disability benefits in line with current inflation rates. Although they were uprated in April, this was based on September 2021’s inflation figures. Due to a huge surge in inflation in recent months, families are actually getting a significant real terms cut in financial support.
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