Together for Short Lives’ and Contact’s open letter to the Conservative leadership candidates

BACD has co-signed with senior leaders from disabled children’s organisations this open letter calling for urgent financial support for families of seriously ill children:

As a group of charities that represent and work with seriously ill and disabled children and their families, we ask you both to agree a package of financial support for these families. This is needed now, before the Conservative leadership election concludes.

Like many across the UK, these families will be alarmed at the news that Cornwall Insight is now predicting the energy price cap to rise by 81% in October and then again by a further 19% in January. 

However, families of disabled children will incur even higher energy costs. Research shows that families with seriously ill and disabled children are already paying almost double that of an average UK household on their energy bills. 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.

Elisa from Bournemouth is one of the thousands of children across the UK for whom families need to pay even higher energy bills just to keep them alive. In May, the Daily Express delivered a letter from Elisa’s Dad, Dan McEvoy, to 10 Downing Street asking for urgent help from ministers. We welcomed the UK Government’s cost of living support package that followed, which is helping families of disabled children and recognises their unique situation. While one-off payments are having an impact, we are very concerned that they are not enough to address the additional challenges that disabled children and their families will face this winter. 

We are therefore calling on the government to go further by providing an energy assistance payment for families of seriously ill children who are unable to access medical grants from the NHS, and to double the £150 disability payment when it is paid in September to reflect their higher household and energy costs. 

We support calls for an emergency uprating of benefits in line with current inflation rates, which should come into effect in Autumn. We would also be interested in exploring the idea of social tariffs as a long-term solution to reducing energy bills for household with high energy usage due to disability. Time is short for these children, some of whom are seriously ill and unlikely to reach adulthood. Their families cannot wait long for the government to act.

A PDF of the signed letter can be viewed below.

Open letter to Conservative leadership candidates 26 August 2022
British Academy of Childhood Disability is registered in England and Wales under charity number 1177868
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