Together for Short Lives has welcomed the action set out by the Chancellor of the Exchequer in today’s (23 March) Spring Statement to alleviate the financial pressure on families. However, as the cost of living rises sharply, we call on the government to go much further to help families of children with life-limiting and life-threatening conditions.
Even before recent price rises, families with disabled children faced significantly higher costs compared to other families. Research by our partners 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.
Andy Fletcher, Chief Executive of Together for Short Lives, said: “The financial pressure on families of children who need palliative care is immense. The action taken by the Chancellor to double the Household Support Fund, cut fuel duty and increase the National Insurance threshold will provide some help for these families. However, with inflation forecast to average 7.4% this year and average households due to experience an increase in energy bills of nearly £700 from April, the Treasury must do much more to target those who need this support the most.”
“Ministers should increase benefits for disabled children and families so that they rise at the same rate as inflation. The government and energy companies should develop a range of measures to help families with disabled children with their higher energy bills, including by introducing social tariffs for disabled households. And ministers should also increase access to the Warm Home Discount Scheme and make households with disabled children automatically eligible. Without this, families caring for seriously ill children risk being plunged further into financial hardship.”