Disabled households are forced to switch off life-saving machines rising energy bill push thousands of families into a debt crisis.
A survey of nearly 4,000 families with critically ill children found that 39 percent had cut back or stopped using essential equipment. This was three times more than the last time Contact, a disability charity, conducted the survey in March.
The charity warned that winter looked “extremely bleak” for households paying extra operating costs for life-saving devices. Many also need to keep their homes heated to help people with chronic conditions. It said parents skipped meals and racked up debt in an effort to keep the flow going.
Running vital equipment such as fans, adjustable beds, ceiling lifts, wheelchair chargers and suction pumps costs families with sick children £1,596 a year more than the average household, according to Contact.
It estimated this figure had risen by nearly £600 since April amid rising energy costs.
Amanda Batten, from Contact, said disabled households faced “impossible choices”.
Ms Batten said: “It affects the health of disabled children and puts pressure on already overburdened NHS services.
“Families are caught between a rock and a hard place. They cannot get better paying jobs because many have given up their jobs to take care of their children and they cannot further reduce energy consumption because this puts their child’s health at risk.”
From the families forced to cut back or stop using essential equipment to control costs40 percent said it had worsened their child’s condition.
Taran, who did not want his last name published, takes full-time care of his two-year-old daughter Skye, who has chronic lung disease, pulmonary hypertension and complex medical needs. Due to the energy crisis, the family is in debt.
He said: “I have not paid the electricity bill for two months now. I have no idea what to do.
“I can’t take Skye off the ventilator. I can’t give her oxygen, but I can’t afford to use the equipment that keeps her alive. It is scary. Skye can’t be in a cold house. If she gets pneumonia, it’s life-threatening.”
Two-thirds of disabled households are worried they won’t be able to afford to heat their homes this winter, according to research from disability charity Scope, and half are worried about paying for food.
Some disabled households were entitled to a payment of £150 towards Government subsistence in Septemberbut this was not enough to cover rising bills, charities have warned.
Contact has called for disability benefits to be doubled and paid again next year. It has campaigned for more support to help with energy costs for families who cannot access NHS medical grants.
Scope’s James Taylor said the helpline was “flooded with calls” from desperate households.
Mr Taylor said: “We have heard from so many people with disabilities that they have to choose between being warm or powering life saving equipment. Parents of disabled children who have to skip meals so their children can eat.
“This is an emergency for people with disabilities. The government must take control of this situation and act now.”