Electricity keeps Elisa alive ...but how do we pay for it?
THE parents of two disabled girls live in constant fear because they rely on electricity to keep one daughter alive – and their cash is running out as energy bills rocket.
Dan and Maiju McEvoy’s nineyear-old girl Elisa has cerebral palsy and requires round-the-clock care, much of which is provided by equipment that uses a significant amount of power.
Their other daughter, six-year-old Melody, has tuberous sclerosis, and they can no longer afford to give her any treats to brighten up her life.
As the cost-of-living crisis grows, the family has resorted to eating tinned food, switching the heating and lights off and avoiding any costly social gatherings.
Dan, 46, said their energy bills have risen by £450.
The anxious father, from Bournemouth, added: “Our main worry is the electricity price rise because nearly all of the equipment Elisa has, to keep her stable and essentially alive, is powered by electricity.
“We don’t go out or socialise at all now. We don’t use our car anymore because we need to save the petrol we do have in case of emergencies.
“And we now eat mostly tinned food because it tends to work out cheaper and lasts longer than fresh produce.”
Elisa’s equipment cannot be turned off, with some appliances required to be on 24 hours a day.
Her parents have made all the cuts they possibly can, including sending Elisa to school with battery packs and chargers in an attempt to cut back.
The revelations come as research from charity Scope found that disabled people are facing a £1billion deficit in support due to rocketing living costs. It means nearly three million face a £367-a-year shortfall in much-needed help on average.
Unlike other families who may be able to alter how they use energy, the McEvoys cannot.
The Daily Express and Scope are calling for urgent financial support to prevent more disabled people from being plunged into poverty.
Our End Disability Bills Crisis campaign aims to raise awareness of the issue.
The plight of Dan and his family was highlighted when TV host Susanna Reid grilled Boris Johnson recently on the Good Morning Britain show.
Susanna asked what Dan and his family should cut back on.
In response, the PM said: “We are looking at particular arrangements to support those who may be using dialysis machines or who may have high requirements of electricity because of their medical conditions. I totally understand that hardship.
“I know this may sound frustrating because people think, ‘We need money now’.”
But that is little comfort for Maiju, 34, and her husband. Dan added: “We feel invisible, forgotten and often ignored. Sometimes we feel like we’re being penalised for having a disabled child that we want to care for at home.”
Andy Fletcher, chief executive of the Together For Short Lives charity, said: “The financial pressure from rising energy and living costs on families caring for disabled children is at crisis point.
“Many families struggled financially before the huge price hikes.
“Many children with life-limiting
conditions are totally dependent on life-sustaining equipment to keep them alive.
“Families caring for the UK’s most vulnerable, disabled and seriously ill children are being failed.
“Ministers must act as a matter of urgency by increasing benefits for disabled children and families. The Government should develop measures to help.
“Families caring for seriously ill children risk being plunged into financial hardship.”
Fazilet Hadi, head of policy at Disability Rights UK, said: “Before the current cost-of-living crisis, disabled people were already having to find nearly £600 a month more than non-disabled people to cover extra expenses such as running medical and mobility equipment.
“People were already having to choose between heating and eating on a given day.
“Now, many have to choose which days of the week to give up both entirely.
“It sounds unbelievable because it should be unbelievable.
“But it’s the reality for thousands of disabled people who can no longer afford the very basics that we need to survive as human beings.
“The Government must foot the bill for these terrifying shortfalls for disabled people.”
A Government spokesman said: “We know that living with a disability can impact on living costs, which is why financial support is available to those with disabilities, or for those with caring responsibilities.
“We are taking decisive action to help more than 27 million households with rising energy costs through a £200 reduction on bills this autumn.
“Our £1billion household support fund is helping the most vulnerable with essential costs.
“We urge people to check whether they are receiving all of the benefits to which they are entitled, and to be aware of the wider support this opens up.”