A Northumberland mum will be glued to the her laptop on Monday, as she bids to win extra money for disabled people to help pay their energy bills in the cost of living crisis.
Rachel Curtis, who lives in Ellington with her husband Marc and five-year-old daughter Betsy, raised her petition - entitled 'Provide an energy grant to people with a disability or serious medical condition' - earlier this year, and it will be debated by MPs alongside another by disabled student Abigail Broomfield, of London, entitled ‘Make people on disability benefits eligible for the £650 one off payment'.
She is hoping her endeavours will result in an extra £650 cost of living payment for the 5.5m people claiming PIP and Employment Support Allowance (ESA) during the ongoing crisis.
Read more: Call for DWP to end 'limbo and stress' for disabled benefits claimants
The petitions were launched through the Petitions Parliament website and gained more than 40,000 signatures. Although debates are usually granted when petitions reach 100,000 signatures according to information of the Gov.uk website, Marsha De Cordova MP, a member of the Petitions Committee, has been asked to open a debate. The Government will also send a minister to respond .
'I am looking forward to watching the debate about my petition," said Rachel, 40, who is a full-time carer to Betsy, who has Down's Syndrome. "It is vital that our Government hear how millions of disabled people, and carers are struggling with devastating levels of poverty.
"In particular, I am keen to hear what the minister for Disabled People has to say regarding the fact disabled, or chronically ill, people can't afford to run medical equipment they have been prescribed. The cost of energy crisis is not simply a matter of 'putting on a jumper' for us. It's a matter of life and death."
Rachel founded community project Northern Lights to support families who have a child with a disability, and also suffers from Myalgic Encephalomyelitis (ME) herself. Her husband, Marc, 43, suffers from sleep aponea, a condition which causes breathing to stop and start while asleep.
"There is a whole raft of equipment disabled people need to help them live their daily life and very little help to pay for the electricity to run it," said Rachel. "The only machine you can get an energy rebate for is an oxygen concentrator. The cost of running everything else - stairlifts, hoists, dialysis machines, monitors - has to be met by the person who is relying on these things to improve their quality of life, or in extreme cases, keep them alive. That's not right.
"People claiming Personal Independence Payments (PIP) got an additional £150 last year, which although was good because it acknowledged that people with disabilities can have higher energy costs, it bore no resemblance to the costs that were being incurred. Some equipment such as ventilators or pressure pads may have to be run 24 hours a day and people are struggling to afford the cost.
"We are moderately disabled household but we have to run a CPAP machine overnight for Marc and keep the heating on a constant 18C for Betsy as she is prone to respiratory infections. A lot of the advice on how to keep warm does not work with people with disabilities. It's not use putting an extra jumper if you are breathing in cold air. We just have to keep the house warm and worry about the bills later. Others are not so lucky and are running up debts just to stay alive. I would like to see the energy companies taking the initiative to help people with disabilities - they can afford it."
In a blog post for We Are Carers, Rachel says that millions of disabled people and carers were already struggling financially due to the “discriminatory system that forces carers into poverty, coupled with the cost of living rising and our Government increasing outgoings like our council tax.”
“It is not right that people living with conditions that require energy should be punished for it, and sometimes face unmanageable debts with energy companies. What a horrendous situation to face. If some people don't run their ventilator, CPAP machine or feeding pump they will die. Our Government must help people afford to stay alive,” she said.
Rachel's petition has been supported by We Care, an award-winning grassroots organisation run by carers for carers. We Care's Katy Styles said: "Rachel is part of our campaigning carer community and we've been involved since Rachel submitted the petition to the petition clerks. We’re carers ourselves and quickly understood that our families would be adversely impacted by rises in energy bills. We knew that people, organisations and politicians didn’t understand that we have no choice but to keep the heating on, or use vital equipment every day that our loved ones need to live their lives. It isn’t a case of putting another jumper on for us. Or turning the thermostat down. No energy saving tips help us. We’ve been campaigning for four years on issues impacting carers and their families, like this one on extra energy support."
The Department of Work and Pensions (DWP) previously said: “Ahead of the planned debate, the Petitions Committee is keen to hear your views on the topics, and considering both petitions received over 40,000 signatures of support between them, that could be a lot of feedback for MPs to take on board - and could help influence change."
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