Ellington mum steps up her fight to secure better financial deal for families with disabled children

Rachel Curtis, mum to five-year-old Betsy, who has Down Syndrome, has spent years calling for full-time carers to get the cash they deserve.

She is also fighting for a focus to be put on the NHS and other vital services as people with disabilities face more struggles each year.

After launching a petition called ‘Provide an energy grant to people with a disability or serious medical condition,’ which received more than 16,000 signatures, the issue was discussed in the House of Commons.

Speaking about the debate, Rachel said: “Obviously the petition got loads of signatures and the government did recognise that disabled people do have higher costs than other people. A lot of good comments were raised.

“We are going to follow up on that because I didn’t really pick up any comments of substance, there was nothing said about what the government are actually going to do.”

As well as launching the petition, Rachel is also heading down to London to meet with MPs next week at an event to mark National Carers Week. The event will be filled with charities who represent carers and Rachel will be representing We Are Carers, a charity which works with unpaid parent carers.

Speaking about the event, Rachel said: “I want to speak to MPs about the struggles parent carers face. A lot of us are women who have had to give up their jobs – I used to be a secondary school teacher but I couldn’t possibly do that with all of the challenges that come with having a disabled child.

"It’s across the board. It’s not just that there’s no social care, it’s also that they’ve cut funding to the NHS so just to get a doctors appointment I could be on hold for two hours. Going to A&E and seeing a sign saying there’s a six-hour wait when your child can’t breathe is absolutely terrifying.

“It’s really, really stressful having a disabled and chronically ill child at this point in time. It’s just horrendous the situation that families like mine are in.”

When Rachel had Betsy she went from having a teacher’s salary to living on a carer allowance – which is around £71 a week, which equates to around 41p per hour for a child who needs 24-hour care.

Rachel added: “Our services are gone, they’ve stripped away our services. Education, I need to talk to them about that because they’ve stripped the funding to the bone so it’s really difficult to get disabled children into education. That’s a breech of their human rights.”

On top of campaigning, Rachel founded Northern Lights, a community group to support families who have a child with a disability. The group supports parent carers who struggle to seek respite and have faced challenges getting their children into education.

To help Rachel on her mission to give disabled people the same opportunities as others, she is asking people to contact their MP to invite them to the carers event on June 6 in parliament.