A family says that the government has cut the caretaker benefits for their eight-year-old daughter, who is severely disabled, because they don't think she's disabled enough.
According to The Mirror, eight-year-old Ava Jolliffe suffers from Brown-Vialetto-Van Laere syndrome, a rare disorder that has confined her to a wheelchair and has caused her to be deaf and mute. Ava’s parents Graham, 45, and Laura, 43, say that the government has cut their Disability Living Allowance, at first claiming it was because the little girl wasn’t disabled enough, but later changing their story and saying it was because Graham works in Germany.
“They've got this completely wrong. Where Graham pays national insurance is completely irrelevant because this is not a national insurance-based benefit.” Laura Jolliffe said.
Out of frustration, the UK mom decided to post a picture on social media of her holding a sign that reads, “The DWP has withdrawn the DLA from my blind, deaf, mute, wheelchair user daughter. She is just 8 years old and has a rare life-limiting neurological disorder. SHARE if you think this is wrong.”
Quickly, the family’s story went viral, and now, Laura explains why she decided to post the picture.
“I did that picture because I just thought at the heart of this is an eight-year-old severely disabled child, a British citizen who lives here, who goes to school here, who is being managed by the NHS, who is being cared for by her mother solely, her school has to have a one-on-one carer with her every minute of every day, who cannot even toilet herself, can't feed herself, can't read, can't write and hasn't got a voice and this is at the heart of it,” Laura explained. “This is my daughter who has fought for her life, who has come through the other side, they told us 'pick a gravestone, pick a churchyard' and then people just do this to her, she's eight, she can't even speak for herself.
“I do about 128 hours care with my daughter - that equates to 57 pence per hour so I'd like to find somebody else who will care for a severely disabled child who needs to have an interpreter (because she uses British Sign Language) for the bargain price of 57 pence,” Laura continued. “We've never claimed a benefit in our lives, we've taken nothing, we've adapted the house for our daughter without taking a penny from the government.”
The caretaker benefits, however, are reportedly essential, and as Laura explains, they go to pay for her daughter’s therapy.
“It pays for her to have rebound therapy, special trampolining therapy, it pays for her to have disabled swimming lessons, these are all trying to keep her physically mobile and improve core muscle strength. It pays for medicine which we can't get on the NHS,” Laura said. “That money also pays for specialist books because she can't see properly, it pays for specialist apps on the computer it's really important to her it's not a 'nice to have.’ I don't get paid a wage anymore, we're a single wage family and to be able to give her the life she deserves that money is critical.”
Despite her plea, the Department for Work and Pensions apparently isn’t backing down.
“Miss Jolliffe was originally awarded the care component of DLA in June 2014 in error,” a spokesperson for the department said. “As her father works in Germany and pays the equivalent of National Insurance contributions there, Germany is the state responsible for providing that benefit.”