Ava Jolliffe suffers from a rare degenerative disorder known as Brown-Vialetto-Van Laere. According to the Mirror, the 8-year-old girl is deaf, mute, and unable to stand or walk without assistance. Her vision is also quite limited and expected to get worse over time. However, the local government still insists her condition isn’t severe enough for disability benefits. The decision was reportedly made because of the father’s work location as opposed to their legal residence.
Although they reside in the U.K., the government’s defense is that her benefits should come from Germany since that’s where her father, Graham, is employed. Another considerable factor is where Ava was diagnosed. The family reportedly moved to Germany for a short period of time.
According to Ava’s father, she was initially receiving benefits in Germany because of the move. However, they were informed those benefits would end once she returned to the U.K. Now, they’re facing another problem because the U.K. government insists she should still be claiming benefits from Germany regardless of their current residence in the U.K. Her father recently took to Facebook with a brief explanation about the debacle.
“Ava is becoming a bit of a political ping pong. Before we left Germany we were told she could not continue to claim support once she had returned permanently to England,” Graham explained via Facebook Now after more than a year in the UK the DWP say its not their problem so talk to Germany… they can’t both be right. And in the meantime Ava is the one being penalized….”
The child’s mother, Laura Jolliffe, has been forced to care for her daughter around the clock since her Disability Living Allowance has been discontinued. She also took to social media out of frustration to voice her concerns and disapproval of the government’s decision.
I am a little girl who is 1 in 3.5 Billion – literally – I am rarer than an honest politician! A x
— Ava Jolliffe (@AvasAppeal) April 12, 2012
She posted a picture via Facebook holding a sign that read, “The DWP has withdrawn the DLA from my blind, deaf, mute, wheelchair user daughter.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.”
During a recent interview, she explained why she opted to post the picture and share Ava’s story with the world. She also shared details about how difficult it has been to care for Ava with little assistance since their benefits have been cut.
“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.
“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. 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.”
Do you think Ava Jolliffe’s disability benefits should have been taken away? Share your thoughts.
[Image(s) via Facebook, Ava’s Appeal]