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About Us & RulesAva Jolliffe: Deaf, mute, wheelchair bound schoolgirl has carer's benefit cut after being told she's 'not disabled enough'
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Ava Jolliffe: Deaf, mute, wheelchair bound schoolgirl has carer's benefit cut after being told she's 'not disabled enough'
by Guest Sat Feb 21, 2015 3:29 pm
Ava Jolliffe, 8, needs round-the-clock care but her family received a letter telling them they weren't eligible for government help
A severely disabled girl who needs round-the-clock care has had her benefits taken away because her dad works in Germany.
Ava Jolliffe, 8, from Preston in Lancashire suffers from rare Brown-Vialetto-Van Laere syndrome and her mum, Laura, is her full-time carer.
The condition, of which there have been only 73 cases in 100 years, means that Ava cannot stand or walk without help, she is deaf, cannot speak, has limited vision and it will only get worse.
Her mum and dad, Graham, 45, and Laura, 43, are determined to give her the best life she can live.
But they have now been told the carer's part of Ava's Disability Living Allowance has been stopped, forcing them into a world of worry about what that means for her future.
Round-the-clock: Ava requires full-time care
The couple were initially told the cash had been stopped because Ava's disability was not considered serious enough to qualidy.
But later the Department of Work and Pensions said it was due to dad Graham working in Germany, with the DWP claiming that country is responsible. They added Ava should never have been given the carer’s portion of DLA in the first place.
Graham has worked for the same British company for 25 years, and when he was seconded to Germany the family went with him, but still spent a large amount of time in the UK.
Later Laura returned to the UK full-time will Ava and her 10-year-old sister Libby.
Laura, who cares for Ava round-the-clock, said: "They've got this completely wrong. Where Graham pays national insurance is completely irrelevant because this is not a national insurance-based benefit."
Frustrated with the response from the Department for Work and Pensions, Laura took to social media to share her story using a picture that read: "The DWP has withdrawn the DLA from my blind, deaf, mute, wheelchair user daughter.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."
Ava's story has since been seen by more than two and a half million people on Facebook.
Appeal: Laura's Facebook campaign has been seen by millions
She said: "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, who chairs the parent's association at Ava's specialist school, said: "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."
She added: "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."
But the carer's allowance, which works out at about £81 a week, is vital for Ava’s wellbeing.
Vital: Laura says helps fund important therapy for Ava
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Ava Jolliffe: Deaf, mute, wheelchair bound schoolgirl has carer's benefit cut after being told she's 'not disabled enough'
11:49, 21 February 2015
By Nicola Bartlett
Ava Jolliffe, 8, needs round-the-clock care but her family received a letter telling them they weren't eligible for government help
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A severely disabled girl who needs round-the-clock care has had her benefits taken away because her dad works in Germany.
Ava Jolliffe, 8, from Preston in Lancashire suffers from rare Brown-Vialetto-Van Laere syndrome and her mum, Laura, is her full-time carer.
The condition, of which there have been only 73 cases in 100 years, means that Ava cannot stand or walk without help, she is deaf, cannot speak, has limited vision and it will only get worse.
Her mum and dad, Graham, 45, and Laura, 43, are determined to give her the best life she can live.
But they have now been told the carer's part of Ava's Disability Living Allowance has been stopped, forcing them into a world of worry about what that means for her future.
Ava Jolliffe appeal Round-the-clock: Ava requires full-time care
The couple were initially told the cash had been stopped because Ava's disability was not considered serious enough to qualidy.
But later the Department of Work and Pensions said it was due to dad Graham working in Germany, with the DWP claiming that country is responsible. They added Ava should never have been given the carer’s portion of DLA in the first place.
Graham has worked for the same British company for 25 years, and when he was seconded to Germany the family went with him, but still spent a large amount of time in the UK.
Later Laura returned to the UK full-time will Ava and her 10-year-old sister Libby.
Laura, who cares for Ava round-the-clock, said: "They've got this completely wrong. Where Graham pays national insurance is completely irrelevant because this is not a national insurance-based benefit."
Frustrated with the response from the Department for Work and Pensions, Laura took to social media to share her story using a picture 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."
Ava's story has since been seen by more than two and a half million people on Facebook.
Ava Jolliffe appeal Appeal: Laura's Facebook campaign has been seen by millions
She said: "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, who chairs the parent's association at Ava's specialist school, said: "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."
She added: "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."
But the carer's allowance, which works out at about £81 a week, is vital for Ava’s wellbeing.
Ava Jolliffe appeal Vital: Laura says helps fund important therapy for Ava
Laura said: "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.
“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."
Laura, who was refused a carer’s allowance last year despite providing full time care for her daughter, says she feels frustrated that the family is being denied what they are owed.
She said: "Because Graham's working in Germany I'm on my own. I lost my mum to cancer in the summer last year, she was my wing woman, she was the woman who would have been by my side screaming and shouting so I'm very much alone looking after two children in this country."
Because the condition is degenerative it is not clear how long Ava will live.
Laura said: "Nobody knows, we've lost one of our BVVL children only last year.
"All we want to do is do what we can for her while we can do it. She's very funny, she's got a dry sense of humour, she's feisty, she's a little monkey. She's not intellectually challenged at all it's purely physical."
http://www.mirror.co.uk/news/uk-news/ava-jolliffe-deaf-mute-wheelchair-5198691#ICID
IDS should be put up against a wall, fire hosed down with icy water and then put out in a snow storm.
A severely disabled girl who needs round-the-clock care has had her benefits taken away because her dad works in Germany.
Ava Jolliffe, 8, from Preston in Lancashire suffers from rare Brown-Vialetto-Van Laere syndrome and her mum, Laura, is her full-time carer.
The condition, of which there have been only 73 cases in 100 years, means that Ava cannot stand or walk without help, she is deaf, cannot speak, has limited vision and it will only get worse.
Her mum and dad, Graham, 45, and Laura, 43, are determined to give her the best life she can live.
But they have now been told the carer's part of Ava's Disability Living Allowance has been stopped, forcing them into a world of worry about what that means for her future.
Round-the-clock: Ava requires full-time care
The couple were initially told the cash had been stopped because Ava's disability was not considered serious enough to qualidy.
But later the Department of Work and Pensions said it was due to dad Graham working in Germany, with the DWP claiming that country is responsible. They added Ava should never have been given the carer’s portion of DLA in the first place.
Graham has worked for the same British company for 25 years, and when he was seconded to Germany the family went with him, but still spent a large amount of time in the UK.
Later Laura returned to the UK full-time will Ava and her 10-year-old sister Libby.
Laura, who cares for Ava round-the-clock, said: "They've got this completely wrong. Where Graham pays national insurance is completely irrelevant because this is not a national insurance-based benefit."
Frustrated with the response from the Department for Work and Pensions, Laura took to social media to share her story using a picture 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."
Ava's story has since been seen by more than two and a half million people on Facebook.
Appeal: Laura's Facebook campaign has been seen by millions
She said: "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, who chairs the parent's association at Ava's specialist school, said: "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."
She added: "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."
But the carer's allowance, which works out at about £81 a week, is vital for Ava’s wellbeing.
Vital: Laura says helps fund important therapy for Ava
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Home
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Benefits
Ava Jolliffe: Deaf, mute, wheelchair bound schoolgirl has carer's benefit cut after being told she's 'not disabled enough'
11:49, 21 February 2015
By Nicola Bartlett
Ava Jolliffe, 8, needs round-the-clock care but her family received a letter telling them they weren't eligible for government help
1757 Shares
Share
Tweet
+1
VIEW GALLERY
A severely disabled girl who needs round-the-clock care has had her benefits taken away because her dad works in Germany.
Ava Jolliffe, 8, from Preston in Lancashire suffers from rare Brown-Vialetto-Van Laere syndrome and her mum, Laura, is her full-time carer.
The condition, of which there have been only 73 cases in 100 years, means that Ava cannot stand or walk without help, she is deaf, cannot speak, has limited vision and it will only get worse.
Her mum and dad, Graham, 45, and Laura, 43, are determined to give her the best life she can live.
But they have now been told the carer's part of Ava's Disability Living Allowance has been stopped, forcing them into a world of worry about what that means for her future.
Ava Jolliffe appeal Round-the-clock: Ava requires full-time care
The couple were initially told the cash had been stopped because Ava's disability was not considered serious enough to qualidy.
But later the Department of Work and Pensions said it was due to dad Graham working in Germany, with the DWP claiming that country is responsible. They added Ava should never have been given the carer’s portion of DLA in the first place.
Graham has worked for the same British company for 25 years, and when he was seconded to Germany the family went with him, but still spent a large amount of time in the UK.
Later Laura returned to the UK full-time will Ava and her 10-year-old sister Libby.
Laura, who cares for Ava round-the-clock, said: "They've got this completely wrong. Where Graham pays national insurance is completely irrelevant because this is not a national insurance-based benefit."
Frustrated with the response from the Department for Work and Pensions, Laura took to social media to share her story using a picture 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."
Ava's story has since been seen by more than two and a half million people on Facebook.
Ava Jolliffe appeal Appeal: Laura's Facebook campaign has been seen by millions
She said: "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, who chairs the parent's association at Ava's specialist school, said: "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."
She added: "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."
But the carer's allowance, which works out at about £81 a week, is vital for Ava’s wellbeing.
Ava Jolliffe appeal Vital: Laura says helps fund important therapy for Ava
Laura said: "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.
“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."
Laura, who was refused a carer’s allowance last year despite providing full time care for her daughter, says she feels frustrated that the family is being denied what they are owed.
She said: "Because Graham's working in Germany I'm on my own. I lost my mum to cancer in the summer last year, she was my wing woman, she was the woman who would have been by my side screaming and shouting so I'm very much alone looking after two children in this country."
Because the condition is degenerative it is not clear how long Ava will live.
Laura said: "Nobody knows, we've lost one of our BVVL children only last year.
"All we want to do is do what we can for her while we can do it. She's very funny, she's got a dry sense of humour, she's feisty, she's a little monkey. She's not intellectually challenged at all it's purely physical."
http://www.mirror.co.uk/news/uk-news/ava-jolliffe-deaf-mute-wheelchair-5198691#ICID
IDS should be put up against a wall, fire hosed down with icy water and then put out in a snow storm.
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