Ava Jolliffe needs round-the- clock care, is profoundly deaf, certified blind, has to use a wheelchair, can’t feed herself and her eyes shake permanently.
But because the Preston eight-year-old’s father works in Germany, and pays the equivalent of National Insurance there, the Government say she is not entitled to the care component of Disability Living Allowance (DLA).
Instead, bosses at the Department for Work and Pensions (DWP) have told the family they should be claiming help from the German authorities.
Ava’s distressed mum Laura, of Garstang Road, Barton, near Preston, today told of her disbelief at the ‘farce’ with the DWP.
They had initially told the upset family that Ava’s disabilities did not meet the conditions to receive the allowance.
They now say that was an error, but will still not pay out the care money because of where her father works.
Laura, 43, said: “We are exhausted, mentally, physically and emotionally, we have nowhere to turn. I have cried so much over this. We are trying desperately to get some help.
“We just feel sick with it. Ava can’t read, she can’t write, she uses sign language, she has no opportunity to fight for herself.
“We are a positive family, we just want what is best.
“They are financially limiting us as a family which means with the things she enjoys, that physically help her, we have to say, ‘Can we afford it?’”
The Jolliffes were living in Germany because of dad Graham’s job with BAE Systems. It was there Ava was diagnosed with a life-shortening neuro-degenerative disorder called Brown-Vialetto-Van-Laere syndrome
In November 2013, Laura came back to Preston with daughters Ava and Libby as Ava was ‘educationally failing’ and Laura’s mum was poorly. Graham stayed on in Germany, as his contract there runs until July.
Ava, who attends Royal Cross Primary School, is so poorly she now needs her own personal assistant at school.
When Laura first applied for Disability Living Allowance in April 2014, the application was knocked back, but was then reconsidered and awarded.
Since then the highest amount of the DLA care component – around £80 a week – was paid. Then Laura, who cares for Ava full-time, was advised by Lancashire County Council to apply for Carers’ Allowance.
Again the request was knocked back and went to a reconsideration panel. It was refused again so Laura pressed ahead with an appeal.
But in a shock turn this week, she received a letter to say Disability Living Allowance had been withdrawn.
The letter from the DWP said in order to get DLA, Eva must have a disability which means she needs:
l Help with personal care for about an hour
l Needs frequent attention with bodily functions or continual supervision both day and night to avoid substantial danger to herself or others.
The letter – which the DWP has since said was an error – concludes that Eva’s needs ‘do not satisfy these conditions’, despite her needing 24-hour-a-day care.
It added: “For children under the age of 16, any attention, guidance, supervision or watching over they require must be substantially greater than that required by children of the same age and without disabilities.”
Laura explained: “The carers allowance team had been talking to the disability allowance team and at that point they decided to rescind Ava’s DLA.
“They said they were unhappy with their original decision. They have not given us a proper explanation as to why.
“They said Ava is not disabled enough. They just don’t seem to know what they are doing. The whole thing has become a farce. The final kicker for us was they said we have to reapply for Ava’s DLA.
“They are implying it is Germany’s responsibility. She was born in Preston. She is a British citizen
“We have just had such a time of it, we have been through hell and back with her we have come back to our own country and we have had the rug pulled from under us.”
Laura added: “The £80 makes a difference. We take Ava to disabled swimming, to therapy, all the things that keep her active, they all cost money.
“Having a disabled child isn’t cheap – so many of her medicines are not covered by the NHS. If she wants something, as best as we can we provide it.”
A DWP spokesman said: “Miss Jolliffe was originally awarded the care component of DLA in June 2014 in error. As her father works in Germany and pays the equivalent of National Insurance contributions there, Germany is the state responsible for providing that benefit.” He added: “The higher rate of the mobility component of DLA is still being paid as this is a non-contributory benefit and therefore the UK is responsible for paying it under EU regulations.”
The DWP said in line with the relevant European Regulation, it will be forwarding on the claim to the German authorities, but the family would not have to pay back any DLA already granted in error,