- Ellie McDonald cannot eat or walk alone due to a rare genetic disorder
- Her mother applied for support ahead of her finishing special school
- But she was shocked to be told the teenager will have to undergo test
- They fear she’ll miss out on help in the months she now has to wait
- DWP say they will carry out the test as quickly as possible
The family of a severely disabled teenager who has the mental age of a five-year-old have been left furious after benefits officers demanded the girl be put through a fitness-to-work assessment.
Ellie McDonald, 19, suffers from the extremely rare genetic disorder called Chromosome 7 Deletion, which means she is unable to eat, sleep or walk without the help of mother Louise.
In preparation for Ellie leaving her special needs school, her mother and her full-time carer applied for employment support allowance (ESA) to replace their child benefit payments.
But the family were shocked to be told Ellie would need to be tested to rule out her being fit for work – a process Miss McDonald branded ‘bureaucracy gone mad’.
Louise McDonald is angry that her daughter Ellie – who has a mental age of five and cannot walk or eat without help – has been told she will have to undergo a fitness-to-work assessment
The family, from Bradford, West Yorkshire, have hit out the government’s refusal to realise that Ellie, who cannot read or write and needs around the clock care, is entirely unfit to work.
They will now have to wait up to a year to receive medical tests, in which time they fear they’ll miss out on around £200 a month they are entitled to.
Miss McDonald, 42, said: ‘Ellie is completely reliant on us – she is unable to do anything for herself and has been in care from birth.
‘Two weeks before she left her special needs school we applied for employment support allowance as we would no longer be receiving child benefit.
‘They told us she would have to have another screening process to rule out she is unfit for work – even though the doctor has sent a note to show how disabled she is.
‘We filled this form out asking what Ellie could and couldn’t do. It was a joke – just crosses in every box. Ellie can’t read, write, talk or even sleep without help.’
The teenager, who turns 20 next month, was born with part of a chromosome missing and has to be sedated each night due to the part of her brain which induces sleep being disabled.
She also lives with one kidney – meaning she is prone to frequent infections – as well as bowel and bladder paralysis and 70 per cent curvature of her spine.
Ellie, now 19, has an extremely rare genetic disorder which has left parts of her brain disabled
Miss McDonald applied for support for when Ellie leaves special school and was shocked to hear of the test
Miss McDonald, who lives with partner Ben, 38, and Ellie’s younger sister Megan, seven, and ten-year-old brother Joshua, added: ‘The system is too bureaucratic and it sees us as figures instead of people.
‘Surely anyone can see Ellie will never be able to be independent, let alone work. I know they only want to check to avoid fraud, but if you look fraud only accounts for one per cent of disability allowances.’
She added: ‘It’s a standard case of “computer says no” and it’s made things really difficult.
‘It’s a waste of public money and a drain on the NHS – they know of Ellie’s condition but will now have to conduct a series of degrading tests on her for the sake of proving what we all already know.’
The family receives £310 every four weeks for disability living allowance and £141 every fortnight for employment support allowance.
The family say she’ll continue to go to her day care centre after she finishes at her special school.
A DWP spokesman said: ‘No-one should doubt our commitment to ensuring that people who need an assessment get the best possible service and are seen in the quickest possible time.’
Miss McDonald says it should be clear to anyone that her daughter cannot work and has branded the demand she undergo the assessment ‘bureaucracy gone mad’