Severely disabled teenager told she 'must prove disability'

Jessica Madden has very limited speech and a severe brain disorder

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The parents of a teenager who has been severely disabled since birth have told the BBC their daughter has been asked to prove that she is not fit for work.

Jessica Madden, 19, finished her education at Glenveagh Special School in south Belfast in June.

Her parents said the authorities have written to her, saying that she has to serve a probationary period before she can get full adult disability benefits.

They family said they were "insulted" and "offended" by the letters.

Jessica's parents, Martine and Brian Madden, said their daughter has a severe brain disorder that means she has never and will never be able to work.

As a child, she received full disability living allowance (DLA), but now, as she leaves full time education, she must reapply for the adult form of the benefit.

Her parents said they have been told that Jessica must be assessed like everyone else, and must wait 13 weeks before she can get access to the full disability benefit.

"Jessica has been severely disabled from birth and has received full DLA from birth, what more does she have to prove?" Mrs Madden said.

"Thirteen weeks to qualify she is disabled - that's an insult. Come and live with her for a day and they'll see she's disabled. You don't need 13 weeks, we've lived with it all her life."

form Mrs Madden said the bureaucracy was putting families of disabled young people under "incredible stress"

The teenager's mother said she has been frustrated by official responses when she raised the issue with the authorities.

"When I've asked questions such as; 'This is nonsense, why does she have to fill these forms in? It's only a matter of a quick phone call to a GP', I've been told that's the way it is and its bureaucracy, the same for her as for everybody else.

"They also appointed an assessor to come out and have an interview with her to encourage her back to work. Well, I'd like to be a fly on the wall at the interview," Mrs Madden said.

The family said Jessica will receive standard sickness benefit during the probationary period but added that the bureaucracy is putting them and other families in their position under "incredible stress".

Mr Madden said some of the letters that had come to their house were addressed to Jessica but had "referred to her on four occasions as a he, a male".

"I just feel, when I read some of the letters, offended by them, if that makes sense? Because as my wife has said, we don't need anyone to tell us that Jessica will never work," he said.

"That's a hard truth for us to say - we know she won't work. For someone to come out and assess her to work, to tell us that we have to prove over a 13-week period that Jessica is suitable to receive this special sick pay, to us is absolutely insulting and it's hard to take in."

The Maddens are on the board of governors of Glenveagh Special School and said they are aware of other parents of disabled teenagers who are in the same position.

Karen Hall from Disability Action said this time of year was particularly difficult for disabled young people and their families with the transition from school to further education or into day activities.

"Employment and Support Allowance (ESA) replaced incapacity benefit in 2008. Under that, everybody has to go through this 13-week assessment," she said.

"We know it is really stressful but when people get advice and support from organisations like ourselves and other agencies, then it helps.

"What will happen is that you fill in a form and you may be called for a face-to-face meeting. In the case of Jessica, we would hope that would not happen.

"I would say that when you fill in the form, make sure you get in as much medical evidence as possible.

"Come to organisations like ourselves or any of the independent advice agencies to get that level of support. It is quite a lot to find your way through and the form filling can be difficult."

In a statement to the BBC, the Department for Social Development said: "All those claiming Employment and Support Allowance undergo an assessment phase which lasts for 13 weeks, during which time the benefit is paid at the basic rate.

"If you have an illness or disability that severely affects your ability to work you will get increased financial support and would not be expected to work.

"Any entitlement to the higher rate would be backdated. We cannot comment on individual cases however Social Security staff will be contacting this family again to offer support and advice."

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