TERMINALLY-ILL MAN FIGHTS FOR BENEFITS
OBE RECIPIENT FACES PAYMENTS REVIEW
THE terminally ill former principal of Tor Bank Special School has called for an overhaul of the benefits system.
Colm Davis is supporting a campaign by the Motor Neurone Disease Association (MNDA) aimed at reducing the trauma of those with the devastating condition when dealing with the welfare system.
It comes after the issue hit the headlines last week when a Belfast father told of his disgust that his cancer-stricken daughter was turned down for benefits.
Tom McWilliams said Roisin (28) was denied the financial support despite undergoing treatment for stage four Hodgkin’s lymphoma, and he branded the system “totally disgraceful and wrong”.
Mr Davis (59), who was awarded an OBE for services to special education last year, was diagnosed with motor neurone disease in May 2016.
He has spent £50,000 adapting his north Belfast home so he can continue to live there, but faces reassessment for Personal Independence Payment (PIP) next year.
The father-of-three was forced to retire from Tor Bank in Dundonald last October as he became increasingly incapacitated. Despite this, and the fact his condition will only get worse, Mr Davis will be forced to undergo reassessment for PIP, the state benefit replacing Disability Living Allowance.
Mr Davis said leaving his job was a huge blow.
He explained: “Shortly after I retired I lost my voice completely, and my ability to swallow was deteriorating rapidly.
“My energy levels, strength levels and breathing levels are also becoming severely affected. I had a gastric feeding tube inserted in March this year in anticipation of my feeding needs deteriorating further.
“Mobility-wise, I take longer walking anywhere and have a support for my right ankle to strengthen it while walking.”
Though he was successful in his application for PIP, he is facing reassessment next August.
Mr Davis’ wife Victoria is not entitled to Carer’s Allowance because she is working and earns over the threshold for entitlement.
“She’s extremely worried that she will have to give up work in the future to care for me,” he said.
“I’ve been lobbying to get this changed and to scrap the reassessment process but, disappointingly, because we have no Assembly and minister, nothing further locally can be done. We’re working with MNDA, Marie Curie and our local MPs to put pressure on Westminster to change it in England, and that will be transferred to here too.
“Regarding adjustments to the house, we weren’t entitled to any grants to put in a downstairs wet room in anticipation of my physical needs deteriorating and we’ve spent over £50,000 of my pension in making reasonable adjustments. I was just lucky I had a lump sum in my pension to be able to do that.
“People with MND and their families face a significant financial burden as a result of the disease. They can expect to pay £9,645 in increased living costs every year and on top of that they can also pay one-off costs in the region of thousands on equipment and other related aids.”
Mr Davis also hit out at the controversial six-month rule which means a consultant has to state that a person with a terminal illness will die within six months in order for that person to qualify for certain benefits.
SDLP MLA Nichola Mallon said: “The whole PIP system is cruel, but it is particularly cruel for people who are terminally ill.
“If you’re terminally ill and your life expectancy is greater than six months, but is maybe just a year, you have to go through an intrusive face-to-face interview and then maybe wait three months for a decision.
“People who are dying don’t have the luxury of waiting.”
The Department for Communities said it introduced new guidance this year which means those awarded the highest level of PIP and whose needs are expected to remain the same or increase will receive an ongoing award and be reassessed only every 10 years. However, this is only the case for anyone who has claimed since August.
It said the definition of terminal illness will remain in line with England unless the Assembly determines otherwise.