Geraldine Renton is a parent and full-time carer for her son, Ethan (15), who is severely disabled and was diagnosed with Hunter Syndrome when he was four.
“Ethan would need everything from being changed, to feeding, absolutely everything. Ethan is currently losing his ability to walk, so he is very unstable,” Geraldine said.
Ethan's condition is terminal and gets worse with age, but she said she still receives letters from the Health Service Executive (HSE) asking each year if his circumstances have changed.
“There is no circumstances change, the only way anything is going to change is when he passes on. It is a tough thing to go through, it takes an awful lot of emotion out of you. It’s very dehumanising,” she said.
“If you don’t get the forms back in time, your grant and everything stops. It happened to me when I was in hospital pregnant with my youngest son.
“I was in hospital way longer than I thought I would be and the grant lapsed. When I got home from hospital, I had to try and fight to get my carer’s allowance back,” she said.
The Department of Social Protection processing times for carer's allowance grants and domiciliary care grant allowances have two of the longest waiting times. The domiciliary care grant is a monthly payment for children with severe disabilities under the age of 16.
The carer’s allowance is a monthly payment to those who care for disabled relatives at home.
Waiting time
According to Department of Social Protection figures from May 2017, the current average waiting time for applicants to be granted carer’s allowance is three months, and four months on average for the State domiciliary care grant.
Mark Ferguson and his wife Wendy care for their son Eric (3). Mark said the work carers provide is “completely undervalued” by the State.
Eric was diagnosed with an extremely rare severe disability shortly after his birth. “He’ll never walk, talk, sit or stand. He’s severely disabled in all forms,” Mark said.
Wendy cares for Eric, and Mark works as an electrician and the pair share care responsibilities for Eric during the night.
“Every moment we have is spent looking after Eric, Eric can go from quiet to stopped breathing in a matter of minutes. It’s 24 hours a day. The burden that it has and mental stress it has on the family, people don’t realise,” he said.
Mark recently led a successful campaign with two other fathers of disabled children that prompted Minister for Health Simon Harris to remove the income means test for medical cards for disabled children entitled to the domiciliary care allowance.
“Now we can look after Eric at home, which is where he should be. But there’s still more to do for carers,” Mark said.
Liam O'Sullivan, executive director of Care Alliance Ireland, launched National Carers Week on Monday. In its 11th year, it aims to celebrate the work carers do in Irish society.
“We do know that Ireland’s family carers save the State a lot of money by keeping dependent people well, at home,” Mr O’Sullivan said at the launch.
