When Darragh Dooley turned four last week the celebrations were low key: a small party and a birthday cake shared with his grandparents and some of the children from his neighbourhood in Tramore, Co Waterford.
But ask his parents Louise and Dermot what the best birthday present their son received this year was and they will tell you that it came in the form of a nondescript envelope containing Darragh’s medical card.
It might be presumed by those unfamiliar with the system that Darragh – who has cerebral palsy and epilepsy, who has learning difficulties and is unable to talk, who has microcephaly, a condition which means his brain is not growing at the correct rate – would be automatically entitled to a medical card.
However, when his parents, both teachers, applied for a card shortly after their son’s birth they were refused. The refusal was on the basis that they were slightly over the threshold for the card, which is means-tested and not an automatic entitlement for individuals with specific illnesses.
The Jack and Jill Foundation has argued that the Government should fix the “broken medical card system” to allow children such as Darragh to receive a card automatically, arguing that this should be prioritised ahead of a free GP scheme for under-fives announced under the budget.
Unfathomable
It is a stance which Darragh's mother Louise Dooley, for whom the decision to refuse the medical card was unfathomable, agrees with.
“Surely a child like Darragh should qualify without having to jump through hoops, and without begging please,” she said.
“He is severely disabled. On a scale of one to 10, 10 being the worst, his neurologist rated him as a nine and told us that his life expectancy would be short.”
In his first year of life Darragh had 65 medical appointments, most of which were free through the public health system.
However, travel costs, overnight stays in Dublin, medication which, at that time, cost €120 a month and the fact that Louise could only return to work on a part-time basis, all added up.
'Begging emails'
While still adjusting to being a first-time-mother with a severely disabled baby prone to illness and epileptic fits, Ms Dooley spent part of her time writing "begging emails" to try to secure a medical card.
Eventually, when Darragh was 20 months old, he was granted it due to his exceptional medical needs.
The medical card meant the prescription costs were alleviated (although Darragh also qualifies for these under the long-term illness scheme) and that his GP costs were covered.
Free doctor visits are very important to the family: “He gets sick so fast and that’s why we need access to the GP because if he gets a chest infection, it can develop quickly into pneumonia . . . it’s just vital to be able to get to the GP in time.”
However, there was further disappointment for the family earlier this year when their renewal application was refused.
“I was just disgusted at that point,” said Ms Dooley. “It’s not as if Darragh had improved in any way shape or form and he still needed just as much care as before – and I thought ‘how can they do that?’.”
Again she fought to get the card; again she filled out the “really long and detailed form” setting out her son’s medical history while her husband contacted their local politicians to highlight their case.
Eventually a local councillor got in touch to say a medical card had been secured.
“It’s such a pity that that is what it took to get it sorted out,” she said. “Parents are exhausted from caring for their children at home and often don’t have the time or energy to fight to get what their children deserve.
“All severely disabled children should automatically be granted a medical card and that card should be issued for life.”
Asked about the extension of free GP care to under-fives, something which Darragh, who turns five next year, is unlikely to benefit from, Ms Dooley said she felt the Government “went about it the wrong way”.
“Children like Darragh should be cared for first before they give it out as a blanket gift to anybody under the age of five.
“Darragh’s life is limited so surely the Government should look after him and children like him for the time they are here.”
'Legal parameters'
When contacted, a spokeswoman for the HSE said the Health Act 1970 provided for medical cards on the basis of means, adding that the organisation "must operate within the legal parameters as set out in the Act".
“However, where a person’s income exceeds the income guidelines but where there is undue hardship, the HSE can apply discretion and grant a medical card,” she said.
The Department of Health reiterated this stance, adding: "The Government is committed to introducing, on a phased basis, a universal GP service without fees within its term of office."
However, chief executive and founder of the Jack and Jill Foundation, Jonathan Irwin argues that the medical card system "is based on an Act which is over 40 years old which says the financial situation of a family outweighs the medical needs – which to me is pretty frightening".
The organisation is calling for a change in the system which would see children with palliative care needs and those with severe disabilities being granted a medical card automatically
“This is very black and white: the child’s needs reign supreme,” Mr Irwin said.