The recipient of the Carer of the Year award for 2015 says her young daughter continues to miss out on preschool because the family cannot secure a Special Needs Assistant (SNA).
Jennifer Carroll’s two children Alex (8) and Ava (3) both live with Osteogenesis Imperfecta, a genetic disorder which causes bones to break and fracture easily.
Ms Carroll, who is a single mother, must bring her children to in Crumlin six times each month for treatment and check-ups.
Despite the fact that she also struggles with the same disorder she says she faces difficulties in receiving even the most basic of assistance in her role as a full-time carer.
"Of course it would be nice to have more help, definitely, but that's life really and you get on with it," she told The Irish Times.
She continued: “It was actually quite difficult to get an SNA for Alex. At the moment I can’t get one for Ava, she should be going to preschool right now and I can’t get an SNA for her at all.
“It’s hard because she’s missing out on it . . . with Alex, when he started school he didn’t have the social skills that kids had that went to playschool.”
Ceremony
She was presented with her award during a ceremony on Wednesday which was organised by the Carers Association, and afterwards she criticised the level of support provided by the Government to people in her situation.
“I don’t think they recognise the hard work that goes into full-time care for a family member. It is hard, it is draining but you get on with it because it’s what you have to do,” she said.
According to the association, there are more than 187,000 family carers across Ireland whose dedication saves the State about €4 billion every year.
As such, the group is campaigning for more robust supports to be put in place for carers, and wants to see official statistics on the number of carers introduced in the Central Statistics Office’s quarterly household survey, so more reliable information can be gathered.
Among the 22 award recipients was 12-year-old Donagh O'Sullivan from Cork, who looks after younger brother Diarmaid (11) who has severe autism and a rare disorder called Ehlers-Danlos Syndrome.
These difficulties mean Diarmaid is non-verbal and has difficulty walking due to a collagen deficiency in his skin, but his older brother helps by communicating on his behalf when he is thirsty, hungry or whenever other needs arise.