Election 2024: Disability — 'It’s all empty promises. Why must we rely on charities?'
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Emily Healy’s daughter Brooke is a gentle, sweet toddler, living with a rare disease that has turned the family’s days into an all-consuming search for help.
A hairdresser in Limerick, Emily even chats to clients about her daughter’s care, and they swap tips on private therapists. Despite efforts from some HSE staff, almost all of Brooke’s care in her two years of life has been private.
Emily's joy in Brooke is clear as she says: “She is so happy, just gentle and sweet and so social. Everyone who meets her dotes over her.”
The little girl has Cornelia de Lange Syndrome, a developmental disorder that affects many parts of the body.
“The more we do for her now, the better the outcome will be when she is older,” Emily explains.
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“At the moment she is still not walking, she has never crawled. She does get around on her bum but she’s been on her bum since before she was one. It’s getting to the stage where she’s getting swelling in her joints.”
Emily points out they were “really lucky” to get a diagnosis early, thanks to an “unbelievably helpful” cardiologist at University Hospital Limerick. She referred them to CHI at Crumlin for genetic testing.
“It is heart-breaking, you don’t know what is ahead really,” she says.
“Especially when it’s rare there are not a lot of people around you can turn to. I think a lot of people have that shock with autism but it is a lot more common as well.”
Their GP referred them to a HSE physiotherapist in Nenagh who Ms Healy also praises for trying to help them.
Realising Brooke needed specialist care, this physio referred them to a children’s disability network team. The wheels stopped turning then.
“The children’s service don’t even have an occupational therapist on their team at the moment,” Emily explains in frustration.
While waiting, she and her husband Martin have turned to private therapists.
Physiotherapy can cost from €75 for 30 minutes up to €120 depending on the therapist, even though they do not see differences in the care.
They found a speech & language therapist at €60 for 30 minutes, although she adds: “She usually does an hour, she’s lovely.” A paediatrician appointment set them back around €200, only to be told Brooke has reflux.
After months of worry about feeding problems, they went to a private clinic called the National Tongue-Tie Centre near Clonmel.
“They told us she had a tongue-tie, a lip-tie and two cheek-ties. If we had caught those early, we could have been charged maybe €600 for them, but because we caught them so late and over an age limit, she had to be sedated. It cost us over €3,000,” she said.
Although her husband has health insurance through work, this was not covered. The family are supported by Rare Ireland and Enable Ireland.
Ms Healy has already taken this up with canvassers, asking why she is relying on charities instead of the State.
She wants to know why colleges are not funded to train more therapists and why the HSE cannot hire to fill the gaps in the teams. She says:
“It’s very frustrating. I don’t feel it is a priority for anyone really unless you have kids with disabilities yourself.”
Laura Egan, co-founder of Rare Ireland said: “We have children in membership who have never received the therapies they require to reach their potential.
“As a charity, every year we have more parents coming to us seeking support in paying for these therapies privately as they are not available in the public system”.