An inspirational teenager with cerebral palsy has warned politicians that their jobs are on the line if they don’t radically improve services and supports for people with disabilities.
Katie Byrne, 15, from Cobh in Cork, was one of the speakers at a Families Unite for Services and Support (FUSS) rally on Friday to highlight the failed rollout of the Progressive Disability Services system.
Katie, who thanks to a massive fundraising drive underwent life-changing surgery in the US which allowed her to walk, told the FUSS rally in Cork that she hasn’t had physio in two years and is tired of being ignored by the government and of being told ‘no’.
“To every politician out there responsible for health — you need to step up and do what you are elected to do,” she said.
“We need extra help to be able to live our lives to the best of our abilities and when you don't do what you are elected or employed to do, you are falling every one of us."
She said if the politicians were in any other job at which they were failing they would be fired on the spot.
“Remember this — people like me will be old enough to vote one day and we will be among the people who will decide if you keep your job or not,” Katie added.
Rally coordinator Rebecca O’Riordan’s voice cracked with emotion as she sent a clear message to the Government on behalf of the families gathered at the rally.
“They can’t keep doing this to our children. Together we can do it — so now we march, and we’ll keep marching and we’ll keep giving out, and we’ll keep making a fuss, for as long as it takes because we will not be silenced,” she said.
The 150 or so people who attended the rally on the Grand Parade in Cork, one of a number around the country, heard heartbreaking story after story from parents of children with disabilities and with various additional needs, and from children themselves, about their years-long waits for assessments, about chronic shortages of equipment and therapists, about cutbacks in some therapy sessions and difficulties accessing others, and about the constant exhausting and grinding battle each of them faces while engaging with the HSE to get even the most basic services and supports.
Speakers said they felt invisible, ignored and worthless trying to negotiate a system that just can’t seem to cope with the demand for support and services, and which in some cases, just doesn’t seem to care about them.
But as they set off to march through Cork city, they all spoke too of their determination to fight and continue campaigning for change.
Julieanne Cuneen, from Upper Glanmire, was there with her son, Liam, 15, and his assistance dog, Skye. Julieanne, a wheelchair user, is Liam’s sole carer.
“We really feel abandoned by the government and HSE,” she said. “We feel very alone, very neglected. Liam needs occupational therapy, speech and language therapy, a whole suite of services, but he’s just not getting them.
“He’s getting older and will eventually need adult services but there is nothing there. I have no respite, no home support, no home help — nothing. I basically look after him on my own 24/7. I have nothing. That’s just the way things are.
Gavin Owens, from Carrigaline, was at the rally on behalf of his sons, Daithí, nine, and Tomás, eight, who have autism. He said the boys got their diagnosis privately and have never been assessed by the HSE.
“They have had no intervention from the HSE. We got three two-hour parenting sessions — that’s been the extent of our interaction with HSE, apart from countless phone calls and emails,” he said.
“We absolutely have to get the numbers of therapists in the HSE way, way up.
“The impact of early intervention for our kids is enormous — especially in my sons’ cases, it’s the difference between them living independent adult lives or always being under our care. That to me is a basic human right.”
Leanne Kearney, from the Old Youghal Road, said her children, Meadbh, 15, and Cillian, 14, who both have autism need proper access to a raft of services.
“Our children have been left abandoned by the government. No matter how much we beg, cry, email, call, text, we are being ignored,” she said.
Orla Christian from Cobh, told the rally that her son Michael, nine, is one of four children in Ireland with the rare genetic condition, L1cam, that he has hydrocephalus, epilepsy and has an intellectual and physical disability.
Yet he has received just one physical therapy and one speech and language therapy session in the last five months, she said.
Despite Michael getting a communication device with eye gaze technology in September 2021, he’s not getting the benefit from it because his teachers and SNAs have yet to receive training on its use.
“By caring for my child in a loving caring home, I am saving them millions, Start by giving our children their basic human right of needs and services now so they can flourish and become the adults they are trying to become.”