‘What's being done to children is cruel — you have no one to call’

Gary, Darragh and Alison Murphy. Darragh has had no public therapeutic services since he was in first class.

Children with disabilities’ lives are at stake due to cruelly insufficient services and their human rights are not being protected, the mother of a Cork teenager with autism has said.

Alison Murphy’s son Darragh, now 15, has autism and a mild learning difficulty.

He was denied a place in a special school for one year in Cork because of a shortage of places and has had no public therapeutic services — like occupational therapy (OT) or physiotherapy — since he was in first class.

When looking for help with her son’s care, Ms Murphy has no one contact to turn to in the HSE.

With Darragh facing into adulthood, his path is even more uncertain as what few supports he has now, such as a place in school, will disappear when he turns 18.

“Children’s lives are at stake,” she said.

“The minister [for disabilities Anne Rabbitte] herself admitted that our children’s human rights are not being protected.

"It’s a measure of a society how we treat our most vulnerable and what’s being done to our children is cruel."

Darragh was denied his right to start at a special secondary school because the places did not exist.

After hard campaigning by Ms Murphy and a group of determined, angry parents, a new school, Carrigaline Community Special School, was set up and Darragh eventually entered first year there, aged 14, last September.

The school will take 48 children this September, Ms Murphy said.

Ms Murphy is now the chairwoman of the school’s parents’ association.

“Now we have this wonderful new school with therapy rooms but no therapists. Therapists were removed from schools under the PDS [Progressing Disability Services] system and Carrigaline opened after the PDS system was introduced.

“Ideally schools would be given grants to hire their own therapists directly.

“The Department of Education is opening more special schools but the Department of Health now need to do their bit.”

She said that having therapists on-site in schools makes an enormous difference to children’s ability to learn, to their happiness, and to their ultimate progress and ability to function as adults.

“Darragh’s doing really well there and the staff there are incredible. But they need therapy supports.

"Occupational therapy is particularly important to children and teenagers like Darragh because it helps to relax and regulate them again if they get deregulated.

“And Darragh’s communication skills are not perfect, so having speech-and-language therapy would be of benefit too.

“Darragh’s behaviour is luckily very good but some children need psychological support too. It makes so much sense to have that in the school setting.

“Darragh had his last therapeutic intervention when he was in first class. He’s 15 now.

“And therapies make an enormous difference. They can change that child’s life.

“This is their chance to thrive. I just want Darragh to be as independent and good as he can be and having therapeutic input in childhood is vital to him being able to achieve that. He’s an amazing person and he deserves a chance.”

Although the HSE’s PDS programme was introduced to create a national, unified approach to delivering disability health services to children and teenagers, giving each child a clear pathway to the services they need, Ms Murphy said it has been a disaster for children with disabilities.

When Darragh was first diagnosed with autism, a social worker came to the family and “eased them into” their new reality. However, Ms Murphy said that this did not happen anymore and families now had no clear point of contact for their child’s care.

“The disability services before PDS were woefully underfunded, but at least you had someone to call. You could leave a message and someone would reply to you. Now you have no one and many children are waiting years for basic supports like speech and language therapy and OT.

Over Covid, no one got any input at all. Families were left alone.

Ms Murphy’s concerns have now shifted to what Darragh will do when he turns 18. Although he only started secondary school in September — one year late — he will still have to leave at 18 rather than staying to finish the year he missed.

“There’s no clear pathway for Darragh going forward. He’s 15 now but he’ll be out of school by 18 and he could age out without having any interventions.

“The only help I’m receiving is through charitable organisations that are not even Government funded. The Rainbow Club has been fantastic. It puts on sports camps, discos, a teen group. The Rainbow Club has opened up opportunities to him that he never had before.

“It’s given him a real quality of life. He comes out of sports camp on a Friday regulated and happy.”

An “accidental advocate”, Ms Murphy said that speaking publicly and sharing Darragh’s story has not been easy but she felt there was no other way to force change to make life better for her son and thousands of other children like him.

A meeting with Ms Rabbitte and 150 parents of children with disabilities in Cork last week was “very traumatic”.

“I cried after it. Hearing about children whose legs were being cut by leg braces that were too small. And children in wheelchairs that were too small. It’s horrific.

“I found it very hard. People are going through so much.

"We have to be these children’s voices. I’m a private person. But I’ve had to speak up for my son.

“She [Ms Rabbitte] does seem to be empathetic to our cause but something has to happen now.

“She did commit to a meeting with Carrigaline Community Special School and other special schools about reinstating therapies so hopefully that’s a start.

“I wrote to the Taoiseach Micheál Martin; Michael McGrath, the public expenditure minister; [and] Anne Rabbitte after the meeting about how cruel the current situation is for our children.

“It makes me angry. As one man said at that meeting the other night, when your child turns 18 if both parents are working, one will have to quit to look after their adult child because of the lack of services. If they do get into daycare, they’ll have to be around to drive them there and back.

“It was soul-destroying that no one from the HSE turned up. Someone has to be accountable for what is happening to our children.

“Darragh is a good kid. He’s quiet, he’s comfortable in his own skin, he doesn’t have behavioural problems.

“But because he doesn’t have behavioural problems, he’s not treated as a priority by services either. Because he’s good and quiet, he’s just forgotten about and ignored. But he needs and deserves care and input to reach his potential, to be able to live somewhat independently.

“Darragh will always be with us. He’s always going to be vulnerable, he’s not aware of the dangers in this world.

“But we want him to be as independent as possible. He’s a wonderful lad. I’d love him to continue in some school routine after he turns 18.

“A few years ago I felt very alone as a parent. You think you’re the only one fighting for this but now I see there are hundreds of others like me just in Cork,” Ms Murphy concludes.