Cork father waiting two years for autistic son to access Camhs services among those to attend protest 

Families join the Every Child matters disability services campaign to protest outside Leinster House, about the access to children’s disability services . Picture: Sam Boal/Collins Photos

A Cork father whose autistic son has waited two years for services and mothers whose children with disabilities are self-harming joined a protest for better care at the Dáil on Tuesday.

Families travelled from around Ireland to support the Every Child Matters campaign.

Harry Stone turns nine next month and lives with significant disabilities.

His father Kenneth said: “I’m here today because the HSE won’t invest in my son’s future. They won’t improve his quality of life.” 

Harry was approved for Child and Adolescent Mental Health Services (Camhs) two years ago but “he still hasn’t entered the door", said Mr Stone.

Kenneth Stone from Ballincollig, Cork, who travelled to Dublin to protest at the lack of services his son Harry, almost 9.

“I spoke with the HSE liaison officer about this, and she said he won’t enter in the near future because they have such a staff shortage inside there.” 

The family also struggled to secure an assessment of need for Harry despite statutory timelines set out in legislation.

“We had to involve a legal team twice because the timeframe was breached,” Mr Stone said. 

“The report arrived and it was full of errors.” 

He said the services statement which followed the assessment left him “very disappointed”.

“You’re still actually fighting for the services. Then the child is waitlisted for services,” said Mr Stone. 

“That’s very hard for a parent because there’s no start date and that leads to regression as well."

Mr Stone said Harry had been waiting two years to see a dietitian because the post remained vacant.

He said he had stepped back from his work as an electrician to care for his son and was forced to pay for private therapy. 

Sessions can cost between €120 and €140 each.

Mr Stone said families had little choice but to use private providers because public services were unavailable. 

"Those companies can charge what they want," he said. "They know we can't get the service anywhere else."

Mr Stone also said more attention needs to be paid to the pressures faced by siblings of children with disabilities.

“They’re not getting a look in at all, they’re getting no supports either,” he said. 

“They find it the hardest in a family. My other child is 11.

“Those children are just trying to cope. They see what’s happening.” 

Meath woman Mandy Clarke co-founded the Every Child Matters campaign with Bernie Coffey last June.

“My own daughter has autism. She’s 11 and is continuously being let down by services,” Ms Clarke said at the protest.

“We knock at every door, there is nobody opening the door to us. They pass us onto the next service.” 

Her daughter is under a children's disability network team but staff shortages have left the family feeling alone.

“She has become quite aggressive. She is self-injuring, in and out of A&Es,” Ms Clarke said.

“She has continuous concussion from self-injuries, it’s fairly bad now. 

"We’re getting no answers, just ringing the whole time and getting nowhere.” 

She described how her daughter can be so distressed that the family have to plaster and repair walls every week. 

"She’s after putting her head through them.”

Ms Clarke called for better access to psychiatrists in Camhs and Camhs intellectual disability teams.

“She’s been on meds since April and no monitoring since June; that’s anti-psychotic medication,” she said of her daughter.

“She is seeing consultants, but they just pass her along to the next person.” 

Autism Rights campaigner Cara Darmody. Picture: Sam Boal/Collins Photos

Campaigners want more funding for children’s disability network teams, Camhs, as well as assessments of need. 

More than 1,100 people have backed an online petition by the group.

Organisers warned: "Across Ireland, families are being left in the dark, forced to watch their children miss crucial developmental windows because of severe service deficits and unmanageable waiting lists." 

The Department of Children, Disability and Equality was asked for comment.