Christina Laurence worries a lot about her son Luke. He's eight years old and severely disabled. Luke can't hear and is unable to speak.
She could handle all this except he also has a medical condition – ketotic hypoglycemia – which presents with alarming symptoms.
It requires regular monitoring of his bloods, a role which would ordinarily be carried out by a clinician or nurse.
In theory, the special school he attends, St John of God's in Islandbridge, Dublin, has a nurse for children like Luke who have severe and profound learning disabilities. However, the nurse is assigned to just one pupil who needs constant nursing care.
As a result, Ms Laurence , a mother of three, has to regularly attend the school to check on his blood sugar levels.
“The big danger is that he gets sick very quickly and needs to go hospital... often, he’s in hospital once a month. The teaching staff at the school are very good, but they aren’t trained and you couldn’t expect them to monitor him.
“He only has one functioning kidney, which adds to the danger. It would give me great reassurance if there was a nurse available to check on his sugar levels. I’d know that he’s ok.”
A State advisory body for special education has echoed her concerns, warning that vulnerable children with life-threatening conditions are unsafe and at risk due to a lack of nursing supports in schools.
Many children with complex medical conditions – such as epilepsy or cardiac problems – now attend schools and may require the administration of medication through catheters and tracheostomies.
We are worried children's lives may be at stake if something goes wrong
However, teachers and special needs assistants, who do not have clinical training, end up supporting many of these pupils.
‘Matter of urgency’
The National Council for Special Education told the Department of Education that schools needed support to handle these situations “as a matter of urgency”.
Calling for immediate action, Fianna Fáil’s education spokesman Thomas Byrne TD warned the State could be liable for the consequences of any medical emergencies in schools, given that State officials have warned about the urgency of tackling these issues.
Ms Laurence said there were many other vulnerable severely disabled children at her son’s school who also need nursing support.
The parents’ association at St John of God’s Special School, Islandbridge in Dublin, says it is concerned about the lack of supports for vulnerable children.
Catherine Lyons, the association's secretary, said many children with complex needs should have access to specialist help.
“We are worried children’s lives may be at stake if something goes wrong,” Ms Lyons said. “Many have very complex medical conditions which require expert support and supervision.”
Therapeutic supports
More broadly, Ms Lyons says many children who are in vital need of therapeutic supports do not receive any one-on-one speech and language therapies in the schools. Many are also on long waiting lists in the HSE for such support.
She said early intervention is crucial in fulfilling the potential of young people with special needs. However, many parents feel their children have been forgotten about by the system.
The school did not respond to a request for a comment, though it has previously conceded that it is not in a position to provide all children with the level of service they need.
As for Luke, his mother wants him to have the best opportunity possible to develop his communication and live as independent a life as possible.
“He is struggling with developmental delays. I think he’s on the autism spectrum, though he hasn’t been formally diagnosed,” she says.
“He’s great boy. He loves water balloons and bubbles. He’s quite social, despite everything. He’ll try to play with other children, but it’s hard for him to communicate.
“I just want him to have the opportunity to develop as best he can. That’s all we’re looking for.”
