The mother of a child with epilepsy is struggling to find child care after a daycare center told her they were unable to undertake the specialist training required to administer medication for her son.
- Leo requires medication administered via a nasal spray to treat his epilepsy seizures
- Workers caring for Leo are required to undertake training with the Epilepsy Foundation
- Epilepsy is a diverse group of complex brain disorders resulting in brain seizures with about one in 200 Australian children living with the condition
Single mother Libby Gott told ABC Radio Melbourne her son, Leo, was offered a place at Journey Early Learning in Alphington knowing he had epilepsy and agreeing they would undertake the training before he was due to attend.
After Ms Gott accepted the place and paid a deposit for Leo’s care, he was diagnosed with ART-16 syndrome, a rare genetic disorder that means Leo’s 16th chromosome is missing, and is believed to be the underlying of her son’s epilepsy.
Ms Gott said she contacted Journey Early Learning upon receiving the diagnosis.
“I called the center to tell them, and they said … we’re just going to book you in for your orientation,” Ms Gott said.
Medication requests forgotten
Leo requires medication administered through a nasal spray to prevent seizures.
Ms Gott said she had tried to ensure the specialist arrangement would be in place in time for Leo’s first day.
“I said I just want to make sure the epilepsy first aid is going to be done … and he’s got his medication,” she said.
“They were like ‘Yeah, we’ve got a management plan’.”
But Ms Gott said when she dropped him at the center for his orientation, staff told her they “didn’t know” about his medication requirements, and the training requirements meant the center would not be ready to care for Leo until November.
She said she went to the center on August 16 and followed up with a phone call on August 17 to confirm if they would be able to get everything ready by September 17, and she said the center said yes.
“I was a bit gobsmacked really,” Ms Gott said.
“I was due to leave him there the next day, which I can’t do, because his medication requires a trained person,” Ms Gott said.
She is now unsure when she can return to work, and said an alternative childcare center would not be able to take her son until January.
“I was meant to return on October 10 … so I put off going back to work for now,” Ms Gott said.
“It’s just me, I have to work out what I can live on.”
‘Disappointing,’ says Epilepsy Foundation
Chief executive officer of the Epilepsy Foundation, Graeme Shears, said they had worked hard with schools and early education providers to ensure training was accessible.
“If someone approached us today, we’d be saying they could complete that October,” Mr Shears said.
“If the organization had come to us, they would have had everyone trained, assuming there are no problems with the management plan, but generally two to three weeks is the maximum time frame from getting an inquiry until someone completes their training.”
Mr Shears said epilepsy was still not well understood and could often be more “complex” than anaphylaxis or asthma management.
“There are lots of different presentations and types of epilepsy, but that doesn’t mean we don’t have the means now to support people,” he said.
“It’s disappointing that, despite the availability of training, it hasn’t happened.”
More time needed
In a statement, Journey Early Learning said the time frame from when Ms Gott first the center and the date Leo was meant to start attending had enough time for the staff to undertake the training courses, which not taken between three to five hours to complete.
“This is not a case of we weren’t willing or able to accommodate Leo,” the statement said.
“It was more we needed to ensure we had everything in place to fully meet his medical needs.”
However, the statement said it did not contact Epilepsy Australia regarding Leo’s management until 10 days prior to Leo’s start date.
“At all times, Leo’s welfare was at the center of our efforts. We have started to form a connection with Leo and would be happy to welcome him as soon as possible — when we are prepared for his needs,” it said.