Not worth educating? The challenge facing seriously sick kids

Lachie* has been on the brink of starting school three times. At three years-old, the little boy was diagnosed with leukemia. Overnight the family's world was blown apart, but they were reassured by doctors telling them to expect that after two years of treatment, he would be in the 80 per cent who recover fully.

Except he wasn't.

At the end of two years, as the family excitedly planned for him to begin his school days, there was more bad news. Things hadn't worked as planned; there had been a recurrence and he would need a bone marrow transplant and other treatment over the next 12 months.

This was the start of a gruelling medical rollercoaster for Lachie and his family, which was to include two more recurrences of the cancer, a second bone marrow transplant, extensive radiation therapy, chemotherapy and experimental drug treatments. In the midst of that was a third false start at school.

It was also the beginning of their battle to keep him educated, despite his stop-start schooling.

At 16, Lachie is now fully recovered from the cancer. For most of the past six years he has been at school full time. Of course, most of his peers have been at school, uninterrupted, for at least 11 years. That big difference has taken a toll.

Jane* says her son is slowly catching up in areas such as literacy and science, but in social skills, confidence and general independence, he is far behind his classmates.

Over the years there has been "wonderful kindness" from friends, family and the school, but also huge gaps and ignorance. In most children's hospitals, there are hospital-schools for when children are well enough to do some study - to stop them from falling too far behind their peers, as well as taking their minds off the illness and treatment. But this can also can end up being yet another thing for parents to juggle.

"When you've had two or three hours sleep and someone fronts up at the bedside with a little booklet for you to do with your son, it can just be too much," Jane says.

Teachers and schools have at times done "beautiful things" for her son, and Jane will be forever grateful, but there have also been misunderstandings and bad luck along the way.

Lachie was often at high risk of infection and had to be kept apart from other kids. When he could be with his classmates at school, he was also often exhausted and unable to manage full days.

"People say, 'just enrol them in distance education', but is an isolated kid who can't function normally really the best kid for distance education? They desperately need some social interaction. I would have loved to be able to Skype into the classroom."

An estimated 60,000 kids around Australia are missing out on large blocks of school due to significant illness or injury, (not including kids with mental health issues). For some, hospital visits or time recovering at home mean a block of weeks or months away from the classroom. Others may face regular absences over their whole school life.

There is a bureaucratic name for it: "non-negligible school absence", but behind that jargon is kids battling diseases such as cancer, cystic fibrosis and epilepsy, shuttling between hospitals, home and school, and often travelling interstate and between cities for treatment.

Parents say these children are slipping through the cracks, with neither disability, health nor education agencies taking full responsibility for keeping them connected to learning and their peers, and poor co-ordination between the services involved.

"These poor children are often falling flat onto the pavement because no one is stepping forward to catch them", says Stephen Bartos from the research collective ARACY.

Megan Jackson, lead researcher on ARACY's Australian first study into inter-agency collaboration around sick children and education, , says it is telling there is no official statistic for the number of children in this position. Just as different departments fail to categorise or count these kids, many are unsure that it is their job to educate them.

"The responsibility for educating children at school lies with schools, the responsibility for determining whether a child is well enough to go to school lies with doctors and the responsibility for getting kids to school lies with parents," Ms Jackson says.

While most children's hospitals around Australia have schools for children who stay a long time or must be there for regular treatment, their approach varies hugely and their involvement mostly stops when children leave hospital. And with advances in medicine, many more children are surviving critical and chronic diseases and being sent home to recover after shorter stays for procedures such as bone marrow transplant and chemotherapy.

In an added layer of complexity, many critically ill children travel interstate for regular treatment, meaning responsibility for their education crosses not just different departments but also state jurisdictions.

Ms Jackson suspects many families of seriously ill children give up trying to keep them educated, overwhelmed by the stress of dealing with the illness, and unable to take on the role of co-ordinating the various bodies who may be able to provide learning support.

Her research will look at the model of having a lead worker for families, to co-ordinate their child's learning and keep them in touch with school and peers, for example through Skype calls.

Megan Gilmour, whose son missed more than 18 months of school due to a bone marrow transplant, says support for children recovering at home is a matter of good (or bad) luck, depending on the attitude of individual schools and teachers.

"We're often not at home, we're in hospitals, we're interstate, we're at appointments and we're under huge stress having a seriously ill child."

Ms Gilmour is also frustrated by the resistance from many schools to using technology such as Skype and real time digital connection to keep kids connected to their classrooms, teachers and peers.

"This is not at all about bashing up schools or teachers, it's about getting the specific policy and standards in place from education departments so that schools know what they have to do."

Ms Gilmour co-founded the parent lobby group Missing School in 2012 after realising that her struggles to keep her son connected to education were not unique. "We had done everything we could to keep him educated through his illness but he was losing hope. We had to show him that he had a future, that he was worth educating".

She says seriously ill children who miss a lot of school are "invisible".

"One of the first questions we asked was how many kids are missing school because they're seriously ill, that was unclear. We asked what is available to them from education departments and schools, who parents in this position should call, that was unclear. There is no consistent model, no best practice ??? the governance is absent".

Parents argue that children are not just missing out on learning, they are also missing out on crucial social and emotional development and the general confidence and wellbeing that comes from staying connected to their peers - everything from rough and tumble in the playground to teens hanging out with mates. Research shows these gaps have short and long term, negative impacts on their development.

"When my son returned to school he was a mess. He'd gone from being a high functioning student to someone who could barely function in the school environment. There was the trauma from what he had been through medically but there was also the effect of social isolation and being apart from his school and his peers," Ms Gilmour says.

Many children who return to school also struggle with the long-term effects of treatment and side effects of medication and may be easily tired, vulnerable to infection and illness and even have lower cognitive function due to some invasive treatments such as radiation therapy on the brain.

Parents who contact Missing School are often grateful for the support of charities such as Ronald MacDonald House, who help with support such as tutoring or transport to school. But Ms Gilmour argues it ought not be the role of charities to ensure children stay educated, a legal responsibility outlined in both state and federal legislation.

"We don't want to be talking about one-off programs or charities here and there. This sits with education departments, it has to be stable and scalable, it has to be governed by all the checks and balances."

A spokesman for the Victorian education department said the department provides funding to five hospital-based education services that provide in-patient and out-patient support for seriously ill students and the government recently announced a new $6.8 million Monash Children's Hospital School.

He said schools supported students through illness in may ways including wellbeing officers, school nurses and, for students with complex medical needs, customised support plans and additional assistance.

Missing School is supporting the ARACY research, which will define what should be happening in practice for supporting seriously ill children absent from school. The parent lobby group is also calling for policies backed by resources and clear arrangements between education and health. It is pushing for real-time digital connection in classrooms.

Ms Gilmour says at the heart of the issue is the community's ethical responsibility. "We're putting these kids through a lot of pain and suffering to save their lives, and saving lives is absolutely the right thing, but if we don't prepare them for a future, what are we doing to them. We're turning out a lot of people who are mended but still suffering."

*Names changed at their request

This story Not worth educating? The challenge facing seriously sick kids first appeared on The Sydney Morning Herald.