New Zealanders affected by rare disorders share their struggles with education system at international UN-agency meeting

Two representatives from the rare disorder community in New Zealand are today participating in a UNESCO-led international meeting to discuss better inclusion in the education system for children living with a rare disorder.

UNESCO is an agency of the United Nations specialising in education, science, culture, communication and information. This is the first time they are hosting an event on rare disorders, with the inclusion of perspectives from families around the world being a top priority.

A pre-recorded video of New Zealanders Nikki Van Dijk and Mark Rogers will be shared at the meeting, outlining some of their own lived experiences with the education system. They will also be virtually present at the meeting to answer any questions.

Nikki Van Dijk, a 22-year-old University student, says she faced many challenges throughout her schooling due to the lack of awareness among teachers and peers around living with a rare disorder.

“I have Ehlers-Danlos Syndrome and Complex Regional Pain Syndrome, so trying to get through school was a bit of a challenge because nobody really understood what life was like,” says Van Dijk.

“My disabilities for a long time weren’t visible and when they were, they weren’t as people would expect.”

Mark Rogers, a father of a child with 22q deletion syndrome, similarly found difficulties getting the right support for his son and had to step in and take ownership of his son’s education, working with his teachers to tailor a curriculum specifically manageable for him.

“Doing the normal subjects for our child just wasn’t going to work at all, he’d switch off. So, we decided to make a curriculum for him based on some of the subjects that were already available. Also, we staggered his days a bit, some days he’d do a full day, some days he’d do a half day, just whatever was manageable,” says Rogers.

The UNESCO meeting comes at a time when the New Zealand Government has recently announced that it plans to overhaul the $1.2 billion special needs education system to improve how education is delivered to those with higher needs. The details are yet to be finalised, but are expected to be announced mid-2023.

Accessing the right supports can be particularly challenging for children affected by a rare disorder, as these conditions can often be invisible, sometimes even undiagnosed, and therefore do not fit a tick box for extra support, despite a clear need.

“What we see are too many children slipping through the cracks and not receiving the individualised support they need when they need it, because we do not have a system that recognises the added complexities of having a rare disorder,” says Rare Disorders NZ Chief Executive Michelle Arrowsmith.

“We would like to see those affected by a rare disorder recognised as a population group with evidenced needs, so that clear pathways of access, support and care can be developed, along with appropriate, flexible assessment models.”

Arrowsmith is pleased to see in the recent announcement that the Government will be prioritising inclusiveness in its overhaul of the special education system, involving families more in the decision-making around support requirements and providing extra training for teachers on working with disabled children so that they feel more confident teaching a diverse classroom.

“Children need to feel welcome and accepted in their class, and parents need to feel that teachers can recognise when a child requires a different approach to their learning. An inclusive approach is also hugely beneficial to the learning of every student in the classroom, as they come to appreciate diversity and understand that every individual is valued and has the right to participate and be included,” says Arrowsmith.

Nikki Van Dijk agrees. “Children and people with rare disorders have value within a space, and we can teach others just as much as we can learn.”