Mum of disabled Hawke's Bay boy's fight to get him a classroom chair

Skylah-Rose, left, and Zayden, right, who have SMA, pictured with their sister Chloe and mother Rachel Shaw. Photo / File

Teachers of a disabled Hastings 10-year-old had no option but to lay out a yoga mat for him to lie on in class as his mother fought for three years to get an appropriate chair funded for him.

The Ministry of Education this week accepted it took too long to respond to the needs of Zayden Shaw and the repeated requests of his mother Rachel Shaw.

She says the admission is just another example highlighting how hard she has to advocate for "basic human rights" for her children with disabilities.

Rachel is a mother of three kids, two of whom have spinal muscular atrophy (SMA), a rare disorder that progressively destroys motor neurons.

Zayden, who has SMA II, uses a wheelchair and is unable to move his hand to feed himself, and Skylah-Rose, 8, who has the slightly less debilitating SMA III, can walk short distances but is mainly in a wheelchair.

Rachel told Hawke's Bay Today that for at least three years until the end of 2020, Zayden lay on a yoga mat on the Frimley School classroom floor, "like a baby at a daycare centre", isolated from his peers and schoolwork, while she advocated for him to have a fit-for-purpose chair at school.

As well as SMA, Zayden has complex regional pain syndrome (CRPS) - he is in constant pain and needs breaks from his wheelchair, so the family needed an adequate chair he could use in the classroom.

She says the school is "amazing", but the time it took for the Ministry of Education to fund the chair for him to sit in at school was unfair.

"Ministry of Education and Ministry of Health were sort of back and forth with each other not wanting to pick up any funding."

At first lying on the mat didn't bother Zayden, but after a while he refused, instead opting to stay in his wheelchair where he could be at the same height as his peers.

But this meant he was in so much pain that most days he would have to be picked up from school at lunchtime to get a break from the wheelchair at home, Rachel said.

Their physio helped them go through a private fund to get a chair for seating while at school.

A meeting with Ministry of Education (MoE) staff eventuated and Shaw told them she would go public with the issue.

She was told Zayden's case met the criteria but one of the conditions of provision was that MoE would take possession of the privately funded chair.

At the end of last year a chair was funded and the other chair remained at school for Skylah, but the stress and "countless" appointments took a toll.

It took three years of "countless meetings" and stress for Rachel Shaw to get a chair funded for her son Zayden, who has SMA, to use at school. Photo / Warren Buckland

MoE deputy secretary sector enablement and support Katrina Casey said three years was "too long" for the family and Zayden to get the right seating solution to attend school comfortably.

"We've been in touch with the family to confirm that they have what they need and to acknowledge and accept their complaint that three years was long.

"We will continue to work alongside the Ministry of Health to make sure we are responding to this young student's specific needs as he grows up."

Rachel has also been fighting for about a year to get funding for a proper tray for Zayden's wheelchair as his current one falls, needs to be taped in place, and causes him anxiety that it may fall on him, triggering a pain flare-up.

Zayden also struggles with mental health to the point of suicidal thoughts, and getting him adequate mental health help through Hawke's Bay District Health Board also took about three years.

Rachel said there had been "six-month waits" trying to get an appointment, even after he had been assessed after a call to the crisis team.

After a psychologist tried mindfulness with Zayden, which didn't work for him, they were discharged.

About four months ago Zayden also got a psychologist, which she said worked well with him, and he has been helped with medication through Starship, but the process of getting him help was "exhausting".

"I feel like some days I spend more time advocating for my kids than I do spending quality time with them," Shaw said.

A Hawke's Bay DHB spokesperson said anyone who needed crisis mental health support was assessed immediately and referred to wherever is appropriate for them to be seen or cared for.

"People are booked in for appointments when they have been assessed as not urgent, with the aim for them to be seen within four weeks.

"Sometimes these appointments get delayed due to staff sickness. In 2020 some appointments were further delayed because of Covid-19.

"Hawke's Bay's mental health team is busy but dedicated and they are sorry the family of this patient has experienced the issues they have.

"As the team had not received a formal complaint from this family they were unaware of this. However, the Mental Health management team is happy to meet with Zayden and his mother to discuss their experience and work together to resolve this."

Rachel is also fighting for Spinraza, a drug funded in many other developed countries that could help Zayden and Skylah-Rose but is not funded in New Zealand.

Many families move to Australia to access this treatment for their children, and Shaw says she would if she could.

She is one of many who have asked people to sign the www.sign4life.nz petition started by Patient Voice Aotearoa to reform Pharmac and double its budget.