• Published date: 05 December 2020
• Date: 05 December 2020

But the 9-year-old with the big, sweet smile is steadily bending an unco-operative body to his determined, sharp mind.

Earlier this year he learned to walk on his knees, and mum Sacha McCavana now has to call time on lounge mat wrestling and rugby, otherwise he’d go all day. Knee pads will be sewn into pants, to meet the rimu floorboards of their Palmerston North home. It’s progress, but should be greater.

Funded physiotherapy has been basic and fortnightly — okay for a hamstring strain, not a child yearning for more ability.

Other kids with cerebral palsy — an umbrella term for disorders affecting a person’s ability to move, due to brain damage in pregnancy or shortly after birth — get better support, not because of greater need, but how their disability was caused.

If injured in an accident, people get compensation and rehabilitation covered by ACC, which generally provides more generous support than increasingly cash-strapped health and welfare systems, relied on by those incapacitated by sickness or otherwise disabled.

The Weekend Herald has spoken to patients, health workers, advocacy groups and researchers who warn the gap is growing — and people in the bottom tier are suffering.

“There is gross discrimination, and ACC-covered children get access to better support,” says Brendon Bowkett, a lower North Island paediatric surgeon. “Rehabilitation services, and access to support and benefits, are far worse if the child is disabled due to disease. It is immoral, and an absolute disgrace.”

Growing numbers take gruelling legal action to get ACC cover, including Kainoa’s family — he was accepted in May, more than eight years after a claim was made.

Details are being worked out, but that’s opened the door to frequent and specialised physiotherapy, occupational and speech therapy, and better equipment, including possibly replacing his too-small wheelchair.

“What he’s had hasn’t been enough to get someone like my son up and walking. For years we’ve been asking if there are other physios in Palmy. The answer was always, ‘No, there’s nothing’,” says McCavana.

“Now, a physio has come to see me who specialises in this, and she hopes to get him up standing — they were here the whole time, but it wasn’t available unless you were covered.”

Kainoa loves burgers, WWE-style wrestling and tearing around with mates on West End School’s basketball courts (class photos are stuck to his bedroom wall, right by his pillow).

Using a walker, he took to the track at a recent athletics day, and when a carnival came to town he and his mum rode the carousel — video shows pure happiness on both their faces.

“The goal has always been that he could function in society, to the best of his ability,” she says.

“He’s determined. And that’s the thing; if he’d had that kind of support from the beginning, he’d be so much better off already — maybe standing, maybe walking.”

Division ‘impossible to justify’ The roots of that inequity reach to 1967, when a Royal Commission led by Sir Owen Woodhouse called for a new system to give proper care and support for the impaired.

“A man overcome by ill health is no more able to work and no less afflicted than his neighbour hit by a car,” the Woodhouse report concluded — but, given the reform’s “massive leap”, it recommended covering injuries as a first step.

ACC was born in 1974, and claims have since boomed to more than 2 million a year.

“The system has been gamed on all sides, to shift people into the system — claimants, treatment providers, lawyers, everyone involved ... it’s developed into an alternative to the public health system,” says Dunedin lawyer Warren Forster.

“If you don’t get ACC help, and your family can’t cope or doesn’t cope, or your partner leaves, or any of these other things happen, then you are really on your own. And that’s a hard place lots of New Zealanders have found themselves in.”

Forster will soon release research, funded by a prestigious Law Foundation fellowship, which will argue for, before 2040, a new system delivering equal, ACC-like support to everyone with an impairment, eventually expanding to a full health and social insurance model.

One funding option is to massively grow the more than $44b investment fund that generates about $5.1b of ACC’s total annual income of $9.6b.

How to meet the enormous...