Government's disability spending changes 'threatens the lives of children', says public health expert

Whaikaha/the Ministry of Disabled People published new rules last week, which restrict disability spending.
Whaikaha/the Ministry of Disabled People published new rules last week, which restrict disability spending. Photo credit: Getty Images.

A public health professor has slammed the Government's change of rules for disability funding last week.

It comes after Whaikaha the Ministry of Disabled People published new rules on disability spending on its website last Monday, without consulting the community.

Following the announcement, the community urged Disability Issues Minister Penny Simmonds to rethink her "thoughtless and reckless" changes.

According to an AUT academic, one of the rule changes would block carers and patients from buying CGMs (continuous glucose monitors) using their disability allowance.

Public health researcher Dr Catherine Crofts said the Ministry's move is "incredibly short-sighted".

"CGMs are not consumer electronics… [but are] life-saving medical devices which enhance quality of care. And there is no other system that reduces parental or carer stress like CGMs."

CGMs are small patch-like devices that look like a patch on your arm - and they're often paired with automatic insulin pumps.

The technology monitors blood glucose levels continuously throughout the day and can send alerts to diabetics through a phone app.

Dr Crofts said the move by Whaikaha "threatens the lives of children" living with type 1 diabetes, but also "threatens the health of their parents".

"People with type 1 diabetes have very unstable blood glucose levels and sudden or undetected changes in their blood sugars can have life-threatening consequences," she said.

Extremely low blood sugar can lead to seizures, brain damage, or death within hours - known as Dead in Bed syndrome, Dr Crofts added.

Before CGMs became available, diabetics (or their caregivers) had to prick their finger and draw blood to check blood glucose 24/7.

Most people are younger than 15 when diagnosed, according to Dr Crofts, so their carers often have to manage their children's glucose levels - especially at night - meaning they're often sleep-deprived.

"CGMs are vital health monitoring devices for any person with type 1 diabetes but especially children," said Dr Crofts.  

CGMs cost between $2500 and $5000 per patient.

"If this burden must be absorbed by the family, given the Government's crackdown, the cost will be significant for many families," she said.

But the cost isn't just financial.

"Without CGMs, carers of children with type 1 diabetes have a much greater risk of increased stress and poor sleep quality leading to burn-out, mental distress, fatigue, accidents, or employment challenges.

"The New Zealand Government needs to be increasing access to CGMs, not removing it."

She said removing access to some disability funding would only widen inequities and place more strain on whānau at a time when they didn't need it.

Penny Simmonds, Minister for Disabled People, said last week that Whaikaha could've consulted better with the community. She repeated her sorrow again on Saturday.

"Neither Whaikaha nor I are happy with the way this has occurred and so we are very clear that we will have to do much better in the future," she said.

And in an unprecedented move, Cabinet has told the Minister it will now sign off on the Ministry's major funding decisions, rather than the Minister herself.