Autism NZ calls for respite care overhaul after Donella Knox case

Autism New Zealand chief executive Dane Dougan says the country's respite care should be improved.
FAIRFAX NZ

Autism New Zealand chief executive Dane Dougan says the country's respite care should be improved.

An autism advocacy group and a workers' union have called for a respite care overhaul after the murder of an autistic woman by her mother in Blenheim.

Autism New Zealand has criticised "the system" after Ruby Knox's death raised concerns over her support networks.

Chief executive Dane Dougan​ said there should be more respite carers qualified to care for people with Ruby's level of need.

Ruby Knox, left, with her mother Donella, the week before Ruby was killed.
SELINA POWELL/FAIRFAX NZ

Ruby Knox, left, with her mother Donella, the week before Ruby was killed.

"The sector is under-funded, under-resourced and there is no clear journey for people with autism. A lot of families give up trying to get support through the public health system because it's just too hard."

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Blenheim woman Donella Knox murdered her daughter Ruby last May after struggling to find respite carers who could cope with her large and sometimes violent daughter.

Donella Knox is sentenced at the High Court in Blenheim.
DEREK FLYNN/FAIRFAX NZ

Donella Knox is sentenced at the High Court in Blenheim.

Dougan said Knox's case made the need for improvements to respite care obvious, and they were needed "from the top".

"We have to try and avoid getting into that situation again, and to do that, the system needs to be stripped back and changed completely."

There should be more carers who were better trained, Dougan said.

Respite carers should also be paid more, which would keep them in the job longer, he said.

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"If they were paid more, they would stick around longer. Respite care does see a high turnover which does cause challenges, and it's hard to maintain a consistent approach to therapy when the carers keep changing.

"Other organisations are saying the same."

Workers' union E tu announced it would appeal a Supreme Court decision preventing respite carers from earning minimum wage, presenting its case in Wellington on Friday.

It would appeal the Court of Appeal ruling last August that reversed an Employment Court decision granting carers minimum wage.

Instead of minimum wage, respite workers were paid a 'subsidy' of $75 a day for up to 24 hours of work.

The union was appealing on behalf of former respite worker Jan Lowe, of Kapiti, who fought for the original Employment Court ruling.

The Court of Appeal said Lowe was not employed by the Ministry of Health, which paid respite carers, or the district health board which assessed patients for respite care.

"It makes no sense to have a government which sets a minimum wage but allows this to happen. I'd like something sensible and something fair, something more than just what we've got," Lowe said.

"I know it's a legal argument but this decision is about real people – not just us, but also the people we care for."

The ministry said while it did not track how many people had autism, it kept figures on how many people applied for respite care.

There were 92 people receiving respite care in Marlborough, and 36 of those were autistic.

Ministry disability support services group manager Toni Atkinson said there were many autistic people who did not need disability support.

There was no need to improve training for carers, and autism support was not under-resourced, she said.

"The ministry funds an organisation, Te Pou, to provide disability and workforce training. Other support is available based on people's disability-related needs which varies for each individual."

Atkinson did not know how many respite carers worked in Marlborough, she said.

She would not comment directly on the amount of support Donella Knox received, but said the ministry was always working to improve how it supported disabled people.

"The ministry has recently invested in a new carer matching/carer learning service. This gives people across the country access to an online database of carers."

 - The Marlborough Express

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