Source: Radio New Zealand
RNZ / Mark Papalii
Jacob Davies’ dream was to be in Guinness World Records one day as the longest-living person with Prader-Willi Syndrome.
Sadly, he died in May 2023 aged just 20, following months of poor supervision at a NZCL facility in Levin.
An investigation by the Health and Disability Commission found one-held-accountable-for-disabled-son-s-death his death – due to organ failure and sepsis from a perforated bowel – was “avoidable”.
His mother Jo Davies has launched a petition to require organisations to “provide disorder-specific training for staff before working with individuals who have health needs and safety risks associated with a particular disorder/health condition”.
Her son was in excellent physical health before he was sent to NZCL. She said there was no proper assessment or plan for Jacob, and managers and staff ignored the family’s efforts to educate them about Prader-Willi or give them information about Jacob’s particular health needs.
“Nobody who ever worked with Jacob ever read any of that or was made aware of any of that information. So they were supporting him blind basically, with no training.”
NZCL apologised that some aspects of its services “did not meet applicable standards”, and it had made numerous changes since Jacob Davies’ death.
Disability sector backs calls for ‘mandatory’ training
Rare Disorders New Zealand chief executive Chris Higgins conceded it could be “difficult” to find appropriate care for people with unusual requirements due to their specific condition or disability.
“But without adequate preparation and training, that facility is not appropriate for their needs as a whole person.”
Younger people with disabilities or degenerative conditions sometimes ended up in aged care facilities due to lack of alternatives, for instance.
“What is key is making sure that when people are placed – wherever that is – that the care staff have got appropriate and specific training so that appropriate support can be provided.”
Higgins said according to a survey of families, most of them had found health professionals and carers were not well-informed about their specific condition, and communication between services was often poor.
“Often it’s left to families to join the dots.”
Higgins said he hoped the Rare Disorders Strategy – developed 18 months ago – would lead to better care pathways and standards of care in both the health and disability systems.
“We just secured agreement in December from the health minister, the Ministry of Health and Health NZ to get on board with actively implementing it.
“It’s an issue that needs to be urgently addressed, because for many of those families caring for people, the time is coming when it’s no longer going to be sustainable.
“Parents are getting old themselves, they can’t continue to provide care, and they want to make sure their loved family members will be in a place where they can get the care they need.
“It’s imperative for care facilities to get better at supporting people.”
Disability advocate Jane Carrigan RNZ / Ana Tovey
Poor oversight creating deadly risk – advocate
Independent disability rights advocate Jane Carrigan said Davies’ death was not the first to result from poor supervision, and she feared “he won’t be the last”.
Like his family, she expressed disappointment that the Health and Disability Commission had decided the case did not meet the threshold for prosecution.
“I mean, what do you have to do to have a case referred to the director of proceedings [to consider prosecution] if they don’t put through a case like this?”
She supported specific-training for staff, but pointed out that the responsibility lay with providers and the government.
“It’s all very well staff having training. But if you continue to have an employment model where you only employ casuals or your staff turnover is through the roof, you can train people until the cows come home and it’s not going to make any difference because they won’t stay.”
RNZ / Mark Papalii
Carrigan – who had taken legal action against government agencies multiple times on behalf of family carers and people with disabilities – said New Zealand had yet to learn all the lessons of the Royal Commission of Inquiry into Abuse in Care.
“Actually, people were probably safer in institutional care because of what can go so wrong out there. People are effectively isolated in the community, both in the family home and in sub-optimal residential care.”
The government should not be allowed to “outsource its responsibilities”, she said.
“The Crown is like, ‘Thank god we’ve palmed that off and they’re now responsible.’ But it’s the Crown that’s responsible. They’re outsourcing their responsibility so they have to be completely accountable re: the service providers they work with.”
The Ministry for Social Development, which contracts providers to deliver residential services through Disability Support Services (DSS), has signalled plans to increase auditing in future.
In response to questions over Jacob’s case, it said it would be working with NZCL to ensure it carried out all the recommendations.
“DSS is strengthening its quality and assurance functions, and this includes its quality management systems, the handling of critical incidents and complaints, and the implementation of an enhanced audit programme.”
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– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand