The parents of a 20-year-old disabled man who died under compulsory care are devastated that no one is being held accountable for what they believe was "gross negligence".
By Ruth Hill of RNZ
A receipt for a curry found in Jacob Davies' room at the NZCL residential facility after his death may hold the clue to what killed him.
Jacob had the genetic disorder Prader-Willi Syndrome, which causes intellectual disability and uncontrollable, compulsive appetite.
His mother, Jo Davies, said it was not just about weight gain, although some people with the condition have binged themselves to death.
"If Jacob wasn't supervised, he would just eat everything.
"He wouldn't leave anything on a plate. He would pick food up off the floor and eat it, he'd take food out of the bin and eat it.
"They're not safe around food. There's also a choking risk because people with Prader-Willi eat really, really fast."
Davies estimated around six to eight percent of deaths are from choking.
But back to that fateful curry: Jacob spent his $40 allowance on the meal, including garlic naan, onion bajis and a mango lassi.
It is thought he swallowed something sharp — possibly a bone — which perforated his bowel, but no one was watching.
Staff notes from that day record "Jacob drank all the milk".
His mother wonders if he was trying wash the object down.
"But we'll never know, because no one asked him what happened."
The next day, Jacob ate nothing at all.
"That is a major, major red flag in someone with Prader-Willi. If someone's not eating, there's something seriously wrong."
His family saw him the following day, and his mother noticed he was a bit out of breath, but put it down to his recent weight gain.
However, over the next few days, he was reluctant to do his usual activities or go on outings, which was out-of-character.
He was off his food, and became increasingly unwell, but no one told his parents, who were his welfare guardians.
Jo Davies talked to him on Friday night and he told her he had a sore throat and had "trouble swimming", but the phone line was so bad she could not understand him.
She rang his caregiver on his mobile, who told her Jacob seemed "a bit down", and she urged him to keep an eye on him.
It turned out that staff did phone the company's health adviser later that night, who told them to give Jacob a laxative for his sore stomach.
The next day, he was too unwell to go out, so one staff member stayed with him.
His mother tried to call a couple of times that day, but no one answered.
The HDC investigation later found that Jacob spent most of the day alone in his room, with "no proactive checking".
"I don't know what he [the staff member] was doing, but he wasn't checking on Jacob," she said.
"And what's very strange is the support notes for that Saturday are blank."
The HDC investigation found staff accounts of what happened that day were inconsistent.
What is known for sure is that when staff came to give Jacob his medication at 8pm, they found he was very ill.
"He couldn't move, his eyes were all over the place, he couldn't see, he was slurring his words, he couldn't speak, he had urinated in his bed, he was in an awful state."
NZCL tried to make out that Jacob's deterioration was "sudden", Jo Davies said.
"But this would have been building for a long time, it's just no one recognised these signs."
Jacob was rushed to hospital that Saturday night, admitted to intensive care and had emergency surgery on Monday — but it was too late.
"They hadn't even closed him up after surgery because his stomach was so distended," Jo Davies said.
"We just stayed with him, talking a bit before they switched the machines off. There was nothing they could do."
The post-mortem showed the cause of death was ketoacidosis — a complication of undiagnosed diabetes, which caused a build-up of acids in the blood, leading to organ failure.
It was triggered by sepsis from the hole in his intestine.
The results of his lab tests only arrived after his death.
The HDC found Jacob's illness, and ultimately his death, were avoidable, but the serious failures in his care were "systemic" — not the fault of any individuals.
Lack of risk management 'appalling' - mother
However, Jo Davies said her son was never properly supervised at the NZCL facility in Levin, where he gained 20kg in just six months.
"There was very clear negligence on the part of the staff and NZCL.
"They had six months to train their staff and they didn't do it, kept putting it off.
"They had six months to get risk management in place, to read anything at all about Prader- Willi - but they just didn't, no one was listening."
Jo Davies said the lack of risk management was "all the more appalling" considering all the information she had given them, and the number of times the family had raised concerns about his care.
"The fact he was placed there at all makes me so angry. No one was listening to us."
No parent would move their child with Prader-Willi into a residential care home where the staff had no knowledge of PWS or training, she said.
"I'm not sure why it was deemed OK for Forensic Care Services (Intellectual Disability) to force Jacob into an unprepared, inexperienced home under the IDCCR [Intellectual Disability Compulsory Care and Rehabilitation] Act which put him at great risk and was literally a death sentence?"
After his death, she applied under the Official Information Act for the "needs assessment" when Jacob was placed in compulsory care.
"I couldn't believe that they were basing all their care on. There was nothing about his health needs. There was a bit where we were supposed to sign it, and he'd written 'Parents couldn't be contacted'."
NZCL's Care and Rehabilitation Plan was also inadequate, she said.
"It had nothing about the need for 24-hour supervision around food, nothing about the dangers of food, nothing about temperature instability that's characteristic of Prader-Willi, the high pain threshold, nothing about the gastrointestinal issues that Jacob had. It's awful."
The mother says they never wanted Jacob to go to Levin, far from his usual support network and activities.
She said in his first couple of weeks, he basically just stayed in his room, lay on his bed and did nothing.
"There was nothing in his room, no furniture, his bed was black with grime, it was just disgusting," she said.
"I went in and cleaned it. The whole place was really poorly run."
It was also "a scary environment", and his parents suspect Jacob was being bullied.
"All the other residents were all much older than Jacob. There were people who had been in that setting for years due to repeat offending."
The Health and Disability Commission has accepted there was no alternative placement available, which the family disputes.
It also found no problem with the needs assessment or care plan because both referred to Prader-Willi.
Jo Davies' digging also revealed that the Commission offered NZCL an "expedited" investigation pathway, if it accepted the finding that it had breached the Code of Patient Rights in one respect.
As part of the deal, NZCL would not be referred to the Director of Proceedings for possible prosecution, the investigation would stop, and NZCL would not be named in the final report, she said.
"So, while we were sitting there waiting to hear if there was going to be a referral [to the Director of Proceedings], they had already decided there wasn't going to be one."
Agencies respond
In response to RNZ's questions, the HDC said it had made multiple recommendations to NZCL to improve the quality of care provided and would be closely monitoring implementation.
"HDC is confident that we undertook a thorough inquiry in this case, including the gathering of all relevant evidence and seeking independent expert clinical advice.
"In this instance, we determined there was a clear breach of the Code based on the evidence gathered and the provider accepted this. As such, no further investigation was required."
A range of factors were taken into consideration by the Commissioner in deciding whether to refer a provider to the Director of Proceedings, including the nature and number of breaches found, the public interest, and "the commitment of the provider to learn from the incident and make improvements".
All the agencies involved extended their condolences to the Davies family for the tragic loss of Jacob.
ANZCL said it accepted the HDC's findings that "aspects of NZCL's services did not meet applicable standards", and "there were opportunities for improvement to protect Mr Jacob Davies and promote his well-being".
"We have made numerous changes since Mr Davies' death, including in response to the recommendations made by the HDC, with a view to ensuring that current and future residents receive an appropriate standard of care."
Its supported accommodation was "intended to facilitate a home-like environment" for people with intellectual disabilities.
"The homes are not clinical facilities and staff who attend the homes (and are rostered to ensure support is available 24/7) are not registered health professionals."
However, WorkSafe said because the matter "primarily relates to clinical care", the HDC was the appropriate authority to lead the investigation and it would not be investigating.
"We acknowledge the HDC's recommendations to strengthen care standards, and note that the coroner may also make further recommendations in due course."
The police told the family that Jacob's death does not meet the threshold for criminal negligence.
The Ministry for Social Development, which contracts NZCL to provide residential services, indicated it may ramp up auditing in the future.
Deputy Chief Executive for Disability Support Services, Anne Shaw, said the organisation was "very concerned that the Commissioner has identified that the provider's care fell critically short of the appropriate standard".
"The provider has confirmed that a final report is being completed on the actions they have taken and will be provided to HDC by the end of March 2026. A copy will also be provided to DSS."
The agency would continue to work closely with the provider to ensure improvements were "sustained", she said.
"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."
Health NZ — which oversees the Forensic Coordination Service that carried out Jacob Davies' needs assessment and care and rehabilitation plan — noted the HDC found that Prader Willi Syndrome was "well and frequently explained".
"Given this, the Commissioner did not consider any further action, or investigation was required and this aspect of the complaint was not upheld."
Family fights on
None of this satisfies Jo Davies.
"Jacob didn't have a medical problem until it was caused by them. It was not just a clinical error, it was six months of negligence and not having the right measures in place."
NZCL — "a multi-million dollar corporate" — had never accepted responsibility for Jacob's death, she said.
"Their apology means less than nothing.
"NZCL up until that point, they had been trying to absolve themselves of any blame — I've seen all of their original responses, they made excuses after excuses, there were so many inaccuracies, they were just interested in self-preservation."
Jo Davies — who heads the Prader-Willi Syndrome Association — has launched a parliamentary petition for organisations providing disability support services or mental health inpatient care to provide specific training for staff before working with people with health and safety risks relating to their conditions.
Jacob was more than how he died
Despite Jacob's challenging behaviours — which were typical of people with Prader-Willi Syndrome and autism — he was very loving and caring with a great sense of humour, his mother said.
"He really enjoyed doing things that helped people, such as donating blood, collecting for Mary Potter, and when I asked him to do a job for me, he'd say 'sure' and do it straight away."
He loved being a big brother.
"Despite his own sadness at the struggles he experienced, he was so proud of them and a number one fan!"
He had a tough time after leaving school and was struggling to find purpose.
But the sudden escalation in aggression, which culminated in his parents calling the police and him ending up in compulsory care, came "out of the blue".
"We will never get to see Jacob move past the devastating events that happened in adolescence and to finish growing up, to enjoy the simple adult life he dreamed of, planning and shopping for groceries, cooking for himself, getting a job.
"He had finally been given meds that he needed and was doing everything right to move on, so it adds to our distress that his life ended in such an unhappy place.
"I'll never forget his reply when we dropped him back after our last visit and said 'there you go, we got you home just in time for dinner' — he quickly replied 'this isn't my home'.
"I think of all the things and family milestones Jacob is going to miss.
"There will forever be a huge missing piece to our family."
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