Lives and deaths remain under the radar

People with intellectual disabilities struggle to get a mention in official statistics while they are alive – and their deaths too have warranted little notice or curiosity.

In his report ‘Off the Record’, released in July, Chief Ombudsman Peter Boshier has identified major gaps in the Ministry of Health’s collection and use of information about the deaths of people with intellectual disabilities in full-time residential care.

He examined data collected by the Ministry about the deaths of 108 people over a two-and-a-half-year period. “I began this investigation after being approached by people from the health and disability sector with concerns about a lack of information, follow-up and reporting, especially when there was a sudden or unexpected death,” Peter Boshier says.

IHC was one of the disability service providers urging better data collection. “We have been in dialogue with the Ombudsman’s office for several years,” says IHC Director of Advocacy Trish Grant.

The Chief Ombudsman’s investigation found that the Ministry’s systems were not adequate or robust; information collected was not complete, accurate or sufficient; and there was no evidence of it being used to make improvements in practice.

Peter Boshier says the Ministry’s record-keeping deficiencies were brought into sharp focus by the problems his investigation teams had obtaining relevant information.

“My investigation led to the Ministry service responsible for overseeing residential services identifying 30 deaths during the period under investigation that it was previously unaware of,” he says. “This was despite the information being held in other parts of the Ministry.

“People with intellectual disabilities are among the most marginalised members of society. Their overall health is poorer compared to people without intellectual disabilities, and they have a significantly lower life expectancy.

“The Ministry of Health funds residential support services. It is also responsible for monitoring the system, quality control and leading improvements that support people to live longer and healthier lives. I fail to see how it can meet these responsibilities or measure its own performance without good data and accurate record-keeping.”

He says the Ministry has already made substantial improvements, including introducing a Standard Operating Procedure for the reporting of deaths.

“I have made 10 recommendations, which aim to ensure the new approach is fully effective and sustainable, and which look to additional opportunities for improvement. These include a recommendation that the Ministry establishes an audit process to ensure relevant information is being shared, and records are up to standard. I have also recommended that the Ministry takes steps to ensure an appropriate level of review following a death.”

Trish says mortality data is only one aspect. The recently released Health and Disability System Review also highlighted the lack of information collected about disabled people at every level. She says there has to be better data collected on the health status of intellectually disabled people.

“What this report does is provide a lens on the worst end – what happens when people die,” she says. “In terms of the deaths, this an example of woeful disregard and exposes the lack of systemic monitoring and oversight.”

There was no curiosity about sudden and unexplainable deaths. If someone who hadn’t been sick died suddenly, no-one asked, “Why did they die?”.

“How many deaths should have gone to the coroner and didn’t, or to the police?” Trish asks. “There is almost an acceptance that weird things are going to happen to these people.

“The fact that the report can’t say how many of the deaths were preventable is a real indictment on the Ministry of Health.

“One of the most remarkable sections of ‘Off the Record’ details that Disability Service senior managers told the Ombudsman’s office that they had no mandate to obtain the outcome of a coronial inquiry into the death of a service user,” Trish says.

Tensions exist when the Ministry of Health is both a contract manager seeking to maintain trust-based relationships with providers and a regulator ensuring compliance.

“The Health and Disability System Review seeks to separate the stewardship role from the service delivery role. This is crucial. If these roles are combined it can be a conflict of interest.”


This story was published in Community Moves. The magazine is posted free to all IHC members.

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