Off the Record: An investigation into the Ministry of Health’s collection, use, and reporting of information about the deaths of people with intellectual disabilities

Executive summary

The investigation

New Zealanders with intellectual disabilities have overall poorer health outcomes compared to people without intellectual disabilities, despite higher than average use of health services. There are significant differences in life expectancy—people with intellectual disabilities can expect their lives to be shorter by an estimated 17-24 years compared to the general population. There is concern that the deaths of some people with intellectual disabilities may be premature
or avoidable.

The Ministry of Health (the Ministry) is responsible for leading New Zealand’s health and disability systems. It also funds, purchases, and monitors disability support services. These support services are provided by district health boards (DHBs) and community-based organisations, and include full-time residential support for more than 6000 people with intellectual disabilities.

People with intellectual disabilities are amongst the most marginalised members of society. Good data, used effectively is fundamental to improving their lives and life expectancy, reducing inequities, and promoting a more inclusive society.

The purpose of my investigation was to examine the Ministry’s policies and practices in recording and reporting the deaths of people with intellectual disabilities receiving full-time residential support, in order to identify whether they were consistent with good administrative practice and accountability, and relevant international conventions including the United Nations Convention on the Rights of Persons with Disabilities.

My investigation examined the Ministry’s systems of information collection, analysis, and reporting in relation to the deaths of people living in facilities run by DHBs and non-DHB providers. It included consideration of the Ministry’s records relating to people with intellectual disabilities who died between 1 January 2016 and 30 June 2018, who had been receiving full-time, Ministry-funded residential support in the Auckland, Wellington, and Canterbury regions.

My investigation focused on Disability Support Services (DSS) as the service within the Ministry that was responsible for purchasing and monitoring services provided for people with intellectual disabilities, including residential support.

My opinion

Overall, it is my opinion that for the period under review, the Ministry’s systems for the collection, use, and reporting of information about the deaths of people with intellectual disabilities receiving residential support, and associated record keeping, were unreasonable.

Information collection

The Ministry’s systems did not support the collection of complete, accurate or sufficient information in the context of its fundamental responsibilities and obligations.

• The Ministry did not have systems and processes in place to ensure that DSS, as the service responsible for purchasing and monitoring residential support, was informed of all of the deaths of its service users. There was no arrangement to cross-check the death notifications received from providers with relevant information held by other Ministry services. Enquiries made in the course of this investigation revealed 10 people who met the criteria for my sample group but whose deaths DSS had been unaware of. This represented just over nine percent of my sample group. 
• There was no clear process to ensure the information held by DSS about a person’s cause of death was updated when additional information became available after receipt of the initial notification. 
• As the funder and purchaser of residential support, the Ministry has an obligation to collect information to ensure providers are delivering quality services in accordance with their contracts. The information collected by the Ministry was insufficient for those purposes. 
• Furthermore, there was a lack of consistency among staff as to what constituted insufficient information and when further enquiries were required.

Use and reporting of information

The Ministry did not use and report on the information it collected, or was mandated to collect, to meet its quality assurance obligations or for broader evaluative and decision-making purposes.

• Ministry staff responsible for reviewing death notifications were provided with no clear guidance for determining whether further information or follow-up action was necessary. This led to practice that was both inconsistent and at odds with senior management’s expectations. There was no internal audit process that might have identified this. Of particular note were a number of cases in the records for my sample group where DSS was advised that the person had died suddenly and unexpectedly, but no further information was obtained in relation to whether the death may have been avoidable, or to determine whether any follow-up action was required. 
• Some providers carried out their own reviews following the death of their residents, to consider whether they had been provided with appropriate care, treatment, and support, and whether anything could or should have been done differently. However, a number of providers carried out no such reviews. The evidence from my sample group indicated that even when a review was completed, the Ministry rarely obtained details of the findings and any recommendations, contrary to the expectations of DSS senior management. 
• Some staff appeared to believe that if a person’s death had been reported to a coroner, it was unnecessary for them to make further enquiries or take any follow-up action. It was also evident that, unless a coroner made a finding or recommendation specific to the Ministry (and this did not occur in any of the cases in my sample group), information about the outcome of a coronial inquiry was rarely obtained by DSS. 
• There was little evidence to indicate information was analysed or reported in ways that could be shared with the residential support providers to support their quality improvement efforts, or to inform future policy development and initiatives.

Record keeping

• The Ministry’s record keeping was deficient, a fact brought into sharp focus by the difficulties it had locating information required for my investigation. 
• Of particular note was the lack of records showing enquiries made or actions taken by DSS in relation to a death notification, an identified or potential concern, and the outcome of any enquiries or other actions. The records for my sample group simply did not reflect the level of engagement that relevant staff reported having with either their Ministry colleagues or providers. 
• Some interactions that should have been documented were not. Some information was not saved, or not saved in a manner that allowed it to be readily located and retrieved. 
• There was no shared or standardised process for recording and saving information. 
• There was no clear and consistent process for ensuring the spreadsheet used by DSS to collate information about the deaths of service users was updated if and when additional information came to hand at a later date. There were gaps in the process for keeping track of cases where a concern or potential concern had been identified, and enquiries were being made or follow-up action taken.