People with intellectual disabilities in New Zealand are dying too young and we don’t know why.
This is the key finding of new research, ‘Counting for Something’, which is the second report to come out this year critical of a lack of information about the deaths of these disabled New Zealanders.
The report says life expectancy for New Zealanders with intellectual disabilities is between 18 and 23 years less than the general population.
In her report, disability researcher Sharon Brandford describes a piecemeal and uncoordinated approach by the Ministry of Health and various mortality review bodies and suggests they work together to avoid premature deaths.
Results of an investigation by the Chief Ombudsman, released in July, identified significant 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 found that the Ministry of Health had not adequately dealt with deaths reported to it by disability service providers, despite knowing through its own research that people with intellectual disabilities were high users of health services but still had poor health.
Ms Brandford, who has over 35 years’ experience in the intellectual disability support sector, backed his call for New Zealand to develop an independent national death review system.
She says she felt energised by the Chief Ombudsman’s investigation. Her purpose in preparing her report was to increase visibility and response to early deaths, and not just for those in full-time care. Her work has been funded by the IHC Foundation.
“We’ve known about the poor health outcomes for years now. The agencies responsible for recording and investigating deaths must be supported to identify ways to improve life expectancy.
“Bereaved families and friends want these premature deaths to count for something.”
She says overseas research shows that people with intellectual disabilities too often die from conditions that can be treated and would not normally be fatal, or from conditions that are not recognised and poorly treated.
“New Zealanders with disabilities want and expect health services to treat them right when they are unwell. Like everyone else, they want to get on with living good and long lives.”
She believes more progress will be made if New Zealand health and disability sectors created a culture of openness rather than blame.
Ms Brandford organised a workshop with relevant agencies, including the Ministry of Health, to discuss her findings in mid-November and explore how to make people with intellectual disabilities more visible in health records and public health data; to better inform families, friends and carers of their options for investigation of a worrying death; and to support the Ministry of Health to lead a coordinated response to improve life expectancy with urgency.
The IHC Foundation says it is pleased to contribute to this important debate – “in the hope that we will finally see concerted action to address the unacceptable fact that people with intellectual disability are dying younger than other New Zealanders”.
IHC Director of Advocacy Trish Grant says the Government now has an opportunity to make this group of New Zealanders count for something after decades of “death by indifference”.
“IHC calls on the new Minister for Health, Andrew Little, to ensure health ‘justice’. This will require his officials in the Ministry of Health to lead the collaborative work required to stop people with intellectual disability dying too early. These are avoidable deaths in many cases,” she says.
Dr Garth Bennie, Chief Executive of the New Zealand Disability Support Network says this is an extremely timely piece of research highlighting the lack of progress in an area that should be receiving the utmost urgency. “A comprehensive and accessible report, ‘Counting for Something’, provides a clear pathway for substantial change that leaves no doubt about who should be doing what from this point forward.”
Caption: A black granite memorial wall, on a hill in rural Waikato, bears the names of 457 people, some of the deceased residents of the former Tokanui Psychiatric Hospital. The memorial was set up in 2016 to remember those patients with mental illness and intellectual disabilities who were buried between 1914 and 1964. Engraved are the lines, “For those we knew, and those unknown, they shall not be forgotten - in memory of the people buried in this field”.