Strong Voices

Researcher Sharon Brandford is keenly aware of the outrage felt in the disability community over the way New Zealand treats the lives and premature deaths of people with intellectual disabilities.

It was her own outrage that led her to look at how we investigate their deaths.

Her report released late last year, ‘Counting for Something’, says life expectancy for New Zealanders with intellectual disabilities is between 18 and 23 years less than for the general population.

Sharon says she resisted the temptation to plunge straight into what she sees as contributing factors to those premature deaths – too much medication, too few health checks, late diagnosis and treatment, poor awareness of health issues and failure to promote good health. Instead she wanted to look behind the deaths and suggest how a coordinated approach to recording them might make a difference.

“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,” she says.

“Bereaved families and friends want these premature deaths to count for something.” Underlying it all is a sense that the death of someone with an intellectual disability is not a tragedy but ‘a release’. “It is just not seen to be a loss when someone with a disability dies because there is an inherent lack of value,” she says.

‘Counting for Something’ was the second report to come out in 2020 criticising the lack of information about the deaths of these disabled New Zealanders. The report describes a piecemeal and uncoordinated approach by the Ministry of Health (MOH) and various mortality review bodies and suggests they work together to avoid these premature deaths. An earlier investigation by the Chief Ombudsman, released in July last year, identified significant gaps in the MOH’s collection and use of information about the deaths of people with intellectual disabilities in full-time residential care.

That investigation found that the MOH had not adequately dealt with deaths reported to it by disability service providers, despite its knowing through its own research that people with intellectual disabilities were high users of health services but still had poor health.

Sharon, who has more than 35 years’ experience in the intellectual disability support sector, backed the Ombudsman’s 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 the visibility of and responses to early deaths, and not just for those in full-time care. Her work has been funded by the IHC Foundation.

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 the New Zealand health and disability sectors create a culture of openness rather than blame.

Sharon is keen to have a conversation with the MOH about how to make people with intellectual disabilities more visible in health records and public health data; to better inform families, friends and carers about their options for investigating a worrying death; and how to support the MOH to urgently lead a coordinated response to improve life expectancy. She wants to see action involving not only its Disability Directorate, but also health experts and policy makers in personal and public health.

“I would really like there to be some clearing house where we could put all the information that we have already, so it is more easily shared.”

Sharon would also like disability providers to have a common approach to supporting access to health and to investigating death, and to commit to increasing the awareness and skills of the disability workforce.

“With better recording, reporting and investigation, families, people with disability and advocates can push for attention to those factors known to impact on health outcomes.”

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 of 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 memorial wall was finally built in 2016 to list the names of all those buried between 1914 and 1964 at the Tokanui Hospital Cemetery, in a field that lies south of the Waikato town of Te Awamutu. At one time 1000 patients lived and worked in the hospital. It closed in March 1998.