Strong Voices

IHC Director of Advocacy Trish Grant says four reports touching on the lives of people with intellectual disability this year highlight the failure of our disability system.

Four major reports released this year show the widespread disadvantage and discrimination that intellectually disabled people in New Zealand experience daily.

Collectively, they should send a message that our current system is undervaluing and failing our intellectually disabled community – the Government must take a wrecking ball to this decrepit structure.

Two insightful and detailed reports by the Ombudsman should help them swing it.

The first, ‘Off the Record’, highlights the incredible lack of concern the Ministry of Health shows towards the deaths of intellectually disabled New Zealanders.

‘A Matter of Urgency’, the piercing review of the removal of newborns by Oranga Tamariki, highlights the damage to disabled parents and their families caused by policies and practices with scant regard for disability.

Both reports are astonishing. They highlight the failure of government systems to recognise and respond to the humanity of intellectually disabled people.

In particular, ‘Off the Record’ details the total lack of interest that parts of the Ministry of Health have in the disabled individuals they have a responsibility to serve.

The sobering reality is that intellectually disabled people here die 20 years earlier their death than other New Zealanders. Yet the Ombudsman’s investigations reveal the Ministry is not interested in undertaking even the most basic record-keeping about intellectually disabled people dying.

To us, it’s blindingly obvious that the Ministry should investigate all deaths to detect systemic and procedural failings and prevent other deaths. It is bizarre that the Ministry does not even have a normal curiosity about what caused the death of a disabled person when that death was sudden and unexpected. Yet this is the mind-boggling reality of our current system.

There are two remarkable sections in the Ombudsman’s ‘Off the Record’ report. First: Ministry of Health Disability Support Service senior managers told the Ombudsman’s office they had no mandate to obtain the outcome of a coronial inquiry into the death of a service user.

Second: Ministry of Health staff suggested that someone who dies in residential care has died ‘in their home’ and investigating their death would be intrusive and inconsistent with the push for disabled people to have greater choice and control in their lives.

Both statements speak to a deep, cold apathy towards the deaths of people with intellectual disabilities.

The second statement shows the Ministry even tries to morph that apathy into some sort of disability rights position – a particularly abhorrent and shameful approach. The death of a person with an intellectual disability should be investigated in the same way as any other person. The fact they have a disability should never be accepted as the reason for premature death. If the death is unnatural it must be investigated – there is no place to be blasé.

The investigation into Oranga Tamariki’s policies, practices and procedures for the removal of newborn pēpi, displays astounding disregard for parents with disabilities in our child protection systems.

It shows that Oranga Tamariki has very little concern or focus on intellectually disabled parents, even though a quarter of the files reviewed by the Ombudsman where a newborn was uplifted, noted a parent’s intellectual disability or learning disorder. By comparison, intellectually disabled people make up 2 percent of the general population.

Guidance from Oranga Tamariki, when discussing disabled parents, states that the agency is responsible for assessing parental capacity, but that this is a specialised area and they need expertise from experienced professionals. However, in the cases reviewed by the Ombudsman where a parent had intellectual disability, less than 17 percent had up-to-date specialist assessments.

The rights of disabled parents were not reflected anywhere in the Oranga Tamariki Practice Standards. In addition, the standards didn’t emphasise that IQ should not be used as a sole measure of parenting capacity, and didn’t specify the obligation under international law that no pēpi was to be separated from their parents based on a disability of one or both of the parents. This is basic human rights stuff that agencies like Oranga Tamariki should be well versed in – but apparently are not.

We are far from the only voice calling for change at Oranga Tamariki – but we will keep shouting it until governments listen.

There are glimmers of light in the tunnel. Some fabulous things have been proposed in the Health and Disability System review – such as an increased focus on population health. There is a lack of information collected about disabled people at every level, and this is critical in the health sphere.

If there is a focus on the health outcomes of intellectually disabled people, then there is a chance that we might prevent intellectually disabled people dying 20 years earlier than the rest of the population – a basic human right.

The review is well intentioned, but most of the recommendations lack detail to suggest this is the game-changer for disabled people and their families that they so badly need.

Lastly, one report that should be required reading for all political parties is ‘Making Disability Rights Real’, the third report of the Independent Monitoring Mechanism of the Convention on the Rights of Persons with Disabilities.

This report explores how disabled people in New Zealand are faring, what needs to be urgently fixed, and what needs to be improved. The report makes clear that education, housing, and the use of seclusion and restraint against disabled people are the most pressing issues that the Government must take urgent action on.

If the Government were to accept and implement the recommendations in the report, the improvement in the lives of disabled New Zealanders would be dramatic.

We believe every issue is a disability issue. The report lays out, very clearly, what needs to change for our health and disability system and all government systems that connect with people with intellectual disabilities.

Swing the wrecking ball.

This article, by IHC Director of Advocacy Trish Grant, was first published on Stuff in August 2020.

Above: Disabled people and their supporters wait to hear some good news from party candidates at an IHC election forum on disability issues in Wellington. (Back left) Erika Butters from The Personal Advocacy and Safeguarding Adults Trust. (Front, from left) Prudence Walker, Disabled Persons Assembly; Peter Knighton, President, People First Wairarapa; Sue Hobbs, People First Central Region Coordinator; Emmet Dale, Vice President, People First Kāpiti; Elizabeth Bennett, People First Kāpiti; Jason Donovan, President, People First Kāpiti and Central Region President.