Four major reports released this year show in stark detail the widespread disadvantage and discrimination that intellectually disabled people experience every day.
Collectively, they should send a message to all political parties ahead of the election that our current system is failing our intellectually disabled community – the new government, whoever it is, must take a wrecking ball to this decrepit structure.
Two insightful, detailed reports by the Ombudsman should help them swing it. Both reports are astonishing. They spell out government systems’ failure to recognise and respond to the humanity of intellectually disabled people.
The first, 'Off the Record’' shows the total lack of interest that parts of the Ministry of Health have in the disabled individuals they have a responsibility to serve.
Yet the Ombudsman’s investigations revealed 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’s bizarre that the ministry does not even have a normal curiosity over what caused the sudden and unexpected death of a disabled person.
Yet this is the mind-boggling reality of our current system.
Ministry of Health Disability Support Service senior managers also told the Ombudsman’s office they had no mandate to obtain the outcome of a coronial inquiry into the death of a service user.
Astonishingly, ministry 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 death of the intellectually disabled.
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 intellectual disabilities should be investigated in the same way as any other. That they have the disability should never be accepted as the reason for premature death.
The second report, 'A Matter of Urgency', based on the Ombudsman’s investigation into Oranga Tamariki’s policies, practices and procedures for the removal of newborn pēpi, displays astounding disregard for parents with disability.
It’s clear Oranga Tamariki has very little concern or focus on intellectually disabled parents, even though more than a fifth 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 two per cent of the general population!
Guidance from Oranga Tamariki, when discussing disabled parents, states that it is responsible for assessing parental capacity, but will need expertise from experienced professionals in this specialised area.
However, in the cases reviewed by the Ombudsman where a parent had intellectual disability, less than 17 per cent had up-to-date specialist assessments.
Under international law, no pēpi should be separated from their parents based on a disability of one or both of the parents.
This is basic human rights stuff that Oranga Tamariki should be well versed in – but apparently is 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.
The Health and Disability System review proposes an increased focus on population health.
A focus on the health outcomes of intellectually disabled people might prevent intellectually disabled people from dying 20 years earlier than the rest of the population – a basic human right.
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.
It makes clear that the Government must take urgent action on education, housing, and the use of seclusion and restraint against disabled people.
If it were to do so, the lives of disabled New Zealanders would improve dramatically.
We believe every issue is a disability issue. It is very clear we need to knock down our health and disability system, and all government systems that connect with people with intellectual disability, and rebuild.
Swing the wrecking ball.
IHC Advocacy Team