The government should abandon some recommendations in the major Health and Disability review that "failed" people with disabilities, and set up a separate ministry, people across the disability sector say.
An advocacy group of people with disabilities, the Disabled Persons' Assembly (DPA), has already been vocal about a lack of representation on the Heather Simpson-led report, but criticism of it from right across the sector goes much deeper than that.
Disabled people, families and support groups alike say it is time for the disability support system to move away from the health system to include things like housing, education, employment and transport. They want to abandon what they say is a two-tiered system which arbitrarily discriminates on funding depending on the cause of disability.
Dr Huhana Hickey, a human rights tribunal lawyer who identifies as a disabled person, told RNZ the review was "appalling" for disabled people.
"We've still got the issue of a two-tiered disability system, we've got ACC and DHBs ... we've got a multiple system that discriminates in multiple ways and none of that is covered in the report."
DPA president Gerri Pomeroy, who identifies as a disabled person, said the group was very disappointed in the review.
"We would say that you need to rethink this and talk to disabled people and whānau ... and look at it again."
Disability Issues Minister Carmel Sepuloni was asked for a second time to comment on criticisms of the report regarding disabled people, but simply offered the same statement, that the government was "aware there are still some barriers facing disabled people".
"Understanding those issues and providing support where we can is an ongoing process. The government is currently giving consideration to the recommendations of the Health and Disability System Review and to other issues that have been raised more broadly across the sector. Decisions on those will be made in due course."
Considering the review failed to have any disabled people on its steering group or review panel, disabled people, whānau and support workers feel their voice has not been heard.
Pomeroy had a message for the minister:
"Disabled people have the right to have their views taken into consideration and be heard, particularly now the government is a signatory to the UN Declaration on the Rights of Disabled Persons."
While she and others supported many of the health system changes the report suggested, she said the review was "as we feared, a health review with disability tacked on".
Standards and Monitoring Services (SAMS) is a group that provides needs evaluation services and networking for disabled people and is led by disabled people and their families. Chief executive Mark Benjamin said the report was a "dangerous diversion and would potentially erode a massive amount of work done by disabled people, families, providers and officials after the 2008 Select Committee Inquiry".
On top of a lack of representation, he pinned the report's failures to three main points:
* That disability is not a health issue
* That the report fails to acknowledge or make recommendations that consider the work done on changing service delivery since 2008
* That it assumes the government's mechanisms for allocating disability funding will remain the same
* SAMS, along with other groups in the Family Leadership Alliance (FLA), and DPA all called on the government to disregard the report's recommendations about disability.
"There's an old quote that goes something like this," Benjamin said, "When people who don't usually talk are heard by people who don't usually listen, great things can happen ... I think the report failed to hear the voices from the disability community."
Divorcing from the health system
Disabled person and DPA senior kaituitui Chris Ford said disability support and funding should be governed by a human rights focus, rather than a health focus.
"Disability is rather about the barriers that society erects on our participation," he said.
"Barriers like housing or building for example, that creates a barrier which creates disability ... so it's really about shifting it to ensuring that it enables people to live fully and inclusively with the right support that we actually need."
He said that after 30 years of disability being siloed within the health system, disabled people were sick of the lack of progress.
"[The review] really missed the boat in terms of the opportunity to overhaul the disability support system, in terms of addressing once and for all the gross inequities between the ACC and Ministry of Health ... by essentially bringing them together under an umbrella."
Dr Hickey said the review should never have been called a review of the "Health and Disability" sector.
"One of the criticisms that I had from the beginning: why are we having a 'Health and Disability' review? ... putting the two together has watered down the voice of disabled people," she said.
"Disability is not a health issue. You can be a disabled person and be an elite sportsperson, a singer."
She called for a new ministry for disabled people to be set up.
"Disability needs its own review group and I think it's time that we called for our own ministry, our own leadership ... but we need to do it partnership with Māori disabled because they are the biggest group but the least represented.
"We have no voice in government so we must have our own ministry or our own commission ... right now we're in 2020 and we still don't have a voice.
"Not with the health system leading the way, because they don't know what they're doing. They deal with our health when we get sick... but they don't know how to deal with our day to day lives."
NZ Disability Support Network represents support services from across New Zealand, and chief executive Garth Bennie said while they did not believe it was necessary to have a separate ministry, their aspiration was for disability to be separated from the health system.
"While many in the sector are calling for a separate entity of some kind that can focus on disability support, we think this sort of change should occur in the context of much bolder reforms," he told RNZ. "But the appetite from government for that doesn't seem to be there.
"From our perspective, the Health and Disability Review report is actually a health system review that pays lip service to the disability sector and continues to marginalise disabled people."
He said NZDSN would work with the government on some changes from the review if it was "determined to pursue the perceived dangers of the recommendations of the Simpson report".
He said the two-tiered system that splits disability support into Health, the Ministry of Social Development and ACC was discriminatory.
"The two systems are incredibly different in terms of access, levels of support and responsiveness."
The group wanted that addressed with bigger, bolder reforms but said it was realistic about the government's appetite for that at the moment.
"What we're talking about is dusting off the Woodhouse report from 1967 which had the design of a truly integrated approach to supporting disability, whatever the cause."
The Simpson report recommendation that DHBs become more involved in delivering disability support was also very unpopular.
SAMS' Mark Benjamin said he had not heard anyone suggest it was a good idea in dozens of forums over the past decade.
Disability rights advocacy group Imagine Better chief executive Tony Paine said it would just perpetuate the kind of medical approach to disability that was completely at odds with how the government and disabled people and families have been trying to approach change.
"Yet again we're just seeing disabled people, their families and their needs being forgotten and overlooked... self-determination is being replaced by a paternalistic attitude."
Pomeroy said the same thing.
"For a long time, disabled people have been saying that Disability Support should never have been lumped together with "health" and this review simply leaves us feeling this more than ever."
DPA also supported calls for some kind of separate authority to deliver disability services, whatever form that might take.
"Staffed, led, and governed by disabled people, that has a close working relationship with the Minister for Disability Issues," Pomeroy said. "Ideally this organisation would hold ultimate responsibility to commission the supports and services disabled people and family require to live a good life."
Lack of representation
The report quoted census statistics showing disabled people make up 24 per cent of New Zealand's population. Māori are also far more likely to have a disability than any other ethnicity.
Despite this, and despite disability being in the very title of the review, there was no representation of disabled people or Māori disabled people on the steering committee or review panel for the report, nor even an advisory group for disability.
Dr Hickey said it showed.
"Our voice was not there," she said. "Everything was done from an able-bodied, providers' perspective ... we didn't get to anything about disability until page 150."
Pomeroy said views were sought, but disabled people were not part of bringing those views to the Health and Disability review.
"In our opinion that's a significant gap.
The report also failed to advocate for more representation of disabled people.
"The design proposed by this report creates no space for disabled leadership - for example, there is no suggestion of a requirement for disabled representation on either the Health NZ Board or DHB Boards," Pomeroy said.
"There is no acknowledgement of the need for disabled people in any form of governance within the system - including within disability support services."
Enabling Good Lives
Many of those spoken to supported an approach taken by the Enabling Good Lives project. It takes a series of principles as its starting point and offers disabled people and their families financial control over a budget, dictating how their disability support funding can be spent.
Paine said the report failed to acknowledge the work put into that programme.
"Our fundamental point is that there's been a huge amount of work done by the community and indeed by the government to make sure that we're treated on the basis of 'nothing about us without us'."
He said the EGL approach, which the Ministry of Health had been trialling in Waikato, MidCentral and Canterbury, gave as much control as possible to disabled people and families about saying what they needed.
"That has been working in pockets around the country ... this report seems like another missed opportunity."
The report's terms of reference said it aimed to reduce barriers to access to health and disability services to achieve equitable outcomes for all parts of the population, but also specifically omitted ACC and the EGL approach.
Paine said that was a huge mistake.
"You can't really talk about the 'health and disability' system without bumping into that ... there is ample evidence and clear understanding of what we're trying to achieve in autonomy that needs to just be rolled out to the country."
He said the review had been advertised to the disability community as "the thing we were all waiting for" but ended up being a bit of a damp squib.
"It was certainly framed as being a really significant review - and it is a significant review in terms of how the health system runs and operates - but the way it's come out it just seems like it's just another delay."
Dr Hickey was a dissenting voice. She said the EGL trials were not financially sustainable and called for the 1989 Woodhouse report to be dusted off.
"EGL is a good model but it's flawed financially ... it's a trial. Every time they run out of money, they take it from the rest of us.
"The rest of us are losing our money every single year that they bring that trial up, so they either bring that model up all over the board or abandon it. Five years is enough to know if it works."
Parent to Parent chief executive Jane Bawden disagreed, saying the pilots were routinely producing better results for the same funding.
"For the same government investment, demonstrably better outcomes are being achieved than under the historic system which the Simpson report appears to be proposing to continue.
"This is an area of government investment that is really working well for the government and disabled people. Why are we not singing this from the rooftops? Don't we all, at the end of the day, want choice and control over how we live our lives?"
Benjamin said the EGL approach should have been at least included in the review from the beginning.
He was not married to the Enabling Good Lives trials but said access to personal budgets and strong community and peer networks was an essential change that needed to be made.
"It's got to be a system that works easily for people. The current system ... it traumatises people often. It involves telling the story of your worst day over and over. It involves having to tell different government agencies your information over and over."
He called for a "joined-up" approach that focused on ease of access.
"Obviously some of the key partners would be health, Ministry of Social Development, Ministry of Education, Oranga Tamariki - they would be key government organisations that would be able to share information - and I mean, basically disabled people and families get very tired having to fit into a complex government system."