The government is reassuring disabled people their voices will be heard as it presses on with major reforms to New Zealand's district health boards (DHB).
Health Minister Andrew Little. Photo: RNZ / Dom Thomas
Disabled communities were furious after the 2020 Simpson report - which the reforms are based on - failed to adequately consult with them.
Health Minister Andrew Little will speak to senior doctors this morning to outline progress but some disabled people - one of the largest minority groups, who would be deeply affected - are frustrated at not having heard more.
About a quarter of the New Zealand population has a disability and often that means making heavy use of the health system.
When Little announced the government's plan to scrap DHBs and replace them with a single health entity, he said more work would be done to consult disabled people.
The reforms were guided by the Health and Disability System Review led by Heather Simpson - which despite its name had so little contact with disabled people it did not mention disability separately until page 150.
Disabled people have however been waiting for more information about what it will mean for them ever since.
Human Rights lawyer Dr Huhana Hickey (Waikato and Ngāti Tahinga), who has multiple sclerosis and uses a wheelchair, said it was extremely frustrating when job applications for roles in the new health authority had already begun.
"Nobody I know - and I know quite a few in the network - has heard a thing. If there's consultation it's definitely not been coming to us yet - unless that's what they're planning in September - because we've heard nothing."
Dr Huhana Hickey. Photo: Supplied
"We don't know what to do, where to go, we don't know what the services are going to look like, we don't know what the future is."
Little said today's statement about DHBs would not include anything specific about disabled people, but there had been consultation since the reforms were announced.
"The transition unit has had five engagements now with the disabled persons' coalition, in addition to that they've run a number of workshops on specific issues.
"There is one person who is dedicated to disability issues in the transition unit who in addition to engaging with those organisations has engaged with families, carers and a range of others, taking on board their input into a whole range of factors into what we're doing on the health reforms."
The Disabled People's Organisations Coalition (DPO) is made up of seven national disabled people's organisations. Speaking on their behalf, Blind Citizens New Zealand national president Jonathan Godfrey said they had to write to the Prime Minister twice over the Simpson review's failure to consult, but there had been fruitful consultation since then.
"The moves to a new system are considerably better informed today than they were six months ago with respect to disabled people ... that doesn't mean they're going to get everything right.
"Fundamental change for disabled people is required and if those officials listen to what they're hearing from disabled people then I have every confidence that they will be able to make change," he said.
However, Hickey said the DPO was not representative of all disabled people, and wider consultation was needed.
"There's very few disabled represented by the DPO that exists at the moment and so if that's who they're engaging with they're actually excluding a majority of disabled, and in fact the majority of Māori and Pasifika disabled as well."
Godfrey said while it was true the coalition did not represent every disabled person, further consultation would come in time.
"There will need to be ongoing consultation and engagement with disabled people in their communities, at a national level, at all levels that this health system is going to affect ... it's not simple."
"We know that the health outcomes for disabled people are substandard with respect to the rest of New Zealand. We are overrepresented in the communities who are unable to afford to get to the healthcare we need."
"I think it's important for everyone in the new health system that disabled people are entitled to enjoy the same health outcomes as anyone who is not disabled. That's going to take some serious thinking at all levels of the new system from locally-provided services to the national overseers.
Little said a separate piece of work was also under way into the provision of administration, support, leadership, governance for disabled support.
"Minister Sepuloni and I are expecting a report on that next month and that'll be the basis on which the government makes decisions."
Disability Issues Minister Carmel Sepuloni said she had met with the DPO in June and "was really encouraged to hear that they are feeling engaged and positive about the work the government is doing in relation to the health and disability systems review".
The Disabled Persons Assembly, a group of disabled people which is a member of the DPO, said there had been engagement through the DPO Coalition and the Enabling Good Lives Leadership Group.
"We wait in anticipation until September to see whether disabled people's voices have been truly considered in any announced reforms of disability support services, the Assembly said in a statement.
"We hope that the work that is going on in that space leads to a health system that responds to the needs of disabled people as a population group and ensures equitable health outcomes for all."