New disability ministry to launch Friday - is it ready?

As health and disability services go through a major overhaul, 1News takes an in-depth look at what's changing and why.

There's change on the way for disabled Kiwis as their own ministry launches on Friday, in sync with the biggest health service overhaul in 20 years.

The new ministry will take over disability funding that until now, sat with the Ministry of Health.

READ MORE: DHBs gone by end of week - what it means for you

It's set to address the Government's acknowledgement that the current system is broken, fragmented, and puts too many barriers in place for disabled people and their whānau.

READ MORE: High hopes ahead of NZ's biggest health shake-up in 20 years

The shift is set to be seamless for those currently relying on services, with those involved with the establishment process saying more significant and transformational change won't come until later.

Co-chair of the Ministry Establishment Governance Group Gerri Pomeroy told 1News: "It's all about getting all the support and services across to the new ministry, nothing will change in the initial stages and when the chief executive is appointed that's when the changes will start to happen... it'll be a journey.

"The new ministry presents a unique opportunity, because its role is to both listen to and empower the voices of all disabled people in disability policy across Government – and to deliver services.

"This means that as well as transforming the disability support system, the Ministry has mandate to effect change for disabled people in areas such as education, employment and wellbeing," Pomeroy said.

Disability advocate Huhana Hickey, who's also been on the ministry's Establishment Governance Group, isn't confident the new ministry is ready.

"There's still a long way to go to understand who we are, in order to get a ministry that's going to reflect that community and to do that, we can't rush it."

She believes it'll take about a year to get things sorted.

The new ministry's interim leader and official name, in English, te reo and NZ Sign Language will be announced on Friday.

It's not clear how long the temporary appointee will be in the role.

Advocates are hoping the chief executive is disabled, as they say it's essential the community leads the change.

READ MORE: Govt ministry established for Kiwis with disabilities

When plans for the new ministry were first announced in October 2021, Disability Rights Commissioner Paula Tesoriero told 1News: "This Ministry won’t succeed without disabled peoples’ leadership - and disabled people as employees and decision-makers during the transition and in its on-going development."

She's comforted things are on the right track, because disabled people and their families have been involved in steering groups for the new body.

"There's so much more work to be done to establish the new ministry, what will be really important is the voice of disabled people continue to guide what the ministry does."

"Like establishing any new organisation it's going to take some time."

Tesoriero says there's a lot of optimism about the ministry coming to fruition, and a genuine sentiment it will make a difference.

"There are high expectations and that's because for decades the outcomes disabled people have experienced have not been what they need to be."

The Establishment Unit said: "Setting the identity, vision and strategy of the new Ministry, and embarking on disability system transformation, will be led by the new chief executive and their team in partnership with the community."

It says, starting on Friday, there will be a period of consolidation, as the new ministry "embeds its functions and assesses options".

"After the consolidation phase, the ministry will be ready to begin to drive better outcomes for all disabled people."

Hickey said she has a clear vision of how things should work.

"That you have the policy people, the ones that are doing the law changes sit in Government, sit in Wellington, but that the ministry itself is a bunch of little hubs, a bit like MSD, that disabled can go into and get access to information in a format they understand."

That idea's supported by Wellsford mum Stacey Dodd, whose eight-year-old son Thomas lives with cerebral palsy.

He also has epilepsy, is legally blind and has a number of other conditions.

Moving through the system to get Thomas support at school and home hasn't been straightforward.

"It's very confusing, overwhelming and disjointed," Dodd said.

"It would just be nice if it was a wrap around one stop shop... a wrap around service so there's no disjointed communications between different agencies, everyone's on the same page."

She has high hopes for her son's future, that he'll have access to the tools and technology he needs to communicate.

"For now it's me, I'm his voice, I'm his advocate but I would love for him to be his own voice, because he does have his own voice."

Living in Wellsford, right on the border of the Auckland region, she doesn't want Thomas to miss out because of where they live.

That's important for his healthcare too, she said.

Right now, Dodd says crucial care can slip through the cracks.

Our new health system, coming into force on Friday is required to have a disability strategy.

Disability Rights Commissioner Paula Tesoriero said: "My understanding is they've started that work, again the devil will be in the detail.

"It's really really critical that Health NZ and the Māori Health Authority have disabled people front of mind in their service delivery."

She emphasised the entities are still responsible for the health outcomes of disabled Kiwis.

READ MORE: High hopes ahead of NZ's biggest health shake-up in 20 years

Hickey isn't confident, saying she doesn't feel disabled people have had a seat at the table, as the new reforms have been set up.

"We've created this whole new health system and we've still got phase two of the Māori health claims to be heard, which is ironically about disabled people.

"The sceptic in me is, why have we got no disabled sitting on either of those authorities? Why are there none? Because I know plenty applied.

"We are health consumers as much as we are disabled... but apparently we're not good enough to be sitting at the table with those decision makers."

She says rushing changes could lead to a health system that's going to meet the needs of disabled Kiwis even less.

The Health Ministry says the reform of the health system has provided an opportunity to review the arrangements for working with and supporting the one in four Kiwis that identify as disabled.

In a statement, a spokesperson said: "A joined-up approach with accountabilities for the health of disabled people across the reformed health system will be required to realise any meaningful improvement in the health outcomes experienced by disabled people, particularly for tāngata whaikaha, Pacific disabled people and other intersectional groups.

"This will also require increasing the focus on disability and accessibility as equity issues and disability capability across all health entities."

"It will be important that all health entities work closely with the Ministry for Disabled People."

Dodd said among the healthcare needs her son Thomas has, is regular scans of his hips before they may dislocate.

"Early intervention is key... but things can slip in the system and you'll ring them up to be the squeaky wheel to chase up."

She also said often there're medical staff that aren't familiar with treating children like Thomas.

She's hopeful the system will be better equipped to support him in years to come.