Disability communities have largely welcomed the establishment of a new Ministry for Disabled People, agreeing it has the potential to improve disabled lives.
Minister for Disability Issues Carmel Sepuloni and Health Minister Andrew Little today announced plans for a new Ministry for Disabled People, the national rollout of Enabling Good Lives (EGL) service delivery, and a new law to improve accessibility in New Zealand.
The ministry, the name of which has not been confirmed, is expected to be up and running on 1 July 2022 with initial establishment costs of $5m of non-Budget funding sought.
It will have its own chief executive and be responsible for driving better outcomes for all disabled people through strategic policy and the delivery and upgrades of disability services.
Ongoing cost expectations for running the ministry and EGL service delivery have not been made public.
Disability Rights Commissioner Paula Tesoriero said she welcomed the fact the new agency would cover both service delivery and policy, and its independence and ability to work across sectors and departments was fantastic.
"It's really important that there is an entity that can look right across government and can help government agencies really shape their policies to the advantage of disabled people and also that this new entity can create its own policy and really start to test big ideas like creating greater equity between the ACC system and the health system and the welfare system."
She said if the accessibility legislation was done well, it could add an estimate $1.45 billion to GDP, simply by reducing barriers to people's ability to contribute and live their lives.
"Which is an enormous economic benefit, as well as all the social benefits that inclusion brings."
She hoped the ministry would be able to expand its scope beyond current types of service delivery and EGL, to find practical ways to regulate and reduce the barriers disabled people faced.
Colleen Brown has long fought for disabled rights, even taking on Work and Income over having to repeatedly prove her son Travers has Down syndrome to receive a disability allowance.
"I'm absolutely ecstatic that it's come out of health, it never should have been in health," she said.
She said having a standalone ministry would help change or remove some of the entrenched attitudinal barriers disabled people, families and whānau had to deal with constantly.
However, she was concerned about how effective the new ministry would be, and was concerned about the ministers' relatively few mentions about parents and families, who were often integral in the lives of severely disabled people.
"It is hard to see where they fit, for them, carrying the load with people with high and complex needs, with those on the autism spectrum who aren't going to be able to live lives without ongoing family support."
"How much clout that particular ministry is going to have we'll have to wait and see."
More data was also needed on where disability need was, particularly for Māori.
"Five years ago we were assured that government agencies would be able to share their data - I cannot see that. We cannot get data here in South Auckland for vaccinations ... those are the most vulnerable of people and nobody's got the data."
"So there's another opportunity for the ministry of disabilities."
She was also optimistic about the Enabling Good Lives programme, but "we would like to see the money".
Independent disability advocate Jane Carrigan however said the changes were akin to lipstick on a pig. She agreed the new ministry's influence would depend on whoever was assigned to run it, and was not so positive.
"To date it is an area that has been blighted by patronage and conflict, and unless those two areas are addressed - and I have no sense they are going to be given listening to some of the parties who were put up today - I have no sense that will change.
She said EGL "quantifiably fails the group that most needs disability support in this country" and would isolate people in the community, ensuring families got no support.
"So yeah, we're just condemned to another version of the last version that failed. It's particularly disappointing to those people who sit in the disability spectrum at the area where tehy most need help and support and tehy don't get it.
She said it would be more of the same, and she expected families would need to continue going through the courts.
"I'm seeing nothing that gives me any confidence."
Disabled Person Assembly chief executive Prudence Walker said the announcement brought hope that the needs of disabled people would no longer be sidelined.
She hailed the creation of the ministry and was supportive of the the EGL approach, but warned both would need proper resourcing.
"For this to be successful, disabled leadership is fundamental and this needs to be from the very outset - not just something that happens in a prescribed way after the design of a proposal."
"We know from the [EGL] regional trials that it is essential that this new approach is properly budgeted for for it to work."
She also said the Accessibility Governance Board fell well short of what the DPA had been advocating for.
"We know that enforceability is an essential tool for progressing accessibility and without that we will only see small tweaks rather than the transformative change that is needed," she said.
Speaking at today's announcement forum, Te Ao Mārama chair Tristram Ingham said disabled people often felt invisible when dealing with government agencies, and he was excited by the prospect both of the new ministry and the nationalisation of EGL.
He said this was not the end of the journey, instead it was the first footsteps and there was much more engagement, consultation and partnership yet to come.
New Zealand Disability Support Network chief executive Peter Reynolds said the move would raise hopes that disabled people would finally have a government agency that treated them as a priority rather than an afterthought.
"For that to happen, the new ministry must be built by and for disabled people from the ground up. We welcome the commitment that the Accessibility Governance Board will be led by and represent disabled people and whānau," he said.
"We also want to see people with lived experience of disability and disability support providers included in the Establishment Group, and in senior leadership positions in the ministry.
"There's a lot of details still to work through, but we are hopeful that this represents a chance of a better future for disabled New Zealanders, and we will work with the government to realise that opportunity.
Disability Advocate Henrietta Bollinger said the changes were the culmination of the work of many disabled people.
"Disabled people have always had to demand good lives ... throughout, disabled people have always known that living a good life cannot be boxed in or limited to one arena - 'only health', or 'only disability'," she said.
She said the move towards real choice was a deeply personal one, and the system needed to adapt alongside disabled people.
It was also important for the changes to lift up everyone, not just some sections of the community, she said.
EGL governance group co-chair Ruth Jones said it was important that the changes were about adding choice, and were not about taking anything away.
"We're building this waka and we're about to set sail, and I am committed to making sure that everyone is alongside us," she said.
"I'm looking forward to the transition, I'm looking forward to really clear steps and processes and I'm really looking forward to an inclusive governance group that, like a taumata, brings us together."
EGL leadership group member Gerri Pomeroy said it was important that the ministers had heard the kaupapa that disabled people, family and whānau be able to self-determine the life they wanted to lead, and in partnership with government and Māori.
She said the model was closely aligned with the principles of Whānau Ora and there was potential for huge impact on people's lives.
Green Party spokesperson for disability Jan Logie welcomed the changes and said it was heartening the new Ministry would be led by disabled people, for disabled people.
"We hope this signals the start of broader reform such as removing the inequities between ACC and MSD," she said.
"It is crucial that the new Ministry and accessibility framework honour Te Tiriti o Waitangi and the UN Convention on the Rights of Persons with Disabilities. Partnership with the disabled community and tangata whenua will help to achieve transformational change for our disabled whānau."