By Chris Ford*
Opinion - It's great to have a Ministry for Disabled People, but more needs to be done.
Last Friday, I sat in front of my computer screen to watch the announcement by Disability Issues Minister Carmel Sepuloni and Health Minister Andrew Little on the government's proposed disability sector transformation with great anticipation.
They didn't disappoint in their proposal to create what has tentatively been called a Ministry for Disabled People, something which has long been called for by myself and other disability activists for over 30 years.
I endorse the government's proposal to create a ministry which will have responsibility for both policy advisory and disability support services (DSS) funding.
This means that at long last, there will be a government agency, led by and for disabled people, to ensure that the voices of disabled people like me, our families/whānau and disability allies are carried through the corridors of power.
Until now, we have had an Office for Disability Issues (ODI) which sits within the Ministry of Social Development (MSD) and is (from what I've seen myself) literally an office with around 10 full time employees with a number of part-timers as well.
The Office has done what it can to influence government policy on disability but has been hindered by a lack of resourcing and the fact that it sits within an existing government agency, MSD.
Furthermore, ODI has placed great store in extolling the virtues of disabled people's leadership. While what I'm about to say next is no reflection at all on the performance of the directors who have led the office who have all been excellent disability allies, it has, ironically, never had a director who self-identifies as a disabled person since its creation in 2001.
After all, the disability rights movement has long promoted the mantra of 'nothing about us, without us.' Having a population group ministry which is not led by a disabled person would be akin to having a non-Māori heading Te Puni Kokiri or a non-ethnic community person heading the Ministry for Ethnic Communities.
Frankly, the disablist mindset that disabled people can't lead or determine their own destinies has had its day and now we must transition into a space where disability leadership is role modelled from within government itself. I personally know that there are many able and capable disabled people who can and will take leadership roles when the ministry is formally established next year.
In saying all this, I'm aware as well that there are some disabled people out there who are cynical about the establishment of a new governmental bureaucracy dedicated to disability, especially one still tied to MSD as this new entity will be.
I realise that many disabled people (myself included) have ended up having to fight decisions made by MSD's biggest service grouping, Work and Income New Zealand, over the years and that's why I would have preferred it if the new ministry was created as a standalone entity.
However, government took this decision on the basis that it would supposedly be too costly to create a completely autonomous body, something I personally don't buy.
Nevertheless, the creation of a new ministry specifically focused on disability is a really good start, despite it being situated within a larger bureaucracy that has not had good relationships with some disabled people at times.
Another aspect of the announcement that needs further examination is the pledge to introduce accessibility legislation to Parliament by mid-2022 and to create a new accessibility advisory board mainly led and dominated by disabled people.
Like many, I welcome the government's pledge to introduce accessibility legislation, something that the Access Alliance, comprised of many disability organisations and individuals, has called for for many years.
However, it seems that government wants to create legislation which will have less teeth in that, for example, the board will only be able to make recommendations for change to areas such as transport, communications and information and building standards rather than create legally enforceable standards.
What I and other disabled people and our organisations will be pushing for is the development of a more interventionist, activist piece of legislation rather than one which is just merely symbolic.
Enabling Good Lives rollout
From my perspective, the most important aspect of the announcement is the rollout of the Enabling Good Lives (EGL) way of providing disability supports. EGL will enable disabled people and their families/whānau to exercise greater choice and control over what level of support they receive and when.
Hopefully this will end the onerous system of needs assessment and service coordination (NASC) assessments which determine what disability supports that people with impairments such as myself and around 40,000 other disabled New Zealanders receive through Ministry of Health funding.
I can only say that this system is excessively restrictive in that, for example, when I needed new wheelchairs some years ago, I had to wait 12 months between the time that my previous powerchair died and self-propelled chair had largely bitten the dust before getting a new one. During that time, I had to undergo an assessment where one of the unbelievable questions was 'What would I do if I didn't have a wheelchair?'
Still, questions remain on how much is the government prepared to stump up in terms of funding to ensure EGL's success. Indeed, one of the main lessons that came from the earlier EGL pilots in Waikato, Mid-Central and Canterbury is that any transformation must be well resourced and supported to ensure its long-term sustainability.
Personally, I hope the interests of DSS workers are not overlooked either in this process in that while the system is made more flexible, there is a need at the same time to create steady, good paying jobs with great conditions for people who genuinely believe in the EGL kaupapa.
I could go on in terms of other areas that Friday's announcement didn't traverse, with one outstanding omission being a pledge to address the inequities between our Ministry of Health and ACC funded DSS systems - it seems that the government has yet again parked that discussion for another day.
Nonetheless, it seems that government has made a good start but they need to be continually pushed by disabled people like me and others to do the right thing and create a well-funded disability support system which serves the needs of all disabled New Zealanders while creating the non-disabling society we all seek.
*Chris Ford is a Dunedin-based freelance writer and researcher. The views expressed in this piece are his own.