Candidates Struggle To Get Point Across At Disability Election Forum Full Of Interesting Ideas

Perhaps it was these words, spoken by ACT Party leader David Seymour during his opening statement at the My Voice Matters 2020 General Election Forum, that set up what was an afternoon of much conversation sprinkled with some interesting ideas by the candidates on hand.

But the actual how, why, and when was missing for the most part. What was impressive was the list of candidates that did make themselves available, all of whom came with strong ideas that many would’ve heard before.

From Seymour himself to Carmel Sepuloni (the current Minister for Disability Issues), popular Greens MP Golriz Ghahraman was there, as was the astute National MP spokesperson Alfred Ngaro and New Zealand First counterpart Jennifer Marcroft.

On that front, the My Voice Matters 2020 General Election Forum was a success, but just how some of the many talking points are actually put into action is anyone’s guess.

My Voice 2020 General Election Forum: What You Need To Know

Most of the major hot points were addressed, from education and employment, to housing and transport, as well as accessibility law and the controversial health and disability review.

Due much in part to some dreadfully short time limits on answers by the moderators, a lot of the detail from the answers was lost early on in the forum, and it left some candidates visually frustrated.

Perhaps, if more time had been given, candidates who all agreed that better access to New Zealand Sign Language (NZSL) in mainstream classrooms will be another key area of focus could’ve had the opportunity to expand on the actual work that their particular party is prepared to do.

Discussions about a lack of funding, disability specific teacher training, and accessibility to tertiary institutes were shared amongst the candidates in terms of education and schooling.

The Greens want a greater understanding of disability across the entire education sector, one that also comes with increased funding and caters to the varying levels of support required, regardless of whether a child seeking learning support is intellectually or physically disabled.

What’s clear is that the Greens might have a good understanding of how wide-ranging the spectrum of disabilities amongst learners can be, but like all the parties present at the forum, the exclamation point on how a more equal footing into the education system and prolonged equal learning for disabled children was lacking.

On employment, little to no change from the existing status quo is being promised by the major political parties.

Most candidates agree that there is an opportunity to utilise the new ways of working to reduce some of the barrier businesses feel are too much when it comes to hiring disabled people, such as physical access to buildings.

But in that exact same breath, there was an admission that access to technology which facilitates that is another core issue facing people living in the margins.

New Zealand First is prepared to double down on funding for Workbridge, remaining firm in their belief that the best way to get more disabled people into the workforce is through the pastoral approach that many say is failing disabled people wanting work.

The Greens suggested a quota system, where businesses would need to hire a certain amount of disabled people, while National’s Alfred Ngaro insists that culture and attitudes toward hiring disabled workers needs urgent address.

In terms of the Health and Disability review, it was perhaps the stance of National that is most intriguing.

The party in blue say that they’ve met with the Disability Rights Commissioner to understand why so much of the representation was missing from the design of that controversial report. It’s National’s view that the design concepts around the wider disability discussion in Parliament need a redo, including where the few voices involved in Government workgroups are actually coming from in terms of the community level.

It was also National and the Greens who appeared happy to support the idea of a disability-specific entity in Government. Having such a body has long been a suggestion by some leading disability rights groups and advocates, but Labour, New Zealand First and ACT all opposed the idea when asked the question at this particular forum.

National were also the only party to say explicitly that the disability community is being let down by the current work being done at a political level to address domestic and sexual violence towards disabled people.

My Voice Matters 2020 (and disabled people) Needed More Time

As with any political forum, there is a lot to digest in the wake of My Voice Matters 2020, so much so I’ve had to skip over a fair bit in this review.

For the most part, and considering it was quickly moved to an online only event with all the usual technical hiccups in parts, the forum ran well.

Many of the questions those in the disability community wanted answers to will have to wait for another day as there simply wasn’t enough time on hand or capacity to address them all, but ideas such as increasing the funding for Workbridge (NZ First) to increase disabled people in jobs as well as a clear desire to rule out starting a disability-centric entity in Government by three of the major parties should leave a bit to talk about.

Some candidates will feel they didn’t get enough opportunity to speak about their plans, but what’s clear is that all the major parties have some diverse ideas about the best way forward for what remains over a quarter of New Zealand’s population that actively identify as disabled.

Just what all those ideas will actually look like in practice will depend on the Government of the day post-election, but for Labour at least, they seem content with the work they’ve done so far and are promising to double down on that.

Keeping Promises Important for Disability Community Leaders

Recently, a friend linked me to an article that discusses the portrayal of disability in literature – and it got me thinking about the importance of disability community leaders being progressive and true to its promises.

Reading headlines like “Ardern’s broken promise to the disability community” on Scoop.co.nz might be true for one portion of the community, but entirely untrue for another.

In reality, continuing the current way of doing things will lead to similar results over the course of the next decade, or even longer. Promises must be kept, but that doesn’t just go for the politicians, it goes for the disability community leaders also.

Sometimes I wonder, however, just what that promise and subsequent direction actually is. I hear a lot, and most of it often conflicts with what other groups within the community are saying and/or doing.

That’s not to say the tide isn’t slowly turning or that considerably good outcomes haven’t been achieved already, because nothing could be further from the truth.

Just look at Enabling Good Lives, Disability Pride Week, or the recent Accessibility Concession in the Waikato that provides free public transport for people with disabilities. These three outcomes alone were built on the back of disabled people, their families and the sectors’ leadership working hard and working together.

Keeping Promises Important for Disability Community Leaders

Change, especially societal change, doesn’t happen quickly. It takes years, sometimes decades to achieve. When you add the service providers, governance groups, ministries, and lobbyists into that mix the process becomes that much more complicated. If the disability sector is to be truly progressive, all those parts can remain, but the question really is about how much time, energy and cost will be required to get better results.

At a local network meeting this week, DPA president Gerri Pomeroy said that one of the big things their organisation is working on currently sits in lobbying training and community connectedness.

Representation at the political level and having the right people in those roles is key, but it only serves one part of the puzzle. Many would argue that the disability community, particularly in New Zealand, relies too much on the “nanny state” and constantly blames the political spectrum for life outcomes disabled people are experiencing.

Those people would argue that the Government and the services they provide aren’t going to make society more equitable for disabled people – their only role is to help put the required support systems in place.

That’s where this conversation gets somewhat murky – and it’s completely open to interpretation. Just what is an equal society and what role does the Government play in that?

Robyn Hunt’s recent article in the Spinoff was a great history lesson about disability in literature. She called for “better writing” about disability on all fronts, and whilst that is very true, we also need to be better as a community of people.

Stop all the petty politics and infighting, because, for as much as we hear about how “wonderfully diverse” the disability community is, that seems to go out the window at some very crucial times – like getting that same diversity around the conversational table.

For example, many would argue there was little to no representation from either the Autism or Deaf community in the initial co-design team tasked with developing the new support prototype currently on trial in the MidCentral.

Sure, it came down the track in the various working groups, but initially, nothing. Many would say that isn’t diversity in action, and that leads to the question, who is responsible for ensuring diversity and how do you even ensure diversity?

Perhaps there is some sort of metric system I am unaware of. But if we are to succeed in promoting a diverse and talented community, then the leaders need to be equally as accountable to their own community when such diversity and talent isn’t represented. Otherwise, it’s nothing more than an empty promise.

Who’s Really Representing Disability in Parliament?

Ministers responsible for representing disability rights are having a tough go of it down in Parliament. Why aren’t more disabled people leading the conversation? 

The question of representation at a political level has long been a talking point amongst the disability sector, often one of frustration. There is a very strong belief that in order to achieve more politically, more people who actually have a disability need to be the ones doing it.

Many national organisations and community groups have disabled people in key decision-making roles already. The United Nations also have disabled-people in charge of the conversation for that specific area.

It just makes sense right, surely that lived experience and first-hand learning counts for something? It’s not just about being able to identify as someone with a disability, either. One of the biggest gripes advocates have is how the issues impacting people in the community are so often spoken for by the non-disabled, without any understanding of the real-world impacts of what is involved.

Comments by the Associate Minister of Health in response to yet more reports of funding freezes for Disability Support Services are a good example.

As concerns over continued funding cuts are raised, to hear Julie Anne Genter basically palm them off as nothing more than operational matters would do doubt have insulted many disabled people and families being impacted by what the Ministry of Health is doing.

Ok, ensuring gender pay equity and meeting demand may be seen as simple operating matters, but surely Genter can’t be convinced that adding an additional $72m for these areas alone equals results that deliver greater choice and control for how disabled people get the supports they require to simply live life?

If so, then who is giving her such advice? The non-disabled? Remember, we are talking about 24% of New Zealand’s total population.

That’s no small amount of people, imagine what the number could be had more disabled people been able to participate in the census. Imagine what the results would be had a more regular disability survey been initiated by the Government. What about the extra un-accounted extra 25% of people requiring disability support suddenly coming out of the woodwork?

Carmel Sepuloni, the Minister for Disability Issues and Social Development, gets the best grade rating from those inside Parliament. Her comments on a recent podcast where she said adding more value to the disability workforce shouldn’t, in anyway, undermine disabled people’s right to accessing quality services weren’t only obvious, but one of the more real things a minister has said about this sector in some time.

Meanwhile on the education front, Tracey Martin admitted back in April that despite significant funding boosts, early intervention for disabled learners in education had fallen short.

Who’s Really Representing Disability in Parliament?

The general school of thought hasn’t changed much over the years when it comes to who is ultimately responsible for making the changes needed to better the participation, rights, and lives of disabled people in New Zealand.

The buck stops with Government and it’s their responsibility to make it happen and stop discriminating, right?

This is just as much an awareness issue as it is one of the Ministers involved having the ability to pull the right levers at the right time to get a result that is halfway decent.

Those Ministers aren’t only not disabled, but they grew up in a society that didn’t place emphasis on those forgotten in marginalized communities.

The point being is that shifting attitudes in society goes well beyond what the Ministers are doing in Parliament, but they can be, in a big way, very effective leaders of that conversation. That current track record goes to show that there is a lot of room for doing things differently, starting with a more deliberate and frequent conversation about disability matters.

Like how Government targeted mental illness with the wellbeing budget of 2019, how do they get disability issues to be a big talking point in 2020? It is an election year so the community should expect a bit more and will do doubt get something to talk about from ministers.

Just what exactly? Well, it may just time in with evaluations and decisions on the future of Mana Whaikaha (Enabling Good Lives) quite nicely with an eye toward announcements in early 2021. That’s not exactly a vote-shifter though.

But nevertheless, go to any disability gathering of note that seeks to ask the hard questions of Government officials, usually it’s those very officials dictating the terms of conversation.

That’s what needs to change, pronto.

So-Called Disability Funding Increases Help Nobody

A growing sense of déjà vu and justified frustration can be felt as funding shortages for disability support services show no signs of slowing down – and one of the Ministers involved doesn’t seem to care. 

Disability support providers have once again aired their concerns over Government funding, or the lack thereof, in wake of the Ministry of Health detailing how its $72m financial expenditure needs to be spent this year.

Priorities for the expenditure are gender pay equity and meeting the growing demand for disability support services.

Service providers are unhappy and will continue to face the growing prospect of having to shut down completely in the future. Where this leaves the disability sector and the landscape of service provision is the million-dollar question, and it continues to spark much debate as everyone searches for a way forward.

But ask the Associate Minister for Health Julie Anne-Genter what she thinks and she’ll downplay the situation to nothing more than a matter of operations.

Much of the reaction on social media is calling for sector representatives to ask tougher questions of Ministry officials. Meanwhile, some providers and National Group Organisations (NGO’s) are also not immune to the growing criticism within the disability advocacy space.

Their structure is in question and there is a call for greater clarity surrounding expenditure with growing concerns about exactly how the Government’s financial injections have been used over the years, apart from simply providing services and meeting the rising operational costs.

CCS Disability Action, one of New Zealand’s biggest service providers, and the Disability Support Network (NZDSN), the national umbrella for providers, have both featured heavily in media coverage surrounding the issue of substantial funding shortages impacting the disability sector.

They say that the costs of supporting disabled people are rising and that the recent $72m funding increase for service provision won’t provide the adequate cover to deliver on contracts. The apparent effect of that is fewer clients being accepted by providers, leaving little to no alternative for many seeking specialized supports.

Perhaps this is why the Government announced fairer pay deals for some family caregivers?

According to concerns raised by providers, an increased financial deficit (said to be between $150 – $200m) is also impacting on the further continuation of other important aspects of their work, such as advocacy groups and accessibility work with local councils.

But the questions and the doubts remain as some advocates question the expenditure within these organisations as well as the strategic priorities year-to-year.

Most service providers have a paid board, chief executive, and management staff. Their general mission includes (but is not limited to) providing quality and specialized support services for disabled people and families as well as the sufficient professional training for frontline workers. The concern is over where this sits against the other priorities.

In other realms of social media, some asked why the voice of disabled people and families haven’t been included in some of the media coverage, including a report by RNZ on Monday.

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According to the letter dated 3rd July sent to providers from the Ministry of Health, the priority for funding expenditure this year will be “achieving gender pay equity” and “meeting growing demand”.

Recent claims in the sector back up the concerns around demand raised in the MoH letter, with an estimated extra 20% of unidentified supports having come to the forefront since the launch of the Mana Whaikaha Enabling Good Lives scheme in the MidCental region.

Pay equity pressures have also increased due to the higher minimum wage that took effect in April 2019, this on top of the already rising costs associated with the caregivers pay equity deal.

To play devils’ advocate, one could argue that despite the increase in overall funding sector-wide, providers still face the same issues they did prior and that the direction of where money can be spent doesn’t address the problem. There is also the costs of transport and accommodation, holding meetings with key stakeholders, and all the other usual costs associated with running an organisation, often both with a national office and several smaller regional bases, all of which have those same costs in addition.

Is it any wonder that providers such as CCS Disability Action are expressing anger? In 2016, CCS undertook a nationwide overhaul to re-prioritise how it operated regionally with much more top-down emphasis. Many other providers have done the same and almost all of them have felt intense pressure to cut costs wherever possible.

In April, that pressure increased even more so when MoH was said to be “cutting services by stealth” before being stopped at the last minute from making even more radical changes to funding which would’ve seen $10m in cuts this year and a further $20m next year.

But ask the disability sector and you’ll be told that the support cuts are still continuing.

There is little doubt that the financial strain faced by the disability sector will be one that goes on for some time. Many have become fed up, and if you read between the lines of what the Ministry is attempting to do with its expenditure guidelines, their direction seems to be that of bringing more disabled people into the support system without fully measuring out the costs to support them.

Does anyone else get a sense of déjà vu?

Many who’ve previously denied that the disability sector is in a deep financial crisis are now starting to ring the bells for change, frustrated that ‘all the talk’ is leading to continued poor outcomes. There is a greater willingness from many to question the status quo, and most agree that the disability sector is in a deep financial crisis, one that has been going on for years it seems.

Simply saying so doesn’t begin to address finding a solution, both to the financial issues at hand but also the varying levels of silo within the disability sector itself

Disability Funding Increases Aren’t Actually Helping Anybody

For every small victory, it seems the disability sector is presented with another injustice from a Government (and previous Governments) that is keen on supporting the now infamous “nothing about us without us” disability narrative.

The reality is this. Decisions are being made above and beyond the concerns raised, not just by providers with financial obligations to meet, but by a growing number of disabled people on the ground.

This is not simply down to operational matters and expenditure, it’s about a willingness to engage in an on-going accountable dialogue between all parties. Substantial structural change may be required across the disability sector and who knows what that will look like because, for New Zealand, it will be completely uncharted territory.

The UN found New Zealand to be more than a little lacking on upholding the rights of persons with disabilities on nearly every front and it’s an embarrassment that the accountability of that seems to be a one-way ticket to nowhere.

LISTEN: The Euthanasia Debate & Disability

Euthanasia and the End of Life Choice Bill is a hot topic in New Zealand, but some of the concerns raised by both sides of the argument miss the bigger issues underlying the various factors behind decisions to end one’s life. 

Take a listen to the extended podcast below, or if you prefer a video version, click here.

The Michael Pulman Show is a weekly podcast that discusses social issues and aims to dig deeper into the status quo. Each episode will be posted right here at https://realmichaelpulman.com and is also available on podcast services such as Spotify and Apple Podcasts.