Paula Tesoriero, Disability Rights Commissioner Interview

The following is a full transcription of an interview with New Zealand’s Disability Rights Commissioner, Paula Tesoriero.

Michael Pulman: How are you feeling coming into 2020?

Paula Tesoriero: Well, I think we’ve got a huge number of challenges for the disability sector and in an election year, as always, it’s an opportune time to be talking about those in the public sphere. While we’ve got a number of challenges, I also think it’s a huge year for opportunity and so I’m feeling energized.

Mike Pulman: In 2019, there were some negative headlines, but it was a positive year in some ways with free public transport in some parts of the country and then Robert Martin. What was your reaction to that news?

Paula Tesoriero: Oh, I was just delighted to wake up to the news. I think that it’s been a real boost for the disability community. I think it’s also thoroughly well deserved. I think it really highlights for other disabled people, for the New Zealand public at large and internationally, actually, about what people with learning disabilities contribute to the world. It’s a really significant deal for obviously, Robert, but also for our community.

Mike Pulman: Yeah definitely, and I guess moving into perhaps a national discussion about disability, something like this is good to help inspire that?

Paula Tesoriero: Yes, I agree completely.

Mike Pulman: Moving into this year, an election, hopefully, there will be a lot of focus on this sector because it desperately needs some help. What are some of the areas you want to focus on this year?

Paula Tesoriero: I think that there is, as you know, and the people listening to this know, the list of things that we need to deal with as a country around disability are really significant so it’s always hard to narrow it down to a core group of things, but that’s the only way we make progress, I think. So the key things that I’ll be focusing on this year and in no particular order are the education reforms, as we know our education system is not inclusive and it continues to be a key area that disabled people and their families talk to me about so I’m going to continue the work that I was heavily involved in last year and continuing to make numerous submissions and hopefully influence the government to really use these reforms to deliver an inclusive education system. So that’s one area, the second area is that there’s a range of things that sort of set what I call loosely in a health bucket that I think this year we critically need to make progress on.  One area is far better supports for people with neuro disabilities. Last year, I did a lot of work with fetal alcohol spectrum disorder community and really started to learn much more about the significant challenges faced by people who face day in their families and how that group who are not eligible for disability support services by virtue alone and having it face day fall through the cracks at so many stages. So, we’re doing some work together and with the Ministry of Health to try and address that, also with the Minister for Disability, she’s also in that package as is the system’s transformation work. There’s also the funded family care and changes that I hope we’ll see this year that vote on last year. Then there’s the level of funding for supports disabled people. So there’s not the total sum of issues in there and the health backup. We’ll be finalizing an independent monitoring mechanism. Our report to parliament in the lean on New Zealand’s examination in relation to the CRPD date. And you know, we’ve done a lot of work in the second part of last year, numerous hui around the country with disabled people and so I’m really looking forward to finalizing that in the first part of this year.

Mike Pulman: What was the general sense around the country in terms of what we are doing in that CRPD space?

Paula Tesoriero: The overwhelming take on the report is that yes, of course, there’s been some improvement in some areas and the government have announced some reforms across particular portfolios that impact the disability community. But by and large, there’s still quite some way to go across almost every article. It was pretty humbling to hear people’s experiences and get a sense of how frustrated they are while also acknowledging that there are some good things happening. Violence and abuse also, this wasn’t a topic that I made a priority when I came into the role but it’s become a priority for a number of reasons. One, I’m not satisfied that, with the current reforms underway, there is enough of a focus on disabled people. Secondly, I commissioned some work last year to pull together the information that we know domestically and internationally about violence and abuse towards disabled people. One of the key issues that disabled women raised was violence and abuse. So I then commissioned some further work right at the end of the year, which I’ve now received, making some recommendations about what I can do in my role to impact this. And then look, finally, it’s going to be a year with not only the election but the referendum on the end of life choice. We know this is something that I have talked a lot about. And, you know, I sort of welcome discussion on this. I’ve been very clear. I hope that my views about the safeguards and particular issues relate to this bill. So, you know, I think often the debate becomes whether or not we should give an assisted dying regime. And that’s not really the issue here. The issue here is this particular bill. And finally, and this is the real finally, there are a number of reviews that we made submissions on last year. So, for example, the mental health review, the Health and Disability System Review, Child poverty, etc and I will continue to be monitoring those and also having ongoing.

Mike Pulman: Sounds like a busy year ahead and I’ve got a number of questions about this. This work in violence, is it just in terms of relationships?

Paula Tesoriero: No. I think that one of the really important impacts for disabled people is that it’s not just about angles of domestic violence. It can be admitted into settings, community-based care settings, violence and abuse more broadly.

Mike Pulman: I guess part of a national discussion about disability, and the real benefit of that, is hearing from sections of the community that we haven’t even seen or considered?

Paula Tesoriero: I absolutely agree. I think that fetal alcohol spectrum disorder community is one such community. It’s a hugely dedicated group of people who advocated for years toward changes. We have a real opportunity through early intervention, through getting in and providing support for young people and the families to hopefully change their trajectory. I think that this is an area which, again, New Zealand doesn’t talk about the alcohol spectrum disorder in the way that we should. To date, there has been some focus on prevention. But actually, what we critically need in New Zealand now is a focus on support that people will get. That’s what I’m trying to support the community to do, to really focus the government’s mind on support for these people. But you’re right, we have a big opportunity to talk with different groups in our community and make sure that we all have a really good understanding of disability right across our sector.

Mike Pulman: I want to ask you about the End of Life Choice Bill. What would the percentage be between people you’ve heard from who are against this bill versus those who might support it?

Paula Tesoriero: I can’t really gauge that in terms of the general population. But in terms of disabled people, the people who have communicated with me by far overwhelmingly are against it. Very, very few people who have identified themselves as being disabled have contacted me saying they disagree with my point. I think what I continue to encourage people to do is really get to grips with the contents of this bill because my worry is that we will have a discussion this year about whether or not we have an assisted dying regime. Actually, that’s not the question here. I think it’s really important for the disability community to understand the specifics of this bill because if we are going to have some kind of regime in the future then we need to have one that is really robust and really safe. One where we have a way of guaranteeing that there won’t be wrongful deaths.

Mike Pulman: How did you feel going out an advocating so passionately against this? What was the experience like for you?

Paula Tesoriero: I think, you know, this role is a role where, you know, I do feel a weight of responsibility and that there may be times that shows. It’s a privilege to be in this role and so I take every opportunity I can to influence better outcomes, but this particular debate was hard. This seems to be an issue where people are not afraid to make quite personal attacks. My view on when you resort to making personal attacks is that it’s a way of not really engaging in the issues, so I had to just put up with the fact that there were some personal attacks coming my way and at times, as you know, on social media there can be some fairly brutal ones. I really see that those sorts of attacks are just people’s inability to actually debate the issues.

Mike Pulman: Ok, but what’s the plan if the bill does pass? What then?

Paula Tesoriero: I’m still working through exactly what I’ll do. I certainly intend to be part of the conversation. I will continue to say much of what I’ve said before around my concerns, around safeguards and the way in which this bill operates. I’m really focused on trying to enable disabled people to live good lives. All the challenges we’ve got this year, the end of life choice is a really significant issue for New Zealand. But ultimately, it will be one issue, one part of a series of things I work on. I’m looking forward to the public debate. I just really hope that all New Zealanders, and in particular our community, can focus on the substantive issues and not let this become a personal attack on people, because it’s not a way through this.

Mike Pulman: What was your reaction to the NZDSN report in late 2019?

Paula Tesoriero: I’m sure like many in the disability community, I’m really concerned. I think we have a really, really serious issue in New Zealand where a whole lot of things come in a way for disabled people that doesn’t enable us to leave these lives. If you look at the poverty stats, you look at the employment stats, you look at the educational outcomes, the housing situation, and then the issues around funding for sports, we’ve got a real issue in New Zealand where we need to support disabled people better. I think that that report really highlighted some quite significant issues. So like you, I was pretty concerned, I’ve read the report a couple of times now, and it’s something that, you know, we need to continue collectively working on.

Mike Pulman: Were you at all concerned that the voice of disabled people was missing in that report? Was there much consultation from disabled people because there were suggestions that it was very much presented in the interests of providers.

Paula Tesoriero: I don’t know in terms of specific consultation. I know that in my discussions with NZDSN have always been driven around outcomes for disabled people. But there’ll always be that tension and service providers can’t and don’t speak for disabled people.

Mike Pulman: Last time we talked, you said that we need to have a discussion and cost out what it’s going to take in order to develop a system that delivers. Do you feel we are any closer to that?

Paula Tesoriero: I think that we’ve got some way to go in having the EGL principles truly embedded across government. I continue to listen to disabled people’s experiences and I welcome people sharing those experiences with me. I think that what I saw, particularly last year was the coming together of a number of really significant disability-related issues in New Zealand. I think we’re at a point in time where there’s a far greater awareness across government of the issues. I’m not convinced there are solutions by any stretch. These are the issues facing disabled New Zealanders. Here is the evidence. Here’s what we understand. So actually, there’s an onus on the government to ensure that they are adequately addressed.

Mike Pulman:  Yep. I totally agree. All right, well we’ll leave it there Paula. Thank you for joining me. I appreciate it. We’ll talk soon, I’m sure.

Paula Tesoriero: Thanks, Michael. See ya.

Saving & Sustaining Disability Supports In 2020

Buckle in and get ready folks, 2020 should be a year like no other as it pertains to saving and sustaining the disability support system. 

Before we can look forward, we must, as always, take a look back. By any reasonable measure; 2019 was a year of positive stories that should’ve aided optimism heading into what many believe will be a make or break decade for a sector all to often forgotten by the establishment.

In fact, 2019 was pretty great, really.

There was free, yes free, public transport for disabled people in the Waikato, something that was pushed over the line by local advocates. There was the emergence of The Cookie Project as a way to increase disabled employment that appears to be working and, to top it all off, Robert Martin was recognized for his services to the disability community with a knighthood on the New Year honours list.

Indeed, it was a year of highlights if you were willing to look past some of the negative headlines that were shining a light on funding challenges facing existing support systems and the viability of new ones.

And here we are, fresh into a new decade which kicks off with an election year, meaning it is the year of promises. Oh, can’t you feel the sense of optimism?

MP’s Must Show They Care About Disabled People

There will be all the usual discussion of voting and how disabled people make 24% of the population, which means every effort should be made to make the voting process as accessible as possible to the forgotten “voice”. Familiar? Yes.

There will be discussion, perhaps even a few throwing their hat into the ring, surrounding “actual disabled people” being involved in the political establishment, locally and nationally. Familiar? Yes.

Then there are the actual promises themselves, by way of policy and the visions behind such. In other words; there are the actual roadmaps, explanations and commitments behind all the meetings that will take place. Familiar? Yes.

Nothing in 2020 will be new, at least from the spoken word, but it’s the action part where the guts of whatever direction is taken will or won’t be found.

The various MP’s responsible for such matters on both sides of the house have had ample opportunity to engage with disabled people and their families about the issues impacting them, but like usual, the next eleven months prior to the polls will be when most discussions are had.

Make no mistake, there is a difference between politicians hearing and seeing the stories from their own eyes versus hearing it through reports sent by advocacy groups, representational orgs and the ministries implementing systems.

One could argue that the Ministry of Health (MoH), in particular, is coming into 2020 facing the most distrust from the disability community that it’s ever endured. How to turn that, distrust at one level and uncertainty at the core, will be no easy task.

In order to win voters, Carmel Sepuloni, the Minister for Disability Issues, and Associate Health Minister Julie Anne Genter, need to front the criticisms that came in 2019 head-on and actually discuss them.

Just how did the MoH come so close to making such radical cuts? How can disabled people, many of which make up eligible voters, trust that there is actually a sustainable system in place to ensure it doesn’t become a possibility again? How much further investment is needed, not just to cover all basis, but assume sustainability?

All key questions need to be asked because what happened in April 2019, and the lead up to it, wasn’t the MoH just deciding to be bad people and take care away from disabled people. Quite the opposite, in fact, it was something which the powers that be determined was a requirement in order to be cost-effective.

The only way to ensure such an occurrence doesn’t happen is to invest. Either that, or finally admit that the system may not be as inclusive as many would have you believe.

In their hard-hitting report towards the end of 2019, NZDSN (New Zealand Disability Support Network), advocating on behalf of providers, said that there needs to be a national discussion about what a “reasonable and necessary” taxpayer contribution towards Enabling Good Lives and what its sustainability is.

The question then becomes, if it turns out that the new system isn’t sustainable, then what?

That’s why, whichever way you lean politically, 2020’s election will likely see policies that promise a significant uptake in investment towards the Disability Support System (DSS). There will be an announcement as to the future of Enabling Good Lives, and this could potentially include a timeframe for when the “new system” rolls out nationally.

It’s hard to see what else either Labour or National can do in order to make a splash, and by any sense of scale, this is an area where a fresh coat of paint is needed. Whilst Enabling Lives may represent the great new frontier, behind how the principles are being implemented reeks of the old ways of doing business.

It all becomes about how much either party and their responsible ministers truly care about doing something in this area.

The absolute worst result would be a middling, half-baked and long-term vision that is light on detail. You’ll likely get “over three years” type of talk from politicians, but if there is no substance behind whatever is said, alarm bells should rightly ring come November.

Also, let’s not forget how political the End of Life Choice bill and Legalization of Cannabis will become in terms of the disability space if they haven’t already. These two conversations have the potential to overshadow some of the crucial questions that need to be asked surrounding how support for disabled people is delivered and sustained in New Zealand.

Be very wary of that, every effort must be taken to ensure that all voices are heard and that there are actual answers to what those voices will ask.

Ministry of Health Offers Little Assurance To Disabled Community

The Ministry of Health may have fronted, but the detail on what’s next for Disability Support Services was light and uncommitted during the latest round of conversation.

During a live stream hosted last Thursday, the Ministry of Health shared its learnings and attempted to get close to something of a vision for the future after it held public events around New Zealand that engaged with the disability community. Continue reading Ministry of Health Offers Little Assurance To Disabled Community

The Disability Conversation Must Be Open To All (Even Non-Disabled)

As a writer who occasionally attempts to delve into the issues facing the disability community, the argument of being allowed to speak about something is very real.

Whether spoken or not, the frequent rule is that your opinion only counts if you’re a part of something or afflicted by it. If you aren’t such, you should be cautious about what you say and cautioned before even saying it.

Attempting to simplify the complicated is a tough task because within that complication is often a subconscious reason and chain of history that led to it in the first place.

Five years of writing about disability issues such as funding shortages, leadership, service providers and disabled people’s sexuality has, so far, been anything but simple. It’s taught me a hell of a lot, but it’s always been a struggle.

In fact, I can’t remember a single blog or article that was simple to write and never has there been one that was simply received by what is a very complicated community. Continue reading The Disability Conversation Must Be Open To All (Even Non-Disabled)

Disability’s Leadership Achieving Mediocre Outcomes

We in New Zealand’s disability community desperately need something to change because the frameworks in place are clearly not having the desired outcome that our leaders say that fight so hard to achieve.

Yet another damaging report into the state of New Zealand’s health and disability services sector was released last week, highlighting a sorry trend of underfunding and a lack of leadership across the board to address it, amongst many other things.

What’s worse is that no disabled people were involved in the official Health and Disability Review Panel that conducted research and produced the 300-page report, confirmed to me by various sources.

Nothing new for a major disability issue then, just more non-disabled people talking the talk.

What a sorry state of affairs it is, what a poor reflection of a disability community that has so much more to give than what it appears to be giving. This poor reflection is a symptom of many wrongs, but don’t just blame it on that big buzz word popularly referred to as ableism, take a look at what the report actually says.

The lack of decision-making frameworks and subsequent lack of accountability due to the confusion isn’t just a flashy sentence in this report, it’s true to one of the biggest issues present in the current system.

I hear your counter-argument, “oh but the ignorant non-disabled designed it so it’s ableist”. Incorrect, you’re attempting to simplify a truly complicated problem.

The inequity of outcomes in this, a system that strives to “leave nobody behind”, sure has left many behind and has been consistently under-resourced and poorly managed for years.

Just as it was in the 90’s and early 2000’s when the powers that be realized there wasn’t enough support workers, housing, or funding resources for the hundreds of disabled people formerly in institutions such as Kimberly, the last few years have presented similar challenges as systems have tried to reinvent themselves.

What we’ve steadily seen is that the capacity to deliver on the promises of greater choice and flexibility has been seriously stretched, now at a point where it’s becoming impossible. Take the small portion of disabled people and families lucky enough to be experiencing the best of new person-centred support trials like Enabling Good Lives and toss it to the side, we are talking about a drop in the ocean.

Those are the cold hard facts and don’t let the flashy dressed insider’s tell you any different.

Disability’s Leadership Achieving Mediocre Outcomes

As I wrote back in April, serious accountability needs to be put on the self-elected leaders who represent the voices of the disability community. What exactly are they saying in the ears of ministry officials? Are they actually getting the chance to say much of anything at all?

When I spoke with the Disability Rights commissioner back in May, she urged the sector to come together and figure out what it really takes to cost out and design the system it’s hoping to deliver for disabled people. Those comments might be obvious but they are in themselves a solution because some of the poorest outcomes delivered in a system that is currently not resourced adequately are in some ways indicative of the wider problem.

My guess would be that Ministry agencies deal in dollars. After all, it’s the financials that drive all areas of Government, or are we still stuck in the old mindset that a marginalized community simply presents its case and the resource to deliver on its needs suddenly appears like magic?

The kicker to all this is that here I am writing this piece as a self-identifying disabled person. That’s relevant and let me tell you why.

I’ve had my faith in this system and our leaders for a long time.

Do I get any other choice? No, actually I don’t. For me and many like me, the average every-day disabled New Zealanders, we the rely on professional, flexible and adequate support that hasn’t been effectively costed out due to rushed and conditional guidelines in its design.

I can tell you that a lot of us have no choice but to bend to the realities of that system, and whilst it is better, it’s entirely unthought out.

The caregivers pay equity deal being a fine example. How many disabled people do you know being impacted by this? We didn’t choose to give support workers such appallingly low pay rates to begin with, because we had more faith in the importance of the work that these people did.

Yet here we are in the reality that staff turnover is still high, perhaps even higher, and here we are in the reality that uncertainty is really the only key expectation for the disability support system.

Sound familiar? If our leaders were doing what they are tasked to do, we would at least have some clarity about what’s next. Then again, maybe a few out there are lucky enough to have such information.

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.

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.

Work vs Exploitation: Fair Pay For Disabled Workers

Disabled people and others in marginalized communities have long been exploited for cheap, even free labour. It’s time the discussion of fair pay was had, as is the case elsewhere. 

According to an NZ Herald report yesterday, a woman with a disability is being paid $2.30 per hour by Air New Zealand to untangle earphones, something that is perfectly legal in New Zealand.

It is one of those simple yet divisive issues, how much should a person be paid to work? Throw the disability label into the equation, and you’ve got an even muddier conversation to have.

I want to start this by stating a simple and obvious fact. There is a difference between working and volunteering.

Working in a professional environment deserves fair and equal pay, regardless of if a person is disabled, or a woman. I make that connection because in the past 24 hours I’ve seen and read the justifications of some 900+ disabled people being exempt from the minimum wage being made by the same people that have argued the gender pay gap being discriminatory.

Like that gender pay gap, legal wage exemptions for disabled workers is just as discriminatory, so please, take a look at yourself in the mirror.

The barriers that disabled people face in finding work are well-known, as are the wage exemption issues placed on many of them. It’s something that has been allowed to happen thanks largely in part to the stigma that is still attached, primarily to those with an intellectual disability.

That stigma, as was repeated to me just yesterday, is that those with a disability don’t have the skills to command the minimum wage.

Sure, I am willing to believe that this is the mindset of many a mainstream employer. I am also willing to believe that for a lot of these 900+ disabled people, the pay isn’t the primary motivator for doing tasks such as untangling headphones for an airline company. I would assume that for some it is about giving something back to the community, having a sense of purpose, getting that feeling of achievement, just doing something to stand up and be counted.

My bigger point here is that this is known by employers, by agencies, even by some disability organisations, and it is being exploited.

Combining this pay, in some cases even as little as $1 per hour, with the Work and Income benefit, is another justification some are trying to make. I get your point but you are missing the bigger point.

Such is why this has become such a divisive issue and one that the disability community needs to address. What should come of this is a simple question, that being, is this what we are willing to accept for our people? There is already enough discriminatory practice out there, are we willing to sit back and say this is ok because of reasons X, Y, and Z?

Furthermore, accepting the premise that some may have limited skills, why don’t we also talk about why that may the case, is it a lack of ability or a lack of investment from the very start?

Dress it up and justify it any way you like, but this is an issue that has already been overlooked for far too long. Maybe now we can address this, not only in terms of what is fair and justifiable, but what is an actual job versus tokenistic cheap labour.

That’s something to ponder as this country heads into a budget week where Government is expected to put aside billions in resource for other areas.

Inadequate Disability Support Is Ruining One Too Many Lives

The disability sector now has a choice to make, either throw out the entire script and start again or consider the true lack of options it has in a support system where costs will continue to rise and packages won’t be enough.

The real financial deficit facing the disability support system is well over the $90million originally projected, double that figure and you might be getting slightly close to the actual number. Some reports estimate around $150million total, but people The Real Michael Pulman spoke to this week suggested the system is looking at a $190million gap.

That’s a result of Government not giving enough funding despite injection, the mismanagement of that funding, the pay equity deal, rising demand and subsequent costs of providing support to disabled people, just to give a few examples.

Then came Enabling Good Lives, and later on, Mana Whaikaha. Two pilots that are made of up everything that disabled people and families need, except the funding as it turns out.

Inadequate Support No New Thing With EGL & Mana Whaikaha

The concept of and the principles driving Enabling Good Lives/Mana Whaikaha are fantastic, nobody can question that.

Of course, disabled people should have more control over when and how they receive the care supports that help them be in the best possible position to have as equal a life as possible, compared to the non-disabled (or whichever term you prefer).

But if those principles and the people who talk about them so much can’t influence a better delivery of this new system given all the information and downright proof that it does deliver those better life outcomes, when it works for the individual, then surely something is amiss here.

This new system, if it is to be worthy to its name, must give people the sole determination of how much support they receive. Financial implications for the Ministry be damned.

The example of Faisal Al-Harran in Mana Whaikaha is no isolated incident, but it’s not primarily the fault of just a lack of funding, it’s also down to the decisions that are being made by the NASC (Needs Assessment Coordinators) in the MidCentral and also, clearly, the failure of the connectors working with this man.

Going back to the very beginning of Mana Whaikaha, those who helped co-design the scheme had already aired much concern over the NASC being involved at all. Their objections were likely overruled, and then came the realisation that there weren’t enough connectors, but at that point, it was all systems go, around the time when we started hearing the talk of a ‘try, learn, and adjust approach’.

Those involved took what was being injected financially from Government and went about implementing Mana Whaikaha from October 1st 2018.

Then, the firestorm happened, on a scale that should’ve been predicted but wasn’t.

That firestorm was demand, well over a decade worth of demand for more adequate support that had been unmet, to the point where families were literally uprooting their lives and moving to the MidCentral to sign up. People like Al-Hassan have quickly discovered that Mana Whaikaha and this “bright new future” for disability supports was filling a gap, but not enough of a gap to truly quantify in the “better life outcomes” that he and his family were likely looking for.

But is anyone surprised, really? Likely not, but just who’s responsible for stories like Al-Hassan’s is up for debate.

Stories like this are not isolated, and as time has gone on, it’s become harder and harder for people, especially those newly entered into these new schemes, to get the outcomes they are looking for. In the Waikato, some who entered the Enabling Good Lives demonstration early on (including myself), particularly those with high needs, were able to get more flexibility than those who came later on.

Dig Deeper, Bring The Real Truth To Light 

In the wake of April’s revelations that the Ministry of Health was stopped in making radical changes to disability support that would’ve seen $10million cut in the first year and a further $40million the next two years, the same familiar arguments over Government treatment of disabled people have come to light.

In his piece for the Spinoff, long-time disability advocate Chris Ford wrote that he wanted to see a disability support system that allows disabled people to “lead flourishing lives as participating citizens, with the full support of the state”.

But where does the responsibility of Government really sit in the wider picture of improving life outcomes for disabled people? The financials serve as a basis for enabling disabled people to access the supports and the equipment they need to be on a level playing field with everyone else.

All disabled people want and should be asking for is to have the same access to communities, education, services, and employment as their non-disabled peers have. It’s not much to ask and it doesn’t take a mountain of money, but a monumental shift in attitude.

In terms of Mana Whaikaha and the wider Enabling Good Lives direction, the Government is already looking at the costs of this and comparing them to the older services landscape before. If that is the direction and what the Government are mostly looking for in their evaluations, it paints a dark picture moving forward.

The entire system, not just the shiny new parts of it, cannot remain sustainable without a significant funding increase and couldn’t well before now. It requires a long-term commitment to ensure that disabled people and families get the supports that they feel are enough.

That’s the only way this is going to be a successful system for the people. You can have the most flexible support system in the world, but if a person isn’t getting enough to meet their needs, how effective is it really?

For example, if a person needs 24-hour care but can only get 10-hours per day, that system is a total failure for that person.

It’s not about filling gaps in the system to keep providers happy, it’s about filling the needs of the people that this entire sector should be striving to support. We aren’t just talking about the financials either, we are talking about attitude, and for all the talk of a more inclusive and self-determine disability support system in New Zealand, the majority of attitudes in the wake of this sad saga have been anything but.

There needs to be a spoken acknowledgement that the Government can afford to provide substantial funding increases to solve a lot of these problems, and then some. Government does have the purse, a very large one in fact, but do we as disability leaders have the gusto to call their clear and obvious discriminatory practices into question?

It’s one thing to say it at a group meeting or create a petition, it’s quite another to go through each individual case of this systematic abuse and bring it to light. Do that, and you’ll get a clear picture of what’s really going on here.

Stop Trying To Control The Language About Disability

How a person with a disability chooses to talk about disability or identify with it is an important conversation, but it may not be one that will impact much change in the hearts and minds of the so-called ‘ignorant’ non-disabled. 

Language of identification seems to be a discussion that just won’t go away. This comes as no surprise, how people choose to identify is a deeply rooted and basic right, and the disability community is one that is constantly fighting to preserve the rights of its people, but the tension amongst some groups tends to boil over at times.

That tension can be counter-productive at times, and in the eyes of some, it matters little in comparison to other the discussions being had surrounding other areas of the disability rights movement.

The question then becomes, does it really matter how a person with a disability chooses to identify or talk about disability?

The short answer is yes, but it is everybody’s personal right to determine how they label their disability/condition/impairment in any space. Nobody should be told, especially by another disabled person, how to identify or what language is the correct to use when talking about issues impacting the disability community.

Within that community is a diverse amount of beliefs, some think of language and identification as ultra-important, while others think it’s an argument with no real depth.

Playing devils’ advocate for a moment, I’ve met plenty of non-disabled who often express to me their deep fear about language when it comes to me, ‘the disabled person’. They say that they are scared and don’t know how to talk about disability or how to approach it when confronted by it in public.

One person I spoke to this week about the subject of language and disability made some really good points that further confirmed a thought I’ve had for a long time about how the invisibility of disabled learners in school tends to aid the confusion and fear for non-disabled later in life.

“I’ve never had personal experience with disability at all, so how do I know the correct way of talking about it? Most of those kids were in the special unit at school and we never saw them.”

Some people I’ve spoken to had gone through their entire lives without ever experiencing a connection with a disabled person in any shape or form until having a conversation with me.

Can we really blame them for their ignorance? Of course not, disability is not an understood or desired part of mainstream society. The latter shouldn’t be a priority, disabled people shouldn’t be desired based on disability alone but they should be accepted as a part of the norm, regardless of whatever disability they have.

The words disability and disabled were mentioned four times in that last paragraph alone. It isn’t the word that is the issue, rather the thoughts associated with it.

Stop Trying To Control The Language About Disability

The point is that for those of us who experience disability, trying to control the narrative about disability is completely impossible to achieve. Furthermore, why is it our right to decide how we are looked at and talked about?

That’s where the ‘nothing about us without us’ terminology has real problems with me.

Some disability advocates want to have it both ways, change the labels and the language, as well as the thoughts that come as a consequence of it. But there is no certainty that the thoughts associated with disability by the ignorant will change, there isn’t even any proof that it would help a little bit.

Much of these conversations serve to make disabled people feel better about themselves, and perhaps that leads to the biggest question of all, why do we place so much personal emphasis on how we are officially described?

There is no real proof that a change in the official description would make us feel better about ourselves because it’s only ever been a discussion that’s occurred within the disability community for the most part.

The answer to increased participation and inclusion in mainstream society for disabled people isn’t found with how they choose to identify within or outside of the disability community, it sits with the ideals associated with the very sight of them, ideals that often aren’t triggered until being confronted by them.

For us, the disabled, trying to enforce a certain type of language doesn’t address that. Identify how you choose, do what you choose, but don’t expect everyone else to beat to the same drum.