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.

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.

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.