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.