Crisis Mode: NZ’s Poorly Planned Disability Transformation

Little over a year since the newest big pilot launched, one of New Zealand’s biggest players released a report stating that the disability support sector has entered full crisis mode.

NZDSN certainly pulled no punches in its latest report, stating that “the disability sector is in crisis at every level” in an explosive overview that estimated $574m shortfall in funding.

Whether you agree with the report or not, you’d be a poor fool to say that it simply reflects the financial interests of providers and attempts to scaremonger the Government.

The proof of the effects this funding model is having on real disabled people couldn’t be clearer.

Such reading makes a mockery of the “nobody left behind” and “choice, control, flexible” values that have underpinned the most ambitious change to disability support system since the closing of the large institutions. If anything, the uncertainty and stress on the system matches (if not beats) that of what was experienced in the nineties and early 2000s.

NZDSN estimates 15,000 people within the regions where new support pilots are taking place (Waikato, Christchurch and the MidCentral) have missed out on getting some kind of disability support.

15,000 people, more than a handful (making somewhere around 25% extra unmet need) in an approach where $24m of taxpayer money was spent on development.

But what exactly was designed and how well was it actually developed in the first place?

That’s the question that will be asked by the appropriate parties, and as much as it seems that they will be the ones tasked with easing the uncertainty ahead, they were let down by some pretty shoddy advice and a clear lack of awareness from those disability community representatives that themselves forgot about or didn’t understand the reality that was burning below the surface.

Chaotic Feeling Underpins Life In New Disability Pilot

Words like “try, learn and adjust” that came out of the MidCentral project were as clear a sign as any that there were few answers on what to expect, but more importantly, they provided absolutely zero clue on how to address the issues that were coming.

Just over a year since launching Mana Whaikaha, the feeling on the ground in the MidCentral has been described as one of chaos after long periods of time with deep-rooted uncertainty.

Such sentiments are echoed in previous and ongoing work in other parts of the country. The Real Michael Pulman understands that connectors in the Waikato have been told that their jobs are only certain until June 2020, with further announcements not expected to be made until earlier in the year.

In his interview with RNZ on Monday, NZDSN boss Dr Garth Bennie was exactly right when he said that the pilots were originally about testing the designs, offering disabled people a choice of their supports rather than taking from a set menu.

One must also ask how cutting runaway costs could possibly have ever been managed with the growing demand not being a prospect, but a certainty. To even attempt to answer that, there needs to be an honest admission about what was going on behind the scenes.

It was never simply about “Enabling Good Lives” for disabled people and their families. It was about attempting to adhere to a set list of principles and do it with very little to no extra funding with tangible impact in the long term.

What’s been a constant reminder in 2019 is that disability support services are flying blind into the future. Perhaps this was always the case, perhaps this is identifiable in the wider health and social service sectors, but it’s dangerous to assume that small parts of the country can successfully show enough result to transform a system nationwide.

And yet, that’s the very assumption that’s come from all this, whatever is happening in these new spaces will soon be the status quo for all. It worked well for persons X, Y and Z so let’s build on that and repeat the formula.

There is merit in arguing directly against that. The poorest outcomes in the new pilots should be the examples used when decisions are made about what to do next.

That’s not all positive and rosy though is it? Now more than ever there seems to be much logic in stopping, having a big rethink and getting it right if the basic human rights of many disabled people are to be met.

All that starts with an admission that what we’re doing currently just isn’t working.

NZDSN REPORT: https://www.nzdsn.org.nz/wp-content/uploads/2019/11/NZDSN-Sector-Briefing-Final-14-11-2019.pdf

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.

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.

My Mental Health: Knowing YOUR Role

The musings of a 27-year old battling his mental health demons in therapy every other week. 

When I look back at my journey with depression and anxiety, I see it as one of consistently broken promises. I broke promises to my friends and family, but most importantly, I broke a ton of promises that I’d made to myself.

I said I would do a lot to tackle my “problems”, but in actual reality, I only managed to do a little bit.

When you’re depressed and anxious, you’ll kick yourself for only doing that little bit and you forget one very important thing, that you actually did that little bit.

We so often look at issues with mental health as things that need fixing or changing.

It’s the classic case of being in a bad place and wanting to get to a better one, but not really knowing how to do so, or especially, why we want to get there.

Two failed attempts at legitimate therapy and six sessions into my third go, I still can’t answer either of those questions, so sorry to disappoint.

One thing I do know is that this time it feels different, almost like it’s a case of now or never. I quite like having to look at it in that way, even though I know that all hope isn’t lost if I fail again this time.

Another strength I’ve developed (one I sincerely wish I had before) is the ability to accept that it’s ok to not be ok. That phrase is used a lot in advertising for mental health, but it really is true. Once you accept that these things you’re feeling aren’t A) negative and B) your fault, you’ll be able to take a much deeper look at where it all originates from.

I’ve learnt the theory behind how the heart operates from a person’s past experiences. Again, another wishy-washy sort of thing to try and understand, but if you’re able to look at the current objectively, it makes perfect sense.

Logic can often go out the window when you’re in a dark place. It is NOT logical to just say you’re depressed and want those thoughts and feelings to go away, because you haven’t considered how. It is also NOT logical to just go to the doctor and get anti-depressants prescribed. As someone who’s been on these anti-depressants since 2014, I can safely tell you that whilst for most of us they are necessary, these tiny little pills are just one part of the puzzle.

Solving that puzzle doesn’t mean you aren’t depressed or anxious anymore either, again I am sorry to disappoint. Use your logic, ask yourself what else you need to do on top of taking any medications.

The answer you’ll tell yourself will probably go something like this… “I don’t know”.

If you don’t know, ask someone else, because remember that you’re likely being illogical as you’re still coming at this question from that same dark place.

My Mental Health: Knowing The Role

A demon that I’ve tried and subsequently failed to tame is the mental ability to “switch off”. I’m told that advocates, activists, and those passionate about making a change to their community, often struggle in this space more than most.

I can certainly identify with lying in bed and watching television but being drawn to my iPhone simply so I can check if there are any “updates” to the issue I might be writing about that particular week. I can also identify with the urge to log onto Facebook and see if there is “just one more comment” on that blog I posted.

A turning point for me came when I started to turn down that desire a little.

It’s something that will remain one of my main challenges moving forward, that ability to “log off” at the end of the day and tell yourself that enough is enough.

I can tell you that for most content creators and journalists, two things of which I am, that is an extremely difficult skill to master because social media is where both your community/engagement is and where the news is breaking. Both have very short attention spans, so you’ve got to be “quick to post” more often than not.

The logical way of doing things is to plan out your time better. Know when you’re “on” and when you’re “off”.

When I was in that dark place I willed myself to always be on but all I ended up doing was being off. That means that I slept, a lot.

Sleep is an integral part to better mental health in my view, but it needs to be done right.

Perhaps the biggest challenge that these mental health issues have presented me with is the very real threat that sleeping more than you should presents. It can, and will, start to take over your life. It is one of the most common signs to depression and various other mental health issues, and one I know first-hand.

Don’t Be Someone Else’s Scapegoat

To close out this blog, I want to offer you two pieces of advice. The first, be very sure about what your role is in the different situations you’ll come across in life.

For example, if you are a persons’ manager but also their friend outside of work, be very clear about how you make decisions that could impact that person. You can be friends with the people you work with, honestly. But look at things logically and from the perspective of what’s best for business.

The second you step into that friend role and advocate on their behalf, as the manager, you set yourself up to be the scapegoat. People love to shift responsibility for their misfortune, and if you put yourself in that position, it will impact your self- esteem and make you depressed in a second.

Know your role, ask yourself who owns the situation at hand. If you own it, do something about it. If you don’t own it, realize it’s that person’s responsibility to make the change.

The permission you give will have a direct impact on the emotions you feel. When you are depressed, anxious, frustrated, or sad, how can you possibly think that you yourself are owning these emotions?

My final piece of advice is to realize that perfection doesn’t exist.

Striving to be the perfect person in a world and one that can help everybody will leave you with nobody. In other words, stop thinking about what other people want you to do, and do what you think you should do.

As the saying goes, imperfection is only measured by what we perceive to be perfect. What would be perfect for you right now?

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.

It’s Time To Question Our Disability Leaders (Not Just Government And Providers)

The wider disability community has every right to question the effectiveness of its leaders and the advice they give to officials as a $100m and counting overspend on Disability Support Services continues.

Don’t just blame the government or say that disability support providers are simply trying to protect their own interests. This problem is far greater than that, and crying about it won’t help. Accountability needs to occur and hard questions should rightly be asked.

This should serve as a strong reminder to sector leaders that they simply didn’t get the actual resources required to deliver on the promises that they, and the Government, were making to the community. 

The disability sector now needs to find a way to get harder and demand that such an oversight never happens again.

The fallout from the report over the weekend has been intense as disabled people and sector leaders react to what’s become a major issue with serious ramifications for the Disability Support Services landscape moving forward.

If cuts to services were to be made on the scale that was being planned, it would make a mockery of what has been a substantial amount of work done over the course of many years to ‘Enable Better Lives for disabled people and families.

Plans by Government officials made for chilling reading that would make even the most positive of disability advocates cringe.

Cutting, wherever and whenever possible, the in-home personal care and community participation supports, on a mass scale was just one of the desired directions that officials were going to take in order to decrease spending by $10million this year and a further $20million in the years after.

The time for the disability community to ask some hard questions of its own leaders is now, and I’ll tell you why.

An Oversight On The Actual Realities Of Disability Support

This has been a substantial oversight on the part of those leaders, the officials in Wellington, and many of those involved in table discussions that have chewed up so much time and investment that many people rightly felt only scratched the surface of what was actually happening in the disability sector.

The resulting actions played a key part in a near $100million overspend on services.

Those actions didn’t have enough accountability for the appropriate parties, they lacked the evidence to suggest a long-term solution other than stating demand-driven support models are the ‘right thing to do’, and all decisions were primarily made on a faith-based approach when in reality there was no reason for decision-makers to have any trust that officials wouldn’t attempt to cut back on supports.

It’s all very well and good to point the finger of blame factors like provider HR costs, the pay equity deal, rising residential service costs, increasing high and complex needs, or more people accessing services. All of these factors are real and have valid concerns, but they aren’t new problems.

This is why I label it an oversight and the reason why many should now be questioning the advice that has been given to Ministries.

These factors didn’t appear to be addressed in the funding models that were accepted by those responsible for ensuring that disability support is delivered in a way that lives up to the principles driving system change.  

Principles and flashy policy documents are just words on a page if the product or service doesn’t deliver in the way promised.

If the disability sector was as united as some say it is, then why was Enabling Good Lives/Mana Whaikaha left out of discussions surrounding the radical plans to cut $10million in support for the next year alone?

Surely people being affected by changes to NASC were going to be asking ‘what next’ and looking at how they could utilise what was only ever referred to as a ‘PILOT’ by top-ranking officials.

That ‘PILOT’, as well as the Waikato EGL demonstration, were both in holding periods until further decisions were made about rolling out a new system nationally.

That rollout was never certain and yet all the discussion suggested that a model such as this was going to be the way of the future, again, acting in good faith that the appropriate levels of funding would be provided once the level of evidence supporting such a system was provided.

Funding requirements in sustaining the new disability support options (EGL/Mana Whaikaha) for disabled people as well as keeping the status quo are not, and were not being met. This is no longer a point of opinion but unquestionable fact.

It’s also a fact that advocates and some organisations were raising from the very outset. Those leaders, our leaders, heard those concerns and many advocated fairly, yet we still find ourselves facing substantial cuts and organisations are labelling the current situation as a ‘crisis’.

Or is all this being hyped up so certain entities can protect their own interests? You be the judge of that.