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.


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)

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.

All Systems Go In The MidCentral As Mana Whaikaha Officially Kicks Off

The time for talk is over, Mana Whaikaha is a go, and the latest round of implementing a new disability support system that aims to give disabled people more choice and control begins.

Around 150 people in the MidCentral are already slated to be a part of the early stages of the prototype, and outside of the region, people will be watching the rollout keenly with a sense of cautious optimism.

In the back of many minds is the question of what the end result of the “try, learn, and adjust” approach in the MidCentral will mean for how disability support is delivered in other regions around New Zealand once all is said and done. But for now, the team in the MidCentral will have two years to iron out the kinks in what is a bold new way of both implementing and delivering support to disabled people and families.

Like Christchurch and Waikato before them, the MidCentral has the opportunity to test out what phrases like “choice and control” and “person-centered supports” look like in practice, but this will be the first look at an implementation of a policy for disability supports has been designed alongside members of the disability community.

The seeds for change on how disability services are delivered were first signaled in 2008, so it has taken ten years of long, tireless, and often thankless work that’s been performed amongst either growing skepticism. That hard work needs to be acknowledged, as does the clear benefit of a co-design process, something that has never happened in the development of disability policy in New Zealand before.  

Mana Whaikaha, as the prototype will be known by, means to reflect people’s strength, influence, and dignity, as well as their life essence. The brand was co-designed in 2018 by a group of disabled people, whanau representatives, providers, and Government officials who wanted to decide on branding that would represent the new disability system, with a key emphasis being on waka, the Maori translation for boat.

The waka, according to branding information, is a positive and uplifting symbol with disabled people and whanau having the control they want for their lives.

Mana Whaikaha will have 16 connectors available right across the MidCentral region. The connector will work alongside disabled people and families in the new system to access services and support, whilst always acting as an ally. In previous demonstrations of Enabling Good Lives, the connector role has worked well, and there is every reason for it to do the same in the MidCentral, provided workloads are managed well and each participant in the MidCentral gets adequate support based on the context of their needs.

Mana Whaikaha To Work In Space Of Ever-Growing Hope And Concern

Concerns amongst some disabled pundits remain over the cost of implementing Mana Whaikaha beyond the MidCentral.

Some say that the cost of implementing such a system nationwide would be too expensive for the Government to consider and that by the time it comes to regions outside of the MidCentral, the product would effectively be watered down and be unable to provide enough flexible funding options for real choice and control versus what may be possible in the existing system already. 

Others argue that certain sections of the disability community were left out of the process of designing this bold new system altogether, including the deaf community. The team in the MidCentral have countered this by employing at least one connector with NZSL expertise. Concerns over how workers rights will be protected remain, as do concerns about how capped the funding model for individuals will be. 

But there is no doubting that despite the concerns, MidCentral has a big opportunity to get themselves on the front foot over the next two years.

In terms of funding for participants in the MidCentral, information on the new Mana Whaikaha website suggests that decisions will be made by a funding coordinator. Prior to this, participants will be required to fill out a funding form, with an estimate of the amount and cost of the support being a requirement on that form.

This suggests that it will be crucial for both the person applying for help and their connector to have a good idea about what the package could look like prior to going for approval.

All Systems Go In The MidCentral As Mana Whaikaha Officially Kicks Off

There is every reason to be equally as optimistic and cautious about the rollout of Mana Whaikaha, but the foundations of delivering quality support for disabled people should always be about individuals and their own contexts.

Delivering quality support for disabled people is about taking into account the context in which those supports are delivered, and how those supports act as the backbone to everything else that occurs in that person’s life. To understand that on an individual level takes time, and it is important that the connectors in the MidCentral are not pushed for time so they can truly build that relationship and subsequent understanding for the people they are supporting.

And thus, as the exciting next phase of how the disability support system implements its changes begins, we must always keep the people, their contexts, and what works best for them at the absolute forefront of our minds.

The best of luck to the team on the ground in the MidCentral.

What Happened To My Voice Matters?

My Voice Matters has fallen into obscurity after such a positive wave of momentum prior to the 2017 General Election. 

The campaign aims to engage disabled voters with their politicians and to have both parties involved in positive discussions about disability issues.

At the “My Voice Matters” candidates forum in September; a large crowd was on hand to discuss a variety of issues including access legislation, housing, and employment. Politicians from the majority of the major parties were present, including long-time disability rights MP from the Green Party; Mojo Mathers.

But since the election; My Voice Matters has fallen into obscurity, and it could be a big lost opportunity.

What Happened To My Voice Matters?

The beauty of My Voice Matters is that it doesn’t only encourage the disability community to get out and vote on election day; but it also educates on how to do so. Without some of the information that My Voice Matters provided, the turnout rate of disabled voters in 2016 would’ve been even worse.

But it’s not just about voting, or knowing how and where to vote. The power of having a space for open, political dialogue within the disability community is vital. Such discussions can’t just be had by certain providers and group organisations.

My Voice Matters was something fresh; something that also aimed to utilise modern social media technologies like Facebook and Twitter through live video. The key to all of that is how accessible social media is to most disabled people, and also, that it taps into a huge number of disabled people who may not have entered the political discussion before.

Whilst My Voice Matters may advertise itself as a mover and shaker during election time; what it does in the interim needs to be thought about too.


The investment behind impending Disability Support overhaul

With just $1.8million set aside for the major overhaul to disability support, the Government could well be making similar mistakes that it has in the past,

Some people say that the intent behind the Government’s proposal for change is not to the real benefit of disabled people in New Zealand.

Frankly, it’s hard to argue with that. The way the Government choose to take the transformation of disability support will be interesting, but  there is going to be losers, and a lot of them in New Zealand’s disabled community.

Calls for total system change have been rife since a report back in 2008. Then, concerns were that the support system restricted people’s choice and control over the supports and structure of their lives.

The proof of similar mistakes occurring again can be seen in a cabinet paper that proposed system transformation to disability support.

The entire project has a total financial investment of $1.8million. But claims that that sum is an investment by Government are also up for scrutiny. According to the cabinet paper, the $1.8million used to fund the system transformation project has been taken from a $3million contingency already established by the Government. That bucket of $3million was set aside for supporting further work and development of Enabling Good Lives.

A breakdown of the investment Government will put into DSS overhauls. Photo: Michael Pulman

This move can be seen in a couple of different ways, however. EGL (Enabling Good Lives) is a demonstration project that has been running in Christchurch and throughout the Waikato. If the system transformation works, using principles of EGL, the need for these two demonstrations no longer remains. If it doesn’t, chances are that the demonstrations will be forced to either stop, or continue minus the $1.8million batch of funding, therefore running at a loss of sorts.

Government have made it clear that any system transformation for disability support has to be cost-effective. In other words, make it work with $1.8million and offer little alternative. In the words of Sacha O’Dea from the Ministry of Health, the immediate future is that “everything stays exactly the same”.

The Minister for Disability Issues, Nicky Wagner, says that culture change within the disability support system will be significant. Within the last week, Idea Services (the operating arm of IHC) cut services that will affect 1200 users of disability support. When pressed on the matter, Wagner said that funding has increased across the disability sector.

“Idea Services will take a strength based approach and will focus on community residential and day services”, Wagner said. “In actual fact, funding for Idea Services has increased and this is absolutely in line with the increases that we have had right across the disability sector”, Wagner added.

The cabinet paper shows that an increase in funding has occurred, at a level of 4% over the course of the last ten years. That increase is spent across the Ministries of Health, Social Development, and Education; meaning a small impact at best.

So the question remains, can an overhaul that truly incorporates greater choice and control be a successful one for disabled people in New Zealand? It’s hard to imagine.