Enabling Good Lives? More Like The Untrained Middle Man

First thing’s first. This blog probably won’t make sense. Today I’m feeling depressed, anxious, and more than a little tired.

If there is anything I’ve learnt over the years it’s that feeling down is a genuine part of the human experience. Cliché terms like “it’s ok to not be ok” are so repeated these days that the first natural step to countering the feeling of being down is to tell yourself it’s ok.

In fact, it’s a sentiment that is almost ingrained in us at this point.

But after a good week or so of feeling a bit down and telling myself it’s ok to be feeling this way, I haven’t exactly pulled myself me out of the rut in ways I would’ve liked. I actually did some self help on Google by searching how to get out of a rut earlier today – which then led me to spending a solid hour writing a two-page document of all the things I’m feeling, good and bad.

I started with the bad because, naturally, that’s been how I’ve felt as of late.

I then stared at the document, and it didn’t take me long to work out why I’m feeling the way I do. It’s not work stuff, nor is it anything too personal. An inherent realization has dawned on me in recent days, and it’s one I’ve had before.

Here’s that realization:

Enabling Good Lives, as a concept, simply isn’t achievable. Now take that with a grain of salt, because it is just one opinion and it comes from a place of frustration. The frustration is the value part of Enabling Good Lives, because what is the actual value here?

At its core, Enabling Good Lives serves to help disabled people manage their support system, by way of their own budget which pays for said support.

What it doesn’t do, at least in my view, is provide the actual tools to understanding how responsible one has to be in order to do the managing part. From its very conception, I was always told that Enabling Good Lives was a way of removing the middle man and truly taking control of support is a requirement for most who live with a disability.

That support can be mild or intense, but the big mantra is about putting the person at the centre of it all. My question is this:

Do we actually understand what that looks like in practice? Maybe my situation is different to most because I come under the “high needs” category, but I often feel like the middle man at the centre of it all, as if the responsibility for delivering the services has shifted away from others and landed squarely in my lap in some way or another.

Do I like that? No, not really. I’m fully prepared to admit that I strongly dislike having the responsibility. If I am to buy into the values behind Enabling Good Lives, I’m meant to be in charge of it all and be self-determining my own life right?

Wrong. That’s not how it works in practice. How it works in practice looks like this:

You go for weeks, sometimes months, without hearing from anyone who actually works at Enabling Good Lives (or the Ministry of Social Development to be accurate). There is the odd check in, you’re told to just ring if you need anything. Other than that, the silence is truly deafening.

It’s assumed that everything is ok, or at least that’s how it feels.

But as soon as there is a budget issue, like when you overspend for a month because you racked up HR time advertising for and hiring a new worker, you’ll be hearing from someone pretty quickly.

Maybe that’s what triggered all these feelings I am having. I felt guilty for overspending. Typically, I let others manage the budget side of things. That’s what they are paid to do, and yes, when it comes to hiring a new worker, your costs will go up for a period of time on the HR front.

So why does it feel like my fault? Why do I feel like I’ll be punished for it someday soon?

It goes without saying, as a disabled individual with high needs that evolve from day to day, I’ll probably only be needing more support as life goes on. Right now, that makes me feel incredibly anxious, almost guilty, because I can foresee the inevitable conversation about managing my support budget, which really means cutting back not getting more.

This is not Enabling Good Lives, nothing close to it. Last week I had a conversation with a fellow participant who also manages his own support structure, and I asked him how he’s finding the process.

Here’s what he said:

“Honestly Mike, it’s been really stressful.”

I can relate. There are so many cogs to the wheel, and from my experience, it only takes one of them to go slightly awry and the whole thing comes down. It is an inherently stressful exercise where you are the middle man.

As an Enabling Good Lives participant, I’m given the ability to manage my support structure. What I’m not given is the tools to understand what that really means on a day to day basis.

That’s something I have to teach myself, on the fly.

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.

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

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.

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.

https://platform.twitter.com/widgets.js

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.

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.

Five Challenges for the Disability Sector in 2019

2019 is a crucial year for the disability sector and its challenges are familiar, from funding to information, to new prototypes and putting the work into all the talk. Here are my five challenges for the disability sector in 2019.

Funding: Providing real “choice and control” support options and room for changing need

Late in 2018, a report published by NZDSN and Deloitte claimed that the disability sector is currently underfunded to the tune of $150million, citing a 12% gap between Government funding and the actual costs for supporting disabled people in New Zealand.

Providers argue that the underfunding across the sector has been a long-held problem and that without increases, their ability to provide more flexible support options will remain compromised. $49.04million is currently allocated to the MidCentral prototype, a much talked about trial that aims to provide more flexible support options and choice to disabled people and their families.

For disabled people and families, it is important that their funding packages are allocated to have significant, not minor, room for changing and increasing care needs. What this really means is having the ability to increase funding if required, and to do it quickly. The belief in many circles is that investing earlier can lead to lower costs for supporting disabled people, particularly if alternative futures other than Residential Care/Group Homes are found. But what for those with changing and increasing needs?

The new system being trialed in the MidCentral, and previously in the Waikato, shows that supports can be flexible in terms of how they are delivered. This is especially true in the cases of being slightly more cost-effective, removing the “man in the middle” in a lot of cases to keep down HR and other managerial costs, but the actual support budgets themselves are often fixed and difficult to increase by large amounts if needs suddenly increase due to prolonged sickness or advanced deterioration of existing conditions.

If NZDSN and Deloitte’s report is to be believed, one could argue that the $150million funding gap in the sector goes well beyond just services. The more discussion, investigation of, and critical evaluation across all levels of funding, as well as comparison with other sectors, will be vital in 2019.

Information: Relaying information to, for, and about the sector in a modern way

How information is relayed to disabled people and families needs a serious shakeup in 2019.

We live in the digital age, and it’s time that news, views, and discussions pertaining to disability are presented in a modern way. Written text via monthly newsletters is no longer the only way information should be shared with the community. Video in the form of YouTube and live-streaming platforms like Twitch and Mixer, pictures via Instagram and Facebook, and audio through podcasts on services such as iTunes are just a few of these more modern ways of communicating. Many organizations and a handful of influencers are well established on some of these platforms, but the majority remain underutilized, and it’s disappointing because this can and should be leading to many job opportunities across the sector, jobs that disabled people are well capable of doing.

Beyond that though, we need to get away from this subconscious fear that information needs to be censored. Information needs to be carefully and strategically released to the community, but it also needs to talk to the people in the community, not just at them. The sector likes to focus on the good stories, but many of the elements for change can actually be found in the bad stories. This information also needs to be accessible for all, i.e available in easy read and accessible to the deaf via captions in videos, but it doesn’t need to be as rigorously controlled as it is. There is often paranoia about misinformation spreading through the community due to the impact that this could have on the so-called “safety” of disabled people, and/or some of the tired concerns around privacy. Information and opinion-sharing throughout the disability sector is important, but it needs to be free flowing, carefully and clearly articulated, but most of all, much, much more immediate.

For all disabled people and everyone else working towards a better tomorrow for this sector, we need to know what’s going on, where it’s going on, and why it’s happening. How else can we critically evaluate and strategise for the future? We could also rely on what the Ministry, their subsequent officials, and a handful of local leaders and influencers tell us, but what about the views of those outside those circles?

MidCentral: Ensuring transparency and effective change for disabled people

“One of the things that has become very apparent to me and is very clear in my mind is that we’ve got, I would say, decades of not just unmet need in the community but unrecognized need”.

Those were the words of Lorna Sullivan, head of the Connector/Tuhono team in the MidCentral.

Currently, numbers in the MidCentral indicate that 500 disabled people and families have already come on-board the prototype since it’s launch in October 2018. This is, already, a similar amount of people that the Waikato demonstration of Enabling Good Lives has supported, but over the period of three years, not two months. It is clear that the numbers of people coming onto the prototype in the MidCentral are higher than allocated, and on current trajectory, expected to rise again.

Sullivan also urged providers to move away from notions that responses to disabled people’s needs can be standardized.

“We have to shift away from this idea that we are a service”, Sullivan said.

What has become absolutely transparent since the launch of Mana Whaikaha is that providers, for the most part, have been woefully underprepared for the change that the prototype is trying to give to disabled people. This was something that was predicted and has come to fruition, funding gaps or not.

The challenge now, for Sullivan and her team, appears to have become not only about ensuring that they can work alongside disabled people to create better outcomes, but it’s also becoming about taking providers by the hand and directing them on the type of changes needed to their own systems. Furthermore, connectors in the MidCentral haven’t had the ongoing training and development due to the increasing numbers coming onto the prototype, and Sullivan says that this needs to be addressed early in 2019.

Leadership: Lack of strategic, on the ground, by the people leadership

The state of leadership across the disability sector is seriously lacking, and in 2019, this presents perhaps our biggest challenge, both in terms of finding fresh leadership and investing in it.

Also, using social media to demand change from Government and other mainstream agencies for things like access whilst using the term ‘ableism’ is inherently not leadership, and shouldn’t be recognized as such. The increasing discourse and labeling of non-disabled people as ‘ableists’ needs to stop, fast. This point is as equally applicable to this particular challenge of leadership as it is to the previous information talking point.

The biggest problem here is investment, both from a financial perspective and a hands-on perspective. There have been many strongly-willed, capable, and determined leaders that were initially projected to be the big change makers in the disability sector. Some of them have, and continue to do amazing things both in New Zealand and internationally, but it would be fair to say that without some form of financial incentives moving forward, i.e jobs for disabled people where the development and enhancing of their already strong leadership skills takes place, these potential leaders will be forced to look elsewhere and go down alternate avenues where their talents won’t be fully realized in order to find an opportunity that financially rewards them.

This has already proven to be a big loss for the disability sector, and if it continues, it will hamper the efforts of what new support models are trying to accomplish in theory, because as it stands right now, terms like “social investment” and “capability” are areas of the sector that are big on words, but little on action. People need and deserve to be paid for their time, another reason why further investment across all areas of the sector is needed, and potential investment that could see big returns.

Less Hui, More Doi: For the benefit of the people

One of the things Lorna Sullivan raised recently was the deep sense of isolation disabled people and families are feeling from their own community. This is also something that is a familiar conversation point around the leadership tables, and yet we still have this problem.

This isolation is as much a social issue as it is a service issue.

For one, many families don’t know who to turn to for information, for the support that is both hands-on and effective, as well a general understanding of how to navigate the system. People are still going to have to navigate through the disability system in one way or the other to access supports. Connectors are only one part of the puzzle, and even that requires a small amount of navigation and awareness to access in the first place. There needs to be more support and resourcing, not only for the navigation aspect, but also understanding the practical “how to’s” when it comes to managing support budgets, hiring and firing support workers, and employment law.

Simply having such teaching resources available on websites isn’t enough. Because often people won’t search for help until they actually need said help, and this is often at a time when additional, hands-on, responsive, and effective support is most required. My guess, however, would be that many people don’t care about these things. They just want the flexible support options that work for them, owned by them, and directed by them. But let’s be real for a moment, in order to achieve something like that, you have to have a certain amount of knowledge and resource behind you.

Practicing what we preach isn’t just about changing how support is delivered, it’s about ensuring that this support actually addresses not only the current need, but perhaps the underlying needs as well, and a large amount of this requirement is in understanding. To do that, you’ve really got to look at the individual and their unique context, and that’s where you design a support structure that truly works for them. That takes a lot of time, experiment, and often a lot of going back to the drawing board at each individual level, so it’s vital that more investment of time and understanding is implemented across the sector.

It isn’t about investing heavily early, it’s about finding the sweet spot for each individual. For that individual, their lives aren’t a box on a checklist to be ticked off, their lives are uniquely theirs, and they are relying on this sector to listen to, include, and advocate for them.

An audio version of this blog can be found here: 

https://soundcloud.com/realmichaelpulman/5-challenges-for-the-disability-sector-in-2019

All resources used in the creation of this blog can be found here:

https://www.nzdsn.org.nz/wp-content/uploads/2018/12/NZDSN-Newsletter-December-2018.pdf

https://www.nzdsn.org.nz/wp-content/uploads/2018/12/FINAL_Developing-a-Workforce-to-Support-Disabled-People-and-their-Whanau.pdf

Lorna Sullivan – Thinking and Acting Differently for System Transformation

http://www.enablinggoodlives.co.nz/system-transformation/transformation-papers/system-transformation-updates/september-cabinet-papers/

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.

The Realities Of Managing My Own Disability Support

After nearly two years of being the employer and client of my support staff, the lessons I’ve learned along the way were ones that I was completely unprepared for, and other disabled people may be too. 

Support for disabled people to learn about how to be good employers is going be a critical aspect of the new system which prototypes in the MidCentral beginning this October. Some aspects of that new system have already been practiced in the Waikato under the Enabling Good Lives demonstration, and I can say that for myself personally, I would have benefited greatly from some hands-on training prior to becoming an employer of my support staff.

Not that people actually have to take on this role if they don’t want to, they will have a choice about that, and I suspect that many will leave the direct managerial responsibilities to a third party. In a lot of cases, that may be a wise decision because being the direct employer does come with a lot of time requirements, and disabled people who choose to go into the new system actually want to spend more time focusing on other things.

There will be options to have a provider manage all the day-to-day HR requirements, including payroll and the hiring/firing aspect. You can also choose to have something of a hybrid of both, where you or your family can manage the money side of things and just pay a monthly invoice to the provider.

Like others in the Waikato during the EGL demonstration, I was in the unique position to have experienced the realities of self-managing using both of these approaches.

When I first transitioned to living independently, I hosted my funding in a bank account but chose to have a provider manage payroll, rosters, and the hiring of new staff. Six months after doing things that way, I transitioned away from a provider and took on the direct employment of staff, which included drawing up contracts, negotiating pay rates, organising rosters, and doing payroll every fortnight. 

Each has its own pros and cons, and it will come down to the personal preference of disabled people and families based on what is important to them. Many don’t want the hassle of taking on the responsibilities of being an employer, they just want to be in control of where and when the supports are delivered.

But at what cost? 

When I was using a provider, I found that it wasn’t always as simple as saying I wanted X, Y, and Z on this particular week. When you couple that with the costs that providers will charge for their own overheads, often it can end up being slightly more expensive per fortnight than it would if people took care of all the management themselves. 

The difference wasn’t major but it was enough for me to justify making the leap to being an employer.

But the struggle with that is learning about the responsibilities that being an employer presents, including the negotiation aspect and the complexities of employment law. In my case, I didn’t feel adequately supported to make that transition but it was one I needed to make nonetheless due to the need to remove the impacts on the budget that the overheads of the providers were having.

Part of the issue, as always, is ensuring that disabled people and families are informed about what services are out there. For example, in the Waikato there is a company called FuturesNZ that can help with employment networking and solutions. I heard about them through my Connector/Tuhono, and there are also plenty of resources online that can help with building employment contracts.

Disabled people who choose to be employers must be equipped with everything they need to know before making the transition into what is a position that comes with some serious legal ramifications if it goes wrong. Because when it does go wrong, and I know this from personal experience, the legal costs will come out of your support budget, therefore having the potential to impact directly affecting your ability to pay your support workers.

This is where things like capability funding for groups of disabled people and families become important, and it’s great that this will be available in the MidCentral during the prototype. It would be great to see a series of workshops that provide that hands-on employer training and advice for disabled people and families who choose to take the leading role in the day-to-day support.

The Realities Of Managing My Own Disability Support

Apart from the gigantic learning curve, my experience being directly responsible for the employment and management of my support staff has been a rewarding experience.

The important thing to remember is that the people who support you are just that, people, and they’ll all bring different skill sets to the table. They’ll have days where they exceed your expectations and days where they may not meet them, and how you manage all the different factors of the employment situation is ultra important because all these factors contribute towards what can be an incredibly vibrant or terribly toxic working relationship. Another big lesson I’ve learned is about the importance of being a good communicator and having the ability to have those tough conversations when required.