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.

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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.

Work vs Exploitation: Fair Pay For Disabled Workers

Disabled people and others in marginalized communities have long been exploited for cheap, even free labour. It’s time the discussion of fair pay was had, as is the case elsewhere. 

According to an NZ Herald report yesterday, a woman with a disability is being paid $2.30 per hour by Air New Zealand to untangle earphones, something that is perfectly legal in New Zealand.

It is one of those simple yet divisive issues, how much should a person be paid to work? Throw the disability label into the equation, and you’ve got an even muddier conversation to have.

I want to start this by stating a simple and obvious fact. There is a difference between working and volunteering.

Working in a professional environment deserves fair and equal pay, regardless of if a person is disabled, or a woman. I make that connection because in the past 24 hours I’ve seen and read the justifications of some 900+ disabled people being exempt from the minimum wage being made by the same people that have argued the gender pay gap being discriminatory.

Like that gender pay gap, legal wage exemptions for disabled workers is just as discriminatory, so please, take a look at yourself in the mirror.

The barriers that disabled people face in finding work are well-known, as are the wage exemption issues placed on many of them. It’s something that has been allowed to happen thanks largely in part to the stigma that is still attached, primarily to those with an intellectual disability.

That stigma, as was repeated to me just yesterday, is that those with a disability don’t have the skills to command the minimum wage.

Sure, I am willing to believe that this is the mindset of many a mainstream employer. I am also willing to believe that for a lot of these 900+ disabled people, the pay isn’t the primary motivator for doing tasks such as untangling headphones for an airline company. I would assume that for some it is about giving something back to the community, having a sense of purpose, getting that feeling of achievement, just doing something to stand up and be counted.

My bigger point here is that this is known by employers, by agencies, even by some disability organisations, and it is being exploited.

Combining this pay, in some cases even as little as $1 per hour, with the Work and Income benefit, is another justification some are trying to make. I get your point but you are missing the bigger point.

Such is why this has become such a divisive issue and one that the disability community needs to address. What should come of this is a simple question, that being, is this what we are willing to accept for our people? There is already enough discriminatory practice out there, are we willing to sit back and say this is ok because of reasons X, Y, and Z?

Furthermore, accepting the premise that some may have limited skills, why don’t we also talk about why that may the case, is it a lack of ability or a lack of investment from the very start?

Dress it up and justify it any way you like, but this is an issue that has already been overlooked for far too long. Maybe now we can address this, not only in terms of what is fair and justifiable, but what is an actual job versus tokenistic cheap labour.

That’s something to ponder as this country heads into a budget week where Government is expected to put aside billions in resource for other areas.

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.

New Zealand’s Responsibility To Empower Harder Disability Activism

A strong level of disability activism and the willingness to exert it should be a big responsibility for all interested in making real change

Activism (by way of a Google search) is officially defined as “the policy or action of using vigorous campaigning to bring about political or social change”. By its very nature, activism can be uncomfortable for many as it can disrupt many of the social norms (or the established way of behaving). 

Translating that to New Zealand’s disability community, what comes to mind about activism is it being an act carried out by the few, not the many. Disability has so often been referred to as something ‘special’ or ‘unique’, so then we should expect that it would be a good or well-behaved medium, which makes translating that into activism a real challenge. 

Advocacy (don’t mistake that for Activism) is strong in New Zealand and there are many people doing what they can to utilise their own platforms in a way that inspires others and creates a narrative about themselves and the community they serve. But as the narrative increases, so does the diversity of opinion about what needs to happen in order for disabled people in New Zealand to have their rights met.

Diversity is all well and good but when it becomes so noisy it leads to a weak level of productivity. Talking about a problem leads to an understanding, but simply understanding that problem only remains productive for so long before it becomes stale, and there is too much of that staleness breeding within the disability community currently.

Real acts of activism are limited to the brave few who often put themselves in danger of being removed from their own community in order to make the waves necessary to lead to a chance of change. Furthermore, what is deemed as the ‘right’ type of activism is so subjective that it divides many.

Compare that to overseas countries like the United States as the best example, established activist groups like ADAPT regularly take their local politicians to task over a lack of basic civil rights for disabled people. The strategies that ADAPT use in their activism campaigns have often included acts of civil obedience.

Don’t Believe The Lies, NZ’s Disability Activism Is Weak Compared To Other Countries (Even Now)

It’s hard to break down exactly why activism for the rights of disabled people doesn’t catch on as well in New Zealand. That’s not to say it doesn’t happen, but it is certainly lacking behind the example mentioned above. 

Firstly, the disabled population is significantly smaller, and secondly, New Zealand has no official Government legislation that protects and uphold the rights of disabled people, whereas countries like the United States have the ADA (Americans with Disabilities Act).

New Zealand, like many other countries, is required to work with the Convention on the Rights of Persons with Disabilities, and recently a report was sent back to the United Nations responding to over 100 issues found in how the convention has worked in this country. 

The easy answer is the difference in culture, but perhaps the real truth in all of this is a basic misunderstanding of what our human rights actually are. If you don’t understand those rights, how can you tell if they are being taken away?

The gross examples are, of course, recognised and acted on by both sector leaders and representatives.

Stories like the one of Robert Martin (New Zealand’s premier disability rights activist and a sitting member on UNRCP committee) aren’t unique or isolated, but they’ve got the power to capture the hearts and minds. Martin, an intellectually disabled man, was abused in state care institutions over the course of a 27-year period. He was influential in the shutting down of those institutions at the turn of the century and has since gone on to become the poster boy of the disability rights movement in New Zealand, and a major influence internationally. 

Empower, Invest In Activism For New Zealand’s Disability Community

But back in New Zealand, in 2019, attitude towards making change for disabled people still has a certain structure to it, and it’s one that desperately needs to change.

There seems to be an unspoken rule that in order to make a change, it must be done as a collective for the most part, where there is a general agreement that something is wrong and must be addressed.

The ‘mission statement’ or desired end goal can also be too general to understand and subsequently put the processes in place from a community perspective to make it happen (working together to put accessibility at the heart of a more inclusive Aoteroa New Zealand).

This is what makes for slower processes and ultimately weaker outcomes because nobody is really held to account more often than not.

Having established legislation and real consequences to not upholding it would empower a lot more people to have more gusto behind their questioning of why things are the way they are. Perhaps those people will be even more confident that airing their concerns will play a part, if only a small one, in making a change for the better. 

Again, the voices within the disability community are not silent, but they can be so much more empowered.

People will always be in situations where their rights are being taken away, nothing about that is exclusive to disability. As a result, there will always be a need for people from all aspects of society to be willing to challenge the structures that were put in place that lead to their rights being taken away in the first place.

Having a strong understanding (outside of just your own situation) and developing a voice that can be used outside of the traditional comforts of a group meeting or working group should be the responsibility for everyone in the disability community.

To not do so is irresponsible and it passes the buck onto the next person. There is already too much of that happening. 

PERSONAL: The Importance Of Focusing On How I Contribute

The only things in life that you can control are your words, actions, and feelings, but you can also influence a lot of outcomes with your ability or inability to think critically about what you do and don’t do in certain situations. 

Sometimes a choice isn’t within your own control, ask a large majority of the population working in careers they despise if you don’t believe me. A lot of the time, we may have to act in a situation where the choice has been made for us and this can lead you to a situation of attempted influence or actioned ignorance.

That’s a very technical term to describe a simple concept. How you choose to react, deal with, and respond to a situation where the choice isn’t always just in your hands, as you’d prefer, can often reflect whether you’re prepared to rise to, or have settled to accept and ignore.

The truth is, you can do both, but the latter will leave a far more negative taste in the mouth of those around you, particularly the ones you will have to answer to.

Being Clear, Concise, And Patient 

Like you, I find myself in situations that challenge my thoughts and decisions multiple times every day. Perhaps that’s a reflection on me because I haven’t worked out the powers of command and control as yet.

But that raises the question, would I really want to live in that sort of world?

As much as challenging situations can be stressful and lead to all sorts of emotional responses, it’s important to do two things during that. One, be analytical about how you handled that situation when reflecting, and two, realize that you were probably a big part of the reason that situation occurred.

For example, last week I texted one of my support workers with a very vague message that led her to believe I wanted immediate action. If I had been more specific about what I was actually asking and saying, then she wouldn’t have thought I was demanding for a response right there and then, and thus, she wouldn’t have felt annoyed and that I had suddenly changed my plans at the last second, with the direct implication being that I required more work out of her.

That’s just one example of many lessons I’ve learnt recently involving how my own direct action, inaction, or lack of clarity can lead to confusing and annoying situations.

I’d have saved myself, and her, a lot of anxiety by simply being more clear, and perhaps a little more patient.

Focusing On How I Contribute To The Wider We

The events in Christchurch recently sparked a lot of conversation about the acceptance of different cultures and religions.

I’d like to see the same conversations happening around how we interact with one another, the things we say or not say, and how we deal with conflicting viewpoints because it’s not too dissimilar from the current unity being shown on that front. Like this example, we shouldn’t have to wait and experience such tragedy for the glass ceiling on these other important conversations to finally be blown off.

Some may say that leaning on the notion that accepting so much is beyond our control may be of defeatist thinking.

That’s where the power of conversation comes in. As an entire society and especially in the online spaces, we need to slow down, think, evaluate, and encourage ourselves to not let frustrated or bitter emotions get in the way of simply having a conversation about the issue/issues at hand. The same goes for non-issues, those positive points in our lives where we think everything is great and not in need of any further evaluation.

Everything needs evaluation, ongoing clarity,  and systematic acknowledgement that we ourselves are always half of everything. We aren’t the whole 100%, our virtues and beliefs may be right and working for us, but that doesn’t mean they are correct and to be followed by all.

It’s a simple concept, but it can often take a lifetime to understand. For me, it’s taking 27-years and counting.

Addressing Bad Attitudes In The Disability Workforce (From A Client’s Perspective)

With pay rates set to rise again for some in the disability workforce, attitudes toward the best ways of working need to rise as well. 

This isn’t going to be a blog that has all the answers, nor is it going to have excuses for what’s not working currently. Some of this will apply to support workers, other parts will be easy to talk about in theory. But if nothing else, this blog aims to talk about attitude and where it sits in a disability sector/community that is changing rapidly.

As a client receiving disability support services, some of these thoughts represent over 27-years worth of experience.

The outlook on whether or not attitude is improving through the workforce will vary depending on who you talk to and what their respective interests are. If you talk to many disabled people you’ll find that despite the pay equity settlement, something support workers deserve to a large extent, the quality of the workforce and services on offer aren’t exactly rising at the same rate.

If you talk to some support workers they will feel like their concerns aren’t being heard and that the needs of the clients they serve are given more attention. If you are a paid professional, a very big part of me would say that this is exactly as it should be. You chose to work in this sector, the people needing support didn’t choose to live in it. Some will attempt to place blame back on their own providers, or even more interestingly, some will say that the workforce is becoming too unfair because disabled people and families now hold more of the cards than ever before.

What I’ve noticed is that it’s often the smaller organizations that seem to grasp how to implement the principles behind choice and control in their service delivery and staff conversation. Despite that, these smaller organizations are often even more compromised than their larger, national-based organizations are from a financial and expertise perspective.

Those last two words being key… expertise and perspective. Not financial.

Addressing Bad Attitudes In The Disability Workforce (From A Client’s Perspective)

The success or failure of what new systems are trying to accomplish sit on the workforce to a large degree. Everyone needs to work together to make it better, but the onus needs to be on those getting paid an ever-increasing pay packet to sharpen up on what their actual role is.

I’ve long been a believer that a certain level of a certificate (and subsequent pay standard) that a support worker sits on doesn’t automatically confirm whether they are indeed a good worker or not. Being a good support worker and the requirements of achieving such are both subjective topics, but many would tell you that the best signals of it can be found in attitude.

The discussion of attitude goes far beyond just support workers, it’s sector-wide. The very fundamentals of what system transformation is built on is a shift in attitude. That takes a willingness to learn, to change, and to work together. These aren’t just three big buzz words that look good in policy or service design, they are requirements that if not met will mean that new systems such as Enabling Good Lives will ultimately fail.

The devil is in the detail (and old phrase I know) and many of the shifts in attitude we are talking about take place in the nitty-gritty, day-to-day, moment-to-moment interactions between the system and disabled people/families.

The financials mean little to disabled people and families, apart from them receiving funding packages that met their needs.

It is my view that disabled people and families should be aware of what their packages are, how much money is available, and absolutely, all the ways it can be spent whether directly or through a host.

The day-to-day stuff is what matters to disabled people and families, including the nature in which the support is carried out in those moments. It shouldn’t be their concern, worry, or even responsibility to be direct managers of that. If disabled people and families are capable and willing to take on this direct employer, manager, self-funder role then go ahead and do it but at the same time realize how vulnerable a position you could be putting yourself in.

For as much as the disability sector has talked about supporting disabled people through the process of being their own self-managers, it’s also done very little to address what happens when that goes wrong. I know that from first-hand experiences, bad first-hand experiences.

There needs to be some serious attention placed on attitude improvement through action. Leaving people in vulnerable managerial positions is an attitude of neglect. For support workers who have to work together to serve the needs of clients, not being a team player and having a ‘bare minimum’ attitude will lead to you having more and more performance review meetings, and ultimately your employment could be at stake, whether you resign or are terminated.

Think of it from a business perspective. If partners of the business weren’t pulling their weight or delivering on targets set, that partnership wouldn’t last long. The exact same principle should be applied in the disability sector because it is a business for many involved and the very best outcomes should be expected.

If these outcomes are not met, questions need to be asked as to why. A better attitude in the workforce is required, and less responsibility being put on disabled people to help deliver that.

I’m Disabled, My Possibilities Are Limitless

Just because a term may have an official definition, that doesn’t make it true or worthy to be fighting against.

As a disabled person myself and a passionate activist for the rights of disabled people, I’ve never identified with how the use of words like ableism is currently being applied. I agree that discrimination exists and that disabled people face a variety of social, economic, and educational barriers that continue to prevent us from having the equal platform that we’ve been fighting for.

However, that isn’t a concession that ableism is ok and should continue to be used in the manner that it is.

After 27-years of facing inequality in all the areas mentioned above, I am not convinced that the so-called ‘ableism’ as its labeled is a simple matter of blatant discrimination. Furthermore, I am growing uncomfortable with how we label non-disabled people when we ourselves are the first to be outraged when labels are placed on us.

Are we suddenly stooping to the same level as those who’ve labeled as? And if so, why?

Maybe I am playing devil’s advocate here, but further to my earlier point, I also remain unconvinced that the disability community should be using words like ableism, ableists, abled allies, and more in the manner that it is. Especially recently, I’ve noticed a big increase in the use of these words, especially how we are accusing non-disabled people of being ableists and placing the blame squarely on them for all the frustration we feel due to the treatment we often receive.

Take the recent #ThingsDisabledPeopleKnow social media movement for example. The number of times you would have read the word ableism in some 20,000+ tweets would stagger you, and I immediately argued that simply because a word has an official definition (aka ableism), doesn’t make it true.

It’s all about interpretation, and speaking of interpretation, some of the things I’ve read in recent weeks suggest to me that many disability rights activists are prepared to now start a war against non-disabled people and the institutions they serve.

Furthermore, our community can often get extremely angry toward the so-called “abled allies”, take the recent Crutches and Spice blog as a good example where Imani Barbarin wrote that “Bryan Cranston is everything I will not be accepting from abled allies in 2019”.

The question then becomes – is all this a result of years and years of frustration coming to a head and finally making some legitimate headway?

The numbers of disabled people worldwide facing discrimination cannot be ignored and this is not some made up myth. Speaking of myths, disabled people are educated and can bring a lot of benefit to the workforce. One of the biggest reasons this myth exists amongst some non-disabled is down to how invisible disabled children are in the schooling system. If New Zealand is anything to go by, many disabled learners are often grouped together in special education units separated from the mainstream classroom.

I’ve personally argued for years that one of the best things we can do to better serve lifetime inclusion of disabled people is by starting from the earliest moments of entering the education system and having disabled kids visible to their non-disabled peers in a way that doesn’t suggest some kind of poignant difference.

Disabled people are not special just because of their disability, and we are (in my mind at least) entitled to nothing more than an equal footing in all the areas I mentioned at the start of this blog.

But it’s how we go about achieving this equality, and we should always ask ourselves how productive the things we say within our own community are when it comes to reaching the eyes and ears of those outside of it. Personally, if I wasn’t disabled and I heard someone labeling me an ableist because of my ignorance, I’d do little to change my behavior because I’ve just been labeled something that I’d likely not understand in the first place.

Ableism Doesn’t Restrict My Life

Call me an apologist for the non-disabled, throw all the stats, state all the personal examples of your own personal experiences to back up why using these labels in discourse is appropriate because I remain unchanged on one simple argument.

That argument, dear reader, is a two-fold one. First, as disabled people advocating for the equality we crave, we must accept that a big key to success sits outside of our own community and will likely not be controlled by us, we don’t hold the cards and we shouldn’t own all the conversation, either. The cards sit in the hands of a productive, co-design approach to all levels of policy, leadership, and data that impacts and influences social, economic, educational, and really, all drivers of modern society.

Second, and I say this as a disabled person… one of the biggest keys to advocating and thinking critically about the best ways to achieving equality for disabled people is having the ability to place ourselves in the mindset of non-disabled people and think about things from their point of view.

Yes, we are frustrated and yes, we have every right to be. It’s beyond comprehension that in 2019 we are faced with some of the barriers that we are.

But let’s be productive about this. Creating a community, sharing information, and linking with people of similar mindsets is great. But what about where all of that goes? Where does the current level of discourse go in the long run?

Keep in mind, this is just one man from New Zealand’s point of view, but I choose to challenge myself first. As a disabled person, my possibilities are limitless. Literally none, and I mean none, of the success, failure, and missed opportunity I’ve experienced in 27-years has been down to my disability or the attitudes of those in front of me who don’t experience what I do each day.

I’ve just made a conscious effort to keep it real, trust in my own abilities and acknowledge my weaknesses, and not be forced into thinking a certain way about disability. As I said, my possibilities are limitless. It’s all on me, I am owed nothing and I work to make my platforms in life as equal as possible. That’s literally all I can do.

So, what do I think about terms like ableism? Simple. You get more bees with honey than you do with vinegar.

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/