Blackballed (The Story of Michael Pulman): Part #1

Are you sure you want to know what it feels like to be blackballed?

This story, my story, will deal with themes that you may have heard a lot about, and most probably, you can identify with some of the thoughts I will express. My story is not special and it’s not meant to inspire you. What I hope my story will provide is a pillar for change, because our community needs to change, or many people are going to go through what I went through, and it, in the end, it will kill them.

We talk so much, but we only do a small portion of that talk, and by no means is it our fault. The fault lies in many different compartmentalized ideals, those ideals exist at every level of community, and we all know exactly how to fix them. My story is not about the faults, nor is it a self-help guide for the next generation of voices for the disability community. This story, it’s about what happened to me, and the fault lies squarely on my shoulders from start to finish.

That fault is how much I cared, plus how much I wanted to do two things: make a difference and be popular at the same time.

Ideal One: Ignorance Isn’t Bliss, But An Opportunity

When you are in the process of discovering yourself, you often trick yourself into thinking that you’ve got it all together and figured out. The truth is, you haven’t, and you’re just as ignorant as you’ve ever been.

Sitting in media studies, fresh off getting some exciting opportunities that my peers hadn’t had the initiative to go and get for themselves, I think I’ve got the path carved ahead of me. But I haven’t. In the middle of a media conference, talking to Sonny Bill Williams about his upcoming boxing fight, I find myself completely out of my depth and I fake it through the entire process. Here stands a modern day superstar of sport, a man that I’ve watched on the TV for years, a guy that I’ve both idolized and critiqued, and he is standing directly in front of me taking my question. It’s at this moment where I think that I know what I want to do for the rest of my life.

During that press conference, I get a text message from my Dad and it reads “how’s it going superstar reporter?”.

I cruised through that first year of media studies, achieving straight A’s for all of my classes. I wasn’t proud, I was relieved, and every so gradually, my confidence and self-belief were growing. Another thing I noticed was that if you cannot control that confidence, you will quickly feel as if you are a bigger deal than you actually are as if you have a gift and were chosen for these opportunities. It gives you a sense of fulfillment and purpose, but at that time I was completely ignorant of the fact that I was lucky or in a position of privilege.

And then it happened… I get a call from CCS Disability Action. They want to share my story in their upcoming newsletter.

Ideal Two: The Opportunity To Give Back Is Alluring

When I grew up, I experienced the actual realities of what it was like to live in the disability system. The system is actually full of amazing people, almost all of whom have a resolve to help in some way.

I’d like to think that one of the reasons I said yes to being the feature story for that CCS Disability Action newsletter, and the reason I said yes to all the opportunities that followed, is because I wanted to give back. You tend to develop a close connection with the organizations that you intertwine with throughout the years, or at least that was the case for me. I both loved and respected CCS Disability Action.

The story is printed in early 2015 and is called “How Many Chiefs Are Too Many”. To me, every time I read it, this is a story that paints the picture of a disabled person achieving great things in the community. It makes me sick on reflection, because the disability, or the challenges it presented to me, actually had nothing to do with anything other than marketing the story toward a certain audience, that audience being other disabled people and families.

Myself and Sonny Bill Williams (January 2015)
Myself and Liam Messam (January 2015)

From there, it doesn’t take long until the phone starts ringing and suddenly I find myself starting a completely new career. It’s at this moment that I start to discover that ignorance isn’t bliss it’s an opportunity.

Public speaking is the best thing I’ve ever had the privilege of doing, the impact it has had on me has shaped the ideas that I have towards advocating for disabled people and it motivates me to stay true to what I’ve come to learn since. Feedback is a gift, but before that feedback happens, we often think we know the formula to succeed. Second, we live in a world where a quick Google search can usually lead us to the answers we seek.

Having the belief that we know what we are talking about is total bullshit and it is a stepping stone to failure. Feedback is the formula we should be taking notice of, not the end result of where we are trying to get to.

Immediately I felt a sense of belonging, purpose, and an immense sense of importance about what I was doing. So, what does a public speaker actually do? Well, speak to people, something that I had never been terribly comfortable doing, but something I quickly began to enjoy, at least within the confines of doing it publicly.

Speaking on stage, particularly to more than a handful of people, gave me a sense of energy like nothing had before, but it dawned on me that this was an art that I had already been practicing through various forms of online media. But there is a big difference between sharing with people in an online context versus a more personal medium such as being directly in front of the audience you are communicating with. The latter has a much greater impact on people, and for whatever reason, they find themselves present at the event you are speaking at, these people will often look at you as if you are ‘worth the salt’ of whatever it is that you share with them.  

In reality, I had no right to suddenly be sitting in front of these people speaking as if my story was something worth listening to, or something to be inspired by. But yet, this was exactly how some organizations in the disability community were positioning me. Why?

Part #2 Coming Soon

Michael Pulman is a Hamilton-based writer, content creator, and public speaker. Michael has a strong interest in disability rights in New Zealand and in 2016 was a recipient of the Youth with Disability Award. You can get in touch with Michael via email at mikepulman91@gmail.com

Examining DPO Engagement With The Disability Community

Are Disabled People’s Organisations doing enough to ensure that the voices of New Zealand’s diverse community of disabled people are being heard and represented?

Disabled People’s Organisations, or DPO’s as they are more commonly known, are representative organisations governed by disabled people. In New Zealand, the size of the eight recognised DPO’s vary, but primarily their existence and mandates are based on representing the voice and views of their members. For example, the Disabled Person’s Assembly NZ aims to engage the disability community, with a view to listen and articulate the views of the community when working alongside decision makers.

But in reality, are disabled people satisfied that the organisations representing them are really listening to and hearing their views?

To try and understand this question a little more,  I created a poll on Facebook asking members of the disability community if they felt that DPO’s were generally doing enough to ensure that their voices were being heard and represented.

Out of a total of 34 votes submitted, 26 people said that they felt DPO’s could do more to hear and represent the views of the disability community. Just 2 votes came in saying yes, they were satisfied, whilst a further 6 people argued that with more funding, DPO’s could do more for disabled people.

Granted, we are dealing with a very small number of people who voted in that poll, and there is every chance that the numbers could swing dramatically in the opposite direction if more people had their say. Many DPO’s also generate regular surveys asking their members for feedback, and that feedback may tell more of a whole story. 

The Lack Of Funding For A DPO

The problem for many DPO’s is the amount of funding available not being sufficient enough to achieve all the goals it has. This is an argument put forward by many, and whilst it is familiar, it does have a lot of merit. Lobbying Government, be that local or national, for example, can be a time-intensive process and many organisations don’t have the time to put as much effort into pushing decision makers to further consider the rights of disabled people when it comes to new or existing policy. 

Holding local community forums and advertising them costs money as well, but some DPO’s are lucky enough to have forged connections with other community organisations in the disability space and have regular opportunities to hold their events using their buildings free of charge. Further costs for DPO’s can include travel and accommodation expenses for executive committee members when on official business on behalf of that DPO, and further expenses that cannot be forgotten is the costs to rent out spaces in buildings and pay all the staff working at national and regional levels.

Revenue streams for DPO’s vary, but memberships and donations often play a big part in balancing the books year to year.

Making Changes, Taking Responsibility For Delivering A Quality DPO

It is absolutely vital that the voices of disabled people and families, as well as the organisations working alongside them, are heard at the local level. But this, in all reality, is a two-way street. Many people with experience working within DPO’s argue that the community itself doesn’t engage enough with their elected leaders by attending local forums and national events, spreading the word about a DPO, or generally caring about what’s going on.

As a result of this, once regular forums see a lack of continued support from the community, slowly becoming stale, leading to disillusion on both sides.

That’s where two things become ultra important moving forward. Firstly, how local leaders engage with communities. These leaders need to ensure that regular meetings are held and that people know about them, and in some cases across New Zealand, this is not happening.

In the case of the DPA in the Waikato, Meetings are canceled suddenly, often without much notice or reasoning behind such other than the appropriate people needing to be somewhere else.

Advertising and information sharing on numerous modern platforms is essential also, and this is a national problem, not just for DPO’s, but for most organisations within the greater disability sector. Rather than relying on the traditional methods of monthly newsletters, word of mouth, and occasional Facebook page updates to engage with members, DPO’s need to find more ways to use new platforms such as Instagram for example, or embrace the live streaming video opportunities presented by YouTube, Facebook, and Twitch.  

Imagine a weekly live stream with an NZSL interpreter that is also presented as a podcast. This would allow a DPO to simultaneously share the latest news that would concern their membership, as well as have in depth and engaging conversations about issues that their members raise. Or, if you wanted to stick with holding local and national forums in the way that they are currently presented, at least record and advertise what happened at said forum in a way that is accessible to all disabled New Zealanders, and the wider public.

Secondly, there is a responsibility on the memberships of DPO’s as well. During conversations ahead of writing this blog, some did raise with me their frustration and disillusion with the lack of engagement by local communities when it comes to attendance at events that don’t include a Ministerial visit or big announcement of some kind.

Often, one person said, it was “the same old faces and the same old discussions at the same old events with tea and biscuits”.

Conclusion

The aim of this blog wasn’t to rubbish DPO’s, nor was it to make excuses for their occasional lack of transparency. The aim of this blog was to have a fair and frank discussion about a question that needs more attention placed on it.

We started out the blog by asking that question, are DPO’s doing enough to ensure that the voices of New Zealand’s diverse community of disabled people are being heard and represented?

Regardless of the answer to this question, the discussion should be about the roles, accountability, responsibilities, and most importantly, the outcomes that DPO’s are delivering for disabled New Zealanders at all levels. It doesn’t take a whole lot of funding to listen to people, nor does it take a whole lot of funding to discuss that invaluable feedback in the boardroom. 

Resources Used In This Blog:

Michael Pulman is a Hamilton-based writer, content creator, and public speaker. Michael has a strong interest in disability rights in New Zealand and in 2016 was a recipient of the Youth with Disability Award. You can get in touch with Michael via email at mikepulman91@gmail.com 

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. 

 

DSS Transformation: What About Disabled People In Residential Care?

OPINION: Those with high and complex needs requiring 24/7 care may face limited opportunities to move out of residential care when the new DSS begins in the MidCentral from October 1st.

All current DSS users in the MidCentral will be eligible to transition into the new system from October 1st, but comments made by DSS Transformation project lead Sacha O’Dea suggest that there is still a lot of uncertainty surrounding viable options for disabled people living in residential services wanting to live on their own.

Disabled people requiring intensive support are referred to as those with high and complex needs. Typically they require one to one support on a 24/7 basis and can have a variety of different physical and intellectual conditions. Support arrangements of this nature often occur in residential care group homes run by the MoH and predominantly feature three to five live in residents and support staff working shifts. 

This is the demographic of disabled people using DSS that are the most faceless and unheard sub-community within the greater disability rights discussion.

Currently, the personal support budgets of disabled people living in these homes are difficult to track and fully account for because they are thrown together with the budget of all other residents in the home in order to fund both the support and the running of the service.

During the latest Provider Q&A Session live stream last Thursday, a question about the options people living in residential care homes have in the MidCentral after October 1st was fired at O’Dea via the YouTube live chat. 

O’Dea was asked if the MoH had accounted for the personal support budgets of disabled people with high and complex needs that require 24/7 one to one support and what options would be available in the new DSS if a person wanted to move out of a residential care group home.

The response from O’Dea didn’t answer the question as much as raise some concerns about the scope of what might be possible for someone wanting to move out of residential care and live independently despite their high and complex support needs.

“There will always be limits on the funding that is available. We will be working with people to look at what is important to them and what are the ways they can achieve the kind of life they want within the funding that is available”, O’Dea said.

For a person wanting to look at living outside of a group home, O’Dea said that connectors in the MidCentral will work with people to look at different options before she suggested that different group arrangements could be explored.

It is about looking at what the different options are outside of the group setting or looking at other ways you could develop a different type of group setting potentially, but there will always be limits on the funding available”, O’Dea said.

Limited DSS Transformation Funding Will Hinder Disabled People In Residential Services

On the face of it, the answer O’Dea gave is perfectly valid and makes logical sense. 

On average, someone receiving disability support will be funded around $33,000 per year, but for those with high and complex needs, the budget could be well over $100,000 per year at its cheapest. Furthermore, decisions from Cabinet regarding the financial decisions for MidCentral rollout won’t be released for another couple of weeks.

But on the other side of the coin, if what O’Dea says is to be true, then the end scenario for a disabled person living in residential care could change very little to what is the current state of play now. What’s worse, many disabled people living in residential services already argue that they don’t currently get as much one to one support as their budget allocates due to staff shortages coupled with all the other needs of different people living in these homes.

In 2015, I personally visited a home that had seven disabled people living in a five-bedroom home, all of which had high and complex care needs, with just two staff on the floor. What I saw in this home was a situation of people just existing, what I heard was staff workers telling me that they simply couldn’t meet the support needs of each individual due to the demands of the collective, the lack of resources, and the seeming lack of care by the provider running the service. It all resulted in frustration on all sides, carers and residents, and a place of limbo that existed “until further notice”.

The notice, sadly, is still waiting to be given three years later. I often wonder, how does DSS Transformation help the likes of the people living in that house find a more independent setup in their community? The limits on the funding available, as O’Dea put it, indicate that options for people living in homes such as these will be limited.

What we are hearing more and more of during conversations about DSS Transformation is disabled people, finally, being able to have an opportunity to have a support system in place that is based on their choices and builds on their aspirations in life. That is the exact goal, and it may well be the reality of what happens in the MidCentral, but what exactly are the choices that those with high and complex needs will have once all the numbers are crunched and taken out of the direct/indirect support budgets set aside. (totaling $12.658 over two years).

Those in residential care homes should have the opportunity to live completely independently, separate of any group setting arrangement if that is what is most important to them in achieving the kind of life they want to live.

Documents Cited In This Blog:

Provider Q&A Session – https://www.youtube.com/watch?v=rQDdmnTYMh4

Ministers Media Release – http://www.enablinggoodlives.co.nz/system-transformation/transformation-papers/system-transformation-updates/april-2018-press-release/

Cabinet Paper Summary, April 2018 – http://www.enablinggoodlives.co.nz/system-transformation/transformation-papers/system-transformation-updates/summary-of-april-2018-cabinet-paper/ 


The Real Michael Pulman is a blogger, content creator, and public speaker with 26-years lived experience of disability based in Hamilton, New Zealand. Feedback to any of our blogs is welcome!

Disabled People Face Additional Complexities Finding Employment

The challenges facing disabled people finding employment are not just a simple matter of a discriminatory job market, it is also about the attitudes on both sides of the equation. The stats of unemployment don’t tell a lie, but neither do the realities facing disabled people, and the solution isn’t straightforward.

Almost every time I cite a statistic which shows that disabled people are clearly marginalised, particularly in the employment space, a familiar argument is made in response. The argument questions how many disabled people within these stats are able to and want to participate in employment, and/or education and training.

One person on Facebook recently raised the following with me:

With an already tight job market, they said, opportunities are limited depending on the disability and that physically disabled people couldn’t have done any of their previous physical labour jobs.

A fair and solid point raised, one I cannot question either.

This is where some of the arguments about blatant discrimination toward disabled people in the workforce begin to fall over. It isn’t as simple as what the stats suggest, the answer to solving the problem doesn’t just sit with changing the attitudes of employers and getting more disabled people into jobs. We need to look at the quality of jobs disabled people get and the market also needs to expand. But it doesn’t end there, either.

Are Disabled People Willing & Able To Fix The Employment Stats? 

Last week, TVNZ revealed that many disabled people who are employed earn less than $5 per hour due to exemptions handed out by the Ministry of Business and Innovation. In one case, a person with Down Syndrome was being paid 89c for their work in the community service sector. Is this what you would call equitable employment and do we want to see it continue?

The heart of the issue sits with attitude and ability. Many, if not most disabled people, want to be treated equally and have the same employment opportunities as their non-disabled peers. In fact, one in five disabled people say that they want to employment and work as many hours as possible. But on the other side of the coin, the argument that this ambition simply isn’t possible for some, due to a variety of factors including access, geographic location, and financial benefit.

The reality for a lot of disabled people may always be that they are unable to work enough hours to ensure that employment is a better financial prospect versus getting a disability benefit each week. The Labour Market Survey for June 2017 showed that weekly income for disabled people was just under 50% less compared to non-disabled, and that disabled people were likely to receive most if not all of that weekly income from Government transfers (74% versus 26% for non-disabled).

And thus, we are still searching for a solution that doesn’t only fix the stats to make New Zealand look like a more equitable country for disabled people, but we are also wrestling with an ideology of what is possible for this diverse community. What is possible, is indeed, perhaps the most diverse reality of them all. 

 

The Whole Of Life Approach To Supporting Disabled People

If System Transformation is to truly aid disabled people toward achieving a better life; the care aspect of support cannot be the overarching factor of the individual support package.

Make no mistake about it, degrees of need vary and different support packages will provide different things for different people in the new system. This variety will be one of the key learnings during what is promised to be a “try, learn, and adjust” approach, but before rollout, and well after, disabled people should be encouraged to approach their new support packages in different ways.

One of those ways could be to look at care requirements and how they are delivered as one of the most basic aspects of the entire setup. Yes, I just simplified it and used the word basic, in a system where even now, getting support provided is anything but.

If we are truly talking about using an approach to support that builds on people’s aspirations and gives them the autonomy to do what they want to do, then surely the delivery of care support (whatever that looks like) sits at the bottom and is one of the basic features toward achieving everything else.

For example, let’s look at someone with a physical disability who may come under “very high needs”. Let’s call this person Johnny.

If Johnny wants to study part-time three days a week in the morning, work two days a week in the afternoon, and hang out with friends and family on the weekends, then having his care needs (shower, dressing, home help etc) has to be in place in the first instance, right? None of the other things will work if the core care aspect is in place first, because Johnny needs to be able to get out of bed at 5.30am – 6.00am in order to make it to his class at 8.00am, Johnny needs transport to get to and from work, and he may choose to have a support person with him during all three of the things mentioned above, even when hanging out with friends and family because he may have additional needs when it comes to feeding etc. 

Point being, whatever Johnny needs in order to feel most at ease, he may choose to use a support worker rather than natural supports for some aspects of his needs, so then the support package needs to cater for that.

My idea of this approach is certainly nothing radically revolutionary compared to what has been discussed prior to now. The phrase “whole of life approach” has been used many times in the past when discussing new models of disability support. Enabling Good Lives used it, Individualised Funding providers used it, and most notably, Dr. Mark Bagshaw used it in his brilliant paper discussing support reforms back in 2008.

What’s more, this term has been one of the underlying values behind many of the roundtable discussions amongst sector leaders and advocates in the buildup to DSS System Transformation (due to launch in October) in the MidCentral.

DSS Transformation Focuses More On Disempowerment Of Disabled People

For too long, disabled people and whanau have been disempowered by two factors, community, and system.

Community (both the mainstream and the disability community) expectations, ideologies, and power struggles act as barriers just like the physical access issues in the built environment do. The system equally places barriers in front of disabled people because they can’t get adequate levels of support to be able to do the things they want to do, including in education during their most critical development years.

But there is no use in barking on about the mistakes of the past, or is there?

Dr. Bagshaw wrote that one of the biggest mistakes that have plagued disabled people has not been from a lack of investment or effort, but more so, how that investment and effort has been applied. What Dr. Bagshaw also eluded to in his paper was that a “Whole Of Life” business model that addresses infrastructure barriers, community expectations, and disempowerment was required.

Back in New Zealand and during a time when DSS is about to undergo its biggest transformation in history, the primary focus appears to have been addressing the disempowerment that disabled people face. Perhaps there is room for more work on infrastructure (including Universal Design) in the future, but given that the DSS project is under the scope of the Ministry of Health, the depth of reach is somewhat limited.

The Whole Of Life Approach To Supporting Disabled People

My idea of the “Whole Of Life” approach would see various recourses, including Maslow’s Hierarchy of Needs, fully realized under the new system of disability support. Like anyone else, disabled people’s morality and fulfillment matters, and that needs to be one of the core approaches to support, with less focus on the size of the financial investment.

System Transformation will rollout in the MidCentral region of New Zealand from October 1st.

Making New Zealand A Country With Less Formal Support For Disabled People

Imagine a world where disability supports weren’t categorised and under the control of providers.

There are already examples of disabled people managing their own supports, but even in the cases of Enabling Good Lives or Choice in Community Living (both of which use Individualised Funding), there is still a “middle man” of sorts, and still a lot of regulations on how personal budgets can be used.

Imagine getting away from all that. Imagine giving all the funding to the person from the very get go and allowing them to use it in any way they’d like. Or perhaps even, imagine giving them real freedom to use funding equally between necessary supports and option extras that still aid their good life.

For example, someone with a support budget of $60,000 per year would have that entire amount given up front, rather than monthly payments into a nominated bank account. The person could use this money on anything they’d like, including some of the following:

  • Buying transport to get into the community
  • Paying for tertiary education fees or existing student loans
  • Purchasing electronic equipment that can aid the needs of the individual, both personally and professionally (e.g. a film studio or furniture that is accessible) 
  • Paying for experimental drug treatments that aren’t yet funded by the health system

Of course, they could choose to spend their yearly budget strictly on support needs as well. But they’d have the choice, and the subsequent freedom.

What we are talking about here is a shift from formal ways of support, to throwing the rulebook out the window and actually putting the person fully into control of their own budget and how that is used on a yearly basis.

Even with the new initiatives; disabled people actually have no say on what the final figure of their yearly budget is. Supported self-assessments and NASC’s discuss needs, but in the end, the final decision regarding the figure is made by what the system concludes is an appropriate portion relative to the persons’ needs.

System Transformation will do its part in removing the regulation that’s placed on disabled people requiring support, and will in turn provide a greater level of flexibility that ever before. The rest, however, is going to be changes in attitude and releasing the balance of power. That includes budgets and how they are used.

What Happened To My Voice Matters?

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

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

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

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

What Happened To My Voice Matters?

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

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

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

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

 

2017 Year In Review: On The Outer

2017 was a year of immense personal challenge, growth, and a few big mistakes that I’ll reflect on for the rest of my life. 

Starting the year; I found myself unemployed and very much ‘on the outer’ of the disability sector. After over three-years of giving everything I had as a public speaker, communications guru, and general advocate for the rights of people with disabilities; things had suddenly gone really wrong very quickly.

It wasn’t a great space to be in. Being bitter about it was an understatement, I was bloody pissed off! It felt like I had been on this really good run, where a lot of people respected me, but the minute I went ‘against the grain’ and tried to have tough conversations, nobody in the sector wanted to listen.

Not only did it feel like nobody wanted to listen and engage in certain areas, I was made to feel like I was nothing more than a shit stirrer; someone who wanted attention by being deliberately hostile and controversial. That made me frustrated, and very resentful to more than a handful of people. I learnt quickly who my friends were, and who weren’t, but it got to a point where I lost confidence in myself as an advocate. I started believing that I actually was just a shit stirrer, and that led to a point of self-loathing that in turn led to some very stupid decisions in my personal life.

It’s ironic too, because the reason I had even been noticed in the first place was because I was a disabled person doing different roles in media and radio, whilst studying full-time. A few organisations heard of my story, and they wanted to connect with me. The big turnaround in fortune, from popular to hated very quickly, at the end of 2016 left a bitter taste in my mouth as I said.

For weeks, I reflected on the countless conversations I had with literally hundreds of people. Some of those people worked in organisations, and others were families and children that live life with a disability. Guess what I realised? There was, and still is now, a major disconnect between those two groups. In fact, I’d go as far as saying that this disconnect is as worse as its been for a very long time. Families are losing faith in the system, as well they should. There are only a handful of advocates who aren’t governed by an organisation, and I’m one of them.

2017 Year In Review: On The Outer

When I realised all that, I simply had no choice about where to go next. It all becomes quite simple really; realise that peoples’ opinion of me is out of my control. No matter what you do, people will take their own narrative from the things you say and write, especially online. Half of those people wouldn’t dare say some of the things that they were directly to my face either. Rather, they’d take comfort in saying it online by commenting on my posts and talking amongst their own group of friends, all of which shared similar opinions. It’s easy to do that when nobody challenges your narrative.

That’s part of the problem with the disability sector, too. Right from the top at Government, down to the community organisations, and even in some of the charities. There isn’t enough challenging of the cliche narrative that has existed for decades. There is no forward-thinking, and that leads to missed opportunity, because everything is so reactive. People in positions of leadership like to control and censor the messages about disability that go out to the wider community, but for so many of these people, they’ve been in the position for far too long that they’ve become short-sighted and too reliant on the same old systems.

You’ve got to own your opinions on things; don’t just say it because its popular at the time. The same goes for advocacy, and trust me, I’ve seen some so-called “advocates” in this sector shy away when the going gets tough and the knives are out. You can only be popular but so much. My gut instinct has always shaped my opinions and motivation to speak out of things, especially as a disability advocate. That’s why it makes it so easy for my critics, because they can easily question my actual knowledge on certain issues. But they also don’t see the countless hours of research, thoughts, and discussions I have about those same issues as well. That’s not convenient for their argument against me.

Where To From Here For Michael Pulman?

There are certain groups of people that will never work with me again, and it’s those same groups that I’ve got little respect for. In terms of “where to” for me in 2018… I am excited about what we at the Content Creators Network are doing. The TEAMPULMAN brand fits under that, and the beauty about it is that we are all just having conversations with one another. Unfiltered conversations.

Since launching late in 2017; it’s been a good run. Producing a live talk-show four nights a week is a fun challenge to have, and above all else, I love the interaction and the ideas that have spurned from that show.

The disability sector needs to become an industry. One that is progressive and proactive, utilising all modern forms of technology to work alongside the wider community. More detailed analysis about the hearts and minds of people needs to be had, and a National Register of disabled people actively seeking paid work needs to be undertaken. We need to be brave enough to broach subjects that go beyond just care, access, employment, and education. Those are biggies, I know, but these aspects don’t actually make up the structure of a person. Using the lack of advances in these areas and claiming that disabled people are at a disadvantage as an excuse is counter-productive and convenient.

There is little to celebrate about the state of our sector at all… really. A lot of it is nonsense actually.

I want to see a change in the narrative. I want to see people with disabilities in control of their lives in the present and the future. It’s them that should be making the policy decisions, them who should be leading organisations representing disability issues, and them who ultimately have nothing to lose and everything to gain by a big change in structure.