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 

Disability Pride Week Presents Double Edged Sword Dilemma

Disability Pride week has a strong and clear message, but it also goes directly against the Social Model of Disability and does little to remove the barriers placed in front of 1.1 million people living with disabilities in New Zealand. 

The social model of disability states that disability is caused by the way society is organised, rather than by the actual impairment itself. The model aims to find ways of removing those barriers, and the question that needs to be asked this week is: does Disability Pride really do the same?

The answer is no.

According to several press releases; Disability Pride Week is aimed at bringing disabled people together to celebrate their common connection through sharing stories and showing off creativity. Rachel Noble, one of the minds behind the new movement, said that the vision is for New Zealand to be a place where disabled people feel proud of themselves and their country. Nick Ruane, fellow creator of the event, believes that Disability Pride Week is a way of disabled people claiming their place in society and the wider human rights movement.

It’s argued that pride is an integral aspect to any movement gaining momentum to create future change.

Does Disability Pride Week Stand Up?

It all sounds very good on paper, but in a community where so much of the belief has previously supported the values of the social model, Disability Pride week goes against the grain.

If the social model is true, Disability Pride Week actually supports a society that continues to place barriers in the paths of people within the community. Barriers like fair access to education, employer attitudes towards hiring people with disabilities, and support systems that are rigid and lack flexibility… just to name a few.

Disability Pride Week gives the community little incentive to do anything about fixing those barriers. No matter how strong, inclusive, and clear the messaging behind it is. Conversation is one thing, but action coming from that is another. Conversation, and parading around, will not create the fully inclusive New Zealand for people with disabilities.

To achieve a fully inclusive society for people with disabilities, it’s going to take work from both the disability community and those who don’t identify or fall under the disability umbrella. Taking pride and showing solidarity is to be admired, but the disability community has already been stifled with endless story-telling, discussion around how diverse the community is, and yet more dialogue about the importance of standing up and being counted.

Such tactics didn’t sway votes, or meaningful political attention toward disability issues in 2016, and it will do little here either. Like the Gay Pride and LGBTQ movements before it, Disability Pride Week encourages people with disabilities to go out and actively attempt to convince the wider community to accept them.

And yet, if you look at history, such tactics have done their part to raise awareness. But how much of that awareness has resulted in action? The fight is still, and perhaps will forever be, ongoing.

 

People With Disabilities Don’t Appreciate Being Categorised

People with disabilities are people first, not access citizens or any other label that objectifies, categorises, and ultimately stigmatises them based on disability. 

In an otherwise successful Disability Matters conference in Dunedin this week, the “new terminology” to describe disabled people has caused a stir.

Reportedly, the ideology behind the new term is about “all of us”, meaning that everyone has the right to easy access round their environment. The problem with new terms like “Access Citizens” is that so many people in the disability community just don’t like it. They don’t want to be told how to best describe themselves, and they certainly don’t appreciate the lack of consultation around it, which appears to be the case in this latest example. Some say that terms like this will continue to marginalise people with disabilities.

Several sources say that Be. Accessible are the group who developed the new term, but that hasn’t been confirmed as yet.

People With Disabilities Don’t Appreciate Being Categorised

Man, woman, girl, boy, or transexual. People are diverse, and they all have different needs and wants in life. Yes, everyone does have a right to easy access to their environment, but they don’t need to be labelled in the process. Equal access to the physical environment should be a requirement by law, and in 2017, the fact that this still isn’t the reality is discriminatory in itself.

No amount of terminology changes will fix the reality. Action will fix it, and allowing an ever-diversifying community (the disability community) to lead that conversation is the real action that’s needed here.

 

REPORT: Claims Emerge Of Bullying Within Be. Leadership

New claims reveal a a tale of lies and bullying culture amongst Be. Leadership directors and participants. 

Speaking to The Real Michael Pulman last week, a source says that a member was forced to pull out of participating in the programme due to directors saying they wouldn’t accommodate a particular support worker.  

The source, who asked not to be named for their own protection, claims that Be. Leadership made assurances that all support needs would be catered for throughout the year and covered in the cost. However, when one member showed up on day one of the programme, Be. Leadership said that the member would have to pay the accommodation and travel costs out of their own pocket. 

As a result, the member was forced to withdraw from the programme. Initially, it’s claimed that Be. Leadership directors attempted to guilt the member into reconsidering their decision despite the member saying they couldn’t meet the costs. 

When they were told the member was pulling out, they kept ringing and tried pressuring them into coming back. They said it wasn’t fair on everyone else there and that other people that applied previously hadn’t got in because of this member.

Only after several other people got involved and mediated between the two parties, the matter was dropped.

According to various sources, this particular example may not be an isolated incident either. It’s alleged that one participant who graduated from the the Be. Leadership 2017 programme is now in serious financial debt as a result of the organisation refusing to fund necessary supports and accommodation for them also.

Our source pointed towards strict funding guidelines and an ever increasing difficulty to cover costs as a key motivator for some of the pressures put on participants.

Every time Be. Leadership get funding for a programme, there are certain guidelines that must be followed. That’s why they put so much pressure on people to stay even if they are unhappy.

Be. Leadership, a “one-of-a-kind” leadership programme for people with disabilities, costs $17,000 per participant. Throughout the year, participants are encouraged to fundraise towards the cost. 

Another source close to The Real Michael Pulman claims that some participants were being encouraged to consume large quantities of alcohol during leadership retreats. That same source also said directors pressured participants into giving Be. Leadership positive feedback in a bid to stay a part of the coveted “Be. Leadership Alumin” post graduation. 

More to come.

 

CCS Disability Action coordinators guilty of poor practice

With coordination charged at $46.00 per hour – CCS Disability Action may need to crack down on poor practice by some within the organisation.

A lack of communication among coordinators, poor management, and a lack of responsibility has led to some clients being left without their entitled support hours.

The Real Michael Pulman understands that a woman in Hamilton was previously left with less than half of her allocated support each day. The woman was entitled, by way of funding based on her needs assessment, to over 50% more of the support she was getting on a weekly basis.

Reasons for the lack of full support hours are believed to be on availability of support workers.

The situation has since been rectified, but problems with the coordination department continue to be at an all-time high.

According to CCS Disability Action’s Memorandum of Understanding with its clients, coordinators are to take responsibility for the organisations policies and protocols that ensure a quality delivery of service to their clients.

These protocols are across all teams of support within the organisation; including Youth & Adult and Vocation services.

Sources have informed The Real Michael Pulman that some coordinators have been found guilty of ‘passing the buck’ following mishaps that have resulted in people being left either without support at all, or with an agency carer as a last-minute replacement.

More to come.

System Transformation workshops off to underwhelming start

Two workshops down and not a lot to show for the co-design group behind transforming the disability support system in New Zealand.

Throughout April, the first of several workshops were held in Wellington that saw a small group of disabled people, advocates, and service providers come together to work with Government.

The purpose is to design a new system for supporting disabled people; but about all that’s been achieved so far is discussion on Enabling Good Lives principles and clarifying the meaning of Mainstream First.

Workshops continue in Wellington this week, but the group have already convinced project manager Sacha O’Dea to schedule additional meetings in a bid to get the process complete in time for cabinet’s reading in June. More work will need to be done in between meetings as well.

There was a lack of clarity of the actual scope behind transforming the system, and that was a major cause of anxiety in the first meeting. Finer details were cleared up and the official line from O’Dea to the group is that the scope of transformation is for all specialist disability support services in New Zealand. That adds up to around 33,000 people in total – with no word on the restrictions regarding eligibility criteria.

The second workshop saw clarification over the term ‘Mainstream First’ – a big buzzword behind new approaches to services that enable more choice and control. Here is the decided meaning:

“Everybody experiences full participation and inclusion within their community (people, places, assets, infrastructure and supports) as of right and can choose funded supports to enhance and facilitate this.”

The group is keen on getting into the actual design process – something that hasn’t really happened throughout the first month of the project.

Hard Work & Real Action Needs To Begin Now

There is no doubt that the co-design group faces an immense task over the next eight weeks.

It goes without saying that whatever the future looks like for services, and more importantly the process, a key ingredient needs to be simplicity. One assessment, one host, and a greater level of flexibility to go along with the person as their life journey continues. Don’t do things to, for, or on behalf of the person with a disability, do it with them.

This isn’t a case of creating a “brave new world”, it’s about creating a fair system that does include a much greater level of financial investment. The money side matters just as much as the promise of a better system, one cannot be a given without the other.

While some great minds are present on this group, just how much can be achieved remains the huge question.

In an election year, time is of the absolute essence, and it’s debatable that Minister Nicky Wagner will leave anything to chance when it comes to this so called “system transformation”. Re inventing the wheel isn’t going to happen by June.

There is a risk that this co design group could be just another example of great talk, with positive enthusiasm and quiet cynicism, followed by mediocre action.

 

Poor Coordination by Support Providers affects real lives

Poor communication among service providers has always been one of the worst aspects of the business. Allow me to share a personal tale.

I need to preface this blog with an acknowledgement that this is about an issue that I am personally involved in. I also want to say that I realise mistakes happen, and those are often due to miscommunication. No coordinator is perfect, but I really feel like I need to come to the defense of support workers in this instance.

On two separate occasions this week; I was left without a support worker. The first time, a support worker who was already rostered to be working with me had been double booked. The curious thing about this is that another coordinator, not my own, had booked the worker to be with another client when they were already rostored to be with me. That other coordinator didn’t bother checking with either the support worker or their fellow coordinators about if there would be any overlap. A breakdown in communication. The coordinators then blamed the support worker for the mix up – but what were they supposed to do? One person telling them one thing and another something totally different.

The result? I had no support for the entire day. It was just lucky that my partner was staying over the night before – so she kindly offered to help me with my cares.

The second occasion was even worse. A support worker had put in, and been approved, annual leave for the day. Not only was no other arrangement made, but the coordinator claimed to not be aware of the support worker being on leave. By this time, it was late in the afternoon and typically, all other options failed. A breakdown in communication.

The result? I had no support for almost two hours until something was arranged – and that something was another support worker coming in out of the goodness of their heart when they were supposed to be at home with their family.

Naturally I was furious, and I immediately complained. But it got me thinking – and I realised that this sort of thing is happening to so many disabled people who need this vital support. Calling in an agency staff (a contractor from another service) seems to be the “go to” solution when these miscommunications happen. Ok well that’s fine, but did you realise that an agency staff actually costs a considerable amount more? You’re also charged for the coordination time for all this too – even when the situation that led to you having no support is because of the coordinators screw up.

Always remember – the disability sector and especially these support organisations are a business. It’s about money just as much, if not more, than the people who need help. If you disagree then you’re not only kidding yourself, but you’re an idiot too.

Today we received an apology for what happened – and while I accept it – we need to acknowledge the fact that something really does need to change. Forget about my personal situation and look at the bigger picture for a moment. How many people do you think rely on support and how many do you think suffer the same inconsistent assurance? Make your number and then double it.

Let’s also not forget about the potential safety issue that poor coordination can have. Do these people realise how vulnerable some of their clients are? The paperwork suggests so but all that can often get bogged down amongst all the other admin duties a coordinator is lumped with – the forms and policies etc.

So how do we fix this? Better communication would be good for a start. You’ve got a contract too – the people have these disabilities for life. Does it mess up yours as much as it does theirs? With pay equity being given the green light by the Government this week; providers are about to come under even more financial pressure. At the very least, do your job right at its most basic and fundamental level.

Minister for Disability Issues lashes out in Parliament

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Minister Wagner lashed out in Parliament this afternoon. Photo: TheWorkingBlog

In a remarkable afternoon in Parliament; the Minister for Disability Issues took aim at IDEA Services and labelled the provider irresponsible.

Opposition Labour MP Poto Williams has accused Nicky Wagner of reacting in an appalling manner when asked about cuts to Autism Spectrum Disorder (ASD) support announced by IDEA Services on Tuesday.

In a rant of sorts, Wagner accused IDEA Services of doing a U-turn on discussions about re-signing the contract which would have seen the ASD support continue. Wagner also claims that IDEA refused to enter into transitional services before a new provider was found.

“After previously indicating they would renew contracts, they gave no notice their clients. They also refused to agree to a temporary three month contract”, Wagner said. “I say that IDEA Services is being totally irresponsible. We all know change is difficult, especially for this cohort of clients where routine and security is so important”, Wagner added.

In the aftermath of Wagner’s comments, the Ministry of Health issued a statement. Toni Atkinson, the senior media advisor for the Ministry, reaffirmed the Government’s stance that increased levels of funding has been injected into IDEA Services.

“IDEA have been funded $2.3million per annum to deliver these ASD services. They, like other providers, need to configure their service within the available funding”, Atkinson said.

Despite a long relationship between IDEA Services and the Ministry; it appears that the relationship could now be over.

“We acknowledge IDEA’s long standing commitment to the provision of Autism Spectrum Disorder (ASD) services through New Zealand. We are disappointed that the relationship with families and the Ministry is to end in this way”, Atkinson said.

Reaction on social media has been of shock and disappointment, particularly at Wagner for her comments. One woman said the Minister was in “la la land” if she couldn’t work out how underfunded the disability sector is.

The Ministry say that other providers have already showed willingness to pick up the ASD contracts. No firm date has been given for new services and an announcement won’t be made until a new provider is confirmed.

Atkinson says that the wait will continue for the high amount of people on waiting lists.

“People on wait lists will stay on the waiting list until new services are in place. The Ministry will ask IDEA to provide a copy of the current waiting list so that these people can be prioritised once alternative services are in place.”

The Ministry estimates that currently 446 active clients are involved in services and 728 families across New Zealand are on waiting lists.

Overhaul of Disability Support Services envisioned by Government

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Disability Support Services may get a major overhaul in New Zealand. Photo Credit: NMDHB NZ

The Enabling Good Lives demonstration will continue in the Waikato as the Minister for Disability Issues says systematic change needs to occur.

A co-design group will be formed to oversee what will become a total, systematic change to how people with disabilities are supported in New Zealand. Under the new system, those requiring support will receive a personal budget and the needs assessments will be much more strength based.

A major culture change within the disability support service sector, according to Minister Wagner. A significant revamp to the NASC culture, system, and process is needed. The changes will include a rebranding for the NASC organisations, such as Disability Support Link.

“To date, the disability support system has been more about the system than disabled people”, Wagner said.

The change will be underpinned by the principles of Enabling Good Lives, a direction that strongly supports greater choice and flexibility for people with disabilities. The Government will also use evidence of “what works” in future decisions.

More to come.

The Disability Confident employment strategy

Less than 45% of New Zealand’s disabled population is employed, and a new campaign from the Minister for Disability Issues is again a little hit and miss.

The Disability Confident campaign aims to improve employment outcomes for people with disabilities, but in order to be successful, employers must be willing to forgo some of their pre-conceived ideas about what’s “best for business”.

Nicky Wagner, the Minister for Disability Issues, says that people with disabilities represent a vast pool of talent that employers can tap into to enhance their workplace. Wagner also touched on a good point in her comments about the campaign. She said that it also gives disabled employees more confidence and economic independence.

The campaign aims to support employers to hire, and retain, disabled employees.

On the MSD website, there is more information about the Disability Confident campaign. A guide can also be found, featuring ‘how-to’s’ for employing disabled staff and a section on what hiring people with disabilities can do for a business. But, like a lot of other attempts to improve opportunities for disabled people in the workforce, this campaign relies on employers being willing to participate.

The fear that I have is that most employers won’t. Attempting to engage the mainstream workforce and the disability community has been done before. To moderate forms of success and failure.

Originally, one of the big principles of Enabling Good Lives focused on creating successful employment outcomes for people with disabilities. However, in order for participants to be eligible for that help, they first needed to be on a living support of some kind.