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.

Disability Advocates Need Not Rely On New Government

As many in the disability community celebrate the biggest change in politics since 2008, disability advocates and service providers alike cannot afford to put all their eggs into one basket… again.

Waiting and relying on the new Labour/NZ First/Greens government to make drastic changes to the disability space (particularly how it’s funded) is the worst thing Service Providers and advocates could do at this point.

When you break it down a little further; there are two sides to this conversation, and there is a certain amount of merit to having every faith in the new government. But, that comes with a potential cost.

Disability needs to be on the political agenda in a much bigger way than ever before. You could argue that with the System Transformation project, the Government is investing more attention and planning into the disability space than a lot would give it credit for. But outside of that System Transformation; not a lot has been happening on the political front as it pertains to disability.

Implementing System Transformation isn’t going to change the status quo either… at least not for those ineligible for DSS supports. That is the cost… putting all the eggs into one basket and having trust that it will benefit the majority of New Zealand’s disabled population (24% and growing). Add into that the growing rates of Maori with disabilities – constantly ranking higher than any other ethnicity in New Zealand.

This cannot be an area of solving that encompasses just one big egg basket. It’s going to take multiple egg baskets.

Investing In Advocacy That Actually Has Meaning & Context

I really feel that there is incredible potential in the advocacy space, but it needs to be done by people with disabilities, and not the establishment that represents them. We’ve been doing that for a long time now, yes it’s been people with disabilities speaking, but usually it’s under the umbrella of an organisation or a certain cause for a pre set agenda.

The narrative on what disability actually means needs to shift to one that tells the actual stories of peoples’ individual situations and stories. Those situations and stories often encompass issues caused by the real barriers in a society that largely still perceives disability to be abnormal, off-putting, and a situation that comes with a cost.

Don’t believe me on the “coming with a cost” statement? Just look at the education and employment space. That’s the ideology that exists.

Disability Advocates Need To Look At Themselves Before New Government

Phrases like “nothing about us without us” and “greater choice and control” is another area where more focus needs to be directed.

Both are very true, and both form a strong basis for what future models (some even currently) are and should be. But what exactly is the power behind these conversations and subsequent decisions? Again it varies, but when we are talking about funding models and support structures, the disabled person must be the one calling the shots on that front. If not, “greater choice and control” is under threat to become just another buzzword.

It sounds a little outlandish – but is the budget really a concern to people requiring support? Perhaps that is a question to be answered in another blog.

Mike Kings’ fight against Government is music to the ears

Mike Kings’ stance against the Government’s suicide prevention plan is exactly what New Zealand needed in a time where politicians sit on their hands.

King, who says suicide prevention is a responsibility for everyone, has attacked the Government over what he calls a ‘deeply flawed’ plan to cut down on suicide rates in New Zealand.

The comedian and mental health advocate is on of New Zealand’s well-known faces, and his stance has gathered a lot of attention in recent days.

As a direct result of a recently released draft strategy, King resigned from his role on the Governments board working on suicide prevention after two years in the role.

King has revealed, publicly, a fact that many people already know but don’t speak up about.

In New Zealand, young people are not being treated appropriately for suicidal thoughts, and in some cases, are sent back into the community within as little as two hours of arriving in medical facilities.

“People have to actually attempt suicide before they will get some action”, King said.

It is another reminder of how poor the health system is in New Zealand. Cost saving appears to be the priority, not quality of live for New Zealanders. King’s stance points to a bigger picture of the overall problem – and more prominent people need to start speaking out.

Currently, New Zealand has the highest rate of teen suicide in the modern developed world. That is a major black mark against this country’s health system – and one that needs to change fast.

Why I Can’t Keep Quiet: Part 2

When the Government made the decision to focus more on early intervention for children with disabilities, it was bold and uncompromising.

This blog today, the second in the ‘Why I Can’t Keep Quiet’ series, will take a look at my thoughts on the disability sector and where we are at the moment.

A lot of people would look at me and think that I am an upstart little shit with no sense of control or thought into the claims I make. Continue reading Why I Can’t Keep Quiet: Part 2

ORS Funding to be reviewed by Government

Students over the age of 18 who want to enter tertiary education may be left with less support than what is currently available.

The Government will review the Ongoing Resourcing Scheme in the near future as radical changes to Special Education are set to continue.

The Ongoing Resourcing Scheme, or as most people commonly know it, ORS Funding, will likely be significantly reduced for students with disabilities over the age of 18. Continue reading ORS Funding to be reviewed by Government

NZ Government should give more time to pilots like EGL

You don’t have to look very far to see examples of how the disability sector is changing to a more ‘person driven’ model.

Expectations are getting higher, and it exceeds beyond what has typically been ‘the norm’ until now. It is no longer just about ensuring that people with disabilities get their personal cares and the home cleaning done, but it is about the standard and delivery in which this is done.

Furthermore, it is about providing disabled people with the opportunity to make all decisions that impact on their lives. Continue reading NZ Government should give more time to pilots like EGL