The investment behind impending Disability Support overhaul

With just $1.8million set aside for the major overhaul to disability support, the Government could well be making similar mistakes that it has in the past,

Some people say that the intent behind the Government’s proposal for change is not to the real benefit of disabled people in New Zealand.

Frankly, it’s hard to argue with that. The way the Government choose to take the transformation of disability support will be interesting, but  there is going to be losers, and a lot of them in New Zealand’s disabled community.

Calls for total system change have been rife since a report back in 2008. Then, concerns were that the support system restricted people’s choice and control over the supports and structure of their lives.

The proof of similar mistakes occurring again can be seen in a cabinet paper that proposed system transformation to disability support.

The entire project has a total financial investment of $1.8million. But claims that that sum is an investment by Government are also up for scrutiny. According to the cabinet paper, the $1.8million used to fund the system transformation project has been taken from a $3million contingency already established by the Government. That bucket of $3million was set aside for supporting further work and development of Enabling Good Lives.

A breakdown of the investment Government will put into DSS overhauls. Photo: Michael Pulman

This move can be seen in a couple of different ways, however. EGL (Enabling Good Lives) is a demonstration project that has been running in Christchurch and throughout the Waikato. If the system transformation works, using principles of EGL, the need for these two demonstrations no longer remains. If it doesn’t, chances are that the demonstrations will be forced to either stop, or continue minus the $1.8million batch of funding, therefore running at a loss of sorts.

Government have made it clear that any system transformation for disability support has to be cost-effective. In other words, make it work with $1.8million and offer little alternative. In the words of Sacha O’Dea from the Ministry of Health, the immediate future is that “everything stays exactly the same”.

The Minister for Disability Issues, Nicky Wagner, says that culture change within the disability support system will be significant. Within the last week, Idea Services (the operating arm of IHC) cut services that will affect 1200 users of disability support. When pressed on the matter, Wagner said that funding has increased across the disability sector.

“Idea Services will take a strength based approach and will focus on community residential and day services”, Wagner said. “In actual fact, funding for Idea Services has increased and this is absolutely in line with the increases that we have had right across the disability sector”, Wagner added.

The cabinet paper shows that an increase in funding has occurred, at a level of 4% over the course of the last ten years. That increase is spent across the Ministries of Health, Social Development, and Education; meaning a small impact at best.

So the question remains, can an overhaul that truly incorporates greater choice and control be a successful one for disabled people in New Zealand? It’s hard to imagine.

Disabled people meet with Ministry’s transformation leader

Disability support services are set to change. Photo: Stuff NZ

Two forums were held last week where Enabling Good Lives (EGL) participants in the Waikato could hear more about the future of the demonstration.

EGL was launched in the Waikato back in 2015 as part of a new model of disability supports that incorporate further choice and control for disabled people and their families.

The wider scope of the impending changes to disability support was also on the agenda at the forums, and Sacha O’Dea from the Ministry of Social Development was present to field questions.

“Everything stays exactly the same in the Waikato and their funding will continue until something else is rolled out”, O’Dea said.

O’Dea will manage a big chunk of the system transformation in her role as Programme Lead of System Transformation.

For the wider system transformation; a co-design group will be formed to come up with what the new system will provide to people with disabilities. Four disabled people and one representative of families will feature on that group amongst representatives from service providers, Government, and other key areas.

“It’s about understanding the population you’re working with and what the outcomes they want are. You’ve also got to look at what levels of funding they receive currently, and then you work out what additional improvements could be made with additional investment”, O’Dea said.

“We need to understand the level of funding currently available. It’s less about what the providers need and more about what individuals need to be able to purchase the right supports”, O’Dea added

Community inclusion and greater education about disability in schools was a key want for some of the participants at the forum. Just how this happens remains a big talking point among many in the disability sector, but O’Dea was adamant that getting disabled people doing more of the normal things in life was a good first step.

“People doing more things in everyday places will help to change attitudes in the community and the system transformation will allow them to have more choice over that”, O’Dea said.

The Waikato demonstration will continue until the wider transformation of the disability sector takes place. For now, decisions will be made by EGL’s Leadership Group in the Waikato will continue discussions about how to improve the services over the next two years.

Director of Enabling Good Lives talks future direction

The Enabling Good Lives’ Waikato team who will continue in their role as the demonstration continues. Photo: EGL Waikato

Enabling Good Lives will continue in the Waikato for two more years, but that doesn’t mean the status quo will remain.

Sixty new participants will be ushered into the Waikato demonstration each year; making for a total of 120 people who will get to experience the new model of support that provides greater flexibility and choice. Currently EGL (Enabling Good Lives) has 250 participants, most of whom are already fully funded.

Christine Potts, Director of the Waikato demonstration, says she is looking forward to the future challenges.

“There is a bit of growth for us here and the focus will be refining our systems, plus we will always be working with people to ensure they are getting the outcomes they want in their lives”, Potts said.

EGL’s Waikato Leadership Group will meet and discuss where the demonstration should go over the next two years.

Last week, the Minister for Disability Issues announced a ten-year plan to overhaul how disabled people access support systems in New Zealand. The first step is a new rollout in the Mid Central of the North Island, beginning in Palmerston North. The future direction will be built upon the principles of EGL, like greater choice and flexibility for people who require support to live an ordinary life because of their disability.

Christine Potts, says that the growth of EGL in the Waikato needs to align with the overall direction of the disability supports landscape moving forward.

“I’d like to see more people benefit, but here in the Waikato we can’t continue to be working in isolation. Government is working on transformation on a wider scale”, Potts said. “The key to it is seeing how much control disabled people have going forward, and if the direction can sit with them then I think anything is possible” Potts said.

Employment was a key focus area for the EGL demonstration prior to its launch in 2015. Two years later, employment for people with disabilities remains a huge challenge for the demonstration. Just six participants in the Waikato have gained work through their connections to EGL.

Potts recognises that the demonstration lacks in that area and confirmed that Work & Income would take the lead on that front in future. Such work includes Project 300, launched by the Minister last year.

“We won’t do any more targeted work in that area because Work and Income have several different initiatives surrounding that”, Potts said.

EGL participants in the Waikato will have the chance to have their questions asked at two forums in Hamilton next week.


Friend v Support Worker: An inhuman law

With the Residential Service Strategy under review, some of the ideologies about a Support Workers role in the life of people with disabilities need to be looked at.

You’d be surprised at the number of the elderly, and people with disabilities, who have next to no family or friends present in their lives. A lot of them live in care homes, retirement villages, and in group homes.

In comes a Support Worker, wearing that particular hat, and they are paid to assist someone, or a group of people, with their personal and community needs for a set number of hours per day. These workers, in a lot of cases, are paid the minimum wage.

As I’ve stated in previous blogs, the majority of people that I’ve spoken to who have Support Workers coming in and out of their homes see them as far more than just supportive aids. Also, a lot of experienced Support Workers have said to me that, over time, it is hard not to develop friendships with the people they support.

How, when you are spending so much time with a person each week, can you not begin to develop some kind of bond with them? There is, I believe, a double-standard and power game at play, and one that leaves the “client”, or person receiving support, always on the losing side.

The boundaries conversation is a flawed one, but, you also have to be professional, so where does the actual “line in the sand” exist?

Well for some, it just doesn’t.

Others will take the professional boundary “rule” so far that it becomes a situation where the person receiving the support, the person who’s funding pays for that workers job, can often feel like they mean nothing more than a paycheque to someone that is walking in and out of their homes.

A home is a persons place on sanctuary, comfort, and for many, a very private and intimate place.

Attitudes behind Residential Services and those who hire Support Workers as part of an agency or care provider are often struck with a very tight budget. Some people argue that if the pay was better, there would be more intention on the Support Worker’s part to really care about their job.

I am not saying that every Support Worker doesn’t “really care” about their job, and I am certainly not saying that they don’t care enough about the people they support.

I am saying that there is an attitude that exists which says that people with disabilities are extremely vulnerable, and can be taken advantage of easily. Because of this, very tight restrictions are put in place at a management level.

People receiving the support are the agency, or care providers, bread and butter. They bring in a lot of funding, and the contracts to receive such funding are very heavily contested. But where do the people fit into this?

The entire conversation about boundaries, and rules of not associating with clients outside of the workplace are in place because of moments that have led to abuse.

Because of the select few, both Support Worker and the person receiving support, who have taken advantage in select situations, the whole system has now become one that focuses on prevention rather than prosperity.

You can understand why, but it’s a tough price to pay for people requiring support that simply don’t have friends or family in their lives.

For all the damage that the boundaries conversation does to the spirit and mindset of people requiring support, perhaps what is doing the most damage and causing the most vulnerability is the fact that a lot of Residential Services and Support Workers within them go un-monitored for weeks, sometimes months, at a time.

That’s right, abuse can and still does occur.

Be at physical, emotional, or a combination of both, too many poor attitudes and a lack of proper training has contributed to it. But the lack of financial ability for proper training, coupled with Service Managers taking on too many different services at a time, is without doubt the biggest factor at play.

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