DSC’s Annual NDIS Conference 2024

Sydney & Online, March 26-27

NDIS News & Analysis

Potential Changes for Supported Decision Making and Home & Living

Sara Gingold

On 21 June 2021, the NDIA released two new discussion papers on Home and Living and Supported Decision Making. That sound you are hearing right now is an audible groan coming from Australia’s entire disability community. We are totally over discussion papers, and who the hell can blame us? Last year’s Support Coordination and Supported Independent Living (SIL) papers seem to have disappeared into an unreachable void. And, perhaps worse, the response to the pretty damn important planning, access, and ECEI papers can best be summarised as “we’re sorry you feel that way, but…” 

However, these two papers come as a quite pleasant, if not downright shocking, surprise. Time will tell, but they have less the vibe of FYI documents and more that of genuine attempts to solicit community input. Compared to the papers from the summer, these ask a broad range of consultation questions and offer a decent, 10-week feedback window that isn’t over Christmas. Most importantly, they appear to be trying to address problems participants face rather than just trying to cut costs (though admittedly the Home and Living discussion paper seems to be attempting both). But the most unanticipated development of all is that the NDIA might have finally learned to communicate with people who don’t read NDIS jargon for a living. I know – I’m surprised too! 

It is possible that for the first time in history, I am giving the Agency more credit than it deserves. Or maybe the last six months have just dramatically lowered our standards. Let’s take a look at what these papers say, so you can make up your mind for yourself.

SUPPORTED DECISION MAKING

The Supported Decision Making consultation paper explores some of the barriers people with complex support needs and significant cognitive disabilities experience when making decisions about their lives. This is an oddly topical conversation at the moment, since Britney Spears’ testimony at her conservatorship hearing sparked an international conversation about the decision-making rights of people with significant mental health disabilities. As bizarre as it is to refer to the 1990s pop icon in an article about NDIS consultation papers, it seems like the NDIA still believes plan nominees have a place, but the ‘gimme more’ attitude they have had to date has been toxic. 

The paper signals potential policy changes on the horizon that may have significant impacts on participants and their families. It is also a pretty great educational document about supported decision making and the steps that participants, families, providers, and the Agency can take to foster it. We won’t cover all those details here, because we want to use our limited space to focus on upcoming changes, but it is definitely worth checking out this section of the paper. 

Now it’s on to the policy changes. The paper flags the NDIA’s intention to: 

  • Review plan nominee arrangements

There is an acknowledgement here that the NDIS has been overly reliant on plan nominee appointments, using them as an easy alternative to the hard yards of genuine decision-making support. So, the Agency wants to see a reduction in plan nominee appointments over time. The paper’s proposed action plan also suggests it might conduct a desktop review of existing plan nominee arrangements. However, there are no details about what this process might entail.

When appointing a plan nominee is necessary, the paper proposes offering additional support to nominees to help them recognise and respond to the will of the participant. It also suggests providing more decision-making capacity-building support to people transitioning from childhood to adulthood, from aged 16 onwards- that time where somebody might be not a girl, not yet a womanOops!... I did it again!   

  • Increased documentation of decision-making capabilities 

The NDIA is proposing to conduct formal assessments of a person’s decision-making capabilities when entering the Scheme or at plan review. Conversations about decision-making capabilities with the LAC or planner will “become a standard part of a participant’s NDIS experience.” Naturally, for this to work, the NDIA and partner staff will need to be trained in recognising and supporting decision-making opportunities. In many ways, the success of the NDIA’s ambitions in this paper will depend on how well this training is done. But broadly speaking, collecting and documenting this information is an important step. It will allow participants to request a copy of decision-making assessments and review decisions about their capabilities. And if we are really lucky, maybe people will be able to access this information without needing to submit an FOI request. Dare to dream, people!

The other issue the paper raises is that the way trustees and guardians interact with the NDIA is inconsistent, because each state and territory has its own system. No policy solutions are suggested here but, to be fair, this is not a problem the NDIA can solve independently. Getting states and territories to do away with their individual systems and align with a nationally consistent approach is a once-in-a-lifetime event, and we used ours on the NDIS.  

You can read the Supported Decision Making consultation paper here. Submissions close on Friday 27 August 2021.  

HOME AND LIVING DISCUSSION PAPER

The Home and Living discussion paper begins with the acknowledgement that the home and living options for NDIS participants do not currently align with the principle of an ordinary life. Compared to the wider Australian community, people with disability often face a lack of choice and control over their housing options. This results in many participants living in environments that give them limited autonomy over their lives. In response, the NDIA uses this paper to propose several policy changes.

  • Downsizing SIL 

The Agency has been sending SIL providers that dreaded “we need to talk” text for a while now, and there is no doubt that the relationship has been pretty rocky over the past year. But this paper goes a step further, providing the clearest indication to date the NDIA wants to downsize SIL and diversify housing opportunities for participants. The Agency is not impressed with the outcomes for participants living in SIL settings, and it certainly doesn’t seem too happy about the billions of dollars it is throwing at this support. The paper says that “group homes often do not represent an ordinary life.” And while there is an acknowledgement that there are truly great SIL services out there (#notallgrouphomes), the paper argues that others operate “more like small institutions.” In perhaps the biggest bombshell, the paper states that “the NDIA is already looking to no longer financially support institutional or large group homes,” which it defines as “living with five or more other people not of your choice.”

If you are an SIL provider reading this, you might be freaking out right about now. But the picture is not as bleak as it might seem. The paper suggests that the NDIA has no intention of prohibiting smaller group homes. Instead, it asks us to “imagine an Australia where contemporary group homes (of between 2–4 people) were just one of many options.” (Incidentally, both papers use the term word “imagine” enough times to make even John Lennon cringe). Moreover, people will continue to need in-home support, so this just might be an opportunity for SIL providers to consider other ways of offering this service. Individualised Living Options (ILOs), for example, is the cool new kid on the block that the Agency plans to invest in. 

  • Addressing conflict of interest 

The paper also indicates that the Agency wants to address provider conflict of interest, though no specific policy options are discussed. According to their data, 2,388 people receive SIL and SDA supports from the same provider, 5,604 people have the same provider for SIL and Support Coordination, and 1,120 use the same provider for SDA and Support Coordination. This can create closed support systems, making it harder for people to swap providers for a support or to make complaints. Conflict of interest has been on the Agency’s radar for a while now. It was raised in the Tune Review and was a key discussion point of the Support Coordination consultation paper. However, aside from mutterings that it is unhappy with the status quo, the NDIA is not clearly pointing to specific policy changes. To be fair, though, it is a bloody tricky issue to get your head around, let alone solve. 

You can read the Home and Living consultation paper here. Submissions close on Friday 27 August 2021.   

CONCLUSION

This is the part of the article where we usually encourage you to get working on your submissions. We do suggest that you make a submission but, given the response to other papers and the general burnout we all feel, it is completely understandable if you don’t have another one in you. Over the past year, the NDIA has put more emphasis on the word “paper” and less on the word “consultation.” These two papers do at least appear to be changing this course, but the real test will be how the NDIA responds to community feedback, particularly if that feedback contradicts what it had in mind. 

Join us for Supported Decision Making: In Practice -It's the A-Z of Supported Decision Making in practice from those living and breathing it and paving the way forward.

Author

Sara Gingold

Sara is the Editor-in-Chief of DSC’s Resource Hub. She personifies the voice of DSC in her own passionate style and prides herself (quite rightly) on her research skills and fact-finding ability. Diagnosed with ME/CFS in 2012, Sara's lived experience of disability shines through in her wor...

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