Let's Focus on Access: The NDIA Planning Discussion Paper

When the NDIA casually released three humongous consultation papers late last November, it’s safe to say we were all a tad overwhelmed. There are only so many potential changes people can get their heads around on a Wednesday morning a month before Christmas. But when you’re not in lockdown, time moves fast. We now have only 12 days to get our submissions in. 

I am concerned that the Access and Eligibility Policy with Independent Assessments paper will garner considerably less feedback than its planning counterpart, primarily because the people it is most likely to impact – future NDIS participants – likely don’t realise they will be future NDIS participants. Meanwhile, the people who have previously applied to the NDIS and are in the best position to give feedback have other shit to worry about right now: the complete overhaul of planning as we know it. 

But the NDIA’s proposed changes, which you can read more about here, do warrant our attention. It is extremely important that the sector takes part in the consultation process, because we as an industry are in a position to stand up for future NDIS applicants and we know exactly what is at stake.   

As we discussed earlier this week, the questions that the NDIA has asked in the papers are, to put it nicely, not great. Like, really not great. But don’t let that stop you, because the NDIA is accepting feedback on any policy outlined in the paper. In response to the planning paper, we came up with a list of questions we wish they’d asked. Now it’s time to give the eligibility paper the same treatment, so here’s what we’ve got.

1. HOW DO WE SUPPORT PEOPLE WITH THE COSTS ASSOCIATED WITH NDIS ACCESS REQUESTS? 

 A big issue with the current NDIS access process is that people are often required to fork out a considerable amount of cash to test their eligibility: less than ideal, I’m sure you’ll agree. The NDIA estimates that Australians spend between $130–$170 million a year on assessments associated with NDIS access. In the consultation paper, Independent Assessments (IAs) are presented as a solution to this problem. To be honest, this is one of the stronger arguments the NDIA has presented in favour of rolling out IAs. You would be hard pressed to find anyone opposed to providing potential participants with some form of free assessment. However, presenting IAs in their current iteration as the only answer is highly misleading. 

For one thing, IAs would not be a silver bullet solution for all the income inequality issues in the access process, as Kylie explores in this great article. Even if IAs are implemented, people will still face out-of-pocket expenses related to getting a diagnosis and having a medical professional (usually a pricey specialist) confirm that their disability is likely to be permanent. So even if IAs are implemented, we still need to have a broader conversation about how we remove all income barriers to access requests. 

Moreover, there are many other policy options the NDIA could explore that would prevent applicants from having to pay for assessments, such as funding assessments with a practitioner of the participant’s choice. 

2. IF IAS DO BECOME PART OF THE ACCESS PROCESS, SHOULD THEY BE COMPULSORY FOR ALL APPLICANTS?

Okay, let’s assume for a moment that IAs are an inevitable part of the future NDIS. It is still worth talking about whether they need to be compulsory for all access requests. Many people with a disability have gone through about a trillion assessments over the years. If the person already has piles of relatively up-to-date assessments just lying around, what is the point of making them go through the potentially traumatic process of obtaining another one? Or, to speak a language the NDIA might understand, is this a good use of taxpayer money?

3. SHOULD WE REMOVE THE ACCESS LISTS? 

One of the biggest changes proposed in the consultation paper, other than the implementation of IAs, is scrapping the Access Lists, which allow people who have certain diagnoses or have received support from specific past programs to have streamlined access into the NDIS. They were largely a transition measure, designed to get as many people as possible into the Scheme in the shortest amount of time. 

The consultation paper stops one step short of asking people whether getting rid of the Access Lists is actually a good idea. However, they nearly get there with this question:

  “What should we consider in removing the access lists?”

While that is also an important question, it does imply that removing the Lists is a done deal and all they need is feedback on the details, which is very much on brand for these consultation papers. 

Truthfully, there are many good arguments in favour of removing the Access Lists, as well as good arguments against removing them. Wherever you land, this is still a massive change to the eligibility process which deserves to be up for discussion.    

4. HOW SHOULD WE TRAIN HEALTH STAFF TO SUPPORT ACCESS REQUESTS? 

If IAs are implemented, then the role of allied health professionals in access requests will be significantly reduced. However, medical professionals will still play a major role, providing evidence of diagnosis, confirming the permanency of the disability and raising awareness about the NDIS to patients with a disability. Unfortunately, when it comes to NDIS access requests, many health professionals don’t really know what they are doing. No disrespect is intended here towards any health workers, most of whom are doing their absolute best. But the NDIS is still a new reform, and we can’t expect anyone to understand its ins and outs without appropriate training. 

The lack of understanding about NDIS access requests is a real issue in a system where a single misplaced word can sink an entire application (more on the bureaucracy below). This problem is likely to become only more serious in coming years. If the NDIA goes ahead with its proposal to remove the Access Lists, then input from treating practitioners will be required for the vast majority of access requests. The situation is a ticking time bomb waiting to go off.  

5. HOW DO WE REMOVE THE BUREAUCRACY FROM THE ELIGIBILITY PROCESS? WHAT ARE SOME UNNECESSARY BARRIERS YOU EXPERIENCED WITH YOUR ACCESS REQUEST?  

 The first question is really one the NDIA needs to ask itself, possibly while lying on a couch in a therapist’s office, but the second question is one for all of us. To stamp out the bureaucracy, we first need to ask past applicants exactly where their pain points were. 

 When I did my access request, I was pretty confident that I had a thorough grasp of the various bureaucratic pitfalls of the eligibility process. And I did, for the most part; I mean we got there in the end. But I quickly realised I had underestimated my opponent.

The NDIA often requires applications to have exactly correct wording. A simple synonym can undermine an entire application. Applicants who are educated, able to seek support and speak English as a first language are therefore at a distinct advantage. One of the most reoccurring examples we hear relates to providing evidence that the disability is likely to be permanent. There is a yes/no question about permanency on the access request form, but having a medical professional tick the right box is no guarantee that the application will pass this essential criterion. Applications can be rejected if they use phrases like “is unlikely to change” or “will remain for the foreseeable future unless new treatment options become available.” Instead, they often need to use the exact phrases “is likely to be permanent” and has tried all “known, available and appropriate evidence-based treatments.” In reality, this leads to eligible people having their applications rejected. The NDIA needs to consider how it can rein in this bureaucracy before it takes on a life of its own.   

6. HOW CAN WE RAISE AWARENESS ABOUT THE NDIS IN UNDERREPRESENTED COMMUNITIES? 

The statistics show that there are cohorts of people with disability that the NDIS is simply not reaching. NDIA’s Cultural and Linguistic Diversity Strategy predicted that by full Scheme, 20% of participants would be from culturally and linguistically diverse (CALD) backgrounds. As of the last Quarterly Report, only 9.2% were identified as CALD. The Aboriginal and Torres Strait Islander (ATSI) Participant Deep Dive states that the number of participants who identify as ATSI is also lower than expected. This consultation paper feedback process is a rare – and frankly exciting – opportunity for the NDIA to ask these communities what’s going wrong and how they can do better. 

RANT WHEEL

Okay, so we don’t really have an alternative question here, but I just couldn’t pass up the opportunity to bitch about this particular question from the paper: 

4. How should we make the distinction between disability and chronic, acute or palliative health conditions clearer?  

You know how they say if you don’t have anything nice to say, you shouldn’t say anything at all? Well, screw that! This question really annoyed me as a person with an untreatable, chronic health condition who has spent years fighting for disability supports. So, if the NDIA does come up with a distinction, I would love it if they could send me a memo. I might learn I have been doing things wrong this whole time. But really, they won’t be able to conjure up any distinction that doesn’t exclude people who should rightly be eligible for the NDIS. For example, is MS a health condition or a disability? What about schizophrenia? At what point does a spinal injury stop being an acute health condition and become a disability? In the NDIS legislation, the word “diagnosis” is not mentioned once. The Act focuses on the impact that an impairment has on everyday life. In other words, it looks at the consequence of a disability and not the cause.  

Creating an arbitrary distinction between health conditions and disabilities will only exacerbate some of the existing inequalities we discussed above. People who speak the NDIS lingo will understand what terminology they need to use and avoid in access requests, but many others will have their applications rejected simply for using the “wrong” words. Rather than taming the bureaucracy, this change would only feed the beast. 

Okay, rant over. 

But in all seriousness, policies on the future of the access process will quite literally shape the future of the NDIS, so make a submission! You have until 10 am on the 23rd of February; you can read more here: https://www.ndis.gov.au/community/have-your-say/access-and-eligibility-policy-independent-assessments.