Transparency in Plan Writing and Submission – The One “Quick Fix”

I have 3 children (redacted and redacted years old) all with ASD and all on NDIS. They also have other disabilities, but from what I can work out these have not been considered and so do not receive funding for these. I myself have bipolar disorder, but am not a participant.

I will start off by saying that I am thankful for the NDIS and that my kids have been able to access therapy that I could not have given them without it. However, the process to get each onto the NDIS was difficult. And then there is the each subsequent review and the stress of knowing that each time there is a significant risk that the plan could be cut and they will miss out on therapy, which has been emotionally and mentally exhausting. This did happen, and for one child I took it to the AAT this year and we were able to get the funding he needed. But my mental health did suffer for it.

Although I can go through all the difficulties we have had, for most I cannot suggest a “quick fix”, hey are long term entrenched issues, and I will leave it up to more capable people to find solutions.

Transparency in plan writing and submission– The one “quick fix”

There is however one issue that there is a really easy fix for. And I believe it will not only make the experience better and easier for participants but can avoid at least some participants having to go into the review process and ultimately reduce the number of people having to go the AAT to get their needs met. It is to do with transparency in the process of an LAC helping to write a plan and what gets submitted as evidence to the NDIA for assessment.

What I am suggesting is that once the participant or representative meets with the LAC and then the LAC writes up the goals and statements in the plan, these are shown to the participant BEFORE submission to the NDIA. The participant can then make sure the goals are expressed as they would like them and are a true representation of what they want, and that the information contained it true and correct. If there are errors or misrepresentation of their disabilities, situation, or goals they can be corrected at that point. Because how can the NDIA make fair decisions about a participant if the information they are presented with to assess is not accurate?

No one should have to do an FOI request just to find out what has been submitted about them and why decisions have been made. This is apparently happening, and it’s absurd.

LACs should assist participants, not be gatekeepers

From what I was able to find on the NDIS documents online, the purpose of the LAC with respect to plan writing is supposed to one of assistance. But from my experience of having to work with the LACs to write plans and reviews, and from reading of other participant’s experiences, the reality is that they often act as a gatekeeper for your information and goals, deciding what then gets submitted to be assessed for the plan, effectively controlling how much funding you get and what disabilities will be covered. But I do not think there is any requirement that LAC’s have qualifications in any medical or allied health field or disability care. This is not appropriate if they are making decisions about disabilities rather than just assisting.

The LAC you get assigned can have an impact on the experience of writing a plan. The organisation I have worked with seems to have a very high turn over of staff. I have never had the same LAC for a review twice.

After a review I had a plan come back in 2021 that just had really basic errors in it and had statements in it that the LAC had just made up. The basic incorrect information was things like his grade at school. This was important because he had repeated a year at school because of his difficulties with social skills (he was doing well academically).

Use it or lose it

The ”use it or lose it” mentality around funding is very problematic. Even if this isn’t stated openly, every knows this is effectively what happens. Not using funding does not mean that the participate does not require that support, but is much more likely to mean they were unable to access the support, which could be for a variety of reasons.

One effect of the use it or lose it is that you see participants asking other participants toward the end of the plan how to use the remaining funds they have left before the next review, because they haven’t been able to use it and are worried that if they don’t then their plan the following year may be cut. Without this fear there are funds that would have been available to plans the following year. This is not good for them, or the NDIS.

It is particularly unfair for areas where services are hard to access like rural areas, however I can tell you that even in Sydney accessing services can be hard due to a lack of practitioners, those with their books closed or waitlists or 9-12 months, and increasingly those that do not want to deal with NDIS. The turn over of staff in some places, particularly OT and Speech Therapy from my experience (and from talking to therapists) is very high. I have had my kids on waitlists for services for 9 monthsmonths or more and finally been assigned a therapist only to have them quit that company 3 or 4 sessions in. This has happened more than once. You then have to go through the process of finding another service, serve the wait time (if you find one with books open) and then start from scratch with someone knew. It is very demoralising, and exhausting. Our OT recently quit, I don’t have the energy to start again at the moment and I hope that not using the funding for OT in this plan won’t effect the next one. But I am expecting it will. In a global pandemic it is also unfair to punish participants for not being able to use all the allocated funding because people could be avoiding services because they are at higher risk from covid.

Multiple Disabilities

I am trying to find out more from other participants how to go about having multiple disabilities added, those does not seem to be an easy process. One child has multiple disabilities, physical and

mental, but even though the original LAC (who seemed great but we didn’t see after that) put the ones diagnosed at the time into the plan, they didn’t seem to be covered. I did not understand the process or what this meant (even what it meant to have to have them accepted) until recently by joining FaceBook groups for people on NDIS where participants share information and ideas and sometimes just vent in frustration or ask for help in complete despair.

From what I can find the NDIS guidelines on multiple disabilities do not line up with the legislation, persons are getting false information from NDIA staff or LACs about what is and isn’t possible. People are referring to legislation and having to understand complex documents just to navigate this. Keeping in mind that those with multiple disabilities are likely the ones least able to have the energy mentally, physically or emotionally to deal with having to do this. I myself literally have a PhD in applied science. I still do not understand how all this works. Dealing with NDIS, the public and private health systems, Medicare and Centrelink is coming pretty close to breaking me this year. It should not be this hard. Multiple disabilities contribute to each other. The sum is greater than the parts. How do you fragment a person into categories like the NDIA seems to want to do?

I’m trying to work on what to submit for my child’s next plan. It ’s confusing and I’m beyond exhausted already.

Complex Pathway

I have come across references to a “Complex pathway”. With 3 kids on NDIS this may be relevant to me, I just don’t know. It shouldn’t be this hard. In the reviews I keep getting told I should be able to just do everything myself with a little guidance from therapists. I cannot be OT, speech pathologist and psychologist to 3 children with additional needs while dealing with bipolar, as a single mother. I thank the NDIA for their high opinion of my abilities. But I assure you, I am not capable of this. Reading their replies that I should be able to do all this makes me feel like a failure, while feeling angry and frustrated at the same time.

Psychosocial Disability

I have had Bipolar Disorder for 18 years. I have never heard the term psychosocial until this year. I asked my psychologist what this means and she agreed that the term is unhelpful. Is there any research behind how the NDIA decides what is and isn’t in this category? Again, how do I fragment my life into psychosocial and whatever else you want to define the rest of my life as. Mental illness affects every single part of your life. This makes no sense to me.

I have had 4 LACs tell me to apply for myself over the last 3 years. Basically they all say “what have you got to lose”. But they do not understand there is a lot to lose, that the process takes a toll. The more energy I spend on that the less I have for my kids and for looking after myself in other ways.

It shouldn’t be this hard.

I have rushed this submission to get it in by the deadline so it may not be worded as clearly as I would like. It also may be missing points I would make if I had longer. Please know that for every submission from a person with a disability or carer that you get, many more have been unable to write a submission. So many people are asking others to make sure they submit if they are able because they themselves cannot. They talk about being unable because of trauma around it, or just not having the physical or mental energy, not being able to put it all in words. I was also going to skip

It because I didn’t think I could do a good enough job. But others were begging that those that can, do, even if just a few lines. So I hope that what I have written is helpful.

The NDIS is valuable in so many ways. But they way the system is run needs change. It needs to be informed by the experiences of this with disability and their carers, not accountants and bureaucrats.

I’m asking not to be identified in this submission, because I don’t want my name published on the internet. People are can be judgmental and cruel. Just read any comments section on social media. Even within the disability community some people can be dismissive of others or think they are not worthy of help because they view their disability differently. At times the government and media have amplified this. It’s sad, but that’s how society is now.