What I Wish I’d Known Before the NDIA Called: A Rights Guide
I am multiply Neurodivergent, I am a NDIS participant, I am the parent of an NDIS participant and I'm an OT working primarily in the NDIS space, mostly with Neurodivergent adults.
With both of our plans due for renewal and with one positive and one not so positive plan meeting last year - I wanted a different experience for us this year. Thus far, I have had one positive experience, and the beginnings of what became a deeply concerning interaction with the NDIA. Thanks to other's sharing their journeys in posts or blogs like this one I was more prepared. I've made a list of your rights that I hope may help should you or the people you support also get a call like I did last week from the Agency.
Your Rights When the NDIA Contacts You:
You have the right to preparation time.
If you get a phone call out of the blue from the NDIA - you do not have to talk with them on the spot. You can ask to arrange another time. You don't need a reason or an excuse. The reason can simply be: I didn't have time to prepare to talk with you today - let's arrange another time.
You have the right to support.
You can (and in my opinion should) request at least one support person. It can be WHOEVER you want. I would suggest at least one person present with knowledge of NDIS processes so they can ensure your rights are protected. When asking for support, I recommend using the words "Support Person" - this is your legislatively protected right.
You have the right to written communication.
You can ask for them to email you or provide written follow up to their call, especially if it's out of the blue. This ensures that whatever they say on the phone is something they're prepared to put in writing, and offers accommodations to any recall or auditory communication barriers you may experience. If they're working within the rules and protecting your human rights, they should have no problem doing so.
You have the right to accessible communication.
You can ask for meetings to be done via video call. With ~55% of communication being non-verbal, and Neurodivergent people often experiencing communication differences like Alexithymia, receptive language differences or auditory processing differences - this should be a standard inclusion offered, not only available on request.
You can do a video call with your camera off, or without looking at the screen all the time - if eye contact is not comfortable for you.
If delegates aren't comfortable to see the face of the person whose life they're impacting for the next 12 months, it raises questions about whether they're in the right role for supporting people with disabilities.
Video calls may offer a protective factor if you become dysregulated or distressed; it's visible to others on the call and the meeting can be paused and restarted on another day when you're ready. Many people accessing the NDIS have experiences with trauma and discussing whether your support needs are going to be funded is an emotional conversation - an accommodation that allows for a trauma informed approach is something you can ask for.
You have the right to understand timeframes.
If someone suggests there's a timeframe they have to meet - you're entitled to ask them to spell it out clearly, and in writing. Check-ins/planned re-assessments can occur from 90 days before your plan end date and you have until 6 weeks before to submit documentation. You have the right to be able to ask a trusted person to verify if the timeframe given falls within the actual timeframe rules. This is especially important as gathering evidence can often take time to organise with therapists.
You have the right to understand the process.
If they want to complete a check-in, you're entitled to know, will there be further meetings and what decisions are made at each step. This means you are prepared, and know when is the key time to ensure you have all your evidence submitted with enough time for them to actually review it.
You have the right to proper consideration of your evidence.
If they're having a plan approval meeting within 1-2 days of your check-in, you can ask (in writing) that they allow adequate time to review the evidence provided. Your precious plan funds paid for that evidence. You may have gone without other supports to afford the evidence the Agency has requested. It forms the basis of their decisions about your life, and needs to be adequately considered.
You have the right to request a different planner.
This is always an option available to you and can even be requested during your meeting.
You have the right to regulate and pause.
You're entitled to ask that meetings be paused or rescheduled if you need time to regulate. You don't have to explain, especially if you're experiencing dysregulation or distress at the time.
You have the right to accommodations.
You can ask for time to think before replying. You can type your responses instead of speaking. You can ask for video or phone formats. You can ask for support person/s. These are reasonable adjustments.
You have the right to understand decisions.
You can expect that they won't be able to approve everything requested - they function as an insurance agency after all, and we all want the scheme to be sustainable.
You are entitled to ask why they're declining recommendations.
NB: The Agency does not publicly release information about what minimum/maximum hours they will approve for supports. When they say "the maximum I can approve is ___hours," the decision is based on their database/algorithm that says "This diagnosis/disability/level can have a maximum of X hours." This may differ to your reports or therapists recommendations - which are based on their assessment and clinical judgment - not the agency's diagnosis based formula*
You have the right to know what would change their decision.
You can ask what evidence would be needed for them to approve declined supports, and explicitly whether getting this evidence and requesting a review within 90 days would lead to reconsideration.
You have the right to review.
You can request a plan review within 90 days of approval. Yes, they'll mention your plan could be reduced OR increased. Fear of losing support is real and valid. It's okay to discuss this with your team and take time to decide. You do have options.
You have the right to know your options at every step of the process.
And lastly, I shouldn't even need to be writing this list. An agency established to support people with disabilities shouldn't be the one responsible for further marginalising us, with so many steps, loop holes and unfortunately KPIs that push delegates to pressure vulnerable people to agree to things they didn't know they had other choices for.
The state of the Agency comes about when disabled people and their lived experiences are not at the heart of decision making, and instead budgetary and political agendas aimed at maintaining power keep 3-year, short-sighted goal setting at the helm.
So, until that changes, knowing your rights can help protect you or the truly incredible people you work with, in ensuring the protections that are there for them, are followed.
