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Recent NDIS changes

Transcript for Deafblind Information Australia Webinar 11 June, 2026

So tonight I'm going to talk about some of the recent NDIS changes that might be relevant to participants with CHARGE syndrome. I'm going to outline some different assessments and supports that can be really useful, as well as the new support needs assessment tool that's coming. And I'm going to talk about what evidence NDIS delegates are looking for in your plan reassessments. And I'm hopefully going to cover the ways that I can help you in my role as Project Officer. 

So because we're talking NDIS, I'm going to be using NDIS terminology throughout the webinar. So when I'm talking about participants, these are our children and adults with CHARGE syndrome that are on the scheme. Representatives are the parents and carers. The partners are the local area coordinators and the early childhood partners. that you're already probably well connected to in your community. And the delegates when I refer to them are the NDIS planners who make the decisions about what ultimately goes into the plans. And it's important here to note that the LACs and the ECPs, they're not NDIA staff. They are external organisations that are contracted by the NDIA. 

So on to some of the changes. New applicants to the scheme will receive a notice of impairment when they are deemed eligible for the scheme and these notices will list the impairment category or categories that a participant meets access requirements for to the scheme. It will also state that their impairment is permanent and they're eligible for the NDIS. And at the moment there's no timeline for existing participants to receive these notices, but it is planned to be rolled out. Eligibility is no longer diagnosis based. So the lists of disability and diagnoses, the list A and B are gone. They're no longer used, and new participants, when they come onto the scheme, need to meet the criteria for one or more of these 6 impairment categories: sensory, cognitive, intellectual, neurological, physical and psychological. A person with CHARGE syndrome almost always meets NDIS access requirements because CHARGE causes permanent impairments across multiple domains and results in substantial functional impact in their daily life. And when I talk later on about functional capacity assessments, you'll see the domains that I'm talking about. The NDIS doesn't require every impairment to be present, only that the combined impact is significant and lifelong.

Check-ins are now taking place for existing participants and we'll look at what these are in the coming slides.

So there's been the introduction of the ICAN assessment and they are the new support needs assessment tool being rolled out by NDIS. They're currently only used with over 16-year-olds who are primarily new participants onto the scheme or participants with less complex needs that are due for a scheduled planned reassessment. It's not being used nationally. And the NDIA has not released any documentation indicating a pediatric version of the ICAN or a new universal tool for under 16 year olds.

Functional capacity assessments are carrying more weight. So we'll look at these in more detail. And there are funding periods in all new plans, and they're quarterly. So every year funding is broken up into 3 month increments. And given that, if you have an assessment or a block of therapy that's needed at a particular time in a participant's new plan, make sure you let the partner or the delegate know. So this can be built into the plan. They will put extra funding into a quarter of the plan to line up with when that assessment or that block of therapy is due or expected. Unspent funding from one funding period will be rolled over to the next, but not from one plan into a new plan. 

So we're going to look at these check-ins that are occurring now. Families and participants are getting these calls. Existing participants will be reassessed when their plan comes up for renewal after the new framework is in place, and they maybe have reassessments at key transitional periods. Until then, these check-in phone calls with participants or the representatives will be done. And they're to help ensure participants' plans continue to meet their everyday needs while the system continues to change. They're carried out by the LACs and the ECPs if you're already linked in with them, but they might be carried out by the NDIS planners or delegates if you haven't already been linked in to the partners or if it's a more complex plan. You'll be notified in advance that this call is coming up and booked in. And when they do contact you to set up this phone call, make sure you get confirmation from them that it's a check-in and not a plan reassessment because they won't necessarily use that language in that phone call. If it's a check-in, you don't need any reports. It's just a conversation, but there's things that you can consider and we'll cover them in a sec. And if you're not ready for that phone call for the check-in or you haven't had time to think about what they're going to ask you, you can ask for it to be postponed. So if you have a check-in coming up, consider if anything has changed. And so that might be a new diagnosis. It could be you've had a new assessment done recently that's recommending different supports. You could have a change in hearing, vision, balance. It could be a change in fatigue. Communication needs might have changed, school or community access could have changed, or there might be a change in behaviour. Also think about are there any important transitions coming up for the participant? Are the current therapies working or not working well in the plan? And are the goals still relevant? A lot of goals that are in current plans are from years ago because they've been consistently rolled over. And is the plan budget going to last for the full plan period? And there's three possible outcomes of this check-in phone call. If everything's going well, you can tell them that you're happy with the plan and no review is needed. Or if you need small changes, ask for small changes only. Or if things have changed markedly, ask for a full plan reassessment, but not today as you want to gather all your documentations and your evidence before you book in that meeting.

And if you do need a full plan reassessment, make sure you have recent reports, quotes for new equipment, and an updated carer statement ready before your plan reassessment date. 

So functional capacity assessments. These assessments typically happen over a number of sessions and they look at a participant's ability to perform daily tasks across the day in all their natural environments. They assess different domains. We'll look quickly at what those domains might be and they might do them in person or via telehealth or a combination of both. Quite often they might do the first one in person and they'll do subsequent ones via telehealth to save on the travel costs. If a participant's disability support needs change, getting an occupational therapist to do a functional capacity assessment is really good evidence for NDIS. And they are typically done by occupational therapists or OTs, but they can also be done by physiotherapists, psychologists or medical specialists, but they must be qualified to administer these types of assessments. 

So when talking about functional capacity assessments, we need to consider these four questions. Can the participant do these things consistently across all their environments every day? What does it cost them to be able to do that? What support needs to be in place in order for them to do it? And what happens if that support isn't there? So these are the domains that might be assessed in a functional capacity assessment. Self-care, mobility. Mobility can be quite key for participants with CHARGE because CHARGE affects balance, spatial awareness and physical confidence in ways that aren't always visible. For example, a person might be able to walk on a level surface but requires supervision on stairs, uneven surfaces or in unfamiliar environments, or they may even need a wheelchair at certain times for support. A good functional capacity assessment should hopefully capture this much detail. They may also look at fine motor, sensory processing, communication, learning and cognition, community access and social interaction. There's lots of domains. Domestic life, self-management. And in terms of self-management for adults with CHARGE who are seeking independence, this domain is particularly important and often undersold. Safety and risk, fatigue and physical wellbeing. 

So now we're going to look at the new support needs assessment tool, the ICAN. So it's a core tool that's going to be used by NDIS in the new support needs assessment. And what it's going to do is inform participant budgets under the new planning framework that hasn't been rolled out yet. As I said previously, it's designed for people aged 16 years and over. The Centre for Disability Studies, the CDS, developed the ICAN and launched it in 2002. So it's an assessment that's been around for a really long time and they've refined it over the years. And now the University of Melbourne has partnered with the CDS to support the NDIA to adapt the tool for the new NDIS planning framework. And it will be administered by certified assessors, not therapists. And at the moment, the NDIA is building a national workforce of certified assessors who will be recruited from across Australia. So the ICAN should be an appropriate and helpful assessment tool for adults with CHARGE syndrome, but it's going to work best when paired with specialist assessments that explain the person's full sensory, communication, mobility and medical needs. And here is just a list of some of the assessments that may be needed in addition to the ICAN. 

So evidence gathering for NDIS, what is evidence? Evidence is the documentation that you provide to your NDIS partner, usually prior to your plan reassessment. What you need to do is gather functional impact of evidence of hearing, vision, balance, communication and feeding. You need to track what supports are helping and bring in some real life examples to your planning meetings or your planning reassessments. What's working really well in terms of your NDIS support, but also is there a gap there and what's the repercussions for the participant because they don't have that support in their plan. Good reports make up a part of your evidence for the NDIS and they link the impairment to daily living and supports needed. And in my role as project officer, I can help you prepare for NDIS planning meetings and reassessments. And the ways that I can do that is by reviewing and getting feedback on reports from your NDIS providers, reviewing current NDIS goals and supports, and helping identify if there's any gaps there and what new supports might be appropriate. And we can look at the goals that you've got that might be more relevant for the next plan. I can also review specialist reports if they're open to suggestions and feedback. And typically we know that reports from specialists and health professionals aren't well written for what the NDIS needs. But I have found that paediatrician reports tend to be the exception to this. So next slide, Madelene. 

So to be considered deafblind, we know you can have any level of combined vision and hearing impairment. But what not everybody knows is that the NDIS recognises dual sensory loss. And this can unlock services and supports like communication guides that Madelene's going to talk to, skilled support workers and environmental modifications. Now the partners and the delegates will not necessarily raise this. So it's really important that representatives and adult participants do raise this in their planning meetings or their planning reassessments. And just some tips. Representatives won't leave a message on your phone unless your message bank has your first and last name. I always recommend that you ask for any correspondence, even phone calls from the NDIA to be put in writing so you have a record of it. Also your partners, it's good to have them put things in emails for you. And have a support person with you for plan reassessments and make sure you carve out some time to do something nice for yourself after that meeting as it can be really emotionally taxing for you.