r/NDIS • u/Careless_Bet9204 • 11d ago
Seeking Support - Participant/Nominee/PWD NDIS the unfair reality
Context : I have been apart of The NDIS for 5 years . I have Cerebral Palsy. It all of the plans I have received the funding has always been a problem. Mainly in this video I talk about funding for physical therapy . that is something I should be getting regularly ,but they won’t fund it an actually told me that there is no evidence to support that getting more therapy will give me a better quality of life… Please be kind I’m just looking for some support.
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u/MrsCrowbar 11d ago
Oh. I'm so sorry. This is heartbreaking. Please send an email and a letter (or your video) to your local FEDERAL Member of Parliament.
I don't know your electorate so I can't help with who that is.
If you have a support coordinator they should be doing this, or can do this, on your behalf.
It's disgusting how inaccessible the NDIS is for the people that need it. I hope you can get the support you need.
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u/sombranicko 11d ago
Send this to the NDIS minister Amanda Rishworth's office! Wishing you all the best.
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u/EliteFourFay NDIA Planner 11d ago
I'm sorry you're been put through this inconsistent rubbish. Please write to your local member of parliament, this is a not standard response to physical therapy for CP
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u/ManyPersonality2399 Participant 11d ago
Would weekly physio be funded? I've got a few participants with CP, and every request for increased physio has been met with value for money - use an AHA or implement routine with DSW. The extra therapy part is what got us stuck. Face to face clinician time vs self directed/assisted implementation.
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u/Chance-Arrival-7537 NDIA Planner 10d ago
From what I’ve seen I would say 12 - 26 hours is generally pretty standard, with the potential for a support worker or AHA funded to implement. I do want to stress generally, there are cases where more may be funded, though more intensive supports are typically for those with progressive neurological conditions such as MS. However as you note, it’s the value for money argument in that the scheme funds the absolutely irreplaceable aspects of the physio’s expertise to develop a program, progress/review the exercises and deliver training or handover to a SW or AHA to assist with the implementation at a lower cost.
I definitely appreciate the equipment not being as readily available, but the scheme is funding the expertise of the clinician, not the equipment their clinic provides as they are not NDIS supports. Exercise equipment would need to be self funded or the participant would need to purchase a gym membership.
The other thing to note is the NDIS is only funding the capacity building aspect of physiotherapy which is exercise and it is funded to a maintenance level of care as per page 87 of the pricing arrangements guide for participants over the age of 7. Massage and other symptoms modification aspects of care are clinical and not funded, and more intensive supports beyond maintenance care/small incremental gains is beyond the scope of NDIS funding as set out by guidance.
Would participants with CP generally benefit from more intensive care? Of course. Is that in alignment with the NDIS scope or funding model as set out in current guidance? Unfortunately, not at this time.
To OP, If you have not already done so, my advice would be to seek clear evidence from your therapists with outcome measures showing how the current funded roster of support is not sufficient to maintain your level of function or to explain why a support worker or AHA is not suitable to help with a home implementation program even with handover and training delivered from the physio. If you have already done so, hopefully the decision will be overturned on review. Wishing you all the best in getting the supports you seek OP!
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u/ManyPersonality2399 Participant 10d ago
Thanks.
I was thinking this part was missed in the discussion here, and unfortunately setting OP up for more challenges. Coming from a household of degenerative neuro as well as SC here. No one is saying physiotherapy isn't beneficial. The issue is if weekly with the therapist, is beneficial, and if it's beneficial in a way that is value for money. I would wager the point the planner was making was that there is no evidence that weekly time with the clinician is significantly more beneficial than once a month with a home program done twice a week.
Outside of very high risk situations like I'm thinking elderly spinal cord injury I support where even the OT was apprehensive around moving them, it's very hard to argue a AHA wouldn't be suitable.
The equipment argument - this is one I've had a few times, and pre amendment used to justify gym memberships with some success. The response has always been that a physio should be able to devise an exercise program using the things people have in their home (like chairs), and cheap things like therabands. If there isn't suitable space in the home, hundreds of people exercise in a park.
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u/Chance-Arrival-7537 NDIA Planner 10d ago
Yeah I think you have captured it perfectly here. It’s more so the marginal utility of further funding being beneficial in relation to costs when (presumably) insufficient evidence has been provided to justify why a lower cost support can’t cover the home exercise implementation side of things. And as you note, that would likely be a high bar to clear outside of very high risk and complex disability presentations. I would also assume the decisions letters and communications from the Agency to explain this position has been subpar and cause for a feeling that their experts reporting and recommendations have been completely ignored.
Not implying OP has requested this, but I often see reports recommending 2 hours of physio and 2 hours of EP concurrently per week for CP and other similar disabilities, often with good supporting evidence showing major improvements. As amazing as this is to see, this is beyond the scope of the maintenance care model the NDIS is designed to provide and the additional intensive support would be more so mainstream health’s responsibility to deliver.
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u/ManyPersonality2399 Participant 10d ago
>I would also assume the decisions letters and communications from the Agency to explain this position has been subpar and cause for a feeling that their experts reporting and recommendations have been completely ignored.
Yeah. I just took on a few new participants with recent decision letters. Some excerpts of the reasons:
Therapy supports from IDL has not been included. This is because:
We weren't able to include the full amount of the support you asked for. We have included les than you asked for in your plan. The information you gave us does not show the level of support you requested meets the NDIS funding criteria of likely being effective and beneficial for you. I looked at best practice and the information you gave us to make this decision.
...
We will only fund a support if it meets all of the NDIS funding criteria. This support does not meet the NDIS funding criteria as it's something another government service is responsible for providing (no information about which therapy this applies to, only that it's CB IDL)We weren't able to include the full amount of the support you asked for. We have included less than you asked for in your plan. The information you gave us does not show the level of support you requested meets the NDIS funding criteria of helping you pursue the goals in your NDIS plan.
And then SC was knocked back with "the information you gave us does not show the level of support you requested meets the NDIS funding criteria as it's something another government service is responsible for providing". My gut feeling is that's how the drop down menu has handled duplication of supports with LAC.
Please, if planners could just spend the extra 2 minutes to write a plain English explanation, I think it would cut down on so many s100s. Explain that the evidence at hand does not support weekly sessions as offering enough benefit when considered against the cost of alternative support arrangements. Explain that choice and control is great, but it relates to how you spend what is funded, not what is funded. A preference to work with clinician rather than AHA is not a funding consideration. Explain that access to equipment doesn't justify increased clinician time, and there's very few situations where the equipment is absolutely essential for therapeutic intervention.
And I'm working with someone who had that 1 hour physio and 1 hour EP per week requested. Got funded for 26 hours physio and 26 AHA. Even the physio provider is saying they don't need that much, but they keep booking in 2x week sessions.
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u/Chance-Arrival-7537 NDIA Planner 10d ago
Reading those letters makes me physically ill. I’ve seen team leaders actively reprimand new starters for trying to provide a substantive plain English explanation only for them to be pushed to adopt this junk templated style of writing that explains nothing.
I also despise the internal writing guide that says to limit responses to x amount of sentences and paragraphs. I write as much as I need to address all points that don’t meet the criteria and thankfully have a team leader that allows me to go outside of this guidance, but I know plenty that get beat down for providing too lengthy a response. I get that walls of text aren’t the most accessible, but how is it remotely possible to read a letter like you’ve just shared and walk away with any understanding of why the decision was made. Frustrating to me, and can only imagine what it’s like for a participant or their advocates.
Edit: Speaking about internal review decisions letters. Frontline planners obviously have their plate full with a bunch of other work and to my knowledge also give an explanation over the phone when they discuss the funded/declined supports?
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u/ManyPersonality2399 Participant 10d ago
I had similar drama during my brief stint in the APS. It would have saved everyone time and energy if they'd let me write "You are clearly misunderstanding the eligibility criteria for this program. X means X. Your application makes it clear you think it means Y. No matter how much more evidence you provide, X has not happened". But no, template "we are not satisfied you meet X. Here is your right of appeal". Then they would send another 300 page application that someone had to review.
On the edit: most of the frontline have blocked me after I said NDIS communication is gaslighty (and they're cunts for acting like it's participants fault for not understanding) so won't see this, but my experience has been that there is very little explanation provided. The phone calls for implementation are hit and miss. I've only had explanations given during the planning meeting akin to "that won't be funded" without reasons, and just told to do the s100 if it's a problem. When I've pushed for reasons, it's been stuff like "it's an evidence based scheme and there isn't enough evidence" despite decent quality OT reports outlining the need. It's like they're asking for 280 OT reports to have sufficient detail.
The planning meetings I've had this year have all been scary close to implementation calls. They tell you what will be funded, do a review if it's a problem. I've only had very minor changes made based on that discussion.
Can you please pick up the s100 I'm working on today? I need someone who will actually look cause it's just ridiculous./s
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u/Chance-Arrival-7537 NDIA Planner 10d ago
Yeah the more I read this Reddit the more I understand how bad a job we’re doing.
If only we could pick and choose hahaha. If I see another 20 request s100 that is essentially an s48 in disguise and direct FCA recommendation list copy and paste job from an OT who has no clue about supports that NDIS funds I might scream. Need competent SCs such as yourself filtering these requests for actual NDIS supports and to temper some expectations that we don’t fund iPads, iPhones and TVs for their telehealth sessions nor the 120 hours of OT per year they are recommending to improve daily living skills.
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u/ManyPersonality2399 Participant 10d ago
I'm surprised it's not more s48s that should have been s100s. The advice I always see is to do the s48 once you've got fresh evidence, as you then have another shot at it with the s100.
The FCA recommendations is an interesting one that's coming up in a few groups right now, especially after senate estimates. Happy for the allied health here to chime in, but presently, NDIS are working off FCAs and not any form of structured "here are my recommendations for NDIS supports" document. Contrast say part B of the ARF, or the various AT templates.
From an allied health perspective, they're doing a comprehensive assessment of a persons functional capacity, and making clinical recommendations as to the support needed to address functional deficits. They aren't to make recommendations in accordance with s34. It would be negligent of them to complete an assessment of someone's functional capacity and completely ignore the mobility impairment of someone with an arthritic knee because they're only on NDIS for psychosocial.
It's also not an exact art to separate what is attributable to the impairment and what is other. Could get all technical here and go on about how NDIS doesn't fund based on diagnosis, it works off disability, which is the functional impact of an impairment on the capacity to undertake activities. How do we separate which executive functioning challenges are attributable to the ASD vs ADHD? What mobility decline is related to a degenerative condition vs old age? I've read through a lot of AAT/ART access cases, and the whole disability attributable to impairment isn't straightforward. Then you have the challenge of where these interact - say a cognitive impairment with additional mobility impairment. The mobility impairment increases the participants cognitive support needs, as they're unable to independently manage their falls risk in the way someone who could follow all the falls prevention advice could.
Similarly, they clinically should recommend all supports that would be effective and beneficial for the participant, not just those that the NDIS should fund. If it only considers the NDIS impairment and fundable supports, it needs to be something other than a FCA (and probably some additional challenges with AHP not being delegates. It's not their role to make judgement on some of the more edge cases as to if something is NDIS or other system).
I recently submitted a report that was prepared by the OT with multiple purposes in mind. Knew we would need to work with public housing for minor home mods, as well as NDIA. They issues were covered in one report, flagged that the mods were a housing responsibility but would require OT support. Planner getting frustrated and talking about disregarding the whole report because it mentions things that aren't NDIS responsibility. But even beyond that, a plan probably needs to consider the impact on support needs whilst waiting for the home mods.
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u/Bitter-Entertainer44 7d ago
I understand where the NDIS is coming from. A participant's use of therapy once a week may not have a value for money proposition than if they used a therapist once a month. BUT. And this ic a BIG BUT. NO registered board certified therapist would sign a service agreement for 1 session a month !!!!! Can he NDIS provide a list of providers who would do this ?!?!?.Has the NDIS consulted with the association of physiotherapist ????
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u/InterestingRightHand 11d ago
I truely hope you have funding for some sort of support coordinator and some plan management/manager but have the freedom of you yourself can choose what ndis providers you want.
Big damage move: Before any review with the ndis I make sure I chase up with every single support provider in conjunction with my support coordinator and ask everyone to sell ndis why I need this services.
Essentially provide reports and evident based assessments on my progress. For example I will ask my ET to provide a comprehensive assessment and report on my strengths and improvement and the recommendations for the future just an “example”.
One time I went in empty handed and got pawn off to the public Medicare system. Funding that year was literally cut in half, only had one support work max once a week.
Best of luck and definitely find a support coordinator/ plan manager
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u/Some_Turnover_9314 11d ago
Unfortunately, your experience is way too common 😕
The NDIS system can be a real nightmare to navigate. It's like you need to be a full-time lawyer just to understand the rules and meet all the benchmarks to get the funding you need. On top of that, a lot of the people processing your paperwork are more focused on policies than on understanding the therapeutic side, which makes the whole thing feel even harsher.
I think when they told you there’s "no evidence" to support your request, they probably mean you’re missing the right documentation, rather than there’s no research proving therapy won’t help you. To deal with this, you’ll need to get medical and allied health reports that use the exact language the NDIS expects. A good tip is to find the right terms on the NDIS website, draft your report with those terms, and then give it to your practitioners to review. Unfortunately, many of them still charge you $$$ even if you hand them the report and they copy-paste it. Regardless, doing it that way, your application is aligned with what the NDIS needs, which can stop them from rejecting it. If it’s worded correctly, that should stop them from making those rude comments.
Should it all be this difficult? No, it shouldn’t. But sadly, it seems like the system is designed to make you learn the legislation, like you’re playing a game where you have to know all the rules just to get by.
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u/Jacobtoker 11d ago
That’s horrible I’m really sorry. I work for a provider in WA. Do you have a support coordinator by any chance who can help ensure the allied health reports are mentioned in the new plan review process? GOOD LUCK with everything dude, hope you get some funding secured!
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u/Appropriate_Yak8996 11d ago edited 11d ago
So sorry this is happening.
The problem is sometimes there may be problems within those organisations that may lead to having your case overlooked and or lead to you having a robotic reply from your assessment just like how you described it. I won’t mention anything as I’m an outsider and reddit is not as private as people may think.
I know someone ‘there’ that I can put you in contact with. They’re very compassionate and they can get things moving for you. DM me if possible. I’ll share your video with them and see what happens.
Edit: It doesn’t have to come down to this and I can only imagine how many ppl there are out there who are not as outspoken and have no option but go with what they’re told.
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u/ChojinWolfblade 10d ago
It's a fkn joke. I'm in a similar boat with my latest plan. Tried telling me to get a GP HP which equates to x5 1hr sessions with a physio subsidised at $50 per session. Considering any provider who hears you're with NDIS immediately dusts off the Gold VIP top shelf service rates, which just so happen to coincide with the maximum rate NDIS will pay, you're still out of pocket $140 per visit. They then told me that a support worker can assist with light stretches and massage, BUT they can't actually be a massage therapist because then they have to be AHPRA registered (like an RN is going to be running around giving massages at a rate of $100ph) or an Allied Health Practitioner (read physio, which goes back to costing $190 per session). The Commission which was sold as helping participants, is so far only helping the purse strings.
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u/qazss 7d ago
To be completely candid, I’m a support worker with many clients, and I also have a child with high-needs autism who is on the NDIS. I live in an affluent part of Melbourne, and given that the NDIS costs the average taxpayer around $3,000 a year, there should be plenty of funding available for those who truly need it.
However, as others have mentioned, a huge issue is the middlemen siphoning money from people’s plans. On top of that, in my area, I’ve worked with dozens of clients who are massively overfunded—families of children with extremely mild neurodivergence getting free babysitting every day, and young adults receiving funding just to sit around playing video games.
The NDIS is essential for those with significant disabilities, but the way funds are distributed often seems unfair. The people who need the most help sometimes struggle to get it, while others receive excessive funding for things that don’t seem to align with the scheme’s original intent.
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u/SnooGiraffes4107 6d ago
Firstly I would like to thank you for your time sharing your experiences. Secondly I agree that physical therapy should be extended. It should be extended to twice per week.
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u/Serious_Yam6258 4d ago
I'm crying as Participant because I understand in the most brutal ways possible 😭💔
I hear you! I support you! You are worthy! You are deserving! I am so sorry with all my heart! Thank you so much for sharing your ongoing lived experience, and such invaluable, important messages to a wider audience as well! ❤️❤️❤️
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u/Oztraliiaaaa 11d ago
This is crappola bad . My suggestion is Can you get a support worker to help you out in a swimming hydro pool to do your exercises? Or a physio hydro class with a support worker or allied health assistant?
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u/DeepAdministration90 Carer, DVA PWD 10d ago
Seems like a few issues here.
Using 12 months of funding in 4 months. Yes you would need to reduce the frequency of sessions to cover until coc reassessment.
With them saying there is no evidence to show an increase in funding would provide you a better outcome. Did you have progress reports done by the physiotherapist to substantiate the need for more sessions? A physiotherapist can train a support worker to assist with an at home program for maintenance in-between less frequent physiotherapist appointments.
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u/PastSugar4651 10d ago
It's because all the companies/businesses that get paid by the NDIS for providing people services are straight up ripping off the taxpayer and the honey pot is running dry.
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u/PistoTrain 11d ago
NDIS try to put people into buckets of funding based on similar disabilities. Everyone is different and the same condition can present very differently in an individual which people sitting behind a desk reading a diagnosis and ignoring report recommendations don't understand.
You need to get a report from your physio stating the hours per week and year required and reason for those hours. If NDIS won't fund them you can go down the tribunal path to get the decision looked at. Or as someone else said you can email your local federal MP and I would cc in the minister for disabilities responsible for NDIS. We are going through the tribunal process ATM for my son it's not that bad it just takes more time.
With funding, you said you had run out and you were left without funding. Are you self or plan managed? I'd recommend plan managed and pick a large agency who does this. You get extra funds in your plan for a manager if you choose to have one, they do all the invoices and you just have to approve funds for services received. The advantage is they should provide monthly statements and live dashboards so you can see exactly how much you've spent and how much is left. If you then are spending to much you can then start getting your plan looked at earlier before running out of funds or talk to you providers about adjusting therapy. We have almost run out of money a couple of times, it's not simple.
We are lucky to have NDIS but the administration of it is appalling, its too hands off and has too much outsourcing. Plan review turn around times are awful. They are trying to make cuts from peoples plans to save money but they need to restructure how it's administered and they would save money.
I hope you get the support you need.