r/NDIS

I’m incredibly grateful to live in a country where we have supports such the NDIS. I believe that the ndis is one of our greatest human rights triumphs, and every day I think of how thankful I am to live in a society where we value people with a disability and see giving everyone a “fair go” as part of our identity.

I’m hearing a lot of people talk about the NDIS at the moment. About criminals, rorts, over servicing, and cracking down on people who shouldn’t be eligible.

I know I’m exactly the kind of person many probably think should be kicked off it. This is really scary. I have a part time job. I drive short distances in a modified car. From the outside, I guess to others that might look like I’m “doing fine.”

What people don’t see is that even with the NDIS, my life is still incredibly hard. I can’t sit myself up to get out of bed. I can’t get up stairs. I struggle to get off most chairs on my own. I need a support worker to put my shoes on. I can’t change my own sheets. If I try to pick something up off the ground, there’s a good chance I’ll fall over. The last time I tried to cook independently, I ended up with a serious injury and was admitted to hospital.

Before the NDIS, mymy life was smaller, harder, and frightening. Every basic task took enormous effort, and I was constantly injured trying to do simple daily tasks. Without support, people like me don’t magically become independent. I’d become isolated, unwell, and much more reliant on hospitals, emergency services, and supports that cost the broader community money. I don’t have family or friends to help out.

The NDIS doesn’t give me a luxurious life. It gives me the minimum support needed to participate in society safely and with dignity. It allows me to do basic every day stuff everyone else does. I don’t want to have a support worker have to help with my continence needs. I would much rather sit on my couch and watch tv than go to therapy with my occupational therapist-it’s hard work. Yes my support worker takes me for hair cuts sometimes when I can’t drive and physically manage the procedure, but the NDIS would never pay for the haircut-that’s on me. I dream to the day I can fire them all as I’m “normal” and can do all this stuff without them.

I’m acutely aware that every dollar spent on me comes out of some one else’s hard earnt taxes. I try and give back what I can by participating and contributing to society. I work. I pay taxes. I spend my working life helping more vulnerable people then myself. I contribute to my community because the NDIS makes it possible for me to get out of bed, get dressed, get to work, and function safely enough to live something resembling a normal life.

Without that support, I wouldn’t suddenly need less help. I’d just need it from different buckets of government money. I’d need more health care, and a state house for example. It wouldn’t save money, it would just shift it around. I also wouldn’t be contributing $2.25 to The Australian economy for every dollar the government spends on my NDIS plan.

We definitely need to save money but there are better ways of doing this than slashing plans and kicking people off when the ‘alternative’ foundational supports don’t exist. The agency is incredibly inefficient and requires at least ten people to handle each piece of paper. If they just did things properly once, they could probably cut their staffing bill by 50%. They harp on about fraud yet wherever we report something they do nothing. They spend millions on lawyers to try and stop participants challenging their decisions when the majority of the time the ART finds the agency didn’t act in accordance with the law (no value judgements allowed here-just did they follow the law or not). They could just do a fair review of their own decisions, or even better do it right to start with. At the same time we’re spending the same amount we’ll save on the ndis on submarines that will probably never arrive. We barely tax the super wealthy or mining giants. I could go on…

The goal should be helping people live, contribute, and participate as much as they can. To live a life as normal and similar to their neighbours as possible. That’s what the NDIS has done for me. It’s been life changing and losing it will be terrifying.

I know a lot of people don’t have direct contact with anyone using the NDIS. TheNDIS is a big, complex and confusing beast that is probably a bit of a mystery for those on the outside. Happy to answer any questions but please keep it supportive, polite and civil.

Thank you for what you all contribute.

Throughout my application last year I was told by planners, LAC, and other NDIA staff that my first plan would be intended to "fund an functional capacity assessment". The evidence I applied with confirmed eligibility, but they were clinician reports, and they said that NDIA "needed to see it from an OT". They explained that OT reports provide evidence in exactly the right wording that NDIA wants to see: a focus on functioning.

I had my gripes with that - seems a waste of money since the evidence was already there, but whatever; after all, everyone I spoke to at the NDIA explained that this was very common, and not to worry, because "first plans" are "usually very generic", and after the FCA was submitted, my plan would much better reflect my actual struggles and goals.

"Don't worry, this is just a very generic plan to fund an FCA, once we have that your plan will be much better." I swear to god I was told this by at least 3 different people plus my LAC.

After months of issues (including a massive delay with a "wording mistake" in my plan that meant the plan manager couldn't access my funding and it had to go through an entire internal review, wasting even more time and money), I finally got the FCA. It took weeks and was really stressful and obviously incredibly expensive. (Not to worry, once it's submitted everything will be okay!)

Finally submitted the FCA. The day the budget drops, I get this rejection email:

>The request to change your plan has been formally declined at this stage as the delegate determined that there is insufficient evidence to demonstrate a need for increased supports beyond what is currently included in your plan.

WHY DID YOU EVEN MAKE ME GET IT THEN???? I feel like I'm being fucking gaslit. Why did literally every person I spoke to during the process - including the actual planner - keep saying that this was a "generic plan" that was "just to fund the FCA"????

And the current plan is incredibly generic to the point where if I described my application evidence or disabilities you would think the plan was made for the wrong person. The "goals" are incredibly random and kind of absurd (I didn't even write them! The LAC did! I didn't know I had any input in what the 'goals' were!)

Without giving away too many personal details/exact numbers, my plan as it is would fund maybe a single 50 minute OT appointment a month, if some months were skipped. That's it. Oh, and the cost of plan managers to look at the invoices once a month. I'm sure you can imagine how much that reflects the OT recommendations in the FCA let alone my actual needs.

The cost of appealing this is going to cost taxpayers more than what's even in my plan.

I just want to fucking live. I don't want anything excessive or luxury or expensive. I want to be able to feed myself, leave the house, go to the grocery store. I'm not even asking to be HAPPY it's literally just the bare minimum of surviving each day without wanting to off myself because of my disabilities. Being able to see an OT/other therapist consistently so that I can BUILD CAPACITY. I don't fucking want to be on the NDIS!! I WANT to improve my capacity so I can rely on myself MORE!! If I could fund it myself I 10000% would.

I did literally everything the NDIA asked of me and followed every recommendation even when I thought it was a waste of money. They assured me at every step that my plan would be "better" (not even necessarily a lot more funding, just changed so it actually reflects my quote unquote "FUNCTIONAL CAPACITY" that they treat like the fucking gospel).

I cannot get over the fact that the letter quotes "value for money" but the cost of appealing is so much higher than what my plan currently is or would be if it had been changed to reflect actual needs.

And of course that this decision comes the day the budget drops.

Anyway, it probably goes without saying that the stress from this is insane, I'm emotional, sp if any one nation-boot licking lurker (I know you're in here) wants to have a crack at how I probably deserve it/am a dole bludging rorter/NDIS fraudster I would simply love for you to come over and help me out yourself. Seriously my shower is mouldy as fuck and the drain is covered in slime and I'd LOVE help cleaning it.

Is anyone else feeling annoyed they will be reassessed when it's bloody obvious?

I have vision loss. Not 100%, but it's permanent, and it's slowly deteriorating. To see why, you need to read my brain MRI. I have bilateral occipital lobe atrophy, plus a very large hypointense lesion in the parietal/temporal lobe junction.

I need supports to function. Help to do things around the house. Adaptive technology to interact with a computer, etc. This is because I'm suffering primary visual failure.

I lead a close to normal life, thanks to my family and the NDIS. To those looking in, I'm not disabled. How am I going to pass a reassessment review?

Hi all, I’ve been on the NDIS for a decade but I’m finally an adult, and recently I had a plan meeting for the expectations of being an adult participant.
One thing I mentioned in the meeting is it is a MUST I get travel services as I cannot drive due to my epileptic symptoms & cerebral palsy, I’m a low income earner surprise surprise, so it’s out of the question to pay for taxis/ubers, or even train/bus fairs everyday so I can live my life, everyone was on board and it was given to me, or so I thought, I looked at my plan a few months later and travel was $0 & $0 given, today I had a meeting as I needed to have a plan change meeting about other supports and when I brought up to the lac the lack of funding for travel she said it wasn’t approved, nor even put forward & that we’d have request that in this meeting.

They also cut my cleaning services, and said and I quote, “well you need to help around the house”
I do some cleaning, but I cannot clean the house with the pain I get. So now they cut it down to “lawn mowing & cleaning once a month” when before I got it weekly.
They also reduced my consumables to $250 for zero apparent reason despite begging them to allow me to use it because I needed something in that category.
They’ve also took away meal prep but it’s a weird flip flop of “you have it” “you don’t have it” I’m not one who is physically able to cook everyday as much as I’d like to I just can’t.
The NDIS also technically gives me therapy but says it MUST be an autism professional & she must treat me for my autism, despite having other diagnosed mental heath disorders.

I am working with a company to get my support worker and I just really dont think it's working out, but im struggling with what I should do. I started working with them in January, and for the first 2 weeks, I had one worker who was great and helped me to a lot of cleaning that got my space back to liveable. Then something happened, and they had to send someone else who is a lovely person but also just clearly doesn't really care. She never wants to stay for the whole shift she wants to leave after about 20 minutes. I keep getting messages from her privately on WhatsApp about my shifts being too short and asking me to change them to be longer. Now the shifts also keep being cancled (I have ended up only actually having 1 shift since march with her that she hasn't cancled) and I have also twice now had them try to charge me for more hours then I had. I want to try to find another company or find my own workers, but im not sure how to go about it.

Had my first plan meeting yesterday with someone from the NDIS. What a disappointing experience that was. Straight out of the gate he said he knew little to nothing about my disability. Thats ok - can't be an expert on everything.

He then said he had reviewed my "very well prepared" self-designed plan but there was a lot of stuff on there that the NDIS just would not fund. Ok. Understand that. I just put anything and everything on there because, well, you know - it's my first plan meeting!

And heres the part that got me. He said he did not have any evidence to support the stuff I had requested!!! Somewhere over the course of the last 2 years, the NDIS has lost the hundreds of pages of reports, notes and emails that cover every aspect of the support I need, despite the fact that the NDIS themselves compiled "everything they had" and supplied it to the tribunal for my hearing. The exact same reports I used to prepare my first plan.

He put forward a plan that he could "Approve" himself, with no evidentiary support and absolutely no idea about my disorder. It almost felt like a used car salesman rushing to meet his end of month quota. Just close the deal Gill!!!! Has anyone else experienced this? Is this the norm? They just throw plans out at you without doing any of the required reading?

I can accept his plan as is and request a plan review after I see a neuro in a month, or I can gather all the reports together again and his team and himself can review them all to be presented to a "higher delegate" which will be scrutinised over like a forensic analysis and could take another 6+ weeks. I just feel robbed for the lack of another word.

I’ve been having a bit of trouble with my support worker and was wondering if this sort of behaviour is normal. I go to the shops a lot and sometimes she will ask to go in a shop I’m not too keen on to look at things herself like check the price of an item she saw in the window or get something she needs for home. I also realised she has gotten herself a drink through a drive through during an errand I asked of her to pick some things up for me. This makes me worried as she’s taking up some of our time getting a personal item whilst I’m not there. Is this normal am I overreacting? I’m not sure I’m pretty new to support workers! Thank you

Edit: I have physical disabilities. Doing these detours, I would need to accompany her which would mean my body is hurting over something I don’t want to do and they know that.

I'm hearing (via a provider) that NDIS will at some point stop ppl rolling over funding from one Q to another. Ie if you have 3 therapy or SC hrs left at the end of Q2, you will just lose that and not be able to roll it over, adding it to Q3 funding for a big report etc. If so, this sucks. Have NDIS actually released any info on this, and if so, which funding categories are expected to be affected?

Thanks

Is it reasonable to not want to pay max NDIS rates to my support workers? I feel like $70 an hour to help me clean my apartment and support me when grocery shopping is so steep 🥲 And I really don't have enough hours to cover everything I actually need so I thought having a lower rate might mean I have more hours to use?

I used to do support work and I never charged max rates unless it was a high support needs client, for basic community participation I didn't think it was justifiable. But that's back when the daytime rate was $62.. not $70+ 🙃

Does anyone else not use max NDIS rates to help make their funding stretch or is it hard to find workers that are okay with it?

What rate would be acceptable? I don't want to shorthand anyone either, its a big help to have them!

Thank you

“This timeline outlines the key dates for implementing the Government’s plan to secure the future of the NDIS. This includes when legislation will be introduced, when consultation will occur and when changes for participants and providers will begin.”

hello all!! Just looking for some advice and knowledge about people with disabilities and being locked in a house.

My neighbour has recently finished building a house and they have moved in, i have noticed that the house is split in two. one half for a person with a disability and anger half for (what i assume to be) their parents.

My concern is coming from them yelling and banging at night asking for their door not to be kept locked, they want to not be inside. their banging on the fence could indicate they feel trapped? I feel like I need more context / advice to know if im crazy for thinking they might be mistreated or if its a legitimate issue.

ive got an open mind, from a brief google I understand there are some cases where the need to be kept locked to their residence for safety.

I plan on introducing myself to them to get to know the family better, in the end they can provide me with many of the answers I'm looking for but i would also like to see what the subreddit might think 🥰

My plan manager mentioned my funding could end up being released in smaller chunks instead of the full amount upfront, and honestly it’s stressing me out a bit. I get why they’re doing it, but I’m worried about what happens if something unexpected comes up near the end of a funding period and there’s barely anything left until the next one starts.

Has anyone here already been switched over to it? How has it actually worked in practice?

I was called about a plan reassessment.

It is for my daughter who is 15.

I want to ask others, is it ok for NDIA planner to try to collect my daughter's phone number and email address? Why would they need it at this stage? I said we'd wait until she's an adult for that.

Now the phone call also started off with the planner saying they have "concerns" over the way I have been spending the funding, which is self-managed.

I was so taken aback and offended as I had never misused the funds in any shape! I asked for specific details about what I did. They said "well there's a lot of receipts here, I can't give examples right now", but they harped on about it until I said I didn't even want to be self-managed and for years have been asking to be plan managed and no body from their end was actioning it. As soon as I said that, he changed his tone completely and dropped it.

They treated me as if I was committing fraud. "We won't take action at this stage as we assume you didn't know". I told them to give me the list and dates of all concerning conduct but they did not.

I was so shaken up as I just find these calls so stressful. In the past, I've had my daughter's needs dismissed in similar plan review meetings, but they were face to face. The attitude of the planner was so unsettling. They did reduce our funds significantly also.

They tried to belittle our goals and needs, "eg. Well all parents would do that for their kids anyway". Speech therapy reduced to 12 hours once off available for the first year of the plan, then no speech therapy after that.

I also didn't like how they referred to emails I had sent to my local area coordinator, like they have access to that communication even though it was not directed to them. They were misinterpreting things I said in emails.

Their behaviour was really jarring. I worry about my daughter in the future having to deal with this.

The other thing was that they offered me either a phone call or email communication, I chose email, then they said no there has to be a phone call anyway.

It lasted 1 hour 10 minutes. I was so rattled and defeated by the end of it I couldn't speak or advocate about anything towards the end.

What do you all think...

I am recently about to be married and will be having a very small wedding ceremony at a church followed by a small gathering afterwards for those that would like to come out and buy lunch or have a drink.

I work for a support work organisation in a very small town, and would usually do support work once a month with a young 25 year old man with autism and a psychosocial disability, just to help him with his community engagement and social skills.

This is a young man who has been through quite a lot, comes from a poor/abusive family, and has likely never attended a wedding or anything similar, and if I'm honest may never get the opportunity either.

I have also assisted/supported/advocated for him many a time to help him with many of the various home life challenges he has unfortunately faced over the span of about 4 years.

I haven't supported him for about 8 months now, as I have been having my own battle with cancer that has left me immunocompromised and unable to support him, though I am slowly getting better and will (hopefully) be in remission later next month after getting some more scans to find out.

After I'm well, I would like to continue supporting him once a month, just as I previously used to.

I know this participant thinks very highly of me, appreciates everything I have done for him over the last 4 years, and would likely be elated to attend.

However, my main concern is whether most of you would consider this too much of a conflict of interest to invite him (and a support worker of his choice to help him prepare and help him reign in some of his social habits).

I think it would be really good for him on a social and personal level to attend, especially with a support worker who can help him get dressed up nicely and feeling good about himself, but I don't know if it's totally appropriate for him to be there given past and likely continued future occasional support.

After I see some comments from this post, I'll have a chat with my manager and see what she thinks as well. I'll likely have a chat with his support coordinator too, or my manager may even query it for me.

Edit:

I will add, it's a very small town of maybe 8000 people. Everyone knows everyone. It's not uncommon that support work participants are entwined with events and gatherings where supports may also be, if that's relevant at all. I will also add that I will not be drinking alcohol, due to the cancer/remission detail.

If anyone has any follow up questions that may help clarify things, let me know.

My client discussed with me how they’ve got a cancellation fee if they cancel seven days up to a shift, now the company gets this money but me as a support worker doesn’t get. I’m just trying to understand if this is normal practice?

3 years ago I would get atleast 2 hours of the pay of the shift, now if they cancel on the day I get nothing but the company gets a cut.

They remove the shift off my app roster and I’m casual if this changes things.

Edit: I appreciate all your perspectives thank you kindly for educating me!

I know this has probably been shared already but just thought I would share it again in case people missed it as it is our last chance to show support before it is taken to parliament this week. Link to sign here

I was in a SIL house for about 2 months and I hated it so much now I am aware that each SIL house has different rules regarding medication for example but I personally hated it they had to report every day my behaviour if it is was bad or good in yellow book that each support worker who came to the SIL house for they shift that they could read to see how we’re doing with other support staff and yeah anyway I always hated that book and they used to never come out of there office which was the support staff bedroom for overnights and day shifts and but I have always had a behaviour problem regarding authority or opposition Pathological Demand Avoidance.
That what is called had to google it anyway but sometime I would refuse to take my meds some days and or they would knock on my door early hours like 6:30 to 7am to give me my morning meds and some of them would knock really loudly and say it time to take yours meds gosh I hated when they did that I mean I am perfectly fine and everything but I hate being treated like that then first I though I would think was always that yellow book how they would describe me to other staff members if had a bit of an attitude or I was argumentative sometime the staff members did the most stupidest things like making smart remarks toward some minors things like forgetting to putting away the bread or something like that and I was well you could’ve just reminded me but the staff member though I was being rude or said stop being disrespectful anyway that made me soo mad I just couldn’t I don’t know how anyone lives in SIL HOUSE they treat you hospital patients or mental ward gosh I am sorry for who is living in right now but once again not ever SIL house is like that some a really good but more then some aren’t quite shit toward participants. Anyway just curious what your experience with living in a SIL HOUSE would love to know.