Hey everyone, I’m feeling a bit overwhelmed and frustrated lately, and I wanted to check if anyone else is feeling the same way. I’ve been involved with the NDIS for almost three years now, and in that time, I’ve had a support coordinator and some other supports, but it’s been a constant battle.
Recently, they cut my funding by about a third. The reason? Apparently, I wasn’t using my support workers enough, but honestly, I just didn’t see the point. They don’t feel like they can help me, and I’ve told them that, but the system still expects me to use them or else I lose out on funding.
At my last plan meeting, I had a specialist write a detailed report with recommendations for my support needs, it was about 40 pages long. The report lined up with what my mental health professional said and what my support coordinator recommended. But guess what? The NDIS didn’t seem to even take it into account, and my funding got slashed anyway.
It just feels like the whole “use it or lose it” policy is completely unfair. I’m on the Disability Support Pension and it’s hard enough to manage on that, but now I’m being told I should be able to afford everything else, including expenses that directly affect my condition. I just don’t get it, how are people on the DSP supposed to cover everyday costs when the average wage is so much higher?
I’ve been looking for work for nearly a decade with no luck. And now, with this crackdown on the DSP and the constant pressure to “spend or lose,” I’m seriously considering giving up on the NDIS. It feels like it’s doing more harm than good at this point. Is anyone else in the same boat?
Several participants are telling me very similar feelings. Especially with all the recent changes and the hoops they need to continuously jump through.
It is sad for a system that is suppost to ensure people with disabilities don’t miss out on quality of life.
I totally get where you’re coming from. I’ve been there too, I used to use a lot of supports, but it honestly started to drain me. The whole “spend it or lose it” thing is so stressful. On one hand, I’m grateful for the support I do get, but on the other, it’s a constant battle with my budget. I understand why you’re frustrated, though it’s like the system is set up to make things harder, not easier. The pressure to use services you don’t need just to keep the funding is really overwhelming. But I’m stuck too because I need this funding to stay afloat.
Hi @Sophia, I hear you. I’m with you- NDIS can be so hard to deal with, even when there is good to it. As far as support workers, from my knowledge, sometimes, there can be a number of things you use the same pool of funding for- the 3 main allied health I see personally, for example, all come from the same pool of funding. I wonder if there are other ways to use that funding? I do understand being given funding that isn’t helpful though- would it be any different if that funding did disappear? Or would it be ok?
In my experience, sometimes it can be about pushing back when things aren’t right, such as when reports don’t seem to be considered- personally, I’ve had other supports like my GP write support letters pointing out issues like cost and the inadequacy of relying on solely mainstream or public supports. I wonder if this might be an option for you, or worth looking into? It’s usually led to good outcomes for me, possibly because a GP may seem a bit more like an authority figure with their Dr title, backing up what you and other supports are saying- you’re off to a great start with those reports though! I know it sucks, but in my experience, often, the more letters of support you have, the better, especially when issues arise.
I’ve heard the extra disability-related expenses you’re talking about referred to as ‘the disability tax’- or if not that exact thing, similar. I wonder if you’ve heard of Elly Desmarchellier? She’s a great disabled activist who I’ve heard talk about things like disability tax a bit- some of what she says may resonate, or otherwise, there might be a few tips you can pick up from her experiences too.
I hope this helps, but please feel free to keep reaching out as needed. We’re here and with you.
I understand why you’re considering leaving the system. It’s hard enough dealing with everything else and this just adds another layer of stress. I wish there was more support for people with mental health conditions.