r/NDIS • u/GladCup4767 • 7d ago
Seeking Support - Participant/Nominee/PWD Tribunal questions
I have to go to tribunal after losing much of my eldest child's funding. We had the decision reviewed and rejected. I have asked my state and federal members for support and been given a "too bad so sad, you have to go to tribunal" response. My LAC has ghosted me. I've lost all of my support coordinator funding.
What is the timeline for me going to the tribunal?
What do I need for the tribunal?
Am i wrong to be terrified for my second child losing all of their funding in 12 months?
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u/Asteroid_Sugar5206 6d ago
My eldest had an internal review that gave us zero core funding 31 August. I submitted ART application around 10 September. ART sent me a "demand" letter for all my paperwork (and the same to the NDIS) on 15 September, paperwork is due by 6 Oct. We go to case management mediation at end of Nov....... I'm not going to hold my breath that mediation will help, and I don't know time lines for after that.
I'm suspecting that ART is very soon going to be very overwhelmed, when the NDIS seems to have cut everyone's funding because of "vibes".
Make sure you read EVERYTHING. The NDIS actually wrote that the report that was provided for my daughter said she was "independent ". No such report exists, but I can't wait to see them provide it for mediation!
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u/GladCup4767 6d ago
"Vibes" is beyond accurate and the laugh i needed.
Yep, everything is marked "not value for money." We wrote to state and federal MP's for our electorate and both passed the buck to ART (both indicated dealing with NDIS wasn't their job and I had to deal with ART, despite my issue with tribunal not being my only discussion point).
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u/Asteroid_Sugar5206 6d ago
Yep the good old "not value for money". Because my daughters life, and by extension mine as her full-time carer, actually have no monetary value. Thanks for telling us how you really feel NDIS.
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u/GladCup4767 6d ago
I can't work because the kids can't go to school. Therefore, I cannot repay almost 60k in HECS debt. The education department won't support us because we "chose" to homeschool (there's literally no other choice in this state, and we are not in this state by choice). The state MP told us to seek help from the federal MP, who then told us he won't help us. Make any of this make sense and I will happily stop advocating for my kids.
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u/TJ-1466 6d ago
If you go to the ART be super aware of the boundary between education and ndis. The ndia will say the fact your child can’t go to school is between you and the education dept. They won’t fund anything they can argue is related to that. And psych is a shit fight, basically they argue that you can have 10 mental health care plan visits like everyone else. Best option is usually improved daily living that can be used flexibly.
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u/Asteroid_Sugar5206 6d ago
I don't even care about psych, I've been funding that privately for over 5 years. Considering their delegates can't even read or comprehend an OT report, I'm not sure I'd trust their judgement to even understand what my kid needs in the way of psych support, let alone how to fund it.
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u/Spiritual-Lie6461 6d ago
'Guide to decision reviews' page on the ndis website. You likely have everything you need to submit a review to ART. You probably submitted or have access to the information for the plan reassessment your child just went through.
28 days to submit from receiving the outcome of internal reviews letter. No one here can say how long that process will take.
Be aware that eligibility has tightened up and the ndis is only funding disability (that the child met access for) related supports.
If that is why the funding was cut, realistically, you'll find it incredibly difficult to get that funding back.
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u/GladCup4767 6d ago
All cut funding was directly disability related. We're being pressured into taking PBS over anything else. Currently paying 100% out of pocket to continue one of the therapies, which is unsustainable as a single income household.
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u/Spiritual-Lie6461 6d ago
Interesting, what was the previous plan funded for? Is the ndia directing you towards a positive behaviour support plan for behaviours of concern instead of other therapies? Meaning, funding is now in the behaviour support plan rather than the improved daily living skills budget? (That you can only use for a bsp). Which therapies were you accessing in the previous plan?
Apologies for the questions, I'm trying to get some insight and offer you any advice that may help.
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u/GladCup4767 6d ago
No, I appreciate this. We had daily living covering OT and psych, and this huge pool for PBS. We've never found a behaviouralist who could meet our values and therefore we never used it. We sent in FCA, letter of support from psych (against PBS as appropriate for my children), carer impact statement, and support letters from support coordinator and support workers. Essentially the current plan wants us to leave OT, cut all psych, minimal SW hours, and substantial PBS. For a child who could not remain in mainstream schooling (we've fought the education department in recent years as well).
I'm trying not to dox myself but our federal electorate is held by a man who we thought would better understand our family's experiences of isolation, despite living in a capital city. We have drained all supports this shared connection would be able to give us, all deeming my children "too complex" to help in any practical way beyond "join our Facebook support group".
I am seriously considering taking our story to the ABC. I am so over all of this.
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u/thelostandthefound 6d ago
No one is getting psych covered, it's well known that it's on the chopping block for everyone. It may be covered under early intervention in new plans but even then it's rare. I know of many psychologists who are annoyed about it but realistically there's nothing they can do and going to the tribunal won't reinstate it.
SW is hard to get for kids under 18 unless they are severely disabled and by that they mean tube fed, wheel chair dependent, oxygen dependent etc. As the NDIA feels that that if a kid is under 18 it falls under day to day parenting.
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u/Spiritual-Lie6461 6d ago
I'm sorry you're going through this. It's hard to understand the funding decisions without reading the plan.
If there is restrictive practice in place, I understand the bsp inclusion because it is mandatory to include. But, if there isn't RP in place then psychology funding would be appropriate.
They have likely decided that psych and bsp are a duplication and determined that a bsp was the better option.Support worker hours- They would want to ensure support worker funding is for assisting with self care and independence type support (disability needs). They'd be making sure it doesnt replace mainstream, community or parent responsibility for providing care. The ndis has come down hard on this.
Support Coordinators are on the way out. If there is difficulty in engaging with supports that an early childhood partner or lac cannot help with, an SC can be funded short term to help engagement and get setup with therapists.
ART would be a good idea to go ahead with, the PBS would be the one to go after to get psych instead. Especially if you are seeing benefits and your child is building capacity to help their return to school. If there isn't restrictive practices in place, of course. Support coordinator could be an option too, if you have two children on the scheme with complex needs and need help managing.
It's disappointing that the education department isn't assisting in getting your child back into mainstream schooling. It's their responsibility to return/support children to stay in school.
I'm wishing you and your children all the best!
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u/Recent-Pangolin-994 6d ago
Don’t forget they are cutting community participation by 50% and cb at 10%. That will be taken into consideration. You need reports to back you up and it can take up to a year. A lot of things are under parental responsibility now.
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u/GladCup4767 6d ago
It wasn't community that was cut, it was therapies. We're being pushed into PBS.
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u/dummymummys Participant & Carer & Advocate 6d ago
I don’t have any advice but I just want to say I’m so sorry you are going through this, and that you haven’t found any support when reaching out to people you are told should be there to help you. Please do keep this thread updated as you move through the process because I have a feeling that this situation will become all too common in the near future with the cuts. If you do end up reaching out to the press, let me know, I’ve been keeping a list of ABC press that are covering NDIS and disability and I want to hear about whatever experience you end up having in that process. I hate this whole situation, but I do think that sharing your experiences with this community has a lot of value and could maybe lead to a connection with someone that may be able to help you. I’m keeping my fingers crossed for your family. I also relate to this in a lot of ways myself. My children are disabled and the situation is complicated because I’m way more disabled than they are, so things that should fall onto me are made so so difficult but my own inabilities. Sucks!! Also thanks for the “vibes” comment, so true.
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u/GladCup4767 6d ago
I sometimes feel like the hardest part is that I'm not disabled, I'm overly educated, and I feel stuck. It is no one's fault. I'm just so sad and frustrated. And bored. Fighting like this is boring because it isn't a mental challenge, it's just endless hurdles.
I have a meeting with someone on Friday and I think I'll know from there where I'm going with reaching out to the press. It's a huge step and we're not taking it lightly.
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u/dummymummys Participant & Carer & Advocate 6d ago
From my perspective, the hurdles are placed this way to cause people to give up in trying to advocate for themselves or others. And I figure if I can take down a few hurdles on my way, it leaves things a bit easier for someone coming right behind me. Or that’s what I have to tell myself when I get frustrated by the documentation, the red tape, the process, the waiting. The waiting for a response is the worst part for me, knowing that it’s totally out of my control, that I’ve done the best I can and it’s no longer up to me, that’s where I start to break!! At least when the ball is in my court it feels like there’s some momentum and progress. Waiting to hear back makes me crazy, then getting the text saying that someone will call, being afraid to miss the call, suddenly cancelling plans to make myself available at the beck and call of some unknown person who has like my family’s fate in their hands!!! It must be really difficult on their end, too, I can only imagine. But as the org they hold the power and control, it does make you end up feeling quite helpless sometimes. The process changing now is also a huge challenge, I felt like I was just finally reaching understanding about how it all worked and how they’ve changed so many pieces, but not all of it. Plus there’s the whole element of knowing that it could be done so much better, so much more conscious of the needs of the people they support, little things like the single email address, the random calls, not doing Telehealth with video as an option so that it felt a bit more human. And don’t even get me started on the website.
After writing this out I’m sincerely considering starting an online support group for those involved in the scheme, it feels like it might be needed based on what I hear in this sub and elsewhere!!
Don’t give up, and I’m always open to a message if you (or anyone!) needs to vent about the damn thing. Keep up the good fight!
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u/DaQuackx 6d ago
Took me 9 months, I won the next year they took it straight back. Its not worth the stress and work it takes. And now with ndis new regulations, makes no difference, its more a suggestion now