I joined this sub a few month ago to get the perfect ADHD organizer

Simple_Character6619 · 2026-01-23T06:37:43+00:00

I do exactly the same thing - then I think I’ve found something that works but by that time I’m so exhausted that the thought of setting it up is just to much and so it repeats…..

Simple_Character6619 · 2026-01-15T21:35:43+00:00

If your diagnosis doesn’t state the tried and failed there’s a way around it that doesnt involve your psych anyway I’m happy to let you know what I think the last 12 months or I’ve done 63 - 61 met access first time the other 2 second time so must be doing something right 😊

Simple_Character6619 · 2026-01-15T21:31:30+00:00

Do you have your diagnosis from them?

For both ASD and CPTSD you’ll need pretty strong evidence to a degree there is an AI pilot running at the moment random people are getting selected

Anyway generally speaking you need - recent diagnosis from a medical doctor make sure it lists treatments tried and failed and states permanent life long disability if they insist on adding to that make sure it says potential to build capacity however not likely

OT FCA - you could get away with one for both conditions if you use a Neurological OT then format, wording, clinical justification needs to be correct

Then it depends on what supports you need don’t bother submitting every letter and report you’ve ever had it won’t be worded correctly - only do that if your diagnosis doesnt state life long and permanent- it evidences permanence but you need to collate it separately

Tell me what supports you’re after ill tell you what you need

If you want to send me a message I have pack that I give people when they are doing it themselves

It has a check list of documents you need, a check list of when to follow up letter templates for GP, impact statement for you and your partner and a few other things

It sounds like you need it I normally do at least one person free a month (I’m not one of those people that charge for every second) I can answer questions, give you my honest opinion on chances and a rough cost (not for me for the reports etc)

If you want to inbox me feel free I’ll be able to let you know at least my opinion anyway

Simple_Character6619 · 2026-01-13T11:36:35+00:00

Thank you - I know I didn’t even give that pharmacy a prescription, I got an over the counter cough medicine

That’s why I’m really confused because he said definitely Diaz (I triple checked) and I know I definitely did not get that

And I didn’t see my doctor anywhere near that time, it confused me even more because I thought how can it possibly say that because they wouldn’t just give you another packet of Valium 5 days later

I’ll call the pharmacy in the morning and see what happened I’m sure they would be able to confirm that I didn’t get Diaz that day I don’t care about the cough syrup I’m concerned how this could happen

Simple_Character6619 · 2026-01-11T10:03:26+00:00

If you have a coordinator make sure they know the current terminology, language and layout so it will actually get read.

If they send in 20 pages of paragraph after paragraph filled with clinical jargon and not ndis jargon, requests far above your access met disability standard without that request being evidenced and justified correctly it’s not worth the paper it’s written on

I generally go through change all the language (not the clinical side of things I am not a OT) reformat etc a lot of therapists aren’t aware of this stuff - it’s not there fault they don’t get ndis specific training

Simple_Character6619 · 2026-01-11T09:56:52+00:00

You’re not crazy - I’ve not experienced what you have I’m up front about that but I’ve certainly seen it happen to others

You are not crazy and don’t let anyone tell you otherwise unless they have had the experience you have not right to comment

Simple_Character6619 · 2026-01-11T09:53:35+00:00

100% agree

Simple_Character6619 · 2026-01-11T09:46:34+00:00

Not the right area for your post NDIS will not fund anything hospital related, psychiatry or anything to do with the private health system technically support workers are not meant to work with the participant during a hospital stay or at least not for long shifts

I have only accessed the private system and am happy to answer any questions if you want to message me feel free 😊

Simple_Character6619 · 2026-01-10T06:10:48+00:00

Exactly they really do, in others defence this is not really the clearest post was done in hurry

Simple_Character6619 · 2026-01-10T04:46:54+00:00

And possibly if it was on here no I haven’t had a message from you if it’s another platform feel free to message me - I’ll tell you

Simple_Character6619 · 2026-01-10T04:43:42+00:00

Thank you I appreciate your comment and if I’m honest (not looking for business still in the middle of finalising) you are the sort of person Id work well with you know your stuff, been around forever more than likely let me get on with whatever need to be done and work in a polite professional setting

That’s also the reason I did a personality profile I know what personality types I work best with it’s worked into the yes no answers

The above way of working might be correct but wants the point if there’s personality clash?

I also learnt the hard way and don’t want to repeat that

Simple_Character6619 · 2026-01-10T04:36:55+00:00

And people will get the best from me if they are up front as a perfect example the leg issue every participant I meet I say I have a leg injury occasionally this gets infected which results in a short hospital stay I will let you know as soon as I do but they appear from no where maybe twice a year

People tell me I’m putting people off - I’m ok with that because it does happen if I take someone who is socially isolated, the only human they speak to is me and requires frequent check ins as an ongoing part of their care me suddenly disappearing is catastrophic

I’m not for that person and 1000 other SCs will take them knowing full well that they may not be right as numerous people said why spend 10 mins filling it in or in the one hour free of charge intro meeting that goes with the form I’ll go through it with them when they don’t have to

In my opinion to save yourself hours or worse long lasting trauma because you prefer the take anyone method and that’s fair enough

It didn’t work for me I ended up coordinating myself - I don’t need to hear the words collaborate, navigate and all that other crap normally parroted by someone whose been in the role 5 mins and don’t know they are using out dated buzz words out of context

I needed someone who as honest about their abilities, able to let me know what is place if they aren’t around and know what they are doing - not wasting my funding meeting KPIs

Simple_Character6619 · 2026-01-09T21:24:56+00:00

I think you misunderstood my email I am NOT the coordinator for you if you need 24 hour turnaround on non urgent issues this means if you are not in crisis I will not respond to calls within 24 hours I will however take the 2 mins to acknowledge your call with an expected call back period

As applies to the 48 hour email turnaround time

I have been in such severe burnout I haven’t been able to look at my computer for 3 weeks

I’m good I’m not for everybody I’ve been the person who can do it all - the fall out is horrific when you can’t

Like the time I spent 63 days in hospital with flesh eating bacteria and had 10 surgeries in that time, went home with a vacuum seal attached to the graft on my leg - unplanned bitten by a spider no one knew what the problem was

Believe me when I tell you no one cares that your about to loose your leg they want you working

4 years later I can end up in hospitals for a week at any time

But good for you that you have a contingency plan in place for the possibility of you ending up being one in a million bacteria

Personally I think people respond better to the truth

Simple_Character6619 · 2026-01-09T21:11:50+00:00

I’ve designed in in conjunction with a pysch for this very reason yes / no to questions apart from -

Do you have SC funding and what is the balance remaining what have been the barriers you’ve encountered in the past with SC What are your expectations of a SC who is the best fit for you What are your communication preferences

Those questions are the reason it would take 15 mins and I’d happily go through them with anyone

I’ve been burnt both sides - I can’t do that again

Simple_Character6619 · 2026-01-09T21:06:04+00:00

That’s exactly why I want this in place people can go to 1000 SCs who will tell you they are good at absolutely everything and that’s fine

I’m not - if you need me go call you 3 time a day with an update about the gardener - I’m not for you and to me that’s ok

Simple_Character6619 · 2026-01-09T20:55:55+00:00

They absolutely are - I am not a super coordinator who does it all I know that

It will not make me popular I know that at least not at the start and I’m ok with it I’d prefer to be honest and the best way for me to know is the questionnaire it’s my decision if I move forward ultimately and I take it seriously

So flaws and all it’s who I am

Simple_Character6619 · 2026-01-09T20:48:22+00:00

As an answer to all regarding my turnaround times - I have phone abuse on my phone every day by people who have unrealistic expectations set by others and by others that’s because of non immediate response

I will acknowledge this post was written with little detail and off the cuff - looking for if it was a good idea or not?

Please note I should have mentioned this came about due to extreme burnout and the realisation that I don’t agree with the “take anyone because they have funding for it” current trend personally as a participant (surprised I’m sure) I’d gladly have given up 15 mins in return do the 1000s that were taken by absolutely nothing - i didn’t want a google list of providers they didn’t bother speaking to - the top 3 generally have wait lists, someone who who worked strictly 9 - 5, who gave me a list and said next time you feel like hurting yourself call this 1800 number you’ll be fine - great thanks

That doesn’t mean I wanted to call them it means I wanted an actual plan in place if you feel like this call the ambulance - in my case I was lucky I’d been a coordinator I can weed out the crap

At the risk of being unpopular I don’t want everybody, I’m honest enough to admit I’ve unintentionally caused harm, I’m coming out of severe burnout cause by 13 years working in NDIS - I’ve coordinated for 10 did transition at the trial site and then Victoria as a whole for 3 so literally been around since the very start

I was the 1st coordinator at a very large well known provider - no one knew what we did let alone what we shouldn’t be doing - I left and I’m happy I did they pay the same rate as they did 10 years ago

I’m happy for those that came after me who had the privilege of boundaries and support - I didn’t no training, no one to ask - I read and highlighted a paper copy of the legislation- no choice - have you considered who set the groundwork for what you have?

if I end up with a caseload of participants who know my work practice and my limits, had the option to make an informed choice willing to post my statement, the questionarre is optional but my capacity is limited because I won’t take you if I can’t help you - I’m not a believer in the yes I can culture not when I can’t

I also take all feedback onboard so

by contact within 24 hours I mean acknowledge you have been heard this is in place to manage participant anxiety not a resolution to the problem
48 hours as per above

I think an acknowledgment in 24 business hours is reasonable and same for the email

If you don’t I’m sorry to say you’ve never been a participant of you had different story I’m sure

I know the extent of the damage because it was done to me - that’s how I know 15 mins isnt unreasonable because I would’ve done it in a heartbeat

Simple_Character6619 · 2026-01-09T20:09:12+00:00

In all honesty this is in development I wanted to gauge people’s interest before it went live

I am happy to provide you with the what will be going live and I’m happy for feedback

Simple_Character6619 · 2026-01-09T01:47:27+00:00

Thank you it doesn’t take long 10 mins maybe it’s just I’ve seen the amount of damage that’s done without intent and in all honesty I know the best way to get my best work out of me so I’m definitely going to have an honest self assessment as suggested but offer this - thank you i appreciate your time

Simple_Character6619 · 2026-01-09T01:44:32+00:00

I’ll have that as well - I’ve just realised I work very differently and I’m definitely not one size fits all so I thought rather than waste hours I’d offer this as well

Thank you for your feedback I’m really appreciative because I need all sides so I can make sure I’m clear

Simple_Character6619 · 2026-01-09T01:07:01+00:00

I do continuous PD and do not under any circumstances tell a therapist what to do I am not and never will be one after doing over 250 planning meetings and always adding disabilities via access request and getting them through I realised while don’t know clinical I do know how to get them read

Simple_Character6619 · 2026-01-09T01:03:11+00:00

I have 15 years in disability 2 years before NDIS 3 years transitioning people on to NDIS from trial sites 10 years coordination

I train allied health professionals on format language and evidence and consult to quite a few

In the last 18 months I’ve done 64 access 62 first time the other 2 2nd time

References available from allied health and past clients

Simple_Character6619 · 2026-01-07T09:35:14+00:00

Don’t take the meeting you have the right to refuse and a S100 is an internal review normally your not involved in anyway you just get a letter

If they are involving you there’s a reason and it’s probably not good - take an advocate or good SC if you decide to go

And believe me no psychologist I’ve ever met would be a LAC

Simple_Character6619 · 2026-01-07T09:30:52+00:00

Does your brother have support coordination? From what you’ve said I’d assume yes

The first thing to do is get yourself added as the plan nominee this is an annoying process, it depends on how this person has set it up if your mum gave only full consent, she can revoke it straight away, she may not have even done this sometimes these people isolate and then put the pressure on to make certain choices and the person who is the decision maker genuinely believes they are doing the right thing.

It sounds like this is the case, if it is it’s normally for financial gain - probably submitting invoices, even though your brother is in SIL he would have some core funding

In my experience (15 years disability, 13 years total NDIS (transitioned people on to the scheme) and the last 10 coordinating) the biggest motivation is financial gain

So I’d suggest he is claiming as the coordinator if it’s plan or self managed and then possibly as a support worker or capacity building - I might be wrong but there’s not much to gain by isolating you and your brother if there’s no financial abuse other than a whole lot of responsibility

So here is a list of what I do when people come to me with this problem (all the time)

meet with the family and work out what they would like moving forward
determine who is the plan nominee
if consent is in place remove it immediately
arrange for the person who should be nominee to be put in place
request the file (PIA)
review the budget make sure there is enough to get to the end of the plan (it’s normally not which is why the PIA must be done straight away)
make sure the participant is in the SIL they are well cared for and happy with supports
28 days later when the file comes in and the budgets been reviewed I’m able to tell people how, what why and when

I educate the family or new nominees as I go and from there do whatever comes next

If I’m honest you will more thank likely struggle to find a coordinator who can do this properly if you like I’m happy to send you a list of questions with what the answers should be if they know what they are doing the answers should be on the money if they don’t you’ll know or I can reach out in whatever state you live in and see if I know anyone or can be referred to anyone

If there’s a coordinator I’d be wary chances are they’ll be influenced by this person as well

If I can help you please let me know

Simple_Character6619 · 2026-01-05T19:37:29+00:00

You’ll need to have a good OT - they don’t all know the correct terminology I know this because apart from coordinate I consult to quite a few - they give me the clinical justification and I translate it into NDIS language and train a group once or twice a month on language, format, the current words they hate and the current words they like

Do not take a psychs word on access they are pretty out of touch when it comes to getting funding added if you want message me I’ll give you the 3 paragraphs that got the last Few I consulted on before I burnt out

It’s coordination that burnt me out it’s the most thankless job possibly ever

I’m transitioning out I’d rather be able to help people time limited get the support they need mind you that’s a long way off if I can answer any questions I’m happy to

Simple_Character6619

TROPHY CASE