Lived Experience Forum

[eth]

I finally got my admin caught up re ndis supports received, monthly budget reports printed etc this afternoon.  Hadn't done it since mid November.   Now I can see what I can't make sense of and where I need help.  Hoping to get clarity by seeing coordinator of supports this week.  Might try to get the plan manager to be here at the same time.  The cos's organisation still isn't invoicing pm for support worker hours and there's a couple of other glitches happening - I shouldn't really have to sort that stuff myself, that's why I have cos and pm.  Frustrating.

[eth]

At last the invoice I've been chasing for one organisation's support worker hours received has been sent.  So when I see the CoS we should be able to work out what support worker hours I have left and what my weekly spend can be.  Also my psychologist did the behaviour management report that's taken 2 months for CoS and psychologist to communicate with each other about what was needed.  So I should be able to work out how many more sessions I can have with her too before I need a mental health care plan to cover the gap til my plan ends.  Seriously hoping NDIS will fund her again when my plan renews in early July.

[eth]

Spent 2 hours with my coordinator of supports and sorted out a bunch of things including how many more psychology ap'ts NDIS will cover and requesting more support worker hours to do a few new regular and one off activities.   Also had a phone call with my plan manager and she confirmed I can claim the cost of some of my activities, including the tai chi, as they fit in with my goals.

I'm half way through my first plan and have only used just over 1/4 of my funds.  Time to get more activities happening.

[CheerBear]

Hi @eth and anyone who might be able to help with an NDIS question.

I sent my first payment request for a support coordination meeting, through a few days ago (after a frustrating, hair pulling kind of couple of hours trying to work out how as no-one returned my calls to support me to do so despite being funded for support for that and told they would help me- grrr!). Quite a bit more than the amount I requested which was the amount on the invoice I attached, was transferred to me though.

I am trying to find a break down of payment or something that can show me why I received the money I did but I can't seem to find anything about it at all. Anyone know where I might be able to look?

[eth]

@CheerBear  are you self-managing after all?  Sounds like you need to speak to someone at NDIS to get an explanation of the amount sent.  But here's my theory --- the amount in your plan for CoS is a set amount for the year.  It should be a set-up fee plus an amount for around 1 hour a week for the year.   Perhaps they have sent the whole allocation in one lump sum.  (Me being plan managed, NDIS pays the CoS directly and it's a flat fee).  I know that NDIS have a price list published on their website and will look now so I can give you a link for it.  If you can find the 'line item number' that the CoS has invoiced for (maybe ask the CoS) you might be able to work out what exactly NDIS has calculated it on.   https://www.ndis.gov.au/medias/documents/price-guide-nsw-201819-pdf/201819-Price-Guide-VIC-NSW-QLD-T...

but heads up it's a very long list.  I'll see if I can find CoS section  --- it's explained on page 45  --- and the line item numbers for CoS are on page 57.

Having said all that, I think the first thing to do is ask the CoS to work this all out for you.  That's part of their job.   Otherwise did you have a LAC do your planning meeting?  They should be able to answer your question too.  And in your plan there should be listed a contact person at NDIS who is overseeing your plan.

Hoping things become clearer for you very soon and that this information is helpful.

Cheers CheerBear xxx

[eth]

Another thought @CheerBear  you might be able to see more detail about what is allocated for the CoS category and how much has been spent if you can go on the NDIS portal on the myGov website.

[CheerBear]

You rock @eth thank you!

I'm self managed but I asked for that only if I was also allocated funding for support to work all of this stuff out, keep records, find and engage with services etc. which is yet to happen. I was allocated around 26 hours of support coordination for that which probably isn't enough so that would be part of a plan review (on top of the annoying giant chunk of useless funding sitting in one category and not enough in the other).

I tried finding more info about the mysterious money that was deposited in my account today and ended up calling the NDIA as so far the support coordination has been less than helpful. It was back payment for transport allowance, which was found only after I suggested they look to see whether maybe it was that. Apparently there is no other way to see a break down of money deposited into an account.

Side note funny - whoever I spoke to from the 1800 line sent an email to finance department and within half an hour I had an email back. I found it interesting how quickly they worked and communicated when they were potentially owed money 😏

At least it is sorted now. Thanks heaps for your help x

[eth]

That's excellent news @CheerBear.  I hadn't even thought of it possibly being for transport as I didn't know you need help with doing that.  The great thing about transport allowance is that you don't get audited for it like you will for everything else being self managed.

  So that also means you still have the funds for CoS I take it.  26 hours is only 1 hr every 2 weeks - doesn't sound like much, but my CoS said it makes sense to use more when setting everything up and I'll need less as time passes.  I agree with this.  

Do you know which parts of your plan are for capacity building and which are for core supports?  My plan manager told me you can move core supports between core categories but capacity building categories are fixed.   So if that extra chunk is in a core support category it can be transferred into another core support category.

It really does sound like your CoS needs a swift kick up the jacksie and to pull their finger out and get busy for you.   I believe that if it's really not working with them you are entitled to ask NDIS to allocate someone else, preferably from a different organisation.  I think you've already had your plan for a couple of months so that's what I reckon I'd be doing.  I'm not sure what state you're in but I'm in NSW and have a good one from Flourish.

Being self managed you might also be able to shop around and find one for yourself that communicates well and timely, and then tell NDIS that's who you want.  Never forget you are the customer and they should act like they want to give you good service for your money.

Somewhere on the NDIS website is a list of NDIS registered providers and what services they provide in each state.  But as far as I know if you're self managed you can also use providers who aren't NDIS registered.  They just need an ABN.

https://www.ndis.gov.au/document/finding-and-engaging-providers/find-registered-service-providers

[CheerBear]

Thanks again @eth 🙂

One of the reasons I went self managed was because I could use providers who aren't registered but I need to know how to do that and I need funding in the right category to do so. Right now I have a little over 1/6th of my plan where I need it (not that I can use it because I have no idea how yet!) which is in capacity building under support coordination and improved daily living. That is going to be very helpful. The rest in core support which can be used flexibly. The core support is way more than I need and for the things I don't really need, or at least don't need as much of as they have me funded for. As an example I have been told I can get someone to come and do things like housework which is about the only thing I actually do manage to do (most of the time). As tempting as it is to have someone clean the house for me it would take something from me that gives me a sense that I'm not as completely useless as I feel I am sometimes. But I haven't been funded for a mental health worker. It makes no sense at all to me 😔 Nowhere in the documentation I provided or in the planning meeting or at any point along the way did anything say I needed help with housework. It did say multiple times and very clearly that mental health support (a mental health worker etc.) is a major factor in me being able to keep going, to stop the need for 'invasive intervention', and to work at my goals and live a normal kind of life. I need a mental health worker at minimum (and soon) as I'm now feeling the impact of being stuck in a gap between how the system was and how it now is. I'm trying hard not to let this funk I'm in go too long or to get bigger, but being down on the support that is proven to help me do that makes it difficult.

As far as the support coordinator goes, it took a couple of weeks after my plan was approved to get some support coordination and then the coordinator went on leave. There were things that were supposed to happen by the person filling in for her (like a service agreement with my psych) that didn't happen and that person was less than helpful when I called to ask for support to pay an invoice that apparently was overdue but I hadn't received. I really suck at dealing with stress and I really, really, really suck at working with new people in confusing systems involving processes that (in my opinion and from my experience) smash and crash and destroy the people who need them to work better than they do. I swear I can feel my brain actually exploding and I lose my ability to make sense of information, to remember things, to communicate my needs/communicate at all etc. when I'm in that kind of situation. I can think only of how to try and control myself and/or escape the situation. I shut up and shut down worrying that if I open my mouth I might turn into an exploding ball of lava. Right now I feel like I need support to be able to deal with the whole support coordination thing too, which is utterly ridiculous 😏.

Now that I've had that giant vent I will add that I've just been pointed in a direction that may help me fill the gap for now, though I'm not going to hold my breath as I have my doubts. I'll try a couple of places and if nothing else it will mean I'll at least feel like I'm doing something to help myself which might make a difference to how I'm feeling at the moment. I also meet with the support coordinator again in a couple of weeks and will work on trying to find someone to come along to that to help with my potentially explosive lava brain too. If that meeting doesn't go well, I'll try somewhere else.

Thanks if you read that long vent, though I don't expect anyone to sit through vents like that. The whole thing is doing my head in again and it helps to get it out a bit.

[eth]

I feel for you so much right now @CheerBear.  I'm glad you were able to put into words how this whole thing is affecting you and hope it helps you take a small step back from it all and observe what's going on and break it down.    None of it is your fault.  This system seems designed to break people at times, the very people it's meant to help.  

Not sure if I've told you before but if you have a plan manager you can also use service providers that aren't NDIS registered (in my case that's the psychologist weekly).  If you had a plan manager so much of what's getting on top of you could be taken care of by them.  I'm just wondering if it would be a good idea to get one - talk to NDIS about how to do so but I think it involves requesting a review of your plan so you can get plan management included.

Great idea about getting a support person (informal i.e. friend or family member) to come to meetings with you.  That was a great help for me.  If no-one is able to do it you could request an advocate through Disability Advocates which are free and in every state (google them for where you are).  I had one and they were a huge help and also came to meetings with me (as did my sil and sometimes my bro as well).  It really p's me off that a lot of people with 'psychosocial' disability (MH challenges) are exactly the people who are unable to advocate for themselves, especially when over-whelmed by the intricacies of NDIS, and frequently isolated in a way that means there is no-one to support and advocate for them.

Did you have PIR or someone help you when you were applying?  Maybe a good talk with them would be helpful too.

Re funding for housework etc - I have it too and don't use it.  I think it's in there because of some of the details of the functional effects of my disability - we presented what I'm like when my worst days happen, not what I can do when at my best.    But as it's in core funding it can be transferred to another category within core funding and used for e.g. community involvement or enhanced health and well-being.

Do you have psychology funded?  I think they won't fund a mental health worker as well as they likely deem it to be a service available through 'mainstream and allied' mental health (public health or medicare rebatable). Maybe.   What do you want that person to be doing with you?  There may be another way they could claim from your plan e.g. improved relationships, behaviour management or something like that.  I specified to my CoS that I wanted SWs who were mental health trained, not just peers with lived experience.  And she found them.  And they are helping work out and implement strategies to work towards my goals.

I'm just throwing ideas around here in the hope something is possible out of all I've suggested.  Again, I'm feeling it all with you and hoping you are managing otherwise, family needs etc.  Take good care xx