Lived Experience Forum

[CheerBear]

I think the problem is I am not really funded for that gap @eth, but that's what the support coordinator is looking in to. As you said the support coordinator is also able to help me learn how to self-manage but with the break and their holidays it will be a while away. There is someone taking over while they're on leave but I was so jumbled up on the day that I have little idea what they said about accessing that support, how to go about it, what to do or what is happening now. There's probably not much I can do until the kids start back at school now anyway. I'll be able to focus again on it then.

They did give me a list of crisis numbers to use in the meantime, which I kind of laughed to myself at (as bad as that sounds) as my struggle and frustration is in wanting support so I don't get to that stage. It makes way more sense to me to try and prevent the need for crisis intervention than to cross fingers and hope for the best while dishing out numbers of services that maybe/maybe-not might help, but it is what it is.

Before I get too far in to my over-it-all rant, I'll stop and say that hopefully it will all come together properly sometime soon, but until then I am thankful I have a great GP and a new mental health care plan to use starting soon 🙂

[eth]

Good morning @CheerBear  I totally agree with you about the need to prevent getting to the crisis stage.  Very glad to hear you have a great GP and a new MHCP to tide you over.  I also understand you being over it all atm with all you've been dealing with recently.  If you have a number for the organisation the CoS is from, today would probably be the day to contact them about the relief person's details (so you can keep your options open) - not pressuring you at all, I just know that my CoS's office has their last day today until after new year.  I'd probably be shelving it for at least the next 2 weeks too if I was in your position.

Hoping the holidays are enjoyable for you and your kidlets.  

I'm having challenges with sorting out my remaining budget in a couple of ways.  My psychologist has only done 2 invoices for 7 and 8 sessions.  So now I'm into the 2nd of 2 categories that can be used to pay her.  CoS has been trying to communicate with her for several weeks now about doing 'behaviour management plan' report, funds for which have to come out of the same category, so until that's done I can't work out how many more sessions with her I can claim with ndis and when I'll need to have a new MHCP to roll over onto to see me through til the end of this year's NDIS plan (1st week of July).  I've explained all this to the psychologist a couple of times but she seems to only catch up with correspondence sporadically.  Frustrating.  And there's no guarantee I'll get funds for psychology in my next plan so I really want to use this year's plan to maximum possible benefit.

On top of that, CoS's organization, which I also have support workers from STILL hasn't invoiced correctly except for 3 sessions in September.  They are meant to get CoS fees directly from NDIS and invoice my plan manager for SW hours.  Sounds simple enough right?  They have stuffed it up at least a couple of times.  It's been since 11 July my plan started so it's nearly 6 months and they still haven't got it sorted.  So that means I also can't calculate how many sw hours I have left and therefor how many hours a week I can use.  I'm pretty sure I could be having at least a couple more hours a week.   I've heard that if you don't use all your funds in the year your plan goes for they are likely to reduce the funds in the subsequent year.

I thought once I had my plan life would be a lot simpler and more space to improve my community involvement and health and wellbeing but it's still causing anxiety because of the above.  Sounds like you're having a similar overall experience.  So I really hope things get sorted for both of us quickly in the new year so we can really make the most of our plans and exercise 'choice and control' like the NDIS continually states is the aim of having funds at all.

[CheerBear]

Big grrr with and for you @eth! The system can be so messy and so difficult to work out and work through! It's all a bit much sometimes 😕

Thanks for the reminder to contact the CoS office today. I'm doing as you said you would and shelving it for now. I tend to wipe out school holidays as far as things like this go but will hopefully be able to organise at least a couple of afternoons or days during the next 5-6 weeks for working on things like this.

I think we've both done really well this year going through this process/processes (I know you've been doing it longer than this year though). With a bit of luck, and likely some hard work, we'll have it all morr sorted again next year!

[tisme]

daughter was accepted first try , but I was rejected because they said arthritis and bipolar are not permanent or likely to be. so i kicked up a stink. to every politician /human rights /disability rights person i could think of. I asked all the politicians  " if such things are not permanent then obviously your government has found a cure and would u care to tell the world what that is . no one else seems to know..  So  I  was accepted into the ndis for arthritis and mental health ( what ever that means )  still waiting for our first planning meeting.  daughter has always been denied the help she needs because of her intelligence ( she is aspergers ) she was accepted for autism and eye sight ( she is blind in one eye) and as they put it " other disabilities.  ( she has deformed feet which is a much bigger problem than here eye sight.

[eth]

Good to hear you were eventually accepted @tisme and your daughter has funds too.

I had the same experience re bipolar being curable and I told the NDIS to let my Drs know what the cure is!  Ultimately (5th report written) my psychiatrist and psychologist convinced them that 'whilst continued treatment would "ameliorate" my symptoms, my disability is permanent and significant in terms of it's effect on my functionality' in all 5 categories that they talk about.

So the key now is for you to put appropriate supports in place that will help you work towards the goals that NDIS identified in your plan.  Are you self-managed, plan managed or agency managed?  Do you have a coordinator of supports funded in your package?  These things will make a difference to what you need to do.

I have both coordinator of supports and plan manager and so far I think it's the easiest way to go :-  freedom to choose supports NDIS registered or not at the same time as help to find such supports and with receiving and paying invoices.  If you're not happy with the set-up they have funded for you, you can do a 'review of a reviewable decision' as they call it.   There are others on this thread who are self-managing so if you are too let me know and I'll tag them.

I ended up having a disability advocate (free and available in every state) who also organised a legal aid solicitor and I and my 'informal supports' (family members) took NDIS all the way to the Administrative Appeals Tribunal (external review where the AAT has the power to override NDIS decisions).  NDIS conceded and accepted me 2 days before the hearing was scheduled!  I think they knew they'd lose and if they lost, my case would have set a legal precedent that other people could use.  Call me cynical.  

That was after doing an appeal, an internal review, both of which I was denied access.  The whole process took 1 1/2 years and it was a roller coaster of emotions all the way, sometimes a bloody nightmare.

If I can help you in any way ask me any questions you might have and I'll try to answer from my own experience or ask others and research what the NDIS says in response.

Don't give up - having support workers 3 days a week is changing my life - albeit in baby steps.

[tisme]

we are still waiting for our first planning meeting

[tisme]

i am looking at being plan managed, daughter and I intend to go into the meeting with a rep from Queensland Disability Network she has been great so far.  I couldnt organise lunch let alone anything else these days. i still wonder what to ask for for both daughter and I

[eth]

Ah, ok @tisme  Where you're at you might find page 56 and 57 of this thread really helpful.  The list of questions asked at planning meeting there is almost exactly what I was asked at my planning meeting.  Plus there's a reference to a booklet you can complete when preparing.  Mapping my world from the Endeavor Foundation (link on their website) is brilliant too.

Best of luck and good management to you.  I'm really glad to hear  you have support from an advocate.

Give NDIS some stick!!!

[tisme]

page 56 and 57?????????

[CheerBear]

Hi @tisme. 

You can find the list of questions in this post here (which is on page 57 of this thread). I'm very thankful @eth shared this as I found this was pretty much the same run through of questions in my planning meeting also, which I had at the end of November

Like eth, I found going through booklets like the one from Endeavour Foundation helpful. Also I was asked to complete "Booklet 2" from the NDIA. Though no-one looked at it during the meeting, it helped me as I had answers ready to their questions as well as three goals that I had already figured out. You can find booklet 2 here on the NDIS website (in the grey area on the page).

I found it very helpful to be well prepared for my meeting. Wishing you the best with it all.