Lived Experience Forum

[Appleblossom]

Thank you @eth  Just a part of me.

I am good. Dont worry, just slipped out.

[eth]

s  @Appleblossom and @Doglover 

[Doglover]

@eth  xxx

[Appleblossom]

Yes I will be plan managed @eth but that does not come out of same bucket as funding for services. Its an extra.

LAC called yesterday and apparently I will be called on Monday by my new hastily appointed CoS.  Fingers Crossed.

Hey @Doglover 

I find it important to go Gently Bently with myself when going through a hard time.

Hugs

[Doglover]

Thanks for the "gently bentley" advice @Appleblossom . How do u do that? What does that look like for u?

[eth]

Hi @Appleblossom  I hope you get your call today and that it's all you hope for.  You can ask the new CoS questions about how they will help you, their experience, studies/qualifications, and you have the right to assert for what you need e.g. introductions to new support workers before you have to go out with them.  Best of luck with having found a good one.

[eth]

Had an hour with my plan manager yesterday morning and now understand a lot more clearly exactly what I can use different categories of funding for e.g. how many support worker hours per week, how many psychology appointments.  But still have some unanswered questions, partly because she ran out of time, partly because my coordinator of supports should be answering them not my plan manager.  

Then a 2 hr call with someone from the disability alliance - an organisation of peers with disabilities who are giving me a mentor that I don't have to pay for.  Really good discussion and an intake assessment.  Found a lot of common ground with her as she is vision impaired and I raised a legally blind child.  They are really good at helping me learn how to advocate for myself better, and explaining better ways for me to have choice and control with using my plan.  e.g. the conflict of interest with having my CoS also using SWs from her own organisation.  And I already know from things that have come up with her, that my CoS is more concerned about her company and their costs re insurance, superannuation etc and other clients of hers that have 'higher needs' than I do - it's just wrong.  1. The company finances are not my problem.  I'm the customer and they wouldn't have their jobs without customers.  2.  Just because my disability isn't visible and I have good days where I function and communicate (better than at other times)  I should not take less priority than others with different disability.  My rights should be equal.

Rave over for now, just wanted to update a bit here before more time passed.  Have been switching between brain active and virtually obsessive about NDIS stuff, and completely switched off about it all and taking time out from being online.

Thanks for support those who have and thanks for reading this far too.

[saturnzoon]

Hi @eth @Doglover @Appleblossom @Ali11 @greenpea 

I have been with the NDIS since 2015 ,when it first started for my son with his Aspergers/ADHD/Anxiety, so know quite a lot on how it works,

what you need and the spread of money for, Core supports and CB Capacity Building Support and Capital Support.

Core supports can be used across the board for CB support as well, but CB support can only be used under that category .

Capacity is for modifying the home or equipment that you use to help you every day.

I am still waiting to hear about my claim, about 2 weeks ago they rang me in regard to my new address and said they were working on it, so just a waiting game.

[Alone]

Hi @eth , thank you for posting this.  I am at the stage of interviewing CoS at the moment, and then will move onto getting a plan manager and supports after that.  

That's really interesting what you were saying about the conflict of interest.  The CoS that I interviewed the other day was pushing a bit to use the SW in her business, and also said they had a Plan Manager that they preferred to use.   When I asked her about using SW, or transport support from other companies she wasnt really able to answer my questions.

She asked to see my plan, but then didnt ask any questions about it or talk about it that I can remember.  

I'm interviewing another one on Tuesday.  It's hard to know what questions to ask.

That's great that you have a mentor.

[eth]

Good morning @saturnzoon  that explanation will probably help a lot of people so thanks.  I was already across those definitions, but needed to work out more specific details, e.g. specific line item numbers in the price guide that can be used for community engagement, daily living, transport training, and how many SW hours and psychology sessions I can cover etc - the different categories in the detail of my plan.  It has to last 2 years this time so I am wary of using too much in the first year and being short of funds by the end of the 2nd year.  Hope you hear back from them about your own application in the near future.  Glad to hear it seems to be working well for your son.

Your mention of having a new address sounds like there've been some positive changes since last we spoke.  Would love to hear more if you feel like sharing.  Have tagged you on A Long Rave.

Hi @Alone You have some rights that might be handy to know about. 

- You don't have to use SWs from your CoS's organisation.  The disability alliance I'm part of (peers with lengthy NDIS involvement) say it's a conflict of interest.  You can tell them you want to use other organisations, or HireUp which is well worth exploring - you can get freelance SWs there and they choose their own hours so are often more flexible.  Plus a bit cheaper than going with a larger organisation.

- You can totally choose who sees your plan. 

- I think it's actually unethical for the CoS to tell you which plan manager they want you to use.  Somewhere on the NDIS website is a list of service providers in different areas.  I'll see if I can find it and link it for you.

- It is her job to answer those questions.  If she can't you might be better off shopping around a bit more.  Endeavor Foundation is also worth looking at for advice such as good questions to ask potential providers.

- If you are plan managed you don't have to only use NDIS registered providers, there's more detail about that on the ndis website too.

- The peer mentor is through the local community disability alliance and is funded non-NDIS so are able to really give honest advice from experience, and even recommendations of services that have been successful - without telling you who to choose of course, usually suggest several options.

I don't know what area you're in so can't really give more specific contact details.

Hope the mud starts to settle and you can see a clear way forward and get your plan up and running asap.  Will look now for that list of service providers.