Anyone started with the NDIS?

[JasJac]

@eth I've been following your ndis journey and am really pleased that you were successful in your appeal!

regarding the peer worker, the information she shares needs to ensure that you feel safe with her, be appropriate and beneficial. There are key principles of peer work that she needs to abide by, were you able to bring up that her sharing wasn't helping? 

Is both the support staff and COS from the same organisation, I ask because the COS  may or may not be updated on individual support workers. 

[eth]

Hi @JasJac nice to meet you, and thanks.  

In this case the support worker is from the same org as the coordinator of supports, tho' I have others that aren't.  I did bring up the inappropriate over-sharing to the CoS and went so far as to say I don't want to go with that worker again.  The CoS said it was her role to follow that up and she would speak to the team leader about what had happened.  Yet to be seen if there are consequences for me from asserting myself.  Hard to do when it feels like the CoS has the power regarding finding appropriate support workers for me.  She frequently tells me the limits of the system, but I am meant to have 'choice and control' (a biggy thrown around by the NDIS a lot).  So far one out of 4 support workers is actually fitting the criteria I look for.  ie a mature woman, own vehicle, relevant education and training on top of lived experience.  And things always go really well with her.  She's from a different org. but was found by the CoS.  This sw totally agreed with all the issues I had from the way that booking happened.

Are you also having an NDIS experience in any way?  Thanks for following and I hope some of what I've shared is helpful to you or those you know.

[eth]

 I did get to the disability expo yesterday.  It was huge, something like 70 exhibitors, nearly all NDIS providers with a few things like mobility vehicles thrown in.  Quite overwhelming for the first 1/2 hour or so, so we went out for a coffee at the cafe outside and went through the program and identified about 10 that I actually wanted to see and focussed on finding just them when we went back in.  The most difficult moment for me was a guy from 'clickability' with really piercing eyes who stood too close to me while demonstrating his computer program.  Every time I took a step away he took a step closer.  I was so rattled I couldn't remember my sw's name (tho I've been with her a few times now) and had to click my fingers to get her attention.  Felt stupid about it afterwards but she was reassuring me that it was understandable. And apologized for being more than a couple of steps away.  It was loud and crowded, not an environment that I deal well with.

Found a couple more organizations that do travel support and one of them actually had a booklet with example prices in it - aghast!!!  So expensive.  Over $500 for one day and up to 5000 for a few days (with 1:1 support) where there is accommodation and meals included in the quote.  There has to be another way for me.  Even if the funds did come out of my NDIS budget, I can't justify that type of expense and it would eat too far into my budget for regular weekly support workers.  It really feels like quite a few of the newer services are more in it for the money than anything else and jumping on the NDIS bandwagon.

[JasJac]

@eth supported holidays definitely come across as expensive. I would love to go on one.

the cost is calculated from core supports support work rate and from the respite rate. it might be more affordable if you can get in at a group rate and only pay for the hours of support you need i.e. if you not need overnight support. Would you be open to being supported in a group?

[JasJac]

@eth yes the COS is supposed to help you maximise your choice and control, that means giving you experiences of sorting out differences with providers and finding your own support staff, with the support of COS if you want. I'm glad to hear you have a great sw, even if they are only 1 in 4. have you tried the online platforms for workers?

hope the finding sw journey goes much better from here on.

my ndis experience involved waiting around for the clinician i was seeing to complete my paperwork, i waited about a year and it never happened hahaha

[greenpea]

@eth My son's respite is closing down in January because of NDIS. Too expensive, not receiving enough money back from the NDIS etc. why am I not surprised.

[JasJac]

@greenpea that's disappoing that your son's respite is closing. have you found an alternate place or going to get in home respite?

[greenpea]

@JasJac Not yet he has got autism amongst other issues so he is very particular about where he goes (doesn't like change). I will have to have a look around and see what is on offer. It is just a shame as it was a good service and one that was needed.

[eth]

Hi @greenpea very sorry to hear about your son's respite place closing.  I really hope you are able to find a suitable replacement before then so he can try it out before the other one stops being available.  

Hi @JasJac you're right, I wouldn't need overnight support and basically only need transport to and from family or friends' homes once at the location, but it seems this is not the way they do things.  And I'm not up for going with a group of people I've never met before plus the cost even in a group of 5 is still exhorbitant.   I do use Hireup for one of my support workers that I only see occasionally.  So I could possibly book a sw at the destination if I could get myself there but I need help with airports and/or public transport to get there too.   Putting it in the too hard basket for the time being.  

Thanks for getting involved on this thread and your helpful suggestions to me and others.  Did you eventually get approved by NDIS?  It took me 18 months.

[JasJac]

@eth does a 1:1 worker work out cheaper if you only consider the support hours that you need? you may be able to take one with you to where you want to go except you'll have to do all the organising (rather than a supported holiday agency) and pay for the staff's expenses too or, sw can do travel training with you around the airport and getting there they can also help with organising the holiday. i really hope you'll be able to go on holiday with ndis 🙂 

NDIA evaluated my aplication without the supporting evidence. the supporting evidence was supposed to be completed by the health professional i was seeing. without the supporting evidence I didn't have the paperwork NDIA need to provide access.