24-02-2021 09:31 AM
Re: A long rave
Hi @Faith-and-Hope I really hope your daughter's NDIS plan goes through smoothly and S2bx behaves himself in the negotiation phase.
@Mazarita dear I'm so happy you've been approved! It really is an achievement given all the hoops they make us go through. Were you able to submit reports and letters of support from people who work with you or did they do an independent assessment (as they call it, but it's done by a company that has tendered for the job and is effectively employed by them). I am already anxious about the possibility of the latter happening to me. My current plan expires the first week of July. I had a one year plan initially then a 2 year plan the 2nd time. How long is yours for? Hoping you know that you can choose where your planning meeting takes place - you can have it face to face (in person) at either their office or your home; you don't have to have it on the phone. A lot of people say face to face is much better than over the phone. You are also allowed to have a support person there with you - I had 2 (bro and sil the first time and sil and my coordinator of supports (CoS) the 2nd time). There is a possibility of my plan being rolled over (the same as the current one with no need for planning meeting) and I think that's the best I can hope for. I would suggest going for a CoS rather than a Recovery Coach or both if possible, if you are offered a choice. Also wondering how your plan will be managed? For me, having a plan manager has worked really well. The other two options are agency managed (NDIS does it and controls everything) or self managed (which I'm def not up for) . Ask me if you want to know more about what the differences are. I'm rambling again but just so happy for you that you will be able to have increased supports, social and community participation and hopefully the private yoga tuition too.
Sorry to hear that you were unable to continue the group yoga but I understand the pressure you felt to attend and admire the way your support person has handled it. Not entirely sure but I think if it's a group activity it can come out of core social and community participation but if it is solo it counts as physical therapy and comes out of capacity building funds. Hope you'll soon have a person on board who can sort this type of stuff out for you.
One thing that really helped me (and I've done it again since to as it gets updated from time to time) was to read right through the NDIS Price Guide (it is a big document, you can find it on their webpage) to get an idea of just what it's possible to ask for. e.g. I found a deeply buried item called Innovative Social and Community Participation which I was able to use for my MH OT driving lessons.
Getting set up with what you need/want to use your funds for is a huge learning curve that's for sure.
Sorry to hear your gut pain has been so much worse. I think it does make sense that being distressed can exacerbate it. Hopefully it's settling by now.
Re poetry sharing - I too have shared some very soul baring pieces in live readings, but usually they are the ones that get the most amazing responses. And you're right that sometimes the less words the more powerful a piece can be. I really hope your performance feels good once you're doing it and that you get a wonderful response. You're also right about the ways it benefits us that you mentioned. I'm nearly always write in the first person and have been challenged by a couple of encouraging people to have a go at 2nd or 3rd person more often. Had a go at that on the weekend and I really felt a shift in what came out when I changed the narrator.
So I've raved again!! Very much look forward to hearing from you when you're up to it. xoxo
24-02-2021 09:32 AM
Re: A long rave
Good Morning @eth I was out walking , so that's something. Hadf tooth out yest so thats bothering me well as much as I let it I guess. Hope things okay for you. Going to drs in around 3 hrs ish to report on my efforts from last week lol, cant really care anymore, dont know why let it get to me. Any hoo
24-02-2021 09:52 AM
Re: A long rave
Thanks @eth ..... I appreciate that.
I am really proud of you and @Mazarita though, in achieving NDIS support. It's a given for D2 (once my application finally got through ...... my first round of response mysteriously disappeared in the mail system between their office and our post box, three months before s2bx left, and he was handling the mail ..... ??!!), but yours was something you had to fight hard for, and lay out your areas of
vulnerability and struggle for. That is hugely brave, and a very difficult thing for anyone to do. I have raised this with S2, but he is not in a place where he can take that on at this point in time. He has considered it though, and will continue to do so. There is something of a comfort knowing that the prospect is there.
That procedure was beyond D2's understanding, but she is bright enough to recognise her younger siblings "overtaking" her with skill development, life opportunities, independence, etc, which is part of her struggle. She has also known for a long time that her physical features are "different" and cause people to respond to her in a way that both creates and removes societal boundaries in an instant, in different directions. I think NDIS has arrived at the right time for her, and as you said, I hope s2bx behaves himself as we finalise her plan.
His last comment was that he was "relieved I am finally doing something ito support our daughter" 🙄😡 ..... after initially opposing the idea 🙄😡 ..... so hopefully he will look like a right narna if he does try to mess things up now.
Meantime I am loving hearing how much it has helped you, and the changes it has enabled in your life ❣️
24-02-2021 12:33 PM
Re: A long rave
Sorry I didn't hear about this earlier but I am happy to hear that you are approved on the NDIS Thats good news. Its tough. My sister went through that experience recently.
Take care friend @Mazarita
24-02-2021 01:19 PM
Re: A long rave
Good News @Mazarita
It needs management, but your needs are central to the tenet of NDIS entitlement. A really weird concept for me to get my head around. It should make life better.
On you for hanging in there, but what else can we do. Hearing you about the shifting stances of problematic spouses. Good to see you around.
24-02-2021 01:25 PM
Re: A long rave
@eth thank you for sharing your info about NDIS with me. You are the top expert on it of all the membership from my point of view, having gone through a painful path that pioneered a way for people with mental illness so early on in the development of the NDIS applications process. That in itself, and also that you shared each step of the way with us at the time.
By comparison, I feel almost embarrassed about how easy it has been for me to be approved for it some years later from your initial trial by fire with NDIS. Pretty much all the work was done by the organisation that took on the advocacy for me, specifically my lovely support co-ordinator, who was so very happy about the positive outcome for me. The main thing I had to do was manage my anxiety and ambivalence about it, not get too attached to the idea so that I wouldn't have a pile more emotional and psychological baggage if the outcome was no.
Support co-ordinator/advocate (I don't really know her official title) and I had an initial meeting of two hours, during which she got to know my situation in detail. She made initial contact with my doctors (GP, psychiatrist, psychologist) about their part in the application. I had one appointment with GP specifically relating to it. Bit of a chat during our normal session with my psychologist. My psychiatrist just told me in passing during one session that he had signed off on it as well.
I'm not sure what exactly was provided to NDIS. I know that when NDIS asked for more info about me and sent a new giant form to be filled out, my support co-ordinator filled out the form herself and sent it to my doctors to sign off on. One of the things I imagine would have helped with the smoothness of this process is that I have been with my GP, psychiatrist and psychologist for years and years, and so they know me very well, my ups downs and in betweens, and are all solidly supportive and keen for me to get the extra help. No idea yet how long my plan will be for.
I think I may be like you with the anxiety over review processes and possible tightening of NDIS policies in future. I will be avoiding a recovery coach if it is someone appointed to me by NDIS itself. Is that the case with a recovery coach, do you know? Will be avoiding anyone who comes from NDIS itself, probably do not want to self manage but want a big role in discussions and ultimately the final decision on how the funds are used. If it is my choice, I may not be against my old support worker from those years ago taking on a recovery coach role (need more info about it though). In any case hopefully the overall benefits will outweigh the sustained anxiety provoked by NDIS processes. The clear benefits for you make me feel more hopeful now that it will all be worth it.
I have downloaded the price guide, it is indeed a huge document. It may be helpful though so I plan to read the parts that specifically list categories and items.
Gut pain has settled, thank goodness.
Really love the discussions we are having about writing, performing and creative processes. Seems like another synchronicity between us that we are both now mostly engaged creatively with writing poetry at this time.
Hope your days are going well this week, my friend. ox