Lived Experience Forum

[Mazarita]

@eth hey lovely, online now if the our times are in sync for a live chat. ox

[Mazarita]

Not tagging anyone because this post is just me needing to write a bit compulsively over about the past day. Mind is going fast and very insistently with crowded thoughts, beyond meditation and breath work. Writing here on the forum is helping me to order the confusion of it a bit, I think.

Met with my old support worker today. We have become friends since that support relationship came to an end some years ago, though have seen each only occasionally in the years since. We talked about her now being an independent mental health support worker registered with NDIS. I wish for her to be an ongoing support worker to me when my NDIS plan reaches the stage of actually being able to do something with it.

She is keen and available to me ongoing for two sessions each week of 2.5 hours, five hours per week in total. One of these each week would include 1.5 hours of yoga for people with mental illness that is also an NDIS service she provides under some service category or other.

In the past she has also worked as an NDIS support co-ordinator and had some advice for the pre-planning meeting and beyond. My mind feels a bit fried today and I'm not sure I even now remember a lot of that. Hopefully at least some of it will come back to me before the meeting.

I guess I'm in a bit of a tizz about getting mentally ready for that pre-planning meeting. It seems a big and important thing to me right now to know what my goals really are, not just some superficial ideas off the top of my head that sound good at the time, or just seem to fit generic psychology-speak.

Also unclear what exact services might really be helpful to me, though some main ideas. Overwhelmed by the big documents that could help with giving me more ideas about exactly what could be available to me that I have not thought of.

I have an acute sense of the importance of the pre-planning meeting in NDIS determining how much support they are willing to give me, and on the overall plan itself, ultimately what I am actually going to be doing towards me finding a better quality of life. If we don't get it right in this meeting it seems to me I could end up with a plan that is not really what would help me most, though the NDIS may think so based on their broad generic ideas about mental health care.

My head feels a bit like a soup of half-understandings about how the process of the NDIS works, the complications and considerations seem a bit too much for me to hold with clarity in my head. It's kinda gone to mush.

Oh well, this post has helped me so far in giving me a place to write out what is all over the place in my mind today, really I'm in a fog of too many thoughts in general.

Now at the end of this post, I kind of see that I just have to take it one thing at a time. Start with some time at the computer thinking, writing, clarifying about goals. After that what activities and support I think might really help me. 

[Appleblossom]

I needed at least a few days rest to cope with big NDIS events.  There is a lot riding on it.

@Mazarita   Good luck with your journey.

[Mazarita]

Thanks, @Appleblossom. What you said has reminded me that others have gone through these feelings of confusion, anxiety and overwhelm at this stage of the process. Looking forward to when this stuff is eclipsed by actually doing the helpful things without having to think so intensively about their bureaucratic machinations and be in a difficult state of mind and emotion about them. At this point I am still finding NDIS as Centrelink II.

[Shaz51]

@Mazarita, @Appleblossom , @eth , @Faith-and-Hope 

i was told to go for NDIS, but that was before soo much happened , so for now i might leave it or not 

[Appleblossom]

Been having really good conversations with my MH nurse today (NDIS).

Apart from the fella/girrrl issues, I love this anthem

Does not matter what your colour, As long as you true fella, as long as you real fella.

@Faith-and-Hope @Mazarita @Shaz51 @Adge @eth @greenpea @TAB @MDT

 https://www.youtube.com/watch?v=M_DHwp5vYBI 

[MDT]

Not a bad anthem aye @Appleblossom
Good one 🙂

[eth]

Good morning to all here lately and all who've tagged me over the last few days, and anyone else reading this post.  @Shaz51 @TAB @Appleblossom @Adge @Meowmy @Exoplanet @Mazarita @Angels333 @MDT @Former-Member @TideisTurning @Faith-and-Hope @Daisydreamer   I tend to be on this thread more than others, but am only here a couple of times a week atm.  Thanks all for keeping me in the loop.  I see your tags in my inbox but haven't read all your posts yet.  Just wanted to say hi first in case anyone's around and feels like chatting.  Take care and stay kind everyone.

[MDT]

Hey @eth
How are you ?
I am around and about this morning for a bit.
Good to see you

I am waiting on a coffee atm

[eth]

Hi @Mazarita   hope to catch you sometime today.  It's great that you're finding writing here helpful to get jumbled thoughts to settle somewhat.

Your former support worker sounds like they could be a really good fit for you and also have some useful skills.  Also there's an organisation called Ability Links that can help you find possible activities in your area.   For everyone, not just those with NDIS funding.  They helped me a lot when I first came here and wanted to gently come out of hibernation.

With pre-planning and then getting your plan, keep in mind that if you don't like it there are appeal processes you can use.  But also as far as I know these days you get to preview the plan and have input into the final version without having to do a "request for a review of a reviewable decision" (rord) as NDIS calls it.  Also known as an internal review.  This is one of the processes that has changed since my current plan started.  First I had a 1 yr plan, then I got a 2 yr plan which has been really good - getting to have a year without the need for further plan meeting, review and all new reports etc was really good for me.  My plan doesn't expire until the first week of July but I already have lots of anxiety every day about the preparation and the processes which have changed recently.  Having a meeting with my coordinator of supports on tuesday morning which will hopefully settle my mind a bit.  He's very good and has been a social worker in the past and had a long career in this city so he really know's the what's and the who's. 

He even brought me several plants the other day that he'd potted up for me from his garden (not charging me of course for that time).  So thoughtful.  It was totally because of his help that I was able to be housed so swiftly.  The location was sheer luck, and is as good as it could get in this town.  I have  salad greens, mint, oregano, sage, parsley, tomatoes and a bromeliad from him.  So my balcony gardens front and back are coming together.  I'm on the first (top) floor and have no access to a patch of earth to plant into so it's all in pots and planter boxes.  I also have coriander, basil, chives, schallots and several flowering plants.  So far just the geraniums are flowering in a few different colours.

You are absolutely right about just taking one thing at a time, one hour at a time, sometimes even 10 minutes at a time.  The person who's helped you with your application sounds like they could be a great help with some of your questions.  Nearly all my support hours fall under daily living or social and community participation.  For a long time I was only using support hours to go to essential appointments and do essential errands (groceries, chemist - that sort of stuff) and then started adding in going to sit at the beach or go for a walk (increased health and wellbeing comes under daily living).  Over time started joining in some group activities - Sheilas in the Shed - craft - the local Womens' Centre - courses and art/craft stuff (I did that Living Beyond Abuse course with them and another about Improved Wellbeing and another about Personal Boundaries)  then found 2 different writing groups and the disability alliance which I'm now in 3 of their groups - mental health group, womens' group, and members action group (for which I write a monthly report).  And late 2019 early 2020 I did the MH OT driving lessons and now practice driving with a support worker with me a few times a week and have now driven by myself to bro and sil's (2km) twice as well.  Plus assistance to progress to walking and using public transport and taxis by myself (tho' this is slow since covid).

So this has turned into another really long post ... it's been helpful for me to write it and see how far I've come, but I also really hope it's helpful for you to see the scope of possible activities with NDIS support.  And I forgot to mention 2 years of physio-based tai chi in the heated pool followed now by a formal class once a week in a hall and an informal group in a park once a week.  Which has benefits into all areas of my life.  And being funded for about 3/4 of my weekly psychology under the category of capacity building daily living that can include therapy that's not possible with mainstream services (coz with a MHCP you can only get a fixed number of sessions per year).

Hang in there darl, things will come together for you.  It just takes a bit of time to get set up.   Baby steps.  But so worth persevering.  Please have hope my friend, the most important hurdle is done, you've been accepted.

You might like to check out Hire Up as a source of support workers - they are freelance workers and you can choose your hours etc.  They've been fabulous for me.  Ask me if you want to know more.

xoxo