Anyone started with the NDIS?

[CheerBear]

Thanks @eth. I tried to find someone to come along as support (still finding the idea of needing support to meet with a support coordinator funny but not) but I couldn't so I'm on my own with this one.

I hope you get somewhere with your CoS soon. It sounds messy and like a headache. Also hoping you find some extra things to be using your funding for that will work for/be good for you. I've used just under $150 of the nearly 70k in funding I have had since November/December 😏 Bonkers.

[eth]

@CheerBear   it's possibly too late for this meeting but when it comes to your review meeting you are probably elligible for a Disability Advocate.  The are in every state and free of cost.  I had one and she helped enormously.

http://www.daru.org.au/organisation/disability-advocacy-network-australia

[CheerBear]

Thanks heaps @eth. I will try and remember them if this meeting today isn't helpful.

[Queenie]

Has anyone successfully received a companion card at all? They allow free public transport and admittance to a number of services for support workers and those employed to support a person with a disability. It usually has the photo of the consumer on it and once approved, is valid for five years. The card costs nothing and is issued by the state government. I recently received mine and it means my support worker and I can go a lot more places.

[eth]

That's great that you've got one @Queenie .  I printed off the details of how to apply at least a year ago now but haven't actually done so.  I think I was just completely over having to prove myself to get NDIS.  Was it hard to get accepted for MH or did you get approved for something else?

[Former-Member]

Hello everyone, I'm new. I joined here mostly because I'm in need of some help with my NDIS stuff. I am about 7 months into my first plan now, but unfortunately, things have been very rough, have not worked out and are more like a disaster than support. I was previously receiving state disability services under the old disability model, and I had my planning assessment last May. It is clear to me that the person who did the planning assessment did not listen to me, because once my plan and funding were approved and came through, most of the funding had been allocated towards a category of support that I specifically stated I don't need or want anymore. I don't know how that happened, and I have tried to communicate with my planner about this, but she also has no idea, and nothing has been done to fix it, rather I have been told to just wait until my review for the formulation of my second plan. 

The category of support this happened with is the social, community and civic participation one. I personally do not need any help going out into my local community, I can do that on my own and it isn't impacted by my psychosocial disability. Given, I am a very introverted person and do not really go out much besides to do things that are actually necessary as opposed to just social things, but that is just the way I am and not part of my mental illnesses or psychosocial disability. Unfortunately, I have met a huge amount of providers who treat it like it is and try to force me out of my home, and to do activities just because they like them and expect me to. 

Because most of the funding was allocated towards that, as in, in my core budget it specifically states an amount that must be spent on that category, I have had to have a support worker organisation. To me it seemed like that wasn't a choice, so I continued with the one I was with under the previous disability services. Problem is that I do not get on with them and they don't get on with me, either, because they do treat my harmless introversion as if it is a disorder. Plus, obviously, something isn't going to pan out well if it is essentially something you're forced to do. I have basically completely withdrawn from this organisation now because of the negative impact they have on my actual mental illnesses and psychosocial disability. 

I find relationships of any kind extremely difficult due to my diagnoses of complex PTSD and major depressive disorder. These are the diagnoses that are in relation to my psychosocial disability. I have had them for most of my life and I am very treatment resistant to things like therapies and medication. These illnesses take away my ability to function in most areas of my daily life, but especially with self-care and home maintenance. 

Part of my funding went towards some type of support coordinator, I can't remember what type. Connection of supports maybe? It took almost 5 months to hear anything about or from this person. Before that, I was just left to try and get out of the above support organisation and find supports I actually need instead. My funding was also approved for other things in relation to my daily functioning deficits, albeit nowhere near as much. So there I was, trying to contact local providers, all day, every day for about 5 months with absolutely no success whatsoever. None of them answered their phone or responded to any of my emails. Then the support coordinator finally comes around. We have a conversation via email. She was very rude and inconsiderate, basically took everything I said for a grain of salt and treated me as if I have no idea what I'm talking about. Kept telling me I should just be doing this or that treatment instead. If they worked, I wouldn't have funding. 

Somewhere she asked if I had utilised a mental health occupational therapist in the past with my MHCP. I said yes, and that I have literally tried all of the mental health occupational therapists in my local area because my GP had referred me to them in hopes they may have been able to help. None of them were able to, unfortunately, and I told the support coordinator this. She basically claimed that I made that up because of my mental illness. 

She asked if I have a psychologist and a psychiatrist. I said no, I don't, mostly for the same reason as with what occurred with the mental health occupational therapists. Again, she refused to believe me. No such thing as treatment not working she says. I've been in the mental health and disability sectors for 3 years, I know this. 3 years? I've been a consumer for almost 20 years, so I don't know if she was trying to claim authority with that statement, but it didn't register in my brain at all. 

At this point I am wondering what use this NDIS even has for me, and am considering leaving at my review for the second plan, because I'm just done with it all, I don't deserve it, I am just a person trying to help myself function in my life and have some semblance of quality of life in despite of my mental illnesses and psychosocial disability, for the first time in my life. I have had a very, very rough and horrible life thus far, very abusive life, hence the complex PTSD diagnosis. I was raised in foster care my whole childhood and it really damaged me. I need some real help to enable.me to build a life of my own for once. But if its not there, who can really blame me for walking away? 

[Former-Member]

I was kind of looking for some help..... But I guess I'll just leave. 

[Former-Member]

Hey there @Former-Member  we're definitely keen to provide you with some peer support and value your post Just a heads up we tend to find on the forums it's best to post a new thread for yourself which you can do by going here and clicking "new discussion". Members seem to get more foot traffic on posts that are in their own space I am sorry to hear how rude your support coordinator was, that seems to go against the grain of the whole purpose of the job. Was there anyone you could escalate that feedback to? As that would definitely help the process flow a lot more, having good rapport with the person in that role. Thank you for sharing your complex ptsd and all you have been through, you deserve support and you deserve to feel safe within your wellbeing networks. There's a few advocacy services here you may be able to get in touch with to assist you in sorting out the problems you are having. Please know you are not alone and we are all here to listen and provide insight. How are you traveling now?

[Former-Member]

Sorry about that, I did think of starting my own thread but wasn't sure because this is about NDIS stuff. 

Yes, I did try to reach out to higher ups and didn't have any success. I have a disability advocate and they are flabberglasted by what has happened. I think the main issue has been that complex PTSD isn't very recognised and nor is treatment resistant depression, plus my presentation of issues is apparently very different to what people expect. 

It seems as if people believe it isn't possible to have daily functioning issues when you are mentally ill, because treatment is supposed to address them. Maybe if treatment works, but it doesn't for me unfortunately. 

I must admit that I also have some problems myself with knowing what will help, because nothing has worked for me yet and I have comorbid stuff that makes things more complicated.

Like I am also a trans person and my gender dysphoria is very severe, which makes self-care very difficult to work with. 

Nothing has changed, so I'm still travelling the same, much like I always have really. 

[Former-Member]

Hey @Former-Member  no problem, if you're still up for starting your own thread I would definitely encourage it. It is likely to get more responses - in addition if you need peer support around trans related challenges and gender dysphoria you could post a thread and the community will provide some peer support. I am sorry to hear about these pains, you're not wrong, there's a wee bit of a way to go before the sector starts to respond to complex trauma appropriately, but changes are slowly afoot. Have you ever come across a practitioner you have had particularly good rapport with, or one particular professional that has made a difference? Also just wondering if you've ever checked out the National service Q Life? It's likely they could link you into more local support services for Gender dysphoria as well. As mentioned we are here to listen