Anyone started with the NDIS?

Hello @Former-Member I am sorry you had no response to your original post. I started this thread and I feel responsible, but I have my notifications set to only message me when my name is tagged. You put and @ in front of the name and a box will pop up where you can click on my name. As you are new, you might not have known this. I have done my best to respond to anyone who joins this thread so I'm sorry I missed you. I will go now and read all your posts again and try to respond in detail.

@Former-Member thanks for getting involved here.

@Former-Member two things come to mind with your first post - one is : How is your plan managed i.e. are you agency managed, plan manager or self-managing? It will make a difference to any advice I can give you.

The other is : You can do a 'Request for a Review of a Reviewable Decision' at any time with NDIS, you don't have to wait for your next annual review. And their rule is that this type of 'internal appeal' has to be seen by a 'fresh pair of eyes' at their end. I'm using the inverted commas where I've used the NDIS language. If you are not satisfied with the result of that review, your next step is to appeal through the Administrative Appeals Tribunal, who can over-rule an NDIS decision. (I went through both those processes before I was accepted for NDIS funding.) If you have no 'informal supports' (family or friends to support you in this stuff) then I'd suggest getting a Disability Advocate involved. They are free and available in every state.

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

I had one for my AAT appeal and they also got me a Legal Aid solicitor for free.

I will try to reply to your next post next.

Please be adware that I'm no sort of expert and not employed in this area, just a person with complex PTSD and bipolar 1 who has eventually been accepted by the NDIS.

Ok @Former-Member I should have read your next post before I responded but I wanted to get back to you asap. My adult child is non-binary transgender and also has had dysphoria all their life, (now 30 yo and soon to have top surgery) so you have a definite ally here with that side of things.

I see now that you do have a disability advocate so I really hope you continue to work with them and not give up. The whole basis of NDIS is what they claim to be 'Choice and Control' and you have the right to work out what this means for you in your own time. There is so much I could write right now, but maybe not all of it would apply to your situation, so it's best if you can tag me and ask questions. If I don't know the answer I'll do my best to find out.

@Queenie @CheerBear @tisme @Bunniekins please get involved if you have any advice for @Former-Member who is new to the forums and having NDIS problems. And anyone else you can tag here would be great.

@Former-Member You are welcome on this thread. No need to start another one unless you want to.

Thank you @eth for your input. My NDIS plan is agency managed so I am restricted to registered providers. I have also already had a request to review and spoken to the administrative appeals tribunal, no luck from either, apparently. I have a disability advocate specifically because of my functional problems and lack of informal supports. At this stage, she is as flabbergasted and disgraced as I am and we are still finding ways to work through these rather large problems.

I appreciate having an ally and I must commend you for being supportive towards your adult child. Probably seems like a given to you, but there are far too many trans people who do not have supportive caregivers. None of my foster carers were and a lot of my childhood trauma was in relation to being a trans minor, or rather they used it as an excuse and justification for their abusive behaviour. Unfortunately I developed an unhealthy self-image and self-concept because of it, and have a lot of body image issues.

Again, I appreciate your effort to try and get me support, thank you.

Hey @Former-Member My thinking about supporting my now adult trans child is simply that I will always support them being authentic to themself and am actually relieved that they are creating a life they are comfortable in. I know that our society makes it really hard to be trans in many ways including with official paperwork that is needed by all of us. My kid is something of an activist and has worked hard to educate all, particularly those in their immediate circle of friends and family. At this stage they seem to have a large on-line community supporting them too. It has been a steep learning curve at times, especially learning the right language to use, and some of our family has not wrapped their heads around it at all.

I am happy to support you with this too, but you might want to start another thread about these issues and how they affect a person's mental health. I don't think it gets talked about enough on these forums. Dysphoria is terrible to live with and causes so many other problems, like those you mention, especially when combined with abuse, and especially if that abuse is by people you are meant to be able to trust.

I'm not sure what else to suggest regarding your NDIS at the moment but will be doing my best to come up with some suggestions for you.

Sending warm wishes and thinking of you, Eth.

Truly inspiring to read about your adult child @eth It is always great to hear a story about a trans person who is living authentically and well. I was hoping that my NDIS funding would help me to begin developing healthy coping strategies in this stage of my life where I am unable to afford further gender transition related healthcare, as I never had the chance to develop any growing up and have acquired some rather negative behaviours that are damaging to my health as a means of coping, I want to get rid of them but it is very hard to replace them when you have nothing to replace them with. It is a bitter pill to swallow having to accept that gender transition does not fix everything and is a very slow and financially demanding process.

@Former-Member It probably sounds better than it is for them some days. They struggle to 'pass' every time they leave the house, and also have cPTSD from events in their childhood. Add to that they are parenting, delayed top surgery to have a 2nd baby and then weren't able to chestfeed anyway. So that also means they've been on and off T hormones over the last couple of years, which brings it's own set of problems. And they have physical illness too plus are legally blind. But they don't give up working to be authentic despite all of this. And they have an amazing partner and a 4 1/2 year old who just started big school. They are doing a crowd-funding thing on-line to raise the money for their surgery.

So ... back to you ... does your NDIS funding cover psychology or counselling? I know it's frustrating doing the searching for a compatible psychologist, but I also know how much having one in my life helps. Perhaps you could contact QLife to find out about allied (to transgender people) therapists. If they can't directly link you to a therapist, they can def link you to support organizations in your area that will then know what therapists in the area are allies. I think @Former-Member put a link to them in one of their posts here. Even if NDIS won't cover this, you are entitled to 10 appointments a year with a Mental Health Care Plan from your GP.

Re negative behaviours - I used to have a chronic habit with herb - it took me til I turned 50 to get off it. And I still smoke ciggies, which technically is also self-harm. It's really common for people with MH challenges to self-medicate, especially PTSD. This is another issue that a good therapist could help you with.

I know you say you are treatment-resistent but in my opinion that means you haven't had the right treatment yet. I'm sure that somewhere out there is a trauma-informed transgender friendly psychologist. If I knew where you are I could search more specifically for you, but that's against the forum rules. It took me several years after diagnosis (2009 - 2017) to get a really good team in place - gp, psychologist and psychiatrist. And the right balance of meds.

Hope today is one of the better ones for you. You have support here and it's a safe place. I can only speak from my own experience, I'm not a therapist or anything, so if I make inappropriate suggestions do tell me.

I was told in my planning assessment that the NDIS doesn't cover psychology when I asked. The lady said no, it doesn't cover anything medical due to liability associated with duplicating services that exist in the health system already.

I do have and update my MHCP yearly, but ever since I left foster care I have not been able to find a single mental health professional willing to treat me long-term, if at all, and a shocking amount outright refused to because I am trans and they didn't want to deal with that on top of already challenging mental illness.

In the past 5 years, my GP has referred me to at least 20 psychologists and 16 psychiatrists, as well as 5 mental health occupational therapists and about the same amount of social workers. She has said that there are now literally none left that she can refer me to.

I have tried almost 40 medications throughout my life, all of the ones I have tried either made things worse landed me in hospital or only gave me side effects. This is one of the reasons why psychiatrists won't treat me. The trauma I endured in hospital makes it hard to treat certain symptoms I have also.

My GP has tried referring me to my local PHN mental health service but they won't take me either because they only offer psychosocial supports at the moment and have no plans to change that in the near future. The community mental health service has treated me like absolute garbage and has outright said they refuse to see me ever again. So you can see I have had major difficulty with accessing appropriate mental healthcare.

Not that there were no issues when I was still a kid, but the type of child protection order I was under made mental healthcare mandatory and there is a specific mental health service for foster kids who have complex mental health problems because of developmental trauma as a result of being in care. There is nothing out there to continue treatment once you leave foster care, it is as if the govt thinks our problems just magically fade away into thin air.

Sorry to hear it's been so difficult for you @Former-Member . I'm a bit out of my depth here as to how to help, short of just being here to chat to.

One thing you need to know is that I have NDIS funding for weekly psychology and I know others who do too. The person who told you they don't do it is wrong. But it is very hard to get. You need to prove that you have exhausted the main-stream supports available and that they're not enough. And that your diagnosis is 'life-long and significant'. They will only accept this from a clinical psychologist or psychiatrist. On top of proving my diagnoses are life-long my psychologist had to say something like "weekly consultations are necessary to help C manage better and will ameliorate some of her symptoms, but will not be a cure". I can't see a way around having to get this documentation from clinicians, sorry. I can only speak from my own experience. And it was definitely worth the fight to get it. It's $175 per week for almost the whole year from the start of my plan.