Lived Experience Forum

[Queenie]

I really hope I can appeal @Appleblossom . I only went in for the same plan with support coordination and an OT/dietician thrown in seeing as I’ve developed metabolic syndrome due to meds. He said the meds caused the illness not my disability so the answer was a big fat no. I was also disallowed support coordination. Overall it was a terrible experience.

[eth]

Thinking of you and feeling for you @Queenie   Not sure if you know about them already or not but if you are going to appeal you could be able to have a 'disability advocate' like I did when I was repeatedly declined by NDIS last year and the year before.  I went through internal review and then external review when that was declined.  With the external review it goes to the Administrative Appeals Tribunal, an agency that's completely separate from NDIS and has the power to over-rule NDIS decisions.

I don't know which state you are in. If it's NSW here's a link for disability advocates : https://da.org.au/

They are free and helped so much.  They even got me a free legal aid solicitor.

If you're in another state I can try to find out for you.  I would start with just entering "disability advocate" and your state on the search bar.

I understand how awful it's feeling right now and the toll the whole process takes on our mental health.  This info may be too much to take in just yet.  I just want you to know that if you do want to fight them you have options and I'm here to support you.

I'm pretty sure a DA could also help you with centrelink decisions, not just NDIS.

The first thing I recommend is to see your Dr and any other therapists you have.  Tell them everything about how you're feeling and what you're going through and ask for letters supporting your continuation on DSP.  I think these days it has to say you will be unable to work for at least 2 years.   As far as I know the disability employment service has to start with a 'readiness for work' assessment - before decisions are  made about pushing you to newstart from DSP.  

All my suggestions here are just based on my own experience and some of the details might not be correct, but they are a place to start.

Sending you strength and support.  Eth

[Queenie]

Thanks for the info @eth. I’ve been feeling extremely vulnerable since yesterday. I had a job capacity assessment recently (just before my recent hospital stay) and it was a nightmare. However they said I could work only 2hrs per fortnight so could stay on dsp.

 I’m feeling especially vulnerable now as my gp doesn’t do Centrelink paperwork and it is near impossible to see my psychiatrist at short notice. 

[eth]

Sending warm wishes @Queenie .  Can you get a hard copy of your recent assessment and send it to the NDIS planner.  It should still be valid.  That's what I would try.

Still worth ringing the psychiatrist, tell the receptionist how bad things are going and ask them to ask the psych for you at least for them to call you asap as you are in such a difficult place.  Do you also have a psychologist?  (sorry can't remember)  A letter from a clinical psychologist would be accepted by NDIS too as far as I know.  You could lodge these 2 documents with a 'request for a review of a reviewable decision' - that's what the NDIS calls it.  It's also referred to as an 'internal appeal' and is a necessary step before you can go to the AAT that I mentioned.

Here for you and just trying to help based on my own experience.

Might also be worth getting another GP involved - you are entitled to do that at any time.  It could be as well as, doesn't have to be instead.

[eth]

Hi @Queenie @Appleblossom @CheerBear @Zoe7 @PurpleKathy and anyone else still following here - sorry if I've missed you.

I've been unable to even write about my plan review meeting and can't believe it's a week ago already.   I came out of it feeling like the woman from NDIS was just so negative about what I asked for, brick-walled us a few times and cut the meeting short before we talked about important things.  It started with her asking what new things I wanted.  Each thing I asked for was debated for some time, even with my coordinator of supports and my sister-in-law advocating for me.  She never did ask me about what hasn't been working and why, which I thought was really important.  Or what my new goals are.  At one stage she even said that if I had a physical disability something would be approved but since I had mental health disability it would not... my psychiatrist said this was outright discrimination.  And my CoS pointed out to her that there IS a line item for it in the NDIS price guide and there is a local company that is registered with NDIS that does it.  Everyone has said that if I don't get what I've asked for I have 90 days to appeal, but as far as I know your plan gets put on hold until the outcome of the review of the decision.  

I won't even know the outcome of the meeting until the day my current plan runs out, another 3 weeks.  So all I can do is wait and try (it's very hard) not to worry and stress on it too much.   My main worry is that psychology weekly won't be approved again.  I really need it.

Thanks for all the support people gave me while I was getting ready for it.  It turns out that a lot of my preparation was futile.  I was accelerated for days before the meeting and totally flattened for days afterwards.  At risk of a bipolar swing, I thought that was what was happening, but I seem to have stabilized again the last 2 or 3 days.  Thank goodness.

[CheerBear]

Far out @eth. I have lots of words I won't use about what I'm thinking of the NDIS, and especially the way psychosocial disability is being managed within it (or not).

I'm imagining that stress of waiting and the uncertainty that comes with it, and I'm sorry that you'll be doing that with the not-great sounding meeting on your mind.

I'm so with you in thinking the questions of what's not working and why are so important.

For what it's worth, my understanding and experience with request for a plan review is that whatever plan you want reviewed continues rather than gets put on hold, until your review. That's what has happened with mine at least (for the now nearly 5 months I have been waiting for it to come up 😑). Hope that helps ease a tiny bit of worry, even if it is a teeny tiny bit.

With you ❤

[Queenie]

Oh @eth  I’m sorry to hear your plan review meeting didn’t go well either. I guess sadly in some ways, you and I are in similar boats with psychosocial disability and the NDIA. My planner wasn’t interested in me either. There was another man whom I overheard in the waiting room threatening suicide when I was walking out of my meeting defeated. I guess that poor chap was also in a similar boat. 😪 I find the whole process very triggering and I know I’m not the only one.

The NDIA should be ashamed.

[eth]

Thanks @CheerBear  and @Queenie .  I am trying to focus on the progress I have made over the last year and telling myself I can keep on progressing whatever happens with the NDIS.  Trying to believe it!  Determined not to get as deflated and depressed as I used to in the 1 1/2 year fight to get it in the first place.   And planning to use as much of the remaining funds as I can over the remaining 3 weeks of this plan.  My favourite support worker has left her organization (the one that has stuffed me around repeatedly) and signed on with an online platform where support workers freelance and I can book her directly for as many hours as she can do.  Now I just need to put my big girl pants on and terminate a service agreement with the mob she was with.  Will start with a call to my coordinator of supports.

[PurpleKathy]

Hi @eth and all others following @Queenie @CheerBear @Appleblossom @Zoe7 

Sounds like the usual traumatic event which is now being acepted as the norm for an NDIS interview.  The thing is why should we accept this as being what you get, why should we end up in an absolute mental state prior to such events.  It is wrong that people with mental health issues are being treated as second class citizens and less than those who have physical disabilities.  I have both physical and mental issues and they still want me to establish which is he main concern, to be honest they are intertwined on so many areas, I find it difficult to say one is more important than another.  I wanted to say hang in there, the waiting is terrible, but try not to go through to endless number of scenarios in your head in the meantime. Wait and see what they throw back and then be assertive and proactive.  Itemise what you get in a positive manner and jot down the necessary losses.  There are forms online that you use to apply to the NDIS regarding issues such as a re-review due to failure to address areas which are a necessity.  Don't sit back and take it if you truely consider they have short changed you without having truely considered your situation.  If you fill in these forms they will need the information you feel was NOT taken into consideration.  Now in the meantime, just wait and try and stay as calm as possible, hopefully they will let you know when it arrives, otherwise, keep checking on the participant area of the ndis for your new plan. OK..... hope this helps. HUGS 🙂

[eth]

Good morning @PurpleKathy  thanks so much for your support and advice.  I agree with all you've said and I know I have the option to request a review of their decisions if it turns out to be necessary.   Doing my best to let go and focus on keeping up my 'recovery' efforts and not just think about what things are like at their worst which I keep having to prove to NDIS.  It's not easy but I'm not depressed about it since the first few days after the meeting so that's a good thing.  I'm on much better meds now than when I was fighting for initial access to NDIS (that took 1 1/2 years) and also have more positives in my life - so I'm hanging in there.

@PurpleKathy @Queenie @CheerBear @Appleblossom @Zoe7  I find the interpretation of 'recovery' has changed in recent times and seems a lot closer to the truth these days.  I found this :

"Principles of recovery oriented
mental health practice
From the perspective of the individual with mental illness, recovery means gaining and retaining
hope, understanding of ones abilities and disabilities, engagement in an active life, personal
autonomy, social identity, meaning and purpose in life, and a positive sense of self.
It is important to remember that recovery is not synonymous with cure. Recovery refers to
both internal conditions experienced by persons who describe themselves as being in recovery—
hope, healing, empowerment and connection—and external conditions that facilitate
recovery—implementation of human rights, a positive culture of healing, and recovery-oriented
services. (Jacobson and Greenley, 2001 p. 482)
The purpose of principles of recovery oriented mental health practice is to ensure that mental health
services are being delivered in a way that supports the recovery of mental health consumers.
1. Uniqueness of the individual
Recovery oriented mental health practice:
• recognises that recovery is not necessarily about cure but is about having opportunities for
choices and living a meaningful, satisfying and purposeful life, and being a valued member
of the community
• accepts that recovery outcomes are personal and unique for each individual and go beyond
an exclusive health focus to include an emphasis on social inclusion and quality of life
• empowers individuals so they recognise that they are at the centre of the care they receive. "

from https://www.health.gov.au/internet/main/publishing.nsf/content/CFA833CB8C1AA178CA257BF0001E7520/$Fil...

@Dadcaringalone @Mazarita @nashy @s-jay @Lauz @frog @outlander @Shaz51 @Teej @Faith-and-Hope  you might find the above interesting too.   I think it would help a lot of people to read it.