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willowmaker
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Chronic & Complex Case | Certified BUT Unacknowledged

Hi, How ya doing?  I'm on the NDIS and was actually on DSP before the latest welfare reforms assimilated preexisting mental health services in the local area.  Long story short, I've actually gotten worse on NDIS but still remain on it because the facilities and services I once utilized, have now all but been assimilated into today's centralized structure and new way of doing things.

The amount of promotional activity and gloss in which it is done presents many concerns for the many no being funneled into said system. However, discussion on the topic is met with a lot of resistance from promotional schemes that rely upon the new wave of categorizations, solutions and business interests.   

 

Enough said.  The damage done within my world of complexities is what has lead me here and in that I can't say I am exactly confident as I fear many of the points of contacts are as all prone to the same negative impacts that the NDIS has been having on me.  Simply put and I sectioned off with the labels Chronic and Complex on some of my labels, yet NDIS will not acknowledge such leaving me with untrained ABN support workers with very little experience dealing with chronic and complex mental health.

To be assisted with those that used to help me prior to NDIS I need to have more outbursts of a violent nature in order to warrant the higher tier of support.  Unfortanley I am already misunderstood and this new take (new mandate) has basically left me in a bad situation as going out into the community with untrained staff actually just makes me feel more isolated and at risk.  

I'd love to talk about some of the examples that both my daughter and I have been enduring and how that aspect for complex cases makes that part of our supports counter productive.  So many support workers only in it for the money taking photos of us yet just don't get us or the work they are doing.  Those who do not make for great promotional material are getting left behind and those who were once doing well before the great take over are now struggling.  I know this because I was quite proactive before NDIS took over the mental health sector.  Whilst I struggle in the community, I have a couple of friends similar to me and many of us feel the same way but we do what we can do to put the unity back into our little community. 

That is my angle ... sorry I am not able to paint a nice picture but am capable of doing so when not so entrenched with NDIS.  Please understand I am not looking for advice on NDIS - I have four people in my family on it and know it very well.  I'm just letting others know I have been in this game for over half a century now and seen a lot of changes.  I think I am about ready to give up on the centralization and all it wants of me - but will see if I can hang in there a little more re finding others like me. 

The chronic and complex signatures assigned to peoples labels are not acknowledged as they should be and thus due to said conflict I find that system more dysfunctional that what is attributed to me.  

 

7 REPLIES 7

Re: Chronic & Complex Case | Certified BUT Unacknowledged

Hi and welcome, @willowmaker , it's good you're here, where people can understand what you're going through. A lot of us are "chronic and complex" cases here!

 

I am really sorry to hear about your situation 😞

 

Do you have any professional support? Like a psychologist?

 

A handy forum tip is if you type @ and then click on a name in the drop-down box, that person will get a notification and won't miss your reply. 

 

I hope you find the forums supportive. 

Re: Chronic & Complex Case | Certified BUT Unacknowledged

Hope I did that correctly.  Thanks for the tip. Nice name.  I love Nature too.

I'll cheer up 🙂 ... I just had to get that off my chest was all.  I am mindful of the impact my own posts and outlook can have on others.  Yet still feel the need to express some of the not so happy stuff in a way that might have me understood a little better is all.

YES - I have psychotherapy available to me.  I usually do well with it.  For me it is like medicine.  I do have PRN but prefer not to get in a state where I need it.  I've had hundreds of sessions since 2012. That said only with four people as connections are very important to me.  I generally take me time when transitioning from one to another generally having up to three meetups and a few sessions with different therapists until I find the best match for me.  

I even agreed to be a part of SANE's counselling services to see how that goes as well.  It can help to talk about some of the difficulties outside of a forum environment as well.  My hope with that service might be riding my bike in a safe place or finding some space outside in a quiet area to have a chat and feel supported whilst getting out of my room a little more.  Like a little extra support like that I think is certainly worth trying out.  

I have one more phone call with SANE before making that final, but definitely think it's worth a shot.  Like I do have an NDIS funded therapist but it would still be nice to have someone else to talk with regarding my goal of getting out of my room more often.   

I figure I will go for a ride now but struggle with people on the side walks, roads and such.  I avoid them as much as possible but also try not to project of reflects negative energy because of how that tends to work.  Riding on the road can be dangerous with so many more cars and careless mindsets these days.  Riding on the footpath can be just as invasive for others which I tend to pick up on in a heartbeat.  Lately I have been thinking of taking my chances on Rural Roads but then whilst I can say I am generally depressed with life and the world as is, I don't quite have a death wish.  I smile at that thought.  

I'm using too many words now but all good; feels good.  No harm in those words... not that I can sense.  I need the sun - that helps either way regardless of how hard it can be to get out and be on display.  The good thing about cycling is I find I don't get caught up in eye contact anywhere near as much as I do when walking ... although walking is much better for the heart in other ways.  

I got a LOT of weight to drop as well.  

Yea ... I best go make an effort and keep working on that as well.

Thanks for the reply ... Yea - I got support thanks but I am my own profesional. I just allow others to help if they so wish and am careful about what methodologies and the people that I open up to and or take in.  GPs and Psychiatrists are not professionals I consider helpful for me. Great for marketing & politics but that's it. That's my opinion. I have good reason for it, been playing that game for decades and decades. In fact, I find those aspects to the medical industry quite a hindrance for people such as me.  Therapists however I have been doing for decades and find that aspect of support very helpful and is always welcomed. 

Thanks again for reply.  

  



 

 

Re: Chronic & Complex Case | Certified BUT Unacknowledged

I really appreciate hearing your story. The industry you describe is one I'm seeking to enter and I'm already very much over the NDIS. For something that was supposed to increase national productivity it's really good at generating systemic waste.

 

The philosophy itself is flawed. Insurance is about liability. Recovery is about assets. People need/deserve asset-based frameworks. Systems that assume otherwise are the real liability.

 

The logic was, we're inefficient, but the selling-point of the NDIS is always it gives more money. Does more money = more services? Sometimes. But, like you said, a massive portion of those resources seems to go straight back into marketing, marketing and then more marketing.

Re: Chronic & Complex Case | Certified BUT Unacknowledged

I feel a desire to add a more positive note. I am still very much working on the answers. For now my best answer is to be data-based. And, when I say data-based don't just mean doing what others have done but actively trying things out, in the search for more solutions.

Re: Chronic & Complex Case | Certified BUT Unacknowledged

You guys sound very wise in regard to the ndis and how things happen in the real world for complex cases of mental health @wellwellwellnez @willowmaker .

 

im just entering the real world after a 10 year battle with mh and it’s affects trying to thrive but it’s hard going. I don’t wanna bore you with my struggles but the stigma is real. 

people are afraid of the different and it shows guess it’s just the theory of man.

 

I don’t really know what else I could add to this conversation but your thoughts and feelings are valid all the best in your journeys 

Re: Chronic & Complex Case | Certified BUT Unacknowledged

I understand the desire to be more positive.  The current system is basically killing me.  That's the long and short of it.  I have a good idea with what already works for me.  The problem is more an issue of said reforms not achklowdeging those same solutions.  Anything outside that economic drive chain that does not round off correctly is generally rejected.  

 

That said, I have a last ditch plan in place.  I'll be presenting the complexity of my case one last time with a team of people helping me outside the box, without allowing myself in being reduced to qualifying for a complex behavior program. 

Hard to explain.  I need to plan ahead before all my public interactions with medical facilities just to ensure I don't get caught up in the stigma I am often faced with.  My interactions are plagued with legitimate issues/impairments  that quickly get out of hand as most staff in the lower end of medical facilities are robot driven (no offense) which leaves them little time and energy to afford me the space and time I need to be understood.  That's when I have to raise my voice over the plastic barriers because I can't hear them (also legit issue for me) - but when you combine my raised voice that then starts to stutter and quaver as I get lost in my words and or overloaded with the speed and information being relayed to me ... yadda yadda

Unable to follow signs correctly when under stress, order my lunch behind a very loud and rushed line of people wanting me gone ... and so on    

The trouble with NDIS in this demographic of invisible disabilities (although becomes quickly visible) - or better said when put with untrained ABN support workers who have no idea how to redirect, advocate, be unassuming, and so many more other facets to assisting in this minefield of which I speak ... 

... and here is the crux of the matter when it comes to being certified a chronic and complex case, the complexities of one trying to fit within such an economically driven society for all it's great advances, the only way NDIS will reinstate previously qualified assistance (before the NDIS take over) is for me to be blamed as someone with behaviour issues?   AKA - must qualify for a 'Complex Behavior Program.'  

I want to be positive too.  But those things need to be aired before I can move on.  Lately I have been doing better hanging out with people just released from the mental ward than your average run of the mill NDIS workers.  That's actually positive stuff in it's own right.  Being truly accepted is where healing begins. 

Anyways - I go make a positive post about getting fitter.  I see what happens with the new NDIS worker I have line up.  I've started putting my foot down with how I am treated and I think it is helping.  I don't mind training those who need a little help, but more careful when it comes to medical visits.  I need better support for that and avoid it at all cost.  My extreme PTSD plays heavily into that where being mistreated did not just take place in childrens and foster homes.   

I'm not quitting NDIS any time soon - they might actually dump me on the grounds that I am too much work for those not into complex cases which is fine by me.  I don't like quitting and I also like keeping them honest, however it gets draining.  My biggest contribution to society is staying stable but sadly most everyone else makes it about the money and that is where the stigma starts all over again.  No matter ... staying stable costs them a LOT less either way so I am good with just working on my stability regardless of what all these professionals would have me think.  One GP waved their hand and dismissed my depression as if to suggest I should be out working.  I chuckle now to think how many of the less experience behave like that.  I am really done with doctors and shrinks when it comes to such things.

Alas ... I am also sick of having to account for being sick and also being told I have behaviour issues.  I've actually been very polite in most of my interactions to scared to set medical staff off lest I be branded as aggressive for having such a forceful tone when I speak.  More to do with my hearing issue than anything else but I am done caring.  

I recently had heart attack symptoms.  Swollen legs, pain in the arm and chest, very very faint after just walking a little in the house.  My wife wanted to ring an ambulance but I pleaded with her not to because of the Stigma I face every time I am presented to medical authorities. 

The noise of the machines, the bright lights, the rapid speech of staff, the dismissals, patronizing, the small spaces, tension of others, body language, micro movements and on and on massibly affect me in ways those professionals care less for.  They have taken negative notes on me and just treat me like a drug addict/criminal (which to whom I can respect for if they can respect me) ... My needs are NOT catered for and I am not respected in these so called places of healing.  I have asked for the ambulance to only be called for if I am not conscious. I could not stand having to put up with the drama any other way. I mean just look at how they carry on in those ER TV shows ... pretty much sums it up.

Each to their own of course.  I'm just not made for hospitals.  In fact I am not made for this world despite what the manual may or may not say.

Your right though ... I need to do a memory dump and gather some new data.  Mostly most of what I already know but have been distracted from with all this having to prove just how broken I am in order to qualify for X,Y & Z.  It's always someone else from NDIS telling me what I could have if I just get an OT ... Make sure you use your funds ... Use it or Lose it!  Mentality.  Sigh ... You kind of hit the nail on the head re the money and how it's driven.  Very Very job focused ... job creation.  I had on OT charge thousands for X amount of visits who qualified me for a treadmill (rental at least) but was knocked back still.  I was instead told NDIS would prefer to pay someone to come to the gym with me, which for me dismissed all my DXes.  Just one conflict after the other.  In the end my mother helped me with getting a treadmill off eBay for less than one quarter of what the OT charged NDIS for her wasted time. 

I have so many other similar stories where I have had to present my worse day by means of some specialist getting paid X,Y & Z to do X,Y & Z reports going back over and over how it is that I am non functioning in X.Y & Z ...

I've stopped asking for things as a result and also told people to stop telling me what I can and can't get.  The consumer side of this process is very really and very toxic. This is separate to the issue of how NDIS is failing mental illness as a whole but just as relevant when it comes to negatively being imprinted with being overly identified in being unable.  Before NDIS I use to enjoy my good periods ... now I have none.  Something is wrong and they do not like me spelling it out for them.  That is when I am fobbed off.  

Forgive me unloading like so.  It's been a long time since I have written so openly.  

I rode my bike good and hard today and look forward to doing so again.  I think I will even go for a walk to wind down.  I want to get better and sick of being held back like so.  I mean not to be thankful as I understand how being so is important re one's healing and also in helping others.  I'm working on my contribution right now by doing what I can for myself in order to remain stable.  Is not easy getting out but I did see one or two good people on the road that did not try and run me over ... those two niceties I focus on and not hold onto all that other stuff.

Good luck with your own navigating re your own aims and the like.   

 

Re: Chronic & Complex Case | Certified BUT Unacknowledged

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