I was just reading on your website that there has been claims of a scare campaign regarding this organizations work to ensure that appropriate psychosocial support services are available for people with mental health issues.
I’m currently quite unwell precisely due to the destruction of services and am not sure if I can write very well. But I’m also so frustrated…. as well as exhausted. Maybe if I can write about what I’ve experienced and you guys can use it if its helpful as a consumer experience for evidence that what is happening is genuinely harming people. Not a scare campaign at all! Well then it’s worth trying to get some words down in some way at least! Plus maybe it would help with my frustration with the system to write it all out! Because what’s happening has been incredibly poor (which of course is not at all an unusual experience for consumers in this area). If only people who have no real idea or experience… yet are making decisions about these things were more open being made aware of how their decisions effect real people hey!
I was a client of the PHaMs program for a number of years before the funding was cut. It was the first program that I had been a part of that was actually helping me get better. Though it was never enough support for me to really get well, it was instrumental in helping me become more stable and end the cycle of hospitalizations that had been my entire adult life. I have a dissociative disorder that wasn’t even properly diagnosed until I had been languishing in the mental health system for 14 years. I have had my fair share of pretty horrible experiences and few positive ones in all this time. I was well used to being treated as nothing but a waste of time and space. This has always been my norm. But then, within the PHaMs program I encountered the person centered and trauma informed care approaches and felt like, for the first time, i was being seen and heard and actually assisted to build up rather than being drugged to the hilt, dismissed and hurt even more.
After so many years of searching for a way forward i had finally found both a decent therapist who actually recognized and properly diagnosed me and also became part of a program that was designed to empower people. I was finally making progress.
Then the NDIS happened. The funding of psychosocial programs such as PHaMs just should never have been reallocated to the NDIS. This decision has wrecked a very good service and caused massive stress to both the clients and workers. It’s opened up an even bigger chasm and lack of services for people with mental health issues.
I have experienced at least 6 months of dwindling support prior to the date at which I finally lost my peer worker in the middle of last year. At that point I was still supposedly receiving support to assist with my NDIS application process via PHaMs. This has not been possible except for a basic support letter being provided. The branch i am still a client of was reduced to only two workers and they have been way overstretched this whole year. Even once some funding was reinstated i have hardly received any assistance and am definitely suffering because of it. I have been receiving a visit about once a month on average which in no way meets my needs. There has been no way that there was enough resources in whats left of PHaMs to adequately support me to organize the NDIS application. PHaMs has only been able to assist me with getting to some medical appointments and occasional support for shopping and social support.
At the end of last year i was so desperate I attempted to access more help via a state based mental health service but this came to nothing except a suggestion to self refer to another soon to be extinct program. At the start of the year I was accepted into the PIR program via self referral. In the time since I was accepted into this service i have met at least four different workers (as they have no job security given the funding for this program ends on the 30th of this month and have been moving on to new jobs one after another). This is extremely difficult to cope with as a consumer. Thankfully I have had a worker who has almost got my application ready to be submitted now. But then of course she will no longer be able to help me any more in two weeks time when the program ends and she’s losing her job.
If i don’t get accepted into the NDIS i still have no idea what the continuity of care services will be. As far as I am aware this has still not been decided upon yet. Even though PHaMs was basically destroyed for any decent support a year ago and PIR is ending in two weeks time. THERE HAS NOT BEEN CONTINUITY OF CARE as was promised. If i do succeed in accessing the NDIS i have no support worker i actually know and trust who can help me navigate through the planning process and transition into that scheme. IT IS SO STRESSFUL. My mental health has been so bad these past months that I should have gone to hospital a number of times but it is just so traumatic and retraumatising and really no help. I’m simply trying to survive everything somehow by myself at home. I have been such a burden on my psychologist that I’ve almost ruptured that relationship a number of times this past year and although I am still seeing her at this stage, I honestly don’t know if things will continue ok.
I have been seeing my GP much more to try and get by as well. But I feel so exhausted and desperate. Very depressed and hopeless as well. The idea of having to cope with meeting a complete stranger to be assessed etc for the NDIS if that does happen in the next few months is wholly overwhelming to contemplate.
The not knowing what support will be available if im not accepted is also really stressful…and the very real possibility that what ever gets provided as the ‘continuing care’ arrangement is not actually going to be sufficient or suitable is yet more stress. The last information that I heard was that there was a push by government to make all support only via group activities. This is totally inappropriate for me and not something that I could engage with.
All in all things have been extremely difficult and my health has really deteriorated to the point where I’m at risk of self harm constantly yet again. It’s a horrible place to be at.
It is my experience that it is true that very few people are being accepted into the NDIS from PHaMs. Apparently rates are better via PIR so hopefully this helps me. But the NDIS is this massively complicated un transparent system that I’m actually really afraid to get mixed up with. It is very likely the only hope i have of ever getting enough support to actually recover enough to become in some way productive in this world but it is also yet another system that has very little understanding of best practices for trauma survivors. I’m so tired of being retraumatised in the attempt to find help. The application process is so inappropriate for mental health issues and is beyond many of us to navigate alone. It has been simply awful to have to put together evidence of deficit and disorder for it. Initially we were told that we had choice as to whether we wanted to test eligibility or not but then we discovered that you are not actually eligible for what ever will be the ‘continuing care’ unless you have tested eligibility and been rejected. This is not ‘choice’ and ‘control’ for those with disabilities.
I also have real problems with the way i have to prove myself incapable of ever recovering to be eligible for any decent levels of support that might enable me to finally get a life instead of simply struggling to survive. Hope is already such a difficult thing to have in the face of mental health issues.
There are so many people who need this kind of rehabilitative support and so little support available already in this area that it really would have been a smart decision to keep the existing services going. What should have occurred is that those who were long term currently taking up spaces in the existing services that could really do with more care and support should be assisted into the NDIS or something specific that’s actually set up for mental health rehabilitation. Then those who are struggling without any or very limited services would have been able to fill those spots and get more help to progress in their recovery much faster and hopefully become functioning members of society and no longer reliant on government payments. If nothing else it should have been managed so that there was not the degradation of service for people like me.
I am a prime example of someone who has potential to be able to function so much better if I was adequately supported and able to access treatments and therapies to try and heal. Im always going to have issues because of my past but I am sure that if i had been given the correct treatment and intensive therapy and support back when I was 20 and first attempted to get help, then I would not have had to suffer so much and be a recipient of the Disability Pension all these years.
Instead my life has been such a difficult struggle and i have been unable to function to contribute to society thus far. It is so frustrating and incredibly lonely too.
I don’t know if this writing will help your organization fight for people like me how you are trying to. Thank you all by the way. Just maybe someone’s story will help a little bit to make the people in power realize that we are people not numbers. What they decide has real ramifications on people.