Category Archives: disability

And Liptember is OVER!

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So, Liptember is over for another year, and I’m happy that I met my fundraising target, and that I wore lipstick every day, and I tried a few new things, but I’m also tired. Why tired? Well because people around me are. Because while it’s fun to do fundraisers, it’s hard seeing people around you not being supported with their mental health. People accessing all they can – the Medicare rebated psych sessions, medications, GP visits – but that not being enough to make any headway. My sister will feel I’m calling her out with this, and while I am, it’s also half my Twitter feed and a bunch of my Facebook family and friends. They do what they need to to tread water, they maintain, they get things done, they keep on being alive, they keep doing the appointments they have to, to work days, the welfare obligations. But they don’t really get ahead.

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I’m certainly not ahead either, myself, I just managed to get myself to a point where I could convince the government that they were better off giving me DSP that trying to get me into a job that I might just throw away at the first sign of trouble. I had the privilege of being able to front up the cash for private psych and OT, to be able to get into the therapy program that made a difference but wouldn’t “fix” me, to get the reports from the private OT that got me over the line for DSP. So that now I can jump in and out of the real world as I see see fit with a safety net of not losing my DSP backup because I tried and failed at something.

I’m not yet at the point of wanted to do paid external work, but I’m participating more outside myself – I’m more involved with my local Greens’ group and the events and meetings they have, I’m more active online, I’m experimenting with more social media avenues and with Twitch streaming. I’m dabbling around to try and find what I like, and hopefully being useful in the meantime. I’m doing my e-girl and activist things and I really like that. Those things excite me, being online, trying to make a difference, either together or separate, but also just figuring out me.

While also being able to be there for my partner and my sister and their kids. Helping my stepkid get into the right therapy, taking my nephew and niece to appointments, babysitting the little ones, being a sounding board for my sister, making my partner lunch and dinner and keeping  a clean and ordered house so we can relax together in the evenings. Playing with my dog, getting the kids used to a dog. Helping the children learn to be themselves and grow and explore their lives.

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I’m doing what I can and mostly what I want to do and while I’m tired, I like it. I like me.

You can still donate til the 15th for my Liptember, and I’ll wear the lippy of your choice one day 🙂 I still don’t have yellow and threw out a few over the month, but there’s still way too many to choose from.

Autism Acceptance, Awareness and Awesomness Day

I will preface this post to say I don’t have a formal Autism diagnosis, and I’m trying to be brave enough to raise it with my DBT therapist (maybe this is the week) but I do believe in this world of mis-diagnosis and gatekeeping of diagnoses by “specialists” with big books, self-diagnosis is valid. I’m still pondering if I’m #actuallyautistic, either instead of or alongside my Borderline Personality Disorder Diagnosis, and learning about the experiences of other women and girls growing up without or with an autism diagnosis hits me in so many feels – ie I could be that little girl being misunderstood, trying to fit in, trying perfection to please others. Anxious and confused but somehow masking and muddling through, despite the emotional pain.

Having a Speech Pathology qualification and experience has NOT helped me in my understanding of my possibly autistic self. Too much medical model, experience being a diagnosis gatekeeper or at least working amongst them, working within the DSM, and the deficit models that diagnose because of trauma induced behaviours. It also moulded me into not believing Autistic adults were as capable as many of them clearly are, again working with people because things are going wrong in their lives, often to the inconvenience of caregivers or authorities, and not because, actually let’s work towards their own goals.

The Yellow Ladybugs conference last year focussed on the mental health of autistic girls, with plenty of sage advice from autistic women who were once confused little girls like me, trying to understand and fit in with the world around there. That conference showed me that autistic women could be psychologists and teachers and speech pathologists, but it took a lot of self-awareness and self-advocacy in a professional sphere that very much has an us and them feel at times.

I worked at a specialist autism school at one stage in my life. I think if I had the understanding of myself that I do now, I would have been able to cope better (bloody hell schools are over stimulating nightmares at times, let alone the social demands!) and would have been a better speechie, better at my job is all aspects. Unfortunately at that time in my life I was not doing very well at all mentally, it’s around the time I got my BPD diagnosis and had my first hospitalisations around self-harm. So yeah, If I could have my time again? I don’t actually know how I’d handle it…

But I’m working through my journey. DBT is going well, I AM feeling more skillfull, I can handle more of the things the world throws at me, even though I’m really only just emerging into a living with covid world where I have to interact with people in person and somehow backup and do it all again. My spoon levels fluctuate wildly, and I have to attend to my downtime, so I can be present when I’m wanting to. We’re doing the interpersonal effective model, and god doesn’t it feel like a social skills training for autism, eye contact recommendations and all. I’m a bit skeptical of parts, but I give everything a go, and apply what works for me. I hope the others in my group can too.

So this Autism Acceptance month, I’m learning more about myself through all of your experiences, so please, share your stories, I’m thankful. I wish they were so painful at times, I’m here with big hugs and virtual stuffies and weighted blankets for time out when you need x

My DSP was approved (aka why JobSeeker is not a safety net)

You’ve probably heard me buzzing about on Twitter about how I received a positive outcome on having my DSP rejection reviewed. I’m getting DSP baby! I got the call at 5.15pm yesterday, smack on 49 days since the review letter said I’d be getting the decision in that timeframe. A phone call from an actual person too! I guess unlike a rejection I won’t yell at her. I squealed a little I think. A friend asked if I cried, but yeah not yet, just relieved to have it approved.

I’ll probably (and already have) go through some guilty feelings like I don’t deserve it (I do) and I’m giving up (I’m not) but yeah, riding high for now! Just sceptically keeping an eye on myGov to make sure they change it over, oh and that I get my backpay.

Some people (like my psychologist) have “checked in” to make sure that getting disability doesn’t mean I’ll be giving up on getting back to work one day. For those people, I reassure them that being on DSP won’t make me stop wanting to get back into paid work, or unpaid work using my many skills, and will in face HELP me to get back into that state. How so?, you may ask, if you’re unfamiliar with how being on the lower JobSeeker payment and having mutual obligations actually creates MORE of a barrier to gaining and maintaining employment, particularly for someone with a chronic illness that fluctuates and is exacerbated by the whole process…

I had started going on a rant about Work for the Dole, but having never done it all I can truly say about THAT is thank flying spaghetti monster that I’ve never had to. If you’ve done it, you might want to help the Antipoverty Centre in its campaign to Abolish work for the Dole by contributing to their survey of WFTD experiences or if you have the means, contribute financially to the GoFundMe.

So, why am I “completely stoked” to have been approved for DSP and not be on JobSeeker? What’s the difference, aside from the payment amount (both of which are below the poverty line and need to be lifted, but JobSeeker much more so)?

The obvious first one would be that I do no have to apply for jobs or complete those mutual obligations like studying or going to meetings or volunteer work in order to get my payment each fortnight. If I was under 35, I could still have mutual obligations though for DSP, which is a whole other kettle of fish. As we see by story after story , Disability employment services are a very expensive way to police people with acknowledge disabilities and illnesses that impact their ability to find and keep work. Generally you get sent to a DES provider rather than a regular mainstream JobActive provider after you’ve submitted medical certificates to Centrelink to get some time off from your mutual obligations. Because you’re more unwell that usual. At some point the exemption doesn’t get approved, because your GP ticked the wrong box, or said it was a permanent condition, and you go through an employment services assessment (Esat). This is a chat over the phone with a Centrelink-employed health work like and Occupational Therapist, and they determine how many hours a week you should be able to work based on this interview. This is given as a range, from 0-7 hours where you’re basically given an extended mutual obligations exemption for up to six months with regular check in appointments to make sure you’re still alive, to 8-15 or 16-30 hours, in which case you’re referred to a Disability Employment Service, who we’d all like to think specialises in getting disabled people into SUITABLE employment or study and has some knowledge or education around disabilities, illnesses and workplace supports.

(I hear some of you cry-laughing, and I can just tell you’ve been through DES at some point. The rest of you stick with me?)

So, if I have employment prospects, why isn’t going to a DES with JobSeeker allowance going to be helpful? Why won’t this be a suitable way to gain and maintain employment?

Disability services company pocketed nearly $1m for barista course lacking basic equipment, inquiry hears

Let me paint a picture of what it’s like looking for work with a mental illness (however I’m sure similar principals apply with any disability, particularly as most people fluctuate in their day-to-day ability to perform to the standards of the world without an illness…)

Hi, I’m Fiona. I have borderline personality disorder, I have a degree in speech pathology but I haven’t worked in the area in 8 years and I no longer have registration. I also have postgraduate qualifications in inclusive education. I stopped working as a speech pathologist due to my mental illness and its impact on my ability to be a reliable worker. When I’m not doing well, my planning and organisational skills go out the window. I become very unreliable. I’m erratic. I’m not going to outline everything here, but I’m not a good employee. Maybe I still show up to work, but it’s very hard to concentrate or to be around people long enough to get the work done. I may have started having problems with alcohol or self harm again. I may just head to Sydney on a whim and call in sick. I may show up work but not be in the condition to work, function, or be responsible for others safety let alone my own.

I’ve had many lots of therapy in the last 20 years. Psychology focussing on anxiety, CBT, medication, throwing myself into exercise (running 5km every morning DOES actually help with my anxiety), a 2 year block of weekly therapy that was thankfully covered by the government doing the conversational model. At the end of that last block I was working with a DES provider to try to get into some sort of work. We went with Disability Support/ carer work.

This DES provider worked with me to work towards getting a job. But there was always the threat of being cut off from payments if I didn’t tick the right boxes, submit the right forms. That does wonders for anxiety filled perfectionists with a ticking mental health problem that’s wanting to take you down.

I figured I could do volunteer work, at a special school, get my confidence up, get me some references. That all worked nicely. Also I got to use my speechie skills in classrooms again which was actually a very good use of my time.

By that stage I’d already been applying for jobs for about a year (I did interviews for so many Speech pathology jobs, locally, in Tamworth, Sydney, Bowral, Canberra, by phone to Albury and Broken Hill, and ones in the Northern Territory and the Pilbara that came with contracts and sign on bonuses. Some went okay, but I was never the top candidate, or some were uncomfortable with the gap in work that wasn’t due to having kids, a couple of interviews I ran out of in tears, and at least two I hung up the phone on. it got harder and hander and I was relieved to be told it was okay to stop trying for those)

But we went all in on the disability support jobs. Applied for all the companies in town, had a few interviews, I actually REALLY liked the group interview process for one, and managed to show off my knowledge and skills in that environment, only to shake my way through the individual one. I got to the point of doing a medical with them, but I had to do a couple of rounds of that to show my mental health was good enough… I got offered a different position elsewhere and took that one on. Casual. It was casual for a year, but I basically had as much work as I wanted.

I probably should have been getting post placement support from the DES provider but I don’t recall hearing from them again.

Alright, so I had a job. For four years. We won’t go into the process of losing that job, but it was mental health, alcohol misuse, and a WHOLE bunch of anxiety. That employer was so supportive to keep me on, and we tried to work with each other to make it happen, while I was accessing therapy and support, but it wasn’t working for me at that time, and I really feel like I let them down, but then I also was letting myself down by continuing to pretend I was okay.

Covid has been a bit of a blessing for me. The coronavirus supplement, having mutual obligations suspended, being able to access services by telehealth, all a blessing in disguise. I’ve had a wonderful GP who was willing to write me medical certificates. And I’ve answered to phone calls and done the reporting to Centrelink as they wanted, and not really had any way to step out of line. This would have continued to mid-year when I was going to be reassessed for job capacity and would have probably returned to the DES system with a 15 hour a week capacity assessment, and have to start working with the requirements again.

I’m happy to look for work when I’m ready. Not now. Now I’m not ready, I’m still doing hours of therapy each week, I still am working on meeting my daily standards as a human being. But I’d like to look for work (paid or unpaid) that uses my skills and interests and now this can happen in my own time rather than following the schedule the DES provider has to work under to meet their KPIs.

Currently I’m required to answer the occasional phone call, and to report mine and my partners income each fortnight in order to get paid. I’m pretty reliable at doing that, though I have been late on the reporting at lease once which meant waiting another day for my JobSeeker payment to land. My fault, but I forgot due to being overwhelmed with other aspects of dealing with existing with a mental illness, and did not treat myself kindly for the mistake. I’m my harshest critic…

I’ve been doing well in therapy, only needing to take a step back when I had Covid myself. I still made it to the group sessions by telehealth, but cancelled a couple of the individual ones as I wouldn’t be able to participate properly even by teams. So, I’m pleased with that , and myself.

I get scared when my psych brings up work and trying to come up with goals around that. I have some vague notions of what I might like to do if I can get myself able to work to a certain standard with the right supports from the employer and my other supports to stay well while I’m there.

Getting DSP means I can do this in my own way, in my own time. I have a little extra money each week. I don’t have the threat of having it cut off for failing to meet a target set by someone paid by the government to police me. I CAN choose to try getting a DES to support me, and there’s a “couple of good ones” in my area that I’m probably going to talk to. But I won’t be with one not of my choosing. I won’t have to do anything to make up hours that isn’t in my interests or that doesn’t help me with my skills or confidence. I can apply for as little or as few jobs that interest me. I can quit a job that isn’t working out and not face suspension of my payment. I have more leeway in terms of how much I can work without my payments going down or being stopped because I’ve been going well for a longer time. More of a safety net to fall back to if pushing myself starts doing more harm than good. I’m not there to meet someone else’s quotas, for a business to refer me to their education wing for them to earn a bonus and for me to study something meaningless outside my cares or my skill level.

There’s always this threat on JobSeeker that you’re going to do the wrong thing, knowingly or unknowingly, and be cut off from your only (woefully low) source of income because computer says no.

I know it’s not all rose coloured glasses from here, but being on DSP is a weight off. A chance to be a little free-er, to be able to take more time to work on myself, being and doing the things I want to, not being chewed up by a machine that’s not working in my best interests.

Applying, and being rejected for, the Disability Support Pension

So, you’ve been playing along right? I’ve been on JobSeeker since the start of the pandemic, working through some of it, getting some JobKeeper as well, before I lost my job as a disability support worker in July due to mental illness and substance use issues that interfered with my ability to care for others, let alone myself, safely. I have Borderline Personality Disorder.

I’ve had exemptions from looking for work most of the time I’ve been on JobSeeker and Newstart over the years, temporary reprieves from applying for a job a day, and being rejected for most, while also attending meetings with JobActive or Disability Employment Service (DES) providers, and anything else they send you to. I had a DES provider 6 years ago that helped me build my confidence and reference base with volunteer work with a special school, using my speech pathology skills and “passion for inclusive education” whatever that means in a segregated education setting… Anyways.

I got an exemption from job search straight after I lost the DSW job, a medical certificate and the the Job Capacity assessment giving me an exemption til March THIS year. it was possibly going to be extended but things happened, I drank over Christmas and summer and ended up in hospital with a Seroquel overdose attempt in February. I asked the hospital staff at that time if they though DSP or NDIS was worth applying for, and they flat out said no, they have severely ill people, way worse and psychotic than me, and they struggle to get them any disability support. So I took the medical certificate THEY gave me, and that covered me til after Easter, when I started engaging with the Salvos DES provider locally.

Sarah’s lovely. She’s based out of the Central Coast, only coming up to Toronto fortnightly, so I saw her then, or by phone. With a pause with Covid again of course. When things started to look like I needed to do job search again, I got another exemption. I’d been seeing a private therapist for a year now doing DBT skills, and she’d gotten me onto the waitlist for the Centre for Psychotherapy again, to do the full DBT course this time, as when I’d been with them 6 years before I did individual conversational model therapy, which was okay, and I ended up getting a job and a boyfriend and all that, but it was so very hard and had obviously worn off since! Front that exemption, because it was determined that they couldn’t actually give me a temporary exemption because my condition was permanent, and they got me to do a Job Capacity Assessment with one of their psychologists by phone. She said I certainly shouldn’t be working at the moment, particularly since I’d be starting intensive DBT soon, which involves a weekly hour individual session, a weekly 2.5 hour skills group and homework. Jody, I think her name was. She then went on to say that they best thing would to be to apply for the DSP, and that I should get in, since she figured all the years of therapy I had done before would count for the treated and stabilised criteria and that I hadn’t been working for a year already and would unlikely be working for another one. She I did. I put in the online application that day through MyGov. I then set about getting the letters and reports they wanted – discharge summaries from hospital, referral letters, letters from the psychiatrists at MH&SUS (Mental Health and Substance Use Service) where I’d been involved in their programs for over two years, a MASS of paperwork from my GP, since they don’t just get to fill out a form any more.

(on a side note, my GP told me on our phone appointment on Monday that he’s moving to Melbourne! I shed tears, been seeing him for 6 years. I’ll move to another doctor in the practice, but got it’s hard when you’ve found a good one to let them go!)

So, I get the required paperwork in on time by their due date. Then, I wait to come up for another capacity assessment. Meanwhile, I come off the waitlist at the centre for psychotherapy and start with the psychologists there. I get a date for the Job Capacity Assessment, it’s a Friday and then they change it to the next one. They advise me to get a letter from my new psychologist to add to their evidence. I make that phone call. THAT was awkward. He writes me one outlining what the treatment entails but tells me he couldn’t write a letter than supported the application as he believed that the therapy would have the intended effect and I would be way more capable of working or studying by the end of it. I also get a letter from my case manager at MH&SUS outlining my care and participation there. Cool.

The day of the phone assessment. 9am Friday November 5th. I take the call in my backyard, overlooking the creek. The assessor seems knowledgeable about substance use disorders and BPD. She’s less confident about my previous therapy counting as fully stabilised and treated as that was 5 years ago, and I’ve just started more therapy. The call drops out several times – could have been my phone reception or hers, she’s calling from up the coast somewhere as she refers to Newcastle as “down there”. I do the describe your worst day, what sets off my emotional overreactions, what causes me to self harm, what gets me suicidal and hopeless. Fun times.

I confirm that I can do the basics. I can shower, dress, cook, shop. I’m doing therapy. I’m literate. I’m intelligent. I have a partner that helps me, but I do a lot independently. Hell I’m doing this phone call alone because talking about this stuff is terrible, but I’d rather not do it in front of family, and friends isn’t really something I have, and I am honestly my best advocate. I’m capable of much, but everything I do do means one other thing gets left undone, or if I have a bad sleep, or someone looks at me the wrong way or I have an argument with a loved one, I crumble quite easily still. Hopefully this therapy will help with all that. We’re starting Emotional Regulation in the new year, have just done my first trip through Distress Tolerance. So I’m learning and applying more skills already, and I’m glad I have that for Xmas this year. But it’s a long road ahead.

The assessor (he name is Jo too? Maybe?) tells me she will be calling my psychologist and case manager and maybe my GP for more information. I’m nervous about this. My case manager says she got the call, and they spoke about how anxious I am, and how I’m doing well at the moment, but I need to stay working hard to stay sober, and I’m doing all I can with the weekly contact with her and daily Antabuse tablets.

She calls my new psychologist. We’ve been working together for nearly two months now. We met in person last year at my assessment, but we haven’t seen each other in person since starting therapy. We’ve set goals, talked about study, work, travel, politics, friends. He’s extremely optimistic about my future and keeps telling me how well I’m doing and that I’m grasping everything so fast since I’m smart and I’ve also got private therapy to kick start me before coming to him. He tells the assessor the same thing. Actually, he ignores her messages a couple of times because he knows that his evidence will all but certainly doom me to be classed as treatable and in treatment and so not “fully treated and stabilised”. Yeah. Can’t get anything past time.

Personally, this is putting a LOT of expectation on me, and sometimes I do well with a bit of expectation, but often I crumble. it’s completely a BPD thing, everything seems peachy and then the chaos demon comes out to play. That’s why the crisis survival skills are about literally surviving, not dying, and not making things worse in some way while in a heightened distressed emotional state. If you can ride it out, bide time, not make things worse then you’ve actually made things better, since you can go back to your regular programming and continue your life without having lost your licence or cut yourself, or enraged a loved one, or thrown yet another phone in anger.

Now we wait. The assessor has all the information. She’s state she will recommend a LONG exemption from mutual obligations while I’m undertaking DBT as it is such a commitment of time and mental energy and being able to completely focus on that, and work at my own pace towards any work or study goals with my therapy team will be more effective than having a DES provider hovering over my shoulder asking me to tick more boxes.

I get some information trickling through, pointing me to a rejection of my DSP application. The first is getting an appointment for my DES provider to call me on the 8th of December (my application is due for a judgement by the 5th). The next is the letter telling me I have been assessed as having reduced capacity. I also get a statement outlining my JobSeeker payment amount from December 16. Getting the hint here guys, just send the official rejection through already!

I’m checking my app several times an hour over the coming week. I try to apply some of the therapy skills to the situation, trying to accept that I need to wait for them to make or publish the decision, that they technically said the “estimated” completion date was Dec 6, that I’m not able to change anything by anxiously and obsessively checking for an update.

Close of business Friday Dec 3. No updates. I also check on MyGov. Nothing there either. I guess I wait til Monday?

No…

6pm, Sunday December 5, I get a text through

Oh shit, better check it hey? I call on Twitter and my partner for moral support.

Computer says NO.

Am I surprised? No. Disappointed? Yes.

I was never going to get 20 points in a single category on the Impairment Tables as reviewed by the Gillard government in 2011. These tables are used to rank capacity of a person to take care of themselves and have little to do with work. By asking whether I can feed and dress myself, or shop independently, you’re not actually assessing my ability to obtain and keep employment, no matter now you twist it. They might actually be more appropriate for NDIS access, but assessment for that is a whole other kettle of fish designed to weed people out who need support but can’t argue their case.

I was hoping to get offered DSP on the basis of being unable to work for two years, along with them taking into account that I’ve done millions of therapy over the years and to reach a point where you could actually call someone with BPD fully treated and stabilised is such a vague notion and that’s exactly what they rely on. I KNOW I’ll be doing psychological therapies on and off for life. Hopefully I get breaks where I can be a bit more independent, but I fully expect to have mental health care plans every year because those ten subsidised sessions are a bare minimum for maintaining my mental health, because a session a month to ensure I’m on track and to have a professional to guide me through life is probably less than needed when you put it like that.

So, where to from here?

Well I’ll still be getting JobSeeker. I have a partner who is doing the NEIS program (edit Sat 11/12 just found out his payments for that ended last month, so no guaranteed income from that allowance anymore) and starting his own business car and boat detailing, but that’s still in its early days, so I get the couple rate of JobSeeker, $50 less than singles, and between us I only get rent assistance, because of whatever box it was and so I get the maximum rate, but that’s still minimal. We’re luckier than most, I have family support to pay the rent too, so we’re not going to be booted out, family agree that it’s better for all of us if they help me pay rent rather than ending up with my living in the back shed again, cos that’s not great for anyone.

So, I get JobSeeker payment. And I have an exemption from mutual obligations until June 15 2022, which we all know will be here before we know it! The DES provider will call every couple of months to confirm that I’m still attending therapy and am still alive.

But I don’t know if I’ll appeal, the only grounds I could possibly push on is that between losing my job and being able to recommence job search is going to be at least two years, and not guaranteed that I’ll be ready then? I WANT to work, I’ve been well conditioned to want to be a functioning member of society even when I fail at adulting over and over. I want to use my brains for the good of the world, whether that’s utilising my speech pathology degree and masters in inclusive education, or training further, or getting involved more in politics or lobbying, but I need to get mentally well first. I need to be able to take on more than the basic activities of daily living without returning to wiping myself on alcohol (more than 9 months sober atm) or sabotaging my relationships. I think DBT will help me with that, but I need the time and money to be able to focus on getting the most out of it. And I think DSP would have provided that and set me up better to work part time after therapy is done, but I’ll muddle through, as we all do.