Hashtag #Blessed

a picture of carebears

Scott’s right. He and Jen are blessed to not have to negotiate the life of a disabled Australian, adult or child, parent or carer. He’s blessed instead with the opportunity to make that system better for all involved.

Such as for

  • the parents of a child with some delays looking to engage with early intervention services, not knowing where to start.
  • Kids entering the education system and still facing the assumption that segregated settings are a beneficial option
  • Young adults trying to move into the workforce and having to fight for specialised support to find and keep open employment, or fumbled into sheltered workshops where $2.50 an hour is legal and seen as benevolent
  • Older adults struggling to survive on the criminally low JobSeeker payment despite having reduced capacity in the eyes of the government. But not being allowed onto the more suitable disability pension as the assessments needed to prove your disability are financially and or geographically inaccessible

But Scott has wasted his chances to make life easier for disabled people across the age span. His government has cut and cut and cut funding available to public schools who educate the majority of disabled kids, overseen the slashing of NDIS plans, defunding of advocacy services, and the continued exclusion of disabled people from leadership and board roles. Scott’s been blessed with the results of various enquiries and royal commissions that recommend centring those with lived experience of whatever it is that needs fixing, from disability care and support, to aged care, to the experience of women employed in the same building as him.

They like to say Autistic people lack empathy, but aside from that not being true and us merely needing to figure out how the neurotypical world would like us to demonstrate it, at least we’ve learned from our supports, unlike Scott from his empathy consultants.

My Election Wishlist

scene from animal crossing

Welfare payments above the poverty line – I think we were all more than a little distressed to say the least when Labor revealed they had no plans to promise any rise in JobSeeker or other Centrelink-administered payments this election. It’s even worse seeing them fall back on the small raise the libs granted us when the covid supplement was removed and try to take some sort of credit for it. I did some maths, including the rent assistance, I’ll be getting $63 a day on the Disability Support Pension when it switches over (yes, my partner finally did his paperwork for it to show he’s not my financial keeper) when my application finally gets properly approved. Living it up. I mean it’s better than the $42 a day ($52/day or $733.70 fn, including $137.40 rent assistance for the $790 rent we pay) I’m getting currently, and there won’t be mutual obligations, but this is the pension that acknowledges that I’m not really capable of regular paid employment and it kinds should be at a rate that at least lets us scrape by, and not continuously fall behind?

Some actual steps towards slowing climate change. Like not opening new coal and gas projects or subsidising the old ones. Putting money into renewable tech and jobs and batteries. Something about realising that the extreme weather events are caused by our love of destroying the planet, and perhaps we should do something about it? I mean it’s not too late, despite how depressing it gets. But we do have to act soon. And stop making things worse :/

Something to be done about the huge out of pocket costs that stop people from accessing the healthcare they need. It’s all well and good to say there’s Medicare rebates for healthcare, but what’s the point if the waitlists are excessively long or you can’t afford the upfront amount? The rebates need to be more too, because even if we do find a way to get the upfront payments for out of pocket up front costs, there’s only so long that can be sustained for.

To be more specific – You can currently access 20 rebateable psychology (or mental health OT/social work) through the “Better Access” program. That might go back to ten soon, it might not. But it’s so hard to firstly find a clinician to see you, and they you’re up for $200+ per session before the rebate that’s about half that. We’re currently trying to find someone for my niece to see, but it’s even harder to find someone for kids, especially outside the NDIS. Before I went into the current public program I’m doing DBT through, I was seeing a mental health Occupational Therapist under the scheme after finding most psychologists to have at least a 6 month wait. And this is in Newcastle, good luck if you’re in a smaller centre.

Access to free assessments in order to access NDIS and DSP and any other gatekept government program. It’s wrong that you have to be able to afford the assessments in order to get into these programs that should be available to all who need them. Also, a return to needs-based rather than diagnosis based access. Back to looking at a person’s needs and goals and working to support them with that. Disabled people have goals you know, and don’t just want to subsist.

Housing. The rental market is fucked in this country. We need a huge spend on PUBLIC housing, that’s owned by the government and leased to anyone who needs it. Guess what, that provides jobs too! Rental assistance is bullshit, and the quality of housing is slipping towards being unsafe for tenants as it’s not safe to complain or ask for repairs as there’s someone else waiting if they kick you out. I don’t know the answers. But housing is a mess.

I’m tired, and there’s still a month to go.

What’s on your Wishlist this election?

Well, Labor, that was disappointing

I seriously wasn’t expecting to be too surprised by Labor announcing something magical like the Greens #88aDay, but I was expecting SOME sort of commitment to raise the rate of jobseeker or AT LEAST COMMIT TO A REVIEW.

but, no, Andrew Leigh confirmed it today to ACOSS that they won’t commit to raise JobSeeker and not even to review it, which is the promise they brought to the 2019 election.

https://www.theguardian.com/australia-news/2022/apr/12/labor-wont-commit-to-an-increase-in-the-jobseeker-payment

I’m counting my blessings to have been approved for DSP, but I’m still waiting on my partner to get his last tax return in and upload other profit and loss statements and his bank statement and we really need to scrap the partner income test too, because while I have a partner who is doing this for me, me getting a basic income coming through as a mentally ill woman who now is confirmed by Centrelink’s high bar to be disabled enough to not look for work, I shouldn’t now be at the whims of my partner, who is wonderful, but aren’t they all until I get really unwell, shit hits the fan, I’m hell to live with and he can’t uphold his part of the deal.

I’m not physically dependent on him for care, unlike the women who reported to the Disability Royal commission how their partner became their carer and they became dependent on them for finances, or care, for accommodation, for everything, and so weren’t able to report abuse because that would also take away their carer. Or in the case of mentally ill women it gets so quickly turned back onto them and you find yourself carted off to the hospital because you’ve called the police to try to find safety.

Those stories are harrowing and I don’t want to be that woman, I don’t see myself becoming that woman, but I want a social financial safety net so women(and men) who are in an unhealthy or abusing relationship can get out, be financially independent, can sustain themselves and their dependents, and not have been cut off because their partner earns too much and they won’t give you a cent, or you do get DSP or JobSeeker (at the lower partner rates so are down $50-$200 a fortnight because your partner should be looking after you). $40 a day at partner rate isn’t enough on JobSeeker for anyone, let alone in a crisis. $88 might mean the ability to keep up to date with bills, to have some savings, to at least not be laughed out the door when your payment including rent assistance is less than rent.

Labor, you’ve dropped the ball and those of us on welfare payments are scared and angry and upset and really hope you come up with something more optimistic for us in the next 40 days.

Please? I hate to beg, but this is where I am. Give us hope.

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

Back to face to face therapy – also don’t scare me like that Centrelink!

I did it! Made it into town, did my first face to face psych session in 6 months, first time I’d seen this therapist in person since the assessment 18 months ago, and yeah, did it.

Verrrrrrry zonked this afternoon, but let’s see what I remember of the day and I get going.

Didn’t sleep great, that’s a little expected, got up after waking a few times a bit after 700 and made coffees. Sipped on that, did the breakfast and meds thing. Now I’m wondering whether it was today I made Bruce toast with his second coffee? I think so, the bread was soft. Unless that was last night? Blur I tells ya, there wouldn’t have been coffee though last night, so I think it was this morning.

Drove to the station, walked down the stairs as the earlier train pulled in, so hopped on that.

Two stations in it clicked that I was meant to have a mask on. Whoops.

Made it to Newcastle interchange. Most of the toilets were closed off, but I didn’t actually need to go and the tram was there so I caught it to Crown street to walk through the mall and see how it was going.

Took some pictures of the changes, like to the old David jones building. Bought some cards.

Sat outside the post office, wrote in a card for my old OT whos report I think got me over the line for DSP. Then walked up the hill to the hospital.

Reloaded my vaccination certificate and the service NSW app. My third vax still isn’t on Medicare, I guess I should ask the chemist about that…

Went in, mask on. Receptionist – I said hi and said who I was, she wounded familiar from the phone. Some of the mental health receptionists have the best manner. Very mum-like but businessy enough. Some suck. This one rules. She makes me feel like my calls aren’t annoying . Always good for those of us with rejection issues.

Oh speaking of rejection issues, starting to feel a little like I have to come up with more problems so that my therapist doesn’t think I’m doing too well and says I don’t need to continue with the service. I mean it’s nice not to be crazy erratic, but I do have things to work on and I’m just getting into this doing things again.

So into the session. OMG so sweaty. Glasses fogging up. Had the window and outside door (to the balcony, old hospital all that) open for covid airflow reasons. but I’m this hot mess of SWEAT.

At one point he asked how I was inside, and honestly I wasn’t a mess inside, it was all outside for once. Still masking to high heaven. Wonder if that’s easier with actual masks or not. Time will tell. I don’t really try too hard with my short appointments at the Mater to get my antabuse, they see me as I come that day for that few minutes. And keeping coherent for 5 minutes is easy. But a 50 minute psyc session? Yeah I can do it on the computer. Easy. But I don’t want to. I want to drop the mask and therapy properly. I guess raising masking vs opposite action will be something I bring to the agenda next week. I need to bring more stuff so why not that? Also works into my working up to raising whether I’m autistic. As will telling him about the yellow ladybugs autism and adhd conference in June.

I know I should do it, at least actually get a professional’s input. Especially while have this access. But I’m scared he’ll think I’m so off target or I’m making stuff up or something. I don’t know. I still have to build that trust I guess.

He brought up the reminder that we were going to talk more about work options, I asked if I told him about my DSP approval, he said I hadn’t but he was glad I got it even though his report wasn’t helpful because he’s so set on DBT being amazing and me being a good candidate for change.

Which brings me to Centrelink and them calling me to upset me on the train on the way home.

As I wrote on FB to my sister

I have to provide bruce’s profit and loss statements, but they called me to tell me on the phone on the train on the way home today and it was a shock and I cried and didn’t get all the info and she said to call them back later if I wanted to check, but yeah. I got an answer on twitter though and theree’s a letting in the mail I can wait for

So yeah, have to do his income side of things. When the lady said why she was calling she said she was assessing my DSP claim,, and I was very shocked and very much thinking it was god to go. It took a few times to explain to me it was to approve me eligibility on the income side – ie whether Bruce should be my keeper because partner income and asset test crap. The phone dropped out in the Cardiff tunnel too which didn’t help. And THEN she said to just call back and she’d made a note on the file of what forms to complete and they could tell me again, and so i did after lunch and I wasn’t able to verify my identity with my voice and they weren’t understanding my responses and maybe I wasn’t that coherent by then? but I asked for operator then was told they were busy and to do it online and they hung up.

Thankfully I got an answer to my cries on Twitter. God I love the social media teams on there.

So I’m more than done.

I played Animal crossing and wore my Hello Kitty hat and shoes that came with teh Amiibo cards Yieki gave me. And I made pasta for dinner.

And I’m sooooooo tired.