Let’s look at the Draft National Autism Strategy

So it was Autism whatever day yesterday, so the government got to announce what they’re gonna try to do to make sure there’s no immediate Autistic Uprising. One of those things in Australia was announcing the Draft National Autism Strategy, which I’m going to read through and react to here.

Before I read it, what do I want?

  1. Timely, affordable assessment and diagnosis of Autism and related conditions like ADHD. Ultimately free to the person being assessed, paid for by the government in full, not by crowdfunding. Preferably without an upfront cost that needs to be claimed back. I ‘member the olden days (early 2000s) when kids could get assessed and diagnosed free, and sometimes even adults could.
  2. Support for teachers and schools to include Autistic kids how they need to be included to learn. The feds will palm this off to the states, but schools need to be supported to include all kids in their local schools. They should be provided with the staffing and physical resources needed – space, suitable classrooms, flexibility in policies around attendance and “discipline”.
  3. Family support. Why is everything such a struggle? Recognition that Autistic kids probably have Autistic/ADHD parents and siblings. Whole family approaches to providing supports and funding, not making it a fight for everything, trusting that people know what help they need, but also presenting them with options if they’re not sure where to start – NDIS is too gatekeepy with new families having to ask for specific things that they need but don’t know exists or that they’re allowed to use their funding on. I miss the early intervention social workers I worked with in Canberra who knew every support available and how to get families into these.
  4. Mental health supports across all ages. Basically unlimited psychological supports that people can move in and out of as needed and not just when there’s a crisis. Suitable crisis care – crisis care that actually acknowledges Autism provides guidance on how to get support for that as an underlying thing, rather than just treating the apparently borderline personality disorder, eating disorder, suicide attempt or addiction.
  5. Support to get financial security. Money to start businesses because we’ve probably got good ideas, support to learn how to do the business parts so those ideas can be sustainable. Mentorship – whether in large and small workplaces or in our own ventures. Requirements for government agencies and businesses to understand us and accommodate our needs, and that that is different for each person. You think we’re the rigid ones? We just tend to know after awhile what works for us. Of course I’m gonna say welfare payments above the poverty line, because things don’t always work out and a true financial safety net means not starting from scratch if we go into burnout or have a mental health crisis.

That’ll do for now. *saves draft* let’s look at this thing. Commitments The commitments relate to areas of Australian Government responsibility. Feedback from the community on issues relating to states and territories has been shared with state and territory governments. In any areas of joint responsibility between the Commonwealth and state and territory governments, the Strategy will guide the Australian Government’s engagement with jurisdictions. Social Inclusion 1. Improve understanding of, and change attitudes towards, Autistic people across all of society, through: a. Greater public education and awareness including a better understanding of autism within workplaces, and with a focus on health, education and the criminal justice system. b. Increasing visibility and representation of Autistic people in the media, sports and the arts. c. Increasing accessible and sensory-friendly public and online spaces. d. Increasing the capability of advocates and advocacy organisations to challenge and reduce stigma of autism. 2. Increase opportunities for social connections and peer support. 3. Improve Australian Government service delivery, communication, and information to meet the needs of Autistic people. 4. Ensure consideration of the needs of Autistic people in future amendments to or reviews of the Disability Discrimination Act 1992 (Cth) and associated disability standards. 5. Improve the safety and welfare of Autistic people through the reduction of all forms of discrimination, violence, abuse, bullying, vilification and exploitation.

Of course it starts with reminding us it’s only about what the Commonwealth government wants to do and that while they’re gonna put more responsibilities back on the states, they won’t make them do particular things in return for funding and good luck to you.

Social Inclusion: Ooh good it includes the criminal justice system as needing to better understand Autism. Obviously we want help before that stage in education and school.

Visibility in media – so more characters on tv, or actually autistic actors or exploitative ABC reality shows? I’m curious about how that one about the ACCR autistic journalism cadets is panning out :/

Sensory friendly spaces – I SWEAR the Services NSW has their radio up  deliberately loud outside the quiet hours. Can we just ban commercial radio in public settings? And have Coles radio on low enough that it isn’t painful? more benches in quiet places where I can sit with my shopping til it’s bearable to go back.

Capacity building for advocates – um, fund advocacy organizations, an not just the ones who tell you what you want to hear? And not just around stigma, but about supporting people to access your services, get your funding for therapy, fight your tribunals. And fund legal aid.

Connections and peer support – how we want it, give us the money to run lego and minecraft and flower arranging and train spotting and and anything groups, don’t give it to neurotypicals to babysit us. Train Autistic audits to support younger Autistics and run peer support.

Legal stuff – enforce the antidiscrimination laws we already have, actually penalise people and businesses if they break those laws. Stop letting them please financial hardship – start with government agencies hey?Economic Inclusion 6. Increase meaningful employment opportunities (including business ownership, self-employment, entrepreneurship and social enterprise) for Autistic people. 7. Support employers to hire and retain Autistic employees through improving the accessibility of recruitment processes and fostering workplace environments that are safe and inclusive for all Autistic people. 8. Improve the supports and services available to Autistic people to ensure they have choice and control over their education and careers. 9. Increase representation of Autistic people in senior and board positions to promote people as visible role models. 10. Improve inclusive practices and the quality and accessibility of advocacy resources for Autistic students across all education settings, and their families, carers and support networks. 11. Build on commitment 5 Improve the safety and welfare of Autistic people through the reduction of all forms of discrimination, violence, abuse, bullying, vilification and exploitation to specifically focus on Autistic students in all levels of education.

Economic Inclusion: All great ideas. But they all need enforcement when they are legal requirements. ACAB, but perhaps an Autistic-led way of enforcing the antidiscrimination laws and educational requirements and so forth? They also just need to give us more money and trust that we generally know what we wanna do with it. Welfare above the poverty line as a true safety net. The right to housing. The right to education. Human rights.

The first one about supporting Autistic people to have their own businesses. It needs to go further than a year of the NEIS Centrelink solo business program that doesn’t actually give you any money to start your business. Grants for Autistic people to start businesses, to employ others. Sometimes we just need to be supported to include each other.

iagnosis, Services and Supports 12. Consider the use and consistency of current identification screening, outcome and diagnostic tools. Work with relevant professional bodies to develop a set of standardised co-designed training/professional development and resource materials to support professionals involved in the identification, assessment and diagnosis of autism to improve the experience, and quality of this process for Autistic people and their families and carers. 13. Develop a set of best practice resources to support Autistic people and their families, carers and support networks through the identification, assessment and diagnosis process. 14. Explore ways to improve access to primary care, including through the Medicare Benefits Schedule (MBS), to: a. improve quality health and mental health services for Autistic people, with a focus on continuity of care, and b. explore ways to make Autism diagnosis and assessment processes more timely and accessible. 15. Consider early screening and identification arrangements, and improved access to health professionals.* * Consideration is to be given to how this commitment links with joint work being undertaken by the Australian and state and territory governments as part of Australia’s Disability Strategy 2021-31 and in response to the Independent Review of the NDIS. Details on work to meet this commitment will be developed in Action Plan/s. 16. Improve access to quality, timely, neurodiversity-affirming and equitable supports and services for Autistic people, including for people living in rural, regional and remote areas. 17. Encourage greater representation of people with lived experience in delivering supports and services to Autistic people. 18. Develop a set of best practice training and resource materials for people providing services and supports to Autistic people. 19. Explore the feasibility of a decision-making tool to empower Autistic people to make informed decisions about all areas of their life. 20. Work with states and territories to improve service integration between the NDIS, foundational supports and mainstream services.

Diagnosis, Services and Supports: Make Autism assessment free somehow – whether through brining back the government assessment teams or directly funding assessment by private providers through bulk-billing Medicare items at adequate rates that mean the providers can provide them on demand. Rebated Medicare items lead to people who can’t front the money missing out, and guess what, Autistic people and their families don’t have the cash lying around.

There’s a LOT of resources out there on what is best practice. Scrap funding for ABA. Funding for services beyond the capital cities and major centres is still lacking and a constant difficulty for all disability and health services – more funding through the education services might be a way to reach out to more places, trained teachers in mainstream early childhood settings and schools who can liaise with “specialist” supports and know where to get support.

“Greater representation” of Autistic people / lived experience – this needs to go back to workplaces and training programs being safe for Autistic people and accommodating, they need to accommodate us at the undergrad level of teaching, speech pathology, occupational therapy university programs. It needs to be okay to be neurodivergent in University and TAFE. It needs to be safe to disclose at those places or in workplaces and to have bad days as a therapist. Mask on or off, we need to be supported.

Supported decision making support is lacking across the NDIS. People are being blamed for their providers taking advantage of them where they should have been supported to make their own decisions around support and purchases that affect their lives.

Governance 21. Develop a governance framework to support: a. strong accountability mechanisms, b. co-leadership and active involvement of Autistic people, as well as parents and carers, and professionals within the autism sector, and c. whole-of-government, cross-sectoral and coordinated approaches to implementationResearch
22. Explore how autism research can best be fostered and applied to policy and service delivery and
underpinned by the Strategy’s Guiding Principles.
Evidence
23. Develop a National Autism Strategy Evidence Framework, including a Theory of Change,
Program Logic, Outcomes Framework, and Evaluation Framework.
Evaluation and Reporting
24. Develop a robust Evaluation Plan and reporting mechanism, co-led by Autistic people and the
autism community, for the National Autism Strateg

Governance, Research, Evidence, Evaluation and Reporting: OMG ACCOUNTABILITY. Please stop saying you’re going to fix something, ask opinions on things, consult with people and then never follow up, or hold yourselves accountable. Closing the Gap, for example. It’s just a report each year on how much worse things are getting for most First Nations people, rather than a review that you act on to change what you’re doing.

You’ve on page 8 “Nothing about us, without us”. You know that means more than just consulting? It means actually implementing our ideas and not saying that you can’t because it’s too hard or expensive for the neurotypical and non-disabled people. I need to look at who you have on these committees but I trust in the Autistic members to unmask and tell it like it is. You may be uncomfortable, but when the Autistic people who can’t speak up for themselves are still being abused and neglected and the systems are upholding the abusers rights through funding them or listening to them over us, we get angry and you’ve given us a chance to fix that, so you’d better change things.

It’s not a completely terrible read, so read the plan if you’ve time, but again if they don’t follow through with action and funding why bother?

Listen to us, give us money to do the things we need to do to live, fund our supports, teach us how to identify our needs, trust us.

How being on the DSP has allowed me to stabilise my mental health

I was approved for the disability support pension about two years ago now. It wasn’t a straightforward process, and I was initially rejected, with my request for a review going through successfully without any more information from me. So, how has being on DSP improved my quality of life?

Slightly more money – the partnered DSP rate is currently $826.70 per fortnight, $140 more than the $686.00 I’d be getting on JobSeeker. (source DSS 2023) The difference for singles is more – $347.50 a fortnight extra to use to pay for the basics of life, costs which all agree are more with a disability – studies showing that you need at least 50% more disposable income to live with a disability in Australia. Not that any of the DSP gets to be disposable.

Getting off the Disability Employment Services radar – I’ve had a lot of exemptions from job searching in my time on payments, so for me this meant there was no looming date where I’d have to reengage with DES or have to get a correctly written medical certificate from my non-bulk billing doctor to have them waived again. This was a huge stress relief, not having to apply for jobs I wasn’t ready for, and not having to show up to fortnightly appointments to talk about how my life was falling apart this week and how a minimum wage cleaning job was clearly what I needed to fix my mental health.

Did you know under-35s on DSP have mutual obligations these days? Any disabled person who is failing to meet their “obligations” and getting cut of their payments is clearly being failed by the services that are supposed to be supporting them.

TIME and SPACE – time and space to do the therapies that I was already involved in. When I got DSP, I was doing 4 sessions a week of various therapies – individual and group – for borderline personality disorder and alcohol dependence. I could now just focus on these for awhile. So, I certainly wasn’t sitting at home on DSP, I was doing therapy in person and online, I was practicing getting out and about into the world again after a breakdown that coincided with Covid routine changes and added stresses. I’ve been sober 3 three years now, and certainly the support of having the DSP and not having to meet others expectations around employment have let me maintain that even amongst the rest of the chaos that life brings.

Time and space to figure me out and pursue my own interests and use my skills. I also started to learn the confidence to pace myself properly – I had a therapy goal that was basically following through on things I committed to. Which is two sided – both not chickening out with anxiety or low energy when it all gets too much, but also not letting it get to much – knowing my schedule, knowing how much and what sorts of things I can commit to and only pushing myself as far as I should go. Not saying yes because it’s expected of me, but giving things a go and seeing if they do spark joy. It’s amazing how much energy expenditure varies when you are following an interest!

Time and space to prioritise my “little routine”, allowing myself to see getting up and dressed or putting away the washing as an achievement, and being happy with my day. If I get my little routine together, if I do my chore, make my dinners, then I have more time and space mentally and practically to do more of the things that are generally seen as productive – supporting friends and family, writing and advocacy, maybe even doing a little bit of paid work here and there!

There’s so many goals I’m starting to see as achievable for myself after having this period of self-stability. It’s allowed me to try new things, put my hand up to do things I care about and feel are important, with the knowledge that I don’t have to meet someone else’s expectations to get paid each fortnight. I don’t know if I’ll make it back to earning enough to no longer get the pension, I’d love to do more, be more independent financially, actually have a disposable income, but I have time now. Time and space to dip in and out of the outside world as I can in a way that is of benefit to both myself and everyone else near and dear to me.

I’m certainly not “fixed”. I’m starting with a new psych, but being on DSP means that that would be prohibitively expensive if I hadn’t been able to get in with one that I can see for free for 10 sessions, but only on a Thursday and only from April. I also need to properly explore my neurodivergence, somehow find the energy and the money to get assessed for Autism and ADHD, especially if that would help me at all when it comes with getting even more okay with living in this world.

Just needed to breathe.

Where we at?

Got a rental inspection this Tuesday so tidying up. Yeah it’s soon, but I’ve generally had one a month after moving into a new place. We’ve already got it to a way better cleanliness standard than what we moved into, and Bruce has done amazing things in the yard. So as long as they don’t care about the burnt patch of lino from my little fire day two here, all it good. Sounds like Bruce’s kids and their mum finally have to move out of their place, so I’m crossing my fingers and toes for them to find a suitable rental.

Nobody Deserves Poverty

Still no internet. Called TPG this morning at the suggestion of NBN to see if there was any sooner install dates, no there isn’t Feb 29 is sooner than any others that are available – March 11 is where you’d be booked in for now. I also asked for a wireless dongle and they’re sending one with 60gig a month for three months on it – it’s more for Bruce than for me, his phone either isn’t liking being tethered all the time or was dying either way.

Trying to do little things that are really big things to work towards my goals this year. Got a busy Valentine’s Day coming up with the Kflay concert I’ve been dying for down at the Oxford Arts Factory! Gotta figure out how to do the Antipoverty Centre AGM before that – prolly just on my phone and get to Sydney early or something. We’ll see. I’m putting myself forward for a board role, so we’ll see how that goes. I’m actually nominating ahead unlike basically gatecrashing the AUWU AGM and elections and being relieved I missed out on the ordinary member role on their committee of management. Those selected are awesome and certainly deserved it.

One of the things I said I want to be able to do is go down to Sydney for things and be safe and sober and trust myself and be trusted by my partner. It’s been nearly three years since I’ve had a drink, and don’t really want to. But not yet to the point of coming off the Antabuse. Maybe this year.

Looks like I’m going to be doing more on the Nobody Deserves Poverty campaign this year too, at least up until the May Budget. Most Australians don’t think anyone does deserve to live in poverty, but seem to still excuse their politicians keeping welfare payments below the poverty line, so hopefully we can get more mainstream discussion on that (ugh, Facebook), get people talking about it and too their reps, get more organisations to sign on and push for welfare rates to be lifted above the poverty line in the May Budget. ALL payments, because yes, Jobseeker and Youth allowance are appallingly low, but carers, parenting and pensions are also still below the poverty line. A rising tide lifts all ships. And we need more voices of Welfare recipients in pollies’ ears when they’re still making comments about $180k not being a lot…

Nobody Deserves Poverty

We sold the AU so we now have money to repair the other Ford. And I can justify going full Hello Kitty on the Corolla. If you wanna help with the HelloKittyfication, there’s some items on my wishlist that would be sweet additions. That also means that some days I’m carless so really miss the NBN more and can’t wait til Feb 29 and decent internet and streaming my favourite games – hunting wabbits in Red Dead online and grinding in GTA. I have a couple of games I’ve downloaded to play offline, but I miss those one s in particular.

Opinion Pieces Wednesday, 19th January 2022 No one left behind in Labor blueprint for better future First published in the Australian on Jan 18 2022

I just cried to the TPG lady. How are you?

Suppose I’m due for a blogging brain dump, might as well start with how I just cried to the TPG lady because my internet install isn’t until Jan 8, and I read the text as today because you’d assume the internet would be installed the week you said you were moving house.

*breathe*

So we’re currently tethering on our Aldi sims with the excessive amount of accumulated data we have on our family plan. The plan that just went up from $80 to $95 a month because of course it did.

So, the move is actually going okay. Most stuff was moved in the truck Tuesday. The new place was dirrrrrty including a sly sprouting potato in the cupboard. But you know, we’ll leave our old place spotless because that’s how it works. I removed the last of the items from the main house yesterday, and decobwebbed and vacuumed. Next step for me is wall washing, bathroom scrubbing and bleaching and kitchen cupboards and oven, So I’ll head back Sunday armed with cleaning products and dig in. Tomorrow is supposed to be 41 degrees so we MIGHT get the carpet cleaner and do the only two rooms with carpets because they have the aircon. But aside from that, I’m clearly exhausted, plus I’m sore from rolling my ankle moving boxes the other day. And I did 20k steps yesterday on said ankle.

So everything feels hard, I keep feeling like I’m going to get in trouble for something. But I’m setting up my little house. Set up the coffee yesterday morning. Found everything to make dinner last night – despite having already tried to burn the place down and setting a box on fire I sat on the stop and the stove had been knocked on. So I’m down some kitchen items, like a vege peeler, some knives whose handles caught, and my cutlery tray. Ugh. So, yeah, the fire alarms work, but three people stayed in bed.

So I’ll hopefully get down to the community centre and op shop in Cooranbong next week before they close for the Xmas break and can replace some of the kitchen stuff and pick up a few other things. I think their food bank closes Thursday. I stocked up on short dated chocolates at the little church one near the old place yesterday that has its last week next week til school goes back in February.

If anyone’s feeling generous and wants to buy us some things for the new place off our wishlist the house one is here and mine is here. The kids could do with more size 3 nappies, bub is 4 months old now and growing well! Also my new monitor did NOT survive the move :'( Not that it matters if I don’t have a proper internet connection. My “plan” is to get back to streaming and practicing Japanese on Duolingo and Twitch in the new year, and find my happy little routine in the new place. There’s a local fish shop and butcher next to it and I’m hoping to be able to get us fresh meat and seafood there and have it with veges that are in season and either in the fruit and veg box I’ve got the first one coming today from Farmer’s Pick, with supplemented excess veges from OZharvest when I figure out the local foodbank hours and routine. I got a bag of frozen pies from the Woodrising community centre yesterday which the kids have already started on which is good because then they’re eating something at least. I’m supposed to be doing more for me and less for others. Let’s see how that goes!

17 days til Xmas

Speak BECAUSE your voice shakes – and because you’re damned if you do and damned if you don’t

So it looks like the major parties are still running their little dirt files on people they don’t like. Of course, in direct contradiction to the recommendations of the Robodebt Royal Comission, they’re still happily digging what they see as dirt to discredit the welfare class.

Last night it was Kristen’s turn. Kristen is part of the Antipoverty Centre, and guess what, they’re not affiliated with any political party. And yeah, Kristen may have once been active in the Greens, but she left them before they even had good welfare policies.

The Antipoverty Centre is a new organisation established in May 2021 to counter problems with academics, think tanks, charities, bureaucrats and others in the political class making harmful decisions on behalf of people they purport to represent.

We are a collective of activists, advocates and researchers with direct, contemporary experience of poverty and unemployment. We have deep expertise in poverty because we live it. We defend and fight for the rights of people like ourselves who experience violence at the hands of an economic system designed to oppress us. It is our mission to shift how people speak about and respond to poverty and unemployment in this colony.

We work closely with peer support groups, activists and grassroots civil society organisations to complement their work. Our goal is to help ensure the voices and rights of people on the lowest incomes are at the centre of social policy development and discourse. We believe there should be no decision made about us without us.

The Antipoverty Centre is not aligned with any political party and does not accept funding that places political constraints on our work.

So, as part of Kristen’s work, so often has media appearances. Kristen is eloquent in her criticism of all political parties and draws on her experiences as a disabled woman – she’s on the DSP and has NDIS supports that have been hard-fought for – to present at parliamentary committees and talk on the radio. Yes, her voice shakes, and I’ve seen her cry, but that’s the thing about lived experience experts – we’re here because things have been and continue to be painful and we want better for ourselves and others. We don’t necessarily care if we personally get the extra money in our Centrelink payments, we want to see everyone rise up with us. And if that means putting ourselves out there for criticism, so be it, but it needs to be be FAIR criticism.

Yes, Kristen has volunteers for the Greens at a high level, yes, Ricci formerly worked for ACOSS. But those things don’t lessen their current experiences of this torturous welfare system or the fact that it’s broken and Labor and the Liberals want to keep it that way.

Forgive me for being a member of the Greens. I’ve been on the local council ballot too and I may well again if day to day life isn’t too much of a struggle next cycle, so if you want to discredit me use that. Oh and I’ve had well paying jobs in the past, before my mental health and alcohol caught up with me. So it’s my fault I’m in this position being on DSP and wanting better for myself and my loved ones. yes, we get defensive, but my friends are just defending their right to exist, to survive on the meagre offerings of this system, without having to put up and shut up. We want better things to be possible for ourselves and for everyone else. Even you, if you fall on hard times, because remember you’re only not disabled until you are.

Media watch should practice what it preaches. tell us who gave the “tip off” about Kristen’s Green past… was it Labor? or was it your own little dirt diggers? Tell the dirt diggers that the ABC offered to pay for my accommodation to get me down for round two on QANDA with Jim Chalmers, but they offered at 2pm and I didn’t have the spoons to get to Sydney that night, expenses paid or not. You’re happy to use us when it suits you, so let us speak about what we live and breathe every day.