What’s simply “convenient” for you may be an essential disability accommodation for others

Every week there’s discussion on Twitter about convenience and disability accommodations. You’ve probably put your two cents in without even knowing it on a post ruing how you can buy pre-cut fruit at the supermarket, or on a post about the labor conditions of DoorDash workers. You probably weren’t deliberately ableist, you just come at it from your point of view – home delivered groceries from the majors is a convenience for you, a time saver in this busy world, while for others it’s the only way they can do a grocery shop for whatever reason. That reason isn’t really any of your business, but it could be physical ability to carry groceries, energy sapping disabilities that really can’t prioritise browsing the aisles, sensory difficulties that mean supermarkets are hell on earth, and many more. These are some of the people who can’t just shop at Aldi, no matter any price savings that may come from it.

Other people may DoorDash a meal on a day when they don’t have the energy for cooking, after prioritising other mentally or physically taxing tasks in their spoon allocation. They’re likely well away that the delivery driver isn’t receiving minimum wage, and feel guilty. That driver is possibly also disabled or another minority, eeking out a living in this discriminatory world, taking what work comes their way.

A Twitter contact was denied pre-prepared meals in the NDIS plan. These services tend to be only part-funded even if you do get them, but can mean the difference between subsisting off two minute noodles or having to rely on a $60 an hour NDIS funded support worker to cook for you. This particular person loves to cook and can’t do it any more due to their  disability, but instead of accepting this, the OT recommended they get more supports around learning to cook in order to become independent in their cooking. Again, she really wishes she could get back to making meals for herself and even for others but that’s not what life is presenting her, and having to fight the NDIS to acknowledge this and BELIEVE her is also energy-sapping and disheartening.

I was present for my sister’s first NDIS planning meeting this week, and she, like many late-diagnosed AuDHD peeps out there, has a collection of strategies that she uses to get by in this world, that are “ok” but not brilliant and we’re hoping these new supports can help her organise her life into something she thrives in.

Meanwhile, I’m watching and seeing how it goes for her, seeing if medications and therapeutic and other supports actually helps her out before I even consider going down that route for myself. In the meantime I have my own little things in life that people may consider convenience tools but I use to make my life more satisfying and manageable.

One is the meal box delivery services I use, a mainstream tool as an executive functioning aid. I still have to / get to cook meals every night, but I don’t need to get into the planning out of the meals, what and how much of it I need, ensuring what I want makes it home in my shopping, and not having to face the dilemma of what to do if something isn’t available (common for us Aldi shoppers) because I’m there at the wrong time of day. It also makes my actual in-person shops smaller – I mostly buy dairy and eggs or little treats, with extra fruit and veg coming from my foodbank foraging through the week. This means I’m in the store less, get less overwhelmed, and don’t really have to think too much on the spot, I just do the shopping and get out.

The ingredients that came in one everyplate box

I don’t want to just talk about food, but that’s my thing isn’t it? Ever the food blogger, even now. But again what you might see as a treat – seeing a sex worker, having a trip away from your family (or respite stays when you’re caring 24/7 for someone), having a bar fridge next to your workstation – enable you to function and thrive and live your best (disabled) life. If the NDIS doesn’t fund these things, many disabled people (or their carers) won’t have access to them, they will never be a little luxury for them, and they certainly cannot afford to fund many of these things themselves.

So, when you worry about whether something a disabled person is doing or using is necessary, it probably is for them. Unfortunately we’re not at the stage of most disabled people getting to move beyond that, so please watch how you challenge their everyday needs.

 

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.

I hate the surplus

Nineteen Billion Dollars

Nineteen Billion dollars isn’t much, they say. It’s also not the amount. The fact that there was any budget surplus while people are struggling to afford food and housing, whether they have a job or not, is a failure. It’s even more insulting that it’s brought to us by the supposed party of the workers, Labor. The party that talked the talk all through opposition that JobSeeker was inadequate and promised that nobody would be left behind. That Labor.

It’s a completely different Labor labour party than the one people voted for or gave their preferences to. We saw early last year, Labor walking back enthusiasm for raising the rate of any welfare payments and then being negotiated into a little panel of selected yes men headed by Jenny Macklin who told them that raising Jobseeker significantly was essential, but they chose to ignore that in favour of almost bringing back single payment eligibility back to where they left it with Gillard, and giving Jobseeker and Youth Allowance recipients a full $20 a week extra (from September 20, none of this is in yet….) Oh and a 15% increase to rent assistance, which for me brings it to $171 to service $820 a fortnight rent.

Rent that I’m just waiting to go up. If I’m lucky, I’ll get a new lease with a substantial rent increase. If I’m unlucky they’ll decide to redevelop this land and imma back back in the rental market, crowdfunding for a houseboat. We muse about our options often, hoping to get this place for another year, while Bruce’s ex has to be our of her place by the end of the month and my stepkids baby is due August 5 (yes I’ll be a grandmother!) Hopefully the stepkids, their partner and the baby will get some emergency social housing, which they said they probably will based on the noises from the not for profits social worker… And we might get our stepson here since he doesn’t have a place yet, but works in town. I’ve adapted to the idea of him moving in. Better than another couple and a baby and cats. No, there are no cats moving in here.

Where was I?

Oh that’s right, thinking about the surplus (did you hear it was $19 BILLION?!?) And how Labor and their Stan’s feign embarrassment while saying they’ve been responsible with the budget and we must think of future expenses (like the stage three tax cuts and submarines) and do our bit by continuing to live on sub poverty welfare payments, minimum wage that won’t get you a rental let alone a home to own, and Coles and Woolies posting mega returns while aski g us to donate to Foodbank and Ozharvest at the checkout on pension day when we only queue for food every other week.

I suppose you want me to do my own budget and write solutions for the government. To say that pleading with them to raise the rate of income support above the poverty line and to build public housing NOW and not say they ought fund affordable housing (whatever the fuck that is) if their little investment pays out. Meanwhile saying the Greens are all talk even tho they are the ones with money to burn but not sharing it where it’s desperately needed

So I wait and see if I’ll be pleasantly surprised.. not by Labor, that ship sank long ago. But by a new lease on this place. For the tent increase to not be too excessive. For my stepkid to have housing of some sort before their baby is born. For them to continue to have hosuk g while they raise the kid. That the threats to exclude more people from the NDIS don’t happen. That my sister and her kids can keep their rental for as long as she wants it and they can access the NDIS supports she needs for them with less off a fight that the previous plans. That the government doesn’t make things worse for everyone. Which they are on track to buy simply fiddling around edges and trying to appease the landlord class.

Nineteen Billion dollars.

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?