#CripAuspol launch

Backstory

At 10am on 10 October 2018 I launched #CripAuspol, the new hashtag for disability issues in Australian politics, with a discussion of Australia’s NDIS (disability funding program). Aren’t ALL disability issues political? Yes, but some are more political than others.

This is intended to be a weekly discussion on various topics but the following week I had mediation at the ACT Human Rights Commission with UniCanberra, my university that has discriminated against me, a staff member assaulted me in the refectory with several CCTV cameras running but the university destroyed the footage 14 days after learning about the assault then the university took me to court claiming that me talking about disability discrimination, harassment, assault etc was violence. The magistrate found that the staff member assaulted me and the university handled it badly, so hats off to the university for working so very hard to get me some degree of justice and evidence to submit to the Disability Royal Commission.

With all the above happening, I’ve transferred this post from another website as part of my consolidation process and I haven’t run a second CripAuspol discussion but I’m planning to. Soon.

CripAuspol discussion

Anyhoo, this is a record of the first CripAuspol discussion with links. It’s been slightly edited. I think I’ve included everyone’s tweets and I don’t think I changed any contexts. Please contact me for corrections and/or additions.

ME: Welcome to the inaugural live twitter chat where disability activists and academics will discuss the . Can we please start with everyone introducing themselves? A tweet about who you are and your work?

GEORGIA KATSIKIS: I’m a woman with a disability Currently working on research Was a member of the team at researching participants’ experiences of the NDIS

HELEN DICKINSON: Hi, I’m Helen and a researcher who looks at the NDIS and market effectiveness, issues of equity and inclusion, disability employment services and the use of robots in disability services.

JO WATSON: I’m Jo. I work . I help run disability & inclusion postgrad courses . I have lots of research interests. I’mbparticularly interested in communication supports 4 peeps w complex needs. I don’t have lived exp of disability but mum has quadriplegia and my sis ID.

ANNE KAVANAGH: researcher with lived experience of disability working on addressing social determinants of health of ppl with – employment, discrimination etc. work with some gr8 folk etc

check out some programs & projects i am involved in leading CRE Disability and Health Melbourne Disability Institute Improving Disability Employment study.

PAUL WILLIAMSON: The University of Sydney also has some great work going on looking at mid-career onset disability:

GEMMA CAREY: researcher working on the implementation of the NDIS 🙂 (Ping ).

ME (as PhDpeeps): : I’m Nalini Haynes, I have a disability (vision impairment that is getting worse as I age) but my only experience with the has been to attend an info session and be so discouraged that I didn’t apply for it. Although I have very little knowledge of the whole system, I know the is very important to a lot of people, some of whom have been lobbying for control of disability funding in their lives for decades.

GEMMA CAREY: That is true, but like yourself some people are having trouble navigating it as it’s a complicated system.

ELLIE MALBONAs I’m sure you understand, it’s a complicated system because the needs of the various NDIS participants across Australia are so different, there can’t be a ‘simple’ answer to funding supports. However, it should always be accessible, and NDIA needs to make that happen.

SUE OLNEY: I research public service markets Recently worked with a great team at researching participants’ experiences of the NDIS

A few of our researchers are chiming in now, but I’ll list some key findings from our research. NDIS interface with mainstream public and community services is a minefield of competing priorities and jurisdictional ambiguities across federal, state, territory and local government. Our research participants wanted clearer information about ‘who should supply what’ so they could make informed choices in the planning process. Some people told us they couldn’t find and access services approved in their plan, then lost funding in their annual review on the basis that funds previously allocated for similar items had not been spent. This was particularly prevalent in regional areas. This was also an issue for people whose health and wellbeing fluctuated over the life of their plan – they wanted some services, equipment and support on an ad hoc basis. Our research also revealed frustration among NDIS participants about staff turnover and having to deal with workers in the planning process who have varying levels of familiarity with disability and disability services and support. Finally, we found that factors that drive inequality – such as age, gender, level of education, health, access to technology, socioeconomic status, location and household structure – limited choice and control in the scheme.

It’s spawned several submissions to NDIS inquiries, & we’ve presented the findings in different forums to people with disabilities, bureaucrats, MPs & community stakeholders. Furthermore, 75% of the research team have disabilities – important for this type of research.

ELLIE MALBON: As I’m sure you understand, it’s a complicated system because the needs of the various NDIS participants across Australia are so different, there can’t be a ‘simple’ answer to funding supports. However, it should always be accessible, and NDIA needs to make that happen.

GEMMA CAREY: we’ve been researching the implementation of the the NDIS – including commonwealth decision-making and experiences, through to how to create and manage markets. We’ve also written on limitations of the NDIA and data issues with the scheme.

ELLIE MALBON: At the moment we’re doing work into market stewardship of the NDIS, and trying to work with DSS to help find ways to manage for thin market – hoping to encourage gov. to take active measure to ensure services are available

ME: Can you please tell us about ‘market stewardship’? That’s a term I haven’t heard before.

ELLIE MALBON: Actions the government might take include monitoring for providers potentially exiting the NDIS market and taking action to support them, providing grants or some block funding, extra funding to providers trying to service remote areas.

ME: So why aren’t these measures in place already? Is this a teething issue? Why are providers exiting the market? What additional barriers occur for those in remote areas? So many questions!

ELLIE MALBON: Some of them are, there is an entire devision at federal level working on market oversight, the NDIS quality and safeguards commission will monitor providers for failures, service delivery trends and quality. Those providers in particular should get extra support to remain accessible, in my opinion. The additional barriers for those in remote areas are transport costs and availability of services/demand. It seems that providers are exiting for a few reasons, one is that they haven’t adapted well to the new ‘business like’ arrangements of the NDIS, some simply doesn’t fit the new model (ie: crisis support for ppl with mental illness, in and out of the justice system). We’re concerned that participants have money in their plans but no one to provide their care There is a summary of that work here:

ME: So people are working on gaps in the system but the changes are not coming quickly enough for those in need, especially when we read stories like the former teacher who was to buy a house with her money but the wanted to confiscate her $.

ELLIE MALBON: yes that is true, the transition to the NDIS is leaving many behind and this is most crucial for the youngest participants, we know that early intervention is key

GEMMA CAREY: yes the scheme doesn’t work well for intermittent or relapsing-remitting type conditions. Also there seems to be an issue when people don’t have a clear medical diagnosis they can point to. We’re also concerned with equity in the scheme – not just is choice and control really available to everyone, but are some groups benefiting more because of their social background.

ELLIE MALBON: there is a short piece on equity in the NDIS here:And we are also working on two new papers that bring together the empirical evidence about who can access the NDIS.

SALLY ROBINSON: Agree! e.g I’ve been surprised (alarmed!) at level of skill in plan managers supporting people I know who are self managing, but have no other informed support. They’re relying heavily on plan mgers to be ethical. Would hate to see people constrained, but this is ripe for abuse.

ME: so how can these issues be addressed? It seems pretty important that short-term incapacity to work is addressed because these events are not uncommon and adequate support can help people return to work.

GEMMA CAREY: at the moment, they aren’t being addressed. Right now, those people will have access to supports through the health system which we know doesn’t really provide the right kind of supports or in a timely manner.

ME: Are these important issues not being addressed the responsibility of government? Policy makers and advisors to the government? Service providers? Who do we need to lobby? Is more academic research required?

ME: Some people have funding but no one to provide services. This is a concern and an opportunity, a market that is being untapped. How can this be resolved?

GEMMA CAREY: It’s complex – some first steps here

SALLY ROBINSON: I’m a researcher working with young people with disability in regional and rural NSW. My interests are around safety & abuse prevention & promoting belonging. I support people w NDIS planning in a personal capacity. There’s crossover….

ME: So what successes, what failures and what flaws have you seen in the , Sally?

SALLY ROBINSON: Similar to others, I think – those well supported & educated/advocated for are seeing some transformative change. Services are struggling to make the shift. People on the margins remain so. Big equity issues still to be addressed, much less resolved. And providers leaving ‘unprofitable’ or unviable rural markets, combined with a bit of cherry picking to avoid people who are hard to support… we’re seeing this play out in our rural and regional area. Leaving people with even less choice.

Brett describes his difficulties as a ‘client’

BRETT OSLER: Former mid-career public servant (>15 years) & Master of Public Policy/International Relations student with illnesses (ME/CFS, FM) following tick bite in Brazil 2014. Not eligible for .

ME: Thanks for introducing yourself Brett. You’re not eligible for funding, but do you still need support? If so, how has this affected you? (If you don’t mind sharing please.) How could the system improve?

BRETT OSLER: New to ‘client’ side & appears a great fragmentation of information, no consideration for those with ‘temporary’ illness & little-no support. Australian system prohibits treatments available in Austria, Cyprus, Germany, Malaysia, Switzerland etc. Forced o/s for private treatment. As most world know with newly acquired disability, health costs do not decrease especially when medical practitioners have so few answers & want to test for everything. Private health cover has limits, salary continuance is a constant battle (& added stressor)

GEMMA CAREY: Yes and through the health system you won’t get supports like transport, help around the house etc.. even if you temporary condition leaves you with limited mobility (speaking from experience!).

Yes the scheme doesn’t work well for intermittent or relapsing-remitting type conditions. Also there seems to be an issue when people don’t have a clear medical diagnosis they can point to. Right now, those people will have access to supports through the health system which we know doesn’t really provide the right kind of supports or in a timely manner.

ME: People with acquired disabilities or incapacities face barriers too, including access to health care and tests. Support is needed, especially if these people are to return to work and/or live full lives. How do we fix this hole in the system?

BRETT OSLER: At present, it is confuse, divide and conquer by design aimed at the most vulnerable which often includes low SES, literacy, etc. Without the true data on all illnesses, we do not know the full extent & Impact Austwide. A whole system redesign using is a must, not

Some are ‘contested illnesses’ given the Australian Government reliance on US-based orgs that have been subject to antitrust, conflicts of interest (insurance, pharma, etc) decisions. Other autoimmune illnesses see some barely return to work with persisting symptoms

Housebound and bedridden disabilities disadvantage further

This gif could be talking to NDIS officials.

via GIPHY

RICKY BUCHANAN: G’day … Sorry I can’t do 10am due to support worker timings. I’m Ricky, I’m an participant and I’m bedridden. I do a lot of activism around homebound/bedridden folk who are usually locked out of NDIS due to being unable to get required medical evidence. For myself the has been massively incredibly stressful and anxiety-provoking but has ultimately provided similar supports to what I had before NDIS, which is what I wanted. I have much less flexibility than before, but I can live with it.

For other homebound/bedridden folk though, is a disaster. When you’re homebound/bedridden getting medical evidence is either EXTREMELY difficult and causes significant increase in disability, or it’s just flat out impossible to get it at all.

People are losing their existing funding (often HACC or similar) but being rejected from NDIS. Some are waitlisted for aged care packages but that doesn’t help immediately and doesn’t help enough.

Personally I skipped the medical evidence problem by getting in via a List C program. If NDIS ever goes back and asks me for medical evidence when I’m reviewed, I don’t know what I’d do because there’s approximately zero chance I could actually get the evidence together.

ME: Why is that? You’re disabled, I assume that Centrelink and the NDIS have medical records etc, why is it so difficult?

RICKY BUCHANAN: I was accepted to Centrelink DSP in 1997 so their medical records are far out of date. Last time they assessed me was >10 years ago. Also the disability funding I had pre-NDIS was granted in 2000, so they had no current records to give NDIS.

When someone is too disabled to go and see the specialists that would “prove” that disability, the whole system is a giant catch-22. For me to see a specialist requires stretcher transfer and a month of increased disability and worsened symptoms. For some it’s impossible.

I have significant pain caused by being bedridden and previously my disability funding covered weekly Myotherapy which did a great job of keeping the pain in check. refused to fund it on the grounds that it was a health thing, which I dispute. Had no energy left to fight.

I plan to be more assertive about it next review though, I have all the required evidence showing it’s reasonable, necessary, cost effective, works for me, all that stuff. Hopefully they say yes!

ME: Best of luck to you. Do you have suggestions for other people in similar circumstances?

RICKY BUCHANAN: Not really. The whole is set up so that you can’t win in many situations  

ME: It’s such a shame! When people were lobbying for individual funding and personal control over that funding, the idea was that this would provide support and enrich lives not make people worse off.

DAVE PETERSThe issue is not really any lack of evidence about whether it’s reasonable, necessary & cost effective, but NDIA will always argue that it is more appropriately funded elsewhere (without any info about where…)

RICKY BUCHANAN: That’s definitely my feeling. My plan in when I’m reviewed is to come armed with COAG specifics and the legislation and to make it v clear I’m willing to escalate this as far as it goes if they don’t OK it. I’m lucky I’m able to do that!

ME: Those are excellent ideas. I’ve found that people listen to me when I advocate for others but when I am the disabled person in question they don’t listen to me and want to talk about me not to me. Have you had this problem too?

Even at university, where I’m enrolled in a research degree, staff wanted to talk to my husband who was there only as support (and a witness); they didn’t want to talk to me. He had to keep stopping them and redirecting the conversation.

NDIS and psychosocial disability

via GIPHY

DAVE PETERS: I’m an participant w/Psychosocial Disability. Lots of physical issues directly related to my disability like extreme weight gain from antipsychotics, high risk of CVD & T2 Diabetes, Cancer, but told by that even though my goal is to improve my physical health. I cannot access health & well-being funded supports as they’re more appropriately funded by mainstream medical. My physical health issues are directly related to my disability! Already unable to access sufficient support in mainstream but despite evidence, says no!

GEMMACAREY: We are seeing a lot of issues where the NDIS intersects with mainstream services like health and education. There is now a team in commonwealth looking at each of the intersections, though this will likely take time to filter down through the system.

DAVE PETERS: It’s difficult to swallow, esp as some are getting access/funding while others (like me) aren’t. There doesn’t seem to be any consistency. Access passes R&N criteria and early intervention criteria but still lots of planners trying to pass the buck when already so disadvantaged!

GEMMA CAREY: Yup – lack of consistency across the scheme is a massive issue. I think this came up a fair bit in the Joint Standing Committee Inquiry. But we will have to wait and see what the actions are to emerge from that (beyond the recommendations, I mean I’m not sure it really has teeth).

DAVE PETERS: Lack of clarity, transparency & consistency have all been flagged as major issues, but without regulatory or statutory oversight we’re left with req for reviews, AAT & the Courts to seek individual rulings on the grey areas. Unacceptable.

The system is broken

via GIPHY

Jessica Walton relates how she heard NDIS providers making amputee jokes and an NDIS event THEN ONE OF THEM DEMANDED SHE, AN AMPUTEE, JOIN IN.

El Gibbs on how a woman with a disability suffered in solitary confinement because ‘there was no other care available for her’.

Research central database

AINE HILLBILLY: There’s lots happening — be good to link them all up….or has some one already done this & knows all of the good things happening?!

ME: Someone might have but I’ll summarise or Storify the discussion today and include links then post online.

AINE HILLBILLY: Sorry – I meant all the disability studies and research going on..

ME: I don’t know but most of the people who joined the discussion today were researchers. In gathering this information into one post, I’ll be linking to research and researchers. In my experience finding out about research is pretty ad hoc, reliant on Google Scholar.

SALLY ROBINSON: you’re onto our dirty little secrets 😂

CADRnews: CADR website has work in progress register so we can all see what’s going on pre publication. After publication(Australia at least) all published disability research since 2000 is now available there too ( but access might be behind a pay wall).

NOTE:CADRnews only lists CADR research, not anyone else’s.

Wrap Up

GREGORY MANSFIELD: Access for disabled people is rarely provided by choice. Without laws & lawsuits requiring it, & disabled people fighting for it, inaccessibility & exclusion predominate. Ableism & barriers do not disappear voluntarily. They must be dismantled.

ME:It looks like we’ve finished for the day, so thanks again to everyone who contributed to this discussion. I’ll do my best to put together a summary with links, and next week we’ll have another live twitter chat but on a different topic. Cheers!

BRETT OSLER: Thank you & all others that engaged. The start of big things I am sure! Catalyst for ⬆️📑💰?

via GIPHY