Disability, Aged Care and the NDIS

G’day,
Having worked in the Disability/Aged Care Field for 20 years I have many friends who work in that area. I have been asked the questions regarding the PPAU stance on the implementation of the NDIS.

My response is “Despite being flawed in many areas, the NDIS is a much better framework to provide a more comprehensive positive outcome for people with Disability and people losing independence due to age, medical condition and/or mental health. In Principle, the PPAU support the nation-wide funding and rollout of the NDIS.”

When asked about the flaws I explain my understanding and my concerns, but as such, isn’t PPAU Policy until the issues have been raised, discussed, tested and verified. The biggest flaws appears in Assistive Technology Strategy.

Maybe I’ve missed it completely but do we have a Policy on the NDIS, Disability and Aged Care?

Cheers
Martin

Those flaws being:

  1. The problem with Patents - high cost of low demand/low production AT technology. And absolutely nothing on the potential that IoT can have. Have strategies for both can reduce long term cost blow outs…
  2. Cost blow-outs - it’ll be another NBN. They have no real world strategy to ensure that costs don’t blow-out.
  3. Direct funding to client model. Generally that means families, and sorry to say, are woeful at understanding and choosing the best support choices for their sons or daughters. Seen that time and again.
    There are a few others but I won’t bore you…and yes I’m replying to my own Post…and yes that’s very sad…
    Cheers

[Edit: Oh and a big whinge amongst former colleagues is the number of hours per day doing forms and reports taking away from support times. And it seems to be getting worse]

In the health policy, there is this:

Pirate Party Australia supports the ongoing roll-out of the NDIS—although continued consultation with carers and patients will be needed to maximise the benefits. Pirate Party Australia would support the NDIS by making items purchased for disability support tax-free. We also believe mental health efforts within the NDIS may need additional direct support.

I don’t think the health WG had someone with your expertise on hand when that was written. If you’ve got suggestions on specific lines we can/should include in the health policy, feel free to propose them here (or join the policy committee). Note that as a rule we’d rather propose reforms to make the system work better (like changes to patent arrangements) instead of just saying “spend another $x billion”.

Well the first amendment would be to remove the word “patient” which is anathemic in the Disability Field. We stopped calling People with Disability “patients” around 25 years ago. “Patient” has too many references back to the bad old days of institutionalisation and the abuses resulting from that. Terms that are considered more empowering - “client” or more specific “person with disability” or even “consumer”.

Totally agree!

Cheers

One of the major challenges with the NDIS will be to prevent it from replicating the systems that it is meant to replace. Unfortunately, it does not appear to have been widely recognised* that the deficiencies of the States’s disability systems could to a large extent be sheeted home to the union and management cultures that pervade disability services; an extraordinarily inefficient, self-serving “them” and “us” culture where people with disabilities are always “them”.

The NDIS could represent one of the greatest and most progressive redistributions of wealth in this country’s history. As workers/managers migrate from one system to another my fear is that they will export the culture of lining their own pockets with them. I believe it is already happening.

Cultural reform of the disability sector that places the UN-CRPD (https://www.humanrights.gov.au/our-work/disability-rights/international/united-nations-convention-rights-persons-disabilities) front and centre is what is required -this will cost money, but it should also produce results. Instead we see the NDIS being watered down with “My First Plan” and piecemeal spending in what used to be called tier 1 and 2.

*read between the lines of the productivity report

Cheers,

Charles

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Good feedback. You say cultural change will “cost money” - what would that money be spent on, specifically?

Hi,

I think this money would need to be spent on ‘empowering’ -i.e. placing the medium of exchange- in the pockets of the people with a disability, and allowing them to spend it in a way that does not force them to comply with risk adverse, public service mindset values. In a way, that allows people with disabilities to accrue capital goods if that is what they require. Or to visit a sex worker, or go on a cruise (and visit a sex worker), etc.

It could also be spent on educating the community about our social obligations to people with disability so as to bring about structural change at a conceptual level (this will take time). And then, on real nuts and bolts changes to the fabric of communities so as to allow people with disabilities to participate in a meaningful way. This look like ramps and dual-level countertops, or it could mean redesigning forms and procedures to support people with cognitive or attentional disabilities.

One important lesson for me was to recognised that disability is multi-factorial. Cognitive, “mental health” and physical disabilities have somewhat orthogonal ameliorative requirements. Pouring money into one disability bucket might mean that it gets co-opted by “smart people in wheelchairs” who may have the edge when it comes to “choice and control”, so we would see lots of modifications to the physical environment but little improvement in meaningful work/schooling for people with Borderline Intellectual Functioning (to name just one example).

I would also like to see money spent on encouraging and support sole trader start-ups to provide services under the NDIS, and models that use IT to allow these business to advertise their services and perhaps even operate as a form of syndicalism.

Cheers,

Charles

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So in other words you want the National Disability Insurance Scheme to operate like an insurance scheme. I think giving money directly to the people and letting service providers compete to offer the best support is a perfect fit for our principles. The only thing is - I thought the NDIS was already using that model, at least among the “tier 1” cases. Is it falling short of that ideal?

Hi,

Well the promises made do seem to be getting watered down, the “My First Plan” process reflects part of this watering down -the emphasis is on the NDIA need to “on board” people rather than to act on hopes and aspirations.

Furthermore, here in the regions at least disability services are a bit of a closed shop where jobs go to the girls (and boys) based on a rather nepotistic (or desperate) kind of meritocracy. ADHC ‘rats’ are starting to leave the galleys of the sinking ship (pay & conditons intact of course) and infesting the SS NDIS…

Hi Charles,
Not disputing what you believe, but I was wondering what Disability field expertise/background provided you with this very interesting perspective. Are you (or were you) a Disability Support Worker, a Disability Service Manager, in Recruitment that specialises in placing people with Disability, a person with a Disability, a family member of a person with a Disability, an OT or Physio Specialist?

Cheers
Marty
PS I hope you don’t think I’m “having a go at you” but if you can provide additional expertise to a development of a Policy that would be very useful…

Hi Marty,

I worked as a psychologist for ADHC in NSW for 3 years. Started in the intellectual disability “shadow world” in 2008 and have been involved in various ways ever since.

Cheers,

Charles

Curious to what you mean by “shadow world”. As to the report, this is simply neglect, lack of standards, lack of proper supervision, lack of independent auditing and unqualified staff, and if you work in the field long enough you hear of horror stories.

My experience with varied organisations in management, training and at the coalface showed me that most people are trying their best with limited resources; and to most external perceptions it may look like neglect. Trust me when it’s difficult to have a meaningful and empowered social life on $5 per week. Pension minus rent minus transport minus food minus house bills minus individual purchases minus disposables minus organisational administration minus minus minus…doesn’t leave much left in the piggy.

To achieve the equality that you discuss is more aspirational towards the Nordic model rather than working and modifying the model of the current NDIS. To pay for the equitable system such as the Nordic model you need to convince Australians that they need to adopt a much higher taxation rate. Don’t get me wrong, I think the Nordic model is a fantastic example of socially equitable government sponsored policies (apart from Sex Workers).

Because of the nearly universal acceptance of the NDIS by most parties, it is the system that we have and must work with. And since it’s the system we have, our Policy must be directed to proposing changes that ensures a higher chance of success and much better outcomes. Your contributions to this discussion have given me a fresh direction/insight, to add an aspirational preamble to the policy.

Cheers
Marty

PS. Kind of disagree with putting the problem with the Unions unless it’s the AWU and their pathetic Disability Support Worker award. The ASU have created the SACS award which is considered a fair award among my many former associates. All my former associates still work as direct support staff and I still keep in regular contact with them.

Hi Marty,

Thanks for your reply. What I mean by “shadow world” is that many people with intellectual disabilities are effectively segregated from mainstream society. For example, they might go from a special class/unit in primary school to a special class/unit in high school and then into a closed workshop (shredding paper etc.) and group home – We might know that these people exist, but unless we have reason to come into contact with their world we have no clues as to what their experience (economically, phenomenologically, etc.) is like. Furthermore, working in the public service (ADHC) I never before in my life encountered public servants who were so unqualified and incompetent and yet so well paid (e.g. ‘earning’ over 100K p.a. as an “Access Manager”). I could only concluded that these people were operating in a kind of ‘sheltered/closed workshop’, and that for some reason the people with skills/knowledge were somehow excluded from these jobs

Good points - yes there needs to be wholesale reforms in the Disability Sector. Toowoomba has unusually high levels of participation and exposure for people with Disability. The Endeavour Rally and Carnival of Flowers allows them to highlight their community participation in various media mediums. But unfortunately this is not the norm from what I’ve seen in other communities. These events and their inclusion for people with intellectual disabilities in these events was started by a few exceptional people; not by services or government despite the media releases.
Interesting to find out that Public Servants with the title of “Access Manager” doesn’t have any experience or qualifications in that area, does show a severe lack of accountability or duty of care. And this highlights a need for an Enquiry into Disability Service across Australia. It needs a much wider scope than what the Green propose.
Cheers

Hi, I wouldn’t say that they have no experience, but they may have surprisingly little, and this is a problem which is exacerbated by people acting in higher paid roles. What you will also find is an aversion to outcome measures. Hours of service delivery will be dutifully recorded (and fudged), but when one asks about measurable outcomes… well, the response is somewhere between panic and disdain.

If a “human services” organisation (especially a public funded one) is operating solely on the basis of ‘inputs’ (and some of these may masquerade as outcomes -such as attendance numbers, or games of pool played, etc.) then I am afraid that it is most likely a scam.

Cheers,

Charles