I am a person with a disability.
I think the Independent Assessments and other purposes changes are a terrible idea for PWD and eliminate the heart of what the NDIS was trying to achieve and remove the PWD from decision-making, excluding them as decision-makers from their life. This is exemplified by requiring someone to answer questions about you in a separate room. I’m not comfortable about that. And neither are my friends. They don’t want to talk about me, and certainly not without me present. And quite frankly, that is appropriate. Why am I excluded from an assessment about me? Surely, I am central to this process. Particularly when they only know me in certain contexts. I don’t know anyone who knows more about me than me. It’s insulting to infantilise me, and to treat me as someone that can’t be trusted. It’s particularly galling when the system that is interrogating me (& my friends), has inflicted trauma through the access and then planning process… and I’ve only been on a plan for 3 weeks. The proposed changes absolutely will increase the trauma experience. Surely there should be a duty of care to set up systems that don’t cause ongoing trauma; let alone actively design them to increase trauma.
On what research basis have the IAs been based? I believe it’s a small study of institutionalised PWD with an intellectual disability. None were children or had children. The assessment tools used in that study are not the same ones being proposed by the NDIS. So, it seems, the IA process was developed as someone’s brain fart without proper consultation or ethics approval. Alarm bells are ringing. This isn’t the basis on which good policy is developed or why the disabled should risk being plunged into all manner of unintended consequences. This policy in the run is what caused Robodebt. It certainly seems that this policy will end in similar pain, suffering and trauma for the disabled, with our Roboplans.
The IA testing forms are being bastardized and not used in the way that they were intended, which puts their reliability and validity in question. Additionally, the IA pilot and assessment hasn’t been undertaken within an ethics framework or with ethics committee oversight. The data collected isn’t meaningful as the questions are too broad to have any meaningful conclusions. An honours student would be able to point out the flaws. And yet a whole series of decisions have been made from this inconclusive (at best) and purposefully misdirected (at worst). Furthermore, the assessors are assessing people with disabilities outside their expertise and field qualifications.
Independent Assessments
Submission 322
The IAs will then be used to garner a plan amount from a standardised actuarial system. (Meanwhile plan after plan has been slashed over the last six months, which I assume has been to reduce the average plan amount in preparation for the standardized plan funding. I really recommend you review if the average plan amount has been reducing on a month-to-month basis rather than ask for annualised figures). Being awarded an amount based on functioning is a deficit model and does not engage with the PWD at the centre of discussion (their goals, an investment in them and their inclusion in society, and their ability to contribute), which is what the basis for “reasonable and necessary” in the current iteration of the NDIS sits. The proposal that a future draft will have the term “reasonable and necessary” in it is no consolation, as the inherent intention and legal standard of the phrase will be undermined and extinguished.
The focus becomes about reducing the PWD to a cost centre. The NDIS is not a welfare system. But it is being positioned and discussed in the media as such.
How, for example, could a person live independently, if the funding is based on communal living? The funding model is prejudicial and lumps PWD together in funding groups. This ignores the vast differences each disability presents, the needs the people may have, and their desires to engage in economic and community participation. The PWD is faceless and commodified. That is not what the premise of what the NDIS was based on.
This seems problematic for people with multiple disabilities, those with complex problems, those with families with multiple disabilities or single parents with a disability, First Nations people, regional or remote people for example, or worse, those that fall into multiple categories. Standardised funding meets the equality standard, but not the equity standard. Not all disabilities are the same; not all circumstances are the same. Some people are more resilient than others, some have more or
less family support; the whole idea of standardised funding ignores many issues and certainly does not reflect the majority of PWD voices. We of all people understand the concept of equity, and that the more equity barriers you face, the more additional support you require. Again, able-bodied and paternalistic attitudes having too much say in policy development. Funding should be based on personal circumstances, not a computer. Surely, we have learnt from Robodebt that a computer is net seeing the big picture or able to factor in all the requisite variables in decision-making.
If there are equity concerns around access, why not provide an alternate pathway for those that choose it? It should be perfectly acceptable to have assessments made by existing medical professionals that the PWD engages with. Firstly, because their medical team have the most acurate and up to date knowledge of the PWD. Also, many, many trauma PWD have a lot of trauma around medical and institutional ineractions. It takes a lot of time to learn to trust medical staff. To expect PWD to have to re-explain their disability and its effects resurfaces this rauma, and continually reinforces your identity as a PWD…not as a eron. It is a hurdle a bureaucrat may find acceptable, but to PWD, it is invasive and often feels combative, without a thought of how difficult every single day is, let alone the lifelong history of having to “prove” yourself or explain yourself. To enforce IAs is cruel and unnecessary for many PWD who have established medical relationships.
I would also ask to consider in what circumstances IAs, and particularly ongoing IAs can have an exemption. For example, where trauma exists, or where a person struggles with profound energy issues. Surely in cirumstances where an IA will cause harm, there should be an alternative pathway.
If the NDIS/A wanted to effect meaningful change, they should consider LAC roles be awarded to people with an understanding of disability, and they support and coordinate PWD to navigate NDIS from first point of contact to plan implementation. The LACs should be much better trained in listening, collecting and collating data. I suspect if the quality of LACs significantly improved, the number of RoRDs required would drop dramatically. I know from my own experience my LAC was incompetent, lacking any ability to think cogently, ableist and paternalistic. It was a horrifying experience. But despite the horror, I can see it’s the lack of her experience in disability, lack of educational qualifications in any area, ard lack of critical thinking ability that are the issue. The hiring criteria and KPI measurements for these roles are not meeting the needs of the
Independent Assessments
Submission 322
disabled.
There is an expectation that a secondary person provides information about you and your disability at the IA. How insulting that I am not allowed to fully advocate on my behalf. And it’s such an ableist perspective to assume that others can interpret my lived experience.
The IAs are problematic because the companies contracted have ties to people that were exposed in the Banking Royal Commission as having problematic conduct. It’s highly likely the same tactics will be used in the IAs. It’s immoral to expose the disability community to this person. Surely there is a moral duty and duty of care which should make the government seek to protect the disabled, not expose them to people who have proven to take advantage of people in previous business dealings? Also, there is surely a conflict of interest, and if it’s not ,it should be, that ex NDIA CEO stands to profit from the IAs. The purpose of the NDIA is to support the disabled. The IAs and many of the reforms being drafted seem to be about taking advantage of the PWD while pretending its primary concern is to prop up the financial viability of the NDIS. The PWD are not “the problem”. The sharks creating the changes are poised to make huge profits. As a whole, the proposed changes cannot be sold as anything other than a marketing exercise to ensure a payday for quite a few pale, stale and abled individuals. Off the backs of the disabled. It’s putrid and unethical behaviour.
the intention of the NDIS scheme’s “reasonable and necessary” test, seems to me to be problematic because able bodied people are looking at what is being requested and assuming because it’s not reasonable and necessary to them, that it’s not reasonable and necessary. Using morality and opinion as a barometer is unreasonable. I am exposed to many, many disabled people and overwhelmingly they attempt to work within the system. But also overwhelmingly, I’ve been schooled again and again by how different our lived experiences are. And not to be judgmental. Over and again,many many of the AAT cases are found to have reasonable and necessary requests. The problem isn’t that the requests are poor, but the scheme is oversubscribed. To remove this threshold is political rather than about the actual Act being problematic, and also seems to have the intention of reducing AAT pathway and use. The degree of harassment PWD face in going to AAT is awful. The NDIA “lawyers up” against PWD and goes on the attack. If this is a bottleneck and too much money is being spent on lawyers…fix the system lower down. Don’t find new ways to attack PWD!! It’s completely unethical behaviour. Address the funding decision-making before taking a club to
PWD through the scheme. And removing one of the main tenets of the scheme, the “reasonable and necessary” test, and passing it to the delegate is not a solution! Already the delegates are making blanket statements that things are not “reasonable and necessity”. But it’s not a uanced decision, it’s an arbitrary internal guideline. For example, some PWD can’t always cook due to disability rather than a lack of capacity. yet the guidelines insist they can only access prepared meals if it’s a stated support, even if it’s less expensive. And if they gave it as a stated support, there is no room for them to use the funding on a SW if their capacity improves, or for a change. More and more arbitrary guidelines will become stated supports as a way of wrestling choice and control aWay from PWD. Why do PWD need this degree of oversight? And surely, they are best equipped to know how they will get meals working around their abilities/capacity. I can’t help but feel some person was noyed they can’t access prepped meals so why should disabled people…without considering the multitude of barriers they could be facing.
Finally, the NDIA is looking at introducing plan money via a card. This makes our data even more exposed to misappropriation and undermines our rights as people. Is it even ethical? I doubt it. The purpose is to icromanage access to funds and reduce where we can buy disability related products. So presumably in future I won’t be able to access silicone straws from Kmart, but will have to buy them through a more expensive supplier. This system assumes a computer can interpret what i need for my disability, but worse assumes i am not able to make decisions on what will support my disability, or the timeframe in which i cAn spend my funding or where i Can buy it. I self-manage because there is so little i Have control over. It is validating to be Able to Make decisions about My life On My Own terms. I don’t Need To Have My Plan doled out As If I’m A child. I CAN PLAN Ahead And Manage MY Funding Over a year. I do Not appreciate being infantilised. There Are Also Serious etical concerns Which I Absolutely endorse…please see “Dangerous Future” In NDIS Tech Experimentation
Independent Assessments
Submission 322
The LAC should be a source of support rather than be another combative point of contact for PWD and carers. LAC should support people in gaining access to the NDIS and streamline the system. As a tertiary educated person it still took me a year and a regression in my disability to access the system. With no alternative supports while waiting, I would be literally dead without my children taking care of me. There is no central point to go for case management…the LAC should provide this support.
If the NDIS is over-prescribed then increase funding. People’s disability needs aren’t an accounting issue. Besides which I believe a majority of jobs created in the economy since the introduction of the NDIS has been from jobs related to the NDIS. It would make sense to grow this support rather than set up a system to reward “mates” with sweet contracts (including the indie type card that is in the planning stage).
Listen to PWD and peak bodies, etc to find out what PWD need. Policy decisions shouldn’t be made without effective and meaningful consultation. It should also pose more solutions than problems or questions.
A framework must ensure changes being introduced are effectively managed so as not undermine PWD civil liberty risks (and includes Blockchain technology). The basic tenets of NDIS give choice & control allowing them have full life within limits reasonable necessary; both these undermined proposed change…pose serious ethical transparency concerns.
the other issue involves removing State Ministers discussion about NDIS/centralising power Federal Minister - Allowing NDIA delegates alter remove funds push States justice issues /make choices regarding reasonableness necessity undermining AAT previously gym memberships sex workers air conditioners where likely delegate decide day expenses –not disability related even though process decided they were disability related could include house cleaning example: it daily expense but some people disabilities cannot do housework.
Independent Assessments
Submission 322
have the same starting point. It excludes our disabilities from the discussion. We become invisible again, and worse centralizes decision- making with the abled. Refer to the earlier example of meal prep and delivery. Meal prep, cleaning, temperature regulation support for some (yes, me) are not a lifestyle choice. I cannot do them. Please do not endorse centralizing decision-making with the Federal Minister. Decision-making should be collaborative and include Federal, State and advocacy groups to ensure best outcomes.
HANDS OFF OUR NDIS!