Submission

                                                07 OCT 2022

Dear Committee,

This submission will look at the culture of the NDIA from the perspective of the participant. The aim is to shed light on both the quantitative, but even more importantly, the qualitative outcomes, which pertain to the nature and character of capacity and the effect on participants, service providers and NDIA staff. The participants feel the brunt, or benefits, of outcomes first as they are most vulnerably exposed due to their dependence on the system.

I write as a father of adult children, of whom have profound disabilities; a daughter, who has a profound, treatment resistant mental illness called schizoaffective disorder; and a son, who has profound spastic quadriplegia (cerebral palsy), autism and blindness. They both live at home and are supported by my wife and myself on our property. They are both NDIS participants.

This submission will concentrate on our son as he has received disability services both before and after the inauguration of the NDIA, providing an opportunity for comparison. In the case of our daughter, mental illness, or specifically, extreme mental illnesses like that of a schizophrenia diagnosis, are proving too challenging for the NDIA; categories are too restrictive while expectations of positive outcomes are unrealistic, placing pressure on the mentally ill participant to show signs of functional recovery out of keeping with medical/psychiatric assessments. The NDIA needs to work cooperatively, with government and private mental health sectors, to provide an integrated service, especially for participants with diagnoses of schizophrenia and bi-polar. There is very little out there, and certainly no coordination or follow up in the community for people suffering severe mental illness. This is especially true for those living with daily psychosis as a base line, punctuated by severe episodes, and whose psychosis is not restricted to the episodes alone, which has become a common, detrimental presumption evident in my experience with the NDIA. My wife recently wrote to our local member, Dr. Gordon Reid, highlighting these challenges and the need to address them.

Despite the extreme nature of our son and daughter’s disabilities, they both give out enormously and generously to those who are willing to receive what they have to offer – to those who want to believe in them. Accepting them, appreciating them, requires acknowledging their personhood as extremely disabled people. If we turn away from the severity of their disability we’ll never fully appreciate the magnitude of their achievements. Tokenisms, shallowness, are things that disabled people keenly see through. Full appreciation, of who disabled people are, in their disability, should be the starting point of a culture with the capacity for worthy, honourable outcomes.

The presentation of the submission will be as follows:

• Firstly, I will start by making some broad assessments of aspects of NDIA culture based on the impact of personal experience. Please bear with the negative nature of these observations, as it is my intention to write in an irenic spirit, as there is

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too much hurt and angst surrounding these matters, both in the disability community as well as society in general.

Secondly, I will give one or two brief examples of interaction with the NDIS in its approach to dealing with the complex needs of our son, which will provide context to better shed light on culture. These will deal with the initial response of the NDIS in comparison to how our son’s needs were addressed prior to the NDIA (in the case of NSW, through ADHC).

I will try to conclude with causative effects of culture on capacity, with the intention of suggestions to generate better outcomes. The object will be the enhancement of a more honest personal/relational approach with greater capacity for respect directed to disabled people. I don’t think this can be achieved without reflecting on the legislation. Looking at the legislation in order to see its effects on culture and capacity is probably too big a task to be undertaken here. However, prior to final conclusions being drawn, foundational flaws contributing adversely to culture and capacity outcomes will be noted. These will also be deduced from the experience with our son.

The NDIA presents as an inaccessible edifice. Someone once mentioned conversationally: It’s like a monolithic structure without windows or doors. This I think is a true representation. Is there anyone in there? A good culture must embrace functional accessibility. (I discount the 1800 number for accessibility as the staff manning it seem too far removed from the processes affecting outcomes. Neither have they been very good at general information, although I haven’t contacted them recently, mainly due to very low expectations based on earlier contact).

Lack of accessibility affects a further cultural failure of the NDIA: Operating on a very impersonal level. The NDIA is both impersonal and depersonalizing. All operatives and delegates hide behind the legislation, as if behind an impregnable barricade; a fortress separating them from the realities and frustrations of the world of the disabled, from which ironically, they pronounce the key virtue of “personalized” plans, dispensed with discretionary power.

With little sense of accountability, delegates begin displaying attitudes of entitlement, coming across as both patronizing and intimidating to the participant and supporting family members. It is extremely demeaning to have to plead a case to someone, who is entitled to have their name hidden, and therefore is able to deflect questions and concerns without offering any explanation. From the outset an imbalance of power is established. How can this be right? How does it cohere with principles of transparency that I’m sure would have factored into NDIA original intent?

Such an imbalance of power creates a “them and us” attitude on the side of those who wield the power. This explains a culture of indifference with regard to requests for explanations on the broad scale, for example, how the NDIS systems work, to the more specific of how plan decisions have been determined, whether

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reports and impact statements have been consulted, or, in the case of two plan meetings, even read.

It is very disconcerting to have a system in place that plays such an important role in your life, and on which you are so reliant, and yet be denied access to how it works. To be fair though, it is not uncommon for NDIA staff to claim that they don’t know how it works either. This however is problematical and hardly acceptable: Being denied access to how something you rely on works, but told you have to accept it anyway. No discussion entered into, no alternatives offered.

This has the unfortunate flow-on consequence of opportunism, affecting staff, participants, and providers. When the NDIS was being proposed, our family supported it as it was presented as being a fairer, more open system of provision than what was currently in place. It sounded great. Sadly, openness and fairness have never characterized its operation.

Because the NDIS is so guarded concerning how it operates, a kind of clandestine, secretive culture prevails. This has the consequence of normalizing deceptive practices, which affect interactions with participants. We have personal experience here, however, as hurtful as these experiences have been, is there any point pursuing individual vendettas? Rather, maybe the inverse meaning of the adage “The whole is greater than the sum if its parts” applies, explaining a culture of those laboring under a very difficult, maybe unworkable system. This points to systemic problems becoming entrenched that spawn cultural patterns of dishonesty by NDIS staff, who otherwise would not act in this way.

Lastly, a culture is emerging, which if not caused by the NDIS, has been a neat fit for the NDIS to dovetail into. This is a culture where everyone, apparently, has one form or another of profound disability. This is simply not true. The term profound is bandied about ubiquitously, becoming a commonplace eviscerated of meaning, yet it remains the applicable category for the most severe disability diagnoses. This is a matter where changing the meaning of words affects language, which affects culture, which affects capacity. It also affects how people are viewed and treated. Not everyone’s disability is the same. Yet this message seems hard to get across, even within the NDIS. I was heartened to hear recently, in a political context, concern expressed for the disappearance of classic disabilities. It was like a breath of fresh air breaking through a shroud of deceit.

I will turn now and attempt to explain why the NDIS hasn’t worked for our son and why he was better off under the state based ADHC system.

Despite the extremely profound nature of our son’s disability, he has always been able to express himself. Apart from his tenacious will in making his needs and choices known without verbal communication, I have invented, a long time ago, an Augmentative and Alternate Communication (AAC) language program for his extremely challenging accessibility criteria (remember, he is blind and has very limited functional movement), providing him the ability to express his thoughts, emotions and desires in computer generated English speech.

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At his first planning meeting, as well as every subsequent one, he has made very clear that he wants to live a long, healthy, happy life, living with his mum and dad, and expressly, does not want any support workers, or to be enrolled in any day program. Instead of thinking, “isn’t that cute,” as if a year old man is ever cute, his expressed choices and desires should have been taken seriously. This goes to the heart of whether or not we are really prepared to take all disabled people seriously irrespective of achievement levels or predetermined potential. Are, for example, Kurt Fearnley, Dylan Alcott or Graeme Innis, all of whom our son has enjoyed hearing on television recently, not taken seriously? And yet, from the outset the NDIS heard what our son wanted to express, but then chose to disbelieve it. He was expressing an integral part of how he sees himself as a profoundly disabled person, i.e., a person with specific desires, and genuine and original thoughts. In contrast to the affirmation he was used to – school captain, family support etc. – he was now being seen as a disability. We had representatives, including managers from the service provider that knew him well, at the initial planning meeting, to testify to the validity of what he was saying, how he relates, and how his needs were currently being met, but it made no difference. And although the meeting was amicable, it was conducted in a contextual vacuum. Therefore, from the outset the “one size fits all” procedural paradigm became evident. I didn’t realize how determinate the first meeting would be in establishing the pattern of forcing individual circumstances into the NDIS structure.

The way he was treated at the second plan meeting was anything but amicable. The planner’s attitude was combatively dismissive, which was a pity as I had prepared meticulously with excellent reports by professionals, who knew and understood our son, including excellent psychology and AAC reports, and a complete inventory of his disability equipment, provided by Enable NSW, as the NDIS was just about to end its relationship with their services and I wanted to make use of Enable’s excellent records. To my mind the reports provided for this meeting have never been read, even though I have asked for them to be consulted in preparation for subsequent meetings, now conducted via phone due to Covid.

What we were confronted with then, and what has become even more entrenched as the NDIS experience has progressed, is a system that is extremely rigid, extremely conformist. This has been the biggest problem and number one impediment to it being helpful. More than ironic, tragically ironic: person centred choice and control – definitely not – nothing could be further from the truth. Broad brushstroke, cookie cutter, you must fit in, must conform, is the undeniable experience in our son’s case. And it continues.

This was the new system, and there was no alternative, no going back. And so, with our son, we live with the disappointment, accept it somewhat philosophically, outwardly stoical, and try to make the best of it. The pertinent question then becomes: How did ADHC achieve better outcomes, especially factoring in the financially smaller, block based funding available through them, and why is the NDIS so comparatively straightjacketed? Thinking through this

question has been important, leading to the following conclusion: ADHC knew us, our son, and how he was supported by his family. When he finally got rid of his last workers in 2007, an excellent Home Care team that provided a daily shower service, it was no surprise to them. They knew him, laughed with him, joked with him, encouraged him with the service, and, when the service became untenable, due to his strategies to bring it to an end, were able to relay his choices through a management structure that was able to visit with the family and put commensurate measures in place to optimize his care, as it was, now solely provided by his parents, which remains the case today. The key was that ADHC, for all they might have been deficient in, took responsibility, were regional, relational, and flexible.

ADHC applied flexibility to meager block funding to provide goods and services that helped us practically. Most importantly, their initiatives elevated our self esteem, which really boosted social acceptability. And this was all led by our son, whom, I’m sure, sat higher in his wheelchair during the years of benefit from that program. I had detailed this in an impact statement provided in the dispiriting second plan meeting mentioned above. Apart from providing details of how and what ADHC provided, it also informed of how the withdrawal of this provision, without adequately replacing it, meant that our son was now worse off. The only response from the NDIS was to tell us that our son had to fit in to the new system.

I will now make some observations on NDIS legislation in relation to culture:

The NDIA has replaced a social welfare delivery of disability services with a market economy model. The effect of this for all participants should be the subject of an inquiry, as I feel a lot of participants would prefer, and therefore deserve to be offered, a social welfare model.

The market economy model engenders a competitive culture. At its current stage of development the NDIS resembles something akin to the Wild West. The top gunslingers are businesses looking to optimize/take advantage of government money. Participants can feel vulnerable and intimidated by pushy businesses. Also, when inflated, or spurious charges, appear on invoices it is very difficult for participants or their carers to challenge them. The simple fact is that we depend on many of these companies; especially for specific disability equipment, and can feel pressured to keep on good terms with them, often having dealt with them over many years under less direct funding arrangements.

The culture engendered by the new market economy model presumes a level of assertiveness on the part of participants. This is a cultural change that a percentage of the disabled community will not want, or be able, to embrace.

The pressure put on participants to sign service agreements, especially prevalent among therapy providers, underscores the pressure of economic imperatives created by the NDIS model. Previously, the social welfare model protected disabled participants from this economic pressure.

Observations Regarding NDIS Cultural Dynamics

Most (all in my experience) service providers do not know that signing a service agreement is at the discretion of the participant. Rather, they make it a mandatory condition of applying for service. If you point them to the legislation it really makes no difference; they tell you that they can’t function without a service agreement, which is their right to impose. This underscores the fact that the culture created by the market economy system gives these businesses the upper hand at the expense of the disabled participants.

The market economy system is detrimental to the true worth of disabled people in two interrelated ways. This is experienced, on the one hand, in the pressure that the disabled person may feel to overcome their disability to the extent that they can go on to become an economically contributing member of society, thus validating the worth of the NDIS, and on the other hand, while undergoing this process of development, realizing that the NDIS is making them a resource commodity for the benefit of the business community. In these matters, the people most disadvantaged are those who are most severely disabled. These are the ones who are in danger of being marginalized within the system. This needs to be recognized and internal infrastructure put in place to see that this does not happen.

The economic focus of the NDIS has created/legislated a nasty bifurcation between what is referred to as formal and informal supports. Reading NDIS policy on this matter; Operational Guidelines, Specific Supports, Sustaining Informal Supports (11, 11.1) is dispiriting and demeaning. In our case, we are the only supports for our son, that is, we provide both the “informal” and “formal” supports, 24/7, 12/12, rendering NDIA operational terms meaningless. The nature of our caring role supersedes and defies NDIS categories. It has been of greatest disappointment that no one in the NDIS has ever wanted to discuss this with us. To the contrary, they are always anxious to “quickly move on.” Maybe this underscores the impersonal culture, which when pushed too far becomes dehumanizing. This is the type of inflexibility that needs looking into. Our caring role honours and supports our son’s choice. This is a moral and relational consideration that the NDIS chooses, so far, to willfully pretend ignorance of. But then again, they’re limited by their legislation. So there we have it: The legislation has a dominating effect on staff, who then reflect this same domination onto participants. Good legislation runs smoothly in the background helping, rather than hindering, human interactions and endeavour.

Lastly, the inclusion of the Carer Respite Centre under the NDIA umbrella is disappointing. Counselling is not a substitute for respite. At least this provided a good laugh with the operative on the Carer line; she agreed that counselling was probably the last thing I needed. Once again however, this is an example of the “one size fits all” legislative presumption, the highlight, or rather lowlight, of NDIS culture.

Analyzing each cultural observation noted is probably counter productive and would make this submission too long. Looking for a common theme/s may be more productive. Many of my observations surround the areas of accessibility, secrecy and defensiveness, combined with an impersonal, technocratic,

administrative process

In seeking a remedy for cultural change the aim should be to change the culture of delegates and all staff, who interact with participants, in such a way that they appreciate and take responsibility for their role as intermediaries; being a bridge between the legislation, operating procedures, and the participants. Essentially, softening the blow of the legislation’s totalizing effect.

Reasons hindering a change in culture at this point need to be discussed. I suggest that size, ambition/success orientation and the newness of the NDIA are factors. The NDIA needs to start the process of establishing a culture that provides moral and community responsibility for the disabled. This is a key point of change. Presently, it appears to occupy solely the role of distributing funds. Such a change of culture must begin from the top down. Staff should know that management support and encourage a personable, caring, interactive approach with participants.

The cultural problems stemming from my criticism of the “economic” m model are more systemically entrenched within what I think is a foundational flaw undergirding the legislative approach. Given a choice, I would prefer scrapping the current system and starting again. As this may be unrealistic, and not the choice of all, I ask for the creation of an adjunctive subsection to oversee the provision of services for those, who would be better served by a social welfare model. I feel this would be a better system of service delivery for the vulnerable within the community. It might be as simple as creating a more flexible criteria of core funding overseen by its own section within the larger structure.

If establishing a subsection is considered too ambitious, costly, or too “messy,” t then emphasis must be focused on achieving similar results by embracing the cultural shift noted above, that is, to engender a role of moral and social responsibility towards those for whom funding is being provided. I can think of many advantages to this, however, for the sake of brevity, and in bringing this to a close, I think they could be summed up as follows: A softening effect upon the legislation, allowing staff to be people focused, rather than being defensive and combative around the legislation. True, this is nothing short of a corporate cultural change; start with small, genuine initiatives, which include all staff, and you will achieve success. It is desperately needed.

In encouragement: Two areas of marked improvement over the last 18 - 24 months have been, 1) Greater ease of access for therapy services, and 2) Substantial improvement in equipment provision.

Thank you for taking the time in reading this submission, and also for your parliamentary work.

Yours faithfully,

Peter Slough

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