My Submission regarding the Independent Assessment Pilot Program

Dated 28 March 2021

I recently participated in the pilot program for the NDIS Independent Assessments. This is the last time I can in good conscience refer to them as ‘independent assessments’ as I fail to see how a private company with existing contracts with the government can be independent without being able to see and understand the provisions of such a contract and the kinds of benchmarks the government require to consider the agreement terms met. I will refer to them from here on as ‘assessments’.

I didn’t really want to take part in the pilot because I don’t agree with the proposed changes, and I knew my wellbeing would be risked by the new model. However, I felt if everyone who didn’t like the new model declined to take part in the trial and provide feedback, then the feedback would be unreliable and likely skewed in support of the changes. I also felt that while my wellbeing would be at risk, I had some supports and felt that my ability to express myself could be used to help speak for others who may be unable or unwilling to participate.

The initial contact from the business providing the assessments was a bit of a mess. I struggle to use the telephone due to severe mental health issues and require all communication to be via email. This request (made upon registration) was ignored by the business and I received calls without any warning.

This issue is not unique to the business doing the assessments as has been a common occurrence with most service providers and statutory agencies, causing significant distress and anxiety. In all instances it is difficult not to wonder if the initial contact begins with a disregard for my personal circumstances (always advised), how can I possibly engage with the service on a fair and equal footing? I am already at a disadvantage before a word has been spoken. Despite databases and systems which allow for participants to be flagged or alerts to be added, staff either don’t look for those alerts or don’t care due to their own pressures.

When I requested that the person from assessment business contact my support coordinator to make arrangements for my participation, the person from the business did not know how to respond. She initially replied that they were unable to communicate with a third party. I explained that didn’t make sense given the purpose of an NDIS funded and approved support coordinator is exactly for this kind of thing. The conversation ended with the person hanging up. Another call was made to me (despite my further request in the previous call for email communication) with the exact same request and confusion. There had been no communication between the first caller and the second one. This time I was at least asked for the contact details of my support coordinator. After some false starts a date and time was set.

On logging in to the online meeting room for the assessment, my support coordinator and I waited for twenty minutes at which point I received a phone call (again, unwanted and unwarned) from the assessor, who said something like she thought the appointment was for half an hour later. When I confirmed we were both waiting in the room and had been waiting for a while, she requested I wait a little longer so she could have her lunch break. I requested the meeting go ahead as planned as I had other commitments in the afternoon as we were already running late. The assessor was frustrated but logged on.

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She introduced herself as an OT and asked if I had any questions before starting the assessment. I asked if she had any experience with disability and she replied she had none and had only been working as an OT in aged care for a few weeks. My diagnoses include several serious mental health issues as well as medical conditions and autism. It was disconcerting to think that the person who would be determining my annual funding had no understanding of disability or any real life experience in disability or mental health issues.

I don’t think it is unreasonable to expect the person making such an assessment to be streamed for certain plans. Certainly an OT is not experienced or trained in understanding how to appropriately use and apply the assessment tools for participants with serious and complex mental illness or for various medical conditions which cause disability. It is one thing to ask a question in a list. It is another to understand how the response to a question translates to real life. This issue was apparent throughout the meeting.

One example was a question about whether or not I knew when I need rest for my physical issues. I replied I did and the assessor ticked the box and said ‘great so you know when to rest’. The reality of course is far from that simplistic. I may know when I need to rest my body but my role as a parent and carer of two children with multiple disabilities will often preclude me from being able to be able to rest. My part time work and part time study also often mean I am not able to listen to my body, or that if I do, once my work or my children will be attended to and my own self care and household duties will need to be completely ignored. It is not sufficient to tick a box saying I know when my body tells me I need to rest if I am unable to act on that knowledge.

If there are not appropriate follow up questions and provisions in the process for clarifications, nuance and individual circumstances then individual needs cannot be considered. It results in vulnerable people feeling they are failing at life, as the check box tells them they know when they need to rest and so if they don’t, they are not listening to their bodies and not taking personal responsibility.

Another part of the assessment which demonstrated the unsuitability of the assessor for the purpose was the first part of assessment where the assessor asked me to ‘show her something’. That was literally all she explained. As a person with autism and related difficulties with understanding people’s intent, I found the lack of direction confusing and frustrating and the assessor seemed either unable to understand that I could not see what she wanted or was unwilling to explain further. It came to light the assessor was requiring me to show her around my house and let her watch me perform daily tasks.

Even as a virtual assessment, I found this portion of the meeting very intrusive and triggering. My mental health means that I struggle to engage with service providers personally. I have spent over fifteen years communicating with service providers for myself and on behalf of my children, which unfortunately includes a substantial number of inappropriate, negative and damaging interactions. As a result, I am protective of my personal space and who I allow to breach my personal boundaries and interact with myself and my children (who both experience harm from unsuitable/inappropriate supports and service providers). With the new assessment model the choice of who comes into my personal space is taken from me.

Not having the choice and control over the one space in my life where I get to say who sees my home and myself in an unfiltered state is incredibly damaging and a genuine risk to my wellbeing. If my funding were contingent on allowing an unqualified, inexperienced stranger into my home who had already demonstrated a lack of respect for my boundaries by not emailing me as requested, it is

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likely I would allow the funding to lapse and forgo my supports. I know I am not alone in feeling this way. It is difficult not to suspect that this is a predicted result once the new assessment model is implemented as I am certain it would temporarily reduce pressure on the welfare budget. However, an initial financial boon to the government if a large group of people suddenly allow their plans to lapse can only ever be a short term gain. The long term financial and reputational implications of unwell people being unsupported in their daily lives will result in abuse, neglect and almost certainly some deaths, requiring significant resources to manage and mitigate.

During the two hour long interview (a long time to be unavailable to children with disabilities) I was asked a large number of questions and yet the interview still seemed superficial and incomplete. There were no questions that can I recall about my mental illnesses, mental health and wellbeing or about any goals or aspirations I have. There was certainly no consideration at all given to me as an individual and what I want for myself and my future. Choice, control and personal goals did not feature in this assessment.

Worse than the poorly applied assessment tools, the underqualified and inexperienced assessor and the lack of respect for my stated personal boundaries was the complete lack of knowledge about me as a human being. My background, my experiences and how to engage with me so that the outcome for me is not harmful (notwithstanding the funding decision) were never sought, mentioned or considered.

As a person who has experienced severe and sustained trauma, and who has Complex PTSD with specific triggers (which would be easily inferred from my previous service provider’s reports – had they been part of the process), some of the assessment could have been tailored to avoid these triggers. My wellbeing was never given any consideration beyond the perfunctory standard which is unreasonable considering nearly everyone the assessors will be engaging with are vulnerable and have specific needs.

NDIS participants are not assessment subjects in a vacuum. We are vulnerable people experiencing varying levels of exacerbation of obvious and more subtle difficulties, with complex and dynamic influences on how that presents on a day to day basis. As a matter of respect, dignity and harm prevention, let alone as a basic human right, participants cannot and should not be treated as entities to conform with a process but rather individuals for whom the process must be tailored. Obviously, it is unreasonable to expect every interaction with the agency to be 100% perfect and well informed, but the agency can and should do better to avoid the inevitable cascade of disengagement, impersonal and thus inappropriate supports that will precede eventual measurable harms.

There are many options for addressing safety, quality and improvement for the NDIS and its related agencies This can be achieved by:

• Investing in qualified, experienced and engaged staff, from administrative staff to executive levels with ongoing training requirements at all levels;
• Streaming participants to appropriately qualified and experienced allied health staff to apply a more comprehensive assessment;
• Requiring all assessment staff to have read all reports provided by the participant prior to assessments (whether the reports were requested or not);
• Including service provider reports in the assessments process if requested by the participant to ensure participants are able to support their claims in other ways than invasive home visits which represent a safety risk to all parties;

• In special circumstances providing complex or special participants the option to be allocated to the same assessor each year to minimise the onus on the participant to re-explain their backgrounds etc.
• Developing assessment tools in conjunction with services providers, participants and in transparent collaboration with the agency;
• Using the IT systems and databases to ensure staff accessing participant information are required to read and acknowledge alerts regarding participant requirements prior to all communications with participants;
• Providing more avenues for stakeholder feedback with transparency around benchmarking and expected outcomes;
• Providing places for external representatives on governance, strategy, policy and quality committees with clearly identified benchmarks and expected outcomes

I am an NDIS participant and I want to contribute to these processes in a positive way. I am the leader of my household. Despite coming from homelessness in my teens, an early exit from highschool, and several seriously traumatic events along the way, I am now the first person in my family to attend university. I also work part time (although the assessment told me that 19 hours per week was considered full time work) and care for two wonderful young men who both have disabilities (one of whom who is also at university, and the other is in the process of completing his VCE). People in my position who are making modest achievements despite considerable obstacles should be supported to succeed. We should be able to lead the way for our communities and families and feel proud, engaged and confident in anything which involves our own lives and wellbeing. Under the current system, I for one feel judged, misunderstood, ignored and disrespected and as though all my efforts will never amount to more than tokenism, condescension and paternalism, while oddly requiring I explain myself and my existence to unqualified strangers at regular intervals at times and in ways that neither convenient nor appropriate.

I want to engage with these processes but find the avenues unwieldy for a person of fluctuating health and despite having already made a submission to the Joint Standing Committee, feel disenfranchised and de-platformed. In fact the most recent Joint Standing Committee report referred to my previous submission and the NDIS’s response completely dismissed the premise of my submission as either irrelevant or inconsequential (the response did not address anything despite it the issues being put to them, so it was unclear which).

So when given the opportunity to participate in the assessment pilot program, I did what I thought was my duty and subjected myself to a process I knew would be harmful to my wellbeing (and it was). I did this so that at the end of the assessment I could provide productive and respectful feedback as promised. Imagine my dismay when, after I provided my considered and constructive feedback, I was told by the assessor that all feedback for these pilot assessments were for internal purposes only and would not be fed back to the NDIA. I am close to tears even thinking about how that felt given how much it took for me to participate and engage with the process.

It appears my only avenue to be heard is via these submissions to the Joint Standing Committee, so I have tried to once again make myself heard. These assessments will cause harm. The lack of trained and experienced professionals engaging with vulnerable people is a significant risk to myself, my children and others. The change of process to an increasingly impersonal, unfit and inappropriate model must result in plans that are also increasingly impersonal, unfit and inappropriate. Impersonal, unfit and inappropriate support plans are not in line with what this agency, the

Government, and the people of Australia would expect and demand. certainly, it is not what many of the ndis participants expect and demand, but to date, that haven’t seemed to change much.

as for the outcome of the assessment itself, i have heard nothing in the three weeks since i took part. not even an acknowledgment of the assessment having taken place and/or information around how to provide any feedback (whether internal or otherwise). i did ask for a response to my feedback and have not yet received acknowledgment of my feedback, let alone a response.

sincerely,