Thank you for your response.
I have attached a more detailed explanation of my concerns regarding current and prospective concerns about how the government manages its disability services. I would like the attached document to be included as a submission with the caveat that it is not an exhaustive document and I am willing to respond to suggestions or queries or participate in further discussions. There has been a severe lack of public consultation surrounding the introduction of independent assessments with pilots curtailed and then cancelled in favour of implementation, seemingly without adequate feedback opportunities. It continues to disempower the people most impacted by these kinds of programs and anything short of postponement displays a distinct lack of respect for the people subject to these changes.
Why my privacy should matter to you.
We all value some level of privacy and give up aspects of our privacy for some reason or another. The COVID tracing app is an example of a surrendered privacy for what its user believe is a common good. This often sits with the attitude of ‘having nothing to hide’ and ‘if you do nothing wrong then why does it matter?’. My privacy boundaries have shifted significantly from a similar view in the last 15 years. There is usually (but not always) a trade off involved and my information was not always freely given, or the trade off was not always worth it. In fact, writing this is a trade off. I will share with you some personal information in the hope that a better understanding of the true impact of disclosing personal information will give pause to the reader.
At first there were every day things, like explaining my personal circumstances when I was no longer able to work due to the disabilities of my children. The assessment process for each of them involved a lot of discussion about behaviours at home and some in-home visits. The trade off was accurate diagnoses of my children and government support to stay home from work and provide care. Both worthy reasons for the people involved to have a glance into my life. Both trade offs came with enormous benefits for my family.
But they grey areas crept in and kept coming. Research is for the greater good but requires sharing not only personal information but also medical information. There are protections in place but there is a point where the questions themselves in such studies can be harmful and confronting to the participants. Early intervention and school supports are also a grey area of information trade off. Early intervention often does not allow for parenting style and requires intimate information about the family dynamics to be useful. Similarly, school support workers and teachers tend to need to know more about the personal lives of children who have behavioural challenges so that the school staff can be more supportive and understanding. Family difficulties are not private in homes with disability intervention or therapeutic services. That was a permanent adjustment I had to make early on, regarding privacy and in order to gain appropriate support and understanding.
When my husband was killed several years ago, most of the people I knew who attended his funeral were support workers or therapists. That initially sounds quite lovely, that they cared about my family so much, however the reality is that not a single person who was there that day still works with us. They are long gone. Some moving on a matter of weeks after the event. There have been literally dozens of service providers, some only lasting weeks, with the longest lasting being about four years. People who were around to support my children and me disappeared in the never-ending rotation of providers that my children and I are expected to form working relationships with. But the relationship is one of imbalance from the start and the mental and emotional damage of
Surrendering Privacy
surrendering my privacy to endless line of professionals is not insignificant. It is a cost to pay to have ongoing supports.
Likewise, NDIS plans do a lot of good for a lot of people, but they also come with a significant privacy trade off. Every single year (in fact for me, twice a year as I represent my children for their plans and then six months later, I do the same with my own plan) I need to explain my life to another stranger. Not once have I had the same planner, despite several requests. I have had to stop the car on the way to my plan reviews to vomit at the thought of once again explaining my circumstances to a stranger, preparing to fend off the usual questions such as “and what about informal supports, don’t you have anyone who helps you?”. Or even more unsettling comments such as “my goal for your children is to get them off plans permanently”. So privacy trade offs, power imbalances and trauma triggers are what is required for my family to access their NDIS plans. But it doesn’t stop there.
Most recently, NDIS says that I can have a special bed due to my disability, but they will only provide a single. So NDIS get to have a say in my private life and sexual life They don’t just ask for my information, they evaluate and assess based on a set of values that ignore my own to determine whether or not whether I am entitled to have a bed I can invite someone to share with me. For me to argue against that, my therapists are required to consult me and report on my sexual needs to a government agency. The pay off in discussing my personal and sexual needs with a government agency is that I might have the freedom to have a typically sized bed for a 40-year-old single person. I also might not, and I would have given that privacy up for no reason. The dehumanisation is humiliating.
And then there are the providers themselves. My physio not only recently had her kids popping their heads into the shot a couple of times during a telehealth session where my urinary incontinence and my obesity was discussed, she also had her husband standing in the back of the room, looking at the screen. What if he recognised me, or me, him? When I gathered the courage to express my discomfort, I was told by my physio that he was just looking into the backyard. My privacy, already surrendered to so many strangers, wasn’t just breached, but my unease at the situation was dismissed. How can the covenant of surrendered privacy and promised protection not be irreparably broken? What do I do now, though? Find yet another stranger to tell intimate and frankly embarrassing things about myself? Accept the breach and no longer be open about how I am functioning? Either way, I lose. I’m no longer confident this trade off is worth it and I am considering cancelling physio from my plan as a result. Don’t get me wrong, I need physio. Just not at this cost.
I get home help to do tasks around the home I cannot do myself due to my disability. I give up my private space to benefit from that assistance. Home help came the other day and accidentally snapped the door off my dyer. Yep, she has insurance, but because I need people in my home to help me do daily tasks I also give up my private space and my personal belongings to strangers. My things will get broken because of strangers using them. My children, both with their own disabilities and their own requirements to share their personal information in return for supports have to accommodate a stranger in their environment regularly. A stranger doesn’t know the things in that bag weren’t to be thrown out, they were there to be kept together. They don’t know that the scrap of paper wasn’t rubbish, but appointment information written in haste. The people who come into my home are not people I would choose to socialise with. They have access to parts of my home that visitors do not. Yes, I can see the floor again and I regularly have a clean kitchen, but I also have strangers in my home who like to talk to me and tell me their views on covid, or worse, religion. You don’t get to be choosy with home help.
The other day I had a toilet seat attachment and a shower chair delivered to my home. The delivery person (not a courier, but a worker for a local disability equipment provider) breached my privacy by
- handing my equipment to my visiting father in law and talking to him about what was in the boxes (mortifying) even after I asked him to hand it directly to me. A little more of my personal humiliation to share around. There should have been no trade off in my privacy there, but there was.
Soon the government will make it mandatory to have ‘independent assessors’ visit my home to decide how disabled they think I am and my children are. The usual reports provided by actual therapists who specialise in the areas of disability we experience and who work with us will be disregarded so yet another stranger with zero knowledge of my life can enter my home and decide, based on a single and short visit, how deserving I am. That stranger will need to know about urinary incontinence, about my sexual needs, my mental health and previous trauma and anything else that contributes to impact my functioning in order to get appropriate support. If the NDIS has not yet been able to provide me with a regular planner so I don’t become so distressed at constant strangers that I vomit, I very much doubt that it will be any different with a home visit. So a new stranger visiting my home every six months. The one place that is supposed to be my space, that I control is going to be intruded upon by government contracted (let’s not get sucked in by the use of the term ‘independent’ in the title) inspectors. To learn what, exactly? There is no trade off here. There is nothing these inspectors can learn by intruding into my home that cannot be learned from my current level of privacy concessions which include provider reports.
Most people get to decide for the most part who gets their information and how much to share, not to mention who is let into their home. There are others who have to give up more of themselves to be able to get access to the right supports just to get by on a day to day basis. There are also many people who have to give up even more than that and need help to shower and toilet etc. I’m somewhere in the middle of that spectrum of giving up privacy and bit of dignity in order to get help. Today I am a bit fed up with the whole idea that a lot of my life is up for assessment and that what I say to professionals about private parts of my life is not being protected. Worst of all is that it is not being respected for the massive surrender of power that providing personal information constitutes.