My Health Record has been all over the news, with the federal government scrambling to allow extra time for consumers to deliberate over whether their privacy is at risk and to decide exactly how much of their personal medical information they want to share. The concept of privacy as a right for consumers and citizens of Australia isn’t always awarded the same seriousness for people with disability. For some people, the NDIS planning process and provider engagement has increased the privacy intrusion into their everyday life that would not be acceptable to most Australians.
Commodifying your inner self to buy a plan
The intention of the NDIS is noble- that people with disability have the same rights and opportunities as all Australians to live an 'ordinary life.' This encompasses all the same life milestones, trials, tribulations and successes that most Australians take for granted. So big tick NDIS. That is exactly what we want the Scheme to do. Moreover, the notion of an 'ordinary life' is a conceptual winner when explaining to the broader Australian community what the NDIS is all about: the NDIS should be removing the barriers that disability that can present in living an ordinary life.
The experience of formulating an 'ordinary life' through the NDIS can be a far cry from an 'ordinary' experience, especially when compared to how Australians access other supports and services. The idea of 'goals and aspirations' is embedded in NDIS legislation and is compulsory for all Participants. Conceived to address the systematic disenfranchisement of people with disability, it is designed to provide the tools for people with disability to take control over the direction of their own lives. For some people with disability, this may be the first time that they have been asked how they want to live their lives.
So what is the issue? That shit's private, man. The personal cost of this system is not one that most of us using government services have to pay. I have used health, physiotherapy and other services all my life. Not once have I been asked to cough up my broader life goals, and if I had been asked, I would have probably told them to mind their own damn business.
People with disability can have a very different experience of privacy to most Australians. Unfortunately, people with disability can be quite used to being directed and intruded upon. This historical lack of agency has led to an acceptance that as a person with disability, you don’t own your life or that this is the sacrifice you have to make in order to access the services you need.
It is not unreasonable to expect people to be required to provide some information about themselves in order to access services, but the NDIS expectations of what needs to be given are, as the young people say, next level. In order to capture the biggest dataset about disability in the world, the NDIA is asking Participants benchmark questions about their health, household income, and family dynamics. This information helps us understand the effects and efficiency of the Scheme, but how does this balance against the privacy intrusion? Do Participants feel they can say no? And how does it compare with what other Australians are asked when utilising similar services?
The intrusion gets particularly pointy when it comes to housing. A huge number of resources are being pumped into Specialist Disability Accommodation (SDA). The NDIA is under enormous pressure, as this could break the Scheme if it goes wrong, but stories from advocates indicate that this has led to some particularly dodgy stuff happening around goals. Anecdotally, DSC has heard that Participants seeking SDA have been pressured to change their goals from something like 'I want to live independently' to 'I want transitional housing.' So, is this still the Participant's goal? Or has it morphed into the NDIA's goal for that person? If goals are to be so fundamental to the Scheme, then they need to be authentic and belong to that person.
The intake process for some providers can be extensive, and sometimes take the form of intake documents 10-30 pages long. This is an unnecessary, risk-averse practice which reflects the provider’s desire to make sure they cover all the bases. But for the person with disability, this can have the compounding effect of eroding the person’s agency, giving them less control of their history, their lives and the relationship with the provider. As the NDIS market heats up, providers should start thinking about what is it that they really need to know and do away the aspects of their intake processes that may ask too much of Participants.
Who owns your dreams?
Capturing goals and aspirations is a legitimate framework for administering a complex Scheme. However, goals need to be captured in a sensitive and authentic way that recognises the intrusion this represents to some people. Capturing data should not go beyond what people experience in mainstream services. If the NDIA are serious about an 'ordinary life,' then this needs to translate into an ethical approach to data collection. A person's goals, dreams, aspirations and identity are their own, not the NDIA's to grab. They are that persons to give - willingly, and consciously.
That is the ultimate choice and control, baby.