No "opt out" for NDIS
Participants It is not unreasonable to expect people to be required to provide some
By Lee Archer - January 5, 2019 NDIA is asking Participants benchmark questions about their health, household
NDIS Opinion income, and family dynamics. This information helps us understand the effects
M and efficiency of the Scheme, but how does this balance against the privacy
y 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
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
intrusion? Do Participants feel they can say no? And how does it compare with
what other Australians are asked when utilising similar services?
medical information they want to share. The concept of privacy as a right The intrusion gets particularly pointy when it comes to housing. A huge number
for consumers and citizens of Australia isn’t always awarded the same of resources are being pumped into Specialist Disability Accommodation
seriousness for people with disability. For some people, the NDIS planning (SDA). The NDIA is under enormous pressure, as this could break the Scheme
process and provider engagement has increased the privacy intrusion into if it goes wrong, but stories from advocates indicate that this has led to some
their everyday life that would not be acceptable to most Australians. particularly dodgy stuff happening around goals. Anecdotally, DSC has heard
Commodifying your inner self to buy a plan that Participants seeking SDA have been pressured to change their goals from
The intention of the NDIS is noble- that people with disability have the something like 'I want to live independently' to 'I want transitional housing.' So,
same rights and opportunities as all Australians to live an 'ordinary life.' This is this still the Participant's goal? Or has it morphed into the NDIA's goal for
encompasses all the same life milestones, trials, tribulations and successes that person? If goals are to be so fundamental to the Scheme, then they need
that most Australians take for granted. So big tick NDIS. That is exactly to be authentic and belong to that person.
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
Provider engagement
what the NDIS is all about: the NDIS should be removing the barriers that The intake process for some providers can be extensive, and sometimes take
disability that can present in living an ordinary life. the form of intake documents 10-30 pages long. This is an unnecessary, risk-
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
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
disability to take control over the direction of their own lives. For some people Participants.
with disability, this may be the first time that they have been asked how they Who owns your dreams?
want to live their lives.
Capturing goals and aspirations is a legitimate framework for administering
So what is the issue? The personal cost of this system is not one that most of a complex Scheme. However, goals need to be captured in a sensitive and
us using government services have to pay. I have used health, physiotherapy authentic way that recognises the intrusion this represents to some people.
and other services all my life. Not once have I been asked to cough up my Capturing data should not go beyond what people experience in mainstream
broader life goals, and if I had been asked, I would have probably told them to services. If the NDIA are serious about an 'ordinary life,' then this needs to
mind their own damn business.
translate into an ethical approach to data collection. A person's goals, dreams,
People with disability can have a very different experience of privacy to aspirations and identity are their own, not the NDIA's to grab. They are that
most Australians. Unfortunately, people with disability can be quite used to persons to give - willingly, and consciously.
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.
That is the ultimate choice and control, baby.
“
Source: www.disabilityservicesconsulting.com.au/resources/no-opt-out
”
The word ‘respite’ has definitely gone out of fashion.
People reject the implied assumption that people with
disability are something that you need to take a break from.
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EBL QUARTERLY NEWSLETTER 13