Submission on the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition.
I
Background
I have decided to tell part of my story to this committee due to the serious impact the NDIS has had on my life.
It has been a blessing and a curse. It has caused me a great deal of ongoing anxiety and increased the impact of
my disability but it has also shown me that it could potentially be a very positive part of my life. My disability
results from very long term complex post traumatic stress disorder (C-PTSD) and graves orbitopathy, the latter
of which has caused deterioration to my vision that also aggravates the C-PTSD.
May 2017 Page 1
My Experience
My disability unfortunately in not restricted to the psychosocial domain. In 2004 I developed Graves Disease
including Graves Orbitopathy, and now have permanent functional impairment of my eyes resulting in vision
problems. It is an impairment that exacerbates the impact of C-PTSD. When I initially applied to the NDIS I
requested that my disability be accommodated in the initial interview. I explained that for me that meant being
interviewed only by women. When in due course I attended that meeting I reiterated my request but rather than
accommodate me a man was brought into the room and remained present for the majority. This prevented me
from being able to talk about my disability and the meeting was stressful in the extreme. Subsequently I was
rejected as a participant. I appealed this initial decision through the internal review process and provided more
information about my impairment but I was again unsuccessful. I accepted the decision and assumed I was ‘not
disabled enough’. Some months later, with assistance from RIAC I lodged an appeal to the AAT. Just a few
hours before the matter was to be heard the NDIA decided to include me as a participant.
My first plan commenced on 1 May 2015. I was slated to self-manage, sadly it took me five months to find out
what that meant and locate suitable support providers and get my plan working. Many of the supports I
requested and were recommended for me were denied. Some of the supports to help mitigate the functional
impairment of my eyes that were denied were: prism lenses, high visibility phone, large blind spot mirrors,
increased transport (from bottom tier). Others related to my C-PTSD were also denied – safety equipment and
assistive technology related to safety such as an extension to my fence, locks on my windows and doors. I
lodged several internal review requests and all the previous decisions were confirmed, the denied supports
were still denied. This denial meant that I had to lodge three further appeals to the AAT.
Rather than go through every aspect of the chronology presented below and elaborate on how distressing it has
been to be put through this process, I will focus on the main problems I have faced. They are:
-
Arbitrary nature of decisions about supports
-
The complete failure of internal reviews process
-
Problems with NDIA requested assessments due to the culture of charities who provide both assessments and supports
-
Failures in disability sector assessment process exploited by the NDIA to deny supports
-
Retaliation by NDIS staff, cancelling existing supports
-
The abuse of compensation provisions to force people with mental illness to apply for crime victims compensation, or threaten such.
-
Adversarial nature of the AAT process being used to derail people who seek supports
-
My experience tells me that the decisions about what supports to fund are made in a disjointed and arbitrary fashion and decisions often ignore the recommendations of competent, qualified professionals even when the
May 2017 Page 2
NDIA has funded their reports. In my case an OT with AMPS training, as required by my planner,
recommended assistive technology/home modifications to increase my safety at home, this included fence
extensions, a front door peephole camera with small screen, deadlocks to the doors and locks to my windows.
These were simply disregarded. The same OT recommended she be given additional hours to conduct an
“intervention” designed to make me feel safer, which was funded. The decision to fund a support that addressed
my perceptions of safety and not my actual safety seems arbitrary. Likewise funding for blindspot mirrors that
cost about $89 for a pair was denied and then countermanded by a new rule that assistive technology funding for
amounts less that $100 did not require approval. Assistive technology funding ($420) for a mobile phone that
could be seen was originally denied, even though it was recommended by an OT and listed in the price guide,
only to be funded just prior to the AAT hearing where that decision was appealed. I could give more examples
that show the same pattern.
- To date I have requested at least 4 internal reviews of decisions in an attempt to have the NDIA fund the supports that have been recommended by the experts the NDIA has required me to see. Not a single decision
has been changed due to an internal review even though in each instance the additional material provided has
included further supporting recommendations from relevant professionals. Internal reviews routinely
rubberstamp the original decision. They seem to me to be simply a hoop to jump through designed to exhaust
the participant in the hope they will not proceed to lodge an appeal with the AAT. In my case decisions have
only been sincerely reconsidered when a hearing of the AAT is imminent. This points to the complete failure of
internal reviews process.
- As mentioned previously My disability is both psychosocial and sensory. As part of my sensory assessment I was required by the NDIS to be assessed by an orthoptist at Vision Australia (VA); the NDIA had an
arrangement with VA as an in kind provider. Unfortunately, although I had a prior bad experience with VA, my
planner at the NDIA refused to allow me to have the assessment with an alternative orthoptist.
When my planner at the NDIA insisted I go back to VA for an assessment I was reticent to say the least.
Knowing I had no choice I attended the assessment. During the assessment I was told by the orthoptist that:
“little kids with cataracts could not get glasses [from the NDIA] so why should you?” I was surprised but said
nothing. Clearly the orthoptist was not going to recommend that I have prism lenses even though I had been
wearing them for years to correct the ocular pain and diplopia resulting from Graves Orbitopathy.
May 2017 Page 3
In my opinion it is a legacy of the way people with disabilities have been seen by charitable organizations who
provide support services. We are expected to accept handouts and be grateful, charities do not necessarily see us
as having a right to a basic level of service. The NDIA should recognize this and not compel us to use services
they choose. The NDIA should work to eradicate charity as a mode of service delivery.
- Further to the last point the NDIS should encourage best practice in the provision of assessments and allow participants and applicants to appeal or have a second opinion when it comes to assessments. Failures in
disability sector assessment, such as the failure by VA to recommend prism lenses, should not be exploited by the
NDIA to deny supports.
- One of the most damaging things I have experienced in my dealings with the NDIA has been the cancellation of my supports. In the past I had been funded to access the community for social and recreational purposes. This
was important in addressing the isolation C-PTSD causes me. According to both my psychologist and the social
worker who completed my 2016 annual review, those funded supports were extremely beneficial and effective in
reducing the impact of C-PTSD in my life and improving my mental health. It was quite surprising then that the
plan the NDIA provided after that review came with conditions based on spurious reasoning that expressly prohibited the use of funds for those supports. Ms X reported that she had never seen a situation like that before.
In my opinion the NDIA prohibited my supports in order to undermine my capacity to represent myself at the
AAT. No explanation was given as to why supports that were in accord with the legislation one day were
suddenly all contrary to it. As may be predicted I am once again housebound.
In December 2016 I requested an internal review of that decision and five months later I have had no response to
that request. When I call the NDIS to ask about my application I am told that no decision can be made while other
matters are before the AAT.
- While the AAT was holding the hearings in relation to my second AAT appeal the lawyer for the NDIA chose the break before I was scheduled to give evidence to approach my lawyer seeking information about whether I
had applied for or received compensation for the events that caused my disability. It was known to the NDIA that
my C-PTSD was caused by extreme sexual abuse and torture in my childhood. It has seriously impacted my
mental health and it was very distressing to me to have it raised at that time and in the manner it was raised. It
seemed like a deliberate strategy to undermine my capacity to give evidence on my own behalf. I instructed my
May 2017 Page 4
lawyer to advise the NDIA lawyer put her request in writing. In due course a letter with questions from the NDIA was sent to me attached to an email.
This issue, of compensation for the criminal acts committed against me in my childhood has been extremely
traumatic for me, it is something I have been fighting for over 25 years or so. It may be the only form of justice
available to be but it is still illusive. Just making one application would be very difficult for me but the crimes
committed against me number in the hundreds, occurred in three different states over a period of ten years and
involve innumerable perpetrators including my own mother. Despite the fact that I have identified perpetrators
no one has ever been charged. Police statements have still not even been made in relation to crimes committed
against me in two states. These are extremely challenging undertakings.
I am aware that the NDIS legislation gives the NDIA the right to compel me to seek compensation, and that for
every instance of abuse it has the right to compel me to explain whether or not I have decided to seek
compensation. It can also make application on my behalf or take over any application that I decline to pursue. I
believe the letter I received was a reminder of those compensation provisions. I believe it is morally wrong of
the NDIA to raise those questions before my testimony, I feel it is an abuse of process, and that it is wrong to
force people with mental illness to apply for crime victims compensation, or threaten such.
- The final point I would like to make is that the apparent approach of the NDIA, to confirm all existing decisions during internal reviews and force people to go to the AAT to have any decisions reconsidered, is
particularly difficult for people such as myself who have psychosocial disabilities. The adversarial nature of the
AAT process is retraumatizing and the stress results in a worsening of a person’s mental health. I believe many
people with disabilities simply accept the decisions of the NDIA as they don’t have the emotional resources to fight, this is especially the case for people with psychosocial disabilities. I know that I am exhausted now and
largely unsupported. I don’t have the energy to fight for what I need any more, and yet every year I have to fight
again even for the same resources. There are still outstanding AAT decisions from appeals made two years ago
and the NDIS has not even responded to a request for an internal review of my most recent plan, if that is forced
to the AAT I probably will not persist. For me the personal cost of being a participant is much higher than any
benefit it currently provides.
May 2017 Page 5
Attachment 1: Timeline of engagement with the NDIA
2014 - Applied to become a participant Impairment caused by C-PTSD and Graves Orbitopathy Application denied Lodged internal review Review confirmed original decision.
2015 - First appeal to the AAT Lodged Issue: Inclusion as a participant
Legal Aid granted
NDIA included me as a participant the night before the AAT hearing.
May 2015 - First NDIS Plan commenced- self managed
Issues: Request for some supports denied – prism lenses, safety equipment and modifications, assistive technology (phone), appropriate transport funding (from bottom tier) large blind spot mirrors. Internal review of the denied supports, still denied.
August 2015 - First supports received
Late 2015 - Second appeal to the AAT Lodged Issues: safety equipment and modifications, assistive technology, high visibility phone, increased transport funding from bottom tier
Legal Aid Granted
Late 2015 - Third Appeal at the AAT lodged
Issue: Prism lenses
Legal Aid refused
Late 2015 - Fourth Appeal at the AAT lodged Issue: Large blind spot mirrors
Legal Aid refused
September 2016 - Annual review Review of plan conducted with Nerida Burnham from Melbourne City Mission.
October 2016 - Second NDIS plan commences New restrictions placed on what supports I am permitted that results in the cancellation of most of my supports and I become largely house bound once again All the recommendations by were refused except two
November 2016 - Second AAT appeal heard
November 2016 -Third NDIS plan commences The plan was reset to overcome a technical issue. The restrictions remain.
Late 2016 - NDIA approve funding for high visibility phone
December 2016 - Internal review application lodged I requested a review of the provisions of the second plan that place severe restriction upon my supports
April 2017 - Fourth AAT appeal withdrawn Issue resolved by new NDIS rules regarding assistive technology
May2017
Internal review requested in December 2016 still outstanding, currently receiving no supports except minimal employment assistance and psychology services. Second AAT Appeal decision still pending from November 2016 Third AAT appeal regarding prism lenses yet to be heard.
May 2017 Page 6