Anonymous – 07/10/2021

Dear Honourable Members of Parliament,
I am giving my general feedback about becoming a participant in the National Disability Insurance Scheme
(NDIS) based on the past experience I have had with trying to help my wife. She has had epilepsy for about
55 years and also has a mental health problem with anxiety and depression for about the same time. In
2017 my wife was receiving a government subsided home care package and was asked to transition to the
NDIS. However, when she applied for it, her application was rejected. We asked for a review and that too
was rejected (2018).
The NDIA gave us detailed reasons for their decision and that was really good as we could see how they
had assessed her disabilities. We could have asked for an external review with the Administrative Appeals
Tribunal but at that time I was stressed with work plus caring for my wife and also for my elderly mother
(now in her nineties) so I didn’t take up the offer.
In hindsight going through the NDIA report I can see various places that I disagree with their conclusion
about my wife not meeting criteria according to the NDIS rules.
Suggestion 1). My first suggestion would be for the NDIA to be able to put on hold an application for
becoming a participant in the NDIS while information provided in the reports is clarified or additional
information is sought. This is what Centrelink does in my experience when someone is putting in a claim
for Disability Support Pension (DSP). They just don’t reject a person’s application straight away and ask
questions later. The claimant is given opportunity to provide new reports and also be seen by a Centrelink
recommended medical practitioner before a final decision is given. This I find is the decent thing to do as
due process is followed.
The conclusions the NDIA made concerning my wife’s application by rejecting it straight away were made
because of lack of clarification with those who provided the reports, such as doctors, psychologist and
counsellor and most importantly with myself as her Carer. Neither did they request any additional reports.
So, the NDIA made many false assumptions about my wife’s disability in their assessment.
For example, the NDIA noted in their report that my wife’s counsellor had mentioned complex trauma
history but they failed to understand how this affected my wife’s mental health and didn’t ask my wife or
myself as her Carer for clarification. (My wife grew up in a home with domestic violence and had tried to
end her life by overdosing on her epilepsy medication plus as a young adult she had suffered abuse). So,
the assumption was made that her mental health problems was not permanent even though she has had
them from early childhood. The reason given in the NDIA report was because they felt that cognitive
behaviour therapy (CBT) had not been fully investigated. Once again if they had consulted with me, I could
have requested my wife’s psychologist to clarify this matter as she has been seen by different psychologist
over the past twenty years. What puzzles me is the question, would CBT be expected to work for someone
whose epilepsy causes them to have poor memory, have cognitive deficits and had only limited education?
Suggestion 2). Disabilities should not be just assessed separately to see how they each meet the criteria for
NDIS. An individual can suffer from one or more permanent disabilities and also from several nonpermanent health issues which all interact together to impair the person and make things worse. A person
with a disability should be looked at as a whole not as a composite of separate disabilities.
Suggestion 3). In the NDIA report given to us, NDIS Operational Guidelines 8.3.1 was quoted: “When
considering whether a fluctuating or episodic impairment results in substantially reduced functional
capacity to undertake relevant activities, the NDIA will consider the impact on the person’s ability to
function in the periods between acute episodes.” To make NDIS work better and fairer, please can you amend this Operational Guidelines so that people suffering with epilepsy are not being discriminated
against as it is a serious debilitating illness, as I know from caring for my wife for almost 31 years.
The last clause of this guideline is what particularly concerns me, as applications from those
suffering with epilepsy can be rejected as it is assumed that between seizures the person is not
significantly functionally impaired. This is presumably why the NDIA quoted this Guideline to us in their
report as they were using this to reject my wife’s application. There are a couple of problems with this
1) I felt that the NDIA did not really understand how it is for my wife not being able to function normally,
not having any inclination when the next seizure could occur when she would lose complete consciousness
and seriously injure herself depending on where she was. She has had numerous head injuries requiring
stiches, injured her back and tailbone, fallen and broken the glass in the shower recess three times till I
made modifications in the bathroom, had third degree burns three times in the kitchen and the last time
she had burns to 7% of her body requiring skin grafts and it took over a year to heal and after that I
stopped her from cooking and not even boiling a kettle of water as she had poured boiling water on herself
a couple of times, she precipitated seizures many times by forgetting to take her medication or accidently
overdosed on them and ended up in the Emergency department till I took over these functions. So,
whoever had assessed my wife for the NDIS seems to have had no clue of her functioning on a day-to-day
2) I feel the secondary disability which my wife has with mental health which is not episodic has not been
considered in this guideline (epilepsy and mental health) working together.
Suggestion 4). I understand that the Government wants to make the NDIS work better and be fairer. I feel
the NDIS Act concerning early intervention for a person with disability needs to be amended as it works
unfairly for an older applicant. It works fine for a child in their developmental years and for young adults
but may not be so for an older person in their fifties. I feel this law is biased against older applicants as it
going to be harder to prove the case for it.
In my wife’s situation, NDIS did not exist 40 years ago when my wife was needing early intervention,
suffering from epilepsy and depression and having learning difficulties and had to drop out of school after
year 8. Learning new skills and abilities now will benefit her as it will others and improve their quality of
Suggestion 5). My final suggestion to the Government is to consider transferring the entire assessment
part of becoming a participant in the NDIS to Centrelink. Anyone with a disability is going to have a history
of dealing with Centrelink and therefore they are ideally suited to managing the assessment part of people
wanting to join the NDIS. Centrelink has been assessing people for the Disability Support Pension and
whatever else it was called before that for decades and have the community trust for the work they do.
Thanking you for giving us this opportunity to give feedback regarding the National Disability Insurance
Scheme (Becoming a Participant).