Submission 2682
Submission on the NDIS Amendment Bill
To whom it may concern,
My name is and I am a NDIS participant. I suffer from OCD, Major Depressive Disorder, Complex PTSD and chronic pain.
I oppose this bill due to these areas of concern: ●Definition of what qualifies as a permanent disability ●Minister given powers to cut funding to entire categories ●New Functional Capacity Assessment criteria ●Limits on when a participant can ask for a plan reassessment
One of my main concerns about this bill is that it changes the definition of what is considered a permanent disability. The NDIA considers a disability permanent if the person will need support for life and there are no appropriate treatments available that would remedy the disability.
The new definition will expand to include treatments that improve symptoms or reduce negative impacts of the disability. It doesn’t take into consideration whether those treatments are too expensive for the person to access, whether they are located too far away or whether the treatments are invasive, risky or produce harmful/unwanted side effects.
It also does not take into consideration that just because a person is receiving treatment that helps reduce their symptoms- that they do not need support in accessing that treatment. Many people rely on their NDIS funding in order to overcome the barriers to accessing particular treatments. I also wonder what will be considered a reduction in symptoms. Will there be thorough, individual assessments or will people be suddenly cut from the NDIS without warning?
In my case I have tried a lot of different treatment options for my OCD. I am not sure if a past treatment may be reassessed as an appropriate treatment in remedying my disability.
Submission 2682
OCD is a very complex and debilitating disorder. The World Health Organisation ranks OCD in the top 10 of the most debilitating conditions, and yet it is still so stigmatised and stereotyped as a quirky personality trait.
One of the treatments I have tried is the Melbourne Clinic In-Patient OCD Program. This is a very intense program with 3 weeks in-patient stay engaging in Exposure and Response Prevention therapy. One time is not enough to do the program and expect to be sufficiently treated from OCD. I have had lots of my compulsions return after I thought I was rid of them.
During my second attempt at the program I started to experience some distressing side effects as a result of the intense psychological strain I was putting myself through. On multiple occasions I began to experience trouble with physical coordination in my body. I tried folding a piece of paper and my hands started folding it in the opposite direction to what I was telling them. I picked up a fork and struggled to bring it to my mouth instead of further away. There were a few other incidents like this that made it apparent the intensity of the program was too overwhelming for my body to handle.
The hospital’s GP was not very helpful, but he suggested the symptoms would probably go away and fortunately they did once I ended the program. It was a very distressing experience for me, but I’m not sure if this would still be considered a reasonable treatment option that would make me unfit to receive NDIS funding.
Even if I did return to the program I would need to attend many times and there is still no guarantee it would “fix” me. A friend of mine has done the program over 10 times and she still has debilitating OCD.
After my second attempt at the OCD program I continued therapy with a psychologist who specialised in OCD. Sessions were going well, but I hit a road bump when my PTSD began to flare up alongside these difficult sessions. I decided to seek out a new therapist who specialised in trauma.
This is where I find myself today- managing my Complex PTSD in therapy sessions, alongside self-guided ERP for my OCD.
Submission 2682
This bill does not take into consideration that treating multiple conditions is a juggling act that requires taking into account all the comorbidities and how they affect one another.
I have also tried many different medications. It has been very difficult to find the right combination of medications to manage my major depression, my anxiety and my chronic pain without the corresponding medication interacting badly. It really is a complex balancing act.
OCD is a very complex condition. I have prior rituals and intrusive thoughts that I have recovered from that will flare up again when I am stressed.
I have been able to make great accomplishments in managing and overcoming aspects of my OCD, but the major parts that impact my daily life cannot be easily cured.
When I am receiving the right support I can manage my symptoms to a level where I can work, eat properly, engage with the community, even drive a car- but when my supports are taken away or reduced my OCD symptoms get worse again. I have noticed this recently since my supports have been considerably reduced. I am managing my OCD symptoms to my best ability but I still need help in order to function.
There are other parts of this Bill that deeply concern me. Unfortunately, I have run out of time to properly argue these concerns in detail, but I will try to quickly summarise.
Another area of this Bill that concerns me is the Minister being given the power to cut funding for entire categories for participants without the ability to appeal. Every participant’s situation is different and changes should not be made without looking further into a person’s reasons for needing that funding. Each category is necessary and reasonable in supporting a disabled person live their lives comfortably.
Huge decisions like this should not fall on an individual’s shoulders without having input and the advisement of other parliamentary members.
Submission 2682
Another concern I have for this Bill is the plan in reducing funding for social, civic and community participation which will keep disabled people on the outskirts of society. Imagine if you could not go out of the house to engage in small pleasurable activities that make living worthwhile?
I recently had such an experience where my funding was considerably cut without warning or understanding. For the last 3 months I have been putting together documents in order to fight this decision. Cuts like this will continue as a result of this bill without the ability for people to appeal this.
I have fought for my NDIS plan a number of times, and each time has been just as stressful, time consuming and soul-crushing as the last. However, I am glad to have been given the opportunity to ask for reviews/reassessments into these decisions. Everyone deserves to at least be given the opportunity to fight for their rights.
The participants of the NDIS are not burdens on society who should be used as an easy scapegoat to offset the government’s financial grievances.
Anyone can become disabled at any time in their life. More time and effort needs to be taken in changing such an important Bill. More input from the people it affects and other options need to be taken into consideration. People’s rights, agency, wellbeing and their very lives are on the line. If amendments need to be made, I ask that the committee please consider the lived experiences of participants on the NDIS.