Submission

I am writing this submission out of a deep concern for where this country is heading. I was born with a serious heart defect, that has a 100% mortality rate without medical intervention. To date I have had numerous surgeries and procedures including two open heart surgeries, The first being the day after birth. I have been on the DSP since 2013. This disability means that I will likely die young. However, that is not my main concern. The older I get, the more my heart defect impacts me.

At present I am enjoying relatively good heart health, but not long ago I was struggling with atrial fibrillation and tachycardia. These and other heart problems could hit again at any time, rendering me severely disabled. In such times even a walk around the supermarket is next-to impossible. Keeping my house clean is out of the question. On top of this I am also a semi- diagnosed autistic. I say “semi-diagnosed” because the diagnostic process is expensive for adults, and I am not sure it is worth the money I’ll have to pay. For the record, my psychiatrist is certain that I am autistic. He has said as much. At present I am getting counselling from neurodivergence-affirming organisations whose counsellors are all neurodivergent themselves or have a keen interest and understanding. I am finding this counselling incredibly life-affirming, and I am beginning to understand myself and my limitations better.

However, society as a whole is not understanding of ADHD or autism in adults, or in fact ANY hidden disabilities. Even in the medical world autism as it appears in women and girls is only now beginning to be studied. I spent 47 years undiagnosed and not understanding myself. Adults with ASD and ADHD are infantilised, and our disability written off as a “fad” or “not a real TM” disability. As I just said, hidden disabilities in general are not understood by society. I have no reason to believe that able-bodied politicians have any more insight than the average bloke at the pub. Yet you are making decisions that impact OUR health and wellbeing. WE need to be consulted, and at present that is not happening in any substantial form, not for people with disabilities, not unemployed people, not Indigenous people. This is why I am concerned about the present NDIS bill being considered. This is why I have not yet applied for the NDIS, although I am in need of help. Friends and family have been encouraging me to apply for the NDIS for a couple of years now, but I am hesitant. I am hesitant because regardless of whether the ALP or LNP are in government, Australia has been regressing for years now, and as a disabled person I feel very unsafe.

I spent my youth studying and working in Tokyo, Japan. I was self-reliant and managed despite periodical heart issues. I returned to Australia in 2009 after suffering consistently bad health and knowing that I wouldn’t be able to afford the ongoing health care in the Japanese medical system that I would need. Unfortunately, since returning home in 2009, I have watched my country, Australia, regress on human rights and civil liberties. I have seen both “sides” of politics in lock-step demonising refugees and migrants, speak and acting in ways that support far right narratives…I have watched our right to protest be curbed and even criminalised. I have seen the country I know, with a Medicare system to be proud of, slowly

• fall apart. I cannot afford private health care, but without it, a person can slowly die before getting surgery. I have been waiting 2 years to see a liver specialist.

• My father recently had surgery to remove polyps from his nose. They were centimetres big and beginning to suffocate him. Thankfully his sister was willing and able to pay the $20,000 needed to get him surgery in the private system. Without her help, he would have had to wait years in the public system or possibly died from choking prior (He had a couple of near misses when swallowing tablets not long before his surgery.) This is not the proud Medicare that we once had. Moreover, we now have a track record of both ALP and LNP being cruel to the most vulnerable. Do I need remind you of Robodebt? My own sister and friends were impacted. thankfully they were enjoying good mental health at the time, else they might also have suicided, as some did.

• Let me remind you of our Centrelink system, which now puts private organisations in charge, dictating how unemployed people live. And they profit off it! I have had first-hand experience of their callousness and abuse of the system. Yes, some are well-meaning, but there are others who are in it to make money off the system, and it appears, will do anything however unethical to make money off vulnerable people. At a time where my mental health was suffering, and my physical health meant that I could only work limited ours, my job search officer put me forward for a full-time job in incoming complaints without my consent. This totally contravened the parameters of my work capabilities as set out by centrelink. She don’t care: if she put me forward for a job interview, her organisation got a monetary kickback.

• The job search support system we presently have is paternalistic and predatory. It takes away the independence and right to self-determination of the people in it. Remember the Basics Card, and the Indue Card? Government preferred to listen to a mining magnate’s ideas on how to deal with the unemployed and Indigenous people, rather than speak to US. Shame! I am disgusted by what Australia has become. This Labor government has proven itself to be much the same as the LNP when it comes to human rights. There is no reason to believe that the present bill on the NDIS will result in anything better than what our welfare system has become, i.e. one where predatory organisations make money off of the most vulnerable people in society. For years now, both Labour and the Liberals have introduced, or tried introducing policies that are punitive in nature. I am sick and tired of the orchestrated cruelty. do ALP and LNP wear pith helmets to your meetings because the paternalistic, racist and ableist ideology behind your actions and words seem from a past century, and that is where they should have stayed!

• I reiterate, we, the people being impacted by government decisions need to be consulted. What we don’t need or want is some third-party person or organisation making decisions and dictating to us how we utilise our funding. We have lived experience of our disabilities. WE

• know best what our challenges are.
• WE need to retain the autonomy to make decisions that impacts our health, wellbeing and life as a whole.
• It appears that this present NDIS bill will take away the autonomy that NDIS participants already have.
• Australia, the Cruel and Paternalistic Country.
• That is what we are morphing into.
• It is time to change tact.
• It is time to build a new system.
• As a nation we need to stop perpetrating racism and paternalism.
• Any amendments to the NDIS that take autonomy away from disabled people themselves needs to be abandoned.