Dear Sir,
Cerebral palsy has followed me and my family our whole lives and it is in personal capacity that my submission comes. I note from the Consultation Report an exposition of State and Territory legal positions, as well as numerous recommendations from the Disability Royal Commission. Having been through that long-winded and expensive process, why is there even any question about implementing the recommendations? Equally, if there are stand-alone positive duties in other comparable acts, where is the controversy in drafting equivalent provisions for the Disability Discrimination Act (DDA)? I do not see any issues, then again, there seems equally few problems in drawing from Occupational Health and Safety Laws to rebalance the comparator test. Where I would put all the onus on employers to prove non-discrimination is in the public sector and in the NGO sector, where public funding or a dispensation (such as charitable status) is provided.
These organizations, particularly disability specialist ones, are the hardest to deal with, regardless of what they allegedly clam to do. In the NDIS world these bodies have gone from charity to profit-making businesses, while ideas of benevolence and the client’s best interests have been forgotten, or at least subsumed by the profit motive. These service providers know that choices for the disabled and our families are difficult. Beyond our current service setup, changing anything is complex and creates difficulty in access, perhaps through distance, expense, and the necessity to coordinate third-party care staff. It is one thing to have a choice or be part of a market at law; it is another thing for this to mean anything in practice. If the DDA is going to do anything meaningful, it needs to look at the almost vasal and serf relationship between those with disabilities, our families, and our NGO overlords. When telling the Royal Commission that I felt that the outsourcing of public services and establishment of the NDIS has created a Bunyip Aristocracy of Charitable Lords, I meant it. This is still very much the case today, as providers either leave the sector or are taken over by others. Oligopoly or monopoly makes service providers even more powerful and also more undesirable, as I told the ACCC at .
The DDA should also be amended to withdraw any exemptions for charities. For reasons, including those outlined here I have long felt that charity has changed and not for the better. It is a business and, gives no real advantage to those with disability. Getting anything done by some charities/NGOs requires warfare by email, constant paperwork, appeals and complaints. The last thing I feel is safe, yet the NDIS, its NGO providers, and its Safeguarding and Quality Commission (a name with a solely ironic quality) is the only option available to me, given my level of impairment and thus dependence on NGOs and their often-dubious staff. This is allegedly generational policy change upholding human rights and non-discriminatory principles. Really? The disability sector, particularly its modern corporate form, increasingly frighten me and are increasing remote from my aspirations: see These are themes referred to repeatedly in the attached documents. However, despite everything we know about the NGO sector and the way it has treated so many people, it continues to hold a legitimate place in public policy and society. Why? My submission to the Productivity
Commission’s Care Economy inquiry and its three Appendices clearly outline the failures of the NDIS and the NDIS Commission. Abandoning State-based service delivery to move to tax exempt NGOs and private businesses profiteering on the back of vulnerable people, has been to the benefit of many morally bankrupt, abusive narcissists.
The DDA and NDIS Commission has been slow and ill-equipped to deal with any of this. When you are waiting so many months to hear about a complaint that you forget about it, are no longer using the service, or the problematic people have moved on, what is the point of the Commission or DDA? It annoys me that my attached Senate submission predicted some of these Leviathan-type bureaucratic problems, yet politicians more concerned about symbolism than substance legislated the NDIS anyway. The Commission (regarding the NDIS) was the band-aid put on the neglect and abuse problem, to stop the media (or anyone else) asking too many difficult questions – like how, after a conga-line of Royal Commissions into Child Protection, Aged Care and Disability Care, can we continue to fund NGOs? Aren’t they completely discredited by now? Furthermore, it is time to spend at least a few of the billions of dollars we are wasting on the NDIS, its Commission and NGOs, on the medical research which could cure and prevent disability. This is something pressed repeatedly with the Productivity Commission and at research conferences, such as that attached and presented at a healthcare consumer conference. The same could be asked of the DDA and the Human Rights Commission; just what dividend is being returned to the community and is the return worth it? There were only two cases I ever bothered taking to a hearing; the first was settled just before the hearing and the second I lost. Both took two years to complete, which makes me think that much about the disability sector is determined by the litigation of attrition and exhaustion.
It is time to accelerate science, just as governments around did worldwide to protect millions from dying through exposure to Covid-19. We also moved public policy, perceptions, and behaviours to address the scourges of AIDS, cancer, and the like. Funding for research was a key priority and with it, new treatments and longevity came. Why don’t we think this way about all disabilities and diseases? The answer seems to be that there are too many NGOs benefiting from the financial returns coming out of keeping people sick and in need of support. The NDIS actively bars people from accessing, or seeking funding for, cutting edge research, thanks to its Rule 7.5 (discussed in both my paper to the consumer conference and its slide show). No DDA, Safety and Quality Commission, nor the NDIS itself can compensate people for disability. All the preceding Royal Commissions, reviews and media reports give a growing catalogue of injuries and deaths attributable to the failures of oversight by the Commission and the NDIS Agency, as well as the negligence of NGO providers which should condemn all three parties. Instead, the NDIS has institutionalized NGO/charitable provision of goods and services, perceptualizing abuse, neglect, through lifelong impairment. Meanwhile, the DDA would ask me (and the rest of the Australian community) to accept and include disability as a ‘normal’ part of life. It should be setting a pathway and timeline to the prevention and cure of all disability.
Additionally, the Commonwealth Government and the States and Territories must come to terms with the fact that most NGOs are not fit for the tasks governments have set them. As a result, the cycle of budget blowouts, crisis, scandal, and review will continue. It is time for all
governments to take back formal responsibility for service delivery. It is also time to hold to account those who decided that lifelong impairment/disability was ‘enough’. It may be too late for me, at 52, to expect anything different. However, those younger should hold a realistic expectation of cure and the DDA should facilitate that outcome as a principal aim. Again, it is not as if we lack the scientists to undertake the work (see for example: https://www.stemcellnetwork.org.au/) and you would think that rational and humane policy sought a disability free community. Yet, as explained below, the NDIS actively prohibits funding functional improvements or access to cutting edge therapies. This must change, to realise a disability-free future. It is not as if we lack the scientific researchers to do the work, but more funding is needed, an argument made in nearly all attached and linked documents.
Finally, I welcome the work being done by energy providers and others to ensure greater reliability for those requiring home-based life-support. The work of the Energy Charter also goes to the importance of planning for power outages and planning not just to survive but survive well during outages. This means know what to do who to call, and the back-up batteries, solar cells or other equipment being in place. Therefore, no-one should dismiss the hard reality of the medical model of disability. As I age, it is a growing reality for me, marked by the noticeable growth in my prescriptions and hospitalizations. If you rely solely on the so-called social model, that is delusional, and people will die unnecessarily. Due to this, find attached my submission to my local shire council’s review of its Disability Action Plan, where I highlight the vital work of the Energy Charter to save lives, increase awareness and ensure more people with critical health needs have the tools to better cope with power outages. These are practical actions now as we await cure and prevention. Cure and prevention of impairment/disability should be the highest aims of both disability and human rights principles, laws, and conventions. When will the DDA catch-up?
Yours truly,