Submission to the Joint Standing Committee on the National Disability Insurance Scheme

Regarding Independent Assessments

Over the last few years, and especially over the last few months, we have heard in Royal Commissions, Inquiries, and public disclosures the testimony of people who have been hurt within social structures and institutions that should have protected them. The key learning from the royal commissions, investigations, reports, and disclosures made by victims of abuse and assault, is that the situations in which these abuses occur are those in which there is a vast difference in power, in status or in authority. Situations in which a person inclined to inflict abuse has the opportunity, where there is very little or no accountability, and where that person has a disproportionate amount of power over the wellbeing of the other are situations that allow abuse to occur. These are the preconditions for abuse. People with disabilities are twice as likely to have already suffered abuse, violence, neglect, and sexual assault. We have so often already been in situations where we were powerless, and had so very little recourse to access help. That is why these changes are scaring so many of us.

I have a physical disability, but I also have a diagnosis of complex post traumatic stress disorder. The new structure involving Independent Assessments is causing retraumatisation for NDIS participants with histories of trauma. For those of us with complex or rare conditions, we have often experienced a great deal of medical trauma. For my condition, it takes an average of 11 years to get a diagnosis. I began experiencing disabling symptoms at age 14, but was not diagnosed until I was 39. I’m now 43. I’ve had a lifetime of horrific medical experiences including being misdiagnosed and treated for conditions I never had, and having my symptoms continually invalidated. When my daughter was only 3 years old, a GP misdiagnosed my ongoing pain and fatigue as being due to a kidney infection, despite a lack of any evidence, and prescribed three courses of an antibiotic that people with my condition should never be given. For people with my condition, it has a high risk of causing tendon rupture, aortic dissection, and nerve damage. I ended up with a permanent injury - nerve damage that left me with agonising burning pain in my hands and feet. I was unable to access treatment for that pain for 12 months. I only made it through that 12 months because I had a 3 year old waiting for me to be able to play with her again. I lost a year of my life, and much more. I have since been diagnosed with complex PTSD, resulting from childhood abuse, sexual assault, and medical trauma.

Being forced to repeatedly defend my need for treatment, having to justify each and every support even when I have already done so, even when I have assessments by experts in my condition with clear recommendations, is dehumanising and humiliating. That is the price I knew I would be paying for gaining access to NDIS funding. The system being proposed now however, is such a stressful prospect that it is calling triggering of PTSD symptoms for myself and for many other participants I have spoken to. This proposal requires us to allow a stranger into our home who we have not had the ability to vet as a safe person, who we cannot choose to stop interacting with if they treat us with disrespect, who will not be qualified to understand our particular combination of disabilities, and who will ask us personal and

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intimate questions. You are asking us to demonstrate or explain complex, intersecting disabilities, when many of those disabilities impact our ability to communicate. Many disabilities are also variable, and we cannot necessarily perform each deficit like a dancing monkey. Having to defend our need for assistance or prove that our symptoms are real is retraumatising and inhumane. Advocating for ourselves in such situations impacts our ability to communicate. For instance, I am only able to communicate this after having weeks to process difficult and painful thoughts into a coherent piece of writing. I would not have been able to do it verbally or in response to intrusive questions.

Disabled people who are applying for NDIS, or who are already participants, are faced with a choice between participating in an assessment that trespasses our personal boundaries in multiple damaging ways, or losing access to the supports that allow us to live independently and make our quality of life acceptable. Without access to NDS, the cost of supporting and managing serious disabilities results in relatives having to give up work to become carers, families living in poverty, people with disabilities becoming homeless. NDIS has given many of us access to human rights most able bodied people take for granted. This is not a choice we should be having to make. It is not a choice that is being made freely and without coercion. It is therefore not consensual, and being forced to participate in nonconsensual healthcare experiences is fundamentally damaging and traumatic.

The process you are planning is retraumatising because it shares so many features with the circumstances that surround experiences of abuse. It is nonconsensual. It is invasive. Our future wellbeing is in the hands of a single person, yet there is no independent, accountable, transparent system by which we can make a complaint or ask for help. There is no method to hold assessors accountable for consistently behaving respectfully, it is just assumed that they will. Unfortunately, people with disabilities already know that not everyone behaves respectfully, and that behaviour ranges from respectful and honest, to disrespectful and ignorant, to dishonest and abusive. There are people who take advantage of vulnerable people. They tend to be attracted to jobs where they will be working with vulnerable people. One of the ways I maintain safety is by exercising choice, by making sure that any new therapist or specialist has been personally recommended by someone I trust, and by using feedback systems that maintain accountability and professional standards. The system you are proposing does not offer any of those safeguards.

How many royal commissions do we have to have before Australian governments realise that it is the structural protection of power and status at the expense of disempowered and vulnerable groups of people that is causing the problem? It is almost unthinkable that during a Royal Commission into Violence, Neglect and Abuse of People with a Disability, a government would restructure a key support for disabled people, building into it a protocol that compels a vulnerable group of people to participate in a non-consensual assessment experience, one that an overwhelming majority of us have expressly stated we do not want, that it will cause us harm, that it will not be accurate, and that does not feel safe. Not only that, but so far the plan seems to be that the mechanism for correcting inaccurate decisions regarding our plans, the internal review, is to be removed. Instead of at least having recourse to follow up on inappropriate decisions or behaviour during assessments, what we will face instead is the compulsion to submit to another Independent Assessment.

Australia has a long history of sexual abuse of people in institutional and medical care.

We have had a Royal Commission into abuse of people in institutional settings, and it is widely acknowledged that people with a disability are more likely than the general population to suffer abuse and assault. We currently have a Royal Commission into this very issue. We are being asked to come forward and talk about those experiences so that changes can be made to prevent it continuing to happen. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability Interim Report states that almost 75% of people with a disability have experienced violence in their lifetime, and people with disabilities are twice as likely as the general population to experience violence in any one year. 32% of women with a disability experience sexual violence (https://disability.royalcommission.gov.au/system/files/2020-10/Interim%20Report.pdf p8). The commission acknowledges that these statistics don’t include children, people in custody, people living in institutional settings and people who don’t speak English so, those statistics, while already shocking, are a significant underrepresentation.

The impact of the changes being made are serious and damaging to the wellbeing of participants, not just in that they run contrary to our human rights, but because they expose people with disabilities to very real harms.

Following are my concerns regarding the changes to NDIS being proposed.

• The claim that Independent Assessments are the only way to remedy the problem of inequity of access and funding allocation is untrue. Making functional assessments a Medicare rebatable item for people with a chronic disease GP management plan who intend to apply for NDIS would solve this problem in a more cost effective and humane manner.
• Despite assertions that Independent Assessors will be qualified allied health professionals, their ability to make an accurate account of a person’s level of disability will be vastly inferior to that of the medical specialists who diagnose and treat our disabling medical conditions and the occupational therapists who perform functional assessments. Independent Assessments will be inaccurate representations of the level of a person’s disability because the assessors are not specialists in the disabilities we live with.
• It is unreasonable to expect applicants/participants to be able to adequately explain our functional impairments. Disabilities involving communication are an obvious barrier to this, and the proposed plan of finding a family member or carer to advocate on our behalf is inherently flawed and carries risk of misrepresentation and misunderstanding, enabling financial and other forms of abuse, as well as opening up the process to corruption.
• Independent assessments put us in the position of having to prove and demonstrate the disabilities that are already diagnosed and documented, and depend on the assessor to record our communication accurately and without bias.
• It can take years to establish relationships of trust with our treating specialists, and it takes time to develop an understanding of how to communicate respectfully with individuals whose disability impacts their ability to communicate. This cannot be achieved within 3 - 4 hours.

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6. NDIS serves the most vulnerable group in Australia. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: Interim Report states that two thirds of people with disability experience physical or sexual violence in their lifetime, and that “disabled women are twice as likely to have experienced sexual violence in the past 12 months as women without a disability” (p60) The Royal Commission notes that traumatic events “typically involve the loss of control, betrayal, abuse of power, helplessness, confusion and/or loss” (p129). People with disabilities who have previous experiences of trauma are very likely to be retraumatised by being made to participate in the Independent Assessment process, being compelled to answer intimate questions asked by a total stranger who doesn’t understand the complexities of our disability or our particular history which may include traumatic experiences. It is inappropriate to expect us to discuss personal and intimate issues with a total stranger.

7. The changes being proposed set up power dynamics of the sort that enable abuses of power and will lead to vulnerable participants being subjects to . We are currently part way through the Royal Commission into Violence, Abuse and Neglect of People with Disabilities and yet the changes being made to the NDIS create exactly the conditions by which abuse thrives - conditions involving an asymmetric power structure and lack of safeguards such as an independent complaints process.

8. There is no independent, transparent complaints process by which to hold assessors accountable. In fact it seems that the planned response to a complaint about an assessor, or a request for review of a decision made as a result of an Independent Assessment is to make the participant subject to a further Independent Assessment. If the first assessment is traumatic, this constitutes a disincentive to report abusive or disrespectful behaviour. There does not even seem to be any guarantee that the second assessment wouldn’t be with the very same assessor.

9. The quality of life, health and wellbeing of people with disabilities in Australia will suffer as a result of inadequate supports due to inaccurate assessments. This will reduce the positive impact that was part of the impetus behind construction of the scheme in the first place - the social and economic capital that is freed up when people who face barriers to participation receive support to overcome those barriers. Many participants will experience further degeneration of their functional capacity due to inadequate supports and therapies, which feeds back into the cost to both the public health system, and the cost burden to the NDIS.

10. The changes being proposed will not solve the problem of the NDIS being inefficient. This problem is caused by outsourcing the management and implementation of the scheme to private companies whose only priority is profit, and who hire unskilled workers so they can pay them as little as possible. These private companies are openly known to pocket around half of the NDIS prescribed fee for supports. Hiring unskilled workers results in low accuracy of participant plans, necessitating a deluge of applications for plan reviews. This is a further cost that wouldn’t be necessary if the people managing and implementing the NDIS were qualified allied health workers.

11. Inefficiencies in decision making result from the difficulty that NDIS employees have in making the complex conceptual leaps necessary to follow the connection between a person’s medical conditions, to the symptoms they experience, to the areas of functional impairment those symptoms cause, to the disabling impact on their ability to participate in society. Much of the supporting documentation for applications is written in language referring to the first two steps in that chain.

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The NDIS makes decisions exclusively based on the final two steps in the chain. Currently, functional assessments written by occupational therapists are the missing link that translates between medical terminology and NDIS terminology. Three days of training cannot equip NDIS workers to make those translations themselves which means people who cannot afford a functional assessment are more frequently denied access, and end up with less comprehensive plans.

12. Making functional assessments a Medicare item when referred by a GP for a person applying for NDIS would resolve the problem of inequality of access and plan budgets. But getting rid of functional assessments and instead putting disabled people into a situation where we are having to do that translation ourselves, verbally, to a stranger, with no supporting documentation from our specialists, in a situation where we may not feel safe and are having to communicate with someone who has a limited understanding of our particular conditions, that will not resolve the problem. The changes being proposed do not address the problems being used to justify them, they make those problems far worse and put us at an unacceptable risk of harm.

I am aware that a lot of work has gone into designing and justifying these changes. Please do not let that momentum prevent you from hearing our genuine and serious concerns, and from doing what is necessary to prevent the NDIS from being a source of harm.

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