Anonymous – 01/10/2021
I wish to make a submission addressing concerns with the Changes to the Becoming a Participant Rule, (Sections 7-14 of Part 2 of the Act). I question the veracity of splitting psychosocial disabilities from the general definition for disability in Sections 7, 9 and 11. I am happy for my submission to be published.
Firstly, I have concerns in the definition of what a psycho-social disability is. This is not stated.
A number of disabilities, such as Autism Spectrum Disorders and Bipolar Affective Disorder, are not merely psychosocial in nature. There is a significant amount of neurobiological and physiological disability often associated with these conditions. In the case of ASD, this includes muscle development that effects mobility and the ability to safely complete physical tasks such as managing a stove or a knife. Further, there are issues in episodic disabilities, such as Bipolar Affective Disorder, where regulation of neurochemicals is a biological issue.
This wording does not reflect the biological aspects of sensory sensitivities and trauma caused by social stigma and abuse, however, both these conditions are often physiological in nature. Further, the prevalence of co-morbid disabling mental health conditions, including anxiety, depression and trauma, are not addressed here either. In many cases, complex psychosocial conditions cause a decline in the brain that results in ongoing neurological conditions that can, in people without psychosocial conditions, appear to be medical, e.g. anxiety, depression and trauma responses. Arguably, this decline is not a medical condition in the case of psychosocial comorbidities, rather it is a transition in the brain and cannot be overcome purely by medical treatment, much like an amputated leg can’t be simply regrown.
While medication and/or treatment can be supportive, regularly this does not result in the disabled person being free of disability. There may be an improvement, but that improvement does not result in the person with disability being able to live and participate in society without supports. This definition does not give adequate insight into the nature of these attributes of psychosocial disabilities.
Secondly, psychosocial disabilities are often integrative of the person’s identity. This is particularly the case for people with Autistic Spectrum Disorders, but also those with Bipolar Affective Disorder and schizophrenia. While being profoundly disabling in many cases, these sorts of psychosocial disabilities form a deeply ingrained part of the affected person’s cognitive and emotional attributes of their identity, including creativity and inventiveness. In many senses, treatment cannot be considered a cure, because the person cannot be separated from attributes of their condition. This is what is meant by neurodiversity. Further, there is significant historical and sociological evidence pointing to the necessity of people with these disabilities as a part of human development and ongoing environmental adaptability of the species.
The way that Section 8 (2) is written indicates the potential motivation to frame psychosocial disorders and neurodiverse conditions as part of an outdated medical model rather than a social model. The current social model of disability proffers that ongoing supports would be required to assist in the integration of neurodiverse people into a social context which is not designed for them. In general, society is not equipped for these differences, particularly those caused by sensory and neurological differences because the population who have such differences is by necessity small compared to the entire human population—much less than 10%.
In relation to 8(2)(a), I am concerned that people will be refused choice of treatment and the right to assess whether medical intervention is in their best long-term interest. Personally, in the last few years, I have lost my brother-in-law (45 yo), brother (50 yo) and sister (48 yo) to ailments caused by mental health medication. They all had different psychosocial conditions. Also, my surviving sister has had to have her medication changed significantly because of damage to her liver and kidneys by the standard medical approach for treatment of her psychosocial disability. The engagement of the NDIS for other people with the same disabilities can result in a reduction in medication, leading to a longer life expectancy. To see this as an improvement worthy of withdrawing support is completely at odds with the social model of disability support. Also, it isn’t very humane, and at odds with Australia as a developed social democracy. Further, it could be argued that it is at odds with the UN Convention on the Rights of Persons with Disabilities (CRPD), of which we are a signatory.
Further, in looking at 8 (2) (ii), I am concerned that it could be read that any substantial improvement, even one that does not result in the capacity of the person with disability to participate freely and independently in society and/or at home without support, could be seen as a reason to deny access to the NDIS. This is a concern because the result of good therapeutic treatment and medication is to improve the functionality of the individual to the best of their capacity given the disability. If this does not occur, then we have a claim for participation, as stated in 2 (b). Obviously, the intent of the wording of the amendment cannot mean that if a psychosocial condition is treated and treatment leads to better functionality, a person is not eligible for that support because there was an improvement, even where they still require ongoing support?
Finally, I am concerned that the benefits of ongoing NDIS support could be seen as a reason to withdraw a participant from the NDIS. For that reason, there should be a caveat that a person who is granted NDIS funding cannot be removed from the programme because their supports have made them more able to manage day-to-day life. I have noticed this with people I have supported. The supports mean they can engage better with society, even at a level that might be seen as typical functionality. However, when these supports are withdrawn, the NDIS participant soon regresses to a much lower level of functionality. It cannot be that the purpose of the NDIS is to make it so that people with disability continue to be limited and seem obviously disabled even with the supports granted to them. The aim of disability supports as part of the social model is to give participants equality of social participation and personal independence.
The purpose of the NDIS legislation is to make it possible for people with disabilities to take part in society, enabling them to contribute to our national capacity through their interaction. Ongoing supports that enable people with disability to access their gifts and talents, as seen in many people with psychosocial disabilities, is in our national best interest. Limiting access to appropriate supports for neurodiverse people undermines their potential to contribute to our national development, and undermines the capacity of the NDIA to act as an insurance agency. The great risk is that by limiting supports, we are creating a greater cost to our community over time as the degenerative attributes of many of these disabilities are exacerbated through poor social and personal support leading to poverty, injury and illness for those with psychosocial disability and increased burden for their families and communities.