Submission 1780
My name is and I am an autistic mother and carer to my three autistic children. I have been an advocate for my children since well before they were each identified and diagnosed as autistic.
My children, from differing points of time, are participants in the NDIS system starting from 2021. They are able to access psychological support and occupational therapy.
The support that we have accessed through the NDIS has enabled us to find (though still limited) appropriate support necessary for each of my very individual autistic children. Even within the same family, needs are very individual and as is specific to autistic and disabled people, needs and capacity often fluctuate. This does not mean that autism is ‘cured’ or ‘not permanent’. I and my children will be autistic for life, we are disabled and will have needs that must be supported through our own choice and autonomy, for life.
The NDIS was created around individual need. Disabled people are entitled to autonomy, choice and control regarding the necessary and reasonable support they require in their lives.
For each of my children, being an NDIS participant has meant that we have been able to access support specific to their needs. Their needs could not be supported through generalised, mainstream services. These, in our experience, have been un-informed, harmful and ignorant about neurodivergence and autism, expensive and inaccessible. The government’s plan to remove hundreds of thousands of autistic people from NDIS with no appropriate, available, or accessible alternative to support is incredibly scary.
I am terrified about my children being taken off the NDIS or having their plans and funding budgets reduced, which would mean their access to support is lost.
NDIS represents an anchor in our life. My children cannot access generalised supports. The support we access must be specific and informed, have knowledge and experience that is autism-specific, PDA-informed (pathological demand avoidance) and trauma informed (due to the trauma all three of my children have experienced in navigating, in particular, the education system as their disability needs were unsupported). Autism is permanent.
We, as a family, already live very minimally supported and isolated lives due to disability and the inaccessibility of the world. The NDIS in its current form, allows our children to access some support – this is incredibly necessary. If this support was to be taken away due to the cuts in the legislation, we would be further isolated and completely unsupported. I, and my partner, are carers for our disabled children. Our care goes well beyond the standard expectations and
Submission 1780
demands of parental responsibility. All three of our children have suffered trauma and challenges with the education system due to their disabilities and their needs being unable to be supported by their schools. Due to this, two of our children are now home educated. We are evidence of the education system failing our children due to their disability. Disability is not a burden. Support is a right. Support stops families like mine not descend into crisis.
We are desperate not to have to live with the failure of another system -NDIS- meant to support our disabled children.
The changes proposed in this NDIS legislation are dramatic, deeply concerning and frankly, terrifying for disabled people and their families.
Tightening access to the scheme, shifting responsibility to other systems, including families and carers, and removing choice and control will directly detrimentally impact disabled people and their families. These changes will directly increase distress and pressure on families like mine. These legislative changes will lead families and disabled people into crisis and harm.
The transfer of this responsibility, labour, cost and risk from the NDIS is a heavily gendered legislative choice. The vast majority of carers are women, the nature of care work – both paid and unpaid – is strongly gendered. This legislation will further strengthen gender inequity and systemic bias against women.
Without funded and individualised support, women and disabled people lose safety, autonomy, choice and control. We lose the right to self-determine and shape our lives.
As a disabled woman with disabled children, I live an isolated and largely invisible life. Taking away necessary supports for my children, will directly push my family into further burnout and crisis. I say this not for dramatic impact, but the reality of our day to day life. My children having appropriate support, supports not only their needs but validates and support mine, as a parent and carer. It provides some kind of lifeline that we are not alone, that we are witnessed and seen as a family, in our struggles and in our survival.
I am deeply concerned regarding legislation changes to functional capacity assessments and automated systems. Standardised assessment tools are shown to fail to recognise and respond to disabled women and girls, especially those with complex, dynamic or masked disability presentations. All three of my children – and myself – mask heavily out in the world as a survival response.
Submission 1780
Often our challenges and our struggles are only evident in the privacy at home amongst safe people and spaces. Strangers and systems do not have the insight and nuance to identify our challenges and struggles. This is why it is so important to have advocacy and self-advocacy to have this identified and understood. The system must respond to individual circumstances. Additionally, there must be human review on decision-making processes.
For one of our children’s plans we were given grossly inadequate funding, we sought a review, the system decision was upheld, and we then took our review to the Administrative Appeals Tribunal (now the Administrative Review Tribunal). Though this process was long and traumatic, involving us against NDIA’s very expensive lawyers, we resolved the process with more appropriate funding for my child’s support needs. Decision appeal processes are vital. They must be embedded into the legislation. Participant safety depends on this.
I am deeply concerned that these proposed legislative changes will cause distress, harm, injury and trauma to our disabled people through the cutting of support and minimisation of disabled people’s needs. These legislative changes, if allowed to be passed, will make disabled people and their families even more invisible and unheard. I am incredibly worried about the health and well-being of people should this legislation be passed. Our survival, inclusion and participation in society should not be conditional. Since first engaging with the NDIS system I have continually had to prove and justify my children’s support needs, but this legislation takes proof to a scary and limited level. Many disabled people including children will be left without support. Many families and parents and carers will be left to again pick up the pieces resulting from broken and unsupportive, inadequate systems. When needs are dismissed, the care is shifted, the need does not disappear. We as carers and disabled people are already burnt out and depleted. The impact of bureaucracy on disabled families is exhausting, harmful and debilitating, and this legislation will make it exponentially worse. And when NDIS support is withdrawn, need is to moved to carers and families.
I oppose this legislation and it should be blocked. The legislation illustrates disregard, minimisation of and ignorance of disabled peoples’ needs and rights to safely exist. We are not a burden. This bill in its current form is harmful and should not be passed by parliament.
Please do not pass the NDIS Amendment Bill in this current form. It removes rights, reduces choice and control, and will harm people with disability in my community.
Submission 1780
I am happy to be contacted to discuss further my experiences with the NDIS system.
Thank you,
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