Inquiry: The Capability and Culture of the NDIA.

I am happy to be contacted to give further detail. Thank you for this opportunity to have our experiences heard.

Kate Daniel

Summary :

My experience of engagement with the NDIA in advocating for the needs of my autistic son for the past nearly two years, has been distressing and painful for myself and my family.

The system is broken. These three systemic markers dominated our experience:

1. Lack of transparency of the NDIA processes and decisions.
1. Enormous power disparity between the system and NDIS participants.
1. Lack of respect and acknowledgement of the experience and knowledge of people with disability and their family and carers.

Urgent work needs to be done to dismantle and disrupt these damaging components of NDIA culture. Those living with disability must be empowered within the system that was built to support them. Our knowledge and experience must be reflected in our support plans to direct what we may access. We are of value.

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13th December 2022

My name is Kate and I am mother to our beautiful, creative 8 year old son.

In early 2021 was officially identified and diagnosed as being autistic. was 6 years old about to turn 7. He did not have any early intervention support.

Our journey with the National Disability Insurance Agency following this diagnosis and our recognised need for support, was traumatic, distressing, disempowering and painful. The personal impacts for myself and my family from this battle with the NDIA through its system processes, are ongoing. The past nearly two years have been the most distressing of my life. Having to learn to advocate against a powerful system as a mother and carer has been traumatic, and the NDIA has increased exponentially what was already a challenging and stressful life. I am deeply ashamed of what the system put me through, and know that it has additionally brought this pain on countless other people with disability and their families and carers. I have made the decision to continue to speak out about our experiences because this broken system needs to be changed. I want to assist with that change. I am happy to be contacted to further elaborate if necessary.

From my experience of engaging with the NDIA, there are three stand-out systemic markers that continued to be repeated throughout. These are:

Lack of transparency of the NDIA processes and decisions.
Enormous power disparity between the system and NDIS participants.
Lack of respect and acknowledgement of the experience and knowledge of people with disability and their family and carers,

Each of these three faults reflect the dominant over-riding view that the NDIA intrinsically does not understand disability, and in our case, autistic people. If the NDIA did understand and comprehend disability authentically, the systemic processes and procedures that I was forced to endure and battle would not exist. Our case is not rare, there are many experiences similar to my family’s. Systemic change needs to happen, and quickly. I cannot over-emphasis how damaging this system has been to myself and my family. It has been a journey of pain and distress. I believe intimidation tactics have been purposefully inscribed in the culture of the NDIA to discourage and dissuade NDIS participants from reviewing NDIA decisions. The adversarial nature of how we were treated was shocking, disempowering and unjustified.

Following my son autism diagnosis, we waited five months for the NDIS process to take place, and for to finally be allocated funding in his first plan in August 2021. Once I received the plan, it was immediately clear that the funding amount was inadequate and insufficient. It would not pay for the minimal support that required. I immediately began working on the Review of a Reviewable Decision (RORD). From the very beginning of this process, I have had the support and professional insight from the disability support professionals that funding was inadequate. Those within the disability and support

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System understood the beginnings of what needed to access. They informed me that what the NDIA had allocated was insufficient for his needs. Professionals responded with gasps and disbelief when they learnt the amount that plan had been allocated. The sharpness of their responses, the time it took for the NDIA to initiate entering into the system as a participant, and the lack of funding allocation despite being informed of his requirements illustrate that from the beginning the NDIA did not understand his life and disability, and what was necessary. Or alternatively the NDIA did understand, but were indifferent to my son’s support needs. I feel we were given the very minimal amount as a cost-saving strategy.

The battle with the NDIA took over my life. Because of our busy, intense, challenging life, which amongst various other commitments, incorporates parenting multiple neurodivergent children, the internal review process took me nearly the three months given as a time limit to complete. This process was traumatising. I was advised that I should do the job of the NDIA for them. Again outline, explain, illustrate all the challenges experiences to further justify why more funding needed to be allocated for his support plan. This required me to further explain in brutal, vulnerable, raw detail the intimacy of our family life. Our pain, our distress, our discomfort, and the guilt of exposing all this detail of our challenges to give over to an indifferent system. This brutal process exacerbated my earlier diagnosis of carer’s stress. This review process pushed me further into burn-out. I was crying with distress and pain every time I sat down to describe our life. I sought out further supporting documents from allied health and medical professionals. I contacted, continually, State and Federal Members of Parliament to enquire about advocacy, information or support that I could access. I initiated seeing a psychologist for the distress the process with the NDIA caused. All of my engagement with the NDIA has been burdened with disregard, disbelief and disrespect. I have had to prove my son’s need at every step of the way. All of this whilst still attempting to parent three children, multiple of whom have additional needs. I also knew that if I found this system response difficult and seemingly insurmountable, as an educated, abled (though burnt out) woman with limited barriers, imagine how many other people may be facing this same system but have too many barriers in their way to get their funding decision reviewed. Barriers such as ability, time, knowledge, access. If I, as a person of some privilege found this incredibly challenging, what did that mean for people not so privileged? The broken system needs changing, and for that to occur, feedback about its broken-ness needs to be heard. Truth to power indeed. I am angry about how broken and traumatised this system has made me. I am angry about how much I have had to expose of my family. I am distressed about the constant repetition of re-telling our story. I am angry and heart-broken about the pain and distress that this system has administered. To the very people who need support the most. I am ashamed of this system and how it treats people. Please work to change it. It matters. We matter.

In December 2021, following my RORD submission, with no contact with me, the NDIA emailed me a response stating that they stood by their original decision. Littered throughout their response to our professional recommendations for recommended and necessary supports for was the phrase “not value for money”. The distress, heartbreak, offence and anger

at reading this document is indescribable. Our son’s challenges and needs were disrespectfully and callously dismissed. We were informed that he wasn’t worth the money it took to fund his much-needed support.

After reading this document we knew that we needed to challenge the NDIA’s decision further. We knew that we would have to take it to the next stage. The next stage being the Administrative Appeals Tribunal. I also knew that I could not do another review process by myself. My psychological health and well-being would further deteriorate if I attempted the process unaided. So I began seeking out advocates. Despite overwhelming demand for their services, I was able to access an advocate for the AAT process. We applied for legal aid but were denied it. It is important to note that advocates can assist in navigating the AAT system, however they do not provide legal advice, guidance or support. So whilst we accessed an advocate that I am grateful for, it was no match for the highly paid lawyers that the NDIA enlisted.

The AAT process is gruelling. It is a traumatic system that actions a huge power imbalance. The NDIA and their lawyers, in this system of review, further dismissed and disregarded our reports, challenged us of our professional recommendations, disbelieved us and the people who assessed and understood It is the most blatant act and process of gaslighting that I have ever experienced. I laid bare the intimate, challenging details of our life as a family and the NDIA disregarded our experiences and knowledge. The NDIA through their lawyers demanded further information and clarification despite having numerous reports from our diagnosing psychologist, occupational therapist, speech pathologist, and paediatrician. I again, was in constant communication with numerous State and Federal Members of Parliament explaining our circumstances and trying to access some kind of support. I continued to scream out for support, advocacy, assistance. Whilst those I approached were generally empathetic, the common response was that once you are in the AAT process, it allegedly became an independent process and no ministerial intervention was allowed.

Due to the NDIA’s demands for further clarification, we spent $1258.96 out of depleting and already insufficient funding amount for further professional reports. This was vastly wasteful and inefficient and meant that we had less funding for supports as a direct action of the NDIA.

Our plan funding depleted in June 2021. Twice we submitted a request for s42D remittal funding leading up to this and twice the NDIA rejected our request. Our third request was met with conditions from the NDIA. It resulted in us being pressured to sign remittal funding that would allow us to access weekly occupational therapy and fortnightly speech therapy for however it excluded our autism facilitator, a professional who had developed the longest support relationship with Together and Phoebe had over time developed trust, rapport and safety. The NDIA stated that this support replicated the support of the OT and speech pathologist. This is untrue.

The NDIA’s actions illustrate that it as a system does not understand disability. The exaggerated power disparity between NDIS participants and the NDIA and their lawyers

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during the AAT process shows the adversarial nature of the process. The process made us feel intimidated, bullied, scared. The power dynamic, the drawn out time the process and the lawyers’ actions took, and the obscene lack of transparency of NDIA decisions illustrate the disregard, lack of care, mistreatment and innate lack of understanding that the NDIA has towards people with disability and their families. We attempted to engage in discussion of how the NDIA had come to their decisions, opinions or conclusions about the support they believe required. This was blocked consistently. We were told that either support was being replicated by support workers or that it was not necessary and reasonable. I requested to know who made these decisions and what their professional qualifications, experience or expertise were but these enquiries were dismissed and ignored. The powerful decision makers making life-altering decisions about the vital support that my son requires, have no means in which to be challenged or investigated in a transparent way. We understand our son, we trust the professionals who work with him. And yet bureaucrats with zero transparency made these important and life-changing funding decisions. Power needs to be with the people who understand the support necessary. Funding decisions need to be personalised. People with disabilities are not algorithms. Those with the insight and experience need to valued and listened to. This is not occurring.

Due to the rejection of our s42D funding requests, the NDIA’s negotiation tactics and lack of flexibility in August 2022 we owed numerous support services thousands of dollars in therapy invoices. The additional stress this put on us as parents should not be minimised. We felt guilt to the support services for being overdue in payment. The back payments have been rectified now but only due to my advocacy work during the AAT process and in contacting Bill Shorten’s office for clarification and information.

The NDIA, without disclosure of where or what they based their opinions on, rejected the recommendation that required autism practitioner support and psychological support. Instead we were offered Positive Behavioural Support. I asked questions of the NDIA in our second case conference about why they had suggested this as a support option. I wanted more information. Their response was to read to me information that I had already been emailed, word for word. This act was particularly uninformed, demoralising and patronising. From my own research, I found Positive Behavioural Support (PBS) to be inappropriate for needs. We know we and his support workers know what he needs and it most definitely was not this.

I was additionally deeply concerned for my son’s privacy and the legality when I was informed by email from one of the NDIA lawyer’s during the AAT process that an independent assessment appointment with an apparent paediatrician had been scheduled without our knowledge or consent. We were unable to access any legal advice around this. It was deeply unsettling and intimidating. The feeling of disempowerment and fear that in addition to all of this difficult process, now this institution, this government agency and their lawyers, can and will make medical appointments for our son without our consent. I felt powerless.

Experience with the National Disability Insurance Agency (NDIA)

Following two case conferences, many emails, personal discussions, further distress and doubt and ten months locked in the AAT system battling the NDIA lawyers, we came to an agreement about funding for support. I feel the lawyers and the NDIA conceded to our experience and support requests rather than agreed and valued them. How the plan is written up seems more a way of ‘saving face’ for the NDIA, rather than to acknowledge or uphold what we need for We checked and triple checked that we could use funding for psychology and our autism practitioner, even though the NDIA stated these supports as not reasonable or necessary. We were upfront that if we were allowed to use funding flexibly that this is what it would be, in part, spent on. The lawyer and our advocate acknowledged this, and said that it was an acceptable use of the funding. I, however, have no confidence or trust in the system, and am still anxious that NDIA can and will use their power to punish us. I fear being audited as retribution. I worry about what will happen when current plan ends in September 2023.

Amongst all the many impacts I have felt as a parent and carer experiencing the NDIA, there have been significant impacts on our family and life. This damaging process is responsible for substantial stress on my family. It has stolen time away from us as a family that we should have spent with our children, it has forced extended family and friends to offer informal support. Our elderly parents have been fraught with worry at what we have had to experience.

At the beginning of our engagement with the NDIA I was volunteering in order to gain more experience to prepare to re-enter the workforce. I was forced to give this up because the process of advocating for my son became a full-time job in itself. Our children had to witness their parents in constant distress and anxiety. This is not supporting and investing in those with disability and their families. Our experience of this system illustrates how people should not be treated.

Throughout our engagement with the NDIA and the AAT, we were treated as the enemy, having to constantly and repetitively justify and re-explain our son’s disability and his support needs. I absolutely feel that the NDIA does not comprehend or understand how disability informs our lives. The system is adversarial towards those with disability and their families, and this is deeply detrimental to our health and well-being. Advocacy work, when engaging with the NDIA requires extreme resilience, strength and perseverance. It should not be so. Our well-being and health should not be the price we are forced to pay to advocate for what is right.

Thank you for listening to our experiences.

Yours sincerely,