Submission to the Joint Standing Committee on the NDIS

Inquiry into the Capability and Culture of the NDIA

Jenny Boucher

The following submission is a public submission.

I am happy to attend a public committee hearing.

Submission Regarding Experience with NDIA

This submission outlines my experience of the capability and culture of the NDIA as I have assisted my son, to obtain the supports necessary for him to participate in society and have choice and control in the pursuit of his life goals.

 who has a diagnosis of Autism, Acquired Brain Injury, Moderate Intellectual Disability, OCD,

Chronic Anxiety and Depression became a participant of the NDIS when it rolled out around 2013- 2014, when and I were living in Victoria.

We did not use any funds from his first plan as we were not supported to understand what the plan funds could be used for or how to use them. We had no contact from NDIS to see how we were going with the plan. When the plan was to be reviewed one year on no-one called to do so.

In 2017 we moved to Victoria, an area where the NDIS had not as yet rolled out. This meant was once again without NDIS funding and supports. I have always been primary support person, having to be responsible for all tasks and day to day living. This has placed considerable stress and strain on my time and independence, emotionally exhausting my mental health.

When the NDIS rolled out in the area around 2018, was told to complete the forms to apply for support services and funding. As is unable to comprehend these forms or complete them, this was left up to me. This involved me completing a myriad of forms, make many phone calls, and attend numerous meetings. Throughout this process I felt I had to continually provide proof of many and varied disabilities. These demands were very stressful for both of us.

The NDIA process of meeting with a planner and setting goals for plan has been stressful for both of us. The NDIA planner insisted that attend the meetings, however listening to the discussion about his deficits and needs left him feeling depressed and anxious. also found the pressure of identifying reasonable goals stressful, confusing, and complicated. He had no idea what they were talking about, it just made him feel more confused, and he would shut down even more.

Throughout the time that has been a participant of the NDIS I have found most LACs difficult, handballing responsibilities and giving biased and uneducated opinions to others that is disadvantaging participants.

At a plan meeting a few years ago I requested a rollover of plan as the plan he had was working extremely well for him. I was told by the LAC this was not a possible, and that “the NDIA is going broke, and we have been told to reduce funding for supports”. At this point the LAC advised that the NDIA would do a light touch review (internal Language) of plan. I said that I did not want that to happen. However, my wishes were ignored. We also asked for a twelve-month plan but were told “NO” you can’t have that, we are giving you a 2 year plan. Throughout this process our right of choice was denied. We were not actually asked what we wanted to do, nor given options. This experience was triggering for me. I felt bullied, dictated to, violated, overwhelmed, and dissmissed. I felt my rights and rights and opinions, were abandoned and unheard.

At last plan review in August 2022 his funding was reduced by 75%, Support Co-ordination was taken away, and travel reduced 50%. The reduction in funding has resulted in supports being removed, and routine being upset. This has exacerbated anxiety as he does not understand why his supports are there one minute and gone the next, and has led to becoming isolated as he cannot engage in the community without support. There has been a marked deterioration in his language skills. Moreover, the removal of support workers has had a negative impact on physical wellbeing. He is unable to complete all necessary personal care

• tasks independently, requiring the support of a worker. However, without funding for a worker his personal hygiene has deteriorated as he is resistant to my supporting him with these tasks. Without supports, has no independence and becomes completely dependent on me for every aspect of his life, reducing my capacity to continue to have my own life, make a living running my own business, and limiting my ability to have plans and goals for my own life.

Without Support Co-ordination funding I am now forced into resourcing, creating, and navigating all of supports and services, alone. The LAC would only offer me a list of names that I would be responsible to go through, despite plan stating supports and services were now the responsibility of his LAC. This expectation has placed considerable strain on my available time and energy. In addition, it is not choice that I be both his mother and his Support Co Ordinator. Having to take on this extra role has created angst as is more willing to work with outside workers than me and we are arguing all the time.

Discussions around need for transport supports led to a LAC commenting “You chose to live where you are living”. This was devasting to hear. The move was to facilitate more independence for with more space instead of being stuck in a small backyard in However, this comment made me feel judged and discriminated against, and made me second guess my decision, quoting whether I had disadvantaged by moving to

Reducing funding and stating that the requested supports do not constitute ‘value for money’, was distressing for me. This made me feel that the NDIA considers my sons supports are not value for money, and that giving the opportunity to live an ordinary life or live his best life is of no interest to the NDIA.

Staff at the NDIA have requested further evidence before considering re-instating the funding for I am spending approximately 10 hours plus per week, and considerable financial resources, organising letters and reports to support the request for increased funding. Many of the requested reports are identical to ones already on file. This is frustrating as it indicates that the NDIA are not reading file before asking for further evidence. I feel I must again prove that lives with several lifelong disabilities. Moreover, the way NDIA staff approach this makes me feel like I am being unreasonable, that does not deserve the supports, and that I am trying to convince the NDIA of something that is not true.

Just recently I received a phone call from a NDIA staff member wanting to discuss with me my review of a reviewable decision application form regarding newest plan. I explained that my mother had just been admitted to hospital and I could not talk at that time. The staff member pushed me to make a date to have a discussion and was not happy when I suggested the following week. The following week I received a call from another NDIA staff member. At that point I explained that my mother was still gravely ill and that I could not talk to them right then and now as I wanted to be present for the discussion as important decisions needed to be discussed. They kept the call going regardless and instructed me they had received all the documents they had requested and would read through them and get back to me for further discussion. At no point did he say, this is your RORD meeting, and I will be making my decision after this call. Under stress and confusion, I agreed for him to read through the documents and report back to me with another call to further discuss the decision. The next communication I received was an email rejecting the requested changes to support Plan.

This experience made me feel upset and angry. Had I been informed that the short conversation I had with the second staff member was the only opportunity I would have to put forward

• case I would have requested more time. The decision being made without the opportunity to talk on behalf left me feeling like to the NDIA is not listening to us.

Overall, my experience of the NDIA has been traumatic, stressful and time consuming. I feel I have been treated with disrespect and the NDIA staff have been flippant in their attitude towards both and me.

Changes I would like to see to the capability and culture of the NDIA

• NDIA staff communication with participants and their family’s needs to be open, transparent and clear.
• NDIA staff need to be trained in trauma informed practice and be aware of the traumatic impact of comments they make to participants and families.
• NDIA staff need to take time to read files and reports, and have full knowledge of a participant’s story before requesting more information/reports etc.
• NDIA staff need to have better understanding of the impact of their decisions on participants and their families.
• NDIA staff should be trained in working with people living with a disability and their families.
• NDIA should employ more staff with experience of living with a disability and/or caring for a person living with a disability.
• NDIA processes and procedures around attending planning meetings etc need to be more flexible to accommodate the needs and requirements of participants.
• Private support workers need to be accountable to not only the participants, but I would also like to see them have to submit reports after every shift to NDIA showing proof of their works. They too need to be held accountable so as to alert for fraud and neglect to the participants.