To Whom it May concern,

As an NDIS participant, I am making this submission here as feedback relative to the NDIS Amendment Bill which is currently under review.

My feedback is as follows:

• Please establish legal requirement that The NDIS Minister co-design principles (eg in subsection 4(9A) of the NDIS Act) genuinely creating avenues for feedback and rightful consultation with the Disability Community
• I strongly request that The Minister provides a statement describing the nature of the consultation, The people and organisations consulted and a summary of the views expressed by those people and organisations, for all legislative instruments made under the NDIS Act. Inclusion of participants’ feedback is fundamental right and key to determining the right approaches and most effective use of funds. -In my own situation I was wrongly coerced as an NDIS Psychosocial Participant, to be subject to an OT assessment in 2023 (having already been a participant since 2020 based on GP and Psychologist and Therapist reports from current to spanning back decades) to ‘determine’ my Psychosocial Disability needs. Despite my repeated assertions that I was not confident the 3 OT’s I genuinely tried to connect with), were properly trained in Psychosocial/Mental Health/Trauma informed disability who has known me over time… Were not understanding my needs enough to even be ‘assessed’, my assertions were dismissed very politely, but dismissed. I was pressured (then told I wasn’t being pressured when I raised this with those pressuring me) by 2 Support Coordinators and 3 Support Workers that ‘…. (OT’s name) was a lovely person, a good OT’ etc…. but their approach and when I enquired, made it clear that OT’s are trained overwhelmingly in physical disability OT. Assessment from my Psychologist and Therapist (who had worked with me for years), with up to date testing and analysis, would more than adequately inform the NDIS or anyone about my daily struggles, weekly, monthly and across decades and what my needs are on that basis. I knew that then and assert my choice in this matter now. Under pressure, (from an NDIA Planner, 2 Support Coordinators, I reluctantly agreed to try assessment with 2 strange to me OT’s. I tried 3 OT’s. Their lack of training and nuance relative to Psychosocial and trauma-based Disability was utterly devastating. I had to sit with a complete stranger in my home, (yes, the result of ‘strong suggestion’ by my SC and SW’s). for hours. I am a trained and practised Counseller and Gestalt therapist, so I knew that on

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the basis of my own professional experience and on my own experience and gut feelings, than later complete despair as a result that this was not right for me. Over $1500 of my funds was completely wasted seeing 2 OT’s. The undermining of my mental health, social confidence and exacerbation of my disability was evident and strained what few remaining personal and professional relationships I had. How this force to get an ‘OT Report’ was effecting me was not understood by my Support Workers, Support Coordinator or Plan Manager at that time. It is terrifying to be in this position. I was basically told to get on with it, ever so politely ‘because this is the direction the NDIS assessments are taking’, ‘It’s for your own good’, and so on. My trust in any of these people to see or hear me and understand my increasing despair, was shattered. My relationships with psychologist, SW, my whole NDIS world (which sadly is my whole world at times) were tossed around by this force from the NDIA to SC to Plan Manager, to SWorkers, all of whom stuck with the hard but unclear line about ‘having to get an OT report’. I lost all my Daily Supports and my Support Coordinator in one week, because they were not assertive enough to assert on my behalf what was my right, which they did not even remind me of or assist me with: That I could get a report from those trained to do so and not just from an OT. Having no family or friends, this left me utterly bereft for several weeks and on and off for several months, still effecting me today, leaving me unable to function, use my funds, move towards achieving my goals all up in the air.

I spend weeks eating toast and having cups of tea, stuck on the couch, taking medication I don’t want to be dependent on, to dull the pain and keep me alive. This has led to me running out of funding to the point that I don’t know how much support my funding can afford… for this 4 weeks remaining on the current one year of my plan. I subjected myself to having an OT assessment in the last months. The OT was very excited about yoga and breathing excercises and I literally had to remind her that my funding was there for assessment (at that stage) and that I was not finding and did not wish to continue with her charging me hugely for breathing excercises and yoga. I am very familiar with breathing exercises and yoga, but knew it was not ok for me at that time. I tried and it was waste of my time, and hope and funding. My funds have actually been drained by this OT and then 2 Support Workers who know her and (vice versa and) recommending each other to me locally. This sets me back, way back in terms of moving forward. It threw my funding budget up in the air and leaves me vulnerable to future support ‘force’, exploitation and pain. I am now determined to find the right way for myself and to satisfy what I trust the NDIS will find to be very good assessment reported recommendation based on my needs, determined by thorough and appropriate training, the right practitioner for me, establishing familiarity with me over time where possible.

• In addition, my vicarious experience of mental health ‘services’ as a child (excuse me but I am not a car) has been traumatic and one basis for my disability.

• This has meant that finding a GP and good therapy independent of mental health systems has been very important, so choice about specialist support and assessment is likewise, crucial.

• There have been times - from a few weeks to a few months- where my supports have been consistent and appropriate to my needs and I have moved forward with my days, weeks and even months towards my NDIS and other goals. This is when the NDIS has worked well for me.

• The voice of participants must be the foundation of our plans and not overiden, buried by protocol, the job/business creation scheme (excuse me but and ) that it can be.

• People have and will suffer immeasurably and die/d. NDIS funding is wasted, misdirected ; participants and good support people left without proper job satisfaction and care,

• where inappropriate ‘experts’, systems, hoops and vacuums are left for us to try to live through.

• I trust that these points relative to this Amendment Bill will ensure basis of funding rightfully determined with goals fitting and supports in place for continuity and care so participants including myself, can actually get on with my life, benefit from and contribute to community, build healthy relationships including social life and maybe even have a holiday and get beyond a 50km radius of my home (in my case)with the right support.

In trust that this submission will be well received and given due consideration, Kind Regards,

Janine Guice NDIS Participant