- Hello, I’m , I’m a current NDI participant and I’m writing to you, the Senate Committee today because I’m genuinely concerned about the proposed changes and cuts to the NDIS.
The NDIS has been a game changer for me. After I had to leave my previous career of Special Education Teacher due to the degeneration of my own disability, resulting in my needing extensive and complex bilateral total foot rebuilds including muscle grafting and transfers to my lower limbs, and the crushing realisation that even these brutal surgeries and the gruelling process of learning to walk again (7 times I’ve learned to walk, just as an aside to evidence that I’m speaking from the perspective of one that gives every situation my all, no matter the barriers), that returning to my profession was untenable, my disability was impacting not just my ability to return to work, but also every facet of my life. While I was coming to grips with this, my world shrank. I was socially isolated, unable to leave the house without support, which was a burden on my ageing mother, so I only went out to go to medical and allied health appointments. I was self-funding my rehab and finding private health was nowhere near sufficient for my needs. Giving me only 7-10 physio appointments for example in a calendar year, when I needed weekly appointments for manual therapy to maintain as much muscle function as possible, and weekly appointments for supervised exercise programs. But even this wasn’t enough, I was using all of my energy and all of my money at physio, my house was in a horrendous state and I felt shame that I was unable to keep up the cleaning and maintenance of my home. I refused offers from friends to visit not wanting anyone to see my home in disarray, the floors unvacuumed and un-mopped, the dishes piling up in the sink. I wasn’t eating well as I had no energy to cook meals, and quite frankly, my dismal balance and co-ordination, as well as poor fine motor skills and worsening neuropathy, made using knives, and being around hot things in the kitchen increasingly dangerous. I was also having some extreme cognitive overwhelm and brain fog impacting my executive functioning, though I didn’t realise how much until later. I was not safe. I experienced falls in the kitchen, the loungeroom and the bathroom, transfers from sitting to standing or from moving from a stationary position were dangerous. I was really in trouble. My ageing mother, who I share a home with, was at the time still working, not yet retired, so I was on my own a lot. And still I didn’t realise that this was it, this was me, only it would get worse on my trajectory at the time. It wasn’t until a local disability advocate and my long time GP both approached me on the matter of support that I began to understand how much help I really needed. Not going out of my house, cut off from everyone, surviving on crackers, bananas and meal-replacement shakes, living in increasing squaller was not living. My situation was grim to say the least.
When it was suggested to me that I should apply for the Disability Support Pension and the NDIS. I was accepted into both, extremely quickly, and to my astonishment. I had to accept then that I wasn’t just ‘failing at life’ as I think I had begun to frame things in my own mind, but that there was a legitimate reason for why I wasn’t coping. I had to step up to the reality that I am a person with a significant and permanent disability, and I do need support. I had always tried to live an independent life, I didn’t want people to know how much I was struggling.
NDIS has been a lifeline for me and its allowed me to not just proactively manage my degenerative neuromuscular condition, but has allowed me to return to the workforce
- engage in, and give back to the community.
I am able to have the weekly physiotherapist manual therapy I need, weekly exercise supervised and supported nuero-focused exercise program, I attend gym (programmed by my physio and Nuero EP) to build and maintain my strength and function with the support of support workers,
I have a home that is clean, and I have healthy meals prepared for me through a cooking service that comes to my house once a month. I have support workers who assist me in tasks of daily life, and to access the community to be able to go to work, to attend social events, peer support meetings, and the Incorporated Association, Is Everybody Here? Which I and other disabled people, and parents and carers of disabled people in the community, started to inform, and empower disabled people in our local community of Moreton Bay. I also work 12 hours a week in paid employment, I live a life worth living. I couldn’t do any of this without the NDIS and the funded supports that I receive through it.
I can live safely in my own home because of the OT scripted modifications to my home, including grab rails, and voice activated lights, fans, air-conditioning, and blinds in my bedroom. Unfortunately, in the last sweep of NDIS cuts and changes, I lost my funding to maintain the smart home mods, this wasn’t grandfathered with the changing rules. Creating a financial burden to me, but so far because I’ve been able to return to work in a part time capacity, so far I’ve been able to finance this, at least for now. Its something that I need in life as evidenced by the OT scripting of the modifications.
I think I’ve explained enough how the NDIS has positively impacted me. What would change though if I lost funding to:
Social and Community Access funding: Losing this funding would mean that I would have to give up my paid work. I could not attend work without this support, as fatigue is a major part of my disability. My support worker helps me to get to work, helps me set up my equipment, and assists me when I am at forums, functions, and other non-office site work related places, including when I need to travel around the state as part of my work.
I would also have to close the Incorporated association and the disability podcast that I started which also closes down opportunities not just for myself, but for other people with disabilities, their families and people connected to the disability sector.
I would also be unable to meet up with friends, go to appointments, shopping, or go to gym, as all of this depends on my having support.
My world will be small again, grim, without hope or purpose.
What would happen if my capacity building funding was reduced or removed?
The degeneration of my disability would accelerate, I’d become more disabled and without support, I would be unable to engage in any of the therapies that could help me, that are not a ‘one size fits all’ and need regular adjustment on the day to match where I am at. Without this customised 1:1 support, I would be very much unable to stem the degeneration of my disability, and would be soon in a wheelchair, at present I use a mobility assist that allows me to still use my muscles and keep the neural pathways needed to walk functioning.
Wouldn’t have the strength, balance or coordination, let alone the motor planning ability to use my current mobility assist, and so would be forced to use a wheelchair and so would lose my mobility entirely. I don’t want to think about how much I would lose if I stopped or reduced these therapies. The idea that this therapy should be considered as optional is ludicrous and cruel. The uncertainty that we are being forced to live with certainly is.
My biggest fear is that I will be removed from the NDIS entirely. Some bureaucrats with no allied health training can assess my function from some standardised test and totally disregard any and all reports from my allied health professionals seems like the gravest breach in Duty of Care, and human rights. Yet if this bill is allowed to pass; it will be government sanctioned… tell me the government doesn’t want us dead, or at the very least shut away, quiet and disempowered. Because that’s exactly how it feels right now to me.
Sincerely,