To whom it may concern,

I am not sure how to put into words how I’m feeling about the new bill: Dread? Guilt? Fear? Shame?

I feel like I’m being made a scapegoat for something I haven’t done. I have always used the service appropriately and if in doubt, checked with my support coordinator or LAC, or even the NDIS itself.

I am now feeling like I can’t mention in public that I am on ndis as I am getting judged as a scammer or a fake.

This service has been life changing for myself, my adult daughter (also on NDIS) and our primary carer (my husband/her father). It means that I have time to spend with my husband as a partner, rather than him spending his weekend catching up on things I used to be able to manage whilst working part time.

Until 5 years ago, I ran my own growing business, teaching 6 classes of sewing lessons a week and a couple of self development/art therapy workshops a month. It was expanding with requests for more lessons and private sewing jobs such as designing performance puppets, toy prototypes and doing sewing adjustments and repairs and making one-off designed clothing items.

5 years ago I developed Dysautonomia, POTS, MCAS and chronic complex migraines (up to 6x per week) with associated non-epileptic seizures. This is a rare condition that is as disabling as COPD and congestive heart failure. It varies day to day/ hour by hour and is unpredictable. It impacts every part of my body that is controlled by my nervous system (basically every body system) and for me is severe, debilitating, incurable and lifelong. After trialling every possible medication, treatment and remedy, I am still mostly chair or bedbound most days. If I go out for a social occasion or appointment, it takes me several days to a week to recover.

Ndis has meant that I now have someone to help me each weekday whilst my husband is at work (he owns and runs a small business/factory in the mailing industry). This means that the laundry gets washed, dried, folded and put away, the beds are made each day and changed once a week, the house is cleaned, the kitchen cleaned and dishes washed. I also have meals made (as I’m on a special diet, different to the other 2 members of my family). I have someone to drive and accompany me to appointments. The support workers also help look after my cat as I’m unable to bend down to clean his litter tray or feed him without causing dizziness (and I’d be lost without my cat!) I have funding for support coordination (which has been invaluable for finding appropriate services and providers) including psychological support, a dietician, a podiatrist, a massage specialist, occupational therapist and an osteopath. I also have help maintaining my garden and doing chores outside that I’m now unable to do - all this

• also takes the pressure of my husband as a carer as he now has more time to spend with me as my partner and to be also able to spend some time on his hobbies. I have also used ndis funded short term respite as a way to take the pressure from my husband in his caring role and prevent carer burnout.

• I have been able to afford a walker, a powered wheelchair and a walking cane to support my mobility and maintain my confidence when I’m outside the home. Ive been funded for a recliner chair built to my body size, an electric bed, which means I can most of the time get up on my own and can find symptom relief by being able to elevate my legs to increase blood flow to my brain. I have a cooling device for my bed as I’m able to regulate my temperature. I’ve also been funded money to allow for a bathroom remodel to make it safer for me to shower by myself (providing built-in seating in the shower, wider shower door access, non-slip tiles on the floor and a bidet/smart toilet to be able to wash when needed and maintain my independence and dignity)

• With the current system, I have 3 regular support workers and 2 other relief workers who are very familiar with me and my condition and how it can vary. I’m confident going out with them that they can pick when I am getting a migraine/seizure episode and trust that they will keep me safe and be able to give me medication, speak for me and generally look after me until I recover.

• All of these keep me functioning as best I can and takes the pressure off my husband meaning he can keep working and earning enough to pay for medical expenses that we incur now (medications alone are often $500 per month, tests and procedures have been up to $8000 per year).

• If the ndis changes, I fear that I won’t be able to use my chosen providers/ support workers as many of them aren’t registered with the ndis, even though they are highly educated, qualified and registered with their individuals professional bodies. I fear that my husband will have to spend more time at home looking after myself and my daughter.

• I worry that my funding will be significantly reduced as the majority of it falls into the social and community support category - this is where I pay my support workers from who take care of my home, as well as drive and accompany me when I leave the home for appointments or social/entertainment reasons. Never have I used funding to pay for entertainment, only to pay the workers to drive, accompany and provide personal support for me. They don’t even have to pay any entry fees as I have a companion card to cover this expense.

• When I was sourcing quotes for my bathroom, I contacted four different companies - 3 were companies that only did ndis work and were recommended by my OT and one that we have used for major works in our home in the past. The 3 that worked only with the ndis required a few paid to even come and quote the work, ranging from $250 to $750, which of course came from my funding. The plumber/builder that I’ve used previously,

came out for the longest time, wrote the most comprehensive quote and didn’t charge anything to do this! My own builder and 2 of the others came in at just under $50k to do the same job. The other company (which was the one who charged $750 just to quote the job) was going to charge us $102,000 for exactly the same brief as the others.

So that is over double the cost for doing the exact same job - surely this is where cuts could be made from the ndis?! If I hadn’t gotten multiple quotes and just used one that was an ndis recommended company, then I could have cost the ndis an extra $55,000, which would have gone straight into the pocket of that company’s ceo! I did email the ndis/government fraud report address from the ndis website and basically got told that this isn’t fraud and there’s nothing that can be done about it.

So instead of the government going after companies who would happily pocket over $50k for a single job, over the amount that the job actually cost to do, they are going after people like me and my family, for whom the ndis has been truely life changing.

I’m the one who now feels ashamed to admit in public that I’ve got ndis funding. I feel like I’m being judged on social media as a fraud, as a user, as taking tax payers money. And I’m so so scared that the funding will be reduced or taken away and the impact that will have on my physical and mental health and also that of my husband and daughter. I honestly don’t know if I would survive without ndis funding and honestly feel that my life would be such a burden on those I love that they would be better off without me. And yes, I do seriously worry that I may become suicidal if I didn’t have the support provided by ndis. Please don’t worry - at the moment I am very well cared for with a psychologist and other physical therapists and am not at risk right now. That said I know without these supports, I would not be so well, physically, mentally or emotionally.

For me the NDIS is literally my lifeline. Please help shift the focus of this new bill from vulnerable individuals with disabilities and onto companies and providers who feel they can easily charge and then pocket excessive fees because “the government is paying for it”. They are the ones who are causing massive overspending. Not people like me.

I guess I found some words!