Submission 1735 - Supplementary Submission

Submission to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Attention: Committee Secretary, Senate Standing Committee on Community Affairs Submitted by email: community.affairs.sen@aph.gov.au Date: June 1 2026

deeply sorry that this is taking longer than expected but we are doing our best. Dear Ndis, we have a love hate relationship - love that you have given me my life back a Wheelchair that fits the ability to wear shoes again and protect my feet safely to drive a car, enough food in my fridge that’s chopped up or pre-cooked so I could eat it (I pay for the food the Ndis pays for the Support Worker).

Most people only know that version of me. The successful Paralympian Wheelchair swimmer who went on to be Australia’s first female para Triathlete to win a medal at world championships. Well, I’ve had a disability since early childhood. I also had the support I needed. A family who had the capacity to help and equipment that I could afford to pay for myself when I needed hand controls for my car and a lightweight manual wheelchair that I could push got me around the world, through University and out into the workforce.

So what’s the hate in this relationship?

The NDIS didn’t exist when I did all of those things people know about. My sporting career came to an end when my body suffered severe overuse injuries in my arms, neck and chest from decades of doing everything with my arms. Well, I grew up using a wheelchair redacted I really hadn’t felt too disabled, part of the Disability community or shared the experience of relying on support workers and inefficient government system systems. It was when I needed help that it discovered much to my horror that despite having worked, paid taxes and done everything I could to do my country proud, the help we assume is there for Disabled Australians when we need it just wasn’t.

What followed was nine years spent living in bed hungry - living off muesli bars because I didn’t have access to support workers, often in a puddle of wee or poo waiting for the NDIs so that I could have a powered Wheelchair because I couldn’t push myself to and from the toilet. I wouldn’t have gotten through those nine years without a Charity called Spinal Life Australia and one particular occupational therapist who I reached out to through a Job Access explaining my job was in jeopardy. She managed to get me voice dictation software so I could continue working as an event manager, Power assist Wheels to get around and was in the process of trying to navigate working out how to get funding for my first ever powered Wheelchair when I lost my job anyway because despite the items being approved, there was still a very long time before they arrived,

Submission 1735 - Supplementary Submission

was set up for me and I could use them. But then the business had to close down and I had to work for myself. This is an example of life without the Ndis. That was as a journalist who couldn’t really type or hold a phone to dial a phone number who was now trying to earn $7800 for a co-payment towards a powered Wheelchair under the state-based system at $.20 per word with a laptop in my bed. It took me years. It’s another year and a half for the occupational therapist denied to figure out how to customise that Wheelchair “pinky” to my unusual anatomy, you see I have a crooked spine with scoliosis and kyphosis because I was paralysed when I was young so I didn’t have the muscles to help my body grow straight. That means I can’t use a wheelchair you buy off the shelf and I can’t drive a joystick to move the wheelchair because my arm can’t reach there. But after a lot of trial and error we had a Wheelchair with a Back rest made out of a swimming pool noodle, some tape and cable ties and a prototype and suddenly I back to my old life. Except for one problem - the chair weighed several hundred kg so it couldn’t go in my car. Without Ndis funding and supports it was completely up to me to learn about vehicle modification by travelling to modifiers, doing a lot of Internet research and then start a very long fundraising campaign. Eventually, I managed to buy a vehicle and during the beginning of modifications to have a lift in the back so we could transport me in my Wheelchair with a view to having the vehicle being laid out in such a way that it would be able to get converted to Self Drive in the future. 12 years of social isolation basically stuck at home between not able to go out because of no Wheelchair at all and then only to go short distances from home in the Power Wheelchair.

I learned buses are not really wheelchair accessible. A ramp doesn’t equal Wheelchair access when you have no balance and you’re in a very heavy powered Wheelchair. The minute the bus turns the corner or stops and starts, it flies you out of your Wheelchair and then I go rolling down the aisle of the bus being chased quickly by the heavy strong powered Wheelchair which hits all the passengers too on its way towards the front of the bus. 랱랺랻랼랽rawid after trying that to catch a bus to the train station to catch a 2:30am train so I could be at work in the capital city for a 9am start, I realise that was no longer safe. The car Fundraiser was my only option. It wasn’t until I had Ndis funding though that I could actually find people to drive me. This time period was extremely socially isolating. Anybody who I did see I had to ask for favours and friendships ran out fast when everything is one way asking for help. Friendships also die out when you stop turning up when you’re not there for the weddings, the birthday parties, the funerals. You’re just not there. You aren’t part of the family and friendship group therefore you don’t get the jokes about all the times for the things you weren’t there.

That’s why this new creation called the Ndis that was going to arrive in 2019 was life changing and I couldn’t wait for it - nervous about what the logistics would entail but

Submission 1735 - Supplementary Submission

excited to get on with my life again after pressing a pause button. I arrived at the Ndis office on the first day it rolled out in my area and was the very first one to get a plan. I lived in the last place in Australia that the Ndis rolled out to because it rolled out postcode by a postcode. I used my time in the lead up to learn from people who were already part of that system what I would need and came to my first meeting prepared with reports, quotes for what I would need and have completed the entire workbook requested.

I made sure everybody knew that my amazing powered Wheelchair “pinky” had reached the end of her lifespan. In fact, only the week before the state-based system Mass (medical aid subsidy scheme) had written her off with a cracked Chair. I would’ve had absolutely no Wheelchair at all as someone who couldn’t walk had it not been for the chance timing of rolling onto the Ndis which meant that the broken Wheelchair was now my property and I was free to take the risk of using a Wheelchair that was snapped in half but could still tentatively drive. We often hear that Disabled people are scared of change and that’s why we don’t approve of the changes in the Ndis legislation. I believe my story shows nothing could be further from the truth. We learn, we adapt and we overcome. What’s with the ‘scared of change’? We just don’t agree with change if it’s not actually for the better. In this instance, I referred to a decision which took over a year for the Ndis to Make. It was decided that we did not need a replacement for “pinky” because there were other cheaper alternatives so it wasn’t reasonable, necessary and cost-effective. The letter about this arrived in the mail on the day when my one was one month window to appeal. The decision closed.

Because I can’t type that meant a Support Worker had to be paid nighttime rates to stay up with me all night and into the next day to get a submission in immediately to appeal this decision about the not reasonable, unnecessary Wheelchair. The reason I’m writing this is because nothing in this legislation will fix problems like that. The problem then did not stem from legislation. It stemmed from rules, operational guidelines, staff training - basically the implementation of the Ndis. Those are the areas from which we will be finding the most opportunity for changing and any improving the Ndis going forward.

That is significant set by having left me stuck in bed several hours from home for three years in a couple of the city attempting to resolve it because I could not even get home. My experience with the Ndis has been life changingly positive.

Before the ndis

Point care was provided through a nursing service patient. Couldn’t determine the day of the week all the time. You didn’t necessarily have the same nurse every time. I had

Submission 1735 - Supplementary Submission

complicated nursing needs in terms of that when you are paraplegic with a wound on your bottom need to do a toileting routine have a shower first because it will probably fall off when you do those and then you don’t want the dressing fallen off with a bear wound afterwards so you need access to Nurse to put it back on straight after. The companies weren’t able to arrange this timing. Many of the nurses themselves actually agreed on this being important but you’re at the mercy of management of a large company who block funded by the government and I had no say if the service wasn’t any good. Because of the system I completely missed a job interview was late for another job interview. Wasn’t able to intend induction with students on placement with my business and they’re not for profit Iran at their universities., miss family gatherings and how do you work for Myself dropping out of the workforce to name a few examples.

In-home support was no different also contracted to one service provider. They chose the person, the day and the time. The things I needed assistance with – work, cooking, cleaning, washing, collecting groceries, and collecting the mail. One would think that you were therefore send somebody who had those skills. But somebody tried to boil an egg without water burning and damaging my saucepan. Another hilariously tragic time, somebody read the to-do list that said water pot plants while I was stuck in bed due to my Disability and watered the plastic Christmas tree (common sense is not so common) which my family had all brought their presents around and put under ready for Christmas Day. I could not afford to buy more presents that meant nobody had anything for Christmas because it was all completely water damaged.

The attitude upon attempting to resolve any of these issues or find something more workable, such as could we choose one day of the week if we can’t choose a certain time, created more problems and damaged the relationship I had with the service provider.

After I met you dear Ndis

I love my life with you in it. It’s been life changing for the better. I can’t believe I had to spend nine years in bed waiting for the Ndis to exist without the help I needed and well, I’ve hated some of the teething problems of a new scheme they weren’t at the level of legislation.

• Now I hire my own workers. Not only do I get to choose who’s coming to work and make sure they know how to cook and do the list of things I need help with, I get to post the job ads to make sure we are compatible. For example I work from home running a small business and doing Charity work. So desire to hire an ex Journalist who

Submission 1735 - Supplementary Submission

would understand completely why at the drop of a hat you might suddenly need to pivot from working on doing life administration and laundry to have my hair and make up done and be assisted with getting lighting and a zoom set up immediately to be live on television within five minutes. A person who could, if we were out in the community in my line of work and I needed to talk to someone who was up a flight stairs or on the other side of a crowded room, get through the crowd and bring the person to me.

• A huge barrier for me to be employed was to look neat and presentable as female because I had lost the capacity to lift my arms above my head and wash my hair. I discovered that the hair salon two buildings up from mine needed Hair handling apprentice practice for their apprentice and was able to spend my funding to have my hair washed and dried straight once a week. That straightening once a week it stays looking neat for all of those work meetings and media interviews.

• I was able to hire my cleaner of 26 years and expand her portfolio to include additional support work. There’s a lot of talk about getting only registered providers and I share a story of the support team to show you why they make me safer despite not coming from a disability support background. The Worker from a journalism background (with post-graduate degrees but no cert III) is a quick learner and was able to be provided with Training for all of the tasks she needs to do by people who are qualified in doing that and allowed to train her. The lady who had been cleaning in my house for years had gradually seen my ability to do things decline but understood my life inside out having been in my home while I was living it for so long. So it was faster to bring her up to speed again receiving manual handling training on how to use a hoist and how to do the Disability specific tasks than it was to introduce a new person to my whole life. She is now the person in charge of logistics for The Team such as in the unit complex if the visitor car parking is blocked by some form of construction involving the building I don’t even need to know about these issues because that Worker resolves a solution for all of the staff. We are matching specific tasks to the staff they are best suited to.

Social community participation has been in the headlines a lot. It’s not people having their haircuts paid for or just to go to the movies or have cups of coffee. It’s literally leaving the house. Imagine if you had to leave the house 50% less from October.

Let us not change the Ndis legislation again until the foundations for an accessible inclusive society have been laid.

Yes, let’s make the Ndis sustainable for future generations by

• Reforming the way the Ndis runs rather than Ndis legislation for cost savings with better outcomes

Submission 1735 - Supplementary Submission

• Implementing the royal commission recommendations all 200 of them. Start working out the logistical kins within the Ndis that are not making it work at an operational level, rather than focusing on the legislative level.
• Note to a recommendation from the Ndis review which clearly stated that all recommendations needed to be implemented together, they could not be cherry picked.

At the moment dismantling the Ndis and returning to State-based systems that no longer exist means it won’t be fit for purpose.

Kind regards,

Marayke Jonkers PLY