Submission 1575
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Submissions:
In relation to the proposed bill to be passed which will see social and community participation funds automatically reduced by 50%
I would like to not only provide feedback from lived experience but start by warning that this WILL cost lives. There will be suicides as a result of the social isolation that it will cause.
Secondly, I believe automatic cutbacks are a direct violation of Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD) which states:
“States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that: a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement; b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.”
I speak from personal experience – I have had 17 hours of social and community participation removed off my plan since 2021 – I believe mistakenly BUT it’s given me an insight into how the proposed changes will impact people with disabilities.
I have a severe physical disability- stage 4 Ankylosing Spondylitis with permanent postural changes that make walking difficult and painful. I am also classified as a high falls risk and have a history of falls. It is a high probability that a fall could result in spinal cord injury, this risk should not be minimised. Due to spinal immobility, I am unable to wipe myself after a bowel movement and rely on a NDIS funded bidet to assist when at home but when in public I rely on personal care from support workers.
In 2021 I had 22 hours of social and community participation per week in my plan. I also had 5 inactive overnight supports per month to use flexes Jess B by. I was able to attend movies, go for a walk at the river, I attended QPAC for live theatre shows; I was able to do activities that brought me joy and included me in my community. I had good long-term friends (Liz and Tim and their three children) who visited QLD from Perth in September 2023 and due to having the reasonable and necessary supports in my plan I was able to travel from my home on the Sunshine Coast to stay at the Gold Coast at meet my friends. This is how NDIS should work at its best. As I was away from my home and NDIS funded bidet I was fully reliant on the personal care from my support worker. I am reliant on an electric wheelchair and in 2021 I had an electric wheelchair from the QLD government MASS system. I had 22 hours of social and community participation In my plan as of 11th October 2021. I was initially approved car modifications that could carry me as a passenger in my wheelchair
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along with the 22hours of social and community participation it gave me a good quality of life – the same as a person without disability
My OT assisted me in applying for a wheelchair which was funded on the 15th June 2022 – the all terrain magic v6 wheelchair had the ability to climb kerbs that my state funded wheelchair couldn’t- from this aspect it gave me increased access to my community BUT never did it make me independent of the need of support whilst in the community. The same planner that approved my wheelchair removed 12 hours of commuting access off my plan - I went from 22 hours a week to only 10hours a week. I spoke with her at the time and she stated she would “never have approved the wheelchair if it didn’t reduce costs elsewhere in my plan” I explained to her how I was grateful I had a modified vehicle and grateful for a wheelchair which gave me increased access to my community BUT in taking 12hours of commuting access off my plan she was taking away the support I needed to use my AT; I am unable to load and unload my wheelchair and I rely on my support workers to drive my vehicle as well as provide me personal care while in the community
My disability has progressed as expected and in 2023 I had to move from a standard Department of Housing QLD property to wheelchair accessible property with disability accessible bathroom. I voluntarily surrendered my license as it has become increasingly difficult to move my neck for shoulder checks to safely drive. Around this time during a discussion with a delegate where I was explaining my struggle to manage with such little daily assistance (it’s well known that people with Ankylosing Spondylitis can experience 30mins – 3hrs of morning pain and stiffness on waking) I also have both bladder and bowel incontinence and unable to wipe after a bowel motion. Due to this discussion the delegate increased my Assistance with Daily Living from 2hrs to 4hrs per day to enable me to have two showers per day if needed and potentially create 2 daily assistance care shifts per day
At the same time that my disability progressed and I had an increase of daily assistance in my plan, my social and community assistance funding was further refused from 10hours per week to only 5 hours per week and the 5 inactive sleepover supports per month I had to use flexibly was also removed or left off my plan. The effect of removing the overnight support off my plan is essentially isolating me from the community. The support I had overnight to be away from home such as what I used in 2023 to meet Liz and Tim at the Gold Coast meant that when I opened my bowels at 9:00pm at night I wasn’t left to sit with faeces stuck to me until my “day shift” began. It meant that whilst away from my bidet at home I had the personal care that I needed when I needed and wasn’t limited to hoping my bowels would open within 5 hours of care per day I otherwise have when I’m at home. Even more distressing is when the Agency through lawyers representing them changed my entire plan to Agency managed due to using support that wasn’t funded in my plan (the overnight support) as I had travelled from the Sunshine Coast to the Gold Coast to meet two cousins who had travelled from Perth to the Gold Coast. If I don’t have and can’t use overnight support it is enforcing me to not travel away from my home where the bidet is, or rather isolating me from being included in the community. The question is how long does the NDIS think it’s okay to leave me sit in my own faeces due to lack of 24/7 support? I feel the answer is I shouldn’t be forced to sit in faeces for any length in time therefore when travelling away from home to
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meet family and friends that have come from interstate I need access to 24/7 care. If I have a bowel movement at 10:00pm I have the personal care I need, if I open my bowels at 7am I’m not waiting until 9am for a support worker to begin a shift to receive personal care. It’s not until you experience the feeling of having faeces dried on you and you’re waiting for a support worker to begin their shift that you can understand and appreciate how much it means to have adequate support and how “worthless” and “degraded” you feel when NDIS fail to provide the basics you need to be hygienically clean.
As well as lack of overnight support on my plan which removed my ability to meet family or close friends on the Gold Coast when they I have lost a total of 17hours of social and community access per week off my plan. Down from 22hours to only 5hours a week. At my last plan reassessment on November in response to a request for an increase in my social and community participation the planner stated “Community, social and civic activities from Assistance with social, economic and community participation has not been included in this plan.” This is because:
- we will only fund a support if it meets all of the NDIS funding criteria. The information you gave us does not show this support meets the NDIS funding criteria of being value for money. This means there are different supports that are better value for money because they can give you the same or better outcomes.” This is despite the fact I’m studying 20yrs a week, that I’m volunteering, would like to attend church and evidence my faith, and belonging to a church has always been an important aspect of my life, and that I have a mother living in an aged care facility that relies on me visiting her.
I have been left with a total of 5hrs a week for social and community access per week down from 22 hours a week in 2021. A delegate removed 12 hours a week off my plan on the 15th June 2022 when they approved funding for a wheelchair
During this same time my disability has progressed and I had to move to a specific disability accessible house, and surrender my license due to my disability
Further the Agency has funded a total of $60,000 in AT on me to “enhance my access to the community” - $33,000 in car modifications to carry me as a passenger in my vehicle and $27,000 in wheelchair funding but immediately removed the very supports I needed to use my AT – 12 hours of funded support worker time at the same time as funding my wheelchair in 2022.
It is completely illogical to fund $60,000 in AT to assist someone to access the community but remove the support workers they rely on to load and unload them in their wheelchair, drive the vehicle and provide personal care whilst in the community. Dreams of being able to attend the zoo, go for a walk at the river, be able to visit my elderly mother with dementia. The agency haven’t even factored in the time it takes to load and unload my wheelchair.
5 hours a week for someone who cannot drive due to their disability and requires a support worker to assist with loading and unloading their wheelchair and provide support whilst in the community is woefully inadequate considering monthly GP appointments, attending the pharmacy, specialist appointments, podiatry, pedorthist, physiotherapy, hydrotherapy,
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shopping, banking etc. When requested reinstatement of the social and community access has been denied and I have been advised numerous times that “core funding is flexible” – this means they expect I use the 4 hours of daily assistance per day to support my need to access the community. In reality this means to choose between a shower and attending the GP, or forgoing meal preparation for attending physio or hydrotherapy.
The loss of these hours in reality means I can no longer make it to Brisbane for a show at QPAC, I cannot meet family or friends if they travel interstate to the Gold Coast theme parks, I’m unable to go to the movies or attend markets or music events and fetes. The things that mean I am being included in my community as described by the CRPD. I do not have the supports in my plan maintain my meaningful relationships with family in Perth which causes me high amounts of distress.
To be honest the last 4yrs have broken me. I do not get the opportunity to use the modified vehicle and wheelchair which is such a waste of $60,000 of funding. I do not view that I have any quality in my life and aside from attending my basic appointments related to my disability there is no funded hours to be included in my local community.
Now here’s my warning to the senate and the Government, I am resilient and strong and face life with a positive attitude, but the removal of the hours wore me down significantly, I have had to accept (sadly) a lesser quality of life as my pleas with NDIS are ignored by those in positions of power – usually able bodied people and people without disabilities who are clocking off to go away for a weekend, or out to dinner with friends. People with no understanding of how their decisions are impacting my life negatively.
I am here to tell my experience BUT if you speak to my family and friends they will tell you, Bec is able to advocate for herself, Bec is strong and resilient, if this experience has worn me down and taken away my quality of life, what will this do to others less capable of being able to advocate for themselves, what will happen for those less resilient than I? Those who feel fragile? I fear many people who fit this category simply won’t cope with the isolation they will face. The Government is “playing with people’s lives” the automatic removal of 50% or more of people’s funding to access their community will isolate the most vulnerable people
This is the next “robodebt” – a systemic government catastrophe about to unravel that directly cost lives. There WILL be suicides if this legislation is passed and the government begins to restrict participant’s plans in the manner proposed.
The Governmen’s campaign on this has created an “us” and “them” divide not that different to apartheid only instead of race there is an undertone of resentment and hatred towards people with disabilities
There are many other cost savings the Government could consider:
- Mandating all support workers to be registered , aside from ensuring minimum standards across all support workers (I am aware of multiple private support workers that do not hold minimum qualifications or maintain the NDIS mandatory modules) – doing this would ensure all support workers are paying their superannuation payments
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for their future care and paying their taxes. I know three private support workers who owe an average of $20,000 tax each and unlikely contributing to their superannuation.
- A return equipment scheme where equipment can be refurbished and reallocated to participants who qualify for a wheelchair, bed etc
- Capping the cost of reports – how is it equitable if my OT has 10years experience and can write a report in 5 hours and another participant’s OT has 12months experience and takes 12 hours to write a similar report. If reports were capped to a maximum of 6hrs it would prevent excessive charges
- Create participant profiles with checklists of reasonable and necessary supports funded and stop making us continually get reports and justify the same supports plan after plan. I have been on the NDIS since it rolled out in my area in 2019 and since before I was on the NDIS I have required custom orthotics and medical grade footwear, test somehow these were left off my most recent plan, an internal review decided finding custom orthotics and medical grade footwear was did not meet value for money or beneficial criteria and denied those supports. After a series of complaints an escalations planner did a plan variation to include the funding for the custom orthotics and medical grade footwear. By now the Agency should have a tick list of items I need funded in any plan as a result of my disability and the plan should not be able to implemented without those supports included I urge the senate to not pass this legislation- give some assurance back to the disability community that their plans are safe and re look at other cost saving measures to implement Regards,