Submission 2139

Please note I use speech to text and have an energy limiting disability. I will try my best to edit after voice to text however mistakes will inevitably be missed, please be kind and understand that as a disabled person I have had to give up a lot to even write this submission.

Section 34A — Minister can cut your plan (% off whole categories)

Cutting supports such as therapy and access to the community is horrendous. Each participant already had to show that they required that level of support and yet it is being cut by half for social and community. The fact that this amendment allows other areas to arbitrarily be cut whenever the government feels like it even makes it impossible for disabled people to budget their funding. Emergencies happen and there is no funding for this so many disabled people have to budget within mind that there will be one or more emergency that will occur within their funding period and when that keeps getting cut how do we attend things like funerals, weddings, Emergency Health appointments as well as preventative. Cutting my access to Therapies will reduce my ability to stay mobile and will in turn increase the cost to NDIS as I require more and more supports.

Disabled people frequently live in lower social economic areas and that makes us more prone to environmental emergency such as floating, fire, cyclones etc. We are often least able to make the most of emergency protocols such as evacuations centers.

Understandably many of our support workers are also at risk of any of the environmental emergency due to generally living in close proximity, this means we often cannot rely on support you may also need to be evacuating themselves and their families.

Currently I have enough funding to leave the house once a week on a weekday. I am severely disabled and can not leave the house without significant support.

At the moment I need to budget that support very carefully to be able to do even a fraction of the everyday things most people take for granted.

I already shop online for almost all of my needs. This means I cannot access cheaper products for example stores like Aldi or Op Shops. That is very hard on someone who is on a very low income.

Buying some items like shoes and bras online is very difficult. These are best done in person where you can be properly fitted. I try to keep my funded hours for the absolute Necessities while still being a member of my community.

Submission 2139

Like many disabled people, who have to budget their ability to leave the home I have a number of general health care requirements that have not currently been attending to due to budgeting supports. I need to get to the dentist and I require a new pair of glasses. But like many NDIS participants, who have to budget supports this has been on the back burner because I required some Emergency Health needs as a scam found a mass. All is good but that and took social and community funding to be able to attend the necessary appointments.

I have already cut out any medical appointments that are not absolutely necessary and can’t be done online. For example I do not attend breast cancer screening - I only have enough funding for the absolute Necessities and breast cancer screening is not an essential.

As a Christian I would love to be able to attend church on a weekly basis however that is not something that I have enough funding to do. Unfortunately I can’t even attend on Easter and Christmas because these are public holidays and the cost of doing so is astronomical and I am only funded for weekday support once a week.

One of the very few community events I attend on an annual basis is Sorry Day. One of my daughters dances for a local Aboriginal community service and usually dances on this day. I am unable to attend most of the community events but this one happens to be accessible and close enough that I am usually able to attend for part of the service. However I am unable to attend this year as I am already budgeting to be able to attend my niece’s wedding in August.

These cuts and decisions will make me even more isolated as cutting my budget by 50% means in the future no amount of budgeting is going to make it possible for me to attend things like Sorry day, Funerals or weddings. I will get no social or community interactions as all of those supports will go on the absolutely essential medical supports that I need. As a require support during these events and often have to leave before a service is finished it is not okay to expect informal supports to also be providing direct care and leaving early for events they would also like to attend - such as my niece’s wedding.

Submission 2139

My partner is already at significant risk of losing his job which is the major income for a family of five. He has been formally warned in the past that he has taken too much time off for attending appointments with our children or myself.

He has already taken a lower paying job that is closer to home to at least reduce the amount of time it takes away from his work day to attend the appointments, we are unable to attend online, such as taking my daughter who is not an NDIS participant to the local children’s hospital for her regular appointments with a specialised clinic (NB this child is not an NDIS participant and as such has no access to other funding sources to take her).

If these cuts go through and the ability to make more in the future we will be at significant risk of ending up on carers pension and disability support pension. We currently have a retirement plan that he is working towards and we are saving for. However we would have to abandon this and the idea of both being about to fund our own retirement meaning the government will be financially responsible for not only our health and my disability supports but also our day to day living costs.

Or our relationship will breakdown further (we have already had discussions with a lawyer about divorce) and I fully become the government’s responsibility. As a bed based person that would mean a nursing home for the next 35+ years. I cannot see how that is a good financial decision unless the plan is for disabled people like myself to die due to neglect (like Anne Marie Smith who was not receiving the level of care she required) or by suicide. People’s lives should be worth more than submarines.

Section 33(2EA) — Minister can cap any support, by cohort. If cap values sit in referenced documents, the Agency can update them without Parliament

As seen above these arbitrary cuts do not take into consideration personal circumstances. For example my child’s NDIS plan has a very small number of hours for speech pathology. These hours are barely enough to cover an aac assessment - and most definitely is not enough to implement the therapy needed to get her able to use that system effectively.

Cutting her speech pathology hours will mean that NDIS ends up paying for an aac system that may never be properly implemented and get the full benefit from.

Submission 2139

Cutting support services across the board to a child in the city and the child in a remote area does not evenly distribute the burden. There are significantly higher costs in providing supports to rural and remote communities. Cutting or capping supports disproportionately affects those that need it most.

It is not ok to cost shift to disabled people. It is not ok to have budgets that do not accurately reflect the money available for any particular support. If a budget is stated in writing then it should not be allowed to be changed without prior warning in writing

As seen above, I very carefully budget both my own and my child’s NDIS supports. I work hard to make sure there is both a therapy and for myself, a support work of budget to cover emergencies. If that funding is cut without me receiving that information in writing prior to the cut then how are disabled people meant to appropriately manage their budgets? How can support services provide services to participants not knowing what is actually in their budget and if they can or cannot afford those services?

This puts participants at significant risk of accruing personal debt for disability supports that should be covered under NDIS.

Section 34(1)(aa) — “directly arising”

Disabled people are people. We are not labels or impairments. We do not come in nice neat boxes. All of us have Co occurring disabilities as a result of our primary impairment. I do not know a single person with a physical disability who does not also have a level of corresponding psychological disability as a result of living in an ableist society and dealing with government agencies such as NDIS and health services Centrelink etc.

I do not know a single person with a psychological disability that does not also affect their physical health because they struggle to get to health appointments, exercise, eat well etc

Submission 2139

The idea that any organisation, including NDSI, could decide what one disability alone is causing is ridiculous. Disability affects all parts of our life regardless of which impairment category we are placed in.

It is already problematic in that services that would normally be funded through health or community are not funded once a participant is on NDIS.

For example as an NDIS participant, I’m unable to access the mobility allowance. The assumption is that if we met criteria for the mobility allowance NDIS would provide a transport allowance at the same rate. Unfortunately this is not true and many NDIS participants are told they are not eligible for a transport allowance even though they would be eligible for a mobility allowance. On top of that NDIS participants do not get a healthcare card where mobility allowance participants do. Meaning many NDIS participants are worse off.

This happens with community health provided supports such as physiotherapy or psychology. While this happened prior to NDIS with state-based services, all services a disabled person required were covered under the Disability Services so no child fell through the gaps. For example if an autistic child required physiotherapy such as due hypermobility or toe walking then they would get physiotherapy through state disability services - NDIS has erroneously decided that autism has no physical component (despite ample evidence to the contrary) and as such refuses to fund the physiotherapy children received under the old state-based services ( please note I was an Allied Health provider under the old state-based services and all children received occupational therapy, physiotherapy, speech pathology and psychology).

This puts NDIS participants at significant risk of not being able to access the the disability supports they require in order to maintain or slow degeneration from their disability. This will result in increased funding in NDSI, health and income supports over time, not less.

Section 50A — auto-renewal, unspent funds gone.

Wheelchair on order? Home mod not yet built? Stripping funding on renewal.

It is not uncommon for there to be a lengthy process in getting supports. Automatically taking that funding away means that items still in the process of being purchased could

Submission 2139

lose funding. This would require significant and lengthy battles to pay for items that are on order but funding got lost for.

This puts NDIS participants at significant risk of personal debt due to a computer system taking necessary funding away from them. We have all seen what that does to people in the past where debt was raised that they were unable to pay.

Section 48A — reassessment locked down

Many things can change in life can affect the amount of support it is able person requires.

The current amendments currently has no built in schedule of reassessment so ALL reassessments will be unscheduled. Not every 12 months, not even every 5 years. This makes it impossible to make plans fit the needs of the disabled person.

Effectively a child could start on a plan at 3 yrs old and still be on the exact same plan at 23 years without ever being granted a unscheduled reassessment;

even when they start school (that is foreseeable),

when they go to high school (that is foreseeable),

not when their disability starts to present differently because their hormones are going through puberty

Not when their needs change from early intervention to specific skill based needs (ie the skills needed to make a CV and answer questions in an interview).

Not when they start their first job (regardless of how much support is needed to facilitate this)

Not when they are expected to use public transport.

There many things that require quick changes of circumstances. The current 21 days is already too long for many changes of circumstances.

I had been requiring a piece of Assistive technology for a very long time however due to difficulties with getting the appropriate reports etc it had taken a number of years to finally get the reports to show I require that piece of assistive technology. I was going to

Submission 2139

have surgery and as a result would not be allowed to go home without that piece of Assistive technology in place. The hospital had a duty of care to make sure that where I was going was safe - it was not.

I did not require the Assistive technology due to the surgery but I couldn’t be sent home without it.

I rang NDIS to explain the situation and I was told this was not an urgent change of circumstances.

My decline was foreseeable, however I had not had a plan reviewed in the previous four years. So while The Decline was expected and I was given funding for the occupational therapy report they still did not deem it appropriate to be getting the piece of equipment in a timely manner.

I was fortunately able to pick up, at a significantly reduce cost a second-hand piece of equipment that meant I was at least able to come home from the hospital. Many can not do this. If not I would have been stuck in hospital for over 6 months as that is how long it took (and it was initially declined as the quote was now out of date).

There are changes happening with the way plans are administered on a regular basis (every year there are changes) but at the moment and many plans like my own have been rolled over for very many years. This means our plans do not have the right wording that is required to access some services even though the original intent was to allow us to access those services.

Another example of that is respite. Previously respite was not need to be written into our plans however this changed in October 2025 no one at NDIS nor my LAC was able to confirm whether or not I was able to use respite if it was not specifically stated in my plan that was a rollover/extended from a plan 7 years before (which will become the norm if this is legislated).

While it was foreseeable that I would need respite in the future especially in an emergency, it was not put in the plan as a stated support because 7 years prior it was

Submission 2139

not something I expected to need anytime soon and core funding could be used flexibly as required if there was an emergency.

I do not generally require respite and therefore it wasn’t something I thought I needed to update, until there was an emergency and my carer needed to be away and I could not be safely left with minimal to no supports. I ended up dehydrated and in a bad state. I was very grateful that my support worker was able to drop everything, including getting her husband to come home early from work to look after their children, which is beyond what should be expected of a support worker. I needed someone who knew me well and what to do because I was so unwell that I could not talk. I could not tell them what I drink or even that I was dehydrated where to find cups or mugs or water. I was so unwell I couldn’t even organised the supports. She was just worried about me and called in to check on me. I hate to think what would have happened otherwise.

3 months (ie approx 90 days) after I first asked I received a letter from NDIS stating I could use respite. My carer’s father isn’t likely to die again. There is a major family rift as a result of me needing my carer to return to care for me as I didn’t have access to respite. It was nearly worse to get this letter so late. So much could have been avoided if I had been answered within 21 days of my first enquiry (when we first knew he was very sick and may die over the coming months), before it descended into an emergency, before I nearly landed in hospital, before a rift was caused in the family (which now means we have even less access to informal support).

This will become the norm, and not the exception if plans are not scheduled for regular reassessment and disability people need to show significant unanticipated changes to make unscheduled reassessments. My disability, like many has progressed but slowly over that time and with no plan reviews was clearly no longer flit for supporting my needs adequately to keep me out of a dire situation.

90 days is too long and with no ability to move to ART after this, we know 90 days will often extend much longer just as my examples have shown.

This puts disabled people at significant risk of being stuck in abusive situations with either providers or with family or partners as 90 days is too long to get support changes. Disabled people are at twice the risk of their age peers of abuse (both genders) according to the Royal Commission.

Submission 2139

This also puts disabled people at significant risk of not being able to access the supports they require to transition through life stages that could be seen as “anticipated”. Not receiving the supports required at these changes in function or education or informed supports, leaves disabled people at significant risk for physical, emotional harm and potentially death. It also means that the NDIS may end up paying more for supports because the needed supports have not been provided in the timely manner resulting in higher support needs long term.

Section 40A / 30(1A) — suspension & revocation

I cannot understand why this is even being proposed.

David Harris.

David Harris died as a result of this policy in the past.

Changes were made because people like David Harris died.

I am one of very many NDIS participants who have been told by NDIS that they have been unable to contact us even though they have made reasonable attempts.

I am house bound (in part due to how low my social and community funding is) and have email as my preferred contact. So what constitutes a reasonable attempt?

I am unable to always answer the phone or get to a phone in time to answer it. As such I have made it clear with NDIS that they need to email me so that I know I have enough time to respond to them and will not miss the communication with them. However there can be a lot of emails that come in every single day. Sometimes NDIS emails do end up in junk email and as such are not seen.

Submission 2139

It is not ok to take a disabled person off the NDIS or suspend their NDIS funding just because NDIA is unable to contact them.

It is not ok for there not to be a very clear structure of what is required from ndia including in-person welfare checks.

Disabled people are allowed to travel both within the country and even overseas for upto 6 weeks without informing NDIS. It is reasonable to assume, like any person it might be difficult to get hold of someone while travelling, but especially a disabled person who might not have access to their normal supports or AT for communication.

There needed to be a minimum of 90 days of attempts to contact and at least 4 attempts to contact in person (and not all within work hours as disabled people can work jobs as do carers so may not be at home during work hours), as well as contact all current and previous (for last 12 months) providers to also attempt to contact. Something is wrong if a disabled person isn’t contactable and NDIA has a duty of care to not just cut off life saving supports. This person might be critically ill or dead - that might be why there is no answer at a welfare check.

There is a very real, and proven result that policies like these result in disabled people’s deaths.

Section 9B — new eligibility test from 2028

As a Disabled person who had to enter the scheme via proving both significant and permanent disability, I know how difficult it can be to prove both of these.

I had the privilege of in living in an area where I could access and the privilege of being able to afford the level of care required to prove my disability via being able to pay Medicare fee gaps and privately pay for my Therapies.

I lived to close enough to, and at the time was able to transport myself to those appointments.

Submission 2139

I had the organisational skills to be able to organize all of the appointments and paperwork required to prove my eligibility for significantly and permanently disabled.

I was only able to do that because I was able to access services.

For many significantly disabled people, they do have this level of privilege. They might not have access to either the financial, physical, or organisational skills to be able to organise the evidence required.

There is a common saying within the disability field “you need to be so disabled that you are unable to fill out the disability related paperwork be able to access disability services. If you can fill out the paperwork you are not disabled enough and if you can’t you don’t have access because you can’t fill out the paperwork.”

Submission 2139

Schedule 5 — Minister can change how the Act works for 12 months without Parliament

We still have transitional rules in place two years after we were told they were transitional.

Having a rule that basically allows the government to circumvent the law is dangerous.

Australia works by laws and any law that allows a government to work outside that law except for exceptional circumstances is problematic for all Australians.

Thanks