Submission 645
Submission about the new NDIS Bill
To Senate Community Affairs Legislation
Committee
From The Self Advocacy Resource Unit (SARU)
Date May 2026
Plain English version
About the Self Advocacy Resource Unit (SARU)
The SARU resources and supports Victorian Self Advocacy Groups run by and for people with an Intellectual Disability, Acquired Brain Injury and Complex Communication Access Needs.
Self Advocacy Groups are run by and for people with disability who have joined together to make sure they have the same rights, choices and opportunities as anyone else in the community.
SARU supports the operations of a working group called the NDIS Self Advocacy Working Group. Members of this Working Group are Self Advocates who represent different Self Advocacy Groups in Victoria. Working Group members work together to give advice to SARU and the NDIA about NDIS issues that are a priority to Self Advocates.
About this submission The NDIS Self Advocacy Working Group gave SARU advice to help make this submission. This submission also includes comments from individual members of Self Advocacy Organisations.
It includes comments from members of Brain Injury Matters and DeafBlind Victoria.
Brain Injury Matters is a self advocacy and community education organisation run by people with acquired brain injury in Victoria. DeafBlind Victoria is a self advocacy organisation run by and for DeafBlind people in Victoria.
Many members of these groups use the NDIS. They know what good support looks like. They also know what happens when support is not there.
A note on the submission process
“They are not including us, he (Minister Butler) should of come to self advocacy groups”
Submission 645
This Bill was developed and consulted on in a very short timeframe. Making a submission in this timeframe was not accessible or achievable for most Self Advocacy Groups and Organisations.
The Easy Read version of the Bill was only made available one week before submissions were due. In our view, it was written in biased language that did not meaningfully or accessibly inform people of the possible changes and impacts.
Most people SARU works with use Easy Read. The short timeframe, the complexity of the Bill, the delay in releasing the Easy Read version, and the quality of that material meant that many people with intellectual disability, acquired brain injury, and complex communication support needs were prevented from meaningfully engaging in the submission process.
This includes people who are DeafBlind, who often use Easy Read style materials in plain text format.
These are some of the people most likely to be harmed by this Bill. They are also the people who were most effectively prevented from saying so.
Because of these limitations, this submission was primarily written by SARU staff, with advice from the NDIS Self Advocacy Working Group.
Important message This submission is about our concerns with the new NDIS Bill.
It does not mean we agree with the Bill.
The NDIS is about people with disabilities lives. It is about our support, our rights, our safety, our health, our communication, our choice and control, and being part of the community.
People with disability must be part of all decisions about the NDIS.
Nothing about us without us.
Our main message We are worried that because of the Bill:
People with disability will lose support they need. People with disability’s physical and mental health will become very bad People with disability will not get the support they need to leave their home and be in the community. People with disability will have less choice and control People with disability will not be listened to or have their needs missed in assessments. People with disability will not get the help they need when their life changes. People with disability will become very isolated. People with disability’s human right’s and safety will be at risk People with disability will experience more abuse, violence, neglect and exploitation
Submission 645
We ask the Senate Committee to stop the Bill from going ahead in its current form.
The Government must slow down and listen to people with disability first.
- The timeline is not accessible “Because it is so quick we don’t have time to look at it properly”
The Bill is being rushed.
The Bill was introduced in May 2026. Submissions close on 29 May 2026.
This is not enough time.
Many people with disability need more time to read information, understand what the Bill means, talk with people they trust, get accessible information, meet with their self advocacy group, and write a response.
A member of Brain Injury Matters told SARU that the timeline is too rushed for people with acquired brain injury to understand the Bill and say how it will affect them.
This member said people with ABI should have time and support to lead this work themselves.
DeafBlind Victoria said DeafBlind people often need extra time to organise communication support, interpreters, support workers and transport.
When changes happen quickly, DeafBlind people are left out.
We ask If you do not stop the bill, do not rush the Bill - give people with disability lots more time.
- Information about the Bill is not accessible enough For many people, the way government shares information is not accessible.
Some people need information in Easy Read, plain English, Auslan, tactile Auslan, Braille, large print, audio, community languages, and accessible digital formats.
Accessible information must be ready at the start.
It is not fair to give people hard information and only a short time to respond.
Brain Injury Matters wrote its submission in Easy English because many self advocates need clear words, short sentences and simple layouts.
DeafBlind Victoria said many DeafBlind people do not get information about big NDIS changes because news, social media and government websites are often not accessible to them.
Submission 645
DeafBlind people were not able to attend recent protests about NDIS cuts because organising support takes more time and planning. This means DeafBlind people are being left out of the conversation.
The Easy Read version of the Bill was only made available one week before submissions were due. In our view, it was written in biased language that did not meaningfully or accessibly inform people of the possible changes and impacts.
We ask Make all information accessible before decisions are made. Make sure accessible versions are factual and not biased so people get the information they need Give people with disability the time they need to understand it and respond. Do not make decisions before people have had a real chance to speak up.
- Do not cut social and community support “I wont get to be part of my group without funding because some people have to get there with a worker.” We are very worried about cuts to social and community participation support. People with Intellectual Disability, ABI and complex communication support needs (like people who are DeafBlind) will be some of the people that are most harmed by these cuts.
This support is not extra. It helps people have a real life.
It helps people leave home, make and see friends, have relationships, go shopping, do live errands, go to appointments, be part of self advocacy groups and the disability rights community, use transport, learn skills, go to work, volunteer, join community events, speak up, and stay safe.
A Brain Injury Matters (BIM) member told us that for some of their members, BIM’s peer support groups are the only thing they get to do in the community each week.
Many members use their community support funding to pay for support to go to these groups. Without this support, many people will be stuck at home. They will become lonely or unsafe.
A DeafBlind Victoria (DBV) community leader told us that support to leave home is essential for DeafBlind people.
Without social and community participation funding, DeafBlind people will lose their jobs, be stuck at home, and not be able to see friends, get to appointments, attend DeafBlind events or take part in everyday life.
This DeafBlind community leader said cuts could mean he cannot keep working. It could also mean DeafBlind community events stop, because him and his fellow DeafBlind co-workers at DBV run them.
Family members often cannot provide this support. That is why NDIS support is needed.
Submission 645
Cuts will stop expert voices being included in co-design, advisory and leadership roles: Social and Community Participation funding is what supports many people with Intellectual Disability, Acquired Brain Injury or complex communication support needs (like people who are DeafBlind) to be in co-design, advisory or leadership roles. For example: Support to physically get to and from a committee meeting.
“Not everyone can go out to self advocacy groups by themselves, like some people who are blind and can’t walk by themselves.”
Cuts to this funding is dangerous because cuts will prevent many of the people that will be most harmed by this Bill from any ways to raise alarms about how this bill harms them.
We ask Do not cut community support for everyone. Look at what each person needs. Protect social and community participation support.
- The Bill could take people backwards “If the government does this, it will cause people with disabilities to be stressed, depressed, anxious, homeless, lonely and be at risk of domestic violence, it will make us more vulnerable”
The NDIS has helped many people live better lives.
For some DeafBlind people, life before the NDIS was very limited.
One DeafBlind person said that before the NDIS he had about 3 hours of support each fortnight. This was the only time he could leave the house. There was not enough to attend appointments or see friends.
With the NDIS, he got more regular support. He got to leave the house. He connected with the DeafBlind community. He saw friends. He got his first job. He is now a DeafBlind community leader.
This shows how important the NDIS is.
The NDIS can help people move from isolation into community, work, friendship and leadership.
Cuts could undo this progress.
Submission 645
We ask Do not take people backwards. Keep the supports that help people live ordinary lives.
- Assessments must be fair The Bill talks about new assessments.
Assessments must understand real life.
Some people need help to explain their needs.
Some people have good days and bad days.
Some people use different ways to communicate.
Some people feel scared in meetings.
Some people say they are okay when they are not okay.
Some people need someone they trust with them.
Brain Injury Matters said assessments must listen to the person.
Assessments must also listen to people the person trusts.
This is very important for people with intellectual disability, acquired brain injury and DeafBlind people.
DeafBlind people may need interpreters, communication guides or trusted people to help explain their needs.
Assessors need to understand DeafBlindness.
People with different identities or backgrounds need different kinds of support:
When deciding what people need in their plans, thinking about their identities and cultures is very important. For example:
Queer people who have an intellectual disability, acquired brain injury or who are DeafBlind are mostly isolated from the queer community and need funded supports to access this. Access to the queer community gives them safety, a sense of belonging, identity, relationships, community connection, culture and so much more.
First nations people who have an intellectual disability, acquired brain injury or who are DeafBlind are often isolated from their first nations community and need funded supports to access this. Access to their First Nations community gives them safety, a sense of belonging, identity, relationships, community connection, culture and so much more.
We ask No one should lose NDIS support because of an unfair assessment. Assessments must be accessible.
Submission 645
Assessments must listen to the person and the people they trust. Assessments must think about people’s with identities and cultures when deciding what supports someone needs.
- People need help when life changes “We get scared to go out in the community because of trauma and it will be worse if we are alone.”
Life can change quickly.
A person may need more support if their carer gets sick, they leave hospital, they move house, they are unsafe at home, their mental health gets worse, their provider stops helping them, they are experiencing domestic violence, they start a family, they start work, their communication needs change, or their health changes.
Brain Injury Matters said people should not have to wait too long for help when life changes.
DeafBlind Victoria gave an example of a DeafBlind person who needed more support after taking on work at two DeafBlind organisations.
The NDIS rejected his change of circumstances request and said he shouldn’t have taken on more work. He had to go to the Administrative Review Tribunal.
This is wrong.
People should not be punished for working, joining community, their life changing or trying to do more.
We ask Make sure people can get urgent plan changes when they need them. Do not make it harder for people to ask for more support when their life changes.
- Choice and control must stay “It should be up to us to decide not the minister because we are the ones with lived experience. The minister should listen and work with us. We are the ones living with a disability.”
The NDIS should let people choose.
People should be able to choose their workers, their providers, their support coordinator, their plan manager, and how they use their support.
Trust is very important.
Some people have worked hard to find workers they trust.
Submission 645
Brain Injury Matters said new rules must not take this away.
DeafBlind Victoria said this is very important for DeafBlind people.
There are only a small number of support coordinators who understand and work with DeafBlin Victoria members.
DeafBlind people need people they trust and people who understand their communication and support needs.
Queer people with disability often use LGBTIQA+ specific supports. This helps them stay safe, connect to their community and have their needs met. Queer people with disability must have the choice to do this.
We ask Keep real choice and control in the NDIS. Keep choice and control at the NDIS for supports from services that understand people’s disabilities. Keep choice and control at the NDIS for supports from services that are culturally safe and specific, like LGBTIQA+ disability services. Do not force people to use workers or services that do not understand them.
- Support coordination must not be replaced with generic support We are worried about replacing support coordinators with generic navigators.
Some people need specialist help to understand and use the NDIS.
This includes many people with intellectual disability, acquired brain injury and many DeafBlind people.
Support coordinators can help people understand their plan, find services, organise supports, solve problems, prepare for reviews, and speak up.
DeafBlind Victoria said DeafBlind people need support coordinators who understand and know how to work with the DeafBlind community. They said there are only a very small amount of Support Coordinators that know how to do this.
Generic navigators may not have the right skills or trust.
We ask Keep access to trusted and specialist support coordination. Any new navigator system must be designed with people with disability. It must include specialist knowledge of acquired brain injury, DeafBlindness, intellectual disability and other disabilities.
- The review system is already not accessible
Submission 645
“We won’t stop until you listen to us It’s taking our human rights away from us”
Many people already have trouble challenging NDIS decisions.
DeafBlind Victoria said the Administrative Review Tribunal process is not fair or accessible for many DeafBlind people.
One DeafBlind person asked for Auslan interpreters for a hearing, but they were not provided.
He also received legal documents only days before the hearing, without support to read or understand them.
This is not fair.
People cannot speak up properly if the system is not accessible.
We ask Fix the review system before making bigger changes. People must get interpreters, communication support, plain English documents, Easy Read documents, enough time to respond, and support from people they trust.
- DeafBlindness must be recognised properly DeafBlindness is its own disability.
It is not just deafness. It is not just blindness.
DeafBlind people have specific needs with communication, information, mobility, safety, transport, support workers and community access.
DeafBlind Victoria said the NDIS has recently changed to finally list DeafBlindness as a primary disability, but DeafBlindness looks different for every person, people often still don’t get the funding they need from their primary disability being listed as DeafBlind, Deaf or Blind.
For example: 1 person who’s DeafBlind might have no hearing and have a vision impairment. They still have enough vision to use Auslan, but if their primary disability is listed as Deafblind they don’t get enough Auslan interpreter funding. Because of this their primary disability is listed as Deaf, but this means they don’t get the supports they need for their vision impairment, as well as the supports they need for how this vision impairment interacts with their Deafness.
This means DeafBlind people may not get support that matches their real needs.
We ask Make sure DeafBlind people help design any new assessments and eligibility rules to make sure people’s needs are met.
- The Minister should not have too much power We are worried about giving too much power to the Minister.
Submission 645
If one person has power to turn funding on or off, people with disability cannot live or plan their lives.
DeafBlind Victoria said this could make people afraid to make choices, such as taking job opportunities, joining community events, becoming more independent, having kids or moving house.
People should not have to live in fear that support could be cut without proper checks.
We ask Limit the powers of the Minister. Make sure any big funding changes are public, fair, explained in plain English, checked by Parliament, open to review, and designed with people with disability.
- Automated decisions are risky We are worried about automated decision making.
Computer systems may not understand people real lives.
They may not understand Acquired Brain Injury.
They may not understand DeafBlindness.
They may not understand Intellectual Disability
They may not understand good days and bad days.
They may not understand communication support needs.
DeafBlind Victoria also said human planners can be traumatic when they do not understand DeafBlindness.
So the answer is not just computers or just people.
The answer is fair decisions made in ways that understand all disability, with strong rights to review.
We ask Do not use automated decisions unless there are strong safeguards. People must be able to understand and challenge decisions. Decision makers must have disability expertise. People with disability must have rights to review decisions that don’t meet their needs
- Advocacy must be funded If the NDIS changes, people will need more advocacy support, not less.
Brain Injury Matters said self advocacy groups help people understand changes, know their rights, speak up, make complaints, ask for reviews and stay connected.
This is also true for DeafBlind people.
Submission 645
DeafBlind Victoria said DeafBlind people are often left out of public conversations because information and events are not accessible.
Support from self advocacy groups is essential.
We ask Fund independent advocacy and self advocacy groups properly. Make sure people with disability can get support to speak up.
What we want the Senate Committee to do We ask the Senate Committee to make sure the Bill does not go ahead in its current form.
We ask the Senate Committee to protect choice and control.
We ask the Senate Committee to protect social and community support.
We ask the Senate Committee to make assessments fair.
We ask the Senate Committee to let people get urgent plan changes when life changes.
We ask the Senate Committee to protect the needs of DeafBlind people properly.
We ask the Senate Committee to protect the needs of people with acquired brain injury properly.
We ask the Senate Committee to protect the needs of people with an Intellectual Disability properly.
We ask the Senate Committee to fund advocacy and self advocacy.
We ask the Senate Committee to listen to people with disability before changes happen.
Final message The NDIS helps people with disability live our lives.
It helps us be part of the community.
It helps us work, learn, connect and speak up.
It helps us be safe.
Do not change the NDIS without us.
Listen to self advocates.
Protect our rights.
Signed: ________________________________
Name: ________________________________
Group: ________________________________