Securing the NDIS for Future Generations - Senate Submission
I fully understand the need to reform the NDIS but strongly disagree and oppose the legislation before parliament. I am grateful there has been more time given for review by the parliament and the community. I consider this bill as a backwards step in the social inclusion of people with all sorts of disabilities. Much is to be learnt from people like my son.
My interest and concern about this bill arises from the fact that I am the mother of a profoundly intellectually disabled 36-year-old man with co-existing conditions. I have cared for him for over 34 years with little to no support. I have also cared for my parents and my husband’s mother and more recently my daughter who passed away in June last year. My daughter had a complex history including physical health issues and a related diagnosis of anorexia nervosa. We, as a family, have been stretched to the limit. However, we have educated ourselves around the NDIS and the proposed changes, and the possible impact on our son and others. I am concerned, however there are many participants and their families who are not cognisant of the changes nor the adverse impact of them. This is because they have trust in the initial promise of the NDIS. Sadly, I am not feeling that way currently.
I have witnessed the blame game between the Federal and State governments for years now. Governments blaming providers, telling participants to change providers. Providers are not the enemy; they are the ones who truly support people to the best of their ability.
Disabled children were once awarded to the state at birth, raised in institutional settings and never seen by the public. This did not have a good outcome. We have progressed to a more inclusive society where people are treated with dignity and respect. I feel many of the changes in this bill are a backward step and a threat to the safety and well-being of disabled people.
There are no foundational supports currently in operation to support those that are removed from the scheme that I am aware of. Are these supports going to be adequate when they are instigated? I know, however that Thriving kids is in its infancy and should be providing support to some children soon.
My son moved into SIL accommodation with his friend a little over a year ago. This does not mean my commitment to him has ended. Now my concern is: will he be safe and well supported when I die? This was one of the original promises of the NDIS when it was first proposed. This should be a priority of any government.
My first concern relates to the slashing of budgets for social and community support (section 34a) for everyone. This will mean there is no funding for at least 3 hours a day for my son to be cared for as the SIL funding is already allocated to his care when he is in the house. This will also result in social isolation, an inability to get out and exercise and opportunities to be seen and heard will be very limited. This will lead to increased frustration and behavioural issues. Being out in the community also provides another set of eyes on the individual ensuring their safety. We are already seeing the agency insisting that people go out in a group. This is not safe for everyone due to the complex and differing needs of participants. I gather the Minister must make these decisions with the safety of the participant in mind. I think, if this goes ahead it has created huge risks for participants, albeit unintentional. The new Inclusive communities fund would not be able to assist my son as he needs support to go anywhere and do anything.
I am also concerned about the use of functional assessments and algorithms to decide people’s eligibility and budget. The WHODAS questionnaire, which is currently used, for example, asks a question “Can you walk a km?” Well yes, my son can, but he cannot navigate his environment without support. He is a very vulnerable individual who might sit down in the middle of road, walk out into traffic, is unable to speak so could not ask for help. It would be totally irresponsible to allow him to go anywhere without
support. This question does not capture that level of need. I find it almost impossible to think of any questionnaire or assessment that will capture the nuances of people’s needs. Using algorithms removes the human touch that is required when dealing with people with a disability. (section 32L)
The suggested power given to the Minister to cut or cap funding to certain groups of people or categories of support without consultation with parliament is highly concerning. (section 33 2 e a) and should not be allowed.
The fact that it will be almost impossible to request a review of an inadequate plan is leaving vulnerable people at serious risk (because of s48A of the Act, reassessment provisions and the changes to the definition of reviewable decisions in the Act). The agency currently spends millions of dollars fighting participants who are requesting support.
My son’s move into a group home with his friend would no longer be possible. This was because one of the boys received SIL funding and one did not. It took 4 years for both boys to be funded remembering we are 68 and 77 years of age. Request for review, appeals ongoing conversations and assessments were part of our lives for years.
The administrative costs of the scheme, the repeated requests for reports that are often unread, the misinformation given by the call centre (the inconsistency of knowledge of the people working at NDIS), and the lawyers’ fees, could all be areas where cost reduction could be made. A small example is, a call centre employee informed my plan manager that only self -managed participants can directly employ staff. This was because of an outdated document that the person at the call centre was using. They abruptly stopped reimbursing the money I paid a private support worker. Consequently, there were additional costs to the scheme as I had to find a plan manager who would do payroll at an approximate cost of $4,000 a year. Further, there were costs with my support coordinator and LAC assisting me, as well as an advocacy organisation and a gentleman from the NDIS. We had to change the plan manager before we were formally advised that the information provided was indeed incorrect as expenses were over $1,000 per week. Previously I had paid all super, tax etc at NO COST TO THE SCHEME.
I want to mention that the two organisations I deal with are of the highest calibre and really care about providing a quality service for their participants. I truly believe that most providers who have been around a while have the best interests of people and their families and do the best they can within the confines of their budget.
I implore you to not let the NDIS go backwards after the long, hard fight many families have faced to have their children out and about in the world and to be accepted as part of it. We will be seeing more tragedies like the Clune family and vulnerable people put at risk. Please do not allow this to happen.
At the very least there needs to be amendments to this bill and safety mechanisms in place to support people who are adversely affected by any of the legislated changes. We also need more information around the method of assessing someone’s level of function/need and its ties to a funding amount. We need a less bureaucratic scheme that shows a more human face and provides the care that people truly need. I believe this is achievable via other methods that will not reduce necessary supports and have significant adverse effects on the individual, their families, providers and associated systems of support.
Please do not allow Australia to go backwards. We are a good caring nation who truly want to help others who need it. The rhetoric around fraud and misuse of government funds has done great damage to all Australians, disabled or not. It has incorrectly focussed on removing supports from those that need it. Disability, illness can happen to anyone of us. No one should ever forget that.
My deceased daughter wrote my son Sam a beautiful card when she was living away in the country. It said “ I love you more than words could ever say. You have been the shining star who has made all of
us good people. Your smile, you’re giggly, you’re cheeky. YOU”RE EVERYTHING GOOD. And you will always be our number one Man, Sam the Man”
As I said before, we can all learn from each other. We all have value in this world. It is just that some of us need more help than others and no one should be punished for that or feel their life is reduced to a budget line item.
Jan Bertilone
8/07/2026