National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2029
To whom it may concern,
This letter is regarding the NDIS Future Generations Bill 2026.
As a mother to three children (ages 10,12,13) accessing the NDIS, I care deeply about this service and what it has provided my children over the years.
My first two children were diagnosed pre NDIS, and were only given capped funding to use in block funded areas. The lack of funds, or choice and control, is something I don’t want the NDIS to revert back to. In the first year alone, we had to use significant personal funds ($50k), to provide therapy on top of what the state and federal governments could provide.
We had less control or choice over which services our daughter could access, for respite and accessing the community. Now we can choose appropriate care for our daughter, to meet her high support needs in the safest way for her.
The NDIS has improved this for our children since its inception. We have been provided with more adequate funds to access therapies. It has also allowed us more choice and control over what services we access. This is vital for our daughter, who is non-verbal, incontinent and has self- injurious behaviors. The choice to self-manage my child’s funding has not been an easy one, it is a decision that was made out of necessity for my child to receive to most appropriate and safe care in relation to their high support needs. I have had more success with privately run organisations than registered providers in making sure my child has been kept safe. If this choice and control is taken away from us this would lead to harm for my child. My experience using registered providers did not ensure my child was safe, in fact it was the opposite. The registered providers used agency staff who had inadequate training or experience to care for my child. I have found a wonderful place now for my child, but they are not registered at the time of writing this letter. If I have no choice or control over who looks after my child, then I will have no choice but to keep my child at home, and have no support to break up the burden and stress of caring for a high support needs child with self injurious behavior. My other children will have no break either, the intense stress and trauma from witnessing your child hurt themselves in this way is soul destroying. The impact it has on the family is huge. If we don’t have supports to help us care for our child, our capacity to continue caring for them is diminished drastically.
The world is an overwhelming place for my daughter, and her care has to be managed to her individual needs. She cannot cope in group settings, and requires 1:1 support and supervision at all times. If her core support was only available in a group setting this would be totally inaccessible for her. The one size fits all approach has no business being involved in NDIS supports. It has to be individualized for the participant for it to have any benefit at all. This is why I object to the minister having the sweeping powers to specify blanket caps on funding for particular supports, including maximum funding, maximum intensity and maximum ratios for support workers to participants.
I also disagree with the changes in the bill which would deny a participant or plan nominee/parent to access support coordination to request a plan reassessment. We as parents are living day in and day out with extreme levels of physical and emotional stress. We don’t have the capacity or time to request these things on our own. It is extremely difficult to keep yourself up to date with the administrative aspects of navigating the NDIS. My support coordinator is a vital tool in understanding my daughters needs and knowing how to access the appropriate supports and facilitate the changes needed if current supports are lacking. They are the best person for this job.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2029
They help ease the pressure off parents who are trying to focus on supporting their loved ones through each day, by taking over these tasks. It’s difficult to get someone to take over your role as a carer, nobody cares for your child like you do as their parent. But if someone can take that task off your workload this can mean the difference of being able to keep going in your caring role, and your child remaining in the family home being cared for by their parents.
Imagine caring for your non verbal, incontinent child who has been hurting themselves and injuring themselves causing soft tissue injuries, bleeding and in a distressed state, then having to walk away from that child to try and understand the administrative process and then also complete necessary requests to have any hope of changes being made to support you? Where do you find the time or mental capacity to do this?
His is my lived experience with my child, and I was fortunate to have an amazing support coordinator to step in and assist me with this process. How can you make a blanket change to this process in the bill and apply it to everyone not having any understanding of what we are living with at home?
I would like to address the bill’s changes in relation to access and eligibility. I am concerned that the capacity assessments to be brought in by the government in 2028 will not be adequate or appropriate to fully capture a participant’s functional capacity. I am concerned about the language surrounding the changes, in particular the following statement “In a context that excludes the impact of the persons environmental and personal circumstances, as much as possible.”
If factors like home environment are no longer considered, in relation to a person’s functional capacity, this would not be a true reflection.
For my children, who all have access to the NDIS, but also have varying ranges of support needs, their home environment is a major part of why they need the type of supports they receive. In relation to us as parents this also plays a big part of what supports we need to continue caring for our children in our own home. We all live under one roof and we all experience each other’s challenges day in day out. Caring for our child with the highest support needs has a direct impact on what capacity we have to care for our other children. They are all directly affected by this. It concerns me that my other children may be seen as milder in their challenges or support needs, and therefore have funds cut. But how are we as parents of another child with extreme behavioral challenges and extremely high support needs expected to support and provide the extra needs of all our children as though we don’t have those issues? Each issue is not separate from each other. The whole family unit and family capacity needs to be taken into consideration when assessing functional capacity.
I don’t believe the government has given us the time to actually digest this bill, and they haven’t gone to any effort to make it easier to understand. I don’t think we have had enough time to voice our concerns. The use of advocacy websites such as CYDA and Team DSC, have been the only resources that I have found helpful in trying to decipher this bill. Also, the resources from Senator Jordan Steele-John have made things easier to understand. I have spent hours of my own precious time to write this submission, and only with the help from the above resources have I been able to do this. I imagine many of us cannot do this so I hope my voice is heard.
I want the committee to recommend this bill not be passed in its current form.
*please do not publish any identifying details to the public, I wish to remain anonymous to the public.