National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 155
Dear Senate Community Affairs Legislation Committee,
I am writing to share my concerns about the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024.
My son has the cognitive capacity of a 2 year old. He is 20 years old and 6 foot tall. He has fine motor, cognitive, behaviour and communication difficulties. He self-harms (throws himself on the ground, including in public space, bites himself until he bleeds, bangs his head on hard surfaces), when emotionally dysregulated.
He has a strong desire to be part of a social group. It is also his basic human right to have regular social interaction and access to the wider community.
He needs a high level of support in order to do this.
I am very concerned about the proposed independent needs assessment and the lack of detail that will only be known later. There is no certainty that a qualified person will be the assessor or whether our own information will be allowed. It is especially concerning that there is no right of review of the assessment, only a request of a replacement that can be refused.
I feel that assessment detail is too important to leave to a later legislative instrument and I do not see how the bill should be approved without more certainty.
The assessment tool has not been described in the bill, yet the bill states it must be used. That detail is to come later. That is very worrying that it will be an inappropriate tool for my son, yet the tool will be used because the law will say it must be.
We have just gone through a yearlong AAT process where we had to prove AGAIN the severity of my son’s functional impairments. This protracted process has been a waste of time and taxpayer dollars. Not to mention the emotional and mental toll it has taken on me as his parent and advocate and the impact it has had on our little family. So, will we now have to go through the process of proving ourselves yet again if the legislation changes and independent assessments are required? His disability is life - long. That was the requirement of being accepted into the scheme in the first place. So much time and money has been wasted by us having to illustrate and justify his impairments and what support he requires to live an “ordinary life” over and over again.
With this new proposed NDIS legislative changes, I am concerned about the possibility of us not being able to appeal NDIA decisions. Last year, we went to the NDIA in crisis. My son had finished school, was months into his adult day program, and his behaviours of concern had escalated. We went to the NDIA in crisis, requesting and expecting
National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 155
further support as his needs and circumstances had changed. All these changes in behaviour were associated with his disability. Instead, the NDIA slashed his core funding by 2/3. And they reduced it by reducing the care ratio that they were willing to fund for his day program, activities and camps. He had his previously established 1:1 carer to participant support ratio reduced to 1:4. There was already years of ample evidence and further updated evidence provided to the NDIA to show how unsafe, inappropriate and detrimental such a decision was.
I am concerned that with the new proposed legislation that when such gross errors in judgement are made that we will have no recourse to have them corrected. Disability can affect any of us at any time in our lives. My son’s disability, his functional impairments, are the direct result of a brain injury caused by a brain infection which was caused by a virus. Really, all of us who are not directly affected are just one accident or illness away from it directly impacting ourselves or our loved ones. Disability has the potential to impact all of us. This need to be kept in mind, and a better job needs to be done in helping to support all of us.
Thank you very much for your consideration.
Regards,