Community Affairs Legislation Committee for Inquiry - National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

10th July 2024

I write to provide comment to the Committee in relation to the NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. My submission to this committee relates to my experience as a parent/carer and guardian of a young adult with complex needs, and as the NDIS plan nominee for both of my children for the past nine years.

I am the parent and legal guardian of two young adults who are NDIS Participants. My eldest child is aged 25 and has a primary disability of autism (level 3) and moderate intellectual disability, with comorbid conditions of obsessive-compulsive disorder and ADHD. She has been supported by the NDIS since 2017, and now resides in supported accommodation with 24/7 supports funded under Supported Independent Living (SIL). She is what is termed a ‘Complex Services’ client, due to her high-level needs. She will require a high level of care for her whole life.

Our youngest child is aged 19, with a primary disability of autism (level 2) and comorbid conditions of anxiety disorder and ADHD. My husband is also autistic and has an acquired brain injury but is not an NDIS participant. I provide informal support to our family members on a daily basis, and I provide additional support to our NDIS providers, help to manage their supports as the Plan Nominee for both plans, manage the health services for our eldest child as her medical guardian, and assist in the management of her finances and bills. I also continue to run my own business. As you can imagine from this brief description, our lives are full, complex, and at times, very challenging.

I have specific concerns about this Bill, which are:

• Classifying participants: There is insufficient detail in the Bill regarding how participants will be classified, the mechanism by which they will classify participant primary disabilities, and how the Agency will deem reasonable and necessary budgets aligned to these classifications. There is no indication of how participants can seek to have this classification amended if they disagree with it, or if it is inaccurate. Additionally, I object in principle to the concept of participant classification, which is dehumanising and takes a medical model approach to disability, rather than the now accepted social model of disability. Categorising people into different impairments does not take a holistic view of humans. The reason that I started this submission by providing the list of disabilities and comorbidities that my children have is that this is the way that the NDIA intends to view my children – it is not the way that I see them. They are whole people who happen to live with disability and who require reasonable and necessary supports to live an ordinary life. Unfortunately, if this bill is enacted, our family members will become classified according to diagnostic categories against which some funding will be allocated, rather than who they are as people.
• Needs assessment/new assessment process: Linked to the classifications of participants and supports, there is insufficient information about who will assess the needs of participants, whether participants can review and respond to the assessment,

the qualifications of the assessors, and the mechanism by which the assessment is undertaken. If the needs assessment will be undertaken using a computerised/automated assessment tool, will there be transparency about how this tool has been created and validated? Our young people have already been assessed using internationally validated assessment tools through their diagnostic process, and further assessed for functional capacity (again, using internationally validated assessment tools) in order to be accepted for other levels of NDIS funding over the past couple of years. I can’t imagine that the Australian Government has the expertise to so quickly create any further assessment tools that can be validated for any other purpose except to reduce the expenditure of the NDIS and the allocation of reasonable and necessary supports for participants. There are no other accepted tools that they could possibly use to assess needs that are not already in use on an international level.

• Changes to eligibility: One of the goals of this legislation is to potentially restrict eligibility of potential participants or change the eligibility of existing participants by creating stricter definitions. Participants that currently access the NDIS did so because they were promised lifelong support for their permanent and lifelong disabilities. During the rollout, people with disability were actively encouraged to apply for and access the scheme. Now, the State funded supports for people with disability no longer exist and the rhetoric from the Government is that the scheme is unsustainable and people with disability are a burden on taxpayers. If participant eligibility changes, there needs to be something else in place to support people with disability who are no longer eligible for the NDIS – what will that be? There is no information to explain how participant eligibility will change, which disability cohorts will no longer be eligible, what will happen to those participants who are no longer eligible, and how they can appeal loss of eligibility.

• Potential to incur debts: There is a potential for the NDIA to raise a debt if the Agency believes the participant did not spend funds in accordance with their plan. This is proposed as a fraud prevention measure, however most rules are quite confusing and participants may rely on advice from others about what may be purchased. If the participant has used the service and the NDIA refuses to pay for that service on the basis that it is not in accordance with the plan, the participant may then owe a debt to the provider and there is no appeal right. If participants are plan or NDIA-managed, that should not be the responsibility of participants to determine whether the funds are spent in accordance with their plans. Moreover, the NDIA rules and guidelines change so often, and Agency staff often do not understand the rules themselves. A call to the NDIA helpline often results in different answers for the same question. Therefore, it should not be the responsibility of participants to understand and administer these payment rules.

• Registration of providers: I am in favour of this. I believe that provider registration will protect vulnerable participants like my eldest daughter and will ensure that all NDIS providers will meet minimum standards for qualifications and safety.

Thank you for the opportunity to provide my views on this Bill.

South Australia