Submission 2591

Securing the NDIS for Future Generations Bill Submission

I have a 29-year-old son who is a NDIS recipient. My son has severe, non-verbal autism and intellectual disability and requires 24/7 support to keep him and those who care for him safe. He struggles with change of any kind, which leads to emotional dysregulation and behaviours of concern that put him, his carers, and others in the community at risk. He lives as a sole resident (necessarily, due to his behaviours of concern) in a robust SDA house that was designed to meet his needs. I am his legal guardian and administrator. I am alarmed that some components of the Future Generations Bill will put my son in danger and undermine what has been achieved through careful administration of the supports necessary to manage his life.

Section 34a of the Bill proposes that the Minister can, by legislative instrument, apply flat rate cut to plans with no review option. One such cut has already been scheduled to be phased in as from 1st October 2026, i.e. to cut 50% from Community Participation budgets. That would amount to cutting 13.2% from my son’s Core funding, leaving him without support for 21.5 hours per week, i.e. for more than 3 hours per day.

My son’s functional capacity—his ability to live safely without support—is limited to that of an infant (communication and social skills) or young child (personal care and daily living skills) as evidenced by the professional reports that have been provided to the NDIS that facilitated the 24/7 support that he’s required. If he were left unattended for three hours per day, the risk of injury, self-injury, absconding (with no sense of road-safety when stressed) or property damage is high.

My husband and I are aging and have complex health problems. SIL has been set up to secure a safe future for my son when we are no longer able to provide informal supports, and inevitably, when we die. Even before he left our family home, the physical risk of harm to my husband and I due to my son’s behaviours of concern was extreme. Therefore, our capacity for providing informal support is limited.

A good life for my son—as regulated, and meaningful as it can be with his severe disability—has been achieved with funding provided by the NDIS. For this, we are extremely grateful. It has included the following types of Community Participation:

• attending the gym to maintain health and fitness
• bush-walking for fitness
• collecting 10c recycle bottles from local businesses and neighbours and delivering them to the recycle depot to raise money for the RSPCA (his service to the community)
• attending family gatherings and special occasions

A meaningful life involves more than personal care, household duties, meals, and gardening. It is derived from relationship, connection, and belonging, things that my son has zero capacity to achieve independently, but which he has been able to achieve to some degree with support provided by the NDIS.

Submission 2591

Community par5cipa5on is not a luxury—being known in one’s community, developing connec5ons with informal support networks, maintaining rela5onships with family, maintaining mental health through engagement in meaningful ac5vi5es—provides a safety net for people with disabili5es and ul5mately may reduce the burden carried by paid supporters and other government funding health-related agencies.

To withdraw those reasonable and necessary supports by leaving him without care, unsafe for three hours a day, is not even an op5on. Safeguards must be in place to ensure that funds cut from Community Par5picipa5on are replaced with Core funds that maintain 24/7 support where this is required. Wherever my son may be—at home or in the community— his and those around him will not be safe without support.

No op$ion to review rate cuts to plans. My experience over the past eight years has been that NDIS planners some5mes make inadvertent administra5ve errors, such as in my son’s case, overlooking past evidence-based decisions, typographic errors that radically alter the amount or distribu5on of funds, and entering out-of-date, misleading informa5on that does not reflect the par5cipant’s current circumstances even when the correct informa5on has been provided. Despite the op5on to review, such errors were either not corrected or required months of wai5ng for the review process to take place, requiring that I advocate a second 5me for what had already been granted and then withdrawn due to a mere administra5ive oversight. Making the review process even harder, longer, or not available at all will only result in situa5ons that put par5cipants at risk.

I request, therefore, that flat cuts to any aspects of Core funding—with no review op5on— should not be applied across the board, but that the func5onal capacity of individuals should be taken into account. Rate-cut decisions should be reviewable, especially when safety is at risk, and a “Change of Circumstance” request should be responded to within 21 days.

Sec$ion 34:1aa of the Bill proposes that only issues arising directly from a par5cipant’s eligible qualifying impairment can be funded by the NDIS. This proposal overlooks the fact that the comorbidity of mul5ple condi5ons, some of which may fluctuate, can profoundly affect how well an individual copes. They cannot be easily untangled in terms of their impact.

For example, the primary condi5ons of severe non-verbal au*sm with intellectual disability (the eligible qualifying impairments in my son’s case) are exacerbated by another life-long condi5on, Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS), which occurs whenever he has a mouth injury or ulcer—due to his au5sm-driven ea5ng rituals—that expose his auto-immune brain to strep bacteria. My son has PANDAS flares many 5mes every year that result in extreme obsessive-compulsive behaviours, extremely narrow window of tolerance for change, movement disorders, vocal 5cs, and agita5on, all of which make his life (with au5sm and intellectual disability) more difficult, increasing his level of impairment every 5me a flare occurs.

Comorbidi5es should therefore be considered with regard to func5onal capacity when determining funding for individuals. To ignore these complexi5es is to consider the person as

Submission 2591

• a list of disorders on paper, rather than as a human being dealing with mul5ple assaults to their func5nal well-being.

I appreciate the need to implement changes to the NDIS to ensure its viability for future genera5ons. However, I respeckully request that you consider the impact of the sec5ons of the Bill that I’ve referred to, and adjust the proposals to provide more flexible and individualised controls.