Submission 132

Concerns Regarding Mandatory Registration and Provider Models

Submission to the Senate Community Affairs Committee

NDIS Future Generations Bill 2026

I am writing on behalf of my son, redacted who is an NDIS participant living with severe and complex disabilities. redacted is 38 years old and lives in Perth, Western Australia. He resides in his own home and requires one-to-one support 24 hours a day, seven days a week, currently provided through a combination of informal and paid supports.

My name is redacted and I live in Attadale, Western Australia. I am mother and his appointed NDIS nominee.

redacted is unable to live independently or to safely access the community without support. He lives with severe intellectual disability and Ataxic Cerebral Palsy. He is at high risk of falls, has significant communication difficulties, presents with challenging behaviours, and has no awareness of danger or personal safety.

redacted is a much-loved member of our family. Ensuring his safety, wellbeing, and future support arrangements has been central to our long-term planning so that he can continue to live a meaningful, connected and valued life within the community. We are deeply concerned that the proposed NDIS reforms could undermine these carefully established arrangements and place redacted at significantly greater risk in the future.

Cuts to Community Participation Supports

The proposed 50% reduction to Social and Community Participation funding fails to recognise the needs of participants who require one-to-one support both within their home and when accessing the community.

Group-based supports are not suitable for everyone. While redacted enjoys social interaction in group settings, no group program is able to safely support him without additional one-to-one assistance due to his high support needs.

Submission 132

In addition to structured activities with peers, accesses a range of ordinary community activities that are essential to his wellbeing and development. These include visiting the local barber, his Doctor, the library, attending the gym, walking within the community, and meeting friends for bowling. These activities are not recreational luxuries. They are critical supports that help maintain physical strength, regulate behaviours, build social skills, increase community acceptance, and develop meaningful relationships.

Without ongoing Community Access supports, mental health and emotional wellbeing will deteriorate significantly. He experiences heightened anxiety, frustration, and distress when isolated, and his behaviours of concern escalate. We know this from direct experience during the COVID lockdown periods, when redacted became depressed, severely dysregulated, and experienced more frequent violent episodes due to the loss of routine and community connection.

If Social and Community Participation funding is reduced, there will inevitably be increased requests for reassessment of Daily Living supports. In case, Daily Living funding would need to increase substantially to ensure he remains safe within his current living arrangements. The proposal suggesting participants use Daily Living funding to cover Social and Community Participation supports does not reflect the reality for people with complex support needs. Every dollar of current Daily Living funding is already fully utilised to meet his essential care and safety requirements. There is no excess funding available to redirect.

If Daily Living funding is not increased to offset these reductions, the burden of care will fall even more heavily on me as his primary informal support. This will increase family exhaustion, carer isolation and burnout, and will ultimately create greater risk of crisis situations for both redacted and our family.

Registration requirements for those receiving personal care in home and those who self-direct employees.

The wrong registration model will create new and significant risks for many NDIS participants. The safest and most effective model is one that preserves trusted relationships and recognises participant choice and control as essential safeguards.

Many self-managers, and those who self-direct their supports, have intentionally moved away from large provider organisations because of the very real risks these models can create for vulnerable participants. Personal care and the provision of 24- hour support within a participant’s home is highly intimate and requires deep understanding, consistency, and trust.

Submission 132

Our carefully established team of support workers know well. They understand his routines, communication methods, personal preferences, triggers, and the strategies required to safely manage and reduce periods of dysregulation. Building and maintaining this team has taken many years and has been essential in ensuring redacted remains as safe, stable, and connected as possible within both his home and the broader community.

When we have used registered providers in the past, we have experienced significant issues including:

• staff failing to attend scheduled shifts,
• high staff turnover,
• workers with inadequate training in redacted complex support needs,
• staff who were unable to understand his communication and therefore unable to respond appropriately to his needs.
• staff with no direct relationship with redacted and/or the family and therefore not invested in quality outcomes.

For people with severe disabilities and complex behaviours, relationship-based supports are critical. Constant changes in support staff create distress, instability, and increased risk. In redacted case, the use of large provider models, who have been proven to be unable to provide consistent and trusted relationships, would increase both physical and emotional risk and could have catastrophic consequences.

His trusted and consistent supports are fundamental to redacted remaining well regulated, safe, and able to participate meaningfully in community life. I am deeply concerned that these reforms will move redacted away from the meaningful and connected life he currently has and instead towards a life that is isolated, restricted, and crisis-driven.

Over many years, our family has carefully built safeguards around redacted to ensure his care arrangements genuinely meet his needs while preserving his dignity, safety, and quality of life. Dismantling the support model currently in place will not improve outcomes for redacted and will instead place him at far greater risk. The increased cost of using Registered Providers will result in redacted requiring a higher plan amount to meet the same current outcomes.

Submission 132

Requests for Consideration

Before making lifelong changes to the NDIS, I respectfully ask that the Government:

• Reject proposals that significantly reduce Social and Community Participation supports.

• Protect self-management and the direct employment of support workers.

• Ensure participants are not forced into provider models that are unsuitable for their needs and which may negatively impact both participant wellbeing and long-term funding requirements.

• Recognise the complexity involved in supporting people with severe disabilities and behaviours of concern.

• Ensure participants and nominees retain clear rights of review and appeal regarding decisions that affect their supports, safety, and quality of life.

Regards,

19/5/26