Submission 3152 — Name Withheld — NDIS Future Generations Bill

To Whom It May Concern,

We write this submission as parents, carers, and independent support workers. Our family lives the reality of disability and support every single day, and we wish to express our deep concerns regarding the proposed NDIS reforms and the likely impact these changes will have on participants, families, carers, providers, and the broader community.

While we understand the importance of ensuring the sustainability and integrity of the NDIS, we are deeply concerned that many of the proposed changes risk shifting the scheme away from its original purpose — enabling people with disability to live meaningful, safe, connected, productive, and dignified lives with appropriate support.

For families like ours and the clients we support, the NDIS is not a luxury. It is the difference between stability and crisis.

Our son and our clients are not simply service users. They are people with goals, emotions, identities, friendships, aspirations, and a desire to participate in the world around them. The supports they receive enable them to access their communities safely, build skills, eat and drink safely, maintain emotional regulation, develop independence, attend appointments, go to the shops, participate in activities, maintain relationships, have their personal needs taken care of, take their medications, go to work and experience a quality of life that many Australians take for granted.

Without adequate supports, the consequences are severe and far-reaching.

The proposed reforms appear to place significant emphasis on reducing costs, tightening access, and narrowing interpretations of what is considered “reasonable and necessary”. While accountability is important, we fear these reforms do not adequately recognise the complexity of supporting individuals with intellectual disabilities, behavioural challenges, trauma backgrounds, communication difficulties, psychosocial disabilities, and high support needs.

For our family, supports are not optional extras. Prior to accessing NDIS funding, our lives were dominated by crisis, stress, and uncertainty. The support we now receive helps prevent burnout, strengthens our family unit, and provides our son with opportunities to develop independence and live his own life as an individual.

Support workers are often the reason people with disability can safely engage in the community. They provide supervision, emotional regulation support, behavioural support implementation, transport, social connection, life skills development, and crisis prevention. Reductions or restrictions to supports may appear financially beneficial on paper, but in reality they simply transfer costs elsewhere — to exhausted families, hospitals, mental health services, schools, emergency services, and the justice system.

As independent support workers ourselves, we witness the value of these supports every day. We have built our small business around lived experience, providing personalised, flexible, and high-quality support to people who often struggle to find consistent workers who genuinely understand their needs.

A critical strength of independent support work is continuity. Many participants, particularly those with autism, psychosocial disabilities, trauma backgrounds, communication challenges, and complex behavioural support needs, rely heavily on trusted relationships with the people who support them. These relationships are often developed over months or years and form the foundation for successful support outcomes.

When a participant loses a trusted support worker, the impact can be significant including increased anxiety, emotional dysregulation, behavioural escalation, withdrawal from community participation, loss of confidence, and setbacks in skill development. Families are often left to manage the consequences while new support workers attempt to rebuild trust and understanding from the beginning.

We are particularly concerned that proposals requiring mandatory registration for all providers may have unintended consequences for small independent providers and the participants who rely on them. While quality and safeguarding measures are important, increased registration costs, audit expenses, insurance requirements, compliance obligations, reporting demands, and administrative workloads may become unsustainable for many sole traders and small businesses.

Unlike larger organisations with dedicated compliance departments, independent providers often manage these responsibilities themselves while continuing to deliver direct support. Every additional hour spent on paperwork, audits, reporting, and compliance is an hour no longer available to participants.

These changes risk reducing the number of experienced independent support workers operating within the sector, limiting participant choice and control, increasing workforce shortages, and reducing access to the flexible, relationship-based supports many participants prefer. They may also lead to the loss of trusted long-term support relationships that are essential to participant wellbeing, stability, and progress.

Ultimately, increased compliance costs are likely to be passed on through higher service costs, creating additional pressure on both participants and the Scheme itself. Any reforms that inadvertently reduce the availability of experienced frontline support workers risk creating greater costs in the long term through increased crises, family breakdown, hospital presentations, mental health interventions, and higher-intensity support requirements.

The long-term cost of inadequate support will far exceed any short-term savings.

Families caring for individuals with complex needs already experience significant burnout, financial strain, emotional exhaustion, relationship breakdown, social isolation, and mental health impacts. Many carers sacrifice careers, financial security, sleep, stability, and their own wellbeing to keep their loved ones safe.

Like many families, we have had to restructure our entire lives. Mainstream employment became increasingly difficult to sustain alongside our caring responsibilities. We have taken our lived experience and used it to provide a level of care and understanding that our clients regularly tell us is invaluable.

These reforms risk pushing families beyond breaking point.

We are particularly concerned about:

• Reduced flexibility in how supports can be used.

• Narrower interpretations of disability-related supports.

• Increased administrative burden on participants, carers, and providers.

• Delays in accessing funding, approvals, and essential supports.

• Restrictions that reduce community access, social participation, respite opportunities, and pathways to independence and employment.

• Increased scrutiny that creates fear and uncertainty for participants and providers genuinely trying to do the right thing.

• Mandatory registration requirements that may force experienced independent providers out of the sector.

• Reduced participant choice and control through a shrinking support workforce.

• Changes that may disproportionately impact young people transitioning into adulthood who require intensive support to build independence and avoid long term institutionalisation.

Meaningful lives cannot be measured solely through cost containment or administrative efficiency.

The NDIS was intended to support inclusion, participation, dignity, choice, independence, and the ability for people with disability to contribute meaningfully to society. For many participants, this includes being able to participate in activities, build friendships, learn daily living skills, engage safely in the community, pursue goals, and develop pathways toward productive and fulfilling lives.

When supports are reduced, people do not suddenly become less disabled. Instead, families absorb the impact behind closed doors. We have already seen the devastating consequences that can occur when vulnerable individuals and families do not receive the support they need.

The voices of people with disability, carers, families, and frontline providers must be genuinely heard throughout this reform process.

We speak from lived experience — from sleepless nights, crisis management, advocacy fatigue, appointments, behavioural incidents, emotional exhaustion, and years spent fighting for appropriate support for our child.

We urge the Government to ensure reforms:

• Preserve participant choice and control.

• Protect funding flexibility for complex support needs.

• Recognise the essential role of respite and carer sustainability.

• Maintain funding for community participation, employment pathways, micro- business opportunities, skill development, and meaningful productive engagement.

• Avoid overly restrictive interpretations of supports.

• Reduce administrative complexity rather than increase it.

• Ensure compliance requirements remain proportionate and do not unintentionally eliminate small independent providers.

• Engage meaningfully with participants, carers, families, and frontline providers before implementing significant changes.

The success of the NDIS should not be measured solely by reduced expenditure. It should be measured by whether people with disability are safer, more included, more independent, more connected, and able to live lives with dignity, purpose, and meaning.

Our people with disability deserve that opportunity.

Families like ours deserve the ability to continue caring without being pushed into crisis, and small independent providers deserve the opportunity to continue delivering the personalised supports that participants actively choose and value.

We ask that the Government carefully reconsider reforms that may unintentionally reduce quality of life, increase carer burnout, limit opportunities for independence and meaningful contribution, reduce participant choice, and create greater long-term social and economic costs.

Thank you for considering our submission and the lived experiences of families navigating complex disability support every day.