Dear Minister,

Please do not pass the NDIS Amendment Bill in its current form. It removes rights, reduces choice and control, and will harm people with disability in my community.

As I sit here, I am overwhelmed and feel betrayed with the proposed changes to the NDIS Bill. I, along with many others feel that the ideals set up for the rollout of the NDIS are now under major threat from basically inhumane assumptions of the government about current services for those with disabilities under the NDIS.

Reading and listening to disability lawyers explaining the proposed changed under the new NDIS Bill our family and thousands of other people with disabilities, along with their families/carers across Australia are terrified of what these proposed changes will mean.

Our journey with disability, began when our second son was born extremely premature at 24 weeks -16 weeks early and he spent almost the first 3 years of his life in hospital. He is now almost 28 years of age and has a diagnosis of Moderate Intellectual Disability, Genetic Condition - 8p23 deletion Syndrome, Autistic Traits but under your new rules the holistic approach {evidence based best practice} just for one example will be abolished. In all other health related fields of assessment, it is ALWAYS standard practice to understand co-diagnosis and co-morbidities to improve impacts of diagnosis.

Despite the NSW Department of Education our family chose mainstream education for . Our family relocated 5 times to ensure that was given every opportunity for an education without prejudice of his disability. Multiple Formal Complaints and Human Right’s cases highlighted the Department’s failures for Education of students with Disabilities. completed Year 12 in 2017 after completion of TAFE courses and work experience organised by our family. This was the year that NDIS came to the Northern Rivers of NSW.

We spent a substantial time and financial commitment to educate ourselves as a family into the best practice and pathway for a good life for in the Community in which he lives. This education was predominately from other families here in Australia and overseas. Government organisations at both State and Federal level just prior to introduction of NDIS did not educate PWD, families and Carers – at that time I was working for a disability NGO who was in receipt of state funds.

Following schooling we have invested heavily in ’s Vision of A Good Life. Employment was a main focus and as we had aimed for high expectations during schooling we now concentrated on mainstream employment. Here I will include attachments of ’s Resume and current weekly schedule, which is full of volunteering roles, work at an ADE {Australian Disability Enterprise} and PAID employment at Coles Australia. is unable to do these roles without involvement of a Support Worker.

Previously under the NDIS schedule of supports and codes able to utilise for invoicing we claimed these roles under Employment – Finding and Keeping a JOB. This code ceased in 2021 and we were forced to use Social and Community Participation. To this day and 5 years later this component of my sons NDIS funding still sits within his plan {unable to be accessed as it was NDIA managed} – effectively a Plan funding decrease.

This does not reflect his employment. Proposed changes now suggest that ALL participant’s will have their Social and Community participation funding effectively slashed.

I would appreciate if someone could explain how my son will attend these volunteer and paid employment rolls and explain the logic of then creating unemployment of an Australian contributing taxpayer.

The recent media campaign of the last month’s infers and promotes the view that all people with disabilities use the NDIS funding to attend coffee shops, movies and having haircuts. This portrayal is highly inaccurate, derogatory and at best inflammatory towards those that have funding under the NDIS. Recent comments by Federal Ministers have fed into this rhetoric which the general public with no real understanding of the NDIS and the realities of difficulties“ and substantial issues of the running of the scheme.

Families and Carer’s have known and understood since the rollout and progression of the NDIS that substantial issues and sustainability concerns are and have been identified.

As a parent we have had to personally deal with,

1.Fraud and overcharging 2.Repeated sacking of poor support workers 3.Formal Complaints of Organisational poor practice. 4.Breaches of Human Rights and Confidentiality 5.Reports to Quality and safeguards Commission. We remain with no communication after 3 months following submission. 6.Negotiating with services about the non-face to face charges which organisations charge at a huge cost to my sons funding with NO explanation for these added charges. 7.Negotiating with independent support workers who under the NDIS price guide are able to charge the exorbitant hourly rate of over $70 +

I am a Registered Nurse, Registered Midwife and have added qualification of Community and Child Health. I do not earn an hourly rate of $70. I understand that this figure set was to bring quality to supports for the vulnerable in our community. However, this is not the reality and certainly not eventuated in a stable support worker work force.

There are quality support workers but there are also a substantial number who with no experience, education or real interest are drawn towards support work for the financial hourly rate. Those who are employed through registered organisations also fail to be educated by these organisations or properly vetted for these positions. The object failure to set reasonable rates puts the pressure firmly back on families because of these limited options. Either pay the top rate or have no support. Not much of an option.

The added insult is that the price guide is edited every 12 months and there is a price increase for not only support staff but for every service that may be claimed under the NDIS. There is not any other workforce within Australia who receives an automatic increase annually. This does not also lead to better quality of services – it has turned the NDIS rates and charges which can be invoiced into a “money making venture.”

There are 2 arms to the NDIS – those who are employed under the NDIS framework to provide governance of the scheme and those who are at the face of the organisation to have participant

ADDRESSING THE DISPROPORITIONATE IMPACT ON WOMEN

In this part of my submission, I wish to address the significant and disproportionate impact that the proposed NDIS Bill will have on women with disabilities, mothers, family members, and unpaid carers.

For many years, women have carried the overwhelming responsibility of supporting family members with disability, often at enormous personal, financial, social and emotional cost. The proposed changes fail to recognise this reality and risk placing even greater burdens on families already stretched beyond their limits.

My Friend’s Story

My friend is turning 70 this year. She continues to be the sole parent and lifelong support person for her son following the death of her husband 15 years ago. I am 63 years old and, until two years ago, worked as a midwife. However, due to the unreliability of disability supports and services in our area, continuing employment became impossible.

Every Australian—regardless of gender—should have the opportunity to participate in paid employment, build financial security, and contribute to their superannuation. Yet for many mothers of people with disability, this opportunity is being systematically denied.

Questions for the Government

I ask the Prime Minister, Ministers, and Members of Parliament to consider the following:

• How am I expected to maintain employment and earn an income while continuing to carry full parental responsibility for my son?

I do not receive a Carer Payment, Carer Allowance, or other Centrelink benefits. Like many parents, I have worked wherever possible while simultaneously fulfilling caring responsibilities.

• What happens to my financial future and retirement security?

Years of reduced workforce participation have significantly impacted my ability to build superannuation. What provision exists for parents who are effectively prevented from working because they must fill the gaps left by inadequate disability supports?

• Does the proposed NDIS Bill contain any pathway that enables parents to relinquish lifelong parental responsibility?

If so, when does this occur and what support structures are available?

• When does parental responsibility end?

For many parents of adults with disability, it appears that responsibility continues indefinitely. Is it the Government’s expectation that this responsibility only ends when the parent dies?

• When does my 70-year-old friend and I at 63 years get to stop caring?

After decades of caring, advocating, coordinating supports, and protecting her son, when is she permitted to simply be his mother?

The Financial Reality

The proposed changes create a bleak financial future for families such as mine.

I am a qualified midwife in a profession experiencing a nationwide workforce shortage. Yet the demands of supporting my son mean that maintaining stable employment is increasingly difficult.

The Cost to Mental Health

I am fortunate to remain physically healthy.

However, years of battling systems, navigating bureaucracy, and fighting for essential services have taken a significant toll on my mental health.

Periods of uncertainty, such as those created by the proposed NDIS changes, are often accompanied by increased stress, anxiety, and depression. When disability services are under threat, families are forced back into crisis mode.

Families Are Running a System Without Support

The NDIS expects parents and family members to coordinate supports, manage funding, recruit workers, navigate complex regulations, monitor service quality, advocate for rights, and plan for the future.

In effect, families are being asked to run a small business—without training, without remuneration, and often without adequate support.

Everything I have learned has been through my own research, at my own expense, and in my own time. I have learned from other families and from international experts who have demonstrated how Social Role Valorisation (SRV) principles can support genuinely inclusive lives for people with disability.

Over the years, I have effectively gained an informal qualification in navigating disability systems. That expertise has come at a personal cost. I often reflect that I would have liked to study law, but caring responsibilities left neither the time nor the financial capacity to pursue it.

A Lifetime of Advocacy

For decades I have advocated for my son’s rights across the health, education, and disability sectors.

This has included:

• Pursuing complaints through the Australian Human Rights Commission regarding multiple breaches by education authorities.
• Serving on boards and committees.
• Contributing to Senate inquiries and consultations.

• Delivering speaking engagements and community education.
• Serving as Chair of a national board representing CYDA - Children and Young People with Disabilities Australia.
• Working as a CEO within family-run disability services.

These contributions have largely been unpaid, driven by necessity rather than choice.

The Human Question

After decades of caring, advocating, coordinating, fighting systems, filling service gaps, sacrificing careers, sacrificing superannuation, and carrying responsibilities that would otherwise fall to government systems, I ask a simple question:

When can my 70-year-old friend and I stop?

When can we simply be our sons’ mothers?

The Broader Impact of Current Government Messaging

Current media coverage and government announcements suggesting that supports relating to social and community participation may be reduced are already causing significant uncertainty.

This uncertainty affects:

• NDIS participants.
• Families and carers.
• Disability service providers.
• Support workers.

Many support workers are now questioning the future of their employment in the disability sector. Some have already left or are considering leaving in search of more stable employment before a potential workforce exodus occurs.

If this trend continues, the consequences will be significant and severe.

The burden will not disappear—it will simply be transferred back onto ageing parents, family members, and unpaid carers who are already carrying more than their fair share.

The proposed NDIS reforms must recognise that when formal supports are reduced, families absorb the impact. For many of us, there is simply no capacity left to absorb any more.