National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
SUBMISSION
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
Submitted by: Aimee Freeman
Date: July 2026
Purpose
This submission strongly opposes the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 due to the significant risks it poses to people with disabilities, their families, providers, and support workers.
If these amendments are passed, the Minister will have extraordinary powers to make decisions that could result in significant funding cuts, suspension of plans, automated decision making and referrals of NDIS participants to non existent or inappropriate services. Alarmingly, there would be no clear avenues for participants and plan nominees to appeal such decisions.
The Bill as currently proposed lacks clarity. People with disabilities and their families are uncertain about who will lose funding, the extent of funding cuts and which cohorts will be removed from the scheme entirely or denied access.
The Bill raises serious concerns regarding the safety and wellbeing of people with disabilities and threatens their ability to access community services which are necessary to living a full life. The Bill, if passed, will risk increased isolation for people with disabilities who will no longer receive support for community access.
Furthermore, the prevailing narrative that portrays people with disabilities and their families as greedy is both damaging and inaccurate.
Background Information
I am a 47-year-old married woman who works full time as a high school teacher. My husband, Mark, also works full time in the IT industry. We have been married for 26 years and have two children. Bianca, who is now 21, has a significant disability caused by Trisomy 21, Down Syndrome. We also have a son, Robbie, who is now 17 years old and completing his HSC this year.
After a normal pregnancy with no indication of her disability, Bianca was born on 15th June 2005, and our lives have been impacted significantly from this day. There is never a day where we don’t adjust daily activities or provide additional support for Bianca. When the NDIS was piloted in our area in 2013, Bianca was accepted onto the scheme, we felt very grateful that we finally had some support for her significant needs.
I am the plan nominee for Bianca’s NDIS plan and coordinate all supports for her. In addition to this, I am her representative for Centrelink as she is unable to access financial support through the government herself and have organised her Companion Card, Proof of Age Card and Mobility Parking Permit as she is unable to fill in forms herself and has no awareness of her own support needs.
Bianca is very connected to all members of her family, and we are very committed to her. However, the relationship I have with her is quite different from other mothers of 21-year-old daughters. Bianca relies on me for assistance with daily life which includes coordinating her supports, communications, finances, appointments and social activities. Bianca trusts me to keeping her safe and looks to me for direction and support in all situations. The NDIS has enabled me to broaden her support network, ensuring she can safely participate in community-based activities as a 21-year old young woman who is non-verbal and has significant intellectual and physical disabilities.
Mark and I provide her with a safe and supportive living environment. We have a very limited network of informal supports which include a maternal grandmother, a paternal grandmother and two uncles, one aunt and five cousins. None of these extended family members provide support with her day-to-day care, nor do they provide short term respite or transport. If this Bill was passed, I have very serious concerns that additional care demands will be placed on families, like ours, who already have limited informal support networks. During my recent interactions with NDIS representatives, I noticed a clear shift towards encouraging people with disabilities to rely more heavily on informal supports. If the proposed Bill is passed, it will grant the Minister extraordinary powers to substantially reduce funding for essential and reasonable supports, which is a huge risk to people with disabilities who have a limited informal support network.
Furthermore, our social circle has significantly diminished as we have had to withdraw from ‘parent only’ activities due to our caregiving responsibilities for Bianca. The persistent narrative that families expect the NDIS to cover the entire financial cost of caring for a person with a disability, thereby threatening the scheme’s sustainability, is deeply misleading. Many families like ours make continual sacrifices to provide substantial care and only seek support to guarantee the safety and wellbeing of their loved ones with disabilities.
In addition to this, Bianca’s maternal grandmother has required significant support from me. She has been battling with bowel cancer since 2018 and has had many significant health challenges beyond the cancer diagnosis. She suffered a heart attack in May 2024 and had surgery in October 2024 for a twisted gut. This has placed additional care demands on me which has led to feeling heavily burdened with care responsibilities for my daughter and my mother whilst maintaining my commitment to full time work.
I initiated contact with the NDIS in July 2024 to ensure adequate funding and supports were in place for my daughter’s transition from school. After 133 days of no response from the NDIS, I received a phone call out of the blue, resulting in her plan being reviewed and approved in under 24 hours, resulting in a significant funding cut. This left us with serious concerns over her safety once she left school. This scenario represents the outcomes which will become more commonplace if this Bill is passed.
The ongoing uncertainty surrounding the proposed Bill has left me feeling very fearful for the future. There has been an insufficient level of community consultation. Instead, the focus appears to be on amending the legislation to enable more efficient funding cuts with no rights of appeal.
A Day in the Life of Bianca
Bianca has significantly higher support needs compared with a same age peer. To build understanding around what caring for a person with a disability can look like, I have provided a summary of her support needs throughout the day.
Morning routine:
-
Parent/support worker wakes Bianca, she cannot set an alarm herself.
-
Parent/support worker reminds her to go to the toilet when she gets up.
-
Parent/support worker to change bedding if Bianca has wet or soiled the bed overnight or in the morning.
-
Parent/support worker showers Bianca and cleans up any spills in her bedroom
-
Parent/support worker rinses, washes, and hangs up sheets and soiled clothing.
-
Parents coordinate support to ensure that Bianca has a meaningful activity to engage with each day.
-
Parent ensures there are no trip or slip hazards in the home and maintains a calm and organised environment to avoid triggering anxiety/OCD behaviours.
-
Parent/support worker assist Bianca to select clothes appropriate for the day’s activity and weather conditions.
-
Parent purchases clothing to exclude zippers and/or buttons.
-
Bianca needs assistance from a parent/support worker to put on her shoes, due to orthoses or laces.
-
Parent/support worker brushes and ties back her hair.
-
Parent/support worker supervises Bianca making breakfast including use of knives.
-
Parent administers medication for OCD/anxiety.
-
Parent/support worker packs Bianca’s bag by preparing food, filling her drink bottle and ensuring that she has money for the day activity.
-
Parent/support worker washes her face and applies sunscreen.
-
Parent or support worker transports Bianca to her activity. She is unable to use public transport by herself as she does not understand time and place and cannot use a mobile phone in the event of an emergency.
During the day, whilst we are at work, Bianca attends day programs focused on building her skills across many areas. While on day programs she needs:
-
Safe transport to and from day programs.
-
Support to socialise and communicate with other participants throughout the day.
-
Meaningful activities to be organised and planned.
-
Supervision to ensure she does not wander off, fall over, and during transitions between activities and locations.
-
Toilet reminders from day program staff.
-
Support from day program staff when she soils herself including changing and cleaning up spills.
-
Supervision with eating and assisting with food selection and preparation throughout the day.
-
Supervision and assistance with transport and finance during day programs.
-
A calm and organised environment to avoid triggering OCD behaviours. Bianca cannot independently leave home, catch public transport, cannot drive a car, cannot use a mobile phone to communicate with us as her parents and cannot clean up biohazards when she is sick or has a toilet accident. Due to the severe restrictions on her verbal communication, she does not have a group of friends with whom she socialises outside of a structured environment. The NDIS has provided many opportunities for her post-school, ensuring she is not left isolated and unsafe at home.
Afternoon routine:
-
Parents coordinate afternoon support staff for Bianca. She needs full supervision from a designated carer, until a parent finishes work.
-
Support worker reminds Bianca to go to the toilet.
-
Support worker cleans up toilet accidents.
-
Support worker rinses soils clothing.
-
Support worker showers Bianca.
-
Support worker assists with clothing selection appropriate for the activity and the weather.
-
Support worker assists Bianca to make an afternoon snack and assists with use of sharp knives.
-
Support worker maintains a calm and organised environment to avoid triggering OCD behaviours.
-
Support worker selects an appropriate afternoon activity which may include puzzles, word games or physical activity.
-
Support worker provides full supervision until a parent finishes work.
- Parent organises and attends appointments which include GP appointments, OT, Speech therapy,
Physiotherapy appointments, haircuts, orthotics/podiatrist appointments and attending gym classes.
Evening routine:
- Parents are financially responsible for cost of food.
- Parents do grocery shopping to ensure healthy foods are available.
- Parents prepare and cook healthy meals for Bianca to maintain a good diet.
- Parents supervise eating to ensure no issues with choking.
- Parents assist to cut meals into smaller bite size portions.
- Parents administer evening medication, the contraceptive pill, to manage menstrual cycles.
- Parents assist with teeth brushing.
- Parents ensure that Bianca goes to bed at a reasonable time.
- Parents ensure that healthy sleeping habits are maintained.
- Parents and brother maintain a calm and organised environment to avoid triggering OCD behaviours.
- Parents wash any items of clothing soiled during the day.
Conclusion
Now that Bianca has finished school, I am deeply concerned that if the Bill is passed, we will face a very real possibility of significant funding cuts. This could reduce NDIS support to a level that may force me to resign from my permanent full-time position in order to provide transport, ongoing care, and support for Bianca. While this may save the Government money in the short term, the long-term cost will be far greater. I would no longer be able to work, and my daughter would become increasingly reliant on me as her sole carer. A constant concern on my mind is: if something happens to me, what will happen to Bianca?
Since 2013, NDIS support has significantly improved our quality of life, ensured our financial security for the future, and enabled us to meet Bianca’s needs within our home while maintaining our wellbeing and relationships. We remain committed to providing the best possible care for our daughter. Although challenges arise, the support we have received from the NDIS has been invaluable.
Families like ours will face an uncertain future if this Bill is passed. Greater community consultation is essential, and the voices of people with disabilities and their families must be heard and carefully considered.