Submission 3150 — Developmental Disability WA — NDIS Future Generations Bill | External submission

Submission to Senate Inquiry NDIS Future Generations Bill 2026

Impacts on staff who are parents of people with high and complex needs

Since 1985 Developmental Disability WA has been advocating for people with intellectual and other developmental disabilities and their families to have a better life through a range of activities and supports.

Our staff team is primarily made up of parents of people with developmental disability and many of the core management team will lose their jobs as a direct result of NDIS Future Generations Bill 2026 if it is passed.

The primary reason for their job losses, will be the lack of support for their sons and daughters while they go to work. Several of these team members are the primary breadwinner and risk poverty, by being forced onto a Carers Payment. Alternatively, they could seek fulltime care for their son/daughter, with a typical average cost of $600,000 to the government. These families are saving the government millions of dollars by choosing to provide the care themselves and at the same time ensuring their sons and daughters have good lives. Our 7000+ members very much value having knowledgeable staff, who are parents themselves, and trust them to provide real life support and advice, as they travel through the disability journey. They are irreplaceable!

In the following pages our staff who will be directly impacted by this Bill share their stories and concerns.

Linda

I am the mother of a 25-year-old woman who has Angelman Syndrome, she is a NDIS participant who due to her disability requires support 24 hours a day. She cannot speak, read, write, sleep through the night, do most of the self-care functions of daily life or maintain her own safety. I’m asking you to vote against the Bill unless it’s amended.

Why this bill matters to us:

The 50% cut to social and community participation funding from October 2026.

3 years ago her NDIS plan was substantially reduced allocating her only 6 hours of support for her to have personal care supports. This meant that, as she is unable to be left unattended for even 5 minutes while she is awake, that my husband or I would have to relinquish our employment to be at home to support her and take her out into the community to maintain entertainment, relationships in the community and friendships. We took the plan to the AAT and after 9 months of case conferences the plan was reviewed and Community participation funding was restored, which has enabled her to engage in the community.

This is the difference between societal isolation for her and also for her 65-year old parents who can continue their fulﬁlling and gainful employment. This was the intent of the Productivity Commission Report 2011 which led to the implementation of the NDIS.

If her current Community Participation supports were now cut by 50% across the board, we will have no choice but to move forward our plans for her to move out of the family home. We would need to rapidly expedite our application for NDIS Home and Living funding which will cost the scheme $500,000 -$600,00 per year to support to live her outside of the family home. Furthermore there would need to be an allocation of Community Participation funding, so that she is not ‘sitting around all day at home’ in a group living environment.

I am also deeply concerned about

The Minister’s new power to cut funding without appeal (s 34A).
The new functional capacity test and the 2028 onwards reassessment of everyone.
The tougher unscheduled reassessment rules and the loss of review rights.
Automated decisions and algorithms with no individual appeal.
Changes so that the written amount of funding in the plan will not accurately represent the real amount of reduced funding allocated to spend.

Terri

I am the parent of 19-year-old daughter who has Down Syndrome and is an NDIS participant. She is a very much loved and valued member of our family and her community. Our goals for her are to have optimum opportunities to live her best life in the way that she chooses.

However, she needs a lot of support to do most daily tasks. She has signiﬁcant communication challenges and has difficulty comprehending and processing information. She does not hold a functional level of literacy- and is unable to read.

She needs assistance with her personal care and has no social networks of her own. She experiences emotional overwhelm and social isolation due to an inability to handle unpredictability and uncertain environments. She needs assistance with emotional regulation, decision making and risk assessment.

I am deeply concerned about the proposed 50% reduction in community and social participation funding within NDIS plans. If my daughter’s current supports are reduced or not maintained she will no longer be able to engage in the activities she is currently supported to do so in the community. Without this ongoing and adequate support, she is at risk of experiencing a poor quality of life and is very vulnerable to exploitation and manipulation by others. If her supports were to be reduced my husband and I would have to consider reducing or stopping our current employment to provide care for her.

I ask the Committee to carefully consider the profound impact the following proposed changes could have on my daughter’s quality of life and on the lives of many other Australians living with disability.

Finally, I urge the Commission to consider the rights, dignity and safety of people with disability who rely on these supports to live safe and independent lives in our communities.

Sally

I am the mother of a 45-year-old woman with Rett Syndrome – a severe intellectual and physical disability. I live in Wanneroo, and she lives ﬁve minutes away in Sinagra.

I oppose many of the changes proposed in the NDIS Future Generations Bill 2026. In particular, the 50% cut to social and community participation; the Minister’s new power to cut funding without appeal and the reassessment of everyone from 2028 onwards.

My daughter cannot do anything on her own except breathe. She requires two to one for all daily living tasks including outings. Her funding for social and community participation is VITAL for her to be able to go out and do ‘normal’ things, that we all take for granted such as shopping, coffees and joining the family for birthday parties etc. Without an adequate amount of this funding, she will be stuck at home day after day. That is no life for anyone, or perhaps that is what the designers of the Bill wants – people with disabilities to be out of sight and out of mind.

The power this Bill gives to the Minister is frightening. No one person should have such control over people’s lives. It is reminiscent of the control government had over indigenous people’s lives last century. Everything should be open for appeal and due process.

Rett Syndrome is a progressive neurological condition that means my daughter is slowly deteriorating. Continual reassessment every year is a waste of the government’s money.

I am asking you to oppose this Bill unless it is amended and to write back with your position.

Tabitha

I am the mother of an 18 year old daughter with Rett Syndrome who is a NDIS Participant and currently lives in the family home with myself and her sister.

The Impact of Rett Syndrome

Rett Syndrome is a severe disability that profoundly affects her physical, communication and cognitive abilities.

Her disability has resulted in her being unable to walk independently or weight bear (due to her disability and chronic hip dislocation) and requires full assistance with transfers (hoist), mobility (wheelchair user) and positioning.

She needs help, 24/7, with all personal and hygiene tasks, including dressing, toileting, continence management, bathing and feeding and administering of medication. She is unable to perform any of these independently.

She is non-verbal. She has epilepsy that requires monitoring. She has a PEG (Percutaneous Endoscopic Gastrostomy). Her swallowing difficulties also necessitate a meal management plan and supervision during meals to prevent choking. Her scoliosis curve is at 80 degrees, and her chronic hip dislocation is currently not operable and is pain managed.

So as a mother what do I consider “the best life for my daughter”? Apart from being well cared for and loved by everyone who knows her – the best life for my daughter includes getting out in the community, participating in activities, day programs, meeting friends and being part of her local community. This is paramount.

Her life is meaningful as she is experiencing life and enjoying everything she currently is involved in.

Impact of the 50% cut to social and community participation funding from October 2026.

The impact of a 50% cut to social and community participation funding from October 2026 for my daughter is detrimental.

This also impacts me as a single mother working. Will I be able to continue work if her community participation funding is cut? If this is the case, is moving my daughter out of the family home and into Supported Independent Living Accommodation the answer. This would cost the government even more money than keeping my daughter at home as long as possible.

Furthermore, regarding the NDIS Future Generations Bill 2026 I am also deeply concerned about:

The Minister’s new power to cut funding without appeal (s 34A). 5

The new functional capacity test and the 2028 onwards reassessment of everyone.
The tougher unscheduled reassessment rules and the loss of review rights.
Automated decisions and algorithms with no individual appeal.
Changes so that the written amount of funding in the plan will not accurately represent the real amount of reduced funding allocated to spend.

Margaret

I am writing as the parent of a young man with complex disabilities who is an NDIS participant. At the beginning of this year, we transitioned our 22 year old son into his own home in Lakelands. He is non-speaking and requires 24 hour support and supervision. Due to the nature of his disability, he experiences signiﬁcant difficulties with emotional regulation and has behaviours of concern that require highly individualised and consistent support arrangements.

I strongly oppose the proposed Bill, as I believe it will signiﬁcantly reduce the availability of individualised supports for people with disabilities such as my son. The introduction of automated decision-making processes and algorithms, particularly without accessible avenues for individual appeal, has the potential to place vulnerable people at serious risk.

We were required to appeal my son’s most recent NDIS plan because it did not adequately meet his support needs. Initially, he was funded to reside in a shared home with two other NDIS participants. However, due to the complexity of his disability and support requirements, this arrangement would have been harmful both to him and to those around him. We were forced to undertake an internal review and subsequently an external review through the Administrative Review Tribunal (ART) in order to demonstrate why he required additional support. Following this process, he was ﬁnally approved for 24 hour support.

If my son’s current supports are reduced or not adequately maintained, he would no longer be able to live independently in the community. As a result, my husband and I would be required to signiﬁcantly reduce our working hours in order to provide care and support for our adult son ourselves.

I ask the Committee to carefully consider the profound impact the following proposed changes could have on my son’s quality of life and on the lives of many others disability:

The proposed 50% reduction to social and community participation funding from October 2026.
The Minister’s expanded powers to reduce funding without appeal rights under section 34A.
The stricter unscheduled reassessment provisions and the reduction of review rights.
The use of automated decisions and algorithms without access to individualised review or appeal mechanisms.

Finally, I urge the Commission to consider the introduction of an Australian Human Rights Act to better protect the rights, dignity, and safety of people with disability.

Melissa

I am writing as the parent of my 25-year-old son, who is an NDIS participant with a rare Genetic condition (Angelman Syndrome), signiﬁcant intellectual and physical disabilities.

My son is non-verbal, cannot read or write and requires 24/7 support and supervision. He needs full assistance with all personal care, including toileting, and although he can walk short distances with support, he is at signiﬁcant risk of falls. He currently lives at home with our family.

I am deeply concerned about the proposed 50% reduction in community and social participation funding within NDIS plans.

For participants like my son, community participation is not optional or recreational. Structured activities and regular engagement are essential to maintaining his wellbeing and preventing distress and challenging behaviours. At present, because he is appropriately supported and occupied, we do not require behavioural support funding. Reducing these supports is likely to increase pressure on other areas of the NDIS, resulting in higher overall costs.

These changes also risk creating a false economy for the scheme. If our son’s funding is signiﬁcantly reduced, we may have no choice but to seek Supported Independent Living (SIL) and/or Specialist Disability Accommodation (SDA) funding so that we can continue participating in the workforce. Supporting him to remain living at home is likely far more cost-effective than funding full-time supported accommodation.

More broadly, many families and carers may be forced to reduce work hours or leave employment altogether in order to provide additional unpaid care, increasing reliance on Carer Payment and other government supports.

I understand the need to ensure the long-term sustainability of the NDIS. However, I urge you to oppose reductions that may ultimately increase costs while placing greater strain on participants, families, and carers.

I respectfully ask that you advocate for the retention of appropriate community participation funding for people with signiﬁcant disabilities who rely on these supports to remain stable, engaged and living safely within their families and communities.

Lola

I am hoping that you will read this and please take it into account when you have the opportunity to vote for and inﬂuence the upcoming bill in parliament with regards to changes to the NDIS.

We are a family of four (with no informal supports) and our 21 year old daughter has Cohen Syndrome, intellectual disability, is legally blind and has medical issues requiring several injections daily. She can not be left alone or unsupervised and requires assistance with all daily living tasks including personal hygiene, showering, toileting dressing, eating etc. We have NDIS funding for approximately 32 hours per week. We as a family, take care of the other 133 hours per week.

If her NDIS community funding is cut automatically by 50% as proposed, I will have to leave my employment which is problematic from both a ﬁnancial and mental health point of view. BUT, more importantly for my daughter, she becomes isolated. She loses her social connections, will be unable to attend her 2 volunteering roles (which give her a sense of purpose and makes her feel valued), or attend courses to improve her conﬁdence and skills. It limits her physical activity and forces her to spend the majority of her time with her immediate family instead of a range of young people whom she has formed relationships.

I am scared that this situation will force our family to consider SIL (supported independent living) much sooner than anticipated which is not our preference. This will result in a much larger ﬁnancial burden to the government than continuing current supports which are working for our daughter and allowing our family to continue function without burning out. Not to mention that if I have to leave work, my contribution to the tax system and lack of superannuation are also an unintended economic consequence for the federal government.

The above is just one of our concerns among others such as taking away the ability to appeal, automated decisions and algorithms, and self management with unregistered supports.

I agree that the NDIS scheme needs to be sustainable over the long term and that there should be changes to reduce fraud and improve efficiency. However, I honestly believe there are signiﬁcant savings that can be made without punishing participants and putting already stretched families under extreme stress and pressure.

Many thanks for your consideration.