Submission 2116

Wednesday 27th May 2026

To the Senate Community Affairs Legislation Committee,

I am writing to vehemently oppose the proposed NDIS reforms. I have serious concerns about many aspects of the bill as detailed below.

My name is Melanie Guiney, I give permission to use my name but not my contact details.

I am a hard of hearing Developmental Educator who has worked in the disability industry for 30 years in various roles. I have lived experience and am a participant of the NDIS.

Never before have I seen such uncertainty, fear, anger, frustration and helplessness within our community. It is heartbreaking to watch as the people behind the Bill are stripped of their much needed support.

I am a sole trader who has provided sexuality and relationship education to people with an intellectual and developmental disabilities, their families, therapy teams and direct care supports.

I am also an end of life doula supporting people with intellectual disability to understand death, dying, grief and providing support to put their will and preferences in order for end of life care directives.

My daily sexuality relationship education role can entail scenarios such as these:

• Supporting teenagers with intellectual and developmental disability needing education resources, just like their non-disabled peers to teach them age-appropriate and accessible information about affirmative consent, but that also includes information and advice that relates to the impact of their disability. This keeps them safe from offending and being taken advantage of.

• Counselling and support for people with intellectual and developmental disability whose only experience of sexuality has been sexual assault. Please remember that according to ‘The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability’ reported that 55 in every 100 disabled people have experienced sexual and/or physical violence since the age of 15.

• Supporting people with intellectual disability to navigate their emerging sexual feelings and sexuality through puberty or for middle aged people with a uterus who are trying to understand what is happening to their body through menopause

Submission 2116

• A woman with an intellectual disability living in a group home wanting to invite their intimate partner to their home but needing support from the staff working in the house. Negotiating to have this relationship experienced as others do in the community and reducing barriers to this occurring.

• Assistance with training direct care staff for a person with physical disability or chronic pain who is in a relationship (including assistive devices and aides but also trained support workers)

• Supporting those with profound intellectual and developmental disability to understand the concept of public and private so that they know where the appropriate place to masturbate and to prevent them from coming into contact with the justice system by offending.

• Supporting care teams to understand the sexual behaviours of concern of a person with an intellectual and developmental disability and how to best support them with comprehensive education, positive behaviour support and compassion to have pleasure and safety.

• Supporting all my participants to have safety and respectful sexual relationships

End of Life Doula:

• To support people with a disability, their families and supports to understands about what death, active dying and grief is.
• To uphold the right for someone to have their last will and preference heard, documented and fulfilled
• To support people with intellectual and developmental disability and their families to document life stories, end of life care directives and create legacies.
• To be a part of the end-of-life support team for a person with intellectual and developmental disability

My key concerns are;

Budget resets and funding rules.

This outlines that Capacity Building, to improve daily living budgets will see a 10 % reduction. As a sexuality educator I offer unique safeguarding services that support people with disability to build protective behaviours and keep safe in the community, as outlined above. I can see that sexuality education and support, which is a fundamental human rights under Article 25.a (p. 18) of the Convention on The Rights of Persons with Disabilities: “Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programs as provided to other persons,

Submission 2116

   including in the area of sexual and reproductive health and population-based
   public health programs.”

I can see that this budget reset will not allow the access that people with intellectual and developmental disability require to live safer sexual lives.

This also outlines that ‘limits on unused funding will no longer accumulate and roll over’. This occurs in a person’s NDIS plan for several reasons, often because there are not enough services within their geographical area and they are waiting on extensive waitlists, such as mine, to support them, or a crisis occurs etc

I ask that you consider the joint position statement that thirty-eight disability and allied health organisations and services across Australia have signed that strongly opposes any reform to the NDIS that allows the National Disability Insurance Agency (NDIA) to exclude services without consultation or following a process based on “reasonable and necessary” supports, particularly as they relate to sexuality supports for people with disability.

https://pwd.org.au/joint-position-statement-ndis-and-sexuality/

Tighter eligibility and plan reassessments

The Bill states that prospective participants must exhaust “all appropriate treatment options” and mainstream systems (such as the health or education sectors) before the NDIS will cover the funding.

My participants have disabilities that are valid, permanent, lifelong and ongoing and will not get better despite treatment and furthermore if they could access mainstream services they certainly would! However, their disabilities are as such that they have to jump considerable hurdles and face multiple barriers to access simple mainstream services e.g., try having a teenage boy have dental work when they have an intellectual and developmental disability, are therefore scared of change, unpredictable environments, people and have sensory specific aversions which in turn result in behaviours that challenge any mainstream dentist. Also, my very role exists because mainstream services cannot provide comprehensive sexuality education within a mainstream setting to people with intellectual and developmental disability and people are already falling through the gaps in the first instance.

The “Yes” and “No” Lists: New guidelines clarify exactly what supports are considered legitimate NDIS expenses, explicitly excluding items like sexual services.

Unfortunately, this often means that the people who require sexuality and relationship education are also unfunded. This is so devastating as it puts them at risk of abuse and depletes their quality of life. In 15 years of working in sexuality and relationship education I have support only 2 people to explore their sexuality through a sex worker

Submission 2116

(which they paid for themselves!) and this education was around what they are to expect within the session and to understand what the experience will be like.

All plans should be assessed individually as each person has various needs and there should be no benchmarks or one size fits all.

Proposed support needs assessments

These are likely to be delivered by NDIS employed workforce who possibly don’t have the level of disability knowledge and experience, and they are non-allied health professionals. It is thought that an adaptation of the I-CAN assessment and a Personal and Environmental Questionnaire (PECQ) although this has not been made clear. Concerningly assessments will not be face to face, within a persons home environment and I possibly not with the person with the disability. I can only see these support needs assessments benefiting the cost cutting of the NDIS and not the person with disability. The participant is not able to view a draft of the support needs assessment report which is incredibly concerning.

These will then inform a participants budget but no detail about how this will happen has been released. Then the only opportunity of review for their budget is again via another Support Needs Assessment.

This creates concern around highly standardised assessment approaches, reduced clinical discretion and potential reliance on actuarial or benchmark-style models and increased use of “objective” assessment methodologies.

Ministers power to cut funding without appeal and the loss of review rights

There are so many concerns regarding ministerial powers within the NDIS

Cuts to the social and community participation budgets of participants is unethical. Despite the media trying to portray that people with disability are having latte’s at café’s and frivolously getting out and about enjoying the world! The truth is that most participants use Social and Community Participation budgets to do life administration, go to the doctor, podiatrist, pharmacist, appointments related to their disability that they would otherwise not be able to do themselves due to their disability. This is clearly sending the message that the NDIS do not want to see people with disability present in the community. Just because a budget change doesn’t mean that a participant needs change. This puts participants at risk in their home instead of the community.

A participant I’m working with who is living in Supported Independent Living currently only has 5 hours to access the community per week. Imagine that, only having 5 hours out of your house per week to be able to attend to your basic needs?

There has been changes allowing the minister extraordinary powers that permit across the board percentage reductions (up to 99%) for reasons of financial sustainability.

Submission 2116

Regarding the bill significantly restricting the rights for re-assessment processes but:

• Extending decision time frames from 21 days to 90 days. A plan often needs to be re- essed in a time of crisis which could be significant decline of participant, carer breakdown, escalation of behaviours of concern, equipment failure or housing instability. This longer period leaves participants with no support for a longer extended period and results in in a significant increase in risk for the participant, this could mean greater carer burnout, increases in restrictive practices and an increase in safeguarding concerns.

There is a transfer of the responsibility for pricing decisions to the minister of the NDIS from the 01/07/26. Obviously, there was distrust in an independent authority, and this is also very concerning.

PARENTAL RESPONSIBILITY

We already know that parents and primary carers save the Australian economy $77.9 billion per year by providing support to people with disability.

I work with many parents who are exhausted and burnt out. While I acknowledge that the parenting role involves, transport, supervision, emotional support, behaviour management, prompting, routine management, and assistance with daily living tasks for many of my participants parents the intensity, frequency, complexity and sustainability of these supports is vastly different from what is typically expected for a child the same age.

I have worked with parents who must patiently and kindly redirect their son to their private bedroom, prompting them to put their penis in their pants and masturbate in private up to 20 times in an hour, often whilst this behaviour is escalating and they are being hit and scratched and potentially ejaculated on.

I have watched as a mother must protect one of her children from being inappropriately touched by her other child (with a disability) on a continual basis.

This is not “mainstream” parenting this is parenting a child who requires ongoing support and supervision, continual emotional regulation, working on routine and predictability that changes the life of every person in the household. This is not sustainable. Many of the parents of participants I work with are exhausted by the time they reach me and don’t have the time or skills to specifically teach sexuality and relationship education in a comprehensive manner to their child, neither is it appropriate to be teaching some of the private content to their older teenage children. This also assumes that the caring role finishes for them at 18 (many of their same aged peers are in relationships and fully independent) and as we know the role of a parent with a child with a disability is ongoing, way past the age of 18, as many don’t leave home and are dependent on their parent until the parent can no longer cope or dies.

Submission 2116

much more cost efficient to provide comprehensive sexuality and relationship education well, when a child is at their peak learning and in the developmental period e.g., at school. Unfortunately for many participants this doesn’t happen and I often see adults with very little awareness about their body and its functions, puberty and limited safety skills which in turn leaves them at risk of sexual assault, leading to trauma etc

My lived experience

“Nine years ago, my life changed when I became hard of hearing due to a genetic condition known as Mitochondrial Inherited Deafness and Diabetes (MIDD). The impact on my daily life, my work, and my family has been profound. I have always tried to meet these challenges with resilience, but the past two years have pushed me to breaking point.

On 18/05/24, I submitted my Access Request to the NDIS with the hope that I would receive the support needed to continue living with dignity, choice, and control. I believed the scheme would help me stay connected to my community, maintain my work, and preserve my quality of life. Instead, the experience has been deeply distressing. The lack of support, the constant delays, and the overwhelming red tape have left me exhausted, burnt out, and feeling invisible within a system that was designed to protect vulnerable people.

As a woman with disability, the barriers I am facing are not just administrative—they are gendered. Women are disproportionately impacted by gaps in care systems, often carrying the emotional and practical load of navigating services while simultaneously managing work, family responsibilities, and the social expectations placed on us. When support is withheld or delayed, the consequences compound: financial insecurity increases, safety becomes harder to maintain, and vulnerability grows. The system’s failures do not fall evenly, and women—particularly women with disability—are too often the ones left to absorb the impact in silence.

I am reaching out because I no longer know where else to turn. My hearing aids—essential for my work, my safety, and my ability to participate in everyday life—are about to expire. Despite almost two years of waiting, I have received no contribution toward replacements. My plan is not due for review until 06/03/26, leaving me in limbo and at risk of losing the ability to communicate effectively, maintain employment, and remain engaged in my community.

I hope you have some deep understanding of how this issue effects myself and other women, making us more vulnerable. I want to share my story with you, not only for myself but for the many others who are hard of hearing or deaf and are quietly struggling through similar experiences without support. I hope you may be able to advocate for fair and timely support for participants who are being left behind”

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Submission 2116

The above information was sent to Mark Butler’s office - minister for Health, Disability and NDIS. Within 10 days the decision was overturned, and I was funded $6,500 for hearing aids. I was sent an apology for the delays and poor administration of the scheme. Applying for the NDIS as an intelligent, articulate and NDIS savvy professional nearly broke me. This came at a cost of fatigue, burnout and mental health deterioration. But I ask, what chance does someone with complex needs communication needs, profound and multiple disabilities must advocate for themselves.

I have grave fears for participants in the NDIS scheme going forward. I see these new changes sucking any remaining choice and control out of the lives of people with disabilities, their families will consequently burnout from lack of appropriate and much needed support and years of experience of caring professionals will walk away from supporting people with disabilities. This Bill still leaves holes for those who are fraudsters and exploiting our most vulnerable people, unfortunately if this Bill passes in its current form, it will be exploitation from the NDIS itself.

Reforms that destabilise the private and allied health workforce will destabilise funding and will contribute to workforce attrition and reduce access to experienced clinicians.

The NDIS was most effective when it provided timely, practical and flexible support to participants. When its core was choice and control and changed out lives making life worth living. Balanced reform should protect the sustainability of the NDIS and participants long term developmental needs, social and economic participation and quality of life that it was originally designed to support.

I please with you to thoughtfully consider this information and how it impacts the lives of participants because we are all only one accident from having a disability.

Kind Regards,

Melanie Guiney