Submission 1794

Submission 1794

Submission 1794

About Me

I live in Melbourne and am the full-time carer for my 19-year-old daughter, who has a complex ultra-rare genetic condition called FOXP1 Syndrome, which affects approximately 30 people in Australia. There is currently no cure for FOXP1 Syndrome, and very little is known about how the condition may progress or regress over time. Due to the rarity of the condition, there is also limited clinical understanding of its long-term impacts.

My daughter may lose her functional capacity to do everyday tasks or interact with her community. Her physical or mental health may also decline. My daughter may never be able to independently manage everyday tasks or fully participate in her community. Many of my daughter’s symptoms such as moderate intellectual disability, obsessive compulsive disorder, communication challenges, autism, attention deficit hyperactivity disorder, low muscle tone and anxiety are just some of the symptoms that make up her disability and affect her daily functioning and her ability to independently participate in the community.

I founded a not-for-profit charity – Syndromes Without A Name (SWAN) Australia which supports families caring for a child with an undiagnosed or rare genetic condition. Like many SWAN families I have serious concerns about the impact of the proposed Bill may have on the rare disease community, including matters addressed throughout this submission.

I serve as the Australian Ambassador for the International FOXP1 Foundation. Unfortunately, due to the limited time frame for this submission, I was unable to consult with our members to write this submission on their behalf. However, I am writing from both personal lived experience and my extensive engagement with families navigating complex disability and rare disease.

My Concerns

NDIS Ministers And Agencies Powers

My primary concern is the Bill gives the Minister increased powers to reduce NDIS plan budgets and supports without participants being able to appeal their plans if they disagree with the decision around supports and budgets.

Rare diseases by nature are highly complex and often poorly understood. Many clinicians do not know how newly diagnosed rare diseases will progress and the impact they will have on the person’s ability to function in daily life and within their community.

Many participants and their families already experience significant anxiety during plan reviews and reassessments due to fears their supports may be reduced. If the proposed legislation is passed the NDIS Minister has the power to remove funding or any supports from a participant’s plan at any time, which can create anxiety and uncertainty for participants and their families. They also have the potential to cap any support and/or the number of hours at any point in time. They could also set maximum funding limits and maximum ratio support limits. I would certainly not want to see 1:1 supports be removed from participants’ plans who require that level of support as they may become more isolated, more dysregulated and the burden of caring put back on exhausted parents and carers. To make it worse there is not an appeal process for plans that have been cut by the Minister.

The proposed legislation states that a participant’s plan could be suspended or revoked at any point in time if the NDIA cannot contact you. However, the proposed legislation does not say how many attempts the NDIA needs to make or how the NDIA has attempted to get hold of you before they utilise their powers. If a participant is requested to supply the NDIA with paperwork within a set time frame and if they don’t, the CEO can apply penalties if the participant does not respond to this request. Many participants have an intellectual disability and receive a disability support pension so would struggle to pay for any penalty order placed on them.

Submission 1794

Recommendation:

• Limit the amount of power the proposed legislation gives to the NDIS Minister to ensure their position is not abused at the detriment of people with disability.
• Provide a means by which plan supports and budgets can be appealed.
• Specify a time frame of 28 days that participants can respond to requests for information and do not cap the number of attempts the agency needs to make to contact a participant. The agency should be required to use more than one method of communication when trying to contact a participant for information.

Cuts To Social and Community Participation Funding and Social Economic and Community Participation Funding from October 2026. The proposed 50% cuts to Core funding - Assistance with Social, Economic and Community Participation and 10% cuts to Capacity Building funding - Increased Social and Community Participation are concerning.

This not only creates uncertainty but has the potential to isolate my daughter more than she already is. She cannot participate in her community without the help of a support worker, and she cannot be left alone due to her own safety and the safety of others. Without access to her community, she will become more isolated than she already is. My daughter does not have the capacity to stay home all day and insists on leaving the house each day to regulate her emotions and if she is unable to do this, she head bangs, develops a tic and will leave the house on her own and run down the street and across roads without looking. She also has no awareness of stranger danger. I fear for her safety if she does not receive 1:1 funding so she can safely access her community. If support hours are cut, it can add additional stress and strains on families who are already stretched supporting their loved ones with disability, especially if they care for someone with extremely challenging behaviours, as the duty of care falls on them.

My daughter wants to be part of her community; she volunteers at the local op-shop and gives back to the community, but this would not be possible without a support worker accompanying her. In her community and with the support of therapy, she is learning to communicate and regulate her emotions as well as some basic daily living skills.

Due to work commitments, I do not have the capacity to take my daughter into the community and to her therapy appointments. So, the support workers accompany her to the local swimming pool so she can learn to swim and stay safe. They take her to the local op-shop so she can volunteer. Support workers take my daughter to her speech therapy appointments so she can learn to communicate, and to her occupational therapy appointments so she can learn and practice life skills away from the home environment. Support workers also take her to her behaviour management sessions, so she and her community can remain safe and she can learn to regulate her emotions and transition from one task to another safely.

Recommendation:

• Do not reduce funding for daily living social and community participation and capacity building supports as this has the potential to isolate participants.

Functional Capacity Assessments and Eligibility Reassessments for Existing Participants It is unclear how existing participants eligibility to the scheme will be reassessed as plans are renewed from 2028. The new framework proposes to use the I-CAN assessment tool to assess a participant’s functional capacity. However, this tool has not been tested on the rare disease community, and it may not be fit for purpose for everyone with a disability. We still do not know the extent of the training that someone is required to do so they can utilise this tool on participants nor do we know who will be responsible for delivering these assessments.

Submission 1794

It may be more appropriate to use a range of tools that are better suited to understand a participant’s functional capacity, including reports from experts such as clinicians and occupational therapists.

The current proposed Functional Capacity Assessments – the I-CAN tool only allows a person to appeal their functional capacity assessment with the Administrative Review Tribunal and not their plan supports or budget. The Administrative Review Tribunal can only request the participant have another I-CAN Tool assessment and does not have the power to overturn budgets or supports. This does not give a person the capacity to explain their current circumstances and needs, nor does it give the planner a true understanding of a participant’s needs and capabilities, nor does it provide participants with the opportunity to request a review or appeal their current supports or budgets. The algorithms that these I-CAN tools generate need to be made transparent to participants.

Recommendation:

• Do further consultation with the community to determine who is best place to assess a participant’s functional capacity and what is the most appropriate suite of tools and methods to use.
• Utilise external reports for people with complex disability and rare genetic conditions.

The Tougher Unscheduled Reassessment Rules, Restrictions and the Loss of Review Rights.

The proposed Bill has very firm criteria regarding who can request an unscheduled plan reassessment and the time frame of 90 days that the NDIA can respond to the request is too long for participants to wait. People with rare disease can deteriorate substantially in that time frame.

There is a need for flexible funding and urgent reassessments for people with rare disease as they can be episodic, and sometimes progressive neurological conditions. In many cases the pathways are unclear due to the rarity of the disease. There is a lack of natural history studies on the genetic condition to know how they are likely to progress or regress over time. Clinical expertise and occupational therapy reports and assessments should be sought in conjunction with Functional Capacity Assessments for people with disability as part of their Rare Disease

Recommendation:

• Enable participants to lodge reassessments and have their plans reviewed if their condition and needs change significantly. In the case where medical events take place, a clinical report prioritising the change of circumstance should trigger an urgent unscheduled plan reassessment within 7 -21 days, depending on the urgency of a participant’s needs.

Resetting Budgets, With Unspent Funds to Be Rolled Over to The Next Plan

It is not always possible to spend funds in a 12-month period if you are waiting on quotes and equipment orders to be filled. Unspent funds do not necessarily equate to unmet need. It could reflect not being able to find a therapist to meet your child’s need. For example, with FOXP1 Syndrome, the recommended type of speech therapy is dysarthria speech therapy yet it is difficult to find speech therapist who specialises in this type of therapy. In the case of my daughter, it can also take time for her to build a connection with support workers, and it is not always easy to find support workers who can tolerate her difficult behaviour, obsessive-compulsive behaviour, and her struggle to transition from one task to another. It takes time to build a team of people who can best support her support needs. The proposed resetting of

Submission 1794

budgets does not distinguish between one o0 funding that you have used and what you may be still waiting to purchase.

Recommendation:

• Participants should be able to justify the underspent funds and request that funding for supports are extended into the following plan.

Budgets, Funding, Support Caps and Worker to Participant Ratios My daughter has a complex disability support need. I envisage she will always require 1:1 support to remain safe at home and in her community due to her disability and significant behavioural challenges. I cannot envisage her living with others as she does not particularly like people and prefers her own company with just one person looking after her. She has no real friends and struggles to live in a world made for “typical people” rather than neurodiverse people like herself.

The model of mainstream community participation is overwhelming and over stimulating for her and the number of people who can understand what she is trying to say are few and far between due to her communication barriers. I fear if her plan budget will be decreased it will cause her to be more isolated as she will not be able to participate in her community without 1:1 support. A model of less support has the potential to be seriously risky for her and for others around her due to her unpredictable and sometimes aggressive behaviour. Without sustainable supports, the responsibility of caring and community engagement and capacity building will fall on parents, many who are single parents due to the relationship strain having a child with disability puts on families. These puts parents at risk of burnout and limits their ability to contribute their skills to the economy, including their ability to pay taxes which go towards funding the NDIS. If my daughter is to move out of home which is our goal for a few years’ time, she will have to be able to access 1:1 support to do so. No parent wants to die wondering what will happen to their child when they go. They want to know that we have a sustainable support scheme in the NDIS that will ensure their child can be supported to live their best life.

Funding levels cannot be appealed once the New Framework Plan starts, only the Agency conducted Functional Capacity Assessments can be reviewed. This is a serious deficit of the new framework. Participants supports and budgets need to have the capacity to be reviewed.

Recommendation:

• Do not instigate budget caps on supports and continue to fund 1:1 supports when a participant requires them.
• Enable plan supports and budgets to be reviewed when required.

Multiple Impairments People with complex rare genetic conditions often have multiple medical symptoms and multiple disabilities that occur concurrently with psychosocial disabilities, neurological symptoms, degenerative conditions, multiple impairments and chronic pain or symptoms that make it di0icult for them to interact due to social behavioural or environmental factors. Some of their disabilities are episodic, others are constant. You cannot segregate out the one disability that led them to enter the scheme in the first place. The proposed change of working to “arising directory from” instead of “arising from” could have significant consequences for the rare disease community as the NDIS could stop funding any of the supports for any type of disability at any point of time.

Recommendation:

• Allow participants to be seen holistically without segregating their disabilities.

Inclusive Communities

In the original planning of the NDIS there were three levels of the NDIS proposed, one of which was to rebuild mainstream organisations capacity to be more accommodating for people with disability. A lot more could have and still can be done. And whilst I welcome the government’s e0orts to support community organisations e0rts by allocating $200 million to do so, the proposed funding will not be enough funding for many community organisations to scale up to be disability inclusive. A token gesture is not enough to truly support participants like my daughter.

Recommendation:

• Provide guidance and more funding to encourage inclusive communities.

Conclusion

Whilst I welcome the elimination of automatic entry lists to the scheme, (something I have advocated for over the years because they disadvantaged people with rare disease), there are many areas of the prosed legislation that are cause for concern.

The NDIS needs to remain sustainable long term to help people like my daughter live their best life with the supports that enable them to do so. Plan budgets should not be cut to the detriment of participants needs, goals and aspirations. The NDIS was never designed to be a one size fits all model, so why is the legislation trying to streamline it more instead of allowing the scheme to focus on individuals’ participants’ needs. For people living with disability, the NDIS is not a luxury. It is essential to maintaining safety, dignity, independence, and participation in everyday life.