Failing to Plan is Planning to Fail

Proper planning and preparation prevent poor performance. The significant problems with the NDIS scheme as it currently stands are not legislative but rather stem from the implementation and operationalization of that legislation.

Firstly, let me make it clear that I do not support this bill. I argue that many of the tenets of this bill are unfounded or lack adequate and high-quality data. While most of us would agree that the scheme, as it currently stands, is not working optimally, the majority of the current issues are due to poor implementation and operationalization, focusing on short- term cost-cutting rather than whole-of-life planning.

If we were to return to the original tenets of the scheme—which are person-centered, goal-focused, and trauma-informed—I argue that we would achieve significantly better short-term outcomes for participants. Moreover, this approach would more effectively moderate long-term costs of the scheme and provide a greater return on investment across the entire community. It is true that at some point within its life, the scheme lost its way, focusing excessively on short-term cost-cutting to the detriment of both participants and the long-term health of the scheme.

Additionally, the NDIS review report was handed down just weeks after the final report from the Disability Royal Commission. We are still awaiting an official response from the government regarding their stance on both reports. Yet, the NDIA is already attempting to implement recommendations from the review before the legislation has even been granted passage through Parliament. This bill, clearly the first part of a multi-part legislative package, has also appeared in Parliament without the promised co-design period with the Australian disability community.

Finally, I remind the committee that Australia has significant obligations as a signatory of the UN CRPD. This bill appears to take the scheme in a direction likely to lead it further away from the rights and principles upheld by that treaty, potentially making it incompatible with Australia’s human rights obligations on several points.

PACE

The PACE computer system, which the agency rolled out nationally late last year, continues to cause significant hurdles for participants and providers alike. The most frustrating aspect is that significant issues and flaws in the design of PACE were identified during the trial in Tasmania. It was strongly urged by several stakeholders that the agency and the government ensure those issues were properly addressed before the wider rollout. Given the agency’s unwillingness to address the shortcomings, the problems identified during the trial became many times worse after the national rollout. A significant amount of agency resources are now spent addressing areas where the system—tailor-made at significant expense to the taxpayer—has instead become a burden. Many participants are unable to seek adjustments to plans or other critical changes in a reasonable timeframe because available resources within the agency are tied up in crisis management.

3P Program

The 3P program’s details are limited because the agency has never published anything publicly about it. It was implemented alongside PACE and was designed to make many operational changes within the agency to account for the automated functions of the Salesforce backend behind PACE. From confidential conversations with whistleblowers, it seems likely that Salesforce is already facilitating many automated AI-driven decisions. It is suspected that rather than creating plans from the ground up or determining a suitable budget based on participant evidence using the reasonable and necessary legislative framework, Salesforce may already be used to automate budget setting, even without legislative basis.

UN CRPD

The UN CRPD, which Australia is a signatory to, seeks to protect the rights of all people with disabilities. This is particularly relevant to the bill’s provisions allowing the Minister and/or CEO to form rules based on particular cohorts of participants. Forming rules or guidelines based on arbitrary attributes such as disability type, hours, or complexity of support is inherently incompatible with the human rights protected by the UN CRPD and should be seen as direct discrimination against participants. For instance, the recommendation to fund high support needs at a one-to-three ratio, despite promises that this will not force people into group homes, has already led to NDIS participants being told they need to live in shared accommodation. This is unsafe for many and does not meet their basic needs, vioating their rights and the original intent of the scheme.

Disability Royal Commission (DRC)

The most important recommendation from the Disability Royal Commission was the establishment of a Disability Rights Act to ensure the human rights contained within the UN CRPD were permanently enshrined and implemented in Australian federal legislation.

Despite signing the UN CRPD nearly 20 years ago, successive governments have failed to implement these human rights into Australian law. The mutual failure to do so demonstrates that neither political party wishes to grant these rights to the disabled community. A Disability Rights Act would have significantly altered the wording of this bill, preventing attempts to sideline fundamental rights of NDIS participants.

Assessments

The attempt to force mandatory assessments on NDIS participants and prospective participants is unwelcome and eerily similar to the independent assessments proposed three years ago under the previous government. These assessments suffer from the same issues: no single tool can adequately identify and quantify an individual’s complex support needs across diverse disabilities, goals, informal supports, and community and economic engagement.

Budgets

The budgetary mechanism proposed in the bill to replace the current reasonable and necessary framework is fundamentally flawed. It looks to previously failed systems and is incapable of producing suitable budgets for adequate funding and good outcomes. The diversity of disabilities and functional impairments necessitates an individualized approach. In 2021, Professor Bonyhady stated that he does not support robo-planning, which was not part of the scheme’s original architecture. Moving towards such a model is unacceptable and would result in poor outcomes for participants.

God Powers

The powers granted to the Minister and CEO in this act are unparalleled and exceed anything seen previously in the scheme’s lifetime. If the Minister requires such exceptional powers, equally exceptional protections for participants are necessary to ensure these powers are used for good and not abused by this or any future government. The ability to remove a participant for failing to provide information in a prescribed timeframe is particularly troubling, given the extensive delays within the allied health system and general shortages of qualified practitioners. This clause should be removed and replaced with options for the Minister and CEO to work effectively with participants and their stakeholders to identify and resolve issues.

Early Intervention

While I support front-loading expenditure to invest early in a participant’s life, many disabilities are progressive, and participants would benefit more from sustained, flexible support throughout their lives. Continual assessments and a focus on building sufficient capacity for participants to exit the scheme is counterproductive. We must return to the scheme’s original focus: ensuring good outcomes through person-centered, rights-based, goal-focused, and trauma-informed planning.

Removal of Reasonable and Necessary Supports and Establishment of Blacklist/Whitelist

The government’s attempt to exert greater control over the scheme through blacklists and whitelists is counterproductive and incompatible with the human rights protected under the UN CRPD. This approach increases regulation and control rather than enabling participants to fully realize their goals and dreams. Investing in reasonable and necessary supports, even those likely to appear on a blacklist, often leads to improved short-term outcomes and long-term cost reductions.

Need for Co-Design

Co-design is essential for the success and legitimacy of the NDIS. It involves actively involving participants, their families, and other stakeholders in the design and implementation of policies and programs that affect them. Co-design ensures that the voices of those most impacted by the scheme are heard and their needs adequately

• addressed. The absence of a co-design process in the development of this bill is a significant oversight.

Legislating co-design within the NDIS framework would mandate that any future changes to the scheme undergo a thorough consultation process with the disability community. This would include regular forums, surveys, and advisory committees consisting of participants and advocates. Co-design ensures that the scheme remains aligned with its original principles and continues to meet the evolving needs of participants. By embedding co- design into legislation, we can ensure that future reforms are participant-centered and uphold the values of the NDIS.

Reliance on Subordinate Regulations

The bill’s heavy reliance on subordinate regulation via unknown rules is highly problematic. Important aspects like assessments, budgets, and what can and cannot be funded under the scheme should be legislated within the bill itself, not left to subordinate regulations. This approach creates uncertainty and reduces transparency, as the specifics of these critical areas can be changed without parliamentary scrutiny.

Subordinate regulations can be amended more easily than primary legislation, which undermines the stability and predictability that participants rely on. This could lead to frequent changes that disrupt participants’ lives and erode trust in the scheme. Key elements like assessment processes, budget determination, and funding rules must be clearly defined in the primary legislation to ensure consistency, accountability, and protection of participants’ rights.

Legislating these aspects within the bill provides a robust framework that participants and their families can understand and rely on. It also ensures that any changes to these critical components undergo proper legislative scrutiny, including debate and consultation, thus upholding the principles of transparency and democratic accountability.

Workforce and Capacity Building

The ongoing challenges related to workforce and capacity within the NDIS cannot be overstated. The scheme’s effectiveness heavily relies on a skilled, adequately trained, and sufficiently large workforce to deliver the necessary supports to participants. Unfortunately, the current shortages and high turnover rates among support workers and allied health professionals are hampering the scheme’s potential.

It is imperative that the government invests in workforce development strategies, including comprehensive training programs, better pay, and working conditions for NDIS workers. This will not only improve service delivery but also reduce the administrative burden on the NDIA by decreasing the frequency of complaints and disputes related to inadequate or inconsistent support.

Mandatory Registration and Decreased Choice and Control

The proposal for mandatory registration of providers and decreased choice and control for participants will not necessarily improve safety or significantly reduce fraud. Here are several reasons why these measures are problematic:

1. Limited Impact on Safety: Mandatory registration of providers does not inherently ensure better safety for participants. While registration can standardize certain qualifications and checks, it does not guarantee the quality of care or suitability of providers for individual participants’ needs. Safety is better ensured through robust oversight, regular monitoring, and participant feedback mechanisms that focus on the actual delivery of services rather than just the registration status of providers.

2. Reduced Participant Autonomy: Decreasing choice and control undermines the fundamental principles of the NDIS, which are based on empowering participants to make decisions about their own care. Choice and

Impact on Choice and Control

Reducing these elements can lead to a one-size-fits-all approach that is less effective and less responsive to individual circumstances.

Impact on Service Quality:

When participants have fewer choices, there is less competitive pressure on providers to maintain high standards of service. Mandatory registration could create barriers to entry for smaller, potentially innovative providers, reducing the diversity and quality of available services. Participants benefit from a diverse marketplace where they can choose providers that best meet their needs.

Ineffectiveness in Fraud Reduction:

Fraud in the NDIS is more effectively addressed through targeted investigations, data analysis, and participant education rather than broad measures like mandatory registration. Fraudulent activity often involves sophisticated methods that can bypass simple registration requirements. Strengthening internal controls, enhancing data analytics capabilities, and increasing the capacity for investigative and compliance actions are more effective ways to combat fraud.

Administrative Burden:

Implementing mandatory registration for all providers can create significant administrative burdens for the NDIA and providers alike. This can divert resources away from frontline services and participant support, creating additional costs without corresponding benefits in safety or fraud reduction.

Participant Trust and Satisfaction:

Reducing choice and control can erode trust in the NDIS and decrease participant satisfaction. Participants who feel disempowered and restricted in their ability to make decisions about their care are less likely to engage positively with the scheme. Ensuring participants have control over their supports is crucial for maintaining trust and fostering a sense of ownership over their NDIS plans.

7. Greater Community Participation and Natural Safeguarding Relationships:

Greater community participation and natural safeguarding relationships can provide effective risk management and mitigation without unnecessarily or unreasonably limiting individual NDIS participants. Here’s how:

• Community Inclusion: Encouraging participants to engage in their communities fosters natural support networks. These networks include family, friends, neighbors, and community groups who can provide informal oversight and support, enhancing the safety and well-being of participants.

• Natural Safeguards: Relationships with people who genuinely care about the participant’s well-being serve as natural safeguards. These relationships often lead to proactive identification and resolution of issues before they escalate, providing a level of protection that mandatory registration alone cannot achieve.

• Empowerment and Self-Advocacy: Promoting self-advocacy and empowering participants to make informed choices about their care increases their ability to manage risks. Education and resources that help participants understand their rights and how to navigate the system can be more effective than imposing external controls.

• Holistic Support Systems: A focus on holistic support systems that integrate formal and informal supports ensures a more comprehensive approach to participant safety. This includes fostering environments where participants feel comfortable reporting concerns and seeking help from a variety of trusted sources.

• Flexibility and Responsiveness: Community-based approaches allow for greater flexibility and responsiveness to individual needs. By leveraging local resources and relationships, participants can receive more personalized and contextually appropriate support, reducing the need for rigid, top-down regulatory measures.

Mandatory registration and decreased choice and control are not the solutions to improving safety or reducing fraud within the NDIS. Instead, a balanced approach that enhances oversight, supports participant autonomy, and employs targeted measures to address fraud is needed. Encouraging greater community participation and fostering natural safeguarding relationships can effectively manage risks and provide robust protection for participants without imposing unnecessary limitations. By maintaining choice and control, the NDIS can continue to empower participants, improve service quality, and build a more responsive and effective system.

Transparency and Accountability

Transparency and accountability within the NDIA and the broader NDIS framework must be significantly enhanced. Participants and their families often face opaque decision-making processes and lack clear avenues for recourse when decisions do not align with their needs or expectations.

Implementing more robust mechanisms for participant feedback, independent review, and oversight can ensure that the NDIA remains participant-focused and accountable. This includes regular, publicly accessible reports on the scheme’s performance, financial management, and participant outcomes.

Long-Term Vision and Sustainability

The long-term sustainability of the NDIS requires a clear vision that aligns with its foundational principles. Rather than focusing solely on immediate cost-cutting measures, the scheme should prioritize investments that yield long-term benefits, both financially and socially. This involves recognizing the economic contributions of participants and their families when they are adequately supported.

Moreover, the NDIS should continue to evolve with a dynamic understanding of disability, incorporating the latest research and best practices. This includes fostering innovation in

Conclusion

In conclusion, while the intention behind the “Getting the NDIS Back on Track #1” bill might be to address pressing issues within the scheme, its current form poses significant risks to the rights, dignity, and well-being of NDIS participants. The bill appears to prioritize short-term financial savings over the long-term sustainability and effectiveness of the NDIS.

I urge the committee to reconsider the bill’s provisions, taking into account the feedback from the disability community and ensuring alignment with Australia’s obligations under the UN CRPD. By focusing on better implementation, workforce development, transparency, and a long-term vision, we can ensure that the NDIS fulfills its promise of supporting people with disabilities to live fulfilling, independent lives.

Moreover, legislating the requirement for co-design in all future reforms is essential. This would ensure that the voices of those most impacted by the scheme are heard and their needs adequately addressed, fostering a participant-centered approach that remains true to the foundational principles of the NDIS.

The reliance on subordinate regulations within this bill must be minimized. Critical aspects such as assessments, budgets, and funding rules should be enshrined in primary legislation to provide clarity, stability, and accountability. This approach will ensure that participants have a predictable and reliable framework, safeguarded by proper legislative scrutiny.

Thank you for considering this submission.

Addendum #1

What Should constitute a valid NDIS Support?

In essence, I am firmly of the opinion that there is no blanket black and white list, even if partially customised to particular disability cohorts that adequately accounts for the vast diversity of needs that is directly and inextricably related to disability. I would strongly advocate for the fact that the only way to ensure that people are able to have fair and equitable access to the specific supports and equipment that is personally relevant to them and their unique circumstance is to continue to have a set of guiding principles like we currently do with the legislation around reasonable and necessary and the guidelines as set out in the participant handbook that together inform what can be funded and then what can be legally purchased with that funding once it is allocated.

Just a few quick examples to illustrate this point.

• White Goods, for someone who has incontinence, a clothes dryer may constitute a significant improvement to daily quality of life, dignity, and independence all being significantly cheaper than the ongoing costs associated with a laundry service

• Sex-Related Services – Regardless of the patriarchal and puritanical views of certain members of parliament, the UN CRPD ensures that disabled Australians should have the same access to having a family as the rest of the community, and in seeking to deny such services the government would be denying that right. Let me explain, I have a friend who has severe quadriplegic cerebral palsy, they use a power wheelchair and receive a significant amount of funded support in line with the needs associated with their disability. They are married to someone who also has severe quadriplegic cerebral palsy, who also uses an electric wheelchair, and who also receives a significant amount of funded support, in line with the impact and needs associated with their disability. I’m quite happy to report that the couple in question are happily married and enjoy a mutually satisfying sex life that is in part facilitated by the assistance of sex worker who has been trained in how best to safely assist them both in areas of life that simply lie outside of what would be appropriate for the typical support worker to assist with such as physical positioning during an intimate act; Due to the nature of the support required, nor would it be an

Area Where Allied Health Professionals Can Replace Value Provided By That Sex Worker

Moreover, and in a more general sense, sex is a normal, healthy part of adult life, a part of the human experience, and where disability presents a significant barrier to physical intimacy, an individual should be funded to receive specialised supports that best address the needs of the individual.

3. Electricity – This is once again, an attempt to overly simplify the situation inevitably fails to account for the very real and valid impacts of many disabilities. For people with MS, high-level spinal cord injuries, and a significant volume of various neurological disorders, the individual is unable to thermo-regulate. As a result of this, they generally are required to be in an environment that is in the low 20’s Celsius day and night, all year round, or risk paying a heavy price that may involve a significant reduction of function, flares of disability-related symptoms, and even hospital admissions. In such cases, it is typical, that the individual has reverse cycle air-conditioning and that this runs 24/7, for most of the year. In such cases, not only is the initial cost of the purchase and installation of the air-conditioner/s inextricably disability-related, but so are the ongoing running and maintenance costs.

4. Holidays – Holidays are a normal, natural, healthy part of life and a part that statistics would indicate that many people living with disabilities seldom if ever get to experience. To argue that the scheme should not fund any costs associated with holidays or travel is again either ignorant or deliberately seeking to avoid honouring the scheme’s responsibility in funding those expenses that are directly attributable to the functional impact of a person’s disability and seeking to reduce the overall burden that disability places on a person’s life and their ability to experience the fullness that life has to offer. Take for example some very typical disability related expenses that may be relevant to a person having a holiday that would not be experienced by their non-disabled counterparts:

• Transport – Due to the nature of a person’s disability, it may not be possible for them to use the cheapest methods of travel or transport, instead having to opt for more expensive alternatives, this also fails to acknowledge that an individual with a disability may need to travel with one or even multiple support workers considering the length of travel, duration of stay, quantity of support needed while away and so forth. I addition to this, things as simple as a transfer from an airport to hotel and back again can be an order of magnitude more costly where one is unable to rely on or make use of mass public transport such as a bus shuttle service. And of course, this is before we acknowledge the fact that if an individual is unable for reasons associated with their disability to use public transport, this will of course remain true while on holiday and the increased transport costs associated with this cannot be ignored.

• Accommodation – not only are the practical implications of a person’s disability likely to mean that back packer’s and other bargain accommodation are not viable, if an individual needs to travel with one or even multiple support workers, there are also the accommodation costs associated with the support workers who are also legally entitledto have access to a bedroom and bathroom not shared by the participant.

• Daily Personal Support – This is perhaps the most obvious of all the disability-related expenses that can impact a person’s ability to have a holiday. If a person requires significant support at home, then not only will this remain true when on holiday, but it may significantly increase due to environmental factors (such as being in an unfamiliar environment and not having access to certain supports or equipment that exist in their normal routine when at home).

5. Cosmetic Procedures – While at first glance this may raise some eyebrows, pun very much intended, the reality is that some “cosmetic” procedures are perfectly valid

Disability Supports Funding

Two such examples are false nails which have for several people been formally recognised as an orthotic/prosthetic device that substantially reduces the functional impact of some disabilities.

The second example I wish to examine is hair removal services such as waxing, laser, and IPL hair removal. For a great many people who have a significant reduction in their ability to look after their own self-care as it relates to hygiene and cleanliness, the task of maintaining their pubic hair involves significant amounts of time, expense, frustration, and loss of dignity. On the one hand, an individual could be funded to go to a service that specialises in the long-term removal of unwanted hair via a variety of means (such as waxing, laser, and IPL) some of which may be more or less suitable to the individual needs of the person in question. The scheme can choose to acknowledge that a short-term cost is, in reality, a longer-term investment in good outcomes that seek to maximise the quality of life and minimize loss of independence and dignity while actively supporting a more normative practice consistent with the wider community, or conversely, it can choose to prioritize the false economy of funding a support worker to trim/shave the individual’s pubic region every couple of weeks. While the support worker may certainly be the cheaper option if we only consider a month, over the longer term, the more permanent options are not only more cost-effective but are likely to expose the individual to lower long-term risk of harm and abuse, this is likely to be especially true where continence is a factor, or the individual has a menstrual cycle.

6.Home and Vehicle Modifications, we recognize that disability is something that can touch anyone, at any time, without notice, and when it does, it often leaves their life forever changed and in a temporary state of disarray. We recognise that the best way to minimise the overall TCO to the scheme of that person’s funded supports over their lifetime is to ensure good quality of life for the individual, assisting them to build or maintain their functional capacity and independence for as long as is possible and in doing so, maximize their quality of life, and opportunities to engage in and be a contributing member of their community. We live in a time where we face a national housing shortage together with a national housing affordability crisis, surely, if good outcomes and lower long-term TCO are what are ultimately important in ensuring the long-term viability and health of the scheme, then it would seem rather obvious that it in the majority of cases, it is both significantly less

Disruptive to the individual if they can stay in their own home, it also allows them to maintain their connection to their local community, friends, family and so on which is likely to play a significant role in those good outcomes I spoke of earlier, not to mention that modifying an existing home or vehicle is in many cases likely to be significantly more cost-effective than forcing the individual to find a new home that at present due to a severe national shortage is simply unable to exist.

Likewise, a modified vehicle while a significant initial expense, will substantially improve the individual’s independence, and ability to engage in and contribute to their local community and thus, in doing so again substantially improve their quality of life and reduce disability-related isolation which as I will discuss later is arguably the single most relevant metric in determining the risk of harm. Funding the cost of a modified vehicle also removes the need to fund a lifetime of specialist transport which in the short term may appear to be the cheaper option, however, when one properly considers the cost of properly funded transport over the lifetime of a suitably modified vehicle, the initial outlay for the vehicle no longer looks so unreasonable, this is especially true when we consider the additional non-financial benefits come from greater independence, improved quality of life and improved access to and engagement with their local community, all of which can be directly linked to an overall long-term decrease in costs to the scheme elsewhere.

6. Jewellery – The first example that comes to mind is a medic alert bracelet, while not necessarily or automatically disability related, signals such as this can be especially important and relevant in a disability context for people who are non-verbal or who utilise alternative methods of communication, just one more clear example where a cut and dried prescriptive list fails to be fit for purpose.