Feedback on National Disability Insurance Scheme Amendment Bill - July 2024

Dea/blindness is a unique and isolating sensory disability resulting from the combination of both hearing and vision loss or impairment that significantly impacts communication, socialization, mobility and daily living.

The term ‘d/Deafblind’ refers to people who have some hearing and vision, as well as people who are completely deaf and blind. It is difficult to accurately state the incidence of deafblindness in the community due to the broadness of the classification and diversity of conditions the term captures. Based on data from the Survey of Disability, Ageing and Carers deep dive 2018 the number is thought to be around 200’000 although this is likely an underestimate. This likelihood is due to the fact that many people with dual sensory impairment do not identify as such and may not report this status and because the SDAC does not cover remote regions and thus does not reflect the high rates of sensory loss/es in First Nations communities.

The Dea/blind community is very diverse. Its members have varying degrees of vision and hearing impairment and come from diverse cultural backgrounds. Some live with multiple or complex disability.

Item 3 - Section 8 (paragraph (c) of the paragraph beginning ‘The National Disability Insurance Scheme comprises’)

These changes establish inclusion on the yet to be develop list of NDIS supports as the sole determining factor relating to the appropriateness of a support being funded under the NDIS.

This is troubling given that Deafblind people use an incredible array of mainstream and specialist supports and products that are frequently misunderstood by NOIA decision makers. Defining included supports as those that are reasonable and necessary allows for the definition of those terms to be made on an individual basis and related to individual functioning and environment/ circumstances (including location, workforce issues, product availability etc). An item such as a smartphone will likely be classed as an everyday item (along with other already flagged groups of items such as whitegoods) and not included as a support appropriately funded by the NDIS.

For a Deafblind person who uses Auslan and lives in a regional area with limited access to interpreters or other communication support, the ability to type notes as a form of in-person communication with those that don’t sign is often a vital communication strategy especially in times of emergency. It is the interpersonal and intrapersonal context in which the device is deployed that influences its status as being used for a disability related purpose or not . Given the historic lack of understanding among policy makers and NOIA

staff when it comes to deafblindness it is difficult to accept that arbitrary lists of appropriate and inappropriate supports/services will be detailed and nuanced enough to not inadvertently exclude much needed supports and services for Deafblind participants. DBA foresees ongoing instances of Deafblind people being denied the support they need because these needs and related supports are not adequately understood by decision makers and have not been considered when developing lists of appropriately funded supports.

It is difficult to understand how commensurate choice and control is maintained when this shift in approach to defining eligible supports allows for the reasonable and necessary budget to only be spent on supports that are listed as NDIS supports. Whilst line-by-line budgeting has been removed, assessing the appropriateness of NDIS funding for supports based on individual circumstances has also been removed and replaced with a list of included supports.

Item 14 - After section 9A Regarding proposed section 10:

The ability to declare limits on access to specific supports to specific classes of participants is troubling and does not accurately reflect the intersectional relationship between disability, health and individual functioning. Compartmentalizing supports in this way will also be difficult to apply to contexts of multiple disabilities or dual sensory loss and risks recreating the primary/secondary disability dichotomy that has caused so many issues for Deafblind participants since the scheme’s inception.

Under the proposed section 10 it is foreseeable that a person with deafblindness could be denied access to things like physiotherapy because they are a participant on the scheme due to a sensory disability and these services are restricted only to participants accessing the scheme for physical disabilities. However, the deafblind person may need physical therapies to treat neck and back issues that stem from constantly having to monitor the ground to facilitate safe movement and are exacerbated by their use of tactile (hand over hand) Auslan for communication. Restricting access to specific supports to specific classes of participants fundamentally misrepresents the mechanics of disability and will likely lead to more issues than it will solve.

Regarding the Minister’s required considerations before declaring a support in rules made for the purpose of subsection 10(1), DBA is less than confident that the minister of the day will be able to make determinations around what practical supports are required to effectively support and uphold UNCRPD rights in a range of deafblind contexts. We are also intrigued as to what the plan is to facilitate community and participant input into these lists

Item 17 – Paragraph 19(2)(b)

Regarding a participant that has had access revoked not being able to initiate another access request until a decision has been made on review:

The potential for blown out wait times for this is concerning. DBA has heard reports of participants missing their windows to appeal planning decisions because of a lack of timely response from the agency. This leads to plans “going live” that are not fit or purpose and ultimately to the participant being accused of over-utilisation if funds are exhausted before the plan review date. It is not difficult to imagine people going without support whilst they await the outcome of review decisions prior to being able to action another access request. When we’re talking about supports people rely on for their safety and basic human dignity any delay has the potential to be profoundly impactful.

Item 18 – Subsection 21(2)

The separation of support types seems to indicate a desire to create two classes of supports: those that are seen as lifelong needs related to an aspect of individual functioning that is unlikely to change, and those that fall more into the lane of individual capacity building that will reduce the need for other supports over time.

It is promising to see that it has been considered that certain participants may have need for both types of support however in the example given (Amena) there is a high likelihood that the intersecting and compounding nature of multiple complex disabilities will impact the perceived effectiveness of supports from an individual capacity building perspective. Early skills interventions that may have a strong evidence base around amount, frequency and timing of use in Autistic children may need to be applied and assessed differently due to the additional sensory issues the child is experiencing.

It is foreseeable that rules made around the provision of early intervention supports may not take into account he impacts of additional disability and could lead to participants being unable to access supports they need for the period or in the amounts they need them.

Item 25 - Section 27

The inclusion of matters that must not be taken into account is a new addition and is concerning in that it seems to point to a desire to compartmentalize support needs in

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unnatural ways that do not reflect the intersecting and compounding nature of things like disability and mental health.

These mechanisms could potentially be used to exclude, for example, mental health needs being factored into the functional capacity assessment of someone with a sensory disability despite the fact that their mental health issues may result directly from the experience of being disabled. In commenting on the connection between disability and health the Australian Institute of Health and Welfare stated: “Disability and health have a complex relationship – long-term health conditions might cause disability, and disability can contribute to health problems. The nature and extent of a person’s disability can also influence their health experiences. For example, it may limit their access to, and participation in, social and physical activities. Social, cultural and economic determinants of health can be of particular importance for people with disability.”

Item 30 - Subsection 30(2)

These amendments do not completely remove the possibility that participants could be asked to repeatedly prove their disability as engaging in a process designed to “determine the state of their functional capacity” could be seen as synonymous with proving their continued need for a specific support.

There is also scope for these powers to be used to determine efficacy of supports and whether they represent a necessary continued investment. Given the arbitrary separation of needs, disabilities and supports into classes that seems to be a recurrent theme of these amendments it is likely that erroneous determinations about the efficacy and necessity of supports can be made because these supports and the role they play in the participant’s life have not been considered holistically.

Subsection (3)(b)(ii) contains “undergo, whether or not at a particular place” and grants CEO powers to prescribe what assessment they want done, where it must take place and who is appropriately qualified, in their view, to conduct the assessment. This risks reinvigorating many of the potential pitfalls associated with previous plans to roll out independent assessments including disproportionately disadvantaging historically marginalised cohorts that many professionals know nothing about despite holding what in the eyes of many would constitute appropriate qualifications in disability or related fields.

Item 31 - At the end of Part 1 of Chapter 3

“Section 30A allows the CEO to request information from a participant, or another person, or request the participant undergo an assessment or examination and provide a report in the approved form to the CEO. The participant may choose the person from whom they obtain the report.”

Unless the CEO, using powers ascribed in (3)(b)(ii), determines the assessment must be done in a specific place which effectively removes participant choice over who provides the report. The same is true around leaving the CEO to make determinations about who is “appropriately qualified.” In the Deafblind context a support coordinator or social worker/case manager may have intimate knowledge of a person’s support needs but the CEO can require an Occupational Therapist compile necessary documents because, in their mind, an allied health qualification holds more weight than genuine history and rapport with a participant.

Item 36 – After section 32

“New section 32b provides that the Minister may determine by legislative instrument the classes of participants who are to receive new framework plans and the period within which the CEO must give a notice of the transition to each participant within that class…….These classes may be determined by reference to any identifiable characteristics such as age, location and types of supports they receive.”

This could be problematic for people with multiple disabilities and unique, diverse cohorts where diagnosis and disability type still do not indicate ‘typical’ support needs.

DBA is curious as to whether the approach to transition could result in people with similar needs being on old framework and new framework plans if the characteristic used to determine participant class is, for example, geographic location. This may intensify current lack of equity among participants with similar needs in different parts of the country.

Reference is made to the consultation provisions in the Legislation Act as a means of assuaging sector fears that much of what is being discussed in these amendments will be developed without authentic co-design and risks not being fit for purpose. The quoted section of the Legislation Act has been in operation for quite some time and previous inadequate consultations have taken place under the supposed protections of this Act. It leaves the door open for lack of consultation to be explained away by the rule maker and positions assessment of the adequacy of consultation with the rule maker as well. Without an independent assessment of the quality and sufficiency of consultation from the perspective of relevant stakeholders the protections implied by the existence of the Legislation Act seem overstated.

“Flexible funding will be provided to or in relation to a participant up to a certain amount. This change is based on the principle that people with disability know their own support needs and are best placed to determine how to meet those needs. This means that a participant may use flexible funds to acquire a range of supports that they need as a result of their impairment/s, provided those supports are appropriately funded by the NDIS. This gives participants a much higher level of choice and control around identifying and acquiring the supports that best meet their individual needs.”

Participants are being given the option to use their money flexibly on a narrow list of supports deemed reasonable by someone else. The efficacy and genuine flexibility of this funding depends entirely on the adequacy of the spectrum of NDIS supports included in yet- to-be-seen rules and lists. Applying the “principle that people with disability know their support needs and are best placed to determine how to meet those needs” requires more than giving them a choice over which of a limited number of predetermined supports they can spend their funds on. This feels akin to taking someone away from a buffet, giving them an aeroplane menu with 3 options to choose from and saying that because they still get to make a choice, that the experiences are comparable.

This section also uses ‘impairment’ and ‘disability’ interchangeably which fundamentally misrepresents the origin of certain participant’s support needs. The need for a sign language interpreter arises because of the lack of signing skills among people the sign language user wants to communicate with. Not because of a hearing impairment. If the need for the interpreter arose as a result of the impairment then the Deaf person’s support needs would remain the same when interacting with other Deaf people. It does not. The interpreter is required once those without fluency are required to be included in the conversation and thus the need can be seen to be driven by environmental deficit as much as by individual impairments.

“Stated supports are provided under a reasonable and necessary budget for specific high- cost items. Category A NDIS rules will prescribe supports that are stated support for participants or classes of participants. For example, high-cost assistive technology, home modifications and supported independent living may all be stated supports.”

DBA is concerned as to how this will be determined for classes of participants in communities that are incredibly diverse. This feels like it is trying to use a ‘typical support packages’ type of approach to group planning into standardised templates based on disability type (although as expressed earlier in the amendments any characteristic can potentially be used to group participants into classes). Even people with shared diagnosis (for example Usher syndrome) have totally different needs especially around equipment. It

is foreseeable that class structures like this recreate the current primary/secondary disability dichotomy that causes so many barriers for Deafblind participants.

“ This amendment will also assist in addressing sustainability pressures on the Scheme as intra-plan inflation is a key driver of Scheme costs and arises in situations where a participant is over-utilising their plan.“

Not entirely. We hear from Deafblind people that they are still receiving plans that are insufficient. This creates the illusion of over-utilisation when in fact it represents a chronic systemic failure of the Scheme and its staff to understand and effectively assess or respond to the needs of Deafblind people. These measures assume that all over-utilisation occurs as a result of participant mismanagement arising from a lack of skills and awareness. This is not the primary driver of over-utilisation and addressing only this component will not resolve the issue for many Deafblind participants.

“If the flexible funding amount for a funding period is not spend within that period, then subsection 32F(5) provides the next funding period will be increased by the excess amount that was not spent in the preceding period, that is the excess amount will ‘roll over’. This ensures that participants do not lose access to funds if they are not spent within a certain funding period. However, funding does not roll-over from the end of a plan into a new plan.”

This goes some way to addressing the instances of needed supports being cut due to under- utilisation of plan funds that occurs because of lack of support availability. The continued directive to give consideration to the effectiveness of previous plans in planning decisions does still leave scope for people to be denied funding for supports despite the lack of spend arising from workforce supply issues and not participant needs.

“New section 32H provides that the reasonable and necessary budget may specify that funding (either flexible funding or funding for a stated support) will only be provided where certain requirements are met.”

This section and the example requirements given have the potential to create problems in communities like the Deafblind community where there may only be one provider in the space. Stipulations like these assume a robust industry and infrastructure that allows people to shop around and utilize market pressures and competition to get better prices and services. Monopolies on service provision and thin markets in key support roles in the Deafblind space prevent this from happening. It is difficult to have confidence that those setting these requirements will have sufficient knowledge of the Deafblind community to judge whether said requirements are appropriate or achievable for this community.

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The question must also be asked: to what extent can participants have supports funded specifically for the purposes of complying with agency requirements? Can the amount of interpreter and CommGuide support required to go out and source 4 different quotes for a piece of AT be factored into someone’s plan? Are participants required to not only future predict the total support costs of working towards the goals in their plan but also the costs of complying with agency requirements?

“Section 32J provides a new Category A NDIS rule making power setting out requirements with which the CEO must comply, methods or criteria the CEO is to apply and matters that the CEO may, must or must not take into account in making a decision under 32F, 32G or 32H about a reasonable and necessary budget.”

The inclusion of consideration of what must not be taken into account in these rules is concerning. It seems to be placed as a mechanism to codify the push of certain responsibilities back to states and territories however it could perpetuate an erroneous belief that things like health, disability and identity can be compartmentalized. This false compartmentalization is in direct opposition to the ‘whole of person’ approach called for by the NDIS Review.

“Subsection 32K(2) provides that the Minister may, by legislative instrument, determine methods for working out the total funding amounts above. When making such a determination, the Minister must have regard to the need to ensure the financial stability of the NDIS as well as the principles set out in subsection 4(5), (9A) and (11) of the Act.”

The addition of ensuring the financial stability of the NDIS seems to provide an indication that these instruments will, at least in part, be designed to allocate plan budgets in-line with what the government of the day considers reasonable spend on the scheme, not a reflection of the actual needs of the participants in question. It also obfuscates one of the main drivers of cost of the scheme which is the inaccessibility and poor design of mainstream policy, spaces and programs.

Unless ministers in health, education and other relevant portfolios are also tasked with ensuring their decisions and policies have regard to the ongoing cost of supporting disabled people then including it here and here alone perpetuates the outdated medical model of disability. It reinforces the idea that the cost of supporting an individual is tied only to their individual capacities and not the status and capacity of the environment in which they operate.

For example, the continued refusal of Jobs and Skills Australia to take meaningful action to address the Auslan interpreting workforce crisis is a decision that is having a negative

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impact on the financial sustainability of the NDIS. Continued low numbers of practitioners means there is little competition and upward pressure on costs of services has been maintained. By increasing the pool of available interpreters Jobs and Skills Australia can assist downward pressure on costs by facilitating greater competition in the space and thus reducing one area of financial strain on the NDIS.

“The needs assessment tool (or tools) will be highly technical and developed in consultation with the disability sector and medical and professional experts, as well as relying on international learning and best practice. These instruments will be evidence based and it is expected the instruments will need to be changed and updated in accordance with experience from their use and other updates such as medical standards and advice. The determination may make different provision for different classes of participants. This approach is consistent with the recommendations of the NDIS Review that the needs-based approach to budget setting will prioritise evidence-based supports that will lead to a more predictable and manageable scheme.”

This and other references to scheme sustainability as being a recommended focus arising from the NDIS Review misrepresents the Review’s advice and position on the role scheme sustainability should play in informing decision making and the design of instruments.

The relevant section of the Review final report is titled “Sustainability as an outcome of our reforms, not the driver.” They go on to state: “We have looked beyond the NDIS. In our view you cannot improve the NDIS without fixing the ecosystem in which it sits. We believe a sustainable scheme to be an outcome of our reforms, not the driver. A person-centred, fairer NDIS, embedded in a balanced ecosystem of support that is easy to navigate and delivers high quality supports will result in a sustainable scheme. By improving the NDIS and the ecosystem around it, it is possible to get better outcomes for all people with disability in a more efficient and cost-effective way. All governments are responsible for the sustainability of the disability ecosystem. It is impossible for the NDIS to be sustainable without a commitment by governments to improve foundational supports outside the NDIS and make mainstream services more accessible and inclusive.”

As can be seen above, the Review did not recommend needs-based budgeting and evidence-based supports in isolation and they certainly don’t present the predictability and manageability they bring to the scheme as being the primary reason behind their recommendation.