Securing NDIS access for Deafblind participants (Participant experience) | External submission

Submission 665

DBA Submission: Securing the NDIS for future Generations.

Deafblind Australia (DBA) is the national peak representing all Deafblind people and those living with dual sensory loss/impairment.

Deafblindness 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. Many Deafblind people communicate using Australian Sign Language (Auslan) and/or spoken languages. However, there is an incredibly diverse array of alternative and augmented communication methods used by others including objects, pictures, body language, gesture, key word signs and braille.

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 Deafblind 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.

DBA welcomes this opportunity to contribute feedback on National Disability Insurance Scheme Amendment (securing the NDIS for future generations) Bill 2026.

This feedback was developed in response and makes reference to information provided in the explanatory memorandum. The concerns put forward are based on DBA’s perspectives on how what is proposed here will exacerbate and interact with current Agency practice and culture as relayed to us by Deafblind participants around the country.

A word on participant classes.

DBA and others in the Deafblind community have advocated since NDIS inception for Deafblind people to be accurately recorded as part of internal administrative data and

Submission 665

systems. At the time of writing, NDIA advice has been that there are no participants on the Scheme currently recorded using the ICD code for dual sensory impairment. This means that if participant classes were created today, there is not a single Deafblind person on the Scheme who would be placed in a class that accurately and holistically represents their needs. Given the proposed powers to make determinations for specific classes of supports and participants we are concerned that many Deafblind participants will be denied access to things they need and are entitled to access, based solely on historic administrative oversight that is yet to be corrected.

Schedule 1- Access and Planning Measures.

Part 1- Defining functional capacity.

The relative success or failure of the attempt to define functional capacity will rely extensively on how broadly “functioning” is defined, the degree to which environmental circumstances are considered in the definition and the suitability of any assessment tools/methods across different cohorts and especially in 3rd party mediated interactions. At present, DBA is not confident that the true extent of what is required to execute this is fully understood by the NDIA.

Justifying the proposed definition of functional capacity as a response to NDIS Review recommendation 3.1 neglects to wholly consider this recommendation. 3.1 also recommends that this definition be “agreed” and given this action’s further insistence on validating assessment methods with the groups with whom they are intended to be used it can be reasonably inferred that the Review was calling for this definition to be developed in consultation with community and not merely inserted into the Act.

3.1 also goes on to state that “Any assessment considered should take into account that disability can fluctuate over time, and based on the environment the person is in.” This has interesting implications for possible directives for environment to be specifically excluded from the assessment process. It also states the assessment should be delivered by the participant’s treating professional. If the Review is being cited as the foundation of all of these reforms, it would be appropriate to more holistically consider these recommendations and the spirit and intent of what is included in them.

Submission 665

The requirement to assess functional capacity by excluding personal and environmental circumstances to the greatest degree possible raises questions as to how this reconciles with the advice of 3.1 that “any assessment considered should take into account that disability can fluctuate over time, and based on the environment in which a person is in”. It is curious that the assessment must have regard to this but not the definition of the thing the assessment is supposed to measure. Someone’s ability to produce complex, abstract ideas in Auslan, for example, has absolutely no impact on their functional capacity if no-one in their environment uses Auslan. Being able to understand Auslan is also useless if none of the services you rely on produce information in this language. DBA has long maintained and relayed to Government the understanding that gathering information about someone’s disability related support needs cannot be achieved by examining or measuring their impairment alone.

Part 2- Limit unscheduled plan reassessments.

“Unnecessary reassessments and plan increases are often the result of a lack of clarity and appropriate controls around when plans should be reassessed.”

This is true, but they are also frequently a result of initial plans not being fit for purpose, and the review process being laborious, time consuming and inaccessible.

Any comprehensive effort to reduce the amount of unscheduled plan reassessments risks failing to deliver the intended outcome if nothing is done to address this driver.

Restricting plan reassessments to only instances where a significant, ongoing change is recognized will have interesting implications for things like end-of-life care. It is foreseeable that someone could be denied a reassessment due to changed support needs towards the end of their life if these changes cannot be classified as ‘ongoing’.

New subsection 48A(3) proposes to permit plan reassessments when there has been a significant, unanticipated and ongoing change in the participant’s living arrangements, education arrangements, work arrangements or network of informal supports. This is in recognition of the fact that these major changes can substantially impact a participant’s support needs. If a change in circumstances can trigger a plan reassessment because it is acknowledged to have the potential to “substantially affect a participant’s support needs” it is confusing why it cannot be considered during assessments of their functional capacity? This clearly outlines the influence environment can have on support needs and should support the consideration of environment when assessing support needs at any time, not just when

Submission 665

circumstances have changed. DBA has received information the PECQ is intended to capture all of this so it doesn’t need to be in the functional capacity assessment however there’s nothing legislating the use of the PECQ or how it is to be factored into the assessment of support needs. DBA believes strongly that there needs to be provision that legislates the consideration of environment in the calculation of support needs at some point.

The use of the word “unanticipated” creates the potential for 1 of the examples (Sophie) to be denied on the basis that whilst the change in circumstances is significant and impactful, it cannot be defined as unanticipated. You could foresee this being denied because her mother’s ageing is not unanticipated. If her mother passed away suddenly, maybe, but getting older and moving into care is something it could be argued she should have seen coming and prepared for. This concern is based on historic interpretations of legislation and operational guidelines by Agency staff that has led to decisions and advice that are in contravention of the spirit and intent of the Scheme.

Part 3- Strengthen link between an impairment need for support.

“….reasonable and necessary supports for a participant are confined to those needs which arise directly from impairments in relation to which the participant meets the disability requirements or early intervention requirements. Whether this is the case will depend on whether the impairment is the direct and immediate source, cause or origin of the need for support as opposed to a contributory cause of the need.”

The nature and specifics of an impairment in the Deafblind context can and will only ever constitute part of why a support is needed. The other part will always be determined by the environment. If a person needs an interpreter because they’re Deafblind, this need only takes shape when there’s no one around that knows how to sign. In both situations they’re just as Deafblind but their support needs are completely different in both circumstances. For people with sensory disabilities, a need or lack of need for support will always be the result of an equation that combines personal/bodily function with a set of environmental conditions.

The text slated for removal at Subsection 34(1)(note) appears to be one of the only mechanisms in the Act that compels those using it to consider disability in a way that aligns with how it truly functions as a social phenomenon. Removing this does not reduce ambiguity and will likely create more problems because it continues to misrepresent the operating mechanics of disability in ways that are confusing and illogical.

Submission 665

Part 4- Support determinations.

“Proposed new subsection 34A(3) will provide that in making a support determination, the Minister must consider the safety of participants. Important safety considerations include whether a reduction in funding for groups of supports could place participants at risk of neglect, crisis, or loss of essential functioning.”

DBA is concerned that this directive to consider safety is in opposition to the powers proposed for the Minister to set prices for supports that have been deemed necessary for essential functioning below the actual cost of providing said supports. If a participant has been assessed as needing a particular intensity or frequency of support in order to function, then providing funds below the cost of what they have been assessed as needing makes a loss of essential functioning unavoidable. Further protections are needed for those situations where limits on funding for a specific class or supports or participants could place said participants at risk.

Part 6- Reasonable and necessary supports.

“In old framework plans, participants receive reasonable and necessary supports. There is no definition of what is ‘reasonable’ or ‘necessary’, but only a list of principles-based criteria set out in subsection 34(1) of the Act. This has resulted in a high degree of discretion, subjectivity and lack of consistency in decision making by delegates of the CEO, tribunals and courts.”

Another way to phrase this would be that it has underpinned the creation of truly person-centred plans and has allowed supports to be provided in ways that authentically and holistically address someone’s disability. This seems well within the scope of parliament’s original intent.

Given that disability is interactively generated it would make sense that outcomes/support needs would appear inconsistent even across shared diagnoses. Principles-based criteria is not a misstep but the only effective way to administer a scheme like the NDIS across such a broad spectrum of functioning without unfairly penalizing people or making the process too administratively burdensome.

“Amendments made in this Part create stronger parameters around what is considered reasonable and necessary under the NDIS, including reframing what it means for a support to be reasonable. What is reasonable should be determined in

Submission 665

part by what is reasonable to expect the Scheme to fund having regard to consistency across government funded social service systems and within available resources (consistent with Article 2 of the Convention on the Rights of Persons with Disability). In some cases, what is reasonable to fund may be less than the actual cost of a support. It is a different concept to the prevailing one, which is often what participants expect to receive from the NDIS. This change is relevant to both old framework and new framework plans.”

Article 2 of the CRPD states: “Reasonable accommodation means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.”

The above definition does not compel countries to have regard to consistency across systems nor does it make declarative statement about keeping within available resources. It defines reasonability via proportionality. The assessment of whether the cost of something is reasonable is about comparing that cost to the conditions that create the need for the modification, not to what is available in terms of funding.

“Amendments made by this Part also incorporate consideration of Scheme sustainability more directly into decision making. This is achieved through amendments to the objects and principles of the Act to embed Scheme sustainability considerations, to make sure the NDIS remains viable, effective and affordable. “

These amendments will also have the effect of giving delegates a blank cheque to reject any supports that are deemed too expensive, even if they are directly linked to disability related needs.

The cost of supporting and including disabled people is a direct reflection of the inaccessibility of mainstream services, systems and spaces. Investing in making those things more accessible is the only way to make sure the NDIS remains viable, effective and affordable. It is in direct contravention of the CRPD to deny people access to services based on cost that they only require because mainstream services, systems and spaces are unable to include them without additional supports and equipment.

“This Part also strengthens the considerations the CEO must make when determining whether a support is ‘reasonable and necessary’ by inserting specific value for money

Submission 665

considerations, effective and beneficial considerations, and family support considerations. These are currently factors in the Supports for Participants rules but will be strengthened by inclusion in the primary legislation.”

The value for money considerations are redundant if they’re not comparing like with like. The combination of these considerations and the hyper fixation on impairment as the single origin of disabling experiences leads to obfuscation of what supports address and how they function which has strong implications for considerations such as value for money and effective and beneficial. DBA is deeply concerned by current Agency practice in which different supports are grouped together in unnatural ways that do not accurately take into account why the support is needed or how it functions leading to value and benefit equations that do not compare like with like.

“Finally, this Part provides for a legislative instrument that allows the Minister to set maximum funding amounts, intensity or ratios for individual supports or classes of supports. These funding amounts can be made with reference to a certain class of participants to make sure the limitations are appropriately targeted. This instrument will be based on peer reviewed and published evidence about what level and kind of support is appropriate and beneficial for participants.”

DBA is deeply concerned about the impacts of this instrument on historically marginalised and underrepresented cohorts of people with disability. Deafblind people are rarely the subject of academic research particularly around the impacts of various types and intensity of support. Safeguards must be put in place to ensure limits set via this instrument are appropriate for and do not disproportionately disadvantage cohorts that are consistently absent from academic literature.

Regarding proposed Subsection 4(5) and (11): This paves the way for a codified list of supports to be legislated as the Scheme’s responsibility thus rendering anything outside those lists the responsibility of as yet unrealised state level service systems. This is profoundly troubling for cohorts that are not understood and barely represented in discussions about creating lists of this kind. Previous attempts to establish lists in this way (such as the ‘in’ and ‘out’ list approach to everyday items) were unsuccessful and created abundant confusion among participants and the sector more broadly.

This feels like a profound shift in approach. The only thing “individual” that will be left after this is the fact that each participant will receive a calculation as to what percentage of an already approved pool of supports and funds they are able to access. Rather than adjusting government spend to match the needs of people in the

Submission 665

community this could have the effect of relegating disabled people to lives that have a glass ceiling placed on them at the hands of the government of the day. DBA feels that this is no longer preserving the NDIS, it is transforming it into something that is fundamentally different in its approach and its likely impact.

“Item 65 inserts a new section 17B, dealing with principles relating to Scheme sustainability. These principles form a key part of ensuring that decisions in relation to participants and their plans are taken in the context of ensuring that the Scheme can remain sustainable into the future.”

Elements described as a “key part” of decision making require accompanying advice on how these principles and objects are to be balanced when they conflict with one another.. DBA is concerned that this part will be taken as primary by delegates and will be the determining factor in funding decisions moving forward.

“the desirability of supporting communities to respond to the goals and needs of participants. The NDIS was never designed to replace ordinary community supports which are critical, as strong community capability helps participants achieve their goals more sustainably and inclusively. In addition, participants often do better when informal supports, including family, peers, clubs, employers and local services play a role alongside funded supports.”

The relevance of a community’s desire to include someone on their actual support needs is not clearly understood by DBA. Most communities, especially local councils, would be very desirous of including people with disabilities whilst remaining completely incapable of doing so in a practical sense. It is therefore unclear as to why this desirability needs to be considered in an assessment of someone’s disability related support needs.

“…financial sustainability of the Scheme, having regard to reports of the Scheme actuary under Part 6A of Chapter 6. This is achieved by only providing supports that are necessary, effective and good value and by preferring options that achieve the

participant’s  goals  at  the  lowest reasonable  cost  while  still being  safe and

appropriate.”

Balancing cost with appropriateness requires staff to have a level of nuanced

knowledge and  experience  that  current Agency  practice does not seem  to

demonstrate. For example, we are currently seeing access to Auslan interpreting being denied in favour of audiology services because they are both seen to be supports that address

Submission 665

hearing function and one appears significantly cheaper than the other. However, these supports do not address the same impacts of a sensory impairment and it is not appropriate to assess their relative value or benefit in relation to each other.

“New subsection 33(2EA) will provide that a determination made under subsection 33(2E) may specify a maximum amount of funding for supports, maximum intensity for provision of support or a maximum ratio of worker to participant for provision of supports. This can be determined for a support or class of supports in relation to participants generally or a class of participants.”

The process that will be enabled here is concerning for cohorts that fall between the cracks of service systems in the way that Deafblind people frequently do. The potential for what someone can access, how frequently they can access it and how much they can spend on it being handed down by means of legislation that does not consider or relate to their individual circumstances has a huge potential for unintended negative outcomes.

“…regardless of any other considerations. Maximum intensity for the provision of a support refers to the frequency and/or duration for the provision of support. For example, the maximum intensity for a participant in a specified class may be 12 hours per year of a particular kind of therapy support.”

The potential for a maximum per annum allocation for support types to be set without consideration of circumstances could disproportionately impact participants in regional/remote areas and those who are navigating thin markets for support. This could lead to a maximum allocation for Auslan interpreting being set for all participants that use Auslan regardless of where they live, whether they require specialised interpreting and whether or not they have family and informal networks that can communicate with them.

This seems to be built on the idea that communities of diagnosis have consistent support needs. This is rarely if ever the case because, the support needs are as influenced by environmental conditions as they are by the impairments that result from a particular diagnosis.

“A support determination is in effect which sets a maximum intensity for therapy supports, which is 25 hours per discipline of therapy. The NDIS planner determines the 30 hours per discipline is reasonable and necessary for Marco and includes this in his NDIS plan, however in line with the support determination, Marco is able to

Submission 665

receive a maximum of 25 hours per discipline. As Marco accesses three different types of allied health supports, this would equate to 75 hours in total.”

Depending on how widely these support determinations are used this could almost entirely remove the need for any kind of functional assessment. What is the point of determining a reasonable and necessary amount of support and then underfunding that? If it is deemed necessary, how is the shortfall supposed to be made up? This could have the effect of erasing the consistency sought by these reforms as the ability to be sufficiently supported would depend heavily on people’s economic circumstances and their subsequent ability to cover the gap between what they have been assessed as needing and what they have been funded to access.

“Proposed new subsection 34(1A) will provide that when deciding whether a support represents value for money, the CEO must consider whether comparable supports are available at a lower cost than the supports, and if they are, consider whether one of those lower cost comparable supports would represent better value for money than the support.”

As previously mentioned it is vital that supports being compared actually serve the same function and address the same need. At present this consideration is applied inaccurately by delegates and DBA is concerned this practice will worsen under this proposed change.

 “The CEO may decide they are not satisfied that a support is, or is likely to be, effective and beneficial if there is limited or no published or peer reviewed evidence, even if there is evidence of effectiveness of the support either generally or for the participant in particular.”

This is really concerning as it creates the power for academic evidence, or lack thereof, to trump everything else in the assessment of benefit. DBA feels there are greater protections required for people for whom these studies don’t exist due to the historic underrepresentation and marginalization of certain communities.

Part 7- Plan suspensions etc.

“Currently, the CEO is unable to suspend a participant’s plan if a participant cannot be contacted or fails or refuses to respond to requests for information.”

This limitation is necessary and beneficial at present given Agency staff frequently ignore participant advice/requests regarding to which methods of contact are

Submission 665

accessible to them. If a Deafblind person that has repeatedly asked not to be called on the phone because they cannot use it is not responding to repeated calls from the call centre, then it is a positive protection that their plan cannot be suspended as a result of this.

“This amendment allows the CEO to revoke the status of participants where they are uncontactable, but ensures that there are appropriate safeguards in place. The CEO is still required to make an active decision to revoke a participant’s status as a participant and provide notice to the participant of the day on which the revocation is to take effect (see item 81).”

DBA believes this is not sufficient safeguarding. There needs to be an explicit reference made that the contact attempts must be via the preferred contact method outlined by the participant. Without this, there is a real risk of people having their status revoked because they don’t engage with the Agency via a means of communication that is inaccessible to them. The over reliance on voice telephony to date has been distressing and has the potential to wreak much wider havoc if these new powers are introduced.

“A reasonable attempt would include that a written notice was provided to the participant and that the notice was received (for example, it went to the correct address), there was enough time granted for the participant to gather the requested information and reports and the participant was able to respond (for example, they were not in hospital or otherwise incapacitated when the request was attempted). A note would also be added to explain to the reader that suspension is a reviewable decision under section 99 of the Act.”

DBA supports this decision remaining reviewable however there are carve outs necessary to ensure some participants are not disproportionately disadvantaged. Not everyone who receives these notices faces the same barriers to responding or engaging with these processes. Additional time must be allotted for those requiring translating and interpreting services or alternative document formats, particularly those using languages for which supply of these supports is extremely limited.

“The CEO may elect to remove the suspension because in contacting the Agency, the participant would have provided the required information or reports. Alternatively, the participant may still be refusing to supply the requested information or reports, in which case a continued suspension would be appropriate as the participant has been fully appraised of what is required of them but continues to refuse.”

Submission 665

A participant may be unable to supply the requested reports because they require engagement with clinical services that must be supported by a 3rd party professional such as an interpreter whose services are in incredibly short supply. They may not be able to book the supports they need to supply the requested information within a given time frame and this is not something that should be punished especially by the suspension of their plan.

“The Agency has attempted to contact Cyrus to arrange the reassessment multiple times over several weeks using his preferred contact method of email.”

The Agency needs to be specifically directed to do this. Agency practice to date leaves DBA with very little confidence they can be trusted to do this and in something as high-stakes as revoking someone’s access, this can’t be left up to chance or individual discretion.

Part 8- Tightening meaning of permanence to reduce access where an impairment can be treated.

“It inserts a new subsection 24(5), which provides that an impairment or impairments are not permanent or likely to be permanent unless a person has undertaken all appropriate treatment for an impairment or impairments. Further, an impairment cannot be found to be permanent if there is any other treatment which is likely to materially improve, reverse, or alleviate the impact of the impairment or impairments. In this context, materially means noticeably or significantly.”

DBA is troubled by the potential of this change, in combination with current trends in Agency practice, to deny participants access to sign language supports until they have undergone surgical interventions that proved ineffectual. We are seeing people with funding in their plans for cochlear implants and audiology being denied access to interpreters and told instead to use these funds. Access to sign language is a fundamental human right and one that is explicitly stated throughout the CRPD. The enjoyment of this right should never be contingent upon failed surgical options. This change has the potential to be used to limit people’s access to services based on how far they are willing to go to normalize themselves and is in complete contravention of both the spirit and intent of the CRPD and the original goals of the NDIS.

“The second note acknowledges some permanent impairments require ongoing treatment to maintain a person’s functional capacity. The purpose of this note is to ensure the CEO considers circumstances where ongoing treatment for permanent

Submission 665

impairments is appropriate. For example some people may seek access to the NDIS with impairments that are likely to require ongoing clinical care, such as impairments attributable to psychosocial disability or degenerative conditions. This note makes it clear that a need for ongoing treatment to maintain a level of functional capacity (that is still substantially reduced functional capacity) is not a barrier to access the

NDIS.”

DBA wishes to clarify that ‘treatment’ is not the only ongoing intervention that may be required to maintain a person’s functional capacity. Sign language services such as Auslan interpreters are necessary to maintain someone’s functional capacity in a world that largely doesn’t use this language.

“Proposed new subsection 25A(1) provides that appropriate treatment for a person’s impairment or impairments is treatment that is evidence based, is regularly undertaken in Australia and can reliably be expected to improve, reverse or alleviate the impact of the impairment or impairments.”

DBA is concerned about how an assessment of appropriate treatments would apply to a procedure such as cochlear implantation.

The effectiveness of these varies wildly from person to person and despite working for some can neither be seen to improve, reverse or alleviate the impact of hearing impairment in many others. It doesn’t make someone hear and in many cases it actually makes the person rely on a more inconsistent and arduous communication method (lip reading and speaking) as opposed to signing.

“Treatment may be appropriate treatment for a person’s impairment or impairments regardless of whether the person’s individual circumstances restrict the person from accessing the treatment. A person’s personal and environmental circumstances, including financial and geographical circumstances, are not relevant in considering whether a person has undertaken all appropriate treatment. This is because ensuring people with disability have access to mainstream services, regardless of their circumstances, is the responsibility of all mainstream support systems.”

There is significant potential for people in regional and remote areas and those from low socio-economic backgrounds to be adversely and disproportionately impacted by this change.

Submission 665

Schedule 2- Fraud and Integrity Measures.

“Fraud and noncompliance have a direct and devastating impact on the lives of participants and their families, often leaving them without the means to cover every day supports that enable their basic human rights.”

This statement positions the lack of means to cover every day supports as contributing to a denial of basic human rights. The question must then be asked: Doesn’t removing or limiting these supports without ensuring there’s adequate state/territory supports (actual, established systems, not ideas) to replace them also equate to a denial of basic human rights? Doesn’t funding these supports below the actual cost of providing them similarly disable basic human rights?

“Robust and enforceable powers that have a strong focus on strengthening the NDIS regulatory landscape will deter provider noncompliance, poor and sharp practice while encouraging the delivery of high quality supports and services.”

These powers will contribute to this but they cannot do this in isolation. They go some of the way to deterring provider noncompliance, poor and sharp practices but we have observed historically that they do not encourage the delivery of high-quality supports and services. The latter requires extensive market stewardship and investment that has not materialized to date.

“The Agency has identified smaller plan management providers are more likely to exhibit risk factors for conflicts of interest, collusion, fraud and poor record-keeping.”

These small providers are also more likely to exhibit skills, knowledge and experience in supporting historically marginalized and underrepresented cohorts. Remember that when it comes to smaller, more complex cohorts that perceived conflicts of interest are often an unavoidable consequence of thin markets.

Part 1- Registration of NDIS Providers.

We have heard from people in regional areas of genuine concern that mandatory registration and compliance activities will drive some independent players out of an already incredibly thin market. In an area such as deafblindness this is a real concern as the skills, knowledge and experience of these staff cannot be easily replaced.

Part 2- Civil Penalties and Regulatory Powers.

Submission 665

“These new civil penalties cover a range of matters, including: acquittal of NDIS amounts, requirements to provide information, privacy offences, provision of fraudulent information, failure to comply with CEO requirements, unauthorised use and disclosure, and soliciting or offering to supply, protected Agency information. These new civil penalty provisions are intended to deter providers and individuals from engaging in unlawful and non-compliant conduct by imposing financial penalties.”

Financial penalties being issued for failure to comply with a requirement to provide information is deeply concerning given the established culture of not respecting people’s access and communication preferences/needs.

In response to the new roles and increased powers proposed for the Agency under this Bill: The amount of power being given to the Agency is deeply worrying given their historic struggle to accurately record someone’s disability or respond appropriately to their communication needs. Given the lack of understanding of Deafblind people evident in Agency practice to date it is difficult not to imagine that these powers will be erroneously applied in the Deafblind context and lead to significantly poorer outcomes for Deafblind participants.

Part 3- Information Gathering Powers.

“New subsection 54(4) will provide that the notice given under section 54 may also require a person to give information by appearing before a specified Agency officer to answer questions. The notice must also specify a time and place at which the person is to appear, which must be at least 14 days after the notice is given.”

Not all participants will be able to apply with these directives equally. This change could disproportionately impact rural and remote participants, people with impaired mobility and those that require human support for mobility and/or communication that must be drawn from thin markets.

Part 6- Registered plan management providers.

“Amendments made by this Part would reduce the size of the plan management market by limiting registered plan management providers to only those with a deed of arrangement in place with the Agency.”

Submission 665

DBA is concerned this could see this service being restricted to a small number of commissioned providers and local knowledge/connections being lost in the process particularly for participants in regional and remote areas or those with highly complex support needs.

Schedule 3- Governance Arrangements.

“…automating certain administrative actions in a safe, transparent and accountable way can support more timely and efficient decision making.”

Whilst efficiency is an understandable administrative goal it must not be pursued at the expense of accuracy. Automated decision making is deeply concerning for people in lesser-understood cohorts, such as the Deafblind community, because their needs are rarely, if ever, considered in the design of such automations.

Part 1- Decision making on pricing.

“Amendments made in this Part would provide the Minister with the power to make a pricing determination. The pricing determination would set out the maximum amount, or the method to determine the maximum amount, for the acquisition or provision of an NDIS support or class of NDIS supports.”

It is vital that public consultation, interdepartmental consultations, data and market analysis are essential components of these determinations.

Given how little the market realities around certain support types are understood by policy makers there is a huge potential for these determinations to be made on the basis of administrative and Scheme sustainability concerns even if they lead to determinations that are incongruous with actual cost of services.

This and other proposed amendments seem to point to a troubling desire for the NDIS to be funded with a fixed annual amount that is based on the budget priorities of the government of the day that is then to be distributed among participants with little regard to whether it meets their needs or not. In essence, it seems there is a transition taking place away from the NDIS providing support to merely contributing to that provision.

Submission 665

“Subsection 45C(2) would provide that the determination would only apply to the provision or acquisition of supports if funding for those supports are managed by either a registered plan management provider or the Agency. This recognises that self-managed participants, as informed consumers, are empowered to make trade offs within their NDIS budget and can elect to pay prices for supports above the maximum limit with the knowledge that this would reduce the volume of supports they could otherwise purchase.”

This makes the assumption that anyone who is plan-managed or Agency-managed is not an “informed consumer”. This glosses over the inaccessibility of language and systems around the Scheme that lead many to use plan-management services despite being informed, knowledgeable consumers. The idea that someone who can’t navigate the NDIS payment systems is immediately incapable of understanding their support needs is inaccurate.

Statement of compatibility with human rights.

“The Bill engages the foundational principles of the CRPD by implementing measures that protect and preserve the capacity of the NDIS to deliver supports to people with permanent and significant disability and for future generations who will rely on it.”

The foundational principles of the CRPD are:

Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons
Non-discrimination
Full and effective participation and inclusion in society
Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
Equality of opportunity
Accessibility
Equality between men and women
Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities

DBA struggles to see how explicitly removing the responsibility of the Scheme to provide supports and instead moving to a model of budget setting almost entirely

Submission 665

directed by Scheme sustainability and administrative considerations is in-line with these fundamental principles.

What is proposed in these amendments does not protect or preserve the capacity of the Scheme to deliver supports but merely perpetuates its ability to contribute to their delivery, to whatever degree the government of the day deems appropriate. Setting pricing, intensity, access and permissible types of support based on anything other than a response to a person with disability’s unique needs and circumstances is in direct contravention of the foundational principles of the CRPD.

“These provisions will make way for the implementation of a standardised, evidence based assessment of a person’s functional capacity that impacts their day-to-day living, moving away from the current approach which relies on diagnosis. The implementation of these measures in the Bill will therefore ensure fairer, more consistent and sustainable assessment outcomes, resulting in equitable access to the Scheme and thereby promoting the principles of accessibility and equality under the

CRPD.”

Accessibility as a principle in the CRPD is founded on the philosophical understanding that disability is created and exacerbated by environmental barriers including those in the physical/built environment, information and communication, transportation, attitudinal and social, institutional and systemic barriers. This Bill, along with many other reforms currently in development, explicitly directs attention away from these considerations during process such as assessing functional capacity or determining support needs. The removal of diagnosis lists is positive only in as much as it represents a move away from the outdated and flawed medical model of disability. However, what this Bill and other reforms proposes constitutes a rebranded medical model as it attempts to position impairment as the sole source of limits to functional capacity and presents the impact of environmental and contextual barriers as somehow separate from disability.

“Article 4(3) of the CRPD seeks to ensure consultation with, and active involvement of, persons with disabilities through their representative organisations, in the development, implementation and monitoring of legislation and policies that concern them. Notably, Article 4(3) does not require unanimity or agreement from all affected persons. The critical concern is whether legislative changes and policies are developed and implemented through meaningful consultation with the disability community, rather than via unilateral decision making.”

Submission 665

DBA understands that unanimity or agreement from all affected persons is not required in order for consultation to be sufficient and meaningful. We are concerned however that the repeated delay or absence of consultation materials and pathways that utilize Auslan is having a significant impact on the degree to which this consultation can be considered meaningful. To delay the provision of these materials without a commensurate extension of time to respond for those who need them is to disproportionately exclude a specific cohort based on their access needs and severely impacts the degree to which this process can be said to be compatible with Article 4(3).

Article 12, 15, 17 and 25 of the CRPD combine to protect bodily autonomy by ensuring individuals with disabilities have the right to inherent dignity, personal liberty, and freedom from non-consensual medical or physical interference, including forced sterilisations, forced treatments and unwarranted institutionalisation.

DBA struggles to understand how the approach to assessing permanence of disability proposed in this Bill upholds these rights.

Gatekeeping access to services behind surgical or other therapeutic procedures could have the effect of forcing people to compromise these rights in order to satisfy the legislative requirement that all available therapies have been attempted to remedy an impairment.

We are already seeing Deafblind people being told that their access to Auslan supports is limited by their failure to engage with audiology and cochlear implant services and it is hard to see how this practice wouldn’t become more widespread under the amendments proposed in this Bill.

“The Bill will necessarily limit the practical benefit of the NDIS for some individuals by excluding them from accessing the Scheme under tighter eligibility and access criteria. The objective of the limitation is to address substantial concerns regarding the ongoing sustainability and equity of the NDIS. Participant numbers have grown from an original design estimate of approximately 410,000 to around 760,000. If left unchecked, increasing participant numbers and expenditure threaten the Scheme’s long term viability. Existing legislative settings have not sufficiently addressed these issues, as past reforms have been unable to slow growth or correct structural incentives that draw people into the Scheme, irrespective of functional need.”

Submission 665

The idea that capping the size of the Scheme is the only way to ensure it remains sustainable is disingenuous. It costs a lot of money to include people with disabilities because mainstream spaces, systems and services are inaccessible.

Also, including people and supporting them to live independent lives is a lot more expensive than putting them in institutions which is a further consequence of an inaccessible mainstream.

The question must be asked: is the goal simply to have an NDIS in perpetuity regardless of whether it’s effective, or is it to improve outcomes for people with disabilities? What is the point of maintaining a Scheme that cannot fund the total cost of a support, or that provides funds to be spent on a workforce that doesn’t exist?

If the number of people that need these supports and the intensity and frequency with which they access them is beyond what was envisioned, that is an indicator that initial projections were flawed and short sighted. It is not necessarily evidence that there are thousands of people on the Scheme that should not be there. In the same way that we discovered many more stars once we developed telescopes, the NDIS and commensurate improvements to diagnostic process in a range of areas has lifted the curtain on the true prevalence of disability across our society.

Adjusting to this new reality and ensuring that people are supported to live inclusive, meaningful lives and to be involved in and contribute to their communities requires much more than simply shutting the gate on the NDIS and pushing as much responsibility as possible back on to state and territory governments.

“Changes to access and eligibility requirements introduced by the Bill will mean that some people with disability may need to seek supports outside the NDIS such as community-based supports and mainstream service systems. To this end, the Australian Government and all states and territories have committed to a National Agreement on Foundational Supports. These supports will be delivered outside of the NDIS and include early intervention supports for children (i.e. Thriving Kids) and may include other supports to be agreed between the Australian Government and state and territory governments as part of the National Agreement. This broader ecosystem of supports is consistent with the CRPD’s emphasis on adopting all appropriate measures to ensure the promotion of human rights of persons with disabilities. In this context, progressive realisation is achieved by extending disability related supports beyond the NDIS and reducing over reliance on a single scheme that can be met more appropriately and sustainably elsewhere.”

Submission 665

The CRPD emphasis is about broadly improving the accessibility of mainstream services, systems and spaces. It is not about having a patchwork of dedicated, segregated services funded by different levels of government. This is a crucial component of realising guiding principles 1-6.

Adopting all appropriate measures to ensure the promotion of human rights of persons with disabilities would, at a minimum, involve looking at alternative ways of funding the amount of need present in the Scheme and/or reducing reliance on supports via skills and capability uplifts in mainstream services.

It does not mean establishing administrative and fiscal efficiencies across the only current source of dedicated disability funding that render it virtually ineffective in providing the outcomes it was established to produce, simply so the Scheme can exist in perpetuity in some version regardless of what it achieves.