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Speech Pathology Australia

Speech Pathology Australia’s submission to the Joint Standing Committee on the National Disability Insurance Scheme’s Consultation:

‘The capability and culture of the NDIA’

16 December 2022

The Speech Pathology Association of Australia Limited ABN 17 008 393 440

Ms Libby Coker MP
Chair,
Joint Standing Committee on the National Disability Insurance Scheme
Sent electronically: ndis.joint@aph.gov.au

Table of Contents

• Introduction ……………………………………….. 4

  • About Speech Pathology Australia ………………….. 4
  • About communication disability …………………. 4
  • Communicative participation ……………………….. 5
  • Communication access ……………………………. 5

• Culture and Capability of the NDSI: …………… 6

  1. Issues with culture …………………………………………………… 6

  2. Issues with capability ……………………………………………. 14

• Recommendations …………………………………….. 20

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Introduction

Speech Pathology Australia (the Association) welcomes the opportunity to provide feedback to the Joint Standing Committee’s inquiry. We have structured our feedback regarding issues with culture and capability that are ongoing within the scheme and provide examples from our members where applicable/appropriate. We preface our comments with some background information on communication disability, communication access, and the role of speech pathologists.

About Speech Pathology Australia

Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing over 13,000 members. Speech pathology is a self-regulated health profession through Certified Practising Speech Pathologist (CPSP) membership of Speech Pathology Australia. The CPSP credential is recognised as a requirement for approved provider status under a range of government funding programs including the NDIS.

As the national body regulating the quality and safety of speech pathology practice in Australia, Speech Pathology Australia is well placed to monitor and progress workforce developments and initiatives. The Association also manages the formal complaints process for the profession and can, if necessary, place sanctions on practice for any member who is demonstrated to contravene the Association’s Code of Ethics.

The Role of Speech Pathologists

Speech pathologists work to give people with disability a voice and connect with others in an accessible and meaningful way, asist in teaching the social communication skills required to participate in different environments, and reduce the impact of swallowing or feeding difficulties experienced by individuals and their families or support networks across the lifespan and all life activities.

Speech pathologists are the only professionals with the knowledge and skills required to comprehensively assess the core communication, speech, language, social pragmatic and eating and drinking difficulties associated with disability. The speech pathology assessment process involves multiple assessment sessions as the speech pathologist observes and assesses the individual in a range of contexts (for example, clinic, home and/or educational setting) and with a range of communication partners (e.g., family, peers or strangers). This will often include a standardised assessment and a comprehensive report addressing all areas of communication and eating/drinking.

About Communication Disability

The Australian Bureau of Statistics’ 2015 Survey of Disability, Ageing and Carers (SDAC), estimated that 1.2 million Australians had some level of communication disability, ranging from those who function without difficulty in communicating every day but who use a communication aid, to those who cannot understand or be understood at all. Some people have problems with their speech, language and communication that are permanent and impact on their functioning in everyday life.

Difficulties in speech, language, fluency, voice, and social communication can occur in isolation or the person may have difficulties in more than one area and can negatively affect an individual’s academic participation and achievement, employment opportunities, mental health, social participation, ability to develop relationships, and overall quality of life.

Communication Disabilities

Communication disabilities can arise from a range of conditions that may be present from birth (e.g., Down Syndrome or Autism), emerge during early childhood (e.g., Developmental Language Disorder, stuttering, severe speech sound disorder), or during adult years (e.g., traumatic brain injury, stroke and head/neck cancers, neurodegenerative disorders such as Motor Neurone Disease) or be present in the elderly (e.g., dementia, Alzheimer’s disease, Parkinson’s disease). The prevalence and complexity of these disorders increase with age as both communication and swallowing functions are vulnerable to the natural ageing process; therefore, with an ageing population, prevalence and subsequent demand for supports will increase.

Communicative participation

Communicative participation can be defined as ‘taking part in life situations where knowledge, information, ideas or feelings are exchanged’2 and measured by the ability to successfully send and receive messages with all communication partners and in all contexts in which communication occurs.

Communicative participation may take the form of speaking, listening, reading, writing, or nonverbal means of communication3 and may take place for a defined social goal (e.g., establishing relationships), for a function/role (e.g., job-related), and/or in a particular context (e.g., in a restaurant or government service agency such as Centrelink).

Communication access

Communication access can be simply defined as being ‘when everyone can get their message across’. It is similar to the concept of providing ‘kerb cuts’ for communication. Kerb cuts make it possible for people who are in wheelchairs to access their physical environment. Similar to mobility access, communication access involves the provision of the necessary environmental supports for people with communication disability to access the community and mainstream services by being able to communicate effectively. In the same way kerb cuts improve physical access for everyone, activities to promote communication access for people with communication disability can also benefit a range of other people who have difficulties with spoken or written communication (such as people with English as a second language and people with low literacy).

Communication access is a prerequisite for participation in our communities by people with communication disabilities. Supports for communication access and participation are provided by, under the direction of, or with input from speech pathologists, and draw on the knowledge and theoretical frameworks for the profession, including the World Health Organisation’s International Classification of Functioning, Disability and Health. Communication accessible environments are critical if individuals with communication disability are to engage in and use mainstream services and to participate in the community, education and employment sectors.

2 Eadie TL, Yorkston KM, Klasner ER, Dudgeon BJ, Deitz JC, Baylor CR, Miller RM, Amtmann D. Measuring communicative participation: a review of self-report instruments in speech-language pathology. Am J Speech Lang Pathol. 2006 Nov; 15(4):307-20. 3 Eadie T. et al, Measuring Communicative Participation: A Review of Self-Report Instruments in Speech-Language Pathology, Am J Speech Lang Pathol. 2006 Nov; 15(4): 307–320

Capability and Culture of the NDIS:

Issues With Culture

Ableism

Throughout Australian culture, including within the Scheme, ableism is a significant issue that affects the experiences and interactions of people with disability on a frequent basis.

Ableism can be defined as the discrimination or prejudice against people who have disabilities. It can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or oppression on a more systemic level. It also has a flow-on effect as frequently able-bodied people become the gatekeepers, resulting in barriers being experienced regarding even basic every day activities that might be considered a human right. Therefore, the attitudes and biases that able bodied people have towards people with disability can have dramatic impacts, even if these are unconscious or unintentional.

Ableism contributes to the overall dehumanisation of people with disability. They might be seen to be helpless, or objects that have things done to and for them, without consideration of their human rights and dignity. If people with disability are viewed as objects rather than people, this can have significant impacts on how they are treated and their inclusion in society.

For example, it is often assumed that if an adult has failed to develop a means of expressing themselves using any alternative modes of communication (including using symbols or signs) during their school years, it is impossible for them to develop their communication skills or to learn as adults. Correspondingly, it may be assumed that someone who does not use expressive speech cannot communicate, has a cognitive disability and/or does not have anything to say.

People, particularly those with Complex Communication Needs (CCN), are also often assumed to have a greater level of cognitive disability than they in fact do. People with CCN may not be asked about their perceptions of their life, supports and goals due to assumptions being made about their ability to engage in the process. They experience reduced opportunities to express themselves and to exercise choice and control, and regularly report how other people direct their questions and information to support workers or family who do not have CCN by default. Furthermore, there is widespread misunderstanding about the nature of communication disabilities and communication needs, a lack of knowledge about the range of supports, and multi-modal communication options including AAC available to help people to communicate and participate to their full potential.

These attitudes within the Agency, even when they are unconscious, may mean that the wishes of people with a disability are ignored, or they are not consulted regarding aspects of their care or life. At a basic level this may mean that NDIA staff communicate with a carer or able-bodied person rather than the person with a disability. They are, as a result, spoken about, rather than to, as if they were not present, or not at the centre of the conversation4. This is not only humiliating but also dehumanising for all people with disability at any life stage.

The lack of understanding and awareness about disability rights, and about the concepts of participation and inclusion has been noted amongst NDIA staff, stemming from a lack of knowledge about disability, limited experience relating to people with disabilities and how to manage an interaction with a person with disability.

Ableism within Australian culture, and in particular amongst workers in the Scheme must be specifically addressed. There have been some steps towards this with the NDIS Quality and Safeguarding Commission (Quality and Safeguarding Commission), in consultation with stakeholders including people with disability themselves producing a mandatory module ‘Quality, Safety and You’, using actors and people with

Lack of recognition of the importance of communication & accessibility

The estimated 1.2 million Australians who have some level of communication disability already experience a range of barriers to participation in civic, political and economic life. The Association has long advocated for recognition of communication access being as important as physical access to people with disability if they are to participate fully in all aspects of society. Therefore, it is extremely concerning that functional assessments used by the Agency do not contain questions relevant to the communication difficulties that participants might experience, and are not communication accessible.

Speech Pathology Australia has also noted significant inequity for people with complex communication needs in accessing the NDIS, seemingly due to a boundary on the provision of funding within the communication domain. Speech Pathology Australia has engaged in direct advocacy with the NDIA around specific lifelong conditions that affect communication as the primary domain, such as Childhood Apraxia of Speech (CAS) and Developmental Language Disorder (DLD). Whilst Agency representatives have acknowledged these communication disabilities within meetings with the Association, there continues to be significant variation in access decisions for these diagnoses, particularly for those over the age of 7.

A member discusses a recent example:

“I am working with a young boy with DLD. As he has just turned 7 he received an eligibility reassessment letter after only recently having a plan review and implementation. I wrote a letter stating his diagnosis of DLD and going into detail about what this means and how it affects him and will affect him. We then received a letter confirming his ongoing eligibility and they completed yet another plan review in the last few weeks, only to have NDIS send another eligibility reassessment letter (the same one). Mum called and the NDIS representative told her that DLD isn’t considered a permanent disability.”

Additionally, access decisions for participants with other impairments that are often communication specific, such as stuttering and those with cleft lip and/or palate are also negatively impacted by a reported attitude amongst NDIA staff that it is ‘just’ communication. Communication is a basic human right, however difficulties in this domain can also impact upon almost every other domain within the NDIS disability criteria, including social interaction, learning, self-care and self-management. Communication disabilities should therefore be recognised by the NDIA and training and consistent information provided to Agency staff.

Furthermore, the Association has long held the view that the suggested ‘postcode lottery’ of planning amounts is not dependent purely upon geography, but also deeper societal issues, and a lack of accessibility. Reports of inconsistency between planners are a common complaint amongst our members and participants who contact the Association, who frequently identify that it is the families or participants with greater capacity to advocate for themselves who obtain greater plans that meet their needs. Participants and families who are from culturally and linguistically diverse backgrounds, have complex communication needs or low literacy, or those parents of children with a disability who have a disability themselves are consistently disadvantaged by an overly complex system.

It is imperative that the communication needs of the person with disability (and their families) are taken into account as part of any and all NDIS processes. This must occur at all levels, for example in ensuring that the planning process, including all information relating to the plan, and how they might utilise it is communication accessible; and in provision of the necessary communication supports for the person to express their choice/s in their preferred modality.

Lack of transparency and communication with the sector

The issues described above are compounded by the lack of transparency within the Agency, which at times appears to border on obfuscation. Major changes that have direct impacts upon providers and participants alike are implemented without any lead time or prior information. The rules shift frequently, but then are not communicated to the sector, placing the onus on the provider to notice a shift in wording, change their processes or documents and communicate this to the participants they work with.

Consultation with the sector is often piecemeal in nature, and frequently the Association has been invited to a stakeholder consultation, only for there to be limited opportunity for change or influence over what is being suggested. For example, regarding the independent assessment process, several peak bodies were asked to give feedback on this process, only to discover that the assessment tools had already been determined, and group members were not able to have input into this critical process that would significantly impact upon participants. This sequence of consulting only after a decision has been made or is already in process defeats the purpose and is not in the spirit of co-design, as it is simply informing the sector of what is going to occur, rather than truly allowing feedback to be considered.

Communication with participants is also particularly poor, and in conjunction with an overly complex system, providers must engage in extensive unpaid work to support participant’s navigation of the system. For instance, plans are not written in accessible language and are most often unwieldy documents that are difficult to understand - regardless of whether the participant has cognitive or literacy difficulties, or comes from a culturally and linguistically diverse background.

One regularly occurring example that causes significant and unnecessary difficulty is communicating how a participant is managed. This is not clearly explained to participants, and their understanding is not ensured by NDIA staff, therefore frequently agency managed participants are engaging unregistered providers, because they do not understand the system. This leaves the provider out of pocket for the services that have been provided, as the families are unable to pay for this service themselves. This also occurs with plan managed clients believing they are self managed, and not understanding that they need to independently source a plan manager.

“Clients often don’t understand the terminology, and have difficulty understanding how payments are made. Often providing mis-information as a result of misunderstanding or language issues. We have had cases of payments/accounts exceeding $3000 waiting for payment from plan management providers. Often as a result of client indicating that the accounts are “Agency managed”. Not enough time is being spent with [planners] running through the terminology and as service providers we are left spending hours on end explaining everything to families when we don’t have the time to do so (out of session).”

One of the most critical aspects of the scheme, and one that frequently determines the type of supports a participant is able to access is the definition of reasonable and necessary. Unfortunately, it is also one of the most opaque concepts, that is poorly explained by the Agency, despite it being a common reason for denying supports within a plan. The lack of a clear definition, and clear principles underpinning decision making around what constitutes reasonable and necessary significantly affects participants being able to receive the supports they have requested. It also circumvents the ability of allied health professionals to write supporting documents addressing these criteria.

Generally, there is poor communication on behalf of the Agency regarding their decision making and information requirements with providers and participants alike. Frequently it appears to providers that there is not clarity within the NDIA regarding their own processes, and poor knowledge of what is required on behalf of the planner or LAC, relating to the constant policy changes and ‘plane being built as it is flown’ approach. Members report feeling as if they must meet increasingly unrealistic demands from NDIA staff with regard to supporting documentation, and this also negatively impacts upon participants having to request and potentially pay for multiple reports, due to a lack of transparency about what information is needed to make the decision. This back and forth and ongoing requests for the provision of reports and

Clinical Information Streamlining

currently could be streamlined if there was clarity regarding what the Agency required and this was communicated more clearly to providers and participants.

Combative attitude towards therapy providers

There are consistent accounts of NDIA staff questioning the expertise of experienced allied health professionals. Families have discussed with speech pathologists that NDIA staff have disclosed they have not even read the reports, or that they will be making the decision, regardless of the advice of the therapist. It is concerning that planners are making decisions about how much support for therapy is provided and what would be needed in NDIS plans in order for the participant to achieve their goals, without reference to the advice from technical advisors and allied health professionals (including speech pathologists).

“I had someone making the final financial decision on services after the planner had submitted their report call me to justify my request for speech therapy and then wanted to know what speech paths and OTs do.”\n It is also distressing for the highly trained speech pathologists who may have known the person or participant applying for considerable time to have their professional opinion questioned by NDIA staff who frequently have limited knowledge of disability and have never met the participant. This is worsened when there may have been many hours invested in the assessments and applications for funding which may go unpaid due to a perceived ethical obligation to the client.

“The entire process takes away from our professionalism - why are we asked to provide our professional opinion when completely uninformed, unprofessional and uneducated people (in our profession - in one case we were dealing with a planner who was a motor mechanic) decide and make judgements about our professional opinion? Most of this is expected to be done unfunded -this is not a sustainable model of provision. We cannot bear to see our families so stressed and unsupported.”

This devaluing of allied health providers is also seen in the numerous reports of NDIA staff refusing to fund qualified speech pathologists, and instead insisting that an Allied Health Assistant (AHA) is able to provide the same service, leading to drastic plan reductions with therapy funds being significantly limited.

“I am deeply concerned about the push from LACs and NDIS to use “allied health assistants” to save money. This is not saving money, it’s providing a lower standard of therapy and will not get the same results. It works out at a similar cost anyway due to the supervision and planning that is needed for an allied health assistant to be adequate.“\n The increased frequency of these occurrences is of grave concern to Speech Pathology Australia, as this appears to be a cost cutting exercise that will impact upon the safety and quality of services accessed by participants and has serious implications for the sector. Speech pathologists are university-trained professionals, whereas there are currently no minimum qualifications or regulatory mechanisms for AHAs. Additionally, by the NDIA’s own descriptors, AHAs must follow the guidance of and be supervised by a qualified allied health provider, and yet these supports are being stripped from plans.

It is the position of the Association that only the qualified speech pathologist is able to clinically determine when supports are appropriate to be delivered by an AHA and supervise the delivery of those supports through a delegated model, and these are vitally important steps to ensure the delivery of quality services. The allied health professional, not the NDIA staff member, is responsible for the practice of the AHA, and in most cases they assume the risk for the AHA under their insurance. It is irresponsible of the Agency to fund AHAs alone without the necessary supports and infrastructure needed to ensure they are adequately trained and supervised by a qualified speech pathologist.

It appears that therapy supports have been specifically targeted, as the area with supposed high costs that need to be reduced, however it should be noted that the utilisation rates for therapy supports (under

Capacity Building Daily Living Utilisation Rates

The capacity building (daily living) utilisation rates are actually much lower than the average plan utilisation rate in each state and territory as seen from the table below (data up to end of September 2022).

It must also be noted that it is disingenuous of the Agency to propose that therapy budgets are in some way ‘blowing out’, when the actualised payments are less than 60% of the budgets that have been allocated. This aligns with reports from speech pathology providers of antagonism and negative attitudes on behalf of NDIA staff, proposing that allied health professionals are in some way ‘greedy’, with corresponding encouragement of participants to haggle around professional prices.

This is unprofessional, as providers set prices in order to cover the cost of service and be able to continue to operate, and private medical providers within the health system are not held to price bargaining. It also creates unnecessary and unhelpful friction between providers and participants.

Power Imbalance With Participants And Families

Participants and their families express that trying to gain access to the NDIS and requested funding in their plans is a ‘battle’. The nature of the planning process can further compound negative effects for those from particular backgrounds that discourage questioning authority, or trauma backgrounds where this may have severe impacts upon their mental health.

As a result, Speech Pathology Australia members report that despite being already stretched clinically, with large caseloads, they are now often playing the role of advocates, writing review letters about whether a participant with a disability has tried all available treatment options, gathering evidence about whether their disability is disabling enough to gain funding, and then assisting families to apply to the Administrative Appeals Tribunal (AAT).

Certainly, it appears from the figures released within the quarterly reports that the numbers of decisions being taken to AAT are increasing, particularly across 2021. In June 2021, only 0.78% of active participants were appealing decisions at the AAT, this doubled to 1.55% in six months and only reflects participants, not appeals regarding access. By December 2021 there were 1,910 active appeals regarding the NDIS made to the AAT5, indicating that participants’ dissatisfaction with NDIS decisions is increasing. There is now a specific page on the AAT website dedicated to information for NDIS participants6 and a dedicated NDIS appeals service7.

It should be noted that the NDIA will not fund advocacy services or supports, up to and including denying funding for support co-ordinators to attend planning meetings. As discussed in the Royal Commission for People With Disability, the NDIS system in itself does not support self-advocacy well8 meaning that it is

Cost cutting

The NDIS, initially established in 2014 to allow people with disability to live an ordinary life, now has a focus on so called financial sustainability. This appears to be short sighted cost cutting, with planners and Local Area Coordinators having no knowledge of disability, or understanding of why certain services or equipment are vital to that person’s life, and how it may actually save money in future.

The Association believes, in line with the original NDIS principles and design, that NDIS prices should be the bar that is set for other schemes, as the standard that is expected from a scheme created to enable people with disability to ‘live an ordinary life’. From the testimonials from within the quarterly reports, the NDIS is assisting certain people with a disability to thrive, with access to the appropriate supports. It also directly contributes to the economy, with a recent economic report estimating a multiplier effect of 2.25 and economic contribution of $52.4 billion. The focus of the scheme should be on the benefits, not just to people with disability, but for Australian society as a whole, rather than cost cutting measures.

As one member states:

“Cutting therapy budgets in plans is a false economy. Every dollar of Therapeutic interventions saves the NDIS budget in the future.”

One member reports, in relation to the request for a high tech eye-gaze system:

“Having access to this device means this person can continue studying her Bachelor degree, get paid work and have access to basic communication rights we all deserve. However, having received the new plan, her stated goals were changed by the planner and the recommended AT (Tobii I-12) was not funded, with no explanation…This participant is obviously very upset. The result of this decision means that she cannot complete her degree, continue her volunteer work or seek paid work. Not to mention having access to basic communication needs like calling emergency services, ordering a taxi, building relationships etc.”

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This attitude is reflective of the dehumanisation of people with disability, whereby there is a monetary figure placed upon their inclusion and participation, and if the equipment or services necessary to achieve this are deemed to be ‘too expensive’, they are denied these basic rights. Equipment and resources are continuously being developed, as technology evolves and the understanding and awareness of accessibility for people with disability expands, however these developments are near useless if they are only available to those with the financial means of purchasing them.

“The time it takes to review and approve assistive technology is exorbitant and can put the person at risk. Assistive technology that has been recommended as the optimal tool to support communication is often declined due to ‘cheaper options’ available, even though the cheaper option hasn’t been recommended for a reason.”

At present the limited transparency around reasonable and necessary supports, and associated confusion and culture of cost cutting means that certain aspects appear to be over zealously applied. This is frequently reported around the ongoing nature of some supports, and the concept of ‘value for money’ where the clinical opinions of professionals are questioned, despite NDIA staff not having knowledge of certain principles that might be considered foundational and obvious.

One member reports:

[My client was] rejected. Needed a new report from Paediatrician stating that he still has Downs Syndrome (6 month wait and $500 here). Another client - 19 years old with Profound [intellectual disability] recently had funding slashed to $8000. Mum was verbally told “She’s had so much therapy in her life, you’d think she’d be fixed by now”.

One member discusses a case where in order to prove value for money for a low cost app (less than $300) they were asked to provide significant clinical information regarding options they did not intend to use. Effectively they were asked to estimate how long it would take to teach a language they weren’t planning to use to multiple people.

“We are applying for an iPad based AAC. We needed to trial 2 other AAC’s (sign and PECS). We need to show that the iPad option is value for money… The LAC says we need to work out how many hours it would take to teach the child to be a “proficient” signer as well as parents, educators etc.”

Another member discusses a situation that has subsequently been escalated to the AAT around the lack of understanding about the importance of speech therapy to build the capacity of communication partners, and it not being a once off support.

“Just having access to a comprehensive communication system is not the same as a wheelchair… or more accurately a microwave… where if you show the communication partners once you are set until the next system comes along, and therefore should not spend extra time coaching the communication partners in supporting and expanding communication.

[I] have provided references on efficacy of communication partner training for individuals using AAC but questions are being asked of why this is required if it was done last plan!!”

In particular the over extension of the ‘most appropriately funded by the NDIS’ aspect does not effectively take into account the intersection of the NDIS with other sectors. For example, once there is any mention of a person with disability needing to access the health system, it is reported that the immediate response from NDIA staff is that the NDIS is not responsible to provide any supports. There are reports including from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (RCPWD)12 that poor integration can have significant impacts upon the participant’s quality of care and wellbeing if there is not appropriate handover and transition between the healthcare system and community based supports.

The NDIA’s Responsibility to Fund Core Supports

The NDIA needs to develop processes to help planners to understand their responsibility to fund core supports for people with disability where they face additional barriers or have additional needs in order to participate in an episode of care within the health system. This is separate from the responsibility of the health system to fund health services and supports for people with disability just as they would for any other citizen.

Lack of cultural responsiveness

Aboriginal and Torres Strait Islander peoples often experience ‘double discrimination’ in regard to underlying racism and bias in addition to the issues related to their disability (e.g., being accused of substance abuse when in fact their behaviour is related to a disability). It must be acknowledged that due to this intersection, Aboriginal and Torres Strait Islander peoples have specific needs, and the NDIS process should be tailored appropriately, to ensure that services are culturally safe. At present there are reports, including through the RCPWD13 that despite a specific strategy, in practice there is no focus on culturally responsive practice by NDIA staff for Aboriginal and Torres Strait Islander participants or potential participants.

These issues are apparent from the very base level of the NDIS process, in that they are not accessible. It should be noted that for Aboriginal and Torres Strait Islander peoples, accessibility encompasses more than just physically having an office they can travel to, but a process that is culturally responsive. Filling in forms, and rigid systems that require families to engage in a particular paperwork trail, in a specific order and time frame are not responsive.

One member submitted a particular case study where she spent over a year attempting to assist a five year old Indigenous client to gain access to the NDIS. This included the access paperwork being lost by the Agency, and written letters being sent to the family, despite it being explained that they were not literate. Once the child had been accepted to the NDIS, there was a delay of three months to receive a planning meeting. This was because the family had been deleted from the ECEI partner’s list, due to a lack of contact.

Aboriginal and Torres Strait Islander peoples often have negative experiences with service providers in other areas/systems, and consequently may be wary of engaging with any mainstream services, including the NDIS, therefore the planning process must be tailored to take this into account. Unfortunately, NDIS system requirements pre-determine service providers to assess participants clinically which excludes and under-values Aboriginal ways of being, knowing and doing implicit within participants needs and context.

Standardised assessments are often grossly inappropriate for Aboriginal and Torres Strait Islander peoples, and may inflate the disability, or create it where it doesn’t exist due to cultural and linguistic difference. Additionally, research suggests that the disability may not necessarily be seen as a disability in Community. It may be socially accepted, in that they are who they are, and the family and community do not wish to change them, but rather they are embraced and supported14. In this way the deficit model, integral to the planning system being imposed on community, may be experienced as traumatic.

Whilst there is mention within the strategy of a planning resource developed for use with Aboriginal and Torres Strait Islander peoples, culturally responsive practice involves tailoring ways of doing that reflect the specific needs and customs of that community. It is not a case of one size fits all, where there can be one resource that is used with everyone. For this process to be truly responsive, it takes time to build trust and wrap around supports to get a true picture and move forward with respect for the context of that particular group of Indigenous people.

There is a need for localised supports

There is a need for localised supports and workers or guides who are familiar with communities, languages, customs, and opportunities for sharing and learning, however there is a lack of Aboriginal and Torres Strait Islander peoples employed by the NDIA. If this is to change, culturally responsive practice must also be embedded within the employment strategies implemented by the Agency in order to engage with local people in a safe way and champion working within the sector as being good for the whole community.

Issues with capability

Limited knowledge of disability

Speech Pathology Australia has on several occasions highlighted to this Committee, in both written submissions or at public hearings, our concerns about the lack of knowledge and understanding of disability displayed by many NDIA planners and its impact on NDIS participants. Due to the lack of transparency discussed above, it is unclear what training NDIA staff receive, however it appears from the inconsistency of decisions, and reports of inappropriate remarks that it is severely inadequate.

A member discussed the behaviour of a planner towards a family attempting to advocate for their child with Autism, who is not speaking, to have speech therapy in their plan:

“[the mother] got told by the planner to get a grip on reality… I believe he even swore at her while doing so. So many planners without the necessary skills trying to make judgements in areas that are outside their knowledge base.”

Another member reports:

“I had a situation with a brand new planner who had just finished a uni degree in human resources, was 21, and told the family that there was no need for OT and SP because they ‘did the same thing’… This was right before Christmas, and this planner put them (and me) through hell, demanding more and more supporting information and documentation, because they didn’t understand Autism. I have worked with this family for 3 years under NDIS, but still on Christmas Eve I had to write a third report, free of charge as they had run out of funding by that point, just explaining that yes, SPs do work with children with Autism, simply because the NDIS planner doesn’t understand Autism, or different allied health professions.”

As planners are the nominated delegates for provision of supports in plans, it is imperative that they are provided with the skills, tools and supports, including supervision and support, needed to be able to consider and make informed and appropriate decisions. Planners who are inexperienced with disability or lack knowledge of a condition need to be adequately trained and supported to ensure they are effective in their role.

Due to the staffing issues described below LACs are also fulfilling a role that involves extrapolating the needs of participants and conveying these accurately to planners, as well as discussing what supports might be possible with participants. Given that they can be employed regardless of their previous experience or employment background, this is a significant responsibility. Greater training around disability, cultural sensitivity, and accessibility that is implemented nationally for all planners, LACs and Early Childhood Early Intervention Co-ordinators is desperately needed to ensure they have the knowledge relevant to the decisions they are supporting participants to make as well as enabling more consistent planning decisions. Speech Pathology Australia has offered to consult regarding this training, or provide it directly, however this has not yet been taken up by the Agency.

Inadequate staffing and lack of alignment with the Commission

In 2017 the Productivity Commission, as part of its investigation into the costs of the NDIS, suggested that the Agency itself would take up 7-10% of the overall operating budget of the scheme in order to operate effectively[15] and it was suggested that there would be 10,500 public sector staff employed by 2019[16]. Unfortunately, the NDIA continues to run drastically under these estimates, employing only 4,852 public sector employees (as at December 2021[17]) to the detriment of the quality of their services.

For example, the original intention of Local Area Co-ordinators (LACs) was to link participants in to supports within their community[18], however due to taking on more duties within the planning process (as a result of the lack of planners), this is simply not possible.

The lack of staff directly impacts participants, particularly with regard to timely plan reviews. Additionally, at present there is no requirement for the NDIA to conduct an unscheduled plan review in an expedient manner. They must respond to the request for a plan review with regards to whether one will be conducted within 21 days, however there is no timeline as to when the review itself must occur. The new participant service guarantee has this listed as 28 days for a plan variation, but 60 days for an unscheduled plan review. This seems to be an unreasonable penalty to be experienced by participants when requesting rapid reviews of NDIS plans as a result of changes to a person’s care needs – including to enable them to get to and safely and effectively participate in necessary health care. They are also unable to escalate a matter to the AAT until the internal review has been completed.

It is unclear as to exactly why the Agency does not simply employ more public sector staff. It seems counterproductive to running a national multi-billion dollar scheme that affects the lives of 500,000 people to so severely limit the number of people able to implement it. It also affects the financial sustainability of the scheme to employ so many labour hire staff (sitting at 1,530 at December 2021).

Under-staffing also has negative impacts upon the staff that are employed. In the Joint Standing Committee’s hearing regarding the NDIS workforce plan, evidence was given that NDIA staff are significantly over worked, with high levels of burn out, and people with disability employed by the Agency especially impacted. It was described that this results in cutting corners regarding planning, so that plans are automatically rolled over, or processes not followed as there aren’t enough staff or time to follow standard procedures[19].

The NDIA as an employer must look at workloads, and appropriate staffing levels as a matter of urgency, given the lack of capacity for current staff to enact the responsibilities of their original roles.

Lack of alignment with the Commission

Following the inception of the NDIS, the NDIS Quality and Safeguards Commission (the Commission) was established in December 2017 to ensure the independent governance of NDIS providers and quality and safety of services for participants. As a regulatory body, it is required to be completely autonomous from the NDIA, however there is also a lack of communication and alignment between the two, which has significant impacts upon participants and providers alike.

Prior to the creation of the Commission, registration of providers occurred through the NDIA, and they continue to be responsible for payment and billing practices. The process of transferring registration to the Commission was meant to happen automatically, and despite varying lead times for different states and territories so that this did not occur all at once, there were numerous administrative errors.

Pathology Australia members reported being registered as a completely different professional, such as

art therapist or counsellor. Members found it very difficult to establish how these errors occurred, and how to have them altered quickly so that it did not affect their service provision and billing.

However, the poor communication between the Commission and the Agency is most apparent in regards to the new dysphagia standards that commenced on 15 November 2021. Lack of alignment has meant that the necessary processes have not been put in place by the Agency to allow for the corresponding changes to services for participants. Specifically, the new standards mean that support workers will be required to have additional training, and in some instances organisations providing mealtime supports will need to be registered for that specific high intensity skill module.

This has a knock-on effect to participants who will potentially require more highly skilled support workers who have completed the required training and can actually charge a higher rate under completely different line items. As a result, participants may need additional funds placed within their plan for an updated mealtime assessment, training of new support workers and to employ support workers at the different rate. Organisations will most likely need to rescind existing service bookings and create new ones, which may not be possible until the changes are made from the NDIA to the participant’s plan. Members are also reporting that some organisations are delaying completing mealtime assessments in order to delay having to register within another category.

This is a huge logistical issue, and one that has the potential to affect thousands of participants, on a daily basis, in a very significant way. Speech pathologists are key stakeholders in this process, as a diagnosis of severe dysphagia would trigger the need for a review, however the Association was informed of the changes at the same time as the general public. The changes were in effect immediately, and the Commission have not responded to requests for a meeting, or the provision of specific information sessions for speech pathologists working in the sector.

When the Commission was asked for clarification regarding whether those who were not registered for the relevant high risk category would be required to gain registration prior to providing mealtime support for identified participants, they responded “Decisions about the level and type of support for a participant in their NDIS plan are matters for the NDIA; the Commission does not have any role in relation to those decisions.” Nevertheless, the rules that they have put in place - seemingly without notifying or working with the NDIA - directly impact these decisions and need for these supports. Strong communication between these two bodies and alignment of processes/changes, with lead time to ensure smooth roll out is desperately needed to lessen the impact upon participants.

Unreasonable delays & hidden costs with Assistive Technology

Speech Pathology Australia members consistently raise concerns about the length of time participants are having to wait for their assistive technology to be approved. Communication is a basic human right, and as per article 21 of the United Nations Convention on the Rights of Persons with Disability20, participants have a right to be able to communicate in the form of their choosing. Significant delays in the approval and receipt of assistive technology for augmentative and alternative communication (AAC) denies the participant access to communication and limits their freedom of expression. The Association has multiple reports of cases of participants waiting nine months or more to receive their vital assistive technology, during which 时间 they may not be able to communicate.

There are no monitoring processes for either participants or providers that provide tracking information regarding where an application sits, however there appear to be two main bottlenecks creating lengthy delays for assistive technology (AT). Firstly, in the approval for the supports to be included within the plan. This is due in no small part to the complexity of the process.

Levels Of Assistive Technology Within The NDIS

There are four levels of assistive technology within the NDIS, often grouped almost interchangeably into two levels, but three budget designations. Levels 1&2, low cost and low risk generally fall under $1500 and therefore do not require an assistive technology request, then Levels 3/4, which are high risk or high cost, generally covering the mid-cost budget range of $1,501- $15,000 and high cost of $15,000+.

High-cost AT (and until very recently mid-cost as well) requires a provider to submit an assistive technology request form. This was also often required for items that were deemed ‘high risk’ even if they were low cost, a classification that was frequently applied to any communication device or app, regardless of cost. It should be noted that the general AT form is 18 pages long in its blank state, and members report that they will spend a minimum of 5-6 hours completing it, or ensuring the required information from the form is included within their report. This can often be at least partially unpaid, as there are insufficient funds included within the plan to cover the amount of time required to complete the request process.

“We have had excruciating experiences with some planners trying to get assistive technology budgets approved for children who are non-verbal and who require a communication system to be put in place. In some cases we have spent 10 hours writing up letters/reports of support after our initial (detailed and more than adequate support letters) have been submitted and knocked back, up to 4 times!! This level of work is unsustainable and I don’t feel that planners have a realistic expectation of the time commitment or the demands they are placing on service providers. We have had to wear the brunt of this cost as we feel terrible charging families for this (other than our usual report writing times).”

There are also accounts of an expectation, applied inconsistently, that the participant will have trialled multiple different options. This is problematic within the AAC space for several reasons. Many of the technology items are applications that are tablet based, and are purchase only, without any free, or even paid trial options. Even if the programs have a trial option, there are no opportunities to trial the tablets themselves. Members report that the best way around this is for the speech pathologist working with the client to have a version of the program on a tablet to then be able to trial with participants in sessions themselves - a solution that must be self-funded by the therapist.

For more expensive pieces of equipment, some companies may offer trial periods, however these are limited, often have long waiting lists and frequently have a cost. Trial costs are reported to rarely be included within plans, disadvantaging those participants who cannot pay out of pocket. Additionally, as each piece of equipment or aspect of the request must be trialled there is a complex organisational process to co-ordinate trial periods for different technology (for instance, a communication device, and then the eye gaze equipment to access it), which may simply not be possible, particularly with current postal and delivery delays. Often this co-ordination falls to the treating provider and is frequently unpaid.

Whilst it is reasonable to expect that technology will be recommended based upon clinical evidence of its benefit to the client, with the complexities involved, it may be that the ‘best’ option is the only one that is trialled, and if it is successful, it is reasonable to expect it to be funded. Instead, there are multiple accounts of AT being denied because only one trial was conducted, or the provider was not able to provide extrapolated clinical information about hypothetical options.

“[I’m experiencing] significant difficulties with the process of Communication AT applications (from a very experienced clinician who has been successful previously in applications.). Applications sent back with requests for increased trialling of equipment or trialling of alternate equipment over and above what was previously accepted.”

“It has already cost more than the device in $/time to write the AT application, and now it’s going to cost more than that again to fight the decision…The additional stress caused to families, and the additional wait time for this child to receive their AAC device (he was distressed for some time when the AAC trial finished) is not okay.”

These delays can be particularly detrimental for participants with degenerative conditions or changing needs, as it can significantly impact upon the possible benefits of the technology.

“One particular client, with degen[erative] disease: recommended AAC, funding available however needed to be released. Unable to be released to my company because we are not AT provider registered. Other company was registered as AT provider, however they were not granted access to funds. When they were, they were only granted funds to supply iPad and not AAC app. Recommendation was given in February. They have only just been provided with a solution from NDIS [in November]. Client’s voice has changed completely and hopes of voice banking are now gone. Client is understandably livid, likely to have only 12 months use of the device now.”

The second major bottle neck being reported is the delay in having the funding actually placed within the participant’s plan after the assistive technology is approved. It appears that if the assistive technology request and information can be submitted at the time of the plan being developed it can assist in shortening this process, however many participants require funding in order to access a speech pathologist to provide this information in the first place. If the participant does have funding within their plan for an AT assessment and report, they can still experience the abovementioned delays, which are compounded if the funding is placed under the wrong area, or type of management.

One member discusses her experience regarding a paediatric participant who had been waiting for four and a half months for their device:

“This is despite me submitting reports and recommendations prior to the plan development…The NDIS staff member I spoke to following my complaint acknowledged the significant impact this delay was having on the child’s development and was made aware of the sum of money being spent on a loan device in the interim and the limited availability of this loan. He had promised to have the AT application sorted within 2 weeks – before the loan agreement expired. This expired on the 20th September [3 weeks ago].”

If participants do not have their AT needs accurately reflected within their plan they must ask for a full review of their plan, and in some cases submit a change of circumstances request in order for this review to be considered. The NDIA do not currently have any fixed timelines regarding when they will conduct an ‘unscheduled plan review’, even if the issue with the plan is due to an error made by the NDIA themselves.

Whilst the NDIA often make changes to the AT process and systems in attempts to lessen delays, the frequency of changes and poor communication simply results in further confusion amongst their staff and providers. Furthermore, these changes rarely address the core issues that seem to impact upon the significant delays experienced by participants namely:

• Limited staff available to appropriately evaluate and assess applications

• Lack of a dedicated email address for applications and information regarding them to be sent

• Lack of knowledge regarding assistive technology by the NDIA staff making the decisions as to whether or not it will be funded

• No tracking system or information to allow participants or providers to know how the application is progressing

A new policy that the Association has concerns about is that participants only require a letter of support to purchase equipment up to $15,000. The complete shift from requiring multiple trials and justification to none, means that there is no safeguarding process in place to ensure appropriate equipment prescription.

Whilst the intent behind this change to the mid cost AT process is to streamline the provision of AT, and lessen delays, this is likely to have significant unintended consequences.

When the low-cost equipment process was introduced in 2020 to assist participants to purchase equipment for telehealth services there was an enormous amount of pressure put upon allied health providers to write support letters because participants were informed they were able to get an iPad. In some cases, this was appropriate, but there were reports of numerous cases where participants or families purchased equipment when this was not recommended by an allied health professional, but ather a plan manager or support co-ordinator. Speech pathologists were placed in the very difficult position of being forced to deny the provision of letters that were being demanded in the cases where they had not seen the participant for some time, or they were not receiving telehealth services, as this would be a breach of the Speech Pathology Australia Code of Ethics.

Without parameters around this new mid cost process, and strict training regarding scope of practice for support co-ordinators and plan managers it is feared that there will be a repeat of the 2020 wave of requests, on a grander and more expensive scale. Greater clarification is also required regarding the supports that, due to their level of risk, should still involve an assessment by a qualified allied health professional. It should be noted that as part of a new process there will be ‘assistive technology mentors’ providing services without a relevant allied health qualification, and therefore no corresponding governance or regulation. Whilst the potential lived experience that these mentors have will be of great benefit to participants, any consultation will need to take place alongside an assessment by a qualified allied health professional.

These changes leave participants vulnerable to wasting large amounts of plan funding on inappropriate and potentially harmful assistive technology. Even if the AT is not actively dangerous, there may still be an opportunity cost whereby the participant loses time that could be spent achieving positive outcomes if something more appropriate had been put in place.

Recommendations

In summary, Speech Pathology Australia recommends the following:

• That the module regarding attitudes towards people with disability be mandatory for all providers and NDIA staff to complete, with a clear process for reporting ableism if it is observed.

• The NDIA publish clear and communication accessible information regarding planning, how the scheme works and planning decisions, ensuring this information is consistently provided to participants by NDIS staff.

• The lack of equity around access to the scheme for those with communication disabilities to be addressed.

• The Agency to be staffed adequately to allow staff such as Local Area Coordinators to perform their roles as intended.

• Mandatory training to be provided for NDIS staff regarding disability (particularly communication disability, accessibility, cultural sensitivity) with an emphasis on improved quality and consistency of decision-making during planning.

• Adequate lead time to be given, prior to major scheme decisions and processes being implemented, with opportunities for true consultation and feedback to be provided by peak bodies and other stakeholders.

• Strong communication and alignment processes between the Agency and the Commission need to be established to ensure that rules put in place by the Commission correlate with the necessary NDIS changes.

• The clinical opinion and reports of professionals providing supports to the participant should be taken in to account and held in high regard by NDIA staff when determining the level of funding within a plan.

• The concept of reasonable and necessary should be defined, with clear, communication accessible examples. When supports are denied within plans, an explanation should be given as to how and why they were not determined to be reasonable and necessary.

• The NDIS complaints and appeals process to be made communication accessible.

• The true cost of recommending assistive technology to be covered within participant’s plans, including adequate report writing time and trial costs, capacity building supports for families, and an emphasis on best practice assessment.

• Ensure that ‘qualified assistive technology assessors’ are appropriately skilled and trained to be able to make decisions regarding recommendations made by allied health professionals.

• Core issues regarding the delays within the AT process to be addressed by:

  • Creating a dedicated email address for applications
  • Employing more qualified and knowledgeable staff to evaluate and assess applications
  • Creating a tracking system that is accessible by both providers and participants to track the progress of their request

• Clear delineation of responsibility of providers for equipment is required. There should be a limit regarding the time since prescription, and caveats regarding fluctuating needs and reasonable clinical assessment.

• Training to be provided for support co-ordinators, plan managers and NDIA staff regarding the rules around the new mid-cost process and their scope of practice.

• Develop specific pathways and processes to address the needs of people with disability who are also

  culturally and linguistically diverse, and First Nations people.

• Develop specific arrangements within a culturally sensitive and responsive planning process to address the needs of First Nations people with disability to enable greater service intensity when appropriate and wrap around supports. This should be co-designed with Community and First Nations people with disability.

• Develop targeted culturally responsive resources for Indigenous peoples, rather than retro-fitting existing resources.

• Ensure that culturally responsive practice is embedded within the NDS as a whole, including improved employment strategies to specifically encourage Aboriginal and Torres Strait Islander peoples to work for and within the scheme.