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Speech

Pathology

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Speech Pathology Australia’s submission to the

Joint Standing Committee on the National Disability Insurance Scheme’s Consultation:

‘Current Scheme Implementation and Forecasting for the NDIS’

28 February 2022

The Speech Pathology Association of Australia Limited ABN 17 008393 440

Hon Kevin Andrews MP Chair, Joint Standing Committee on the National Disability Insurance Scheme

Sent electronically: ndis.sen@aph.gov.au

Dear Mr Andrews,

Speech Pathology Australia welcomes the opportunity to provide feedback to the Joint Standing Committee’s review on the implementation and forecasting of the NDIS. As you are aware, Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing more than 12,500 members. Speech pathologists are university-trained allied health professionals with expertise in the assessment, diagnosis and treatment of communication and swallowing difficulties, and have expertise in the prescription of assistive technology in these areas.

Speech Pathology Australia has concems regarding several of the current financial assumptions and historical data that is informing the modelling of the scheme. There are many examples of inequity in regard to significant variation that is seen between different plans. In addition, there are several areas where the intersection of the NDIS and non-NDIS services is not being managed adequately, to the detriment of people with disability.

We provide more detail on these issues below in our response to the relevant consultation questions and make recommendations that we hope the Committee finds useful. To inform our feedback we have conducted multiple surveys with our members and used their comments to augment our response. We preface this with brief background information about communication disability, communication access and the role of speech pathologists. As always, we would be very willing to provide more detail of the issues we highlight in our submission directly to the Joint Standing Committee.

In the meantime, if Speech Pathology Australia can assist in any other way or provide additional information, please contact , senior Advisor Disability,

Thank youfor the opportunity to contribute to your inquiry.

Yours sincerely

Tim Kittel National President

Table of Contents

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

Speech Pathology Australia’s response to relevant consultation questions: ……………………………. 6 a. The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS funding. ……..6

  b.   The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories
and the Commonwealth, particularly aged care, health, education and justice services ............................................7

  c.   The reasons for variations in plan funding between NDIS participants with similar needs...............................9

  e.    Financial and actuarial modelling and forecasting of the scheme ..................................................................... 16

     f.   The measures intended to ensure the financial sustainability of the NDIS (e.g. governance, oversight and
 administrative measures).................................................................................................................................................... 20

  g.   The ongoing measures to reform the scheme ...................................................................................................... 21

Recommendations …………………………………………………………………………………………………………..23

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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 in response to the questions we believe are relevant to speech pathology 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 12,500 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 also 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, assist 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 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).

Speech Pathology Australia’s response to relevant consultation questions:

a. The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS funding.

Access for Communication Disabilities

The Association has 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 conditions that affect communication as the primary domain, such as Childhood Apraxia of Speech (CAS) and Developmental Language Disorder (DLD). Nevertheless, there continues to be significant variation in access decisions for these diagnoses, particularly for those over the age of 7. The Association has received numerous reports of denied access, restricted plan lengths (of 6 months or less), and children being automatically removed from the scheme when they turn seven, with little or no notice to prove eligibility, causing extreme distress for families.

The following was reported by a member and is reflective of these sorts of confusing and contradictory access decisions:

“The child is a 7 year old who has DLD and ADHD. The child is an ECEI participant (plan managed) and she had her review in September last year… To our delight, her plan was renewed for another year…In January, the NDIS contacted the family requesting further information to be submitted because they were reviewing her case (I should be clear here that the family had completed the full planning meeting last year, it wasn’t just automatically renewed). They were given a date to submit documentation… The family has since found out through their financial intermediary that the child’s plan was ended on the date they had been given to submit documents. The family had not been informed that this would be the case. If they had been, it was certainly not clear. This has left both myself and the OT with outstanding invoices. The family is obviously very distressed.”

ILC Grants

The Association has concerns regarding the Information, Linkages and Capacity building (ILC) grants as an approach. Whilst organisations may be successful in gaining funding, this may be for short term individual projects, often without the structures in place to affect change or be of benefit on the larger scale that is needed. By funding a range of piecemeal projects, at varying scales, in different geographical areas, the NDIA is not focusing on ensuring other more over-arching supports are in place.

For example, the original intention of Local Area Co-ordinators (LACs) was to link participants into supports within their community4, especially in cases where they might not gain access to the NDIS, or only qualify for short -term supports. Instead, LACs often take on more planning-based activities, lacking the time or capacity to complete this aspect of the role. Those people with disability who do not meet the access requirements subsequently have no other avenues of support, or information on other options.

“I am also very disillusioned with the notion of Local Area Coordinators - in two cases just recently, my participants who have disabilities and poor English really needed better assistance from the LACs, with more time given, clearer explanations and a more comprehensive understanding of the needs of people with severe hearing impairments and little English.”

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The need, and a willingness to gather comprehensive information about health history and co-morbidities of people with disability, the changes to the service delivery system described above have made it more difficult to access and share this type of information.

Significant delays continue 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. This is particularly problematic for people who have a clear diagnosis of a degenerative neurological condition, but there is evidence that a number of diagnoses which lead to lifelong disability (such as cerebral palsy, or Down Syndrome) are also associated with earlier onset of health issues which are more typically associated with ageing, including dementia. The NDIS system needs to be able to prioritise review of plans for some participants (using a triage approach) and provide a ‘rapid response’.

This will only increase now that the NDIS Quality and Safeguarding Commission has added in the two new mealtime standards that organisations and providers need to comply with, increasing training needs and obligations for participants. It should be noted that this has occurred without additional funding being made available from the Agency in plans prior to these Standards being introduced, putting stress on participant’s budgets, and creating significant additional administrative burden to try and gain additional funds .

NDIS planners do not have adequate supports in place to enable them to make decisions, based on the NDIS Act and the ‘reasonable and necessary’ criteria, that effectively take into account the intersection of the health and disability sectors. Once there is any mention of a person with disability needing to access the health system, it is reported that the immediate response is that the NDIS is not responsible to provide any supports.

The NDIS 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.

Funding of supports at the interface with health services is problematic, as there is a lack of clarity regarding which sector will fund supports for people with disability such as the funding to allow support workers to attend appointments with a person with disability, or to provide support within an acute care setting to ensure that the person with disability has a means to communicate any concerns and to ask questions. It is also challenging for disability services to access funding to enable paid workers to receive training to enable them to support a person with disabilities who has new health support requirements. Provision of the training may be funded, but not the time of the support worker to undertake the training.

Due to the business model of the NDIS, with variable plan amounts, and inconsistent timelines for the commencement of funding, it is challenging for providers to quarantine timeslots to be available to support these participants when they are transitioning out of the healthcare services and into the community. This can result in NDIS participants remaining within the healthcare system longer than is necessary, or potentially having a gap without services. The wider impact of this is far-reaching and can go as far as placing people in danger if the person with disability has behaviours of concern.

It appears that many health staff are not familiar enough with the NDIS, or the process of applying, or alternatively do not have the time available to assist people with disability in applying to the NDIS. This results in people with disabilities potentially having their applications rejected, even when they may meet the NDIS criteria, or not being able to apply at all, due to a lack of supports to assist in this process.

Aged Care

Specifically with regard to aged care, there is a large service gap for older people with a disability who are 65 or older, as they do not qualify for the NDIS, but there is a lack of any alternative services, as My Aged

Care does not cater for the needs of people with disability, if they had not already been registered for services through Continuity of Supports.

The Continuity of Supports program does not accept new clients7.

For those older people who have been able to access the NDIS prior to their 65th birthday, the current interface between the NDIS rules, and the processes within residential aged care facilities still often affect the services and supports that are able to be provided. It is unclear, for instance, how referral processes work, which is critical, as it is interlinked with the question of who is responsible for paying for the service, resulting in older people with disability potentially ‘falling through the cracks’.

The new regulatory requirements for the aged care sector under the NDIS Quality and Safeguarding Commission have added further complexity to this issue, and there is concern within the sector as to how alignment of the differing regulatory frameworks will move forward. Despite a lack of clarity regarding how this alignment will occur, providers will be expected to fulfil the as yet unknown requirements from 1 July 2022, which will cause immense upheaval for the sector. At the time of writing, with less than four months until alignment, there are still no supports available to assist providers with this transition.

Justice

Whilst the NDIA discusses on their website that they are responsible for certain supports, and will arrange a plan to be put in place prior to a person’s release from a custodial setting8 in actuality, without specifically targeted supports this may be out of reach for many people with disability, particularly cognitive disability, due to significant logistical barriers. Evidence provided during Hearing 15 of the Royal Commission in August 2021 discussed the lack of supports provided to NDIS participants within the justice system, and difficulty in people with cognitive disability accessing the NDIS and subsequently being able to transition from custodial environments9.

One member reports:

“There are a lot of systemic issues which make navigating between Youth Justice and NDIS difficult. One example of this is consent. NDIS age of consent is 18 years, which means young people can’t sign consent for the services they receive, and tracking down and getting consents signed by a parent is often difficult and time consuming”

The evidence provided during both Hearing 11 and 15 indicates that the interface between the NDIA and the justice system, particularly in regard to adequate supports to enable reintegration into community-based services, and provision of services whilst a participant or person with a disability is incarcerated is severely limited10. Despite the NDIS announcing the introduction of specific Justice Liaison Officers in late 201911, this program has been implemented in differing ways, with limited resourcing. The result is that the integration and connection between the NDIS and participants or potential participants is not consistent, and this remains an area of significant need.

c. The reasons for variations in plan funding between NDIS participants with similar needs

Speech Pathology Australia has on several occasions highlighted to this Committee, either in written submissions or at public hearings, our concerns about the lack of knowledge and understanding of many NDIA planners and its impact on NDIS participants. Many of our members have provided feedback about

Poor decisions and inconsistencies regarding eligibility

poor decisions and inconsistencies regarding eligibility, level of service/therapy and/or provision of supports such as communication devices being based on interpretation of ambiguous guidelines and/or inadequate knowledge. 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.

The Association was recently made aware of an example of this that is quite common:

An internal review had taken place to assess a child’s eligibility for the scheme. The reviewer deemed that “Developmental Language Disorder is usually diagnosed by a specialist, (usually a paediatrician), a child’s diagnosis will usually change to intellectual disability, autism, or another condition as they get older, and “Developmental Language Disorder will not be diagnosed for the first time after 5”. This was not based on stated expert witness from an impartial professional engaged by the Agency, and is not based on clinical evidence.

In fact, the ICD-11 states “Developmental Language Disorder emerges early in development, though it can be challenging to distinguish typical variations from impairments in language development prior to age four. Diagnosis from age four onwards tends to yield a more stable symptom presentation and is more likely to be persistent.“12

Statements like these are distressing for participants, families and their support networks, who are not only being told incorrect information, but also that they are not eligible for funding that others with the same support needs have. It is also distressing for the highly trained speech pathologists who are familiar with the person applying to have their professional opinion questioned, particularly 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).

Our members have also repeatedly raised concerns regarding omissions and inconsistencies regarding levels of service/therapy. There have been examples of plans prepared for individuals with similar functional needs not including key supports that are reasonable and would be considered necessary by anyone familiar with these specific disabilities. In addition, there are many reports of over-funding or significant underfunding of supports and therapy. 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/experts (including speech pathologists).

Speech Pathology Australia members report that despite being already stretched clinically, with large caseloads, they are now instead 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). This is also having an emotional impact upon therapists.

One member describes:

“Families are angry, frustrated and feel cheated and we cop the brunt of this. Social work was not my career. Family support is not what I want to spend my time doing when the client’s communication and practical daily survival are at stake here. Is this an insurance package that is guaranteed only until you open the box to use it? This is what some families are saying.”

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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. Concurrently, NDIS staff, in particular planners and LACs, frequently have little to no knowledge or experience with disability, with the burden of explaining disability falling upon the family or participant.

Our members report:

e “Too many people are getting a slice of the pie and the participants, especially those who don’t understand the system are getting a raw deal. The system is cumbersome, and inequitable as those who know how to ‘work the system’ get more funding than those who don’t. Not all the planners give the s ame amount of funding.”

e “In discussions with an NDIS Coordinator for [our] Council we were advised that whilst our NDIS reports were targeted and appropriate, our professional recommendations that a high needs client needed funding for other allied health services were dismissed. We were told this largely related to limited NDIS staff understanding of the role of a speech pathologist.”

A system that is designed to provide access to appropriate supports for people with disability must ensure that staff demonstrate a level of knowledge and experience in disability in order for the program to achieve its aims, and provide appropriate financial governance over public money. To ensure participants are at the centre of decision making and planning and are supported to make a truly informed decision, it is vital that the NDIA provide all relevant information. Otherwise a participant is at risk of not being aware of potential benefits that may be achieved and not making an informed choice.

What can be observed, as a direct result of the variable and frequently limited knowledge of planners and LACs, is an inequitable system that does not provide equity of access, nor any governance over the identification of appropriate areas of function that may benefit from targeted and informed supports. In addition, this can place a burden on participants to identify all needs and functional goals that may benefit from targeted supports, however, the Association has received many reports of participants being unaware of the potential benefit that can be achieved from a variety of professional services, including speech e pathology, as neither they nor the NDIS staff member were aware of what could provide benefit. Those participants are missing out on making an informed choice, which is limiting their access.

It would not be considered appropriate in any other government-funded program to utilise information from sources other than those with relevant knowledge in the specific area to contribute to access and funding decisions. Speech Pathology Australia considers that it is not appropriate nor ethical for the government to provide access to funding for supports without having a mechanism to ensure the quality of information provided to participants through planners and LACs informs participant choice.

The nature of the planning process is often described as gruelling, and a ‘battle’, further compounding negative effects for those from particular backgrounds that discourage questioning authority, or trauma backgrounds where this may have severe impacts upon their mental health. These factors mean that those who are better able to navigate dense written documents, convey their needs, and potentially more willing to complain have better outcomes during planning.

Speech Pathology Australia members report:

e “I don’t understand how some go through easily and get an adequate allowance and others who have applied at the same time are hung out to dry with no funding even when they are in the same school class or support unit, with similar support needs.”

e “I had two families living on the same street who both had Autism level 3. One received therapy supports for $2,000 and the other for $10,000. One was a migrant family living in Commission housing and one

Assistive Technology

The Association would like to highlight assistive technology as one area where there is considerable inequity not always related to a participant’s postcode. Speech Pathology Australia members consistently raise concerns with the length of time participants are having to wait for their assistive technology to be approved, and policies which unfairly disadvantage agency-managed participants in accessing assistive technology.

Communication is a basic human right, and as per article 21 of the United Nations Convention on the Rights of Persons with Disability[https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-21-freedom-of-expression-and-opinion-and-access-to-information.html], participants have a right to be able to communicate in the form of their choosing. When a chosen communication device takes an inordinate amount of time to be approved, or the approved funding to be available in the plan (more than nine months in documented cases), or the device is denied by a staff member of the NDIS who does not have the appropriate knowledge or experience to make that decision, this denies the participant access to their ‘voice’ and limits their freedom of expression.

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 social, economic, sporting and community life. 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. Therefore, it is imperative that the communication needs of the person with disability are taken into account as part of any and all NDIS processes. This must occur at all levels, for example in ensuring 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.

People with disability and their caregivers struggle to navigate the NDIS, often as a result of inadequate health literacy or poor English language skills. Those who do not have effective advocacy, or understanding of the NDIS, are disadvantaged in regard to being able to make informed decisions.

The planning process must be broken down, made communication accessible, and explicitly explained to participants. Plans should be written in Easy English, with the funding allocations clearly communicated to participants, families, and providers, with consistent information provided by NDIS staff, rather than it being a ‘provider issue’. Consistent, transparent information that is communication accessible is essential to enable participant choice and control.

Inadequate hours provided within plans

In regards to therapy supports, there are significant issues with certain supports being underfunded, due to a lack of understanding regarding the length of time required. This is particularly of concern in relation to assistive technology reports and trial processes, and mealtime supports. The Association has received numerous reports from members regarding limited funding being provided for a dysphagia assessment, mealtimemanagement plan and subsequent training for carers and support staff. This is an issue of dignity and safety for the participant and Speech Pathology Australia would strongly urge the NDIA to follow the clinical recommendations made by the relevant speech pathologist in these cases, allowing for an appropriate number of hours to provide this service to ensure safety and quality.

Our members discuss:

“Lack of understanding by planners and planners not funding the recommended services and going against the clinician’s clinical judgment. This is particularly seen with not getting additional funds allocated for travel and reports. The planners will expect AT applications done in 3 hours.”

“Essentially, the NDS have cut funding down from our initial recommendations of weekly sessions for each discipline (SP, Feeding, OT) to half of this at fortnightly sessions. They have also provided funding for weekly Allied Health Assistant (AHA) sessions to support this, however, I had actually recommended in my report that this client is not suitable for AHA sessions based on their complex diagnoses and presentation.”

This apparent 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. This is of significant concern for our members.

“>I’m concerned about the use of AHAs working with participants who really should have a fully qualified

Speech Pathologist working with them. This seems to be a cost cutting exercise when adequate funds for the right professional should be allocated in the first place.“

“>

I am deeply concerned about the push from LACs and NDIA 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.”

The increased frequency of these occurrences is alarming, 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.

Drivers of inequity for rural and remote participants

Rural and remote communities experience a lack of appropriate services and infrastructure generally, addition to thin markets for disability services. There may be a cultural expectation that the person with cognitive disability will be supported by family. However, people with disability may have complex family and individual issues. When the family support systems fail, there may be minimal services available. Additionally, people from remote locations often need to travel and leave family in order to access services.

CURRENTLY THE LACK OF AN ADDITIONAL TRAVEL BUDGET EFFECTIVELY DISCRIMINATES AGAINST PARTICIPANTS IN RURAL AND REMOTE AREAS IN TERMS OF ACCESS TO SERVICES AND PROVIDERS ARE LEFT HAVING TO GRAPPLE WITH THE DILEMMAS AND SERVICE COSTS. OUR MEMBERS REPORT THERE ARE SIGNIFICANT ADDITIONAL COSTS TO PROVIDING SERVICES IN RURAL AND REMOTE AREAS, INCLUDING TRAVEL, DIFFICULTIES WITH RECRUITMENT AND RETENTION AND LIMITED ACCESS TO TRAINING AND SUPERVISION.

“>Current mileage costs under the NDIS are not reflective of actual costs. In regional NSW we have seen a

70% increase in the price of fuel in the last 12 months. The NDIA reportedly offers participants “choice and control” however, in regional areas, this is not true. Participants often have no choice and it is difficult as a provider to have economies of scale in locations with low participant numbers. The NDIA needs to better consider travel costs when building a participant’s plan. It is also difficult to justify seeing small numbers of clients in a regional location (e.g. MMM5 with 1hr travel each way) when the price needs to be passed on to the participant, reducing the number of therapy hours they receive.“

Our participants have not received a rural or remote loading in their plans

(ie using the higher price f rom the price guide) and most clients have been denied travel in their plan, being told they can travel to the appointment or the provider can group appointments to reduce costs. The pricing arrangement does not cover our costs of delivering quality services. While I know I can increase the number of clients my clinicians see to increase income, I know that they are pushed already to deliver quality services with the caseload they have. I’m aware of other organisations having 80% billable targets and people are getting burnt out because it doesn’t account for the additional travel time take[s] for us. It’s also key in rural and regional areas to build capacity so we focus on the bigger picture and look at community education which we often can’t invoice to a specific client.

Most providers servicing MM6 and MM7 locations using an outreach model report making a loss on this service as costs associated with travel to MM6 and MM7 locations such as mileage, wages, accommodation and meals are greater than what they can recoup for the outreach trip even when a number of participants are seen during the visit. Participants are not able to access funding to travel themselves to visit therapists, and therapists may not choose to travel those distances, due to the financial burden. As a result, there are reports of participants being encouraged by NDIS staff to move closer to services, rather than have additional funds provided for travel.

One rural member discusses:

“Numerous [examples] exist of other service providers in town not travelling 45 minutes or more to see children in neighbouring towns so funded kids missing out on service. Therapists who used to travel as community health staff now staying in the major town as so much funded need there, people living away from town needing to travel to them or not get their service.”

This refusal to provide budgets for travel appears to be based upon the erroneous assumption that there will be providers accessible in all areas, or that telehealth can be provided. This is not always the case with thin markets, and remote areas that experience poor internet connections, and may not be an appropriate mode of service delivery depending on the client’s needs. Additionally, the provision of telehealth changes the mode of delivery, not the clinical requirements, therefore there is just as much work involved and telehealth is rarely able to be offered at a lower cost.

One member reports:

“While telehealth is an option to reduce some of these costs, often our clients have poor internet reception so it’s not successful. We were offering reduced prices for telehealth but due to the amount of time and resources needed to support rural families we lifted our prices to be in line with standard fees.”

Inadequate supports for First Nations participants

First Nations people 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. First Nations people also experience discrimination based upon pre-existing negative attitudes, biases and racism (e.g., being accused of substance abuse when in fact their behaviour is related to a disability). These negative experiences, such as discrimination, poor quality services or denial of access can make it difficult to establish trust with any mainstream systems.

As one member discusses:

“An extremely long amount of time needs to be spent engaging in culturally responsive and safe engagement with children and families before a referral to ECEI NDIS can even occur. i.e. it’s not an ‘easy sell’ for obvious colonisation and cultural difference reasons. For example, after spending 3 x 2 hours sessions with mum and the child, they felt confident saying finally that they believed initially that I was actually from ‘the welfare’.‟

As a result, members report that their service provision must be altered to adequately support their First Nations clients and frequently this is unpaid. For example:

Services to First Nations Clients

“Services to First nations clients require a greater amount of communication & consultation to the parents / carers / guardians. They also need better representation so it is not uncommon for me to accompany them to medical appointments, NDIS planning meetings & school / program meetings. Most of the time I do this without charge as it would mean that the face to face therapy is reduced. During a school term o f 10 weeks, I would probably have 3 no charge sessions on top of my therapy provision. More therapy sessions are also needed per week (min[imum] of 2) but most participants receive only enough for once a week (best case scenario) or fortnightly to monthly.”

“There is a lot of time required to ring and ‘yarn’ and then it seems inappropriate to charge for the phone calls that take an hour but you only discuss the child for 15 mins - part of the rapport etc to develop trust needs more chatting time. Also mental health support takes lots of time with my First Nations clients.”

It should be noted that telehealth may also not be appropriate for many remote communities due not only to poor internet accessibility, but a lack of relationship building to encourage eng agement.

As one member describes:

“It take[s] considerable time to consult and engage with community. We have been focusing on supporting our clients individually but want to assist at a community level but we aren’t able to allocate the time to ensure we can be a consistent service providing for community identified needs as we don’t have the funding to cover this for us to be able to yarn with elders and listen to their needs. We [aim] to be consistent as we know this is a barrier with services going in and pulling out again building resentment in the local community.”

The Association suggests that the planning process for First Nations participants be reviewed, with an acknowledgement of the need for greater concentrations of service. Our members discuss:

“Budgets for NDIS are inadequate for level of service required. My First Nations clients typically present later, with higher needs, reduced social capital and requiring substantially greater support. Funding should reflect the health and complexity of needs.”

“I think they would be better funded using the Complex Care Needs pathways. This ensures that there is a larger support team around the participant. It would also help if there were more Indigenous organisations to support the participants & their carers.”

Restricted access to interpreters

Speech Pathology Australia would also like to draw attention to the current inequity experienced by participants from culturally and linguistically diverse (CALD) communities in relation to interpreters. At present interpreters are not funded in NDIS plans per se, unless the need for the interpreter directly relates to the person’s disability (as in the case of Deaf or Hard of Hearing participants who use Auslan). Otherwise, only registered providers are able to access interpreters for NDIS participants, which significantly disadvantages plan and self-managed clients, or those who choose to use non-registered providers.

More than 60% of members who responded to the Association’s November 2021 survey have concerns regarding the lack of funding for interpreters for clients from CALD backgrounds accessing non-registered providers. The Association strongly believes that there is a need for access to interpreters as a matter of best practice and equity, and interpreting services should be included within plans and accessible for all NDIS participants who require them.

Suggested improvements

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. The NDIA as an employer must also 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.

Financial and actuarial modelling and forecasting of the scheme

The Association has significant concerns regarding several of the assumptions that have been made in the financial modelling for the scheme, particularly in regard to therapy pricing. The current focus on scheme sustainability appears to be resulting in attempts to instigate cost-cutting measures, with a particular target on capacity building funding. This could be disastrous for the scheme, given the thin markets that already exist within the allied health sector, and associated workforce issues, and it is concerning that it is based upon out-of-date information and inaccurate assumptions.

Similar scheme comparisons

First and foremost, it is the position of Speech Pathology Australia that the attempt to base the pricing for NDIS therapy supports upon government schemes such as Workcover and Department of Veteran’s Affairs (DVA) is inappropriate, as these funding arrangements are vastly different. DVA and Workcover do not require the presence of a disability that is, or likely to be permanent/lifelong. Therefore, it is reasonable to expect that there may be a difference in the complexity of the needs and presentations o f people seeking supports under such schemes. It also presumably affects the goals and targets of therapy, and potentially whether it is ongoing. Workcover, for instance, may by its nature comprise short term supports. The NDIS is different, as access requires evidence of a disability, and that this will be permanent, therefore it is reasonable to expect that supports will be of a more ongoing nature.

It should also be noted that the share of the markets for speech pathology under schemes such as DVA and Workcover is much smaller than under the NDIS. For example, data gathered from Speech Pathology Australia members suggest that approximately 6% of members provide services to DVA clients, compared with 46% who indicate that they provide services to NDIS participants.

The 2020 Workcover data from the NSW State Insurance Regulatory Authority reports that ‘allied health services not classified’ (of which speech pathology is only one aspect) accounted for only approximately 120 thousand episodes of service of the nearly 1 million, 8 hundred thousand episodes of allied health services overall[14]. This indicates that the market share of workcover for speech pathology supports in NSW would be less than 7%. These small market shares will be related in part to the chosen areas of practice of speech pathologists, but also potentially reflective of a reluctance to provide services at such low rates, which are unlikely to cover the cost of service.

One member describes:

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“We may reduce our fees where somebody is referred on a [chronic disease management] programme and doesn’t have sufficient funds to pay a gap fee. In this instance, we operate at a loss to provide that service to the patient.”

These government schemes, whilst based upon an insurance model, are not linked to a disability model, or designed for the needs of people with disability. If comparisons are to be made with a scheme designed for people with disability, the figures around the Department of Social Services Helping Children with Autism and Better Start packages may be a more accurate comparison. This was an unregulated market, with a yearly maximum of $6000 allocated spend for therapies from registered providers. This is similar to the average figure reported by the NDIA in their 2021 pricing consultation paper of $6,494 yearly spend by participants receiving therapy supports under the NDIS.

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 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. When considering the economic impact of the scheme, there should also be consideration given to the benefits (not just to people with disability, but for Australian society as a whole), rather than assuming the need for 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.”

Additional costs for providers

The NDIA frequently refers to the pricing cap being set at the 75th percentile of private therapy rates, hhowever, these rates were based upon data gathered in 2018, and have not accounted for inflation in the intervening years. Despite the 2020 recommendation that a comprehensive review of therapy pricing arrangements be undertaken, there has been no report released, and therefore NDIA examples and data are from the March 2019 report. These do not reflect the cost of providing services under the NDIS in 2022.

One member reports:

“The price benchmarking NDIA had used was so wrong. 10 years ago we were charging $165/hr without inflation/cost of living increases since then (eg our commercial rent has increased 3-5% each year compounding so that’s a real increase of over 40% to our overheads). That also doesn’t include the added overhead costs of dealing with NDIA eg Our audit cost was $12,000 but when we added all the staff time cost it totalled closer to $80,000.”

Additionally, speech pathologists are reporting high amounts of extraneous non-billable work that is required to adequately support NDIS participants. This includes providing case management supports, chasing payments, and additional policy and administrative tasks relating to maintaining registration, and operating under COVID. Our members report they are spending numerous hours of time supporting NDIS participants that is not billable, meaning that therapy hours within plans may not reflect the true economy of scale:

“Case coordination and planning for complex clients takes a lot more than the 1 hour that is billed. Most of my clients receive at least 2 hours of my time per session.”

“Because these clients can be incredibly complex and management takes up a lot of additional time - this

can include doing the work of the LAC who has failed to explain how the plan works or how to engage a plan manager; it can include multiple phone calls to NDSI to find out why they have gone in and changed a service booking without authorisation, or closed a plan off early; chasing up funds that have been quarantined by another service without discussion with the participant; advocating on behalf of the participant with non NDIs-related organisations (eg. preschools and schools)“

“There are growing costs for NDIIS clients. More admin time due to unscheduled review meetings. Time writing appeal reports when plans are inadequate. Time spent maintaining policies and systems to comply with quality and safeguards commission requirements.”

Underutilisation of plans

It appears that therapy supports have been specifically targeted, as an area of suggested high cost within participant plans, however it should be noted that the utilisation rates for therapy supports (under capacity building, daily living) are actually much lower than the average plan utilisation rate in each state and territory as seen from the table below.

This data is taken from the most recent quarterly report, reflecting data until December 2021. As this is only the second quarter that this detail has been released, comparative data from previous years is not available, hhowever these rates are concerning, particularly in Tasmania and the Northern Territory where utilisation of therapy budgets is below fifty percent, and almost thirty percent less than overall plan utilisation.

State Therapy Overall utilisation plan utilisation NSW 56% 75% VIC 52% 71% QLD 57% 77% WA 57% 73% SA 59% 74% TAS 48% 77% ACT 56% 75% NT 43% 73%

Therefore, it would be incorrect to suggest that the rates of committed supports indicate high levels of spending on allied health. Rather, participants are not currently utilising their allocated budgets for therapy supports, potentially due to an inability to find providers. It is also possible that this reflects limited access to therapy supports during COVID lockdowns, however this appears unlikely to be entirely explained by lockdown restrictions, given the similar discrepancies in all states and territories, with the highest level of difference seen in states that have not experienced lengthy lockdown restrictions.

It must also be noted that it is disingenuous of the Agency to propose that therapy budgets are in some way ‘blowing out’, when in reality the actualised payments are only approximately half of the figure that has been allocated to the participant.

Thin markets

The numbers reported by the Agency in the quarterly reports are aggregates of all providers registered under that particular group, however these figures do not accurately represent the provider market, especially in the allied health space. Data from Speech Pathology Australia members suggests that less than 40% of members providing NDIS supports are registered due to the overly onerous nature of registration discussed in previous submissions to the Committee.

The below table captures this data from the most recent quarterly report (Q2 Year 9, December 2021). The sections highlighted in blue indicate the groups and states where the number of active providers has

Speech Pathology Market Trends

The following information outlines trends observed in speech pathology services across various states:

State Breakdown

State	Total # of Registered Providers	Active ECS Providers	Total # of EI Plans	Active Therapeutic Supports Providers	Total # of non-EI Plans
NSW	8823	621	45425	2005	112217
VIC	6261	357	37062	1113	100177
QLD	6565	412	29260	1163	75745
WA	2273	402	7662	964	36425
SA	2442	165	14812	419	29763
TAS	1400	45	3038	201	8676
ACT	1361	59	3328	172	5773
NT	818	41	1393	106	3292

The Association can report that whilst rural and remote areas have thin markets generally for speech pathology, this is becoming more and more of an issue in metropolitan areas including Sydney and Melbourne, as well as less populated jurisdictions such as ACT and Tasmania. It is clear from reports of lengthy waitlists, poor utilisation of therapy funds, and direct reports that participants are experiencing difficulty in accessing therapy supports.

Speech Pathology Australia is fielding many calls from parents/participants who have been unable to find a speech pathologist, even in metropolitan areas. November 2021 member survey data indicates that almost 20% of respondents had a waiting list of more than 6 months for services, with a further 20% having a waiting list that is currently closed due to a lack of client turnover. Only 5% of respondents indicated that they are able to take on new referrals as they arise. One member reports:

“I recently closed it as it was over 12month wait and [I] was getting new enquiries daily. NDIS clients tend to have a range of ongoing needs with slower turnover.”

There are also apparently large waitlists to access providers providing supports in specific clinical areas such as Alternative and Augmentative Communication (AAC), mealtime supports, and providers able to work with participants with behaviours of concern, or with complex needs - all of which was reported within the recent survey data. The percentage indicates the number of respondents who have experienced difficulty in finding providers in those particular areas.

As per the table above, more than 82% of respondents to the November 2021 survey described that they have noted thin markets (including participants reporting not being able to find a provider) for AAC supports.

Workforce issues

Workforce expansion and worker retention is a major issue facing the speech pathology sector. Data from seek.com17 indicates that speech pathology positions are the hardest to fill roles of any profession in every state and territory except Victoria (where the profession is 5th) and Western Australia (where it is 11th), indicating that demand is far outstripping supply. There are several challenges in attracting and retaining the speech pathologist workforce to provide services through the NDIS and these are even more pronounced for regional and remote communities as discussed elsewhere in this submission. Only 7% of survey respondents indicated that they have been able to employ new speech pathologists as needed.

Members report:

“Our clinic is in a regional area. Many service providers I know are unable to recruit Speech Pathologists [with no] response to advertisements. Need to compete with hospital wages/conditions [which] is impossible to maintain as well as registration fees and the many compliance activities.”

“I advertise for over 3 months and might only have 1 applicant. I offer 20% above award wages, $1500 PD budget and phone, and cap of 25 billable hours per week, yet I cant find anyone who wants to work in paid private practice.”

Speech pathology services typically delivered by a small sector of speech pathologists have now seen increased demand and movement away from a small number of disability providers and an exp ectation for a greater number of generalist speech pathologists, or those early in their careers, to provide these more complex services. At present the NDIS does not remunerate for supervision or training of staff, therefore dis-incentivising some organisations to provide it, and leaving limited avenues for the disability workforce to be upskilled and receive appropriate supports in these more complex areas.

To maintain the current workforce and encourage the entry of new providers, there is a need to ensure new providers have appropriate supports e.g., supervision, work shadowing, upskilling, and that more experienced providers can charge for this. Incentives for providers working in the disability space to take on early career providers may also be helpful in this space.

 f. The measures intended to ensure the financial sustainability of the NDIS (e.g.

governance, oversight and administrative measures).

NDIS Data

The Association has concerns around the way that data is currently presented by the NDIA as it is not accessible. The concept of ‘accessible formats’ should be extended to incorporate communication accessibility, with a concerted effort by the Agency to provide information in Easy English and other formats to make all information, and data on the NDIS website, accessible to every participant or potential participant, and the general public.

Additionally, data is needed in several areas that are currently not published publicly. For instance, the waiting times for assistive technology, and where the main points of delay are most commonly experienced;

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the reasoning around the inclusion (or not) of support co-ordination and the potential difference in plan utilisation with and without this service. Most importantly, accurate and transparent data around service providers is desperately required.

Data regarding providers

Specific data regarding the breakdown of providers by qualification group would be appropriate to provide, as these numbers are frequently requested regarding funding allocation, and would assist when identifying issues that require advocacy. For example, currently physiotherapists in some states have a higher funding banding due to a thin market reported in March 2019, but this data, or more recent comparative information across other allied health professions has not been released. Speech Pathology Australia does not believe that there should be differing prices for allied health services, or that physiotherapy should be valued above other allied health professions.

The NDIA has frequently placed the onus of proof of thin markets, or gaps within the market, upon providers themselves. The Association would instead suggest that the Agency analyses the significant amount of data already gathered, and release this accordingly. Additionally, it should be noted that plan utilisation data has only been released for the last two quarters, and is not presented in a transparent way. The table presented earlier within this submission was put together by Speech Pathology Australia staff analysing the data within the 661 page quarterly report, the percentages of plan utilisation by funding type are not provided, only the raw data regarding committed versus actualised supports.

The Association would also urge the NDIA to consider preventative market approaches, rather than just reactionary interventions. Many of the short-term interventions to address thin markets currently used by the NDIA could be interpreted as championing certain providers, and skewing the market toward provision of services by larger providers. Data must be analysed and widely published regarding current, emerging, and potential thin markets and broader approaches put in place to address these issues in the longer term, if thin markets are to be avoided.

g. The ongoing measures to reform the scheme

The new Early Childhood approach

The Association has raised concerns regarding aspects of the new early childhood approach, in particular the notion of mandatory registration for this group, and powers being given to NDIS staff to direct participants to certain providers. There is a thin market for registered speech pathologists, with less than 40% of all Speech Pathology Australia members who see NDIS clients being registered. Many of our members have chosen not to register, or re-register under the Commission, due to the overly onerous registration process, in addition to high financial burden that is not proportionate to their businesses, especially for certification (which is required for the Early Childhood group).

Speech Pathology Australia receives regular communication from speech pathologists who are delaying entering the NDIS market, reducing the share of their practice caseload of NDIS clients and/or restricting service to self-managed or plan-managed clients only, in order to avoid the costs associated with excessive administrative burden. Simply put, registration in its current form is not sustainable for small businesses, and the low numbers of Speech Pathology Australia members who are registered is reflective of the difficulties with the registration process, and administrative burden, rather than compliance. Given the extremely low numbers of therapists currently registered to provide Early Childhood Supports, if registration was mandated, it would likely see the market collapse, with the only options for families being large providers that previously existed under state-based funding arrangements.

Key worker model

Concurrently there appears to be an assumption by the NDIA that the key wo rker model approach is the only effective model for young children, with a corresponding push to use larger providers who were formerly providing these services under state-based funding. The Association would disagree with this in

Principle

even if not using a key worker approach, speech pathologists utilise techniques and work in a multi-disciplinary way with families in ways that align with best practice principles for early childhood, as part of ethical practice, as well as part of the standards within the relevant registration module.

It may be a matter of logistics in that the key worker model is difficult to enact for small businesses and sole traders, hower these providers may still be very experienced in the early childhood space, with extens ive skills and knowledge to assist families to build their capacity. Some families may also prefer not to have a key worker to enable them to receive their supports from the provider of their chosen discipline, rather than a key worker who may be from a different discipline. To deny families access to these potentially smaller therapy services, and un-registered providers would create extensive disadvantage in the sector, reducing choice and control and further contributing to the long wait times for services in an already thin market.

Plan flexibility and functional capacity

In regard to plan flexibility, this is supported by the Association as a way to address current shortfalls in the allocation of funds in the areas requested by participants, in additio n to fixing planning errors in the quarantining of funds that mean participants cannot use their funds as intended.

In terms of improving functional capacity, similar to issues raised in section F, the Association would ask for greater transparency regarding how the NDIA currently assesses functional capacity. Claims have recently been made that NDIS participants are demonstrating reductions in functional capacity 18, however the measures used to determine this are unknown. Speech Pathology Australia has previously discussed the inherent problems with several of the measures that are currently used by the NDIA, particularly that they are not being used as designed and were never intended to be used in this way, and therefore are not fit for this purpose.

The process of gathering data on functional capacity requires investigation and co -design with people with disability and experts within the sector to ensure that the data around this issue is truly reflective of the experiences of people with disability. It is critical to get this right, given the serious implications and potential impacts upon participants of the NDIS.

Recommendations

In summary, Speech Pathology Australia recommends the following:

• The NDIA publish clear and communication accessible information regarding planning, and planning decisions and ensure 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.

• The intersection between NDIS and non-NDIS sectors such as justice, aged care and health to be reviewed with an aim for significant overhaul of processes and procedures to improve integration and connection between sectors.

• Develop specific pathways and processes to address the needs of people with disability who are also culturally and linguistically diverse, or First Nations people.

• The Agency to investigate the current therapy market when discussing benchmarking, using up to date data, and acknowledging the potential impacts of thin markets.

• Data regarding utilisation of plans by funding type, number of active registered providers by qualification and other indicators of emerging and potential thin markets to be published in a transparent format.

• Investigate ways to entice providers into the market, and incentivise others to remain in the scheme, with the burden of registration to be reviewed.

• Early Childhood Supports should be reclassified as a low-risk support to minimise the burden of registration, and ensure that it does not become a group requiring mandatory registration.

• Provide travel budgets for rural and remote participants that are separate to their therapy budget allocation.

• Increase access to interpreters to include all NDIS participants, regardless of how they are managed , or whether the provider is registered.

• Build the capacity of the NDIS sector through grants for targeted training around augmentative and alternative communication and other clinical areas such as mealtime management and dysphagia where there are thin markets.

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

• The process of gathering data around functional capacity should be reviewed and co -designed with people with disability, and stakeholders within the sector.

We hope you find our feedback useful. If Speech Pathology Australia can assist in any other way or provide additional information please contact