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T 61396424899 office@speechpathologyaustralia.org.au Melbourne Victoria 3000 F 61396424922 www.speechpathologyaustralia.org.au

6 Speech

Pathology g& Australia

29 October 2021

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

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

Dear Mr Andrews,

Re: Interim Report NDIS Implementation and Forecasting

Speech Pathology Australia (the Association) is the national peak body for speech pathologists in Australia, representing more than 12,000 members. Speech pathologists are university-trained allied health professionals with expertise in the assessment, diagnosis and treatment of communication and swallowing disabilities. Speech pathologists provide services across the lifespan, and work across a range of business structures, including large companies, multi-disciplinary organisations, and small or sole private practices.

The Association welcomes the opportunity to provide feedback to the Joint Standing Committee for its interim report on NDIS implementation and forecasting. Speech Pathology Australia wishes to draw the Committee’s attention to several key issues which will form the basis of a longer submission prior to the final report in February 2022. These issues have been grouped under the terms of reference that are relevant at this time.

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 particular 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. 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.

Without access to the NDIS, people with communication disabilities are extremely limited in avenues for speech pathology support. Whilst there has been much discussion of Tier 2 supports, in practice these are restricted and many supports- such as independent community hubs for assistive technology- have been shut down due to lack of funding. Alternatively, in order to remain viable due to

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

Currently there are significant difficulties regarding the interface between NDIS and non-NDIS services. Several specific examples have been raised in regards to both transition and interaction with the justice system1, and the health system2 in reports from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The Association has noted there is a lack of knowledge around disability and therefore accommodations made for participants of the NDIS when they need to interact with the health system. There are also extensive barriers to participants being able to use their NDIS funding to ensure continuity of supports whilst in hospital settings, and often significant challenges transitioning clients to suitable NDIS services following acute health incidents.

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 in regards 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 NDSI, but there is a lack of any alternate services. 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. The new regulatory requirements 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.

Inequitable Access to Supports under NDIS

area co-ordinators (LACs), frequently have little to no knowledge or experience with disability, with the burden of explaining disability falling upon the family or participant.

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 pathology, as neither they nor the NDIA 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.

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. Training, and access to relevant and consistent information for participants and families who are trying to navigate the NDIS is also vital, and it should be noted that this was part of the original role of LACs, however due to a lack of staffing, few LACs have capacity to undertake this work. The information, processes, plans, and NDIS website should also be reviewed and modified to ensure they are communication accessible, and then clearly explained to participants and families.

Assistive Technology

Speech Pathology Australia 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 Disability3, 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

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 Read 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; 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

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, particularly in the allied health space. 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. It would be far more transparent to report on the number of active providers (those who have actually made a claim under that item during that quarter) as a reflection of how few providers are registered and providing services to agency-managed participants and associated thin markets.

Specific data regarding the breakdown of providers by qualification group would also be appropriate to provide, as these numbers are frequently requested regarding funding allocation, and would assist when identifying issues that require advocacy, e.g. around price setting. For example, currently physiotherapists in some states have a higher funding banding due to a thin market reported by the NDIA, but this data, or comparative information across other allied health professions has not been released. 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 NDIA analyses the significant amount of data they already gather, and release this accordingly.

Thin markets

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 grave concerns regarding aspects of the new early childhood approach, in particular the notion of mandatory registration for this group, and powers being given to NDIA staff to

Key worker model

Concurrently there appears to be an assumption by the NDIA that the key worker 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, as, even if not using a key worker approach, speech pathologists utilise techniques and work with families in ways that align with best practice principles for early childhood, as part of ethical practice. It may be a matter of logistics in that the key worker model is difficult to enact for small businesses and sole traders, however these providers may still be very experienced in the early childhood space, with extensive skills and knowledge to assist families to build their capacity. 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 regards 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 addition 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 capacity4, hhowever 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.

Inappropriate use of Allied Health Assistants

The Association has received 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. 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.

Responsibility for assistive technology

It has recently come to the attention of Speech Pathology Australia that in the event a piece of prescribed assistive technology should no longer meet the client’s needs, the responsibility for replacement of the equipment would lie with the prescriber. This is not dependent upon the reason why the equipment is no longer appropriate, such as a change in the participant’s needs or disability. There are also no limitations regarding the length of time since the prescription, or whether the participant is now working with a different therapist. In conjunction with the significant delays in the funding of assistive technology, this is an unrealistic burden to be placed upon the prescribing therapist.

It also disadvantages those people with progressive disabilities, who may have fluctuating needs, or those who have more complex factors influencing prescription whereby the Agency is able to deny replacement of their equipment, instead expecting this to be claimed from the prescriber’s insurance. When such lengthy delays are being experienced, it is highly likely that assistive technology may no longer meet the participant’s progressive needs, creating a higher risk profile for those working with these types of participants. The Association has concerns that by having this risk be wholly assumed by the initial prescriber, this will further deter allied health providers from entering the prescriber market, which is already extremely thin.

Evidence-based practice concerns

The Association would like to draw the Committee’s attention to a safeguarding issue that has been reported by several Speech Pathology Australia members. At present there is no requirement on behalf of the NDIA for providers to use evidence-based practice, or provide evidence if they make certain treatment claims. Qualified allied health providers are required to use evidence to inform practice and not make unsubstantiated claims regarding the benefits of services they offer, as they are bound by their relevant codes of conduct, codes of ethics, and requirements of governing bodies such as the Australian Health Practitioner Regulation Authority (AHPRA) and Speech Pathology Australia. However, non-qualified professionals are not subject to any similar oversight or regulation. The NDIS code of conduct, which does apply to all providers, is silent on the subject of evidence-based practice and advertising.

This puts participants and families, particularly those who are more vulnerable, at risk of wasting their funds on non-evidence based, and in some cases potentially harmful practices due to unfounded

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promises and emotive advertising. There is also an opportunity cost in that they may miss out on therapies that are evidence-based and may have been of assistance in critical early intervention periods while accessing inappropriate services.

The Association would therefore suggest an expansion of the NDIA safeguarding processes and/or fraud taskforce to include instances whereby a non-registered provider, who does not have any qualifications or is otherwise not subject to any other regulation, is still subject to complaints raised by a participant or a qualified professional. Additionally, a code of ethics regarding advertising to NDIS participants to be developed, potentially based upon the National Law, AHPRA guidelines, Speech Pathology Australia’s Code of Ethics - Advertising policy, and endorsed by the Australian Competition and Consumer Commission.

We hope you find our feedback useful. If Speech Pathology Australia can assist in any other way or provide additional information please contact Ms Amy Fitzpatrick, Senior Advisor Disability, on 03 9642 4899 . Thank you for the opportunity to provide feedback.

Yours faithfully

Tim Kittel National President