NDIA Accountability Project

Participant Experience in Rural, Regional and Remote Australia

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Australia

Joint Standing Committee on the NDIS Inquiry into the NDIS

Participant Experience in Rural,

Regional and Remote Australia

8th March 2024

Recipient

Joint Standing Committee on the NDIS

NDIS.joint@aph.gov.au

Speech Pathology Australia contact

John Foley, General Manager Policy and Advocacy

A Level 1/114 William Street Melbourne VIC 3000 | T 03 9642 4899

E policy@speechpathologyaustralia.org.au | W www.speechpathologyaustralia.org.au

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About Speech Pathology Australia

Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing more than 14,000 members. Speech pathologists are university trained allied health professionals with expertise in the diagnosis, assessment, and treatment of communication and swallowing difficulties.

The Association empowers speech pathologists and advocates for improved access to speech pathology services to ensure everyone has effective communication and swallowing throughout their lives. The Association ensures speech pathologists are suitably trained, qualified and safe to practise through its certification program.

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Summary

In preparation for this submission, Speech Pathology Australia has gathered reports from members, including conducting interviews with speech pathologists working in rural, regional and remote areas. SPA also conducted a survey all members providing NDIS services in February 2024 which garnered more than 900 responses. Of this, there were 258 respondents who identified that they worked in a rural, regional or remote area. Data is presented from the interviews and responses to this survey to reflect the issues being experienced by speech pathologists in these areas across Australia.

This submission should be read in conjunction with SPA’s submission to the 2023/2024 Annual Pricing Review where significant issues with thin markets, workforce shortages and the strong risk of market failure due to stagnant pricing are clearly identified.

“The perception that our profession is rorting taxpayer money is so ludicrous if I actually think about how deeply it is rooted in sexism and devaluing the care workforce it makes me want to scream. There are definitely dodgy providers out there…but no one who is doing a good job is out here making bank, and I am so concerned about the longevity and maintaining experienced clinicians in our workforce, the vicarious trauma, complexity and sheer demand of our caseload is deeply worrying.” QLD regional member

Overwhelmingly speech pathologists in rural regional and remote areas are reporting difficulties with participant access to NDIS services; challenges with financial sustainability and workforce; and concerns that the NDIS system is not fit for purpose in these areas, particularly for Aboriginal and Torres Strait Islander peoples. Accordingly, we have made recommendations in these areas and linked them to the terms of reference where possible.

Recommendations

  1. The NDIA must provide specific additional training for NDIA staff who are working with rural, regional and remote participants.

  2. A specific workforce strategy must be created to support the provision of allied health services in rural, regional and remote areas.

  3. Additional and separate travel funding must be provided for rural, regional and remote participants to specifically promote access to services.

  4. The NDIS system of supports is reconsidered with regard to Aboriginal and Torres Strait Islander peoples and people from culturally and linguistically diverse backgrounds. Relationship building, cultural responsiveness and integration with appropriate services within communities led by those communities must be foundational principles of this new system.

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Discussion

The experience of applicants and participants in rural, regional and remote areas at all stages of the NDIS.

Recommendation

The NDIA must provide specific additional training for NDIA staff who are working with rural, regional and remote participants.

There has been widespread discussion- including by the Joint Standing Committee itself- of the inadequate training and experience with disability that is displayed by NDIA staff. It is clear from the survey of our members that this is exacerbated within rural regional and remote areas by a lack of understanding of the issues experienced by people in these communities. Specifically, greater degrees of chronic health concerns, and a higher burden of disease by degree of remoteness, coupled with the lowest levels of access to healthcarei.

“Information about the NDIS is poorly presented to the public, including clinicians. Even when contacting NDIS staff, different answers are provided for the same question and often no-one to escalate concerns to. Funding approval is far too subjective and dependent on how individual planners interpret the guidelines. NDIS planners often step way outside of their scope, recommending particular therapeutic approaches or equipment without the appropriate knowledge.” QLD remote

In these areas, people often have lower educational attainmentii, and limited health literacy, therefore being able to access and comprehend information provided by NDIA or contracted services is extremely challenging. The issue of the complexity of the NDIS system and the resultant stress for participants and their families was also a significant theme to come out of the NDIS Reviewiii.

“Have NDIS planners undergo training before being able to discuss supports and funding amounts with families so they are aware of the strain it can be on families and their communities when they can either not access services or be denied access to a support services because the planner does not see that it is necessary.” WA rural member

This poor understanding of disability and the needs of people in these areas by NDIA staff can damage trust in the system. Poor cultural awareness and a lack of cultural responsiveness compounds these issues for Aboriginal and Torres Strait Islander peoples in these areas.

Participants in rural, regional and remote areas require clear information regarding NDIS processes and requirements and an understanding of the need for wrap around supports, inclusive of ‘soft supports’ and additional time allocation to build trust and rapport with service providers.

“There is also no way that clients with a disability can independently call NDIS to get information about decisions or make queries - even highly educated parents such as paediatricians are struggling to navigate these processes!” WA metro member

Workforce shortages within the NDIA can have a negative impact on planning services, particularly in the early childhood space. Members have reported that Early Childhood partner organisations in rural

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areas have closed their books and are not accepting new NDIS referrals. Otherwise, there are significant waiting times, which are detrimental to the child and family who are waiting for services. It creates a lack of confidence in the NDIA for the family and does not follow best practice of early intervention. The lack of response or engagement from NDIA staff also creates an additional opportunity cost whereby critical acquisition periods for the child may be missed.

“In my experience, often these clients haven’t been able to access early intervention and supports because of their location and the practical difficulties associated with access, so sadly end up with higher needs long-term.” QLD regional member

“In my experience, there is limited contact between NDIA Remote Planners and health professionals servicing each area, resulting in some participants having a plan but not knowing that they can use it. This leads to some clients waiting up to 6 months to utilise their plan when therapists are visiting those areas regularly. I would also like to see more NDIA meetings on the ground in communities, so that families and clients are able to voice how they want their services through NDIS provided at an NDIA level. I still find that there is a lot of confusion from families about the difference

between NDIA Planners, Plan Managers, and Support

Coordination.” Metro QLD member

There can also be unintended impacts of contracting out planning supports to other organisations. These organisations may be the only point of service for the NDIA planning services in the area, but then provide paid NDIA provider services such as support coordination or therapy supports. This is a conflict of interest but can also result in a monopoly in thin markets, limiting the choice and control of participants. Concurrently there are reports of support coordinators and Local Area Coordinators attempting to garner additional payment for referrals to other services; or attempting to pressure providers to drop the price of their services.

The ability of rural, regional and remote participants to access services and supports to enable choice and control, with reference to availability, accessibility, cost and durability.

Recommendation

A specific workforce strategy must be created to support the provision of allied health services in rural, regional and remote areas.

The Speech Pathology Australia workforce reportiv describes that there are significant thin markets across Australia, with high demand for speech pathology supports evidenced by long waiting times for services. These waiting lists for services are higher than in metropolitan areas, with a third of NDIS providers working in rural, regional and remote areas reporting a waiting list of more than 6 months. Less than 6% of those members working in these areas are able to take on new referrals as they arise (compared with 10% nationally across the survey).

“It is becoming increasingly challenging to access timely speech pathology services when a person is an NDIS participant in the NT, which seems to be linked to high staff turnover, challenges obtaining experienced therapists (3+ years), and limited infrastructure external to Dept of Health and Dept of Education in remote communities.” NT metro member

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“Minimal movement of clients due to high NDIS caseload means that waiting lists are growing in length. Minimal ability to take on more complex clients due to managing casemix and minimising risk of clinician burnout. Waiting times may be longer for more complex clients.” QLD rural member

There are a range of difficulties inherent in the recruitment and retention of allied health providers in these areas including a shortage of housing and a need to be clinically skilled across a much greater breadth than is required in metropolitan areas where specialists are available. For example, one of our members accepted a position in rural NSW but was forced to live in a caravan park for a month before she could find accommodation.

Only 2.3% of members in rural, regional and remote areas report being able to recruit speech pathologists to work in their businesses. Some rural and remote towns do not have a speech pathologist in their town and service users are required to travel 2+ hours or to access telehealth services (which can be a challenge for disadvantaged communities who may not have the technology or internet to support this as a viable option).

“In a rural location, I find it extremely difficult for clients to access a full range of allied health services, with many coming from the closest regional centre. These services are intermittent and subject to interruptions from staff changes, weather events, and changes within the company/business delivering the service. Visiting services also charge additional travel fees and this eats quickly into a participant’s overall budget.” QLD rural member

“In regional areas, the quality of services provided are directly impacted by difficulties hiring and maintaining professionals. High turnover of staff impacts a persons ability to meet and progress towards their NDIS goals. Families under the NDIS often report they are stressed their therapist will leave and they will have no-one to support them anymore. Children in regional areas have just as much right to access quality services than those in metropolitan areas.” QLD regional member

These difficulties with workforce shortages are directly impacting the ability of participants to spend the therapy budgets allocated within their plans. Utilisation data from the latest quarterly reportv, reflecting the 12 months to the end of December 2023 clearly shows that participants are not spending their therapy budgets. The committed supports for ‘capacity building, daily living’ compared with the actual payment data in this category is presented in the table below.

State  Committed   Actualised        Utilisation   Overall plan  Difference

funding      payments ($m)  (%)           utilisation    (%)

($m) (%)

NSW  2,349       1448             61         80         19

VIC    2,254       1321             58         76         18

QLD   1,737       1021             58         77         19

WA    748         448              59         74         15

SA     654        415              63         77         14

TAS   151         75               49         74         25

ACT   119         70               58         77         19

NT    90          42               46         78         32

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Participants in most states and territories are only able to spend up to 60% of their capacity building budgets, which is considerably less than their overall plan utilisation in each state. Of particular concern are the rates of utilisation in Tasmania and the Northern Territory where participants are spending less than half of the funding that has been allocated for therapy services. In the Northern Territory this is a full 32% less than their overall plan utilisation.

It must be noted that whilst there are increased numbers of speech pathologists graduating from university courses, this does not always translate to an available workforce in rural, regional and remote areas, particularly in the short term. A specific and targeted workforce strategy is needed.

This could include a range of interventions such as:

  • Support for universities to establish programs within rural and regional areas; students from these areas would have priority of access.

  • Support for potential students to be able to attend university programmes whilst still remaining in their communities.

  • Linking in with housing that has been previously established for the public health workforce.

  • Providing incentives for rural, regional and remote practitioners to take on students for clinical placements with an associated support system of short-term housing.

  • The extension of existing allied health scholarship opportunities within the health system to incorporate positions within disability services and organisations.

  • Extension of the workforce incentive program with a specific pathway for allied health providers as well as GPs.

Recommendation

Additional and separate travel funding must be provided for rural, regional and remote participants to specifically promote access to services.

Currently the lack of an additional travel budget effectively discriminates against participants in rural, regional and remote areas and their access to services. It has been reported that clients all receive similar funding despite the differing levels of access and specific geographical needs. Travel fees must be taken from the participant’s budget for therapy, thus they actually receive less therapy hours than has been determined to be reasonable and necessary. This does not take into account the significant impact of thin markets in rural, regional and remote areas, where travel is essential in order to receive services.

“I cover a large geographical area which includes multiple towns (up to about 20) and so lining up clients to help them minimise travel expenses can be very difficult as I zig zag my way across the region. I can’t set myself up in one office as this is not economically feasible - and would be a barrier to clients who live up to 2 hours away and have access to limited public transport.” NSW rural member

“Families living in rural or remote communities need to have NDIS planners who understand the impacts of access to basic services are likely to be very different to those who are living in MMM 1-3 and MUST include considerations for clinical travel in funding allowances to be able to provide effective therapy, even if sessions are a combination of Telehealth and face to face sessions.” WA rural member

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    • Pathology ~ Australia

Only 17% of the 2024 rural, regional and remote survey respondents feel like the current NDIS pricing

arrangements are suitable  for regional, remote or very remote areas. 73%  feel  like there are

amendments that could be made to pricing arrangements or service models to better recognise the needs of participants in these areas. Overwhelmingly members have identified it is the arrangements with regard to travel that must be improved. Almost 84% identified that they have concerns regarding the fact that no additional travel is allocated in rural, regional and remote areas.

The refusal by the NDIA to provide budgets for travel appears to be based upon the erroneous assumption that there will be providers accessible in all areas, which due to workforce shortages is not the case. There are widespread reports of difficulties in accessing NDIS services due to lack of availability of services in rural regional and remote areas. Concurrently there is a lack of funding for travel for existing providers to service these areas, therefore providers are faced with an ethical dilemma of providing travel unpaid, or at a financial loss to their business, or denying participants services in these areas.

“Clinicians need to be funded for their full travel time, rather than having travel time capped at 1 hour. When I see my remote clients I lose an hour of travel and choose to do that extra travel pro bono for the client (I am a sole trader and can choose to do this).” TAS regional member

“Even with charging my clients travel I do not cover my travel and accommodation costs. I keep doing it because I enjoy working with those clients and if I stopped they would have no consistent services. For me this is a moral/ethical decision. It is an added cost to my business and definitely not a sensible business decision. I feel the NDIS currently relies heavily on goodwill from allied health. Unfortunately goodwill is not in endless supply. I fear that I will burn out and that will be the end of my goodwill.” QLD regional member

The majority of private speech pathology practices in rural, regional and remote areas are small or sole trader organisations, with more than 36% of the survey respondents who work with NDIS participants identifying as sole traders, and a further 23% as small providers with less than five allied health professionals. Businesses at this small scale have restricted infrastructure and resources and are often operating with limited administrative support and thin margins.

There is no possibility of ‘efficiencies’ within small and solo practices, without compromising on the amount or quality of service. Businesses are experiencing financial stress due to increases in costs of doing business, without corresponding increases in NDIS prices. Simply put, they cannot afford to continue to absorb additional costs (particularly travel) and remain viable.

“I’m often running at a financial loss to support those in rural areas. This isn’t sustainable from a business perspective but how is a therapist meant to balance being compassionate and caring, while still making ends meet?” QLD rural member

“I am having to work more hours and charge for services I have previously done on good will (non face to face) and taking in less profit yet if I close my practice there will be no speech therapy services or extremely limited services available for the community/ remote area that I live and work in.” VIC rural member

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Concurrently, providers must be wary of unrealistic efficiency targets and expectations leading to staff burnout. Burnout is an issue of grave concern to Speech Pathology Australia, as it poses a significant risk to the future viability of a workforce that is already overstretched.

“Recruitment is a significant and ongoing challenge of running a small business. There is a high turnover of early career speech pathologists as they travel or change jobs in the hope of finding better working conditions (better pay, more support, less billables). There is a high emotional toll to supporting complex clients and the constant feeling of burnout. Senior therapists are leaving the profession to work in less stressful positions if they are financially able to do so e.g. teacher’s aides, support workers, cleaners.” NSW metro member

“Nationally, speech pathologist are in high demand. In regional areas, this demand is higher. Working in thin markets puts therapists at risk of leaving the profession, due to the pressure and potential for serious burnout, when working under high demand with limited earning capacity (under the current NDIS price guide). In addition, thin markets increase staff turnover making it more difficult for children and their families to achieve their NDIS goals.” QLD regional member

The second incorrect assumption inherent in the lack of travel funding is that services can be accessed via telehealth. Whilst the uptake of telehealth increased during periods of lockdown in 2020 and 2021, it is a model of service delivery that is not always possible or preferrable for participants in rural, regional and remote areas. There are infrastructure issues with regard to sufficient internet access and stability. Our members also report that many of their clients in these areas do not have access to digital technologies and corresponding experience low digital literacy. Additionally, these services may not be culturally responsive, or appropriate for Aboriginal and Torres Strait Islander participants.

“I visit remote locations MMM 5-6…If I charged what it cost me to go out then my clients don’t get enough therapy. The NDIS says they must do telehealth then, but these clients are complex, they have complex AAC needs, they have parents who do not have capacity to set up a telehealth session or assist the therapist to engage…So my business wears the cost because if I don’t go out to this town no-one else will and I care that these clients can communicate.” QLD regional member

Importantly, the provision of services via telehealth still requires a workforce to deliver these services, which due to long term shortages, does not currently exist in the numbers needed to meet demand.

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The particular experience of Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio-economic backgrounds, with the NDIS

Recommendation

The NDIS system of supports is reconsidered with regard to Aboriginal and Torres Strait Islander peoples and people from culturally and linguistically diverse backgrounds. Relationship building, cultural responsiveness and integration with appropriate services within communities must be foundational principles of this new system.

“I used to work with a lot of families who were Aboriginal or Torres Strait Islanders when I worked for the NSW government disability service but under NDIS those same families are struggling to connect with the same range of services. These families took years to build strong relationships with [previous] case managers and therapists and were traumatised by the rapid transition to NDIS.” NSW rural member

“We have a partnership with an Aboriginal school that have endless numbers of children who are eligible for the scheme, we are WAITING to see these clients. They can’t get access, the system is broken for Aboriginal peoples. Access needs to be made a lot lot easier.” QLD regional member

It has been clearly communicated through the NDIS Review that NDIS services are not culturally responsive to the needs of Aboriginal and Torres Strait Islander peoples at all stages of the process. The NDIS system frequently does not align with Aboriginal and Torres Strait Islander knowledges and ways of being and doing. Our members report that this is particularly problematic with regard to accessing the NDIS. The western approach, with an overreliance on extensive written documents is inappropriate for some Aboriginal and Torres Strait Islander peoples; the known barriers with regard to language and literacyvi must be acknowledged.

“Culturally responsive assessments also take longer to complete in my experience. For example, language sampling using oral narratives or conversations in play is evidenced as the gold standard for language assessment for Aboriginal and Torres Strait Islander children. In transcribing the sample, conferring with local interpreters or knowledge holders to gain an understanding of home language structures, and then interpreting the sample with this additional information to ascertain if a client requires supports takes substantially longer than a standardised assessment. I continue to use language sampling as it is considered the current gold-standard, however, I am also acutely aware that as their assessment process takes longer, the cost of this service is also higher.” Metro QLD member

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“I feel our Aboriginal and/or Torres Strait Islander clients, along with our disadvantaged communities in general, are at risk of not getting access to services because the system is still too hard to navigate, and is somewhat dependent on a parent’s ability to advocate for their child. Our Aboriginal and/or Torres Strait Islander clients need more flexible service delivery, more liaison with community services and other providers, and more time to build relationships and trust in order to work towards positive therapeutic outcomes.” QLD rural member

Members also report feeling compromised by the NDIS funding structures in their ability to provide culturally responsive supports, specifically adequate time to build rapport and yarn, and face to face services. There is a need to build relationship, and telehealth may not allow engagement, even in situations where it is accessible.

“When working in very remote areas, my caseload comprises of 100% clients (and families) who identify as Aboriginal…visits at home also tend to be longer in duration, often taking 75mins to 90mins to allow for in-depth discussions and yarning, compared to 45mins to 60mins sessions which may be the basis of funding hour calculations at planning meetings.” Metro QLD member

It is clear that the NDIS system is not fit for purpose and needs to be redesigned in consultation with Aboriginal and Torres Strait Islander peoples. Relationship building, cultural responsiveness and integration with appropriate Aboriginal and Torres Strait Islander led services within communities must be foundational principles of any new system.

Bi-directional training is essential. Specifically, training and support for Aboriginal and Torres Strait Islander led community organisations regarding the NDIS, with recognition that current NDIS resources are insufficient and unlikely to be fit for purpose for individual communities. There must be a commitment by the NDIA to ensure that Aboriginal and Torres Strait Islander led organisations in Community are consistently resourced to maintain continuity and sustainability of these supports. Concurrently there must be training for NDIA staff regarding culturally responsive approaches, supports and ways of being and doing.

People from culturally and linguistically diverse communities also experience difficulties with the NDIS. Our members report that these issues in rural, regional and remote areas include but not limited to accessing the scheme, receiving the same amount of funding within plans as other participants, and a lack of acknowledgment of the particular needs of these communities. Specific consultation with these communities and authentic co-design around modifications for their needs is essential.

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