NDIS participant experience in Regional, Rural and Remote Australia

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Submission to NDIS Joint Standing

Committee

NDIS Participant Experience in Regional, Rural and Remote

Australia

Disability Advocacy NSW  | website: da.org.au  | Email: da@da.org.au  | Phone 1300 365 085

About Disability Advocacy NSW (DA)

DA has over 35 years of experience providing individual advocacy to all people with

disability of any age. The organisation services over two thirds of NSW, making it the

largest individual advocacy disability organisation within NSW.

While DA has a presence in Sydney, it has a strong commitment to regional, rural, and

remote (RRR) areas in NSW. With local disability advocates - on the ground - in

Armidale,  Bathurst, Broken  Hill,  the  Blue  Mountains,  Coffs  Harbour, Dubbo,

Newcastle, Port Macquarie, Tamworth, and Taree – DA has firsthand insights and

observations of the lived experiences of PWD and their families living in these areas.

DA’s systemic advocacy draws on coalface information from  clients,  disability

advocates, and the disability sector more broadly to identify and address emerging

policy issues. In this submission, we focus on issues relating to thin markets and the

impacts this has on different stages of the NDIS, the effectiveness of the scheme in

RRR areas, and choice and control of participants.

In addition to  this submission, we  invite members of the NDIS Joint Standing

Committee to conduct site visits to our RRR offices alongside our policy lead (contact

details below) to hear more about the experiences of PWD living in RRR areas.

Contact

Dr Cherry Baylosis

Policy Officer at DANSW

42 Great Western Highway

Valley Heights

Disability Advocacy NSW  | website: da.org.au  | Email: da@da.org.au  | Phone 1300 365 085        Page 2

Introduction

It is widely acknowledged that there are fewer services in RRR areas. An increase in

rurality is generally associated with a decrease in availability of services. Accessing

supports can be difficult without a NDIS plan for people with disability living in RRR

areas. In many instances, the scheme has not stimulated the growth of a support

service market. Instead, it has seen the availability of services decrease in some RRR

areas. With the move to an individualised funding model, we saw block-funded

government and non-government services fold, become defunded, absorbed into

larger services or transition to a fee-for service model to compete in a market driven

model. Not only has this led to a lack of diversity of services in some RRR areas, but

it has meant that service providers face precarious financial situations. Smaller,

independent service providers are often drowned out against larger service providers

that can monopolise areas, leading to lack of choice of control for participants.

Alongside this, some service providers have started to refuse to service people who

are non-NDIS participants because they prefer to service NDIS participants where

they can charge higher rates.

Thin markets have wider implications that go beyond a limited number of services to

choose from – it contributes to the degradation of service quality and professionalism.

Having a limited amount, or no services available can fuel a sense of desperation

among people with disability who crucially need support and care. Unethical providers

take advantage of this, and the lack of competition, where people with disability cannot

simply take their business elsewhere and are dependent on the one service provider.

Disability Advocacy NSW  | website: da.org.au  | Email: da@da.org.au  | Phone 1300 365 085        Page 3

We have written at length about issues surrounding the NDIS in RRR areas123. This

submission summarises and draws on previous research reports and submissions.

For further information we invite the committee to view our research reports at

da.org.au/resources.

Lastly, we write this submission acknowledging significant developments within the

disability sector. Namely, the Disability Royal Commission (DRC) and the NDIS

review. We have highlighted recommendations within these two reports that we see

as integral to address the issues raised in this submission and have made additional

recommendations.

1 Baylosis, C. (2023). ‘Thin Markets, Thin Hopes: The NDIS in Regional, Rural, and Remote NSW. Report 5 in Disability Advocacy’s Aussie Battler series. 2 Baylosis, C. (2022). NDIS Performance and Implementation: Burden of Evidence. Retrieved from NDIS Joint Standing Committee’s inquiry of General Issues (submission 5).

3 Baylosis, C. (2022). NDIS Implementation and Forecasting. NDIS Joint Standing Committee’s

inquiry into the Current Scheme Implementation and Forecasting for the NDIS (submission 81)

Disability Advocacy NSW  | website: da.org.au  | Email: da@da.org.au  | Phone 1300 365 085        Page 4

The experience of NDIS applicants and participants

Thin and absent markets

Thin markets plague RRR areas. In some locations, the scheme has not successfully

stimulated the growth of a disability services market. The limited amount, or absence

of services undermines the NDIS’s  principle of ‘choice and  control’. This was

demonstrated among DA’s surveyed participants indicating service accessibility

significantly decreased as the distance from metropolitan areas increased. In total,

73% of participants residing in rural/remote NSW reported service accessibility as

‘Poor/Very Poor’, compared to 42% living in regional areas, and 13% in metropolitan areas4.

I]f you do not have NDIS Plan you cannot access any disability services

anymore, while before you could access help straight away. Now it takes

forever  to  get  a  plan  before  you  can  maybe  access  any  help

Anonymous regional interview participant, 2021

Many community-based and mainstream services are inaccessible or no longer exist

in RRR areas. In some instances, as the above quote indicates, accessing disability

supports and services has become more challenging since the roll out of the NDIS.

There is a lack of services both in and outside of the NDIS. In this, there is also a lack

of support to help people navigate and locate services within what is experienced as

an overly complicated system. This can lead people with disability to disconnect

completely because the help is not available and or it is too challenging to access.

4 Survey research conducted by DA in 2021 N = 2021. See more

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These individuals are not at only at risk of missing out on crucial services and support,

but they are at risk of not being represented in the system’s data that is collected by

governments to assess thin markets.

We also see that services are often spread thin across large geographical areas in

RRR areas, which requires a need to travel to access services. When there are fewer

services in an area, it places increased demand on the few services that are available,

contributing to lengthy waitlists, or closed books.

[I] have to access services from other cities or states because local services

are over capacity. Waiting periods are so long that a plan would run out if you

tried to stay with local services.

Anonymous regional survey participant, 2021

Where there are thin markets, people will need to travel - sometimes hundreds of

kilometres and sometimes overnight where they must source accommodation - to

service providers that do have capacity. But for many, travelling is not viable due to

transport and accommodation costs, the time needed take leave from work, being

away from home (and from children and or pets that require care), unreliable and

inaccessible transport, and the support needed to travel. These issues can also impact

family members and friends who provide support and need to travel with their loved

one to appointments, creating a further financial burden for others.

If people with disability are unable to travel, they are reliant on service providers

travelling to them, which comes at a hefty price:

I have to find support people willing to travel to my home and paraprofessionals

will only visit when they can cluster other appointments in the area which means

once or sometimes twice a year. All other disability services or mainstream

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service, I have to arrange support and transport to, which ends up costing a lot

of money from my limited NDIS funds.

Anonymous regional survey participant 2021

There are a limited number of services providers who are willing to travel regularly to

some RRR areas. Moreover, service providers charge for travel, which can consume

a significant proportion of participants’ plans.

These challenges associated with travel are further impacted by the high cost of

disability. There are expenses associated with medications, treatment, equipment,

and aids, in addition to the costs of living in RRR areas involving transport, and daily

supports. As it is often described, people with disability who live in RRR areas are

‘double disadvantaged’5. They tend to have more expenses, yet they are more likely

to receive a lower income with nearly half (44%) of working aged people with disability

(15 – 64 years old) receiving government payments compared to those without a disability (12%)6. This can make affording necessities difficult, or even impossible.

I don’t think people living in cities quite get it, we pay extra for postage, fuel,

and so much more. How is my payment supposed to stretch further than

someone who lives closer to a city?

Anonymous rural survey participant, 2021

Accessing basic health care, such as seeing a general practitioner (GP), can be near

impossible. In turn, this can limit access to the NDIS as people are unable to gather

evidence needed for a NDIS application (discussed in more detail below). The costs

and challenges associated with obtaining a diagnosis, and living with a disability in a

RRR area can limit people’s ability to attend medical and specialists’ appointments.

5 Gething, L., (2010) Sources of Double Disadvantage for People with Disabilities Living in Remote and Rural Areas of New South Wales. Australia. Disability & Society, 12(4): p. 513-531 6 See Australian Institute of Health and Welfare. [accessed February 19, 2024]

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Consequently, many people with disability simply go without basic health care and

support.

Thin markets can also lead to inflated prices among service providers. A lack of

competition can embolden service providers to charge higher rates and ‘cherry pick’

their cliental (discussed in further detail below). While the NDIS price guide sets a

regulatory system to set price limits7, service providers will often nominate to charge

the higher fees for NDIS participants, while refusing to service non-NDIS participants.

NDIS providers tend to charge the maximum allowable. Some also charge

transport and time to and from and as this has not been funded in my plan it

has resulted in a limited choice of providers for me.

Outer regional survey participant, 2022

For many PWD living in RRR areas, the NDIS can seem like the only avenue to access

necessary and reasonable supports and services. As Professor Bruce Bonyhady

described, the scheme can seem  like, ‘an oasis  in the dessert’ that  is deeply

inequitable for those unable to access the scheme. The double disadvantage that

people with disability who live in RRR magnifies such inequity. They face unique

challenges with thin and absent markets that not only limits service availability, but it

also creates challenges with accessing the scheme.

The paucity of mainstream and ‘tier 2’ services8 leaves people with disability without

crucially needed supports and services, while limiting their capacity to access the

scheme. The current NDIS model – without effective stewardship – disadvantages

7 See NDIS Pricing Arrangements and Price Limits 2022-2023. 8 In 2020, ‘tier 2’ became known as Information, Linkages and Capacity Building (ILC), comprising two components that include a grants program administered by the Department of Social Services and Local Area Coordinators (LACs) who would be responsible for linking people to support and information in the community.

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the most disadvantaged, where people with disability living in RRR risk falling through

the gaps.

The NDIS review’s recommendation to change the scheme’s model structure to

incorporate ‘foundational supports’ is promising. Its purpose to ensure all people with

disability have access to support and a navigator to help them access basic care and

support is a step forward. However, the issues in RRR areas revolving around thin

markets must be addressed if this new model is going to work. The new proposed

model is likely to encounter similar challenges as the NDIS’s original tier 2 services

and local area coordinators (LACs) faced in regional, rural, and remote (RRR) areas.

We acknowledge and agree with recommendation 13  in the NDIS Review  to

‘strengthen market monitoring and responses to challenges in coordinating the NDIS

market’ which requires legislative changes. These are outlined and discussed below,

along with other considerations regarding foundational supports in thin markets.

Recommendations:

1.) Department of Social Services (DSS) takes on an active role in monitoring markets

through data gathered from the transition to electronic payments and service

access issues reported by navigators. In addition to this, we recommend that other

data  is gathered from  specific RRR areas  to  gain more  of an  accurate

representation  of service demand. The proposal  to monitor the market via

electronic payments and service access issues has the potential to overlook

cohorts who have not engaged with disability services. Arguably, these may be the

most vulnerable and disadvantaged.

Other more diverse data is needed. We recommend randomised collection that is

location based is needed to get a more accurate representation of people with

disability who are both engaged and disengaged with services. Additionally, data

in relation to carers (e.g., carers’ payments, carer related services data) may be

useful. This is a cohort that often provide informal support due a lack of other

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options. Therefore, gathering carers’ data may also reveal gaps in the market in

RRR areas. Gathering such data will strengthen the collection of data to better

identify thin markets and allow governments to respond effectively.

2.) Provider panels of allied health professionals (AHPs) are trialled in small and

regional areas. This will help to assess the effectiveness of AHPs pooling both

coordination and resources to service RRR areas. However, this trial must ensure

that provider panel patient sizes are properly trialled so that workloads are

manageable and remain at a level that does not impact on quality. We recommend

that these trials factor in the geographical spread of each panel service to

determine and allocate the necessary resources involved with travel.

3.) Provider of last resort arrangements are evidence-driven and underpinned by

robust market monitoring. This needs to ensure that people with disability in RRR

areas where there are thin markets are not disadvantaged and there is consistency

in the level of care across different locations. Local hospital data may be another

source of information to assess the effectiveness of provider of last resort services.

Currently, many people with disability in RRR areas rely on admissions to hospital

to receive care and treatment because of a lack of availability in their areas.

Therefore, using this data may provide more of an accurate representation of the

effectiveness of providers of last resort.

4.) The move toward foundational supports in areas of thin markets incorporates

findings from DSS’s market-monitoring. This will ensure that adequate resources

are disbursed to fund foundational supports in areas where there are thin or absent

markets. Additional funding in areas of thin markets should be considered to

ensure that foundational supports are adequately resourced to service RRR areas.

Barriers to information

Accessing information about the NDIS is vital for people with disability to know how to

use and access the scheme. Information provided by the NDIA generally assumes

literacy skills, computer literacy, as well as access to stable internet connection and

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electronic communication devices9. There is also an assumption that if people lack

these resources, they have access to informal and formal supports (e.g., family,

friends, advocates). Some RRR communities lack these resources, placing them at a

disadvantage because they do not have the means to access information needed to

engage with the NDIS.

In some RRR communities, there is low literacy, and digital literacy that limits people’s

ability to navigate the NDIS. Oftentimes, these communities rely on word-of-mouth and

their peers, friends, and or family as a form of informal support to help them navigate the NDIS10. Access to the internet can also be limited as there may be limited and

unreliable digital infrastructure. At times, households rely on a single mobile phone,

and costly data on that one phone as the only means to access information on the internet11. This can not only make accessing information difficult, but it can also create

challenges with lodging and uploading documents to support NDIS applications.

Additionally, trust is also a barrier to information. Some RRR communities – such as

remote Aboriginal communities – are distrusting of government agencies, due to

historical mistreatment, which limits their willingness to seek out information at the

outset12. Without information and culturally appropriate engagement, challenging

these longstanding perceptions is difficult. Providing information needs to extend

beyond one-way communication where information is disseminated without the ability

for people to engage in conversation. Two-way communication and engagement not

only provide an opportunity for discussion, it enables relationships and trust to form, which for some communities, is an important initial step in receiving information13.

9 Stewart, V., Visser, K., & Slattery, M. (2020). Supporting choice, recovery, and participation: Clear and easy to understand information is the key to ndis access for those with psychosocial disability. Journal of Social Inclusion, 11(2), 33-46. 10 ibid 11 Park, S. (2017). Digital inequalities in rural Australia: A double jeopardy of remoteness and social exclusion. Journal of Rural Studies, 54, 399-407. 12 Dew, A., Vaughan, P., McEntyre, E., & Dowse, L. (2019). ‘Our ways to planning’: Preparing organisations to plan with Aboriginal and Torres Strait Islander people with disability. Australian Aboriginal Studies (Canberra), (2), 3-18. 13 Gilroy, J., Veli-Gold, S., Wright, W., Dew, A., Jensen, H., Bulkeley, K., & Lincoln, M. (2023). Disability workforce and the NDIS planning process in regional, rural and remote regions of Australia: Scoping review. Australian Journal of Rural Health, 31(5), 839-854.

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Recommendations

5.) The NDIA conducts community outreach to hard-to-reach communities to build

capacity within communities to navigate the NDIS. In this, the proposed ‘navigator’

role, which will assist people to access services both in and outside of the NDIS,

can play a role in conducting regular outreach to better engage communities and

individuals.

6.) The NDIA employs culturally identified navigators, who have capacity to build trust

and relationships with hard-to-reach RRR communities. Ideally, these will be

individuals who have established working relationships within the communities that

they will be working with.

7.) Culturally safe guidelines and practices are developed through a process of co

design. This must occur with people with disability who identify as Aboriginal and

or Torres Strait Islander, and people belonging to a culturally and linguistically

diverse background(s).

Burden of evidence

We have written at length about the additional challenges faced by people living in RRR when gathering evidence14. It impacts many stages, including the application

phase, when there is a change of circumstance, and during internal and external

reviews, where substantial documentation (evidence) from the applicant or NDIS

participant is often required.

Due to the absence of allied health and medical professionals, people are not able to

demonstrate that they meet the eligibility requirements or require changes to their

NDIS plan because they cannot obtain the level evidence required by the NDIA.

Additionally, obtaining acceptable evidence is a frequent problem reported by

14 For more detail information see NDIS Performance and Implementation: Burden of Evidence (number 5),DA’s submission to NDIS Joint Standing Committee’s inquiry into general issues 2022.

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applicants and NDIS participants. This is largely due to a lack of clarity around what

the NDIA deems as credible evidence.

It is like ‘the secret service’… you have to know, and write the correct codes to

gain access to help and only [government] staff know this ‘special language’

and they don’t share it with anyone else.

Anonymous regional interview participant 2021

Doctors and treating specialists are not provided with adequate information, training,

or support from the NDIA to write reports for access requests. Without experience or

guidance to complete reports, specialists and doctors often find that their assessments

are deemed unsatisfactory, and they are required to revise or reword their reports. In

this, there are inconsistencies in relation to what the NDIA accepts. For instance, in

some cases the NDIA will accept a written explanation from a GP about a person’s

treatment history. However, in many other cases the NDIA may deny access with the

same level of information on the basis that it needs to be confirmed by one or more

specialists, and they need a functional capacity assessment written by an occupational

therapist (OT).

Increasingly, it seems that the NDIA’s requests for additional reports are becoming

unofficial requirements. But obtaining these reports can cost considerable amounts of

money. This places a financial burden on applicants and participants and strain on

time-poor doctors and specialists. Additionally, we are seeing a concerning trend

among GPs and specialists telling clients they do not write reports for the NDIS. For

people with disability living in RRR areas, this magnifies issues with thin markets:

finding affordable specialists and doctors who are willing, and available to write reports

within a manageable distance to travel to and from, can be like finding a ‘needle in the

haystack’. Yet, there is little practical and financial assistance provided by the NDIA to

assist people in RRR areas to obtain evidence.

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Case study 1: Grant*

Grant is a Disability Support Pension (DSP) recipient who lives in a RRR area. He was

unable to access the NDIS because of the costs associated with the need to travel to

and from medical appointments that the NDIA requested he attend. He explained that

being on the DSP meant that he, ‘didn’t have the money to drive down and back to a

[regional centre] every couple of weeks’. This was compounded by his conditions

which prevent him from driving and having a child with high-care needs. Additionally,

travelling would require his partner and child to go with him. He noted that while there

is financial assistance for fuel – up to 70% of the cost – it does not take into account

parking, or food that he would need to purchase for himself, his partner, and child.

These costs created a substantial barrier for Grant that it meant he was unable to

attend the appointments with the specialist. Not only did this mean that he went without

treatment for his condition, but he was unable to obtain evidence to access the NDIS.

Recommendations

8.) Foundational supports - as proposed in the NDIS review - include daily supports

that assist with travel to medical and health appointments where there are thin

markets. This can help as an interim measure for people unable to meet evidentiary

requirements due to issues associated with thin markets and travel. Foundational

supports can provide an important measure, filling in gaps in support services.

9.) Foundational supports include a base level of funding for a variety of therapies

(OT, physiotherapists, speech pathologists, psychologists). This base funding can

be used to obtain assessments from treating specialists who are most appropriate

to assess individuals’ specific disabilities.

  • Name anonymised. Disability Advocacy NSW | website: da.org.au | Email: da@da.org.au | Phone 1300 365 085 Page 14

The availability of health and disability workers

With thin markets, there is shortage of skilled disability and health workers in RRR

areas. Attracting professionals to these areas has been a longstanding issue. Many

workers prefer to stay closer to cities where there is more support and potential for

career progression. Thus, an inherent problem within thin markets is a short supply of

skilled professionals who deliver good quality health and disability care.

As a result, positions can remain vacant for considerable amounts of time. Even when

there are incentives that may attract skilled disability and health workers to RRR areas, it is also difficult to retain them for long periods15. Consequently, the use of fly-in and

fly-out (FIFO) doctors and allied health professionals in some RRR areas is a common

practice16. Additionally, service providers will cluster appointments in one area when

travelling  is required, which  limits the number of times they  will  visit locations

sometimes to once or twice a year17. These are short-term fixes that limit continuity of

service, and hampers rapport building between clients and health professionals.

A lack of a skilled workforce in RRR areas can reduce requirements and qualifications

that are needed for a position and or service provision. It is common, for instance, for

support workers in RRR areas to have no prior experience or qualifications. Here, the

NDIA has attempted to limit barriers for entry for service providers (e.g., unregistered

providers) to increase diversity, choice, and control. In some cases, this has enabled

greater flexibility and choice for NDIS participants as they can select a familiar and

trusted individual to provide support and assist with daily living. But this can come at

a cost  in quality and oversight (discussed  in further detail below), where both

participants and the scheme are exploited.

15 Lincoln, M., Gallego, G., Dew, A., Bulkeley, K., Veitch, C., Bundy, A., … & Griffiths, S. (2014). Recruitment and retention of allied health professionals in the disability sector in rural and remote New South Wales, Australia. Journal of intellectual and developmental disability, 39(1), 86-97. 16Fitts, M.S., Russel, D., Matthew, S., Liddle, Z., Mulhoiland, E., Comerford, C., Wakerman, J. (2020). Remote health service vulnerabilities and responses to the COVID-19 pandemic. Australian Journal of Rural Health, 28(6), 613 – 617. 17 ibid

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This is also problematic when there is mismatch in the level of care needed for a

person with disability and the level of care and or health needs. Adding to this, is the

diversity of disabilities that require specialist knowledge. For example, a person may

have a diagnosis that they share with only one or two other people in the world. In

areas where there are thin markets, finding a specialist with the expertise and

knowledge to treat such condition is difficult. Again, it may mean that people need to

travel, accept inappropriate levels of care, rely on FIFO healthcare workers, relocate,

or forgo support and services *altogether.

Case study 2: Bill and Charlie*

Bill is the father of Charlie, a 20-year-old with a rare disability where there is only one

other known case in the world. They live in a remote town in NSW’s Far West. Charlie

has high needs, requiring 24-hour one-to-one care. He is non-verbal, unable to sit up,

requires peg-feeding, and uses a wheelchair. Bill advised that Charlie has not had his

teeth cleaned for several years because he requires a general anaesthetic to undergo

the procedure. Bill advised that ‘it was just too risky if something was to go wrong’ in

their remote town. It would require hours of travel to the next major hospital where

there is appropriately trained and skilled staff. Bill holds concerns that Charlie’s

condition is so complex that he requires specialist knowledge and care. He is unsure

that that local services would know how to respond if there was an unexpected

complication. As it is, Bill and Charlie often need to travel 5.5 hours (driving) away to

the next major city to access specialist health care. Bill is concerned that if travel was

required to the next major city, it could place Charlie at significant risk of not being able

to receive the appropriate level medical care on time.

*Names anonymised.

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Bill’s experience with health services highlights the difficulties associated with

concerns about the level of skilled disability and health care workers in RRR areas. In

this case, the are risks associated with accessing specialist care in an emergency

where an immediate response is critical to Charlie’s safety.

Recommendations

10.) The Australian Government and states and territories invest in peer support and

developing workforces in RRR areas. The NDIS review recommends investing in peer

support, increasing migration pathways for oversees workers, and to plan for future

workforce needs as solutions to address the worker shortage in RRR areas. We

suggest that the Australian Government, and states and territories invest in upskilling

the labour market in RRR areas. E.g., TAFE courses are provided to RRR areas

communities to learn basic levels of disability care. This can include subsidised TAFE

programs and/or scholarships to assist with fees and or costs of living and studying in

a RRR area. To increase accessibility for people in RRR areas, online programs

should be developed to allow for students who cannot travel or relocate to study.

11.) A minimum qualification, along with registration, as recommended by the DRC,

is required for support workers to better ensure a standard and quality. We note that

the NDIS review also recommends that all service providers are registered within a

‘risk proportionate model’. While this may reduce some of the lack of oversight of

unregistered  providers, we recommend  that  the  ‘lower  risk’  registration and

enrolments have a robust assessment criterion for individuals and businesses seeking

registration that can identify previous issues of misconduct. If concerns arise, there

are measures that will prevent and or limit such businesses from operating again

under a new business alias, particularly in cases involving serious misconduct.

12.) Provider panels develop clear guidelines and standards that ensure continuity

and quality of care. The NDIS review’s recommendation to use panel arrangements

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for allied health professionals in small and medium sized rural towns may work toward

lowering costs of service through sharing the costs of travel and resources among

local providers. However, providers of the same panel must work to ensure that there

is continuity among panel members to ensure standard of quality across panel

members. This can include key performance indicators that can measure time

allocated to discussing client plans and treatments among the team, alongside

satisfaction ratings and or reports of clients.

Unethical service providers

In thin markets, a lack of choice means a lack of control. People are not empowered

to seek out an alternative service provider if they are unsatisfied with a service.

Conversely, they can become dependent on the one service provider because they cannot go elsewhere18. This contributes to a reluctance to make complaints or speak

out about exploitation, abuse, neglect and or violence perpetrated by unethical service

providers. In small communities where there are close-knit ties and a lack of

anonymity, some people fear that they will be identified if they speak out and lose

access to crucially needed supports and services.

I find if you put in a genuine complaint in a small town, it always gets back to

you. That is when you are treated like dirt, so you never put in a compliant

Anonymous rural survey participant, 2021

Adding to these issues are inconsistencies with registration, where unregistered

providers do not undergo the same time-consuming process as providers that are

registered with the NDIS Quality and Safeguards Commission go through. In RRR

18 Baylosis, C. (2023). Thin Markets Thin Hopes: The NDIS in Regional, Rural and Remote NSW. Disability Advocacy NSW.

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areas, unregistered providers have some benefits as it enables more service providers

to operate without the red tape that registered providers have. This can encourage

small local business to enter the market and provide participants with more choice and

control. However, there are risks with a lack of oversight, which can enable, and even

encourage, unethical practices.

These conditions can also erode service quality as there is little accountability. Despite

several mechanisms in place to address misconduct and fraudulent activity, people

with disability in RRR areas continue to experience exploitation. While the NDIS

Quality and Safeguards Commission is responsible for responding to complaints,

investigations can be hampered if people with disability are fearful to speak up. As the

NDIS review pointed out, the current protective mechanisms rely on participants and

or their supporters to raise issues. This means that without formal complaints, many

unethical providers and practices can remain undetected and unaddressed by the

NDIA Quality and Safeguards Commission.

Recommendations

13.) The NDIS Quality and Safeguards Commission take an active role and engage

communities face-to-face who are at greater risk of abuse, neglect, exploitation,

and violence (e.g., site visits to providers and workers), as recommended by the

DRC. We raise this specific recommendation as we see this as relevant and

necessary for people with disability living in RRR areas where there are thin

markets. Specially, we recommend an on the ground presence, where the new

proposed National Disability Supports and Safeguards Commission engages with

RRR communities to build capacity to identify and report misconduct. This new

body will take on more of an active role in monitoring service providers than the

previous Commission did. This can involve randomised visits to providers, using a

similar model as the official community visitors program (administered by the NSW

Aging and Disability Commission).

14.) Ban providers from charging higher prices to NDIS participants for services. We

also acknowledge  that the Australian government  is attempting  to address

Disability Advocacy NSW  | website: da.org.au  | Email: da@da.org.au  | Phone 1300 365 085       Page 19

fraudulent activity among service providers and has invested in a taskforce to

investigate suspicious activity among service providers. They have also now

placed new bans on providers charger higher prices to NDIS participants for goods,

but at this stage, the ban is not applicable to services.

Conclusion

This inquiry regarding the experience of NDIS participants living in RRR areas is sorely

needed. People living in RRR areas are unfairly disadvantaged and have not fully

realised the benefits of the scheme. As the submission has highlighted, the nature of

thin markets in RRR areas has comprised the NDIA’s vision of choice and control.

Instead, people with disability are facing precarious situations where there is a lack of

services, which contributes to a risk of exploitation and abuse. We trust that this review

will address and attempt to correct these issues, and other concerns raised by the

disability sector and individuals who contributed to this inquiry.

Disability Advocacy NSW  | website: da.org.au  | Email: da@da.org.au  | Phone 1300 365 085       Page 20