About Disability Advocacy NSW (DA)

DA has over 35 years of experience providing individual advocacy to people with disability (PWD) of any age and disability. The organisation services over two thirds of NSW, making it the largest individual advocacy disability organisation within Australia.

While DA has a presence in metropolitan areas, it has a strong local presence in 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, Central Coast, Upper Hunter, Port Macquarie, Tamworth and Taree – DA has firsthand insights and observations of the lived experiences of PWD and their families living in these areas.

Our systemic advocacy draws on coalface information from clients, disability advocates, and the disability sector more broadly to identify and address emerging policy issues. We embrace the saying, ‘nothing about us, without us’, ensuring that the voices of PWD are central to informing our systemic advocacy. In this submission, we focus on how the NDIS’ implementation in RRR areas has impacted on people with disability living in RRR areas, with regard to tier 2, and community-based support. In addition to this submission, we invite committee members to conduct site visits to our RRR offices alongside our policy officer (contact details below) to hear more about the experiences of PWD living in RRR areas.

Contact Dr. Cherry Baylosis Policy Officer at DA

Introduction

We welcome this opportunity to contribute to the NDIS’ Joint Standing Committee’s inquiry into the NDIS’ implementation and forecasting.

This submission focuses on discussing the NDIS’ implementation in RRR areas, specifically addressing the terms of reference in section A surrounding:

The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS funding and;
- the availability of support outside the NDIS for people with disability (e.g., community- based or ‘Tier 2’ supports), and
- the future of the Information, Linkages and Capacity Building (ILC) grants program.

Specifically, we highlight significant concerns as reported by PWD and their families within scoping research conducted by DA1. We also present trends within our advocacy work to discuss a concerning increase in the demand for advocacy support relating to NDIS issues. Within this, we observe that PWD living in RRR areas are increasingly seeking advocacy support for matters involving NDIS access and/or reviews of insufficient funding in their NDIS plans. These matters are exacerbated by an inadequate availability of tier 2 services, leaving PWD with little viable avenues to receive support and services outside of the NDIS. This is particularly problematic in the areas of support programs, psychosocial disability, aged care, and housing, which are discussed in this submission.

We forecast that the demand for advocacy support will continue to increase unless measures are developed to address service systems gaps. Such an increase in advocacy support signifies issues with the NDIS’ performance. Thus, without addressing service systems gaps in and around the NDIS, we foresee that many PWD will be at risk of falling through service cracks where they receive inadequate care.

As this submission will discuss, PWD who living in RRR areas are what Gething describes as ‘double disadvantaged’ in comparison to those who live in or near metropolitan areas2. Not only do they experience marginalisation relating to their disability, but they must also contend with the disadvantage that is associated with living in RRR communities where there is a short supply of services.

In our view, the NDIS’ implementation along with existing ILC programs have not adequately helped to bridge the gap between service systems. This is, in part, due to the nature of thin and absent markets that occur between and within service systems. Small populations spread across large distances does not provide an adequate market for service providers and service users. Moreover, the

1 This is research is based on DA’s scoping project that used surveys (N = 317), and interviews (N = 28) to examine how the experiences of people with disability and/or their families differ based on where their geographical location (e.g., metropolitan, regional, rural).

2 Gething, L., Sources of Double Disadvantage for People with Disabilities Living in Remote and Rural Areas of New South Wales, Australia. Disability & Society, 2010. 12(4): p. 513-531

dearth of service providers, can further contribute to service inaccessibility for PWD who are deemed ineligible for the scheme.

We therefore recommend that more measures are taken by the NDIA and federal government to engage in market stewardship. Our five core recommendations are set out below, with our rationale and evidence for these in the remainder of this submission.

Recommendation 1: Department of Social Services (DSS) invests more into ILCs programs, and/or restructures how ILC funding is distributed to RRR areas.

The purpose of funding, in this regard, must aim to identify and address service gaps to ensure PWD in RRR areas do not fall through the cracks. A part of this will ensure that LAC’s caseloads are resourced sufficiently to attend to ILC work. Key performance indicators should be developed for DSS, NDIA and ILC in relation to ILC programs in RRR areas to be able to monitor the effectiveness of these programs.

Recommendation 2: States and territories and federal governments must work together to identify thin markets and ensure tier 2 services are readily accessible in RRR areas

Following on from recommendation 1, we recommend a stronger collaboration between states and territories and federal governments to review and address the accessibility of tier 2 supports in RRR areas. This particularly important in RRR areas where there are market deficiencies in NDIS service providers. States and territories and the federal governments must work together to identify thin markets and develop measures to ensure that such areas are adequately funded to supply tier 2 services. This is particularly important for PWD who do not meet the access requirements for the NDIS and who rely on community or support programs such as safe and supported home packages (SASH), or ComPacks.

Recommendation 3: The NDIA reviews evidence requirement for people with psychosocial disabilities

In relation to recommendation 2, solely bolstering community services with additional funding is unlikely to address inequity due to inadequacies and inconsistencies in how disability is understood – especially in relation to psychosocial disabilities. Therefore, we recommend that the NDIA reviews evidence requirements. Such a review should involve consultations with PWD, and those supporting them. This will help to ensure that measures that are developed are informed by lived experience, improving equity and consistency for PWD. In turn, this may reduce the need for internal/external reviews and unnecessary expenditure.

Recommendation 4: Federal government invests in developing local labour in RRR communities and incentivise working within these areas.

More measures are needed to increase choice and control for NDIS participants. Specifically, we recommend market stewardship that aims at developing labour forces within RRR areas. Providing funding to individual plans alone is not enough to attract service providers. We recommend that the federal government invest in a national program that firstly aims to skill up communities so that labour

can be sourced from within communities. And second, aims to incentivise specialists/professionals to live and work in RRR areas. This may aid in stimulating markets, thus providing more choice and control.

Recommendation 5: The NDIA reviews pricing guide for provider travel

The NDIA reviews the pricing guide for provider travel to ensure that it is not prohibitive of service provision in RRR areas. Additionally, the NDIA should provide a clear set of guidelines for service providers to adequately pay their staff for travel costs. This guide must take into consideration travel into areas classified as MMM4-5 areas where travel time exceeds one hour. In addition, the NDIA must develop guidelines for planners to ensure that NDIS participants have adequate funds in their plans to cover travel costs for service providers. This will ensure that NDIS participants are appropriately funded to receive consistent reasonable and necessary supports and services.

Another implication of thin markets is travel. Here, participants are often required to travel lengthy distances as reflected in case study 1, where redacted travels 400kms (a round trip) for appointments. Additionally, thin markets often require service providers to travel into RRR areas where there are no, or few, other providers. However, the cost of travel and/or inadequate funding is often a disincentive for both service providers and NDIS participants to make trips into RRR areas.

Accordingly, advocates report that NDIS participants frequently receive insufficient funding in their plans to cover travel costs for service providers. Consequently, they often forego the amount of care that they require. Moreover, travel funding is limited to one hour each way4, which means that travel time that exceeds this one-hour limit can incur an out-of-pocket expense for service providers. This, coupled with a few hours of work can act as a disincentive for service providers. This is reflected in case study 2 (below), where Taylor talks about how he was unable to source appropriately qualified support workers who were willing to travel to his rural community because the pay was inadequate.

Case study 2: Taylor*

Taylor is a transman in his late 20s living with a disability in a metropolitan area. He is a wheelchair user, and needed to move 250kms from rural NSW to a regional centre to access services and support.

For Taylor accessing regular support was problematic in rural NSW. He described, ‘there are no access to services, and there are no support workers’ who are appropriately qualified and are willing to travel far distances because the pay is too low.

Taylor described a longing to return to his home, ‘I dream of going back to country, but I can’t because there is no access to health care there’. He explained that ‘the displacement into cities, because of health problems’ was ‘one of the saddest things for [him]’.

In describing his experience with the NDIS in RRR areas, he lamented, ‘they say the NDIS is accessible in rural areas. But it truly isn’t in like, the actual physical sense of it. It’s not, you can’t actually get workers.’

DA interview from 2021 scoping research. *Name de-identified at the participant’s request.

Additionally, the capacity to travel lengthy distances is often not an option for PWD due to health concerns, mobility issues, behavioural challenges, cost and/or the need for support to attend appointments. In RRR areas, this also impacted by infrequent and inaccessible public transport as well as infrastructure with inaccessible environments, which can make it difficult to move in public spaces.

Sadly, some PWD living in rural and remote communities are forced to make the difficult decision to relocate to regional/metropolitan centres to access supports and services. As Taylor in case study 2 (left) explains, accessing support and services was extremely challenging because there was a short supply of qualified workers who were willing to travel frequently to his rural community.

Both Taylor and redacted experiences mirrors data discussed in previous submissions5, which indicates that accessibility of disability services decreases the further you travel from city centres. Alarmingly, this stands in contrast to the ABS data that indicates that the rate of disability increases

4 For areas classified as MM4-5 5 NDIS Joint Standing Committee’s Inquiry into NDIS’ Implementation and Performance (submission number 79).

Disability Advocacy Services

[ABN: 9398 4383 421]

I I j

services for people living in RRR areas

The implementation of the NDIS in RRR areas saw many pre-existing disability support arrangements discontinued, defunded and or absorbed into larger service providers. As services folded, or became NDIS service providers, there was a decline in a diversity of tier 2 services. This has given rise to market deficiencies in many RRR areas where supports and services are dispersed across vast geographical distances. With few services, there are often lengthy waitlists, the need to travel, and inaccessible costs ?.

Thin markets result in a lack of meaningful choice and control. There are little services to choose from, leading to a loss of control in being able to select appropriately skilled, or suited service providers. As , in case study 1 (right) highlights, there is often an acceptance of subpar services in her community, with a ‘that will do’ mentality because there are very few available options to choose from in RRR areas.

Moreover, talks about her difficulties with accessing disability services without a NDIS plan because many services have become registered providers. Advocates report that an unintended outcome of this shift is that providers have adopted fees as stipulated in the pricing guide. In many cases, this has increased fees for services in RRR areas, which in turn, can create financial barriers for non-NDIS participants who may not have funds available

hin markets

Case study 1

Heather is a single mum who lives in Bathurst with her young adult daughter, whom she cares for. Both are NDIS participants. She refers to the NDIS as the ‘National Disgrace Incompetent System’.

has a psychiatric condition and was an inpatient at various psychiatric hospitals after experiencing significant stress while attempting to manage insufficient NDIS supports for her daughter.

Due to a lack of supports in her area, and her daughter need to travel to Sydney — approximately 200kms one way - for medical appointments.

In experience, the Bathurst community often adopts a ‘that will do’ attitude in relation to supports. Seemingly this is because there just aren’t a lot of services or options available.

says she ‘would take the old system over NDIS any day’. She explains it was much easier to access support. People could ring and say, ‘I need help’, then they could do, ‘easy paperwork and then you got help. Now, no one can assist people until they get access to an NDIS plan and getting a plan is near impossible.’

In her own (written) words she describes, ‘if you do not have a NDIS Plan you now 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).’

to pay for support. Furthermore, advocates report that this can lead to service providers refusing to take on clients who do not have NDIS plans.

ni Cnn; CaAmmittoo’ cnnrg i MIS’ Imn 3 NDIS Joint Standing Committee’s Inquiry into NDIS’ Imp 79). elimentation and Performance (submission number

with rurality6. In short, this demonstrates that despite the implementation of the NDIS, accessing disability services continues to remain an issue for PWD living RRR areas. More measures are needed to address thin and markets.

This submission so far has discussed issues surrounding thin markets and the NDIS in RRR areas. The next section turns to how the NDIS interacts with other service system focusing on state funded support programs, psychosocial disability, aged care, and housing. These are areas of concern DA advocates have identified as having prominent service system gaps which have, in part, arisen alongside the implementation of the NDIS. It highlights how thin markets and service systems gaps are contributing to potential system failures where PWD are at risk of further disadvantage from falling through cracks in the system.

Community programs and tier 2 support

Increased reliance on support programs

For people who are unable to access the NDIS, they often rely on safe and supported home packages (SASH), or ComPacks for people who require support after being discharged from hospital. These programs are intended as short-term programs, but there is an increasing pressure on providers of these programs to service large volumes of PWD. Due to high demand, support offered tends to be increasingly restrictive, often leaving PWD to self-fund supports. Many PWD are left with minimal support, and once funding has been utilised (or a NDIS access decision is made), they are left with no support at all.

Consequently, PWD are often forced to be re-hospitalised due to a lack of community supports. This is reflected in our data, with 19% of clients utilising supported programs in the last 6 months being re- hospitalised to regain access to supports, and 64% requiring extensions (psychosocial 76%, physical 24%) for SASH in six-week block periods. Though these programs are intended for short-term care, they often are extended beyond the six weeks to ensure PWD receive continued care. Adding to their demand, are lengthy disputes in the Administrative Appeals Tribunal (AAT), which are rising in volume and time needed to resolve matters (see p. 12). While this occurs, SASH and ComPacks programs are often left to provide care for participants who are unable to access the scheme as there are often no other options for support.

A concerning issue here is the precarious nature of funding for SASH and ComPacks programs. At the time of writing this submission, the funding for these programs have not yet been secured beyond June 2022. Consequently, advocates report SASH programs are currently advising current clients that their support may be discontinued. Due to service gaps, these programs often, as one advocate described, ‘are left to pick up the slack’ where the NDIS cannot provide adequate support for people. If funding is discontinued, we foresee that many people will be left without necessary and reasonable supports. This may place PWD who are unable to access the NDIS in vulnerable situations with no support. It may also create difficulties for PWD who often rely on these programs for support to gather

6 Australian Bureau of Statistics (2015). Disability, ageing and carers, Australia: summary of findings

evidence needed for NDIS access requests. For instance, PWD may use SASH to attend medical appointments that are needed for medical reports for NDIS access.

Psychosocial disability

Service system gaps is a prominent issue for people with psychosocial disability (PWPD) who live in RRR areas. Here, participants, like Jacqui (case study 3, right), advised that they rely on the healthcare system (Medicare) and bulk- billing psychiatrists, as they are unable to self- fund treatment. However, services that offer bulk-billing are usually at full capacity with lengthy waitlists, particularly in RRR areas. Additionally, there seems to be a decreasing availability of psychiatrists and doctors who are willing to bulk-bill. This is reflected in Jacqui’s case where they reported that they experienced significant stress after their bulk-billing psychiatrist advised that he would no longer offer bulk-billing. This placed significant financial and psychological stress on Jacqui, who explained that self-funding appointments, as a DSP recipient, was difficult. Moreover, as will be discussed in the trends and data section (p. 12) PWPD, often rely on general practitioners (GPs) to supply medical reports for NDIS access requests. This presents numerous challenges due to a scarcity of GPs who firstly bulk-bill and secondly, understand the requirements to provide such documentation.

Aged care

There is an increasing reliance on aged care services due to lack of NDIS service providers in RRR areas. Advocates report that in some instances, aged care providers recommend participants apply for aged care support. A concern here is that Section 29 of the NDIS Act operates so that if they are over 65 years old when they start receiving aged home care assistance on a permanent basis, the participant will cease to be a NDIS participant. The operation of this provision is unlikely to be clear to many participants and may be misunderstood by providers as well. Consequently, it leaves people who would be better served under the NDIS with minimal support. As one advocate explained, they had one client who was transitioned out of the scheme because they

Case study 3: Jacqui

Jacqui is a NDIS participant who also receives the disability support pension (DSP). She has multiple diagnoses, including PTSD, level 2 autism, and anxiety. Jacqui reported that ‘there was some confusion’ in regard to how her NDIS funding is determined based on primary conditions. For Jacqui, her conditions ‘go hand in hand’ - if one deteriorates, then the others are likely to decline. So, it can be stressful, trying to navigate access treatment through several service systems.

Jacqui relies on the health care system (Medicare) to access treatment for anxiety, where she can receive treatment through bulk-billing psychiatrists. However, she experienced a distressing event when a psychiatrist advised that they would no longer offer bulk-billing. This placed Jacqui’s health at risk of her deteriorating. She explained, that if her anxiety was not treated, it was likely it would impact on her other conditions, where she would need more support through the NDIS.

In her words, Jacqui described it as ‘really scary’ having to fund an appointment that costs $550 upfront. While she could claim approximately $200 through the Medicare rebate, Jacqui describes it a ‘large chunk of money’ for someone on the DSP.

Fortunately, she was linked in with psychiatrist who was willing to bulk-bill Jacqui’s treatment. However, this psychiatrist advised it was not something that they usually do. This means that others who face a similar situation to Jacqui may not have that option.

DA interview from 2021 scoping research. *Name de-identified at the participant’s request.

had started receiving aged care support. However, because there were staff shortages within aged care in their RRR area, they were left with no support.

Accommodation and supported Independent Living (SIL)

Access to stable and appropriate accommodation is increasingly threatened by discontinued or insufficient funding in participants’ NDIS plans. Adding to this, are lengthy delays with the NDIA processing paperwork for participants’ plan. This is compounded by a shortage of SIL providers, which is particularly problematic in RRR areas, where there are limited affordable and appropriate housing options for PWD as well as short-term accommodation options. In DA’s advocacy trends, SIL matters take on average 4 times longer (16 months) than DA’s standard turnover rate (4 months), illustrating unnecessary delays for PWD to access continued stable accommodation.

Numerous advocates report that service providers are often having to go beyond available funding to ensure PWD have accommodation because there are no other options available in their RRR communities. One advocate advised that hospitals are acting as a ‘stop gap measure’, essentially providing accommodation for PWD – who are fit to be discharged - because they have nowhere else to go and are at risk of homelessness. While this places financial responsibility on states and territories in the short-term, it can also have long-term tolls on both federal and state and territory governments. Delayed hospital stays can have adverse effects on people’s mental and physical wellbeing, who may then require additional supports and services.

Additionally, advocates report that there are instances where SIL providers accommodate clients for free while matters surrounding their clients’ SIL funding are at the AAT. Within this, one advocate advised that one SIL provider had supplied 18 months of support for a client who had no funding, hopeful that they would be reimbursed once the matter was resolved in the client’s favour.

There are insufficient safety nets surrounding the NDIS, which can place PWD who are ineligible for NDIS funding at risk of receiving inadequate care. In turn, this leaves service providers with difficult decisions where they must negotiate surrounding funding restrictions and their duty of care to clients.

Navigating service systems

There are challenges with navigating the myriad of service systems in and around the NDIS. As redacted (case study 1, p.6) advised, prior to the NDIS, she did not need support from advocacy services. For redacted the process was simpler to access support (case study 1, p. 6), which enabled her to autonomously manage accessing support. As she put it, ‘I had never used DA until NDIS started. I have done everything else. Totally. For myself.’

Reflecting a common concern among the survey and interview samples, redacted described the NDIS as ‘complicated’, and questioned ‘how anyone with a disability could follow it.’ Here, participants

frequently described navigating service systems as confusing and complex, which made it difficult to understand the demarcation between tier 2, health services and the NDIS.

As shown in Jacqui’s case (case study 3, p. 9), adding to people’s confusion, is the need to navigate service systems that split and categorise funding arrangements based on people’s diagnoses. For people with complex or multiple diagnoses where conditions influence each other, the boundaries of services systems are not only a challenge to understand but can adversely impact on receiving adequate supports and services if one service system becomes inaccessible.

Lastly, confusion about navigating service systems is perpetuated by inaccessible information provided by the NDIA. For people attempting to access the scheme, participants frequently report that information pertaining to the NDIA’s decisions is often vague and unclear, making it difficult to know what other services they could access outside of the scheme, as well as to know what rights they had to appeal decisions. This is reflected in the quote below, which suggests that information provided by the NDIA is not only difficult to comprehend, but it gives unclear directions about next steps to follow.

Quote1: Taylor’s* experience of accessing the NDIS

I don’t think I would have gotten it [the NDIS] without Disability Advocacy’s help, and it was also really hard to find out about Disability Advocacy because the NDIS, doesn’t go, ‘we’ve rejected you from the NDIS, here’s Disability Advocacy’… They just go, ‘here is a random link to some web page that you’re absolutely not going to comprehend because it’s written in frickin bourgeois parlance.

Additionally, survey participants in RRR areas frequently reported that communication with LACs is unreliable 7. This adds another layer of difficulty with obtaining information about how and what services they could access in their area. Some attributed this to assuming that LACs were overworked. While others viewed it as poor standards of professionalism among individual LACs. This variation, as one participant explained can lead to a ‘hit and miss situation, where being enabled to access services is highly dependent on which LAC you end up with’.

The difficulties with navigating and accessing services outlined in this section contributes, in part, to an increasing demand on individual advocacy services. Adding to this increase is participants seeking advocacy support for issues surrounding NDIS access and planning, and internal and external reviews. This is discussed in the next section, which presents trends within DA’s provision of advocacy support, showing a steady increase in NDIS matters. Based on such trends, we forecast that demands on advocacy services will continue to increase unless issues surrounding thin markets, ILC programs and tier-2 services are addressed.

7 For survey findings, see p. 7 – 10, NDIS Joint Standing Committee’s Inquiry into NDIS’ Implementation and Performance (submission number 79).

the accessibility/availability of service providers to provide detailed reports in RRR areas (creating an over-reliance on GPs to provide evidence with limited time/understanding of relevant processes).
Inadequacies of standardised assessments capturing the complexity of psychosocial disabilities (leading to inadequate supports/reviews required to obtain supports).

These disparities often result in participants with psychosocial conditions being required to meet a significantly higher threshold of evidence to gain access to the NDIS/establish s34 requirements. This is reflected in our data, with the length of time to resolve a matter being 23% longer for psychosocial vs physical disabilities, and 40% longer overall in RRR communities.

Concerningly, many clients that use our service for support around NDIS access matters return for further support due to insufficient funding. In the last 6 month, for instance, approximately 31% of clients seeking support for NDIS access returned as clients seeking support for an internal review due to insufficient funding. Of these, 23% sought AAT reviews. Subsequently, we have seen an increase in the volume of cases requiring support for AAT appeals (Figure 1, below). Alongside this, as shown in Figure 2 (next page), we are observing trends that demonstrate an increase in the length of time needed to resolve matters. Here, the mean length of time has steadily increased over the past 12 months and has remained consistent over the previous two quarters. An implication of increasing demand is that many of DA’s regions have had to ‘close their books’ as advocates have full case-loads that require more resources (e.g., time and expertise).

Figure 1: Number of NDIS AAT cases at DA per quarter

[Figure 1 chart omitted/graphic]

Disability

Advocacy [ABN: 9398 4383 421]

DA data trends in NDIS matters

Increasing demand on individual advocacy for NDIS Matters

	Q1	Q2	Q3	Q4	Total
NDIS - Internal	70	66	86	87	140
Review
NDIS - Access / Planning	205	151	195	198	274

NDIS - AAT Appeals	95	77	94	129	207

NDIS—General = 22	17	14	13	57

For many PWD living in RRR, a lack of tier 2 services can increase their reliance on the NDIS. Advocates report that many health professionals and PWD view the scheme as the only way to receive meaningful and long-term support. The problem, however, is for people with low range disabilities/support needs, who are unlikely to ‘qualify’ for the NDIS - with inadequate tier 2 services in their area, the NDIS is essentially the on/y support option available. For advocacy support services, this can lead to what one advocate described as ‘panic access’ where people are ‘desperate’ for support. This then, places demand on advocacy support in matters related to insufficient plans and access.

Accordingly, over the past 12 months, there has been steady growth in NDIS matters pertaining to internal reviews, AAT appeals, and access and planning as show in Table 1 (above). While we understand this may be indicative of the increase in NDIS participants entering the scheme, it has placed a disproportionate demand on our resources. Over the previous two quarters, we see a significant trend concerning PWD in RRR areas, where approximately 61% of cases in RRR areas were identified as having difficulty obtaining adequate evidence to support NDIS evidence requirements due to limited accessibility of service providers (i.e., requiring travel to city/ towns for specialists, etc). Here, DA successfully resolved redacted % of matters in the last 12 months. However, redacted % withdrew their matters (opposed to redacted % that were unresolved), often reporting difficulty navigating the system and meeting the evidence requirements due to poor accessibility. This means that people with disability, like and Taylor (discussed early) who live in RRR areas are often disadvantaged with fulfilling the requirements needed to access the NDIS due to their locality, which has thin markets.

Further, advocates report marked differences in the quality of evidence obtained for physical verses psychosocial disabilities. This is indicated in part by a disproportionate split, with redacted % of DA clients seeking advocacy support to review NDIA decisions in the last 12 months reporting psychosocial conditions as their primary disability. Despite a significant expenditure burden, advocacy requests for reviews have more than doubled in the past 12 months within DA (see Table 1, above), and have resulted in no meaningful changes for PWD. Common issues identified by advocates include:

Figure 2: Average time needed to resolve NDIS AAT matters

[Figure 2 chart omitted/graphic]

An ideal NDIS

While this submission has largely addressed the inadequacies of the NDIS’ implementation, it is also crucial to draw out the scheme’s successes, based on participants’ experiences. The experiences provide an important marker for the NDIS’ fulfillment of its objectives. In our interviews, there was a striking commonality among participant’s who reported that they were satisfied with the NDIS. This revolved around having choice and control. For these participants having the ability to, as was one participant put it, ‘pick and choose’ workers to suit their needs was empowering. It is unsurprising that another shared commonality between these satisfied participants was that they lived in, or near, metropolitan areas or regional centres that afforded their ability choose from a thriving NDIS service market.

Choice and control should not be determined based on where people live. More measures are needed to address the longstanding disadvantage that PWD living in RRR face. In light of this, and alongside the other trends we have presented in this submission, our recommendations centre on market stewardship in RRR areas. These are revisited below as part of our conclusion.

Recommendation 1: DSS invests more into ILCs programs, or restructures how ILC funding is distributed to RRR areas.

Funding for ILC programs should address service gaps to ensure PWD in RRR areas do not fall through the cracks. As we have highlighted throughout this submission, not only do PWD often have difficulties navigating systems, but they also find it challenge attempting to access supports and services within

thin markets since the introduction of the NDIS. Moreover, participants frequently report that their ability to access services is highly dependent on their individual LAC’s experience and workloads, which can hinder their ability to link PWD with appropriate services and supports.

Therefore, we recommend that LAC’s caseloads are resourced sufficiently to attend to ILC work and that they are supported in receiving the appropriate training. Key performance indicators should be developed for DSS, NDIA and ILC in relation to ILC programs in RRR areas to monitor the effectiveness of ILC programs.

Recommendation 2: States and territories and federal governments must work together to identify thin markets and ensure tier 2 services are readily accessible in RRR areas

Following on from recommendation 1, we recommend a stronger collaboration between states and territories and federal governments to review and address the accessibility of tier 2 supports in RRR areas. As discussed, there seems to be a ‘one or the other approach’, where PWD are often shuffled between state-based supports (e.g., SASH) or the NDIS. This frequently leads to a strain on service systems, as well leaving PWD with minimal or inadequate care.

To ensure that PWD who live in RRR areas do not fall through services gaps, states and territories and the federal government must work together to identify thin markets, and develop measures to ensure that RRR areas are adequately funded to supply tier 2 services. This is particularly important for PWD who do not meet the access requirements for the NDIS and who rely on support programs.

Recommendation 3: The NDIA reviews evidence requirement for people with psychosocial disabilities

As discussed, we have observed numerous issues and inconsistencies where PWPD are disadvantaged with obtaining evidence to access the scheme. Thus, solely bolstering community services with additional funding is unlikely to address unfairness due to inadequacies and inconsistencies in how psychosocial disability to understood. We therefore recommend that the NDIA reviews evidence requirements, ensuring consistency and reducing the need for internal/external reviews and unnecessary expenditure, as well as the demand for advocacy support. The effectiveness of such a review could be enhanced through continued consultation with PWPD, and those supporting them. Including PWPD and their families in reviews is integral to illuminating how policy is experienced in the everyday lives of PWPD.

Recommendation 4: Federal government invests in developing local labour forces and incentivise working in RRR communities

With thin markets, comes a lack of choice and control. To support market stewardship, we recommend that efforts are made to develop a strong and robust labour force within RRR areas rather than rely on workers who need to travel into areas. As the evidence outlined in this submission indicates, providing funding to individual plans alone is not enough to attract service providers. We recommend that the federal government invest in a national program that firstly aims to skill up communities so that labour can be sourced from within communities. And second, aims to incentivise

specialists/professionals to live and work in RRR areas. This may aid in stimulating markets, thus providing more choice and control.

Recommendation 5: The NDIA reviews pricing guide for provider travel

NDIS participants often find that they are unable to source workers who are willing to travelling into RRR areas due to inadequate pay. Additionally, NDIS plans are often not sufficiently funded to cover costs for provider travel.

We therefore recommend The NDIA reviews the pricing guide for provider travel to ensure that it is not prohibitive of service provision in RRR areas. Moreover, we recommend that the NDIA provides a clear set of guidelines for service provider to adequately pay their staff for travel costs. This guide must take into consideration travel into areas classified as MMM4-5, where travel time exceeds one hour. In addition, the NDIA must develop guidelines for planners to ensure that PWD have adequate funds in their plans to cover travel costs for service provides. These guidelines will help with consistent and fair decision making and ensure that NDIS participants receive consistent reasonable and necessary supports and services.

Submission to the Current Scheme Implementation and Forecasting for the National Disability Insurance Scheme consultation February 2022

Rowan Cockerell, CEO, Continence Foundation of Australia

Summary

The Continence Foundation of Australia welcomes the opportunity to respond to the Current Scheme Implementation and Forecasting for the National Disability Insurance Scheme (NDIS) review conducted by the Joint Standing Committee on the National Disability Insurance Scheme.

The Foundation supports the view that any review of the NDIS and any approach to transform it must place the people it supports at its centre.1 The NDIA must act in conjunction with Australian laws to give effect to our obligations under the Convention on the Rights of Persons with Disabilities (the Convention).2 The Convention recognises the need to provide health services needed by people living with disabilities and their right to the enjoyment of the highest attainable standard of health without discrimination3 and the NDIS must be shaped to adhere to this aim.

The Continence Foundation of Australia (the Foundation) is the peak body for promoting continence (bladder and bowel control) health. The expertise of the Foundation in education, awareness, information, advocacy and NDIS service provision alongside representation in each state and territory means that we are best placed to represent the interests of individuals, carers and health professionals in relation to continence and disability.

In Australia, one in four adults experience incontinence4 and it is recognised as a disability under the Disability Discrimination Act 1992. For people living with a disability, it is an even more common experience with one in three experiencing incontinence5 which is likely to be further exacerbated for NDIS participants due to the higher impact and permanence of the disability they are likely to experience. The experience of incontinence is significantly associated with several key impacts on individuals. It is independently associated with lower quality of life for people living with disability6-9 and it can also result in lower socioeconomic and physical activity.10,11

Nevertheless, incontinence remains largely unrecognised as a key co-morbidity with other disabilities and as a disability in its own right by the National Disability Insurance Agency (NDIA). This has led to a series of discrete issues that affect NDIS participants in gaining access to and receiving appropriate assessment and care from experienced and qualified continence specialists, support to maintaining independence and facilitate community participation with regard to continence. This brings

NDIS implementation in regional, rural, and remote areas

Case study 2: Taylor*