NDIA Accountability Project

NDIS evaluation findings in rural, regional and remote Australia

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THE UNIVERSITY ofADELAIDE•

Subject: Joint Standing Committee on the NDIS - NDIS participant experience in rural, regional and remote Australia

We welcome the opportunity to make a submission to inform the Joint Standing Committee on the NDIS - NDIS participant experience in rural, regional and remote Australia. As part of the committee’s role to inquire into the implementation, performance and governance of the National Disability Insurance Scheme (NDIS), the committee will inquire into and report on the NDIS participant experience in rural, regional and remote Australia, with particular reference to:

a) the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews;

b) the availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants;

c) participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services;

d) 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; and

e) any other related matters. As a nationwide scheme, the NDIS covers rural and remote areas, and vast distances. People with disability living in rural and remote areas often face additional challenges that are distinctly different from those faced by people who live in metropolitan areas. It is therefore imperative that the NDIS is responsive to, and appropriate for, people with disability and their families and carers living in rural and remote areas. Furthermore, there are many challenges involved in the delivery of disability services in rural and remote areas including small populations dispersed across vast geographic regions, limited infrastructure, and difficulty in attracting skilled personnel. The NDIS recognises the need to ensure that it supports service delivery in rural and remote areas, particularly those that include a higher proportion of Aboriginal and Torres Strait Islander peoples. The University of Adelaide response is based on a team with extensive experience in NDIS-related research, particularly pertaining to rural, regional and remote Australia. Specifically, we have completed two large scale national research projects whose findings can be drawn upon to inform the Standing Committee’s inquiry.

  • Evaluation of the NDIS The first was the evaluation of the National Disability Insurance Scheme (NDIS) for the Department of Social Services (2013-2017). This was an extensive and multi-part evaluation that involved the design, pilot and implementation of a range of longitudinal surveys and qualitative studies over the complex and changing roll-out of the scheme. As part of this evaluation, surveys were developed and conducted with people with disability and their families and carers, and also with disability service providers and workers. In-depth qualitative interviews were also undertaken with people with disability and their families and carers, disability service providers, key disability workforce stakeholder groups and NDIA staff. The project involved a final stage of integration of all research and findings, in order to fully understand the impacts of the NDIS on people with disability, their families and carers and the disability sector.

Our evaluation found that NDIS participants living in rural and remote locations experienced poorer outcomes under the scheme. Unmet demand for disability supports was more prevalent for people with disability living in these areas due to a lack of adequate supply. Challenges in the availability and provision of disability services persisted across the course of the evaluation. Shortages of skilled disability workers, particularly allied health professionals, was also evident in rural and remote areas. In addition, the NDIA experienced organisational and staff challenges when working in more remote locations including difficulties with engagement and the dissemination of information, and in supporting locally-based NDIA teams. As an extension of the evaluation of the NDIS, we conducted the ‘Evaluation of the NDIS in the Barkly Region’1. This involved two waves of qualitative fieldwork with people with disability, and their families and carers, specialist disability providers, disability peak bodies and NDIA staff. Many of these interviews were conducted with Indigenous men, women and children living in remote areas. One of the key aims of this study was to explore the effectiveness of the operation of the NDIS in a remote area and the impact on people with disability, disability services providers and the disability sector market as a whole. The NDIS evaluation in the remote Barkly region found that:

  • While awareness of the NDIS improved with time, understanding of the NDIS and its processes remained low;

  • Levels of unmet demand for supports were high, particularly for allied health services and respite;

  • Supply of disability services was inadequate prior to the NDIS and did not improve despite the new funding;

  • There was limited evidence of new providers entering the region and the market size remained inadequate to support additional service demand;

  • Shortages in the disability workforce were coupled with the NDIA workforce encountering continual challenges;

  • While attempts were made over time to adapt NDIS processes to local need, this was made difficult with the high turnover in the NDIA workforce;

  • Choice and control remained an almost theoretical concept and the processes were challenged by the virtual absence of a viable market;

  • Outcomes for NDIS participants were variable and were poorer for those living in remote Aboriginal communities;

  • Strong advocacy had led to improvements in services and levels of social participation for some participants;

  • Wellbeing was improved for some families and carers, but the majority of people with disability did not record higher wellbeing; and

  • The number of participants in the NDIS did not reflect the high levels of disability within the region. The NDIS trial in the Barkly region was never expected to be an easy task, but at the end of the evaluation period it was still felt that both its approach and implementation were ineffective and that the NDIS had not managed to adapt sufficiently to the specific needs of the region. Extended findings from the evaluation of the NDIS in the Barkly region are provided in Appendix 1.

1 The Barkly is a very remote region in the Northern Territory. Covering an area of 322,713km2, the region includes the town of Tennant Creek and several Aboriginal communities. The Barkly region became an NDIS trial site in 2014 and informed the future operation of the NDIS in other rural and remote areas.

  • Study of NDIS Plan Utilisation A key concept underpinning the NDIS is the ability for people with disability to be able to access the supports budgeted for in their NDIS plans. One indicator of this is the rate of plan utilisation, or the percentage of the budgeted support a participant uses over the life course of the NDIS plan. However, the Productivity Commission’s 2017 Inquiry raised concerns about low levels of plan utilisation amongst NDIS participants. In 2020 the Department of Social Services commissioned our team to undertake qualitative research exploring NDIS plan utilisation and the factors which support and hinder the use of NDIS funds. The research targeted five cohorts that have been identified by existing research as being “at-risk” of plan under-utilisation: (1) NDIS participants with psychosocial disability, (2) NDIS participants living in regional and remote areas, (3) Indigenous NDIS participants, (4) NDIS participants from culturally and linguistically diverse backgrounds, and (5) NDIS participants with complex needs.

In total 161 interviews were conducted with NDIS participants and/or their family members or carers in five sites across Australia. Three of these sites were located in regional or remote areas: Townsville (QLD), Eyre Western (SA), and Barkly (NT). The interviews elicited detailed information about NDIS plans, including what elements of plans were used or not used (and why), and the factors that were considered to impact on a person’s ability to access the supports budgeted for in their NDIS plan. Participants suggested five factors enabled people to make the most of their NDIS funding and access supports and services to meet their needs:

  • A good understanding of the NDIS and how funding could be used

  • Perseverance in ensuring allocated funding was adequate and appropriate – including seeking support and advocacy if it was not

  • Availability of local services and supports in the area – and then knowing how and where to find them

  • Access to funded support coordination

  • Assistance from disability services and support workers in using funding Conversely, participants went on to identify twelve factors that acted as barriers to accessing supports and services included in their plan. They fell into three main areas – participant, plan and market factors.

Participants

  • Lack of knowledge and understanding of NDIS processes and local service provision, driven by inadequate access to clear, easy-to-understand information

  • Precedence of non-disability needs over arranging and accessing disability supports including personal, financial and health issues or work and family commitments

  • Difficulty managing appointments including challenges organising appointments and/or balancing appointments with other commitments including schooling

  • Reluctance to accept disability services due to difficulties with service providers and workers or personal and cultural preferences (for participants identifying as Aboriginal or Torres Strait

Islander)

  • Use of technology including a lack of local service supply creating a reliance on virtual supports, and lack of skills to participate independently in virtual activities

Plans and Planning

  • Challenges with NDIS planning and approval processes including complex and time consuming processes, uncertainty about which supports NDIS would fund and slow approval times

  • Lack of access to quality support coordination services including (1) support coordination not being discussed or offered at planning meetings, (2) support coordination not being funded or funded inadequately, and (3) poor quality of some services

  • Use of NDIS MyPlace Portal including difficulties using the portal, system reliability, and access to plan and payment requests

Markets

  • Availability of disability supports and services including limited access to supports and services (especially in remote regions), long wait times and availability of allied health services

  • Difficulties with provider organisations and the disability workforce including poor quality of staff and service provision, difficulties in organising services and payment issues

  • Cost of services including (1) service costs perceived as being too high, (2) increasing costs as a result of NDIS rollout, (3) NDIS participants being charged higher rates than non-NDIS participants for the same service, and (4) higher costs preventing funding from meeting full needs

  • Interface between the NDIS and mainstream sectors, including the siloing of funds. A need for further research Despite the above body of research, there is still critical need for more. Now in its tenth year of operation, the NDIS has over 500,000 active participants with the scheme forecast to cost $54.4 billion by 2026-27. Concerns have been raised regarding escalating costs, thin markets (especially in regional and remote areas), decreased funding of plans, and the high pricing of disability services. There is a pressing need for further evaluation of the NDIS in order to understand the current impacts for participants and carers, disability service providers, and the disability sector workforce and how the scheme could potentially be improved into the future. We encourage the government to invest in the ongoing evaluation of the NDIS to ensure the credibility and future operation of the scheme. A third wave of data collection would add to the previous evaluation activities and create a valuable national data set which allows for a truly longitudinal overview of the NDIS. Analysis of this data would contribute to better understanding of how the NDIS has developed over time, the experiences and satisfaction of participants, and the impacts of the scheme for people with disability and the broader disability sector and its workforce. A second evaluation of the NDIS would also offer vital learnings for the future operation of the scheme, bolstering ongoing sustainability and participant outcomes. The evaluation could also provide a starting point from which the NDIS could be monitored on an ongoing basis. We would welcome the opportunity to work with the Department on the design and conduct of such research.

Sincerely,

Associate Professor Megan Moskos

Associate Dean Indigenous Engagement, Faculty of Arts, Business, Law and Economics (ABLE)

The University of Adelaide SA 5005 AUSTRALIA

Tel: +61 8 8313 4593 Email: megan.moskos@adelaide.edu.au www.adelaide.edu.au CRICOS provider number 00123M

References:

Mavromaras, K., Moskos, M., Mahuteau, S., Isherwood, L., Goode, A., Walton, H., Smith, L., Wei, Z. & Flavel, J. (2018). Evaluation of the NDIS. Canberra: Australian Government Department of Social Services.

Moskos, M. & Mavromaras, K. (2021). Commonwealth Study into NDIS Plan Utilisation: Synthesis Report Canberra: Report prepared for the Australian Government Department of Social Services.

Moskos, M., Isherwood, L., Smith, L., Sutton, Z., Walton, H. & Mavromaras, K. (2021). NDIS Utilisation Project: Understanding Drivers of Plan Utilisation from the Point of View of Participants. Canberra: Report prepared for the Australian Government Department of Social Services.

Appendix 1: Extended Findings from the Evaluation of the NDIS in the Barkly region

Experiences of disability

  • In local Indigenous contexts, disability is an increasingly common phenomenon that communities are still struggling to understand and incorporate into cultural explanations of health and wellbeing.

  • Discussions about disability are not straightforward, as Indigenous definitions of health place less emphasis on physical concerns and more on a holistic sense of wellbeing. There is also often a reluctance to discuss disabilities as some Indigenous people may feel or believe that speaking about such issues aloud can aggravate matters for the individuals concerned. These beliefs are more likely among remote populations and less so among town-based populations.

  • Considerable prevalence of disability exists within the Barkly region. Furthermore, a high incidence of chronic health conditions which predisposes people to disability, including through amputations or other impairments, was evident.

  • Family members provide much of the care for people with disability; for Aboriginal people, this responsibility is determined by roles under kinship systems. However, many carers had their own existing or looming health and support needs, adding to the impact of disability on the community.

  • The health and support needs of NDIS participants and their carers in the Barkly region were substantial. Mobility, housing, home modifications, and transport supports were the major requirements of many of the people with disability interviewed.

  • The evaluation of the NDIS in the Barkly region identified a number of additional challenges including the high mobility of the local population, isolated travel and associated issues of worker safety, cultural activity, gate-keeping, high levels of trauma and cross-cultural communication.

Supply and demand of support services

  • Many NDIS participants in the Barkly trial site had minimal understanding of their NDIS support plan and this did not change over time. For those who were aware of their NDIS plan, satisfaction with funded supports was variable. Some participants were now receiving additional supports while others reported gaps in the services funded under the NDIS. The NDIS had had a positive impact on access to equipment and in particular the availability of mobility aids. However, a lack of adequate funding for transport, respite, support coordination and skill development was noted.

  • The NDIS had led to little improvement in the supply and quality of disability services within the Barkly trial site. As a consequence the types of disability supports able to be accessed by NDIS participants did not change over time.

  • Although peak body and service provider organisations reported that the NDIS had led to increased funding for disability supports, participants were not necessarily receiving more services. High levels of unmet demand due to a lack of service provision were being experienced, particularly for allied health services and respite.

The disability sector and its workforce

  • Limited evidence was observed of new providers entering the disability service market within the Barkly region. Moreover, concerns were expressed that the small number of new providers who had begun to offer services in the area, would choose to withdraw when the NDIS roll-out expanded into the larger population sites of Darwin and Alice Springs.

  • A lack of market development was attributed to the small numbers of NDIS participants within the trial site and a lack of provider experience and infrastructure for remote service provision. NDIS

pricing structures were also not felt to be adequate because of the higher costs of providing disability supports in remote areas.

  • The NDIS had not had an impact on the size or diversity of the disability workforce in the Barkly region. Worker recruitment and retention continued to be problematic, and a lack of provision within NDIS funding for staff training further stymied workforce development.

  • The NDIA workforce within the Barkly trial site had also encountered challenges. At least initially, insufficient numbers of local Aboriginal staff had been employed which impacted upon the capacity of the NDIA to engage with Indigenous people with disability. Although NDIA staff reported good working relationships within their team, difficulties adjusting to working in an isolated area were commonly experienced by staff who were new to the region. Choice and control

  • NDIS planning processes were considered by participants and carers to be too bureaucratic and difficult to navigate. Plan development was perceived to work better for people with good English literacy and/or computer skills and for those with strong advocates. The quality of the plan was also dependent upon the skills and knowledge of the NDIA planner. Understanding of processes of plan development and implementation was reported to be particularly poor for many Aboriginal participants which adversely impacted upon levels of choice and control.

  • Limited evidence was found of the impact of the NDIS on the choice and control people with disability had over their supports. Non-Indigenous participants and those who were self-managing their NDIS funding were reported to exercise greater levels of choice and control. A lack of local disability service provision was a primary impediment to enhanced choice and control.

  • The self-management of NDIS funding was very uncommon amongst participants in the Barkly region. While self-management was seen as providing opportunities for increased choice and control over service providers and budgets, the associated administrative requirements were considered challenging. Concerns were also expressed that self-managed funding could leave some NDIS participants at risk of exploitation. Reasonable and necessary supports

  • Understanding amongst NDIS participants and their carers of the concept of ‘reasonable and necessary’ supports was low. This lack of understanding was exacerbated by variability in the supports included by the NDIA staff in participant plans. Many NDIS participants were also unsure as to the types of supports they could request to have included in their plans.

Participation (social, economic and educational), wellbeing and aspirations (goals)

  • Some improvements in wellbeing and social and economic participation were noted for NDIS participants who were actively involved in support planning or had strong advocates. Access to mobility aids had improved the community participation and autonomy of some NDIS participants. The wellbeing of carers had also been improved through the provision of new equipment to NDIS participants and greater funding of supports was reported to have reduced financial burden.

  • Improvements to wellbeing and participation were not being experienced by all NDIS participants in the Barkly trial site. Moreover, progress towards enhanced wellbeing and social and economic participation were constrained by the limited availability of disability services and a lack of employment opportunities within the region.

  • Understanding of the use of goals and aspirations to inform support planning was challenging for many NDIS participants in the Barkly region. Inadequate time was considered to have been allocated to discussions around goals and aspirations and the appropriateness of this approach when working with Aboriginal people was questioned.

Fairness, equity and access

  • Awareness and understanding of the NDIS and its processes was greater amongst non-Indigenous participants. While awareness of the NDIS grew over time, knowledge of the NDIS remained limited for people with disability living in remote Aboriginal communities. This was in part a

    consequence of a perceived lack of effective engagement between the NDIA and local

communities.

  • The number of people with disability participating in the NDIS was felt to underestimate the total prevalence of disability within the Barkly region. Access to the NDIS for people with mental health conditions, the homeless, those in the criminal justice system and people with disability who had not previously accessed services prior to the NDIS was a particular concern.

  • The NDIS was viewed as not having been adapted to fit the specific circumstances of the Barkly region. In particular, the NDIS’s focus on disability was considered to be too narrow in the context of pressing health and social issues within remote Aboriginal communities. In addition, the individualised approach of the NDIS was considered inappropriate when working with Indigenous people with disability. The adoption of a model which was more culturally sensitive and appropriate to remote needs and service delivery was recommended. Concerns were also expressed that the lessons learned from the Barkly trial site were not being used to inform the roll-out of the NDIS in other remote areas. Mainstream interface

  • Little change occurred over time in the type and frequency of the mainstream and community services being utilised by NDIS participants. A lack of clarity between the disability and health sectors, however, was described regarding respective funding responsibilities and eligibility criteria for entry into the NDIS.

For further details about the findings of the Evaluation of the NDIS in the Barkley Region in the NT see page 252-292 of the https://www.dss.gov.au/disability-and-carers/programs-services/for-people-with-disability/national-disability-insurance-scheme/ndis-evaluation-consolidated-report

Appendix 2: Extended Findings from the Study of NDIS Plan Utilisation

The findings from our review are broadly consistent with facilitators and barriers of disability support utilisation identified in comparable international schemes examined as part of our comparative analysis. They are also consistent with the findings of our earlier evaluation of the NDIS. While all participants reported experiencing barriers to plan utilisation, participants from “at risk” groups reported additional barriers, compounding their impact. In particular, the lack of cultural awareness and understanding by both the NDIA and disability services and workers was reported as having a significant negative impact on utilisation for Aboriginal or Torres Strait Islander and Culturally and Linguistically Diverse participants. Participants with complex needs reported experiencing particular difficulties in ensuring appropriate supports were funded in their plan, and with finding services and workers with the right skills and experience to meet their needs. Similarly, participants with a psychosocial disability also reported difficulty in finding services and workers experienced in working with clients with a psychosocial disability. Participants, their family members and carers had ten main suggestions for improving NDIS plan utilisation:

  • Clear, simple and consistent information from the NDIA

  • Improved communication with the NDIA

  • More appropriate allocation of funding within plans

  • Greater flexibility in use of funding

  • Improved access to disability services

  • Improving the skills of the disability workforce

  • Greater access to support coordination

  • Improved quality of disability services including support coordination

  • Enhanced collaboration between the NDIS and mainstream sectors

  • Better recognition and support of the cultural needs of participants from an Aboriginal or Torres Strait Islander background. Participants identified many factors which determine how and why they are able to access the supports and services funded in their plan – participant, plan and market factors all play their part. Our analysis suggests that these factors are also often interrelated. This suggests that intervening in one area – such as ensuring plan funds are sufficient and appropriate – may make little difference if, for example, service and support shortages in the market are not also addressed. In short, our research shows that participants want and expect change in multiple areas so that the scheme can effectively meet their needs. Some of the interventions suggested by participants – such as improved communication – could be implemented quickly and have immediate effect. But some of their suggestions, particularly around market development, will take a longer time for their impact to be felt. The reports outlining the findings from our research can be accessed via the following links:

  • NDIS Utilisation Project: understanding drivers of plan utilisation from the point of view of participants (apo.org.au)

  • Commonwealth study into NDIS Plan Utilisation: synthesis report (apo.org.au)