Queensland, Australia
Queensland NDIS Plan Utilisation Barriers and Enablers
for First Peoples and Rural and Remote Communities:
DSDSATSIP071 Research Partnerships - Qualitative Study
Author
Kendall, E, Allen, C, Chapman, K, Barnett, L, McIntyre, M, et al.
Published
2022
Version
Version of Record (VoR)
DOI
https://doi.org/10.25904/1912/5118
Copyright Statement
© 2022 Griffith University. The copyright in this work is owned by the publisher. It is licensed under a CC BY ND 4.0 licence. This permits you to copy and redistribute the material in any medium or format for any purpose, even commercially. However, if you remix, transform, or build upon the material, you may not distribute the modified material without written permission from the publisher.
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Link to published version https://www.griffith.edu.au/research/inclusive-futures-reimagining-disability
Griffith Research Online
Queensland NDIS Plan Utilisation Barriers and Enablers
for First Peoples and Rural and Remote Communities
DSDSATSIP071 Research Partnerships - Qualitative Study
DRAFT
A joint initiative of the
MENZIES Division of Rehabilitation, Metro South Health, and Queensland
HEALTH INSTITIJTE Metro South Health I Q!!EENSLAND Queensland, Griffith University. Menzies Health Institute Government
NDIS Plan Utilisation in Queensland i
Cultural Stewardship
Cultural stewardship for this project has been provided by Aunty Lauraine Barlow. Where non-Indigenous people are involved in the leadership of research, it is important that they engage with trusted cultural advisors. Aunty Lauraine is a descendant of Mandingalpa Clan, Yidiny tribe and Kulla Kulla
Clan, Lama Lama tribe in North Queensland. Her Aboriginal
name is Jana-n Mandingalbay / Jigiddirri Jigiddirri, which means “standout willy wagtail.” Recently, Aunty Lauraine was honoured
with a third name, Buligud, which means Grandmother.
Lauraine has managed serious chronic illnesses and disabilities all her life. Two of her children have disabilities and she cares for many other children with high support needs. She is a respected member of the community and has been a community researcher since 2003, focused on improving opportunities for First Peoples.
Cultural Acknowledgement
We respectfully acknowledge the traditional owners of the lands on which this work was undertaken, and pay our respects to Elders past, present and emerging. In our methods, we acknowledge the damage and hurt caused by past generations and commit to doing no further harm through our research. Instead, we seek to always work in ways that contribute to healing and reconciliation by taking advice and guidance at every step. We are committed to the principle that research must have significant input from First Peoples at all levels, including design, methods, processes, analysis, and dissemination. Our project includes Indigenous people at every level including our reference committee, consultation group, research team, cultural stewards, and community researchers. More importantly, we endorse the foundation
principles of The Maiam nayri Wingara Indigenous Data Sovereignty Collective: that First
Peoples have the right to data sovereignty and governance. This refers to the right of First Peoples to exercise ownership over data in terms of its creation, collection, access, analysis, interpretation, management, dissemination, and use. First Peoples also have the right to autonomously decide what, how and why data are collected, accessed, and used to ensure that data on or about First Peoples reflects the appropriate priorities, values, cultures, worldviews, and diversity.
A Note on Terminology
Many different terms are used to refer to the first people of Australia, including Aboriginal and
Torres Strait Islander people, Indigenous people, First Australians, First Nations people or
relevant tribal affiliations or lands of origin. The project team acknowledge the distinct history and culture of Aboriginal and Torres Strait Islander people. In this report, the term First Peoples is respectfully used to collectively refer to Peoples who are descendants from the original inhabitants of Australia, while recognising the heterogeneous nature of Aboriginal and Torres Strait Islander clans and communities. When citing research participants and material produced by others, we use the terms they have used unless those terms are inappropriate in contemporary society.
NDIS Plan Utilisation in Queensland ii
General Acknowledgements
The project team gratefully acknowledges many people who collaborated with us, including those we have consulted, facilitators, local champions, and participants. It was no easy time in Queensland to be collecting data and yet people with disability and their families generously gave information that helped us to deeply understand their experiences. We are grateful to our sponsors in each community, without whom data collection would have been impossible. We would also like to acknowledge the many individuals and organisations who assisted with engagement and were invaluable to the study. Thanks to our talented team of investigators and researchers at Griffith University and Synapse, our partners at QDN (Troy Wolski and the team at QDeNgage), Djumbul P/L Aboriginal Consultancy Services (Jamen Wilcox) and Deaf Indigenous Community Consultancy (Jody Barney) and our supporters at National Disability Services and Western Queensland Primary Health Network. You have all provided valuable expert input at crucial times in the lifespan of this project. Finally, thank you to our Queensland Government partners (Department of Seniors, Disability Services and Aboriginal and Torres Strait Islander Partnerships [DSDSATSIP] and particularly Wendy Lewis and Kate Hine) for ongoing guidance and support.
PLEASE NOTE The views expressed in this report are not necessarily those of any of the departments or agencies that participated in this research.
This research was commissioned through the Disability Connect and Outreach Program
(DCOP), a collaboration between the Department of Seniors, Disability Services and
Aboriginal and Torres Strait Islander Partnerships and the Commonwealth Government.
Proposed Citation: Kendall, E., Allen, C., Chapman, K., Barnett, L., McIntyre M. et al., (2022).
Queensland NDIS Plan Utilisation Barriers and Enablers for First Peoples and Rural and Remote
Communities. DSDSATSIP Research Partnership. Brisbane.
NDIS Plan Utilisation in Queensland iii
Table of Contents
Cultural Stewardship …………………………………………………………………………………………………. ii Cultural Acknowledgement ………………………………………………………………………………………… ii A Note on Terminology ……………………………………………………………………………………………… ii General Acknowledgements ……………………………………………………………………………………… iii Executive Summary ………………………………………………………………………………………………….. v
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Introduction ………………………………………………………………………………………………………….. 1
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Background ………………………………………………………………………………………………………….. 1
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Research Method ………………………………………………………………………………………………….. 5 3.1 Project Aim ……………………………………………………………………………………………………… 5 3.2 Research Method …………………………………………………………………………………………….. 5 3.2.1 Data Collection ………………………………………………………………………………………….. 9 3.2.2 Data Analysis …………………………………………………………………………………………… 10
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Findings and Recommendations …………………………………………………………………………… 16 4.1 Overview of Findings ………………………………………………………………………………………. 18 4.2 Approach of NDIS staff …………………………………………………………………………………… 18 4.2.1 Improve understanding of disability perspectives ………………………………………….. 20 4.2.2 Improve appreciation of rural and remote perspectives …………………………………. 22 4.2.3 Enhance respect for First Peoples perspectives and values …………………………… 24 4.2.4 Incorporate sexuality, gender and other cultural perspectives ………………………… 26 4.2.5 Integrate parent / carer perspectives and enable access to services ……………….. 26 4.2.6 Increase fairness, consistency, connectivity and care across the NDIS …………… 28 4.3 Access to NDIS system …………………………………………………………………………………… 29 4.3.1 Simplify information and tailor communication to address participant needs …….. 29 4.3.2 Streamline validation and review requirements …………………………………………….. 30 4.3.3 Improve the speed and accuracy of decisions and communication …………………. 32 4.4 Activation of NDIS Plans …………………………………………………………………………………. 33 4.4.1 Improve plan quality to address participant needs ………………………………………… 33 4.5 Utilisation of NDIS plans and funds …………………………………………………………………… 36 4.5.1 Enhance service delivery and complaints systems ……………………………………….. 37 4.5.2 Increase local flexibility of service delivery …………………………………………………… 40 4.5.3 Record, celebrate and learn from successes in local regions …………………………. 41
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Discussion ………………………………………………………………………………………………………….. 43 5.1 Summary of Queensland NDIS Plan Utilisation Findings …………………………………….. 43 5.2 Comparison of Queensland Findings to National Findings …………………………………… 47 5.2.1 Comparison of Barriers ……………………………………………………………………………… 47 5.2.2 Comparison of Enablers ……………………………………………………………………………. 49 5.3 Recommendations …………………………………………………………………………………………. 50 References …………………………………………………………………………………………………………….. 60
NDIS Plan Utilisation in Queensland iv
Executive Summary
National Disability Insurance Scheme (NDIS) plan utilisation refers to the percentage of peoples’ NDIS plan budgets that are used in a timely way to meet their needs (NDIA, 2021a). This project sought to understand plan utilisation barriers and enablers for two Queensland populations: First Peoples and rural and remote communities. It was commissioned by the
Queensland Government’s Department of Seniors, Disability Services and Aboriginal and
Torres Strait Islander Partnerships (DSDSATSIP) at the end of 2021.
This report builds on the findings of several national NDIS plan utilisation projects, particularly a qualitative study by Moskos and colleagues (2021). Moskos’ team (2021) identified 12 barriers including not understanding NDIS processes and local service provision, problematic NDIS planning and approval processes, insufficient access to quality support coordination
services, unavailability of disability supports and services, and issues with provider
organisations and workers. They found five enablers: understanding NDIS processes and services, access to support coordination, and support from disability organisations and workers (Moskos et al., 2021). Recommendations included: enhanced information from (and communication with) the NDIS, more appropriate allocation of (and greater flexibility with) NDIS funding, improved access to disability services, a skilled disability workforce, greater access to support coordination, improved quality of disability services, enhanced coordination between the NDIS and mainstream services, and better recognition and support of the cultural needs of Indigenous participants (Moskos et al., 2021). They noted that only considering utilisation when acquiring an NDIS plan as a limitation of their study (Moskos et al., 2021).
Our study utilised an open-ended survey to collect information on the biggest problems people experienced when trying to access or use the NDIS, factors accessing NDIS success, and the most important solutions that could improve the NDIS. These questions could be answered in many ways, including online written or audio-recorded responses to an online survey, individual interviews (via telephone, in person, using sign language or through communication devices) or focus groups facilitated by local community-based research consultants. The survey was promoted statewide through organisations such as Queenslanders with Disability Network (QDN), National Disability Services (NDS) and Primary Health Networks (PHNs), with recruitment consultants targeting several regional, rural and remote regions. There were 83 participants in this study, including 65 people with a disability (or their representatives) and 18 service providers. First Peoples represented just over half of the sample (n=35). The very remote locations represented included Atherton, Barkly, Boulia, Broadwater, Cape York,
Charleville, Deuchar, Mossman, Mount Isa, Normanton, Oakey, Palm Island, Proserpine,
Sarina, Thargomindah and Yarrabah.
Research findings were clustered under recommendations relating to four NDIS phases: the approach of NDIS staff, access to the NDIS system, activation of NDIS plans and utilisation of NDIS funding. These phases were nested and interrelated, in that people were not able to utilise the funding allocated in their NDIS plans if they were put off by the NDIS approach, or unable to access the NDIS system or obtain a plan that aligned with their needs. Based on participant data, we identified 13 broad recommendations, 22 barriers, five enablers and 48 potential enablers (detailed recommendations). These recommendations, barriers, enablers and potential enablers are listed in Table 1.
There were many similarities between the Queensland and national NDIS plan utilisation research findings. They both identified more barriers than enablers, particularly in relation to NDIS processes, planning and coordination support, access to services and service delivery— particularly for First Peoples. Moskos and colleagues’ (2021) report put a greater emphasis
NDIS Plan Utilisation in Queensland v
on the strengths and limitations of NDIS participants and their parents/carers. Strengths included participant’s knowledge, understanding, effort and perseverance, whereas limitations related to pressing personal, financial and health issues that deprioritised the importance of arranging and access disability supports (Moskos et al., 2021). The current (Queensland) study revealed more focus on the strengths and limitations of the broader NDIS system as a
whole; particularly the overall approach undertaken by all levels of NDIS staff. Study
participants expressed their frustration with a system that did not seem to understand and appreciate their experiences and needs; a top-down approach that could be improved by enhancing all aspects of its user interface, from approach, to access, activation and utilisation.
NDIS Plan Utilisation in Queensland vi
Table 1: Recommendations, barriers, enablers and potential enablers (detailed recommendations) identified by research participants
Recommendations Barriers Enablers Potential Enablers (Detailed Recommendations)
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Approach of NDIS staff 1.1 Improve • NDIS staff don’t understand the • Provide staff training in disability, empathy and engagement etc.
understanding of experiences or needs of people with • Ensure that broader organisational approaches are more disability-
disability disability friendly (e.g., employing and learning from people with disabilities)
perspectives
1.2 Improve • NDIS services are not affordable or • Enhance NDIS staff understanding of rural and remote challenges
appreciation of accessible in rural and remote and needs staff through training and placements
rural and remote communities • Enhance the affordability and accessibility of services in rural and
perspectives remote communities
1.3 Enhance respect • First Peoples experience harm from • Employ more First Peoples throughout the NDIS
for First Peoples staff throughout the NDIS system • Provide First Peoples’ specific information sessions
perspectives and • Enhance the cultural awareness and sensitivity of non-Indigenous values staff through training and ‘on country’ immersion
1.4 Incorporate • People feel unsafe if their sexuality, • Increase staff awareness of safety requirements relating to
sexuality, gender gender or cultural needs are not sexuality, gender and cultural needs
and other cultural honoured. • Increase the diversity of the NDIS workforce in relation to sexuality,
perspectives gender and culture
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Address client safety needs relating to sexuality, gender and culture 1.5 Integrate parent/ • Queensland parents and carers are • Increase staff awareness of parent / carer needs
carer perspectives not able to access respite, cleaning, • Provide funding for parent / carer respite, cleaning, yard
and enable access yard maintenance, skill development maintenance, skill development and other services
to services or other supports through NDIS
1.6 Increase fairness, • People experience inconsistency • Establish a learning culture within the NDIS system
consistency, and unfairness from the NDIS • Increase staff understanding of policies and procedures
connectivity and workforce • Enhance linkages between agencies and streamline processes and
care across the paperwork NDIS • Enable participants to liaise with the same person in a conversational style
- Ensure that staff treat participants with integrity, dignity and care
- Ensure that all NDIS services are provided in a safe, ethical and caring manner, in line with each person’s needs
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Access to NDIS system 2.1 Simplify • NDIS information and • Explain the NDIS system in a simple manner (e.g., suitable for
information and communication systems do not meet people with cognitive disabilities or low literacy)
tailor
NDIS Plan Utilisation in Queensland vii
Recommendations Barriers Enablers Potential Enablers (Detailed Recommendations)
communication to the needs of people with disabilities, • Make it easy to fill out forms
address participant especially those with concurrent • Ask people how they would like to receive NDIS information and
needs challenges such as low literacy, no communication and address these expressed needs
fixed home address or • Link people to NDIS peer support groups and agencies internet/technology problems
2.2 Streamline • The NDIS system and its demands • Eliminate the need to evidence significant, permanent disabilities
validation and for repetitive processes and reviews more than once
review is overwhelming, expensive and • Extend plans and funding to last for several years, unless there are
requirements difficult to manage changes in circumstances, effectiveness or treatments
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NDIA staff seem to dismiss, ignore • Ensure that NDIA staff acknowledge the expertise of health or disregard professional reports professionals by accepting their reports and evidence
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Medical and other health • Provide regional, rural and remote health professionals with training professionals impeding people’s on the NDIS, its benefits, and how to assist their clients to receive ability to obtain relevant and useful support NDIS reports
2.3 Improve the speed • Approvals for NDIS applications and • Plan, implement and evaluate strategies to improve the speed and
and accuracy of supports take too long accuracy of NDIS decisions and communication
decisions and • NDIS communication about communication decisions is not accurate, timely or clear
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Activation of NDIS plans and funds 3.1 Improve plan • Inexperienced, unethical , unsafe or • Ability to • Develop processes to better recruit, train, connect, support and
quality to address continually changing planners and access mentor planners and coordinators, in partnership with experienced
participant needs coordinators helpful, and effective staff across the state
• Physical disabilities discounted as experienced • Enable people to access planners and coordinators outside their
medical concerns, making it hard to planners from regions, if required/requested
access health services, equipment, other areas • Ensure that people are supported for physical disabilities, including
home modifications and community • Advocacy and health services, equipment, home modifications and community
capacity building support capacity building
• NDIS participants do not understand organisations • Develop clear and accessible resources to explain what is possible
what is possible in their plans, what that help in people’s NDIS plans, what their plans mean in practice, what
they mean in practice, what they can people to they can spend their funds on, and how long their funds will last
spend their funds on, and how long develop and (including examples and case studies)
their funds will last understand • Train, assist and fund advocacy and support organisations to help
• NDIS plans are often rushed, their NDIS people develop and understand their NDIS plans
recycled, inadequate and unfit for plans, • Tailor NDIS plans to each person’s needs and ensure that they
purpose particularly in account for any changes in circumstances or treatments
NDIS Plan Utilisation in Queensland viii
Recommendations Barriers Enablers Potential Enablers (Detailed Recommendations)
• Insufficient funding in NDIS plans First Peoples • Ensure that NDIS participants receive sufficient funds to meet their
communities needs, and that this is not reduced in subsequent plans.
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Utilisation of NDIS plans and services 4.1 Enhance service • Lack of NDIS services in regional, • Good plan • Ensure that people in regional, rural and remote locations can
delivery and rural and remote locations management access NDIS-funded services including support staff, allied health
complaints • Excessive travel and/or travel-related and professionals, accommodation services, house maintenance,
systems expenses coordination tradespeople and equipment repairs
• Discrimination, abuse, coercion, poor or support to • Support service providers through base funding that allows them to
service and inadequate complaints self-manage grow, mandated induction training for support workers, policies to
systems ensure that support workers are not overloaded with work, and
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No system to ensure that NDIS traineeships to prepare for staff turnover participants are receiving quality • Improve access to telehealth services care • Minimise travel requirements and expenses
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Enhance the safety, quality and dignity of NDIS services (including cultural safety)
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Ensure that NDIS participants are supported to lodge complaints and have them rectified
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Develop a system to check on vulnerable and isolated NDIS participants to ensure they are receiving quality care
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Support NDIS participants who choose to self-manage their plans, including enabling them to share their learnings with others
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Provide local, culturally appropriate planners and coordinators for face-to-face service for First Peoples
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Ensure that planners receive tailored cultural training 4.2 Increase local • Lack of local flexibility of service • Being able to • Enable flexible service delivery for rural and remote communities
flexibility of service delivery choose who to and First Peoples, rather than enforcing procurement rules that
delivery work with don’t recognise the challenges of limited supply
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Enable First Peoples and rural and remote communities to propose innovative solutions, without being limited to particular service provider professions or restricted by employment policies that don’t enable First Peoples to be supported by other First Peoples
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ensure that people understand when (and how) they can choose who to work with
4.4 Record, celebrate • Stories on • Record, share and celebrate NDIS successes and integrate key
and learn from how the NDIS learnings into future service delivery (e.g., opportunities to share
successes in local has helped creative and innovative ways of using NDIS plans to spark ideas for
regions other participants and share challenges and solutions)
NDIS Plan Utilisation in Queensland ix
- Introduction
This National Disability Insurance Scheme (NDIS) Plan Utilisation Project was commissioned
by the Queensland Government’s Department of Seniors, Disability Services and Aboriginal and Torres Strait Islander Partnerships (DSDSATSIP) at the end of 2021, to inform the efforts of the Disability Connect and Outreach Program (DCOP)1 to increase the number of NDIS participants in Queensland and ensure that all Queensland residents have equitable access to NDIS supports. More importantly, DCOP aims to actively ensure that all Queenslanders with disability who are potentially eligible for the NDIS have the opportunity, and are supported, to seek access to the Scheme. The project builds on the findings of previous Australia-wide NDIS plan utilisation studies commissioned by the Commonwealth Department of Social Services in 2020. This study sought to understand NDIS plan utilisation barriers and enablers in two Queensland populations: (1) First Peoples and (2) rural and remote communities.
- Background The NDIS provides individualised assistance for Australians with significant, permanent disabilities through the National Disability Insurance Agency (NDIA). With support, NDIS participants develop written plans outlining their goals, needs and assistance requirements (NDIA, 2019;2021b). ‘NDIS plan utilisation’ refers to the percentage of their NDIS plan budget that is used by participants in a timely way to meet their needs (NDIA, 2021a). It is important to monitor and increase NDIS plan utilisation, as lower levels of plan utilisation are likely to correlate to poorer participant outcomes (Productivity Commission, 2017). However, it should be noted that the causal direction of this relationship is not clearly established and the complex associations between plan development, utilisation and need have not been clarified.
On 29 October 2021, the final report of the Queensland Productivity Commission (QPC) inquiry into the NDIS market in Queensland, and the Queensland Government response to the final report, were officially released. The final report contained extensive research on NDIS plan utilisation, the factors affecting it and potential responses, including the need to adopt a coordinated service delivery approach to address poor market performance and improve participant outcomes. It included findings on thin markets, and their impact on services and participant plans, especially in reference to regional and remote areas and First Peoples (QPC, 2021). This report suggested that a ‘one-size-fits-all’ approach is not appropriate in rural and remote areas, and that the NDIS (on its own) will not be able to deliver real and sustained outcomes for Aboriginal and Torres Strait Islander participants without a focus on priority issues such as housing, food security and health. The Queensland Government (2021) has accepted the QPC recommendations, two of which (43 and 45) relate to improved support coordination for First Peoples and rural and remote participants.
In 2020, the Department of Social Services commissioned research to increase understanding of NDIS plan utilisation across Australia (Melbourne Disability Institute et al., 2021, p. 4). The six research questions addressed by these projects were:
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Is there an appropriate benchmark utilisation rate for the NDIS? What happens in other individualised schemes around the world?
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How do utilisation rates compare for disadvantaged groups?
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What factors influence utilisation?
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What helps participants use their funding? What barriers stand in their way?
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What interventions might work?
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What other evidence do we need to collect and consider? 1 DCOP (Disability Connect and Outreach Program) is a Queensland Government initiative, funded by the Aust Government.
NDIS Plan Utilisation in Queensland 1
Several research methods were employed to answer these six questions. These included interviews with international experts and a review of relevant national and international literature (Dickinson & Brown, 2021), and a comparison of utilisation rates across three specific NDIS participant groups: Aboriginal and Torres Strait Islander peoples, Culturally and Linguistically Diverse (CALD) communities, and people with low socioeconomic status (SES)
(Disney et al., 2021). Researchers then modelled the impact of increasing support
coordination across these three groups (Disney et al., 2021). In another study, interviews were conducted with NDIS participants, family members and carers, focusing on participant experiences and the factors affecting their ability to access the supports requested in their plans (Moskos et al., 2021). Five NDIS participant groups were identified as being at risk of low plan utilisation in the Moskos and colleagues’ (2021) study: (1) Indigenous people, (2) people living in regional and remote areas, (3) people from CALD backgrounds, (4) people with psychosocial disability, and (5) people with complex needs.
A summary of the collective findings of these studies (Melbourne Disability Institute., 2021) is available at https://apo.org.au/node/314615 (APO Analysis & Policy Observatory, 2021). Dickinson and Brown (2021) found that utilisation rates ranged from 42-99% in similar individualised funding schemes around the world, influenced by a complex set of supply and demand issues. They did not identify utilisation targets or benchmarks in other jurisdictions and concluded that it is better to assess utilisation rates by following individuals over time or comparing groups, suggesting that high utilisation rates did not necessarily equate to good outcomes and nor did low utilisation rates equate to poor outcomes (Dickinson & Brown, 2021). Indeed, 100% utilisation rates were thought internationally to indicate insufficient funding (Dickinson & Brown, 2021). Disney and colleagues (2021) found that CALD NDIS participants tended to receive larger plans than non-CALD participants, which translated into higher spending. However, Aboriginal and Torres Strait Islander participants received larger plans than non-Indigenous participants, although their plan budgets did not translate into higher spending (Disney et al., 2021). Low SES participants received slightly smaller plans than other SES participants, but had lower fund expenditure (Disney et al., 2021). Modelling suggested that increased support coordination would increase plan spending for all three groups (Disney et al., 2021). NDIS participants, carers and family members interviewed by Moskos, and colleagues (2021) reported that the NDIS was unclear, complex, and hard to navigate, and that participants had trouble finding supports and services to meet their needs. They wanted “more support, clear information and communication, and increased quality of supports and services” (Moskos et al, 2021; Melbourne Disability Institute et al., 2021, p. 4).
The Moskos team (2021) aimed to further understand the enablers and barriers that affected NDIS plan utilisation from a participant perspective. They interviewed 161 NDIS participants, family members and/or carers in five Australian sites: Brisbane and Townsville (Qld), Western Sydney (NSW), Barkly (NT) and Eyre Western (SA) (Moskos et al., 2021). This data was analysed in relation to three categories: participant factors, plan factors and market factors.
NDIS Plan Utilisation Enablers
Moskos and colleagues (2021) identified five enablers that facilitated higher plan utilisation amongst respondents: two participant factors, one planning factor and one market factor. These were:
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Knowledge and understanding of the NDIS, disability sector and the type of services that could be accessed through NDIS (participant factor);
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The effort and perseverance that NDIS participants, family members and carers expended to ensure they obtained required funding and services (participant factor);
NDIS Plan Utilisation in Queensland 2
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Access to funded support coordination to recommend services, connect participants to service providers, organise supports and arrange invoice payments (plan factor);
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Support from disability provider workers and organisations, including coordinating and arranging personalised supports or recommending alternative providers (market factor);
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The availability of local disability services (market factor) (Moskos et al, 2021). The most commonly reported enablers were: (1) understanding NDIS processes and services (2) access to support coordination and (3) support from disability organisations and workers (Moskos et al., 2021).
NDIS Plan Utilisation Barriers
Twelve barriers negatively impacted on plan utilisation: five participant factors, three plan factors and four market factors (Moskos et al., 2021). These barriers included:
Participant Factors
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Difficulty understanding NDIS processes and how to implement plans
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Pressing personal, financial and health issues that deprioritised the importance of arranging and accessing disability supports
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Difficulties arranging and attending NDIS-funded appointments
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Reluctance to accept disability services due to service providers’ inability to accommodate (or disregard for) requests steeped in participants’ personal and cultural disposition
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Not having access to the internet or the skills required to participate in virtual modes of service provision.
Plan Factors
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NDIS planning and approval processes being too complex and time consuming, and ongoing uncertainty around the types of eligible supports
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Not knowing about (or able to access) support coordination, not receiving enough coordination funding, or coordination being poor quality and/or time limited
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The NDIS Myplace portal, which could be confusing and difficult to use.
Market Factors
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Insufficient availability of disability supports and services (especially allied health services such as occupational therapy, psychology, and speech therapy), including lengthy wait times and limited choice / control over participant supports
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Difficulties with provider organisations due to problems with service quality, organisation, staffing arrangements, payment issues and workers lacking the attitude, experience, and skills to provide quality care
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Concerns about service provider prices, including NDIS participants being charged more for allied health services and group activities than non-NDIS clients
NDIS Plan Utilisation in Queensland 3
- Poor interface between the NDIS and mainstream services (e.g., education, family services, health, housing, and youth justice), including siloing funds and services within sectors rather than taking a more holistic approach to disability care.
The most commonly reported barriers were: (1) understanding NDIS processes and local service provision, (2) NDIS planning and approval processes, (3) access to quality support coordination services, (4) availability of disability supports and services, and (5) issues with provider organisations and workers (Moskos et al., 2021).
A range of potential changes were suggested to improve NDIS plan utilisation. Moskos and colleagues (2021) classified their responses within 10 recommendations:
- Enhanced information from the NDIA
- Improved communication with the NDIA
- More appropriate allocation of NDIS funding
- Greater flexibility of NDIS funding
- Improved access to disability services
- A skilled disability workforce
- Greater access to support coordination
- Improved quality of disability services
- Enhanced coordination between the NDIS and mainstream sectors
- Better recognition and support of the cultural needs of Indigenous participants. Some of these suggested improvements spanned the participant, plan, and market factor categories. For example, respondents suggested that NDIS funding allocations should better recognise the cultural needs of Indigenous people (plan and participant factor) and develop culturally appropriate services (market factor) (Moskos et al., 2021).
Moskos’ team (2021) identified several study limitations and areas for future research and policy intervention. Limitations related to: (1) the non-generalisability of qualitative findings, (2) only considering utilisation when acquiring an NDIS plan, (3) not observing longer term NDIS impacts, and (4) limited information on the supply side of the NDIS (Moskos et al., 2021). Moskos and colleagues (2021) recommended seeking a better understanding of:
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The relationship between participant factors and policy implementation (e.g., knowing who to target and who may need additional support when navigating the NDIS system)
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The challenges participants experienced when navigating NDIS planning and approval processes (e.g., complexity and approval time), so these barriers can be addressed
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How to enhance the quality and provision of support coordination
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Systemic problems in the supply of quality, accessible and affordable disability supports, particularly allied health services in regional and remote areas
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How to address severe skill and labour shortages in rural and remote communities
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Whether the reliance on plan coordination support and management might be creating service dependencies that go against the NDIS intent to provide personalised service to people with disabilities (Moskos et al., 2021).
The Queensland Government commissioned the current qualitative NDIS Plan Utilisation Project (and a related quantitative project) to build on the Commonwealth reports described above, particularly the findings identified by Moskos and colleagues (2021). This project aimed
to understand NDIS plan utilisation barriers and enablers in two Queensland
populations/cohorts: (1) First Peoples and (2) rural and remote communities, as these groups are less likely to utilise NDIS plans (NDIA, 2022). Our study recognises that people with significant, permanent disabilities will not be able to utilise their NDIS plans (i.e., use NDIS services and funds) if they are not able to: access the NDIS in the first place or activate an NDIS plan that meets their needs. Moreover, eligible people with disability may not be able to
NDIS Plan Utilisation in Queensland 4
do so if they are not satisfied with the approach of the NDIS system (including NDIA representatives, planners, coordinators and service providers). As such, this study focuses on all aspects of the NDIS support process: approach, access, activation and utilisation. This helps to address one of the limitations of the Moskos (2022) study, which only considered the utilisation phase. Understanding how various factors impact on NDIS plan utilisation in these two groups should enhance the NDIS system’s ability to increase the number of NDIS participants in Queensland and ensure that all Queensland residents have equitable access to NDIS supports. It should also help to ensure that all Queenslanders with disability who are potentially eligible for the NDIS have the opportunity, and are supported, to seek access to the Scheme, in line with DCOP’s goals.
- Research Method
3.1 Project Aim
This project aimed to understand NDIS plan utilisation barriers and enablers, based on the experiences and insights of two groups of Queensland residents: (1) First Peoples and (2) people living in rural and remote communities. Participants included First Peoples and people living in rural and remote areas who had severe, permanent disabilities, family members of either (or both) of these populations, and people who provide NDIS supports to these cohorts (paid carers, service providers and community members).
3.2 Research Method
This study used an open-ended survey (described in the next section) which could be completed in multiple ways, including online written or audio-recorded responses or uploaded documents, through individual interviews (via telephone, in-person, using sign language or through communication devices), as well as focus groups facilitated by local community-based research consultants. Local consultants also promoted the online survey and recruited
participants for interviews. The survey elicited priority barriers, enablers and
recommendations, but these were not ranked in order of priority. Priority was determined through the number of times particular barriers and enablers were expressed by participants. The scope of the study was not limited to plan utilisation; enabling participants to report on all aspects of the NDIS process (approach, access, activation and utilisation) given the utility of this information for improving overall utilisation rates. As previously discussed, each of these elements are integral to NDIS plan utilisation, as people will not use NDIS funded services if they are dissuaded by previous experiences or reputation of the NDIS system and its approach. Negative impressions of the NDIS will prevent people from accessing NDIS support in the first place, but also from activating a plan or making sure that the plan fully addresses their needs. Experiences within the system will also impact on how people utilise services and supports in future.
NDIS Plan Utilisation in Queensland 5
RESEARCH METHOD
DATA COLLECTION QUESTIONS
(1) Biggest problems when trying to access or use NDIS (2) Factors affecting NDIS success (3) The most important solutions that could improve the NDIS
Griffith University & Synapse Consultants
Researchers/ Investigators Queensland Disability Network (QDN)
ODN consultants captured NDIS Expert input provided by a team of experiences through conducting investigators and researchers. one-on-one interviews with stories who contacted participants of the captured using the online survey. on line survey to capture more
detailed experiences. National Disability Services {NDS) Shared the link with all member organisations and encouraged further sharing across disability organisations.
Deaf Indigenous Community Consultancy
Engaged with deaf community to share & organise telephone/personal interviews.
Djumbul PL Aboriginal Consultancy
Engaged with A&TSI communities to share link to online survey, conduct focus groups & organise telephone/personal interviews.
Western OLD Primary Health Network
Distributed our online survey to A&TSI communities and rural and remote Oueenslanders in Western Queensland.
Government Partners (DSDSATSIP), Linking with our many partners to assist with engagement. Councils of Elders, Cultural Stewards, Western Old culturally safe data collection methods, community guidance and support, recruitment of participants and data collection. Primary Health Network, Disability Networks
Figure 1: Research Method Diagram
NDIS Plan Utilisation in Queensland 6
Recruitment without travel to local regions presented significant challenges, given the importance of being physically present to build the level of trust and rapport that ensures adequate engagement of rural and remote residents and First Peoples.
To overcome this challenge, local consultants were engaged to promote the survey in their local network, support its completion where requested or organise support from the research team, conduct and record interviews and, if appropriate given COVID-19 restrictions, organise small focus groups. In addition, the opportunity to participate in this research was promoted through a wide range of sources including social media, newsletters, bulletins, existing disability networks, Aboriginal and Torres Strait Islander community-controlled organisations, and peak disability and disabled people’s organisations and other community service organisations. Three organisations actively distributed the survey to their membership, including Queenslanders with Disability Network (QDN), National Disability Services (NDS) and Primary Health Networks (PHNs).
Three organisations recruited local consultants (QDN, Deaf Indigenous Community
Consultants and Djumbul Services) who were supported to recruit other participants. This method enabled trust and the possibility of longer-term relationships, understanding of local issues, and a level of engagement that could not have been achieved by the research team alone. The appointment of trusted consultants in First Peoples communities with existing networks helped to ensure that participants were addressed in culturally safe ways, and with material suitable for those with low literacy levels.
The recruitment consultants targeted the following regions:
-
Cairns, Mackay, Townsville, and Yarrabah (Djumbul Services – First People)
-
Cairns, Charleville, Cloncurry, Gladstone, Gympie, Mareeba, Mount Isa, Normanton, Rockhampton, and Toowoomba (QDN – non-Indigenous people with disability)
-
Atherton, Ayr, Cape York, and Western Queensland (Deaf Indigenous Community Consultants – First People with disability).
The map below shows where the final sample of participants were located. As can be seen, the sample included representation of all Modified Monash Model (MMM) categories (2-7), including the following locations with an MMM rating of 5-7 (i.e., very remote): Atherton, Barkly,
Boulia, Broadwater, Cape York, Charleville, Deuchar, Mossman, Mount Isa, Normanton,
Oakey, Palm Island, Proserpine, Sarina, Thargomindah and Yarrabah.
NDIS Plan Utilisation in Queensland 7
LEGEND (MMM)
Metropolitan
’b
■ 2 Regional centres '' V Bonnie Doon
3 Large rural towns ■ 4873 ' Palm Cove ' ■ 4 Medium rural towns 4879 Cairns
5 Small rural towns ■ 4870 • _ Yarrabah 6 Remote communities t<2 4871 ■
,_ 4868 7 Very remote
communities ' Artherton ' 4883
I ’
Balgal Beach
. 4816
Tropical Nth
Queensland 7 .c,,
-, Palm Island & .. Townsville o 4810 Ayr 4807 Proserpine 4800 ~ 4802 ’ Mackay 4740
Sarina
4737 .
Charleville
4470
Thargomindah
4492
Broadwater
4380 Shaded areas show regions represented by up to 5 participants. Three regions were represented by up to 10 participants - Toowoomba (4350), Cairns (4870), Palm Cove (4879). The regions are shaded according to the Modified Monash Model (MMM). Figure 2: Queensland map showing location of regional, rural and remote participants
NDIS Plan Utilisation in Queensland 8
3.2.1 Data Collection
The survey was available on the Dignity Project website with a QR code for easy access by mobile telephone or other devices: https://www.hopkinscentre.edu.au/ndis. Data collection could occur by entering text-based answers, uploading documents or audio files or requesting an interview or focus group. All methods used comparable questions to ensure consistency across the administration formats. The questions focused on people’s NDIS experiences and their priority recommendations. Each method of data collection required responses to the same three questions, after requesting a range of demographic details:
-
What are the biggest problems or challenges people with disability in rural, remote, and regional areas of Queensland (including First Peoples) have experienced when trying to access or utilise funds from NDIS?
-
What factors affect the success of the NDIS plans (in good and bad ways)?
-
What are the most important solutions that could improve the NDIS? What would you change if you were in charge of the NDIS?
Improving NDIS for First Australians and
Queenslanders in regional and remote areas
We are collecting stories to improve the NDIS. ®
People with Disability, Disability
Service Providers and Organisations. @
Private online survey. @) OR
By phone - email your phone number to dignityproject@griffith.edu.au or call 0493 370 874. @
This survey takes 15-45 minutes as much as you want to share. @)
Read the Participation Information
and Consent Sheet before starting (click on the link below). @
Click the survey that suits you. ®
Figure 3: Landing Page reached after selecting the QR Code
NDIS Plan Utilisation in Queensland 9
Aboriginal and
Torres Strait Islander
Communities in Rural and
Remote Queensland
What is your experience?
NDIS PARTICIPANTS • FAMILY • CARERS • SERVICE PROVIDERS
How can What works What is
they help? well? difficult?
Join one of ou r discussion groups to make sure your message is heard.
JAMEN WILCOX
T: 0438 207 229
YOUR INFORMATION
STAYS PRIVATE
1~11 Griffith MENZIES Metro South Health ~ii, Queensland ADivisionJoint Initiativeof Rehabilitation,of the Metro Soulh Helllth, and l!l(ll UNIVERSITY ~am.iu:,1·• g Government Menzies Health Institute Queensland, Gnffilh University.
Figure 4: Example of a recruitment flyer
3.2.2 Data Analysis
Qualitative data provided by participants were first organised into four categories: (1)
approach, (2) access, (3) activation and (4) utilisation. Sub-themes were then developed within
these categories to reflect the barriers, enablers and recommendations described by
participants. Analysis was checked independently by three members of the team to ensure the themes reflected the content shared by participants across all the methods of data collection.
NDIS Plan Utilisation in Queensland 10
3.3 Participants
NDIS Quarterly Reports indicate that two Queensland cohorts (First Peoples and rural and remote communities) are less likely to utilise NDIS plans. Queensland registered 107,635 NDIS participants with active plans on 31 March 2022, including 10,422 (9.7%) Aboriginal and Torres Strait Islander peoples (NDIA, 2022). Most participants lived in major cities (64,937, 60.3%), with 24,973 (23.2%) living in populations of over 50,000 (NDIA, 2022). Smaller communities with populations of 15,000 to 50,000 hosted 4,162 people with NDIS plans (3.9%), but 11,653 people (10.8%) resided in communities with populations less than 15,000 people (NDIA, 2022). A further 1,897 participants (1.7%) lived in remote and very remote communities (NDIA, 2022). For Queensland participants, the NDIS plan utilisation rate at 31 March 2022 was 78%, based on an average plan size of $70,100 (NDIA, 2022). Aboriginal and Torres Strait Islander and remote participants were 2% less likely than other participant groups to activate their NDIS plans within 12 months (NDIA, 2022). The March 2022 NDIS Quarterly Report suggested that plan utilisation was affected by population size and location: 80% for major cities, dropping to 78% in populations over 50,000, 73% for populations between 5,000 and 50,000, 68% for populations under 5,000, 66% for remote communities and 57% for very remote communities (NDIA, 2022).
There were 83 participants in this study, including 65 (78%) people with a disability (or their representatives; n=14 only 4 of whom were non-Indigenous) and 18 (22%) service providers. In total, 49 participants (59% of the sample) completed surveys (only 5 of whom were service providers), 18 completed interviews (all First Peoples participants; no providers) and 17 completed focus groups (13 of whom were service providers). Service providers were mostly female, only 4 of the 18 being male. All were aged over 30, with an average age of 45 years. The majority (n=14) were non-Indigenous and most participated in groups. Only 2 providers lived in very remote regions (i.e., MMM 5-7), one First Peoples and one non-Indigenous.
Of the 65 people with a disability, 51 (78%) represented themselves and 14 were represented by family members. The majority of participants were female (n=42) with 20 being male and 3 reporting non-binary status. The adults were aged between 18 and 63, with a few family members representing children under 18 years. The average age of adult participants was 43 years, but First Peoples were younger (average of 39 years) than non-Indigenous participants (average of 52 years).
First Peoples represented just over half of the sample (n=35) and 10 were represented by family members whereas only 4 of the 30 non-Indigenous participants were represented by family members. In terms of employment, 25 participants were employed in some form (38% of the sample; 15 First Peoples and 10 non-Indigenous), but only 10 reported having full-time employment (15%). This employment rate contrasted against the fact that 28 (43%) of the participants had completed training or study beyond high school (12 at university, 3 of whom were First Peoples).
Most participants (n=43; 66%) lived in rural/remote regions ranging from 2-4 on the MMM (Modified Monash Model) scale, but 22 participants lived in very remote regions classified as 5-7 on the MMM scale. Of those who lived in very remote regions, 12 were females, 8 males and 2 were non-binary. Thirteen (37%) of the First Peoples participants lived in very remote regions (only 1 of whom was male) and the remaining 22 First Peoples lived in rural/remote regions (6 males,1 non-binary and 15 females). Of the non-Indigenous participants, 9 (30%) lived in very remote regions (6 males, 1 non-binary and 2 females) and the remaining 21 lived in rural/remote regions (5 males, 1 non-binary and 15 females).
NDIS Plan Utilisation in Queensland 11
Overall, 11 (17%) participants did not have a plan because they had not applied (n=4, 2 of whom were First Peoples) or were not eligible (n=4, 2 of whom was First Peoples). Reasons for lack of eligibility were age (n=2) and ‘untested’ judgements about functional ability (n=2). The 3 remaining participants were still waiting on approvals (all First Peoples). For non Indigenous participants, 26 (87%) had an NDIS plan and 4 were either not eligible or had not applied for NDIS so did not have a plan. Although all non-Indigenous participants reported using their plans, 8 (31%) of these participants knew very little about their plan and could not provide details about either amount or duration. Some of these participants could not even provide details about the services that were being purchased.
For First Peoples, 28 (80%) had a plan. Only 4 did not have an NDIS plan (had not applied or were not eligible) and three were waiting for the outcome of an application. However, 22 (79%) of the participants with plans could not provide any details (i.e., only 6 participants knew anything about their plans) and only 11 could report any detail about how they were using their plans. Thus, at least 17 (60%) of the First Peoples participants with NDIS plans were not utilising their NDIS plans at the level expected to meet their needs and even more were unlikely to be in a position to guide the use of their plans in an informed way. Of most importance to the interpretation of these statistics is the fact that these plans were not recently awarded, which might have accounted for lack of utilisation. Rather, the plans had been awarded as early as 2017 (n=3), with the majority being awarded in 2018 and 2019 (n=5 each). Three unused plans were awarded recently (i.e., 2 in 2020 and 1 in 2021).
STATEWIDE VERY REMOTE MMM5-7
People with First Non- People with First Non-
Disabilities Peoples with Indigenous Disabilities Peoples with Indigenous
Disabilities People with Disabilities People with
Disabilities Disabilities
Have not 11 (17%) 7 (20%) 4 (13%) 3 (14%) 2 (15%) 1 (11%)
accessed an NDIS plan
Have a plan 17 (26%) 17 (49%) 0 (0%) 6 (27%) 6 (46%) 0 (0%)
but have not utilised it
Have a plan 37 (57%) 11 (31%) 26 (87%) 13 (59%) 5 (39%) 8 (89%)
and have utilised it
Total 65 35 30 22 13 9
*Percentages are rounded up
Of the total sample of 65 people with a disability, 19 (29%) had a support coordinator and plan manager, 10 of whom were First Peoples. Those with support coordinators were located in a range of different areas. Five First Peoples with care coordinators resided in very remote areas (5-7 MMM) and five resided in less remote areas. Those with a support coordinator all reported using their plans and those in very remote areas were also able to report details about their plan. However, those in less remote areas remained unclear about their plans despite the presence of a support coordinator. All non-Indigenous participants with a support coordinator reported using their plans and could report details about those plans. Only 2 non-Indigenous people with a support coordinator lived in very remote areas and 7 lived in less remote areas. Another 8 non-Indigenous people had only a plan manager but no support coordinator.
NDIS Plan Utilisation in Queensland 12
This report explores recommendations for improving Participants (Total of all PwD) Female
National Disability Insurance Scheme (NDIS)
plan utilisation in two Queensland populations. Male 83 18 65 Represented ~
~ 51 ~~ themselves Qi Represented
Participants Service PwD 14 by Family
First Rural & Remote Providers Peoples Communities • The participant group is made up of the following sub-set:
Commissioned by the Queensland Government's First Peoples Non-Indigenous
Department of Seniors, Disability Services and
Aboriginal and Torres Strait Islander Partnerships, This project aims to: 39 4 35 Represented 44 14 30 Represented 26 themselves • ~ 25 themselves • ~ ~~ ~~ Represented Ensure all Oueenslanders with d1sabil1ty who are potentially I Represented I
el1g1ble for the NDIS have the opportunity, and are supported Participants Service PwD 10 by Family Participants Service PwD 4 by Family
to, seek access to the scheme Providers Providers • •
Data collection ♦ ♦ Very remote participants (M MM 5-7) 49 18 17 24 2 22 Represented
oRJo themselves 3)) ~ 15 I I I ~~ Represented ~T1 ~~ Qi £! Participants by Family Service PwD 7 All methods Survey Interviews Focus Providers used identical Responses Groups •♦ ♦ • questions The remote participant group is made up of the following sub-set:
Very remote First Peoples Very remote non-Indigenous Cairns
Townsville 14 1 13 Represented 10 1 9 Represented • 8 themselves ♦ • ~ 7 themselves • ~ ~~ ~~ Focus Groups ~ I Represented I Represented Participants Service PwD 6 by Family Participants Service PwD 1 by Family
Providers Providers • •
A joint initiative of the
OMsk>n of Rehabilitation. Metro South Health. and Queensland G ·mth MENZIES Metro South Health I • Menzies Health Institute Queensland, Gl'ilfith University. urfitERSITY "~7'J.~ I Government I l!l1/J~
NDIS Plan Utilisation in Queensland 13
NDIS plan usage Plan range ($)
Have Plan: Have Plan: Have Plan: Have Plan: Have Plan: Utilising Not Utilising Utilising Not Utilising Utilising $19k to $582k
/ (n =17) / (n=17) (n=26 )
Start date of plans not yet used
5 5 lmJ -
Ill 3 3
C ~ -
a. 1
- n Reasons for no NDIS Access 2017 2018 2019 2020 2021
e Not applied e Not eligible e Plan Pending Start date
'Reasons for ineligibility were being too old or too capable iiiiiiiiiii Employment status (Pw D)
Have Plan: Have Plan: Have Plan: Have Plan: Have Plan:
Utilising Not Utilising Utilising Not Utilising Utilising
All First Non
PwD Peoples Indigenous
(n - 25) (n=l S) (n=lO)
Education/Employment Ratio
10 12 16
in full time are have received
employment university post-school
educated training
(FP=3) (FP=S)
• Remaining respondents attended high school/primary school only iii i i
Ajolntlnitiativeorthe
I!\~lj, GuJiERSITY·ffith MENZIES"'W,1)'11:W Metro South Health I ~(gl' QueenslandGovernment DivisionMenzies orHealthRehabilitation.Institute Queensland,Metro SouthGriffithHealth.University.and
NDIS Plan Utilisation in Queensland 14
3.4 Data Analysis
The following section of the report documents the data that was collected and the way it was
treated to prepare it for analysis. It also documents the findings and any key factors that
influence interpretation.
Data generated through this project represents a collective Intellectual Property of those who submitted barriers, enablers and recommendations. Once approved by the Department, the
findings will be shared with the Elders from each community and with all participants.
Discussions will be held with the local Elders and the Project Reference Group about how storage of the data and distribution of the findings should be managed.
3.5 Impacts of COVID-19 and Queensland Flooding
Early in the conduct of the project, it became clear that COVID-19 restrictions would come into place in Queensland to prevent spread of the Omicron variant. Queensland had already endured almost two years of intermittent lockdowns, resulting in fatigue and fear in many rural and remote regions and First Peoples communities. In response to this situation, the following decisions were made to facilitate completion of the project:
- This study originally aimed to use the Nominal Group Technique (NGT) to enable participants to identify plan utilisation barriers and enablers, describe potential
recommendations to enhance plan utilisation, and then rank them in order of importance. However, due to COVID-19 travel restrictions (January and February 2022) and severe flooding throughout large areas of Queensland (February 2022), face-to-face NGT meetings became unfeasible and there was no opportunity to delay data collection due to broader time constraints. After consulting with DSDSATSIP, the method was modified to an open-ended survey and a new model of data collection was adopted.
-
Data collection would need to avoid large group gatherings, only meeting through online events where possible. It was agreed that data would be predominantly collected during personal interviews (preferably on the telephone). The interview protocol was based on the original NGT process and used the same prompt questions to elicit responses.
-
Data collection was restricted to areas with maximum chance of success due to existing links, connections, and capacity to engage. The inability to travel and engage in person would severely impact on data collection capability. Local consultants were engaged in as many regions as possible to maximise the likelihood of recruitment.
-
Data collection was to be supplemented through an online platform where people could share their own data using recordings, text, or other form of submission. The online platform was structured in the same way as the modified interview protocol.
-
The networks already established by trusted organisations such as QDN, the PHNs, NDS and other disability support networks were used to distribute the link to the online platform and support consultants.
-
Where researcher (and consultant) travel was necessary, they were required to be double vaccinated, wear a mask and undertake COVID rapid tests before and after entering some areas.
A major impact of COVID-19 was that services were usually short-staffed and unable to respond to data collection requirements. Several group data collections were possible between lockdowns and in communities. However, most of the data were collected through online surveys. Given that NGT (Nominal Group Technique) was not able to be used
throughout the entire study, the priority of particular recommendations could not be
determined.
NDIS Plan Utilisation in Queensland 15
Towards the end of data collection, Queensland also experienced serious flooding, which again affected the ability of the researchers and consultants to travel. Flood recovery occupied community conscience and reduced the willingness of agencies to participate.
Despite these challenges, recruitment was successful in that the sample size was reasonable, and it accurately reflected different sub-populations and included representation from all levels of rurality in the Modified Monash Model. It included relatively equal proportions of First Peoples and non-Indigenous participants. Most people with disability represented themselves but a small proportion were represented by a family member (mostly First Peoples). Approximately one quarter of participants were service providers. Saturation was reached in the data analysis, in that new participants provided similar information to those who had already provided data. These similarities suggest that the sample size was adequate to expose the most relevant issues. No novel issues appeared to be emerging as the data collection continued, although some subtle differences were apparent between those who lived in more remote areas and those who lived in regional towns and surrounding rural areas. Differences were also evident between First Peoples, irrespective of residence, and non Indigenous participants. Further data collection might have revealed greater detail about specific situations, but the data suggested that participants lacked detail (which contributed to the challenges experienced when negotiating the system).
- Findings and Recommendations In this report, we have clustered the main findings into four categories, namely barriers, enablers and recommendations associated with:
- the overall NDIS system and its approach to participants
- accessing the NDIS system and being approved for funding for services
- activating an approved plan in regional/rural/remote and First Peoples context
- utilising NDIS funding in meaningful and useful ways over time. Each barrier and enabler are nested under a broader recommendation to ensure the context is retained. Few enablers were directly identified by participants, but potential enablers could be extrapolated from participant stories and so were also included. Each of these categories (approach, access, activation and utilisation) were inherently contingent upon each other, often in a circular way, as might be expected. They could not be easily disentangled in that people with disability were not able to utilise NDIS funding and supports if they were unable to access the NDIS in the first place, received a plan that did not fully address their needs, or were confused about how to activate an approved plan or prevented from accessing services due to the approach of the system.
Distinguishing the actual source of barriers and enablers to the NDIS and the utilisation of NDIS funding was also complicated by the complex intertwined experiences at multiple interfaces. Previous research in this area (e.g., Moskos et al. 2021) has described barriers and enablers as belonging to either participant, plan and market factors. Although these factors were explored in the data, the barriers and enablers in rural areas appeared to be more integrated; characterised by multi-layered and unique interactions of all three factors at each stage of the process. The cross-over between participant factors, plan factors and market factors was indistinguishable in some cases, or at best, cyclical in nature.
This study highlighted the nuanced and complex nature of living with a disability in a rural and remote region of Queensland, particularly when overlaid by other aspects of culture, gender, sexuality, poverty, family complications and the tyranny of distance. Challenges already faced by NDIS participants were intensified and magnified.
NDIS Plan Utilisation in Queensland 16
The experiences of NDIS participants emphasised the highly nuanced and complex nature of living with disability in rural and remote areas in Queensland. There were inherent difficulties
associated with separating the influences of cultural identity (i.e., First Peoples) and
geographical location on the lived experiences of disability. Many of the challenges were common for all participants but were emphasised for First Peoples or for those living in the more remote regions. For example, the depth of understanding required to appreciate and respond to the needs of a First Australian Deaf man living in a remote community would require place-based, locally informed, and dynamic knowledge, and deep understanding of nuanced experience, in addition to knowledge of disability, deafness, NDIA policies, cultural factors and the provision of health and community services in challenging environments. It would also require the ability to ensure access to interpreters, careful listening, recognition of previous harms that may influence current interactions, and development of an ongoing relationship of trust. Adding other layers of complexity (e.g., poverty, sexuality and gender, language barriers and other cultural factors) exacerbated the impact of disability as would be expected, but also impacted on the response of participants to the NDIS system and dictated the priority of disability in the overall hierarchy of needs. Participants focused on the poorly prepared nature of the workforce that constituted the complex NDIS system2 and its inability to respond to this complexity.
Participants found it difficult to understand the complex NDIS system and did not always distinguish between various elements of that system. Every interface represented the NDIS, irrespective of whether it came directly from the national agency or from a local community support worker. The manifestation of the NDIS system differed across regional, rural and remote towns and discrete communities, and across time, leading to inconsistencies and perceived unfairness.
Most participants provided information that confirmed the inadequacy of standardised or regimented responses in the face of the complexity created by the interactions between disability, culture, and remote geography. A major challenge was the complexity of the way in which the scheme was implemented at the interface with participants. As noted in Footnote 2, it became apparent that many participants labelled all their interactions as NDIS interactions, including interfaces with the NDIA and its partners (Local Area Coordinators [LAC] and Early Childhood Early Intervention [ECEI]), service provider organisations, support workers, care
planners and coordinators, plan managers, and even non-NDIS funded agencies or
Queensland State Government services. NDIS was a broad catch-all phrase that reflected any and all interactions associated with disability. Often, participants did not understand the way in which all these parts of the NDIS puzzle came together. Instead, they simply saw a fragmented network of people who all apparently represented the NDIS, but seemed to have various levels of knowledge, referred to different rules and requirements, and held different views about how to operate.
When complexity meets complexity in a complex environment, it can lead to extreme variability in experiences over time.
2 The NDIS system was poorly understood and is used to refer to the entire network of people who deliver NDIS-related services, including NDIA and its agents (Local Area Coordination partner organisations and Early Childhood Early Intervention partner organisations), disability service provider organisations, support coordinators and plan managers, other related service providers and individual support workers or therapists. Participants did not (and often could not) distinguish between these actors and the circumstances of the NDIS system differed in different regions depending on the presence of partner organisations, local providers, First Peoples organisations and advocacy groups. In addition, extra programs aimed at improving access and utilisation of the NDIS might be organised by non-Government organisations, cultural organisations, Peak bodies, health services or government departments. All these actors are labelled as “The NDIS.”
NDIS Plan Utilisation in Queensland 17
Complex interfaces account for extreme variability in experiences over time and across participants. They complicate and prevent generalisations or shorthand responses and increase the risk of negative perceptions, inconsistencies, and unexpected outcomes. The complexity generated a great deal of misunderstanding, uncertainty, and perceived inconsistency. Trust in the scheme was damaged by this situation, leading to reluctance and hesitancy. Not surprisingly, participants were confused and their trust in the system was undermined each time they experienced a negative interface, irrespective of where the source of that experience fit within the system. These multiple layers of complexity and their impact on the effectiveness of interfaces during times of vulnerability is an important consideration in understanding responses to the NDIS.
4.1 Overview of Findings
Challenge Recommendations
Approach 4.2.1 Improve understanding of disability perspectives 4.2.2 Improve appreciation of rural and remote perspectives 4.2.3 Enhanced respect for First Peoples’ perspectives and values 4.2.4 Incorporate sexuality, gender, and other cultural perspectives 4.2.5 Integrate parent / carer perspectives 4.2.6 Increase fairness, consistency, connectivity and care across the NDIS
Access 4.3.1 Simplify information and tailor communication to address participant needs 4.3.2 Streamline validation and review requirements 4.3.3 Improve the speed and accuracy of decisions and communication
Activation 4.4.1 Improve plan quality to address participant needs
Utilisation 4.5.1 Enhance service delivery and complaints systems 4.5.2 Increase local flexibility of service delivery 4.5.3 Ensure that parents and carers receive support as they do in other states 4.5.4 Record, celebrate and learn from successes in local regions
4.2 Challenge: Approach of NDIS staff
The experiences of NDIS participants emphasised the highly nuanced and complex nature of living with disability in rural and remote areas in Queensland. There were inherent difficulties
associated with separating the influences of cultural identity (i.e., First Peoples) and
geographical location on the lived experiences of disability. Many of the challenges were common for all participants but were emphasised for First Peoples or for those living in the more remote regions. For example, the depth of understanding required to appreciate and respond to the needs of a First Australian Deaf man living in a remote community would require place-based, locally informed, and dynamic knowledge, and deep understanding of nuanced experience, in addition to knowledge of disability, deafness, NDIA policies, cultural factors and the provision of health and community services in challenging environments. It would also require the ability to ensure access to interpreters, careful listening, recognition of previous harms that may influence current interactions, and development of an ongoing relationship of trust. Adding other layers of complexity (e.g., poverty, sexuality and gender, language barriers and other cultural factors) exacerbated the impact of disability as would be expected, but also impacted on the response of participants to the NDIS system and dictated the priority of disability in the overall hierarchy of needs. Participants focused on the poorly prepared nature of the workforce that constituted the complex NDIS system2 and its inability to respond to this complexity.
NDIS Plan Utilisation in Queensland 18
Participants found it difficult to understand the complex NDIS system and did not always distinguish between various elements of that system. Every interface represented the NDIS, irrespective of whether it came directly from the national agency or from a local community support worker. The manifestation of the NDIS system differed across regional, rural and remote towns and discrete communities, and across time, leading to inconsistencies and perceived unfairness.
Most participants provided information that confirmed the inadequacy of standardised or regimented responses in the face of the complexity created by the interactions between disability, culture, and remote geography. A major challenge was the complexity of the way in which the scheme was implemented at the interface with participants. As noted in Footnote 2, it became apparent that many participants labelled all their interactions as NDIS interactions, including interfaces with the NDIA and its partners (Local Area Coordinators [LAC] and Early Childhood Early Intervention [ECEI]), service provider organisations, support workers, care
planners and coordinators, plan managers, and even non-NDIS funded agencies or
Queensland State Government services. NDIS was a broad catch-all phrase that reflected any and all interactions associated with disability. Often, participants did not understand the way in which all these parts of the NDIS puzzle came together. Instead, they simply saw a fragmented network of people who all apparently represented the NDIS, but seemed to have various levels of knowledge, referred to different rules and requirements, and held different views about how to operate.
When complexity meets complexity in a complex environment, it can lead to extreme variability in experiences over time.
Complex interfaces account for extreme variability in experiences over time and across participants. They complicate and prevent generalisations or shorthand responses and increase the risk of negative perceptions, inconsistencies, and unexpected outcomes. The
complexity generated a great deal of misunderstanding, uncertainty, and perceived
inconsistency. Trust in the scheme was damaged by this situation, leading to reluctance and hesitancy. Not surprisingly, participants were confused and their trust in the system was undermined each time they experienced a negative interface, irrespective of where the source of that experience fit within the system. These multiple layers of complexity and their impact on the effectiveness of interfaces during times of vulnerability is an important consideration in understanding responses to the NDIS.
Ironically, the NDIS system was seen as the source of many challenges that prevented access, activation and utilisation of NDIS plans. This complex system lacked understanding of complex factors such as First Peoples culture, disability principles, location, gender, sexuality, race and the intersection of these factors.
The overarching approach to the NDIS was frequently perceived as the main barrier to plan access, activation, and utilisation, with one service provider going so far as to say, “Our biggest challenge is the NDIA itself” (4). Participants reported that the NDIS workforce didn’t seem to understand their intersecting and complex experiences, particularly those with added layers
of complexity created by culture and rural/remote location. Disability interacted with
geography, culture, sexuality, gender, and the dual roles of parent/carer to generate unique and complex needs that were not easily addressed within the NDIS system. The effectiveness, efficiency and appropriateness of the NDIS was judged according to the interfaces and through the articulation of its principles by all associated stakeholders, irrespective of where
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that person belonged within the system (i.e., NDIA officials and representatives, Local Area
Coordinators, service provider organisations product suppliers, support workers and
therapists and even non-NDIS community organisations through which the NDIS was advertised or advocated). The NDIS was therefore only as good as the worst component in the system (as described in Footnote 2). The interface of complex participants with a complex network of representatives resulted in a system that didn’t seem to honour diversity or choice and appeared arbitrary or even unethical in its processes and decision-making. Participants experienced a system that was inflexible, overly complicated, and punitive, inconsistent, and seemingly unfair and lacking in important philosophical orientations that would otherwise dictate appropriate and accommodating processes.
They suggested the development of a consistent, knowledgeable, and ethical workforce (i.e., the entire workforce across the NDIA, its partners, approved service organisations and individual therapists/support workers as described in Footnote 2). The fundamental principle for this entire workforce was to actively listen to, and learn from, NDIS participants and parents/carers. This suggestion required improved understanding of disability perspectives and a greater level of appreciation of rural and remote perspectives, enhanced respect for First Peoples and relevant cultural values, and a willingness to incorporate sexuality, gender,
and other cultural perspectives into plans. Participants also regularly spoke about an
imperative to integrate the needs of parents and carers where possible, given that they were often the primary source of support. Participants noted that, if deficient, these critical areas of knowledge created challenges in rural and remote regions of Queensland, and in First Peoples communities, simply because there were limited alternatives if a local provider did not have sufficient knowledge or appropriate attitudes. There were also minimal opportunities for staff in the system to acquire such knowledge, either through educational offerings or through interactions with other staff.
4.2.1 Improve understanding of disability perspectives
Participants communicated the need for staff to enhance their “knowledge and/or
qualifications in handling disabled people” (29). Enhanced knowledge and understanding of the lives of people living with disabilities would better inform service delivery. Furthermore, participants suggested that some staff specialise in specific disability areas such as deafness (56) and conditions that fluctuate over time (48, 50). Such specialised knowledge would inform NDIS policies and procedures, the NDIS service and, consequently, NDIS plan development. Participants also wanted service providers to be more accessible, empathetic, and patient (50); not judgemental (5), pushy (83) or having unrealistic expectations of improvements (29).
The above points suggest that staff training could be an enabler, including an understanding of broad and specific disability experiences and needs, and better empathy, engagement,
accessibility and expectations. It would be ideal if this training was supported by broader
organisational approaches, such as hiring (and learning from) more people with disability, and actively enhancing NDIS policies, procedures and services to be more disability-friendly. This would be consistent with a human-rights approach to disability, as endorsed by Australia’s National Disability Strategy (Australian Government, 2021).
Barrier: NDIS staff don’t understand the experiences or needs of people with disability
Participants reported that staff contributing to the eligibility determination, approval,
development and coordination of NDIS plans seemed to have “No direct disability
experience—no knowledge of complex disabilities and [their] impact on daily life” (5). Participants often reported feeling “very frustrated” (30), “ignored and powerless” (56), “cranky” (83), “shut down” (90) and “shame[d]” (82) through their interactions with NDIA staff,
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NDIA partners3, NDIS coordinators and managers4, support organisations5, and even
individual support workers. The most illustrative examples of these damaging interactions emerged from deaf participants and involved the absence of simple accessibility strategies. For instance, despite knowing that deaf people usually prefer to see the person they are communicating with (in person or through video-based programs such as Zoom, Skype or MS Teams), “NDIA officers insisted on telephoning” a participant who was unable to hear on the telephone (30). An NDIA staff member did not look up from their screen when meeting another deaf participant, which meant the participant missed important visual cues and “could not tell when a question was being asked” (56). In both cases, participants explicitly expressed their need for visual cues, but this was denied (30, 56). Some deaf participants were also expected to share personal details in front of each other, due to limited interpreter availability (88). After one participant refused and left, “The NDIS worker [wanted to] copy the same as the other Deaf woman’s business into [88’s] plan. I went mental” (family member of 88).
NDIA staff also made assumptions about participants’ needs without checking. For instance, in one case, a deaf First Peoples’ man was offended when NDIA staff pushed him to accept speech therapy and a cochlear implant. His non-Indigenous, hearing interpreter explained that “Deaf culture and Deaf Aboriginal and Islander people do not see themselves as disabled. This man does NOT want those things” (83). Limitations on interpreter hours were extremely problematic (e.g., 50 hours for a year; less than an hour a week) (82), in many cases preventing attendance at important cultural or family events. There was consensus that NDIS “hearing people … don’t understand” (90).
Similarly, a First Peoples’ woman reported that she “gave up” when NDIA staff imposed their understanding of her needs as a deaf person, saying “they tend to just keep on talking, not looking at me the person but only seeing the money they can make from me” (90). Another was forced to use her voice with a speech therapist even though she communicates exclusively through sign language. She said, “They make me feel like a little kid and shame, and I think they laugh at me when I leave and look at me like I am bad black girl” (82).
Examples of this kind emerged across the sample in other sub-groups, including the mother who did not want her son to attend NDIS meetings as the deficit-based approach caused him harm (18). She liked being able to access an experienced planner from outside her region as “This planner understood what was needed and why my son did not like attending plan reviews and how sometimes sitting in on plan reviews can knock their confidence and all the work that may have been done in previous plans” (18). Another example was a man with autism who wanted NDIS staff to work on his strengths rather than his problems (29). He said, “having complex disability requires sometimes unorthodox and complex solutions to think outside the
box. These solutions may very well produce better results. If I was to invest in NDIS
participants, I would look at their strengths, using high functioning autistics as an example a lot of us could be next lawyers, engineers, doctors and so forth, and support them to get stronger in the areas they [were] weaker. For example, Autistic individuals struggle with communication and interaction with others.“ (29)
Participants also discussed the challenge created by disabilities that fluctuated over time, do not improve in line with professional expectations, or require personalised approaches. For instance, a man with multiple sclerosis reported being deemed ineligible for NDIS support because he could sometimes drive (48). However, he had deteriorating eyesight and mobility, could no longer work, and was unable to move some mornings. He reported that NDIA staff
3 Organisations assessed and approved by the NDIA to operate in regional, rural, and remote Queensland as Local Area Coordinators or Early Childhood Early Intervention providers. 4 Service organisations that provide plan management or support coordination whether funded and approved by NDIA or not. 5 Providers of services, equipment supports or interventions through organisations approved by NDIA or professionals acting as private businesses.
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did not understand that “Multiple Sclerosis has peaks and troughs” (48). Similarly, a woman
with a neurological condition commented that her disability “can change often and is
unpredictable,” meaning that assessments would also change over time - “this needs to be understood” (50).
Confirming these claims, a service provider explained that a
similar challenge existed for all people, even those with
permanent disability. The service provider noted that “many people are needing to constantly evidence that their significant “was born Deaf, and permanent disability is still around, almost questioned why they have not been cured of their disability or that it might have grew up Deaf become worse” (5). Further, “participants are embarrassed and and will die Deaf. degraded and judged for not progressing like the book says they should” (5). Medical and specialist or allied health reports End of story.” were “questioned by people who do not have the education or experience to question them” (5). For instance, a deaf woman reported that she was asked to prove she was still deaf every year. She told NDIA staff that she “was born Deaf, grew up Deaf and will die Deaf. End of story” (81).
A man with autism, PTSD (Post Traumatic Stress Disorder) and cognitive impairment summarised the lack of understanding. He “What works for one said, “The government needs to stop looking at us disabled people as investments because participant with a significant they have unrealistic expectations. We are disability does not work human beings just trying to survive and want a better life for ourselves” (29). Participants across the board.” wanted NDIA staff to “understand that all disabilities are different” (50); “what works for one participant with a significant disability does not work across the board” (5).
4.2.2 Improve appreciation of rural and remote perspectives
The additional barriers experienced by rural and remote communities required a range of innovative solutions. One participant pointed out that “Most NDIA delegates are from the city and have never lived in rural or remote communities, so don’t know what it’s like for us” (29). Another said, “NDIS staff [are] not willing or eager to help people in remote areas as they presume that remote is the same as regional” (18). Participants commented on the need to realise that costs in remote areas are greater due to travel and related expenses, which are also added to the cost of therapists and services. Thus, although additional fees are allowed to be charged by providers for servicing rural/remote regions, this is not necessarily reflected in people’s plans and the additional costs detract from the essential services that can be funded. They also needed to realise that essential infrastructure (e.g., internet) was not always available in rural and remote areas.
Based on the above, potential enablers could include ensuring that NDIS staff understand rural and remote challenges and address needs (e.g., training and rural/remote placements), and enhancing the affordability or accessibility of services in rural and remote communities, including essential infrastructure such as internet.
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Barrier: Services are not affordable or accessible in rural and remote communities
This study involved participants in all types of localities across Queensland, ranging from categories MMM 2-7. In the NDIS, the MMM is used to determine the price rate for services and the allowance for travel (i.e., MMM 1-5 is classified as National Non-Remote and uses the standard NDIS price rate; MMM 6 is classed as National Remote, and price is about 40% higher; MMM 7 is classed as National Very Remote, and price is about 50% higher). Overall, the data suggested that more remote participants were slightly less likely than people in other regional locations to access adequate support, whereas First Peoples were more likely than all other participants to experience actively damaging services irrespective of where they lived (and were not surprisingly less likely to utilise their plans). All participants gave reports of standard NDIS services costing more than non-NDIS services, and some suggested that delivery to rural and remote areas might have constituted a deliberate and rewarding business strategy for some organisations because they could charge more for their services as well as adding significant travel costs.
To have their needs met through NDIS, people with disabilities needed to undertake a number of steps, including learning about the NDIS scheme, receiving help with their applications, seeking, and gaining medical verification of their conditions, being deemed eligible for the NDIS, engaging in the development of a suitable plan, locating, and booking relevant service providers (or a suitable plan manager and coordinator), and receiving/monitoring quality services. People with disabilities who lived in the most remote locations were more likely to be disadvantaged at each of these stages. They had fewer options in terms of medical
professionals, planners, service providers and so forth. Most importantly, essential
infrastructure (such as internet) was not accessible in many rural and remote areas, leaving participants and potential participants dependent on telephone or costly travel (52), or unable to access support at all (84). This was particularly problematic for First Peoples in isolated communities.
It was worse for mob up home on country. I went up there for six months because of Covid I wanted to help my family if anyone got sick. I stay there for six months and there is no Wi-Fi there and little mobile and too far into town to make appointments or meetings. It was peace for me to be there on country and no services, just us mob. But it was very hard for people with disabilities there because they had no supports or help. I did do lots of help with cleaning up people and helping them with cooking and cleaning, showers and moving around because many had no access like wheelchairs. We even used an old skateboard and put tin sheet on it to move people. But I came back to [a regional town] after six months because my health. I got sick again because there wasn’t enough food out bush without men to go get it. We weren’t allowed guns to kill kangaroos or goannas. We did a lot of fishing, but I had to come back and then was in hospital for two weeks. (84)
Many services were simply not available in remote areas, forcing participants to travel, sometimes over 1000km or go without assistance (45). One service provider summarised the situation, suggesting that the NDIA needs to radically change its response to rural and remote participants:
The agency [NDIA] needs to be able to adapt its processes, developed for urban areas with a population reasonably savvy, literate, and stable within societal norms. Remote and very remote communities are quite different, and things are done in a different way before culture even comes into it. We have had participants move [to a city], lose their 50% remote loading and still get far better plans at review. It is not just occurring in our community. (4)
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4.2.3 Enhance respect for First Peoples perspectives and values
Participants suggested that the NDIA could improve the cultural safety of relevant agencies by increasing the number of First Peoples employed in the NDIA (57, 80, 90), NDIS-funded services (5, 8, 94), liaison agencies helping with First Peoples’ NDIS applications (8), and the government in general (Cairns focus group). One participant put it like this:
Training First Nations peoples to be local area coordinator coordinators. NDIA delegates, allied health therapists, allied health assistance and just more of our faces everywhere. (80)
Participants also wanted “Indigenous specific sessions” describing the NDIS and what it does (8), “more creative pathways for Indigenous people to become NDIS service providers” such as unregulated providers, mentors, and business support (Cairns focus group), and “cultural / social awareness training” for staff who are not Indigenous or culturally different (Cairns focus group). NDIA staff could also consider “coming out on country”:
I wish that them at the NDIS would come out on country and learn our ways more. To make it easy for them to understand we do not see people different that we look after our own. I know many think we are lazy or do bad things but we in my community are good god people and I like people to learn respect the right way. Come and see how we do our caring and what it means for us to get this help. That we rather have no money if it means can be on country. But I know some of us can’t look after our family (like my daughter) who need help with other things. […] I think we need more NDIS to learn this way of life. (83)
It would be ideal if First Peoples were able to work in partnership with the NDIA and NDIS system to implement these recommendations. Several participants commented on the lack of respect for First Peoples co-design and consultation, and poor understanding of the notion of self-determination.
The above points suggest that potential enablers could include employing more First Peoples throughout the NDIS, providing information sessions specific to First Peoples, and enhancing the cultural awareness and sensitivity of non-Indigenous staff through training and ‘on country’ immersion. These initiatives could be undertaken in partnership with First Peoples.
Barrier: First Peoples experience harm from staff throughout the NDIS system
First Peoples (irrespective of the remoteness of residential location) experienced the expected challenges associated with the absence of services but, ironically, also experienced negative impact as a result of engaging with services. For example, First Peoples participants described NDIS planners who tried to force them to accept services they did not want or need (82, 83, 90), coordinators who harassed them to relinquish control of their NDIS funds in a way that was not reported by “white folks” (89), and service providers who abused them based on race (87) or failed to respect cultural needs even when specifically requested (94). This distinction
between First Peoples and non-Indigenous participants was pervasive and consistent
throughout the sample, the latter experiencing errors of omission and neglect, but the former
also experiencing actively ignorant treatment or deliberate harm associated with
discrimination.
The cultural safety required by First Peoples was clearly not available within the NDIS system and the awareness of NDIS was not apparent in the First Peoples system. A small selection of the harms First Peoples described experiencing during their NDIS interactions included:
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having NDIA officials incorrectly tell them what they need, rather than listen to their preferences (82, 83, 90)
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being bullied and abused by a support worker and told to “get over it” by the worker’s “bosses” in a support organisation (87)
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not understanding support workers because “they aren’t blackfellas” and being prevented from spending time with mob (94)
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not being able to attend the cultural events or activities even when this was explicitly identified in their plans, because their non-Indigenous support workers “don’t feel safe” (94)
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being overwhelmed by so many white service providers “coming and going” and not knowing “what they do or who they are” (90)
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frequent controlling and exploitative approaches by a service provider [plan manager and/or support coordinator] (89)
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evidence suggesting that the NDIS treatment of “deaf mob” differed to that of deaf “white folks” (89)
First Peoples who received poor service tended to distance themselves from further NDIS supports, unless they had access to advocates to support them (82, 83, 87, 89, 90, 94). An extreme example of the impact of culturally inappropriate support workers is the First Peoples man who deliberately leaves his group accommodation to “go out all day and night,” not returning until an abusive worker had left (87). Another is described in detail below:
I kept saying no, I was too shy to say anything else. I said not yet a lot, but they realise that I wouldn’t go to meetings if they were bullying me into doing something I didn’t understand. Because I know with other things that I’ve had to do in the past, like when they took to me about my diabetes and I was doing everything right then they still cut off many of my toes even though they said they didn’t need to, so I didn’t have much faith in what white people had to say because it makes it worse for me. […] I went into the meeting with all my paperwork because they wanted me to sign over everything to do a Centrelink and I was worried because Centrelink have done wrong by us so many times with no interpreter, I didn’t want that to happen again. …So now that I get the NDIS it’s better but at the start there was a lot of yes, she can have support worker and then they said no you can’t get a support worker, so I’ve got confused pretty quickly. […] I thought if I make a complaint, they may cut my funds even more and make it more difficult but my recent plan meeting I did ask for them to put it up again because we got a new report from the hospital about my balance and my movement (mobility). The hospital said that I might need a wheelchair soon because my feet are bad and that’s not good for me it’s very scary. I don’t want a wheelchair, but it is easier to get me around the shops. I have a cane now but sometimes I get pretty dizzy and
tired. [...] I know that when I ask for interpreter, they get one, when I ask for
gardener or cleaner, I don’t get them. (82)
Most First Peoples preferred to be supported by, other First Peoples, which required some flexibility in conventional rules. A service provider (5) explained that NDIA staff have:
Little to no understanding of culture or the impact of decisions that are values based as opposed to real-life-based. People of culture with genuine anxiety around mainstream supports [are] being instructed that they cannot use the supports that have been working for them for a long time. [They are being] threatened with NDIS action if they continue to use their third cousin or their community member as a support worker, despite having a very clear relationship of trust with the person.
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One participant described her preference to have “Aboriginal women” help her, particularly with showering and attending cultural events (94). However, she could not find anyone to support her because community members were not able to pass relevant police checks (94).
4.2.4 Incorporate sexuality, gender and other cultural perspectives
This recommendation on incorporating sexuality, gender and other cultural perspectives was identified as a way of addressing participant reports of harm relating to these factors.
Barrier: People feel unsafe if their sexuality, gender or cultural needs are not honoured
The intersection between sexuality, gender, and culture (non-Indigenous cultures as well as First Peoples) affected peoples’ needs and NDIS experiences in rural and remote areas. The intersection of multiple identities created a complexity and the need for flexibility that was not accommodated by the NDIS. Most First Peoples participants wanted to receive assistance from people of their own gender and culture to enhance their feelings of safety, but this was rarely practised. For instance, a Torres Strait Islander man reported found it difficult to access a male interpreter who knew “Islander/bush” sign language to help with “hospital and doctor appointments, deaf events and “deaf mob gathering[s]” (83). Similarly, a First Peoples woman expressed the need to be showered by First People’s women but was denied (94). Personal safety did not appear to be a consideration for people who identified as LGBTQI+. Instead, they were encouraged to remain silent, which meant their needs were unlikely to be expressed and met. As one participant noted, the most significant challenge was finding “staff [who] are safe to engage with when you are CALD and LGBTQI+” (33). A First Peoples participant described how a female support worker refused to keep working with him when she learned of his LGBTQI+ status (86).
Based on the above, potential enablers could focus on: (1) increasing staff awareness of safety requirements relating to sexuality, gender and cultural needs, (2) increasing the diversity of the NDIS workforce, and (3) addressing safety needs relating to sexuality, gender and culture (e.g., ensuring that people can access support from people of the same gender, culture and sexuality as required/requested).
4.2.5 Integrate parent / carer perspectives and enable access to services
This recommendation was based on the following data, outlining a barrier around Queensland parents and carers not being able to access support. Participants linked this to a lack of understanding of parent / carer experiences and needs, and an inequitable system, that didn’t provide the same level of support for parents and carers in Queensland as it does in other states and territories.
Barrier: Queensland parents and carers are not able to access respite, cleaning, yard maintenance, skill development or other supports through NDIS
Queensland parents and carers reported not being able to access supports that are received by carers in the rest of Australia. For participants, this inability to support their family and carers was particularly distressing, given their heavy reliance on family in rural and remote regions and in First Peoples communities. A service provider described Queensland’s parental responsibility policy:
This [parental responsibility policy] is [a] terrible form of discrimination. Parents of profoundly disabled children receive different supports depending on where they live geographically. Parental responsibility in Queensland means that most parents
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cannot get assistance from support workers while other States fund supports. Parents of these children have to provide over and above care 24/7, there is no let
up. It is not a normal household and yet they cannot get cleaning or yard
maintenance despite not having the time, energy, or mental health to cope with such issues. The rights of parents to receive adequate support to assist in caring for profoundly disabled children needs to be consistent across the country. This is a federal scheme and should not be drawn back to state issues. (5)
A father said the NDIA should “take into consideration [that] respite for parents can actually be good for the family” (23). A mother living in a very remote region of Western Queensland thought this approach might be rectified by “teaching a carers point of view to the LAC (Local Area Coordinator) organisations rather than feeling their judgement is enough” (18). She stated that:
The mental drain that is taken on [by] parents, and normal jobs that yes would be assumed parent responsibility. […] Assisting carers with these responsibilities would allow them to put more time into the person in their care or into themselves which would boost their energy and assist with building and strengthening their mind and functional capacity, to help the person in their care, therefore limiting the mental drain (18).
Other challenges experienced by parents/carers included the need to address potential parent/carer limitations and learn new skills to support their family member, the importance of considering sibling needs and improving sibling relationships and giving respect to family wishes relating to adults who are unable to care for themselves. One service provider pointed out that parents and carers may also have undiagnosed disabilities, cognitive impairments, mental health concerns or low literacy levels that impact on their ability to meaningfully engage in and understand the NDIS system (7). They may themselves be unwilling to engage with the NDIS due to stigma and/or may not understand the disability system or the nature of their family member’s disability (7). The difficulty of navigating the NDIS system while caring for other children was also identified as a barrier, particularly when the time required by the system was considerable and conflicted with other caring responsibilities. One mother said that she felt “powerless in the system,” finding it “hard to keep up with the NDIS” as she had three other children to care for as well as her disabled child (53). One woman spoke about her adult grandson who was unable to look after himself but did not want to live in the shared accommodation that had been approved (57). This situation left him “roaming the streets” with the potential of ending up in jail (57). Despite this risk, she could not be supported to provide him with a decent home. It was suggested that NDIA staff may need to work alongside parents and carers to better understand their experiences and jointly determine a way forward.
Parents and carers should be able to receive support as a priority, in line with other parts of Australia. In addition to respite and household maintenance, NDIS funded services for families/carers could include “supporting parents on their carer journey” (18), assisting with travel and face-to-face appointments for parents and children (53), supporting children to understand their sibling’s disability and ongoing therapy (53), enabling parents/ carers and teenage NDIS participants to obtain life skills such as “cooking, cleaning, shopping and budgeting” (62, 23) and helping carers who also want to become service providers (18). Their reliance on families/carers in regional, rural, and remote areas and particularly in First Peoples communities was profoundly important to participants. They were aware of the impact of their disability on family members who were providing care and believed that one of the best outcomes for them personally was to have their families well supported and educated. In the context of restricted service choices, the importance of family was magnified.
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Based on the above, potential enablers could include increasing NDIS staff awareness of parent / carer needs, and the ability to fund respite, cleaning, yard maintenance, skill development and other services.
4.2.6 Increase fairness, consistency, connectivity and care across the NDIS
Barrier: People experience inconsistency and unfairness from the NDIS workforce
Participants wanted the NDIS workforce to enhance its general NDIS knowledge, ethics, and approach. This included employing “planners with real world experience” (Townsville focus group), ensuring that all NDIS staff know the correct information (18), and understanding that LACs (Local Area Coordinators) do not always work in an effective manner (5).
By and large, the participants I deal with hear from their LAC at review time only. It is always a new LAC and there no consistency at all. The system in our area is that one LAC does the review, another writes it up, another answers phone calls etc. The participants do not [have] confidence that they will not be required to tell their life story to every person on every phone call. The decision to change the way in which LAC services were delivered was clearly not a consultative process and did not take into account the anxieties and complexities of participants themselves.
Participants criticised some NDIA staff and partners (i.e., planning and coordination teams) for expressing favouritism (37), interpreting things in “vastly different ways” (20), and altering “the definitions of what is medical” to prevent people from accessing necessary supports (5). The approach of the NDIA in determining eligibility and access to NDIS lacked “consistency and fairness” (5) and was compounded by an approach that treated people as if they were “criminal[s] on trial” (51), “overriding agency directives and [standard operating procedures] SOPs (standard operating procedures)” (4) and having a “culture of denial and bullying” that “sickened” one NDIA service provider enough to make them leave the NDIA (4). This service provider said, “The agency needs to read its own spin and actually LISTEN, LEARN and then DELIVER” rather than denying or ignoring issues, or telling people “that’s just the way it is” (4).
Participants suggested enhancing the relationships between LACs and participants (35) by providing “down to earth explanations” (51), being more accessible for contact, patient and empathetic (50), and honing their listening skills, mindset and understanding that every circumstance is different (18). People with disabilities (and their parents/carers) wanted to be more connected and engaged with the NDIS. “Feeling you are being heard and supported […] increases […] communications with all parties and [provides a] better understanding of processes required” (53).
There was a clear preference among participants to meet with the same person (ideally a local matched on gender and culture) over time, using a conversational style informed by local customs, allowing the development of trust and rapport. This liaison person would listen, help, explain things in clear language, negotiate with the system if needed, monitor wellbeing, provide clear explanations of the NDIS, assist in making forms easy to understand and complete (particularly for people low literacy or language barriers), smoothing the linkages with related services (e.g., medical professionals understanding the system and providing good verification data, and service providers who meet peoples’ needs - including the need for cultural safety). Ultimately, participants wanted a system that worked together as a streamlined whole; not bombarding them with questions at every turn or ticking boxes rather than being responsive or requiring unnecessary and time-consuming paperwork. Most
importantly, participants asked to be treated, with dignity, by knowledgeable, caring
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professionals who understand disability and culture, have no potentially corruptible
motivations, and are willing to tailor the system to suit the needs of each person.
As such, potential enablers could include establishing a learning culture within the NDIS; increasing staff understanding of policies and procedures; enhancing linkages between agencies and streamline processes and paperwork; enabling participants to liaise with the same person in a conversational style; ensuring that staff treat participants with integrity, dignity and care (e.g., down-to-earth explanations, active listening, responding to preferences and needs, being accessible, patient and empathetic), ensuring that all NDIS services are provided in a safe, ethical and caring manner, in line with each person’s needs.
4.3 Challenge: Access to NDIS system
Notwithstanding the challenges created by the complexity of the structures, inconsistency at
the interfaces and the overarching lack of knowledge about disability, cultural, and
rural/remote issues in the workforce; NDIS support was often inaccessible due to fundamental literacy/language barriers and connectivity challenges, lack of qualified and experienced local support to navigate the system, and the additional time and expense associated with living in rural/remote locations. Participants provided numerous ideas about how this process could be rectified, particularly simplifying and tailoring communication to the context of rural/remote and First Peoples communities, streamlining the validation and review requirements to reduce unnecessary costs and time delays, and improving the relevance of processes and decisions.
4.3.1 Simplify information and tailor communication to address participant needs
Barrier: NDIS information and communication systems do not meet the needs of people with disabilities, especially those with concurrent challenges such as low literacy, no fixed home address or internet/technology problems
Most information and communication mechanisms within the NDIS system were not designed to work for people with disabilities, particularly those with concurrent challenges such as poor access to internet, unfamiliarity with technology, low literacy levels or no fixed home address. One participant noted that even “articulate, university educated [people with] fairly strong personalities [and] good resources find it tough to get through the system”, causing some to “give up trying” on their first attempt (30). As a female carer described, there were barriers at every step:
The first problem was knowing what was needed to access or be considered for NDIS. Understanding how the whole NDIS system works. Understanding how to view the information, to help the person in your care. Understanding the language of NDIS. Compiling all the documentation that was needed for NDIS. (18)
One male participant reported experiencing “emotional and psychological damage” while “getting onto the NDIS scheme.” He said the “NDIA needs to write the system in a way disabled people understand. Considering [the] NDIS scheme is intended for disabled people; we need to be able to understand it. If we understand it, we can utilise it a lot more” (29). A First Peoples’ woman explained, “It needs to be done our way. It’s gotta be simple and easy to understand. We ain’t all got good schooling […] to work it out” (90). Similarly, a First Peoples man wanted simple questions and uncomplicated ways to complete forms (83).
People with disabilities and their parents/carers required communication to be tailored to their specific needs throughout their NDIS journey. This requirement could mean a range of strategies applied as needed, including ensuring access to interpreters with specific skills
NDIS Plan Utilisation in Queensland 29
(e.g., Islander sign language) particularly at important meetings (83), nominating or
designating an appropriate agency to receive communications when participants do not have a fixed address or cannot (or do not wish to) read (4), typing messages into people’s
communication devices if requested (94), using video-based programs like Zoom if people
could not communicate well on the phone (30), telephoning people who lived in remote areas without access to reliable internet (52), taking time to look at people when asking questions (56), and enhancing the usability of the NDIS portal for people who “are not technology savvy” (18). Many participants preferred face-to-face support, suggesting that this could occur through appropriately trained medical practitioners or GP staff (17, 18), disability advocates (30, 50), intermediary agencies (4, 6, 53), “staff who are safe to engage with when you are CALD and LGBTQI+” (33), or friends and family (20). One service provider described their efforts to help:
We are able to refer our clients straight to a NDIS support worker - whose job is to support the application process for our clients. They have direct access to all supporting documentation/assessments due to the shared data systems. This hopefully provides a smooth application process because of the continuity of care by the same person. (8)
One participant explained that “knowledge is power;” advising NDIS applicants to surround themselves “with people who have been there and learned [how to navigate NDIS], such as
support groups, Facebook etc” (50). Another said NDIS applicants should “not be
disheartened” from an initial application rejection, as the “NDIS have a habit of knocking back” the first one, so people should “ALWAYS REAPPLY” (51). Similarly, First Peoples wanted “more Aboriginal and Torres Strait Islander workers to help participants through the application process” and Indigenous specific sessions about the NDIS and what it does (8). These sessions should be facilitated in-person by local, culturally appropriate staff (Cairns and Townsville focus groups), using a conversational style (Cairns focus group), explanations of what things would be like in practice in ways that meet participant needs (83), and an ability to form an ongoing connection with a consistent interface representative (58). This level of flexible yet tailored communication links back to previous points about the need to listen to
NDIS participants and their parents/carers, and follow their lead, rather than making
assumptions based on a one-size-fits-all approach.
Based on the above, potential enablers could include:
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Explaining the NDIS system in a simple manner (e.g., suitable for people with cognitive disabilities or low literacy)
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Make it easy to fill in forms
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Ask people how they would like to receive NDIS information and communication and address these expressed needs
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Link people to NDIS peer support groups and agencies. 4.3.2 Streamline validation and review requirements
Barrier: The NDIS system and its demands for repetitive processes and reviews is overwhelming, expensive and difficult to manage
Most participants were overwhelmed by the NDIS system and its heavy demand for repetitive processes and regular reviews. One participant suggested that the process of obtaining NDIS support can cause more harm than good to people with disabilities, particularly in the preliminary stages: “The first year for me was exhausting, it took time to learn, gain confidence,
NDIS Plan Utilisation in Queensland 30
[and] learn how to manage services, communication, and my energy so it was a benefit to me not a burden” (50). In a similar vein, a service provider explained:
Participants have a hard time meeting the NDIS barrage of questions each planning meeting and throughout their journey. They are overwhelmed by them from the planner, allied health professionals and us, the service providers, simply to comply with agency requirements. (4)
Another participant pointed out that “the overuse of unnecessary assessments and
reassessments is expensive and difficult for the person receiving supports” (23), particularly when reviews necessitated inconvenient travel to other towns or cities to access professionals or delays while waiting for overburdened local services and/or visiting specialists.
A service provider called for the NDIA to stop requiring “people who have been assessed to the hilt [to] undergo useless assessment to satisfy a paper requirement,” forcing them to “evidence a significant and permanent disability over and over again” (5). Participants were particularly keen that the impost of this process for rural and remote and First Peoples should be considered more carefully by the NDIA. They believed the NDIA could also consider retaining previously demonstrated successful solutions to “save everyone the trouble of reviews and reporting every year” (33). Unless circumstances had dramatically changed, new diagnostic and/or treatment regimens had emerged, or new innovations had been developed, then solutions that had worked in previous years were likely to work in each successive plan. Many participants described unexplained funding cuts that affected their ability to continue successful interventions (20). Conversely, if circumstantial changes were impacting on the nature of support required, plan revision was essential but was often not enabled or not triggered until such time as it was officially due to occur.
Barrier: NDIA staff seem to dismiss, ignore or disregard professional reports
This negative experience was compounded when NDIA staff (i.e., those who were assessing eligibility for NDIS) did not appear to read or give credibility to “reports that are painstakingly hard to get” (18), ignored evidence “because it doesn’t neatly fit into their requirements” (4), or disregarded reports from some professionals because they did not like them (5).
The above participant suggestions suggest that potential enablers to streamline validation and review requirements could include:
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eliminating the need to evidence significant, permanent disabilities more than once
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extending plans and funding to last for several years, unless there are changes in circumstances, effectiveness or treatments
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ensuring that NDIA staff acknowledge the expertise of health professionals by accepting their reports and evidence
Barrier: Medical and other health professionals impeding people’s ability to obtain relevant and useful NDIS reports
The presence of such stringent rules and requirements meant that medical and other health professionals may actively or inadvertently impede people’s ability to obtain relevant and useful NDIS reports. This was described as a particular challenge in rural and remote areas or First Peoples services where exposure to disability was less frequent. In these areas, participants could not ‘shop around’ for providers and medical practitioners to support their applications and had to rely on inexperienced or unsupportive providers. The most extreme example of this was a case where the only local doctor refused to prepare a NDIS report, because they “judged the NDIS as the biggest waste of money” (18). Another participant described how their doctor “responded to yes or no questions with only yes or no responses
NDIS Plan Utilisation in Queensland 31
but didn’t expand,” which prevented acceptance into the NDIS system, even though the psychologist’s report provided extensive detail about cognitive and intellectual impairments (29). Local general practitioners were often extremely busy, through being the only provider in town and/or servicing several surrounding regions. They had only sporadic exposure to NDIS processes, so did not appreciate the importance of this paperwork. NDIS challenges were also noted in relation to other health professionals. In one case, an occupational therapist inadvertently invalidated a participant’s application by focusing on the person’s health condition, rather than the fact that they had an amputated leg (22).
One participant observed that NDIA was not providing feedback or regular education to rural/remote professionals on how these errors could be rectified (44). She was told she was ineligible for the NDIS, “when something as simple as paperwork from [her] doctor could have been utilised to help with a successful application” (44). As such, a potential enabler could be providing regional, rural, and remote health professionals with training on the NDIS, its benefits, and how to assist their clients to receive support, particularly in small towns where limited choice of providers constrained participants’ ability to seek alternative providers.
4.3.3 Improve the speed and accuracy of decisions and communication
Participants wanted NDIA processes and decisions to be expedited and accompanied by more appropriate communication, thus this has been included as a recommendation.
Barrier: Approvals for NDIS applications and supports take too long
As one service provider explained, “Participants are tired of the time delays in approving urgent supports. Normally by the time they go back for review it is because they are in crisis” (5). Another said, “applications and gaining approval can be time consuming - especially if
supporting documentation is not correct” (8). One NDIS participant reported that
“communication with NDIS staff is always a battle to get down-to-earth explanations. Makes me feel like a criminal on trial. It’s like other insurance companies, DELAY, DELAY, DELAY, deny” (51).
Barrier: NDIS communication about decisions is not accurate, timely or clear
One extreme example of communication problems included several participants being told they were not eligible to receive a particular support and then discovering it had already been
approved (30). This challenge appeared to reflect the multiple layers through which
information passed prior to reaching the participants and miscommunications along the way. In rural and remote areas, the delays were exacerbated by the inability to speak face-to-face with NDIS representatives, increasing the likelihood of misunderstandings. For First Peoples participants, the communication process was complicated by the absence of familiarity with large systems and low literacy levels or language barriers. Accurate interpretation of NDIS information into localised and accessible information was challenging. The interpretation into accessible language needs to occur at the level where the decision is made.
Participants wanted quicker review times (32, 44, 51) and shorter waiting times before receiving equipment (47). They also wanted the ability to contact their NDIA representatives (34, 35) easily and directly and with greater clarity to prevent “communication and information breakdowns”.
Based on the above descriptions of barriers, a potential enabler could be to plan, implement
and evaluate strategies to improve the speed and accuracy of NDIS decisions and
communication.
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4.4 Challenge: Activation of NDIS Plans
Rural and remote participants who had been approved for NDIS support often struggled to activate their plans, but this was particularly true for First Peoples participants who were most likely to have unused funds. Participants wanted quality plans that recognised and addressed their specific needs, were flexible, and supported parents/carers who were vital to their quality of life and independence in the community. The ability/willingness to activate a plan depended on the personal relevance of the plan, the perceived safety of using local services, clarity about what has been approved and fears about running out of funds. Activation of a plan was dependent upon the availability of core services, but also on the availability (and funding for) ancillary support services that contribute to a comprehensive plan (i.e., funds to purchase core services are not helpful without the ability to purchase support services or equipment that facilitate the ability to participate and take advantage of the opportunity). This partial nature of NDIS plans was problematic in rural and remote regions due to restricted service networks, product shortages and lengthy delays associated with excessive distances.
4.4.1 Improve plan quality to address participant needs
Barrier: Inexperienced, unethical, unsafe or continually changing planners and coordinators
In the context of small remote towns, one participant noted that “there is too much favouritism” due to “the planners know[ing] everyone” (37). This participant suggested that plans should be “formulated and revised outside of the remote planners’ [NDIA] hands.” The lack of experience of planners created significant problems, particularly in cases where planners and other NDIS staff were constantly changing. The participant noted that her town in remote Western Queensland could not “seem to keep an LAC” (18). A First Peoples woman who lived in a very remote location provided a particularly concerning account of her experiences with her NDIS planner. This story highlights the impact of a small town, a power imbalance, and judgemental attitudes on the ability to utilise NDIS funding in meaningful ways:
When I came to my plan review last year I was scared. The LAC made me feel really dumb. I was afraid she would think I was a bad mother because I couldn’t do all the things a good mother should do, like cooking, cleaning, washing, talking, and looking very nice so my child would not be embarrassed. I wanted to ask her to give me more help in my plan so a support worker could teach me how to do things in the house and how to make myself look nice. It takes me a very long time to learn but I want to try. I told her that my support worker and my OT (Occupational Therapist) had written everything in their reports about what I could not do for myself. But she said she wanted me to tell her not somebody else. Then she asked me about doing things in the house and doing things for my child. I was scared that she would say I was a bad mother so everything she asked me I said that I could do very well which was not true. So this is why I did not get the extra funding that my OT said I needed. I have been lucky that my support workers will work for a lot less money than they should get so to give me more help, but I feel really bad about it. (62)
Enabler: Ability to access helpful, experienced planners from other areas
A participant in a remote community reported finding it “helpful to have a planner from another area” who “had done several plan reviews and understood what was needed” (18).
Building off the barrier and enabler cited above, potential enablers could be to develop a process to better recruit, train, connect, support and mentor planners and coordinators, in
NDIS Plan Utilisation in Queensland 33
partnership with experienced and effective staff across the state, as well as enabling people to access planners and coordinators outside of their regions, if required or requested.
Barrier: Physical disabilities discounted as medical concerns, making it difficult to access health services, equipment, home modifications and community capacity building
Participants were concerned that NDIS supports were limited in terms of health services for physical disabilities, equipment, home modifications and community capacity building. A service provider warned “that people with physical disabilities are generally less likely to gain supports […] than people that can evidence mental health concerns” (5). They went on to say that “the definitions of what is medical appear to vary to suit the audience” with ‘the scheme” being designed to prevent people from accessing necessary supports; prompting some service providers to work “pro bono” to address “clear disabilities” that have been discounted as “medical concern[s]” (5). This service provider also spoke about a lack of “clear direction” in relation to “disability related products,” suggesting that NDIS participants should be treated in a more holistic manner—able to obtain support for any disabilities, even if they are not the ones listed in their NDIS plans (5).
Most items can be considered disability specific if one looks hard enough. A person with continence issues can buy all their product […] normally without issue, and this is great, but when they need special shoes for support, they are being told they are not disability related, when clearly, they are. If you would not normally purchase a product but only do because you have a disability, then it is specific to your disability. (5)
Participants also talked about the need for “clearer instructions as to assisted technology items for approval” and “more realistic rules” for purchasing or hiring disability vehicles (51); with one person stating that “the process of getting new equipment is exponentially harder than [the] previous system” (32). One participant reported difficulties accessing “capital supports for home modification” and the “lack of community capacity building supports” as key barriers (35).
This suggests a potential enabler around ensuring that people are supported for physical disabilities, including health services, equipment, home modifications and community capacity building.
Barrier: NDIS participants do not understand what is possible in their plans, what their plans mean in practice, what they can spend their funds on, and how long their funds will last
The onus for developing a quality plan appeared to lie with participants, many of whom did not know what was available or possible. Participants struggled with the “lack of information […] to know what assistance [could] be given” (17). One said, “there is a lack of support in knowing what to ask for, especially for first plans, if you don’t know to ask the right questions” (18). Another mentioned the challenge of “knowing what help is available, and how to get it, and who to ask (31). This seemed to relate to the quality of information, not just the quantity, with one participant saying, “It is hard to find unbiased information on services— there is so much advertising and it’s hard to get real information” (33).
Participants needed to know what their plans meant in practice (37) and were often confused about what was approved, what they could do and “how long the money will last” (56). One First Peoples woman pointed out that there are not any “real stories” helping people to “make [NDIS plans] work better once [they] get it” (90). Participants needed case studies and examples to help them see the possibilities. Some participants had very specific queries but no-one to provide answers with any certainty. For instance, a First Peoples man wanted
NDIS Plan Utilisation in Queensland 34
someone to “explain in Islander sign language” if he could use his plan when he went home to Thursday Island, and what that would look like (83). One participant wanted “a glossary index for each of the different funding supports” in people’s plans to explain what they can spend their funding on:
For example, under core support […] you can spend your core funding on support workers, funding […] in this section can be used to pay for travel. It needs to be expressed in simple language that we understand […] so when we work out what [help] we need, it’s easier […] to know what funding we need. (29)
This suggests a potential enabler around developing clear and accessible resources to explain what is possible in people’s NDIS plans, what their plans mean in practice, what they can spend their funds on, and how long their funds will last (including examples and case studies).
Enabler: Advocacy and support organisations that help people to develop and understand their NDIS plans, particularly in First Peoples communities
In some First Peoples communities, this explanation of “what’s what and how to get the best out of their plan” was provided by “intermediaries” [advocacy and support organisations that support participants] (4). “This works well whilst there are committed individuals providing that support, but if someone good moves on, the whole thing grinds to a halt” (4).
Being able to access advocacy and support organisations to explain how to make the most of their plans was an enabler, particularly in some First Peoples communities. A potential enabler could include training, assisting and funding advocacy and support organisations to help people develop and understand their NDIS plans.
Barrier: NDIS plans are often rushed, recycled, inadequate and unfit for purpose
Participants regularly described their NDIS plans as being “rubber stamped” (56), “recycled” (23), and “unfit for purpose” (4). One participant left her first planning session feeling “ignored and powerless to the hilt;” “like [her planner] did not want to see [her]” (56). It was “like the planner already had the plan written and […] was just rubber stamping it,” which was “almost confirmed” when it “was approved that very afternoon” (56). In another case, a child was given “a recycled old plan” that mentioned his father (without recognising that he had since died) and listed a medication no longer required (23). A service provider who had worked at the NDIA gave more insights on “poor quality plans”:
The participants that do get a plan are […] given plans that are inadequate and unfit for purpose. Some of the plans received recently are appalling. I know through the grapevine that this is occurring in other communities. (4)
Based on the above, a potential enabler would be to tailor NDIS plans to each person’s needs and ensure that they account for any changes in circumstances and treatments.
Barrier: Insufficient funding in NDIS plans
Insufficient funding was a barrier encountered by NDIS participants in their plans, either because they did not secure enough funding in the first place, or their funding was reduced. If insufficient services were funded, then the benefit was not realised, and other negative impacts were evident. A non-binary participant in a remote town described this problem:
I spent all of my savings on physiotherapy. It has left me with no funds and completely dependent on my parents, and I was not able to access any support work at all. It affected my education and university - I no longer study now, as a
NDIS Plan Utilisation in Queensland 35
result. I still cannot access enough psychology appointments which is a constant battle with my mental health. (44)
A First Peoples’ woman who lived in the same remote town said that “the NDIS was [initially] really beneficial […] in the physical and social, employment and functional aspects.” However, the gains made during [her] first plan were lost when her funding was cut when her plan was reviewed. She had gained and retained useful employment, and undertaken training to start a microbusiness, but has now fallen backwards in those areas (20).
I believe that the LAC/NDIS did not really read the reports as the next [current] plan cut the funding by more than half with adverse results. That is, the Plan is not
effective at meeting my needs. Just when I was seeing real progress in
employment and business training and gaining confidence and control of my emotions in social situations thanks to mentoring by my support workers, these hours were cut back. Although I tried to manage, I slid backward in those areas and every failure sent me faster downhill. The employment and business came to a standstill. I am so mad with myself as I was doing so well on the previous plan, and at that time could see my way clear to be able, within a couple of years, to manage my business as a self-sufficient person without needing the help of a support worker and having a longer-term goal of providing mentoring for others to do the same. (20)
Other participants were also disadvantaged by seemingly arbitrary funding cuts. The mother whose son received a ‘recycled’ plan said it “was at a reduced value than the previous plan, despite us demonstrating his need for increased supports with written reports” (23). Another participant pointed out that:
[The] NDIA likes to think they [are] investing in us NDIS participants in [the] hopes we will eventually get off the scheme, find work and pay back the federal government in taxes. How are we to do that when our plans are constantly being reduced and cut? (29)
Participants discussed the need for more funding for rural and remote areas to benefit from the overall funding. One participant said:
NDIS staff are not willing or eager to help people in remote areas as they do not understand the need and presume that remote is the same as regional and are all under one category, and that costs are sometimes greater than regional due to travel expenses being added onto Therapists prices. Transport costs are a big factor out here, clients get the transport costs, but these are not being passed on [to] providers if they do not know how to access this within the NDIS service, this can be an added stress. (18)
A First Peoples woman living in a different rural area drew attention to “poorly funded plans compared to regional and city areas” (37). She went on to say, “I am also a NDIS Support Coordinator, so I know this” (37).
Based on the above, a potential enabler could be ensuring that NDIS participants receive sufficient funds to meet their needs, and that this is not reduced in subsequent plans.
4.5 Challenge: Utilisation of NDIS plans and funds
Participants who had received NDIS plans and accessed services, still struggled to utilise their funds. They discussed a range of issues that influenced their challenges with plan utilisation,
NDIS Plan Utilisation in Queensland 36
most of which involved a lack of local services and skills, but also the experience of discrimination and attitudinal barriers. They called for greater scrutiny of complaints, local flexibility to respond to rural/remote and cultural issues, and parent/carer support to enable more self-determination. Some also shared NDIS successes and recommended that these were shared locally to increase enthusiasm for the scheme.
4.5.1 Enhance service delivery and complaints systems
Barrier: Lack of NDIS services in regional, rural and remote locations
NDIS service providers were scarce in most regional, rural, and remote locations (7, 8 23, 35, 37, 38, 44, 45, 47, 52 and 53). Even in larger regional towns, such as Toowoomba and Gladstone, accessing NDIS service providers was not easy. For example, a carer discussed the barriers of “finding a suitable support organisation [and] being able to use all NDIS funding,” as it was “hard to find support staff with the right skill mix” in his regional town (23). A First Peoples’ woman was challenged by the “lack of service providers in rural and remote communities” (37). The services that were particularly hard to access included allied health (35, 53), occupational therapists (38, 45, 47, 52), speech therapists (45), support workers (45, 52), accommodation-based services (7), house maintenance and scooter repairs (38), as well as tradespeople such as electricians and plumbers (47).
Participants provided a range of ideas for improving the quantity and quality of service providers in regional, rural and remote towns. This included funding service providers “to allow them to grow” (37), ensuring that providers received “mandated training before becoming support workers (45), enabling “trainees” to replace support workers when they retired or left the industry, not expecting one worker to do the job of three (52) and better telehealth (52).
A potential enabler could be to ensure that people in regional, rural and remote locations can
access NDIS-funded services including support staff, allied health professionals,
accommodation services, house maintenance, tradespeople and equipment repairs. Based on participant recommendations, another potential enabler could be supporting service providers through base funding to allow them to grow, mandated induction training for support
workers, policies to ensure that support workers are not overloaded with work, and
traineeships to prepare for staff turnover. Another potential enabler would be to improve access to telehealth services.
Barrier: Excessive travel and/or travel-related expenses
Rural and remote communities also struggled with excessive travel and/or travel-related expenses (52). Service workers were often re-directed to regional towns due to staff shortages (52), leaving more remote areas depleted of capability on a regular basis. A service provider said the lack of NDIS-knowledgeable services with capacity to support disability was particularly problematic in discrete Aboriginal communities (8).
A potential enabler could be to minimise travel requirements and expenses.
Barrier: Discrimination, abuse, coercion, poor service and inadequate complaints systems
Although the service system was simply inadequate in some areas, several participants provided disturbing disclosures about discrimination, abuse, coercion and poor service within the NDIS system; and noted that they had been calling for an appropriate NDIS response for some time to no avail. A service provider relayed the following story highlighting the vulnerability of the NDIS system in small regions. Even the ‘rival company’ terminology hints at the nature of the unhelpful competitive environment that participants have to negotiate.
NDIS Plan Utilisation in Queensland 37
Making a complaint against a service resulted in negative ramifications for all participants in the region, but no rectification of the problem:
Very recently a worker left the employ of a support service [in town]. She left because she identified that the support service was not servicing clients in the correct manner, and she went to work for a rival company. Shortly after she left, some participants made a complaint against the manager of the first company, directly to the NDIS commission. The commission commenced investigating. The manager in turn had to leave the company, but not before lodging several complaints to the NDIS fraud team about several participants. The complaints were, by and large, not justified but, without exception, all the participants that had a complaint lodged against them were stripped of their plan management. They were not provided with any opportunity to respond to the complaints and [were] not supplied with any detail around what they had done wrong. […] There does not appear to be a register of people lodging fake/malicious or just spiteful complaints. The manager who made the complaints sought to ensure her former company lost participants and they did. It was at the expense of participants and their right to have choice and control. (5)
Other participants mentioned that “support organisations like to have power over the person and their family” (23), and also referred to the “lack of accountability of service providers” (37), and “lack of action from NDIS for providers who misuse, coerce over and over again, and mismanage and take advantage of participant funding” (18).
First Peoples reported regular instances of poor service, prompting many to opt out of the support they were entitled to though a NDIS plan. One First Peoples woman reported that she did not want to stay in her previous shared house, as “the staff were really lazy” (94). She saw many of the “other girls […] get a bad treatment,” and she “wasn’t safe in that house” (94). She “told the house manager and they told [her] to shut up … that [she was] lucky to have a roof over her head and should be grateful” (94). She also reported that her current group home did not seem to understand why she did not wish to have “men workers doing [her] private stuff.” They also refused to take her to cultural events and activities, which meant she was unable to use a substantial portion of her NDIS funds (94). She had now exhausted all her available options, so had no choice but to remain in that environment. A First Peoples man also experienced harm in a group house in a very remote area where there was no alternative accommodation (87). This man’s mother said that one of the workers repeatedly told him that “he smells, is ugly, dumb and mocks him about his speech when he tries to talk,” but when they reported this behaviour, management “said that’s not good enough reason to make the man lose his job” (87). The implication of these actions is magnified in a small-town environment and can quickly escalate into broader discriminatory behaviour. The participant reported that he now goes “out all day and night” when this worker “comes to work” and does not “come back until he [the worker] is gone” (87). A First Peoples service provider questioned whether disability support staff assume that they do not have to be ‘culturally appropriate’ as “black fullas won’t know any different” (8). With very few sources of public scrutiny in small
towns, behaviours such as these were unlikely to be detected and perhaps remain
unaddressed even if detected to avoid disruption in the town.
Another remote First Peoples NDIS recipient spoke about problematic service experiences that were rectified through community volunteers and independent plan-management. The vulnerability of NDIS recipients to corruption, coercion and continuity challenges in small towns is clear in this story.
I had a brief period of experience of being signed up with an NDIS registered company. The LAC at the time of my initial Plan said that I had to do this. The company claimed at [the] highest hourly rates from my NDIS plan, while paying
NDIS Plan Utilisation in Queensland 38
the support workers they employed at rates equivalent to that of a school-based trainee, and then went ‘belly-up’ overnight, leaving all the NDIS clients in this remote area without support workers. The LAC at the time also went ‘missing in action’ with mental health issues. It was only through community volunteer workers that these clients were kept afloat, and NDIS was approached for new plans for all because the money disappeared too. Then we found out about the choice to be plan managed which was definitely in tune with ‘client choice and control’ as it gave the client the ability to negotiate directly with support workers about hours and hourly rates. Consequently, most NDIS clients out here are plan-managed (20).
Some plan managers and coordinators were not helpful and in a smaller town, choice was often limited. A First Peoples woman described how she was harassed by an organisation that wanted to manage her plan and be her exclusive service provider. The organisation wanted to assume control over all her funds and reduce her eight hours of support time to two hours, because they included costs for a three hour commute each way (89). She said that this agency seemed to be targeting “mob” but not “white folks,” making their “money [run] out in three months,” but with minimal service delivery benefits for the participants (89).
This suggests potential enablers around enhancing the safety, quality and dignity of NDIS services (including cultural safety) and ensuring that NDIS participants are supported to lodge complaints and have them rectified.
Barrier: No system to ensure that NDIS participants are receiving quality care
A remote participant thought that someone should check up on support workers “to make sure they are providing the actual services [as he had] found companies that are not fulfilling their
contract with PWD (people with disability)” (52). Another participant suggested that
participants were particularly vulnerable if they had “no real nominee who cares or is
responsible for them, and public trust is not in play” (18). This risk appeared to be exaggerated in the more isolated communities where unethical behaviour was perhaps slightly less visible.
Based on the above, potential enablers could include developing a system to check on vulnerable and isolated NDIS participants to ensure they are receiving quality care.
Enabler: Good plan management and coordination or support to self-manage
Plan management “by a very supportive and responsive company” enabled one participant to access “local support workers that are culturally sensitive and in tune with [her] needs and goals,” in a way that was not possible when she was “reliant” on NDIA management or local NDIS companies (20). It provided an ethical oversight mechanism that ensured her funds were utilised in ways that benefited her. Other participants also mentioned how helpful independent plan managers and coordinators could be in relation to plan utilisation. For example, one service provider said, “finding support workers was hard initially, but changing plans over to [independent Plan Manager] has solved that issue and is working well” (4). One NDIS recipient spoke about her “excellent plan manager and support coordinator who are there for [her] when problems arise with NDIS” (51). Good, independent plan managers seemed to alleviate the challenges of locating service providers to some extent. One service provider in a remote First Peoples community said, “finding support workers was hard initially but changing plans over to [independent plan management agency] has solved that issue and is working well” (4).
Participants in remote areas noted that self-management could be effective, but required support, training and time to build confidence. The support to self-manage was not available and most participants were self-taught through trial and error:
NDIS Plan Utilisation in Queensland 39
I soon learned to make as many appointments as possible on my support worker days and be okay that there were hours where they weren’t doing much but my
day was so much less stressful because they were with me etc. Gaining
confidence to choose and change to companies who made my life and symptom management easier maybe just because they sent out reminders and I could rely on them etc. Over time I have learned to get the most out of my services in the time I have with them, any if my plans all go to poop, that’s okay too. I try and have a Plan A and a Plan B (50).
Participants also discussed the need for “local, culturally appropriate and face-to-face support coordinators” and “tailored cultural training for planners” (Townsville focus group).
Based on the above, a potential enabler could be supporting NDIS participants who choose to self-manage their plans, including enabling them share their learnings with others. Other potential enablers could be providing local, culturally appropriate planners and coordinators for face-to-face service for First Peoples and ensure that planners receive tailored cultural training.
4.5.2 Increase local flexibility of service delivery
Barrier: Lack of local flexibility of service delivery
Several participants wanted the NDIA to support local flexibility in service delivery, particularly for rural and remote communities and First Peoples. One woman said:
For me, the main challenge is finding appropriate services in this region and having essentially no ‘choice and control’ when faced with the option of a service that doesn’t fully meet my needs or no service at all. My main solution would be that the NDIA recognise that regional areas have challenges relating to the supports they have access to [and] therefore require a degree of flexibility (21).
This participant “was told to get two builders to quote [a home modification] job even though this region only had one registered builder—there was no flexibility” (21). A man found it “hard to find support staff with the right skill mix,” particularly in rural and remote areas where participants are dependent on visiting services. This participant noted that to use visiting services, the NDIS plan must specifically state that type of service as being required. Even if the visiting service could deliver something similar that was required by another participant, the service may not be approved and would be denied (23). Another person was unable to use his plan because his support worker was withdrawn by the service provider to cover staff shortages in the larger town. He also had to travel 800km to access occupational therapy and could only access his psychologist via telephone (52).
Several First Peoples wanted to be supported by other First Peoples. This included the Aboriginal woman who wanted the NDIS to fund her female friends to help her shower and attend cultural events (94), and a Torres Strait Islander man wanted First Peoples to “look after their own”, “do [their] caring and what it means for [them] to get this help” (83). A service provider shared some ideas about how to address local needs while utilising community strengths within First Peoples communities:
The agency’s [NDIA] overly prescriptive approach to ECEI (Early Childhood Early
Intervention) funding prevents the best culturally appropriate supports for
Indigenous kids in remote areas. The agency refuses to put core funding in plans and funds capacity building only, meaning the kids have to see white people they do not know for 30 minutes fortnightly at a rate of approximately $300 p/h + travel
NDIS Plan Utilisation in Queensland 40
costs. [The NDIA] then asks why progress is not being made and kids are exited [from] the scheme having not met any of their developmental milestones. If funding was less prescriptive, we could utilise a number of locals who have certificates in early childhood and could be working on behaviours and other challenges with a local voice, in a culturally appropriate way and for 3 to 4 hours each week [rather than 30 minutes]. We have been lucky to have been able to trial this and the difference [it makes] is astonishing. However, the agency won’t allow it because it doesn’t fit their template. Again, systemic racism! (4).
Participants suggested that it might be helpful to look outside of specific professions, to
consider how other local community services could address people’s needs in more
appropriate ways. This approach could provide more opportunities for employment for First Peoples and rural and remote community members. One idea focused on “more creative pathways for Indigenous people to become NDIS service providers, including unregulated providers, mentors, and the provision of business support (Cairns focus group). This could include enabling people to be supported by friends and family, rather than “being threatened with NDIS action if they continue to use their third-cousin or a community member as a support worker despite having a very clear relationship of trust with the person” (5). This solution might require relaxation of restrictions relating to misdemeanours that prevented many First Peoples from becoming service providers. In one example, friends who offered to help one woman with showers, meals, and activities, “couldn’t get a job with [her]” as they had “been in trouble with the law, and [could not] get the police check they needed” (94).
This suggests a potential enabler around enabling flexible service delivery for rural and remote communities and First Peoples, rather than enforcing procurement rules that don’t recognise the challenges of limited supply. Another potential enabler could be to enable First Peoples and rural and remote communities to propose innovative solutions, without being limited to particular service provider professions or restricted by employment policies that don’t enable First Peoples to be supported by other First Peoples.
Enabler: Being able to choose who to work with
For some participants, the NDIS offered a level of flexibility they had not experienced previously. For instance, one participant said she was “always surprised to find out how many people are not aware of their options and flexibility of choice” (31), and another said he was glad he could choose who he wanted to work with, “as long as they had an ABN (Australian Business Number)” (46). He said there was “no specific registered [service provider] to make furniture or dig holes,” so he was able to “find a willing friend or person to help out” and was “happier to find [his] own [providers] in the country” (46).
Drawing from this finding, a potential enabler could be to ensure that people understand when (and how) they can choose who to work with.
4.5.3 Record, celebrate and learn from successes in local regions
Enabler: Stories on how the NDIS has helped
Some participants described the significant benefits they had received through the NDIS and believed it was important to share successes. For example, a rural participant said:
As a result of now having the NDIS plan, I have been able to get a good wheelchair which improves my independence and my mobility. My lawns are being looked after as I cannot do this now. My new support coordinator has given me increased support when I am home and not in the nursing home. [Agency] transport me,
NDIS Plan Utilisation in Queensland 41
when I need to return to my home, and my ultimate goal is the return to my own home and be independent away from the Nursing Home permanently (22).
A First Peoples man said that the NDIS had been extremely helpful and another enjoyed having access to peer support:
Before NDIS I had people hate me like never give me time. I was home and not get[ting] things from people and never have money for job. It was bad life. My family love me yes. But I was not easy talk to (86).
Oh, I like it there [at service provider]. I see Deaf mob and [am] learning Auslan to help me, and sometimes [they] help me learn computer and mobile. The Deaf men are good men and help me with things like cars and play pool or darts (87).
The latter participant’s support worker had given him a wallet card that said, ‘I am Deaf, I have Mental Health issues, if you find this card please call my support worker – [telephone number].’ “It’s great […] because if something happens and [the] cops try to talk to me, I show them it and they call the worker and they come and get me and I don’t go to jail” (87).
The parent of a First Peoples man in a more remote location said the following:
As [participant’s name] mother, I am very happy he has NDIS support through the carers who go to his place and help him live independently. They have helped [him] with life skills of looking after himself but also cleaning and maintaining his rental unit. They take him out into the community for social support and also take him to any medical appointments. [He] also appreciates the carers going around to support him. Without the NDIS program I would have found it very difficult to look after or care for [my son] (60).
Other positive feedback about the NDIS system included:
- being able to successfully communicate needs and access relevant services (31)
- having access to good reliable support workers who do not cancel shifts (47)
- having a good support coordinator who helps with plan paperwork and finances (52)
- being able to prepare for changes and roll over plans (50). Participants reported significant successes that should be recorded, shared, celebrated, and integrated into future service delivery. They also believed that creative and innovative ways in which people utilised their plans should be shared to spark ideas for other participants and show them what is possible. Participants could also share challenges to determine whether any other participants had potential solutions or could recommend particular services.
As such, a potential enabler could be to record, share and celebrate NDIS successes and integrate key learnings into future service delivery (e.g., opportunities to share creative and innovative ways of using NDIS plans to spark ideas for other participants and share challenges and solutions.
NDIS Plan Utilisation in Queensland 42
- Discussion
5.1 Summary of Queensland NDIS Plan Utilisation Findings
The Queensland participants identified a large number of barriers and only a few enablers (see Table 2). These barriers and enablers were categorised under the four broad themes of approach, access, activation and utilisation.
The most frequently reported barriers were:
-
NDIS information and systems that did not meet the needs of people with disabilities, especially those who had concurrent challenges such as low literacy, no fixed home address or internet/technology problems.
-
NDIS staff who do not understand and appreciate the complex experiences of people with disability, particularly at the interface with gender/sexuality and culture as is experienced in a rural/remote context.
-
Lack of NDIS services in regional, rural and remote locations and First Peoples communities, a challenge more profound than in metropolitan areas.
-
People experienced inconsistency and unfairness from the NDIS workforce, which was exacerbated in rural/remote regions where comparisons and representation or advocacy was more difficult to obtain.
-
NDIS participants do not understand what is possible in their plans, what they mean in practice, what they can spend their funds on, and how long their funds will last and this lack of knowledge is exacerbated in rural/remote areas where comparison and information sharing may be limited.
-
Discrimination, abuse, coercion, poor service and inadequate complaints systems, which were more difficult to address or manage in rural/remote and First Australian communities, particularly when combined with racial discrimination.
-
Lack of local flexibility of service delivery, which was particularly important in small towns with limited services.
The most frequently reported enabler was stories on how NDIS has helped and how other participants have organised their supports and services. The second most frequent enabler was reliable and unbiased trustworthy plan management and service coordination or support to self-manage. Other enablers were also evident in the stories that were shared by participants as shown in the Table below.
NDIS Plan Utilisation in Queensland 43
Table 2: Recommendations, barriers, enablers and potential enablers (detailed recommendations) identified by research participants
Recommendations Barriers Enablers Potential Enablers (Detailed Recommendations)
-
Approach of NDIS staff 1.1 Improve • NDIS staff don’t understand the • Provide staff training in disability, empathy and engagement etc.
understanding of experiences or needs of people with • Ensure that broader organisational approaches are more disability-
disability disability (2nd most frequent barrier) friendly (e.g., employing and learning from people with disabilities)
1.2 Improve • NDIS services are not affordable or • Enhance NDIS staff understanding of rural and remote challenges
appreciation of accessible in rural and remote and needs staff through training and placements
rural/remote life communities • Enhance the affordability and accessibility of services rural/remote
1.3 Enhance respect • First Peoples experience harm from • Employ more First Peoples throughout the NDIS
for First Peoples staff throughout the NDIS system • Provide First Peoples’ specific information sessions
perspectives and (equal 6th) • Enhance the cultural awareness and sensitivity of non-Indigenous
values staff through training and ‘on country’ immersion
1.4 Incorporate • People feel unsafe if their sexuality, • Increase staff awareness of safety requirements relating to sexuality,
sexuality, gender gender or cultural needs are not gender and cultural needs
and other cultural honoured • Increase the diversity of the NDIS workforce (sexuality/culture)
perspectives • Address client safety needs relating to sexuality, gender and culture
1.5 Integrate parent/ • Queensland parents and carers not • Increase staff awareness of parent/carer needs
carer perspectives able to access respite, cleaning, yard • Provide funding for parent / carer respite, cleaning, yard
and enable access maintenance, skill development or maintenance, skill development and other services
to services supports through NDIS (equal 6th)
1.6 Increase fairness, • People experience inconsistency • Establish a learning culture within the NDIS system
consistency, and unfairness from the NDIS • Increase staff understanding of policies and procedures
connectivity and workforce (equal 4th) • Improve links between agencies to streamline process/paperwork
care across the • Enable participants to liaise with same person in informal style NDIS • Ensure that staff treat participants with integrity, dignity and care
- Ensure that all NDIS services are provided in a safe, ethical and caring manner, in line with each person’s needs
-
Access to NDIS system 2.1 Simplify • NDIS information and • Explain the NDIS system in a simple manner (e.g., suitable for
information and communication systems do not meet people with cognitive disabilities or low literacy)
tailor the needs of people with disabilities, • Make it easy to fill out forms
communication to especially those with concurrent • Ask people how they would like to receive NDIS information and
address participant challenges such as low literacy, no communication and address these expressed needs
needs fixed home address or • Link people to NDIS peer support groups and agencies
internet/technology problems (1st)
NDIS Plan Utilisation in Queensland 44
Recommendations Barriers Enablers Potential Enablers (Detailed Recommendations)
2.2 Streamline • The NDIS system and its demands • Eliminate the need to evidence significant, permanent disabilities
validation and for repetitive processes and reviews more than once
review is overwhelming, expensive and • Extend plans and funding to last for several years, unless there are
requirements difficult to manage (equal 6th) changes in circumstances, effectiveness or treatments
-
NDIA staff seem to dismiss, ignore • Ensure that NDIA staff acknowledge the expertise of health or disregard professional reports professionals by accepting their reports and evidence
-
Medical/health professionals • Provide regional, rural and remote health professionals with training impeding people’s ability to obtain on NDIS, its benefits, and how to assist clients to receive support relevant useful reports
2.3 Improve the speed • Approvals for NDIS applications and • Plan, implement and evaluate strategies to improve the speed and
and accuracy of supports take too long (equal 6th) accuracy of NDIS decisions and communication
decisions and • Communication about decisions is communication not clear accurate, or timely
-
Activation of NDIS plans 3.1 Improve plan • Inexperienced, unethical, unsafe or • Ability to • Develop processes to better recruit, train, connect, support and
quality to address continually changing planners and access mentor planners and coordinators, in partnership with experienced
participant needs coordinators helpful, and effective staff across the state
• Physical disabilities discounted as experienced • Enable people to access planners and coordinators outside their
medical concerns, making it hard to planners regions, if required/requested
access health services, equipment, from other • Ensure that people are supported for physical disabilities, including
home modifications and community areas health services, equipment, home modifications and community
capacity building • Advocacy capacity building
• NDIS participants do not understand and support • Develop clear and accessible resources to explain what is possible
what is possible in their plans, what organisations in people’s NDIS plans, what their plans mean in practice, what they
they mean in practice, what they can that help can spend their funds on, and how long their funds will last (including
spend their funds on, and how long people to examples and case studies)
their funds will last (equal 4th) develop and • Train, assist and fund advocacy and support organisations to help
• NDIS plans are often rushed, understand people develop and understand their NDIS plans
recycled, inadequate and unfit for NDIS plans, • Tailor NDIS plans to each person’s needs and ensure that they
purpose particularly in account for any changes in circumstances or treatments
• Insufficient funding in NDIS plans (or First Peoples • Ensure that NDIS participants receive sufficient funds to meet their
perceptions of insufficient funds) communities needs, and that this is not reduced in subsequent plans.
-
Utilisation of NDIS plans and funds 4.1 Enhance service • Lack of NDIS services in regional, • Good plan • Ensure that people in regional, rural and remote locations can
delivery and rural and remote locations (3rd) management access NDIS-funded services including support staff, allied health
complaints • Excessive travel and/or travel-related and professionals, accommodation services, house maintenance,
systems expenses coordination tradespeople and equipment repairs
NDIS Plan Utilisation in Queensland 45
Recommendations Barriers Enablers Potential Enablers (Detailed Recommendations)
• Discrimination, abuse, coercion, poor or support to • Support service providers through base funding that allows them to
service and inadequate complaints self-manage grow, mandated induction training for support workers, policies to
systems (equal 4th) (2nd most ensure that support workers are not overloaded with work, and
• No system to ensure that NDIS frequent traineeships to prepare for staff turnover
participants are receiving quality enabler) • Improve access to telehealth services
care • Minimise travel requirements and expenses
-
Enhance the safety, quality and dignity of NDIS services (including cultural safety)
-
Ensure NDIS participants are supported to lodge complaints and have them rectified
-
Develop a system to check on vulnerable and isolated NDIS participants to ensure they are receiving quality care
-
Support NDIS participants who choose to self-manage their plans, including enabling them to share their learnings with others
-
Provide local, culturally appropriate planners and coordinators for face-to-face service for First Peoples
-
Ensure planners receive tailored cultural training 4.2 Increase local • Lack of local flexibility of service • Being able to • Enable flexible service delivery for rural and remote communities and
flexibility of service delivery (5th) choose who First Peoples, rather than enforcing procurement rules that don’t
delivery to work with recognise the challenges of limited supply
-
Enable First Peoples and rural and remote communities to propose innovative solutions, without being limited to particular service provider professions or restricted by employment policies that don’t enable First Peoples to be supported by other First Peoples
-
Ensure people understand their capacity to choose when (who and how) their plans work
4.4 Record, celebrate • Stories about • Record, share and celebrate NDIS successes and integrate key
and learn from how NDIS learnings into future service delivery (e.g., opportunities to share
successes in local has helped creative and innovative ways of using NDIS plans to spark ideas for
regions or could help other participants and share challenges and solutions)
(1st)
NDIS Plan Utilisation in Queensland 46
5.2 Comparison of Queensland Findings to National Findings
There were many similarities between the Queensland and national NDIS plan utilisation research findings. They both identified more barriers than enablers, particularly in relation to NDIS processes, planning and coordination support, access to services and service delivery— particularly for First Peoples. Moskos and colleagues’ (2021) emphasised the strengths and limitations of NDIS participants themselves and their parents/carers. Strengths included participant’s knowledge, understanding, effort and perseverance, whereas limitations related to pressing personal, financial and health issues that deprioritised the importance of arranging and access disability supports (Moskos et al., 2021). The findings of this study focused more on the strengths and limitations of the broader NDIS system as a whole, particularly the overall approach adopted by NDIS staff throughout the entire NDIS system (i.e., NDIA officials through to support workers at the interface). Study participants expressed their frustration with a system that did not seem to understand and appreciate their experiences and needs; instead adopting a top-down approach that relied on an unhelpful user interface.
5.2.1 Comparison of Barriers
Both studies demonstrated a clear disconnect between what the NDIS was designed to achieve (helping people with severe, permanent disabilities access quality services) and the experiences of NDIS participants. NDIS participants, at both a state and national level, found the NDIS system confusing, difficult to navigate, insufficient for their needs and often harmful. A large number of barriers were identified in both studies, including challenges relating to difficult processes, not knowing how to develop and implement plans, poor (or absent) planning or coordination support, lengthy approval times, not enough (or poor) services, service delivery that did not meet the needs of (or actively harmed) First Peoples, and concerns about prices.
The Queensland study identified some unique barriers that were not identified in the national study. These barriers generally reflected a clash between the methods of the NDIS and the characteristics of non-metropolitan communities, particularly those with strong cultural ways of being. In Queensland, the approach of the NDIS was the most significant barrier in rural/remote and First Peoples communities (i.e., not understanding or addressing needs that arose due to the complex intersections between disability, culture, gender/sexuality as they manifested in the rural/remote context). The NDIS was also perceived as being inconsistent and unfair as well as not communicating in a clear and timely manner (which may reflect ad hoc decision-making and challenges associated with the idiosyncratic nature of rural/remote communities). Participants also complained about having no system to ensure they were receiving quality care, which was particularly necessary in the rural/regional context where choice was limited. They criticised the fact that plans were often inappropriate and did not match the needs of rural/remote and First Peoples residents. There was not enough local flexibility, and not enough support for Queensland parents and carers. In rural/remote and First Peoples areas, participants commonly reported that medical and health professionals impeded people’s ability to obtain useful NDIS reports and did not appreciate the needs of the NDIS. However, when they did take the time and expense to gather medical reports for NDIS, they frequently reported that NDIS staff would ignore or discount those reports.
The national study identified a few barriers that were not observed in the Queensland data, particularly personal issues that deprioritised the importance of NDIS supports, difficulties with NDIS-funded appointments, My Place challenges, and poor interface between the NDIS and
mainstream services. The absence of these barriers perhaps reflected the fact that
participants in rural/remote and First Peoples communities faced more challenges overall in accessing services in the first place and in receiving services that supported them in positive ways.
NDIS Plan Utilisation in Queensland 47
Table 3 describes the barriers identified in this Queensland study, in order of frequency, compared to the barriers identified in Moskos and colleagues’ (2021) national study.
Table 3: Comparison of barriers in order of Queensland frequency
Queensland Barrier Related National Barrier
-
NDIS information and systems do not meet the needs of people with disabilities, especially those with concurrent challenges such as low literacy, no fixed home address or internet/ technology problems
-
NDIS staff don’t understand the experiences of people with disability
- Lack of NDIS services in regional, rural and Insufficient availability of disability supports and
remote locations services, including lengthy wait times and limited choice / control over participant supports
-
People experience inconsistency and unfairness from the NDIS workforce
- NDIS participants do not understand what is Difficulty understanding NDIS processes and
possible in their plans, what they mean in how to implement plans practice, what they can spend their funds on, and how long their funds will last
6. Discrimination, abuse, coercion, poor Difficulties with provider organisations due to
service and inadequate complaints systems problems with service quality, organisation, staffing arrangements, payment issues and workers lacking the attitude, experience and skills to provide quality care
- Lack of local flexibility of service delivery 8. First Peoples experience harm from staff Reluctance to accept disability services due to
throughout the NDIS system service providers’ inability to accommodate (or disregard for) requests steeped in participants’ personal and cultural disposition
-
Queensland parents and carers are not able to access respite, cleaning, yard maintenance, skill development or other supports through NDIS
-
The NDIS system and its demands for NDIS planning and approval processes being repetitive processes and reviews is too complex and time consuming, and ongoing overwhelming, expensive and difficult to uncertainty around the types of eligible supports manage
-
Approvals for NDIS applications and NDIS planning and approval processes being supports take too long too complex and time consuming, and ongoing uncertainty around the types of eligible supports (as above)
-
Insufficient funding in NDIS plans
-
NDIS services are not affordable or Concerns about service provider prices, accessible in rural and remote communities including NDIS participants being charged more for allied health services and group activities than non-NDIS clients
-
People feel unsafe if their sexuality, gender or cultural needs are not honoured
NDIS Plan Utilisation in Queensland 48
Queensland Barrier Related National Barrier
-
Medical and other health professionals impeding people’s ability to obtain relevant and useful NDIS reports
-
Physical disabilities discounted as medical concerns, making it hard to access health services, equipment, home modifications and community capacity building
-
NDIA staff seem to dismiss, ignore or disregard professional reports
-
NDIS communication about decisions is not accurate, timely or clear
-
Inexperienced, unethical or continually Not knowing about (or able to access) support changing planners or coordinators coordination, not receiving enough coordination funding, or coordination being poor quality and/or time limited
-
NDIS plans are often rushed, recycled, inadequate and unfit for purpose
-
Excessive travel and/or travel-related expenses
-
No system to ensure that NDIS participants are receiving quality care
5.2.2 Comparison of Enablers
Both studies found far fewer enablers than barriers. Good plan management and coordination was the only enabler identified in both the Queensland and national study. Other enablers identified in the Queensland study (but not the national one) included stories on how NDIS has helped, having choices about who to work with, and the ability to access planners from other areas and/or support agencies to help people develop and understand their plan
(particularly for First Peoples). The availability of local disability services or other
arrangements that enhanced access to service providers was mentioned in both studies.
The enablers identified in the national study but not in Queensland focused on the knowledge, effort and perseverance of NDIS participants, family members and carers; support from disability provider workers and organisations. Person-centred support, care and capacity building is the common thread in each of these enablers. In the Queensland study, these enablers were implicit in the stories provided by participants, but the focus was more on the
negative behaviours of support workers (including racism) that detracted from quality
experiences.
Queensland enablers not identified in the National study
These enablers were identified in the Queensland study, but not the national one:
- Stories on how NDIS has helped
- Being able to choose who to work with
- Ability to access helpful, experienced planners from other areas
- Advocacy and support organisations that help people to develop and understand their NDIS plans, particularly in First Peoples communities
NDIS Plan Utilisation in Queensland 49
National enablers not identified in the Queensland study
These enablers were identified specifically in the national study, but were implied in stories presented by participants in the Queensland study:
-
Knowledge and understanding of the NDIS, disability sector and the type of services that could be accessed through the NDIS
-
The effort and perseverance NDIS participants, family members and carers expended to ensure they obtained required funding and services
-
Support from disability provider workers and organisations, including coordinating and arranging personalised supports or recommending alternative providers
Table 4 describes the enablers identified in this Queensland study, in order of frequency, and compared to related barriers identified in Moskos and colleagues’ (2021) national study. This is followed by lists of enablers identified in the Queensland study but not the national one, and those identified in the national study but not the Queensland study.
Table 4: Comparison of Enablers in Order of Frequency
Queensland Enabler (in order of frequency) Related National Enabler
-
Stories on how NDIS has helped and can help including how to organise and manage plans
- Good plan management and coordination or Access to funded support coordination to
support to self-manage recommend services, connect participants to service providers, organise supports and arrange invoice payments
-
Being able to choose who to work with, given the limited number of services and options in rural/remote and First Peoples communities
-
Ability to access helpful, experienced planners from other areas or neighbouring communities
-
Advocacy and support organisations that help people to develop and understand their NDIS plans, particularly in First Peoples communities
5.3 Recommendations
Participants provided a range of recommendations for improving plan activation and utilisation, access to NDIS and experiences of the system. At the broadest level, these recommendations pertained to the way in which the NDIS approach to participants needed to shift from an insurance framework to a human rights framework that emphasises an investment in people rather than a punitive monitoring scheme. Participants believed the system should be based on thorough understanding of and attention to the unique needs created by combinations of disability, location, culture, gender/sexuality, parent/carers involvement and broader issues such as poverty and literacy. The goal of the system should be creating user-friendly interfaces at every stage of the process (i.e., access, activation and utilisation). This type of shift is significant and fundamental to the acceptability of the scheme and, therefore, its utilisation. Some recommendations involved minor changes that could be easily implemented but others involved complicated changes that may affect different groups with vested interest.
NDIS Plan Utilisation in Queensland 50
Several recommendations made by the participants have already been promoted and accepted by the Queensland Government following the Queensland Productivity Commission
(QPC, 2021) report on the Inquiry into the NDIS market in Queensland. The QPC
recommendations closely aligned to suggestions made by NDIS participants and
acknowledged that to improve participation rates, the system will have to develop strategies to address supply gaps in the market, support NDIS applications and provide ongoing plan support, as well as making the system less complex. The same requirements were expressed by most participants in rural/remote and First Australian communities. We also found that participants would like a larger range of trades and health workers to be added to the list of providers but were less likely to recommend deregulation of the industry to encourage new providers. Indeed, they were concerned about the inability of the system to ensure fairness, integrity and transparency if deregulated. Whereas the inquiry focused on the development of digital marketplaces to provide better information and support, our Queensland participants identified an equally important need for a consistent, empathic and human-based information interface that could be trusted.
Moskos and colleagues (2021) provided 10 recommendations:
-
Enhanced information from the NDIA
-
Improved communication with the NDIA
-
More appropriate allocation of NDIS funding
-
Greater flexibility of NDIS funding
-
Improved access to disability services
-
A skilled disability workforce
-
Greater access to support coordination
-
Improved quality of disability services
-
Enhanced coordination between the NDIS and mainstream sectors
-
Better recognition and support of the cultural needs of Indigenous participants (p. 11). The current study has revealed many of the same challenges and solutions as these other studies but has provided further depth in terms of practical solutions as recommended directly
by participants (see Table 5 for proposed Priority Recommendations and Table 6 for
Recommendations Provided by Participants). More importantly, the Queensland study
identified that the NDIS system needs to be revised, to more deeply embed an understanding and appreciation of the needs and experiences of NDIS applicants, clients and parents/carers.
In summary, this study has identified the priority challenges, some of which are specific to Queensland and others that reflect experiences across the country. Potential solutions to these priority challenges have been identified, many of which may apply beyond Queensland (see Table 5). Rural/remote and First Peoples participants in Queensland provided many specific recommendations which we have reproduced verbatim in Table 6. The feasibility of these recommendations has not been examined further, but overall they suggest a need for Queensland investment in:
- Supporting changes to workforce composition and recruitment for diversity
- Workforce training and development in managing complexity with respect
- Supporting local exposure to and management of quality standards and safety
- Promoting local improvement processes, particularly where provider choice is limited
- Building local capacity in both participants and services
- Providing multiple forms of information to support good practice and ideas generation
- Clarifying interfaces between NDIS and other services in local communities
- Clarifying roles for family and community members rather than excluding them
- Building a non-punitive conversational approach to decision-making about plans/funds
- Supporting a regular data collection about NDIS experiences to support improvement
NDIS Plan Utilisation in Queensland 51
Table 5: Recommendations to Address Approach, Access, Activation and Utilisation Challenges in Queensland
Recommendations Detailed Recommendations
-
Approach of NDIS staff 1.1 Improve understanding of 1. Provide staff training in disability, empathy and engagement etc.
disability perspective 2. Ensure that broader organisational approaches are more disability-friendly (e.g., employing and learning from people
with disabilities)
1.2 Improve appreciation of 3. Enhance NDIS staff understanding of rural and remote challenges and needs staff through training and placements
rural and remote 4. Enhance the affordability and accessibility of services in rural and remote communities
perspectives
1.3 Enhance respect for First 5. Employ more First Peoples throughout the NDIS
Peoples perspectives and 6. Provide First Peoples’ specific information sessions
values 7. Enhance the cultural awareness and sensitivity of non-Indigenous staff through training and ‘on country’ immersion
1.4 Incorporate sexuality, 8. Increase staff awareness of safety requirements relating to sexuality, gender and cultural needs
gender and other cultural 9. Increase the diversity of the NDIS workforce in relation to sexuality, gender and culture
perspectives 10. Address client safety needs relating to sexuality, gender and culture
1.5 Integrate parent/carer 11. Increase staff awareness of parent / carer needs
perspectives and enable 12. Provide funding for parent / carer respite, cleaning, yard maintenance, skill development and other services
access to services
1.6 Increase fairness, 13. Establish a learning culture within the NDIS system
consistency, connectivity 14. Increase staff understanding of policies and procedures
and care across the NDIS 15. Enhance linkages between agencies and streamline processes and paperwork
16. Enable participants to liaise with the same person in a conversational style 17. Ensure that staff treat participants with integrity, dignity and care 18. Ensure that all NDIS services are provided in a safe, ethical and caring manner, in line with each person’s needs 2. Access to NDIS system 2.1 Simplify information and 19. Explain the NDIS system in a simple manner (e.g., suitable for people with cognitive disabilities or low literacy)
tailor communication to 20. Make it easy to fill out forms
address participant needs 21. Ask people how they would like to receive NDIS information and communication and address these expressed needs
22. Link people to NDIS peer support groups and agencies 2.2 Streamline validation and 23. Eliminate the need to evidence significant, permanent disabilities more than once
review requirements 24. Extend plans and funding to last for several years, unless there are changes in circumstances, effectiveness or
treatments
- Ensure that NDIA staff acknowledge the expertise of health professionals by accepting their reports and evidence
- Provide regional, rural and remote health professionals with training on the NDIS, its benefits, and how to assist their clients to receive support
2.3 Improve speed/accuracy of 27. Plan, implement and evaluate strategies to improve the speed and accuracy of NDIS decisions and communication
decisions/communication
NDIS Plan Utilisation in Queensland 52
Recommendations Detailed Recommendations
- Activation of NDIS plans 3.1 Improve plan quality to 28. Develop processes to better recruit, train, connect, support and mentor planners and coordinators, in partnership with
address participant needs experienced and effective staff across the state
-
Enable people to access planners and coordinators outside their regions, if required/requested
-
Ensure that people are supported for physical disabilities, including health services, equipment, home modifications and community capacity building
-
Develop clear and accessible resources to explain what is possible in people’s NDIS plans, what their plans mean in practice, what they can spend their funds on, and how long their funds will last (including examples and case studies)
-
Train, assist and fund advocacy and support organisations to help people develop and understand their NDIS plans
-
Tailor NDIS plans to each person’s needs and ensure that they account for any changes in circumstances or treatments
-
Ensure that NDIS participants receive sufficient funds to meet their needs, and that this is not reduced in subsequent plans.
-
Utilisation of NDIS plans and funds 4.1 Enhance service delivery 35. Ensure that people in regional, rural and remote locations can access NDIS-funded services including support staff,
and complaints systems allied health professionals, accommodation services, house maintenance, tradespeople and equipment repairs
-
Support service providers through base funding that allows them to grow, mandated induction training for support workers, policies to ensure that support workers are not overloaded with work, and traineeships to prepare for staff turnover
-
Improve access to telehealth services
-
Minimise travel requirements and expenses
-
Enhance the safety, quality and dignity of NDIS services (including cultural safety)
-
Ensure that NDIS participants are supported to lodge complaints and have them rectified
-
Develop a system to check on vulnerable and isolated NDIS participants to ensure they are receiving quality care
-
Support NDIS participants who choose to self-manage their plans, including enabling them to share their learnings with others
-
Provide local, culturally appropriate planners and coordinators for face-to-face service for First Peoples
-
Ensure that planners receive tailored cultural training 4.2 Increase local flexibility of 45. Enable flexible service delivery for rural and remote communities and First Peoples, rather than enforcing
service delivery procurement rules that don’t recognise the challenges of limited supply
-
Enable First Peoples and rural and remote communities to propose innovative solutions, without being limited to particular service provider professions or restricted by employment policies that don’t enable First Peoples to be supported by other First Peoples
-
ensure that people understand when (and how) they can choose who to work with 4.3 Record, celebrate and 48. Record, share and celebrate NDIS successes and integrate key learnings into future service delivery (e.g.,
learn from successes in opportunities to share creative and innovative ways of using NDIS plans to spark ideas for other participants and local regions share challenges and solutions)
NDIS Plan Utilisation in Queensland 53
Table 6
Verbatim Recommendations submitted by Queensland Participants
- NDIS approach
Theme Suggestions
1.1 Workforce 1.1.1: Ensure representation of diverse groups within the NDIA staffing structure, leadership, and governance entities, as well as composition throughout the NDIS system. 1.1.2: Examine ways in which local First Peoples can be employed to provide supports in mutually beneficial ways. 1.1.3: Develop talent acquisition strategies across NDIA and the NDIS system more generally to ensure greater representation of people with disability and parents/carers from rural and remote areas and First Peoples. 1.1.4: Build in incentives to retain staff in rural and remote areas and support longevity of relationships between participants and NDIS workers. 1.1.5: Build on campaigns that facilitate employment in the disability sector and incentivise location of employment in rural and remote regions. 1.1.6: Promote disability training and employment among First Peoples communities. 1.2 Quality 1.2.1: Establish baseline standards about how to conduct respectful and accessible remote interactions (e.g., online, telephone or other standards form of telehealth). 1.2.2: Establish clear requirements for all staff across the NDIS system to ensure minimum standards of respect and accessibility in all interactions. 1.2.3: Adopt a level 1 readability standard and plain English versions with pictorial guides for all documents within the NDIS system. 1.2.4: Explore the use of accessibility technology and supports and establish baseline acceptable levels of accessibility. 1.2.5: Develop a manual for supporting accessibility strategies for each stage of the NDIS journey. 1.3 Workforce 1.3.1: Produce resources that illustrate the nuances of living in regional, rural, and remote Queensland for NDIA agents and partners to training enable them to appreciate the complexities. 1.3.2: Develop a knowledgeable and ethical workforce across the entire NDIS system, capable of operating in the complex and nuanced circumstances created by regional, rural, and remote residence. 1.3.3: Ensure that NDIS workforce is regularly made aware of the negative impact of discrimination, judgement, exclusion, and lack of consultation and how to address these complex concepts in practice. 1.3.4: Provide training in co-design and consultation processes for First Peoples and people with disability more generally to ensure a baseline level of engagement within the NDIS system. 1.3.5: Enact mandatory baseline training required to join the NDIS workforce. 1.3.6: Ensure mandatory knowledge about First Peoples cultural requirements and how they interface with disability.
NDIS Plan Utilisation in Queensland 54
Theme Suggestions
1.3.7: Provide all NDIS staff across the system with basic information about particular conditions such as deafness, and those that can fluctuate over time and across different environments, to inform eligibility determinations, plan development and renewals of plans. 1.3.8: Establish requirements for support workers to demonstrate capability in terms of understanding the implications of sexuality and gender preferences on disability service provision. 1.3.9: Establish mandatory rural/remote and First Peoples exchanges for short periods to expose NDIS staff across the system to new experiences. 1.4 Continuous 1.4.1: Create a two-way flow of education and information about experiences of NDIS participants to ensure it is deliberately informing improvement policy and is being translated into procedures and practices and evaluated through ongoing feedback loops. systems 1.4.2: Develop a user experience service within NDIS system to develop continual improvement cycles driven by people with disability in rural/remote and First Peoples communities. 1.4.3: Develop responsible databases that can enable rural and remote and First Peoples experiences to inform new practices and practice improvement. 1.4.4: Investigate the systematic empathy of the entire NDIS system from NDIA policy through to its implementation by support workers on the ground. 1.4.5: Engage with family members and carers to co-design ways in which Queensland carers can be supported to assist in meeting the needs of the person with disability. 1.4.6: Instigate a trusted non-government platform for sharing stories that will highlight abuse and neglect, but also successes and good practices. 1.5 NDIS user 1.5.1: Develop a clear visuo-spatial representation of the NDIS system with simple terminology and clear descriptions of where, how, interface and when participants should enter, engage, and interact with its various components. 1.5.2: Establish some continuity in the connection participants have with the NDIS system to enable easy a trusted provision of information, advocacy, and support to negotiate the complexity. 1.6 Local NDIS 1.6.1: Ensure that all rural and remote towns are encouraged and supported to develop a central repository and source of local knowledge knowledge about the NDIS. management 1.6.2: Give preference and incentive to consistency at the interface with NDIS participants through the appointment of appropriate and liaison staff who can bridge the gap between community and NDIA. coordination 1.6.3: Facilitate local towns and regions and First Peoples communities (via Local Government and Elders Councils) to co-produce simple ‘cheat sheets’ for potential NDIS participants. 1.7 Whole 1.7.1: Identify ways in which information can be shared with privacy and security to minimise the need for participants to repeat their system, details. joined up 1.7.2: Remove reliance on medical reports and develop methods that enable day-to-day needs to be identified by people with disability ways of and their family members supported by advocates or, if this is not possible, provide materials for medical and health professionals working to emphasise the importance of their role in determination of NDIS supports.
NDIS Plan Utilisation in Queensland 55
Theme Suggestions
1.8 Safety and 1.8.1: Distribute representatives of the Quality and Safeguards Commission throughout the State to increase visibility and accessibility. accountability 1.8.2: Take a more proactive approach to identifying and negotiating complaints so the process is less daunting for participants. culture 1.8.3: Prosecute instances of cultural discrimination at the level of the organisation to ensure they are obligated to address cultural transgressions. 1.8.4: Enact “Whistle Blower” rules to ensure NDIS complainants can remain anonymous and be unaffected by any consequences of making a complaint. 1.8.5: Educate participants about the role of the Quality and Safeguards Commission and how to engage that organisation. 1.8.6: Identify algorithms and a trigger system for identifying those most at risk of abuse or neglect (i.e., those without family advocates, those where choice of accommodation providers do not exist etc.) to inform regular safety reviews. 1.8.7: Develop culturally appropriate and accessible ways of monitoring the safety of participants, bearing in mind the reluctance of some First Peoples and rural and remote residents to discuss potential violations of safety.
- Accessing the NDIS
Theme Suggestions
2.1 NDIS 2.1.1: Recognise the interconnectedness of all conditions that affect people’s health or functional ability rather than only focusing on eligibility permanent disability to the exclusion of other conditions that affect the manifestation of disability. guidelines 2.2 Strengths and 2.2.1: Reorient the assessment process to a priority focus on identifying strengths and opportunities in regional, rural, and remote opportunity communities. perspective
- Activating NDIS plans
Theme Suggestions
3.1 Plan 3.1.1: Provide clear information (examples and perhaps a ‘glossary’) about what can be funded under each category of an NDIS plan. information 3.1.2: Within the constraints of privacy, share a repository of anonymised typical plans so participants can see what is possible in rural remote areas and for First Peoples.
NDIS Plan Utilisation in Queensland 56
Theme Suggestions
3.2 Plan support 3.2.1: Provide additional support and monitoring for those negotiating their first plan in the NDIS system and those who have been unsuccessful or are at risk of being unsupported in their community (e.g., those with additional needs beyond disability or social vulnerability). 3.2.2: Provide access to an independent financial auditor to work with participants to examine the financial viability of NDIS plans and proposed expenditure, identify more economical methods of delivery in rural/remote regions and ensure legitimate expenditure by providers. 3.2.3: Allow participants to explore ‘what if’ scenarios without prejudice, so they can make informed decisions about how to utilise their plan funding. 3.3 Plan quality 3.3.1: Recognise the need for complete and comprehensive plans where all components required for a total solution are available and accessible. 3.3.2: Identify and describe roles for family and carers in NDIS plans, particularly where service providers are limited, and include respite or other in-home support to allow family members to undertake those important roles. 3.3.3: Review the relative size of plans across metropolitan, regional, rural/remote areas and inform future plan development. 3.3.4: Instigate a process of conducting random checks on plan quality to ensure relevance and personalisation of plans. 3.4 Plan review 3.4.1: Review and renewal of plans should be a thoroughly and mutually developed process that does not jeopardise progress or leave gains in an unsustainable state. 3.4.2: Remove the requirement to provide medical or specialist evidence of ongoing disability in relation to permanent conditions. 3.4.3: Ensure that changes in circumstances can trigger reviews in a timely manner to ensure sufficient time to reorganise regional, rural remote or First Peoples services to support increasing needs. 3.4.4: Ensure that supports and services that improve functioning and independence for people with disability are not removed without adequate replacements or that the impact of removal is monitored and reviewed. 3.4.5: Remove disincentives to succeed for people with disability caused by the risk of losing essential services.
- Utilising NDIS plans and funds
Theme Suggestions
4.1 Local service 4.1.1: Identify regions where choice of providers is limited and develop localised strategies to increase capacity. delivery 4.1.2: Where service provider choice is limited, identify advocates who can monitor participants. coordination 4.1.3: Support First Peoples and rural/remote residents to establish small businesses that specialise in delivering services to people with disability. 4.1.4: Explore the possibility of coordination of services in areas where providers were limited, enabling visiting services to be scheduled and shared across multiple participants within neighbouring regions.
NDIS Plan Utilisation in Queensland 57
Theme Suggestions
4.1.5: Provide incentives to support visiting services (e.g., cleaning, garden care, repairs, and trade services) such as free accommodation in town, and the ability to schedule multiple appointments and advertise presence in town. 4.1.6: Enable local rating systems for services and support workers (like a travel rating website). 4.1.7: Ensure that NDIS services do not deplete or erode natural, and volunteer supports, which are often more sustainable and consistent so should be protected and utilised where possible. 4.1.8: Develop a network of rural/remote and First Peoples support coordinators and plan managers to promote good practice and reward excellence. 4.1.9: Develop a network for supporting those who self-manage NDIS plans in regional/rural and remote regions to provide support and encouragement, advice, and guidance to each other. 4.1.10: Allow funding flexibility in rural and remote regions if visiting services can provide a range of services. 4.1.11: Enable flexibility in selection of service providers and support workers in rural/remote and First Peoples communities to explore creative methods of meeting needs. 4.1.12: Ensure that rural/remote and First Peoples participants have a mechanism for connecting to other people beyond their support team. 4.2 Responsive 4.2.1: Review the suitability of plan management and support coordination services in regions where there is minimal choice to ensure service no coercion and control. delivery 4.2.2: Removal or replacement of support workers, even temporarily, should trigger a review of overall management by a service system provider to ensure consistency and certainty for participants. 4.2.3: Develop a method for quickly notifying the system of changed circumstances that potentially impact on needs and service delivery. 4.3 Support 4.3.1: Develop easy to access support worker training programs to facilitate a minimum exposure to good practice. worker training and development
NDIS Plan Utilisation in Queensland 58
Findings Recommendations
a dn First Peoples were much more Ukety than other noo-4ndlgenous n.aal and remote residents to C'.11/e attention to the entire IS system to
have a plan they were not utllslng and more kely to be waltln,g on plans to be approwd. develop a l<n<wA.edgeab1.e and ~=====- workforce capable of OJ)E!fatlng In the People who lived n most rura and remote locations were sUg Uy less U y to utilise C---....p
thH plan if was acoes.sed and approYed. a complex and nuanced circumstances created
a by regional rural and remote resklence. {'/'·°I Over 40" of First Peoples wi a disability were not u ng NOIS plans .-respective of where
• ,~ they ved, whereas no non-Indigenous people wilh a dlsabllrty were not using their plans. Ensa-e mandatory knOll'lledge about First
Peoples cultural reqtlirements and how this Scope and broad solutions areas Interfaces with disability. Requirements tor support workers to demonstrate capablllty In terms of ooderstanclng the 1mp4Jcatloos of sexuality and gender preferences on dlsabllrty service provision. Develop latent acqulsl on strategies
across OIA and the DIS system
more generally to enS1Ure greater representation of people with dlsabl~ from rural and remote areas and First Peoptes..
Estabtlsh clear reqwrements for all staff’ across the DIS system to ensure mlrwnum standards of respect and accesslbllrty In all Interactions. Where to next • See report tor ful Ust of recommendatlons.
Needs lmprOYe-ment
© CI;Jr;,=:l 0 o:::fa ~ rf""l!!!. f.~~~ ~ ]) ~ ,Pi. Q ~ v
Opportunity Business Sucoesses tha Leading Good tundrlg Lack of privacy Flexibllrty could Lack of 5ef'Vices, ActlW! Corrf>lex LackofFP
to focus on opportU'litles should be shared thewortd packages bu In small towns allow better use enabling reso oes abuse& Interfaces staff members
strengths nsma towns & celebrated extraoosts In but COltd delM!f of amly & friends & staff' In ruraV discrlminatlo that lead to across.the
rural/remote areas nan.al networks remote areas for rst Peoples 00 Sloo NDtSsystem
,1lh,Griffith MENZll CtAl'~<•...... ot=wt.el.ll,l;.lan•~~,.., rltM MMto~t....., #'id TheHopkinsCentre ~~UNl\'EqSTY 11'1"1:I.UUIII~ ttl.AT....,., R&..ee,ch roe- Rent,bllJIMlon 1111d Re51tience s,'NAPSE
NDIS Plan Utilisation in Queensland 59
References
APO Analysis & Policy Observatory. (2021). Commonwealth study into NDIS plan utilisation: Synthesis report. https://apo.org.au/node/314615
Australian Government. (2021). Australia’s Disability Strategy 2021-2031. https://www.dss.gov.au/disability-and-carers/disability-strategy Dickinson, H., & Brown, A. (2021). Comparative analysis of budget utilisation in individualised funding models. UNSW Public Service Research Group. https://apo.org.au/node/314667 Disney, G., Yang, Y., Summers, P., Gupta, A., Byars, S., Bonyhady, B., & Kavanagh, A. (2021). NDIS Plan Utilisation Project: Describing understanding and explaining inequalities in plan utilisation. The University of Melbourne: Melbourne Disability Institute. https://apo.org.au/node/314668 Harvey, N., & Holmes, C. A. (2012). Nominal group technique: An effective method for obtaining group consensus. International Journal of Nursing Practice, 18(2), 188-194. https://pubmed.ncbi.nlm.nih.gov/22435983/ McMillan, S. S., Kelly, F., Sav, A., Kendall, E., King, M. A., Whitty, J. A., & Wheeler, A. J. (2014). Using the nominal group technique: How to analyse across multiple groups. Health Services and Outcomes Research Methodology, 14(3), 92-108. https://link.springer.com/article/10.1007/s10742-014-0121-1 McMillan, S. S., King, M., & Tully, M. P. (2016). How to use the nominal group and Delphi techniques. International Journal of Clinical Pharmacy, 38(3), 655-662.
Melbourne Disability Institute, UNSW Public Service Research Group, & Future of
Employment and Skills Research Centre. (2021). Commonwealth study into NDIS plan utilisation: Synthesis report. https://apo.org.au/node/314615
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. The University of Adelaide: Future of Employment and Skills Research Centre. https://apo.org.au/node/314666
National Disability Insurance Agency. (2019). Overview of the NDIS Operational Guideline –
About the NDIS. https://www.ndis.gov.au/about-us/operational-guidelines/overview-ndis operational-guideline/overview-ndis-operational-guideline-about-ndis
National Disability Insurance Agency. (2021a). Explore data. https://data.ndis.gov.au/explore-data
National Disability Insurance Agency. (2021b). Glossary. https://www.ndis.gov.au/about-
us/glossary#p National Disability Insurance Agency. (2022). NDIS quarterly report to disability ministers. 31 April 2022. https://www.ndis.gov.au/about-us/publications/quarterly-reports
Productivity Commission. (2017). National Disability Insurance Scheme (NDIS) costs. Productivity Commission study report. Commonwealth of Australia. https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs-overview.pdf Queensland Government. (2021). Queensland Government response to the Queensland Productivity Commission’s Inquiry into the NDIS market in Queensland. Queensland’s strategic direction statement for the NDIS market. https://www.dsdsatsip.qld.gov.au/our work/disability-services/disability-connect-queensland/national-disability-insurance scheme/inquiry-ndis-market-queensland
NDIS Plan Utilisation in Queensland 60
Queensland Productivity Commission. (2021). The NDIS market in Queensland. https://www.treasury.qld.gov.au/queenslands-economy/office-of-productivity-and-red tape-reduction/former-queensland-productivity-commission/
Rankin, N. M., McGregor, D., Butow, P. N., White, K., Phillips, J. L., & Young, J. M. (2016). Adapting the nominal group technique for priority setting of evidence-practice gaps in implementation science. BMC Medical Research Methodology, 16(1), 1–9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5002198/
Spassiani, N. A., Sawyer, A. R., Abou Chacra, M. S., Koch, K., Munoz, Y. A., & Lunsky, Y. (2016). “Teaches people that I’m more than a disability”: Using nominal group technique in patient-oriented research for people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 54(2), 112-122. https://pubmed.ncbi.nlm.nih.gov/27028253/
NDIS Plan Utilisation in Queensland 61
A joint initiative of the
Division of Rehabilitation, Metro South Health, and Queensland •~ Ci "ffith MENZIESftEALTH INSTllVfE Metro South Health uJtERSITY QillENSLAND Government Menzies Health Institute Queensland, Griffith University.~UJ
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