Volume 31, Issue 4 pp. 648-658
ORIGINAL RESEARCH
Open Access

The lived experience of receiving services as a National Disability Insurance Scheme participant in a rural area: Challenges of choice and control

Luke Wakely PhD

Corresponding Author

Luke Wakely PhD

Department of Rural Health, University of Newcastle, New South Wales, Tamworth, Australia

Correspondence

Luke Wakely, Department of Rural Health, University of Newcastle, 114—148 Johnston Street, Tamworth, NSW 2340, Australia.

Email: [email protected]

Contribution: Conceptualization, ​Investigation, Methodology, Project administration, Supervision, Formal analysis

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Elisha Green Bachelor of Physio (Hons)

Elisha Green Bachelor of Physio (Hons)

Discipline of Physiotherapy, School of Health Sciences, University of Newcastle, Tamworth, New South Wales, Australia

Contribution: ​Investigation, Formal analysis

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Alexandra Little Bachelor of Speech Pathology

Alexandra Little Bachelor of Speech Pathology

Department of Rural Health, University of Newcastle, New South Wales, Tamworth, Australia

Contribution: Conceptualization, Methodology, Formal analysis, Supervision

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Karin Fisher PhD

Karin Fisher PhD

Department of Rural Health, University of Newcastle, New South Wales, Tamworth, Australia

Contribution: Formal analysis

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Katrina Wakely Bachelor of Occupational Therapy

Katrina Wakely Bachelor of Occupational Therapy

Department of Rural Health, University of Newcastle, New South Wales, Tamworth, Australia

Contribution: Conceptualization, Formal analysis, Supervision

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Kate Currie Bachelor of Physiotherapy

Kate Currie Bachelor of Physiotherapy

Department of Rural Health, University of Newcastle, New South Wales, Tamworth, Australia

Contribution: Formal analysis, Supervision

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Rebecca Wolfgang Master of Philosophy (Human Factors)

Rebecca Wolfgang Master of Philosophy (Human Factors)

Department of Rural Health, University of Newcastle, New South Wales, Tamworth, Australia

Contribution: Conceptualization, ​Investigation, Formal analysis, Supervision

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First published: 02 June 2023
Citations: 4

Abstract

Objective

To explore the lived experience of people with a physical disability residing in a rural area and receiving services under the NDIS.

Setting

Rural areas of New South Wales classified as Modified Monash Categories 3–7.

Participants

Semistructured interviews were conducted with seven purposively sampled participants who self-identified as having a physical disability, were receiving NDIS funding and lived in a rural area of NSW.

Design

Data collection and analysis were guided by hermeneutic phenomenology.

Findings

We interpreted three interrelated themes; Uncertainty of Access, Battling Bureaucracy and Improving Relationships and Independence. The themes articulate the essence of this phenomenon, Challenges to choice and control.

Discussion

The findings of this study suggest that while people with a physical disability living in rural NSW acknowledged positive changes to their everyday lives through the NDIS, there remains a sense of confusion, frustration and disconnection with the system. Burdensome, inconsistent and untimely communication with NDIS staff caused uncertainty with the process and required negotiation to resolve issues such as delays in funding, essential services or equipment modifications. The essence of Challenges to choice and control articulates what the person had to negotiate within their lifeworld. Further guidance and clarity for people with disabilities to access the NDIS system would ensure confidence to navigate the system and receive the essential supports they need.

What is already known on this subject?

  • People with disabilities residing in rural Australia experience the health inequalities associated with rural living as well as the inequalities associated with having a disability.
  • The National Disability Insurance Scheme has provided a pathway to access funding for people with disabilities in Australia.

What this paper adds?

  • Participants detailed ongoing issues with negotiating the NDIS, communicating with NDIS planners and accessing a sufficient range and frequency of services.
  • This study describes the Challenges to choice and control that the people with a physical disability in order to utilise the NDIS funding.

1 INTRODUCTION

People with a disability who reside in rural areas of Australia appear to experience the combined inequities of living with disability and residing in a rural area.1, 2 They often need to travel long distances to access services and experience additional expenses specific to their disability.3, 4 Ongoing issues with recruitment and retention of disability service providers in rural and remote areas have threatened the viability of existing service provision and hindered the establishment of potential new services.5 Prior to the implementation of the NDIS (2014–2016), Gallego, Dew6 noted that people with a disability in rural areas had to wait on average 6.6 months to receive speech pathology and had to travel an average of 2.6 h to receive physiotherapy, often to cities, due to unavailability of services in their local area. Tensions often exist between what services people with a disability require and what is possible in relation to access to services.5, 7 These adverse experiences are often further compounded by communication difficulties amongst different people and organisations involved in the delivery of their care.8

The introduction of the NDIS has increased the demand for health and disability services in rural Australia, and this has placed further stress on what has been described as a ‘thin’ market of service provision.9 The regulation of the disability sector by the NDIS is a polycentric system meaning it targets audiences such as people with disabilities, frontline support workers and allied health professionals and disability providers.10 Founded in human rights principles, it embraces elements of developmental (enabling self-advocacy), preventative (screening out workers with criminal convictions) and corrective (powers to ensure providers comply with rules and regulations) measures.11 Overseeing these elements is the NDIS Quality and Safeguards Commission that operates independently of the National Disability Insurance Agency.12

Despite the regulation of the NDIS, rural people with disabilities reported frustrations in accessing a range of services and supports.13 For instance, the Health and Community Services Portfolio Committee reported gaps in the delivery of therapy supports and available choices, particularly for allied health services in remote, rural and regional areas.14 Service providers argued that the service provision in rural and remote areas was difficult due to the cost of doing business such as travel, office infrastructure and attracting a workforce.5, 14 Service providers also argued that the market was not ready because of a lack of service systems in rural and remote areas.5, 14

NDIS participants living in rural and remote regions are on average 15% more likely to experience unmet demand for supports compared with NDIS participants living in urban areas.15 Mavromaras and Moskos15 reported that the reasons for unmet demand were diverse, but most often related to long wait times for services or lack of a local provider. For many people with a disability, the barriers they commonly experience when accessing services are amplified if they reside in a rural area.1, 2 Understanding the nature of experiences and needs of people living with a disability receiving NDIS funding in rural and remote Australia is critical to gain a deeper understanding of the lived experience of people with a disability in relation to the NDIS.

2 METHODS

The aim of this interpretive research was to gain a deep understanding of the lived experience for people with a physical disability living in rural and remote regions of Australia when accessing and receiving services under the National Disability Insurance Scheme. This exploration of the nature of lived experiences is based on an interest in the difficulties that people in rural and remote regions of Australia have in accessing and receiving adequate services for their disability. The setting for this research was in diverse rural locations across New South Wales.

Our research team comprised one health professional honours student and six health professional academics from the University of Newcastle Department of Rural Health in Australia. Represented within the team was a range of health professional backgrounds (physiotherapy, occupational therapy, speech pathology and nursing). This diversity in the team provided a source of wisdom and variety of perspectives on the topic, integral to credibility and coherence between method and topic.

2.1 Methodology

Hermeneutic phenomenology underpinned this research. Hermeneutic phenomenology examines texts, to uncover a reflective understanding by discovering ‘something “telling,” something “meaningful,” something “thematic” in the various experiential accounts’ written in the texts.16 Having isolated thematic meanings suggests that questions are asked of the text, such as ‘what is going on here’? ‘What is this example an example of’? While interpreting the meaning of the theme ask, ‘what is its meaning’? ‘What is its point’?16 Hermeneutic phenomenology is used when a deeper understanding of a phenomenon is required and provides the opportunity to make sense of others’ lived experiences through interpretation of texts.17 The circularity of understanding the phenomenon is emphasised through the use of Gadamer's notion of a hermeneutic circle where understanding becomes deeper and richer in an interpretive movement back and forth through the possible meanings constantly acquiring new knowledge.18 Given our approach was interpretive and sought to explore lived experience, this methodology was congruent with our research aims.

2.2 Participants

Potential participants were purposively sampled. Eligibility criteria for the study included: self-identifying as having a physical disability; been receiving NDIS funding, residing in a rural area of NSW; and being aged 18 years or over. Rurality was determined using the Modified Monash Model19 classification, and rural areas were defined as MM3 or greater.

Recruitment to the study was a multipronged approach via different mediums. First, flyers advertising the study were placed in the waiting rooms of private and nongovernment rural-based health service providers. Second, electronic flyers were posted on social media pages of rural health organisations likely to be accessed by potential participants. Finally, a member of the research team (LW) undertook an interview with a rural-based radio program to advertise the study.

Potential participants contacted the research team via telephone or email to indicate their interest in contributing to the study. Interested people were sent an information pack, including an information statement to provide additional detail about the study and a consent form. Following the return of a completed consent form, a second telephone call was conducted by a research team member who administered the TICS-m to confirm sufficient cognitive ability to ensure informed consent. Participants needed to score 27 or higher to be eligible for the study.20 If this was achieved, a mutually convenient time, place and medium for an interview was arranged. Participants were offered their choice of a telephone, video-call or face-to-face interview. Participants were able to bring a support person to the interview if they wished, but no participant exercises this option.

2.3 Data collection

Participants provided demographic information verbally to the interviewer to provide context to the interview. Participants were then asked about their experience engaging with, and receiving, services under the NDIS and the effect this had on their day-to-day life. Interview questions focused on lived experience moments and experiential exemplars. One researcher (EG), a female physiotherapy honours student who was trained in qualitative interview technique, conducted all interviews via telephone, video call or face-to-face. The interview guide was developed in consultation with the research team (see Appendix 1). The interviews were audio-recorded and transcribed verbatim by the interviewer. Following each interview, detailed field notes were recorded to capture any contextual or emotive aspects that might not have been evident in the audio recordings and to detail the interview's initial thoughts on the interview. Interview transcripts were returned to participants to ensure that they felt the content reflected their lived experience. Process and reflection diaries were kept by all members of the research team so that an audit trail of methodological decisions was kept and that written reflection was used to facilitate reflexivity.

2.4 Data analysis

Data were analysed thematically and iteratively. Initially, each interview was read in entirety, while concurrently listening to the recording, to gain an understanding of the interview as a whole, and to note the tone and inflection of the participants’ comments. Following this, each phrase within the transcript was read and assigned codes of meaning. These codes were further analysed and reflected upon through the use of questioning. As new insight and understanding emerged from the analysis, these were dialogically checked in the original transcript to ensure credibility. These insights and understanding emerging from the analysis were reflected and discussed with co-researchers. Data management was facilitated using NVivo Version 12.21 Discrepancies of understanding and interpretation were embraced for rich discussion and resolved by moving to a higher conceptual level. Data collection and analysis continued until no new thematic ideas were emerging.

2.5 Rigour

The criteria proposed by Lincoln and Guba22 informed the quality of this project. These include credibility, transferability, dependability and confirmability. Credibility was considered by corroborating the themes found using direct quotations and explicitly outlining our findings. The notion of transferability is based on the reader's interpretation of the research. We collected and have reported in as much detail as possible the demographic data that contextualised this study to aid reader transferability. Dependability was strengthened through the detailed description of the processes of data collection and analysis. Dependability was further enhanced by having all members of the research team contribute to data analysis so that multiple perspectives were considered. Confirmability was enriched through being conscious of not asking the participants leading questions during the interviews and recording of, and reflection on, field notes and a reflection diary so the impact of personal bias and preconceptions could be considered reflexively.

2.6 Ethics approval

The University of Newcastle's Human Research Ethics Committee Ethics approved the study (Approval No. H-2017-0425).

3 FINDINGS

3.1 Participants

Seven NDIS participants, four females and three males, who resided in rural locations in NSW and presented with a variety of physical disabilities participated in the study. Their demographic data are presented in Table 1. No participants dropped out of the study once they expressed interest, and all interviews took 45–60 min.

TABLE 1. Participant characteristics.
n %
Gender
Male 4 57
Female 3 43
Age range (years)
20–29 0 0
30–39 1 14
40–49 0 0
50–59 2 29
60–69 4 57
Modified Monash Model category
3 3 43
4 4 43
5 5 14
6 6 0
7 7 0
Participant diagnosis/condition
Amputee 1 14
Autoimmune condition 1 14
Neurological condition 5 72
Years had disability/diagnosis
0–9 4 57
9–19 0 0
20–29 1 14
30–39 0
40–49 1 14
50–59 1 14
Marital status
Married 5 72
Never married 0 0
DeFacto 0 0
Divorced 1 14
Separated 1 14
Specific cultural background
Non-Aboriginal 6 86
Aboriginal 1 14
Level of education
Master/doctorate 0 0
Bachelor 3 43
High school 4 57
Trade 1 14
Diploma/certificate 4 57
Did not complete high school 1 14
Employment
Full time 1 14
Part time 1 14
Casual 0 0
Unemployed 5 72
Services currently using NDIS funding for
Assistance with daily life 7 100
Consumables 1 14
Assistance with social and community participation 2 29
Transport 1 14
Allied health 7 100
Assistive technology 3 43
Annual household income before tax (AU$)
$0–$18 200 1 14
$18 201–$37 000 0 0
$37 001–$90 000 2 29
$90 000–$180 000 2 29
$180 001 and over 2 29

3.2 Thematic analysis

We interpreted three interrelated themes as, Uncertainty of Access, Battling Bureaucracy and Improving Relationships and Independence. The essence of this phenomenon is articulated as Challenges to choice and control.

3.3 Theme: Uncertainty of access

This theme depicts the difficulties participants had accessing services. Participants would often have the funding through their NDIS package to engage the services they needed, particularly allied health services and home maintenance services, but struggled to source them in their local area. The main issues causing these difficulties were that the services did not exist locally necessitating significant travel to access or that there were issues related to a lack of understanding of access in rural areas during the planning process.

Providers would not always be able to travel to the participants' locations, forcing many participants to travel to receive the services they needed. One of the uncertain complications people experienced and had to negotiate was an absence of NDIS services in their local rural area creating a lack of choice and control.

…I was living in [rural town 1] and, there was no NDIS physio at the time, so that was hard…then we moved to [rural town 2]. I didn't have a speech pathologist here. So, I had to Skype to Sydney, so that was difficult. It's very limited with speech pathologists. We just need more speechies.Participant 1 MMM 3

While on occasion participants found solutions to some issues of access, this often subsequently created other issues. For example, one participant spoke of sometimes being too exhausted having to travel to access services and subsequently needing to rely on others to assist.

My home is 50 K's [kilometres away, and] I'm not [always] able to drive. At the moment, I'm capable of driving myself. It's one of my goals within the NDIS program to be independent, so I do drive. But there are days I can't and so I have somebody that does that with me…Participant 4 MMM4

Another participant described how they could not trial expensive medical footwear prior to ordering it and was concerned about spending NDIS funding on something that might not have fitted or have been comfortable.

I went and seen the people in town about these medical-grade shoes, but they've only got ones that they can show you [in a] photo…. it's a pity you aren't in [metropolitan city] because … down there they have hundreds of shoes [to try on] and…you might see which ones suit you better(Participant 7 MMM 3)

Even if participants reported that they could manage the travel physically, they spoke of struggling with both the financial and time cost of travel.

They [NDIS] want me to go to [another larger rural town]. It's going to cost me $120 each way by cab. And you know, I've had them say why don't you get down and get a bus? I said, love I'm in a wheelchair. How do I get down to the bus? How do I get in the bus? Well, catch a train? [they suggested] I said, I'm regional, there's two trains a day… that's what you get for living in a nice rural location.Participant 2 MMM 4

This quote also illustrates the other element of access issues expressed by participants. There was often misunderstanding from NDIS staff about resources available locally to assist with accessing services. Having to self-advocate and communicate about the nature of local services was a considerable source of stress for participants.

[I] worked out that the person who did my plan was someone living in [another rural town]. [They] wouldn't know the [local area where I live]. [They] definitely didn't understand ageing spinal cord injury guys living on an acreage [in rural town]. I still find that's just a really dumb process.Participant 6 MMM 5

Participants explained that having to regularly explain issues of access to NDIS planners and advocate for their needs was stressful and exhausting. If they could not access appropriate support services, the participants expressed concern that their funding went unused.

There is a real issue with some funding not getting used in the local area. ‘Cause even though you have all that funding that you had lined up to do that particular goal, it kind of just sits in the bucket, that kind of knocks the positivity out of you.Participant 4 MMM 4

While participants reported the NDIS had improved their access to funding for services, in many cases it had not improved their ability to access services. Having to negotiate with and educate NDIS planners about the nature of access within their rural community was stressful and emotionally draining for participants.

3.4 Theme: Battling bureaucracy

This theme depicts the frustration that participants felt having to negotiate the NDIS system bureaucracy. Participants regularly described delays in the provision of equipment, difficulties with reports and forms, or not having consistency in who they needed to contact to address issues.

My husband talks to the NDIS people, because I'm, I'm just fed up with the bureaucracy. I'm just fed up with the NDIS people. I'm just so sick of having to strive, doing the appeals and stuff like that. And now after five years I'm just sick of that… It's just pointless.Participant 1 MMM 3

Participants felt disempowered and fearful about the uncertain nature of the planning process and inconsistencies in plan outcomes.

It's scary to think that somebody can make a decision over your medical condition… there's no empathy…it's just words or numbers on paper and what you've been able to negotiate. And if they line up, it's good for you, but they don't. You do have to provide a lot of information - ammunition or whatever you want to call it - to be able to get what you need.Participant 4 MMM 4

It is worth noting the participant's use of the word ammunition as this demonstrates that participants viewed the planning process and interaction with NDIS staff as a battle. Participants felt their treatment within the NDIS system lacked understanding about the impact bureaucratic obstacles had on their lives and independence. Providing the ammunition which in this context was reports, evidence and self-advocacy was an additional stress experience by participants. One participant described their exhaustion and frustration at having to keep following up the NDIS to find out where their motorised wheelchair was.

I had my OT do her report and then [send it to] the NDIS, somehow it got lost somewhere. [So] the OT sent it through again, and then we found that the NDIS had changed the way they expected the reporting done. So that year… they didn't get it through in time. So in the second year, I kept pursuing it. I kept calling the 1800 number…and they'd say, well, it's moved onto this person and moved on to that person. [Then] I found out that it needed to be a different form process. So, by the time it needed to be here, it had to be re-done completely.Participant 3 MMM 4

Some participants experienced abrupt changes in their funding which had considerable impact on their daily lives. Participants felt the reasons for these changes were not communicated well and subsequently necessitated battling with the NDIS to try to recover the lost funds. For example, one participant had their funding reduced by $30 000 and the reasons for this were not explained to them.

I'm in discussions with them [the NDIS], [about] why I need the $30,000 back. Because, my funding goes from February to February and it's going be November [and] I'll run out of money and I won't be able to have a shower until February again…. My handler [planner] with the NDIS didn't even let me know that the new plan was coming out and hey, you're going to be $30,000 less. I wasn't even told.Participant 2 MMM 4

Due to the stress and frustration, some participants opted to limit their involvement with the NDIS. For example, those participants who chose to self-manage their NDIS funding and subsequently reduce their interaction with the NDIS bureaucratic processes reported more positive experiences.

I have found with self-management [there] is flexibility. It empowers you to hire and fire. You can be a lot more agile if you need to fill a gap or something. You know, it's a simple as me going to some of the Facebook pages and specifying what I want. I've generally got 6 or 8 people wanting to come and work with me.Participant 6 MMM 5

It appeared that the choice was to battle through the bureaucracy with the NDIS or take on the administrative burden of self-management, and this was not for everyone.

Self-management, I don't want to do that. That's what I've been doing all of my life, managing people and other things. I'm tired of it. So, it's helped me have another journeyParticipant 4 MMM4

Those participants who had an existing skillset were able to deal with the complexity of self-management and subsequently found more flexible in terms of choice and control. But those who may have lacked the necessary management skills and resources required to self-manage lacked this form of choice and control and thus continued to battle the bureaucracy.

3.5 Theme: Improving relationships and independence

This theme encompassed participant account that when the NDIS funding was able to be utilised it had a considerable impact on their life. The elements of their life that improved were their relationships with others and their ability to participate in day-to-day activities.

Prior to receiving NDIS funding, participants related that their physical condition often meant that they had no choice but to rely on family and friends to take on the role of carer. Participants reported that accessing NDIS funding relieved their significant others from some caring duties by funding the employment of external services to take over some of these roles. One participant spoke about how their wife could now go to work due to the NDIS funding providing relief from household duties.

My wife is able to go to work because NDIS provides me with the funds to get a person that comes to my house and cleans…. [and] provide some food. People [funded by the NDIS] take me to appointments…. and the main thing for me, is that it leaves my wife to be able to pursue her stuff.Participant 4 MMM4

Participants described that the burden of caring changed ‘quality time’ within the relationship, creating feelings of guilt because of this imposed role. Minimising the impact their disability had on their relationships was a key priority for many participants, and this was reflected in their NDIS planning.

I just really wanted to take some of the burden away from my wife around the house, so I built those sort of things into my goals…. I knew would help us going forward.Participant 6 MMM 5

Sometimes, due to the difficulties accessing local services, participants developed innovative strategies such as employing friends to become private providers who then delivered the NDIS services they needed.

In the beginning, I just couldn't find people [to provide support services] in my area. It was really hard. And a lot of the places… had their books closed because they were so full. I ended up asking a friend who was only working once a week to please get an ABN [Australian Business Number] [I said to my friend] then I can hire you and you can come and clean my place if you're okay to do that, which she did.Participant 3 MMM 4

This strategy was necessitated due to a lack of local services, and while having friends paid to provide services reduced the burden on family, some participants noted it could be uncomfortable having their friends provide services for them. Furthermore, this was only feasible for general support services and not for those requiring qualified personnel such as allied health services.

Participants also noted that when they could access assistive technology and equipment through the NDIS in a timely manner, this had a poignant impact on their independence and quality of life. The independence provided by assistive equipment gave the participants a sense of purpose and control again and relieved the burden they felt they were placing on their families. One participant stated:

I think my quality of life is pretty good now days whereas before… I was pretty much down in the dumps [depressed] with falling over. Before I had those [ankle foot orthoses], I was falling over all the time…. but now that's not happening so my life is so much better…. I can get out and can feel safe enough to walk down the street or if you go out to dinner, you feel safe enough to walk into a place without using walking sticks and everything.Participant 7 MMM 3

While another participant explained how his assistive technology allowed him to have a social life:

So, we've got a device called a BATEC [powered propulsion system for a manual wheelchair]… And what it's allowed me to do is be far more involved around the property… I can go and visit my neighbours. So, it just helps you be more engaged… it reduces social isolation…Participant 6 MMM 5

Conversely, delays in the funding and provision of equipment negatively impacted on participants' quality of life. In some cases, they were forced to develop alternative strategies to maintain their independence that was sometimes dangerous for themselves or their carers.

Well, I had these two aluminium ramps, really illegal. We bolted them down, [and] I had a carer that could push me up and down the ramps. They were really, really deadly when it was wet because it was slippery. Well, it [the wheelchair] just slipped, slipped and slid. We had to make sure [the carer] wasn't wearing thongs that he had to wear decent shoes and, and clear a path [in case I fell, so there] wouldn't be any scar or I wouldn't end up in the garden… we got through it, but now that I've got the lift, it's perfect.Participant 2 MMM 4

The timeliness of equipment provision was a key concern for participants. Due to the impact, a lack of timely equipment provision had on their independence.

3.6 Essence: Challenges to choice and control

The essence of this phenomenon is described as Challenges to choice and control. NDIS funding has provided critical resources for people with a disability in rural areas. Yet, this has also led to the need to manage these resources within the NDIS system which they report, is often a volatile and confusing environment. There was a challenging dichotomy of choice and control for participants. One option was to attempt to engage with and subsequently negotiate the complexities of the NDIS system, but this involved self-advocacy that was stressful, time-consuming and often had varying amounts of success. Alternatively, participants could seek other pathways such as self-management of NDIS funding, purchasing resources themselves or employing friends to provide services. This was all experienced within the rural context which presented additional rural-centric challenges such as a lack of local services, having to travel to access services and NDIS staff not understanding the nature of rural communities.

4 DISCUSSION

The findings of this study suggest that while people with a physical disability living in rural NSW acknowledged positive changes to their everyday lives through the NDIS, there remains a sense of confusion, frustration and disconnection with the system. Burdensome and inconsistent communication with NDIS staff caused uncertainty with the process and required negotiation to resolve issues such as delays in funding, essential services or equipment modifications. Similar inconsistencies have been reported elsewhere.13 Engaging people with a disability requires a willingness to work collaboratively and having some knowledge about the person's individual profile and to ensure a sensitive and common sense approach to NDIS planning.23 Participants in this study experienced being placed under the umbrella of a particular disability, thus taking away from being seen as ‘whole’ causing frustration. Seeing people as whole, complex persons instead of their ‘disability’ at the NDIS system level requires a shift in power dynamics to understand the person in a wider and more comprehensive context.24

Many of the experiences in this study related to inequities of service provision and difficulties in finding essential local services. This concurs with reports that the introduction of the NDIS has amplified the service gap and thus placed further stress on the ‘thin’ market of service provision in rural Australia.9 Unmet needs are one of the most common elements of inequities that people with disability face.23 To meet the demands of people with disabilities in rural areas required a concerted effort to ensure that structures are in place to ensure an adequate workforce availability. Consistent with other research, for example, Gallego et al.6 reported access to allied health services in rural areas was difficult given the lack of service providers and that frequency of some essential services was necessary for some people with disabilities.

In taking control of the process and coming to terms with the NDIS process, participants made choices about their circumstances in relation to how they would progress their NDIS plan and their embodiment of a new lifeworld. While the NDIS aims to empower participants to be autonomous in the decisions surrounding the services and supports they require,25 there remains limited guidance on how participants can make correct decisions that correlate with the NDIS framework.26 Participants in this study wanted clear guidance and support from the NDIS, especially during their initial planning process to become an NDIS participant. Guidance and support through transparency of NDIS processes can contribute to make the services more approachable, welcoming and user-friendly.27

Some participants in this study were able to find innovative solutions to issues of service access, for example employing family or friends in carer roles. But within a robust system, this should not be necessary. Some participants in this study reported that they underutilised their funding in the early years of them receiving the NDIS. They reported that this was due to confusion about what services they were eligible for and what supports they needed. While grateful for the funding, participants spent considerable effort to access services and, in some circumstances, found their own innovative solutions where service gaps existed. Participant experiences in this study were largely dependent on the rural region they lived in and the services that were available to them. Difficulties accessing services and the inequities present within rural and remote locations such as geographical isolation, and large travel distances have been highlighted in previous research and were evident throughout this study.3

Strengths of this study include the in-depth and semistructured nature of the interview which allowed the researchers to explore areas of the lived experience that had not been considered prior to the interview, for example the impact of funding on participants’ relationships. We were able to explore perspectives from a diverse range of participants from a wide range of rural areas of New South Wales. Yet, there are some limitations in the transferability of these findings. The participants in this study were only those with a physical disability and generally had resources such as financial, vocational skills and family support. The experience of other NDIS participants may be different particularly those who have intellectual or cognitive issues who were excluded from this study. Further innovative research is needed to explore their experiences. Furthermore, it was not feasible to interview participants more than once and this limited the opportunity to ask follow-up questions or clarify statements.

5 CONCLUSION

This study provided a deep understanding of the lived experience for people with a physical disability living in rural and remote regions of Australia when accessing and receiving services under the National Disability Insurance Scheme. The essence of the participants’ lived experience, Challenges to choice and control was the essential element that encompassed all aspects of this experience. For participants of this study, the NDIS presented a pathway for improved choice and control in their life, yet every element was challenging and arduous. It is concerning that inequities in service provision inhibited the choice of service providers causing people to travel long distances to source essential services they needed. For the NDIS to work in an effective and timely way in rural communities, it requires consideration of how best to boost local rural services in an industry that experiences current workforce shortages. Further guidance and clarity for people with disabilities to access the NDIS system would ensure confidence to navigate the system and receive the essential supports they need. Services need to be flexible, relevant, approachable and accessible so that an acceptable fit between the person with disability and the system is created.

AUTHOR CONTRIBUTIONS

Luke Wakely: Conceptualization; investigation; methodology; project administration; supervision; formal analysis. Elisha Green: Investigation; formal analysis. Alexandra Little: Conceptualization; methodology; formal analysis; supervision. Karin Fisher: Formal analysis. Katrina Wakely: Conceptualization; formal analysis; supervision. Kate Currie: Formal analysis; supervision. Rebecca Wolfgang: Conceptualization; investigation; formal analysis; supervision.

ACKNOWLEDGEMENT

Open access publishing facilitated by The University of Newcastle, as part of the Wiley - The University of Newcastle agreement via the Council of Australian University Librarians.

    CONFLICT OF INTEREST STATEMENT

    The authors declare no conflict of interest. No financial support was provided for this study.

    APPENDIX 1

    Interview guide

    Question:

    To provide some context and background, could you tell me about a typical day in your life?

    Probes:
    • Are there any activities that you need assistance with?
    • Can you tell me more about that?
    • Could you explain further?
    • Could you give me a specific example?

    Question:

    Can you tell me about the supports that you receive through your NDIS funding?

    Areas for exploration:
    • How long have you been a participant of the NDIS?
    • Categories of paid supports that the person may be receiving

      • Core supports
      • Improved daily living

    Probes:
    • For what specific daily activities are you receiving the support?
    • What specific clinical services are you receiving?

    Question:

    Can you tell me about a time when the NDIS has influenced your life?

    Possible areas for exploration:
    • Can you tell me about a time when the NDIS had a positive influence on the person?
    • Can you tell me about a time when the NDIS had negative influence on the person?
    Probes:
    • Could you explain further?
    • Could you give me a specific example?
    • Could you tell me how that made you feel?
    • Can you tell me more about that?

    Question:

    Can you tell me about a time when the NDIS funding has helped you achieve a goal?

    Possible areas for exploration:
    • Accessing a service or community activity
    • Accessing equipment or home modifications
    • Overcoming a barrier to independence
    Probes:
    • Could you explain further?
    • Could you give me a specific example?
    • Could you tell me how that made you feel?
    • Can you tell me more about that?

    Question:

    Can you tell me about a time when the NDIS funding may have hindered you achieving a goal?

    Possible areas for exploration:
    • Accessing a service or community activity
    • Accessing equipment or home modifications
    • Overcoming a barrier to independence
    Probes:
    • Could you explain further?
    • Could you give me a specific example?
    • Could you tell me how that made you feel?
    • Can you tell me more about that?

    Question:

    Can you tell me about a time when residing in a rural area has influenced your ability to achieve your goals under the NDIS?

    Possible areas for exploration:
    • Influenced in a positive manner?
    • Influenced in a negative manner?
    Probes:
    • Could you explain further?
    • Could you give me a specific example?
    • Could you tell me how that made you feel?
    • Can you tell me more about that?

    Question:

    Can you tell me how the NDIS funding has changed any other aspect of your life?

    Probes:
    • Could you explain further?
    • Could you give me a specific example?
    • Could you tell me how that made you feel?
    • Can you tell me more about that?

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