Accessing the NDIS: signing deaf people’s experiences

Abstract

In Australia, the National Disability Insurance Scheme (NDIS) seeks to ensure that disabled people can access the support they need to live an independent life. There is limited knowledge around the NDIS client experience of signing deaf people—people who use Auslan as their primary language. This article reports on a pilot study that explored signing deaf people’s experiences when accessing the NDIS to obtain a service package. Signing deaf people were invited to join a focus group and share their experiences. While all participants indicated that their initial contact with the NDIS and its provision of essential information through Auslan was adequate, they believed that access was difficult when they needed more detail. Also, all participants noted that NDIS staff members’ knowledge of signing deaf people’s life experience was an area for development. Overall, signing deaf people’s consumer experience of the NDIS did not appear to meet their expectations.

Points of interest

• In Australia, signing deaf people can choose to be part of the new support system for disabled people - the National Disability Insurance Scheme (NDIS).

• Signing deaf people in this study liked the way the NDIS gave them information through their sign language, Auslan, however, when they wanted to get more detailed information - they could not find it.

• NDIS staff could develop their knowledge of signing deaf people’s life experience. Better staff knowledge can improve signing deaf people’s NDIS experience.

• The research shares signing deaf people’s experiences of the NDIS and adds to future research and better knowledge.

Keywords:

• NDIS
• signing deaf people
• Auslan
• life experience
• access

Note about terminology

The term deaf is used in this article as a single inclusive term as proposed by Kusters, De Meulder, and O’Brien (2017, p. 14): used when referring to all deaf people except for entities or where other authors have used a capitalised ‘D’ for theoretical concepts such as Deaf community or Deaf culture; acknowledging past times when there have been benefits and values connected with its use.

Introduction

Government support systems for disabled people have an avowed intention to remove disabling barriers and enable access. Understanding whether disabled people’s experiences of governmental support systems realise these aspirations is critical, offering a consumers’ experience of political and market forces in operation. This article explores the experience of the implementation of a model of individualised provision of services, implemented by a range of governments internationally (van Toorn 2021). Listening to these experiences can inform policy and practice for all disabled people and oppressed groups (Thill 2015). Limited access to various support systems has been experienced as, at the least, challenging - and, at the worst, dehumanising (Saffer, Nolte, and Duffy 2018). Research internationally has explored some key dimensions of such experiences. For example, research from the United Kingdom, has investigated the impact of changes in methods of delivering social support, such as the change to the welfare reform program in 2010 (Saffer, Nolte, and Duffy 2018) or of changes to assessment processes such as the Work Capability Assessment program introduced in 2008 (Morris 2013). Assessors are reported to lack knowledge about impairment, or indeed the experience of disablement (Saffer, Nolte, and Duffy 2018) and can act as street-level bureaucrats (Lipsky 2020) effectively performing as powerful gatekeepers to access. Assessments - as part of government service provision, and indeed informal judgement by the wider community, often appears to be based on an arbitrary, hierarchical system of worthiness, penalising deaf people or those with cognitive disabilities, who have no visible impairments (Kusters, De Meulder, and O’Brien 2017; Saffer, Nolte, and Duffy 2018). Some disabled people report that they can find themselves in a catch-22 situation (Saffer, Nolte, and Duffy 2018) where, paradoxically, their effective use of supports leads to them being deemed no longer in need of continued support (Morris 2013). While acknowledging the role that assessors play in influencing their clients’ success in accessing support programs, there has been a call for a better understanding of assessors’ work contexts; where they are seen to be overworked and ill prepared – suggesting that they cannot be held responsible for the shortcomings of the system (Saffer, Nolte, and Duffy 2018).

It has been powerfully argued that a key dimension of signing deaf people’s marginalisation and disablement is obstructed access to information and services (Lane 2002). Signing deaf people are reported to experience economic disadvantage because of structural forces that impede their access to educational and workplace opportunities (Clark et al. 2016; Marschark et al. 2005; Mayer 2007; Power and Leigh 2000). Researchers have quantified the economic disadvantage that flows from obstructed access and have called to address this imbalance through policy measures to provide increased access (Kim, Byrne, and Parish 2018). While access can improve a deaf person’s employment opportunities and quality of life, it can also prove critical in times of personal emergency, such as in hospital emergency wards (Tannenbaum-Baruchi, Feder-Bubis, and Aharonson-Daniel 2017) and in wider community crisis events, such as pandemics or bushfires, where access to real-time community announcements is vital (Deaf Australia 2013; WFD-EUD 2020).

In Australia, the introduction of the NDIS (Cth 2013) represents a change in the provision of services for signing deaf people: a change from a block funded, charity-based delivery to an individualised delivery, where the uptake and the implementation of support focuses on the individual as a consumer; the one who requests and receives the service (van Toorn 2021). Previous block funded provision - though operating within a charity model - had enabled a collective approach involving provision of generic services. Prior to the NDIS most, although not all, of these services for the signing deaf community were provided by traditional deaf welfare organisations (Carty 2018; Lane 2005; Mindess 1999). In contrast, the new individualised funding model means that signing deaf individuals are considered to be the experts on the living of their lives and make decisions about the services they need (NDIS 2021a). This change signals a shift in the framing of what it means to be a signing deaf person in Australia. To access the NDIS, signing deaf people are obliged to engage with a new system. This engagement calls for them to demonstrate independence and plan for their lives within the framework of their understanding of their deafness and the frameworks that exist in the wider community. These frameworks influence their lives - namely around their own and others’ views of deafness, cultural-linguistic status and disability (Mclaughlin, Brown, and Young 2004). Signing deaf people’s success in accessing this new system depends upon how well their views about the living of their life align (Calder-Dawe, Witten, and Carroll 2020) with the NDIS system. This paper reports on a study that explored signing deaf people’s experiences of accessing the NDIS to obtain a service package: a planned package of supports and services that they choose. Signing deaf people’s sharing of their experiences is an opportunity to inform the development of best practice in the delivery of this new service. The NDIS acknowledges that it needs to research all areas of its operations to work towards best practice delivery (Cth 2013) and it continues to measure its effect on the lives of Australia’s disabled people (Mavromaras, Moskos, and Mahuteau 2016; Mavromaras et al. 2018; NDIA 2018b; NDIS, 2019). Researchers have contributed to the knowledge around how the scheme functions by focusing on specific disability groups and individual disabled people. Initially, the research explored participants’ anticipation and expectations of the scheme, while later research reported on participants’ experience of the NDIS - noting the complex intersections that are in play when diverse people with diverse disabilities attempt to engage with a new system, potentially risking further marginalisation (Lakhani, McDonald, and Zeeman 2018; Soldatic et al. 2014; Thill 2015; Warr et al. 2017). In 2019, as a result of consultation with signing deaf community leaders, the NDIS introduced a Hearing Pathway (NDIS, 2019) to the NDIS participant disability groupings followed by an undertaking to better understand this client group.

Since the 1980s onwards, with the recognition of Auslan as a language and the rise of Australian signing deaf people’s cultural discourse, Australian signing deaf people have sought their right to access their wider community by demanding acknowledgement of their own ethnicity, culture and language (Carty 2018; Deaf Australia 2021). When disabled people seek inclusion to their wider community, they must, in some respects, accept their wider community’s framing of what is seen as their disability. This acceptance can mean that they are, in effect, buying into views and practices that could prove to be enabling, yet could also prove to be disabling (Friedner 2017). For signing deaf people, there is some apprehension that the NDIS could reframe their experience: moving from a primarily cultural-linguistic framing of deafness to one that acknowledges disablement. It has been reported that this could lead to cognitive dissonance for signing deaf people (Park, Fitzgerald, and Legge 2015) and create the situation of ‘Deaf dilemma’, as described by Lane (2005), where signing deaf people might adopt a specific label so they can be included in the provision of services. Calder-Dawe, Witten, and Carroll (2020) caution that tensions can arise if there is a lack of alignment between disabled people’s views about their lives and the wider cultural representations of their disability. More seriously, malalignment could compromise these participants’ access to services and provisions.

In Australia, many signing deaf people align themselves with other disabled Australians because they consider that factors within their wider community create barriers to access, which cause oppressive experiences, contributing to their experience of disablement (Baylies 2002; Oliver 1983, 1986). While many signing deaf people might consider that they are disabled through a lack of access to their wider community, they may also consider that they belong to a distinct cultural-linguistic group, which functions as a necessary source and facilitator of their wellbeing (Batterbury, Ladd, and Gulliver 2007; Deaf Australia 2021). Signing deaf people seek access to the solutions that are suited to their particular predicament to enable full participation (Park, Fitzgerald, and Legge 2015; T. Shakespeare 2008): access through their language and through their understandings of their particular ways of doing things. The NDIS offers signing deaf people this opportunity.

Capturing views of signing deaf people’s experience is important because it adds to the existing knowledge around the role that the NDIS is playing in signing deaf people’s lives. This knowledge can inform policy makers, academics from various fields and those who work within the disability community.

The introduction of the NDIS

The introduction of the NDIS demonstrates the Australian government’s compliance with the United Nation’s Convention on the Rights of Persons with Disabilities UNCRPD (UNCRPD 2006). This new approach to disability funding engages directly with participants; providing individualised support through a marketplace of participants and providers to enable the living of independent and inclusive lives (Cth 2013; Darcy 2015; van Toorn 2021). Known as individualised funding, this approach to disability funding, widely used internationally, offers participants an individualised budget in lieu of services and, in doing so, constructs participants as consumers (Cth 2013; van Toorn 2021). By mid 2020, the NDIS had offered a support plan to all disabled people in all regions of Australia (NDIS 2021b). For signing deaf people, the introduction of the NDIS was an opportunity to plan and achieve better control over their lives. The notion of being supported to live a life as one chooses has not always been available to Australian signing deaf people (Carty 2018) and so the introduction of the NDIS represents an exciting, yet critical time, in their history.

The context of signing deaf people’s lives before the NDIS

Before the NDIS, Australian signing deaf people lived their lives within the Australian community with varying degrees of control (Deaf Australia 2020). Central to their quest for autonomy is the status that others grant to their language: Auslan. Like other signing deaf communities, there is a consensus amongst Australian signing deaf people that this is their native language; necessary for successful first language development, for subsequent bilingual development towards English, and vital for the sharing of cultural and historical knowledge (Batterbury, Ladd, and Gulliver 2007; Deaf Australia 2021; Hauser et al. 2010). Over past years, Australian signing deaf people report that they have struggled to achieve self-determination (Australian Human Rights Commission 2013; Deaf Australia 2020; United Nations 1966). In Australia’s history, signing deaf people have enjoyed times when they have had a measure of control over their lives - non-deaf people have regularly displaced signing deaf people’s autonomy (Carty 2018). Following unsuccessful earlier attempts, signing deaf people established a national organisation: Deaf Australia, in 1986 (Deaf Australia 2020) . This achievement ensured that they had a platform to advocate for their own community in areas that affected their lives - areas such as the education of deaf children and improved access to wider society through their language, Auslan (Deaf Australia 2021).

Social inclusion for Australian signing deaf people

Piller (2014) posits that the attainment of inclusion for people can be viewed in a broad sense; a view beyond economic measures and employment status, to an approach that values the extent to which people can be involved in their wider community, which allows for their participation and sense of belonging. In Australia, members of the signing deaf community use Auslan with each other and are assured inclusion in these contexts because, through Auslan, access is naturally transparent and effective. However, when Auslan users attempt to access their wider community, barriers obstruct their access. This experience of limited access impacts their social inclusion and so some signing deaf people consider that they are disabled because they lack access to information and a range of services through their primary language - Auslan. The representative peak body, Deaf Australia aims to see the legal recognition of Auslan (Deaf Australia 2021). For Auslan users, accessibility means not an overarching universal solution but access in a form that is culturally appropriate and specially designed (Alper et al. 2015; Daoust 2017; Ellis, Goggin, and Kent 2015; Goggin and Newell 2007). For example, for deaf Auslan users, the availability of interpreters skilled in the communication pragmatics of Auslan is central to the realisation of their access to information and participation (Napier 2011). In addition, they can use various assistive technologies such as real-time captioning to allow more extensive access to everyday services and activities (Deaf Australia 2021; R. McKee 2011; Reagan 2010). Auslan interpreters can provide interpretation either live or through video platforms. If governments and other organisations adopt inclusive policies and practices, they can include access through Auslan, to ensure full access to everyday services. The NDIS is seen as a key vehicle for providing this access (NDIS 2021b).

Views of signing deaf people, their language and questions of disability

Knowledge around sign language and signing deaf people’s communities has influenced signing deaf people’s understandings of their deafness and also the understanding and views of others in their wider community. This knowledge has informed and influenced change for signing deaf people and their communities. Academic description of signing deaf people’s signed languages in the USA (Stokoe 1960) and subsequently in Australia (Johnston 1989, 2007) were pivotal in the recognition of their cultural-linguistic rights (Humphries 2014). Coupled with activism against the oppressions of non-signing deaf people’s dominant practices, signing deaf people themselves have led the evolution of views about signing deaf people. Beyond the broad view that disabling barriers within society cause the experience of disablement (Oliver 1983), academics have proposed that non-disabled people should seek a more nuanced understanding of disability by focusing on the lives that disabled people live; their cultural difference and their situated experience (T. Shakespeare 2001; T. Shakespeare 2013). Central to the evolution of views about signing deaf people and their lives is the fact that, despite other people’s influence over their lives at various times in history, signing deaf people have always reported that they know how they want to live their lives (Hauser et al. 2010; Ladd 2003; Lane 2005).

A human rights model of disability underpins the planning of the NDIS. This model moves from an anti-discrimination approach to a more rights-based approach wherein all rights are considered to include political, civil, economic and cultural rights (Degener 2016). However, a rights-based provision of services to disabled people needs to be delivered through what Davis (2013) terms a more informed consciousness. Through the implementation of the NDIS, there is an opportunity for non-disabled people to acknowledge alternative views around disabled people’s lives.

Academics from the field of Deaf Studies suggest that signing deaf people’s experience is better understood by non-deaf people when it is reframed away from a deficit view towards a notion of ‘Deaf Gain’. Deaf gain is when deafness is valued: in terms of intellectual, creative, and cultural benefits; recognising the physical, and cognitive differences as a vital aspect of human diversity (Bauman and Murray 2009, 2014). Researchers have called for an exploration of signing deaf people’s ontologies: their ways of being - to illuminate how they understand themselves within their world (Kusters, De Meulder, and O’Brien 2017). Signing deaf people claim that when they are able to use their knowledge about their particular ways of being, they can live well (Ladd 2005; Lane 2005).

In Australia, signing deaf people have lived through times where their experiences of disablement related to the varying degrees of control they had over the use of their language, Auslan (Carty 2018). Within the NDIS, disabled people are obliged to align themselves with the NDIS system. In the process of the introduction of the NDIS to signing deaf people, two paradigms are at play, and they will influence signing deaf people’s experience of the NDIS. The first paradigm relates to signing deaf people’s views of themselves and what constitutes a good life – this usually has a strong collectivist element (Lane 2005). The second paradigm relates to how they are viewed by others - for example, as individual disabled people (Thill 2015; van Toorn 2021). This second paradigm is to inform the design and processes of the NDIS. Batterbury, Ladd, and Gulliver (2007) propose that signing deaf communities can be compared to First Nation peoples who have experienced varying approaches to the provision of services that have focused on the delivery of services that meet individual needs as opposed to collective needs, contrary to their cultural ways of living and can be disruptive to the revitalisation and development of their indigenous community languages. Nevertheless, such groups find, although service provision appears to be focusing on their individual needs within their group, they still need to maintain their group struggle in continuing to address imbalances around the control of the education of their community and work towards more self-determination around decisions that affect the living of their lives (Batterbury, Ladd, and Gulliver 2007).

Research around the NDIS

The NDIS has been hailed by many to be one the most significant initiatives in Australia’s social policy history (Howard et al. 2015; Kendrick, Ward, and Chenoweth 2017; Thill 2015). Since the NDIS was passed in Law (Cth 2013), the NDIS has monitored its actions, as required by its governing body, the National Disability Insurance Authority (NDIA) (NDIA 2021). Since its developmental stages and the commencement of trial periods in 2014, research around the NDIS has focused on its planning, development and implementation (Darcy 2015; Kendrick, Ward, and Chenoweth 2017; Thill 2015) and its participants’ experiences; attending to the successes and challenges, as viewed by the clients within the various disability participant groups. Central to the NDIS client experience is the quality of the contact that occurs between the client and the government’s representatives. This contact, the engagement that occurs, plays a critical role in the delivery of the government’s disability support policy. In effect, the government’s representatives can act as the gatekeepers to the support that is available to the client; having control over what can be passed on further up the support request system (Lipsky 2020).

Researchers have made recommendations as to how the NDIS can better understand the multiple client groups and their participants’ unique profiles. Participants with intellectual and learning disability, as well as those with psychosocial disability, are represented in these discussions because there have been concerns around the effectiveness of the implementation of the NDIS for these client groups (Dowse et al. 2016; Perry, Waters, and Buchanan 2019; Ranasinghe et al. 2017; Smith-Merry et al. 2018).

Participants in the NDIS represent the broad spectrum of Australian society: a range of human, social and linguistic diversity. Researchers have called for the NDIS to acknowledge this diversity; to acknowledge the complex intersections that arise when marginalised participants plan to secure disability support through the NDIS (Soldatic et al. 2014). For example, specific language and cultural groups have been consulted by the NDIS to allow for appropriate pathway development (NDIS, 2019). The NDIS has consulted with the signing deaf community through their peak body, Deaf Australia (Deaf Australia 2021; NDIS, 2019). Signing deaf people’s experiences of the NDIS can inform understanding of their participation in the NDIS. This will add to stakeholders’ knowledge - stakeholders from the areas of policy development, academia and those who work with and live within the disability community.

Method

This study adopted a qualitative design, taking an Interpretative Phenomenological Analysis (IPA) approach (Larkin, Watts, and Clifton 2006). Ethics approval for this study was granted by the relevant Human Research Standards Committee.

I invited members of the Sydney signing deaf community to participate in a focus group for a pilot study, which would inform a later research project, to discuss their experience of accessing and navigating the NDIS to obtain a service package. Participants were included in the study if they were signing deaf adults between the ages of 25 and 65, who used Auslan, considered Auslan to be their primary language, and had been successful in obtaining an NDIS service package. I am a non-deaf woman from a non-deaf family with a history of working with signing deaf people in educational and academic settings. I am a qualified teacher of deaf children and have certified, conversational Auslan skills. I have always used the support of qualified Auslan interpreters when working or researching with signing deaf adults. My past scholarly work has focused on Auslan; its value in bilingual education for signing deaf people’s education and wellbeing (Treloar 1985). For this project, I liaised with The Deaf Society in Sydney. The Deaf Society’s interest and support was invaluable, and I believe their support was offered because key staff members knew my supervisor for the project, who is an academic in Deaf Studies and a prominent member of the Sydney signing deaf community. This community connection served as a valuable introduction to the Deaf Society, the community and the participants of the study (Fernandes and Myers 2010; Kusters, De Meulder, and O’Brien 2017; M. McKee et al. 2012).

The Deaf Society agreed to publish the recruitment advertisement via The Deaf Herald (Deaf Society, 2018), which is the Deaf Society’s news and events platform. The advertisement comprised a video of a signed Auslan presentation and an English text. It was distributed via The Deaf Society’s website and Facebook page.

Four participants participated in the focus group. For IPA, to achieve a suitable personalised and trusting environment, it is considered that four to five participants is an ideal number (Smith, Flowers, and Larkin 2009).

The three overarching questions included:

1. How did you find out information about the NDIS?

2. Tell us about your experience? Did you find the information that you needed?

3. Tell us about your perceptions of your experience.

During the focus group sessions, I asked the questions in English and then an Auslan interpreter interpreted the questions into Auslan. The participants’ comments were interpreted from Auslan to English throughout the session. The discussions were audio recorded then later transcribed into English and uploaded to NVivo software for analysis. The design constraints of this preliminary research project did not allow for best practice methods for research with signing deaf people where co-production, member checking or back checking from the participants or members of the signing deaf community are used to check that data resonated with the participants’ view of their experience. To mitigate the dangers of lost nuances of communication and consequent misrepresentation (Kusters, De Meulder, and O’Brien 2017; Napier and Leeson 2016; Young and Temple 2014), my supervisor reviewed the English transcription of the interpretation of the focus group session and provided insight for the resulting themes that emerged from the data. Emerging themes were noted, and thematic coding was used to organise the data into various categories (Creswell 2017).

Results

The emergent themes were needs, barriers and feelings. Many of participants’ accounts concerned aspects such as challenges when finding out about the NDIS system, navigating the system, efforts to engage with NDIS staff members and strategies used to succeed within the system. I explored these themes to understand these four participants’ lived experience of accessing the NDIS.

The theme of needs

For these participants, the experience of accessing the NDIS to obtain a service package involved a preoccupation with having needs met. The initial process of planning to have their needs met, for most, proved difficult. Fundamentally, this was evident within a constant context of seeking to have needs met: the planning of needs, the negotiating of needs, the meeting of needs, the review and then renegotiation of needs (NDIS 2021b). The participants had questions they needed to have answered. Questions centred around finding out about the NDIS: What is it? What to do? How to do it? These questionings continued throughout their experience with the NDIS—a system that was new and challenging. However, the word ‘needs’ represented another meaning within the context of the NDIS negotiations. In the NDIS, needs are viewed in terms of support: support for personal care, for community participation, and for the workplace. These specific supports, if deemed reasonable and necessary because of a person’s disability, represent the things that enable them to live like everyone else (NDIA 2017). Typically, people in the wider community may access a new service they need via the Internet. Signing deaf people use the Internet to find out about a service, as most people do. One participant described their experience: ‘I googled the Internet and went through the NDIS website. They had some information, but it’s very vague. It still wasn’t clear to me.’ Another participant explained, ‘So really what happened was, because I couldn’t get in to register, I then went further into the Internet base. It was very basic, really, because the information that was on the Internet really wasn’t very—with any depth. So, it was a matter of just waiting to see’. Another commented, ‘Because it was something new, it was just a case of waiting for the information to get out’. Understanding the processes of the NDIS was expressed as challenging. The participants mentioned that, because the information was lacking or was not clear, much discussion started to circulate within the signing deaf community. Community discussion is a cultural practice within signing deaf communities and can be informative and empowering for community members (Lane 2005). These participants acknowledged the role that the Deaf Society played in supporting the introduction of the NDIS by offering information sessions to its community. ‘So, The Deaf Society actually started to give information sessions to make the comfort [sic] of the people who were listening to the rumours.’

Participants expressed that they needed to find procedural information about the system, but found it difficult to access. When the participants received a plan, they lacked knowledge about the next processes: the use of the plan and the possibility of review of the plan. Two of the participants shared their experience which seemed to follow a similar pattern of not understanding the review process and the fact that, if one changes plans, the NDIS reclaims the money. Reclamation of unused funds is a procedural fact that had not been made clear to these participants. The resulting sense of confusion and frustration was evident in their accounts: ‘I’ve got no idea why they didn’t tell me…But, of course, [if] you don’t use it, you lose it. So, I had so much money that just went out of my package, and I couldn’t use it.’

Participants expressed a need to practise patience and understanding; appreciating that the implementation of the NDIS is a challenging task for the NDIS staff, themselves, to understand and administer: ‘Really, with the NDIA it’s an organisation without any training in regard to the various disability sectors and everybody’s new. It’s a new organisation; everyone’s had to fill all these seats…You’ve got these people who are trying to follow a criteria [sic] that don’t have the experience, and they don’t know. Some of them don’t even have any disability experience.’ This comment gives a very generous perspective on the effectiveness of delivery for the NDIS. This participant evidently had a low expectation of the level of service, which may have influenced his perceptions of his experience. This low expectation and sense of empathy for the challenge that the provider, the NDIS, is facing is at odds with broader societal consumer expectations and does not align with the aims of the NDIS, which state that their clients have the right to live just like everyone else (NDIS 2021a).

Needing to ask for supports through the local area coordinators

Often participants’ reflections centred around the actual meeting with the Local Area Coordinator (LAC), the person who plans their service package with them. It is at this meeting that the client puts forward their proposed plan. The client submits their request for supports and services and the LAC discusses the submissions with the client - providing some indication of the likelihood of acceptance by the NDIS. The participants reported that when they met with the LAC, the level of engagement was less than ideal. It was reported that the LAC often lacked knowledge and understanding about the experience of deafness, and the implications of living a full life as a signing deaf person. One participant shared an experience about a family she was assisting to apply for a plan: ‘Because they live with hearing people, it’s the assumption with the LAC that the hearing person will do everything for them. But they need to be able to see [when someone is at] their front door, and they need to know when things are dangerous, so that’s what the discrepancy is. They [the friends] spoke to me and just sort of said, ‘The LAC told me that we didn’t need it.’’ One participant shared: ‘…because they had no idea about the needs of a deaf person I just sort of felt like I was wasting my time trying to explain all that.’ These comments reflected a lack of understanding on the part of the LAC about the specific needs of signing deaf people. The sense of being ‘at the mercy’ of the ‘powerful’ LACs is shared with a summary of the problem as seen by one participant: ‘So they don’t even know how to access information about the signing deaf community, and yet they give recommendations that they have no idea about. So how can they say to someone, well you don’t need a flashing light, you don’t need this, you don’t need interpreters, you don’t need to learn sign language.’ Participants’ comments about their experience of their meeting with their LAC reflect frequent breakdowns in exchanges between the NDIS frontline service providers and their clients. The clients requested the supports they had decided they needed because of their situated experience of disability. The LACs failed to fully engage with their clients and so denied their requests because they were unable to understand their clients’ justification for requested supports.

The theme of barriers

The second theme concerned the existence of barriers. During the focus group session, I did not introduce the word ‘barriers’ or use it as a prompt, however, it appeared in the language used by the participants. When the participants shared their experiences about the processes that they had followed in obtaining a service package, two main themes concerning barriers emerged: the general lack of information available to them as consumers, and their experience of the role of the LAC. Ideally, a signing deaf person should be able to get access to the NDIS and obtain information independently, without the assistance of other support people. Provided the details can be accessed through Auslan and there are technologies to assist access, contact could be achieved through the Internet via the NDIS website, where Auslan information videos have been uploaded (NDIS 2018), or email, by phone through the National Relay Service, Skype or interpreter. For the majority of these participants, the NDIS was not as welcoming and accessible as it perhaps could have been. When they first engaged with the NDIS system, the depth of detail that they needed was not available.

One participant shared how she responded to the information on the website when it was vague or lacked depth: ‘In one way that was good because I could just interpret it to suit me. So, there was enough ambiguity, enough unclearness for me to be able to say, ‘Well, the way that you’ve written is the way that I’ve interpreted.’ The participants reported that the provision of access through Auslan was satisfactory during meetings, provided there were interpreters. However, they expressed a need for more detail and depth of information through Auslan on the website, so that they could find information by themselves.

The barrier effect of the local area coordinators (LACs)

The role of the LACs appeared to function as a barrier to access for these participants. The LACs were sometimes seen as creating a barrier to access that, in effect, controlled the participants as they attempted to move through the NDIS system. The barriers could cause delays, which caused a sense of confusion and frustration. It appears that some LACs lacked knowledge about their system: what supports could be requested and what couldn’t. One participant explained, ‘Then they, the LAC, will say, ‘Oh, I don’t know whether you qualify for that, I’ll have to ask.’ So, you feel like it’s an endless attempt sometimes to try and have an interview. So, it’s an ongoing barrier, of course.’ One participant added, ‘[J]ust say I say that I have a need for … and then you were telling them, and they don’t understand the specific needs. Sometimes they make the decision that it’s not important.’ One participant summarised this concern regarding the level of understanding of the LACs: ‘But their knowledge is very basic, they don’t understand the different … and they just have a schema of what they think that a deaf person would require. If it doesn’t fit in within their schema, then the deaf person misses out because it’s not being considered.’ There was a ‘hard to believe but true’ moment shared by one participant: ‘They don’t even understand about the fact that we can’t hear, and we can’t talk.’ There was agreement among the group that this can be an experience - the invisible disability effect - for many signing deaf people. Some of them don’t even have any disability experience.’ The LACs’ lack of understanding affected their ability to relate to and engage with their signing deaf clients. One participant summed up the whole process of preparing and receiving his first plan: ‘No, when I went to the interview from [sic] the LAC, it was just so heart-wrenching. You just felt like you were being ignored, and it was just a protocol. Then when I got my plan, can I say, it was crap!’

Strategies to forge a way

The participants for this research project were included in this sample because they had successfully navigated the NDIS to obtain a service package. Participants indicated that they did feel that they had improved in their ability to navigate the system; some citing strategies they had adopted or planned to adopt to forge their access to success. One participant anticipated: ‘So, I’m sure with my next plan it will be better. That’s my strategy, you learn from somebody else’s plan, and you hope that it will help your plan.’ This participant’s strategy is one that is culturally familiar to him: seeking solutions and finding answers through the signing deaf community collective (Lane 2005; Mindess 1999). One of the participants shared that she had a way of dealing with this problem: ‘So, I chose to ignore the LAC, and I can argue my case, and I’m assertive. So, a lot of people don’t have that confidence. So, if I’m booking things and I get caught, well, then I’ll take that risk. So that’s a risk that I decided to take because I am self-managed. It fits my goals, and I can argue that case, and so I have no hesitation.’ This client is expressing to the group and the researcher her competence and confidence. One participant shared a strategy that she has adopted: she expressed her relief in finding someone in the system who could assist her, and work with her to provide the most appropriate access: ‘So, now I’ve just got that new person who understands deafness, so I’m going to contact that OT (Occupational Therapist) and see whether she can come.’ It appears that the OT to whom she refers could support her because she had the appropriate skills and understanding to bring to the planning meeting for this signing deaf woman. One participant suggested that the recruitment of deaf people by the NDIS could improve the signing deaf consumers’ access. The NDIS has an inclusive recruitment policy and values the consultative role that disabled team members can play for other members (NDIA 2018a), however this participant viewed her experience with a hearing LAC as a ‘lost opportunity’.

Feelings about accessing the NDIS

The participants in this focus study reflected on their experiences of obtaining a service package and shared their reflections with the group. Some participants indicated that they felt that it was a good experience; others felt challenged. Some participants referred to others they know in their community who felt too overwhelmed by the prospect of the challenge, and so didn’t seek to access the NDIS. Some reported that they felt obliged to help those who had given up on the challenge.

There were discussions about how their community is a great sharing environment to find out how the NDIS has worked - or not worked - for particular individuals. Participants shared that the feelings reported in these exchanges within their community reflected an excited ‘lottery’ effect: those who were the winners! ‘Then some people are saying, ‘Well, I only got this’. Somebody else would say, ‘Oh, but I got more than that’. However, in addition to those who experienced the excitement of engaging successfully with the NDIS, there were others who did not experience successful engagement and so perhaps did not choose to volunteer to participate in a focus group. These participants’ experiences have not been noted in this study and perhaps some have experienced feelings of disappointment, jealousy and injustice, and possibly even failure: a failure to access and navigate this new system.

Some indicated that they felt responsible for others they knew, who might have been eligible for a service package but did not appear confident to engage in the process. This demonstrated their cultural, collectivist concern. One man told of his wife, whom he believed needed his assistance. ‘If it becomes too hard, she won’t do it, so I have to come to her rescue and try and help her, and so that’s not fair either.’ When asked how she feels about this, he replied, ‘She’s just so used to it - even with all her growing-up years, she’s always encountered barriers, and so she just sort of knows already. She’s very disappointed, but that’s been her life. So, it makes life a bit easier for her so that she doesn’t feel like she’s encountering barriers all the time. So, if I assist her, it just makes things a little bit more smoother [sic].’

Others felt responsible for their partners or friends if cultural factors affected their ability to access the NDIS. The reality of the complex nature of the lives of signing deaf people, people who come from diverse ethnic backgrounds, is shared. One participant explained: ‘But then I was contacting other [from same immigrant group] signing deaf people, and they had no idea what it was all about. So, then I went out, and I was helping other people who didn’t know anything about it as well.’ This participant’s efforts highlight a sense of obligation to help others; those who cannot access the system, because of the disabling factors they face; further complicating factors caused by the impact of their diverse cultural and linguistic background. This feeling of responsibility is further explored by another participant: ‘For my husband, he’s from another cultural background as well, so he tends to put his tail between his legs. So, all through my marriage, I’ve tried to encourage him to be independent. However, I realise that the NDIS is very complex, and I can’t leave him isolated. It’s not fair, and it’s too risky as well.’

When the participants reflected on the early stages of the process of obtaining a service package, there were strong feelings of frustration and disappointment that had stayed in their memories, such as the well-rehearsed, polished anecdote (Metcalfe 2013) that shares a story of where things went wrong. For example, one participant recounted the story about when her LAC misplaced her application; an application that had been carefully considered and prepared. To assist the LAC, the participant presented a spare copy that she had brought with her. The participant recounts: ‘Then, she just said: can I then explain it all to her. Then I sort of thought, well, hang on, I would rather that she use the opportunity to read that application. Like, why have I got to explain it? There were a lot of things, I have to say, that was [just] in that application that I didn’t remember, all because she wouldn’t take the time … which made me very disappointed.’ This participant’s story expressed her feelings at the LAC’s disregard for the importance of her written application and the effect of this disregard on her as a participant. The LAC’s disorganisation and a lack of understanding about this participant’s situation and preferred ways of presenting her requests for her plan caused stress and disappointment for the participant. The LAC didn’t understand that presenting a case; supporting one’s personal view about their goals and associated needs, is not necessarily part of a particular signing deaf participant’s skill set. This participant found the situation disheartening and felt that she was placed in a disadvantaged situation. For this participant, her recount of her well-rehearsed story reflects her feelings of regret and disappointment about her experience of what had been her planned, yet fractured, attempt to access her NDIS funding.

Discussion

These participants shared their experiences - from the first knowledge of new government reform to the preparation and planning stage, attending meetings with LACs, to perhaps a review, renegotiation or renewal of a plan. Some stories contained glimpses of success and achievement, while others revealed struggle and disappointment. The data revealed the participants’ challenges when applying to the NDIS: seeking information, filling in forms and creating plans - justifying themselves every step of the way. Barriers confronted these clients at every turn, from the shallow pool of information in Auslan on the Internet to the LACs’ lack of skills and knowledge about their role and about the lived experience of their signing deaf clients. These participants shared their reality - that the task of preparing a written English document for their application or being pressured to give an impromptu presentation was not their preferred way of doing things. Some could cope with the challenges; adapting their strategies to navigate the system with assertiveness and ease even to allowing sufficient reserve to reach out to those on isolated islands (Abascal et al. 2015). There were those, perhaps, who were more vulnerable; those of other ethnic backgrounds who appeared to be at risk of ‘missing the boat’. Then there were the fellow community members who also needed help: those who showed signs of dejection, unable to take the first step, tired of what has been a lifelong pattern of confronting barriers, and now feeling powerless from the cumulative effects of the pressure to continually fit in with the normalising expectations of the more powerful (Breivik 2005).

Conclusion and recommendations

The signing deaf people in this study shared their experiences in accessing the NDIS to obtain the support they need to live their life. From a provider’s perspective, the process of providing equitable access needs to start by engaging with the client and, at least, having knowledge about a client’s participant group profile and, at best, an understanding of their client to foster a sense of working together to ensure real equity of access (Levesque, Harris, and Russell 2013; Tschirhart, Nosten, and Foster 2016). To work towards improved engagement with signing deaf people, there is an opportunity to look for the experiences that signing deaf people share about accessing the NDIS: experiences that assert that, at any time, access to the wider society, through Auslan, depends on people’s and organisations’ attitudes to the provision of rich, detailed information through Auslan; that what signing deaf people share can inform us about their lives, their ways of doing things and the importance of understanding that when they plan and explain that they need something - they do. Signing deaf people share some of the experiences of other disabled people who are part of the various client groups of the NDIS. Some of these shared experiences are around access to information and successful engagement with the government’s representatives who ultimately control access to support and funds (Lipsky 2020). However, beyond engagement and navigational concerns, signing deaf people’s experiences reflect problems that relate specifically to their preferred methods of access to the information and services of the NDIS and others’ understanding of how these participants would like to live their life.

Experiences they share can offer ideas for a best practice scenario: these participants argued that the employment of signing deaf people as NDIS team members who can work and plan with them would be beneficial because they could be from their own community and so would know the barriers that may exist for them and be more likely to understand how most signing deaf people prefer to do things.

Currently, the NDIS is working towards a better alignment with its signing deaf clients. For better outcomes, there needs to be an alignment between how the NDIS service is delivered to its clients so that signing deaf people can access the support they need. Signing deaf people’s stories around the implementation of this new social policy reflect the impact of this policy; measurable through its embodiment in their everyday lives (Matthews and Sunderland 2017). Full engagement with signing deaf people will facilitate a shared understanding of their range of lived experiences. The implementation of the NDIS is an opportunity to work towards best practice and listen to the experiences of all the new and diverse users of this scheme.

Acknowledgements

I would like to thank Dr Breda Carty and Associate Professor Nicole Matthews for their insightful discussion and feedback during the preparation of this paper. I would also like to thank the participants of the focus group who shared with me their experiences of accessing the NDIS.

Disclosure statement

No potential conflict of interest was reported by the author.