Rural and remote speech-language pathology service inequities: An Australian human rights dilemma

Abstract

Access to healthcare is a fundamental human right for all Australians. Article 19 of the Universal Declaration of Human Rights acknowledges the right to freedom of opinion and to seek, receive and impart information and ideas. Capacities for self-expression and effective communication underpin the realisation of these fundamental human rights. For rural and remote Australian children this realisation is compromised by complex disadvantages and inequities that contribute to communication delays, inequity of access to essential speech-language pathology services and poorer later life outcomes. Localised solutions to the provision of civically engaged, accessible, acceptable and sustainable speech-language pathology services within rural and remote Australian contexts are required if we are to make substantive human rights gains. However, civically engaged and sustained healthcare can significantly challenge traditional professionalised perspectives on how best to design and implement speech-language pathology services that seek to address rural and remote communication needs and access inequities. A failure to engage these communities in the identification of childhood communication delays and solutions to address these delays, ultimately denies children, families and communities of their human rights for healthcare access, self-expression, self-dignity and meaningful inclusion within Australian society.

Keywords:

• Article 19
• Universal Declaration of Human Rights
• United Nations
• Australia
• civic engagement
• inclusion
• rural and remote
• service-learning
• speech-language pathology

Access to healthcare is a fundamental human right for all Australians (Australian Commission on Safety and Quality in Health Care, 2008). Article 19 of the Universal Declaration of Human Rights (United Nations, 1948) stated “everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas.” Capacities for self-expression and effective communication underpin the realisation of these human rights. For rural and remote Australian children this realisation is compromised by complex geographical, socio-economic, educational, cultural and healthcare inequities and disadvantages (Standing Council on Health, 2012).

One-third of Australia’s 23 million citizens reside in rural or remote locations (Australian Bureau of Statistics, 2014). These people live in towns, communities and isolated locations that can experience limited access to healthcare services, including allied health services such as speech-language pathology (SLP) (Spiers & Harris, 2015). Contextual and service access factors such as; geographical isolation, lower socio-economic status of populations and health workforce shortages, can contribute to systems failures to respond to civic calls for early engagement to address childhood developmental delays (Jones, McAllister, & Lyle, 2016a).

Whilst there may be cause to celebrate the 70th anniversary of the Universal Declaration of Human Rights (United Nations, 1948), urgent action is needed to address communication delays and continuing SLP access inequities confronted by children, specifically rural and remote Australian children. A failure to address this human rights dilemma will further marginalise children from their fundamental human rights for healthcare access, self-dignity, self-expression, individual and collective worth. The maintenance of this inequity and resultant disadvantage contributes to the exclusion of these children from their right to be valued community members and Australian citizens.

The well-being of Australian children is a central tenet of policy making and children are described as the key to Australia’s future. The best possible start in life is central to Australian health, education and social agendas (Australian Institute of Health and Welfare, 2009). However, rural and remote children are more likely to experience developmental vulnerabilities on entry into school than their metropolitan counterparts (Australian Early Development Census, 2015), have limited access to SLP services (Spiers & Harris, 2015) and experience poorer life outcomes (Australian Institute of Health and Welfare, 2015). For many Australian families, this inequity of access to essential childhood services can be intergenerational (McLachlan, Gilfillan, & Gordon, 2013).

Access to timely services has the ability to improve developmental outcomes for children (Early Childhood Intervention Australia, 2010). However, children raised in rural and remote communities can experience limited to no SLP service access, undermining responsive, adequate and impactful healthcare delivery. These children are at greater risk of experiencing unidentified and untreated communication delays that impact their capacity for educational engagement, further limiting their opportunities to break cycles of poverty and disadvantage (McLachlan et al., 2013). Children entering school with limited capacity for school-based learning experience lower levels of academic achievement and are at increased risk of teenage parenthood, mental health problems, committing criminal activity and poorer employment outcomes (Australian Institute of Health and Welfare, 2009).

Researchers describe the later life impacts of undiagnosed and untreated communication disorders (Snow & Powell, 2012). A high proportion of young Australian offenders, in one study up to 50% of a community sample of young male offenders, were found to have had a clinically significant, but previously undetected oral language disorder resulting in higher risks of long term disadvantage (Snow & Powell, 2012).

The marginalisation of rural and remote children from education can commence early in life, specifically within classrooms, where children can experience difficulties with language, literacy and interpersonal demands (Snow & Powell, 2012). Even if these needs are identified early rural and remote families can experience significant delays in access to services for their children (Early Childhood Intervention Australia, 2010).

Despite rural and remote healthcare being a focus of Australian policy for decades (Humphreys & Wakerman, 2009) and a recent Senate Inquiry into the prevalence of communication disorders and SLP access (Commonwealth of Australia, 2014) the foundational developmental needs of children, including communication, speech and social skills acquisition, continue to be neglected. New approaches to how these needs are identified and solutions designed are required.

There is no better time than this 70th anniversary of the Universal Declaration of Human Rights (United Nations, 1948) for health and education sectors to take action on how they engage with rural and remote communities to ensure children have access to essential SLP services. That is, the delivery of the right services, in the right place, at the right time and by the right SLP professionals, those who understand rural and remote contexts, healthcare barriers and community expectations for enhanced life outcomes for their children.

Civically engaged healthcare

Meaningful engagement with rural and remote communities in addressing complex childhood communication delays and SLP service inequities can promote the alignment of service to community needs and contexts and the development of acceptable and sustainable healthcare (Aragon & Garcia, 2015; Jones et al., 2016a). However, designing civically engaged and responsive SLP strategies can be complex. The provision of civically engaged health services involves interactions with complex social systems. Ambitious population health strategies require solutions that are more than evidence-based, solutions must reflect the unique local circumstances of communities to be impactful and sustainable (Aragon & Garcia, 2015). This indicates that local communities must be engaged in the design, implementation and adaptation of their healthcare strategies.

Civic engagement is the process of working collaboratively with or through people who are connected by their geographical contexts, areas of interest, or shared circumstances. Engaged communities work collaboratively to address health inequities that impact on the wellbeing of their residents. Civically engaged healthcare recognises that those affected by healthcare decisions have a right to be involved in decision-making processes and actively contribute to their healthcare agendas (Centers for Disease Control, 2011). However, current approaches to healthcare delivery have been critiqued for being transactional in nature (Bowen, Newenham-Kahindi, & Herremans, 2010), with power and control firmly located within healthcare systems.

Political, professional and power interferences that act to exclude communities from their healthcare agendas need to be overcome. Politically, Australia lacks a national strategy for civically engaged healthcare, contributing to limited health sector accountability for engagement approaches and outcomes (Hyett, Kenny, Dickson-Swift, Famer, & Boxall, 2014). Professionally, health sectors need to engage with civic society in decision-making (Ansari, Phillips, & Zwi, 2002). However, bringing communities and professionals together is not an easy process. Health service strategies that ignore community capacity to solve their health inequities can exacerbate these inequities by focussing on the services provided in preference to strengthening community capacity (Ansari et al., 2002). Civically engaged healthcare can profoundly disturb fundamental power constructs of professional identity, knowledge expertise, and the rules that govern how health professionals interact with service recipients (Dunston, Lee, Boud, Brodie, & Chiarella, 2009). However, civic engagement of rural and remote communities is considered central in ensuring acceptable and effective responses in tackling entrenched inequities (Kenny, Hyett, Sawtell, Dickson-Swift, Farmer, & O’Meara, 2013).

Rural and remote communities can be further marginalised from their healthcare agendas through literature that focuses on the need to develop civic leaders, with the perception that “the quest for effective leadership in rural areas is arguably the greatest challenge facing rural communities” (Avant, Rich-Rice, & Copeland, 2013, p. 53). For those who live and work in rural and remote Australia, there is a strong recognition of the presence and importance of community leaders. Enabling rural and remote voices to be heard in their healthcare agendas, the effective interpretation of these voices and health sector capacity to respond appropriately may be the greatest challenges confronting these communities and their healthcare providers.

Communities can display high levels of cynicism towards new healthcare strategies designed by external agencies with limited insight into past failings of such strategies. There are examples of health systems that fail to apply their resources and expertise to strategies that seek to address the social determinants of health and institutionalise healthcare arrangements, creating financial and geographical barriers, further alienating disadvantaged groups (Gilson, Doherty, Loewenson, & Francis, 2007).

Rural and remote communities already struggling to address the needs of their children and SLP inequities may have witnessed promising solutions come and go without any substantive and sustainable change (Miles, Espiritu, Horen, Sebian, & Waetzig, 2010). A prolonged focus on defining community deficits in preference to acquiring a deep understanding of existing assets and how best to mobilise them, can marginalise communities from solutions focussed strategies (Bourke, Humphreys, Wakerman, & Taylor, 2010). Learning how to engage with communities offers the potential to build on local capabilities, facilitating the role of communities as co-producers of their healthcare (Morgan & Ziglio, 2007).

Yet, the Australian National Health Literacy Statement indicates that health professionals should “assume that most people will have difficulty understanding and applying complex health information and concepts” (Australian Commission on Safety and Quality in Health Care, 2014, p. 2). Of concern is the expanding focus of health policy on improving the health literacy levels of individuals in preference to addressing the multiple inequities and disadvantages that contribute to poorer health outcomes. Investments in educating people to make decisions that can improve their health when the environments in which they live do not support the attainment of improved health outcomes can result in weak and short-term effects (Sallis, Owen, & Fisher, 2008). The contextual realities of rural and remote communities, while undermining childhood communication and literacy attainment, can be exacerbated by policies that contribute to ethical dilemmas. The burden of enhanced health literacy for communities as a means to improve health outcomes, without addressing the causal factors that contribute to service inequities and poorer health, is one example of how health policies can contribute to such dilemmas.

A new lens is required, one that must improve the community literate insights into health sectors (Jones, McAllister, & Lyle, 2016b). When health sectors and professionals acquire a deeper understanding of people and place they are better located to develop contextually responsive health policies and practices (Moore, McDonald, McHugh-Dillon, & West, 2016). However, the education of health professionals has been described as failing to overcome dysfunctional and inequitable healthcare systems because of outdated and static curricula and insufficient adaptation of professional practice to local contexts (Frenk et al., 2010).

SLP students in rural and remote contexts

Health workforce education efforts must focus on increasing the quantity, quality and responsiveness of future providers (World Health Organization, 2011) if they are to meet the needs of diverse Australian populations. Exposing pre-registration SLP students to rural and remote contexts, alternative healthcare models and the complex challenges that influence service access and delivery is critical (Spiers & Harris, 2015). In seeking to reform how we educate this workforce, strategies for change must be informed by community experiences and expectations of SLP services and evaluated on how well they meet these expectations (World Health Organization, 2011).

Alternative healthcare approaches have been employed to address service inequities in rural and remote locations, such as telehealth models. Whilst evidence exists on the importance of a clinical vision and purpose for telehealth and clinician and management ownership of these services (Bradford, Caffery, & Smith, 2016), limited evidence exists on: the role of communities in the codesign of these alternative services; service capacity to adapt to current and changing community needs; the depth of relationships between external service providers, local services and communities; and whether communities feel a sense of ownership and control of these services (Bywood, Raven, & Butler, 2013). Healthcare that lacks face-to-face interactions can be considered a second best option for rural and remote service recipients and providers (Bradford et al., 2016; Fairweather, Lincoln, & Ramsden, 2017). In the absence of face-to-face services, individuals, families and communities can feel obliged to accept healthcare alternatives despite preferring direct interactions and engagement with their healthcare providers (Bywood, Raven, & Butler, 2013).

Community engagement is increasingly being positioned as a significant sector of Australian higher education institutions alongside the educational goals of teaching, learning and research (Bernardo, Butcher, & Howard, 2014). While community engagement is considered to be core business for these institutions as a means to contribute to civil society, promote access to authentic learning experiences for students and socially accountable research agendas, it is yet to receive sufficient recognition. Within rural and remote Australian contexts, university departments of rural health, key stakeholders in rural and remote health service design and workforce development (Mason, 2013), are investing in the formation of civically engaged community–campus partnerships and SLP service-learning programs (Jones et al., 2016a; Sessa, Grabowski, & Shashidhar, 2013) as an alternative approach to addressing service inequities, educational reform and workforce shortages. Since the inception of these Australian innovations in 2009, over 1000 rural and remote children have received services from over 200 SLP students. These SLP students have been exposed to alternative, civically engaged and schools-based models of healthcare delivery. While these initiatives draw on the principles of civically engaged healthcare (Moore et al., 2016) and service-learning (Sessa et al., 2013), there is a need to elevate our understanding of how they are located within the human rights discourse.

Rural and remote Australian community–campus partnerships and SLP service-learning evidence has identified the importance of community leadership in the design and adaptation of service and learning components. The commitment from communities to work collaboratively on developing solutions to address complex SLP inequities cannot be underestimated (Jones et al., 2016a). There is an increasing recognition that health is socially determined and that health issues are best addressed through the engagement of community partners, partners that bring their own perspectives, experiences and understandings of community life and health issues to healthcare strategies. Approaches to health improvement must take into account community concerns if they are to benefit populations (Centers for Disease Control, 2011).

A growing body of evidence is informing us that we can alter the rural and remote Australian SLP landscape through local, meaningful and respectful partnerships with these communities. The challenge is whether health sectors have the appetite to engage in these partnerships to address this human rights dilemma. Children, regardless of their place of residence, should have every opportunity to realise their fundamental human rights for healthcare access, self-expression, self-dignity, individual and collective worth. We all have a role to play in ensuring the social inclusion of all children and their right to be valued community members and Australian citizens.

Declaration of interest

There are no real or potential conflicts of interest related to the manuscript.

Acknowledgements

The authors acknowledge rural and remote Australian community agencies and university departments engaged in community-campus partnership and speech-language pathology service-learning innovation. The authors acknowledge Veronica Barlow for her editorial assistance.

Additional information

Funding

The Broken Hill University Department of Rural Health is funded by the Federal Department of Health, Australia.