A Systematic Review of Services to DHH Children in Rural and Remote Regions

A Systematic Review of Services to DHH Children in Rural and Remote Regions Abstract Children in regional, rural and remote areas have less access to services than those living in urban areas. Practitioners serving children with a hearing loss have attempted to address this gap, however there are few studies investigating service access and experiences of non-metropolitan families and professionals. This systematic review evaluates the literature on service provision to children with a hearing loss living in regional, rural and remote areas of Australia. A search of five databases, the gray literature and a prominent author located 37 relevant documents. The journal articles were rated for quality and the findings of all documents were themed. The evidence from this review indicates that children with a hearing loss living in regional, rural and remote Australia experience reduced quality and frequency of service. Further investigation is needed to identify the accessibility and suitability of services for children with a hearing loss in non-metropolitan areas. People living in regional, rural and remote (RRR) Australia consistently have poorer health and educational outcomes than those living in major cities (Baxter & Hayes, 2011). The definition of regional, rural and remote varies between organizations and countries. For the purpose of this review, classifications have been based on the Accessibility/Remoteness Index of Australia (The University of Adelaide, 2016). A major city is considered to be a center with a population of 250,000 people or more, with remaining centers classified as regional, rural and remote (RRR) (The University of Adelaide, 2016). In Australia, one-third of the total population lives in RRR areas (Australian Bureau of Statistics (ABS), 2014). As people live progressively further away from a major city, there is a corresponding decrease in life expectancy and an increased rate of disease (Australian Institute of Health and Welfare (AIHW), 2014). In Australia, the proportion of people with disabilities is slightly higher in outer regional (14%) and inner regional (15%) areas than those in urban centers (12%) (AIHW, 2015a). A higher proportion of Aboriginal and Torres Strait Islander people live in remote areas and have poorer health outcomes across all measures (AIHW, 2014). However, even if this group is excluded, there are still disparities between urban and RRR health outcomes (AIHW, 2014). Children living in RRR areas have lower health and educational outcomes than their urban peers (Australian Curriculum, Assessment and Reporting Authority (ACARA), 2013; Baxter, Hayes & Gray, 2011). The experience of children with disabilities in RRR areas is important to investigate, as these children rely on a high level of support from both health and education services. Children with a hearing loss, regardless of where they live, require the same basic intervention to maximize developmental and academic outcomes. This includes early diagnosis followed by early and consistent audiological, educational and family support (Moeller, Ertmer, & Stoel-Gammon, 2016). Children with a hearing loss in all areas of Australia have the same medical, educational, and family support needs. However, in RRR Australia there are deficiencies in the provision of services to children with a hearing loss. The lack of appropriate and specialized services for RRR children with a hearing loss is compounded by higher rates of disability and low SES in RRR families. Disability service provision in Australia is currently experiencing the largest systematic change in social support history. The National Disability Insurance Scheme (NDIS) was legislated in 2013, and was trialed in nine areas of Australia from 2013 to 2016 (NDIS, 2016a). National roll out of the NDIS started in July 2016 and the scheme aims to be completely operational throughout Australia in 2019 (NDIS, 2016b). The NDIS is a policy change from government controlled block funding for disability services to individual support packages (NDIS, 2016c). The aim of the NDIS is to provide individuals with more choice, customization, and control of supports (AIHW, 2015a). At this early stage, there have been a limited number of independent evaluations of the NDIS. The aim of this systematic review is to investigate the accessibility of disability support services for children living in RRR areas with a particular emphasis on the experiences of children with a hearing loss in the Australian context. A synthesis of the current literature will be presented, with key themes identified. The results and quality of each article will be reported and provided in a summary table. The findings of this review will help guide service providers and governments, while also identifying areas for future research. Method Search Strategy A combination of electronic and manual searching was used to identify relevant studies and reports. All searches were limited to the period from 2006 to 2017. The first database search identified articles addressing children with hearing loss in RRR Australia. It was anticipated that there would be minimal research specifically focused on Australian children with a hearing loss in RRR areas. As a result, additional searches were performed to provide important contextual information about the experiences of families with a child with any kind of disability in RRR areas, and the experience or expectations of the National Disability Insurance Scheme. Consequently, the second search included articles that addressed all children with a disability in RRR areas of Australia. The third search identified the combination of RRR in the abstracts and the National Disability Insurance Scheme (NDIS) mentioned anywhere in the text. The final search located any articles with the National Disability Insurance Scheme or the NDIS in the title. As the NDIS is a new initiative, this search was naturally limited to the last few years. Electronic searches The following databases were searched from the period of January 2006 to November 2017: EBSCO – Academic Search Complete EBSCO – Education Search Complete CINAHL PROQUEST CENTRAL INFORMIT – limited to subjects Indigenous, Health, Education and Social Science. The following four search strategies were used to identify articles: Search 1: Hearing Loss [child* OR pediatric* OR pediatric*] in Abstracts AND [rural OR regional OR remote OR geograph*] in Abstracts AND [deaf* OR hearing impair* OR hard of hearing OR hearing loss OR otitis media] in Abstracts Search 2: Disability [child* OR pediatric* OR pediatric*] in Abstracts AND [rural OR regional OR remote OR geograph*] in Abstracts AND [disab*] in Abstracts Search 3: NDIS [rural OR regional OR remote OR geograph*] in Abstracts AND [NDIS] anywhere in the text Search 4: NDIS [National Disability Insurance Scheme OR NDIS] in the title Manual searches Manual searches were completed of the following organizations and one author: Australian Institute of Health and Welfare (AIHW) Australian Bureau of Statistics (ABS) Australian Institute of Family Studies (AIFS) Website of a prominent author (Michelle Lincoln) Selection criteria All studies included in the systematic literature review met the following criteria: children aged 0–16 years old (studies were included if a large proportion of the participants were children under 16 years old) published 2006 to 2017 hearing loss was ≥40 dB in at least one ear or chronic otitis media written in English peer reviewed academic articles AustralianStudies were excluded based on the following criteria: Case studies: Research based on case studies were not included due to the low level of evidence, which does not support generalization to the wider population. Reports of programs with no data: Articles were not included if the content was a description of a specific program with no supporting data. Time frame Articles were limited to the last 11 years due to the significant changes in infant hearing screening and the advances in hearing technology. Strength and quality of evidence Each article was rated with the John Hopkins Evidence Based Rating Scale for Strength and Quality of Evidence (Newhouse, Dearholt, Poe, Pugh, & White, 2005). The John Hopkins scale first allocates a rating based on the strength of the evidence for a wide range of research: Level One indicates strong evidence such as results obtained from experimental studies and randomized control trials. Level Two is assigned to results and conclusions from quasi-experimental studies. Level Three is considered a weaker strength of evidence, such as findings reported from nonexperimental or qualitative studies.Each article is then rated for quality: Quality Rating A is considered high quality and is applied to studies that have an adequate sample size, and that make strong conclusions based on a thorough, evidence based literature review. Quality Rating B is considered good quality and is applied to studies that have an adequate sample size, and that yield fairly reliable results, with recommendations based on a reasonable literature review. Quality Rating C is applied to research that is considered low quality owing to significant weakness such as inadequate sample size, and inconsistent findings that do not support a definite conclusion. The quality ratings in the John Hopkins scale are particularly valuable in assessing research on children with disabilities, as experimental or quasi-experimental research designs are not always appropriate for this population. Given the complexity and scarcity of research on children with a hearing loss in RRR areas, articles with a quality rating of C were included in the review if they appeared in the first main search (Search 1: children with a hearing loss in RRR areas). Articles with a quality rating of C were not included from the remaining three searches of children with disability and the National Disability Insurance Scheme. These additional searches were performed to add context and validity to the first main search, and were limited to good to high-quality rated research. Inter-rater Reliability The first author rated all the articles for quality with the John Hopkins Evidence Based Rating Scale for Strength and Quality of Evidence (Newhouse et al., 2005). The co-authors rated 10% of the articles for quality, and 100% reliability was achieved. Results Electronic Search Results Of the 2818 titles and abstracts viewed through database searching, 25 were relevant to the study (see Figure 1). The reasons for study exclusion were no original data (opinion pieces and descriptions of programs) studies did not meet standard of quality a study protocol was detailed with no results Figure 1. View largeDownload slide Flow chart showing the selection process. Figure 1. View largeDownload slide Flow chart showing the selection process. Manual Search Results The Australian Institute of Health and Welfare (AIHW) had four relevant reports. The Australian Bureau of Statistics (ABS) had four relevant reports. The Australian Institute of Family Studies (AIFS) had one relevant report. A search of the author with the highest number of articles included in the systematic review (Michelle Lincoln) found three additional articles. The manual searches located an additional 12 relevant documents not identified in the electronic searches. This resulted in a total of 28 articles and 9 relevant reports for the content analysis. Strength of Evidence and Quality of Studies Of the 28 studies identified in this systematic review, 24 were quantitative surveys and/or qualitative interviews. Of the remaining studies, one was a narrative review and three were quasi-experimental. According to the strength of evidence criteria in the John Hopkins Rating Scale (Newhouse et al., 2005) all of these studies would be considered to provide only low level evidence (level three strength of evidence). However, these studies varied in quality with: 13 high-quality A rated studies, 11 good quality B rated studies, 4 low quality C rated study. A summary of the content and quality of each article is included in the  Appendix. The quality A articles had a sufficient sample size based on a comprehensive literature review. The quality B articles had sufficient sample size based on a reasonable literature review. All four quality C articles included results from one center only, which was the workplace of one of the authors of the article. Despite the low-quality ratings given to these four articles due to potential selection bias, they were included because each study investigated the experiences of Australian children with a hearing loss living in RRR areas and the issues discussed were of specific relevance to this review. Although the strength of evidence in the 28 articles that met the inclusion criteria was low, the majority of articles were good to high quality and provided rich information and repeated themes. Nine Australian reports from the gray literature were also included; however, these reports were not rated for quality. All of these reports were based on data from the Australian Bureau of Statistics (ABS). These Australian government reports were also included as they contained important data about living in RRR Australia. Key Issues Identified in the Content Analysis A systematic search of the literature from 2006 to 2017 found 28 articles and nine Australian government reports that investigated the experiences of children with disabilities living in RRR areas of Australia. Of the 28 articles, only 10 specifically examined children with hearing loss in RRR Australia. Four of these studies addressed the hearing loss of Indigenous children and four presented low-quality level C evidence, mainly because the findings were based on the experiences of children from one center or program only. The results of the broader search terms that included RRR children with disabilities other than hearing loss were included in the results, as the impact of living in an RRR area is likely to be similar for families regardless of their child’s type of disability. The articles and reports were combined into one set for a content analysis and for the purpose of identifying common themes relevant to the experiences of families of children with a hearing loss and families of children with other disabilities in RRR areas. A content analysis identified seven key themes in the literature. The seven themes included: access to specialized services, travel and cost, communication, minority groups, socioeconomic status (SES), social capital and the National Disability Insurance Scheme (NDIS). Access to specialized services The challenge of accessing appropriate services was consistently reported by RRR families with a child with disabilities. A lack of qualified professionals in RRR areas was reported in education, child care, allied health and medical support (Baxter et al., 2011; Gallego et al., 2017, 2015c; Tait & Hussain, 2017). In Australia, an adequate supply of general practitioners (family doctors) in RRR areas was reported; however, there was a lack of medical specialists (AIHW, 2014). Several Australian studies found that families living in RRR areas had difficulties accessing specialist medical care and experienced allied health professionals (Baxter et al., 2011; Brown & Remnie, 2008; Constantinescu, 2012; Dew et al., 2013a; Gallego et al., 2017; Hussain & Tait, 2015; Tait & Hussain, 2017). Educational support was limited in RRR areas, with parents reporting limited schooling options and inadequate support in school (Tait & Hussain, 2017). Families living in RRR areas had difficulty accessing qualified professionals across the disciplines of education, child care, medicine, and allied health. High workforce turnover is an additional challenge to the limited supply of qualified professionals in RRR areas of Australia (Gallego et al., 2015b; Hussain & Tait, 2015; Veitch et al., 2012). The transience of RRR professionals is influenced by large caseloads, high demands, restricted career progression, limited professional development opportunities, and a lack of professional support (Dew et al., 2016; Gallego et al., 2015c; Keane, Lincoln, & Smith, 2012; Lincoln et al., 2013; Veitch et al., 2012). Another challenge to staff consistency was the large proportion of RRR allied health staff in the most populous Australian state planning to retire in the next 5–10 years (Smith, Fisher, Keane, & Lincoln, 2011). In response to these difficulties, many service providers offer telepractice (the provision of health and education services through videoconferencing technology such as Skype and Facetime). Parents of children with a hearing loss have reported satisfaction with telepractice and would recommend the service (Constantinescu, 2012). The accessibility of specialist services for children with a hearing loss in RRR areas has received minimal investigation. One Australian study of six specialist teachers reported some negative effects of living in RRR areas, because the audiological equipment was not well maintained and attendance at intervention was less regular (Fulcher, Purcell, Baker, & Munro, 2015). Location can be a factor in the quality of audiological care for children with a hearing loss living in RRR areas. Travel and cost A consequence of the reduced choice of services in RRR areas is extensive travel for families to larger centers and cities (AIHW, 2014; Gallego et al., 2017; Hussain & Tait, 2015; Tait & Hussain, 2017). The need to travel long distances in order to access appropriate service was a key concern reported by Australian RRR families. While some services were fully funded, the associated costs of travel and accommodation made attending services financially challenging (Dew et al., 2013a; Tait & Hussain, 2017). One study found that the travel distance to an educational center was a significant barrier to accessing early intervention (Lai, Serraglio, & Martin, 2014). Families may also experience a linked reduction in income for taking time off work to transport the child to appointments (Dew et al., 2013b; Gallego et al., 2017; Tait & Hussain, 2017). The dangers of country driving was also an issue for Australian RRR families. Many families from RRR Australia avoid driving at dawn and dusk as this is a time when kangaroos are active and may be present on country roads (Hussain & Tait, 2015). However, these are the times when families living long distances from services may need to travel to or from an appointment. Families may choose to travel during daylight hours to reduce this danger, but this could result in accommodation costs and additional time off work. Professionals working in RRR areas also reported that among the challenges of traveling long distances to locations was the cost of overnight accommodation which was not remunerated by their employer (Dew et al., 2016). Those working in RRR private practice reported the need for sturdy, reliable cars for long range driving and these cars cost more to purchase and maintain than cars used by urban colleagues (Gallego et al., 2016). The travel demands and linked costs for both parents and professionals significantly impacts the access to specialized services for RRR Australian families. Communication Families of children with a disability reported a lack of information in RRR areas (Brown & Remnie, 2008; Dew et al., 2013b; Howard, Blakemore, Johnston, Taylor, & Dibley, 2015; Hussain & Tait, 2015; Tait & Hussain, 2017). This finding was also reported as a concern of families of children with a hearing loss (Brown & Remnie, 2008; Checker, Remnie, & Brown, 2009). While comprehensive information was valued, the timing of this information was also important (Hussain & Tait, 2015). A major source of information for parents is the Internet. Simpson and Baldwin (2017) examined the accessibility of information on the Internet about hearing loss and the National Disability Insurance Scheme (NDIS). They found that while reasonable quality information was available on the Internet, it was not easily accessible to parents, indicating the need for professional assistance to locate relevant information (Simpson & Baldwin, 2017). This finding was confirmed in a study of parents of children with disabilities, who reported the NDIS website was difficult to navigate and needed to provide more relevant content for parents (Ranansinghe, Jeyaseelan, White, & Russo, 2017). Families in RRR areas requested streamlined services, as there was often poor communication and co-ordination between services (AIHW 2012a). These services were also found to be poor communicators, with families consistently reporting a lack of information about their child’s disabilities (AIHW 2012a; Howard et al., 2015; Hussain & Tait, 2015; Tait & Hussain, 2017). However, in contrast, one study found that some parents of children with a hearing loss received too much information about their child’s goals and disability (Brown & Remnie, 2008). This highlights the skills required by professionals in providing the right amount of information according to the specific needs of the family, while also ensuring that RRR families are not disadvantaged through a lack of information. A key worker was reported as an important resource to support communication for families of children with disabilities (Dew et al., 2013b; Howard et al., 2015). A key worker’s role is to be the main contact for the family, and to assist the family to identify and access relevant services (Early Childhood Intervention Australia, 2014). Minority groups Children are further at-risk of poor health and educational outcomes when their family belongs to a minority group. Indigenous Australians account for 3% of the total Australian population (AIHW, 2014). One-third live in major cities, while 52% live in regional and rural areas and 14% in very remote areas (AIHW, 2014). Indigenous Australians have been found to be disadvantaged as they are under-represented in disability support services (Gilroy, Dew, Lincoln, & Hines, 2017; Veitch et al., 2012). Providing an Indigenous workforce in RRR areas is a core practice to increase engagement with disability services, which is particularly important in light of the national roll out of the National Disability Insurance Scheme (Gilroy et al., 2017). Indigenous children have an extremely high prevalence of middle ear disease (otitis media), which can cause associated mild and moderate hearing loss (AIHW, 2014; Rothstein, Heazlewood, & Fraser, 2007). Family doctors working with Indigenous children in RRR areas saw a greater proportion of children with middle ear infections, but these areas had limited follow up services and long waiting times (Gunasekera, Morris, Daniels, Couzos, & Craig, 2009). Aboriginal children were almost one-third less likely than non-Aboriginal children to have ventilation tube surgery for otitis media, despite significantly higher levels of this disease (Falster et al., 2013). The hearing loss associated with untreated otitis media can impact academic skills, language development, and social interactions (Kong & Coates, 2009). Some innovative solutions to providing ear nose and throat surgery services were reported. One study used pooled funding to transport children more than 500 miles from remote coastal and island areas for surgery, with follow up performed via telehealth (Jacups, Newman, Dean, Richards, & McConnon, 2017). Time spent building relationships in the community is valued in RRR areas, but is not recognized by many service providers and funding streams (Dew et al., 2016). The importance on building rapport, particularly with Aboriginal Elders, is often not recognized as chargeable time, which limits the financial viability of private practices in these areas (Dew et al., 2016). Despite a government focus on funding for Indigenous Australians, this population continues to experience challenges accessing specialized services, a lack of information, and long waiting lists (AIHW, 2015b). Families from other cultural minority groups had more difficulties accessing early intervention than families who were part of the majority culture. Australian professionals working with children with a hearing loss reported that families from an ethnic minority typically accessed intervention services later than families from the majority culture (Fulcher et al., 2015; Lai et al., 2014). An Australian study found English as an Additional Language or Dialect (EALD) was a stronger barrier to accessing early intervention than low SES (Lai et al., 2014). While living in an RRR area presents several difficulties for families, belonging to an additional minority group places children at further risk for reduced access to service. Socioeconomic status (SES) Low SES is another significant factor that influences health and educational outcomes (ABS, 2008a). In 2012, the percentage of Australian children with a disability from high-income families was 2.7%, compared to 6.5% from low-income families (AIHW, 2012b). This finding is consistent across all types of disability, including hearing loss (AIHW, 2012b). In Australia, there is a greater proportion of families from a low socioeconomic background living in RRR areas (ABS, 2008a). While a higher number of low-income families can be found in RRR areas, children living on large land parcels outside of the town centers tend to come from higher socioeconomic families (ABS, 2008a). For this reason, it is important to distinguish RRR families by a number of factors rather than a broad-brush measure such as postcode, as rural areas are likely to have a greater diversity of socioeconomic groups. The combination of a low SES and a child with disabilities is linked with reduced employment and income for families (ABS, 2008b). However, it is still unclear if the SES of the family is a causal factor or a consequence of having a child with disabilities (Lai et al., 2014). The relationship between disability and socioeconomic status is complex. Disadvantage may contribute to and precede disability through exposure to environmental risks, inadequate nutrition, or maternal risk factors. Alternatively, disadvantage may be the result of having a child with disabilities, reflecting reduced opportunities to engage in paid employment and the greater costs of caring for a child with disabilities (ABS, 2008b, para. 5). Families living in RRR areas also have greater expenses, even if therapy and services are free, because of the associated costs of travel and accommodation (Dew et al., 2013b). Families with a low SES also have less access to information than parents from a higher SES, although the causes were not investigated (Hussain & Tait, 2015). The combination of RRR living and low SES places children with disabilities at risk owing to decreased information and reduced access to support services. Parental education is also closely linked to SES. The ABS reported that “couple families where neither parent had completed secondary school, were almost twice as likely as other couple families to have a child with a profound/severe disability (9% compared with 5%)” (2008b, para. 6). This finding was replicated in single parent families, further demonstrating the strong link between parent education and child disability rates. One-third of children with disabilities belonged to single parent families, who often experience a higher incidence of economic disadvantage than two parent families (ABS, 2008b). Children with disabilities have been found to belong to larger than average families, which may also increase economic stress (ABS, 2008b). Additionally, families where one or both parents had disabilities were also more likely to have a child with disabilities (ABS, 2008b). Each of these additional characteristics increases the risk of disadvantage for families with children with disabilities. Overall, there appears to be a strong association between a family’s SES and their risk of having a child with disabilities. This relationship is complex, appearing both causal and consequential. Social capital Reduced availability of support is a consistent challenge for those living in RRR areas (Hussain & Tait, 2015). Some RRR families reported relocating from their rural homes to larger centers in order to access improved professional support for their child with disabilities, even though that meant moving away from informal family and community support (Hussain & Tait, 2015). Despite the reported disadvantages in accessing formal supports, the strong connections and informal networks within the RRR communities were described as one of the benefits of RRR living. Strong community connections were also found to be valued by professionals who worked in RRR areas (Gallego et al., 2015a, 2015b). Both families and professionals with high levels of social capital considered community connections to be one of the best aspects of RRR living. The National Disability Insurance Scheme (NDIS) The National Disability Insurance Scheme (NDIS) is a new Australian government funding approach that has been trialed in nine trial sites since July 2013 and began a national roll-out in July 2016. There is a small but growing number of published studies investigating different aspects of the NDIS. This review located eight relevant articles. One study of 42 parents reported they were generally satisfied with the NDIS, with the majority of these parents (83%) living in a capital city (Ranasinghe et al., 2017). Other studies showed mixed levels of satisfaction reported by parents (Howard et al., 2015). A study from a regional trial site found that families had difficulty finding information about the NDIS (Howard et al., 2015). Families in this regional area found it hard to attend information sessions about the NDIS due to transport difficulties and the associated costs (Howard et al., 2015). Parents recommended it would be helpful to have more NDIS staff and offices in RRR areas (Ranasinghe et al., 2017). This study by Ranasinghe et al. (2017) found that parents were satisfied with the NDIS registration process, however 45% of these parents required assistance from a health professional when registering. Other studies have reported that the responsibility of co-ordinating services and administering individual funding was an extra responsibility that many families found challenging, particularly as they already had the stress of caring for a child with a disability (Dew et al., 2013a; Howard et al., 2015). Families already receiving a form of individual funding living in RRR areas have reported difficulty using their funding due to a lack of providers (Dew et al., 2013b; Gallego et al., 2015b). The quality of support, ability to manage funding, and availability of services are key concerns of the individual funding model (Purcal, Fisher, & Laragy, 2014). The supply of professionals may not be sufficient to meet the demand created by the NDIS in RRR areas. Initial reports have shown that individual funding packages creates an increased demand for services, but there may not be capacity to meet these increased demands in RRR areas (Dew et al., 2013b; Gallego et al., 2015b). A study in one large Australian state found that the number of private RRR allied health professionals had decreased over time (Gallego et al., 2015b). This trend is a concern, as significant growth in this sector is needed to implement the NDIS (Smith et al., 2011). In addition, families in RRR Australia have reported difficulties negotiating with large government agencies (Hussain & Tait, 2015). Given that the NDIS is a large federal government agency, these findings have significant implications for the roll-out of the NDIS in RRR areas. Discussion Factors addressing the services available to children with a hearing loss in RRR Australia were identified across 28 articles and 9 Australian Government documents. Children with disabilities living in RRR areas experience challenges accessing services. The seven themes identified in the review were supported by good to high-quality studies and all but the social capital theme were also supported by the gray literature. These themes were: Access to specialized services. The main concern throughout the studies was the low supply of qualified professionals and specialized services in RRR Australia. Travel and cost. The need to travel to larger centers to access services resulted in long travel times and associated costs. Communication. Poor communication was consistently found to be a difficulty in RRR areas, with families reporting the need for more timely information, more connection with other families and better communication between services. Minority groups. Indigenous Australians were less likely to access disability services and also less likely to receive medical intervention for a hearing loss. Those belonging to a minority group such as EALD were at risk of delayed access to service and limited information from service providers. SES. SES was another major factor that influenced access to services. Families from a low SES background with a child with disabilities have less access to both information and services. The link between SES and having a child with disabilities is multifaceted and needs to be considered in any investigation of RRR services. Social capital. Families and professionals both valued RRR areas with strong community connections. National Disability Insurance Scheme (NDIS). The introduction of the NDIS has changed the foundation of disability service delivery in Australia. Studies reported concerns that the roll out of the NDIS may result in children with disabilities in RRR areas not having the same opportunity to access specialized services as children in metropolitan areas. Managing individual funding packages was also anticipated to be a challenge. Overall, this review has identified repeated themes regarding the experiences of families of children with a hearing loss living in RRR areas and the views of professionals who work with these families. Although there were a limited number of published articles in this area, and the research evidence was generally low strength, the majority of articles were good to high quality. The consistency of themes across the studies and in the gray literature provides a moderate level of confidence in the findings. However, these findings should be interpreted cautiously as they are largely based in the results and conclusion from observational studies and four studies were considered to be low quality. This systematic review provides tentative evidence regarding access to services for RRR families with a child with a hearing loss and the introduction of the NDIS in the Australian context. Recommendations for Practice The literature discussed several recommendations for improving services for children with a hearing loss in RRR areas. Some service providers recognized the challenges in providing equitable service to RRR and urban families and have offered alternate service delivery models (Veitch et al., 2012). The implementation of telepractice has grown with improvements in technology (Constantinescu, 2012). However, telepractice requires further investigation with long-term studies that include a higher number of participants that directly compare face-to–face sessions and telepractice. Another priority recommendation was to provide outreach visits from specialist staff in RRR areas (Fulcher et al., 2015). These specialists could then train therapy assistants to promote continuity of service in RRR areas (Dew et al., 2013b). Families in RRR areas would benefit from multiple opportunities to network and hear specialist information. These opportunities may facilitate families collaborating to use funding in flexible ways, such as pooling funding to pay for specialists to fly into RRR areas (Dew et al., 2013b; Jacups et al., 2017). Improving access to information is a priority in RRR Australia. A central phone line to ring agencies in another town or city was not considered to be adequate for families of children with disabilities (Dew et al., 2013b). Families preferred a key worker model where a local person could provide information which reduces the demands on the family (Dew et al., 2013b; Howard et al., 2015). Minority groups should also be given extra support to help them access services (Lai et al., 2014). While the flexibility provided by individual funding can benefit families, many families require additional support from professionals in order to source relevant information and to optimize funding for their child with disabilities. Limitations A limitation of this study was the small number of published studies in the area and the low level of evidence provided by the articles available for review. All of the articles located were based on nonexperimental or qualitative data. While these articles provided rich information, the findings of this review must be applied cautiously. Only 10 of the articles identified directly addressed the issue of children with a hearing loss in RRR Australia, and four of these were classified as low-quality evidence because the findings were based on the experience of children from one center or program only. Another limitation of this research is that some search terms were not included that may have resulted in a higher yield of relevant studies (e.g., “individual funding”). In addition, applying the search terms to the whole document may have identified a higher number of relevant studies. Future Research The unique experience of Australian RRR families with a child with a hearing loss should receive further investigation through high-quality research. A large independent study of children with a hearing loss is warranted, including children with chronic otitis media, due to the magnitude of this condition in Indigenous Australian children. It is important that the new national initiative of the NDIS receives thorough independent investigation. Families’ expectations or experience of the NDIS should be included in any investigation as the scheme is rolled out nationally. Future studies also need to investigate the influence of SES and parental education. Additionally, although children with a hearing loss are increasingly placed in mainstream classes, particularly in RRR areas, there have been no investigations of the experience of mainstream teachers in RRR Australia. Conflict of interest No conflicts of interest were reported. References Australian Bureau of Statistics. ( 2008a). ABS releases measures of socio-economic advantage and disadvantage. Retrieved September 18, 2015 from: http://www.abs.gov.au/ausstats/abs@.nsf/mediareleasesbyReleaseDate/AC5B967F97D4902ECA257B3B001AF670?OpenDocument Australian Bureau of Statistics. ( 2008b). Families with a young child with a disability. Retrieved September 12, 2015 from http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Chapter4002008 Australian Bureau of Statistics. ( 2014). Regional Population Growth, Australia, 2012–13. 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Google Scholar PubMed  Appendix Journal Articles Included in the Systematic Review Author and Year  Participants  Study quality  Main themes identified  Main findings  Articles relevant to children with a hearing loss in RRR areas  Search 1: Hearing Loss [child* OR pediatric* OR pediatric*] AND[rural OR regional OR remote OR geograph*] AND [deaf* OR hearing impair*OR hard of hearing OR hearing loss OR otitis media] in abstracts  Brown & Remnie (2008)  24 families and 27 professionals from one early intervention provider  Level 3C  Access to specialized services  Professionals supported most components of family-centered practice. Families receiving traditional intervention and video conferenced intervention both reported high levels of family functioning. Rural parents would like more contact with professionals outside school hours and school holidays. Parents wanted clarity of information and at times had too much information. All the participants were recruited from one program, which limits the generalization of these findings  Communication  Checker and colleagues (2009)  34 families with children aged 14 months to 17 year with a mean of 9 years 4 months  Level 3C  Access to specialized services  Parents wanted more visits from ITD in rural areas and parent centered collaborative service. All of the families were recruited through one center. Content validity issue as 23 children attended a school within 20 km of the Teacher of the Deaf  Communication  Constantinescu (2012)  13 families and 5 therapists. The children were aged 6 months to 6.5 years with an average age of 3.1 years  Level 3C  Access to specialized services.  Parents and therapists were satisfied with tele intervention. The survey was administered at a residential workshop that evaluated the service provider on their premises creating a selection bias  Falster and colleagues (2013)  653,550 children aged 0–8 years old  Level 3A  Access to specialized services  The insertion of ventilation tubes were less frequently performed in Aboriginal children (by 28%) than non-Aboriginal children, despite the higher rates of otitis media in Aboriginal children. They found children with a higher SES were more likely to have ventilation tubes inserted, followed by those living in major cities  Minority groups  Socioeconomic status (SES)  Fulcher and colleagues (2015)  6 auditory verbal therapists  Level 3 C  Access to specialized services  Clinicians reported that children living in RRR areas had difficulty attending regular therapy due to the distance and cost. Families also had greater difficulty maintaining audiological equipment. This study had a very small sample size of six therapists from one center  Travel and cost  Minority groups  Gunasekera, Morris, Daniels, Couzos, and Craig (2009)  131 medical practitioners  Level 3 B  Access to specialized services  Rural practitioners saw a greater number of children with otitis media and reported a lack of follow up services including ENT appointments and audiological testing. These services also had long wait times in rural areas  Minority Groups  Jacups and colleagues (2017)  16 children 4–17 years old with a mean of 8.9 years (14 Indigenous). Received surgery through combined funding with telehealth follow-up  Level 3 B  Access to specialized services  Description of transporting children more than 800 km to receive ear, nose and throat surgery through pooling funding sources with private funding. Children were followed up with telehealth services. Improvements were reported in hearing, behavior, sleeping, breathing and concentration  Minority Groups  Lai and colleagues (2014)  11 early intervention coordinators in Victoria reporting on 133 children  Level 3 B  Access to specialized services  Families living further from the intervention center and families from an ethnic minority took longer to access intervention. There was no significant difference found for access by different SES groups. Conclude that ethnicity and location have more influence on access to services than SES. These results should be interpreted with caution as there was 100% participation from one center  Travel and cost  Socioeconomic status (SES)  Minority Groups  Rothstein and colleagues (2007)  3,562 Aboriginal and Torres Strait Islander children aged 0–18 years with a mean age of 7.6 years  Level 3 B  Access to specialized services  Very high levels of chronic suppurative otitis media, child protection issues and failure to thrive were found in remote Indigenous communities. This study recommended more health care support was required in these remote areas  Minority Groups  Simpson and Baldwin (2017)  Rated the quality and accessibility of online information about hearing loss and the NDIS  Level 3 A  Communication The National Disability  Insurance Scheme (NDIS)  Found there was a large volume of information on the Internet about hearing loss, but information about hearing loss and the NDIS was difficult to find. Information about support options was the most challenging to find through the Internet. They highlighted the importance of guidance from a professional when sourcing information from websites  Articles relevant to children with disabilities in RRR areas  Search 2: Disability [child* OR pediatric* OR pediatric*] AND [rural OR regional OR remote OR geograph*] AND [disab*] in abstracts  Dew and colleagues (2013a)  78 carers and 10 adults with disability. Age range 16 months to 60 years median age of 9 years old  Level 3 A  Access to specialized services  Found limited access to support, high staff turnover, costs and limited support after early intervention for those in rural and remote areas  Travel and cost  The National Disability Insurance Scheme (NDIS)  Gallego and colleagues (2015a)  165 allied health professionals  Level 3 A  Access to specialized services  Found that the factors that motivate professionals to stay in rural areas were autonomy, professional development opportunities, professional support and professional development, flexible working hours and stays away from home limited to one night only. Participants reported that a rural salary loading would be an enticement to stay in rural areas  Social Capital  Gallego and colleagues (2015b)  165 allied health professionals  Level 3 A  Access to specialized services  Overall, allied health professionals enjoyed rural living. Many had family in the local area. However they had concerns with job security and access to professional development  Social capital  The National Disability Insurance Scheme (NDIS)  Gallego et al. (2016)  Survey of 41 private speech pathologists in RRR areas  Level 3 B  Access to specialized services  The average time working in the rural area was 17 years, showing that those in RRR areas can access experienced private therapists. However private therapists said that they could not meet demand, which is an important factor as the NDIS is introduced, which is predicted to increase the demand for private therapists  Gallego et al. (2017)  Carers of people aged range 1–69 years old with an average of 17.6 years  Level 3 A  Access to specialized services  All children 0–6 years had received therapy services in the last 2 years and 83% of those aged 7–17 years. Carers reported a lack of services in RRR areas and significant disability related expenses. The cost and time to travel to services in larger centers was also reported  Travel and cost  Hussain and Tait (2015)  17 parents of children under 18 years  Level 3 B  Access to specialized services  Parental concerns in rural areas included reduced and poorly timed information about disability. A lack of services and long waiting lists were also reported. Parents also reported low numbers of staff with experience, and high staff turnover  Travel and cost  Communication  Socioeconomic status (SES)  Social capital  The National Disability Insurance Scheme (NDIS)  Howard and colleagues (2015)  75 parents surveyed and 34 interviewed from an early intervention services  Level 3 A  Communication  Parents had a limited knowledge of NDIS system. They reported a desire for holistic and family-centered services and the difficulties of managing individual funding  The National Disability Insurance Scheme (NDIS)  Keane and colleagues (2012)  30 allied health professionals in 6 focus groups  Level 3 A  Access to specialized services  Professionals enjoyed the community of RRR areas. Limited professional development opportunities and a large caseloads were consistent concerns. Participants also wanted better career structure and advancement opportunities  Smith and colleagues (2011)  430 allied health professionals  Level 3 B  Access to specialized services  Compared 2005 and 2008 surveys. The 2008 survey had less private allied health professionals available. The proportion working more than 40 hr a week had doubled. In both surveys about 50% of respondents said they would leave their job in the next 5 years with retirement as the main reason  The National Disability Insurance Scheme (NDIS)  Veitch and colleagues (2012)  50 professionals  Level 3 B  Access to specialized  services Minority Groups  Multiple difficulties for those with disabilities in rural and remote NSW, mainly equal access to service. There were also issues of staff retention and co-ordination of services  Articles relevant to the National Disability Insurance Scheme (NDIS)  Search 3: NDIS [rural OR regional OR remote OR geograph*] in abstracts AND [NDIS] anywhere in the text  Search 4: NDIS.[National Disability Insurance Scheme OR NDIS] in the title  Dew and colleagues (2013b)  10 carers of children aged 2–8 years old with a mean age of 5 years  Level 3 A  Communication  Advantages of individual funding were a greater choice and access to services. A barrier was the lack of information. There was also a small range of service providers with limited capacity. Participants reported difficulties managing funding. Solutions created by families included pooling funding and flying therapists in and out of smaller centers. Therapy assistants were also used and private therapists linking with local services  Socioeconomic status (SES)  The National Disability Insurance Scheme (NDIS)  60 service providers  Dew and colleagues (2016)  Focus groups and interviews of 28 rural private therapists, nine users of disability services  Level 3 A  Access to specialized services  This research used to qualitative data to create a framework to address the unique needs of private therapists supporting participants of the NDIS. Both facilitators and barriers to service provision were discussed and themed. They included access to specialist, travel and cost and access to professional development. The lack of recognition of the value of building rapport and non-face to face time was considered a barrier to service in small communities  Travel and Cost  The National Disability Insurance Scheme (NDIS)  Gallego and colleagues (2015c)  92 allied health professionals in focus groups and 5 interviews  Level 3 A  Access to specialized services  Identified themes of travel, professional development and support, career structure, workplace flexibility, independence and remuneration as significant issues for retaining rural staff  The National Disability Insurance Scheme (NDIS)  Gilroy and colleagues (2017)  Narrative review of 6 peer reviewed articles and 12 publications from the gray literature  Level 3 B  Communication  The result of this review found that cultural practices are foundational to providing support to Indigenous communities in RRR areas. The Indigenous population is under-represented in disability services. The recommendations of this review included creating an Indigenous disability support team in RRR areas  Minority Groups  The National Disability Insurance Scheme (NDIS)  Lincoln and colleagues (2013)  92 allied health professionals in focus groups and 5 interviews  Level 3 A  Access to specialized services  Discuss benefits of living in rural areas. The challenges to retention included long waiting lists, a large amount of administration tasks, travel demands and a lack of professional structure  The National Disability Insurance Scheme (NDIS)  Purcal and colleagues (2014)  23 government administrators  Level 3 B  The National Disability Insurance Scheme (NDIS)  Discussed the move from block funding to individual funding. Individual funding has benefits but also disadvantages for those with intellectual disability and those in regional areas who have less opportunity for choice  Ranasinghe and colleagues (2017)  Survey and open ended questions of 42 parents who had registered for the NDIS. Their children were under 7 years old  Level 3 B  The National Disability Insurance Scheme (NDIS)  Overall parents were satisfied with the process of registering and accessing NDIS support. However, almost half the respondents had assistance from a health professional when accessing the scheme. Discussed the wide range of responses and the need for further investigation in this area  Tait and Hussain (2017)  Mixed methodology research. 49 parents completed a survey and 17 participated in an individual interview. The ages of their children ranged from 3 to 20 years old  Level 3 A  Access to specialized services  Found that parents in RRR areas reported that there was poor educational support for their child. Parents also reported challenges with the travel and expense required to access specialized services that were not available locally. Recommendations included further training for mainstream teachers and teacher aides  Travel and cost  Communication  The National Disability Insurance Scheme (NDIS)  Author and Year  Participants  Study quality  Main themes identified  Main findings  Articles relevant to children with a hearing loss in RRR areas  Search 1: Hearing Loss [child* OR pediatric* OR pediatric*] AND[rural OR regional OR remote OR geograph*] AND [deaf* OR hearing impair*OR hard of hearing OR hearing loss OR otitis media] in abstracts  Brown & Remnie (2008)  24 families and 27 professionals from one early intervention provider  Level 3C  Access to specialized services  Professionals supported most components of family-centered practice. Families receiving traditional intervention and video conferenced intervention both reported high levels of family functioning. Rural parents would like more contact with professionals outside school hours and school holidays. Parents wanted clarity of information and at times had too much information. All the participants were recruited from one program, which limits the generalization of these findings  Communication  Checker and colleagues (2009)  34 families with children aged 14 months to 17 year with a mean of 9 years 4 months  Level 3C  Access to specialized services  Parents wanted more visits from ITD in rural areas and parent centered collaborative service. All of the families were recruited through one center. Content validity issue as 23 children attended a school within 20 km of the Teacher of the Deaf  Communication  Constantinescu (2012)  13 families and 5 therapists. The children were aged 6 months to 6.5 years with an average age of 3.1 years  Level 3C  Access to specialized services.  Parents and therapists were satisfied with tele intervention. The survey was administered at a residential workshop that evaluated the service provider on their premises creating a selection bias  Falster and colleagues (2013)  653,550 children aged 0–8 years old  Level 3A  Access to specialized services  The insertion of ventilation tubes were less frequently performed in Aboriginal children (by 28%) than non-Aboriginal children, despite the higher rates of otitis media in Aboriginal children. They found children with a higher SES were more likely to have ventilation tubes inserted, followed by those living in major cities  Minority groups  Socioeconomic status (SES)  Fulcher and colleagues (2015)  6 auditory verbal therapists  Level 3 C  Access to specialized services  Clinicians reported that children living in RRR areas had difficulty attending regular therapy due to the distance and cost. Families also had greater difficulty maintaining audiological equipment. This study had a very small sample size of six therapists from one center  Travel and cost  Minority groups  Gunasekera, Morris, Daniels, Couzos, and Craig (2009)  131 medical practitioners  Level 3 B  Access to specialized services  Rural practitioners saw a greater number of children with otitis media and reported a lack of follow up services including ENT appointments and audiological testing. These services also had long wait times in rural areas  Minority Groups  Jacups and colleagues (2017)  16 children 4–17 years old with a mean of 8.9 years (14 Indigenous). Received surgery through combined funding with telehealth follow-up  Level 3 B  Access to specialized services  Description of transporting children more than 800 km to receive ear, nose and throat surgery through pooling funding sources with private funding. Children were followed up with telehealth services. Improvements were reported in hearing, behavior, sleeping, breathing and concentration  Minority Groups  Lai and colleagues (2014)  11 early intervention coordinators in Victoria reporting on 133 children  Level 3 B  Access to specialized services  Families living further from the intervention center and families from an ethnic minority took longer to access intervention. There was no significant difference found for access by different SES groups. Conclude that ethnicity and location have more influence on access to services than SES. These results should be interpreted with caution as there was 100% participation from one center  Travel and cost  Socioeconomic status (SES)  Minority Groups  Rothstein and colleagues (2007)  3,562 Aboriginal and Torres Strait Islander children aged 0–18 years with a mean age of 7.6 years  Level 3 B  Access to specialized services  Very high levels of chronic suppurative otitis media, child protection issues and failure to thrive were found in remote Indigenous communities. This study recommended more health care support was required in these remote areas  Minority Groups  Simpson and Baldwin (2017)  Rated the quality and accessibility of online information about hearing loss and the NDIS  Level 3 A  Communication The National Disability  Insurance Scheme (NDIS)  Found there was a large volume of information on the Internet about hearing loss, but information about hearing loss and the NDIS was difficult to find. Information about support options was the most challenging to find through the Internet. They highlighted the importance of guidance from a professional when sourcing information from websites  Articles relevant to children with disabilities in RRR areas  Search 2: Disability [child* OR pediatric* OR pediatric*] AND [rural OR regional OR remote OR geograph*] AND [disab*] in abstracts  Dew and colleagues (2013a)  78 carers and 10 adults with disability. Age range 16 months to 60 years median age of 9 years old  Level 3 A  Access to specialized services  Found limited access to support, high staff turnover, costs and limited support after early intervention for those in rural and remote areas  Travel and cost  The National Disability Insurance Scheme (NDIS)  Gallego and colleagues (2015a)  165 allied health professionals  Level 3 A  Access to specialized services  Found that the factors that motivate professionals to stay in rural areas were autonomy, professional development opportunities, professional support and professional development, flexible working hours and stays away from home limited to one night only. Participants reported that a rural salary loading would be an enticement to stay in rural areas  Social Capital  Gallego and colleagues (2015b)  165 allied health professionals  Level 3 A  Access to specialized services  Overall, allied health professionals enjoyed rural living. Many had family in the local area. However they had concerns with job security and access to professional development  Social capital  The National Disability Insurance Scheme (NDIS)  Gallego et al. (2016)  Survey of 41 private speech pathologists in RRR areas  Level 3 B  Access to specialized services  The average time working in the rural area was 17 years, showing that those in RRR areas can access experienced private therapists. However private therapists said that they could not meet demand, which is an important factor as the NDIS is introduced, which is predicted to increase the demand for private therapists  Gallego et al. (2017)  Carers of people aged range 1–69 years old with an average of 17.6 years  Level 3 A  Access to specialized services  All children 0–6 years had received therapy services in the last 2 years and 83% of those aged 7–17 years. Carers reported a lack of services in RRR areas and significant disability related expenses. The cost and time to travel to services in larger centers was also reported  Travel and cost  Hussain and Tait (2015)  17 parents of children under 18 years  Level 3 B  Access to specialized services  Parental concerns in rural areas included reduced and poorly timed information about disability. A lack of services and long waiting lists were also reported. Parents also reported low numbers of staff with experience, and high staff turnover  Travel and cost  Communication  Socioeconomic status (SES)  Social capital  The National Disability Insurance Scheme (NDIS)  Howard and colleagues (2015)  75 parents surveyed and 34 interviewed from an early intervention services  Level 3 A  Communication  Parents had a limited knowledge of NDIS system. They reported a desire for holistic and family-centered services and the difficulties of managing individual funding  The National Disability Insurance Scheme (NDIS)  Keane and colleagues (2012)  30 allied health professionals in 6 focus groups  Level 3 A  Access to specialized services  Professionals enjoyed the community of RRR areas. Limited professional development opportunities and a large caseloads were consistent concerns. Participants also wanted better career structure and advancement opportunities  Smith and colleagues (2011)  430 allied health professionals  Level 3 B  Access to specialized services  Compared 2005 and 2008 surveys. The 2008 survey had less private allied health professionals available. The proportion working more than 40 hr a week had doubled. In both surveys about 50% of respondents said they would leave their job in the next 5 years with retirement as the main reason  The National Disability Insurance Scheme (NDIS)  Veitch and colleagues (2012)  50 professionals  Level 3 B  Access to specialized  services Minority Groups  Multiple difficulties for those with disabilities in rural and remote NSW, mainly equal access to service. There were also issues of staff retention and co-ordination of services  Articles relevant to the National Disability Insurance Scheme (NDIS)  Search 3: NDIS [rural OR regional OR remote OR geograph*] in abstracts AND [NDIS] anywhere in the text  Search 4: NDIS.[National Disability Insurance Scheme OR NDIS] in the title  Dew and colleagues (2013b)  10 carers of children aged 2–8 years old with a mean age of 5 years  Level 3 A  Communication  Advantages of individual funding were a greater choice and access to services. A barrier was the lack of information. There was also a small range of service providers with limited capacity. Participants reported difficulties managing funding. Solutions created by families included pooling funding and flying therapists in and out of smaller centers. Therapy assistants were also used and private therapists linking with local services  Socioeconomic status (SES)  The National Disability Insurance Scheme (NDIS)  60 service providers  Dew and colleagues (2016)  Focus groups and interviews of 28 rural private therapists, nine users of disability services  Level 3 A  Access to specialized services  This research used to qualitative data to create a framework to address the unique needs of private therapists supporting participants of the NDIS. Both facilitators and barriers to service provision were discussed and themed. They included access to specialist, travel and cost and access to professional development. The lack of recognition of the value of building rapport and non-face to face time was considered a barrier to service in small communities  Travel and Cost  The National Disability Insurance Scheme (NDIS)  Gallego and colleagues (2015c)  92 allied health professionals in focus groups and 5 interviews  Level 3 A  Access to specialized services  Identified themes of travel, professional development and support, career structure, workplace flexibility, independence and remuneration as significant issues for retaining rural staff  The National Disability Insurance Scheme (NDIS)  Gilroy and colleagues (2017)  Narrative review of 6 peer reviewed articles and 12 publications from the gray literature  Level 3 B  Communication  The result of this review found that cultural practices are foundational to providing support to Indigenous communities in RRR areas. The Indigenous population is under-represented in disability services. The recommendations of this review included creating an Indigenous disability support team in RRR areas  Minority Groups  The National Disability Insurance Scheme (NDIS)  Lincoln and colleagues (2013)  92 allied health professionals in focus groups and 5 interviews  Level 3 A  Access to specialized services  Discuss benefits of living in rural areas. The challenges to retention included long waiting lists, a large amount of administration tasks, travel demands and a lack of professional structure  The National Disability Insurance Scheme (NDIS)  Purcal and colleagues (2014)  23 government administrators  Level 3 B  The National Disability Insurance Scheme (NDIS)  Discussed the move from block funding to individual funding. Individual funding has benefits but also disadvantages for those with intellectual disability and those in regional areas who have less opportunity for choice  Ranasinghe and colleagues (2017)  Survey and open ended questions of 42 parents who had registered for the NDIS. Their children were under 7 years old  Level 3 B  The National Disability Insurance Scheme (NDIS)  Overall parents were satisfied with the process of registering and accessing NDIS support. However, almost half the respondents had assistance from a health professional when accessing the scheme. Discussed the wide range of responses and the need for further investigation in this area  Tait and Hussain (2017)  Mixed methodology research. 49 parents completed a survey and 17 participated in an individual interview. The ages of their children ranged from 3 to 20 years old  Level 3 A  Access to specialized services  Found that parents in RRR areas reported that there was poor educational support for their child. Parents also reported challenges with the travel and expense required to access specialized services that were not available locally. Recommendations included further training for mainstream teachers and teacher aides  Travel and cost  Communication  The National Disability Insurance Scheme (NDIS)  Quality of Article – rated with John Hopkins Nursing Evidence Based Practice (2005). © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Journal of Deaf Studies and Deaf Education Oxford University Press

A Systematic Review of Services to DHH Children in Rural and Remote Regions

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Oxford University Press
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© The Author(s) 2018. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.
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1081-4159
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1465-7325
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10.1093/deafed/enx059
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Abstract

Abstract Children in regional, rural and remote areas have less access to services than those living in urban areas. Practitioners serving children with a hearing loss have attempted to address this gap, however there are few studies investigating service access and experiences of non-metropolitan families and professionals. This systematic review evaluates the literature on service provision to children with a hearing loss living in regional, rural and remote areas of Australia. A search of five databases, the gray literature and a prominent author located 37 relevant documents. The journal articles were rated for quality and the findings of all documents were themed. The evidence from this review indicates that children with a hearing loss living in regional, rural and remote Australia experience reduced quality and frequency of service. Further investigation is needed to identify the accessibility and suitability of services for children with a hearing loss in non-metropolitan areas. People living in regional, rural and remote (RRR) Australia consistently have poorer health and educational outcomes than those living in major cities (Baxter & Hayes, 2011). The definition of regional, rural and remote varies between organizations and countries. For the purpose of this review, classifications have been based on the Accessibility/Remoteness Index of Australia (The University of Adelaide, 2016). A major city is considered to be a center with a population of 250,000 people or more, with remaining centers classified as regional, rural and remote (RRR) (The University of Adelaide, 2016). In Australia, one-third of the total population lives in RRR areas (Australian Bureau of Statistics (ABS), 2014). As people live progressively further away from a major city, there is a corresponding decrease in life expectancy and an increased rate of disease (Australian Institute of Health and Welfare (AIHW), 2014). In Australia, the proportion of people with disabilities is slightly higher in outer regional (14%) and inner regional (15%) areas than those in urban centers (12%) (AIHW, 2015a). A higher proportion of Aboriginal and Torres Strait Islander people live in remote areas and have poorer health outcomes across all measures (AIHW, 2014). However, even if this group is excluded, there are still disparities between urban and RRR health outcomes (AIHW, 2014). Children living in RRR areas have lower health and educational outcomes than their urban peers (Australian Curriculum, Assessment and Reporting Authority (ACARA), 2013; Baxter, Hayes & Gray, 2011). The experience of children with disabilities in RRR areas is important to investigate, as these children rely on a high level of support from both health and education services. Children with a hearing loss, regardless of where they live, require the same basic intervention to maximize developmental and academic outcomes. This includes early diagnosis followed by early and consistent audiological, educational and family support (Moeller, Ertmer, & Stoel-Gammon, 2016). Children with a hearing loss in all areas of Australia have the same medical, educational, and family support needs. However, in RRR Australia there are deficiencies in the provision of services to children with a hearing loss. The lack of appropriate and specialized services for RRR children with a hearing loss is compounded by higher rates of disability and low SES in RRR families. Disability service provision in Australia is currently experiencing the largest systematic change in social support history. The National Disability Insurance Scheme (NDIS) was legislated in 2013, and was trialed in nine areas of Australia from 2013 to 2016 (NDIS, 2016a). National roll out of the NDIS started in July 2016 and the scheme aims to be completely operational throughout Australia in 2019 (NDIS, 2016b). The NDIS is a policy change from government controlled block funding for disability services to individual support packages (NDIS, 2016c). The aim of the NDIS is to provide individuals with more choice, customization, and control of supports (AIHW, 2015a). At this early stage, there have been a limited number of independent evaluations of the NDIS. The aim of this systematic review is to investigate the accessibility of disability support services for children living in RRR areas with a particular emphasis on the experiences of children with a hearing loss in the Australian context. A synthesis of the current literature will be presented, with key themes identified. The results and quality of each article will be reported and provided in a summary table. The findings of this review will help guide service providers and governments, while also identifying areas for future research. Method Search Strategy A combination of electronic and manual searching was used to identify relevant studies and reports. All searches were limited to the period from 2006 to 2017. The first database search identified articles addressing children with hearing loss in RRR Australia. It was anticipated that there would be minimal research specifically focused on Australian children with a hearing loss in RRR areas. As a result, additional searches were performed to provide important contextual information about the experiences of families with a child with any kind of disability in RRR areas, and the experience or expectations of the National Disability Insurance Scheme. Consequently, the second search included articles that addressed all children with a disability in RRR areas of Australia. The third search identified the combination of RRR in the abstracts and the National Disability Insurance Scheme (NDIS) mentioned anywhere in the text. The final search located any articles with the National Disability Insurance Scheme or the NDIS in the title. As the NDIS is a new initiative, this search was naturally limited to the last few years. Electronic searches The following databases were searched from the period of January 2006 to November 2017: EBSCO – Academic Search Complete EBSCO – Education Search Complete CINAHL PROQUEST CENTRAL INFORMIT – limited to subjects Indigenous, Health, Education and Social Science. The following four search strategies were used to identify articles: Search 1: Hearing Loss [child* OR pediatric* OR pediatric*] in Abstracts AND [rural OR regional OR remote OR geograph*] in Abstracts AND [deaf* OR hearing impair* OR hard of hearing OR hearing loss OR otitis media] in Abstracts Search 2: Disability [child* OR pediatric* OR pediatric*] in Abstracts AND [rural OR regional OR remote OR geograph*] in Abstracts AND [disab*] in Abstracts Search 3: NDIS [rural OR regional OR remote OR geograph*] in Abstracts AND [NDIS] anywhere in the text Search 4: NDIS [National Disability Insurance Scheme OR NDIS] in the title Manual searches Manual searches were completed of the following organizations and one author: Australian Institute of Health and Welfare (AIHW) Australian Bureau of Statistics (ABS) Australian Institute of Family Studies (AIFS) Website of a prominent author (Michelle Lincoln) Selection criteria All studies included in the systematic literature review met the following criteria: children aged 0–16 years old (studies were included if a large proportion of the participants were children under 16 years old) published 2006 to 2017 hearing loss was ≥40 dB in at least one ear or chronic otitis media written in English peer reviewed academic articles AustralianStudies were excluded based on the following criteria: Case studies: Research based on case studies were not included due to the low level of evidence, which does not support generalization to the wider population. Reports of programs with no data: Articles were not included if the content was a description of a specific program with no supporting data. Time frame Articles were limited to the last 11 years due to the significant changes in infant hearing screening and the advances in hearing technology. Strength and quality of evidence Each article was rated with the John Hopkins Evidence Based Rating Scale for Strength and Quality of Evidence (Newhouse, Dearholt, Poe, Pugh, & White, 2005). The John Hopkins scale first allocates a rating based on the strength of the evidence for a wide range of research: Level One indicates strong evidence such as results obtained from experimental studies and randomized control trials. Level Two is assigned to results and conclusions from quasi-experimental studies. Level Three is considered a weaker strength of evidence, such as findings reported from nonexperimental or qualitative studies.Each article is then rated for quality: Quality Rating A is considered high quality and is applied to studies that have an adequate sample size, and that make strong conclusions based on a thorough, evidence based literature review. Quality Rating B is considered good quality and is applied to studies that have an adequate sample size, and that yield fairly reliable results, with recommendations based on a reasonable literature review. Quality Rating C is applied to research that is considered low quality owing to significant weakness such as inadequate sample size, and inconsistent findings that do not support a definite conclusion. The quality ratings in the John Hopkins scale are particularly valuable in assessing research on children with disabilities, as experimental or quasi-experimental research designs are not always appropriate for this population. Given the complexity and scarcity of research on children with a hearing loss in RRR areas, articles with a quality rating of C were included in the review if they appeared in the first main search (Search 1: children with a hearing loss in RRR areas). Articles with a quality rating of C were not included from the remaining three searches of children with disability and the National Disability Insurance Scheme. These additional searches were performed to add context and validity to the first main search, and were limited to good to high-quality rated research. Inter-rater Reliability The first author rated all the articles for quality with the John Hopkins Evidence Based Rating Scale for Strength and Quality of Evidence (Newhouse et al., 2005). The co-authors rated 10% of the articles for quality, and 100% reliability was achieved. Results Electronic Search Results Of the 2818 titles and abstracts viewed through database searching, 25 were relevant to the study (see Figure 1). The reasons for study exclusion were no original data (opinion pieces and descriptions of programs) studies did not meet standard of quality a study protocol was detailed with no results Figure 1. View largeDownload slide Flow chart showing the selection process. Figure 1. View largeDownload slide Flow chart showing the selection process. Manual Search Results The Australian Institute of Health and Welfare (AIHW) had four relevant reports. The Australian Bureau of Statistics (ABS) had four relevant reports. The Australian Institute of Family Studies (AIFS) had one relevant report. A search of the author with the highest number of articles included in the systematic review (Michelle Lincoln) found three additional articles. The manual searches located an additional 12 relevant documents not identified in the electronic searches. This resulted in a total of 28 articles and 9 relevant reports for the content analysis. Strength of Evidence and Quality of Studies Of the 28 studies identified in this systematic review, 24 were quantitative surveys and/or qualitative interviews. Of the remaining studies, one was a narrative review and three were quasi-experimental. According to the strength of evidence criteria in the John Hopkins Rating Scale (Newhouse et al., 2005) all of these studies would be considered to provide only low level evidence (level three strength of evidence). However, these studies varied in quality with: 13 high-quality A rated studies, 11 good quality B rated studies, 4 low quality C rated study. A summary of the content and quality of each article is included in the  Appendix. The quality A articles had a sufficient sample size based on a comprehensive literature review. The quality B articles had sufficient sample size based on a reasonable literature review. All four quality C articles included results from one center only, which was the workplace of one of the authors of the article. Despite the low-quality ratings given to these four articles due to potential selection bias, they were included because each study investigated the experiences of Australian children with a hearing loss living in RRR areas and the issues discussed were of specific relevance to this review. Although the strength of evidence in the 28 articles that met the inclusion criteria was low, the majority of articles were good to high quality and provided rich information and repeated themes. Nine Australian reports from the gray literature were also included; however, these reports were not rated for quality. All of these reports were based on data from the Australian Bureau of Statistics (ABS). These Australian government reports were also included as they contained important data about living in RRR Australia. Key Issues Identified in the Content Analysis A systematic search of the literature from 2006 to 2017 found 28 articles and nine Australian government reports that investigated the experiences of children with disabilities living in RRR areas of Australia. Of the 28 articles, only 10 specifically examined children with hearing loss in RRR Australia. Four of these studies addressed the hearing loss of Indigenous children and four presented low-quality level C evidence, mainly because the findings were based on the experiences of children from one center or program only. The results of the broader search terms that included RRR children with disabilities other than hearing loss were included in the results, as the impact of living in an RRR area is likely to be similar for families regardless of their child’s type of disability. The articles and reports were combined into one set for a content analysis and for the purpose of identifying common themes relevant to the experiences of families of children with a hearing loss and families of children with other disabilities in RRR areas. A content analysis identified seven key themes in the literature. The seven themes included: access to specialized services, travel and cost, communication, minority groups, socioeconomic status (SES), social capital and the National Disability Insurance Scheme (NDIS). Access to specialized services The challenge of accessing appropriate services was consistently reported by RRR families with a child with disabilities. A lack of qualified professionals in RRR areas was reported in education, child care, allied health and medical support (Baxter et al., 2011; Gallego et al., 2017, 2015c; Tait & Hussain, 2017). In Australia, an adequate supply of general practitioners (family doctors) in RRR areas was reported; however, there was a lack of medical specialists (AIHW, 2014). Several Australian studies found that families living in RRR areas had difficulties accessing specialist medical care and experienced allied health professionals (Baxter et al., 2011; Brown & Remnie, 2008; Constantinescu, 2012; Dew et al., 2013a; Gallego et al., 2017; Hussain & Tait, 2015; Tait & Hussain, 2017). Educational support was limited in RRR areas, with parents reporting limited schooling options and inadequate support in school (Tait & Hussain, 2017). Families living in RRR areas had difficulty accessing qualified professionals across the disciplines of education, child care, medicine, and allied health. High workforce turnover is an additional challenge to the limited supply of qualified professionals in RRR areas of Australia (Gallego et al., 2015b; Hussain & Tait, 2015; Veitch et al., 2012). The transience of RRR professionals is influenced by large caseloads, high demands, restricted career progression, limited professional development opportunities, and a lack of professional support (Dew et al., 2016; Gallego et al., 2015c; Keane, Lincoln, & Smith, 2012; Lincoln et al., 2013; Veitch et al., 2012). Another challenge to staff consistency was the large proportion of RRR allied health staff in the most populous Australian state planning to retire in the next 5–10 years (Smith, Fisher, Keane, & Lincoln, 2011). In response to these difficulties, many service providers offer telepractice (the provision of health and education services through videoconferencing technology such as Skype and Facetime). Parents of children with a hearing loss have reported satisfaction with telepractice and would recommend the service (Constantinescu, 2012). The accessibility of specialist services for children with a hearing loss in RRR areas has received minimal investigation. One Australian study of six specialist teachers reported some negative effects of living in RRR areas, because the audiological equipment was not well maintained and attendance at intervention was less regular (Fulcher, Purcell, Baker, & Munro, 2015). Location can be a factor in the quality of audiological care for children with a hearing loss living in RRR areas. Travel and cost A consequence of the reduced choice of services in RRR areas is extensive travel for families to larger centers and cities (AIHW, 2014; Gallego et al., 2017; Hussain & Tait, 2015; Tait & Hussain, 2017). The need to travel long distances in order to access appropriate service was a key concern reported by Australian RRR families. While some services were fully funded, the associated costs of travel and accommodation made attending services financially challenging (Dew et al., 2013a; Tait & Hussain, 2017). One study found that the travel distance to an educational center was a significant barrier to accessing early intervention (Lai, Serraglio, & Martin, 2014). Families may also experience a linked reduction in income for taking time off work to transport the child to appointments (Dew et al., 2013b; Gallego et al., 2017; Tait & Hussain, 2017). The dangers of country driving was also an issue for Australian RRR families. Many families from RRR Australia avoid driving at dawn and dusk as this is a time when kangaroos are active and may be present on country roads (Hussain & Tait, 2015). However, these are the times when families living long distances from services may need to travel to or from an appointment. Families may choose to travel during daylight hours to reduce this danger, but this could result in accommodation costs and additional time off work. Professionals working in RRR areas also reported that among the challenges of traveling long distances to locations was the cost of overnight accommodation which was not remunerated by their employer (Dew et al., 2016). Those working in RRR private practice reported the need for sturdy, reliable cars for long range driving and these cars cost more to purchase and maintain than cars used by urban colleagues (Gallego et al., 2016). The travel demands and linked costs for both parents and professionals significantly impacts the access to specialized services for RRR Australian families. Communication Families of children with a disability reported a lack of information in RRR areas (Brown & Remnie, 2008; Dew et al., 2013b; Howard, Blakemore, Johnston, Taylor, & Dibley, 2015; Hussain & Tait, 2015; Tait & Hussain, 2017). This finding was also reported as a concern of families of children with a hearing loss (Brown & Remnie, 2008; Checker, Remnie, & Brown, 2009). While comprehensive information was valued, the timing of this information was also important (Hussain & Tait, 2015). A major source of information for parents is the Internet. Simpson and Baldwin (2017) examined the accessibility of information on the Internet about hearing loss and the National Disability Insurance Scheme (NDIS). They found that while reasonable quality information was available on the Internet, it was not easily accessible to parents, indicating the need for professional assistance to locate relevant information (Simpson & Baldwin, 2017). This finding was confirmed in a study of parents of children with disabilities, who reported the NDIS website was difficult to navigate and needed to provide more relevant content for parents (Ranansinghe, Jeyaseelan, White, & Russo, 2017). Families in RRR areas requested streamlined services, as there was often poor communication and co-ordination between services (AIHW 2012a). These services were also found to be poor communicators, with families consistently reporting a lack of information about their child’s disabilities (AIHW 2012a; Howard et al., 2015; Hussain & Tait, 2015; Tait & Hussain, 2017). However, in contrast, one study found that some parents of children with a hearing loss received too much information about their child’s goals and disability (Brown & Remnie, 2008). This highlights the skills required by professionals in providing the right amount of information according to the specific needs of the family, while also ensuring that RRR families are not disadvantaged through a lack of information. A key worker was reported as an important resource to support communication for families of children with disabilities (Dew et al., 2013b; Howard et al., 2015). A key worker’s role is to be the main contact for the family, and to assist the family to identify and access relevant services (Early Childhood Intervention Australia, 2014). Minority groups Children are further at-risk of poor health and educational outcomes when their family belongs to a minority group. Indigenous Australians account for 3% of the total Australian population (AIHW, 2014). One-third live in major cities, while 52% live in regional and rural areas and 14% in very remote areas (AIHW, 2014). Indigenous Australians have been found to be disadvantaged as they are under-represented in disability support services (Gilroy, Dew, Lincoln, & Hines, 2017; Veitch et al., 2012). Providing an Indigenous workforce in RRR areas is a core practice to increase engagement with disability services, which is particularly important in light of the national roll out of the National Disability Insurance Scheme (Gilroy et al., 2017). Indigenous children have an extremely high prevalence of middle ear disease (otitis media), which can cause associated mild and moderate hearing loss (AIHW, 2014; Rothstein, Heazlewood, & Fraser, 2007). Family doctors working with Indigenous children in RRR areas saw a greater proportion of children with middle ear infections, but these areas had limited follow up services and long waiting times (Gunasekera, Morris, Daniels, Couzos, & Craig, 2009). Aboriginal children were almost one-third less likely than non-Aboriginal children to have ventilation tube surgery for otitis media, despite significantly higher levels of this disease (Falster et al., 2013). The hearing loss associated with untreated otitis media can impact academic skills, language development, and social interactions (Kong & Coates, 2009). Some innovative solutions to providing ear nose and throat surgery services were reported. One study used pooled funding to transport children more than 500 miles from remote coastal and island areas for surgery, with follow up performed via telehealth (Jacups, Newman, Dean, Richards, & McConnon, 2017). Time spent building relationships in the community is valued in RRR areas, but is not recognized by many service providers and funding streams (Dew et al., 2016). The importance on building rapport, particularly with Aboriginal Elders, is often not recognized as chargeable time, which limits the financial viability of private practices in these areas (Dew et al., 2016). Despite a government focus on funding for Indigenous Australians, this population continues to experience challenges accessing specialized services, a lack of information, and long waiting lists (AIHW, 2015b). Families from other cultural minority groups had more difficulties accessing early intervention than families who were part of the majority culture. Australian professionals working with children with a hearing loss reported that families from an ethnic minority typically accessed intervention services later than families from the majority culture (Fulcher et al., 2015; Lai et al., 2014). An Australian study found English as an Additional Language or Dialect (EALD) was a stronger barrier to accessing early intervention than low SES (Lai et al., 2014). While living in an RRR area presents several difficulties for families, belonging to an additional minority group places children at further risk for reduced access to service. Socioeconomic status (SES) Low SES is another significant factor that influences health and educational outcomes (ABS, 2008a). In 2012, the percentage of Australian children with a disability from high-income families was 2.7%, compared to 6.5% from low-income families (AIHW, 2012b). This finding is consistent across all types of disability, including hearing loss (AIHW, 2012b). In Australia, there is a greater proportion of families from a low socioeconomic background living in RRR areas (ABS, 2008a). While a higher number of low-income families can be found in RRR areas, children living on large land parcels outside of the town centers tend to come from higher socioeconomic families (ABS, 2008a). For this reason, it is important to distinguish RRR families by a number of factors rather than a broad-brush measure such as postcode, as rural areas are likely to have a greater diversity of socioeconomic groups. The combination of a low SES and a child with disabilities is linked with reduced employment and income for families (ABS, 2008b). However, it is still unclear if the SES of the family is a causal factor or a consequence of having a child with disabilities (Lai et al., 2014). The relationship between disability and socioeconomic status is complex. Disadvantage may contribute to and precede disability through exposure to environmental risks, inadequate nutrition, or maternal risk factors. Alternatively, disadvantage may be the result of having a child with disabilities, reflecting reduced opportunities to engage in paid employment and the greater costs of caring for a child with disabilities (ABS, 2008b, para. 5). Families living in RRR areas also have greater expenses, even if therapy and services are free, because of the associated costs of travel and accommodation (Dew et al., 2013b). Families with a low SES also have less access to information than parents from a higher SES, although the causes were not investigated (Hussain & Tait, 2015). The combination of RRR living and low SES places children with disabilities at risk owing to decreased information and reduced access to support services. Parental education is also closely linked to SES. The ABS reported that “couple families where neither parent had completed secondary school, were almost twice as likely as other couple families to have a child with a profound/severe disability (9% compared with 5%)” (2008b, para. 6). This finding was replicated in single parent families, further demonstrating the strong link between parent education and child disability rates. One-third of children with disabilities belonged to single parent families, who often experience a higher incidence of economic disadvantage than two parent families (ABS, 2008b). Children with disabilities have been found to belong to larger than average families, which may also increase economic stress (ABS, 2008b). Additionally, families where one or both parents had disabilities were also more likely to have a child with disabilities (ABS, 2008b). Each of these additional characteristics increases the risk of disadvantage for families with children with disabilities. Overall, there appears to be a strong association between a family’s SES and their risk of having a child with disabilities. This relationship is complex, appearing both causal and consequential. Social capital Reduced availability of support is a consistent challenge for those living in RRR areas (Hussain & Tait, 2015). Some RRR families reported relocating from their rural homes to larger centers in order to access improved professional support for their child with disabilities, even though that meant moving away from informal family and community support (Hussain & Tait, 2015). Despite the reported disadvantages in accessing formal supports, the strong connections and informal networks within the RRR communities were described as one of the benefits of RRR living. Strong community connections were also found to be valued by professionals who worked in RRR areas (Gallego et al., 2015a, 2015b). Both families and professionals with high levels of social capital considered community connections to be one of the best aspects of RRR living. The National Disability Insurance Scheme (NDIS) The National Disability Insurance Scheme (NDIS) is a new Australian government funding approach that has been trialed in nine trial sites since July 2013 and began a national roll-out in July 2016. There is a small but growing number of published studies investigating different aspects of the NDIS. This review located eight relevant articles. One study of 42 parents reported they were generally satisfied with the NDIS, with the majority of these parents (83%) living in a capital city (Ranasinghe et al., 2017). Other studies showed mixed levels of satisfaction reported by parents (Howard et al., 2015). A study from a regional trial site found that families had difficulty finding information about the NDIS (Howard et al., 2015). Families in this regional area found it hard to attend information sessions about the NDIS due to transport difficulties and the associated costs (Howard et al., 2015). Parents recommended it would be helpful to have more NDIS staff and offices in RRR areas (Ranasinghe et al., 2017). This study by Ranasinghe et al. (2017) found that parents were satisfied with the NDIS registration process, however 45% of these parents required assistance from a health professional when registering. Other studies have reported that the responsibility of co-ordinating services and administering individual funding was an extra responsibility that many families found challenging, particularly as they already had the stress of caring for a child with a disability (Dew et al., 2013a; Howard et al., 2015). Families already receiving a form of individual funding living in RRR areas have reported difficulty using their funding due to a lack of providers (Dew et al., 2013b; Gallego et al., 2015b). The quality of support, ability to manage funding, and availability of services are key concerns of the individual funding model (Purcal, Fisher, & Laragy, 2014). The supply of professionals may not be sufficient to meet the demand created by the NDIS in RRR areas. Initial reports have shown that individual funding packages creates an increased demand for services, but there may not be capacity to meet these increased demands in RRR areas (Dew et al., 2013b; Gallego et al., 2015b). A study in one large Australian state found that the number of private RRR allied health professionals had decreased over time (Gallego et al., 2015b). This trend is a concern, as significant growth in this sector is needed to implement the NDIS (Smith et al., 2011). In addition, families in RRR Australia have reported difficulties negotiating with large government agencies (Hussain & Tait, 2015). Given that the NDIS is a large federal government agency, these findings have significant implications for the roll-out of the NDIS in RRR areas. Discussion Factors addressing the services available to children with a hearing loss in RRR Australia were identified across 28 articles and 9 Australian Government documents. Children with disabilities living in RRR areas experience challenges accessing services. The seven themes identified in the review were supported by good to high-quality studies and all but the social capital theme were also supported by the gray literature. These themes were: Access to specialized services. The main concern throughout the studies was the low supply of qualified professionals and specialized services in RRR Australia. Travel and cost. The need to travel to larger centers to access services resulted in long travel times and associated costs. Communication. Poor communication was consistently found to be a difficulty in RRR areas, with families reporting the need for more timely information, more connection with other families and better communication between services. Minority groups. Indigenous Australians were less likely to access disability services and also less likely to receive medical intervention for a hearing loss. Those belonging to a minority group such as EALD were at risk of delayed access to service and limited information from service providers. SES. SES was another major factor that influenced access to services. Families from a low SES background with a child with disabilities have less access to both information and services. The link between SES and having a child with disabilities is multifaceted and needs to be considered in any investigation of RRR services. Social capital. Families and professionals both valued RRR areas with strong community connections. National Disability Insurance Scheme (NDIS). The introduction of the NDIS has changed the foundation of disability service delivery in Australia. Studies reported concerns that the roll out of the NDIS may result in children with disabilities in RRR areas not having the same opportunity to access specialized services as children in metropolitan areas. Managing individual funding packages was also anticipated to be a challenge. Overall, this review has identified repeated themes regarding the experiences of families of children with a hearing loss living in RRR areas and the views of professionals who work with these families. Although there were a limited number of published articles in this area, and the research evidence was generally low strength, the majority of articles were good to high quality. The consistency of themes across the studies and in the gray literature provides a moderate level of confidence in the findings. However, these findings should be interpreted cautiously as they are largely based in the results and conclusion from observational studies and four studies were considered to be low quality. This systematic review provides tentative evidence regarding access to services for RRR families with a child with a hearing loss and the introduction of the NDIS in the Australian context. Recommendations for Practice The literature discussed several recommendations for improving services for children with a hearing loss in RRR areas. Some service providers recognized the challenges in providing equitable service to RRR and urban families and have offered alternate service delivery models (Veitch et al., 2012). The implementation of telepractice has grown with improvements in technology (Constantinescu, 2012). However, telepractice requires further investigation with long-term studies that include a higher number of participants that directly compare face-to–face sessions and telepractice. Another priority recommendation was to provide outreach visits from specialist staff in RRR areas (Fulcher et al., 2015). These specialists could then train therapy assistants to promote continuity of service in RRR areas (Dew et al., 2013b). Families in RRR areas would benefit from multiple opportunities to network and hear specialist information. These opportunities may facilitate families collaborating to use funding in flexible ways, such as pooling funding to pay for specialists to fly into RRR areas (Dew et al., 2013b; Jacups et al., 2017). Improving access to information is a priority in RRR Australia. A central phone line to ring agencies in another town or city was not considered to be adequate for families of children with disabilities (Dew et al., 2013b). Families preferred a key worker model where a local person could provide information which reduces the demands on the family (Dew et al., 2013b; Howard et al., 2015). Minority groups should also be given extra support to help them access services (Lai et al., 2014). While the flexibility provided by individual funding can benefit families, many families require additional support from professionals in order to source relevant information and to optimize funding for their child with disabilities. Limitations A limitation of this study was the small number of published studies in the area and the low level of evidence provided by the articles available for review. All of the articles located were based on nonexperimental or qualitative data. While these articles provided rich information, the findings of this review must be applied cautiously. Only 10 of the articles identified directly addressed the issue of children with a hearing loss in RRR Australia, and four of these were classified as low-quality evidence because the findings were based on the experience of children from one center or program only. Another limitation of this research is that some search terms were not included that may have resulted in a higher yield of relevant studies (e.g., “individual funding”). In addition, applying the search terms to the whole document may have identified a higher number of relevant studies. Future Research The unique experience of Australian RRR families with a child with a hearing loss should receive further investigation through high-quality research. A large independent study of children with a hearing loss is warranted, including children with chronic otitis media, due to the magnitude of this condition in Indigenous Australian children. It is important that the new national initiative of the NDIS receives thorough independent investigation. Families’ expectations or experience of the NDIS should be included in any investigation as the scheme is rolled out nationally. Future studies also need to investigate the influence of SES and parental education. Additionally, although children with a hearing loss are increasingly placed in mainstream classes, particularly in RRR areas, there have been no investigations of the experience of mainstream teachers in RRR Australia. Conflict of interest No conflicts of interest were reported. References Australian Bureau of Statistics. ( 2008a). ABS releases measures of socio-economic advantage and disadvantage. Retrieved September 18, 2015 from: http://www.abs.gov.au/ausstats/abs@.nsf/mediareleasesbyReleaseDate/AC5B967F97D4902ECA257B3B001AF670?OpenDocument Australian Bureau of Statistics. ( 2008b). Families with a young child with a disability. Retrieved September 12, 2015 from http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Chapter4002008 Australian Bureau of Statistics. ( 2014). Regional Population Growth, Australia, 2012–13. 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Google Scholar PubMed  Appendix Journal Articles Included in the Systematic Review Author and Year  Participants  Study quality  Main themes identified  Main findings  Articles relevant to children with a hearing loss in RRR areas  Search 1: Hearing Loss [child* OR pediatric* OR pediatric*] AND[rural OR regional OR remote OR geograph*] AND [deaf* OR hearing impair*OR hard of hearing OR hearing loss OR otitis media] in abstracts  Brown & Remnie (2008)  24 families and 27 professionals from one early intervention provider  Level 3C  Access to specialized services  Professionals supported most components of family-centered practice. Families receiving traditional intervention and video conferenced intervention both reported high levels of family functioning. Rural parents would like more contact with professionals outside school hours and school holidays. Parents wanted clarity of information and at times had too much information. All the participants were recruited from one program, which limits the generalization of these findings  Communication  Checker and colleagues (2009)  34 families with children aged 14 months to 17 year with a mean of 9 years 4 months  Level 3C  Access to specialized services  Parents wanted more visits from ITD in rural areas and parent centered collaborative service. All of the families were recruited through one center. Content validity issue as 23 children attended a school within 20 km of the Teacher of the Deaf  Communication  Constantinescu (2012)  13 families and 5 therapists. The children were aged 6 months to 6.5 years with an average age of 3.1 years  Level 3C  Access to specialized services.  Parents and therapists were satisfied with tele intervention. The survey was administered at a residential workshop that evaluated the service provider on their premises creating a selection bias  Falster and colleagues (2013)  653,550 children aged 0–8 years old  Level 3A  Access to specialized services  The insertion of ventilation tubes were less frequently performed in Aboriginal children (by 28%) than non-Aboriginal children, despite the higher rates of otitis media in Aboriginal children. They found children with a higher SES were more likely to have ventilation tubes inserted, followed by those living in major cities  Minority groups  Socioeconomic status (SES)  Fulcher and colleagues (2015)  6 auditory verbal therapists  Level 3 C  Access to specialized services  Clinicians reported that children living in RRR areas had difficulty attending regular therapy due to the distance and cost. Families also had greater difficulty maintaining audiological equipment. This study had a very small sample size of six therapists from one center  Travel and cost  Minority groups  Gunasekera, Morris, Daniels, Couzos, and Craig (2009)  131 medical practitioners  Level 3 B  Access to specialized services  Rural practitioners saw a greater number of children with otitis media and reported a lack of follow up services including ENT appointments and audiological testing. These services also had long wait times in rural areas  Minority Groups  Jacups and colleagues (2017)  16 children 4–17 years old with a mean of 8.9 years (14 Indigenous). Received surgery through combined funding with telehealth follow-up  Level 3 B  Access to specialized services  Description of transporting children more than 800 km to receive ear, nose and throat surgery through pooling funding sources with private funding. Children were followed up with telehealth services. Improvements were reported in hearing, behavior, sleeping, breathing and concentration  Minority Groups  Lai and colleagues (2014)  11 early intervention coordinators in Victoria reporting on 133 children  Level 3 B  Access to specialized services  Families living further from the intervention center and families from an ethnic minority took longer to access intervention. There was no significant difference found for access by different SES groups. Conclude that ethnicity and location have more influence on access to services than SES. These results should be interpreted with caution as there was 100% participation from one center  Travel and cost  Socioeconomic status (SES)  Minority Groups  Rothstein and colleagues (2007)  3,562 Aboriginal and Torres Strait Islander children aged 0–18 years with a mean age of 7.6 years  Level 3 B  Access to specialized services  Very high levels of chronic suppurative otitis media, child protection issues and failure to thrive were found in remote Indigenous communities. This study recommended more health care support was required in these remote areas  Minority Groups  Simpson and Baldwin (2017)  Rated the quality and accessibility of online information about hearing loss and the NDIS  Level 3 A  Communication The National Disability  Insurance Scheme (NDIS)  Found there was a large volume of information on the Internet about hearing loss, but information about hearing loss and the NDIS was difficult to find. Information about support options was the most challenging to find through the Internet. They highlighted the importance of guidance from a professional when sourcing information from websites  Articles relevant to children with disabilities in RRR areas  Search 2: Disability [child* OR pediatric* OR pediatric*] AND [rural OR regional OR remote OR geograph*] AND [disab*] in abstracts  Dew and colleagues (2013a)  78 carers and 10 adults with disability. Age range 16 months to 60 years median age of 9 years old  Level 3 A  Access to specialized services  Found limited access to support, high staff turnover, costs and limited support after early intervention for those in rural and remote areas  Travel and cost  The National Disability Insurance Scheme (NDIS)  Gallego and colleagues (2015a)  165 allied health professionals  Level 3 A  Access to specialized services  Found that the factors that motivate professionals to stay in rural areas were autonomy, professional development opportunities, professional support and professional development, flexible working hours and stays away from home limited to one night only. Participants reported that a rural salary loading would be an enticement to stay in rural areas  Social Capital  Gallego and colleagues (2015b)  165 allied health professionals  Level 3 A  Access to specialized services  Overall, allied health professionals enjoyed rural living. Many had family in the local area. However they had concerns with job security and access to professional development  Social capital  The National Disability Insurance Scheme (NDIS)  Gallego et al. (2016)  Survey of 41 private speech pathologists in RRR areas  Level 3 B  Access to specialized services  The average time working in the rural area was 17 years, showing that those in RRR areas can access experienced private therapists. However private therapists said that they could not meet demand, which is an important factor as the NDIS is introduced, which is predicted to increase the demand for private therapists  Gallego et al. (2017)  Carers of people aged range 1–69 years old with an average of 17.6 years  Level 3 A  Access to specialized services  All children 0–6 years had received therapy services in the last 2 years and 83% of those aged 7–17 years. Carers reported a lack of services in RRR areas and significant disability related expenses. The cost and time to travel to services in larger centers was also reported  Travel and cost  Hussain and Tait (2015)  17 parents of children under 18 years  Level 3 B  Access to specialized services  Parental concerns in rural areas included reduced and poorly timed information about disability. A lack of services and long waiting lists were also reported. Parents also reported low numbers of staff with experience, and high staff turnover  Travel and cost  Communication  Socioeconomic status (SES)  Social capital  The National Disability Insurance Scheme (NDIS)  Howard and colleagues (2015)  75 parents surveyed and 34 interviewed from an early intervention services  Level 3 A  Communication  Parents had a limited knowledge of NDIS system. They reported a desire for holistic and family-centered services and the difficulties of managing individual funding  The National Disability Insurance Scheme (NDIS)  Keane and colleagues (2012)  30 allied health professionals in 6 focus groups  Level 3 A  Access to specialized services  Professionals enjoyed the community of RRR areas. Limited professional development opportunities and a large caseloads were consistent concerns. Participants also wanted better career structure and advancement opportunities  Smith and colleagues (2011)  430 allied health professionals  Level 3 B  Access to specialized services  Compared 2005 and 2008 surveys. The 2008 survey had less private allied health professionals available. The proportion working more than 40 hr a week had doubled. In both surveys about 50% of respondents said they would leave their job in the next 5 years with retirement as the main reason  The National Disability Insurance Scheme (NDIS)  Veitch and colleagues (2012)  50 professionals  Level 3 B  Access to specialized  services Minority Groups  Multiple difficulties for those with disabilities in rural and remote NSW, mainly equal access to service. There were also issues of staff retention and co-ordination of services  Articles relevant to the National Disability Insurance Scheme (NDIS)  Search 3: NDIS [rural OR regional OR remote OR geograph*] in abstracts AND [NDIS] anywhere in the text  Search 4: NDIS.[National Disability Insurance Scheme OR NDIS] in the title  Dew and colleagues (2013b)  10 carers of children aged 2–8 years old with a mean age of 5 years  Level 3 A  Communication  Advantages of individual funding were a greater choice and access to services. A barrier was the lack of information. There was also a small range of service providers with limited capacity. Participants reported difficulties managing funding. Solutions created by families included pooling funding and flying therapists in and out of smaller centers. Therapy assistants were also used and private therapists linking with local services  Socioeconomic status (SES)  The National Disability Insurance Scheme (NDIS)  60 service providers  Dew and colleagues (2016)  Focus groups and interviews of 28 rural private therapists, nine users of disability services  Level 3 A  Access to specialized services  This research used to qualitative data to create a framework to address the unique needs of private therapists supporting participants of the NDIS. Both facilitators and barriers to service provision were discussed and themed. They included access to specialist, travel and cost and access to professional development. The lack of recognition of the value of building rapport and non-face to face time was considered a barrier to service in small communities  Travel and Cost  The National Disability Insurance Scheme (NDIS)  Gallego and colleagues (2015c)  92 allied health professionals in focus groups and 5 interviews  Level 3 A  Access to specialized services  Identified themes of travel, professional development and support, career structure, workplace flexibility, independence and remuneration as significant issues for retaining rural staff  The National Disability Insurance Scheme (NDIS)  Gilroy and colleagues (2017)  Narrative review of 6 peer reviewed articles and 12 publications from the gray literature  Level 3 B  Communication  The result of this review found that cultural practices are foundational to providing support to Indigenous communities in RRR areas. The Indigenous population is under-represented in disability services. The recommendations of this review included creating an Indigenous disability support team in RRR areas  Minority Groups  The National Disability Insurance Scheme (NDIS)  Lincoln and colleagues (2013)  92 allied health professionals in focus groups and 5 interviews  Level 3 A  Access to specialized services  Discuss benefits of living in rural areas. The challenges to retention included long waiting lists, a large amount of administration tasks, travel demands and a lack of professional structure  The National Disability Insurance Scheme (NDIS)  Purcal and colleagues (2014)  23 government administrators  Level 3 B  The National Disability Insurance Scheme (NDIS)  Discussed the move from block funding to individual funding. Individual funding has benefits but also disadvantages for those with intellectual disability and those in regional areas who have less opportunity for choice  Ranasinghe and colleagues (2017)  Survey and open ended questions of 42 parents who had registered for the NDIS. Their children were under 7 years old  Level 3 B  The National Disability Insurance Scheme (NDIS)  Overall parents were satisfied with the process of registering and accessing NDIS support. However, almost half the respondents had assistance from a health professional when accessing the scheme. Discussed the wide range of responses and the need for further investigation in this area  Tait and Hussain (2017)  Mixed methodology research. 49 parents completed a survey and 17 participated in an individual interview. The ages of their children ranged from 3 to 20 years old  Level 3 A  Access to specialized services  Found that parents in RRR areas reported that there was poor educational support for their child. Parents also reported challenges with the travel and expense required to access specialized services that were not available locally. Recommendations included further training for mainstream teachers and teacher aides  Travel and cost  Communication  The National Disability Insurance Scheme (NDIS)  Author and Year  Participants  Study quality  Main themes identified  Main findings  Articles relevant to children with a hearing loss in RRR areas  Search 1: Hearing Loss [child* OR pediatric* OR pediatric*] AND[rural OR regional OR remote OR geograph*] AND [deaf* OR hearing impair*OR hard of hearing OR hearing loss OR otitis media] in abstracts  Brown & Remnie (2008)  24 families and 27 professionals from one early intervention provider  Level 3C  Access to specialized services  Professionals supported most components of family-centered practice. Families receiving traditional intervention and video conferenced intervention both reported high levels of family functioning. Rural parents would like more contact with professionals outside school hours and school holidays. Parents wanted clarity of information and at times had too much information. All the participants were recruited from one program, which limits the generalization of these findings  Communication  Checker and colleagues (2009)  34 families with children aged 14 months to 17 year with a mean of 9 years 4 months  Level 3C  Access to specialized services  Parents wanted more visits from ITD in rural areas and parent centered collaborative service. All of the families were recruited through one center. Content validity issue as 23 children attended a school within 20 km of the Teacher of the Deaf  Communication  Constantinescu (2012)  13 families and 5 therapists. The children were aged 6 months to 6.5 years with an average age of 3.1 years  Level 3C  Access to specialized services.  Parents and therapists were satisfied with tele intervention. The survey was administered at a residential workshop that evaluated the service provider on their premises creating a selection bias  Falster and colleagues (2013)  653,550 children aged 0–8 years old  Level 3A  Access to specialized services  The insertion of ventilation tubes were less frequently performed in Aboriginal children (by 28%) than non-Aboriginal children, despite the higher rates of otitis media in Aboriginal children. They found children with a higher SES were more likely to have ventilation tubes inserted, followed by those living in major cities  Minority groups  Socioeconomic status (SES)  Fulcher and colleagues (2015)  6 auditory verbal therapists  Level 3 C  Access to specialized services  Clinicians reported that children living in RRR areas had difficulty attending regular therapy due to the distance and cost. Families also had greater difficulty maintaining audiological equipment. This study had a very small sample size of six therapists from one center  Travel and cost  Minority groups  Gunasekera, Morris, Daniels, Couzos, and Craig (2009)  131 medical practitioners  Level 3 B  Access to specialized services  Rural practitioners saw a greater number of children with otitis media and reported a lack of follow up services including ENT appointments and audiological testing. These services also had long wait times in rural areas  Minority Groups  Jacups and colleagues (2017)  16 children 4–17 years old with a mean of 8.9 years (14 Indigenous). Received surgery through combined funding with telehealth follow-up  Level 3 B  Access to specialized services  Description of transporting children more than 800 km to receive ear, nose and throat surgery through pooling funding sources with private funding. Children were followed up with telehealth services. Improvements were reported in hearing, behavior, sleeping, breathing and concentration  Minority Groups  Lai and colleagues (2014)  11 early intervention coordinators in Victoria reporting on 133 children  Level 3 B  Access to specialized services  Families living further from the intervention center and families from an ethnic minority took longer to access intervention. There was no significant difference found for access by different SES groups. Conclude that ethnicity and location have more influence on access to services than SES. These results should be interpreted with caution as there was 100% participation from one center  Travel and cost  Socioeconomic status (SES)  Minority Groups  Rothstein and colleagues (2007)  3,562 Aboriginal and Torres Strait Islander children aged 0–18 years with a mean age of 7.6 years  Level 3 B  Access to specialized services  Very high levels of chronic suppurative otitis media, child protection issues and failure to thrive were found in remote Indigenous communities. This study recommended more health care support was required in these remote areas  Minority Groups  Simpson and Baldwin (2017)  Rated the quality and accessibility of online information about hearing loss and the NDIS  Level 3 A  Communication The National Disability  Insurance Scheme (NDIS)  Found there was a large volume of information on the Internet about hearing loss, but information about hearing loss and the NDIS was difficult to find. Information about support options was the most challenging to find through the Internet. They highlighted the importance of guidance from a professional when sourcing information from websites  Articles relevant to children with disabilities in RRR areas  Search 2: Disability [child* OR pediatric* OR pediatric*] AND [rural OR regional OR remote OR geograph*] AND [disab*] in abstracts  Dew and colleagues (2013a)  78 carers and 10 adults with disability. Age range 16 months to 60 years median age of 9 years old  Level 3 A  Access to specialized services  Found limited access to support, high staff turnover, costs and limited support after early intervention for those in rural and remote areas  Travel and cost  The National Disability Insurance Scheme (NDIS)  Gallego and colleagues (2015a)  165 allied health professionals  Level 3 A  Access to specialized services  Found that the factors that motivate professionals to stay in rural areas were autonomy, professional development opportunities, professional support and professional development, flexible working hours and stays away from home limited to one night only. Participants reported that a rural salary loading would be an enticement to stay in rural areas  Social Capital  Gallego and colleagues (2015b)  165 allied health professionals  Level 3 A  Access to specialized services  Overall, allied health professionals enjoyed rural living. Many had family in the local area. However they had concerns with job security and access to professional development  Social capital  The National Disability Insurance Scheme (NDIS)  Gallego et al. (2016)  Survey of 41 private speech pathologists in RRR areas  Level 3 B  Access to specialized services  The average time working in the rural area was 17 years, showing that those in RRR areas can access experienced private therapists. However private therapists said that they could not meet demand, which is an important factor as the NDIS is introduced, which is predicted to increase the demand for private therapists  Gallego et al. (2017)  Carers of people aged range 1–69 years old with an average of 17.6 years  Level 3 A  Access to specialized services  All children 0–6 years had received therapy services in the last 2 years and 83% of those aged 7–17 years. Carers reported a lack of services in RRR areas and significant disability related expenses. The cost and time to travel to services in larger centers was also reported  Travel and cost  Hussain and Tait (2015)  17 parents of children under 18 years  Level 3 B  Access to specialized services  Parental concerns in rural areas included reduced and poorly timed information about disability. A lack of services and long waiting lists were also reported. Parents also reported low numbers of staff with experience, and high staff turnover  Travel and cost  Communication  Socioeconomic status (SES)  Social capital  The National Disability Insurance Scheme (NDIS)  Howard and colleagues (2015)  75 parents surveyed and 34 interviewed from an early intervention services  Level 3 A  Communication  Parents had a limited knowledge of NDIS system. They reported a desire for holistic and family-centered services and the difficulties of managing individual funding  The National Disability Insurance Scheme (NDIS)  Keane and colleagues (2012)  30 allied health professionals in 6 focus groups  Level 3 A  Access to specialized services  Professionals enjoyed the community of RRR areas. Limited professional development opportunities and a large caseloads were consistent concerns. Participants also wanted better career structure and advancement opportunities  Smith and colleagues (2011)  430 allied health professionals  Level 3 B  Access to specialized services  Compared 2005 and 2008 surveys. The 2008 survey had less private allied health professionals available. The proportion working more than 40 hr a week had doubled. In both surveys about 50% of respondents said they would leave their job in the next 5 years with retirement as the main reason  The National Disability Insurance Scheme (NDIS)  Veitch and colleagues (2012)  50 professionals  Level 3 B  Access to specialized  services Minority Groups  Multiple difficulties for those with disabilities in rural and remote NSW, mainly equal access to service. There were also issues of staff retention and co-ordination of services  Articles relevant to the National Disability Insurance Scheme (NDIS)  Search 3: NDIS [rural OR regional OR remote OR geograph*] in abstracts AND [NDIS] anywhere in the text  Search 4: NDIS.[National Disability Insurance Scheme OR NDIS] in the title  Dew and colleagues (2013b)  10 carers of children aged 2–8 years old with a mean age of 5 years  Level 3 A  Communication  Advantages of individual funding were a greater choice and access to services. A barrier was the lack of information. There was also a small range of service providers with limited capacity. Participants reported difficulties managing funding. Solutions created by families included pooling funding and flying therapists in and out of smaller centers. Therapy assistants were also used and private therapists linking with local services  Socioeconomic status (SES)  The National Disability Insurance Scheme (NDIS)  60 service providers  Dew and colleagues (2016)  Focus groups and interviews of 28 rural private therapists, nine users of disability services  Level 3 A  Access to specialized services  This research used to qualitative data to create a framework to address the unique needs of private therapists supporting participants of the NDIS. Both facilitators and barriers to service provision were discussed and themed. They included access to specialist, travel and cost and access to professional development. The lack of recognition of the value of building rapport and non-face to face time was considered a barrier to service in small communities  Travel and Cost  The National Disability Insurance Scheme (NDIS)  Gallego and colleagues (2015c)  92 allied health professionals in focus groups and 5 interviews  Level 3 A  Access to specialized services  Identified themes of travel, professional development and support, career structure, workplace flexibility, independence and remuneration as significant issues for retaining rural staff  The National Disability Insurance Scheme (NDIS)  Gilroy and colleagues (2017)  Narrative review of 6 peer reviewed articles and 12 publications from the gray literature  Level 3 B  Communication  The result of this review found that cultural practices are foundational to providing support to Indigenous communities in RRR areas. The Indigenous population is under-represented in disability services. The recommendations of this review included creating an Indigenous disability support team in RRR areas  Minority Groups  The National Disability Insurance Scheme (NDIS)  Lincoln and colleagues (2013)  92 allied health professionals in focus groups and 5 interviews  Level 3 A  Access to specialized services  Discuss benefits of living in rural areas. The challenges to retention included long waiting lists, a large amount of administration tasks, travel demands and a lack of professional structure  The National Disability Insurance Scheme (NDIS)  Purcal and colleagues (2014)  23 government administrators  Level 3 B  The National Disability Insurance Scheme (NDIS)  Discussed the move from block funding to individual funding. Individual funding has benefits but also disadvantages for those with intellectual disability and those in regional areas who have less opportunity for choice  Ranasinghe and colleagues (2017)  Survey and open ended questions of 42 parents who had registered for the NDIS. Their children were under 7 years old  Level 3 B  The National Disability Insurance Scheme (NDIS)  Overall parents were satisfied with the process of registering and accessing NDIS support. However, almost half the respondents had assistance from a health professional when accessing the scheme. Discussed the wide range of responses and the need for further investigation in this area  Tait and Hussain (2017)  Mixed methodology research. 49 parents completed a survey and 17 participated in an individual interview. The ages of their children ranged from 3 to 20 years old  Level 3 A  Access to specialized services  Found that parents in RRR areas reported that there was poor educational support for their child. Parents also reported challenges with the travel and expense required to access specialized services that were not available locally. Recommendations included further training for mainstream teachers and teacher aides  Travel and cost  Communication  The National Disability Insurance Scheme (NDIS)  Quality of Article – rated with John Hopkins Nursing Evidence Based Practice (2005). © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

Journal

The Journal of Deaf Studies and Deaf EducationOxford University Press

Published: Apr 1, 2018

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