http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(18): 1609–1616 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.972586

RESEARCH PAPER

Parental perceptions of information needs and service provision for children with developmental disabilities in rural Australia Rafat Hussain1 and Kathleen Tait2 School of Rural Medicine, University of New England, Armidale, Australia and 2Faculty of Business, Education, Law and Arts, School of Linguistics, Adult & Specialist Education, University of Southern Queensland, Towoomba, Australia

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Abstract

Keywords

Purpose: Rural Australians comprise a third of the population. However, there are relatively few research studies that have focused on issues for children with developmental disabilities in rural regions. In particular, there is very limited research that gives voice to parents regarding challenges faced by them due to their location in rural regions. Methods: This article is based on the qualitative component of a mixed-methods study undertaken in rural settings. In-depth, face-to-face interviews were conducted with 17 parents yielding 30 h of information rich taped data. Thematic analysis techniques were used to identify major issues. Results: Three core themes emerged from analysis of the qualitative data regarding information and support needs: an ongoing lack of timely and relevant information about disabilities and support services; inadequacies in interactions with service providers particularly doctors and allied health staff; and considerable challenges and barriers to access and use of health services. Conclusions: Within the constraints of limited rural service provision, there are still opportunities for considerable improvements, through focussed in-service training to narrow the information gap, improve provider-client interaction around attitudinal issues and uptake of tele-health to minimise the long waiting times and the need to regularly travel long distances to access services and setting up online support groups.

Australia, developmental disabilities, information needs, rural, support services History Received 5 May 2014 Revised 25 September 2014 Accepted 30 September 2014 Published online 21 October 2014

ä Implications for Rehabilitation  





There is limited information on challenges faced by parents of children with developmental disabilities in rural Australia. The challenges around lack of information about support systems available add to parental stress as does limited experience, frequent staff turnover and poor attitude of many service providers. There is a need to improve rural service provision. Feasible options within resource constraints include focussed in-service training to narrow the information gap, improve provider-client interaction around attitudinal issues, and uptake of tele-health services. Setting up of parent-professional support groups as well peer support groups using digital technologies will help reduce the sense of isolation for rural carers and minimise impediments related to travelling long distances.

Introduction Families of children with developmental disabilities often struggle to obtain relevant and appropriate information on both the nature of the disability as well as health and other support services. Osborne and Reed [1] report that information needs change over time with comprehensive information required soon after diagnosis; but as the child grows older information needs to be targeted around milestones and progress. Other studies have found Address for correspondence: Rafat Hussain, School of Rural Medicine, University of New England, Pat O’Shane Building, Armidale 2351, Australia. E-mail: [email protected]

that parents feel overwhelmed by the myriad of sources and types of information [2,3]. Mackintosh et al. [4], in a US study using a web-based survey, found that parents of children with Autism Spectrum Disorders (ASD) reported being provided with information from several different sources. Information sources and the number of sources varied by socioeconomic status, with parents with low socioeconomic status reporting access to far fewer information sources [5,6]. The study also showed that information from other parents was a far more common source than information from professionals. Beyond the time and energy expended in seeking relevant information, parents are also challenged both physically and emotionally when accessing disability services, with service

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delivery often being haphazard and beset with organizational issues [7–12]. Access to resources is very important for families to be able to cope, but the processes of obtaining these resources often seems so stressful that they are not always utilised [2,13]. Parents often have to fight for services and may end up in a conflict with service providers [7,14]. In a study by Cho and Gannotti [15] of Korean–American mothers, phone calls were not returned by service providers, and parents reported having to be persistent and demanding, causing extra stress. Parents report getting frustrated when service providers do not address the needs that they see as a priority [16]. Families often feel isolated with the periodic and limited services [17] which further impacts on their sense of social marginalization. In Australia, national level statistics show that in 2009, 7.2% of all people with disability were children aged 0–14 years [18]. Disability rates increased with age, from 3.4% of children aged 0–4 years to 8.8% aged 5–14 years. Two broad groups of disabilities included intellectual disability and sensory impairment or speech disability. Older children were more likely to have intellectual disability, with nearly 61% of children with disabilities aged 5–14 years diagnosed with an intellectual disability compared to 29% of children aged 0–4 years. Older children with disability were also more likely to be affected by mental and behaviour disorders [18]. In general, for most people residing in regional and rural areas of Australia, many services are inadequate, unavailable and unaffordable [19]. Some studies show that health status of rural residents in Australia is poorer [20], which is partly attributable to limited access to health services [21,22]. With regard to support services for people with developmental disabilities, much of the literature on healthcare provision has been examined from the perspective of gaps in service provision. Studies have found that service providers are often over-burdened and, as a result many do not have the time to appropriately meet the expectations of carers who often reported the desire to spend more time in appointments discussing referral options, and learning from service providers [10]. The rushed schedules of service providers can be attributed to the lack of funding and the closure of local institutions [9]. There is an array of underlying issues in rural service provision in Australia that cannot be explained by lack of funding alone. Iacono et al. [23] conducted a study of general practitioners (GP’s) in rural and regional areas. They found that in some rural areas the local GP was the main service provider; in many instances, the only health provider, for people (children and adults) with developmental disability; however, doctors did not necessarily have much training or experience in managing developmental disabilities. There were also problems with the medical professionals not seeing past the disability, which shifted responsibility to support workers and family members. Although some professionals in the study by Iacono et al. [23] took the time and showed a genuine interest in those with developmental disabilities, others had poor attitudes, which stemmed from a lack of understanding and unwillingness or inability to obtain further information. Access to specialist services for people with developmental disabilities is also a big challenge in most rural regions of Australia, particularly in respect to initial diagnosis. There are only a limited number of specialists who provide service(s) outside of metropolitan areas and it is very costly for specialists to visit rural and remote areas [24,25]. There is a lack of choice when it comes to rural service provision, in some cases, there is only one or even no professional representatives in an area, forcing families to travel, sometimes large distances [26]. Some families of children with developmental disabilities need to relocate to cities or live in close proximity of metropolitan centres to ensure that their children have the opportunity to engage in activities away from their home [3].

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There are limited qualitative studies undertaken in rural regions of Australia that have explored the issues of information needs and service provision from the perspective of parents or primary carers of children with developmental disabilities. In a study by Knox [27], conducted on the outskirts of Sydney, families reported having no training when they first found out about their child’s condition. As a result of this inadequate training over a third of participants in the study did not know what to ask professionals, and were reliant on the information they could find from other families. A more recent research study focusing on provider and carer experiences of individual funding (IF) models of disability, interviewed 10 parents of children with disabilities in rural NSW and found that both providers and carers reported a number of barriers in the uptake of IF packages including: lack of information and advice, limited local service options and capacity, higher costs and fewer services [28]. The current paper is part of a larger mixed-methods study on parental perceptions of vulnerability and resilience in rural communities of living with child/children with developmental disability. The aim of the qualitative component was to seek information and give voice to rural carers of children with developmental disability on various aspects of support and services for schooling, healthcare and community supports such as respite and accommodation options. The focus of this article is on describing the perceptions and experiences of primary carers on issues around information needs, perceptions about service providers and experiences of rural service provision.

Methods Setting The mixed-methods study was undertaken in the New England and Northern Rivers regions of NSW, which cover a geographic area of 119 339 square kilometres with a total population of 470 035 [29]. The region is classified as rural (outer regional) on the five-point Australian Statistical Geography Standard (ASGS) classification of Major Cities, Inner Regional, Outer Regional, Remote and Very Remote [30]. There is great variation in composition of regional centres and towns within this classification and consequently in the availability and accessibility of supports services for children with disabilities. Recruitment and data collection The two-staged mixed method study included a postal survey component and face-to-face in-depth interviews. Full ethics approval for both stages was sought prior to undertaking the study. In the first stage, a survey questionnaire was sent out to the parent or primary carer of children with developmental disabilities who were on the database of local disability agencies. The agency databases generally include information on individuals with intellectual and/or developmental disabilities in receipt of health and/or community services. To receive any form of service, a medical diagnosis is required for type of disability and underlying syndrome, and the severity of intellectual disability and sensory impairments. The agency databases (both state and non-governmental) covered a significant proportion of rural areas within the defined rural survey sites. The age range of agency clients varied from infants to adults under 65 years. For the purpose of this study information was sought for carers of children currently under the age of 18 years. To ensure anonymity and confidentiality, the survey packages were distributed to disability agencies in unaddressed sealed envelopes. Each envelope contained the information sheet, consent form, survey questionnaire and a reply-paid envelope. An invitation to participate in the face-to-face in-depth interviews

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DOI: 10.3109/09638288.2014.972586

was included as a separate tear-away page at the end of the survey form. The invitation from requested survey respondents to include their name and contact details for contact by researchers for scheduling the interviews. A total of 500 survey packages were distributed to the agencies. About 4% (n ¼ 19) were returned unopened with ‘‘address not valid’’ postal stamps. Of the remaining 481 survey forms, 10 forms had incomplete information, leading to 51 usable survey responses. The very low response rate is discussed briefly in the limitations sections of this article and in more detail, in a manuscript currently under review that focuses on analysis of Family Quality of Life (FQoL) data. Of the 51 survey respondents, 26 respondents expressed an interest in being part of the qualitative component of the study. From this list of 26 potential participants, an initial group of 10 were selected based on geographical location. These 10 interviews were done in and around the Armidale region, which is located in the northern part of NSW. The rationale for selection was undertaking interviews in small rural towns which lie within a 2–3 h commute to interviews, allowing time for interviews and the return journey on the same day. A second round of interviews (n ¼ 7) was undertaken with a more geographically dispersed group at greater distance and covering north eastern regions of NSW including coastal towns bordering close to the state of Queensland. In addition to geographical variation, we also tried to seek diversity in the sample on the type of developmental disability. The type of disability included was defined by the pre-existing medical diagnosis reported by the parent/carer. The types of disabilities reported for the sample included in the qualitative component were: Down syndrome, Asperger’s syndrome, Autism, Jacobsen’s syndrome, Wolf–Hirschhorn syndrome, Prader–Willi syndrome, cerebral palsy, Tourette’s syndrome and developmental delays due to birth asphyxia. In total, 17 face-to-face in-depth interviews were completed, all of them were conducted at the residence of the primary carer in a rural location. On average each interview lasted between 1 and 2 h during which core issues were explored using an informal conversation style of interviewing. The interview topic guide was developed based on triangulation of information: review of existing literature, findings from the survey and work experience of researchers in disabilities. The topic guide included broad questions on carers’ experiences of raising a child with developmental disability including family dynamics, quality of life, type

Figure 1. Core themes in parental perceptions of issues associated with service provision for children with developmental disability in rural areas.

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and availability of educational and support services and their aspirations and concerns for the future. Consent was sought prior to the interview for the interview itself, as well as for audiorecording of the interviews. Data analysis and coding The audio files were listened to by both researchers for accuracy and completeness before being sent to a professional transcribing service. The transcripts were verified against audio recording for consistency and accuracy by the researchers. In accordance with ethical guidelines governing the research project, no digital or hard copy of the transcript was retained by the transcribing agency. A thematic matrix was developed as part of the initial evolution of coding schema to identify and link patterns of interconnected issues [31,32]. The coding matrix was refined as more transcripts were analysed with the emergence of a set of core themes of family relationships and socioeconomic challenges: experiences of early intervention, schooling and for a small group of participants, post-schooling options, experiences of health and social support services including sources of information; and interaction with health care providers and challenges and barriers to accessing health. The focus of this article is on issues associated with information needs around health, social services, parental perceptions and experiences of service delivery. Three core themes emerged from analysis of data pertaining to: lack of relevant and timely information, perceived inadequacies in interaction with service providers and challenges and barriers to access and use of services. Embedded within the second and third theme were subthemes related to poor staff attitude, lack of experienced staff and staff turnover, limited rural services and long waiting times and a mismatch between needs of the child with disability and services on offer. The main themes and sub-themes are schematically represented in Figure 1. To ensure rigor and improve auditability of findings, the themes were revisited by re-reading the original transcripts in accordance with the principles of qualitative data analysis [32–34]. The final coding schema evolved over many months of transcription, thematic coding and refinement of codes. The sample size of 17 respondents may seem small but qualitative studies often have small sample sizes [35]. While we could have interviewed a larger number of potential participants, due to the

Percieved inadequacies in interacon with service providers

Challenges and barriers to access and use of services

Poor staff atude

Limited rural services

Lack of experienced staff

Long wait mes

Rapid turn over of staff

Mismatch between needs of the child with disability and services on offer

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Table 1. Family characteristics of study participants. Gender of respondents Male Female Relationship to family member with disability Mother Father Grandparent Age of Parents (years) Mother mean (range) Father mean (range) Combined family income Less than $25 000 $25 000–$50 000 $50 000–$100 000 Respondent employment status Casual Part time Fulltime House duties Partner employment status Full time House duties Family structure Two parents One parent or Guardian Number of family members living in the home Two Three Four Five Seven

5.9% (1) 94.1% (16) 88.2% (15) 5.9% (1) 5.9% (1) 40.5 (23–54) 43.7 (25–59) 41.2% (7) 17.6% (3) 41.2% (7) 23.5% 5.9% 11.8% 58.8%

(4) (1) (2) (10)

85.7% (12) 14.3% (2) 14 3 11.8% 23.5% 29.4% 29.4% 5.9%

(2) (4) (5) (5) (1)

In Australia, various income thresholds are used to describe financial hardship. According to the Australian Bureau of Statistics [18], household income of less than $500 per week falls in the lowest quintile. The poverty threshold for a couple with one child is set at $42 117.92 per annum [54]. More than 40% of the study sample reported incomes of less than $500 per week (or $25 000 per annum) which is well below the poverty line. Data from the 2009 national Survey on Disability, Ageing & Carers showed that primary carers of children with disability (predominantly women/mothers) had lower workforce participation rate due to their caring responsibilities [55].

detailed nature of the interviews, by the 15th interview data saturation was beginning to emerge in terms of topic issues, leading to a decision to stop data collection after the 17th interview.

Results The study sample comprised mainly mothers (15/17). In two of these interviews, the father or stepfather was also present. The remaining two interviews were with a father and a grandmother who were primary carers for the child with disability. The age range of children with developmental disability ranged from 4 to 17 years, with the majority of children between ages of 7–11 years. The majority of the participants reported being married or being in a de facto relationship (14/17). The mean age of the parents was 40.5 years for mothers (range 23–54 years) and 43.7 years (range 25–59 years) for fathers. Many of the respondents were involved in house duties (58.8%) with few employed in casual or part-time positions. Further details of the respondents and their families are provided in Table 1. As outlined in Figure 1, three major themes were identified in relation to information needs and service provision. The first theme related to ‘‘lack of relevant and timely information’’ about the range of services within the town, the region and beyond. The second major theme related to ‘‘perceived inadequacies in interactions with service providers’’, which have been clustered into two sub-themes comprising ‘‘poor staff attitude’’, and

‘‘inexperienced staff and rapid staff turnaround’’. The third major theme related to ‘‘challenges and barriers to accessing health services’’, with participants providing a large number of comments on a range of issues which have been grouped under two sub-themes ‘‘limited services, long waiting times and mismatch between needs and services’’, and ‘‘accessing services at a distance’’. Lack of information about services Almost all the study participants raised concerns about the lack of adequate and timely information. The information gaps were not only limited to health services, but also to other forms of social support services as well. Most of the participants reported that they found out about services from others, usually another parent in a support group. However, not all the participants had access or time to attend support groups. Some participants, especially those who had relocated from various towns and now lived on farms located at some distance from local town centres, had almost no information on the range of services and/or about support groups. You don’t get told anything. Like I didn’t know about FACTS funding from DADHC. I think its two thousand you could buy something that your child needs, if you can’t afford it or whatever. Like a TV or a DVD player. I didn’t know about that. I’m still waiting on the information for it. (Parent of 9-year-old child with ASD and ADHD). We weren’t told about the social worker when she was born and all the [other] times we were in hospital with her having massive seizures we were never told about the social worker, I didn’t find out until I met her socially and she became a friend. (Parent of 11-year-old child with Wolf–Hirschhorn Syndrome). Inadequacies in interactions with health service providers Poor staff attitude Some of the parents, both of younger and older children with disabilities, lamented the apparent lack of empathy and expertise demonstrated by doctors in dealing with their child’s disability in a holistic manner. Many participants reported that their interaction with health providers was positive during acute needs such as hospitalisation. However, beyond acute care, many participants felt that the doctors had little training in regard to being able to provide ongoing care for multiple health issues faced by many children with developmental disabilities. In particular, doctors as well as other allied health staff were not able to fully understand the impact of behavioural issues on other aspects of disease management, including non-compliance with medication due to severe side effects. At times it seemed to many participants ‘‘the doctors did not care and felt the problem was the parent who had ‘high expectations’ of the medical professionals’’ or in other instances some felt that ‘‘because they were articulate and could express the issues well, the problem was put back in their lap, for surely as a parent they knew enough on how to deal with it’’. However, in many instances, participants actually felt quite illequipped to manage on their own, but they kept quiet due to concerns that this would reflect poorly on their competence, which may compromise the doctor–patient relationship. And other professionals like therapists . . . I find they’re all a bit cagey . . . You know, when ‘‘oh, you’re intelligent; you’re articulate so you know what’s going on’’. . . But I don’t always. . . . there’s still that hiding within the system, so I think the system itself is really disrespectful to people with disabilities and their advocates . . . We’ve had some horrible

DOI: 10.3109/09638288.2014.972586

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sort of experiences in hospital where it’s definitely not a partner in anything... So some of it’s been really good when your child is critically ill, then they’re very, very good. But if there’s something that’s not critical, and they [doctors] don’t quite know what to do, then it turns back onto the parents to justify why you’re even there (Parent of a 8-year-old with Down Syndrome). . . . the wider medical services provided, they’re very poor, or their understanding of autism is very poor. The result is, you remain in hospital 24/7 with your child, or I remained in hospital with E in the medical ward, in a room . . . they didn’t put him in the children’s ward because he’s autistic . . . the focus on hospitals and healthcare in particularly in the health model is, protect our workers! (Parent of a 17-year-old with Autism). While many parents had positive experiences of information and service provision by smaller non-governmental agencies operating in the region, the opposite seemed to be the case with the more well-resourced governmental agencies. With regards to the latter, it was often a case of who you know, and how to steer safely through the somewhat unwieldy bureaucratic processes, which compounded the stressors associated with rural living. It was the psychologist – . . . She was the one who actually pinpointed what was wrong with K. No one else could do it. She came and spent time with the family, and sat with him, and spent time with K by himself . . . just watching him play and how he played, and talked to him . . .. That was great. She was the only one really who treated us like a partner – like let’s work on this together. (Parent of a 10-year-old with ASD and ADHD). In general, advice from complementary and alternate therapy providers did not sit well with more established service providers. One of the issues for disagreement and discomfort for some of the participants was around diet and nutritional advice. Some of the participants had tried changing diets based on information from the internet, or from other parents and in one instance from a highly qualified scientist who chose to practice as a complementary therapist. Both GPs and paediatricians were seen as lacking training and experience in dietary management and in some instances provided contradictory advice. However, they also were reported to be highly sceptical of any ‘‘new age’’ diets including ketogenic diets, whereas the parents felt that they had observed a noticeable difference in the child’s behavioural issues by withholding/providing certain types of foods. Inexperienced staff and staff turnaround While many people in rural communities are aware that there is high staff turnover in healthcare and support services, it is only when they are faced with an ongoing health issue requiring longterm care that the full impact of the limitations and deficits of the rural health system become obvious. Many parents in the study felt a sense of frustration and outright despair at the lack of experienced staff to provide healthcare services in rural regions. While most of the angst was around the relative inexperience of allied health staff such as speech therapists, occupational therapists, social workers and counsellors; there was also concern about the lack of experience of medical doctors and specialists. Most parents with child/ren with developmental disabilities had experienced problems due to limited staff and frequent turnover of staff when seeking services for their child. The pattern was the same whether they lived in a relatively bigger rural town with

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supposedly more services, or in smaller more remote towns, or whether they lived on a farm which was located quite some distance from the closest rural town. . . . whether they’re just a little bit young and you know some of them look as if they’ve only just come straight out of university . . . they lack of experience. For the average child perhaps they might build that rapport with them but someone with a disability you need to . . . whether they need to go and have a little extra training or be a little bit more experienced before they sort of put them into that position because it’s been fairly counter-productive. (Parent of a 9-year-old with Autism). The first time we went to hospital and there was a social worker there. At that point in time I’d been told that my child’s brain was shrinking and I was contemplating whether or not that was to [lead to] death, so that was a level of conversation I was having with that social worker. I had just assumed that she’d be putting anything I said to her in a file to do with me, but it was actually being put in my son’s file for any nurse and anybody to read. How I was coping with the potential of my child dying. (Parent of a 4-year-old with complex needs).

Challenges and barriers to accessing health services Limited services, long waiting times and mismatch between needs and services The majority of the participants had experienced many problems and difficulties in accessing the very limited range of services on offer. The problem was worse when accessing occupational and speech therapy services, due to inordinately long waiting times; and when services were available they were limited in duration with families again put on waiting lists. While there is a lot of rhetoric around the importance of making early intervention services available, most parents found that their child had missed critical windows for development and improvement due to lack of services. In some instances, service providers were available as private practitioners, but families often did not have the resources to pay for the ongoing expense. The services, yeah we don’t get cause we’re on a waiting list through the community health service, so he doesn’t get any physio or any OT, any speech, unless we decide to pay for it . . . and we can’t because we’re on low income. So he gets nothing at the moment . . . . There are not enough workers on the far north coast to help all the families that need it. There’s so much need for behavioural support that the waiting list once again is way too long. . . . When you’ve got a child with behavioral problems . . . you need the help while it’s happening. The funding here is non-existent . . .. We’re the last ones in the bucket. (Parent of a 10-year-old with ASD and ADHD). Some of it [services] it’s really hard to access ‘cause at the moment we don’t have . . . the Speech Therapist comes probably once in a blue moon to school. We’re still on the list for the Occupational Therapist because the one we had, they changed areas. So we’ve gone back down on the list again of waiting to be assessed. I can’t access Community Health because I’m under DADHC. They [service agencies] get so bogged down in their administration that they don’t have an opportunity to actually present a service. And if you want one you’ve got to go and pay for it yourself. And virtually with all the other expenses you can’t afford it. (Parent of 9-year-old child with ASD and ADHD).

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Accessing services at a distance

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For many parents, the lack of services available in the town they lived in meant that they had to travel long distances to seek specialist services. As mentioned earlier in this article, lack of health services is a major issue across most parts of rural Australia and patients and their carers often have to travel to major urban centres for diagnosis and treatment. In the case of family carers of a child with developmental disability, this was particularly problematic either due to the limited family income including carer support allowance and/or the behavioural challenges associated with the child’s disability. For some of the participants, the drive to and from the town centre to farming properties located in the hills made driving on winding country roads especially after dusk a dangerous proposition. . . . There was very, very, little we could do ...we’re limited with our services. I mean I guess if you lived in somewhere big you’d have probably better opportunity for some of those services . . . We found ourselves going to Lismore [small regional centre 158 km away] or to Toowoomba [large regional centre in state of Queensland, 2.5 hours drive one way]. We went to Toowoomba ...for his hearing because we couldn’t get into the one at Lismore for many, many months. But it meant that we had to go up the night before, stay in a night’s accommodation... and we found [they] only did half the testing anyway so then we had to go home and come back a few weeks later and do the same thing to finish off the testing. (Parent of a 9-year-old with Autism). . . . I’ve gotta go all the way into town, to do that sort of thing [access support services]. He gets home here after school, he leaves at eight o’clock in the morning, and he gets home here at half past four. And there’s no way known . . .. oh, I could pick him up from school and then go in [to see therapist]. But then you come down here when it’s getting dark . . . You should see my car . . . I’ve hit roos [wild kangaroos]. I actually don’t like going out if it’s dark on these roads, ‘cause they’re a bit too dangerous. Everybody thinks like an hour from town, but it’s down and around, and up and the terrain makes it harder. (Parent of a 8-year-old with Aspergers on a remote farm property). For some families, the travel back and forth becomes such a huge challenge that at times they had to uproot their families and physically relocate to a major metropolitan centre in the hope of having better access to services. I’ve had to move to Newcastle [5 hours driving time one way], even though I didn’t want to and I was then leaving all of my support network and all of our family and just myself and my child moving . . .. There was just not enough help in town for my child. He was put on a waiting list for speech therapy and OT and everything when he was 10 months old, when he first started having visible seizures, and we didn’t receive speech therapy . . . till he was two and a half years old (Parent of a 6year-old with dual diagnosis and challenging behaviours).

Discussion The results of our study show that disability services and the support systems are crisis driven, the supports available are inadequate and inflexible and administrative services create barriers due to unnecessary bureaucracy. The overwhelming majority of participants had negative perceptions of service provision and service providers. Information was limited, untimely and at times of little relevance. In relation to health

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services, the participants’ views were largely around barriers and challenges. This needs to be seen in the context of (a) rural services being limited and run often in an ad hoc manner with high staff turnover and (b) there are not many studies where rural parents and carers have an opportunity to voice their concerns. Therefore, many carers were angry, frustrated and exhausted from trying to get better access and quality of services. Self-help groups that have been found to be beneficial for children with special needs [36] are less likely to be successful due to the vast distances and limited time. However, there are potential alternatives with the widespread availability and increasing role of digital technologies. This issue is discussed, in detail, in a later section. Ideally disability services should be empowering, responsive, flexible, proactive, preventative, informative, targeted, coordinated and included in insurance, though often this is not the case [37]. It has been reported that children with developmental disabilities living in rural or isolated areas receive services that do not correlate with their needs, or in some cases, they receive no services at all [38]. Having a partnership approach with health and social support service providers can be empowering for families, and past research has identified the provision of sufficient information, listening to parents and working in equal partnership as key professional attributes [16,27,39,40]. To improve service provision, there is also need to improve pre-service and in-service training for health providers. Along with training of staff, training of parents and/or carers in the management of disability has been found to be useful [41–43]. Two studies undertaken in rural regions in the state of Victoria (Australia) show that focused professional-parent network programs can alleviate some of the information gaps and also create a sense of partnership amongst primary carers of children with disabilities [44,45]. Some of the perceived negative perceptions of service providers were related to staff inexperience and turnaround, which did not allow for professional relationships to be formed between the carer and the service provider. High staff turnover leads to higher costs financially and also negatively impacts on individuals receiving care [46]. As reported by other rural studies of service provision for people with disabilities, it is difficult to build relationships with clients when there is a high staff turnover [40,47]. Lincoln et al. [12] in their study of allied health workers in the state of NSW found that practitioners in rural and remote areas feel the pressure of an immense workload, they can experience frustration and embarrassment at the long waiting lists, and they lack the ability to prioritise patients themselves due to policy constraints. These feelings are compounded in small communities when professionals see their clients around the township [48]. While the issue of staff turnover in allied health has been a vexed problem for rural regions of Australia, some of the time constraints and sense of disempowerment felt by professionals can be reduced by setting up group information sessions, through parent-professional programs, which have been shown to be effective and beneficial [44,45]. The upcoming disability reforms in Australia as part of the proposed National Disability Insurance Scheme (NDIS) will lead to greater choice for families in relation to funding being unbundled from service providers [49]. Increased competition is likely to lead to more information being provided by service providers, which is both relevant and timely. Along with increased choice there is likely to be an improvement in staff attitude. In the current service model to be replaced by NDIS, services are provided through a combination of public and contracted out private sector agencies, with the latter receiving block funding per person for a range of services. In rural areas, consumer choice is limited as there is limited competition for improving quality of services in the private sector. Under the proposed NDIS, funding will be allocated to individuals with disability (or their guardians)

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DOI: 10.3109/09638288.2014.972586

who will have full choice in purchasing services. A consumer-led model has been shown to improve staff attitude as they compete to provide better quality services. However, some of the underlying structural issues in rural service provision that are unlikely to be fully solved by individual funding model proposed under the NDIS include the problem of staff turnover and lack of specialist services [50]. Apart from investment in rural health infrastructure and career pathways to make rural health more attractive, innovation in services through greater use of technology backed by specialist expertise through a network of developmental disability clinics in rural areas could greatly reduce some of the service provision stressors faced by rural families with children with disabilities. Telerehabilitation has the potential to aid people who live in rural areas that need the attention of specialists. For carers, transporting care recipients to specialists carries a heavy financial and time burden. A study by Tindall and Huebner [51] looked at speech therapy delivered by videophones and found that this method alleviated some of the burden of providing care, and produced similar results to face to face consultations. However, the use of digital technology is still limited by educational barriers and socioeconomic status [52,53]. In a recent study of occupational therapists in rural NSW, while the therapists used digital technology for their personal networks and professional development, there was limited use of technology for therapy provision. The reported barriers related to age and technology preferences of the provider, but equally important were issues of limited internet connectivity, training and support as well perceptions about lack of acceptance by clients [53]. As digital technology becomes more accessible both in relation to bandwidth and accessibility through the major telecommunication reform under the aegis of the national broadband network (NBN) program, this barrier is likely to become less of an impediment for service provision both by providers and end-users in rural Australia. In this context, setting up online parent-toparent peer support programs for parents and carers of children with disabilities, for whom geographical distance is a major barrier in attending support groups, is also a worthwhile endeavour. Some limitations of this study need to be acknowledged. The study was open to all families of children with developmental disabilities that were listed on the databases of disability agencies as well as the regional office of the state agency Department of Aging, Disability & Home Care (DADHC), however none of the participants who expressed an interest in being part of the qualitative interviews were indigenous (Aboriginal) or belonging to a different cultural group. It is plausible that the information and support needs of these families are greater. It is recommended that future studies make these groups an explicit part of the sampling criteria. The sample size, though small, is consistent with the principles of qualitative research where information collection is stopped when data saturation is reached. However, we acknowledge the limitations of a low response rate to the survey component. Anecdotal information from parents participating in the qualitative component revealed that many of their peers did not fill out the survey due to paucity of time and being unsure as to whether negative information may get back to service agencies (despite this being explicitly clarified in the Information Sheet). In hindsight, the aims of the study and study protocols could have been publicised better through local media to assist with information through multiple channels, which may have led to a higher response rate. Despite these limitations, the study interviews yielded information-rich data that overwhelmingly shows the need for narrowing the existing information gap, improving communication between service providers and end users as well adopting e-health consultations to ameliorate chronic workforce shortage of rural service providers.

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Acknowledgements The authors would like to thank family caregivers and the disability agencies for their time and are grateful for their contribution. A special thanks to Dr Annie Carn who assisted with the data collection for in-depth interviews.

Declaration of interest The authors and associated staff have no conflict of interest with any funding agency or in relation to use of certain survey tools. The project was funded by a research grant from the Australian Foundation for Research on Intellectual Disabilities (AFRID). Logistical support was provided by regional disability organizations.

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