Disability Service Access Barriers for Refugees 

Disability Service Access Barriers for Refugees | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Disability Service Access Barriers for Refugees Angela Dew, Mahmoud Murad, Susan Taylor, Joanne Watson, Louisa Smith, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7172241/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 13 You are reading this latest preprint version Abstract Background At a time when refugee numbers are increasing worldwide the human rights of refugees with disability are topical. In Australia, government policy changes have led to increases in the number and diversity of people from refugee backgrounds entering the country. However, a mixture of national and state-based systems for refugee screening, assessment and support create barriers for people from refugee backgrounds accessing health, disability, housing and refugee support services. This study examines experiences of Syrian and Iraqi families with refugee background in New South Wales (NSW) and Victoria, Australia, caring for a loved one with disability. The study explores barriers encountered by people from refugee backgrounds at the intersection of health, disability and refugee settlement services. Methods A participatory action research method was used to collect data from 39 participants from refugee backgrounds in NSW and Victoria supporting someone with disability. Four online and one face to face workshops were facilitated by a co-researcher with disability communicating in Arabic and English. Participants were asked about experiences accessing refugee support services in NSW and Victoria. Results The Levesque, Harris and Russell framework was used to categorise participant experiences of systemic and service user barriers when seeking health, disability, housing and refugee support services. Barriers included lack of service system transparency, difficulties in accessing information about services and supports, and participant mistrust in the service system and those who worked in it. Participants’ cultural and language needs were not understood by service providers. Some participants’ understanding of disability and appropriate service responses varied from the Australian perspective, and their expectations of the service system’s focus impeded their ability to seek out services and support, with understandable emotional impacts. Conclusions The Levesque framework is useful for understanding practical service system barriers and identifying possible solutions to enable people from refugee backgrounds caring for someone with disability to seek out and engage with services and support. Culturally appropriate health promotion, service system coordination, and staff training in respect and understanding of the rights of people with disabilities from refugee backgrounds and the refugee experience are needed to improve access. Refugee settlement disability service system barriers Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Figure 6 Figure 7 Introduction The number of people seeking asylum globally has increased in recent years, with the United Nations High Commission for Refugees (UNHCR) identifying 2.4 million people in need of urgent resettlement in 2024, and this number is expected to further increase ( 1 ). Since 2017, people applying for refugee status from Iraq and Syria consistently received priority under the Australian Humanitarian Program ( 2 ). At the same time greater emphasis has been placed globally, including in Australia, on the rights of refugees with disability ( 3 ). The health waiver introduced by the Australian Government in 2012 meant that people applying for permanent protection visas no longer had the potential cost of supporting their ongoing treatment and support assessed as part of their application (Australian Government, 2012). This removed one barrier to people with disability being granted protection visas, contributing to an increase in prevalence and diversity among those accepted into Australia as refugees ( 4 ). All migrants require some level of assistance to understand the new systems they must navigate to access the services and support they need in their new country. People from Syrian and Iraqi refugee backgrounds fled totalitarian regimes where their country’s infrastructure was disrupted and fragmented due to years of corruption and civil unrest ( 5 ). Resettling in a new country such as Australia where there are national and state-based systems for delivering health, disability, education, transport and other services requires a fundamental change in thinking and approach. Australian health, settlement and disability support services are diverse and operate within siloes at different government levels. The Australian health system is federally funded. People with refugee status have access to free or low-cost health and medical services through Medicare. Most health services, including specialist refugee health services, are administered at State/Territory level, providing hospital and community-level health care. The Federally-funded Humanitarian Settlement Program delivers services that respond to needs related to social determinants of health, through non-government service providers. The National Disability Insurance Scheme [NDIS] provides individual funding to those assessed as living with permanent and significant disability, for reasonable and necessary support from non-government and private providers, to meet goals for participation and inclusion in society. Centrelink is the central agency that provides social security payments and services to Australian citizens and specified visa holders. These systems are complex and not always well coordinated or connected, meaning access is complicated ( 6 ). The current study builds on evidence from prior research that people from refugee backgrounds with disability face challenges in gaining access to disability and healthcare supports and community services (author details withheld for blind review). In the current study the authors frame the experiences of people with disability from refugee backgrounds who have resettled in Australia within the Levesque, Harris and Russell ( 7 ) conceptual framework of healthcare access. The framework uses five determinants of either facilitators or obstacles to accessing healthcare and considers the impact upon individuals of ‘the social, cultural, economic or physical factors acting at macro and micro levels’ ( 7 ). Levesque and colleagues proposed that access to health services is the nexus where multiple supply and demand factors come together as enablers in contacting and obtaining healthcare. As shown in Fig. 1 , access is defined by Levesque, Harris and Russell ( 7 ) as the opportunity to identify, seek, reach obtain or use healthcare; to reach, obtain or use healthcare services; and to fulfil healthcare needs. Figure 1 depicts the Levesque, Harris and Russell Framework on Patient-Centred Care Levesque, Harris and Russell ( 7 ) further argue that approachability, acceptability, availability and accommodation, affordability and appropriateness are determinants of access to healthcare. These dimensions of accessibility correspond with and interact with five dimensions of people’s abilities to use the health service system: ability to perceive, ability to seek, ability to reach, ability to pay, and ability to engage, thus producing a dynamic framework presenting access as an interactional process ( 8 ). This process incorporates health systems and health service providers along with individual health service users, communities and populations. The framework identifies how perceptions, healthcare behaviour, the use of healthcare services, and the systemic consequences of people’s healthcare decisions impact on healthcare access by examining the interaction between the dimensions of service accessibility and the dimensions of service user abilities to use health services. When applied to published studies into healthcare access, the Levesque, Harris and Russell ( 7 ) framework highlights the interactions between the barriers and enablers attributable to both service providers and service users. For instance, a study by Shrestha-Ranjit, Payne ( 9 ) identified poor provision of interpreting services and lack of service preparation in primary healthcare practices for Bhutanese women from a refugee background in New Zealand. However, the study did not consider broader dimensions included in the Levesque, Harris and Russell ( 7 ) framework such as service appropriateness or the ability of Bhutanese women from a refugee background to seek, reach or engage with services. Some critics point to ambiguities across the dimensions of access in the Levesque, Harris and Russell ( 7 ) framework, possibly contributing to skewed findings on healthcare access ( 8 ). For instance, a barrier to service approachability such as attitudes and behaviour of healthcare staff may in some instances be interpreted also as a barrier to acceptability ( 8 ). However, researchers into access to digital healthcare ( 10 ) and other service systems such as family violence services ( 11 ), have demonstrated that Levesque, Harris and Russell’s ( 7 ) framework can provide guidance on aligning health and other service systems with the needs of service users. An overview of studies on how people from refugee backgrounds use health systems ( 12 ) found barriers included practice issues such as communication and inconsistent engagement of interpreters, lack of service collaboration, and service knowledge deficits such as lack of cultural competency. Almost all their reviewed studies (8/9) reported language difficulties as a barrier to health service utilisation for people from refugee backgrounds. Two of the studies reviewed by Prajuli and Horey reported the barrier of low health literacy ( 13 , 14 ) and another identified a lack of confidence in seeking healthcare ( 15 ). Other barriers to people from refugee backgrounds accessing healthcare included the influence of family and peers ( 13 ), low levels of trust in the health system ( 14 – 17 ) and a sense of powerlessness ( 18 ). Beyond initial resettlement, barriers to ongoing access to healthcare can perpetuate health disparities for people from refugee backgrounds ( 19 ). A scoping review by Rfat et al in 2023 identified 34 international publications from 2000–2022 related to service access barriers for people with disability from refugee backgrounds ( 20 ). Based on these studies, Rfat and colleagues identified the need for a broad range of service system changes such as inclusive or special education for children and young people; accessible, affordable and culturally informed healthcare; vocational training and employment opportunities; social benefits and access to the welfare system and advocacy; and social acceptance and inclusion with mainstream society. Whilst health and medical needs are an important factor for people with disability and their families from refugee backgrounds, these findings point to the many other social, economic and environmental factors that contribute to equity in the health status of any population ( 21 ). An Australian qualitative study conducted by (Authors Own, 2023) with eleven family members of people with disability from Syrian and Iraqi refugee backgrounds identified the broad scope of service access needs. In this study, the authors emphasised the critical advocacy and coordination role of refugee support services in facilitating both early access to medical and health care for humanitarian entrants, and in navigating ongoing access by people from refugee backgrounds to the disability service system in the absence of engagement by disability services. Reflecting on the global absence of advocacy and service coordination for people with disability from refugee backgrounds, Rfat, Zeng ( 20 ) also emphasised the vulnerability that comes with the intersection of refugee status and disability, and called for “cultural brokers” ( 20 ) to bridge, link or mediate between groups or persons and improve equity and cultural competency. In Australia and elsewhere, people with disability experience poorer health outcomes and higher levels of disadvantage than non-disabled people ( 21 ), as do people with disability from refugee backgrounds ( 22 – 24 ). Researchers have argued that the intersection of refugee status and disability places policymakers and practitioners in Australia and globally at the nexus of human and disability rights discourse ( 25 ). In this paper, we apply the Levesque, Harris and Russell ( 7 ) access framework to families from refugee backgrounds with disabilities from Syria and Iraq, broadening the definition of healthcare to incorporate disability support and other social determinants of health. Methods Researchers took a participatory action and co-research approach to the study, engaging with people with lived experience of disability and refugee status and those who supported them. The study received ethics approval from the Deakin University Human Research Ethics Committee (2021 − 301) and all participants provided written or verbal consent. The co-researcher/Project Manager was an Arabic speaking man with a disability from a Syrian refugee background. The project team included eight academics from two universities in New South Wales and Victoria (Australia), the project manager, and representatives from seven partner organisations (names removed for blind review). In Stage 1 of the research, the project team developed a one-page plain language summary of the service access issues raised in the refugee literature aligned with Levesque’s ( 7 ) service access dimensions. The plain language summary of service access issues, previously published separately ( 26 ) was translated into Arabic. In Stage 2, participant recruitment took place through partner organisations and through the co-researchers’ networks, using flyers and participant consent forms translated into Arabic. The service access summary (see Supplementary File) was sent to Stage 2 participants ahead of the workshops to help them to prepare their thoughts prior to the workshops. Five workshops were held, four online and one face to face in Melbourne, with a total of 38 people aged over 18 from Syrian and Iraqi refugee backgrounds with disability and family members living in NSW and Victoria. Participants were aged 31–40 years (55%), 41–50 (13%), and 51–60 (32%). The workshops were facilitated by the Arabic-speaking co-researcher. One non-Arabic speaking member of the research team attended each workshop. Workshop discussions were informed by the service access summary allowing participants to freely express related priority concerns drawn from their own lived experience. Discussions were audio-recorded, transcribed and translated into English language by an accredited professional translation company. Additionally, an artist with lived experience of disability from a Syrian refugee background attended as a visual documenter (see illustrations in Results). Researchers imported the English language translations into NVivo12 and deductively coded this data in alignment with Levesque, Harris and Russell’s ( 7 ) five dimensions of access: approachability, acceptability, availability and accommodation, affordability and appropriateness. The data was interpreted by reference to the service access dimensions and the concepts associated with each dimension, as well as to the dimensions of service user abilities and associated concepts as described by Levesque, Harris and Russell ( 7 ). In Stage 3 of the project a co-design approach was used to design resources to improve access to community services and supports for people from Syrian and Iraqi refugee backgrounds and to better target resources to their needs (author details withheld for blind review). A co-design process developed six short, animated Arabic-language videos accessible via social media channels regularly used by Iraqi and Syrian communities [video link withheld for blind review]. Information about oral hygiene and regular dental care for people with disability was also prepared in postcard format. Resources were disseminated through partner organisations, places of worship, community centres, dentists, and general practitioner clinics. The project team and resources were awarded the inaugural New South Wales Multicultural Health Communication Refugee Resources Award 2023. The videos have since been translated into five other languages used by people from refugee backgrounds living in Australia. This paper focuses on the Stage 2 workshop findings related to service access as described by Levesque, Harris and Russell (2013). Findings The coded workshop data aligned well with the dimensions in the Levesque, Harris and Russell (7) framework. The dimensions of acceptability, approachability and appropriateness were the most well-populated in the data. Key service types with which participants were concerned were health, disability, housing and refugee services. Results are structured by breaking down each dimension into its components and considering both sides of the framework – firstly the service system and secondly the service user perspective. Dimension 1: Approachability. According to the Levesque, Harris and Russell’s (7) framework, approachability relates to service transparency, outreach, information, and screening. Transparency. Participants were confronted by an opaque and seemingly arbitrary separation between Australian disability and health systems, which many did not understand. What is the labyrinth that they make between the services, that sometimes they told you that it is the disability, all of a sudden they tell you it is a health… service… (Male participant, Melbourne Workshop). Even within one service system such as the disability sector, participants were confused about the differences between the funding entity - the NDIS, and the disability providers from which they could purchase supports and services. They also reported that providers were not equipped or interested in providing services to people from refugee backgrounds highlighting a lack of understanding and preparedness within the sector. I thank the Australian government for the services it provides to us, but there are many gaps. Unfortunately, for example, the companies that the NDIS deals with, they never deal with us, and they do not provide us with services which [are] in the plan of the NDIS (Male participant, Online workshop 2). Figure 2 illustrates the confusion and maze of bureaucratic processes experienced by people with disability in attempting to access the NDIS. Outreach. Common to many participants was the necessity of doing all the work themselves to find out how to access disability or health services, with the exception of settlement support services and some NDIS services. No, frankly, I did not register, no one told me to register [for] government housing (Male participant, Melbourne Workshop). The people here are not helpful. They do not direct others to go to certain people or places (Male participant, Online Workshop 3). It was common for participants to find themselves on long waiting lists for services that were difficult to find and which they urgently needed. For instance, housing: We have just come to this place [Australian city] and we do not know these matters [how to apply for public housing] nor how to get help regarding this matter and we are not directed to go to someone or some organisation for services (Female participant, Online workshop 4). Everything was difficult, as you need to know so much information, and where to start from if you want to submit and what’s the right thing to do. [You need] someone to guide you to the way, where to start it from and how to reach what you want. (Female participant, Online workshop 5). However, as mentioned above, there was some evidence of effective outreach practice from settlement support organisations and NDIS service providers: They [settlement support organisation] went to the [refugee health service] and talked with them, the [refugee health service] made reports and came to the house and checked (Female participant, Online Workshop 4). They [the settlement support organisation] tell you from the very beginning that we have started with the services and we are going to help you with such and such, and they would ask you about what [is lacking for] you and so you can tell. Out of my experience and what happened with me, they came with me and did it once more and asked me about what [is lacking for] me, what we haven't completed yet, and what [do I] need. So it was them who started the initiative (Female participant, Online Workshop 4). Information. Participants were not systematically informed about who to approach for health or disability services and support. Rather, they found the information in a piecemeal fashion. When we arrived, it was vague information that we heard from people, but we didn't hear it from the family doctor. You are disabled; you are supposed to be registered with NDIS. I mean, it has been four years [since our arrival but only] now, I applied to NDIS (Male participant, Melbourne Workshop). There are a lot of things which they should even explain or let you understand them in detail. I feel like my eyes were closed; I didn’t know anything at all. When I started figuring things out, I said “where have I been?”, and there are still other things that we don’t know about (Female participant, Online Workshop 5). Figure 3 illustrates workshop participants’ feelings of confusion and not being supported to access services. For these reasons, some participants said they made a point of passing on information to other people from refugee backgrounds who did not know about the disability support system. If I see a person who needs [disability support] I give him the number and tell him to register with the NDIS (Female participant, Melbourne Workshop). Translated information was critical in enabling participants to understand how to access services: Providing Arabic language resources is very important, I mean, when they also provide Arab service providers with a guide, it means that it is easy for you to reach [services] (Male participant, Online Workshop 1). I told you from the very beginning that it's a language issue. Any paper which you sign…when they bring you a contract with countless papers, how would you know its content? There has to be someone that helps you on that, they see what papers we are signing (Female participant, Online Workshop 4). Screening. Participants recounted being refused services at the first point of screening, but with little or no support with next steps: My wife is psychologically upset and she is following up her condition with the doctors. When I submitted the request [to the NDIS], it was rejected right away. They said she didn’t meet all the requirements. We have to go to specialist doctors (Male participant, Online workshop 1). Centrelink does not accept that I have a disability and I am a disability patient (Male participant, Online workshop 2). I am sick with joint [pain]. I went for a medical check with three or four doctors, and each of them transferred me from one hospital to another and they did not accept my case (Female participant, Melbourne Workshop). If they were able to get past this first barrier, participants reported experiencing delays in accessing screening processes: For us who are disabled, those with special needs, when we go to the hospital to check up some health problems, we are given long [wait time for] appointments. We cannot wait for these appointments (Male participant, Melbourne Workshop). First thing, the specialist occupational therapy had a waiting list. It takes time. I waited for a whole year for them to send me to specialist therapy [which lasted] for 6 months (Female participant, Online Workshop 2). Several months ago, I did the tests on the basis of which they wanted to create a care program for me. They did tests on the basis of disease. I waited for the tests for six years (Male participant, Melbourne Workshop). Service users’ ability to perceive. As well as the accessibility of service systems and service providers, Levesque, Harris and Russell (7) suggest that service accessibility is enhanced or limited by the ability of service users to perceive their own healthcare needs, and by their health literacy, health beliefs, trust and expectations (see Fig. 1). In this study, cultural values from the country of origin of people from refugee backgrounds influenced their health literacy and ability to perceive their own needs. The concept of disability was challenging for some participants: I do not know. When they sat with me, I said this is a defect. And when they came to me, I told them this is a defect. We do not have this thing in Iraq (Female participant [whose husband suffered a stroke], Melbourne Workshop). Lack of trust in the Australian health system was evident in one participant’s expressed intention to leave Australia to access health care overseas because of poor family health outcomes: This is my only solution. Frankly, I lost the girl's [participant’s daughter’s] eye. The second girl's teeth were lost. I am communicating with them in Istanbul. I want to go there (Male participant, Melbourne Workshop). Some participants’ lack of trust in the health and disability care system was because they felt pressured to do things that did not feel right, like making decisions or signing documents without enough information, or because they did not perceive Australian healthcare to be of a high standard. He [a housing tenancy manager] made me sign in a paper without knowing about it (Female participant, Online Workshop 4). In fact, health services are among the most important services that any person needs. What I mean is that health services are generally not of the required standard (Male participant, Melbourne Workshop). Participants understood their responsibilities to increase their knowledge and awareness of health and disability systems: We have to be aware and know what’s going on so I respect them and they respect me, and I trust them and they trust me. One needs to know but I admit to you that I'm completely unaware about [many things]. (Female participant, Online Workshop 4). However, participants who had received considerate and respectful approaches by service providers reported that this enhanced their trust in the health and disability service systems: They [service providers] unbelievably take these things into account, they also respect people so much and others' cultures which means they respect cultures of people who they don't accept so much. They didn’t change their treatment to me. I once was at an Australian doctor for physical therapy and he asked me if I accept that he touches my body. So imagine how much they take that into account, I was surprised. So there's respect and cultural understanding in terms of our customs, traditions, and religions. There's no problem with that. (Female participant, Online Workshop 5). Dimension 2: Acceptability. Acceptability is defined by Levesque, Harris and Russell (7) as the fit between service providers and users in terms of values, norms, culture, and gender. Values, norms and culture. Prior to becoming refugees, participants spoke about their experiences in Iraq and Syria in terms of ongoing war and upheaval, and powerlessness. We did not have rights there, I worked for 18 years in Iraq, I went empty handed. (Female participant, Melbourne Workshop) I just didn't know what our rights were... We didn't know that we had rights (Male participant, Melbourne Workshop). Cultural and language suitability were critical to the acceptability of disability and health services for people from Syrian and Iraqi refugee background seeking care and support. Service providers, including refugee services, were not always aware of the different languages spoken by Syrian and Iraqi refugees (Chaldean, Assyrian or Syriac), and sometimes assumed any Arabic-language interpreter would be suitable: I once had a fall so I went to the [refugee health service] and requested Chaldean translator but they brought me an Iranian who was interpreting in Assyrian, so I didn’t understand him (Male participant, Online Workshop 4). Yes, they may bring an Assyrian translator from Iran for the Syriac which Iraqis and Syrians wouldn’t understand (Male participant, Online Workshop 4). I also have difficulty with the translator in his knowledge of Iraqi Arabic (Female participant, Melbourne Workshop). Also based in the Syrian and Iraqi culture was the expectation that when a family member has a disability, care and support is needed by the whole family and not only by the person with disability: I have a child who has a disability, but frankly, the family … If one person in the family is disabled, I see the whole family as if they are disabled (Female participant, Melbourne Workshop). They focus on the disabled person, but the rest will definitely be harmed. It is impossible that the rest of the family members who are healthy in the family will not be harmed by the presence of this disabled person (Female participant, Melbourne Workshop). I mean my husband is the disabled person. I mean, when the head of the house is disabled, they [services are] supposed to help [more]. But I didn’t see this (Female participant, Online Workshop 3). This clash of cultural values suggests that some service providers were not familiarising families caring for a person with disability with the suite of family support services or helping them to make connections with family supports. In effect, this approach prevented people with disability and their carers from taking the first steps in seeking the services they needed to assist with caring for their loved ones. Now I am looking for someone [to] live with me because I am a lady who needs someone to live with me like my mum or my sister for all the time (Female participant, Melbourne Workshop). I came to Australia and left my mother and father. I presented a request for my mother to come here so that she could take care of my daughter. If my mother was present here, many of my problems would have been reduced … I made an application but they refused. I applied twice and they refused. She couldn’t come here. (Female participant, Melbourne Workshop). Where supports were available, they did not always suit participants’ cultural background. One participant who made the difficult decision to accept a nursing home placement for her husband recounted her resulting estrangement from her sons and daughter, leaving her isolated with no social support. In summary, I let my husband [go] in a nursing home. Then my daughter fought with me and all my sons criticised me. I have three sons and one daughter, all of them became a group, they became a group against me. I am alone for four months now (Female participant, Online Workshop 1). Figure 4 represents this participant feeling alone and isolated without her family’s support. Gender. Female participants were especially vocal about their need for support from their extended family, and the data suggests that mothers of children (including adult offspring) with disability experienced the stress of being the only support for their family. I ended my married life, in this short period of time, my husband left me and left the girls, and I don't know what the reasons are. I mean, I have a lot of pressure. But he left us alone. Frankly, we needed him (Female participant, Melbourne Workshop). Service users’ ability to seek. There was a misalignment of the values upon which the Australian service system is based and the values of Syrian and Iraqi people from refugee backgrounds. This meant participants experienced lack of empathy and understanding, as well as poor quality services from service providers. I mean, we left our country and were displaced and lost all our homes, and we will find some negligent employees who do not [understand] your feelings (Male participant, Online Workshop 2). Dr. JB basically does not cooperate with us at all. I give him a form, for example, I say ‘I want you to fill this form in’. He is intolerant of me, and says that ‘you daily bring a form, and every day you do these things’. I mean, he does not cooperate with us at all (Male participant, Online Workshop 2). Where participants expected services that supported the whole family, they instead found that siblings without disabilities were not automatically supported. As a result, participants expressed concerns about the impact upon siblings of lifestyle restrictions such as staying home with the child with disability because there was no family support. My oldest girl is disabled, okay, the matter is finished. But this healthy child suffers from problems, and I begin to feel, with the passing of time, I see her seem to become nervous or depressed, even though she is a young girl of 10 years old (Female participant, Melbourne Workshop). It was apparent that families in this situation were not aware of mainstream youth or family support services that could provide support for siblings. Some participants were more empowered, however, in responding to poor or neglectful services for their family member with disability. I am not happy (with) too many support workers. I have changed (workers) because this support worker just stays on their mobile (phone) (Female participant, Melbourne Workshop). Figure 5 represents participants’ perception of the difficulties they face in accessing services. Dimension 3: Availability and accommodation. According to Levesque, Harris and Russell (7) availability and accommodation relates to geographic location, accommodation, opening hours, and appointment mechanisms. Geographic location. The issue of geographic location was most strongly felt by participants in relation to access to housing and transport. There were disadvantages to being allocated housing some distance from where participants knew other people or were accessing services. As for the housing, yes it's hard to reside in any place and you have to go for a long way that you aren't in the centre, to have a healthy home, difficulty with everything and it's hard to reach home services (Female participant, Online Workshop 5). It would be far from the area... far from doctors. To live in a distant area while having a disabled person at home, that’s really a problem (Male participant, Online Workshop 5). Participants struggled to accept the cost of health and disability transport services when traveling within Australian cities or between rural towns. I mean, if you want to drive over 30 kilometres, you will have to pay (Male participant, Melbourne Workshop). The company told me that every kilometre costs a dollar... I cancelled the company (Female participant, Melbourne Workshop). Accommodation/adjustments. Participants were unable to access care and support for themselves or family members with disability when adjustments and accommodations were not made to include the impact of the disability. Navigating the service system was difficult for participants with no access to support coordination and with no understanding of where accessible housing and accessible transport fits into the disability service system. We go to find a house. Most of the houses we see have small bathrooms. Especially since we have a disabled person at home (Male participant, Online Workshop 3). Traveling by train was difficult. It was too far between the platform and the train, so it was difficult to [get on board] (Female participant, Melbourne Workshop). Figure 6 represents the physical access barriers encountered by participants. Equally importantly, participants needed adjustments in the form of translations to allow them to read and understand information and to feel included equally with other people seeking disability support. We don’t speak English. They should provide an Arabic version [of the contract] so we can understand what this is before we sign it (Female participant, Online Workshop 4). Since I don’t know how to read or write, I may ask for a translation. I might be put on [hold] waiting until someone responds (Female participant, Online Workshop 4). Hours of opening, appointment mechanisms. The complexities of the NDIS service system, wherein service delivery is rationed within the budget allocated to the person with disability, led to perceptions of service unreliability. The psychiatrist who came to the house to see my son only comes 5 times a year… I say why do you not come for example, every month or less than a month to examine him? He told me that the NDIS did not pay [him to come more often] (Male participant, Online Workshop 2) One of the female employees who is the coordinator between me and this office came and said I will be responsible for you and I will try to help you by providing you services … But one of the problems we experienced was they call and say we will come to provide you with the service, but they disappear for a month or more, no message, no call, no service. (Female participant, Online Workshop 2). Service users’ ability to reach. Participants were constrained in their ability to reach health and disability services because their living environments were not sufficiently supported or accommodated by service providers. Common barriers included appointments that were infrequent or required long waiting periods; having to travel long distances, often on public transport that was difficult to navigate for people with disability; housing that was too small and inaccessible for people with disability. Dimension 4: Affordability. According to Levesque, Harris and Russell (7), affordability encompasses direct costs, indirect costs, and opportunity costs. Direct costs. People with disability and family members from refugee backgrounds who are reliant upon Australian income support payments found it difficult to meet costs such as medical gap fees, dental costs and housing, as well as incidental costs incurred in caring for a family member with disability. Honestly, when you have a disabled family member at home, you devote yourself to that person. You can't go out, you can't work. You want to devote yourself to that person. Your salary is … they give you A$200. What would you do? I think you would move (Male participant, Online Workshop 4) Participants found services that were excluded from NDIS and Medicare, such as some imaging and specialist medical and dental treatment, housing and utilities, were unexpected cost impositions. We have to go to specialist doctors. The specialist doctor has made x-rays that cost me A$200 and other x-rays which also cost me A$200 (Male Participant, Online Workshop 1). Dental services in government hospitals are very few, and if they ask for a small amount, they do not help us. The salaries are very limited and we have very many requirements (Female participant, Online Workshop 2). The family who has a disability … They do not have any assistance on the bills for electricity, gas, water, and so on (Female participant, Melbourne Workshop). Indirect costs. The constraints and exclusions imposed by NDIS funding were keenly felt, with participants questioning the inflexibility of NDIS funding. The combination of not knowing how to navigate the service system and facing high costs of services made it difficult for participants to trust service providers. But there are companies that take advantage of you when they see you for the first time (Female participant, Melbourne Workshop). For a car, just a taxi that drives me to the clinic and goes to finish other work and then comes back to take me home. Even if [this takes] an hour and a half they [consider it to be] three hours, [and] they take the full amount of A$300 (Female participant, Online Workshop 2). Financial pressures contributed to a sense of hopelessness for some participants. I cannot live with this limited salary (Male participant, Online Workshop 2). Figure 7 represents costs incurred by participants when supporting a person with disability. Opportunity costs. Lack of support coordination in areas of housing and employment meant participants were under financial pressure and felt insecure. I am applying for housing. It has been almost a year and a half. So far, I have not received any answer. I am threatened at home. I don’t know what I will do when they get me out of the house (Male participant, Online Workshop 2). Yes, finding a solution to the housing problem would really improve half of our psychological and financial stress (Female participant, Online Workshop 4). He told you.... go to the internet. Find a job online. You do not have a language; you do not have a knowledge of this country. Why are they asking you to search online for a job? (Female participant, Online Workshop 1). Service users’ ability to pay. People from refugee backgrounds supporting family members with disability, or living with disability themselves, were likely to be disadvantaged by the loss of any income, assets and social capital they may formerly have had in Iraq or Syria, and by their reliance on Australian social service payments. Some participants had been able to gain employment and a regular income, but most found it difficult to meet the costs of housing, medications, disability aids, utilities and other living expenses. Money runs out quickly because it's spent for example on physical therapy, moving around …etc. All of this costs and money runs out really quickly (Female participant, Online Workshop 5). You know all my salary is paid for the rent (Female participant, Online Workshop 5). Medicare does not pay for all of my medications (Female participant, Melbourne workshop). Participants longed for housing security: I cry daily because of it [ being forced to relocate housing] and when I moved to that house, I prayed to God that the owner won't come to tell me that it was sold and that I should get out of it (Female participant, Online Workshop 4). Dimension 5: Appropriateness. Appropriateness is defined by Levesque, Harris and Russell (7) as the technical and interpersonal quality, adequacy, coordination and continuation of health services. Technical and interpersonal service quality. Participants recounted many examples of inappropriate service responses, such as evasiveness and unresponsiveness when seeking help from NDIS or Medicare, which they interpreted as either a lack of skill or apathy on the part of employees. An employee in NDIS…we called him asking about a file. We gave him numbers, personal information and everything. He didn’t know how to enter the system. And then he [pretended] that he did not hear. He said, after 40 minutes, "I can't hear you," and closed the call (Male participant, Online Workshop 1). Unqualified. They have no idea. They were working in a bank, then come to work in the NDIS... How do you understand the needs that [are] written in the report presented by the doctor or by the provider if you have no background in this matter and you do not know how to appreciate its needs? (Male participant, Online Workshop 1). Even in Medicare, you come across people who are not qualified, who do not have the information. (Male participant, Online Workshop 1). Coordination and continuation of services. Participants identified similar skill deficits and lack of coordination in health services and disability support services. I am sick with [pain in my] joints. I went for a medical check with three or four doctors, and each of them transferred me from one hospital to another and they did not accept my case (Female participant, Melbourne Workshop). However, not all participants experienced obstacles in engagement in health services If you go to the hospital, you will be helped a lot there. If you have a problem, they will transfer you to the right place (Male participant, Melbourne Workshop). They stood by me and felt all my suffering and seriously I was exceptionally supported. Even my mental state got better as I felt they were sympathetic to me (Female participant, Online Workshop 4). Service users’ ability to engage. Participants struggled with agency and autonomy in determining whether or not a service provider was trustworthy and acceptable. I said don't come to me … She said sure I will come. She helps me for two hours... I said no... until she knocked on the door. I said I don't want this service. Did you not tell the senior officials? She said, they must go to you (Female participant, Melbourne Workshop). One participant’s comments signalled emerging empowerment: It takes me time, but I'm the type of person who if want to do something I don't back down from [it], even if it takes me time to do it (Female participant, Online Workshop 2). Discussion As demonstrated by other published studies ( 8 ), the Levesque, Harris and Russell ( 7 ) framework can be an effective tool for identifying systemic barriers to accessing health services and also for assessing service users’ perceptions of access. By applying the Levesque framework to data on the experiences of people with disability and family members from Syrian and Iraqi refugee backgrounds, we found an emphasis on access appropriateness, affordability, and availability and accommodation, although approachability and acceptability were also of concern. Access barriers to healthcare and disability care were broadly similar to those identified in previous studies on people from refugee backgrounds seeking healthcare ( 12 ) and families of people with disability from refugee backgrounds seeking care (Authors’ Own, 2023;( 20 ). Our study, unlike the majority of studies reviewed by Cu et al.( 8 ), included analysis not only of the dimensions of access from the systems perspective but importantly from the perspective of service users. We applied the Levesque, Harris and Russell framework as a deductive lens to understand the impacts of access barriers and the factors that prevent people with disability and family members from refugee backgrounds from perceiving, seeking, reaching, affording and engaging with the service system. This perspective, absent in the analysis by Cu et al.( 8 ), made it possible to understand personal impacts on service users of systemic access barriers. For instance, when participants viewed disability as impacting the entire family, rather than solely the person with disability (as framed by the NDIS), their expectations of support were unmet. Infrequent appointments, long waits for appointments and long waiting times in waiting rooms signalled unreliability, and challenges to participant agency and autonomy were interpreted as untrustworthiness. Through this data, access to healthcare can be seen to be a dynamic process, as argued by Cu et al. ( 8 ), influenced, for instance, by the ready availability of translated and culturally appropriate healthcare information that can support health literacy of people from refugee backgrounds and therefore empower them as service users. In terms used by Levesque, Harris and Russell ( 7 ) participants’ abilities to seek and access care were challenged by their lack of knowledge about care options (Ability to Perceive); their uncertainty about their rights when navigating a service system that was difficult to comprehend (Ability to Engage), and they found it difficult to exercise autonomy or choice, to find cultural supports such as extended family to help with disability care, and to gain facility with language (Ability to Seek). However, what the Levesque, Harris and Russell ( 7 ) framework does not include is how emotion interacts with access, which for a group of people who have experienced displacement and ongoing trauma, is essential to consider. Service barriers described by people from refugee backgrounds typify a failure of health and disability service systems and individuals within them to understand the cultural and emotional factors that influence people from refugee backgrounds’ ability to perceive, seek and engage with care providers (e.g., the general practitioner who refused to sign a form; the aged care assessment team that recommended placement into aged care without exploring the cultural consequences). Health and disability service systems for people with disability and family members from refugee backgrounds such as the NDIS, Settlement Support Services, Medicare and Centrelink would be more effective pathways (and not barriers) to care if their responses to people with disability and family members from refugee backgrounds were incorporated into health promotion strategies, properly translated and targeted to newly arrived and more established refugee communities, and within a framework of social determinants of health. Such promotional material should apply strengths-based communication using language and images suitable for different cultures (in this case Syrian and Iraqi). It is incumbent upon health and disability care practitioners to better understand the personal resettlement challenges faced by people from refugee backgrounds, especially for those who need to navigate both health and disability service providers with differing perspectives on choice and control. Demands made upon people from refugee backgrounds from disability and health service system responses, such as onerous travel to appointments and insecure accommodation, add emotional demands and further access burdens to the economic and social inequities they experience. Limitations This study was conducted mainly online due to COVID19 restrictions. Apart from one workshop conducted in person, the majority of participants required access to and familiarity with technology. The co-researcher, author two, provided people with significant technical support to enable them to be part of the online workshops but for some people this was a barrier that prevented them from participating. For logistical reasons and due to time and budget constraints, the workshops were conducted in Arabic. This meant some people from minority language groups were not able to participate. Conclusions People with disability from refugee backgrounds are at the intersection of health, disability and refugee services and systems with, at least initially, little understanding of their rights in Australia. Levesque, Harris and Russell’s ( 7 ) conceptual framework highlights the supply and demand factors at work in the service system and assists delineation of barriers and facilitators of service access, but places little emphasis on the emotional impacts of such barriers. Some practical barriers can be resolved within service systems, such as health promotion strategies using appropriate languages and cultural concepts, training of health and disability support practitioners to respond in culturally appropriate ways, and ensuring all stakeholders respect the rights of people from refugee backgrounds with disabilities. Other, more complex barriers require improvements in service coordination and cultural brokerage beyond the health and disability service systems in recognition of the holistic needs of people with disability and family members from refugee backgrounds. Declarations Ethics approval and consent to participate The study was conducted in accordance with the Declaration of Helsinki and approved by the Deakin University Human Research Ethics Committee (2021 − 301). All study participants gave written informed consent to participate in the study. Consent for publication Not applicable Competing interests The authors declare no competing interests Author details 1 Disability and Inclusion, School of Health and Social Development and Institute for Health Transformation, Deakin University, 221 Burwood Highway, Burwood 3125, Victoria, Australia 2 Social Work, School of Health and Social Development and Institute for Health Transformation, Deakin University, 1 Gheringhap St, Geelong 3220, Victoria, Australia 3 School of Social Sciences, UNSW Sydney, Australia Funding This research was completed with the assistance of a grant from the Australian National Disability Research Partnership in 2021. Author Contribution Authors contributed equally to the work. Acknowledgement Figures 2-7 were created by Nasan Esber. Data availability N/A References Refugee Council of Australia. Key Points on Australia's Humanitarian Program 2024-25 Discussion Paper Surry Hills, NSW 2024. Australian Department of Home Affairs. 2024–2025 Humanitarian Program Discussion Paper In: Affairs H, editor. Canberra, ACT 2024. Duell-Piening P. Refugee resettlement and the Convention on the Rights of Persons with Disabilities. Disabil Soc. 2018;33(5):661–84. Dew A, Lenette C, Wells R, Higgins M, McMahon T, Coello M, et al. In the beginning it was difficult but things got easier’: Service use experiences of family members of people with disability from Iraqi and Syrian refugee backgrounds. J Policy Pract Intellect Disabil. 2023;20(1):33–44. Carpenter TG. Tangled web: The Syrian civil war and its implications. Mediterranean Q. 2013;24(1):1–11. Dowse L, Dillon-Savage I, Dew A, Strnadová I. Integrated responses for people with cognitive disability and complex support needs: Factors and principles. Evid Base: J Evid reviews key policy areas. 2020;2:10–61. Levesque J-F, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health. 2013;12:1–9. Cu A, Meister S, Lefebvre B, Ridde V. Assessing healthcare access using the Levesque’s conceptual framework–a scoping review. Int J Equity Health. 2021;20(1):116. Shrestha-Ranjit J, Payne D, Koziol-McLain J, Crezee I, Manias E. Availability, accessibility, acceptability, and quality of interpreting services to refugee women in New Zealand. Qual Health Res. 2020;30(11):1697–709. Shaw J, Abejirinde I-OO, Agarwal P, Shahid S, Martin D. Digital health and equitable access to care. PLOS Digit health. 2024;3(9):e0000573. Robinson S, Frawley P, Dyson S. Access and accessibility in domestic and family violence services for women with disabilities: Widening the lens. Violence Against Women. 2021;27(6–7):918–36. Parajuli J, Horey D. Barriers to and facilitators of health services utilisation by refugees in resettlement countries: an overview of systematic reviews. Aust Health Rev. 2019;44(1):132–42. Bellamy K, Ostini R, Martini N, Kairuz T. Access to medication and pharmacy services for resettled refugees: a systematic review. Aust J Prim Health. 2015;21(3):273–8. Taylor J, Haintz GL. Influence of the social determinants of health on access to healthcare services among refugees in Australia. Aust J Prim Health. 2018;24(1):14–28. Colucci E, Szwarc J, Minas H, Paxton G, Guerra C. The utilisation of mental health services by children and young people from a refugee background: a systematic literature review. Int J Cult Mental Health. 2014;7(1):86–108. Hadgkiss EJ, Renzaho AM. The physical health status, service utilisation and barriers to accessing care for asylum seekers residing in the community: a systematic review of the literature. Aust Health Rev. 2014;38(2):142–59. Robertshaw L, Dhesi S, Jones LL. Challenges and facilitators for health professionals providing primary healthcare for refugees and asylum seekers in high-income countries: a systematic review and thematic synthesis of qualitative research. BMJ Open. 2017;7(8):e015981. Hoffman SJ, Robertson CL. A systematic review of Karen refugee health. Int J Migration Health Social Care. 2016;12(1):1–15. Pace M, Al-Obaydi S, Nourian MM, Kamimura A. Health services for refugees in the United States: Policies and recommendations. Health. 2015;5(8):63–8. Rfat M, Zeng Y, Yang Y, Adhikari K, Zhu Y. A Scoping Review of Needs and Barriers to Achieving A Livable Life among Refugees with Disabilities: Implications for Future Research, Practice, and Policy. J Evid Based Soc Work. 2023;20(3):373–403. Friedman C. Disparities in Social Determinants of Health Amongst People with Disabilities. Int J Disabil Dev Educ. 2024;71(1):101–17. Peprah P, Lloyd J, Ajang DA, Harris MF. A qualitative study of negative sociocultural experiences of accessing primary health care services among Africans from refugee backgrounds in Australia: implications for organisational health literacy. BMC Prim Care. 2024;25(1):327. Kaur M, Bridi L, Kaki D, Albahsahli B, Bencheikh N, Saadi A, et al. Funding for refugee Health Research from the National Institutes of Health between 2000 and 2020. JAMA Netw Open. 2024;7(1):e2350837–e. Yeshitila YG, Gold L, Riggs E, Abimanyi-Ochom J, Sweet L, Le HND. Trends and disparities in perinatal health outcomes among women from refugee backgrounds in Victoria, Australia: A population-based study. Midwifery. 2024;132:103980. Robinson S, Fisher KR. Research Handbook on Disability Policy. Cheltenham, UNITED KINGDOM: Edward Elgar Publishing Limited; 2023. Dew A, Murad M, Smith L, Watson J, Robinson K. Online Bilingual Co-Design: Developing Resources with People with Disability and Family Members from Refugee Backgrounds. Qualitative Rep. 2024;29(2). Corresponding author. Angela Dew: [email protected] . Additional Declarations No competing interests reported. Supplementary Files Supplementaryfile.pdf Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 24 Sep, 2025 Reviews received at journal 24 Sep, 2025 Reviews received at journal 17 Sep, 2025 Reviewers agreed at journal 16 Sep, 2025 Reviewers agreed at journal 16 Sep, 2025 Reviewers agreed at journal 11 Sep, 2025 Reviewers agreed at journal 07 Sep, 2025 Reviewers agreed at journal 04 Sep, 2025 Reviewers invited by journal 04 Sep, 2025 Editor assigned by journal 03 Sep, 2025 Editor invited by journal 13 Aug, 2025 Submission checks completed at journal 12 Aug, 2025 First submitted to journal 12 Aug, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7172241","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":512728191,"identity":"158414a4-24cf-471d-b30d-a5da4dd00da0","order_by":0,"name":"Angela Dew","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABFElEQVRIie3RsUrEMBjA8e8IxCVwayBWXyFSUIqir5JQaJfc5HLggYWDc9G7taIPIQiunhR6i4tboILtcpNDXcoNclzazSEebg75TyHJjyQEwOX6r5UAvQTQnAII0k7QrUR0BIs/E8JpN9xG+ndXb6UYgTej6kvXo2j3CNBLQeBUJhZC31/PucjBv00Hj0GaKxIkODwmEFoJaBVRgUE+FIMnRvCQ8Dk5ZASQlexrFa/EGuRzoZbse92SfmPIpZVwHecgJ+YUpjDrTVR7CjYks5IDrRCVU+qnH0s/uJlGhGfYD+75wreRPR1Xdd2ceLPrrNKrJjzji3GlP4cXnvX55jvg50eg7sLW/aad8rdVl8vlcgFsAJNKWISAE3MdAAAAAElFTkSuQmCC","orcid":"","institution":"Deakin University","correspondingAuthor":true,"prefix":"","firstName":"Angela","middleName":"","lastName":"Dew","suffix":""},{"id":512728193,"identity":"127fdae4-2974-403f-92f2-2df421321a2f","order_by":1,"name":"Mahmoud Murad","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"Mahmoud","middleName":"","lastName":"Murad","suffix":""},{"id":512728194,"identity":"0b716383-91c2-439b-a130-3b95b17e0c56","order_by":2,"name":"Susan Taylor","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"Susan","middleName":"","lastName":"Taylor","suffix":""},{"id":512728195,"identity":"c7483418-c388-4957-aa03-1ca0e0374299","order_by":3,"name":"Joanne Watson","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"Joanne","middleName":"","lastName":"Watson","suffix":""},{"id":512728196,"identity":"da83ebe0-e7ac-4acc-b62e-53087f29eafd","order_by":4,"name":"Louisa Smith","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"Louisa","middleName":"","lastName":"Smith","suffix":""},{"id":512728197,"identity":"d730ec8b-201f-4e5d-9476-4a751ab64dc9","order_by":5,"name":"Kim Robinson","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"Kim","middleName":"","lastName":"Robinson","suffix":""},{"id":512728198,"identity":"63353088-9bf8-4e76-aeab-2cddfcf13f46","order_by":6,"name":"Maree Higgins","email":"","orcid":"","institution":"UNSW Sydney","correspondingAuthor":false,"prefix":"","firstName":"Maree","middleName":"","lastName":"Higgins","suffix":""}],"badges":[],"createdAt":"2025-07-21 01:38:16","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7172241/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7172241/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":91188664,"identity":"b0d35e45-3862-4268-b278-228c9890ee33","added_by":"auto","created_at":"2025-09-12 14:24:25","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":513599,"visible":true,"origin":"","legend":"\u003cp\u003eLevesque Framework\u003c/p\u003e","description":"","filename":"Figure11.jpg","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/be84d8e6303d2953774dd31d.jpg"},{"id":91188628,"identity":"8ee9d7b5-2d6f-4771-a625-ced60cc4cae6","added_by":"auto","created_at":"2025-09-12 14:24:23","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":218982,"visible":true,"origin":"","legend":"\u003cp\u003eNavigating the NDIS\u003c/p\u003e","description":"","filename":"Figure12.jpg","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/f984648e351ab20678959094.jpg"},{"id":91188655,"identity":"c4b3c677-231a-43d9-8df2-21b451ce97c4","added_by":"auto","created_at":"2025-09-12 14:24:24","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":236800,"visible":true,"origin":"","legend":"\u003cp\u003eFeeling Confused and Unsupported\u003c/p\u003e","description":"","filename":"Figure13.jpg","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/71866df2ced3d0966c68204e.jpg"},{"id":91188624,"identity":"e5665081-becc-499c-858b-8a3a51a67f4d","added_by":"auto","created_at":"2025-09-12 14:24:23","extension":"jpg","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":246259,"visible":true,"origin":"","legend":"\u003cp\u003eFeeling Alone and Isolated\u003c/p\u003e","description":"","filename":"Figure14.jpg","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/8801445256d2c953b8278ea4.jpg"},{"id":91188645,"identity":"f05c3665-c003-47d8-aedd-561cdf23b469","added_by":"auto","created_at":"2025-09-12 14:24:23","extension":"jpg","order_by":5,"title":"Figure 5","display":"","copyAsset":false,"role":"figure","size":181221,"visible":true,"origin":"","legend":"\u003cp\u003eFeeling Like Accessing Services in Australia\u003c/p\u003e","description":"","filename":"Figure15.jpg","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/4d2192fb8342ccbfc2c2449c.jpg"},{"id":91189713,"identity":"a40529de-c9e6-43d3-844b-3948e339f37b","added_by":"auto","created_at":"2025-09-12 14:32:26","extension":"jpg","order_by":6,"title":"Figure 6","display":"","copyAsset":false,"role":"figure","size":157934,"visible":true,"origin":"","legend":"\u003cp\u003ePhysical Access Barriers\u003c/p\u003e","description":"","filename":"Figure16.jpg","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/530191c0e40e45c8569c6f6d.jpg"},{"id":91188647,"identity":"01f7456d-ae85-4130-a5f0-7a32a3eefaa4","added_by":"auto","created_at":"2025-09-12 14:24:23","extension":"jpg","order_by":7,"title":"Figure 7","display":"","copyAsset":false,"role":"figure","size":154863,"visible":true,"origin":"","legend":"\u003cp\u003eCosts Incurred in Supporting Person with Disability\u003c/p\u003e","description":"","filename":"Figure17.jpg","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/f276fb34b51cb67d7cdad3b9.jpg"},{"id":91191890,"identity":"bb28bef2-5253-42ad-aafe-f436a67962aa","added_by":"auto","created_at":"2025-09-12 14:40:29","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":2552135,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/48f54b1d-8a3c-4cfa-8832-7324a5f4c210.pdf"},{"id":91188626,"identity":"540e529e-257d-4db4-b3b9-afa594bb3a7d","added_by":"auto","created_at":"2025-09-12 14:24:23","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":126322,"visible":true,"origin":"","legend":"","description":"","filename":"Supplementaryfile.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7172241/v1/fa26471bef1a2047be01accb.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Disability Service Access Barriers for Refugees ","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThe number of people seeking asylum globally has increased in recent years, with the United Nations High Commission for Refugees (UNHCR) identifying 2.4\u0026nbsp;million people in need of urgent resettlement in 2024, and this number is expected to further increase (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Since 2017, people applying for refugee status from Iraq and Syria consistently received priority under the Australian Humanitarian Program (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). At the same time greater emphasis has been placed globally, including in Australia, on the rights of refugees with disability (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). The health waiver introduced by the Australian Government in 2012 meant that people applying for permanent protection visas no longer had the potential cost of supporting their ongoing treatment and support assessed as part of their application (Australian Government, 2012). This removed one barrier to people with disability being granted protection visas, contributing to an increase in prevalence and diversity among those accepted into Australia as refugees (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAll migrants require some level of assistance to understand the new systems they must navigate to access the services and support they need in their new country. People from Syrian and Iraqi refugee backgrounds fled totalitarian regimes where their country\u0026rsquo;s infrastructure was disrupted and fragmented due to years of corruption and civil unrest (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Resettling in a new country such as Australia where there are national and state-based systems for delivering health, disability, education, transport and other services requires a fundamental change in thinking and approach.\u003c/p\u003e\u003cp\u003eAustralian health, settlement and disability support services are diverse and operate within siloes at different government levels. The Australian health system is federally funded. People with refugee status have access to free or low-cost health and medical services through Medicare. Most health services, including specialist refugee health services, are administered at State/Territory level, providing hospital and community-level health care. The Federally-funded Humanitarian Settlement Program delivers services that respond to needs related to social determinants of health, through non-government service providers. The National Disability Insurance Scheme [NDIS] provides individual funding to those assessed as living with permanent and significant disability, for reasonable and necessary support from non-government and private providers, to meet goals for participation and inclusion in society. Centrelink is the central agency that provides social security payments and services to Australian citizens and specified visa holders. These systems are complex and not always well coordinated or connected, meaning access is complicated (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe current study builds on evidence from prior research that people from refugee backgrounds with disability face challenges in gaining access to disability and healthcare supports and community services (author details withheld for blind review). In the current study the authors frame the experiences of people with disability from refugee backgrounds who have resettled in Australia within the Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) conceptual framework of healthcare access. The framework uses five determinants of either facilitators or obstacles to accessing healthcare and considers the impact upon individuals of \u0026lsquo;the social, cultural, economic or physical factors acting at macro and micro levels\u0026rsquo; (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Levesque and colleagues proposed that access to health services is the nexus where multiple supply and demand factors come together as enablers in contacting and obtaining healthcare. As shown in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e, access is defined by Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) as the opportunity to identify, seek, reach obtain or use healthcare; to reach, obtain or use healthcare services; and to fulfil healthcare needs.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eFigure \u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e depicts the Levesque, Harris and Russell Framework on Patient-Centred Care\u003c/p\u003e\u003cp\u003eLevesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) further argue that approachability, acceptability, availability and accommodation, affordability and appropriateness are determinants of access to healthcare. These dimensions of accessibility correspond with and interact with five dimensions of people\u0026rsquo;s abilities to use the health service system: ability to perceive, ability to seek, ability to reach, ability to pay, and ability to engage, thus producing a dynamic framework presenting access as an interactional process (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). This process incorporates health systems and health service providers along with individual health service users, communities and populations. The framework identifies how perceptions, healthcare behaviour, the use of healthcare services, and the systemic consequences of people\u0026rsquo;s healthcare decisions impact on healthcare access by examining the interaction between the dimensions of service accessibility and the dimensions of service user abilities to use health services.\u003c/p\u003e\u003cp\u003eWhen applied to published studies into healthcare access, the Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) framework highlights the interactions between the barriers and enablers attributable to both service providers and service users. For instance, a study by Shrestha-Ranjit, Payne (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) identified poor provision of interpreting services and lack of service preparation in primary healthcare practices for Bhutanese women from a refugee background in New Zealand. However, the study did not consider broader dimensions included in the Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) framework such as service appropriateness or the ability of Bhutanese women from a refugee background to seek, reach or engage with services. Some critics point to ambiguities across the dimensions of access in the Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) framework, possibly contributing to skewed findings on healthcare access (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). For instance, a barrier to service approachability such as attitudes and behaviour of healthcare staff may in some instances be interpreted also as a barrier to acceptability (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). However, researchers into access to digital healthcare (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e) and other service systems such as family violence services (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), have demonstrated that Levesque, Harris and Russell\u0026rsquo;s (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) framework can provide guidance on aligning health and other service systems with the needs of service users.\u003c/p\u003e\u003cp\u003eAn overview of studies on how people from refugee backgrounds use health systems (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) found barriers included practice issues such as communication and inconsistent engagement of interpreters, lack of service collaboration, and service knowledge deficits such as lack of cultural competency. Almost all their reviewed studies (8/9) reported language difficulties as a barrier to health service utilisation for people from refugee backgrounds. Two of the studies reviewed by Prajuli and Horey reported the barrier of low health literacy (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) and another identified a lack of confidence in seeking healthcare (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Other barriers to people from refugee backgrounds accessing healthcare included the influence of family and peers (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e), low levels of trust in the health system (\u003cspan additionalcitationids=\"CR15 CR16\" citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) and a sense of powerlessness (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). Beyond initial resettlement, barriers to ongoing access to healthcare can perpetuate health disparities for people from refugee backgrounds (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eA scoping review by Rfat et al in 2023 identified 34 international publications from 2000\u0026ndash;2022 related to service access barriers for people with disability from refugee backgrounds (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Based on these studies, Rfat and colleagues identified the need for a broad range of service system changes such as inclusive or special education for children and young people; accessible, affordable and culturally informed healthcare; vocational training and employment opportunities; social benefits and access to the welfare system and advocacy; and social acceptance and inclusion with mainstream society. Whilst health and medical needs are an important factor for people with disability and their families from refugee backgrounds, these findings point to the many other social, economic and environmental factors that contribute to equity in the health status of any population (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAn Australian qualitative study conducted by (Authors Own, 2023) with eleven family members of people with disability from Syrian and Iraqi refugee backgrounds identified the broad scope of service access needs. In this study, the authors emphasised the critical advocacy and coordination role of refugee support services in facilitating both early access to medical and health care for humanitarian entrants, and in navigating ongoing access by people from refugee backgrounds to the disability service system in the absence of engagement by disability services. Reflecting on the global absence of advocacy and service coordination for people with disability from refugee backgrounds, Rfat, Zeng (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) also emphasised the vulnerability that comes with the intersection of refugee status and disability, and called for \u0026ldquo;cultural brokers\u0026rdquo; (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) to bridge, link or mediate between groups or persons and improve equity and cultural competency.\u003c/p\u003e\u003cp\u003eIn Australia and elsewhere, people with disability experience poorer health outcomes and higher levels of disadvantage than non-disabled people (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e), as do people with disability from refugee backgrounds (\u003cspan additionalcitationids=\"CR23\" citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Researchers have argued that the intersection of refugee status and disability places policymakers and practitioners in Australia and globally at the nexus of human and disability rights discourse (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn this paper, we apply the Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) access framework to families from refugee backgrounds with disabilities from Syria and Iraq, broadening the definition of healthcare to incorporate disability support and other social determinants of health.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eResearchers took a participatory action and co-research approach to the study, engaging with people with lived experience of disability and refugee status and those who supported them. The study received ethics approval from the Deakin University Human Research Ethics Committee (2021\u0026thinsp;\u0026minus;\u0026thinsp;301) and all participants provided written or verbal consent. The co-researcher/Project Manager was an Arabic speaking man with a disability from a Syrian refugee background. The project team included eight academics from two universities in New South Wales and Victoria (Australia), the project manager, and representatives from seven partner organisations (names removed for blind review).\u003c/p\u003e\u003cp\u003eIn Stage 1 of the research, the project team developed a one-page plain language summary of the service access issues raised in the refugee literature aligned with Levesque\u0026rsquo;s (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) service access dimensions. The plain language summary of service access issues, previously published separately (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e) was translated into Arabic. In Stage 2, participant recruitment took place through partner organisations and through the co-researchers\u0026rsquo; networks, using flyers and participant consent forms translated into Arabic. The service access summary (see Supplementary File) was sent to Stage 2 participants ahead of the workshops to help them to prepare their thoughts prior to the workshops. Five workshops were held, four online and one face to face in Melbourne, with a total of 38 people aged over 18 from Syrian and Iraqi refugee backgrounds with disability and family members living in NSW and Victoria. Participants were aged 31\u0026ndash;40 years (55%), 41\u0026ndash;50 (13%), and 51\u0026ndash;60 (32%).\u003c/p\u003e\u003cp\u003eThe workshops were facilitated by the Arabic-speaking co-researcher. One non-Arabic speaking member of the research team attended each workshop. Workshop discussions were informed by the service access summary allowing participants to freely express related priority concerns drawn from their own lived experience. Discussions were audio-recorded, transcribed and translated into English language by an accredited professional translation company. Additionally, an artist with lived experience of disability from a Syrian refugee background attended as a visual documenter (see illustrations in Results).\u003c/p\u003e\u003cp\u003eResearchers imported the English language translations into NVivo12 and deductively coded this data in alignment with Levesque, Harris and Russell\u0026rsquo;s (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) five dimensions of access: approachability, acceptability, availability and accommodation, affordability and appropriateness. The data was interpreted by reference to the service access dimensions and the concepts associated with each dimension, as well as to the dimensions of service user abilities and associated concepts as described by Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn Stage 3 of the project a co-design approach was used to design resources to improve access to community services and supports for people from Syrian and Iraqi refugee backgrounds and to better target resources to their needs (author details withheld for blind review). A co-design process developed six short, animated Arabic-language videos accessible via social media channels regularly used by Iraqi and Syrian communities [video link withheld for blind review]. Information about oral hygiene and regular dental care for people with disability was also prepared in postcard format. Resources were disseminated through partner organisations, places of worship, community centres, dentists, and general practitioner clinics. The project team and resources were awarded the inaugural New South Wales Multicultural Health Communication Refugee Resources Award 2023. The videos have since been translated into five other languages used by people from refugee backgrounds living in Australia. This paper focuses on the Stage 2 workshop findings related to service access as described by Levesque, Harris and Russell (2013).\u003c/p\u003e"},{"header":"Findings","content":"\u003cdiv id=\"Sec3\"\u003e\n \u003cp\u003eThe coded workshop data aligned well with the dimensions in the Levesque, Harris and Russell (7) framework. The dimensions of acceptability, approachability and appropriateness were the most well-populated in the data. Key service types with which participants were concerned were health, disability, housing and refugee services. Results are structured by breaking down each dimension into its components and considering both sides of the framework \u0026ndash; firstly the service system and secondly the service user perspective.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eDimension 1: Approachability.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eAccording to the Levesque, Harris and Russell\u0026rsquo;s (7) framework, approachability relates to service transparency, outreach, information, and screening.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eTransparency.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eParticipants were confronted by an opaque and seemingly arbitrary separation between Australian disability and health systems, which many did not understand.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eWhat is the labyrinth that they make between the services, that sometimes they told you that it is the disability, all of a sudden they tell you it is a health\u0026hellip; service\u0026hellip;\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eEven within one service system such as the disability sector, participants were confused about the differences between the funding entity - the NDIS, and the disability providers from which they could purchase supports and services. They also reported that providers were not equipped or interested in providing services to people from refugee backgrounds highlighting a lack of understanding and preparedness within the sector.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI thank the Australian government for the services it provides to us, but there are many gaps. Unfortunately, for example, the companies that the NDIS deals with, they never deal with us, and they do not provide us with services which [are] in the plan of the NDIS\u003c/em\u003e (Male participant, Online workshop 2).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eFigure 2 illustrates the confusion and maze of bureaucratic processes experienced by people with disability in attempting to access the NDIS.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eOutreach.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eCommon to many participants was the necessity of doing all the work themselves to find out how to access disability or health services, with the exception of settlement support services and some NDIS services.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eNo, frankly, I did not register, no one told me to register [for] government housing\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThe people here are not helpful. They do not direct others to go to certain people or places\u003c/em\u003e (Male participant, Online Workshop 3).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eIt was common for participants to find themselves on long waiting lists for services that were difficult to find and which they urgently needed. For instance, housing:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eWe have just come to this place\u003c/em\u003e [Australian city] \u003cem\u003eand we do not know these matters\u003c/em\u003e [how to apply for public housing] \u003cem\u003enor how to get help regarding this matter and we are not directed to go to someone or some organisation for services\u003c/em\u003e (Female participant, Online workshop 4).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eEverything was difficult, as you need to know so much information, and where to start from if you want to submit and what\u0026rsquo;s the right thing to do. [You need] someone to guide you to the way, where to start it from and how to reach what you want.\u003c/em\u003e (Female participant, Online workshop 5).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eHowever, as mentioned above, there was some evidence of effective outreach practice from settlement support organisations and NDIS service providers:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eThey\u003c/em\u003e [settlement support organisation] \u003cem\u003ewent to the\u003c/em\u003e [refugee health service] \u003cem\u003eand talked with them, the\u003c/em\u003e [refugee health service] \u003cem\u003emade reports and came to the house and checked\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThey\u003c/em\u003e [the settlement support organisation] \u003cem\u003etell you from the very beginning that we have started with the services and we are going to help you with such and such, and they would ask you about what\u003c/em\u003e [is lacking for] \u003cem\u003eyou and so you can tell. Out of my experience and what happened with me, they came with me and did it once more and asked me about what\u003c/em\u003e [is lacking for] \u003cem\u003eme, what we haven\u0026apos;t completed yet, and what\u003c/em\u003e [do I] \u003cem\u003eneed. So it was them who started the initiative\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eInformation.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eParticipants were not systematically informed about who to approach for health or disability services and support. Rather, they found the information in a piecemeal fashion.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eWhen we arrived, it was vague information that we heard from people, but we didn\u0026apos;t hear it from the family doctor. You are disabled; you are supposed to be registered with NDIS. I mean, it has been four years\u003c/em\u003e [since our arrival but only] \u003cem\u003enow, I applied to NDIS\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThere are a lot of things which they should even explain or let you understand them in detail. I feel like my eyes were closed; I didn\u0026rsquo;t know anything at all. When I started figuring things out, I said \u0026ldquo;where have I been?\u0026rdquo;, and there are still other things that we don\u0026rsquo;t know about\u003c/em\u003e (Female participant, Online Workshop 5).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eFigure 3 illustrates workshop participants\u0026rsquo; feelings of confusion and not being supported to access services.\u003c/p\u003e\n \u003cp\u003eFor these reasons, some participants said they made a point of passing on information to other people from refugee backgrounds who did not know about the disability support system.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eIf I see a person who needs\u003c/em\u003e [disability support] \u003cem\u003eI give him the number and tell him to register with the NDIS\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eTranslated information was critical in enabling participants to understand how to access services:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eProviding Arabic language resources is very important, I mean, when they also provide Arab service providers with a guide, it means that it is easy for you to reach\u003c/em\u003e [services] (Male participant, Online Workshop 1).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eI told you from the very beginning that it\u0026apos;s a language issue. Any paper which you sign\u0026hellip;when they bring you a contract with countless papers, how would you know its content? There has to be someone that helps you on that, they see what papers we are signing\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eScreening.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eParticipants recounted being refused services at the first point of screening, but with little or no support with next steps:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eMy wife is psychologically upset and she is following up her condition with the doctors. When I submitted the request [to the NDIS], it was rejected right away. They said she didn\u0026rsquo;t meet all the requirements. We have to go to specialist doctors\u003c/em\u003e (Male participant, Online workshop 1).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eCentrelink does not accept that I have a disability and I am a disability patient\u003c/em\u003e (Male participant, Online workshop 2).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eI am sick with joint\u003c/em\u003e [pain]. \u003cem\u003eI went for a medical check with three or four doctors, and each of them transferred me from one hospital to another and they did not accept my case\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eIf they were able to get past this first barrier, participants reported experiencing delays in accessing screening processes:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eFor us who are disabled, those with special needs, when we go to the hospital to check up some health problems, we are given long [wait time for] appointments. We cannot wait for these appointments\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eFirst thing, the specialist occupational therapy had a waiting list. It takes time. I waited for a whole year for them to send me to specialist therapy\u003c/em\u003e [which lasted] \u003cem\u003efor 6 months\u003c/em\u003e (Female participant, Online Workshop 2).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eSeveral months ago, I did the tests on the basis of which they wanted to create a care program for me. They did tests on the basis of disease. I waited for the tests for six years\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eService users\u0026rsquo; ability to perceive.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eAs well as the accessibility of service systems and service providers, Levesque, Harris and Russell (7) suggest that service accessibility is enhanced or limited by the ability of service users to perceive their own healthcare needs, and by their health literacy, health beliefs, trust and expectations (see Fig.\u0026nbsp;1). In this study, cultural values from the country of origin of people from refugee backgrounds influenced their health literacy and ability to perceive their own needs. The concept of disability was challenging for some participants:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI do not know. When they sat with me, I said this is a defect. And when they came to me, I told them this is a defect. We do not have this thing in Iraq\u003c/em\u003e (Female participant [whose husband suffered a stroke], Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eLack of trust in the Australian health system was evident in one participant\u0026rsquo;s expressed intention to leave Australia to access health care overseas because of poor family health outcomes:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eThis is my only solution. Frankly, I lost the girl\u0026apos;s\u003c/em\u003e [participant\u0026rsquo;s daughter\u0026rsquo;s] \u003cem\u003eeye. The second girl\u0026apos;s teeth were lost. I am communicating with them in Istanbul. I want to go there\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eSome participants\u0026rsquo; lack of trust in the health and disability care system was because they felt pressured to do things that did not feel right, like making decisions or signing documents without enough information, or because they did not perceive Australian healthcare to be of a high standard.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eHe\u003c/em\u003e [a housing tenancy manager] \u003cem\u003emade me sign in a paper without knowing about it\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eIn fact, health services are among the most important services that any person needs. What I mean is that health services are generally not of the required standard\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eParticipants understood their responsibilities to increase their knowledge and awareness of health and disability systems:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eWe have to be aware and know what\u0026rsquo;s going on so I respect them and they respect me, and I trust them and they trust me. One needs to know but I admit to you that I\u0026apos;m completely unaware about\u003c/em\u003e [many things]. (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eHowever, participants who had received considerate and respectful approaches by service providers reported that this enhanced their trust in the health and disability service systems:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eThey\u003c/em\u003e [service providers] \u003cem\u003eunbelievably take these things into account, they also respect people so much and others\u0026apos; cultures which means they respect cultures of people who they don\u0026apos;t accept so much. They didn\u0026rsquo;t change their treatment to me. I once was at an Australian doctor for physical therapy and he asked me if I accept that he touches my body. So imagine how much they take that into account, I was surprised. So there\u0026apos;s respect and cultural understanding in terms of our customs, traditions, and religions. There\u0026apos;s no problem with that.\u003c/em\u003e (Female participant, Online Workshop 5).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eDimension 2: Acceptability.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eAcceptability is defined by Levesque, Harris and Russell (7) as the fit between service providers and users in terms of values, norms, culture, and gender.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eValues, norms and culture.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003ePrior to becoming refugees, participants spoke about their experiences in Iraq and Syria in terms of ongoing war and upheaval, and powerlessness.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eWe did not have rights there, I worked for 18 years in Iraq, I went empty handed.\u003c/em\u003e (Female participant, Melbourne Workshop)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eI just didn\u0026apos;t know what our rights were... We didn\u0026apos;t know that we had rights\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eCultural and language suitability were critical to the acceptability of disability and health services for people from Syrian and Iraqi refugee background seeking care and support. Service providers, including refugee services, were not always aware of the different languages spoken by Syrian and Iraqi refugees (Chaldean, Assyrian or Syriac), and sometimes assumed any Arabic-language interpreter would be suitable:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI once had a fall so I went to the\u003c/em\u003e [refugee health service] \u003cem\u003eand requested Chaldean translator but they brought me an Iranian who was interpreting in Assyrian, so I didn\u0026rsquo;t understand him\u003c/em\u003e (Male participant, Online Workshop 4).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eYes, they may bring an Assyrian translator from Iran for the Syriac which Iraqis and Syrians wouldn\u0026rsquo;t understand\u003c/em\u003e (Male participant, Online Workshop 4).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eI also have difficulty with the translator in his knowledge of Iraqi Arabic\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eAlso based in the Syrian and Iraqi culture was the expectation that when a family member has a disability, care and support is needed by the whole family and not only by the person with disability:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI have a child who has a disability, but frankly, the family \u0026hellip; If one person in the family is disabled, I see the whole family as if they are disabled\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThey focus on the disabled person, but the rest will definitely be harmed. It is impossible that the rest of the family members who are healthy in the family will not be harmed by the presence of this disabled person\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eI mean my husband is the disabled person. I mean, when the head of the house is disabled, they\u003c/em\u003e [services are] \u003cem\u003esupposed to help\u003c/em\u003e [more]. \u003cem\u003eBut I didn\u0026rsquo;t see this\u003c/em\u003e (Female participant, Online Workshop 3).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThis clash of cultural values suggests that some service providers were not familiarising families caring for a person with disability with the suite of family support services or helping them to make connections with family supports. In effect, this approach prevented people with disability and their carers from taking the first steps in seeking the services they needed to assist with caring for their loved ones.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eNow I am looking for someone\u003c/em\u003e [to] \u003cem\u003elive with me because I am a lady who needs someone to live with me like my mum or my sister for all the time\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eI came to Australia and left my mother and father. I presented a request for my mother to come here so that she could take care of my daughter. If my mother was present here, many of my problems would have been reduced \u0026hellip; I made an application but they refused. I applied twice and they refused. She couldn\u0026rsquo;t come here.\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eWhere supports were available, they did not always suit participants\u0026rsquo; cultural background. One participant who made the difficult decision to accept a nursing home placement for her husband recounted her resulting estrangement from her sons and daughter, leaving her isolated with no social support.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eIn summary, I let my husband\u003c/em\u003e [go] \u003cem\u003ein a nursing home. Then my daughter fought with me and all my sons criticised me. I have three sons and one daughter, all of them became a group, they became a group against me. I am alone for four months now\u003c/em\u003e (Female participant, Online Workshop 1).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eFigure 4 represents this participant feeling alone and isolated without her family\u0026rsquo;s support.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eGender.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eFemale participants were especially vocal about their need for support from their extended family, and the data suggests that mothers of children (including adult offspring) with disability experienced the stress of being the only support for their family.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI ended my married life, in this short period of time, my husband left me and left the girls, and I don\u0026apos;t know what the reasons are. I mean, I have a lot of pressure. But he left us alone. Frankly, we needed him\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eService users\u0026rsquo; ability to seek.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eThere was a misalignment of the values upon which the Australian service system is based and the values of Syrian and Iraqi people from refugee backgrounds. This meant participants experienced lack of empathy and understanding, as well as poor quality services from service providers.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI mean, we left our country and were displaced and lost all our homes, and we will find some negligent employees who do not\u003c/em\u003e [understand] \u003cem\u003eyour feelings\u003c/em\u003e (Male participant, Online Workshop 2).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eDr. JB basically does not cooperate with us at all. I give him a form, for example, I say \u0026lsquo;I want you to fill this form in\u0026rsquo;. He is intolerant of me, and says that \u0026lsquo;you daily bring a form, and every day you do these things\u0026rsquo;. I mean, he does not cooperate with us at all\u003c/em\u003e (Male participant, Online Workshop 2).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eWhere participants expected services that supported the whole family, they instead found that siblings without disabilities were not automatically supported. As a result, participants expressed concerns about the impact upon siblings of lifestyle restrictions such as staying home with the child with disability because there was no family support.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eMy oldest girl is disabled, okay, the matter is finished. But this healthy child suffers from problems, and I begin to feel, with the passing of time, I see her seem to become nervous or depressed, even though she is a young girl of 10 years old\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eIt was apparent that families in this situation were not aware of mainstream youth or family support services that could provide support for siblings. Some participants were more empowered, however, in responding to poor or neglectful services for their family member with disability.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI am not happy\u003c/em\u003e (with) \u003cem\u003etoo many support workers. I have changed\u003c/em\u003e (workers) \u003cem\u003ebecause this support worker just stays on their mobile\u003c/em\u003e (phone) (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eFigure 5 represents participants\u0026rsquo; perception of the difficulties they face in accessing services.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eDimension 3: Availability and accommodation.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eAccording to Levesque, Harris and Russell (7) availability and accommodation relates to geographic location, accommodation, opening hours, and appointment mechanisms.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eGeographic location.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eThe issue of geographic location was most strongly felt by participants in relation to access to housing and transport. There were disadvantages to being allocated housing some distance from where participants knew other people or were accessing services.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eAs for the housing, yes it\u0026apos;s hard to reside in any place and you have to go for a long way that you aren\u0026apos;t in the centre, to have a healthy home, difficulty with everything and it\u0026apos;s hard to reach home services\u003c/em\u003e (Female participant, Online Workshop 5).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eIt would be far from the area... far from doctors. To live in a distant area while having a disabled person at home, that\u0026rsquo;s really a problem\u003c/em\u003e (Male participant, Online Workshop 5).\u003c/p\u003e\n \u003cp\u003eParticipants struggled to accept the cost of health and disability transport services when traveling within Australian cities or between rural towns.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eI mean, if you want to drive over 30 kilometres, you will have to pay\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThe company told me that every kilometre costs a dollar... I cancelled the company\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eAccommodation/adjustments.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eParticipants were unable to access care and support for themselves or family members with disability when adjustments and accommodations were not made to include the impact of the disability. Navigating the service system was difficult for participants with no access to support coordination and with no understanding of where accessible housing and accessible transport fits into the disability service system.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eWe go to find a house. Most of the houses we see have small bathrooms. Especially since we have a disabled person at home\u003c/em\u003e (Male participant, Online Workshop 3).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eTraveling by train was difficult. It was too far between the platform and the train, so it was difficult to [get on board]\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003eFigure 6 represents the physical access barriers encountered by participants.\u003c/p\u003e\n \u003cp\u003eEqually importantly, participants needed adjustments in the form of translations to allow them to read and understand information and to feel included equally with other people seeking disability support.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eWe don\u0026rsquo;t speak English. They should provide an Arabic\u003c/em\u003e version [of the contract] \u003cem\u003eso we can understand what this is before we sign it\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eSince I don\u0026rsquo;t know how to read or write, I may ask for a translation. I might be put on\u003c/em\u003e [hold] \u003cem\u003ewaiting until someone responds\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eHours of opening, appointment mechanisms.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eThe complexities of the NDIS service system, wherein service delivery is rationed within the budget allocated to the person with disability, led to perceptions of service unreliability.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eThe psychiatrist who came to the house to see my son only comes 5 times a year\u0026hellip; I say why do you not come for example, every month or less than a month to examine him? He told me that the NDIS did not pay\u003c/em\u003e [him to come more often] (Male participant, Online Workshop 2)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eOne of the female employees who is the coordinator between me and this office came and said I will be responsible for you and I will try to help you by providing you services \u0026hellip; But one of the problems we experienced was they call and say we will come to provide you with the service, but they disappear for a month or more, no message, no call, no service.\u003c/em\u003e (Female participant, Online Workshop 2).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eService users\u0026rsquo; ability to reach.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eParticipants were constrained in their ability to reach health and disability services because their living environments were not sufficiently supported or accommodated by service providers. Common barriers included appointments that were infrequent or required long waiting periods; having to travel long distances, often on public transport that was difficult to navigate for people with disability; housing that was too small and inaccessible for people with disability.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eDimension 4: Affordability.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eAccording to Levesque, Harris and Russell (7), affordability encompasses direct costs, indirect costs, and opportunity costs.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eDirect costs.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003ePeople with disability and family members from refugee backgrounds who are reliant upon Australian income support payments found it difficult to meet costs such as medical gap fees, dental costs and housing, as well as incidental costs incurred in caring for a family member with disability.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eHonestly, when you have a disabled family member at home, you devote yourself to that person. You can\u0026apos;t go out, you can\u0026apos;t work. You want to devote yourself to that person. Your salary is \u0026hellip; they give you A$200. What would you do? I think you would move\u003c/em\u003e (Male participant, Online Workshop 4)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eParticipants found services that were excluded from NDIS and Medicare, such as some imaging and specialist medical and dental treatment, housing and utilities, were unexpected cost impositions.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eWe have to go to specialist doctors. The specialist doctor has made x-rays that cost me A$200 and other x-rays which also cost me A$200\u003c/em\u003e (Male Participant, Online Workshop 1).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eDental services in government hospitals are very few, and if they ask for a small amount, they do not help us. The salaries are very limited and we have very many requirements\u003c/em\u003e (Female participant, Online Workshop 2).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThe family who has a disability \u0026hellip; They do not have any assistance on the bills for electricity, gas, water, and so on\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eIndirect costs.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eThe constraints and exclusions imposed by NDIS funding were keenly felt, with participants questioning the inflexibility of NDIS funding. The combination of not knowing how to navigate the service system and facing high costs of services made it difficult for participants to trust service providers.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eBut there are companies that take advantage of you when they see you for the first time\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eFor a car, just a taxi that drives me to the clinic and goes to finish other work and then comes back to take me home. Even if [this takes] an hour and a half they [consider it to be] three hours, [and] they take the full amount of A$300\u003c/em\u003e (Female participant, Online Workshop 2).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eFinancial pressures contributed to a sense of hopelessness for some participants.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI cannot live with this limited salary\u003c/em\u003e (Male participant, Online Workshop 2).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eFigure 7 represents costs incurred by participants when supporting a person with disability.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eOpportunity costs.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eLack of support coordination in areas of housing and employment meant participants were under financial pressure and felt insecure.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI am applying for housing. It has been almost a year and a half. So far, I have not received any answer. I am threatened at home. I don\u0026rsquo;t know what I will do when they get me out of the house\u003c/em\u003e (Male participant, Online Workshop 2).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eYes, finding a solution to the housing problem would really improve half of our psychological and financial stress\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eHe told you.... go to the internet. Find a job online. You do not have a language; you do not have a knowledge of this country. Why are they asking you to search online for a job?\u003c/em\u003e (Female participant, Online Workshop 1).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eService users\u0026rsquo; ability to pay.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003ePeople from refugee backgrounds supporting family members with disability, or living with disability themselves, were likely to be disadvantaged by the loss of any income, assets and social capital they may formerly have had in Iraq or Syria, and by their reliance on Australian social service payments. Some participants had been able to gain employment and a regular income, but most found it difficult to meet the costs of housing, medications, disability aids, utilities and other living expenses.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eMoney runs out quickly because it\u0026apos;s spent for example on physical therapy, moving around \u0026hellip;etc. All of this costs and money runs out really quickly\u003c/em\u003e (Female participant, Online Workshop 5).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eYou know all my salary is paid for the rent\u003c/em\u003e (Female participant, Online Workshop 5).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eMedicare does not pay for all of my medications\u003c/em\u003e (Female participant, Melbourne workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eParticipants longed for housing security:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI cry daily because of it [\u003c/em\u003ebeing forced to relocate housing] \u003cem\u003eand when I moved to that house, I prayed to God that the owner won\u0026apos;t come to tell me that it was sold and that I should get out of it\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eDimension 5: Appropriateness.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eAppropriateness is defined by Levesque, Harris and Russell (7) as the technical and interpersonal quality, adequacy, coordination and continuation of health services.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eTechnical and interpersonal service quality.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eParticipants recounted many examples of inappropriate service responses, such as evasiveness and unresponsiveness when seeking help from NDIS or Medicare, which they interpreted as either a lack of skill or apathy on the part of employees.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eAn employee in NDIS\u0026hellip;we called him asking about a file. We gave him numbers, personal information and everything. He didn\u0026rsquo;t know how to enter the system. And then he\u003c/em\u003e [pretended] \u003cem\u003ethat he did not hear. He said, after 40 minutes, \u0026quot;I can\u0026apos;t hear you,\u0026quot; and closed the call\u003c/em\u003e (Male participant, Online Workshop 1).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eUnqualified. They have no idea. They were working in a bank, then come to work in the NDIS... How do you understand the needs that [are] written in the report presented by the doctor or by the provider if you have no background in this matter and you do not know how to appreciate its needs?\u003c/em\u003e (Male participant, Online Workshop 1).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eEven in Medicare, you come across people who are not qualified, who do not have the information.\u003c/em\u003e (Male participant, Online Workshop 1).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eCoordination and continuation of services.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eParticipants identified similar skill deficits and lack of coordination in health services and disability support services.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI am sick with [pain in my] joints. I went for a medical check with three or four doctors, and each of them transferred me from one hospital to another and they did not accept my case\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eHowever, not all participants experienced obstacles in engagement in health services\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eIf you go to the hospital, you will be helped a lot there. If you have a problem, they will transfer you to the right place\u003c/em\u003e (Male participant, Melbourne Workshop).\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThey stood by me and felt all my suffering and seriously I was exceptionally supported. Even my mental state got better as I felt they were sympathetic to me\u003c/em\u003e (Female participant, Online Workshop 4).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eService users\u0026rsquo; ability to engage.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eParticipants struggled with agency and autonomy in determining whether or not a service provider was trustworthy and acceptable.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eI said don\u0026apos;t come to me \u0026hellip; She said sure I will come. She helps me for two hours... I said no... until she knocked on the door. I said I don\u0026apos;t want this service. Did you not tell the senior officials? She said, they must go to you\u003c/em\u003e (Female participant, Melbourne Workshop).\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eOne participant\u0026rsquo;s comments signalled emerging empowerment:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003eIt takes me time, but I\u0026apos;m the type of person who if want to do something I don\u0026apos;t back down from [it], even if it takes me time to do it\u003c/em\u003e (Female participant, Online Workshop 2).\u003c/p\u003e\n \u003c/div\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eAs demonstrated by other published studies (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e), the Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) framework can be an effective tool for identifying systemic barriers to accessing health services and also for assessing service users\u0026rsquo; perceptions of access. By applying the Levesque framework to data on the experiences of people with disability and family members from Syrian and Iraqi refugee backgrounds, we found an emphasis on access appropriateness, affordability, and availability and accommodation, although approachability and acceptability were also of concern. Access barriers to healthcare and disability care were broadly similar to those identified in previous studies on people from refugee backgrounds seeking healthcare (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) and families of people with disability from refugee backgrounds seeking care (Authors\u0026rsquo; Own, 2023;(\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Our study, unlike the majority of studies reviewed by Cu et al.(\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e), included analysis not only of the dimensions of access from the systems perspective but importantly from the perspective of service users. We applied the Levesque, Harris and Russell framework as a deductive lens to understand the impacts of access barriers and the factors that prevent people with disability and family members from refugee backgrounds from perceiving, seeking, reaching, affording and engaging with the service system. This perspective, absent in the analysis by Cu et al.(\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e), made it possible to understand personal impacts on service users of systemic access barriers. For instance, when participants viewed disability as impacting the entire family, rather than solely the person with disability (as framed by the NDIS), their expectations of support were unmet. Infrequent appointments, long waits for appointments and long waiting times in waiting rooms signalled unreliability, and challenges to participant agency and autonomy were interpreted as untrustworthiness.\u003c/p\u003e\u003cp\u003eThrough this data, access to healthcare can be seen to be a dynamic process, as argued by Cu et al. (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e), influenced, for instance, by the ready availability of translated and culturally appropriate healthcare information that can support health literacy of people from refugee backgrounds and therefore empower them as service users. In terms used by Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) participants\u0026rsquo; abilities to seek and access care were challenged by their lack of knowledge about care options (Ability to Perceive); their uncertainty about their rights when navigating a service system that was difficult to comprehend (Ability to Engage), and they found it difficult to exercise autonomy or choice, to find cultural supports such as extended family to help with disability care, and to gain facility with language (Ability to Seek). However, what the Levesque, Harris and Russell (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) framework does not include is how emotion interacts with access, which for a group of people who have experienced displacement and ongoing trauma, is essential to consider. Service barriers described by people from refugee backgrounds typify a failure of health and disability service systems and individuals within them to understand the cultural and emotional factors that influence people from refugee backgrounds\u0026rsquo; ability to perceive, seek and engage with care providers (e.g., the general practitioner who refused to sign a form; the aged care assessment team that recommended placement into aged care without exploring the cultural consequences).\u003c/p\u003e\u003cp\u003eHealth and disability service systems for people with disability and family members from refugee backgrounds such as the NDIS, Settlement Support Services, Medicare and Centrelink would be more effective pathways (and not barriers) to care if their responses to people with disability and family members from refugee backgrounds were incorporated into health promotion strategies, properly translated and targeted to newly arrived and more established refugee communities, and within a framework of social determinants of health. Such promotional material should apply strengths-based communication using language and images suitable for different cultures (in this case Syrian and Iraqi). It is incumbent upon health and disability care practitioners to better understand the personal resettlement challenges faced by people from refugee backgrounds, especially for those who need to navigate both health and disability service providers with differing perspectives on choice and control. Demands made upon people from refugee backgrounds from disability and health service system responses, such as onerous travel to appointments and insecure accommodation, add emotional demands and further access burdens to the economic and social inequities they experience.\u003c/p\u003e"},{"header":"Limitations","content":"\u003cp\u003eThis study was conducted mainly online due to COVID19 restrictions. Apart from one workshop conducted in person, the majority of participants required access to and familiarity with technology. The co-researcher, author two, provided people with significant technical support to enable them to be part of the online workshops but for some people this was a barrier that prevented them from participating. For logistical reasons and due to time and budget constraints, the workshops were conducted in Arabic. This meant some people from minority language groups were not able to participate.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003ePeople with disability from refugee backgrounds are at the intersection of health, disability and refugee services and systems with, at least initially, little understanding of their rights in Australia. Levesque, Harris and Russell\u0026rsquo;s (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) conceptual framework highlights the supply and demand factors at work in the service system and assists delineation of barriers and facilitators of service access, but places little emphasis on the emotional impacts of such barriers. Some practical barriers can be resolved within service systems, such as health promotion strategies using appropriate languages and cultural concepts, training of health and disability support practitioners to respond in culturally appropriate ways, and ensuring all stakeholders respect the rights of people from refugee backgrounds with disabilities. Other, more complex barriers require improvements in service coordination and cultural brokerage beyond the health and disability service systems in recognition of the holistic needs of people with disability and family members from refugee backgrounds.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003cp\u003e The study was conducted in accordance with the Declaration of Helsinki and approved by the Deakin University Human Research Ethics Committee (2021\u0026thinsp;\u0026minus;\u0026thinsp;301). All study participants gave written informed consent to participate in the study.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003cp\u003eNot applicable\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003ch2\u003eCompeting interests\u003c/h2\u003e\u003cp\u003eThe authors declare no competing interests\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003ch2\u003eAuthor details\u003c/h2\u003e\u003cp\u003e\u003csup\u003e1\u003c/sup\u003e Disability and Inclusion, School of Health and Social Development and Institute for Health Transformation, Deakin University, 221 Burwood Highway, Burwood 3125, Victoria, Australia\u003c/p\u003e\u003cp\u003e\u003csup\u003e2\u003c/sup\u003e Social Work, School of Health and Social Development and Institute for Health Transformation, Deakin University, 1 Gheringhap St, Geelong 3220, Victoria, Australia\u003c/p\u003e\u003cp\u003e\u003csup\u003e3\u003c/sup\u003e School of Social Sciences, UNSW Sydney, Australia\u003c/p\u003e\u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e\u003cp\u003eThis research was completed with the assistance of a grant from the Australian National Disability Research Partnership in 2021.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eAuthors contributed equally to the work.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eFigures 2-7 were created by Nasan Esber.\u003c/p\u003e\u003ch2\u003eData availability\u003c/h2\u003e\u003cp\u003eN/A\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eRefugee Council of Australia. Key Points on Australia's Humanitarian Program 2024-25 Discussion Paper Surry Hills, NSW 2024.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eAustralian Department of Home Affairs. 2024\u0026ndash;2025 Humanitarian Program Discussion Paper In: Affairs H, editor. Canberra, ACT 2024.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDuell-Piening P. Refugee resettlement and the Convention on the Rights of Persons with Disabilities. Disabil Soc. 2018;33(5):661\u0026ndash;84.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDew A, Lenette C, Wells R, Higgins M, McMahon T, Coello M, et al. In the beginning it was difficult but things got easier\u0026rsquo;: Service use experiences of family members of people with disability from Iraqi and Syrian refugee backgrounds. J Policy Pract Intellect Disabil. 2023;20(1):33\u0026ndash;44.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eCarpenter TG. Tangled web: The Syrian civil war and its implications. Mediterranean Q. 2013;24(1):1\u0026ndash;11.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDowse L, Dillon-Savage I, Dew A, Strnadov\u0026aacute; I. Integrated responses for people with cognitive disability and complex support needs: Factors and principles. Evid Base: J Evid reviews key policy areas. 2020;2:10\u0026ndash;61.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLevesque J-F, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health. 2013;12:1\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eCu A, Meister S, Lefebvre B, Ridde V. Assessing healthcare access using the Levesque\u0026rsquo;s conceptual framework\u0026ndash;a scoping review. Int J Equity Health. 2021;20(1):116.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eShrestha-Ranjit J, Payne D, Koziol-McLain J, Crezee I, Manias E. Availability, accessibility, acceptability, and quality of interpreting services to refugee women in New Zealand. Qual Health Res. 2020;30(11):1697\u0026ndash;709.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eShaw J, Abejirinde I-OO, Agarwal P, Shahid S, Martin D. Digital health and equitable access to care. PLOS Digit health. 2024;3(9):e0000573.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRobinson S, Frawley P, Dyson S. Access and accessibility in domestic and family violence services for women with disabilities: Widening the lens. Violence Against Women. 2021;27(6\u0026ndash;7):918\u0026ndash;36.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eParajuli J, Horey D. Barriers to and facilitators of health services utilisation by refugees in resettlement countries: an overview of systematic reviews. Aust Health Rev. 2019;44(1):132\u0026ndash;42.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBellamy K, Ostini R, Martini N, Kairuz T. Access to medication and pharmacy services for resettled refugees: a systematic review. Aust J Prim Health. 2015;21(3):273\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eTaylor J, Haintz GL. Influence of the social determinants of health on access to healthcare services among refugees in Australia. Aust J Prim Health. 2018;24(1):14\u0026ndash;28.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eColucci E, Szwarc J, Minas H, Paxton G, Guerra C. The utilisation of mental health services by children and young people from a refugee background: a systematic literature review. Int J Cult Mental Health. 2014;7(1):86\u0026ndash;108.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eHadgkiss EJ, Renzaho AM. The physical health status, service utilisation and barriers to accessing care for asylum seekers residing in the community: a systematic review of the literature. Aust Health Rev. 2014;38(2):142\u0026ndash;59.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRobertshaw L, Dhesi S, Jones LL. Challenges and facilitators for health professionals providing primary healthcare for refugees and asylum seekers in high-income countries: a systematic review and thematic synthesis of qualitative research. BMJ Open. 2017;7(8):e015981.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eHoffman SJ, Robertson CL. A systematic review of Karen refugee health. Int J Migration Health Social Care. 2016;12(1):1\u0026ndash;15.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003ePace M, Al-Obaydi S, Nourian MM, Kamimura A. Health services for refugees in the United States: Policies and recommendations. Health. 2015;5(8):63\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRfat M, Zeng Y, Yang Y, Adhikari K, Zhu Y. A Scoping Review of Needs and Barriers to Achieving A Livable Life among Refugees with Disabilities: Implications for Future Research, Practice, and Policy. J Evid Based Soc Work. 2023;20(3):373\u0026ndash;403.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eFriedman C. Disparities in Social Determinants of Health Amongst People with Disabilities. Int J Disabil Dev Educ. 2024;71(1):101\u0026ndash;17.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003ePeprah P, Lloyd J, Ajang DA, Harris MF. A qualitative study of negative sociocultural experiences of accessing primary health care services among Africans from refugee backgrounds in Australia: implications for organisational health literacy. BMC Prim Care. 2024;25(1):327.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKaur M, Bridi L, Kaki D, Albahsahli B, Bencheikh N, Saadi A, et al. Funding for refugee Health Research from the National Institutes of Health between 2000 and 2020. JAMA Netw Open. 2024;7(1):e2350837\u0026ndash;e.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eYeshitila YG, Gold L, Riggs E, Abimanyi-Ochom J, Sweet L, Le HND. Trends and disparities in perinatal health outcomes among women from refugee backgrounds in Victoria, Australia: A population-based study. Midwifery. 2024;132:103980.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRobinson S, Fisher KR. Research Handbook on Disability Policy. Cheltenham, UNITED KINGDOM: Edward Elgar Publishing Limited; 2023.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDew A, Murad M, Smith L, Watson J, Robinson K. Online Bilingual Co-Design: Developing Resources with People with Disability and Family Members from Refugee Backgrounds. Qualitative Rep. 2024;29(2).\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eCorresponding author. Angela Dew: [email protected].\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Refugee settlement, disability, service system, barriers","lastPublishedDoi":"10.21203/rs.3.rs-7172241/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7172241/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eAt a time when refugee numbers are increasing worldwide the human rights of refugees with disability are topical. In Australia, government policy changes have led to increases in the number and diversity of people from refugee backgrounds entering the country. However, a mixture of national and state-based systems for refugee screening, assessment and support create barriers for people from refugee backgrounds accessing health, disability, housing and refugee support services. This study examines experiences of Syrian and Iraqi families with refugee background in New South Wales (NSW) and Victoria, Australia, caring for a loved one with disability. The study explores barriers encountered by people from refugee backgrounds at the intersection of health, disability and refugee settlement services.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eA participatory action research method was used to collect data from 39 participants from refugee backgrounds in NSW and Victoria supporting someone with disability. Four online and one face to face workshops were facilitated by a co-researcher with disability communicating in Arabic and English. Participants were asked about experiences accessing refugee support services in NSW and Victoria.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eThe Levesque, Harris and Russell framework was used to categorise participant experiences of systemic and service user barriers when seeking health, disability, housing and refugee support services. Barriers included lack of service system transparency, difficulties in accessing information about services and supports, and participant mistrust in the service system and those who worked in it. Participants\u0026rsquo; cultural and language needs were not understood by service providers. Some participants\u0026rsquo; understanding of disability and appropriate service responses varied from the Australian perspective, and their expectations of the service system\u0026rsquo;s focus impeded their ability to seek out services and support, with understandable emotional impacts.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eThe Levesque framework is useful for understanding practical service system barriers and identifying possible solutions to enable people from refugee backgrounds caring for someone with disability to seek out and engage with services and support. Culturally appropriate health promotion, service system coordination, and staff training in respect and understanding of the rights of people with disabilities from refugee backgrounds and the refugee experience are needed to improve access.\u003c/p\u003e","manuscriptTitle":"Disability Service Access Barriers for Refugees ","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-12 14:24:04","doi":"10.21203/rs.3.rs-7172241/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2025-09-24T17:11:37+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-24T12:36:16+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-17T10:04:25+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"32638904709724451217893994003831608222","date":"2025-09-16T10:57:35+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"314423544520271201798611190971170090914","date":"2025-09-16T10:36:12+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"124842479558525918837237948234308189400","date":"2025-09-11T09:03:02+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"212947168408035172773252453240113343104","date":"2025-09-07T05:54:27+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"232526736359067625061168868344404530147","date":"2025-09-04T19:42:07+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-09-04T12:44:40+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-03T05:03:38+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-08-13T06:21:30+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-08-13T02:39:06+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2025-08-13T02:35:55+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"17b8a9cb-9abd-4a5b-9301-6b38b7e0760b","owner":[],"postedDate":"September 12th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-09-12T14:24:06+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-12 14:24:04","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7172241","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7172241","identity":"rs-7172241","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}