Being a pioneer: a qualitative study of moving into individualised housing from the perspective of adults with neurological disability

Introduction

Young adults with neurological disability are a vulnerable cohort who have historically had limited viable housing options following serious injury or illness (Connellan 2015; Wiesel 2015). Unfortunately, the outcome for many is living in housing that is either unsuitable for the person’s needs or not the person’s preferred long-term housing option (Wiesel 2015). Such arrangements include sharing a house with other people with disability (i.e. group homes, shared supported accommodation), living with parents beyond the age when people would usually leave (often living with ageing parents as carers) or living in residential aged care (RAC) facilities designed for an aging population (Taleporos et al. 2013; Connellan 2015). Despite facing multiple barriers to moving due to having high levels of healthcare and support needs, many adults with neurological disability aspire to live as independently as possible in the community (Winkler et al. 2007). Additionally, although shared living arrangements are preferred by some, concerns have been raised about the limited choice available to residents regarding with whom and where they live, inadequate engagement and participation outcomes and limited opportunities to build independence (Wiesel 2011; Mansell et al. 2013; Taleporos et al. 2013; Oliver et al. 2022). In recognition of these factors, there has been a worldwide shift away from shared living towards more individualised models of housing and support (Mansell and Beadle-Brown 2009; Harkes et al. 2014). Individualised housing options are life stage appropriate and can be tailored to an individual’s needs. They aim to support the human rights of people with disability by offering increased self-determination in housing and support (Fisher et al. 2009; Connellan 2015).

The movement towards individualised models of housing has been supported by the shift towards personalised funding for people with disability, such as personalised budgets in the United Kingdom, Ireland and Scandinavia (Department of Health 2012; Spicker 2013; Tøssebro 2016). In the Australian context, personalised funding arrangements designed to increase choice and maximise independence allow people with disability and complex needs to access tailored support packages and individualised housing called ‘Specialist Disability Accommodation’ (SDA) (Australian Government 2020a). This movement enables people with neurological disability and complex needs to move into more independent living situations that have greater potential to meet individual housing needs and preferences (Australian Government 2020b; Wiesel 2020). These dwellings are mostly designed for single occupancy, are situated close to amenities and public transport, incorporate smart home and communication technology, can be customised according to a person’s needs and utilise tailored support arrangements (Wiesel 2020; Aimers et al. 2021).

The available evidence suggests that meeting an individual’s housing needs and preferences is foundational to positive outcomes, including increased self-determination, autonomy, home and community participation, mood, and social relationships (Oliver et al. 2022). However, most existing research has investigated the experiences and outcomes for people with intellectual disability living in individualised housing, with limited research focusing on people with neurological disability (Wright et al. 2020; Oliver et al. 2022). Furthermore, although the transition experience from hospital to home for people with neurological disability is becoming increasingly understood (Turner et al. 2008, 2011; Chen et al. 2020), there is only limited research into the experience of housing transitions. Sloan et al. (2012) examined the outcomes of people with acquired brain injury who transitioned to more home-like housing options (i.e. private homes, including living with parents) to those who remained in disability-specific accommodation settings. The research found that transitions to more independent, home-like situations is possible for people many years post-injury, regardless of injury severity. Home-like settings were also found to be more conducive to flexible support arrangements and were associated with gains in independence and community participation (Sloan et al. 2012). Access to both formal and informal support, financial management, and emotional and behavioural control have previously been found to be common factors in the success of transitioning into more independent living for people with acquired brain injury (McColl et al. 1999).

Despite a small body of evidence supporting the successful transition to more independent and individualised housing, recent literature reviews have concluded that existing research is limited in both quality and quantity, making it difficult to determine the efficacy of individualised housing models (Wright et al. 2020; Oliver et al. 2022). Previous studies have included a number of different housing models and used broad housing classifications (e.g. ‘home-like’, independent living arrangements) that include a variety of living arrangements (e.g. living with parents, living with friends, living in a private rental, living in social housing). High-quality evidence is needed to evaluate and isolate the efficacy of individualised housing specific for adults living with neurological disability. This is especially important in the Australian context, as it is expected that funding for individualised housing (i.e. SDA dwellings) will grow by approximately $700 million per year (Australian Government Department of Social Services n.d.). This substantial investment highlights the critical need for evidence to inform best practice.

In recognition of the need for an evidence base surrounding individualised housing, Douglas et al. (2023) assessed the change in individual outcomes for people with neurological disability and complex needs after moving into newly built, individualised apartments in the community. Participants reported a significant increase in health, wellbeing and home participation after living in individualised housing for 6–24 months, following their move from a range of living environments (e.g. group homes, residential aged care, living with parents). This preliminary research provides a starting point to understanding the outcomes of individualised housing options for people with neurological disability. However, the subjective lived experience of moving into and living in individualised housing, from the perspective of people with disability, is essential for the development of relevant policy and best practice guidelines. Accordingly, the aim of the current qualitative investigation was to gain an understanding of the experience of moving into and living in individualised housing for people with neurological disability.

Methods

Results

The findings of this study provide insights into the transition experience of moving into and living in newly built individualised apartments, informed by people with neurological disability. Two key themes emerged: (1) Pre-move: Not a good fit and (2) Post-move: Being a pioneer. The first theme describes the experience of participants before they moved and was characterised by feelings of hopelessness and dissatisfaction with their housing; the second theme describes the transition experience during the first 24 months of living in their new home in which participants had an overall sense of moving in the right direction. See Table 1 for a summary of the themes and sub-themes.

Discussion

This qualitative study aimed to capture the experience of moving into and living in newly built, well located and appropriately designed housing for people with neurological disability and complex needs. As outlined in the key themes, the findings suggest that moving into a single occupancy dwelling is a positive shift in the right direction. Participants described their pre-move housing as largely unsuitable and not suited to their needs and preferences. These experiences echo previous research that has highlighted the negative impact that having limited choice in living arrangements has on quality of life and wellbeing (Taleporos et al. 2013; Tichá et al. 2013; Salmon et al. 2019; Oliver et al. 2022). Participants talked in-depth about their experiences of moving into individualised housing and highlighted the challenging, but valued, transition process involved in moving into a built environment that offered more choice and independence. These findings build upon similar positive outcomes from the quantitative study that reported improved wellbeing, health and community participation (Douglas et al. 2023). Findings from the current study provide insights into the factors that can make moving into individualised housing challenging, as well as the factors that contribute to increased wellbeing and autonomy. The findings also emphasise the importance of having a good team of support and the complexity of the participants’ support needs. Moving house is considered a highly stressful life event even without the added complexities for people with disability (Haslam et al. 2021). It is therefore not surprising that the challenges involved in this experience were highlighted in the current project.

Exploring the experience of the first 24 months of living in individualised housing from the perspective of people with disability provides valuable insights into the transition period of moving home. This transition period was a time of significant adjustment for participants, with the experience likened to being a pioneer. Although participants valued the experience of increased choice and autonomy in their daily lives, participants described a significant increase in responsibilities with limited preparation and guidance on how to best manage these new roles. Participants described a skill or experience gap between their pre-move living arrangements and their new individualised home. Many participants spoke about feeling unprepared to navigate the support arrangements and household responsibilities in their new individualised housing, describing feeling busy and at times overwhelmed by the experience. Previous research investigating the transition period from hospital into the community following acquired brain injury has found that feeling prepared for discharge from hospital and being linked with appropriate support services post-discharge are important elements that contribute to the transition experience (Turner et al. 2008). Findings from the present study suggest that there is scope to better support people with disability during the transition period of moving into individualised housing. Increased transition planning and assistance with navigating policy, support, and household responsibilities will assist in bridging the gap that currently exists between the housing arrangements.

Findings also emphasise the importance of having a good team of disability support workers. In this study, having a quality team of support workers was perceived as vital to wellbeing during the transition period. For many participants, building a high-quality support team was necessary to feel settled in their new home and to participate in the community. The findings also indicated that participants experienced a broad range of support needs, highlighting the importance of the individualisation of housing arrangements. Individualised support has previously been found to contribute to more positive outcomes for people with disability (Topping et al. 2022). Indeed, meeting an individual’s needs and preferences, as well as the right to choose and have control over one’s own life, are foundational to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (UN General Assembly 2007) and reflected in the policy underpinning the NDIS in Australia (Australian Government 2020a). Despite the importance of having high-quality support, participants in the current study described experiencing significant challenges in building a suitable support team and establishing a structure that suited their personal needs and preferences. Challenges regarding accessing and utilising supports have previously been reported by people with acquired brain injury during their transition from hospital to the community (Turner et al. 2011). Additionally, there is currently limited knowledge surrounding what constitutes quality support for people with disability (Topping et al. 2022). More assistance to develop a reliable support team, in conjunction with further research to better understand what contributes to quality support, is needed to ensure the transitional support needs of people who move into individualised housing are met.

Findings from the current study underscore the overall value of living in individualised housing for people with neurological disability. Although the experience of moving involved challenges, namely managing support and navigating new roles and responsibilities, participants emphasised that these challenges were worthwhile due to the highly valued increase in independence and autonomy gained in their new homes. These findings echo previous research in the context of intellectual disability (Marlow and Walker 2015; McConkey et al. 2018; Salmon et al. 2019) and support the worldwide shift away from shared living to individualised models of housing (Spicker 2013; Tøssebro 2016). Furthermore, the experience‐based findings from the current study, when considered together with the quantitative findings (Douglas et al. 2023), provide compelling evidence of positive outcomes for people with neurological disability moving into individualised housing. In the current study, the initial 24-month period of living in an apartment was clearly a transition period, with participants settling into their homes and beginning to participate in their community. It is likely that, in the larger longitudinal study in which this smaller study is situated, we will find that living in individualised housing presents ongoing benefits and challenges once people have settled into their home and start to participate more fully in their community. Indeed, participants in the current study, when reflecting upon their own lived experience, highlighted that living with a complex disability involves unexpected fluctuations in health. Therefore, there is a need to investigate the ongoing trajectory of people with complex disability who live in individualised housing to ensure appropriate long-term support and services are available, potentially both during and beyond the initial transition period.

The findings of the present study have important practical implications. Although previous research has emphasised the need to acknowledge transition as a distinct phase within the rehabilitation continuum (Turner et al. 2008), the results of the present study highlight the move into individualised housing as a transition experience that necessitates the development of transition-specific policy and support models. A gradual move approach, including support for skill acquisition to live independently, has previously been utilised by people with intellectual disability (Salmon et al. 2019). Our findings indicate that a similar graded transition would likely be valuable for people with neurological disability who move into individualised homes. Findings also suggest that there is a need to assist people in developing a reliable and high-quality disability support team that is suited to their personal needs.

Furthermore, although research about the housing transition experience regarding living arrangements for people with neurological disability now exists, little is documented about the preferred home design and location (Callaway et al. 2021). Participants in the current study discussed the benefits of location and, to a lesser extent, the benefits of tailoring the environment to suit their personal needs. This intersection between people and preferred living spaces thus warrants further investigation from the perspectives of people with disability.

This study has a number of strengths, including the collection of interview data at two time points, capturing pre- and post-move experiences, as well as the completion of data collection by skilled allied health professionals experienced in working with people with complex disability. Additionally, as findings pertain to one type of individualised housing environment (apartments integrated into new mainstream housing with availability of onsite support) for participants who qualified for SDA funding within the rules of the Australian NDIS, appropriate comparisons are made between experiences. However, this study is not without limitations. The sample used in this study is relatively small and reflects the perspectives of people with disability who were among the first to move into individualised housing in Australia. Although code and meaning saturation was evident within the data, it needs to be emphasised that the experiences revealed through this inquiry were particular to this group of participants. Thus, the transferability of the findings needs to be considered in this light. Additionally, although there was no evidence of differences in themes for the participants who completed retrospective pre-move interviews and those who did not, it is possible that the use of retrospective interviews may have influenced reflections shared. However, there was clear evidence in the interviews that participants were actively comparing distinct pre- and post-move experiences. Finally, the current findings contribute to a limited evidence base that has investigated the experience of people with disability after moving into individualised living arrangements. Despite the findings providing valuable insights into the transition period of moving, it is important to acknowledge that these results reflect the first two time points of a 3-year longitudinal study. The longitudinal project will provide much needed insights into how people continue to adjust and the ongoing benefits and challenges of living in individualised housing.

The current study highlights the value of moving into and living in individualised housing from the perspective of people with neurological disability. Pre-move housing arrangements did not suit participants personal needs and preferences and were accompanied by feelings of hopelessness. Despite the challenges involved in moving, the experience of living in individualised housing was highly valued due to an increase in independence and autonomy. Participants gained more control over everyday living choices (e.g. sleep and wake times, meals), as well as more complex choices (e.g. support arrangements). Findings draw attention to the broad range of experiences and support needs of this cohort and, in conjunction with the quantitative study findings (Douglas et al. 2023), highlight the importance of the individualisation of housing arrangements. Findings support the development of personalised funding arrangements that allow people with complex disability to access tailored support packages and individualised housing. Policies and housing payments that foster the development of more contemporary and individualised housing options, such as SDA, are aligned with the human rights principles of the CRPD (UN General Assembly 2007). The challenges experienced by people with disability moving into individualised housing highlight a need for transition-specific policy and support models, including services that assist with the development of an individualised support team.

Data availability

The data that support this study cannot be publicly shared due to ethical or privacy reasons and may be shared upon reasonable request to the corresponding author.

Conflicts of interest

The authors declare that they have no conflicts of interest.

Declaration of funding

This research received no specific grant from any fundings agency, commercial or not-for-profit sectors.

Ethics standard

The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.