The number of younger people with high care needs due to acquired disability from trauma or progressive illnesses has grown significantly in the past few decades. As a result many younger people with high care needs are unable to access age-appropriate housing and support, and reside in residential aged care or other inappropriate settings. Others live with family members who often struggle to navigate the disability support system and access services. Research has concentrated on quantifying the number of young people with high care needs residing in different settings and describing the experiences of housing and support for individuals with specific health conditions. However, in order to develop policies which will effectively address the housing and support needs of this growing population, research is required to improve our understanding of the lived experience of individuals with high care needs in relation to housing and support pathways.
This thesis aims to: 1) investigate the experiences of younger people with high care needs and their family members regarding pathways to housing and support; 2) investigate the experiences of transitions within these pathways for younger people with high care needs and their family members; and 3) to examine the experiences of younger people with high care needs and their family members regarding choice in housing and support.
Qualitative methods were used to examine the experiences of younger people with high care needs and family members involved in decision-making for a younger person with high care needs. Participants were 21 individuals with high care needs aged between 18 and 65 years who had acquired disabilities comprising acquired brain injury (3), spinal cord injury (3), multiple sclerosis (6), muscular dystrophy (7), and Huntington’s disease (2). They resided in a variety of residential settings in Queensland, Australia including residential aged care (2), institutions [disability specific or age specific] (3), group homes (3), the family home (9), and independent living (4). Nineteen family members of a younger person with high care needs also participated.
Participants engaged in two in-depth semi-structured interviews conducted 6 months apart. Participants were asked about their experiences of different housing settings, formal and informal support, transitions from one setting to another, and opportunities to exercise choice. A thematic analysis was conducted with the assistance of NVivo to derive a description of pathways of housing and support and how these varied across personal contexts; to elicit the commonalities and differences in experiences, including transitions and choice in housing and support; and to understand these experiences with reference to key assumptions associated with the concepts of disability and choice. This process involved the development of a coding framework that resulted in three main categories relating to participants' experiences of pathways to housing and support, transitions within pathways to housing and support, and choice in housing and support.
Analysis of data relating to housing and support pathways (aim 1) yielded five key themes: Travelling in different directions; ‘the fight, the battle, the war’; willing but wanting; uncertainty and vulnerability; and redefining social life and roles. Travelling in different directions reflected the considerable variation in the needs, expectations and preferences of young people with high care needs in relation to housing and support. ‘The fight, the battle, the war’ illuminated the importance of family advocacy and their struggles with existing support systems. Willing but wanting emphasised the controversy surrounding payment for informal carers. Uncertainty and vulnerability described the perceptions of individuals and family members regarding housing and support packages which lacked certainty and were perceived as vulnerable to changing policy and funding guidelines. Redefining social life and roles was an important aspect of participants’ pathways especially in response to changes in relationships and social supports.
In relation to transitions within pathways (aim 2), three themes were identified: triggers for transition; inappropriate and impeded transitions; and apprehension about change. Triggers for transition included changes in care needs and access to social support. Inappropriate and impeded transitions reflected the experiences of participants in obtaining age-appropriate housing and support that met their individual needs. Apprehension about change was expressed by individual and family member participants and related to their personal and environmental contexts including housing and support. The themes relating to transition are contextualised in this thesis by an in-depth analysis of the experiences of two individuals.
The experience of choice in housing and support (aim 3) was characterised by two themes which were restricted choices and poorly-informed choice. Restricted choices about care arrangements, housing and funding were experienced by individuals and family members. Participants perceived that their choices had been poorly-informed due to limited access to sources of information about available choices, and the fact that information was not centrally located or collated by a central body.
Conclusions and Recommendations
The qualitative nature of this inquiry provides information on the individual experiences of pathways and choices surrounding housing and support. The findings provide an understanding of how and why current disability policy is not satisfying the housing and support requirements of younger people with high care needs and their family members or caregivers. The findings highlight the importance of individualisation of housing and support packages, and the need for better access to information, and the importance of provision of support to families. The findings may be useful in informing policy related to the impending introduction of a National Disability Insurance Scheme in Australia, and could provide some baseline data against which to evaluate the extent to which the scheme addresses the issues identified in this thesis. Future research recommendations include examination of the linkages between disability, housing and support to inform pathways that promote equality of access, choice and independence.