“Time's Up”: The Experience of Entering Residential Aged Care for Young People with Acquired Neurological Disorders and Their Families

Abstract

Background and aims: Previous research has highlighted that living in residential aged care (RAC) is associated with a range of negative outcomes for adults with acquired neurological disorders. This study sought to understand the lived experience of entering RAC for young people and their family members and characterise their needs during this process.Method: Data included 64 written and verbal submissions to the 2015 Senate Inquiry into the Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia. In line with hermeneutic tradition, text was analysed using thematic analysis.Results: Entry to RAC was experienced as a complex process that coalesced around three key events: an unexpected health crisis, a directive that time's up and the individual is required to leave the healthcare setting, with a subsequent decision to move into RAC. This decision was made in the absence of time, knowledge of options or adequate support.Conclusions: Findings suggest that there are both immediate practice changes and longer term policy responses that can support the health and disability systems to uphold the rights of people with acquired disability to choose where and how they will live their lives.

Exploring the efficacy of housing alternatives for adults with an acquired brain or spinal injury: A systematic review

“…Important outcomes have been associated with housing, including the person's degree of community integration and participation, psychosocial well-being (i.e., satisfaction, choice and control in everyday decision-making and adjustment) and quality of life (Ahmed, Quadir, Rahman & Alamgir, 2018;Brajković, Godan & Godan, 2009;Dwyer, Heary, Ward & MacNeela, 2019;Trezzini, Brach, Post, Gemperli & SwiSCI Group, 2019). Unfortunately, people with ABI or SCI have typically reported very poor housing experiences (Barry, Knox & Douglas, 2019;Commonwealth of Australia, 2009;Dwyer et al, 2019;Stancliffe et al, 2011;Taleporos, Craig & Brown, 2013), meaning that their living situation is likely to negatively impact other aspects of their lives and recovery.…”

A scoping review to explore the experiences and outcomes of younger people with disabilities in residential aged care facilities

“…Locating appropriate community housing for young adults with disabilities (such as acquired neurological disorders, developmental, intellectual, physical or sensory) is currently an international challenge for the disability, health and aged care sectors. Young adults with long-term high support needs have limited viable housing options following serious injury or illness (1)(2)(3). Sadly, residential aged care designed for older adults is the first and final option for many young adults with disability.…”

“…For young people with disability, being placed in an illequipped environment often means a number of their basic human needs go unmet (e.g., social interaction, community participation, autonomy and privacy) and they can also be at risk of physical, mental and social harm (2,6,(21)(22)(23)(24)(25). Furthermore, most young people living in aged care are provided with little or no choice in regard to their living arrangements and are required to navigate multiple complex systems in order to move to more suitable accommodation (1). Young people who are placed in aged care inappropriately, and without choice, are thus vulnerable to a variety of detrimental physical and mental health outcomes.…”

“…The current review focussed on the population of young people with disability (18-65 years) who were either currently living, or had previously lived in, an aged care facility, and their caregivers. While acquired brain injury is often the most common disability type of younger people in aged care, other disability types include degenerative neurological conditions, cerebral palsy, intellectual disability and spinal cord injury (1)(2)(3)7,19,22,24). Additionally, some younger people in aged care have more than one disability type (19).…”

The Things that Help, the Things that Get in the Way: Working Together to Improve Outcome Following Acquired Brain Injury

“…How could she be denied the opportunity and support of a rehab program? Australian Senate Inquiry into Adequacy of RAC for Young People Verbal submission 1103b, mother (Barry, Knox, & Douglas, 2018).…”