Independent living transitions for young people with cerebral palsy in Australia: aligning policy and practice with family realities

The transition to independent living is a key marker of adulthood for many adolescents and young adults (AYAs) with disability. How families adapt to this highly complex process is an important area for examination, to inform policy and practice that effectively support family life. This study aimed to understand family adaptation processes during the independent living transitions for families of AYAs with cerebral palsy. Semi-structured interviews were conducted with 13 participants who identified as parents of an AYA with cerebral palsy. Data were analysed deductively using the Resiliency Model of Family Stress, Adjustment, and Adaptation highlighting the vulnerability and resiliency factors that shape family adaptation. Vulnerability factors related to a pile-up of demands in family life, particularly the transitions out of the school and paediatric health system that occurred around the same time as the transition to independent living. Resiliency factors included family appraisal processes, family resources, problem-solving capacities, coping strategies, and patterns of family functioning. Participants highlighted the systemic challenges that impacted family adaptation, namely rigid policies, unfamiliar and complex bureaucratic processes, market-driven services, and disability workforce issues. Findings highlight the importance of a family systems perspective in both policy and practice. Policy needs to respond to the needs of both the AYA and their ageing parents, as well as changes in family demands and resources over time. The practice implications are that family involvement, strengths, and expertise are valued and promoted, to support the independent living transition specifically, and family life more broadly.