The importance of supporting evolving capacity: The need to support young people with cognitive impairment in out-of-home-care

Background: Young people living in out-of-home care (OOHC) are required to make significant decisions when transitioning from care. Without measures to support participation in the planning process, young people, particularly those with cognitive impairment, are at risk of having decisions made for them 'in their best interests' by others and, without capacity to identify will and preference, are at increased risk of being placed under a guardianship order for decision-making. Little is known about (1) how young people with cognitive impairment are supported to develop autonomy in decision-making over time, and (2) what systems and services support the evolving capacity of young people with cognitive impairment in OOHC to participate in transition planning. We undertook a qualitative study to address this knowledge gap and contribute to practice.Methods: We interviewed 17 Young people with cognitive impairment (15-30 years old), 13 parents of young people with cognitive impairment, and 22 other stakeholders supporting young people with cognitive impairment, and analysed results thematically using a human rights framework and Bronfenbrenner's ecological systems theory.Results: We found support for evolving capacity is an active process provided by those close to the young person - family, paid support workers and friends. These supports may not be available to all young people in OOHC. We also found broader systems appear to be barriers to rather than enablers of evolving capacity.Conclusion: This study highlights the opportunity to provide greater support for evolving capacity around young people in OOHC across different systems to support their transition from OOHC and transition to adulthood.

Automated summary

The study found that support for evolving capacity is actively provided by individuals close to the young person, but this support may not be available to all young people in OOHC. Furthermore, broader systems appear to hinder rather than support evolving capacity.