When I am no longer alive: Parents’ views on the future of their disabled adult children with high and complex needs

Abstract

Sooner or later, a question that starts concerning most parents of children with high and complex needs is: What will happen to my child when I am no longer alive? The answer to this question depends upon the parents’ perception of how well their children will be supported in the future when they are no longer there to care for, or advocate for, them. The level of formal (publicly funded) support and informal support (provided voluntarily by family, friends and others) that the parents have access to, or can rely upon, plays a vital part in shaping this perception. In this qualitative study, 14 New Zealand parents and 18 Indian parents were interviewed with a view to understanding their wishes and worries concerning the longterm care and wellbeing of their adult children with high and complex needs; and ascertaining their views on the support mechanisms (both formal and informal) that they consider and value as being useful for their children’s future. Thirteen key informants from both countries were also interviewed with a view to getting an additional perspective on the issues raised by the parents. The data were analysed using a thematic analysis approach guided by a rights-based conceptual framework. The findings revealed that, due to the failure on the part of the policy makers to understand and appreciate the unique support needs of adults with high and complex needs, the formal support system of both countries are falling short in upholding these adults’ rights to adequate support in living and participating in the community on an equal basis with others. It was also found that this group of people are often deprived of opportunities to exercise choice and control over their lives due to the inability of people from both formal and informal networks to understand their children’s non-verbal communication used to express needs and preferences. This study has highlighted that, to adequately support adults with high and complex needs beyond their parents’ lifetimes, it becomes vital that they are provided funding and services commensurate to their needs; that they receive well-coordinated support from both formal and informal systems; and that their parents’ expertise and knowledge are utilised through a meaningful partnership with the state in designing and implementing future-oriented policies and services.