Older parents caring for adults with intellectual disability

Background: Older parents of adults with intellectual disability (ID) face a lifetime of care. Despite the physical and psychological strains of caring many are reluctant to ‘retire’ and plan for their child’s external residential placement. Method: Using a case study approach, parents and siblings of adults with ID from three families were interviewed in relation to their understandings of past and current care and also future planning. Results: Parents who viewed the carer role as a parental obligation were at risk of isolating themselves from siblings of ID child thereby leaving siblings ill-prepared in an emergency situation. Though all families had considered residential planning, no plans had been established. Explicit barriers included complexity of disability, negative transitioning experiences in the past, and unpredictable changes within the family system. Enablers included personal growth of the adult with ID, and encouragement from professional supports such as psychologists. Discourses of ID may also be a factor, with descriptions of the adult as ‘child-like’ potentially preventing transition into adulthood, such as leaving home. Clinical Implications: Psychologists could play a pivotal role in assisting families who are faced with such non-normative development of the family system, and so encourage future planning for care. Psychologists could also support parents in negotiating complex support systems such as the NDIS