The present and future vision of siblings of adults with intellectual disabilities

Siblings play an important role in the lives of individuals with intellectual disabilities, as typically developing children can serve as role models and have a positive influence on everyday functioning. As they reach adulthood, non-disabled siblings may become caregivers for their intellectually disabled siblings, taking part in decision-making and assuming increased — or even sole — responsibility for siblings who require support due to the ageing, illness, or death of their parents. This study presents the findings of a semi-structured interview survey conducted in Hungary on the experiences of siblings in adulthood, at a time when their roles within the family are changing or are expected to change. One aim of the broader survey was to explore the responses of 11 siblings in order to understand how they perceive the future: the care of their intellectually disabled sibling and, importantly, the impact of this responsibility on their own personalities. One of the most important findings, which may offer a lesson for the social care system, is that — due to negative societal attitudes and the characteristics of the institutional system — siblings do not view institutional care as an opportunity to support independent living. According to the participants, the influence of their intellectually disabled siblings on their own personality development was positive, making them more accepting and more supportive of other people’s difficulties.