Silencing the voices of foster carers of children with disabilities in the care system

Abstract

The article explores the hidden dimension of caring for a child with a disability: the silencing of foster carers’ voices resulting from the lack of recognition and devaluation of their experiences by institutions and society. It reveals a dual phenomenon: while institutions and society expect foster carers to provide continuous care, emotional closeness, and self-sacrifice, they do not always receive adequate psychosocial and institutional support or enjoy rights equivalent to those of biological parents. The study demonstrates that foster carers’ experiential knowledge is not recognised as equivalent to professional knowledge, while their opportunities to participate meaningfully in decision-making concerning the child’s welfare remain restricted. This finding resonates with Foucault’s conceptualisation of power, whereby institutions exercise power through mechanisms of control, surveillance, and regulation, positioning foster carers not as equal partners but primarily as executors of care. These dynamics are closely related to the phenomenon of “quasi-motherhood”, in which foster carers assume both caregiving and parenting-like roles, caring for a child with a disability as a mother would, while in complex situations they are often left to cope independently, without adequate support or decision-making power within the care system. Foster carers’ advocacy efforts frequently encounter negative responses from formal “supervisors” within the care system. Consequently, carers learn which issues can be expressed openly, and which are better left unspoken. They also learn to regulate their emotions and carefully consider when and how to express their views. This creates a paradoxical situation: institutions expect foster carers to provide continuous care, emotional closeness, and self-sacrifice, while not consistently providing adequate psychosocial support or rights equivalent to those of biological parents. The article argues for the expansion and implementation of a human rights-based approach within the Lithuanian child care system. Such an approach should not only contribute to reducing discrimination against children with disabilities in institutional care but also promote the development and strengthening of comprehensive services for children with disabilities and their formal caregivers.