Parental negotiations of the moral terrain of risk in relation to young people with intellectual disabilities

Abstract

This paper draws upon parental accounts from a study of the process of transition for a cohort of 28 young people with relatively severe intellectual disabilities who left special schools in 2004 and 2005 in two adjacent English localities. This paper examines how parents negotiate these boundaries and position themselves in relation to risk. A primary concern identified by parents during this transition period focuses on the risk of harm facing these vulnerable young people (whether through accidents or through sexual, emotional, physical or financial abuse) as they move into the adult world. These concerns are juxtaposed with discourses that increasingly promote the possibilities for people with intellectual disabilities to express and follow their own wishes and aspirations. For example, the policy agenda in England and Wales actively endorses the start of adult life as a time of opportunity for young people and promotes the values of independence and choice. In accounting for the management of risk in the young people's lives, we conclude that parents navigate complex boundaries between being seen to be over-protective and 'letting go'; between trusting others to act in the young adults' best interests and allowing these young people the autonomy to negotiate risk.

A family systems perspective on supporting self‐determination in young adults with intellectual and developmental disabilities

“…Moreover, these stories highlight the importance of individualized transition plans, with ongoing efforts to achieve the right balance between encouraging choice and independence and protecting safety and best interests. Consistent with previous findings (Almack et al, ; Foley, ; Isaacson et al, ; Saaltink et al, ), parents expressed difficulty in determining when, and to what extent, to become involved in their young adults' lives. Interestingly, the balance between independence and protection shifted slightly over the course of the study, as parents gradually recognized their young adults' developing independence and redefined their caregiver roles.…”

“…In the case that all members' needs and preferences cannot be simultaneously realized, families may knowingly or unknowingly override the wishes of members with IDD by appealing to practical considerations, citing moral justifications or expressing that they “know best” (Arellano & Peralta, ; Pilnick et al, ). Another challenge arises as families try to find a balance between promoting independence and protecting members whom they perceive to be vulnerable to harm (Almack, Clegg, & Murphy, ; Saaltink et al, ). In navigating these competing discourses, caregivers may feel emotionally challenged by time and financial constraints, professional opinions and societal constructions regarding their competency (Almack et al, ).…”

The transition into adulthood for children with a severe intellectual disability: parents’ views

“…Existing intellectual disabilities literature focusing upon parents' views of their child's transition into adulthood have explored perceptions of their child's vulnerability to risk (e.g., Almack, Clegg and Murphy, 2008;Heslop, Mallet, Simons and Ward, 2002) and the parent-professional relationship (e.g., Clegg, Sheard, Cahill and Osbeck, 2001;Knox, 2000). Additionally, a recent systematic review of 17 empirical studies identified that factors such as child behavioural difficulties (e.g., challenging behaviour), unhelpful parental coping strategies (including avoidance and self-blame) and poor family cohesion were associated with parental stress when caring for a child with an intellectual disability (Biswas et al, 2014).…”

Parents' accounts: Factors considered when deciding how far to involve their son/daughter with learning disabilities in choice-making

“…Research involving families of young people with learning disabilities has also identified that parents can facilitate or impede their son/daughter's involvement in choice-making (Grigal et al, 2003;Almack et al, 2009). However, less is understood about the specific roles parents may assume when there are choices to be made for/about their son or daughter, and the processes by which they decide about the role the young person will play in the choice-making process (Rueda et al, 2005, Bianco et al, 2009, Murphy et al, 2011.…”