“…There is consistent evidence of avoidance and protection by caregivers involving people with intellectual disability in dying and death (Cithambaram et al, 2019; Lord et al, 2017; Tuffrey‐Wijne & Rose, 2017; Wiese et al, 2015). This disenfranchisement encompasses (a) exclusion from advance‐care planning and end‐of‐life decision making (Kirkendall et al, 2017; Voss et al, 2019), (b) non‐involvement in funerals (Forrester‐Jones, 2013; McRitchie et al, 2014), (c) not being told of the terminal diagnosis and/or death of a friend or family member (Cithambaram et al, 2019; Forrester‐Jones, 2013), and (d) not being informed about their own dying (McKenzie et al, 2017; Ryan et al, 2011; Todd, 2013; Tuffrey‐Wijne et al, 2010, 2013). There are exceptions to this pattern of exclusion (Forrester‐Jones, 2013; McKenzie et al, 2017; McMaugh et al, 2017; McRitchie et al, 2014).…”