Informed Consent

Aligning with the flow of control: A grounded theory study of choice and autonomy in decision-making practices of people with intellectual disabilities

“…Service providers need to understand the extent to which autonomy can impact on the establishment of trusting relationships, especially for those adults who are more vulnerable to exploitation. These findings offer a sort of counter-point to the notion of “supported decision-making” a now prominent element of policy and decision-making literature relevant to adults with intellectual disabilities (Bach & Kerzner, 2010 ; Carey & Ryan, 2019 ; Flynn & Arstein-Kerslake, 2014a , 2014b ). Developing structured forums within supportive services where matters of choice and control can be creatively discussed and debated aiming to enhance autonomy while ensuring safeguarding is vitally important.…”

“…Research has been undertaken on measuring choice availed by people with intellectual disabilities (Houseworth et al, 2018 ) and understanding components of choice-making (Agran et al, 2010 ; Cobigo et al, 2010 ; Donelly et al, 2010 ; McCarthy, 2010 ; McConkey & Collins, 2010 ; Wiltz & Kalnins, 2008 ). Paradigm shifts in service provision such as personalization (Williams & Porter, 2017 ), self-directed support (Bogenschutz et al, 2019 ) and supported decision-making (Bigby et al, 2019 ; Carey & Ryan, 2019 ; Curryer et al, 2019 ; Gore, 2008 ; Shogren et al, 2017 ; Watson, 2016 ) provide guidance so that legal and valued entitlements such as autonomy are implemented with and for service users. Greater focus is now on the recognition and development of interactions in the promotion of self-determination (Cudré‐Mauroux et al, 2019 ).…”

“…Due to the knock-on effect of living segregated lives in mainly group-managed services, inevitably, these individuals have been subjected to restrictions of choice in their lives. They experienced limited opportunities to engage and participate not only in making decisions for themselves as individuals but also in contributing to group and wider society decisions (Carey & Ryan, 2019 ). Whereas today, international and national policies and legislations are devoted to enabling conditions so that people exercise the right of choice (Carey & Griffiths, 2016 ; UNCRPD, 2006 ).…”

“…Similarly, research evidences the rise of differing angles on matters of autonomy for people with intellectual disability as reflected in: actualizing autonomy in daily lives (Bjornsdottir et al, 2015 ); implementing self-directed support (Bogenschutz et al, 2019 ); examining voting rights (Redley et al, 2012 ); health self-advocacy training programmes (Feldman et al, 2012 ) and autonomy support (Alonso-Sardón et al 2019 ; Frielink et al, 2017 , 2018 ; Hawkins et al, 2011 ). As society seeks to operationalize such legislations and policies in practice discourse on matters such as processes and experiences of decision-making are brought to the fore (Bjornsdottir et al, 2015 ; Chou & Lu, 2011 ; Jenkinson et al, 1992 ; Jenkinson & Nelms, 1994 ; Rogers et al, 2020 ; Suto et al, 2005 ; Whitehead et al, 2016 ), supporting decision-making (Bigby et al, 2019 ; Carey & Ryan, 2019 ; Curryer et al, 2019 ; Gore, 2008 ; Shogren et al, 2017 ; Watson, 2016 ) and associated policy and research (Flynn & Arstein-Kerslake, 2014a , 2014b ; Bach & Kerzner, 2010 ; Carney, 2013 ; Jenkinson, 1993 ; Kirkendall et al, 2017 ).…”

“…In doing so, it demonstrates a seismic cultural shift away from a paternalistic and ‘best interests’ approach towards persons with intellectual disabilities to a rights-based approach to choice and autonomy in decision-making. However, strengthening the commitment to human rights as endorsed in theoretical, legal and practice documentation has not been sufficient enough to guarantee and protect individuals with intellectual disability, as for many, the universality of human rights has not yet been fully realized (Carey & Ryan, 2019 ).…”