·         Begin discussions regarding autonomy at first opportunity

·         Engage guardians in discussions regarding autonomy as a fundamental moral principle

·         Encourage guardians to:

o    Consider their child with ID as equal to other children with respect to right to self-determination

o    Anticipate future of their child with ID as an adolescent, young adult, etc…

§  Encourage them to envisage and strive for the highest degree of autonomy possible

o    Prepare for a journey that includes learning to interpret their child’s volition/wishes/opinions as best as possible

o    Anticipate situations in which there will be tension between drive for autonomy and protection from harm

·         Expose caretakers to the concept of “supportive decision making”

·         Explore ways of fostering autonomy with caretakers and patients (together if possible)- see Table 1

·         Explore parents/caretakers fears about the provision of autonomy

·         Discuss autonomy vs. risks of harms (and put in perspective)

·         Gently provide reflection/feedback when encountering positive or negative approaches to fostering (or not) a child’s autonomy.

·         Make families aware of factors that foster autonomy in individuals with ID

o    Formal instruction/interventions to foster self-determination

o    Optimizing the environment

o    Training/supporting those providing support

o    Ongoing provision of “choice opportunity”

o    Involve child with ID in educational and transitional planning and goals.

·         Guide families toward resources for “supported decision making”

o    https://www.aclu.org/documents/supported-decision-making-resource-library

·         Advocate for such services in your community.