Adults with intellectual and developmental disabilities and participation in decision making: ethical considerations for professional-client practice.
Put respect for the adult client’s choice at the center of every clinical move.
01Research in Context
What this study did
Lotan et al. (2010) wrote a think-piece for clinicians who serve adults with intellectual or developmental disabilities. The authors map how respect for the person can guide every decision you make together.
They do not test a new procedure. Instead they line up core ethics—autonomy, empowerment, dignity—and show how to weave them into daily practice.
What they found
The paper argues that the client’s right to self-direction should beat out convenience or risk-avoidance. When respect leads, staff shift from guardians to partners.
Concrete moves are offered: use plain language, offer real options, record the client’s own words in the plan, and review choices often.
How this fits with other research
Embregts (2000) set an earlier marker, urging virtue ethics—focus on the helper’s character. Lotan et al. (2010) keep the moral heat but move the spotlight onto the client’s authority, not the clinician’s virtues. The baton passed from ‘be good’ to ‘let them lead.’
Three later qualitative studies show the idea in action. Bouck et al. (2016) watched adults with ID negotiate diabetes tasks with staff moment-by-moment. Vallury et al. (2025) saw women with ID make informed contraceptive choices when given accessible facts and time. Hooren et al. (2002) replaced food-lockdown with shared planning for adults with Prader-Willi syndrome. All three teams found the same pattern: safety and autonomy grow together when staff share power.
Franke et al. (2026) recently scanned 125 papers and listed ‘autonomy’ and ‘person-centredness’ as top healthcare values for people with rare genetic disorders. Their map folds Lotan et al. (2010) inside a broader evidence base, proving the ethical argument has held for over a decade.
Why it matters
Your consent forms, goal sheets, and behavior plans can either shrink or expand client control. Swap one scripted question for an open choice today—‘Do you want to start with reading or math?’—and you are living the Gurit guideline. Small choice loops build the habit of shared decision-making that these studies say improves dignity, compliance, and quality of life.
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02At a glance
03Original abstract
In this article, the authors challenge professionals to re-examine assumptions about basic concepts and their implications in supporting adults with intellectual and developmental disabilities. The authors focus on decisions with significant implications, such as planning transition from school to adult life, changing living environments, and managing health issues. The analysis highlights important concepts that are less often addressed: autonomy, empowerment, participation in decision making, asymmetrical power, outer-directedness, and respect for persons. The authors suggest that professionals adopt a moral principle of respect for persons as an overarching guiding principle in their work with adults with intellectual and developmental disabilities. The value of self-determination and person-centered planning processes are placed in the larger scope of ethical practice. The authors offer a set of practical considerations that encourage respect for these individuals by involving them in the decision-making process in situations that have a large impact on them.
Intellectual and developmental disabilities, 2010 · doi:10.1352/1934-9556-48.2.112