Supporting Adults with Developmental Disabilities With Informed Consent
It can be difficult to challenge the stigmas that adults with intellectual and developmental disabilities face when it comes to how others perceive their ability to make their own decisions. Here are some practical ways to understand and support informed consent (Approaches to Determine and Manage Sexual Consent Abilities for People With Cognitive Disabilities: Systematic Review):
1. Informed Consent Is Possible—with Supports
Adults with intellectual or developmental disabilities (IDD) can often provide valid informed consent when information is delivered in an appropriate and accessible way. A formal guardian isn’t always required, nor does an absence of a guardian necessarily indicate incapacity (IDD Toolkit).
2. Assessing Decision-Making Capacity
Capacity is both decision and context-specific—not a one-size-fits-all attribute. It can fluctuate over time and across different situations, and should be continually assessed (IDD Toolkit).
3. Supported Decision-Making (SDM) Enhances Autonomy
SDM is an alternative to guardianship where a trusted supporter helps an individual understand, weigh, and communicate decisions—without replacing their legal capacity (Considerations for Alternative Decision-Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities: Policy Statement | Pediatrics, Impact | Volume 23, Number 2 | Sexual Expression for Adults with Disabilities: The Role of Guardianship). The UN Convention on the Rights of Persons with Disabilities recognizes SDM as a fundamental right (Promoting health care decision-making capabilities of adults with intellectual and developmental disabilities - PMC).
4. Communication Must Be Accessible and Person-Centered
Informed consent is only meaningful when information is tailored—using plain language, easy-read formats, visuals, and multiple sessions if needed. Personalized communication helps individuals understand their options and make truly informed choices (Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review | BMJ Quality & Safety).
5. Balancing Support with Autonomy—and the Right to Dignity of Risk
Allowing individuals to make their own decisions—even when they might be risky—supports dignity and growth. Overly protective stances risk undermining self-esteem and fostering dependency (Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review | BMJ Quality & Safety).
6. Guarding Against Coercion and Power Imbalance
Many adults with IDD experience acquiescence—complying with what others want to avoid conflict or exclusion. Supporters or carers may unintentionally override autonomy. Clinicians and caregivers must be vigilant to ensure consent is voluntary, not driven by fear or undue influence ((Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review | BMJ Quality & Safety).
7. Substitute Decision-Making Should Be a Last Resort
When capacity is decisively absent, substitute decision-makers (like appointed guardians) may make decisions—but best practice includes seeking the individual's assent whenever possible (Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review | BMJ Quality & Safety).
Conclusion
Informed consent for adults with developmental disabilities must be built on accessibility, individual capacity assessment, supported decision-making, and respect for autonomy. When properly implemented, these principles empower individuals to participate in—rather than be excluded from—decisions about their own lives.