By National Council on Disability (NCD)
Health professionals have an ethical duty to obtain informed consent from their patients in order to proceed with treatment plans. They may disregard this duty when it comes to individuals with intellectual and developmental disabilities (IDD) by presuming that a patient lacks the capacity to make their own decisions or when others are involved in decisions regarding a patient.
Guardianship is a legal process where a court removes some or all of an individual’s decision-making rights and transfers them to another person – a guardian or conservator. This process typically happens when the court determines an individual to be incapable of making personal or financial decisions and deems it necessary for someone else to exercise these decisions on behalf of the individual. These decisions may include matters related to health care, living arrangements, finances, and other aspects of daily life.
Guardianship laws were created to protect individuals deemed unable to make decisions due to disability, age, or illness. However, while guardianship laws were intended to protect individuals from abuse, neglect, and exploitation, they are rooted in negative assumptions of people with IDD and their abilities. This report provides a comprehensive analysis of how guardianship systems affect people with IDD. It highlights the risks to the individual when guardianship is overused or undue, including the inherent loss of autonomy to provide informed consent regarding medical procedures and treatments.
The report also encourages courts to identify and implement less-restrictive alternatives such as supported decision-making (SDM), healthcare surrogates, and powers of attorney, which allow healthcare providers fulfill their fundamental duty of obtaining informed consent from patients. These alternatives allow individuals with IDD to make their own decisions with help from trusted supporters, rather than having decisions made for them by a guardian. The National Council on Disability (NCD) calls for federal agencies and state governments to promote and fund these alternatives, like SDM, while making guardianship a last resort.