What About Consent?What About Consent?
Perhaps one of the reasons that the general public is comfortable leaving decisions as to how to treat people with disabilities to the professionals, is their belief that no therapies or treatments can be implemented without informed consent. In theory, this is true. In practice, it is a system that is highly flawed. Children with disabilities are under the guardianship of their parents unless a court has ruled otherwise. Adults with disabilities are their own legal guardians unless a court has ruled them incompetent. Adjudicating an individual incompetent is a complex and time consuming process. In addition, most courts correctly are reluctant to remove guardianship from an individual unless there is a compelling reason to do so. As a result, the vast majority of adults with mental retardation or other developmental disabilities are their own legal guardians and are therefore responsible for providing informed consent for any procedures that may be performed on them.
When an adult with severe or profound mental retardation is his or her own legal guardian, facilities only are obligated to attempt to explain the proposed treatment and to obtain the individual's signature. Other options for addressing the behavior are rarely described. Consent granted under these circumstances cannot be considered "informed consent" since the individual may not fully understand what he/she is being asked to sign, the professional explaining the planned procedure may not be familiar enough with alternative methods, or the professional may simply fail to present options.
The New York State study found that in many cases informed consent was not secured from either the individuals served, or their family members. The executive director of the facility studied said that he did not feel required to secure consent. When consent was obtained, many family members later reported that they felt coerced into approving the treatments. Families in many cases feel that they have no other choices and that they need to cooperate with whatever is recommended by the professionals working with their family member.
Families may feel that the proposed treatment is the best thing for their family member or even that he or she needs or deserves punishment. Family members, however, should not be condemned for allowing such practices. Families, in the vast majority of situations, make what they feel to be the best choices for their family member, often within a limited range of available options. In the case of the New York facility, families were offered the option of withdrawing their family member from the residential facility if they objected to the treatment plans.
Individuals with developmental disabilities and their families are vulnerable to the treatment decisions made by others. They are dependent on the professionals who work with them for shelter, food, clothing, social contact, training and for all other aspects of their lives. In the United States there is no legal requirement for states to provide any residential, vocational or family support services for adults with disabilities. Families therefore, often feel beholding to the service provider. They are well aware that if they question the recommendations of the providing agency they may be left with no supports whatsoever. Both the individual's and the family's opportunity to make an "informed decision" is compromised by this imbalance of power, by the fact that the explanation of the proposed treatment by staff might not be wholly objective and, of course, by the individual's inherent intellectual limitations.