Parents who are looking to protect their special needs children often begin by considering how decisions will be made. Capacity is a continuum, so every special needs child and every family is unique. Essentially there are three models where the individual needs decision-making support. Substitute decision-making, supported decision-making, and court supervised decision-making (guardianships and/or conservatorship).
Substitute Decision-Making
This form of assistance uses traditional tools like powers of attorney and health care advance directives to step into the shoes of the individual being helped. First, it requires that the special needs child have sufficient capacity to execute the documents. These tools do not revoke any of the individual’s rights. Critical circumstances to consider are the extent to which the special needs child could manage his or her affairs if authority is withdrawn. Equally important is choosing an agent. The agent must be trusted, must be willing to undertake the job, must be available when needed and should share similar values.
In general, the level of capacity required to execute a power of attorney is the ability to understand the transaction. In other words, does the individual understand that he or she is giving an agent authority to assist with financial or personal decisions. If someone has a physical disability but is mentally sharp, capacity will not be an issue.
In some states, specialized tools such as educational powers of attorney and psychiatric advance directives have legal recognition. Some agencies such as the Social Security Administration require that you apply under their rules to become, for example, an individual’s representative payee.
The American Bar Association maintains a list of State-Specific Advance Directive Forms for those in other states. For Georgia residents, you can find the statutory form here. The National Resource Center on Psychiatric Advance Directives maintains a website with state by state information here.
Supported Decision-Making
Supported decision-making is an alternative to guardianships (or at-least an alternative to plenary guardianships). It typically involves an agreement between the special needs individual and a helper to develop or explore information together before making a decision. Frequently, the helper does not make decisions for the special needs individual, but ensures the special needs individual has the information necessary to make appropriate decisions. This model allows for self-determination and promotes independence. The National Resource Center for Supported Decision-Making maintains a resource website with information on all 50 states. It’s resource library includes model decision-making agreements.
Court Supervised Decision-Making
Guardianships and conservatorships are court supervised proceedings where rights belonging to the subject of the action (the ward) are removed and given to a court supervised agent (the guardian or conservator). This is the most restrictive decision-making structure and should only be used when less restrictive alternatives are unavailable. In many states, the guardianship code has been updated to promote limited guardianships or less restrictive guardianships, so even if supported decision-making is not officially recognized, it may be possible to structure its equivalent with the Court’s approval.
Substituted Judgment
Regardless of the decision-making structure, paternalism is not appropriate. Decisions should be made that promote the values of the special needs individual. Substituted judgment is a way of considering what we know about the individual’s values with the goal of making the decision that he or she would have made if the circumstances allowed. In Cruzan, the U.S. Supreme Court described substituted judgment when analyzing the Quinlan decision.
“Reasoning that an incompetent person retains the same rights as a competent individual “because the value of human dignity extends to both,” the court adopted a “substituted judgment” standard whereby courts were to determine what an incompetent individual’s decision would have been under the circumstances.”
Since the right to self-determination is not lost merely because an individual is unable to sense a violation of that right, a surrogate should be allowed to exercise that right. The question, at least in the context of refusing life sustaining treatment, is whether there is trustworthy evidence to show what the individual would have wanted.
