Alexandra is a woman in her forties who has been described as developmentally disabled and has sometimes had problems managing her budget. She cares about having a conventional appearance and her preference is for V-neck blouses. She unfortunately has early-stage breast cancer, but it could be treated in various ways. She could benefit from having a trusted group of friends advise her on the pros and cons of each option based on what is important to her. However, she has a court appointed guardian who doesn’t really know her. He meets with the doctor once and decides she should have a total mastectomy because it is the “one and done” approach. A lumpectomy would require some diligence in follow up. Alexandra, with the help of her circle, may be quite able to exercise that diligence. Her views though are not consulted.
This scenario, although the details are fictional, illustrates how someone’s life may be changed by a guardian.
Guardianship can abrogate an adult’s most basic decision-making powers. It is a sledgehammer approach to dealing with the problems a person has or is perceived to have in managing aspects of their life. There are many documented cases of abuse by guardians but even when a guardian is trying to act in good faith, she may bring unconscious bias to the process. Decisions may be made that are at variance with the decisions that would have been made if based on the person’s value system, priorities and life experience. This may be especially true with health care choices.
Most state guardianship laws deal with the process by which a guardian can be appointed for a person and pay scant attention to protections for a person placed in guardianship. It is as if the individual is in stasis. For example, although guardians are routinely given the power to make medical decisions, few state statutes delineate the circumstances where a guardian can refuse life sustaining care. This can lead to a lot of ad hoc “quality of life” decisions and even when the courts are involved, they can rule in a variety of ways. A court in one jurisdiction may rule that a guardian cannot refuse life sustaining care unless the individual has an end stage condition or is in a permanent vegetative state. A court in another state may focus on the broad nature of a guardian’s power to make medical decisions without court review. (2)
Efforts to reform guardianship law have been given a substantial boost in August when the American Bar Association, the nation’s leading professional organization for lawyers, passed a resolution urging federal, state, local, territorial, and tribal law and policy-making bodies to adopt the provisions of the Guardianship Bill of Rights, promulgated by the National Guardianship Network in 2022. (3)
The model bill provides an adult who has a guardian with 21 rights in three main areas: access-to-justice rights, core human rights and decision-making rights.
Some examples are:
The right to be present and participate in court.
The right to ask a court to review and possibly change a guardianship or guardian.
The right to be treated with dignity and respect.
The right to have one’s preferences including medical preferences respected.
The right to personal privacy.
The right to confidentiality.
The right to fully participate in all decisions including decisions on one’s care.
The right to receive necessary services.
The right to practice one’s religion.
The right to sexual expression and to have one’s gender identity respected.
The significance of the model bill cannot be overestimated. If adopted in various jurisdictions, it will contribute to a paradigm shift on how persons with guardians are seen, making it clear Constitutional protections are never suspended.
However, protections for people in guardianship cannot be bifurcated from the issue of placement of people in guardianship. Currently, health care and education professionals make referrals suggesting guardianship for youth with disabilities who are coming of age, or social service professionals recommend guardianships for older adults. What has been called a “guardianship pipeline” can no longer be tolerated. (5)
Moreover, although guardianship has always been deemed a state law matter, the federal government must assume a central role in reforming the practice. Thus, a federal Guardianship Bill of Rights Act has been introduced in Congress with the sponsorship of Senators Casey, Fetterman, Sanders and Warren. Among other things, it would create the Guardianship and Other Protective Arrangements and Supported Decision Making Council, charged with promoting less restrictive arrangements for people living under or being considered for guardianships. It would be charged with creating recommended practices for assisting someone out of a guardianship, averting placement in a guardianship, and methods for modifying a guardianship. The Council would be responsible for collecting data on the guardianship practices at both the national and state level. The bill would also provide funding for states to have a protection and advocacy agency focused on the rights of people being considered for and living under guardianship. (6)
The model bill and the federal bill would compliment each other and go far towards consigning traditional guardianship to the dustbin of history.
