Guardianship only makes the news when something goes terribly wrong. Take Rebecca Fierle-Santoian: Acting as a professional guardian, she placed a do-not-resuscitate order on an elderly man who said that he wanted to live. He died. Fierle-Santoian served as the guardian for some 450 people, and it was later discovered that many of them were placed under DNRs or denied life-sustaining medical care without their input or permission or that of family members or the courts.
Or consider the case of William Dean, who was placed under state guardianship after his mother’s death. Maine’s Department of Health and Human Services sold his home for below market value, got rid of his beloved musical instruments, and euthanized his cat, Caterpillar. Most famously of all, there is Britney Spears and the ongoing battle over who should control the pop star’s life and sizable estate.
These cases make it obvious that guardianship needs reform. But the problem is not a few individuals abusing their power; it is guardianship itself. Stripping a person of their legal rights is inherently dangerous and dehumanizing. Guardianship is built on the patronizing assumption that people with certain disabilities are incapable of being full citizens and need a nondisabled person to act as their proxy in all things. While I do not discourage reform, what we ultimately need is abolition.
According to AARP, about 1.3 million Americans are currently under guardianship. It is hard to say exactly how many because the record-keeping is poor and there are no national standards or federal oversight. As a system, guardianship relies on the assumption that guardians are benevolent and always want the best for their wards. And this is probably true for most guardians: They want to protect their elderly parents or disabled children from financial exploitation and worse. But unfortunately, no system that depends on the individual benevolence of someone with absolute power can be relied on. People under guardianship still have their own opinions and feelings, and they deserve the respect that everyone else is afforded.
Significant disability is real. Some people struggle to make decisions or understand the world around them. In calling for an end to guardianship, I am not being Pollyannaish about the individuals whom it is usually imposed upon. There will always be some need for proxy decision-making. But guardianship should be the nuclear option: It strips every legal right a person has, and once entered, it is extremely difficult to end. Disabled children in schools are legally entitled to the “least restrictive environment” under federal law. This means that children who receive special education are entitled to spend as much time as possible in non-special-education classes, making the same choices as their nondisabled peers. Their educational plans are regularly reevaluated, as people’s needs are rarely static. The same standard is not applied, however, to disabled adults. If a person has difficulty managing money, why should they lose their right to vote or to marry? Instead of stripping them of all legal rights, as is the case with guardianship, courts should consider where a person is vulnerable and what that person needs, just as schools are supposed to do. While schools aren’t always successful in determining the least restrictive environment, at least this standard is something to aspire to. No such standard exists with guardianship.
When it comes to serving disabled adults, there are alternatives to guardianship that attempt to preserve as many of their rights as possible. Supported decision-making is a system in which trusted advisers—usually family members, friends, or care workers—explain complex choices to help a disabled person make their own decisions. Such choices can involve something as simple as what color to paint a bedroom wall or as complicated as whether to get surgery. While supported decision-making is increasing as a legal alternative across the United States, it is still rarely considered as a first option for vulnerable people. It is also generally used only for people with developmental and intellectual disabilities. The support needs of a young person with an intellectual disability and an older person with dementia aren’t too dissimilar, but they exist in different legal universes.
Supported decision-making is not without its own limitations. Depending on the degree of disability, supporters still exert some measure of control over the person they’re assisting. If a person needs help leaving the house, they must rely on someone else’s good will, regardless of the legal rights involved. These practical difficulties, however, are still an improvement over that person having no legal rights at all.