Gabriele Holtermann via Creative Commons
A crowd protesting artist Peter Max's forced guardianship.
The Population Reference Bureau estimates that within the next eight years, more than seventy-six million U.S. residents will be over the age of sixty-five. Many will remain healthy, active, and engaged for the duration of their lives. Others, however, will need assistance.
This is also true for the more than sixty-one million Americans who live with a disability, nearly eight million of whom are estimated to need help with personal care. That’s where guardianship—or if real estate is involved, conservatorship—comes into play.
“They have the power to end a person’s life, potentially against their will. They also have the power to send a person to a nursing facility, even if in-home services are available.”
In its most perfect form, a guardian is appointed by a court to help an elderly or disabled person who has been deemed “incapacitated”—defined as being unable to manage self-care or the tasks of daily living. The goal is to protect them from abuse, neglect, and exploitation. But as the well-publicized guardianship cases of Peter Falk, Britney Spears, and Wendy Williams have revealed, guardianship can include gross judicial overreach and lead to overly restrictive control by one person over another.
Dr. Sam Sugar, founder of Americans Against Abusive Probate Guardianships, calls guardianship “the perfect crime.” He came to this conclusion after watching a guardian pilfer his mother-in-law’s assets, remove long-trusted 24/7 caregivers, ban family from visiting, and disregard her wishes about end-of-life care.
“My mother-in-law had a massive stroke,” Sugar tells The Progressive, “and despite a Do-Not-Resuscitate order, the guardian ignored her decision. She could not speak and was kept alive artificially because when the ‘ward,’ the term used for the person in the guardian’s care, dies, the gravy train ends.”
Sugar is not alone in this assessment.
An online guardianship toolkit created by the National Center on Law and Elder Rights, an agency of the Department of Health and Human Services, agrees: “Guardians wield immense power over adults in their care.” Indeed, the toolkit warns that guardianship can be “a feeding frenzy for unscrupulous professionals and for a growing number of non-profit corporations.”
In addition, there is a lack of monitoring by state courts to periodically determine if the person actually needs a guardian. In some states, oversight rests with so-called “equity” courts; in other states, surrogates or probate courts are responsible. “It is alarmingly easy for a total stranger to gain control over the life of a senior citizen,” the NCLER manual states..
What’s more, no one knows exactly how many people are under a guardian’s watch. According to the National Council on Disability website, “Most states do not track, on a statewide basis, how many individuals are subject to guardianship, much less describe these guardianships in terms of basic demographic information, whether the guardian is a professional or family guardian, the extent of the guardian’s authority, the assets involved, and other basic questions.”
Despite this dearth of concrete data, U.S. News and World Report estimates that 1.3 million U.S. residents currently have a guardian, and that guardians control at least $50 billion in assets.
So just who gets to be a guardian? Here, too, both record keeping and vetting are shockingly shoddy. “Sixty percent of the time, the court does not review the potential guardian's credit history,” U.S. News reports. “Pretty much anyone can be a guardian.”
Diane Coleman, president and CEO of Not Dead Yet, a national disability rights group that opposes assisted suicide and euthanasia, says that granting medical decision-making to a guardian can be an invitation to wrongdoing.
Guardians, she tells The Progressive, are typically authorized to consent to or refuse life-sustaining or other medical treatment for the person in their care. “In other words, they have the power to end a person’s life, potentially against their will. They also have the power to send a person to a nursing facility, even if in-home services are available.”
The upshot is that some guardians, operating with little-to-no oversight, have gamed the system to enrich themselves. And even if these folks represent only a small fraction of guardians, their actions have prompted advocates to demand better services for those who need them.
Ben Orzeske, chief counsel at the Uniform Law Commission, a 130-year-old organization working to standardize U.S. law and social policy, believes that guardianship laws can be revised to minimize abuse.
A model law, the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act, enacted in Maine and Washington and pending in Alabama, mandates regular court monitoring of guardians to ensure that the least restrictive policies are in place. The law seeks to maximize the person’s independence; guarantees that family members and friends can visit unless a court is obtained to restrict them; and disallows the use of the term “ward.” In its place, the law suggests using “respondent” or “individual subject to guardianship.”
This is progress, yes, but advocates still consider it an imperfect solution.
“Courts are chronically underfunded,” Orzeske adds, which is why several states including Iowa, Mississippi, Nebraska, New Mexico, and South Carolina “have cherry picked parts of the Uniform Act that don’t cost money to implement. For example, he continues, “they may not take away a person’s right to make medical decisions or control their finances, even if they are moved from their home into assisted living.”
Ideally, he adds, each case should be evaluated by an interdisciplinary team that includes the person whose life is being discussed as well as social workers, lawyers, advocates, and medical professionals.
“A lot of states have outdated laws, so the Uniform Law is a way to promote better standards. Every case is different,” Orzeske says. “A person with a serious developmental disability or a person who is comatose will need someone to make decisions that they can’t make for themselves. Someone else may need help with household tasks or personal care but still be able to make decisions on their own.”
Creating an individualized plan for each person needing assistance is, of course, costly, and some advocates like Sam Sugar believe that this makes reform impossible. “Guardianship is fatally flawed and can’t be fixed,” he says.
Fortunately, there is another approach gaining traction among many disability and senior rights activists: supportive decision-making.
Supportive decision-making involves assembling a group of people—professionals, family members, friends, neighbors, or volunteers—who agree to spend time assisting someone who needs help by explaining the situation, presenting options, and helping the person assess what they can do about medical, financial, or other concerns.
Sam Crane, the legal director at the Quality Trust for Individuals with Disabilities, a group that provides pro-bono legal services to people with developmental disabilities in the Washington, D.C., area, says supportive decision-making gives us “an opportunity to rethink the law in a way that maximizes people’s autonomy. We may never be able to completely eliminate guardianship, but in many cases, it’s not the only option.”
Crane uses hoarding, a common reason for a guardianship appointment, as an example.
“We know that it’s not the best practice to just go in and remove someone’s stuff,” Crane says. “Most hoarders have a fear of loss, so when a guardian comes in or hires someone to haul their possession out, it reinforces their fear and the person can end up in an even worse situation.”
The solution, she argues, might be a community-based support team, along with counseling, and day-to-day assistance to get the person to appointments and stay on top of cleaning. If done right, Crane says, the process will make a guardian unnecessary.
“Supportive decision-making is not paternalistic and gives the person self-determination over their affairs,” she says. “It also maximizes the person’s independence.” Even those who need 24/7 care can benefit from this approach. But for it to work, “we have to want to promote alternatives to guardianship and commit ourselves to curbing guardianship abuse.”