Nicholas Clouse could schedule medical appointments for his daughter, but he couldn’t use the money he made from his job as a biotechnician at an ethanol facility to buy her diapers or baby formula. He needed permission from his stepfather first, who as his legal guardian controlled nearly every aspect of Clouse’s life, including how he spent his money. He and his wife couldn’t even buy doughnuts or magazines without getting questioned.
Clouse fought for years to regain the agency that was taken from him when his parents convinced him to enter into a conservatorship after suffering a traumatic brain injury in a car accident when he was 18 years old. On Tuesday, just a few weeks after his rights were finally restored following a lengthy legal battle, Clouse, now 28, testified before a Senate panel during a hearing on “toxic” conservatorships and the need to reform conservatorship law. The issue has received an unprecedented amount of public attention this year because of Britney Spears’ ongoing effort to liberate herself from her father’s guardianship, under which she has been unable to make even basic decisions about her life with any independence.
“In a country that prides itself on the individual liberties that our citizens enjoy compared to elsewhere in the world, this is not acceptable,” Clouse said on Tuesday.
Clouse is — or as of August 24th, was — one of the estimated 1.3 million Americans who aren’t international pop stars living under a conservatorship, which, as David Slayton vice president of Court Consulting Services pointed out in his testimony, is often referred to as the “civil death penalty” because of the degree to which it strips those under the care of a guardian of their rights. “It is the most restrictive form of oversight a court can place on an individual outside of the criminal context,” Slayton said.
Slayton told Congress that in most cases conservatorships are used in good faith to protect individuals with mental disabilities from exploitation, financial or otherwise, but this is not always what happens: “Sometimes the individual is placed in a restrictive facility and rarely visited; sometimes the individual regains mental capacity but remains subject to the guardianship for years; sometimes the trusted guardian begins to pilfer the individual’s hard-earned estate; sometimes the individual dies under the guardianship but the court is not made aware for years.”
The ways in which a guardian can exercise control over those in their care is far-reaching. They can control where they live and work, how they spend their money, whether they can get married, whether they can have children, who they can see, what kind of medical treatment they can receive, and even whether they can vote. It’s also incredibly difficult for those living under a conservatorship to regain their freedom, as Spears’ case has made abundantly clear. Zoe Brennan-Krohn, the ACLU’s staff attorney for disability rights, described the struggle for someone like Spears — and, even more so, for those who are not famous — to extricate themselves from a conservatorship as “a Kafka-esque maze.”
“For far too long, the guardianship system continued to strip people of their core, essential liberties — often permanently — with little interest, oversight, or concern by the general public,” Brennan-Krohn added.
Conservatorships are approved and managed at the state level, but there are plenty of ways the federal government can help bring about reform, which was the point of the hearing on Tuesday. Witnesses provided several options, from fostering better coordination as to how social security benefits (many of those under conservatorships are elderly) are doled out under conservatorships, to intervening on issues arising when conservatorships are transferred over state lines, to requiring states to strengthen due process rights and protections for those under conservatorships, to enacting a guardianship court improvement program.
In addition to suggesting ways to improve state conservatorship processes, witnesses advocated for, as Morgan K. Whitlatch, legal director for the Quality Trust for Individuals with Disabilities put it, “less restrictive and voluntary options … that advance self determination and do not involve the courts.” Whitlatch placed an emphasis on Supported Decision-Making, in which people with disabilities surround themselves with supporters who help them make decisions on their own. “More attention and investment must … be placed in promoting the avoidance of guardianship and conservatorship all together,” Whitlatch says, “as they are over-utilized legal tools that have the effect of removing legal personhood.”
Spears’ case has received a rash of national media attention, and Clouse was able to tell his story on Tuesday, but countless Americans living under conservatorships are being exploited, and will continue to be exploited, until state and federal authorities take steps to rethink conservatorship law.
“After everything I have been through, I am incredibly lucky to be in my current position,” Clouse said. “I have a wife who is my best friend and biggest supporter, a healthy child who is the light of my life, close friends and family, and a successful career. If it was this difficult for someone in my position to be released from an unnecessary guardianship, I cannot imagine what it is like for those who are not as privileged.”