Ten years ago, Nicholas Clouse was driving a shotgun in his friend’s Camaro when the car jerked and he felt himself flying through the air. Clouse’s head hit the passenger side window.
The traumatic brain injury he suffered in the wreckage resulted in severe memory loss, headaches and insomnia. Clouse, who was 18 at the time, did not recognize his friends and family.
Shortly after the accident, Clouse’s mother and stepfather asked to be his legal guardians, which meant they would make all of his financial and health decisions. They said the situation would be temporary. An Indiana judge made it official.
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Years after his recovery, Clouse wanted to make his own choices again — putting gas in his car, buying his daughter diapers and taking his wife out to dinner without needing permission. But he ran into opposition. His parents didn’t want to give up their power, Clouse said, and he had to find a way to fight for his rights.
“They had 100% control over my life, and I just had no say in what I did or anything,” Clouse said in an interview.
If a judge determines that an adult cannot make responsible choices, the person may be placed in court-appointed guardianship. In some states, the arrangement is known as conservatorship.
This system recently came under national scrutiny when pop star Britney Spears sought to end her conservatorship and eventually ended her conservatorship. In September, Clouse testified at a US Senate committee hearing on guardianship reform.
Over time, Clouse’s traumatic brain injury improved. He started working as a welder, met his future wife and got permission from his parents to marry her. Clouse wanted to leave conservatorship, he said, but faced a catch-22. To regain his independence, he needed the advice of a lawyer. But to hire a lawyer, he would need the approval of his parents since they controlled his finances.
The attorney representing Clouse’s mother and stepfather did not return Side Effects Public Media’s request for comment.
Clouse eventually found pro bono legal representation through the Indiana Disability Rights advocacy group. In January 2021, Clouse and his attorney filed a motion to end the conservatorship. According to court documents, his parents responded by insisting on a psychological assessment of Clouse’s decision-making ability. The assessment determined that the guardianship was unnecessary and diminished his ability to make independent decisions.
Eight months later, in August, Clouse’s parents agreed to end the guardianship.
A neglected system
In recent years, court rulings have shifted state policies toward less restrictive options that give adults with physical or developmental disabilities more independence and support to make decisions. Disability advocates say this change is long overdue, and some argue the system needs a complete overhaul.
“People with significant disabilities have long been discriminated against because people think they (lack) the ability to make decisions,” said Derek Nord, director of the Indiana Institute on Disability and Community.
Although the disability rights movement has made “tremendous strides” on many issues, Nord said, further reforms and better oversight are needed to protect people from exploitation.
Guardianship cases often involve people with disabilities, the elderly, people recovering from an injury or medical condition, or people with serious mental illnesses.
An official count does not exist, but the National Center for State Courts estimates that approximately 1.3 million adults in the United States are under legal guardianship. In Indiana, where Clouse lives, 11,139 adults are in permanent guardianship, according to state officials.
In Indiana, establishing guardianship begins with filing a petition. The applicant can present evidence, such as a medical report, and appear before a judge, who then decides whether the person in question should be considered incapable.
Judges can set limits on guardianship — though they rarely do, said Indiana Disability Rights attorney Justin Schrock.
“We’re talking about decisions about where to live, where to get married, where to work, what medical care to get, what to do with their money,” Schrock said. “They are really losing all of their most fundamental human rights.”
Proponents of reform say some guardianship is needed but the legal framework is overused. They argue that people with disabilities can generally make choices for themselves – sometimes with guidance – and should retain this right.
“Before entering this field, I assumed that (entering a) guardianship was a fairly innocuous step,” Schrock said. “I also assumed that there were a lot of protections in place to prevent unnecessary guardianships from being established, which is absolutely not the case.”
Legal guardianship shouldn’t be the default for people who need help making decisions, said Kristin Hamre, professor of social work at Indiana University Bloomington. People learn and grow by taking risks, Hamre said, and restrictive legal arrangements like guardianships rob them of that opportunity.
“The right to risk is so important,” Hamre said. “Risk is where life is, isn’t it? You start walking, you might fall; you start driving, you might have an accident.
No easy solution
Because of the way some state laws are written, guardianship cases often don’t get due process, said Robert Dinerstein, head of the Disability Rights Clinic at American University in Washington, D.C. .
Many states ensure that people at risk of entering into guardianship have legal representation. But Indiana does not. The law allows petitioners – often a parent or family member – to present to the court a consent form signed by the person being considered for guardianship that effectively waives their right to challenge the process or even be present at the court. hearing when the person’s future is decided.
Indiana law also does not require petitioners to submit medical evidence in court, although some courts have local rules requiring it.
“I’ve seen time and time again, attorneys for these guardians will ask the individual to sign that consent form, file it with a petition, often without medical evidence,” Schrock said. “And some of these courts just look at that and say ‘OK’ and then grant conservatorship without ever having laid eyes on that individual.”
Since wardship cases take place in county courts, the manner in which these cases are handled is extremely varied. Large counties with specialty probate courts can devote more time and resources to hearings than smaller county courts, which have a much wider range of cases, limiting a judge’s expertise in a given area.
A task force formed to examine the use of statutory guardianships in Indiana reported that no medical evidence of incapacity was presented in 1 in 5 guardianship cases in the state. The 2012 report also states that in cases where evidence was presented, medical reports were often incomplete or illegible.
Guardianship differs from most other court proceedings in that the burden of proof generally falls on the disabled person, who must convince the judge that the arrangement is not necessary, Dinerstein said.
Dinerstein argues that people at risk of being taken into custody should have the same right to counsel as defendants in criminal cases. “I think the level of loss of liberty demonstrates very clearly that there should be ‘a right to counsel in guardianship cases,’ he said.
This is important because once a person is in custody it is extremely difficult to get out. Dinerstein highlighted the case of Ryan King, a man from Washington, DC, whose dilemma has recently caught the attention of the press. All parties agreed that the conservatorship should end, but its finalization still took years.
“It’s like ‘Hotel California,'” Dinerstein said. “Once a guardian is appointed, even if the circumstances change and you no longer think you need one, it’s really difficult to get the courts to restore your capacity.”
Clouse is now 28 and lives in Huntington, Indiana.
Shortly after his conservatorship ended in August, he took his wife and daughter to dinner, a small luxury in this new phase of his life.
“I didn’t have to worry about my card being declined…and I bought my daughter a big piece of chocolate cake,” Clouse said. “It made me feel good, that I could just splurge a bit.”
Less restrictive alternatives
In 2019, Indiana joined a handful of other states — including Delaware, Ohio, Texas and Wisconsin — in passing laws requiring judges to consider less restrictive alternatives to conservatories.
Supported decision-making is one such alternative. Adults in these arrangements consult with a support team – which may include friends, relatives, social workers, case managers or paid support members – about major decisions. But unlike a guardianship, the individual can make the final decision.
“A lot of us … make important decisions by other people in our lives that are important to us — family, friends,” Dinerstein said. “(Then) you decide whether or not to listen to advice.”
The year before the new law was passed, Jamie Beck became the first person in Indiana to move from statutory guardianship to a supported decision-making arrangement. This happened as part of a pilot program exploring less restrictive guardianship alternatives.
Beck has a mild intellectual and developmental disability and was placed in guardianship at age 19 after her parents died. She spent a year in a nursing home where, she says, she was bored and spent her time learning American Sign Language. Beck remained in guardianship for eight years, even after she demonstrated that she could live independently and support herself financially.
“She was doing tremendously … and everyone felt she no longer needed conservatorship,” said Judge Greg Horn, who ended Beck’s conservatorship. “It wasn’t like we were going to send her on her way and let her struggle with life’s challenges.”
To ensure she would be supported after the conservatorship, the court worked with Beck to find a group of counselors she trusted to help her make decisions.
Beck said the supported decision-making agreement gives her more say in her life. She is now 31 and lives in an apartment in Muncie, Indiana. She works as a cleaner in a hospital and spends her free time playing Pokémon Go.
“I can do more things like a normal person would,” Beck said. She can seek medical attention and travel out of town without needing anyone to approve those decisions.
At least 11 states and Washington, DC have passed supported decision-making laws.
This story is part of a partnership that includes Side Effects Public Media, NPR and KHN.