Guardianships, which are known in some states as conservatorships, can strip someone of control over their finances, their personal decisions, or both. Under some arrangements, people can lose their right to marry, vote, have children or get a job. An estimated 1.3 million people live under guardianships, according to a 2018 estimate from the National Council on Disability.
The arrangements are intended to protect people who are incapable of making their own decisions from exploitation and abuse. But advocates for people with disabilities say that guardianships are used too frequently and often are difficult to rescind, as highlighted by Spears’ long fight in 2021 to end her conservatorship, which she called “demoralizing” and “abusive.”
Numerous reports of people who have been abused under similar arrangements have emerged in the wake of the #FreeBritney movement. The American Bar Association, the American Civil Liberties Union and the National Council on Disability have called for increased data and transparency about guardianship practices and better safeguards against abuse.
“It is clear we need guardrails to protect the rights of people in protective arrangements,” Casey said.
Finding a less restrictive alternative
The legislation, called the Guardianship Bill of Rights Act, establishes that anyone being considered for a guardianship or who is already in a similar arrangement, has the right to try less restrictive alternatives. It also recognizes thejr right to have significant participation in decisions about their life or have a lawyer represent their wishes. It calls for timely reviews of the arrangement, and establishes a bill of rights for people in guardianships.
One alternative to a guardianship is called “supported decision-making,” where people can select trusted advisers to help them with their decisions.
“This should be the default option,” said Karrie Shogren, director of the Kansas University Center on Developmental Disabilities. Shogren has found when people with disabilities are given more self determination, they are more likely to be employed and participate in their communities.
Linda F. Warren, 61, of Tyler, Tex., thinks she never should have been put into a guardianship. Decades ago she was diagnosed with paranoid schizophrenia, depression and anxiety, but went on medication and raised four children. But in 2018, her doctor retired and she ran out of medication, leading to mental health episodes that led to altercations with police.
Warren, whose account was confirmed by her lawyer, was given a plea deal where she could choose jail or accept a guardianship where she would be put into a secure facility. She ended up confined in a nursing home that was far from her family.
“I felt locked,” she said. “I felt like my world had literally ended.”
With the help of a lawyer at Disability Rights Texas, an advocacy organization, Warren was eventually able to get out of her guardianship in 2021, but believes that her rights should never have been taken away in the first place.
“They’re taking away our civil rights,” she said. “People under guardianship should have the chance to have their own rights.”
How quickly people can lose their rights
Jonathan Martinis, a lawyer who has been involved in guardianship cases across the country, said that if Sen. Casey’s bill becomes law, it will make a significant difference in reducing the number of people put under guardianships.
Currently, someone can file for an emergency guardianship over a person, which, if granted, goes into effect immediately. Martinis refers to these as “ghost guardianships” because of how quickly people lose their rights. Under these temporary, emergency guardianships, many people lose the ability to hire an independent attorney to represent them at their permanent guardianship hearing. That would change under the proposed law, he said.
“You would have the right to say, I shouldn’t have a guardian. You’d have the right to contest the guardianship in the first place,” Martinis said.
The legislation would also provide funding to state agencies to investigate allegations of abuse, and create a council to collect data on guardianship practices and make recommendations for how to prevent or end unnecessary guardianships.
Some state laws have already taken effect
Some states have already begun to retool the guardianship system. At least 14 states have passed statutes that recognize supported decision-making as an alternative to guardianships.
In Texas, legislators passed a “bill of rights” as part of a 2015 effort to retool guardianships, according to Jeff Miller, a policy specialist with Disability Rights Texas,
According to a 2022 Texas Legislature report, the state experienced a 26% reduction in new guardianship appointments from 2014 to 2021 as a result of these reforms.
But there are still significant roadblocks to getting out of an existing guardianship, Miller said. He explained that court appointed attorneys in guardianship cases often try to work in what they think their clients best interests are, which can be based on stigma or assumptions about people with intellectual disabilities, rather than what their client actually wants.
The challenges of ending guardianships
Ryan King, 40, of the District, spent nearly a decade trying to end his guardianship. King has cerebral palsy, sickle cell disease, a spatial relationship deficit and an intellectual disability and his parents said they placed him under a guardianship in 2003 after being advised to do so by social services.
Both he and his parents fought to rescind the guardianship when they realized that it was not appropriate for him, but his court-appointed attorney argued against them.
Since ending his guardianship, King has been a longtime advocate for supported decision-making and plans to speak in favor of the bill. He believes that the bill comes as a result of people finally listening to his story and the stories of so many others like him.
“I feel proud about that because words have power,” he said. “I changed a whole lot of people’s lives by telling my story.”
Marian Kornicki, 74, of Roslyn Heights, N.Y., said her family’s experience with a guardianship was so bad that she wants to see them end entirely.
Kornicki said she was misled by an estate lawyer into filing for a guardianship in 2006 over her mother, who had Alzhiemer’s at the time. She became her mother’s personal guardian to help with day-to-day tasks, but said the court appointed separate people to be in charge of her mother’s finances and estate. Under this arrangement, she said court-appointed guardians, who were strangers to them, misused her mother’s money.
Because of this, Kornicki founded a coalition that advocates for an end to guardianships called Victims and Families Harmed by Guardianship. She remains skeptical that an attempted restructuring on the guardianship system would be implemented effectively.
“If you look at the law, it sounds reasonable and rational, but what happens is state supreme courts and probate courts do whatever they want,” she said.
But some, such as Amy Peckinpaugh, 52, of Redford, Mich., believe that guardianships can be necessary in a limited situations. Peckinpaugh filed for guardianship over her sister, Linda VanWormer, after state social services warned her that her sister was in an abusive relationship.
Peckinpaugh said she only used the guardianship to prevent her sister, who has an intellectual disability, from having further contact with the abuser. After 10 years, she and her sister let the guardianship expire in 2021 because they realized they didn’t need it anymore.
But in 2022, a state social worker petitioned for VanWormer to be placed back into a guardianship. VanWormer then had to fight both her court appointed attorney and the judge assigned to her case for months to stay out of a guardianship.
“The judge came around to be supportive,” Peckinpaugh said. “But in his decades being on the bench, he said he’d only restored rights to two people, which was kind of terrifying.”
In her purse, VanWormer now carries around a copy of the judge’s decision.
“It feels so good to be free,” she said. “I finally get to make my decisions with support from my family.”