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 revisions.
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 Alzheimer’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.”
Amanda Morris is a disability reporter for The Washington Post on its Well+Being desk. Before joining The Post in 2022, she was the inaugural disability reporting fellow for the New York Times.