Legal oversight arrangements are seen as protection for some, but advocates for people with disabilities question the need for them in many cases.
For nearly 13 years, Ryan King was under a guardianship not unlike the legal conservatorship that controls Britney Spears’s life and finances.
Mr. King, who works at a Washington, D.C., grocery store, has cerebral palsy, sickle cell disease, a spatial relationship deficit and an intellectual disability. He also has held his job for years, manages his own money, loves sports and cooks dinner for his family three days a week.
Revelations about Ms. Spears’s wish to end the conservatorship that has bound her decision-making and finances since 2008 have drawn new attention to legal mechanisms known in many states as guardianships. These arrangements are intended to support people who are incapacitated and incapable of making decisions, and some families say guardianships have protected their loved ones, including relatives in comas or with severe disabilities.
“It is a safety net for those who are both susceptible to financial exploitation and other harm that could come to them,” said Sally Hurme, a board member for the National Guardianship Association, which represents guardians.
But advocates for people with disabilities say guardianships have been used too broadly, including in cases of individuals with psychiatric disorders and developmental or intellectual disabilities who, the advocates say, do not require such intense or continuous oversight.
“I should have never been under guardianship, because I was always independent,” said Mr. King, 38. “Don’t judge me before you get to know me. Everyone needs help sometimes.”
Once a guardianship has been imposed, it can be difficult to undo. Mr. King’s parents, who say they reluctantly sought a guardianship for him in 2003 after being urged to do so by social services workers, attempted to have a judge rescind it in 2007. They say they faced barriers for years, including opposition from a court-appointed lawyer for Mr. King in the case.
“Judges are used to putting people in guardianships; they’re not used to letting them out,” said Jonathan Martinis, a lawyer the family eventually hired. The guardianship was finally revoked in 2016.
In Ms. Spears’s conservatorship, under which her father and others have overseen her life for the past 13 years, much is in flux: A lawyer representing her asked on Tuesday to be allowed to step down, the latest party to resign from the arrangement after Ms. Spears called it abusive in a hearing last month.
About 1.3 million people live under guardianships in America, according to a 2018 estimate from the National Council on Disability. They include older Americans who can no longer manage their affairs, but also many younger people, including some with intellectual or developmental disabilities. Studies suggest that the number of people under such arrangements has more than tripled in the past three decades.
Guardianships are often permanent, and are often poorly understood, even by the people who are subject to them. Some states make a distinction between guardianship, with control over all aspects of a person’s life, and conservatorship, with control mainly of financial matters; either type of arrangement can involve a range of levels of control. Under some guardianships, people can lose the right to marry, vote, drive, or seek and retain employment.
Most states require guardianships to be reviewed annually, but critics said those reviews are often superficial and fall short in protecting those under guardianship.
Guardians are selected by the court, not by the person to be protected. In a majority of cases, family members are appointed to serve as guardians, according to Ms. Hurme.
Only 14 states require guardians to obtain some sort of credential for the role, with a majority requiring certification from a nonprofit organization called the Center for Guardianship Certification.
This certification requires guardians to pass a background check, complete up to 30 hours of training, pass an exam and renew their certification every two years, according to Angie Troutman, the center’s certification director, who said the center has certified about 15,000 guardians. A vast majority of them are well meaning, she said, and truly want to assist people in need.
According to many states’ laws, guardianships are meant to be last resorts after other options have failed. In practice, advocates for people with disabilities say, they are imposed without considering other options.
“It’s a really big deal,” Zoe Brennan-Krohn, a lawyer with the American Civil Liberties Union’s Disability Rights Program, said of imposing guardianship. “But in reality, judges don’t tend to look at it that way. Courts don’t tend to look at it with the care and the scrutiny that you would want.”
Ending a guardianship is extremely difficult in many places, experts said. The process can be expensive and time-consuming, and many people do not know where to begin — nor are they empowered to hire their own lawyer while under a guardianship, according to Morgan Whitlatch, legal director for the nonprofit Quality Trust for Individuals With Disabilities.
Experts say there are less restrictive arrangements that can be used instead of guardianship, including what is known as supported decision-making, in which individuals select trusted advisers to help them understand their decisions.
Some advocates view supported decision-making as a preferable option that protects civil rights while also allowing doctors, bankers and lawyers to accept the decisions of people with disabilities without fear of lawsuits or malpractice claims.
Other less restrictive alternatives to guardianship include a power of attorney, which authorize someone to make certain choices on a person’s behalf for a certain period of time. Another alternative is an advanced medical directive, in which a person lays out a plan for what they want to be done if they should become incapacitated in the future; these are commonly used to create medical treatment plans, and can be helpful for people who experience recurring psychiatric episodes.
A growing number of states have passed laws in recent years that expressly recognize or require supported decision-making as an alternative to guardianship when applicable. Twelve states and the District of Columbia now have such laws, and seven more states have recognized some aspect of supported decision-making.
Jenny Hatch, who is 37 and has Down syndrome, lived in a Virginia apartment with a friend, held a job at a thrift store and volunteered on political campaigns. Then she injured her back in a bike accident. While she was in the hospital, her mother and stepfather sought guardianship over her, which a Virginia court granted on a temporary basis.
Richard Ross, her stepfather, said the couple sought the guardianship because they had a difficult time convincing Ms. Hatch to get surgery she needed after the bike accident, and they grew concerned about what might happen in such situations in the future.
Under the guardianship, Ms. Hatch said, she was placed in a group home where she did not want to live and where she was not allowed to see her friends or work at her job. Ms. Hatch said her phone and computer were taken away.
Her stepfather said that the group home was supposed to be a temporary living situation.
Ms. Hatch said the guardianship did not make sense for her situation, so she fought in court to end it. She enlisted the help of lawyers including Mr. Martinis, who has worked on guardianship cases around the country.
Typically, judges rely on IQ tests, psychological evaluations or medical evaluations to determine whether a person should be placed under guardianship. Mr. Martinis argues that these tests are flawed measurements of capability.
In Ms. Hatch’s case, her IQ score falls below a benchmark for a significant intellectual disability, but Mr. Martinis said she can make decisions with the right support.
“The psychologist in Jenny’s case never said she couldn’t do things — she said Jenny would need assistance with legal decisions,” Mr. Martinis said.
After a year under guardianship, Ms. Hatch succeeded in having it replaced with a supported decision-making arrangement.
Ms. Hatch’s mother, Julia Ross, and her stepfather said they disagreed with the decision. “We no longer had any say about the welfare of our child,” Ms. Ross said.
She said she no longer has regular contact with her daughter.
Ms. Hatch now lives with her friends, speaks at disability advocacy conferences across the country, and has returned to her old job.
“My life is much happier,” she said. “There are other ways to support people without taking away their rights.”
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