Identity

The Horror of an Unwanted Conservatorship, According to People Who Lived It

“I tried to reach for my phone to call 911, but they tackled me, carried me to the car, and took me to a group home for people with disabilities.”
July 8, 2021, 11:00am
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A series in which people across the U.S. offer firsthand perspectives about how social issues impact their real lives.

As the world watches Britney Spears fight for control of her life, many people are learning about conservatorships, which are also called guardianships in many states, for the first time. 

Conservatorships and guardianships are legal arrangements in which people with disabilities and/or mental illnesses are deemed incapable of making decisions for themselves, and so another person (their conservator or guardian) is appointed by the state to look after and make choices for them. Often, someone is placed under guardianship or conservatorship because they have a disability, mental illness, or other neurodivergence that a guardian or conservator can argue limits their capacity to take care of themselves.

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Guardianships look different for every person. Some people are given public guardians they don’t know, especially if they don’t have family or if the courts deem their family unsuitable to be their guardian. Some guardianships are enacted over elderly people—especially those with Alzheimer’s disease or dementia—and may enable elder abuse in some cases. 

In the most restrictive cases, which are sometimes referred to as plenary guardianships, a guardian or conservator is given full control of a person’s entire life: They can choose where the person under guardianship lives, what kind of birth control they use, how much money they can spend, and even whether or not they can vote. 

Even so, some people are put under guardianship as an honest attempt to help them, particularly when the state doesn’t have or communicate less restrictive options. This lack of more informed and autonomy-preserving care is changing in some states, which have adopted alternatives to guardianship including supported decision-making (SDM), a much less restrictive alternative to guardianship and conservatorship in which people are able to choose their own advisors to help them make choices for themselves.

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In Spears’ case, her family members allege that she has mental illnesses that merit stripping her of her rights. She has been under her father’s control for the past 13 years, with no decision-making power over her health, her finances, or her communication with the outside world. On June 23, Spears gave a statement in court alleging she’s been the victim of an overly aggressive conservatorship. While Spears made clear she wanted her conservatorship dissolved, a judge denied her request to have her father removed as a conservator on June 30. While Spears still has recourse, her situation illustrates that the process of dissolving acrimonious conservatorships can be painfully difficult and complex.

Conservatorships don’t usually affect rich and famous people, but are more often used to disenfranchise and strip rights away from people with disabilities all across the country. VICE spoke to three young people who have successfully dissolved their guardianships about what life was like under guardianship and about the other legal options disabled people have—or should have—to maintain their rights and autonomy. 

Interviews have been lightly edited for length and clarity. Some names have been changed for reasons of privacy.


Bella*, 30, Columbus, Ohio

My story of guardianship is a little different than most people’s because I didn’t know I was under guardianship and it all happened while I was a minor. My mom was receiving monthly Social Security survivor benefit checks and initiated guardianship proceedings so that her attorney could control the inheritance money that was supposed to go towards my care and future endeavors. I was 15 at the time, and, despite filings with the court indicating I had agreed to the guardianship, I had no understanding of the guardianship until years later. I found out about my guardianship by accident after I graduated college: I’d left my husband and was checking court records to see if he had filed for divorce when I found records of the guardianship my mom initiated over me and my brother. I also found my guardianship had been dissolved around my eighteenth birthday.

I did not know my guardian at all. She was my mom’s attorney, and she still handles my mom’s finances. Since I was completely unaware that I was under guardianship for three years, I had no real idea of what my guardian did at that time. I’m still trying to figure out what she and my mom did with my finances—my mom was receiving Social Security money for my care, food, and clothes, but she was making plenty of money on her own. My understanding is that the benefits were to be saved for me to spend on college or other future endeavors. 

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My mom has always been an extremely controlling person, and money is her favorite tool of control. My mom was able to work with the guardian she had appointed to me to hide assets from me in several different banks and use the system to keep me from being able to obtain independence. It’s an uphill battle: Even if I can prove I’m not currently under guardianship, sometimes banks refuse to provide information to me because, technically, my mom or my ex-guardian opened the account. To this day, it’s very difficult to convince banks to let me access my own records so I can know what I supposedly have and where it is, because it’s been hidden from me for years. 

I’ve been my own guardian for 12 years now, but I’m still dealing with the fallout of my guardianship and trying to unravel the mess that was created to hide assets from me. When I was in law school, I nearly had to drop out because my mom decided to cut off my access to my accounts and the bank told me that, at 22 years old, I didn't have the right to access the accounts in my name without her permission, since they were created while I was under a guardianship. 

To prove that I am legally allowed to access my money, I generally provide banks with a screenshot of the case docket, but I have to know what I am looking for to be able to find it—like what name an account is under, or even what account I’m looking for. (In fact, I wouldn’t know my rights or what to look for if I wasn’t trained as an attorney.) Last year, my mom finally closed out one custodial account—a bank account usually set up for the benefit of a minor—for me that she’d set up during my guardianship, but it didn’t have nearly enough money to cover the benefits I was supposed to have received, so the rest is out there somewhere. I likely won’t find it all until she passes, but even then I might not, since my ex-guardian also wrote my mom’s will. It sucks to know I should be able to pay off my student loans, but I can’t because of something my mom did when I was a kid.

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Still, I was one of the very lucky few whose conservatorship as a minor ended when I reached the age of majority—some guardianships continue into people’s adulthoods, and they have to prove they’re competent enough to be released. Again, because I wasn't aware of the existence of my guardianship, I wasn't a part of ending it. When I initially found the records, I was worried that I was still currently under guardianship and just didn't know about it. 

I now work as an attorney at a nonprofit to help disabled people under guardianship understand their rights. I know so many parents of young people with disabilities are told that guardianship is the only way they can “protect their child,” but I’m incredibly passionate about showing parents the other side: the ways that guardianship permanently harms the ward, the way people’s voices are silenced in the process, and the politics of control that perpetuate the system. Living in the world as a disabled person who is neurodivergent and mentally ill is hard enough, but when the system benefits from having parents and/or other family members who would rather do away with their child's civil rights than allow their child individuality and independence, it creates a system of constant dehumanization.

*Name has been changed

Michael Lincoln-McCreight, 26, Port St. Lucie, Florida

Photo of Michael Lincoln-McCreight

Photo by Michael Lincoln-McCreight

It was a complete nightmare being put under guardianship when I aged out of foster care in 2014. I actually didn’t know I was being petitioned for guardianship until I was assigned an attorney by the court whom I felt didn’t advocate for me.

At the time, I had a guardian in the foster care system. As I aged out at 18, a professional guardian had doctors come to my home. The doctors said, "Hey, we're just doing a psych eval on you. It's nothing big." Then, a medical doctor who also didn’t reveal why they were evaluating me was sent to my house by the professional guardian. Once an attorney became involved, I knew something wasn’t right.

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I eventually found out that my financial guardian petitioned the court to have me in full guardianship, which she would be paid by the state for. Before, the guardian was only in charge of my finances, but full guardianship is much more restrictive. Once I was under full guardianship, I would have basically no rights. The judge didn’t care to hear what I had to say before finding me “incapacitated” because I have a developmental disability, signing the paperwork, and being done with it. 

One court date, and the decision was made. My full rights were taken away: the right to vote, the right to get married, the right to choose where I wanted to live, the right to choose my socialized environment. Everything that a normal human being has was taken. That is what it’s like under a full guardianship. 

I was given a public guardian whom I didn’t know. She controlled all of my money—every single penny. If I got a paycheck, she had me deposit it into a bank account I had no access to and ask her permission to use it. She chose where I lived. One morning, someone came banging on my door under the guise of giving me my daily medication. After they gave me my medicine, they told me I was moving that same day. They told me if I didn’t cooperate, I would be restrained. I tried to reach for my phone to call 911, but they tackled me to the ground, restrained me, and carried me to the car to take me to a group home for people with disabilities.

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From then on, I was held hostage from my family and my friends. I was not able to go to church. I was not able to do any volunteer work at all. I was a complete inmate. My guardian told me that if I called 911, that I would lose all phone privileges. They made me clean feces off the mattresses. They made me help restrain other people. I called adult protective services, who came, but didn’t believe my story. 

After two years living at the group home, I was able to buy a cell phone through pretending to be cooperative with my guardian and the home—I acted like I didn’t want to leave, even though of course I did. 

My friend (who didn’t live in the group home with me) and I called Disability Rights Florida, an organization dedicated to protecting disabled people. My lawyer, Amanda, fought for me, and I became the first person in Florida under supported decision-making (SDM). Supported decision-making is the least restrictive alternative to full guardianship: You're the decision-maker for your own life, but with support. If you don't want any advice from your support team (a group of people of your choosing), you can make decisions on your own, but they are there to help. You can reach out to your support for anything, whether you need help deciding if you should sign a certain lease, or if you need help deciding if you should get a Park Hopper ticket to Disney World. 

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I live in a house now. I cook, I clean, and go to work. I'm actually a state-licensed security officer. I work at a gated community where I do patrols and I respond to medical calls, noise complaints, etc. I have my driver’s license and can drive where I want. I check in with my support team (who I chose) about any big or small decisions when I need help, but, ultimately, I’m in charge of my own life.

Right now, I’m working on a bill for people with disabilities about supported decision-making as the co-chair of SDM4FL, a coalition working to pass the law. It's a bill that's in legislative right now to require judges to look at least restrictive options, like supported decision-making, before putting anyone under a guardianship. If passed, this law should be able to open more doors to people with disabilities to actually look at what works for them, instead of just being thrown in guardianships and having their whole lives ruined.

Cory Carlotto, 30, Pittsfield, Massachusetts (with support from his mother, Malia Carlotto)

In this scenario, Malia put Cory under guardianship without malicious intent. In Massachusetts at the time (and to this day in many states), there are no other options for parents to support developmentally disabled adult children apart from guardianship, or the alternatives aren’t presented upfront. Cory and Malia now work to educate others about supported decision-making.

Cory: When I was 18, I was put under guardianship by my mother, Malia.

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Malia: I looked into every possible option to protect Cory while he continued maturing, since he was about five years behind developmentally, but found that the only thing that was open to me was guardianship. His father and I knew that Cory wasn't going to need us forever. He might need us to help him understand some things, but he wasn't going to need us to make all his decisions. So I made sure that we would be able to reverse that guardianship at some point in time. 

Cory: We had to go to court, and it felt like it took forever with the psychiatrists and doctors and lawyers. 

Malia: The worst part was that we had to advertise in the local newspaper that we felt he wasn't competent. It still makes me cry that we are forced to do that as a part of guardianship, because we never believed Cory wasn't competent, he just needed some time—but that was the law.

Cory: Honestly, being under guardianship didn’t look different than any other day until my mom sent me to the hospital without my permission. I had some really bad anxiety back in 2012 and I had major meltdowns because of it, so I was in the hospital for two weeks. I couldn't use my phone or my iPod Touch or anything when I was there. I had to read magazines in my room, basically, and that was really boring. I couldn't go out and do anything. They even took my shoes. When I got out, I told my mom it wasn’t fair that she didn’t ask me if I wanted to go to the hospital. That’s when we started working to end the guardianship. 

Malia: We knew that no one had ever ended a guardianship in favor of SDM in Massachusetts before, so we knew that this was going to be a big deal. It was going to be a big deal for the Department of Developmental Services. We're just trying to educate people that there's something else out there. We go and we talk about what it was like, what we had to do, what I felt. I wish that supported decision-making had been available before, because that's really what Cory needed—someone who could help him understand. We’re still working on ensuring supported decision-making is the first step, not the last-ditch effort. The court should require that you try supported decision-making first and prove that it’s not viable before they grant guardianship. They made us jump through hoops for guardianship. They're so worried about taking his rights away, yet they don't know that there's something else that can be done that doesn't include taking them away—it just includes supporting them.

Cory: The first thing I did when we dissolved the guardianship and started SDM was decide to live on my own, which I couldn’t do under guardianship. I lived in a community house that was a bunch of different apartments, but it had a rec room. It didn't work out because there was so much drama over there, so I moved back with my parents for a year while I was working at a local store. Eventually, I found another apartment without a roommate, but once COVID hit, I talked to my parents and made a decision together to move back home again. I’m getting ready to move again into a new place. 

When we started SDM, I was also excited about traveling. I got to go to California and go to Universal Studios, which was my first long trip on a plane. I went to Tennessee after that, as well. My next goal is to get my driver’s permit, which I hope to do by the end of summer. Now, I get to make my own decisions. 

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