New legislation aims to provide more rights to people with disabilities who are in conservatorships.
SACRAMENTO, Calif. — “I was totally trapped,” said Marie Bergum. From age 21 to 36, Marie was conserved by her parents.
“I acted like I was happy…but I wasn’t,” said Marie.
We wanted to hear about her experience of what being under a conservatorship was like. She said her father, as conservator, was controlling.
“It was kind of sad,” said Marie. “He saw me as a ‘disability daughter.’”
She said, as an adult, she wanted freedom. Instead, she had to get permission for things like leaving the house or seeing friends because she was conserved.
“It made me uncomfortable,” said Marie.
Because of a brain injury, Marie has a developmental disability, according to court documents. She requires “adult guidance” in making many decisions.
That is why her father and stepmother believed being under their conservatorships was in Marie’s best interest – so they could protect and assist her, court documents show.
We reached out to Marie’s father. While he expressed wanting what was best for Marie as the reason behind the conservatorship, he declined our request for an on-camera interview.
Marie said more and more restrictions under the conservatorship added to her frustration. Under the conservatorship, she said she couldn’t have a job or be responsible for her finances, cook, or ride the bus alone.
So, she decided to take life into her own hands.
“I had to do some research,” said Marie.
She found something called a “self-advocacy group” and began trying to reach out. She made calls in her room discreetly.
“I was really scared because I was doing it walking around at my stepmoms,” said Marie. “Walking around trying not to get caught.”
Eventually, Marie got in touch with Suzanne Bennett Francisco, an advocate and disability expert who has become well-versed with those dealing with conservatorships.
“A lot of those cases come to me. Most attorneys won’t take the cases,” said Francisco. “They consider it a conflict of interest because they also set people up in conservatorships.”
Francisco said she and others began helping Marie navigate California’s complex conservatorship system, including helping her request an investigation from the court.
“(They helped me) step-by-step, what to do,” said Marie.
With assistance, Marie was able to launch several actions for her conservatorship case, including the regional center writing an assessment.
Regional Centers are state-funded facilities under the Department of Developmental Services. In limited conservatorships – or conservatorships for those with disabilities – a regional center service coordinator must write an “assessment” or evaluation of the person being conserved. This assessment is submitted to the court for the judge to review before appointing a conservatorship.
But Marie had never had an assessment prior to her conservatorship because she was placed under a general conservatorship. General conservatorships are more restricting, stripping someone of all civil rights – unlike limited ones which have seven specific powers that can be taken away and given to the individual acting as conservator.
In getting an assessment done for Marie, it revealed she should have more of her rights than she did.
“That assessment did recommend she have some of her rights – and if she had certain supports then she could have some of those rights back,” said Francisco. “Because she was under a general conservatorship where all of her rights were taken.”
Those with disabilities being placed under a general conservatorship is a problem that happens often – something we’ve uncovered in previous episodes of this investigation.
The regional center assessment motivated Marie, even more, to get out of her conservatorship.
“I felt like it just makes me cut myself down,” said Marie. “It cuts me down to make me feel like I’m low functioning.”
But the process to get out and terminate the conservatorship proved extremely difficult.
“So, a public defender was assigned. The public defender spoke to the conservator – Marie’s father – and wasn’t speaking to Marie,” said Francisco. “The judge never heard her voice.”
As Marie navigated this complicated and flawed system, she added more and more people she trusted to her “team.” This was one of the first times she experienced supported decision-making.
“Supported decision making is what we do every day actually,” said Francisco. “If we need help or if there’s something we feel like we need more information about, then we go to trusted, chosen people.”
For example, think of a car mechanic or doctor; both experts who explain complicated processes to their clients to help them make decisions.
“They get information that they need and they’re seen as wise. People with disabilities, when they ask for help – they’re seen as weak,” said Francisco. “So this is just offering people with disabilities the same choice – to choose people they trust, family members, friends, professionals, to help them make choices where and how they want and need support.”
Francisco said supported decision-making is a shift in our culture to empower people with disabilities. And we’re seeing this shift for the first time in California legislation.
AB 1663 is a conservatorship reform bill proposed by California Assemblymember Brian Maienschein.
“At heart, this is really a human rights bill. What it’s going to do is it’s going to put a concept called 'supported decision-making' into law,” said Maienschein. “This will be the first time this will ever be written into law. It’s really groundbreaking – and it changes the whole dynamic when it comes to conservatorships.”
But the bill is also in part thanks to the Free Britney movement.
“We think it makes sense,” said Matthew Rosengart, Britney Spears’ attorney during a rally in front of the Stanley Mosk Los Angeles Courthouse. “We support it. We’re glad Britney shined a light on some of the problems systemically.”
“The main organizers of the Free Britney movement have been incredible civil rights leaders throughout this whole process,” said Judy Marks.
Marks is the President of Disability Voices United, a statewide organization directed by people with disabilities and their family members. The Free Britney movement brought Marks and other advocates to rallies when Spears was still under conservatorship.
“And put us out front to say, ‘This has got to change. The entire conservatorship system has got to change and Britney is just one example,’” said Marks.
Marks and the Free Britney movement have worked with Assemblymember Maienschein to help create and get AB 1663 through the many steps of making it law.
“We call this the last civil rights movement,” said Marks. “Because you’d never say a person should have all their rights taken away because of their race, because of the language they speak, because of their gender. But now we’re seeing people can have all their rights taken away just because they have a disability.”
AB 1663 aims to change California’s conservatorship system in four main ways. In addition to supported decision-making, the bill would require California probate courts to prove conservatorship is truly the last resort.
“The bottom line for AB 1663 is that it makes it harder to get into conservatorships and easier to get out of them,” said Marks.
Right now, experts say other options are not being considered.
“Across the nation, conservatorship is supposed to be the last most restrictive option,” said Francisco. “If parents are given one choice, one option, how is that a choice? Because a choice has at least two options.”
The bill aims at making conservatorships easier to terminate.
“The individual will know there may come a time when it is no longer necessary, and they have the right to ask to have their conservatorship removed,” said Maienschein. “It will also make sure a hearing is required at that time on the request of the conservatee.”
AB 1663 also would try to ensure the person's conserved desires are upheld.
“A judge will have to make sure the individual has been advised of their rights,” said Maienschein.
Since being introduced in January 2022, AB 1663 has moved through the complicated process of becoming law.
“[ABC10’s] investigation’s timing could not have been better for getting AB 1663 passed,” credited Marks. “Your investigation delved into limited conservatorships, you found they were anything but limited.”
At our time of reporting, AB 1663 was sitting on Governor Newsom’s desk. If passed, it will go into effect on January 1, 2023.
“Our bill, AB 1663, will definitely hold DDS (Department of Development Services) more accountable for the 413 people they conserve,” said Marks. “But overall, it means that between your investigation and AB 1663 it means people are watching. People are saying to DDS, ‘Why are you conserving these people?’”
Marks said ABC10’s investigation, The Price of Care: Taken by the State, has already held DDS more accountable because just two days before episode one aired, DDS announced steps they’re taking to reform their conservatorship system, such as creating a panel to review the 413 people DDS acts as conservator to.
“That was all prompted by your investigation,” said Marks. “But these efforts have just begun because they’re being done in private and advocates like myself who’ve been working on this issue for years were not invited to be involved. So, we hope there’s some light that’s going to be shined on these conservatorships and these investigations soon.”
The California State Auditor has also released a number of audits into the Department of Developmental Services – including one in June 2022. In this audit, they said several times that DDS is aware of flaws in their system as past audits have pointed this out – yet DDS has failed to make changes.
That’s why people like the Schutte family, who we introduced in episode one, are not sold on DDS’ new promises or AB 1663.
“Organizations that are supposed to be monitoring, managing, and making sure people do the proper things – and following the current laws – frankly, no one cares. No one is doing those things,” said Russell Schutte. “So, I’m excited there’s a new assembly bill moving forward, but if current laws aren’t working – I don’t expect that to either.”
Meanwhile, the impact of a broken system and laws not being followed will continue to cause harm – like it already has to people like Marie.
“When you conserve someone, you’re basically signing a piece of paper… and saying goodbye,” said Marie.
After a lengthy legal battle to get out of her general conservatorship, Marie was placed under a limited one, court documents show…the type of conservatorship she should’ve been under initially.
Marie and Francisco said the limited conservatorship was not less restrictive in any way.
“Nothing changed. It was just called limited,” said Francisco. “So, it was very hard, and she went back and she had another court hearing. We just kept at it.”
They continued to fight – and while they could not get Marie out of her conservatorship, they came to an agreement: Marie could choose new conservators.
“They had to be approved by me,” said Marie. “And my supportive team.”
Marie chose her aunt as well as an advocate that was close to her.
The court agreed Marie must remain under this conservatorship with new conservators for a year, then could re-apply to terminate it.
It’s the only conservatorship Francisco has seen in all her years that has gotten this close to being terminated.
“Man, we’re going to have a party,” Marie said when asked about what she planned on doing if and when the conservatorship was officially terminated.
Throughout two years of investigating California’s conservatorship system, we’ve spoken with experts, and system insiders, and stood in empty homes, hearing the stories of those heartbroken having their loved ones taken from them - all because of a broken system.
Broken on multiple levels – but especially at the top; the state agency in charge of ensuring people with disabilities receive fair treatment and have equal rights – California’s Department of Developmental Services (DDS).
So, we’ll end this investigation where we began, with the Schutte family, and their message for DDS.
“Clearly the system is broken,” said Russell. “And parts of this system can be fixed here and now. (It) doesn’t require additional law, they just require people to do the right thing. Please do so.”