Saturday, August 20, 2022

'I want to live at home' | The battle of a conservatorship funded by tax dollars

Garth Schutte, 40, is under a conservatorship. His family isn't allowed to know where he is or speak to him. What's funding this is your tax dollars.

SACRAMENTO, Calif — Garth Schutte, 40, has been taken by the state.

His mother, Jill, and older brothers, Ian and Russell, aren't allowed to speak to or see Garth. They don't know where he lives.

That's because Garth has been placed under a limited conservatorship.

In California, a conservatorship is a legal tool approved through the probate court which takes away the rights of someone who is unable to care for themselves and gives them to another person.

While general conservatorships strip someone of their civil rights entirely, limited conservatorships have seven separate powers that can be taken and given to another person depending on the conserved person’s unique needs and ability to handle certain aspects of their lives.

But Garth has not been conserved by just anyone; he is under the custody of a $12 billion state agency: The Department of Developmental Services (DDS).

DDS serves hundreds of thousands of Californians with disabilities and their families with services and support. The Schutte family shared their story with us in hopes it will shine a light for others who receive these services — especially those considering conservatorship.

“360,000 people could potentially be subject to this system,” said Ian.

360,000 is the number of people the Department of Developmental Services serves as of our interview. In 2023, that number is expected to increase to over 400,000.

“I want to help as many of those 360,000 people as I can because even it just happening to one person is awful,” said Ian.

“We never expected anything like this,” said Jill. “If I could’ve predicted this... we would’ve left the state of California.”

Credit: Jill Schutte
Garth Schutte, 40, smiles with his favorite stuffed animals in his room at his mother's house in Sacramento.

Garth has developmental disabilities; autism and obsessive-compulsive disorder, court and medical records show. For the first 39 years of his life, he relied on his mother to assist him with everyday things like showering, shaving and even using a catheter because of a diagnosis of catatonia.

“He was catheterized in the home and I was trained by three different medical staff,” said Jill. “Kaiser was providing all his medicine and his catheter, which was being mailed to the house. You can’t buy catheters — they’re prescription only.”

The catheter is part of how Garth’s conservatorship began.

In Aug. 2020, record-breaking heat hit Sacramento. Jill noticed Garth wasn't eating or drinking quite as much and took him to the doctor.

“Garth says things differently and he mentioned to one of the nurses, ‘My mom puts a red plastic straw in my private part,'" Jill said.

Hospital staff are mandatory reporters. By law they have to report any sign of potential abuse – Jill said Garth was trying to explain how he needed to be catheterized and it sent an abuse alert to Sacramento Adult Protective Services (APS) as well as Alta Regional Center — the state-run facility under DDS providing services and support directly to people with disabilities as well as their families.

“When we look at California state law regarding mandated reporters, the reporters only report suspicions. It’s the sheriff and police that do the investigation,” said Jill. “Adult Protective Services expand the investigation, not the regional center.”

Yet court records show Alta Regional Center took Garth and placed him in a state-funded care facility.

Jill, Ian and Russell were not notified, despite Jill having Kaiser’s model of power of attorney over Garth.

For three months, no one told their family where Garth was.

“We had absolutely no idea. They would not even say, is he in Sacramento?” Jill said. “We did not know.”

This wasn’t unfamiliar territory to the Schutte family.

Fifteen years prior, Garth had been taken by an Alta Regional Center employee who was helping watch Garth in Jill’s home. In court records, the regional center wrote Jill was unable to care for Garth, but a court investigator’s report later said Garth was taken in a “deceptive” manner.

The first time Garth was taken, it took Jill nine months and an attorney to get him back. 15 years later, in 2020, they were at a loss, which is why the Schutte family decided to get conservatorship over Garth, despite not doing so for Garth’s 39 years of life to help maintain his independence.

As they began the lengthy legal process, Garth was suddenly dropped off at Jill’s home by medical technicians after three months with no knowledge of his whereabouts.

“I was shocked. I was thrilled,” said Jill.

Less than 24 hours later, three Sacramento sheriff’s deputies arrived saying Garth had been returned to Jill due to a “clerical error.”

The deputies took Garth outside and spoke with him alone. Ian recorded all 47 minutes the deputies were there; throughout the recording, Garth expressed his desire to remain at home with his mother to the deputies several times.

After Garth made his wishes clear and the deputies did a home inspection, their concern vanished.

“We’re glad he’s got such a good home here,” a deputy said.

The deputies updated Adult Protective Services and Alta Regional Center on their welfare check. Before leaving, one deputy offered the Schutte’s advice: “The most important thing you can do is go get that conservatorship as quickly as you can because that’ll prevent them from pulling all this.”

The Schutte family took it to heart and moved forward with the legal conservatorship process.

By petitioning the probate court for conservatorship, several things are instigated, including the court appointing an attorney for the potential conserved person.

The court appointed attorney Dewey Harpainter to represent Garth. Harpainter’s office is in Auburn.

As Garth’s attorney, Harpainter is legally required to advocate and represent what Garth wants. Jill says Harpainter refused to meet in person with Garth.

“At one point I said, ‘If you’d like I can drive Garth up to Auburn. I will sit in the car so you can have private questioning with him,'” Jill said. “He denied that at least five times.”

When the Schutte family attorney brought this up in court and requested a new attorney be appointed for Garth, the judge refused, Jill said and court records show.

At the time of our interview with the Schutte family in early June 2022, Harpainter had yet to meet with Garth.

That changed less than a month later after we reached out for an interview. Court records show Harpainter eventually met in person with Garth after we began investigating. The meeting took place just six days after our initial interview request to Harpainter.

Harpainter did not respond to repeated requests for an interview.

When a conservatorship is requested – the court also appoints an investigator to interview the conservatee, assess the family dynamic, and write a report that goes directly to the judge.

“The court investigator called me and we talked over many, many things,” said Jill. “I (also) encouraged him to talk to Garth privately.”

After the investigator spoke with Garth in a one-on-one phone call, he wrote that Garth “expressed a very strong desire to remain at home” and told the investigator, “(I) don’t wanna go to a group home. I would like to live at home.”

Criminal background checks were done on Jill and Russell — who were petitioning for shared conservatorship custody. The investigator’s report also went through Adult Protective Services records and past abuse referrals, which “were deemed inconclusive.”

It means they didn’t have evidence to confirm or deny Garth was abused, APS told us.

The court investigator recommended to the judge that his family care for Garth, and the conservatorship “should be granted.”

But the state regional center, Alta, told the judge a different story — it claimed a number of allegations of abuse by the family from medical professionals in their written assessment of Garth.

Jill said she’s had years of experience with Garth — as well as a 22-year career as a disability expert for the California State of Rehabilitation —  and that, “at no time did any doctor or professional advise me that anything being done was abusive.”

The assessment also alleged Jill locked Garth in a windowless room, which Jill admits to, for Garth’s own protection. Because of his OCD, Garth often tries to break through the window glass in his room so he can pick up litter at all times of the day and night.

“I mentioned that to a doctor… the doctor said, ‘Can you put a plywood or something based on the size of the window?’” Jill recalled.

She did, but not before she said she consulted with the fire department about it.

“It’s always putting Garth first,” Jill said. “His needs and wants but above his needs and wants... his safety.”

The assessment also said Garth spoke directly to Roseville police after a lieutenant contacted Garth and the regional center following the Schutte's filing a missing persons report when Garth was taken in 2020. The assessment said Garth told the lieutenant he didn't want to return to his mother’s house as well as recounted “physical and sexual abuse by his mother and brother.”

We reached out to the Roseville Police Department. They said they have “no records” of the call and therefore couldn’t confirm it.

The regional center told the judge just because APS reports of abuse were “inconclusive,” it “does not mean the claims are unfounded” and that Jill and Russell would be inappropriate conservators.

Instead, they recommended the Department of Developmental Services be appointed as conservator. They also said DDS should ask for a power the family didn’t: control over who Garth sees.

Ultimately, the judge listened to the regional center. He gave temporary conservatorship of Garth to DDS... not to the family as recommended by the court investigator.

With the conservatorship appointed, DDS decided Garth should move out of his mother’s home and into one of their care facilities — what they call a “vendor.”

After 39 years of living with Garth, Jill moved Garth into the new facility.

“We did not want him to see our tears as we drove away,” Jill recalled.

But the DDS care home struggled with Garth.

“Because they couldn’t help him sleep and he couldn’t sleep - they call 911,” Jill said she learned.

Court records show Garth had been “hospitalized for 43 out of 88 days” after being moved to care homes and under the care of DDS, meaning between November 2021 and February 2022 Garth spent about half his time at that point in emergency rooms rather than the care home.

Because Garth is under the conservatorship of DDS, taxpayers are footing the pricey ambulance rides and hospital stays.

One of the caretakers had so much trouble she actually asked for help from the family Garth had just been taken away from.

“She would call (us asking), ‘Can we come help her?’” Jill said. “She actually wanted us to spend the night there.”

Jill shared text messages between her and the care home facilitator with us. Here are a few, including the facilitator addressing the regional center’s abuse allegations:

  • “Please help me tonight. I don’t want to call the hospital.”
  • “Ms. Jill please help me.”
  • “What would u do?”
  • “I didn’t see any abuse at all.”
  • “I believe u are a good family.”
  • “I really don’t know what they (regional center) are doing. Just help me transition (him).”
  • “He keeps writing I miss my mom.”

Garth no longer lives at this care home. Jill said he has moved residences five times in six months. With each move, Jill’s involvement in Garth’s life has been drastically cut by DDS, claiming Jill and Ian are “triggering” Garth. Jill believes what’s triggering is the memory of the home Garth had with her.

As of mid-July 2022, Jill hadn’t seen or spoken with Garth for 12 weeks. Visitation, including phone calls, between Garth and his family, has been severed... especially between Jill and Russel, the two who tried to get co-conservatorship.

“We have not been (to his care home). We are not allowed to go there. We are not allowed to know the exact address,” said Jill. “We have not seen him or heard from him.”

It’s not for a lack of trying; Jill has repeatedly requested visitation with Garth’s regional center service coordinator, who is acting as his conservator in making decisions for Garth on behalf of DDS.

“We can’t provide you a date when you will be able to call or visit Garth,” his service coordinator wrote in an email to Jill. She also said, “Garth has not expressed any interest in having contact with you at this time.”

Jill said she’ll respect his wishes, but wants to hear them from Garth himself.

“Because we will follow the instructions,” said Jill. “[The regional center] could not do that.”

We also reached out to Garth’s service coordinator asking to speak with Garth. Alta Regional Center’s legal manager responded with the same message: “Garth has expressed no interest in speaking with you.”

We asked if Garth was informed that an investigative reporter wanted to speak with him — and if we could ask him directly. We never got a response.

We were, however, able to speak with Garth directly during a visitation with his brother Russell.

Since DDS got conservatorship, Russell has laid low in hopes of continuing to remain in contact with Garth, unlike other family members who've lost all visitation. As of June 2022 he hadn't seen Garth for six months. Russell requested visitation and was approved. He, his wife Elizabeth, and their kids met at a local park while a care home worker supervised.

About halfway through their visit, we were able to speak with Garth.

“I terribly miss my mom,” Garth said.

When asked who he would like to live with, he told us “his family,” specifically his “mom.”

Garth also expressed the same desire weeks later directly to a judge.

On July 27, 2022, the Department of Developmental Services’ temporary conservatorship over Garth expired. The agency wanted to renew it and a court hearing was held in Sacramento’s probate court.

Judge Gevercer granted us permission to film, despite DDS’s repeated objections.

During the 40-minute hearing, the judge gave time for all to speak including Garth himself, who until this point has rarely had a voice in court.

“I want to live with my mom,” Garth said to the judge.

The judge told Garth to talk to his court-appointed attorney, Harpainter, about his desires. He also ordered DDS and the Schutte’s to meet and hopefully reach an agreement over Garth’s current situation.

In the meantime, he extended DDS’s conservatorship over Garth until the next hearing in December.

We requested an on-camera interview with the Department of Developmental Services for seven months. They declined all requests for interviews.

Prior to releasing our investigation, we sent them a three-page letter outlining our findings and asking 15 questions related to allegations of failed practices, including a 2022 state audit that found numerous failures for the last 10 years. 

They refused to answer our questions and sent us a written statement (available in full at the bottom of this article) about how their priority was to keep their clients safe and a short video (below) of Director Nancy Bergmann reading the written statement. Neither answered any of our questions.

So, we attempted to talk to DDS attorney Meredith Nixon following the hearing. She also refused saying, “no comment.”

Two days prior to our investigation airing, the Department of Developmental Services announced immediate "actions to support" the individuals they conserve in a three-page press release. The release named three items DDS will do to improve the system for those in "conservatorships where DDS is the court-appointed conservator." They include forming a panel of experts to conduct a review of DDS' conservatorship program, forming a "working group" from multiple state departments to review their conservatorships, and "enhance oversight and review."

However, the press release didn't include direct actions or steps, like budgeting nor an exact time frame of when these items will take place. We reached out again asking for an interview so we could ask about the specifics of their new plan. They declined.

Credit: Jill Schutte

Jill had retired to care and spend more time with Garth. Following the hearing, she decided to return to work at an organization assisting people with autism, like Garth, so she can continue paying for the costly legal fees in hopes of gaining care for Garth.

The Schutte family plans to continue fighting in hopes of getting Garth home. They also hope in sharing their story, they shed a light on limited conservatorships and the system around it for others - as well as taxpayers.

Department of Developmental Services statement:

“In California, unlike any other state in the nation, individuals with intellectual and developmental disabilities have a right to the services and supports to help them live their most independent and productive life. With the passage of the ground-breaking Lanterman Act in 1969, the state affirmed its commitment to these rights for Californians. We at the California Department of Developmental Services have the responsibility to deliver on the assurances made by the law. 

It is our obligation to hold ourselves and our system partners accountable, while ensuring that individuals with intellectual and developmental disabilities receive community-based services and supports that embraces choice and allows them to live with purpose and dignity. We are constantly looking to improve how we serve the whole person, all while protecting the health and well-being of those we serve.

We are striving to create effective, culturally responsive, and efficient services. We have advanced this vision by the historic investments made over the last two years that, when put together, drive us toward a system of value-based services and supports, where our main objective is quality and better outcomes.”

Department of Developmental Services response to our questions:

“DDS does not actively seek conservatorships. In all instances, the Department of Developmental Services’(DDS) involvement in the conservatorship process begins with a submission by a third party requesting that the Director of DDS become conservator of a person with developmental disabilities. DDS only decides to petition to become conservator when clear and convincing evidence shows that a conservatorship is needed to protect the consumer’s health, safety, or well-being. The submission can come from a variety of sources, such as the courts, a regional center, a law enforcement agency, a family member, the county public guardian, the consumer’s court-appointed counsel, local adult protective services, or any other person interested in the consumer’s health, safety, or well-being. The conservatorship process is a court-based, legal process. As such, DDS has the legal burden to present conclusive evidence to a judge demonstrating that the conservatorship is necessary to protect the person’s health, safety or well-being.

 Family members can and do participate in the judicial proceedings that decide whether a conservatorship petition should be granted, the scope of the conservatorship, and whether the Director of DDS should be appointed as conservator. Furthermore, a court-appointed counsel is part of this process. These are officers of the court appointed by a judge to represent the interests of the proposed conservatee. These counsels are completely independent of DDS and do not receive any funds from the Department. Court-appointed counsel have a fiduciary duty to act independently and in the best interest of the proposed conservatee to determine whether a conservatorship is necessary and who, if anyone, should serve as conservator. 

 DDS does not seek to become a person’s conservator without a third-party submission having first being made and thoroughly vetted. DDS conducts a comprehensive, detailed inquiry when it receives a conservatorship nomination. DDS will not seek to become conservator if there are alternate, less restrictive means to protect a consumer’s health, safety, or well-being. DDS also will not seek to become conservator if there is a family member, friend or other close person in the consumer’s life that can protect the consumer’s health, safety or well-being. DDS has a legal and moral obligation to protect the consumer no matter the desires or objections from family members.

 It is important to understand that under state law every regional center consumer participates in the development of an Individual Program Plan (IPP) that identifies the supports and services the person needs. An IPP is developed regardless of the legal status of individuals. The amount of funds spent on a consumer is based on costs for the supports and services identified in the IPP, and not on any other factor such as whether a conservatorship is in place. Thus, absolutely no additional funds are spent simply because a consumer is subject to a conservatorship by DDS. In addition, neither DDS nor the regional center receives any additional administrative funding for individuals who are conserved versus those who are not conserved.”

Editor's note: This article has been updated to correct that Russell was the Schutte brother that initially petitioned co-conservatorship of Garth.

Full Article & Source:

Friday, August 19, 2022

Wendy Williams had to be told several times her show had been canceled, execs say

Insiders reported multiple talks with the host in which she seemed to repeatedly forget that her show was canceled, amid other behind-the-scenes stories from the final season.

By Joey Nolfi

Wendy Williams didn't know that her long-running talk show had been canceled, despite repeated communication that her tenure at the head of the program had come to an end following a months-long back-and-forth over health issues, said executives behind The Wendy Williams Show.

In a new interview with The Hollywood Reporter, production distributor Debmar-Mercury co-presidents Ira Bernstein and Mort Marcus revealed that they had multiple conversations with Williams amid her unexpected and prolonged absence across the show's 13th season, and had to tell her several times that the show was ending despite having publicly announced its conclusion in February as a result of her leave.

"I said, 'We haven't heard from you, and we had to make a decision.' We should have made one in November, but we pushed it to January or February, and by then, it was like, 'Make a decision or lose the time period,'" Bernstein recounted, adding that Williams appeared to be confused about the show's cancellation following a revolving door of 16 guest hosts filling in for her on season 13. One of those hosts, former View panelist and actress Sherri Shepherd, would eventually inherit the vacant slot with her own talk show.

"She said, 'Well, what's going to air at 10 o'clock?' I told her, 'Sherri's going to air at 10 o'clock.' 'So, can I go on at 11?' I said, 'We'd love to work with you, and there are lots of ways and lots of buyers, but you need to come back, and we need to know that you're OK," he continued. "You can't just call after nine months and say, 'I'm ready.'"

The publication noted that "a version of this conversation would take place several more times over the next four months," including multiple phone calls with both co-presidents, as well as a sit-down lunch in Manhattan. "Each time," the outlet continued, "according to the pair, Williams appeared to be having the discussion for the first time."

The exchanges allegedly occurred after Williams' ongoing illnesses — including Graves' disease and lymphedema — resulted in a delay in launching season 12 of the show back in September 2021. She publicly expressed multiple times, including in a March interview with Good Morning America, that she was ready to return to the program, though a production source told EW at the time that it was too late for the 58-year-old to take the reins once again for the current or upcoming syndication season.

Wendy Williams Show
'The Wendy Williams Show' to end after 13 seasons.
| Credit: Debmar-Mercury

"[My] health is very well and I've actually had a few appointments. I'm 57 now, and I have the mind and body of a 25-year-old," Williams told GMA's T.J. Holmes at the time. "I'm very comfortable. My partners with the show, everybody's ready. Give me about three months. There are private things that I have to deal with and then I'll be ready to come back and be free and ready to do my thing."

Marcus added in the THR piece that eventually, they "said, 'Wendy, we need to have a diagnosis from a doctor — whether it's the TV stations or a network or a new producer, anyone who's going to do business with you, after you didn't show up for a year, needs to know that you're OK. [Without that assurance,] no one's going to risk money or finance things."

Other reports from the story include an anonymous insider who told the publication that a planned Zoom address to 50 program staffers in September had to be cut short after about three minutes, as they suggested she was "starting not to be coherent" during the talk. They also said staffers would "find bottles [of alcohol] up in the ceiling tiles and other weird places in the office." Two more sources alleged that staff members had sent texts questioning Williams' sobriety to higher-ups, who reportedly had to screen episodes of the show prior to air time to make sure the host was fit for air. One episode, in the spring of 2021, allegedly did not air after this process, and was replaced with a repeat.

Wendy Williams
Wendy Williams
| Credit: Michael Tran/FilmMagic

A source close to the events confirmed to EW that the retelling of the incidents are "all correct." EW has reached out to representatives for Debmar-Mercury for more information.

Williams' spokeswoman, Shawn Zanotti, did not immediately respond to EW's request for comment, though she did release an email statement to THR.

"It has been no secret that Wendy has battled with addiction over the years but at this time Wendy is on the road to recovery and healing herself from her chronic illnesses and her grievances of the past," Zanotti wrote. "What we do know is that Wendy has a history of chronic illness that she has publicly spoken about."

The Wendy Williams Show ultimately concluded on June 17, with Shepherd introducing a highlight reel of moments from the program's run.

"Most of all, we have to thank you, Wendy Williams," Shepherd said. "There is nobody like Wendy Williams. From her days on the radio to ruling daytime talk for 13 seasons, Wendy earned her title as the queen of all media. If you think about it, Wendy Williams changed daytime talk."

Full Article & Source:

Two Pennsylvania judges ordered to pay $200m to kids-for-cash scandal victims

Mark Ciavarella and Michael Conahan accepted $2.8m in illegal payments to send children to for-profit jails

Former judges Michael Conahan, front left, and Mark Ciavarella, front right, leave the US district courthouse in Scranton, Pennsylvania, in 2009. Photograph: Mark Moran/AP

Two Pennsylvania judges who orchestrated a scheme to send children to for-profit jails in exchange for kickbacks were ordered to pay more than $200m to hundreds who fell victim to their crimes.

US district judge Christopher Conner awarded $106m in compensatory damages and $100m in punitive damages to nearly 300 people in a long-running civil suit against the judges, writing the plaintiffs are “the tragic human casualties of a scandal of epic proportions”.

In what came to be known as the kids-for-cash scandal, Mark Ciavarella and another judge, Michael Conahan, shut down a county-run juvenile detention center and accepted $2.8m in illegal payments from the builder and co-owner of two for-profit lockups.

Ciavarella, who presided over juvenile court, pushed a zero-tolerance policy that guaranteed large numbers of children would be sent to PA Child Care and its sister facility, Western PA Child Care.

Ciavarella ordered children as young as eight to detention, many of them first-time offenders convicted of petty theft and other minor crimes. The judge often ordered youths he had found legally delinquent to be immediately shackled, handcuffed and taken away without giving them a chance to say goodbye to their families.

“Ciavarella and Conahan abandoned their oath and breached the public trust,” Conner wrote on Tuesday in his explanation of the judgment.

“Their cruel and despicable actions victimized a vulnerable population of young people, many of whom were suffering from emotional issues and mental health concerns.”

The Pennsylvania state supreme court threw out some 4,000 juvenile convictions after the scheme was uncovered.

Ciavarella is serving a 28-year prison sentence. Conahan, who was sentenced to more than 17 years in prison, was released to home confinement in 2020, with six years left on his sentence, because of the coronavirus pandemic.

It is not clear whether the plaintiffs, now well into adulthood, will see any of the substantial damages award.

Marsha Levick, co-founder and chief counsel of the Philadelphia-based Juvenile Law Center and a lawyer for the plaintiffs, said on Wednesday she “can’t imagine there is any money out there”.
Full Article & Source:

Tyler woman accused in bilking scheme gets probation, must pay restitution

TYLER, Texas (KLTV) - A Tyler woman under federal indictment for participating in a money laundering scheme will avoid jail time and must pay back more than $100,000.

In a plea deal before District Judge J. Campbell Barker at the federal courthouse in Tyler, Tracey Lynn Brookshier had one charge dismissed and for a second count was given 36 months probation, a waived fine and also was ordered to pay $138,265.80 in restitution.

Brookshier was arrested in 2020 after federal prosecutors said Brookshier, and at least five others indicted, would “target seniors here at home through believable scams designed to rob them of hard-earned savings”. Allegedly they formed call centers and contacted victims, some of whom were located in the Eastern District of Texas, directly targeting elder victims to transfer funds to the defendants and other co-conspirators. The indictment claims that they impersonated Social Security Administration and IRS/Department of Treasury officials. Brookshier was charged with a money laundering conspiracy and operation of an unlicensed money transmitting business.

Full Article & Source:

Thursday, August 18, 2022

The Price of Care: Taken By the State

Britney Spears' legal battle to regain her freedom put conservatorships in the spotlight, but this legal tool impacts thousands of Californians, especially those with disabilities.

Investigative reporter Andie Judson takes a look at limited conservatorships and the state agency failing the people it has promised to protect -- adults with developmental disabilities. And what is funding this? Your tax dollars.

Season two of "Price of Care: Taken by the State" is an ABC10 Originals five-part investigation. The first episode airs on Thursday, August 18 at 6 PM.

Watch the trailer for this series on Facebook

10 California State Bills That Never Saw the Light of Day This Year

Written by Sarah Wright, Kevin Truong

The Senate chamber during a session in the Capitol on January 19, 2021 in Sacramento, California. | Getty Images

Now that California’s legislative session is coming to an end, it’s time to comb through the remains.

In what is a twice-annual tradition for California lawmakers, hundreds of bills go through the Assembly or Senate Appropriations committees in what’s called the Suspense File process. 

Every bill with an estimated fiscal impact of $150,000 or greater is routed to the committees for approval. No public hearing is held on the votes, which are conducted behind closed doors. That means it’s impossible to tell who supported the legislation or why it was killed. 

At a subsequent public hearing, legislators run through the results in a rapid-fire style, with the respective chairs of the committees reading out the bill and announcing whether it moves forward or is held, effectively putting the legislation on ice for the session. 

We went through the roughly 200 bills that were killed this cycle to find 10 with major implications for San Francisco. Time will tell which bills will come back, and when. 


SB 602 Review of Conservatorships

Introduced by state Sen. John Laird, the bill would have impacted state policy around conservatorships and require conservators to file a care plan for a conservatee within 60 days of appointment and within 30 days before a hearing to determine the continuation or termination of an existing conservatorship. It would authorize the court to impose a civil penalty of up to $1,000 for the failure to submit a plan. 

Full Article & Source:

Opinion: Missouri gives options in powers of attorney for financial purposes

BY: Charli Steed

Charli Steed
To say that the COVID-19 pandemic changed many of our day-to-day activities and habits is an understatement. Estate planning and how we approach it has been no different. The COVID-19 pandemic has not only emphasized how unpredictable life can be, but also created personal uncertainty for many, causing both young and old to start thinking earlier about estate planning. 

The pandemic especially had an effect on Missouri’s most common type of power of attorney in estate plans – the durable power of attorney for financial purposes. More people are now executing these documents and making them effective immediately as opposed to upon the occurrence of a future event.

As the name implies, it’s a power of attorney that is durable, retaining its effectiveness even after the individual who executed the power of attorney, known as the principal, becomes incapacitated. This article specifically discusses two different forms of the durable power of attorney: 1) the “springing” durable power of attorney for financial purposes, which becomes effective upon a future event, such as one’s incapacity and 2) the “non-springing” durable power of attorney for financial purposes, which becomes effective immediately upon execution. Both allow an individual, commonly known as your “agent” or “attorney-in-fact,” the ability to manage your finances and business affairs when you are unable to. While they achieve the same end goal, they do so on different terms.

A springing durable power of attorney “springs” into effect upon the occurrence of a future event, which oftentimes is dictated in the document for that individual to be declared incapacitated by either one or two physicians. If such future event does not occur, then the power of attorney never becomes effective. Many people initially like the idea of springing durable powers of attorney because they are uncomfortable with making their power of attorney effective immediately, especially while they still have capacity and are able to manage their own affairs. However, the downsides to a springing power of attorney include delays in being able to use such power as soon as the need arises. As we know too well, doctors were even less accessible during the pandemic. As a direct result, an agent under a springing durable power of attorney would have to wait longer periods in order to obtain the necessary authorizations from physicians for a springing durable power of attorney to become effective.

A non-springing durable power of attorney, on the other hand, avoids the delays often associated with a “springing” durable power of attorney. Because it becomes effective immediately upon execution, this type of durable power of attorney certainly came in handy for many during the pandemic, perhaps assisting with the financial affairs of an elderly loved one or a child away at college. However, even though such powers of attorney can be extremely convenient, this type may seem daunting to some because it gives your agent the authority to act immediately upon you executing the power of attorney. A frequent concern of clients is that an agent may be tempted to commit fraud or otherwise abuse their authority. This concern is not unfounded. However, it is important to keep in mind that your agent is precisely that – your agent. Your agent owes you, the principal, a fiduciary obligation to exercise the powers conferred in the power of attorney in your best interests. If your agent breaches this duty, they can be held liable in court for such breach.

Both types of durable powers of attorney come with their own set of advantages and disadvantages. I learned early in my practice that no two estate plans are alike, so I strongly recommend consulting with professional legal counsel to advise in this area in order for you to make the best possible decision for your specific circumstance.

Regardless of the type of durable power of attorney for financial purposes you may choose, both types, and for that matter, all estate planning documents, must be executed by an individual who is of sound mind – meaning they must have requisite mental capacity to understand their actions. If you are assisting someone in executing a power of attorney and you are not entirely sure such individual meets the mental capacity requirement, for which the threshold is fairly low, you should consult not only with an estate planning lawyer but also a physician. 

Charli Steed is a senior associate in the tax, trusts and estates practice group at Spencer Fane LLP.
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Woman Who Fell for Romance Scam Loses Home, Taken Captive, Dies—Family

By Giulia Carbonaro

A 70-year-old woman from Coeur d'Alene in Idaho who had fallen for a romance scam was kidnapped by the men who had "catfished" her and has now died shortly after being able to return home, according to her family.

Diane Webb had been introduced to dating apps three years ago by her granddaughter, the family told Spokane, Washington, TV station KHQ-TV, thinking the woman might find a spouse after being single for 40 years.

Diane Webb, 70, turned away from her family and sold her home for a man who didn't exist after falling for a romance scam three years ago. Getty Images

The idea initially seemed to prove successful, as Webb fell in love with a man named Michael, whom she met on an unidentified dating app.

Michael—who the family now knows wasn't a real person, but a fake profile created to trick women looking for love and companionship—was said to be based in Nigeria, so for three years the two did not meet in person.

But in three years of talking, Webb's family told KHQ-TV that the man would often ask the woman for money, for a variety of reasons that are often brought up by romance scammers —which usually range from paying for health fees resulting from a sudden incident to asking for support to afford a plane ticket.

According to Webb's daughter Monica Grimm, Michael had often told Webb he would come visit in Idaho, but "on the day he was supposed to show up he would tell her 'I'm at the airport, but I don't have money to get to you. Could you just give me a little?' He was in Africa the whole time," the woman told KHQ-TV.

Eventually, Michael convinced Webb to distance herself from her family, telling her they didn't value her as much as he did. According to the woman's family, Webb turned her back on her relatives and even sold her home under the pressing requests of Michael.

Then in March this year, according to the family, Webb traveled to Nigeria to meet Michael, aiming to stay for three months. But instead, the woman was held captive by the same men who had catfished her, was physically and mentally abused and fed only potatoes and beer, until July.

Catfishing is when a fraudster creates a false personal profile online to trick someone.

On July 9, Spokane Airport security called Webb's family and told them that the woman was back home after one of her captors, whom she had befriended, bought her a ticket back to the U.S.

"He felt bad for my mom being 70 and as sick [as] she was. He told her I'm getting you a ticket and sending you back home," Webb's daughter Melinda Thomas told KHQ-TV.

But Webb's return home was no happy ending to a frightful story, as the woman has recently passed away due to malnutrition.

Newsweek has tried to contact the FBI for comment.

Though Webb's story is an extreme example of the consequences of romance scams on the lives of those who fall prey to them, thousands of people report cases of catfishing and dating scams every year.

According to the Federal Trade Commission, reports of romance fraud hit record highs in 2021, with median individual losses at $2,400.

Between 2017 and 2021, people have reported losing $1.3 billion in total to dating scams.

The FBI recommends the following tips to avoid being scammed while dating online:

- Research the person's photo and profile online to see if their details match elsewhere;

- Go slowly and ask lots of questions;

- Watch out for people asking immediately to take it off the dating app and use other means of communication;

- Beware of any attempt by the person to isolate you from friends and family, request inappropriate photos or your financial information;

- If the person always promises to meet in person but then never does, coming up with some excuse why they can't, that's a red flag you should take note of;

- Never send money to anyone you have not met in real life.

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Wednesday, August 17, 2022

Rethinking Guardianship To Protect Disabled People’s Reproductive Rights

Restrictive guardianships deserve increased scrutiny from policymakers in order to ensure that disabled people are not denied their reproductive rights.

A woman with Down syndrome draws on a community chalkboard at Lummus Park in Miami Beach, Florida. (Getty/Jeffrey Greenberg/Universal Images Group)

Authors:  Emily DiMatteo,  Vilissa Thompson,  Osub Ahmed,  Mia Ives-Rublee,  Ma’ayan Anafi

Authors’ note: The disability community is rapidly evolving to using identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this report, the terms are used interchangeably.

Introduction and summary

The recent U.S. Supreme Court decision to overturn Roe v. Wade undermines the reproductive autonomy of women in the United States in key, dangerous ways. For disabled women and other disabled people who can become pregnant, the implications are particularly grave, and multimarginalized disabled women will be disproportionately affected. Even with the protections afforded by Roe v. Wade, disabled women often faced disability-based discrimination in abortion access and reproductive health care more broadly. Now more than ever, policymakers must work to protect their right to bodily autonomy.

Defining guardianship

Guardianship provides a person the legal authority to make decisions for someone deemed ‘incapacitated.’ As a recent Center for American Progress report illustrated, such an arrangement “prevents disabled people and others from exercising their full reproductive freedoms.” While states may use different terminology when discussing guardianships, the arrangements can be generally organized into two broad categories:

  • Guardianships that are focused on an individual, which involve the guardian making personal affair choices, such as health care, living arrangements, and/or other legal decisions, on the individual’s behalf
  • Guardianships that are focused on property—called conservatorships in some states—involve the guardian handling an individual’s financial matters, assets, and benefits

This report focuses on the guardianship of individuals, particularly as it relates to reproductive rights and autonomy.

In 2021, pop star Britney Spears testified in court in her bid to gain independence from an almost 14-year conservatorship: “I want to be able to get married and have a baby. I was told right now in the conservatorship I am not able to get married or have a baby.” Spears’ conservatorship was terminated in November 2021. (In California, the term guardianship is only used for minors; thus, Spears’ case was called a conservatorship even though both her person and estate were reportedly controlled.) Although her situation is unique in a number of ways and her medical history is largely private, Spears’ experience—and the resulting #FreeBritney movement—helped bring public attention to guardianships and spotlighted their stigmatizing and invasive impacts on disabled people’s lives.

At least 1.3 million disabled people are under guardianship in the United States. However, few comprehensive statistics exist to illustrate the pervasiveness of guardianships, and there are few guardrails to ensure that disabled people retain their legal rights. In 2021, Sens. Elizabeth Warren (D-MA) and Bob Casey (D-PA) sent a letter to the U.S. Department of Health and Human Services urging it to increase oversight and improve data: “[A] lack of resources for court oversight and insufficient due process in guardianship proceedings can create significant opportunities for neglect, exploitation, and abuse.” Indeed, through news interviews, academic articles, and storytelling advocacy projects, disabled women have made clear that guardianship is one of the significant tools used to suppress their ability to make decisions about their reproductive health, such as obtaining and utilizing contraceptives, receiving sexual education, and accessing abortion care.

As part of CAP’s series on reproductive justice for disabled women, this report analyzes how guardianships can significantly impinge on a disabled individual’s reproductive rights. Specifically, it discusses the process of initiating guardianships and its legal shortcomings, the lack of guardianship data currently available, abuses that can occur under guardianships, and alternatives to guardianship. The report also provides policy recommendations for the federal and state governments and nonprofit organizations that provide services to individuals with disabilities. Federal and state-level policymakers must increase oversight; develop a set of basic rights for people under guardianship; provide funding for training and education for courts, attorneys, and parents; adjust transitional planning efforts; and improve data collection. Organizations must assist their clients with submitting guardianship-related Department of Justice (DOJ) complaints, start or increase the collection of relevant data, and improve outreach to marginalized populations, including communities of color and immigrants.

Emma’s story

Protecting disabled people’s legal rights means allowing them to make their own reproductive decisions. Emma Budway, a nonspeaking autistic woman in Virginia, is working to transition out of her guardianship once she receives an assistive technology device. When the authors recently interviewed her with the communication assistance of her guardian, Emma was passionate about using alternatives to guardianship as she works to transition out of her current arrangement: “I have the ability and agency to make decisions about my life. I am in full control. For example, I take a birth control pill for cessation of menstruation; that is my decision.”

The legal process of initiating guardianships

The process of initiating a guardianship typically begins after a family member or social worker—depending on the disabled individual—files a petition in court stating that the individual is incapacitated and requires a guardian. Different states define incapacity differently—for example, Virginia’s definition, along with those of other states, notes that poor judgment is not sufficient evidence for incapacity. It is usually defined in the context of mental capacity or decision-making ability. Guardianship proceedings often treat capacity as a static concept, meaning that “if one doesn’t have capacity for everything, then one doesn’t have capacity for anything.”

Once the guardianship petition is submitted, many states—although not all—take steps to ensure that the individual understands the petition. Although definitions of incapacity vary among states, many evaluate a person’s functionality and cognition—and the necessity of a guardianship—based on potential risks and harm. For example, several states decide that a person lacks functionality when they are believed incapable of upkeeping basic levels of health and safety. An individual then undergoes a capacity evaluation and is appointed legal representation, sometimes in the form of a court-appointed guardian ad litem.

Richard LaVallo, legal director of Disability Rights Texas, notes a large problem with this process: While a person with a disability needs a lawyer that will “honor the expressed wishes of their client,” the reality of guardianship cases is often that “lawyers don’t represent what [a] person with disability wants but instead superimpose the best interest standard.” The best interest standard does not prioritize the disabled person’s wishes but instead what is considered best for that individual. This process can be problematic, because once a guardianship is granted, most courts remove many—if not all—of an individual’s legal rights to make their own decisions, including their ability to hire their own lawyer. Instead, the courts appoint a guardian to make such decisions on their behalf, leaving the disabled person with little to no recourse to exercise personal autonomy in nearly all aspects of decision-making.

The complicated process of initiating a guardianship and, in particular, assigning legal representation is corroborated by Emma Budway, who described her experience with a guardian ad litem in an interview with the authors. The guardian ad litem claimed that Emma should not retain her constitutional right to vote while under guardianship, a decision she believes her guardian ad litem made because he was unfamiliar with her form of communication. Fortunately, Emma and her family had some resources at their disposal to assist in educating him. However, this uninformed and egregious initial determination, based on a lack of knowledge about disability or potentially even on bias, demonstrates the need for more education for both potential guardians and guardians ad litem so that ableism is not weaponized to hinder the rights of a person under this process. Emma’s experience illustrates how easily ableism can discredit a disabled person’s ability to participate meaningfully in society.

The school-to-guardianship pipeline

Many students with intellectual and developmental disabilities enter the school-to-guardianship pipeline through high school transition planning. Under the Individuals with Disabilities Education Act (IDEA) of 1990, students leaving high school are supposed to work with schools and their parent or guardian to go through a transition period during which rights are transferred directly to the student. However, this “transfer of rights” process often results in school officials suggesting that parents become legal guardians of their young adult children. According to some studies, almost 60 percent of people with intellectual and developmental disabilities ages 18 to 22 who receive publicly funded services have guardians and report that schools often present guardianship as the main or default option to support young adults in decision-making. Some school professionals may not provide parents any information on alternatives to guardianship.

When guardianship is explored at this juncture, school officials and parents are often unaware of the potential long-lasting consequences of guardianship. For instance, a disabled student under guardianship loses their rights to make decisions about their future education and plans after high school, which counteracts IDEA’s promotion of self-determination and independence. Parents who speak English as a second language or who are from low-income and marginalized communities may have even more difficulty accessing the necessary information about less restrictive alternatives to long-term guardianship.

Laws regarding guardianships

There is no federal legislation on guardianship. And while guardianship law varies across the country, states’ general approach is largely similar. According to the National Center on Law and Elder Rights, almost every state notes that guardianship should only be used as a last resort when alternatives do not suffice and a person is found to be incapacitated. The majority of U.S. jurisdictions—84 percent—require courts to consider less restrictive alternatives to guardianships; about 22 percent specifically mention supported decision-making as an alternative—an option explored in more detail later in this report. There are multiple types of guardians: family members, state-managed public guardians, and privately managed guardians. In some states, professional guardians such as private individuals or organizations charge fees and are not typically subject to the same standards as public guardians who undergo training. In Virginia, for example, most individuals under guardianship have private guardians, which can include family members, who do not have to meet the same standards as the Virginia Public Guardianship and Conservator Program.

Although courts are required to consider less restrictive alternatives, such as limited guardianships or supported decision-making, they typically impose full guardianships, which are often “overbroad and unwarranted.” In full guardianships, the guardian makes all decisions for the person, including but not limited to decisions around health care, money, and lifestyle choices. According to Virginia guardianship data provided to CAP by the Supreme Court of Virginia’s Office of the Executive Secretary, an average of 96 percent of guardianships granted from 2015 to 2021 were full guardianships. It is also rare that an individual’s rights are restored or that a guardianship ends—in fact, guardianships usually terminate at the end of an individual’s life. Some states, including Texas, allow for automatic reviews of guardianships and have instituted safeguards to encourage restoration of rights, but it is uncommon for an individual to be able to end their guardianship and get their fundamental rights restored. According to Virginia’s guardianship data, more than 4,000 guardianships were granted in the state between 2015 and 2021—and only 10 people were restored to capacity.

Other legal arrangements, including health care powers of attorney, allow individuals to make decisions with disabled people directly; in many states, however, there is ambiguity about the authority of these agents compared with that of guardians. In Virginia, options such as powers of attorney can only be used when the disabled individual has capacity to sign a contract, something not possible under guardianship. Moreover, guardians often have full access to an individual’s health records, which enables them to make reproductive and other health decisions for the person under guardianship. Guardians can also make decisions for individuals about who they can interact with—despite laws prohibiting this—due to a lack of court oversight and sometimes guardians’ poor understanding of the law. This lack of oversight and enforcement mechanisms can infringe on individuals’ rights to engage in intimate and nonintimate relationships and friendships as well as their ability to integrate into their communities.

Thirty-six states have passed the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA), which created reforms such as the right to social interaction, expanded procedural rights, and clear decision-making standards. However, the UAGPPJA also makes it easier to transfer guardianships between states, which may result in keeping people under guardianships for longer periods of time.

Data on guardianship in the United States

Outside of academic studies and individual interviews, comprehensive and national data on guardianships—both regarding the population under guardianships and details such as filing rates—are largely unavailable. Studies have found people with intellectual and developmental disabilities to be at higher risk of entering into guardianship, although not all people under guardianship have such disabilities. Other communities at risk for guardianship include but are not limited to people with mental health disabilities and dementia. Many reports have cited the lack of guardianship data as an impediment to reform, with the Fourth National Guardianship Summit identifying the need for each state’s highest court to collect “timely guardianship data.” The National Center for State Courts has corroborated this need and put forth National Open Court Data Standards and specifically recommended the collection of data elements for guardianships and conservatorships. Data on race and ethnicity in particular are lacking: When the authors requested these data from Texas and Virginia, they were told it is either not collected or that disability service providers do not usually report it to the state. The authors focused on Texas and Virginia because in 2015 Texas became the first state to introduce alternatives to guardianship, while Virginia passed alternatives in 2020 and has a recognized model for public guardianship. The states are also home to the two women interviewed for this report.

This report analyzes National Core Indicators (NCI) data, one of “the only sources of nationwide data on people with [intellectual and developmental disabilities] and guardianship” in both the weighted national average and within Virginia and Texas. There are caveats to these data—the NCI collect them by surveys in participating states to better understand people with intellectual and developmental disabilities who receive public services from developmental disability state agencies. The main responses from adults under guardianship come from surveys completed in person, meaning that some participants responded “don’t know.” This may be the case, for example, if someone does not know the type of guardianship they are in. There is also a potential risk of a guardian affecting how a participant responds if the participant lives with them. Additionally, as state participation is voluntary and states use slightly different sampling strategies, the weighted national average cannot be considered nationally representative. However, the NCI data still provide insight into populations with intellectual and developmental disabilities under guardianship across the United States, especially because it does collect data on race and ethnicity.

Previous analyses of NCI data note that among disabled individuals with guardians, Black people were more likely to have a public guardian than white or Hispanic people. The 2018–2019 in-person survey respondents under guardianship were less likely than the respondents without guardians to make decisions regarding where to live, who to live with, and their daily schedule. People under guardianship were also more likely to live in group residential facilities than in their own homes. In fact, respondents that lived in their own homes were significantly less likely, across various race and gender backgrounds, to report being under guardianship. This might suggest a higher possibility of community integration for people not under guardianship—something required under the U.S. Supreme Court’s ruling in Olmstead v. L.C. Additionally, because very few individuals under guardianship live in their own homes, and because so many often have a family member as their guardian, they may lose autonomy over their sexual rights—ranging from the right to engage in relationships to the right to have sex.

NCI averages from 2016 to 2019, as well as state data from Texas and Virginia, show that people under guardianships are much more likely to be in a full guardianship than a limited guardianship. The NCI average in 2018–2019 was 33 percent of individuals in full guardianships and 6 percent in limited guardianships. This is consistent with literature reporting that guardianships are structured more frequently to take away all the person’s rights rather than being more targeted partial guardianships.

As described throughout this report, the access that people in guardianships have to reproductive health care is often legally overseen or controlled by guardians. However, some states—such as Texas—have made efforts to shift decision-making power over reproductive health and rights to the individual under guardianship. While it is difficult to establish causality, outcome data for people with intellectual and developmental disabilities, as captured by the NCI, indicate an interesting correlation between a state’s concerted shift to comprehensive shared decision-making arrangements and its reproductive health outcomes, such as rates of Pap smears and mammograms. For example, available data from the NCI show that Texas and Delaware—which both codified supported decision-making policies into statute in 2015 and 2016, respectively—had among the highest percentages of women with intellectual and developmental disabilities who had received either a Pap smear or mammogram in the past two years.

Texas’ Guardianship Abuse, Fraud, and Exploitation Deterrence Program

The Texas Guardianship Abuse, Fraud, and Exploitation Deterrence Program (GAFEDP) was created in 2019 to review and monitor guardianship cases with a particular focus on addressing harms and abuse occurring under guardianship. Although not operational in all counties in the state, the program has reviewed more than 46,000 guardianship cases. Data in a GAFEDP report mirror many of the NCI data findings. More than two-thirds of current active guardianship cases in Texas involve people appointed between ages 18 and 44, with a fairly even balance of men and women. Most cases are guardianships of the person. The GAFEDP collects data on the reason for guardianship reported in petition filings, finding that almost 70 percent of all cases reported intellectual disability as the reason for guardianship, along with about 10 percent of cases due to aging issues and about 8 percent due to mental illness. The vast overrepresentation of people with intellectual and developmental disabilities under guardianship is consistent with previous research, and the GAFEDP provides a model for other states to study the reason for guardianship among active guardianship cases. More than half of individuals under guardianship live with their guardian; other common living arrangements include residential facilities such as group homes or nursing homes.

Only 4 percent of individuals live in their own home, which again supports the possibility that guardianship might impede independence and integration into the community. Finally, a large majority of guardians are related to the individual under guardianship, and they are most commonly a parent.

Denial of rights and perpetuation of harms and abuse under guardianship

Pervasive beliefs about a lack of reproductive decision-making capacity among disabled people—coupled with the disturbing historical inclinations to control the fertility and reproduction of disabled women and people who can become pregnant that persist to this day—make the topic of reproductive health care access and sexual relationships among people with disabilities especially complicated and fraught. Adding guardianship to the equation exacerbates serious concerns about bodily autonomy and the systemic denial of reproductive rights and privacy.

Guardianships can be helpful in certain, carefully prescribed circumstances. However, when it comes to accessing reproductive health care or deciding to enter into a healthy sexual relationship, guardianship arrangements are inherently problematic. As Sam Crane, the legal director of Quality Trust for Individuals with Disabilities, explains:

Guardianship can take away a person’s right to consent to sexual relationships and retroactively determine that sexual relationships are nonconsensual. It’s also been used to take away people’s ability to make private, enforceable health care decisions because the person under guardianship doesn’t have the right to privacy with their health care information.

Indeed, allowing a guardian to make fundamental decisions—such as the decision to procreate, prevent pregnancy, or obtain an abortion—on behalf of the individual under guardianship infringes on several constitutional rights, including the right to due process and other fundamental rights to privacy.

Guardianship has serious implications for the autonomy of disabled people in reproductive health decisions. In many cases, the guardian’s role includes making health care decisions for an individual or helping the individual make such decisions, ranging from scheduling doctor’s appointments to undergoing invasive surgical procedures. Eight states have no statutory restrictions about guardianship health care decision-making, some states require court approval for certain critical health procedures, and others prohibit the guardian from consenting to certain invasive procedures on behalf of the individual. Nine states restrict a guardian’s authority to consent to abortion care on behalf of the individual, and most others require court approval for procedures such as abortion, sterilization, and psychosurgery.

State laws that require consent from individuals remain ineffectual or even harmful due to procedural and implementation barriers. As noted by the American Bar Association, “The real progress in guardianship reform lies in turning good law into good practice.” For instance, some states require that guardians not only consider but center the wishes and preferences of the individual under guardianship in reproductive decision-making. Realistically, however, some guardians may not understand how to adequately involve the individual in this process or may choose to ignore this requirement altogether. Furthermore, the repercussions for guardians who fail to abide by a legal requirement to involve an individual in decision-making are typically not outlined within law. Procedurally, there are also major gaps in actualizing the intent of past court holdings: For example, judges in many states are permitted to waive the requirement for individuals under guardianship to participate in court proceedings, which conflicts with efforts to ensure that the individual is present so that a judge can consider their preferences and/or lived experiences as part of rulings.

Forced sterilization

People under or at risk of guardianship face an additional threat to their reproductive freedom: the possibility of state-sanctioned forced sterilization. The National Women’s Law Center recently released a report showing that state-sanctioned forced sterilization of disabled people is allowed in 31 states and Washington, D.C. These laws allow another individual—most commonly a legal guardian—to petition a court for the sterilization of someone who is purportedly unable to provide informed consent, claiming that being sterilized is in that person’s best interest. These laws—which first emerged in the 1970s but have been adopted as recently as 2019—have proliferated under the guise of protecting disabled people and sterilizing them for their own good. In reality, they enact trauma and violence on their bodies and continue an ugly legacy of forcibly sterilizing disabled people, especially disabled people of color and disabled poor people.

Even states that do not have explicit forced sterilization laws fail to affirm disabled people’s rights to make decisions about sterilization. Two states prohibit forced sterilization but do so in a manner that prevents some people under guardianship from accessing voluntary sterilizations. Other states do not have specific guidance on forced sterilization, and it is unknown whether guardians in these states are using their decision-making powers to get this procedure for people under guardianship without any judicial review.

In states with explicit forced sterilization laws, forced sterilization is often built into guardianship structures. In about half of states with forced sterilization laws, the guardianship statute itself lays out when and how a guardian can petition a court for forced sterilization. In other states, forced sterilization laws exist independently and could apply both to those who are under guardianship and those who are not. Even in these states, however, it is likely that these laws primarily affect people under guardianship; they apply specifically to people who are deemed unable to make their own decisions about sterilization, a judgement that overlaps closely with the finding of incapacity used to place people under guardianship.

In many states, people under guardianship who are subjected to a forced sterilization hearing have few procedural protections. In some states, a forced sterilization hearing can proceed even if the person under guardianship is not present—and even if they are unaware of the hearing. Some states have stronger procedural protections, although judges do not always follow the requirements in practice. Ultimately, however, procedural protections do not transform a forced sterilization into a voluntary one: No matter how strong the procedural protections are, these laws enable the violence of forced sterilization, empowering judges to make decisions regardless of the wishes of people under guardianship.

GAFEDP reviews of guardianships in Texas

In fiscal year 2021, GAFEDP reviews found 1,042 deceased people under guardianship whose cases had not been closed, and almost one-third of reviewed cases were missing annual reports. Almost 40 percent of reviewed cases were out of compliance with guardianship laws.

Examples of specific incidents reviewed include an individual under guardianship who expressed medical concerns only to have their guardian refuse to seek medical care and use so-called “home remedies” instead; an individual who passed away after improper medical care from their guardian; and an individual who was returned to the care of a guardian who was previously removed due to neglect and exploitation. Such findings in Texas, only brought to light through the GAFEDP’s case audits, raise alarming concerns about the status of current guardianship cases within the state and in states that do not conduct audits.

One of the most disturbing aspects of guardianships is the haphazard oversight of those who act as guardians. This inattention creates room for pervasive and severe neglect, abuse, and harm. In some instances, a court-appointed guardian can prevent a disabled person’s family and loved ones from seeing them. States not doing due diligence in observing the care of people under guardianship can perpetuate the potential for negative impacts on their quality of life and personal safety.

Once a person no longer has the legal right to state concerns or protest a decision made on their behalf, the erosion of their personhood has begun.

A recent headlining story highlights the way disabled people under guardianships are exploited medically, physically, financially, and socially. In the heart-wrenching case of Bonnie Apple, featured in The New York Times, Apple’s alleged neglect by her guardian was so severe that she almost died from starvation. Although this may seem to be an extreme case, any abuse of power by guardians—whether court-appointed or a family member—has equally devastating effects on a person’s life. What these stories make clear is how vulnerable a person under guardianship becomes to someone with ill intentions surrounding their very livelihoods, as well as the lack of power they have to protect themselves and regain autonomy. Guardianships strip a person of their right to live their own life—to voice what their lives can and should look like. Once a person no longer has the legal right to state concerns or protest a decision made on their behalf, the erosion of their personhood has begun.

Supported decision-making and state laws

In light of the harms and suppression of rights under guardianship, less restrictive alternatives are needed. Supported decision-making is an identified alternative to guardianship. It is defined as “a series of relationships, practices, arrangements, and agreements, of more or less formality and intensity, designed to assist an individual with a disability to make and communicate to others decisions about the individual’s life.”

Skye Marsili, a woman with Down syndrome in Virginia who recently transitioned out of a guardianship into a supported decision-making agreement, appreciates that she is in full control of her decision-making and uses her circle of relationships as she navigates young adulthood. She shared: “[My supporters] help me with my feelings and living skills … with happiness, fun, family, smiles … romance—I absolutely love that … I talk to them about it privately because it’s not about them. I know they are trying to help me.” Skye’s former guardian, her mother, noted that Skye’s guardianship was terminated when she reached age 18, and she started using supported decision-making after participating in a state pilot project, discussed below. As individuals transition out of guardianships into these less restrictive arrangements, former guardians must adjust too. A key point Skye’s mother made as she adjusts to being a support for her young adult daughter is the importance of giving Skye space to be independent and not stifling life lessons: “So I think that it’s important, to not—even when you’re not legally the guardian, you don’t act like the Guardian with a capital ‘G.’ She’ll make mistakes just like all of us make mistakes and hopefully they won’t be harmful. … Part of growing up is making mistakes and learning from that.” This intentional mindset illustrates the respect that exists between Skye and her mother and how that respect fosters a strong sense of trust and enables the young adult to share what she wants to with her mother without judgment or dismissal.

Supported decision-making arrangements center the disabled person and allow them to decide their goals, the people in their life they trust, and who they can go to for advice on certain topics. There is no one-size-fits-all model; supported decision-making arrangements can be used among different people in different circumstances.

Previous studies have considered individuals with psychiatric disabilities who use supported decision-making arrangements in conjunction with psychiatric advanced directives to express preferences about treatment and communication. Other research on guardianships has shown that “overly restrictive guardianship regimes” may correlate with decreased self-determination and overall health. For example, people with intellectual and developmental disabilities without guardians have been found to be more likely to live independently, socialize in the community, and have a paid job. Supported decision-making has been implemented internationally in countries such as British Columbia, Canada, which adopted a form of supported decision-making that went into effect in 2000.

Supported decision-making arrangements center the disabled person and allow them to decide their goals, the people in their life they trust, and who they can go to for advice on certain topics.

As the practice continues to gain traction in the United States, supported decision-making “has shown promise to increase self-determination and quality of life.” The U.S. Administration on Community Living has funded projects to study and promote awareness of supported decision-making, including the National Resource Center for Supported Decision-Making. The National Guardianship Association has stated that supported decision-making “should be considered for the person before guardianship.” As empirical research on supported decision-making continues, it is key to note that there is minimal empirical evidence in support of guardianship.

Several states have conducted model projects on supported decision-making to study its effects in practice. Although such model projects usually include a relatively small number of participants, their results are still helpful in understanding how supported decision-making can be used in practice. The Arc of Northern Virginia’s model project, which began in 2019, helped participants with intellectual and developmental disabilities create supported decision-making agreements with identified supporters. The project also involved education and training outreach to more than 2,000 disabled individuals, professionals, and their families. Participants reported increased independence, self-determination, and improved decision-making skills. Another model project in Massachusetts found that supported decision-making was most commonly used in health care and financial decisions, with results including increased “self-esteem and self-advocacy.” One participant’s guardianship was even discharged after their participation.

States can implement supported decision-making legislation in different ways, such as requiring specific forms of supported decision-making arrangements or providing guidance for medical professionals to recognize the system. Some states, including Texas, Delaware, and Washington, D.C., require a written supported decision-making agreement form in order for the arrangement to be legally recognized.

State examples of supported decision-making

In 2015, Texas became the first state to statutorily recognize supported decision-making as an alternative to guardianship and later expanded the law to include safeguards against abuse. The three-pronged legislation was intended to decrease unnecessary guardianships by requiring courts to find “clear and convincing evidence” that alternatives to guardianship are not possible. It also includes training for attorneys working on guardianship cases to learn about alternatives to guardianship in addition to supports and services.

Virginia amended its guardianship law in 2020 to require guardians ad litem to explore supported decision-making agreements as a less restrictive alternative to guardianship. Virginia was also one of the first states where a U.S. court ordered supported decision-making as an alternative to guardianship, when, in 2013, Jenny Hatch argued that the loss of her right to work and live in the community because she was under a guardianship was a violation of the Americans with Disabilities Act of 1990 (ADA). The new law, which was passed in 2020, specifically requires a school-aged person between the ages of 17 1/2 and 21 who is potentially vulnerable to have their guardianship continue into their adult life and to have their individualized education program (IEP) reviewed and report submitted to the court as part of evaluating the person’s capacity. Additionally, the Virginia Department of Education is required to provide information on supported decision-making and other alternatives in IEP meetings to address the school-to-guardianship pipeline.

Policy recommendations

Federal policy recommendations

Federally recognize supported decision-making

In line with the findings from the Fourth National Guardianship Summit in 2021, the federal government should recognize supported decision-making as a reasonable accommodation under the ADA. This would allow different providers, from doctors to banks, to recognize supported decision-making agreements.

Create a federal bill of rights for people under guardianship

Congress should pass legislation to create a national bill of rights, similar to state bills of rights, for people under guardianship. Disability Rights Texas suggests that the bill should use the language “person under guardianship” instead of “ward.” The bill of rights should include specific rights to sexual expression and autonomy over reproductive health decisions in which the individual consents, not their guardian. When making health decisions, especially reproductive health decisions, the individual should be able to request private communication with medical professionals without interference from their guardian. Medical practitioners and professionals will need to be trained to understand how an individual uses alternatives to guardianship when making reproductive health decisions. Additionally, guardians should be required to get court approval to restrict or modify visitation for the individual under guardianship. Lastly, a bill of rights must be enforceable; it must allow disabled individuals the right to their own attorney separate from the guardian’s attorney and give them the ability to sue either the state or guardian for any violation of rights.

Collect comprehensive data

Despite some data on people with intellectual and developmental disabilities from the NCI, more systematic analysis and data collection are needed to better understand the relationship between guardianship, race, and ethnicity. Additional points of data collection should include gender identity, living situation, age, and reason for guardianship. Because the current data available largely include people with intellectual and developmental disabilities, efforts to identify other disability populations at risk for guardianship—including those with mental health disabilities—should be prioritized. The DOJ and the Department of Health and Human Services should provide guidance and technical assistance to state agencies on best practices to collect and analyze these data. Without accurate data that specifically capture multimarginalized communities under guardianship, reforms cannot be comprehensively advanced.

Create court improvement plans

Congress should pass legislation that creates a court improvement program around guardianships and supported decision-making similar to the Omnibus Budget Reconciliation Act of 1993, which approved Public Law 103-66 to improve child welfare. The program could provide state courts with grant funding to improve data collection and provide training to staff on guardianship, supported decision-making, and disability rights. Federal data could assist states in improving their processes and increasing reviews to help reduce abuse, neglect, and misuse.

Provide transition services

From 2016 to 2018, the percentage of men and women in full guardianship was higher in lower age brackets (ages 18 to 34) than higher age brackets (ages 35 to 74) across race and ethnicity in Texas, Virginia, and in the NCI average. This supports the research findings that many people with intellectual and developmental disabilities enter into guardianship at younger ages during transitions out of high school.

The federal government should therefore create guidance under the IDEA to improve transition planning by better educating school personnel on guardianships, its uses and forms, and the alternatives, including supported decision-making. The IDEA’s prioritization of utilizing the least restrictive settings should still be deemed mandatory for any transition plan. The District of Columbia Public School system prioritizes transitional services that help divert individuals from guardianship by including information on supported decision-making during transition services for students and their families. Practices such as this could serve as a model for other states to address the school-to-guardianship pipeline through the implementation of alternative arrangements directly into the transition process.

Additionally, the Administration on Community Living should continue to fund and expand initiatives such as Youth Voice, Youth Choice that include training for youth ambassadors to raise awareness about how alternatives to guardianship work in practice. These programs provide families and individuals with disabilities examples of how to create transition plans that fit students’ needs and ensure that they maintain as many rights as possible.

State policy recommendations

Reform guardianship training

State governments should mandate training about alternatives to guardianship for guardians ad litem, attorneys, and judges involved in guardianship cases. Trainings should include how alternatives can be possible for people with different types of disabilities and how to best evaluate options for people at risk of guardianship. Guardians ad litem should be trained on how to communicate directly with disabled individuals and their families in culturally competent ways.

In this regard, other states may look to Texas as a model. Texas Government Code 81.114 requires attorneys to receive specific training on guardianship—including information about disability bias, guardianship laws, and alternative services and options—before they can bring a guardianship claim to court.

Fund supported decision-making model projects

Given the emerging research and positive outcomes from state-level supported decision-making model projects, states should begin or continue to fund such projects. Emma, Skye, and their families described participating in a supported decision-making pilot project as a unique experience. The project, offered by the families’ local Arc chapter in Virginia, provided education about guardianships and supported decision-making and set both families on the course to ensure that Emma and Skye understood their rights and how they can play an active role in deciding how they want to live their lives. Emma had this to say about the project: “I learned so much about my rights. I was able to pull together my circle of support. I can live my best life.”

Being a part of the project undeniably shaped the way Emma and Skye view the control they have over their passions, their dreams for the future, and the roles those in their lives play—the roles that best suit Emma and Skye, not the other way around. Their confidence is deeply rooted in an understanding that they are not a background figure in their lives but instead at center stage. When asked who her current guardian is, Skye proudly proclaimed, “Yes—me! I make my own decisions.”

Any supported decision-making projects should consider how the approach can function in practice under certain circumstances and for reproductive health decisions. Because supported decision-making arrangements must be understood and accepted by a variety of actors, from the courts to doctor’s offices, model projects must continue raising awareness about them, especially in states that do not formally recognize such arrangements. Model projects should also incorporate a diverse range of participants—including disabled people of color of different ages, income levels, and housing situations—to examine how the arrangement best works across various communities. The impact of factors such as race and socioeconomic status must be studied in order to understand if and how people participate in supported decision-making. Model projects and programs should seek to recruit participants from communities, including nonspeaking disabled people.

Reduce usage of guardianships

With the findings from model projects and data collection, states should modify guardianship legislation so that alternative approaches—rather than full guardianship—are the default option, including supported decision-making. According to Texas’ Annual Statistical Report for fiscal year 2021, guardianship filings decreased by 2 percent from 2016 to 2021. This decline in the number of guardianships filed in Texas can likely be attributed to the state reforming legislation to require the use of alternatives before guardianship.

However, supported decision-making legislation should be implemented alongside other mechanisms to ensure that the approach is utilized and enforced. For instance, even though guardianship agreements can be targeted to specific issues such as health care or financial decisions, research shows that more than 90 percent of guardianships remove all of a person’s decision-making rights.

Provide education around sex and sexual rights

States should consider undertaking legislation to connect guardianship with the empowerment of sexual rights, such as companion reforms about sex education. Illinois has led the way on this front. In 2019, the state specifically amended its Mental Health and Developmental Disabilities code to incorporate sex education reforms for people with intellectual and developmental disabilities. The code now requires residential and vocational facilities serving people with intellectual and developmental disabilities to evaluate their consent capacity and provide sexual education. According to Teresa Parks of the Illinois Guardianship and Advocacy Commission, this effort was led by the Illinois Self Advocacy Alliance after the Illinois Human Rights Authority received complaints of violations of the sexual rights of people with intellectual and developmental disabilities. Self-advocates then communicated the need for sexual education and freedom of sexual rights to service providers, families, and guardians in stakeholder meetings. This provides a model for other states considering the connections between guardianship and reproductive health decisions. State officials can work with advocates with disabilities, service providers, and guardians to evaluate the potential of such legislation.

Organizational recommendations

Submit guardianship complaints to the Department of Justice

Nonprofit organizations that provide legal services to people with disabilities should submit complaints of harms such as abuse, fraud, and/or exploitation to the DOJ. The DOJ utilizes complaints to decide which issues it investigates, and coordinating numerous submissions from different clients will help encourage the department to take up guardianship issues.

Increase provider data collection

Nonprofit organizations and service providers for people with disabilities, particularly those that provide guardianship services, should collect data on demographic information, including race and ethnicity, age, gender identity, and housing situation. They should report these data to the highest court of each state that handles probate or guardianship cases to assist in data collection efforts. This will allow both service providers and states to better understand trends in the populations under guardianship.

Conduct outreach to marginalized communities

Additionally, nonprofit organizations conducting educational and outreach efforts about alternatives to guardianship, such as supported decision-making, should specifically coordinate to reach communities of color. This could include creating FAQ guides or materials in multiple languages. For example, the Illinois Guardianship and Advocacy Commission, Illinois Self Advocacy Alliance, Blue Tower Solutions, and other stakeholders collaborated with the Illinois Department of Human Services to create fact sheets, FAQs, and a sexual rights statement to facilitate sex education for adults with intellectual and developmental disabilities. These materials are available in the major languages spoken in the state—Spanish, English, Polish, and Chinese—and in multiple easy-to-read and universal design formats. Training sessions and “train-the-trainer” series are also available.


Guardianships restrict disabled people’s ability to make their own decisions, including around reproductive health care. However, supportive decision-making provides a promising new avenue to reduce overreliance on antiquated and poorly regulated guardianships. Emma and Skye’s experiences with supported decision-making show that individuals placed into restrictive guardianships can transfer—or work to transfer—successfully into alternative programs that allow them more agency. Their experiences are not isolated occurrences; they show the need for policymakers to create less restrictive programs that allow disabled people to make their own choices and to retain their reproductive freedoms.

The policy recommendations provided in this report serve as a starting point for policymakers to tackle the complexities of guardianship. In light of the overturning of Roe v. Wade, such work is more important than ever before.


The authors would like to thank Kyle Ross, Justin Schweitzer, Suzanne Harms, Nicole Lee Ndumele, Maggie Jo Buchanan, and Jill Rosenthal for their input. They would also like to thank Richard LaVallo from Disability Rights Texas, Sam Crane from the Quality Trust for Individuals with Disabilities, Teresa Parks from the Illinois Guardianship and Advocacy Commission, Krescene Beck from Blue Tower Solutions, Adam Wiser from the Illinois Self Advocacy Alliance, Emma and Donna Budway, and Skye and Tia Marsili for their participation in interviews with the authors.

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