National News

‘I’m Petitioning ... for the Return of My Life’

Posted December 8, 2018 3:44 p.m. EST

John DiGiacomo and his mother at their home in Islip, N.Y., on Long Island, Nov. 14, 2018. DiGiacomo wanted to keep his mother, Agnes, in her home with him. A transfer to an assisted living facility, he said, would kill her. His sister and a guardian disagreed. (Lily Landes/The New York Times).

NEW YORK — The last weeks that Phyllis Funke could legally make decisions for herself, she climbed into bed, planning to stay there for a while. It was the end of 2016 and she felt disillusioned with the election and wounded by her brother’s recent move to Texas.

She wasn’t considering suicide, she said. She just needed to go under the covers until she could figure out how to deal with the rest of her life, so totally alone.

She had credit cards, a car, friends and financial advisers in Maine and New York.

When a caseworker from Adult Protective Services and a city psychiatrist entered her apartment on March 3, 2017, clipping the security chain because she did not answer the door, she was unraveling emotionally and physically, at risk of becoming homeless or worse. She had no idea what price she would pay for the intervention.

“I’ve been bullied, blackmailed and stripped of the things I need to live, including my money,” she said on a recent afternoon. “Everything has been taken away from me. I have no access to my bank accounts. I don’t have the money to pay for the medications that I’m prescribed. I don’t get mail. I can’t choose my own doctors.”

Funke had entered the world of adult guardianship.

In a city like New York, where people are used to looking past their neighbors, how often do you see someone and ask yourself, Is that person OK? Should I call someone? Maybe they’re older and not moving well. They look adrift in the produce aisle, or you pass their open apartment door and you can’t see the floor for the clutter. You’re a paramedic and they’re refusing to go to the hospital after a bloody fall. It’s your mother or your uncle, and you’re worried about the bills piling up, or the email scams or the sudden loan to a stranger.

You bandage the wound or you promise to check in tomorrow, or you turn away and get on with your life.

Or you call Adult Protective Services. After all, that person needs some sort of protection, doesn’t she?

For Funke, that call came from the management of her building, after she didn’t respond to court motions to evict her for hoarding.

Funke, 77, has a master’s degree from Columbia University, a pilot’s license and — she believes — several hundred thousand dollars in investments, mostly an inheritance from her parents. She is a scuba diver, an avid reader and a global traveler. She has lived in the same cheap apartment for 41 years. If it were up to her, she said, she would be sailing in the Marquesas Islands in French Polynesia right now.

She is also, in the eyes of New York state, an “incapacitated person.” She has been deemed unable to manage her personal needs and property, or to understand the danger she had fallen into.

What started as a complaint about clutter grew to affect every aspect of her existence, including her right to make basic decisions about her life, own a gun or enter into certain legal contracts. Her appointed guardian, a former police officer, said he was unsure whether Funke had the right to marry.

“I feel as if I have absolutely no rights at all in the country in which I was born, and therefore in the rest of the world,” Funke said. She compared her situation to being in prison, then thought better of it. “It’s worse than incarceration,” she said. “At least in prison you have rights.”

If you have heard at all about guardianship for older adults, chances are that it has been about a predatory guardian who plunders the estate of a helpless older person. In New York, the poster victim is a Brooklyn judge named John Phillips, whose guardians sold off more than $20 million of his real estate and left him to freeze to death in 2008 in a facility unlicensed to treat people with dementia.

Last month, the U.S. Senate Committee on Aging called for massive reforms in the guardianship system, warning that “unscrupulous guardians” have used their position to get control of vulnerable people and then “liquidate assets and savings for their own personal benefit.”

When I started to look into guardianship, I expected to find many such clear-cut cases. In New York, anyone can petition to have someone declared incapacitated. A judge may then appoint a family member or a third party, usually a lawyer, to be guardian over the person’s physical needs, financial affairs or both. Critics of guardianship say these strangers have open license to raid their wards’ estates.

But as I met families in contested guardianships, more often the conflicts involved sibling infighting, with children battling for control of their aging parents’ assets, crying foul if the courts did not side with them. A retired banker in Brooklyn, for instance, was placed under guardianship after two of her children accused a third of stealing from her. Now they are all in court.

On Long Island, a son was trying to keep his frail, blind mother at home, battling a daughter and a guardian who wanted to move her to an assisted-living facility. The son blamed his sister and the guardian and the judge and the court evaluator and a real estate broker.

On Manhattan’s Upper West Side, a mentally ill woman who was living with her mother became homeless after the mother’s guardian obtained a court order barring her from the apartment, because he said she was interfering with the mother’s care. These families, too, are in court.

Guardianship was where the breakdowns of modern life — broken families, broken health, broken finances and broken bureaucracy — tumbled together in a system that appeared to bring out the worst in people: secretive, confusing and run by lawyers, with extraordinary powers over vulnerable individuals. It was also the last defense for lives that had come undone.

Then there was Phyllis Funke.

Her letter of introduction began, “Permit me, please, despite the above-noted ‘situation,’ to introduce myself. (Assuming ‘I’ still exist; as I trust you’ll gather from the accompanying ‘tale,’ I’ve an officially appointed guardian who’s doing his darnedest to eradicate ‘me’ — possibly violating New York City and State laws while denying me all my assets, civil rights, and often telephone service).”

Funke was something different.

She was a journalist and had written freelance articles for The Times, among other places. She said she’d reported from more than 150 countries. Her father, Lewis Funke, had been a drama editor and critic at The Times. Roy Cohn, Sen. Joseph McCarthy’s notorious counselor, was a distant relation; Dick Morris, the controversial former political consultant, was her stepbrother.

When the city workers entered her apartment that day, they found her malnourished, dehydrated, unaware that she was under eviction proceedings or that she had not paid the rent in months. There was almost no food in the apartment, and clutter throughout.

As Funke remembered it, “They asked me who the president was, and I said, do I really have to say that name?”

She could not say how she got in her mental state; maybe it had to do with a lack of sleep. “I was eating less and less,” she recalled later. “I had pasta, and when I ran out of sauce I used Worcestershire sauce. There were cans of tuna but I couldn’t find a can opener, so I used a hammer and an awl.

“The closest I can come is to say I dissociated,” she said. “I checked out.”

In the coming months, while she recuperated in a nursing home, the protective-services agency petitioned the court to declare her incapacitated and place her under guardianship.

In court, the city psychiatrist testified that she suffered from “unspecified bipolar and related disorder, rule out bipolar II disorder, hoarding disorder and unspecified personality disorder.”

The designation “rule out” means that further examination was needed to rule out the disorder; according to Funke, no one ever conducted this examination, and the court records do not indicate any further evaluation. At one court hearing she appeared lucid and persuasive; at the next she was barely coherent.

The judge, Shawn T. Kelly, appointed a lawyer named Gil V. Perez to be her guardian, and suspended the eviction proceedings. It was for her own good.

Nancy Yonge, a friend of Funke’s from Smith College, saw the case differently. She had visited in late 2016, and found Funke lucid, planning her next travel adventure.

“She had financial advisers locally and in Maine who were looking after her resources,” Yonge said. “I do believe this case is all about the money. If she didn’t have money, they wouldn’t be after her this way.”

By the time I visited Funke this summer, she said that her dissociative state had passed, and that she was “sentient.”

Her apartment: books galore, yarn sticking out of a cabinet door, couch piled with knitting supplies and a laptop, wall art from her travels, room for two people to sit. Nothing outrageous. The next time I returned the papers had doubled, covering the couch and parts of the floor. She was working on her case, she said.

She produced a letter from a psychiatrist declaring her stable and “perfectly competent to handle all her affairs.”

In a country that guarantees the right to life, liberty and the pursuit of happiness, at what point does a person forfeit the right to make bad decisions? Some numbers would be helpful here: how many people are in guardianship, what assets they have, how many petitions are accepted or rejected. Unfortunately, those numbers do not exist in any meaningful way. Guardianship records are kept separately by each of New York’s 62 counties, with no standardized reporting and no state or city totals. Other states are similar.

“Why are there not systems in place?” asked Pamela Teaster, director of the Center for Gerontology at Virginia Tech University, who is studying New York’s guardianship system. “When you look for a shirt on the internet, your email will be filled with ads for shirts. We can’t track who’s under guardianship and their ages and health status.”

A “best guess” by the National Center for State Courts put the number of people in guardianship nationally at between 1 million and 3 million. In Manhattan, a database used by the court lists 2,596 guardianship cases for incapacitated adults, though some of these people may have died.

Other numbers do exist. Since last August, when the process started, Funke has been billed $16,800 by her court-appointed lawyer; $3,437 by a court evaluator, who deemed her in need of guardianship; $5,000 by her first temporary guardian, Perez, whose original request for $13,790 was slashed by the judge; at least $9,050 by her current guardian, who took over last November; plus money for a geriatric care manager and home attendants, whom Funke resents. (All fees must be approved by the judge.) Whenever the various players convened, the meter for Funke ran at close to $1,000 an hour, for a process she did not want.

When New York enacted its statute governing guardianship for older or frail adults, Article 81 of the Mental Hygiene Law, in 1992 (a different statute covers people with intellectual or developmental disabilities), it was considered a progressive model, requiring guardians to provide the least restrictive conditions possible and consider their wards’ preferences in all decisions.

“It’s a great statute,” said Kristin Booth Glen, a former judge who helped write Article 81 and now advocates for an alternative to guardianship called supported decision making. “And if people actually applied it, we wouldn’t have a lot of people under guardianship. But they don’t. That’s the problem.”

Instead, she said, judges have found it safer to overprotect people, and guardians, who bill their wards at steep hourly rates, have only their own moral incentives to do a good job — their clients are too incapacitated to object, and court monitoring is minimal. How minimal? Though the statute requires guardians to report on their wards’ assets and care within 90 days, a study of cases in 14 New York counties found that it took an average of 237 days, and then 210 days before anyone read it.

This leaves families feeling powerless and uninformed. Bars to entry are low: in New York, aspiring guardians must complete a one-day certification course. A 2010 report by the federal Government Accountability Office found that the courts conducted no background checks, relying on the applicants to disclose any criminal convictions or recent bankruptcies.

Once someone is under guardianship, it is very difficult to get out, because any resistance can be treated as evidence that they are at risk to themselves, so they need protection. For emotionally fragile people, the stress of guardianship — of paying to have your rights transferred to someone else — can make them even more fragile. And if a relative opposes a guardian’s actions, everyone involved — the guardian, lawyers for both the guardian and the ward, the court evaluator and possibly others — can bill the ward for their time.

“It’s total overkill, it’s completely unconstitutional and it’s done every day,” Glen said. “And it’s done in the name of protection. And the real question is, does it actually protect people? There’s no evidence that it does. When you give one person total power over another person’s life, including the power to isolate that person, you’re setting them up for abuse and neglect and exploitation.”

Guardians and judges complain that the system is vastly underfunded, and that most wards have little or no assets to pay for time-consuming work. Several nonprofit organizations provide guardianship for poor individuals.

Jean Callahan, who oversees low-income guardianship cases as attorney in charge at the Legal Aid Society’s Brooklyn neighborhood office, likened guardianship to nursing homes. “It’s not what anyone would choose, but I’m glad they’re there,” she said. “It’s a blunt instrument, but it does solve problems sometimes.” Even then, though, it transforms one sort of bad situation — the descent into helplessness — into another, which is a supported death. There are no happy outcomes.

Phyllis Ellen Funke grew up in the Parkchester section of the Bronx and later Mount Vernon, a high-achieving teenager with a lust for travel and occasional bouts of depression. She wanted to be an actress, she said, but turned to journalism after her father threatened to thwart her in order to protect her from the casting couch. “He would never believe there was an editing couch,” she said, alleging a demand for sex from an editor at a major Jewish publication. She mentioned other people who sabotaged her career or wounded her. It was a theme of her conversation.

“She doesn’t have delusions,” her brother, Michael, said. “She can have strong opinions.”

Friends thought she never got over her father’s disapproval. She got writing assignments from prestigious publications but never turned them into an income of more than $5,000 or $6,000 a year.

Her rent, set at 30 percent of her net income, once dropped to $97 a month.

“I remember almost constant complaining about her father,” said Morton Fleischner, a friend from journalism school who went on to be a producer at ABC News.

Funke traveled and wrote and traveled and wrote. She acquired stuff on her travels and put it in her apartment, and acquired research materials for future trips and put these in her apartment as well. She bought scuba gear from the shop next door. She bought yarn for knitting. In 2004, the building moved to evict her for hoarding, but her parents helped her tidy up.

Bill Lambrecht, 81, a neighbor and friend for more than 30 years, dismissed Funke’s clutter as a harmless eccentricity. “Her apartment was always really messy,” he said. “I’d see pennies on the floor, clothes shoved everywhere. She doesn’t hoard things. She just throws things on the floor.”

Lambrecht accompanied Funke to a court conference in August. He had been a guardian for an older woman once, and did not think Funke needed that level of oversight. At the conference, Kelly called Funke “a brilliant woman,” but he added, on the guardianship question, “That ship has sailed."

The judge offered to address any problems she was having with her new guardian, Charles Barbuti, adding that this was not the time to reopen the case — for that she had to fill out a form called an Order to Show Cause. He had explained that last time, Kelly said. Funke began at the beginning. Digressions opened into other digressions. When Kelly stopped her, she simply started again.

“I’m begging you,” Kelly said. “I have spent more time on your case than on any single other case on my docket.” He ended the conference to hear the next case.

Lambrecht said: “She’s lucid, intelligent and knows how to take care of herself, mostly. She never cuts to the chase on things. But she’s not a bad person in any way. She’s very lonely. She’s what you’d call a noodge.” Outside the courtroom Funke snagged Barbuti.

“I need money to pay for my medication.”

“Send me the bills, I’ll pay them.”

She could not do this, she said, for a simple reason. “I’m not taking the medication."

It was a standoff. Barbuti billed $250 an hour. Sheila O’Brien, the geriatric care manager, stood by. She billed $150 an hour, plus $75 an hour for travel time to and from her office in Connecticut.

The judge ordered home-care aides to tackle Funke’s clutter — twice a week, four hours each time. Funke wanted to hire a cleaning service instead. Often she refused to allow the home attendants into her apartment. This was seen as noncompliance, further grounds to continue guardianship.

“I want to see this work for you, I really do,” Kelly told her. “I know you don’t want this. Help me make it work.”

If you made that call to Adult Protective Services about Funke, did you do the right thing?

The initial intervention brought her back from the edge of malnutrition and dehydration. Kelly stopped the eviction proceedings and ordered help to keep the clutter from returning.

But at what cost?

In Funke’s view, the process was an assault on her liberty — and in one instance, on her person. Before a court hearing last November, when she refused to get out of bed, the guardian, Gil Perez, forced the issue.

What happened is in dispute.

Funke said Perez dragged her out of bed, slammed her head repeatedly against the wall, then dragged her out toward the elevator in her nightgown. At the hearing that day, Kelly noted that she was disheveled and unresponsive. “Ms. Funke,” he said, “you just don’t seem yourself to me today.”

Perez did not respond to requests for comment. At the hearing he told the judge, “Today, getting her to this court was quite an adventure.” Funke said nothing.

Nathan Villada, a paramedic who was helping Funke after her initial crisis, cleaning the apartment and taking her to medical appointments, said Perez was physical but not violent in the way she described. “This was when Phyllis was doing really, really badly mentally,” Villada said. “She was yelling obscenities and it seemed like she was making aggressive movements toward him. So Gil started grabbing her hands. And that just made her more aggressive. Gil pushed her against the bookshelf more as a restraint, not slamming her. My personal preference, I don’t think there’s a necessity to touch someone like that. She started yelling out, ‘Help, help, I’m being raped.’ He pushed her out into the hallway, but he didn’t drag her on the floor.”

Yonge said Funke had called her at the time and told her about the episode, describing it as an “assault.” “She was in tears about it,” Yonge said.

Over time, Funke began to see this encounter as the root of her problems, and all the court’s interventions as more harmful than helpful. If she hadn’t been roughed up, she wouldn’t have been listless in court that day. If she hadn’t been listless, she would have persuaded the judge that she did not need a guardian.

Funke also said that a social worker from Adult Protective Services propositioned her and touched her inappropriately, and that Villada and his girlfriend had stolen from her. Whatever the validity of her charges, the anguish she feels is clearly real.

Barbuti, who succeeded Perez as her guardian, said he had not looked into her charges. That was police work, he said, and he was no longer in that line. (He was a captain in the Bronx until he retired in 2011.) “I can’t subpoena people,” he said. “Interviewing people and giving Miranda warnings are far beyond the ambit of what I can do.” It can all be maddening. Claude Pepper, a congressman from Florida, once called guardianship “the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty.”

One day in her apartment, Funke tried to refuse a scheduled visit from O’Brien and a home attendant. They came up anyway.

Funke treated them with open disdain. The attendant pointed to a creased throw rug on the floor. “We talked about this, Phyllis,” she said. Risk of falls. Funke saw the apartment through different eyes, as a journal of her travels.

“Each rug means something to me,” she said. “Each has a story attached to it.”

Maybe this wasn’t prison, but for Funke, it was four walls and no easy way out. Was there money left in her investment accounts? Even the court didn’t know. Only the guardian had access to her records.

Funke said Barbuti often failed to give her the $150 a week allotted by the court, and that he was late paying bills for her parking garage, car insurance, her phone and internet, and that her supplemental health insurance was expired. In court Barbuti told the judge that he could not pay some of her bills because she refused to provide them to him.

Some days it seemed like she spent more time fighting with Barbuti over her bills than it would take to manage them, and they were still a royal mess, she said.

Barbuti said people had the wrong idea about guardians, that their powers were limited to what the judge gave them. New York also limited runaway fees: if a guardian billed more than $75,000 in a year, he or she could not take any new cases the following year.

“There’s a misconception about guardianship, that somehow or other you become that person’s alter ego,” Barbuti said. “That’s just not the case. All you can do is what the court tells you you can do.” He added: “I like this kind of work. I feel there’s a chance to help somebody and make a difference in their lives.”

If you were Funke, shouldn’t you be allowed to withdraw into the covers if you wanted to? And the clutter in your apartment — couldn’t people understand that a writer needs materials around? Even if she were evicted, she had money to start somewhere else. Courts evict people with lots less.

If you were Kelly, what would you do? Would you want to be the judge who left her vulnerable and unprotected?

Barbuti said the question of guardianship was a complex one.

“People should have the right to make their own decisions, even if you might look at it and I might look at it or a judge might look at it and say that’s not a good decision,” he said. “I don’t think the government should be making decisions like that for people. I think people should be able to make bad decisions. Within bounds.”

What these bounds were, he could not say.

Funke said she just wanted to get on with her life. As she approached 80, she worried that she might spend the rest of her years fighting to get out of guardianship. So she fought harder.

She remained on probation at her building.

By early December she was still writing her Order to Show Cause. It began, “I’m petitioning, very simply, for the return of my life. The chance to hope again, to dream again. And live the years that remain in a fulfilling and fulfilled manner. Too much has already been destroyed — much improperly; possibly illegally. And primarily — carelessly, selfishly and pointlessly.”

Fifteen pages later, it still had a long way to go. She was working on it, she said.