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When Judge Kristen Booth Glen walked into her Manhattan Surrogate's courtroom one day in 2007, she had no idea she was about to challenge the nation's top banks on behalf of tens of thousands of disabled people.
Before her stood lawyer Harvey J. Platt, who was petitioning to become the legal guardian of Mark Christopher Holman, a severely autistic teen who lived in an institution upstate.
Holman had been left an orphan nearly three years earlier after the eccentric millionaire who adopted him passed away. According to doctors, he had the communication skills of a toddler, unable to bathe, dress, or eat by himself.
But before Judge Glen would grant this seemingly perfunctory petition, she had a few questions for Platt.
"How often have you visited Mark Holman?" she asked the lawyer.
"Since his mother died, I have not visited him," said Platt.
"And when you say you haven't visited him since then, how often had you visited him prior to that?"
"I haven't seen him since he was eight or nine," responded the lawyer. "His mother used to bring him to our office with his brother, just to show him my face and so forth and so on, so I haven't seen him probably since 1995 or 1996."
It was around that time that Platt helped Mark's mother, Marie Holman, draft her will and create trusts for him and his older brother. A decade later, when she was dying, Platt promised Marie he'd apply to become Mark's guardian.
"And have you visited the institution which he currently resides in?" Glen asked.
"No, I intend to, but I have not as yet," Platt said, sounding weary. "I don't think even a visit has much significance anyway. He's totally nonverbal—he's never spoken a word. He's potentially aggressive."
This didn't sit well with Judge Glen. When it came to signing away the rights of disabled people to guardians, she was perhaps the most cautious judge in New York. But what came next would floor her.
Platt informed her that Mark's trust had reached nearly $3 million. But while his trustees—Platt and JP Morgan Chase—had collected thousands of dollars in commissions, they hadn't spent a penny on Mark. Medicaid covered his basic care at the institution upstate, but neither the lawyer nor the bank had considered how his mammoth trust might further aid his quality of life.
"Whether there is a cure for his autism or not, the question is: Are there things that could make his life more pleasurable or fulfilling?" Glen asked. "If somebody took him out to the movies once a week, or somebody took him out to lunch, or what he really likes to do is watch football—I don't know. There's always something that could make people happier, and I don't think you could know that without really visiting him and knowing what's going on."
As she spoke, Glen could not have predicted that the case would become a five-year obsession for her. Or that she was about to disrupt a lucrative trade in which some trustees sponge commissions off wealthy disabled people—while doing little to enhance their care.
"They're lazy pieces of shit," says Glen. "It's a business. They collect their commissions, and they think their only responsibility is to invest the money and keep the money safe with no regard for the beneficiary."
Special-needs trusts hold billions of dollars around the country. The funds are set up to benefit people with chronic disabilities, while typically allowing them to keep government benefits like Medicaid. But there's little oversight to ensure that trustees are spending the money properly—or even spending it at all.
"We see a lot of trusts that sit dormant," says Edward Wilcenski, a New York lawyer and former president of the Special Needs Alliance, a national network of attorneys. "It's not uncommon that over a period of three, five, 10 years we don't see distributions made, but we see the calculation of commissions."
The trusts number in the tens of thousands and are held by a long list of banks. Wells Fargo, for example, has more than 1,000 trusts with a total value of more than $1 billion. And as more people with disabilities live longer, their value continues to grow.
They're usually funded with an inheritance or court settlement. But in order for beneficiaries to stay Medicaid-eligible in New York, trustees must have absolute discretion over their money.
The problem: There are virtually no rules governing whether trustees are spending in the best interests of their clients. Worse, the courts can only review these cases if someone complains.
"If someone is severely disabled with an institutional trustee, that person's not going to come to court," Glen says. "There's nobody who will, and that's what's really scary about it."
Marie Holman, Mark's adoptive mother, grew up on a muddy dairy farm in Jefferson, Ohio. The family was poor, even by Great Depression standards, recalls niece Sharon Awad. Marie and 11 siblings shared a farmhouse without plumbing.
Marie looks tall and thin in family photos, with sunny blond hair and a cute bulb nose. She kept her fingernails long and red, even while she helped milk the cows.