HEALTH, LAMOILLE COUNTY, WASHINGTON COUNTY
An extraordinary Vermont custody battle highlights an ‘untenable’ system of care
By Peter D’Auria January 18, 2023, 12:52 pm
In the hills outside Marshfield, in an unassuming single-story house, a 35-year-old man is watched by cameras.
Named in federal court documents as John Doe, the man has multiple neurological disorders and requires round-the-clock care — at a cost approaching a million dollars a year in public funds. The low-slung, vinyl-sided home is staffed with two full-time caretakers and video cameras, except for the bedroom and bathroom. In the event the man has a violent behavioral episode, caretakers can watch from a secure location on the site.
That house also plays a key role in an unusual, drawn-out custody battle. For years, family members, state officials and nonprofits have sparred over Doe’s guardianship — a conflict that has produced thousands of pages of court records, sparked a federal lawsuit, and involved bitter allegations of negligence and misconduct.
Linda Luxenberg, Doe’s mother and guardian, says the state of Vermont has failed her son. She sees the enormously expensive Marshfield placement, which leaves her son isolated from friends and family, as the latest in a long series of dangerous and inadequate living situations.
“I feel very sad, and I’m definitely traumatized by it all,” said Luxenberg. “And my son is certainly severely traumatized. And I don’t know how it’s gonna go.”
But in probate court filings, state officials and nonprofit caretakers told a different story. It was Luxenberg who was jeopardizing her son’s health and safety, they argued — not them.
Who is John Doe?
The man whose care is at the center of the dispute is, in some ways, like many other millennials in Vermont. He likes to ski, hike, bicycle and swim, and he enjoys watching movies, listening to music and visiting the library, according to a 2020 Behavior Support Plan, a document drafted by care staff outlining procedures for Doe’s supervision.
But Doe also presents unusual challenges. He has been diagnosed with autism and Landau-Kleffner syndrome, a rare neurological condition that causes people to lose speaking and comprehension functions.
“He will speak rapidly and with a staccato dictation, has automatic scripts he repeatedly says, is able to write short sentences and uses vocalizations and body language to communicate,” according to the Behavior Support Plan.
The plan notes that the “reliability of verbal communication is undetermined at this time.”
That has led to one of the thorniest problems of his case: Amid a tumultuous back-and-forth over his guardianship, officials have struggled to understand what Doe wants.
With Luxenberg’s consent, VTDigger visited Doe at the Marshfield home last fall. Because of his difficulty communicating, a reporter was unable to interview Doe, and Washington County Mental Health staff at the house declined to be interviewed.
VTDigger is not using Doe’s real name upon the request of his mother, who cited concerns about his privacy and wellbeing. He is named in previous media reports and probate court documents.
An $800,000 budget
Adult Vermonters with developmental disabilities, like Doe, can receive publicly funded services through Vermont’s Department of Disabilities, Aging, and Independent Living, often known as DAIL.
Those services are generally handled by Vermont’s “designated agencies,” local nonprofits that work with the state to oversee specific geographic areas. In Doe’s case, that designated agency was Washington County Mental Health.
“Staffed living” placements, in which one or two clients live in a home with 24-hour staffing, cost an average of roughly $140,000 per person per year in state and federal dollars, according to DAIL’s 2022 annual report, which covers fiscal year 2021.
Doe’s case costs more than five times that. Caretakers have budgeted $800,000 a year for him, DAIL officials acknowledged in court documents. Attorneys for Luxenberg estimate that Doe has “likely one of the highest support budgets in Vermont,” a claim that state officials declined to refute.
According to a financial document Luxenberg provided to VTDigger, Doe’s housing and care has cost Washington County Mental Health over $1 million a year. (Washington County Mental Health declined to discuss the document or those figures.)
Caring for Doe is not easy, especially as he can become aggressive and violent. When “escalated,” he has harmed himself and others, broken windows and car windshields, and attempted to run away from home, according to probate court records.
The 2020 Behavior Support Plan notes that he has a “fascination with fire in (an) unsafe way” and enjoys burning pieces of paper and plastic.
“He has a complicated profile and a long learning history of maladaptive behaviors that are strongly embedded in his repertoire and continue to be reinforced when the proper interventions are not in place,” administrators at Melmark, a nonprofit that serves people with autism and developmental disabilities, wrote in a 2021 evaluation completed at the request of Doe’s family.
‘So many different problems’
Doe’s stay in Marshfield comes amid what mental health advocates call a “crisis” in Vermont’s system for caring for adults with disabilities.
Hamstrung by chronic housing and staffing shortages — both of which have been exacerbated by the Covid-19 pandemic — the state’s nonprofit designated mental health agencies have struggled to care for their clients.
“The pandemic has resulted in a serious workforce shortage, impacting all sectors of business, but hitting (developmental disability) service providers particularly hard,” DAIL’s Developmental Disabilities Services Division said in its most recent annual report. “Providers are reporting vacancy rates of direct support workers in the range of 30-60%.”
Washington County Mental Health has used temporary staff from the Vermont Crisis Intervention Network to manage Doe’s Marshfield home, officials acknowledged in court filings.
Lindsey Owen, the executive director of Disability Rights Vermont, described the state’s system for caring for Vermonters with disabilities as “untenable.”
“Really, we’re not doing right by Vermont residents,” Owen said.
In the past six years, two adults with autism have died in Vermont in residential care settings. In 2017, Jordan Machia, a 22-year old man, died of bronchitis complications while living at a house under the care of Lamoille County Mental Health. A report by Disability Rights Vermont found that Machia’s caretaker did not notify superiors of his illness, failed to record medical information, and was not always “dutiful in making and/or keeping doctor’s appointments for Jordan when needed.”
In 2019, according to news reports, Scott Fleurrey, a 55-year-old man, drowned in a pond while living in a Morrisville house managed by Upper Valley Services, a designated agency overseeing Orange County.
The Vermont Attorney General’s office reached a settlement with Upper Valley Services in December over allegations of neglect and the hiring of a staff member who was listed on the Adult Abuse Registry. The settlement does not name the people involved, but the allegations partially center on an Upper Valley Services client who drowned in a pond in 2019.
“There’s just so many different problems,” said Kirsten Murphy, the executive director of the Vermont Developmental Disabilities Council. “And it’s not anyone’s fault, or bad actors. It’s just that it’s been an under-resourced system for a very long time. It doesn’t have the quality oversight mechanisms it should. It doesn’t have enough checks and balances.”
Vermont is not in compliance with 2014 federal rules intended to prevent conflicts of interest in the care of people with disabilities, according to state officials. Those rules stipulate that patients’ case managers should not work for the same entity that provides services — something that happens frequently in Vermont.
Dylan Frazer, the deputy director of Medicare policy with DAIL, said that the state has submitted a corrective plan to federal authorities and has been in communication with officials about it.
“We do expect to have that plan approved in the near future here,” he said.
‘Dark Ages’
Before 2019, Doe lived in the care of his father, Luxenberg’s ex-husband, Roland Luxenberg, for a decade. In April 2018, an incident took place that would later make the news: Roland Luxenberg had given a caretaker permission to leave the house for 10 hours, during which Doe wandered out of the house in near-freezing weather, according to reporting by the Burlington Free Press.
That incident landed Roland Luxenberg on the state’s Adult Abuse Registry. But a year later, Roland Luxenberg — and the case manager who left Doe alone — remained in charge of his care.
In a phone interview, Roland Luxenberg confirmed the episode, but he argued that his son’s history defies simple moral judgments.
It’s “not a black hat and a white hat situation,” he said. “You know, it’s complicated.”
Roland Luxenberg sees his son for about an hour once a week. The two often go hiking or shopping together, he said. The Marshfield house, Roland Luxenberg believes, is “a nice setup.”
“Vermont’s not perfect, but I get the feeling that it’s at least average or better in serving this population,” he said.
That view is completely in opposition to that of his ex-wife: Linda Luxenberg sees her son as the victim of a long series of failures by those charged with his care.
Since leaving his father’s care in 2019, Doe has continued to struggle. Since then, Doe has bounced from place to place, often moving after having an episode of violence.
He stayed in a home in Waitsfield, hospital emergency rooms, a facility operated — and guarded — by the Lamoille County Sheriff, and a crisis bed in a Wardsboro trailer, before finally landing in the Marshfield house in September 2020, according to interviews, court documents, and news reports.
Linda Luxenberg and her daughter Kelcey Luxenberg, Doe’s sister and co-guardian, believe the current placement — like previous ones — is not working. Doe, they say, is isolated from friends and family, has inadequate programming, and does not have access to the specialists and care that he needs.
Kelcey Luxenberg, who lives in the Netherlands, sees her brother infrequently. Their mother has taken over much of the planning around Doe’s care.
“These people don’t really know the (John Doe) that we know,” Kelcey Luxenberg said in an interview. In Marshfield, she said, her brother “never felt comfortable in the home.”
In 2021, Melmark evaluators said that they could not verify that Doe’s behavioral plans were “being implemented with fidelity.” Doe had no organized schedule of activities and “reportedly does not shower regularly,” the evaluators wrote.
Linda Luxenberg and her supporters have also pointed to mysterious injuries that they say Doe has sustained in Marshfield. During a 2021 visit to his mother’s home in Stowe, Doe arrived in a car naked from the waist down with dried blood on his head, according to Rachel Hickory, Doe’s guardian ad litem, a court-appointed advocate.
“(Doe) has been neglected — who allows someone not to bathe for months,” Hickory wrote to court officials in October 2021. “Why was (Doe) naked from the waist down upon his arrival in Stowe. Why didn’t the staff get involved?”
The Marshfield placement also did not prevent violent behavioral episodes. Many of the windows at the home were boarded up after Doe broke them, evaluators noted, and, at times, he still needed to go to the emergency department after injuring himself.
Linda Luxenberg blames those behaviors on the agencies tasked with caring for him — and his isolation in Marshfield. In interviews, she noted repeatedly that she has a Master’s degree in special education with a focus in autism, and that she worked as a behavioral interventionist in Massachusetts.
“What they’re doing in Marshfield is Dark Ages,” she said. “Dark Ages.”
She wants to move her son to Osprey Village, a nonprofit community for people with developmental disabilities in South Carolina, where, she said, she is buying a house for her son to live in.
The question, however, is whether she can secure funding to pay for his care there.
It’s unclear whether South Carolina would approve Doe for public dollars — or how long such a process would take. And last summer, according to court documents, state officials rejected Linda Luxenberg’s bid for Vermont-based funds to pay for her son’s placement in South Carolina. She is currently appealing that decision.
In October, Linda Luxenberg filed a federal lawsuit in U.S. District Court in Burlington, accusing state officials and caretakers of negligence and “failure to provide adequate services, supports, training, (and) access to specialists.”
The lawsuit seeks an unspecified amount of damages, as well as a ruling that state officials will fund an “appropriate placement identified and developed with guidance from Plaintiff’s guardians.”
‘Disturbing conduct’
Citing privacy concerns, state officials and administrators with Washington County Mental Health said they could not discuss Doe’s case.
But in court filings, they lay out reasons why Doe should be under the guardianship of state officials — not the Luxenbergs.
In a November court filing, attorneys for state and nonprofit officials argued that Linda Luxenberg has shown “disturbing conduct” and a “lack of concern for (Doe’s) interests.”
After a visit to her home in Stowe, Linda Luxenberg sent her son back to Marshfield with messages written on photographs: “scripts … designed to make him distrust” his caretakers, attorneys for DAIL alleged in October.
Her “escalating hostility” and “oppositional approach” had caused multiple staff members to resign, and led a medical provider to “formally terminate the doctor/patient relationship,” attorneys for DAIL wrote.
A year earlier, Washington County Mental Health had made similar arguments: Linda Luxenberg repeatedly and falsely accused its staff of abuse, neglect and sexual misconduct toward her son, the agency said in a June 2021 filing.
She also made “repeated and continuing efforts” to have (Doe) taken to hospital emergency departments “against his will and wishes” — even though, the agency argued, those visits were apparently unnecessary.
Doe’s stay in Marshfield “has been a relatively long period of residential stability in Respondent’s life, and it is no coincidence that Ms. Luxenberg was not his guardian for most of that time,” attorneys for DAIL wrote in an October court filing.
Mary Moulton, the executive director of Washington County Mental Health, declined in an interview to discuss Doe’s case. But she said that she had not seen a dispute like the one involving Doe in “a long, long time.”
“I’m going to get on a soapbox here for a second — we run a really good agency,” Moulton said, adding, “I get very emotional because we have staff who work so hard. And it reflects on them when things hit the press. I wouldn’t talk to you today if it weren’t for them.”
The conflict has led to a prolonged and unusual tug-of-war over Doe’s guardianship.
Since 2020, guardianship has bounced between his family — his mother; his sister Kelcey; an aunt, Kim Kindig — and DAIL.
Currently, Linda and Kelcey Luxenberg are Doe’s legal guardians. (In early 2022, Kindig asked for her guardianship to be removed, citing unspecified “conflict” with her sister and niece.)
In October, attorneys for DAIL filed an emergency motion asking the probate court judge to remove Doe’s mother and sister and reappoint the agency as his guardian.
DAIL officials said they could not discuss any specific case or client.
But in an email, Monica White, the commissioner of DAIL, pointed to a Vermont statute spelling out the possible grounds for changing or terminating a person’s guardianship. Those grounds could include “the failure of the guardian to act in accord with an order of the court” and “a change in the capacity or suitability of the guardian for carrying out his or her powers and duties.”
In March 2022, White testified in probate court that Doe’s case was taking up a disproportionate amount of time, according to a judge’s summary of that testimony. Out of all of DAIL’s roughly 5,600 clients, she said, she was more involved in Doe’s case than any other.
Asked about the allegations from DAIL and Washington County Mental Health, Linda Luxenberg called it “gaslighting” and “slander.” She sees it as retaliation for her advocacy on behalf of her son.
“I think she was acting how most parents would act,” Kelcey Luxenberg said of her mother.
‘Good faith’
For the probate court, it has been difficult to answer what might be the most fundamental question of the case: What does Doe want?
In a June 2022 ruling, Washington County Probate Court Judge Jeffrey Kilgore wrote that he struggled to interpret Doe’s desires.
“The Court is not willing to say that (Doe’s) answers to questions are always consistent,” Kilgore wrote, adding, “insufficient evidence was presented for the Court to conclude it was more likely than not that (he) had a preference.”
In late October, the parties agreed in federal court to “work in good faith” to develop a transition plan for Doe.
In late November, attorneys from both sides agreed that Lamoille County Mental Health would take over Doe’s case from Washington County Mental Health. Washington County Mental Health had made the “difficult decision” to stop providing services, the agency wrote in a November probate court filing.
Lamoille County Mental Health staff were expected to take over his care in December, although it’s unclear how far along that transition is — or whether it can assuage the Luxenbergs’ concerns.
Michael Hartman, the CEO of Lamoille County Mental Health, said in an email that the nonprofit does “not confirm, deny, or release any information” about its services.
DAIL’s bid for guardianship in probate court has been paused, according to a Dec. 29 letter from Kilgore, while the federal case proceeds. Kilgore noted that he might still consider transferring Doe’s guardianship to South Carolina.
It’s unclear how long Doe will be living in the Marshfield home. Officials have “no estimated timeframe for (Lamoille County Mental Health) to provide a new home to Doe,” the November status report reads.
But it appears clear that the status quo cannot continue, as Kilgore noted in a June ruling.
“(Doe’s) stay in Marshfield has not been easy for any of the parties to these proceedings,” he wrote. “There is little that the parties agree about.”