'You need to get him out of there': Vermont man with autism lived in 6 facilities in one year

BURLINGTON, Vt. — It was Christmas, and Linda Luxenberg couldn't wait to spend it with her son Travis in his new home. She had purchased a log cabin in Waitsfield, Vermont and called it Nice Place. There, Linda Luxenberg hoped, her son, who has severe autism, would be safe from the chaos that ran his life for years.

"This boy is going to have Christmas at Nice Place, with his sisters and his mom," she told the Burlington Free Press, part of the USA TODAY Network. She furnished the home and bought her son new clothes. "Trav' was in heaven." But what followed was less than idyllic. 

Linda and Travis Luxenberg were the subjects of a 2019 Free Press series that documented their struggle to find adequate housing and programming. Travis Luxenberg, 33, was in a dangerous home care program with caregivers who could not — or would not — stop him from destructive behaviors or make sure he didn't wander on his own.

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As reporting for that series was underway, Linda Luxenberg learned that the state of Vermont had approved over $500,000 for a new program with Upper Valley Services, a nonprofit service agency accredited by the state. It was to be designed specifically around his needs, and would provide at least two caregivers at all times, an autism specialist and improved security measures. 

The Free Press series ended with Linda Luxenburg hopeful that the new program would support her son's needs, but that optimism was short-lived.

Travis Luxenberg's program fell apart within months, despite a nearly 270% increase in state and federal funding. The program failed, Linda Luxenberg said, because of a lack of programming devised by an autism expert and the inability to find staff to implement it.

Including Nice Place, Travis Luxenberg has lived in six different facilities in one year.

Neighbors who witnessed the events last spring, autism advocates and friends of Linda Luxenberg have flooded local and national representatives, as well as administrators in the Department of Disabilities, Aging and Independent Living, with correspondence advocating for Travis Luxenberg's safety.

Beverly Frost, a mother of an adult son with autism, has spent "untold hours" over the last two years advocating for Travis Luxenberg. She stated in a letter to a state senator dated November 9, "His situation is dire and getting worse by the day."

The Department of Disabilities, Aging and Independent Living declined to comment on the specifics of Travis Luxenberg's case.

Bill Ashe, who was executive director when Upper Valley Services was running Luxenberg's program in Waitsfield, has since retired. Ashe referred all questions about Luxenberg to the current executive director, Gloria Quinn, who declined to comment.

Program impossible to staff, worker cites dangers

Travis Luxenberg's program fell apart, his mother said, in large part because they couldn't find a program director with expertise.They couldn't maintain staff who showed up for work — and didn't run away from her son when he was struggling.

Warren Uzzle was building a handrail at Nice Place when a rock flew within a few feet of his head, hurtling toward a window. Moments later, Travis Luxenberg jumped through the shattered window, Uzzle remembered, and landed on shards of glass outside.

Uzzle was initially hired by Linda Luxenberg, to make safety improvements to a home she purchased for Travis and his support workers. As it happened, Uzzle had a background in special education. Before starting a small construction business in retirement, Uzzle worked as a special education administrator. He offered to work with Travis as a staff member and was hired by Upper Valley Services in April 2020.

Within two weeks, he left the job. “I called Linda, and I said, ‘Linda, there is no program, and you need to get him out of there,’” Uzzle said. 

Uzzle described an uncoordinated and chaotic environment with little to no interaction with supervisory staff at Upper Valley Services. The support workers, he said, struggled to deal with the complexity of Luxenberg’s needs. 

“I decided it was unsafe to be there for Travis, for the staff and for me.”

While Uzzle was still working in the home as a contractor, he saw staff members fall backward off the porch onto ice. He suggested Upper Valley Services build a railing, but they never followed through.

“I did an estimate for them and everything,” he said. “I suggested improving the steps because they were poorly constructed, that was never followed up on either.”

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“There is no staff communication or meetings, ever,” Uzzle said. By the time he left, he had been working at Nice Place in some capacity for over three months — almost the entire time the Upper Valley Services program was operational. Staff didn’t communicate with each other when they changed shifts about Luxenberg’s mood or behavior that day, Uzzle said. Some staff simply observed the home from afar, he said, and walked off at the end of the shift.

Crises led to loss of guardianship, temporary stay in trailer

Travis Luxenberg experienced crisis after crisis in the spring of 2020. He started breaking the windows of the house and smashing the workers' car windshields on May 14, police records show. A staff member tried to "wrestle him back into the house," after which a neighbor fired a gun into the air in an attempt to stop the skirmish outside.

"The healthcare workers advised that this has been happening lately and it does not appear safe for the community," a state trooper wrote.

Travis Luxenberg had a significant episode four days later on May 18, when police reported he was "out of control at his residence." First responders brought him to Dartmouth Hitchock Medical Center in New Hampshire, records show, where he stayed for three months.  

Then, COVID hit. The hospital needed him to leave, and Linda Luxenberg and the state’s disability services department couldn’t come to an agreement on where he would go, she said. The state wanted to place him in temporary crisis housing — a trailer in Wardsboro, Vermont run by the Vermont Crisis Intervention Network — a plan Linda refused because she believed it would end poorly for her son.

Dartmouth Hitchcock petitioned to have Linda Luxenberg's guardianship removed in August, and Travis Luxenberg was moved to the trailer.

An attorney for the Department of Disabilities, Aging and Independent Living said the department can’t comment on specific cases, but did cite the part of the law that was used to justify the removal of her guardianship: a “change in the capacity or suitability of the guardian for carrying out his or her powers and duties."

"It was like they put a knife through my heart,” Linda Luxenberg said. Twenty-five percent of Vermonters with disabilities who responded to the 2018-19 National Core Indicators survey had a state-appointed guardian, compared to 9% nationally.

The Vermont Crisis Intervention Network is an Upper Valley Services program that offers training, consultation and crisis housing, according to Gloria Quinn, executive director of Upper Valley Services. About 35 people with disabilities stay in the program's two trailers each year, with an average stay of about 17 days. Intended for short-term stays for Vermonters with disabilities, the trailers house one person at a time, with one staff member supporting them.

A photograph supplied by Linda Luxenberg of the trailer where Travis Luxenberg was held shows a red, single-wide trailer, the exterior of which appears to be deteriorating. 

"The focus is on a safe interior suitable for the needs of each person," Quinn wrote in a letter to the Free Press. "The exterior of some of the residences may appear in a state of disrepair, but (Upper Valley Services) and state focus is on the suitability of the location and the safety, security and suitability of the interior space."

Within 72 hours, Travis Luxenberg had a "significant episode" at the trailer that resulted in injury to staff, according to a behavior support plan written by staff at Washington County Mental Health Services.

Concerns about instability, over-medication

Since Linda Luxenberg lost her guardianship, her son has been moved five times, including stays at Dartmouth Hitchcock Medical Center, the trailer in Wardsboro, a “Hyde park facility” operated by the Lamoille County Sheriff's Department and Central Vermont Medical Center according to the behavioral support plan. He was seen briefly at Brattleboro Memorial Hospital in Vermont after an incident at the Sheriff's facility, but not admitted. 

As of the publication of this article, Travis Luxenberg is living in a facility in Marshfield, Vermont in a program overseen by Washington County Mental Health Services. Linda Luxenberg, who believes the care is inadequate and that her son is being over-medicated, is mounting a legal effort to regain guardianship that will be heard by the probate court on December 18.

While unable to comment on specific clients, Julie Martin, the director of developmental services for Washington County Mental Health Services said the agency's "specialized treatment program is designed, developed and implemented with the full collaboration" of the Department of Disabilities, Aging and Independent Living, the client's guardian and "experts both within and outside our organization." 

Washington County Mental Health Services has "worked tirelessly" to develop a program that meets Travis Luxenberg's needs, they wrote in a November 10 court filing. Medical staff did increase Luxenberg's medication, they noted, but the change is intended to be "short term and methodically reduced."

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"Although Travis's team has noticed bouts of lethargic behavior including long periods of sleep, slower speech, tremors, and impacted gross-motor issues ('shuffling' instead of walking)," Washington County Mental Health Services wrote in an affidavit, "his team is diligently and constantly collaborating" with medical professionals to decrease dosages.

Travis Luxenberg's time at the Marshfield facility has "constituted the longest stretch of stability that (he) has enjoyed at least since February 2020,"  according to a court filing by the state. Travis Luxenberg has demonstrated "more safe behaviors and healthy self-determination than he has for at least eight months."

Follow Isaac Fornarola on Twitter: @isaacforn