Love, Dad: A Father’s Story

— From Frank Cioffi’s letter to his daughter, Alexa Rose, on the 10th anniversary of her death

“Marching band!” Frankie Cioffi boomed, his voice echoing through the lobby of Hotel Vermont in Burlington. The hotel staff paid no mind to the outburst, as Frankie and his grandfather, Frank Cioffi, are regulars for brunch most weekends at the hotel’s upscale restaurant.

Frankie, who is 12 and has autism, is verbal but not conversational. He and Cioffi (pronounced “coffee”) waited on a couch for their table, dressed in matching head-to-toe black, save for Cioffi’s straw fedora and Frankie’s wispy blond ponytail.

Frankie gave his grandfather a bear hug, pressing his lips hard into Cioffi’s cheek and smothering his face in kisses. “Papa,” as Frankie calls him, seemed to bask in the exuberant display of affection.

“Who’s the most beautiful boy in the whole world?” Cioffi asked.

“Me!” Frankie answered with a gleeful high-pitched howl, his eyes scanning the ceiling.

“Marching band!” he blurted again. Days earlier, Cioffi promised to take Frankie to a Memorial Day parade, same as last year.

“That’s his mission this weekend,” Cioffi said. “And he’s going to ride me on it until we’ve accomplished it.”

Without warning, the boy leaped into Cioffi’s lap, landing on his slightly built grandfather with enough force to knock the older man’s hat to the floor. Frankie, at six feet tall and nearly 180 pounds, already dwarfs his grandfather. (One of Frankie’s physicians predicted he will reach at least six foot five.) Cioffi reacted to the love fest with a smile that seems set permanently on bemused.

Usually a gentle giant, Frankie can be a handful. At 13 months, he was kicked out of daycare for biting another child. “I didn’t want him traumatized, so I threw him a graduation party,” Cioffi recalled, laughing.

As they waited for a table, Frankie pulsed with energy, one hand rhythmically flapping a short strip of leather as part of a “stimming” routine that he uses to calm himself. Minutes later, he fell suddenly still when he spotted the necklace around his grandfather’s neck — “Mama’s chain,” he calls it. Frankie gently fingered the pendant, which holds ashes of Alexa Rose, Cioffi’s daughter. The last time Frankie saw his mother, he was 2.

Alexa Rose died on April 9, 2016, the result of years of opioid abuse. Her death not only instantly transformed Frankie’s life but Cioffi’s, as well. Soon after, he announced to his then-wife that he planned to formally adopt Frankie as his son — and in doing so swapped the delights of a doting grandfather for the endless responsibilities of a parent. (Frankie’s biological father hasn’t been part of the boy’s life.) Cioffi has never regretted his decision, even though it cost him his second marriage and likely erased any fantasies of a relaxing retirement.

Two months later, the second shoe dropped: Doctors diagnosed Frankie with autism, a condition that can be challenging to manage under the best of circumstances. It would be up to Cioffi, then 61, unmarried and working as president of the Greater Burlington Industrial Corporation, to ensure the boy’s care beyond childhood.

Cioffi has never regretted his decision to adopt Frankie, even though it cost him his marriage and likely erased any fantasies of a relaxing retirement.

Cioffi soon grasped the magnitude of the diagnosis. If Frankie hears a loud noise, he may cover his ears in panic — or bolt into traffic. He cannot bathe, dress or use the toilet by himself. Frankie has to be sedated in a hospital just to get his teeth cleaned. While Cioffi hasn’t flinched in the face of Frankie’s need for around-the-clock care, the question of what will happen to the boy when he’s gone has kept him awake at night.

Cioffi is acutely aware that time is not on his side. He and his first wife, Jovana Guarino, Frankie’s grandmother, are both 71. Divorced for more than 30 years, they co-parent the boy from separate condos in the same South Burlington complex. They know that Frankie will never live independently without a caregiver — and that they won’t be around forever. By the time Frankie reaches his mid-twenties, his grandparents will be in their eighties.

The prospects for long-term care for adults with profound autism have improved since the days when Vermonters like Frankie were segregated from society and warehoused in institutions, often in abysmal conditions. Even today, though, the options are limited.

Vermont has no facilities for adults with profound autism or Down syndrome who cannot live alone. They either live with their families or shared-living providers, caregivers who take people with disabilities into their homes. Some 600 Vermont families face the same heart-wrenching problem as Cioffi: how to care for a loved one with an intellectual or developmental disability when their state services end at age 22.

As Cioffi anguished over Frankie’s future, he followed the same networking instincts that have guided him for decades as a mover and shaker in Vermont, a troubleshooter trusted by governors, policy makers, and leaders of the state’s largest businesses and organizations. His search led him to Hannah Schwartz and an endeavor called Riverflow Community, a shared-living arrangement that she was starting in Monkton. Riverflow is redefining the lives of adults with developmental and intellectual disabilities — or, as its caregivers refer to them, “friends.”

Cioffi, a master at making deals and friends, was all in. He saw in the nascent project a way to provide Frankie with an eventual home as a grown-up and to be part of a wider effort to help dozens more Vermonters like him. Through his adopted son, Cioffi had found something new and important to fix. Said Alex Demoly, vice president and Cioffi’s right-hand man at the economic development nonprofit, “Frankie is what gets him up in the morning and keeps him going.”

“‘Sesame Street’ is made possible, in part, by the Corporation for Public Broadcasting and viewers like you,” Frankie said, unprompted, parroting the cadence and intonation of a PBS voice-over. Frankie was “scripting,” Cioffi explained — repeating words and phrases he’s heard in movies, TV shows, even past conversations. Cioffi was careful not to laugh because it upsets the boy.

Autism is a complex and lifelong neurological condition that affects how a person communicates, learns, interacts and behaves. Its symptoms and severity can vary greatly. People with autism may struggle to pick up social cues, have difficulty maintaining conversations or be completely nonverbal. They may rely on rigid routines, order and repetition, or develop intensely focused interests. Some people with autism become artists, doctors, mathematicians and business leaders. Others, like Frankie, are unlikely to ever live independently. Until he adopted Frankie, Cioffi’s only exposure to the condition was seeing Rain Man, the 1988 movie starring Dustin Hoffman as an autistic savant.

“I didn’t know a thing about autism,” Cioffi recalled. “I thought you take a pill for it, and you’re OK.” Cioffi’s father assured him that the boy would outgrow it.

I didn’t know a thing about autism. I thought you take a pill for it, and you’re OK.

Frank cioffi

At school and during summers, Frankie has personal care assistants to help with routine daily tasks such as bathing, dressing and eating. But three nights a week and most weekends, such as this one, Cioffi is on his own with Frankie. When a waiter arrived with the boy’s breakfast — blueberry pancakes, bacon and toast — Cioffi cut it up into bite-size portions. Frankie snatched the bacon and inhaled it, licked the plate clean, then scarfed down his toast before turning his gaze to Cioffi’s potatoes.

Cioffi had barely touched his own food by the time the bill arrived, but he shrugged it off. He repeated the day’s schedule for Frankie to confirm the routine that the child expected: First, they would visit the Marcelle Melosira, a University of Vermont research vessel that’s docked at the ECHO Leahy Center for Lake Champlain. Next, they would stop to look at the moose mural on the side of the ECHO building, then drive to a beach in the South End to see the ducks before returning to Cioffi’s condo.

Frankie had never been on a boat until three years ago, when former senator Patrick Leahy and his wife, Marcelle, for whom the vessel is named, heard from Cioffi how much Frankie loved the boat and invited him aboard. Cioffi’s late parents were longtime friends of the couple from Patrick Leahy’s days as Chittenden County state’s attorney in the 1960s and early ’70s. Visiting the “Marcelle boat,” as Frankie calls it, has since become one of his favorite activities.

On the drive there, the nursery rhyme “This Old Man” played over and over on the car stereo, while Frankie sat in the back seat watching Despicable Me in Spanish on his iPad, rewinding and fast-forwarding rapidly through the film. Occasionally, he stuck one end of the tablet in his mouth to allow the sound to reverberate in his head.

At ECHO, Cioffi rolled down the window so that Frankie could look at the boat. Seconds later the boy announced, “Window up,” and Cioffi drove off. After similarly perfunctory visits to the moose mural and the ducks, Cioffi began a circuitous route home.

Autism affects Frankie’s social and communication skills but not his intelligence. Frankie never looked up from the iPad as he rode but always seemed to know where he was. He called out familiar landmarks, such as “Papa’s office” on lower Main Street or his pediatrician’s house on South Union Street, as if following a mental map.

Back at the condo, Frankie lay down on a bed in his playroom, absorbed in his video, his toys neatly arranged beside him. The condo was set up primarily to accommodate Frankie’s needs. Cioffi still owns his house in St. Albans, called the Hill Farm, where Alexa died, but Frankie won’t enter some of the rooms there.

“Sweetheart, do you want privacy?” Cioffi asked. Frankie said nothing. “Yell to me when you want to go to the bathroom.”

“This is what I do all weekend,” Cioffi explained, neither bragging nor complaining. “I take showers at midnight. I work when he’s sleeping. But when he’s up, I’m on.”

Unlike Cioffi, Guarino said she knew from the time Frankie was six months old that the child was neurodivergent, meaning that he learns, processes and communicates differently than what society deems “normal.” It was little things, she said. Frankie didn’t make eye contact as a baby and was slow to raise his head. When she picked him up, his body creaked like an old man’s. (Frankie has joint hypermobility, also known as being double-jointed.) In daycare, she watched him scan the room methodically from floor to ceiling, as if memorizing every detail.

Yet she also saw flashes of brilliance. At 18 months, Frankie would watch runners on the bike path behind Guarino’s condo and chase after the ones wearing colorful sneakers. As the runners rounded a bend and disappeared from view, rather than running faster to catch up, Frankie backed up and stared through the trees, triangulating to the spot ahead where the runner would reappear.

Cioffi’s sister Carol Spillane remembers when Frankie was 2 and Guarino claimed he could read. His great-aunt was skeptical, given the boy’s age. But when they were out walking together, Frankie stopped at a road sign and read every letter out loud. That was amazing, Spillane remembers thinking.

Madeline Nemeroff, who worked as Frankie’s aide from 2021 to 2025 while she was a nursing student at UVM, remembers sitting at the dinner table with him while checking her grades on her laptop. Once, when she got a bad grade and was feeling down about it, Frankie “reached across the table and grabbed my hand,” she said. “I never said a thing. He picks up on everything.”

At Guarino’s condo, where Frankie spends several weeknights, the boy experiences a very different parenting style than Cioffi’s. Guarino, whom Frankie calls “Nona,” plays Bach and Vivaldi for Frankie, lets him paint and sit outdoors for hours listening to the birds. Four days a week, she brings him to the gym to work out with a trainer. But from the moment he walks into the house, his electronic devices are turned off.

“I’m the disciplinarian. I am the one who sets the parameters,” she said. “When he comes here, he’s in the army.”

Guarino acknowledges that Frankie will likely never live independently or get married. On the plus side, she figures, he probably will never smoke, drink, run with the wrong crowd. Or do drugs.

The best part about parenting Frankie? Guarino didn’t hesitate.

“He looks exactly like my daughter,” she said.

Alexa Rose was born to Cioffi and Guarino on November 21, 1985, three years after their son, Mike. She was a “pretty normal kid,” Cioffi recalled, a member of swim and basketball teams and initially not much of a partier. Cioffi, a workaholic known for putting in 16-hour days, somehow found time for his kids, taking them hiking, camping and skiing, according to Guarino and his siblings. After Alexa graduated from South Burlington High School, she spent a semester at Johnson State College (now Vermont State University—Johnson) before dropping out.

Cioffi said he was oblivious to her substance abuse until Christmas Day 2012, when he gave each of his kids $800, and Mike’s cash went missing. Soon after, more money disappeared from Cioffi’s parents’ home. When one of the grandchildren set up a hidden camera in their grandparents’ house, Alexa was caught stealing. Baffled as to why his daughter, then 26, needed money, Cioffi sat her down, and she came clean: Recreational use of the opioids she had been prescribed after her car crash in her early twenties had devolved into a full-blown habit.

Cioffi called a physician friend at Northwestern Medical Center in St. Albans who was an expert on addiction medicine. They got Alexa into rehab for two weeks, but it wasn’t long enough. When Cioffi’s physician friend told him that Alexa might relapse eight or nine times before she recovered, he was stunned.

Frankie wasn’t Alexa’s first child. Several years before she died, she became pregnant. Her boyfriend at the time wasn’t ready to be a father, according to Cioffi, “and she was doubting whether or not she could successfully be a mom.” Alexa stayed sober throughout the pregnancy, then chose the family who adopted her baby. Afterward, she fell into a depression and soon relapsed.

One day in 2016, when she stopped answering Cioffi’s phone calls and texts entirely, he drove to her Colchester condo and found her and her boyfriend “totally out of it.” Frankie was elsewhere at the time. Alexa later moved back into Cioffi’s house in St. Albans because she no longer felt safe in her own home. Cioffi remembers every stinging detail about her final day.

The medical examiner determined that Alexa, 30, died from acute bronchial pneumonia brought on by chronic substance abuse. That night, Guarino took Frankie to her home, and Cioffi sat down with Merrill Reynolds, his second wife, who had no children of her own.

“You didn’t sign up for this, but I’m going to adopt him,” Cioffi recalled saying. “If you can’t do this, you’ve got to tell me now.” The couple divorced shortly after.

Cioffi’s siblings, who all live within walking distance of each other near the Hill Farm, knew their big brother was heartbroken. Yet none was surprised by the sacrifice he would make.

“Frank always comes through,” said Rob Cioffi, his younger brother. “He’s just wired that way.”

Even as a youth, Cioffi was a leader and problem solver: student council president in high school, then a member of the student government at UVM. In the 1970s, when the UVM Board of Trustees voted to abolish coed housing on campus, Cioffi, still in college, lobbied the legislature to change the university’s charter to grant two students voting seats on the board. Behind Cioffi’s desk hangs a 1977 photo of him standing beside then-governor Richard Snelling as the legislation was signed into law. Cioffi remains UVM’s longest-serving trustee, having been reappointed by four governors.

Frank always comes through. He’s just wired that way.

Rob Cioffi

Cioffi had already built a lucrative career in real estate when then-governor Howard Dean appointed him state commissioner of economic development in 1995. Three years later, Cioffi became president of Greater Burlington Industrial Corporation and Cynosure, its nonprofit real estate arm, a job he’s held ever since. From behind the scenes there, he’s helped expand some of Vermont’s largest businesses, including IBM, Ben & Jerry’s, Dealer.com, and Beta Technologies. Cioffi also serves on at least half a dozen state and nonprofit boards. Yet he shies away from the limelight.

Susan “Sam” Andersen has known Cioffi for 35 years and worked with him at GBIC for a decade before her retirement in December. She said she could readily cite any number of Cioffi’s accomplishments at the nonprofit. “But if I were to mention them, he’d call me up and read me the riot act.”

Cioffi initially approached the problem of Frankie’s future the way a real estate developer might. For a time, he considered buying a Burlington nursing home, then converting a few floors to serve adults with developmental and intellectual disabilities. He abandoned the plan when he learned that the state would consider it a psychiatric facility and refuse to license it.

Demoly, vice president at GBIC, offered to help Cioffi solve the puzzle in their spare time. So in summer 2023, the two men assembled a team of interns to research shared-living communities throughout New England, and they began touring them.

Cioffi wasn’t along when the team visited Heartbeet Lifesharing, a licensed residential community in Hardwick. But one of the interns later described it to Cioffi as “kinda hippie-ish,” a cross between a 1970s-era Vermont commune and a kibbutz. Cioffi was intrigued. “Find me the woman who started Heartbeet,” he told Demoly. That woman was Hannah Schwartz.

Cioffi and Schwartz met for dinner at Hotel Vermont and talked for hours until the staff kicked them out. When Cioffi left, he recalled, his head was spinning. There was still much he didn’t know about disability care. But he saw a viable path forward.

For most of the 20th century, Vermont had a place for people like Frankie after their families were gone or were unable or unwilling to care for them: the Vermont State School for Feebleminded Children, which opened in Brandon in 1915. Later renamed the Brandon Training School, the facility was considered a humane alternative to the state’s poorhouses and poor farms. Girls and women from Brandon Training School were hired out as domestic help to provide much-needed revenue.

Many of Brandon Training School’s 2,324 “inmates,” as they were called, were subjected to forced sterilization during Vermont’s eugenics movement of the 1920s and ’30s. Prior to the school’s closure in 1993, disability rights advocates documented a wide range of abuses that included violence, the use of straitjackets and other restraints, isolation in unheated rooms, and the withholding of food as punishment. When residents of Brandon Training School died, they were buried across the street at Pine Hill Cemetery in plots separate from the rest of the cemetery, ostracized in death as they had been in life.

Schwartz’s parents dedicated their lives to ensuring that disabled people never meet a similar fate. Her mother is a social worker. Her father is a civil rights lawyer who advocates for people with disabilities. He was instrumental in shutting down Pennhurst State School and Hospital in Pennsylvania, a filthy and overcrowded institution notorious for horrific violence, abuse and neglect. It closed in 1987.

When Vermont closed the Brandon Training School, the state made a commitment, known as the Brandon Promise, to come up with dignified alternatives to institutionalization for Vermonters with developmental and intellectual disabilities. The state’s answer was so-called shared-living providers, under which the state provides tax-free stipends to people who take those with disabilities into their homes.

“They created one option in 33 years and did nothing else,” Schwartz said about the model, which she sees as deeply flawed: Although caregivers may be generous and kind, the person with the disability has virtually no autonomy. Once the caregiver dies, retires or tires of the arrangement — the average stay is three years, Schwartz said — the person gets moved to another home. “They’re the disposable part of that story,” she said.

After graduating from Goddard College in Plainfield in 1999, Schwartz used some of her inheritance to buy a 150-acre farm in Hardwick to start Heartbeet, a community for adults with developmental disabilities. She based it on an approach known as the Camphill movement, in which people who are neurotypical and neurodivergent live together in small homes shared with others, raising their own food and sharing daily responsibilities. There are more than 100 Camphill communities worldwide, including Camphill Village Kimberton Hills in Pennsylvania, where Schwartz grew up and her parents worked.

Schwartz left Heartbeet in 2019 to manage Mansfield Hall, a dorm for Burlington-area college students with special needs. When Cioffi met her, she was planning a new Camphill community in western Vermont.

In December 2023 Schwartz and Cioffi visited the Camphill Village in Pennsylvania. A week after their return, she called him to say that she had found a house and 30-acre property in Monkton. Though the house had been vacant for years, the bones were solid. And with eight large bedrooms, each with its own bathroom, the floor plan was ideal.

Schwartz was planning Riverflow with three other families whose adult children have developmental disabilities. Among them was Elizabeth Campbell of Shelburne, whose son, Jesse, has Down syndrome regression disorder. Like Cioffi, Campbell was motivated by grief — her husband had died in 2021 — and worry over her son’s future.

“For me to go to my death knowing that his fate was to be a guest in a series of strangers’ homes would be terrible,” Campbell recalled. So a few years ago, she and other Vermont parents of adults with significant disabilities founded the Developmental Disabilities Housing Initiative. They were the driving force behind the 2022 passage of a state law, known as Act 186, that funds innovative housing programs for people with disabilities. Riverflow was awarded one of its first grants, for nearly $170,000.

At the time, Cioffi knew little about disability housing but a great deal about navigating state agencies and raising money. He secured a separate $300,000 grant through the Department of Housing and Community Development.

Riverflow opened to its first five residents in October 2024, just 10 months after Schwartz and the group of parents purchased the Monkton property. They set up a nonprofit, which received its Act 250 land-use permit to expand on April 9 of this year, the 10th anniversary of Alexa’s death.

Cioffi enlisted a lobbying firm and secured an additional $2.8 million in the 2026 state budget for similar housing initiatives elsewhere in the state. He now serves on Riverflow’s board of directors and is trying to raise money for improvements, which, unlike residents’ care, are not covered by Medicaid. Demand is intense: Before it opened, Riverflow received 75 applications for five spots.

Schwartz’s wife, River Parker, manages the property and recently built a greenhouse where the “friends” and an equal number of live-in staff, or “householders,” will grow vegetables year-round. There’s a working apple orchard, sheep and chickens, for egg production. Schwartz’s goal is to produce most of Riverflow’s food on-site, as she did at Heartbeet.

The main house has the relaxing air of a bed-and-breakfast, with a long dining room table and a spacious living room where residents lounge on comfy couches. In a basement woodshop, the friends make cutting boards, candle holders, coasters and picture frames. Each bedroom is bright, airy and personalized.

Riverflow is taking shape in stages as funding becomes available. When it’s finished, 50 Vermonters will live there. And while many disability-related organizations are severely short-staffed, Schwartz receives a steady parade of qualified applicants.

Because Riverflow is licensed for adults only, Frankie is years away from moving into his “forever home,” as Cioffi calls it. But he loves to visit, calling it his “playdate with Hannah.” For a boy who never had playdates — or friends — that feels to Cioffi like a major step forward for Alexa’s son. His son.

Cioffi’s 10-year anniversary letter to his daughter offers a lesson in grief and a reminder that tragic loss can also serve as a catalyst for growth and fuel for a higher mission. His search for Frankie’s forever home, Cioffi wrote, renewed his own ability to “focus on what matters most.”

The original print version of this article was headlined “Love, Dad | Frank Cioffi honored his daughter’s memory by adopting Frankie, her autistic son. Now he’s planning a future for the child and others like him.”

Read Frank Cioffi’s full letter to his daughter, Alexa:

This article appears in June 17 • 2026.

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