In the era before Trudeau, individuals with intellectual and developmental disabilities lived with ‘tremendous stigma’ surrounding them and their families

This story originally was published in the Warwick Beacon, a publication partner of Ocean State Stories.

WARWICK — There was a lack of eye contact. The small infant also wasn’t rolling over.

Carter Almeida, who was six months old in early 2020, couldn’t make that indescribable connection with those around him, quite like other babies at their early stages in life, remembers his mother, Marcella.

She called the doctor and after an evaluation, Carter was eligible for several “early intervention” programs at the J. Arthur Trudeau Memorial Center – just a handful among its offerings for children and adults with intellectual and developmental disabilities.

 “For me, it was really, really hard at that point,” Marcella says, recalling the regular video chats she had with Trudeau staff as the COVID-19 pandemic picked up that March. 

“Carter started getting aggressive – hitting me, hurting himself,” she continues. “And the therapists with early intervention were absolutely amazing. I don’t think I would have survived the pandemic without them.”

Carter and his 3-year-old twin siblings, Nathan and Natalia, have all since been diagnosed with Fragile X syndrome, a genetic condition that impacts development, particularly behavior and the ability to learn, according to the National Institutes of Health. (Marcella describes the syndrome as a leading cause of autism.)

Together, the three children are among more than 3,000 people – from infants to adults in their 80’s – from around Rhode Island, Massachusetts, and Connecticut each year who rely on the Warwick-based Trudeau Center for crucial support.

This spring marked 60 years since Trudeau first opened its doors and became a pioneering force in its field.

And over those six decades, it has grown, and in some ways, very recently, shrunk, all the while adapting and transitioning past stigmas and embracing new methodology and techniques. 

But, most importantly, a constant has remained: chartering new and unique ways to provide support with dignity for some of the most vulnerable residing here in southern New England.

Now, on the other side of 60, the center is, simply put, “alive and well,” says Dr. Al Vario, president and CEO.

We’re here,” he says. “We’re strong.”

Born from caring parents

In the era before Trudeau, individuals with intellectual and developmental disabilities lived with “tremendous stigma” surrounding them and their families, according to Vario.

“People with disabilities were hidden in attics, hidden in basements,” he says, speaking from his office at 3445 Post Road. “You didn’t see them out in the public very much.”

While the state-run facility in Exeter known as The Ladd School opened as early as 1908, by the mid-20th century, conditions there had deteriorated. 

“What was supposed to be something good turned into something horrible, where people with disabilities were warehoused, were physically abused, verbally abused, sexually abused. People were naked, they were washed with fire hoses,” Vario says. “There’s extensive history on the abuses that occurred at The Ladd [School].”

Facing what was essentially those two paths, Arthur and Evelyn Trudeau worried about their son, Kenneth, and the care available to him as someone living with a disability.

In response, the couple helped form the “Parents Council” in 1951 to support and advocate for families of children living with similar conditions. Through their work over the ensuing years, they eventually established the Warwick-East Greenwich ARC, incorporated in 1964, with plans to house daycare and occupational training centers.

Following Arthur’s sudden death in late 1965, when the center later opened in October 1966, it was given his name.

Through the late 1990s, the center continued to grow, adding the early intervention program, adult housing, and other initiatives to support aging adults who entered Trudeau earlier as children.

In 1998, Pathways formed to offer the “the first comprehensive education and treatment program for children with autism and related disorders in the state,” according to the center. Collectively, Pathways now offers occupational, speech, and physical therapy and as of last fall, the program served about 75 students.

“We started primarily with adults and today, we support more children than we do adults,” Vario says, summarizing Trudeau’s broad history. “We’ve kind of had that metamorphosis.”

Emerging after COVID with hopes for possible expansion

Still, Trudeau suffered through its share of struggles. 

For several years from about 2007 through 2015, the center faced a tough financial outlook, according to Vario, who says funding problems were to blame.

In 2011, in the middle of that period, Trudeau reported $24 million in revenue, but a mere $421 in net income, according to financial statements kept in a database of nonprofit records maintained by ProPublica. In 2014, the center reported a loss of about $1 million, the files show.

“We had to take out a line of credit that we tapped out, and we had to tap into our cash reserves,” says Vario, who began his time at Trudeau just as finances were beginning to improve. (He became the chief executive early last year.)

These days, things are different. That credit has been repaid. There’s money in the bank, Vario says. In 2022, Trudeau reported nearly $29.5 million in revenue, with a net income of approximately $1.3 million, records show.

“We weathered it and today, we’ve infused our board with not just people who necessarily want to fulfill the mission – although they do – they also bring other things to the table,” he says. “They bring expertise and a vision to help us sustain what it is we’re doing.”

The COVID-19 pandemic also dealt its own blow to some of Trudeau’s operations. 

Crayons, Trudeau’s integrated early learning center, was forced to close during the widespread shutdowns during the health crisis. When it was ready to reopen, parents were not quite yet ready to send their kids back, Vario says.

As a result, Trudeau opted to permanently shutter it, as keeping it open meant operating at a loss, he says.

“As a business, we had to close it down,” Vario says. “It was sort of draining the organization.”

According to Vario, the majority of Trudeau’s programs rely on Medicaid cash from the state and on private health insurance reimbursements. Pathways is the exception, as the school relies on tuition – a cost covered by the school districts that send their students to the program, he said.

Prior to the pandemic, Trudeau boasted more than 700 employees, Now, that number has dwindled to about 500.

But with the re-working, Trudeau has emerged as a “leaner, meaner version” of itself – a configuration that makes the center “the strongest we’ve been in decades,” Vario says.

And with that strength, Trudeau is now positioned for possible expansion in the years ahead, particularly around its most successful services, like the early intervention program, Vario says.

“We’re always looking to meet the needs of the community. So we’re entertaining other kinds of plans to meet other unmet needs,” he says. 

“One that jumps out to me is children’s behavioral health,” he added. “There are wait lists for services. There aren’t enough providers. And although what we do is in behavioral health, per se, you could make the leap that Trudeau could offer those services.”

Vario says Trudeau could even acquire “another, similar organization, if the opportunity presented itself,” with its current fiscal standing.

The industry is going through a lot of change, too, he explains. With a generation of retiring baby boomer executives, some organizations may decide it no longer makes sense to continue operating independently, Vario says.

“There are conversations that are happening about what organizations can join together and have some growth, business growth that way to create long term sustainability,” he says. “So, Trudeau is positioned very well for those kinds of opportunities, should they come our way.”

‘People who understand us’

But ask Vario what the work itself means to him, and the answer he gives is not about dollars and cents, planning and strategic thinking.

For himself and for many others at Trudeau, it’s about something else. 

It’s about the mission, he says. It’s about the people.

“I truly love what I do, and I truly believe in what Trudeau does and other organizations like us do,” he says.

During the week, Marcella picks up Carter and Nathan early from their school in West Warwick. Together, the two brothers attend afternoon sessions of applied behavioral analysis therapy at Trudeau, where they work on skills such as repetition and imitation, according to their mother.

Carter has been in the program for the past two years and he’ll continue to be there until he’s about 7 or 8 years old. 

“He absolutely loves it. He knows all of the staff’s names, which for us, it’s a big deal because technically, he’s nonverbal,” Marcella says. “He only says a few words, but he knows their names.”

He can’t even wait to get out of the car each day when they pull up to the center.

That excitement helps put Marcella at ease. It’s hard as a mother of a child who is nonverbal to be able to leave her son somewhere, knowing he won’t be able to explain how his day was, how he was feeling, and even simply, whether he had any fun, she says.

The fact Carter can’t wait to go inside is just amazing, she says.

“We have people who understand us,” Marcella says.

Take this, for example: Last week, as she picked up Carter from Trudeau, she left in tears, she explains. Not only had he really hurt her because of aggressive behavior, but it hurt her to see the way he was.

And at Trudeau, they know, she says. They understand the whole dynamic.

“And they’re going to try to do their best to help us understand him and help the situation,” she adds. “Knowing that we have support, that we have people like the staff at the Trudeau Center, that care, it’s unbelievable.”

Editor’s Note: Ocean State Stories director G. Wayne Miller has covered the intellectually and developmentally disability community since the early 1980s, when he was a staff writer at The Providence Journal. He wrote about the Trudeau Center for Ocean State Stories last year. Some of his earlier writing on these issues is available here.