Twenty-seven-year-old Dan Fiorentino grew up in West Hartford and graduated from Hall High School, just like both of his parents. He has a job, a supportive family and a passion for the Boston Red Sox. But because he has Down Syndrome, there’s no telling when he’ll be able to live on his own.
Whether he lands in a group home or his own supervised apartment depends on the waiting list of about 1,800 Connecticut families hoping to see a bed open in a state-supported group home or congregate living facility.
Right now, Fiorentino’s life is well organized, with plenty of parental support. A part-time job in a dermatologist’s office keeps him busy three mornings a week. One of his parents drives him there and picks him up. There are art classes and workout sessions at a gym in Hartford with his father that keep him occupied, busy and productive.
For a developmentally disabled person, Fiorentino is “high-functioning.” He talks in brief sentences, responds to questions, plays Password, and can use a computer to vote for his favorite Major League All-Star.
He has successfully learned his job as a sort of escort for medical patients, dermatologist Dr. Jennifer Pennoyer said. She found that building an electronic system of medical records placed more demands on her clerical staff, so she hired Fiorentino to usher patients into the examining rooms. He positions the “flag” markers indicating to the doctor and physician’s assistants which patients are ready to be seen. He cleans up discarded gowns and magazines after a patient leaves.
Pennoyer said Fiorentino got intensive training by job coaches provided by a nonprofit agency, and has fit in well to the office routine. In many ways, he’s a model employee. When something goes wrong and he has to make a correction, Pennoyer said, “he doesn’t get upset, he just redirects and tries harder.”
Taking advantage of a 2014 federal law, Fiorentino’s parents Tom Fiorentino and Shelagh McClure helped Fiorentino set up a tax-advantaged savings account for his earnings. Framed examples of his paintings hang throughout the family home on a quiet street just off Mountain Road.
Tom Fiorentino is a retired attorney who serves as president of the board of The Arc Connecticut, the state’s leading advocacy organization for those with intellectual and developmental disabilities. He knows his son is thriving, but many like him are not. He has little patience for the way Connecticut spends its social services resources.
That begins with the costly maintenance of Southbury Training School, an institution built in the 1930s that the state began phasing out in the mid-1980s. Now only 200 residents remain in a facility that once housed thousands. Three years ago, the General Assembly ordered closure plans drawn up for Southbury and the remaining regional centers run by the Department of Developmental Disabilities. Due at the end of 2016, it has not been completed.
‘Wed to the past’
“By now, 15 U.S. states have no institutions,” Fiorentino said. “But Connecticut is wed firmly to the past. It’s more than inertia: I think there are constituencies out there” pressing to keep open the outmoded training school.
Tom Fiorentino acknowledged that relatives of the aging residents of Southbury understandably worry about seeing their loved ones forced to leave a familiar setting where they’ve lived for decades. But he says Southbury along with the smaller, regional residential centers, are just cost-prohibitive.
“The states that have done away with institutions have figured out a way to keep those people safe outside institutions,” he said.
It’s been a decade now, he noted, since the state Department of Developmental Services declared that funding for virtually all residential placements would be reserved to emergency cases. Those are instances where the last family caregiver for an intellectually disabled person either dies or becomes permanently incapacitated.
That’s the situation he and his family may someday face, he said, along with so many others. It’s vexing, he said, that approaches that make better use of scarce social services dollars are only slowly being adopted. These include “shared living” arrangements that pair developmentally disabled clients with roommates who are not disabled. Another promising tactic involves using digital monitoring technology that allows mentally disabled people to live more independently – without costly 24/7 staff supervision.
At a time when $12 an hour is the typical wage of direct-care staff at private nonprofit organizations offering programs for the developmentally disabled, Tom Fiorentino has trouble understanding how DDS can justify paying employees with similar duties upwards of $50,000 a year. Staffing just the fire department at Southbury Training School costs the state more than half a million dollars in overtime alone, he said.
With no end to the budget cuts in sight, it’s hard not to lose hope, Fiorentino said. “There are better ways where we could serve more people within the available appropriations,” he said. “We need to realize that the way we’ve been doing things is not sustainable, and our job is to show what that change looks like, what we could be doing.”