On the third floor of the Puddu wing at Rome's San Camillo Hospital, tucked at the end of a corridor, two rooms welcome Federica and Max—and their mothers—for a single day. It's just past lunch, and they're waiting in their assigned rooms for the post-operative checkup that follows a straightforward dental procedure: a cleaning. But for them, nothing about it has ever been straightforward. Both are about twenty years old. Both have severe communication difficulties. For people like them—those classified by hospitals as "uncooperative" or "difficult" patients with intellectual disability—even a routine dental exam is far from guaranteed. Once a week, the operating room on the floor above is reserved for cases like theirs, for the interventions that San Camillo, a Level 2 emergency hospital, is equipped to handle.
What began as a "pilot project" at San Camillo in November 2019 became an official service last October: Tobia. It is a cross-departmental initiative, currently staffed by six trained professionals who specialize in meeting the needs of people with severe intellectual disabilities. The service offers preventive, universal healthcare through careful listening, welcoming, and accompaniment through clinical and diagnostic pathways.
"I invented nothing," says Stefano Capparucci, who coordinated the pilot and now oversees the service. "I heard about the Dama project in Milan, so I went to see how it worked. I simply copied that model and adapted it to San Camillo's reality—with fifteen separate wings, it's almost a hospital town, with all the logistical complexity that entails. I saw it as a real necessity and as the realization of a fundamental right to care that cannot exclude anyone."
Yet exclusion is exactly what people like Federica and Max have faced. Fabrizio Pugliese, one of the staff members in the distinctive mauve coat (designed, along with other measures, to make the hospital environment feel less threatening), recalls the stories patients bring with them—rejections from other hospitals because the patient "doesn't cooperate." "How many times: 'I'm sorry, we tried but we couldn't complete the tests.' Here, we've made sure those responses stop happening. We've involved anesthesiologists, for instance, so they can perform radiological exams under sedation when needed."
Being able to conduct multiple diagnostic evaluations in a single session, taking advantage of the anesthesia that's already necessary, has proven crucial for many of these patients. Consider a twenty-one-year-old Ecuadorian boy whose sudden self-injurious behavior—head-banging—remained unexplained. During an MRI under anesthesia (which showed nothing), the ear, nose, and throat specialist examined him too. Only that thorough evaluation, impossible while awake, revealed the cause: herpes in the deep ear canal.
It's not simply about offering sedation for procedures that wouldn't normally require it. An approach that refuses any physical restraint during diagnostic procedures means Tobia must pay careful attention to timing and scheduling. In practice, this means appointments are booked late morning; doctors know they'll have extra time for each visit; families receive advance notice if an appointment needs to be rescheduled; when necessary, a family can see multiple specialists in a single day. Small things. Essential things for a family under strain. The parents who accompany their children are often alone, frequently elderly, and this service lifts enormous burdens from their shoulders.
One mother captured this better than words could at a symposium on fragility. Capparucci remembers her unexpected testimony about the service he'd helped create. She was widowed, raising a son with severe intellectual disability. To care for him, she'd had to leave her job. But when health problems arose, she found only closed doors. She was so desperate that institutionalizing her son seemed like the only option—letting someone else handle what she couldn't manage. "When I found Tobia, it seemed impossible that something like this could exist," she said. "My heart felt lighter. Finally, I was being supported." Tobia had made it possible for her to choose her own path, freely and with full knowledge.
Parents are not always heard when evaluating their child's health—yet they are often the ones best equipped to recognize suffering. Only after detailed diagnostic imaging under anesthesia revealed exposed tooth roots caused by chronic grinding (common in certain conditions) did a twenty-one-year-old boy's self-injurious behavior finally make sense. He'd been loaded with psychiatric medication based on a diagnosis of psychosis. The missed diagnosis had created another.
"Once parents are no longer here, the people around these individuals must become vigilant observers," Pugliese adds. "But that delays awareness of health problems. Prevention schedules should apply to everyone. And we can measure the economic benefits too—what we save by preventing emergencies through proper care. This could help close a gap highlighted in a recent WHO report: people with disabilities have a life expectancy twenty years shorter than the general population."
Narciso Mostarda, director general of San Camillo Hospital, emphasizes how the service has overcome a pervasive mindset: that complex disabilities were an emergency add-on, something staff had to "also deal with" on top of everything else. "Now we handle these as routine clinical problems—a fundamental right that was far too often denied. And we're no longer caught unprepared because we've built meaningful relationships with families." Families who, until now, risked choosing not to treat their child because they were "difficult"—only to face a crisis in the emergency room. Two tragic mistakes that can now be prevented, simply by knowing where to turn.
"We're asking," Mostarda concludes, "that a large hospital like ours maintain readiness and sensitivity, never be caught off guard. We've reached 850 families who trust us—not for discounts but for the care they receive, because we've built a real relationship. We're investing in further development: a welcoming space at the main entrance where no one can get lost. There are many vulnerable people to reach and embrace, and learning to welcome and accompany them will make all the difference."
The Dama and Tobia Projects
In 2001, Filippo Ghelma, a physician at Milan's San Paolo Hospital, found a way to bend the rigid hospital routine to fit the needs of a young man with severe disability. A year later, the Dama project was born (Disabled Advanced Medical Assistance), which has since grown into a national network present in twenty Italian cities. In Rome, Tobia (Team Operativo Bisogni Individuali Assistenziali—Operational Team for Individual Care Needs) launched the same good practice. "A man in his late forties with severe intellectual disability had frequent episodes of self-injury resulting in retinal detachment," Stefano Capparucci recalls. "We responded urgently through the ophthalmology ward with targeted, expedited surgical interventions. Otherwise, wait times would have been fatal. Why not standardize pathways like this, based on clinical care needs, so they become routine rather than privileges?" A call center (06/58706099 and 346/2337741) takes calls from family members, caregivers, staff at day centers or residential facilities, and general practitioners. A telephone triage collects patient data and specific details. An individualized intervention plan is then activated, involving all relevant departments and professionals, accompanying the patient through each stage. Building on San Camillo's experience, this model will expand to fifteen other regional health authorities in Lazio thanks to regional guidelines already approved.