But due to the closures, he’s gone months without care. Daniel, who is 37 years old, stuck with his Tufts pediatricians well into adulthood. (Pediatricians often have more experience with the intricacies of cerebral palsy than do adult doctors.) Changing that was never part of the plan: His parents intended on sticking with his Tufts pediatricians even after the closures. “The good news is that other than when a child needs overnight care, the vast majority of services currently available at Tufts will remain open and unchanged,” the hospital’s leadership promised in a February 2022 letter to families.
That hasn’t been their experience at all, Joyce said. Because Daniel is medically stable, he was discharged from his primary care doctor’s clinic a few years back. Since the closure, he hasn’t been able to get into the kind of pediatric treatment—gastroenterology and rehab medicine, neurology and primary care—that he needs. “We worked with every single patient and family impacted by this decision to assist with their care transition,” a representative from Tufts Medical Center wrote when contacted for comment about patients like Daniel struggling after the closure. “Due to patient privacy laws, we cannot comment on any specific patient case.”
“I plan for A through Z; that’s my life,” Joyce said. But now she doesn’t know who to reach out to, or where to go, if things go south. These days, Daniel’s care is “so tremendously piecemeal that it’s scary,” Joyce added.