Thirty-two years ago my newborn daughter was discharged from Boston Children’s Hospital after an operation to repair a congenital birth defect and a lengthy period of recovery. Her mother and I had prepared for this—we knew the diagnosis from the ultrasound, had done the research you could do in 1986, asked the questions we could learn to ask—and got a good outcome. We went home to the western end of the state to raise twin daughters, one with a major disability (“our third child,” her mother says), and found ourselves in a system whose existence we hadn’t known of:…