Support System. Lifeline. One Family's Story.
To a lay person, the story of the Connecticut Children’s Office for Community Child Health (the Office), might appear a complicated one: A back office story about the health care system’s inner workings and how a hospital and health plan aspire to better connect medical care with social services. But how does the Office and its support from UnitedHealthcare impact the lives of the children and families they serve?
Meet Veronica Rosario. Veronica recently lost her husband to cancer and is now a single mother raising two young boys—Jamier Omar (nicknamed “Omi”), age seven; and Carlos, age 13. And then the unthinkable happened: her youngest child, Omi, was diagnosed with Duchenne Muscular Dystrophy.
In need of a support system, Veronica—who had lived in Puerto Rico her entire life—moved in with her mother-in-law in Connecticut. She then sought help from the Center for Care Coordination (CCC), a program of the Office. What she found there was solid medical advice, help navigating an often complex and intimidating health care landscape, and an empathetic shoulder to lean on.
Most importantly, she found a support system; a lifeline; a safe haven. She found family.
“Literally by the time I got to the parking lot after my first visit, they’d scheduled appointments for the cardiologist, the neurologist, the orthopedist,” Veronica recalls. “I had all the necessary appointments coordinated within a week or month, depending on the need—that’s how fast and coordinated they are.”
The CCC put various supports in place for Omi, including physical therapy, occupational therapy, speech therapy, psychological therapy, and provided him with a wheelchair because he easily grows fatigued.
But the medical needs were just half the battle. Over 1,500 miles from her home, Veronica was also acclimating to a new country, a new health care system, and a new community. So the CCC also worked with Veronica and her family on identifying the best schooling and housing options for her children, and a support system to help cope with the stresses of her challenging circumstances. “It’s about making sure the family feels supported; that the family is on the right track,” Veronica says. “And sometimes you need that feeling of a pat on the back. ‘You’re doing good,’ you know? ‘You’re doing good and everything is going to work out.’ That feeling is so, so helpful.”
They also provided intangibles that Veronica couldn’t have expected. “For Christmas, the Center for Care Coordination helped me to find toys for the children, and a coat for Carlos because he needed a winter jacket,” recalls Veronica, who is now active in patient advocacy through local organizations and the Connecticut Commission on Women, Children, and Seniors. “These are services that go beyond just medicine—the clinical aspect of it.”
Describing the tireless dedication of Maria Guzman, her family’s care coordinator, Veronica relates the story of how the Office helped the family secure its new apartment in East Hartford, Conn. “Maria came to my home to make sure I filled out the housing application correctly,” she explains. “She could have just e-mailed it to me, or sent it by mail. But, no, she made sure I received it, and that I filled it out correctly. She even contacted [the housing agency] to make sure she could hand it in because I didn’t have transportation at the time and she didn’t want to risk sending the application through the mail. I consider Maria a friend; I see her as family.”
That peace of mind is invaluable for this hardworking and loving single mother, and it allows her to place her focus and attention on making important decisions. “I don’t have parents, I don’t have a husband, I don’t have a nuclear family to help me make decisions,” Veronica explains. “So, basically the Office has become my family. I can tell them, ‘Look, this is what’s worrying me; these are the options that I have.” And they give me other options: ‘Have you thought about this? Have you considered this other idea?’ And knowing what’s out there and available to us is very important.”
Through care coordination, insight, and empathy, the CCC is empowering Veronica and her family to thrive. “I don’t beg for a miracle, I don’t demand a miracle,” Veronica says.“But put the people that are going do 110 percent for my son in my way. Put them in his way so he can get the best care possible. And here at Connecticut Children’s Medical Center he receives that.”