Parents and caregivers of children who are medically complex face extraordinary challenges. From the day of diagnosis, families must learn to navigate their child’s care and advocate for proper quality of life. With more than 90% of St. Mary’s inpatient population eligible for Medicaid and nearly 25% speaking English as a second language, there are many financial and language-based barriers that hinder caregivers from accessing optimal care for their child.
In response, St. Mary’s has developed what we believe to be the nation’s first Patient Navigation Program for the medically complex pediatric population. Our experienced program leaders manage a team of skilled volunteers in providing long-term advocacy and assistance to families of children currently admitted to our inpatient hospital.
Volunteer Navigators undergo extensive training designed to help them guide caregivers through the complexities of the healthcare system and provide emotional support. Navigators provide referrals to healthcare services, schedule appointments, and provide the stability of a long-term, single point of contact for any healthcare-related questions or uncertainties.
When we reach full capacity, the program will provide services to approximately 120 families each year through 2,450 volunteer hours of service, with plans to expand further into our Community Programs.
This spring, Sherli was admitted to St. Mary’s after suffering a stroke resulting from a brain tumor. While at St. Mary’s, Sherli received intensive rehabilitation therapies and made significant gains toward her recovery. Within a couple of months, Sherli’s family was overjoyed to hear she was cleared for discharge, but a major barrier stood in the way: Sherli, now reliant on a wheelchair, could not go home until her apartment was made accessible.
Without a clear sense of how to arrange for the necessary renovations, Sherli’s mother, Cynthia, was able to rely on St. Mary’s Patient Navigation program. Staff put Cynthia, whose primary language is Spanish, in touch with a Spanish-speaking associate from Bronx Independent Living Center (BILC), and soon plans were underway for renovations. When compliance in Sherli’s apartment building was slow to materialize, our Patient Navigators worked with BILC to engage the Bronx Commission on Human Rights. Soon thereafter a hallway ramp was installed, making it possible for Sherli to access her apartment by wheelchair. Upon the project’s completion, Cynthia was moved to tears. With the support of St. Mary’s, she was finally able to reunite her family at home.
Patient Navigators will follow up with Sherli and her family over the coming weeks to ensure that all aspects of Sherli’s transition home are successful.