By Sabra Anckner and Brittany Frew, Association of Maternal & Child Health Programs (AMCHP)
In spring 2020, the Association of Maternal & Child Health Programs (AMCHP) received a CARES Act grant from the Health Resources and Services Administration Maternal and Child Health Bureau to support various Maternal and Child Health programs. The CARES Act grant will help the Title V/Children and Youth with Special Health Care Needs program with newborn screening (bloodspot and hearing tests) and the Maternal, Infant, and Early Childhood Home Visiting program expand their use of virtual services in response to the pandemic. Through a request for proposals, AMCHP issued 21 subawards representing 24 jurisdictions in the fall 2020. The awardees encompass 18 states, three territories, one freely associated state, and two tribal nations. The objective for each project is to improve access to services for families who were not well served prior to the pandemic. All awardees were expected to collaborate with family experts and leaders as they developed their proposals to ensure that all project plans met the immediate and varied needs of their clients.
Although many agencies are once again able to offer in-person services, each of AMCHP’s awardees identified benefits to telehealth that were not pandemic-related. All awardees are working to sustain some or all of the efforts developed as part of their awards. AMCHP is pleased to highlight three projects focused on families of children and youth with special health care needs. We also invite you to learn more about all of the projects on our website.
In New Jersey, the Binder Autism Center (BAC), which is part of the Child Development Center at St. Joseph’s Children’s Hospital, provides telehealth services to youth and their families, in partnership with the New Jersey Department of Health’s Title V program. In 2020, BAC began hosting online support groups and classes on a variety of subjects, including cooking, karate, and social skills, to reach families during the pandemic. The telehealth sessions are facilitated by therapists and social workers at BAC, and they provide children, siblings, and caregivers with an accessible option for education and support from home. Since implementing the telehealth program, BAC has received positive feedback from families and continues to offer virtual options, including holiday events.
“One mother shared how her son, who is autistic, now prepares the dinner salad for his family. She explained how she was hesitant for him to use a knife, but due to the cooking classes she was able to witness his new skill of handling a knife safely.” – Pamela Martorana, Manager of Clinical Services at St. Joseph’s Children’s Hospital
In Arizona, telehealth is a tool to connect families of children who are deaf and hard of hearing (DHH) and eliminate barriers that may prevent them from accessing services and support. When the pandemic began, Arizona Hands & Voices (AZHV) adapted its Guide by Your Side™ program for virtual delivery. Through video conferencing platforms, AZHV connects families of infants and children recently identified as DHH with a Parent Guide and/or a DHH Guide to provide one-to-one support and resources. AZHV hosts live events, such as “What’s Up Wednesday,” a popular recurring parent event, and “Storybeatz,” an interactive reading group for families. AZHV ensures that both American Sign Language (ASL) interpreting and live captions are available for virtual meetings to allow families to fully participate in the programming and to set an example of what digital accessibility should look like. The implementation of telehealth has enabled AZHV to reach families living in rural and remote areas of Arizona. Telehealth has also enabled Spanish-speaking and Arabic-speaking families to partner with bilingual Guides living elsewhere in the state. For many families, prior barriers persist even as some in-person services have resumed. Thus, AZHV plans to continue the telehealth program as a long-term solution.
Georgia’s wide expanse of rural areas and concentration of services in the Atlanta metropolitan area have created significant challenges for rural families seeking specialty care services for their children. At the onset of the pandemic, Georgia’s Department of Public Health MCH Section within the Division of Health Promotion was able to shift many of their programs, including Part C, to virtual care. However, families without the necessary devices or internet access, as well as those unfamiliar with or uncomfortable with telehealth tools, were at risk of having their service options limited even further. Georgia funded 10 local health districts to obtain devices and supplies to support families locally and expanded tele-audiology for infants to a third distant site. Families are now able to receive a wide array of virtual services, from pulmonology and sickle cell care to physical and occupational therapy. In addition, Georgia is shoring up resources to continue offering telehealth long term. By collaborating with other agencies, including a new partnership with the Department of Education to expand the Georgia Mobile Audiology Unit, the state is improving access to care. By working with local chapters of family-led organizations, including Parent to Parent and Georgia Hands & Voices, the state is gaining insight into the needs of families to jointly strategize on how to improve services.
Telehealth is not the solution to all problems. Rather, it is one tool in the toolkit as MCH programs try to improve access and better outcomes for all children and families. Broadband and other structural barriers, along with family capacity and preferences can be obstacles. It is thus essential for MCH programs to work with families to provide the care—and determine the tools and support needed to access that care—in a manner best suited for the family. AMCHP developed a framework for equity in telehealth policy. The AMCHP website has additional tools and resources.
Thanks to supplemental funding from the Centers for Disease Control and Prevention’s National Center for Birth Defects and Developmental Disabilities, AMCHP’s support of MCH telehealth will continue. If you or your agency are considering changing, expanding, or starting new telehealth projects—or seeking to evaluate existing ones—please reach out to us for technical assistance at firstname.lastname@example.org. We also invite you to check out the six CARES-funded telehealth practices accepted as cutting-edge practices in AMCHP’s Innovation Hub. In the new year, AMCHP will launch a series of virtual roundtables on telehealth to encourage MCH staff to learn from each other and national subject matter experts. We invite you to sign up for updates by filling out the AMCHP Telehealth Roundtable Interest Form.