Prior to the COVID-19 pandemic, many states implemented telemedicine programs for CYSHCN to increase access to pediatric subspecialty providers. The pandemic necessitated, in many cases, an almost complete shift to telehealth, which highlighted both the benefits of this service delivery model as well as inequities in internet and device access. Continued access to telehealth services beyond the pandemic will be particularly beneficial for CYSHCN living in rural areas, CYSHCN whose caregivers do not have access to reliable transportation, CYSHCN whose caregivers work low wage jobs or lack workplace protections, children with medical complexity (CMC) with extreme fragility, and CYSHCN with autism and behavioral or mental health conditions.1 Many state Title V agencies employ strategies to increase access to telemedicine services for families by strengthening provider capacity, increasing access to necessary technology, and expanding telehealth billing and reimbursement mechanisms. 

1 Van Cleave, J., Stille, C., & Hall, D.E. (2022). Child Health, Vulnerability, and Complexity: Use of Telehealth to Advance Care for Children and Youth with Special Health Care Needs. Academic Pediatrics, 22:2, pg. S34-S40.

Supporting Families in Accessing Telehealth

The Kentucky CYSHCN program offers a device loan program, where they are able to mail tablets to families ahead of scheduled telehealth visits.

Implementing “practice calls” with a nurse before a provider visit has been successful in acclimating families to using telehealth. In Maryland, nurses at a NICU follow-up clinic call families before their appointment to talk them through setting up their devices. Nurse Care Coordinators at Kentucky’s Office for Children with Special Health Care Needs set up a video call appointment with patients before their physician appointment to ensure their technology is working correctly and conduct patient assessments ahead of time.

Nevada’s Title V agency collaborates with the University of Utah Department of Pediatrics to financially support an online Medical Home Portal (MHP) that includes a nationwide service directory for CYSHCN and their families. The directory includes telehealth resources that are accessible to those living in rural and frontier areas. Nevada’s CYSHCN program was the first MHP partner to launch the nationwide network feature, and state agencies serving CYSHCN in Utah, Rhode Island, Montana, New Mexico, and Ohio also support the portal.

Increasing Provider Capacity to Deliver Services via Telehealth

In the fall of 2018, Colorado’s CYSCHN program offered mini-grants to support primary care providers in purchasing telehealth equipment. Twelve grants were awarded, which allowed six primary care provider organizations to begin offering telehealth services for the first time, and six organizations to expand their telehealth capacity. In addition to increased primary care access, the program allowed for the provision of integrated behavioral health services and expanded access to specialties such as dermatology and diabetes management.

Extending Access to Care through Telehealth

In 2019, the Colorado CYSHCN program contracted with the University of Colorado School of Medicine and their Developmental Pediatrics staff to improve access to care for children with Autism Spectrum Disorder and other developmental disabilities. This pilot included implementation of five strategies to decrease wait times for assessments, including the use of telehealth, teleconsultation and e-consultation to triage developmental evaluation referrals with trained community-based providers. After the first year of the program, the waitlist for full developmental evaluations decreased by 16 percent.

Since 2018, the Wyoming CYSHCN program has offered in-person and telehealth genetics clinics. In-person clinics for new patients are held quarterly at two public health nursing offices, and a third location offers one in-person clinic day per year. After the initial in-person appointment, follow-up is conducted via telemedicine visits. Clinic participants have reported that telegenetics made it easier for them to receive services and that they were satisfied with the quality of care.

Utah’s Office of CSHCN hosts tele-audiology services for newborn hearing screening and diagnosis at seven locations across the state. Nurses at the remote sites provide face-to-face contact with the families and set up the testing equipment while a pediatric audiologist controls the testing remotely. If a child is identified as deaf or hard of hearing, the Office of CSHCN helps the family with referrals to early intervention, parent-to-parent support, and referrals to medical providers.

Telehealth Care Coordination Delivery

The Kansas CYSHCN program provided telehealth equipment to Saline County Health Department to provide outreach and care coordination to families. The care coordinator is trained in the use of the telehealth equipment and offers these services to the families she works with.