Initial Analysis of COVID-19 Pandemic's Impact of Services for Children with Special Health Care Needs in Texas

Background and Purpose:

COVID-19 pandemic has impacted many vulnerable populations, including families with children with special health care needs (CSHCN). CSHCN make up 19% of U.S. households, and includes children with increased risk for chronic physical, developmental, behavioral, or emotional conditions. The CSHCN Project conducted a needs assessment exploring case management services with CSHCN families in Texas. The data collection occurred during the pandemic in 2020, and provides insight and long-term implications on CSHCN, related to the pandemic and to future disaster-preparedness.

Methods:

A mixed-method design of a survey and interviews/focus groups were conducted with caregivers of CSHCN (N=11 interviews; N=41 survey) and case management staff for CSHCN families (N=38 interviews; N=52 survey). Participants were recruited from the staff contacts and all participation was voluntary, with caregivers receiving compensation. Interviews were conducted in English and Spanish, and were recorded, transcribed, coded and analyzed using content analysis software. Descriptive statistics were used to analyze survey data.

Results:

The pandemic impacted the way all families receive services, with many services provided virtually rather than in-person. Caregivers described the types of services that were challenging to access during the pandemic including key socialization activities for CSHCN (75%), routine medical care (63%) and educational services (59%). During interviews, participants described a large portion of services for CSHCN (e.g., therapies) are provided through the school which left a significant gap for CSHCN when schools were closed. The shift from in-person to virtual services had its benefits and challenges among CSHCN caregiver and families. While staff missed seeing families in person, they valued virtual visits, as it significantly reduced their travel time especially in large rural regions. Families and staff with reliable access to internet and technological literacy appreciated the ability to communicate and submit paperwork electronically. Some caregivers preferred the shift of parent support groups from in-person to on-line, as it overcame transportation and childcare barriers. However, some caregivers felt that telehealth visits with their child’s doctor was more difficult to understand the current health care concerns virtually. Staff described technology barriers that included: lack of computer equipment (81%), lack of reliable internet (77%), and lack technological capability (79%). Staff and caregivers described previous disaster planning and preparedness was focused on emergency contacts and legal preparations for guardianship, and many were not prepared to navigate the sudden disruption of services due to the pandemic.

Conclusion and Implications:

The COVID-19 pandemic shifted the way all families have received services and presented many challenges, and a few opportunities, for CSHCH and their families. Overall, its impacts to service delivery exacerbated the existing challenges to accessing care for CSHCN. While the shift to virtual services allowed for some services to continue, it also revealed virtual services is not equitable due to the lack of technological infrastructure, particularly in low-income, rural regions in Texas. However, when appropriate, virtual support could benefit some CSHCN families and staff. Disaster planning should be revisited with the pandemic experience in mind, and work towards building support for families around the disruption of services.