Decreased access to therapeutic services for children with disabilities during COVID-19 stay-at-home orders in Western Pennsylvania

Abstract

PURPOSE: Assess the effects of stay-at-home orders on access to services utilized by families of children with disabilities (CWD). METHODS: Cross-sectional weekly surveys were fielded over four weeks, during which western Pennsylvania was under stay-at-home orders. Respondents were divided into families of CWD (N = 233) or without CWD (N = 1582). Survey questions included measures of socio-economic status, and families of CWD answered questions regarding access to services pre and post-initiation of stay-at-home orders. Differences between families with and without CWD were analyzed using chi-square tests. RESULTS: Among families of CWD that had used services previously, 76.6% of survey respondents stated that they had decreased access, with the greatest percentage experiencing loss among those previously utilizing early intervention (75.5%), outpatient therapies (69.1%), or school-based therapies (80.7%). Compared to families without CWD, families of CWD were more likely to report lower pre-COVID-19 annual incomes (p < 0.001), job or income loss related to COVID-19 (p < 0.001), and higher levels of perceived stress (p < 0.001). CONCLUSION: CWD experienced loss of services during stay-at-home orders implemented as COVID-19 mitigation measures. Due to decreased access to needed services, CWD may be at risk of medical complications and loss of developmental progress.

Caregiver perspectives on the continued impact of the COVID-19 pandemic on children with intellectual/developmental disabilities

“…More than 8 in 10 caregivers also reported interruptions in their child's progress toward IEP or 504 plan goals. These findings are consistent with literature earlier in the pandemic where caregivers reported disruptions in school-based services and subsequent declines in their child's functioning due to the COVID-19 pandemic ( 13 – 17 ).…”

“…Several studies surveying caregivers of children with IDD assessed changes in access to educational and therapeutic services due to the COVID-19 pandemic. A Family Strengths Survey disseminated in Western Pennsylvania indicated that 76% of families of children with disabilities had reduced access to early intervention services and 81% had reduced access to school-based therapies due to COVID-19 school closures ( 13 ). In a different survey examining special education services, 60% of caregivers reported that following school closures, their children received fewer special education hours and a significant decrease in the number of related service hours compared to what they were supposed to receive, as indicated by their individualized education program ( 14 ).…”

Impact of the COVID-19 pandemic on early intervention utilization and need for referral after NICU discharge in VLBW infants

“…The adjusted odds of neonatologist referral was more than three times higher during COVID- While the restrictive nature of SAH measures and resultant social isolation may have exacerbated developmental considerations for preterm infants, environmental stressors likely placed an additional burden on these families. Survey studies on caregivers of children with disabilities have echoed such concerns, reporting uncertainty regarding the long-term impact of COVID-19 on their children's development and feeling overwhelmed with the disruption of essential services and therapies (10,11,13). They additionally reported higher levels of stress, more job and income loss, decreased wellbeing and more sadness or anxiety experienced during COVID-19 -all factors that affect the stability of the home environment and potentially worsen developmental outcomes (10,11,13,21,22,23).…”

“…Survey studies on caregivers of children with disabilities have echoed such concerns, reporting uncertainty regarding the long-term impact of COVID-19 on their children's development and feeling overwhelmed with the disruption of essential services and therapies (10,11,13). They additionally reported higher levels of stress, more job and income loss, decreased wellbeing and more sadness or anxiety experienced during COVID-19 -all factors that affect the stability of the home environment and potentially worsen developmental outcomes (10,11,13,21,22,23). Therefore, we are not able to disentangle the effect of teletherapy from increased neurodevelopmental need due to environmental stressors.…”

“…As SAH guidelines differ by state, some variability in the magnitude of the impact of COVID-19 on EI services is likely to exist across states. However, multiple studies have demonstrated signi cant disruption or delay of therapeutic services for children with disabilities during COVID-19 both in smaller geographic regions and nationwide(9,10,11,12,13).An additional stressor placed on the study population was the switch to teletherapy, with most infants receiving at least one teletherapy during COVID-19. The SAH restrictions during COVID-19 placed an unexpected responsibility on EI providers to abruptly switch to teletherapy sessions, many of whom had no experience in telehealth delivery.…”