Supports and service systems used or needed by families of people with intellectual disabilities and mental health needs during the COVID-19 crisis

Abstract

Introduction: People with intellectual and developmental disabilities who have mental health needs (IDD-MH) are at risk of crisis and rely on supports provided through services systems. COVID-19 added an additional layer of complexity for people with IDD-MH and their caregivers to access services, particularly for those who may experience service disparities secondary to race, ethnicity, or linguistic differences. Our aim was to identify the supports and service systems used or needed by caregivers of people with IDD-MH at the beginning of the COVID-19 pandemic.

Methods: START is an evidence-based model of services and supports for high-risk people with IDD-MH. The Center for Start Services distributed the “COVID-19 Family Survey” from 3/15/2020- 7/13/2020 nationally to 1413 caregivers of people with IDD-MH (M age=21.4 years, range 4-67.5; 69.6% mild-moderate ID); data were entered into a centralized database, de-identified and exported for analysis. Informed by the convergence of cultural contexts framework, a team of six reviewers independently coded unique services or systems referenced in caregiver open-ended responses. Discrepancies were resolved through consensus discussion. First, we coded data of caregivers identifying as Black/African American, Asian, or Latino/Hispanic of any race (45.6%). Second, we coded data of caregivers identifying as White (alone) (54.4%). Third, we examined code frequencies to identify unique and shared experiences across caregivers.

Results: Across both samples, caregivers responses most frequently referenced navigation of disability services (~ 40%), START services (~ 30%), and education services (~ 20%). For many, services were disrupted abruptly due to COVID-19. About 30% of caregivers expressed the need for or use of two or more services. White (alone) caregivers express more concerns with changes in rehabilitation services provided during COVID-19 compared to caregivers of other races and ethnicities. Black/African American, Asian, or Latino/Hispanic caregivers more frequently reference telecommunications, financial (e.g., unemployment, social security), housing and food systems compared to White (alone) caregivers. Our poster will include direct quotes that demonstrate caregivers’ use and need of each of these supports and service systems.

Conclusion: Caregivers of individuals with IDD-MH at high risk for crisis invest time and effort to navigate complex and disaggregated systems to access needed supports (Goode et al., 2017). During the COVID-19 crisis, families continued to use or need numerous supports across multiple service systems. This analysis of START data also demonstrates the need for supports and service systems, including rehabilitation, to be flexible and identify ways to safely continue services even during public health emergencies, like COVID.

Funding: PCORI Engagement Award (EA #15364).