Caregiver burnout, gaps in care, and COVID-19

Abstract

Conclusion This case showcases the damage to individuals and families, and the costs to society, when we do not work in proactive ways to plan for and identify warning signs of impending crisis, attend to developmental transitions for all members of the family, and respond quickly to support families with autism and intellectual disability in times of crisis. A.T.’s story began long before the pandemic and illustrates considerable chronic gaps in our system of care. Family physicians, pediatricians, and allied health professionals need to work together to bridge these gaps and advocate for these families to be supported by services that are essential to them and will allow them to care for their dependents in a sustainable way. Notes Editor’s key points ▸ The coronavirus disease 2019 pandemic is exacerbating the stresses on patients with autism and intellectual disability, as well as on their families and caregivers. Acknowledging and validating caregiver burnout is a critical part of care for this population that needs to be prioritized in routine care. ▸ Respite care should be considered an essential service for this population, particularly during pandemics and other types of emergencies, owing to the complexity of care needs. Greater capacity needs to be built into the care system to address the needs of people with autism and intellectual disability as they age into the adult system. ▸ Caregiver capacity and well-being must be kept at the forefront of developmental care, with a continued focus on family rather than only individuals.