As federal and state policy makers make plans for infrastructure and budgetary spending, let’s not forget to invest in the infrastructure of care too, particularly for children with disabilities.
The framework of support that makes it possible for families to care for children with complex care needs safely, in their own homes and in their local school systems, is part of our infrastructure of care.
Throughout the pandemic, medically fragile children in California’s pediatric long-term care facilities and their parents have endured drastic limits on their ability to see and interact with each other. Some locations barred parents and other caregivers from visiting their children in person for over a year, citing virus safety precautions.
Advocates and parents said they’re concerned that visitation policies at pediatric subacute units during the pandemic may have caused long-term harm to kids.
Parents of children with fragile, medically complex disabilities are expected to provide the same level of care during emergencies that intensive care units provide, but they’re expected to do it in the home.
The stakes are high: If you make a mistake, your child could die. That’s not a comforting thing to tell a new parent of a fragile baby.