California’s system for providing durable medical equipment and supplies at home is complicated and difficult to manage, even in normal times. During the COVID-19 pandemic, rationing and supply chain disruptions have made things impossible for families of children with special health care needs.
I believe California needs a state oversight office for durable medical equipment to give families and patients a way to resolve problems before they cause harm.
The COVID vaccine for children is safe and effective, and it’s the best way to protect not only children but also the larger community.
Was I concerned about the risks of the vaccine? No. COVID is a far greater threat to my son, who has to go to the ICU when exposed to the kind of germs that give healthy kids the sniffles. The vaccination also benefits my healthy daughter, who won’t have her schooling interrupted by quarantines.
We made the decision to send our son back to in-person school last year despite his vulnerability to infection because our district came up with a reasonable, safe plan to make it possible: Every student had to wear a mask.
Just as we were gearing up for a mostly safe year back at school, the Clovis Unified school board decided to snatch defeat from the jaws of victory and create unnecessary confusion over which mask policies would be enforced, despite clear state guidance.
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.
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.