Children who need medically intensive care cannot attend traditional day care programs. California has an option for these kids, called Pediatric Day Health and Respite Care facilities.
But the amount the government pays these facilities to care for children has not kept pace with inflation and rising staffing costs. Because of the stagnant rates, California’s pediatric care facilities are in danger of closing.
Our house lost power a few nights ago, during one of 2023’s record-setting storms. For our family, losing power is a medical emergency.
But on this occasion, for the first time, I had access to a portable power station. Portable power stations are rechargeable batteries that can provide hours of backup electricity, which is especially important for people who use medical devices or assistive technology.
As an abled parent of a disabled child, I’m learning to help my son manage accessibility burdens because our communities and institutions aren’t designed with him in mind.
We can do better for children with disabilities by building more accessible, more inclusive communities and by teaching them how to assert their rights in situations that aren’t in compliance with the law.
I made the choice to continue a high-risk pregnancy, but I honor the choice of any pregnant person who opts to terminate given the same set of facts.
What I don’t like is seeing ableism — that is, prejudice against adults and children with disabilities — rolled into discussions about abortion, as has happened often since the U.S. Supreme Court overturned Roe v. Wade.
The baby formula shortage wreaking havoc across the United States is terrifying for any parent who relies on infant formula to feed their child. It’s especially calamitous for babies and children with special health care needs who rely on special prescription formulas that have also been impacted by the supply shortage.
The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life supporting products and equipment.
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.