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.
Climate change is a growing threat to people with disabilities. Not only is the weather getting hotter, but Californians are facing more frequent wildfires, poor air quality, evacuations and power outages. These events are particularly difficult to navigate for people with complex medical conditions and those who care for them.
Yet, researchers and policymakers have historically overlooked this vulnerable population when it comes to emergency planning.
After almost 10 months of staying home, some of these families have settled into the new reality and are receiving better support. Some have found creative ways to adapt. But others are still struggling to get their children the help they need.
How well families are doing depends a lot on their resources, both relational and financial. To help families that are struggling, lawmakers need to provide greater financial support such as stimulus payments, food subsidies and rental relief, advocates said.
Many parents of children with special needs — regardless of race — struggle to receive prompt diagnoses and services. But for families of color, the challenge is more acute.
“There’s just a lot of systemic racism,” said Kausha King, director of the Community Empowerment Project, a program that provides navigation support and training to Black families of children with special needs in Alameda and Contra Costa counties.
Amid the COVID-19 pandemic, demand for ventilators and accessories has soared. As a result, families caring for medically fragile kids are being forced to ration and even reuse parts.
At least 3,000 children in California rely on ventilators, according to the California Association of Medical Product Suppliers, and many of them are facing a shortage of the supplies that help keep them alive.
Even though children in general are less likely than adults to develop serious illness from the coronavirus, that may not be the case for kids with compromised immune systems and complex health care needs, medical experts said.
Still, families of children with complex health care needs are, in some ways, more prepared than others to handle the threat of coronavirus infection. Hand washing, disinfecting and caution about venturing outside are already a reality.
Across California and the country, families with children with complex medical needs struggle to find qualified nurses to care for them. Historically low pay rates for home health nurses, a lack of pediatric training for in-home situations, and a disjointed system for finding caregivers has left many families without the nursing care their children desperately need and are entitled to, experts said.