Suppliers and parents began reporting shortages — most notably of ventilator circuits — early in the pandemic. Now, they say the problem is ongoing and kids are paying the price.
Based on national estimates, it’s likely that California is home to about 35,000 children with medical complexities, although no one tracks state-specific data. These are children with chronic conditions that require significant medical attention and specialized equipment, such as ventilators.
To get services for their children, parents often must navigate a dizzying array of health care providers, special education entities and insurance programs, often with little support or guidance.
By the time these children receive treatment — which is often contingent upon getting a diagnosis — they may have missed out on a critical window of time during which interventions can be most effective.
As California launches widespread screening for adverse childhood experiences, critics question the science, and the consequences.
While few doubt that severe stress in childhood can lead to ailments later in life, tools used during doctors’ appointments are described in prominent scientific journals as inappropriate and unethical, oversimplifying human experience and straining doctor-patient trust.
Thousands of parents across California are caring for children with physical, behavioral and developmental conditions. They typically rely on a small army of teachers, therapists, nurses and other caregivers to get through the week. But that has been stripped away due to the COVID-19 pandemic.
Parents are feeling isolated, stressed and overwhelmed at a time when families need more support than ever to deal with a loss of routine, heightened anxiety and other challenges.
As COVID-19 disrupts the transition from early intervention to school, children are going without occupational, physical and speech therapies and other services they’re entitled to.
The danger, advocates for children with special needs said, is that these kids are missing out on interventions at a critical moment in their lives. Since mid-March, California’s complex special needs care system has struggled to move children from one program to another, parents and advocates said.
Home visitors provide one-on-one outreach to parents who may be struggling to care for their children, often because of stressors such as poverty, or who simply want guidance.
Home visiting can help counter inequalities, which arise from structural racism and economic disadvantage. Yet fewer than 2 percent of potentially eligible families statewide receive home visits.
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.
The complicated system creates a disparity where children from families without the means to pay for medical equipment out of pocket often must go without it for months or years, limiting their interactions with their community or setting them up for poorer health outcomes compared to their wealthier peers.
The equipment families seek includes lifts, wheelchairs, walkers, ventilators and hospital beds.
Under a state law that took effect in January 2018, counties are no longer supposed to charge fees to youth involved in the juvenile legal system, or their families.
However, a recent study found that some counties continue to illegally collect some prohibited fees. Others are chasing young people and their families for debts they incurred before the law took effect.
California health officials are gearing up for the launch of a statewide screening effort that aims to help doctors measure children’s exposure to trauma and their risk of related health problems.
Starting Jan. 1, California will become the first state in the nation to reimburse health care providers who screen patients enrolled in the Medi-Cal program for “adverse childhood experiences” or ACEs.