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.
California’s regional center system the system has struggled to provide services to Spanish-speaking families at the same rate it does to English-speaking ones.
Claudia Harty with Parents Helping Parents, a San Jose-based organization that works to connect families with services, shares ways to improve outreach to Latinx families of children with special health care needs.
Tens of thousands of California children with developmental delays aren’t diagnosed until they hit the school system. For children whose delays are detected late, the ramifications can be lifelong. That’s because interventions such as behavioral, physical and speech therapy are often most effective when started during the toddler years.
Billions of connections are made in a young child’s brain. Research shows between 85 and 90 percent of brain development occurs before a child turns 3.
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.
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.