Since the start of the COVID-19 pandemic, finding nurses to care for medically fragile children at home has become extremely difficult, according to parents of children with disabilities and home health agencies.
The shortage has prompted calls for California’s governor and legislature to increase Medi-Cal reimbursement rates for home nurses by 40 percent.
For young adults with serious disabilities, the transition to adulthood is filled with challenges. In interviews with the California Health Report, young people and their families described the difficulties and triumphs they’ve experienced during this phase of life.
Overall, young adults with disabilities, their parents and advocates said too many families don’t know what to expect, or how to get the services they need. Health officials, regional centers, and school districts need to foster more awareness about what it’s like for these youth to transition to adulthood, they said.
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.