When President Trump first announced tariffs on most foreign imports, Jennifer McLelland checked the packaging on her son’s medical supplies.
As a parent of a child with complex medical needs, McLelland argues for tariff exemptions on medical supplies that cannot be purchased from U.S. manufacturers.
Amidst a nationwide shortage of pediatric specialists, families caring for children with special health care needs in rural areas are often forced to travel long distances for care.
Physicians and parents agree that on top of bringing more specialists to rural areas, increasing the flow of information between agencies and making travel reimbursements easier to attain would ease some of this burden on families.
The Affordable Care Act has saved countless families with medically complex children, including columnist Jennifer McLelland’s. Her son was born without a functional airway and quickly racked up more than $1 million in medical bills. The ACA protected her family– but these protections are not guaranteed.
The developmental disabilities service system is developing a Master Plan for Developmental Services.
We want to create a plan focused on equity for a community that is as diverse as our state. It should build on lessons learned over many years to create meaningful improvements to the systems that serve our community.
California has a variety of programs aimed at supporting the health care needs of children with complex disabilities. But accessing and utilizing these programs is complicated and time consuming.
The California Health Report spoke with several experts and disability advocates about what can be done to ease the burden on families and ensure children with disabilities get the care they need.
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.