I spent a recent afternoon querying three major chatbots on some medical questions that I already knew the answers to. I wanted to test the kind of information that AI can provide.
“How do you go surfing while using a ventilator?” I typed. It was an obviously silly question. But Meta’s AI suggested using “a waterproof ventilator designed for surfing” and “set the ventilator to the appropriate settings for surfing.”
California’s about to bail programs overboard as it works to keep the state afloat amidst a huge budget deficit. It’s a problem, and I’m concerned for some programs that help children with special health care needs.
But I wanted to take a moment to talk about something that I don’t often bring up. Overall, California has the best health care for children and youth with special health care needs.
California has a severe shortage of pediatric specialist doctors. The state has only one pediatric medical toxicologist for all 8.7 million children in California, for example, and one child abuse specialist for every 258,000 children.
The shortfall puts medically fragile children at risk for worsening health and missed opportunities for life-changing treatment and support. Many families wait months — and in some cases a year or more — to get appointments.
California has multiple programs that provide support to children with complex medical needs and disabilities. But accessing and making use of these programs is a minefield for many families.
Vivian Vasquez and John Hernandez discovered that for themselves after their daughter, Claire, was born with a rare genetic disorder.
It’s common for people with disabilities to have trouble accessing health care, but this problem is often overlooked. These challenges can affect people as they move from pediatric to adult care, and also as they age.
I’ve seen how disability and health intersect, both in my academic studies and through my own lived experiences as a person with disabilities.
The California Health Report spoke with disability rights experts and parent advocates about what families who speak a language other than English need to know about their rights when accessing health care and special education services, and tips on how to advocate for themselves.
Almost half of California residents speak a language other than English at home, most often Spanish.
Participating in extracurricular activities is hugely beneficial for children’s wellbeing and has been found to lower their risk of having depression and anxiety.
CoachArt is a nonprofit organization that helps chronically ill children ages 5 to 18 explore hobbies and skills through free classes, including painting, cooking, guitar lessons and martial arts.
Adults with disabilities no longer qualify for the same care, services and programs that they did as children. Instead, youth who turn 18 and their families must tackle a long checklist of tasks.
Yet with knowledge of the right resources and time to plan, this transition can be more manageable.
A critical program that medically fragile children depend on to get at-home care is broken, leaving families desperate.
This is a medical and developmental emergency for children with disabilities, and California needs to act quickly to fix it.
In 1996, a group of 10 Asian American families founded a support network for people with disabilities and their caregivers. The organization eventually became a nonprofit called Friends of Children with Special Needs.
Today it serves over 1,500 Bay Area families, about half of them Chinese American, and offers a variety of programs across three locations.