My son is able to live at home with our family, attend school and interact with the world because we live in a nation where disabled people have civil rights.
When I hear President Trump talk about eliminating diversity, equality, inclusion and accessibility, he’s not just attacking civil rights for disabled people — he’s sending a message to kids like my son that they don’t belong.
Health care and disability rights advocates are gearing up to make sure politicians understand that there is no way to cut Medicaid without hurting people who need care. Sharing real people’s stories will be key to that effort.
California Health Report’s disability rights columnist Jennifer McLelland offers her tips on how to tell your family’s story.
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.
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.
Congregate Living Health Facilities are a housing option for ventilator-dependent adults that balance independence with the need for medical care.
The problem is, there are not enough of these homes to care for all the ventilator-dependent adults who would benefit from them. And those homes that do exist mostly don’t accept Medi-Cal patients.
For me, the most important thing about the holidays is food. I love cooking almost as much as I love eating.
But that perception was challenged when my son, James, was born with medically intensive disabilities. I wanted my son to have a positive relationship with food, even though he is fed through a tube. To do that, I had to tackle my own emotional baggage about what it means to feed my family.
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.
Thinking of myself as a health care detective who is solving a mystery makes a frustrating process feel a little bit more interesting.
You have to figure out the motive, gather the evidence, interrogate the suspects, and put together a case.
For children with complex medical needs, many parents are told that institutionalization — care that is provided in a location other than home — is the only option.
While spending time in acute care hospitals may be unavoidable, more could be done to allow these children to stay at home, instead of forcing them to live in institutions.