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.
Children who need medically intensive care cannot attend traditional day care programs. California has an option for these kids, called Pediatric Day Health and Respite Care facilities.
But the amount the government pays these facilities to care for children has not kept pace with inflation and rising staffing costs. Because of the stagnant rates, California’s pediatric care facilities are in danger of closing.
Our house lost power a few nights ago, during one of 2023’s record-setting storms. For our family, losing power is a medical emergency.
But on this occasion, for the first time, I had access to a portable power station. Portable power stations are rechargeable batteries that can provide hours of backup electricity, which is especially important for people who use medical devices or assistive technology.
As an abled parent of a disabled child, I’m learning to help my son manage accessibility burdens because our communities and institutions aren’t designed with him in mind.
We can do better for children with disabilities by building more accessible, more inclusive communities and by teaching them how to assert their rights in situations that aren’t in compliance with the law.
I made the choice to continue a high-risk pregnancy, but I honor the choice of any pregnant person who opts to terminate given the same set of facts.
What I don’t like is seeing ableism — that is, prejudice against adults and children with disabilities — rolled into discussions about abortion, as has happened often since the U.S. Supreme Court overturned Roe v. Wade.
The baby formula shortage wreaking havoc across the United States is terrifying for any parent who relies on infant formula to feed their child. It’s especially calamitous for babies and children with special health care needs who rely on special prescription formulas that have also been impacted by the supply shortage.
The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life supporting products and equipment.