medically fragile children

Analysis: You Can’t Surf With a Ventilator. The Problems with AI in Health Care, and Some Solutions

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.”

How Families of Children With Disabilities Can Find Support

Caring for children with special needs is demanding work. Without adequate support or rest, parents can end up feeling depleted and alone.

The solution, according to experts and parents who have faced these challenges, is to reach out for help, connect with other families of children with disabilities, and prioritize self-care.

For Medically Fragile Kids, Access to Palliative Care Depends on Family Resources

For children with complex medical needs, palliative care can offer physical relief and also support to families.

However, systemic failures such as a shortage of places that offer palliative care services for children, and also a shortage of physicians who do this work, lead to long wait times and administrative hurdles. The issues with the system, according to experts, can be fixed.

Analysis: When the Power Goes Out, These Devices Save Lives. More Californians Need Them

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.

Analysis: The Formula Shortage Is Also A Disability Rights Issue

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.

How Families Are Advocating for Children with Disabilities in Foster Care

Many families that foster and ultimately adopt children with disabilities encounter challenges such as receiving insufficient medical supplies to care for the children and incomplete information from child welfare agencies about the children’s health histories.

Foster families and their advocates are working to mend the gaps in the system that can cause undue stress on these children who, in most cases, have already been through trying times before coming into foster care.

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