Special Needs and Medically Complex Kids in the News
Medically complex kids can lead fulfilling lives. That’s one of the messages conveyed in a recent Morning Edition NPR article. It profiled Kara Doderer, a 15-year-old who lives with lupus and congenital central hypoventilation syndrome (CCHS). People living with CCHS require a mechanical ventilator to breathe. But that hasn’t kept Kara from being a straight-A student, a dancer, musical theater performer, and a harpist.
Special Needs and Health Care for Medically Complex Kids
The article conveys other messages, too. The high cost of medical care for medically complex special needs, for one. For another, the difficulty of navigating the medical/insurance systems in our country. And finally, the importance of parent who advocates effectively within those systems. That’s something Kara’s parents are equipped to do because Kara’s mother, Marcy Doderer, is the former CEO of the children’s hospital in San Antonio and now runs the children’s hospital in Little Rock, Arkansas. Even so, the Doderers say Katie’s care has been scattershot, and when they have to cross state lines for care, her Medicaid doesn’t follow her.
Special Needs Controversy about Medically Complex Kids
The article generated a wide range of comments about the article Kids with Costly Medical Issues Get Help, but Not Enough. It’s been cited at other sites, too, like the Lucile Packard Foundation for Children’s Health. Of course, many of the comments relate to the health care controversy raging in our country. Since one of the goals of this blog is to unite parents of kids with special needs, if you want to wade into the controversy check out the story at the NPR site and leave your comments there.
Special Needs Shout Outs
However, if you want to brag on your child with medically complex special needs, you are in the right place. Tell us about your child in the comment box below!
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By Jolene
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.
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I have a medically complex child. Born with lots of issues, yet she shines through all of them. Amazes me! We live in Canada, and while there is lots of criticism of our medical system, we’re so grateful to have the assistance. Honestly, I have no idea what we’d do if we didn’t have such coverage!
It’s been a rough road, and would be far worse, if not for the medical system and first and foremost our daughters amazing attitude through all of her medical issues.
Suzanne
Canada
Barb, you are most welcome. Thanks for the links to websites that deal with medically fragile kids and rare diseases. In case readers are wondering, Rare Disease Day is February 28. Also rare diseases include several well-known ones, like the hemophilia Barb’s son lives with. Also included is EA/TEF, the condition my son has.
Jolene, as the mother of children with medically complex issues, I want to thank you for shining a light on the costly treatment of kids like mine. I might also encourage your readers who have an interest in this topic to join together with me and many others at the Global Genes Project (http://globalgenes.org/) and Rare Disease Day USA (http://rarediseaseday.us/) as many of these medical complexities are considered rare and/or genetic in nature.