Medically Fragile Kids Aging Out of Care

Today an article appears in the NY Times entitled "For the Disabled, Age 18 Brings Difficult Choices."

I thought the topic of the article was very interesting, and important to bring to light. The piece was about very medically fragile children with multiple health issues and/or disabilities who live in rehab/palliative/chronic care children's hospitals. At age 18, the kids 'age out' and have to move to a different facility. The issue raised in the article was that, with few exceptions, the only place for them to go is a nursing home. These teens feel isolated and out of place surrounded by elderly folks. The article also mentioned that this is a new problem because new medical technology has enabled these fragile kids to reach adulthood.

If you've ever visited a children's hospital that is set up for long-term residents, you know that it is a special place. One I visited near San Francisco had murals painted down every hallway and in every room. The one profiled in the article has a huge game room and a school-style cafeteria. It's set up to nurture kids medically, physically, socially, and emotionally.

The photographer for the piece did a wonderful job of capturing beautiful shots of these kids and young adults in and out of the hospital. The photographer also followed a featured young man with multiple disabilities around on a typical day, capturing him doing everyday things. The photos were not taken in a beautiful place, but I think that the images themselves radiate beauty. Good on ya, Nicole Bengiveno, New York Times photographer!

To me, the article really left something to be desired. It profiled a young man named Sam, who has a brain injury from a bout of meningitis. The piece says that he has

"...only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy and able to slap high five."

OK, he smiles and gives a high five. Great. But one of the photos shows him flashing the "ILY" (I love you), and the caption states that he uses sign language! What the heck, NY Times? Sign language is good enough for thousands of Americans, but not for you? I feel like they should have slightly more knowledgeable reporters. To me this seems like cultural ignorance and ignorance of disabilities and disability issues. I can picture the author's next piece: "Renowned physicist Stephen Hawking has only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy, and yet not at all able to slap high five." Sigh.

The other thing that rubbed me the wrong way was this: One photo showed a table full of teenagers with various disabilities sitting around a lunch table laughing at a shared joke and eating, but nowhere in the article do they ask a young adult their opinion about aging out of the children's hospital. HUNDREDS of kids in the program and none of them could be asked to give a quote? Instead the piece talks to the parents and doctors involved in their care.

A story about minority health issues that doesn't mention the opinions or quotes of that minority? Ridiculous, and yet here it is. I think the word I'm looking for is paternalism.

I give this story a C+, and I give the photos an A+.

Image: Cartoon line drawing of a boy in a wheelchair, grinning and pushing wildly so his hair flies out behind him.

ETA: badcripple has another interesting look at this article on his blog.