No Plungers Allowed: On the injustice of lawsuitphobia trumping the rights of an 8 year old.

Short version first: sign this petition!
Long version second: Sign this petition to help encourage a school district to move past its fear of a lawsuit, and allow a child to both eat lunch with her peers, AND follow the instructions of her medical care provider. The bullet points are thus: Bonnie can’t take food orally. She consumes her food through a tube in her stomach. There are different ways of delivering food through a g-tube, and this is because (and here’s the important part) not all ways work for all people. It’s a trial and error thing. For Bonnie, what works is having her food administered via something called the push/plunge method. This is basically using a medicine syringe on steroids to push the food into the tube.

The school says that this is not allowed because of ‘safety reasons’, though it’s been just fine for the last 4 years, since Bonnie was in kindergarten. She’s now in third grade.   They forbade her Aide to administer the feeds in the method outlined by her care provider, saying instead, that gravity feeds, (basically an open container attached to the tube and held higher than the delivery point, letting gravity ‘drip’ the food into the stomach) or the use of a feeding pump (problem there, being feeding pumps don’t work for all feeds, and Bonnie’s blends are incompatible with pump feeding), were the only methods of acceptable food delivery. Additionally, they placed a further restriction, refusing to allow Bonnie’s mother to come to the school and administer the food herself in the cafeteria; instead, they insist she take Bonnie off the school’s property, before beginning the meal.

The unspoken fear, of course, is that something could go wrong, and there could be a lawsuit. But this method of g-tube feeding  has been used successfully on premature infants, and adults, and every age block in between. Clearly, it’s working for Bonnie, so the change in district policy doesn’t seem to be evidence based.  I’m not a nurse, or a doctor, and I don’t even play one on TV, but I do know how to use the Google, and in about 10 minutes, found a variety of peer reviewed abstracts supporting the use of the plunge method.  I understand that the school wants to keep Bonnie safe, while also mitigating the chances for litigation, should anything go wrong.  The concerns seem to be wildly unlikely instances: that Bonnie’s stomach might explode, (Really.  Someone said that.) or that a blockage may occur, and be unnoticed by the person administering the feed and other unlikely occurrences.  I’m not saying it’s impossible, mind.  Anything’s possible.  But the exploding stomach scenario (which, I’m assuming, is referencing the possibility of the tube being misaligned, and delivering the feed outside of the intended target), is predicated less on the syringe part of the apparatus, and more on the placement of the tube.  In other words, it wouldn’t matter where the food was coming from, if the tube was in wrong.   And blockages happen with gravity feeding, and with pumps, and most tubes come with instructions on how to prevent blockages, and include best practices on how to resolve blockages, should they occur.  

To compare, this would be a little bit like saying that kids who consume food in the traditional oral manner can’t eat on school property because they might choke, or have an allergic reaction.  Except, of course, that choking and allergic reactions are far more prevalent than blockages that don’t get noticed, or exploding stomachs.  I mean, honestly.  If somebody’s stomach exploded, it’d be a bigger HuffPo story than anything relating to Kim Kardashian, amirite?

Al Fresco dining loses its novelty for 8 year old Bonnie

So Bonnie’s lucky, though, because she has awesome family, who go to her school, and set up a card table, along with a portable heater,  and do the whole lunch thing across the street, so that Bonnie doesn’t have to miss out on school–just lunch.  This whole unfortunate debacle has dragged on since February.  Let’s think briefly about February in Oregon, and then let’s all give Bonnie’s mom, Beverly, a round of friggin applause for not just throwing in the towel and homeschooling, because snow.  Of course, the first couple of days of eating in the street were awesome for Bonnie.  Her parents were there, it was new, and different, and they did what they could to make it fun and comfortable for her.  But she’s 8, and the novelty wore off fairly quickly, replaced by an urge to go eat with her friends, ‘”like normal.”

That’s the thing, isn’t it?  There are so many things I know I take for granted, because my kids are largely within the ‘norm’.  School is held up as the great normalizer.  Whole studies have been done on the benefits of sending kids with special needs, or chronic or terminal illnesses, or who are otherwise medically fragile,  to school.   Bonnie’s condition is known as arthrogryposis, and it’s a congenital disorder than can manifest in a variety of ways.  Some of them are pretty bleak–when Bonnie was born, doctors told her parents that she may never be able to sit up in a wheelchair on her own.  But Bonnie beat those odds, and now she’s sitting up at a cafeteria table, on her own.  Or at least, she was, before the school district changed its policy.

So let’s help Bonnie beat the odds again.  Let’s send a message not just to the school district in Oregon, but to public schools across the nation, that care plans devised by medical practitioners should be adhered to by schools.  It’s admirable that schools are taking steps above and beyond to make sure that kids are safe, but the last I checked, you didn’t need a medical degree to become a Superintendent.  There are some decisions that can’t be made via committee meeting, and individual care plans are among them.  Section 504 of the Rehabilitation Act has changed the lives of countless kids, by insisting that, if a school takes federal funding, they’re required to make accommodations for special needs students.  Well, that’s a paraphrase.  The relevant bit goes thusly:

Section 504 states (in part):

No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service.

So even if we’re assuming that this is an issue outside of the scope of IDEA, or ADA, that tiny sentence about *any program or activity* would most certainly include a school that participates in a free/reduced lunch program.  So even if Bonnie isn’t eating a school lunch, I’d say she’s covered from exclusion by the simple fact that the lunch period exists, and is paid for at least in part, by the government.  I’m not a lawyer, and I don’t know for sure, but that seems to make sense to me.   Regardless, though, isn’t it the RIGHT thing to do?  Let’s pretend, for a minute, that America hasn’t become a nation of people raised on the pabulum of The People’s Court and the OJ trial, where every decision is weighed and measured against the Dementor-like specter of some sort of litigation.  Is it right to segregate a child from her peers, because you disapprove of her food consumption?  Next, shall we send vegetarians out to the garden only?  Kids who chew with their mouths open to feast around the dumpster?  Picky eaters will, of course, be sent home, because ain’t nobody got time for that.  If it’s not disapproval, then perhaps it’s “concern”.  So, shall we segregate those vegetarians we’re concerned about because what if they don’t have a complete protein in their lunch? The open-mouth chewers because they might choke from eating too fast, or taking too big of a bite?  The picky eaters because hypoglycemia and malnutrition are scary possibilities!  Put in that context, it sounds kind of stupid, right?  But there’s a saying, “what has 12 legs and no brain?  A committee.”  Sometimes, people get blinded by paperwork and policy, and they forget about the people they’re serving.  I like to believe, and call me Pollyanna about it all, but I like to believe that if you give people the chance to do the right thing, they’ll take it.  And in this case, I think it might take more than just one tired mama fighting for her kid.

So if you’ve made it this far, congratulations on having an attention span I envy, and thanks!  If you agree, sign the petition, and maybe share it with your friends.  And tell them to share it.  Because the bottom line is, just because it’s not our kid, or our school district right now, that doesn’t mean it couldn’t be in the future.  So let’s help Beverly and Bonnie now, and change things for our kids and grandkids in the future.

*You might notice that this article has achieved a level 10 in linking to outside sources.  I have a few friends who’ve got tube-fed kids, so I had a basic grasp of what was going on with Bonnie.  However, I figured it wouldn’t hurt to provide some info for peeps who needed a crash course.  Feel free to take advantage of my google-fu to assist in your decision making.  That’s what it’s there for.  :)

 

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