Sunday, December 4, 2011

Should Food Allergies Qualify as Special Ed? One Parent's Story...

Almost a year ago we wrote about the good times we had with the NYC Department of Education trying to get a school for our daughter.  Truth be told, they did us the biggest favor in the world, as mini is at a fabulous school: she's safe, healthy and thriving.


A public service message to kids with medical needs who can't attend school without help: if you're not behind academically there's no school for you!
But we couldn't let it go.  See, NYC's ignorant and dismissive attitude towards food allergies is going to get some poor kid killed one day.  It is a known fact that the majority of children with food allergies WILL have a reaction at school.  Furthermore studies have shown that the single biggest factor in determining whether or not a child's reaction was fatal was access to an epipen and time to administering.  Therefore it does not take a rocket scientist to figure out that one must keep an epipen near a child with food allergies at all times, just in case.  It's an easy thing to do to prevent death.  After all, we already incorporate other things that may once have been perceived as "inconveniences" into our daily routines should the worst happen: sprinklers, seat belts, choking signs, fire extinguishers.  Have you ever seen a school that said "nah, we don't need the free sprinklers you're handing us, we've never had a fire.  You may have expertise in fire prevention but we've been preventing them for years and know we won't have any."

We didn't think so.

So why is it so hard for city officials and school administrators to wrap their heads around the simple fact that 5 minutes of training for all their staff plus easy access to epipens will bring peace of mind and evade a serious tragedy?  Seriously, you can watch one YouTube video and be trained, it's that simple.  And you can't even hurt someone by accidentally using the epipen.  And if you're still not convinced, think of it as a public health necessity: almost half of food allergic reactions at schools occur with children who were never diagnosed with any kind of allergy.

New York may not take it seriously but our federal government is.  There is a bill being proposed that would require schools to carry epinephrine, not just as prescriptions for individual students, but several injections of epinephrine not locked up, not in the nurse's office, easily accessible just in case.

And this is all we asked for.  We did not ask for a nut free school.  We did not ask for a curriculum change.  We did not ask the school to spend any money.  We simply asked the school to take a little time and meet with us to develop a plan, train its teachers, and ensure an epipen is available in any room our child would be in.

Clearly this was too much to ask.  So we asked for an IEP.  504 plans are great but they assume you had a say in what school you're at and therefore don't give you the right to move schools.  Kids with special needs should have the ability to say "hey, this school doesn't meet my needs, but this school does, so please move me."  Other kids have that right.  Kids with mild speech delays and an IEP have the right to switch schools.  Children with wheelchairs, hearing aids, etc. may switch schools if one is better suited to their needs.

But food allergies, while classified as a disability according to the ADA, falls under that vague non-specific area that until now has been interpreted as falling under 504 for most cases.  Except most cases assume the parents actually had a say in the school they choose to attend.  Studies in Massachussetts documented families moving to different school districts simply because they felt the new school would better accommodate their child's food allergies.  This happens all the time.

But due to a loophole mini didn't have that right.  She was "waitlisted out" of her zoned school, sent somewhere else, and her parents weren't even allowed to tour the school before registering.  So when we found the administration hostile to the accommodations we requested (the phrases "you're crazy," "I don't have time for this" and "we have children with real medical issues" were carelessly tossed about by the principal), we concluded that a 504 would simply not be enough.  According to many leading food allergy advocates:


No matter what the content of your school's plan for your child's safety, the biggest factor in your child's safety is the quality of communication and trust between parents and school staff.[1]

Thus, we naively assumed that when we brought all of the above information to the attention of the special ed committee, they would grant her an IEP so that she may be placed in a school better suited to her needs (in this case, one where the principal actually took the condition seriously).
Readers will know the result.  Six months after applying, we finally had a meeting, and were denied an IEP on the grounds that mini was too smart.  The conclusion: the medical condition was not affecting her grades, therefore she did not qualify for assistance.

You can imagine our horror.  Here we were telling administrators that without their intervention it was not safe for our daughter to set foot in a school for even half a day, and 4 months had gone by with her not being able to attend school the whole time, yet this was not enough to show "affect on learning".  What, we wondered, did children with other disabilities do if they were smart and resourceful? Would a child in a wheelchair be denied ramps if their grades were good?  Would a deaf child be denied an interpreter necessary to do well in schools if they were developmentally appropriate in all other areas? Would a diabetic be denied an IEP and transfer to a school with a full time nurse if they were academically at par with their peers?

Most of all, what really kept us up at night was "What if we weren't fortunate to have the resources we have?"  What would happen if another child found themselves in mini's shoes but the family could not afford an independent school as an alternative?  The parents would have to choose between home-schooling their child (which some parents of children with multiple food allergies are known to do), or risking their kids' lives every day.  We've heard stories of mothers going to the cafeteria every day at lunch to ensure their kids' safety, but what if you have to work?
Clearly, there were many, many kids risking their lives in the NYC school system every day and it was only a matter a time before tragedy struck.

So we sued.

If we didn't say anything, who would?

And we lost.  Friday we were informed that the judge upheld the claim that our child was not eligible for an IEP, solely on the grounds that she was not academically behind.  There was no dispute she had special medical needs, and had we kept her out of school long enough for her to fall behind, they'd grant it. 

So, for those of you out there with babies who have any kind of special need, if you're wondering how you will go about getting special accommodations for your child, fret no more! All you have to do is ensure your child is not performing at grade level and you can ensure they will get what they need!  Do not read to them! Do not let them play with other children! Do not play with shapes, colors, blocks.  Think of all the money you'll save on mommy and me classes!!  Think of all the time you'll save thinking up activities since you can just plop them in front of the TV all day!

Some will tell you to run in all kinds of circles, get a special education attorney, etc. to advocate for your child.  Learn from us! Save yourself the money.  As the judge's recent decision states: if your child performs below grade level for any of the academic tests, they will qualify for any service they need!  

So there you go, peeps.  Special education has been distilled into one, easy uncomplicated answer.  Prevention is a waste of society's time, it's all about being remedial.  You heard it here first.
Meanwhile, we'll be looking for ways to lobby for better laws.  We probably should give up saying "we fought the good fight" but we can't shake the nagging feeling of knowing something's wrong and that someone will get hurt if nothing is done.  
Other states have much better policies in place than New York.  It's time the policies were updated to focus on their original intent, which we presume is to actually educate our kids. 

No idea where to begin here.  Suggestions welcome.





[1]              Ellie Goldberg, food allergy advocate.  Also see Take Steps to Ensure Your Child has a Safe School Year, available at, http://www.kidswithfoodallergies.org/resourcespre.php?id=137and Communication Crucial to Protecting Food-Allergic Children at School, available at, http://www.nationaljewish.org/about/mediacenter/pressreleases/2010/food-allergic-children-school.aspx, quoting, Michelle Freas, coordinator of medical and health services at Kunsberg School on the campus of National Jewish Health (“Most parents do an excellent job during the summer of isolating their children from foods they’re allergic to, but when they go back-to-school they lose control of what their kids are exposed to.  The key to protecting food-allergic kids at school is communication with the school.”)

2 comments:

Anonymous said...

NY does have policies/rules. Not sure if they apply to NYC schools.

Google:
Making the Difference - Caring for Students with Life-Threatening Allergies

I also suggest you visit wrightslaw.com for info about 504 plans and how they apply to food allergies.

Poker Chick said...

Hello Anonymous poster, thanks for your response! We are very familiar with the "Making a difference" document, which is fabulous. Sadly, it seems no educators in NYC that we have met are familiar with it, and the principal of mini's registered school outright violated about half of it without caring. Hence the issue with 504 alone not being sufficient recourse for FA.

We know FAI was instrumental in helping to write that document, perhaps they can help with creating awareness/training so it's actually followed?