Home > Health, Parenting > Epinephrine: Saving lives, when administered

Epinephrine: Saving lives, when administered

To the Honorable Ricardo Lara:

My son’s child care center does not “accept the responsibility of Nebulizer care or the administration of Epipen or similar injections.”

It refuses responsibility based on recent changes to Title 22, Division 12. It almost certainly does so with reference to the Community Care Licensing Divisions’s July 2015 Transmittal No. 15FCCH-01 (http://www.ccld.ca.gov/res/pdf/FCCH.pdf) describing administration of EpiPen as an “Incidental Medical Service” which “a licensee may choose to provide.”

Offering child care providers the choice to administer EpiPens means, conversely, they have the choice not to administer. My son’s child care providers are exercising this freedom to enroll severely food allergic kids at their centers while also choosing to withhold life-saving epinephrine from them. By this choice, they endanger the lives of the severely allergic children in their care. They do so in contravention of the Americans with Disabilities Act.

In 1997, the Department of Justice entered into settlement with La Petite Academy (http://www.ada.gov/lapetite.htm). The academy’s allergy response policy prior to settlement was to wait for paramedics to deliver epinephrine to the suffering child. This was determined to be unacceptable. The settlement included a new EpiPen policy requiring the academy to immediately administer medicine per the child’s medical authorization form.

The DOJ additionally addressed this in its ADA FAQ for child care providers (http://www.ada.gov/childqanda.htm). In its answer to question 19, it states that children “cannot be excluded on the sole basis that they have been identified as having severe allergies to bee stings or certain foods.” It continues by stating providers must be prepared “to take appropriate steps in the event of an allergic reaction, such as administering a medicine called ‘epinephrine.'” It is clear based on the La Petite Academy settlement that waiting for a medical professional to deliver epinephrine does not qualify as an “appropriate step.”

Severe food allergy is an ADA covered disability. Any child care provider who chooses not to administer epinephrine to a severely food allergic child in the throes of anaphylaxis not only discriminates against such child in violation of the ADA, but does so with potentially fatal consequence.

Epinephrine saves lives in seconds, but it can only do so if actually administered.

As the mother of a severely allergic child, I am heartbroken. I am heartbroken that any child care provider would choose not to administer epinephrine, and refuse to do so under the banner of law.

I am heartbroken to imagine my sixteen-month-old son struggling to breathe as his tiny, beautiful heartbeat grows erratic nearing cardiac arrest. I weep at the thought of his confusion and terror as his caregivers, those entrusted to keep him safe, fail to take fifteen seconds to administer the drug that could save his life.

I urge you not to enable this outcome by your silence. Please immediately amend Title 22 to clearly, emphatically align with the ADA, mandating child care providers to adhere to federal law.

Please protect severely allergic kids, and do so before any mother’s baby dies needlessly.

With great thanks,
Deborah

epipen

Lifesaving so easy, even a five-year-old can master it in under a minute

Advertisements
  1. August 12, 2015 at 6:46 pm

    I had no idea a law had been changed that allowed the school to do that. That is ridiculous. And it must be changed. IMMEDIATELY!

    • August 12, 2015 at 6:58 pm

      Terrible, huh? One of my teacher girlfriends sent a few messages from a child care center owner who’s her friend:

      “We now have to complete several things to allow epi’s. It’s kind of ridiculous actually. We have never had to do this before. Now it’s a decent amount of paperwork, steps, etc. … The logic is that it needs to be there and will encourage more schools to take children with these needs, but in reality, it’s just discouraging many.”

      Terrible, terrible, TERRIBLE!

  2. August 12, 2015 at 7:05 pm

    Excellent and important letter. Good for you.

    • August 12, 2015 at 7:39 pm

      I hoped to submit this online, but character restrictions would’ve only permitted me to submit maybe 1/3. I’ll print a copy and send it tomorrow.

      I sent a copy to my representative. I’ll send another print copy to the senator responsible for the (well meant, but inadvertently ill impacting) recent EpiPen related revisions.

  3. August 12, 2015 at 8:08 pm

    wow! I am speechless..

    • August 13, 2015 at 4:00 am

      Indeed. ๐Ÿ˜ฆ I’d be horrified if it were just the one school, but (i) a text message excerpted above and (ii) online searching showed many care providers don’t understand that the ADA encompasses severe food allergy … to avoid outcomes like this.

  4. August 12, 2015 at 8:10 pm

    That is a great letter. I hope all mothers send one just like it. Perhaps you need to put it in an Op/Ed too.

    • August 13, 2015 at 4:03 am

      Excellent idea, thank you! I really, really want parents to understand that well meant legislation might have some devastating impact. Their kids are protected, and they need not accept a care provider’s failure to provide epinephrine just to find a place to send them.

      (I am so, so very glad, by the way that Littler J’s current preschool took such a very, very different stance. Unaccustomed to having a severely allergic child in the days immediately following his diagnosis, I failed to bring his EpiPen to school. That school’s administrator quickly impressed on me the importance of her having it immediately: “We need it to save his life. Please, please bring it tomorrow.” That is someone looking out for kids.)

  5. August 12, 2015 at 9:59 pm

    I hate that this letter is necessary. I love that you found that it was, and met the challenge.

  6. August 13, 2015 at 3:31 am

    Absolutely Perfect.

  7. August 13, 2015 at 4:18 am

    Thank you. ♥

  8. August 13, 2015 at 5:14 am

    Deb, I have missed a few of your posts this summer and had no idea you joined this lovely food allergy mom life—I’m so sorry. I have never heard of this kind of amendment, is it local? Anyway, I hear you–it’s awful what we have to go through, sometimes stampede through to keep our kids safe and happy. My son is going into 5th now, and the school I’d like to send him to next year doesn’t even have a nurse?! It’s crazy to think this medical issue has to rule our lives the way it does, trying to figure out the logistics of keeping these kids safe when it just doesn’t seem that important to others. The anxiety, the exclusion–anyway, I just shared. You might want to share on a few food allergy forums–the mom’s there are awesome at spreading the word. If you aren’t linked up with some of them I can send you a few names.

    • August 15, 2015 at 7:34 am

      It’s so good to see you back! Thank you for reading and sharing this post.

      I only wrote about the allergy once before the flurry of posts this week: https://deborah-bryan.com/2015/05/14/even-amazons-weep/

      The first few days, I really didn’t appreciate how serious it was. I forgot J’s EpiPen a couple days running. On the third or fourth day after letting the assistant director know of his allergy, she told me plainly she needed me to bring the EpiPen immediately so they could save J’s life if he had a reaction. It’s such a dramatic contrast from D’s school, where they genuinely believe they’re reducing their liability by parents’ agreeing to that statement in the handbook. Certain rights cannot be waived, and I’d much, much rather that be widely understood before someone dies.

      (J’s school folk were horrified when I told them what was up at D’s school, and mentioned that it’s not only D’s school.)

      I’d love info on those food allergy forums, please! I have time to myself this morning, and I’d like to use it to spread the word. I want parents to understand their kids’ rights under the ADA. I want local legislators to not pass laws that child care owners run with without understanding the larger legal picture.

      • August 15, 2015 at 1:17 pm

        Don’t worry, learning how to deal with this? I kind of had a delayed reaction too–every year you see new challenges and I thank goodness for online sources who have really helped teach me what I need to do, be aware of as they get older, etc…..

        There are some great groups that are good at sharing about food allergy issues:

        FARE–food allergy research education
        FAACT-food allergy and anaphlaxis connection team
        Kids w/Food allergy
        AllergyEats
        Allergy Moms

        No nuts mom group–I know your son is egg, but join both the public and private fb group and share your post–it applies to them in a big way and they are very vocal.

        there are more but that’ll get you started!

        Definitely tap me if you have any vents, questions…I don’t know much about egg, we do peanuts, tn and soy, but we are in the same boat ๐Ÿ™‚ hugs to you!!

  9. August 13, 2015 at 5:36 am

    I had no idea care-givers could withhold life-saving medications–BY CHOICE! As a mother, the idea that I am to entrust my child with a care-giver that fails to provide care because of his/her hands have been tied up with red-tape and (assuming here) a fear of litigious action.is infuriating!

    Great letter, Deb!

    • August 15, 2015 at 7:38 am

      It really is infuriating! When I had my conversation with the owner of D’s school, he said, “I’ve been doing this for fourteen years. I know what I’m doing!” He meant to reassure me, but I was instead left with the horrifying question: If you’ve been refusing to administer EpiPens for fourteen years when the DoJ made its position on this clear EIGHTEEN years ago, what other laws have you handily ignored? If you believe you have a choice and you choose the path you believe affords you less liability, why on earth would I entrust my child’s care to you? Why would anyone? That’s why I’ll be on a mission to reach allergy parents in the days and weeks to come. I haven’t mailed my hard copy letter to Senator Lara or Governor Brown yet, but I did tweet it to them this morning in the interim. I wish I could change everything all at once, but little steps will get me there. ๐Ÿ™‚

      • August 15, 2015 at 7:49 am

        Few things bring change like a mom on a mission. Though mine does not have an allergy the needed an Epi-pen, she did need an inhaler for bad (lips turned blue, nomair at all) asthma attacks. When she attended a 1-day-a-week school (run by the public school system) we were told she could not carry drugs of any kind on her person and it would have to be left in the office and would only be administered by trained staff, even after I explained she had been using an inhaler since she was 2 & a 1/2. I turned it the medical form for their records but tucked her inhaler in ber bag every Friday. I get their position, but I sure didn’t (and don’t) understand their box!

  10. August 13, 2015 at 5:58 am

    That’s ridiculous.
    I wouldn’t be able to enforce this type of policy if I were the owner of a center and still have a clear conscience.

    • August 15, 2015 at 7:42 am

      Your statement on this means you’ve got the right kind of thinking to be caring for kids, IMO. ๐Ÿ™‚

      I actually almost pulled D after my conversation with the owner. I don’t feel confident leaving D in his care, even though D isn’t severely allergic.

      The school director, who has been amazing over the last couple of years, pleaded with me to leave Li’l D there through the end of next week. “He’s part of our family!” she said. “We’ll care for him as we always have, no matter what!”

      And that … that I can trust. After 2.5 years of witnessing her care for my kids, I have no doubt, which is why I will name by name each of the amazing teachers and administrators in my reviews … so everyone who reads knows that any positive stars fade as do the teachers from the school.

  11. August 13, 2015 at 10:10 am

    Well done!

    • August 15, 2015 at 7:56 am

      Thanks! Now I just need to drop it (and a copy for Governor Brown) in the post! For now, I’ve tweeted it, whatever that’s worth.

  12. NotAPunkRocker
    August 13, 2015 at 11:39 am

    I still have no clue how something like this could have even passed, honestly. :/

    • August 15, 2015 at 7:57 am

      Nor I. You’d think state legislators would understand and act on the total legal landscape, but … you’d think wrong, apparently. :/

  13. August 13, 2015 at 1:19 pm

    This is perfect, hats off Deborah! ๐Ÿ™‚

  1. August 15, 2015 at 8:23 am
  2. December 26, 2015 at 2:13 am
  3. June 15, 2016 at 3:07 pm
  4. June 22, 2016 at 12:50 pm
  5. August 30, 2016 at 4:52 pm
  6. October 1, 2017 at 8:24 am

Please weigh in--kindly!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: