Tuesday, August 16, 2011

The Sammich Approach

My husband often employs the sandwich approach in parenting. Positive reinforcement, criticism/instruction/discipline, positive encouragement.  On days he is really on his game- the kids don't even know they are being schooled and I often marvel at his technique. Heck sometimes I'm even caught between criticism and postive before I realize what happened. He's gooood. It's one of the many things about him I love and appreciate. Sometimes, when I have time, I try to emulate the finer aspects of his teachings- but time has been in short supply.

The kids are back in school- we are in week 3. I have heard from 2- TWO of the many folks I emailed regarding the Storage and Administration of Medications Policy and it's obvious faults. The email went a little something like this.....

My name is Jennifer Mallory. I have 4 children and have had them in the Hawaii public school system for 6 years.  Last May, a new policy was instituted that affects one of my children significantly based on her medical needs. This policy changes the way the school health aide is allowed to store and administer medication. There are only 3 medications allowed under this policy- Glucagon, Epi pen and Inhalers. There is no space, policy or provision for children who have special medical needs that cannot be treated with these three medications. In 2010-2011 SY, I was able to fill out a form 36 that would allow approval for her medication to be stored an administered at school. This new policy affords no alternative. I requested a 504 plan evaluation to ask for accommodation for her medicine and we had that meeting July 27, 2011.

In 2008, my daughter Lily had 2 types of cancer, adrenocortical carcinoma and a rare sarcoma. She has been through multiple surgeries and chemotherapy. Today she is a healthy, bright 6 year old.  A side effect of the chemotherapy is a condition called adrenal insufficiency, her adrenal glands no longer function. Adrenal glands produce steroid hormones that regulate bodily processes such as blood pressure and stress response. We replace this function with daily medication called Hydrocortisone. I give her this medication daily, outside of school hours. In the case of sickness or trauma, the body releases extra hydrocortisone to help the body maintain life functions. Lily’s body cannot do this, so in the case that she develops a fever, diarrhea, vomiting or is severely injured, extra Hydrocortisone needs to be given.

Adrenal insufficiency is extremely rare. Hydrocortisone was not even on the school formulary last year. That does not mean it is any less important to the safety and survival of my child in an emergency situation. Unlike Glucagon or the Epi pen-you cannot overdose on Hydrocortisone. The injectable form, called Solu-cortef is very similar to Glucagon. Without this medication, in the case of an emergency, Lily could die. She does not fall under the special education protections that I am aware of, as she meets proficiency on almost all of her benchmarks. This policy causes undue stress and work for  families, educators, administrators and the Public Health nursing system.

The solution presently is the recommendation that Lily has to go to the only school in the complex with a nurse who under this policy is licensed to give medication other than the 3 medications of the policy. This policy is discriminatory. The health aides at any public school are allowed to give 2 types of injections in emergency situations, both which could have detrimental side effects- but not allowed to administer another life saving injection?  Her condition requires no more assessment than that of the conditions under the policy. My daughter would then be required by DOE policy to go to an alternate school based on her medical condition, which is in practice discrimination and in  opposition to the Americans with Disabilities Act. The policy is seriously flawed. At a minimum it needs to have a stipulation for medicines other than the epi pen, Glucagon and Inhalers. There are not only 3 conditions that require life saving medications. If a health aide is qualified to give either of those injections, she is overqualified to give a Hydrocortisone injection as it requires no assessment or evaluation.

Please review this Policy. It is not sound practice and does not adequately address the issues implementing it produces. There needs to be a way to get medications approved for storage at schools for all emergency life saving medications. I have contacted EMS and with  a medic alert bracelet and a letter from a physician- they can approve administration of these rare medications they do not have on hand.  There are reasonable solutions to this problem that are neither taxing nor difficult to implement at low or no cost that facilitate the best care of Hawaii’s children.  This policy is a disservice to families who have already faced way too much hardship and carry the burden of caring for  a child with special needs. It is a disservice to the hardworking educators and administrators in the schools who have to try and keep their children safe while the policymakers tie their hands behind their backs. Please contact me to discuss any fine points of this policy that may not be immediately apparent to me.

Thank you for your time,

Jen Mallory

There are many issues with this letter. It goes against many of the finer letter writing suggestions. I think it has about 8 run on sentences. It is far too long, it uses words like diarrhea and vomit and ends on a note of sarcasm. So I daresay it gets skimmed, if read at all. There are a couple of things it does not mention. It doesn't mention storage space being an issue- it is not- the only issue is the policy. It doesn't mention the gender or age of Lily's siblings. It doesn't mention taking any legal action and I assure you I have not the funds to retain legal counsel on this matter. It is funny how one phone call can change the flow of the smoke in front of the mirrors.  Here are the 2 responses I have gotten.

Dear Ms. Mallory:
I was sorry to learn of your daughter’s medical condition, however, it sounds like Lily is a thriving cancer survivor. Your daughter’s need for medication and accommodation at school is a complicated issue impacted by DOE policy and staffing.  It is my understanding that your family has been represented by legal counsel, Eric Seitz.  I have been further informed that a solution was found which meets with your approval. I believe the Leeward Complex Superintendent found a storage space at your child's school so that Lily can remain with her three older siblings.  

I will be meeting with Superintendent Kathryn Matayoshi to discuss a range of school health issues before the end of the month. I will share with her your concerns.  Thank you for bringing the issue of medication storage and administration to our attention.

Again, I am pleased to learn that Lily and your other daughters are doing well. 

I immediately recognized the sammich approach and respect the skills- but unsatisfactory.

and this one is my favorite..from someone I was told by 3 different and unrelated sources is the person who made the policy in question.

Dear Ms. Mallory,

My apologies as have been out of office and tardy in responding. I hear your concerns but I am not involved in the policy and its implementation. Please continue to work with your school team and the Public Health Nurse to address your daughter's needs.

Thank you and take care.

I would like to, but the policy doesn't seem to allow for the implementation of that.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)