Sunday, July 31, 2011

Paradise Lost

I never dreamed that 4 years ago, when we were fighting to keep Lily alive and healthy- that today I would be fighting to keep her in school. Part of me says keep her home, put her in the K12 internet academy program and just have fun with her because if we have learned anything in this journey:life is too short and too fraught with sickness to take it for granted. But Lily loves people and school. She cried when I told her she might have to start school later than her brother and sisters. Not because they might get to go, and she might not- but because she was supposed to see Mrs. Saba at recess and say hi to her and learn all kinds of new things in her new class. She has been practicing addition all summer because she heard they were going to be learning that in the 1st grade.

The Economy is Failing. The School systems are failing. Our overall Health as a country, failing. Yet one of the reasons we choose to stay in this great country is for the freedoms. We are guaranteed a free public education. We are guaranteed in theory, Life, Liberty and the Pursuit of Happiness. When you face cancer- you learn that life is not in fact Guaranteed. All health institutions are not created equal.  You are at Liberty to choose which institution you go to, especially if you raise your personal debt ceiling as far as creditors will allow you. Then you will owe creditors everything for the rest of your life. But you get a parent with a child whose life is threatened and you have an individual who will do anything so their child may pursue a lifetime of happiness.

The school system in Hawaii is inferior. I can not precisely tell you inferior to what. My children have attended school in this system for a collective 7 years. With 2 exceptions, they have had very good teachers. 2/7- less than 30% is not bad odds. All 3 of the kids teachers last year were not just good, they were great. Lily's teacher helped us address her quirks and gave her responsibilities in the class that suited her maturity level. Kiera's teacher took her from being below profiency in most subject areas- to being at or above all but one section!  Phillip's teacher gave them a well rounded curriculum, over and above what the standards required and gave them the skills and confidence to face a new challenge , middle school. She kept in constant contact with parents, which is truly appreciated because most 6th graders are seeking independence and report their days as "fine".  I tried to convince myself that poor administrators were not as important of an issue- what really matters is the teachers. I found out this past week how wrong I was.

This past week I got a lesson in politics and the legal aspects surrounding the education system. Everyone is afraid of liability. Laws are in place to protect all those under the department of education employ- Hawaii has Good Samaritan laws that protect anyone from litigation if they are trying to help save someone's life. Last year, school health aides became Department of Education(DOE) employees and not Department of Health(DOH or public health) . Homer Simpson lives permanently perched in the forefront of my consciousness, oh the irony.   There was a very good reason that school health rooms were under the DOH- that is where sick kids go. DOH has nurses who have licenses to train aides and oversee their facilities. In an effort to save money, the DOE took over this position, because health aids do not have licenses- they could be paid less if their delegated responsibilities were less. So in order to do that, not only did the position have to change, the INTERPRETATION of legislation had to change. We call this policy. So the DOE changed POLICY last May that does not allow health aides to make any assessments, give any medications, store any medications or perform any life saving functions- EXCEPT 3.  Health aides are allowed to give an asthmatic their inhaler and call their parents. Health aides can give a diabetic child a Glucagon shot and call 911. Health aides can give a child with an allergic reaction, the epi pen and call 911.

I talked to the DOE, I talked to DOH. DOE says public health nursing says they cannot allow health aides to do any assessment. But wait- they can assess on the 3 aforementioned conditions? DOH says that DOE makes the policy, they just recommend what is safest for the children and medically sound and their policy does not allow assessment. But you just said the aides COULD assess in 3 situtations?  DOE wants to save money. DOH wants their nurses paid and their control was just taking out of the health room. I'm pretty sure I just dealt with this situation. Yes, yes I did. Bella wanted to use Lily's DS. Lily did not want Bella to use it because she doesn't know how and she will break it. Bella swears she knows how and won't break it that Lily just won't let her use it. SO if Lily lets her use it and Bella breaks it- she's out a DS- if Bella uses it and breaks it- it's chalked up to she didn't know better so she's not responsible. So I stepped in and made sure Bella knew she was responsible for her actions and her actions alone and if she broke it, she was responsible.  Lily was under no obligation to share, but it was the right thing to do. Sometimes the right thing to do is risky. Far too many people choose feigned security- because if Lily doesn't share- she sets up a precedent of not sharing. The next time Lily wants to borrow something of Bella's guess what will happen? And it won't be about this item- it will be about the DS. So I say 1) always do the right thing. 2) Look at every situation in the relevant context.

I don't care about the politics of whose job is whose and how the DOE and DOH departments dys-function. I am very sorry that someone did the right thing and got sued. I am even more sorry that our "justice" system allows such careless litigation to proceed. Americans are known internationally for being litigiously careless and overzealous all at the same time. We are the butts of many jokes. I got fat- sue McDonald's, I am unhappy, sue my employer, I was lazy -sue for discrimination, I had an idea- sue the person who worked to realize it, she took my boyfriend- sue her for looking like me. It has to stop. People are responsible for their actions. Legislation cannot absolve anyone from that responsibilty, yet we continue to interpret it as such. Unfortunately Legislators and policymakers set the precedent in all the wrong ways. Until common sense starts prevailing, we are lost. Until the people of this great country stop accepting injustice as part of the policy and assuming it can't be changed- it will not change. I would love to spend my time pursuing personal happiness, but I am going to pursue change. The future starts with our children and the children of this country are being set up to fail by the laws and the policymakers who refuse to be held accountable. Write your Legislators. Write your Board of Education. Let the Governor know. Next time you pay a tax- think of all the people who use that money to provide a disservice to you and hold them accountable. When someone does the right thing, excels at their job and accepts responsibility- let's give them the praise and accolade they deserve. You will find there are so many out there doing the right thing and fighting too. There can be change. It can always get better if we make it so.

Thursday, July 28, 2011

Dealing with Discrimination In the Hawaii Public School System

Two days ago, a quick search on the KeoneUla school website for a copy of the school supply list turned into a veritable shitstorm. I could not find the list. What I did find was an announcement tucked away in the bottom of the page about school rezoning that will take place. As of next year, Lily and Bella would not be allowed to continue at the school they are at, despite a grandfather clause issued 2 years ago allowing them to start and complete through 6th grade there. When the initial anger subsided, I realized despite the fact the school has new facilities- they are not taking advantage of them. The administration is noncommunicative, narrowminded and at times rude. It is not a school that I wish to continue to fight for. I volunteered over 20 hours last year, often with Bella at my side assembling binder folders. Not helping kids read, do math, science or social studies, or teachers with menial tasks to save them time- but squirreled away in a room gluing and taping folders together to put in binders- despite the 8 administrative assistants that "greet" you in the office. And by greet I mean look at you when you walk in. I was done. I was ready to pull my kids. I went into the office and was greeted and asked admin assistant #1 if she knew anything about the rezoning. She did not. Of course not- the employees of the school have no worries about their kids or neighbors kids who they carpool in with being excluded. I spoke with the Vice principal who did not have details but said they were not really giving geographic exemptions out to stay in the school. So I have to figure out how to get 4 kids to 3 different schools within a 10 minute period next year- nice. Not gonna happen. I take 3 GE forms. Not to stay in that school, but to apply to a school we went to years ago before this school was built.

I call the Principal at the new school- leave a message and send an email. I let her know Lily needed medication and our situation and inquired about availability. Within hours she had called me back and sent an email- there were exactly 3 positions open in the grades I needed.  I sighed relief.  But it was only the calm before the storm. I got a call from our Public health nurse that afternoon regarding the new policy for Lily's medications at school. They wanted to schedule a meeting for 9am the next day- could I make it on short notice? It looks like I don't have a choice if I would like to get Lily in school for Monday and once again Phil can't be there because he is TDY.

Last May- the very last week of school I receive a letter that explains the change in Department of Education Policy for storage and administration of medications at school. I went into the office to see how I could proactively get this settled before the new school year. I was told to talk with my child's counselor- I did and I left a message- but technically no one could do anything until they went back to work at the end of July. So I was on hold.

The new policy only allows for epi pens, glucagon and inhalers to be administered at school. Yes diabetes, allergies, and asthma are the most common medical conditions in the public school population, but they are far from the only medical needs. Health Aides are now DOE employees, not Department of Health employees. They take a course, they can administer the 3 meds listed, they cannot assess any child's condition(which is utterly ridiculous- because in order to give any of the 3 listed meds- a precise assessment and evaluation needs to be performed). Only Licensed nurses can give meds, but the policy doesn't allow other meds to be kept at school. Each Complex(similar to mainland school districts) has 1 school with a school nurse. Therefore the DOE is saying that any child who may need medication other than the 3 listed, IF they approve the medication- which now can ONLY be done by procuring a 504 plan- that child with special medical needs can ONLY go to the ONE school in the complex that has a nurse. So on the very day I learn that my kids will only be allowed to go to the school they are at this year, I learn that Lily may only be allowed to go to one school in the district and believe me not all schools are created equal. I start formulating my remarks for Lily's 504 needs evaluation the next morning- knowing full well that the school adminstrator who neither respects me or my children has the power to fight for us and she will not. My only hope is that the principal of the new school was was welcoming and accomodating and willing to work with us on Lily's special needs, will.

My stomach is in knots. We fought and continue to fight to keep her alive. The life expectancy for a kiddo with her tumor is 25 months to 5 years. I ignore that. I plan life like she is a normal kid and has a normal life expectancy, otherwise you go crazy. She is on medication she will be on for the rest of her life, that is her normal and we treat it as such. In the case of an emergency, she needs extra medication or she will die. I am trying to give all my children the best oppotunities I can with the resources at my disposal. Making people aware of her condition is for her safety, I do not want her treated differerent on a daily basis. I give her Hydrocortisone daily at home. She does not require daily meds to be given at school. She is bright, meets all but one proficiency level and that one is the ability to show numbers in a variety of ways. I laugh because for Lily- it's her way or the highway, so that totally makes sense. But IF she gets a fever, starts vomiting, has diarrhea or a traumatic injury- her body will not produce the extra hydrocortisone it needs to sustain life function. That medication has to be given in that situation. Reference last May's hospitalization due to the flu.

My neighbor coerces her husband to prevent our collective 6 children from harming themselves or their worldly possessions and she comes along to the meeting as Lily's emergency contact and my transcriptionist. We join the meeting- the principal, counselor, student services coordinator and public health nurse I have worked with before. There are 3 other representatives from the district there as well. We begin discussion about Lily's condition and her needs. They are simple in my eyes, she needs medication at school for the case of emergency. She needs someone to give her the medication in the case of an emergency. And that is where the simplicity ends. It is repeatedly reiterated by the principal that the new policy will not allow anyone to administer this medication. Um yeah- that's why we are in this meeting to evaluate if a 504 plan can help and if Lily is eligible for it. Fortunately I wasn't the only one in the room who was under that impression as the District ladies suggest doing the formal eligibility paperwork before we discuss anything further.  Since Lily had cancer and her current medical need for emergency medication is life threatening, she qualifies for a 504 plan. I knew this because after she was denied eligibility last year, I did my research and found out that they should not have denied her. I was much better prepared this go around- chalk another one up to experience being a great teacher. I did not appeal that decision last year because the plan was worked out and the school agreed to keep her meds and the health aide agreed to administer them.

Now comes the tricky part- deciding which accomodations we are asking for under the 504 plan. We can ask for whatever, but the final decision lies in the hands of the DOE and they can refuse it or accomodate in a way they see fit. To me it is clear cut- I want her meds kept at school and I want to be reasonably assured that someone would give them to her if the emergency occurred. I know that under the current policy the health aide cannot be required to. But the good samaritan law protects any volunteer who would rise to the occasion and save my child's life in the unplannable event that there is an emergency. I would hope that at a minimum someone would be able to call 911 and let them know Lily's condition and even though they cannot dispense her medication- at least have it on hand to know what she needs. I have 3 doctors letters explaining the condition and the necessity of the medication in different ways so that everyone could understand it. I show them the emergency kit I have prepared, with the shot, the pills and the index card with step by step pictures how to administer it provided by the NIH. I show them the Emergency care plan that I prepared for all Lily's teachers, the health aide and staff last year- it has her picture, her condition, all of our emergency contact numbers and a 6 box table that states: if you see this(fever, diarrhea, vomiting, etc) Lily needs this(pills, injection, 911). And I plead with them. All I want to know is that some concerned staff member would take resonable steps in an emergency to help my child live. I have worked too hard to keep her alive for her to get sick or die when it can be avoided. Accidents happen, kids pass out and sometime preexisting conditions are found after it's too late. Everyone always says- if we had only known. Well in Lily's case we know and it can be avoided. I find it hard to believe that in a school with 80 some employees- not one person would be willing to volunteer to save her, that they would stand idly by with hands bound by policy or administration and watch a child die when life saving medication is at their disposal. If that is truly the case- this is not an institution any child is safe in. The principal points out that an accomodation should be made to allow Lily to make up school work due to absences. The DOE employees are incredulous-that isn't the policy at your school already? I get a wink from panel member. Right on, I am not crazy in thinking that was a stupid policy. But then again, I'm beginning to think I have yet to find a policy I like.

The meeting takes the ugly turn. Debate over how the policy is written ensues. I point out it does not state that no one can volunteer to give meds. The principal says she would not allow anyone to volunteer. You would not allow someone to volunteer to save a child's life when you know what they need and have it on hand? I would not allow it, she says. Let- me -be- clear- on -this. If the DOE ALLOWS her medication to be kept at school and she is laying passed out at your feet and someone volunteers to give her life saving medication- you would NOT allow them? I would not allow them, she said. In the collective silence of  the room you could hear both my heart break and the angry lava start to spill out as my neighbor shook her head and mouthed- it's over.  Nope- It is just beginning.

The principal has the audacity to continue about how at her school it is always safety first and that since they cannot meet Lily's safety needs, perhaps we need to have her go to Ewa Beach where they have a nurse. I hope to God no child ever passes out or is severely injured at her school because she would not allow them to be helped. Unless of course she would just not help Lily because of her condition, but that wouldn't be possible because that would be discrimination and that is not allowed. There are policies against that.  And if she truly would only act in that way because of policy then the policy itself is discriminatory by nature and also wrong. The panel would like to discuss what we do about Lily. She cannot start school at Keoneula Monday because a plan is not in place and the next 2 "work" days are furloughs. Someone points out that I should discuss it with the principal in private. I agree, that would be a better opportunity to have her sign the GE because even IF they met Lily's needs- I would not allow my children to stay at that school under her watch. That is no longer an option.

I step into her office, tell her I called Iroquois Point and they have spots available and could she please sign the GEs for my children. She bumbles around not knowing where to sign saying oh, IP is a good school, they are IB too. She tells me that she is sorry. I already knew that.

Lily Kay Monkey

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