I was talking to a school nurse that I know. We got on the topic of FA.
She was telling me she's had kids arrive at the school in the morning having reactions ... probably from something they ate for breakfast or from contact ingestion as there is a "no eating" rule on the bus. She tried to address the school bus safety gap with the district, but they decided not to act.
A confession - I may be a decent advocate for dd most of the time, but she rides the bus without an epi or trained driver. It is the ONLY time that she is without an epi close by. I educate her ... where she goes, the epi goes ... except the *#%$ bus. I didn't start this thread to talk about my personal situation ... I know I could fight for it, I know how, I also feel that given dd's medical history that she is probably not at a huge risk of ana on the bus, & the school is close with an EMS station on the way.
My reason for starting this thread is to ask, in general, is it going to take a tragedy before school districts address this safety gap? Why do so many individual parents have to fight so hard regarding this one issue? Is it so hard ... the medical guidelines are clear ... FA kids in the school's care should have epi and trained adult with them at all times.
So many times it takes a tragedy & lawsuits before policies are changed. Can't the FA community & schools skip this step with buses and just change the policies already?
Oh, and another thing, my older dd has informed me that her bus driver breaks our school's "no eating on the bus" policy by sometimes giving the kids on the bus food treats!!!
I know that one of those kids has celiac.
Can you just say ... Huge Liability Issue!!!
Get these drivers trained!
I have to agree that one of the top issues right now for LTFA kids in schools is the school bus situation: both t/from school and for activity bus and fieldtrips.
It's a huge concern.
It shouldn't take a tragedy to get this changed.
It's going to take a LTFA village . . . working in concert . . . and doing it politely, but firmly.
My husband and I fought this fight armed with a letter from our allergist stating it was medically necessary that our son (who has had contact ingestion reactions) take a van to school ( at the time he was 5, self carrying and would have to switch buses at another elementary school).
Our argument was the van was smaller, easier to monitor, and would be door to door. We also knew the driver of the regular bus in our neighborhood and brought up his cognitive ability to administer meds, let alone recognize the need ( no argument from school personnel there. Probably should have pushed that angle further).
We were denied the van. The superintendent stated that the school is not bound to follow the recommendation of our physician and that wiping down the hand rail and his seat would be sufficient. ( like this would EVER happen. Not to mention it would isolate him ).
The most frustrating part to me was that my husband teaches in the district and knows for a fact that one of his students is taken by van, by himself, everyday from the middle school to the high school for high level math. Ummm. I don't believe his safety and well being depend on this...
A friend was so upset by this decision he offered to hire legal counsel on our behalf. My husband ( the one who would suffer the consequences at work) was gung-ho. I felt for the small bit of safety we'd be gaining, it wouldn't be worth the emotional and mental toll. And the burning of bridges.
We were able to finagle our schedules to get him to/from school ourselves. We also had them state in our 504 that we and our physician felt the schools recommended accommodations were inadequate.
So, here are some of the problems with the whole school bus situation in this country so far as LTFA (in NO particular order and NOT aimed at anyone in particular):
1. No epi-trained adult -- either the bus driver OR a separate adult aide on bus.
2. Bus driver might be epi-trained but is NOT trained in basic assessment to even know if/when . . . the training is all over the map.
3. A "false sense of security" (yes, good use of THAT phrase here) by the school district in their thinking that they can just rely on the "pull over, call EMS" response.
4. Districts that don't allow the student to even self-carry the epinephrine such that it is even on the bus.
5. Assumption that because the child ate AT HOME that morning, then there cannot possibly BE a reaction on the bus. "False sense of security" again.
6. Refusal to acknowledge the potential for contact reaction on bus that goes to ingestion and ana reaction.
7. "No food" rule on the bus that is Unenforced. NObody is accountable and people ARE eating.
8. Bus drivers foolishly giving out food "treats" on bus . . . and even parents giving out "food treats" at the bus stop before kids get on bus. Hello?!
Will come back to expand on some, but anyone is free to add more and to expand on anything.
Yup. Houston, we have a problem.
MandCmama, we were posting at same time.
Pretty amazing as to what was stated so far as you & physician's belief as to 504 accommodations . . .
Many schools seem to ONLY want to accommodate if it is FREE or virtually NO cost to them . . . and also not exactly accountable.
More things to consider:
Some school districts have bus drivers who are actual district employees.
However, many districts now have outsourced that to companies that just provide bus drivers.
Some rides are really long, but all city and near med care.
Some rides are really long and very rural, with med care far away -- both time and distance.
Any bus ride can get stuck in a traffic situation such that EMS cannot reach them.
Some drivers (regardless of who employs) are totally capable of being epi trained and anaphylaxis-recognition trained. Some drivers are not.
Substitute drivers . . . what to do & how to handle?
Obviously, there can be no one-size-fits-all answer.
But that doesn't mean there should be NO plan and NO meaningful strategy.
~ ~ ~
This blew me away -- when we lived in Fairfax County, I heard 1 LTFA mom say that she was relying on OTHER kids on the bus to give the epi if her son needed it. Her argument was that the other kids were adults / almost adults and could handle it and that she shouldn't be expecting the school to do anything for her or her son.
THAT is what many are fighting -- the other LTFA parents who have always covered for the school or excused the school from its duty of care -- either intentionally or mistakenly.
So many facets to this issue.
Another facet: in Virginia a school district is not required to provide transportation to school.
maeve,
isn't that only if under 1 mile from school?
(Some shorter distances in some school districts -- called "nontransportation zones" -- but can be reviewed for safety as need be?)
Many bus companies forbid their drivers from administering the epi. Our district used to have a company that did this and I tried to get that changed and was met with a brick wall. Our superintendent was met with the same brick wall. The bus company's lawyer advised them that they would have liability if they gave ANY medication so they have a rule against giving any at all.
Our district thankfully has a new bus company now and I think part of why may be because of this policy by the old company.
The old policy and that of many schools is that if a child has a reaction on a bus the driver is to pull over and call 911. I pointed out to the school district that this is not safe and if it were safe then no one would need to carry epi pens. People carry epi pens because sometimes the EMTs are not going to arrive in time (and not all EMTs even have epis anyway).
My son's allergist felt that it was OK for bus drivers to not give the epi "because we don't see reactions happen on busses." I know there was one boy in MA a few years back who had a serious reaction on a bus.
Quote from: ajasfolks2 on September 09, 2014, 05:52:15 PM
maeve,
isn't that only if under 1 mile from school?
(Some shorter distances in some school districts -- called "nontransportation zones" -- but can be reviewed for safety as need be?)
Nope. The is no legal obligation to provide any transportation. Now our county and Fairfax use 1 mile walk zones (actually I think Fairfax's are 1.5 miles for MS and HS kids); kids living in those walk zones are not provided transportation.
"A. School boards may provide for the transportation of pupils, but nothing herein contained shall be construed as requiring such transportation except as provided in § 22.1-221."
http://lis.virginia.gov/cgi-bin/legp604.exe?000+cod+22.1-176 (http://lis.virginia.gov/cgi-bin/legp604.exe?000+cod+22.1-176)
Section 221 of the code (referenced at the end of the quote)
http://lis.virginia.gov/cgi-bin/legp604.exe?000+cod+22.1-221 (http://lis.virginia.gov/cgi-bin/legp604.exe?000+cod+22.1-221)
Ajas, I think that it differs by state as well. Here, school districts are required to provide transport for anyone who lives farther than two miles away. The district that we live in now buses everyone though, which is nice, because there isn't really a walkable route that would be safe for anyone under maybe HS age.
Oy vey!
I called our state DOE Transportation Department about this. Guess what they said? Many districts choose to call 911 rather than administer the epi (during transportation) because they have calculated how far away the EMTs would be and determines that it would be safer for the child to receive the epi from trained medical personnel who could also monitor vital signs, etc.
What a load of crap.
When DS was in elem., we had a plan in place, but it would not work for most. Our school is 1.6 miles from home. The bus takes a direct route (although there are stops in between). But that means that the furthest the bus is from either school or home is .8 miles. The plan was in case of emergency bus either turns around and heads back to school, radioing nurse on the way so she is waiting, or if close to our home, skip all stops in between and head straight to our house. Which could have been a problem if I wasn't home, which sometimes I wasn't, but usually was. Obviously, reverse that for morning.
The bus did, one time, pull out of the parking lot, turn around, and pull right back in. DS was having a seizure (epilepsy was the other reason for this plan). Of course, this was the day I was out in the yard waiting for the bus, with the phone inside. So the bus was quite late, then DS wasn't on it. But the bus driver stopped, told me what happened, and i headed over to the school. When I got home I found several messages from the school on the answering machine.
There seem to be so many unique situations as to school bus transport here in US . . . but I'm thinking that at the VERY LEAST there should always be 2 doses of epinephrine on the bus . . . either with child (self-carry) or in child's special med pack that is given by parents to bus driver who then hands over to school staff upon arrival at school . . . and then reverse set up for going home.
My personal belief is that the child is entitled to an adult-on-bus who would administer. I cannot comprehend how anything else is defensible given the need for immediate use of epinephrine and the potential consequences for delay of epi.
But then who would admin if child cannot and bus drive cannot / will not? If the EMT does not carry own epinephrine, would they be willing / allowed to use the child's prescribed epinephrine? And what's to be done if EMT cannot get there?
If the bus-to-dispatch communication does not work, how does the driver contact 911? Is there always a back up resource for contacting emergency personnel?
That was another thing we requested after the van was denied...a bus aid. That prompted the most condescending email I've ever had the pleasure of reading, from the sped director. He stated that there are many allergic children who ride the bus without an aid, every day and do just fine. Would I like to talk to one of those parents?
So I composed an email back to him that needed to be edited before I hit send so that my husband would be allowed to keep his job. I boiled it down to "we'll follow our physician's advice, not the advice of a random parent who clearly has a looser comfort zone than myself".
It all boiled down to precedent. They never did for anyone else. They certainly weren't willing to open that door for our child. I think being a teachers child actually hurt us. Politics be damned!
What I do when I don't feel schools or etc understand my safety concerns is that I explain a possible scenario and the possible risks of that scenario. A person who has ana should get the epi pen at the least with in 20-30 min of the start of a reaction. Some say 10 minutes. A child on a bus may go unnoticed by the bus driver until after that point. The child could have even started the reaction before getting on the bus. Once the child is in bad enough shape that other kids on the bus bring the situation to the attention of the driver there could be very little time left for the child to receive the epi. Pulling over and calling 911 or continuing 5, 10, 15 min to home or school to get someone to get the epi (which will take time as well) will take much longer than having the driver administer the epi on the spot. By then it could be too late.
There are kids who get stings from insects just before or while on a bus as well. It is good that we are not seeing FA fatalities on buses. That doesn't mean that riding a bus with no epi is a good idea or safe. I would say it means odds are that it is unlikely a person is going to have fatal ana on a bus but I would also say that if a person is having a serious reaction on a bus (which certainly could happen--kids eat just before getting on buses all the time) then they are in a dangerous position if there is no epi trained adult who is allowed to give the epi. Many bus companies forbid their drivers from giving it.
I would have told that special ed director something along those lines. Easy to be flip about something that doesn't affect a person directly.
We did lake swimmer. As did the letter from our allergist. It was clear they were going with precedent and catering to the loosest comfort zone.
Quote from: ajasfolks2 on September 10, 2014, 12:49:23 PM
There seem to be so many unique situations as to school bus transport here in US . . . but I'm thinking that at the VERY LEAST there should always be 2 doses of epinephrine on the bus . . . either with child (self-carry) or in child's special med pack that is given by parents to bus driver who then hands over to school staff upon arrival at school . . . and then reverse set up for going home.
My personal belief is that the child is entitled to an adult-on-bus who would administer. I cannot comprehend how anything else is defensible given the need for immediate use of epinephrine and the potential consequences for delay of epi.
But then who would admin if child cannot and bus drive cannot / will not? If the EMT does not carry own epinephrine, would they be willing / allowed to use the child's prescribed epinephrine? And what's to be done if EMT cannot get there?
If the bus-to-dispatch communication does not work, how does the driver contact 911? Is there always a back up resource for contacting emergency personnel?
Based on my experience with the bus drivers in our county, I would recommend that the medication be on the child. I got a call a year later about a card with contact info, allergy info, and DD's picture on it being found in a bus (this was clearly while being prepped for the upcoming school year) that I had provided to DD's bus driver the year before (at the misbegotten suggestion of the transportation department staff). DD has also had substitute bus drivers.
I'm glad I didn't send DD on the bus when she was in elementary school.
Another consideration not discussed, over-crowded buses. DD's bus had 3 kids to a seat when she was in 6 and 7 grade. This is contrary to what is stated on the transportation department's site, which says that at MS/HS level, it is only 2 to a seat.
My son is turning ten next month and in fourth grade. He had a monitor for the ride home the last two years (I drove him to school- they couldn't find a monitor for the am) and is riding without one now. He carries two Epi Pens and knows how to self administer- in theory, at least. His bus driver can't legally be asked to administer, but said she would absolutely do so if he needed it. It's a 1.6 mile bus ride from the school to our door and the route goes past the police/fire/EMS complex. He also has two friends on the bus who have a parent or sibling with LTFA so there is some awareness, at least. The bus is also not full at all- the kids sit one to a seat. I went back and forth on a monitor this year, but my son really didn't want that any more. I still go back and forth a little, but things have gone fairly well so far. There was one incident of eating on the bus. My son told me, I emailed the 504 Coordinator telling her and asking that he not be singled out when it was addressed. The principal dealt with it very well and there haven't been issues since.
Tweeted by @AllergicLiving & @think_inclusive
"ALL Students Should Be Safe at School"
http://ollibean.com/2014/09/13/all-students-should-be-safe-at-school/ (http://ollibean.com/2014/09/13/all-students-should-be-safe-at-school/)
QuoteIn just 10 months in 2012, Isabella Herrera, Jenny Caballero, and Jessie Shillingford, three minority students with disabilities died under the district's care.
QuoteI'm very concerned about the reports from the transportation department last Spring and what occurred last Friday when 9 year old Tamya Johnson was left sleeping on her school bus.
QuoteWith any organization, the attitudes and the culture is established from the top down.
in general, is it going to take a tragedy before school districts address this safety gap?
Um-- as per my note in the other thread-- I realize this sounds incredibly bitter and cynical-- but--
even that will simply not be enough.
:disappointed:
People are INCREDIBLY good at distancing themselves from tragedy with rationalizations. This is why things like drunk driving, smoking, alcohol abuse, and yes, school security and health services are all battles that have been hard-hard-hard to win.
It takes WANTING to learn to do better, and opening one's heart and mind to the possibility that yeah, it really CAN happen to you. I'm convinced that most people lack the ability to see that, or to contemplate disaster before it strikes them.
Tweeted by @NoNutTraveler
"Western Springs parent wants food allergy training for bus drivers"
http://www.chicagotribune.com/suburbs/western-springs/news/ct-dws-food-allergies-tl-0716-20150709-story.html#page=1 (http://www.chicagotribune.com/suburbs/western-springs/news/ct-dws-food-allergies-tl-0716-20150709-story.html#page=1)
QuoteWest would like bus drivers to be able to identify anaphylaxis and use epinephrine autoinjectors — commonly called EpiPens — if necessary. Dr. Sakina Bajowala, Audra's allergist, said the EpiPen ideally should be administered at the first sign of an anaphylactic reaction.
QuoteThe national bus company does not train its drivers to use epinephrine autoinjectors
Wow. A national company.
What's interesting about this case is that the allergist is also a mom of a child with FAs AND is social media savvy--specifically Twitter.
I wonder if she is willing to shake some trees.
Quote from: joanna5 on September 11, 2014, 12:22:17 PM
My son is turning ten next month and in fourth grade. He had a monitor for the ride home the last two years (I drove him to school- they couldn't find a monitor for the am) and is riding without one now. He carries two Epi Pens and knows how to self administer- in theory, at least. His bus driver can't legally be asked to administer, but said she would absolutely do so if he needed it. It's a 1.6 mile bus ride from the school to our door and the route goes past the police/fire/EMS complex. He also has two friends on the bus who have a parent or sibling with LTFA so there is some awareness, at least. The bus is also not full at all- the kids sit one to a seat. I went back and forth on a monitor this year, but my son really didn't want that any more. I still go back and forth a little, but things have gone fairly well so far. There was one incident of eating on the bus. My son told me, I emailed the 504 Coordinator telling her and asking that he not be singled out when it was addressed. The principal dealt with it very well and there haven't been issues since.
I should update that shortly after I wrote this, our district's head nurse (she's also the nurse for my son's school) contacted me to tell me that, thanks in large part to my advocacy, all regular and substitute bus drivers in the district are now trained on both Epi Pens and Auvi-Qs. This will be done twice a year. The policy change turned out to be a huge help when my son's driver suffered a severe health issue of her own and he had a substitute driver for several months. The nurse was thrilled when she called- she said she'd been fighting for this for years, but had made very little headway until my son came to the district. ;D
Heya. Drive by posting. Real quick this is hot from my inbox.
Georgia bus aide to administer emergency medication. Diastat--remember that US DOJ settlement agreement with camp regarding the refusal to administer Diastat, moreover without any remedy for an adult delegate to administer on bus rides. Need that one? Look in Main under camp DOJ.
Maybe I'll put in a Bluebook cite later. Too busy right now. It's no magic bullet and I have not read it in full. However, with Manalapan-Englishtown (DP decision by IHO / ALJ), this shows a consistency with the need for an adult trained aide to deliver epinephrine and Diastat expeditiously rather than pull over and dial 911 as part of FAPE.
UNITED STATES DISTRICT COURT FOR THE MIDDLE DISTRICT OF GEORGIA ATHENS DIVISION·CASE NO. 3:14-CV-72 (CDL) (M.D. Ga. Jul 01, 2015) (https://ecf.gamd.uscourts.gov/cgi-bin/show_public_doc?2014-00072-34-3-cv)
No time to copy and paste section highlights.
Camp Bravo DOJ Settlement Agreement administration of Diastat (includes mention of nurse and bus) (http://www.justice.gov/opa/file/482361/download)
J.B. & T.B. v. Manalapan-Englishtown Regional Board of Education (SEA NJ 2007) (http://www.wrightslaw.com/info/allergy.2007.manalapan.decision.pdf) required District to provide an adult trained delegate for daily transport, epinephrine specific