IEP/Bus question

So we have just run into an issue with the county telling us that Ella cannot ride the bus because there is no one trained to render aide if she has a seizure.

Has anyone dealt with this? She is on the bus for literally 18 minutes in the afternoon only and has about 2 seizures a year.

Any suggestions/advice or anecdotes would be more than welcome.

Report post

11 replies. Join the discussion

It is you and your child's legal right to have an aide provided on the bus who is trained in seizure first aid. I'll try to dig up the article for you from the TS Alliance newsletter about parents who had to fight with the school system to get an aide on the bus for their child. But, the good news is, the law is on your side. I was able to quickly find this: http://www.tsalliance.org/documents/The%20Rehabilitation%20Act%20of%201973% 20Section%20504.pdf This article explains an aide on the bus is a right under a 504 plan, which your daughter should qualify for based on her TSC. Best of luck to you!!

Report post

My son has tsc and has always ridden the bus to and from school. Never an issue. They have to provide transport for any and every child no matter what school district or where you live! Get in touch with your local state advocate group (free service) and get them involved and I guarantee they will wake up.

Report post

I almost pulled Kelly from summer school because of the bus. They were going to transport her 40 mins each way without medically trained staff and out by us ambulance services are volunteer so not always reliable response. I was not going to allow her on the bus without medically trained personal, finally the school ended up paying me to drive her to school. They can't refuse to transport her, they can take her off the bus, but have to provide an alternative. Good luck- you can contact Dena Hook also at the alliance. I'm sure she would have some options for you.

Report post

Can you tell me how much they reimburse you? They are offering no alternatives and there are no service providers here that will transport a 3 year old. My husband and I both work and my mother in law who watches her in the afternoon cannot transport her because she can't pick her up to get her in and out of the car...I am at my wit's end.

Report post

Standard IRS reimbursement - something around .50 a mile. Call Dena at the alliance I bet she could have some suggestions.

Report post

Thanks so much. I did call Dena and she was a fount of information. Now just trying to get the IEP meeting scheduled...

Report post

If you request an IEP meeting, they must hold one as soon as you ask for it. Do not let them put you off. It is your right under IDEA and FERPA to have transportation as a related service provided in the IEP.

Report post

Under federal law IDEA your child has a right to receive and Free and Appropriate Public Education (aka FAPE) (learn and USE these acronyms) Your daugter's needs must be looked at on an individual basis and provide for her unique needs...meaning, just because they have no one trained for seizures or have never provided this service before, does not mean they get off the hook. Ignorance is not an excuse. The IEP is created to address your child's unique needs.

Your request for an IEP meeting (in NYS state it's called a CSE meeting however other states call it differently) needs to be put into writing (to create a papertrail and have proof of request), don't rely on just calling your chairperson. Hand deliver and ask the person receiving it to make a copy and initial and date it for your records (you can tell them that this is your proof of receipt). There is no legal timeframe mandated but a typical meeting should be held within a "reasonable timeframe"we say 10 calendars days (I work at an advocacy center where I advise parents on educational rights) but in your case you should ask for an emergency meeting to be held ASAP. The decision is by law required to be a concensus decision (not majority but everyone in agreement) and you as a parent of part of this decision. The district should not delay this by using a common stall tactic of "no one here can make that decision"...by law the district is required to have a such a person at the table...if not, let them know this and ask they find such person at that moment so as not to delay the decision further. If they continue to refuse you should request "Due Process" at the end of this meeting and ask for the paperwork to be provided to you before you leave that day. Mediation and Impartial Hearings are the next step in this process.

If they do agree to put a person on the bus, what is the role of this person? They should make a "Plan of Care" for your daughter's seizures and the aid AND bus driver should both be aware of this plan and have access to it easily. They should have a plan in the event that either of these people are absent, there should be regular subs who are aware of this plan. This plan should be written with the district nurse, you and with your input as you are the expert in your daughter's seizures and seizure presentations, aura's, etc. and possibly needing to be signed off by your ped or neurologist. Also, it is not likely that a non-medical staff person could legally even provide diastat or versed (in NYS it's not recommended) so if they are not providing a trained medical professional on the bus (i.e. lpn) they will need to address how they are to advance in protocal should she not come out of the seizure (expressly written on the care plan i.e. seizure lasting longer then 3 min, 5 min, 10 min, etc)...do they call you, 911, etc. Does the bus have a radio, does the driver have a cell phone-is there reception in the area in which your daughter travels (some of the parents I work with have their child in mountainous type ranges and for several minutes there are dead zones).

There should also be a plan of care written for the school setting too since they are so concerned about the bus ride. If they are not providing a 1:1 nurse for her in the school setting and relying on the school nurse to address seizures, what is the protocal to follow and what if the school nurse is absent?

As you've even said, it seems her seizures are well controlled, but the first time she has a serious one at school or on the bus they ARE going to freak out, so a plan of care is something I always recommend and if you can personally go over it with the school personnel and put their mind at ease I am sure this will help.

It is important for EVERY parent with a child in special education to partake in advocacy trainings in your area so that you learn about special education laws and know how to proactively and effectively advocate for your child. Each state has a Parent Training and Information Center-if you google this and search for your state you will be able to locate one (it may not be near you but they may have trainings and agencies they work with who can support you either with technical support via phone or thru local workshops). Cuts to funding are causing real challenges for districts, some find loopholes on how not to have provide services and supports, others really have a desire to provide, others rely on a parents ignorance, and still others simply don't know how. Knowing your child's rights and learning the skills you need to work effectively and creatively with your district is CRUCIAL for your child's academic success.

Report post

Thank you so much. What you said is basically the process i have been operating under. Dena gave me some very similar advice and I looked up all the statutes to be armed.

Our IEP last week was what I can only describe as ridiculous. There were 12 people there most of whom I didn't know, which is fine, whomever can make it happen...but they ended up mostly bickering amongst themselves.

I informed them that I had hired someone to transport her and they said that they would reimburse me but gave me no means to file the paperwork etc. They joked about mileage-we only live 2 miles away from the school but I actually drive back from work and then back to work so a 30 mile round trip to pick her up. And the "resolution" was "we will figure something out."

My preference would be to continue utilizing the individual I hired- an off duty LPN for $35/day but I was informed that wasn't possible. Their plan is to hire an aide (FL only requires medical professionals for traches and g-tubes) have the district nurse train the aide and then have the bus do the route, then drop those kids off then pick Ella up and drop her off late, doing the opposite in the afternoon- the reasoning is that Diastat cannot be administered with other children on the bus, but my issues here are: 1. her day is shortened by almost an hour and 2. how can that mess be more cost effective than what I have proposed?

Report post

I have a couple of questions for you. If the county nurse trains a individual, what happens if that person can't be there, she becomes sick or something? Doesn't the school have a special ed class with other aides? I always had a back up plan just in case something happens. Also the number of people at the meeting was to intimidate you. Don't back down you have rights and so does your child. Remember you have to fight their battles and the schools try to give as little as they can get away with. All of my ISP's were three hours if not longer because they did the same as yours fighting among themselves. But I usually got what I thought my son need for his quality of life...which was as much as I could without hurting the other students(money-wise). Does her Diastat have to be given on the bus? Could she take before or after the bus? Otherwise the school is doing alot of running and what happens if there's a new bus driver who doesn't know he/she has to go pick up Ella after the other children are dropped off? Sorry just questions on my mind. Good luck!!

Report post

All good points. Diastat is Ella's rescue meds only used if she has a seizure longer than 3 mins in order to prevent the sort of status seizures we have seen in the past. She has had about 2 of these per year so they are fairly rare, but still dangerous and an emergency plan is obviously necessary. They mentioned having a back up bus driver as well as 2 back up aides trained but I still think the easiest thing is to go with the contractor I have.

In regards to other aides, FL attempts to integrate as much as possible, which we are happy with but it makes it harder to deal with situations like this. If she was to go to a center school, she would have more medically trained staff available but she would not have the benefit of learning from age appropriate peers.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support TS Alliance

Help the Tuberous Sclerosis Alliance reach its goals and support people like yourself by making a donation today.

Donate to the Tuberous Sclerosis Alliance

Discussion topics

TS Alliance links and resources

A personal message from Julianne Moore

Community leaders