Re: Vents in school/IEP
Derek Juntunen (djunt(AT)mtu.edu)
Wed, 20 Aug 1997 20:32:41 -0400 (EDT)
> Well, VERY GOOD!!! Congrats!
>
> Federal law requires that your daughter must be barrier free everywhere. My
> experience is the the education (secondary) is very aware, and by now, has had
> great experience, and gotten rid of their fear.
>
> My daughter was in the third grade when she was is a MVA, that left her as a
> complete C1 quad, vent dependent. At the time she was in a Lutheran school
> that of course was bot subject to the law, and they would not do anything to
> allow her to return. (Very christian, eh.) She then of course was in the
> public system. At first some had mentioned the ISD (Intermediate School
> District), a system of course designed for those of special needs. (mental,
> etc.) This was not the place for her, she was a A-B student, with no head
> injury. Then there was POHI, (physical & other health impaired) this also was
> not the place, most of these kids are birth defects, and this place is mostly
> for social skills of being away from home, parents, etc... So, it was on to
> the standard public classroom where she belongs.
>
> The local school district is very rich, (atomic power plant) and also it
> already had a bad experience by trying to prevent kids with special needs into
> the classroom. So, at that time (1991) we had some of the major roadblocks
> cleared.
>
> She does have an IEP, that is handled with the ISD and the host school, but it
> was never an issue since Jill didn't require the school for anything other than
> just a little understanding that somethings need to be lightened up. (i.e.
> instead of doing a 1000 addition problems, a smaller amount would do the trick
> so long as the teacher understands that she knows what she is doing.)
>
> But, of course the big thing is nursing. We have the best no-fault auto
> insurance in the world in Michigan, that provides for all medical care.
> Period. Jill of course requires 24hr attention, but the problems we had was
> standard with nursing agencies sending people who didn't even know what the
> vent was, if they showed up at all.
>
> When Jill first left the hospital, & went right into school we of course
> understood that a very special group of people would have to be their for her.
> These people would have to be RT, PT, OT, skilled nurse, maintenceperson for
> vent, chair, etc., & more. There were a few professionals that could not
> understand that, and had no problem with a nurse never seen before would meet
> her at the bus, and they would be off to school by themselves. (I know I
> wouldn't want to be the nurse, as well as Jill, in that situation. But, we
> know that's what they do.)
>
> So, we started our own nursing company. This way, we had control of who & when
> someone was going to be with her, & this requires them to be a little more
> dependable, and of course they can be trained they way they need to be, use to
> the regular schedule, etc.
>
> Now, the daily stuff. The school has transportation that is of no problem.
> She either uses a different entrence, or comes a few minutes sooner or later
> than the hurd of buses. She requires time & space for some personal care &
> thats about it. There are a host of other things that consitantly come up,
> i.e. getting dressed up for picture day only to find out that the photos are
> taken on stage that's not acessable. Things take time for everyone to adapt,
> but things do change, and we all learn to think about all the different
> logistics.
>
> Now, you'll still have the problem with staff members, Jill's first teacher was
> the same fourth gade teacher I had 30 years earlier. I didn't think this was a
> wise choice since the room (or her) hadn't changed since then. I mentioned it
> to the principle who is a friend of mine & he said he thought it was still the
> best choice. (Untill after the first day.) But, we said we would ride out the
> storm since there was only six weeks left in the school year. But, this first
> teacher was SURE that Jill was going to exploid in her classroom and that all
> the other parents were going to sue her. We later found out that she had a
> letter in her file that was to obsolve her of any personal liability. ;) (She
> retired after that year, something I think was the reason Jill was there. ;)
>
> Another big problem at first will be to let the teachers find out for
> themselves that the kid is really doing their own work, and that the
> nurse/aid/parent is only there moving books, transcribing, following
> instructions, etc. First hand I found that this was something everyone had to
> be comfortable with. But, after the first year, the message gets passed around
> on what is really happening, of course there will be those instuctors in the
> years to come that will challenge the situation for themselves. Beware, and
> take care, they come around quickly and get with the program. After all who
> wants to be the snot that doesn't give the kid the breaks they deserve after
> everyone else has!!! But, there will be those who will still think that the
> nurses are doing the work. (Tougher now that Jill's in High School doing
> advanced work that's over the nurses heads. ;)
(Sorry to everyone for quoting Ed's entire message; I'm using an old UNIX
e-mail program that makes deleting stuff very time-consuming.)
I was using the Internet before the Internet exploded, but I am still
continually amazed by it. As you might remember, Ed, I was at Mott
Hospital in Ann Arbor the same time Jill was. I believe I chatted with
you a few years ago on your BBS (now there's an acronym I haven't used in
awhile!). It is great to hear from you and even better to hear that Jill
has been able to make the transition to school. (Please e-mail me at
djunt(AT)mtu.edu because I am interested in speaking to you again!)
My story is similar in many ways to Jill's. I was injured in a hunting
accident (gunshot at the C1/C2 level) a month before I was to start fifth
grade. I'm now 17 and about to start my senior year. The local school was
extremely supportive from day one. They pay for my nursing care during
the hours I am there, my physical therapy, my transportation, and whatever
equipment I need to do my schoolwork. I go to the same school as
everybody else. I go every day and I am rarely late showing up or early
leaving. Last year I missed 18 days I think.... and about 8 the year
before. So not too bad. I do my work on computer with a HeadMaster... I
take hard classes, and get good grades. So my transition has been really
successful. Next year I'll be going to Michigan Tech University studying
Computer Science.
I couple of others things:
1). If you are injured with an expensive injury like mine, and don't have
good no-fault auto insurance, it is a nightmare. I have private insurance
through BC/BS and they have caused a tremendous amount of grief to our
family. I joke that they should have dragged me out to the road after I was
shot and said that a car hit me! I guess I have a sick sense of humor.
2). It's hard to maintain stability in nursing coverage when you live in a
rural area like where I live.
If anyone has questions, feel free to ask.
Derek