> Within two weeks we will have a "on loan" ventilator for Kristen to use
> while at school. A remarkably kind gentleman from the FDA helped us set up
> the arrangement, on Kristen's behalf, in one afternoon.
>
> We thought getting this ventilator would be the biggest hurdle...WRONG!
> Has anyone had the experience of getting the "authorization" for a child to
> use their ventilator in school? Does ventilatory support have to be
> written into an IEP? The school staff does not have to do anything with
> the unit as Kristen's private duty nurses are in attendance and they know
> her vents well.
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. ;)
Ed