[tri-med] Re: back to school

>So as of tomorrow at 7:30 a.m. I will be back to normal...
>as normal as normal gets around here :)  Any one else ready
>for school to begin???

{{{Tracy & Everyone else who's had triers home for 2-3 months,
including me}}},

For those of you who's child is still of school age, the old
IEP should remain in force until the new one can be written
this year.  Philina's always did!  Even when we changed
school districts, the old district IEP came with her, and was
the basis for creating the new one.

Well, I guess it's time to update on where Miss P is at as far
as getting into an adult day program....

So far I've identified the program I want her in.  It's through
the local United Cerebral Palsy, and is VERY similar to the one
she just left at the school district. Not so much work, work, work
oriented, as social interactions.  A place to go, people to see,
things to do.  As I've often said, "This child was NOT put on this
earth to work.  It's just not her thing!  She's a social butterfly,
and her greatest strength is personal interaction."

It's more in classroom time, then it is out in the community, with
only one day/week spent out and about.  They will continue to work
on self help skills and street/stranger safety with her.  But they
do also have other groups too:  work training/volunteering groups,
actual work groups that have set jobs they do around town with a
leader, even a behavior modification group, so I feel that this
organization offers the best latitude for ultimately finding her
a niche in life.  If they think she can handle the training/
volunteering group, once they've REALLY gotten to know her that is,
then I'd be open to trying it out.  Though I really see a trip to
the behavior mod group as the far more likely scenario.

Regional Center will be paying for this day program's fees, and
reimburse me to transport her to/from it.  It's not as close to
home as the Easter Seal's one was I was looking at, but this isn't
really that big of a town, so it should only take me half an hour to
get her there at worst.  Especially since her class hours don't
correspond to rush hours.  Her program will be 10AM - 3PM. And that
sure works for me.  Neither one of us are really morning people, so
those 5:45AM alarms for the last 20+yrs have really been the pits.

Now as to the requirements to get her in there, and when she should
be starting this wonderful program:

They have no openings currently, but plan to be adding another group
in November.  And that's okay with me too, because I've still got a
long list of things that have to be finished up first before she could
start.  And every time I think I'm making progress on them, something
else pops up to add to the list.  She's had her required physical
complete with TB screening, and forms filled out.  And I've completed
most of the other paperwork for the application, but there's still a
couple of places that need prep work done first before they can be
filled in.  Like they want her conservator's signature.  Okay, well
I'd already been working on the list of changes needed in the family
trust, and conservatorship for Miss P was one of them.  So our first
meeting with the lawyer on making the changes will be this week.

And I still haven't received the report I requested from the neuro
appointment back on July 1st.  (Now why doesn't this surprise me???)
Neuro was still pushing the Strattera, and it might actually be a
viable consideration now that she's going into the adult program.
Still, I wanted to run it past her cardiologist first since it's
contraindicated in the literature with certain heart problems, and
blood vessel disorders.  But her old cardio had said he didn't need
to see her for another year after her last ECHO 5/04, and then moved
away during that year without notifying his patients, so we temporarily
at least fell through a crack.  No post card reminder from his office
to call for an appointment....

I'd written the doctor who is suppose to be the leading authority on
6p's regarding it, but got both my e-mails back as undeliverable
(work & personal account - no such users).  And when I realized we
had no cardio doctor, I selected the very best option available to us,
and made an appointment with him.  And in the mean time we signed up
for the cardio clinic at conference.  Clinic doctor said that Strattera
shouldn't even be considered until after she'd had a "GOOD" EKG done.
And that opinion was reinforced when we finally had our appointment
with her new Cardiologist earlier this month, but he didn't want to
put her under for just the EKG & ECHO he wants.  But I told him I'd
see if her ENT had a wish list he'd like to do at the same time, and
Pransky confirmed he did (when we ran into him in the hospital cafeteria
right after the cardio appointment).  So we will be talking more about
that at her already scheduled ENT appointment in September, which
will hopefully give me enough time to iron out the problems that just
surfaced with Philina's PPO coverage.

So far I've seen 2 different excuses for denying the claims submitted
since June 8th.  For the neuro it was pending proof of student status,
and for the cardio pending proof of no other insurance.  But they
haven't sent me the forms for either of these requests.  Further that's
not really the issues involved here any way.  Since she's not a student
anymore, but is still just as developmentally delayed and dependent on
us for her care and well being, she qualifies for life as a dependent
regardless of age, or school status, by the provisions of the policy.

So the form I really do want, and have called regarding it several times,
is the verification of on-going disability one.  But no one has ever
returned the call from my messages left.  However the last time I did
speak to some one there who though he had no clout in the waiver
department, told me the woman in charge of that area had written in our
records that she had mailed out the form on 8/11 per my message request
for it.  Hmmmm, haven't gotten that form yet though. Imagine that....

So, when and if I can get the conservatorship, and the insurance coverage
waiver, plus the day surgery so we can discuss the Strattera question, and
hopefully try it out at home first, if at all, THEN maybe I'll be ready for
them to have an opening for her?

See it just never ends....

Fawna, mom to Philina 22yrs (PT6p & Moya Moya)
Research coordinator for  the  TRIS Project
http://home.mindspring.com/~fawna33/








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