[nagdu] confidentiality

[Tamara Smith-Kinney]

Oh, cool that you're doing that.  I have a friend with a special needs kid
who has to fight with the schools constantly because they will not do what
they're supposed to do, no matter how many pieces of paper they have signed
saying the will do what the law requires them to do in the first place.  So
the kid suffers from it, in addition to not getting much out of the
education some years.  I would go insane in the mom's place, honestly.  When
the kid moved up into middle school, the school system *lost* the records,
and it took a whole year to even come close to getting it sorted out.  This
year the situation still isn't good, but...  

Since the closing of the School for the Blind (separate from the Commission
for the Blind), parents of blind children are moving out of Oregon because
it's just hopeless.  Appalling, really, but true.

My friend with the kid in middle school has also had a heck of a time
getting worthwhile advocacy, although she does seem to have some good people
this year who have made a difference for her in terms of moral support and
in making some progress with the school.  Over the past few years, she's had
some of the same advocacy nightmares I have.  Sure, we'll be happy to help
you get you sorted out...  You just need to stop being so awful to those
innocent people who aren't doing what they're paid to do and required by law
to do because they only want to help you!  It can get a little brutal.  It's
her fault, and the kid is awful...  Er.  That's why the kid needs special
consideration and accommodation and is getting more awful through not having
that.  The mom is not the perfect parent, but under the circumstance (which
I spent a couple of years sharing with her being her next door neighbor and
good friend -- and the kid glommed onto Mitzi pup like curls on a poodle),
she does a pretty darn good job.

So I don't get the When Advocates Attack way of doing things around here,
which I have gotten.  Like my friend, I can advocate for myself, I have the
skills and stubborness and all.  When that isn't working, though, it would
be nice to have a third party with clout step in and go to those meetings
with you and maybe even provide some push in the right direction.

If said advocate wants to give me advice or even feels the need to kick my
butt in some direction, that's fine.  So long as it has to do something I am
really doing wrong or could do better, and I'm not just once again
struggling to figure out how to respond to the mounting piles of crap from
the agency,  which gets into sheer weirdness and keeps right on going to the
outer limits pretty quickly.  So I keep records and have all conversations
via e-mail unless I just can't avoid it, then I have tape.  Doesn't help
with keeping things reality based.  If the agency says it's so, then it's
so.

Wonder if that's somehow a culture thing, or a people thing?  I tend to
agree that your approach is the reasonable one, and it was what I first
expected when I realized my own self-advocacy wasn't working and went
looking for outside assistance.  Um...  Weird.  The CAP attorney's approach
to her role was startling at first, but I decided to go ahead and test the
system about a year ago and discovered that my original observations were
far too accurate.  Very weird.  Then again, the state is paying her to
advocate for me against the state, so her advocating for the state instead
does make a certain amouint of sense.  As long as they're all getting paid,
I guess they're fine with it.  Sigh.  Others have been more frustrating, but
the phenomenon does seem to be consistent enough across enough systems that
I guess it's what is.  Disgusting, since I'm one of the people paying them
whether I want to or not, but I have yet to find anyone who has found a way
through the morass...  At least I have learned that I don't need to waste
more time wondering if it really is just me somehow.

Okay, getting into a rant.  I can say that with the person seeking advocacy
against Fidelco, I can understand *exactly* why she -- and others -- did not
choose to come on the list to tell their story publicly and let us know
their names.  If someone chooses that and wants to take the heat, then I
applaud.  But if someone were to ask me if they should, I would almost
certainly advise against it flat out, then tell them it's there choice, and
here's something of what they can expect.

That was in no way a statement about this group or even individuals within
this group.  It's more of a general statement about human nature and social
and group dynamics.  I would say the same thing if I'd never heard of y'all.
/smile/  Actually, I don't think the person would get truly brutalized by
this specific group, but there's always a risk that you're going to get some
harsh treatment in any similar situation.  Sigh.

Tami Smith-Kinney

-----Original Message-----
From: nagdu-bounces at nfbnet.org [mailto:nagdu-bounces at nfbnet.org] On Behalf
Of Julie J
Sent: Sunday, February 06, 2011 10:11 AM
To: NAGDU Mailing List,the National Association of Guide Dog Users
Subject: Re: [nagdu] confidentiality

It's interesting to think about.  I'm also an advocate for a Mom who has a 
blind Kiddo in public school.  We haven't ever even entertained the idea of 
signing agreements or the like.  I've never asked to see records or 
documentation of any sort.  Perhaps the type of advocacy makes a difference 
in what sort of precautions need to be made?  Don't know, just thinking out 
loud.  Mostly I'm there if she needs to vent and to attend meetings at her 
request.  I find that I don't even need to say much at meetings, just my 
presence makes all the difference.

I don't assist with legal issues other than to help with identifying 
resources and to bounce around ideas.  I also don't directly work with any 
of the places where there have been issues, I just help the Mom develop 
skills to advocate for her Kiddo.  I think I might feel differently about 
information sharing in this case if I did directly talk to the school or 
businesses.

Maybe it all comes down to trust.  I know how I'd feel if someone I trusted 
with my personal information shared that with  people I didn't want knowing.

But then again everyone has a slightly different take on what is private.

Julie 


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