Re: Hurricane Bertha

On Sat, 19 Jul 2008 12:03:02 -0700, Joerg
<notthisjoergsch@xxxxxxxxxxxxxxxxxxxxx> wrote:

Jonathan Kirwan wrote:

<snip>

So, Joerg? Your church is an important resource. Thanks, and please
let them know it makes a real difference to real people.

Look for churches that have a parish nurse program. We are just starting
one but it's very taxing. The first intro schooling phase alone is
$850/person. Now we have to iron out the liability insurance side and
who know what that's going to cost.

Yes, insurance is hard to tailor to specific situations. Particularly,
ones that have 'red flags' in them.

If we could reduce the number of lawyers by 95% or so life would be a
lot more normal and help would be easier.

This touches on something that annoys me. We have DD people who are
in dire shape! I mean, quite literally, dying. Two new reports were
produced this year and last -- one in Oregon, one for Minnesota, if I
recall. Both of them identified the fact that DD populations are
dying 25 years earlier than the population at large -- and this is
_after_ removing the known effects for their disabilities. The
reports, both of them, say right up front that this is about the
controllable care circumstances they are receiving and not about
medical conditions.

Our medical services will often just pull all the teeth in their
mouth, that is when they ever get around to putting them into a
hospital to do it. But DD people without their molars choking on food
kills a large number, by itself, and is well-documented as a risk
factor. But rather than paying care givers enough that they will stay
at their jobs longer than a few months so they might be better able to
learn to work WITH the DD person for their care, it instead just slips
through the cracks of the system and because of the general difficulty
getting any service at all, DD clients will often have terrible,
untreated dental problems which culminate in a radical solution of
just removing all of them at a young age.

The point here is that beggars can't be choosers. Our DD populations
cannot afford the privileges of risk avoidance that the rest of
society appears to want and to be willing to pay for. General
anesthesia is pretty safe, today. But by nearly completely avoiding
any risk at all of general anesthesia, except in very expensive
hosptal settings where intubation is handier and there are extreme
measures equipment and trained personnel available for example,
regular care which is really more generally important is also
sacrificed. Because regular care is sacrificed, the health of teeth
is, also. Eventually, they are removed (not infrequently well before
30 years.) Then they have a much more serious problem of choking,
unattended. And winding up dead.

Better would be simply that they get some regular care and, yes, there
will be some risks with that. But acceptable and providing,
generally, a better and longer life in exchange. The greater good,
overall.

Risk avoidance plays a role in reducing the lifespan of DD folks. I'd
rather just accept some risk and have a much more enjoyable life.

The topper here in CA was a
huge volunteer cleaning group where IIRC some union took issue,
demanding that the state only use people who get paid xx Dollars. Blew
my mind since they knew full well that there was zero Dollars in the
kitty. Pure greed, complete disregard for volunteerism.

Reminds me of another true story I experienced. We contacted Oregon
Health Sciences University (a teaching hospital here in Portland,
probably like Stanford down there) administration about the use of
their MRI unit. We had a radiologist who worked at OHSU, was trained
on their own MRI unit, was willing to do volunteer work in researching
autism, etc. We also had several other department heads at the
children's section (CDRC) who had some proposed research plans they
wanted to pursue and they were willing to volunteer their time, as
well. We had lined up parents and children with severe cases of
autism willing to come in. Everything was ready. It wouldn't cost
anyone anything (the MRI requires, as you know, superconducting
magnets... and they are kept cold 24/7 even when not in use because it
is costlier to shut them down to warm up... or so the folks who
operated that particular MRI unit told us at the time.) You know what
the administrator told us?? "Get it funded." No way was he going to
allow us to have access to their equipment, even if they had to keep
it operational and their costs wouldn't increase, even if we had lined
up trained personnel to do all the work as volunteers, even iff...

Well, it just seemed to me like they wanted to keep a money stream
going from the public and they didn't care. That if we weren't going
to help them haul in buckets of cash, they weren't going to allow us
to do anything.

Jon
.

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