Thanks, Beth!  Ironically, I found some nuggets at CDC's publications web
site.  Aparrently, there was a 1994 conference titled, get this: "Preventing
Secondary Conditions Associated with Spina Bifida or Cerebral Palsy
Symposium (February 17-19 1994, Crystal City, Va.)".  So, it would appear
that the bureaucrats have known about, and discussed, these issues for quite
some time.  Trouble is, this information never gets disseminated to the
health care industry.

I see this sort of thing all the time in the public sector:  The bureaubrat
goes to conferences to discuss issues of relevance to the "people" they
serve, yet all that comes of it is justification for their jobs--just
another certificate they can put on their office wall or a line on their
resume'.  The symposium attendees came up with the following action points:

"RECOMMENDATIONS

Revise the definitions of cerebral palsy and spina bifida to include
consideration of secondary disabilities.

Compare the characteristics of young adults with cerebral palsy or spina
bifida who received intensive early intervention with those who received the
more traditional kinds of care provided before the mid-1970s.

Alert those who have mobility concerns and their care providers (physicians,
physical therapists, and occupational therapists) to the potential dangers
inherent in activities that use abnormal movement patterns.

Develop curricula for preservice, inservice, and specialization programs and
promote their incorporation into the general curricula. To avoid the
unending battle to get one more new concept into academic and training
programs, promote the incorporation of special curricula at national
accrediting levels.

Disseminate information regarding concerns through professional journals,
conferences, and meetings.

Bring together people from traditional and nontraditional disciplines to
attack the problems. Include at least pediatricians, neurologists,
orthopedists, phys-iatrists, gerontologists, physical therapists,
occupational therapists, nutritionists, dentists, ergonomists, architects,
recreation professionals, and rehabilitation technologists. Make certain
that people who have cerebral palsy or spina bifida are well represented.

Develop and implement a program for communicating concerns and
recommendations regarding secondary disability and aging to service
providers.

Until more is definitively known, promote the use of assistive technology to
save body parts wherever possible.

Gather data-both cross-sectional and longitudinal-and analyze the facts
carefully from an interdisciplinary perspective.

Develop informational and training programs based upon the data.

Begin teaching in early childhood that people are responsible for monitoring
and promoting their own health.

Because of the dangers of inactivity, develop and promote alternate forms of
exercise and activity for people with mobility disabilities."



Have you seen any evidence of the above in mainstream healthcare?  I've not,
yet this symposium was conducted over eight years ago.  Read carefully the
following (it's the opening two para. of the conference proceedings):

"WHILE THE population in general is aging, so also are those who have
cerebral palsy or spina bifida (Machemer & Overeynder, 1993). Unfortunately,
members of these two groups are reporting with loud voices alarming
messages: they are experiencing pain, loss of function, and loss of
independence (Murphy, 1993; Overeynder, Turk, Dalton, & Janicki, 1992;
Segalman, 1993). These problems are often thought of as being characteristic
of people who are aging, but in these two groups their onset is being
reported as beginning in the mid-twenties. Dr. L. G. Pawlson (1993) points
out, "An injury such as a rotator cuff tear, which might be merely an
inconvenience for a young person, may precipitate nursing home admission in
an older woman who has preceding functional loss in dexterity and mobility
from osteoarthritis and osteoporosis." The compounding effects of trauma and
aging on disability from cerebral palsy or spina bifida can be monumental.

Careful studies of what is known about aging in general, what is known about
characteristics of cerebral palsy and spina bifida, and what happens when
the former is overlaid on the latter are long overdue. Are people who have
cerebral palsy or spina bifida receiving the best advice on how to maximize
their potential and protect their future well-being?"


The writer says we are "reporting with loud voices".  That's true, but who
is listening?  How about her closing question?
My answer would be an unequivocal "NO!".


-Kyle


-----Original Message-----
From: Elizabeth H. Thiers [mailto:[log in to unmask]]
Sent: Tuesday, July 02, 2002 7:45 AM
To: [log in to unmask]
Subject: Re: New web site idea


Ok, time for name dropping now.  The CDC (and the fed gov) finally decided
that Birth Defects and developmental disabilities deserve their very own
center.  And guess what?  They are finally looking at disabilities and
fitness for people with disabilities across the lifespan.  Of course,
nothing gets done at the CDC without people outside harping on them so, if
you go to the site the Birth defect and developmental disabilities has their
own page (you'll have to look for it can't remember it right now and you can
email them your concerns).  Also, with the new push for Social Marketing,
they are also always looking for people to test run their service products.
Just a thought to add to your development of a website.


Beth T.