Hello Dave,
Thank you so much for your reply. How frustrating that no one recognized
you were trying to communicate with Morse code.Actually one of the
movies that affected me most deeply was Johnnie Got his Gun (the 1971
version).A story of a WWI soldier who awakens to gradually, over time,
come to the realization that he has no arms, no legs, no face.The movie
depicts the soldier’s trying to come to terms with this and his
desperate attempts to establish communication with others.Finally, a
nurse recognized he was trying to send Morse code through his head
movements and ran to find someone who code decode what he was saying.The
movie was especially poignant to me because my grandfather died of ALS
after spending the last 15 of his life, only able to communicate yes or no.
Thus enamored with Morse code, I became a ham radio operator and learned
code myself. When I learned of the nephew of a coworker who had been
unable to communicate other than thumbs up or down for 10 years, I asked
if I could met with him. It turns out that, besides his mobility
impairments, my new friend also has poor sensation and proprioception.
My husband built all kinds of adaptive switches (big ones and really
sensitive ones, some which tried to channel his thumb to the switch,
etc. - but no joy. Finally my husband lined a mitten with the copper
tape used to discourage snails from rummaging in your garden and made an
electrodes out of that. This my friend could manage, but now with this
optimum switch I could tell he had too many tiny involuntary hand
motions (as he did eye motions) for Morse code to be feasible for him.
Then on one of the web forums I encountered a lady who worked in AAC and
she suggested using a pillow switch with his bicep since larger muscles
are less susceptible to those involuntary movements.. We had more
success with that but still it proved to be too frustrating for him. We
have high hopes that the rehab center will come up with a better answer.
Our challenge now is just to get there. &;-)
Anyway, I thank you so much for your input and congratulate you on
having your trach removed!
I wish you the best.
Trish
On 10/2/2012 7:46 AM, Dave Krehbiel wrote:
Apparently my message never made it to the quad list. Is that because I had
included an attachment? Anyway, here is my post without the attachment. If
anybody wants a PDF file containing Morse code (as described below) please
e-mail me directly.
Thanks, and take care,
Dave Krehbiel
-----Original Message-----
From: Dave Krehbiel [mailto:[email protected]]
Sent: Tuesday, October 02, 2012 9:35 AM
To: 'Trish Conway'
Cc: '<[email protected]>'
Subject: RE: [QUAD-L] Getting Medicare/Medi-Cal Benefits
Thank you for looking out for your friend. I am sorry, I can't offer any
good advice about your transportation situation. But maybe I can offer some
advice about communications.
I am personally a C4/C5 quad, and initially in the hospital I was similarly
unable to communicate. As a child, I was a Boy Scout, and knew a little bit
of Morse code. I tried to blink a message to family members standing nearby,
but none of them knew Morse code. And I did matter member all of Morse code
myself. I kept hoping that somebody would get a simple cheat sheet so that I
could read the codes and blink and they would understand it, letter by
letter.
Unfortunately, nobody got the message. Today, I've had my trach removed, and
I'm happy that I'm able to communicate more normally.
You might consider printing out a one-page piece of paper containing Morse
code. This might help your friend communicate. For example, if he is having
trouble breathing, he could blink SOS (three short dots, read longer dashes,
three short dots).
I have attached a file containing Morse code in PDF format. Good luck.
Dave Krehbiel
-----Original Message-----
From: Trish Conway [mailto:[email protected]]
Sent: Tuesday, October 02, 2012 1:55 AM
To: [email protected]
Subject: [QUAD-L] Getting Medicare/Medi-Cal Benefits
My friend, a resident of a subacute facility, is a spastic quad with a
trach. He cannot speak. He has no means to signal if he is undergoing
respiratory distress. Finally, he has gotten appointments for occupational
and speech therapy at a rehab center which is in the top 20 nationally. So
we have hope. The problem is his facility is 45 miles away from the rehab
center and his facility’s social services director is saying neither
Medi-Cal nor Medicare will pay for transportation. We could take public
transportation for the disabled but. . .
--- He could require suctioning enroute. While his mother could administer
shallow suctioning (with a Yankauer), the set up of the public disabled
transport isn’t conducive to this since 1) the wheelchair is positioned next
to the driver where she would have no access to her son. And 2) we may be
accompanied by other riders.
--- He has no good anterior head support if he must be seated vertically, in
his wheelchair
--- The trip one-way can take 2 ½ hours instead of the 1 hour it would take
by a non-emergency ambulance. Since he has a G-tube, that 5 hour round trip
and 2 hours of appointments means he has no food or water or meds at least 7
hours.
Are any of you familiar with Medi-Cal or Medicare regulations?
--- Medicare - As I understand it, all Medicare non-emergency medical
transportation (NEMT) requires that there be a medical necessity. Isn’t it a
medical necessity that my friend be able to signal he needs help if his
trach becomes plugged?
--- Medi-Cal I think has the same requirement. They will pay for NEMT if
there is a medical necessity so I would apply my Medicare argument here too.
But also I read that there was a legal case (Valdivia v. Coye) which
required Medi-Cal to expand eligibility to include therapy services when
they’re deemed necessary for a nursing facility resident to attain or
maintain the highest practicable physical, mental or psychosocial
functioning. For my friend, OT & ST could do so much to help him toward this
goal. Since he has basically been treated as a custodial case so far, does
the fact that the rehab center recognizes his potential mean that Medi Cal
should provide him means to get to those appointments?
Do you know of any precedent for such a case or maybe you have an example of
a successful Medi-Cal Task Authorization Request that I could show his
facility’s Social Services Director. Do you have know of a medical transport
company in the Metro Los Angeles area that might take on such a case pro
bono or at a significant discount?
Thank you for your help.
Trish
P.S. If not, perhaps you know of a forum where folks might have answers for
us? Thanks!
