[Social-sciences-list] Handwritten pages, accessibility, and confidentiality

[Kaiti Shelton]

Hi all,

I previously posted about this issue on the human services list but
have not gotten any suggestions for how to handle this challenge that
suit my needs.  I got similar answers from a group of blind music
therapists, but as both groups tend to be comprised of older folks I'm
hoping I might get some more satisfactory answers here from people who
know more about technology or why I might not want a reader other than
just being a stubborn whippersnapper.

I am a music therapy student and for my practicum this semester I am
working one-on-one with a young man who has Down Syndrome.  We have
developed a great therapeutic relationship over the past few weeks,
and the theoretical models I've used have worked wonderfully.
Reciprocity is one of the core values of the format, which is great
because it allows for him and I to help each other, and for him to
take some of the responsibility and gain self-affirmation and success
from that.  (Music-centered, client-centered, and resource-oriented
music therapy are the principles I'm using in case anyone is
interested).

In one of our sessions this week the client brought in a spiral
notebook with some handwritten song lyrics that he had composed
himself.  It was clear that he was seeking musical support and wanted
me to work with him to shape the songs into musical works.  My role in
this case would be to help him by forming the melodic material and the
chord progressions for the harmonic structure, but that was extremely
difficult for me to do without access to his lyrics.  I think he did
feel like he got something out of it because he did a bit of
directing, but it would be nice to really shape the song into
something unique (he identified that he wanted a pop sound and chose
to sing it along to the harmonic structure of "Fight Song," with my
supervisor and I playing in addition to the recording of Fight Song to
back him up).

In the following session the client agreed to let my supervisor make
coppies of the notebook pages, and she took pictures of them using a
scanner app on her phone and sent them to me as image PDFs.  OCR won't
work on these since they're handwritten, so I'm still somewhat stuck
in accessibility.  The real catch comes in how to make them accessible
since I am not quite sure what the terms of the informed consent are
(the degree coordinators handle that as this is still fairly early in
my practicum sequence) and I also don't know what I can do on my end
to be ethical.  I don't know if going through disability services or
robo braille is an option because I can't guarantee that the files are
destroyed once I get my coppies of them.  My professor suggested that
we wave the usual requirements of not sharing more than superficial
information between clinical teams and have a classmate read the
lyrics to me so I can write them down, since I need to get them
somehow.  However, I think this is something I need to figure out how
to handle on my own because I may very well have this situation crop
up in the professional world and may not be able to run to classmates
or colleagues busy with their own work to do that.  Additionally, call
me stubborn, but I'm the type of person that avoids readers at all
costs because I want to be independent and not bother other people
with my workload, especially peers.

That aside, when I emailed this to the human services list I received
one response in which the clinician lectured me on how I should have
the client read his lyrics to me so I can write them down in an
accessible format, and I can use it as a way to educate him on how I
adapt, how self-disclosure can be beneficial for the therapeutic
relationship, etc.  I am well aware of these facts and have strived to
self-disclose my blindness in ways that are beneficial to my client.
We talked about it in the first session I had with him and he receives
reminders of why he needs to tell me what he's pointing to or say what
he wants as needed.  He has even read lyrics of songs I've printed out
for us to work on for me a few times so I can find where he is looking
on the page and guide him to the right spot.  He has heard voiceover
and understands what it does for my phone on a basic level, as well as
seen my cane and notetaker before.  I think considering his level of
cognitive functioning that he understands it as well as he can and
with reminders that I've been giving him will understand it possibly a
little more as we continue working together.  On another note, I'm not
willing to sacrifice valuable session time which could be used to
address our goals for him to read to me.  This is because although
give and take is very important in our relationship, I think that
would be overdoing it.  It takes him longer to process and read things
out loud, and sometimes I have to clarify what he says because his
speech isn't always clear.  I think we'd at least sacrifice the
majority of a session if not more with just getting the information
into my computer and checking that it is correct, and that is not
something I'm willing to do-to sacrifice a client's treatment for my
own accommodations.  That's a principle I think I would stick to in
the professional world, so I'm really looking for something that will
allow me to independently and effectively get accessible versions of
his song lyrics while maintaining professional and ethical standards
of practice regarding confidentiality.

Any suggestions or methods any of you have used for navigating these
issues would be appreciated.  With fall break my next session isn't
until Wednesday, but I'd like to have time to look over the lyrics to
see how I can best be of support.
-- 
Kaiti Shelton
University of Dayton-Music Therapy
President, Ohio Association of Blind Students 2013-Present
Secretary, The National Federation of the Blind Performing Arts
Division 2015-2016

"You can live the life you want; blindness is not what holds you back!"