The ALS Association Program Series – The Hrbek-Sing Communication & Assistive Device Program


Kristin: The technology has changed tremendously,
especially over the last several years with the emergence of voice-activated
smart home technology. So, it’s very important to make sure that we can offer
those living with ALS the best access. Valerie: One of the main components that our
program provides is the ability to hang on to pieces of their independence and
sense of control of their environment, of how they communicate with people, for a
much longer period of time. Andre: Probably two years ago, so second visit
maybe, she mentioned that, you know, are we do we use any of these things in our home. Kristin: Our Communication and Assistive Device Program really offers access to a lot of
communication and assistive technology devices to make sure that they’re able
to maintain their independence and they’re able to maintain control over
their home environment to the best of their ability. Valerie: This is an exciting time
for technology. Things are becoming much more intuitive and we’re finding that
the products that we can provide in our loan program can serve people from the
beginning of the disease through as it progresses all the way to the end. Kristin: Our
program really offers a range of devices. Basic things like communication sheets,
mid-level would be tablets or iPads and high level would be dedicated speech
generating devices that are often donated to our chapter. Andre: It just seems
they were all just kind of tracking. Eileen: Measuring, tracking. She would come in and help. Andre: Kristin, she was like, “what do we need? What can we work on?” you know. And, so, I think it was that positive attitude in that otherwise kind
of negative world. Valerie: We’re providing those products that allow them to maintain
independence and it lessens the burden for their caregiver. So, a person with ALS
is comfortable and safe and still enjoying quality of life. Andre: I feel like we’re sort of
scratching the surface, but it’s been good for me because I can come in and you
know we have the lights hooked up, we you use it to turn the TV on and off. Kristin: Smart home technology really works in an assistive capacity to help potentially
restore independence. It is important that therapists, so either occupational
therapists or speech therapists, are completing formal assessments to
determine which devices are most appropriate for the individual living
with ALS. Rebecca: It starts with a screening visit where a
person would come here to the clinic at the U of M campus and we would discuss
the process and then go through into one of our sound booths where we would
record a list of screening sentences. Pete: They had just traversed. Rebecca: And then we begin the recording of the
person’s own voice and in about a week or two the voice is theirs to put
on any device that it’ll work for. Valerie: I really love the voice banking program
and I’m so glad it’s available for people and I would hope that anyone who
gets the chance to do that would do it. It’s something where, no matter who you
are, the sound of a loved one’s voice is one of the most precious things and for
someone to be able to hear you speak in the tone of your voice, in the way that
you joke, in the way that you say their name affectionately, or just you know if
it shows your personality and your attitude and it’s kind of part of the
core of who you are and so to be able to preserve that for someone to still speak
in their voice it’s just incredibly precious. Andre: I’m not fighting ALS, that’s a
fight I’ll never win. But, I’m living with ALS. And what the Association does is really
enhance my ability to live with ALS by providing equipment, instruction, and
guidance to live the best life I can with what I have. And technology and equipment, it’s there to help you live so to deny, to hold off taking those
services, is just denying yourself an opportunity to live the best life you can.




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