Welcome to the Swallow Your Pride podcast. I'm
your host, Theresa Richard. I'm a board certified
specialist in swallowing and swallowing disorders, a mobile
thieves business owner, and founder of the MedSLP
Collective.
This podcast is all about delivering the latest
evidence based practice to medical SLPs everywhere.
Whether you're a new clinician seeking tangible tools
for treatment or a seasoned vet stuck in
a rut, my goal is to help ditch
the old school ways of the past that
no longer serve you or your patients, to
reinvigorate your passion for our field, to broaden
your knowledge about our scope of practice, and
to inspire you to practice at the top
of your license. So if you're listening, I
encourage you to swallow your pride, be open
and willing to learn because let's face it,
your patients deserve that kind of care. With
that, let's dive right in.
Just a quick disclaimer that all statements and
opinions expressed in this episode do not reflect
on the organizations associated with the speakers and
are their own opinions solely. Alright. Hello, everybody.
Welcome back to the Sawyer Pride podcast.
Today's guest is Samantha Ellenderi. She is the
founder and CEO of the Parkinson Voice Project.
She's devoted the past twenty six years of
her life to making quality speech therapy accessible
to individuals with Parkinson's disease and related disorders.
Under her leadership, Parkinson Voice Project
developed the evidence based Speak Out therapy program
to help the Parkinson's population
regain and retain speech and swallowing abilities.
The program can improve volume, articulation,
breath support for speech, voice quality, intonation, and
facial expression.
Patients and families also report reduced drooling and
improved swallowing. This highly effective research based treatment
combines education, individual and group speech therapy, and
daily home practice. Elland Dairy believes clinicians need
the clinical skills and compassion to provide quality
treatment while adhering to business practices that promote
cost effectiveness and efficiency. Since 02/2008, Parkinson Voice
Project has proudly provided its speech therapy services
with without billing insurance or charging for its
services.
The organization is primarily funded through donations made
by grateful patients, families, and the community. With
this unique funding model, no person diagnosed with
Parkinson's has ever been denied treatment at Parkinson
Voice Project due to insurance or financial limitations.
On that note, welcome to the show. Thank
you so much for having me. Yes. Yes.
It's such such an honor to have you
on the show, Samantha. I there's many people
that I really respect and looked up to
into this field, but, you are absolutely one
of them because I just as as I
mentioned in your bio,
I speak for most SLPs when I say
most SLPs are
either,
you know, know what speak out is, are
very interested in speak out, are are big
advocates for it, but then also as as
we mentioned, your funding model and how that
is just so unique in health care. And
so so much to dive into today. So
talk a little bit about what what led
to starting the Parkinson's voice project. I was
working at a hospital in Dallas as a
speech language pathologist.
And at that time,
my boss had put me in charge of,
we had a program
within the movement disorders clinic, a Parkinson's program.
They called it the Parkinson's Life Enhancement Program
at the time. So I was the SLP
assigned to that team. And so I was
treating lots of people with Parkinson's.
And what I noticed was that they did
very well when they went through a treatment,
but they had a hard time maintaining
the improvements that they made. And I would
say that that's what started me on it.
When I was in the hospital,
I started, you know, I created a group
where
people with Parkinson's that I'd been treated, they
would come back once a month at the
hospital,
but it wasn't something we could really bill
Medicare for. And I will say that the
hospital was not a big fan
of doing that. So after a while, I
realized it wasn't going to work, working out
of the hospital and really really providing the
level of care that this patient population needs.
So I resigned my position, and I started
looking for another way
where people with Parkinson's
could not only
regain their ability to speak, but they could
retain it too. And that took about six
years
to get started. And then so I it
was nineteen November
ninety eight when I resigned my position at
the hospital and then Parkinson Boys Project was
created officially
on 12/13/2005.
We are celebrating our
twentieth
anniversary
this year. Awesome. Congratulations.
It's it's no no small feat by any
means and such a meaningful, meaningful job for
lack of better term. I hate to say
it's just a job because I know it's,
I'm sure, a lifelong passion for you. But
yeah. Awesome. Awesome. Awesome.
Let's dive into,
Samantha. I know you put some some key
facts in in these notes here, and I'd
like to go over them and then dive
into them a little bit more. So,
the incidence of Parkinson's and speech and swallowing
disorders for any SLPs or patients that are
listening,
one out of one hundred adults over the
age of 60 is, is diagnosed with Parkinson's.
Ninety percent of people with Parkinson's struggle with
speech and swallowing. Aspiration pneumonia caused by swallowing
complications is the main cause of death in
Parkinson's,
and only three to four percent of people
with with Parkinson's are receiving speech therapy. So
if you follow it along with that, none
of that math's right.
So there's a lot of patients out there.
Yeah. There's a lot of patients out there
that need us. Oh, there's lots. I don't
even know that there's enough SOPs,
available to treat all of the people with
Parkinson's who need help. And, you know, people
with Parkinson's, they tend to recognize the physical
issues, the prod the balance issues, the problems
with falls, and, you know, not so much
the problems with speech and swallowing. And people
always ask, why is that? Well, if I'm
walking and I trip over a curb and
I fall down, I would, wow, I have
a problem.
But if I go to a restaurant and
the waitress doesn't hear my order and I
end up pointing to the menu,
that kind of passes by. You know, that,
that, that moment passes and then it's a
little bit harder.
Also people with Parkinson's,
there's a sensory deficit
related to Parkinson's where people with Parkinson's
do not hear their voice
the way that other people, when they're speaking,
it doesn't feel the same way to them
as it sounds to others.
And so if you don't think that you
have a problem, then you're not going to
enroll in speech therapy.
It was one of the big problems I
had when I first left the hospital. I
thought, well, I'll just
start a private practice. You know, at that
time, I'll start a private practice and I'll
bill for my services,
but I couldn't get anybody to enroll in
therapy because they didn't know they had a
problem. Yep. Yep. Even those spouses were complaining
and other, you know, other people were leaning
in. They really just chalked it up to,
well, I'm just getting older or that person
has a hearing problem.
It's not me. So it's really hard. It's
one of the reasons that we use the
Pay It Forward system at our clinic, a
Parkinson voice project, because people with Parkinson's don't
know they have a problem. And until they
start to get better and they start to
realize, wow. You know what? It's not my
wife. It's not my wife's hearing. It's it's
me. It's my speaking. We use a lot
of audio recording, video recordings so they can
hear themselves talk. And, until they start to
recognize that, again, they're they're not willing to
pay for treatment if they don't think they
need it. Yeah. Yeah. But once they get
better, they're very eager
to help somebody else
discover, you know, it helps somebody else go
through the treatment. And that's why I think
pay it forward works very well with the
Parkinson's population.
Awesome. Awesome.
I wanna get to more of that in
a minute, but let's, I wanna go in
order here too.
Tell a little bit about, you know, what
causes the speech and swallowing muscles to become
weak in Parkinson's.
There's a couple different reasons. Well, one, Parkinson's
is characterized by small movements,
and so we recognize that in smaller steps,
in smaller handwriting,
but also the muscles that we use for
speaking and swallowing are moving in smaller
ways. So if somebody's tongue is moving in
a smaller way, reduced range of movement,
they're having trouble when they put the food
in their mouth, trying to move their tongue,
move the food to the back of the
mouth so that they can swallow. And then
when they swallow, those movements
are smaller, also not as effective. And that's
how people with Parkinson's
can start aspirating,
not using enough force when they're swallowing,
the breathing muscles, breath support, not taking deep
enough breaths. They're trailing off at the end
of their sentences. They're not articulating well.
Yeah. So that's part of it. Part of
it is just that Parkinson's is characterized
by smaller movements. It's not that people with
Parkinson's can't produce
normal movements
but it just feels more natural to them
to use those smaller movements. So they're not
using their muscles to their full capacity.
The other part about it is that by
the time somebody with Parkinson's has any symptoms
of the disease, they've already lost 60 to
80% of their dopamine producing cells.
Dopamine is necessary for our automatic movements, for
the automatic motor system.
And so
speech, as you know, talking and swallowing are
usually automatic. We normally don't have to think
about it.
But with Parkinson's,
because there's not enough dopamine, people with Parkinson's
need to learn to use the intentional motor
system,
the pyramidal motor system,
and learn how to be more deliberate. If
they activate the intentional motor system, then they
can make their speech clearer,
louder, more articulate.
They can swallow better,
but they've got to understand the difference between
automatic movements and intentional movements. Awesome. Thank you.
Share a little bit about for people that
don't know, I have some more questions, but
if people aren't familiar exactly with what SPEAKOUT
is, can you share what that is and
then we'll get into why it's different and
more unique. Mhmm. Yeah. Well, Parkinson Voice Project
developed the SPEAKOUT therapy program in 2010
under the mentorship
of Daniel r Boone. We met doctor Boone
in 2009
as we had started
to develop a program that would not only
help people with Parkinson's regain
their speech and swallowing, but retain it too.
And then we had the fortune of meeting
Doctor. Broon and he talked about intent. In
fact, it was something that he recognized in
the late 1950s.
He was working at a hospital,
in Cleveland
and he was working with a neurologist and
he noticed that when people with Parkinson's would
would count one to 20, they could hardly
be understood. He was just mumbling, speech intelligibility
was poor. But when they had patients
count backwards,
all of a sudden they were louder, clearer,
more articulate. And so that's where intent came
from. So Speak Out Therapy program is unique
that it combines education
first. So learning the difference between automatic speech
versus intentional speech. It involves individual
speech therapy.
As patients get to weeks three or four
of their individual treatment, they start transitioning to
their speak out therapy group, and they attend
that once a week. Something else, before after
a speak out evaluation,
as we're doing the education,
Parkinson Voice Project has also developed
speak out therapy materials.
So for example, in The United States, we
will ship a speak out booklet.
It is the program
to every patient who is enrolled in speak
out therapy. So patients need the tools to
get better. And I think that is very
important. So therapists for therapy, you know, in
the bio that you read, I talk about
how we not only need to have the
clinical skills to help patients,
but we also have to adhere to the
business practices.
At Parkinson Voice Project, we don't bill Medicare,
but we developed the Speak Out Therapy program
to fit within Medicare guidelines.
So it's not a program that we thought,
well, you know, we don't have to worry
about that. So we can treat patients, you
know, see them for as long as we
want and, you know, have long treatment sessions
and everything. As we develop speak out therapy,
we developed it with the Medicare guidelines
in mind.
So we have developed the Speak Out Therapy
materials for therapists to use so that they
don't have to spend time
developing their own materials,
which they don't have time. SOPs do not
have time
to create their own materials and so that's
a big part of it. So
education,
having the right tools available,
individual therapy,
group therapy,
daily home practice, and then every six months
we bring patients back individually
for what we call speak out refresher. If
you go on our website at parkinsonvoiceproject.org
and look up the speak out therapy program,
you'll see that the program is depicted in
a circle. We call it the circle of
intent, and that outlines all the different components
of the Speak Out Therapy program, and it's
a circle because it never ends. And that's
what people with Parkinson's need to understand too.
You can't just go through a month of
speech therapy and say, okay. That's it. You're
always fighting against the progression of the disease.
So people with Parkinson's, once they enter the
Speak Out Therapy program,
they're in it for life. All right, talk
a little bit about what is the, Parkinson
Voice Project's Campaign to Reach America? This happened
during the pandemic when we started to treat
patients
using teletherapy.
Before the pandemic,
most patients, they would have to come to
our clinic to receive treatment. But during the
pandemic, we were forced to not just us.
It's not that we weren't ready to do
teletherapy,
but patients weren't ready to do teletherapy.
But during the pandemic, all of a sudden,
we could treat patients all throughout Texas. We're
licensed in Texas. So we're limited to Texas,
but we could treat patients from anywhere in
Texas
from our clinic. And,
since we weren't charging, since we weren't billing
for our services and that kind of eliminated
some big bear barriers.
One, transportation
was no longer an issue and then the
insurance or financial limitations,
you know, has never been an issue for
us. So we thought, well, what if we
could replicate this? All we need is one
clinic
in every state that would do what we're
doing, not charged for
speak out therapy
and specialize
in teletherapy,
be able to treat anyone
in their state and do it online. And
that's the campaign to reach America. It's a
$20,000,000
campaign
where we are going to establish Speak Out
Therapy and Research Centers across The US,
so that every American
has access
to Speak Out Therapy. So far we have
29
states that are covered. These clinics, these centers
are housed within university speech clinic. So that's
how we get away with the not billing
the Medicare.
You know, those clinics. So these centers are
treating patients, they are conducting research, which we
need, and
they are training their graduate students, training future
speech language pathologists. Awesome. That's a incredible, incredible
idea. So let's let's dive more into this,
the pay it forward
funding model. You know, where did it come
from? Whose idea was it? How was it
sustainable? How does it keep going? You know,
it sounds sort of almost like this pie
in the sky concept. Like, it would just
be so cool for so many SLPs or
so many patients to have this model, but
how does it actually work? Well, it says
it's not easy. Yeah. So I came up
with the idea in 02/2008,
Parkinson voice pro originally we were working out
of a physical therapy clinic. Well, first we
were at my house. So first we were
at my house,
then I ended up having 70 people showing
up every month for group. It was just
getting very difficult.
And so we moved to a physical therapy
clinic and they were going Medicare. And while
we were there, you know, we had to
turn people away. Some people couldn't afford the
20%.
We had young onset patients who weren't old
enough to be on Medicare and their insurance
wouldn't cover. And so that was, you know,
we were starting to see this is very
complicated
to be able to do this and to
build Medicare.
So we were moving into
our our own space. There was 4,000 square
feet
foot building, and we were gonna move in
there.
And what happened was Medicare had put a
freeze on giving
licenses to any new clinics and at least
in our area. I don't know if it
was nationwide
or just in our area, but we couldn't
get a Medicare license.
So, I yeah. I took my legal pad
and I had an idea
on on one side. This is 02/2008,
you know, put on one side everything we
would have to do if we were billing
Medicare.
And on the other side, what would happen
if we didn't go Medicare? And all of
a sudden when I looked at it, I
thought we wouldn't need a Medicare billing specialist.
We do not need a billing office.
We don't need to verify insurance. And at
that time you couldn't do it online. On
that time, you had to call the insurance
company, and you'd be on the phone for
twenty minutes trying to do that.
We wouldn't have to do evaluations,
fax them to the doctors, have the doctors
sign them, bring them back. And then we
were treating patients. We were doing the refreshers.
So sometimes it was three months. We would
bring a patient back in three months if
they needed it or six months and, you
know, write the you know, get the script,
you know, write the eval, send it back,
you know, keep track of all of that.
And I went to our board and I
said, I think that we'll be better off
if we don't charge anybody
for therapy, and we use pay it forward
instead. We ask so patients receive all the
therapy they need. And at the end they're
given an opportunity to pay it forward, make
a donation to help the next person go
through treatment. Now I know it sounds like,
oh, that was, you know, so easy. It
it wasn't.
The way that we well, one, we're a
nonprofit. So I have had some therapists reach
out who who have a private practice and
want to do this, but we are a
nonprofit.
So we have to do that to be
able to accept donation. And at the very
beginning,
our board president
made a $400,000
gift, the Parkinson Voice Project. And so with
that money, we were we had our rent
paid for for five years. Then I went
to other
donors, other patients I had been treating. Again,
you know, I've been doing this since 1999.
We started in 02/2005.
So when Parkinson's Voice Project started, we were
in that physical therapy clinic in 2005
and then this is 02/2008.
And so I went to donors and I
asked them to make a multi year commitment.
So some donors donated 5,000 a year for
three years,
10,000 a year for five years, dollars 2,000
a year for three years. And so what
we did, we secure some donations.
So that's what started. In order to start
paying it forward, you have to have some
money first. And then from there, you know,
you've got to kick it off. From there,
then you start treating patients.
You know, we had our rent covered, so
we knew we were okay there. And then
we started treating. And then again, patients were
so grateful,
that they started making donations
afterward. I would say, I don't know that,
I do want to bring up up something
for speech pathologists who might be thinking about
this and it's a different way of thinking
about it. You know, some, I would say
that some SOPs, they want to help people
who don't have the resources
to receive therapy. So, you know, somebody might
start,
an organization
to treat people with traumatic brain injury, let's
say, and they don't have insurance and can't
get the treatment at a hospital. But we
didn't do that. We didn't say we're only
going to treat people with Parkinson's who don't
have insurance or don't have the resources. We
opened it up to any person with Parkinson's.
So there were people with Parkinson's
who had insurance. We didn't bill it. They
could have used it. There were people with
Parkinson's
who had family foundations,
people who had the resources
to make a large donation. There were other
people, your 30 year old young onset patient
trying to raise their family who couldn't. So
they'd make a small donation, and that's
okay. But do you see the difference that
if I, if we were to say I'm
only gonna treat this organization is for people
with young onset Parkinson's who can't get treated
otherwise. Yep. That would be very different. So
you have to open it up. And so
it's open to everybody. And I think that's
one of the reasons we've we've been successful.
And I would say,
that it was hard for people with Parkinson's
to receive the speech therapy, the level of
care we were giving in a hospital
setting. So if people are able to get
that treatment, then there's no reason to start
a nonprofit. That's another way is that it
wouldn't have worked. I mean, if somebody could
have just gone to their hospital and gotten
the one on one treatment and gotten the
weekly groups, So they could have done that.
If the hospital and Medicare would pay for
that at that level,
there would have been no reason to start
a nonprofit or to do it. But but
because people couldn't get it Yep. And that's
that's where it worked. If somebody needs intensive
swallowing therapy beyond speak out therapy,
we will refer them to a hospital. Okay.
So there's no reason for the nonprofit
to take in that expense or for donors
to pay for that because there are lots
of SOPs who are trained in dysphagia
Yep. And can do that specific. So you
see, I think the nonprofit Yeah. Thank you
for clarifying that. Yeah. You have to find
the issues
where where it's lacking
and and then that's why we need the
nonprofit to take it. Otherwise we wouldn't do
it. So I think that's important
for therapists to understand. If they're trying to
provide something that is,
readily accessible somewhere else, then there is not
a reason to start a nonprofit.
Yep. Yep. Awesome. Thank you for explaining that.
I know so many you know, I've just
heard through through the years, you know, they
have this really cool funding model and people
are like, how does that actually work? Like,
how does that actually work? So Well, one
thing that's very important
is
that donations have nothing to do with treatment.
And that is one point that's very, very
important, very important for the IRS,
everything.
The it's that you evaluate a patient and
you make your recommendations
based on the evaluation. You give the patient
the treatment they need. Then they're given an
opportunity to make a donation, but that donation
has nothing to do with their treatment. If
somebody makes a million dollar gift when they're
not moving up to the top, you know,
we're not gonna treat them any differently
than the person who can't afford, you know,
who isn't able to do that. That's really
important.
I had another clinic that started something like
this, and then they started to think, oh,
well, you know, okay. So I need to
no. We don't do that. No. It's not
right. Yeah. Yeah. Thank you. Thank you, Samantha.
This has been an awesome conversation.
Share with me a little bit more about,
you know, if if there's an SLP that
isn't familiar with SpeakOut, where can they go
to learn more? Where can they go to
get,
pardon my lack of of understanding too? Is
it is is SpeakOut like a certification
or is it Yeah. Training? Yeah. So so
let's go in let's go into that. Yeah.
We can go to parkinsonvoiceproject.org.
And and I wanna say park it's parkinson
without an apostrophe at parkinsonvoiceproject.org.
And you can look up the speak out
therapy program. You can also look up the
course, the certification course for SLPs.
And what I want SLPs to know, there
are lots of benefits,
even beyond Parkinson's
for becoming certified
in speak out therapy.
It's a ten and a half hour online
course, but when an SOP is certified,
they also receive free access to our e
library.
I'm really proud of the e library. In
the e library is the Speak Out booklet
and some other booklets that we have created
that therapists can use in therapy.
Also a whole set of flashcards.
Flashcards that could be used I mean, they
could be used some of them I mean,
any adult, any adult client. It doesn't have
to be Parkinson's. So,
that was an area that was really lacking.
As I was traveling around the country, visiting
our speak out therapy and research centers, and
I'd go into these university
clinics and into their supply closet. You'd go
in and there'd be this big closet full
of,
materials for children. And some of them had
none for adults or one little one little
shelf. And so we created these materials for
speak out, but then I realized, oh my
gosh. I mean, this is this is for
speak out,
but then I realized, oh my gosh. I
mean, this is this is, like, a really
big deal
that they can use these materials because not
everybody is like Parkinson Voice Project where they're
only treating people with Parkinson's. So I think
the e library is incredible.
We do sell the flashcards
on our website so people can go look
at them if they're
you know, maybe they're not treating people with
Parkinson's. They still like to use those flashcards,
but they're specifically designed for adults. The photographs
were taken by one of our patients,
so we didn't want to use cartoons or
drawings. So they're real photograph you know, photographs
of real objects,
large print four by six cards.
But something else, when a an SOP is
certified in a SPEAKOUT
therapy,
all
of their patients
also
receive free access
to the SPEAKOUT e library. So we want
to give both the SOPs and the patients
the tools they need to be successful.
And so our donors pay for that. Our
donors pay. It's not
inexpensive
to to create the e library and the
materials and keep up, you know, with the
software and all of that.
And so it's it's a gift from our
donors to people with Parkinson's
and the SLPs that are treating them. We
also
provide free training for graduate students.
The graduate students cannot become
certified in speak out therapy. We think grad
graduate students are too busy in school
to do that, and I don't want them
to take the speak out therapy course. We
give them so every SOP that's certified
also gets a code for all their students,
and they can give it to as many
students as they want. And that's wonderful because
as students are working in their practicums, then
they get to learn about Parkinson's,
they get to learn about the program and
get to practice with, you know, with their
supervisor.
But then, you know, if they take the
course their second semester
of grad school, that's a lot, you know,
a lot by the time they start working,
they know where they wanna work. That's why
we don't certify the students.
This is too much. We want them to
take the course later and we'll give them
a discount when they graduate. But I'm real
proud of the graduate student training. We trained
over 4,000 graduate students last year. And so
that probably besides helping people with Parkinson's,
I would say training our future speech language
pathologists
is is what I'm I'm very proud of
that. Awesome. This has been such a fun,
informative conversation. Thank you so much. I I
I've learned I learned a ton today too.
I know it's speak out is such a
well respected
program and an organization. Parks and Voice Project
is such a respected organization. And so I'm
I'd love to hear the history and the
background and the meaning directly from you. Anything
appreciate you saying that. Yeah. Yeah. Anything else
you'd like to share with the people? I
just want SLPs
to know
that
yes. Let me let me start over.
When we created the Speak Out Therapy program,
it wasn't that we thought we would treat
everybody at our clinic. We designed it so
that we want every person with Parkinson's
to have access
to the to a to a program that
will help them not only regain but retain
their speech. And the way I want SOPs
to think about it is Parkinson Voice Project
is supplementing
the care, the treatment that SOPs are able
to provide in the Medicare world. So for
example, by giving the SOPs
and their patients the therapy materials,
that supplements what they're able to do. In
addition,
Parkinson Voice Project
host five days a week
speak out home practice sessions. So twenty minute
practice sessions
where people with Parkinson's from anywhere in the
world can come and do the speak out
exercises.
And we record the sessions so they can
use the recordings every day. So, again, that's
a way to supplement
the care that the SLPs are getting. It's
hard in a Medicare world, both for patients
and for SLPs,
to provide the level and the intensity of
care that people with Parkinson's need. They need
a lot of therapy and it's very difficult.
And so we're working
together and that is what I think makes
it
so special.
We know that we can't treat every person
with Parkinson's who needs the help, but we
can help the other SLPs
to know how to do it, provide them
continuing education, and then provide these added resources
and supplement the care that they're giving. Hope
that makes sense. Yes.
Resources and supplement the care that they're giving.
Hope that makes sense. Yes. 1100%.
It's a absolutely beautiful model and, yeah, thank
you so much for sharing all of that.
For those of you that wanna learn more,
we will attach all of the the links
that that Samantha shared with us in the
show notes and in the podcast description.
Where can people find you, Samantha, if they'd
like to reach out to you? Yeah. Please
visit our website at parkinsonvoiceproject.org,
and we have all our contact information there.
And I'm happy to answer any questions SOPs
have about the program.
And I appreciate the opportunity very much. Thank
you.
And that's a wrap for this episode.
As always, thank you so much for listening.
And if you'd like to download the show
notes from this episode, please visit swaddleryourpridepodcast.com.
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