~ JUNE 26, 2012 ~

CAROLYN PHILLIPS: Hello, everybody. I want to

welcome you to the Pass It On Center webinar. We are

really glad that you are with us today.

In Georgia it's a beautiful afternoon, a little bit

hot, but it's nice. I hope the weather is good where you


We really do appreciate your time. As you know --

I say it all the time -- time is the most valuable thing

we've got. And so we will be starting right on time. And

I have 2 o'clock, so we'll get started.

This conversation that we're going to be having

today, I hope it's something that will continue. If you

have questions, please feel free to get in touch with us.

And you'll hear us all say that.

Really glad that Liz Persaud and Trish Redmon are

joining me on this webinar, in particular, as we talk about

bariatric sleep machines and communication AAC devices.

And so before we get too far along, I'd like to

turn this over to Caroline Van Howe. And she can walk us

through some of the great things about Adobe Connect.

We're excited about this new platform that we're using, and

we really appreciate our collaboration with Caroline and


So, Caroline, take it away.

CAROLINE VAN HOWE: Thank you so much, Carolyn.

Welcome to everybody, once again.

This is a voice server IP computer access webinar

platform. And as I mentioned earlier, the Adobe Connect

webinar platform is accessible for screen readers, which is

one of the reasons why ATIA uses it for its own webinars

and also makes it available to the Pass It On Center team

for their webinars.

If you'd like to ask a question, there's two ways

to do so. You can type in a question or comment in the

chat area. And that's available to everybody to see and is

also captured by the recording.

You can also ask a question, if you'd like, using

your microphone on your computer. To enable your

microphone, you click on the microphone icon, which is the

green icon on the upper tool bar of the screen to the right

of the speaker icon.

As we are recording this webinar, we would ask

that, when you're not using the microphone, please do click

the mute button so we don't get any background sound.

As Carolyn mentioned, this webinar will be

recorded, and the archive will be available.

A couple of other points about the webinar room.

It does enable access to look at other websites, also play

videos and also share any documents. So it's a very

full-functioned webinar platform. And ATIA has been using

it now for the last six months, and we've had no technical

hiccups, I'm pleased to say.

I'd like to hand it back to Carolyn, and take it

away for this exciting webinar presentation.

CAROLYN PHILLIPS: Excellent. Thank you so much,


Liz and I were just talking about how much we love

your voice. I know we tell you that all the time, but we

do wish that we had that very sophisticated trainer voice

that you have. But here we are. And as I said, we really

do appreciate working with you.

So we are here for a great conversation today. And

I think you're going to be learning a lot. I think we're

all going to be learning a lot.

And before we get too far along, I want to make

sure that Liz goes over some of the credit information with

you. For many of us, we appreciate getting these

continuing education credits, and so I appreciate all the

hard work that goes into that, Liz. I know it's a lot of

work, especially to get the CRCs.

So, Liz, here you go.

LIZ PERSAUD: Thank you, Carolyn.

And thank you, Caroline, for helping us with the

logistics and setting up everything for us to use Adobe

Connect. We really appreciate the partnership with you and


So welcome, everyone. Carolyn said that we offer

credits for our webinars. So we're happy to say that we

offer CEUs, continuing education credits; and CRCs that are

being administered through the Commission on Rehabilitation

Counselor -- the counselor certification, so CRCs.

So if you need CEUs or CRCs, the thing that you

need to do is e-mail me. My e-mail address is

liz@passitoncenter.org. And there it is displayed on the

presentation there.

And I need you to send me an e-mail with the name

and date of the webinar that you are looking for. And

often we offer more than one webinar with some other

programs that we've got going on. So just make sure you

include that information in there.

Send me your full name, the organization that

you're affiliated with, your address, and your e-mail

address. And then I also need your date of birth. The

reason why we need your date of birth is because

specifically for CEUs that are offered here through Georgia

Tech Professional Education, they enter you into a


So let's say today is the first time you're

requesting CEUs. The next month when you request it again,

you're already in the system, and you're ready to go. Then

it should be a very speedy process, and we're going to get

you that information.

So if you can just contact me with all of the

information that I have listed there, I then submit that

information to Georgia Tech for CEUs or to the CRCC for

CRCs. And then they will administer the verification forms

and all the information to you.

So again, if you have any questions, you can let me

know after the webinar, but that's pretty much the

information I need from you.

I also wanted to let you know that, for every

webinar that we have, we put up an evaluation through

SurveyMonkey. And we appreciate it if y'all would take a

few minutes after the webinar to just evaluate us.

Give us your feedback on what you learned today;

how you'll be using it; and how you would like us to

present information in the future; what topics; does this

webinar platform work for you; are you having any issues

with it; are there other ways that we can really work with

you on training.

We appreciate the feedback that y'all have given us

through the years here with Pass It On Center. We

definitely take a look at that. As we were prepping for

this year and the schedule and our upcoming webinars, we

looked at all of the evaluations from previous years and

previously and just looked at everything that you

recommended and incorporated that.

So if all of y'all have requested a lot of these

topics, then you absolutely know why, because we really

take to heart and value the information that you're giving

to us.

So again, just a few minutes. It takes less than

five minutes to plug in all the information into

SurveyMonkey. If you'll follow that link and fill out the

evaluation, we'd definitely appreciate that.

So we are going to be -- well, actually, before we

jump into the topics, I wanted to let you know that we

are -- Caroline mentioned that you guys can record the

webinar if you feel free to do so, but know that Kimberly

Griffin -- she is our transcriptionist -- is on the webinar


And hello, Kimberly. We appreciate the work that

you do to support us.

Kimberly is recording the webinar, and she will be

getting it up on the website very shortly along with the

written transcription. So Kimberly transcribes today's

webinar, and we have it up on the Pass It On Center website

under the webinar page. So just wanted to let y'all know

that we'll have that up there in about three to four weeks

so you can access it later on for reference as well.

So jumping ahead into the topic of today's webinar,

again, we're focused on a number of different aspects of

reuse to different types of equipment and extending it.

You know, oftentimes we talk about computers and

durable medical equipment like wheelchairs, walkers. But

there's so many other pieces of equipment out there that we

really need to focus on.

And so many requests that we get in from

organizations and individuals that are not maybe able to

afford equipment, or they're in a rural part of the state

or the country, and they just want to know alternate ways

of getting various types of equipment.

So the three that we're going to be focused on

today are: Bariatric durable medical equipment, and those

are for individuals who are overweight or need larger

devices, durable medical equipment; CPAP machines are for

people that are diagnosed with sleep apnea; and then AAC

devices, which is alternative augmentative communication,

communication devices. So those are the three topics that

we're going to cover today.

And we have some learning objectives up here that

y'all can definitely scan through. But basically we're

going to understand device needs for specific diagnostic

populations, and as I mentioned, especially for individuals

that are underserved by reuse programs, and how can we

support them in all aspects of their life, whether it's on

the job or being independent at home, community living, at

school. All aspects of life.

So we want to become familiar with the recommended

sanitization strategies to make communication and

respiratory devices safe for reuse by a new user without

incurring additional financial liability for reuse


So we're going to definitely look at those

intricacies and how we can follow those protocols, be safe

and effective when working with such sensitive equipment.

And then finally, at the end of the webinar, all of

y'all should be able to identify reuse programs providing

these devices as financial support to those who are in need

of these expensive pieces of technology and durable medical

equipment and how you can access those programs, by the end

of the webinar and then also through the reuse location

database on the Pass It On Center website.

So all of y'all -- Caroline did a wonderful job

introducing us, but our speakers today are Carolyn

Phillips. She's the director of Pass It On Center. Many

of y'all know her, and she's a wonderful presenter, and

she's going to be lending her expertise on AAC devices and

communication devices.

I'm Liz, and I'm going to be talking a little bit

about bariatric equipment.

And then I'll be passing it on to Trish Redmon, who

is one of our consultants with Pass It On Center. She's

going to be talking about respiratory devices and CPAP


And I just wanted to give a special shout out to

Trish for all her work in helping us develop these

PowerPoints and collecting all the information.

So thank you, Trish. We really appreciate you.

So jumping into durable medical equipment for

individuals who are overweight and need larger pieces of


So we have an epidemic. Some people call it an

obesity epidemic. However you want to call it, the thing

is that we're all made uniquely; we're all different

shapes, different sizes.

And we all know that there are durable medical

equipment out there: wheelchairs, walkers, hospital beds.

Some are smaller; some are larger. And they need those for

various different types of reasons.

So we can say that individuals who are overweight

need larger pieces of equipment. And we've got one-third

of Americans in our country here that are dealing with

that. So the number is growing, and we need to be able to

serve individuals no matter what their size and what type

of equipment. They're going to be knocking on our door and

requesting to be fully independent.

So we've got some projections here about what it

looks like now as far as statistics for folks who are

overweight and where we're headed. So we've got now about

35.7 of adults are overweight, and 17 percent of children.

And it just shows that depending on your culture, your

ethnicity. It just depends on different aspects of life

and living.

The truth is that individuals are diagnosed every

single day with different types of medical conditions. And

their disability can also factor into how their lives are

being led.

I'm a wheelchair user. I can be as active as I

want to some degree, but I guess by medical terms I still

lead a sedentary lifestyle.

So it can be very difficult just having a

disability in general but then being able to be active.

There isn't a lot out there when it comes to accessible

workout equipment. So keeping in shape often for me means

just watching what I eat. And I have a yummy lunch here

staring me in the face, and it looks pretty healthy, so I'm

happy about that. But there are all these different things

that we need to take into consideration.

So bariatric devices. Why are they needed? Again,

they're designed to accommodate increased weight and larger

physical dimensions. They're physically larger than

standard devices to accommodate patient size or stability.

So somebody who is larger, has more body mass,

maybe more muscle tone as well, can't use a traditional

walker, for example. So they need something that is maybe

a little bit larger so it's safer for them to stabilize on

that walker and to hold onto it.

Made of different materials that are sturdier and

heavier. For example, instead of using aluminum, they use

stainless steel.

And then there is a growing number of individuals

who are varying different types of disabilities that are

underinsured, not insured at all and that live in rural

areas. And that's something that we've said from day one

with Pass It On Center and how -- reuse and how it truly

changes lives and how we're able to use reused equipment to

get those folks independent and moving and in the


So some of the issues when it comes to bariatric

devices. Oftentimes they are definitely more expensive

because of larger mass. They cost more to manufacture,

more to ship and more to store.

It's more difficult for caregivers to lift, move,

and transport. So if you have a larger wheelchair or a

larger walker, how can you get that through doors. Or a

hospital bed, getting it through a traditional standard


Emergency teams don't always have what they need to

accommodate somebody who uses bariatric equipment. So we

need to really take a look at that, and why is that? How

can we advocate for that on community levels?

And most hospitals aren't necessarily designed to

accommodate bariatric patients. They don't necessarily

have AT readily available.

Again, somebody with a physical disability, going

to the hospital and advocating for a standard Hoyer lift or

a standard transfer board.

Oftentimes I've been in medical situations where

it's been wonderful, and you snap your fingers, and it pops

up. And oftentimes it's taken almost an hour or an hour

and a half for them to bring a standard Hoyer lift because

it's just not something that seems to be readily available

or across the board a protocol or a standard.

So that's something that we really need to work on

as a community. But not just standard equipment; again,

bariatric equipment as well.

So standard versus bariatric devices. For standard

DME, durable medical equipment, it varies slightly. But

usually up to 250 pounds capacity, and some of it can go up

to 300 pounds capacity.

For bariatric equipment, it varies from 500 to 750

pounds capacity. That's the range there. And some that

even go up to 1,000 pounds.

Everyone, no matter who you are, needs to be

responsible for your AT, for your durable medical

equipment, you and your circle of support.

So anyone who uses AT definitely should check

specifications. No federal laws address standards for

bariatric equipment.

And we've got here a table. On the left it shows

the device. So we've got folding walker, manual

wheelchair, a hospital bed that's full electric, and shower

bench. The middle column displays the standard price range

and bariatric price range.

So for a manual wheelchair, the standard price

range is $400 plus. And for bariatric, we're looking at

anywhere from $900 to over $1,000. So there's definitely a

significant increase there financially.

Reuse programs and bariatric devices. A lot of

programs out there -- and we highlighted some here -- show

devices in inventory. So in Wisconsin it's the Wheelchair

Recycling Program. They actually show what devices are

bariatric and specify specifically so you can search.

And then also our wonderful partners in Kansas,

Assistive Technology For Kansans, also show that as well.

So it's great that they have that pegged. You can go in

and search by bariatric equipment, and then up comes the

equipment that you need.

Listing as a need, FREE Foundation offers that

service where you can list it as something that you need,

and then they will definitely look in their inventory and

work with you specifically on what it is that you need as

far as going out and finding equipment.

And then also in Washington State, Bridge

Ministries, Bellevue, Washington, would do the same thing

as well.

So acquiring more bariatric devices. Over here on

the left it says "Leave program donation literature with

weight-loss surgeon's offices." That's just a great way of

advertising that you offer that equipment option and that

you are looking to get more of that equipment into your


So these are just different places that you can

actually contact. It's a great way of starting off on your

marketing. So weight-loss surgeons' offices, support

groups, rehab centers that do post-surgery therapy or just

rehab centers in general.

And again, we often say -- it's a sad thing but

true -- that we have done webinars and talk about working

with local funeral homes. And that goes for anyone that

you're working with.

Kansas has some great information and really great

information when it comes to sensitivity of working with

funeral homes in your community and how you can acquire

that equipment and really build that relationship. So

that's definitely something that y'all could check out on

the Pass It On Center knowledge base.

Publicizing the need. You can post that you have

bariatric equipment or bariatric needs on your website,

write about the increased need in your newsletter, and just

spotlight that your program focuses on that or wants to

focus on it.

And talk to your durable medical equipment

providers in your community about stickers for devices and

really advertising more about that.

So recommendations for reuse programs. On the left

we have policies. And over on the right-hand side we have

the procedures.

So the policy would be: Be prepared to identify

bariatric devices by tracking manufacturer specs. So the

things that we mentioned earlier: the dimensions, the

weight capacity of this specific type of equipment. And

then matching your customers to the appropriate device.

Over on the right-hand side, as I mentioned, we've

got the procedures. So you can add inventory fields for

weight capacity, dimensions. You can identify bariatric

devices physically.

Again, this is another sensitive issue here about

asking customer weight on application. We don't want to

delve too much into privacy issues and saying -- nobody

likes it when everybody comes up to you and says, "Hey, how

are you doing today? How much do you weigh?"

So what about those aspects of -- just like how

they mentioned your age on a certain form. Are you a range

of 25 to 35? So getting creative around that. You have

definitely skirted a sensitive issue, but if you're looking

at somebody who may need bariatric equipment, it's things

that we need to think about when we're matching that person

to the appropriate equipment that they need.

CAROLYN PHILLIPS: Thank you so much, Liz. That's

very helpful information.

And just a few things to add in addition to that.

Just like Liz was saying, or to reiterate, it does become a

safety issue. But I think, as long as you educate folks

and say, "Here is why we're asking these questions," I

found that people understand, especially if they understand

that the equipment is made differently, aluminum versus

steel, and those types of considerations. And so things to


And, once again, thank you, Liz, for walking us

through that.

And, Trish, thank you very much for pulling that

information together.

As we were going through that, you noticed

probably -- I hope you did notice that at the bottom Trish

actually acknowledged where she got the information. It's

not that Trish and Liz and I just went around and made

observations in Atlanta, because we are a chubby state, but

we did want to let you know that we actually pulled this

information from all over the country. And once again,

Trish, thank you.

It looks like somebody has a question. And I'm

going to have Liz ask that question for me.

LIZ PERSAUD: This question is from David Mensch.

And he asked, "Can they send it to other states?"

And I'm assuming that you're referring to possibly

the programs that we mentioned that have it in their

inventory and the ones that can work with you if you need

the equipment.

CAROLYN PHILLIPS: So -- and that's where you would

want to get in touch with the states that we mentioned and

also the AT reuse programs that are around -- around your


And, David, I'm not sure what state you're from,

but one of the things that we are trying to do with the

national network with the Pass It On Center is erase those

state borders so that we can actually get equipment around

much more quickly and help people match equipment in a more

appropriate fashion.

And so we are developing a tool -- it's almost

ready to go -- called NEED AT. And it stands for the

National Equipment Exchange Depot.

And we're hoping that this will be a tool -- I

actually know it's a tool that you can use for this because

I've used it several times -- where you can type in what

you're looking for, and it will tell you where that

equipment is.

And I see that you're from California. Hello,

California. I love your state.

And so what we would need to do is just kind of see

what's available in your state. But then also I have

found, especially with the exchange programs, that people

are willing to ship equipment or somehow get equipment


And it's a little more difficult with the bariatric

equipment. We have found that also happens with some of

the AAC devices and some of the other equipment that we're

going to be talking about in just a moment with the CPAP

and the BIPAP equipment.

So, David, I hope that answered your question. And

we can go into more detail in just a moment.

So I'm going to turn this on over to Trish, who is

going to walk us on through some important information

regarding sleep apnea and equipment considerations. As you

know, this is a big issue for a lot of folks that we work


And so, Trish, take it away.

TRISH REDMON: Thank you, Carolyn.

First of all, I want to acknowledge my source of

information by indicating that the person we've given this

credit to, Connie White Daniel, is also a sibling of mine.

So I've been listening to information about CPAP,

sleep apnea, and sleep clinics for the past 15 years. And

she's contributed information to us about sanitizing

devices in the past.

And this has been one of the areas that reuse

programs have been quite reluctant to approach because of

the concern about the possible transmission of disease if

we reuse respiratory devices.

But we need to be aware they can be reused safely

because they are in hospital environments and in sleep lab

environments every night. We just need to follow the

manufacturer instructions and the suggested protocols for

actually sanitizing these. And we're going to talk about

some additional safeguards.

As we mentioned, sleep apnea goes along with our

increasing tendency to be overweight in this country. And

I want to immediately confess that I'm among the group. So

I'm working on my diet now.

Sleep apnea is an upper airway obstruction during

sleep that causes you to wake up frequently. You may not

realize it, but you're not staying asleep; you're waking

up, going back to sleep, waking up, going back to sleep.

And so it's interrupting your cycles of rapid eye movement

sleep, which is how we rest and how we learn.

We have 18 million adults diagnosed and an

increasing number of young children. And this does go

along, primarily, with the increasing incidence of

overweight and obesity in this country.

And in addition to sleep apnea, we have a really

high incidence of chronic obstructive pulmonary disease.

That's an obstruction of your lung airflow that interferes

with normal breathing. And that can be any time, not just

during sleep.

We have another 12 million people diagnosed with

that plus 12 million in early stages that people believe

are undiagnosed. So we have a lot of respiratory issues.

But we're going to focus on sleep apnea because

sleep apnea requires some fairly expensive equipment.

There are solutions that are very helpful, but CPAP

equipment is very expensive.

Having sleep apnea increases other risks. And we

do have some graphics I'll describe here. We have an

overweight person doing a pinch test on their middle. I

can't quite pass that pinch test myself. But it says

"Obesity is a significant risk factor for sleep apnea. 60

to 70 percent of patients are obese." And that's from the

Journal of Obesity and Metabolism Disorders.

And if we look at that factor, we know that one of

the cues and the eight symptoms is neck size. Believe it

or not, especially in males, if your neck size is over 15

and three-quarter inches, you probably have sleep apnea.

And then our second little graphic shows someone

testing their finger, a little blood stick. In obese

patients with Type II diabetes, the prevalence of sleep

apnea is 86 percent. That's from the Journal of Diabetes

Care. That's a staggering number of people. So the

likelihood that, if you have diabetes, you have sleep apnea

is pretty significant.

And then 76 percent of people with congestive heart

failure have sleep disorder breathing. And that's from the

European Heart Journal.

So we have a lot of things that go hand in hand.

And we'll take a look at even more of those. We have a bar

chart here that shows sleep apnea and related conditions.

And the highest relationship is that 83 percent of people

with drug-resistant hypertension have sleep apnea.

77 percent of people who are obese, 76 percent of people

with congestive heart failure, 59 percent of the people who

use pacemakers, 49 percent of the atrial fib patients,

48 percent of the people with diabetes.

So the relationships are there for most of our

major, critical illnesses. So people need to be checked to

see if they have sleep apnea because we can do something

about that.

If you're not familiar with this, sleep apnea is

diagnosed by being referred to a sleep center. You go in

for an overnight test. And we have a photo here showing

the sleep technologist gluing electrodes to your head.

That's what they do.

I've had my sleep apnea test. They glue electrodes

to your head and place electrodes on your legs. And you

literally go to sleep, and they have you plugged into a

computer with software that monitors what's happening to

your breathing.

Now, if they diagnose you to have sleep apnea, you

come back for a second test to calibrate what level of

pressure you would need with a CPAP machine. I think that

machine stands for continuous positive airway pressure.

And so you hook up a machine with a hose and a mask

to your face. It provides a slight pressure for you to

inhale that air and to keep you breathing so that you don't

stop breathing and wake up frequently.

There are things called BIPAP machines. CPAP

machines have one setting. A BIPAP machine has two

settings, a different one for whether you're inhaling or


This is a very significant issue for people because

it interferes not only with your daily life; it interferes

with your workplace and your learning. Sleep deprivation

affects your productivity, your safety, your decision

making, and whether you get to keep your job because you

may not perform well.

And we have graphics showing an airline pilot and a

truck driver for one very good reason. If those categories

of workers are diagnosed with sleep apnea and prescribed

CPAP machines, they're required to have the data from those

machines downloaded and reported every month to their

employers to retain their jobs.

And all CPAP machines come with cards that track

your usage that the user can't mess with. So you can't

fake that. It gets downloaded. They have some ways to do

that remotely now.

Sleep apnea in children. We won't dwell on this,

but this is becoming a bigger issue as we have more

children who are overweight who then get apnea. And that's

not the only reason.

But one of the things we've learned -- and this is

from the journal Nature, is that learning only takes place

when you sleep enough hours in rapid-eye-movement sleep

because those cycles store the information in memory.

And this explains why, when you were in college and

you stayed awake all night and drank coffee for 12 hours to

take a very important test and you passed it but you didn't

retain any of it the next day. That's why you didn't

retain it, because you literally didn't sleep on what you

stored. So you didn't store the information. You just

took it in, but you never stored it in memory.

So sleep is directly linked to grades and

performance of students in high school. And we have

studies showing that one in four U.S. high school students

admits falling asleep in class at least once a week.

And we know that students for lots of reasons --

and some of it's about all these wonderful electronic

devices we allow them to have in their bedrooms -- are

getting about seven hours of sleep a night when they really

need eight and a half to nine and a quarter hours of sleep.

So this is becoming an increasing issue on our learning.

And we want to focus on encouraging programs to

take devices. So what are we talking about when someone

needs a CPAP machine?

Well, we have pictures here of a unit. They are

getting smaller and smaller every year, which is a good

thing because, as they introduce new models, those models

are being discontinued, and people want smaller ones, so

there's more opportunity for our programs to acquire the

older ones.

And then there are all kinds of face masks, because

if you're a CPAP user, you have a machine which may have a

humidifier. It may have a heated humidifier so that it

doesn't dry out your breathing passages.

There are all types of masks. They're everything

from little nasal pillows like oxygen things that just go

in your nose to full face masks. And these are held in

place with headgear that's usually foam and Velcro or

clamps. So there's dozens of different designs, shapes,

and sizes of headgear. And then there's a hose that

connects the face mask back to the machine itself.

So when you get a CPAP machine, the physician

prescribes the setting. And that's what they determined in

that second study when they did your CPAP titration study.

They determined what level you need.

And so when you get the machine, someone else sets

it up for you, shows you how to use it, adjusts your mask,

gets you acquainted with it.

The user can't do this alone. You can't just go

down to the store and pick up one, although some

experienced users get them off the Internet. But some

states have regulations about this. For example, in

Georgia a respiratory therapist must set up your CPAP

machine the first time. So you must be introduced to it by

a professional.

So the concern becomes: This is a respiratory

device. What if the user of the machine had something that

is contagious?

Because the most contagious things and the most

easily transmitted things obviously can be respiratory.

Well, there are ways to deal with that.

How do we reuse those things safely? And we have a

graphic. And one of the things I'm going to do is not

recommend that you sanitize the peripheral accessories, the

tubing, the face mask, the headgear.

Now, you can safely do that. And we do have

instructions for doing that in the knowledge base. And

basically -- it's very simple. You need to read the

manufacturer instructions. But you can actually sanitize

the tubing and the face mask using things as simple as

solutions of vinegar and water. And that's what they do in

a lot of sleep labs.

But if you want to minimize your risk, we're going

to say, Okay, a better model is to discard the mask, the

headgear, the tubing, the chin strap, the things that come

in contact with the respiration of the person most closely.

And that means we now have the issue of providing a

new mask, headgear, and tubing for the patient. But we can

unplug and sanitize that base unit.

All you're doing with that unit is cleaning the

exterior carefully. You can find that in our knowledge

base also. It's usually with a non-soapy, very mild

detergent or, if you want, with a hospital-grade sanitizing


You need to clean the water reservoir for the

humidifier if it has one. And you may have to replace

filters, because all of these machines have filters for the


And we'll talk about that because now you've

incurred a significant cost when you start replacing the

peripherals. Depends on how you get it. If they bought it

retail, replacing the headgear, the tubing, and the mask

could cost you a couple hundred dollars.

But then we want a professional to match a mask.

You can't just pick any mask and think that the person is

really going to have it fitted properly on their face,

because all of our heads and faces are shaped differently

and are different sizes. So we really need to have an

appropriately fitted mask for that person.

So when you reassign a CPAP device, then you're

going to want a new fitting for the mask, and you're going

to want to require a prescription from a physician. You

can't even buy them over the Internet without a

prescription because someone has to set that setting inside

the machine.

So how can you afford both accessories? That

becomes the issue. Well, here's a clue I picked up first

from my sister, who runs sleep labs, because she encounters

a lot of patients who are uninsured or who don't have

adequate coverage from their existing insurance.

And so she simply -- because she had a purchasing

contract through a hospital, she gave away masks. And her

vendors knew that. And vendors will sometimes provide her

sample masks to give away. But with her purchasing

contract, she's probably paying a few dollars for a mask,

not a hundred dollars for a mask.

So one option is to talk to a local sleep

diagnostic center, probably one run by a hospital because

they'll have a really good purchasing contract. And ask

the center to partner with you to provide the new

accessories. And we'll talk about a model that does that

in a minute.

They do get these at a very low cost. So they

might be willing to partner with you and have credit to

donate those. Or you might make a deal that you reimburse

them the actual cost.

They have a real incentive to have patients to get

the equipment that they need because this improves their

outcomes. So that's another thing to think about for

motivation for finding a partner.

An example of a good CPAP reuse program is the

Reggie White Sleep Disorders and Research Foundation in

West Allis, Wisconsin, and the Sleep Wellness Institute,

which is also in West Allis. This is a large sleep center.

Now Reggie White was a national football league

player, if you remember. And he died partly as a result of

his sleep apnea. And his family helped establish this

foundation in cooperation with the sleep center that worked

with him when he was alive.

And so they refurbish about 25 machines a year for

people in need. And most of the donations for those

machines they refurbish come from patients who upgrade to

new equipment. And they take advantage of their purchasing

contract to acquire those new accessories for their


And I had a really nice chat with Cody Glorioso,

who's the durable medical equipment director at the Sleep

Wellness Institute about this. So if you want more

information, you can certainly find them online and give

them a call.

I checked out our equipment inventory lists and

found that the Kansas Equipment Exchange shows seven CPAP

machines in inventory and one BIPAP.

Now, we need to remember that Kansas has an unusual

situation. They do partner with Kansas Medicaid, and so

equipment that becomes available for reuse is often

returned into the program. But that was interesting to see

that they did have that many devices in inventory.

And I'm sure they could share more information with

us about how they actually refurbish their devices and what

they do.

So how to acquire the donations. My suggestions

are that, one, talk to your CPAP manufacturer reps and

local DME suppliers about donating discontinued models.

Now, some of the most common CPAP manufacturers are

ResMed, Respironics, and Fisher & Paykel. Fisher & Paykel,

they make wonderful CPAP machines, not just dishwashers and


And if you talk with your local DME suppliers about

that, you might be able to partner with them or with the

manufacturer's rep.

You can talk to the suppliers about encouraging

donations from the customers when they upgrade. So they're

not taking trade-ins. But when someone comes to buy a new

device, they could certainly encourage their customers to

donate that device to your reuse program.

And as Liz mentioned earlier about bariatric

devices, we'd like to publicize the need for CPAP devices.

And you can do that with messages on your website, in your

newsletter or in signs in your facilities.

And you can also place information about your reuse

program in the offices of sleep physicians. Now, people

who are specialists in sleep are board-certified. They

usually also have a primary certification in another area,

which is usually neurology; ear, nose and throat; or


So you may find sleep physicians -- you can call

your local sleep lab and ask them who their sleep docs are.

And they would probably be happy to have you do that

because they want all of their patients who need devices to

be able to get them.

So some recommended policies and procedures. One,

we would encourage you -- because there's such a great need

to accept CPAP and BIPAP machines for donation -- but we

want you to be very careful and reassign only to patients

with prescriptions and comply with the state laws for


So those will vary with every state. And as I

mentioned, some do require registered respiratory

therapists, or they may allow a registered polysomnographic

technician. That's a sleep tech's official name. Or they

may not require either of those, but this varies state by

state, like so many things.

For procedures, if you want to sanitize those

things, be very careful. We do encourage you to discard

those accessories and peripherals. Keep the base unit.

Partner with someone to provide those new accessories.

Okay. And I'm going to pass this on to Carolyn to

talk about AAC devices.

CAROLYN PHILLIPS: Excellent. Thank you so much.

Oh, go ahead, David.

DAVID STARKS (participant): I am a CPAP user. And

from any consumers they get replacement ancillary products,

the masks and the tubes, every three to four months. So

sometimes consumers can donate brand new masks, tubes,

et cetera because they failed to use them.

The devices might last a year, but insurance

companies will replace them every three to four months. So

there is an area of possibly acquiring brand-new masks. I

know I personally have an extra one in a drawer. And my

daughter has two. So it's possible.

But used ones, I totally agree about just


TRISH REDMON: Thank you for bringing that up,

David, because you're right.

Having worked with a DME provider as a consultant,

I can tell you that they pay attention to all of that.

Both Medicare and all private insurers have a schedule for

replacement of masks, headgear, and tubing. And they want

to sell as many as possible, so they keep everyone on that

schedule and provide them as many devices as are covered.

So you're right. A lot of people don't need to

change those accessories as often as they're permitted to

by their insurers. And that's a very good point. Thank


Okay. Carolyn, I'm passing it to you. Thank you.

CAROLYN PHILLIPS: I'm just checking to see if

folks can hear me. All right. That's fine.

Thank you, Trish, so much for that great


And, David, thank you very much for sharing your

information. We appreciate it when folks jump in with

their personal perspective and also with good resources.

So we appreciate that.

Once again, great to see everybody on. It's so

nice looking through this list and seeing all of our

friends and colleagues from around the country. So once

again, welcome.

I'm going to be talking to you today in more detail

about reusing AAC devices and helping our folks that have

communication-related disabilities and difficulties.

As many of you know I feel passionate about this

for many reasons, I absolutely believe that communication

is -- it should be a right. It should be something that

everybody strives for and that we all unitedly believe that

folks should have voice and should be able to express

whatever they need to say and however they want to say it.

So I also believe in it because my daughter is an

AAC user. And I had the great opportunity of teaching the

AAC class up at University of Georgia this last semester

with Dr. Ben Satterfield, who's on the Tools For Life team.

We had a great time doing that class. And so some

of the information that I'm going to be sharing here with

you is information that we learned and then also

information we've learned from talking with our

collaborators from around the country.

You'll find that there are pockets of people who

knew quite a bit about AAC reuse. A lot of those folks can

be found in classrooms or in public schools.

There are also folks within our neurodegenerative

disease families that are very well versed in the

importance of AAC and how to integrate that into folks as

they move through various parts in their lives.

So several studies suggest that 8 to 12 people per

1,000 have communication-related disabilities that require

AAC. And two types of individuals really benefit from

this. There's the long-term folks that perhaps have had a

stroke or have cerebral palsy -- and we can get very

specific about it; it's dysarthria, aphagia, apraxia -- or

temporary. And so somebody who might have had a trach or

maybe somebody like me who had my tonsils out.

I had my tonsils out in October, and I actually

used an AAC, and it drove everybody crazy in my family

because I had all kinds of things to say. And I think they

thought I was going to be quiet for a while, but that

didn't work.

Is my mic sounding better? I just wanted to make

sure. Okay. All right. Great.

And there's all kinds of types of AAC devices. I

think a lot of times people think only of high-tech devices

that are dynamic. And there are -- obviously there's

low-tech, high-tech, mid-tech devices.

There's graphic communication boards. Here at

Tools For Life we actually produce a lot of communication

boards that we give out at no cost. And we have people

that reuse those in the hospitals and in other

environments, disaster areas, what have you.

And then there could also be just graphic

communication, wallets, and there are all kind of maybe

sequence boards, what have you that have communication

woven into those.

And then there are the mid-tech and moving into the

higher tech where there's voice output dynamic displays.

We're seeing a whole range of devices coming out,

especially with the evolution of the app and all the apps

that are now out there.

Martha Rust, who is on our team here at Tools For

Life, is actually our lead and one of the folks in the U.S.

who has developed a really dynamic website.

So if you're interested in communication apps, so

if you get, for example, an iTouch or an iPhone or a

smartphone or an Android or an iPad, you can go to our

website and see the wide range of apps that are available,

anywhere from something that's totally free to something

that's $189. So just checking all of those out.

But the point is that there is a whole lot

happening in the world of AAC. And we are seeing a lot of

reuse. Not all of that's captured. And you're going to

see that in just a moment within the data.

But it's important that we work with our partners

in the school system and that we work with our partners

that work within the ALS, Lou Gehrig's Disease, community

or the Huntington's Disease community or muscular dystrophy

community, and we explore what it is that they're doing and

how can we help them get the communication needs met.

So children with communication-related disabilities

that are not introduced to AAC early enough often have a

delay in communication development.

I can tell you that for a fact. I live with a

little one who had that exact experience. She was living

in the streets of Deli. And communication -- she's one of

the best communicators I know, but she was not introduced

to AAC until she arrived here in the U.S.

So the lack of AAC awareness and expertise among

clinicians is also an issue. And the standardizations,

like benefits and figuring out how do you integrate that

successfully? Those are still conversations that we're


And they're also from standards that are being

ignored. And so how can people realize that it definitely

needs to be something that needs to be considered. We need

to really focus on communication. And it goes back to that

core belief that everyone has the right for communication.

In Georgia, one of the issues that we had, we were

one of the last states that actually didn't have a really

solid funding stream for folks who needed AAC devices if

they were going to get it through Medicaid. That was a big


And so we're excited to say that that has now

changed, thanks to our collaboration with a lot of folks in

the disability community here in Georgia but also with the

Georgia Advocacy Office.

So just a little information here about the

Assistive Technology Act programs and the number of devices

that they did when it comes to AAC. And Trish pulled this

from the CATADA 2011 data.

And so you'll see here, when it comes to exchange,

there were 93 devices that were exchanged and a total value

of about 89,000 -- $2 over 89,000.

And then refurbished, reassigned, when people got

it in, got it back up to manufacturer standards and then

got it back out, there were 216 for a total value, as far

as the device is concerned, of 184,000.

And then open-ended loan. We had about 375. So

the value of that is around almost 350,000.

So we are seeing that this an activity that is very

active in the U.S. when it comes to the Assistive

Technology Act programs. It's even more active within, as

I said, the ALS community in Georgia alone.

We have about 1,300 folks that have devices through

the ALS community here. And that data was not collected by

the AT act program. But we do work very closely with our

ALS community.

So when we look at 1,300 just in Georgia, compared

to the numbers that we're seeing here, it is one of those

activities we want to pay attention to and also know what

communities could benefit from this.

I was visiting a peer of mine, Clayton in Arizona,

and we actually talked to several folks within communities

that specialize in all kinds of assistive technology. And

AAC was one of those. And so it was good to see how they

were working together to try to make some of that happen.

So if this is an area that you want to go into, we

definitely want to continue the conversation.

So -- oh, and hi, Clayton, I was just told that

you're on.

Okay. There's a question here of "What is CATADA?"

And that actually is the center that's collecting

all of the data for the Assistive Technology Act programs.

And you can go to a website. And I'll put the link up in

just a little bit. And you can explore the data. So

there's some really great information up there, and I'll be

happy to share that with you.

So here's some questions that I'd like you to think

about when you're thinking about, Gosh, do I need to go

into AAC reuse? And so think about these things.

What does your community need? If you are in a

rather small community where there aren't a lot of folks

with communication-related disabilities -- I was in a

community not long ago where the total population was 800

people, and I was talking about AAC reuse.

And they said, "Oh, well, we have one person, and

then we reused the devise for somebody else in the


And I was like, "Cool."

But if you're in some of the larger cities --

rather if you're in a specific areas in the U.S. where

there are perhaps folks that have had more strokes or what

have you, then you'll see more activity within this area of


You can also find that there are a lot of AAC

devices on our exchange programs. So I'd encourage you to

figure out what is it your community needs.

Also looking at: What do you have? What type of

equipment do you have? A lot of teachers have access to

equipment that they didn't even realize because it's maybe

in a closet in another school three miles down the road.

So figuring out: What AAC is available?

What type of AAC would you like to reuse? Some of

these AAC devices are absolutely incredible. I kind of

wish that the manufacturers of the AAC devices developed

cars or some other type of technology, because they're so

durable, and they last forever.

For example, I saw a Liberator come through not

long ago that had to be at least 18 years old. And it

still worked. It was perfect. They said it was portable,

but not so portable. Depending on how strong you are,

that's how portable it was, because it was huge.

Also looking at what vendor/manufacturer

relationships you have and what do you need. A lot of our

vendors and manufacturers have been incredible when it

comes to reuse and helping folks get their AAC devices, not

only know what it is that they have in their closets or

what they have available but also knowing maybe perhaps

what it is that this person that you're working with just


So will the device that you have meet the needs of

the individual? And this is one of those areas that you

want to make sure that you're very clear about.

I think a lot of times people just say, "Oh, you

need a communication device? Here's a communication

device." And that is a great way to set someone up to

fail. So you want to make sure that you're being mindful

of all of that.

You also want to think about what relationships you

have and what relationships you need with a speech language

pathologist and also an assistive technology practitioner

or assistive technology specialist.

Sometimes we're needing things to mount a device.

And so you might want to involve other folks when it comes

to figuring out what's the best placement? Also think

about muscle fatigue and how do you think about these

things. And so I just want you to know there's a lot to

this, and so think all of that through.

Some of the other things that you want to think

about when it comes to if you do AAC reuse is, who is going

to train folks within your program?

Sometimes this is where we ask folks, "You know, it

might be good if you specialized in just getting the

equipment up and running and getting it up to manufacturer

standards and then get it out to speech therapists within

your community or get it out to support groups within your

community that have a contract or a working relationship

with a really knowledgeable speech therapist.

What technical assistance are you going to need?

If the device is still being manufactured, is that

something that you can go back to the manufacturer and get

some technical assistance? And just making sure that folks

know that information.

I've seen some of these programs where they're just

fabulous, and you get this packet of information, and

you're able to contact the manufacturer and get support.

And then there are others where there's no information.

Basically you get the device, and that's it.

And so you can go online. And we have some of

these resources with the Pass It On Center where you can go

online and get to the manufacturer and download specific

booklets and get that information to folks. So very


Also think about who's going to repair the device.

A lot of the devices that I've seen, they are really tough,

and they take a beating because they're dropped from tables

or chairs or wheelchairs or just dropped in general or when

someone falls.

My daughter used to fall all the time. And her

speech device literally would get banged up left and right.

So thinking about that repair plan. And so is it

going to be the school that's going to -- is it going to be

the AT person? Who is going to replace that? But also

whenever it's in for repair, and then also who's going to

repair it.

And then what AAC -- helping you decide what AAC

you need to reuse. How do you make that decision? And

when do you recycle? So what's the line there?

I had a great conversation with some of our

manufacturers, which I feel like have definitely been a

good friend to the reuse community, especially within the

AAC community.

And they actually threw out this term of when do

you have DNR, do not recycle, kind of like do not

resuscitate but do not recycle. And there should be a

point. And so thinking about that. Even if you get a

great device in, if there's no technical support for it or

if no one knows what it's even called anymore, if you

really don't have a need for it, what is your next step?

You could list it on an exchange. For example,

when we get the NEED AT -- when we launch that officially,

you could list it there. You could list it on your state

assistive technology exchange.

Or you might even think about how do I responsibly

recycle this piece of equipment? And if you want to know

more information about end-of-life recycling of equipment,

you can check out the Pass It On Center website. We did a

webinar about that not long ago, and it should be posted


So here are some tips for successful AA[C] reuse.

You need to restore devices to the manufacturer's

specifications. Reuse programs that refurbish devices, you

need to really ensure the device functions the way the

manufacturer intended.

If it doesn't, then you need to fully disclose that

so that folks understand. But you need to get it as close

to if not perfectly running. There are several reasons for


One, you don't want to create a negative experience

with AAC for folks that you're working with. It can be

very -- speaking from personal experience, it can be very

frustrating if you don't have real positive experiences

integrating AAC into your life and into the community of

the individual. It already can be perceived as something

that's different.

And so if you have something that sometimes works

and sometimes doesn't, if you have it so that it's very

complicated and you have to remember not to push this

button on this screen -- which I've seen that -- and that

person pushes that button on that screen, and then they're

lost, if you will, within the device it can be very


And then those communication opportunities can

disappear. Because anyone who knows this, you're toggling

not just the issue of the device, but what you're really

trying to do is help somebody effectively communicate. And

you don't want to set someone up to fail right off the bat.

Refurbishers, it's important that you don't modify

devices to do different things. That gets into

remanufacturing, which we say across the board is a bad


These AAC devices have been tested, and they've

gone through all kind of specs, protocols, and rigorous

testing. And there's a reason why they're designed the way

that they're designed. And so it's important that you

don't create new purposes just because you can. So if the

device is not meant to be used for a specific purpose that

you've decided, Hey, I can make it do this, I can make it

control my dishwasher or what have you, it's best not to do

those things. So make sure that you abide by the

manufacturer's specifications.

The other reason why we want to do this and we want

to pay attention to this is we want to make sure that we

have a positive relationship with manufacturers.

If you get a specific device in -- and I could list

any number of devices that are excellent devices that are

AAC -- you don't want a person to get a bad taste in their

mouth and then say, "Oh, this whole company doesn't work.

They create bad devices," just because you gave them a

device that perhaps the battery was dying or perhaps the

speaker didn't work, or they couldn't adjust the volume or

what have you.

So make sure that you're being mindful of that

because we want to make sure that it's a win/win/win for

everybody: the manufacturer, for your program, and for the

individual, especially the individual.

The other thing is that a lot of times people are

trying out devices for the first time, and they're doing it

on a loan basis. They're trying out to see who is the best


Here in Georgia, talking about AAC and the

importance of folks being able to communicate, one of the

things we do is encourage folks to go back to our assistive

technology resource centers in Georgia so that they can try

before they buy. And also, when they're trying, not just

one other device but maybe five different devices to see

what works.

So we want to encourage you to think collaboration.

Think collaboration. Think about it in every aspect. So

whether it's the training, the implementation, the repair.

Are there some great partners that you could have? And who

are those partners? So consider partnering. Work closely

with your vendors, as I said, but also your licensed


And really be aware of if there is a recall or some

kind of reported incident with the device. A lot of times

it's our practitioners that know that best.

And then the whole thing that I said earlier about

a licensed practitioner assistance. Getting somebody that

already has pretty good knowledge in this.

Now, that's hard for a lot of us because we work

and live in rural areas. And so I found that sometimes

that's when it's best to reach across state lines. Our

world is getting very small, which I think is actually

pretty darn awesome. And there are things like Facebook

where you can get in touch directly with DynaVox, for

example, or PRC, Prentke Romich Company, and communicate

with folks. The folks that even developed the app

Proloquo2Go have been very helpful when I've asked

questions before.

And so thinking about who you can collaborate with,

who can you pull into your circle of support so that you

can really make sure that you are doing appropriate

matching, appropriate training and then that activity of

following up and following through. So I would encourage

you to think about those things.

So that leads naturally into another tip of

successful AAC reuse, which is appropriately matching and

informing and training.

And there are a lot of things you want to consider

when they're thinking about AAC and when it comes to

matching the individual. And that's a whole, long,

expensive, semester-long discussion, if you want to come to

Georgia, and we'll be happy to teach you at the University

of Georgia next semester. But it's an exclusive

conversation that you have to have a very thoughtful

approach to.

So matching and training on a device is very

important. And making sure that folks understand how to

use it, how to use it efficiently, how to grow with this


There are whole discussions about core vocabulary

and systems that use symbols, systems that use symbols and

words, how to make pages. I mean there's a whole bunch to


There's a device that we just got recently that a

family went out and a speech therapist who was not well

versed in AAC recommended, and it was an $8,000 device.

Their child used it for all of two days, and they showed up

here and gave it to us and said, "This doesn't work."

And I said, "Well, actually, it does work. It just

wasn't the right fit."

And so that was a very frustrating experience for

this family. And as I said, we want to make sure that the

individual is successful. So as much as we can, create

those opportunities for success.

So the other thing is that folks need to be aware

that the device that they're being given is reused, that it

was previously used.

My first -- my daughter got a device, as I said,

the first time she was in the public school system here,

and so our first experience with reused AAC devices in that

setting was the device that she got which had literally

every piece of information about the student who is another

student that's in her classroom. And we knew all kinds of

things about -- I'll say Ricardo. But we knew all kinds of

things about him that we did not need to know.

And there were some really clever things that they

had done with this device, but I'm not so sure -- I would

not feel comfortable with some of the information that they

had on that device if we had that information and it had

been given to somebody else.

Because they had pictures of the family; they had

the address of where they lived; they had all kinds of

information when it came to their health insurance numbers

and all of that. And that's not information that everybody

needs to have access to.

We also knew routines about Ricardo that we didn't

need to know when it comes to going to the restroom and

things like that.

And so just be aware that this is personal, and

it's important that we do our due diligence here and that

we do wipe these devices.

So here are a couple of reasons, as I said, a

couple of things that you want to think about when it comes

to knowing the individual that you're assisting. And so I

want you to consider these as I talk about this and just be

aware that there are times when you'll meet somebody, and

every time it's different as to why you would choose a very

specific device.

So getting back to that idea that you don't

necessarily just use whatever is in your closet or what you

have your hands on. This is where it's helpful, as I said,

to have a greater network that we can work together and get

some good information and get these devices moved around.

So within the neurodegenerative disease process,

you want to be aware of the stage which the person is in.

I did a whole presentation on this topic alone this last

semester and looking at when do you integrate assistive


With some of the folks that I've worked with -- and

my mom has Huntington's Disease. I have a lot of family

members with Huntington's Disease, which is a

neurodegenerative disease process -- there's some denial

where they're like, "Oh, I sound perfect."

And I'm like, "I have no idea what you're telling


And so sometimes, when you're trying to integrate

assistive technology, it may be way past when you would

have wanted to. And so be aware of that.

And being gentle about this but also be proactive

in knowing what's coming down the road and knowing when you

want to integrate what solution.

If you know that somebody, for example, is going to

be an eye-gaze user down the road, that they can right now

walk and talk and all of those things, then you want to

move slowly, as the person progresses and as the person

needs, into other solutions.

And that's where, once again, our loan libraries

come in very handy within the assistive technology programs

around the country. Being able to access devices to see,

okay, what's the best fit here.

And this is where we can help, because I have found

that there are some devices that a person may use for

12 years, and they may be living through having ALS, Lou

Gehrig's disease, or they might need it -- you might have

thought, "Oh, they'll be in this stage, and they'll use

this for a year," and they might use it for just three

weeks. So it's just a matter of figuring those things out.

The other thing is the importance of archiving

voices. And if you can catch some of these processes early

enough, figuring out a device where you can archive an

individual's voice and then also save those files and

transfer them from device to device.

And that can be a very, very important and very --

just a wonderful thing to do for somebody. And so those of

us who have been in the field for a long time, I think a

lot of us have rejoiced at being able to do that for

somebody and then also been like, Gosh, I wish I had

thought of this about a month ago.

So the other thing is knowing the person you're

assisting. You want to make sure that you are aware of how

they communicate, when they communicate, where they


There are low-tech-device solutions, low-tech-AT

solutions that I use in a restroom that I wouldn't use in a

classroom. And some of those can be considered for when

you would want to reuse something, how you'd want to clean

it. Making sure that you're thinking of this person in all

their communication needs and when they need assistive


And so that's when reuse really can help. If you

have a funding solution that will only pay for one device,

then maybe thinking of other options for different aspects

of the person's day.

And then also considering the individual's

initiative and expertise. There's somebody that I was

working with who I was not really expecting them to really

jump in and really embrace AAC, but they are a big computer

programmer, and they just jumped on this and used it until

literally the day he passed.

So it's pretty amazing. What a lot of it does come

down to is how much of the initiative is that person --

what is it that they really want to say and then some of

those expertise and the comfort with some of the devices.

And the device that he was able to use was a reused

device. And so very, very happy. And the family was

thrilled that this person was able to use this device.

There was another individual that we worked with

who wanted to borrow -- he used AAC, and his wife was going

to give birth, and his device broke. And so he wanted to

be able to support her.

And it was very cool, so he used a reused AAC

device while his other device was being repaired to support

his wife and say, "Good job, honey," and all of that. And

he actually had programmed in the device the names if it

was going to be a girl or a boy. And he was the one that

actually was able to say this is the name of the baby. And

he was able to roll out and tell everybody, "It's a girl."

And very exciting to see those kinds of things

happen. And, once again, it was because one of our

programs was ready to act whenever somebody needed to


It's important to have family buy-in and also

support and making sure that the family understands why

this person needs to use this device and also has resources

so that they'll learn how to be effective communication

partners too.

So I would encourage you, especially in the area of

AAC, is to really consider your sustainability and what is

it -- how can you create a sustainable program?

And so I put on here "Don't give everything away."

And what I mean by that is a lot of times we'll just give

and give and give. And I think, when I'm looking through

this list of wonderful folks that are on the webinar with

us, I know a lot of you are givers, just like me and Liz

and Martha.

But it's important that you realize that, when it

comes to a lot of areas of assistive technology, but

especially in the AAC area, there's a lot of expertise that

goes into reusing those devices and getting it back up to

manufacturer's standards and having that SLP handy so that

you can help with some of the matching and the appropriate

future matching.

And so I have found that it's important that folks

contribute something to your program. And people are

willing to do that. I have yet to, in this area, find

where people say, "Nope. Not going to do it."

And then, as I said earlier, the vendor

relationships are absolutely vital. You need to make sure

that you maximize those and really lean on the vendors.

Because one of the things that some of the vendors

here have said is that they're willing to jump in and help

out in this area because they know that, if this is a good

match, then perhaps they will be able to have a sale down

the road. Or we might buy a brand new device from them as

we're upgrading our own inventory just because we

appreciate how much they've been helping us out. So really

work with that vendor and strengthen those relationships.

And then, if you have a person who is in the

education setting, making sure that you are indeed working

with the school, in the class, teachers and with the

students and all of those folks. But making sure that you

utilize the collaboration that you can have with that

speech therapist. That's very, very important.

And then looking at other grant opportunities. Up

here I have the Muscular Dystrophy Association, that's MDA.

Usually I don't use acronyms. I'm sorry about that. So

Muscular Dystrophy Association.

They used to be extremely generous with giving

scholarships and grants out to folks. And now the economy

has pulled in a bit. They are not able to be as generous,

but they still are able to help in some significant ways.

A lot of times, especially within the ALS

community, they have lending libraries that are basically

reusing. They're extended loans, open loans. And then

refurbishing and reassignment.

And so you can often find support where you can

actually obtain a device even through MDA or through some

other grants. And then personal and corporate donations.

And the other one that I think has really stepped

up lately that I keep hearing about is whenever a church or

a synagogue or another faith-based organization steps in to

assist. And so make sure that you do know all the

different resources so that you can toggle those resources

and help the family and the individual really get the

device that's going to meet their needs.

I've also seen where -- and this happened

recently -- where the Children's Health Care of Atlanta was

able to do an evaluation for an individual, and that was

covered by insurance, and they were able to do an

evaluation for a reused device. And that was great. So

very, very good.

So as you develop this fabulous AAC reuse program,

I've got some tips for you. And obviously, as I said

starting out this webinar, we do want this conversation to

continue. So if you do indeed want to jump into the AAC

community and the AAC reuse world, please let us know.

But here's some things: Device maintenance. That

is an area where you could actually -- as you're building

something that's sustainable, you could think about that,

that a lot of devices do need to be maintained, and is that

something that you have the expertise to do?

Also looking at volunteers, how volunteers can help

you. There are some speech therapists out there who are

volunteering some of their time. When I was teaching this

class with all these great students, we had some amazing --

there was over 25 speech therapists that are getting their

master's. They were very willing to volunteer and also

help with the follow-up, which is great.

And explore what new areas of service, thinking

about AAC but other areas too, and what makes sense. So

maybe, if you're reusing AAC devices, you might want to

think about getting into the area of mounting and figuring

out, well, how do you place this device and how do you make

it so that somebody can be successful in every environment.

And then reclaiming devices. Getting the word out.

Letting folks know what you're trying to accomplish with

your reuse program. And letting them know that, yes,

indeed you can get this device to us, and we can find it a

new home, or we can get it into a recycling, end-of-life

phase and keeping it out of the landfill. So thinking

about that service too.

We have a lot of folks that still donate AAC

devices to our program from years and years and years ago.

So we got a pretty positive reputation for that. So

reclaiming those devices.

So do expand your program to meet multiple

community needs as you grow. Think about that. My dad

used to tell me, "Work smarter, not harder." And so think

about that as you're growing your programs and really

figuring out what's the need.

And don't overextend your resources or expertise to

meet the demands. So I would encourage you, once again, to

have a planful approach as you're thinking about all the

things that we talked about today, from bariatric equipment

to CPAP to AAC.

And then, once again, I'm going back to what my dad

used to say. "Do what you do, and do it well." So I'd

encourage you to think about that as we move through this

last slide in this section.

It's the strategies for acquiring more AAC devices

for reuse. Publicize the need. Get the information out

there on websites, in newsletters, in support groups. Make

sure that people know that you can be a resource but also

that you're getting equipment in.

Network with providers. Make sure that those folks

know that you are taking this type of equipment in. Also

network with the rehab centers who have folks that

temporarily need AAC devices. And also, as I said before,

working and being very aware of the folks within your

community that have that neurodegenerative disease process

happening and being aware and networking with those.

And find ways to develop public awareness about

folks with speech-related disabilities and how the world of

AAC can really help, that it's an important partnership,

and really creating those avenues for success. Very, very

important. So think about all of those things.

I do hope this has been very helpful. I know I

learned a lot. And I do hope that you learned a lot. We

would love to hear your questions and/or comments.

And right now I've got up here the SurveyMonkey

link. And so I'll post that again. Here. I'll go ahead

and post that again.

So what questions do you have for us?

CAROLINE VAN HOWE: If you have any questions or

comments, you can either make them in the chat area, or you

can unmute your microphone and make them with the voiceover

IP. The microphone icon is in the upper toolbar.

CAROLYN PHILLIPS: Hey, everybody. Thank you,

Caroline. It looks like we had a few things that folks

were writing in here.

Jamie, of course we're thrilled to always help you.

I hope this was helpful for everybody. Thank you. Thank

you. So I think we all have a lot of work to do.

And we do encourage donations for AAC devices,

actively encourage that, yes. And it's just a matter of

getting the word out there and letting folks know that

there's an avenue, there's a place that you can give these


And, Vivian, it looks like -- oh, thank you,

Vivian. Gracias -- my friend Vivian in Puerto Rico -- for

posting the CATADA information. And thank you, Trish,

also. Very, very helpful. I was going to jump back and

post that myself. But thank you for doing that.

So any other information? Any other ways that we

can help you, please type that in.

LIZ PERSAUD: Allen says thank you. And he says,

"Can you e-mail me the presentation when it's ready?"

And absolutely, Allen, we can certainly do that.

You can actually also access that on the Pass It On Center

website under the Webinar tab.

If you scroll to the bottom, it says "Archives,"

and you can get it there. But I'd be happy to send it to

you. And we should have that up there before the end of

the week, if not before.

We also have -- Jamie has another question. She

has two dollar signs and a question mark, and "donations

for giving devices" with a question mark.

CAROLYN PHILLIPS: So yes, Jamie. I'm assuming

that you're asking should you collect money for folks

donating to you. And I, of course, say yes.

I think that's very important to think, with every

single step, sustainability. And if you can encourage

folks, just let them know what you're going to do with

those dollars, that the donation -- it's great to give the

device, but it's even better when you can get the device

and also be able to keep your program operating.

A lot of people don't think about all those other

things that you're going to need to purchase. So you might

need to have specialized tools.

You might need to -- obviously you'll need to get

equipment. And we didn't really cover this part. But we

have this all over the Pass It On Center website when it

comes to sanitization. Not just cleaning the data off of

the AAC devices but also cleaning the devices themselves.

There's one webinar where we were talking about how

many diseases are passed even from keyboards. So we want

to encourage people obviously not to pass that on. So

don't pass that on. So I hope that's helpful.

And then Jane. Hello, Jane Gay. It's good to see

you on here. And it looked like you had a question for us


LIZ PERSAUD: "What state programs have a

relationship with their Medicaid to encourage reuse


CAROLYN PHILLIPS: So, Jane, this is a very

exciting area where we're seeing more and more folks

working with their Medicaid agencies.

And Sara Sack, as y'all know, who is not only the

director of the Kansas assistive technology program, she's

also on staff here with the Pass It On Center, has been

specializing in this area in particular. So we're excited

about that and some of the headway that we're seeing in

some of the states that we're working with.

So we're seeing some activity actually in a lot of

different states, Kansas, in particular. But there are

some of other states that said, Yep, we definitely want to

learn more, participate, what have you.

Some of the states that are in that process of

learning more and really being pioneers and trailblazers,

if you will, in this area include South Dakota, Delaware,

Oklahoma, Georgia.

And we're starting to see where folks are looking

at working closer with their Medicaid in order to encourage

this reuse.

And, Jane, definitely we'd love to talk to you

more. And anyone else, if you have questions about that,

let us know. And Sara obviously is awesome to work with,

and she's got a lot of expertise in this area.

And, oh, yes, Trish. Excellent point.

Our August webinar is indeed focused on Medicaid

and AT reuse. It sure is. And so thank you so much for

putting that out there.

Any other questions, anything else we can do for

you, please feel free to let us know. And it looks like a

few of you are typing, so I'll wait for just a moment.

Oh, the date of the August webinar. And, Trish, do

you have that handy? It's usually the last Tuesday, but

we'll actually get that date right to you.

LIZ PERSAUD: It's the last Tuesday of August.

It's August 28th. And it's "Medicaid. A Look At Reuse in

Current Programs." Joy Kniskern with the Pass It On Center

will be leading that with Sara Sack from Kansas.

TRISH REDMON: Jane, we are also working with Sara

to develop an actual, if you will, how-to guide for reuse

programs based on the experiences of the 18 states she has

consulted with. So that's our July, early August project

is to actually assemble that information in a fashion that

we can share with others.

CAROLYN PHILLIPS: Oh, great. Yay, Jane. I can

definitely see what that says. Yay. I agree. We really

can use that.

And it's my friend Vivian that's posting all this

great information. Vivian, let us know, and we'll send you

the check for working with us. You've done a great job

helping us out.

LIZ PERSAUD: Here's Vivian's information. Vivian,

this is wonderful.

Vivian says "There is also another teleconference

training called 'Overcoming Medicaid's Most Common Reasons

For Saying No to Durable Medical Equipment Requests:

Turning No Into a Yes' on June 28th from 2 o'clock to

3:45 p.m. Eastern."

And then Vivian also says: "I've received this

information." And she's sharing. "Diana Straube and Jim

Sheldon of the National AT Advocacy Project will be

presenting the session. The session has been approved for

1.5 hours of continuing education through the State of

Louisiana. And there's a $35 registration fee per phone

line. And registration for the teleconference will be

posted on the National AT list serv. You can obtain

registration through Lynn Urquhart. And there's Lynn's

e-mail address right there."

Thank you, Vivian. We really appreciate that. And

that sounds like a wonderful, very informative webinar.

CAROLYN PHILLIPS: Yes. Thank you, Vivian. I just

copied it because I'm going to send it to our team to

participate. So thank you very much. That's great.

Any other thoughts, comments, what have you? We do

obviously want to be respectful of your time. And it is

now, according to my clock, 3:33. So thank you so much.

Once again, thank you, Liz, for being my


Caroline Van Howe, thank you so much for always

helping us out and being there just in case. We appreciate

you guiding us through.

And then a big, big, big thank you to Trish Redmon,

who pulled this together for us. We couldn't have done

this without you.

So best of luck to all of you. Please keep in

touch with us. And we definitely are here to help you.

So thank you so much for working with us. We love

working with the Pass It On Center and especially because

we get to work with y'all.

Any closing thoughts, Liz?

LIZ PERSAUD: Thank you, everyone. Appreciate your

time today. Great information. And feel free to get in

touch with us. Appreciate it.

CAROLYN PHILLIPS: Any closing thoughts, Trish?

TRISH REDMON: I'd just like to thank everyone. I

think these are critical areas, and we realize there are

serious challenges in approaching them. But it would be a

wonderful service if we can do more in all of these areas.

So thanks to all of you for participating. And

please share your experiences if you've had them in these

areas. And we'll share them with everyone else in our

knowledge base.

CAROLYN PHILLIPS: Excellent. All right. Thanks.

Y'all take care.