(upbeat music)
Welcome to Hadley Presents.
I'm your host, Ricky Enger, inviting you to sit back,
relax and enjoy a conversation with the experts.
In this episode, we discuss finding
and utilizing rehabilitation services after vision loss.
Our experts are Kendra Farrow
of Mississippi State University,
interviewed by Hadley Learning Expert, Steve Kelly.
Welcome to the show, both of you.
How are you?
Hey, Ricky, how are you?
Hi.
Wonderful Steve.
Hey, Kendra.
So good for you guys to be joining us.
I know there's a lot to cover.
We'll probably just barely scratch the surface,
but there's gonna be a ton of wonderful information here.
Let's start out by actually having you guys
tell us a little about yourselves
and kind of what you do.
We'll start with you Kendra.
So my name is Kendra Farrow.
I work at the National Research
and Training Center on Blindness and Low Vision,
which is located at Mississippi State University.
In our center, we have several grants.
One is a research grant,
and the other one
is a technical assistance and training grant.
I'm at work primarily
with the technical assistance and training grant,
and I also do a lot of information and referral
for the questions that come in through our website,
or people who call us, just wanting to know
how they can connect with services.
And one of the really neat things about what I do here
is that I have a national perspective.
Before I came to the NRTC,
I worked for a nonprofit agency,
and in that role I was
a certified vision rehabilitation therapist.
I went to people's homes
and I showed them how
they could maintain their independence
after they lost vision.
And so I have both the side
of being out there doing the services,
but now I am at the national level training the trainers
and connecting people with those services
throughout the country.
And it's just a whole different side
of the services that are available.
Absolutely. That is awesome.
How about you, Steve?
First of all, I wanna welcome you to Hadley.
Tell us a little about your background
and kind of how you got here.
Well, first of all, I am absolutely delighted
to be one of the newest members of the Hadley team.
Prior to coming to Hadley,
I too worked at a nonprofit for approximately 12 years.
I also have a certification as a VRT,
and I've got two other certifications as well,
a CRC rehab counselor
and a CATIS certification,
which is just a certification for assistive technology
related to blindness and low vision.
So I too have had a fair amount of experience
working with people out in the field.
And to be honest,
I enjoy what I'm doing right now,
which is kind of advocacy,
I see, on a little bit larger level
in creating lesson plans
and learning objects for a larger number of people.
Although I'm still getting emails and phone calls
related to what we've been doing
on the discussion groups, so that's great.
Yes, absolutely.
Well, I can't think of two people better qualified
to discuss rehabilitation services
and what do you do when you're experiencing
vision loss and how do you go about
finding out what's available to you,
and how do you actually go about
getting access to those services?
And so with that, I'll turn it over to you Steve.
I know you have lots of great questions.
Thanks, Ricky. You know, Kendra,
I think that this is probably
a continuation of some of the conversations
that you and I have had at conferences over the years,
and I just feel like a microphone has been dropped down
between one of those conversations.
Every time we get together,
we kind of kick this can around.
And if you don't mind,
the first thing that comes to my mind is
how many times have you heard this
in the past from a client?
The doctor told me there's nothing more he or she could do.
What does a person do
when they hear that from the doctor
related to diagnosis for their vision
or for their vision loss?
So it is absolutely devastating to hear that
from your eye doctor.
And a lot of times people shut down
and they don't really hear too much that they say
to them after that.
And when they're speaking about what they can or can't do,
they're talking about from the medical perspective.
And there's so much more that can be done
past the medical perspective.
You know, we can look at the adaptive skills
about changing up how you do things
to make them still accessible to you.
There are ways to do almost everything.
We haven't quite figured out driving the car yet,
you know that self-driving car is still coming,
but you know, as far as accessing print,
accessing your household devices,
washer, dryer, thermostat,
all those things around your house that are challenging,
there's definitely ways to do it
it's just a matter of figuring it out.
And I think the thing that's most important
for people to know is that there are ways to do it,
and there are professionals out there
who can help you to learn those skills
that you need to remain independent.
And there's even services
that can help you keep a job.
A lot of people don't realize that,
and I have had many people call me and say,
well, I just quit my job yesterday
so now what can you do to help me?
And that's so discouraging to me
because we could have actually
helped them potentially to keep that job.
But I think it's really important for people
to just realize there are ways
to adapt almost any activity.
So before giving up on something,
before walking away from your golf clubs
or your gardening equipment,
or giving away your woodworking tools,
check out first to find out whether there are ways
to adapt the activity that you love to do.
One of the most common things that I would hear
is, oh, well, I stopped using the computer, the iPad,
phone, you name it,
because I couldn't see the screen anymore.
I think one of the things that I realized
after hearing that is that
unless you have a family member
or someone that you are close to, a neighbor,
who has had a vision loss,
who's gone through the process,
you as someone who's probably had
pretty good vision your whole life,
if you're someone who has an acquired vision loss,
you have no idea that that iPhone
that you just purchased
actually has accessibility built into it.
You just have to know how to turn it on and learn it.
You don't know that.
So you just assume that the only way
that that device is gonna be used
or your computer is visually,
you've never heard of a screen reader before.
You've never heard of a screen magnifier.
Where is that disconnect?
I don't think that doctors...
I agree with you.
The doctor is not saying there's nothing more I can do
because they feel that,
I think what they're saying is that
medically there is nothing more that can be done.
In some cases with macular degeneration
or diabetic retinopathy, you name the disease,
they've kind of reached the end
of the medical procedures that can be done.
But why is there that disconnect?
Like the clients are often left in this limbo of,
what do I do next?
So I think it's because the services
are not traditionally provided within the medical system.
So you break your leg and the cast comes off
and they send you to a physical therapist.
It's all within the medical model of services.
But when you lose vision
and you get kind of to the end
of the medical treatment that can be done
and yet your vision is still not 100%,
the way you would like it to be
to really function effectively with your vision.
There's not a lot that can be done
within the medical model.
Now traditionally, the services provided
are more under the social service model
and not under the medical model.
And I think that's where the disconnect comes in.
So you go to the Vocational Rehabilitation Service Program,
even if you don't necessarily want to be employed
after losing vision, you still go there
because that's the entry point
to pretty much all the services that are there.
Thanks for clarifying that
because I think oftentimes people have no idea
what we initially mean when we talk about
the medical model versus the social services model.
I'm not always sure that the doctor
is aware sometimes of the social services model
or offers it the same credibility as the medical model.
Yeah, I think that that's probably true.
And a lot of times when I've worked with people
that their doctor didn't tell them,
and they're kind of upset about that,
that their doctor didn't tell them,
I tell them, well, look what you've learned.
Now go back and make sure you tell your doctor
how important these services were and how you found them,
because it's important for them to get that feedback
and to know that there are services out there
so they can hopefully remember
and tell their next patients
that are in a similar situation.
The other thing is too that sometimes
you visually can have a pretty good acuity,
and yet you're still having functional difficulties.
So you might be corrected
with the treatments to say 20/40, 20/50,
but you're still getting a lot of fatigue
when you sit and read like a book.
You know, you can't read for more than
20 or 30 minutes at a time,
but you love to read,
you need the services,
and sometimes the services drop you through the cracks
because you might not be eligible
for the services at that point,
'cause you're just not quite at the level
usually 20/70 is a level,
but in some states you're not eligible for services
unless you're legally blind,
which is the level of 20/200 vision.
And I know sometimes
again, we kind of lose people
when we start talking about the 20/70 versus the 20/100.
And you know, the quote,
normal acuity is generally corrected to 20/20.
So anything higher than that,
like 20/70 means that it's less than perfect acuity,
20/100 is further away from perfect acuity
and so on and so forth.
I think you bring up a great point
because I've heard this many, many times.
Someone who has say a 20/70 acuity,
which means functionally anyhow,
that a person might be having trouble reading the newspaper,
generally speaking that person
doesn't consider themselves blind.
And you know, many times the person who is, "legally blind"
which is 20/200, that person has a lot of functional vision.
And in fact, in many, many states,
a person with 20/200 vision
is able with training to drive a car,
say with bioptics, that person
may not consider themselves blind.
I think a lot of times those folks are not gonna go out
and seek the services of a blindness professional.
Why would I do that? I'm not blind.
And so how do you go about seeking out those
services, whether you've entirely become legally blind
or you're just having difficulty seeing some things
and you're wondering like, what's out there for me?
It seems like just this vast array of things
that you would have to think about and know about.
Is there a good place for somebody to start?
So there's definitely stuff out there
in at least every state,
but depending on where you live
it looks very different.
So I'm gonna try to explain
some places you can go to start searching.
So one of the places you could go
is the website that's hosted by my organization
with our technical assistance center.
And the website is O-I-B-T-A-C.org.
And on that page you'll find something
that says state contacts.
And on there is just a name and a phone number
and address for every single state and territory.
And that is the contact person,
the entry point to the state services in your region.
The other place that has a real national list
that you can search through is on the Vision Aware website.
And it used to be at AFB,
the American Foundation for the Blind,
but it's now at the APH,
American Printing House for the Blind website.
And it's a directory of services.
So you can go in there
and you can search for like low vision services.
You can search for libraries
like the Talking Book Library.
And I would suggest you just go in there
and tell it to tell you about everything
that's in your state and it'll just list out
all the different things and then you can sort through
and get an idea of everything that's available.
So like things like talking books,
even if you have 20/70 vision
and you don't consider yourself necessarily blind,
they do have large print books,
they have the audio books,
and you're eligible for all of that
if you're having difficulty reading,
you don't necessarily have to meet
a certain acuity criteria to be there.
It's just a matter of getting someone
to help you fill out that application
and your eye doctor can do it,
or someone from a rehabilitation center can do it.
So I like to tell people that blindness,
vision impairment, whatever, it's a spectrum disorder.
You know, you might be really high functioning visually,
and yet if you're having difficulty
you're on that spectrum of vision loss.
So think of it that way.
We know that there's people
that are very high functioning visually still driving,
and yet they need the talking book.
I mean, it's a real disconnect,
but that's just the most efficient
and effective way for them to complete the task.
It's not always a visual solution to what you wanna do
even though we might call it
low vision services in other places.
Let me go back to the different professionals
that you're gonna find within these agencies.
And I'm just gonna go through the job titles
and a little brief description
about what they are real quick.
There's the vision rehabilitation therapists,
that's what Steve and I both are.
And vision rehabilitation therapists
help people with activities around their home.
Pretty much anything,
whether it's using a computer,
using low vision devices to access printed material,
cooking safely in the kitchen,
accessing those appliances around the home
that have the little dials and touch pads
and the microwaves and everything
that you have to operate with in your household.
Then we have orientation and mobility specialists,
and these individuals teach people
to travel safely outside the home.
So if you need to cross the street to get your mail,
if you need to learn
how to use the fixed route buses in your community
to get around if you don't feel safe driving anymore,
all of those kinds of things,
they're gonna help you with.
If you think you want a dog guide,
they can help you learn how that process works
and get you the training you need
to be able to enter those programs.
And then there's also low vision therapists.
Not all agencies have these,
but they are specific to the low vision devices
and they work with individuals
to adapt the environment
and make sure that you know
how to use those devices for magnification.
And we also have...
Steve is one of these,
the computer access trainers,
and they teach you specifically
like the really detailed stuff
when it comes to how to use an iPhone or a computer,
because those get into a lot of details
and there's different programs
for doing different things
depending on what device you wanna use.
So those are all the traditional professionals
that you're gonna find in these different agencies.
Some of them have gone to a master's program
and they're certified,
and some of them are not.
Some are simply hired by the organization, trained by them,
and they're what we call agency trained professionals.
So they know a lot of the information.
Some of them are really good and very well trained,
and other ones just isn't quite at the same level.
So you're gonna find a real variety of knowledge
with these professionals in the traditional list
of professionals there.
How would you tell the difference?
And frankly, is it that important
to know the difference?
And if a follow up to that is,
you know sometimes I think that
one of the reasons that a doctor
may or may not make a referral to the social services
is I get the sense that sometimes
a person may feel as though these are just volunteers
or do-gooders, for lack of a better word,
how do I know that this is actually
a professional who's got a master's degree
with a certification, a national certification?
So they typically will have a C
by their initials.
So if it's a vision rehabilitation therapist,
they go by the initials VRT
and it will be a CVRT if they're certified.
And if you're not sure,
you know maybe you can't read their business card,
you can ask them too about their background,
how they learn to do what they're doing.
And I'm sure that they'll be happy to share with you
the training they've received
to be able to do their job.
I think maybe it's just important to let folks
know that there is a national certification
for a lot of these positions
and people do achieve those certifications,
and in other places perhaps they don't.
And it maybe it's not necessary to have that certification,
but it could be a good thing to ask or to know about it.
It's just good to be aware
that not every professional meets the same level.
So if you are somebody who lives
in one state part of the year,
in another state, another part of the year,
you might find that services look very different,
and don't give up if you've had a bad experience one place
and you happen to move to another location,
you might have a completely
different experience with services.
How about the role of an occupational therapist,
which is, that is in the medical model.
How does that fit in?
Because oftentimes I think people
are going to encounter an OT
in some of these agencies or low vision clinics.
They have started fitting into the low vision
picture since 2002 when Medicare and Medicaid
allowed them to start billing for low vision services.
Sometimes you'll even find OTs that are working
with an eye doctor.
Usually it's a low vision clinician.
So a low vision clinician
tends to be an optometrist
that's had some extra coursework
related to low vision devices.
And if you have the opportunity
to have a low vision evaluation,
we really think that that's a great idea
because what they're gonna do
is way beyond your normal medical eye exam.
It usually takes somewhere around an hour,
maybe as much as two hours to meet with them.
They don't dilate your eyes,
they're gonna look in your eyes briefly
and they're gonna do probably a more detailed acuity tests.
So when you're looking at the eye chart,
they're probably gonna have a different chart
and get down to a more detailed level
of what you actually see and don't see.
And then they're gonna show you different magnification aids
and oftentimes they sell the devices
so there's a pretty big push
to buy the items that you see
that are demonstrated to you on that appointment.
And they can be very helpful to you,
but you need to be really careful
about asking some questions.
For instance, could I take this item home
and try it out for a week before I commit to buying it?
Often that's not an option, but sometimes it is.
And it's hard to know how it fits into your environment
when you're only seeing it in the doctor's office.
Coming back to the OTs,
the OTs will work with these low vision doctors
to kind of follow up and help you learn more
about how to use the device.
So that's a pretty good model
when you find both the OT
and the low vision doctor working together,
'cause you know you're gonna get
a lot of training in that situation.
If the low vision doctor is just by themselves,
you are just gonna get that one appointment
and you often don't get a lot of follow up then
from that in your home.
I think one of the things
that has come up in our profession
is you have a specialized professional
called a Certified Vision Rehabilitation Therapist,
and you also have an OT who may or may not have
some specialty with the field.
What is the difference between the two,
can you just give me in general terms?
As it plays out in vision rehabilitation
services, the OT is focused on the person
completing tasks in a visual way.
So whether that's with a magnifier
or electronic magnification or using contrast,
everything is focused on the task using vision.
Where the vision rehabilitation therapist is different
is that they will look at the visual options,
but they'll help you to decide
is it better to use a visual way to complete this task
or a non-visual way.
So an example might be setting the knobs on your stove,
you know how the knobs are
at the back of the stove on most setups.
And so to lean across the stove burners to use a magnifier
to read those styles would be the visual way of doing it,
and yet that's unsafe if the burners are on
and you're trying to find the off position.
So the most efficient and safe way to do it
will probably be to reach over there
and have a tactile mark that you find with your finger
to verify that you're getting the button turned
into the off position.
That's the easiest way I can explain it.
So you would just look at each task
and then decide, is it better to do this
in a visual or a non-visual way?
And you would decide together,
the professional and the client together.
And sometimes the OT is gonna know those non-visual ways
and suggest them, and especially
if they're not safe like the stove.
But yeah, they don't always go,
that's not their first thought,
their main focus is gonna be
to use the vision to do the task.
So this has all been incredible
and probably literally life changing information
for some people who are losing their vision.
There's just a lot to take in here.
So if each of you had to kind of distill this
into a single piece of advice
that you would give someone
who's looking for rehabilitation services
and they're experiencing vision loss,
what would you say to that person?
We'll start with you, Kendra.
So I would say to not give up.
To make sure that you look around
and have people help you,
search online if you can't do that anymore.
Google things like low vision and the name of your town,
or vision rehabilitation services,
there's all kinds of things.
You might even put the word blind in there
just to make sure that you're not missing out
on something that would be helpful to you.
So really research it,
ask your friends, ask your family,
it's one of the best kept secrets out there.
And one more thing I that we didn't talk about is,
if you're a veteran, you definitely should ask
about services at the VA,
because they have awesome services for the veterans
who have vision loss and you don't wanna miss out
because they're really great services
that are available through the VA.
Fantastic. And how about you, Steve?
Stay engaged and remember,
the services you're looking for
might be labeled blindness or low vision.
I just wanna second also what Kendra said about the VA.
The VA offers great services
and you'll find a great number
of vision rehab therapists through the VA.
And one thing that we didn't touch on
is that you'll find a great difference in the fee structure
between social services and the medical model.
Oftentimes with social services,
there's no out of pocket fee
or they're available on a sliding scale.
Excellent. How about some quick
contact information for both of you?
If people either wanna visit a website
or perhaps send an email to either of you to follow up,
where's the best place they can go
to see what you're up to or maybe contact you?
So our main website is blind.msstate.edu,
and we consider our three websites,
which you can link to all of them through that main website.
We consider them to be your source
for blindness information.
That's our new tagline.
So please come check it out,
look at our research projects
and see the plain language summaries that we have.
And we have continuing education courses
mostly for professionals who are in the field,
but anybody's welcome to take them, there's no cost.
Steve, how about you,
where can people find you?
I think the easiest thing to do is just send me an
email, it's stevenk@hadley.edu.
Hadley's a great place to just get started,
click on the discussion groups
and just get involved.
I wanna thank you both
for sharing this information with all of us.
It's incredibly important
and you've done a great job
of kind of making it informative and approachable,
which is really, really important.
Thank you again for joining us,
and for those of you listening,
you'll find all of the resources mentioned here
over in our show notes.
And we appreciate you listening.
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(gentle music)