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Erica Rich: Thank you for joining us on this recorded

webinar, Considerations for Victims with Cognitive and Communication Disabilities.

The trauma caused by sexual violence can often make it difficult for survivors to express

their thoughts, feelings and needs. When a survivor of sexual violence has a communication

disability, whether it was a preexisting condition or was caused by the trauma itself, accessing

support can be even more challenging. People with communication disabilities generally

have their own unique ways of relaying messages to othersa different language of sortsbut

often times there is a disconnect between their manner of communication and that of

the people who can provide them support. This can leave victims feeling frustrated or hopeless,

in addition to the feelings of fear and shame that sexual violence often brings.

You can play a vital role in supporting all survivors, especially those with communication

disabilities, by learning to adapt more easily to different styles of communication. This

recorded webinar will help you identify some of the ways in which people with communication

disabilities may relay messages to you, both verbally and non-verbally, and will highlight

some techniques and technologies that can help bridge the language gap. To help us with

this topic is Dr. Scott Modell. Scott, I'll allow you to introduce yourself and take it

from here.

Scott Modell: Great, thank you. My name is Scott Modell.

I'm currently serving as the Deputy Commissioner for the Department of Children's Services

for the state of Tennessee. Previous to this position I served as Deputy Commissioner for

the Department of Intellectual and Developmental Disabilities in the state of Tennessee and

prior to that I was a university professor in California for about fifteen years and

I also directed our university's Autism Center for Excellence. So it's using those lenses

that I'm going to share with you some information regarding considerations for victims with

cognitive and communication disabilities.

Scott Modell: I think it's helpful to give a scope of the

problem that exists out there for folks with disabilities, and if we look at some of the

data and some of the national data that we have, the average victimization rates in 2011

for people with disabilities is more than double the rate for people without disabilities.

Serious violent victimization was more than triple the rate, and for females with disabilities

the rate was doubleI'm sorry, for males with disabilities the rate was double and

for females with disabilities the rate was triple the victimization, so think about that.

Double the victimization rate for males, triple the victimization rate for females with disabilities

compared to their counterparts without disabilities.

Scott Modell: We know that individuals with disabilities

are uniquely susceptible to sexual assault. There's some data there that suggests sexual

victimization rates are anywhere up to ten times as high, and we also know from researchand

I can tell you anecdotally from my clinical experienceis that offenders specifically

seek victims with disabilities especially those who have poor communication. So we have

research and we have practice that tells us that folks who don't speak or don't speak

well are good victims. They're perceived as good victims by perpetrators. If you can't

report a crime, it makes you a much more viable victim to some of the offenders that are out

there.

Scott Modell: So if we look at communication, and what does

that mean when somebody has difficulty communicating, I think it's helpful to observe communication

in the context of what is our overall verbal skills as humans. And another way of htinkin

of that is one's verbal repertoire. So there's four basic types of communication in one's

verbal repertoire. We have expressive vocal verbal, and that's commonly referred to as

speaking (what I'm doing right now). And if you're understanding what I'm saying, you

would demonstrate receptive vocal verbal behavior. It's understanding what's being said to you

vocally. For example, if I was to say "could you pass me your pen on the table" and you

picked up your pen and handed it to me, it's possible that we would say that you have receptive

vocal verbal behavior because you responded to my expressive vocal verbal command. Now

I say it's possible that you have receptive vocal verbal because if I asked you for your

pen while I was looking at it and pointing at it, we may not be able to distinguish whether

you understood the words, or you were responding to my expressive non vocal verbal behavior.

So what's expressive non-vocal verbal behavior? Well, it's still called verbal behavior because

you're communicating, but we do this through gestures, facial expressions, body postures.

In fact we communicate a whole lot using non-vocal verbal behavior. So if I was to point at the

pen on the desk and sort of nod my head and smile, and you picked it up and handed it

to me, at the very least we would know that you had receptive non-vocal verbal behavior,

that in otherwise you understood my expressive non-vocal verbal gesture or facial expression

or body language, in this case pointing at the pen. So the example I gave earlier, if

I ask for the pen while I'm pointing at it and looking at it, and you hand it to me,

I don't know whether you were just responding to me pointing at the pen, or you were responding

to me asking you to see your pen, or both. So if I really wanted to distinguish whether

you had receptive vocal verbal behavior, I'd have to ask you for the pen without looking

at it or pointing at it, and you should practice doing that with someone because it's actually

really hard to do if you're asking somebody for something that's sort of in front of you,

it's really hard not to look and/or point at it. But if you really wanted to distinguish

if somebody understands what you're saying, you need to do it in a, just in an expressive

vocal verbal way and not use non-verbal behavior and then you'll know that they understood

what you were asking.

Often times, we'll hear folks use the term "oh he's non-verbal" or "she's non-verbal"

and what we typically mean when we say that in sort of the general language is that the

person doesn't speak. Well to be truly non-verbal, you would have to not have any of these four

types of communication. In other words, you wouldn't be able to speak, you wouldn't make

any gestures or facial expressions or at least those facial expressions and gestures would

be what we call non-contingent. In other words, if I asked you a question and let's say you

grimace and then I ask you another question and you smile, then I ask you another question

and you smile again, and let's say I ask you another question and you grimace based on

the question I'm asking, we might suggest that you are what's called contingently responding.

So that's possible that you in that case would have receptive vocal verbal behavior, even

though you weren't able to speak you're understand what I'm saying potentially. But somebody

who's truly non-verbal doesn't respond to gestures, doesn't respond to physical prompting,

and you really don't know what their receptive ability is. And a couple things with this:

one is, I have worked with probably thousands of children and adults with disabilities and

I've only come across this a handful of times, so very few people in the disability community

are truly non-verbal meaning they have no verbal repertoire whatsoever. So it's important

not to assume that just because somebody doesn't speak that they don't have any verbal repertoire.

And this always makes me think of the book, The Diving Bell and the Butterfly, by Jean-Dominique

Bauby. And I tell this story a lot when I'm pr-he was French- and I think he was very

wealthy and I may be getting some of this story off a little bit but the gist of it

is the same. So he's heading to pick up his kids, I think he has a driver, and he's feeling

really faint and next thing he knows he wakes up he's in a hospital and he can't move. He

has what's called locked-in syndrome. And locked-in syndrome is you can't move any parts

of your body but you have full thought, so he describes himself as being weighed down

by a diving bell but his brain is like a butterfly, he can go anywhere, and you know, he can see

but people are coming in the room and are treating him like he's in somewhat of a vegetative

state. And a nurse realizes at some point in that he's blinking contingently. So what

she does is she sets up this French alphabetone blink is the most common letter in the French

alphabet, two blinks is the next most common letter, and he blinked this whole book letter

by letter. Very, very powerful. So it's important that we try to understand one's full repertoire

of communication before we write somebody off as saying they're non-verbal.

Scott Modell: And often times we'll also use the word function,

like "he's low functioning" or "high functioning", and that word's really, really problematic

because it's not very descriptive at all. In fact, by labeling somebody high or low

functioning doesn't really tell you anything. It's like when we say, like a child with an

intellectual disabilityor an adult, let's say an adult with an intellectual disability

and you say "oh they're functioning at a 5-year old level." What really does that mean? It's

not descriptive at all in fact it's somewhat made-up, because I know some 5-year olds that

I would trust to hold power tools and I know some 5-year olds that I wouldn't trust to

hold a piece of paper. So 'functioning like a 5-year old' is somewhat of a nebulous term.

It's really better to use more descriptors, like level of independence, support needs,

one's skill sets. Really describe what they're able to do as opposed to saying high or low

functioning. And here's the thing: someone who we say, for example, (those of you who

work with investigators or supervisors) someone who writes a report and says "the house was

filthy", they come back and then the reporter says the house was filthy, good supervisors

and good investigators would get frustrated because what's filthy? You can't observe filthy.

Filthy means different things to different people. You would want them to write in the

report, "the sink was filled with dishes, there was garbage on the floor, there were

ashtrays filled with cigarettes." That's much more descriptive. Same thing here, when we

label somebody as low functioning, it really doesn't tell us much. It's such a broad term.

So it's much better to use descriptors like are they independent, what are their support

needs, and describe their skillsets specifically.

Another thing to consider is, we have this bias here in the US, and the work I've done

in other countries it exists there too, we have this bias that if you speak well we think

you're intelligent. And if you don't speak well, we think that you have an intellectual

disability. In fact, we also do it by the way somebody looks. If we see somebody who's

drooling, maybe they have cerebral palsy and they have some cranial facial anomalies and

they can't hold saliva in their mouth, we assume somebody's drooling they're not speaking

they're moaning they must have an intellectual disability, and we really need to sort of

pledge not to do that. In fact, it would be best that we assumed normal intelligence until

you had multiple data points to tell you something different. And it reminds me of the story

of this young man Bert that I worked with, and he came to a program I was working, and

he was 19. They said he was in a car accident when he was 15 and everybody in the car died

but him, it was one of those kinds of accidents. And I remember my first thought of Bert when

I saw him and he had a patch over one eye and he had a blank stare in the other eye

and was drooling a little bit, and you know I was working on my degree in special education,

my graduate degree, and I remember thinking "God what am I going to do with this kid",

and I don't' think the word vegetable came to mind but it was something like that, like

"God what am I going to do with this kid" and after a while he starts communicating

with me, he has a communication device, and he also starts speaking and I realize "God,

I really made some assumptions about this kid, and I wonder how he can do in our program"

and he wasn't there for the program, he was there to help. He actually was a university

student and I made all of these assumptions about him just by the way he looked. You know,

you figure if you're getting your degree in special ed, you really shouldn't be making

these assumptions. So we all do it. So I ask you, those of you who are listening to this,

to sort of pledge to yourself that you won't make assumptions on somebody's intelligence

just based on the way they look or based on the way they speak or if their speech is impaired.

You really need multiple data points to determine whether somebody has an intellectual disability

or not.

And with that comes using what we call person-first terminology. You really want to refer to people

with disabilities as people with disabilities, not disabled people, or handicapped people.

Just use the word person. If you don't know what to call somebody, and let's say somebody

named Michael has some disability and you're not sure how to refer to him, just call him

Michael. So use the word person or use their name, it's better than saying the disabled

person or the autistic child. I always give the example, if you have a relative that has

cancer, you wouldn't say "this is Aunt Betsy she's cancerous," you would say "she has cancer."

Similarly we should say people have autism or have a disability instead of saying they're

autistic or disabled.

Scott Modell: So let's talk a little bit about communication

disorders. What do you do with someone who you're talking to and you can't understand

a word you're saying? In other words you ask them a question and all you hear is (mumbling),

or grunts or no sound at all. One of the things we say is the first thing to do is try to

establish a yes/no communication system. In other words, try to see if they will contingently

respond to yes/no questions. Simple, easy yes/no questions. And they could respond through

eye blinking, they could respond through head nodding, other symbols, hand symbols or gestures.

And that's the key, is to see if they at least can respond yes or no. Sometimes we've done

things with folks where you hold out your hand, you would say "Ok Michael are you hungry?"

and you hold out your right hand and you say "yes" and you hold out your left hand and

you say "no", and some folks will touch one of your hands as an example for yes/no. And

one of the things that is important to do, and in research this is called lie skill validity,

one of the things that's important to do is to determine if they're answering yes/no appropriately

and you want to validate it.

So on the slides here we have a picture of a tree, an ice cream cone, and a dog. And

I might say to, and we'll keep using the case study example here of Michael, "Ok Michael

I just want to make sure that I understand how you're saying yes and how you're staying

no. I'm going to ask you some questions." And I might show the picture of the tree and

say "Ok Michael, this is a picture of a motorcycle." And of course we would expect a no response,

either a vocal verbal response or a non-vocal verbal response. Then I might show the ice

cream cone and say "This is a picture of an ice cream cone" and you would hope that you

would get a yes response. Same thing with the dog. You might say, you know "this is

a picture of a dog" you'd hope to get a yes response or you might show the picture of

the dog and say "this is a picture of a house. Is that correct?" and you'd hope to get a

no response. So however you do it, you want to validate with very easy questions to ensure

that you know how they're saying yes correctly and you know how they're saying no correctly

and that they're what we call contingently responding. In other words responding based

on the questions you're asking, not responding to them as it relates to just assuming that

when they say yes it's accurate and assuming that when they say no its accurate.

Scott Modell: What you also can do if somebody has difficulty

communicating, you can ask them to write their response, or draw it or show you. And the

example I typically give is an example of my brother. My oldest brother has an intellectual

disability and sometimes I have difficulty understanding what he wants. And one year

I asked him, "What do you want for Christmas?" and he said "Assa pa". And I said, "Assa pa?

I'm not sure what assa pa means." And my brother doesn't write, he doesn't draw. I never thought

to say "show me," and that might have helped. So I did the next best thing, I asked my mother

because she understood him a little better, I asked her, "Do you know what Chris is asking

for?" and she didn't understand either and it was a little bit frustrating. And then

I'd say a few months went by and we were walking by a record store (and of course by the term

record store you can tell that this story was a little while ago), my brother Chris

pointed and he says "Assa pa!" And what it was, it was an album of Air Supply. So, I

said "Oh Air Supply, that's what assa pa is" so I got him the record and of course now

I like Air Supply.

Scott Modell: The other thing is, is some folks use other

types of alternative communication and pictures. And we call different types of alternative

communication sometimes "alternative" or "augmentative and alternative communication". And augmentative

and alternative communication consists of, could be manual signs, could be gestures.

Of course American Sign Language is its own communication system, but eye gazing, pantomime-all

those things would fall under there. So as you see on the slide, the technical definition

is any process or device that helps or augments or replaces an individual's method of communication.

Scott Modell: And some examples would be, like a PECS. PECS

stands for Picture Exchange Communication System, it's very commonly used with children

with autism. And these are little icons that they use, typically they're laminated and

have Velcro and they can put things on their icons to try to communicate different things.

Scott Modell: And on the next slide here, we have more of

a dynamic device. So years ago, we used to have devices to help people communicate called

the Dynavox. The Dynavoxes were these big devices, anywhere between three and seven

thousand dollars, and it was sort of a modern-day iPad for folks. One of the things about Dynavoxes,

not a lot of folks used them because they're big, they're somewhat clunky. But iPads, with

some of the apps that they have today, (and this is just a sample app it's called Proloquo,)

to go where you...they're somewhat dynamic where you can really communicate quite a bit

using one of these dynamic devices and they're much less expensive than the Dynavoxes and

they're not seen as, for our younger generation who use them, not seen as sort of some therapeutic

device but sort of somewhat cool because everybody uses them.

Scott Modell: We also have both hand-held and sort of computer

based, or I would say desktop based, text to speech keyboards.

Scott Modell: And when you're communicating with somebody

with one of these who uses augmentative or alternative communication like a communication

device or a text to speech keyboard, don't assume they have intellectual disabilities.

And again, if we go back to the pledge, we would want to pledge that we're not going

to make assumptions about one's overall ability-intellectual ability-just based on the way they speak or

don't speak or the way they look. Augmentative and alternative communication may be one of

several ways which a person communicates. I worked with this young man Brian who would

give you thumbs-up and thumbs-down for yes and no. He also had a text-to-speech handheld

device, and he spoke. It was very effortful for him, and it had to be really quiet, but

he did speak a little bit. So he would speak, he would use gestures, and he would use a

communication device. You typically don't need any special training to communicate with

somebody who's using a device. You want to make sure you speak directly to them. And

this goes with especially somebody who's using sign language and a sign language interpreter.

It's somewhat natural to want to look at the interpreter when you're talking because they're

the one who's talking back to you, but you want to speak and look directly at the person

you're communicating with. So if a person is deaf and is using a sign language interpreter,

you want to look at the person who's deaf. They'll be looking back and forth between

you and the interpreter but you want to pay attention to the person who you're speaking

with, not the assistive device. If possible, try not to interrupt them when they're using

the device, and really when you're communicating with folks, especially those who use augmentative

and alternative communication, be comfortable with silence.

Scott Modell: So, those are just a few things to think about

in terms of communicating with folks with cognitive disabilities, people who have difficulty

communicating especially. Try not to make assumptions about their overall ability. When

describing their overall "functional level" be very descriptive about their skillset,

their independence, their support needs as opposed to just saying high or low functioning.

And increase your experiences where you can communicate with folks with different communication

styles and the easier it gets. Thank you.

Erica Rich: Great! I just have a couple of questions for

you Scott, just to kind of add on to the things I'm thinking about.

Scott Modell: Please, go ahead.

Erica Rich: Well first of all, a lot of our advocates

and victims in the anti-sexual violence movement might have their first contact with people

over the phone. So say someone might call into the hotline or call into the center to

see about getting services. What advice might you have if someone calls into one of thosethe

hotline or somethingand doesn't, maybe is difficult to understand... what specific

steps might the volunteers or advocates be able to take to better communicate with the

people over the phone?

Scott Modell: Great, I think that's a very good question.

One of the things when somebody has difficulty speaking, and this would be, you could do

this in person but it works over the phone, is try to repeat and paraphrase what they

say to ensure that you have it, and don't be afraid to say, "I'm sorry, I didn't understand

you." So that's one, don't be afraid to say, "I'm sorry I didn't understand you could you

repeat it?" Don't be afraid to repeat and/or paraphrase what they say to make sure you

get it, wait for them to confirm. And then if you have questions for them, try to ask,

if possible, questions that require short responses. It will be less effortful for somebody

who has difficulty communicating to respond.

Erica Rich: Great, that's very helpful information. Very

useful. And then finally, you were talking a little bit about different communication

devices and assistive technologies. You may only be able to speak from a, you know, Tennessee

perspective but maybe not. What are some ways that you would suggest that advocates and

other victim service professionals maybe try to help people connect with these different

types of services or technologies, maybe if they don't already have access to them?

Scott Modell: Another great question, and I'll actually

speak from a Sacramento, California perspective, where I spent 15 + years, or about 15 years

sorry. So I'm not sure if it still exists, but it's called SCAT, the Sacramento Center

for Assistive Technology, and I actually think the other day here in Nashville that I passed

by a sort of Nashville Center for Assistive Technology or a Tennessee center, so my suggestion

would be in your local area see if there's any centers for assistive technology that

exist and then if you're having difficulty finding those, try to connect up with any

local universities and their special education departments, especially those folks who have

degrees in communication disorders, they should know where those resources exist.

Erica Rich: That's excellent, thank you so much Scott.

Scott: You're Welcome.

Erica: Just to wrap up, people with communication

disabilities who've experienced sexual violence can definitely be supported, just like any

other survivor, though as we've learned and talked about it's going to take some patience

and maybe a bit of creativity. Their trust in others may have been broken already throughwell,

HAS been broken already through sexual violenceand will need to be re-built and an effective

means of communication will need to be established with them in order to do that. You can show

survivors with different ways of communicating that you believe them and that you want to

offer support by putting in the time and the effort to help understand their thoughts,

feelings and needs. Every small step towards developing a shared understanding will make

a really big difference in their healing process. Thank you again for joining us on this recorded

webinar.

The Description of Considerations for Victims with Cognitive and Communication Disabilities