odp deaf services for provider staff - amazon s3 · odp deaf services for provider staff transcript...

ODP Deaf Services for Provider Staff Transcript 1

Course Number: 018-02-01

ODP Deaf Services for Provider Staff

Transcript Title Slide (music playing) Webcast Tips This webcast includes spoken narration. At the bottom of the viewing pane are the play and pause buttons as well as buttons to go back and forth. There are also buttons to adjust the volume and view the closed captioning. On the left is a table of contents that can be used to navigate to a specific area of the webcast. There are also times when buttons may appear on the screen. They will typically appear at the bottom. The webcast may pause until you click the button. To continue, click the [Continue] button that appears in the lower right hand corner. Certificates of Achievement will be available to Administrative Entity staff, Providers, Supports Coordinators, and SC Supervisors after completing all course requirements. Please view and then save or print your certificate in order to receive credit for this course. For SCs and SC Supervisors, course requirements include successful completion of a pre-test and a post-test. Welcome Hello. Welcome to the course “ODP Deaf Services Overview.” This course is required for all provider staff who are serving waiver participants who are deaf. My name is Patty McCool. I am the Director of the Bureau of Supports for People with Intellectual Disabilities and I’ll be your presenter for the first part of this webcast. Next, you’ll hear from Romy Spitz, an expert on supporting people who have an intellectual disability and are deaf from the state of Maine. Romy will discuss Deaf Culture and the unique needs of people with intellectual disabilities who are deaf. The last part of the presentation will be provided by a representative from the ODP Consulting System who will share information about ODP’s expectation of providers, documenting the signing skills of staff, and contacting the Deaf Services Coordinator. Settlement Overview (no narration) In August 2013, DPW entered into a settlement agreement in the case of Harry M. versus DPW. This case focused on communication access for people who are deaf and served through the Consolidated Waiver. This training is one part of what is required by the settlement agreement. We’re going to spend a little time giving you an overview of the various activities and timelines in the settlement at the beginning of this webcast. If you’d like to review the entire agreement or a summary of the settlement, you can access them using the link on this slide.



Transcript Some of the requirements that ODP has implemented as a result of the settlement include the following.

• New data fields have been created in HCSIS to identify hearing status, primary language, and communication skills. More information about these fields is included later in this presentation and can also be found through HCSIS Job Aids and Captivate trainings on the Learning Management System or LMS.

• A Statewide Deaf Services Coordinator has been hired. You’ll hear more about when and how to contact her in a little bit.

• ODP has worked to identify individuals who are deaf who are served through the Consolidated Waiver or on the Emergency Waiting List and staff who are skilled in supporting people who are deaf.

• ODP is also required to provide interpreters and communication assistance during meetings.

Individuals who are deaf will be provided options to choose Supports Coordinators and Providers who are skilled in working with people who are deaf. Individuals will also be supported to live with other individuals who are deaf if they’d like to do this. As of April 2014, ODP is refining the process for providers to use when requesting additional funds relating to increased staff costs due to employing and retaining staff who are skilled in sign language. In this case, the term sign language includes American Sign Language, Sign Language from other countries, such as Spanish Sign Language; Signed Exact English; and a mixture of ASL and signed English; tactile sign; and visual-gestural communication. ODP is also required to establish a standardized communication assessment process for use with all individuals who are deaf and who are served through Pennsylvania’s Consolidated Waiver. The assessment is currently being piloted with a small group of volunteers. After the assessment pilot is completed and the assessment tools and procedures are finalized, ODP will be completing a communication assessment of all individuals who are deaf and served through the Consolidated Waiver. The communication assessor will make recommendations including whether a separate assistive technology evaluation is necessary. Pennsylvania’s Initiative on Assistive Technology, part of the Institute on Disabilities at Temple University, is a good resource for more information on assistive technology. While individuals who are enrolled in the Person/Family Directed Support Waiver are not currently eligible to receive the standardized communication assessment, they may receive an assessment from a speech-language pathologist. There are training requirements in the settlement for Supports Coordinators, Providers, investigators, licensing inspectors, and monitors. The Communication Assessors will also receive training before they complete communication assessments. The settlement specifies what topic will be provided for each audience. The training content includes Deaf Culture, the needs of Waiver participants who are deaf, and the role of the Deaf Services Coordinator.



Transcript As specified in the Harry M. settlement agreement, the topics that will be covered in today’s training are:

• Deaf Culture • Unique needs of Waiver Participants who are deaf • ODP’s expectations of provider staff with respect to the provision of effective

communication • And, when and how to contact the Deaf Services Coordinator.

I’ll now turn the presentation over to Romy Spitz who will talk about Deaf Culture and the unique needs of people with intellectual disabilities who are deaf. Deaf Culture (no narration) Hello, my name is Dr. Romy Spitz and I will be covering information about working with deaf adults with intellectual disability and autism. As Patty McCool said, I am from Maine where I am the consultant on deafness and communication for Maine’s Office of Aging and Disability Services in the Department of Health and Human Services. Within Maine Developmental Services, I am responsible for ensuring that deaf and hard of hearing people with intellectual disabilities and autism receive the services and supports they need to access all department services and contracted programs, including residential services, day habilitation services, and work supports and employment. I’ve been in this position for almost 14 years as well as being a communication assessor for people who use sign language or gestural communication and teaching neurolinguistics, how your brain makes language happen, at the University of Southern Maine. I’m happy that Pennsylvania is creating this webcast, there is a lot to learn. So welcome to the module on working with deaf adults with intellectual disability and autism. This module is intended for direct support professionals, also referred to as DSPs, who will be working with deaf individuals and also for those direct support professionals who will be working with deaf coworkers. The purpose of this module is to build two things. First to build your knowledge of deaf people and deaf people with intellectual disabilities, so you can confidently support individuals who are deaf. And second to build your understanding and respect for different viewpoints on what it means to be deaf, such as approaching deafness from a cultural perspective. And at the same time, the goal of this module is to give you a clear idea of what ODP expects of you as someone who is supporting an individual who is deaf.



Transcript There are two topics covered in this module. First we will talk about the concepts of Deaf Community and Deaf Culture and what those concepts mean, not only for individuals who are deaf with intellectual disability that you support, but also for coworkers who are deaf that you may work with. And we will talk about people who are deaf and have intellectual disability or autism. What are their unique characteristics? How are they different from other persons who are deaf and how are they different from other hearing persons with an intellectual disability? Why do you need special training in order to understand their world and how best to support them? But before we begin, let’s take a minute to talk about People First Language and how it intersects with the topic of deafness. During the portion of this webcast that I’ll be presenting, I may say deaf person rather than a person who is deaf. I may say a hard of hearing person rather than a person with hearing loss or a person who is hard of hearing. I do this because deaf people and many hard of hearing people prefer this way of referring to themselves. They prefer it to the way that those who use “people-first” policies refer to them. Person-first policies emphasize that you should put the person first and the disability or the difference second. For example, saying a person who is deaf. They do this in order to emphasize the person and de-emphasize the disability. The American and International Association of Deaf and Hard of Hearing adults have endorsed using “deaf” or “hard of hearing” first before the person. Why? Because both groups feel that by not de-emphasizing their deafness, by bringing it to the forefront, it emphasizes the importance of the need for effective communication and in some cases, it marks cultural identity. People who are deaf don’t consider deafness to be a disability and, therefore, feel no need to de-emphasize it. It is best to always use People First Language, such as an individual with deafness or a parent with a hearing difference, the first time you meet the individual or family. As part of your conversation with the individual and family, ask them how they would like you to refer to people who are deaf and then use this language moving forward. We recognize that language can be a very individual experience and we need to be respectful of the individual’s preference. So let’s start with a look at the concept of deafness. Take a minute to think; when you hear the words deaf or deafness, what picture do you see in your mind? How do you see the person in your mind’s eye? Is it the picture on the screen? A picture of a person with ears that are broken? Do you see a picture of a person who cannot speak? That is what we would call the medical view of deafness; a viewpoint that looks only at the physical characteristics of the person as broken, disabled, or dysfunctional and seeks to fix the person by curing them of their deafness. And if you don’t know deaf people, that is very much a typical way to view them. There’s nothing wrong with that viewpoint, there is nothing wrong with that picture of deaf people. But that is not the picture that many deaf people have of themselves. And it is not the picture that people who are supporters or allies of deaf people have of them as well.



Transcript As a DSP, you will be an ally; a supporter of deaf adults with intellectual disability. You will need to be able to understand and explain deafness in an entirely different way than you may know now. When you ask deaf people who were born deaf how they think of themselves, you often find that it is more like the picture on this screen. When deaf people see the artwork of the letters “D-E-A-F” spelled out in American Sign Language, they feel pride and a sense of celebration. Deaf is a positive image. They think of themselves as a culture, as a cohesive group of people living within a special community. They think of themselves with a sense of deafhood, a special sense of belonging, the same way as brothers think of themselves as a brotherhood. They see themselves as a Deaf Culture the same way you would see any other ethnic or sociolinguistic culture, such as American Culture or Italian Culture. So let’s begin the discussion with the concept of culture. What does the term “culture” mean? Culture can be defined as the behaviors and beliefs characteristic of a particular social, ethnic, or age group. Cultures can include external features such as distinctive clothing, special foods, traditions or holidays. These are things that we can see and observe and take part in. They can include internal features that we cannot see or take part in, such as a sense of identity, internalized values, or cherished beliefs about how someone should behave. And they can include social features that we may or may not be aware of such as having a distinct language, having greeting customs, artistic expressions, and jokes.



Transcript Deaf Culture, like any other culture, revolves around an identity based on commonalities. What are these commonalities? The first commonality includes communication in American Sign Language or ASL. In Deaf Culture, everyone signs ASL and your skill in that language is valued. They include social protocols such as long introductions when we first meet and extended rituals for goodbyes. In Deaf Culture there is no such thing as a quick “hi, nice to meet you.” Instead, introductions are long and they include a lot of background information. Where did you grow up? Where did you go to school as a child, to college as an adult? Who do you hang out with? Given that information, both people immediately try to find deaf people they may know in each other’s home towns or deaf people that they might have in common. This information is exchanged with the goal of establishing relationships, to establish a common bond of deafhood and a sense of bonded community. When individuals who are deaf and have an intellectual disability meet, they too may try to forge links toward a relationship. Did you go to WPD, Western Pennsylvania School for the Deaf? Did you go to Scranton School for the deaf? Which dorm? Which classroom? Which Teacher? Who did you hang out with? Establishing common friends, common attitudes is very much part of Deaf Culture. You may need to help the person you support, communicate with others so that cultural links can be forged and maintained. And then there is the famous “deaf goodbye.” In Deaf Culture, saying goodbye is a long process. People may start to say goodbye, give hugs and begin to leave, only to come back to tell you one more thing, to ask one more question, find one more person to say goodbye to. It may be 30 minutes to an hour before they actually get out the door. DSPs need to anticipate that extended ritual as part of the person’s culture and provide the extra time. All of these are part of the culture which has a rich history where deaf people rarely had the opportunity to come together for an event. And once the event ended, they might not see each other again for months or even years until the next event. Remember, cultures are a part of our past that we carry with us to the future, and in times past, deaf people couldn’t simply make a phone call to talk to someone, or text them to set up a last minute lunch date. Those features of Deaf Culture are set in history, but continue today as part of the culture. Other commonalities are shared recreational events and social groups where everybody signs, and in the telling of familiar deaf experiences, such as being in the deaf dorm at school, participating in regional challenges such as basketball games. The stories also capture the shared experience of not hearing. And of course, like every other culture, there are jokes or other entertainment that you simply will never quite get unless you are connected to Deaf Culture.



Transcript Let me give you an example of how jokes can tell you a lot about someone’s cultural identity. So here’s joke one: The Motel Joke. A deaf couple checks into a motel and goes to bed early. The wife wakes her husband in the middle of the night complaining of a headache. She asks him to go to the car and get some aspirin from the glove compartment. Groggy with sleep, he struggles to get up, puts on a robe and slippers and leaves his room to go to the car. He finds the aspirin, and with the bottle in his hand he turns toward the motel. But he cannot remember which room is his. After thinking a moment, he returns to the car, places his hand on the horn, holds it down and waits. Very quickly the motel rooms begin to light up…all but one. It’s his deaf wife’s room of course. He locks up his car and heads toward the only room without a light on. So here’s joke two. It’s called the Hot Mamma Joke. A 92 year old man who was hard of hearing went to the doctor to get a physical. A few days later, the doctor saw the man walking down the street with a gorgeous young lady on his arm. A couple of weeks later, the doctor talked to the man and said, “You’re really doing great, aren’t you?” The man replied, “Just doing what you said doctor, get a hot mamma and be cheerful.” The doctor said, “Wait, I didn’t say that. I said you got a heart murmur, be careful.” Now chances are that you found one joke funnier than the other joke and which joke you find funny depends on your culture. If you are from Deaf Culture, joke one is humorous both for its deaf solution to a vexing problem, but also for its dig at those hearing people who were bothered by the honking horn. If you are from hearing culture, which most of you are, the second joke is humorous because the message was “misheard” in a funny way, a fact that would be lost on a deaf person who does not have access to the sounds of words such as heart murmur or hot momma.



Transcript It is important to understand that the heart of Deaf Culture, the defining feature of Deaf Culture, is sign language. In the U.S. and parts of Canada, that culture revolves around American Sign Language or ASL. But Deaf Culture is not isolated as a community. It forms a core within a wider community called the Deaf Community. The Deaf Community includes the core of deaf people who grew up with ASL as a primary language, who have a self-identify as a “Deaf” person and who primarily associates with others who sign ASL, but it also includes signing allies. These allies may be family members who sign, interpreters or other people who sign ASL and deaf people who came to learn about ASL and Deaf Culture later in life. They form a big circle surrounding the core culture. Each ally in the Deaf Community has a place either closer to the core Deaf Culture or farther from the core culture based on a variety of factors, but the biggest factor is how well you sign and whether you are seen as having a “deaf heart.” People closer to the core culture are those who share the same deaf values. Allies who do not sign well enough to converse, but who nevertheless are attached to deafness can also be part of the community, but at a distance. Their lack of fluency in ASL will always leave them in the perimeter of the community. Put another way, any person that knows sign language can be a member of the Deaf Community, but the core culture only belongs to deaf people who have grown up surrounded by ASL, and surrounded by people who share that language plus a common history, story, and values. But what about deaf people who did not grow up at schools for the deaf and who use primarily spoken communication, or use amplification from hearing aids or cochlear implants as tools for understanding speech? Yes they are deaf, but they are not automatically part of the Deaf Community and obviously they are not of Deaf Culture. Remember, Deaf Culture is about Deaf Identity, but it’s really about sign language. So what would a culturally deaf person look like to us? What clues would tell us that someone is culturally deaf? The obvious clue is that someone who is culturally deaf is also audiologically deaf, that is to say they cannot hear. But not all deaf people are from Deaf Culture. Other clues need to be present. Someone who is culturally deaf likely went to a residential school for the deaf or culturally affirming college where ASL is valued, deaf history is valued, and a positive sense of self-identity as deaf is fostered. Deaf people spend hours rehashing their experiences at deaf residential schools and feel an instant bond with anyone who attended a deaf school even if it was in a different country. Someone who is Culturally Deaf uses sign language as their primary language and they identify with others who also use ASL and who also share their values of being deaf as a cherished thing.



Transcript More importantly, people who are culturally deaf see themselves as part of a linguistic minority; someone who uses another language other than English. They do not see themselves as a person who has a disability. They do not wish to be cured of their deafness any more than you would like to be cured of your American-ness or African American-ness or a French person who moves to the U.S. wants to be “cured” of his French language. They define themselves by their language. Being deaf is just part of their culture and self-identity. As we have said, ASL is at the heart of the Deaf Community and it’s important that DSPs supporting a deaf signing individual or working with deaf co-workers have a basic understanding about ASL. Often times we hear statements such as “ASL is English on the hands” or “ASL is not a language, it’s gestures or mime.” Nothing could be farther from the truth. ASL is a true natural language developed spontaneously by deaf people. As research in Nicaragua and other remote locations have shown, if deaf people who lack a formal sign language are left together in a location, a new sign language will emerge over generations. And those sign languages do not have any resemblance to the spoken language of that region. Similarly, ASL emerged from situations where many deaf children and adults were brought together and ASL bears little resemblance to English. Even at the simple level of word ordering, how you put words in order to make a sentence, English and ASL are very different. ASL has its own grammar and syntax, its own rules for making sentences. It is often surprising for people to learn that in many cases, the grammar of ASL is not seen in the signs or the words made by the hands, but on subtle signals of facial expression, eye gaze and mouth movements. Raised eyebrows can indicate a yes/no sentence, they can indicate a topic of a sentence. Furrowed brows can indicate a question such as a where or what question. Subtle lip movements provide adverb information such as some actions were done naturally or normally, hastily or sloppily. The differences between ASL and English exist even at the level of word meanings. In English, we use the word “ran” to mean many things; he ran to the store, she ran for office, they ran a printing press. In ASL, each of those examples would use a different sign, he physically ran by foot to the store or he drove to the store, she competed for office, they operated a printing press. Let’s look at the sign for these. (no narration) (no narration) (no narration) (no narration) ASL is as full and as rich of a language as English or any other language. There is nothing you can say in any other language that you cannot say in ASL. It just happens to be a different language, expressed by the hands, body, and face rather than the mouth and the vocal tract. So, if deaf people have Deaf Culture, how do they refer to the culture of those who do not sign ASL? Well, anyone who is not deaf and not of Deaf Culture is referred to as hearing or being from Hearing Culture. That is all of you listening to this webcast. You are all hearing people from Hearing Culture. Hearing Culture actually refers to a few things, the most obvious is that you hear and speak. As a matter of fact, let’s look at the sign for hearing. (video of the sign for hearing - no sound)



Transcript Notice that it has nothing to do with hearing or the ear at all—it all has to do with the ability to speak. So Hearing Culture means that you are a speech user. But it also captures the wealth of privileges you have as a hearing, speaking person.

What are some of these “hearing privileges?” They are the things that you don’t ever have to think about. Things such as being able to communicate easily with most other people because they too are hearing. Being able to get information easily, being able to hear announcements, environmental noises such as sirens or elevator bells that signal events around you, and of course being able to easily navigate your way through everyday activities such as shopping, banking, and listening to the television without the struggle that deaf people face. Being hearing or of Hearing Culture encompasses all of these things. And it marks a divide between the deaf and the hearing world. This divide is often a theme in Deaf Art. This screen shows artwork by Darleen Hutchins, a deaf artist, which portrays some of the tensions between Deaf Culture and Hearing Culture. Here we see signing hands and seeing eyes united against hearing ears and speaking mouths. Yet both sides are seen seeking a universal way of communicating with each other. A way of communicating that for deaf eyes and hands can only happen through ASL. This picture both highlights the sense of common bond seen in Deaf Culture, but also the sense of separation and tension that deaf people feel as people living within a larger world of Hearing Culture. So what are some of the differences between Deaf and Hearing Culture? The biggest difference you will notice is that Deaf Culture is consensus-driven. It values the group and strives to ensure that all persons in the group are in agreement with any decision or solution to a problem. That is very different from Hearing Culture which is very much focused on the individual and what the individual wants or needs. This difference of consensus seeking versus individuality can be misunderstood by hearing people who may feel that a deaf person simply does not want to “step up” to a leadership position. Or they may feel that the deaf person is unwilling to argue for a particular viewpoint or is unwilling to argue against a decision that they do not agree with. For deaf people with an intellectual disability, it may be seen as being overly agreeable, not being willing to say “No, I want to do something else.” It is important for a DSP to understand that consensus seeking or over-agreeableness is a cultural feature of deaf people. And to sometimes “hold back” on expressing strong opinions for a while in order for the deaf individual or co-worker to get a sense of consensus or non-consensus.



Transcript A second feature that you might notice is that Deaf people have what is called a “flat network.” This means they share information freely with everyone and strive to ensure that everyone is on an equal playing field when it comes to new information. This is very different from Hearing Culture which works off a hierarchical network where information may be shared on a “need to know” basis or be shared with small social networks of friends or co-workers. For deaf people, a flat network is part of the need for consensus. We all need to share information to come to a common decision. And we expect you as a hearing person to be sharing that information freely as well. This can cause misunderstandings because hearing people do not tend to share personal information with co-workers, they do not necessarily feel obligated to tell the deaf person what they heard the program manager say in the hallway. They may not tell a deaf person with intellectual disability what was said about another individual or where another individual is going. For deaf adults with an intellectual disability, this can cause tension because they will want to know why a housemate is angry or what staff are saying in the kitchen or the fact that their friend at work has a physical illness. And sometimes, that information is not ours to share. For hearing co-workers this “deaf” interaction style may be seen as an interaction style that is too personal and too direct.

Even in exchanges of factual information, deaf people tend to state the facts directly with little embellishment or shading for nuance, and they offer more background information and more detail than would be typical for hearing people. They do this so we can reach consensus about the factual information and then move on to a decision or a discussion. But to a hearing ear and a hearing eye, it feels like TMI, too much information. Hearing people approach interactions in an indirect way. We start with the background and come to the point of our request. We are careful not to be too personal in our comments and we don’t generally comment about visually obvious facts such as weight gain, hair style, changes in relationship that are considered fair game in deaf interactions. If a deaf person, with or without intellectual disability, is providing too much personal information or asking “nosy” questions, you need to consider that as part of their culture, not as a negative or challenging behavior. The bottom line is that knowing about cultural differences and being aware of how they impact communication and interaction styles will prevent many miscommunications and allow you to better serve deaf individuals with an intellectual disability. And finally, there is a difference in seemingly small features such as eye gaze and body language. Deaf people expect direct eye gaze during all communications. It’s part of their culture and their visual world. This can cause both confusion and tension, because hearing eyes tend to wander. As a result, the deaf person may feel that you are hiding something. And the hearing person may feel that they are being stared at or feel intimidated. Deaf people are also used to “reading” the body language of others, which means the unconscious signals about our feelings and attitudes that we give off without knowing about it. If they see you are angry, even though you say you are not, they will comment on it, which can make for uncomfortable interactions.



Transcript We have been talking about Deaf Culture and the valued role of American Sign Language in that culture, but that leaves a question. Where do deaf adults with intellectual disability fit in? Are they also of Deaf Culture? Or are they seen as part of Hearing Culture? Or are they left out of a culture altogether? It’s a great question and one that is not quickly or easily answered. Within the general Deaf Culture, deaf adults with intellectual disability who sign and who attended deaf schools and socialize within the Deaf Community are considered part of the culture. But much as we see hearing people with ID live and socialize on the fringes of hearing society, deaf people with ID tend to be on the fringes of Deaf Culture and can be marginalized within that culture. Depending on their ASL skills and functional skills, they may be considered closer to the core Deaf Culture or closer to signing allies. Or they may be on the fringe of that community with those allies that do not sign well enough to converse, but who still have a connection to deafness. Those who do not sign or understand sign are still seen as deaf, but not really as a member of the community. This is the perspective from deaf people without intellectual disability who have a strong sense of who belongs in their culture and community and who does not. However if you talk to deaf people with an intellectual disability, you see a surprisingly different story. They seem to have their own “Deaf ID Culture.” A culture which accepts people from the larger Deaf Culture, but also accepts many others who are willing to communicate with them who would never be considered part of Deaf Culture. And that story is part of the unique characteristics of deaf adults with an intellectual disability.



Transcript Remember we talked about the importance of language and communication to culture. Just like in the larger Deaf Culture, deaf adults with intellectual disabilities cherish communication. They value sharing information, desires, and stories. They value being able to self-determine what happens in their lives through communication. But they also live in a world that is full of challenges to communicating and their Deaf ID Community is also centered around a core within a larger community of friends and allies who can communicate with them. At the center of this community is, of course, those adults who are “like me,” those deaf people I went to school with, attended signing camp with, work with and see often. Those I communicate with the most. That is the heart of the Deaf ID Community. What do they value? A communication rich environment where information is shared freely with others, where new skills can be learned from others, and where happy events and sad events are felt as “family events.” One of the things that makes this community uniquely different from the general Deaf Community and Deaf Culture, is that this sense of belonging, of brotherhood, is not restricted to deaf people, signing people, or people with an intellectual disability. The Culture and Community embraces anyone who communicates visually or even tries to communicate visually. Membership is not restrictive as in the larger deaf culture and community, it’s inclusive. This inclusiveness allows the community to embrace deaf people with ID who come from very different walks of life. Some attended deaf schools, some attended public schools with no signing supports or interpreters, some speak, some use a combination of speech and signs. Some were encouraged to communicate, some were discouraged from communicating. Some have additional issues such as cerebral palsy which limits their motor skills and causes additional barriers to easy communication, or autism which limits their social communication skills. But all are accepted as “deaf like me” in the Deaf ID Community. We will talk more about the unique characteristics of this population next. Unique Needs In this section, we will focus more specifically on people who are both deaf and have an intellectual disability. The combined impact of hearing loss and a cognitive disability presents a unique and complex challenge to service providers. We are talking about people who not only face the same struggle to learn and to function independently that we see for all people with an intellectual disability. But we are also talking about people who have had one of the best tools for learning information and for navigating everyday challenges taken away - their ability to hear and to speak. Our goal in serving deaf people with an intellectual disability is to understand this challenge and to ensure two very important things happen. Number one, that the information they are missing because of their deafness is provided to them in a way that is effective for them and number two, that they can communicate their thoughts and desires not only with us, but to others in their local communities with our support.



Transcript People who are deaf and have an intellectual disability can be very different from each other. They can vary widely in terms of their level of ability and disability. Often they may be classified as being more cognitively disabled than their hearing peers because they don’t speak and they are more difficult to test. This has led to more restrictive environments and fewer opportunities for learning new skills. Older deaf people with intellectual disability may behave in ways that seem very disabled, but this is not necessarily due to their actual cognitive abilities. It is because in the past, they have been considered as less able to be educated. Rather than providing needed therapies and educational supports, they were shunted aside and ignored. But even now, you will see big differences in deaf adults with intellectual disability depending on how they were educated and whether that education fostered communication, learning and independence or instead provided them with little communication and learning…leading to dependence. The educational backgrounds of the deaf adult you support can vary greatly. Some people received Early Intervention supports and adequate education within signing environments that specialize in working with deaf students. These students were able to learn and to reach their potential as adults. Other people have been in and out of specialized program for deaf students or they may have spent most of their school time in special education classrooms with children and teachers who hear and speak. Often there was no one around who signed fluently. These people missed valuable opportunities for learning. They spent their days without access to instruction or information. They became very dependent on teachers and aides and lost valued skills such as problem solving and making informed choices about what they would like to do or not do. These dependency traits have followed them into the world of adult services. Our job is to ensure that we can directly communicate with individuals in order to support learning. This support helps individuals change from being dependent to living productive, independent, and self-determined lives. Age at which a person became deaf is also a factor. Now, we usually think of deafness as something you are born with. But people can become deaf in many different ways. Some were born deaf and never heard a word of English. Some were born hearing or hard of hearing and suddenly became deaf in early childhood, often due to illnesses such as rubella or meningitis. Some were born with some hearing loss and have become progressively deaf as their hearing declines over months or years. And some of the people you will meet have been able to hear for most of their adult life, but have become deaf as they have gotten older. The age at which you become deaf has a big impact on how you communicate both in terms of understanding others and expressing your thoughts and desires. People who were born deaf or became deaf before they entered school may have had early access to sign language in preschool programs. Such Early Intervention programs are common now, but were not common even 10 or 12 years ago. This group will have the best chance at having a full and fluent sign language which they use to both understand others, and to communicate their thoughts to others.



Transcript However, even for those born deaf, many received their first exposure to true accessible communication when they entered school at age 5 or even later when they transferred to a signing program in their teens. Imagine what it would be like to enter school on the first day with no way to know what the teacher is saying or signing? With no way to understand or communicate with the other students? How would you be able to express even simple things, such as your name or that you had to use the bathroom? It must have been a very scary experience. How would you even begin the process of learning? And how much time would be spent on teaching you a first language that could have been spent on other educational pursuits? For this group, although they were born deaf, their late exposure to signing will have an impact on their communication skills. In some cases, when exposure to signing was absent, late, or inconsistent, they have grown up struggling to express their basic desires through single spoken words, such as eat, drink, bathroom, or have developed their own gestural signs and words to communicate. Deaf students with an intellectual disability begin their education at a disadvantage. And that disadvantage continues to follow them into their functional life skills classroom and even into their entry into adult services. They can learn to communicate more effectively if we provide them with the support they need. For those deaf adults who did have hearing in childhood and who learned to speak English before becoming deaf, communication skills can still vary widely. Some people keep their verbal skills and can speak whatever they need to say, but often there are changes in the way their words sound because they cannot hear themselves. And these changes make it difficult for us to understand their speech. They may need to learn to say some words more clearly or learn to supplement their speech with signs and gestures. Some people will lose much of their speech once they can no longer hear themselves speak out loud and may communicate in other ways such as learning signs or gestures or using electronic devices to communicate with hearing people. But even if a deaf person can speak, remember, they are still deaf and can no longer understand you when you speak unless you use additional visual cues.



Transcript So what does a deaf person hear? It depends on their level of hearing loss. Most of the people we are talking about will have a hearing loss in the severe to profound range. Let’s take a look at what that means for the person. In this slide, you see a chart called an audiogram which allows us to see what sounds a person can just barely detect. Remember those hearing tests you had in school? The point of listening to all those beeps is to make an audiogram like this one. On the audiogram you see pictures corresponding to various sounds that most people hear every day. Sounds that are soft are located near the top. Sounds that are loud are located near the bottom. Sounds that have a high pitch are located to the right and those with a low pitch are located to the left. The letters on the page symbolize different sounds used in English and, as you can see, they cluster in the middle of the audiogram. Most people have normal hearing and can hear all the sounds pictured on this chart. The bottom lines on this audiogram indicate the highest level of hearing for one deaf person. She can only hear the sounds BELOW the bottom lines. Take a moment and look at all the sounds that she is missing. Each one of those sounds is information from the world that she will never know about without your assistance. That information includes spoken language, environmental sounds softer than a motorcycle, telephone ringers and telephone conversations, music and television soundtracks. And understand that a big part of your job as a DSP is to “catch her up” on all that missed information. It’s a big job! Hearing aids can help some people hear more sounds by making the sounds louder, but even the best hearing aid cannot make the sounds of speech clearer. Cochlear implants can allow the person to hear sounds by bypassing parts of the hearing system that are broken. Hearing aids and cochlear implants will not be effective for every deaf person and many people will find them bothersome and decide not to wear hearing aids or use their implant. People have the right to choose whether they use hearing aids and cochlear implants or not. If a deaf person needs to see you to get information, what do we do when they are not looking at us? How should we get their attention so that we can communicate with them? The most important thing to remember is that distance communication is not effective communication. When you need to speak to an individual who cannot hear you, come within arms distance. To get their attention, tap lightly on a shoulder, wave a hand to grab their attention, or move to where they can see you. Please don’t tap on them from behind or move too closely within their physical space. They have no way to know who is behind them or what you plan to do. It can be very startling and even scary for someone to approach that closely, that quickly, or from a position where they can’t see you. Remember, if you want to communicate, get their attention first, then communicate.



Transcript It is very important that individuals who are deaf are able to understand what is happening around them. What are people saying? What is happening in the kitchen or in other places that are not immediately visible? What plans are being made? A deaf individual, even one with great hearing aids, cannot hear all the sounds of speech. They may be able to catch a key word here or there if the lighting is good and the person is facing them. They may be able to use contextual cues to what we are talking about, such as the car keys that are in our hand when we ask if they are ready to leave for program. But they can’t hear you well enough to understand sentences. To get a sense of their experience, click on the [Hearing Loss] button on the screen and select hearing loss. Try the different scenes to see what someone with a severe hearing loss hears. For a more light-hearted approach, click on the second button to experience the Flintstones with hearing loss. Notice how little information is left when hearing loss is severe. Once you have viewed these simulations, click [Continue]. The people we are talking about today hear at a level even LOWER than those shown in these simulations. They cannot access information through hearing speech. They rely on visual information. Some of that visual information is informal, such as when we point to what we are talking about. But primarily deaf individuals will rely on more formal communication methods. It is important that you are able to communicate directly to the individual using THEIR best receptive mode or language. They can’t adapt to your speech, you need to adapt to their need for visual modes of communication. And often the best mode for understanding, even for those who can speak, is through the use of good signing skills. People working with deaf individuals with an intellectual disability should be able to sign well enough to convey all the information that an individual is missing. Do not rely on methods such as speech-reading or lip-reading. Deaf adults with intellectual disability seldom have good speech-reading skills. In fact, very few deaf adults without cognitive challenges have the speech-reading skills needed to follow a conversation. That is because less than half of the sounds of English are distinguishable by lip and tongue movements. The words, “I love you” and “olive juice” look the same on the mouth as do the words “daughter” and “tortoise.” Shoot, shoes, juice, chews, June and Jews all look the same on the mouth. Take a moment to take Charlie’s Lip-reading Test by clicking on the [Lip-reading Test] button on the screen. When you are ready to go to the next slide, click [Continue].

If lip-reading is that hard for you, who have no cognitive disability and have heard English all your life, imagine how much more difficult it would be for someone who has never heard English and had cognitive challenges. We can’t rely on speech-reading in order to communicate with individuals.



Transcript It is also important to recognize that individuals who are deaf with autism or who do not have the diagnosis, but show features of autism have a special challenge when it comes to sign language. Sign language is a visual language - you have to look at the person you are communicating with in order to understand what they are saying. People with autism often do not like direct gaze and often do not look at your face for extended periods of time. How can you communicate with them if they won’t look at you? There are some strategies you can try. If the person prefers to look indirectly at you, for example they look more at your ear or your shoulder or your mouth rather than your face and eyes, move your signs to their peripheral vision, move them to the side where they are looking, and don’t look straight at them. Sometimes rather than standing right across from them face-to-face where our eye gaze and direct regard can cause discomfort, we stand next to them or caddy-corner from them and sign. And sometimes, for some people, standing side by side and signing into a mirror can help, or signing from another room using Skype or FaceTime. Please remember, just because they don’t look at you, and just because they don’t respond to your signing, does not mean they are not listening to you or taking in the information. People who are deaf and have an intellectual disability face a real disadvantage in that they cannot overhear conversations. As children, they could not overhear television shows or conversations between mom and dad to learn new information. As adults, they cannot overhear conversations that would warn them of dangers or lead to new experiences. For example, a hearing housemate overhears a staff member talking about a trip to Great Wolf Lodge Waterpark and speaks up “I want to go to Great Wolf Lodge and ride the Hydro Plunge.” Immediately there are conversations about what she thinks would be involved so that an outcome can be made. What steps would need to be added to her Individual Support Plan, or ISP, to accomplish this task? We discuss with her which parts of the park she would like to go to and what parts of the plan she is ready to do now. What parts of the plan does she think she can do with minimal support? What agility skills would she need for some of the obstacle courses or to go across the rope line on the water? Staff might offer that Great Wolf has DVDs that they will send you if you ask, and a plan is made for the roommate to write a letter or call on the telephone. For her deaf housemate, none of this can happen unless the staff are communicating in a way that is visible and accessible to the person. If it is a spoken conversation, the deaf person will never hear of Great Wolf, will never make a plan and problem solve so she can go, and will never experience the growth in independence such events can provide. Deaf adults with an intellectual disability need to rely on others to provide even basic information about the choices available in their daily lives, to know of new opportunities which may arise, to be aware of events that are happening around them and even environmental signals such as the microwave dinging, the fire alarm going off, the fire truck that just went by. To have equal opportunities and equal information, they rely on you.



Transcript When we first meet a new individual, whether deaf or hearing, one of the first questions we ask is “how does he communicate?” meaning how should I communicate so that he understands me and how will he communicate so that I can understand him. And the answer for deaf adults with intellectual disabilities is often, it varies. On the following slides you will see some videos of people with intellectual disability who sign and use gestures to communicate so you can see the differences between them. This is Sandra. She’s deaf. She’s always been deaf and she grew up in isolation from other deaf people. So her whole life she’s had to communicate using a few made up gestures and signs she’s learned from any source that was available. In this video, we’re asking Sandra to show us her sign for light bulb, but Sandra has another idea. She wants to tell us that the light bulb way up there in the ceiling is burned out. What is she doing that tells us that the light bulb is burned out? What gestures is she using? What pointing is she using? And, what facial expressions and body language is she using to tell the other person that the light bulb is burned out? Think about this as you watch this video. (video playing - no narration) In this video, Jamie’s talking about his vacation. See if you can tell what he’s saying. (video playing - no narration) So what did Jamie do on his vacation this year? He went to see some trains at a train museum. It was great because he got to bring his engineer hat and sleep in a tent. Jamie really likes trains. What else did he do? He went to camp. And what happened at camp? Well there was a camp fire. He got to sleep in a tent again. He got to drink root beer. He got to go swimming and he got to eat corn on the cob in front of a fire. If you’d like to watch Jamie’s video again click [Jamie’s Video], otherwise click [Continue]. This is Butch. He grew up at the local school for the deaf. In this video he’s talking about what he does for work everyday. Can you figure out what he does for work? (video playing - no narration) So what does Butch do for work? He works in a nursery where he raises plants and when the plants get really, really big, he sells them and gets money for it. It’s clear from watching Butch talk about his job how much he loves what he does for work and how proud he is that he makes money doing it. If you’d like to watch Butch’s video again click [Butch’s Video], otherwise click [Continue].



Transcript Deaf people with intellectual disability use a variety of communication modes from formal sign language such as ASL, to using spoken words, to using short combinations of signs, to using modified signs that are barely traceable to their ASL origins, to using gestures that they have created or all of these at the same time. Because they deal with many different staff who have varying levels of skill and comfort with these communication modes, they may also may use pictures or a speech output device such as an iPad that can convey messages in spoken English. There is no one way that this group communicates and often you will find that they combine multiple ways of communicating in order to get their message across. As a DSP, you too will need to develop a broader communication toolbox so that you can both understand and communicate effectively with the individual. Sometimes expressive communication is a big barrier. Expressive communication is how they communicate messages to us. When we first meet a deaf adult with an intellectual disability, we quickly form an idea of who this person is and what this person might be able do based on their functional skills, what they can do independently. Yet when a deaf adult first enters our services, we often find that their ability to communicate with others is a lot less sophisticated than we would expect based on their functional skills. Sometimes this is because they did not have exposure to fluently signing peers or because they attended programs where signed communication was not valued. Sometimes the communication limitation is because of missed opportunities or a lack of opportunity for improvement through therapy. Children with speech issues go to a speech therapist, children with signing issues have no therapist. But sometimes the limitation is not in childhood, it only develops once they enter adult services. It is in their environment. We often find situations where the individual had signing skills that flourished in one environment, but declined in another environment.



Transcript Here is one person’s story. Daniel is both a person who is deaf and has intellectual disability with autism. He grew up in a deaf school and used signing to express his thoughts and desires. He graduated that June, and like many individuals with intellectual disability, he was placed in a residential program that was near to his family’s home. There were no fluent signers there, but the staff were told that they would need to learn to sign. By the end of five months, when I visited Daniel, he had stopped signing beyond basic words such as yes, no, bathroom, drink, eat, and television. By the end of eight months, even those signs were disappearing. At his yearly planning meeting, he was reported as being “non-verbal, non-signing” due to autism. At the request of his family, he moved to a residence with two other signing individuals and was provided with a sign language “tutor” to regain his former skills. Now three years later, he is back to communicating and conversing in sign language. He attends a peer support group with other deaf individuals and is considered a leader and a decider. It only took five months to lose his signs, and it took more than two years to get his skills back. This is a common story and it highlights the importance of both a communication-rich and accessible environment, and communication therapy that is relevant to the individual’s way of communicating, in this case signing. More importantly, it highlights a key fact - the limited communication skills we see in deaf adults with intellectual disability are often due to a lack of opportunity, not a lack of ability. When given the opportunity, they often show gains in communication that exceed our expectations. They can show growth that we would never expect to see in a hearing individual. The communication therapy and support you provide may be the first communication therapy and support this person has ever had. Deaf people with an intellectual disability have been waiting for communication their entire lives. The Pennsylvania Office of Developmental Programs is committed to ensuring that the deaf people it serves can have equal access to supports and services. And that commitment begins with you. I’ll now turn over the presentation to a representative from the ODP Consulting System who will discuss ODP’s expectations for you as DSPs. ODP’s Expectations (no narration) The Pennsylvania Office of Developmental Programs is committed to ensuring that the deaf people it serves can have equal access to supports and services. And that commitment begins with you!



Transcript Pennsylvania’s ODP has a number of expectations for DSPs who serve and support people who are both deaf and have an intellectual disability. You are a DSP which means you are a professional. ODP expects you to be able to communicate with the individuals you support directly in the language they use. ODP expects you to be able to converse and meet the communication needs of the people you support. The individual should not have to change their communication to match your communication skills. If you do not sign well enough to meet the needs of the deaf individual who signs, ODP expects you to learn how to sign. If you do not know how to communicate effectively using a combination of speech and signs to individuals who have some ability to follow spoken language, ODP expects you to learn. In addition to simply communicating, ODP expects you to be able to appropriately teach and support deaf individuals. Deaf learners are visual learners and teaching them requires special skills. ODP expects DSPs to be aware of the accommodations or additional services each individual may need in order to make communication accessible to deaf persons. And, ODP expects DSPs to understand their role in providing accommodations such as interpreters or technology during any part of the individual’s day when those accommodations are needed and they are providing the service. ODP expects DSPs to be teachers and models of safety. This includes teaching individuals how to use visual alerts for safety such as flashing fire alarms or doorbell flashers. ODP also expects you to be able to provide the individual with a home environment that promotes participation and reduces isolation through the use of visual environments that are friendly to visual communicators. As a DSP, you are responsible for supporting people to be independent and to achieve their goals. The only way this can happen is if you can communicate directly with individuals using the communication modes that work for them. You have to be able to give them information about everything they may be missing, all those sounds that were talked about earlier, all of the conversations that are happening in their presence. If you don’t provide this information, the individuals cannot understand what is happening around them and they may miss out on important opportunities for self-determination and growth. You will need to teach new concepts and new skills through language. An individual’s ability to learn new skills or take on new job responsibilities should not be limited simply because his staff “doesn’t know how to explain that in sign” and can only teach hands-on or observable activities. This means you will need to be able to communicate directly with the individual using the best communication mode for that person, not the best communication mode for you. An individual's progress should not be impacted or limited by staff’s limited communication skills. But how will you know what the individual’s best and preferred communication modes are?



Transcript In order to ensure that agencies, Supports Coordinators, and DSPs have the information they need to appropriately support deaf individuals with an intellectual disability, ODP is requiring that all deaf individuals in the Consolidated Wavier or in an intent to enroll status for the Consolidated Waiver have a Communication Assessment. The report from this process is where you should go to learn more about how the deaf individuals you support communicate. These assessments are done by professionals who have expertise in signing, lip-reading, and other communication skills used by deaf individuals. Previous reports by speech therapists or psychologists were most likely not done by professionals with expertise in deafness and may not tell the full picture of the individual’s communication strengths and weaknesses. The report from the Communication Assessment will tell you the individual’s strengths in understanding and expressing information and will include information such as whether there is a need for an interpreter or specialized equipment that would be important to have in the home or at a program to aid communication or hearing. It will also tell you areas where communication could be improved. This last recommendation can be very helpful in discussing outcomes for the next year. As we have said, ODP expects that DSPs working with deaf individuals will be able to communicate directly with those they support. Part of that requirement is that DSPs will need to prove that they are capable of easily communicating information to individuals in their preferred modes for understanding and expressing information. If you are working with an individual that communicates using signing as one of his or her modes, you will want to be able to prove that you can sign. Part of the training required for working with deaf adults with an intellectual disability is to take training on Deaf Culture and the unique characteristics of deaf people with an intellectual disability. In short, taking the training you are participating in now. Some individuals both receive information and express information using spoken language. While their staff may not need to prove their ASL skills, their staff will need to still take a training on visual-gestural communication which breaks concepts down to a “gestural level” or a demonstration level, in order to explain concepts, events, and tasks to deaf individuals. After taking training on visual-gestural communication, you will be surprised how well this communication mode works with individuals who can hear, but who do not express themselves using words or who have auditory processing issues and need extra help to understand you. Currently, Pennsylvania does not provide this training statewide yet, but is exploring how to best make this training available to providers. Your provider organization may also have you complete training on how to best communicate with the individuals you are supporting.



Transcript A big part of a DSP’s job responsibilities is to provide effective teaching and support to the individuals they serve in order to help them achieve maximum independence and achieve new goals. Some of the support you provide to a deaf individual are supports for their hearing technology. You may need to learn how to do a daily hearing aid check and how to troubleshoot some simple hearing aid or cochlear implant repairs. You will also need to learn new skills for teaching individuals. When completing your orientation training at your agency, you probably had some information in how to effectively teach adults with intellectual disabilities. Many of those skills will need to be modified or relearned in order to be effective for deaf individuals. Deaf adults have different learning styles and they are visual learners. For example, if they are learning a new skill, they cannot look at the items in front of them and watch your directions at the same time. If they are deaf and signing, there may be no way to immediately stop them if they make a decision that is risky or dangerous. They cannot be doing some task and “hear” your feedback or your cues at the same time. All of these strategies and situations need to be thought out in advance. It can be very tricky. Visual memory for all humans degrades more quickly than auditory memory which means more examples and more trials need to be provided in order for visual learners to be successful in learning tasks and meeting goals. As a DSP, you will be accompanying individuals to meetings. Sometimes those meetings are fun such as a peer support group or a community event such as a party. More often they will be important meetings that impact the individual’s health and well-being, such as medical appointments, ISP meetings, or legal appointments. Under the Americans with Disabilities Act, deaf individuals have the right to equal participation in any meeting that is a public accommodation---any business or service that is open to the public. Deaf people in general use accommodations such as interpreters or technology to make public accommodations accessible to them. The people you support have those same rights, but may be unable to communicate or self-advocate. It is your role as a DSP to ensure that deaf individuals can participate in meetings that are about them or in which they have a personal interest—in which they are stakeholders. You will need to know the basic accommodations needed by the individual and the situations in which your agency needs to ensure accommodations are secured versus those situations where your job is to communicate to others that an accommodation is needed to be arranged for. For example, ISP meetings are the responsibility of the person’s team and therefore Supports Coordination Organizations pay for interpreters at ISP meetings. Medical appointments are the responsibility of the doctor, nurse, dentist, or medical provider, not the agency. But, the doctor may not know that the person needs an interpreter unless the person making the appointment communicates that an interpreter needs to be provided. Understand that meetings with deaf individuals will take longer, sometimes two or three times longer as we need to ensure that communication is as effective as possible. Be sure to schedule extra time so that you can support the person without either of you feeling rushed. Deaf individuals can feel that they are already behind in knowledge and being rushed creates barriers that we don’t need.



Transcript Accommodations are changes, modifications or additions to a service that allow a person to participate more fully. For example, people who cannot hear and who sign, the most frequent accommodation is the addition of a sign language interpreter. Supports Coordinators and Program Specialists will be responsible for ensuring that DSPs know what accommodations are needed for each individual. It is helpful if the agency has a form in the person’s file that states when an accommodation is needed and what that accommodation would look like—what changes or additions are needed. For example, at ISP meetings, does the individual need a visual agenda in order to follow along at the meeting? Do they need visual reminders such as picture supports to guide them or remind them about what they wish to say? Does the individual need a special “hearing system” such as a digital or FM system for helping them hear at the meeting or will their assistive technology be needed to help them communicate? All of these needs should be written down and made easily accessible to staff so that accommodations happen easily and effectively. Often deaf individuals will need an interpreter in order to participate in a meeting or an event. The accommodations form may state: Needs interpreter. But what kind of interpreter is needed? Sometimes the person can use a standard ASL interpreter. But sometimes, individuals who have limited signing skills do much better if they have a special interpreter called a Deaf or Relay Interpreter added to the regular interpreter. A Deaf Interpreter is someone who is deaf and has special training in going between sign language and visual-gestural communication in order to match the understanding and expressive skills of someone with limited signing. Deaf Interpreters can take complex concepts such as person-centered planning and explain that to an individual in a way that they can understand. They can coax more information out of an individual who answers with one or two signs in order to figure out the complete message the individual wanted to say. Deaf Interpreters can be very helpful in ensuring that individuals can both understand and express to the best of their ability. Learn what kinds of interpreters the individuals you support need and how you can access a Deaf Interpreter if needed. It is often helpful to make note of interpreters who have worked well with the individual and then use the same interpreters for each meeting that an individual has, if possible. Each individual’s signs are a little different. Each individual’s communication strategies, greeting rituals, and comfort level with direct questions is a little different. The interpreter has to learn those signs and the individual’s specific way of communicating. And, individuals tend to only communicate easily and fully when they have built a comfort level with and trust in the interpreter or other communicator. The interpreter and the individual have to build a communication relationship, and that takes time. That is why it is important to find the right interpreters and to use them consistently with the individual rather than use a new interpreter. A new interpreter will be starting from scratch in that relationship building process. And, interpreters do best when they are prepared. Make sure information for the meeting is provided to the interpreter at least a week before the meeting date. If you are worried about confidentially, certified interpreters abide by a code of ethics and are required to maintain confidentiality. As DSPs, you will know more about the individual’s special signs, their special topics that they like to talk about than anyone else. DSPs and their information are a very valuable part of the communication process even when interpreters are present.



Transcript The following are some guidelines that will make working with interpreters happen more smoothly. Understand that most people are uncomfortable the first few times they work with interpreters. The process is new and different. The interpreter and the other party are communicating in a language you cannot understand. There can be long pauses where you will not know what is happening. There will also be times when miscommunications occur and clarification needs to happen. As a DSP, you will sometimes need to help other people know how to communicate with the people you support through an interpreter. It isn’t easy for everyone to do. Sometimes people forget that the conversation is really between the deaf person and the hearing person and that the interpreter is just there as a bridge so that the two people can understand each other. Part of your role is to help the doctor or the Supports Coordinator or other people understand this. Remind them that the most important tip is to remember to speak to the individual, not to you and not to the interpreter. The doctor will hear the voice of the interpreter and will tend to respond to the person who has that voice. This leaves the individual out of the communication loop and it is not respectful. Be tactful but clear in reminding others to “talk directly to John” or help John advocate for himself by asking “John, what do you think. Can you answer the doctor’s question? The interpreter will help you and so will I.” You may also need to remind other people that the words the interpreter is saying are not their words, they are the individual’s words. For example, when the interpreter says, “I have my blood sugar book.” They don’t literally mean they brought the book, they mean the signing person said “I brought the book.” Again, remind others that the interpreter is just a bridge so they can hear the deaf individual’s voice. Remind yourself and others that it takes longer for communication through an interpreter and give the individual more time to think about what information was just signed. You will need to remind yourself and others to keep messages short and clear so that the individual can understand the interpreter when she signs what you have said. Always check back with the interpreter to make sure that the pace of the discussion is appropriate for the individual’s attention span and understanding. We all need to speak slower when we use an interpreter and we need to be patient when the interpreter is trying to clarify what we said or what the individual signed. That means you have a good interpreter who is working hard to make sure that everyone is understanding. A bad interpreter never checks to make sure that the individuals understand hearing people; it takes a long time and it is hard work. And it is important that you also check for understanding along the way. The worst time to check for whether the individual understood the information is right before you leave!



Transcript You have a special role when an interpreter is being used. An interpreter is trained to go between ASL and English in order to help people communicate. The interpreter will not know all the special signs that the individual you support has to talk about specific people or events. But you have that knowledge. The interpreter won’t know that when the person signs “gorilla” that they are talking about the Walmart the next town over that has the huge movie section with the animated King Kong figure in front of it and that she wants to go to the “gorilla” to get a movie. But you will know that. DSPs have a communication-based relationship with the people they support and they have a responsibility to use that relationship and that knowledge in order to team with the interpreters. A good interpreter will be appreciative of a DSP willing to be a member of the communication team. Remember that the goal that both of you share is that the individual can understand and express what he wishes to express. You are an important part of that communication team. You are the key to the effective communication in meetings even if an interpreter is there. ODP expects all agencies to ensure that homes and programs provide safe environments for all individuals. Sometimes this can pose a challenge when the individual is deaf. Deaf individuals cannot hear most environmental alerts such as fire and CO2 alarms especially when the individual is asleep. They are likely to miss sounds such as doorbells, telephone ringers, and knocks on their door. There is special equipment that can be installed to make sure that deaf individuals are alerted to each of these sounds. There is a link to resources where you launched this webcast that lists appropriate services and resources for various environmental alerts and we encourage you to utilize this list. If you have questions about which resources would fit best with the individual you support, your agency can contact the ODP Deaf Services Coordinator. One important alarm, the fire alarm, may require you to know a little more specific information about the individuals’ hearing loss. Those people with profound high frequency losses will not be able to hear the fire alarm for the deaf because while the sound it emits is very loud at 90 decibels, it is also a very high frequency tone. There are alarms that emit low frequency sound and those should be sought out as some individuals may not rouse to the flashing signal of the fire alarm during the day or if they are heavy sleepers at night. You might wonder what the purpose of a door knock alert is. After all, individuals live in homes where people go in and out all the time, right? But imagine the world from their perspective. Imagine yourself in the bathroom or in your bedroom dressing in the morning. How would you feel about a person, even a trusted staff member, simply popping in without permission? That is the situation that many of your individuals who are deaf have been living with for years. Why not ensure that they know when someone will be entering private spaces so they are not startled or feel embarrassed or spied upon? A simple device such as a door knock alert or a simple doorbell device placed on the other side of the door allows individuals the same sense of privacy and security that we would want for ourselves.



Transcript There is more to a home than safety. Deaf people are visual people and visual communicators. We need to make sure that our residential programs help promote visual communication and allow deaf people to learn information first hand from seeing and learning from peers, staff, and the world around them. To help make a home a visual place, think about where people need to see. Kitchen tables or tables in gathering places should be round or oblong in order for participants to see each other to communicate. When arranging lounging chairs in the living room or television room, put chairs in a semi-circle so that people can see each other yet still see the television easily. Use open floor plans to prevent corners and walls from blocking communication and preventing individuals seeing what others are doing in common or shared living space. Being able to see promotes peer to peer learning of skills. Being able to see others and being informed about events in the home reduces the amount of time and energy staff need to expend in providing information to deaf house members. Providing a visual home also means installing or using equipment that ensures that deaf house members have access to telephones and to television. Visual people, whether signing or signing plus speaking, need visual forms of telephones. For most people that will be a videophone, a web-based or internet face-to-face communication system that allows two parties to see each other. Some videophones are used alone with no sound, but sometimes they are combined with an audio system that allows them to either speak or hear the other party. A visual environment also means ensuring the television is large enough to show large captions or show signers and signing in videos or movies that is sufficiently large to be clearly seen, especially by older eyes or those that tend not to wear their glasses. And, someone needs to know how to turn those captions on! Even if you do not work for a residential service provider, these concepts are still important. All provider staff should think about how the environment can be modified to best support the individual and his or her communication needs. Most importantly, ODP expects that your agency will develop a communication policy for each service location where an individual who is deaf receives services which clearly states how communication will happen. This policy should include the expectations for current staff, as well as expectations for new staff, how new staff will learn about the individual’s communication style, and how to effectively communicate with the individual. Ultimately, the policy should require that all staff sign at all times in the individuals’ presence so that the individual’s right to equal access to information is protected. Less clearly stated policies, such as staff will use sign or use the language of the individual, results in homes where communication is less effective. It is not sufficient to have staff typically communicate with speech when it is inaccessible to the residents and just throw a few signs in. This is not the kind of policy that ODP expects or accepts. And once developed, ODP expects you as a DSP to follow that communication policy and expects agencies to provide the oversight necessary to ensure that this policy is followed by all staff on all shifts. The requirements for safe homes and visual homes are not limited to residences. They must also be implemented in day services and workplaces where individuals who are deaf participate. Contacting the DSC (no narration)



Transcript At this point in the presentation, we’d like to introduce you to Maureen Veety, the Deaf Services Coordinator, or DSC, for ODP. As part of the Harry M. settlement agreement, ODP hired Maureen to provide a specific set of roles and responsibilities related to supporting people who are deaf and the SCs, providers, and others who support them. Maureen has been in this role since February 3, 2014. Next, you will see Maureen introducing herself, giving her name and her title as Deaf Services Coordinator, using American Sign Language. If you’d like to read along while Maureen signs, the English translation will be in the notes pane on the right side of your screen. (video playing – no narration) Before becoming the Deaf Services Coordinator, Maureen worked for both the Bureau of Human Services Licensing and ODP as the licensing administrator for the Northeast Region. Before her time with DPW, she worked as a social worker at the Scranton School for the Deaf for 20 years. The Deaf Services Coordinator’s focus is on supporting Harry M. class members – those individuals who are deaf and in the Consolidated Waiver. She is also available as a resource for all individuals who are deaf and supported by the ID system. As a Direct Support Professional, you will not need to contact the Deaf Services Coordinator to assist in your day-to-day duties. The Deaf Services Coordinator should be seen as a resource for information. The DSC could provide the information about Supports Coordinators and Providers who have specialized skills to work with someone who is deaf and provide resources for assistive technology. If you find that someone you provide services for is not receiving needed communication assistance or their health and safety may be in danger, you can always call the ODP Customer Service Line. The Customer Service Line is a toll free number and allows you to report issues anonymously. The number for the Customer Service Line is on the slide. Here is the contact information for Maureen. Please note, Maureen is hard of hearing and, therefore, has difficulty hearing voicemail messages clearly. It is best to contact Maureen by email if possible. If you call her and are not able to get in touch with her directly by phone, please send her an email with a short description of your concern and your contact information so that she can make sure to get back to you. This webcast has been developed and produced by the Office of Developmental Programs Consulting System on behalf of the Pennsylvania Department of Public Welfare, Office of Developmental Programs.

odp deaf services for provider staff - amazon s3 · odp deaf services for provider staff transcript...

Documents