Top 10 Communication Tips

Communication is one of the most difficult things to be consistently successful at.  So many things play into the formula for a positive outcome. This topic has been debated as far back as biblical times.

I have been an intervenor for over 30 years, and I still have days when I go home and wonder “what the heck am I doing?!” Then, the next day I have an awesome day and think, “OK, I’m not so bad after all!!”  

I’d like to share the top ten communication tips that I have found help me the most. Keep in mind, this is how I rate them; every consumer and situation is unique and the order of importance may change each time. Treat them as guidelines, and “tweak” them as needed.

When I am researching a topic, I like to start out with the true definition of the word; because it provides a solid, credible starting place to base my opinions.

Wikipedia defines communication, as the exchange of thoughts, messages, or information, as by speech, signals, writing, or behavior. It’s derived from the Latin word “communis”, meaning to share.

Communication requires a sender, a message, and a recipient. It is complete once the receiver has understood the message of the sender.

George Bernard Shaw, the Noble Prize winning playwright said, “The single biggest problem with communication is the illusion that it has taken place”. 

Feedback is critical to effective communication between participants.

I love observing people trying to communicate with each other, to see how often they are successful or not, and how long it takes.

I overheard four men talking in a restaurant. It took one of them, four or five times telling another one, he had gone fishing at a particular lake, before the guy “got it”. That amazed me!

I was at a birthday party for a four-year-old.  When it came time to open her many gifts, she was amazing. She was patient, looked and commented on each gift as she opened it, and listened while her mom read her each card. What I found so interesting, was when she was all finished, she picked up two items and went over to her grandma; “Grandma, I got a photo album and a puppy (stuffed) for my birthday”!  Then, off she went to show her friends and play. Those two gifts are what she had retained, because that’s what was most important to her. It made me think about what our clients take away from their experience while with an intervenor.

These communication tips are not things you can learn in a day.  Read them, talk about them, practise them and eventually they will become second nature.

1.Cultural Awareness: 

Google this term and you will see how many ways culture can affect communication success. Two quick examples:

a.  Some cultures have different viewpoints on dogs; they don’t make the distinction between service dogs, pets and strays. Our clients have come across this regarding access to taxis and some small stores.

b. Something as basic as greetings, what’s acceptable?  Eye contact? Physical contact, (shaking hands, hugging)? Male and female differences.

2.Be Assertive (not aggressive): This is a necessary skill to have.

There is a fine line between assertiveness and aggression.  Definitions are helpful when trying to separate the two:

• Assertiveness is based on balance. It requires being forthright about your wants and needs while still considering the rights, needs, and wants of others.  When you are assertive, you ask for what you want but you don’t necessarily get it.

• Aggressive behavior is based on winning. It requires that you do what is in your own best interest, without regard for the rights, needs, feelings or desires of others. When you are aggressive, you take what you want regardless, and you don’t usually ask.

 

3.Rapport:  It’s the bond that brings people together.

• Confidentiality – mean what you say (clients will test you, to make sure they can trust you).

Stephen R. Covey, who wrote “The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change” said “When the trust account is high, communication is easy, instant, and effective.”

Be prepared to earn trust and not expect it.

• Consistency – When a consumer knows what to expect from you, it creates a sense of dependability.

• Names – Whomever your consumer may be dealing with (e.g., restaurants, stores, medical apt etc.), know their names ahead of time, if possible, or find out once you arrive. 

This gives the client power of choice for service; it shows interest, enriches their experience and is the quickest way to establish a connection.

4.Preparation: There are a few things to consider.

• "Elevator Pitch" - an elevator pitch is a brief, persuasive speech that you use to spark interest or explain a concept. It should last no longer than 20 – 30 seconds. It should be interesting, memorable and succinct.

• Initial phone call (for an appointment), to introduce your role, and negotiate time appropriately.

• Strategize - ask the client how they want to approach the situation, or figure out what works best. For example, in a medical appointment, a consumer may be stressed and find it difficult to concentrate on what the doctor is telling them. It may be helpful to discuss (ahead of time), what they want to hear about or address first. Then, they feel in control and you have an environment for a positive outcome.

This is also helpful when helping a consumer structure their intervention time, to make sure their most important requests are completed.

• Environment - lighting, AC, speakers, distractions, what is happening; the client can interject and take control.

• Client's Physical Needs - mobility issues, proximity to facilities, cushions for sitting, stamina, etc.

 

5.Don’t Judge or Assume:   

You don’t know what someone else’s experiences have been and what their triggers might be. 

Exercise patience and observation. (This is a skill that deafblind people need as well). Two examples:

a. Many years ago, before cell phones, a senior client (that has since passed away), who was totally deafblind, was returning from Toronto by Via Train. An intervenor had assisted him to get on the train, and an intervenor was waiting in Ottawa to meet him to help him off. During the trip, he asked the server for a beer. When none came, he asked again. After a longer time, when no beer had appeared, he exclaimed “Where the hell is my beer!” Soon the train stopped and he was escorted off the train and had to walk a bit with assistance, to a waiting area. He was helped into a car, and headed out on a long drive.  To make a very long story short, by the time the intervenor caught up to him he was convinced he had been kicked off the train because he had sworn (the assumption). In reality, the train had broken down mid-trip and alternate transportation had to be arranged for everyone. The reason he had not received his beer, was because it was Election Day, and the poles had not closed!

b. This involves the same client. I received a call after hours (way before Emergency Intervenor Services J), that this client had to go to Emergency and that the ambulance had been called. I was able to get to the client's residence quickly, and could hear yelling down the hall before ever getting to the room. Once there, I observed the ambulance attendants trying to get the client onto the stretcher; he was having none of it! 

I introduced myself, and it appeared the paramedics opinion of me was about a 0 on a scale of 1-10 (the assumption). 

I asked them what they wanted the client to do. Once explained, I excused myself, stepped forward, touched the client (a two-hand manual user) with our tactile sign we had set up to use for emergencies, so he would know it was me. I let him know what he needed to do. He went from a resistant, yelling person to a complacent, cooperative patient. When I looked up, the paramedic’s mouths were still open! My value to them had gone up to a 10 and they were not letting me out of their sight. They helped me into the back of the ambulance with the client, and we were off.

Other good examples on You Tube on assumptions:

Susan Boyle (Britain’s Got Talent First Audition)

Homeless Boy Steals the Talent Show (June13/11)

Best Commercial Ever!

 

6.Plan “B”: Thinking on your feet! The secret, is to be prepared!

• Anticipate what might happen and plan for it.  However, when we think we have done everything right, it can still get mixed up. The following are two examples:

a. I attended a speaking engagement where the speaker was deafblind and was an ASL user. A lot of attention had been made to ensure everything was set up appropriately. However, before things could proceed, the speaker had to request changes to the AC, lighting (the projector in relation to where the interpreter was sitting), where people that needed voice over were sitting, where the interpreter was sitting for the speaker.

b. I was going to be teaching a deafblind person how to use the two-hand manual for the first time, and had put a lot of time into planning it. I had 10 lessons ready. After my first attempt, I realized very quickly that I would have to go back to the drawing board. A lot of the references I was making to explain how to make a letter, were not being understood; the client was unaware of the names for the parts of the hand. 

7.Feedback: - Stop and Check

A client will often understand the words spoken, but not the message behind them (this happens to everyone at one time or another).

Many times, we have seen two or more people talking, but they are having two separate conversations.

When something is going wrong, often word choice can be your friend. Instead of asking “What’s wrong?" or “What’s the problem?", I like to ask “What do you want to do”? or “What do you want me to do?”

Clients often don’t know how to articulate the problem or to express what is bothering them, but they can easily tell you what they want to do right then. It empowers them to take control, or have input to sort out their situation, (it relates closely with listening). I have found that this is a fast way to get back on track and make the best of things.

Suggested video on YouTube:

The Power of Words (a woman changes a blind man’s day)

8.Active Listening: (Charlie Kaufman said “Constantly talking isn’t necessarily communicating.”)

Listening is one of the most important skills you can have.  How well you listen has a major impact on your job effectiveness and on the quality of your relationships with others. Three examples follow:

a. (Listening) A client is flying to the U.S. The client and intervenor had made two trips to the airport prior to the actual departure date, to make sure they had covered everything (we had learned from previous trips) and were comfortable everything was set. On the actual day of departure, the intervenor observed the flight crew discussing whether the deafblind person would be allowed to fly. The intervenor relayed what was being discussed and the client interjected. The result, the client advocated for their rights and boarded the plane. Knowing the names, reading the body language, and timing all played into the successful outcome.

b. (Not listening) I was at a hospital surgery assignment and had done the prep with the client prior to the appointment. We were in the operating theatre and everything had been explained, confirmed etc. and the client was okay. I asked the staff if there was anything else they were going to do that needed to be explained to client – no was the response.  They did not seem concerned where I would be, however I let them know I would be at the payphones (again, before cell phones), checking my messages from the office. I had no sooner gotten into my first message, when I looked up and saw the nurse from the operating room running towards me, motioning for me to come. Long story short, they had decided to do something different than what they had explained to the client and she resisted, sat upright on the table and was yelling for her intervenor. 

I asked them what they had done differently, relayed this to the client, and once the client understood, the process could continue. I can tell you, the staff payed much more attention to where I was going to be the second time around! J

c. (Not listening) I was with a client who was waiting to go in for cataract surgery. The hospital staff had observed me working with the client and I explained my role. We were just outside the surgery theatre waiting for anesthesia. I must have asked at least three times if they had gotten all the information they needed from the client. I explained why I was asking and what the consequences would be. Again, they confirmed they had everything. So, anesthesia was administered, and about one minute later, medical staff came up and wanted some information. When they realized, the client was unable to comply (and their error), they simply turned to the intervenor for the information. I repeated my best “elevator pitch” again of my role. But it was too late, and they had to carry on. 

9.Sketch, Shade, Colour (SSC):  As quickly as you can, give the client a full sense of where they are and what is going on – a sense of the room. Often, this is done in between other things. Break it into steps, and it will make the process smooth and not rushed. I use the analogy of drawing a picture; first you make a sketch, then you shade it in and finally you add the color.

10.Eye Contact:  When you make eye contact with someone, you are telling the person you are important to me. Wherever your eyes are, that's who has control of the conversation. 

"Don't give away your eyes". Keep them on your consumer, rather than on who is speaking to them (other than the occasional glance). This makes it virtually impossible for them to direct comments to the intervenor to "speed things up", or get side tracked. It also makes it very clear to your consumer and the people you are speaking with, who the priority of this interchange is.     

Examples: (Medical appointments, Kiosks in Malls, Clerks, Airports etc.)

 

In closing, I would like to leave you with three last thoughts.

1.  A quick way to self-check: consider if someone were to “capture” your intervention time with a client and post it on YouTube. Would you be proud of the intervenor service you provided? (Never forget people are always watching these unique methods of communication.) 

2. Always have a Plan B (C, D…).

3. Have a sense of humour! 


Maureen O'Brien
I’ve been an Intervenor for over 30 years and I love this job as much now, as the first year I started. My experiences over the years have been primarily in the adventitious area of deafblindness.
The following are 10 observations I’ve made over the years and realize I have assimilated them into my style or approach to Intervening. 
When I meet new Intervenors to the field or have discussions with seasoned Intervenors that have questions for me, I find these ten “tips” are what I most often end up talking about and encourage people to try, for a more positive outcome for all involved. 

Oral Intervening: More Than Just Words

I used to think of myself as an oral interpreter. I submitted invoices for oral interpreting, gave workshops on oral interpreting and if you asked me, I'd say I was an oral interpreter. But I was wrong.

This realization only came gradually. Over the years, particularly with the increase in use in cochlear implants, I found myself providing intervenor services to individuals who did not rely on ASL, but who needed me to articulate in a clear, accessible manner. I didn't feel comfortable calling it oral interpreting because … well, it wasn't just interpreting!

An oral interpreter does not actually use his or her voice. An oral interpreter doesn't give visual or environmental information. An interpreter doesn't adapt the communication to specifically meet the needs of just one individual.

I just didn't know what to call myself. I'd skirt around the issue and describe what I did instead of giving myself a title. Eventually I had to come to terms with this. It became clear.

I am an intervenor, not an interpreter.

It came to me one day when I was watching an interpreter at a meeting. The sign language was excellent, but it felt like something was missing. When the speakers stopped speaking, the interpreter stopped signing.

There was so much else going on that was overlooked. What about the participant who was incessantly texting and unable to answer a question? What about the information on the PowerPoint slide projected on the front wall? What about the looks of confusion as the budget report was tabled?

It was then that I realized what I love most about being an intervenor. It is making the experience come alive. The words may be black and white but the colour is in all the details.


Julie Reid
Julie Reid has worked in the field of deafblindness for over 30 years. Initially with the Summer Intervention Program, she worked with an individual with congenital deafblindness. She then provided intervenor services for individuals with acquired deafblindness through Deaf Blind Services, CNIB where she also designed and implemented the Deaf-blind Literacy Program. She has taught in the Intervenor Program at George Brown College since its inception in 1991 and was one of the founding members of the IOO.

Orientation and Mobility for Persons who are Deafblind

          Orientation and mobility is the study and teaching of skills to facilitate the learning of safe independent travel skills for a person that is blind or visually impaired. Orientation and mobility, known as O&M for short, teaches someone the skills in order for them to live an independent, happy, meaningful, and productive life. A professional that specializes in this field is called an Orientation and Mobility Specialist, and if they are certified in the field, they are a Certified Orientation and Mobility Specialist; identified as COMS for short. The licensing and governing board for this profession is called ACVREP, which stands for Academy of Certification for Vision Rehabilitation and Education Professionals. ACVREP certifies service providers within vision rehabilitation and more specifically certifies Low Vision Therapists (CLVT), Vision Rehabilitation Therapists (CVRT), Assistive Technology Instruction Specialist (CATIS), and Orientation and Mobility Specialists (COMS).

 

            Orientation and mobility instruction teaches a person that is congenitally or adventitiously blind how to navigate both familiar and unfamiliar, and indoor and outdoor environments. Some learn how to travel safely with use of their residual vision, some learn to travel with a white cane, and other advanced travellers have the option to learn to travel with a guide dog. For some, training may look like learning how to navigate from their bedroom to the bathroom, or down the stairs to the kitchen. For others, it is learning how to travel around their neighborhood, using a white cane, and completing street crossings to get to their desired destination. It could also mean learning different routes on public transportation to complete errands or get to their place of employment. Everyone’s journey is uniquely different, and all require not only the physical mobility piece, but also the cognitive capacity to effectively problem solve and process clues and cues within their environment.

 

              What some would describe as a simple task may be a difficult complex skill that is practiced for weeks or even months. O&M requires body awareness and physical movement in space, but also the comprehension of orientation and being able to self-assemble a mental map. It is the understanding of knowing where you are and where you want to go, and constructing a plan of how to get there. Indoor mobility training may include self-protection techniques, negotiating stairs, search patterns, dropped objects, trailing, seating, and auditorium seating to name a few. Outdoor mobility may include learning how to use a white cane, how to identify landmarks, how to process auditory feedback, neighborhood travel, street crossings, and public transit.  Overall, O&M encompasses a vast amount of skills that the average sighted person may not even realize are skills. O&M can be mentally and emotionally draining, but the results can be utterly life changing. 


 
Desrianne McIlwrick
Desrianne McIlwrick at the Canadian Helen Keller Centre is a Certified Orientation and Mobility Specialist that provides O&M services to individuals that have dual sensory loss. She takes prides in her job, enjoys teaching, and enjoys sharing her passion of the field. If you have any questions, concerns, or even have a friend or family member in mind that may benefit from training in this area or more information, feel free to contact her at dmcilwrick@chkc.org

Growing Up with a Sister Who is Deafblind

Growing up with my sister Alecia, I had little idea she was different than anybody else. Oh sure, I knew she was ‘sick’ -- that she had a rare degenerative disease that required many visits to doctors and specialists, and more than one trip to the famous-to-me SickKids Hospital -- but day to day, she was just my little sister, Alecia.

We grew in a very loving, supportive family. My parents had us young -- myself being first born while they were in their teens. My sister Alecia came four years later and then Jessica, eight years after me. My youngest sister, Emily, joined soon after Jessica. It was a full house!

My father was and is a master tradesman in drywall. The family business in our home town of Orillia is still going today in its fourth generation. My mother was a stay-at-home even while a changing economy started to make that difficult. My parents felt it important she be home to raise all of us. I only realized later, as an adult, what an awesome sacrifice that was. All of us kids benefitted from that daily motherly presence, especially Alecia who had special needs.

Despite our family being a blue-collar family, albeit a master in the trade, my parents were no less undaunted to learn as much about my sister’s disease and get her the most advanced medical and social help available to her to ensure her quality of life. They poured all their spare time and efforts into this while we kids grew up together, oblivious to the extraordinary circumstances of Alecia’s disability and my parents’ efforts to give her (and us) the best life possible.

Day to day, growing up with Alecia seemed rather normal to me when compared to other families. Good-natured sibling rivalry was rampant at our home. I remember one time I stubbed my toe and while hopping in pain Alecia howled in laughter at my expense. Don’t worry -- I showed her: As a little blind girl, my sister was a “mapper,” meaning she mapped and remembered where all the furniture was located in the house, to such a degree you would barely believe she had less than 10 per cent of her vision. Using this knowledge to my advantage, I rearranged the furniture in the living room and waited for her to come downstairs, laughing in revenge as she tripped over furniture she didn’t know was there. Antics and pranks like this between us were common and I developed a deep level of protectiveness over my sister; the kind of adolescent older-brother ridiculous logic that I could be mean to my sister, but no one else was allowed to be.

All the while, I didn’t think my sister was that different from anyone else. You see, my sister never really thought herself as blind and deaf, she just was who she was. Her day-to-day joy was unbridled and she was (and still is) a joy to everyone around her. Always with a smile, always willing to help to the maximum of her limited capacity and never complained about her station in life. Indeed, Alecia and her attitude about life stopped us dead in our tracks during the times when we siblings would moan and complain about the trivial things that young kids and teens complain about. Our thoughts being: “You know ... we really don’t have it that bad!

My sister Alecia fights a degenerative disease. It claimed most of her sight and most of her hearing at a young age and started to attack her organs and even her teeth. Through the genius of concerned doctors at SickKids Hospital, they learned to stay the progress of her illness through diet alone. We are thankful we live in Canada, where these resources are available to us to (primarily) help my sister, who is sick, but also for Canada’s medical community to continue world-class research into making lives better. Constant visits to the doctors went unnoticed by us siblings, Alecia was just Alecia, and she always came home with a big smile on her face and unapologetic to continue on living life as if it never occurred that she were that different, being blind and deaf.

This all being said, our acceptance and love for Alecia didn’t mean she lived a normal life like you and I. Having less than 10 per cent vision and hearing growing up made for a very different and modified world for her outside the home. She grew up with modified learning programs to accommodate her level of intake of knowledge due to her condition, and she couldn’t be off the home property without an escort to be her “eyes” and “ears” and she’ll never be able to live fully alone and independently. But to see her walking down the street and meet her, you would never guess! She is so happy and interactive to meet new people and have new experiences.

In a way, our family was lucky to have such a high-functioning, overcome-all-odds-attitude deafblind family member. I know of other deafblind families where their member is not able to be as high functioning as my sister due to their particular illness and struggles that physically limit them. Getting involved with CDBA Ontario was our family’s way of both garnering further support for Alecia (a community of people who are deafblind as well as the auxiliary support CDBA Ontario has to offer) but also for my family to give support back to other families who have a deafblind member.

Through all of this, my sister Alecia continues to be an inspiration today. She never complains, never thinks the world owes her anything and continues to find joy every day in everything. Just yesterday, she learned how to make naan bread after “watching” my father make the Indian flat bread last weekend. Over text, I teased her (she has a GIANT phone with GIANT characters on it) -- “Hey Cow” (my nickname for her -- long story, don’t judge me) -- “I heard you made bread! How you do that if you can’t see the recipe??”  Knowing I’m trying to needle her in an older brother teasing kind of way, she just ignores me and tells me how great it turned out, communicating carefully over text, one character at a time; probably the same way she read the recipe out of the book. She has the patience of Job.

Growing up with Alecia wasn’t a chore in our family, but a blessing. Don’t get me wrong, we had family arguments and sibling fights -- but I wager no more than any other family. What makes Alecia special in this regard is her continuing daily pursuit of happiness, often displaying more enjoyment in the day-to-day things in life than any of us with our full senses. She’s been a constant reminder to me to do the same -- enjoy life and our health and the family we have, to love one another. What a powerful message she’s been teaching me and everyone she meets over the years.  Thank you Alecia!

Sheldon Purkiss
Sheldon Purkiss is a father, artist (graphic and traditional), health and juice nut who loves technology. He is currently running day-to-day operations and support for a Canadian dental software company, LiveDDM. Twitter & Instagram - @ShelAlbert

Just Point Me in the Right Direction

What I’d like to explore in this post is the idea that it is more beneficial for emergent communicators to meaningfully engage in an activity rather than understand the formal language used in the activity. We know that individuals who are congenitally deafblind learn best through experience and so I believe that intervenors should focus more on assisting the consumer to first complete an action successfully. After that goal has been accomplished, the next step could be the acquisition of new vocabulary. I think of it as starting with a solid foundation before adding any fine details. This is even more important if the vocabulary that the intervenor wants to teach leans towards the abstract.

Let me give a specific example of when I believe it is appropriate to choose informal language over formal. John, an emergent communicator is in the kitchen, preparing dinner. The intervenor uses sign language as well as spoken words to request that John retrieve a pan from his cupboard.  However, John does not make his way over and open the cupboard, nor does he make any small movement to suggest that he is thinking about doing so (for example, turning his head to look in the direction of the cupboard). The intervenor waits a short time to allow for some processing time and then repeats the request. There is no response from John once again. Now the intervenor must make a choice on how to proceed. One option is to keep repeating the request until John becomes irritated (most likely because he does not know why the activity has come to a halt) or another option is for the intervenor to walk over and retrieve the pan themselves. Of course, neither of these two options are desirable because John will not learn anything in either situation. Coming up with a third option is where the intervenor can use critical thinking and creativity to come up with an idea that is tailored to John’s specific needs.  

Things to consider:

John’s expressive vocabulary. Have you ever seen him sign ‘pan’ or ‘cupboard’?

John may not know that the spoken words or signs used have any relation to the actual, physical items (e.g. pan, cupboard). If the intervenor does believe that he understands the relation, how would you going about proving it?

Words/signs that represent a physical item that John can touch with his hands, but are extremely large in size. Which part of this physical thing does he come in contact with? Is it always the same part or does it vary?

Whether or not the vocabulary used represents some sort of tangible quality (Some examples include: wet, dry, dirty, clean, heavy)

Is the sign appropriate for the consumer’s conceptual understanding? Examine if these words/signs fall into the categories of concrete, semi-concrete or abstract.

What I’d like to propose that in the situation of John being asked to take a pan from the cupboard, the intervenor put aside all of their sign language knowledge and merely use their index finger to point towards the cupboard door. Also, point to the pan that will be used. This clear direction will be far less demanding on John’s cognitive skills and will be infinitely less confusing.

One last thing I wanted to include is how this pointing may be perceived as less respectful that the use of formal language. I think that it should not be overused and in some situations, I hope that pointing to an object is only a temporary solution. However, this is said with the perspective of typical society in mind. If you think about it from the perspective of the individual who is deafblind, the intervenor using their finger to point at something may not feel anymore directive that the consumer being handed a tangible symbol or the intervenor signing a word to the consumer. The action is still being initiated by the intervenor, and so, all of these ways that the intervenor drives the action should be re-thought. If we spend some time working on strategies that involve the intervenor initiating less, we can find ways for the consumer to increase their independence and have more opportunities to initiate themselves.

(Please note that I’ve chosen to isolate one specific example of gesturing, but of course there are many different ways that gestures can be utilized. This is something that I hope to discuss in future posts, as well as the topic of adapted signs which I have many opinions on, some of which are on opposing sides of the same argument. Thanks for reading!)  


Chelsea MacKinnon
Chelsea currently works as an Intervenor for the Canadian DeafBlind Association Ontario Chapter. She is a 2015 graduate of the George Brown College Intervenor for DeafBlind Persons Program and a member of the IOO and CDBA National Family/Guardian Education Committee and the IOO’s Professional Development Committee. 

Peace of Mind

A new apartment complex in Paris for people who are deafblind is much more than bricks and mortar.

The exciting, cutting edge-project is building community and kinship in addition to providing safe and affordable housing for adults from across Ontario who face the unique challenge of being deafblind.

Parents tell us the new homes are a godsend for their adult children.

New friendships have been forged, closer connections created with the Canadian Deafblind Association Ontario Chapter Resource Centre next door and relationships continue to grow with neighbours and the local community.

Parents Joel and Angela Fice say they’re impressed by strides made by their 19-year-old son Nicholas since he moved to the apartments one year ago. Nicholas, whose deafblindness stems from CHARGE syndrome, previously lived in a group home for people with developmental disabilities.

“Nicholas is more independent and is learning to be his own man,” Angela said.

The apart complex has four three-bedroom units, two two-bedroom units and two singles units, as well as a place for stay for parents visiting from out of town.

Nicholas lives in one of the three-bedroom units with older roommates Jason and Sean, who have become like big brothers to him.

“These three men function independently and collectively in an amazing atmosphere,” Angela said. “The intervention staff under the direction of Cullen Drew is amazing, caring, interactive, sympathetic while always conducting themselves in a professional manner.”

Angela, who has multiple sclerosis, said having a “safe, secure” living environment for Nicholas is something she appreciates as a person who is also living with a disability.

“As parents it has changed our lives … much less stress and we are so happy with CDBA Ontario and their help in giving us our lives back and our peace of mind,” she said

“Every visit I watch how he has grown and become this amazing interactive young man -- I think I cry at least once in happiness,” Angela said.

The social aspect of the apartments has made a big change in his son Steven’s life, dad Scott Richards said. For example, Steven is often invited for potluck dinners at Nicholas’s apartment.

“I can honestly say that Nicholas is Steven’s first friend, and I am very happy that they are so compatible, Scott said.

“This friendship has been fostered by the intervenors in both apartments, and I am so grateful that they have enabled Steven to have a friend. He has had many, many people in his life -- kind providers and intervenors, students hired during his earlier years, medical staff, family members, but Nicholas is the first friend,” Scott added.

Steven previously lived at Lions McInnes House in Brantford. Scott said his son was very happy there, the staff and care were exceptional. It was a difficult decision to make but the move to CDBA benefited Steven on several levels. Going from a three-client apartment to a two-client apartment was a major factor, so was having the Resource Centre next door.

Steven volunteers in the RC Store in the Resource Centre, where he learns job skills like customer service, working a cash register and merchandising. The store sells art, jewelry, bath products and other merchandise made by consumers, who receive 100 per cent of the proceeds.

“I am so proud that Steven has been included as a store volunteer. It's a very emotional thing for me to know that Steven is valued, needed and welcomed as a part of the RC Store,” Scott said.

“A recent Facebook post showing Steven using a paper slitter was just fantastic -- made more so by the jubilant face of his intervenor as Steven operated the slitter independently,” Scott said.

Parents appreciate having the Resource Centre next door, which gives the apartment residents easy access to amenities like its Snoezelen room, music room and a wide variety of activities organized by special project intervenor Kristi Clark.

“Moving to the apartment has given Meaghan a new level of independence that all young adults want,” said her dad Bob Severs.

Meaghan is a person who often needs a quiet environment to help her to settle so living in a single apartment allows her intervenors to have her integrated with other consumers when she can be integrated successfully and to withdraw to her quiet space when needed, Bob said.

“The Resource Centre staff is really pleasant and they relate in a friendly and welcoming way with the clients. Meg enjoys those increased social contacts and activities,” Bob said.

CDBA Ontario spearheaded the $2.9-million project, which was completed in early 2016 with the first residents moving in last February.

The purpose-built apartments have special features to help people who are deafblind, such as high contrast surfaces and variable lighting options.

A study found that adults who are deafblind were paying rents that were becoming increasingly unaffordable. There were also concerns about the safety of their living environments, everything from inadequate lighting to too many stairs.

The safe, affordable housing provides parents with peace of mind that their adult children will be looked after into the future.

“We knew we were on the right track when it came to meeting the residential needs of our deafblind consumers, but the spirit of community that’s evolved has been a pleasant surprise,” said Cathy Proll, CDBA Ontario executive director.

“It’s really starting to feel like family around here,” she added.

Brian Shypula
Brian Shypula is the communications coordinator for CDBA Ontario. Prior to joining the organization in May 2016 he spent more than 20 years as a newspaper reporter and editor at the Stratford Beacon Herald and Brant News.

We are Family… A Practical Look at Providing Intervenor Services in the Family Home Setting

Anyone who has worked as an intervenor knows that the position brings with it A LOT of responsibility. You are tasked with being another human being’s eyes and ears; you are the one that must bring the world to them and ensure they are getting the full experience of everything that is going on around them; you are the one making sure that when you are acting as their intervenor they are experiencing life the way they deserve to. The role of the intervenor is a hefty one and the pressure is immense when you realize that this person is counting on you for all of these things that they could never fully experience on their own.  Intervenor services however do not stop with the consumer. Believe it or not, there can be added pressures that come with the role, specifically when you are working with an individual who is deafblind that lives in a family environment. One thing you can almost be certain of is that each member of the family is going to have a different opinion or feeling on how the individual’s intervenor services should look and they will most likely all have a different understanding of what exactly intervenor services are. This can make the role of the intervenor even more challenging. You not only have to balance what you know of your role as intervenor but also the policies and procedures of your organization as well as the wishes of the family. It can be a real balancing act and for some can be very overwhelming and in some cases stressful. So what is the best way to deal with this added pressure? There are a few things to keep in mind when providing intervenor services in a family home environment.

  1. Families may never have a complete understanding of what intervenor services are and that is OK. The family did not go to school to become an intervenor and they are not going to have the same training as you. You can try to lead by example and teach the family as you work what true intervenor services are but at the end of the day you are the intervenor, not the family and they will most likely have different priorities or ideas for their child or family member. The challenge becomes finding a balance between the priorities of the family and the mission, vision and values of the organization you work for. Your direct supervisor is a great resource to help you find this balance and work with the family towards a common goal of having the individual you support live a rich and meaningful life.
  2. Doing with, not for (the intervenor’s motto) might end when your shift ends, but let’s face it -- the individual you worked with is someone’s child or sibling and the family members will want to do things for them that don’t necessarily gel with how we operate as intervenors. Again, this is OK!  Cut the family some slack and recognize that they are not intervenors; they are loving family members who want the best for their loved one and as such their instincts might throw intervenor techniques out the window. It does not mean that what you work on with the individual does not matter. Keep in mind the relationship between the family member and the deafblind person is different and serves a different purpose. Parents just want to be parents and instinct is to help.
  3. Communication is key! Any family will appreciate you keeping the lines of communication with them open at all times.  They will expect that you will be honest with them about the good, the bad and the ugly. It is just as important to share the many successes you have with the person you support as it is the challenges you are facing. The family may be a great resource to you in working through some of the challenges and helping you to brainstorm ideas that have been successful for them in difficult times. Keep in mind that the family is a valuable member of the team as a whole; they have spent more time with their child than anyone and could have valuable insights that will help you be more successful in the intervenor services you provide to their child. Do not be afraid to ask them questions and seek their support.
  4. Having a solid understanding of whom you report to and take direction from is important. It is a common misconception that because you are working in the home of the family they are your employer and that you take direction from them. This is not always the case. If you are employed by an agency to work in the family home then the agency is considered your employer. In this situation you are expected to follow the policies and procedures of the organization. There may be situations where this needs to be clarified with the family and explained to them what the expectations are of you are as the employee of the organization. It is the responsibility of your supervisor to ensure you have a clear understanding of whom you report to and whom you are expected to take direction from. That being said, you are working in a person’s home and it is only reasonable that they will have house rules that you are asked to follow. It is crucial that you respect and follow these rules. If there is anything you are being asked to do or follow that you have questions about you can address it with your supervisor for clarification. Some intervenors may be employed directly by the family to work in the home. In this case, the family would be your direct supervisor and you would, of course, be expected to follow the directions given by them. Before you start working be sure to know whom you are responsible to report to and do not be afraid to seek clarification if you are unsure.

It is important to keep in mind that working in a family home not only impacts you as the intervenor but also poses various challenges for the family for overcome; they will have to get used to having an intervenor in their home on a daily basis.

“Our family will never be able to have complete privacy,” said one parent of an individual who is deafblind supported by Canadian Deafblind Association Ontario Chapter. “It is important for us to continue a normal life with our normal routines. This means that our son is as much a part of our everyday routine as possible and having an intervenor that can fit in and feel comfortable with the family is very important.”

The parent provided a number of examples of things that are meaningful to them when seeking the right intervenor to work in their home with their child.

“We enjoy social events and outings – being outgoing and outspoken, we respect each other’s privacy, we do not pry into each other’s decisions and choices, and being open and willing to approach each other when unforeseen situations arise.”

When asked to comment on some of the challenges the family may face by having an intervenor in the family home, the parent commented: “Building trust with the family and bonding relationships – this takes a long time.”  The parent added that having a trusting relationship with the Intervenor means “giving them the responsibility to make life choices for our son in our absence which could include health choices that may be life-threatening.”

Of course, every family and their expectations will be different. This is why it is so crucial that you work hard to build the bond with not only the person who is deafblind that you support but the family as well. If you have a clear understanding of their expectations of you, you will better be able to support their child and contribute to the overall family dynamic which makes up your work environment.

We realize that being an intervenor brings great responsibility and having the added dynamic of working in the family home brings even greater pressure. Having the opportunity to work in a family environment can also be an extremely rewarding experience when you recognize how important you are to the family of the person you support and how much they count on you.  If you are lucky enough to have a family welcome you into their home embrace it!  Appreciate that besides your direct supervisor to support you, the family is also there to provide guidance and insight and oftentimes their advice will be invaluable. Once you master the art of providing intervenor services in the family home you will do great things and the feeling of knowing you made a difference in the family’s life even for only a few hours a day will make all of your hard work and dedication worth it!

  Krysta Clark interacts with Andreina, who is one of her consumers, during an event at the CDBA Ontario Resource Centre.

Krysta Clark interacts with Andreina, who is one of her consumers, during an event at the CDBA Ontario Resource Centre.


Krysta Clark
Krysta Clark is a Manager of Intervenor Services with the Canadian Deafblind Association Ontario Chapter and supports a number of individuals who are deafblind and their families across the province of Ontario. Krysta has a Bachelor of Arts in English Literature and Communications as well as a Post Grad Diploma in Workplace Wellness and Health Promotion. Krysta has held positions for various organizations including the Haldimand-Norfolk Health Unit, McMaster University and Rexall Pharmacy where she had the opportunity to act as ghost writer for the vice-president of pharmacy services for a monthly pharmacy publication. Krysta began her career with CDBA Ontario as an Intervenor Services Coordinator in 2015 and has loved developing relationships with consumers supported by the agency. Krysta believes strongly in the intervenor motto “Do with not for” and loves the challenge of helping all individuals who are deafblind live rich and meaningful lives.

What it's Like Using Intervenor Services for the First Time as a Senior

I have no vision remaining due to Autosomal Recessive Retinitis Pigmentosa.  In recent years I have become hard of hearing.  I am 72 years old and lost my husband to renal disease in May 2016.  I now live on my own, but am fortunate in that my extended family is supportive.

My late husband and I had been a pretty effective team for more than thirty five years but I hadn’t realized how dependent on his vision I had gradually become.  As well as dealing with the grief of his loss, I was struggling with the prospect of having to manage and cope with daily living on my own.  Despite the support and assistance of my family, I felt like a very shaky half of a broken whole.  Marta understood all this much better than I did when she responded to my call for help.  As well as very kind, she is very wise.  Her suggestion that I would benefit from the services of intervenors was absolutely right.

As I meet more staff and other consumers at CHKC, my respect for both consumers and staff increases.  Over the many years of gradual vision loss I have become familiar with the impact blindness has on daily lives, the considerable variety of different effects depending on the severity and type of impairment, the impact of additional diseases, and the different effects of age of onset, the age at which different milestones are encountered.  The intellectual understanding of a process, however, does not guarantee emotional acceptance and the capacity to deal with all aspects of the disability.

I am only now beginning to learn about the impact of impaired vision in conjunction with impaired hearing and other physical limitations.  I am in awe of individuals who have had to deal with severe hearing impairment from an early age.  The impact of impaired hearing on the development of language and communication skills is severe.  In contrast, I was in my mid-twenties before my RP was diagnosed and in my sixties before developing hearing problems.  In fact, I was almost legally blind (restricted fields) before even becoming aware that I had a vision problem.

At the time my RP was diagnosed I was the Head Nurse (a now extinct occupation) of a small haematology unit in a now extinct Toronto hospital (Wellesley).  After the RP diagnosis, I went back to school, and was then fortunate to acquire employment (initially through federal grants for the 1981 International Year of the Disabled), developing Management Information and Program Evaluation Systems for the Vocational Rehabilitation Division of Goodwill Industries, Toronto (now also extinct).  I have been blessed with opportunities not always available to many individuals who have disabilities.

As well as my admiration for the courage and determination displayed by individuals with severe hearing impairments, I also admire the breadth and depth of abilities and determination of CHKC staff to mitigate the effects of these impairments.  My first attendance at a Seniors Drop-in was an almost overwhelming experience.  I had no idea there were so many different ways intervenors could facilitate the exchange of information.  As I have come to know more intervenors, as they have accompanied me at meetings, at medical appointments, on shopping trips and on visits to my local library, my understanding of and respect for their skills and their dedication to the needs of consumers has increased.

In the few months in which I have been receiving services, CHKC has giving me the opportunity not only for learning to live independently, but also to learn and expand my personal horizons.  I am learning a great deal from everyone I meet, both staff and other consumers.  I look forward to learning more.

I know I can always call on help from my family and other friends in an emergency, but it is good for my pride and sense of self-worth that because of the services of intervenors, I don’t have to depend completely on family and friends for my daily well-being.  I can ask for help sometimes when needed without becoming a burden.

I am very grateful to CHKC for everyone’s understanding, kindness and compassion.  One of the new goals I have set for myself is to find the best ways to contribute to the many good things that happen at both 210 Empress and 422 Willowdale (hopefully without becoming a pain in the neck to either staff or other consumers)! 


Christine Nichols-Whiteley
Christine Nichols-Whiteley was born in Kent, England in 1944 and immigrated to Canada with parents and two older brothers. In 1949, she graduated from Wellesley Hospital School of Nursing, 1965. She also holds a BA (Hons) Sociology from Atkinson College, York University, 1979. She met her husband, Peter Michael Whiteley at Goodwill Toronto, 1981 and was diagnosed with Autosomal Recessive Retinitis Pigmentosa in 1969/70.

Age Related Dual Sensory Loss

Vision Loss

An aging population means an increase in eye disease. After age 40, the number of cases of vision loss doubles every decade, and triples at age 75. Vision loss increases the incidence of other problems that include being admitted to nursing homes three years earlier, experience twice the number of falls, three times the incidence of depression, have four times as many hip fractures and have doubled the mortality rate.

Hearing Loss

Hearing loss frequently goes unnoticed. It is the most common sensory impairment in adults over the age of 65, affecting more than 30% of Canadians in this age group. Hearing loss is serious.  Not only does it affect the physical sense of hearing, it affects overall well-being. Because of the communication difficulties it creates, hearing loss can lead to withdrawal from family, friends and social situations

Dual Sensory Loss

Some of the challenges of seniors with dual sensory loss can be distressing and may include the following:

  • Isolation due to lack of communication and limited access to information;
  • Fear of going out, socializing or a general lack of enjoyment of life;
  • Inability to perform daily tasks such as shopping, grooming, care of their home, and difficulty eating;
  • Lack of self-confidence;

Canadian Helen Keller Centre recognizes these challenges and is trying to help alleviate and or eliminate them with strategies and suggestions that staff can implement at Long Term Care homes, PSW’s and within the senior’s own homes.

If you would like more information about the Seniors Program at Canadian Helen Keller Centre, please contact Marta Zaharia at mzaharia@chkc.org or by phone 416 225-8989

Marta Zaharia
Marta Zaharia has worked in the field of deafblindness for 25 years. After many years as an intervenor with Canadian Helen Keller Centre, Marta is now Seniors Coordinator at CHKC Training Centre. Marta was one of the first graduates of The Intervenor for Deafblind Persons Program at George Brown College.  She currently is the president of the Intervenor Organization of Ontario and was a long-time member of the Deaf-blind Association of Toronto’s volunteer board.

A Welcome to the IOO Blog

            Welcome to the IOO Blog! We hope you’ve had a chance to explore the newly renovated website and are just as excited as we are for the future of the IOO! As the first official blog post, we wanted to provide an overview of what the blog is, its purpose, why we felt a blog was so needed, and the kind of content you can expect to see on this blog. Our hope is for the IOO Blog to provide a platform for all interested parties in deafblindness and intervenor services and to act as a resource for the sharing of information. We hope you’ll stayed tuned over the next year for all of the new and exciting blog posts we have planned!

            Within the field of deafblindness in Canada, there are very few resources and publications that are widely available from a Canadian perspective; those that would reflect Canada’s unique philosophy and approach to services for all persons who are deafblind. This can present as challenging for new professionals entering the field, or for families and individuals who are deafblind looking for information and also significantly limits the ability to grow, share and disseminate information as a field at large. The best possible means to grow and learn from one another is by sharing information, and in a country so geographically diverse as Canada, meeting face-to-face to share information is not always possible, especially considering that many individuals who are deafblind still do not have adequate access to intervenor services to be able to attend such face-to-face gatherings, along with the varied hours worked by many professionals in deafblindness and the need to maintain these hours of service for individuals who are deafblind. Better access and sharing of information is something that would greatly benefit all persons involved in deafblindness, but should also be easy to access regardless of where you are living, be available at no cost, and should represent a wide variety of diverse view points to ensure it reflects the diverse population of individuals who are deafblind and those that serve them. It is based on these ideas that the IOO Blog was established. We recognize the need for better access to information for all people, the need to disseminate and share Canadian-specific content, and the need to reflect as many perspectives and demographic groups as possible. We, the current IOO Board of Directors, felt that a blog would be the best way to meet these needs.

            Our hope is to provide content and blog posts on a weekly basis. Some content will be of interest to all parties interested in the field of deafblindness, while other content may be more specifically geared toward individuals who are deafblind, or family members of individuals who are deafblind, while other content may be of interest specifically to intervenors or teachers of students who are deafblind. Regardless of the demographic group, we hope there will be something for everyone. The contributors for the blog reflect a variety of individuals who are deafblind, family members, intervenors, managers/supervisors, teachers, and researchers in deafblindness. Currently, some subject areas include; perspectives of family members, working with individuals who are deafblind and medically fragile, working with seniors who are deafblind, perspectives of individuals who are deafblind, specific communication strategies, along with perspectives of professionals in deafblindness and information on new and exciting events and projects in the field.

            Whoever you are, regardless of your background, we truly hope that you are as excited about this project as we are and will find the information provided in this blog exciting and beneficial. If you have any feedback, suggestions, questions or concerns on the IOO Blog, please do not hesitate to contact Laura Aguiar, at treasurer@intervenors.ca. We look forward to what this initiative brings forward!