Impact of Ineffective Communication

Impact of Ineffective Communication People who have communication disabilities report
Social Isolation Life without communication is like being a wall in a room full of people (You are lucky if people talk to you!)

Life without communication causes people to feel disconnected from others, and like an inanimate object or a piece of furniture

 

Loss of autonomy People think that because I can’t speak, I can’t make my own decisions
Reduced access to services I wanted to change my will but I know the lawyer won’t understand me and I don’t want my family members to come with me to help them understand what I am saying.
Reduced quality of services I couldn’t communicate with the nurses and doctor when I was in hospital.  They took away my communication device and locked it up for safe keeping.
Increased risk for abuse, crimes and violation of human rights I tried to tell the police about how I was abused. They told me I would not be a credible witness because I could not speak.

 

Lack of control and consent in major life decisions I had a medical procedure that I didn’t consent to.  They didn’t give me a chance to use my letter board to get the information I needed.
Discrimination I was contacted by phone to set up a job interview.  As soon as they realized I used a communication device, they told me they would get back to me and I never heard from them again.
Unemployment I am struggling to get by on social assistance, not because I lack education, skills, talents, motivation, or technology to accommodate my disability. I am struggling on social assistance, because I could not find an employer, who saw beyond the assumptions, and misperceptions, of my disability.
Compromised safety The emergency people just ignored me and asked a stranger who was standing beside me to consent to my treatment.
Loss of dignity Everyday I leave the safety of my home and suffer pity and disgust from people. I overheard a woman in a mall talking about me.  She said “He shouldn’t be let out on his own” – like I was an animal in a zoo
Loss of Independent Living I know people who have to live in long term care facilities simply because they don’t have an adapted telephone to call for help if they need it.
Mental health issues When a child can’t communicate and is on waiting lists for services, frustration develops and the child’s actions are seen as “behavior” when, really they may be the only child’s way of communicating.

Lack of Clinical Services and Device Funding

Impact of lack of services and device funding People who have communication disabilities report
Communication is not seen as a priority I think people with communication disabilities feel less human and less important than people with other types of disabilities where there are more services and funding for assistive devices
Lack of Speech-Language Pathology services Right now, seniors in long term care have almost no communication services and the people staffing these facilities have no skills in communication
Lack of Augmentative and Alternative Communication Services (AAC) Long waiting lists for AAC services; lack of AAC services and of access to appropriate communication devices and lack of appropriate accommodation for AAC interfere with the early development of communication which impedes education, inclusion, relationships, participation and self esteem. Isolation, withdrawal and depression are common.
Lack of funding for communication devices Our daughter has Rhett syndrome. She has lost her ability to speak and control her body. She is trapped in her own body, and needs  a communication device to communicate with us. We had to travel out of province to get services and we had to buy her a device she could operate with her eyes.

Disrespectful Attitudes

Barrier Examples Description People who have communication disabilities report
Assumption of incompetence Ignoring the person with a communication disability, deferring questions to an accompanying person, speaking in way that implies person is incapable, has reduced cognitive abilities and is unable to make their own decisions. My husband has aphasia because of his stroke. Unfortunately, his difficulty in communicating is perceived as an intellectual issue.

 

Generalization of disabilities Speaking loudly, slowly and a childish manner to a person with a communication disability.

 

I find people are usually very respectful – however, because our son is non – verbal they assume he is deaf. We always explain our son can hear you however, he uses a computer/phone to speak.
Unfamiliarity Avoiding interactions with the person for fear they may not understand their message.

 

 

The biggest barrier is ignorance. Many assumptions made about people with communication disabilities stem from a lack of education and exposure to the realities. Often when people think they are being helpful (e.g., speaking louder; filling in the person’s word; speaking in short, simple sentences to an adult, etc.) they are well-intentioned, but their ignorance presents itself as patronizing, belittling condescension.
Ignorance Not knowing the nature of communication disabilities and how it impacts people in different ways including one or more aspects of speech, understanding, reading and writing.

 

People often talk about people in front of them as if they cannot understand.

 

My husband has recently been diagnosed with ALS– his speech has been severely compromised and continues to decline. He has been accused of drinking. People get frustrated with him, and rolling of eyes, etc. It is horrible to see him struggle.

 

Lack of Information on how to communicate

Lack of communication skill People need information on how to communicate with people who have different communication profiles and how to negotiate accessibility requirements for people with communication disabilities.

 

 

 

 

Tendency for service providers to “pretend” they understand a person’s message, to ignore what the person is communicating or to change the topic.

 

 

If service providers do not follow a person’s communication instructions, then the interaction will not be successful. Communication will not have taken place. Communication only occurs when a message has been transmitted by one party and received by the other. If the service provider does not follow the communication directions, then only one party is participating in the communication process. The transfer of the message will be incomplete.

People who pretend to understand are disrespectful. They should ask clarification, repetition or try to improve listening conditions to understand the message projected.

Insufficient time to communicate It takes longer to communicate when a person has processing difficulties or when they use an AAC method of communication, therefore they require extra time for communicating with service providers.

 

Using augmentative and alternative communication (AAC) is typically a much slower process than oral communication. Time is needed for the person to express himself.

 

We need a way to ensure that service providers can provide extra time as an accessibility requirement for people with communication disabilities.

Telephone Services

Barrier Description Example
Inability to connect to telephone services Some websites do not provide a telephone number or email address to connect. There can be long waiting times for an answer. People with communication disabilities may rely on paid attendants to assist them to make these calls and there may be no answer within a work shift. This makes it impossible to connect. I can’t get an answer when I call some agencies.  I wish I could email them.

I have to get someone to make the call for me because I can’t push all the numbers to get through to the right person.

Agents lack information and skills to communicate with people who have communication disabilities over the telephone People with communication disabilities report that agents often hang up on them because they think they are drunk or because they think there is no one on the phone when a person is typing or can’t get their words out due to stuttering. Agents do not have training in how to communicate with person who has a communication disability over the phone; what to do if they use an AAC device or if they don’t understand their speech. People who stutter often have the phone hung up on them because they have trouble starting their message. People who have motor speech disorders may not be taken seriously because, in some cases, they sound drunk. Those who use an AAC device may not be taken seriously because the voice output sounds computerized.

 

Lack of protocols and procedures for use of communication assistance over the telephone. People with communication disabilities report they are often not permitted to use a person that they have authorized to assist an agent in understanding what they are communicating over the telephone. I needed to make a phone call to Revenue Canada.  Because I spell out what I want to say on an alphabet board, I wanted someone to read out my message over the telephone.  They would not let me use a communication assistant or explore ways to ensure that I had authorized this person to be my voice.
Lack of alternate communication options to the phone. Many people with communication disabilities  want to use alternate ways to telephone communication such as email or skype or in person meetings I can communicate independently through email, yet many service providers including my own doctor’s office refuse to use email and force me to have someone call for me. They claim it is for privacy reasons yet email is much more private for me than having someone call on my behalf and learn about my health information.

Public Consultations, meetings and committees

Barrier Description Example
No communication accommodations at events Unlike people who are deaf who can request sign language interpreters, and people who are deafblind who can request intervenors, people with communication disabilities are not offered trained communication assistants to support them to communicate in these situations. I can’t just show up at a meeting and expect that people will let me communicate using my letter board because there is nobody there who can assist me. There are no trained communication assistants at these events to help us communicate.
Lack of alternate options to contribute People with communication disabilities require a range of accessible ways to contribute and participate at public consultations and events, such as online, print, graphic, symbol enhanced information and questionnaires. A written survey is often a much easier way for me to give my input because I can discuss it at my pace and get support from people to complete it.
Moderators at meetings People with communication disabilities may need to program their device or write what they want to communicate ahead of a meeting or event. They may need the moderator or chair of the meeting to instruct the participants about how to facilitate their involvement. Event moderators think I can’t contribute.  They don’t know how to give me a chance to communicate because they are worried that everyone else will get bored waiting for my message.
Communication supports (graphics and symbols) People with communication disabilities may need  vocabulary in pictures or symbols to communicate about issues relating to topics being addressed. People with aphasia needed the pictures to help them understand this survey.

Information and Communications

Barrier Description Example
Reading and understanding written materials People with communication disabilities, who have reduced or impaired language and / or literacy skills, may require accommodations to read and understand written information that is in print, on a website, or in e-communications.

 

In addition, many family members report difficulty when getting information from services on behalf of a loved one because they cannot access these services or get information in ways they understand.

There are huge barriers in obtaining information from government service providers. Health information, government information, banking information etc. is not presented in a communication friendly manner.

I think all communication needs to be in plain language, universal design for learning principles where people access the same information in an easily accessible way.

Some of us need pictures or symbols to enhance our ability to read a document.

Navigate websites and handle paper People with communication disabilities, who also have physical disabilities, may require accommodations to access printed brochures and navigate websites and e-communications.

 

Because I use a switch to access web pages, I want pages that are easy to navigate and do not involve a lot of scrolling.  When it’s a paper copy I need someone to help turn the pages.
Alternate formats People with communication disabilities may want print material in large font or sent to them electronically so that they can read them using a screen reader on their computer. It’s easier for me to get document in electronic format so I can use my screen reader and also look up words I may not understand.
Alternate signatures People with communication disabilities, who also have motor disabilities, may have difficulty physically signing documents and require alternate signatures. Many People with communication disabilities experience challenges signing documents because service providers question their cognitive capacity to make decisions. Any alternate signature should be the one that is used regularly by that particular individual. It may be necessary that signatures are witnessed if it is something easily copied such as an X.
Note taking People with communication disabilities, who also have motor disabilities that affect their ability to write or type, may require accommodations  to take notes at a committee meeting or public event. In some situations, like a classroom or lecture I want someone to take notes for me or I want to record the session so I can listen to it again.
Forms People with communication disabilities, who also have motor disabilities that affect their ability to write or type, may require forms that they can complete using their communication device or computer. These forms should allow them to take frequent breaks I want forms in electronic format that I can use with my typing program which gives me word prediction and spell checking.  I also need to be able to save forms and come back to them because I get tired when typing.