The Impact and Inequity of Intervenor Services Available to the Deafblind Community in Canada

AUDIO VERSION

By Penny Leclair  

The Senate of Canada proclaimed June as National Deaf Blind Awareness Month (NDBAM) in 2015, chosen because Helen Keller was born and died in June. The Canadian Survey on Disability estimates there are over 600,000 Canadians living with this disability and there is a wide spectrum of situations that cause these individuals to be classified as Deafblind. 

A person is considered Deafblind when their combined sight and hearing impairment results in challenges with communication, access to information and mobility (difficulty traveling independently and/or safely due to the lack of both vision and hearing). 

Children who are born both deaf and blind or lose all of their sight and hearing in the first few years of life, like Helen Keller, are congenitally Deafblind. Though this is not always the case, these children often have other disabilities that compound their Deafblindness. When the appropriate resources are available to teach them sign language, reading, and written communication, they can live satisfying lives. 

The second group is much more diverse, because they lose their hearing and sight through a variety of conditions and circumstances throughout their lives. The majority of those who are served by agencies that provide intervention services to adults who are Deafblind are ASL users, which means they started life as a totally deaf person, or they had very little hearing.

They have learned to communicate through lip reading or sign language, have print reading and written literacy, and may have had highly visual jobs, driven cars, and lived independent lives. Those who are born blind and lose their hearing later in life, have the advantage of verbal communication, have gained literacy through reading and writing braille and may have received a university education and be employed. Between those two extremes, there are people who may have always had some sight or some hearing and have managed using a variety of communication and technology strategies that have allowed them to cope in the outside world and lead productive and satisfying lives.  Regardless of the initial circumstances, however, Acquired Deafblind individuals eventually lose both their hearing and sight to the point where the communication methods they have relied upon are no longer viable, which isolates them from the outside world and their peers, and makes independent travel both difficult or impossible and dangerous. 

The challenge for all people who are Deafblind and their families is to find and learn new ways to communicate to stay connected to the world around them. Sadly, the only way for people who are Deafblind to connect with people, access community services and look after basic needs, is to receive intervenor support which is sparce at best, or in the worst-case scenario, not available at all, depending on where they reside in our rich country. 

“An intervenor is a trained professional who acts as the “eyes” and “ears” of a person who is Deafblind, providing specialized communications services and supports. The intervenor provides information about the environment and what is happening (using receptive language), assists the individual who is Deafblind to communicate (using expressive language), provides or develops concepts where necessary, confirms actions, assists with life skills and most importantly, assists the individual to achieve as much independence as possible within their situation. The intervenor takes direction from the individual who is Deafblind.” Deafblind Network of Ontario.

Like those of us who are blind or partially sighted, the Deafblind community understands the vast difference between living in a smaller community and life in the city. Those members of AEBC who live in small communities have a lot in common with most people who are Deafblind in Canada, because both groups have very limited transportation options, difficult mobility conditions and few social opportunities and help to get to appointments or medical care. For people who have significant hearing and sight loss, the vastness of what life is like is far greater, because they have extreme difficulty communicating, travelling, and accessing information. The primary need for those of us who are Deafblind is having access to the human, trained help of an intervenor which, as has been noted, is a resource that is, at best, scarce in Canada. 

There are no federally funded services for the Deafblind community; existing service providers depend on provincial funding, which varies widely between individual provinces and territories. Ontario, for example, has at least half a dozen agencies that work together serving adults and children who are Deafblind and though some competition exists, they each have enough clients to provide services in their regions. Manitoba has one agency that is well established. Alberta has limited services under an organization out of Edmonton that serves deaf and hearing-impaired people. Saskatchewan has a program specifically for adults, and another agency for children who are Deafblind. You will see from my current situation that BC has extremely limited services. Of the three organizations available here, one serves mostly children, while the other two serve adults who are Deafblind. I am aware of at least 50 people on the waiting list in BC who receive no services at all. The other provinces and territories have no services to assist people who are Deafblind. 

Over my life, I have experienced both the limited luxury of receiving the support and services that I need to remain active and productive in my community, and the stark reality and isolation of not having access to any of them. I was born congenitally blind with a small amount of vision in one eye, but not enough to read print. I attended Jericho Hill School in Vancouver, where I learned to read and write braille and I have been using braille ever since. I lost what vision I had about 20 years ago. I have lived with deafblindness for 29 years. When I was 44 years old, my hearing was so impaired that I could not communicate well verbally. My life was isolated to a small circle of family and friends, consisting of no more than ten people, who learned two-hand manual signing to communicate with me. This is a method of tactile touch where the signer spells out words into the Deafblind person’s palm. During these years when I lived in BC, I had no services to get out, or to support me to look after my basic needs. My husband and my sister helped when they could. I was sad and lonely much of the time. No resources existed to give me the technology that could have made the world a better place. 

In 1997, my husband accepted a job with the city of Ottawa, where we knew no one, and we had no friends in Ontario. Fortunately, I knew I could get intervention services and with this unexpected move, my life changed drastically. I learned how to use the two-hand manual more efficiently, which meant I could be a part of the community again. I did volunteer work with United Way, and I found my way into the Lions Club. All this activity was possible because I had some intervenor services. I purchased a complete computer system with a braille display through the Ontario Assistive Devices Program (ADP). From this point onward, I came out of the isolated shell I had been in. My life had meaning. 

When I discovered I was a candidate for cochlear implants, my world widened even more. To receive a cochlear implant, a person must have a small amount of hearing in one ear as well as have a functioning auditory nerve. Unlike hearing aids that are designed to enhance existing hearing, cochlear implants use digital signals sent directly to the brain, and intervenors were essential for helping to train me to understand and utilize this technology. My second article will discuss cochlear implants in greater detail and clear up some misunderstandings about what this hearing method is like.

Since then, I have managed to deal with the death of two husbands, a tragedy like no other. I had intervenors to help me with the ability to live alone. They provide safe mobility to get to appointments, shop for essentials, attend personal care service appointments, and assist with accessing information I cannot access myself. 

Fast forward to 2025, when, with the death of my second husband, I made the decision to move nearer to my family back in BC. I felt a need to be closer to my son, sister, and brother. I knew the service of an intervenor was not going to be adequate, as little is available here. Since my relocation, I have been forced to move into assistive living, because I cannot get enough intervenor help to live on my own now. The first six months were extremely challenging. Getting used to less interaction with others, less exercise, and less control over my medical information because an intervenor was not available is truly frustrating. For example, the doctor schedules visits with everyone in the residence, but my intervenor time likely doesn’t accommodate this appointment. In Ontario, I had 18 hours a week of intervenor support, here I usually can get only 3 – not enough time to get to places, do shopping or personal care.  

I have the ardent desire to see the province of BC put its significant resources into enhancing the essential services of intervention. I need my community to understand this change that must happen. Ontario is no richer than BC; we can have the same much-needed services here. I believe that the membership of AEBC can help. I know that it is easier for adults who are blind to understand why it is crucial for a Deafblind adult to have the necessary help of intervention services, which are not only important but essential for us to maintain our quality of life.

Our community within AEBC reaches out to its members to increase understanding of these situations, and lessen the isolation and frustrations of life that have more challenges. Together, we provide each other with invaluable support, understanding, and kindness.