Deafblind Services Society of BC

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” – Helen Keller

Founded by a group of parents in 1987, Deafblind Services Society of BC (DSS) was committed to creating lives of meaning for people living in BC with highly unique communication and information gathering needs. For nearly 30 years DSS (originally called Deafblind Rubella Society) supported individuals with access to intervention services, offered housing options and provided community inclusion opportunities to ensure health, well-being and lives of dignity for those served.

Deafblind Serves Society served a unique and diverse group of individuals with equally diverse support needs. Deafblindess by definition is an information gathering disability. Not all individuals who are deafblind are completely blind and completely deaf. Some are, and some have some sight or some hearing. An individual is considered deafblind when they can use neither their sight nor their hearing to compensate for the impairment of the other sense. Further, neither sense can be used a primary source for accessing information. Each individual who is deafblind has unique communication, learning and mobility challenges due to their dual sensory loss.

“Once I knew only darkness and stillness…my life was without past or future…but a little word from the fingers of another fell into my hand that clutched at emptiness and my heart leaped to the rapture of living.” – Helen Keller

The journey to community inclusion for people who are deafblind has been a challenging one. Until the 1980s, parents of children with special needs had no access to community supports and for many the only option was institutional living. These institutions offered no access to specialized communication techniques or other opportunities for development. At the same time, families were not offered choice regarding where their child would live; children were often moved to institutions far away making it difficult to visit or ensure quality of care.

As the community living movement gained momentum and institutions began to close, a dedicated group of parents continued to work tirelessly to find options for their children. Respite supports were accessed through agencies with experience supporting individuals with special needs. Some families chose to send their children to Ontario where they could receive intervenor supports through the Canadian Deafblind and Rubella Association (now the Canadian Deafblind Association). The Deafblind Children’s Services Society of BC offered some early intervention services in addition to providing a family camp which offered sign language training for family members.

It was the establishment of a home for two women who are deafblind that became the birthplace for Deafblind Services of BC. It was here that the women were able to live with special adaptations, supported by staff who were able to learn to communicate and respond to their specific needs. The women were able to communicate their needs with sounds, signals and picture symbols. Family members were encouraged to be an active part of their lives. Through the support of their intervenors, they discovered the world around them.

An intervenor is a person who is highly trained to provide intervention to an individual who is deafblind. The intervenor facilitates the person who is deafblind to understand his or her environment to enable him or her to communicate effectively with the world around them. An intervenor acts as the eyes and ears of the person with deafblindness; providing descriptive and undistorted information in the manner is that most accessible to the individual.

After its founding, Deafblind Services of BC continued to create lives of meaning for the people it served. Additional homes were established in metro Vancouver and community inclusion services were established in a few communities across BC. Finally in 2000 the first intervenor training was offered in BC, allowing better access to qualified staff for the people served by DSS. As individual supports improved, so did the quality of life for those supported, and for their families. Individuals were supported to find meaningful employment, volunteer opportunities and more full community inclusion.

In 2014, when faced with fiscal challenges due to their relatively small size, the Board of Directors of Deafblind Services made the difficult decision to cease operations. With two homes located in Richmond supporting six individuals and two individuals accessing community inclusion supports, DSS looked to RSCL which shares a similar philosophy of supporting individuals to celebrate their unique gifts to fully participate in community.

In April 2015, RSCL assumed the delivery of services in Richmond for both group residential programs and both community inclusion contracts previously offered by Deafblind Services Society of BC (DSS).

Story of Mildred DeHaan – Founding Member

From the very beginning, Mildred DeHaan was committed to helping her daughter find a life with meaning. Born in 1952, Catherine’s birth was difficult and it was clear from the beginning that she had complex medical needs. She spent her early years at living at home, with limited access to supports. When she was 12, at the urging of specialists, her parents made the difficult decision to put her in Woodlands School. They hoped that Catherine would receive the physical supports and therapy she needed, along with the learning opportunities they could no longer provide her.

One day, without warning, the family was notified that Catherine would be moved to Tranquille in Kamloops. They were given no choice regarding the move which placed an extreme burden on Mildred who was previously able to make regular visits to her daughter. Very quickly following the move, Catherine’s health and behaviour began to deteriorate. Numerous letters to government officials asking for help were met with no effective change. Convinced that their daughter would die if she stayed there, and without knowing how they would support her, the family removed Catherine from Tranquille in 1979.

As she cared for her daughter whose weight had dwindled to a mere 85 lbs and who suffered severe agitation while she suffered through the withdrawal effects of the heavy medications she received at Tranquille, Mildred searched for care options for Catherine. She was able to access some respite care through community living agencies but there were no services available to meet Catherine’s unique needs. Eventually, along with another family with a daughter who was deafblind, Mildred established a home in which the two women could receive the specialized care that they required.

Catherine’s ability to learn to communicate was remarkable and rapid. Mildred, along with other parents of children who were deafblind, founded what became known as Deafblind Services Society and continued to work to change community and government perceptions so that people who are deafblind have lives with meaning, dignity and happiness.

Glossary of terms (courtesy of Canadian Deafblind Association of BC)

Deafblindness: An individual who is deafblind is someone who has a combined loss of vision and hearing and neither their vision nor their hearing can be used as a primary source of accessing information.

Intervention: The dictionary defines Intervention as to go between or to mediate. With regards to individuals who are deafblind, Intervention is the process of communication with an individual who is deafblind; providing them with clear and unbiased information from the environment in the preferred communication mode of the deafblind individual so that he or she can interact with his or her environment.

Intervenor: An Intervenor mediates between the person who is deafblind and his or her environment to enable him or her to communicate effectively with and receive non-distorted information from the world around them using the communication method preferred by the individual who is deafblind. This communication may include, but is not limited to, sign language, adapted sign, British Manual sign, tactile sign language, picture symbols and object cues.