Advocate says province underfunding deafblind

[Miss-Delectable]

Advocate says province underfunding deafblind

The executive director of Deafblind Services of B.C. says being both deaf and blind in the province of B.C. isn't enough to receive assistance from the provincial government.

"If you're an adult and not developmentally challenged, just being deafblind isn't enough," said Debbi Salmonsen.

While adults in B.C. who were born deafblind are entitled to intervenor services, individuals who lost their site and hearing later in life are not. An intervenor helps the deafblind not only communicate, but also navigate their surroundings.

Intervenor services for the deafblind are provided through Community Living B.C., a provincial crown agency mandated under the Community Living Authority Act, to deliver supports and services to adults with developmental disabilities and their families. According to Salmonsen, there are about 150 known deafblind adults and children in B.C., but she added there are many more who haven't been deemed as such because they have numerous disabilities. Deafblind adults, without developmental disabilities, who became deafblind over time are entitled to some free intervenor services such as during medical appointments. They're also able to pay for those services on their own, but since many deafblind adults live on disability pensions, it's difficult for them to afford the average cost of $25 per hour.

As a result, society staff are forced to fundraise almost full time to raise money for intervenor services. It was the society who paid for those services during a recent interview with Eddy Morten, who has acquired deafblindness. Morten says he's perfectly capable of looking after his own needs when it comes to running his household, it's when he ventures out to do errands such as grocery shopping or banking that an intervenor is vital.

Morten, who works part-time as the society's intervenor services coordinator, said limited funding for intervenor services means many adults with acquired deafblindness with no close friends or family, are living in isolation and fear. Morten said he meets many acquired deafblind individuals through the society who are in desperate need of intervenor services, but can't afford them.

"I met an older woman who lived with her sister, but her sister just passed away," says Morten. "Now she's completely alone and stuck at home. She has little food and has lost weight. I'm very concerned about her. It's very sad."

Ellen Faustman, director of intervenor services for the society, said intervention for the deafblind is so much more than interpretation. "An interpreter just works with words," said Faustman. "But a specially trained intervenor is an information gatherer. When a deafblind person walks into a room an intervenor lets them know, 'There's a plant here,' or that someone just walked into the room and they're shouting."

Even using HandyDART or a taxi is a challenge for the deafblind. Taking for granted the deafblind adult has a buzzer system to allow the driver access to their home, without an intervenor the individual can't see the driver, has no idea they're being dropped off in the right place and can't tell if they've been given the correct change.

"Without an intervenor they stop going out and become isolated," said Faustman. "It's a vicious cycle."

 

[Miss-Delectable]

Silent treatment

Silent treatment

Grocery shopping can be a chore--no matter who you are. For Eddy Morten, it's a particular challenge. Without assistance, the Burnaby resident estimates it would take at least three hours to buy 10 items.

But with the help of a specially trained intervenor, the 48-year-old breezes through his shopping list.

Morten is fortunate because he has family to help him, while many other deafblind individuals in B.C. struggle due to cuts to intervenor services by the provincial government. There are approximately 150 deafblind children and adults registered with agencies in B.C., but it's estimated there are many more who have slipped through the cracks.

Life is tough, but Morten doesn't let his disabilities prevent him from enjoying a productive life. In fact, during a January interview at the Fraser Street office of the Deafblind Services Society of B.C., his keen sense of humour is apparent. "I definitely have a good sense of smell, so I know when my food is burning," grins Morten, signing with the help of trained interpreter Stephanie Attridge.

The society hired Morten in 2007 as a part-time volunteer intervenor services coordinator. Intervenors for the deafblind vary from interpreters for the deaf because they also mediate between the individual and their surroundings. Instead of translating words though sign language, an intervenor assists the deafblind to safely navigate the world around them. Common communication styles used by the deafblind include American sign language, adapted sign, British manual sign, tactile sign, braille, picture symbols and/or object cues and very large print.

On this day, Morten and Attridge sit face to face, their hands flying as they use hand-to-hand sign language to communicate. Each time the reporter asks Morten a question, Attridge takes Morten's hands and signs, sometimes touching his fingers to her face or arm.

The interview would have been impossible without intervenor services, which in this instance were paid for by the society. Morten travelled to the Vancouver office from Burnaby using rapid transit, accompanied only by his service dog, a black Labrador retriever named Hope.

Like many deafblind children in Canada, Morten attended W. Ross Macdonald School for blind and deafblind students in Brantford, Ont., where he excelled as a wrestler. Morten was born deaf with some sight. His older brother, Pier, is also deafblind. At age eight, Morten's eyesight began to fail and he underwent surgery for retinitis. But the old technology used four decades ago did more harm than good and Morten became blind in his left eye. The sight in his right eye started to fail and he began to show early signs of Usher Syndrome, an inherited condition that causes serious hearing loss as well as retinitis pigmentosa, which causes vision to worsen over time. Ten years ago, Morten was declared legally blind.

According to the society, deafblindness is a complex disability that combines varying degrees of hearing and visual impairment, making it unique to each individual. While some may not be completely deaf or completely blind, they still don't have enough of either sense to navigate their environment independently.

Although all individuals who are deafblind experience challenges with communication and mobility, many also have additional physical disabilities and medical issues. Because of the complexity involved in having two sensory impairments, deafblind individuals require services unique from those designed exclusively for either blind or deaf people. With the help of interpretive services, deafblind individuals, including those with severe disabilities, can build life skills to gain independence and contribute to their community.

A person born with combined sight and hearing difficulties has congenital deafblindness, while those who develop those problems later in life are considered as having acquired deafblindness. Acquired deafblindness may be the result of an accident, illness or aging. Individuals born with a genetic condition, such as Usher Syndrome, may progressively lose their sight and hearing.

Morten, a single father of two, makes his own schedule, cleans his own home and enjoys cooking, especially his favourite potato and onion stir-fry recipe. But walking outside can be a challenge. He wants to see more vibrating push buttons installed at crosswalks across Metro Vancouver. Morten, who lives next door to his mother in a duplex, notes his boys, ages 10 and 14, are very respectful of their dad. "If I lose something, like my glasses falling off, they both help me right away," says Morten, who used to wear glasses.

Morten communicates using braille and a telecommunications device for the deaf, which he uses when answering and monitoring the emails, blogs and comments posted on the Deaf-Blind Sports Zone website he helps administer. The site is designed to keep deafblind sports enthusiasts up on the latest sports scores and news. A short video of Morten communicating with the help of an intervenor can be seen on YouTube. (Search Eddy Morten at Deafblind Society.)

Morten's job at the society includes matching deafblind clients with intervenors. The society fundraises full time to supply intervenor services to deafblind clients who can't afford to pay on their own. Morten explains intervenor services for deafblind children are paid for by the provincial government until they graduate from school. It's at that time adults with acquired deafblindness in B.C. are left to fend for themselves.

"Without an intervenor, deafblind adults can't take part in social activities--so they live in isolation," Morten says.

It was a group of B.C. parents that formed the Deafblind Services Society 25 years ago to provide programs for their deafblind children. Today, the society assists deafblind adults throughout B.C. to communicate and access the world around them by providing one-to-one support workers/intervenors to help them pursue their interests and goals, as well assist with their daily needs. Intervenors provide support at family, individual or residential homes.

The local society was formed as a sister organization to the national Canadian Deaf Blind and Rubella Association, founded in 1971 by Ontario parents Jacquie (deceased) and John McInnes for deafblind children who attended W. Ross Macdonald School. In 1975, Arbutus residents John and Gail Gerwing and other parents of children who attended the school got involved and John was named chair of the B.C. chapter. The name of the national group was later changed to the Canadian Deafblind Association. The original goal of the association's members was to raise government and private funding for summer programs for their deafblind children while home on holidays from school.

The CDBA was also an advocacy organization representing a small group of B.C. children born with deafblindness largely from the congenital rubella epidemic in the 1960s. It's since evolved to include increased services, awareness, public education and research. The society and CDBA work together to ensure smooth transitions for deafblind youth. The CDBA offers early intervention services and summer programs for deafblind children in school, where they receive classroom support from the school board, while the society provides day and residential programs for youth when they leave school.

The Gerwings are the parents of 44-year-old Liza Gerwing, the youngest of their two daughters, who is deafblind due to complications attributed to a premature birth and the excessive use of oxygen to save her life at the time.

"When Liza was born the doctor told us she wasn't expected to last the night," says John Gerwing. "But she's a fighter."

After spending several months in hospital in an incubator, Liza was able to return home, but Gail soon noticed her baby girl's eyes weren't focusing, while one also looked larger than the other. Fearing Liza had cancer, doctors removed her eye and sent it for tests to Washington, D.C. After a stressful wait, the results proved Liza was cancer free. She did, however, start having seizures at around four-months old, which continue today.

Despite her rough start in life, Gerwing says his daughter has proved to be a fighter and today with the help of an intervenor, regularly works out at the gym, swims weekly at UBC, attends yoga classes and works part time at the Keg restaurant on Granville Island, where she sorts cutlery and folds napkins.

Growing up, Liza also loved to ride horses and was an accomplished gymnast, mastering the uneven bars. Liza began attending W. Ross Macdonald school in 1973 at age six.

"She was always a very active, very capable child," says Gerwing. "She always loved to go on long walks and jumping on the trampoline. I kept a string attached to her so she wouldn't bounce off, but she always knew where the centre of the trampoline was. She'd jump so high she'd scare the hell out of you."

Because Liza was deafblind from birth, her intervenor services are paid for by the government. The Gerwings provide most of Liza's needs outside of intervenor services, which John says his daughter must have if she is to continue to thrive.

"She's capable of many things, as long as she has that help," says Gerwing. "Without it, she'd be sitting in a corner doing nothing. Other deafblind adults need intervenors to work with them too. If not, they're left sitting at home. It's a very dark silent world out there for deafblind people who don't have that help."

During a December visit to Liza's warmly furnished Kits apartment, a brightly decorated Christmas tree lit up the living room. Christmas is one of Liza's favourite times of year and she loves the smell and feel of live trees, one of her intervenors says.

"But as soon as the Christmas tree comes down, Liza starts signing about camping," says intervenor Alyce Lyall. "She loves to camp."

Liza lives alone, but with 24-hour care. Lyall, who's been assisting Liza for 12 years, is one of a team of caregiver/intervenors who help her do everything from visiting the doctor to grocery shopping. Lyall says while grocery shopping, Liza insists on pushing the cart, while the caregiver supplies discrete steering. She adds Liza has a stubborn streak and a mind of her own.

"Sometimes when she's finished doing something like eating, she'll just stay put and refuses to move," says Lyall. "And I don't blame her. When you have people telling you what to do all the time, it's the only control she has."

But Liza does have choices, says Lyall. A square board sitting next to the Christmas tree is divided into the days of the week. Marking those days are small items, such as a piece of terry towel or part of a plastic grocery bag, attached to small squares backed with Velcro. "Those tactile messages are how we communicate when we plan Liza's schedule," says Lyall. "A piece of towel on a square means swimming and the Safeway bag means grocery shopping."

Lyall calls Liza an "inspiration."

"Liza is so capable and she's way stronger than me," says Lyall. "And because she doesn't understand, she has no fear. When she was doing gymnastics, she had no problem doing the high bar."

Lyall studied sign language at Vancouver Community College for a year, after her sister married a man with a deaf brother. She had never considered using her new skill as a career until a woman taking the same course told her about an opening to help care for Liza. Lyall was trained in sign language, but because Liza can't see her hands, the pair had to create their own way to communicate, which includes hand-to-hand signing.

Lyall says the best part of her job is that Liza has become family.

"She's like my sister."

Debbi Salmonsen, executive director for the deafblind society, says before Morten leaves his Burnaby home to travel to the centre, he sends a text message asking about the weather and if there's any construction on Fraser Street he should know about.

"Then we'll text him back and tell him he needs to walk on the other side of the street today and go an extra block to get to the light," says Salmonsen. "It's astounding the way Eddy gets here from Burnaby."

She notes everyday learning is a huge victory for most deafblind individuals. She calls Morten's technology skills, "incredible."

Ellen Faustman, director of intervention services for the society, says for many deafblind individuals, their hands become their eyes and ears. "They develop a heightened awareness and sense of perception," says Faustman. "You can't sneak up on Eddy."

She says the key to being highly functional is early intervention and ensuring information gets to the deafblind. She adds it's also important that people with multiple disabilities, including a lack of sight or hearing, are recognized and deemed "deafblind," to ensure they receive the services they need.

"[Deafblind] school-aged children need support by way of special education programs, but first they need to be tagged as deafblind," says Faustman. "Too often they're just considered as being multi-handicapped."