Dec 2017 Express & Star News

Pat McFaddenPat McFadden, Labour MP for Wolverhampton South East, spoke during a debate in Westminster

He revealed the experiences of his constituent Lamina Lloyd, 43, of Springvale who had to give up work due to hearing loss and cannot secure a cochlear implant operation that could transform her life. Pat said in the debate: "There are many aspects to deafness, but I want to focus on one particular issue and that is the criteria for receiving cochlear implants under the NHS. My argument is simple – these criteria should be reviewed; it should be made easier to get an implant; to do so would transform the lives of those who need this technology; it would improve the lives of their families and loved ones and it would be a prudent investment because it would obviate the need for more expenditure further down the line."

Speaking of the story of Ms Lloyd, Pat said: "Until last year Lamina had a flourishing career as the manager of a local Citizens Advice Bureau. However, Lamina has Meniere’s disease which has resulted in progressive hearing loss, so much so that last year she had to give up work. She has two children who themselves have additional needs. She can no longer hear her children, who have to act as her ears. She describes her family life as having gone from being an outdoor family to one that rarely leaves the house. Lamina is an intelligent, capable outgoing person but for her, hearing loss has meant the end of her career, a deterioration in the quality of her family life and increasing isolation. To try to alleviate her condition Lamina wears the most powerful hearing aids available turned up to maximum volume, but they make little difference and give her frequent ear infections and headaches caused by feedback and squealing."

Pat hopes that by raising awareness of Ms Lloyd's story, it will highlight the importance of early assessment and the positive impact of implants. Pat added: "Even if Lamina is approved for an implant, the question has to be asked why has it taken so long and why do we put people and their families through such pain before giving them the help that could make a life changing difference?

If my constituent had been helped earlier, she might still be in a job, would not need to rely on the state for financial support and her family would not have had to share the difficulties they have all been through together. It is time for a step change in the urgency with which this issue is treated. The guidelines must be revised and it must happen quickly. NICE needs to move faster on this so that the suffering of my constituent Lamina Lloyd and the many people around the country who are in a similar position is alleviated."

Dec 2017 Huffington Post

SistersFrom left to right: Lipa, Shormila, Shipra sisters who learned how to sew and start a business through the organisation BRAC.

Walking down the street in Dhaka, Bangladesh, one can hear the chatter of school children, honking rickshaws, and, if one listens closely, the whir of sewing machines adeptly operated by two remarkable women. Shormila and Shipra are sisters, both hearing impaired, both with a story to tell. There are 16 million people with disabilities in Bangladesh, many of whom have not been given an opportunity to develop their talents. Shormila and Shipra prove what is possible when they are given a chance.

Shormila is shy and became deaf when she was eight years old. “My father struck me very hard one day,” Shormila said. “I developed a high fever and lost my ability to hear.” Her parents couldn’t afford treatment. Shormila found it increasingly difficult to cope with every day tasks. “We live on a busy road and I stopped going to school because I was scared of speeding cars when I tried to cross,” Shormila said. Shormila stopped going to school in the fifth grade. Before the accident, she had been outgoing, but quickly began to withdraw. She eventually became mute. It took years of support from her sisters for her to muster a few words. She is still dependent on her sisters when it comes to speaking with outsiders.

ShormilaShormila is a member of BRAC’s skills development program

Shipra, the younger of the two sisters, lost her hearing as a result of typhoid fever. “While sick, my mother would put mustard oil and garlic in my ear before going to sleep, but this home remedy actually ruptured my eardrum,” Shipra said. She became deaf in her right ear. As the most studious member of the family, Shipra found it difficult to concentrate in her classes. Her teacher was also not equipped to teach a child with disabilities. Shipra eventually dropped out in eighth grade. “We live on the edge of the town. Trucks from outside the city are constantly coming in. It took me time to get used to the bustle, but I was determined to go out by myself,” Shipra said. “Just because I dropped out of school did not mean that I would stop doing everyday tasks.” Shipra soon realised that society was not sensitive to the needs of people with disabilities. People would shun her, which made accessing basic services extremely difficult.

A teacher like no other

Mohammad Abu Bakar has been a tailor for 27 years. His classroom does not have any chalkboards or tables. Instead, colourful thread and bright fabric is everywhere. He is particularly proud of a sturdy pair of scissors that he inherited from his uncle. “He gave them to me after he retired,” Abu Bakar said. “He was passing on the legacy and trade that he had taught me.”
Abu Bakar runs a small shop in the Demra district of Dhaka. He developed his skill by working in other shops before he saved up enough to buy his own space. “My thriving business would not have existed if my uncle had not taught me this trade,” he said. This influential mentorship from his uncle inspired him to become a master trainer for BRAC’s skills development program.

Abu bakar

Abu Bakar is a trainer in BRAC’s skills development program

His shop is only a 10-minute rickshaw ride from Lipa, their sister, and Shormila’s house. He taught both the sisters for six months as part of the program. Abu Bakar’s shop is located in a central part of the market place, so the girls quickly learned how to interact with customers. “I was more than happy to teach the girls,” he said. “I wanted Shormila to understand that she has just as much potential as anyone else.” At first, he had a tough time teaching Shormila. “I spent a week or two pondering on how I would teach her. I soon realised that sign language would work,” he said. He created different signs for stitching, pleating, and folding. Abu Bakar became a mentor for the two sisters. He knows that he has a short time to teach the trade, but nothing makes him happier than seeing them graduate after the six-month program ends. He knows they will move on to bigger ventures, just like he did. “Lipa and Shormila still come to visit me. They tell me that I’m going to have to do the same when they finally set up their own shop, just like mine,” he said.

SistersApproximately one in ten people live with a disability in Bangladesh. Stigma and discrimination restricts them from fully participating in society and gaining employment. According to the International Labour Organisation, 80 percent of people living with disabilities in developing countries are unemployed. Even if a person with a disability does get a job, they often end up in an unregulated industry, which can be hazardous and exploitive. BRAC’s skills training for advancing resources, known as STAR, innovates on an age-old Bangladeshi apprenticeship model and integrates young people with disabilities, like Shormila and Shipra, to help them gain employment.

The training is designed for youth who have dropped out of school. Young people who face discrimination, including people with disabilities including orphans, the children of sex workers, and transgender youth, make up one out of every ten graduates. Ninety-five percent of graduates are employed after the program ends. The training program pairs students with a master craftsperson like Abu Bakar. Apprentices receive hands-on training and classes for six months.

A study by the ILO reveals that exclusion of persons with disabilities from the labor market globally results in an estimated loss of GDP of up to 7 percent. “Bangladeshi employers who have hired people with disabilities speak highly of their performance, loyalty, productivity, retention, regularity in attendance and overall workplace performance,” said the President of the Bangladesh Employers Federation, Salahuddin Khan. The biggest challenge is not in preparing people with disabilities for the job market, but in finding trainers and employers who are willing to invest in them.

Dec 2017 Berea Mail

The launch of the “Activism against women and child abuse” once again turns the spotlight on the violence many women in society are victims of. There are many stories shared of the horrors of violence against women and children. One such story is of Glenwood resident, Bev, a victim of physical abuse in a previous relationship that left her almost deaf. The physical abuse Bev suffered resulted in the nerve endings to her ears being severely damaged. “My nerve endings are dead and the right ear damage is so bad that there are no signals to the brain. I was told no hearing aids would help me, and my only option would be a cochlear implant to my left ear,” she said. Having worked for a certified financial planner for 11 years Bev’s deteriorating hearing led to her being put on half day at half the salary she had been earning. After her employer left the company she managed to get a job working at a bank as a data capturer. However, over the past five years her hearing has continued to deteriorate and her only option was to apply to her medical aid to fund a cochlear implant. The medical aid declined her request four times.

BevBev shows her new cochlear implant.

When Bev took a nasty fall and broke her pelvis, hip and injured her neck she was put on early retirement. Fortunately for her, her medical aid had finally relented and conceded to pay for her cochlear implant. Because Bev is unemployed, she had to cancel her medical aid and now finds herself in a difficult situation. Since undergoing the implant surgery. the implant has been switched on, and the experience of being able to hear sound again she described as “excruciating, emotional and unbelievable.” However, the implant needs to be tuned, but without medical aid, Bev cannot afford it.

“I’m still trying to get used to it and to hearing different sounds. My friend Colleen Welgemoed spoke to Louisa Hitchcock, as her daughter Helen has had cochlear implants, and they have started fundraising for me to try raise money for the audiologist to tune my implant,”she said.

Sadly, her family is unable to assist. Her mother, with whom she was very close, died last year, and was followed tragically by her brother. “It’s been such a bad year and now I have lost my job on top of it. Louisa is going to sell calendars as part of a donation fund to help with ongoing expenses, and I am selling banana bread to raise money, as each time my audiologist tunes my implant, it will cost over R900,” she said.

Being alone was a challenge, she said. “I’m really battling. I’m just grateful the operation was a success as if it had failed, I would be stone deaf. My doctor, Dr Schlemmer, was brilliant. I must commend him, he was kind, caring and sympathetic. My audiologist, Kara Hoffman, is also brilliant and extremely kind. It’s been a long hard road, but thanks to Louisa I hope to be able to go forward. I’m excited as Kara said at the first tuning she will connect to my phone via Bluetooth so I can hear on my cellphone and I will be able to Skype my new granddaughter. It’s very emotional!” she said.

Bev said she was also looking for any employment as she needed an income. “My body is weak so I can’t do any heavy lifting, and I won’t be able to do too much telephoning in the beginning, but I have phenomenal computer and admin skills,” she said.

Dec 2017

A local girl is a shining example of why early intervention for children with hearing problems is so important. Abigail McQuay, 14, leads a regular daily routine and attends school at St. Francis of Assisi in Red Deer. Her parents say at the age of one, Abby wasn’t speaking. It wasn’t much later that a babysitter suggested she may have auditory issues. At 18 months, Abby was sent to Children’s Hospital in Calgary and by age three, she had her first cochlear implant. Her other ear was done at age six. “We had a lot of misdiagnoses in the beginning and Red Deer’s hospital didn’t test for hearing loss in newborns,” says Carla McQuay, Abby’s mother. “We didn’t know Abby was born deaf.” Carla admits she thought the procedure to implant the equipment into her daughter’s cochlea seemed drastic, but after meeting other families of deaf children, she was sold. It’s fortunate that she was convinced early on because as Bernadette Falconar, a peadiatric audiologist in Calgary points out, if a child with hearing issues isn't seen early enough, there is unfortunately a point of no return. “If a child turns up here at eight and has never heard before, even if given cochlear implants, they would never understand speech,” she says. “It’s all based on an early timeframe to get sound into the ear and up to the brain.”

AbigailAbigail and brother Jackson

Falconar points out Alberta is somewhat late to the party in terms of early childhood hearing detection and intervention. A new Early Hearing Detection and Intervention program is now available at select sites across the province and will be fully rolled out come next October.

Meanwhile, Abby, a former member of her school’s running club and current dancer and gymnast outside of school, says she already has aspirations for post-secondary. “I want to be an audiologist when I'm an older,” she says. “I was inspired by some of my audiologists a couple years ago. It's really cool to see the technology improve. I want to be able to help other people be able to hear, speak and write.” Abby still enjoys her quiet time. The implants easily come right off, which she uses to her advantage when studying or when a scary movie gets too real, according to her mom.

“I am very glad for the decision my parents made with the cochlear implants,” says Abby. ‘It’s definitely helped me a lot in life.”

Dec 2017

Jeffrey Mota, 12, has been learning to talk for the first time. But it's not an easy task after an entire life of silence. KVUE first met the Deer Park Middle School sixth-grader in 2016 when his father was trying to fulfill his late wife's dying wish of getting cochlear implants for Jeffrey. We've been by their side ever since. Jeffrey has been undergoing speech therapy since his cochlear implants were turned on in January. Given what Jeffrey has been through, his speech pathologists said it is going as well as can be expected.    

Think of it this way, most of us start hearing when we're babies. Jeffrey started hearing at the age of 11, making his listening age less than a year old. His brain is now working overtime to rewire itself to use sound again after it had already gotten used to not relying on it at all. "That means his brain is trying to process this input for the first time which is difficult for him because his brain has rewired itself to visual because he takes in information visually," said Katie Barnett, a speech pathologist with the Round Rock Independent School District. When she first met Jeffrey, he was nine-years-old and in the third grade. That's when he first started school in the U.S.
To understand why Jeffrey is behind, we have to explain his childhood. Jeffrey didn't arrive in the US until 2014 after Joel and Rosie Mota adopted him. He was an orphan, abandoned at a subway station in China. The couple saved money for Jeffrey's cochlear implant surgery, but unexpectedly, Rosie's breast cancer returned. She died last year.

JeffreyTwo months later we met Joel when he was trying to raise money to get Jeffrey the cochlear implants.

We were there as Jeffrey got the implant surgery a year ago and again as the implants were activated in January. His father, Joel, said the therapy has made a world of difference. "It makes life so much easier for him -- so much easier for me just to be able to have a conversation. We go to a restaurant, I don't have to order for him anymore. He can read the menu now and he can order himself," said Mota. 

Barnett also said Jeffrey has made huge improvements. "When he first started, everything was new to him. He didn't have a word to explain what he was thinking or feeling or seeing," she said. "He'd see something, we'd give him the word for it. He'd pick it," Barnett said. Communicating between the two was difficult at first because Jeffrey didn't know English and Barnett didn't know Chinese. So they relied on pictures. Thanks to Jeffrey's motivation and curiosity, Barnett said he has come a long way. At first, she worked on building sentence structure, grammar, vocabulary, understanding concepts and following directions. Now, that has evolved to working on his speech and listening skills. Jeffrey excels at math because it's concrete. "It's a lot of work for Jeffrey to be able to do these things. I feel like he does work hard and I'm seeing the progress that he's making," said Barnett.

Dec 2017 Cision PR Newswire

When it became clear that hearing aids weren't enough to help 9-year-old Emma Kriegstein, her parents and the audiologists knew it was time to turn to different technology to improve her hearing. Emma was born with progressive sensorineural hearing loss, permanent hearing loss caused by an abnormal or damaged inner ear. Emma's hearing loss was confirmed when she was four-and-a-half, although she had expressed difficulties from a younger age. A neighbour referred them to The Hearing Centre, which immediately recommended hearing aids. While the devices worked well for around three years, Emma's parents Elizabeth Feudale and Neil Kriegstein noticed diminished hearing in her left ear, a decline which continually worsened. "We were shocked – even though there was a family history [of hearing loss] on both sides, nobody had trouble as a child," said Kriegstein. "We tried coming up with 1,000 excuses as to why it could be wrong, but there was no question that Emma needed help."

EmmaDr. Perle, Dr. Sandler, and Emma.

"We've been working with Emma and her family for several years, and we were constantly changing the settings on her hearing aids," added Dr. Stefanie Perle, The Hearing Centre's lead audiologist on cochlear implant cases, and one of three audiologists working with Emma.  "The hearing aid was no longer providing sufficient benefit. Her best option… was to consider a cochlear implant.” According to Dr. Eric Sandler, director of audiology "patients need to meet audiological and medical criteria to receive the implant, and Emma was a perfect candidate.”

Emma received her implant this past July, and the device was activated by Drs. Sandler and Perle in August. Since activation, Feudale said that there has been a "drastic, positive" change in Emma's hearing. "There have been major improvements large and small alike, I can call for her from downstairs while she's upstairs and she can hear me. I can talk to her with my back turned and she will be able to answer me. These life improvements have made a huge difference.” "The implant has changed her life by leaps and bounds," Kriegstein added. "She has picked up on sounds we take for granted, such as a piano playing in a song, and she lights up with joy when she can hear them.”