For people with hearing loss, a lack of assistive listening devices in an auditorium is as much a barrier to enjoyment of a performance as a steep flight of stairs would be to someone with a mobility disorder.
Hearing When You Can’t Hear
A survey of more than 1,500 respondents with hearing loss found that while many look for and request accommodations, they are often not available—62 percent answered “seldom or never” when asked how often they can find accommodations.
Nurturing Self-Advocacy by Learning How to Speak Up
As self-advocates, we will speak up for ourselves and our peers, learn who supports us, where and how to access information, know our rights and responsibilities, make our own choices, and advocate for our group’s rights.
10 Ways to Develop Accessibility in the Workplace
Accessibility is making sure everyone—whether disabled or abled—has easy access around the workplace as well as its facilities. The concept of accessibility at work goes far beyond physical access and involves so much more.
FCC Announces Intent to Automate Phone Captions
By Kathi Mestayer
The Federal Communications Commission (FCC) recently announced in the Federal Register that it intends to allow telephone captions (IPCTS) to be 100 percent provided by automated speech-recognition (ASR) software. I wrote about how it's done currently by a human/software "team."
The change would save money by making the role of the human captioning assistants optional. But nobody knows what the effect would be on caption quality, as there are no current standards for accuracy or delay in telephone captioning provided under the Americans with Disabilities Act, and regulated by the FCC.
Underscoring that issue is the letter posted by a group of consumer groups, which states:
"The Commission is putting the cart before the horse by allowing ASR-based IP CTS services without developing standards and metrics for the provision of IP CTS to ensure that consumers receive robust service from all providers, regardless of the underlying technologies used to provide the service. Inaccurate and unreliable IP CTS service stand to substantially harm consumers who rely on them for communications with family, friends, employers, and commercial transactions and lack the means to qualitatively compare services in advance."
That document, available online, was filed by the Hearing Loss Association of America, Telecommunications for the Deaf and Hard of Hearing, Inc., National Association of the Deaf, and Gallaudet University’s Rehabilitation Engineering Research Center on Technology for the Deaf and Hard of Hearing.
The public comment period for this proposed change is open until Sept. 17, 2018. You can submit a formal comment at the top of the page in the Federal Register that announces the proposal.
Kathi Mestayer is a Hearing Health magazine staff writer.
Advancing Accessibility in the Audiology Profession
By Lauren McGrath
Born with a profound sensorineural hearing loss, Jessica Hoffman, Au.D., CCC-A, never believed she could become an audiologist. In fact, she didn’t consider the profession until her final year as a biopsychology undergraduate at Tufts University.
By then, Dr. Hoffman was the recipient of successful hearing loss intervention and treatment for two decades. Diagnosed at 13 months, she was fitted with hearing aids by age two, practiced speech and hearing at the New York League for the Hard of Hearing (today the Center for Hearing and Communication) until five, and learned American Sign Language (ASL) at 10. She pursued a mainstream education since preschool with daily visits from a teacher of the deaf. Dr. Hoffman received cochlear implants at ages 14 and 24, respectively and, in college and graduate school, enjoyed a variety of classroom accommodations including ASL interpreters, CART, C-Print, notetakers, and FM systems.
After Tufts, Dr. Hoffman worked as a lab technician at Massachusetts Eye and Ear as her interests in studying hearing began to grow. But she doubted her abilities to perform key tasks in audiology, like speech perception tests and listening checks with patients. After speaking with others in the field with hearing loss, she became less apprehensive. Engaging with mentors like Samuel Atcherson, Ph.D., and Suzanne Yoder, Au.D., who have greatly advanced opportunities for individuals with hearing loss in audiology, further cemented Dr. Hoffman’s self-confidence. In 2010, she completed her Doctor of Audiology from Northwestern University.
Today, Dr. Hoffman is happy to work with both children and adults at the ENT Faculty Practice/Westchester Cochlear Implant Program in Hawthorne, NY. She takes pride in helping her patients realize that they are not alone with hearing loss and that technology, like her own cochlear implants, can provide immense benefits to communication. Dr. Hoffman is motivated to help her patients understand that hearing loss does not define who one is and can be viewed as a gain rather than as a limitation.
Dr. Hoffman’s career is not exempt from challenges. Fortunate to receive accommodations as a child and young adult, she is disappointed by the tools that are missing in a field that serves those with hearing loss. Though she credits her own workplace as being very understanding, Dr. Hoffman points out the difficulties she experiences during team meetings and conversations with patients who speak English as a second language. She is grateful to have considerate colleagues who will repeat themselves as needed or offer to facilitate verbal communication with non-native English-speaking patients.
At audiology conferences, however, necessities like CART, FM systems, and/or interpreters are often lacking for professionals with hearing loss. Dr. Hoffman and others with hearing loss in the audiology field have petitioned to encourage accessibility at such events. She has had to take on the responsibility of finding CART vendors for conference organizers to ensure her own optimal listening experience. She reports being brushed off by meeting leaders and a sense of doubt in her abilities and those of her colleagues with hearing loss.
Dr. Hoffman also wishes to see greater accessibility in audiology offices nationwide, including recorded speech perception materials, captioning for videos or TV shows in the waiting room, and email exchanges with patients, rather than phone calls. She’d like all audiology staff to be well-versed in communicating with people with hearing loss and to have a strong understanding of the Americans with Disabilities Act (ADA) as it pertains to hearing loss. Dr. Hoffman also thinks facilities would benefit from hiring ASL interpreters or Cued Speech transliterators as needed. Her ideas would help professionals like her and patients alike.
Accommodations for people with hearing loss and other disabilities in academics, public sectors, and the workforce—audiology included—should be provided without question, says Dr. Hoffman, who has had the burden of reversing many people’s misconceptions about her capability to thrive independently in her career. “The self-advocacy never ends, but it has made me stronger and more confident in my own abilities as a deaf person. I am proud to have a hearing loss because it has shaped me into the person I am today.”
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Making Entertainment Relatable and Accessible for More
By C. Adrean Mejia
Films, plays, and television series have long served as platforms to create awareness of important topics that have otherwise been kept out of the spotlight. Hearing loss is one example of such a topic.
As an organization that seeks to inform the public about the prevalence, prevention, and treatment of hearing loss, Hearing Health Foundation (HHF) applauds the growing prioritization of this issue in entertainment. We are pleased to know that the number of films featuring characters with hearing loss—played by actors with hearing loss—has risen with the years, generating greater public awareness of the third most common health condition in the United States. Complementing this trend of an increased presence of hearing loss on screen is the introduction of recent legislation to make entertainment more accessible to viewers with hearing loss.
Actors and characters with hearing loss expand society’s understanding of the condition. Hearing loss empowers abilities, emotions, and experiences unlike those of people with typical hearing. Some recent works with characters with hearing loss include the following:
The Silent Child tells the story of a profoundly deaf four-year-old girl who is about to attend a mainstream school with minimal support—until a social worker teaches her American Sign Language (ASL). The film communicates the disappointing statistic that over 78% of deaf children attend mainstream school without accommodations. A final comment that states that the creators “hope this film contributes in the fight for sign language to be recognized in every school across the globe.”
Children of a Lesser God, a play written in 1979, made its Broadway debut last April. The piece focuses on the professional and romantic relationship between a deaf janitor and a typical hearing teacher and shows the contrasting worlds off sound and silence. To Sarah, the janitor, deafness is an identity, not a defect.
This Close is a TV series by two deaf writers and actors that narrates the true story of their lives. The show provides a close look of the everyday day life of two best friends, emphasizing their challenges and frustrations while highlighting the positive and beautiful things that their hearing loss brings to their existence.
HHF commends these and the artists behind similar works for the awareness their creations have generated. Likewise, the organization is proud to witness the introduction of new laws and procedures to make entertainment more accessible to the hearing loss community.
Credit: Naugatuck Patch
The American with Disabilities Act (ADA) first broke barriers by advocating for the requirement that all video program distributors close caption their TV shows. But it wasn’t until recently, with the help of technology, that these rules have expanded. On November 2016, the Final Rule on the ADA Title III was signed, requiring all American movie theaters to provide accessibility for captions. Large cinemas now offer assistive listening, closed captions, and descriptive audio.
Broadway, too, has made tremendous improvements. In 2016, the Theater Development Fund (TDF) and The Broadway League, launched www.theatreaccess.nyc, a website with information about tickets prices, dates and accommodations for theatergoers with disabilities. In addition, TDF now provides accessibility programs with open captioning and/or ASL at select Broadway performances.
Entertainment has made progress in becoming more inclusive for people with hearing loss since the implementation of these programs, but additional work is needed. Though mandating captioning at movie theaters represents great progress, other entertainment settings, including sports arenas and concert halls, must follow suit.
To optimize the listening experience for audience members with hearing loss, more must adopt the use of hearing loops, which transmit sound from a PA system to hearing aids and cochlear implants. In December 2017, the state of Minnesota passed a bill requiring hearing loops in public meeting spaces, taking after similar New York City legislation from earlier in 2017.
HHF looks forward to a day where no one must live with hearing loss. As long as hearing remains out of reach for tens of million Americans, fair accommodations are the most ethical choice.
Greatness Always Has a Price
By Morgan Leppla and Laura Friedman
Signed in 1990, the Americans with Disabilities Act (ADA) is the most contemporary federal legislation related to disabilities, outlining important workers’ rights and their employers’ obligations to provide reasonable accommodations. However, it does raise questions in regards to union contracts under the National Labor Relations Act (NLRA), which was passed in 1935 and protects workers’ rights to unionize, collectively bargain, and take action (e.g. strikes). Thus, portions of the NLRA and ADA conflict with each other, putting strain on union workers who need reasonable accommodations.
The ADA outlaws discrimination against qualified individuals with disabilities, stating that individuals must negotiate with employers for “reasonable accommodations.” On the other hand, the NLRA prohibits union members from negotiating individually. Once the ADA was passed in 1990, it outlawed any part of previously entered collective bargaining contracts that included discriminatory clauses. Additionally, an employer cannot use a collective bargaining agreement as a means to engage in discriminatory practices that are otherwise prohibited by the ADA.
The challenge for employers is balancing their dual obligations to comply with established collective bargaining arrangements while accommodating individual workplace needs.
Many union contacts contain seniority clauses, providing benefits based on how long union employees have been in their position. For example, an employee who is at a company for 10 years may choose their hours before the newest hire. However, if the newest hire has a disability, it may be necessary for them to pick their hours before the more senior worker as a reasonable accommodation. This violates the union contract and NLRA for two reasons: 1) it can be considered direct dealing with an employee, and 2) it overlooks the terms of the contract. Even so, this accommodation does not otherwise pose “undue hardship,” and therefore should be granted under the ADA.
NOT SO FAST: Firstly, the NLRA does not contain language that protects people with disabilities. Secondly, the ADA was meant to expand upon, not replace, the Rehabilitation Act of 1973, which prohibits discrimination against people with disabilities in federal hiring practices and requires affirmative action in hiring for federal agencies, programs that receive federal funding, federal contractors, and subcontractors. However, the ADA does not have an affirmative action requirement, so employers are no longer obligated to give applicants with disabilities preferential treatment throughout the recruitment or hiring process. Furthermore, ignoring the seniority clauses in collective bargaining agreements would be using affirmative action in the hiring of persons with disabilities, and therefore illegal, adding the web of confusion as to which legislation must employers comply with.
Other issues are related to privacy of medical records. In one instance, a union needed workers’ medical histories in order to meaningfully negotiate their contract, which is permitted by the NLRA but prohibited by the ADA. Due to lack of evidence, guidance, and clarity, the court had the parties settle. While in this particular instance the issue was put to bed, the inability to make a decision failed to set a precedent which could address future disputes.
This amounts to a murky legal landscape. While some of the language has been interpreted by courts, there is a lot employers and individuals need to navigate on their own. Such uncertainty and lack of clarity further hurts the disabled individual because they have to take extra strides to ensure that they receive reasonable accommodations and are not subjected to discrimination based on disability by either the terms of a collective bargaining agreement or the actual employer.
Have a personal experience with discrimination in the workplace or with negotiating reasonable accommodations with an employer?
Please share it with HHF by emailing info@hhf.org today!
FOOTNOTES:
Advocacy at Work
By Kathi Mestayer
Ever had a hard time hearing in the hospital? Or visited someone who did? You're in good company. Hospitals can be very noisy, with alarms, footsteps, noise from machines, televisions, and clanging carts and food trays. For starters.
And I would argue that the hospital is one of the most important places to hear things right. The two phrases "So, are you in any pain now?" and "You know what to do if you're in any pain, now?" can sound really, really similar to a person just out of surgery and who uses a cochlear implant.
In this actual situation, the patient—my father—answered, "Yes," which meant two very different things to each party. The nurse thought "yes" meant “Yes, I know what to do if I'm in pain," but what it really meant was, "Yes, I am in pain now." Over the course of 45 minutes, after multiple attempts by the patient to get help via the intercom system to contact the nurse, and the nurse using the intercom system to ask what the problem was, it became clear that:
He was now in a lot of pain.
The intercom system doesn't work for people who are very hearing impaired. He never heard a single word through the intercom system from the nurse's station, and was reduced to moaning louder and louder until help arrived, in person.
This is the kind of problem that the Department of Justice (DoJ) program called the Barrier-Free Healthcare Initiative is intent on addressing. The DoJ, which oversees compliance with Americans with Disabilities Act (ADA), has committed resources and attention to the important work of providing effective communication for patients with hearing loss in hospitals, pharmacies, rehab facilities, and doctors’ offices.
My home state, Virginia, has jumped on board with this initiative, and passed its own initiative to assist hospitals with ADA compliance. Signed by Governor Terry McAuliffe earlier this year, Chapter 113 reads as follows:
Be it enacted by the General Assembly of Virginia:
That the Department of Health shall (i) work with stakeholders to develop guidelines for hospitals to ensure that hospitals are complying with requirements of the Americans with Disabilities Act and that patients and family members with sensory disabilities are able to communicate effectively with healthcare providers and (ii) report on its progress in developing such guidelines to the General Assembly no later than December 1, 2015.
The bill would not have made it to the floor, much less the printer, had it not been for the efforts of Arva Priola, the outreach coordinator for the deaf and hard of hearing at the disAbility Resource Center in Fredericksburg, Virginia. Priola, who wears cochlear implants, saw the need firsthand from her experience in the recovery room. “I always direct the nurses to mark my cochlear implants so they are put into the correct ears. That’s also true for hearing aids. It allows us to use our hearing sense when we wake up from a procedure,” she says.
Virginia’s initiative is intended to help hospitals comply with the requirements of the ADA. Those requirements include (in layman's terms):
assessment of each patient's communication needs
provision of the technology or other assistance (for patients who are deaf, this is often ASL interpreters)
covering the costs, if any, of providing that assistance
Priola not only saw the need for such an effort by the state but also consulted with agencies and stakeholders, such as the Hearing Loss Association of America's Virginia Chapter, the Virginia School for the Deaf and Blind, Association for Late-Deafened Adults, the Virginia Association for the Deaf, and the Virginia Department for the Deaf and Hard of Hearing (where I serve on the advisory board). She then approached Delegate Robert "Bobby" Orrock (VIrginia House of Delegates) to sponsor the measure. He agreed.
The rest is history. Strong support (unanimous, in fact) was received in both legislative chambers, and the governor signed it in March. The ball is now in the Virginia Department of Health's court, since it is designated as the agency to make it happen (along with the stakeholders and cooperating agencies that will be involved in implementation).
It's a positive note, not only for Virginia and its governing bodies, but for demonstrating what we can do as advocates when we really put our minds, and energies, and focus, to work. And when we have a mover and shaker like Arva Priola.
The DoJ's ADA website is full of information about its national initiative. Click here to see some of its recent actions in enforcing the ADA for communications issues in all healthcare settings, not only hospitals.
Staff writer Kathi Mestayer serves on advisory boards for the Virginia Department for the Deaf and Hard of Hearing and the Greater Richmond, Virginia, chapter of the Hearing Loss Association of America. She writes about the science of how our brains make sense of sound at BeaconReader.com.
Communication Is Critical to Care
By Kathi Mestayer
I recently visited my father, who wears a cochlear implant, in a rehab facility, where he was recovering from surgery.
His room, right next to the nurses’ station, was pretty noisy. There was a constant array of beeps, rings, clanging equipment, and talk. I measured the noise level with my decibel meter smartphone app (AudioTools) and got a reading of around 65 dBA inside the room, about 10 feet from the door. That’s equivalent to normal conversation, but it could make it very difficult for a person with a cochlear implant to correctly understand a medical question.
The rehab center staff was well-meaning, attentive, and caring. But the level of awareness of communication problems for those with hearing loss was spotty.
No captioning phones (and no idea of whether they would work in the facility).
No idea of what a cochlear implant looked like.
No way to communicate in writing.
To be fair, that’s not unusual. Earlier this year, I visited my uncle in the hospital. He had had a hearing loss for years. Due to his Parkinson’s disease, he also had a hard time speaking. They were having difficulty getting him to agree to the doctor’s recommendation of a colonoscopy. He was under the mistaken impression that they were talking about a colostomy, and hesitant to agree. Fortunately, I had brought in a whiteboard and marker the day before. I wrote the words “Colonoscopy” and “Colostomy” in big letters on the board, and crossed out “Colostomy” with a big X. He took the write board and wrote “U Sure?” on it. “YES,” I said, nodded, and wrote on the board. He agreed to the procedure on the spot.
I recently became aware of a two-year-old Department of Justice (DoJ) program called the Barrier-Free Healthcare Initiative. The Department of Justice, which also oversees the Americans with Disabilities Act (ADA), has committed resources and attention to the important work of providing, among other things, effective communication for patients with hearing loss in hospitals, pharmacies, rehab facilities, and doctors’ offices.
Useful resources:
Click here to get the full scope of the Barrier-Free Healthcare Initiative.
The ADA’s primer on how to communicate effectively with people who have hearing loss.
And if you’re wondering whether the DoJ is making headway, read updates here including about the success the DoJ has had working with healthcare facilities to help them meet the ADA requirements.
Kathi Mestayer writes about workplace noise issues. Read her articles here: