By Sheila C. Serup
As we lead into as we lead into May, Better Speech and Hearing Month, I wish to focus on two important aspects of accessibility: Using Self-Advocacy and Technology for Hearing Accessibility in Health Care, and the community consultation work underway towards a potential new Alberta Accessibility Legislation.
Combining Self-Advocacy and Technology for Hearing Accessibility in Health Care.
Over 40 years ago, CHHA was founded as a national association to advocate for the rights of persons with hearing loss. The hopes, dreams and hard work of individuals across Canada with hearing loss resulted in the formation of a consumer, bilingual self-help organization, by people with hearing loss for people with hearing loss.
Fast forward to today, Canadians with hearing loss are using technology to self-advocate effectively to access services and programs. The following provides a snapshot of what services are available across the country, and tips on how to self-advocate.
One of the original aims of CHHA was to encourage people with hearing loss to take individual and collective responsibility for their growth and development. Another aim, which is still very relevant today, is for CHHA members to promote the development of accessibility to technical aids and to other services and facilities for the hard of hearing.
Using self-advocacy and technology becomes vital in health care, particularly in hospitals and residences. All Canadians, at one point or another in their life journey, will experience a hospital visit or stay. Across the country, from developed urban cities to rural remote regions, hospitals provide a continuum of care. Accessibility services for Canadians with hearing loss range vary across provinces and territories. Unfortunately, there is a wide disparity in the availability of sign language, real time captioning (Communication Access Realtime Translation – CART) and other assistive services for Canadian with hearing loss who need health care. Hence the need for self-advocacy.
Numerous CHHA networks are proactive in providing resources and tools for Canadians with hearing loss to self-advocate.
In Alberta, CHHA-Edmonton delivers its Hearing Healthcare kits by way of a
presentation to long term care facilities, including residents and staff in Edmonton.
“The kit contains pertinent information for the residents to help empower them when they need to go to a hospital,” describes Cindy Gordon, Program Director for CHHA Edmonton. The kits include handouts and tools for patients with hearing loss to communicate effectively with hospital staff. With these, “their stay in hospital is more comfortable,” she notes. The Hearing Healthcare Kits are funded by a federal New Horizons for Seniors Program grant.
In Calgary, CHHA-Calgary provides, on request, captioning services if needed for medical appointments. As well members of the University of Calgary and Alberta Health Services are looking into how health services could better support hard of hearing patients.
Proper two-way communication between healthcare providers and patients is essential for healthcare but is not always accessible for people with hearing loss. Certain settings, such as the hospital, create even more accessibility barriers for people with hearing loss due to the loud noise and stressful environment. Although there are many tools and strategies that improve communication access for people with hearing loss, they are not being used to their full potential in hospitals or other healthcare facilities.
The goal of the team is to learn more about what changes are needed to make health services more accessible for hard of hearing patients and to implement them into practice. First, they will meet with people with hearing loss and support persons to create a list of ideas. These could be speech-to-text apps, communication boards, microphones, or strategies such as speaking slowly, rephrasing, repeating, and lipreading. Next, they will meet with healthcare providers and health system leaders to implement these changes into health services across Alberta. The principal investigator is Dr. Marcello Tonelli. For more information about the project or to learn how you can get involved, please contact Meg Lunney: mlunney@ucalgary.ca
In Manitoba, local CHHA members and volunteers implemented a major project to develop and introduce its Hard of Hearing Hospital Kits (HHHK) to improve the health and well-being of hard of hearing and defeated patients. CHHA-Manitoba, in partnership with the Winnipeg Health Sciences Centre and funded by the Winnipeg Foundation, developed a kit to be provided to 1,000 hospital patients. The response of hospital staff to both the training and the actual kits was exceptional, notes CHHA-Manitoba.
In Newfoundland and Labrador, executive director Leon Mills notes the importance of the issue but recognizes it’s a challenging one. “We have made several efforts over the years to have the local health care system adopt better accessibility options for clients and training for staff,” says Leon Mills. Several years ago, CHHA-Newfoundland and Labrador introduced a new Health Care Facility Accessibility Assessment Program to ensure that health facilities provide a healthy hearing environment. It offered training sessions on hearing loss issues, the effects of hearing loss, coping strategies and training on the use of hearing assistive technology.
In St. John’s, registered nurse Leanna Rowe, who was born deaf and has a cochlear implant, says that from her experience as a nurse as well as an individual who lives with hearing loss, she finds accessibility in the hospital where she works, in general, is lacking for everyone in all aspects. “It has been a slow progression to improvement in some respects, but it still has a long way to go.”
In Nova Scotia, for example, if a patient who is HOH is admitted, a bracelet is applied or signage for the patient, and it will be identified on the patient’s chart more visibly. “In NL, it can be identified on their chart but not in a place that easily visible and a nurse needs to input this which means the onus is on the patient to inform the nurse,” Leanna explains. “We know this is not always the case as people opt to not disclose, nor encouraged to disclose or possibly not even aware they have a hearing loss. For individuals who are deaf, interpreting services are offered and nurses can connect to this service through a local non-profit group that represents the Deaf community. This comes with unique challenges as this is interpreter dependent, doctors come and go without waiting for interpreters to arrive and can be often difficult to arrange.”
“I find people with hearing loss of varying degrees who are admitted to hospital units, by and large, often rely on family members or friends to ensure communication, proper consent (informed consent which is a grey area when looking after patients with hearing loss) to tests and procedures and just a general overall awareness of what’s going on,” she says.
Going forward, Leanna believes “there needs to be a lot more information for health care providers in general on aspects of good communication in general but, moreover, how to communicate specifically with people with hearing loss. There also needs to be a means in which it is easier to screen, identify or encourage/empower individuals to speak up and be forthcoming about their hearing loss so they can have an improved experience.”
For her Master of Nursing degree, Leanna developed a comprehensive toolkit consisting of five online educational hearing loss modules and a physical resource unit to address the learning needs of nurses and support nurses in their practice. The toolkit is intended for nurses to enhance their knowledge and ability to care for patients with hearing loss.
In British Columbia, CHHA-BC launched in August 2021 its Hearing Access Health Kit with three publications. The Hearing Health Access kit includes communications cards, blue stickers with the international symbol for hearing access for use on gowns, charts, wrist strap and intercom buttons at the ward reception desks. The Hearing Access Health Guide for People with hearing loss includes a myriad of self-advocacy and communication tips, including the importance of self-identification, reminders and making requests for accommodations and services.
One of the writers of the Hearing Access Health Kit, Dr. Marilyn Dahl, stresses that the most important thing for a person with hearing loss is “to be well prepared and proactive in telling the care providers that they have a hearing problem, and what is needed for facilitative communication.”
Dr. Dahl encourages people with hearing loss to install a speech-to-text app on their cell phone. “Some apps charge a monthly fee. I use NALSCRIBE which is free,” she says.
The growth and development of mobile devices is a boon for Canadians with hearing loss. Not only can Canadians with hearing loss use their own devices in hospital or health care facilities (check with each hospital for permission), but more and more health care professionals are using mobile tablets, cell phones, and Smart phones which have speech-to-text apps installed. The accessibility and availability of digital devices and apps has resulted in an organic growth in inclusive communication.
“I know of several doctors (in Vancouver) who will type their remarks and questions onto their own computer for the patient to read,” says Dr. Dahl. “Another has a speech-to-text app on his phone, which he utilizes. More than one ambulance attendant carries a tablet for speech-to text-talk. But these are just a few, and it would be helpful if similar strategies were utilized across the spectrum of healthcare delivery.”
Self-Advocacy Performs Vital Functions
Self-advocacy is important as it performs two vital functions. Firstly, self-advocacy enables people with a hearing loss to facilitate and create a customized communications platform that works for themselves. Secondly, self-advocacy is a very effective educational and awareness-building tool, and the act of self-advocacy can equal or better access for others once their tools and resources are shared.
Registered nurse Leanna Rowe recommends one way a person who is hard of hearing can advocate in the hospital setting “is to bring a family member or friend they are comfortable with sharing health and medical information, bringing their own adaptive hearing devices such as an FM or Roger pen or hearing aids/cochlear implant and asking that health care staff use it.”
She also suggests that patients who are hard of hearing ask to have a little sign made for their bed space. “Most nurses would be happy to print a simple sign that says ‘Patient has a hearing loss’ so they don’t have to explain themselves to every single individual they meet. This can range from someone coming in to draw bloodwork, to the cleaner, to the porter, to the nurse to the doctor, etc. This might also benefit them if they are sleeping and someone is calling out their name.”
Patients “can also ask to see things in writing so having a health care provider write or type something out or even use captioning on their own personal cellphones! There are lots of apps for that now and I have used that with patients in the past if I needed to,” describes Leanna.
The CHHA-BC website also includes, as part of the Hearing Access Health Kit, a form called the Client Hearing Access Plan form in which an individual with a hearing loss can describe their communications challenges and needs.
Recently the BC Government has now made available CART services, through Wavefront, for medical appointments, similar to the availability of ASL interpreters for appointments.
Across Canada, there is information available on accessibility services. Please ask your medical provider for the services you require for your health care needs, or have a family member or friend assist you in your self-advocacy for your health care.
Details on the above are available at CHHA-Edmonton https://www.chha-ed.com/ , CHHA-Manitoba at https://chha-mb.ca/access/hard-of-hearing-hospital-kits/ and at CHHA-BC (https://chha-bc.org/hearing-access-health-kit/)
The Potential for Alberta Accessibility Legislation Being Explored
In Alberta, the Office for the Advocate for Persons with Disabilities is currently exploring the potential for future accessibility legislation. Online focus groups have been held (on Zoom) to explore accessibility across the province. At this time, the work of the Advocate is exploratory, and a report will be made to the Government of Alberta.
Advocate Greg McMeekin noted that an Accessibility Legislation working group has been formed, and research and engagement is in progress.
The work underway in Alberta follows on the heels of the Accessible BC Act (2021), the federal Accessible Canada Act (Bill C-81) enacted in 2019, the Nova Scotia Accessibility Act (2017), The Accessibility for Manitobans Act (2013) and the Accessibility for Ontarians with Disabilities Act (2005).
For further details or to share your thoughts, ideas, and comments on self-advocacy in health care settings, please contact me at sheila.serup@gmail.com