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:

  1. He was now in a lot of pain.

  1. 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

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