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By Maggie Casteel, MS, CRC, LPC

Maggie is a late-deafened adult and long-time member of the Hearing Loss Association of America. Maggie is a passionate advocate for assistive technology, inclusion and universal access. She currently works at the VA Pittsburgh Health System as a Vocational Rehabilitation Specialist.

Reminders of the ongoing War on Terrorism are almost subtle compared to the prolific ‘noise’ surrounding the Vietnam Era. But Warriors are returning every day with intense needs. They deserve to come home to the peace they have fought to protect. Unfortunately, as so many of us know, there is little peace for a person learning to live with tinnitus and/or hearing loss without support, education, understanding and technology.

For the first time in many of our lives, we as a community have the unique experience, training and ability to make a difference. Our call to action becomes louder and stronger with each day.  We must respond as a community and begin today to be the catalysts for the re-integration of countless service men and women with service related, acquired tinnitus and hearing loss. We can bring an invaluable contribution to help them find peace.

When loud becomes too loud most of us have the opportunity to either escape the cause of the noise or wear hearing protection, not so for countless service men and women.  Although all branches of military service are aware and constantly striving to protect the hearing of our service members, often the choices are not feasible. Soldiers depend on their ears for information and security. As a result, Hearing Damage is the number one disability in the war on terrorism, according to the Department of Veterans Affairs (VA). Some experts say it could take decades before the true toll becomes clear. Nearly 70,000 of the more than 1.3 million troops who served in the two war zones, Afghanistan and Iraq, are collecting disability for tinnitus.  What’s more, more than 58,000 veterans are on disability for hearing loss, according to the VA.

The National Institute for Occupational Safety and Health (NIOSH) reports that exposure to any sound above 85 decibels may cause hearing loss. Your hair dryer or power mower is commonly measured at 90 decibels, a jet engine take-off at 140.  Service men and women can be exposed to sound levels of much greater magnitude – heavy artillery, rockets, battle tanks, aircrafts and ships are part of their everyday listening environment. An F-16 fighter jet can generate over 150 decibels of noise at take off; an M-16 rifle can create up to 157 decibels; a shotgun blast can register at 170 decibels; and roadside bombs can start at 183 decibels. These soldiers don’t have the luxury of excusing themselves during combat to put on hearing protection.

Historically, wars bring medical innovation, better prosthetics and technological advances in rehabilitation. This war is no exception. We will all benefit from state-of-the art research in hearing assistive technology developed to mitigate tinnitus and remediate hearing loss for our service members. However, the greatest goal in rehabilitation is re-integration into the community, coming home. These men and women will be well cared for by the VA, but the VA is not home.

If you are born with a disability, or become disabled in some way when you are young, you have the advantage of understanding your needs, developing tools and accommodations that grow with you and your life. You are consistently identified as a Person with a Disability requiring specific accommodations. You have control over your own level of empowerment and autonomy.

If you acquire a disability as an adult you suddenly become a member of a club you never wanted to join, and further, you don’t know the bylaws! Returning veterans with tinnitus and/or hearing loss, with or without physical injuries, face a circuitous journey through a puzzle of support systems. As persons with invisible disabilities they struggle with disclosure issues and exaggerated denial, but as soldiers they cling to a military culture that provided them a clear path with designated tasks and outcomes. In short, they don’t know how to be disabled. It is the single most important adjustment they face.  For those of us who serve veterans, it is the quintessential challenge for returning these veterans to an acceptable quality of life that can include re-integrating into the workforce and community. For those of us living with hearing loss it is a call to action.

This veteran has many deserved entitlements, but he or she is also entitled to the same rights as every other Person with Disability – “Nothing About Us, Without Us.”  Without the ability to self-advocate, without the awareness of appropriate and legal environmental accommodation and assistive technology, this soldier is disempowered and handicapped not by a disability, but by a lack of awareness and support.

The ultimate goal for any person in rehabilitation includes educating the individual and his/her family about how to remain independent in all environments, how to access support groups, how to acquire and utilize technology to remediate identified and anticipated needs to achieve maximum functionality, inclusion, re-integration into the community, school and work – going home. Helping the warriors who fight the Global War on Terrorism requires an active connection between the veteran and the community. But how do we make this connection?

This is where our personal and cumulative experience living with hearing loss will help. We can bring solace, camaraderie, inclusion, support, solutions and true empathy. It’s simple; we can begin today, right now and make it our mission to welcome veterans and their families into the hearing loss community. Challenge yourselves to find ways to reach out to these veterans. Commit yourselves to being the part of the solution.

I’ve started a list of challenges for veterans with hearing loss. I challenge you to add to it. Identify an issue and resolve to find ways to make the hearing loss community a peaceful way home for our veterans.

• Denial: Lead by example. If ever there was a good reason for you to make your own return from that River in Egypt it’s now! How can we expect veterans to disclose if we are not comfortable doing so? There is no time for shame and stigma concerning hearing loss in any of our lives. Veterans need our support now, and they need to be able to identify us in order to access that support.
• Fear: My first emotional reaction to my hearing loss was sheer terror.” How can I resume my life now that I can’t hear? How can I re-connect with my spouse, my children, my parents and friends? They can’t possibly understand what this is like. I look the same; they think I’m still me.” Make sure that veteran and his /her families don’t feel alone in their journey through hearing loss. Have a special picnic in a quiet place to begin to introduce veterans with newly acquired hearing loss and their families to alternate forms of socialization that allows for attention to communications challenges. Give them a place and a chance to be in a place that’s safe and comfortable.

Your turn!

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There are obvious challenges for a deaf person in regard to communication with others, but these are especially difficult when dealing with healthcare professionals.  Thus the use of assistive technology is especially effective in ensuring both patient and healthcare professional are understood and important information is relayed.  There are several methods which can be utilized:  email, fax, Video Relay Service (VRS), Relay service (phone with third person), and Video Phone (VP).

I had a bad experience when in the maternity ward after delivering my second son.  The nurses had a shift change, and it was obvious they had not communicated with each other as to any “special needs” of their patients.  The new shift did not know I was deaf.  I was pushing the call button over and over for some help.  Their response was to give me a sleeping pill.  I was horrified the next day when I realized I had not breastfed my son overnight.  There was no special technology needed to relay the information that I was deaf.  All they needed to do was write on the board “deaf” along with other critical information such as allergies, etc.  It is crucial to make sure there is no misunderstanding or lack of communication, especially in more critical situations.  This is why I also believe one of the first questions a deaf person should be asked when admitted to a hospital is whether they require an interpreter.  I also believe hospitals should have an interpreter available on site 24 hours a day.

In dealing with day to day healthcare communication issues, however, technology is becoming even more important.  For example, one time while using the Relay service to call a doctor’s office, I sat on hold for 30 minutes.  Frustrated, I ended up sending them a fax stating I had been waiting for over 30 minutes and since it was taking too much time to use Relay to communicate, asked if they would feel more comfortable using the fax.  To my surprise, they immediately replied to me via fax.  I have found this an effective way of relaying details of a prescription, a diagnosis, an explanation, lab results, etc. in a concrete form.  Likewise if a patient has any questions, they can just write them down and submit them without chance of getting lost in translation of a third party.  Just like fax, email and text messaging can also be effective ways of communicating details between deaf people and healthcare providers.

I find VRS or RELAY service to be tricky because of the third party aspect.  Hence the reason I prefer fax, email and texting.  With Relay, most deaf people have their own specially designated phone number associated with the system which allows a doctor or nurse, etc., to call and leave a message through an operator/voicemail.   Unfortunately, messages are not always all encompassing, especially if the healthcare professional does not believe they are leaving the message directly with the person they are trying to contact.  Privacy issues sometimes get in the way.  However, if the deaf person is aware that someone is trying to call, they can try to carry on a conversation on a mobile device such as the Blackberry or Sidekick.  This can be tough though, especially if they are driving.

VRS, however, allows someone who uses sign language to communicate via video with a certified interpreter through the internet.  The interpreter will voice or relay the messages or conversation over the phone to the hearing party.  By using sign language via video, a deaf caller is also able to see expressions and cues.  This is definitely something lacking in the use of TTY or Relay and other third party devices.  This might be a deaf person’s most direct way to communicate with another party.  At least the opportunity exists to effectively translate the tone of a conversation which is otherwise lost.

Perhaps the best suggestion is that all doctors, nurses and other healthcare professionals should go for training to help them understand how to care for their deaf patients better.  It could be a requirement such as CPR certification.  It would certainly help bridge the divide between the hearing healthcare community and the deaf population, especially since there are so many different communication tools now utilized by various people in the deaf community.  All avenues should be understood and considered in what will work best for THEIR patient.

Alyson Raphel
11/13/2009