Testimonial by Kay Tyberg Regarding Deafness and Hearing Loss

This excellent letter is written by my friend, Kay I had the pleasure of serving with Kay on the Pennsylvania Advisory Council for Hearing Loss Association of America. She is a joy to know and to work with. Though this is written as a letter, it was actually from her speech when she appeared before PA Governor Tom Corbett and Commissioners regarding long term care and hearing loss.

Kay kindly granted me permission to share this with you. She aptly demonstrated to the audience what it feels like to experience hearing loss and not have access to language, or what is going on. Kay goes on to articulately describe the challenges MILLIONS of us with deafness and hearing loss face each day.

May 31, 2014

Governor Tom Corbett

ATTN:  OLTL Policy

Long Term Care Commissioners

PO Box 8025

Harrisburg, PA  17105

RE:  Testimonial-HLA/LC, Tyberg

Ra-LTCCommission@pa.gov

Dear Governor Corbett & Commissioners:

I represent the thousands of elderly Pennsylvanians on behalf of the Hearing Loss Association of America as a deaf advocate, an educator, a peer mentor, and human services professional.

I am at the podium with the microphone.  Think about this scenario.  I am standing at the podium with the microphone without using my voice, but moving my lips saying the following…”Thank you Governor Corbett for funding the Long Term Care policy for Pennsylvanians, and I thank the commissioners for being present today to hear the voices of elderly individuals with diverse ability issues.”  The people in the audience and the commissioners are listening and moving forward trying to hear what I am saying but are stumped because they are not hearing anything.  People are thinking there is something wrong with the microphone system.  However, I begin to use my voice repeating what I just said in quotes.  People realized there was nothing wrong with the microphone system at all, but the fear and facial gestures of concern has gone away.  Everyone has now witnessed firsthand the world of silence, and the unknown whether you are young, middle-aged, or an elderly later-in-life individual with a hearing loss.  Think about how it felt when there was no communication.

Let me ask these “How would you feel” questions:

• If as a grandparent attending your grandchild’s school play, orchestra or chorus concert, or graduation and you are unable to hear anything being said.
• If you attend a Board of Education meeting unable to follow the dialogue or participate because of the seating arrangements and no accommodations.
• If you participate in a training session or educational presentation in your community and unable to comprehend anyone as they speak.
• If you attend a social event unable to hear or follow the conversations and dialogue, because you are unable to hear them.
• If you are driving at night in a vehicle, and it is pitch black outside and you cannot see nor hear the person trying to have a conversation with you in the vehicle.
• If you attend a township meeting as a taxpayer to know what is going on and provide community input and you cannot participate.
• If you are unable to participate on a Board of Directors meeting because you are unable to hear because they officers decide at the last minute to use the speaker phone which you cannot understand, although your expertise would be a valuable resource.
• If you decide not to apply for a job you are highly qualified for but you are unable to purchase a hearing aid or cochlear implant to hear over the telephone, but the company refuses to modify the job description for you to work there.
• You stop attending church services which has been a major part of your life because you no longer can hear the pastor or lay people speaking during services.
• If you are unable to go to movie theaters and enjoy the feature films or community plays being performed because you cannot afford to purchase hearing aids.
• If family members and children live out of state and communication with the stops completely because you cannot purchase hearing aids to be able to hear them on the telephone or have no access to a computer.
• If you are unable to go through a drive-thru window at any fast food restaurant like everyone else because you are unable to hear the person on the speaker.
• If you are unable to communicate effectively with family members at home without continuous aggravation and frustration due to misunderstanding or repeating themselves.
• If you are at a doctor’s office and unable to understand what the nurses and doctors is explaining to you about your medical condition.
• If in an emergency or disaster situation in a shopping area where flooding has almost reached the top of the levy and an unmarked police car with a police officer inside the car announces on his speaker to evacuate the area immediately.  You do not hear this or see anything out of the norm except you observe people are rushing out of stores and not sure what’s happening.  This causing fear and panic on your part because you did not hear this audio announcement.
• If a person cannot hear someone knocking on their front door because they cannot hear.

These are only a handful of examples people with hearing loss face almost daily.  This also illustrates how our technology audio savvy society overlooks the needs of individuals with hearing loss.  Grant you technology has done wonders for hearing loss with advanced assistive technology devices, e-mail access, cell phone access through text messaging, and relay services.  Hearing aids, and all specialized assistive technology devices are paid by the consumer.  Insurances are not there to help us.  The exception to the rule is the use of PATF, veterans getting assistance through the VA, and if a person is working getting assistances from the vocational rehabilitation program.

I emphasize medical health insurance and durable medical equipment under Social Security does not cover the cost of hearing aid(s) ranging from $800 to $4,000 each.  There are 39 million Americans accounted for by CDC with hearing loss.  I know this figure does not really touch on the reality of the true statistics, because so many go without hearing aids due to financial hardship.  In our area alone, 17% of the elderly have a hearing loss.  This has become quite an issue where I work as an AmeriCorp member at the Office of Aging where resources are not available for people with hearing loss.  I see this all the time!!!!  There is not a day I am out in the community where I don’t meet an individual with a hearing loss or wears a hearing aid.  I am meeting more elderly on fixed incomes and no family members at all with hearing loss.

There are two words I am “hearing” consistently in this meeting today…”communication and safety”.  Our inability to hear creates communication barriers.  Once an individual realizes they have a hearing loss and doesn’t know where to go or who to turn to for resources and financial assistance the enormous challenge is just beginning in their lives.  What do I mean?  It is not just about the hearing loss itself, but the person begins to withdraw from social events or family interactions.  What is worse is the frustration, aggravation, anger, anxiety, and onset of depression.  This obvious leads to more medical issues than the hearing loss alone and becomes a costly problem.

Hearing loss like dementia, Alzheimer’s disease, heart disease, and other major illnesses our elderly Pennsylvania residents endure need adequate medical attention.  However, I have witnessed firsthand sadly at meetings such as this one how hearing loss tends to take a back seat when it is just as important as the diseases we mentioned.  Are nursing home and other facilities adequate for elderly with hearing loss – no?  Hearing loss research shows these individuals suffer from dementia.  Americans have worked all their lives to survive and raise their family for future generations.  These same Pennsylvanians have paid their taxes and helped the community they lived in.  As an individual in the human services field with a hearing loss our state needs to assist those with hearing loss for elderly assistive living quarters and medical devices.  The baby boomer generation is not willing to sit back in their rocking chair - - - we are doers beyond retirement age.

As a peer mentor for individuals with hearing loss, individuals share their frustrations and discontent with agencies and services.  For example, many fliers and brochures from agencies have no other alternative contact to the agency except by phone number.  How does the deaf elderly person participate or get help?  People are asking for help and HLAA directs people to the right resources whether it is about coping and adjusting with hearing loss or how to purchase a hearing aid.  The HLAA can guide individuals with resources, education, support, and information so people can sustain a better quality of life.

Our Hearing Loss Association of America-Pennsylvania Advisory Council is willing to provide staff/personnel training about hearing loss to agencies and interested businesses.  We also work closely with the ODHH.  This will break down the myths and communication barriers.  It is my hope the Long Term Care Commission will “hear” our voices which has been neglected for so long.

I thank the commissioners for being here at Pennsylvania College of Technology and allowing me to provide this testimony about a critical problem.

Respectfully,

Kay Tyberg

President of HLAA-LCC

Advisory Council Member of HLAA-PA

Certified Peer Mentor for Hearing Loss

Sign Language Instructor

Deaf Advocate