Accessibility Tools and Gaps:
Deaf and Hard of Hearing Consumers

Cheryl Heppner

Executive Director,
Northern Virginia Resource Center for Deaf and Hard of Hearing Persons

I am the executive director of the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons (NVRC).  It’s a non-profit organization serving deaf and hard of hearing persons primarily in the Northern Virginia Metro area, which has roughly 190,000 deaf and hard of hearing people.  Our Center learned early on that we cannot solve a lot of the problems in our community without working on the regional, state, and national levels, so our advocacy activities and education program sometimes go nationwide.

This past year we’ve become part of what’s called the CEPIN project – Community Emergency Preparedness Information Network.  This is through a grant from the Department of Homeland Security to Telecommunications for the Deaf, Inc. (TDI)  We are one of four regional centers across the United States who have this grant.  Our region, which starts in Maryland and goes down to Florida, covers the terrorism hot spot to the hurricane alley. 

At Northern Virginia Resource Center, I started collecting information on 9/11 about people impacted in our area, which was particularly affected because the Pentagon is located in our region.  I felt it was important to capture the stories I was hearing.  I also participate in a national coalition called the Deaf and Hard of Hearing Consumer Advocacy Network (DHHCAN).  We have 16 national organizations of, by, and for deaf and hard of hearing persons in that organization, and I represent the international Association of Late-Deafened Adults.

I worked both nationally with this coalition and regionally with my center to collect information from all over the country about experiences of people during 9/11, and those experiences were published with recommendations in December 2004 in a report with the title: Emergency Preparedness and Emergency Communication Access, Lessons Learned Since 9/11 and Recommendations.  (PDF Link )

There is much more information on my slides than I can cover today in my remarks.  I hope that you will take the time to look at it later (link to slides), because I have some good additional information there.

Now, back to the report.  One major finding in that report was that the current emergency communication system for deaf and hard of hearing persons got a failing grade.  We believe that communication is a top priority because deaf and hard of hearing people need to know when there is an emergency, how they can protect themselves, and what to do to access information in the aftermath of an emergency.

I would like to talk about some of the tools and gaps in the communication network we have now.  First, I’m going to cover television, because one of the things that we’ve learned from our studies is that many deaf and hearing persons, when they know there is an emergency -- because they’ve received notification -- will first turn on their television to try to find out more.

The Federal Communications Commission requires visual access to televised emergency information, with "emergency" being defined as anything that affects life, health, safety, or property. 

So far since this ruling went into effect, three FCC actions were taken against TV stations in California related to wildfires, here in this area due to a tornado, and in Florida from hurricanes.  In all three instances, these stations were not providing information that was needed. 

Television

Something that we learned from both hurricanes Katrina and Rita  is that information was not provided on television and given to the people when they needed it.  There is a need for real-time captioning for all news programs because many of the news programs were providing information about the storm’s course, evacuation plans, and other crucial information.   Information available through captions was very fragmented, and it was difficult to follow.  Often the captions blocked other information on the screen -- text or something else informative.  And the other texts and crawls would sometimes block captions.

We’ve learned that many times the local television stations did not have captioning at all.  We also learned , just as we did after 9//11, that people who subscribed to cable had much better access to information than people who did not. This is because many times the text coverage (captioning) of news about emergencies in their area was not available through the local stations, but the national networks, which had a broader coverage, did have captions. 

We also learned that people who have limited reading skills really needed information in sign language.  We know of one couple in New Orleans that was impacted during the hurricane because they saw the captions but didn’t really understand the urgency of evacuating.  And we’ve also learned of press conferences that were televised but the sign language interpreter was cut off the screen. 

Among the other gaps that we have found from experiences with television is the need for really good caption quality and monitoring, by a, skilled, accurate captioner. There may be too many errors in real-time captioning to provide accurate information in emergency. Right now Congressional funding is under consideration for a program to train more captioners. 

We also have learned that we have an obstacle in the migration of all of the things like phone, Internet, and TV to wireless handheld devices, because we don’t have the same regulations covering them to require that they be able to provide captioning. 

There’s a television that was created with something called the RCA Alert Guard.  This gives a wonderful way of knowing about an emergency even while you might be watching a video or a DVD. It will display the emergency alert from NOAA Weather Radio even if the TV is off or if you are not watching TV. But here is another gap:  It’s in limited supply, and there is no other option available like it.

One of the things that really has hurt us in the past is that those great battery-operated televisions that are designed to be small and portable are often not covered by regulations requiring caption decoder capability because the screen is less than the 13" covered by regulations.  We know of only one battery-operated TV with caption capability at this point, and it’s a Toshiba. 

There’s also a problem with readability of captions for people who have visual impairments.  The captions of most televisions don’t offer flexibility with the choice of font, its size, or its color.

There is an additional issue of too much data going on onscreen now.  Not only do you have closed captions to contend with, but you could have a busy screen with all kinds of crawls.  It’s difficult for someone to know what information is important to pay attention to. 

And this also brings up the issue that many televisions do not have the ability to always save the caption setting, so that when you turn the TV off and turn it back on, the captions are always there.  Particularly for people who don’t use captions everyday, there needs to be the ability to have, just at the click of a button, those captions come up so that you can catch important emergency information. 

The issue of digital TV is also a challenge for us.  The Federal Communications Commission set a transition to DTV for December 31, 2007 and analog programs are to stop.  We know that Congress is now addressing this and trying to set an extension of the deadline. 

There is a whole long list of captioning problems with digital television.  I will not cover them all.  They’re in your handout.  But I will say this:  With the digital television, we’re basically back to where we started when we had the very first decoders in televisions. When you buy a digital television, you have people who don’t know the equipment.  They don’t know how to demonstrate it.  You have people that don’t know how to activate the captions.  There are two good sources of information which you will find in your handout. 

Also with television we have the emergency alert system, called EAS for short.  Basically, this is a system that takes over the airwaves to broadcast an emergency message.  It is intended for national emergencies, although it’s never been used for that, but it is used by many state and local officials for severe weather and other emergencies.  In states and localities where it’s never or rarely been used, it’s impossible for us to know as deaf or hard of hearing persons whether it will really do what it’s intended to do. 

Radio

Moving on to NOAA Weather Radio, I will not cover this because I know that Ken Putkovich will talk a great deal more about it.  But this is a very reliable service which one may hope will soon be improved.  And I’ve also listed some of the limitations on the slides. 

So now on to basic radio.  Many of you know, if you follow the emergency management instructions, one of the first things they tell you is that when there is an emergency, turn on the radio.  That does not work for most deaf and hard of hearing people with any kind of moderate or severe hearing loss.  And there is a great, great need for battery-powered radios with text capability so that you can read the information.

During Katrina, radio was the only source of information for many people who were able to pick up the broadcasts that were available.  And, of course, that didn’t help people with hearing loss unable to access radio information.

We very much need to develop a radio data system in which text is sent over a FM radio signal.  I believe that other speakers will talk more about this.  But it’s of particular interest to us as deaf and hard of hearing persons because right now when we’re driving our cars, we have no real access to information with emergency messages.  And if is possible to use the display on our car radio, that would be wonderful.  We’re finding good data on displays like that in the Toyota Prius. 

Telephone

Right now we have landline and wireless phones, and Voice Over Internet Protocol.  We also have telecommunications relay services.  But there are so many flavors of relay services.  You have the traditional TTY-to-voice.  You have the voice carry over.  You have the Internet Protocol relay, and the video relay services, and the captioned telephone services.

And most of them have had some gaps.  One of the gaps that we know fairly well is that while there are many choices in wireless telephones, some are hearing-aid compatible, and some are not.  Those hearing aid compatible phones are starting to be available, but they are still in limited supply, and people with hearing loss have got to be educated and informed to make good decisions. 

With TTYs, both the portable and non-portable text telephone devices, many consumers who traditionally used them are now migrating to using wireless devices.  These wireless devices are not always going to be an option in an emergency.  But we also learned during Katrina, again, that there is an issue of battery life.  Most of our TTYs have very limited battery life.  The phone service may still be available, but the battery will run out if there is no power.  And that happened to at least one individual that we know of.  He was able to make calls early in the aftermath of Katrina, but then his battery went out and he was stuck. 

This is not just an issue for TTYs, but also most specialized equipment like amplified phones and captioned phones, which do not run just from a phone line.  They must have electricity. 

Internet-based relay services, which include what we call IP Relay and video relay service (VRS) have grown phenomenally in the last couple of years. But they cannot handle emergency (9-1-1 calls.  Captioned telephone, also called CapTel, can do emergency calls, but it, too, has the issue of battery life.  We will hear more about the Telecommunication Service Priority restoration from other speakers.  TSP gets relay services back in operation in emergencies. 

Hamilton Relay, as an example, has a state contract to provide relay services in Louisiana, and to be sure that they had emergency power sources in place before the hurricane.  They did a really remarkable job of keeping things going.

A new issue that we are still learning about is that of technology called reverse 9-1-1.  This works the opposite of 9-1-1 where you call to report an emergency.  Instead, the call comes to inform you when there is an emergency.  They call it blast, where the emergency message goes to many, many phones at the same time.  Reverse 9-1-1 can call TTYs, but only if your community buys that feature as part of its software. 

Anyone with hearing loss will tell you the importance of talking clearly over the phone to be able to catch the information, so it’s important that the people using these systems understand that that the message has to be paced well. We also find that some communities using this system have planned to provide some additional information in an emergency, and they’ll give you a telephone number that you can call for more information.  And in one local community we’ve discovered that that phone number that you call for additional information has a voice menu system, which is terrible for people with hearing loss to navigate.

We’re still finding out things everyday with the reverse 9-1-1 system.  One drawback is you will only get a call if the phone number is listed.  If you have an unlisted phone, you need to contact your emergency management center and let them know to put you on the list. 

We’re now seeing Voice Over Internet Protocol telephone take off.  And, again, with limited ability for it to handle emergency calls.  Many consumers use it with cordless phones, which may or may not be hearing-aid compatible. 

Another lesson that we learned related to the telephone during Katrina was that in many cases shelters had staff with no knowledge of, or plans to provide, telephones that were accessible.  And we had volunteers from businesses who came to try to offer those services, but people running the shelters were very resistant to it.  So there is a great need for more education and understanding of that issue. 

And finally, we found during Katrina was that many people were temporarily placed in hotels, which did not necessarily have accessible telephones for them to make or receive calls.

Wireless text

Text alerts have become a very important resource in emergencies.  There is now a variety of local text alerts free or for a fee.  Most can be sent to a computer, a pager, a personal device, a cell phone, and many times you are allowed to select more than one, sometimes several devices to all get that message.

Some states are also distributing weather radios and text devices, particularly Maine and North Carolina. 

One gap involving a text device is that wireless coverage is not uniformly available.  You may be able to get a message, and you may not.

Wireless devices with text are not always interoperable. Having text capability in your cell phone doesn’t mean that you can have a text conversation with someone who has another device. 

The cost of the devices themselves and monthly service are not affordable for very many people.  And there is a lack of portable devices with screens and keys that are accessible for people who are deaf-blind.

Another problem is the text information that you get from those devices is often very brief.  It doesn’t have all of the information that you need.  Consumers, when they find out there is an emergency will immediately get on the phone, turn on their radio, or turn on their TV to learn more.  It’s not always that easy for people who are deaf or hard of hearing.

There is also a need for all text devices to have an option to turn on automatically for emergency messages, and to be able to connect to auxiliary alerting devices.  There is a need for all of them to have the ability for backlit displays and keys, adjustable font size, and compatibility with Braille and large print displays.

And, this is a great high-up-on-the-wish list, deaf and hard of hearing people want the ability to send an emergency message to emergency centers from their text device.  Currently that is offered only in Sacramento, California.

Alarms

In the area of visual and audible alarms, the effectiveness varies from consumer to consumer, and from location to location.  Low frequency alarms are being explored.  You will hear about that from another speaker.  There is also an investigation under way on the use of different colored lights or other visual signaling, something that Jane Fernandes talked about earlier, so that you know when to leave the building, when to stay, when to go up, when to go down.

And there is a new public safety vehicle system that has different strobe lights than the old ones, and sirens at a different frequency that are supposed to be better at penetrating a vehicle.

One of the major public safety issues is that fires are the number one emergency.  If we look at the list of the most frequent emergencies, fire is number one.  The only safe alerting devices are hard-wired smoke detector systems, not the ones that you plug into a wall outlet, but the ones that are hard-wired throughout the building, and only those that have audible or visual alarms in all areas.  You can’t have people on the second floor able to hear the alarm or see the light flash in the basement, and if there is a fire in one part of the building, you need to know in another part of the building to get out safely.

Another great challenge is that the systems that exist for people who are deaf and hard of hearing cost far more money than comparable systems that you can buy off-the-shelf.  Most people simply cannot afford them. 

Message boards could be a very valuable tool in an emergency.  They have been growing along highways and in public transportation, and often are the only options that we will have in an emergency if we’re not at home, not at work, but in transit somewhere.  In Atlanta, the MARTA has TV which provides broadcast television with captions, as an example.

There are a few other gaps.  One is that computer pop-up software needs to have the ability to override user settings and pass through emergency messages while it’s still blocking other pop-ups. 

Public Address Systems

Sound- and public address systems need to have quality standards.  Anybody who has ridden our Metro system, the rail system, will have complaints about the quality of the audio announcements.  But you can go to pretty much any public building and the PA system is not so great.  Especially if you have hearing loss.  And we have, many, many, many reports, especially during the aftermath of Katrina, that the PA system in shelters was really impossible for people with hearing loss to understand. 

Interpreters and Other Service Providers

There were reports from people who were deaf and needed an interpreter, that those were not provided for them.

There is a very great need for a national support service provider program that will train people who help individuals who are deafblind in emergencies. 

And another lesson that we learned from Katrina was that we had overlooked the importance of having audiologists as part of the team that went to help people in emergencies.  It’s just common sense.  With a hurricane, you’ve got maximum amounts of water.  Water is not good for hearing aids or cochlear implants.  And so even if you managed to have your equipment with you, it could be damaged, it could be lost.  If that happens to you, you lose your communication totally.

       (Applause)

Questions and Answers

Phillip Moos  When talking about consumers, there are some pieces of information that you’ve shared with us where you’ve expected emergency agencies and people to offer these things, but I sometimes wonder if maybe it’s the fault of us Deaf and Hard-of-hearing consumers, in that we don’t make enough noise to tell these agencies that these are the kinds of things that we need.

So how can both groups then work together on that?  Is that maybe the intention of this conference?  Thank you. 

Cheryl Heppner:  Partly you answered your own question.  But also the CEPIN network, the Community Emergency Preparedness Information Network, is trying to do just that.  They are trying to work with consumers across the country to bring them together with emergency management, government officials, all of the parties that need to be involved.

So it’s important for everybody to be communicating with each other.  What you mentioned was one of the other key findings in the national report, to develop a partnership and share information.  But what now?  Consumers don’t really know what system is in place.  And the people who develop the systems don’t know about our needs.  Everything breaks down.

Chris Wagner.  My name is Chris Wagner, from Florida, one of the hurricane states.  We’ve been hit eight times in the last two years with hurricanes.  So I am wondering, why does it take a serious national disaster? I mean, we got hit four times last year, so in Florida we’ve been screaming for help.  We need communication access.  We’ve been asking for it, and we’ve been ignored.  I notice that one of the problems with both the national and state levels is that there’s no consistency.  I mean, we can ask our local FEMA folk, you know, interpreters need to be provided, and then they’ll argue that they don’t need to provide it.  And then we argue with the national FEMA office, and it seems to be that there is no communication between the federal and the state level, so there seems to be some communication problems there within the agencies communicating internally, and they’re not sharing with each other what is needed within the community.  You’ve used Katrina as an example, but Andrew hit us really hard 13 years ago, for example.  And 13 years later we still haven’t gotten what it is that we need.  So I think that’s part of the concern is what can we do?  I mean, it’s been a problem for at least 13 years.  This is not anything new.  That’s my concern.

Cheryl Heppner:  I just wanted to say to Chris that I feel your pain.  We are finding over and over again it’s not just Florida with the hurricanes, but it’s other places that have disasters that consumers are telling them about the problem, but they don’t learn from their mistakes.  And that one of the highlights of a national report that came out recently as well.  I think it’s a Catch-22.  I firmly believe that if we consumers must become more involved in working with emergency management, helping them to develop their plans and not being something that’s added on later, but being right there in the middle of it, then things will change. 

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