Low-Tech Communication Aids / Click to Enlarge

People who use augmentative communication are so varied that I rarely make any generalizations.  However, I firmly believe that everyone who uses a speech generating device needs a simple non-electronic communication system too.   

To begin, let me explain what low-tech communication methods are.  They are any, non-speech, communication method that doesn’t require an electronic chip and uses very simple, low cost equipment (or no equipment at all). 

Writing is the low-tech communication method that we are most familiar with, but there are dozens of low-tech communication options you’ve probably never imagined.  For example, non-verbal people who can only move their eyes actually have many choices for low-tech communication methods that allow them to spell out exactly what they want say.  No one needs to be stuck just blinking once for yes and twice for no.  Twenty questions only go so far.  A literate person must have a low-tech system that allows him to spell a message that no one could have imagined or predicted he wanted to say.   To do this he must be able to choose letters in the fastest and most efficient way possible. 

Over my next few posts I will introduce you to low-tech communication methods designed for people with different physical abilities.   We will look at methods for people with full or limited hand use and even for people restricted to only head or eye movement.  I’ll explain how each method works, provide resources and give tips for effective use.

 Why is Low-Tech/No-Tech Communication Important

I often hear people say it is important to have a low-tech system as a backup if your speech generating device breaks or runs out of charge.  While this is true, many of my clients who have both high and low-tech systems identify low-tech as their preferred way to communicate in some settings and with certain people. Here are a few of the reasons they give: 

• “We take my low-tech board everywhere.  It’s wonderfully portable.”
• “I like the personal closeness using my low-tech system gives me with my husband.” 
• “There are no batteries to charge and therefore never a surprise dead battery.”
• “My low-tech system can’t break so it is always there if I need it.”
•  “When I am tired and can only get close to my targeted letter on my low-tech board, my wife intelligently interprets what I am trying to do.   It’s nice to have her share the responsibility for composing the message.”
• “My daughter is sensitive to how fast I can go and she is flexible in the pace and timing she uses to help me construct my messages.” 
• “During a brief but unexpected hospital stay, I completely relied on my low-tech communication method.  My speech generating device was unavailable due to hospital theft and liability rules.” 

Please talk with your speech pathologist, also known as a speech therapist or SLP, if you don’t have a good low-tech communication system in place or yours has become difficult to use.  I will be posting my favorite low-tech solutions so keep checking in.

Let’s make this call chime even better.  Let’s take away all range (e.g. distance) restrictions.  This chime will alert someone out in the garden that you need suctioning or send a message to your daughter who is leaving work, to please pick up the dry cleaning on the way home.    

Finally, we want this call chime to work for you no matter what access method you use.  You should be able to use it if you can just move one finger or only move your eyes.   

Some of you may have already figured out what I am referring to since it already exists.     

This great solution is one that many of my patients think is priceless but it doesn’t cost anything if you already have a V or Vmax with an internet connection.  It is simply Text Messaging (aka TM, SMS).    

Because your caregiver’s cell phone can be set to chime or vibrate when it receives a Text Message, it can act like a call chime with extra benefits.    

I think the simplest way to send Text Messages on the V or VMax is to send them via Email.      

How to Send Text Messages via Email on Your V or VMax (or from any Computer)   

1.  Determine the cell phone Service Carrier of the person you want to Text (e.g. AT& T, Sprint, Verizon, etc).   

2.  Open a new Email.  In the address bar, type the person’s phone number including the area code (e.g. 4157772222).  Finish the address with the code that corresponds with their Service Carrier.  The chart below lists the codes for the most common carriers.   

    The email address should look similar to this 4157772222@txt.att.net  

3.  Compose a message of no more than 140 characters and send.  

Tips:   

• Ask for a reply the first time you Text a new recipient.  I find this system works with most but not all of my friend’s cell phones.
• Store the “cell phonenumber + carrier codes” for your family, caregivers and friends in your Email Contacts. 
  
  

  Stored Email Contacts List (2 SMS addresses listed

Program a page of your most common Text Messages. For Example:  

• URGENT! Come immediately!
• Please come when you have a spare moment.  No rush.
• I need repositioning.
• I’m ready for my meds.
• I need help with the computer.
• I’d like to tell you something.

If you store your most common Text Messages as well as your primary contacts’ SMS addresses, you will be able to send a complete Text Message in as little as 5 selections.   

Here’s how you would do it if you have AlphaCore:        

1.  Select Any Message Button (e.g. “Who was on the phone?”)
2.  Select the  “Computer Page”  in  AlphaCore     

AlphaCore Midsize Main Page

3.  Select “Send Quick Email” on the Computer Page  (the “Send Quick Email” button speeds the process by sending any message appearing in your Message Window as the body of an Email or Text Message.  All you have to do is choose the contact.)  

AlphaCore Midsize Computer Page

4.  Select your Contact’s SMS address listing that you’ve previously stored in your Email Contacts. 

Contacts List in V or Vmax Email System

  5.  Select “OK”

 My clients have shown me that getting online is one of the most important steps to effective communication and an improved quality of life.    If your V or VMax isn’t connected to the internet you are missing out on many very effective methods of communication, like Email and Text Messaging.  Please ask your speech therapist or local DynaVox representative for help if you need assistance in getting your device online.

These two buttons serve a different purpose and function than call systems I have spoken about in past blogs Home Alone-Personal Emergency Response Systems and Call Chimes: When a Handbell won’t do the Trick).  Also, delightfully, they don’t require any extra equipment- just your V, VMax or EyeMax. 

The first button I like to program is a loud clangy “Call Chime”.

 The second is a more Melodic “Attention Please…Oh When You Have a Moment” chime. 

The loud clangy  button’s purpose is to get someone’s attention in another room.  By programming this button to be louder than other buttons on your system (instructions provided at the end) it will work for signaling between rooms that are fairly close together.  If the caregiver will be further away in the house, a baby monitor can be used to carry the sound.  

The idea for the second type of call chime button came from support group participants.  This button produces a courteous little harp sound that can stand for “I am ready with my message now.” 

This pleasant sound does not interrupt the current speaker.   Instead the group knows that you have something to say and will pause for you to provide your message after the current speaker but before the next “talker” gets started.  This works nicely during any group conversation.  

Clients also tell me that this melodic chime is a nice way to let a caregiver know, “I need your attention-when you have a moment.  No rush.”  

Others use this melodic chime before they provide a message to someone who is involved in another activity as a way to say, “I am about to tell you something. Please give me your attention.”  Clients find this nicer than just launching into a message when they don’t even have the other persons attention.     

Here are instructions for making these buttons.    As I mentioned earlier, if you have AlphaCore you will already have these.   

Instructions for Making Buttons that Play Sounds (loud) on a DynaVox V or Vmax 

1. Go to a page on which you would like to place a sound button.
2. Select the Modify Button in the top toolbar.  It will turn red.  This means you can modify the NEXT button you select. 
3. Select an empty button on the page or a button you don’t often use.  The Modify Button Menu will pop up.
   
4. Select the box to the right of the word “Label.”  A keyboard will pop up.   Type “Call Chime” or “Attention Please” (depending on which of the two buttons you are programming) then select “OK.” 
5. Now select the blue “Behaviors” button.  A Behavior Editor will pop up.
   
6. Select the blue “Search” button.  A keyboard will pop up.  Type “temporary volume” then select “OK.”
7. A volume dial will pop up.  Adjust the dial to the maximum volume of 100 and then select “OK”.
8. Then select the blue “Search” button again.  Type “play a sound”.  Select “OK.”
9. Select the Play a Sound (Multimedia) behavior or the page that pops up.  Select “OK”
10. A “Play Sounds” folder will pop up. 
    
11. This “Play Sounds” folder will not have the two sounds we are looking for so you will need to select the blue “Change Folder” button.   A “Select a Directory” menu will pop up.
12. Select the box next to “Show All Directories”.  Now you should see the C: Drive Listed.
    
13. Select the + sign in front of the C:  Drive Icon.   Now all the folders on your C: Drive will be displayed. 
    
14. Select the + sign in front of the “5100” folder (the first folder). Now the sub-folders in the 5100 Folder will be displayed. 
    
15. Select the + sign in front of the “Shared” sub-folder.  They are in alphabetical order so if you don’t see the “Shared” sub-folder, use the blue arrows to scroll down.
16. Select the + sign in front of the “Sounds” sub-folder.
17. For a clangy alarm sound you can select the “Alarms and Sirens” sub-folder (it will turn blue when selected) and then select “OK.” 
    
18. Now all kinds of well…obnoxious alarm sounds appear.  You can try them all out by selecting a file (it will turn blue when selected) and then selecting the “Play Sound” button.  (I use Fire Alarm but take your pick.)  When you find the one you like (or the one most likely to make the people in your home come running to avoid a repeat) select it and press the “OK” button.
19. Select “OK” 2 times and you are done. 

 To create a button with the nice harp sound for your “Attention Please” chime, repeat steps 1-16 but select “Musical Instruments” instead of Alarms and Sirens” in the “Sounds” sub-folder.   Instrument sounds will appear.  Select Harp and then select “OK” 3 times.

I think you will find these buttons very helpful and now you know how to program all kinds of sounds (laughter, clapping, and messages you have recorded in your own voice that were saved as wav.files and then stored in the Sounds sub-folder, etc).  Think of the possibilities. 

In upcoming blogs I will tell you about two more fabulous communication solutions.  I’ll lead you through the steps of setting a button on your device to activate doorbells that can chime anywhere in your house (no distance limits like with the adapted call chimes we explored in my blog entitled “Call Chimes:  When a Handbell Won’t do the Trick”).  This is a very inexpensive, easy to set up and highly effective chime system that works beautifully in larger houses. 

Also, we will look at how to a have a message from your speech device show up on a caregiver’s phone whether they are in the next room or across town (through the wonder of text messaging).  These are two very popular alerting methods used by my clients and I wouldn’t want you to miss out on them.  See you next time!

Now I want to look at personal emergency response systems (PERS) for securing help when home alone.  These systems alert others that you need help even if you can’t speak or get to a phone.  By pressing a button, an emergency call is placed through your standard home phone line. This button can be worn on a wrist band, belt clip or as a pendant around your neck (if you cannot press a button with your finger, see Switch Adapted PERS below). Typically, you must be within about a 100 foot range of the phone base unit for the system to work. 

PERS Example 1

PERS Example 2

Two categories of PERS: Monitored vs. Non-Monitored

 Monitored Alerting Systems
A monitored alerting system automatically connects you with a response center anytime you press your button. 

Monitored Alert System

Response personnel have access to your address, medical information and your emergency contact phone numbers. 

If you are able to speak and are within voice range of the speaker phone, you tell the response center what kind of emergency you are having.   The center then calls emergency numbers in your area or your personal contacts depending on the situation. 

However, if you are unable to speak or are too far from the speaker phone, the operator will follow a protocol that you have pre-arranged.  This protocol dictates who is to be called, in what order and the message they are to be given.  

Philips Lifeline and Connect America are two nationally established companies that provide Monitored PERS but a Google search will provide a variety options.

Monitored PERS services usually charge a monthly fee of around $30.00 while the equipment is often free.  Reputable companies will provide you with pricing on the phone and not require a home visit/sales pitch.

Non-Monitored Alerting Systems
A non-monitored alerting system includes a pendant and a special phone.  No call center service is required.  When you press your button the phone will automatically dial the phone numbers you have programmed, in a specified order.  If the first person does not answer, your phone will call the next person in your sequence and so on.  The last number is typically an emergency number like 911.

How a Non-Monitored System Works

Once a person on your list picks up the call, a message that you or a helper have recorded is played for them.  Then they are instructed what to do.  Typically they are directed to press one phone key if they are able to personally respond to the emergency and a different key if they want the phone to continue dialing numbers and contact others.  

Telemergency and Guardian Alert Phones are popular.  Again, Google searches and reading reviews are encouraged as these technologies change rapidly.

 Non-monitored PERS require equipment but no monthly service fee.  The phone and pendant package range from about $100-$300. 

PERS Features to Compare When Choosing:

• availability of a waterproof pendant for taking into the shower (where many falls occur)
• availability of a Fall Alert (aka AutoAlert).  This is a pendant feature that sends an alert if it detects a fall but you are unable to push the button.
• the kind of response being offered by the monitoring company.  This can vary widely based on location.
• signal range (from pendant to the telephone base unit). This may be very important for those with larger houses or those interested in getting out into the yard.
• back-up battery life to insure communication in the event of a power outage.
• availability of alternative access switches if a person cannot use the standard pendant button with their hand. (see Switch Adapted PERS below)
• availability of two way speakerphone pendant to allow you to communicate when out of voice range of the base speakerphone.

Keep in mind that both monitored and non-monitored PERS require that the user be conscious at the time of the emergency and able to activate the button (unless the pendant has a fall sensor).  Unfortunately, research indicates many people fail to wear their alert button at all times.  Ultimately the system is only reliable if the pendant is worn faithfully.  

An important consideration, no matter what PERS you choose is how others are going to gain entry into your house in an emergency. Some companies will require an outside key in an agreed upon location or lock-box.  The protocol for how to get into your home should be provided to all friends, neighbors and family that are included on your emergency-call communication chain.  One good option is a key lock-box with a combination-number you can share with those who might need to enter your home in an emergency. 

Switch Adapted PERS (for people who can’t press a button)

A surprisingly large number of my patients who are unable to press standard PERS pendant buttons, due to limited movement, do spend some time home alone each day.  Fortunately, Philips offers a small box (AT-400) that provides switch access to your PERS.

Phillips AT-400

Therefore even the slightest face or body movement can be utilized to initiate an emergency call.    Please refer to my last blog entry entitled “Call Chimes:  When a Handbell Won’t Do the Trick” info and pictures of adaptive switches.  The same switches mentioned in that post can also plug into this box and operate the Philips Lifeline PERS. 

Cell Phone for Emergency Calls and Texts

Some of my patients who can use cell phones will pre-program emergency numbers they can quickly call or text.  This is a great idea but serious limitations should be kept in mind.  Cell phones: 

• cannot go into the shower.
• need frequent recharging while PERS have long lasting battery lives.
• do not automatically provide location information on an emergency call like most land lines do.
• do not provide redirect to another person if there is no response.
• cannot dial, redirect and provide a message with a single selection.

 I hope you found this information useful and I encourage people to share a review of a PERS you have used or your thoughts on any alerting systems.

 In my next post I will look at alerting options already available within your speech generating device.

Possibly the most overlooked and arguably essential element for a complete communication system is a call chime.  Typically this is most critical for those who can’t walk or are in danger of falls.  A person should never be left without a way to “call out” to others.  Everyone must have the ability to signal to those in another room, in the same room and even ideally across town.

Let’s look at a few call chime options for around the house.  Some don’t even require any hand movement.

Wireless Doorbell

A very simple and inexpensive solution for people who can still easily press a button and move an arm is a wireless doorbell.  These can be found at any hardware store.

Battery-operated wireless doorbell

Plug-in wireless doorbell

The pALS simply presses a button on the transmitter, placed within easy reach, and a doorbell rings in the house.  The transmitter can be attached with Velcro to an article of clothing, a bedside table, or the arm of a wheelchair, or worn around the neck.   Sticky Velcro can be used on a variety of surfaces so the doorbell transmitter can be easily moved to accommodate use in a variety of rooms and in different seating positions.   A caregiver can either carry the receiver with him or place it in a central location where he is sure to hear it.  These are doorbells so the sound is loud enough to be heard in multiple rooms.

One word of caution – Be sure to replace the battery in both the transmitter and receiver frequently and check it prior to each use.  The only thing worse than not having a call chime, is relying on one which is actually out of commission.

Switch Adapted Call Chimes   (for people who can’t press a button)

An option for people with arm weakness is an adapted call chime.  This is simply a wireless doorbell modified so that it can be activated by an adaptive switch.

Switch-adapted call chime from Enabling Devices

Switch-adapted call chime from RJ Cooper

Adaptive switches are sensors which replace the need to press the doorbell button with a finger.   People who have only minute movement in any part of the body can typically activate some kind of switch, including:

• Switches activated by eyebrow raising    (Options:  Piezo-Switch (formerly known as P-Switch), Impulse Switch, SCATIR Switch)
  

  Eyebrow Switch

• Switches activated by minute body movements (Options:  MicroLight Switch. Spec Switch, Ultimate Switch, etc.)
  

  Switch activated by finger

• Switches activated by foot movement (Options:  Smart Nav Single Foot Switch, Ultimate Switch [good when in bed])
  

  Foot Switch

• Switches activated by head movement (Options:  Pillow Switch, MicroLight Switch, Ultimate)
  

  Switch activated by head movement

• Switch mounting arms to position switches for easier access (Options:  Slim Armstrong, Ultimate Switch, Universal mounting arm)
  

  Switch mount

Switches come in a variety of shapes and sizes depending on the action used to activate them.   You may already be using a switch to control your wheelchair, speech generating device or computer.  If you don’t have one, specialists who assists you with communication or wheelchair control may be able to help you find the right switch to enable you to activate a call chime.

Surprisingly even though call chimes are essential for most pALS with mobility issues, they are not funded through Medicare.  Your local ALS Association, Muscular Dystrophy Association or ALS Clinic may provide lending programs that offer these items.  Otherwise payment is out of pocket.   A simple wireless door bell is usually less than $30.00.  Adapted call chimes can be purchased at the websites mentioned above for around $60.00.  Switches range from $30 up.

Call chimes are essential for keeping pALS and caregivers connected.  They also have the added benefit of giving caregivers a bit more freedom to move about and even sleep more deeply.  This improved communication significantly reduces anxiety for both pALS and caregivers.  If you don’t have an effective call chime, please begin getting yours set up today.

I hear lots of SGD related confessions: “Well, I mostly use my SGD for email.”; “I prefer to use low tech communication with my family.” “I only use my SGD when I go out, when guests are over, and on the phone.”  

Why the tone of guilt?  Perhaps there’s a rumor that you have to be faithful to your SGD.  Another rumor might be that the only valid use for an SGD is to produce speech.  Well, I advocate communication method promiscuity! In this day and age we are all doing it.  Throughout an average day I spend time communicating, via email, speech, the phone, text messages, faxes, writing and Skype.  Why wouldn’t someone who uses AAC find a wide variety of communication methods necessary too?

Yes, speech generation is essential for most augmentative and alternative communication (AAC) users but so are other methods of communication. Often patients with ALS (pALS) even prefer other communication methods in specific situations, with certain individuals, or at certain stages of ALS progression.  Unfortunately these other methods are never explored adequately for most pALS.  Often during the few visits pALS have with their speech therapists all of the attention is focused on SGD selection and training. 

PALS range from touch typists to eye gaze users, but no matter their physical abilities, AAC users can benefit from learning about a variety of communication methods, tools and strategies.  There are phone, email, text messaging, and low tech options for people of all abilities.  These communication methods are frequently inexpensive and simple to implement.    

Here is an example of the variety of methods one of my patients, Susan, draws on to communicate.  The pie slices I think nicely illustrate the reality of effective AAC use. 

Susan is a patient with ALS who has lost her ability to speak.  She is still able to walk, write, and type.  This is a profile that illustrates the amount of time she used different communication methods 7 months ago as compared to now.

As you can imagine, Susan considers each part of the pie necessary for a complete communication system.  As her needs change, methods will likely fade out, being replaced by other methods better suited to her physical abilities. 

On an ongoing basis, I’ll introduce and discus some of these options and provide readers with resources for getting started with them.    I look forward to sharing some of the solutions my patients have found helpful and hearing about methods that are invaluable to you.

At our ALS center, patients and their families occasionally recount being confounded by others’ lack of skill in interacting with a person who uses AAC. While often the offender is an acquaintance or a stranger, more troubling to AAC users is when this individual is a relative or friend. Lack of skill on the part of a communication partner, especially one with whom we are close, can be interpreted as insensitivity and be especially hurtful. Our expectation is that this person should understand our needs.

No one is typically taught the nuances of interacting with someone using AAC. Nervousness due to unfamiliarity with AAC and eagerness to be of assistance can even lead to the very behaviors the user may find aggravating. In addition, personal preferences are at play and what one user finds helpful, another interprets as rude.

It is certainly unlikely that there will be a public education campaign in the foreseeable future offering tips on being a better communication partner to someone who uses AAC. Therefore we must come up with ways to teach, educate and sensitize partners about our own preferences.

Over the course of my blogs I will describe solutions I’ve developed with patients and families through the years. Today I’ll introduce the idea of the Communication Preferences Sheet. This is a proactive approach to improving interactions usually before problems are encountered. If a partner has already demonstrated behaviors which undermine communication, this approach avoids singling them out or making them feel inadequate.

What is a Communication Preferences Sheet?

It is a personalized list of the strategies and preferences which make communication easier for the AAC user. The sheet can be handed out to visitors or new communication partners. Another effective approach is to distribute it via email to friends and family. People typically appreciate being given some direction especially when it is upbeat and worded positively.

Here is an example (just to get your creative juices flowing for your own customized lists):

Dear Friends and Family,

This is a list of tips that can help us to interact more effectively. I have provided it to you because communicating with you is important to me.

Explanations:

• I have ALS (Lou Gehrig’s disease), a neurological condition that affects my ability to speak. It does not affect my thinking or hearing.
• I’m using different systems to communicate now including email, a paper communication board and a device that speaks the messages I compose.

My Strategies & Preferences

• Please find a position in front of me and at my eye level when you want to communicate with me.
• Please ask me if I would like you to finish sentences for me. In some situations it is helpful and other times it makes me feel rushed.
• Please ask me to repeat myself if you don’t understand me.
• If you can’t understand me you are welcome to read the screen where I compose my messages.
• Please remember to address me directly. I appreciate this even if the person with me is helping us communicate.
• Sometimes composing my messages can take a while. Your patience really helps me feel more at ease. Please don’t feel like you need to fill in the quiet.
• I now prefer communicating through email rather than on the phone since there is less time pressure. My email address is AR@instamail.com.

Creating a communication preferences sheet will help you avoid repitition, give partners confidence and allow them to side-step common problems that may interfere with interactions. Perhaps most importantly, it will help you explore your own thoughts on what makes communication work better for you.

I can think of many patients/friends over the years who have taught me how to be a better communication partner. I don’t expect I will ever stop learning and look forward to hearing from AAC users and their partners on this topic. My friend Mike Bougher who has lived a rich and full life with ALS for the past 9 years comes to mind. He has a lovely piece on communication on his website at quadbliss.com/communication_with_a_speech_impa.htm. More of his wonderful writings and art can be found at quadbliss.com.