Initial word specification for the communication and ECS aids

 

Methodology: Before a specification for the communication and ECS words is produced a literature review aimed at discovering current research and appliances has been conducted.

 

Literature Review on Augmentative and Alternative Communication

In December 1999 leading AAC (Augmentative and Alternative Communication) organisations in America produced a formal request for an AAC Devices National Coverage Decision (NCD, 1999[SB1] ) [see http://augcominc.com/whatsnew/medicare.html for further details].  In this report AAC devices were defined as:

 

electronic devices that provide treatment for severe dysarthria, apraxia of speech, or aphasia, when, due to those communication impairments, an individual is not able to meet the communication needs that arise in the course of current and projected future daily activities.

 

Perhaps the most well known user of an AAC device is the physicist Professor Stephen Hawking who in 1974 discovered that black holes emit radiation (Putney, 2001[SB2] ).  Despite suffering from the progressive neurological disease ALS (amyotrophic lateral sclerosis) he has continued to deliver lecturers through an AAC device supplied by Cambridge Adaptive Communication (CAC) (Hawking, 2001[SB3] ) [see http://www.cameleon-web.com for more details on CAC products] 

 

AAC devices typically fall within three categories (NCD, 1999):

1.      AAC devices with digitised speech output.

These systems have been termed as “closed systems” as they only allow the user to reproduce stored phrases and words.

 

2.      AAC devices with synthesised speech output – requiring the user to have direct contact with the device and individual entry of each character produced.

These systems have been termed as “open systems” as they allow the user to produce any word, sentence or phrase they wish.  However, there are no pre-recorded phrases and every word must be individually typed in before the message can be communicated through speech synthesis.  The user must also be bale to have physical contact with a keyboard.

 

3.      AAC devices with synthesised speech output – with multiple methods of device access and message formulation.

This hybrid approach allows the user to generate communication through individual words and/or stored phrases.  It therefore allows communication in a variety of environments in a timely manner.  Devices in this category also do not necessarily require direct physical contact, other devices such as a head or mouse pointer can be used.

 

Despite the many devices within each of these categories because of the wide range of physical, cognitive, linguistic, sensory, motor deficits and variety of environments encountered, there is no single device that can meet every users requirements (NCD, 1999).  Selecting the most appropriate device for an individual requires an assessment with the clinician, user and members of the users support network.  Part of this assessment is to identify the required level of participation.  Beukelman and Garrett, 1988[SB4]  suggest that for some the purpose of their AAC device is to enable them to fully contribute to a variety of conversational topics and environments.  While for others communication only in specific areas is sufficient.  Yorkston and Dowden[SB5] , 1985 have defined four levels of participation as evident in Table 1.

 

Table 1: Needs Assessment Profile for Adults with Acquired Language Impairment

Type of system

1. Comprehensive Communication System

2. Controlled Communication System

3. Controlled Output to Meet a Specific Nonconversational Need

4. Augmented Communication Input

Goal

Provide a means of communicating multiple message types with unrestricted partners in any environment

Provide a means of communicating in-depth on predictable themes with known partners in familiar environments

Meet a specific communication need in limited environments

Provide enhancement of information reception in multiple environments

Message Needs

1.Call attention

2.Select topic

3.Answer yes/no questions

4.Communicate basic needs

5.Communicate predictable information

6. Communicate unique information

7.Social communication

8.Initiate communication

9.Conversational control phrases

1.Call attention

2.Select topic

3.Limited responses (yes/no, choices, single word question responses)

4.Limited initiation

5.Communicate predictable information

6.Control phrases

1.Call attention

2.Signal emergencies

3.Write letters

4.Complie lists

5.Perform calculations

6.Choose/bus route

7.Place bets at horse track etc.

8.Select menu items

1.Understand all information that is spoken

2.Understand key words

3.Understand in breakdown situations

Listener

1.Nonliterate partner

2.Partner with poor visibility

3.Partner with minimal patience

4.Partner with limited knowledge of system

5.Muliple partners

1.Familiar partners

2.Single partner

3.Multiple partners

1.Single partners

2.Several partners

3.Partners with limited patience

4.Self

1.Single partners (speakers)

2.Multiple speakers

3.Nonliterate  speakers

4.Speakers who cannot type

Locations

1.Inside

2.Noisy environment

3.Outside

4.While travelling

5.Muliple locations, etc.

1.Single room

2.Quiet room

3.Inside

4.Outside

1.Single room

2.Outdoors

3.Traveling

4.Etc

1.Quiet

2.Noisy

3.Speakers positioned across room

 

However, there is evidence to suggest that the most appropriate aids are not being provided to users.  A survey by Robertson[SB6]  in 1993 discovered that only 58% of users regularly used their AAC devices at home, while Allaire et a[SB7]l  1991 suggested a figure of 66%.  However, it has been suggested that some users may not need their AAC device at home as close family can communicate unaided (Murphy et al[SB8] , 1996).

 

Perhaps one of the keys to the successful use of an AAC device is the choice of the appropriate stored vocabulary as this can save valuable time when communicating.  Murphy et al[SB9] , 1996 has commented that “irrelevant vocabulary is one of the main disincentives to the use of AAC systems.  However, they continue by suggesting that the choice of vocabulary should be unique to the user, depending on age, gender, interests, culture and previous experience.  Despite the importance of vocabulary, it is perhaps surprising that there would appear to be little research literature on this subject.  It may be assumed that certain phrases are commonly used in conversation and therefore there is a small standard vocabulary, suitable for all users.  However, despite considerable research into word frequency usage for ‘normal’ speech [see the British National Corpus[SB10] ] there is little research with AAC devices.

 

Indeed, in 1999 a research project to gather such information was awarded to the Prentke Romich Company in America and a software package LAM (Language Activity Monitoring) is now commercially available(AAC performance Measurement, 2001[SB11] ).  In addition, Mayer-Johnson Co[SB12]  have a dictionary which records when words are used.  The results of the first 100 most popular words are provided in Appendix A (personal communication Terry Johnson).

 

However, perhaps the most comprehensive review is available from the Barkely Memorial[SB13] .  Here, several lists are available for specific target users, namely:

§         Generic Message List for AAC users with ALS.

§         Vocabulary for Preschool, and School age.

§         Vocabulary Young Adults.

§         Large vocabulary for AAC users.

§         Environment specific key phrases.

 

These lists in combination with specific words from the user can be used to define a suitable vocabulary.

 

Specification

The original research protocol specified that synthetic speech would be produced based on severe dysarthric speech as the input.  The size of the vocabulary was suggested as less than 100 words or phrases.  As this review has identified despite some key words and phrases being relevant to many users a specific global vocabulary for all is not attainable.  Consequently, it will be necessary to tailor the vocabulary specifically to the user with some key words from the generic message list above, created by Beukelman and Gutmann, 1999[SB14] .  In total this list has 82 words or phrases but several are of a repetitious nature or require additional information not present in the list to complete the remainder of the phrase.  Therefore, a list of 59 has been complied in Appendix B, and it is suggested that an additional 20-40 words or phrases specific to the user be included.  These additional words should be obtained from the user, their family and the present communication aid, if present.

 

When using this device it should also be possible for the user to easily change speaking modes.  At certain times it may be appropriate for the device to speak directly after the users input.  While in other circumstances the user may be building a sentence and consequently it would be more suitable for the device to communicate once the user has completed the sentence they wish to communicate.  The particular interface chosen to enable this should be based on the particular requirements of the user.  However, at this stage it would seem most appropriate to facilitate this directly through speech.

 

Literature review on Environmental Control Systems

Environmental control systems (ECS) allow a disabled person to control various electronic assistive devices within their environment, such devices typically being the lights, door, television, telephone and other domestic instruments.  Such systems have been in operation since the 1950’s when they were first used for survivors of the poliomyelitis epidemic (Dicey and Shealey, 1987) [SJB15] .  It is difficult to quantify, but the total annual budget for ECSs in England and Wales, may be in the order of £5m, while Wellings and Unsworth, 1997 suggest that a typical installation cost of a system operating in two rooms with a remote door release and intercom is in the order of £4,500[SJB16] . 

 

The benefits that such systems can bring to the well being and independence of appropriate users cannot be underestimated.  For example in a study by Von Maltzahn et al[SJB17] 1995,  one participant commented that “there is nothing more cruel and punishing than leaving a quadriplegic in a room to watch television without being able to change channels”.  ECSs can enable the user to control their environment and therefore empowers the user.  Harmer et al[SJB18] 1999 , in their review of user benefits of ECSs found that feelings of independence, self-worth, happiness and control over their environment were enhanced.  While Symington et al[SJB19]  1986, in their study of 15 people with quadriplegia in long-term care hospitals commented that the users with an ECS and their carers experienced fewer frustrations than people without an ECS.

 

Platts and Andrews 1994, comment that ECSs cannot replace human contact[SJB20] , but while this may be true there is evidence to suggest that in certain circumstances an ECS can reduce the amount of care required.  For example, in the aforementioned study by Symington et al[SJB21] 1986,  there was a reduction in carer time of 2 hours per day for people who used the ECS for more than 10 times daily.  The study by Harmer et al suggested that for 13 out of 16 participants, carer time was reduced after installation of an ECS.

 

In an era of finite funding, perhaps one the greatest difficulties with the ECS system is equipment non-usage.  Gitlin et al[SJB22]  1995, highlighted several studies and concluded that between 15% and 50% of issued devices were not used while Bell et al[SJB23]  1987, suggest that as many as 40% of users abandon their ECS.  It has been suggested that in certain situations non-use can be attributed to the users preference for others to do tasks for them[SJB24] (Holme et al, 1996) .  However, it may be suggested that changing needs over time may also be a contributing factor.  The appropriate switch(s) and positioning may also contribute as Von Maltzahn et al[SJB25] 1995  indicated that minor changes such as the type or placement of a switch can greatly impact upon an ECSs effectiveness.

 

The use of speech as an input could resolve the issue of improper switch placement and efforts to produce a commercial product have been in place since the 1970’s.  At this time perhaps the first voice activated wheelchair and environmental control unit was developed at Rehabilitation Medicine in New York (Youdin et al, 1980[SB26] ).  In 1992, work on the VADAS (Voice Activated Domestic Appliance System) was published, and this was a speaker dependant device with a capacity of 16 words (Noyes and Frankish, 1992[SB27] ).  While today the SiCare Lite[SB28]  ECS controls a multitude of electronic home aids through direct speech and retails at approximately £350.  Manasse, 1999 [SB29] suggests that despite speech controlled ECS alleviating many user frustrations, misrecognitions and non-recognition’s are an unresolved problem.  While evidence of the effectiveness of speech controlled ECSs with severe dysarthric speech is not forthcoming.

 

Specification

In terms of the devices controlled by an ECS the literature does not indicate any common devices, while discussions with clinical engineers who prescribe ECSs indicates that each users system is unique.  It is therefore not possible to define exactly what devices should be controlled but a list of the most common devices prescribed at BDGH is provided in Appendix C.  The specific devices must therefore be obtained from the user once they have been accepted on to the project.

 

 

References

AAC performance Measurement. (2001). http://www.prentrom.com/aacassessment/performmeas.html.

 

Allaire JH. Gressard RP. Blackman JA. Hostler SL. (1991). “Children with severe speech impairments: caregiver survey of AAC use.” Augmentative and Alternative Communication. 7:248-55.

 
Barkely Memorial. http://aac.unl.edu/.

 

Bell F. Whitfield E. Rollett RP. (1987). “Investigation of Possum users in Scotland.” Int Rehabil Med. 8:105-12.

 

Beukelman D. Gutmann M. (1999). http://aac.unl.edu/Vocabulary/ALS_Message_List1.htm.

 

Beukelman DR. Garrett KL. (1988). “Augmentative and Alternative Communication for Adults with Acquired Sever Communication Disorders.” Augmentative and Alternative Communication. 4(2):104-21.

 

British National Corpus. http://info.ox.ac.uk/bnc/.

 

Dicey R. Shealey S. (1987). “Using technology to control the environment.” American Journal of Occupational Therapy. 4:717-21.

 

Gitlin LN. Burgh D. (1995). "Issuing assistive devices to older patients in rehabilitation: an exploratory study." The American Journal of Occupational Therapy. 49(10):994-1000.

 

Harmer J. Bakheit AMO. (1999). "The benefits of environmental control systems as perceived by disabled users and their carers." British Journal of Occupational Therapy. 62(9):394-98.

 

Hawking S. (2001). http://www.hawking.org.uk/home/hindex.html.

 

Holme SA. Kanny ME. Guthrie MR. Johnson KL.  (1996). "The use of environmental control units by occupational therapists in spinal cord injury and disease services." The American Journal of Occupational Therapy. 51(1):42-48.

 

Manasse N. (1999). “Speech recognition.” http://aac.unl.edu/Speech_Recognition.html.

 

Mayer-Johnson Co. www.mayer-johnson.com.

 

Murphy J. Markova I. Collins S. Moodie E. (1996). "AAC systems: obstacles to effective use."31(1):31-44.

 

NCD (1999). “Formal request for national coverage decision for augmentative and alternative communication devices.” http://augcominc.com/whatsnew/medicare.html.

 

Noyes J. Frankish C. (1992). “Speech recognition technology for individuals with disabilities.” Augmentative and Alternative Communication. 8:297-303.

 

Platts RGS. Andrews K. (1994). “How technology can help rehabilitation.” British Medical Journal. 309:1182.

 

Putney DL. (2001). Stephen William Hawking”. http://www.sjsu.edu/depts/Museum/hawkin.html.

 

Robertson A. (1993). “What are the users real feelings?” Augmentative Communication in Practice. Collected papers, study day 1993. CALL centre, Edinburgh. In Murphy J. Markova I. Collins S. Moodie E. (1996). "AAC systems: obstacles to effective use."31(1):31-44.

 

SiCare Lite. http://www.nanopac.com/SiCare.htm.

 

Symington DC. Lywood DW. Lawson JS. MacLean J. (1986). “Environmental control systems in chronic care hospitals and nursing homes.” Archives of physical medicine and rehabilitation. 67:322-25.

 

Von Maltzahn WW. Daphtary M. Roa LR. (1995). "Usage patterns of environmental control units by severely disabled individuals in their homes." IEEE Transactions on Rehabilitation engineering. 3(2):222-27.

 

Von Maltzahn WW. Daphtary M. Roa LR. (1995). "Usage patterns of environmental control units by severely disabled individuals in their homes." IEEE Transactions on Rehabilitation engineering. 3(2):222-27.

 

Wellings DJ. Unsworth J. (1997). "Fortnightly review: Environmental control systems for people with a disability: an update." BMJ. 315:409-412 http://www.bmj.com/cgi/content/full/315/7105/409#R2.

 

Yorkston K. Dowden P. (1983). “Nonspeech language and communication systems”. In A. Holland (Ed). “Language disorders in adults: recent advances.” San Diego. College-Hill Press:283-312.

 

Youdin M. Sell G. Reich T. Clagnaz M. Louie H. Kolwicz R. (1980). “A voice controlled powered wheelchair and environmental control system for the severely disabled.” Medical Progress Through Technology. 7:139-43.


Appendix A

Note: Some of the words are improperly weighted as they have been used in communication screens, while there are some words that are miss-spelt.  A full list of 1500 words is available.

Word

Waiting

 

Word

Waiting

and  

312

 

miss 

 33

my  

235

 

were 

 32

he  

218

 

grocery 

 32

the  

203

 

it 

 32

is  

186

 

respectfully 

 31

go  

176

 

went 

 31

mayer  

171

 

have 

 31

dear  

170

 

when 

 30

in  

145

 

national 

 30

to  

141

 

please 

 30

work  

125

 

co 

 29

button  

116

 

rifle 

 29

name  

115

 

handgun 

 29

day  

114

 

rivera 

 29

joe  

103

 

charlton 

 28

that 

 99

 

peterson 

 27

you 

 85

 

terrible 

 26

how 

 83

 

each 

 26

am 

 75

 

time 

 25

was 

 73

 

under 

 25

at 

 73

 

on 

 25

box 

 72

 

howareya 

 25

are 

 71

 

big 

 25

johnson 

 69

 

ride 

 25

or 

 67

 

there 

 24

terry 

 67

 

glad 

 24

solana 

 66

 

got 

 24

ca 

 64

 

going 

 23

really 

 62

 

jacob 

 23

of 

 53

 

worst 

 23

mayerj 

 52

 

me 

 22

this 

 51

 

jones 

 22

things 

 51

 

one 

 22

what 

 49

 

early 

 22

man 

 48

 

morning 

 22

felt 

 46

 

girl 

 22

white 

 46

 

rickey 

 22

had 

 46

 

whynot 

 22

cambridge 

 46

 

all 

 22

end 

 42

 

bicycle 

 21

buy 

 41

 

bill 

 21

do 

 40

 

did 

 20

honorable 

 39

 

we 

 20

for 

 38

 

teacher 

 19

dc 

 37

 

want 

 19

william 

 37

 

finish 

 19

like 

 37

 

with 

 19

pennsylvania 

 37

 

much 

 19

boy 

 36

 

mom 

 18

your 

 34

 

stewart 

 18

 


Appendix B

Phrases and words from the generic message list

 

Greetings
Hello.
Good morning.
Good to see you.

 

Clinic Appointments

My seating, wheelchair/computer isn't working.
What's next.

Opening Questions

What's new?
How are you today?
What's happening with you?

 

Personal Care

Can that wait until another time?
Just a minute, I'm not finished.
When will you be back.

Responses

I'm OK.
Could be better.
Not very good today.
I like that.
I don't understand.
I don't know.
I don't think so.
It is important to me.
It is not that important.
I am sorry to hear that.
Really?

 

Conversational Turnarounds & Extenders

What about you?
What do you think about that?
What have you been doing?
Tell me about your family.
That's interesting, tell me more.
Thank you.
You're welcome.

Conversational Continuers

Really.
Alright.
Isn't that wonderful.
That's good.
I see.
I know it.

Okay.
Yeah.
Good.
Uhhuh.

 

Good-byes and Farewells

Thanks for stopping by.
Come back again.
Great to see you again.
See you soon.
Good night.
Good-bye.

 

Resolving Communication Breakdowns

I changed my mind.
Let's try that again.
Let's do it another time.
Tell me you what think that I said.

 

Health and Safety

This is an emergency.
Get help now!
I need suction!

Use of Telephone
This is (Name), I have a speech problem. I use a machine to talk. Please be patient.
How are you?
I'll talk to you soon.
Call me back when you can.
Do you understand me?

 

Meeting New People

Hi, I'm (Name). I can hear and understand everything that you say. I have ALS/Lou
Gehrig's disease and I have trouble speaking. I use this machine to communication. Give me a minute.
Please tell me if you don't understand what I am saying.

 


Appendix C

 

Possible ECS words

 

Alarm

Intercom

Door open

Door close

Light on

Light off

Floor light on

Floor light off

Lamp on

Lamp off

Phone

Phone mum

Pager

1

2

3

4

5

6

7

8

9

0

BBC 1

BBC 2

ITV

Channel 4

Channel 5

Channel 8

Channel 9

Volume up

Volume down

Text

Red

Green

Yellow

Blue

TV on

TV off

Sky on

Sky off

Sky box office

Stereo on

Stereo off

Radio

Tape

CD

DVD

Video

Play left

Play right

Stop

Record

Fast forward

Rewind

Bed head up

Bed head down

Bed foot up

Bed foot down

Community alarm

Curtain open

Curtain close

Fan on

Fan off

Video phone on

Video phone off

Window open

Window half open

Window close

 

 

 


 [SB1](1999). “Formal request for national coverage decision for augmentative and alternative communication devices.” http://augcominc.com/whatsnew/medicare.html

 [SB2]Putney DL. (2001). Stephen William Hawking”. http://www.sjsu.edu/depts/Museum/hawkin.html

 [SB3]http://www.hawking.org.uk/home/hindex.html

 [SB4]Beukelman DR. Garrett KL. (1988). “Augmentative and Alternative Communication for Adults with Acquired Sever Communication Disorders.” Augmentative and Alternative Communication. 4(2):104-21

 [SB5]Yorkston K. Dowden P. (1983). “Nonspeech language and communication systems”. In A. Holland (Ed). “Language disorders in adults: recent advances.” San Diego. College-Hill Press:283-312.

 [SB6]Robertson A. (1993). “What are the users real feelings?” Augmentative Communication in Practice. Collected papers, study day 1993. CALL centre, Edinburgh. In Murphy J. Markova I. Collins S. Moodie E. (1996). "AAC systems: obstacles to effective use."31(1):31-44.

 [SB7]Allaire JH. Gressard RP. Blackman JA. Hostler SL. (1991). “Children with severe speech impairments: caregiver survey of AAC use.” Augmentative and Alternative Communication. 7:248-55.

 [SB8]Murphy J. Markova I. Collins S. Moodie E. (1996). "AAC systems: obstacles to effective use."31(1):31-44.

 [SB9]Murphy J. Markova I. Collins S. Moodie E. (1996). "AAC systems: obstacles to effective use."31(1):31-44.

 [SB10]http://info.ox.ac.uk/bnc/

 

 [SB11]AAC performance Measurement http://www.prentrom.com/aacassessment/performmeas.html

 [SB12]www.mayer-johnson.com

 [SB13]http://aac.unl.edu/

 [SB14]http://aac.unl.edu/Vocabulary/ALS_Message_List1.htm

 [SJB15]Dicey R. Shealey S. (1987). “Using technology to control the environment.” American Journal of Occupational Therapy. 4:717-21

 [SJB16]Wellings DJ. Unsworth J. (1997). "Fortnightly review: Environmental control systems for people with a disability: an update." BMJ. 315:409-412 http://www.bmj.com/cgi/content/full/315/7105/409#R2

 [SJB17]Von Maltzahn WW. Daphtary M. Roa LR. (1995). "Usage patterns of environmental control units by severely disabled individuals in their homes." IEEE Transactions on Rehabilitation engineering. 3(2):222-27

 [SJB18]Harmer J. Bakheit AMO. (1999). "The benefits of environmental control systems as perceived by disabled users and their carers." British Journal of Occupational Therapy. 62(9):394-98.

 

 [SJB19]Symington DC. Lywood DW. Lawson JS. MacLean J. (1986). “Environmental control systems in chronic care hospitals and nursing homes.” Archives of physical medicine and rehabilitation. 67:322-25

 [SJB20]Platts RGS. Andrews K. (1994). “How technology can help rehabilitation.” British Medical Journal. 309:1182

 [SJB21]Symington DC. Lywood DW. Lawson JS. MacLean J. (1986). “Environmental control systems in chronic care hospitals and nursing homes.” Archives of physical medicine and rehabilitation. 67:322-25

 [SJB22]Gitlin LN. Burgh D. (1995). "Issuing assistive devices to older patients in rehabilitation: an exploratory study." The American Journal of Occupational Therapy. 49(10):994-1000.

 [SJB23]Bell F. Whitfield E. Rollett RP. (1987). “Investigation of Possum users in Scotland.” Int Rehabil Med. 8:105-12.

 [SJB24]Holme SA. Kanny ME. Guthrie MR. Johnson KL.  (1996). "The use of environmental control units by occupational therapists in spinal cord injury and disease services." The American Journal of Occupational Therapy. 51(1):42-48

 [SJB25]Von Maltzahn WW. Daphtary M. Roa LR. (1995). "Usage patterns of environmental control units by severely disabled individuals in their homes." IEEE Transactions on Rehabilitation engineering. 3(2):222-27

 [SB26]Youdin M. Sell G. Reich T. Clagnaz M. Louie H. Kolwicz R. (1980). “A voice controlled powered wheelchair and environmental control system for the severely disabled.” Medical Progress Through Technology. 7:139-43.

 

 [SB27]Noyes J. Frankish C. (1992). “Speech recognition technology for individuals with disabilities.” Augmentative and Alternative Communication. 8:297-303.

 

 [SB28]http://www.nanopac.com/SiCare.htm

 [SB29]Manasse N. (1999). “Speech recognition.” http://aac.unl.edu/Speech_Recognition.html