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How People Who Use Electronic Augmentative
and Alternative Communication Devices Utilize Telephony
 

A Rehabilitation Engineering and Research Center on Universal Telecommunications Access (RERC)
Report

Table of Contents

Preface

Survey Summary
    Summary Results
    Summary of Recommendations
Introduction
Methods
How the Survey Instruments were Developed
    Preliminary Search for Participants
    Field Instrument Development
Survey Participants
     Who were the 100 Survey Respondents?
     Geographic Information
     Disability Information
Results
    Ability to Use the Phone
    Strategies for Using the Telephone
    Other Strategies Used by People with Speech Disabilities
    Use of Telephone Features
    Cost of Adaptive Equipment
    Paying for Equipment
    Use of Operator Assistance
    Non-Use of Various Phone Services
    Telephone "Hang-Ups": One Barrier
    Kinds of Calls Where Hang-Up Occurred
    Positive Response to a Proposed Network Solution to Hang-Ups
    Improvements Wanted Across Most Telephony Services
    Disability-Related Customer Service
    Problems with Directory Assistance
    Lack of Knowledge about Telephone Relay Service
    Using Public Phones
    Ideas for Telephone Devices and Services
    Upgrading Current Telephones to Facilitate Use by People Who Use AAC Devices
    Problems with AAC Devices and Telephones
    Desirable Portable Phone Features
    Fax
        Ideal Fax Machine
    E-Mail and Computer Usage
        Use of E-Mail
        Use of Banking Services
    Preference for Telephony by People with Speech Disabilities
    How to Market Technology to People with Speech Disabilities
Conclusion: Implications for Future Research and Action  

Appendix 1
            Original Request or Invitational Letter
            Preliminary Questionnaire or Initial Profile Form as Disseminated
            Groups and Individuals Targeted for Preliminary Mailing
Appendix 2 - Reasons Given for Not Participating in the Survey 
Appendix 3 - Final Survey Instruments Disseminated [not included]
Appendix 4 - Contributors to the Study 
Appendix 5 - Advisors to Development of Instruments
Appendix 6 - Equipment Used by People with Disabilities
Appendix 7 - Funding Source for AAC Equipment for Respondents
                     with Severe Disabilities Under Age 12 in the User Needs Survey

Appendix 8 - Principal Investigator and Project Assistant
Appendix 9 - What is UCPA?
Appendix 10 - Miscellaneous Quotes from Survey Respondents


Project Investigator, Jenifer Simpson
United Cerebral Palsy Associations

1660 L Street, NW, Suite 700, Washington, DC 20036
Telephone: (800) USA-5UCP or (202) 776-0406 Fax: (202) 776-0414


This is a publication of the Rehabilitation Research Engineering Center on Universal Telecommunications Access, which is funded by the National Institute on Disability and Rehabilitation Research under grant number H133E50002. The opinions contained in this publication are those of the grantee and do not necessarily reflect those of the Department of Education.


50 Years of No Special Reason

The day and hour had finally arrived.

This was to be the day the consulting speech pathologist was going to let us know when Vi was finally going to get her augmentative communication system.

Anticipation loomed like the hot sticky July air, which pervaded her unit cubicle, where we all had gathered to hear the news.

Five minutes into his polite but rambling recitation, though, it became apparent that the only news he had for that day was no news at all:

A glitch had developed here or there, a microswitch had failed, a proverbial monkey wrench had been thrown in the works again.

Nothing new.
Proverbial monkey wrenches always had a strange magnetic attention to Vi.

They seek her out and then boomerang in God only knows how many directions.

So, it must have come as quite a surprise to him when I asked how much longer it'd take to get back on track this time.

"Why," he quizzically replied, "is there any special reason for all the rush??"

"No, no special reason," I said, in a mute sigh only Vi could understand.

"No, no special reason at all..."

"Except that she has had 50 years of no special reasons."

From "In A Struggling Voice: The Selected Poems of Robert Williams."
A publication of United Cerebral Palsy Associations, Washington, D.C., 1989.


SURVEY SUMMARY

This report discusses the results of a study designed to examine how people with speech disabilities utilize telecommunications technology and to suggest ways for further improvements.

According to the National Institute on Disability and Rehabilitation Research, there are 2.5 million people in the United States whose speech is difficult to understand. Of that number, 237,000 are unable to have their speech understood and 2,284,000 have a functional limitation in speech.*

People with speech disabilities often are unable to use existing voice telephone networks because of a lack of accommodation made to speech disabilities. There is a need to compile, assess, and review how individuals are utilizing existing services and equipment in order to shed light on potential applications, to disseminate new solutions, or further develop current solutions to access problems. In particular, the development of interfaces by electronic alternative and augmentative communication devices with the national information and communications infrastructure needs to be addressed due to the rapidly evolving scale and scope of both the national information infrastructure and the increasing use of speech augmentation devices and services.

Under a subcontract with the Rehabilitation Engineering and Research Center on Universal Telecommunications Access, United Cerebral Palsy Associations (UCPA) conducted a survey examining one specific access issue: barriers in electronic communication for people with speech and physical disabilities. Based on these findings, solutions and strategies are suggested to act as both guidance and an approach to resolution of problems for industry and the appropriate regulatory agencies.

The work of the survey was accomplished by conducting a preliminary needs assessment for people with significant speech and motor disabilities as part of a larger research initiative on universal telecommunications design objectives research. The UCPA assessment built into its methodology an approach that permitted people with multiple disabilities to participate as respondents in ways that effectively accommodated their speech and concomitant motor disabilities. The methodology also included a review of survey materials by people with speech and motor disabilities before dissemination. This meant making the survey instruments easy to complete with "yes" or "no" answers that could be circled or checked, or providing a number of prompted responses that could be selected. Additionally, extra space or an "other" category was provided for thoughts and suggestions.

A letter and preliminary survey request were sent to 1,673 individuals asking if they would participate in a larger survey questionnaire (see Appendix 1). The final survey instrument was available in hard copy or ASCII format, and could be returned in either a postage-paid addressed envelope, by fax, or by e-mail. One hundred people completed the questionnaire--68 adults and 32 parents whose children use speech devices. The survey assessed needs, attitudes, and satisfaction with their use of current communications technologies, and their understanding and use of communications technology equipment. The survey was open-ended enough to uncover innovative locally-based solutions to communications barriers.

The preliminary needs assessment was conducted by UCPA Principal Investigator Jenifer Simpson and Project Assistant Helen Rader. UCPA developed the survey instrument, collected the data, summarized the information gathered, and developed strategies and recommendations from the data. UCPA is ensuring that survey results are compiled into formats for further use by consumers, by industry groups, legislators, advisory bodies, etc.

* From "Americans with Disabilities 1991-92," Bureau of the Census Report, U.S. Department of Commerce Economics and Statistics Administration, 1993.


SUMMARY OF RESULTS

  • Two-thirds of the survey respondents have significant difficulty using the publicly switched voice-based telephone network.
  • Two-thirds of survey respondents find essential the use of a speaker on their telephones.
  • More than one third reported disconnection, or being hung up on by the called party, when making local calls.
  • Fifty-six percent of the adults said that they have never made a 411 call on their own behalf.
  • One quarter of all survey respondents indicated how important use of augmentative and alternative communication (AAC) devices are to speech expression about medical conditions (asking questions about conditions, getting treatment, etc.).
  • Fifty-six percent of the adults with disabilities who used fax had a computer to link to and operate a fax machine.
  • Only 12% of the adult respondents and 3% of parents answering the survey for their children indicated that they knew how to use a TTY, even though Telephone Relay Service (TRS) was mandated by Congress to address both hearing and speech disabilities.
  • More than three-quarters expressed a desire to use the Internet.
  • Satisfaction level with electronic mail was very high, with an average score of 8.4 on a scale of 1 to 10 (with 10 being "I like e-mail very much" and 1 being "E-mail falls very short in meeting my needs"). This compares to a 6.5 average for people who use fax machines, and an average of 4.1 for those who use the telephone.
  • When asked to choose one communications technology (phone, fax, TTY, or e-mail) over another, people with severe speech disabilities overwhelmingly chose the telephone over fax, e-mail, and TTYs. Despite difficulties using the telephone, it is more available than other electronic forms of communication.

SUMMARY OF RECOMMENDATIONS

1. Providers of voice telephony services should consider how difficult their service is for use by people with speech disabilities who use alternative and augmentative communication devices. Phone service providers should address new or convergent ways to deliver service.

2. Because voice telephony requires considerable personal assistance supports for people with speech disabilities who use alternative and augmentative communication devices, providers of such services should address this need through accessible product and service design.

3. Providers of voice telephony and information services, e.g., e-mail and voice service, should realize that people with severe speech disabilities utilize both services as essential ways to communicate. Consideration should be given to packaging the services together.

4. Designers of telephone devices and services should consider at the outset of design the physical accessibility needs of people who use alternative and augmentative communication devices.

5. Designers of telephone devices and services should consider the amount of expenditure willing to be made by people who use AAC devices. Designers should consider building in access or access modalities that can easily access AAC devices.

6. Providers of communication devices and services should consider alternate ways to finance devices and services for people with severe speech disabilities if they wish to market to this group, which is at the lower end of income scales. For instance, longer payment cycles, discounted rates, lower interest rates, allowing public supports as income in assessing credit, and permitting combinations of public and private income supports may be ways to ensure that this group gets the information technology (equipment and services) it needs.

7. As long distance service and directory calls appear frequently require operator assistance, providers of long distance and information service should alert and train operators in how to handle these types of calls.

8. Researchers, relay services, and regulatory agencies should address disconnection experienced by users of alternative and augmentative communication devices.

9. Providers of emergency services should realize that service utilization is problematic for users of AAC devices, and should devise solutions, both technological and in staff training area, to meet this customer demand.

10. Further investigation into the nature of disability-related costs for telephone service is needed.

11. Directory assistance operators need training on calls presented to them by AAC users, and this service provision needs to accommodate to the keyboarding time required by AAC users.

12.1 Information about users of AAC devices should be incorporated into TRS training curricula for communication assistants.

12.2 Providers of relay service should do a better job of outreach with the speech disabled community..

12.3 Speech therapists and other professionals (e.g., school personnel and rehabilitation personnel) should advise parents of children with speech disabilities and the adults they work with that telephone relay services exist and can be utilized as an alternative access mode.

12.4 Manufacturers should address convergences between TTYs and AAC devices.

12.5 Speech-to-Speech TRS service should be offered nationwide. Speech clinicians should be thoroughly trained in TRS options, electronic mail, and other telecommunications technologies that are readily accessible to people with speech and motor disabilities.

12.6 People who use AAC devices should use relay service, especially hearing carryover, to explore if this service meets some of their communication needs.

13.1 Building designers and providers of telephone service in public areas should heed the needs of those who use AAC devices by providing personal assistance services or otherwise designing better physical access.

13.2 Manufacturers should develop a telephone device that is portable for wheelchair users and that works with AAC devices.

14. Researchers in AAC devices and on speech disability should widely disseminate information on research, results, and applications that they develop so that consumers have access to new developments and so that manufacturers of devices become aware of new developments.

15. Manufacturers of AAC devices should confer in an organized fashion, and work in conjunction with designers, developers, and manufacturers of other communication devices to increase compatibilities, develop convergences, and create standardization that assists consumers.

16. As fax machines are best able to be used when linked to a computer, designers may want to consider activation of their devices by AAC devices directly if they wish to market to this group.

17. Design fax machines better for people with speech and motor disabilities.

18. Because of AAC device users' high satisfaction with e-mail and their strong desire to use computers as a tool for communication, electronic information transmission networks should be universally accessible and usable, and at affordable rates for people with speech disabilities.

19. Banking by computer would likely be very useful to people with severe speech disabilities as they have concomitant physical disabilities. Banks should market this service on-line to people with speech and physical disabilities.

20. Regulatory agencies should make voice telephony more accessible and usable by people who use AAC devices if the promise of universal access is to extend to this group of consumers.

21.1 Providers of services and equipment should market new or upgraded telecommunications products and services to people with disabilities and their families via traditional disability venues and, in particular, through the people and social service infrastructures that address the needs of people with disabilities.

21.2 Information about products and services could also be disseminated through disability services agencies (such as UCPs or related organizations) that work with families of people with disabilities in addition to AAC community networks (e.g., Hear Our Voices, a national organization of users of AAC devices, or Augmentative Communication On Line Users Group [ACOLUG], an electronic community of AAC device users).


INTRODUCTION

"Being in a wheelchair is so restrictive, I often feel mechanical. Yet, my computer has finally opened up my years of silence. Having my own phone gives me a fantastic sense of independence. It is so amazing."  -- a 50-year-old woman with multiple severe disabilities after securing an electronic augmentative and alternative communication (AAC) device.

This report discusses the results of a study designed to (1) examine how people with speech disabilities utilize telecommunications technology and (2) suggest ways for further improvements.

There are 2.5 million people in the United States whose speech is difficult to understand, according to the National Institute on Disability and Rehabilitation Research. Of that number, 237,000 have a severe speech disability and 2,284,000 have a functional limitation in speech.*

Individuals with speech disabilities vary greatly in their ability to produce speech. Difficulty with production of speech is a factor in a variety of disabling conditions. Speech disabilities can be permanent or temporary, chronic, stable or fluctuating, or improving. Examples of people with speech disabilities include those healthy individuals who vary in their lack of ability to speak due to laryngectomies, cerebral palsy, or other neurological or psychological conditions. Speech disability is not necessarily an indicator of illness or linked to cognitive or language disabilities. Speech disability may be an indicator of other physical conditions, and can be associated with other physical disabilities. Those with very limited speech ability, that is, no ability to produce intelligible or recognizable words, are also likely to experience manifestations of physical disabilities, e.g., also have fine or gross motor disabilities.

It should be noted here that speech is a muscular process linked to a person's oral motor skills. The human capacity to produce sound is different than the capacity to produce language. Confusing the two capacities leads to the misconception that speech is dependent on intelligence. Language is a cognitive process of the brain whereby it organizes sounds into words and words into sentences by a system of rules. Use of AAC devices by those with impairments in oral motor skills points to the separate nature of the two processes, and also underscores the lack of correlation between inability to produce speech sounds and level of cognitive ability.**

Individuals with speech disabilities may utilize electronic communication devices, often referred to as augmentative and alternative communication (AAC) devices or alternative communication devices (ACDs), which output "a voice" for the individual. These range from simple digital or analog recording systems to highly sophisticated devices utilizing linguistic software. Other devices include speech amplifiers, artificial larynx technologies, or other medical devices developed specifically for an individual to produce speech-like sound. People with speech disabilities may also use other modes of communication such as e-mail, telephone, fax, or hearing carryover and voice carryover services provided in the nation's publicly switched networks via telephone relay service (TRS). In some states, Speech-to-Speech services are also available via the TRS network where trained communications assistants voice for people with disabilities.

Addressing speech disabilities in design development of technology or new technologies could mean assessing how speech sounds are carried through devices and networks. It may mean building in options for alternate modes of communication that may better serve the desired outcome. At all times, it means maintaining awareness of humans' range of speech ability.

People with speech disabilities often are unable to use existing voice telephone networks because of a lack of accommodation made to speech disabilities. Many forward-thinking advocates for people with speech disabilities believe a digitally based telephony network could provide technical solutions if the electronic intelligence built into current communication devices were considered and built into the design of the nation's telecommunication infrastructure. Might people with speech disabilities benefit from advanced or enhanced telecommunications equipment and services, such as a more direct digital connection to AAC devices, in order to search for or maintain employment, attend school, and socialize?

There is a need to compile, assess, and review how individuals are utilizing existing services and equipment in order to shed light on potential applications, to disseminate new solutions, or further develop current solutions. In particular, the development of interfaces by electronic alternative and augmentative communication devices with the national information and communications infrastructure needs to be addressed due to the rapidly evolving scale and scope of both the national information infrastructure and the increasing use of speech augmentation devices and services.

As part of a subcontract with the Rehabilitation Engineering and Research Center on Universal Telecommunications Access, United Cerebral Palsy Associations (UCPA) conducted a study examining barriers to telecommunication for people with speech and physical disabilities. The study's objectives were threefold:

1. To develop and implement a preliminary instrument and methodology to assess consumer needs, attitudes, and satisfaction in their use of current communications technologies, in their understanding and use of communications technology appliances, and to uncover innovative locally-based solutions to communications barriers.

2. To discover how consumers who are competent with electronic Alternative and Augmentative Communication (AAC) devices utilize existing and emerging communications technology, for what purposes and in what settings, and directions that should be taken to advance communication systems and to educate consumers.

3. To suggest strategies and recommendations of strategies for utilization as a resource for industry development so that compatible and complementary private sector development can be initiated based on existing and innovative utilization.

This discussion looks at the findings from results of a "snapshot" of people who use augmentative communication devices and who willingly participated in the survey work. This is not necessarily a representative sample of people with speech disabilities or necessarily representative of people who use augmentative communication devices. Among adult respondents in particular, it may be biased toward people who are well educated and motivated to improve communication accessibility.

* From "Americans with Disabilities: 1991-92". Data from the "Survey of Income and Program Participation," by John M. McNeil, Bureau of the Census Current Population Reports, Household Economic Studies, U.S. Department of Commerce, Economics and Statistics Administration, 1993.

** Personal communication, Dr. Murray Goldstein, executive director, United Cerebral Palsy Medical and Research Foundation, 1993.


METHODS

UCPA first identified a list of groups of respondents with significant speech and motor disabilities. This list included known AAC users, their families, and advocates. These names and addresses were compiled from various small databases located in the national office of UCPA in Washington, D.C. This included board and membership of Hear Our Voices, and people at UCPA affiliates with a demonstrated interest in speech disabilities or with a family member with a speech disability. It also included interested people from on-line support networks such as ACOLUG and VOICE NET. The database also included people from a UCPA Supported Employment Project, and names of individuals indicated by some manufacturers sales representatives who might be interested in responding to such a survey.

UCPA then developed an initial screener questionnaire that ascertained various user profiles and that generated an appropriate pool of people from which to conduct a more in-depth survey. Because the respondents were multiply disabled, options for completing the survey were offered: by e-mail; fax; telephone; or through person-to-person interviews. The initial user profile pilot instrument asked respondents how they would like to participate in the larger survey. UCPA delivered the initial one-page "Invitation to Participate" screener tool through a variety of means to ensure a significant number of users conversant with electronic communications technologies would participate. On-line posting, a targeted mailing, and announcements at conferences were used.

UCPA developed a 15-page survey instrument after responses to the initial screener questions were reviewed. This questionnaire covered telecommunications utilization and barriers to access. The information was collected utilizing the survey through on-line collection, telephone, fax, and written follow-up, as appropriate.

Analysis of responses was augmented by follow-up telephone calls and faxes to selected respondents to ascertain and clarify data generated from written and other responses to the survey. UCPA developed a comprehensive report of how AAC device users currently utilize existing technologies, including recommendations for technology-based strategies for change. The listing and recommendations are intended to function as a resource for development of prototypes.

UCPA developed a detailed 15-page survey instrument after responses to the initial screener questions were reviewed. This questionnaire covered telecommunications utilization and barriers to access, and collected anecdotal information for purposes of analysis. The information was collected utilizing the survey through on-line collection, telephone, fax, and written follow-up, as appropriate.

Analysis of responses was augmented by follow-up telephone calls and faxes to selected respondents to ascertain and clarify data generated from written and other responses to the survey. UCPA developed a comprehensive report of how AAC device users currently utilize existing technologies, including recommendations for technology-based strategies for change. The listing and recommendations are intended to function as a resource for development of prototypes.


HOW THE SURVEY INSTRUMENTS WERE DEVELOPED

Preliminary Search for Participants

To accomplish the goals of the research project, it was essential to create a list of people with speech disabilities who would be willing to participate in an in-depth survey. Our concern was to reach these individuals directly and to avoid, as much as possible, the use of proxies.

The initial user profile instrument was piloted with two highly knowledgeable and literate consumer advocates. Changes were made in the final survey instrument based on their suggestions.

A mailing list of possible respondents was put together after a master list of 1,788 people was compiled. The master list was developed primarily from the membership of Hear Our Voices, a national non-profit group of people who use electronic augmentative communication. The list also included individuals who had indicated to UCPA an interest in speech disabilities, were recommended to UCPA by speech and language and other professionals, and through UCPA affiliate contacts. From the initial 1,788 names, 115 people were removed because they lived outside the United States.

The initial mailing of 1,673 included an invitational letter and a one-page preliminary questionnaire (see Appendix 1). In response to the letter and preliminary questionnaire, 148 people said they were willing to complete a longer questionnaire. Forty-five people indicated that they did not want to participate in a longer survey, and there were seven responses from individuals or agency representatives who said they would pass along the survey to appropriate people. Two hundred eleven envelopes were returned because of incorrect addresses.

Thirty-two parents whose children under the age of 18 use speech devices indicated a willingness to answer the questionnaire. More adults with speech difficulties were added to the list of those willing to participate in the longer survey when they learned of the survey from the first mailing, through word-of-mouth, and through participation in conferences by our advisory members.

Of the 148 positive responses to the initial screening letter, not all sent back the longer survey. The final 100 survey respondents included many from the 148 as well as those referred to UCPA, such as from the seven responses from individuals or agencies who passed along the survey. Additionally, the final 100 responses used for the report included several late entries by people who wanted to participate after learning about the survey at a conference. Some respondents were inappropriate because they were not users of augmentative communication, they did not answer enough survey questions to be counted, or their answers were unusable, e.g., illegible.


Field Instrument Development

Development of the final survey instrument involved multiple reviews. More than three iterations of an in-depth survey instrument were piloted. At each stage, an advisory group of people with speech disabilities, or people with an interest in speech disability development, reviewed the questionnaire. Modifications were made based on this feedback. Of great concern to reviewers was the length of the survey and the amount of time it would take to complete it. This was of particular concern because the target population was not only severely disabled in speech but also in fine motor abilities. Several people made valuable suggestions about the questions' content, including a suggestion by Barry Romich, president of Prentke-Romich Company, to develop questions that addressed "medical necessity" and health and safety issues.

Resolution of the inclusion of questions that requested personal information took several weeks to finalize. Several members of the ad hoc advisory group, which was made up largely of people with speech disabilities who use augmentative communication devices and who have significant physical disabilities, believed some questions, including those about income and living arrangements, were either "rude," "inappropriate," or "not necessary." As a result, the survey designers relegated personal information questions to one page at the end of the survey. Additionally, this section of the survey contained a brief explanation as to why this information was needed. As a result, only very few responses were completed anonymously. Because of the suggestions from the ad hoc advisory group, the survey designers believe the final survey instrument elicited good quality responses.


SURVEY PARTICIPANTS

From the more than 100 surveys returned, a representative sample of 100 of the 15-page final survey was used for analysis. Respondents were people with disabilities deemed competent with electronic alternative and augmentative communication devices by the project investigator's assessment of answers to the initial request. These 100 responses included 68 adults as well as 32 children whose survey forms were completed by their parents. Parents completed survey responses for their children under the age of 18, although children marked the survey forms directly in several instances.

Responses from adults were divided into three categories, as preliminary survey work indicated that most of the people responding would be unlikely to mark survey responses without personal assistance services (PAS) due to their physical disabilities:

1. Twenty adults answered on their own behalf ("answering the survey questions by yourself, without assistance from another person").

2. Thirty adults dictated their responses to someone else filling out the survey ("assisting a survey respondent by marking down the answers as dictated by that person"). This group included people over age 21 who lived with parents, and whose parent performed the tasks of a personal care attendant or provided other care.

3. Eighteen adults' surveys were completed by another person ("marking the answers for the respondent based on your experience with that person").

People who completed the survey form without assistance from another person were more likely to be married, work more hours, and have a higher income. Responses from parents on behalf of their children were somewhat different than the adult group of responses: Household income was generally greater than the adult group, and answers often reflected lack of knowledge about information technology that could assist their children's activities. For both adults and children who use AAC devices, the survey served as an educational tool by raising questions about the use of fax, computers, and e-mail as alternative communication methods.

Who were the 100 Survey Respondents?

Although 107 survey responses were received, seven were not included in the survey because they were either received late or were completed by people without speech disabilities who misunderstood the survey instructions. The final 100 surveys used in the report reflect the project's intention to analyze how people who use AAC devices utilize electronic means of communications (telephone, fax, e-mail). A list of the AAC devices used by respondents is reported in Appendix 6.

 
Geographic Information

Respondents reside in 31 states, with 16 respondents not providing this information. The number of respondents from each geographic region is listed in the following table.

              Respondents by Geographic Region

Northeast

n=26

Midwest

n=28

South

n=20

West

n=10

No state given by respondent

n=16


Disability Information

Of the 86 survey respondents who chose to answer the profile information questions, 60% were male and 40% female. Seventy-five percent cited cerebral palsy as their disability, with 16% reporting "other severe disability" and 9% "other physical disability." All respondents had a speech disability, with two also reporting hearing and vision problems as well. Respondents either used their own AAC device or had access to one. Although not all survey respondents completed the income questions, survey respondents reported income as follows:

                            Household Income

Up to $14,000

45%

$15,000 to $25,000

14%

$26,000 to $40,000

20%

$41,000 to $65,000

11%

$66,000 to $100,000

6%

More than $100,000

4%

                             Source of Income

SSI

41%

Earned income

19%

SSDI

15%

No income at all

11%

Unearned income

6%

Other

8%

            Living Situation for Adult Respondents

Living with parents

26%

Living alone

21%

Living with spouse or partner

18%

Living with house-mates

12%

Living in a nursing home

9%

Living in other institutional settings

7%

Living in other settings, not specified

6%

                    Living Situation for Children

Living with both parents

72%

Living with one parent

15%

Living in a group home

13%


SURVEY RESULTS

The survey asked about ability to use the phone, and then asked a series of questions about how the phone could be used.

Ability to Use the Phone

The first question asked respondents if they were ever unable to use the phone. Seventy-two percent of the survey participants answered yes to this question, indicating that nearly two-thirds of the survey respondents have significant difficulty using the publicly switched telephone network. Twenty-eight percent of survey respondents answered no to this question, perceiving their ability to use the telephone network as closer to average use.

For the most part, survey respondents reported on telephone usage at home, although other environments were included. Phone usage was reported as follows: 78% of all respondents reported using the phone where they live; 18% reported using the phone at work; and 12% reported using the phone "at school/training/university."

One AAC device user believed a lack of knowledge about speech devices among the general population was to blame for the problems encountered when using the telephone. However, another respondent noted problems with people who are familiar with AAC devices. The respondent, who used an AAC device daily at work, stated:

Just last week I called a special education administrator, and his secretary was very rude and didn't have any patience and said things like, "What? I can't hear you. Excuse me. Are you there?" What is really funny is that I told her boss--once I got through--and he told me that he gets several calls from users of AAC devices, and that the secretary is very familiar with the sound of such devices! However, the special education administrator did not offer to speak to the secretary and remind her to be more patient on such calls.

A parent mentioned an incident at a facility that her child regularly attends where one might expect greater sensitivity by the staff:

One time my son didn't have his device with him and went to call for transportation home. The dispatcher didn't understand him so he called home and mom called the transportation person for him.

However, when adults were asked if they could "use the phone whenever you want to as long as you have a speech communication device," 49% of the adults said yes and 41% said no, indicating that, for many but by no means all, a speech device facilitated use of voice telephony. In the case of children, facilitation did not necessarily occur, with 18 parents saying no on behalf of their children and 10 parents responding yes.

Overall, among both children and adults, 46% said they could use the telephone if they had a speech device. Forty-three percent said they could not use the telephone with a speech device. Of those who said they could not, the largest percentage (16%) were adults who dictated their responses to the survey questions, indicating a need for personal assistance as well. This was echoed by the parents of children using AAC devices who said their children could use the phone whenever they want with a speech device (18%).

Recommendation: Providers of voice telephony services should consider how difficult their service is for use by people with speech disabilities who use alternative and augmentative communication devices. Phone service providers should address new or convergent ways to deliver service.


Strategies for Using the Telephone

A major focus of the survey was to find out how people with significant speech and motor disabilities use the phone despite reporting inability to use the telephone. One question addressed the difficulty of using the voice network by asking, "Do you need personal assistance (paid or unpaid) to use the phone?" Seventy-one percent reported yes and 29% said no.

The survey asked about this dependence upon another person to assist with the phone by asking how the assistance was provided. The most prevalent type of assistance provided by another person was dialing, with 61% of survey respondents reporting that another person dialed the number for them. Both adults and children's responses are included. (See Figure A)

Fifty respondents indicated that personal assistance was required for "talking," with 43 indicating interpretation was provided by the personal assistant. Forty-six people reported that someone else had to hang up the phone for them. Forty-four respondents indicated that during the call itself someone had to write down messages and notes for them. Twenty-six people reported that the personal assistant does "everything to set me up, and I talk with my communication device without any assistance during the call itself."

Figure A - Telephony: How Personal Assistance Is Used by Persons with Severe Disability

Figure A - Telephony: How Personal Assistance Is Used by Persons with Severe Disability - Graph
[Numbers indicate number of respondents who checked off use of Personal Assistance Service (PAS). More than one usage was selected in most cases by all respondents. (n=100)]

Recommendation: Because voice telephony requires considerable personal assistance, providers of such services should address this need through more accessible product and service design.


Other Strategies Used by People with Speech Disabilities

The survey asked how people with speech disabilities communicate using the phone despite the barriers they encounter. The four main strategies were getting someone else to make a call (45%), writing a letter (18%), and using e-mail and fax (11%).

Figure B - Strategies Used by People with Speech Disabilities
Figure B - Strategies Used by People with Speech Disabilities - Graph
[A majority of survey respondents answered this question. Numbers do not add up to 100% as more than one answer was selected by some respondents. (n=100)]

The fact that means such as writing a letter, using e-mail, and using fax were utilized fairly frequently gives some indication of a need to exploit text communications. (See also the discussion on the use of e-mail.)

Recommendation: Providers of voice telephony and information services, e.g., e-mail and voice service, should realize that people with severe speech disabilities utilize both services as essential ways to communicate. Consideration should be given to packaging the services together.


Use of Telephone Features

It is clear that using the telephone presents a physical barrier for people with speech and physical disabilities. Many phones have specific features that are utilized by people with speech and physical disabilities that can assist them in making calls. The survey asked, "Do you use a phone that has a speaker/microphone?" Sixty-four percent answered yes and 26% answered no (10 respondents did not answer the question). Automatic dialing is another telephone feature that is essential for some users of AAC devices. One respondent stated, "I have a constant problem getting the wrong number. If I dial the wrong number people get bothered."

The importance of automated features became readily apparent when the survey asked, "What features in the phone do you use to accommodate to your disability?" More than two thirds of survey respondents find the use of a speaker on their phone essential, with 68 respondents saying they use one to make calls. Fifty-six percent marked programmed numbers, and 48% marked automatic dialing as features they use. Forty percent marked the redial feature and 31% use the volume control feature. Twenty-six percent use big buttons, and 14% use a headset. Another 15% selected other solutions, which include use of a "puff switch" (which is operated by exhaling into the mouthpiece of a device that then mechanically activates a device), "phone and dial tones programmed into my Liberator," "amplifier from Radio Shack," "voice activated answering machine, and "use of a TTY".

Figure C - Features Utilized by Persons with Speech and Motor Disabilities
Figure C - Features Utilized by Persons with Speech and Motor Disabilities - Graph
[Numbers indicate number of respondents who checked off use of these features on phones. More than one usage was selected in most cases by all respondents. (n=70)]

People with speech and physical disabilities use features like programmable numbers and automatic dialing or redialing that are built into the telephone itself. While it is doubtful that manufacturers of these devices thought of this population when they incorporated these features into their equipment, these kinds of software features are desirable for people with speech and physical disabilities who seek to optimize their own fine motor control and minimize the need to touch buttons and switches.

Recommendation: Designers of telephone devices and services should consider at the outset of design the physical accessibility needs of people who use alternative and augmentative communication devices.


Cost of Adaptive Equipment

Survey participants were asked, "Have you bought specialized equipment in order to use the phone, e.g., headsets, other adaptations?" and were asked to specify which. Thirty-two percent of the survey participants said they had bought equipment while 61% had not. Those who answered 'yes' were asked how much they spent and what they bought (see Figure D and the list of items that follows). Among the 22 who responded to this question, the mean expenditure was $551. The cost ranged from $30 to $4,000, with a median of $75. Three people reported spending more than $2,000 on special equipment. One respondent noted spending "$5.15 a month rental from the phone company (for a TTY)" and another stated that "work paid (for it), not sure (how much)."

Figure D - How Much Spent to Make Phone Work by Persons with Speech and Motor Disabilities
Figure D - How Much Spent to Make Phone Work by Persons with Speech and Motor Disabilities - Graph
[Twenty-two survey respondents reported a dollar figure on how much they spent to make the phone work for them. n=22]

Respondents listed the following as items bought in order to use the phone, grouped by category of function:
Speakerphone (8 respondents)

In respondents' words: "External speaker; extension speaker; speakerphones; phone company got me a speakerphone; bought a speakerphone; speaker at parents' home; bought cheap speakerphone; speakerphone, we don't use much, but didn't work well."

Telephone Device (4 respondents)

In respondents' words: "Bought a sip-n-puff telephone; Freedom Phone, AT&T phone and guard to dial; purchased several phones but none of them work right all of the time; we got a TTY." 

Other Solutions (7 respondents)

In respondents' words: "Cassette recorder; hooked up to PC; memory dialer; switch-activated; bought headsets; bought some other adaptations; bought headset, big buttons, amplifier. I need a better speaker for the Liberator to work with it"

One respondent noted that the expenditure to use the voice telephone incorporated the price of an electronic communication device because this person would prefer to use a word board instead of a voice output device when speaking by telephone. The respondent stated that, "including the cost of two communication devices, I have spent $20,000 over the years."

Recommendation: Designers of telephone devices and services should consider the amount of expenditure willing to be made by people who use AAC devices. Designers should consider building in access or access modalities that can easily access AAC devices.


Paying for Equipment

Respondents were asked how their equipment was paid for, including any equipment purchased by people with speech and physical disabilities. Payment sources were as follows:

  • out-of-pocket
  • Medicaid
  • Vocational Rehabilitation
  • other public sources (e.g., mental retardation-developmental disability agencies, Tech Act programs)
  • other private sources (donations, UCP affiliates)
  • local Education Agency
  • employer

How people with severe speech disabilities pay for equipment is fundamental to access. Answers to this question confirmed what many in the field of disability have asserted: that individuals with disabilities pay for a lot of equipment themselves (out-of-pocket, 38% of survey respondents) but that public sources (e.g., Medicaid, Vocational Rehabilitation, Local Education Agency) provide a major source of funding (53% of respondents).

How Persons with Speech Disability Usually Pay for Equipment:   (Percent of respondents)

  • Out-of-pocket: 38%
  • Medicaid: 34%
  • Vocational Rehabilitation: 9%
  • Other public: 6%
  • Other private: 6%
  • Local Education Authority: 4%
  • Employer paid: 3%

[In several instances, combined resources paid for equipment, e.g., employer and out-of-pocket or Vocational Rehabilitation Agency and out-of-pocket. (n=100)]

Recommendation: Providers of communication devices and services should consider alternate ways to finance devices and services for people with severe speech disabilities if they wish to market to this group, which is at the lower end of income scales. For instance, longer payment cycles, discounted rates, lower interest rates, allowing public supports as income in assessing credit, and permitting combinations of public and private income supports may be ways to ensure that this group gets the information technology (equipment and services) it needs.


Use of Operator Assistance

Survey respondents reported using "operator assistance" or "dial 0" to make calls, with long distance calls needing this assistance most. Local calls and 411 information service calls also required operator assistance (see Figure F). Local toll and 911 emergency calls were less likely to involve operator assistance as reported by survey respondents. Using "0 operator assistance" requires both pressing buttons and engaging another person who is likely to be unfamiliar with speech disabilities.

Figure F - Those using Operator Assistance (Dial "0") to Make Certain Calls
   Figure F - Those using Operator Assistance (Dial "0") to Make Certain Calls - Graph

[Bar indicates actual number of respondents who checked off utilizing operator assistance to make certain types of calls. Not all survey respondents answered this question as many likely would not contact an operator. More than one response was checked off by several participants. (n=47)]

The numbers indicate the option taken by people with speech disabilities when they do not have access to personal assistance services, and attempt to make the call on their own using the operator as a personal assistant.

Recommendation: As long distance service and 411 calls appear frequently to need operator assistance, providers of long distance and information service should alert and train operators in how to handle these types of calls.  


Non-Use of Various Phone Services

A significant number of respondents reported not using a number of telephone service the general population uses. The following bar graph reflects the numbers of respondents who reported not making certain types of calls.

Figure G - Never Make Certain Types of Calls on Own

Figure G - Never Make Certain Types of Calls on Own - Graph

[Numbers indicate respondents who checked off not using a particular type of service on their own, that is, without personal assistance service. More than one service was selected in most cases by all respondents. Note that 70% of survey respondents answered this category of questions and includes adults and children. (n=92)]

While it is not surprising that TV shopping and 900 services calls are not utilized by people with speech disabilities because making more essential calls is so demanding, not being able to easily access 911 emergency, home delivery, and police is a serious problem. Similarly, directory assistance service, taken for granted by people without speech disabilities, was checked off by 58 respondents; more than 50% of survey respondents do not use this commonly used service. Not calling for taxi service, reported by 64 respondents, likely due to difficulties accessing dispatchers, is a significant issue for this group of people who are unlikely to use their own private vehicles, and may rely on public transportation more often than people without severe disabilities. Conversely, the bar graph shows that local calls are calls most likely made by people with severe speech disabilities on their own and without assistance.

Recommendation: Providers or services that utilize voice telephony services should understand that utilizing their services is problematic for those with severe speech disabilities. Alternative methods of selling or giving their service should be provided, including being more sensitive to demand by this group.


Telephone "Hang-Ups": One Barrier

Being hung up on when placing a telephone call is a significant access barrier for people with speech and motor disabilities because of the number of "hang-ups" they encounter. Seventy-seven percent of the survey respondents answered the question, "Do you get hung up on when you try or have tried to make phone calls?" Of this group, 61% (or 47 respondents) reported this being a problem (see Figure H).

Figure H - Do you get hung up on when you try or have tried to make phone calls?

Figure H - Do you get hung up on when you try or have tried to make phone calls?

[n=77]

More parents of children answering the survey commented about hang ups than did adults answering the survey. One parent reported that "if (my) child answers the phone people hang up on him!" Another parent echoed this by stating, "When I answer the phone people who don't know me or my family hang up because my speech is so poor." A teenaged girl with cerebral palsy said, "My mom has to call the person first and let them know it is me who is calling or I get hung up on and that is frustrating for me because I want my privacy. Mom helps me but I want to do it myself." An 11-year-old boy with cerebral palsy reported that "Grandma hung up on me three times in a row!!"

Survey respondents were asked at what point a call was terminated by the other party. Of the 80 who chose to respond to this question, answers indicated that hang ups occurred "usually" for 11% (nine respondents), "rarely" for 45% (36 respondents), and "at the onset of the call" for 22.5% (18 respondents). Another 21.3% (17 respondents) reported they were hung up on "during the call, especially if the person doesn't know you." Parents reported more hang ups on behalf of their children than the adults who responded. One parent noted that hang-up was usual for a child making a call "unless it is a parent who is called."

Some respondents, in explaining why they didn't answer the questions about telephone hang-up, stated:

"I haven't used [the phone] much and then only with family."

"No [no hang-ups], because someone else dials or I used programmed numbers."

"I don't dial, my mom does."

"I get someone in my home to make the call for me" (adult who lives with parents).

Survey participants were asked if they were compelled to re-dial, when would they get through? Of those responding, 71% (34 respondents) said they would get through on the second try; 21% (10 respondents) said they would get through on the third try, and 8% (four respondents) would get through on the fourth try.

Recommendation: Researchers, relay services, and regulatory agencies should address hang ups experienced by users of alternative and augmentative communication devices.


Kinds of Calls Where Hang-Up Occurred

Survey respondents reported hang-up in all categories of calls. The following graph gives the actual number of people who said they had been hung up on when making a certain type of call. Totals include parents answering for children, although primarily adults responded to this set of survey questions. Note that not all respondents answered all questions. More than a third reported hang-ups when making local calls.

Figure I - Hang-Ups: Types of Telephone Calls
Figure I - Hang-Ups: Types of Telephone Calls - Graph

[Numbers indicate number of respondents who checked off experiencing hang-up for a particular type of service when calling on their own, that is, without personal assistance service. More than one service was selected by respondents who answered this category of questions. (n=92)]

Particularly disturbing are reports by respondents about medical personnel hanging up on them, as reported by nine survey respondents. Hang up by 411 operators, reported by 12% of the survey respondents, indicates a problem that service providers could easily address during the training of 411 operators.

Recommendation: Train operators to expect calls from users of AAC devices.


Positive Response to a Proposed Network Solution to Hang-Ups

To combat telephone hang-up, participants were asked to respond to a proposal to address the problem. Respondents were asked, “Do you think a specific message or sound tone, advising the people you call as they pick up the phone, that would indicate you use a speech-making communication device would be a good idea?”

Eighty-two respondents answered yes, and four said no. One respondent commented with a very large exclamation point next to the word “yes” and another commented that this would be a good idea “...if it is my option to engage it.” This reflects an overall desire for independence and choice underlying many of the survey respondents’ written answers.

Figure J - Those Who Thought the System Should Have a Tone Indicator:
                 Percent Wanting a Tone Indicator

Figure J - Those Who Thought the System Should Have a Tone Indicator: - Graph

[Bar graph indicates actual number of respondents who thought the proposal a useful solution to hang-up. Note that 86% of survey respondents answered this question. (n=100)]

Survey respondents were asked, “Do you think people would respond to a public information campaign telling them about this sound or tone indicator for users of speech devices?” A clear majority (73 survey respondents) said yes. Eleven respondents said no, perhaps echoing the despair of two respondents who wrote:

"People [are] too wrapped up in themselves to care about others with special needs."

"Not everyone would respond. People that don't have the time or that don't care wouldn't respond."

Two respondents made recommendations for a pre-taped message in the network:

"I am speech impaired, please be patient."

"Please don't hang up on me. I'm a real human being."


Improvements Wanted Across Most Telephony Services

Another set of questions asked where respondents would like to see service improved. Between 39% and 50% of respondents called for improvements to local calls, long distance, and intrastate toll calls; home deliveries; calls for taxi service; calls to 911, 888, and 800 numbers; medical appointment calls; calls to police; and calls to 411. As most survey respondents answered the set of questions on what needed improvement in telephony, answers can be interpreted as percentage of response as well (see Figure K). The bar graph reflects a level of dissatisfaction with certain types of calls, despite the ability to make calls when persistent.

Figure K - Improvement Wanted in Services

Figure K - Improvement Wanted in Services - Graph

[Numbers indicate actual number of respondents who checked off improvement wanted in these areas. More than one "improvement in service" was selected in most cases by survey respondents (n=100). Note that a majority of survey respondents answered this question (56%).]

Recommendation: Providers of emergency-related services should realize that service utilization is problematic for users of AAC devices, and should devise solutions, both technological and in staff training area, to meet this customer demand.


Disability-Related Customer Service

Twenty-one of the 100 survey respondents reported "calling for technical service or installation or repair for your phone." Eighteen called for assistance specifically related to disability and accessibility. Of the 21, 83% said they got the disability-related assistance they needed.

Five people in the sample reported that they were charged an additional fee because it was disability-related. The average reported cost was $65. As installation and repair calls for phones generally go to the local telephone company, that the majority (83%) got the service they needed indicates good response.

Recommendation: Further investigation into the nature of disability-related costs for telephone service calls is needed.


Problems with Directory Assistance

A problem for people who use AAC devices is the ability to write or record numbers and information from directory assistance. Seventy-one percent of survey respondents reported that they could not write down the numbers from directory assistance or enter them in their device as the operator spoke. Sixty-five percent of the respondents said they have someone ready to assist them to do this, 15% quickly try to input to a computer via the keyboard on their speech device, and 12% reported practicing memory tricks in order to remember the number when spoken. Another 16% of respondents developed other strategies such as using a tape recorder to accomplish the task. Seventy-five percent of survey respondents said they would be interested in a device or service that recorded directory assistance numbers automatically for them.

When asked, "Do you take advantage of the phone service through directory assistance that allows you to pay an extra charge to have the phone number you requested automatically dialed?" 89% of the respondents answered no. The reasons for this non-use of the service included the following: "don't use directory assistance" (35%) and "it costs too much" (31%). Twenty-five percent gave "other reasons" without specifying, and 5% reported not knowing about the service.

Of significance is how few reported making calls to 411 directory assistance at all: 56% of the adults said they had never made a 411 call on their own behalf. Sixteen percent reported that they had been hung up on when making calls to 411 operators. Forty-six percent of adult survey respondents said 411 service should be improved for users with speech disabilities. One respondent wrote, "Operators of 411 and 911 are not understanding about speech devices."

Recommendation: Directory assistance operators need training on calls presented to them by AAC users, and this service provision needs to accommodate to the keyboarding time required by AAC users.


Lack of Knowledge about Telephone Relay Service

Respondents were asked if they use a TTY to access the network, and only 12% of the adult respondents indicated they did. Only 3% of parents answering for their children indicated TTY usage. Furthermore, many reported not knowing that Relay Services can be used by people with speech disabilities. This is significant, as the nation's telephone relay system was mandated by Congress to address both hearing and speech disabilities.

Figure L - Respondents' Knowledge About Telephone Relay Services (TRS)
Figure L - Respondents' Knowledge About Telephone Relay Services (TRS) - Graph

[n=91]

Twenty-five percent of the adults reported knowing how to use relay service, as did 9% of parents answering for their children. Most respondents--59% of the adult respondents and 62% of the parents--did not know that telephone relay service (TRS) is intended for use by people with speech disabilities as well as for deaf and hard of hearing people.

Figure M - Comparison of adults and parents knowing or not knowing how to make a relay call
Figure M - Comparison of adults and parents knowing or not knowing how to make a relay call - Graph

[A majority of survey respondents answered this question (n=86)]

The national telephone relay service provides an alternate network for communication for people with speech disabilities that is currently accessible to and usable by all people nationwide. Relay service operators provide personal assistance to those with other disabilities by voicing for people with hearing and speech disabilities. People with speech disabilities who communicate with speech synthesizers require voicing services to facilitate communication similar to deaf and hard of hearing people who use TRS.

Speech-to-Speech service is defined by the FCC as "a reduced form of telephone relay service," as is hearing carry-over and voice carry-over. It provides human voicers for both voice synthesizer users and people with moderate speech disabilities who have difficulty being understood on the telephone. Users access the service with speech synthesizers or their own voices. People can currently access Speech-to-Speech as a reduced form of relay service in California, and expansion of the service is pending in Maryland and likely in Wisconsin soon. Relay service is now only accessible for calls between a TTY user and a voice user but communications assistants or agents (who translate TTY output to voice and vice-versa) can also repeat the synthesizer output or words of the speech disabled person to whomever the person with the speech disability is calling. With hearing carry-over, a person with a speech disability listens directly to the other end user but responds by typing on a TTY, and relies on the communications assistant to speak the text as typed.

This service uses technology analogous to relay technology. Ironically, TRS now provides the equivalent of this service to people with moderate speech disabilities but only if they want to call a TTY user. Speech-to-Speech should not be confused with three-way calling. Three-way calling requires users to provide their own human voicers. Simply providing three-way calling alone is not sufficient, as very few people could have others acting as voicers available around the clock.

All potential Speech-to-Speech users either have speech synthesizers or speech that many members of the general public have difficulty understanding. Potential users could also be those with dyslexia or limited hand use (from cerebral palsy, head injury, degenerative conditions, or strokes) that preclude keyboarding adequate for effective use of current relay service.

Recommendation: Related to telephone relay service (TRS):

1. Information about users of AAC devices should be incorporated into TRS training curricula for communication assistants.

2. Providers of relay service should commit resources to conduct outreach with the speech disabled community.

3. Speech therapists and other professionals (e.g., school personnel and rehabilitation personnel) should advise parents of children with speech disabilities and the adults they work with that telephone relay services exist and can be utilized as an alternative access mode.

4. TTY manufacturers should address convergences between TTYs and AAC devices.

5. Speech-to-Speech service should be offered nationwide.

6. People who use AAC devices should use relay service, especially hearing carryover, to explore if this service meets some of their communication needs.


Using Public Phones

Sixty-two percent of respondents said they do not use public telephones. Only 18% use public phones--21% of the adult respondents and 12% of the children. Significantly, 63% did not think that speakers on pay phones would make the phones accessible. A 16-year-old girl with cerebral palsy stated that “public places are too noisy and speakers would only draw more attention to me.”

When asked why they cannot use public telephones, survey respondents noted that their fine motor disabilities made such phone usage very difficult (see Figure N). Not being able to insert coins or use a credit card slide were the main reasons selected by adult respondents. Some reasons point to a lack of accessibility, which should be addressed by the Americans With Disabilities Act: almost one third of the adult respondents (28) said there was no wheelchair access. Twenty-six cannot reach the dial pad. Twenty-seven respondents said they cannot line up their AAC device with the pay phone. "Privacy issues" and "not being able to get the operator" were also cited as reasons. Few checked that they could not wait or could not find phones in public places. One respondent noted, "I have trouble being heard when there is background noise."

The following figure lists, in descending order of importance, the reasons respondents cannot use public telephones. These reasons help explain, also, why use of a telephone is difficult, whether or not in a public place.

Figure N - Reasons That People with Speech Disabilities Cannot Use Phones in Public Spaces Figure N - Reasons That People with Speech Disabilities Cannot Use Phones in Public Spaces - Graph

[Not all survey respondents answered this question. Numbers indicate actual number of respondents who checked off suggested reasons why they did not use phone in public areas. More than one item was likely checked off by a respondent. (n=86)]

Adult respondents offered the following to an open-ended question that asked why they didn't use phones in public spaces:

  • "can't dial on own"
  • "no use of hands"
  • "don't use phones yet"
  • "an assistant makes call"
  • "no device to make call"
  • "can do only with Personal Care Attendant assistance"
  • "a TTY is all I need" 
  • "I don't have time [to use pay phones]"

Some of the parents explained why their children did not make calls in public spaces:

  • "user is scanner of speech device, too slow"
  • "not enough knowledge of making calls"
  • "impatient persons behind me in line"
  • "people don't like it when kids use pay phones"
  • "he listens, I interpret"
  • "he doesn't use the phone"
  • "some public places are too noisy to hear or to be heard in"
  • "rarely use public phones"
  • "needs assistance to use public phones, e.g., find them"
  • "it is too noisy to hear or be heard using the Liberator" 
  • "no, but it would be a help. Liberator does not always dial with all phones"
  • "I don't know how you would put money or card in phone. How would you turn phone on? How would you hang up?"

Several respondents discussed especially difficult or egregious circumstances regarding making calls. A respondent who works with a person with a severe speech disability stated, "I have a client who needs to call a cab daily. I needed (before the client got an AAC device) to call (the cab company) before he called to let people know he wasn't drunk or on drugs or anything."

Recommendation: Related to public telephones:

1. Building designers and providers of telephone service in public areas should heed the needs of those who use AAC devices by providing personal assistance services and otherwise designing better physical access.

2. Manufacturers should develop a telephone device that is portable for wheelchair users and that works with AAC devices.


Ideas for Telephone Devices and Services

Toward the end of the survey section on voice telephony, and to elicit further design ideas, another question, with prompts, asked:

What other more specific ideas to improve phone services and devices do you have so that they are more useful to users of speech communication devices? We need your dream phone thing here! Don't be limited by current technology or costs! For example, "I wish I could have a fax and phone combined into my speech device" or "Why can't I have all the vocabulary in my speech communication device built into the telephone itself?"

Almost half the survey respondents shared their thoughts about an ideal telephone by either checking prompts or writing their design ideas. The following table shows respondents' ideas.

Ideas for Improving Telecommunications Equipment

For Device - AAC related: [12 responses]

  • "Just need telephone capability more in or through communication device without needing 'hookup' or help from others."
  • "A telephone which could be built into a communication device."
  • "One that hooks in (easily) to phone line." 
  • "I wish the phone was part of the Liberator so I wouldn't have to have someone pick up phone and dial for me."
  • "Phone would be part of my desktop PC."
  • "I wish I could have a fax and phone combined into my speech device." 
  • "A cord to connect Liberator to the phone (like to the computer)."
  • "Phones in communication aids."
  • "How about a direct connection from communications devices to telephone?" "How about a hook up from my device to the phone so sound could go directly into the phone without the distortion of the speaker, but yet still go through the speaker so I can hear what I am saying?"
  • "I would love a menu-driven program that could be put in to the Liberator that would enable me to make calls."
  • "Program in phone numbers. Then all I would need to do is just open it to use the phone. I would like this phone to have a plug in for ear plugs and a window that would show the text that would give me more privacy." (20-year-old woman with CP.)
  • "I want my son to be able to meet his needs with large buttons, able to use speech communication device, ear phones, and have it located conveniently, with computer hook-up."
  • "Why can't my Dynavox BE A PHONE???!"

    Recommendation: Combine telephone and AAC device.

For Speech Quality: [seven responses]

  • "Why can't I have all the vocabulary in my speech communication device built into the telephone itself'?" (5 responses)
  • "More recognizable human intonation patterns with the voice."
  • "Sell a phone with built-in 911 message."
  • or "I live at [address]" or "I need my PA."
  • "Something with lots of pre-set numbers so I'm not limited to calling only one person wherein I have to use the single switch."

    Recommendation: Enhance voice synthesis capacity.

For Network Facilitation: [seven responses]

  • "People will be made aware of my disability before they are connected."
  • "Make Speech-to-Speech service nationwide, not just (in) California."
  • "I don't think having vocabulary built into phone works as we all use different means of vocabulary storage. It's better that vocabulary from Liberator can be transferred to phone."
  • "The phone needs to identify the user, even then many, e.g. Pizza Joe's, would hang up even with a view phone!"
  • "I guess it is for the device user to get real good. And to have your message be pre-stored." 
  • "Why can't I have all the vocabulary in my speech communication device built into the telephone itself?"
  • "It would be great to have a telephone that would interpret a communication sound by the individual and the phone would work."

    Recommendation: Develop network features for people with speech disabilities. 

For Public Phones: [three responses]

  • Have some public phones with infrared for my ACS controller and speakerphones." 
  • "Placement of the phones so there is access to them."
  • "Need interface connection from my LightTalker to ANY phone and pre-programmed phone numbers, and speaker instead of earpiece."

    Recommendation: Make public phones usable by people with AAC devices.

Other Ideas: [four responses]

  • "Need an auto message that says this is a handicapped person with a machine talking. Please listen carefully."
  • "Make voice or movement activated."
  • "Portable and affordable service so I could use it at my wheelchair all the time."
  • "Having a modular speaker that could be connected to any telephone--I would carry this speaker (lightweight) around."'

    Recommendation: Develop environmental aspects in design.


Upgrading Current Telephones to Facilitate Use by People Who Use AAC Devices

The survey also asked for opinions on the directions future telephone device design should take or how greater congruence of communication technologies would allow better use of the publicly-switched voice network for people with speech and mobility disabilities. Questions addressed both design of alternative and augmentative communication devices or "communication prostheses" and how they might better work with existing telephone and fax appliances. These survey questions addressed the following:

  • Problems with AAC devices and telephone
  • Ideal telephone design features
  • Desirable portable phone features
  • Ideas for telephone devices and services

Specific questions were posed to elicit design directions for device development by users of AAC devices as they used voice telephony. Seventy-two percent of the survey respondents answered "yes" to the question, "Are you ever unable to use the phone?" Twenty-eight percent said no. To get at the problems encountered by AAC device users in voice telephony, several questions were posed. The following tables isolate the problems, give recommendations for users of AAC devices, and discuss ideal features and devices. Convergence of utility between AAC devices and other information appliances is a key feature of respondents' desires.


Problems with AAC Devices and Telephones

"While there is probably little doubt that use of your communication device has most likely expanded your life and options, there is still a lot that must be done to improve the situation. What is your one most significant complaint about your speech communication device and using the telephone? Please be very specific such as "quality of voice output is bad and people can't understand it through the phone line" or "doesn't connect to phone directly" or "it is too heavy to carry about" or "lining up device microphone and telephone receiver is nearly impossible."

Problems reported by adults and parents of children who use AAC devices are grouped in Table 7.

                                                            Table 7
                AAC Device and Telephones - Problems and Suggested Solutions

Problem Areas Design Directions
Design Features:

WEIGHT--[ten responses]

"Too heavy and too bulky." "My Liberator is too heavy to carry around."

SIZE/USABILITY--[nine responses]

"'I can't hold the device." "My Liberator is too big for telephone booths and the public phones have no speaker phones."

SPEED--[eight responses]

"Speed of typing out what I want to say (is too slow)." "Hard to time responses." "People are not patient enough (to wait and listen)."

COMPATIBILITY (ACD)--[four responses]

"Device doesn't work with home phone." "Must put telephone receiver on top of ACD to have dialed numbers and messages picked up by phone."

Make AAC devices smaller and lighter, and easier to handle. Find ways to increase response time. 

Develop new ways to fit phones and AAC devices together.

Voice Output From Device: [12 responses]

"Quality of voice output is bad/is not good enough." "People can't understand (my device) through the phone line." "It can be difficult for people to understand. . .especially if they have never heard it before." "Hard to understand the Light Talker voice." 

Improve quality of voice output and transmission/reception across devices.
Network Related: [six responses]

"(Telephone) operators are untrained in speech devices and lose patience waiting." "My device is not fast enough for 911." "Some people think I am a recording so they hang up on me. . ." "People don't know what it is. " "When I am getting calls from strangers, they hang up as I turn on my voice." 

Develop or install network features or services responsive to AAC device users.
Programming Features: [six responses]

"It takes a lot of preparation to pre-program my device to make it work." "If Liberator is not pre-programmed, it is too slow." "Out of the last year and half it (link between device and phone) only worked the first six months."

Consider ability to access software via telephony that would interface with AAC device locally.
Connections: [five responses]

"Lining up the device and the receiver is nearly impossible or very difficult." "(Device) does not connect to phone directly." "Amplifier doesn't connect to phone directly." "No connection to phone." "Special equipment must be used to connect phone line to device."

Design phones to physically line up with AAC devices.
Costs: [two responses]

"Finances are tight and we can only get one special phone per patient."

Consider alternate ways of financing for devices that work with the phone system.
Convergence: [three responses]

"(I) want Liberator to be the phone." "Lack of suitable technology."

Collapse features of phones into AAC devices or vice versa.

Recommendation: Privately and publicly-funded researchers in AAC devices and on speech disability should widely disseminate information on research, on results, and on applications that they develop so that consumers have access to new developments and so that manufacturers of devices become aware of new developments.

Another question attempted to elicit further ideas to improve voice telephony for people who use speech devices.

Do you have any other thoughts about telephone devices or services that was overlooked in the survey so far or that came to mind? Please be specific. Feel free to address topics such as: materials, colors, connections, design, other "future" features.

Again, answers in Table 8 are ordered by the frequency of responses.

                                                                Table 8
                            Requested Design Features and Recommendations

Requested Design Features Design Recommendations
Size and Portability: [eight responses]

"Make (telephone devices) pocket size." "Make phones less heavy so can carry around for protection." "Smaller, lighter communication devices, with head phones for those with hearing loss as well." "Must be portable, lightweight, easily attached to chair, durable, water resistant, accessible by Liberator, covered by insurance funding, loud enough to hear in a crowd or able to adjust volume."  

Miniaturize telephone devices.
Connections: [seven responses]

"Need a connection to my Light Talker." "We could plug the speaker into where the handset is, some kind of easy jacking, that is if I had the time to connect this, maybe a magnetic connection. . ." "Big programming buttons." "Big button speakerphone with big programming buttons."

Consider connections and activators that are easy to use for those with fine motor disabilities.
Software Features: [three responses]

"Should have a warning thing that says you use AAC." "'I requested a scanning dialer through GTE but they said they didn't have the equipment. They also have limitations on types of phone I am allowed."

Network features should respond to AAC device users.
Multiple Disabilities: [eight responses]

"I wish all places I visit (friends/relatives homes) had speakerphones." "Pictures are needed for the mentally disabled nonverbal person to person could sign/point out what they want to say," "Small speaker to attach close to user's device." "Capability of speech from device to go to receiver without being spoken aloud," "Infrared to turn phone on and off. It is all so difficult. I guess a vision phone would help to identify the user who has a speech disability." "Portable speakerphone would be important." "Telephone company should charge less or give me free services." 

Consider consumer responses directly. 


Desirable Portable Phone Features

Seven percent of the adults and 19% of the parents who answered the survey said they have used or carried a portable telephone. Those who have used a portable phone and encountered difficulties cited the following problems:

  • "Went out of range."
  • "Costs too much."
  • "Hand-held too difficult to hold."
  • "Dialing one is impossible."
  • "Can't hold or dial it."
  • "I can't use it but my attendant can."
  • "Can't hold it decently."
  • "Can't dial on it or hold it to my ear."
  • "Doesn't work with AAC devices."
  • "Have to Velcro it to scooter, too little to pick up and hold, buttons too small, and it has no speaker."

The survey posed specific questions to elicit design directions for device development by users of alternative and augmentative communication devices. Overall, 41% of survey respondents answered yes when asked if they could imagine a portable phone working for them. Adults who answered the survey were more optimistic about this than parents, with 43% of adults saying yes compared to 37% of the parents. Thirty-eight survey respondents answered no to this question, and 21 respondents did not answer the question.

The question also included prompts: "Please list what features or design might make a portable phone work for you, e.g., infrared connection to my LightTalker, clip-on to wheelchair, etc." Respondents' answers follow, grouped by type of design feature.

                                                          Table 9
                            Portable AAC Design Suggestions and Recommendations

Design Features Preferred by AAC Users Recommendations
Component Features: [22 responses]

"Can be mounted to or clipped onto the wheelchair" (requested by 14 people). "A headset." "I wish cell phones had handles so that the units would be easier to hold. As it stands now, most of them are too awkward for me to hold." "Small, to attach to a wheelchair, easy to use on-off switch, microphone receiver." "Large switch and large buttons for access." "Big buttons." "Microphone or filter that adjusts for background noise." "Large number pads." "Have a speaker phone system that could be portable or attached to it."

Design with wheelchair users in mind.

Design so that devices do not require considerable fine motor control.

Design for environmental noise.

Miniaturize.

Connections: [18 responses]

"Infrared connection to my Lighttalker" (15 responses). "Speaker phone attached to my wheelchair with infrared access." "Hook onto Liberator with speaker, big buttons." "Connection to Lighttalker." "Accessible by Liberator using single or dual head switch (using row/column scan right now)." "Possibly infrared light would work." "Infrared connection to Liberator with speaker like an answering machine so the caller would be heard without earphones and could also hear person using ACD." "Puff switch operation as an option." 

Consider new ways of connecting and linking AAC to existing information appliances and devices.
Service Features: [11 responses]

"Sell cheaper models with access." "Type out audio info [as text]." "Lightweight." "ACD microphone and phone set would line up." "Simple switch dialing." "A button that would call for police." "Digital voice-activated." "It would have a speaker." "It would have low rates [as calls take longer for me]." "Big 911 button attached to wheelchair." "911 alert system would be nice." "Easily plugged into my communication device." "Telephone should work when in bed without the Liberator to call for help, with auto voice activated for totally handicapped."

Consider putting into network some software that could access features for users of AAC devices.

Design new device for 911 or other emergency/alert uses.

Programming Capacity: [10 responses]

"Memory dial." "All numbers I'd want plus emergency ones programmed on large push buttons with pictures of persons, or places on buttons" (3 responses). "Also use speed call via easy voice." "More auto dialing" (3 responses). "Autoprogramming from ACD." "Larger keyboard." "Infrared dialing from ACD."

Develop easily installable program packages.
Convergence: [7 responses]

"Have a phone in the more sophisticated communication aids..." "Would allow access through communication device with an auto dialer." "Designed with a speakerphone that would either be incorporated into Liberator or hooked onto it'." "A clip on the Liberator with speakerphone and easy voice access." "Infrared that would work with the Liberator or a portable one that would interface with my speech device."

Design with multiple device use in mind.