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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.
New Device: [2 responses]

"TTY in auto." "It works with a Liberator, with 20 memory numbers, with an auto message that says 'from a handicap person' and it clips to my wheelchair, very small, no buttons, very flexible antenna and low cost."

Design with other disability-specific devices in mind.

Recommendation: 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.


FAX

Of 94 people responding, 30% (29 people) said they used a fax machine while 70% (65 respondents) said they have not used a fax machine. The discussion that follows addresses responses from those 29 respondents who answered this section of the survey.

Fifty-four percent of respondents who used fax machines used fax at home, with 44% stating it was linked to a computer. Significantly, 56% of the adults with disabilities who used fax had the computer link,with the largest category of adult respondents being those with the most severe disabilities (33% of all the adults who responded or those who "dictated" their responses to the survey). Nine survey respondents said they used a fax machine at work. Forty-three percent said they could use a fax machine with help from another person. The average satisfaction level with fax machines was 6.7 on a scale of one to 10, with one being "Fax machines fall very short in meeting my disability-related needs." Only one person used a fax machine with special features to accommodate his or her disability; the fax machine had larger buttons and a lowered or separate keypad.

In answer to questions about why respondents could not and did not use the fax machine at work, they answered that it was physically inaccessible, reporting that the fax machine was "out of reach," "no one would assist them," or "it was too high on a shelf for them."

In answer to a question as to whether "problems with operating a fax machine at work had been brought to the attention of the ADA implementation staff person at work," two people responded yes and 27 said no. Twenty-one noted that they had used fax as a replacement for making a voice telephone call.

Recommendation: 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.


Ideal Fax Machine

Of the 29 survey respondents who reported using a fax machine, about one-half responded to the following prompt: "State what your dream fax machine would be."

Dream Fax Machine for Users with Speech Disabilities [ 8 respondents]

  • "It would be (attached to) my wheelchair!" 
  • "One I could use with no (personal) assistance."
  • "More accessible and interfaced with my LightTalker."
  • "Attached to my communication device."
  • "Large buttons, keypad with finger holes, pre-programmed numbers."
  • "An easier way to put in the paper pages."
  • "Every fax would be through a computer because it would be paperless."
  • "Activate fax machine by voice control (from my AAC device)."

Recommendation: Design fax machines better for people with speech and motor disabilities and develop convergences with AAC devices.


E-mail and Computer Usage

Use of E-Mail

Twenty-seven survey respondents said they used e-mail, with 25 respondents stating they used e-mail at home, and 15 using it at work. Satisfaction level with e-mail was very high. On a scale of one to 10, with 10 being "I like e-mail very much" and one being "E-mail falls very short in meeting my needs," the average response was 8.4. Compared to those who used fax machines and averaged a satisfaction level of 6.5, and to those who used the telephone, with an average satisfaction level of 4.1, e-mail rated highly as a means of communication for this group.

Figure O - Comparison of Satisfaction level by Technology Used (Scale of 0-10)

Figure O - Comparison of Satisfaction level by Technology Used (Scale of 0-10) - Graph

[Satisfaction level is an average of those who indicated they used the particular technology using a scale of 0-10, with 10 as "I like to use it very much." (n=27)]

Of those who used computer information services in the past six months, usage was described as follows:

  • General information (22%)
  • To "talk" (19%)
  • To get disability-related information (19%)
  • Job-related, i.e., to accomplish job tasks and to search for jobs (16%)
  • To meet people (12%)

Figure P - What People with Speech Disabilities used Computer Information Services for

Figure P - What People with Speech Disabilities used Computer Information Services for - Graph

[Few survey respondents had on-line access, although those who used this were enthusiastic (n=27)]

Other reasons given for utilizing computer-based information services included the following uses:

  • News (31%)
  • Weather (26%)
  • Other, not stated (15%)
  • Magazine subscriptions (11%)
  • Ordering household appliances (7%)
  • Stock or financial information (6%)
  • Travel tickets or information (4%)

Twenty-three respondents said they used the Internet to access different kinds of information.Weather information was selected by 26% of respondents of the 25 who had on-line services, which perhaps reflects a need that is generally met by the phone for people without speech disabilities. Other uses may reflect a trend to be taken up if more AAC users had computer link-ups, as stated by the 39 people who said they did not use the Internet but would like to do so. Only 10 said they would not like to "surf the net." A list of computers and computer equipment used by survey respondents is included in Appendix 6.

A significant number of those who completed the section on e-mail and use a computer wanted to become more involved with information services. When asked if they wanted to use the Internet, 77% of the 39 respondents answering the question expressed a desire to do so.

Of the 25 respondents who purchased Internet services, a significant number - 19 - subscribed to America Online. Of the 26 who said they had used e-mail as a replacement or substitute for the telephone, usage over the last six months averaged 132 times.

Recommendation: 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.


Use of Banking Services

Of the 68 adult survey respondents, only 5% reported using banking services, which require a telephone line and computer. However, 50% said they would use the service if they had a home computer or an upgraded model. Forty-four people said they would not use this service, and six were not sure if they would if they had access to it.

A question was posed about respondents' use of Automatic Teller Machines (ATMs): "If you do not use an ATM bank card, please check any below that apply or explain other reasons if not listed." The main reason given for not using an ATM was inability to insert the bank card into the machine. Secondary reasons were lack of wheelchair access and location.

Why ATM Bank Card Not used by People with Severe Speech and Physical Disabilities

  • Can't insert: 35%
  • No wheelchair access: 28%
  • Location: 23%
  • Other: 14%

[n=48]

Recommendation: 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.


Preference for Telephony by People with Speech Disabilities

When asked which mode of communication (telephone, fax, TTYs, or e-mail) is the easiest in general to use, 51% of respondents selected the phone. Despite reported difficulties, the telephone was selected over fax, e-mail, and TTYs at a high rate (see Figure R). This is likely because of the ubiquitous nature of the phone system compared to other electronic forms of communication, which may or may not be affordable and accessible to this group. One AAC device user stated, "It's not as if I can drag my PC around with me attached to my AAC keyboard" (which is set up to operate as the respondent's office computer). Voice telephone lines are accessible, despite not being highly usable by people who use AAC devices. For this reason, they are preferred over other communication modes.

Figure R - What is Preferred by People with Speech Disabilities

Figure R - What is Preferred by People with Speech Disabilities - Graph

Numbers indicate actual number of respondents who checked off what means of communication they preferred. Only one response was permitted per respondent. (n=70)

Reasons given for telephone preference:

  • "I have one and not the others."
  • "'I can get help with it."
  • "Access and help."
  • "I've been using it for years."
  • "Only one I have."
  • "It's there."
  • "I can get across the message."
  • "I can use stored numbers and my AAC device."

Reasons given for e-mail preference:

  • "Because it is easier for other people, and faster."
  • "Because I can do it."
  • "I don't need help."
  • "Easy to use."
  • "I do it by myself."
  • "Because it (my computer) is set up for me."
  • "Easiest to access as it's there."
  • "Because AAC device links to computer directly."
  • "Because I can use my Liberator to do it."

Reasons given for fax preference:

  • "I can pre-record the message."
  • "I have a record."

Reasons given for TTY preference

  • "Low rent."

Recommendation: Regulatory agencies must 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.


How to Market Technology to People with Speech Disabilities

One of the questions addressed how respondents learned about new technology: "How do you usually learn about a new kind of technology device or service? Check fewer rather than more." Therapists, friends and family, and technology exhibits for people with disabilities were the most commonly cited sources of information. Magazines and vendors of alternative and augmentative communication devices were tied as the second most popular source of information. Other sources, such as television or movies, technology exhibits for the general public, work, or on-line services were much less frequently cited.

Figure S - How People with Speech Disabilities Learn About New Technology Device or Service

Figure S - How People with Speech Disabilities Learn About New Technology Device or Service - Graph

[Numbers indicate actual number of respondents who checked off how they got information. More than one item was likely checked off by a survey respondent although they were asked to "check fewer rather than more." (n=92)]

When asked for other sources of learning about new devices or services, respondents stated the following: 
"United Cerebral Palsy Associations." [3 respondents]

"Junk mail."

"In the news."

"I'm well connected in the AAC community."

Recommendations related to marketing:

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.

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).


CONCLUSION: Implications for Future Research and Action

This work is a preliminary investigation of issues related to telephony by AAC device users with physical disabilities. It clearly documents the issues and establishes the need for further exploration of the problems posed in electronic communication for this group of people and their families.

Areas for greater research and analysis include:

  • Safety issues with regard to police, emergency alert, and operator connection should be addressed by the Federal Communications Commission and developers of emergency alert products.
  • More attention should be paid to how 411, 911, and other N11 services respond to people who use communication prostheses.
  • Ways to make telephones more easily and readily linked to existing voice prostheses, whether or not they are digital or software based.
  • Teachers, speech therapists, administrators of group homes and similar residential facilities, and other professionals working with people with severe speech disabilities must think about new ways of incorporating technology for communication purposes for this population.
  • Legislation should be required that addresses universal design as a standard for incorporation in all commercial products that include software and electronic interfaces so that access can be made via communication prostheses.
  • Methods or approaches that would permit greater linkage, wireline and wireless, between AAC devices and other commonly-used information appliances or household appliances.
  • Computer design that considers how units will be utilized by people with severe speech and motor disabilities, so that adaptive software and hardware can be cheaply and easily incorporated to provide some of the functioning required by AAC device users to access other modalities.
  • Development of universal design solutions in work, school, and home-based communication devices and appliances.
  • There should be a greater focus on and projection of real life futures for users of communications prostheses so as to not preclude educational and personal development as well as learning and integration into the mainstream of society.

  • Appendix 1

    A. Original Request or Invitational Letter

    B. Preliminary Questionnaire or Initial Profile Form as Disseminated

    C. Groups and Individuals Targeted for Preliminary Mailing


    A. Original Request or Invitational Letter

    February 21, 1996

    Dear HOV member:

    United Cerebral Palsy Associations is working with Gallaudet University on a project to find out how people who have motor disability and use augmentative communication, use communication technology (phone, fax, and e-mail) and what their suggestions are to improve it.

    The purpose of the project is to tell the government and industry how to improve so that when new communications technology is being designed, your needs will be taken into account.

    Attached is a simple questionnaire which will let us know if you are interested in answering a bigger, more in-depth survey. We need to hear from you soon and have included a self-addressed, stamped envelope to send back to us.

    Please return the questionnaire to us within the next ten days, or by March 2nd.

    After we receive the attached questionnaire back from you, we'll contact you in the manner you choose to proceed. The more in-depth survey has already been created and might take ten or fifteen minutes to complete. We want to get it to you soon to get your ideas on how to change barriers to communication.

    If you have a questions about the project, please contact me or Helen Rader at 202.776.0406 or 800.872.5827. My E-mail address is JeniferJS@AOL.COM.

    Thanks in advance and we're looking forward to hearing from you soon and are hopeful that you will want to share your experiences with us in more depth.

    Sincerely,

    Jenifer Simpson
    Special Project Director
    Community Services Division


    B. Preliminary Questionnaire or Initial Profile Form as Disseminated

    1. Did you use the telephone before you got an AAC device?     YES  NO

    2. Now that you have AAC, can you use the phone by yourself?    YES  NO

    3. Do you work?    YES  NO

    4. Do you live in your own apartment or home?    YES  NO

    5. Do you use a fax machine?    YES  NO

    6. Do you have a computer?    YES  NO

    7. Do you use e-mail?    YES  NO

    9. Do you have a few ideas, complaints or stories you'd like to share about your experiences with the phone, fax and other forms of communications technology?

    10. Would you be willing to answer more questions?    YES  NO

    11. What would be the best way for you to answer more questions?

            We call you on the telephone at a time you choose.

            We e-mail you the questions and you e-mail them back to us.

            We send you a disk and you send it back to us.

            We fax you the questions and you get them back to us however you choose.

    12. Please provide the following information if you have decided to respond to more questions.

                Name/Address
                Phone/Fax
                E-mail address

    YOU CAN FAX THIS FORM BACK TO US AT either 202.785.3508 or 202.776.0414. THANKS!


    C. Groups and Individuals Targeted for Preliminary Mailing

    Hear Our Voices (HOV) board members

    HOV general membership

    UCPA affiliates, contact people

    Temple University AAC Training Program (Augmentative Communication Empowerment Supports--ACES)

    ACOLUG (Augmentative Communication On Line Users Group)

    Bruce Baker Supported Employment Project

    Prentke-Romich Company via national regional sales representatives contacts (via Barry Romich)

    VOICE NET (Stephen Gregory)

    Bob Segalman (Cal. Rehab )

    National Meeting Place Project (UCP BBS network)


    Appendix 2

    Reasons Given For Not Participating in the Survey

    Upon receiving the initial one page letter, "Invitation to Participate," a number of individuals wrote back explaining why they did not wish to continue to participate or contribute to the study. A sampling of their responses are included as they illustrate some of the approaches some individuals take in regard to ensuring people with little or no speech have access to AAC devices or "communication prostheses" and its connection to voice telephony and other means of electronic communication.

    Some of these responses follow:

    "Although residents at our training facility (for individuals with developmental disabilities) use augmentative communication systems, they do not utilize their systems to access fax machines, e-mail, phones, or other types of communication technology, at this time. Therefore, we regret that we are unable to adequately respond to the survey." --Name, C.C.C.-SLP, L-AR, speech pathologist supervisor at a state department of human services developmental disabilities center

    "I believe I received this letter by mistake. I work with children that use AAC devices. I do not use one myself." --Speech language pathologist

    "I ... work with students who are nonverbal and require technology to complete verbal and written communication/academic requirements. Although I've informally tracked some college students who were former students, none are using technology even at this level. Rather, our state promotes the use of adults (and sometimes peers) to complete a task (be it communication, education or environmental control) rather than train them in the use of technology to gain independence."  --Speech pathologist who works with students who are nonverbal

    "I did not complete the survey as S. is unable to speak or communicate. He does not use any of this equipment."  --Parent who did not complete the survey

    "I have CP [cerebral palsy] but do not have significant motor disability or use augmentative communication. I also do not have any patients who do so I don't think I can help." --M.D.


    Appendix 3

    Final Survey Instrument As Disseminated    [not included]


    Appendix 4

    Contributors to the study

    Our survey asked respondents if they wanted to be listed as contributors to the study. The following people indicated they wished to be listed. Other respondents did not request to be listed or wished to remain anonymous. The list is in alphabetical order.

    Anthony R. Arnold, Grand Forks, ND
    Jamie Lyn Beers, Hunker, PA
    Debra Boeckman, Camdenton, MO
    James Carey, Springfield, IL
    David Chapple, Garfield Heights, OH
    Joshua Chartienitz, Washington, DC
    Martin J. Concannon, Elwyn, PA
    Tim Dooley, West Hurley, NY
    Gus Estrella, Prentke-Romich Fellow, c/o UCPA, Washington, DC
    Troy Ewing, Baton Rouge, LA
    Ed Fredericks, Speech Department, UCP, Albany, NY
    Paul Garrick, Olyphant, PA
    Kathy Garza, Bremen, OH
    Cheryl D. Guidry, Abb, LA
    Harriet Hale, Seattle, WA
    Peg Johnson, Richfield, MN
    Dan LaLone, Springfield, MO
    Deborah Leuchovius, St. Paul, MN
    Thomas F. Linde, Knoxville, IA
    William Y. Mackay, Alexandria, VA
    Robert McLemore, Houston, TX
    M.A. Merchen, Danville, IL
    Wayne C. Mnich, Kansas Commission on the Deaf and Hard of Hearing, Topeka, KS
    Jane Montalto, Richmond Hill, NY
    Lee Roy Mullins, Jr., Brooklyn, MI
    James E. Mszanski, Westfield, MA
    Julie Nesbit, Baton Rouge, LA
    Gail O'Donnell, c/o The Greenery, Middleboro, MA
    Freddy Poole, St. Paul, MN
    Laura Purcell, Plattsburgh, NY
    Tom Reed, St. Cloud, MN
    Ronald R. Rambo, Jr., Lancaster, PA
    Bob Segalman, Sacramento, CA
    Marcus Simpson, Evanston, IL
    Emilie Smith, Margaret E. Moul Home, York, PA
    Alba Somoza, New York City, NY
    Mary Somoza, Parent-Advocate, New York, NY
    Marilyn Strong, Lansdale, PA
    Elaine Tillman, Ash Grove, MO
    Michael White, Ontario, CA
    Howard B. Widnick, Beaumont, CA
    Bob Williams, Silver Spring, MD
    Tony Zacha, Monteagle, TN


    Appendix 5

    Advisors to Development of Instruments

    Patti Green Roth
    Researcher
    United Cerebral Palsy Associations
    1660 L Street, N.W., Suite 700
    Washington, DC 20036

    Gordon Richmond
    Executive Director, Hear Our Voices
    55 Hanover Circle, Apt. 301
    Birmingham, AL 35205-1718

    Ms. Becky Scholl
    Secretary, HOV
    Route 1, Box 15-B
    Irondale, OH 43932

    Mr. Michael B. Williams
    President, HOV
    P.O. Box 10098
    Berkeley, CA 94710

    Ms. Ruth Seinkienwicz
    Vice President
    96 Bridge Street, Apartment 3
    North Hampton, MA 01060

    Ms. Tina G. Blevins
    210 Bluegrass Avenue, #102 D
    Newport, KY 41071

    Mr. Rick Creech
    3312 Ridgeway Road
    Harrisburg, PA 17109-1023

    Ms. Harriett Hale
    13517 First Avenue Northeast
    North Seattle, WA 98125

    Mr. Jim Hynal
    1607 Ridgeway Road
    Havertown, PA 19083

    Ms. Peg Johnson
    6432 5th Avenue
    S. Richfield, MN 55423

    Mr. Mick Joyce
    4 North Allen Street
    Madison, WI 53705

    Ms. Samantha Reid
    2024 Monte Largo NE
    Albuquerque, NM 87112

    Susan Friedman
    ASHA
    1801 Rockville Pike
    Rockville, MD 20852

    Gus Estrella
    Prentke Romich Policy Fellow
    UCPA
    1660 L Street NW, Suite 700
    Washington, DC 20036

    Robert Williams
    Commissioner
    Administration on Developmental Disabilities
    HHH Building, Room 351 D
    200 Independence Ave SW
    Washington, DC 20201

    Kathy Roy Johnson
    Congressional Liaison
    Legislative Analyst
    U.S. Architectural, Transportation & Barriers Compliance Board
    111 18th Street NW
    Washington, DC 20036

    Robert Z. Segalman, Ph.D.
    California Department of Rehab
    830 K Street Mall
    Sacramento, CA 95814

    June Kailes
    Disability Consultant
    Board Member
    U.S. Architectural, Transportation & Barriers Compliance Board
    6201 Ocean Front Walk
    Plaza Del Rey, CA 90293


    Appendix 6

    Equipment Used by People with Disabilities

    1. Alternative and Augmentative Communication Devices Used by Survey Respondents (as they reported the equipment)

    • Alphatalker
    • manual word board
    • Dynavox
    • Introtalker
    • Prentke Romich Liberator
    • Liberator 2.0 with word strategy
    • Phonic Ear VRS128
    • PR LightTalker
    • Dynavox
    • Computer with a communication board
    • Librex 386 sx (handikey program) with a jelly bean head switch
    • Epson Scan Pac
    • LightTalker LT-MS
    • Liberator LIB I
    • Kroun, Vetratec
    • Kurzweil Voice
    • Muritz V611
    • TDD telephone, Ultratec phone
    • Prentke-Romich Liberator
    • Phonic Ear Voice 160
    • Zygo-McGaw
    • Wolf Talker

    2. Computers and Associated Equipment Used by Survey Respondents

    • Activa
    • Packard Bell
    • Packard Bell Legend 30CD;
    • MAC
    • MAC Performa 630 CD, 250 MG, 33 MHZ
    • Pentium Packard-Hewlett
    • PS2, IBM, 8M
    • 486, 66 mz, 8 MB, Genius
    • IBM computer
    • HP, 100 mh
    • IBM 386
    • IBM PC, Gateway 2000, 486 dx, pentium
    • IBM
    • Mac
    • PC Micro, 486, 33 mh
    • Magitronic
    • IBM clone, 4 mg RAM, 486, 33, 310 hd
    • MAC 611S, 16 rp RAM
    • Apple
    • IBM Compatible 486 sx, 86 MB
    • McIntosh II
    • Canon Innova, 486

    Appendix 7

    Funding Source for AAC Equipment for Respondents with Severe Disabilities Under Age 21 in the User Needs Survey

    Thirty-two parents of individuals under the age of 21 responded to a request to participate in a survey on how people with severe speech and physical disabilities utilize electronic communication devices (i.e., voice-based telephony, fax and e-mail communication). The survey request was distributed broadly via several networks, including Hear Our Voices, a national consumer group of people who use augmentative and alternative communication (AAC) devices, to UCPA affiliates with speech programs, and to other individuals in the speech-disabled community who indicated they could pass the survey along to users of AAC devices.

    These children, whose parents responded on their behalf, are individuals with severe disabilities requiring multiple supports, including personal assistance and many items of technology. This snapshot counts the primary funding source of the current AAC device.

    Findings

    As the analysis on funding sources for AAC devices for children was conducted prior to receipt of all survey responses, only 30 records were evaluated.

    Only three of the 30 children had their AAC devices paid for by an education authority as reported by the parent (a rate of only 10%). The largest source of funding for AAC devices was Medicaid, which provided 40% of respondents the primary funding for their AAC devices (11 of the 30). Twenty-three percent of families spent out-of-pocket funds for these devices, with private health insurance covering 17% of AAC users' devices. Ten percent had a device paid through another source (e.g., state Mental Retardation/Developmental Disabilities agency).

    "Even though my daughter J. got authorization of $13,000 from [the state] Medicaid to pay for an augmentative communication system last April (1995) she still does not have the system because we need even yet more money to pay for training. The vendor is holding it hostage and won't deliver it until we get $7,000 more." --Comment by a parent of a child with cerebral palsy.


    Appendix 8

    Principal Investigator and Project Assistant

    Jenifer Simpson is a senior policy associate in the Governmental Activities Department of the Community Services Division of UCPA's national office in Washington, D.C. Her responsibilities include monitoring and influencing legislation and regulations in the areas of technology and income supports as they affect people with disabilities and their families. This includes policy development for Assistive Technology and Telecommunications in addition to monitoring programs of the Social Security Administration such as Supplemental Security Income (SSI). She chairs the Consortium for Citizens with Disabilities (CCD) Task Force on Communications Access and Telecommunications and Technology, and is a member of CCD's Social Security Task Force.

    Additionally, Ms. Simpson is a board member of several national and local groups, including the Telecommunications Advisory Access Committee of the U.S. Architectural Barriers and Compliance Board; the Disability Advisory Group for the Democratic National Committee; the Republican Disability Coalition; and Americans with Disabilities Vote, a national group working to ensure people with disabilities and their families register to vote and vote in every local, state, and federal election. On the state and local levels, she is a member of the Mayor's Developmental Disabilities Planning Council for the District of Columbia, the Parent Advisory Group for the Hospital for Sick Children in Washington, D.C., and the Personal Assistance Services Advisory Group for the Endependence Center in Arlington, Virginia. She is currently a board member for Making Connections, a dating and social club for young people with mental retardation.

    Ms. Simpson advocates on behalf of children and adults with cerebral palsy and similar severe disabilities and for parents and families of children with disabilities. She is the managing editor and a writer for UCPA's national publications, Word From Washington, Washington Watch, and the Family Support Bulletin. She has also contributed to Mainstream Magazine, Berkeley, CA, and Exceptional Parent Magazine, Brookline, MA.

    Helen Rader is a disability consultant. She is the executive producer and writer of the award- winning educational documentary on the impact of epilepsy on the family, Just Like You and Me produced in 1990 by State of the Art, Inc. She is the author of Children With Epilepsy--A Parents' Guide (1988, Woodbine House, Maryland). Her work has been published in both national and international magazines and journals. She has served as the Information and Referral specialist at the United Cerebral Palsy Associations, Inc. national office in Washington, D.C.; program specialist at People for the American Way; confidential assistant to the Director of VISTA; coordinator of the Pennsylvania Coalition on Food and Nutrition; citizens advocate in the governor's office in Pennsylvania; and integration specialist at the Harrisburg City Schools in Pennsylvania. 

    Ms. Simpson and Ms. Rader share thousands of professional and parent hours of disability experience and have advocated on many issues with public and private sector entities.


    Appendix 9

    What is UCPA?

    United Cerebral Palsy Associations (UCPA) is a national not-for-profit charitable membership organization, founded in 1949, that currently delivers more than $500 million in services annually via its network of 153 affiliates in 44 states. UCPA serves to represent the interests of more than 500,000 children and adults with cerebral palsy and their families in the United States today in addition to those with other similar severe disabilities. Significantly, two-thirds of individuals with cerebral palsy experience speech disabilities, typically with little or no clear speech..

    In addition, prevailing consensus is that about 5,000 babies and infants are diagnosed with the condition each year and some 1,200 to 1,500 pre-school age children acquire cerebral palsy annually. Cerebral palsy is a term used to describe a group of chronic conditions affecting body movement and muscle coordination (not a disease or illness) that directly affects motor, including speech, abilities

    UCPA members are very familiar with the difficulties encountered by people with speech disabilities as they attempt to utilize existing voice-based telephony. A critical policy agenda is addressing the assistive technology needs of those with speech and motor disabilities, which includes meeting the technology challenges faced by a rapidly changing electronic communications infrastructure.

    UCPA is instrumental in furthering a policy agenda that shifts the high cost of adapted and adaptive technology devices from people with disabilities into and across the marketplace. This concept was a fundamental assumption by the UCPA leadership in developing disability access provisions in the new Telecommunications Act (P.L. 104-104, The Telecommunications Act of 1996). Disability consumer advocates are very familiar with the out-of-pocket costs, both to individuals with disabilities and their families and households, and with the scope of what amounts to a publicly-funded subsidy of telecommunications by numerous public programs for people with disabilities

    Appendix 10

    Miscellaneous Quotes from Survey Respondents

    "We want to be aware of the technology so L. can be taught to be proficient when he is an adult." -- Parent of 13-year-old with cerebral palsy

    "The augmentative equipment means J. now communicates with his teachers and supervisors in work labs. It has made a dramatic improvement in his self confidence and future opportunities." -- Parent of a 15-year-old in high school special education.

    "Depends on amount of 'noise' on GTE North's telephone lines. My equipment can't handle the static that is prevalent on the old equipment used by this telephone exchange." -- Adult with cerebral palsy.

    "If B.'s Liberator is not working, he has no way to communicate to Prentke Romich's technical support system what needs he has. I call them, he tells me and (I) relay it to the technician. They tell me what to do, I tell B. and he does it." -- Parent of a 19-year-old with cerebral palsy in twelfth grade.

    "[She] is not mentally retarded, but does have some developmental delay problems. . .[she] is involved enough to make even using her "Liberator" a chore. She can only effectively use a computer as far as the "enter" and "space" bars are concerned. Much or all actually of [her] school and home educational programs center around these two keys. If a yes or no question, it takes her a while to get to the Y or N key. . .I don't think your questionnaire would be of benefit for us at this point." -- Parent of 14-year-old who uses a wheelchair.

    "K. [was] shuttled from one type of communication to another, year after year, and ended up with very little sophistication."--Parent of a 26-year-old who works as a clerical aide six hours a week and lives with both parents. K. is dually profoundly deaf, has cerebral palsy, mental retardation, wears hearing aids, and uses "total communication," i.e., black and white line drawings, photographs, natural gestures, physical cues, some signs receptively, and does not have an electronic communication device.

     

     

     

     

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