who have a need so that the device could facilitate their independence in toileting.

The major point that I would like to make is that not all these devices are currently available. But if designed flexibly enough, they can serve functional needs that cut across traditional labels of disability, and therefore will be more viable in the marketplace.

One other thing dealing with the research that feeds into the service delivery systems. Right now, the research times lines and dollar resources that are committed to research and development methods are based on an older model in which research was done on curriculum materials. This doesn't fit very well in terms of making advances that can serve a variety of handicapping conditions.

Typically, lots of the Federal projects are funded on 18 months for research and development. It turns out that there's not a lot of time to do research on an interdisciplinary fashion-which is a whole new type of research-before you do development. Rather than answering questions through research as to whether the approach should be electrical impedance or ultrasound, to have the best device that's the most durable and effective, you end up often taking a best guess, since you need to get into the development efforts.

Of course, the errors you commit can get multiplied as you go down. If you could include in your thinking a reconsideration of how research and development efforts could feed into the availability of products for people who are cognitively impaired, or who have other handicapping conditions, I feel that the advances will be more pervasive.

Thank you.

[The prepared statement of Dr. Al Cavalier follows:]

STATEMENT OF AL CAVALIER, PH.D., DIRECTOR, THE BIOENGINEERING PROGRAM, DePARTMENT OF Research and PROGRAM SERVICES, ASSOCIATION FOR Retarded CITIZENS OF THE UNITED STATES

Children and adults with mental retardation or other cognitive impairments can be more independent in activities of daily living, can learn more in school, can be more employable and more productive when employed, and can obtain more satisfaction and enjoyment in their leisure when provided appropriate assistive devices and strategies for their optimal use. Children and adults with mental retardation or other cognitive impairments are not deriving these benefits from the nation's advanced technology. Products responsive to many of their important needs are not available. For those needs for which products are available, they are not accessible. The sophisticated use of tools distinguishes us from all other beings in the world. In this context, tools can be looked upon as extensions of ourselves to augment our abilities and compensate for our limitations. Today's technology represents the most advanced and powerful set of tools yet devised. We can transmit our voices instantly across the ocean by pushing a few buttons, regulate the surrounding temperature by turning a dial, and cook a whole meal in a matter of minutes by setting a few controls. All such augmentations and compensations are adaptations to serve our needs, and while most of us take for granted these prostheses, the net result is a dramatic increase in our productivity, efficiency, and leisure. The applications of technology, however, have thus far discriminated against a large number of American citizens. Our technological advances have not been designed with sufficient creativity and flexibility to incorporate the needs of many people who are mentally retarded. Society has yet to produce assistive devices or incorporate assistive features for people who are mentally retarded. It is the belief of the Association for Retarded Citizens of the United States that these advances will not occur without strong leadership from our federal government.

To date, the private sector has been primarily responsible for the few innovations in devices, techniques, and services that are currently available. The Bioengineering Program of the Association for Retarded Citizens was initiated in 1982 to explore the contributions of advanced technology to serving the needs of people who are mentally retarded. The Program has three major purposes: a) to modify existing devices and to develop new devices that are responsive to the needs of people who have cognitive impairments, b) to research training procedures and techniques that improve the use of assistive devices; and c) to improve the delivery of services that include technology assistance.

In conducting its activities, the Bioengineering Program makes use of a nationwide network of over 1,300 state and local ARC chapters, the majority of which are service providing agencies in their local communities. Based on this chapter structure and over 160,000 members, the ARC is the largest voluntary organization in the country devoted exclusively to the welfare of children and adults with developmental disabilities and their families.

EXAMPLES OF IMPROVING THE AVAILABILITY OF ASSISTIVE DEVICES FOR PEOPLE WITH COGNITIVE IMPAIRMENTS

Independence in toileting

In attempts to normalize the lives of children and adults with mental retardation, much energy has been devoted to teaching these individuals to function independently in society. The problem of incontinence often thwarts the best of these efforts. Successful toilet training depends on the learner recognizing the senation of a full bladder and then associating that feeling with the toileting routine. For many people with severe and profound mental retardation, this connection between internal state and external behavior is difficult to establish. While toilet training programs are quite effective in teaching some people that routine, these programs typically presuppose that all people are already cognitively aware of those sensations. However, children and adults who are severely cognitively impaired have difficulty detecting these subtle and obscure signals.

Incontinence typically results in a negative stigma for the person, reduced positive interaction with other people, unsanitary living conditions, excessive laundry expenses, and increased custodial attention by caregivers. Because of incontinence, individuals are often actually denied participation in a variety of educational, vocational, and social programs-all of which are critical experiences necessary for their developmental growth and integration into community life.

As a consequence, the ARC Bioengineering Program has been developing an assistive device that allows individuals and caregivers to recognize when the bladder is sufficiently full. The bladder sensor uses ultrasound to monitor the volume of urine in a person's bladder throughout the course of a day and then provides a subtle signal when a specified level of fullness is reached. To accommodate individual needs, the signal can be an auditory, visual, or tactile cue. With the device, individuals can be taught to take responsibility for recognizing the need to urinate, first by relying on the device and then by relying on the internal feeling that comes to be associated with the signal from the device. At the same time that people are being trained to use the device, they should also be learning toileting skills so that they will know the proper routine once they recognize the need to urinate.

The device consists of a small sensor positioned on the lower abdomen that is connected to a "walkman"-sized unit in which all the processing logic is located. When the logic unit determines that the bladder has reached the level of fullness specified for an individual's needs, a signal is given to the individual wearing the sensor and, if desired, transmitted remotely to a parent, teacher, or nurse.

The development of this device is funded in part by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education and involves a collaboration with the ARC, the University of Tennessee Medical School, NASA's Technology Utilization Program, and local ARC chapters.

While the device was designed from the outset for the needs of people with mental retardation, sufficient flexibility in adjusting different paramerters was also intentionally designed into the device to permit it to be responsive to the largest consumer base possible. As such, the device can also provide increased independence for people who have permanently lost the ability to control their bladders for medical reasons, such as spina bifida, quadriplegia, diabetes, cerebral palsy, and advanced age. An initial market analysis estimates that there are over five million American citizens that could benefit from such an aid. We believe that not only can assistive devices be designed to accommodate the needs of people who are cognitive

ly impaired, but they also can be designed flexibily to address a much larger population and thereby survive in the marketplace.

Improvements in cognition

While most instructional software packages are based on general educational principles, few are precise translation of well-proven educational procedures. Exact translations are difficult to achieve because they require complex programming: detailed instructions and examples, varying levels of difficulty, motivating rewards, corrective feedback, and sophisticated analysis to individualize instruction to each student. It is important to note that what is being referred to is the transfer of an entire instructional procedure, not just a learning task.

Cognitive process deficiencies represent a critical problem for people with mental retardation and learning disabilities. Many reserchers have studied how people process information and have identified ways to remediate processing problems. Unfortunately, the procedures are complex and very laborious and, consequently, are not used by teachers in our nation's schools. We believe these conditions justified attempting to automate the remedial procedures on the personal computers typically found in the schools. This was an important focus, since if it were successful it would achieve gains in the fundamental cognitive skills that underlie all other higher order areas such as reading and mathematics, thereby producing benefits in all of those areas.

With this in mind, the ARC Bioengineering Program, with support from the Office of Special Education Programs of the U.S. Department of Education, designed, developed, and evaluated software to assess the cognitive needs of students with mental retardation or servere learning disabilities and then to remediate them. The software that was developed incorporates assessment and remedial components along with sophisticated ongoing analyses and opportunities to play an exciting video game. Individual cognitive strategies are trained separately at first. Then students are trained to chain them together. The computer always starts by demonstrating what it wants a student to do and then gradually fades the amount of assistance it provides until the student is performing independently. The software incorporates animated graphics as well as written and spoken instructions and comments. It also responds to inputs other than they keyboard (lightpens and joysticks). These accommdate individual needs and allow the students to interact with the system without taking their eyes from the screen.

Extensive field testing in public schools showed that not only did the software improve the cognitive skills of students who were mentally retarded or learning disabled, but it also refined the skills of students who were not disabled.

We believe today's technology provides the most powerful tools to directly address the congitive needs of children and adults with mental retardation or other cognitive impariments.

Freedom of choice and expression

Persons with profound mental retardation and severe physical impairments often are bed or wheelchair-bound with very limited control over even gross motor movements and often are capable of making only unintelligible sounds-truly a difficult challenge for caregivers and teachers. They are usually totally dependent on others to discern their basic needs such as thirst, hunger, or toileting, and to make choices for them that agree with their desires such as turning on the TV or rolling over. If their needs are not discerned by others, their needs are not met. Often these individuals are denied by their disabilities-and society's response (or lack of response) to them-the social interactions, opportunities for productivity, and personal fufillment to which everyone is entitled. It is too easy for other people to come to believe they have no preferences and no desires. Parents and other caregivers are also severely impacted by the multiple handicaps in that they are needed to provide extensive care and attention.

People with severe multiple handicaps often appear passive to caregivers, who react by offering few opportunities for active involvement in decision making. Such circumstances typically result in extreme frustration, increased passivity, and helplessness in people with these handicaps. This ironically reinforces the dependency and creates a cycle of diminished expectations. What is needed is a new arrangement of the environment that allows "dependent" people to exercise independent control over various aspects of it. Increased self-esteem and independence for the disabled individual is the result, along with altered perceptions on the part of caregivers.

The ARC Bioengineering Program believed assistive technology might hold the key to such a reversal. The assistive device developed to address this situation was an off-the-shelf computer system with voice recognition capabilities that was linked

through newly-developed software and a variety of interfaces to such items as TVs, radios, electric fans, vibration massage pads, and videocassette recorders. While environmental control systems have been used by persons with physical handicaps who are not cognitively impaired, it had never been determined whether someone with profound mental handicaps and severe physical impairments could learn to purposively use such technology or if the benefits of such use would be substantial. The basic intent was to configure a computer-based assistive device to intervene for the subject at his/her choosing to provide some freedom of choice and control over significant aspects of his/her environment.

The subject selected for this investigation was 42 years old, possessed no self-help skills, was completely dependent on others for the fulfillment of all her needs, had almost totally unintelligible vocalizations, and was confined to a bed or gurney chair all of her waking hours-a person representative of most of those who are waiting to be released from institutions. The basic questions were: Could she understand the concept of "control" after never having experienced it in her life and would she use it constructively?

The system was activiated entirely by voice. The woman who was disabled needed only to make consistent sounds-they did not have to be real words-in order to turn the appliances on and off at her choosing. Results showed that the woman not only learned the cause and effect relationship between making a sound and activating a device, but she also learned to discriminate among the devices and select only those she cared to operate and only at the times she cared to operate them. She also became much more animated and expressive.

The woman expressed obvious pleasure while using her system and appeared to take pride in demonstrating it to others. Videotapes captured her laughing and exclaiming with delight when she realized her impact on her surroundings by operating the device. She also expressed displeasure when the system was temporarily diabled. She had distinct preferences among the applicances and seemed at times to turn them on and off the sheer pleasure of being in control.

The woman's caregivers were surprised to observe her newly revealed skills, and began to behave differently themselves. They interacted with her more frequently and encouraged her participation in decisions about her daily routine.

This research shows what is possible with commonly-available computers and peripherals. It demonstrates that people with profound mental retardation, who typically receive the most minimal of services and are the last to be considered for more normalized living routines, can begin to exercise the basic fundamental rights of freedom of choice and expression through advanced technology and skilled training procedures. Hidden capabilities can be unmasked and new skills developed. As the technology continues to be refined and extended, it can also offer to parents teachers, and therapists optimism that more normalized and rewarding lifestyles are indeed possible for people with severe cognitive impairment.

EXAMPLES OF IMPROVING THE ACCESSIBILITY OF ASSISTIVE DEVICES FOR PEOPLE WITH COGNITIVE IMPAIRMENTS

Integrating technology assistance into service delivery

In conjunction with the ARC, the University of Texas at Arlington has been conducting a three-year effort to design, implement, and evaluate a model strategly for integrating technology assistance into an exisitng developmental disabilities service delivery system in a large urban community. As part of this effort, the ARC operates a telecommunications network comprised of an electronic mail and bulletin board system to provide information sharing among service providers and consumers and a computerized database of resources on the application of technology for people who are disabled.

Results of these efforts show that a critical factor in an effective community service delivery system that includes technology assistance is the delivery of the services by adequately prepared professionals and paraprofessionals. Easy access to a pool of information is not enough; service providers must be trained to assess a person who is cognitively impaired for the appropriateness of technology assistance, to prescribe the appropriate assistive device, to teach the proper use of the device, and to evaluate its continued appropriateness. A second critical factor is the provision of followup support after a consumer has purchased and been using the assistive device for some time. Too often, a consumer is totally on his or her own. A third critical factor is the provision of sustained interaction between consumer and device prior to purchase, e.g., centralized sites where an extensive collection of assistive devices can be "tried on" under skilled supervision and provided on a loan basis for a period of time sufficient to determine the appropriateness of the consumer/device match-up.

Strategies more than devices

For two years, the ARC assisted the American Speech-Language-Hearing Association (ASHA) in improving the use of augmentative communication aids in the nation's schools by children having little or no intelligible speech. Communication aids range widely in complexity, design, and cost. This study identified 11 exemplary communication programs in the nation. These programs were analyzed to determine why they are successful and how they have dealt with obstacles to providing appropriate communication services. For people with cognitive impairments, once again, a critical factor was shown to be the assessment of their abilities and of the appropriateness of technology assistance by skilled clinicians.

It is important to note that, as in the case of many of the rehabilitation engineers who helped to pioneer the field of rehabilitation technology, many of the early leaders in augmentative communication-who still exert strong influence over the field-have had limited experience with children and adults who are cognitively impaired, are unfamiliar with the skills that they have been shown to achieve, and hold dismal beliefs about their ability to benefit from communication aids. As a result, most communication aids were not designed with interfaces that permit access by these individuals. More creative reseachers and clinicians have shown that not only do such aids significantly enhance the ability of children who are cognitively-impaired to speak, but they also represent powerful new tools to teach them language and its functions, thereby permitting them to participate fully in the educational process and beyond.

RECOMMENDATIONS

(a) Technology assistance can significantly improve the independence, education, productivity, leisure, and integration of citizens who are cognitively impaired. Such assistance must be integrated throughout all of those areas of a person's functioning and throughout his or her lifespan.

(b) Rather than coordinate a variety of technology services that already exist in fragmented fashion around the country, the federal government must assist in the creation of those services. They do not exist.

(c) There is no comparison between today's technology assistance and anything we have witnessed in the past. We should not be constrained to adopt existing service delivery models for this new enterprise. We should not rely on old solutions to such novel problems. New systemic design is needed.

(d) Very few assistive devices that are responsive to the important needs of people who are cognitively impaired are currently available in the market place. Research and development of new assistive devices that focus on such needs and that are more flexibly designed should be supported.

(e) of those assistive devices that are available for people who are cognitively impaired, most of them are not accessible due to designs that did not take into account cognitive needs, training strategies that have not been developed to teach their use, and practitioners who are ill prepared to assess and train. Personnel preparation, both preservice and in-service, must be a major component of a nationwide service delivery system.

(f) Research and development efforts in this new area typically are more expensive and require more time than other research projects. To realize the powerful benefits of technology assistance, we must commit larger budgets and longer timelines for federal projects in this area.

(g) There is a prevailing belief among many of the leaders in the field of assistive technology that people with mental retardation or other cognitive impairnments are not appropriate consumers of assistive technology. They have had limited or not experience in applying technology assistance to such individuals. They are prisoners of the past whose self-limiting beliefs create self-fulfilling prophecies. People with mental retardation or other cognitive impairments should be named as "traditionally underrepresented groups" with regard to technology assistance; otherwise it will become a further means of discrimination against these groups.

(h) Accurate information on the nature and extent of the existing and future market for assistive devices and services has a critical role in the definition of research and development agendas and ultimately the responsiveness of the service delivery system. Demographic studies should be supported, with assurances that people who are cognitively-impaired are not excluded.

(i) Research on training strategies and procedures to teach optimal use of assistive devices is extremely important for people with cognitive impairment, and should be supported by the federal government.