ASSISTIVE TECHNOLOGY FOR PERSONS WITH

DISABILITIES

FRIDAY, MAY 20, 1988

U.S. SENATE,

SUBCOMMITTEE ON THE HANDICAPPED,

COMMITTEE ON LABOR AND HUMAN RESOURCES,

Washington, DC.

The subcommittee met, pursuant to notice, at 9:35 a.m., in room SD-430, Dirksen Senate Office Building, Senator Tom Harkin (chairman of the subcommittee) presiding.

Present: Senators Harkin, Simon, and Weicker.

Senator HARKIN. The subcommittee will come to order.

I have been told that at 11:30, we have five roll-call votes, so we have to finish by 11:30. In the interest of time, I will just ask that my opening statement be made a part of the record.

[The opening statement of Senator Tom Harkin follows:]

OPENING STATEMENT OF SENATOR HARKIN

Senator HARKIN. Yesterday, people with disabilities spoke from their hearts and to our hearts. They told us inspiring storiesabout how they had the character and the technology that, together, helped them overcome the effects of their disabilities. We cannot help but remember Teddy Pendergrass' statement to his physicians, that, when he was discharged from the hospital, he planned to keep on making music.

Also yesterday we learned that there are many unmet needs calling for a prompt Federal response. Brian McNulty captured the essence of the testimony when he said that people whose participation had been constrained by their own physical limitations now have significantly increased access to the world around them. He added, "with the advances in technology, the limitations now reside not within the individual but with the fiscal and human resources within our service delivery systems."

Today, we will continue to hear from people with disabilities. Denny Theesfield, of Armstrong, IA, was disabled in Vietnam. But he and his friends used technology to put him back to work and literally to save his family farm. Denny will speak to our hearts, but he also will instruct our minds.

So too will other witnesses. They will tell about the major functions of life-learning and work-that can be opened more fully to people with disabilities when assistive technology is available. They will repeat the message that we heard so clearly yesterday-that there is a great need to ensure that users and professionals alike

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receive on-going training to use assistive technology. And they also will tell us about the programmatic and fiscal barriers facing Federal and State governments and the private sector.

I would ask, Senator Simon, if you have any opening comments.

OPENING STATEMENT OF SENATOR PAUL SIMON

Senator SIMON. Just briefly. I regret that I couldn't be here yesterday. I chaired a hearing on the South African situation, and I'm going to have to leave here early.

I simply wanted to commend you, Mr. Chairman, and everyone here who is involved in this kind of activity. I am particularly pleased that you have the Executive Director of the Lekotek Center from Illinois here as one of your witnesses. As you will hear, it is the kind of program that we have to be moving on.

I stopped by the technology exhibition in the Hart Office Building yesterday to see what's being done with technology for children with handicaps so that they can function better. I got in a wheelchair that had a device so that you can stand up, even though you're in a wheelchair. But it will cost, apparently, about $8,000 or $9,000 for that wheelchair. How do we make sure that technology is available?

I would also like to commend companies like IBM who are moving in this field. I don't know whether they're going to make any money out of this or not, frankly. I hope they do. But whether they make any money or not, they're helping this country in a very significant way.

There's just no question-we can do much better in this area of technology-and I say that as one who is wearing two hearing aids. I can assure you, we have to improve that technology. We're a still a long way from where we ought to be in terms of what hearing aids ought to be in our society.

Again, Mr. Chairman, I commend you for this hearing, and I commend all those who are here who have been leading to improve the quality of life for all Americans.

Thank you, Mr. Chairman.

Senator HARKIN. Senator Simon, thank you very much for those very poignant and, I think, on-the-mark statements.

I also want to put Senator Weicker's statement in the record at this point.

[The opening statement of Senator Weicker follows:]

OPENING STATEMENT OF SENATOR LOWELL P. WEICKER, JR. Senator WEICKER. Mr. Chairman, I want to commend you for convening two days of hearings to examine ways to promote the use of assistive technology for persons with disabilities.

Most of us take for granted the technological advances that enrich our daily lives-from televisions to computers. For individuals with disabilities, the promise of technology can literally mean the difference between a life of dependence and isolation and a productive life in the mainstream of society. Assistive technology has proven its value in assisting disabled individuals to become independent and contributing members of our workforce. Through rehabilitation engineering, worksites can be modified to permit dis

abled individuals to obtain jobs that previously would not have been available. Through applied technology in the classroom, disabied children can be integrated into the educational system with their nonhandicapped peers.

In the course of these hearings, we will examine what impediments exist to the widespread use of assistive technology, such as the lack of coordinated, state-wide service delivery systems, and the need for funding and additional research and development. We will also receive recommendations as to what the Federal Government can do to reduce those barriers.

Technology can open the door of opportunity for persons with disabilities. Sophisticated assistive devices such as electronic communication devices enable individuals who cannot speak to express themselves, and environmental control devices permit persons with limited functional abilities to operate telephones and to direct the use of a pencil or utensil. These are just a few examples of the exciting developments resulting from assistive device technology. As a result of these advances, disabled individuals are becoming increasingly integrated into our educational system and the workforce.

Legislation being drafted by the subcommittee chairman, which I support, calls for a comprehensive approach that would allow States to develop the capacity to provide technology and related assistance, create a national information and referral network, and promote applied research, development and training. Such a coordinated approach will ensure that existing technology and future advances will be available to all people with disabilities-not just a privileged and determined few.

I also want to commend Senator Kerry for his leadership in introducing legislation to create "assistive device resource centers" for disabled children, and I look forward to working with him, Senator Harkin and members of the Subcommittee on the Handicapped as we proceed with comprehensive assistive technology legislation.

Senator HARKIN. Our first panel will address how assistive technology can enhance functioning in different areas.

Our first witness, is Sally DeVincentis, Director of the National Lekotek Center, who will discuss the role of assistive technology in early education and the role of parents. Dr. Herb Rieth, Chair of the Special Education Department at Peabody College of Vanderbilt University will discuss the role of assistive technology in enhancing learning in special education.

I am particularly proud to introduce Denny Theesfield who is a farmer from Armstrong, Iowa. After Denny became disabled in Vietnam, he thought that he would have to stop farming. But with the aid of assistive technology, he has been able to continue in his proud family tradition of farming. He will present testimony on the role of assistive technology in enhancing employment opportunities.

Finally, we will hear from Tom O'Bryant, Director of Equal Opportunity Affairs, with the Champion International Corporation, and a member of the President's Committee on Employment of the Handicapped. Mr. O'Bryant will also address the role of assistive technology in enhancing employment opportunities.

Our first witness will be Sally DeVincentis, Executive Director of the National Lekotek Center in Evanston, Illinois. We welcome you to the subcommittee. For you and all the other witnesses who are here, your statements will be made a part of the record in their entirety.

Again, we are really on a strict 2-hour limit today so I would ask you to try to sum up your testimony in 5 minutes. Sally, welcome.

STATEMENTS OF SALLY DeVINCENTIS, EXECUTIVE DIRECTOR, NATIONAL LEKOTEK CENTER, EVANSTON, IL; HERBERT RIETH, CHAIR, SPECIAL EDUCATION DEPARTMENT, PEABODY COLLEGE, VANDERBILT UNIVERSITY, NASHVILLE, TN; DENNY THEESFIELD, ARMSTRONG, IA; AND TOM O'BRYANT, DIRECTOR, EQUAL OPPORTUNITY AFFAIRS, CHAMPION INTERNATIONAL CORP., STAMFORD, CT

MS. DEVINCENTIS. It's really a great privilege to be here.

I thought perhaps I should start by defining exactly what that word "Lekotek" means. It's a Swedish word, which makes it a little difficult in this country. Lekoteks were started in Sweden by parents of children who were severely physically and mentally impaired.

Essentially, what Lekoteks are, they are resource centers for families. The original purpose was to have families care for their children in the homes, so lending of products is very important.

The mission of Lekoteks is the integration of all people with special needs into the mainstream of society, a very Swedish concept which is also very important here.

I was one of a group of parents and professionals who first brought the Lekotek to this country. That was in 1980. Today there are 45 sites, and there are 19 in Illinois, and there is also one in Iowa.

Four years ago, the National Lekotek Center developed a computer project. We did that because so many of our children were unable to talk, walk or even hold a pencil. We felt that, really, the way out for these children was to develop products and technology that could help them function in the real world.

We call that division of Lekotek Innotek, which is short for Innovations and Technology. Mary Trichman, who is with me, is the Director of Innotek, so I would like to introduce her.

Today, there are many Lekoteks with an Innotek program which provides technology to families. I would like to address two needs that we have clearly found in delivering services to children that we hope that this particular legislation will address.

The first one is that children have very specific and special needs in technology which is not always similar to adults. The second, a major problem that we have found is that very often technology exists, but we're not able to get it out to people who need the most. So distribution is a major problem for technology.

I would like to talk a little bit about why technology for children is a little bit different than adults. Our particular interest is in adaptive computers, and I will really speak to that particular subject.

It's easy to see how computers are very important to adults, and very often vocational opportunities have pushed forward development of computer technology. So if you're an adult and you can use a computer, you can always get a job as a computer programmer or someone who can do word processing, and it is a terrific advantage, vocational advantage, for an adult.

But somehow these innovations for adults have very slowly trickled down to children. I think part of that is that children have very different needs, and they're not necessarily vocational needs. I would like to give you an example by telling you a story of something a mother recently told me.

This mother had a child who was severely affected with cerebral palsy, and the child was a very floppy child, could not hold up its head, could not talk, could not walk. So from the time the child was very young, the mother would pick up the child, put the child over her shoulder and prop its head on her shoulder and would go places.

So about the age of four they got an electric wheelchair for this child and they put the child in the wheelchair, and they made rather a remarkable discovery-that the child's whole idea of mobility was what he could see over his mother's shoulder, and he had no idea about what going forward meant, and he had no idea about planning where he was going to go. So you can imagine, this idea of adaptive technology for this child required a whole new cogitative development because his idea of mobility was so different than everybody else.

The point of this story is that children who have not had normal experiences in childhood often grow up with a very distorted view of the world. That's why at Innotek, we are really very excited about some of the opportunities that technology offers to our children. Truly, a lot of the hardware is there. What we see is missing is really some of the software that revolutionizes children's way of thinking.

Our children need experiences that simulate normal childhood experiences, and we think it can be done in adaptive computers. We're not talking about software that is on the market now that sort of color matches and electronic ditto sheets. We're talking about a real revolution in software; software that really simulates experiences of normal childhood development.

I think a lot of that thought process exists in universities, but it sure doesn't exist in the retail stores. You can sell and buy it. The question is, how long do our children have to wait for that? It could make all the difference in the world to their developing intelligence.

When we ask the question, "When is this going to happen?" the things that we think about first are: How do you pay for such development? We know that software development is enormously expensive. The second is, after you have it, how do you distribute it to the people who need it the most?

At Innotek, our greatest challenge has really been how do you pay for services. Our family simply just can't afford it. Many of our families are young families because they have young children and they have, really, overwhelming needs and overwhelming costs. Just the simple idea of thinking about a family who has to pur