This article is reprinted from the A.T. Quarterly, Volume 3, Number 1(1992).

As our eight-year old son Scott begins his third year of special education, we have feelings of pride and concern. We are very proud of the progress Scott is making. Our expectations are continuously raised as he proves his increasing desire and willingness to learn. Yet we are concerned that this desire and willingness may be someday suppressed by his physical disabilities.

During the past three years, we have slowly come to a realization that Scott may increasingly struggle with life. The lower expectations of childhood will be replaced by the need to function at a higher performance level after he leaves grade school then enters middle school, high school, vocational school or (dare we hope?) college and the workplace.

Hence, our attention is shifting to focus on the quality of his education and, ultimately, his life as an adult. Our primary concern involves his communication skills. Scott has little understandable speech and currently just writes his name. We believe that Scott, like any child, can learn best during his early years. Moreover, we wonder if he will have a second chance, if his disabilities may cause his interest in learning to decline.

SCOTT THE PATIENT

Although almost full-term, Scott weighed only two pounds, twelve ounces at birth. He was born with a complete mid-facial cleft: no skull bone, cranial stenosis, cleft lip and palate, hydrocephalus, wide set eyes, low set ears, club foot, short fingers/toes. Scott has endured 16 major surgeries, endless exams, blood tests, and therapies. He has been seen by more than 100 doctors, therapists and other health care professionals. His medical records are measured in feet. Despite all this, his diagnosis remains simply "Multiple Congenital Anomalies of Unknown Etiology."

SCOTT THE CHILD

In spite of, or perhaps due to all this, Scott has always had a wonderful personality that few people who take the time to know him forget. His quick wit and laugh are contagious. He loves a prank more than anyone. His determination is remarkable. His love of music, fans and, most importantly, people is beyond description. He is well accepted (and popular!) with his classmates and the kids without disabilities at his school. No one loves a good time more than Scott - if you could have seen him on the dance floor at the RESNA conference in Kansas City, you'd know what we mean! We're biased, but we think we truly do have a "special" son. It's hard to describe, but we feel privileged to be his parents.

COMMUNICATION

The first few years of Scott's life were centered on his surgeries and development of gross motor skills. During this time we recognized that his receptive communication skills far exceeded his expressive skills. By age three, we were looking for ways to help him express himself and found that sign language worked for us. By four, he had a sign vocabulary of about 250 words he recognized and signed. But we later discovered that, while we could understand most of his signs, they were too imprecise for others to follow.

We next tried manual communication books. This showed potential. Scott could make sentences that were meaningful to others. But he was frustrated by his inability to turn pages and find the words he wanted to put his sentences together quickly enough. As with signing, another problem was these books were silent. He still had to get our attention when he wanted to "say" something.

Then when he was five, we "discovered" electronic communication devices. We went gangbusters on it for six months or so and, with the help of our insurance company, he soon had a VOIS 136. He used it in his preschool total communication class along with signing. However, since Scott then weighed only about twenty-five pounds and used a wheelchair, walker, or crawling to get around, he could not lug it around by himself. So, he depended on others to place it in front of him and change his overlays. While his teachers and therapists willingly did so, this did not give him the spontaneity he wanted. Moreover, we usually understood his signs. Thus, the VOIS was used infrequently.

In 1989, Scott began his first year in the Evansville-Vanderburgh School Corporation in a self-contained classroom with eight other children with multiple disabilities. We were very proud to send Scott off to school with his VOIS 136. At their request, I, Paula Guzzo (Scott's mother), spent the first two days familiarizing his new teacher, two aides, therapists, and others with Scott and his equipment. We discussed the use of the VOIS and agreed that we would continue to program it and make overlays as needed. Even with this added training, we soon realized the VOIS remained virtually unused. But we didn't place a lot of importance on this since we had so many other aspects of this new school to get used to.

ASSISTIVE TECHNOLOGY (A.T.) INVOLVEMENT

In April 1990, the Special Education Director of our school corporation, Mr. Lewis Browning, created a multidisciplinary team for evaluating children for AT. I (Paula) was named a parent advisor to it. It was through this team involvement that we were able to attend the RESNA conference in June 1990, in Washington, D.C.

This was Scott's first opportunity to have hands-on experience with computers. He loved it, especially the Touch Screen. This conference was an opportunity for us to make several national contacts. We also observed others with varying disabilities successfully using assistive technology. This motivated us to envision what we wanted for Scott someday and set off all kinds of "light bulbs" once we saw all that was out there to choose.

Indiana had just been funded for its first year as a Tech Act State and I (Paula) had been asked to serve on the project's advisory board as a secondary consumer. After much thought and discussion (each monthly board meeting in Indianapolis would involve a three and one half hour trip each way), we made a commitment to the Indiana project. We felt that we had a lot to offer from a parentūs perspective and we hoped there would be a lot to gain personally by getting started on the ground floor of this project.

Scott's second year of school (1990-91) brought no change in his VOIS usage. There was a major change in his mode of transportation, though. In his first year, he cruised around in his electric wheelchair, fitted with a swing-away arm for mounting his VOIS. But, since Scott couldn't raise and position the VOIS on this arm, there wasn't an efficient way for him to independently use it. Scott began his second year of school with a brand new purple Enduro Little Tykes manual wheelchair. This chair is close to stroller size. To date, we still don't have a good way to attach the VOIS to this chair in a position where Scott can access it.

At the beginning of that school year, an Apple IIGS was placed in the classroom. As I (Paula) had signed up to be a classroom volunteer, Scott's teacher asked me to be the "computer tutor." This was a perfect opportunity for me to learn about the computer, as well as about the opportunities for assistive technology for Scott and his classmates. The kids in the class all loved their time with the computer. When I walked into the classroom, their hands all shot up in the air meaning "take me first". As there wasn't any software for the IIGS, much of the year was spent familiarizing them with the mouse and keyboard. Later a Touch Screen was acquired, which allowed many of the children to successfully use it.

The Indiana A.T. Project, now known as ATTAIN (Accessing Technology Through Awareness in Indiana) also flourished during the year. Through ATTAIN, we attended the RESNA Technical Assistance Project's Specialized Training Workshop on Consumer Responsiveness and Systems Change in March 1991 in Las Vegas. The workshop was the turning point for us. It was there that we understood what Scott's rights really include. We returned home with the knowledge and confidence to ask for what was rightfully Scottūs: access to assistive technology that can help him be all he can be.

STATE POLICY LETTER ON A.T.

At Scott's annual 1991 IEP conference, the team agreed to evaluate him to better understand his learning needs and abilities. We also requested an assistive technology evaluation be done on Scott. Since this was our school's first request for an assistive technology evaluation, Mr. Browning wrote to the Indiana Department of Special Education to ascertain what services the school should be providing to its students in this regard. His questions were answered by a letter from Glenna Greever, Speech/Language Consultant at the department.

Greever's letter has now become a policy letter for the State of Indiana. It affirms that school corporations in Indiana do have a responsibility to provide assistive technology/augmentative communication evaluations. Also, based on a case-by-case decision of the student's educational needs, if this evaluation determines that assistive technology equipment or services are needed for a student to benefit from a free appropriate public education, the school must provide this service and equipment (at no cost to the student).

Mr. Browning sees this policy letter as being vitally important to local Directors of Special Education since they now have a directive from the state which can be taken to superintendents and school boards to assist in obtaining funds for this equipment and related services. As parents, we want to see a copy of it in the hands of every parent who has a child receiving special education services (Editor's Note: The Indiana Department of Special Education policy letter on assistive technology is modeled after the one issued by the Office of Special Education Programs (OSEP) at the U.S. Department of Education. Other systems change projects might want to consider pursuing a similar course in their states).

THE EVALUATION

When Scott began his third year of public schooling in August 1991, it was with much expectation on our part. We knew that this was the year that he was to be evaluated and assistive technology was to become a part of his IEP! In September 1991, Scott was evaluated and the team (now called the ACCESS Team) had its inaugural evaluation!

This evaluation was conducted under the watchful eye of Dr. Flo Taber, a national expert in the area of assistive technology evaluations. We are fortunate that Dr. Taber is able to provide this expertise through funding from the State Department of Education. In advance of the ACCESS evaluation, Dr. Taber had observed Scott and made her own recommendations which remained unknown to the team throughout their evaluation. With much relief on our part, the team came up with almost the same recommendations.

Mr. Browning wisely invited many administrators to Scott's evaluation: the superintendent, assistant superintendent, curriculum director, director of psychological services, and Scott's principal. This gave them first-hand experience on the importance of what the team has to offer and what a difference assistive technology can make in a child's future. When we heard that the superintendent was going to stop in, we programmed Scott's VOIS to say, "Hello, Dr. Schoffstall. Thank you for coming." Upon Scott's introduction to Dr. Schoffstall, he immediately activated the greeting. Dr. Schoffstall was taken off guard but responded positively.

Scott's "talk" with Dr. Schoffstall, while socially pleasant, hopefully served one other purpose. That is, it is vital that school administrators be thoroughly informed of the importance technology plays in the educational setting.

IMPLEMENTATION

We have now been provided with the team's recommendations for Scott. He is to use an expanded keyboard, speech synthesizer and printer along with the computer which is already in his classroom. Software with enlarged print is recommended. Also, Scott's VOIS is currently sufficient and is to be fully utilized. Requisitions for the purchase of this additional equipment are being processed. A case conference is being scheduled to incorporate the ACCESS team's findings in Scott's IEP. We will then give a sigh of relief and wait for the next step: the training of those involved in Scott's school curriculum on this assistive equipment so that they can competently provide services to him.

SOME CLOSING THOUGHTS...

The thrust of this entire article is that what we accomplished for Scott was through a cooperative effort with the school corporation. It is our feeling that monies and energy can much better be spent on equipment and services, rather than on lawyers and courts. Fortunately, our school corporation agrees. We realize that all readers of this article may not be in the same position and we do acknowledge that if a cooperative effort had not been possible for us, then we were willling to pursue whatever end was necessary.

We encourage parents and school administrators to work together. Parents first have to know their rights. They then need to seek support and encouragement form local, state or national groups. Admnistrators should follow Mr. Browning's good example of determining their obligations and take responsibility for following through on them.

We hope that you, the reader, can take heart from our experiences and perservere to get what you need for your own child.