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Scott's IEP includes technology: the Guzzo family's journey.

AS OUREIGHT-YEAR OLD SON SCOTT BEGINS HIS THIRD year of special education in the public school System, we experience feelings of pride as well as concern. We are very proud of the progress Scott is making. Our expectations are continuously raised as he shows his ever increasing desire and willingness to learn.

Yet we are concerned that this desire and willingness may someday be limited by his physical disabilities.

Our primary concern involves his communication skills.

Scott has little speech, and his writing skills are currently limited to his own name.

Communication Problems

The first few years of Scott's life were centered on his surgeries and development of gross motor skills. During this time it was recognized that his receptive communication skills far exceeded his expressive skills. By the age of three, we were looking for ways to help him express himself. We eventually found that sign language worked for us. We pursued this aggressively. By age four, he had a sign vocabulary of about 250 words that he recognized and signed. Unfortunately, we later discovered that while we could understand most of his signs, they were too imprecise to be understood by people outside our family.

Our next plan involved manual communication books. This showed potential as 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 quickly enough to get his sentences put together in a reasonable amount of time.

However, another problem was that, just like the signing, these books were silent. He still had to get our attention when he wanted to tell us something.

By the time he was five, we had "discovered" electronic communication devices. With the help of our insurance company, he soon had a Phonic Ear VOIS 136. We went like gang-busters on it for six months or so. He used it in his preschool total communication class along with signing. This worked as long as the VOIS was placed in his reach. Since Scott only weighed about 25 pounds at the time and used a wheelchair, walker or crawling to get around, there was no way he could lug it around by himself. He depended on others to place it in front of him and to change his overlays. While his teachers and therapists were willing to do this, it did not give him the spontaneous communication he wanted. At home, we continued to understand his signs (usually) and the VOIS was used infrequently.

In September of 1989, Scott began his first year in the Evansville-Vanderburgh School Corporation. He was placed in a self-contained classroom with eight other children who also had multiple disabilities. At the request of his new teacher, I (Paula) spent the first two days at school familiarizing the teacher, aides, therapists and other staff with Scott and his equipment. We discussed the use of the VOIS and agreed that we would continue to program it and make the overlays as needed.

As the school year progressed, however, we soon realized that the VOIS remained virtually unused.

Assistive Technology Involvement

In April 1990, the special education director of our school corporation put together a multidisciplinary team to evaluate children for assistive technology I was asked to be a parent advisor to this team. This was our first formal involvement with any organized promotion of assistive technology (A.T.). The first year of this team's existence was spent preparing themselves to competently conduct evaluations. This included training on hardware, software and methods of access for children who could not use the conventional keyboard.

It was through this team involvement that we had the opportunity to attend the national RESNA conference in june 1990 in Washington, D.C. It was at this conference that we learned of P.L. 100-407, the Technology-Related Assistance for Individuals with Disabilities Act of 1988. Indiana had just been funded for its first year (July 1990 to june 1991). I was asked to serve on Indiana's advisory board as a secondary consumer. After much thought and discussion (each monthly board meeting in Indianapolis would involve a 3 1/2 hour trip each way), we made a commitment to the Indiana project. We felt that we had a lot to offer from a parent's perspective and we hoped there would be a lot of personal gain by getting started on the ground floor of this project.

Since there wasn't any software for the IIGS, much of the year was spent using the tour disk to familiarize the children with the mouse and keyboard. Later in the year, a Touch Screen was acquired, allowing successful access for many of the children.

We attended the RESNA Technical Assistance Workshop on Consumer Responsiveness and Systems Change in March 1991 in Las Vegas. The training we received was the turning point in our quest to obtain services for Scott: We finally understood what Scott's rights really are. We returned to Evansville with the knowledge and confidence to ask for what was rightfully Scott's - an A.T. evaluation to help him attain the goals on his IEP, either directly or through related services.

At Scott's annual IEP conference in May 1991, the participants agreed they would know to better serve him. At that time, we officially requested am assistive technology evaluation on Scott.

State Policy Letter of A.T.

Since this was the first request for an A.T. evaluation that our school corporation had received, the director of special education wanted to ascertain what services the school corporation should be providing to its students. He wrote to the Indiana State Department of Special Education with a number of questions.

Their answer has now become a policy letter for the state of Indiana. It affirms that schools in Indiana have a responsibility to provide assistive technology/ augmentative communication evaluations. Also, 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.)

The full importance of this policy letter in Indiana has yet to be realized. However, statewide directors of special education now have a directive from the state level which can be invaluable 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.

The Evaluation

Scott was evaluated in September 1991 by the team (now called the ACCESS Team).

Our special education director 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 all first-hand experience on the importance of what the team could 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 forcoming." Upon Scott's introduction to Dr. Schoffstall, he immediately activated the greeting. Dr. Schoffstall was caught off guard, but certainly responded appropriately.

Scott's "talk" with the superintendent, while socially pleasant, hopefully served one other purpose. That is, with funding being such an important issue in providing assistive technology and technology-related services, it is vitally important that school administrators responsible for allocating funds experience first-hand the importance technology can play in a child's education program.


The ACCESS team's recommendations for Scott include the use of an expanded keyboard, speech synthesizer and printer along with the computer which is already in his classroom. Requsitions for the purchase of this additional equipment are being processed. Software with enlarged print is recommended. Scott's VOIS is currently sufficient and is to be fully utilized.

A case conference is being scheduled to incorporate the ACCESS team's findings into Scott's IEP. After this conference, we will be able to breathe a sigh of relief and then wait for the next step in this process: the repair of those involved in Scott's school curriculum on this assistive equipment so that they can competently provide services to him.


During this past summer, we again attended the RESNA conference as well as the All States Meeting which was sponsored by the RESNA Technical Assistance Project. There Scott's rights were reiterated. We received a lot of encouragement that what we were doing was right.

We also received advice of a different nature, which we chose to ignore. It was suggested that we be prepared for a long battle: mediation, due process, court cases. This was not what we or the school corporation wanted. What we accomplished for Scott was through a cooperative effort with the school corporation. Money and energy can be much better spent on equipment and services, rather than on lawyers and court cases. Fortunately, our school corporation agrees. We realize that all parents 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 willing to pursue whatever means necessary.

In summary, we encourage parents and school administrators to work cooperatively Parents first have to know their rights. They then need to seek support and encouragement from local, state or national groups, such as we had from the Indiana ATTAIN Project staff and RESNA. Administrators should determine their obligations and take responsibility for following through on them. We hope that other parents can take heart from our experiences and persevere to get what they need for their own child. EP

This article was written with support from the RESNA Technical Assistance Project. The RESNA TA Project is tinder contract with the National Institute on Disability and Rehabilitation Research. However, the contents of this article do not reflect the position or policy of NIDRR and no official endorsement of this material should be inferred.


Although almost full-term, Scott weighed only 2 pounds, 12 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 and short fingers and toes. His first three-and-a-half months were spent in hospitals. Scott has endured 16 major surgeries and endless exams, blood tests, procedures and therapies. He has been treated or seen by over 100 doctors, therapists and other health care professionals. He has been tube-fed his entire life. Needless to say, his medical records are measured in feet. Despite all this, his diagnosis remains simply "multiple congenital anomalies of unknown etiology."


In spite of, or perhaps due to all this, Scott has always had a wonderful personality that people who take the time to know him will never 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 this year, you'd know! 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.
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Title Annotation:9th Annual Computer Technology Directory: 1992; Scott Guzzo
Author:Guzzo, Paula; Guzzo, Bob
Publication:The Exceptional Parent
Date:Nov 1, 1991
Previous Article:9th annual computer technology directory: 1992.
Next Article:Extraordinary children, ordinary lives.

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