Tuesday, October 15, 2013

Educational Advocacy Series: Part Two

CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series in October dealing with Educational Advocacy. This post is Part Two in our October Series. You can read Part One here.

Scott’s Journey, Part Two: "Get it in Writing!"

In response to comments to last week’s entry about Scott’s first five school years: Scott’s placement in a segregated setting is what was considered “best practice” at that time. It’s refreshing to hear that people are surprised. We hope that the educational best practice of inclusion is now taken for granted.

Moving to the second part of Scott’s Journey. . .Scott was bussed across Evansville for five years to the class for children with multiple disabilities in a public school. His teacher understood that we wanted Scott educated with children in a general education (inclusive) setting. She found a first grade teacher who let Scott and an assistant come to her class for reading class. Other teachers let them attend reading, art, and music classes during subsequent years in that school--the result of “agreements.” Scott learned and made educational progress in that setting.

Scott's 1st day at Highland Elementary, our neighborhood
school. August 29, 1994.
During those early school years, Bob and I interviewed adults with disabilities throughout the country about their education, and we asked how they believed Scott should be educated. Everyone recommended an inclusive setting. These interviews contributed to our mission for Scott’s case conference committee that year and from that time forward: general education class in his neighborhood school with appropriate aids and supports.          

When it was time for Scott’s brother, Aaron, to enter kindergarten, we wanted both boys educated in the same school—our neighborhood school. Another parent (of twin girls with CP) and I met with our neighborhood school principal sharing our mission and further stating that we believed special education services could be provided in any school. He agreed and said he would welcome Scott and the twins.

Bob and I discovered that students with multiple disabilities were being successfully educated in inclusive settings in other school districts. We talked with their parents to see what attributed to those successes. We spent hours documenting Scott’s strengths and needs in all areas of his life. We wrote a ‘parent report’ to be presented at the conference. (A future blog entry will be solely dedicated to the parent report.) We wrote out the general education teacher’s role, the teacher of record’s (TOR) role, the resource room teacher’s role, and the necessary requirements of an aide to provide educational support and personal care to Scott.

Once word got out about our mission for Scott, a few other parents of children with disabilities called saying that’s what they wanted, too. So, at spring conferences in 1994, families worked with our school corporation to move five children with disabilities from segregated classrooms into inclusive classrooms. Scott was the only one classified as “multiply disabled.” Even though Scott was 10, we decided that he should be in a third grade class since he was ready for the third grade reading curriculum. More importantly, we’d been advised that 8-year-olds would be more accepting (compared to 10 year-old fifth graders) to a student with multiple disabilities.

Eleven hours of conferences with 19 people sharing and receiving information about Scott achieved the mission that he would transfer to his neighborhood school, be educated in a general education classroom, receive pull-out resource supports, and have the services of a dedicated classroom aide. We celebrated. . .until the written IEP was received. It did not include these three main points!

Scott and his classroom assistant, Karen Maxey.
(We’d previously learned the hard way that Scott’s rights weren't protected if “agreements” weren't written in the IEP. Years earlier we had an unwritten agreement that Scott would have increased speech services. He received those services; but, during that year the TOR took maternity leave, the speech therapist took medical leave, and the principal resigned. Bob and I were the only ones left who’d been in on the original agreement. The new TOR, speech therapist, and principal were obligated to provide the lesser services that were written. We had to conference again to get the increased services written in the IEP. . .a delay which could have been prevented if only it had been written when agreed upon!)

So, we wrote a letter to the Case Conference Coordinator explaining that we would sign the IEP only after the above three points of our mission were included. She apologized and explained that this was new to the school corporation. She corrected the IEP. We signed the IEP, and we never looked back.

Worth noting: I advise parents to NEVER EVER sign a blank IEP. One wouldn't sign a blank check, and one surely should NOT sign a blank IEP! Always read through the completed document and ensure that everything that was agreed to in the meeting is included in the IEP. If the IEP needs correcting before being signed, document the issues in an email or letter to the school and wait for the document to be corrected before signing it.

Our neighborhood elementary school principal hired an assistant. She worked with Scott from third grade until he exited the Evansville Vanderburgh School Corporation 10 years later. She was with him in all classes, at elementary band concerts, at middle/high school choir concerts, and at high school play rehearsals and performances. She went on field trips and work experiences. She was crucial to Scott’s success as were the attitudes of the many administrators, teachers, staff, and therapists who were a part of Scott’s journey.

High School Graduation! May 2004.

Scott remained in a general education setting until he graduated in 2004.

We now know there are benefits to inclusion that we did not anticipate. Some of Scott’s classmates have shared that Scott impacted their lives: some chose medically related careers because of him; some are teachers who are not afraid to have a differently-abled child in their class; some are parents of children with special needs who have said that they were better prepared for their own journey because of Scott; some are in jobs where they have opportunities to hire workers and are willing to select people with disabilities because of their classroom memories Scott.

Please do not read this and feel sorry for Scott or us. Instead, celebrate the victories and know that one person / one family can and does make a difference.



  1. I love and respect you all for your journey was a very challenging one .
    Each person with a disability has varying degrees of challenge ,heartache , joy and amazing victories !
    Scott my cool bud you give me so much courage ! Show them all !

    1. Thank you for taking the time to comment, for the love and for the respect. It's a journey that I've been blessed to be on! Scott also enjoyed your comment and said he'll always try!

  2. Love, love reading about your experience. We can all benefit from reading your history with education and advocacy. Thanks so much for sharing!

  3. I love this post.It is really inspired me.General education classes should provided in any school.So that any person with disability can achieve educational challenge with others.

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    1. Thank you for letting us know you're inspired by Scott's journey. Your comment is spot on. It should be taken for granted that people with and without challenges can all be educated together. One of my joys is reading or hearing about others in inclusive educational settings today being surprised that it's not always been that way.

  4. xoxxo The best Paula..Miss you guys on the trips One day we will be back..hugs to you and the family and Scott of course..Lorraine and Zachary

    1. Lorraine, Thanks for the kind words. We would LOVE to see you and Zachary at a retreat again!

  5. Paula Love your story..your courage..your faith and you and scott and the family in general. Bless you and miss you guys really..some day we will be back to see you on retreats..hugs till then..Lorraine and Zachary..xoxxoxo...

    1. While meeting up again at the CCA Annual Retreat would be wonderful, if you ever find yourself near Evansville, Indiana, let's get together! Much love to you and Zach!

  6. I love your entire family.. You have paved the way for many children to lead fuller, more productive lives and to enjoy the world they live in. As I watched Scott last Sunday sing his rendition of "Tie a Yellow Ribbon" my heart swelled up with pride and a rejoiceful tear slid down my cheek.

    1. Apologies on the delay in response. Your kind words are appreciated. Many times we were simply on our journey and didn't even realize we were paving the way. Other times, it took every bit of our energy to fight like tigers alongside others to make the necessary changes to help pave the way. Scott does love music and sings with joy!


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