American Action Fund for Blind Children and Adults
Future Reflections Special Issue: The Individualized Education Plan (IEP) PREPARATION AND PLANNING
by Melissa Riccobono
From the Editor: Often referred to as the First Lady of the National Federation of the Blind, Melissa Riccobono serves on the board of the National Organization of Parents of Blind Children (NOPBC). Despite her deep grounding in Federation philosophy and her extensive experience advocating for blind children, she has found IEP meetings to be a challenge when her own children are involved. In this article she tells her story.
My husband, Mark Riccobono, is now the president of the National Federation of the Blind. Before he was elected president, Mark worked for thirteen years in education—first as director of education for blind children in Wisconsin, and later on the staff of the National Federation of the Blind Jernigan Institute. Mark had very poor experiences with the education system while he was growing up, so he has a passion for creating more opportunities for today's blind children.
I have been blind all my life. I had quality services while I was growing up, and I attended my own IEP meetings from the time I was in first grade. For four years I worked as a school counselor, so I sat at many IEP tables in that capacity. I have advocated at many IEP meetings specifically for blind children in Maryland. I served as president of the National Federation of the Blind of Maryland, and I am now the president of the Maryland Parents of Blind Children.
Mark and I are blessed to have three children. Austin, our eldest, is sighted. Oriana and Elizabeth are both blind. "Wow, you must know exactly what services your children need!" other parents often tell us. Then they add, "I'd love to sit down at your IEP meetings with you. Your school must just see the two of you coming and give you everything you want for your girls!" If only it were so easy!
Mark and I have learned a lot from our participation in the IEP process for our girls. We certainly do not have all of the answers as to what our daughters need, and we have learned, through one shocking experience, that a team absolutely will not give us what we want simply because of who we are. Here are two stories about our IEP journey and some of the lessons we have learned.
Mark and I decided that Oriana would not receive any early intervention services. We thought she could learn all she needed to know at home and in day care. After all, we are both blind people, and we were Oriana's first teachers. Also, since Oriana has some usable sight, I worried about receiving "crazy" recommendations regarding how to "optimize her vision." High contrast between food and plate—no thank you! Colored tape on stairways so she could see the steps—absolutely not! Our daughter was going to learn alternative techniques no matter what!
This approach worked all right until it was time for Oriana to enter school. Mark and I decided that it made sense for her to begin as a pre-K student. We wanted her to learn Braille, and we thought it would be best for her to start formal Braille instruction at the age of four. So I began making phone calls to figure out how to begin the IEP process.
Eventually we got the proper assessments for Oriana, but the process was complicated. The first question I was asked was, "Does she receive services from Infants and Toddlers?" When I said no, I was met with a great deal of puzzlement and conflicting information about what to do next. One lesson learned: Infants and Toddlers would, if nothing else, provide a smoother transition to school. Also, we realized, having some more people to give us honest feedback and helpful suggestions regarding things we could do to help Elizabeth (our younger daughter) learn wouldn't be a bad thing. If some crazy recommendations were made along the way, we could ignore them, and possibly we could educate someone regarding our point of view. So, while we were getting Oriana the assessments she needed to begin her first IEP, we also contacted Maryland Infants and Toddlers to get Elizabeth signed up for early intervention services.
Once we received Oriana's assessment results, Mark and I sat down at the table for her first meeting. At this meeting we were presented with draft IEP goals. A few things stuck out for us, such as Oriana only being expected to recognize 80 percent of the alphabet, but the other goals looked all right. I thought the goals seemed to be worded in a reasonable way. However, Mark suggested that we have someone else—an experienced teacher—take a look just to be sure we were on the right track. We were very glad that we did!
The teacher who reviewed Oriana's IEP pointed out that some of the goals were actually objectives. She helped us craft much more sensible goals and objectives, and she gave us valuable guidance regarding the amount of direct service hours we should request. Finally, she was able to give us many suggestions about how Oriana, as a dual media learner, should balance her day between Braille and print.
Mark and I realized that, although we were familiar with helping others through the IEP process, things were somewhat different here because Oriana was our daughter. The situation was much more personal. Also, since I am totally blind, I learned Braille only. Mark did not learn Braille until he was in college. Having a child learning both print and Braille was new to both of us. We needed to do our homework in order to figure out how best to help Oriana master both of these tools.
Since Elizabeth is our second blind child, you would think things would be easier when it came to her entrance into school. After all, we had been through it once before. Unfortunately, we soon learned another important IEP lesson: expect the unexpected!
In the spring of 2015, Mark had recently been elected president of the National Federation of the Blind. Largely because of his new demands at work, we made the decision to move out of the house we had lived in for almost eleven years and into a house within walking distance of NFB headquarters. We were only moving across town and not across the country, but our belongings still had to be packed; things needed to be thrown away, sold, or otherwise gotten rid of; countless small details had to be taken care of; and we needed to get our old house cleaned up and ready for renters. Meanwhile, Austin and Oriana still had to go to school, meals needed to be cooked, and laundry needed to be done. In other words, it was a stressful time for all of us.
In the midst of this madness, three days before the movers were scheduled to come, an evaluation meeting was scheduled for Elizabeth, who was about to turn three. The meeting was being held to go over the results of various assessments and decide whether she would stay in the Maryland Infants and Toddlers Program or receive services at a school under an IEP. The National Reading Media Assessment (NRMA) showed that Elizabeth, like Oriana, needed both Braille and print. There was a half day preschool program at the Maryland School for the Blind, where Elizabeth could receive services, including Braille, and begin her formal school journey. (Yes, another lesson learned: Looking back, it would have made sense for Oriana to begin formal Braille reading practice a year earlier as well!)
I viewed this meeting merely as a formality. In fact, I told Mark I felt very comfortable attending by myself, since the meeting would only formalize everything we had already put in motion. Off I went to the meeting, confident in its outcome, and slightly annoyed that it had to be scheduled at this extremely busy time in our lives.
Unfortunately, the meeting did not go at all as I had expected. The powers that be would not grant Elizabeth an IEP or permit her to enter the preschool program at the Maryland School for the Blind because she was not showing any educational or developmental delays! It did not matter that Elizabeth was shown to need Braille, and that early exposure to Braille would help her become a stronger reader. It did not matter that we were not asking to have a special program developed just for her; we were asking for her to attend an existing program that was capable of meeting her needs. It did not matter that we, as her first teachers, had worked with her to make sure she learned the things she needed to learn so she would be ready to attend school and focus on new skills. All that mattered was that a team of professionals, most of whom had never even met Elizabeth, had decided that she was too "advanced" to qualify for special education services.
How did I feel when this meeting was over? In one word, I was livid! How could this be happening to Elizabeth? How could educators make such a decision with a clear conscience? How could they deny Elizabeth services now, and only grant them to her down the line when she became delayed due to a lack of services? What a horrible educational model, one that pays more attention to fixing delays and overcoming deficits than to building on strengths and providing tools early so kids can reach higher than most people would think possible!
Fortunately, this story has a happy ending. After many phone calls and one memorably furious email, we managed to convene another meeting, with another team, for Elizabeth. (Incidentally, Mark attended that one with me!) At that meeting (surprise, surprise!) Elizabeth was found to need services. She was granted an IEP and a place in the preschool program at the Maryland School for the Blind.
Aside from learning to expect the unexpected, Mark and I learned several other lessons from this experience.
Once again we were touched by the support we received from the National Federation of the Blind. Although ultimately we were able to resolve this issue on our own, we were very grateful for the great legal advice and offers of help we received from many members of the NFB. If their help had been needed, I know any of these individuals would have been willing to attend meetings with us in order to get the services to which Elizabeth was entitled.
Our IEP journey with Oriana began three years ago, and Elizabeth's journey has been going strong for two years. Now Oriana is a first grader, and Elizabeth is in pre-K. Both of our girls attend the same public charter school as their brother.
Obviously, our journey is far from over. Mark and I are still learning lessons during each IEP meeting we attend. We struggle with the same things all parents do. We want what is best for our girls. What is the best way to get them all of the things they will need to be successful? When do we push for more? When do we accept what is offered and supplement with other opportunities outside of school? How do we bring enough Braille into the classroom so both girls will become fluent readers? Which issues are nonnegotiable, and what are we willing to give up when we bargain? These are the questions we ask ourselves before, during, and after every meeting we attend. I am sure many of you have asked similar questions.
We know we will make mistakes—no parents are perfect! The important thing is to learn from those mistakes and fix them as we go forward. For us the most important thing of all is the support we receive from our fellow parents and colleagues in the National Federation of the Blind. We are all in this together. We all need to support one another. Thank you all for teaching us so many things. And thank you for allowing us to share with you what we have learned.