Every Minute, Every Problem: Building A Better IEP for Your Child.
The goal of this pamphlet is to argue that the current structure in place for creating Individualized Education Plans (“IEPs”) can be improved with only small structural changes to the process and no changes to the system. I am going to argue for insertion into the process of an early step that features parental involvement in a document that outlines their child’s needs and goals.
At its heart, the IEP process is collaborative; bringing together educators with specialized knowledge, school administrative staff, the child’s own teachers and parents, into one room with the goal of constructing an education plan tailored to the child’s needs. The current paradigm or way that this process tends to work involves much of the heavy lifting taking place within the school-side of the team, with a formulated plan presented to the parents, and potentially modified from there. On its face, this paradigm bring efficiency, as the administrative staff writing the plan are also those with the most knowledge about what resources, what programs, the school has available, and can more easily match programs to needs. The current economic realities also means that schools have limited resources, and are often faced with parents that rightly have many demands that either are impossible to meet or too expensive. The parties can develop adversarial relationships before the administrative side of the IEP team completely understands the context for, the reasons behind, the various demands.
This approach also carries with it several pitfalls. Educators creating these plans are going to heavily favor the programs that are already in place, that they are familiar with. While these programs may work for some or many students, the fact that they worked for one Asperger’s child, for example, is not a real indicator that it will work for another. However, for a busy administrator tasked to write another IEP plan for an Asperger’s child, the natural first step will be to start with an “on the shelf” IEP plan from a previous student with Asperger’s. It is this natural tendency to not reinvent the wheel however, which threatens to make an individualized process into a generic one, at the expense of the specific needs of that next child that comes down the line.
Creating IEP plans with only limited parental involvement also creates what I call the “anchor problem.” That is, once a plan is established, even in draft form for presentation to parents, it becomes very hard to make big changes. The plan is weighed down, in essence, by its very existence on tens of pages of paper, complete with a list of names of experts who have contributed pieces. This is not to say that educators cannot write a good IEP plan; some are excellent, some are poor and most fall on the spectrum in between. The point is that parents know some things about the child, his or behavior, and needs, that the educators do not. This information is crucial but often does not find its way forward under the current process, which is set up in a way that makes the school members of the IEP team the instigators, and puts the parents in the position of reacting.
In the current system, The educators provide most of the information and are the only ones responsible for sorting through the various data. Parents fill out a form, that largely focuses on gathering information on milestones, such as when their child walked or talked. While these forms can ask the parents to provide any other information they think relevant, it is practically hard for parents to think outside the scope of the questionnaire they have just filled out. While a parent might do a great job answering a host of questions about dates and times, they are very unlikely to take a step back, and spend speaking to what they see as the biggest problems or present thoughts on possible solutions. Such crucial insights from parents do not make their way into IEPs by the time they are presented to parents in draft form. While such insights might have led to dramatically different solutions if known from the outset, practically, such information can have only a limited role if added into the process at the end stages. Parents usually end up accepting the recommendations of the IEP team, or asking for one or two items that they have seen or read about others getting for their IEPs.
I am arguing for a small shift in the dominant paradigm that will bring better context to the individual needs of each child at the start of every IEP formation process. I am advocating that the process begins with the parents thinking about what their child’s school day will look like; minute by minute, from when they walk into the school or onto the bus, through every class, recess, lunch period, or special class. Using this timeline, the parent identifies and lists out what problems typically arise during those class or transition times. Then, working from that list of problems, the parent matches up their child’s needs related to that problem, and if possible, presents possible solutions that meet those needs. The resultant document, which I call the “Outline of Needs,” becomes a blueprint for identifying and helping to solve problems. The parent can think freely during this process and need not focus on whether the potential fixes fit within a rule, guideline or known accommodation program; the goal is to start just by focusing on what might help. In many cases, just clearly identifying the need will result in it being resolved over the course of the IEP formation process even where a potential solution is not immediately apparent.
A simple example is the child whose medication makes him both very thirsty, and as a result, needing more frequent trips to the bathroom than the norm. The Outline of Needs for this child would include mention of the medication and its effects in the list of problems. The “needs” section would identify a need to have frequent access to water and unlimited trips to the bathroom. The “solution” section could suggest that the IEP specify that the child has permission to carry a water bottle and to have unlimited trips to the bathroom.
Some of the identified problems will not have easy, identifiable solutions. However, the parent can still identify problems, needs and solutions in broad concept. For example, recess is a major problem for many children with special needs, particular those with ASD. It is easy to identify “recess” as a problem. It is also easy to identify one or several goals for recess. Some parents may want their child to have an opportunity to make friends, however difficult this might prove to be on a busy playground. One insightful parent of an Asperger’s child told me that all he wanted was for his child to “get some mental rest,” and that the typical recess “was anything but restful for my son.” In this example, the Outline of Needs would present recess as a problem, and “an opportunity for rest” as the need. Starting with a goal that recess needs to provide for mental rest will provide excellent direction to the entire IEP team, who can use this framework to problem solve until a solution is found specific to that child’s needs.
The completed Outline of Needs would go out to the entire IEP team, along with the standard completed questionnaire, at the beginning of the process, and provide a foundation for the selection of appropriate programs and accommodations. Going back to the recess example, that simple entry on an Outline of Needs could completely shift how the school thinks about handling the recess problem. The educators might only have been thinking in terms of getting the child involved in the kickball or other game. Now, they will be more focused on what opportunities exist to help the child “get some mental rest.” For the family identified above, the solution turned out to be simply letting the boy pace back and forth in one corner of the playground. The result was a child who worked through some of the noise that built up pre-recess, and who was able to better handle stressful situations post-recess. In another example, a child was permitted five minutes at the beginning of recess to call his father and talk through some of that day’s issues. Clearing those issues out of his mind allowed that child to more effectively rise to the challenges that arose post-recess.
That the Outline of Needs arises from a considered and thoughtful process is also crucial to its ability to help the IEP team work more efficiently and with decreased animosity between its school and parental members. The context that the document provides will bridge gaps. Each item on the list will have gone through a thoughtful process, so a parent is not just asking for something that they saw on a website or heard might be helpful; they will have a specific reason for the request that is clearly spelled out in the document. Simply asking for a water bottle in a school that does not allow water bottles in the classroom is much more likely to be accepted into an IEP when the request explains that the child has medical needs that require the extra water. Providing the reason along with the requested accommodation provides context for the rest of the IEP team. They will understand the reason and be more likely to go along with the plan.
Context is equally important to solving some of the larger problems, like the management of stress issue brought up by the recess example. Many children with special needs do manage to barely make it through the average school day without boiling over or otherwise melting or simply shutting down. However, many parents are quite familiar with that child having nothing left and “losing it” as soon as they walk in the door from school. Crying, yelling, or going completely quiet are all very possible reactions, with an inability to do homework, or have meaningful relationships with parents or siblings a frequent result. The educators, who do not see the meltdowns at home and therefore, cannot know about the need for stress reduction, might look at recess as a time to encourage the development of better relationships. Rather than having those educators draft a plan that involves an aid helping a child play kickball, the process can and should start with the parents providing the context that only they are in a position to know. They are, in this case, in a much better position to understand the importance of stress reduction during the school day, and can provide this crucial context to the IEP team before decisions are formulated; decision that once made are difficult to unmake.
The current IEP process already provides for parental input at an early stage, but from personal experience, the questions are endless, often hard to answer, and the forms do not provide real opportunity for higher level input about the “big picture” problems that the child and his or her family face, and the needs or goals that the family hopes to be resolved. I well remember being presented with my son’s first IEP plan, looking at the stated goals, which included “not hugging the other kids,” and thinking that the school was completely missing the boat. They had heard nothing from us, save for our recollection of various milestones in his physical and emotional development. I should not have expected them to know my son in the way that I knew my son. While these milestone questionnaires do not need to be scrapped, I urge any parent going through an IEP process to consider putting together an Outline of Needs, complete with one section that lists out problems, both general and specific, one that identifies needs, and a problem solving section that identifies both specific solutions where possible, and more general goals when the easy solution is not available. This document will help the educators understand your child in a different way, through a different set of eyes. It will enable you to better communicate yourself and your goals to them, and it will bridge gaps, allowing all parties to understand each other better and more importantly, start the IEP formation process with a better understanding of how to help the child thrive and not merely survive another day.