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What is a Good Advocate?

Copyright 1999 © Roger N. Meyer

In this and two subsequent articles, I describe the working relationship between parent(s) and an advocate. For the purpose of this three-part article, I assume that the advocate is a professional, not a friend or acquaintance who you ask to accompany you to an IEP or other special education meeting.

The client-advocate relationship is not a casual one. Advocates do not "do favors." They perform services, and very specific ones at that.

Advocacy involves a number of steps.

GATHERING INFORMATION

The Intake Visit

In order to work effectively with you, the advocate needs a good understanding of your child. This information comes from you and other caregivers. The advocate benefits from knowing how your child behaves at home and in non-school settings. In getting to know you, your family and your special needs child, the advocate should know your child's educational history. This information includes your child's entire educational history, not just involvement with special education. Additional relevant information involves your child's degree of mastery of self-care, methods of communication, mastery of language, sleep habits, favorite interests, "style of learning," response to stress, and meltdown and tantrum behaviors. In sharing this information, you provide the advocate with an understanding of your child's needs and how he expresses and satisfies them. Photographs, family videotapes, tape recordings of conversations, and other "objective" means of permanently capturing this information are valuable tools, both for you and the advocate in "presenting" your child to school personnel.

If you wish to use an advocate from an agency, ask if the advocate takes time at home with you and your child apart from time before the actual school meeting to get to know your issues. If the advocate does not operate this way, thank him/her politely for the time spent and find someone who works in an unhurried manner. You should not feel "rushed" by any professional.

During the home visit, the advocate should see any current information the school has provided you regarding your child. This information may consist of your invitation notice for the upcoming meeting, copies of any recent IEP documents, and any independent evaluations and reports. During this meeting, the advocate should help you identify the issues most important to you that you wish discussed at the meeting. S/he should help you prioritize your issues. Your child's current needs should be the focus of the list, not "old history." If you have old issues requiring closure before you feel you can proceed with this matter, the advocate should help you "tie" those issues to your child's needs already identified on your list.

If the advocate charges for his/her service, the advocate should discuss fees and payment methods. Both you and the advocate should be "on the same page" regarding how you contact one another. The advocate should describe how s/he works, and you should be comfortable with that in order to assure good communication and a solid partnership arrangement.

The pre-conference meeting

At least an hour before your meeting at the school, you and the advocate should meet at an off-school site. The purpose of the meeting is for you to share information about how your day has gone so far, how you feel going into the meeting, and new issues that have arisen since your last meeting. You can review your list of priorities, and revise the order of importance, and add or delete items. This list is your agenda. There is nothing "in the rules" stating that you cannot present your agenda at the starting point of the school meeting

You should then agree on cues for who does what, when, and how to inform each other of things going well or things going wrong, or who is to be "on" at any particular time of the meeting. You should discuss how to "take a break" or request time to confer with one another privately. This is very important. Parents can get very upset when their advocate "takes over" the meeting or acts or talk on behalf of the parent almost as though the parent is not in the same meeting. Advocates are your servants; you are not their donkey.

CLIENT-PROFESSIONAL RULES OF THE GAME

Advocates shouldn't either be abused or taken for granted. They should be there to work with you. Your relationship should be a collaborative partnership. In order for you to feel comfortable at later special education meetings and at times when an advocate is not present to assist you in contacts with the school, you should be open to learning how to handle things in a different way from this point forward.

The advocate is a resource. Your terms of partnership and your working relationships are the key to your success as an effective self-advocate. You should be prepared to share roles in things you previously handled on your own. If your advocate finds that you wish to continue directing all the shots and even sabotage your own case rather than sharing the work, they will react to this behavior as professionals and as human beings. They too can be pushed to the brink when you are not on the same page. Staying on that same page together is a responsibility you both share.

Effective working relationships with any professional, whether paid or unpaid, depend upon a sense of mutual trust and comfort with one another. It is the advocate's responsibility to "break the ice," and do everything possible to assure such an environment. Parents under stress must recognize that advocacy relies upon mutual good will as the glue to maintaining an effective client/advocate relationship.

Advocates have to know the law, both the written special education law and regulations state and federal, and a lot about how things "actually work" in your school and your district. This information permits them to know how to relate to you and the school authorities at different levels.

What the advocate knows

Below is a list of what an advocate can learn about the way your school and your district manage the special education process.

• Whether the school authorities always set the agenda
   
• Whether school personal conduct other business at the meeting not related to your child's special education
   
• Whether the school personnel expect a meeting to be governed by their wristwatches and the school bell
   
• Whether the meeting always closes with some kind of a signing ritual (or ceremony)
   
• Whether the school routinely expects a parent to be uncritically deferential and "a good parent"
   
• Whether meetings occur with intimidation and threats, veiled or direct
   
• Whether administrators "single out" the parent(s), blaming the parent and child for problems, and victimize the parent(s) and child
   
• Whether the school personnel "turn the table" by characterizing themselves as the victims of parent harassment and abuse due to parent exercise of their civil rights
   
• Whether the meetings consist of name calling, telling of untruths, the hiding of information, failure to disclose critical information which is essential to making an informed parental or student decision, or failure to provide critical information in advance
   
• Whether the school personnel routinely spring new items on the parent(s)
   
• Whether school personnel constantly focus on the negative in discussing the child and, routinely apply negative discipline, withdrawal of privileges or rights as a means of assuring student compliance with instruction or training
   
• Whether the school uses positive behavioral reinforcement in correcting "behavior issues"
   
• Whether the school writes IEP's directing the child's behavior, performance or educational progress with no indication of how the child is to be instructed, trained, or otherwise supported to achieve those goals and/or objectives
   
• Whether assessments and measures of your child's progress are based on subjective criteria such as "teacher observation" or other unverifiable means and measurements
   
• Whether the school uses standardized forms with "just so much room" or "this is how we've always done it" as an explanation in presenting parents with an inadequate or inappropriate form
   
• Whether the school uses the "short and quick" approach to IEP Team meetings, traditionally limiting them to as little as a half hour or hour, and always expecting things to be "wrapped up" completely by the end each meeting
   
• Whether the school routinely overloads the agenda with the knowledge that some things will remain unsettled at the close of the meeting, leaving room for later unilateral action without parent knowledge, active participation informed consent

Once your advocate knows the answers to these and other related questions, s/he can work more effectively on your behalf, and by extension, every other student in special education at your school and your district.

A BRIEF OVERVIEW OF THE SPECIAL EDUCATION MEETING

There is one predictable thing about school about school administrators. They are slaves to the time clock, inertia, and standardized ways of doing things. None of this has anything to do with special education and your child. None of these practices encourages teachers and service providers to consider the unique needs of your child. These practices have everything to do with school convenience, "treating all children equally" in an unequal world, and viewing their roles as livestock herders rather than educators.

Please note that I said administrators not teachers. Many school officials often have nothing to do directly with your child -- in fact, they may never have seen or met your child -- yet they set the policies and the tone for the entire special education environment, especially the evaluation and IEP Team meetings. By "running" the meeting, controlling the agenda, and assuring staff agreement before hand -- thus discouraging frank and open discussion and difference of opinion in the meeting with the parent and student -- administrators clearly demonstrate who is in charge.

These are the things the advocate must understand and which as a parent you can begin to appreciate as the advocate pokes and prods for information, gently testing participants for their knowledge about your child, his disability, and how they work with your child. Not any child. Not all the children. Not any children with your kid's disability. If the participant responds with "all" or "many" much of the time when describing how they work with your child, this is a good indication that the person has pushed to find a way to squeeze your child into a general category. This attitude is not what special education is about.

A good advocate asks neutral informational questions which don't challenge a teacher or specialist's competence as much as they reveal the extent of the person's attitudes, and genuine interest in the participant's field of school or self-designated field of expertise. Once the "experts" or the teacher working with your child share this information verbally before others and yourself in the meeting, you can gauge the degree of acceptance and comfort others have with their remarks.

If you and your advocate are interested in making permanent improvement to your child's special education, it may be necessary to suspend the agenda for the purpose of doing some polite re-education about the focus of the meeting: your child, his/her unique needs, and the partnership and collaboration between the administrators, teachers, specialists, parent and child that IEP Team meetings are designed to foster.

Each evaluation or IEP Team meeting is different, if for no other reason than you and your child (whether in person or not) are there. Your advocate is there to assure that the evaluation and IEP Team process follows the rules of the game as established by the law and regulations. The advocate assures that you are accorded the respect and recognized in your role as an active, informed participant to the special education evaluation and planning process.

One final thing to keep in mind. The advocate partners with you only a small portion of the time you and your school personnel actually interact with one another. One of the most important duties of an advocate is to assure that when s/he closes contact with you, that you can continue on your own in relating in a different way with the school.

You and the school personnel are "in it" for the duration. At most, the advocate can be a short-time visitor in your life and that of the school. A good advocate views his/her role as that of an educator, not a mere parent assistant. Effective advocacy results in education for all parties. From the commencement of their service to you, good advocates should have an objective of working themselves out of their jobs with you.

My personal style involves a commitment to changing the way the system deals with its parents and students. That's why I bring information to IEP meetings not only for the parents but for school personnel as well. IEP's are hard work, and crafting a good one may take many hours and several meetings. Most schools have no understanding of how effective a good IEP can be. Many parents don't know either, having in the past been faced with a blank wall by their school authorities. The wall may represent resistance; it most assuredly involves lack of good information about the special education process and what parent/school partnership is all about. In situations where it is apparent that the school authorities actually are uninformed and don't know, the parent and advocate stand to gain much in careful, sensitive modeling of problem-solving skills and imparting information in a non-threatening, non-adversarial way.

Just as with training and educating your child at home, learning the ropes of a new process involves trust, time, patience, and mutual respect. If in the past, parent/school interaction has been characterized by power struggles and wrangling over who gets to the top of the mop handle first in a game of "hands on", reversing "bad education" may take some time. If this has happened to you, don't expect the first meeting to produce miracle results or to even address many of your burning issues. Your objective may involve a dynamic of preventing further damage to your relationship with the school, and of stopping further damage to your child. As Jimmie Durante used to say on when scripted "madness" needed stopping on his television show in the 1950's: "Stop the music! Stop the music!" Just bringing a halt to this dysfunctional juggernaut may involve a whole meeting's time. Perhaps more than one.

Once the first "successful" meeting is behind you, school authorities may realize that the old way of doing things died in the first minutes when you and your advocate swept aside the school agenda and took charge of your IEP. You did this by presenting your own agenda first by clearly enunciating your child's needs and asserting your parental rights to engage the school personnel on an even playing field.

It may take several "reminder meetings" to encase the process in stone. People forget; people don't relish being reminded of hard work they must do. It may be necessary to repeat the process the following year, or when your child transitions to a new school.

No one has ever said this work is easy.

But, it is doable.

About the author

Roger Meyer is a 56-year-old Portland resident diagnosed with Asperger Syndrome in the summer of 1997. He traded in his 26 year-old cabinetmaker's apron for human services work as a parent/student special education advocate, consultant, in-service trainer, job coach, and professional author. Jessica Kingsley Publishers in England have accepted his book on employment issues for individuals with Asperger Syndrome for publication later in 1999. Jessica Kingsley Press is the leading publishing house in England specializing in developmental disabilities and autism. He can be reached at

rogernmeyer@earthlink.net

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