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As an attorney, arbitrator, mediator and loving mother of an autistic daughter, Ihave a unique perspective on the process by which families prepare theirchildren's Individualized Education Plans (IEPs).
The IEP meeting, required by federal statute, is convened at least once a schoolyear to plan an educational program that is tailored to the needs of each disabledchild. The child's "team" attends the meeting: teachers, therapists, parents,school administrators, and any other invited parties.
So far, our family has had success with Amanda's education in our district. Shehas been fully enrolled in standard district programs - Early Childhood and thengrade-school inclusion - and has made significant educational gains. We havebeen able to get the district to agree, with minimal or no conflict, to provide all theservices we felt she needed in her IEPs.
Over the years, many parents have told me battle stories about their children'sIEPs. They comment on how "different" Amanda's experience has been fromtheirs, even within the same district. Maybe so.
Certainly, my daughter's innate abilities have emerged, and in so doing, havegiven her more skills as she goes. Success truly breeds success. I can take nocredit for the marvelous daughter God gave me.
However, Amanda would not have been able to be successful if the rightopportunities were not available to her. This is where good advocacy can makeall the difference.
Advocacy is by its nature, a cerebral activity and involves great thought andcreativity. Parenting is by nature a visceral activity that involves great emotionsand heavy decisions.
I know first hand how the feelings that come with children, especially disabledchildren, overwhelm and confuse us. No words can adequately explain the dreadand anxiety that accompany us everywhere we go. We belong to a select club,an elite group of people, who speak a foreign language ("IEP", "OT", "PT") other parents do not know. We emit sensitive radar that only those of our own kind candetect, often with one look.
For the sakes of our children, we must strive to be patient with those whoseexperiences have not given them access to our perspective. It is our duty to leadthese people to a fuller understanding of the beauty and ability within ourchildren. To do this, we must become effective advocates.
Good advocacy often works like a game. I do not suggest that advocating for theneeds of special needs children is trivial. It is just that the method of getting whatyou need from a school administration has rules and strategies that are oftenquite predictable.
If you learn and apply these rules, you can reduce the risk that is inherent whenyou negotiate for educational benefits. I liken this to the difference between pokerand hearts.
Poker is a stimulating game of wager. The fun, the skill and the whole game is inthe bet. In truth, the cards make only a marginal difference to the outcome of thehand. It is not what you have in your hand that matters as much as what theother players think you have.
Every hand is a winner, and every hand is a loser. By manipulating the otherplayers at the table, making them believe what you want them to believe, you winthe bet. You do not really need to have a strategy for the cards: if you understandpeople, the cards will play themselves.
Hearts is different. Hearts is all about having a strategy for the cards: how youplay the cards given to you. What the other players think or feel is less importthan getting them to play their cards in the order you want them to! Yes, there is minimal bluffing, but at tremendous risk. This is because everyoneis paying attention to the cards, not the players. However, the rules of the gamegive talented players a chance to unload their worst cards at little or no jeopardyto themselves.
In fact, the best hand at hearts is the worst hand played skillfully! If you have awretched hand, and take every trick, you end up winning the round! Moreover,even if your round goes badly, the game keeps going, hand after hand, until allhands are played.
Many parents and advocates involved in IEPs use "poker" language to describethe process. They have come to believe that districts, overall, do not act in goodfaith when setting IEPs, and that they will cheat.
They do not want to "tip their hand" or "show their cards". They talk about thepersonalities of the school administrators and staff. Are they bluffing? What aretheir cards? Are they holding back? Do they care about my child? Do they careabout disabled kids in general? When parents feel like they have to battle educators for benefits, they loseconfidence in those educators. When parents lose confidence in their educators,those educators (who are often acting in good faith to do an extremely difficultjob) feel unappreciated.
A siege mentality sets in, lines are drawn, and the parties toss therapies andinterventions onto the table like chips. They wager with the child's needs, butrarely does the child walk away with any of the pot. This is why playing poker atan IEP does not work for the children.
Like hearts, advocating in an IEP might take many deals. The players,sometimes with competing goals, sit down year after year and look at theirhands.
What progress has the child made in school? What skills does he or she havenow? What are the demands of the next grade? How well equipped is the districtor the staff to meet these needs? What resources do the parents have? Most of the answers to these questions are known to most of the parties at thetable. Unlike poker, which allows for more uncertainty to sweeten the bet, IEPsleave little to bluffing.
Either the child has abilities in certain areas, or he does not. Either she canattend in a regular education setting, or she cannot. Either the staff is prepared todeal effectively with this particular disability or they are not. And so on. A skillfuladvocate, like a skillful hearts player, knows when and how to play certain factsin the file so the child does not bear an undue burden in the education process.
Here are eight steps for parents to learn. These steps will help the parentnegotiator minimize conflict when dealing with good-faith district negotiators.
They will also help you prepare a solid case when negotiating with districtpersonnel who are acting in bad faith: 1. Make every attempt to sustain relationships.
Like the many hands in a hearts game, IEP negotiations play out over time. Agame of cards is always more enjoyable when played in a group that likes andrespects each other. Try to get to know and personally connect to the other teammembers.
Whether or not we personally like our child's teachers, school psychologist,school social worker, principal or other administrative personnel, we are stuckwith them unless we move. If we move, we will be stuck with new school officialswith whom we have conflict. Or new, difficult people will be promoted intoestablished positions.
In any event, we have to learn to work with people we do not understand, agreewith, or get along with. They are there, and will be there all year, year after year.
Getting personally angry with them, even if they deserve it, lead to hostility downthe line.
Now hostility can have its place, as in a lawsuit or a Due Process Hearing.
However, if parties get that far in their fights, any chance for a workingrelationship is dead. Since it is in the best interests of our children to have acohesive team working towards a common goal, we as parents must take aleadership role in sustaining the team atmosphere.
We cannot lead a team we do not join.
It is not enough to come into a meeting, periodically and make demands; evenlegitimate, legal demands. We must model the behavior we want to draw out inour children's IEP team.
If we want the other team members to be patient, prepared, and educated aboutour child's needs, we must set the standard.
We must be understanding of them and the demands on their time.
We must be patient with them as they learn our child's method of learning.
We must be prepared and secure helpful test results on our child's development,articles or other related materials, and then share them; andWe must be as or more educated about the objective realities of our child'sdisability so we can talk to other team members as peers.
Before we make any demands on a team member, we must ask ourselves, "Am Iasking of this person something I have not done, or am not willing to do?" If someone did something helpful, remember to say "thank you!" When we can demonstrate that we are doing our part, it is more reasonable topress others to shoulder their responsibilities.
2. Keep the focus on the child's needs, not the district's resources or the parents'expectations.
Under the Individuals with Disabilities in Education Act (IDEA), Congress setforth certain protections for children with special needs. At its core, IDEA isdesigned to make sure that disabled children have access to a "free andappropriate public education" in the "least restrictive environment".
The United States Supreme Court has been relentless in their insistence thatIDEA may not be used to force a school district to "maximize" a child's"potential". If a child is getting a "meaningful educational benefit" and makingprogress that can be objectively measured, then most courts will conclude thatIDEA has done its job -even if most parents would consider the results basic orminimal.
Most schools pride themselves on doing more than passing work for theirstudents, even their disabled students. Clearly, those with the highestexpectations for children are the parents. This is why we are here.
Yet, many parents engage in the IEP process without having tangible educationalgoals, let alone a plan to accomplish these goals. Without a plan, the IEP, schoolstaff, and parents will flounder.
Let me share an example. Our goal for Amanda is to teach her to function as anautistic person in a non-autistic world. We do not expect the District, or anyoneelse, to cure her autism. Each decision made for her - educational and otherwise- is shaped with this plan in mind. This simplifies things.
When we read a map, we have a starting point and a destination. We plan ourroutes and back-up routes from these two variables.
How do you know where you are beginning? Get the child tested and find out!Parents must obtain independent medical and/or developmental assessments fortheir disabled children! Without clinical data, there is no reliable starting point forthe journey.
Yes, these tests are often burdensome and expensive. Do them anyway. Ourchildren's abilities and disabilities are the cards in our hands! How can we decidehow to play them if we do not look at them first? These evaluations bring parents on board. They force parents to understand theprecise nature of their child's disability, and in so doing, obtain the necessaryinformation to formulate a cohesive strategy for dealing with it. This is especiallytrue if the nature of the disability has a hidden educational impact.
IDEA only requires school districts to pay for special services like speech,occupational or physical therapy if doing so gives an educational benefit, not justa medical one. In other words, the disability has to effect learning.
I emphasize the need to have independent clinical medical, psychological, and/or educational or evaluations done -not evaluations through the school district orby a practitioner selected by the district. Because IDEA has provisions, which,under certain circumstances, require school districts to pay for evaluations(ostensibly to make the field more level for low-income families), many parentswho can afford an independent evaluation fail to get one.
However, school district evaluations are still school district material. If there is ahearing or lawsuit, these tests are crucial evidence. Parents will have more faith in the truth of these tests when they choose the professionals who administerthem. In the event that a test does not accurately reflect a child's abilities, parentswho get these evaluations independently have a choice about whether to sharethis information with the district - something they could not control if the testswere done by the district.
These outside evaluations have another benefit in that they relieve the partiesfrom subjective disagreements. The results speak for themselves. No one is toblame for this information. In fact, third-party reports give a willing schooladministrator a way to justify a difficult or politically unpopular decision to grantservices.
When Amanda was going into kindergarten, I wanted her to a full-day programwith kindergarten in the morning and Early Childhood in the afternoon. Ourdistrict had a "policy" (read "budget issue") against this.
When I took Amanda to her yearly reevaluation at the University of ChicagoDevelopmental Disorders Clinic (a nationally recognized leader in autismdiagnosis and treatment), I was able to persuade the U of C team that Amandarequired the full-day program. They gladly made this recommendation in theirreport.
This relieved the sympathetic school administrator (who granted the request)from having to make the judgment herself. After all, if her boss disagreed withher, he would have a much harder time disagreeing with the University ofChicago! With independent reports, everyone is off the hook and can bring themselves,defense-free, to the great task of addressing the child's problems. Once we knowwhere we are, we can decide how best to get where we are going. Onceeveryone has an objective sense of a child's abilities, they can develop a plan toteach that child.
SPECIFIC, MEASURABLE, REALISTIC IEP GOALS The IEP is designed to list specific educational goals for the child. Make sure thegoals are realistic, specifically stated, and penned in layman's terms. As theschool year unfolds, the team can look at these goals to objectively assess thechild's progress. To this end, IDEA requires that the goals as they appear on theIEP form must be something that can be objectively measured.
Avoid generalized goals, as "Johnny will be able to attend in the classroom withincreasing frequency". This phrase leaves Johnny's progress open to subjectiveevaluation. Disagreements about subjective evaluations lead to bluffing anddefensive postures on all sides. Where does this leave Johnny? If the goal read: "Johnny will be able to complete grade-appropriate class workduring class time, up to 75% accuracy" the parties can evaluate what Johnny isdoing in class and objectively measure this against the goal. If Johnny cannotfinish a spelling test with his class with 75% accuracy, the team can agree on hisinability to meet the goal.
This keeps the focus on Johnny and away from the other team members. Wheneveryone can agree on the problem, it is much easier to brainstorm about newinterventions that can help him learn, or whether the goal should be modified(e.g.: "…up to 50% accuracy", etc.).
PARENTAL EXPECTATIONS V. DISTRICT RESOURCES A word about parental expectations and school district resources. Thesecompeting interests are present in every IEP. They represent an inherent tensionin disabilities issues. Parents want the best for their children. School districtshave to provide basic services within a clearly stated budget.
Never ignore these dynamics in an IEP. They are always there, even if districtsare not supposed to consider budgetary concerns when they formulate an IEP.
In negotiations, emotions are often the problems to be solved.
Parents should never treat the school team as if they are sitting on limitlessresources. School personnel should never forget the legitimate emotionalinvestment each parent has in his and her child. Parents should attempt tooccasionally see their child through the eyes of others. School personnel shouldtry to be creative with what resources they do have.
Neither parents nor schools can wave a wand over a disabled child and makethat child's problems disappear. Yet, the parties often treat each other as if thiswere true.
Parents sometimes have expectations of their schools that reach beyondacademics. They want their kids to fit in, love learning, and have predictable, pleasant school experiences. Often, kids with disabilities can do many of thesethings. Sometimes they simply cannot.
Schools, even the best of schools, can harbor frustrations that impede learningand fitting in. These frustrations should be whittled down until only those hurdlesthat cannot realistically be removed remain.
Similarly, schools have rhythms that cause unnecessary pain to a disabled child.
Simply telling parents "this is how we do things" is an inappropriate attitude.
Disabled children may not be penalized for bringing their disabilities to school.
Teachers and students must make every reasonable accommodation to welcomethem.
3. Always provide "face saving" ways out of a dilemma. Have a back-up plan.
Mediators know that this is the secret of successful mediations. We call it thedifference between positional bargaining and principled bargaining.
Assume we have two parties who are arguing over one lemon. Each takes aposition and insists on having the whole lemon. No compromises. They go to ajudge who uses the rules of basic adversarial procedure to resolve their problemby dividing the lemon in half -to no one's satisfaction.
A mediator will ask each party what they want with the lemon. One party saysthey want the pulp for lemonade. The other wants to use the rind for zest. Themediator sees a solution the judge missed: peel the lemon and give all of the fruitto one party and all the rind to the other. A win-win solution.
Special needs children benefit greatly from principled negotiations. When partiesknow what their needs are, they can be more creative in finding solutions tothose needs.
Often, parties simply assess their needs in private, and make unilateral decisionsas to what they require to satisfy those needs. They then present only theseconclusions as their positions in a negotiation: "I need the lemon." Poker rules dictate that you will "tip your hand" and foul up your chances ofwinning if your opponents know what your plans are. Keep your cards close toyour chest, and bluff it out. In negotiations, especially delicate negotiations, thegoal should not be to win (which forces the other side to lose) but to achieve aparticular objective.
Encourage brainstorming among all informed people at team meetings,especially before an IEP. When the collective resources of a group focus on aproblem, the solutions that present themselves are amazing.
Have more than one approach to offer. If your initial suggestions cannot beimplemented, you should have given some thought to your fallback position.
Sometimes a fallback plan contains a calculated failure. Failures, thoughunpleasant, are our greatest teachers. If you find yourself at odds with a schooladministrator's idea, and if this idea will not cause real harm to your child, set atrial period, then let the idea go forward and fail. Just let experience speak foritself.
No one likes to feel like a loser. No one likes to feel humiliated. No one likes tofeel stupid, or to worry that if she makes a mistake, this will be held up foreveryone to see. No one wants to worry over failing in front of a group. Moreover,everyone will fight tooth and nail to keep these things from happening.
I promise you, if an IEP becomes a contest of who is right and who is wrong, noone will roll over and play dead. Present a position (even a perfectly legal andlegitimate one) in unnecessarily demanding terms, and you risk creating anatmosphere where the other side would rather eat steel wool than admit that theyare wrong (and they certainly won't capitulate if their opponent is not wholly righton the facts in the first place!)! I am amazed at the number of parents who walk into a meeting and flatly accuseschool personnel of professional incompetence - in front of their supervisors -then expect everyone to agree with them! Sure, wouldn't you, if someone did that to you at your job? What if you are right? What if school personnel are flatly incompetent? Do notsay it. Show it! Be reasonable and calm while you admit that you are concerned about how asituation is developing. Be prepared to show, objectively, how your child is notmeeting his goals. Produce reports, articles or test results that will persuade anobjective listener (like a due process hearing officer, or a judge) why yoursuggestions are reasonable.
If you can lay out a "court ready" case at this level, everyone will quickly read thehandwriting on the wall. Threats and accusations are unnecessary. The factsspeak for themselves. Of course, this assumes that you have some facts on yourside.
Do not shy away from the damning evidence. Develop a strategy to deal with it. Agood lawyer knows all the strengths and weaknesses of her case. We knowwhere we expect to have trouble and prepare for this as best as we can. Again,objective data from non-school district personnel is the best place to start.
Independent medical, developmental and psychologist's evaluations and privatetherapists' reports and evaluations are crucial to setting up the facts. So are thirdparty advocates or therapists who come to the school and observe your child inhis school environment. You have to listen to what these reports and third partiestell you.
Parents must be willing to face the reality of their child's abilities! If your child has tantrums when frustrated, do not demand that his day befrustration-free. Provide and document solutions how the frustrations andtantrums should be handled.
You are not being disloyal to your child by admitting his problem areas. You arebeing disloyal to your child if you do not prepare for them. Get the facts in writing.
Do not rely on your own opinions and feelings.
This is not to say that parental opinions and feelings are bad. In fact, they arewonderful! In addition to what we may think or feel in our guts, we need tounderstand of what we can reasonably expect for our child in the classroomenvironment in a given timeframe.
Our best hopes and dreams come true one step at a time. Parental feelings arethe most powerful thing on earth. Our insights are invaluable in setting goals,therapies, and just getting things done. They are not evidence! We will fall flat on our faces if we indulge in the belief that our opinions, bythemselves, will persuade an objective hearing officer or judge that we are rightin any contested issue. Courts sympathize with parents but do not defer toparents.
As parents, we are expected to be many things for our children but "objective" isnot one of these things. We are, by Nature's design, the least objective persons in the room. Cull and collect objective evidence to buttress any argument youhave. If you get caught off-guard on an issue in an IEP and believe you needwritten back-up for your position, adjourn the meeting and reconvene when youhave a chance to have your child assessed by a qualified professional. IDEAdoes not require the parents to be rushed into anything.
5. Walk a mile in the other side's moccasins.
It will not hurt to indulge your thoughts about how things are for the other side. Infact, experimenting with perspective is necessary to brainstorm solutions or todecide the order in which you will play your cards.
Spend sustained time at the school. Volunteer in your child's classroom andother classrooms. Watch the kids on the playground and in the lunchroom. Whatreally goes on inside school? How tired are you at the end of a school day? Howtired must the teachers, the aid, the principal, and your child be? On the other side, encourage teachers and other school persons to visit you athome in different circumstances, so they know what your life is like, too.
Do not forget to sell your solutions. When we want interventions for our childrenthat are designed to maximize potential, do not forget that IDEA will not supportus. Find a way to make your proposal appealing for the school district.
When Amanda was in Early Childhood, the teacher (a wonderful woman) usedher tried and true methods for disciplining Amanda. While these methods maywork well with other kids, they were not appropriate for Amanda. Instead ofobjecting to this procedure, we offered a suggestion that we said would makethings easier for the teacher. Framing our suggestions this way made it easier toimplement.
Well-reasoned but abstract ideas about how things should be have littleapplication unless you can offer practical advice about how they can be. It is notenough to know how you think things should be done, although this is anexcellent place to start. To make workable suggestions, you need to understandhow the people involved can do this job within the context of their day, trainingand budget.
Learn what they have to do and how they do it. Use that knowledge to advocate.
Offer practical ideas about how to address problem areas.
It is harder to ignore the problem-finder if he or she is also the solution-giver.
Conversely, it is easy to ignore people who do not know what they are talkingabout. Parents of special needs kids know this better than anyone else. We areconstantly told how to do things by people who have no idea about the realities ofliving with our children. We rightfully ignore those people. School personnel willignore you unless you understand the realities of what they do.
6. Listen actively, especially to the things you do not want to hear.
No one is all knowing. Really. As much as I know about my child, and I know anawful lot about her, I still have things to learn. To my knowledge, no one has yetdescended from the sky.
Often the solutions we seek are stranded on the barren land of "What We Do NotWant to Hear", and are calling out to us.
Hear them. Listen to everything with a whole heart and a whole head. If you findyourself getting angry or defensive because you disagree with what someone istelling you, or because the person is talking to you in an offensive way, payattention to your reaction. When we feel defensive, we stop listening. We beginto think about a rebuttal. Our thoughts are no longer on the issue, but how we willrespond to it.
If you find your temperature rising, disengage your ego from what is happening.
Breathe deep. Calmly restate what you heard like this: "I want to understand yourposition, Ms. Jones. Are you saying _____________?" Then restate what youthought she said, not what you thought she meant.
She will confirm or deny your recollection. Keep at this until you are sure youunderstand her position. Only then can you calmly state your position. Often,what we think we hear, we did not hear. Or the other party innocently misspoke.
These oversights can be remedied easily. If not, then everyone at the table fullyunderstands what the disagreement is about, and can try to deal with it. Inaddition, hearing all points repeatedly allows even the most uncomfortable ofthem to sink in enough to be objectively evaluated.
7. Encourage everyone to love your child, and then let them! Pediatricians and child psychologists have a term of art called "gate-keeping".
Gate keeping occurs when people set themselves up like watchdogs over a child,guarding the gate against intruders. Sometimes nurses and doctors will gate- keep a particularly sick child. They become convinced that they are the only oneswho can really act in the child's best interest and actively discourage others fromhelping.
However, no one can gate-keep over a sick or disabled child the way parentscan. We are stunning in this ability. Nature has blessed us with innumerableinstincts for just this task. When is gate-keeping appropriate? When it protectsyour child from a real harm. When is it not appropriate? When it gets in the wayof loving or talented people who can help.
Parents must strive to maintain their sense of judgment. They must be able to tellthe difference between real harm and potential or imagined harm. If we treatevery person who disagrees with us as an enemy, we will dull our instincts so wewill not be able to detect the real enemies in our presence.
A school speech therapist told the mother of a nonverbal autistic boy that therewas no hope for him because she could not reach him. She told the boy'smother: "You know, these autistic kids just don't get it!" This statementdemonstrated her dangerous ignorance about autism. She may as well havesaid, "You know those deaf kids? You talk to them, but they don't hear you!" Thiswoman was a real threat to that boy. She would not help him. In fact, she causedhim to regress. Gate keeping was a wonderful skill for his mother as she stroveto get another therapist for her son.
However, if a knowledgeable educator has a different approach or opinion fromours, this does not make her the enemy. Do not gate-keep around those people -they are invaluable, untapped resources.
Let them close to your child to see the wonders and beauty you do. When theylearn to love your child from their heart, they will be motivated to do what theycan to help and will listen to what you have to say. If you push them away, theywill never get a chance to find out what they and your child are capable of doing.
Everyone loses that way.
I am convinced that children can never be loved too much or by too manypeople. Love will move mountains. Let it in.
As a lawyer, I have remarkable faith in the human spirit. I believe that mostpeople are good at heart and will do their best if they are given an opportunity.
In the field of education, it makes sense to be optimistic. Think about it: No onebecomes a teacher, an aid, an administrator or a facilitator because of themoney, the hours or the Nike endorsements. They do this because they want tomake a difference to children.
Of course, intelligent people will disagree about the proper way to make thatdifference. Those persons closest to the children will have a different perspectivethan administrators.
Very few, if any, of the people you will meet in your child's school is out to hurtanyone. Be alert for the occasional bad apple. Generally, give your child's teamsome credit for acting in good faith. If they need education, supply it. If youdisagree, try to work it out without getting personal. Do not demonize well-intentioned people. Utilize them. Even if they have priorities that you cannotshare, they can turn out to be of great help to your child.
Your child's IEP should never be a gamble. IEP meetings should not turn into agame of nerves with everyone trying to guess who is bluffing, betting or foldingon the strength of their guess. An IEP should be a strategic meeting where atalented advocate need not lie about his or her hand, but can play any facts tothe child's advantage.
Keep the game fair and in good spirits, when possible. Know what your goals areand work them. Many roads lead to the same place. Many different cards can winthe game.
About Jennifer BolleroJennifer Bollero is an attorney in private practice in St. Charles, Illinois where shelives with her husband, Mike and two children, Amanda (who has autism) and Ben(who is not disabled). Her practice focuses on the needs of families with specialneeds children, especially those who need help securing appropriate educationalinterventions for those children. Her experience includes commercial litigation andtrial experience, mediation, arbitration and some general practice.
Ms. Bollero graduated with a Bachelor of Arts from Northwestern University in1985 and her Juris Doctor from Loyola University of Chicago Law School of Law in1988. She has been admitted to the State Bar of Illinois and the Federal Bar for the Northern District of Illinois since 1988. She externed for the Hon. JudgeAspen and for the American Civil Liberties Union.
Ms. Bollero is on the board of directors for two nonprofit organizations: the Kane-Kendall Services Coordinators (a point of entry organization for all persons withdevelopmental disabilities in Kane and Kendall Counties in Illinois) and the AutismSociety of Illinois. She is firmly committed to respecting the unique qualities of alldisabled children, while encouraging all who raise and teach them to give them everyopportunity to secure the skills and knowledge they will need in life.
Contact Information:Jennifer L. Bollero1011 S. Third St.
St. Charles, IL [email protected]: (630) 584-3550Fax: (630) 584-3330 2006 ASPEN® is a 501(C)3 Corporation and a NJ Department of Education Professional Development Provider (Registration #1619)

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