Wednesday, November 21, 2012

Advocating for a Child with Behaviors

Warning - this is a long one.  I go into details so that you can learn from my mistakes.  My husband and I have fostered and adopted kids for the last 12 years.  Our final foster child became our son officially almost five years ago but he melted our hearts just prior to his two month birthday when we brought him home from the hospital after several surgeries, more shocks to his heart than any child should have to endure, and with the love of a ton of nurses who really nursed him into health.

This little guy was born to his biological mother at her home.  She proceeded to drop him on his head, cut his umbilical cord and not clamp it off, stab him 40 times in the trunk with a pair of scissors, and then wrap him in a wet towel and leave him under an open window shortly after Christmas.  For some reason, before he was completely dead she called 9-1-1 and they came and took him to the hospital where doctors administered extraordinary medical interventions and saved his life.  He has scars all over his still small body.  His lungs both collapsed, his pericardium was cut, but luckily not his heart, there was liver damage that was life threatening, he lost so much blood that there was lack of oxygen to his brain which in turn caused seizures.  I really don't remember all that my little love went through in those first moments of life, but it was hell.  He wasn't expected to live, and once it seemed he would live he wasn't expected to do much.  The doctors didn't expect him to sit up, stand, walk, eat, speak, or be able to care for even the most basic of his own needs - ever.

Our little guy doesn't do what anyone expect him to do though!  He has above average intelligence according to the testing we have had done, he not only walks, he runs and climbs and rides his bike without training wheels.  He can swing at a ball and hit it and he can do some amazing jumps on a trampoline.  He is on track for all of his academic milestones.

There is one area that is difficult for him though.  Speech and language.  He actually speaks pretty well, his articulation is very good most of the time and he can put together a sentence that seems quite appropriate for a child in kindergarten.  He has trouble taking in what he hears though.  He likely has a condition called Auditory Processing Disorder or Central A.P.D.  In our state it can't be technically diagnosed until a child is 7, so we are left knowing he has this trouble, but not being able to get a diagnosis and get him some of the help he needs because he hasn't turned seven yet.  Kind of a ridiculous rule, law, whatever it is, but hey it's what we have to deal with.  Pretty much what happens is he doesn't hear things exactly like they were said - I might say tangerine and he might her magazine.  He also has trouble with some concepts.  Mostly these are positional concepts like over, under, between, behind, first, last.  He also has trouble answering "wh" questions, and the toughest of them naturally is "where".  These difficulties are amplified in the classroom - lots of other noise, constant change/transitions, and a bunch of kids who don't understand that he has this difficulty.

Kindergarten classes in our district have 30 kids this year.  Last year it was 20 kindergartners, this year it is 30.  We worked hard to get him into the local charter school, thinking their multiple intelligences style of teaching would benefit our little guy.  The charter school doesn't have all of the overhead of the large district, but since the district was putting 30 kindergartners in each class, they had no need to place fewer children in the kindergarten classes.  Additionally, this made more parents happy since they could put more of their children into the charters classes.  Many of us enrolled our kids in their hybrid Independent Study program which includes going to class on campus three days per week and home-schooling two days per week.  My little guy was 6th on the waiting list so we could feel very secure in the knowledge that he would be in a five day a week class in first grade and then he could spend the rest of his academic days at charter school until he completed eighth grade.  And by then it was expected that the charter might even have a High School.

Because charter schools are actually public schools they must take children with IEP's.  This particular school doesn't take students with more severe special needs, kids who need a special day class, but they do take kids who can learn in the typical environment.  this seemed like a perfect opportunity for my son.  He had been in a special ed preschool class where he had a few behavior issues, but not more than you would expect from any preschooler, three incidents in two years of preschool.  His speech had come along - when he first entered the program he spoke only 10 words, and what little he did say was difficult to understand.  After two years in preschool with speech therapy (albeit not the best speech therapy - it was the district/county program after all) and over a year of private pay speech therapy he was able to speak clearly most of the time (anxiety has effected his speech and it gets unclear at times) and he spoke in full sentences.    He seemed pretty much like any other kiddo but we knew he did need some extra help, therapy and some modifications and accommodations to benefit from his education.

We went to meetings, we got him his uniforms, we got him to school with his homework done, but after about four or five weeks we started hearing that he was behaving inappropriately in class.  He was pinching some of the other children and even spitting at them.  This was shocking, he hadn't done it before.  We were told that this wasn't all that unusual given the severity of his speech and language deficits.

We worked in an IEP meeting to prepare a behavior support plan with school staff.  He would be given positive reinforcements every half hour until he could do well with that, then the supports would move to an hour, then two times per day, then once a day, until his behaviors were acceptable.  The teacher would give him small rewards, like passing out the pencils, high fives, and being the first to do an activity.  I gave her stickers that were motivating for my son - Cars 2 stickers, and we would use a variety of rewards for bringing home good behavior reports , including milk shakes, toy cars, and DVD's.  Each of these was predicated on increasing his positive behavior reports.  the teacher had already been doing the behavior charts, but we were meeting and making it formal at an IEP meeting.

Initially I got no reports.  It was so odd, because I had been getting reports prior to the meeting and once it was part of the IEP I got nothing.  It took a few days to find out what was going on, but I was told the teacher thought that someone was making up a new behavior chart.  Why she thought this was a mystery as her chart was fine.  There had been no negative comments, no one said a new chart was needed, but what was even more unbelievable was that she felt using nothing was the strategy to use after having a meeting to discuss how vital my son's need was for support in this area.

Finally after two weeks of nothing the behavior charts were again instituted with the additional supports that were put together by the RSP teacher and the SLP.  It was working!  This was so great!  My son's behaviors were down to no more than one per day.  BUT, we had forgotten one important piece, no one had asked what happened just before my son behaved inappropriately.  We all fell lock-step into the idea that he misbehaved because of his speech issues.  I've read up on CAPD and I was ready to believe this, kids with CAPD often times have difficult behaviors as a result of not understanding fully what others want from them.  Okay, so we believed it, but apparently no one in the classroom was at all interested in what was going on that made my little guy so angry.

Shortly after we returned from the Christmas break I observed a situation in which another child was taunting my son.  This was at an award's ceremony and every child but my son got the trifecta of awards.  Perfect Attendance, Perfect Homework, and Excellent Behavior.  Really, every other child in the class was perfect?  Now, I don't think my son was perfect, but every other child was perfect?  I don't think so.  I have never seen such a situation.  I think there is something wrong with a teacher who can't see that only one child isn't perfect - it was bizarre.

After the kids got their awards one child was trying to take away my son's award. I watched as my son refused to give the child his award, apparently he had figured out the other child was planning to throw his award.  I walked away after that, thinking he was handling this so well.  I needed to check in with another mother and he was doing great.  Well, a few minutes later the teacher approached me and told me that my son had convinced another child to give him his award (a pin that was to go on the child's sweater) and he had thrown it.  She told me "It's too bad he had to ruin the whole day".  Really, he ruined the whole day?  What he did sucked and wasn't okay, but had he really ruined the whole day?  The pin was located and returned to the other child, my son apologized, and the "whole day" was "ruined".

Later that day I asked my son if there was anyone at school who was mean to him.  He immediately named the child who was trying to take his pin.  He said "______ is mean to me every day, every day."  Apparently no one had bothered to ask him what had happened, and even if they had he would have had trouble explaining his side, and even if he had the teacher had determined that he was the trouble and all the other students were perfect, never having teased or taunting my son, so there was no reason for him to share what had happened, he'd already been judged and found guilty.      



An IEE is the basis for getting your child needed services through the school district.  The district does their evaluations and may find your child needs special education (or not) but then they do little to nothing to help your child actually learn and gain from their time in school.  Most children in special education have a specific need or needs that keeps them from learning in the general education classroom.  It is services that allow them to learn.  If your child has difficulty reading, then they need intensive instruction in reading.  If they have speech issues then they need speech therapy.  If your child cannot write well and has fine motor issues then occupational therapy is called for, or the OT may also help with sensory issues.  There are more servies than I will enumerate here, but the key to getting any kind of help for your child is often in the IEE.

WHAT:  IEE = Independent Educational Evaluation - should be done at public expense, the district can set up a contract with the expert so that you do not have to pay out of pocket, they will likely drag their feet though, so it might go faster if you can pay up front and have the district reimburse you, but, don't do that until you have an agreement in writing that they will reimburse you for the cost.  Districts often set limits on who they will reimburse, some of those limits are reasonable, others are not.  They cannot speicifically deny an IEE due to cost, though if your expert costs 5 times the prevailing rate they will usually not reimburse you for that IEE.  I have found the popular way to avoid the use of experts that do a good job of advocating for our kids in this areas is to set a mileage limitation on the experts one may use.  There are two ways to fight this.  1) they cannot set limits that they do not follow themselves AND 2) You may have a good reason for using these particular people for your child and you can argue why you need to use these particular experts.  All of our best experts are about 5-10 miles outside of the mileage limitations, but I have been able to use them so far by arguing that they do not adhere to their own limits, so I should not have to either.  Below is a letter I have used to make my point with the district.

As we are aware, all of these experts are outside of the mileage limitations as prescribed by the WESELPA, but that the WESELPA limitations are outside of the limits prescribed by OSEP.  See the letter copied into this e-mail below.  Because the district uses experts from outside the area set by the WESELPA, it can not set those limits for parents.  As I shared with you in an earlier conversation, Ms. Abby Rozenberg, who was offered as a provider of an IEE for another of my children, just over two months ago, is further away than these providers, so the distance criteria is not appropriate as per OSEP. The WESELPA mileage limitations are not in accordance with OSEP policy.

Thank you for your prompt attention to this matter.  Please see the letter below, and if there is any question as to the authenticity of this being in the Dept. of Education database I am including the link to this page on their site.  The letter I refer to is the third letter down from the top on that site.  I am also including contact information for all of the experts listed, below the OSEP letter in order to make setting up contracts quite easy. 

Linda K Higgins

Dated February 20, 2004

Alice D. Parker, Ed.D.
Assistant Superintendent
California Department of Education
721 Capitol Mall
Sacramento, California 94244

Dear Dr. Parker:

This is a response to your letter to Larry Ringer, Associate Division Director, Monitoring and State Improvement Planning, requesting guidance from the Office of Special Education Programs (OSEP) regarding an independent educational evaluation (IEE) under 34 CFR §300.502 of the regulations implementing the Individuals with Disabilities Education Act (IDEA).  Specifically, you ask whether it is permissible for a public agency to restrict a parent’s choice of an IEE to only the evaluators on a list provided the parent by the public agency and whether the public agency has the ultimate authority to choose the evaluator.

The current IDEA regulations specify that the right of a parent to obtain an IEE is triggered if the parent disagrees with an evaluation initiated by a public agency.  See §300.502(b)(1).  The regulations also require that on request for an IEE, a public agency must provide the parent information about where an IEE may be obtained, and the agency criteria applicable for IEEs. 34 CFR §§300.502(a)(2) and (e)(1).  The public agency must set criteria under which an IEE can be obtained at public expense, including the location of the evaluation and the qualifications of the examiner, which must be the same as the criteria the public agency uses when it initiates an evaluation, to the extent those criteria are consistent with the parent’s right to an IEE.  34 CFR §300.502(e)(1).  Other than establishing these criteria, a public agency may not impose conditions or timelines related to a parent obtaining an IEE at public expense.  See §300.502(e)(2).

It is not inconsistent with IDEA for a district to publish a list of the names and addresses of evaluators that meet agency criteria, including reasonable cost criteria.  This can be an effective way for agencies to inform parents of how and where they may obtain an IEE.  In order to ensure the parent’s right to an independent evaluation, it is the parent, not the district, who has the right to choose which evaluator on the list will conduct the IEE.  We recognize that it is difficult, particularly in a big district, to establish a list that includes every qualified evaluator who meets the agency’s criteria.  Therefore, when enforcing IEE criteria, the district must allow parents the opportunity to select an evaluator who is not on the list but who meets the criteria set by the public agency.  

In addition, when enforcing IEE criteria, the district must allow parents the opportunity to demonstrate that unique circumstances justify the selection of an evaluator that does not meet agency criteria.  In some instances, the only person qualified to conduct the type of evaluation needed by the child may be an evaluator who does not meet agency criteria.  For example, because children must be assessed in all areas related to the suspected disability, there may be situations in which some children may need evaluations by an evaluator who does not meet agency criteria.  In such situations, the public agency must ensure that the parent still has the right to the IEE at public expense and is informed about where the evaluation(s) may be obtained.  

Section 300.502(b)(2) of the regulations states that “If a parent requests an independent educational evaluation at public expense, the public agency must, without unnecessary delay, either (i) initiate a hearing under §300.507 to show that its evaluation is appropriate; or (ii) ensure that an independent educational evaluation is provided at public expense, unless the agency demonstrates in a hearing under §300.507 that the evaluation obtained by the parent did not meet agency criteria.”  Therefore, if a parent elects to obtain an IEE by an evaluator not on the public agency’s list of evaluators, the public agency may initiate a due process hearing to demonstrate that the evaluation obtained by the parent did not meet the public agency criteria applicable for IEEs or there is no justification for selecting an evaluator that does not meet agency criteria.  If the public agency chooses not to initiate a due process hearing, it must ensure that the parent is reimbursed for the evaluation.

At your request, we have reviewed the guidance provided by the California Department of Education (CDE).  We recommend that CDE add to the guidance after the first sentence that (1) the parent, not the district, has the right to choose which evaluator on the list will conduct the IEE; and (2) when enforcing IEE criteria, the district must allow parents the opportunity to select a qualified evaluator that meets agency criteria even if that evaluator is not on the list of potential evaluators established by the district.  In addition, the district must allow parents the opportunity to demonstrate that unique circumstances justify the selection of an evaluator that does not meet agency criteria.  We recommend revising the second sentence as follows:  if a parent elects to obtain an IEE by an evaluator not on the public agency’s list of evaluators, and the public agency believes the evaluator does not meet agency criteria or there is no justification for selecting an evaluator that does not meet agency criteria, the district may file for due process rather than pay for the IEE. 

We hope that you find this explanation helpful.  If you need further assistance, please call Dale King at (202) 260-1156.


/s/ Patricia J. Guard for 


WHY: You disagree with the evaluation done by the district.  You can disagree with all or part of their evaluation.  Often times I find that the findings may be adequate, but that the receommendations are seriously lacking.  If you are asked what you disagree with it is generally safe to tell them that you are not comfortable with the recommendations made or the lack of recommendations as many districts do not allow the evaluators to make recommendations on their reports, thus keeping them from making recommendtion that the district would not like to pay for.  SOmetimes a distric tevaluation may not include all aspects of the area they should assess.  Our district repeatedly avoided valuating in the sensory realm, a huge area for my daughter, if the district does not evvaute in all areas of suspected disability then you deserve an IEE.

WHEN: When you disagree with the school district's evaluation in any one or several areas. Generally you might ask for an IEE in Psychoeducation, Speech, Occupational Therapy, Augmentative Communication, Assistive technology, Vision, Physical therapy, or any other area that the district may have assessed. The general rule of thumb is that the district should have performed the evaluation within about a year.

WHO: An expert in the particular field who has experience writing up reports that the district takes seriously. The evaluations they write up need to include an explanation of the tests they did, their conclusions, why they believe your child needs whatever they recommend, and goals for the district to implement.  A great IEE is one that lays out exactly why the child needs the services receommended so that the district is not as likely to go to due process to fight the need for more services, you want to win in the initial phase rather than ending up in court. It is usually not effective to use people employed at hospitals as they are experts at writing up an evaluation for funding from insurance companies for medical need, not for writing up educational need. They may be great at writing up reports but you want an expert who understands the educational system.

HOW: Get the names of great evaluators in your area from attorneys, advocates, and other parents who have been successful in getting their child's needs met. Don't use the people sugggested by the district. In most cases these people will not do an adequate job, they will often write a very poor report that does not justify any increased services and that is why the district recommends them.