I have the extreme pleasure of posting an interview I recently had with Kathy Willis. Kathy is an advocate for children with special needs and disabilities in the state of Delaware. She has attended several Individualized Education Plan (IEP) meetings to support parents in helping to get the accommodations their children need in IEP and 504 plans. I met Kathy last month through Kilroys, and I believe she is a great person in our state to help our children. Kathy’s story is below, and she has gone through several of the same struggles many parents have in Delaware. But she turned dark times into something positive that has been truly beneficial for parents. I don’t know if the DOE and the state government realizes how many of us are out there, trying to champion this cause. It can be as an advocate, or a blogger, or as a parent attending a support group. Without further ado, please meet Kathy Willis!
I understand you have children with disabilities. Did you have any struggles with any schools in Delaware?
I have two children with disabilities. My son has Asperger’s Syndrome, Sensory Processing Disorder, ADD, severe casein intolerance (casein is a protein in milk), expressive language delay, and medical issues. Also, to make it even more complicated he is twice exceptional, which means he is gifted with a learning disability. My daughter has mild to moderate dyslexia, and has an average to above average IQ.
We have had problems with both of their schools.
My story started with my son. We always knew he became extremely stressed during the school year. He was never a behavior problem, but he hated school to the point it made him physically sick. We home schooled off and on most of his life because of his severe anxiety. In 9th grade, he went to a charter school, and he was so incredibly stressed that he would literally rip his fingernails off to the point he would bleed. He would spend hours upon hours doing his homework, and he would literally hit his head and say “I am just so stupid.”
We actually wanted to bring him back home. He was happy and content when we homeschooled him. He was incredibly bright and easy to home school. However, he decided he wanted to stick it out at this charter school. We supported him in this decision, but we grew more and more concerned as his anxiety increased. In November of 9th grade, he had a serious medical issue with rapidly developing pectus carinatum. He had numerous doctor visits, including a trip to the New York area for a brace fitting several times.
I had been in touch with the school’s Educational Diagnostician (ED) after a teacher referred her to me. She seemed nice, and at the time I actually trusted her. I actually updated her on my son’s medical condition during our visits to see specialists as far as California, and thought of her as a friend at the time. I had asked several times to have him evaluated, and that I knew something was wrong. I grew frustrated, as she seemed to ignore my requests for months. I began to study Delaware special education laws and Wrightslaw (link to http://www.wrightslaw.com/)
I finally put my request for an evaluation in writing, and she finally did a very basic and completely lacking evaluation. In the end, he basically scored 4 years ahead in most areas except written expression. (I guess I did a good job with homeschooling!) Due to his disability, he was on a kindergarten level in written expression. I didn’t know much about what this meant at the time, but when the ED suggested he sit with her to learn basic grammar at lunchtime, I knew something was not right. He had scored four years ahead in basic grammar, sentence structure, and spelling so how would learning basic grammar help him? It just didn’t make sense. At first, I politely said that I did not agree, and paid for an occupational therapy (OT) evaluation independently. We learned he had many deficits, and we paid over $6000.00 in OT to help him. The school later hired an OT of their own to write a report on our OT’s evaluation, which of course she disagreed with. The ridiculous part was that she had never met my son, nor had she ever evaluated him. I personally think she should lose her OT license.
The story grew from here as my son’s struggles increased. We started noticing that he was getting all A’s and B’s, but he was not completing assignments because he was unable to do it. His nature is to please, and despite hours of trying he couldn’t express himself in writing. He could answer a multiple choice with almost 100% accuracy, but he could not write about the same information. Assignments that were supposed to be five paragraphs long, he would only write two sentences and get an A+. I really grew concerned because he was still so stressed and he knew he wasn’t able to do the assignments, and a teacher told me that I needed to be concerned because he would never make it in college.
I began to request that he have some help with his writing. I was so naive at first that I just asked for a few minutes each week. I was repeatedly denied. We finally hired an advocate, and she was appalled at the behavior at an IEP meeting. The ED denied saying he needed instruction in basic grammar despite it being written in the actual evaluation as a recommendation. She accused me of only wanting a 504 plan, and that I refused an IEP despite literally 100s of emails begging for help. I even told her that I didn’t understand the difference in an IEP or a 504 plan.
We had an Independent Education Evaluation (IEE) completed that stated he needed an IEP for a learning disability in written expression. However, the IEE also stated that his grades were good so it was questionable how much he needed. We later found out that the teachers had lied and provided false information to the evaluator. I am so thankful for the Home Access Center, and we were able to print out his actual grades. I found that at one point he was missing 13 out of 23 assignments, but still had an A+ in his English class. I saved every assignment and grade, and found that he was only writing the two sentences for five paragraph essays. He was graded A+ for those papers. It was unreal what they were doing to keep from helping him.
There were so many dirty things done to make it look like he was faking his disability and/or to cover it up. We fought literally for three years until I was so fed up, and I literally almost memorized state and federal education laws. At the time, it was really hard to find a lawyer in Delaware for special education. I finally filed a state complaint, and the response was outrageous. If you were to read the state DOE response online, you would think that they were right not to rule in our favor. However, the report is nowhere near accurate.
After he was finally given a (ridiculously poor) 504 plan, he was to have OT for written expression weekly. Unfortunately, he did not receive one session for months. I finally filed an Office of Civil Rights complaint regarding the lack of services, ignoring their own and the school’s evaluation, falsifying records, etc. If you do any reading on OCR complaints, you will find that they rarely find in favor of the child. We won hands down, and the school was required to sign a contract with OCR. The 4 page contract required the charter school to obtain training on IEPs/504 plans, compensatory education for my son, and many other things. OCR, which is a federal entity, was serious and made several follow ups.
During the investigation by OCR, which took several months, we again tried to get an IEP for our son. The school finally hired a speech therapist to evaluate him, and even despite her recommendation for an IEP, the ED (who governed the IEP team) refused to do so. The straw that broke the camel’s back was when my son did extremely well on the DSTP, and the ED said “see he doesn’t need an IEP.” When we got home, we asked our son about the DSTP, and that we were proud of him but puzzled on how he did so well. He said, “What???? Who wrote what???” He told me that a special education teacher took him to his office, asked him a few questions, but he could not see what he was writing.
There is nothing wrong with my son’s hands, and no one should have been writing anything for him. We called the state DOE, made an appointment to take him to look at the actual test, and after reading it, he said “I did not say these things.” There were no accommodations to use a scribe, and the state was not even informed that he had one for the test. To be clear, even if a scribe is necessary, they are only to write word for word what the student says. They cannot even add punctuation without the child saying to do so. Of course, we were completely fed up.
The DOE initiated an investigation, which we followed up with a written request for one. The state DOE interviewed everyone involved including our son in our presence. The final report was that the teacher had cheated, and guess what, he did not lose his job. We were told that it was a personnel issue, and none of our business. We do not know why to this day that we did not go to the News Journal.
By the way, my son became so ill from stress that he was on homebound from December 2008 until late September 2009. The ED was still arrogant, and our fight went on for several more months. We filed for a due process hearing, and won in a resolution meeting with a settlement. My son’s senior year was his best year in his entire schooling, and with special education his writing grew from a kindergarten level to a 6th grade level. We used compensatory education to get him individual help, and he is doing well in college. We also got a true IEE, and we learned even more about his needs and disabilities. There were so many dirty things done at that charter school, but it would take me days to tell them all.
What prompted you to become an advocate?
I hate to see a child suffer. I hate it when an adult knows a child needs help, and continues to berate them for their disability. It took me a long time to learn what I know, and how to be smarter than the school so that the child can get the help they need. I believe that by helping another family through this horrible maze, it makes my son’s difficulties seem (a little) worth it. I have helped children all over the state (including PA & NJ) in numerous school districts and in all three counties in Delaware. It brings great joy and healing to see another child helped.
How does advocacy work? Do you need a license?
You do not need a license. You do need to know special education laws, but you have to be careful not to practice the law.
What are some of the most common problems you come across?
Parents don’t understand that they must put their request in writing if they want their child evaluated. They do not know how to read the school’s evaluation, they do not know their procedural safeguard. They don’t know it’s imperative to record all IEP meetings because they trust the IEP team. Children are given accommodations to help the teachers not the child. IEPs are written poorly. The child does not progress and parents don’t know how to monitor progress. Children are denied IEPs. Children’s disabilities are sometimes accommodated but rarely remediated, etc. etc.
It sounds like there are many situations where a child is denied an IEP based on intelligence. Would you find that to be accurate?
Absolutely. It isn’t always an easy task. In my son’s case, he was technically gifted so how could he need an IEP according to the school. This is old school thinking, and it clearly has no place in IDEA.
What is a due process hearing like? A mediation?
Mediation is supposed to be less confrontational with less people than a full IEP team. Also, you request Mediation without filing for Due Process. During Mediation, there is generally a mediator from the University of Delaware that leads the meeting. Any decisions made in mediation are legally binding, but the discussions held in Mediation are not.
Also, I would never agree to mediation AFTER filing for a due process hearing especially if you have hired a lawyer. If the issues are settled in Mediation, you cannot usually get lawyer fees. Generally after filing for due process, the school should offer a resolution meeting. If the issues are settled there, you can ask for legal fees to be paid. I have not had to go to a full due process in Delaware. The two cases I filed were one for my son and one for my daughter and both settled in Resolution. I have had many parents file for due process in Delaware, but all have been extremely strong cases so the school settled in Resolution. The cases settled in Resolution do not get recorded so you will never hear how often this occurs. I have had parents go through and win due process in Pennsylvania. I will say that it is extremely stressful, takes hours and hours of preparation, and you really, really need a lawyer.
Everyone talks about IEPs, but a lot of people don’t know about 504 plans. Have you ever advocated for someone on a 504 plan?
I have advocated for children with 504 plans. It is rare that I think a 504 plan is sufficient. If the child has medical conditions that affect his education, but has no educational or behavioral needs, then and only then might a 504 plan be sufficient.
Many people in Delaware believe charter schools have the most special education issues. Do you believe charter schools have more problems with special education than regular public schools?
Yes, but regular public schools can be just as bad. The cost is high to educate a child with a disability, but they deserve a Free Appropriate Education (FAPE). I have found that those leading and working in charter schools have very little knowledge about special education laws. However, make no mistake that a child with a disability has the same protections and rights as any child does in any other public school.
What do you think of special education in Delaware?
Honestly, we do a pretty good job with early childhood (before entrance into the school system) interventions. However, we absolutely stink once a child gets older.
Do you think schools in Delaware are accurately performing their Child Find duties?
They do a pretty good job with early childhood Child Find, but once a child is in elementary school the identification goes down. They are required to assess in all areas of suspected disability, and you will mainly find the status quo evaluation only has an IQ test and a basic achievement test. Tests only measure what they are designed to do. For example, the most common intelligence test is the WISC, which is based mostly on language. If a child has an expressive language disorder, you could get a very false low score. I have found this to be true on many occasions. It is terrible to be told your child has a low IQ, when in fact they may not. As another example, dyslexia is rarely picked up by these standard achievement tests. There are many, many tests that are rarely used by schools that should be.
What do you think of the report that came out this week regarding Delaware needing Federal intervention for special education?
It’s about time!!
How do you feel about standarized testing and Common Core in Delaware? Do you think all parents of special needs children should have the option of opting out of standardized testing?
Common Core: I can only imagine the number of children struggling with it. I am sure we will never know. As far as standardized testing, well I am on the fence about that one. It can alert parents that a child has a disability and it can also help monitor their progress. I do believe parents should have the choice, but I fear parents will make uneducated choices. If you want your child to succeed in college, they will have to take tests.
What is the one thing you could do over if you had the chance?
I wish that I had learned how to help my son a lot sooner than I did. However, let me be clear, it is never the parent’s responsibility. According to case law and the IDEA, the child find responsibility is 100% on the schools. I still wish I could have helped my kids a lot sooner. I would also have filed my OCR complaint and my due process complaint a whole lot sooner than we did. We wanted them to just do the right thing and help our son. We didn’t want the fight, but we certainly were not going to give up. There are many days I wish I had gone to the News Journal, but our intent was to help our son, not ruin the school. We had a horrible IEP team, but we still believed in the school. There were some good things about the school.
If you hadn’t intervened with the school, where do you think your children would be now?
There is no doubt in my mind that neither of my children would be doing as well as they are in college. I believe they are both on their way to independence. I sincerely doubt my son or my daughter would have ever made of $8 an hour if they were not helped. I also think that both of them would be seriously depressed and their self esteems in the toilet. We have done a lot of emotional repairing and even counseling to help them get over the school trauma.
How are your children now?
See above. 🙂
I want to thank Kathy for her courage in telling her children’s story, as well as many useful tips for Delaware parents. As I have said all along, never walk into an IEP meeting without an advocate, take notes, and save all emails from any school the moment you walk into the door the very first day.
If you are a parent in need of an advocate, please contact Kathy Willis at email@example.com
5 thoughts on “Meet Kathy Willis, A Delaware Advocate For Children with Special Needs #netde #edude”
Thank you! Kathy is a wonderful advocate for our children and a force to be reckoned with… We need more like her!
Reblogged this on Transparent Christina.
Reblogged this on Exceptional Delaware and commented:
It’s been over 3 weeks since I first posted this, and I’ve gained a lot of new followers since then. Check out this interview with an amazing woman!
Jon’s loving father,
First thanks for creating this blog. I typically do not partake in blogging for a variety of reasons, but since this one is focused on my primary area of advocacy have decided to join in when appropriate.
Since I am posting, I need to state that I am posting as an individual volunteer advocate and parent of a child with a complex disability, and that am not posting as a member, officer or any other capacity or are my comments officially representing the position of any of the multitude of advocacy organizations at the local, state and national levels that I volunteer for.
It was great to read Kathy’s story, and in many aspects mirrors my own.
It does bring up a question as to why all the special education advocates in Delaware to a significant extent work in silos. Yes we may not agree on every item of every issue, but we do agree that our children’s needs are not being met, and that the long term lost opportunity and damage to chidren because of this can to be allowed to continue.
So I will ask, who wants to get together this summer in a SPED advocates summit?
Bill, I think this is an excellent idea, so much so I will be making this a post on this blog!