The Dream Becomes A Reality: Exceptional Advocacy for Delaware Students

It all starts with an idea.  But ideas that roll around in your mind will always be just that.  It is now time for action!  Therefore, this is the birth of Exceptional Advocacy for Delaware Students.

For almost four years I’ve been writing about education in good old Delaware.  It’s taken me from the bottom of Sussex all the way to the tip-top parts of the state.  I’ve been to Legislative Hall and the Delaware DOE building more times than I can count.  And nothing has changed.  In fact, I’m going to say it is getting worse.  Especially with special education.  But it isn’t just that.  It is also issues dealing with school discipline, race, gender, bullying, classroom management, class sizes, safety, and trauma coming into our schools in ways our educators are just now starting to fathom and understand.

To that end, I am taking my email/Facebook/social media/cell phone advocacy out of the digital world and into the schools.  This will be a huge task and I need your help!

These are the issues I am willing to advocate for students:

Special Education: whether it is IEPs or 504 plans, it is important to know your child’s rights, the parental rights, and the rights of the school.  Many parents feel overwhelmed in IEP meetings.  Trying to learn about federal IDEA law, Delaware State Code, and all the pending special education legislation is a task in itself.  Do you have a child with a unique disability that may warrant very specific goals or accommodations in their IEP?

School Discipline: does the punishment fit the crime?  Does the punishment meet the criteria of the school student code of conduct?  Does it follow state law?  If a student has an IEP or 504 plan was it a manifestation of their disability or just poor choices?  What are the rights of students when there are School Resource Officers, constables, or armed security?  When is physical restraint warranted?  How does it work with transportation and busing when a discipline issue comes up?

Trauma: Is your child going through a Post Traumatic Stress Disorder based on violence in their neighborhood?  Or in their own home?  Are their grades falling behind as a result of this?  Are they acting out?  These are students that may not be special education but need an advocate to help schools and teachers sift through these issues so they can give your child the best education possible.

Bullying: Is your child being bullied?  Are you finding the school isn’t doing everything they can to put a stop to it?  What steps can you take to make sure they do?

These are my goals:

To serve any of the above needs or potential conflict a parent may have with a school.

To guide parents on the appropriate ways to deal with the folks in the schools.  This isn’t as simple as it looks, and when things escalate, there is a proper chain of steps to go through.

To work with every school district and charter school in the state to make sure Parent Council Groups for special education are up and running.

To advocate meaningful dialogue between parents and schools.  This is crucial.  But it is also important to make sure there is one adult in the room who can be unbiased and impartial.  Screaming heads don’t get you far.  It might feel good in the short-term, but it is not conducive to the best interests of the one person who matters the most- your child!

To inform parents of their child’s rights and how that applies to the school setting.  To inform parents of the differences between legislation and regulation and what is enforceable and what is not.

To make sure due process rights are followed to the letter of the law in discipline situations.

I am not an attorney nor do I pretend to be.  I am just a parent with my own special needs child who has run the gauntlet with Delaware schools.  If your child’s school building doesn’t know me directly, they know of me.  All the district and charter leaders know me as well as the legislators.  I have contacts all over the place and know exactly who to go to when things need to happen.  I’ve helped parents out for years but it is time to take it to the next level.

I will be doing this work at no cost.  But any organization or business (whatever this turns out to be based on demand) needs funding.  Pure and simple.  So I am asking for donations from folks in Delaware who see this growing need in our state.  Whether it is a dollar or more, every bit counts.  I am willing to go up and down our state to help our kids.  I am centrally located in Dover so my door is open for all!

If you are of mind to help get this going and help sustain this, any contributions are certainly welcome!  Please go to the Exceptional Advocacy for Delaware Students page here: https://www.gofundme.com/exceptional-advocacy-for-delaware

If you are a parent who needs help in dealing with a situation involving your child at a Delaware school, please contact me as soon as possible.  My email is kjohlandt70@gmail.com and we can exchange phone numbers from there.

The Exceptional Delaware Hero Of The Year 2017: Laurie Howard

I normally wait to release this until the last day of the year, but this year’s hero demanded the honor sooner.  You see, Laurie Howard passed away.  Surrounded by her loved ones, she left us far too soon.  Laurie was many things: a mother, a wife, a teacher, and a friend.

I’ve known Laurie for almost three years.  I met her through this blog.  A teacher in Caesar Rodney School District, Laurie and I were in fierce agreement on many things.  That standardized testing in the form of the Smarter Balanced Assessment is wrong.  That every single parent has a fundamental right to opt their child out of that test.  That corporations are slowly taking over public schools and school districts are powerless to stop it.

Laurie even had her own short-lived blog but only a select few were aware it was her.  Back in 2015, Laurie launched a blog where she challenged the Delaware State Education Association to fervently support House Bill 50.  She called out DSEA leadership for their sheepish support of the legislation.  The blog did not last long as Laurie was terrified of being found out and terminated from her job as a teacher.  But it had an impact.  From accounts I heard, Jenner was very upset about Laurie’s blog posts.  But Laurie felt strongly the teacher’s union was in bed with the privateers in public education.  At least their leadership was. I loved that blog and I wish Laurie had been able to continue it but I completely understand her reasoning to end it abruptly.  Many assumed they knew who wrote that blog but they were wrong. It was a secret that I carried to her grave. But I know she would not mind having this knowledge out now. To me, it was one of her many legacies. My only regret is not saving her articles for posterity and remembrance.  When Laurie shut down the blog she deleted all of the posts.

Laurie joined the Delaware Parent Teacher Association in 2015 so she could be in a position to advocate to a wider audience. She was well aware and did research on the corporate education reform movement and the dangers it posed in our public schools.  One of her articles focused on how PISA was a misused test. One of her biggest worries was the growing amount of tracking going on with students.  She felt, and I agree, that schools have become more about diagnosing students than educating them.  She did not like the feds controlling education and thought they should stick their noses out of local control.

In 2016, Laurie started another blog in an attempt to save the Schwartz Center for the arts in Dover.  She was a fervent supporter of theater and the arts.  I wished she had won that fight as well.

Last Spring, Laurie was diagnosed with lung cancer.  She was already set to retire at the end of the 2016-2017 school year.  I had the honor of attending her retirement party at the Schwartz Center in Dover.  She was happy and humbled by so many of her peers and friends celebrating her time as a Delaware educator.

I talked to Laurie over the summer, mostly on social media.  She was scared.  She didn’t want to leave.  But she didn’t want the world to see this.  I did my best to not talk about education matters because I wanted the borrowed time I spent with her to be about her and to see if she needed anything.  On her Facebook page, she talked about how beautiful this world is and she put on a brave face.  In the past few weeks, Laurie put this up on her account:

Okay, time is getting mighty precious lately. I’ve been brought to the Delaware Hospice Center in Milford. My hope is that the awesome care I’ve received the past two days here will provide for extended life opportunities with my friends and family! I was asked to help my friends figure out what to say or do as a result of this stay. Just know if I’m your FB friend, we are friends. I love you, I care about you and your family. You don’t have to send expressions of love and longtime friendships (unless you want too). My love and best wishes for a long and healthy life are sent without question. Love to all!

Laurie’s post was just who she was.  A couple of years ago, Laurie was able to answer a question for me.  One that haunted my soul for a long time.  It was purely coincidental, and while I won’t get into the question, it did give me understanding and comfort about someone.  For the longest time, I thought this person was evil incarnate but Laurie urged me to forgive this person.  And I did.  That’s who she was.

Together with our friend Natalie, we would haunt meetings in Dover.  Especially the Assessment Inventory Committee and meetings about the opt out bill.  We would give public comment about how bad the testing was and how it wasn’t right for Delaware children.  Laurie’s struggles with students in the classroom over this test are very similar throughout the state.  My only wish was that Laurie would have been able to use her voice at its full force because it was a voice worth hearing. I will miss you Laurie Howard. I find comfort that you are watching over all of us and I pray that you can impart your wisdom to those who think education is a financial playground. I know Laurie would want me to keep fighting the fight, and I will, the best I can.  May you rest in peace my sweet friend.

An Important Announcement From The Tourette Association of America

The Tourette Association of America is looking for help with pending research legislation at a national level as well as more inclusion of Tourette Syndrome in a potential reauthorization of the Individuals with Disabilities Education Act (IDEA).  Please follow the links at the bottom of each announcement to get your elected officials to participate in a very important briefing on the research legislation and so they understand how Tourette Syndrome severely impacts students with this disability.

Dear Tourette Association Members, Family and Friends, 

The Tourette Association of America has a great opportunity to advocate to be potentially included in federal legislation known as, H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. This bill will support systematic epidemiological research, data collection and analysis of neurological diseases at the CDC.

 What The Bill Does:

This bill would enhance and expand infrastructure and activities to track the epidemiology of neurological diseases including the incidence, prevalence, and other information and incorporate this into a National Neurological Diseases Surveillance System. In addition it would facilitate further research on neurological diseases at the Department of Health and Human Services (HHS). 

Why This Is Important for Tourette:

Prevalence data on Tourette Syndrome in children is inconclusive and contains conflicting results. In addition, there is little to no information on the impact of the disorder in adults. This bill could establish the prevalence of Tourette and help close the gap between identified and undetected cases, especially among ethnic and racial minority populations in the U.S. The bill could also provide for surveillance of Tourette in the U.S. that could provide insights into the long-suspected environment role in the development of the disorder. 

TAKE ACTION NOW:

On September 16, 2015 the Tourette Association of America and a Coalition of 11 Non-Profit Neurological Disease Associations will be holding a Briefing for Senators and their staff on H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. The briefing is sponsored by the Tourette Association in collaboration with the American Academy of Neurology, American Brain Coalition, Brain Injury Association of America, Epilepsy Foundation, International Essential Tremor Foundation, National Multiple Sclerosis Society, Parkinson’s Action Network, Rare Disease Legislative Advocates, Research!America, and United Spinal. 

Most recently, the bill passed out of the House of Representatives as part of the 21st Century Cures Act. In order to make this bill a top priority in the Senate we are asking that you, your family and friends to email your Members of Congress to ask for both support of Tourette Syndrome and the Advancing Research for Neurological Diseases Act; while inviting staff members to attend the Congressional Briefing on September 16th

Write your Members of Congress and urge them to support this initiative by personalizing our form letter. Email Elridge@Tourette.org to let us know you took action. Thank you in advance! 

Click here to TAKE ACTION NOW!

And the second announcement:

Dear Members, Family, and Friends,

Since 2006, Members of the Tourette Association have witnessed the powerful role policy has in supporting students with disabilities when Tourette Syndrome was included within the Individual with Disabilities Education Act (IDEA).  As Congress discusses ways in which to improve the education system, hold students and teachers accountable we invite you to voice your concern and relay 3 specific recommendations on how to meet the needs of students with Tourette and Tic Disorders.

Why This is Important!

According to the US Center for Disease Control and Prevention (CDC) 80% of children with Tourette have additional health conditions; 50%-70% have co-occurring Attention Deficit-Hyperactivity Disorder (ADHD) and 30-50% have Obsessive-Compulsive Disorder (OCD). Individuals with Tourette routinely have higher rates of anxiety, depression as well as learning disabilities. These conditions can have a negative impact on a person’s education, career and social life; decreasing their quality of life. Please advocate for Tourette and Education Services.

 Click Here to Advocate Now!

 

Meet Kathy Willis, A Delaware Advocate For Children with Special Needs #netde #edude

 

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 advocating4kids@yahoo.com