Special Education’s Future Depends on Your Vote!
October 23, 2018
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While it is our practice not to be political, special education and other disability-related issues have found their way into politics.  Ipso facto, we’re political, especially with the mid-term elections around the corner.  We know that many factors go into a person choosing what political affiliation they are, but if you are open to being a “one-issue voter,” we urge you to consider special education’s future your issue, and your vote for the Democrats.

We ask you to ask yourself:  do you want people who feel that the federal government should have no role in education to write special education policy, or conversely to vote to RESCIND the federal legislation which protects children with disabilities?  Let us give you some background.

Our special education system is a burdensome, complicated one.  The IEP meetings alone are overwhelming for parents, and even educators.   While the federal law protects their children, parents of children with disabilities have to act like Private Attorneys General to secure that to which they are legally entitled. There is no “special education 911” they can call when their child is falling apart; or when they are being bullied; or when they are crying because they are being yelled at because they can’t focus; or when they feel that they are dumb because they have dyslexia; or when they are suicidal; or when they can’t access their own school building in 2018 because they use a wheelchair; or are being denied the basic services to which they are entitled.  The “remedy” parents have to ensure their child’s rights is through the legal system.  What most don’t understand is that, on a day-to-day basis, securing these rights is often the difference between a successful or disastrous daily experience for a student with special education needs, and can alter the course of their lives.

There are two key federal laws which govern the rights of children with disabilities to receive services and accommodations, and to be free from disability-based discrimination in our public schools:  the IDEA (Individuals with Disabilities Education Act) and “504” (Section 504 of the Rehabilitation Act).

As any parent of a child with a disability can tell you, these laws are the “thin blue line” between their child receiving anything like an appropriate education, and chaos.  They know it.  I know it.  You know it.  If it weren’t for these federal protections, children with disabilities would likely be denied entrance, let alone participation, in our public schools.

The federal agency which enforces the Civil Rights of students with disabilities in public schools is the United States Department of Education’s Office for Civil Rights (“OCR”).  The USDE is currently headed by Betsy DeVos, whose policies and practices have lead COPAA (the Council of Parent Attorneys and Advocates) and other major national Civil Rights organizations to file suit TWICE in the last year for actions which blatantly serve to deprive children with disabilities of their Civil Rights.  COPAA has never sued anyone, let alone the USDE, in its 20 year history.  That should tell you something.

We have never in our careers working on behalf of children with disabilities been so fearful that we could go back to a time when children with disabilities have no rights.  It’s more possible than you think.  It’s been painful enough to have to tell our clients over the last two years, many of whom have strong, clear evidence of disability based discrimination against their child, that this is just not the time to pursue it, because of who has been appointed to oversee these vital governmental functions.  Politics has always had some impact, but not like this. And we’re not even getting into the impact that national healthcare has on children with disabilities and their families.

 

If you think how you vote doesn’t impact your child with a disability, you are mistaken.  If you have never been a “one-issue voter,” but this issue is important to you, we ask you to consider your vote be Democratic.

Please share, and vote!

 

“The Note” That Led Me To Advocacy
October 1, 2018
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What if this child is not autistic and the mother is seeking attention?

This is the question that led me to professional advocacy. “The mother” is me. The question was written by a school staff member and discovered in my son’s school files.

 

The Refridgerator Mother Syndrome

Let’s go back to l997, the year my son was diagnosed with autism.  Once I suspected he had autism, I needed to learn more about it.  I couldn’t just google it back then, so I had to look it up the old-fashioned way in an encyclopedia at the library.  It read that autism was known as the “refrigerator mother” syndrome; caused by mothers who lacked warmth toward their children. It went on to say I would have to place my child in an institution.  It’s hard to believe today, but these were the archaic beliefs lurking around back then.  It was the autism dark ages.

The incidence of autism was one in a billion, or at least that’s what it felt like. Schools weren’t prepared for it.  Upon having my son evaluated by a private psychologist, their autism team  recommended ABA (Applied Behavior Analysis), a research-based intervention.  The district refused the recommendation. We had already been providing him this intervention in our home program and saw first-hand that it was working. Knowing it was working, we knew we had to appeal the district’s decision. We depleted savings, borrowed from our families and moved forward and filed for due process.

Finding “the” Note

 

We came across a note while combing through my son’s records during the discovery process, it read “What if this child is not autistic and the mother is seeking attention?”  The question in the note essentially accused me of having Munchausen by proxy syndrome. Could they really believe I was feigning my son’s autism?  It was enough to put a fire in my belly, a fire that fueled me through the due process hearing.

Other Memorable Moments: The Perjury and The Recusal

We hired Attorney Bill Laviano to represent us.  As it turned out, ours was not a conventional due process. Not long into the hearing, an employee testifying for the board committed perjury under oath.  It was a highly dramatic scene.  Days later we would find out that the employee lost their job. I had thought that would be the most memorable moment of the hearing.  It was not.

It had become clear that our hearing officer did not like our attorney.  This worried me.  Toward the end of the hearing, we opened a sealed file which contained proof that the district was hiding key evidence that could change the outcome of the case. Upon this discovery, the hearing officer admitted he could no longer be unbiased (no doubt due to his disdain for our attorney) and recused himself from our case.  This was another highly dramatic and memorable day.  This was the day I learned that important legal decision could be influenced by the way people feel about you. After nearly six months of the hearing, we learned we had to start all over again.

Months later, we were assigned a new hearing officer. It was also the start of a new school year and the district was holding their back-to-school convocation.  All school employees were in the audience when it was announced that there was a “difficult family” with a “son who had autism” who had taken the district to due process.  They went on to explain this case was the basis of the board employee losing their job.  That night I got a phone call from a staff member attending the convocation. The phone caller explained how they were talking about us at the convocation. While never saying our names, he knew they were talking about us because, well, we live in a small town. Feeling violated, I called Bill Laviano. He explained that they had breached my son’s confidentiality, which was against the law because my son’s educational records were protected under FERPA (Family Educational Rights and Privacy Act).  This is the educational equivalency of HIPPA.  It turns out you don’t have to say someone’s name to breach their confidentiality.  If you give enough personally identifiable information for people to figure it out, that’s all it takes. We had been outed.

And with one phone recounting the events at the convocation, the entire case came to a close and the district agreed to place my son in an alternate school. Like I said, it was an unconventional case.

The Good and Bad of Due Process

 

Due process was exhausting, expensive, time consuming, soul depleting and taught me about navigating the special education system at its worst.  But I was lucky to have worked with the best attorney. I soaked up every bit of what he taught me. Attorney Laviano treated me like a daughter (by the way, he didn’t need any more; he already had four). He talked to me like a dutch uncle. When he asked me to explain a detail about the case, he didn’t want to waxing on and on; rather to get straight to the point, and when I didn’t he would say

“Julie, when I ask you the time,

don’t build me the watch!”

He added a few expletives, however!  He taught me many other pearls of wisdom that I use to this day, including that when you advocate for yourself, you can greatly improve the situation and ultimately change the outcome of your child’s life.  It pays to know your stuff and have the mindset not to give in and give up. I learned there’s nothing in life worth fighting for more than your child.  It’s also when I met Bill’s daughter, Attorney Jennifer Laviano, who also represented us in our hearing.  You’ll hear more about Jen later.

 

Autism on the Rise

So the due process was over and my son was in the ABA school.  It took months for me to shake off the fight mode I had been in for so long.  It was time to go back to work. I was considering reentering public relations or television production, the fields I had worked in related to my degree in journalism broadcasting. Meanwhile, autism was being featured on the news as the numbers were rising every day.

Parents in the growing autism community had heard I was one of the first cases in my state to go to due process over ABA services. People had heard I took on the system and were calling me. A lot.

I spoke at length to everyone who called.I enjoyed helping parents. We were all a part of the same club. The calls kept coming, finally mounting to the point where it was taking on a life of its own. I was attending IEP team meetings with parents and enrolling in comprehensive trainings on special education law. I also joined a group of parents who started Connecticut’s Families for Effective Autism Treatment, a great organization devoted to supporting parents, raising awareness, and expanding treatment resources.  I was busy doing my part as a founding board member.  When pondering my next move, I realized that I had already started building a business as a special education advocate. All I had to do was to make it official. That’s how it happened.

Build it and They Will Come

Autism has become an industry.  The sheer numbers have demanded a response. When my son was diagnosed, we had to hire a Board Certified Behavior Analyst (BCBA) from another state because we couldn’t find a one in ours. Today, the principles of ABA continue to be more acknowledged by school districts. BCBA’s increasingly have a seat at the IEP team table. School districts are challenged by the number of children who have autism and have no choice but to build capacity around the needs through a variety of interventions.

As much as I love what I do, I wish my phone would stop ringing because that would mean schools are always providing appropriate programming. A girl can dream.

I never wrote of this story while my son was in school. My son is an adult now.  He has skills and is thriving. It seems forever ago I was accused of faking my son’s autism and having some kind of sick agenda of my own. This thought was held by people who didn’t have the benefit of knowing what we know today or the knowledge of appropriate interventions available.

I strongly believe that you don’t have to become a professional advocate to secure appropriate services for your child, but you do need to know your rights and be savvy to the system.

Remember Bill Laviano’s daughter, Jennifer? Well, Jen and I became friends and share a passion for simplifying special education laws for parents. We became co-founders of a video-based website called www.yourspecialspecialeducationrights.com and wrote a book called Your Special Education Rights: What Your School District Isn’t Telling You.

And my phone? It doesn’t stop ringing. I’m a special education advocate, this is what I do. When people ask me to explain what a special education advocate is, I say I’m in the business of improving educational outcomes for children who have disabilities. Not bad work!

Please Don’t Call Me “Mom”
November 17, 2017
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Hello, my name is Julie. There is nowhere I personally go in my daily life where adults call me “mom,” so it is with great wonder that it happens to the mothers with whom I work at IEP team meetings with regularity. Now for some reason, I don’t experience that fathers are referred to as “dad” as often.

As a parent of a child with a disability and a special education advocate, this practice used by school staff really bothers me. It usually begins right at the beginning of the meeting when everyone goes around and introduces themselves. Parents will say their names, usually followed by “I’m the mom or dad.” So for the rest of the meeting everyone on the team calls the mother “mom.”

While the speech and language pathologist says “I’m Susie, the speech and language pathologist,” nobody refers to her as “speech and language pathologist.” People around the table call her “Susie.”

The cynic in me believes that referring to mothers as “mom” lessens their position as an equal team member. Being the “mom” to my sons is my greatest accomplishment in life, but I still want to be called by my name, it’s Julie.

I have a solution for it. As an advocate, I never refer to the parents with whom I work as “mom,” or “dad.” I call them by their names. In this way, I try to model the behavior I would hope the rest of the team follows. It rarely happens that team follows suit, by the way, but a girl can try!

My advise to parents is to politely ask staff to call them by their name. It’s easy. When a team member calls you “mom” or “dad,” politely say ” Oh you can call me “Ellen.”  When they do, thank them. I strongly believe that you can’t change other’s behaviors until you change your own, so expect your team to call you by your name – politely at all times, of course! Claim your seat at the table as a team member who has a name just like everyone else!

Dear Target…Please Make this Change for Adults with Special Needs and Their Families
February 25, 2016
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CHECK THIS OUT!  We’re so proud of our resident activist Julie Swanson!  Read her “Dear Target…” blog recently published in TheMighty.com

Why Your Child’s Desk Matters

For many school children with disabilities—especially those with an IEP or a 504 plan—the ability to get up and move around the classroom is a common (and practical) accommodation. Be it standing, walking, jumping, or getting the wiggles out in general—for these kids, the freedom to engage in physical activity throughout the learning day is critical to their success. Read more

5 Simple Steps to Stop Transportation Tragedies at School
September 22, 2015
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photo courtesy Eiden Lee

photo courtesy Eiden Lee

With the recent headlines of another student with special education needs losing his life on a bus, it’s time to insist that transportation providers participate in the IEP team process.  It’s time because we should not tolerate one more tragedy of a student with disabilities who loses their life for lack of planning. Read more

COPAA Round-up from Paradise

We’ve just returned from Paradise, as in Paradise Point Island, San Diego, where we attended the 17th annual COPAA (Council of Parent Attorneys & Advocates) conference.  We can’t say we missed the snow!

COPAA’s conference is an annual source of inspiration to us, as we join our colleagues in protecting the Civil Rights of students who have disabilities. At YourSpecialEducationRights.com, we constantly strive to empower parents, and COPAA is an organization committed to this cause we hold so dear. Read more

Lessons from Darien’s Special Education Audit: Don’t Assume Anything is as it Seems

It’s a sad fact that many parents have to question if their school districts are actually providing the services laid out in their child’s IEP (Individualized Education Program).  We see it often in our special education advocacy.  It’s not uncommon for a parent to report to us that their child told them they haven’t been receiving their special education and related services.   It usually happens something like this:  “So, Tommy, have you been enjoying working with Mrs. Jones in the speech room?”  “Oh, I haven’t seen Mrs. Jones since Halloween.  I think she might have had a baby or something.  I’m not going to the speech room anymore.”  Yikes!

Even worse, for many children who, due to the nature and severity of their disability, can’t tell their parents what is happening in school, parents suspect services aren’t being delivered, but have a hard time knowing for certain.

So we were not surprised to learn that a financial audit, which was part of an on-going probe of Darien, Connecticut’s special education department, revealed fraudulent practices that are downright sickening. The Darien special education department received over $200,000 for special education services that never happened! You can read the details here.  Before the audit of their special education books, a deep probe into the school district’s overall special education practices and procedures revealed serious violations of the IDEA (Individuals with Disabilities Education Act).  Now we have learned that, not only was Darien removing necessary services from children’s IEPs, but they were charging the State for those services anyway!

While your school district may not be puffing their special education books to receive extra funds (and we certainly hope they aren’t!), you may believe or suspect your child isn’t receiving their prescribed services.

So how do you prove it?

In our experience, questioning the integrity of teachers and school staff can lead to serious ill-feelings.  No parent really ever wants bad blood with the very people who are working with their child.  But let’s face it, this is serious.  You’re entitled to know if your child is actually receiving what is in their special education plan, and your child is entitled to be receiving those services.

So how do you ask for documentation that doesn’t put everyone on the defensive and, from a practical standpoint, get you the information you need to help your child?  And there it is, “the information that you need to help your child.”  As parents, we want to know what our child is working on so we can reinforce or generalize the skill at home or in the community, depending on the skill.  We also want to know whether the services the school is recommending in the IEP are working!  Here are a few easy ways to get the information you need:

  1. Ask that a home/school communication log be developed.   This can take many forms:  email, notebook, or a specially-designed form that can capture what was worked on at school.  If your child is missing services, it should be fairly easy to notice if that provider isn’t filling out their portion.
  1. Ask for regular “team meetings” that include you as a parent.  These can be monthly, bi monthly, or quarterly.  We suggest that you have those meetings put into the IEP as required to happen.  When you meet with the team, you should be able to have a better sense of whether services are being delivered regularly.
  1. You can ask to observe a particular session in school.  This will require advance scheduling and notice, but this is a good way to get a sense of what is happening.
  1. Ask your child.  We realize there are some children who are non-verbal, but if your child can communicate, and is a fairly reliable reporter, this is often the best way to find out if a service is happening.

As with all things related to special education disagreements, make sure you are documenting any services you feel have been missed.  If it’s happening a lot, put an email or letter together to the district asking why your child is missing these services.  If it becomes an issue, your district may have to make up those sessions at a later date through what is called “compensatory education,” so it’s important to keep records.

Lastly, we want to say that we know that there are wonderfully dedicated teachers and school staff where these suspicions do not apply.  We also know that educators have the same life challenges we all have; they get sick, they have family members who pass away, etc.  But we need to take a page from the Darien, Connecticut probe, and not assume that everything is as it seems.

 

From Cruelty To Understanding: Trends In Special Education From Then To Now
August 7, 2014
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Here at YourSpecialEducationRights.com,  we are all about simplifying your special education rights.  That’s why we love this infographic on the history of special education brought to us by the folks at special-education-degree.net

Spec_Ed_Trends_112113

The Sentence That Changed My Life

It’s hard to fathom, but there was a day when autism was attributed to mothers who were “cold” and unaffectionate to their children.  It was a prevailing theory in the 1950s and 1960’s and, at the time, mothers were referred to as “refrigerator mothers”.  It was the theory that attributed blame to the mother.  That blame game was still playing in 1997 when it hit me right between the eyes.

I was forced to learn all about “refrigerator mothers” and the history of the phrase when these words  were written by an educator questioning my motives upon referring my son to special education.  I was not meant to see the note…. but I did.

My son was not yet three and he was receiving early intervention services.  When his early intervention team made the referral to special education in my school district, the incidence of autism was negligible.  No one was talking about autism because the incidence was so low.  So when my son showed up on the district’s doorstep with the diagnosis of autism, all be it more than forty years after the “refrigerator mother” theory began, the theory was still alive.

I had first come across the phrase “refrigerator mother” when I learned that my son was diagnosed with autism.  He was two.  Let’s put it this way, it was 1996 and I didn’t own a computer and this thing called the “internet” was just starting.  I remember telling my husband that I wanted to get a computer and he said, “Let’s see if this internet thing takes off before we invest in one.”  Anyway, when my son was diagnosed with autism I had vaguely heard of the word “autism.”   I headed down to my town library and looked it up in an old set of encyclopedias, which was the only set they had. That’s when I learned about Leo Kanner, who first identified autism in 1943.  Kanner noted that many parents, especially mothers, were “cold” and unaffectionate to their children with autism. Although Kanner coined the “refrigerator mother” theory, it was Bruno Bettelheim, a child development specialist, who facilitated its widespread acceptance in the 1950s and 1960s. The encyclopedia entry also said my son would have to be institutionalized.  I cried for weeks.

So when I read the words, “what if this child does not have autism and the mother is seeking attention,” it was clear that this educator suspected that I might be to blame.  You can imagine my shock and, quite frankly, anger!   Then I remembered the old encyclopedia and the “refrigerator mother” syndrome.  This theory started a mindset of blaming the mother.

Looking back, I suppose that archaic theory for autism, which still permeated people’s thoughts, was the impetus for me to become the advocate that I am today.  I hold no grudge as, in retrospect, I realize that the theory had powerful roots that fortunately have been debunked.  However, those words lit a fire in my soul I have never been able to extinguish.   By the way, we did get one of the computer things and that internet really took off.

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