“The Note” That Led Me To Advocacy


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.  My son had just been diagnosed with autism, which I had to look up in a set of encyclopedias from the 1950s.  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. These were still the prevailing archaic beliefs lurking around back then.  Back when there was no internet, or at least like we know it today; and no one I knew owned a computer, including me.  ABA (Applied Behavior Analysis) was a form of intervention questioned with skepticism by school districts.  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 a research-based intervention they believed he required. The district refused to provide a program based on the principles of ABA, the recommended educational intervention. We had already been providing him this intervention in our home program and saw first-hand that it was working. We didn’t blink appealing 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 the note while combing through my son’s records during the discovery process.  The note fueled me through the hearing.  Could my suspected Munchausen by proxy syndrome be rooted in the refrigerator mother syndrome theory? Could they really believe I was feigning my son’s autism?


The Recusal

Ours was not a conventional due process hearing. We hired Attorney Bill Laviano to represent us. I learned quickly that our hearing officer wasn’t a fan of Bill.  It was during our due process that I also met Attorney Jennifer Laviano, Bill’s daughter, who participated in our hearing.  You’ll hear more about Jen later.  Weeks and tens of thousands of dollars into 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) he recused himself from our case. 

This is the moment I learned important decisions, even due process decisions, could be influenced by the way people feel about you. We were assigned a new hearing officer and had to start all over again. By the time the hearing was going to resume, it was the beginning of a new school year. The day before the official start of school, the district held their staff convocation. I will intentionally be evasive when identifying parties involved in the events. Even though it’s years later; and the fact that the school actions are not protected, I have no interest in calling any one out. At the convocation, an administrator explained to the staff that a high level administrator was no longer working in special education. The reason, it was explained, was due to a “difficult family in town” that had taken the district to due process.

The Perjury


Oh wait, heres where I have to go back an explain a key detail about our hearing. Among the staff testifying on the board’s side, this high level administrator was no longer working in the special education department.  As it turns out, this person perjured themselves during their testimony while under oath.  And like that, this staff member was no longer in their position and absent from the convocation. The person at the convocation explaining this squarely placed the blame on the “difficult family.”  That night I got a phone call from a staff member attending the convocation . The phone caller explained that this person had gone on and on about us and my son. 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. Even though the person never said our names, they gave enough personally identifiable information for people to figure it out. We had been outed. And with one phone, 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 what good can come out of the process when you advocate for yourself.  It pays to know your stuff and not given in and give up. I learned there’s nothing in life worth fighting for more than your child.

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

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

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
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

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


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.

Forrest Gump and The History of the IDEA
July 24, 2014
Photo property of Paramount Pictures

When we talk to parents about the history of the IDEA (Individuals with Disabilities Education Act), we often refer the to movie Forrest Gump.  Forrest, portrayed by Tom Hanks, is a child in the 1950’s with a low IQ and leg braces.  In the movie, Forrest is prohibited from attending his public school.  His mother, portrayed by Sally Field, meets with the principal who agrees to enroll Forrest in exchange for sexual favors with her. While this movie is fiction, it accurately depicts a time in history when students with disabilities were legally turned away from the schoolhouse doors.

Riding the wave of the civil rights movement of the 1950’s and 60’s, parents of children with disabilities were fighting to get their children equal access to education.  Unbelievably, as recently as 1970, public schools in the United States only educated one in five children with disabilities; literally millions of children were turned away from school.  In 1975, Congress enacted the Education for All Handicapped Children Act (Public Law 94-142), which was designed to support states and localities in protecting the rights of, meeting the individual needs of, and improving the results for infants, toddlers, children, and youth with disabilities and their families.  States who “opted in” to the funding attached to the federal law agree to follow the mandates contained in it; all States have chosen to accept the federal funding and are therefore bound by its procedural and substantive requirements.  This landmark law was amended by President Bill Clinton in 1997 and became the Individuals with Disabilities Education Act (IDEA).

Circumstances for children with disabilities before the enactment of Public Law 94-142 were grim. Too many individuals lived in state institutions for persons with mental illness and intellectual disabilities.  For example, In 1967, state institutions were homes for nearly 200,000 persons with significant disabilities. Many of these restrictive settings provided minimal food, clothing, and shelter. Too often, persons with disabilities were merely accommodated rather than assessed, educated, and rehabilitated.

In the 39 years since the passage of Public Law 94-142, significant progress has been made toward meeting major national goals for developing and implementing effective programs and services for early intervention, special education, and related services.

To learn more about the history of the IDEA:


Photo property of Paramount Pictures

YSER Featured in Autism Asperger’s Digest
April 22, 2014


Autism Asperger’s Digest — a premiere publication that regularly feature columns by disability experts such as Temple Grandin, Ellen Notbohm and James Ball! We are proud to be mentioned (and quoted) in the “What’s New” section of their March 2014 edition! Click here to access the issue.

No Days From Snow Days & Other Acts of Nature

We are often asked here on the East Coast if the instruction lost from snow days for students who receive special education should be made up by the school district. While snow days certainly don’t happen in all parts of the country, there are lessons to be learned for other cancellations of school due to weather events or unforeseen closures of school.  The question really is this: if school is cancelled for everyone, regardless of the reason, should lost instructional time for student who have IEP’s (Individualized Education Programs) be made up?

Let’s break it down.  Here in Connecticut, for example, too many snow days cause many school districts to go under the number of instructional days required by the State.  Each state has its own number of required instructional days.  When this happens, school districts are forced to borrow days back from the winter or spring vacations or add them onto the end of the school year.  In this case, everyone’s snow days are being made up and there should be no issue for students who receive special education.

But what about snow days that aren’t made up for everyone?  Students with disabilities are entitled to receive the same benefits of their school system that all students receive, otherwise it would be discriminatory.  In a situation in which ALL students have missed school, the child with a disability is being treated the same as his or her non-disabled peers. In fact, there is no mention of make up days for student’s who have IEPs anywhere in the IDEA (Individuals with Disabilities Education Act).

That said, the loss of instructional time can certainly have a different impact on a student who has an IEP, so I suppose one could make the argument that the loss of instructional time could result in a denial of FAPE (Free Appropriate Public Education).  If the loss of instructional time truly resulted in the denial of FAPE, then the reasonable request would be to ask for compensatory education.  Compensatory education is truly make-up instructional time which “compensates” for a loss.  If this is the route that you choose as a parent, proceed with caution as the denial of FAPE must be demonstrated and documented.

Our analysis boils down to this: generally speaking, school cancellation which effects all students equally would be hard to argue as having a discriminatory effect on students with disabilities.  However, whether the impact of significant absences from school would pose great harm to a student with a disability in a way which would impact that child’s IEP must be reviewed, as with all IEP considerations, on an individual basis, and based on that child’s unique needs.

Safety First

When I learned the news about Avonte Oquendo’s disappearance, I reacted as a mother of a teenage son who has an autism spectrum disorder, intellectual disability and is non-verbal.  I reacted as a mother whose own child had gone missing on the way home from school.  I also reacted as a special education advocate who has worked with hundreds of families who have children who are similar to Avonte and mine.  When you have a child who needs supervision to be safe, Avonte’s story is a parent’s worst nightmare.

I shudder for Avonte’s parents and wonder, “how could this happen?”  The fact is it shouldn’t happen.  It is unconscionable and unjustifiable.  I’ve followed the news about Avonte and I hope changes will come as result of this tragic, tragic course of events.

It took a frightening event with my son for me to realize that I could have his IEP (Individualized Education Program) reflect protocols to address safety issues.   In my son’s case, his van was a half hour late coming home from school, which never happened.  I know my situation can’t compare to what the Oquendo family has gone through, but it was the event for me that made me realize I must put safety first in my son’s IEP.  So on that day, when the van was 10 minutes late I called my son’s aide on his cell phone.  His aide was a wonderful grandfather who cared for my son like his own. He informed me that the driver deliberately took off without him and he was furious about it. I immediately called the police to see if there was traffic on the route they traveled. There was not. I alerted the police about the situation. Twenty more painful, panic-filled minutes passed. When my son finally arrived home, I was furious with the driver.  I asked him why he left the bus yard without my son’s aide.  He said, “I didn’t know he had to come with me.”   I knew he was lying as he had driven with my son and his aide for the entire previous week.  He had deliberately left without him, which I imagined was to get my son alone.  Needless to say he was fired.  So many things had gone wrong that should have never been allowed to happen.

All I knew was that my son was alone with this man for a half hour which could not be accounted for.  My son could not tell me what happened.  What an awful feeling it was when I had to check my son’s private areas.  To this day, I will never know if anything happened.  But I’ll tell you what, I was a mother on fire!

From that day forward, his IEP included detailed instructions for the transportation company and his school.  The driver is to never leave the bus yard without the aide, the driver and aide are assigned to my son’s route and follow the protocol, and there is a plan in place for when either one of them is sick and can’t drive that day.  My son’s school has a protocol which details that he should never be released from school if the driver shows up alone.  This safety plan is a part of my son’s IEP.

I do also worry about wandering off and elopement at school.  Thankfully, a safety plan for wandering isn’t something I had to incorporate into his IEP as his school follows strict, school-wide procedures.

Wandering and elopement is a common challenge for many children and adults who have autism and other developmental disabilities.  When your child is at risk for elopement at school, I want you to know that you can meet with your IEP team and request a written plan or protocols to address behavior that puts your child at risk.  You can request ongoing staff training on the written protocols.  I’ve been involved with many IEP teams over the years in developing and incorporating safety plans into the IEP.  Also, ask to see your school’s written, school-wide protocols for elopement.

Whatever puts your child at risk, please, please know that you can address it through your child’s IEP.

Must A Child with "High Functioning Autism" Receive an IEP?
September 30, 2013

As a special education advocate in Connecticut, I can’t tell you how many times I have sat in IEP Team Meetings and heard this from the school district: “just because your doctor says he has autism doesn’t mean he needs special education,” “and besides, he’s getting great grades in all of his academics.”

To which I say: “yes, we know that. However, can we look beyond  his grades and talk about the fact that he has no friends, sits in the lunch room alone, can’t organize his homework, and is being harassed by other kids daily?”

This is what typically occurs when my client has “high functioning” autism. By the way, you need to know that I can not stand the term “high functioning;” I prefer to say “less affected” by autism. Unfortunately, that phrase hasn’t caught on yet, so I’ll say “high functioning,” so you know what I mean.
This is where I turn to the Team and say, and here’s what I want you to remember: “Education is not just about academics!”
Here is a great article from my friend and colleague Jennifer Laviano, a special education attorney practicing here in Connecticut.
So just remember, when you have your son or daughter evaluated to determine whether they have an autism spectrum disorder, make sure he or she is evaluated in all domains, not just academics.  And,  don’t forget to keep the “I” (individualized) in IEP!!!!

People First Language
September 30, 2013

Talking about people with differences can become a touchy subject.  Everyone seems to have an opinion and sometimes we end up offending people, even if we try not to offend.

For me, disability impacts me personally, so I recognize that I can be sensitive about it.   In my case, I have a son who has autism.  It gets under my skin when I hear people say “he’s autistic,” or “he suffers from autism,” as examples.  When I refer to my son, I say “he has autism” because, for me, his autism is not the only thing that I believe defines him.  You will never hear me say he “suffers” from autism.  I just can’t define my son as “suffering.”  If anything, he “flourishes.”

Here’s a simple thing to consider.   Put the person first, this is called person-first language.   It suggests people to say things like “Susie has Downs syndrome,” rather than “she suffers from Down syndrome,” or “she’s Downs.”

Imagine if we did this for people who might not have a disability, but have definable qualities.  For example, bitchy Joanne, mean Robert, cheater Peter.  I’m obviously try to make a point here.  Why offend a person who has a disability or someone who loves them, when it’s just so easy to put the person first.

You may still end up offending someone who believes their disability or difference does define them, but you might be less likely to do so.

Examples of People First Language

Say This Not This
people with disabilities the handicapped, the disabled
people without disabilities normal, healthy, whole or typical people
person who has a congenital disability person with a birth defect
person who has (or has been diagnosed with)… person afflicted with, suffers from, a victim of…
person who has Down syndrome Downs person, mongoloid, mongol
person who has (or has been diagnosed with) autism the autistic
person with quadriplegia, person with paraplegia, person diagnosed with a physical disability a quadriplegic, a paraplegic
person with a physical disability a cripple
person of short stature, little person a dwarf, a midget
person who is unable to speak, person who uses a communication device dumb, mute
people who are blind, person who is visually
the blind
person with a learning disability learning disabled
person diagnosed with a mental health condition crazy, insane, psycho, mentally ill, emotionally disturbed, demented
person diagnosed with a cognitive disability or with an intellectual and developmental disability mentally retarded, retarded, slow, idiot, moron
student who receives special education services special ed student, special education student
person who uses a wheelchair or a mobility chair confined to a wheelchair; wheelchair bound
accessible parking, bathrooms, etc. handicapped parking, bathrooms, etc.
Extended School Year Services – To Serve or Not to Serve?

Summertime is fraught with misunderstanding when it comes to special education services.  The question is to serve or not to serve over the summer months?

Extending the IEP, or parts of the IEP, over the summer is not the rule, rather the exception to the rule.  However, in my experience, the proper procedures are rarely followed when considering Extended School Year (ESY) and, minimally, every team should consider whether ESY is necessary to provide a Free Appropriate Public Education (FAPE).

The principle that each student with a disability is entitled to an individually designed education was established in a series of court cases that led to the adaptation, in 1975, of the federal law now known as IDEA. A subsequent series of court cases and policy clarifications established that providing special education services beyond the usual school year is a part of the guarantee of the free, appropriate public education (FAPE) clause of the IDEA. These decisions have prescribed the basic requirements for ESY program eligibility and defined some related ESY elements, such as the length and type of the ESY program, and funding matters, including transportation.

In addition, the Office for Civil Rights (OCR) of the Department of Education ruled that even students regarded as disabled under Section 504 of the 1973 Rehabilitation Act, and not eligible for services under IDEA, have to be considered for ESY services. A letter of finding, issued by OCR regarding the Baltimore city public schools, states that “Section 504 regulations require that the individual needs of every child be examined, considered, and met. While 180 days of school may be adequate for some handicapped students, it may not be adequate for others…”.

Eligibility for ESY services at no cost to parents is determined by the child’s Individual Education Program (IEP) team. This IEP team must consider, as appropriate, whether a child needs extended school year services in order to receive a free appropriate public education (FAPE). Clearly, this determination must be done on an individual basis.

The program of ESY as part of the IEP is not simply an extension of time in school, nor is it required for every student. Nevertheless, it is the function of the school district to evaluate the need for ESY services correctly and fairly. This issue is made more difficult by the fact that there are no comprehensive eligibility criteria in the law, and only general standards have been mentioned by the courts for including ESY in the student’s program.
What follows is a compilation of ESY standards discussed by various federal courts throughout the country (At the time of this writing, no ESY case has been decided by the Court of Appeals for the 7th Circuit which includes Wisconsin). These ESY standards could become part of the school district’s comprehensive staff training on this issue.


The first standard that has been mentioned by many federal courts is that no single criterion can be used as a sole qualifying factor. For example, the Tenth Circuit Court of Appeals (Johnson v. Independent School District No. 4) concluded that a single standard could not be used as the sole criterion for the provision of ESY services.Also, in a recent case, Reusch V. Fountain (1994), cited a Maryland school district for “…the use of a standard for ESY eligibility which was incorrectly limited to a regression / recoupment analysis and did not consider other factors which were relevant in the ESY determination.” The decision said that this standard may be used, but only as one part of a multi-faceted inquiry.


Judicial decisions have outlined various areas of considerations for determining eligibility, starting with the concept of regression / recoupment first established in Battle v. Commonwealth of Pennsylvania (1980).Regression refers to a decline in knowledge and skills that can result from an interruption in education; recoupment is the amount of time it takes to regain the prior level of functioning. The issue is whether the benefits derived by the child during the regular school year will be significantly jeopardized if he is not provided an educational program during the summer months.This criterion for eligibility, although it is a primary consideration to be used by IEP teams, is still only one of several criteria to be considered in making ESY decisions. It covers both instructional and related services for the prevention (or reduction) of academic and physical regression.

For some students, the skill regression during the summer months, coupled with their limited recoupment ability, is such that their basic educational needs cannot be met in a traditional 180 day program.

As one example or reference point, the IEP committee could determine that more than 45 school days (9 weeks) will be required to return the student to the former level of achievement because of the interruption of summer vacation.

The determination of ESY eligibility must be based on empirical and qualitative data collected by the IEP committee for individual skills. The IEP committee must take into account not only retrospective data, but also predictive data on recoupment abilities (will the recoupment take 9 weeks or more?). The key question before the IEP committee is whether the child needs services in the summer in order to secure the minimum benefits of a free and appropriate public education in the fall.


A more recent case, Reusch v. Fountain (1994), noted that “… ‘emerging skills’ and ‘breakthrough opportunities’ (as when a child is on the brink of learning to read) – can and should be incorporated into the eligibility analysis.” The child is in a critical stage of developing a skill which has great potential for increasing his/her self-sufficiency. If such a skill is not completely acquired and mastered, it is likely that the current level of acquisition will be lost due to the interruption of summer vacation.


Another criterion usually included in the eligibility determination is the nature and severity of the child’s disability. Although no disability category may be excluded from consideration for ESY, the nature and severity is a key factor in the ESY eligibility determination. Children with severe disabilities are more likely to be involved in ESY programs, since their regression may be more significant, and their recoupment abilities may extend over longer time.


Another point made by the court in the Reusch v. Fountain case was the importance of making a decision about ESY early enough in the year to allow the parents adequate time to exercise their right to administrative review or appeal in a timely fashion.That decision of the U.S. District Court in Maryland prescribed very specific requirements relative to ESY procedures. The court found that the explanation about ESY contained a brochure distributed to all students was not sufficient and ordered additional explanation to be provided to parents.The court also ordered that the student’s eligibility for ESY be considered at each annual review meeting, and that parents sign a form acknowledging their receipt of this information. The district must document the discussion and the decision reached after consideration of ESY eligibility at each annual review meeting.


Some ESY services may extend over the summer, while others provide only for periodic contact with professionals, or assistance to parents in providing instruction or reinforcement to their children.OSEP issued a policy letter stating that limiting the duration of summer programs for students with disabilities “…would violate the basic requirement that programs be designed to meet the individual needs of each child” (Letter to Baugh, 211 IDELR 481, 1987).Requirements for specifying the content and duration of ESY programs were also strongly stated in the Reusch v. Fountain decision. The court mandated “…individualized determinations of the number of weeks, days per week, and hours per day that each student receiving ESY should be provided”.

Also, the content of the child’s ESY program must be determined on an individual basis. In response to an inquiry: “May LEAs refuse to provide related services, including transportation and therapy services, to students who are in need of and receiving such services during the regular school year?” OSEP responded: “No”.


A number of federal courts (Johnson v. Bixby, 10th federal circuit court, 1990; Battle v. Pennsylvania, 3rd federal circuit court, 1980) mentioned that one of the standards that needs to be considered in determining need for ESY is the ability of the parents to provide an educational structure at home. If parents can provide the proper structure at home, the regression and recoupment issue will not be as severe, thus ESY services through the school staff may not be necessary.
Interventions during the summer may be provided by other than school staff. For example, parents may be able to provide structured opportunities for their children to practice specific skills. Perhaps the student’s utilization of a computer software program will be sufficient to maintain a critical skill. Perhaps accessing an existing community resource, such as a summer recreation program, will meet the need. If so, the provision of such parental services will not necessitate an ESY program. The IEP committee may recommend ESY services after concluding that (a) parents are not able or willing to provide home structured opportunities, or (b) the involvement of EEN staff during the summer is necessary to offset the impact of regression and recoupment.

  • Based only on the individual student’s specific critical skills that are critical to his/her overall educational progress as determined by the IEP committee.
  • Designed to maintain student mastery of critical skills and objectives represented on the IEP and achieved during the regular school year.
    Designed to maintain a reasonable readiness to begin the next year.
  • Based on multi-criteria and not solely on regression.
  • Considered as a strategy for minimizing the regression of skill, thus shortening the time needed to gain back the same level of skill proficiency that existed at the end of the school year.
  • Deliverable in a variety of environments and structures such as:
    (a) Home with the parent teaching, and staff consulting
    (b) School based
    (c) School based with community activities
    (d) Related services alone or in tandem with the above.
  • It is not a mandated 12-months service for all students with disabilities.
  • It is not required for the convenience of the school or parents and, therefore, cannot serve as a day care or respite care service.
  • It is not required or intended to maximize educational opportunities for any student with disabilities.
  • It is not necessary to continue instruction on all of the previous year’s IEP goals during the ESY period; rather, the focus should be on those specific, critical skills where regression, due to an extended vacation period, may occur.
  • It is not to be considered to help students with disabilities advance in relation to their peers.
  • It is not for those students with disabilities who exhibit regression, which is solely related to medical problems resulting in degeneration, or transitional life situations such as divorce or death of a family member. This type of regression is not due to the interruption of summer vacation.
  • It is not required solely when a child fails to achieve IEP goals and objectives during the school year.
  • It is not to provide a child with education beyond that is prescribed in his/her IEP goals and objectives.


Our thanks to Nissan Bar-Lev and the staff of Cooperative Educational Service Agency #7 for permission to use this article. URL: http://www.cesa7.k12.wi.us/sped/issues-esy/esymemo.html

9 In 10 Kids With Autism Bullied At School

By Shaun Heasley

Nine in 10 Massachusetts parents of kids with autism say their child has been a victim of bullying at school, a new survey finds. In over half of the cases, the bullying included being hit, kicked or chased.

The results come from an online survey conducted by Massachusetts Advocates for Children of nearly 400 parents of children with autism across the state. Findings indicate that 88 percent of children with autism have been bullied at school ranging from verbal abuse to physical contact.

Though widespread, parents indicated that schools were doing too little to address the bullying. Just one in five parents said they learned about the bullying their child experienced from the school. And, in two out of three cases, the bullying lasted for several months with most parents saying their child’s school didn’t do enough to respond.

“Children with autism spectrum disorder are especially vulnerable targets because of the nature of their disability,” says Julia Landau, senior autism center director at Massachusetts Advocates for Children. “Children on the spectrum are often viewed as atypical or different by their peers, and are generally unable to understand bullying incidents and protect themselves like other students due to the nature of ASD, which impacts communication, social and behavioral skills.”

A bill being considered in the Massachusetts legislature would address this problem by requiring individualized education plan (IEP) teams to address bullying faced by students with autism.

Copyright © 2009 Disability Scoop, LLC. All Rights Reserved.

Welcome to YSER!

Already a Member? Sign In


buy ambien|buy antibiotics?buy clomid|

Registering for this site is easy and membership to Your Special Education Rights is FREE! Become a member...

Register >