The Tip of the Iceberg

Published on June 16, 2013 by Jennifer Laviano

It's been a fascinating several months here in Connecticut, as we have watched events unfold in the special education community in Darien.  The coverage has been wide locally, but if you don't want to read it all, here's the upshot:  the Special Education Director in this small, affluent town in lower Fairfield County (itself small and largely affluent), new to the position in the 2012-2013 school year, distributed “training materials” to educators in the community via memos and, yes, a Power Point presentation.  So what's wrong with that?  Well, they included numerous misrepresentations on what an educator and a district's obligations are under the law, and blatantly instructed the educators that they were not to disagree with administration during  IEP meetings.  Under the guise of asking educators to present a “united front” during IEP meetings, the Director effectively thwarted the legally-required open exchange of ideas which is supposed to be the heart of an IEP meeting.

“We must present a united front in IEP meetings” is code for “don't disagree with the administration or make recommendations which might cost us money.”

Thanks to the courage of several parents who were rightly outraged by this directive (among the many, MANY other violations of the federal special education law included in these documents and countless examples of individual violations as well as systemic), and the steadfast representation of their rights by Mystic Attorney Andrew Feinstein, families joined forces and filed a Complaint with the Connecticut State Department of Education.  The Complaint ultimately led to an investigation, which culminated last week in an open forum for parents to tell the State about their experiences in Darien.  This EXCELLENT Editorial by the Darien Times, which has been remarkably committed to getting the truth of this situation despite some fairly strong local opposition (some of which has been truly vile via commentary online) summarizes how that meeting went.

When I read the Darien Times Editorial, I was stunned.  I wish I could say it was because I was shocked by the stories the parents shared.  That wasn't it.  What had stricken me was that the Editors got it!  They GOT that this isn't about a few disgruntled families.  This is the “tip of an iceberg.”  I particularly appreciated their reference to the disparity between Darien's “internal charge” of providing a top notch education for its students, while defending its failures for students with disabilities as reasonable under the IDEA's “appropriate” standard.  For those of you who've been following my blog since the beginning, you know I've been disgusted by that hypocrisy in public schools throughout the State (and country) for years!

The Editorial suggests that the families who've spoken out in Darien represent a “tip of an iceberg” in Darien.  But I've got news for them.

It's not just Darien.

The scary thing to most of us who have been following this is that this type of administrative pressure isn't uncommon; we know it happens all of the time, all over the country.  Teachers approach me after presentations I give, and on a few occasions have even followed me down a hallway after an IEP meeting to whisper “thank you” to me for getting the district to approve the support they needed, but couldn't get without the pressure of the parents hiring a lawyer. Teachers email me or post comments to this blog all of the time, saying that they are conflicted because a student in their charge needs more than the school district will allow them to recommend, and they feel horrible about it.  Sometimes they're subtly being told “you know who pays your check.”  Other times, it's less subtle, and blatantly discriminatory.  I usually remind them that they, too, have rights, and they include not being retaliated against for speaking up about what the IDEA requires for a student and whether they are receiving it.

Even if I didn't have the direct evidence of how some educators feel the administrative pressure not to refer, evaluate, identify, or properly service students with disabilities under the IDEA, I see it on their faces.  In hundreds and hundreds of meetings where I am expressing the Parents' concerns about the inappropriate program their child is receiving, and some of the teachers can't meet my eye, or the parents'.  Or I get the nodded head, or a wink, or something is said by an educator in a way that tells me “please ask me this question right now because the answer to it will get the kid what he needs but I just can't volunteer it!”

The thing that's unusual about what happened in Darien is that the practice to violate the IDEA was written down, and parents got their hands on the proof.

So, perhaps what happened in Darien is what needs to happen everywhere.  Parents need to organize, and tell their stories.  It has to be made clear to the good-hearted people of so many communities, the people like the Editors at the Darien Times, that this isn't the exception; in many towns, it's often the rule.  It's time that administrators who look at special education as an expensive nuisance, rather than as an essential Civil Right designed to ensure that students with disabilities become adults with skills, are held accountable.

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Dyslexia and Specific Learning Disabilities: Obtaining Appropriate Special Education Services

Published on June 6, 2013 by Jennifer Laviano

Tune in to our latest WebShow on obtaining appropriate services under the IDEA for students with dyslexia.   Monday  June 10, 2013 at 8:00 pm EST.  Live Q&A with questions posted on the YSER Facebook Page.  If you have questions in advance, feel free to post them as comments to this page.  We look forward to discussing dyslexia with you; just make sure you join YSER today; it's free.

http://www.youtube.com/watch?v=0kpi8PBTkOU

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Emotional Disabilities Under the IDEA: The Intersection Between Special Education and Mental Health Issues

Published on May 14, 2013 by Jennifer Laviano

I have been concerned for years about what I see as a growing population of students with mental health concerns who require special education services.  So many times these students, who are often bright, are ignored and not referred for special education services because they perform well on standardized testing.  It is incredibly frustrating!  Please join us on www.yourspecialeducationrights.com on May 15, 2013 at 7:00 p.m. EST for a WebShow with LIVE Question and Answers on this important subject!

UPDATE:  The full WebShow video is now available for viewing at www.yourspecialeducationrights.com.  Membership is free, just check out the link for WebShows!

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Defining Ourselves

Published on March 27, 2013 by Jennifer Laviano

It was with great pride that I became Chair of the Council of Parent Attorneys and Advocates this month.  COPAA is an amazing organization, and the leading national voice on special education advocacy.  Please read this blog post from the COPAA blog about how language matters when it comes to advocating for the Civil Rights of students with disabilities!

It Shouldn’t Be

Published on December 15, 2012 by Jennifer Laviano

Newtown, Connecticut.  It’s where I visited my aunt and uncle when I was a little girl.  It’s where I took my niece to see March of the Penguins when I was pregnant with my first child.  I drive through Newtown several times a week.  I have eaten in its restaurants. I’ve shopped in its stores.  I’ve represented many of its children.

It shouldn’t be.

A rare in-office Friday, packed with phone calls.  My cell starts going off with texts and voicemail.  My sisters.  My mom.  ”Tell me you’re not in an IEP meeting in Newtown today!”  Not today.  Why?  Shootings.  At an elementary school.  In Newtown.   My brain goes into overdrive.  Newtown cases, where are those kids.  Which schools?  Which elementary schools?  Does it matter?  Siblings.  Friends.  Neighbors.  Innocents.

It shouldn’t be.

My assistant and I start to cry.  We talk to family.  We search the Internet for news, or something like it.  The call comes from my daughter’s school.  She is 6.  They are on heightened alert, a State Trooper outside, doors locked. all safe, no outside recess today.   All schools in the area are doing the same in case there’s another shooter on the loose.  A shooter who might be targeting elementary schools.

It shouldn’t be.

The news is initially conflicting.  ”The target appears to be the principal.”  Then “a shooter with connections to the school.”  My mind races.  Sadly, I’ve seen more anger and volatility in school districts than you can imagine among so many of the possible people “with connections to the school.”  Nightmare scenarios abound.

It shouldn’t be.

The news  goes from terrifying to unthinkable.  A kindergarten classroom.   Mostly children dead.  As many as a dozen?  More than a dozen?  My friends, neighbors, family with so many connections to this horror.  Newtown friends and clients.  First responders.  My dear friends in the Danbury ER.

It shouldn’t be.

The debates begin.  Gun control.  Mental illness.  Speculation about the shooter.  My brain hurts with the memories.  All the memories of all the meetings over all the years of frantic parents, having to fight so many systems to get their kids help.  Kids with mental illness who are in crisis.  ”My kid needs help.  Lots of help.  Therapeutic services, throughout the day.”  The insurance company responds:  ”Oh, during the day you say?  Well, that’s an educational issue.”  Okay, let’s go to the school district.  ”Mental Health services, you say?  So sorry, that’s medical.”  Services denied.  Crisis not averted.

It shouldn’t be easier to access guns than mental health services.

How about this for an idea?  Let’s take all of that money we’re spending on the clearly failed and so-called “War on Drugs,” and use it to finally fully-fund the IDEA.   This must stop.  The lives of ALL of our children depend on it.

VIDEO: Asking for an Independent Educational Evaluation

Published on November 13, 2012 by Jennifer Laviano

Years in the making, Your Special Education Rights.com is a video-based website we’ve created to help parents understand their rights.  Check us out at www.yourspecialeducationrights.com; we’d love it if you subscribed!

Meanwhile, please watch the first of a series we’re making of simulated IEP Team Meetings, with tips from Julie Swanson and me along the way:

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CT Parents of Students with Disabilities: Vote Murphy

Published on October 14, 2012 by Jennifer Laviano

I don’t need to remind you that it’s election season.

Even though Connecticut is not a “swing State,” and therefore somewhat disconnected from the deluge of Presidential campaign commercials, this has not prevented us from the constant onslaught of Linda McMahon commercials, robocalls, and mailers. My understanding is that her campaign for Senate is a $70 million dollar endeavor; more than ever spent on a Senate campaign in United States history. Ever.

Somehow this doesn’t call up the phrase “public servant” in my book.

But this post is not about Linda McMahon. It’s about Chris Murphy, and why I firmly believe that Connecticut parents of children with disabilities should vote for him.  Just in case you’re a parent of a child with special education needs and you don’t think who represents Connecticut in the Senate matters to your child’s life, I must tell you how much it does.

Important federal legislative initiatives impacting special education and children with disabilities are on the horizon, affecting everything from whether, how and when children with disabilities can be restrained in schools, to who should have to pay for evaluations when parents disagree with their school district’s testing.

Most importantly, the IDEA, our federal special education landmark legislation, is due for Reauthorization by Congress.

Who is sitting in the Senate when that happens will make a dramatic difference in whether we have strong federal protections for children with disabilities, or not.

I have often said that one of the biggest obstacles to progress in the fight for justice for children with disabilities is the lack of concern of those who are not personally touched by the subject. While I have many close relatives and friends who are touched by disability, I was not drawn to this field because of a personal experience with disability. Rather, I became enlightened to disability issues after I had already become invested in the profession of special education advocacy.

In that capacity, I have encountered thousands of parents of children with disabilities over the years, and many have said to me “thank you for doing what you do; I have to care about these issues because of my child, but you choose to care.” Honestly, while I appreciate the gratitude, I am ashamed when I hear it, because my instinctive response is “why should I be thanked for caring about something so important? EVERYBODY should care about something this important!”

But they don’t.

And so this leads me to Chris Murphy. I have had the honor of knowing Congressman Murphy tangentially as a person in the small Connecticut community of “movers and shakers” who actually care about special education advocacy, and who recognize its impact on the daily lives of children, adolescents, and eventually adults with disabilities. Chris Murphy’s reputation precedes him as someone who children’s advocates know “gets it.” He has routinely demonstrated that children with disabilities should be, and will be, a priority in his mind.

Did you know that Chris Murphy’s wife is a special education attorney?

Cathy Holahan is one of the smartest, universally respected attorneys in Connecticut, whose representation of children has been stellar. And guess what? She isn’t in private practice. She’s done this as part of Connecticut Legal Services. That means she’s helping the least powerful families, with little access to the “system,” if it weren’t for people like her. When my clients in my private special education practice ask me “what do parents of children who can’t afford to hire a Jen Laviano do?” I say “they hope they qualify for Legal Aid and they hope they get someone who knows what they’re doing.” Someone like Chris Murphy’s wife, Cathy.

Now THAT’S a public servant.

I have served on a few panels with Cathy over the years, but we don’t know each other well. I have been honored to participate in a panel by Autism Speaks moderated by Congressman Murphy, but I don’t know him well either. Here’s what I do know. Every day of these two public servants’ lives involves care, consideration, and UNDERSTANDING of the battles that our children with special education needs, and their parents, face.

They get it.

And you can’t buy that.

Not even with $70 million.

A Decade Without Bill

Published on June 21, 2012 by Jennifer Laviano

Ten years ago today, my dad, William “Bill” Laviano, died.  I have written about him before, and his profound influence on me and on special education advocacy in Connecticut.  As this sad anniversary has been approaching, I’ve been trying to think of something to write that will appropriately honor him.  I’ve been looking for inspiration, which, let’s face it, is rather hard to come by during IEP season.  In fact, most days from April through June I’m happy if I avoid the increasingly strong urge in IEP meetings to scream, cry, laugh, or all of the above.

So inspiration?  Not likely in June.

Then came Father’s Day.  It’s always a bittersweet day.  This year, the kids and I got up early, and I had the brilliant idea that I should let my husband sleep in, and bring him breakfast in bed.  The girls and I set about making eggs and bacon.  Now, you need to know that my husband does all of the cooking in our house, and with good reason.  You also need to know that this was the first time I had ever tried to cook bacon.  And yes, I am forty-one years old.  Long story short, instead of waking up to breakfast in bed, my husband woke up to the smoke detector going off.  I had to laugh at myself, because trust me, everyone else was.

The next day brought the inspiration.   It was my older daughter’s last day of kindergarten.  As we were talking about the summer, a conversation about bike-riding and training wheels somehow ended up in a discussion about wheelchairs and equipment, during which I mentioned the word “disability.”  She asked me “what is a disability again?”  This isn’t the first time we have talked about disability.

I see these discussions as gems of opportunity to make her care, so I gave it my best shot.

I said “well, it’s kind of hard to describe, but a disability is when a person’s brain or body makes it harder to do certain things.  We call that a ‘disability.’   Some people have disabilities that are really easy to see, like if a person uses a wheelchair or a cane like grandma used to.  Others have a disability that makes it really hard for them to learn to read.  And other people might have disabilities that make it hard to act or behave the way we expect them to, or to pay attention and concentrate, or to hear or see things like other people.”

She silently listened.  Now came my big finish.

“But honey, please always remember that people with disabilities are just like you and me.  It is important that we treat all people with respect and kindness and to find out what we can learn from them.”   She was quiet for a minute, and then she asked me:  ”mommy, do YOU have any disabilities?” And I said “probably.”  To which my loving daughter responded:  ”you definitely do in cooking.”

And it hit me.  My father’s true legacy lies not in my generation, but in hers.

My father never got to meet my kids.   I constantly wrestle with whose loss is more profound in that scenario, his or theirs.  What I do know is that I feel a greater burden to impart the passion for justice that he had to my children, in his absence.  I remember being a little girl, and the miniseries Roots was originally aired. For our younger readers, this was back when things were actually shown on TV at certain times and if you didn’t see them when it aired, you actually…missed it.  My parents insisted that my sisters and I stay up to watch it.  There is no way to explain how stunning it was to see my big, strong, 400 lb. Italian father cry for the first time in my presence while watching that series. Or how it feels to see your dad well up with tears when reading the First Amendment aloud.  Or to realize that many of the teachers and administrators in your high school have just been cross-examined by your father in a lawsuit in which he was representing the Plaintiffs. There is no way to describe how that impacts a child.  These are just a few examples among hundreds and hundreds in my childhood and adolescence, in which I was taught that the rights of individuals must always be protected, especially if those rights are being threatened by more powerful forces. It was the fabric of my childhood.

As parents, we always worry if we are giving our children what they need.  I am sure my dad wondered that too.

Are we doing the right thing?  Are we imparting the values we care about?  Are we over parenting?  Are we under parenting?   I so wish my dad was around to answer my questions.  I’m sure we would have ended up in a ton of fights about them, but it would have been thought-provoking.  And loud.

We talk about my dad a lot to our children.  We show the girls pictures of him (he is known as “grandpa with the beard”), and to keep him as “real” for them as we can.  We honor his birthday and the anniversary of his death with yahrzeit candles, which is the closest to spiritual ceremony this daughter of lawyers who decided to raise their children without organized religion gets.  We strive to keep his memory and legacy alive.  On cue, my daughters seem to have inherited Bill Laviano’s unconventional approach to almost everything.  When I informed one of them that, like mommy, grandpa was a lawyer, she said, quite seriously, “boys can’t be lawyers!”  He would have loved that one.  And her sister is already able to frame arguments like her grandpa.  When asked how she could possibly want dessert if she was “so, so, so full” that she couldn’t finish her dinner, she responded “but mommy, that was lots and lots of minutes ago.”

I spend all day negotiating with adults, and all evening negotiating with children.  The children are far more effective.

The IDEA is not even 40 years old.  I’ve written before about how far we are from the promise of the Act.  Just yesterday I heard something from a parent that horrified me, and reminded me that even though this is 2012, kids with disabilities are still being discriminated against in so many ways that it’s hard to even calculate.  And I have long since felt that it happens more frequently and pervasively than we discuss or even notice because most people don’t care much about special education unless it impacts them personally.

The trick is to make it matter to everyone.

My girls are being raised to celebrate and embrace differences in “ability,” in learning styles, in personalities and behavior.  I believe they will make their schools and community better places because of that, and that they just might be the ones to speak up when they witness discrimination or bullying.   And you know who will join them?  The growing population of siblings of children with disabilities, who see how their parents have had to battle for their brother or sister’s education, and who will not accept the injustices or the pity of a society who should know better.

THEY will make sure we get it right.

Because as proud as I am of my little girls (and I am), I really don’t want them to have to be the third generation of my family to have to fight this fight.  I hope that by the time they are choosing careers, parents won’t need a special education lawyer to obtain what their child is supposed to be receiving by law.

But if they do, heaven help the other side, because I’m pretty sure Bill Laviano has been whispering in their ears since birth.

“This Doesn’t Happen to People Like Us”

Published on April 12, 2012 by Jennifer Laviano

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You won’t believe this story.

In fact, I didn’t, at first.  As you might expect from a lawyer, I had to be convinced through documentary evidence.  Once I was, I couldn’t wait to share it!

If you read my blog you already know that I’m a pretty jaded and cynical person.  I like to remain positive and upbeat, but it’s hard sometimes, especially during IEP Season.  It’s easy to lose your faith that good will prevail when you’re constantly fighting injustices on behalf of children with disabilities.  This would explain a good deal of my sarcasm as well.

But this week, I am a believer in the kindness of people.

I have a client who, like many of my clients, has gone into a great deal of debt in trying to secure appropriate special education services for their child.  The wheels of justice do not turn swiftly.  Without revealing details that would be inappropriate to share in a public forum, they had incurred nearly $40,000 in fees at a special education program that was doing amazing things for their child, but whose tuition they could no longer afford, and they had to leave the school.  They were demoralized, hopeless and ashamed.

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As it turns out, the mother is a Words with Friends fanatic.  She plays not only with friends, but with “strangers” that the game will arrange as opponents.  If you play enough, you may end up playing the same people repeatedly, especially if you continue to challenge your opponents to a “rematch.”  Over the course of many months, she had played dozens of games with one particular person, with whom she would occasionally “chat.”

Over time, they discovered that they were both the parents of children with disabilities.  My client revealed that she was struggling to make ends meet, pay legal bills and private special education school bills, and that their tuition bill at the one program that had worked for their child remained unpaid.  It was the kind of chat many of us have online these days.

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Recently, the stranger asked my client the name of the private school her daughter had attended; she provided it, not thinking much of it.  Then, piecing together information he’d obtained, he did the unthinkable.

He paid the student’s entire bill to the private school, under the condition that his identity remain anonymous.  Nearly $40,000 paid for a family he’d never met, and would never meet.

It’s hard to believe.  As I said, I didn’t believe it initially.  In fact, my client told me that she and her husband didn’t believe it at first either.  ”This kind of thing doesn’t happen to people like us,” she said.  But it did.  I saw the paperwork.  I saw the letter from the private school confirming the financial contribution of the anonymous donor.  It happened.  To people like them.  All because one parent understood the burdens of another, and was in a position to do something about it.

My clients’ only hope now is to one day be able to “pay it forward” for another child, as this stranger did for her child.

I don’t know about you, but this particular story will get me through for a bit.  Maybe even through IEP season.  Maybe even beyond.  There is goodness in this world.  Sometimes it’s very, very, very hard to find, but it’s there.  That’s going to have to get me through.  That, and a whole lot of Words with Friends.

Fictitious Thinking: The “New” Definition of Autism

Published on January 21, 2012 by Jennifer Laviano

Do you remember the character Cassandra from Greek mythology?  Her curse was that she could accurately predict the future, but nobody would believe her when she warned them about it.

Today I feel like Cassandra.

In 2009, I wrote a blog post about the impending changes to the definition of “autism” in the DSM-V.  I wrote about my concerns about how these changes would likely impact my clients diagnosed with autism spectrum disorders.  Here we are  in 2012, and all over the news this week is coverage about the changes with the DSM-V…and how they could dramatically impact people diagnosed with autism spectrum disorders.

Sometimes I hate being right.

My personal favorite in the coverage were the claims that the change in the diagnosis would effectively “eliminate the autism epidemic.”  Really?  As if all of those medical doctors and clinical psychologists who have been diagnosing kids with ASD all these years were really just seeing something that didn’t exist?

So do I have this right?  All of those kids that are now diagnosed with PDD-NOS or Asperger’s Disorder are going to suddenly wake up next year on the morning after the American Psychiatric Association passes the DSM-V and they will be cured?  Wow.  That’s some power the APA has!  Let’s think of what we want them to cure next!

Okay, so a reminder that eligibility under the IDEA is separate and apart from diagnosis under the DSM.  The definition under the IDEA for autism is what SHOULD govern eligibility determinations until and unless the IDEA revises the definition in the next reauthorization by Congress.

The federal definition of “autism” under IDEA is:

(i) Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.

(ii) Autism does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in paragraph (c)(4) of this section.

(iii) A child who manifests the characteristics of autism after age three could be identified as having autism if the criteria in paragraph (c)(1)(i) of this section are satisfied.

Many states have their own definitions and descriptions as well.

That said, I have no doubt that the change in the DSM will result in loads of kids being denied special education eligibility.  Not to mention the insurance coverage that Autism Speaks has done such an incredible job of securing for kids diagnosed with an autism spectrum disorder.

Individuals who have been diagnosed with ASD have very real needs, no matter WHAT you call the disability!

In the meantime, I suggest that many of you who have children with “High Functioning Autism,” Asperger’s or PDD-NOS become very familiar with the IDEA’s definition of “Other Health Impairment.”  Until the dust settles from the DSM-V, it might be the best route for some of these kids to getting, or continuing to receive, special education services.

The IDEA’s definition of an Other Health Impairment is:

Other health impairment means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that–

(i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and

(ii) Adversely affects a child’s educational performance.

Remember, once a child is found eligible for special education and related services, the eligibility category is not supposed to drive programming; rather, the “unique needs” of the child do.

Between now and next year when the DSM-V is anticipated to go into effect, I’m going to be doing a whole lot of preparation on this subject, and you should too.