The Hill

The West Wing is one of my all time favorite television shows. I also love Scandal, House of Cards, and Madame Secretary….perhaps I watch too much television, but I always imagined any Washington politics I took part in would be written and directed by Aaron Sorkin. Meh, not quite.

Normally, I restrict myself to engaging only in debates that involve facts on topics I know something about. Which is why I did not hesitate to get involved when a friend brought to my attention a piece of legislature regarding education and dyslexia. I am far from an educational guru, but I’m pretty solid with my understanding of neuroscience.

As an admirer of Massachusetts Senator Elizabeth Warren, I was surprised to learn that the senator had voted against the Cassidy Amendment which would have allowed states and school districts to invest federal funds into training programs to help educators understand the early indicators of specific learning disabilities like dyslexia.

Wait! The same Elizabeth Warren who taught special education is not in support of an amendment to help kids with learning disabilities? Say what? This had to be some big fat misunderstanding. What happened?

My friend Jaimee is co-chair of her local Special Education Advisory Council. Most importantly she is the mother of an adorable, out-going, and hilarious eleven year old girl who just so happens to have dyslexia. Jaimee’s daughter actually travels from their home in the Boston burbs all the way to Rhode Island every day for school. Yeah, a very long ride each way, out of state, in order to get the appropriate education she deserves – and a hefty out-of-pocket expense.

Sounds outrageous right? It is! The scenario is hardly uncommon for families of dyslexic kids who can afford to provide private specialty schools like Landmark, Norman Howard and Triad Academy. What’s even more outrageous is that many families who can’t afford private schools are just plain out of luck.

The Devil is in the Details

Certainly schools have a legal responsibility to address the needs of children with specific learning disabilities but it is extremely complicated. Most public schools do their best under the circumstances, but teachers are underpaid, classes are overcrowded and funding cuts seem to happen daily. Now add to that the overwhelming demand to take care of students with learning disabilities and special needs. It’s a mess!

The confusion is compounded by the misuse of descriptive terms. The terms impairmentdisorderdisability, learning disabilityspecific learning disability and special education all have distinct meanings – yet they are frequently used interchangeably.

For example: The very clear-cut legal definition of learning disability and specific learning disability are actually the same. Unfortunately some people incorrectly use the two words ‘learning’ and ‘disability’ when referring to any disability associated with difficulty learning.

The legal definition of disability is explicitly defined in Sec. 300.8 Part C of the Individuals with Disabilities Education Act (IDEA) with a very extensive list of thirteen precisely defined categories including specific learning disabilities – with other categories for autism, deafness, blindness, etc.

Another reason these terms get discombobulated is because policies are regularly evolving from state to state and between school districts – the inconsistencies can be baffling. Confused yet?

Let’s not forget the term special education, according to Sec. 330.39 of IDEA, “special education means specially designed instruction, at no cost to the parents, to meet the unique needs of a child with a disability…”

Getting schools to provide specially designed instruction involves CSEs, IEPs and 504 Plans. There are even special education attorneys who specialize in protecting the rights of children under the Individuals with Disabilities Education Act (IDEA) and Free Appropriate Public Education (FAPE).

How do parents do it? How do single parents do it? Craziness! What about siblings with disabilities? Craziness multiplied!

It’s not a wonder some parents pay for private advocates to help them navigate the system. Parents who can afford it also get their child private testing, private advisors and private tutors which can add up to tens of thousands of dollars annually – not covered by insurance. Then deciding to send that child to a private specialty school means paying tuition – between $35,000 to $65,000 a year. Ouch!

Dyslexia Details

~ Most common specific learning disability – 80% of people with specific learning disabilities have dyslexia.

~ Not a visual processing problem; dyslexia is a language processing problem.

~ Caused by an underdeveloped area on the left side of the brain called the arcuate fasciculus.

~ People with dyslexia are commonly gifted in other areas.

~ People with dyslexia are usually very creative with higher than average intelligence.

~ People with dyslexia learn best from multi-sensory teaching methods.

~ 15% of the population has dyslexia.

~ 74% of children with dyslexia who are not diagnosed by the 2nd grade remain dyslexic into adulthood.

~ Early intervention in kindergarten can improve reading scores before the second grade.

Dyslexia Data

~ Intelligence and dyslexia are not related. (Yale)

~ Development of the language processing center in the brain correlates to reading scores. (MIT)

~ Remediation results can be observed on brain scans. (Stanford)

~ Early intervention can bring faster results. (York)

Up on the Hill

Jaimee made arrangements to visit Senator Warren in search of answers to the Cassidy Amendment decision. She invited me to come along to provide whatever neuroscience wisdom I might have on the topic.

Capitol Hill is every bit as impressive in person as it is on television. After a few selfies and security inspection we located the office and checked in with the Senator’s receptionist. A number of other people occupied the waiting room sitting under pictures of Cape Cod and Nantucket nibbling on complimentary dried cranberries. Is this what real lobbying looks like?

As a shameless New Yorker I found nothing wrong with coming to ask questions of a senator from another state – heck I didn’t vote for her. Truth is, the scientist in me needed to share the irrefutable studies that prove early detection of dyslexia can change the course of a child’s life. I am representing the state of humanity.

Two legislative correspondents came into the lobby to greet us, one for topics on education and the other for topics on health. Where is Liz? Held up in a senatorial filibuster? A luncheon with Hillary? They explained we would need to meet in the hallway because there were no available rooms. It seemed a little strange but they assured us this was normal protocol. Okay then, let’s do this!

Jaimee eloquently presented her viewpoint and questions about dyslexia legislation on behalf of her organization and as a parent advocating for all children. There was even an opportunity for me to chime in about the groundbreaking Boston Children’s Hospital Dyslexia Study and the importance of early intervention.

Finally we flat out asked, what the heck happened with the Cassidy Amendment? They explained that Senator Warren could not support the Cassidy Amendment because it did not benefit all disabilities; supporting the amendment would give unfair privilege to dyslexia over other disabilities.

Time out! That’s like finding the cure to lung cancer but deciding to withhold it from the public until there is a cure for all cancers. It was hard not to laugh at the insanity.

First: Helping dyslexic children would be an unfair privilege? Really? Doesn’t the ‘F’ in FAPE stand for ‘fair’? Well it should!

Second: How does one come to generalize disabilities?

According to the IDEA definition, the term disabilities includes specific learning disabilities, but it also includes orthopedic impairment, autism, traumatic brain injury, deafness, blindness, sickle cell anemia and asthma – most of which are more easily diagnosed than specific learning disabilities.

On the other hand, specific learning disabilities like dyslexia, dysgraphia, and dyspraxia are not usually noticed until later in development when it is too late – the whole point of the Cassidy Amendment is early identification.

Every disability defined in IDEA is blatantly different. Generalizing is inexcusable. Wouldn’t the senator’s correspondents on education and health know this?

So this is politics……it’s totally like House of Cards. Ugh! They got it wrong. Holding back now was not an option. It was time to channel my inner Olivia Pope and speak up…

“Let me clarify: If you can’t help all disabilities you won’t help any? All disabilities are created equal? This is really where the senator stands on this issue?” I was speaking directly to the education correspondent.

“Yes, that’s right, ” he replied biting his pen.

Disappointedly I added, “Just so you know, with that approach no one will benefit. No one.” Then there was an unfortunate silence with a lot of head nodding between all of us.

“I know. I know,” he said nodding his head while still nibbling on his pen. I’m pretty sure I made him nervous, and I’m positive I was old enough to be his mother. I half expected the next word out of his mouth to be “Security!!!” but it was not.

Instead they invited us to meet with the Senator. Now you’re talkin’! It would probably be the equivalent of a walk-by handshake, but it was another chance to be heard…..by the senator. Woo hoo!

Moment of Truth

We were directed to a small conference room where Senator Warren stood in front of a picturesque backdrop of the capital dome. She was talking to a group of young women who were telling her she is inspirational. Jaimee and I realized we would probably have mere seconds to speak to her about dyslexia when suddenly a member of the staff waved for us to step forward.

Elizabeth Warren smiled warmly and literally greeted us with open arms and a familiarity that made it easy to see why she is so well liked. Without missing a beat Jaimee got straight to the point about access to adequate testing and intervention for dyslexia – even slipping in a few words about the financial burden on families and concerns for all children including her own.

As Jaimee spoke a funny thing happened. At the mere mention of the word dyslexia the senator said, “That’s a matter close to my heart,” and she thumped her chest with her fist – ala Celine Dion singing the theme from Titanic at the Academy Awards.

The chest-thump was an interesting choice, albeit awkward to watch. It seemed to come naturally. It was actually kind of impressive to witness. In that thump of a split second I realized – it’s not personal, it’s just politics.

This smart seasoned woman with the best of intentions is a politician. A complicated existence that is far from any reality most of us will ever know. Imagine representing the needs and wants of millions of your constituents? My frustration turned to sympathy. The only constructive thing to do in that moment was make a request.

“There is so much new research to support the benefits of early detection and remediation in dyslexia. The one-size fits all approach to learning disabilities is just not reasonable. Please consider looking at the new data with your staff and reconsider your approach to things like the Cassidy Amendment. Early detection is key.” Did I just say that?

The senator agreed to take another look at the matter and provided names of her staff who could arrange a visit to the labs doing dyslexia research in Boston. Then we thanked her for her time as a staff member gently nudged us toward the door.

Thank goodness there are people who want to be politicians. It can not be an easy life. Just wow.

Debriefing

We walked to the elevators mildly deflated. I felt like a cog in a wheel. Then reality hit me. The opportunity to meet a senate member is one thing, but to speak to her about important topics that could one day bring positive change to the lives of others – that was amazing!

The political process is annoyingly similar to the legal and healthcare systems. Change may take forever, but with perseverance it can happen. There is hope, just don’t hold your breath.

The recurring generalizations of disabilities still irks me. It’s just wrong -they are anatomically, physiologically and legally defined as different. I know Elizabeth Warren will probably never see this, but if she does, there are a few things I would like her to know.

~ I really hope you review all the new studies on dyslexia, and that you take a moment to visit the labs in that great state of yours to see for yourself the progress that can be made.

~ You are wrong to generalize disabilities, but there will be a next time. So please try to remember – knowledge is knowing a tomato is a fruit, wisdom is not putting it in a fruit salad.

~ If you ever run for president I will probably vote for you, unless Hillary is running – then I’ll have to think about it.

Yours truly, Sydology

“Just be wrong. Just stand there in your wrongness and be wrong and get used to it.” – President Jeb Bartlett The West Wing

God bless America. Je suis Charlie!

Have a happy healthy everything!