[Senate Hearing 114-759]
[From the U.S. Government Publishing Office]
S. Hrg. 114-759
UNDERSTANDING DYSLEXIA: THE INTERSECTION OF SCIENTIFIC RESEARCH AND
EDUCATION
=======================================================================
HEARING
OF THE
COMMITTEE ON HEALTH, EDUCATION,
LABOR, AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED FOURTEENTH CONGRESS
SECOND SESSION
ON
EXAMINING UNDERSTANDING DYSLEXIA, FOCUSING ON THE INTERSECTION OF
SCIENTIFIC RESEARCH AND EDUCATION
__________
MAY 10, 2016
__________
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Pensions
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COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS
LAMAR ALEXANDER, Tennessee, Chairman
MICHAEL B. ENZI, Wyoming PATTY MURRAY, Washington
RICHARD BURR, North Carolina BARBARA A. MIKULSKI, Maryland
JOHNNY ISAKSON, Georgia BERNARD SANDERS (I), Vermont
RAND PAUL, Kentucky ROBERT P. CASEY, JR., Pennsylvania
SUSAN COLLINS, Maine AL FRANKEN, Minnesota
LISA MURKOWSKI, Alaska MICHAEL F. BENNET, Colorado
MARK KIRK, Illinois SHELDON WHITEHOUSE, Rhode Island
TIM SCOTT, South Carolina TAMMY BALDWIN, Wisconsin
ORRIN G. HATCH, Utah CHRISTOPHER S. MURPHY, Connecticut
PAT ROBERTS, Kansas ELIZABETH WARREN, Massachusetts
BILL CASSIDY, M.D., Louisiana
David P. Cleary, Republican Staff Director
Lindsey Ward Seidman, Republican Deputy Staff Director
Evan Schatz, Minority Staff Director
John Righter, Minority Deputy Staff Director
(ii)
C O N T E N T S
__________
STATEMENTS
TUESDAY, MAY 10, 2016
Page
Committee Members
Cassidy, Hon. Bill, a U.S. Senator from the State of Louisiana,
opening statement.............................................. 1
Mikulski, Hon Barbara A., a U.S. Senator from the State of
Maryland....................................................... 4
Bennet, Hon. Michael F., a U.S. Senator from the State of
Colorado....................................................... 43
Murphy, Hon. Christopher, a U.S. Senator from the State of
Connecticut.................................................... 45
Warren, Hon. Elizabeth, a U.S. Senator from the State of
Massachusetts.................................................. 47
Casey, Hon. Robert P., Jr., a U.S. Senator from the State of
Pennsylvania................................................... 48
Witnesses
Shaywitz, Sally, M.D., Co-Director, Yale Center For Dyslexia and
Creativity, Yale University School of Medicine, New Haven, CT.. 7
Prepared statement........................................... 8
Baraka, Ameer, Author/Actor, Terrytown, LA....................... 16
Prepared statement........................................... 18
Eden, Guinevere, D. Phil., Director, Center for the Study of
Learning, Georgetown University Medical Center, Washington, DC. 19
Prepared statement........................................... 21
Boies, David, Chairman, Boies, Schiller, and Flexner, LLP,
Armonk, NY..................................................... 24
Prepared statement........................................... 25
Mahone, Mark, Ph.D., ABPP, Director, Department of
Neuropsychology, Kennedy Krieger Institute, Baltimore, MD...... 27
Prepared statement........................................... 29
Hanrath, April, Parent, Salt Lake City, UT....................... 36
Prepared statement........................................... 38
ADDITIONAL MATERIAL
Statements, articles, publications, letters, etc.
Response to questions of Senator Sanders by:
David Boies.............................................. 57
Mark Mahone, Ph.D., ABPP................................. 58
April Hanrath............................................ 60
Response to questions of Senator Casey by Guinevere Eden,
D.Phil..................................................... 62
(iii)
UNDERSTANDING DYSLEXIA: THE INTERSECTION OF SCIENTIFIC RESEARCH AND
EDUCATION
----------
TUESDAY, MAY 10, 2016
U.S. Senate,
Committee on Health, Education, Labor, and Pensions,
Washington, DC.
The committee met, pursuant to notice, at 10:08 a.m., in
room SD-430, Dirksen Senate Office Building, Hon. Bill Cassidy
presiding.
Present: Senators Cassidy, Mikulski, Burr, Scott, Casey,
Bennet, Murphy, and Warren.
Opening Statement of Senator Cassidy
Senator Cassidy. The Senate Committee on Health, Education,
Labor, and Pensions will please come to order. Welcome to all.
Thank you for being here.
Let me remark that Senator Bennett's funeral is this
morning. So we've lost some of our colleagues who will be
attending the funeral. Senator Hatch, who asked that I would
note that he's going to be in Utah attending former Senator
Bennett's funeral and wished he could be here and regrets that
he cannot be here to introduce Ms. Hanrath. Under the
circumstances, we understand.
This morning, we're having a hearing titled Understanding
Dyslexia: The Intersection of Scientific Research & Education
that, hopefully, will raise awareness and educate us on
dyslexia, highlighting the importance of early identification
of students with dyslexia, and ensuring that such students have
access to evidence-based resources.
Senator Mikulski and I will each make an opening statement,
and then introduce our panel of witnesses. Each panelist will
have 5 minutes to summarize your testimony. We have a timer in
front of you. Green light is go, yellow means you have 1 minute
left, and red means I'm going to start pounding with my gavel.
After our witnesses' testimony, Senators will each have 5
minutes to ask questions.
I am pleased to chair this hearing, and, again, I thank
Senator Mikulski for co-chairing. I also thank my other
colleagues who were in support of having this hearing.
We're discussing dyslexia, an issue very important to me,
both as the parent of a dyslexic child and as a Senator. We
have a great lineup of witnesses, including those who have
personally addressed dyslexia.
Ameer Baraka, who is a friend, will speak about growing up
with unrecognized dyslexia, without resources, but overcoming
and eventually becoming an actor; David Boies, who overcame
dyslexia, entering the most language-based of all professions,
law; and Ms. Hanrath will speak of her daughter, who has been
quite successful, but from the mother's perspective. Thank you,
Ms. Hanrath.
There's a common thread in each family's testimony: a child
who struggles to read and cannot. Often, the parent was
dyslexic, too, and they relate. But a child frustrated by their
inability to read, if a boy, acts out. If it's a girl, she
becomes shy, embarrassed to read aloud in class. Afraid of
being mocked. Think about the teacher who has that bright child
struggling to read, but does not have the training or resources
to help that child become the better student and achieve their
fuller potential.
In October of last year, Senator Mikulski and I sponsored
and the Senate passed a resolution that defined dyslexia as a,
``unexpected difficulty in reading, highlighted by a gap
between the individual's intelligence and their reading
level.'' It's the bright child who doesn't read commensurate
with their brightness. Put simply, in non-dyslexics, IQ and
reading tend to track along the same line. In dyslexics, IQ is
higher, and reading ability is lower.
Dyslexia is the most common learning disability, many will
mention. According to NIH sponsored research, nearly 20 percent
of us have dyslexia, whether you're watching on TV, in this
room, in Congress, in your workplace. It's from all walks of
life. The impact of dyslexia on an individual, a family, a
school, and our society is tremendous.
What if I told you that by effectively addressing dyslexia,
we could further prison reform by identifying students with
dyslexia and providing science-based interventions? Or that we
could get more bang from our Federal investments in education?
Or that we could reach into the classroom and change the
interaction between a dyslexic student and a frustrated teacher
to a relationship between a learning, productive student and a
fulfilled teacher?
The goals of this hearing are simple: to raise awareness of
the scope and scale of dyslexia; to increase awareness of what
precisely dyslexia is, as defined by science; and to highlight
the importance of early identification of those who are
dyslexic and giving these children the necessary evidence-based
resources needed to succeed in school and beyond.
There are great schools for children with dyslexia, almost
all of which are private, and if you can't afford the $10,000
to $50,000 a year, a family's options are limited. If the
family is less wealthy, quite likely, they cannot afford to
have their child's needs met. Perhaps that's the one thing that
should be taken from this hearing. There's a correlation
between your ability to have your child's needs accommodated
and your wealth, and that's not good.
We've heard testimony from Governors, superintendents, and
other school administrators that screening for dyslexia is not
happening. Your child may be dyslexic, and it may not be
discovered, despite the fact that we'll hear from Dr. Shaywitz
that the achievement gap between a dyslexic and a typical
reader is evident as early as first grade, and the gap
continues into adolescence.
There are three public charter schools in the Nation that
specializes in teaching dyslexics. I'm proud to say two are in
Louisiana, the Louisiana Key Academy in Baton Rouge and the Max
Charter School in Thibodaux. Parents choose to send their child
to these schools, the goal being for the child to transition to
a traditional public school as their reading difficulty is
addressed.
There are also colleges that accommodate for students with
dyslexia. Nicholls State University has the Louisiana Center
for Dyslexia and Related Learning Disorders. I think Senator
Alexander has a school in his State of Tennessee.
I mentioned about how addressing dyslexia can greatly
impact the rates of incarceration. We know that many who are
incarcerated are functionally illiterate. A study at the Texas
State Prison in Huntsville found that 80 percent of prison
inmates were functionally illiterate and 48 percent dyslexic.
The prevalence of dyslexia is 20 percent in the general
population and 48 percent in the incarcerated population. If
appropriate science-based strategies to teach and treat
dyslexia are instituted, the effect on our future prison
population could be profound.
Let me say, with all of this, there's been progress. Last
year, Senator Mikulski and I sponsored a bipartisan Senate
resolution which passed that calls on Congress, schools, and
State and local educational agencies to recognize the
significant educational implications of dyslexia that must be
addressed. It also designated October 2015 as the National
Dyslexia Awareness Month. We will reintroduce this resolution
this year.
Representative Lamar Smith's Research Excellence and
Advancements in Dyslexia Act, or the READ Act, ensures the
National Science Foundation has dedicated funding for dyslexia
research, and this past Congress was signed into law. The Every
Student Succeeds Act creates a dyslexia-focused comprehensive
center providing evidence-based resources for identifying
students struggling with reading and the appropriate
interventions to States, school districts, teachers, and
parents.
Last, the U.S. Department of Education's Office of Special
Education and Rehabilitative Services issued a Dear Colleague
letter that specifically clarifies that nothing in Federal law
prohibits the use of the word, dyslexia, in evaluation,
eligibility determinations, and an individualized education
program, or IEP, for students. Anecdotally, however, State and
local educational agencies are still reluctant to specifically
reference the word, dyslexia, denying dyslexics the specific
services they need to succeed.
I hope these efforts are the first of many steps in the
right direction. We've made great progress in the area of
learning disabilities. We've seen that conditions like autism
and dyslexia can be specifically diagnosed and that there are
science-based interventions. We must continue efforts that all
learning disabilities have the same science-based intervention.
If there's a call to action in this hearing, it's that
science should begin driving policy. We have the dots. Now
let's connect them.
I will now yield to Senator Mikulski for her opening
statement.
Opening Statement of Senator Mikulski
Senator Mikulski. Thank you very much, Senator Cassidy. I'm
delighted to co-chair this hearing with you on this very
important issue of dyslexia. It's important to both you and I,
it's important to the Congress, and it's surely important to
the Nation. I would like to thank Senator Alexander, the
Chairman, and the Ranking Member, Senator Murray, for allowing
us to hold this hearing today and to focus on dyslexia and the
understanding of it and the intersection of scientific research
and education.
This is a very interesting hearing at many different
levels. First of all, we're co-chairing. That, in and of
itself, is very different, and the fact is that we see each
other as, really, not a Democrat or a Republican, but we see
each other as advocates for children and children who need
special attention, and then what type of special education they
need.
The second thing is that within the realm of Congress and
the prickly atmosphere we sometimes find with each other, we
would be regarded as an odd couple, because Senator Cassidy and
I come from different parts of the country, we come from
different political parties, and, occasionally, on our votes,
even different political philosophies. Again, in this room, in
this committee, we are focusing on the needs of children, and
that doesn't know politics. It doesn't know the lines that
separate us or divide us. Senator Cassidy is a physician. I'm a
social worker. We bring those kinds of attitudes and skills to
this table.
We look forward to hearing from our witnesses, and you
should know that this will be a hearing where we really want to
engage in a conversation with you on how we can best help these
children that are facing these challenges. This won't be a
harass and a harangue hearing. This will be an informational
dialog, and I look forward to doing this.
I regard each and every one of you as experts at the table
who come from very esteemed academic centers of excellence,
Yale, Georgetown, Hopkins, Kennedy Krieger. There are other
great centers of learning, and they're called the streets and
neighborhoods where kids grow up, because as they face
challenges, their education comes from the street.
The first teacher and the first learning center is in the
home, and that's why it's so important that we hear from a
parent who has actually lived these issues and tried to cope
with the issues as well as how to get the best plan and the
best opportunity. All of you are experts in different ways.
We expect a lot from our teachers, and I would like to
salute our teachers. As we worked so hard on the Elementary and
Secondary Education and No Child Left Behind and now our latest
version of that, we believe that every problem could be solved
if we had a highly qualified teacher in the classroom. We need
highly qualified teachers in the classroom. There's no doubt
about it. When a child walks into that classroom, the child
brings a lot. They bring a lot from the home, their family
history, their social situation, and so on. We expect a lot of
our teacher, but the teacher should begin to expect some things
of the larger community.
I support the schools with children who are trying to do
the famous individual education plans. I forget how all those
acronyms come together. The fact is this. You can have the best
plan, but unless you can operationalize that plan, what does it
mean? Because of the very nature of the unfunded mandate, where
we only pay 10 percent of special education funding, and then
we argue over title II and how we can even provide additional
training for our teachers, school systems are hard pressed to
have that individual education plan and to be able to
operationalize it.
Today is not a day to talk about budgets. Today is a day to
talk about children and science. But I do bring to your
attention that special education is an unfunded Federal
mandate, and we need to come to grips with that, and we need to
come to grips with it across party lines, because I think one
area that we could agree upon is that we should fund that and
meet our obligation so that States and then local school
systems could do what we told them to do. I urge my colleagues
to think about that as part of an action plan.
Today is about dyslexia, a lifelong condition that affects
the way the brain processes written and spoken language. It's
considered the most important learning disability. I know that
Senator Cassidy has gone into a lot of the information and a
lot of the data that I won't say again.
The recent report from the National Center for Learning
Disabilities highlights the many challenges our country faces
when trying to meet the needs with dyslexia and other learning
disabilities. These challenges include a lack of awareness and
understanding among educators and even healthcare
professionals, a lack of teacher training when they're in
schools learning how to be teachers and then in the mentorship,
and then a lack of scientifically based reading interventions
and a lack of resources to accommodate it.
Today, I want to listen to the experts, those that are from
officially designated learning centers, but also those that
have been in the streets and neighborhoods and lived the life
of being challenged by dyslexia, those who have been a mother
trying to be on the phone, trying to be in the chat room, and
trying to do everything that she could to make sure that her
daughter had a fair shot at following her dreams and her
passions.
I want to thank you for your consistent leadership and I
look forward to hearing this testimony.
Senator Cassidy. I'll now defer to Senator Murphy to
introduce Dr. Shaywitz.
Senator Murphy. Thank you very much. I'm eager to get to
the testimony as well. I may have to step out to another
hearing and come back. I'm very excited to introduce the expert
of experts at the end of the table which is Dr. Sally Shaywitz
from Yale University where she is the Audrey Ratner Professor
in Learning Development at the Yale School of Medicine.
She has a long list of titles, including the Co-Director of
the Yale Center for Dyslexia and Creativity. She's one of the
leading researchers in this field, and as a physician, her
research focus really has been on neurobiology and
epidemiology, providing a scientific basis for understanding
dyslexia. She has written more than 200 journal articles and
chapters in books on this topic. I know that she is a great
source of counsel for both the Chairman of this hearing and
myself, and I'm glad to have Dr. Shaywitz with us.
Senator Cassidy. I'll introduce Mr. Baraka. Ameer is an
actor and author from New Orleans who struggled to read his
whole life. He didn't learn that he was dyslexic until age 23
and incarcerated. In prison, he earned his GED and was
empowered to influence youth who struggled the same way as he.
I'm eager to hear how he has used his stardom--he is now an
actor--to steer children off the path to incarceration.
I'll defer to you, Senator Mikulski, to introduce Dr. Eden
and Dr. Mahone.
Senator Mikulski. I'd like to introduce Dr. Guinevere Eden.
She is considered to be a nationally recognized expert in
dyslexia research and one of the very first to use brain
imaging and MRIs to better understand the neurological basis
for dyslexia. She's been supported both by NIH and NSF and
currently directs the Center for the Study of Learning at
Georgetown. She continues to investigate while she is actively
involved in teaching graduate students, investigating all the
sensory processes related to reading and how these may be
different in individuals. She's going to bring a lot to us.
We also have Dr. Mark Mahone, who is a Baltimore guy
through and through. He grew up in a neighborhood called
Dundalk, which was very close to the one where I grew up. He's
a pediatric neuropsychologist, and he is at the esteemed
Kennedy Krieger Institute in Baltimore. This is an institution
internationally recognized and dedicated to improving the lives
of those, particularly children, with brain and other
challenges.
What Dr. Mahone does is provide clinical services for young
kids with neurodevelopment disorders, works on the training of
psychologists and educators and physicians on these issues, and
really is an expert on involving the study of brain behaviors
in children with or without these neurodevelopment disorders.
He currently serves as the Co-Director of the Center for
Innovation and Leadership in Special Education, and he brings
really great knowledge about what the children need, but what
the systems that are supposed to help the children need to do.
I'm very proud to bring he and Dr. Eden to the committee's
attention.
Senator Cassidy. I'll next introduce David Boies, who is
the Chairman of Boies, Schiller, and Flexner. He has been
selected as one of the 100 most influential people in the world
by Time magazine in 2010. He has been named Global
International Litigator of the Year by Who's Who Legal an
unprecedented seven times and has received many prestigious
awards and numerous honorary degrees. Mr. Boies is a former
Hill staffer, having served as Chief Counsel and Staff Director
for the Senate Antitrust Subcommittee and the Senate Judiciary
Committee.
Thank you, Mr. Boies.
And, last, Ms. April Hanrath, a small business owner and a
single mom of two adopted children from Salt Lake City. Ms.
Hanrath has been recognized as a child advocate in Utah for her
work on behalf of children like her daughter, Jocelyn, who is
behind her, who has dyslexia and other learning disabilities.
She is a parent advocate with Understood, at
www.understood.org, and attended the University of Utah before
taking over the family business.
Thank you all, and now I'll ask Dr. Shaywitz to begin her
testimony and the rest to follow in order.
STATEMENT OF SALLY SHAYWITZ, M.D., CO-DIRECTOR, YALE CENTER FOR
DYSLEXIA AND CREATIVITY, YALE UNIVERSITY SCHOOL OF MEDICINE,
NEW HAVEN, CT
Dr. Shaywitz. Thank you. Good morning, Senator Cassidy,
Senator Mikulski, and other committee members. Thank you for
the opportunity to speak with you about the science of dyslexia
and share with you the tremendous scientific progress that has
been made in dyslexia and its important implications for
education.
The problem: Our Nation is in the midst of a national
nightmare where substantial numbers of children are not
learning to read, especially boys and girls from disadvantaged
families. Just released, 2015 data from NAEP--I'm going to be
showing a number of slides, and it would be helpful if people
could see it.
[Slides Shown]
Senator Mikulski. We're looking at it right here.
Senator Cassidy. We see it on the TV.
Dr. Shaywitz. Oh, great.
Senator Mikulski. Are you going to give us the NAEP 2015
High School Reading Scores? We've got it.
Dr. Shaywitz. Great. Just released 2015 data from NAEP, the
Nation's report card, sends a loud warning signal. Here,
outlined in yellow, the lowest achievers show large declines in
reading, and, most alarming, the greatest drop in reading in
two decades occurs, between 2013 and 2015.
Reactions from experts: We're stalled. We're not making any
progress. We need something substantially different. Increasing
scientific evidence strongly points to dyslexia as the
explanation and potential solution to our education crisis.
As shown here, dyslexia puts all the pieces together.
Dyslexia represents 80 percent to 90 percent of all learning
disabilities and differs markedly from all others in that
dyslexia is very specific and scientifically valid. Dyslexia is
very common, affecting one out of five.
Initial descriptions of dyslexia as an unexpected
difficulty in reading are today empirically validated. A major
step forward is Cassidy-Mikulski Resolution 275, providing a
21st century definition of dyslexia incorporating scientific
advances in dyslexia, especially its unexpected nature, and
emphasizes the cognitive basis of dyslexia, difficulty getting
the individual sounds of spoken language. It is not seeing
words backward.
Resolution 275 represents a landmark in aligning science
and education. Dyslexia is a paradox. The same slow reader is
often a very fast and able thinker, giving rise to our
conceptual model of dyslexia as a weakness in getting the
sounds of words surrounded by a sea of strengths in higher
level thinking processes.
Converging evidence has identified a neural signature for
dyslexia. That is an inefficient functioning of those posterior
left hemisphere reading systems. Our ongoing studies examine
disruptions in brain connectivity in dyslexia, the role of
attentional mechanisms in reading, and the economic
consequences of dyslexia.
Dyslexia is real. However, imaging cannot be used to
diagnose individuals. The achievement gap between typical and
dyslexic readers is large, occurs as early as first grade, and
persists. Dyslexia has often dire consequences. Dyslexic
students drop out of school at a significantly greater rate
than their typically reading peers. As a consequence, they are
often doomed to higher unemployment, lower earnings, and, as
you heard from Senator Cassidy a few minutes ago, almost 50
percent of prison inmates are dyslexic.
In aligning education with science, certain principles
emerge. One, given its high prevalence and scientific validity
and harsh impact, dyslexia must be given prominence in
reauthorization of IDEA. Schools must screen for and identify
dyslexic students early. The dyslexic student should know his
diagnosis and that he is smart.
Moving forward, implementation requires a model
incorporating 21st century scientific knowledge about dyslexia
as shown in this slide: a school climate where everyone is on
board, and the word, dyslexia, is used; small classes;
evidence-based methods; et cetera.
Where can this model be found? Independent schools for
dyslexic students, for example, the Windward School in New
York. However, the tuition is $52,000, a tuition out of reach
of most middle class and certainly disadvantaged children.
Public charter schools--a new model serving dyslexic students.
An example is the Louisiana Key Academy, LKA, in Baton Rouge.
Schools like LKA bring a quality and hope to all dyslexic
children so that disadvantaged children are no longer left
behind.
I always think of people who are dyslexic--it reminds me of
an iceberg, where you just see 10 percent--and we see the
people who have succeeded, including my hero, David Boies, who
is seated at this table--but we forget about the 90 percent
that are unseen that are asking for help and could benefit from
help.
Thank you.
[The prepared statement of Dr. Shaywitz follows:]
Prepared Statement of Sally Shaywitz, M.D.
Understanding Dyslexia: The Intersection of Scientific Research
& Education
dyslexia: explanation and potential solution to the educational crisis
Good morning Senator Cassidy, Senator Mikulski, and other committee
members. Thank you for the opportunity to speak with you about the
science of dyslexia and share with you the tremendous scientific
progress that has been made in dyslexia and its important implications
for education.
the problem
Our Nation is in the midst of a national nightmare where
substantial numbers of children are not learning to read, especially
boys and girls from disadvantaged families.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
(Slide 1) Just released 20015 data from NAEEP, the Nation's report
card, sends a loud warning signal.
Here on the lower right--the lowest achievers show large declines
in reading and, most alarming, the greatest drop in reading occurs
between 2013 and 2015. Reactions from experts: ``We're stalled . . .''
``We're not making any progress.'' ``We need something substantially
different . . .''
Increasing scientific evidence strongly points to dyslexia as the
explanation and potential solution to our education crisis.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Dyslexia represents 80 percent to 90 percent of all learning
disabilities (Slide 2) and differs markedly from all others in that
dyslexia is very specific and scientifically validated.
Prevalence: Dyslexia is very common, affecting 1 out of 5.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Unexpected Nature: (Slide 3) Initial descriptions of dyslexia as an
``unexpected'' difficulty in reading are today empirically validated.
Cognitive Basis: Dyslexia is a difficulty within the language
system, more specifically, the phonological component of language--it
is not seeing words backwards.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
A major step forward is Cassidy-Mikulski Resolution 275 (Slide 4)
providing a 21st century definition of dyslexia incorporating
scientific advances in dyslexia, especially, its unexpected nature, and
represents a landmark in aligning science and education.
(Slide 5) Dyslexia is a paradox, the same slow reader is often a
very fast and able thinker.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Neurobiology: Converging evidence has identified a neural signature
for dyslexia--(Slide 6) that is, an inefficient functioning of those
posterior, left hemisphere reading systems and (Slide 7) disruptions in
connectivity.
Early identification of dyslexia critical: (Slide 8) The gap
between typical and dyslexic readers is large, present by first grade
and persists.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
High Cost of Dyslexia: Dyslexia has often dire consequences (Slide
9). Dyslexic students drop out of high school at a significantly
greater rate than their typically reading peers.
As a consequence they are doomed to higher unemployment, lower
earnings, and significantly higher rates of anxiety and depression.
Studies indicate that almost 50 percent of prison inmates may be
dyslexic.
In aligning education with science certain principles emerge:
1. Given its high prevalence + scientific validity + harsh impact--
dyslexia must be given prominence in reauthorization of IDEA.
2. Schools must screen and identify dyslexic students early.
3. The dyslexic student should know his diagnosis (dyslexia) and
that he is smart.
Moving forward--Implementation--requires a model incorporating 21st
century scientific knowledge about dyslexia; for example:
School climate--everyone at school on board, use the word
dyslexia.
Small classes.
Evidence-based methods.
Knowledgeable, flexible, caring teachers.
Consistency in instruction across all classes.
A community to join--know they are not alone.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Specific solutions: where can this model be found?
Independent schools for dyslexic students, (Slide 10)
example, the Windward School in New York. (Slide 11).
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Clearly, a tuition out of reach of middle class and disadvantaged
children.
Public Charter Schools serving dyslexic students. (Slide
12) An example is the Louisiana Key Academy in Baton Rouge. (Slide 13)
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
A school like LKA brings equality and hope to all dyslexic children
so that disadvantaged children are no longer left behind. (Slide 14)
Senator Cassidy. Thank you, Dr. Shaywitz.
Mr. Baraka.
STATEMENT OF AMEER BARAKA, AUTHOR/ACTOR, TERRYTOWN, LA
Mr. Baraka. Good morning, Senators and panelists. I want to
thank you for taking your valuable time to listen to my
message. We are coming up on an important Presidential
election, and I know your time is important.
I am also not oblivious to the challenges we face as a
country. One such challenge is the lifelong curse of dyslexia.
One out of five live with this challenge each day of their
lives. Many will never reach their full potential and enjoy
this great country as you and I do. Many people have lost the
will to believe because the enemy, dyslexia, has forced them
into the shadows. Today we have found a new way to address this
enemy once and for all.
For many years, I allowed dyslexia to control my life by
robbing me of my God-given potential. Can you imagine in my
early teens never wanting to be anything but a drug dealer?
Neither my mother nor my school teachers were able to diagnose
the reasons why I had trouble learning. In my mind, pursuing a
more formal education was irrelevant. I knew early in life that
being a dentist, a physical therapist, or a lawyer was out of
my reach because I could not read.
I turned to quicker pathways out of the New Orleans
projects. I saw men in my community making ways for themselves
without having to read by selling drugs. My defeatist attitude
seemed to outweigh the positive values my grandmother tried to
teach me. There were many more ingredients that helped me make
my decision to sell drugs, for example, having my mother and
siblings call me names such as dumb and stupid. Using names
such as these can cause any child to feel hopeless and lost.
You will notice that I never mention my father in this
presentation. That's because he left when I was 3 years old to
chase his dreams of finding a better grade of heroin to use. It
was the perfect storm for me. I chose to succumb to my
environment while both my brother and sister excelled in
school. I didn't care about my future or anyone else, because I
thought I was a dummy like my mother and my siblings said.
I became a street thug and full of anger because I felt
cheated out of an education. I went to school just because I
had to as a kid. Many Fridays, I would malinger because I
couldn't pass the spelling test, or I would sleep in a project
hallway until school was out just to avoid embarrassment. I
pushed myself into a hole, and I couldn't get out of it. My
teachers had to know that I couldn't read. My young mother ran
the streets and didn't seem to value my education.
What became the final thing that caused me to pledge my
allegiance to the lies of the streets was a girl. I was in
sixth grade and a girl I liked was in my class. It was our
first week of school. We were in English class and the teacher
called on me to read out loud. My palms began to sweat. It felt
like drops of blood on my forehead. I couldn't pronounce any of
the words and the teacher made me continue, knowing I couldn't
read. Some students laughed while others looked in amazement.
From that day forward, I knew that school wasn't the place
for me, and the young lady never really liked me much from that
day forward. The streets became my classroom, and looking back,
the lessons I learned were shameful. I shot and killed a young
person because the streets taught me that that is how you
resolve conflict. After my release from prison at 15 years of
age for manslaughter, I got back into the drug game, still
never learning to read. I ended up doing prison time as an
adult.
I ran from the law for 4 years as a fugitive because I was
facing 60 years for drug distribution and I was guilty. I ended
up doing 4 years because, by God's grace, a jury found me
guilty of a lesser charge. At age 23, I entered into a prison
correctional facility reading at a third grade level. I didn't
feel so bad because many of the men there were just like me. We
all read poorly. After reading the autobiography of Malcolm X,
I discovered that he dropped out in seventh grade and still
made something of himself. I thought for the first time in my
life that I could accomplish something too. I worked hard,
writing down each word I couldn't pronounce. I just kept
memorizing words and writing letters and reading short books.
A GED teacher noticed that I struggled with phonics and had
me tested. He asked if my siblings could read. I told him that
my siblings went to college. After testing me, he said I had a
reading disability and it could be corrected if I was willing
to work hard. I would write words down wrong so I sat in the
front of class and double checked my answers. I worked for 4
years trying to attain my GED. My reading ability surged and I
was ready for the test. I passed and started helping others in
math and vocabulary.
Since my release from prison, I went on to model for
clothing lines such as Nike. Also, I went to acting classes and
worked with Academy Award winners Jessica Lange, Kathy Bates,
Angela Bassett, Forest Whitaker, Blair Underwood, Hill Harper,
and many others. I have produced four independent films and
written my first book titled The Life I Chose: The Streets Lied
to Me. It is meant to inspire others who are just like I was,
hiding in the shadows and not getting help. It is also for
those who believe that dealing drugs is a way out. Today there
are schools available to help kids fight and dyslexia, schools
like the Cassidys have.
Thank you for your time and consideration.
[The prepared statement of Mr. Baraka follows:]
Prepared Statement of Ameer Baraka
Good morning Senators. I want to thank you for taking your valuable
time to listen to my message. We are coming upon an important
presidential election and I know your time is important. I'm also not
oblivious to the challenges we face as a country. One such challenge is
the life-long curse of dyslexia. One out of five people live with this
challenge each day of their lives, so many will never reach their full
potential and enjoy this great country as you and I do. Many people
have lost the will to believe because the enemy, dyslexia, has forced
them into the shadows. But today we have found a new way to address
this enemy once and for all.
For many years, I allowed dyslexia to control my life and rob me of
my God-given potential. Can you imagine in your early teens never
wanting to be anything other than a drug dealer? Neither my mother, nor
my school teachers, were able to diagnose the reasons why I had trouble
learning. In my mind, pursuing more formal education wasn't relevant. I
knew early in life that being a dentist, physical therapist, or lawyer
was out of my reach because I couldn't read. I turned to quicker
pathways out of the New Orleans projects. I saw men in my community
making a way for themselves, without having to read, by selling drugs.
And my defeatist attitude seemed to outweigh the positive values my
grandmother tried to teach me. There were many more ingredients that
helped me make my decision to sell drugs, for example, having my mother
and siblings call me names like ``stupid'' and ``dumb.'' Using names
such as these can cause any child to feel hopeless and lost.
You will notice, I never mention my father in this presentation.
That's because he left when I was 3 years old to chase his dreams of
finding a better grade of heroin to use. It was the perfect storm for
me. I chose to succumb to my environment while both my brother and
sister excelled in school. I didn't care about my future, or anyone
else, because I thought I was a dummy like my mother and siblings said
I was.
I became a street thug and full of anger because I felt cheated out
of an education. I went to school just because I had to as a kid. Many
Fridays, I would ``malinger'' because I couldn't pass the spelling
test, or I would sleep in a project hallway until school was out just
to avoid embarrassment. I pushed myself into a hole that I couldn't get
out of. My teachers had to know that I couldn't read. My young mother
ran the streets and didn't seem to value my education. But what became
the final thing that caused me to pledge my allegiance to the lies of
the streets was a girl. I was in sixth grade and a girl I liked was in
my class. It was the first week of school. We were in English class and
the teacher called on me to read out loud. My palms began to sweat. It
felt like drops of blood on my forehead. I couldn't pronounce any of
the words and the teacher made me continue, knowing I couldn't read.
Some students laughed, while others looked in amazement. From that day
forward, I knew that school wasn't the place for me, and the young
lady, never really liked me much from that day forward. The streets
became my classroom and looking back, the lessons I learned were
shameful. I shot and killed a young person because the streets taught
me that is how you resolve conflict. After my release from prison at 15
years of age for manslaughter, I got back into the drug game, still
never learning to read. I ended up doing prison time as an adult.
I ran from the law for 4 years as a fugitive because I was facing
60 years for distribution of cocaine and I was guilty. I ended up doing
4 years because, by God's grace, a jury found me guilty of a lesser
charge. At age 23, I entered into a prison correctional facility
reading at a third grade level. I didn't feel so bad because many of
the men there were just like me. We all read poorly. But after reading
the Autobiography of Malcolm X and discovering that he dropped out in
seventh grade and still made something of himself, I thought for the
first time in my life that I could accomplish something too. I worked
hard, writing down each word I had trouble pronouncing. I just kept
memorizing words and writing letters and reading short books. A GED
teacher noticed that I struggled with phonics and had me tested. He
asked if my siblings read well. I told him they went to college. After
testing me, he said I had a reading disability and it could be
corrected if I was willing to work hard. I would write things down
wrong so I sat in the front of class and double checked my answers. I
worked for 4 years trying to attain my GED. My reading ability had
surged and I was ready for the test. I passed and started helping
others in math and vocabulary. Since my release from prison, I went on
to model for clothing lines such as Nike. Also, I took acting classes
and worked with Academy Award winners Jessica Lang, Kathy Bates, Angela
Bassett, Forest Whitaker, Blair Underwood, Hill Harper and many others.
I have produced four independent films and written my first book titled
``The Life I Chose: The Streets Lied to Me.'' It is meant to inspire
others who are just like I was, hiding in the shadows and not getting
help. It is for those who believe that dealing drugs is a way out.
Today there are schools available to help kids fight and defeat
dyslexia. Schools, such as the one Senator Cassidy and his wife have
created, provide a model for what could be a solution. In my opinion we
can stop people from allowing the dyslexia to rob them of all that this
great nation has to offer. If we understand this enemy, we can work to
prevent it from stealing our most fundamental asset, our youth. We need
to remember that 1 in 5 has dyslexia and dyslexia is 80 to 90 percent
of the LD or learning disability community. The science about dyslexia,
where the problem is in the brain, may be the key to reversing the
curse of dyslexia that is now plaguing this great country.
Senator Cassidy. Thank you.
Dr. Eden.
STATEMENT OF GUINEVERE EDEN, D.Phil., DIRECTOR, CENTER FOR THE
STUDY OF LEARNING, GEORGETOWN UNIVERSITY MEDICAL CENTER,
WASHINGTON, DC
Ms. Eden. Thank you, Senator Mikulski and Senator Cassidy,
for inviting me to speak to you today. The research I'll be
describing is largely emerged from the field of neuroscience
and uses brain imaging technology to study the brain's
structure and function. This research has resulted in
tremendous advances in our understanding of the human brain,
how it perceives information, how it learns, remembers, builds
knowledge, and how it performs skills that are unique to
humans, such as reading.
Reading, a cultural invention that allows us to represent
speech in symbolic form, involves a coordination of the brain's
language areas with visual and auditory systems. At Georgetown
University, with support from NIH and NSF, we have studied
brain activity with functional MRI while participants process
words. This allows us to noninvasively characterize the
developmental trajectory of reading acquisition in children and
also to understand the brain basis of reading in different
writing systems and in different languages.
Researchers have learned that acquiring reading changes the
brain's structure and function. It is thought that learning to
read involves co-opting of brain regions involved in language
and visual object recognition and that these become recycled
into a reading network. In other words, children's brains
change as they learn to read.
Brain imaging has also heightened our understanding of
dyslexia. The field has grown rapidly and made significant
contributions. It has helped people understand that the brains
of children and adults with dyslexia are different. Their
struggles with reading are not because they are stupid or
because they are not trying hard enough. There is an
explanation for their reading difficulties. There should not be
a stigma.
Researchers have also examined the impact of intensive
reading intervention. We have learned that children and even
adults with dyslexia not only make gains in reading, but also
show measureable brain activity changes and plasticity. One of
our studies has shown that some of the same brain areas that
are used for reading are less engaged when children with
dyslexia solve arithmetic tasks, highlighting the far-reaching
consequences of dyslexia and the connection to other forms of
learning disabilities.
Sometimes we make novel discoveries with brain imaging for
which there are no obvious indicators from behavioral studies.
For example, we found that the brains of females with dyslexia
do not conform to the neurobiological model of dyslexia that
was largely derived from studies in males. This might have
important implications for diagnosing and treating females with
dyslexia.
Dyslexia runs in families, and genetic researchers have
utilized brain imaging to examine the brains of those who carry
the dyslexia associated genes. Taken together, researchers have
made significant advances in characterizing the brain basis of
dyslexia. However, the exact mechanism of dyslexia, how it
comes about, is not yet fully understood and requires further
research. Also, the information gained has not been applied as
well as it could be.
For example, the fact that dyslexia is heritable, with
roughly a 40 percent chance of your child having dyslexia if
you have dyslexia, is greatly underutilized when it comes to
early identification. This critical information is a warning
sign, and there should be a place to note it on the
questionnaire of an entering kindergartner. This, together with
the child's performance on behavioral measures tapping skills
known to predict later reading outcome, such as phonemic
awareness and letter naming, can be used to signal that a
particular child is at risk for difficulties in learning to
read.
On the other hand, imaging is not used to identify the
child who has dyslexia. Brain imaging is used in research
studies involving groups of participants. However, parents
often ask for a brain scan in their child because they see the
difficulties in their child with reading, and they worry that
the school is not recognizing the problem, and they hope that a
brain scan will provide some information.
I understand such parents' quest for objective information
because my own daughter recently had trouble reading and
exhibited anxiety and avoidance around reading, which she
described as a stupid activity. While the school was not
concerned about her gradual decline, I was, and we pursued
early intervention focused on phonemic and orthographic
awareness. Her improvement, measured objectively by
standardized tests, now manifests in her reading for pleasure.
For parents of struggling readers, it's a challenge to
determine if there is a problem and what to do about it.
Parents have to educate themselves and navigate a complex
educational system. They stay up late at night to try and make
sense of the scientific research and how it applies to their
child.
Fortunately, there are resources to support families of
children with learning issues, such as the website,
understood.org. Here, the information is provided online,
accessible to parents and educators, and tied to the findings
of current research. This is one example of how those involved
in understanding dyslexia can engage in a common language.
However, much needs to be done by researchers and educators to
jointly harness the knowledge of teaching and learning to
benefit the children with dyslexia.
Thank you.
[The prepared statement of Ms. Eden follows:]
Prepared Statement of Guinevere F. Eden, D.Phil.
Thank you, Chairman Alexander and Ranking Member Murray, for
holding this hearing and for the invitation to speak to you today about
the intersection of scientific research and education in dyslexia.
Thank you Senator Cassidy and Senator Mikulski for co-chairing today's
hearing.
brain imaging technology: advances in understanding the brain bases
for reading and dyslexia
The research I will be describing today has largely emerged from
the field of neuroscience. The ability for scientists to use brain
imaging technology to non-invasively study the brain's structure and
function has resulted in tremendous advances to the understanding of
the human brain, how it processes sensation, how it learns, how it
remembers, and how it builds knowledge. Neuroscientists have been able
to produce maps of brain regions underlying cognition and, importantly,
skills that are uniquely human, such as reading.
Reading, a cultural invention that allows us to represent speech in
symbolic form, involves a coordination of the brain's language areas
with the visual and auditory systems. At my center at Georgetown
University, we have studied brain activity with functional MRI (fMRI)
while participants process words.\1\ We use this approach to
characterize the developmental trajectory of reading acquisition \2\
and to study reading in different writing systems \3\ and in different
languages.\4\ In the cognitive neuroscientific community, there has
been an explosion in the use of brain imaging for the purpose of
visualizing the reading brain. Unlike other areas of cognition, reading
is a uniquely human skill and cannot be ecologically simulated using
animal models. The non-invasive nature of fMRI allows scientists to
study children (around or even prior to the time that they begin to
read) and to study them repeatedly so that brain changes over time can
be captured.
What researchers have learned is that the process of learning to
read changes the brain's structure and function. People who never had
the opportunity to learn to read manifest a different pattern of brain
activity and have differences in brain anatomy compared to those who do
learn to read.\5\ \6\ It seems that learning to read involves co-opting
of brain regions involved in language and visual object recognition,
and these become ``recycled'' into a ``reading network.'' In other
words, as teachers are bringing about critical literacy skills in
children through formal education, the children's brains change above
and beyond the changes that occur based on maturation.
Research also indicates that the brain needs to make some
adjustments when becoming a reader, not only re-allocating brain
functions from processing common objects to processing letters and
words, but also adapting new rules. So while it is OK for objects, such
as a chair, to be recognizable as the same object when it is viewed
from the right or from the left, this is not OK for mirror letters such
as p and q, and b and d. While these may look like the same object with
mirror-reversal to a beginning reader (who will confuse them),
successful reading acquisition requires that they become recognized as
representing distinctly different letters.\7\
Brain imaging technology has also heightened our understanding of
dyslexia. Since our first implementation of functional MRI to study
dyslexia in 1996,\8\ the field has grown rapidly and made significant
contributions to the science of dyslexia. While researchers had already
been using MRI to scrutinize brain structural differences in dyslexia,
functional MRI has allowed researchers to visualize brain activity in
groups of people with and without dyslexia.
For example, functional MRI has been used to look at word
processing and reading in children \9\ and adults \10\ with dyslexia .
It has also been used to examine other functions that are not involved
in reading, but may be affected in dyslexia (either as a part of having
dyslexia, or as a consequence from having dyslexia).\11\
Using brain imaging, researchers have also examined the impact of
intensive reading intervention. We have learned that adults with
dyslexia not only make gains in reading, but also show brain
plasticity, as demonstrated by increases in brain activity.\10\ Brain
anatomy is also malleable; in another study we found that reading
intervention resulted in growth of brain tissue in children \12\
Together, these studies illustrate how reading gains in people with
dyslexia are brought about by complex physiological and anatomical
brain changes.
Researchers are also evaluating to what degree brain imaging data
can foreshadow the amount of reading gains that are made in children
down the road,\13\ similar to prior work in which researchers
identified behavioral measures such as rapid naming and phonemic
awareness to be predictive of later reading outcome.\14\
Some of the same brain areas that are compromised for reading are
also underactive when children with dyslexia solve arithmetic
tasks,\15\ highlighting the far-reaching consequences of dyslexia and
their complex connection to other forms of learning disabilities.
Interestingly, through brain imaging research we sometimes
encounter brain-based observations for which there were no obvious
indications from behavioral studies. For example, we found that the
brains of females with dyslexia do not conform to the neurobiological
model of dyslexia that was largely derived from studies of males.\16\
This might have important implications for diagnosing and treating
females with dyslexia.
Together, brain imaging research has become an important tool for
understanding reading and is a leading contributor in addressing the
multitude of theories that have been proposed to explain dyslexia.
the intersection of scientific research & education
While researchers are careful to assess what is directly causing
the reading problems and to distinguish these brain differences from
those that are a consequence or a byproduct of whatever is causing the
dyslexia,\17\ it has become clear that children who eventually have
dyslexia are likely to exhibit early signs of brain differences,\18\
much like specific behavioral measures in young children are lower for
those who eventually go on to have dyslexia. This is not surprising
given the brain-behavioral relationships and the fact that dyslexia is
heritable. Scientific evidence supports genetic involvement, and a
connection between dyslexia-associated genes and differences in brain
activity.\12\ \13\
Despite the fact that dyslexia often runs in families and there is
research to explain genetic involvement, this knowledge is greatly
underutilized when it comes to early identification. When a parent has
dyslexia, the chances that their child has dyslexia are significantly
higher, approximately 40 percent. Having this information provides a
critical piece of information for educators and health care providers
to consider when confronted with a child who is experiencing
difficulties in learning to read, or even better, prior to that point.
As such, a family history of reading disability should be noted on
questionnaires for entering kindergartners along with health conditions
(allergies, asthma) and home language environment. A family history of
dyslexia can be very predictive of children at risk for reading
difficulties \20\ and, together with early behavioral measures of
skills known to predict later reading outcome (such as phonemic
awareness and letter naming \21\), can be used to signal that a child
is at risk for difficulties in learning to read.
How else can we harness this knowledge to help children with
dyslexia? Brain imaging research has helped people understand that the
brains of children and adults with dyslexia are different. Their
struggles with reading are not because they are stupid or because they
are not trying hard enough. This helps children, parents, and teachers
understand that there is an explanation for their reading difficulties.
There should be no stigma.
Brain imaging has helped scientists characterize dyslexia, and
investigations are ongoing to refine theoretical brain-based models.
However, these studies are conducted in a research setting and involve
groups of participants. They are generally not conducted in a single
person, and brain imaging is not used to make a determination of
whether a specific child has dyslexia. Parents and teachers, however,
often think that it does. Parents wish for a brain scan in their child
because they see their child's difficulties with learning to read and
often feel that the school is not recognizing the problem. They wish
that they could get a picture of the child's brain to put in front of
the teacher to ``prove'' they have dyslexia as a way to get more help
for their child. However, brain imaging data cannot be used in this
way.
Parents have difficulties in gauging whether there is a problem
with their child's reading abilities and, if so, what to do about it. I
have personally been in this situation recently when my daughter in 1st
grade seemed to have trouble sounding out words and reading fluently.
This became especially worrying when she exhibited anxiety and
avoidance around reading, showing clear frustration and describing it
as stupid activity. I quickly realized the difference between my
understanding of how reading is evaluated (using standardized tests
that tap into a range of reading skills, such as decoding, fluency, and
comprehension, and skills that support reading, such as phonemic
awareness, rapid naming and working memory) and how it is measured in
the school (text-reading accuracy using a story with a picture
providing content clues). And I learned that as long as she reads at
grade level, even if her performance continues to drop throughout the
school year, and even though her level of reading is not aligned with
her potential, she will be described as a normal reader. As such, the
perspective on a child's performance when it comes to reading is very
different in terms of the setting (home or school) and depending on the
observer, because different observers use different contexts and have
different goals. Recognizing the importance of early intervention, I
arranged for my daughter to receive explicit instruction that bolstered
both her phonemic (sound) and orthographic (visual word form) awareness
over the summer. As a result of this, she moved from scoring at the
16th percentile as a 1st grader to the 75th percentile as a 2d grader
on a standardized measure of reading accuracy, and she is thriving.
Not all parents have the resources or knowledge to intervene early.
Learning to read is complicated, and for parents of a struggling
reader, it is very challenging to determine if there is a problem and
what to do about it. Fortunately, there are resources that are helpful
to parents, teachers, and students. For example, the Web site
Understood.org, a free, comprehensive online resource to support
families of children with learning and attention issues (for which I
serve as an expert contributor), can be a lifeline. Here, parents can
access the information on early warning signs and learn what to do and
how to take action. The information is provided in clear terms, while
remaining tied to current scientific knowledge.
Overall, the science of dyslexia has made significant advances.
However, academic researchers, even those working in classrooms, are
bound by academic practices to publish in specialty journals, which in
turn can be inaccessible, physically and conceptually, to those who
directly operate as educators in the field. Consequently, teachers may
not be implementing approaches that have been proven to be successful
by rigorous research studies. Conversely, researchers may be pursuing
theories that are not relevant to real classroom settings. As such,
there remains a physical and cultural distance between academic
research and educational practices.
Some agencies have addressed this problem. The National Science
Foundation's Science of Learning Centers are a notable example of
creating an environment to integrate knowledge across multiple
disciplines, establishing common ground for conceptualization and
connecting research with educational challenges. However, the dialog
between science and the classroom is still far too limited. Academic
and educational institutions will need to embrace a cultural change
that facilitates jointly tackling the collective complexity of
dyslexia, and engaging a common language and a common understanding of
how to harness the knowledge of teaching and learning to the benefit of
children with dyslexia.
References
1. O.A. Olulade, D.L. Flowers, E.M. Napoliello, and G.F. Eden,
``Developmental differences for word processing in the ventral
stream,'' Brain Lang., vol. 125, no. 2, PP. 134-45, May 2013.
2. P.E. Turkeltaub, L. Gareau, D.L. Flowers, T.A. Zeffiro, and G.F.
Eden, ``Development of neural mechanisms for reading,'' Nat. Neurosci.,
vol. 6, no. 7, PP. 767-73, Jul. 2003.
3. A.J. Krafnick, L.-H. Tan, D.L. Flowers, M.M. Luetje, E.M.
Napoliello, W.-T. Siok, C. Perfetti, and G.F. Eden, ``Chinese Character
and English Word processing in children's ventral occipitotemporal
cortex: fMRI evidence for script invariance,'' NeuroImage, vol. 133,
PP. 302-12, Mar. 2016.
4. N.I. Jamal, A.W. Piche, E.M. Napoliello, C.A. Perfetti, and G.F.
Eden, ``Neural basis of single-word reading in Spanish-English
bilinguals,'' Hum. Brain Mapp., vol. 33, no. 1, PP. 235-45, Jan. 2012.
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6. M. Carreiras, M.L. Seghier, S. Baquero, A. Estevez, A. Lozano,
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8. G.F. Eden, J.W. VanMeter, J.M. Rumsey, J.M. Maisog, R.P. Woods,
and T.A. Zeffiro, ``Abnormal processing of visual motion in dyslexia
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66-69, Jul. 1996.
9. O.A. Olulade, D.L. Flowers, E.M. Napoliello, and G.F. Eden,
``'Dyslexic children lack word selectivity gradients in occipito-
temporal and inferior frontal cortex,'' NeuroImage Clin., vol. 7, PP.
742-54, 2015.
10. G.F. Eden, K.M. Jones, K. Cappell, L. Gareau, F.B. Wood, T.A.
Zeffiro, N.A.E. Dietz, J.A. Agnew, and D.L. Flowers, ``Neural changes
following remediation in adult developmental dyslexia,'' Neuron, vol.
44, no. 3, PP. 411-22, Oct. 2004.
11. O.A. Olulade, E.M. Napoliello, and G.F. Eden, ``Abnormal visual
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Senator Cassidy. Mr. Boies.
STATEMENT OF DAVID BOIES, CHAIRMAN, BOIES, SCHILLER, AND
FLEXNER, LLP, ARMONK, NY
Mr. Boies. Thank you, Senators Cassidy and Mikulski,
members of the committee.
I am dyslexic. I'm a father of two dyslexic sons. I know
from personal experience the obstacles that dyslexia can cause
in terms of early education. I also know from personal
experience, both my own and my sons, that while dyslexia is a
permanent condition, it does not have to be a permanent
disability. It does not have to interfere with the ability of a
child to realize their full potential to become a functioning,
productive member of society.
What's critical is that dyslexia be identified and the
children with dyslexia get the help that they need at the time
they need that help. That help can be in several forms. It can
be help in learning how to read around the disability of
dyslexia. There is tutoring, there is training that can help
people improve their reading. In addition, if they understand
that they have dyslexia and they understand that there is this
problem with reading, they can focus on alternative ways of
getting information. Dyslexia is an input problem. It makes it
difficult to get information in a particular way. There are
alternative ways to get information, and, most important of
all, dyslexia is not a processing problem. It doesn't have
anything to do with how well you think, how good your judgment
is.
The third thing that early identification can do is it can
help children understand that they're not dumb, that they're
not stupid, that they can achieve. That can be sometimes the
most important thing that a child can understand, that they are
not consigned to being slow for the rest of their lives.
There comes a time when nobody cares how fast you read.
Nobody comes to me as a lawyer and wants to know how fast do I
read. They want to know: can I analyze the law, can I present a
case, can I cross-examine a witness, can I exercise judgment,
can I help them solve legal problems, how well do I think,
what's my integrity, what's my character, how hard do I work?
Dyslexia doesn't have anything to do with those qualities.
Those are the qualities that make a person successful. Those
are the qualities that help somebody achieve and contribute to
society. What children with dyslexia and what parents who have
children with dyslexia need to understand is that this can be a
temporary problem. It's not easy. There's an enormous amount of
work that has to be done. No matter how much help we give
children, they're going to have to really work harder than
their peers. That training and working hard can serve them very
well later in life. My son, Christopher, was tutored 4 days a
week, every week, for 10 years. He had to learn to manage his
time. He had to learn to adapt to that additional burden. That
time management skill serves him extremely well as a lawyer
today.
He always did well in school, if he could get in, which was
hard because he did very poorly on standardized tests.
Standardized tests test what people with--who don't have
dyslexia. It tests them pretty well. It doesn't test people
with dyslexia at all, because what it's doing is it's testing
skills that they don't have, and not the skills that are
important.
Reading and how much information and how many facts you've
accumulated may be a proxy for your intelligence and how you
will succeed in life if you don't have a disability in reading.
If you have difficulty in reading, those standardized tests
don't test your potential at all. We know we're testing the
wrong things. We know that when we test reading, when we test
how much vocabulary you have, we know that those aren't really
life skills. We use those as a proxy, and they're not a bad
proxy for people who don't have dyslexia. But for people who
have dyslexia, they are a terrible proxy.
What we have to do is we have to educate the educators, and
we have to have the patience, and we have to give people the
help that they need so that they can achieve their potential,
and that can be done.
Thank you.
[The prepared statement of Mr. Boies follows:]
Prepared Statement of David Boies
Millions of children and their family members suffer from the
consequences of dyslexia. Most of those consequences are unnecessary;
they are the result of a failure to timely recognize and properly treat
those children.
Recognizing the presence of dyslexia, and understanding what it is
(and is not) is critical to enabling children with dyslexia to realize
their potential and enjoy the happy, productive lives of which they are
capable.
Dyslexia's primary effect is to make it difficult for someone who
is dyslexic to read as easily, and as fast, as they otherwise would.
That effect is challenging enough. Reading is one of the most important
ways by which we ordinarily acquire information--and it is the primary
way most students, particularly in grade school, learn what they are
tested on. Moreover, reading (particularly, again, in grade school) is
valued, and tested, in its own right.
Consequently, the ability to read becomes both the gateway to how
students do on the tests by which they are judged by their parents,
peers, teachers, and themselves and itself a marker for their success.
Recognizing dyslexia early can enable students to receive both
training that can improve their reading skills and help in using other
ways of acquiring information.
My dyslexia was not diagnosed until I was in my 30s and my reading
skills in school were poor. I did not read essentially at all until
late in third grade. However, my father was a high school history
teacher and, including by attending his classes, I was fortunate to
learn early the value of listening as a way of acquiring information.
Recognizing dyslexia early has another, perhaps even more
important, benefit. One of the most corrosive consequences of dyslexia
is that its effects (difficulty in reading, poor scores on standardized
tests) are often misinterpreted as low intelligence.
Dyslexia is an input issue; it makes it difficult for people to
read conventionally, and hence acquire information that way. It does
not limit judgment or intelligence, or the ability to process
information. In fact, there is some data that suggests dyslexia may be
positively correlated with creativity.
In school, particularly early grades, the ability to acquire
information, and particularly the ability to read, is often treated as
the equivalent of intelligence. Students who are slow in reading, and
who accordingly fail to quickly acquire the information that
conventional exams test, are too often classified by their teachers,
their parents, and themselves as ``dumb'', ``stupid'', or simply
inadequate.
Difficulty in reading, and poor results on exams, can of course be
due to lower than average intelligence, but the difficulty in reading
that is caused by dyslexia has nothing to do with, and is not at all
correlated with, intelligence.
Difficulty in reading caused by dyslexia will inevitably affect a
student's performance on examinations testing what a student has
learned from reading assignments. But again this is not a reflection
either of intelligence or the ability to learn--it is merely a
reflection of the difficulty in learning in a particular way at a
particular speed.
Confusing an input problem (difficulty in reading) with a
processing problem (low intelligence) not only prevents steps to solve
the problem but also further erodes the student's confidence, and even
their sense of self-worth; it can discourage a student from continuing
to try, and discourage a student's teachers, and even parents, from
continuing to try to encourage and help.
Failing to timely recognize and properly understand and treat
dyslexia has three consequences. First, children fail to get the help
and training that can improve their ability to acquire information.
Second, the lack of such help and training causes the child to fall
further and further behind. Third, as the child falls further and
further behind, and because the problem is perceived as a lack of
intelligence that will follow the child throughout life, the child (and
the child's teachers and families) become discouraged, and too often
give up.
Recognizing the real issue can enable the child to receive the help
needed to improve reading skills and to learn to use alternative means
for acquiring information. Even more important, it enables everyone to
understand that the problem is largely temporary; success in life
depends on judgment, intelligence, integrity, and commitment--not on
how fast a person reads.
Even though my dyslexia was not diagnosed early, I was fortunate.
Growing up in a small Midwest farming town in the 1940s reading was not
a metric by which young boys measured their self-worth. My parents,
both public school teachers, were supportive and my father in
particular helped me learn by a combination of what I would now call
lectures and what I have since come to recognize as Socratic dialogs.
It is much harder for today's young people who grow up in a time
where there is academic competition to get into ``junior pre-
kindergarten'' (which, of course, is the year the student spends in
school before ``senior pre-kindergarten'', which in turn is the year
the student spends in school before kindergarten).
There is so much emphasis on early learning and testing that
students can be forgiven for concluding by the time they are teenagers
that they will either be masters of the universe or abject failures
based on how their academic progress to that point has been evaluated.
Both, of course, are likely wrong. But the perception can derail both
from reaching their potential.
The debilitating effect that dyslexia can have on a child's
confidence and sense of self-worth is aggravated by the fact that the
very time reading and input most dominate reasoning and judgment in
conventional test results, is the very time children are at their most
vulnerable.
Recognizing that the difficulty in reading dyslexia causes can be
mitigated by training, that alternative ways of acquiring information
can be emphasized, and that dyslexia does not imply anything about a
person's ability to reason, analyze, or communicate can give students
the patience to continue to work and achieve, and give their teachers
and parents the patience to help and support them.
Today some students whose families (and schools) can afford the
best in testing are fortunate in having their dyslexia identified,
understood, and treated early. However, the vast majority of students
with dyslexia are not so fortunate. Their future, and the future
contributions they can make to our society, is at severe risk. That
risk is preventable.
Dyslexia is not an indication of, and need not affect, the ability
of a person to succeed in life. There are many well-known examples, and
many, many more unknown examples, of people with dyslexia who are
highly effective, productive, successful, members of society. Success
in life is not a function of how fast a person can read. Life is rarely
a timed test; even when it is, it is rarely if ever based on reading
speed.
We need to recognize this reality. We need to enable children,
teachers, parents, and test administrators to recognize this reality.
And we need to provide the resources and guidance that will help, not
impede, children from reaching their potential. They deserve it. And
our country needs it.
Senator Cassidy. Dr. Mahone.
STATEMENT OF MARK MAHONE, Ph.D., ABPP, DIRECTOR, DEPARTMENT OF
NEUROPSYCHOLOGY, KENNEDY KRIEGER INSTITUTE, BALTIMORE, MD
Mr. Mahone. Good morning, Senator Cassidy, Senator
Mikulski, fellow members of the panel. Thank you for the
opportunity to speak with you this morning.
Dyslexia is currently the most prevalent educationally
handicapping condition in the United States. It's twice as
common as ADHD, 10 to 15 times as prevalent as autism. It
affects an estimated one in five individuals nationwide. Even
more importantly, many students show symptoms of dyslexia,
including slow and inaccurate reading, weak spelling, or poor
writing. Whether or not they meet full criteria for special
education, most students benefit from systematic, explicit
instruction in reading, writing, and language methods.
The problem is that many students are not getting access to
this structured literacy instruction. As a result, there's an
alarming achievement gap. As was mentioned earlier, the NAEP
data--I have results from 1998 through 2013--fourth grade data
from the NAEP showed that 9 percent of students with
disabilities scored proficient in reading, compared to 26
percent of nondisabled peers. Both of those statistics are
unacceptably low.
But is the prevalence of dyslexia so high that it can
explain these high rates of school failure? I would assert that
it's no, but there are other reasons. First, it is that pre-
service teacher training programs routinely fail to provide
teachers with the information based on the scientific
literature about how learning occurs and also what gets in the
way of learning, based on what we know from the neurosciences,
from the behavioral sciences, and from the educational
sciences. This leads to a translational gap.
When teachers enter the field without prerequisite
training, they must get the training on the job. They get it
through supervision, mentoring, and from professional
development. Getting training that way is expensive,
inefficient, and burdensome to the schools and to the teachers
themselves. It also places the responsibility for training
teachers on the local school systems rather than on the
institutes of higher education.
Second, a complicating factor in working with students with
dyslexia is that pure dyslexia is often the exception rather
than the rule. Students with dyslexia often have associated
behavioral, motivational, and social-emotional problems and
other conditions that interfere with the implementation of
otherwise routine, evidence-based practices. Addressing the
reading problem alone instead of the needs of the whole child
leads to incomplete and ineffective care.
Third, individuals at the local education level in
leadership positions often don't have the training, knowledge,
and background to effectively and appropriately advocate for
policy changes that will help translate what we know from the
science into educational practice at the local school level,
and especially as it relates to students with dyslexia.
There are other additional concerns, and I want to
highlight some of those. Despite the best efforts of our
scientific community, there is still heterogeneity in
terminology that has become an impediment to achieving
consensus in identification, treatment, and epidemiology. We
know that dyslexia is a neurobiologically based developmental
disorder. It occurs along a continuum rather than as a discreet
entity.
We define it most often by low reading achievement. In the
scientific literature, however, there are differences in where
the cut point comes or how low someone has to perform in
reading before it becomes dyslexia, with differences ranging
from the 5th percentile up to the 25th percentile. Not
surprisingly, when there are differences in the literature, the
behavior, the learning, the neurobiological correlates, and
genetics of dyslexia all look different depending on how it's
defined.
As we move forward with implementation of ESSA, it's
critical for the scientific and educational communities to work
toward a common language for identification in studying
dyslexia with efforts toward a more specific terminology. This
consistency extends to implementation of response and
intervention.
Finally, early detection of dyslexia is critical. But I
must say we need to proceed with caution. The mission of early
detection presents us with a conflict that requires awareness
of the developmental appropriateness of reading expectations
and reading instruction for a significant proportion of
kindergarten children.
We know how to identify early risk factors for dyslexia. As
scientists, educators, and policymakers, we must distinguish
between unexpected and unwarranted failures in reading
achievement. In other words, considering early detection, we
must determine whether a problem represents true dyslexia or
the risk for it, or a brain that is just simply too young and
not yet ready to read.
This is particularly important because in the last 20
years, even before Common Core standards, we have gone to a
system in which kindergarten is the new first grade. There are
emotional and motivational consequences associated with
developmentally premature educational expectations for children
who experience failure this early, and the risk is exacerbated
in boys, who develop later than girls upwards of a year, on
average, by kindergarten.
Thank you.
[The prepared statement of Mr. Mahone follows:]
Prepared Statement of Mark Mahone, Ph.D., ABPP
the problem(s)
An Achievement Gap
Approximately 13-14 percent of students in the United States (more
than 6 million children) are identified as having a handicapping
condition and receive special education services in school. Half of
those identified for special education are classified as having a
Specific Learning Disability, and approximately 85 percent of those
having a primary learning disability have a learning disability in
reading and language processing (i.e., dyslexia). As many as one-third
of all students may have symptoms of dyslexia, including, but not
limited to, slow or inaccurate reading, weak spelling, or poor writing.
Not all meet full criteria for a ``disability,'' or will qualify for
special education, but most benefit from systematic, explicit
instructions in reading, writing, and language (also known as
structured literacy instruction).
In my home State of Maryland, the 2015 standardized assessments
revealed that those students enrolled in special education performed
dismally low. On the Partnership for Assessment of Readiness for
College and Careers (PARCC) assessment for grade level 10, only 7.1
percent of students in special education met or exceeded expected
performance level (i.e., Level 4 or 5) for literacy, compared to 39.7
percent of all students (which is still unacceptably low). These
results are similar to national statistics for children with
disabilities. Recent data from the National Assessment for Educational
Progress (NAEP) for fourth grade achievement show a significant, long-
standing difference between all students and those with disabilities.
From 1998 to 2013, 8.6 percent of students with disabilities scored
proficient in reading versus 26 percent of non-disabled peers (also
unacceptably low). The achievement gap for students with disabilities
is especially prominent in schools with limited resources such as those
in the Baltimore City Public School (BCPS) system, where the majority
of the students come from low-income families and the need for services
far surpasses available resources (BNIA, 2012). Moreover, according to
the 2014 Department of Education Report to Congress on the
Implementation of the Individuals with Disabilities Education Act
(IDEA), only 10-15 percent of students with individualized education
programs (IEPs) exit the special education system by returning to
regular education.
Why Students Fail
Why is it that so many students (with otherwise adequate
intelligence) struggle or fail academically in today's schools? In
particular, why are so many children failing when it comes to learning
to read? Is the prevalence of dyslexia so high it can explain such high
rates of school failure? I assert that the answer is no.
There are a variety of (often inter-related) reasons, for academic
failure, including: (1) poverty/disadvantage, (2) poor instructions,
(3) childhood trauma (including neglect and abuse), (4)
psychopathology, (5) chronic psychosocial stress, (6) illness or
injury, and, the focus of my testimony, (7) highly prevalent
neurodevelopmental disorders (i.e., dyslexia and Attention-deficit/
Hyperactivity Disorder--ADHD). The wait-to-fail model typically
associated with current educational practices, where students first
have to underperform in order to receive the necessary educational
interventions, suggests students with disabilities may be at risk from
early on in their educational lives.
Opportunity-to-Learn
One potential explanation for this persistent achievement gap is
the differential in the opportunity-to-learn (OTL), or the quantity and
quality of instruction for students with disabilities compared to their
non-disabled peers. Reduced OTL exists for students with disabilities
despite increased access to the general education setting and
curriculum (Eckes & Swando, 2009). Moreover, there is a demonstrated
OTL differential for students with disabilities and their non-disabled
peers, even within the same classroom (Kurz, et al., 2014).
Prevalence of Dyslexia
Dyslexia is highly prevalent. It is not just the most common
learning disability, but the most common developmental disorder--twice
as prevalent as ADHD, and 10-15 times as prevalent as autism. The
International Dyslexia Association (IDA) reports that dyslexia affects
an estimated 8.5 million school children and one in six individuals
nationwide.
Societal Risks Associated with Academic Failure
Up to 76 percent of students with learning disabilities will be
suspended at least once (Fabelo, et al., 2011). The presence of a
learning disability also confers a greater risk for school dropout
(Cramer, et al., 2014), especially among low-income students, and a
well-documented connection exists between school dropout and
incarceration (National Center on Secondary Education and Transition,
2012). According to the National Disability Rights Network (2012), it
is estimated that as many as 50 percent of inmates have some type of
disability. In the juvenile justice system, this number is estimated to
be up to 75 percent. Moreover, approximately 75 percent of youth under
age 18 who have been sentenced to adult prisons have not completed 10th
grade. Within the juvenile justice population, 70 percent suffer from
learning disabilities and 33 percent are reading below the 4th grade
level (Coalition for Juvenile Justice, 2001). Given these observations,
appropriate (and thorough) early identification and provision of
evidence-based intervention for children with learning disabilities,
especially dyslexia, represents a public health priority.
Problems with Current Educational Practices
While there are undoubtedly a variety of reasons behind the
persistent achievement gap among children with disabilities (and
dyslexia specifically), I assert that there are three critical problems
with current educational practices that contribute most prominently to
the chronically (and unacceptably) low performance and underlie this
public health crisis.
First, pre-service teacher preparation programs fail to routinely
train educators to fully understand how learning occurs in children
(and conversely, what processes get in the way of learning) using
current knowledge from the developmental, behavioral, and neuroscience
literature. As a result, the strategies and techniques being
implemented by teachers of children with disabilities are often not
based on available scientific evidence (i.e., a ``translation gap'').
Second, despite (often intensive) intervention, students with
dyslexia often continue to have significant associated problems (e.g.,
behavioral, motivational, psychiatric) that interfere with learning and
with routine educational interventions. Addressing only the reading
problem instead of all of the needs of the child leads to incomplete
and ineffective care.
Third, individuals in local educational leadership positions (i.e.,
those who make decisions regarding policy, training, and curricula)
often do not have the training and knowledge to appropriately advocate
for policy changes that ultimately benefit the behavior and learning of
students with dyslexia.
issues complicating the care of individuals with dyslexia
The Trouble with Terminology
Despite best efforts by the scientific community, heterogeneity in
terminology and definitions remains an impediment to achieving
consensus in identification, treatment, and epidemiology. For the
purposes of my testimony, I consider dyslexia to be equivalent to (or
interchangeable with) a developmental learning disorder (or specific
learning disability) in reading (i.e., reading disability or disorder).
In other words, dyslexia is one type of (specific) learning disability.
The Individuals with Disabilities Education Improvement Act of 2004
uses the term Specific Learning Disability, defined as:
``A disorder in one or more of the basic psychological
processes involved in understanding or in using language,
spoken or written, that may manifest itself in an imperfect
ability to listen, think, speak, read, write, spell, or do
mathematical calculations. The term includes such conditions as
perceptual handicaps, brain injury, minimal brain dysfunction,
dyslexia, and developmental aphasia, while it excludes children
who have learning problems that are primarily the result of
visual, hearing, or motor handicaps; of mental retardation (now
known as intellectual disability); of emotional disturbance; or
of environmental, cultural, or economic disadvantage.''
The 2013 guidelines outlined in the American Psychological
Association's Diagnostic and Statistical Manual of Mental Disorders
(DSM-5) use a slightly different term: Specific Learning Disorder.
According to the DSM-5, diagnosis is made using a synthesis of the
individual's history (development, medical, family, education),
psychoeducational reports of test scores and observations, and response
to intervention. Thus, the DSM-5 criteria reflect a hybrid model of
identification. Importantly, the guidelines also reflect recognition
that individuals may ``grow into'' their learning deficits; thus,
functional problems may not be fully manifested until a later age.
The definition of dyslexia used by the International Dyslexia
Association--IDA (and also adopted by the Eunice Kennedy Shriver
National Institute of Child Health and Human Development--NICHD), is as
follows:
``Dyslexia is a specific learning disability that is
neurobiological in origin. It is characterized by difficulties
with accurate and/or fluent word recognition and by poor
spelling and decoding abilities. These difficulties typically
result from a deficit in the phonological component of language
that is often unexpected in relation to other cognitive
abilities and the provision of effective classroom instruction.
Secondary consequences may include problems in reading
comprehension and reduced reading experience that can impede
growth of vocabulary and background knowledge.''
The DSM-5 provides more specific guidelines in its criteria than
the IDA. DSM-5 criteria for a Specific Learning Disorder in reading
includes difficulties with learning and using academic skills, as
indicated by the presence of at least one of the following symptoms
that have persisted for at least 6 months, despite the provision of
interventions that target those difficulties:
(1) inaccurate or slow and effortful word reading (e.g., reads
single words aloud incorrectly or slowly and hesitantly, frequently
guesses words, has difficulty sounding out words); or,
(2) difficulty understanding the meaning of what is read (e.g., may
read text accurately but not understand the sequence, relationships,
inferences, or deeper meanings of what is read).
Dyslexia is Defined by Low Achievement in Reading--But How Low?
Implied (or stated specifically) in the aforementioned definitions
is the notion that dyslexia is a neurobiologically based developmental
disorder that affects the brain's ability to receive, process, store,
and respond to information. Although not specifically stated, dyslexia
is considered to occur along a continuum, with variability in severity
and characteristic features, rather than as a discrete, dichotomous
entity. Put simply, in most cases, dyslexia refers to instances in
which an individual's reading achievement unexpectedly falls at the low
end of the normal distribution of all readers. Except in cases of very
low overall intellectual level, this ``low achievement'' model of
dyslexia is not tied to the child's overall IQ, and does not require a
``significant discrepancy'' between the individual's IQ and reading
achievement. Conversely, the model also does not imply that individuals
with dyslexia have exceptionally high IQ, or compensatory ``strengths''
in other cognitive or academic skill areas.
Unfortunately, while the low achievement model of dyslexia is
fairly well-accepted in the scientific community, there is less
consensus as to the threshold for defining low reading achievement as
dyslexia, with distributional ``cutoff '' scores ranging from as low as
the 5th percentile to the 25th percentile. Not surprisingly, the
scientific literature yields different findings with regard to the
cognitive and behavioral phenotypes, neurobiological correlates (e.g.,
neuroimaging, electrophysiology), and genetics of dyslexia depending on
how it is defined.
Additionally, given that the Federal definition of a Specific
Learning Disability in reading used in determining eligibility for
special education services leaves considerable room for local
interpretation (e.g., relative to the criteria for Intellectual
Disability), school districts across the U.S. demonstrate considerable
inconsistency in diagnostic practices. Although clearly not the intent
of the Federal law, in practice, it is not uncommon for a child
receiving special education services for dyslexia in one school
district to move to another district and be declared suddenly
``ineligible'' based on the new district's interpretation of the
criteria.
Developmental Course of Dyslexia
Dyslexia is acknowledged as a developmental disability. That means
those with ``symptoms'' of reading problems do not necessarily have a
disability. Specifically, a disability is considered to occur when
one's personal limitations (often biological in nature) produce a
significant disadvantage when attempting to function in one's society.
Thus, a learning disability is necessarily considered within the
context of the environment, personal factors, and individualized
supports. It implies that there is a ``mismatch'' or discrepancy
between one's own biology and demands of the environment (considering
all available supports). As a developmental disability, it is
acknowledged that this discrepancy (and the functional impact)
associated with dyslexia can change over time.
For most individuals with dyslexia, the functional deficits first
have an impact in childhood, usually in the preschool or early
elementary school years. For some, however, the manifestations and
impact may not become evident until later in childhood, in the teenage
years, or even in the adult years, even though the neurobiological
basis of the condition is present earlier--a concept referred to as the
``time referenced symptom'' (Rudel, 1981). Nevertheless, in most
individuals with dyslexia, the disorder manifests in a persistent
functional deficit, rather than a developmental lag. The functional
disability often persists over time, despite intervention efforts, and
typically does not spontaneously remit with time or age. Among
individuals with early-onset learning disabilities who have received
consistent, high-quality intervention by early elementary school,
deficits in word reading accuracy can improve; however, deficits in
phonological processing, automaticity of word recognition, expressive
language, and reading fluency tend to persist.
It's Not Just Decoding: Reading Fluency and Processing Speed
Reading fluency, or the ability to read words quickly either in
isolation or text, is especially critical for older children who are
required to learn from what they are reading. The lack of fluency
increases demands on other processes, such as working memory, and
results in difficulty with comprehension because higher-level processes
have to compete with word decoding for the same time-limited resources,
creating a bottleneck. Therefore, especially for older children, it is
critical that they are not only accurate at word reading, but also
efficient, automatic, and fluent readers. It is well-established that
rapid automatized naming deficits (reflective of poor automaticity) are
present in individuals with dyslexia; however, automaticity deficits
are also observed in children referred for learning problems, whether
or not they have dyslexia specifically (Waber, et al., 2000).
Dyslexia and ADHD represent the two most common childhood
neurodevelopmental disorders. Approximately 35-40 percent of children
with dyslexia have ADHD; while 35-40 percent of children with ADHD have
dyslexia. As such, the two disorders co-occur more often than expected
by chance (Couto, et al., 2009). The most parsimonious explanation for
the co-occurrence is that they partially share genetic risk factors
(Greven, et al., 2011).
To this end, scientists have identified a ``multiple-deficit''
model to explain the comorbidity between ADHD and dyslexia in which
each disorder manifests multiple deficits--some specific and some
shared (Pennington, et al., 2010). The ADHD model includes one unique
predictor (response inhibition) and one shared predictor (processing
speed), while the dyslexia model includes two unique predictors
(phonological awareness, naming speed), and one shared predictor
(processing speed). Here, processing speed represents the speed with
which a task is completed with reasonable accuracy.
Children with ADHD (nearly 10 percent of students ages 4-17 years;
Pastor, et al., 2015) commonly display slow processing speed (Jacobson,
et al., 2011); however, slow processing speed is also observed in
children with dyslexia (Willcutt, et al., 2005). Becoming a skilled
reader involves adequate reading fluency, which is linked to efficient
processing speed. Thus, while processing speed is separable from the
core phonological deficit in dyslexia, it can influence reading
fluency, even among individuals who can read single words accurately
(i.e., those without ``classic'' phonological dyslexia), and can affect
the development of more complex academic skills such as reading
comprehension (Sesma, et al., 2009).
To this end, processing speed (a core skill underlying reading
fluency) may represent a promising candidate for a behavioral
``polyphenotype'' (i.e., a phenotype constituting core deficits of more
than one disorder), whose psychological makeup can account for
comorbidity between common neurodevelopmental conditions and whose
genetic architecture can account for the phenotypic correlations
between these highly prevalent disorders (Gregorinko, 2012).
Late Emerging Reading Disabilities and Reading Comprehension
Approximately 41 percent of all students with dyslexia have late-
emerging reading disabilities; that is, deficits are not evident until
at least third grade. This pattern, sometimes known as the ``fourth-
grade slump,'' can be associated with the transition from ``learning to
read'' to ``reading to learn,'' and may also be related to reduced
vocabulary development in students of low socioeconomic status
backgrounds. From this point forward, curricula emphasize fluency and
comprehension rather than more basic word recognition skills. Beyond
third grade, students are also expected to be able to incorporate
cause/effect sequences, goals/plans for characters, and conclusions
that relate to final events to those at the beginning of the story (all
higher-order cognitive skills). Children who received early
intervention and showed improvement may start to struggle again with
the increased demands and volume of middle and high school reading and
when they are expected to work more independently.
Late-emerging reading disabilities are often associated with
coexisting conditions, especially ADHD, the second most common
developmental disability. It is clear that children who have early
problems involving basic word recognition will most likely also have
difficulty with reading comprehension; however, more recently,
researchers have identified groups of children without reading basic
word reading deficits who go on to have difficulties in reading
comprehension, perhaps as a result of their associated executive
function deficits (Sesma, et al., 2009). These children are considered
to have ``specific'' reading comprehension disorders (Cutting, et al.,
2009; Locascio, et al., 2010), and many also have associated ADHD.
Working memory deficits (i.e., problems ``holding'' and manipulating
information mentally) associated with ADHD can prevent students from
monitoring what they read, as they are more susceptible to being
distracted by detail when reading longer text--failing to ``remember''
main ideas. These findings challenge the long held ``simple view'' of
reading (Hoover & Gough, 1990), which argued that reading comprehension
was primarily the product of word reading and listening comprehension,
and acknowledge the important contribution of higher-order ``executive
function'' skills to the development of competent reading.
Early Detection of Dyslexia--Proceed with Caution
The 2016 Research Excellence and Advancements for Dyslexia Act
(READ Act) (H.R. 3033) supports important research to further our
understanding of dyslexia, including emphasis on better methods for
early detection and teacher training. The Act specifies early
identification of children and students with dyslexia, professional
development about dyslexia for teachers and administrators, curricula
development and evidence-based educational tools for children with
dyslexia. As an educator, clinician and scientist, I applaud these
efforts.
Nevertheless, when considering early detection of dyslexia (i.e., a
developmental disability, as defined above), it is critical to
distinguish between ``unexpected'' and ``unwarranted'' failures in
reading achievement. In other words, when considering early detection,
one must determine whether a problem represents true dyslexia or a
brain that is not (yet) ready to read. To be clear, with informed
assessment, risk for dyslexia can be identified early (often in the
preschool years); however, we need to be very careful that we are not
simply identifying children who are not yet biologically ready to read,
but who have been pushed (too early) into academic demands. The
scientific literature suggests that early (and accurate) identification
of dyslexia and appropriate teaching of reading can prevent the
experience of failure in children who are at risk. With appropriate
interventions, the life history of students with dyslexia can be
substantially ``normalized'' and secondary mental health issues
averted.
In the last 20 years, however, even before NCLB, ESSA, Common Core
Standards, or PARCC, there has been an alarming trend toward increasing
early academic demands, such that Kindergarten is the ``new first
grade.'' These practices ignore the child (and brain) development
scientific literature as it relates to developmental readiness for
academic demands. There are risks associated with developmentally
premature educational expectations for the children who experience
failure, and the emotional/motivational consequences of encountering
premature reading and writing expectations may be long lasting.
Moreover, the over-burdening of the already under-supported special
education services with the ``unready'' now becoming indistinguishable
from the truly dyslexic is yet another serious consequence. At the
level of brain development, children forced prematurely to perform
academic tasks may do so and appear to make progress, however, at the
expense of using suboptimal circuitous pathways in the brain that
ultimately may fail to support efficient and comfortable skill
utilization in later years. This risk is exacerbated in young boys,
whose physical maturation and brain development are at least a year
behind that of same-age girls by Kindergarten entry (Eme, 1992;
Lenroot, et al., 2007).
Thus, the (very appropriate) mission of early detection of dyslexia
presents us with a conflict that requires awareness of the
developmental appropriateness of reading instructions and reading
expectations for a significant proportion of students in Kindergarten
(or younger).
``Pure'' Dyslexia is the Exception, Not the Rule
Most definitions of dyslexia specify that the observed difficulties
in reading are not due to other physical, cognitive, or emotional
exclusionary factors. The assessments of these exclusionary factors are
often complicated, because dyslexia commonly co-occurs with ADHD,
language and other communication disorders, developmental motor
coordination disorder, and other psychiatric disorders, including
anxiety disorders and depression.
A sizable proportion of students with dyslexia have associated
social-emotional problems, with estimates ranging from 38 percent to 75
percent (Bryan, et al., 2004). A recent meta-analysis revealed that
approximately 70 percent of students with learning disabilities
experience higher levels of anxious symptomatology than their peers
without learning disabilities (Nelson & Harwood, 2011), raising the
concern that many (if not most) students with dyslexia are at high risk
for anxiety disorders that cause additional distress, reduce
motivation, and complicate interventions (given the negative impact of
anxiety on cognitive performance of all kinds). Students with learning
disabilities are also at greater risk for developing depression, as
they tend to struggle with self-esteem and are less socially accepted
than students without learning disabilities (Maag & Reid, 2006), and
some studies have shown a link between learning disabilities and
increased rates of suicide (Bender, et al., 1999).
Given these associations, ``pure'' dyslexia is more the exception
than the rule, and attention to the associated conditions and risks is
of paramount importance.
what needs to be done
The prevalence, morbidity, and societal costs associated with
dyslexia represent a major public health concern. In light of the
problems cited above, I offer the following recommendations to support
individuals with dyslexia and their families.
1. Support Translational Educational Practices. The wealth of
scientific knowledge is often not accessible to front line teachers.
Pre-service (undergraduate and graduate) and professional development
training programs for teachers provide inadequate training in evidence-
based practices for identification of dyslexia and intervention. If
teachers are trained in evidence-based practices, they will use them.
If they enter the field without this training, they will need access to
professional development programs, along with supervision and
mentoring, in order to use these programs with accuracy and fidelity.
2. Strive for Consistency in Diagnostic Practices. It is critical
for the scientific and educational communities to work toward a common
language and a common set of procedures for identifying dyslexia, with
efforts aimed toward more specific terminology.
3. Increase opportunity-to-learn (OTL) for students with dyslexia.
OTL is dependent on three interrelated classroom practices: (1) the
amount of instructional time committed to the curriculum; (2) the use
of evidence-based practices for teaching students with dyslexia; and,
(3) classroom emphasis on best practices for supporting and developing
high-order cognitive skills, such as problem solving, planning, and
organizing thoughts and information (which are especially important,
considering the comorbid conditions associated with dyslexia). Given
the increased emphasis within classroom assignments and in standardized
testing (such as PARCC) on integration of information, self-monitoring,
and problem solving, competence in higher-order cognitive skills
(executive functions) is critical to student success and to narrowing
the achievement gap.
4. Recognize the many forms of dyslexia. Dyslexia should be
considered to include not only difficulties in phonology, decoding,
automaticity and word recognition, but also the (often later emerging)
problems in reading fluency and comprehension.
5. Support training of general educators. Recognize that most
children with dyslexia are taught primarily by general education
teachers. It is critical to support inclusive practices in which
special educators and reading specialists collaborate with general
educators.
6. Treat the whole child--not just reading. Support efforts that
allow acknowledge that students with dyslexia are at risk for
psychosocial, language, motivational, academic, neuromotor, and
psychiatric co-morbidities. By treating only reading problem, we reduce
the chances for positive outcomes.
7. Support use of developmentally appropriate methods for early
identification. It is critical that those involved in early
identification of dyslexia understand the potential for
misidentification of children who are prematurely placed into
academically accelerated programs before their brains are
developmentally ready.
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Senator Cassidy. Ms. Hanrath.
STATEMENT OF APRIL HANRATH, PARENT, SALT LAKE CITY, UT
Ms. Hanrath. Good morning, Senator Cassidy, Senator
Mikulski, members of the HELP Committee, fellow witnesses, and
attendees. Thank you for giving me an opportunity to share my
family's story of living with dyslexia. My name is April
Hanrath, and I am the proud mother of Jocelyn, who is a senior
in high school in our hometown of Salt Lake City, UT. I am also
a parent advocate with Understood, a free comprehensive online
resource for parents of children with learning and attention
issues.
I am honored to share our journey with dyslexia as we have
navigated through the educational system in Utah. I also
recognize that we are not alone in this journey. Over 2 million
children have learning disabilities, most of whom struggle with
reading, and the National Center for Learning Disabilities
estimates that another 15 percent of students struggle in
school due to an unidentified learning or attention issue. I
sit before you eager to tell our story, but hopeful that you
will have an opportunity to meet parents from your States who
face similar challenges and successes.
Through my testimony, I hope you will hear three messages
come through loud and clear. First, it is critically important
to identify learning disabilities like dyslexia in early
elementary school. Second, we must support general and special
educators by giving them training about dyslexia and learning
disabilities, co-occurring issues, and necessary
accommodations. Third, and most importantly, all of us must
have high expectations for students with dyslexia.
Policymakers, educators, and families alike must recognize
that students like Jocelyn are fully capable of excelling in
school and college. My daughter, Jocelyn, is proof that when
you hold students with dyslexia to high standards and provide
them with the tools they need to succeed, they are able to
fulfill their goals and dreams. Let me tell you a little about
Jocelyn, who is sitting right behind me. Jocelyn is a driven,
bright young woman who has excelled in school and soccer. In
everything she does, she holds herself to a high standard, and
failure has never been an option for her. Yes, Jocelyn has
learning disabilities, as she is dyslexic, but she has never
used her challenges as an excuse to not achieve. In fact, it
has only motivated her to work harder.
Next month, Jocelyn will graduate high school with a GPA of
over 3.7. Next year, she will enroll in Highline Community
College in Washington State with a soccer scholarship and an
internship with the Seattle Reign, the professional women's
soccer team. After that, she plans to finish college at a 4-
year school to earn her degree in sports management with a
sports psychology minor. To support her goals, I am proud to
say that Jocelyn received the 2016 Allegra Ford Thomas
Scholarship from the National Center for Learning Disabilities.
That's Jocelyn now, but over the past 13 years, we've had
our ups and downs. When Jocelyn was in fourth grade, she was
struggling with reading and started becoming withdrawn from
school. At the end of fourth grade, Jocelyn was evaluated for
special education and found to have an above average IQ with
significant dyslexia, poor fine motor skills, and severe test
anxiety. She has also had challenges with writing, known as
dysgraphia; keeping herself focused and managing time, known as
executive functioning; and difficulty with focusing, like ADHD.
Looking back, I wish Jocelyn's needs were addressed earlier
than fourth grade, a time when reading is an integral part of
nearly every class in school. Starting in fifth grade and
largely continuing to today, Jocelyn has received
accommodations like extra time, oral testing, and using a
computer rather than having to hand write assignments. These
accommodations have made a huge difference for Jocelyn because
they allow her teachers to teach her in a way that works for
her. They allow her to show what she knows in a more accurate
way.
For me, as her mother, what is of paramount importance is
that Jocelyn has always been taught to the grade level she is
enrolled in alongside her peers. Accommodations have allowed
Jocelyn to access the grade level content, and even above grade
level content. In fact, starting as a freshman and continuing
throughout her 4 years at East High School, Jocelyn took honors
and AP classes in addition to her regular classes.
It was an amazing special education teacher, Carrie
Szumnarski, who helped Jocelyn navigate some challenging
situations along the way. For example, when some of Jocelyn's
teachers were unfamiliar with dyslexia, Jocelyn, Carrie, and I
helped educate them to dispel the myth that dyslexia is a sign
of a low IQ.
Or when some of Jocelyn's teachers were reluctant to give
her accommodations, Jocelyn used the self-advocacy skills
Carrie helped her develop to explain what accommodations are
and why she needed them.
When some of Jocelyn's friends joked around about being
dyslexic when they made mistakes reading aloud in class,
Jocelyn used that opportunity to share that she was dyslexic
and explain to them what it was like to be dyslexic.
Throughout our journey we have used all of these
experiences to help others understand what dyslexia is and,
more importantly, what dyslexia is not. Resources like the
Understood.org and the National Center for Learning
Disabilities have helped us along the way. These last 13 years
have taught me that while the educational system is not created
with dyslexics in mind, with the right information, training,
and support, students with dyslexia can thrive.
I can say that I am a better mother and person because of
our journey and that Jocelyn's future is limitless because she
is an amazing young woman with much to give the world.
[The prepared statement of Ms. Hanrath follows:]
Prepared Statement of April Hanrath
Good Morning Chairman Alexander, Ranking Member Murray, Senator
Cassidy, Senator Mikulski, members of the HELP Committee, fellow
witnesses, and attendees.
Thank you for giving me an opportunity to share my family's story
of living with dyslexia.
My name is April Hanrath. I am the proud mother of Jocelyn, who is
a senior in high school in our hometown of Salt Lake City, UT. I am
also a Parent Advocate with Understood, a free comprehensive online
resource for parents of children with learning and attention issues.
I am honored to share our journey with dyslexia as we navigated
through the educational system in Utah.
But I also recognize that we are not alone in this journey.
Over 2 million children have learning disabilities, most of whom
struggle with reading. And the National Center for Learning
Disabilities estimates that another 15 percent of students struggle in
school due to an unidentified learning or attention issue.
I sit before you eager to tell our story but hopeful you will have
an opportunity to meet parents from your States who face similar
challenges and successes.
Through my testimony, I hope you will hear 3 messages come through
loud and clear:
First, it is critically important to identify learning
disabilities like dyslexia in early elementary school.
Second, we must support general and special educators by
giving them training about dyslexia and learning disabilities, co-
occurring issues, and necessary accommodations.
Third, and most importantly, all of us must have high
expectations for students with dyslexia. Policymakers, educators and
families alike must recognize that students like Jocelyn are fully
capable of excelling in school and college.
My daughter, Jocelyn is proof that when you hold students with
dyslexia to high standards and provide them with the tools they need to
succeed, they are able to fulfill their goals and dreams.
Let me tell you a little about Jocelyn, who is sitting right behind
me.
Jocelyn is a driven, bright young woman who has excelled in school
and soccer. In everything she does, she holds herself to a high
standard; and failure has never been an option for her.
Yes, Jocelyn has learning disabilities, as she is dyslexic, but she
has never used her challenges as an excuse to not achieve. In fact, it
has only motivated her to work harder.
Next month, Jocelyn will graduate high school with a GPA of over
3.7. Next year she will enroll in Highline Community College in
Washington State with a soccer scholarship and an internship with the
Seattle Reign, the professional women's soccer team.
After that, she plans to finish college at a 4-year school to earn
her degree in sports management with a sports psychology minor.
To support her goals, I am proud to say that Jocelyn received the
2016 Allegra Ford Thomas Scholarship from the National Center for
Learning Disabilities.
That's Jocelyn now--but over the last 13 years, we've had our ups
and downs.
When Jocelyn was in fourth grade, she was struggling with reading
and started becoming withdrawn from school.
At the end of fourth grade, Jocelyn was evaluated for special
education and found to have an above average IQ with significant
dyslexia, poor fine motor skills, and severe test anxiety. She has also
had challenges with writing, known as dysgraphia; keeping herself
organized and managing time, known as executive functioning; and
difficulty with focusing, like ADHD.
Looking back, I wish Jocelyn's needs were addressed earlier than
4th grade, a time when reading is an integral part of nearly every
class in school.
Starting in 5th grade and largely continuing to today, Jocelyn has
received accommodations like extra time, oral testing and using a
computer rather than having to hand write assignments.
These accommodations have made a huge difference for Jocelyn
because they allow her teachers to teach her in a way that works for
her. And they allow her to show what she knows in a more accurate way.
But for me, as her mother, what is of paramount importance is that
Jocelyn has always been taught to the grade level she is enrolled in
alongside her peers. And, accommodations have allowed Jocelyn to access
the grade level content, and even above grade level content.
In fact, starting as a freshman and continuing throughout her 4
years at East High School, Jocelyn took honors and AP classes in
addition to her regular classes.
It was an amazing special education teacher, Carrie Szumnarski, who
helped Jocelyn navigate some challenging situations along the way.
For example:
When some of Jocelyn's teachers were unfamiliar with
dyslexia, Jocelyn, Carrie and I helped educate them to dispel the myth
that dyslexia is a sign of a low IQ.
Or:
When some of Jocelyn's teachers were reluctant to give her
accommodations, Jocelyn used the self-advocacy skills Carrie helped her
develop to explain what accommodations are and why she needed them.
And:
When some of Jocelyn's friends joked around about being
dyslexic when they made mistakes reading aloud in class, Jocelyn used
that opportunity to share that she was dyslexic and explain what it's
like to be dyslexic.
Throughout our journey we have used all of these experiences to
help others understand what dyslexia is--and importantly what it isn't.
Resources like the Understood.org and the National Center for Learning
Disabilities have helped us along the way.
These last 13 years taught me that while the educational system is
not created with dyslexics in mind, with the right information,
training and support for students with dyslexia can thrive.
I can say that I am a better mother and person because of our
journey and that Jocelyn's future is limitless because she is an
amazing young woman with much to give the world.
Senator Cassidy. Thank you.
I get to ask questions first. We each have 5 minutes.
Dr. Eden, in your written testimony, you talk about how
your daughter didn't want to take that ``stupid test.'' She
didn't want to do it. There's kind of a theme here that all
these children who are dyslexic will say that they are--there's
this anxiety, et cetera. She actually read adequately so that
she was not identified as needing intervention. Once you had
the intervention, she went from 16th percentile to 75th
percentile. I'm struck that she could have kind of moved around
in the middle, never being recognized. It was only the
concerned parent that was able to do so. Would you elaborate on
that?
Ms. Eden. Senator Cassidy, once you have children, you
learn all sorts of things that you thought you knew as a
researcher. One of the things that I learned is that the kind
of testing that we do in the laboratory is very different from
the kind of testing that goes on in the schools.
A child who has strong vocabulary skills can do very well
in our school systems, and a child who is high-achieving
otherwise can look OK when they're reading text with pictures
next to it. When you put them on standardized tests the way we
use in our research to really understand fully all the
different facets of reading, the different aspects of reading,
you can see where there are weaknesses, and you can see that
those are the weaknesses that are interfering with her ability
to learn and read the material that she is being given.
One of the things I certainly learned is it's such a
complicated field, and for a parent, even a parent like me, who
has served as the president of the International Dyslexia
Organization, who runs a brain imaging center, I was stunned at
how confused I was between the difference of what I saw in my
child at home and in the school in using the kinds of testing
that I was familiar with. People need to understand what those
different things are and how we use all those different sources
of information to identify and help our children.
Senator Cassidy. Dr. Shaywitz, if the woman who does the
research and is the president of the organization is confused
regarding her daughter--I have a daughter, too, so maybe that's
just an issue with daughters. That said, it kind of begs the
question whether we should allow this to be discovered by a
teacher observing, or whether it should be something we should
screen for. How difficult would it be to screen children at
first grade for the presence of dyslexia?
Dr. Shaywitz. I don't think it would be difficult. It
should be mandatory. Too many children are being missed. As I
showed in the slide, we reported in October on the basis of a
longitudinal study that the achievement gap is not only present
in first grade, but it's very large and it doesn't go away.
There are many different----
Senator Cassidy. That's not a reading gap. That is an
achievement gap.
Dr. Shaywitz. That's correct, and it can be done--we at the
Yale Center are just in the process of publishing a screening
instrument that teachers can use and that takes a few minutes.
There are other methods. The important thing is to think of
it--it's not a developmental lag. It's not going to be
outgrown. It's not because he's a boy or because he has a
December birthday.
Too many children are missed, and that's really a tragedy,
because, as we heard Ameer so eloquently talk about, what it
feels like when you're in school and you have to read aloud and
the reactions of the other children. Teachers have to recognize
that and also listen to parents, because parents see the child
and see the struggle when they get home. I don't think it would
be difficult at all. The important thing is awareness, to be
aware that it's already there, and then to take action.
Senator Cassidy. Ameer, you were in public school--and Ms.
Hanrath. Teachers--your child, you, were having difficulty
reading. How did your teacher intervene, or did she or he
intervene?
Mr. Baraka. I never had a teacher to intervene. I was just
sort of passed on from grade to grade to grade, and looking
back, how awful that was, because someone should have taken
notice that I could not read. I see those same patterns right
now today. I deal with kids where I talk to the principal about
kids who have dyslexia, and they can't do anything about it
because there's no resources for those kids. Those kids are
either kept back or just passed along, just like I was.
If we don't address this problem, I think we'll see a
tremendous surge in violence, a tremendous surge in
incarceration. If we do address this problem, we can curtail
the prison population and violence as well.
Senator Cassidy. Ms. Hanrath, were your child's teachers
prepared? How did they respond?
Ms. Hanrath. My child's teachers did not even recognize she
was dyslexic. Her first three teachers were first year
teachers, and so they viewed her, the way that she read, as
just the fact that she was young in her classroom. Her fourth
grade teacher viewed Jocelyn as a behavior problem and said
nothing about her dyslexia. She felt that Jocelyn perhaps was
not as bright as the other children, and I knew that couldn't
possibly be true. I actually took it upon myself to have her
tested, and that's when I found out she was dyslexic.
Senator Cassidy. I got you.
Senator Mikulski.
Senator Mikulski. Each and every one of these testimonies
were so compelling, and we could spend all morning just talking
to one of the people at the table. I want to thank you, really,
for your contribution already.
I'd like to turn to Mr. Baraka. Sir, your testimony is so
much like what we see in Baltimore. Dr. Mahone works at Kennedy
Krieger, and if you look out the window at Kennedy Krieger over
in east Baltimore, on one side, 12 blocks down, you look toward
the harbor, and people are doing very well and very prosperous.
If you look on the other side, it's usually in our poor
neighborhood where drug dealing is going on.
We have real issues in Baltimore, and we're always accusing
our schools as failing and our kids as failing. What you lived
through is kind of what we hear every day.
Right, Dr. Mahone?
My question to you is here you are. You were a rough and
tumble guy in the streets and neighborhoods, and they were--the
streets became your friend, and the streets became your
teacher. What would have helped you, and when, to make a
difference?
Mr. Baraka. In my opinion, early detection would have
definitely deterred the road that I chose. Like I said, my
brother and my sister were excellent students. They both went
off to college.
If I had someone to put me in a program, such as the school
that Senator Bill Cassidy and his wife has, I would have
definitely--as I was walking from the hotel--I was telling a
gentleman earlier--and I'm walking to the Capitol, and I'm
looking at this vast amount of property and these big
buildings, and I said, ``Oh, my God. I could have been here.''
I could have been sitting where you are had someone caught me
early on. I always knew----
Senator Mikulski. You're a Louisiana guy. You would have
been him.
Mr. Baraka. Yes, yes.
[Laughter.]
I don't want to take his job. I always felt as though I was
someone, but it stayed dormant. When I got to prison, I guy
told me how brilliant I was, because I was telling him about
how----
Senator Mikulski. Who was this guy?
Mr. Baraka. His name was Norman Spooner. He was an
incarcerated person. I was telling him how I would get drugs
from California and bring them down, et cetera, and he said,
``Man, you know what? You're brilliant. You are somebody.''
Senator Mikulski. You are brilliant.
Mr. Baraka. I never heard someone tell me that I was
brilliant and that I was somebody.
Senator Mikulski. In prison, you read Malcolm X.
Mr. Baraka. Yes.
Senator Mikulski. How did you get started in prison? Was
there an evaluation of you in prison?
Mr. Baraka. Yes.
Senator Mikulski. You read Malcolm X?
Mr. Baraka. Yes. When you enter into a prison, you have to
be tested. Everybody has to be tested, and I was found to be on
a third grade level. I read Malcolm X's book. I floundered
through that book, but I understood what Malcolm stood for, and
I understood what Malcolm did. I was facing a 60-year prison
sentence, and I said to myself--I said, ``God, if I get 60
years''--which I was guilty--I said, ``I'm going to educate
myself some way, somehow, because I want to emulate Malcolm X.
I want to do something for my people, because he did it.'' I
saw that many people behind me were taking the same pathways,
and it was a burden on me to get out of prison and tell young
people, ``This is not the way. This is not the way.''
Senator Mikulski. Did prison teach you to read?
Mr. Baraka. That's where I began----
Senator Mikulski. Were you self-taught in prison?
Mr. Baraka. I was self-taught in prison, yes.
Senator Mikulski. There wasn't a program that said, ``Well,
this guy Baraka is pretty smart. He's reading at a third grade
level.'' Was it, again, the sort of bigotry of low
expectations--African American male, drug dealer,
manslaughter--oh, we know that profile? You know how that
narrative goes.
Mr. Baraka. Yes. Absolutely. Absolutely.
Senator Mikulski. That stereotypical narrative.
Mr. Baraka. Absolutely.
Senator Mikulski. Did anybody say, ``OK. We've got that.
Let's find out why.''
Mr. Baraka. No. There was no hope for me there.
Senator Mikulski. Was this a State prison?
Mr. Baraka. Yes, a State prison.
Senator Mikulski. Do you feel--and this isn't meant to be
peppering you. Just in my short time here left in the
questioning, do you feel--because, unfortunately, prison is at
the end of the pipeline. We would want this early screening so
much sooner. Do you feel that for many of our men and women in
prison, this is one of the areas that--if we want to prevent
recidivism and do second chance, along with criminal justice
reform--that, really, different kinds of evaluation when you
come into prison would be helpful?
Mr. Baraka. Absolutely.
Senator Mikulski. A real intervention.
Mr. Baraka. Absolutely. This is a Titanic area, because, as
I said, many guys in prison cannot read. You can make a lot of
money when you can write letters. A lot of guys--there are some
guys who can read and write, and they make a lot of money
writing letters for other guys. A lot of guys in prison are--I
don't know if they're dyslexic, but they cannot read.
What I did was I wrote down words. I recall my lawyer
telling me about the circumstances of my case, and he gave me a
pen, and he said, ``Write circumstances down.'' I could not
spell that word. Every word that I know--I don't know about
phonics. I can't break words down. I know that word because
I've written that word down over--and said that word over and
over and over again. I don't know anything about phonics. It's
completely--it's out of my mind.
Senator Mikulski. It's not your thing.
Mr. Baraka. It's not my thing. I don't know it. I know
words because I've written that word down. I had a pile of
words I would write down every day, just stacks and stacks of
words, and go over them day to day.
Senator Mikulski. And then you memorized them.
Mr. Baraka. Then I memorized the words. If we could get
something like this in a prison institution and help men to
build on their phonics, we could--again, as I said earlier, we
can reduce that, because it gives you--when I learned to read,
there was this joy, there was this hope that I am somebody,
that I can do something.
It gives you encouragement. It gives you motivation to say,
``You know what? I can read.'' That's one of the most powerful
things in the world to do, is to read, to read. It is a
blessing to read. Now that I read, I read all the time. I'm
reading Sally's book. I'm excited about reading.
Senator Mikulski. Thank you very much. My time is up. I
have many other questions for the witnesses. I hope we get a
second round.
Senator Cassidy. Senator Bennet.
Statement of Senator Bennet
Senator Bennet. Thank you, Mr. Chairman. Thank you very
much for holding this hearing, and thank you to the panel for
your excellent testimony.
Mr. Boies and Ms. Hanrath talked about the importance of
early detection, and Mr. Baraka shared his views about the cost
of not having early detection. I remember extremely well my
parents sitting me down and telling me that I was going to
repeat the second grade and my deep disappointment that my
friends were leaving me behind. I remember the year I spent in
that second grade classroom tracing letters that were glued to
cardboard cards.
In the end, that hard work--as Mr. Boies talked about and
Mr. Baraka also talked about, that hard work and the
intervention allowed me to compensate for my dyslexia, and I'm
sitting here today, partly, because of that early detection,
and I wonder if the panel could talk a little bit about how we
do a better job--we're doing a lousy job of detecting this--and
how we share best practices across school districts and
schools, and whether a far greater commitment by this country
to early childhood education, a high-quality early childhood
education, might actually help us wrestle with this problem as
well.
I don't know who would like to go first. I'm happy to--Dr.
Mahone.
Mr. Mahone. I agree that early identification is really
critical, and I agree that it should be something that all
school districts have in place, and the truth is that it isn't
happening in many school districts. And when it is, it
sometimes isn't happening effectively.
I agree that it needs to be at the level of the local
school system to implement it, but it also needs to be at the
level of the leaders of those school systems to make sure it's
implemented with fidelity appropriately and developmentally
appropriately and to be able to translate the material that has
been generated by the researchers here and at other places into
the hands of the people who would be screening four-and 5-year-
olds.
There's also the issue that we are moving toward more
universal pre-K, and the dearth of training that we see in
appropriate screening for dyslexia at the level of 5 years old
or 6 years old--it's even more challenging when you get
younger--and we don't have in place as good of programs for
preparing our pre-K teachers to be ready to screen and work
with children who may be experiencing some of the risk factors
and some of the early signs of dyslexia that emerge sometimes
as early as 4 years old and before and can be detected. Our
pre-K teachers and our kindergarten teachers need to be trained
in developmentally appropriate methods.
Senator Bennet. Dr. Shaywitz.
Dr. Shaywitz. Before we do any of that, there has to be
greater public awareness of what dyslexia is. It's not just
training people and administering a measure, but to understand
the whole of it.
You mentioned you don't know phonics, but you read.
It becomes very, very important for teachers--as several of
us here are physicians, we go to medical school, but then we do
internships and residencies, where we take care of people under
supervision. I think, in a way, that the education of educators
needs to expand so that they learn in class, but they also
learn from experience, so they see people who are dyslexic are
not stupid and are not ignorant, and to be able to then use
screening measures--they are available--and not to look at
reasons--oh, well, this child is this, and this child is that--
but to actually use the screening measures themselves.
Senator Bennet. Thank you. I'm running out of time here. As
a former school superintendent, I also listened to some
testimony today, from Dr. Mahone, about the importance of
treating the whole child. Many children with disabilities talk
about how they dread going to school, and they experience a
level of stress, we heard about from Mr. Baraka, as a result of
their disability.
I wonder whether you could talk a little bit about what the
emotional and mental effects of learning disabilities are in
young children and how we can better support the full range of
children's needs.
Mr. Mahone. Thank you. It's complicated because children
with dyslexia can present with a complicated picture, including
associated concerns and conditions ranging from anxiety and
lack of motivation, and when you experience failure, it gets in
the way of motivation. There are a number of risk factors that
we know that go along with dyslexia, along with a number of
conditions, real other conditions that seem to coexist with
dyslexia that complicate the picture.
It isn't as simple as just looking at the reading and
looking at the experience of this child and why a child might
be failing. A child might be failing for reasons that go beyond
the dyslexia, including living in poverty, having poor
opportunities to have really quality instruction, having other
kinds of psychopathology that may interfere with learning in
other ways. That's not dyslexia. It's something different, but,
nevertheless, the result is poor achievement.
Senator Bennet. I'm out of time, Mr. Chairman, so I will
yield back. Thank you.
Senator Cassidy. Thank you.
Senator Murphy.
Statement of Senator Murphy
Senator Murphy. Thank you very much, Mr. Chairman and
Senator Mikulski, for having this hearing.
Let me just add a story to the mix here. It's a constituent
from Newtown, CT. She noticed early on that her son, Brian's,
preschool years--during his preschool years, he had a speech
delay and that Brian struggled to learn letters and early
literacy skills in kindergarten, first, and second grade.
Despite her concerns, and, frankly, her family's history of
dyslexia, her son didn't receive an evaluation for special
education services until the end of third grade.
This is standard, in part, because tests don't start until
third grade. At this point, Brian's teacher told her that he
didn't make any progress in reading between second and third
grade, and he was way behind his peers already. Once he was
evaluated, he was found to have ADHD, dyslexia, but also a high
IQ, and he received specialized instruction and accommodation,
but learning to read was rocky.
Eventually, Brian was able to decode words and read. He
still struggles today. He's 19 years old, and he's doing well.
He's studying mechanical engineering at the Rochester Institute
of Technology, and he's a competitive speed skater. He's
accomplished. He had to work and his parents had to work
especially hard, because it took so long and they had to fight
so hard to get him the appropriate programming.
I'm totally on board with the idea that we need to do
better, that this is a crisis, as Dr. Shaywitz says, and I hear
it every day in Connecticut. I guess here's my only question,
and I'll pose it maybe first to Dr. Shaywitz and then ask Dr.
Eden and others to remark on this.
What we know--and I'm sure it's been said--is that 80
percent to 90 percent of students with learning disabilities
have dyslexia, and it's also, often co-occurring with other
disabilities. How do we elevate and do better by way of
treating dyslexia without minimizing other disabilities that
kids walk into school with? How do we make sure that we do
everything that you want us to do without picking dyslexia out
of the pot of disabilities that kids are struggling with and
have this debate end up in a result that robs Peter to pay
Paul?
I know that that's a tension here, right? That's a tension,
and so let me ask, in particular, Dr. Shaywitz and Dr. Eden to
talk about that. How do we focus the attention on dyslexia
while not misunderstanding the fact that there are a lot of
other disabilities still that we can't ignore at the expense of
tackling this epidemic?
Dr. Shaywitz. That's a great question. First of all, let me
say that every child should get what they need. What's really
important is that this hearing is about science informing
education. When we have the science, we have to use it. If we
have a drug for breast cancer and not for pancreatic, we can't
say, ``Well, we can't use it until we can treat all the
cancers.'' We have to use it when we have it.
In the case of dyslexia, we have the knowledge. In my own
mind--you're aware, Senator Murphy, that two children committed
suicide in Connecticut because of their dyslexia. They were
bright. They were in special ed. They were teased. They saw no
future. We have to use the knowledge we have.
On the other hand, there are other disabilities, and
they're important. We have to make sure the science progresses
so it teaches us what we need to know to give the better--I
would say optimal, but I know in policy it's the appropriate
education to these children. We shouldn't hold the dyslexic
children back because we don't have the knowledge to treat the
others. We have to make sure we are maximizing the education of
all the children who have disabilities.
As a mother and as a grandmother, I know how I worry and I
care about my children and grandchildren, and mothers of all
children, and fathers, feel the same way. We have to use the
knowledge we possess and have to make sure we do it for all
disabilities. When the knowledge isn't there--and for many of
the disabilities, it's not there yet--we have to make sure that
we work to ensure that we acquire that knowledge.
Senator Murphy. Dr. Eden, a quick response?
Ms. Eden. Thank you, Senator Murphy. The other thing to add
here is that the focus on dyslexia in research has really
opened a lot of eyes in terms of understanding about teaching
reading in general. I would say that many children have
benefited by there being more information about best practices
about teaching reading.
Also dyslexia really serves as a model of understanding
disorders more generally. How do you work with the school
system? How is it that the research that has shown the kinds of
measures that you can use to identify dyslexia early--why is it
that they are in the hands of teachers, and when the teachers
are given those and are using them, they're not using them the
way the researchers intended? There's a communication--there's
a gap here, that the tests are there, but they're not being
implemented.
On the other hand, there are some individuals who are
getting the help that they need. They go perhaps for expensive
programs, but they also go for programs that are expensive and
don't work. We have another very interesting problem here,
which is that in the absence of knowledge, in the absence of
research, in the absence of educating people, in the absence of
people understanding what this is, parents will take it upon
themselves to try everything they can on the Internet, often at
a high cost and with no benefit to the children.
These are all problems that you have with any kind of
situation where a child is failing to reach their potential.
Dyslexia serves as a model to help us understand the full range
between education, the role of the parents, the role of the
teachers, and the role of private enterprise, and how people
need to be educated so those things can be optimized to
actually help the child.
Senator Murphy. Thank you.
Thank you very much, Mr. Chairman.
Senator Cassidy. Senator Warren.
Statement of Senator Warren
Senator Warren. Thank you, Mr. Chairman, and thank you,
Senator Cassidy and Senator Mikulski, for your passion, for
bringing this issue up, and for your advocacy on behalf of
those who are affected by it.
One area that I know that all of us are very much in
agreement on is that we need education for biomedical
innovations, the need for increased investments in research in
this area. We've already learned a lot about dyslexia from
research funded by the Department of Education, the National
Science Foundation, the National Institutes of Health through
the National Institute of Child Health and Human Development,
which was a vision of President Kennedy.
Investments in research through these agencies mean that we
now have some evidence-based interventions that are leading to
improved educational outcomes for our kids with dyslexia across
the country. There still is a lot that we don't know.
Dr. Mahone, I'd like to ask you about this. How would
greater Federal investments in research like yours into the
neurological underpinnings of dyslexia help us both intervene
earlier and improve outcomes for our kids?
Mr. Mahone. Thank you. We are on the verge of treating
educational research and the translation between biomedical
research and education in the same way we are looking at
translational research in the field of medicine, meaning that
we've learned a lot about the condition. We've learned a lot
about the neurobiology of the condition, about the genetics of
the condition.
The next question is: How do we translate what we've
learned into practice that really gets at the root of the
problem? We are on the verge of that right now. We have come a
long way with a tremendous amount of support from the Federal
Government to get to the research that we have right now. Going
forward, we need continued support in order to continue to
translate that into the day-to-day practice of our children and
improve their lives.
Senator Warren. Good. Thank you. I really appreciate you
talking about this. Whether we're talking about Alzheimer's or
ALS or cancer or dyslexia, we know that one of the smartest
things that the Federal Government can do is invest in
research. The NICHD supports neuroscience and learning
intervention research to determine how to identify dyslexia
early on and how to support the needs of students with learning
disabilities.
Over the last 10 years, Congress has decimated the budget
for NICHD, cutting its purchasing power by nearly 20 percent.
Researchers are being limited because Congress won't give them
the resources that they need. Right now, the Senate faces a
critical choice, whether to come together in a bipartisan way
to provide sustained, stable, and targeted increases for
medical research at the NIH, or just to say, ``It's too hard.
Let's go on summer vacation.''
Senator Cassidy and I have talked a lot about the
importance of NIH funding, and I know we both agree on the
urgent need to find a bipartisan way to get this done. I hope
we can get there, because today's hearing is just one more
example of why fixing our research funding problem is just too
important for us to walk away.
Mr. Chairman, I have a second round of questions, but I'm
glad to put it off and wait my turn, or I can do it now. Your
choice.
Senator Cassidy. We're going to have a second round.
Senator Warren. Then I'll hold off.
Senator Cassidy. You have a minute and 15 seconds.
Senator Warren. I'll yield back and go to my next round.
Thank you.
Senator Cassidy. Senator Casey.
Statement of Senator Casey
Senator Casey. Thank you, Senator Cassidy and Senator
Mikulski for having this hearing. We're grateful to have this
opportunity. We don't often have the kind of opportunity we
have today to focus on one issue in a very intensive way and to
have a--we have a lot of great panels here, but this is,
indeed, an all-star panel for a lot of different reasons. We're
grateful for the opportunity.
I won't get to each of our witnesses, but I did want to
start with you, Ms. Hanrath, to commend you for taking the time
to be here today, for your testimony, and to bring your own
personal story and that of Jocelyn to this committee. We learn
a lot when we read about public policy and analyze data, and
that's part of the learning process for us. It's all the more
significant when you can bring your own personal story.
Jocelyn, I want to say to you congratulations on both your
academic and athletic achievements. I always wanted an athletic
scholarship in college. It just wasn't in the cards.
[Laughter.]
It's difficult to do one--to be recognized for one versus
the other. To have both academic and athletic achievement is
significant.
I want to ask you a more technical question about
transition to college, transition to higher education. I did
want to focus, first of all, on your three points, because
sometimes we leave here and we've learned a lot, but then it
begins to fade over time. It's important to remember those
three concepts: identify, train, and set high expectations, all
three critically important.
If I were adding a fourth, I'd say try to get a good mom,
because I know that some children never have that opportunity
to have a mom or a dad or a caregiver who is so engaged as you
have been and to be that advocate. You've turned her into her
own self-advocate based upon your testimony. We're grateful for
that. We do want to bear in mind those three core messages of
identify, train, and set high expectations.
My question is more technical. My staff and I have heard
from folks in Pennsylvania about this transition from high
school to college and having strong transition services
important to students with a learning disability. What's your
experience with that? What can it tell us about either--not
just your own experience, but what you would hope we would do
to fill in some of the gaps if there are some?
Ms. Hanrath. Thank you, Senator, for the question. First of
all, our experience is a bit different. Because Jocelyn is an
athlete who is wanted, the transition has been very simple. We
immediately started talking to the special education
department, who was very open to whatever Jocelyn needed. They
were willing to accept her IEP from high school, which is not
common.
At so many colleges, the students are asked to go back and
re-test in order to receive accommodations in college, which
was shocking to me, because I am not a doctor, but when Jocelyn
received her diagnosis, one of my first questions to the
neuropsychologist was: If I get Jocelyn a lot of help, will she
stop being dyslexic? She said, ``No. She'll always be
dyslexic.'' I couldn't understand why an IEP in a high school
would not be adequate for a college to accept that as a
learning disability.
In Utah, for example, Jocelyn's special educator has a
caseload of 40 students. Her transition work is basically a
checkbox. Once a year, someone comes in, talks to Jocelyn for 5
minutes and says, ``Are you going to college? Are you taking
classes? Good job,'' check the box and that's all. There is not
really anything given to us in Utah as far as transitioning to
college.
Once again, because of Jocelyn's athletic accomplishments,
when we talked to the athletic department, whatever she needed,
she could have. It was very simple. It is not that simple for
most kids, and it's impossible for them to, many times, re-test
because the testing costs so much money to be able to access
special education in college.
Senator Casey. I appreciate that perspective. What we often
try to do here by way of legislation but also by way of
something much more substantial in the case of Every Student
Succeeds--it was a great effort by this committee to take No
Child Left Behind and reform it, shake it up, and change it,
and a lot got done.
I was just looking at a list of things that might be
applicable here: a center to develop assessment tools to
support the identification of students with disabilities,
including dyslexia; evidence-based instruction materials;
professional development. We have the outlines of it, but I
also want to make sure that we're not missing a piece when it
comes to that transition, but, in particular, having that IEP
not be adequate and having new evaluations done which might be
difficult for a lot of families.
I'm out of time, but maybe what I'll do is pose a question
for the record to the other witnesses so we can get at this
issue.
Mr. Chairman, thank you very much.
Senator Cassidy. We'll have a second round, and I'll begin.
Mr. Boies, first, I'm struck. In your written testimony,
you speak about how your dad kind of would verbally teach you
just a Socratic method, and so you didn't need to read, and you
could just kind of download everything your dad knew about
history. That sort of thing. Then you describe how your son for
10 years had 4 hours of tutoring every day. Now, that takes
some courage and determination.
In your last paragraph, some students with families that
can afford the best; they're fortunate to have their dyslexia
identified, understood, and treated early. The vast majority
are not so fortunate, and their future contributions are at
risk.
Senator Warren and I mentioned briefly this is really an
issue of middle-class economic opportunity. Your thoughts on
this?
Mr. Boies. The right to an education is one of the most
basic civil rights that we have. That right should not be
inhibited by the economic circumstances of a child's family. I
have been very fortunate, and I could give my children the
opportunity to be tested early, to get tutoring, to have all of
the advantages that modern science can give.
Most children are not that fortunate, and we as a country
are terribly wasting those resources. It is unfair to the
child, and it is a disaster for this country in a global world
to lose those resources. By identifying people early and by
giving them the help and the hope that they need to succeed, we
can give them that basic civil right of a decent education, and
we're not doing that now.
Senator Cassidy. I'm struck. It's not just someone like Mr.
Baraka, who obviously has a tragic story but finished well.
It's also Dr. Eden's daughter, who was a promising girl who was
going to be allowed to achieve less because they did not know.
If we have 20 percent and Dr. Mahone said there's not many
districts screening. I'm not sure there's any districts
screening. As best we can tell, there's not a single district
that screens all incoming students for dyslexia.
If you've got a condition affecting 20 percent in one way
or another--Mr. Boies, you're an attorney. You spoke of civil
rights. Is it excusable that we're not screening? This is not 1
percent or 2 percent. The cost-benefit ratio here is pretty
substantial.
Mr. Boies. Senator, it's inexcusable, because we have the
technique to do that. We can do that in a cost-effective way.
It's a question of education. It's a question of commitment. We
could do this for a fraction of what we spend on lots of other
things that are much less important and much less critical to
children and to our country. We have the ability to screen. We
know how to do it. We could implement it in a cost-effective
way. We're just not doing it.
Senator Cassidy. I know that it costs about $50,000 a year
to incarcerate somebody. If you broke down the siloes and
somehow said, ``Well, heck, we could redirect some dollars,''
it would make quite a difference.
Mr. Boies. It is the definition of penny-wise and pound-
foolish.
Senator Cassidy. Yes. Your child, if I may ask--was he
identified early by a teacher, or was it just because of your
family history that you knew to watch for early signs of
dyslexia?
Mr. Boies. It wasn't so much the family history. He was a
twin, and his brother, Jonathan, was very verbal and in
kindergarten was reading and very phrasal, and Christopher was
struggling terribly. The sharpness of that comparison led us to
have Christopher tested, and when Christopher was tested, that
was the time I was first diagnosed with dyslexia.
That testing led to the tutoring, led to the help, led to
the hope, because he knew what it was. He knew it didn't affect
his intelligence. He knew he could conquer this, and he did. As
I say, he performed well in high school. He performed well in
college, although we had a hell of a time getting into it, and
he performed great in law school, although, again, his
standardized tests--because he did not get accommodations--
predicted that he would fail. He graduated from Yale Law School
with honors. His LSAT would have predicted that he couldn't
have succeeded.
Senator Cassidy. The standardized testing option. I thought
what you said was very provocative. I'll defer now to Senator
Mikulski.
Senator Mikulski. Thank you very much. I want to associate
myself with the remarks of Senator Warren in terms of the need
for more biomedical research. Also I want to go back to my
original remarks. We need to put that research into action, and
then when you look at the way we do not fund programs like
IDEA, then groups with learning challenges are pitted against
each other for resources, the very things that we just talked
about here earlier. We need a multifaceted approach here, just
like we do with the children.
Dr. Eden, let me go to some of your research findings. I
was struck by what you said, that there were different
neurological aspects to girls compared to boys. Could you
elaborate on that? In my early days in the Senate when I came
here, women were not included in the protocols at NIH. This was
1986, not 1886. Working together across the aisle with Dr.
Bernadine Healy, Dr. Ruth Kirschner, and so on, we were able to
change that, which validates exactly this.
Could you tell us, though, what your findings are? Because
you'd think the brain is the brain, that it's kind of--the
brain is gender neutral.
Ms. Eden. Thank you, Senator Mikulski. This is an example
where brain imaging research really has a lot to add and we can
get some insight, because brain imaging research has shown for
years that the brains of women and men and boys and girls are
different. They're different in their anatomy. There's
difference in the hormones that bathe the tissue, and it also
goes hand in hand with some of the differences that we observe
in boys and girls as they develop early on.
The important part here is to recognize that early
research, for reasons that aren't fully clear, often did focus
more on boys. The deductions that were made from that research
were that these were findings that were true for all
individuals with dyslexia, and they were generalized to all
people with dyslexia.
We're beginning to focus more on sex-specific differences,
and the NIH now requires that when we submit research grants,
that we consider biological variables such as sex so that we
have very specific questions about--do the kinds of questions
we're asking, the hypothesis that we're posing in our
research--are they also addressing the issue that there are
sex-specific differences, and is that part of our hypothesis.
That's tremendously important.
Senator Mikulski. How has this manifested itself?
Ms. Eden. What the real point here is, is that we don't
fully understand how it's manifesting. It could be that--we
know from cognitive neuroscience that sometimes we observe
performance in males and females and they appear to be equal.
Under the surface in the brain, the mechanisms that invoke to
do those tasks are very different.
Then you ask the question: What happens if those mechanisms
then interface with a learning disability? How do the female
brains respond versus the male brains? We don't really--we
don't have the answer to those yet, because we haven't done the
research. Doing more research in that area is really very
critical, and we'll see a lot more research because of the new
NIH mandate.
Senator Mikulski. Thank you.
I'm going to turn to--let's hear it for the mothers with
Ms. Hanrath. I'm going to call you like a nighthawk, because,
obviously, you and other mothers and dads stay up at night,
kind of cruising the Internet, avoiding scams and schemes, and
yet trying to come up with approaches. Could you tell us what
worked for you as a mother, even to know what to do and so on?
You mentioned the group, Understood. Also, you paid for your
own testing for your daughter, which was, obviously, extremely
expensive.
What did you run into? How can we help--at least a pathway
for moms and dads--regardless of social class or whatever, to
do this? Could you elaborate on your personal exploration here
on how to help your daughter? What helped? What were the
obstacles? What was your best friend? Was it the Internet?
Ms. Hanrath. Certainly. At the very beginning, when my
daughter was actually tested by the school district at the end
of fourth grade. Her grandmother had died the week before they
tested her. They came back with the results that she had an IQ
of about 80.
Senator Mikulski. Eighty? Eight zero?
Ms. Hanrath. Eight zero, and that she would not ever
succeed in school because she was not very bright. I said that
is absolutely not true, and I found a neuropsychologist to redo
the testing. Once that happened, then I had to go through the
phase of--I always thought dyslexia meant you mixed up your
letters. I had no idea that it was----
Senator Mikulski. Senator Cassidy, if I may--Ms. Hanrath,
you said, ``I found a neuroscientist.'' You don't go to
Craigslist for that, you know? You don't say, ``Oh, well, let's
go find a neuroscientist, after we get our refrigerator or
toaster oven fixed.'' Tell me, in other words, how did you do
that?
Ms. Hanrath. I did that because I have an older son who
also has learning disabilities, and he had a specialized tutor.
I went to the tutor, and I said, ``Who is it that I should have
my daughter tested by?''
Senator Mikulski. I see. You were essentially on your own.
Ms. Hanrath. Yes. It was on my own.
Senator Mikulski. Did you have, where you live, an
institution like Kennedy Krieger you could have turned to?
Ms. Hanrath. No, there really isn't anything in Salt Lake.
There is a place at the University of Utah with graduate
students, but I wasn't comfortable with that.
Senator Mikulski. Right. Here, we have Georgetown to turn
to. We have Kennedy Krieger. We would have in New Haven the
Yale Center and the Shaywitzes. But you were on your own, and
you did this through a tutor.
Ms. Hanrath. Yes.
Senator Mikulski. And you got the results.
Ms. Hanrath. Yes. Then I decided that I had to come up with
a solution. The neuropsychologist was wonderful. She gave me 23
pages of accommodations. When I went to my first IEP meeting, I
took those 23 pages in, and I said, ``I want you to accept all
of these.'' No one argued with me. It was immediately attached
to Jocelyn's IEP, and I kept those accommodations, and whenever
Jocelyn needed a specific one, we invoked the IEP.
I was fortunate enough to have the money to have her
tested. Unfortunately, I was not wealthy enough to have daily
tutoring for Jocelyn, so I had to rely upon the school system,
but mostly myself, my inventiveness.
Senator Mikulski. Could we ask about Understood and what
that meant? Because, you see, what we have here is a path
that--look at the struggle here. Could you just tell us about
Understood?
Ms. Hanrath. I would love to tell you about Understood. I'm
a single mom. At night, I would wake up. I was worried about
Jocelyn. I didn't know what to do.
Senator Mikulski. So you were a nighthawk.
Ms. Hanrath. I was a nighthawk. I had to be, because I
wasn't sleeping. I found this incredible website called
Understood.com, and I could plug in the fact that Jocelyn was
dyslexic and what age she was, and I could read about it. Then
there were parent forums and I could talk to somebody at 3
o'clock in the morning, someone who understood where I was
coming from and that would get back to me.
I could watch videos from experts. I could listen to
archived sessions on dyslexia. I started to become educated,
and education is the source of all power, and that's where my
education came from.
Senator Mikulski. Thank you, Senator Cassidy. You are very
generous. Thank you.
Senator Cassidy. Senator Warren.
Senator Warren. Thank you, Mr. Chairman.
Thank you, Senator Mikulski, for your remarks on research
and the importance of making sure that we have adequate NIH
funding.
Also, thank you, Dr. Eden, for reminding us of yet more
reasons why this research is important.
I just want to ask--I want to turn to a slightly different
issue here and talk a little bit more about what we're learning
from the research and to training teachers for the classroom.
This is a special topic for me, because I was a special needs
teacher a long time ago.
Ms. Hanrath, let me start with you. First, congratulations
on your daughter's graduation, impending graduation, from high
school. I know you are very proud.
Jocelyn, way to go. It is good to have a success story
here. We're delighted to have you here today.
In your testimony, you talked about the importance of
supporting educators by giving them training about dyslexia and
other learning disabilities. Can you talk just a little bit
more about how important it has been to you and to your
daughter to have special education teachers with the tools and
training they need to support your daughter's learning needs?
Ms. Hanrath. Thank you, Senator. Without Carrie Szumnarski,
there was no way we could have navigated through high school.
She talked to Jocelyn's teachers. She gave Jocelyn confidence.
She went to meetings with Jocelyn and I. She stood up for
Jocelyn's rights. She knew things I didn't know. If we did not
have Carrie, if Carrie was not educated, as I said, I do not
believe the success would have happened for Jocelyn the way
that it did.
I find it really frightening that so many teachers are not
educated about dyslexia, that they assume that dyslexics are
stupid people, that they shouldn't expect much of them. They
need the education. They need to understand that dyslexic kids
can do amazing things. They think outside the box. They're
leaders by nature. It doesn't take much for accommodations.
They don't have to cost a lot of money. Everything isn't high
tech.
Please, please, find a way to let all teachers understand
what dyslexia is and how they can help. It doesn't take much,
but, once again, it requires an education.
Senator Warren. Thank you. That's very important, Ms.
Hanrath.
Maybe that means I can turn to you, Dr. Eden. How do we
equip all teachers and all school leaders with the training and
the development they need to serve students with dyslexia?
Ms. Eden. Thank you, Senator Warren. That is, of course,
the big question here, and that's where we will need more
resources, and we need to make some changes in the way people
think about their role in all of these things. It's very
frustrating as a scientist to see.
There are tests that are out there that predict to a very
high degree which children are at risk for reading. Those same
research data have made it into benchmark tests that are in
schools, in my daughter's school. When you ask the teacher how
your child is performing on those tests, it turns out they
haven't looked at those test results, probably because
somewhere the research fell short in trying to apply this and
to educate the teachers to use it effectively.
One of the problems we have in research is that we don't do
enough to make sure that the findings that we have are
implemented in a way that they are actually useful. Again,
you've put in a lot of money. You have the information, but
it's not going the full length to actually then benefit the
child who needs those to be identified.
The other risk that we run here is that if we don't
continue doing the research--remember, I said we don't have
enough--we still don't quite understand how dyslexia actually
comes about. Others will fill that void. Parents are online all
the time. Doing an evaluation is expensive. You think that's
expensive. Getting the treatment is really expensive.
Then you find an alternative. Maybe it's not quite as
expensive. It's based on something that you can do at home.
It's quick. You don't have much time. You're trying to feed
your child. You want them to do something for the little time
you have in the evening. You use a quick fix. It appears to be
something that has research behind it. You don't know. You're
not a scientist. You didn't read the paper. Is it truly
validated?
You grab onto another option. You've made a huge mistake.
You've made a misinvestment. You've used something that
actually isn't research-based, and if we don't do the research
to actually investigate these programs, then there's no
knowledge that we can put out there to guide parents about
which avenue they should pursue.
All of these things have to be moved forward hand in hand.
It's sort of interesting to hear how teachers learn from the
Understood website things you would think they learn in the
schools of education, but apparently they don't. Everybody has
to buy in. Everybody has to understand it's an education, and
everybody has to be ready to learn together and implement the
knowledge that we have together.
Senator Warren. Thank you very much, Dr. Eden. It's very
important. I know from firsthand experience how much support
teachers who work with special needs children need, and we owe
it to them to have their backs in making sure they have the
resources they need, and to have the resources in their
professional development so they can be trained, so they can
understand what they're dealing with here.
We already have a vehicle where we could be doing much more
of this by investing more in title II of the new education law
which supports teacher development. Let's face it, Congress
needs to fully fund the Individuals with Disabilities Education
Act. Senator Mikulski raised this in her opening statement, and
she's exactly right about this.
Congress passed IDEA over 40 years ago to ensure that
teachers would have the necessary resources to support students
with disabilities. Although the program was designed to support
40 percent of the additional cost of educating students with
disabilities, Congress has repeatedly failed to meet this
commitment. That's why I sponsored the IDEA Full Funding Act
last Congress. I would increase IDEA funding over 10 years
until Congress fully meets this commitment.
I've sent letters to the Appropriations Committee about
this. I intend to keep fighting for full IDEA funding until
Congress lives up to our end of the bargain to support our kids
with special needs and their teachers. Our children have
already waited too long.
What I hear today is about everyone has a job. Our kids
work hard if they have the opportunity to do it. Our mothers
work hard. Our teachers work hard. Our researchers work hard.
It's time for Congress to work hard and do our part, too, and
make sure you have the resources you need.
Thank you for having this hearing. I really appreciate it,
Senator Mikulski and Senator Cassidy. This is the kind of thing
that we need to be doing to make Congress work for our
children.
Thank you.
Senator Cassidy. Thank you.
Again, thank you, Senator Mikulski.
Thank you, to all of the witnesses.
Thank you, to those in attendance.
There will be a reception afterwards if people wish to stay
and linger and have further conversation. I'd like the
witnesses--if they have something they wish they'd had a chance
to say but didn't have a chance to say, they may submit it in
writing and have it as part of the record.
The hearing record will remain open for 10 days for
Senators to submit additional comments and any questions for
the record Senators may have.
Thank you for being here today. The committee will stand
adjourned.
[Additional material follows.]
ADDITIONAL MATERIAL
Response to Question of Senator Sanders by David Boies
Question. Importance of Fully Funding IDEA--Today, our schools are
being asked to do more with less. This is unfair for students, families
and educators, especially in an environment of increased economic
inequality where over half of all public school students come from low-
income families.
States, local districts, and the Federal Government have a
responsibility to ensure that our schools have the resources they need
to provide every child an excellent education. Currently, over 30
States are spending less per student than they did before the
recession. Further, we have yet to make up even 15 percent of the over
350,000 jobs cut by school districts due to the Great Recession. Making
matters more challenging is the fact that schools are serving over
800,000 more students than they did in the year 2008.
We know that students with disabilities often need extra support.
Congress passed the Individuals with Disabilities Education Act (IDEA)
to ensure that students with disabilities had a civil right to
education and that schools had the resources needed to meet the
``excess costs'' of providing special education services. Today, the
Federal Government is far short of its obligation to fully fund IDEA,
contributing less than half of the promised 40 percent contribution
necessary to cover the ``excess cost'' of educating students with
disabilities.
Mr. Boies, Ms. Hanrath, and Dr. Mahone, can you speak to the need
of fully funding IDEA and how that would help schools better serve
children with specific learning disabilities like dyslexia?
Additionally, what extra challenges do low-income families face in
trying to get the appropriate services for a child that has a
disability? How can the Federal Government work to support low-income
families that have a child with a specific learning disability like
dyslexia and the public schools that serve these students?
Answer. The good news about dyslexia is that we know how to
identify it, and once we identify it (particularly when we identify it
early) we know how to provide children with the help they need to
enable them to overcome the debilitating effects that untreated
dyslexia can have.
Dyslexia, if properly identified and treated, need not limit a
person's potential. Dyslexia makes it difficult for a student to learn
to read. Because reading is the primary way students, particularly in
grade school, acquire information, if dyslexia is not identified and
treated it can prevent students from acquiring the information they
need to succeed in school. They, and their teachers and parents, often
confuse their difficulty in learning with a lack of intelligence. This
often leads the student, and the student's teachers and even parents,
to become discouraged, and to give up.
Identifying dyslexia enables us to provide students with training
that improves their reading skills and their ability to acquire
information in alternative ways. This in turn encourages students, and
their teachers and parents, to stay the course. In addition,
understanding that the problem is a limited input disability, not any
deficiency in processing, and that as students progress in life,
processing skills (i.e., what a person does with the information the
person has), becomes more and more important, helps everyone to avoid
getting discouraged and giving up. In life, judgment, character, and
commitment are far more important to a person's success that how fast a
person reads; but without an understanding of what the problem is (and
is not) too many people get discouraged and give up prematurely.
Identifying dyslexia will also permit students to get the extra
time on standardized tests that is required to prevent those tests from
massively understating those students' knowledge and ability.
An increasingly large percentage of dyslexic students from well-to-
do families, or who are fortunate to live in a particularly well-
financed school district, are today identified, treated, and enabled to
reach their ultimate potential.
The tragedy is that few children who come from economically
disadvantaged homes and live in less well-financed school districts get
the diagnosis and treatment they deserve. The help they need is
practical. It is promised by the IDEA. But it is lost because of lack
of funding.
Education is a basic civil right. Indeed it is a right that is
essential to making other civil rights effective. By depriving dyslexic
children of early diagnosis and treatment, our educational system (and
our society) deprives these children of this basic civil right--and of
the promise made to them in IDEA.
Response to Questions of Senator Sanders by Mark Mahone, Ph.D., ABPP
First of all, I would like to thank the committee for the
opportunity to provide testimony at the hearing on May 10, 2016,
``Understanding Dyslexia: The Intersection of Scientific Research and
Education.''
In response to the followup questions posed by Senator Sanders, I
am providing my responses below. The original questions are included
for convenience.
______
Question 1. Dr. Mahone, can you speak to the need of fully funding
IDEA and how that would help schools better serve children with
specific learning disabilities like dyslexia?
Answer 1. The explicit intent of IDEA was to provide a free and
appropriate education to all students, regardless of disability status.
At the time that the original law (now IDEA) was passed, Congress
committed to funding 40 percent of the excess costs of educating
students with disabilities through grants to State education agencies
(IDEA Part B). Presently, Federal appropriations only fund
approximately 16 percent of these additional costs. While the
proportion has increased slightly over the past 5 years, current levels
remain far below the 40 percent goal.
I believe that it is unfair for the Federal Government to require
local education agencies to provide ``appropriate'' services to all
students with disabilities, but not appropriate sufficient support for
implementation of these services. To this end, I believe it is critical
for the Federal Government to increase appropriations to support
implementation of IDEA, with the ultimate goal of fully funding the
commitment made in 1975.
Recognizing that the number (and proportion) of all students who
now qualify as students with disabilities has risen steadily since
1975, the emphasis in Federal funding should be toward early (and
accurate) identification of students with disabilities and evidence-
based intervention, with the goal of reducing the lifetime morbidity of
these conditions and reducing their ultimate cost to the American
education system. In other words, appropriations should target
educational practices that have a high likelihood of reducing overall
costs through better investment in screening and early intervention.
These interventions will also increase the number of children who (for
a variety of factors) are at risk for developing a disability, but
because of better early intervention, do not go on to manifest the
disorder, and are able to be fully educated in general education
settings. This goal is especially true for children with specific
learning disabilities such as dyslexia, as the methods for early
screening and intervention, while well established in scientific
literature, are not routinely translated into practice at the level of
the local education agencies. This lack of translation leads to
billions in extra educational and societal costs.
Question 2. Additionally, what extra challenges do low-income
families face in trying to get the appropriate services for a child
that has a disability?
Answer 2. Low-income families face a variety of additional
challenges when attempting to secure appropriate services for a child
with a disability. I will outline several of the key challenges below.
Children from low-income families are more likely to live
in poverty, which carries an increased risk for reduced access to
healthcare, poorer nutrition, increased exposure to violence, and
chronic traumatic stress--all of which have a direct, negative impact
of brain development and ultimate learning potential.
Many health insurance providers (including most of those
contracted to provide medical insurance to low-income families)
specifically preclude coverage for diagnostic assessments for autism
spectrum disorders, specific learning disabilities, and intellectual
disabilities, citing that these conditions are ``the responsibility of
the educational system and not healthcare.'' This barrier effectively
prevents effective access to early diagnostic assessment for these
conditions, as schools do not routinely provide assessments until after
a child has already demonstrated educational failure. Children from
families with higher income are able to obtain these assessments
privately on a fee-for-service basis--an option not available to low-
income families.
An alarming trend is that parents of students with
disabilities who are not making progress now hire educational advocates
to work with the local school system to obtain appropriate
implementation of services. With few exceptions, this type of service
is available only to families who can afford to hire these advocates.
Low-income families are often not able to obtain such representation,
and are left to advocate for themselves.
Question 3. How can the Federal Government work to support low-
income families that have a child with a specific learning disability
like dyslexia and the public schools that serve these students?
Answer 3. The Federal Government has begun to take steps toward
supporting children with learning disabilities. For example, the Every
Student Succeeds Act (ESSA) authorized a first-of-its-kind
Comprehensive Literacy Center for parents and educators to better
support children who are at-risk for challenges with reading, writing
and language processing due to dyslexia or other disabilities. The goal
of the Center is identify, develop, and deliver information to
educators and parents to better meet the needs of students who may
struggle with reading, writing, language processing, comprehension or
executive functioning due to a learning disability like dyslexia. In
December 2015, Congress passed a budget allocating $1.5 million to the
Comprehensive Literacy Center, which is expected that the Center will
begin operating in 2017. While this is a start, it is unlikely to be
sufficient to support the needs of low-income families. The achievement
gap for students with disabilities is especially prominent in schools
with limited resources, where the majority of the students come from
low-income families and the need for services far surpasses available
resources.
In addition to the goal of fully funding IDEA, it is also
imperative that all certified/licensed teachers (including both general
education and special education teachers) have appropriate pre-service
training in evidence-based methods for identification and intervention
of learning disabilities. Management of this requirement at the State
and local level has proved insufficient. At present, most teachers
entering practice do not have the requisite expertise or experience to
provide evidence-based intervention to students with dyslexia. The
result is that identification and treatment are delayed (or absent),
and the biological ``window'' for optimal intervention begins to close
before care is received. This is the framework for the ``wait to fail''
model.
The lack of training is not the fault of the teachers. It is
typically not provided in pre-service/undergraduate training. Having a
well-defined, Federal requirement for all licensed or certified
teachers to have specific training and competence in identification and
intervention with children with learning disabilities (who make up
nearly half of all students with disabilities) is an initial step to
ensuring reducing the achievement gap.
Response to Additional Questions of Senator Sanders by Mark Mahone,
Ph.D., ABPP
Thank you for the opportunity to respond to these excellent
additional questions. The questions and my responses are below.
Question 1. When this committee considers the reauthorization of
the Higher Education Act, what can we do to ensure that educators in-
training--both those seeking to be general and special educators--get
the training they need to support students with specific learning
disabilities like dyslexia?
Answer 1. First, for pre-service teachers, one possibility is to
set and enforce national criteria for pre-service teacher training that
include required courses about developmental psychology, learner
variability, differentiated instruction, and evidence-based
interventions. There are established models for such national standards
in fields such as medicine, psychology, social work, speech/language
pathology, just to name a few. Pre-service teachers should also be
taught to be wise and active consumers of published research. At
present, this type of coursework is notably absent from the majority of
undergraduate and graduate pre-service training programs. For general
educators, many universities now require only one survey course
addressing instruction for children with special education needs. Given
that the majority of children with special education needs are taught
primarily by general education teachers, this training is woefully
inadequate.
Second, as noted above, national standards need to place
significantly greater emphasis in pre-service training on the area of
learner variability, emphasizing principles of Universal Design for
Learning (UDL). UDL is a framework to improve and optimize teaching and
learning for all people, and is built on the idea that instructional
flexibility is a ``standard,'' and that systems and all classrooms are
designed to accommodate all children and all learners. My home State of
Maryland has implemented into its State law that school districts will
use and emphasize principles of UDL in their curricular design. It is
time for this emphasis to be at a national level.
Third, pre-service training emphasizes content knowledge; but there
is insufficient emphasis on practical experience. As part of
considerations for national standards for pre-service education, it is
imperative that certified teachers entering the workforce have
sufficient pre-service internship experience with high quality mentor
teachers. To that end, teachers in training need quality experiential
activities early in pre-service education, not simply during the final
year before graduating. To accomplish this goal, there will also need
to be national standards for mentor teachers who supervise internship
experiences.
Question 2. Furthermore, now that the Elementary and Secondary
Education Act has been reauthorized, what can the U.S. Department of
Education do to ensure that educators have ongoing and high-quality
professional development that provides them with the tools to reach
every student, including students with specific learning disabilities?
Answer 2. For in-service teachers, it will be critical to fund
grants for instructional coaching, and encourage State Departments of
Education to use micro-credentialing in order to reward teachers for
seeking ongoing professional training. For example, a common practice
at the State level is to provide a certification (or credential) for
``Reading.'' At initial glance, providing such a credential for those
who teach reading seems like an excellent idea. Closer analysis reveals
that such credentials are highly general, and may apply to the entire
range of grades (pre-K-12). In other words, a teacher with a
``Reading'' credential may have expertise in teaching middle school
students to read better, but may not have training or experience in
teaching primary grade students how to read initially. Individuals with
the ``Reading'' credential may also have little training or experience
in teaching dyslexic students. Conversely, the micro-credential allows
for specific standards and credentialing in specific areas, such as
teaching students with dyslexia, or early literacy instruction. With
these micro-credentials, States and districts can better match teacher
expertise to needs of students. The process also allows for highly
targeted continuing education among experienced educators. This model,
like that set forth for national teacher certification, is also used in
fields such as medicine, psychology, and speech/language pathology--all
of which has established criteria for specialties and subspecialties.
Finally, continued and expanded funding should also be dedicated to
improve the ``What Works Clearinghouse'' to be more accessible and user
friendly for the front-line teacher. Created in 2002 by the U.S.
Department of Education's Institute of Education Sciences, the What
Works Clearinghouse provides educators, researchers, policymakers, and
the public with a central source of scientific evidence on what works
in education to improve student outcomes. Its goal is to help
decisionmakers contend with differing messages from research studies
and product offerings.
Response to Questions of Senator Sanders by April Hanrath
Question 1. Today, our schools are being asked to do more with
less. This is unfair for students, families and educators, especially
in an environment of increased economic inequality where over half of
all public school students come from low-income families.
States, local districts, and the Federal Government have a
responsibility to ensure that our schools have the resources they need
to provide every child an excellent education. Currently, over 30
States are spending less per a student than they did before the
recession. Further, we have yet to make up even 15 percent of the over
350,000 jobs cut by school districts due to the Great Recession. Making
matters more challenging is the fact that schools are serving over
800,000 more students than they did in the year 2008.
We know that students with disabilities often need extra support.
Congress passed the Individuals with Disabilities Education Act (IDEA)
to ensure that students with disabilities had a civil right to
education and that schools had the resources needed to meet the
``excess costs'' of providing special education services. Today, the
Federal Government is far short of its obligation to fully fund IDEA,
contributing less than half of the promised 40 percent contribution
necessary to cover the ``excess cost'' of educating students with
disabilities.
Ms. Hanrath, can you speak to the need of fully funding IDEA and
how that would help schools better serve children with specific
learning disabilities like dyslexia? Additionally, what extra
challenges do low-income families face in trying to get the appropriate
services for a child that has a disability? How can the Federal
Government work to support low-income families that have a child with a
specific learning disability like dyslexia and the public schools that
serve these students?
Ms. Hanrath, can you speak to the need of fully funding IDEA and
how that would help schools better serve children with specific
learning disabilities like dyslexia?
Answer 1. I am very proud of my daughter, Jocelyn, who just
graduated high school with a 3.7 GPA and will begin studying sports
management at Highline College in the fall. Jocelyn has learning
disabilities and struggled throughout elementary school with reading,
writing, test anxiety, executive functioning, and attention issues.
Throughout elementary school, Jocelyn had several first-year teachers
who thought she was simply unintelligent or a behavior problem. I knew
that wasn't true. At the end of fourth grade, I had Jocelyn evaluated
by a neuropsychologist and her school finally recognized that she had
dyslexia and dysgraphia and provided her the rights and services she is
entitled to under IDEA.
Starting in fifth grade and continuing throughout school, Jocelyn
received extra time, oral testing, and the right to use a computer to
type assignments. With the help of these accommodations and an amazing
special education teacher who tutored and advocated for my daughter,
Jocelyn was able to learn in general education classes with her
friends. She even enrolled in AP and honors classes in high school. My
family is not alone. There are 2.4 million students who, like Jocelyn,
have specific learning disabilities and the majority of these students
want to go to college.
The President's fiscal year 2017 request of $11,912.85 million for
IDEA grants to States would freeze funding at the fiscal year 2016
level, which is only 16 percent of the total per child cost. IDEA is
critical to ensuring that all students are able to achieve their goals.
Special education services are a civil right accessed by 6.7 million
students with disabilities, and the number of students who need
services does not decrease when Federal funding does. In order to
ensure students and schools have the necessary resources, we need to
fully fund IDEA State grants at the 40 percent level that Congress
promised in 1975, and substantially invest in all IDEA programs.
Question 2. Additionally, what extra challenges do low-income
families face in trying to get the appropriate services for a child
that has a disability?
Answer 2. When Jocelyn was in fourth grade, the school tested her
for special education the same week that her grandmother died, and
reached the false conclusion that Jocelyn would never succeed in school
because she just wasn't smart. I knew that my daughter struggled in
school, but was very bright so I found a neuropsychologist and paid to
have the testing re-done. The neuropsychologist diagnosed Jocelyn with
dyslexia and other learning disabilities. I am a single mother and a
small business owner and was fortunate enough to have the money to pay
for Jocelyn's testing, but I was not wealthy enough to pay for daily
tutors so I had to rely on the public school system, but mostly on
myself.
Families living in poverty may not have the money to seek private
help, or the time to educate themselves on learning disabilities and
advocate for their child. This is especially disconcerting considering
the prevalence rate for learning disabilities is higher for children
living in poverty. Overall, students with learning disabilities are
more likely to be boys, living in poverty, in foster care, homeless,
African American, or Latino. Although learning disabilities do not
correlate with intelligence, one-third of students with learning
disabilities have been held back in a grade at least once, and students
with disabilities--particularly African American and Latino boys--
experience higher rates of school disciplinary actions, higher dropout
rates, and lower graduation rates. For adults, the prevalence rate for
learning disabilities is almost twice as high for individuals living in
poverty compared to individuals above the poverty line, and only 46
percent of working age adults with learning disabilities are in the
labor force. Yet, students with learning disabilities are enrolling in
postsecondary education at the same rate as the general education
population and express similar goals for college, employment, and life.
I was lucky that my daughter is a talented student-athlete so her
college made it easy for her to get disability services using her high
school IEP, and she earned a scholarship from the National Center for
Learning Disabilities. This is not the case for most students with
learning disabilities. Often, colleges make students pay for a new
evaluation in order to receive services. Because these tests are so
expensive, many students are just not able to get the supports they
need in college. Even if the college recognizes that a student has a
disability, the family may still have to pay extra, on top of regular
tuition, to actually access services.
Question 3. How can the Federal Government work to support low-
income families that have a child with a specific learning disability
like dyslexia and the public schools that serve these students?
Answer 3. The biggest challenge that Jocelyn and I faced was the
misconception that students with learning disabilities cannot learn.
We're not alone. Seven out of 10 parents, educators, and members of the
general public incorrectly associate learning disabilities with
intellectual disabilities and autism, and half think that learning
disabilities are the result of laziness. The vast majority of students
like my daughter spend 80 percent or more of their school day learning
alongside their peers who do not have learning disabilities. Research
shows that children who spend more time in general education classrooms
have improved outcomes. The practice of inclusion also reflects a core
requirement of IDEA.
This means that it is critical for general education teachers to be
trained on learning disabilities so that they can identify students as
early as possible, hold them to high expectations, and address their
unique learning needs. My daughter is proof that when you hold students
with dyslexia, and other specific learning disabilities, to high
standards and support them with the tools they need to succeed, they
are able to fulfill their goals and dreams. To this end, the Federal
Government can support low-income families that have a child with a
specific learning disability by ensuring that schools are held
accountable for all students' academic outcomes.
The Federal Government can support public schools by investing in
IDEA, the National Center for Special Education Research (NCSER), and
in programs designed to support all students, including high quality
early learning programs, teacher quality grants, the Comprehensive
Literacy Development grants, and evidence-based initiatives. As the
Federal Government works to reauthorize the Higher Education
Opportunity Act, streamlining and simplifying the documentation
requirements for obtaining disability services will ensure that every
student, regardless of her parents' income, is able to receive the
supports they need to thrive in college.
Response to Questions of Senator Casey by Guinevere Eden, D.Phil.
Question 1. Dr. Eden, I know the majority of your research focuses
on K-12 age children, but in your experience, how does support for
students with dyslexia and other learning disabilities change when
those students attend college?
Answer 1. While younger children with dyslexia struggle primarily
with difficulties in decoding, high school and college-age students
with dyslexia often struggle with reading fluency and reading
comprehension, and also have difficulties retaining what they have
read. Often they also struggle with spelling accuracy, slower
handwriting fluency, limited writing vocabulary, or lower working
memory capacity, which in turn can lead to difficulties with writing.
This means that although these students may have the same ideas as
their non-dyslexic peers, college students with dyslexia are at a
disadvantage when it comes to writing academic essays. The amount of
reading and writing is significantly greater than what students
experienced in high school, further compounding the difficulties in
making the transition from high school to college. For those students
who also have Attention Deficit Hyperactivity Disorder (ADHD), the
challenge of sustaining concentration and sticking with a storyline may
be especially difficult.
While dyslexia persists into adulthood, the support for students
with dyslexia and other learning disabilities changes when those
students attend college. The Individuals with Disabilities Education
Act (IDEA), which applies to K-12, no longer applies in college, and as
such, special accommodations, individual instruction, and alternative
testing are no longer in place. There are no Individual Education Plans
(IEPs). Instead, the Americans with Disabilities Act Amendments Act
(ADAAA) applies, and while this can provide a student with
accommodations, the student will no longer have access to the range of
services that was available while in grades K-12. Importantly, the
college student with learning disability has to make a concerted effort
to obtain these accommodations, which requires identifying the
appropriate office at the college, submitting the necessary materials
(usually a professional evaluation), and from then onwards activating
and re-activating the support services and/or accommodations available
to them throughout their studies. The degree to which a student seeks
the help to which they are entitled will vary greatly and depend on
their own advocacy skills. The transition to the college comes with
significant change, including a reduction/absence of prior support
mechanisms (parents and teachers who previously advocated on their
behalf) combined with a new perspective on a personal identity formed
within this new environment, which may cause the student to disregard
their learning disability. Critically, the student has to secure the
services because the college does not have a mechanism by which to
identify students with learning disabilities. The number of college
students with learning disabilities has been increasing, and it is
therefore important that these students are given the tools that allow
them to select the college that suits them best and to advocate for
their academic and other needs throughout their studies.
The advice that students with dyslexia and other learning
disabilities receive at college will vary depending on the institution.
Some may provide input to help students identify courses that are more
compatible with their reading and writing challenges or to substitute
required courses. There are some colleges that specialize in teaching
students with dyslexia, such as Landmark College in Vermont. The choice
of the college and the efforts made by the student to attain the
necessary accommodations and support once they attend that college will
play a critical role in their ultimate success. Taken together, the
support for students with dyslexia and other learning disabilities
changes a great deal when those students attend college, and the
experiences will vary widely depending on the student and the college.
sources
Connelly, V., Campbell, S., MacLean, M., & Barnes, J. (2006)
Contribution of lower order skills to the written composition of
college students with and without dyslexia. Developmental
Neuropsychology, 29:1, 175-196. Available at http://dx.doi
.org/10.1207/s15326942dn2901_9.
Sterling, C.M., Farmer, M., Riddick, B., Morgan, S., & Matthews, C.
(1997). Adult dyslexic writing. Dyslexia, 4, 1-15.
York, J. Advice for the College Student. Resource Office on
Disabilities, Yale University. Available at http://
dyslexia.yale.edu/Stu_college.html.
Question 2. As we think about how best to support students during
the implementation of the Every Student Succeeds Act do students who
have dyslexia also struggle with other skills (in addition to reading)
as well? What does brain research show about the relationship between
dyslexia and other learning disabilities?
Answer 2. Students who have dyslexia often also struggle with other
skills. For example, dyslexia (also referred to as reading disability)
often co-occurs with dyscalculia (also referred to as math disability).
This co-occurrence (referred to as ``co-morbidity'') is significantly
higher than what would be expected by chance, leading researchers to
study the cause of their connection. It has been shown that
difficulties in both reading and math may arise from a common weakness
in working memory, processing speed, and verbal comprehension. Studies
have also shown that the same phonological processing skills that are
needed to succeed in reading are also needed to succeed in math. That
is, these skills are important for successful reading and math.
Further, the severity of difficulties in these areas and their
combination will likely influence the manifestations of a child's
reading and math impairments. As such, researchers are viewing reading
disability and math disability not so much as discrete groups, but
rather as multi-dimensional, viewing performance on these skills along
a number of continua. From an educational and policy perspective, this
means that a child may appear to be impaired on reading using a cut
point on a given standardized test of reading, yet the same child may
also have difficulty in math, but this weakness may not have been
tested sufficiently, or the child may fall just short of the threshold
used to determine the disability. Implementation of the Every Student
Succeeds Act should therefore take into account that when difficulties
are identified in reading, the chances are high that there are
weaknesses in math even though these may lie below the surface.
Interventions need to be identified in consideration of all of these
difficulties.
Results from brain imaging research are consistent with this
approach, showing that children diagnosed with dyslexia have less brain
activity in left hemisphere brain regions associated with reading, and
children with dyscalculia have less brain activity in right hemisphere
brain regions associated with math. However, children with dyslexia
also underactivate the left hemisphere for some arithmetic procedures,
even though they do not meet a diagnosis of dyscalculia. This means
that while they did not exhibit obvious difficulties in math on
behavioral evaluation, especially in the context of their severe
reading problems, they nevertheless show signs of aberrant brain
function during some math tasks. Neuroscientists are also investigating
brain regions that have a more general role, such as supporting working
memory, that are critical to both math and reading, and that may be
contributing to the difficulties more generally, rather than the brain
regions associated specifically with just reading or math. The outcome
of this work is likely to aid in determining avenues for intervention
for children with these learning disabilities.
sources
Ashkenazi, S., Black, J.M., Abrams, D.A., Hoeft, F., & Menon, V.
(2013). Neurobiological underpinnings of math and reading learning
disabilities. Journal of Learning Disabilities, 46(6), 549-569.
Available at http://doi.org/10.1177/0022219413483174.
Branum-Martin, L., Fletcher, J.M., & Stuebing, K.K. (2013).
Classification and identification of reading and math disabilities:
the special case of comorbidity. Journal of Learning Disabilities,
46(6), 490-499. Available at http://doi.org/10.1177/
0022219412468767.
Evans, T.M., Flowers, D.L., Napoliello, E.M., Olulade, O.A., & Eden,
G.F. (2014). The functional anatomy of single-digit arithmetic in
children with developmental dyslexia. Neuroimage, 101, 644-652.
Available at http://doi.org/10.1016/j.neuro
image.2014.07.028.
Willcutt, E.G., Petrill, S.A., Wu, S., Boada, R., Defries, J.C., Olson,
R.K., & Pennington, B.F. (2013). Comorbidity between reading
disability and math disability: concurrent psychopathology,
functional impairment, and neuropsychological functioning. Journal
of Learning Disabilities, 46(6), 500-516. Available at http://
doi.org/10.1177/0022219413477476.
[Whereupon, at 11:55 a.m., the hearing was adjourned.]
[all]