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tv   Advocates and Medical Experts to Testify about Dyslexia  CSPAN  May 11, 2016 1:53am-3:49am EDT

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and foreign affairs committees. congressman meeks sits on both committees and discuss the upcoming election. and the latest edition of mit technology review explores new genetic technology that could eliminate the mosquito species and eradicate miliaria in a year. we'll be joined by the bio medicine senior editor. be sure to washington the washington journal live at 7:00 a.m. eastern time. join the discussion. medical researchers and the mother of a dyslexic high school student testified about dyslexia. they spoke about their experiences and need for more research and educational resources. this senate health education labor and pensions committee hearing is an hour and 50 minutes. the senate committee on health, education, labor and
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pensions will please come to order. welcome to all. thank you for being here. and let me just remark. senate bennet died and his burial is this morning. so we've lost some of our folks here, including senator hatch who asked that i would note that he's going to be in utah attending former senator bennet's funeral and wished he could be here and regrets that he cannot. under the circumstances, we understand. this morning we're having a hearing titled understanding dyslexia, the intersection of research and education that hopefully will raise awareness and educate us on dyslexia, highlighting the importance of ear early identification and ensuring that students have access to evidence-based resources. we'll each make an opening statement and introduce our panel of witnesses. you have five minutes to summarize your testimony. we have a light in front of you.
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green light is go. yellow means you have one limit left and red means i'm going to start pounding on my hammer. after our witnesses' testimony senators will have each five minutes to ask questions. i am pleased to chair this. and again thanks senator mikulski for co-chairing and my other colleagues in support of having this hearing and we're discussing dyslexia, an issue important to me as the parent of a dyslexic and a senator. we have a great lineup of witnesses, including those who have personally addressed dyslexia, amir baraka who are is a friend will speak about growing up without resources and overcoming and eventually becoming an actor. david boies who overcame dyslexia entering the most language-based of all professions, law. and miss han raj will speak of her daughter who has been successful but from the momma perspective. so thank you, momma. there is a common thread in each
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family's testimony. a child who struggles to read and cannot. often the child is -- often the parent was dyslexic, too, and they relate but the child frustrated by the inability to read, if a boy acts out, if it is a girl she is shy and embarrassed to read aloud in class for afraid of being mocked. and think about the teacher, who has the bright child, struggling to read, but doesn't have the training or resources to help that child become the better student and achieve their fuller potential. and in october of last year senator mikulski sponsored and the senate passed a resolution that defined dyslexia as a quote, unexpected difficulty in reading, highlighted by a gap between the individual's intelligence and their reading level. it is the bright child who doesn't read commensurate with their brightness. put simply, a nondyslexia iq reading track along the same line and their iq is higher and
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dyslexia reading lower. an it is a learning disability but according to sponsored research, nearly 20% of us have dyslexia. whether you are watching on tv in this room or in congress and in your workplace, it is through all walks of life. and the impact of this dyslexia on an individual and a family, a school and our society is tremendous. but what if i told you by effectively addressing dyslexia, we could further prison reform by identifying students with dyslexia and providing science-based intervention. or, that we could get more bang from our federal investments in education. or 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. now the goals of this hearing are simple. to raise awareness of the scope and scale of dyslexia, to increase awareness of what
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precisely dyslexia is, as defined by science. and to highlight the importance of early identification of those who are dyslexic and giving the children the necessary evidenced-based resources needed to succeed in school and beyond. now, 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 could not afford to have their child's needs met. perhaps that's the one thing that should be taken from this hearing. there is a correlation between your ability to have your child's needs accommodated and your wealth. and that is not good. we've heard testimonies from -- we've heard testimony from governor superintendents and other school administrators that screening for dyslexia is not happening. so your child may be dyslexic and it may not be discovered. and this, despite the fact that
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we hear from the doctor, that the achievement gap between a dyslexic and a typical reader is evident as early as first grade and the gap continues into adolescence. now, there are three public charter schools in the nation that specialize in teaching dyslexics. two 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 public school as the reading difficulty is addressed. and there are colleges that accommodate for students with dyslexia. nickel state university has the louisiana center for dyslexia and related learning disorders. i think senator alexander has a school in his state. now, i've mentioned though, as well, about how addressing dyslexia could greatly impact the rates of incarceration. we know that many who are incarcerated are functionally illiterate. a study of the texas state
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prison in huntsville found that 80% of prison inmates functionally are illiterate, and 40% dyslexic. now if the prevalence is 20% in the general population, 48% in the incarcerated population. if appropriate science-based strategies to teach and treat dyslexia are instituted, the skt an our -- the effect on our future prison population could be profound. last year, let me say, with all of this, there has been progress. last year senator mikulski responsored a soebts resolution that passed that calls on congress and schools and local agencies to recognize a significance implications of dyslexia that must be addressed. it also designated october 2015 as the national dyslexia awareness month. we will reintroduce this, this year. representative lamb mar smith research excellence and advancement in dyslexia act or
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the read act ensures that the national science foundation is dedicated funding for dyslexia research, this past congress and was signed into law. and the average student succeeds creating a dyslexia focus comprehensive center providing evidence based resources for identifying students struggling with reading and the appropriate interventions to states, school districts, teachers and parents. lastly, the u.s. department of education's office of special education and rehabilitation services issued a dear colleague letter that clarifies that nothing in federal law prohibits the word of dyslexia in evaluation, eligibility determinations and an individualized education program or iep for students. and eck dotally, 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
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first in many steps in the right progression. we've made great progress. we've seen conditions like autism and dyslexia could be diagnosed and they are science-based intervention. we must tib continue that all disabilities have the same science-based intervention. if there is a call to action, is 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. >> thank you, koernt cassidy. i'm delighted toco chair this hearing with you on the very important issue of dyslexia. it is important to you and i. it is important to congress and sure important to the nation. i would like to thank senators alexander, the chair and the ranking member senator murray for allowing us to hold this hearing today and to focus on dyslexia and really the
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understanding of it and the intersection of scientific research and education. this is a very interesting hearing in many different levels. first of all, we're co-chairing. that in of itself is very different. and the fact that we see each other as really not a democrat or a republican, we see each other as advocates for children and children who need special attention and then what type of special education do they need. the second thing is that within the realm of congress and the prickly atmosphere we sometimes find 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 from our votes, even different political philosophies. but again, in this room, in this committee, we are focusing on the needs of children and that doesn't know politics.
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it doesn't know the lines that separate us or divide us. so senator cassidy is the physician, i'm a social worker. so 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 harassing and har ang hearing, this is an informational dialogue and i look forward to doing this. i regard each and every one of you as experts as the table. come from very esteemed academic centers of excellence. yale, georgetown, hopkins, kennedy, craiger, but there are other great senators -- senters of learning and they are called the streets and neighborhoods where kids grow up because as they face challenges, their education comes from the street. but the first teacher in the
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learning center is in the home and that is why it is 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. so 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 work so hard on the elementary, 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 quality teacher in the classroom. well, we need highly qualified teachers in the classroom. there is no doubt about it. but when a child walks into that classroom, the child brings a lot. they bring a lot from the home. they -- their family history. their social situation. and so on. so we expect a lot of our teacher, but the teachers should begin to expect some things of
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the larger community. i support the schools with children who are trying to do the famous individual education plans. i for get oget how all of the as come together. but the fact is this, you could have the best plan but unless you can operationalize that plan, what does it mean. and it is in because of the very nature of the unfunded mandate where we only pay 10% of special education funding. and then we argue over title two and how we can even provide additional teaching -- training for our teachers. there is school systems that are hard-pressed to have that individual education plan and to be able to operationalize it. but 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 isn't
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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 if there is one area that we could agree upon, it is that we should fund that and meet our obligation so that states and -- states and then local school systems could do what we told them to do. and i urge my colleagues to think about that as part of an action plan. but today is about dyslexia. a life-long condition that affects the way the brain processes written and spoken language. it is considered the most important learning disability. i know that senator cassidy is going into a lot of the information and a lot of the data that i won't -- i won't again say -- 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
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of awareness and understanding, among educators and even health care professionals. a lack of teacher training, when they are 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. so today, i really want to listen to the experts. those that are officially designated learning centers, but those that have been in the streets and neighborhoods and live the life of being challenged by dyslexia. those who have been a mother, trying to be on the phone, trying to be on 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. so i want to thank you for your insistent leadership and look forward to hearing this testimony. >> i'll now defer to senator murphy to introduce dr. shauwitz. >> thank you very much.
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i'm eager to get to testimony. i'm going to have to step out and come back but i'm excited to introduce the expert of experts at the end of the table which is dr. shelly shauwitz from yale industry where she is the professor in learning development at the yale school of medicine. she has a long list of tiles including the codirector of the yale center for dyslexia and creativity and one of the leading researchers in this field and is a physician her research focus has been on neurobiology and epidemiology providing a scientific basis for understanding dyslexia and she's written more than 200 journal articles chapters and books on this topic. i know that she is a great source of council for both the chair of this hearing and myself and glad to have dr. shauwitz with us. >> i'm introduce ameer baraka from new orleans. the struggle from his life. didn't learn he was dyslexic and
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incarcerated. he earned his ged. and he strugged. and i am eager to hear how he used his stardom to steer children off the path to incarceration. and i'll defer to you, dr. -- senator mikulski for dr. eden and mahone. >> i would like to -- i would like to introduce dr. guinvere eden. he is an expert in dyslexia research. and one of the very first to use brain imaging and mris to understand the neurological basis for dyslexia. she's been supported by nih and nsf and currently directed the center for the study of learning at georgetown and continuing to investigate while she is actively involved in teaching graduate students and really investigating all of the sensory processing related to reading and how these may be different in individuals.
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she's going to bring a lot to us. we also have doctor mark mahone who is a baltimore guy through and through. grew up in a neighborhood called dunn dock, which was just 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 doctor mahone does is he provides 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
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codirector for center of intervention 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. and i'm very proud to bring he and dr. eden to the committee's attention. >> next to introduce dr. david boies is the chairman of boies chiller and flexner, selected as one the 100 most influential people in the world by time magazine in 2010. named global international litigator of the lead by who's who legal and unprecedented seven times and received prestigious awards and numerous honnarary degrees. he is a former hill staffer served as chief council for the senate anti-trust sub-committee and the senate judiciary committee. and earp han raj, a single mom of two adopted children from
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salt lake city. ms. hanroth is recognized for work on behalf of her daughter jocelyn who are is behind her, who has dyslexia and other learning disabilities. she's a patient advocate with understood at and attended the university of utah before taking over the family business. thank you all. i will now ask dr. shauwitz to begin her testimony and the rest to follow in order. >> good morning. [ inaudible ]. >> dr. shauwitz, i'm not sure your microphone is on, doctor. there you go. we want you to be able to belt it out. >> thank you. 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 made in dyslexia and its important implications for
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education. the problem, our nation is in the midst of a national nightmare. with substantial numbers of children are not learning to read, especially boys and girls from disadvantaged families. just released, 2015 data from nape. i'm going to just -- if you could stop the thing. i'm going to be showing a number of slides. and i think it would be helpful if people could see it. i don't know -- >> we're looking at it right here. we see it on the tv. >>o great. >> are you going to give us the end of 2015 high school rating scores and nab. we got it. >> great. okay. so just released, 2015 data from nape, the nation's report card, sends a loud warning signal. here outlined in yellow, the lowest achievers show large declined in reading and most alarming the greatest drop in reading in two decades occurs, between 2013 and 2015. reactions from experts were
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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 of the pieces together. dyslexia represents 80% to 90% of all learning disabilities and differs marketedly from all others in that dyslexia is specific and scientifically valid. it is common, one out of five. initial descriptions as an unexpected difficulty in reading are today empirically validated. a major step forward is cassidy mikulski resolution 2075 providing a 21st century definition of dyslexia and incorporating scientific advances in dyslexia and emphasizes the cognitive basis of dyslexia.
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getting -- difficultying getting to the individual sounds of spoken language. it is not seeing words backwards. resolution 275 represents a landmark in a line in science and education. dyslexia is a paradox. the same slow reader is often a very fast and able thinker. giving rise to our concept you'll model of dyslexia. as a weakness in getting to the sounds of words surrounded by a sea of strength and higher level thinking process. converging evidence has identified a neurosignature for dyslexia. that is an inefficient functioning of the post earum hemisphere reading systems. our ongoing studies examine disruptions in brain connectivity in dyslexia. the role of attentional intentional reading and the economic consequences of dyslexia. dyslexia is real. however, imaging cannot be used to diagnose individuals. the achievement gap between
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typical and dyslexia readers is large. it 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 doomed to higher unemployment and lower earnings and as you heard from senator cassidy a few minutes ago, almost 50% of prison inmates are dyslexic. so in aligning education with science, certain principals emerge. one, given its high prove lins in scientific validity and harsh impact, it must be given providence and reauthorization by dea. schools must screen for and identify dyslexia students early. the students should know his diagnosis and that he is smart. moving forward, implementation requires a model incorporating
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21st century scientific knowledge about dyslexia as shown in this slide. school climate, where everyone is on board and the word dyslexia is used, small classes and different methods, et cetera. where can this model be found in independent schools for dyslexia students. for example, the win ward school in new york. however the tuition is $52,000. out of reach of middle class and disadvantaged children. and public charter schools an new models serving dyslexic students and example is louisiana key academy, oka in baton rouge. schools like lka bring a quality and hope to all dyslexic children. so that disadvantaged children are no longer left behind. and i always think of people who are dyslexic, it reminds me of an iceberg where you see 10% and we see the people who have
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succeeded, including my hero, david boies, seated at this table. but we forget about the 90% that are unseen that are asking for help and could benefit from help. thank you. >> thank you dr. shauwitz. mr. baraka. >> good morning, senators. i want to thank you for taking your valuable time to listen to my message. we're coming up an important presidential election and i know your time is important. i'm also not oblivious of the challenges we face as a country. one such challenge is the life long curse of dyslexia. one out of five 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. so many people have lost the will to believe because of the enemy of 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 by robbing me of my god-given
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potential. can you imagine in my early teens never wanted to being anything bia drug dealer. neither my mother nor schoolteachers were able to diagnose 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, a lawyer was out of my reach because i could not read. i turned to quicker path ways out of new orleans projects. i saw many in my community making ways 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 such as dumb and stupid. using names such as these can cause any child to feel hopeless and lost. you will notice i never mention any father in this presentation.
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because that is he left when he was 3 years old because he left us for his dream to find heroin use. i chose to succumb to my environment while brothers and sisters excelled in school. i thought i was a dummy like my mom said. i became a street thug and i felt cheated out of an education. i went to school just because hi to as a kid. many fridays i would mallinger because i couldn't pass the spelling test or sleep in project hallways until school was out to avoid the embarrass: i pushed myself into a hole and 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. but what became the final thing that caused me to pledge my allegiance to the lives of the streets was a girl. i was in sixth grade and a girl i liked was in class. it was our first week of school. we were in english class and the
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teacher called upon me to read out loud. my palms began to sweat and it felt like drops of of blood on my forehead. i couldn't pronounce any of the words and the teacher made me continue, knowing that i couldn't read. some students laughed and others looked in amazing. from that day forward, i knew is that school wasn't a place for me and the young lady never 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 street told me that is how you resolve conflict. after my release from prison at 15 years of age for manslaughter, i got back into the drugs, still never learning to read, i ended up doing prison time as an adult. i rab ran -- ran from the law for four years as a fugitive because i was facing 60 years for drug distribution and i was guilty. i did four years by god's grace. a jury found me guilty of a lesser charge. at age 23 i entered a
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correctional facility reading on a third grade level. i didn't feel bad because many of the men there were just like me. we all read poorly. but after reading the biography of malcolm x, i realized he dropped out in seventh grade and made something of himself. >> felt that i could accomplish something too. i worked hard writing down each word i couldn't pronounce. i kept memorizing words and writing letters and reading short books. a ged teacher noticed that i was struggling and had me tested. and he asked if my siblings could read. i told them they went to college. and he tested me and said i could be corrected if i was willing to work hard. i would write words down wrong so i sat in front of the class to double check. i worked for four years trying to attain my ged. my reading ability surged and i was ready to take the test. i passed and started helping others in math and vocabulary building. since my release from prison i want on to model for clothing lines like nike and worked
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with -- i've went to acting class and worked with academy award winner jessica lane, kathy bat bates, [ inaudible ] and many others. i produced four independent film and wrote the first book, the life i chose, the street life to me. it is meant to inspire others just like i was hiding in the shadows an not getting help. it is also for those who believe that dealing drugs is not the way. today there are schools assailable -- available for kids to fight dyslexia. schools such like the cassidys have. thank you for your time and consideration. >> thank you. dr. eden. >> thank you, senator mikulski and senator cassidy for inviting me to speak to you today. the research i'll be described has used brain imaging technology to study the brain structure and function. this research has resulted in tremendous advances of our understanding of the human brain and how it perceives information
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and liberiearns and performs sk such as reading. reading, a cultural invention, allows us to represent speech and symbolic form involved a coordination of the language areas with visual and auditory systems. at georgetown university with the support, we have studied brain activity with functional mri while participants process words. that allows us to [ inaudible ] in children and also to understand the brain bases of reading and different writing systems an in different languages. researchers have learned that acquiring leading changes the brain structure and function. it is thought that learning to read involves coopting involved in language and visual object recognition and these become recycled into a reading network. in other words children's brain change as they learn to read. brain images has heightened our understanding of dyslexia. the feemd has grown -- the field has grown rapidly and made significant contributions. it helped people understand that the brains of children and
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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 the reading difficulties. there should not be a stigma. researchers have studding the impact of reading interveks. we learned that children and adults with dyslexia made gains in reading but showed mez aurable brain plasticity. some of the same brain areas used for reading are lessen gauged when children with dyslexia solve math tasks and the connection to other forms of reading disabilities of learning disabilities. sometimes we make novel discoveries with brain imaging for which there are no obvious indicators. for example, we found that the brains of females with dyslexia do not conform to the neurobiological model of dyslexia that was largely derived if studies in males. this might have important implications for diagnosing and treating females with dyslexia. dyslexia runs in families and
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genetic research has utilized brain imaging to examine the brains with those that carry the genes. taken together, researchers have made significant advances in characterizing the brain base of dyslexia but the exact mechanism of dyslexia, how it comes about is not 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 inheritable with roughly a 40% chance of your child having dyslexia if you have it, it is greatly underutilized when it comes to early identification. this is a warning sign and there should be a place to note it on the questionnaire of -- entering kindergartener. this together with a child's performance on behavioral later predict out come such as [ inaudible ] and letter naming could be used to signal that a particular child is at risk for difficulty in learning to read. on the other hand, imaging is not used to identify the child who v has dyslexia. brain imaging is used in research studies involving groups of participants.
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however parents often asked for brain scan in their child because they see the difficulties in their child with reading. and they worried that the school is not recognizing the problem and they hope that a brain scan will provide some information. i understand such parents request for identification because my own daughter had trouble reading and exhibited anxiety and avoidance of reading which she described as a stupid activity while the school was not concerned, i am and we concluded with [ inaudible ] awareness. and her improvement measured by standardized test now manifest in her reading for pleasure. for parents of struggling readers, it is 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 to make sense of the scientific research and how it applies to their child. for the into thely, there are resources to support families of children with learning ieshz. such as the website
2:29 am here the information is provided online, accessible to educators and parents and tied to the 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. br mr. boies. >> thank you senators cassidy, mikulski, members of the economy. i'm a 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. but 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
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with the ability of a child to realize their full potential to become a functioning, productive member of society. what is 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 are tutoring, there are training that could help people improve their reading. in addition, if they understand that they have dyslexia, and they understand there is this problem of 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.
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but 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. and the third thing that early identification can do is it can help children understand that they are not dumb. that they are not stupid. that they can achieve -- and 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 life. there comes a time when nobody cares how fast you read. nobody comes to me as a lawyer and wanted to know how fast do i read? they want to know, can i analyze the law, can i present a case and cross-examine a witness and can i exercise judgment? can i help them solve legal problems? how well do i think. what is my integrity, what is my
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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. and what children with dyslexia and parents who have children with dyslexia need to understand is that this can be a temporary problem. it is not easy. there is an enormous amount of work that has to be done. no matter how much help we give children, they have to really work harder than their peers. but that training and working hard can serve them very well later in life. my son christopher was tutored four days a week, every week for ten years. he had to learn to manage his time and he to learn to adapt to
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that additional burden. but 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 -- that don't have dyslexia -- it tests them pretty well. it doesn't test people with dyslexia at all. because what it is doing, is it is 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. but if you've got a difficulty in reading, those standardized tests don't test your potential at all. and we're testing -- we know
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we're testing the wrong things. we know that when we test reading sh when we test -- when we test how much vocabulary you have, we know those aren't really life skills. but we use those as a proxy but they are not a bad proxy for people with dyslexia. but for people with dyslexia, they are a terrible proxy. and so what we have to do, is we have to educate the educators an we have to have the patience and give people the help they need to achieve their potential and that can be done. thank you. >> good morning senator cassidy yrks senator mikulski, fellow senators of the panel, thank you for the opportunity to speak with you this morning. dyslexia is currently the most prevalent educational handicapping condition in the u.s. it is twice as common as adhd, ten to 15 times as prevalent at autism. it affected an estimated one in
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five individuals nationwide. 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 and writing and language methods. the problem is that many students are not getting access to the structured literacy instruction. as a result, there is an alarming achievement gap. as was mentioned earlier, the nape data, i have results from 1998 through 2014. -- 13. fourth grade data showed that 9% of students with disabilities scored proficient in reading compared to 26% of nondisabled peers. both of the statistics are unacceptably low. but is it -- but is the prevalence of dyslexia so high it could explain the high rates of school failure? i assert that it is no. but there are other reasons.
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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 and mentoring and from professional development. getting the training that way is expensive and inefficient and burdensome to the schools and to the teachers themselves. it also places the responsibility for training teachers on the school systems rather than the institution of higher education. secondly, a complicated factor in working with the students with dyslexia is that pure dyslexia is often the exception rather than the rule. students with dyslexia often
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have associated behavioral motivational and social emotional problems and other conditions that interfere with the implementation of otherwise routine and 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 and leadership positions often don't have the training and 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 wan to highlight some of those. despite the best efforts of our scientific community, there is still heterojenality in terminology in treatment and
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epidemiology. we know that dyslexia is a neuroly developmental base disorder and occurs along a continuum rather than a discrete 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 before it becomes dyslexia, with differences ranging from the fifth percent i'll up to the 20th percentile. and the behavior and the learning and the neurobiological coro witz and dyslexia all look different depending on how it is defined. as we move forward of ssa, it is critical for the scientific and educational communities to work toward a common language for identification and studying dyslexia. with efforts toward a more specific terminology. this consistency extends to implementation of response to
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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. but as scientistics -- 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
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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. >> good morning, senator cassidy, mikulski, and members of the community and fellow witnesses and attendees. >> will you pull your microphone toward you. >> certainly. thank you for giving an opportunity to share my family story of living with dyslexia. my name is april hanroth and i'm the proud mother of jocelyn who is a senior in high school in our home town of salt lake city. i'm a parent with understood, a free online resource with learning and attention issues. i'm honored to share our journey with dyslexia as we've nave gated through the educational system in utah. but i also recognize that we are not alone in this journey.
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over 2 million children have learning disabilities. most of whom struggle with reading. and the national certaintier for -- center for learning disability estimates that 15% of children study due to a learning issue. so i sit before you eager to tell our story but hopeful you will have an-similar challenges 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 in dyslexia and learning disabilities. and third, and most importantly, all of us must have high expectations for students with dyslexia.
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so let me tell you a little bit 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, and she is dyslexic be, but she never uses that 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 over 3.7. next year she will be at high line community college with a soccer scholarship. and after that, she plans to finish college at a four-year school to earn her degree with sports management with a sports psychology minor. i'm proud to say that jocelyn received the 2016 thomas scholarship from the national center for learning
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disabilities. that's jocelyn now. but for over the past 13 years we've had our ups and downs. when jocelyn was in nournlg grade she was struggling with reading and started becoming withdrawn from school. at the epdz of fourth grade, jocelyn was evaluated for special ed daigs and found to have an above-average iq with significant dyslexia, poor fine motor skills and severe test anxiety. she also has had challenges with writing, 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 fourth grade. 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 for her teachers to teach in a way that works for her and allow her to show what she knows in a more
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accurate way. but for me as a mother what is of paramount importance is jocelyn that's talked to the grade alongside her peers. and accommodations have allowed jocelyn to access the great level content and even above level grade content. in fact, through her four years at east high xood jocelyn took honors and ap classes in addition to her regular classes. it was an amazing special ed teacher who helped jocelyn navigate some challenging situations along the way. for example, when some of jocelyn's teachers were unfamiliar with dyslexia, jocelyn, kerry and i helped educate them to dispel the myth that dyslexia is a sign of a low iq or when some of the teachers were reluctant to give loss jocelyn aaccommodations, she used the skills kerry helped her develop to explain why she needed the accommodations. 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 to
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explain to them twha it's like to be dislevel ick. throughout our joorny we have used these experiences to help hoers understand what dyslexia is and most importantly what dyslexia is not. resources like the of 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'm a better mother and person because of our journey, and that jocelyn's future is limitless because she's an mazing young woman with much to give the world. >> thank you. i get to ask questions first. we each have five minutes. dr. eden, in your written testimony you talk about how your daughter that was a stupid test, she didn't want to do it. it there's akind of a theme that all of the children that are dyslexic there is anxiety,
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et cetera, but she read adequately so she was not identified on needing intervention. but once you had the intervention she went from 16th percentile to 75th percentile. so i'm struck she could have muddled around in the middle, never being recognized, it was only the concerned parent that was able to do so. would you elaborate on that? >> senator cassidy, once you have children, you learn all sorts of things that you thought you knew as a researcher. i think one of the thirngs that i learned is that the kind of testing that we do in the laboratory is very different than 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 okay when they're reading texts with pictures next to it. but 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 those
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are the weaknesses that are interfering with her ability to learn and read the material that she's being given. so i think 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 how confused i was between the difference of what i saw in my child at home and in this school and using the kinds of testing that i was familiar with. and i think it's -- people need to understand what those different things are and how we use all of those different sources of information to identify and help our children. >> dr. sheawood, if the woman who does the research is the president of the organization is confused regarding her daughter, i have a daughter, too, so maybe that's just an issue of having daughters, that said, it kind of begs the question whether we should allow this to be discovered by a teacher
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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? >> i don't think it would be difficult. i think 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 na the achievement grap is not onl present in first grade, it's very large and it doesn't go away. there are many -- >> that's not a reading gap. that is an achievement gap. >> that's correct. and it can be done -- we at the o-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. i think that the important thing is to think it's not a developmental lag. it's not going to be be outgrown. it's not because he's a boy or because he has a december
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birthday. too many children are missed, and that's really a tragedy because, as we heard amir so excellently talk about, what it feels like when you're in school and you have to read aloud and the reactions of the other children and teachers have to recognize that. and also to listen to parents because parents see the child and see the struggle when they get home. so i don't think it would be difficult at all, but i think the important thing is awareness, to be aware that it's already there and then to take action. >> now, amir, you're in public school. teacher teachers, you were having difficulty reading. how did your teacher intervene? or did she or he intervene? >> well, i never had a teacher intervene. it was -- i was just sort of passed on from grade to grade to grade. looking back, how awful this was because someone should have took
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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. so 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. but if we do address this problem, we can curtail the prison population and violence as well. >> ms. hanreth, would your child's teachers, how did they respond? >> my child's teachers did not even realize she was dyslexic. her first three teachers were first year teachers. they viewed the way she read is she was young in her classroom.
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one 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. so i actually took it upon myself to have her tested. that's when i found out she was dyslexic. >> senator? >> 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 so we want to thank you really for your contribution already. i'd like to turn to mr. baraka. sir, your system is so much like what we see in baltimore. dr. mahone at kennedy krueger, if you look out the river in east baltimore, when one side 12 blocks down, you look towards the harbor, and people doing very well and very prosperous. but if you look on the other side, it's usually in our poorer
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neighborhoods where drug dealing is going on. we have real issues in baltimore, and we're always accusing our schools of failing and our kids of failing. so what you lived through is kind of what we hear every day, right, dr. mahone? so my question to you is, here you are, you were a rough-and-tumble guy in the streets and neighborhoods and the streets became your friend and the streets became your teacher. what would have helped you to make a difference? >> i think, in my opinion, early detection would have definitely deterred the road that i had chose. like sid 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 think i would have definitely -- if i -- you know,
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as i was walking from the hotel, i was telling a gentleman earlier, rhyme walking to the capitol and looking at this vast amount of property and these big buildings. 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 -- >> you're a louisiana guy. i would have been him. >> yeah, yeah. i don't want to take his job. but i always felt as though i was someone, but it stayed that dormant. when i got to prison, a guy told me how brilliant i was because i was telling him about -- >> who was this guy? >> his name was norman spooner. he was a -- he is an inkars rayed person. i would tell him how i would get drugs from california and bring them down, you know. he said, you are brilliant. you are somebody. >> you are brilliant. >> i never heard somebody tell me that i was brilliant and that i was somebody. >> but in prison you read "malcolm x". >> yes.
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>> how did you get started in prison? was there an evaluation of you in prison? >> yes. >> you read "malcolm x"? >> yes. when you enter into a prison, you have to be tested. everybody has to be tested. i was found to be on a third grade level. so i read "malcolm x" but i floundered through that book. but i understood what malcolm stood for and i understood what malcolm did. i was facing a six-year prison sentence, and i said to myself, i said, god, if i get six years, which i was guilty, i'm going to educate myself somehow, some way, i want to emulate malcolm x. i want to do something for my people because he did it. i saw many people behind me was taking the same pathway. 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. >> but did prison teach you to read? >> that's where i became -- >> or did you -- >> that's where i began -- >> were you self-taught in prison? >> i was self-taught in prison,
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yes. >> so there wasn't a program that said, well, this guy baraka is pretty smart of the he's reading at the third grade level. was it again the bigotry of low expectations, drug dealer, manslaughter, we know that profile? >> yes. >> you know how that narrative goes. >> absolutely. >> fairly typical. >> absolutely. >> but did anybody say, okay, we've got that, let's find out why? >> no. no. there was no help for me there. >> was this a state prison? >> yes. state prison. >> do you feel -- this isn't meant to be a peppering to you but just in my short time here left in the questioning -- because unfortunately prison is at the end of the pipeline. we would want this early screening so much sooner. but do you feel that for many of our men and women in prison, that this is one of the areas that if we want to prevent
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recidivism and do second chance along with criminal justice reform that really different kinds of evaluation when you come into prison would be helpful? >> absolutely. >> and a real intervention. >> absolutely. this is a titanic area because, as i said, many guys in prison cannot read. so you could make a lot of money when you can write letters. a lot of guys -- there are some guy whoz could read and write. they make a lot of money writing letters for other guys. a lot of guys in prison, i don't know if they're dyslexic, but they cannot read. what i did was i wrote down words like -- like i recall my lawyer telling me about the circumstances of my case. 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 phonics. i can't break words down. i know that word because i've said it over and over and over again. i don't know anything about
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phonics. it completely is out of my mind. >> not your thing. >> it a's not my thingist kn. i had a pile of words i would write down every day, just stacks and stacks of days. >> them you memorized them. >> i memorized the words. if we could get something like this in a prison institution and help men to build on their phonics, i think that we could, again, as i said earlier, reduce that. you know, when i learned to read there was this croy joy, there was this hope, imsomebody. i can do something. it give uz encouragement. it gives you motivation to say, i can read. i th think that's sun wf the most powerful things in the world, to read. now ha i read, i read all the time. i'm reading sally's book. i'm excited about reading it. >> well, thank you very much. my time is up. i have many other questions for the witnesses, i hope we get a second round. >> senator bennett.
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>> thank you, mr. chairman. thank you very much for holding this hearing and thank you to the panel for your excellent testimony. mr. boyz and ms. hanreth talked about the importance of early detection, and mr. baraka shared his views about the costs of not having early detection. and i remember extremely well my parents sitting me down and telling me that i was going to repeat the second grade. in my deep disappointment that my friends were leaving me behind and i remember the year i spent in that second grade classroom tracing letters in sand that were glued to cardboard, cards. but in the end, that hard work, as mr. boyce talked about and mr. baraka also talked about, and the intervention allowed me to compensate for my dyslexia.
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and i'm sitting here today partly i think because of that early detection. 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, high quality early childhood education, might actually help us wrestle with this problem as well. don't know who would like to go first. dr. mahone. >> i agree that early identification is really create, 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. so i agree that it needs to be
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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 and 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 4 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 screening for appropriate -- appropriate screening for dyslexia at the level of 5 years old or 6 years older, 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 be ready to screen and work with children who may be experiencing
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some of the risk fact rs and some of the early signs of dyslexia that emerge sometimes as early as 4 years old and before and can be detected. but our pre-k and kindergarten teachers need to be trained in developmentally appropriate methods. >> i think before we do any of that, there has to be greater public awareness of what dyslexia is. so it's not just training people in administering a measure but to understand the whole of it. you mentioned you don't know phonics, but you read. i think it becomes very, very important for teachers, we 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. so i think in a way the education of educators needs to expand so that they learn in class but they also learn from experience so they see people
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who are dyslexic are not stupid and they're 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. >> thank you. i'm running out of time here. but as a former school superintendent, i also listened to some testimony today i think from dr. mahone about the importance of treating the whole child. you know, many children with disabilities 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/mental effects of learning disabilities are in young children and how we can better support the full range of children's needs. >> thank you. it's complicated because
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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. so there are a number of risk factors that we know that go along with dyslexia, along with a number of conditions, real conditions, that seem to coexist with dyslexia that complicate the picture. and 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 beyond the dyslexia, including living in poverty, having poor opportunities to have really quality instruction, having other kinds of psycho pathology that may interfere with learning in other ways. that isn't dyslexia, it's something different, but nevertheless the result is poor achievement. >> i'm out of time, mr. chairman. i will yield back.
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thank you. >> thank you. senator murphy. >> thank you very much, mr. chairman, senator mikulski for having this hearing. let me just add a story to the mix here. it's a constituent from newtown, connecticut, she noticed early on that her son bryan's preschool years, during his preschool years, that he had a speech delay and that bryan struggled to learn letters in kindergarten first and second grade. but 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. now, this is standard in part because tests don't start until third grade, but at this point bryan'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.
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he received specialized instruction and accommodation but learning to read was rocky. event live bryan was able to decode words and read, but he still struggles today. he's 19 years old. 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. but he had to work and his parents had to work especially hard because it took so long. they had to fight so hard to get him the appropriate programming. so i'm totally on board with the idea that we need to do better, that this is a crisis, as dr. sheawood says, and i hear it every day in connecticut. and i guess here's my only question, and i'll pose it maybe first to dr. sheawood and then ask dr. eden and others to remark on this. you know, all we know and i'm sure it's been said 80% to 90% of students with learning disabilities have dyslexia.
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it's often co-0 occoccurring wi other disabilities. how did 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 and end up in a result that robs peter to pay paul? i know that's attention so let me ask in particular, dr. sheawood and dr. eden, to just 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.
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>> well, that's a great question. first of all, let me just say that every child should get what they need. and i think what's really important is this hearing is about science informing education. so i think when we have the science, we have to use it. if we have a drug for breast cancer and not for pan creigh the ick, 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. so i think in the case of dyslex dyslexia, we have the knowledge, and in my own mind, you know, you're aware of -- i know senator murphy 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. so i think we have to use the knowledge we have.
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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 chirp. but 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, you know, as a mother and as a grand mother, i know how i worry and i care about my children and grandchildren, and mothers of all children and fathers feel the same way. so i think we have to use the knowledge we possess and have to make sure we do it for all disabilities. but 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. >> dr. eden, a quick response?
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>> thank you, senator murphy. i think the other thing to add here is the focus on dyslexia and research has opened a lot of eyes in terms of understanding about teaching reading in general. so i would say many children have benefitted by there being more information about how best practices about teaching we ini reading. but i think it's a model of understanding disorders more generally, how do you work with the school system? how is it that the research that is 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 giving those and they're using them they're not using them the way the research is intended? there's a gap here, 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 for expensive programs but there are expensive programs that don't work. we have another very interesting problem here which in the
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absence of knowledge, in the absence of research, in the absence of educate pell and 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 children. these are all problems that you have with any kind of situation where a child is failing to reach their potential. so really dyslexia serves as a model to help us understand the full range between kind of 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. >> thank you. >> thank you very much. mr. chairman? >> senator warren. >> thank you, mr. chairman. and thank you for your passion for bringing this issue up and your advocacy on behalf of those who are affected by it. you know, one area that i know that all of us are very much in agreement on is that we need education for biomedical
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innovations, the need for increased investments in research in this area. we've already hearnlearned a lo about dyslexia from a search fund funded by the department evident occasion, 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 means that we now have some evidence-based interventions that are leading to improved educational outcomes for our kids with dyslexia across the country. but there still is a lot that we don't know. dr. mahone, i'd just 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? >> thank you. i think we are on the verge of
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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. but the next question is, how do we translate what we've learned into practice that really gets at the root of the problem? i think we are on the verge of that right now, and 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. but 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. >> thank you. i really appreciate your talking about this. you know, whether we're talking about alzheimer's or als or cancer or dyslexia, we know that
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one of the smartest thing that's 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. but over the last ten years congress has decimated the budget for nichd, cutting its purchasing power by nearly 20%. 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
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get this done. i hope we can get there because today's hearing is just one more example of why fitching our research funding problem is just too important for us to walk away. now, 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. >> we're going to have a second round if you wish. >> i'll hold on. >> you have a minute 15. >> i'll yield and go on to my next round. thank you. >> senator casey. >> thank you, senator cassidy for having this hearing. senator mikulski, we're grateful for 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 -- we have a lot of great panels here, but this is indeed an all-star panel for a lot of different reasons. so 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, your
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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. that's part of the learning process for you us. but it's all the more significant when you can bring your own personal story. jocelyn, i want to say to you congratulations both for your academic and athletic achievements. i always wanted an athletic scholarship to college. just wasn't in the cards. so i'm grateful and it's difficult to do one, to be recognized for one versus the other, but 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. but i didn't want to focus first of all on your three points
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because sometimes we leave here and we've learned a lot but then it begins to fade over time. i think it's important to remember those three concepts, identify, train, and set high expectations. all three critically important. i think 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 add rsorrow cattle. you've turned her into her own self-advocate based upon your testimony. so 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 i guess is more technical about this. we've heard, my staff and i, from folks in pennsylvania about this transition from high school
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to college and having strong transition services important to students with a learning disability. what's your experience with that? what can you 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? >> thank you, senator,or 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 retest in order to receive accommodations in college, which was shocking to me because i am
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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? and she said no. she'll always be dyslexic. so i wouldn'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 case load of 40 students. her transition work is basically a checkbox. once a year someone comes in, talks to jocelyn for five many minz as said, are you going to college? are you taking classes? good job, checks the box and that's all. so there is not really anything given to us in utah as far as transitioning to college. and 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.
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but it is not that simple for most kids and it's impossible for them to many times retest because the testing costs so much money to be able to access special education in college. >> i appreciate that perspective because what we're trying to do -- 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 there was a great effort by this committee to take no child left behind and reform it, shake it up, change it. and a lot got done. i was just looking at the list of things that might be applicable here. a senator developed assessment tools to support the identification of students with disabilities, including dyslexia. evidence-based instruction materials, professional development. so we have the outlines of it, but i also want to make sure we're not missing a piece when it comes to that transition but
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in particular not having -- having that iep not be adequate and having new evaluations done, which might be dix for a lot of families. i'm out of time. maybe what i'll do is pose a question for the record to the other witnesses so we can get at this issue. mr. chair maman, thank you very much. >> we'll have a second round and i'll begin. mr. boyce, on page 4 bottom of your paragraph, first, i'm struck. in your written testimony you speak about how your dad kind of would verbally teach you, this socratic method. so you didn't need to read and you could just kind of download everything your dad knew about history sort of thing. and then you describe how your son for ten years had four hours of tutoring every day. now, that takes some jack. so your last paragraph, some
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students with families can afford the best. they're fortunate to have their dyslexia identified, understood and treated early. the vast majority not so not nat and their future and future contribution is at risk. senator warren and i mentioned briefly this is really i think an issue of middle class economic opportunity. your thoughts on this? >> i think that the right to an education is one of the most basic civil rights that we have. and i think that 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
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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. we're not doing that now. >> so i'm struck. it's not just so unlike mr mr. baraka who obviously tragic story but finished well, but 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. so if we have 20 -- and dr. mahone says there's not many districts screening. i'm not sure there's any districts screening. there's not a district that we know of that screens all incoming kids for dyslexia.
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if you have a condition that affects 20% in one way or another, you're an attorney, you spoke of civil rights, is it excusable that we're not screening? you i mean, this is not 1% or 2%. the cost/benefit ratio is huge. >> senator, it's inexcusable. 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. but 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. >> you know, i think i know that it costs about $50,000 a year to incarcerate somebody. so if you broke down the silos and said, well, we could redirect some dollars it would make a big difference. >> it is the definition of penny wise and pound foolish.
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>> your child, if i may ask, was he identified early by a teacher or just because of your family history you knew to watch? >> it wasn't so much the family history, but he was a twin. his brother jonathan was very verbal, and in kindergarten was reading and very -- and christopher was struggling terribly. so 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. and 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
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high school. he performed well in college, although he had a hell of a time getting into it. and he performed great in law school, although again the standardized tests because he did not get accommodations predicted that he would fail. he graduated from yale law school with honors, but his lsat would have predicted that he couldn't have succeeded. >> the standardized testing option i thought what you said was very provocative. i'll defer now to senator mikulski. >> thank you very much. i want to associate myself with remarks of senator warren in terms of the need for more biomedical research. but also i'm going to go back to my original remarks when we need to put that research into action and then when you look at the way we do not fund programs like
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i.d.e.a., then groups with running challenges are pitted against each other for resources. the very things that we just talked about here earlier. so we need a multifaceted approach here. 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? i was 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, dr. bernadine haley, we were able to change that. which validates this exactly. could you tell us though what your findings are because you think the brain is the brain, that it's kind of the brain is gender neutral. >> thank you, senator mikulski.
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i think 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 brain of women and men and boys and girs are different. they're different in their anatomy. they're different in the hormone that's bathe the tissue. and also it goes hand in hand with some of the differences we observe in boys and girls as they develop early on. and i think the important part here is to recognize that early research for reasons that aren't fully clear often did focus more on boys. so 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 with all people with dyslex dyslexia. now we're beginning to focus more on sex-specific differences and the nih now requires when we submit research grants we consider sex so we have very specific questions about do the kind of questions we're asking, the high poj these we're
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approaching, are they -- is that part of our hypothesis? i think that's tremendously important. >> how has it manifested itself? >> i think 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 that appear to be equal, but under the surface in the brain the mechanisms that are invoked to do the tasks are very, very different. then you ask the question, what happens if those mechanisms then interface with a learning disability? how do the female friebrains red versus the male brains? we don't have the answer to those yet because we haven't done the research. doing more research in that area is really, really critical. i think we'll see more research because of the mih mandate. >> thank you. i'm going to turn to -- let's hear it for the mothers. i'm going to call you like a
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night hawk because i was the aund other mothers and dads stay up at night kind of cruising the internet avoiding scams and schemes, yet trying to come up with approaches. could you tell us, what worked for you as a mother even to know what to do? when you mentioned the group, they understood. also, you paid for your own testing for your daughter, which was honestly extremely expensive. so what did you run into? and 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? and what was your best friend? was it the internet? >> certainly. at the very beginning when -- my daughter was actually tested by the school district at the end of the fourth grade.
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her grandmother had died the week before. they tested her. they came back with the result that's she had an iq of about 80. 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, if i may, ms ms. hanreth, you said, i found a ne neuroscientist. you don't go to craigslist for that. tell me, in other words, how did you do that? >> i did that because i have an older son who also has learning disabilities and he had a specialized tutor. so i went to the tutor and i
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said, who is it that i should have my daughter tested by? >> you did the research on your own. >> yes, it was on my own. >> but you have whereer live an institute you could have turned to? >> 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. >> right. but see, here we have georgetown to turn to, kennedy krieger, we would have a new haven, the yale center. but you were on your own and you did this through a tutor. >> yes. >> and you got the results. >> and then i decided that i had to come up with a solution. the neuropsychologist was wonderful. she gave me 23 pages of accommodations. so when i went to my first iep meeting i took the 23 pages in and i said, i want you to accept all of these. and no one argued with me. so it was immediately attached to jocelyn's iep, and i kept
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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 so i had to rely on the school system but mostly myself, my inventiveness. >> could we ask what that understood and what that meant? see, we have a path that looks -- look at the struggle here. this is -- could you just tell us about -- >> i would love to tell you about understood. i'm a single mom. at night i would wake up. i was worried about jocelyn. >> so you were a nighthawk. >> i had to be because i wasn't sleeping. and i found this incredible website called and i could plug into the fact that jocelyn was dyslexic and what age she was and i could
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read about it. then there were parent forums and i could talk to somebody at 3:00 in the morning, someone who understood where i was coming from and who would get back to me. i could watch videos from experts. i could listen to archive 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, thank you. >> senator warren? >> thank you, mr. chairman. and thank you, senator mikulski for your remarks on research and the importance of making sure that we have adequate nih funding. and also thank you dr. eden for reminding us 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 into training teachers for the classroom. this is a special topic for me because i was a special needs teacher a long time ago.
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ms. hanreth, let me start with you. first, congratulations on your daughter's graduation, pending graduation from high school. i know you are very proud, and jocelyn, way to go. it is good to have a success story here. we're delighted to have you here today. but in your testimony you talked about the importance of supporting educators by giving them training about dislevvel area and other learning disabilities. can you talk more about that, 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? >> thank you, senator. without kerry, there is 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
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rights. she new things i didn't know. if we did not have kerry, if kerry 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. so 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. >> thank you. that's very important.
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maybe that means i could 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? >> thank you, senator warren. i think that is of course the big question here. that's where i think we will need more resources and i think we need to make some changes in the way people think about their role in all of these things. so it's very frustrating as a scientist you see test that's are out there that predict to a very high degree which children are -- those same research data have made it into benchmarks tested on schools. 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 educate the teachers to use it effectively. i think one of the problems we have in research is that we don't do enough to make sure
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that the findings that we have are implemented in a way that they are actually useful. you've put in a lot of money. you have the information. but it's not going the full length to actually then benefit from the child who needs those to be identified. and i think 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 the -- comes about. others will fill that void. parents are online all the time doing an evaluation is expensive. you think that's xpenive, getting the treatment is really expensive. then uf find an alternative, maybe not quite as expensive. it's based on something 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 papers. 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 isn't
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research based. 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. so all of these things have to be moved forward hand in hand, and sort of it's interesting to hear how teachers learn from the understood website, things that you would think they learn in the school of education but apparently they don't. so 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. >> 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
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we could be doing much more of this by investing more in title 2 of the new education law which supports teacher development. but 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 i.d.e.a. over 40 years ago to ensure that teac r teachers would have the necessary resources to support students with disabilities, although the program was designed to support 40% of the additional costs of educating student with disabilities, congress has repeatedly failed to meet this commitment. that's why i sponsored the i.d.e.a. full funding act last congre congress. i would increase funding over ten years until congress fully meets this commitment. i've sent letters to the appropriations committee about this. i intend to keep fighting for
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full i.d.e.a. 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. >> thank you. again, thank you senator mikuls mikulski, thank you to the witnesses and attendees. there will be a reception afterwards if people wish to stay and linger and have further conversation. i'd like the witnesses if they
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have something they wish they 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 ten 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. adjourned. >> thank you very much.
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white house press secretary josh earnest spoke about president obama's upcoming visit to japan. the president will visit the hero shee ma memorial on 27th at the conclusion of the g-7
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summit. it seemed like the white house in addition to announcing one of the really stressed that the president was not going to apologize in any way or the bombing of hawaii howhat would so wrong with the apologizing of that. >> well, obviously, this is a question that historians have considered. it's an entirely e legitimate line of inquiry. the president intends to visit to send a forward looking signal about his ambition for realizing the goal of a planet without nuclear weapons. this also is an opportunity for the visit to highlight the
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remarkable transformation in the relationship between japan and the united states. if you would have imagined that one of our closest partners and allies in asia was japan just 70 years ago, it would have been very difficult to imagine given the hostilities between our two countries. >> book tv has 48 hours of nonfiction books and authors every weekend and here are some programs to watch for. saturday on afterwards, don watkins. >> the reason inequality isn't a problem is away we're concerned with is not how much money do you have, but did you get it through something that was fair or through a process that was unfair. and when you try to equalize people who earn their money honestly, that's something that we're challenging and saying that's not a fair way to treat people. >> in the book, mr. watkins says the american dream is threatened
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not by income inequality by limiting success. on sunday afternoon at 4:30, iraq and afghanistan war veteran and former ceo of vets for freedom talks about theodore roosevelt's citizenship and offers had his revisions for americans today. >> this book is not about me. it's not about roosevelt or litigate wrg he is on the political spectrum. it's a call to action. to me, it's meant to inspire u, motivate and remind americans of every generation what makes america special. and that it is worth fighting for. and some of us carried a rifle. and many in this generation still do. you don't have to carry a rifle to be in the arena. it's our job to instill the principles that perpetuate what is is an experiment in human freedom. >> then a at 10:00 p.m. eastern, erin mchugh. >> what should be a series of
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thoughtful activity on which the future of the country rests is filled with budgetary tight rope routines, sparkly cows tombs, disappearing acts and clowns. it becomes three rings of horror. we're sofa teeged by the time the mud is slung, the skeletons have come out of the closet and election day is over that we're exhausted by new legislators before they had his chance to start their jobs. >> she recounts missteps in american history. go to for the complete weekend schedule. next a conversation on how to regulate what's shared over connected computer networks. california congressman daryl issa was among those participating in this technology forum titled "the internet of things." it was hosted by the hill newspaper and includes a panel with representatives from at&t and the federal trade commission.
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>> good morning, everyone. welcome to the museum. the hill is excited to be hosting the discussion sponsored by visa on "the internet of things." in addition to the audience in the studio. we're live streaming. if you're interested in engaging, follow at our events on twitter and comment using the hill tech forum. i'm going to introduce our first guest daryl issa. congressman sits on the house committee on the judiciary and subcommittee on courts,


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