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Grace Goad, an artist and a high school senior, will be transitioning next year into a community-based classroom. Her mom Leisa Hammett has nurtured her talent and prepared for her future through art exhibits and sales (GraceArt, www.gracegoad.com). V anderbilt Kennedy Center researchers studying interventions for adolescents and young adults with autism, in an August report, found that evidence is insufficient to support findings, good or bad, for therapies currently used. Although the prevalence of autism is on the rise, much remains to be discovered when it comes to interventions for this population, the researchers concluded. “Overall, there is very little evidence in all areas of care for adolescents and young adults with autism, and it is urgent that more rigorous studies be developed and conducted,” said Melissa McPheeters, Ph.D., M.P.H., director of Vanderbilt’s Evidence-Based Practice Center and senior author of the report, a systematic review of therapies published by the Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ). Zachary Warren, Ph.D., director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders, said, “There are growing numbers of adolescents and adults with autism in need of substantial support. Without a stronger evidence base, it is very hard to know which interventions will yield the most meaningful outcomes for individuals with autism and their families.” Key Findings The researchers systematically screened more than 4,500 studies and reviewed the 32 studies published from January 1980 to December 2011 on therapies for people ages 13 to Continued on page 2 Autism Therapies for Adolescents More Evidence Needed BY JENNIFER WETZEL Pay It Forward............................................................................................................................... Baby Sibs—A Window Into Autism................................................................................................ Susan Gray School Transformation............................................................................................... Dollar General Youth Literacy Grant............................................................................................... 4 5 8 10 VANDERBILT UNIVERSITY/MARY DONALDSON Is More Better? Down Syndrome Language Intervention BY PAUL YODER, PH.D. E ducation has only just begun to study how often treatment sessions should occur to maximize benefit to students. We conducted a study to find out whether daily treatment sessions were more helpful than weekly sessions for improving spoken vocabulary in children with Down syndrome and in children whose intellectual disability has other causes. Past research has shown that children with Down syndrome tend to have more trouble learning to speak than children whose intellectual disability has other causes. We hoped that daily therapy, an unusually high rate of therapy, might provide the extra help that children with Down syndrome need to make the difficult transition to spoken language. The Language Treatment Our treatment method was Milieu Communication Teaching (MCT), which has 3 parts. The first part teaches children to use gestures, nonword vocalizations, and eye contact to ask for things/actions, to communicate liking something, or to take turns. This follows the principles of Prelinguistic Milieu Teaching. Research has shown that children communicating in these ways predicts later language growth and provides a rich opportunity for parents to respond in ways that teach spoken words. The second part teaches parents to notice their children’s nonverbal communication and then to respond in ways that are thought to teach children to use and understand words. We followed the curriculum Hanen It Takes Two to Talk. Continued on page 3 BILL BANGHAM Number 37 | Fall 2012 | Vanderbilt University

Is More Better? Down Syndrome Language Intervention BY PAUL YODER… · 2012. 10. 25. · InterventionBY PAUL YODER, PH.D. Education has only just begun to study how often treatment

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  • Grace Goad, an artist and a high school senior, will be transitioning next year into a community-basedclassroom. Her mom Leisa Hammett has nurtured her talent and prepared for her future through art exhibits and sales (GraceArt, www.gracegoad.com).

    Vanderbilt Kennedy Center researchers studying interventions for adolescents andyoung adults with autism, in an August report, found that evidence is insufficient tosupport findings, good or bad, for therapies currently used. Although the prevalence of autism is on the rise, much remains to be discovered whenit comes to interventions for this population, the researchers concluded. “Overall, there is very little evidence in all areas of care for adolescents and young adultswith autism, and it is urgent that more rigorous studies be developed and conducted,” saidMelissa McPheeters, Ph.D., M.P.H., director of Vanderbilt’s Evidence-Based Practice Centerand senior author of the report, a systematic review of therapies published by the Departmentof Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ). Zachary Warren, Ph.D., director of the Vanderbilt Kennedy Center’s Treatment andResearch Institute for Autism Spectrum Disorders, said, “There are growing numbers ofadolescents and adults with autism in need of substantial support. Without a strongerevidence base, it is very hard to know which interventions will yield the most meaningfuloutcomes for individuals with autism and their families.”

    Key FindingsThe researchers systematically screened more than 4,500 studies and reviewed the 32studies published from January 1980 to December 2011 on therapies for people ages 13 to

    Continued on page 2

    Autism Therapies for AdolescentsMore Evidence Needed BY JENNIFER WETZEL

    Pay It Forward...............................................................................................................................Baby Sibs—A Window Into Autism................................................................................................Susan Gray School Transformation...............................................................................................Dollar General Youth Literacy Grant...............................................................................................

    45810

    VANDERBILT UNIVERSITY/MARY DONALD

    SON

    Is More Better? Down Syndrome LanguageIntervention BY PAUL YODER, PH.D.

    Education has only just begun to study how oftentreatment sessions should occur to maximizebenefit to students. We conducted a study to find outwhether daily treatment sessions were more helpfulthan weekly sessions for improving spoken vocabularyin children with Down syndrome and in childrenwhose intellectual disability has other causes. Past research has shown that children with Downsyndrome tend to have more trouble learning tospeak than children whose intellectual disability hasother causes. We hoped that daily therapy, anunusually high rate of therapy, might provide theextra help that children with Down syndrome needto make the difficult transition to spoken language.

    The Language TreatmentOur treatment method was Milieu CommunicationTeaching (MCT), which has 3 parts. The first part teaches children to use gestures,nonword vocalizations, and eye contact to ask forthings/actions, to communicate liking something, or to take turns. This follows the principles ofPrelinguistic Milieu Teaching. Research has shown thatchildren communicating in these ways predicts laterlanguage growth and provides a rich opportunity forparents to respond in ways that teach spoken words. The second part teaches parents to notice theirchildren’s nonverbal communication and then torespond in ways that are thought to teach childrento use and understand words. We followed thecurriculum Hanen It Takes Two to Talk.

    Continued on page 3

    BILL BANGHAM

    Number 37 | Fall 2012 | Vanderbilt University

  • Director’s MessageTravel the Road to Discovery

    30 with autism spectrum disorders. They focusedon the outcomes, including harms and adverseeffects, of interventions, including behavioral,educational, vocational, and medical. Behavioral and educational therapies. Someevidence revealed thattreatments couldimprove social skills andeducational outcomessuch as vocabulary orreading, but the studieswere generally small andhad limited follow-up. Vocational therapies.Only five articles testedvocational interventions,all of which suggestedthat certain vocationalinterventions may beeffective for certainindividuals, but eachstudy had significantflaws that limited theresearchers’ confidence in their conclusions. Theresearchers’ findings onvocational interventionswere featured in the Aug.27 issue of Pediatrics. “With more andmore youth with autism leaving high school andentering the adult world, there is urgent need forevidence-based interventions that can improvetheir quality of life and functioning,” said JulieLounds Taylor, Ph.D., assistant professor of

    Pediatrics and Special Education and lead authorof the report. Medical therapies. Limited evidencesupported the use of medical interventions inadolescents and young adults with autism.

    Despite studies thatshow that manyadolescents andyoung adults withautism spectrumdisorders are being prescribedmedications, there isalmost no evidenceto show whetherthese medicationsare helpful in thispopulation. Thesefindings werefeatured in the Sept.24 issue of Pediatrics.“We need more

    research to be able to understand howto treat coresymptoms of autismin this population, as well as commonassociated symptomssuch as anxiety,

    compulsive behaviors, and agitation,” said JeremyVeenstra-VanderWeele, M.D., assistant professorof Psychiatry, Pediatrics, and Pharmacology.“Individuals, families, and clinicians currentlyhave to make decisions together, often in a state of

    AUTISM THERAPIES FOR ADOLESCENTS from page 1

    2 Fall 2012 | DISCOVERY

    desperation, without clear guidance on whatmight make things better and what might makethings worse, and, too often, people with autismspectrum disorders end up on one or moremedications without a clear sense of whether themedicine is helping.” The most consistent findings were identifiedfor the effects of antipsychotic medications onreducing problem behaviors that tend to occurwith autism, such as irritability and aggression.Harms associated with medications includedsedation and weight gain.

    The ReviewAs recently as the 1970s, autism was believed toaffect just one in 2,000 children, but newlyreleased data from the Centers for Disease Controland Prevention indicate that 1 in 88 children hasan autism spectrum disorder. Boys with autismoutnumber girls 5 to 1, which estimates that 1 in54 boys in the United States have autism. Additional investigators on this report includedDwayne Dove, M.D., Ph.D., fellow inDevelopmental-Behavioral Pediatrics; Nila Sathe,M.S., M.L.I.S., program manager, Institute forMedicine and Public Health; and Rebecca Jerome,M.L.I.S., M.P.H., assistant director, EskindBiomedical Library. Their research, published in the report,Interventions for Adolescents and Young Adults withAutism Spectrum Disorders, was funded by theAgency for Healthcare Research and Quality’sEffective Health Care Program and conductedthrough Vanderbilt’s Evidence-Based PracticeCenter.

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    Evan Shouse, age 16, stocks cafeteria displays at FranklinHigh School as part of his prevocational training at school.

    Your gifts and dedication are making a positiveimpact on science, scientists, and individualswith disabilities. Collectively, we thank you. Now more than ever, annual gifts remaincritically important to the basic and clinicalresearch mission of the Vanderbilt KennedyCenter. Every dollar you invest in our talentedresearchers returns many more dollars in largergrants from the National Institutes of Health(NIH) or other agencies. Your support allows us to collect the critical preliminary data needed tosuccessfully c ompete for increasingly preciousNIH grants. Nicholas Hobbs Discovery Grants are

    supported by your annualgifts. As I write, we arereviewing a dozen applicationssubmitted by talentedmultidisciplinary researchteams proposing innovativeresearch. With Hobbs DiscoveryGrants, VKC investigators aregathering data to addresspressing needs. Our center is a hub for talented scientistswho tackle other toughquestions on the causes and

    best possible outcomes forindividuals with autism, learningdisabilities, Down syndrome, andother disabilities. As a way to continue to

    recognize our dedicatedsupporters, Vanderbilt recentlylaunched the Oak Leaf Society,which focuses on giving loyaltyas measured by consecutive yearsof giving rather than the amountof the contribution. Join with us on the road todiscovery.Elisabeth Dykens

    VANDERBILT UNIVERSITY/MARY DONALD

    SON

  • allowed us to visualize well each child’s spokenvocabulary development. Our primary measure ofgrowth in spoken vocabulary came from the checklistof words that parents had heard their children use inthe last month. By using parents’ knowledge of whattheir child said, we could track each child’s use ofwords, not just in our clinic visits, but everywhereand at any time parents heard their child talk.Parents completed this checklist every 3 months. Third, children received the planned quality andquantity of treatment. At least 98% of the sessions

    lasted our target of at least 45 minutes a session. Evenyoung children could tolerate (and usually enjoy)sessions that lasted longer than we had tried in thepast. The average treatment duration was a littleunder 9 months. Our staff treatment providers alsomet our goal of providing an average of at least onecorrectly implemented teaching episode per minute.

    IS MORE BETTER? from page 1

    The third part starts when children begin to usewords in treatment sessions. It teaches children touse words to express what they have been trying tocommunicate without words. We used a sequence ofprompts to encourage children to produce wordsand immediate rewards for talking at momentswhen children are thought to learn best. This partfollows Milieu Language Teaching principles.

    Study’s QuestionsOur study aimed to answer three questions. Dochildren with Down syndrome acquire spokenwords at a slower rate than children with otherintellectual disabilities of the same age and thesame intelligence level? Within each subgroup(Down syndrome vs. other intellectualdisability), do children receiving daily MCTsessions learn to use more spoken words thanchildren receiving weekly MCT? Is receivingdaily MCT associated with more family stressthan receiving weekly MCT?

    Who Took Part Sixty-four families took part. Children were18 to 27 months at entry. All had intellectualdisabilities and spoke little before entering thestudy. On average, the children had cognitivelevels on the 12.5-month level. Among thechildren, 35 had Down syndrome, and 29had intellectual disabilities from other causes,most of which were unknown. Almost alltreatment sessions occurred in the home.

    Study DesignThe research design was strong in several ways.First, families assigned to the weekly group weresimilar to the families assigned to the daily group on39 different aspects that can affect languagedevelopment. This occurred because families wererandomly assigned to daily vs. weekly treatment. Second, frequent assessment of the number ofwords that parents reported their children said

    FindingsAll children grew in their spoken vocabulary.Regardless of the number of times per week childrenreceived the treatment or whether they had Downsyndrome, on average, children learned to use 16new words in 9 months. However, regardless of howoften they received treatment, children with Downsyndrome learned 10 new words, while childrenwith intellectual disabilities for other reasons learned28 new words. Parents reported the same amount ofstress regardless of whether their child received

    treatment daily or weekly.If we do not consider whether or not

    children had Down syndrome, receivingMCT daily did not appear to have aclearly better effect than receiving itweekly. However, within the Downsyndrome group, once cognitive levelwas controlled, children receiving dailyMCT gained more words (mean = 17words) than children receiving weeklyMCT (mean = 5 words). It may be discouraging to hear that

    having Down syndrome can place achild at greater disadvantage for learningto use new words than a child alreadyexperiences from having an intellectualdisability. The good news is that morefrequent sessions per week can help makeup for some of this disadvantage.Additionally, adding more sessions a weekdid not cause parents to feel more stress.It has long been argued that toddlers

    with autism need more hours oftreatment per week than is provided by

    many states through early intervention programs.This study provides data to argue that toddlerswith Down syndrome also need more hours oftreatment per week.

    Paul Yoder, Ph.D., is professor of Special Educationand VKC investigator.

    DISCOVERY | Fall 2012 3

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    Autism Online Training for Tennessee Educators

    TRIAD and the Tennessee Department ofEducation have partnered to provide BasicOnline Training Sessions. They are available forviewing by Tennessee school personnel nowthrough May 31, 2013. Autism Spectrum Disorders and Principlesof Behavior and Learning. This 2-hour workshopprovides a basic understanding of the

    characteristics of ASD and how they impactlearning and behavior. The emphasis is onunderstanding the function of behavior and basic strategies for teaching students appropriatebehaviors to replace challenging behaviors. Improving Communication in Students with ASD. This 2-hour workshop providesinformation on developing functional and

    measurable communication goals, and usingevidence-based strategies, including incidentalteaching, discrete trial training, and visualsupports to improve students’ communicationthroughout the day. Registration is required. Contact Linda Copas, Director of Behavior & Autism Services,TN Dept. of Education, [email protected].

  • Hart is Coordinator of Education and TrainingServices, Tennessee Disability Pathfinder. Thefollowing are excerpts from her remarks to studentswith developmental disabilities attending the 2012VKC Next Steps Summer Institute. She is an ArcTennessee Board member and is chairing TennesseeAllies in Self-Advocacy (TASA) (tnselfadvocacy.org).

    As a person with a disability, I can relate tosome of the lessons you have learned [at theSummer Institute] because they are similar tosome of mine. I was born a little person, but I was a typicalchild until I became paralyzed at age 5. Aftermistakes made during surgery on my spinal cord, Iwoke up able to move only my head. Like anyonegrowing up, I had to learn independent living,social, and self-advocacy skills, but my disabilityhas had a major effect on learningthem. I have supportive family, friends,and professionals who have alwaysexpected me to learn these skills andhave created learning opportunities.We often don’t realize that theseexpectations contribute to ourdeveloping essential skills. My parentshad the same expectations for me todevelop these skills as they did for mysiblings without disabilities. It wasn’talways easy. Children with disabilitiessometimes experience difficultiesdeveloping social skills because theydon’t have opportunities to interactwith their peers in the same way aschildren without disabilities. After Ibecame paralyzed, I could no longerplay on the playground, so I had tofind other opportunities to socialize with my peers. Idrew pictures and had races with them as they tookturns pushing my wheelchair during recess. Sometimes having a disability can make it seemdifficult to develop friendships because of others’perceptions. A disability can be seen by otherswithout disabilities as a major difference thatmakes them hesitant to interact. It takes socialskills to make them realize that despite having adisability, we have shared interests and abilities todevelop friendships. Even though I had great friends, at times I feltleft out. Perhaps I wasn’t invited to a party, or Iwas the odd girl out in a group of friends. I couldhave assumed it was because I have a disability, buteveryone has these experiences growing up. It ispart of developing social skills.

    Pay It Forward BY MEGAN HART

    Some of the bumps in the road that I experiencedsocially have taught me how to overcome obstaclesand fulfill my own interests. I wasn’t able toparticipate in sports like my siblings and friends, but I wanted to be a part of it, so I attended gamesto cheer for them. By watching sports or playingadapted sports, we still gain knowledge aboutourselves, others, and important concepts liketeamwork.

    Growing up, we are learning self-advocacyskills. Although self-advocacy applies to anyone, it has significant meaning for individuals withdisabilities. Since we often rely on others forassistance, it takes effort to make sure wecommunicate for ourselves without allowingothers to communicate for us. A child who says “wa-wa” or points to water to communicate wanting to drink is using a self-advocacy skill. As we grow up, our needs anddesires become more complicated, but we cancommunicate for ourselves. Until we learn what all of our needs and desires are, other peopleadvocate for us, and we learn from them. I didn’tknow how to communicate all of my needs forschool accommodations when I was young, so my mom was a great advocate for me. As I became

    older, I was able to communicate those needs formyself. You will continue to have many experiencesthroughout your lives that require self-advocacy.Take advantage of postsecondary educationprograms, which help us continue to developskills. Through my postsecondary education, I developed more independent living skills andlearned to navigate a new environment. Ideveloped more social skills when developing new friendships, which was difficult at firstbecause I didn’t know anyone. The challenges Iexperienced were well worth it because I madefriends who will be a special part of my life forever. My self-advocacy skills continued to develop

    when I had tocommunicate myaccessibility needsat college. Thecampus was not yetwheelchair-friendly,but the schooladministration andmy classmateshelped make sure Icould get to where

    I wanted to be. Despite thechallenges it created, it also createdopportunities. I couldn’t complainwhen a cute group of guys offeredto carry my wheelchair up the dormsteps. The college became moreaccessible during my four yearsthere. Campus life played animportant part in my ability todevelop skills and obtain a valuableeducation.Looking to the future, you will

    continue to face challenges that arenot necessarily created by the disability you havebut are affected by the disability. You will facechallenges when trying to find a job. You willlikely change your mind several times whendeciding what to do and where to work. That’sokay. It’s part of the process. You will need toadvocate for yourself to let others know about theskills and talents you have to do a job. With everynew challenge comes an opportunity to learn moreabout yourself. I have one more piece of advice: Pay it forward.Give back what you have learned to others. Shareyour experiences and knowledge. Teach othershow to become more independent. Make othersfeel more comfortable in social situations bysharing your skills with them. Support others inadvocating for themselves.

    4 Fall 2012 | DISCOVERY

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    Megan Hart with family and friends

  • Recent reviews of the research literature on autismtherapies (see cover story) indicate the urgentneed for large-scale, well-designed studies to provideevidence that guides effective treatment. Now, alarge clinical trial is beginning to test the safety andeffectiveness of oxytocin to improve sociability andcommunication in children and teens with autism.Oxytocin is a naturally occurring hormone thatplays a critical role in sociability and bonding. “Data from single-dose administration ofoxytocin suggest some improvement in aspects ofsocial functioning. This has led to its use by somephysicians and families, but without solid evidenceof safety or effectiveness,” said Jeremy Veenstra-VanderWeele, M.D., assistant professor ofPsychiatry, Pediatrics, and Pharmacology, TRIADmedical director, and principal investigator (PI) forthe Vanderbilt site clinical trial. The trial is called SOARS-B for the Study ofOxytocin in Autism to Improve Reciprocal SocialBehaviors. It will include 300 children with autism,ages 3 to 17, at five sites in Boston, New York,Seattle, Nashville, and Chapel Hill, North Carolina. During the first 6 months, half of the childrenwill receive the oxytocin spray. The other half will

    “If this medication increases social interest, thenit could be connected to a social skills training

    intervention. Such acombination could havegreater impact than eithermedicine or behavioraltreatment alone,” saidVeenstra-VanderWeele.Based in part upon

    preliminary data from anAutism Speaks study, theNational Institutes of Healthawarded $12.6 million tofund this national clinicaltrial. “This study will be the

    largest planned clinical trialin autism conducted todate,” said Zachary Warren,Ph.D., TRIAD director andVanderbilt site co-PI.“TRIAD and Vanderbilt are

    contributing to creative ways of combining cutting-edge pharmacology with exceptional data collectionin a drive for answers.”

    receive an inactive spray. Neither researchers norparticipants will know who is taking the active drug.During the second 6months, all participantswill receive the oxytocinspray. “Half the childrentaking part will have anIQ in the broad typicalrange and intact verbalfunction, and half willhave intellectual disabilityand some degree oflanguage impairment. Wewant to know if oxytocinhelps a particular subset,”Veenstra-VanderWeelesaid. The researchers willmeasure social skills andcommunication over thestudy’s course. Inaddition, they will collectblood samples to conduct gene-based studies toevaluate whether genetic variation in the oxytocinreceptor affects response to treatment.

    Oxytocin Nasal Spray Clinical Trial BY JAN ROSEMERGY

    For the past decade, TRIAD researchers have beenpart of the Baby Siblings Research Consortium, anational network of researchers studying youngersiblings of children with an autism diagnosis. Since“baby sibs” are at higher risk for autism thanyounger siblings of typically developing children,researchers track their development in order toidentify early biological or behavioral markers.TRIAD has three ongoing baby sibs studies. TRIAD’s first study is a multi-site effort to trackdevelopment through earlyinfancy. “We’re looking atvery early skills related toattention and emotion tosee if we can chartdifferences that will help usidentify autism earlier,” saidZachary Warren, Ph.D.,associate professor ofPediatrics and Psychiatryand TRIAD director. The second large studyis aimed at improvingmeasures for early detection.

    Baby Sibs—A Window Into Autism BY JAN ROSEMERGY

    DISCOVERY | Fall 2012 5

    Currently, pediatricians typically ask parents tocomplete the Modified Checklist for Autism inToddlers (M-CHAT) at well-child visits around 2years of age. TRIAD is testing a revised M-CHATversion for younger siblings to see if it might be abetter way to screen for early warning signs ofautism. This study is open to families who have anolder child with autism and an infant sibling, 16 to30 months old. Families receive an evaluation oftheir baby sib at study entry and a re-evaluation at

    36 months.In the newest study,

    TRIAD is partneringwith researchers at 6 other universities to create the HighRisk Baby SiblingsResearch ConsortiumBiorepository, funded by AutismSpeaks and theSimons Foundation.Biological samples andclinical information

    on families with one or more children on the autismspectrum are being collected. The goal is to supportresearch on the genetic and environmental factorsthat increase or decrease risk for autism. “Family participation in research is contributingnot just to one idea, but to many ideas of value totheir own and other families as well as to scientistsacross the country,” Warren said. “We have familieswho have graciously afforded us the ability to checkin on their baby’s development at 6, 9, 12, and 18months. Now we have this ability to link that infor-mation to differences in neurogenetic pathways.” “Families are worried about younger siblingsbeing on the spectrum,” said Amy Nicholson,TRIAD psychological examiner. “We can helpfamilies track development. If concerns need to bediscussed, we’re there with families for thatdiscussion. We also can provide reassurance aboutthe positive aspects of their child’s development.Families can let us hold some of the worry so thatthey can enjoy their child.” For TRIAD studies, contact (615) 322-7565, toll-free (877) 273-8862, [email protected].

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    Recording of brain wave activity while baby sibs see objects or faces is one way that development is studiedin the VKC Psychophysiology Lab.

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  • Research Interests My research is focused on the cognitive andsocial/environmental factors that affect children’sability to learn to read. I am co-investigator on astudy that explores the cognitive andneurobiological profile associated with childrenwho exhibit late-emerging reading disability, andhow it is similar or different than early readingfailure. I conduct large-scale studies in the areas ofreading intervention and assessment. My researchinvolves modeling individual differences in thedevelopment of children’s reading skills.

    Principal Investigator • Predictors and Subtypes of Reading Disabilities: Implications for Instruction of “Late-Emergers,”Institute of Education Sciences (IES)• Response-to-Intervention as an Approach to Preventing and Identifying Learning Disabilitiesin Reading, IES• Evaluating a Multicomponent Reading Comprehension Program Designed to Addressthe Diverse Needs of Struggling Readers in LateElementary School, IES

    Honors and Awards• President, Society for the Scientific Study of Reading (2012-present)• Co-Editor, Annals of Dyslexia (2006-present)• Co-Editor, National Reading Conference Yearbook (2006-present)

    Education• B.S., 1983, Chemical Engineering, University of Michigan• M.S., 1986, Chemical Engineering, Northwestern University• Ph.D., 1993, Learning Disabilities, Northwestern University• Postdoctoral Research Fellowship, 1999-2000, Institute for Behavioral Genetics andDepartment of Psychology, University ofColorado Boulder

    Attraction to Developmental DisabilitiesResearchMy interests in studying reading disabilities firstbegan when I got a job out of college working atthe Landmark School in Beverly, MA, for childrenwith dyslexia. The year I spent teaching raised somany questions for me that I decided to go backto school and get a Ph.D. in CommunicationsDisorders and Learning Disabilities fromNorthwestern University.

    Reasons for VKC Membership My research interests revolve around helping toimprove the long-term literacy outcomes ofchildren who struggle to develop reading skills.This focus fits well within the core mission ofthe Kennedy Center. Being a VKC investigatorhas provided me with opportunities to extendmy research that would not have been possiblewithout the relationship. I value themultidisciplinary research opportunitiesafforded by being a VKC member.

    Selected PublicationsCompton, D. L., Fuchs, L. S., Fuchs, D., Lambert, W., & Hamlett, C. (2012). Thecognitive and academic profiles of reading andmathematics learning disabilities. Journal ofLearning Disabilities, 45, 79-95.Catts, H. W., Compton, D. L., Tomblin, J. B., & Bridges, M. S. (2012). Prevalence and nature oflate-emerging poor readers. Journal ofEducational Psychology, 104, 166-181.Compton, D. L., Gilbert, J. K., Jenkins, J. R., Fuchs, D., Fuchs, L. S., Cho, E., Barquero, L.A., & Bouton, B. (2012). Acceleratingchronically unresponsive children to tier 3instruction: What level of data is necessary toensure selection accuracy? Journal of LearningDisabilities, 45, 204-216. Gilbert, J. K., Compton, D. L., Fuchs, D., Fuchs, L. S., Bouton, B., Barquero, L. A., Cho, E. (inpress). Efficacy of a first-grade Responsiveness-to-Intervention prevention model for strugglingreaders. Reading Research Quarterly.

    Leading the Vanguard of Discovery

    Donald Compton, Ph.D.Professor and Chair of Special EducationVanderbilt Kennedy Center InvestigatorJoined Vanderbilt Kennedy Center 2002

    VANDERBILT UNIVERSITY/NEIL BRAKE

    Accolades BY ELIZABETH TURNER

    Shari L. Barkin, M.D., MSHS, Marian WrightEdelman Professor of Pediatrics and director,Division of General Pediatrics, has been named toan endowed chair, the William K. WarrenFoundation Chair in Medicine.

    Tracy Beard, assistantdirector of TennesseeDisability Pathfinder, hasbeen appointed to theMulticultural Council of the Association ofUniversity Centers onDisabilities. She also is co-chair of the Council’sTraining Committee.

    Camilla Benbow, Ed.D., Patricia and Rodes HartDean of Education and Human Development,professor of Psychology, and co-director of theStudy of Mathematically Precocious Youth, hasbeen appointed to the Board of Directors for theWashington, D.C., think tank Education Sector.This nonprofit, nonpartisan organization iscommitted to achievingmeasurable impact ineducation.

    Blythe Corbett, Ph.D.,assistant professor ofPsychiatry, had her songlyrics “If Only” published

    Continued on page 7

    6 Fall 2012 | DISCOVERY

    TONY MAUPIN

    Tracy Beard

    New Stories of Hope video

    The Vanderbilt Kennedy Center has recentlyreleased "Stories of Hope," a video thatshowcases just a few of the families affected by the

    work of VKCinvestigators,researchers, Next Stepsambassadors, and more. To view, visit

    kc.vanderbilt.edu (see “ViewStories of HopeVideo” onhomepage).

    VANDERBILT UNIVERSITY

    Blythe Corbett, Ph.D.

  • Tuberous sclerosis complex (TSC) is a relativelycommon genetic disorder that causes benigntumors to form in different organs, including thebrain. These brain lesions can lead to seizures, autism,and cognitive or behavioral disorders. Although it isknown that mutations in two genes (TSC1 orTSC2) cause the disorder, specific abnormalities thatcause neurologic features are not clear. In Neurobiology of Disease (January 2012), KevinEss, M.D., Ph.D., and colleagues showed that micegenetically engineered to lack TSC1 in the brain dieprematurely, have increased brain size, and haveanatomical and cellular abnormalities in bothneurons and glia (the brain’s supporting cells).Additionally, activity of the “mammalian target ofrapamycin complex” (mTORC1 and mTORC2)pathways was altered in brain cells. Treatment with

    Treatment Window for Genetic Disorder BY MELISSA MARINO AND LEIGH MACMILLAN

    rapamycin (a drug commonly used to combat organrejection) prevented premature death and reversedglial abnormalities. The results suggest that apostnatal treatment window may exist for combatingsome of TSC’s neurological and cognitive effects. In Cerebral Cortex (September 2012), Ess and co-authors reported findings that support animportant role for the TSC1 gene duringinterneuron development and suggest thatinhibitory GABA interneurons may contribute toepilepsy and autism in persons with TSC.

    Kevin Ess is assistant professor of Neurology, Pediatrics,and Cell & Developmental Biology, and a VKCmember. This research was supported by the NINDS,the Tuberous Sclerosis Alliance, American EpilepsySociety/Milken Family, and VKC.

    in the 2012 Volume VI edition of Tabula Rasa,the Vanderbilt Journal of Medical Humanities.Corbett wrote the lyrics, told from the perspectiveof a child with autism longing to communicatewith his mother. The music is by Tammy Vice,singer, songwriter, and autism parentadvocate.

    Lynn Fuchs, Ph.D., and Doug Fuchs,Ph.D., Nicholas Hobbs Chairs in SpecialEducation and Human Development andprofessors of Special Education, gave the2012 Helga Eng Lecture to the Facultyof Educational Sciences at the Universityof Oslo in Norway in September. Theyaddressed “Understanding the CognitiveUnderpinnings of At-Risk Learners’Responsiveness to Intervention.”

    Jeanne Gavigan, a graduate of Next Stepsat Vanderbilt, received the Trey PointerYoung Citizens Award from the NashvilleMayor’s Advisory Committee for Peoplewith Disabilities to commend her fine work atthe Tennessee Performing Arts Center. Among thetop three awards presented, this award recognizesyoung adults who serve as role models anddemonstrate leadership. Country music superstarDarius Rucker received the Entertainer Award inrecognition of the ways he has promoted disabilityawareness in performances with the VKC’s ACMLifting Lives Music Camp. The Susan Gray Schoolreceived the Education Award.

    ACCOLADES from page 6

    Carl Johnson, Ph.D., Stevenson Chair andprofessor of Biological Sciences and MolecularPhysiology & Biophysics, has been named Presidentof the Society for Research on BiologicalRhythms, a post he will hold through 2014. The

    Society is the premier organization forchronobiology in the world.

    TRIAD educational consultant PabloJuarez, M.Ed., BCBA, is chair of aTennessee Department of MentalHealth workgroup developing anupdate for best practice guidelinesfor children and adolescents withASD. Other TRIAD members in theworkgroup include Whitney Loring,Psy.D., assistant professor of Pediatrics,and Kim Frank, TRIAD educationalconsultant.

    Roxanne Kennerly, researchcoordinator for Stress Reduction forChildren With Disabilities and Their

    Parents and a parent of a son with Down syndrome,was selected to take part in the Patient-CenteredOutcomes Research Institute’s (PCORI) firstTransforming Patient-Centered Research:Building Partnerships and Promising ModelsWorkshop in Washington, D.C. She worked with150 patients and health care advocates to developideas, provide feedback, build community, and helpPCORI generate guiding principles to ensure thatresearch is patient-centered from beginning to end.

    A study by Beth Malow, M.D., M.S., thatexamined the use of melatonin to treat sleep-onsetinsomnia in children with ASD, was featured as a “Spotlight” on the front page of the Web site of the Eunice Kennedy ShriverNational Institute of Child Health and HumanDevelopment. The feature highlighted the linkbetween sleep and health. Malow’s study foundthat supplemental melatonin improved children’ssleep and behavior and reduced stress in parents.Malow is Burry Chair in Cognitive ChildhoodDevelopment, professor of Neurology andPediatrics, and director of the Vanderbilt SleepDisorders Division.

    Zachary Warren, Ph.D., was recently selected asone of two representatives of the Society forDevelopmental and Behavioral Pediatrics in the development of autism treatment practiceguidelines with the American Academy ofNeurology and the Child Neurology Society. In addition, Warren was featured as part of anationally broadcast segment on “NBC News with Brian Williams,” in which NBC Chief

    Science CorrespondentRobert Bazell discussed newresearch examining thecorrelation between a father’sage and the likelihood ofautism in his child. Warrenis associate professor ofPediatrics and Psychiatryand TRIAD director.

    DISCOVERY | Fall 2012 7

    VANDERBILT UNIVERSITY/NEIL BRAKE

    Carl Johnson, Ph.D.

    VANDERBILT UNIVERSITY/SUSAN URMY

    Zachary Warren, Ph.D.

    COURTE

    SY OF ESS LAB

    Brain image of a child with tuberous sclerosis complex

    TONY MAUPIN

    Roxanne Kennerly

  • E lizabeth “Liz” Graves came to Vanderbilt afterworking for a brief time in the speech andlanguage department of a rural school district.Fascinated by the advantages provided to childrenwho are deaf through advances in cochlear implanttechnology, she was anxious to learn more abouthow she could combine her love of education andaudiology to improve infant and child outcomes.She eagerly embraced the interdisciplinary approachto the provision of family services emphasized inLEND training—Leadership Education inNeurodevelopmental Disabilities. “I wanted the opportunity to work with studentswho were deaf and hard of hearing in rural areas,where services can be sparse,” Graves said. “Mybackground as a deaf educator and now as anaudiologist allows me to combine both roleseffectively—especially in rural areas whereknowledge of cochlear implants is still in its infancy.” Today Graves works as a pediatric audiologist for

    LEND Prepares Leaders BY ANNE MARIE THARPE, PH.D.

    the Mama Lere Hearing School at Vanderbilt, aprogram of the Vanderbilt Bill Wilkerson Center,and she travels to several school districts as part of anoutreach program providing audiologic services for

    children in rural Middle Tennessee. Funded by the Maternal and Child HealthBureau, the LEND mission is to improve the healthof infants, children, and adolescents with disabilitiesthrough graduate education across a diverse range of

    professional disciplines. LEND training preparesstudents for leadership roles in their respectivedisciplines. There are 43 LEND programs in 37states. In 2008, the number of pediatric audiology

    trainees fundedthrough the LENDnetwork was expandedbecause of the shortageof highly qualifiedpediatric audiologists.The Vanderbilt LENDhas a PediatricAudiology sub-award.For the 2012-13

    academic year, theLEND has 20 trainees in pediatric audiology, deafeducation, developmental/behavioral pediatrics,nursing, occupational therapy, physical therapy,psychiatry, psychology, social work, and speech-language pathology, and a family trainee.

    The toddlers and preschoolers of the Susan GraySchool (SGS) are settling into their inclusiveclassrooms, which have dynamic new names likeSoaring Eagles and Rising Monarchs. With the newyear have also comechanges in leadership,the addition of graduatestudents and moremaster’s level teachers,and plans forrefurbishing space. “The School isembarking upondramatic and excitingtransformations,” saidAnn Kaiser, Ph.D.,Susan Gray Chair inEducation and HumanDevelopment andprofessor of SpecialEducation andPsychology. Kaiser andMary Louise Hemmeter,Ph.D., associateprofessor of SpecialEducation, are SGSfaculty co-directors. “Our first goal was to get the Susan GrayTeaching Fellows program up and running. Thisexciting program, funded by Rodes Hart and the

    Susan Gray School Transformation BY COURTNEY TAYLOR

    Peabody Administration, puts an early childhoodspecial education master’s student in everyclassroom. This improves teacher/student ratios andprovides excellent training for our students. Second,

    we are more thanhalfway to having amaster’s certified earlychildhood specialeducation teacher ineach classroom. That’sa huge quality change.Third, we hired anaccomplished new sitedirector, who is also aneducator, to be presentevery day providingleadership. Finally, we plan to improveour before- and after-care programs tomake the entire day a high-quality learningexperience.”The new site

    director, KierstenKinder, received her doctorate in

    Special Education in 2010 from Peabody, whereher research was focused on the professionaldevelopment and coaching of teachers.

    “Working at the Susan Gray School really is thejob of my career,” said Kinder. “I was a classroomteacher for 10 years in inclusive early childhoodclassrooms in Chicago. After focusing so heavily onresearch during my graduate studies, I realized that Ireally missed being part of a school. I love workingwith teachers and hope to create a risk-freeenvironment for them to grow professionally.” “We are thrilled that we were able to recruitKiersten,” said Hemmeter. “She is such a thoughtfulmentor for the teachers, and she loves being aroundchildren and families every day. That’s a great plus.” The new year will bring refurbishment ofclassrooms with paint, improved child-sizedbathroom fixtures, and space redesigned toaccommodate a new “art studio” and “science lab.”In addition to a new after-care program, Hemmeter,Kaiser, and Kinder will be developing newcommunity programs and extending the programsavailable to SGS families of infants and toddlersserved in collaboration with Tennessee EarlyIntervention Services. “We’re already a model for how earlychildhood inclusive education can happen well,”said Kinder. “We have a strong, dedicated staff andexcellent support through the Special EducationDepartment, the Vanderbilt Kennedy Center, andthe Peabody Dean’s Office. With so many peopleworking together to make it even better, it’s reallyan exciting time.”

    8 Fall 2012 | DISCOVERY

    SUSAN GRAY SCHOOL

    REBECCA CAIN

    Kiersten Kinder is the Susan Gray School’s new site director.

    PAM GRAU

    LEND Trainees 2012-13

  • DISCOVERY | Fall 2012 9

    ▶ Changing the Employment LandscapeVirtually every state-level indicator confirms thatrelatively few Tennesseans with significant disabilitieshave the opportunities and supports to access andmaintain competitive, integrated employment. Theemployment rate for Americans without disabilitiesis 79.7%. The employment rate for Tennesseanswith developmental disabilities is 17%. The goal isto close that gap by improving the employment rateto 44% within 5 years. Now that goal is more achievable, thanks to theVanderbilt Kennedy Center (VKC) and theTennessee Collaborative for Meaningful Workreceiving a Projects of National Significance:Partnerships in Employment Systems Change grantfrom the Administration onIntellectual and DevelopmentalDisabilities. “The Collaborative is an impressivegroup of 28 agencies and organizationsthat have been working together forover a year to improve employmentoutcomes,” said Elise McMillan, VKCUCEDD co-director. “While theVanderbilt Kennedy Center is theadministrative lead, this grant allows avaluable partnership to grow in itsstatewide efforts.” In addition to parent supportorganizations, disability nonprofits,and employment-related agencies, Statepartners include Intellectual andDevelopmental Disabilities, Education,Human Services Division ofRehabilitation Services, Labor andWorkforce Development, and the TennesseeCouncil on Developmental Disabilities and theTennessee Higher Education Commission. “Research and experience are clear,” said Erik Carter, Ph.D., associate professor of SpecialEducation and the project’s principal investigator.“Meaningful work can make a real difference in thelives of young people with intellectual and otherdevelopmental disabilities. This grant will enable usto make compelling changes in policies and practicesacross Tennessee to ensure that every youth with a significant disability has the aspirations,opportunities, and supports to access a good jobduring and after high school.” The project will focus on establishing compellingand sustainable employment partnerships;stimulating and advancing systems/policy changestatewide; raising the aspirations and capacities ofpeople with intellectual and developmentaldisabilities (IDD), their families, service systems,employers, and communities regarding competitive

    UCEDD Briefs BY COURTNEY TAYLOR

    work as the first choice; and increasing access tomeaningful work while youth with IDD are still inhigh school and to multiple pathways to futurecareers after school. For information on the Collaborative, visitwww.tennesseeworks.org.

    ▶ Reading Clinic’s New LeadershipThe Reading Clinic has begun its 2012 Fall sessionwith the new leadership of associate director NicoleDavis, Ph.D., research assistant professor ofRadiology and Radiological Sciences. The positionwas created to provide day-to-day leadership. “Nikki comes to us with a wealth of knowledgeabout child development and Vanderbilt,” said

    Laurie Cutting, Ph.D., Patricia and Rodes HartAssociate Professor of Special Education andassociate professor of Psychology, Radiology, andPediatrics. “Specializing in reading abilities anddisabilities, she has worked with me both as theassociate director of our Education and BrainSciences Research Laboratory, and she has assistedme in my role as faculty director of the ReadingClinic, providing reading consultation and tutortraining in our evidence-based readingintervention programs. Her passion, combinedwith her clinical and educational background,provides her with the knowledge necessary toensure that the Clinic will continue to grow incapabilities and services to our community.” For Davis, her work both in reading researchand in reading intervention has been a natural anddeeply personal progression. “Many individuals in my family, including mydad and older brother, have dyslexia,” said Davis.“I loved to read. I grew up thinking that reading

    was something magical. Eventually, I enteredgraduate school and enrolled in any reading-related course or training program that I couldfind. I also worked in reading-related research labs. However, I wanted to return to working

    with families. I am thrilled to contribute to the field of reading intervention in this way.”The Reading Clinic

    provides individualizedreading tutoring for childrenin grades K-8 who are behindin reading or who havedisabilities. For information,call (615) 936-5118.

    ▶ Access Nashville Expands Its ReachThe Tennessee DisabilityCoalition and Access Nashvilleare collaborating to coordinatetraining on replication ofAccess Nashville for TennesseeADA affiliates, partneragencies, and other interestedentities. The training is fundedby a grant to the Coalitionfrom the Southeast ADACenter, a project of the Burton Blatt Institute ofSyracuse University. Access Nashville is a

    VKC UCEDD project led by Carole Moore-Slater,

    Tennessee Disability Pathfinder director. Through this hands-on service learning project atVanderbilt and other local colleges, students aretrained to assess the accessibility-friendliness ofrestaurants, entertainment attractions, hotels, andtransportation services. “We are thrilled to see the interest in Access Nashville and the recognition of the power it has as a service-learning project,” saidMoore-Slater. “We have trained close to 800college students who have identified barriers that individuals with physical disabilities facewhen trying to do something that many of usmight take for granted, like eat in a restaurant. We have a saying at Access Nashville thataccessibility is good business. It’s a win-winsituation for the patrons with disabilities and the businesses widening their customer base bybeing accessible.” For information, contact [email protected].

    VANDERBILT UNIVERSITY/DANIEL DUBOIS

    DisAbility Mentoring Day, held at Vanderbilt and by other employers, involves job-shadowingand career exploration to link jobseekers with disabilities to potential employers.

    VANDERBILT UNIVERSITY

    Nicole Davis, Ph.D.

  • The Dollar General Literacy Foundationawarded a Youth Literacy grant of $50,000 tothe VKC Reading Clinic. “The Dollar General Literacy Foundation ispleased to support the literacy efforts of theVanderbilt Kennedy Center Reading Clinic,” said Rick Dreiling, Dollar General’s chairman andCEO. “The Youth Literacy grants are awardedannually at the start of the school year so that thefunds are in place to have an impact on readingeducation and support.” In August, the Dollar General LiteracyFoundation awarded grants totaling more than $2 million to 564 non-profit organizations,community groups, schools, and librariesthroughout the United States. It is estimated thatapproximately 315,000 youth will be served as aresult of these grants. Since its founding, Dollar General has been

    committed to supporting literacy andeducation. To further this support, the DollarGeneral Literacy Foundation was established in1993 to improve the functional literacy ofadults and families by providing grants tononprofit organizations dedicated to theadvancement of literacy.For more information about the Dollar

    General Literacy Foundation or for a completelist of grant recipients, visit www.dgliteracy.org.The VKC Reading Clinic provides intensive,

    individualized, one-to-one tutoring usingassessment and instructional methods provenby research to promote reading. It servesstudents in grades K-8 who are behind inreading or have learning disabilities,developmental disabilities, or intellectualdisabilities. For information, contact (615)936-5118.

    10 Fall 2012 | DISCOVERY

    Dollar General Youth Literacy Grant BY ELIZABETH TURNER

    A t age 19, Mary Layne Van Cleave beganstudent teaching in a high school mathclassroom. She had studied for 3 years, with amajor in math and a minor in education, inthe teaching program at Middle TennesseeState University. She was eager to get into theclassroom and gain teaching experience. Itturns out she hated it. “It was the worst experience of my life,”said Van Cleave. “I realized quickly that I wasnot going to be able to do that for the rest ofmy life. I didn’t have a clue what I wanted todo. I stayed in school for another year and gota master’s degree in math. Right beforegraduation, the head of the department calledto tell me there was a program at Vanderbilt inBiostatistics looking for students and he thought Imight be interested. I really didn’t know what else Iwas going to do so—I was!” Van Cleave went on to receive her secondmaster’s degree in Biostatistics. After graduation, shebegan to work for the State Department of Healthin the Office of Health Statistics, and eventually wasasked to build a data program for the TennesseeHospital Association. Five years ago, she became theexecutive vice president and chief operating officer ofthe Hospital Association. She beams when she talksabout her work. Van Cleave is married and has two children. Shemet her husband John while at Vanderbilt. He was

    Realizing Potential: Mary Layne Van Cleave BY COURTNEY TAYLOR

    studying law and is now an attorney with WatkinsMcNeilly. Their son Andrew is 24 and theirdaughter Lindsey is 23. Lindsey graduated fromSouthern Methodist University a year ago and nowworks for an insurance company. Andrew graduatedin 2011 with the first cohort of students enrolled inNext Steps at Vanderbilt, a 2-year certificateprogram for students with intellectual disabilities. “Next Steps wasn’t the first contact we had withthe Vanderbilt Kennedy Center,” said Van Cleave.“Andrew always had trouble reading, so we enrolledhim at the Reading Clinic when he was about 10years old. I don’t know what they did or how theydid it, but it clicked and he started to read. At thatpoint, the program was only for kids up to age 12,

    but I begged them to continue workingwith him and they let him stay until he was20. He worked so hard and learned somuch. I feel like the Reading Clinicprobably gets much of the credit for Andrewgraduating with a regular diploma and forwhat he’s been able to do since then.”Van Cleave’s introduction to the VKC

    Leadership Council was 2 years ago, whenshe was invited to speak about thetransformations she had seen in Andrewduring his participation in Next Steps atVanderbilt. Soon after she delivered thatpassionate speech, she was invited to jointhe Council. She also chairs the Next Steps

    Advisory Board and considers it a personal goal toraise awareness about this postsecondary program. “More people need to know the invaluableresource we have in the Kennedy Center,” said VanCleave. “I especially would like to see moreawareness of the Next Steps program. Andrewblossomed in that program. I watched his attitudesabout himself change. I watched him go from beingpainfully introverted to holding his own in a groupof college kids. I watched him begin to take pride inthe way he dresses, travel without me on out-of-statespring break trips, and begin a job that he reallyenjoys. Next Steps changed his whole life and hiswhole potential for a future. I have a great love forthe Kennedy Center.”

    COURTE

    SY OF TH

    E VAN CLE

    AVE FAMILY

    Lindsey, Mary Layne, John, and Andrew Van Cleave

    VANDERBILT UNIVERSITY/STE

    VE GREEN

    The Amazing Race to Reading was a 2012 Summer programof the VKC Reading Clinic, which offers sessions year-round.

  • Donna Eskind, VKC Leadership CouncilChair, and Shirley Speyer, Nicholas HobbsSociety Chair, welcomed members to the FallLeadership Council Meeting in September.

    Ambassadors At Large—Our Leadership Council

    VKC director Elisabeth Dykens, Ph.D.,premiered the video Stories of Hope (see page 6). “Gene-Environment Interaction,Neuroimmune Changes, and Autism” was the

    featured research topic presented by VKC associatedirector Karoly Mirnics, M.D., Ph.D., James G.Blakemore Chair in Psychiatry. Adam Michael, VKC director of development,highlighted the importance of philanthropicsupport for VKC expertise. “Philanthropicinvestments in the Kennedy Center accelerate thepace of research and help train leaders in autismand other developmental disabilities,” Michaelsaid. “Endowed support ensures that fundingsources are available over the long term—not onlyto benefit children and adults with disabilitiestoday but to benefit those across the nation fordecades to come.” For information, see Giving atkc.vanderbilt.edu.

    DISCOVERY | Fall 2012 11

    L eadership by individuals with disabilities andfamily members is a hallmark of the nationalnetwork of University Centers for Excellence onDevelopmental Disabilities (UCEDDs) and theirfunding agency, the Administration on Intellectualand Developmental Disabilities. Such leadershiphelps ensure that UCEDDs are meeting the real,most important concerns within their states. TheVKC UCEDD has an energetic and committedCommunity Advisory Council (CAC). The CACadvises the UCEDD leadership and is a fullpartner in planning, implementing, and evaluatingactivities. At its September meeting, the CACwelcomed several new members for 3-year terms. Ron Butler is the parent of an adult son with anintellectual disability and cerebral palsy. Butler is apast president of The Arc Tennessee, where he is alsoa board member, and he is on the board of Mid-TNSupported Living, Inc. He is retired from FordMotor Company. Belinda Martinez has two children, one withautism. A parent volunteer, she works with theSpanish-speaking community of Montgomery

    Community Leadership—New CAC Members BY ELIZABETH TURNER

    County to provide advocacy support, resources,and information for children, teens, and adultswith autism and other disabilities. Christine Sartain is a parent advocate and wasthe 2011-12 Vanderbilt LEND Family Trainee.Her professional background includes teaching,organizing, and policy advocacy. Most recently, shehas been involved in the Disability Coalition onEducation, the VKC Volunteer Advocacy Project,and the Special Education Advocacy Center. Shehas a daughter, Lake, who has Down syndromeand attends the Susan Gray School. Sartain isCAC Vice Chair. Erin Thompson facilitates a family supportgroup for Tennessee Voices for Children and is thefounder of the Maryville Autism Coalition. Shehas served on the Board of the Autism Society ofEast Tennessee. When she is not spending timewith her three children and husband, Thompson isdevoted to helping children and families who havespecial needs get connected in their community.She has helped form a strong faith-based resourcefor families to help them feel comfortable in a

    church setting with their children. Karen Weigle, Ph.D., is a clinical psychologistwith 20 years of experience working with peoplewith autism and other developmental disabilitiesand their families. She is co-director of PsychAssess, a comprehensive, multispecialty evaluationclinic, and is a technical assistant and trainer forthe Center for START Services at University ofNew Hampshire, a national program designed todevelop local crisis prevention and interventionservices for persons with intellectual anddevelopmental disabilities and mental healthconcerns. Erin Richardson has been a disability advocatesince 2001, when her middle son was diagnosedwith a chromosomal abnormality. Formerly apracticing attorney, she has been an educationaladvocate for Middle Tennessee families since 2005.In 2011, she started the Special Education AdvocacyCenter, dedicated to advocating for families andstudents with disabilities in education settings.Richardson has served since 2008 on the Mayor'sAdvisory Council for Special Education.

    Pictured left to right: Ron Butler, Belinda Martinez, Christine Sartain, Erin Thompson, Karen Weigle, Ph.D., and Erin Richardson

    ELIZA

    BETH

    TURNER

    Donna Eskind and Shirley Speyer

    KYLIE BECK

    Elisabeth Dykens and Annette Eskind

  • NON-PROFIT ORG.U.S. POSTAGE

    PAIDNASHVILLE, TNPERMIT NO. 1460

    VANDERBILT UNIVERSITYVanderbilt Kennedy CenterPMB 40230 Appleton PlaceNashville, TN 37203-5721

    RETURN SERVICE REQUESTEDLeadership Council of Vanderbilt Kennedy Center

    Mrs. Donna G. Eskind, ChairMrs. Cathy S. Brown, Past ChairMrs. Annette Eskind, Past ChairMrs. Barbara Gregg Phillips, Past Chair

    Mrs. Honey AlexanderMs. Sissy AllenMrs. Melinda BalserMrs. Jean Ann BankerMrs. Madge BassMrs. Melissa BeasleyMrs. Ann BernardMrs. Barbara T. BovenderMrs. Linda BrooksMs. Mary L. CarlsonMrs. Elizabeth Ginsberg Dreifuss

    Mrs. Ann EadenMr. Glenn FunkMrs. Charlotte GaviganMrs. Bernice GordonMrs. Carol HendersonMr. Robert W. Henderson IIMs. Lucile HouseworthMs. Bethany JacksonMrs. Gail Gordon JacobsMr. Robert E.Landreth

    Mr. Chris and Mrs. Rebecca Link

    Mrs. Lorie Hoppers LytleMrs. Jack C. MasseyDr. BethAnn McLaughlinMrs. Thomas E. Nesbitt, Jr.Mrs. Pat PattenMs. Andrea SandersThe Honorable Andrew Shookhoff

    Mrs. Shirley F. SpeyerMrs. Sue SpickardMrs. Julie Carell StadlerMrs. Mary Layne Van Cleave

    Ex-Officio MembersDr. Elisabeth DykensMrs. Elise McMillanMr. Adam MichaelDr. Karoly MirnicsMs. Linde PflaumDr. Jan RosemergyMr. Tim Stafford

    Find Us on Facebook

    Find us on Facebook for frequentupdates and discussions on news,events, and research going on at the Center.tinyurl.com/vkcfacebook

    Giving kc.vanderbilt.edu/giving

    Alyne Queener Massey—Remembering a FriendVanderbilt Kennedy Center Leadership Councilmember and our good friend Alyne QueenerMassey passed away on September 11, 2012. Shewas a generous leader and philanthropist who hada deep devotion to Vanderbilt and its mission. In addition to serving on the Vanderbilt KennedyCenter Leadership Council, she served on the Vanderbilt Board of Trust and on the Board of theMonroe Carell Jr. Children’s Hospital at Vanderbilt.She was a founding member of the VanderbiltHeart Advisory Council. She will be missed greatly.

    Sign Up for Research News

    Subscribe to Research News @ Vander-bilt to receive weekly coverage of the latestresearch from across Vanderbilt Universityand Medical Center.

    Discovery is a quarterly publication of the Vanderbilt KennedyCenter designed to educate our friends and the community, fromNashville to the nation. The Center is a Eunice Kennedy ShriverIntellectual and Developmental Disabilities Research Centerfunded by the Eunice Kennedy ShriverNational Institute of ChildHealth and Human Development, and a University Center forExcellence in Developmental Disabilities (UCEDD) funded bythe Administration on Intellectual and Developmental Disabili-ties (AIDD). Discovery is supported in part by Grant No. HD15052 from EKS NICHD, AIDD Grant #90DD0595, andLEND Training Grant No. T73MC00050 MCHB/HRSA.

    kc.vanderbilt.edu(615) 322-8240 (1-866) 936-VUKC [8852]

    Elisabeth Dykens, Ph.D., Kennedy Center Director; Karoly Mirnics, M.D., Ph.D., Associate Director; Jan Rosemergy, Ph.D., Deputy Director and Director of Communications; Tim Stafford, Director of Operations

    UCEDD: Elisabeth Dykens, Ph.D., Co-Director; Elise McMillan, J.D., Co-Director; Services; Terri Urbano,Ph.D., M.P.H., R.N., Training; Robert Hodapp, Ph.D., Research; Jan Rosemergy, Ph.D., Dissemination

    LEND: Terri Urbano, Ph.D., M.P.H., R.N., Director; Tyler Reimschisel, M.D., Associate Director

    TRIAD: Zachary Warren, Ph.D., Director

    Discovery: Editor: Jan Rosemergy, Ph.D., Graphic Designer: Kylie Beck, Photo Editor: Amy Pottier

    Vanderbilt University is committed to principles of Equal Opportunity and Affirmative Action. ©2012 VanderbiltKennedy Center, Vanderbilt University

    TOMMY LAWSON

  • NOVEMBER 26*Special LectureSocial Attention and the CognitivePhenotype of Autism SpectrumDisordersPeter Mundy, Ph.D.Director of Educational Research,MIND Institute; Professor and LisaCapps Chair for Neurodevelop-mental Disorders and Education,University of California DavisCo-sponsor: PostdoctoralIntervention Research TrainingProgram in Special EducationMonday 4:10 p.m.

    DECEMBER 5*Developmental Disabilities Grand RoundsA Potential Role for the Thalamus inDevelopmental Disorders InvolvingInattention and Neglect **Vivien Casagrande, Ph.D.Professor of Cell & DevelopmentalBiology and Ophthalmology & Visual Sciences. Register at:kc.vanderbilt.edu/registrationWednesday 12 p.m.

    DECEMBER 7*Community Advisory Council MeetingInfo (615) 936-8852Friday 9 a.m.-2 p.m.

    DECEMBER 8*TRIAD Families First WorkshopsSafety SaturdayRegister at:kc.vanderbilt.edu/registrationInfo (615) 322-6027 [email protected] 9 a.m.-12 p.m.See website for Spring workshops

    DECEMBER 12-14*Autism Diagnostic ObservationSchedule (ADOS-2) ResearchTrainingTRIAD-led course for psychologists,pediatricians, behavioral specialists,SLPs, and research assistants whohave completed ADOS-2 clinicaltraining and regularly assessindividuals with ASD. Fee $1500/person. Info (615) 322-6533 [email protected]

    DECEMBER 13*Lectures on Development andDevelopmental DisabilitiesOrder and Disorder in the Develop-ing Emotional Brain: Prospects forCultivating Healthy MindsRichard J. Davidson, Ph.D.Professor of Psychology andPsychiatry, University of WisconsinThursday 4:10 p.m.

    JANUARY 9*Developmental Disabilities Grand RoundsHealth Disparities and the Stress Hypothesis**R. Jay Turner, Ph.D.Professor of Sociology andPsychiatry. Register at:kc.vanderbilt.edu/registration Wednesday 12 p.m.

    JANUARY 15VKC Science DayVU Student Life Center, 310 25thAve. South, Nashville. Register at:kc.vanderbilt.edu/registrationTuesday 11 a.m.-4 p.m.

    JANUARY 19*SibSaturdayFor siblings 5-7 and 8-13 years whohave a brother/sister with a disability

    Games, friends, conversation$10/child, $20 max/family(assistance available). Register at:kc.vanderbilt.edu/registration(required in advance)Info (615) 936-8852 [email protected]

    JANUARY 21Spring 2013 Volunteer Advocacy Program12-week training program coveringspecial education law and advocacystrategies. Registration andapplication materials due by Jan. 15.$30 for materials. Register at:kc.vanderbilt.edu/registrationInfo (615) 414-4579 [email protected] 5-8 p.m. (6-9 p.m. East TNsites)

    JANUARY 23*You and Your Legislators:Disability Advocacy for 2013TN issues, federal issues,communicating with legislatorsCarrie Guiden, Arc TN; CarolWestlake, TN Disability Coalition;David Mills, VU Community,Neighborhood, & GovernmentRelations. Lunch provided. Registerat: kc.vanderbilt.edu/registrationWednesday 11:30 a.m.-1 p.m

    JANUARY 24*Lectures on Development &Developmental DisabilitiesMartin Luther King, Jr.Commemorative LectureCreating Inclusive Communities–One Dream At a Time Lucille Zeph, Ed.D.Director of Center for Inclusion &Disabilities, University of MaineThursday 4:10 p.m.

    JANUARY 30*Statistics and Methodology Core Training SeminarMultilevel SEM with Applications to MediationKristopher Preacher, Ph.D.Assistant Professor of Psychology & Human Development. Register at:kc.vanderbilt.edu/registrationWednesday 12:30 p.m.

    Unless otherwise noted,events are free and open tothe public. Events are subjectto change. Please check thewebsite calendar atkc.vanderbilt.edu or contact(615) 322-8240 or toll-free (1-866) 936-VUKC [8852].

    Please keep this calendarand check the EventCalendar on the VKC website for updates. If youwish to receive eventannouncements by email,send your email address [email protected].

    For disability-related training and other eventsstatewide and nationally,see the searchable PathfinderDisability Calendarwww.familyp athfinder.org.

    *Event will be held in Room241 Vanderbilt KennedyCenter/One Magnolia CircleBldg (110 Magnolia Circle).

    **VKC Member or Investigator

    KYLIE BECK

    Susan Gray School children are mini-Vandy Commodores! The School received the2012 Education Award of the Mayor’s Advisory Committee for People With Disabilities.

    DISCOVERY | Fall 2012

  • FEBRUARY 6*Developmental Disabilities Grand RoundsThe Control and Limitations ofAttention in the Human Brain**René Marois, Ph.D.Associate Professor of Psychologyand Radiology & RadiologicalSciences. Register at:kc.vanderbilt.edu/registrationWednesday 12 p.m.

    FEBRUARY 7*Lectures on Development &Developmental DisabilitiesEmotion and Survival: What's theRelation?Joseph LeDoux, Ph.D.Professor of Neural Science &Psychology, New York UniversityThursday 4:10 p.m.

    FEBRUARY 11*Lectures on Development &Developmental DisabilitiesEngaging Autism: DevelopmentalImplications for InterventionsConnie Kasari, Ph.D.Professor of Psychological StudiesUniversity of California Los AngelesMonday 4:10 p.m.

    FEBRUARY 20Neuroscience Graduate Program Seminar SeriesTBASusan G. Amara, Ph.D.Thomas Detre Professor and Chair of Neurobiology, University ofPittsburgh; Co-Director, Center for

    Neuroscience. Co-sponsorVanderbilt Brain InstituteRoom 1220 MRB III Lecture HallWednesday 4:10 p.m.

    FEBRUARY 27*Intervention 2.0 Lecture SeriesNew Approaches to DevelopingReading and Math Programs forStudents with Serious LearningProblems**Doug Fuchs, Ph.D., NicholasHobbs Chair in Special Education & Human Development, Professor of Special Education; **Lynn Fuchs,Ph.D., Nicholas Hobbs Chair in Special Education & HumanDevelopment, Professor of Special Education; **DonaldCompton, Ph.D., Professor andChair of Special EducationWednesday 4:10 p.m.

    MARCH 8*Community Advisory Council MeetingInfo (615) 936-8852Friday 9 a.m.-2 p.m.

    MARCH 13*Developmental Disabilities Grand RoundsRewiring the Brain in Children WithDisabilities: A MultidisciplinaryApproach**Nathalie Maitre, M.D., Ph.D.Assistant Professor of Pediatrics,Division of Neonatology. Register at:kc.vanderbilt.edu/registrationWednesday 12 p.m.

    MARCH 20*Intervention 2.0 Lecture SeriesIncluding Students With SevereDisabilities in Secondary Schools:Peer Support Strategies to FosterRelationships and Learning**Erik Carter, Ph.D., AssociateProfessor of Special EducationWednesday 4:10 p.m.

    MARCH 28*Lectures on Development &Developmental DisabilitiesBrainstorm Lecture, TBAHelen Neville, Ph.D.Professor of Psychology, Institute ofNeuroscience, University of OregonThursday 4:10 p.m.

    ARTS AND DISABILITIESEXHIBITMonday-Friday 7:30 a.m.-5:30 p.m.Lobby VKC/One Magnolia CircleInfo (615) 936-8852• SEPT. 1 THROUGH DEC. 31Creative Expressions XVIIIJointly sponsored by the VKCand the Nashville Mayor’sAdvisory Committee for Peoplewith Disabilities, this annualexhibit features work by artistswith a wide range ofabilities/disabilities and ages.• JAN. THROUGH MARCHArt created by students in theVKC Reading Clinic Summer2012 programs.

    AUTISM TRAININGS FORK-12 SCHOOL PERSONNELWith the Tennessee Department of Education, TRIAD offers free autism-specific workshops for school personnel, parents, and thecommunity in locations across thestate. Dates/locations TBA; seekc.vanderbilt.edu/TRIAD/events.

    LEARNING ASSESSMENTCLINICMultidisciplinary academic assess-ments of students, 5-25 years, to identify learning strengths andchallenges and to recommendstrategies to improve academiclearning. Info (615) 936-5118

    NEXT STEPS ATVANDERBILTA 2-year certification postsecondaryeducation program for students with intellectual disabilities providingindividualized Programs of Study in education, social skills, andvocational training. Open Houses:• JAN. 18• MARCH 15• MAY 17

    Info (615) [email protected]

    READING CLINICAssessment and tutoring forstudents through middle schoolInfo (615) 936-5118 [email protected]

    TAKE PART IN RESEARCH VKC Research StudiesFor children and adults, with andwithout disabilitiesLynnette Henderson (615) 936-0448Toll-free (1-866) 936-VUKC [8852]• Research Family Partnerskc.vanderbilt.edu/rfpRegister and be notified ofresearch studies• StudyFinderkc.vanderbilt.edu/studyfinderView lists of studies, criteria, and contact information• See also VUMC Clinical Trialswww.vanderbilthealth.com/clinicaltrials

    TENNESSEE DISABILITYPATHFINDER MULTI-CULTURAL OUTREACHHelpline; Web site with SearchableDatabase, Calendar, and ResourceLibrary; Print Resourceswww.familypathfinder.orgEnglish (615) 322-8529Español (615) 479-9568 Toll-free (1-800) 640-INFO [4636][email protected] of VKC UCEDD and TNCouncil on DevelopmentalDisabilities

    Fall 2012 | DISCOVERY

    ELIZA

    BETH

    TURNER

    VKC autism clinical, educational, and research activities were the focus of a studytour by disability professionals from CREAHI Champagne-Ardenne, a regional disability center in France.