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1 DOUBLE ISSUE The Shriver Center spotlight University of Massachusetts Medical School/Eunice Kennedy Shriver Center VOLUME 6/ISSUE 2 SPRING 2014 Shriver Center Online Courses Examine Disabilities from a Variety of Perspectives Online distance learning is increasingly becoming an accepted educational practice as technological advances provide easier and more accessible solutions for a wide variety of learners and their needs. For many students, this may mean receiving an education without ever setting foot inside a traditional classroom. This remarkable trend shows no signs of slowing down. Faculty and staff at the Shriver Center have tapped into this ever-changing educational landscape, while remaining committed to ensuring that disability-related content and courses are available to students, professionals, family members, and of course, individuals with disabilities themselves. Led by Charles D. Hamad, PhD, Interim Executive Director of the Shriver Center and UCEDD Co-Director, a wave of new online courses and modules are either currently available or under development. They represent the latest commitment to a culture of instructional innovation that has grown stronger with each passing year. Reflecting on the origin of the Shriver Center s online learning program development, Hamad explained, I remember almost the time of day and day of the week when I was talking to a woman named Joan Straumanis about potential online learning grants. She was a program officer at the U.S. Department of Education s Learning Anytime Anywhere Partnership (LAAP) program, which is also a part of the Fund for the Improvement of Post- Secondary Education (FIPSE). I had seen their grant guidance about funding opportunities for online learning, but wanted more information on their specific funding interests. During that conversation, Hamad learned that the LAAP program wanted to look beyond demonstration projects and instead focus on ideas that could be self-sustaining while also generating national impact. Hamad responded by drawing on a highly-publicized study published in 1987 by noted researcher Dr. O. Ivar Lovaas, recommending early, intensive, behavioral intervention (EIBI) of hours per week for children diagnosed with autism. After the study came out, many staff and providers were not trained to implement EIBI with young children with autism. Regions of the country had pockets of trained people, but there was no widely accessible place where professionals could go if they wanted to learn. This was in the 1990 s and early 2000 s. So, my idea on the phone with Joan Straumanis was to write a grant that would take this potentially significant idea for behavior change and develop it in a way that would make it accessible and usable to everyone, he elaborated. The resulting grant funding laid the foundation for what is now the Behavioral Intervention in Autism (BIA) online program, available through UMass Lowell s UMass Online division. The six-course program sees about 1,100 enrollments a year, is funded entirely by Christophe Gerard, PhD, Director of Disability Technology Development Susan: Photo Caption: Pending selection of photo ready on 3/19 Charles D. Hamad, PhD student tuition fees, and won the prestigious 2008 Sloane C Award for Best Online Learning Program in the nation. The early stages of the BIA project also reunited Dr. Hamad with current Shriver Center Adjunct Faculty member Rick Fleming, PhD, who has previously served as the Shriver Center s Director of Instructional Design, and also is a longtime advocate of online learning. They first met decades earlier, while holding positions at the nearby Fernald Center School. Dr. Fleming has been instrumental to the success of our online learning program with his continued and dedicated involvement, Hamad said. He also estimated that well over 50 online courses have been developed for parents and professionals over the years by Shriver Center faculty, although many are no longer active. The list of course topics included everything from newborn hearing screenings to service coordination to managing spasticity. Some of continued on page 2 IN THIS ISSUE Online Courses Examine Disabilities... 1 Theme: Online Distance Learning Curriculum... 2 Discovering Behavioral Intervention (DBI)... 3 Developing Tools to Help Nonverbal Children with ASD.4 UDiscovering: Shriver Center Online Products... 5 Emergency Preparedness Online Simulation... 6 ABA Course Teaches Paraprofessionals... 7 CANS Online Training... 8 Perspective: Behind the Lens Disability Rights Online Course Snapshot: Departmental Updates Illuminati:Charles D. Hamad, PhD Shriver Center LEND Fellows Focus on Faculty William McIlvane Promotion Healthy Weight Research Network Team Shriver Recognized at Cancer Fundraiser Shriver Center Moves to Two New Locations Eunice Kennedy Shriver Center University of Massachusetts Medical School 465 Medford Street Suite 500 Charlestown, MA

2 training Disseminating Disability-Related Content and Courses Shriver Center Online Courses continued from page 1 Theme: Online Distance Learning Curriculum for Disability-Related Content The Shriver Center mission calls in part for advancement of local, national, and international efforts to improve the quality of life for individuals with intellectual and developmental disabilities (IDD) and their families. A key component involves IDDrelevant programs of technology and information dissemination, education and training, among other priority areas. In response, our online distance learning program is perfectly suited to meeting these goals given its global reach, access to and impact on education and training, and its clear disability focus. With our current and growing program of online disability-related courses, we are at the threshold of using these emerging technologies in exciting and innovative ways that will ultimately benefit people with disabilities and their families. Whether the topic is behavioral intervention, special needs dentistry, emergency preparedness, disability law, clinical assessment, or new topics yet to come, the possibilities are endless. The audiences for online learning are diverse as well. Parents and caregivers, paraprofessionals, first responders, and behavior analysts represent just a few of the audiences currently benefitting from our curricula. The future holds promise for many more. We hope you enjoy reading about this emerging field of distance education at the Shriver Center.. the courses were designed for low enrollment, because the subject matter would likely attract a relatively restricted audience, like managing spasticity, for example. It s wonderful if families or professionals can use and benefit from our content, but the information must also stay updated and current to remain useful. To me, that is one of the challenges of distance learning, Hamad continued. Hamad traced his own interest in distance learning back to the emergence of Internet technology. In the late 90 s, Internet use was ramping up, and everyone began to see that the information available could consist of more than simply text. My primary interest in distance learning grew out of technology advancing to the point where it became feasible to include photos, videos, hot links, and other ways people could manipulate and respond to information. So it was a marriage of technology with an interest of instructional design and learning, he explained. Despite these features, Hamad is quick to point out that online learning isn t just art. You have to make sure the foundation of your idea has a solid, factual basis. It s not enough anymore to just create an online course. It has to be unique and constructed in a way that will reach people and be useful to them, he elaborated. Technological advancements only succeed if they are accessible to the widest possible audience, which is where John Rochford, Director of the Shriver Center s INDEX technology group, comes in. INDEX helps ensure that all online courses can be accessed by individuals with a variety of disabilities. Historically, the most disenfranchised group in terms of both Internet use and online courses is people who are blind or visually impaired, since so much of the Internet is vision-based, Rochford explains. But other disabilities can lead to limitations using the Internet as well. For example, individuals with physical disabilities may be unable to use a keyboard, requiring them to use assistive Did you know? The 2012 Survey of Online Learning conducted by the Babson Survey Research Group revealed the number of students taking at least one online course has now surpassed 6.7 million. 1 According to a 2010 meta study: Students who took all or part of their class online performed better, on average, than those taking the same course through traditional face-to-face instruction. 2 71% of leaders of for-profit colleges and universities report that their institutions offer classes online, and more than half (54%) say these classes offer the same value as classes taken in person. 89% of fouryear public colleges and universities offer online classes, compared to 60% of four-year private schools. 3 50% of college presidents predict that 10 years from now most of their students will take classes online. than those taking the same course through traditional face-to-face instruction. 4 technology such as a sip and puff device or a head stick. Likewise, individuals who are deaf or who have a hearing loss need closed captioning or a sign-language inset for web videos. Since their inception, all online courses offered at the Shriver Center have been made as accessible as possible given the technology and the budgets at the time they were developed. Janet Twyman, PhD, an Associate Professor of Pediatrics at UMMS and instructional design expert, elaborated on the significance of such accessibility. Much of what makes the Internet attractive to users is the level of personalization they can bring to it. The Internet can reveal as much or as little about ourselves as we choose. In order for distance learning and online education to grow and flourish, that level of personalization must remain open to everyone, regardless of disability, Twyman said. When asked what makes the Shriver Center s use of online distance learning unique, Dr. Hamad emphasized the desire to look beyond traditional methods. Innovation is the key. That may mean developing an online simulation to increase emergency preparedness knowledge among first responders, recording parent interviews about the experience of raising a child diagnosed with autism and inserting those interviews into an online course, or something else entirely. Whatever the method and subject matter, it is very important that the Shriver Center continues offering new and unique distance learning opportunities to individuals with disabilities and their families, he concluded. 1 Changing Course: Ten Years of Tracking Online Education in the United States, Babson Survey Research Group & Sloan Consortium, Evidence-Based Practices in Online Learning: A Meta-Analysis and Review of Online Learning Studies, United States Department of Education, Pew Research Center, Pew Research Center,

3 The Internet can reveal as much or as little about ourselves as we choose. In order for distance learning and online education to grow and flourish, that level of personalization must remain open to everyone, regardless of disability. DBI Online Course Offers Parents Practical, Applicable Education about ABA When a child is diagnosed with autism spectrum disorder (ASD), parents or guardians often assume several new roles to help their child progress. To address children s challenging behaviors, they must consider various intervention strategies which often require working with a variety of professionals. They must also learn how to advocate for their child s unmet needs. These roles add to the significant and often stressful day-to-day responsibilities of parenting a child diagnosed with ASD. To help address and alleviate parents concerns, Shriver Center faculty and staff developed a 10-module online distance learning course entitled Discovering Behavioral Intervention (DBI): A Parent s Interactive Guide to Applied Behavioral Analysis. Targeted to parents, the course describes the evidence-based practice of applied behavioral analysis (ABA), a highly effective branch of psychology that offers a range of strategies based on positive reinforcement to improve the lives of individuals with ASD. ABA helps families understand why some children engage in undesirable or challenging behaviors and how to decrease these behaviors by teaching new skills. DBI takes a two-pronged approach, combining knowledge from professional experts with a mixture of embedded videos, interactive scenarios, and videotaped interviews from parents. Richard Fleming, PhD, principal investigator for DBI, explained the team s reasoning behind implementing this dual approach. A new diagnosis of autism can be so overwhelming, he elaborated. From the start, we wanted to truly engage parents DBI Course Modules 1 Introduction to Discovering Behavioral Intervention 2 Basics of ABA 3 Building Skills with ABA: Part I 4 Building Skills with ABA: Part II 5 Assessing Behavior 6 Interventions for Challenging Behaviors 7 Collecting and Using ABA Data 8 Partnering with ABA Professionals 9 Advocating for ABA Services 10 Behavioral Interventions and the IEP: What Parents Need To Know as they took the course; we wanted them to act on what they were learning, and to be challenged to really understand their child at a deeper level. Fleming also acknowledged that this initially led to some difficulties early on in conceptualization. We struggled with the process of taking technical scientific language and making it accessible for parents, but by doing so, we hope to give them the language and concepts so they can converse with professionals successfully and be able to explain their children s behavior in a precise and accurate way Fleming said. Elaine Gabovitch, MPA, the parent of a son with ASD, family faculty, and a developer on the project, wholeheartedly agreed with Fleming s assessment. DBI s content had to be more than just training ABA techniques; it had to educate parents on how to incorporate it into daily life. We did this in part by presenting interviews with families whose children had benefited from ABA throughout the course to establish authenticity for families through their stories. Dr. Fleming has an instinctive understanding of the value of the parent voice, knowing and respecting the type of nuanced insights family members can have about what makes an intervention like ABA work so well, she explained. Another team member, Melissa Maslin, M.Ed., found the project particularly influential to her own efforts. DBI marked my first experience as a project coordinator which allowed me to experience all sides of the work involved; the value of including parents voices within the courses themselves, for example, and the importance of combining professional and parent perspectives among the project team members to achieve the best overall result. I can t imagine doing similar work in the future without using this process, she elaborated. Since DBI is primarily geared toward families dealing with a new diagnosis of autism, many discussions during development centered on the balance between empowering parents on their journey while also providing a realistic grounding of pitfalls they might experience along the way. This sentiment was particularly an issue when discussing barriers often encountered when seeking treatment options (e.g., disruption to family life, cost, availability, type, and expected outcomes, among others). People often say that ABA is just common sense, Fleming explained. But it s not, and DBI Team Members Richard Fleming, PhD: Principal Investigator & project director Maura Buckley, MPA: Current product manager & content developer Elaine Gabovitch, MPA: Interviewer, content developer, & editor Melissa Maslin, MEd: Project coordinator & editor Elise Stokes-Cooke, MS, BCBA: Content developer Project Consultants: Noah Dziobecki: Flash programming consultant Cheryl Gray: Instructional designer Malcolm Johnstone: Design consultant Pat Levasseur: Groden School liaison Tere Ramos-Dunne, MS: Content developer/ consultant Paul Roselli: Filmmaker Sarah Rule, PhD: Online education specialist in behavioral intervention Richard Serna, PhD: Interactive content & video designer in fact, ABA can often feel counter-intuitive. For example, scolding a child can serve as a positive reinforcer that actually makes problematic behavior worse. We wanted people to really understand how behavior is learned by a child, and how what you say and do in response to a child s behavior can have profoundly good or bad effects. Understanding ABA at that level is incredibly empowering for a parent. DBI is currently available via online subscription from the Commonwealth Medicine UDiscovering website. UDiscovering offers a new series of online training tools and services to help families and professionals touched by or working in the fields of autism and other intellectual and developmental disabilities. For pricing and ordering information regarding DBI, please visit: discovering-behavioral-intervention/pricing. 3

4 training Disseminating Disability-Related Content and Courses UMMS researchers developing tools to help nonverbal children on the autism spectrum communicate By Jennifer Rosinski and Bryan Goodchild (Reprinted with permission of the UMass Medical School Office of Communications) A team of UMass Medical School researchers is developing tools for the classroom and clinic to help teach communication skills to nonverbal children on the autism spectrum who struggle to understand that pictures relate to real-life objects or events. Funded by the National Institutes of Health, the research is being led by Commonwealth Medicine Director of Academic Development William McIlvane, PhD. Researchers are working with students at public and private schools across Massachusetts who have been diagnosed with Autism Spectrum Disorders. I think of myself and my colleagues as toolmakers, said Dr. McIlvane, also professor of psychiatry at UMMS, whose team is in the third year of a four-year project. We don t want to give the teachers, clinicians, speech language pathologists very complicated instructional procedures. We want to give them something they can buy over the counter that won t cost very much their education and clinical budgets can afford it and is evidence based instructional technology at the highest level. Autism Speaks estimates that 25 percent of individuals on the autism spectrum are initially nonverbal (perhaps 500,000 in the United States, and many millions worldwide). While picture-aided communication can help many such individuals learn to communicate effectively, a substantial number have great difficulty learning to relate pictures with items that they represent. We re using some fairly high-powered computer hardware and software, which is affordable now for the classroom, to try to resolve that problem, McIlvane said. Using currently available software, for example, one can use apparent rotation of pictured items on a two-dimensional space (the screen of a tablet or smartphone) to simulate the three dimensions of corresponding objects. McIlvane believes that teaching procedures of this type may help children break through the three-dimensional to two-dimensional barrier. To watch the video that accompanied this story, visit Picture-aided communication software tools are under development by Dr. McIlvane and his colleagues for use in schools and clinics in the future. spotlight on Current and Future Online Courses from the Shriver Center 4 Behavioral Intervention in Autism (C. Hamad & R. Fleming, Directors) This six-module course is currently available through the online division of UMass Lowell, UMASS Online. All six modules are approved by the Behavior Analysis Certification Board, and can count towards certification as a board certified behavior analyst (BCBA). Completion of four courses confers a graduate certificate. Child and Adolescent Needs and Strengths (CANS) (P. Chase, Director) CANS is an online reporting and communication tool that is required throughout Massachusetts for anyone performing behavioral health assessments on patients under 21 who use MassHealth. CANS is free of charge, available year-round, and may be accessed by nonprofessionals as well. (See full article on page 8.) Developmental Disabilities Dentistry Online (R. Fleming, PI) Still under development, this 10-module course is designed to serve as an online training program in special needs dentistry for dentists and other oral health professionals in general practice. The course will include virtual clinic simulations, video from experts in the field, interviews with dental patients who have disabilities and their families, and much more. Discovering Behavioral Intervention (DBI): A Parent s Interactive Guide To Applied Behavior Analysis (ABA) (R. Fleming, PI) DBI is a 10-module online course designed to provide parents with a background in applied behavior analysis so that they can be knowledgeable consumers of these services for their children. DBI intersperses videotaped interviews with parents and also includes interactive discussion provided by content experts in concrete, applicable language. DBI is available for purchase as a product or through a monthly subscription. (See full article on page 3.) Learning ABA for Paraprofessionals (C. Hamad & R. Fleming, PIs) Currently, there is a shortage of qualified individuals who can assist in providing therapies and intervention to the ever rising number of children with ASD. Learning ABA is designed to provide that guidance to paraprofessionals in a variety of ways, including narrated instruction, interactive experiences with a child that offers feedback based on choices made, a mastery-based skill-set that requires demonstrating proficiency at tasks, etc. (See full article on page 7.)

5 ...We want to give [our end users] something they can buy over the counter that won t cost very much their education and clinical budgets can afford it and is evidence based instructional technology at the highest level. UDiscovering: The Home for Shriver Center Online Learning Products Developing a successful online learning course is only part of a longer-term equation. Once the content and materials are in place, marketing is needed to deliver the product to an appropriate audience. Recently, Maura Buckley, Product Manager for UDiscovering and the Discovering Behavioral Intervention (DBI) online course, discussed her role in this process, current plans for DBI, and how similar products may lead to future marketing endeavors. Q: What is UDiscovering, and who is involved with it? A: UDiscovering is the brand that encompasses products developed through the Shriver Center designed to reach individuals with intellectual and developmental disabilities (ID/DD), their families, and professionals who work with individuals with ID/DD. UDiscovering is part of UHealthSolutions, the marketing arm of UMass Medical School. As far as involvement goes, the team at Shriver is responsible for product development. Commonwealth Medicine assists with the marketing piece of finding an audience and commercializing the product. UHealthSolutions offers product management and additional operational support. Overall, we hope that UDiscovering continues to grow along with the staff that supports it. Q: How did you become involved with DBI as product manager A: I was part of the team involved in developing what became DBI from the initial grant led by Rick Fleming and others. Later, when UMass and UHealthSolutions came up with the idea and ability to commercialize these products, they were looking for someone with experience in sales and marketing who was also within the autism community and brought insights from that. As a parent of two children with autism, I was able to bring experience from all three areas. Q: Because DBI specifically focuses on individuals affected by autism and their families, does that affect the way you consider an audience for it? A: Yes. DBI is primarily marketed towards families of children with autism, including families who have a child recently diagnosed with autism, because DBI is a really great tool to assist in navigating the challenges that lie ahead. Those same factors also help determine what conferences we attend to promote DBI, the content which appears on our website (www.udiscovering.org), the outreach and information available on UDiscovering s Facebook page, and other outlets we may pursue. Discovering Behavioral Intervention is an easyto-use comprehensive learning guide to the world of behavioral intervention methods based on applied behavior analysis. This self-paced, 10-module guide uses real-life situations to teach you about behavioral intervention for your child. Maura Buckley, MPA, Product Manager for UDiscovering Q: What kind of feedback has DBI received at conferences so far? A: People really like what they see. Conferences are great, because they allow me to set up a module and take attendees through it in person, which I can t always do from behind a desk. Also, the fact that DBI is intended to teach and assist parents helps a great deal, because it allows professionals to confidently discuss and recommend DBI to families, having seen it in action. Q: How do you see DBI impacting future products by UDiscovering? A: DBI will play a key role and quite likely serve as a model for future efforts. Our focus right now is on growing the audience for DBI as much as possible, particularly since numbers regarding the prevalence of autism are estimated at 1 in 68. Online learning is finally meeting the world of ID/DD, and it is critically important to deliver that message. 5

6 training Disseminating Disability-Related Content and Courses Emergency Preparedness Online Simulation Assists First Responders Individuals with disabilities are at high risk of losing independence, sustaining serious injury, and dying from emergencies and disasters. As a result, it is important for emergency responders to learn, understand, and apply information about individuals with disabilities in these potentially lifethreatening situations. The Shriver Center and Praxis, Inc. recently completed development of an online educational simulation called Rescue-D. Funded through a Small Business Technology Transfer (STTR) grant from the National Institute of Health, Rescue-D is an interactive simulation with game-like features designed to teach first responders about the unique needs and capabilities of individuals with disabilities. In Rescue-D, learners take the role of Responder Brown, a fictional first responder who must interact with characters, each of whom has a different disability. Learners must decide from an array of choices the best way to assist the characters in an emergency. Game scenarios include: Identifying characters with disabilities at a mall and assessing their potential emergency needs, evaluating a fellow responder s decisions, and safely evacuating people with varying disabilities from an impending flood. First responders from around the country were recruited to complete Rescue-D. Shriver Center Project Manager Sue Wolf-Fordham, J.D., who also served as co-lead content developer for the simulation, elaborated on learner needs. Prior to developing Rescue-D, first responders indicated that they often found online courses to be dry, not interactive enough, with too much focus on tests. So, we came up with a format to address those needs and hold the responders attention. The course is highly interactive and knowledge tests are integrated into the ongoing storyline so that the learner isn t aware of being assessed. Learner feedback after participating was extremely positive. We designed Rescue-D with input from both responders and people with disabilities, Wolf- Fordham says, so that it reflects issues of importance to both groups. We designed Rescue-D Image from Rescue D: Rescue from the Flood Zone: What s the best way to evacuate the Bingo players? Janet Twyman, PhD, instructional design expert, and Associate Professor of Pediatrics at UMass Medical School, was impressed both by the novelty of the project and its ability to have an immediate, positive impact on the lives of individuals with disabilities. While Rescue-D is certainly not a finished product yet, it definitely gave me a good feeling to know that this type of emergency preparedness information could be effectively communicated through online learning. I am happy to have been involved with such a multidisciplinary team right from the start. The overall sense of collaboration was truly a good feeling, and this can truly make a difference in the lives of individuals with disabilities, Twyman said. Project Coordinator Nancy Shea, JD, MPA, concurs. I ve been working on projects related to emergency preparedness since I began here two years ago, but it is so exciting to see this information presented in a truly interactive way so that it can reach a wider audience. with input from both responders and people with disabilities so that it reflects issues of importance to both groups. Rescue-D Development Team Members Jennifer Brooks, BA, Recruitment Coordinator Christophe Gerard, PhD, Director of Disability Technology Development Charles D. Hamad, PhD, Principal Investigator Ann Maloney, MD, Technical Consultant, UMass Medical School Nancy Shea, JD, MPA, Project Coordinator Janet Twyman, PhD, Instructional Design Expert Sue Wolf Fordham, JD, Project Manager, Co-Lead Content Developer 6

7 Learning ABA offers a unique, immersive training experience, and combines multiple teaching approaches for honing the user s skills based on mastery. Learning ABA Course Teaches Paraprofessionals Fundamentals of Behavioral Intervention Research indicates that the prevalence of autism spectrum disorder (ASD) is rising, with current estimates by the Centers of Disease Control and Prevention citing one in every 68 being diagnosed with the disorder. Given these statistics, it is critical that professionals be well-versed in best practices for working with children with ASD in a variety of settings, such as the classroom and similar learning environments. Applied Behavior Analysis (ABA), is an individualized, evidence-based intervention that allows professionals to interact with and assist children to achieve positive learning outcomes. However, there is currently a shortage of qualified professionals at all levels that possess the knowledge and skills to work proficiently with children with ASD. The online course Learning ABA for Paraprofessionals aims to change that. Funded by a grant from the Eunice Kennedy Shriver National Institute of Child and Human Development (NICHD) awarded jointly to Praxis, Inc. 1 and the Shriver Center, Learning ABA offers a unique, immersive training experience, and combines multiple teaching approaches for honing the user s skills based on mastery. Co-investigator and course designer, Richard W. Serna, PhD, explained just what is meant by the term paraprofessionals. Paraprofessionals in special education settings most often refers to individuals, such as teacher aides, who work in classrooms alongside the primary teacher. But, it also refers to staff that work at a service agency serving individuals with disabilities, where their primary function is to implement treatment programs designed by a clinician. Learning ABA offers training opportunities for either new paraprofessionals or those seeking employment in the field. For example, would-be paraprofessionals could use the course to become well-versed in the fundamentals of behavioral intervention to increase their chances of landing a job, or agencies could use the course to cut down on the amount of time needed for traditional in-person training, he elaborated. Serna s mention of training highlights another durable aspect of Learning ABA; it is designed to mimic the type of interaction paraprofessionals would receive live in a room with children. Learning ABA involves very little actual reading. We provide basic information to the learner, of course, but much of the course involves recorded narration or having content experts discuss situational responses in video clips. Most importantly, it also includes interactive simulation-based exercises the user can take part in with a virtual child. The simulation exercises provide feedback on choices made by the user, Serna said. Students must achieve a minimum score to move on to the next module, and Serna praised this mastery-based approach. Learning ABA is unique because it encourages skill retention and adaptability, two characteristics necessary to working with children with autism. Effective learning is so much more than memorization; you must apply the skills you know, Serna concluded. 1 Hamad is the President and Founder of Praxis, Inc. Learning ABA includes interactive simulation-based exercises with a virtual child that provides feedback to the user. Learning ABA for Paraprofessionals: Team Members Cindy Fleming, MS, Educational Specialist, Praxis, Inc. Richard Fleming, PhD, Co-Principal Investigator Charles Hamad, PhD, Principal Investigator Harold Lobo, PhD, BCBA-D, Co-Designer, Praxis, Inc. Richard Serna, PhD, Designer, UMASS Lowell 7

8 training Disseminating Disability-Related Content and Courses CANS Online Training and Certification Aides Clinicians and Families Philip Chase, PhD, Director for the Child and Adolescent Needs and Strengths (CANS) Program CANS Team Members In addition to Chase s role as Director of the CANS Program, other current key team members include: Angelica Aguirre, BA, Special Projects Coordinator Ben Amankwata, MS, MBA, Business Analyst Derek Chaves, BS, Technical Project Manager/ Business Analyst Viet Do, Web and Database Developer Charles Hamad, PhD, Shriver Center Interim Executive Director Melissa Maslin, M.Ed., Research Associate Lena Riccardi, CANS Project Coordinator John Rochford, MS, INDEX Director of Technology and Internet Accessibility Specialist Children referred for behavioral health services often benefit from assessments specifically designed to offer insight into their personal needs and strengths. When clinicians wish to support family involvement, for example, it helps to assess the extent that caregivers are available to help a child with peer relationships. Likewise, clinicians are more apt to help teachers boost a student s school performance when assessments identify a child s talents and interests. Faculty and staff at the Shriver Center, in conjunction with Child Behavioral Health Initiative (CBHI) of the Massachusetts Executive Office of Health and Human Services (EOHHS), have created and maintain the training and certification of clinicians for using the staterequired assessment tool in Massachusetts for MassHealth providers, the Child and Adolescent Needs and Strengths (CANS). Philip Chase, PhD, the Director of the CANS project, recently discussed some of CANS unique characteristics. CANS is largely a communication and collaboration tool that helps clinicians gather information about children and youth and respond to that information by emphasizing an individual s needs and strengths. CANS uses a series of standardized descriptions about a child and his or her circumstances that are rated to indicate the importance of a particular factor in a child s life. The responses generated then allow clinicians to work collaboratively with parents, families, caregivers, school systems, and others in developing strategies that emphasize specific strengths and address specific needs for the child, Chase explained. According to Chase, the CANS assessment is divided into domains and items. A domain describes a general type of activity, such as risky behavior. The items connected within that domain concern more specific needs, such as evidence of self-mutilation, or strengths, such as family support. For example, under the domain Child Strengths, the item family states: This item refers to the presence of a sense of family identity as well as love and communication among family members. Each item is rated on a four-point scale. Lower scores indicates an absence of need or a strength that can be used as a centerpiece for a plan. Higher scores indicate a need for action or that strength building is required. For the item on family, the following scale is used: 0 Family has one or more good relationships, and communication is good. 1 Family has one or more strong relationships where communication is effective 2 Strength building is required to develop stronger relationships and/or strengthen the family s ability to communicate. 3 There is no evidence of any family relationships as strength at this time or the child has no identified family, or the family requires significant assistance to develop relationships and their ability to communicate. continued on next page 2 8

9 CANS is not about the why, it s about the what, Chase quotes its developer, John Lyons. It doesn t focus on individual motivations for each behavior or a clinician s view of why a strength or need exists. Instead, CANS presents a comprehensive descriptive listing of factors present in a child s life that may affect his or her situation, continued from previous page Once a clinician has collected information about the child, s/he then enters rated responses into a database, as a way of offering individualized information that is updated every 90 days. The descriptive aspects of domains and items is particularly important because it relates to a larger point about what CANS is designed for: CANS is not about the why, it s about the what, Chase quotes its developer, John Lyons, PhD. It doesn t focus on individual motivations for each behavior or a clinician s view of why a strength or need exists. Instead, CANS presents a comprehensive descriptive listing of factors present in a child s life that may affect his or her situation, he elaborated. Dr. Lyons Praed Foundation maintains the copyright on CANS to maintain its intellectual integrity. The CANS remains free for individuals and organizations dedicated to improving the lives of children and families. According to the Foundation s website, a version of the CANS assessment is currently available statewide in 16 states, while CANS has a presence in 38 states overall. CANS is currently used in child welfare, mental health, juvenile justice, and early intervention applications. In Massachusetts, clinicians are required to complete the CANS training and certification in order to provide behavioral health assessments to children and youth under the age of 21 who receive MassHealth. Clinicians enrolled as MassHealth providers or as network providers in one of MassHealth s contracted managed care entities are required to obtain CANS training and pass a certification exam. The CANS training and certification is also available to nonprofessionals free of charge. Chase estimates that over 10,000 people have been actively certified by the state of Massachusetts since the program s inception in The CANS website can be found at: The Praed Foundation website can be found at: John Lyons, PhD, CANS Developer, welcomes users to the course. CANS training focuses on a variety of key topics for clinicians. One of these is Culturally Informed Practice, as shown. 9

10 perspective Participating in the Development of a Shriver Center Online Course Behind the Lens Rhode Island native Paul Roselli has been a documentary filmmaker for approximately 30 years. His work has covered a diverse range of topics, from war generals to food security to health care. Paul shared his talents with the Shriver Center, filming parents of children with autism who were interviewed about their experiences as part of the Developing Behavioral Intervention (DBI) online course. He recently spoke about the experience. Q: How did you become involved with the Shriver Center? A: I knew Rick Fleming from his time working at another organization in Rhode Island. He also knew that I was a filmmaker, so when he mentioned working on a project involving parents and autism that would require interviews, it seemed like a natural fit. Q: How did you see your role in the project? A: I m a storyteller. Video is a great medium for projects like DBI, because it allows anyone taking the module to truly see the very real emotions people experience when dealing with autism rather than just reading text. DBI provides the facts, but also goes one step further. For example, asking a parent how they coped after receiving the diagnosis of autism for their child delivers more impact than simply reading about coping strategies from experts. This helps people using the course know they aren t alone and others have gone through similar things. That is very important, but also very personal. So I tried to make the interviewees as comfortable as possible. Q: Can you elaborate on that? A: I would encourage them to do the interviews somewhere familiar, maybe at home around family pictures, to help show us where their lives takes place. The last thing I wanted to do was to show them in a sterile office space with blank walls and no memorabilia. Also, the interviews were conversational, so people could say what they felt and not be judged. Many times, someone would respond to a question, pause, and then change their answer after thinking about it. That was important to show and to see, because it illustrated how people deal differently with the challenges autism brings. Paul Roselli, filmmaker on Discovering Behavioral Intervention project Q: How many interviews did you conduct? A: Approximately six. Q: Did your time on the project match your expectations? A: Yes. Everyone on the team made a conscious decision to let the emotion remain in the interviews rather than polish them up, which I feel helped the project a lot. Also, everyone at Shriver was very committed to and passionate about the project, while understanding it could help a lot of people. I truly enjoyed the experience. For more information on Paul Roselli, including his latest film These Three Words, visit his Vimeo page at: user

11 Video is a great medium for projects like DBI, because it allows anyone taking the module to truly see the very real emotions people experience when dealing with autism rather than just reading text. Disability Rights Online Course Breaks Down Barriers of All Kinds Nancy Shea, JD, MPA, has a multifaceted knowledge of the legal system from her background as an attorney, Shriver Center LEND alum, and project coordinator for the Emergency Preparedness program. She now channels those interests in a new direction: as the instructor of an online course entitled Disability and the Law: Rights of People with Disabilities. The course is offered by UMass Lowell, through its UMass Online division, and may be combined with other courses to receive a Disability Studies minor from the university. Shea was introduced to the program by her former LEND instructor, Lee Vorderer, MA, who also teaches in the online program. She began her fourth semester as an instructor in January She admitted to having reservations about online distance learning early on. I wasn t sure how I would adapt to the technology, but I m pleased with the results so far. It s easier to revise and update course material online, which is good because the law is always changing, she explains. Due to this fluidity and since the material is geared for nonlawyers, Shea focuses on the real life application of prominent disability rights laws including the Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), and the Social Security Administration s Ticket To Work program, rather than more technical aspects of the law. I love knowing that The course operates using Blackboard Learn and is taught entirely online. Still, interactivity and debate occur through posted readings, student-generated written responses to those readings, continuous online discussion and reaction between classmates, and weekly online chat sessions. Shea also notes that online learning can change the dynamic of conversation. In a traditional classroom, students are used to speaking casually; they may also rely on characteristics like tone of voice or facial expressions. Writing takes away that ability, and focuses the student on making an effective point through writing. Although that can be challenging for many students, it is also good practice, Shea says. people worldwide can take this course while sharing information at the same time. Shea also notes that many of her students have some connection to the disability field. One, for example, assists individuals with disability-related accommodations at Disney World. Another is the parent to a child with disabilities, and many are teachers of children with disabilities. Still others are war veterans who became disabled in combat and use online courses to continue their education because traveling and physical access to buildings is difficult. Everyone brings a unique perspective to the course, and that definitely adds to the class discussions. Sometimes, those different perspectives cause strong feelings, but everyone is shaped by their own experiences, Shea explains. Shea estimates she has taught about 80 students over the last two years, including one originally from the African country of Ghana. I love knowing that people worldwide can take this course while sharing information at the same time. For that reason, I think online learning will remain a permanent fixture. It allows everyone involved to maximize their potential and abilities, Shea concludes. (For more information on this course, visit Nancy Shea, JD, MPA, Disability and the Law online course instructor. Shriver Center spotlight SHRIVER CENTER SPOTLIGHT is published twice per year by the Eunice Kennedy Shriver Center at UMASS Medical School. The Shriver Center is dedicated to advancing local, national, and international efforts to improve the quality of life for individuals with intellectual and developmental disabilities (IDD) and their families. To that end, we carry out research to understand environmental and biological processes that influence behavioral development. In parallel and in collaboration, we carry out IDD-relevant programs of technology and information dissemination, education and training, technical assistance, and clinical service. SHRIVER CENTER SPOTLIGHT Editorial Staff Interim Executive Director: Charles Hamad, PhD Interim Associate Director: Carol Curtin, MSW Editor: Elaine Gabovitch, MPA Writer: Patrick Gleason, MA Photographer: Richard Caira Layout & Design: Susan Sutherland Designs Feedback We appreciate your feedback. Please send your comments and suggestions to: Elaine Gabovitch, Editor SHRIVER CENTER SPOTLIGHT UMMS/Shriver Center 465 Medford Street, Suite 500 Charlestown, MA Phone: Publication and copyright information: SHRIVER CENTER SPOTLIGHT and its content are copyrighted by the E. K. Shriver Center; some materials may carry other copyrights (noted where appropriate). Permission is granted to quote from us at length, while giving credit to the SHRIVER CENTER SPOTLIGHT, a publication of the Eunice Kennedy Shriver Center (and original author, if appropriate). SHRIVER CENTER SPOTLIGHT is supported by Grant #ADD90DD from the U.S. Administration on Developmental Disabilities. Opinions expressed may not reflect those of the E. K. Shriver Center, UMass Medical School or their funding sources. The Shriver Center is an equal opportunity employer and educator. Visit us on the Web at Eunice Kennedy Shriver Center, University of Massachusetts Medical School 11

12 snapshot Departmental Updates at the Shriver Center Snapshot provides brief, periodic updates designed to detail new and ongoing projects, announce changes, or highlight achievements among the various departments at the Shriver Center. (Announcements appear alphabetically by specialty). Autism Insurance Resource Center AIRC Receives Funding from MA Department of Public Health for Work with Early Intervention The Autism Insurance Resource Center (AIRC) received funding from the MA Department of Public Health for technical assistance and support to Early Intervention staff and families. The funding will be used to train staff about the autism insurance law, develop tools, and provide assistance to help staff and families navigate insurance options to maximize access to behavioral treatments after age three. The AIRC s primary function is to assist consumers and families who have questions or are looking for useful resources concerning the implementation, coverage, and specifics of the Massachusetts autism insurance law, An Act Relative to Insurance Coverage for Autism (ARICA). ARICA mandates that all private insurers cover the diagnosis and treatment of autism spectrum disorders for Massachusetts residents. The AIRC is a project of New England INDEX, located at the Shriver Center. Its website can be found at CDDER Alexandra Bonardi, MHA ( Alixe ), Director of the Center for Developmental Disabilities Education and Research (CDDER), recently received a two-year grant from the Agency for Health Care Research and Quality (AHRQ). Entitled An Intervention to Reduce Falls Among Adults with Intellectual Disabilities, researchers will examine a clinical falls prevention-intervention targeted at adults with intellectual disability (ID) living in community residential settings. This study is being conducted in partnership with Visiting Rehab Services, an outpatient clinical provider of occupational therapy and physical therapy services. For individuals who already experience disability to some degree, injuries from falls can have an enormous impact on future health and function. The intervention aims to provide initial data on the efficacy and outcomes of this intervention, operationalize all intervention components, and evaluate the feasibility of using similar methods in future studies to effectively reduce falls. CDDER also continues to host quarterly webinars in conjunction with the Massachusetts Department of Developmental Services (DDS). Webinar topics are related to quality improvement and risk management, and all are archived for future use. Recent topics included: PICA and the Ingestion of Non-Food Items (September 2013) Constipation and Bowel Obstruction (December 2013) Dysphagia, Aspiration and Choking (March 2014) Oral Health (Coming June 2014) To register for the June, 2014 webinar, please contact: To listen to the archived webinars, please visit: https://www.umassmed.edu/cdder/webinars.aspx. Emergency Preparedness and Response By law, children and adults with disabilities are entitled to equal access to emergency and disaster services, but traditionally their needs are not considered in local emergency plans and first responders receive limited training about meeting the emergency needs of individuals with disabilities. The Active Planning project sought to address this issue via responder education and disability community collaboration. Over 800 Massachusetts responders and people with disabilities participated in the project, representing more than 120 local cities and towns. Nineteen communities assessed their emergency plans for gaps related to people with disabilities using a workbook developed at the Shriver Center. All 19 communities identified at least five gaps and developed low cost strategies to close the gaps, and to better meet the needs of community members with disabilities. Originally funded through a grant from FEMA through the MA Executive Office of Public Safety and Security,. the project is now available to interested cities and towns for a fee. For more information or to schedule a training, contact Project Manager Sue Wolf-Fordham at or by calling (774) CDDER team (pictured l to r): Alexandra Bonardi, MHA, Courtney Noblett, MPA, Christine Clifford, MHP, and Emily Lauer, MPH. This document was prepared under a grant from FEMA s Grant Program s Directorate, U.S. Department of Homeland Security. Points of view expressed in this document are those of the author and do not necessarily represent the official position or policies of FEMA s Grant Programs Directorate or the U.S. Department of Homeland Security. 12

13 In its latest attempt to better serve individuals with disabilities, INDEX staff has redesigned its website to make navigation easier and more intuitive for individuals whose disability may interfere with their ability to fully use the Internet. INDEX For the past four years, INDEX has sponsored and help manage the Boston Accessibility Unconference. The 2013 event was held on September 28, 2013 at Microsoft s New England Research & Development (NERD) Center in Cambridge. The Unconference is a participant-driven event that focuses on making technology accessible, including the Internet, web, mobile devices, games, and more. Most of the conference agenda is created by participants at the meeting to create an inclusive, collaborative experience, and represents an opportunity for designers, developers, usability professionals, accessibility experts, and end users to share information and learn from each other. Sessions held at the conference included: Best Practices for Accessible Video Captioning How to Make Your Google Documents Accessible Practical Ways to Make Your Website Accessible Beyond Video Captioning: Accessibility Through the Eyes of a Deaf Person Game Accessibility from the Front Lines Contact INDEX online at by telephone at (800) , or via TTY service at (800) for information on how to make your existing website or online course(s) accessible to people with disabilities. INDEX also specializes in designing information repositories, discussion forums, and online courses, all of which are accessible to people with disabilities. Massachusetts Act Early Elaine Gabovitch, MPA, Massachusetts Act Early State Team Leader and CDC Act Early Ambassador was awarded a one-year grant from the Deborah Munroe Noonan Memorial Research Fund 1, to develop educational training module for pediatric providers in culturally competent early identification practices for children with autism spectrum disorder using videotaped case examples. Working with Tufts Medical Center s Floating Hospital for Children and Boston Medical Center, the training will be pilot tested on their pediatric residents. Gabovitch was also awarded a two-year grant from the Health Resources and Services Administration s Maternal & Child Health Bureau (HRSA-MCHB) to address the Massachusetts Autism Commission s priority to develop a statewide approach for data collection to measure the needs and outcomes for children and youth with autism and developmental disorders in Massachusetts In partnership with CDDER, the project will (1) assess state needs of children with ASD & DD that align with the MCHB Healthy People 2020 core indicators; (2) refine a state plan to address identified needs; and (3) outline a plan to monitor and report on state ASD/DD activities and outcomes in the future. One Care Webinar Series Massachusetts was recently named one of 15 states selected to design new approaches aimed at improving coordination of care for individuals dually-eligible for MassHealth and Medicare. The Duals Demonstration program, called One Care, launched on October 1st, Staff at the Shriver Center One Care Team (pictured l to r): Melissa Maslin, M.Ed., Helen Hendrickson, MPA, and Angelica Aguirre, BA. Not pictured: Derek Chaves, BS. play a key role in training staff and providers in programmatic issues related to disability, cultural competency, and enrollee rights. One Care aims to develop person-centered approaches to coordinate care across primary, acute, behavioral health and long-term supports and services. The Shriver Center team will develop and host a fully-accessible learning website that makes it easy for providers to access both live and archived webinars, along with in-person conferences. In addition, the webinars include live-captioning for each event, accessible PowerPoint presentations, and, in one instance, live ASL interpretation. The webinars are primarily intended as a shared learning opportunity for plans and providers; however they are also publicly available and can be accessed anytime through a registration process. For specific information on One Care, please visit: consumer/insurance/onecare/ The Considering Culture in Autism Screening team: (l to r) Shari King, MA, Boston Medical Center (BMC); David Helm, PhD, ICI/Children s Hospital Boston LEND Program; Stephanie Blenner, MD, BMC; Kathleen Braden, MD, UMMS-Shriver Center LEND Program; Ivys Fernández-Pastrana, BMC; Bernadette Murphy Bentley, MPA, Tufts Medical Center; Roula Choueiri, MD, Tufts Medical Center; Lauren Bartolotti, MA, BMC; Lauren Willis, Intercultural Productions; Martha Ventura, UMMS-Shriver Center; Elaine Gabovitch, MPA, (PI), UMMS-Shriver Center. Not pictured: Alex Gomez, Intercultural Productions; Anne Hunt, PhD, UMMS-Shriver Center consultant; Melissa Maslin, M.Ed., UMMS-Shriver Center; and Jason Travers, PhD, UMass Amherst. 1 Administered by The Medical Foundation of Boston, Bank of America, N.A. 13

14 illuminati Faculty and staff profiles Specialties Faculty Since 2000 Titles Education Board Memberships and Advisory Roles 14 Charles D. Hamad, PhD Intellectual and Developmental Disabilities, Online Distance Learning, Applied Behavior Analysis, Child Psychology and Developmental Psychology Interim Executive Director UMass Medical School- E. K. Shriver Center (2014-present) UCEDD Co-Director, UMass Medical School- E. K. Shriver Center Associate Professor, Department of Pediatrics, UMass Medical School Assistant Professor, Department of Psychiatry, UMass Medical School Assistant Professor, Department of Pediatrics, Tufts University School of Medicine ( ) 1972, BA, Quinnipiac College, Hamden, CT, Psychology 1974, MA, C.W. Post College, Long Island University, Brookville, NY, Experimental Psychology 1977, PhD, University of Kansas, Lawrence, KS, Developmental & Child Psychology 1981, Post Doctoral Fellow, University of Pennsylvania Wharton School, Philadelphia, PA President & Founder, Praxis Inc., Belmont, MA Coordinator, Shriver Center Consumer Advisory Board Advisory Board, The Center for Integrated Primary Care, UMass Medical School Charles D. Hamad, PhD Research Interests In his role as the Interim Director of the UMMS-E.K. Shriver Center and as the UCEDD Co-Director, Dr. Hamad oversees several programs and initiatives. These include the Center for Developmental Disabilities Evaluation and Research (CDDER), New England INDEX, Emergency Preparedness and Response, Leadership Education in Neurodevelopmental and Related Disabilities (LEND), the Sibling Support Project, and the online distance learning program, among others. Each program embodies the Shriver Center s core mission of improving the quality of life for individuals with disabilities and their families through education, research, and service. Dr. Hamad also focuses on a unifying theme in his own research interests a systems approach to problems of social significance affecting people with intellectual and developmental disabilities. He is particularly noted for his work with applied behavior analysis (ABA) and with technological approaches designed to help children diagnosed with autism. Activities Dr. Hamad currently serves as an advisory board member to the Center for Integrated Primary Care at UMass Medical School. In addition, he is the President and Founder of Praxis, a business dedicated to solving learning problems for persons with disabilities and their families that also assists in the commercialization of products researched and developed at the Shriver Center. Dr. Hamad s ongoing commitment to distance learning when he was named one of the recipients of the prestigious Sloane C Award in 2008 for his role in content development for the online course Behavioral Intervention in Autism. Academically, he has published articles in a variety of national and international journals including the Journal of Special Education Technology, Obesity Research, Focus on Autism and Other Intellectual Disabilities, the International Journal of Behavioral Consultation and Therapy, and the Journal of Early Intervention, among others. He has also served as a past trustee to the Cambridge Center for Behavioral Studies. Career Influences & Vision for the Future By his own admission, Dr. Hamad came upon the disability field unexpectedly while in graduate school at the University of Kansas. Besides his academic interest in child and developmental psychology, he was also involved in environmental protection efforts and researching toy usage in a toddler center, examining which toys promoted engagement, social interaction, and language among the children. While at the University of Kansas, a professor encouraged Hamad and others to visit the Western Carolina Center, a residential center for individuals with intellectual disabilities based in North Carolina. There, the students developed a model program for individuals with significant disabilities who were nonverbal and required high levels of support. Dr. Hamad and the others stayed two weeks, and after his first prolonged exposure to the field of disabilities, he accepted the position of chief psychologist at the Fernald School. Later stints at Belchertown State School, and his role as Regional Facility Director of Southbury Training School in Connecticut combined to cement a feeling of dedication and commitment regarding the level of care, responsibility, and understanding of the real life decisions faced by individuals with disabilities and their families. Those same principles still guide Dr. Hamad s work today. Dr. Hamad is confident of the Shriver Center s continued success, thanks in large part to the wide range of content expertise and unique skill sets possessed by faculty and staff. Additionally, he believes the Shriver Center s ten-plus year affiliation with UMass Medical School is a key component of that success, particularly when combined with the Shriver Center s own commitment to individuals with disabilities and their families for more than 40 years. Current Research Support Dr. Hamad s ongoing Shriver Center research programs are funded with support from the National Institutes of Health (NIH) and the Administration on Intellectual and Developmental Disabilities (AIDD) under the following grants Co-Investigator with Dr. Richard Fleming Developmental Disabilities Dentistry Online, NIDCR, Co-Investigator with Dr. Steven Staugaitis, Risk Management in Developmental Disabilities, NICHD, Principal Investigator, University Centers for Excellence in Developmental Disabilities Education, Research and Service, AIDD, Recent Selected Peer Reviewed Articles Morrison, L., Fleming, C., Hamad, C. Gray, C., & Fleming, R. (2013). Online learning for early intervention professionals: Transition planning from early intervention to school. Journal of Special Education Technology, 28, (2), Hamad, C., Serna, R.W., Morrison, L., & Fleming, R. (2010). Extending the reach of early intervention training for practitioners: A preliminary investigation of an online curriculum for teaching behavioral intervention knowledge in autism in autism to families and service providers. Journal of Early Intervention, 23 (3) Selected Grant Awards Principal Investigator, University Centers for Excellence in Developmental Disabilities, Administration on Intellectual and Developmental Disabilities, Administration for Community Living, 1997-Present. Principal Investigator, Emergency Operations Plans for Individuals with Disabilities, National Institute of Child Health and Human Development (NICHD), Principal Investigator, Behavioral Intervention in Autism: Practitioner Skills, National Institute of Child Health and Human Development (NICHD), Principal Investigator, Developmental Disabilities Online, Maternal & Child Health Bureau (MCHB), Health Resources and Services Administration, Principal Investigator, e-aba Behavior Analysis Autism Training Project, U.S. Department of Education, Learning Anytime Anywhere Partnerships, Principal Investigator, Developmental Disabilities Leadership Forum, Maternal & Child Health Bureau,

15 Dr. Hamad is confident of the Shriver Center s continued success, thanks in large part to the wide range of content expertise and unique skill sets possessed by faculty and staff. E.K. Shriver Center LEND Fellows for We are pleased to announce the following individuals as Shriver LEND Fellows for the academic year: Katherine Lynn Blakeslee, BA Specialty: Psychology Katherine currently serves as an independent program evaluator. Katherine previously pioneered the Family and Community Outreach Coordinator s role at the Autism Consortium. In this position, she experienced firsthand the limitations faced by individuals with disabilities in the community. This was the catalyst for Katherine s own goal of using web-based technology to locate and ease access to the best tools, practices and resources for individuals with disabilities and their families.. Mallory Cyr, BFA Specialty: Public Health Currently pursuing an MPH degree from Boston University, School of Public Health, Mallory works in marketing and outreach for the Commonwealth Care Alliance to support the enrollment of dually eligible individuals from both MassHealth and Medicare as part of an integrated care demonstration project under the Affordable Care Act (ACA). Previously, at the Center for Medical Home Improvement, she served as national youth program manager for the Got Transition program, participating in quality improvement projects that promoted a transition process for young adults with complex needs. Lauren Lange, BA Specialty: International Affairs and Government With an academic concentration in Chinese language and Civilization, Lauren has participated in several international development and human rights programs in roles ranging from volunteer to consultant. Her own diagnosis with a disability sparked her passion in the field, serving as a policy analyst at the New York State Office for People with Developmental Disabilities and as a personal care assistant at Consumer Directed Choices, Inc. Lauren is focused on eradicating negative stigmas associated with disability and the direct care profession.. Julie Messina, MBA Specialty: Non-Profit Management With a background in private equity and investment banking, Julie is President of the 3-21 Foundation, a non-profit committed to enhancing the lives of individuals and families living with Down syndrome. She was awarded the Community Partnership Award from the Federation for Children with Special Needs for her leadership of the Learning Program Boston. Currently, her interests lie in developing research-based programs to improve educational outcomes for children with Down syndrome.. Molly Flueckiger, BA Specialty: Advocate/Project Manager Molly brings her experience as a commercial high-tech project manager and as a graduate of UMass Boston s Mediation Program to the LEND program. She is an elected Town Meeting Member and Chair of the Commission on Disability in Arlington, MA. As co-chair of the Greater New England Chapter of the National Multiple Sclerosis Society s Government Relations Committee, Molly advocates for programs and policies that support individuals with adult-onset disabilities living in Massachusetts. Nerissa Hall, PhD, CCC-SLP, ATP Specialty: Speech Pathology & Assistive Technology As a speech language pathologist, Nerissa is the co-founder of Communicare LLC, which offers consultation services to school districts to better support individuals requiring augmentative & alternative communication and assistive technologies. Originally from South Africa, she received her PhD in Communication Disorders from UMass Amherst in Her long-term goal involves assisting in the development of policies and procedures to ensure that all individuals can access necessary supports to help them communicate, participate, and function as independently as possible in their everyday environments. Dorothea Iannuzzi LICSW, BCBA Specialty: Social Work, Parent Dorothea is a behavioral health clinical social worker at Harvard Vanguard Medical Associates, and maintains a private practice. Additionally, she is a mother of two children (including a son with a diagnosis of ASD), a Board Certified Behavior Analyst, and is currently a doctoral student in the Social Work program at Simmons College. Her research interests include healthcare access disparities for individuals with autism, and Emergency Department utilization by this patient demographic. Robert Keder, MD Specialty: Pediatrics A third year developmental and behavioral pediatrics fellow at Boston Medical Center, Rob combines a love of community and assisting children and families in practice. These passions have taken many forms, including serving as a leader for the Special Friends Program while in medical school at Loyola University, which paired pediatric cancer patients and their siblings with medical students to illustrate the impact such a diagnosis has on families. Rob s research interests include bullying prevention, character development, and school climate. Christina Sakai, MD Specialty: Pediatrics Christina is a developmental behavioral pediatrics fellow at Tufts Medical Center. Her primary goals focus on improving systems of care for the well-being of at-risk pediatric populations. Particular areas of interest include: health service coordination and the well-being of children in the foster care system; healthcare transition from adolescence to adulthood of youth with behavioral and emotional challenges; and culturally competent healthcare for families of children with neurodevelopmental disabilities. Miriam Biurci Scrivener, MA Specialty: History, Parent Miriam currently serves as an information and referral specialist for Family TIES of Massachusetts., a role heavily influenced by her son s diagnosis of Asperger s syndrome and daughter s diagnosis of autism spectrum disorder with a co-morbid mood disorder. In addition to assisting families and professionals in locating necessary resources; Miriam also has an interest in helping to reform and update the current mental health system to improve individual and family access to care. Elspeth Slayter, PhD, MSW Specialty: Social Policy Elspeth combines her interest in social work with a longtime passion for social justice. As the sister of someone with an intellectual disability, she has seen firsthand the challenges faced by individuals with disabilities. As such, Elspeth serves in advisory roles at several organizations, including the Human Rights Board of the Northeast ARC and the Disability Commission for the city of Cambridge, Massachusetts. She is currently on sabbatical from her position as Associate Professor of Social Work at Salem State University. The Shriver Center Leadership Education in Neurodevelopmental and Related Disorders (LEND) program is an intensive 10-month program designed to enhance the knowledge and skills of future leaders, clinicians, and family members in interdisciplinary, family-centered, and culturally competent care of children with neurodevelopmental disabilities and their families. The program focuses on policy, legislation, leadership, and management skills; graduates are committed to improving the lives of children with developmental disabilities and their families by demonstrating excellence in clinical, scholarly, and professional disability efforts, and working as effective change agents at the program, institutional, community, regional and national levels. 15

16 focus on faculty Grant Awards, Publications, Presentations and Activities William McIlvane, PhD, Named Director of Academic Development for Commonwealth Medicine Shriver Center faculty and staff would like to congratulate the Shriver Center s previous Executive Director, William McIlvane, PhD, on his new position as Director of Academic Development for the Commonwealth Medicine (CWM) Division of UMass Medical School. This new position will afford Dr. McIlvane an enterprise-wide role in supporting dissemination of the work being done throughout CWM to regional, national and international audiences. In addition, he will also focus on activities aimed at enhancing career development opportunities for the CWM faculty. This latest transition for Dr. McIlvane comes as he celebrates 40 years of service in his professional career, which began in 1974 as director of a center for children with learning disabilities and mental health issues at the Manhattan Children s Center in the New York State Department of Mental Health. He first arrived at the Shriver Center in 1977 as a graduate student in the Behavioral Sciences Department. McIlvane later served as director of that department in 1993, before assuming the position of Executive Director in No matter what his position or title, Dr. McIlvane maintains his professional interest in understanding and improving the behavioral deficits of persons with neurodevelopmental disabilities. This commitment is evident in a multitude of ways, from his publishing over 160 peerreviewed journal articles in a variety of national and international publications since 1985, to his remarkable record of obtaining NIH grant funding, to establishing a collaborative Institute on Behavior, Cognition, and Learning with colleagues in Brazil, and much more. Dr. McIlvane s contributions to the field of I/DD have been widely acknowledged by colleagues across disciplines as well. He received the Association for Behavior Analysis Continuing Contributions Award in 2001 with colleagues in the Shriver Center s Behavioral Technology Group and the American Psychological Association s prestigious Don Hake Basic/Applied Research Award in Dr. McIlvane has overseen tremendous growth and change during his tenure at the Shriver Center, represented most recently by the Shriver Center s move to new locations in Charlestown and Worcester. He is stepping down in his role as the Shriver Center s Executive Director but will maintain an advisory role with Shriver Center and Commonwealth Medicine leadership, and will continue to participate in grant and William J. McIlvane, PhD research activities with his Shriver Center colleagues. Charles Hamad, Ph.D., will serve as Interim Executive Director of the Shriver Center. David Polakoff, MD., M Sc., Chief Medical Officer and Associate Dean of Commonwealth Medicine, praised Dr. McIlvane for his exceptional leadership of the Shriver Center when making the announcement of his promotion. Faculty and staff at the Shriver Center certainly concur, and wish him the very best in this new and exciting endeavor. Grant Awards Linda Bandini, PhD & Carol Curtin, MSW. The Healthy Weight Research Network for Children With ASD/DD. Health Resources and Service Administration (HRSA)/ Maternal & Child Health Bureau (MCHB) (Period: July 2013-June 2016). Alexandra Bonardi, MHA. An Intervention To Reduce Falls Among Adults With Intellectual Disabilities. Agency for Healthcare Research and Quality (AHRQ). (Period: July 2013-June 2015). William V. Dube, PhD. Contingency Analysis of Observing and Attending In Intellectual Disabilities. NICHD. (Period: September 2010-May 2015). Elaine Gabovitch, MPA. Considering Culture in Autism Screening: A Culturally & Linguistically Competent Training Curriculum for Pediatric Providers. Deborah Munroe Noonan Memorial Research Fund. (Period: September 2013-September 2014). Elaine Gabovitch, MPA. The Healthy People 2020 Roadmap for Massachusetts Children and Youth with ASD/ DD: Understanding Needs and Measuring Outcomes. Health Resources and Service Administration (HRSA)/ Maternal & Child Health Bureau (MCHB). (Period: September 2013-September 2015). Joanne Kledaras, PhD & Janet Twyman, PhD. Set2Read-AK (Alphabet Knowledge). NICHD/ Praxis, Inc. (Period: June 2013-November 2014). William J. McIlvane, PhD. Atypical Effects of Reinforcement Procedures in ASD. NICHD. (Period: September 2013-August 2015). Emily Rubin, MA. Sibling Support Demonstration Project. Klarman Family Foundation. (Period: January 2011-June 2014) Amy Weinstock, MA. Technical Assistance Program for the Autism Insurance Resource Center. Doug Flutie Jr. Foundation for Autism. (Period: January 2014-December 2014). Amy Weinstock, MA. Autism Insurance Resource Center. Massachusetts Developmental Disabilities Council. (Period: October 2013-September 2014.) Peer-Reviewed Publications Bandini, L.G., Lividini, K., Phillips, S.M., & Must, A. (2013). Accuracy of dietary reference intakes for determining energy requirements in girls. American Journal of Clinical Nutrition, 98(3), Brino, A.L.F., Campos, R. S., Galvão, O.F. & McIlvane, W.J. (in press). Blank-comparison matching to sample reveals a false positive symmetry test in a Capuchin monkey. Psychology & Neuroscience. Brino, A.L.F., Galvão, O.F., Picanço, C.R. F., Barros, R.S., Souza, C. B. A., Goulart, P.R.K., & McIlvane, W.J. (in press). Generalized identity matching to sample after multipleexemplar training in Capuchin monkeys. The Psychological Record. Byrd, H.C.M., Curtin, C., & Anderson, S. E. (in press). Attention deficit/hyperactivity disorder and obesity in U.S. males and females, age 8 15 years: National health and nutrition examination survey Pediatric Obesity. Curtin, C., Jojic, M., & Bandini, L. (In press). Obesity in children with autism spectrum disorders. Harvard Review of Psychiatry. Curtin, C., Mick, E., & Pagoto, S. (in press). The association between ADHD and eating disorders/pathology in adolescents: A systematic review. Open Journal of Epidemiology. (Special Edition on ADHD.) Curtin, C., Bandini, L.G., Must A., Gleason, J., Livdini, K., Phillips, S.M., Eliasziw, 16

17 Shriver Center faculty and staff would like to congratulate the Shriver Center s previous Executive Director, William McIlvane, PhD, on his new position as Director of Academic Development for the Commonwealth Medicine (CWM) Division of UMass Medical School. M., Maslin, M., & Fleming, R.K. (2013). Parent support improves weight loss in adolescents and young adults with Down Syndrome. Journal of Pediatrics, 163(5), de Sousa, N.M., Gil, M.S.C., A., & McIlvane, W.J. (in press). Discrimination and reversal learning by toddlers aged months. The Psychological Record. Deutsch, C.K., Hreczko, T.A., & Holmes, L. (2013). Quantitative assessment of craniofacial morphology in Johanson-Blizzard syndrome. Birth Defects Research Part A: Clinical and Molecular Teratology, 97(3), Dreyfus, D., Lauer, E., & Wilkinson, J. (2014). Characteristics associated with bone mineral density screening in adults with intellectual disabilities. Journal of the American Board of Family Medicine, (27), Dube, W.V., & Wilkinson, K.M. (in press). The potential influence of stimulus overselectivity in AAC: Information from eye-tracking and behavioral studies of attention. Augmentative and Alternative Communication. Dyke, M., Cuffee, Y., Halanych, J., McManus, R., Curtin, C., & Allison, J.J. (2013). The relationship between coping styles in response to unfair treatment and understanding of diabetes self-care. Diabetes Educator, 39(6), Gerard, C., Mackay, H.A., Thompson, G.B., & McIlvane, W.J. (in press). Rapid generation of balanced trial distributions for discrimination learning procedures: A technical note. Journal of the Experimental Analysis of Behavior. Grisante, P.C., de Rose, J.C., & McIlvane, W.J. (in press). Stimulus-stimulus emergent relations and samplecomparisons controlling relations in preschool children and individuals with Down Syndrome. The Psychological Record. Jayaratne, Y.S.N., Deutsch, C.K., & Zwahlen, R.A. (2013). A 3D anthropometric analysis of the orolabial region in Chinese young adults. British Journal of Oral and Maxillofacial Surgery, 51(8), Jayaratne, Y.S.N., Deutsch, C.K., & Zwahlen, R.A. (2013). Normative findings for periocular anthropometric measurements among Chinese young adults in Hong Kong. BioMed Research International, Johnson, C., Meleshkevich, O. & Dube, W.V. (2014). Merging separately established stimulus classes with outcome-specific reinforcement. Journal of the Experimental Analysis of Behavior, 101, Jones, B.M., & Elliffe, D.M. (2013). Matchingto-sample performance is better analyzed in terms of a four-term contingency than in terms of a threeterm contingency. Journal of Experimental Analysis of Behavior, 100(1), Lauer, E., Bonardi, A., & Staugaitis, S. (2013). Meeting the needs of patients with learning disabilities. British Medical Journal, 346, f3421. Letourneau, S.M., & Mitchell, T.V. (2013). Visual field bias in hearing and deaf adults during judgments of facial expression and identity. Frontiers in Psychology, 4, 319. Lionello-DeNolf, K.M., Farber, R., Jones, B.M., & Dube, W.V. (2014). Thematic matching as remedial teaching for symbolic matching for individuals with autism spectrum disorder. Research in Autism Spectrum Disorders, 8(5), MacDonald, J. M., Ahearn, W.H., Parry-Cruwys, D.E., Bancroft, S., & Dube, W.V. (2013). Persistence during extinction: Examining the effects of continuous and intermittent reinforcement on problem behavior. Journal Applied Behavior Analysis, 46(1), Mackay, H.A. (2013). Developing syntactic repertoires: syntheses of stimulus classes, sequences, and contextual control. European Journal of Behavior Analysis, 14, McIlvane, W.J. (2014). Associative concept learning in animals by Zentall, Wasserman, and Urcuioli: A commentary. Journal of the Experimental Analysis of Behavior, (101), Mitchell, T.V., Letourneau, S.M., & Maslin, M.T. (2013). Behavioral and neural evidence of increased attention to the bottom half of the face in deaf signers. Restorative Neurology & Neuroscience, 31(2), Must, M., Curtin, C., Hubbard, K., Sikich, L. Bedford, J., Bandini, L.G. (in press). Obesity prevention for children with developmental disabilities. Current Obesity Reports. Must, A., Phillips, S., Curtin, C., Bandini, L.G. (in press). Barriers to physical activity in children with autism spectrum disorders: relationship to physical activity and screen time. Journal of Physical Activity & Health. Must, A., Phillips, S.M., Curtin, C., Anderson, S.E., Maslin, M., Lividini, K., & Bandini, L.G. (in press). Comparison of sedentary behaviors between children with autism spectrum disorders and typically developing children. Autism. Ortega, F., Counter, S.A., Buchanan, L.H., Coronel Parra, A.M., Collaguaso, M.A., Jacobs, A.B., Rifai, N., Hoover, P.N. (in press). Declining blood lead and zinc protoporphyrin levels in ecuadorian andean children. Clinical Biochemistry. Books & Book Chapters Bandini, L.G., Curtin, C., Fleming, R.K., Maslin, M., & Scampini, R. (2013). Health U.: A Nutrition Curriculum for Teenagers with Intellectual and Developmental Disabilities. Charleston, SC: CreateSpace Independent Publishing. Cermak, S.A., Curtin, C., & Bandini, L.G. (2014). Sensory sensitivity and food selectivity in children with autism spectrum disorder. In V.B. Patel, V.R. Preedy & C.R. Martin (Eds.), The Comprehensive Guide to Autism. New York: Springer. McIlvane, W.J. (in press). Colaboração programática entre brasil e estados unidos na análise do comportamento: A história PRONEX (programmatic collaboration between Brazil and the United States in the analysis of behavior: The PRONEX story). In J.C. de Rose, M.S. Gill & D.G. de Souza (Eds.), Aprendizagem relacional e comportamento simbólico: Implicações para o ensino (relational learning and symbolic behavior: Implications for teaching). Sao Paolo: EDUNSEP. McIlvane W.J., Hunt A.T., Deutsch C.K. (in press). Behavioral Heterogeneity Among People With Severe Intellectual Disabilities: Integrating Single-Case and Group Designs To Develop Effective Interventions. In Romski M. & Sevcik R.A. (Eds). Examining the Science and Practice of Communication Interventions for Individuals with Severe Disabilities. Murphy, M., Redding, S., & Twyman, J. (Eds.). (2013). Handbook on innovations in learning. Philadelphia, PA: Center on Innovations in Learning, Temple University; Charlotte, NC: Information Age Publishing. Sharma, A., & Mitchell, T.V. (in press). Learning and plasticity: Cognitive consequences of deafness in childhood. In R.R. Fay, A.N. Popper & A. Kral (Eds.). Springer Handbook of Auditory Research: Deafness, Vol. 47. New York: Springer. Twyman, J.S. (in press). Behavior analysis in education. In F.K. McSweeney, & S. Murphy (Eds.). The Wiley-Blackwell Handbook of Operant and Classical Conditioning. Hoboken, NJ: Wiley-Blackwell. Wilkinson, K.M., O Neill, T., & McIlvane, W.J. ( in press.). Eye-gaze analysis of visual attention reveals how color and spatial cues help facilitate behavioral responding to aided AAC displays in school-aged children without disabilities. Journal of Speech, Language, & Hearing Research. Wilkinson, K.M., & McIlvane, W.J. (in press). Basic perceptual factors influence visual search for meaningful communication symbols in individuals with intellectual disabilities Healthy Weight Research Network for Children with ASD/DD Award The Health Promotion & Wellness in Developmental Disabilities Research Group at the UMMS-E.K. Shriver Center was recently awarded a threeyear grant from the Maternal Child Health Bureau to establish a national research network on healthy weight in children with autism and other developmental disabilities (ASD/ DD). The Healthy Weight Research Network for Children with ASD/DD is co-directed by Linda Bandini, PhD, Carol Curtin, MSW, and Aviva Must, PhD. The network is composed of a national, interdisciplinary team of established researchers with expertise in ASD/ DD and/or obesity. An advisory panel of nationally-recognized experts in public health, cultural competence, family-centered care, and self-advocacy will provide input into research agenda and guidance on key issues. The mission of the Network is to advance the understanding of obesity risk factors in children with ASD and other developmental disabilities, to promote the development of evidence-based solutions to achieve healthy weight in this population, and to disseminate research findings to broad and diverse audiences. The Network will fulfill an interdisciplinary research agenda by: (1) conducting research using existing datasets to improve knowledge about the prevalence of overweight/obesity, key risk factors, and obesity-related chronic and secondary health conditions among children and youth with ASD/DD; (2) engaging in formative work with the aim of understanding biopsychosocial barriers and facilitators to achieving healthy weight status; (3) conducting pilot feasibility and/or acceptability studies of interventions designed to prevent or reduce excess weight among children and youth with ASD/DD; and (4) developing collaborative relationships to leverage extramural funding to conduct interdisciplinary research. 17

18 focus on faculty Grant Awards, Publications, Presentations and Activities associated with Down Syndrome or ASD. American Journal of Intellectual and Developmental Disabilities. Conference Abstracts, Papers, & Invited Presentations Ahearn, W.H., Dube, W.V., Moore, K.M., Nevin, J.A., Shahan, T.A., & Sweeney, M.M. (2013). Alternative reinforcement, extinction, and resurgence with analog sensory reinforcers. The 39 th Annual Convention of the Association for Behavior Analysis International, Minneapolis, MN. Bandini, L.G. (2013). Obesity in children and adolescents with developmental disabilities. 12 th Hellenic Congress of Nutrition & Dietetics, Athens, Greece. Bonardi, A. (2013). Assistive technology at the Shriver Center: An overview and perspectives. EU Science: Global Challenges, Global Collaborations Conference, Brussels, Belgium. Bonardi, A., Lauer, E.B.,E., Hill, C., & Kilpatrick, L. (2013). Health surveillance in the population with intellectual disability: Case definition in state level data. The 141 st Annual Meeting and Expo of the American Public Health Association, Boston, MA. Bonardi, A., & Clifford, C. (2013). Interventions to reduce oral health disparities between adults with I/DD and the general population: A systematic review. The American Academy of Development Medicine and Dentistry Annual Meeting, Mesa, AZ. Braga-Kenyon, P., Guilhardi, P., & Dube, W.V. (2013). Prompts requiring simple and conditional discriminative control in conditional discrimination training. The 39 th Annual Convention of the Association for Behavior Analysis International, Minneapolis, MN. Clifford, C., Bonardi, A., Harger, N., & Holder, M. (2013). Uncovering the evidence: systematic review of interventions to reduce oral health disparities between adults with intellectual disability and the general population. The 141 st Annual Meeting and Expo of the American Public Health Association, Boston, MA. Concepcion, A., Rooker, G.W., Schlichenmeyer, K. J., Roscoe, E.M., Rolider, N.U., Pincus, S., Hagopian, L.P., & Dube, W.V. (2013). Measurement of between-session responding during functional analysis. The 16 th Annual Meeting of the Maryland Association for Behavior Analysis, Baltimore, MD. Curtin, C., & Bandini, L.G. (2013). Promoting the health of people with intellectual disabilities: a focus on healthy eating & physical activity. Enhancing Healthcare for Persons with Intellectual Disabilities Forum for Healthcare Providers, sponsored by New England States Consortium Systems Organization, Portland, ME. Curtin, C., Mattern, K., Humphrey, K., Vronsky, K., Nicastro, S., & Cohen, S. (2013). Mentoring program for adolescents with autism spectrum disorders: A pilot study [Abstract]. Pediatric Academic Society. Deutsch, C.K. (2013). 3D imaging and informatics approaches to diagnose genetic conditions. Bio-IT World Conference, Boston, MA. Deutsch, C.K., Bodkin, J.A., Lerbinger, J., Johnson, F., Kim, D., Levy, D.L. (2013). Macrocephaly as an endophenotype in Schizophrenia: Overrepresentation in probands and their clinically unaffected first degree relatives. (Published Abstract) American Society of Human Genetics, Boston, MA. Deutsch C.K., Momen- Heravi, F., & Dräger, U. (2013). Coming to Grips with Heterogeneity in Neuropsychiatric Disorders: Epigenetic Analytic and Therapeutic Approaches. (Published Abstract) EpiCongress, Boston, MA. Deutsch C.K., Momen- Heravi, F., Francis, R., Hunt, A.T., Stoler, J.M., Holmes, L.B., Sebat, J. (2013).Divergent and convergent dysmorphic phenotypes among patients with rare de nove copy number variants and neuropsychiatric disorders. (Abstract). World Congress on Psychiatric Genetics, Boston, MA. Dube, W. V. (2013). Translational behavior analysis in intellectual disabilities. 24 nd Annual New York State Association for Behavior Analysis Conference, Saratoga Springs, NY. Farber, R., Lionello-DeNolf, K.M., Jones, B.M., & Dube, W.V. (2013). Training on thematic matching increases accuracy on arbitrary matching for an individual diagnosed with autism. Third Annual Convention of the Association of Professional Behavior Analysts, Las Vegas, NV. Farber, R., Lionello-DeNolf, K.M., Jones, B.M., & Dube, W.V. (2013). Training on thematic matching increases accuracy on arbitrary matching for an individual diagnosed with autism. The 39 th annual Meeting of the Association for Behavior Analysis International, Minneapolis, MN. Gabovitch, E.M. (2013). Leadership, networking and career development for MCHB trainees and former trainees. Making Lifelong Connections 2013 Conference, Co-Hosted by University of Wisconsin Pediatric Pulmonary Center (PPC), the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (LEND), and the University of Alabama at Birmingham PPC, Chicago, IL. Gabovitch, E.M., Daniels, A., Miller, C. & Timmens, R. (January 26, 2014). Building culturally competent & comprehensive systems of care for children and youth with ASD/DD Annual Conference of the Association of Maternal and Child Health Programs (AMCHP), Washington, DC. Guilhardi, P., Braga-Kenyon, P., & Dube, W.V. (2013). How to successfully create matchingto-sample curricula to teach relations among stimuli: An evidence-based practical overview. Massachusetts Association for Applied Behavior Analysis Third Annual Conference, Waltham, MA. Houtenville, A., Reichard, A., Lauer, E., & Bonardi, A. (2013). Health of people with intellectual disabilities: Can it be surveilled through existing data? The 141 st Annual Meeting and Expo of the American Public Health Association, Boston, MA. Hubbard, K., Bandini, L., Folta, S., Wansink, B., Eliasziw, M., & Must, A. (2013). Impact of a smarter lunchroom intervention on food selection and consumption among adolescents and young adults with intellectual and developmental disabilities in a residential school setting. The 141 st Annual Meeting and Expo of the American Public Health Association, Boston, MA. Lauer, E., & Bonardi, A. (2013). Utility of mortality surveillance in adults with intellectual and developmental disabilities. The 141 st Annual Meeting and Expo of the American Public Health Association, Boston, MA. MacDonald, R.P.F., & Dube, W.V. (2013). Challenges to a behavioral analysis of joint attention. 2 nd Annual Sarasota Symposium of Behavior Analysis, Sarasota, FL. Mackay, H.A. (2013). Developing syntactic repertoires: Syntheses of stimulus sequences, equivalence classes, and contextual control. Invited Participant. 2 nd Annual Sarasota Symposium on Behavior Analysis, Sarasota, FL. Mitchell, T.V., Meyer, S., Levoy, E., & McIlvane, W.J. (2013). Atypical electrophysiology of face perception in down syndrome. Proceedings of the 46 th Annual Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities, San Antonio, TX. Mitchell, T.V., Meyer, S., Levoy, E., & McIlvane, W.J. (2013). Deficient faceselectivity of the N170 in Down Syndrome. Biennial Meeting of the Society for Research in Child Development, Seattle, WA. Murphy, M., & Twyman, J.S. (2013). The center on innovations in learning. The Academic Development Institute 2013 Annual Indistar Summit, Richmond, VA. Noblett-Dutra, C. (2013). Computer-based training for improving caregiver support of preventive health screenings in adults with intellectual disabilities. The 141 st Annual Meeting and Expo of the American Public Health Association, Boston, MA. Rubin, E. (2013). Improving family-centered mental health care by supporting siblings of children and adolescents admitted for psychiatric hospitalization. The 141 st Annual Meeting and Expo of the American Public Health Association, Boston, MA. Twyman, J.S. (2013). E-learning 101: Putting the big picture into focus. Webinar sponsored by the Center on Innovations in Learning. Twyman, J.S. (2013). Innovation to accelerate school turnaround. Paper presented at the Office of School Turnaround and The Center on School Turnaround Conference, Arlington, VA. Twyman, J.S. (2013). The intersection of behavior, education, and technology. Association for Behavior Analysis International Second Education Conference, Chicago, IL. Twyman, J.S. (2013). Providing technical assistance. Panel discussion conducted at the Office of School Turnaround and The Center on School Turnaround Conference, Arlington, VA. Twyman, J.S. (2013). Technologies of Teaching and Learning I: Technology of Tools. Paper presented at the Association for Behavior Analysis International s Seventh Annual International Conference, Merida, Mexico. Twyman, J.S. (2013). The Intersection of Behavior, Education, and Technology. Association for Behavior Analysis International s 2 nd Education Conference, Chicago, IL. Faculty Appointments & Awards Alexandra Bonardi, MHA was awarded the 2013 Catherine Anne Trombly Award for Contribution to Occupational Therapy Education and Research. Phillip N. Chase, PhD was appointed to the position of Director for the Child and Adolescent Needs and Strengths (CANS) Program, University of Massachusetts Medical School, Phillip N. Chase, PhD was appointed to the role of Professor in the Psychiatry Department, University of Massachusetts Medical School, Carol Curtin, MSW was promoted to the position of Interim Associate Director, E.K. Shriver Center, and UCEDD Co-Director, University of Massachusetts Medical School, William V. Dube, PhD was promoted to the position of Professor in the Psychiatry Department, University of Massachusetts Medical School, Elaine M. Gabovitch, MPA was reappointed to the position of CDC Act Early Ambassador to Massachusetts, Charles Hamad, PhD was promoted to the position of Interim Executive Director and UCEDD Co-Director, E.K. Shriver Center, University of Massachusetts Medical School, William J. McIlvane, PhD was promoted to the position of Director of Academic Development for Commonwealth Medicine, University of Massachusetts Medical School, John Rochford, MS was appointed to the position of Instructor in the Department of Family Medicine and Community Health, University of Massachusetts Medical School, John Rochford, MS served as an Invited Expert on the Web Content Accessibility Guidelines Working Group, and the Cognitive Accessibility Task Force of the World Wide Web Consortium,

19 Small but mighty, Team Shriver s efforts over the years have made a meaningful, sustainable contribution as a whole center all the while building community, comradery, and fun. Team Shriver Earns a Personal Best by Raising Funds and Spirits 2013 Top Fundraising Award, 2013 Lifetime Giving Award, and Top Fundraising Employee 2013 Team Shriver Walkers (l to r): Joanne Kledaras, James Gleason, Nancy Shea, William McIlvane, Barbara Fargnoli, Paul Fargnoli, Christophe Gerard, Melissa Maslin, Deborah Kirkcaldy, Richard Caira, Kim Caira, and Donna Caira. What do a pancake breakfast, cake walks, pizza parties, raffles, a yearlong indoor yard sale, movie nights with sales of admissions, popcorn and treats, a 5K walk, and the generosity of the Shriver Center staff and their families add up to? Since 2007, for the many Shriver Center faculty, staff, family members, and friends who have made up Team Shriver, these activities total the many ways they have taken part in the annual Walk to Cure Cancer, a fundraiser to support ongoing cancer research at the Cancer Center of Excellence, at UMass Memorial Health Care/UMass Medical School in Worcester. The mission of the Cancer Center is to deliver state-of-the-art cancer prevention, diagnosis and therapy while providing the most advanced research, clinical trials and patient support resources. This was a banner year for Team Shriver, who earned the 2013 Top Fundraising Award for the $21,162 raised at this year s annual Walk on Sunday, September 29, 2013, as well as a $25,000 Lifetime Giving Team Award. If those two milestone awards were not enough, Nancy Shea, Emergency Preparedness Project Coordinator whose daughter Kelley is thriving and living life to its fullest with a diagnosis of cancer, was the top fundraiser of all UMMS employees raising a remarkable $15,000. Walk Recognition events began early in 2013 with a kickoff breakfast held at the Medical School on July 24, Team Shriver was one of nine teams to receive this year s Lifetime Award accepted by Shriver Center administrative assistant Donna Caira on the team s behalf. On December 19, 2013, Team Shriver was honored at a lunch with UMass Medical School Chancellor Michael Collins, MD. Lastly, on January 17, 2014, researchers and physicians from the Cancer Center joined members of Team Shriver and other walkers at a Thank You Reception for 500 Club Members (those who raised over $500 for the walks and teams that raised over $1,000). At the event, Nancy Shea gave a moving speech reflecting on her daughter s cancer experience and pointed out that her contribution built upon the consistent foundation set by Team Shriver over many years. Small but mighty, Team Shriver s efforts over the years have made a meaningful, sustainable contribution as a whole center all the while building community, comradery, and fun. Carol Imposimato, Administrative Coordinator for the LEND program, has been the dedicated organizer of the yearround annual fundraising table she stocks with various items for purchase/donation. Imposimato discussed the award s significance, Team Shriver often has fewer participants than other departments from the Medical School. So, this award truly shows the difference anyone can make in the fight against cancer, and is a great reminder for everyone, she said. Joanne Kledaras, a member of Team Shriver since its inception, agreed and focused on another beneficial aspect of taking part. Research is desperately needed to develop new cancer treatments and improve existing ones. Anything we can do to assist with that is a good thing, she said. Donna Caira added, It s a great achievement for a wonderful cause, and we re all happy to play a part in it. Team Shriver Receives Plaque from Chancellor Collins (l to r): Joanne Kledaras, Melissa Maslin, Carol Imposimato, Charles Hamad, Donna Caira, Michael Collins, Christophe Gerard, Nancy Shea, James Gleason, Richard Caira. 19

20 Shriver Center Moves to Two New Locations Eunice Kennedy Shriver Center University of Massachusetts Medical School 55 Lake Avenue North, 3rd Floor Worcester, MA Programs & Personnel Located In Worcester Behavioral Research Group Intellectual and Developmental Disabilities Research Center (IDDRC) INDEX (including the Autism Insurance Resource Center) In November of 2013, the Eunice Kennedy Shriver Center faculty and staff relocated from their former campus in Waltham, MA to two new sites in Charlestown and Worcester. The move represents a change in geography, but not a change in the Shriver Center s mission. The move will help integrate the Center s work and research on behalf of people with intellectual and developmental disabilities with other important efforts at the UMass Medical School as well as continue to both deepen and expand current partnerships within the Metro-West Boston area. The Shriver Center has been affiliated with the University of Massachusetts Medical School since The Shriver Center s main office is now located on the medical school s main campus in Worcester, MA. The Shriver Center University Center of Excellence in Developmental Disabilities (UCEDD),Leadership Education in Neurodevelopmental and Related Disabilities (LEND), and Center for Developmental Disabilities & Evaluation Research (CDDER) programs are located in a new satellite office in Charlestown, MA. Programs & Personnel Located In Charlestown UCEDD Programs and Activities, including: Center for Developmental Disabilities Evaluation and Research (CDDER) Emergency Preparedness Response Initiative Health Promotion and Wellness in Developmental Disabilities Research Group Leadership Education in Neurodevelopmental Disabilities (LEND) Program Massachusetts Act Early Program Massachusetts Sibling Support Network Online Distance Learning Team Eunice Kennedy Shriver Center University of Massachusetts Medical School 465 Medford Street, Suite 500, Charlestown, MA Eunice Kennedy Shriver Center University of Massachusetts Medical School 465 Medford Street, Suite 500, Charlestown, MA DOUBLE ISSUE Shriver Center spotlight Focus on Distance Learning

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