Deafblind International (DbI) Network of the Americas Conference Partnerships for Lifelong Learning April 15-18, 2018 Cape Cod, Massachusetts Keynote and Plenary Speakers Anthony Lake Keynote speaker Anthony Lake most recently served as Executive Director of UNICEF, overseeing the United Nations’ global mission to improve the lives of all children and their families. A champion of humanitarian causes since the 1970s, Lake has also served on the board of Save the Children, advised the International Committee of the Red Cross and worked within the presidential administrations of Bill Clinton as national security advisor and Jimmy Carter as director of policy planning. Ed Bosso Ed Bosso is Superintendent and Executive Director of Educational Programs at Perkins School for the Blind, where he oversees all educational services on its campus in Watertown, Massachusetts, and in public schools. Bosso has more than 30 years of experience in special education and has previously held leadership positions as principal of the Delaware School for the Deaf, director of Statewide Programs for Deaf and Deaf Blind Students, and vice president of Gallaudet’s National Deaf Education Center. George Stern George Stern is a member of Deafblind Citizens in Action, a nonprofit dedicated to improving the quality of life for people with deafblindness. He has been blind since he was a toddler, having lost his sight after undergoing surgery to treat Bilateral Retinoblastoma. He started losing his hearing at age 4 and eventually began to identify as deafblind. Born in Jamaica, Stern is now a doctoral student at Texas Tech University, where he studies journalism and serves as president of the school’s Brazilian jiu jitsu club. Maurice Belote
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Deafblind International (DbI)
Network of the Americas Conference
Partnerships for Lifelong Learning April 15-18, 2018
Cape Cod, Massachusetts
Keynote and Plenary Speakers Anthony Lake Keynote speaker Anthony Lake most recently served as Executive Director of UNICEF, overseeing the United Nations’ global mission to improve the lives of all children and their families. A champion of humanitarian causes since the 1970s, Lake has also served on the board of Save the Children, advised the International Committee of the Red Cross and worked within the presidential administrations of Bill Clinton as national security advisor and Jimmy Carter as director of policy planning. Ed Bosso Ed Bosso is Superintendent and Executive Director of Educational Programs at Perkins School for the Blind, where he oversees all educational services on its campus in Watertown, Massachusetts, and in public schools. Bosso has more than 30 years of experience in special education and has previously held leadership positions as principal of the Delaware School for the Deaf, director of Statewide Programs for Deaf and Deaf Blind Students, and vice president of Gallaudet’s National Deaf Education Center. George Stern George Stern is a member of Deafblind Citizens in Action, a nonprofit dedicated to improving the quality of life for people with deafblindness. He has been blind since he was a toddler, having lost his sight after undergoing surgery to treat Bilateral Retinoblastoma. He started losing his hearing at age 4 and eventually began to identify as deafblind. Born in Jamaica, Stern is now a doctoral student at Texas Tech University, where he studies journalism and serves as president of the school’s Brazilian jiu jitsu club. Maurice Belote
Maurice Belote has served as Project Coordinator with California Deafblind Services (CDBS) at San Francisco State University since 1997. He has taught at both public and private schools throughout California and spearheads CDBS initiatives related to intervener training, early identification and referral. Belote is well-known nationally and internationally for his presentations and writing on topics, including tactile strategies, family resources and assistive technologies.
Exhibitors The exhibit hall at the Network of the Americas Conference is located in the Grand Ballroom Foyer. The exhibit will be open to conference participants from 1 to 6 p.m. on Sunday, April 15, and from 8 a.m. to 6 p.m. on both Monday, April 16, and Tuesday, April 17. CapTel Captioned Telephone Columbia Regional Program Deafblind International Differently Abled Communications Lamar University MassMATCH - Massachusetts Rehabilitation Commission Maxi-Aid National Center on Deaf Blindness National Family Association for Deaf/Blind New England Consortium for Deafblindness Technical Association NRTC on Blindness & Low Vision nWise Perkins School for the Blind InsideVision Sprint
Program
Sunday, April 15
8:00 AM - 5:00 PM Registration - Pool Foyer
1:00 PM Welcome and Conference Opening
Welcome: Marianne Riggio, Network Chair
Conference Opening: Dave Power, President and CEO, Perkins School for the Blind
Gill Morbey, President, Deafblind International Jo Ann McCann, Project Office, US Department of Education, OSERS
Clara Berg, President, National Family Association for Deaf-Blind And an International Welcome
Special Tribute to Dr. Jan van Dijk
Introduction of Keynote: Michael Delaney, Executive Director, Perkins International
Keynote Speaker: Dr. Anthony Lake, Past Executive Director, UNICEF
It’s About Ability: From Inspiration to “Of Course”
3:00 - 3:45 PM Workshops
S1.1 Teaching Concepts to Children Using the “BEST” Elements of Dance with Kristen Paul, Catherine Nelson, Paige Furbush, Cathy Cartwright, Brook Barnhill Room: Osterville A The purpose of this workshop is to introduce the “BEST” elements of dance. These include Body (body parts, balance, and inner self); Energy (adult-led flow, child-led flow, balanced turn taking, biobehavioral states, self-regulation, and motivation); Space (place, size, inward and outward focus, orientation and mobility); and Time (rhythm, anticipation, patterns, and timing) as a context for teaching academic, adaptive, and social skills during creative dance lessons to students with sensory impairment. At the end of the presentation, participants will incorporate the BEST elements into an interactive dance lesson for students who are deafblind. S1.2 Grupo Brazil in Partnership with Universities for Dissemination of Information, Research and Studies in the Areas of Deafblindness and Multiple Sensory Disabilities with Karina Maldonado, Shirley Maia, Vula Ikonomidis Room: Osterville B This presentation will discuss the various ways in which partnerships with public and private universities from different regions of Brazil are helping to disseminate information and consolidate research teams and study groups toward a common goal. Key results from research will be discussed, including the fact that today there are 151 students with deafblindness studying in higher education institutions.
S1.3 Oh the Places You’ll Go…After High School: Deaf-Blind Young Adults in Transition with Beth Jordan, Marilyn Trader Room: Centerville A This presentation will describe the summer programs available to young adults at the Helen Keller National Center. Transition institutes for young adults who are deafblind can offer invaluable mentoring opportunities and interactive social settings. With the passage of recent legislation in the United States, there’s never been a better time to be a young adult who is also interested in college and work after high school. Let’s generate some excitement! S1.4 Implementing the Tri-Focus Framework Strategies for Developing Effective Communication Programming for Learners with Deafblindness with Susan Bashinski, Susan Bruce Room: Centerville B This presentation will demonstrate how the Tri-Focus Framework strategies are relevant to communication programming for individuals who are deafblind. The three primary components of the Tri-Focus Framework are the individual, the communication partner and the environment. Discussions will focus on ways that interprofessional team members can best incorporate these strategies with children and young adults who are deafblind, as well as ways in which each can be implemented, realistically, in the student's daily learning environments. S1.5 How We All Learn: The Brain, The Body and Communication with Mark Compano Room: Orleans A This presentation looks at typical aspects of learning, sensory systems impact on learning, basic sociological and psychological developmental aspects of self, and then how those systems and experiences apply to learning for children and students with low incidence and high needs. Communication is the basis of all interactions, especially those focused on learning. How We All Learn looks at understanding how the student learns so that you can access identified best practices in a way that’s meaningful and functional to the student. Content will be presented through interactive formats of lecture, simulations, video examples and practice. S1.6 Communication Equipment Used by People Who Are Deafblind with Jerry Berrier and Scott Davert Room: Orleans B This presentation is an overview of the National Deaf-blind Equipment Distribution Program, iCanConnect. Positive outcomes and challenges will be discussed and a showcase of current adaptive equipment used to communicate via the internet, cellular network and landline network will take place. S1.7 Student-Centered AAC for Learners with Cortical Visual Impairment (CVI): Assessment, Design, and Implementation with Christopher Russell Room: Barnstable 1 To enhance the professional development of CVI, we need to integrate the unique adaptations and strategies that can serve to support the implementation of student-centered, accessible forms of alternative and augmentative communication (AAC), both aided and unaided forms, for students with CVI. This session will aim to address holistic communication intervention for children and youth with CVI and additional challenges, including deafblindness.
S1.8 Measuring the Longitudinal Growth of Learners who are Deafblind with Kristi Probst Room: Barnstable II The ability to adequately track student growth is key when IEP teams are making educational decisions. The purpose of this study, as we’ll learn in this discussion, was to explore the differences in the number, type and intensity of educational service provision and to track the longitudinal communication growth of students who are deafblind. We’ll also examine the implications and possible future research that can follow this study. S1.9 Open Your Eyes: Reflections of the Experience of a Person with Acquired Deafblindness with Guido Fernandez Cornide Room: Grand I In this presentation, Guido Fernandez Cornide, a 35-year-old man who woke up deafblind one day due to meningitis, will tell his unique story. Though he nearly died that day, Guido decided to use this life-changing circumstance to set out on a journey of self-reflection and personal growth. It has changed his life forever. As an extension of his memoir, Open The Eyes, Guido’s presentation will address topics most relevant to the deafblind community, their families and professionals working with this population. S1.10 Developing and Supporting Legislation to Recognize Interveners at the State Level with Michelle Clyne Room: Barnstable III In 2013, awareness of the purpose and role of interveners for the deafblind population across the state of Illinois was low, as measured by a survey of state special education coordinators. When the Illinois State Deafblind Project began a new cycle in October 2013, one of the main goals was to elicit State Education Agency approval of new language that would employ deafblind interveners as a related service. This presentation will share the various steps that were taken to increase awareness and necessity of deafblind interveners in the state of Illinois as well as the benefits that have emerged as a result. S1.11 The Sooner the Better: A Framework for Training Early Intervention Practitioners on Deaf-Blindness with Megan Cote, Emma Nelson, Sherri Nelson, Carol Darrah, Danna Conn Room: Grand II In April 2017, the National Center on Deaf-Blindness launched a product, “The Sooner the Better: A Framework for Training Early Intervention Practitioners on Deaf-Blindness.” This framework offers state deafblind projects a collection of online resources that can be used for customized training and technical assistance to early intervention providers, project staff, and families. This session will discuss the components of the framework and explain how these materials can be customized to meet individual and system-wide training needs for early intervention.
4:00 - 4:45 PM Workshops
S2.1 ADAMLS (Assessment of Deafblind Access to Manual Language) Supports Families, Rehabilitation Workers, and Educators in the Identification of Necessary Strategies
to Support Access to Sign and Fingerspelling for Individuals with Deafblindness with Robbie Blaha Room: Osterville A Sign and fingerspelling are visual in nature. As accessing visual information is an ongoing challenge for individuals with deafblindness, it is important to assess and identify the necessary strategies and accommodations that these individuals can utilize as they learn to comprehend manual communication. ADAMLS was developed to guide educators, rehabilitation workers and families in addressing this need. This presentation will address the concepts behind and applications of this tool. S2.2 Family Engagement and Leadership: Partnering Together in an Ever-Changing World with Clara Berg, Edgenie Bellah Room: Osterville B During this presentation, we will examine the multi-faceted aspects of family engagement and leadership, discussing both their similarities and differences. Through a collaborative discussion, we’ll identify the many opportunities that exist for family engagement and leadership at the individual, local, regional, and global level. We’ll also share ideas about the benefits of partnering with self-advocates and professionals, as they may help promote sustainable lifestyle choices that remain steadfast regardless of changes in the system. S2.3 Challenging Behaviors: Developing Strategies for Access to Quality Education with Karina Medina Room: Centerville A Children with disabilities and challenging behavioral patterns may find themselves excluded from the educational services they deserve if teachers do not have the tools, resources or training to meet their needs. To confront this issue, an action plan will be presented to the authorities of the Ministry of Education of the Córdoba Province, specifically the General Directive of Private Education Institutes, Special Mode. The plan proposes to deliver training sessions to integrate, in a coordinated manner, two main themes that can help provide meaningful tools to managers, teachers and educational teams. One theme focuses on the development and preparation of behavior plans, while the other addresses physical intervention techniques to implement when behavioral incidents occur. This presentation aims to share the development of the action plan, the content of the training and the impact on institutions and actors. S2.4 Cognition, Communication, Social Relationships and Engineered Environments: Conscious Teaching Practices and Processes for Deafblind Learners with Susan DeCaluwe Room:Centerville B Piaget’s theory of human intelligence believes that “the principal goal of education is to create learners who are capable of doing new things, not simply of repeating.” Van Dijk’s approach, meanwhile, encourages us “to live alongside the deafblind learner so that we can experience with him, so we can better understand his meanings, values and choices.” And Nielsen’s Active Learning Theory believes that “through active exploration and examination, the child achieves skills to use in interactions with others, fulfills her needs, and gradually lets her interact with instructions and education, and be an independent as possible.” Together these giants identified and delineated the steps necessary to integrate cognition, communication, social relationships and active learning environments to enrich the lives of the deafblind learners. This presentation will examine the great impact that each concept has on our teaching processes.
S2.5 Brain-Based Visual Impairment – So Many Children! So Many Teachers! Meeting the Training Need in Multiple Formats with Christine Roman Lanzky, Mary C. Zatta, Ellen Mazel Room: Grand I Teachers of students with visual impairments and orientation and mobility (O&M) specialists are challenged by the diversity of their caseloads and the student populations they serve. Teacher training programs struggle to provide their students with the breadth of knowledge needed to serve the wide-ranging abilities of individuals who are blind or visually impaired. Participants in this session will learn about the array of training models developed to meet the wide-ranging needs and learning styles of teachers and related service personnel through onsite, blended (hybrid) and online training courses. This presentation will also provide participants with information related to the various credentials that can be earned to substantiate their expertise in these areas. S2.6 Effective Positioning Interventions to Facilitate Fine Motor Skills in Children with CHARGE Syndrome and/or Deafblindness with Sarah Maust, Samantha Kublin Room: Barnstable I This presentation will provide families and service providers with researched evidence for adaptive positions that can best support and promote fine motor development for children with CHARGE syndrome. The need for increased proprioceptive sensory input for children with CHARGE syndrome has been well documented by deafblind educational specialist, David Brown. In learning and understanding this strong evidence in favor of positioning interventions and increasing proprioceptive input, families and providers can promote fine motor skills. The increase in fine motor skills can assist children with CHARGE syndrome and/or deafblindness to achieve optimal participation in school, self-care skills and play. Participants in this session will receive a brief overview of the three positions used in the research study and the impact each had on the development of fine motor skills. Results from the research will be presented and general recommendations and accommodations to the sitting environment of the child will be shared. Information will be reinforced through the use of case studies and visual examples of students who are deafblind. S2.7 DeafBlind Pocket Communicator: No-Tech Innovation Using 3D Printing with Amy Parker, Susan Sullivan Room: Barnstable II For many deafblind people, having a simple, low-tech tool is beneficial when traveling in the community or interacting with members of the public. This presentation will explain the tool called the DeafBlind Pocket Communicator, which is a slim, pocket-sized, no-tech device which displays the braille alphabet embossed beneath the corresponding raised print letters, numbers and symbols. This is a conversation tool for the deafblind with those who cannot fingerspell, and it can be used for writing limited braille messages and teaching the beginnings of braille. Prototypes on a 3D printer were created and further innovation is possible. S2.8 Building a National Collaborative Network for Deaf-Blind Services with Sam Morgan, Gail Leslie Room: Barnstable III In the United States, the provision of educational services for children who are deaf-blind depends on a nationally funded technical assistance model. Students with complex needs are often served in local schools where systemic barriers can make cohesive quality programming even more challenging. This presentation will offer ideas on how to take a cooperative approach
to build and sustain a professional community that can best serve children and youth who are deafblind. The discussion will cover the ways to build consensus and a common vision, the use of the construct of community of practice, the methods for working together in the creation of products and materials, and the various ways of supporting and improving shared work. S2.9 Educational Practice for People Who Are Deaf or Have Multiple Disabilities with Emelia Hernandez Payan, Marta Elena Ramirez Room: Orleans A This presentation shows the collaboration between civil society organizations (Perkins partners) and the Government of Mexico in the training of teachers in charge of students with multiple disabilities and deafblindness. The results of quantitative research on the educational practice of teachers working with this population at public Special Education schools in the State of Yucatan, Mexico during 2014-2015 will be shared. It exposes the knowledge of the teachers through nine indicators based in theoretical references for teaching, and the training needs on the use of compensatory methodologies, and the implementation of strategies. The conclusions include recommendations for the governments to update training for professionals in special education. S2.10 Deafblind Self-Advocacy: Realizing Your Rights with Chris Woodfill Room: Orleans B In exercising the right to live, breathe and function in this society, we are also granted the right to choose our own path toward a future. Maybe that future includes going to college, finding and sustaining a career or starting a family. As unique individuals, we must all learn to be our own best advocate, designing the future that we desire, and this presentation will address how that can be done. While, historically, the deafblind community has encountered roadblocks along this path toward higher education and career development, we can take what the past taught us and learn from it as we move forward toward a future with brighter possibilities. This presentation aims to demonstrate how we can learn from past mistakes, and how that process can foster growth and prosperity in both career and lifestyle. S2.11 UDL: At The Core of Implementing a Responsible and Sustainable Inclusive Process with Maria Bove Room: Grand II Universal Design for Learning (UDL) is a structure that supports all students, including those students with significant disabilities and deafblindness, in the general classroom setting. UDL also emphasizes cultural competence as an equalizer for social justice. This presentation will focus on the most successful structures found in cooperative learning and co-teaching. We will examine how these approaches come to life through partner learning, functional learning styles and in the educators' management, communication and teaching styles shifting from a disability to an ability paradigm. S2.12 Strategies for Supporting Learners with Deafblindness and Complex Communication Needs: Nonsymbolic Signal Dictionaries and Communication Portfolios with Susan Bashinski, Carol Darrah Room: Cape Cod In this session, presenters will demonstrate how teams can collaboratively create a communication portfolio (i.e., a notebook with photos and descriptions that depict a learner’s unique communication forms) and use these tools to support a learner’s communication and
participation methods. Presenters will also introduce intervention tools--tools which will help others better understand and more appropriately respond to a learner’s communication efforts. These practices will aid in promoting consistent communicative interactions throughout a learner’s day.
6:00 - 8:00 PM Opening Reception Co-sponsored by Perkins International and National Family Association for Deaf-Blind (NFADB)
Bass River Room and Hyannisport East and West (Second floor of hotel)
Monday, April 16
6:30 - 8:30 AM Breakfast
Bass River and Hyannis East-West (All are welcome)
Plenary Session: Grand Ballroom
Theme: Family Partnerships Moderator: Clara Berg, President NFADB
8:30 AM Announcements by Marianne Riggio
8:45 - 9:30 AM Plenary by Ed Bosso
9:30 - 9:45 AM Break
9:45 - 11 AM Panel Discussion
Perspectives on Family Partnerships
Panel Moderator: Steve Perreault
Panelists: Educator: Mary Vasquez
Individual with Deafblindness: Maricar Marquez Parent: DeJeanne Morris
Adult Service: John Mascia
11:00 - 11:15 AM Coffee Break
11:15 AM - 12:00 PM Workshops
M1.1 Collaborative Teamwork — Students, Families and School Community with Carmen Lucia Guerrero de Prado Room: Barnstable I This presentation will focus on the importance of equal participation among students, families and the professional and/or educational community. Each member of this team has their own individual role while also sharing in the larger collection of challenges, goals, fears, hopes, and triumphs. We get there faster, together. M1.2 Interveners: The Path to Professionalization with Linda Alsop, Christine Jay Room: Osterville A The importance of interveners for children and youth who are deafblind is becoming more widely accepted around the world. This presentation will describe the online Intervener Training Program, offered at Utah State University, which has been training interveners since 2008. A panel of these nationally-credentialed interveners will share their experiences and perspectives about their training, work and membership in the National Intervener Association. Other efforts toward professionalizing the intervener practice will be discussed, including national progress to establish intervener services as related services under IDEA legislation. M1.3 Touch, Bonding, and Relaxation with Holly Cooper Room: Osterville B This presentation will discuss the importance of touch between mothers or caregivers and their infants and young children with deafblindness. Issues that may interfere with touch and the bonding process will be discussed. We will also explore the benefits of massage for children with deafblindness. M1.4 Informal Functional Hearing Evaluation (IFHE) with Chris Montgomery, Adam Graves Room: Centerville A This presentation will address the Informal Functional Hearing Evaluation (IFHE). IFHE is meant to guide the teacher of the deaf and hard of hearing (TDHH), the teacher of the visually impaired (TVI), and the teacher of students with deafblindness (TDB) in determining which accommodations are needed in the classroom, home, and community environments to promote student access to information. In this presentation, we will discuss the ways that the IFHE can serve as a guide for attaining critical access and determining accommodations. M1.5 What’s So “Unique” About the Unique Learning System? with Wendy Buckley Room: Centerville B The Unique Learning System is an online, standards-based system that provides the necessary tools and materials to students with special needs so they may best access the curriculum. Differentiated materials are provided at three levels across six grade bands from pre-school to transition age. Instructional targets link academic content standards to curriculum content for students with special needs. This presentation will look at how the Unique Learning System is used across the Deafblind Program at Perkins School for the Blind. M1.6 Positive Touch Access: Invitation to Touch Leads to Self-Actualization with Susanne Morrow Room: Grand I
Over the past five to ten years there has been a major shift in the way touch techniques are labeled and used in the US, specifically when used with deafblind adults. For decades, research in the field of deafblind education has indicated the critical aspect of touch in early cognitive and communication development. This presentation proposes a shift in our approach to working with these often controversial methods, and discusses the benefits of positive touch access and more intentional parent education on the topic. M1.7 Using the Communication Matrix Assessment and Community to Improve Communication in Individuals Throughout the Americas who are Deafblind with Alexandria Cook, Gloria Rodriguez Room: Orleans A The Communication Matrix (www.communicationmatrix.org) is a web-based assessment of expressive communication for individuals of all ages who are at the very earliest stages of communication development and who may not use speech to communicate. It is available in seven languages, including Spanish. This free service offers customized “just in time” and “just for me” problem-solving skills, engaging both professional and nonprofessional stakeholders in discussions of appropriate assessment and intervention methods as related to the development of communication skills. In this presentation, we will demonstrate how to use and interpret the communication matrix assessment and community. M1.8 Culture Encounters of the DeafBlind Kind: An Immersion with Katherine Gabry, Allen Reposh Room: Barnstable II Culture Encounters of the Deafblind Kind was developed by the DeafBlind Community Access Network of New Jersey, Inc. This presentation will explain the activity involved with the program, which has been likened to “speed dating for learning about deafblind culture.” Participants will be broken into small groups (no more than four per group), and led by deafblind individuals in a discussion that covers a variety of their daily life experiences. Participants will be asked to answer a question following each discussion, and once the question has been answered, the leader poses another question, and the process is repeated. Deafblind leaders add the “deafblind perspective,” as applicable. Participants will spend eight minutes in each group before rotating to the next group, where different experiences and questions are posed by another deafblind individual. M1.9 The Development of a Deafblind Team: A Collaborative Partnership to Meet Complex Student Needs With Michelle Schmidt, Tanya Margison, Annie Lehbauer, Rachel Schroots, Kendra Anderson, Michele Kohut-Jones Room: Grand II This presentation will present the deafblind team, which is comprised of an inclusive education teacher, a teacher of the deaf or hearing impaired, a teacher of the visually impaired, a deafblind intervenor, occupational and physical therapists, an augmentative communication specialist, the director of instruction for student support, and a representative from the Provincial Outreach Program for Students with Deafblindness. They will demonstrate how the team functions to implement educational programs for 12 students in their district. M1.10 Early intervention Home Visiting Practices with Families of Diverse Backgrounds with Deborah Chen Room: Cape Cod
This session will identify and explain various routines-based practices in early intervention home visits that serve as an effective way for collaborating with families of diverse backgrounds and addressing the learning needs of their young children (birth-36 mos.) with deafblindness. Routines-based intervention is recognized as an evidence-based home visit practice that benefits very young children with disabilities and their families. This session will draw from a review of relevant early intervention research and the presenter’s personal experiences. M1.11 Where Am I? How to Utilize Tactile Maps with Shannon Wright Room: Barnstable III We will begin with a brief overview of tactile maps. The participants will engage in an interactive presentation which introduces and demonstrates how to use a variety of tactile maps. The discussion will also explore the structure of tactile mapping and how to utilize space effectively as well as where tactile mapping can occur. We will discuss specific locations where tactile maps have been useful, and how they communicate information to the map user. Lastly, the participants will work together in small groups to create tactile maps that will then be shared and discussed. We will choose a few of these maps to discuss as a large group. M1.12 Thoughtful Implementation of Technology for Children with Deafblindness with Elizabeth Hartmann, Patti Weismer Room: Orleans B This interactive session introduces three theoretical frameworks and models that have been successful in integrating technology with learning environments: a) universal design for learning (UDL) framework, b) SETT framework, and c) SAMR model. The discussion will explain how these frameworks and their various technology tools can be an effective element in teaching children and youth with deafblindness.
12:00 - 1:30 PM Lunch Break
Bass River Room, Hyannis East and West, Bogie’s
1:30 - 2:15 PM Workshops M2.1 Orientation and Mobility Skills for Students with Deafblindness with Carolina Gonzalez Room: Osterville B Participants will learn strategies for teaching O&M skills at home, in school, and around the community. Participants will learn alternate communication strategies and different approaches to working in tandem with interpreters and interveners. Basic sign language related to O&M, as well as the use of adaptive mobility devices, will also be covered. M2.2 Infant Toddler Classroom: A Model for Parents of Low Vision, Blind, and Deafblind Children with support of Social Workers, TVI/TDB/O&Ms and Volunteers with Susan DeCaluwe Room: Centerville A Come learn about our classroom. Once a week, we meet with the families of our deafblind students to offer relevant information about visual impairment. Our team, consisting of parents of deafblind students, social workers, siblings, one-on-one volunteers and teachers all come together to provide a predictable weekly routine for the deafblind children and their families.
M2.3 Process of Communication of Children with Deafblindness with Fernanda Falkoski Room: Barnstable I This presentation will explain the various communication processes using alternative communication resources that are practiced by individuals with deafblindness. In this given study, each mediator practiced their own unique way of communicating with the child. Presenters will discuss the various actions and reactions that were observed throughout the communication process, the methods through which the child “discovered” the alternative communication modes, the various interpretations that can be deduced from the child’s reaction to communication modes, and the fundamental role that caregivers and relatives play during this developmental process. M2.4 Empowering the Deaf-Blind: Accessing Information through Touch with Marilyn Trader, Maricar Marquez Room: Centerville B This presentation is designed to increase the awareness and understanding of touch signals that have been used within the deafblind community in the United States and all over the world. Touch signals, which have been utilized by individuals who are deafblind as well as the professionals working with them, have been in practice for many years. Touch signals is a generic term which refers to a system of signals presented through touch or contact, with various articulation locations on the receiver’s body, to provide visual, environmental and social feedback information. These signals provide the deafblind person equal access to the environment, which serve to empower him or her to make informed decisions. M2.5 Utah’s Journey in Obtaining Services for Students who are Deafblind with Debbie Sanders, Susan Patten, Erin Farrer Room: Barnstable II The purpose of this presentation is to share unique examples and strategies in practice in the state of Utah, where there is a unique and diverse population of deafblind students in need of services. The discussion will touch on the history of Utah’s deafblind services and mobilization of financial resources for these services, as well as providing an overview of the service delivery model, various past and ongoing projects for this population, and methods for collaboration and planning to support the provision of these services. M2.6 Deafblind Specialist Teacher Training in Ontario with Lynne Osasuyi, Dan Maggiacomo, Heather Hickman Room: Orleans A The province of Ontario has a regulated system, Additional Qualifications (AQs), as one form of professional learning for teachers. The program is designed by teachers for teachers to reflect the experience and pedagogy of the teaching profession in Ontario. Through these explorations, candidates strengthen professional efficacy by gaining in-depth knowledge, refining professional judgment and generating innovative solutions for practice within the field of deafblindness. M2.7 New Trends in Technical Assistance: Using Distance Mentoring to Increase Efficiency and Improve Child Outcomes with Robin Greenfield Room: Orleans B This presentation will provide information on a distance mentoring model that is being used by the Idaho Project for Children and Youth with Deaf-Blindness. The model is designed to provide
technical assistance to teams, particularly in rural areas, where staff may lack training or direct experience with students who have more complex disabilities. The model combines common technological elements to further assist teachers, paraprofessionals, additional support personnel, and families in working with these students. M2.8 Sharing and Growing Others Through Mentorship with Theresa Merrifield, Kelly Patterson Room: Grand I Founded in 1989, DeafBlind Ontario Services in Canada is a not-for-profit organization that helps individuals living with deafblindness increase their independence and improve their quality of life through specialized services. This presentation will demonstrate how DeafBlind Ontario Services has developed and implemented a mentoring guide called Share and Grow: Supporting the Collaboration Between Mentors and Intervenors. M2.9 Crucial Collaboration: Exploring the Deafblind Educational Service Model with Genevieve Francoeur-Anderson, Silvia Correa-Torres Room: Cape Cod Combined vision and hearing loss can cause severe limitations in the development of communication and language skills in our students living with deafblindness. This presentation will examine the ways that our teams of teachers, parents, and service providers alike, dedicated to enhancing these critical developmental skills in our students, can strive to practice more balanced, transparent collaboration. We will examine the ways that this educational service model relies on steadfast teamwork and communication. M2.10 Teacher Training and Professional Training to Support the Inclusion of Students with Deafblindness and Multiple Sensory Disability in the City of Sao Paulo with Karina Maldonado, Shirley Maia, Vula Ikonomidis Room: Barnstable III A 180-hour university extension training course was organized in Sao Paulo to train educational interpreters to become guide interpreters to support students with deafblindness. Evaluations from the participants of this course demonstrate the importance of these trainings to our service model, as we continue to push for extensive inclusion of students with deafblindness and multiple sensory disabilities. This presentation will discuss the shared experiences of the participants in this partnership, aligning the Ahimsa Educational Association for Multiple Disabilities and Grupo Brazil with the municipal schools of Sao Paulo. M2.11 International Collaboration to Establish Countrywide Services for Learners with Deafblindness: A model for Systems Change Dmitry Polikanov, Michael Delaney Room: Grand II This session will outline the visionary design Connections has developed to create a national system of quality education and teacher training for learners who are deafblind throughout Russia. The presenters will illustrate how Connections is collaborating with Perkins International to implement live and virtual teacher training, program development and support to meet the challenge of reaching the most underserved and vulnerable children and young adults in all regions of Russia.
2:15 - 2:30 PM Break
2:30 - 3:15 PM Workshops
M3.1 Identifying and Serving Academic Students with Deafblindness in Educational Settings in the United States: An Evolving Challenge for Our Field with Robbie Blaha, Matt Shultz Room: Osterville A This presentation will discuss the rising needs of our students with deafblindness and some of the most effective strategies in practice to serve this population. We will discuss the elements of the deafblind learning style, and how these elements are reflected in daily routines and ways we can continue to improve our methods for identifying the needs and providing service to this unique population. M3.2 A Classroom that is Open to Families with Ana Lilia Alvarez Room: Osterville B This presentation will bring participants into one teacher’s unique classroom, where mothers were welcomed to be with their children at school, to share in their learning experience and become a part of the daily classroom lifestyle. Together, we’ll explore the ways this teacher made space in her curriculum to honor and mediate magic learning moments with these mothers and their children. The discussion will touch on the various ways that these mothers learned and developed their own understanding of communication, sensory and motor adaptations and mealtime strategies alongside their sons and daughters. We’ll explore the dynamic, valuable conversations between families, teachers and school administrators which have evolved from this extraordinary experience. M3.3 Integration of the Arts in the Education of Children who are Deafblind with Catherine Nelson, Kristen Paul, Cathy Cartwright, Paige Furbush Room: Centerville A Quality integration of the arts in education has been found to positively impact all aspects of development, however, children with sensory impairment and multiple disabilities have limited opportunities to engage with and learn through the arts. This session will describe a new approach used in a deafblind teacher preparation program, more seamlessly integrating arts into the education of these students. Together, the participants of this session will explore a relevant case study and various examples of the benefits of using this model in our classrooms. M3.4 Wow, that Sounds Familiar: Parent-Child Playgroups for Families of Children with Deafblindness; Early Intervention: Parent-Child Playgroups with Julie Maier Room: Centerville B This discussion will present the shared experiences of a three-year collaboration between California Deafblind Services (CDBS) and a local early intervention program for deaf students, implementing biweekly playgroup meetings between parents and their children with deafblindness. Facilitators from CDBS and the Center for Early Intervention on Deafness (CEID) provided information, modeling and support to a diverse group of families with children with unique developmental profiles and support needs in an environment that allowed for discussion, demonstration and practice of new skills. Details about the planning, implementation and the anticipated, as well as unanticipated, outcomes of the playgroup sessions will be shared. In addition, resources for developing similar early intervention support in other communities will be available.
M3.5 Parent Experiences of Early Intervention and Play Opportunities for their Deafblind Child with Helen Barrance Room: Orleans A This presentation will examine the results from this study, comprised of interviews with parents with very young deafblind children with a range of other additional needs. In discussing the findings, we’ll explore the needs of both the children and their families and how mainstream playgroups, specialist groups and interventions meet these needs in varying degrees. We will address where gaps in the provision of services may exist and begin to unpack the idea of parent partnership. This session will also discuss the ways that educators and service providers can continue to listen more closely to parents, considering the complex social and emotional needs of the child, parent and family unit. M3.6 A Longitudinal Case Study of a Young Man with CHARGE syndrome: The Evolution of his Communication Skills and Independence Over the Course of 15 years with Susan Bashinski Room: Orleans B This presentation will follow the arc of 15 years of care with Robert, an 18-year-old male with CHARGE syndrome and deafblindness. Tracing progress made over this span of time, discussions will focus on this common need of learners with deafblindness to utilize different communication modes for expressive and receptive purposes. M3.7 EIEIO – Effective Initiatives for Early Intervention Opportunities for DB Infants and Toddlers with Susie Tiggs, Stephanie Walker Room: Barnstable III E-I-E-I-O? Yes! Effective Initiatives for Early Intervention Opportunities! Let’s talk about intervention and assessment strategies for working with infants and toddlers with deafblindness. This presentation will also touch on the policies and procedures for working collaboratively with ECI to meet the IDEA Part C requirements of this unique population. M3.8 Train from Anywhere: Intervener Training with Beth Kennedy Room: Cape Cod With adequate training, interveners provide access for people who are deafblind. Participants in this session will learn about an online intervener training program offered through Central Michigan University (CMU). This session will cover training procedures, an overview of program content and information on how to register. The presentation will include video clips and student work samples to provide a thorough and rich understanding of the depth of the Central Michigan University Intervener Training Program. M3.9 Fundamentals of Pro-Tactile with Sarah Morrison, Thonda Voight Campbell, Lauren Lieberman Room: Grand II This workshop will provide an overview of ProTactile: the Deafblind Way, including its philosophy, culture and language. It will emphasize approaches that are culturally appropriate within the deafblind community, dismantle old views of tactile communication, address the etiquette involved, and enable participants to become more familiar with ProTactile.
M3.10 A National Transition Follow-Up Study of Youth Identified as Deaf-Blind with Jerry G. Petroff, Nayda Pancsofar Room: Barnstable I This presentation will include descriptive and correlated statistics that show new findings in transition planning, the implications of secondary education experience on post-academic success, and areas in which the field of deafblindness can continue to promote success and strong quality of life for youth with deafblindness. M3.11 Implementing Behavioral Competencies for Performance Management with Alyssa Young Room: Barnstable II In 2014, the Ontario Ministry of Community and Social Services in Canada and the Intervenor Services sector agreed to jointly undertake long term, strategic initiatives that will provide training opportunities for skills enhancement and the development of human resource best practices to support the delivery of Intervenor Services in Ontario, Canada. One of the initiatives was to develop behavioural competencies for the Intervenor Services sector. The competency model outlines behavioural indicators for Intervenors to achieve and to grow their career in Intervenor Services. This presentation will focus on DeafBlind Ontario Services’ journey in implementing the behavioural competencies into human resources practices to manage and develop the performance of Intervenors. M3.12 Family-to-Family Communities: Engaging Families via Distance Technology to Build Relationships and Support One Another with Carol Darrah, Edgenie Bellah, Patti McGowan, Pam Kissoondyal Room: Grand I The Family-to-Family Communities (F2FC) project is a partnership between the National Family Association for Deaf-Blind (NFADB), the National Center on Deaf-Blindness (NCDB), and State Deaf-Blind Projects. F2FC offers a unique, culturally relevant way for families to connect via monthly conference calls where they can share information, resources and offer support to one another in a format that fits families’ busy lifestyles. In addition to discussing the structure of the F2FC project, this session will also share valuable participant feedback.
3:15 - 3:30 PM Break
3:30 - 4:15 PM Workshops M4.1 Descriptive Statistical Study on the Reality and Geographical Location of the People who Present/Display Deafblindness in Santiago, Chile with Oriana Donoso, Felicia Gonzalez Room: Barnstable I This session will present the findings from a study evaluating the reality and geographical location of the people who present deafblindness and multiple educational disabilities in Santiago. In addition to explaining the nature and goals of this study, the discussion will aim to present the plan for a more structured database of deafblind individuals of a certain area, and the ways that their priority needs can be identified and services provided when and to what extent they are required.
M4.2 Supporting Educators to Use Effective Instructional Strategies with Sam Morgan, Tracy Luiselli, Jennifer Grisham-Brown, Peggy Malloy Room: Osterville A While there are many instructional strategies that promote learning and development in children with deafblindness, educators may be unaware of these methods or lack the training to implement them in their classrooms. This presentation, designed for technical assistance providers and others who offer training and support to educators, will present practical tactics for increasing the knowledge and skills of teachers and service providers who work directly with children who are deafblind. M4.3 Model for Comprehensive Statewide Services for Individuals Who are Deafblind with Larry Rhodes Room: Barnstable II The Community Outreach Program for the Deaf-New Mexico (COPD-NM) developed a statewide program for delivering comprehensive services to individuals who are deafblind. This presentation will share the history of the development of these statewide services while emphasizing the importance of securing resources, developing expertise, integrating effective practice into the model and the ever-growing importance of program evaluation. M4.4 The Impact of Grief and Child Loss on the Family of Children with Deafblindness with Megan Cote, Myrna Medina, Molly Black Room: Barnstable III This presentation is about peer-to-peer training on grief support. The initiative launched a national online peer-to-peer grief group which meets virtually, two times per month, for a total of 10 sessions. The purpose of the group is to provide emotional support, education around death and dying, and normalization of the grief process in a shared, supportive community. The training focuses on understanding the impact of grief on a family unit, what it takes to heal and the value in staying connected to the deafblind community, despite dealing with loss. M4.5 Systematic Instruction: Training and Implementation Within a School-based Deafblind Program with Caleb Davis, Zachary Bird, Sharon Stelzer, Marguerite Tibaudo Room: Osterville B Systematic instruction (SI) is a collection of evidence-based teaching procedures that has been effective in teaching a wide range of skills across various populations. The purpose of this presentation is to review the process and procedures utilized in the recent introduction of SI within the Deafblind Program at Perkins School for the Blind, and demonstrate its effect on student learning outcomes. Specifically, presenters will review the process of the collaborative development and implementation of program-wide staff trainings. M4.6 Education of the Person with Deafblindness in Buenos Aires Province-Argentina with Delia Gongora Room: Centerville A In Buenos Aires, since 2004, the special education office has been taking action to reach and serve children with deafblindness. In 2007, the office started distributing a specific survey to learn about the deafblind population (ages, diagnosis, and school years). This presentation will discuss the ways that the results from this survey have the potential to revolutionize the way we identify and provide services to the population of deafblind student in this region.
M4.7 Person Centered Planning: Opening Windows for New Opportunities for Children and Adults with Deafblindness with Sandra Warren, Andrea Blackwood Room: Centerville B Person Centered Planning is a way to ensure that everyone has a life plan intact, as well as goals to achieve that life plan. This approach to planning is designed to shift the focus from a deficit-based approach to a strength-based one by developing transition and life plans that enhance an individual’s quality of life. The session will explore the values, purpose, and benefits of the PCP process. Online resources will be used to describe the process and highlight the various types of maps, and video clips of PCP in action. M4.8 Deaf-Blind Employment Mentoring: A Structured Approach with Christopher Woodfill Room: Orleans A This presentation will discuss a curriculum focused on a structured approach to employment mentoring for deaf-blind individuals, which was implemented at the Helen Keller National Center through the Professional Learning and Leadership Institute. Through referencing supportive case studies on the topic, the presenter will explain the rationale behind this approach and the ways it can be replicated in communities around the globe. M4.9 The Science of Young Adult Brains: It's Never Too Late to Become an Effective Communicator with Maurice Belote Room: Orleans B It is critical that every young adult, graduating from their respective educational system, enters the community with an effective expressive and receptive communication system. Current brain research suggests that neuroplasticity and brain maturation allow for the learning of all skills well beyond childhood, including those skills specific to communication. This session will include an overview of brain science specific to young adults, the distinction between language and communication and strategies for advocating on behalf of individuals in need of intensive communication interventions. M4.10 Parent-School Collaboration and Conflict: Experiences of Parents of Children with Deafblindness During the IEP Process with Silvia Correa-Torres, Sandy Bowen, Tracy Mueller, Lanya McKittrick Room: Cape Cod Research has demonstrated that when parents are involved in the education of their children with deafblindness, positive outcomes are seen across all grade and ability levels. The purpose of this study was to explore the experiences of parents with children with deafblindness, taking a closer look at parent-school collaboration, potential conflict, and the unique challenges these parents experience during the IEP process. Outcomes from the study will be examined, and strategies for reforming our process, in hopes of increasing parent satisfaction and parent-school partnerships will be discussed. M4.11 Collaborating for Success: Vision Professionals and American Sign Language Interpreters Working Together! with Shannon Wright Room: Grand I
We will start this session by identifying and defining the roles of the individuals – vision professionals and American Sign Language interpreters – that we will discuss during the session. We will address their general work environments and the key terms used by each group in their respective professions. We will examine the ways that each group receives certification in their field as well as the resources in place for connecting parents and schools with the professional services they need. We will touch on specific examples that demonstrate the tools and information that vision professionals need from their sign language interpreter colleagues, and visa versa. Lastly, we will open up the conversation to the audience to listen to shared experiences or situations they have encountered so together we can address alternatives and best practices on this front. M4.12 Transitioning from School to Adult Programs: Ideas for Supporters of Adolescents who are Deafblind and Have Intellectual Disabilities with Laura Rocchio, Marilyn Trader Room: Grand II We know that the lifestyle of a child in school is supported and directed by adults, so how do we support our adolescent students as they make the leap into adulthood? How can we better equip them with the tools they’ll need to shift into their next phase of life, with new responsibilities and routines? This presentation will highlight the successful collaboration that is evolving between a family team, the state deafblind project and vocational rehabilitation services. Their plan is to offer a week-long intensive vocational experience to students, which can help them identify preferred jobs, practice appropriate adult decision-making skills, determine adult recreational activities of interest, and utilize individualized communication systems at home and in the community. Teaching and support strategies utilized for such training courses will be shared.
Dinner on your own Monday night.
8:30 PM Comedy Night with Rene Pellarin
Tuesday, April 17
6:30 - 8:30 AM Breakfast
Bass River and Hyannis East-West (All are welcome)
Plenary Session: Grand Ballroom
Theme: To be Included: What does it Mean? Moderator: Carolyn Monaco
8:30 AM Announcements by Marianne Riggio
8:45 AM Plenary by George Stern
9:30 - 9:45 AM Break
9:45 - 11 AM Panel Discussion
Perspectives on Inclusion Panel Moderator: Tom Miller
Panelists:
Educator: Carmen Lucia Guerrero de Prado Adult Service: Bonnie Heath Family: Nancy Hartshorne
11:00 - 11:15 AM Break
. 11:00 AM - 3:00 PM Poster Sessions
P1 Deafblind Services and Systems Change: One State’s Experience with Brook Barnhill Given the current efforts to enact the Cogswell Macy Act, it is important to take a look at state models and systems of training, funding and support for deafblind services. Utah has funded the Utah Schools for Deaf and the Blind for over 20 years and serves as a leading model to examine. Throughout the presentation, we will discuss how professionals in this field are trained, supported and evaluated. We will also look at the way that parents and family members’ roles can be assessed and modified to best serve their son, daughter, or sibling with deafblindness. P2 Communication Portfolios: Giving a Voice to Children with Complex Communication Needs with Carol Darrah, Martha Veto, Christine Spratling Children with complex communication needs may use unconventional methods to express themselves and people that do not have prior exposure to this population may struggle to understand the child’s communication attempts. By using a Communication Portfolio, a portable, easily-accessible notebook that includes photos and descriptions of the child’s unique expressive and receptive communication messages, members of the community will be better equipped to understand and respond to the child. This poster will highlight the steps to create a Communication Portfolio, how and when to use it and its many benefits. P3 Culture Encounters of the Deafblind Kind: An Immersion with Katherine Gabry, Allen Reposh Culture Encounters of the Deafblind Kind was developed by the Deafblind Community Access network of New Jersey, Inc. The activity has been likened to “speed dating for learning about deafblind culture.” This poster will demonstrate how the activity is put into action in small groups, led by deafblind individuals, to discuss typical daily life routines and encounters. The activity continues to serve as a shared learning experience for the deafblind community and their peers.
P4 Introducing the DeafBlind Community Access Network of New Jersey, Inc. with Katherine Gabry The DeafBlind Community Access Network of New Jersey, Inc. (DBCANNJ) is a nonprofit organization that has been in existence since November 2015. This presentation will discuss the goals of the organization as they focus on providing educational and employment opportunities, cultivating community and social networks, and encouraging members to create innovative solutions to living with the combined loss of hearing and sight. At its core, the DBCNNJ aims to inspire its members of the deafblind community to achieve a higher level of independence, productivity and social equality which in turn can create the highest possible quality of life. P5 Utah Schools for the Deaf and the Blind takes education to State Legislators with Debbie Sanders, Susan Patten, Erin Farrer This poster will show how Utah Deaf-Blind Services interacts with state-elected government officials and legislators to organize resources and services across the state. This poster will show the positive impact on raising awareness of students’ educational needs and the importance of funding when bills related to special education and sensory loss are presented. P6 Trends in Research and Journal Publications in the Field of Deafblindness with Mary Ann Demchak, Chevonne Sutter Across the field of education there is a wide variety of ongoing and emerging research and the publication of new, innovative studies. This session will describe the trends of types of articles published in targeted journals in the field of deafblindness from 2012 through 2016. This analysis, which indicates a lack of in-depth research topics on deafblindness, is part a larger study conducted to determine the spectrum of research being conducted in the field of special education across IDEA disability categories. P7 Assessment with Susan Bruce and Brent Stutzman This poster will provide guidance about how to conduct ethical and effective assessments of children who are deafblind and prelingual. It will include a section on Venn’s (2007) guidelines for selecting a formal assessment instrument (such as selecting instruments with a wide sample of behavior to capture small increments of development). Learner characteristics and the state of evidence for assessment practices will be shared and discussed. P8 Communication Rights and Intervention with Susan Bruce, Susan Bashinski This poster will present the Communication Bill of Rights developed by the National Joint Committee on the Communication Needs of Persons with Severe Disabilities (NJC). Handouts about recent NJC publications and advocacy products will be provided, as well as resources that define and explain specific rights and best practices in serving children who are deafblind. P9 National SSP Survey Results with Katherine Gabry, Mark Gasaway In the fall of 2015, a National SSP (Support Service Provider) Task Force was established. This grassroots effort, led by deafblind individuals and supported by Support Service Providers, as well as a few agency and organization representatives, sought to open a discussion regarding a national agenda to forward the SSP cause. One of the goals of this work – to evaluate and assess SSP skills and training to develop national standards, a national curriculum and a national certification – is the focus of this poster session.
P10 Assessment of Functional Vision on Learners with Deafblindness; the Kenya Experience with Richard Ndungu Most of the available assessment tools have not yet been adapted to meet the needs of learners with deafblindness in developing countries, which leads to under assessment and other negative impacts on effective education programming. The objective of this study is to align education programming to functional visual ability of learners with deafblindness. P11 Perspectives on Emotion and Connections to Deafblindness with Brent Stutzman Room: Osterville B For the individual who is deafblind, a dual-sensory disability may profoundly impact their daily life routine, which may also impact their emotional condition. This presentation suggests that educators should conceptualize emotions not as an individual’s personal experience, but rather as being co-constructed and socially mediated across relationships. As such, it becomes imperative that individuals who are deafblind are able to build supportive and trusting relationships that can contribute to a healthy emotional balance in their lives.
11:15 AM - 12:00 PM Workshops T 1.1 Building a Center of Excellence: A Model to Develop Master-Level Teachers with Martha Majors, Ed Bosso Room: Centerville A As Perkins School for the Blind strives to become a center of excellence, they have been challenged by the low availability of master-level teachers. This presentation will share a teacher-mentor model designed to train young teachers at the post-preservice level to a level of high expertise in their field. Perkins School for the Blind aims to become a center of excellence by sustaining these relationships over the next several years as they train master-level teachers to work with other teachers throughout the world. T1.2 Impact of Perkins’ Spanish Website as a Resource for Families and Professionals in Latin America with Paula Rubiolo Room: Barnstable II In 2010, Perkins International developed a website, written entirely in Spanish, used to consult, find and share information, exchange opinions and ideas. In 2013, a virtual classroom was incorporated to the website, enabling hundreds of professionals and family members to receive training. This presentation will look at and share the magnitude of impact in the region and the way that the site’s development has empowered families and educational professionals, and extended these opportunities to more members of the local community and governments in a formal, sustainable manner. T1.3 Experiences of Families Raising a Child Who is Deafblind and Teacher Response to their Shared Experiences with Donna Snyder, Kim Zeigler Room: Grand I In using the photovoice method with short digital videos, this presentation will explore the experiences of families raising a child who is deafblind and the teacher response to those shared experiences. Family photovoice interviews uncovered five overarching themes: medical
positive descriptions, family and community likes/don’t likes and parents’ love, and we aim to address these concepts during our discussion. T1.4 Inclusive Education for Children with Deafblindness and Multi-Sensory Impairment with Naomi Lugoe Room: Centerville B The session explores a two-step inclusive education model to make inclusion and education possible for children with deafblindness. Despite the fact that this approach is low cost and 3.6 times cheaper than other options in Tanzania, other inclusive education options in Tanzania fail to adapt the system to their program. Hopefully, through raising awareness, the educational model will gain visibility and attention. T1.5 Providing Effective Orientation and Mobility Services for Individuals with Deafblindness with Edgenie Bellah, Robbie Blaha Room:Grand II This session presents a collection of tools and strategies that Orientation and Mobility Specialists (OMS) can use in the evaluation and development of their student’s auditory skills. We’ll examine ways to build strong working relationships with the student's audiologist, specialist for the auditory impaired and the speech and language pathologist (SLP) as we work to better understand the environmental hearing needs of our students and clients with a dual sensory loss. T1.6 “Hear and See” the Voice of the Deafblind: Individuals with Deafblindness go Under-Identified and Under-Referred to the Nationwide Networks of State Deafblind Projects with Michael Norman, Julie Durando, Robin Greenfield, Molly McLaughlin, Rose Moehring Room: Osterville A Despite growing numbers of children and youth with deafblindness and their need for support, this population continues to be under-identified. This presentation will highlight the successful and not-so-successful outreach efforts used across five state deafblind projects. The discussion will address the findings of this research, which represents data from considerably diverse projects, with varying geographic locations, longevity, and state-wide focus. T1.7 All Eyes on Eye-Gaze with Wendy Buckley Room: Orleans B This presentation will look at the ways eye-gaze technology can be used with children with visual impairment and complex needs to gain an insight into their visual skills. Can they track and fixate on images? Which colors, shapes, and sizes of images do they attend to? Can they discriminate between images? To answer these questions, we’ll look at the ways that children in the Deafblind Program at Perkins School for the Blind are using eye-gaze technology and discuss methods for interpreting and analyzing the data so we can better integrate our findings into the student’s educational plan. T1.8 Working Together to Support Families with Megan Cote, Patti McGowan, Sheri Stanger Room: Osterville B This presentation will explain the distinct roles of the National Center on Deaf-Blindness, the CHARGE Syndrome Foundation and the National Family Association for Deaf-Blind. We’ll describe how their work supports families in accessing the knowledge and services they need to
promote better outcomes for their children who are deafblind. Participants in this session will learn what each organization offers and how to take part in the training and connections they provide.
12:00 - 1:30 PM Lunch Break
1:30 - 2:30 PM Panel Discussion
Grand Ballroom
Research in Deafblindness: Current Status and Future Directions Panel Moderator: Susan Bruce
Panelists:
Assessment: Catherine Nelson Communication: Susan Bashinski
Families: Silvia Correa-Torres Transition: Jerry Petroff Education: Vula Ikonomidis
2:30 - 2:45 PM Break
2:45 - 3:30 PM Workshops
T2.1 Developing Early Language Skills of Children with Deafblindness and Multiple Disabilities through Social Play with Amal Ezzat Room: Centerville A This presentation aims to identify how we can better develop the early language skills of children with deafblindness and multiple disabilities through social play. We will highlight the most challenging aspects of initiating and teaching early language skills and how we can continue to develop those aspects through social play. T2.2 Facilitating Inclusion into Physical Education, Recreation, and Sport for a Lifetime with Lauren Lieberman, Melanie Perreault Room: Centerville B This presentation will share a collection of tools needed to ensure high-quality physical education, sports and recreational experiences for children who are deafblind. We’ll address the ways that, through establishing this complete set of foundational skills in physical activity, our students can cultivate lifelong valuable recreational opportunities which lead to a higher quality of life. T2.3 Integrative Self-Breast Examinations for Blind and Deaf Women with Olga Makhubela-Nkondo Room: Osterville B Early detection of breast cancer among the blind and deaf is possible through breast self-examination, however, the brochures, books and audio tutorials on this topic are prepared for the sighted and hearing communities. This presentation will address the need to simplify and increase accessibility to self breast examination instruction for women who are blind and deaf.
Throughout our discussion, we’ll also examine the best tactics for overcoming barriers in health care, rehabilitation, education, employment, and support services for the deaf blind so our communities can better enable them to succeed and flourish. T2.4 Quality Indicators for Assessing Services for Students with Significant Support Needs Including Deafblindness with Gina Herrera Room: Orleans A Services for students with severe disabilities can be improved by using the Quality Indicators (QI) rubric of evidence-based practices, developed by the Colorado Department of Education. In this presentation, we will discuss the application process, Quality Indicators assessment process, development of improvement goals and project results. T2.5 Engaging Deafblind People in Drama From Workshop to Performance with Simon Allison Room: Orleans B The subject of drama can be both overwhelming and daunting for a deafblind person. In this presentation, we'll address the importance of cultivating drama for deafblind people by identifying the exciting and enjoyable elements of this experience. We’ll look at the skills required by specialists such as interveners and the ways they can adapt their workshops to gain the full attention and inclusion of their deafblind participants. The presentation will also explore potential theater opportunities, such as stage construction, available to the deaf blind individual. T2.6 Clarifying the Roles of the Interpreter, Intervener & Support & Service Providers with Katherine Gabry, Linda Alsop, Susanne Morrow, Sally Prouty Room: Grand I Interveners, interpreters, and Support Service Providers (SSP) are all trained professionals that provide their deafblind students and clients with valuable access to the greater community. As potential overlap of these roles can occur during the service provision process, this presentation will define each role from both the professional and consumer perspective. We will leave space for an interactive Q&A at the end of the session. T2.7 Supporting Availability for Learning: Student-Centered Assessment and Intervention with Christopher Russell Room: Barnstable II The majority of children and youth with deafblindness have additional physical, sensory, cognitive/developmental and health challenges which can have a significant impact on their access to learning. This session will provide an overview of the impact of deafblindness and multiple disabilities on this learning experience. In addition, the presenter will share the assessment tool he designed, “Assessment of Biobehavioral States: Supporting Availability for Learning for Students with Multiple Disabilities including Deafblindness & Profound Intellectual & Multiple Disabilities,” and its benefits. T2.8 Challenges of Medical Transitions and Evidence-Based Practices for Supporting Transitions from Pediatric to Adult Medical Care for Young Adults who are Deafblind and Have Complex Medical Needs with Maurice Belote Room: Grand II Transitioning from child and adolescent-focused healthcare systems into healthcare systems designed for adult care can be a cause of great worry and stress. This session will explore ways
in which educators can be more actively engaged in the medical healthcare transition process and will include the multiple perspectives of consumers, families, medical providers and educational team members. T2.9 The Student-Directed IEP Process: Increasing the Meaningful Involvement of Students with Deafblindness in Developing High Priority Goals for School and Life with Julie Maier Room: Barnstable II An individual Education Plan (IEP) is more than just an annual meeting; it’s a multi-faceted process that guides the development of educational goals, services and provides supports for students with disabilities. This presentation will promote the institution of a student-directed or, student-led, IEP process with students who are deafblind, regardless of ability level or support needs, through the integration of thoughtful planning and creative use of individualized adaptations. T2.10 Being Open to Surprise: Fostering New Possibilities in our Interaction with Deafblind Persons by Examining Assumptions About Voice and Power with Barbara Miles Room: Cape Cod The presentation will take a fresh look at the ways in which unacknowledged power differences between deafblind persons and partners can skew our interpretations and limit our interactions with one another. In the case of deafblindness, the simple lack of access to sensory information in the environment and a common language can have a profound impact on the power dynamics in conversations and relationships. We’ll examine these dynamics and suggest ways to move forward with a more balanced approach.
3:45 - 4:30 PM Break
4:30 - 5:30 PM Focus Group Discussions D1 Impact of Learners with Special Needs on Deafblind Services with Denise Watson-Jarigen, Alexandra Calbay-Martin, Brenda Roznowski Room: Osterville A This group discussion will address the key pillars of providing service to individuals with deafblindness and other special needs, as they apply to families, consumers, educators, and the rehabilitation worker or service provider. D2 Communication Methods a Barrier to Inclusive Education in Malawi Room: Osterville B with Ezekiel Kumwenda Since human rights pluralism in Malawi, many strategies have been implemented to help align interest groups to the resources and services that could meet their needs. Education is among the most important of these elements, however, participation and attendance by individuals in need dwindled as a result of poor communication. This presentation will address the government’s concerted efforts to realign and reconnect deafblind learners and peers to the educational services and opportunities they required to achieve a more independent lifestyle. D3 Being Open to Surprise: Fostering New Possibilities in our Interaction with Deafblind Persons by Examining Assumptions About Voice and Power
with Barbara Miles Room: Cape Cod This will be a discussion following Barbara Miles’ presentation topic.
Additional discussion topics to be determined by participant survey.
5:30 PM Documentary Film Presentation
Living in Deaf-Blindness Moderated by Naoyuk Okochi, Mari Morishita
Grand I
5:45 PM Business Meeting – Network of the Americas
All are welcome!
Grand II
Wednesday, April 18
6:30 - 8:30 AM Breakfast
Bass River and Hyannis East-West (All are welcome)
Plenary Session: Grand Ballroom
Theme: Measuring Success Moderator: Andy Fisher, Executive Director, Lavelle Fund for the Blind
8:30 AM Announcements by Marianne Riggio
8:45 AM Plenary by Maurice Belote
Happiness and the Search for the Essence of Success
9:30 - 9:45 AM Break
9:45 AM Panel Discussion
Perspectives on Success
Educator: Gloria Rodriguez
Individual with Deafblindness: Ashley Benton Parent: Helene Power
Adult Services: Sue Ruzenski
Administrator: Shirley Maia
11:00 - 11:15 AM Break
11:15 AM - 12 PM Workshops W1.1 Learning and Networking: Lessons Learned from Perkins International Online Training in Latin America with Gloria Rodriguez-Gil, Alvaro Diaz, Paige Klotzman Room: Centerville A This presentation provides some of the solutions that Perkins Latin America & the Caribbean (LA&C) has discovered in delivering online courses. In addition, the presentation will address the challenges of this model, and open the discussion to participants willing to share their own experiences and best practices with the group. W1.2 Children Receive Services with the Power of Technology in Bangladesh with Asma Shilpi (presented by Marianne Riggio and Shahanaz Parveen) Room: Barnstable I This presentation will share information on a new mobile app, currently in its piloting stage, which aims to raise public awareness, collect data and allow access to special needs services. In its current stage, the app can be used by by parents, teachers, community health workers, and other health service providers in order to determine its strengths and areas in need of improvement. Once approved, the app will be integrated as one of the tools to be used by Child Development Centers around the country of Bangladesh. W1.3 Camp Abilities: An Educational Sports Camp for Children who are Visually Impaired or Deafblind with Lauren Lieberman, Melanie Perreault Room: Centerville B This presentation will share an international program called “Camp Abilities,” which encourages and empowers children who are visually impaired or deafblind to get involved in sports and other recreational activities. The camp also guides and trains their teachers and parents on ways to more frequently include them in school and community activities. Participants of this session will learn about the various camps available and the resources that can help parents enter their child in these opportunities. W1.4 Families Create Touch Base Center in Houston with David Wiley, Ashley Davis Room: Osterville A This presentation will explain how two families with children with deafblindness came together to establish a non-profit organization to provide community services specifically geared for adults with congenital deafblindness. The model, called Touch Base Center, employs a program coordinator who plans and schedules activity options at the Center and around the community and aligns individual interveners with each member of the Center. W1.5 Teaching Self-Determination to Elementary Students with Vision Loss with Lanya McKittrick Room:Orleans A
In this presentation, we’ll explore the critical role played by teachers and parents in fostering self-determination in elementary-age students with visual impairments. Participants of this session will gain an understanding of how self-determination skills are being taught at the elementary-level. W1.6 A Communication Model to Guide Assessment and Intervention with Therese Rafalowski Welch Room: Orleans B This presentation will explain the model and its practical use for service providers and families. As each component of the model is unpacked and defined in detail, participants will be encouraged to share information about related resources and strategies they find useful in their own assessment and intervention practices. W1.7 Teaching Students who are Deafblind Through Felting with Cathy Cartwright, Paige Furbush, Catherine Nelson, Kristen Paul Room: Barnstable I Felting is an art form that transforms wool into felt and can be used to make a myriad of tactile craft items. Felting provides many opportunities for students to learn and practice educational and leisure skills including concept development, communication, and fine motor skills. The purpose of this presentation is to provide attendees with a hands-on experience in felting and and an opportunity to learn about its benefits for students who are deafblind. W1.8 Transition Institute Follow-Up: Youth Action Planning with Carol Darrah, Martha Veto, Toni Hollingsworth, Mike Fagbemi, Danna Conn Room: Barnstable II Young adults who are deafblind experience many challenges as they transition from adolescence into adulthood. This presentation focuses on topics and processes that will be critical during college preparation, career planning, and community living. We’ll explore the components of this process in depth, describing ways to guide our students in completing the sections of a transition portfolio, designing an action plan and then putting that plan into action as we, the teachers and professionals, monitor their progress. Our objective is to support the youth participants to take decisive action to turn their dreams into reality. W1.9 Usher Syndrome – One Hundred Years of Discovery with Nancy O’Donnell Room: Grand I This presentation aims to examine and better understand Usher syndrome, identified more than 100 years ago, in an up close and personal way. We will outline the types and subtypes of Usher syndrome, examine population estimates, summarize current research related to Usher syndrome and discuss the support available to individuals with Usher syndrome, their families and the trained professionals that work with them on a daily basis.
12:00 - 1:30 PM Lunch
1:30 - 2:15 PM Workshops
W2.1 ABRAPASCEM and Ahimsa: Partnerships to Ensure Parent Empowerment and Services for People with Deafblindness and Multiple Sensory Disabilities in Brazil with Sandra Farias, Shirley Maia, Vula Ikonomidis Room: Centerville A This presentation reports on the partnership between ABRAPASCEM and Ahimsa to provide support to parents and regional groups. The aim of this collaboration was to connect parents with other parents, where they can meet in a safe environment and share experiences, challenges and receive support from a selected parent leader and the Association. Discussions will focus on ways that partnerships such as this one can empower parents and families of individuals with deafblindness to create powerful alliances. We will discuss the roles these parents assumed in participating in city council legislative processes, ensuring that policies were meeting the real needs of people with deafblindness. W2.2 Let’s Play! Methods for Engagement and Learning for Young Children with Deafblindness with Tanni Anthony Room: Grand I As we know, all children learn through play and benefit from opportunities for joyful self-discovery. These activities support communication skills as well as cognitive, social-emotional, and motor development. This session will review the tenets of play for early life stages and introduce specific adaptations that can assist both spontaneous and designed play scenarios for the young child with combined vision and hearing loss. W2.3 Factors that Support Continuity of Deafblind Learners in Primary School Education Perspective from Practice with Wanume Kibedi Hakim Room: Centerville B In this presentation, we will learn helpful strategies for primary school educational support for children that are deafblind. The presentation will offer an overview of interventions which are used by professionals in a primary school in Uganda, while demonstrating the key importance in valuing each student’s individual learning style. W2.4 Building Communities of Support for Families of Children with Combined Vision and Hearing Loss with Megan Cote, Edgenie Bellah, Patti McGowan, Pam Kissoondyal Room: Orleans A Every month, since February 2015, the State Deaf-Blind Project Family Engagement Coordinators meet, using the MasterMind format, to share needs and find methods to improve the quality of support provided to families across the deafblind network. This session will discuss the various ways that this group now engages with other stakeholders to meet the ever-increasing needs of families with hearing and visually impaired children in the home, school and community. W2.5 Why Aren’t You Paying Attention: Influences and Outcomes with Robin Greenfield Room: Orleans B When teaching and interacting with children that are deafblind, it is critical to understand how and when a child is paying attention. This presentation will define attention and review its multiple components, including brain networks, bio-behavioral states, and different kinds of attention. Participants will watch several videos of children who are deafblind in order to see the telltale cues for when a child is attending versus when they are not. We will also discuss the
various factors that impact attention. At the end of the session, participants will assess their own attention and discuss strategies they can use when teaching and interacting with children with deafblindness. W2.6 Person-Centered Planning with Gilda Reguilón, Johana Odiante Room: Barnstable III This presentation will describe the person-centered planning approach to identify the needs of people with multiple disabilities and their families, providing them with tools to face the challenges that future life presents. This process provides the basis for developing environments that will stimulate and foster the potential of each person to become a participatory member of society, according to his/her own level of independent. W2.7 Collaboration at the Government and Local Level: Seeds for Success with Tom Miller, Ron Benham, Tracy Oshbahr Room: Osterville A This presentation will illustrate the ways that unified collaboration and advocacy for early intervention programs can be best achieved at the government and local levels through strong, transparent support of the early intervention system as a whole. This presentation will use a case study to illustrate the power of this collaboration in mobilizing change and resources for our specialized programs.
2:15 - 3:15 PM Break
3:15 PM Reflections and Future Directions
With Robbie Blaha and Chris Russell
7:00 PM Awards Banquet
Guest speaker: Ambassador Aubrey Webson
Leaving No Child Behind
Conference Closing
8:30 - 11:00 PM After-party and Dancing!
Bass River Room
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