Educating Students with Severe and Multiple Disabilities: A Collaborative Approach

364 Pages·2016·20.266 MB·English

by  Fred P. Orelove, Dick Sobsey, Donna L. Gilles

2
3
Paul H. Brookes Publishing Co.
Post Office Box 10624
Baltimore, Maryland 21285-0624
USA
www.brookespublishing.com
Copyright © 2017 by Paul H. Brookes Publishing Co., Inc.
All rights reserved.
Previous edition copyright © 2004.
“Paul H. Brookes Publishing Co.” is a registered trademark of Paul H. Brookes Publishing Co., Inc.
Cover Art: Oil Painting by Jack M. Brandt
The information provided in this book is in no way meant to substitute for a medical or mental health practitioner’s advice or expert opinion.
Readers should consult a health or mental health professional if they are interested in more information.
Some case studies include real people, whereas others are composites based on the authors’ experiences. Any real names and identifying details are
used by permission.
Purchasers of Educating Students with Severe and Multiple Disabilities: A Collaborative Approach, Fifth Edition may download free of charge from the
Brookes Publishing website various resources related to the book. Forms and PowerPoints are available at the following address:
brookespublishing.com/orelove. Use of these materials is granted for educational purposes only; the duplication and distribution of these materials for
a fee is prohibited.
All royalties earned on this publication will be donated to the MECP2 Duplication Syndrome Fund of the Rett Syndrome Research Trust.
Library of Congress Cataloging-in-Publication Data
The Library of Congress has cataloged the print edition as follows:
Names: Orelove, Fred P., 1951- editor. | Sobsey, Richard, editor. | Gilles, Donna L., editor
Title: Educating students with severe and multiple disabilities : a collaborative approach / edited by Fred P. Orelove, Dick Sobsey, Donna L. Gilles;
with invited contributors.
Description: Fifth edition. | Baltimore, Maryland : Brookes Publishing, 2017. | Includes bibliographical references and index. Identifiers: LCCN
2016005307 (print) | LCCN 2016006504 (ebook) | ISBN 9781598576542 (paperback) | ISBN 9781598578164 (pdf) | ISBN 9781598578133
(epub)
Subjects: LCSH: Children with disabilities--Education. | Children with disabilities--Care. | BISAC: EDUCATION / Special Education / General.
EDUCATION / Special Education / Mental Disabilities. | EDUCATION / Teaching Methods & Materials / General.
Classification: LCC LC4015 .O68 2016 (print) | LCC LC4015 (ebook) | DDC 371.9—dc23
LC record available at http://lccn.loc.gov/2016005307
British Library Cataloguing in Publication data are available from the British Library.
Version 1.0
4
Contents
About the Online Companion Materials
About the Editors
About the Contributors
Foreword
Preface
1. Designing Collaborative Educational Services
Chigee Jan Cloninger
2. Partnering with Parents and Families
Dick Sobsey
3. Educating Students with Physical Disabilities
Toby M. Long and Rachel Brady
4. Educating Students with Sensory Disabilities
Julie A. Durando, Deborah Chen, and Jerry G. Petroff
5. Educating Children with Special Health Care Needs
Dick Sobsey
6. Integrating Health Care in Education Programs
Kathryn Wolff Heller
7. Teaching Communication Skills
Pat Mirenda and June Downing (post.)
8. Nutrition and Mealtime Considerations
Carole K. Ivey and Dianne Koontz Lowman
9. Designing and Adapting the Curriculum
Kathleen Gee
10. Instructing Students with Severe and Multiple Disabilities in Inclusive Classrooms
Alice Udvari-Solner, Katherine Ahlgren Bouchard, and Kiel Harell
11. Creating Educational Adaptations, Accommodations, and Modifications
Julie Causton, Alice Udvari-Solner, and Kate M. MacLeod
12. Alternate Assessments for Students with Severe and Multiple Disabilities
Harold L. Kleinert and Jacqueline F. Kearns
13. Transition to Adulthood for Youth with Severe and Multiple Disabilities
Mary E. Morningstar
Index
5
About the Online Companion Materials
Purchasers of this book will find PowerPoints for Chapters 1–13 for course or professional development use at
brookespublishing.com/orelove.
BLANK FORMS
Purchasers of this book may download, print, and/or photocopy the following blank forms for educational or
professional use: Figure 3.2; Figure 5.2; Figure 6.1; Figure 7.3; Figure 8.2; Figure 10.2; Figure 11.4. These
materials are included with the print book and are also available at brookespublishing.com/orelove for both print
and e-book buyers.
6
About the Editors
Fred P. Orelove, Ph.D., Professor Emeritus, Special Education and Disability Policy, Virginia Commonwealth
University, Richmond, Virginia
Dr. Orelove founded and served as director of the teacher preparation program in severe disabilities at Virginia
Commonwealth University from 1981 to 2011. He also served for 20 years as Executive Director of the
Partnership for People with Disabilities, Virginia’s university center for excellence in developmental disabilities.
Since the 1970s, Dr. Orelove has taught children and has directed numerous training and demonstration projects
related to individuals with disabilities. In addition to this book, he has co-authored two books on teamwork and
one on inclusive education. In his retirement, Dr. Orelove is engaged in nonprofit work in Richmond, Virginia,
including working for an inclusive performing arts program and volunteering with children who have been
traumatized.
Dick Sobsey, Ed.D., Professor Emeritus, Educational Psychology, University of Alberta, Edmonton, Alberta,
Canada
Dr. Sobsey has worked with children and adults with severe and multiple disabilities since 1968 as a nurse,
teacher, and researcher. He taught courses on teaching students with severe disabilities and inclusive education at
the University of Alberta from 1982 to 2005. He also served as Director of the J.P. Das Centre on Developmental
and Learning Disabilities from 1994–2008 and the John Dossetor Health Ethics Centre from 2006 to 2011. He is
the father of an adult son with severe and multiple disabilities due to MECP2 (methyl CpG binding protein 2)
duplication syndrome.
Donna L. Gilles, Ed.D., Associate Professor, Special Education and Disability Policy, Virginia Commonwealth
University, Richmond, Virginia
Dr. Gilles is Executive Director of the Partnership for People with Disabilities (Virginia’s UCEDD). She taught
students with significant disabilities in Maryland public schools for 6 years while earning a master’s degree in
educating students with severe disabilities. After earning her doctorate, Dr. Gilles directed a variety of teacher
preparation, professional development, and technical assistance projects at the University of Maryland and the
University of Florida, focusing on students with severe and multiple disabilities, autism, and sensory disabilities.
She served on the Executive Board of TASH for 7 years, including 3 years as board president. Dr. Gilles currently
directs the severe disabilities teacher preparation program at Virginia Commonwealth University.
7
About the Contributors
Katherine Ahlgren Bouchard, Ph.D., is currently a Content Specialist in Special Education at the Madison
Metropolitan School District. Dr. Bouchard received her Ph.D. from the University of Wisconsin-Madison in
Special Education. In addition to facilitating professional development experiences for educators seeking to
universally design instruction for all students, she also supports schools in developing infrastructure necessary to
support inclusive environments.
Rachel Brady, PT, DPT, M.S., is a physical therapist and research assistant professor at the Georgetown
University Center for Child and Human Development. She coordinates and provides professional development
for early childhood intervention and special education providers around best practices for program planning and
providing services.
Julie Causton, Ph.D., is Professor in the Inclusive and Special Education Program in the Department of
Teaching and Leadership at Syracuse University. Her teaching, research, and consulting are guided by a passion
for inclusive education. She teaches graduate and undergraduate courses focused on including students with
disabilities, supporting behavior, differentiation, special education law, lesson design, and adaptation.
Deborah Chen, Ph.D., is a Professor of the Department of Special Education at California State University,
Northridge, where she coordinates the early childhood special education program. Her research and publications
focus on collaborating with families of diverse cultural and linguistic backgrounds, supporting the learning and
development of young children with multiple disabilities and sensory impairments, and promoting caregiver–child
interactions.
Chigee J. Cloninger, Ph.D., has been a teacher of children and adults with and without disabilities for many
years. Even in leadership or research positions, teaching—in the sense of bringing about change—has been a key
component of her work. Her interests in creative problem-solving approaches, communication, and learning
processes are integral to her work in individualized education and leadership. Dr. Cloninger is Professor Emerita
from The University of Vermont, having been a faculty member and executive director of The Center on
Disability and Community Inclusion.
Julie A. Durando, Ed.D., directs the Virginia Project for Children and Young Adults with Deaf-Blindness at the
Partnership for People with Disabilities at Virginia Commonwealth University. She served children with multiple
disabilities and sensory impairments, including deafblindness, for 8 years as both a classroom and itinerant teacher
in central Florida. She completed her doctorate in special education from the University of Northern Colorado as
a National Center for Leadership in Visual Impairment Fellow. Dr. Durando’s research and writing focus on early
braille literacy experiences and instruction for children with sensory impairments and multiple disabilities.
June E. Downing, Ph.D. (1950-2011), was named Professor Emerita of Special Education at California State
University, Northridge, and served as an Associate Professor in Special Education at the University of Arizona. Dr.
Downing was a national leader in the field of special education, a model advocate for individuals with severe and
multiple disabilities, and a champion of inclusive education. Having begun her special education career as a
teacher of students with visual impairments and multiple disabilities, including deafblindness, she focused on
ensuring that teachers could understand and implement best practice in the inclusive classroom, and that students
with severe and multiple disabilities experienced positive outcomes from social, communication, and academic
instruction. We made a conscious decision to carry her legacy forward by maintaining her presence in this edition,
and we thank Dr. Pat Mirenda for supporting us in this endeavor.
Kathleen Gee, Ph.D., is a professor in the Departments of Teacher Credentialing and Graduate and Professional
Studies in the College of Education at California State University, Sacramento. She has been a teacher and a
teacher educator. Dr. Gee also has directed numerous demonstration and research projects in authentic school
settings focused on the inclusion of students with the most intensive support needs. She is a frequent consultant
8
and inservice training provider related to quality services for children and youth with the most intensive support
needs.
Kiel Harell, Ph.D., is an instructor in elementary and secondary education at the University of Minnesota,
Morris. He teaches classes on foundations of education and inclusive teaching practice. He is currently a doctoral
candidate at the University of Wisconsin–Madison.
Kathryn Wolff Heller, Ph.D., RN, is Professor Emerita at Georgia State University. Dr. Heller currently draws
from her nursing and special education careers to conduct research and provide instruction to teachers and nurses
on children and adults with physical and health impairments. One of her primary interests is on providing
effective educational instruction and health care for children with physical and health impairments.
Carole K. Ivey, Ph.D., OTR/L, is an assistant professor with the Department of Occupational Therapy, School
of Allied Health Professions, and is the LEND faculty advisor for occupational therapy (OT) at Virginia
Commonwealth University in Richmond, Virginia. She received her bachelor’s and master’s degree in OT and her
Ph.D. in special education and disability policy at Virginia Commonwealth University. She has worked as an
occupational therapist in public and private schools, early intervention, outpatient therapy, and private practice.
Recognizing the collaborative care needed to work with children with developmental disabilities, much of her
teaching and research areas of interest centers on collaboration and teamwork.
Jacqueline F. Kearns, Ed.D., is Project Director/Principal Investigator at University of Kentucky. Dr. Kearns has
worked in the area of moderate, severe, and multiple disabilities for over 33 years. First as a teacher of middle and
high school age students and then as a technical consultant for inclusive education and neighborhood schools, she
pioneered alternate assessments. Most recently, she led the professional development team on the National
Centers and State Collaborative Alternate Assessment. Currently, she directs projects related to the
implementation of communication for students with complex needs.
Harold L. Kleinert, Ed.D., is formerly Executive Director of the Human Development Institute—University
Center for Excellence in Developmental Disabilities Education, Research, and Service at the University of
Kentucky, and Professor Emeritus, Department of Rehabilitation Sciences, College of Health Sciences.
In his 45 years in the field of developmental disabilities, he has taught students with moderate and severe
intellectual disabilities in settings ranging from state institutions to regular classrooms with typical peers. He was
lead author of the first text published in alternate assessment for students with significant cognitive disabilities:
Alternate Assessment: Measuring Outcomes and Supports for Students with Disabilities, as well as a second text on
alternate assessment and access to the general curriculum: Alternate Assessment for Students with Significant
Cognitive Disabilities: An Educator’s Guide.
Dianne Koontz Lowman, Ed.D., is Director of Counseling and Advocacy at Safe Harbor, a center that serves
survivors of sexual violence, domestic violence, and human trafficking. In addition to outpatient counseling, she
facilitates support groups for female survivors who are incarcerated, and equine assisted groups for male and
female survivors of sexual violence and groups for veterans with combat-related posttraumatic stress disorder.
Toby M. Long, Ph.D., PT, FAPTA, is Professor in the Department of Pediatrics, Georgetown University and
Director of Professional Development for the Center for Child and Human Development, a University Center for
Excellence in Developmental Disabilities. Dr. Long is Director of the Graduate Certificate Program in Early
Intervention offered by Georgetown University and teaches Children with Disabilities within the undergraduate
minor in education, inquiry and justice. Dr. Long is an internationally known speaker and consultant on service
delivery to children with disabilities and special health care needs. The recipient of a variety of awards, Dr. Long
was recently named a Catherine Worthingham Fellow from the American Physical Therapy Association.
Kate M. MacLeod, M.S.Ed., is a doctoral student in the special education and disability studies programs at
Syracuse University and works as an instructor and graduate assistant within the teaching and leadership
department. She is a former high school special education teacher and has focused her career on bringing inclusive
opportunities to all. She works with districts and schools to create inclusive special education practices and serves
as an educational consultant to families who wish to see their children included in general education settings. Her
research and professional interests include inclusive education reform, inclusive teacher training, and best practices
for the inclusion of students with extensive support needs.
Pat Mirenda, Ph.D., BCBA-D, is Professor in the Department of Educational and Counseling Psychology and
9
Special Education, and Director of the Centre for Interdisciplinary Research and Collaboration in Autism
(CIRCA) at the University of British Columbia. She teaches courses on augmentative and alternative
communication, autism spectrum disorder, inclusive education, instructional techniques for students with
significant learning challenges, and positive behavior support. The fourth edition of her co-authored book
Augmentative and Alternative Communication: Supporting Children and Adults and Complex Communication Needs
was published in 2013; and another co-edited book, Autism Spectrum Disorders and AAC, was published in
December, 2009. She has published numerous research articles and chapters and presents frequently at
international, national, and regional conferences.
Mary E. Morningstar, Ph.D., is Associate Professor in the Department of Education at the University of Kansas.
She coordinates the teacher endorsement program for low incidence disabilities as well as the masters program in
secondary/transition. Her interests lie in the intersection of inclusive education in secondary schools and the
transition to inclusive adult lives for youth with severe disabilities.
Jerry G. Petroff, Ph.D., is Professor at The College of New Jersey (TCNJ) School of Education in the
Department of Special Education, Language and Literacy. In addition, he is Executive Director of TCNJ’s Center
for Sensory & Complex Disabilities and the Faculty Director of the TCNJ Career and Community Studies
Program. Dr. Petroff has over 35 years of experience working on behalf of students, youth and adults with
developmental disabilities with a focus on those who are deafblind. Holding a doctorate in psychological studies in
special education, he is an expert in inclusive education, assistive technology (augmentative and alternative
communication), behavior support, and the transition of students with disabilities from school to adult life for
youth with intellectual/developmental disabilities.
Alice Udvari-Solner, Ph.D., is a national consultant in education and holds a faculty appointment at the
University of Wisconsin–Madison in the Department of Curriculum and Instruction. The graduate and
undergraduate courses she teaches on the topic of accommodating diverse learners in inclusive settings are integral
to the elementary, secondary, and special education teacher certification programs. Universal design,
differentiation, active learning strategies, collaborative teamwork among educators and paraprofessionals, and
systems change toward inclusive education are areas that are central to her research and teaching.
10