Educating Students with Severe and

Multiple Disabilities

A Collaborative Approach

Fifth Edition

edited by Fred P. Orelove, Ph.D. Virginia Commonwealth University Richmond Dick Sobsey, Ed.D. University of Alberta Edmonton, Alberta, Canada Donna L. Gilles, Ed.D. Virginia Commonwealth University Richmond

Contents

1. Designing Collaborative Educational Services ... 1 Chigee Jan Cloninger
2. Partnering with Parents and Families ... 27 Dick Sobsey
3. Educating Students with Physical Disabilities ... 61 Toby M. Long and Rachel Brady
4. Educating Students with Sensory Disabilities ... 99 Julie A. Durando, Deborah Chen, and Jerry G. Petroff
5. Educating Children with Special Health Care Needs ... 141 Dick Sobsey
6. Integrating Health Care in Education Programs ... 201 Kathryn Wolff Heller
7. Teaching Communication Skills ... 245 Pat Mirenda and June Downing (post.)
8. Nutrition and Mealtime Considerations ... 273 Carole K. Ivey and Dianne Koontz Lowman
9. Designing and Adapting the Curriculum ... 307 Kathleen Gee
10. Instructing Students with Severe and Multiple Disabilities in Inclusive Classrooms ... 351 Alice Udvari-Solner, Katherine Ahlgren Bouchard, and Kiel Harell
11. Creating Educational Adaptations, Accommodations, and Modifications ... 407 Julie Causton, Alice Udvari-Solner, and Kate M. MacLeod
12. Alternate Assessments for Students with Severe and Multiple Disabilities ... 437 Harold L. Kleinert and Jacqueline F. Kearns
13. Transition to Adulthood for Youth with Severe and Multiple Disabilities ... 465 Mary E. Morningstar

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 directed numerous training and demonstration projects related to individuals with disabilities. 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.

Partnering with Parents and Families

the family, and if the family asks about it, then they should be referred to the investigating agency. Although abuse of a student in the home is a difficult topic, some students with disabilities experience maltreatment by school personnel or other students. In some cases, a problem is identified in school that needs to be shared with parents. In other situations, parents note something that leads them to suspect that their child is being abused in school. Parents naturally find these circumstances alarming and may be extremely upset. All school personnel need to avoid taking a defensive position and minimizing parental concerns when these situations occur. They need to make it clear that the school will act to determine the facts and take any necessary action to protect the student.

FAMILY INVOLVEMENT IN EDUCATION

There is no single formula for parental involvement in education programs because every family is different, and team members need to find the best approach for each family. Some parents want to maximize their involvement in planning and program delivery. Others simply want the assurance that their child’s education is in good hands, and once they are confident of that, they prefer minimal interaction with their child’s school. Most parents fall someplace between these two extremes. It is essential for teachers and other professionals to understand the difference between the level of family involvement and the quality of parenting. Parents that seek intensive involvement with their children’s programs and those who seek minimal involvement can be great parents, and both can be poor or even abusive parents. The kind and amount of required interaction with families depends on a number of factors. Students with limited communication often require more home–school communication because they cannot share information about their experiences. This is especially true for children who have health challenges. For example, some parents need to closely monitor their child’s fluid intake on a daily basis.

Child-Centered, Family-Centered, and Family-Friendly Approaches

Child-centered education is tailored to a student’s unique set of needs and abilities and recognizes that children have individual rights independent of their families. A high degree of individualization is required, which is consistent with a child-centered approach, because students with severe and multiple disabilities differ greatly from one another and from other students. Family-centered education shifts the primary intervention from the child to the parents or caregivers. Educators teach them skills that they use with their child. This approach is commonly employed in early intervention programs and home-based education. It assumes that the best interests of the child are also the best interests of the family as a whole. This is frequently but not always true. Sometimes the individual interests of the child are different than the interests of the parents, even in the best of families. Educators must remember that their first responsibility is to their students, but they also need to recognize that a happy and healthy family is in the student’s best interest. A family-friendly approach is one that attempts to put the student’s needs first while considering the needs of the family as a whole.

Getting Acquainted with Families

Although law and policy generally focus on formal requirements to include family in meetings and obtain consent, just getting to know families and becoming comfortable with each other is extremely important. This helps to open and maintain lines of communication, and it makes formal interactions more productive as well as more pleasant for everyone involved. Table 2.1. Questions to ask parents and families to get acquainted

• What are your hopes and dreams for your child’s future?
• Who are the members of the family?
• What works well with your child at home?
• What do you think are the most important things for us to know about your child?
• What is the best way for us to communicate with you?
• What were the best and worst aspects of your child’s previous school experiences?
• Who are the family members that spend time with your child and participate in his or her care?
• What is considered respectful and disrespectful by the family?
• Who makes decisions affecting the children in the family?
• To whom does the family turn for support, assistance, and information?
• What are the family’s values and customs?
• What are the family’s child-rearing practices, forms of discipline, and expectations of children?
• What are the family’s concerns and priorities related to their child with a disability?
• How can I learn more about the family’s perspectives?
• What other health and community services does the family access for their child?

Program Planning

Although most educators and many parents have strong views on what makes a good educational program, few consciously consider this fundamental question: What is the purpose of education? We might also ask ourselves: Does education serve the same purpose for every student? Although these questions may seem abstract and more philosophical than practical, the answers to these questions are critical to placement and program planning decisions. It will be difficult to agree on placement and planning decisions unless educators and parents share common ideas about the answers to these questions. Although their wording may differ, most educational theorists and philosophers agree on a simple basic purpose—the purpose of education is to prepare individuals for their adult roles in society...