Building On Family Strengths - Pathways to Positive … on Family Strengths Conference 1999 ......


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  • Building on Family Strengths Conference 1999 1

    Building On Family Strengths: Research and Services in Support of Children and Their Families

    1999 Conference Proceedings

    Lynwood J. Gordon Pauline Jivanjee Jay M. G. King Kaye J. Exo Editors

    Research and Training Center on Family Support and Childrens Mental Health Regional Research Institute for Human Services Graduate School of Social Work Portland State University P.O. Box 751 Portland, Oregon 97207-0751 Telephone: 503-725-4040 Fax: 503-725-4180

    October 2000

  • The recommended citation for this publication is:

    Gordon, L. J., Jivanjee, P., King, J. M. G., & Exo, K. J. (Eds.). (2000). Building on family strengths: Research and services in support of children and their families. 1999 conference proceedings. Portland, OR: Portland State University, Research and Training Center on Family Support and Childrens Mental Health.

    This publication was developed with funding from the National Institute on Disability and Rehabilitation Research, United States Department of Education, and the Center for Mental Health Services, Substance

    Abuse and Mental Health Services Administration (NIDRR grant number H133B40021-96, 97, 98, & 99). The content of this publication does not necessarily reflect the views or policies of the funding agencies.

    Portland State University supports equal opportunity in admissions, education, employment, and the use of facilities by prohibiting discrimination in those areas based on race, color, creed, or religion, sex, national origin, age, disability, sexual orientation, or veterans status. This policy implements state and federal law (including Title IX).

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  • Preface

    The 1999 Building on Family Strengths Conference, held April 19 21, was a fine example of a new tradition in Portland, Oregon. Each year since 1994, there has been a coming together of family-centered researchers, family members, service providers, advocates, policy makers, and educators to share the latest knowledge and ideas about improving services for children and youth with serious emotional disorders and their families. We are pleased to present these proceedings as a record of the many innovative, creative, and thought-provoking presentations at the conference. Although not all presentations are included here, we thank all presenters for their careful preparation, dynamic presentations, and thoughtful, respectful responses to participants questions and comments.

    The goal of the conference was to showcase cutting edge research and innovative programs and practices that are family centered. Cultural competence was a theme of the conference, which featured a number of outstanding examples of culturally competent research studies, programs, and practices designed to meet the unique needs of specific cultural groups. The conference emphasized the sharing of research that is relevant, accessible, and useful for family members, service providers, policy makers, and other non-researchers in their work to improve services. It highlighted the participation of family members as partners in the planning, development, implementation, interpretation, and use of research. There were many lively discussions among researchers, family members, service providers, and other conference participants about their experiences collaborating toward the goal of improving services for children with serious emotional disorders and their families. We were especially pleased this year about the participation of young adults who shared with conference participants their experiences as consumers of mental health services. Their contributions were especially appreciated because of the courage it took for these young people to tell their stories.

    Section I of the proceedings includes transcriptions of the keynote and plenary presentations. Summaries of paper and symposium presentations are provided

    in Section II, with research presentations in Part A and advocacy and program innovations in Part B. Contact information for presenters and co-presenters who submitted summaries to these proceedings is provided on the title page of each presentation. These summaries are followed by a reproduction of the conference agenda and an index of the presenters included in these proceedings.

    The conference was planned by a committee led by Kaye Exo. This was her 5th and final year as Conference Coordinator for this event, and we thank her for her many years of excellent leadership. The conference committee also included Barbara Friesen, Lynwood Gordon, Shad Jessen, Pauline Jivanjee, Jennifer Simpson, and Janet Walker. The following Research and Training Center staff members went above and beyond the call of duty in providing assistance and support: Susan Almquist, Elizabeth Caplan, Rashad Kahn, Denise Schmit, and Margaret Wade. We owe special thanks to our transcriptionists, Martha Gordon and Katie Schultze, who spent countless hours transcribing tapes. Finally, our appreciation goes to Shad Jessen, whose piano entertainment during the poster presentation session enhanced this special occasion.

    These proceedings were produced by the combined efforts of Art Bridge, Rachel Elizabeth, Maria Everhart, Margaret Wade, Timothy Zickafoos, and the editors listed below. Co-sponsors for the 1999 conference included the Research and Training Center on Family Support and Childrens Mental Health; the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services; and the National Institute on Disability and Rehabilitation Research, U.S. Department of Education.

    The Editors

    Lynwood J. Gordon, M.S.W.

    Pauline Jivanjee, Ph.D.

    Jay M. G. King, B.A.

    Kaye J. Exo, M.S.W.

    Portland, Oregon.

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  • Sponsored By

    Research and Training Center on National Institute on Disability and Family Support and Childrens Mental Rehabilitation Research, U.S. Health Department of Education

    Federation of Families for Childrens Center for Mental Health Services, Mental Health Substance Abuse and Mental Health

    Services Administration, U.S. Department of Health and Human Services

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  • Research and Training Center on

    Family Support and

    Childrens Mental Health Regional Research Institute for Human Services

    Graduate School of Social Work

    Portland State University

    The Research and Training Center on Family Support and Childrens Mental Health, at Portland State University, Portland, Oregon, was funded for 199499 by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education, and the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services. The grant funds supported activities that complemented the work of the Research and Training Center (RTC) from 1984-94. The RTC has been refunded for 19992004. Information regarding current projects can be found at the above website.

    The RTCs activities focus on improving services to families whose children have mental, emotional or behavioral disorders through a set of related research and training programs. From 19941999, research efforts clustered around five themes:

    1. Family Participation in Services. This cluster of four projects was organized to study ways that family members can contribute to the planning and implementation of the program of services for their own child. A special focus of the work of this cluster was on issues of empowerment, including ways of measuring empowerment and ways of increasing empowerment.

    2. Family Participation at the Policy Level. Projects in this cluster examined issues, constraints, and innovative practices related to the participation of parents of children with serious emotional disabilities on decision making bodies that plan, evaluate, and coordinate services. Special emphasis was on

    ways of involving families of color at the policy-making level.

    3. Families and Out-of-Home Care. In this cluster, research projects were related to services that were provided to children who cannot live at home and the relationship of the family to this type of program. There were two major concentrations in this cluster. The first focus was on family support and the role family support plays in helping children stay at home. The second focus was on out-of-home treatment resources and the contribution that family members can make to the effectiveness of treatment when their child is not living at home.

    4. Evaluation of Family Organizing Efforts. This project involved an evaluation of 28 statewide family support networks funded September 1995 by the Center for Mental Health Services. The national evaluation examined aspects of family support, system change, and infrastructure development across projects.

    5. Interventions in Professional Education. Projects in this area were designed to increase service providers knowledge and skills regarding state-of-the-art practice in childrens mental health.

    RTC staff includes faculty at the Graduate School of Social Work, research associates and assistants, students, and support personnel. The RTC is part of the Regional Research Institute for Human Services of the Graduate School of Social Work at Portland State University.

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    Section I Key and Plenary Sessions

    Building on Family Strengths 1999 Conference: Opening Address. . . . . . . . . . . . 3 Barbara J. Friesen, James Ward, Nancy Koroloff, Elaine Slaton, Tom Hanley

    Keynote Address: Building Reciprocal Family-Professional Relationships: Culture in Special Education. . . . . . . . . . . . . . . . . . .7 Beth Harry

    Plenary Session: Family Members as Full Partners in Evaluation . . . . . . . . . . . . . . . . 19 Mary McCormack, Kathy Kipp, Kathleen Brady, Mary Parker-Flett, Susan Lowry

    Plenary Session: We Are You:

    Beyond Race . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

    Chisao Hata, Jonathan Bakke, Chelsea Brendtro, Isaac Trimble, Lauren Wyhs

    Plenary Session: Youth and Young Adult Perspectives: Living with a Mental Health Challenge. . . . . . . . . . . . . . . . . . . . 39 Jonnie Banks, James, Betsy, Callie, Julia

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  • Section II Part A: Research Papers 55

    African American Father-Daughter Relationships Across the Lifespan: An Innovative Approach. . . . . . . . . . . . . . . . . . . . . 57 Kimberly Rene Adams

    Parent Dilemmas and Solutions:

    Perspectives on Work-Family Fit . . . . . . . . . . . . . . 59 Eileen Brennan, Julie Rosenzweig, A. Myrth Ogilvie, Ann Ward

    Caregiver Experiences with Managed Behavioral Health Services for Children with SED . . . . . . . . . . . . . . . . . . . . . . 63 Craig Anne Heflinger, Patti Orten, Sarah H. Scholle

    What Maintains Fidelity in a Wraparound Approach? Why Is This Important to Families and Providers?. . . . . . . . . . . 65 Rosalyn Malysiak Bertram, Barry Bertram Malysiak, Albert J. Duchnowski

    Families Navigating Multiple Systems: Working with the Child Welfare System to Meet Childrens Mental Health Needs. . . . . . . . 71 Lynwood J. Gordon, Cindy Workman,

    Kim Ramsey, Roger Taylor,

    Beth Bannister Anver, Betty Grasser

    Applying System of Care Principles to Clinical Practice: Parents as Co-Presenters. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Marsali Hansen, John Mwaura, Ginny Jones

    The Foster Family Survey: Strengthening Care of Our Children with Mental, Emotional, and Behavioral Disorders. . . . . . . . . . . 77 A. Myrth Ogilvie, Kay Dahl

    Building Support Networks for Families of Children with Special Needs. . . . . . . . . . . . . . . . 81 Phyllis A. Scalia, Kechia Mlatawou

    Measuring and Portraying Family-Relevant Evaluation Constructs in Family-Friendly Ways. . . . . . . . . . . . . . . . . . . . . . . . 85 Marilynn Williams, Linda Green, Ann Vander Stoep

    Whats Working and Why: Challenges and Solutions to Involving Parents in Childrens Programming. . . . . . . . . . . . . . . . . . . 91 DeDe Wohlfarth

    Family Participation in Service and Education Planning. . . . . . . . . . . . . . . . . . . . . . 93 Barbara J. Friesen, Jean M. Kruzich

    Implementation of an Oregon Law to Prevent the Transfer of Custody . . . . . . . . . . . . 95 Barbara J. Friesen, Kelly Blankenship, Michael Pullmann, Linda Reilly, Judy Rinkin

    The Differential Impact of Welfare Reform on the Quality of Life of Low Income Women: Racial and Ethnic Comparisons. . . . . . . . 99 Delia Olufokunbi, Roger A. Boothroyd

    Section II Part B: Advocacy and Program Innovations

    Developing Community-Based Support Through Mental Health and Social Service Collaborations. . . . . . . . . . . . . . . . . . 109 Sherry Archer, Karen McPhee, Karin McCaghren, Donna Hurl, Elizabeth Grippen, Tim Johnson, Melissa Yukich, Steve Berman, Guy Burstein, Derald Walker

    Interagency Collaboration in Rural Areas. . . . . . . . 111 Katherine W. Bubar, Becky Hayes Boober, Amber Gahagan

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  • Ethics of Service Delivery and Evaluation in Systems of Care: Individual Site and National Perspectives . . . . . . . . . . . . . . . . . . . . 113 E. Wayne Holden, Marjorie Withers, Trina Osher

    Opportunities to Change the System: What You Need to Know About Transition Policies . . . . . . . . . . . . . . . . . . . . 115 Constance Lehman, Nancy Koroloff

    Listen to Children: A School-Based Program to Provide Support to Children with High-Risk Behaviors. . . . . . . . . . . . . . . . . . . . 117 Sherry Moccia

    Coordinated Practice Reviews:

    Evaluating Linkages Between Child,

    Family, and Service System. . . . . . . . . . . . . . . . . . . 119

    Sharon Nobriga, Kathleen Pahinui, Mark ODonnell

    Building Alliances: A Community and School-Based Initiative. . . . . . . . . . . . . . . . . . . 123 Angel Ongcapin

    Prevention, Access, Self-Empowerment,

    & Support: A Means to Success . . . . . . . . . . . . . . .125

    Lenora Reid-Rose, Linda Betts, Ulysses Harrell, Neville Morris, Colin Dublin, Danielle Sharp, Brian Wallen, Marsha Johnson, Sarah Roberts, Brenda Caves

    Early Childhood Mental Health . . . . . . . . . . . . . . 129 Jennifer Simpson, Nancy Koroloff, Andrea Doerfler

    Involving Parents: A Recipe For Success . . . . . . . 133 Dan Naylor, Howard Harrington, Don Sittig, Jeremy Sittig

    Local Capacity Building to Address Violence: Community and University Collaboration . . . . . . 137 Bev Tittle-Baker, Sara Scott, Christina Risley-Curtiss, Colene Sehested

    A School-Based Mental Health Program: Collaboration In Action. . . . . . . . . . . . . . . . . . . . . 141 Denise Cobb, Diana Kachurka, Sarlyn Tate

    Section III Conference Agenda

    Index of Presenters. . . . . . . . . . . . . . . . . . . . . . . . . 179

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    Key and Plenary Presentations

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  • Table of Contents

    Barbara J. Friesen Director, Research and Training Center on Family Support and Childrens Mental Health Professor, Graduate School of Social Work Portland State University PO Box 751 Portland, Oregon 97207 Voice: 503-725-4040 Fax: 503-725-4180 [email protected]

    James Ward Dean, Graduate School of Social Work Portland State University PO Box 751 Portland, Oregon 97207 Voice: 503-725-4712 Fax: 503-725-5545

    Nancy KoroloffDirector, Regional Research Institute for Human Services Portland State University PO Box 751 Portland, Oregon 97207 Voice: 503-725-4040 Fax: 503-725-4180

    Elaine Slaton Technical Assistance Coordinator, Federation of Families for Childrens Mental Health 1101 King St, Suite 420 Alexandria, Virginia 22314-2971 Voice: 703-684-7710 Fax: 703-836-1040

    Tom HanleyEducation Research Analyst Office of Special Education Programs U.S. Department of Education 330 C Street, Room 3526 Washington DC 20202

    Building on Family Strengths 1999 Conference: Opening Address

    Barbara Friesen: Good morning. My name is Barbara Friesen, and it is my pleasure to welcome you to the 1999 Building on Family Strengths Conference. Five years ago we had to work really hard to find researchers who were working with families who could really help us to address and promote the goals of this conference. These goals are to bring together researchers, family members, and service providers who share a common purpose and who together can build programs with evidence about how well they work. And now, if you look at our conference program, we have many, many examples of family members, researchers, program directors, and others working together in collaborative research and evaluation. We dont take credit for that, but we are very pleased to see that that is happening.

    So with no further ado, it is my pleasure to introduce to you Dr. James Ward, who is the Dean of the Graduate School of Social Work at Portland State University. Our Research and Training Center on Family Support and Childrens Mental Health is part of the Regional Research Institute, which is a part of the Graduate School of Social Work. Dean Ward will bring you his greetings.

    James Ward: Good morning. It is my great pleasure to welcome you to Portland and welcome you to the 1999 conference, Building on Family Strengths: Research

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    mailto:[email protected]

  • and Services in Support of Children and their Families. It is a marvelous undertaking, and we always feel a special surge of energy when we come into the cityto see a variety of backgrounds, of persons working collaboratively, pooling their resources and knowledge, in a spirit of doing something that is very important for our community, for persons in need of service. I understand we have family members here. We have researchers, advocates, educators, administrators, service providers, case managers, policy makers, and others in attendance today. We looked at the program, and we see a certain richness in the programs, and we know that the staff of the Research and Training Center has worked with diligence to pull together an exciting program. We hope that you will find it exciting, you will find it educationally beneficial, and that you will go away, back to your respective homes, full of energy and determination, to really make a difference.

    Nancy Koroloff: Welcome. I am Nancy Koroloff. I am the director of the Regional Research Institute, and it is our job, my job, to try to provide a supportive research environment for the Research and Training Center so they can do their work. I think the most important thing I have to say here is that it is really exciting to see so many family members and so many researchers and so many providers in the same room. I think thats the real importance of this conference, the fact that family members and researchers talk together at the same level and try to have a conversation about whats important to the both of them. I just want to note that the influence of the Research and Training Center has gone beyond its bounds within our Research Institute, and now many of our projects on topics other than childrens mental health are involving consumers and family members in other aspects of the research. So it has really become a theme within the Regional Research Institute, and certainly that was sparked and begun with much of the activity of the Research and Training Center.

    Barbara Friesen: I am very pleased to introduce to you Elaine Slaton, who is here representing the Federation of Families for Childrens Mental Health.

    Elaine Slaton: I wanted to tell you a story about shoes. About 12 years ago, this is a story a friend of mine shared with me. Scott Bryant Comstock is a consultant

    in this field and has been really helpful to families over the years. But when I first met him he told me this story about himself. He was on his way to Portland to a meeting that Barbara Friesen was having. It was a meeting where Scott was invited because he had his degree and all this academic experience behind him, but he was so thrilled to be coming to Portland to help families understand what it was they needed to do to make things better. So he gets on the bus all full of himself with these families, and he sits down next to a grandma. I think she was from Philadelphia or somewhere. So he sits there, and he says to himself, Shes going to be so thrilled when she finds out who she is sitting next to. So he proceeds to tell her, I am Scott Bryant Comstock, and I have a degree in this, and I have studied this, and I did some research on that. She listens to him, and he gets all done, and he kind of sits down real proud of himself, waiting to hear her exclaim how thrilled she is to meet him. And she looks at him and she goes, Honey, Ive got shoes older than you. So that was the early Portland story, and I always remember the metaphor of what she was saying when she was telling him she had shoes older than him.

    It is now years later and the Federation of Families has just celebrated its 10th anniversary. It is an incredible meeting here with over 400 participants. Weve had a great start this morning. We had a pre-conference session with a group of families where the Federation is trying to kick off some of the work we are doing trying to teach evaluation and research skills to families, so that we can choose what role we are going to play in research projects. It is thrilling to see so many family and research partnerships on the agency. It is thrilling to me to look on the agenda, and I spotted two parent-child partnerships. Sue Smith and Carol Obrochta are both here presenting in partnership with their kids who are now adults and playing important roles in this movement. So the family movement is off and running, and we are bringing our shoes right along with us. And on behalf of the Federation, welcome all of you.

    Barbara Friesen: Now it is my pleasure to introduce Dr. Tom Hanley, who is an Education Research Analyst with the Office of Special Education Programs in the U.S. Department of Education. Tom is very important to all of us in the sense that he is in touch with what is going on across the country. He helps think up good

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  • ideas that people can get support for to study and promote good practice in education. He is also a tireless advocate, really, for childrens mental health issues. Tom will be introducing our keynote speaker.

    Introduction of Speaker

    Tom Hanley: People, thats what this is all about Building on Family Strengths, the name of this conference. This is the kind of meeting that reminds me of how lucky you all are to be working in this area, supporting the mental health of children and their families. Thats why I am so happy to introduce our keynote speaker, Dr. Beth Harry from the University of Miami. Dr. Harrys work is completely grounded in the people connection. She continually reminds all of us, parents and professionals, that everything we do, and especially the good things that we do, are centered on the relationships between us and with our children. And if you havent heard Dr. Harry before, you are also in for a special treat.

    Dr. Harry speaks English the way Ive come to believe it was truly meant to be spoken, with a Jamaican flavor. Beth Harry was born in Jamaica and began her career as an elementary school teacher there. Over her remarkable career, she has also taught in junior and senior high schools and in colleges, in Canada, the West Indies, and in the United States. Along the way she had the ultimate educational experiencebecoming a parent. As many of us know, the quintessential and truly eye opening appreciation of special education also comes when you find yourself on the other side of the IEP [Individualized Education Program] table.

    Dr. Harry came to the United States in 1985 and received her doctorate in special education at Syracuse University in 1989. But I believe that was a double doctorate, because she also had already earned her doctorate in special education from the university of life. And I also believe that thats why her work has focused so strongly on the effects special education and related services have on real people, on families and kids and the dedicated professionals who work in education, health, mental health, and the other related helping professions. From 1989 to 1995, Dr. Harry taught at the University of Maryland. When she was there, she was very helpful to us in the Department of Education in her work to help us to develop the departments national agenda to improve results for children and youth with serious emotional disturbance. She is now an Associate Professor in the Department of Teaching and Learning at the University of Miami, where I like to point out that last year Dr. Harry won one of our field-initiated research projects for a study on exemplary special education referral and decision making process for culturally and linguistically diverse students.

    Before Dr. Harry speaks, and in case she forgets to, I also wanted to plug two new books which Dr. Harry and her co-authors have that are coming out in a couple of weeks. One is titled Culture in Special Education. The other is Building Cultural Reciprocity with Families. And both of these texts extend the work that Dr. Harry has been doing, emphasizing the importance of culture, family, and interactions between people. Without further ado, let me introduce, happily and gratefully, Dr. Beth Harry.

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  • Table of Contents

    Beth HarryDepartment of Teaching and Learning University of Miami 6331 SW 62nd Terrace South Miami, Florida 33143 Voice: 305-284-4961 Fax: 305-284-6998

    Keynote Address: Building Reciprocal Family-Professional Relationships: Culture in Special Education

    Beth Harry: The title of my presentation this morning is Building Reciprocal Family-Professional Relationships: Culture in Special Education. I want to start by reconstructing those two pieces of that title and talk just a little about what I mean by that kind of language. The term reciprocal relationships is really a term used by Maya Kalyanpur, who is a co-author with me for the two books that are currently about to be published by Brookes. She and I came up together with a concept that we refer to as cultural reciprocity. What we are referring to there is just the idea that relationships with families need to be reciprocal, and particularly with families from non-mainstream backgrounds. I think any of us who have ever either been in the minority position or worked with people from minority backgrounds know that usually it is the person from the minority background that has to do the changing. I think that is normal, it is natural, it is the way it is. You are the minority, you are the smaller group, and therefore you tend to have to do the bending. Thats the way we are as humans. But I think as professionals in special ed. we want to do things better than just the normal. We want to do them the best way we can. And I do think the best way we can do that as far as families from diverse background goes is for us to learn to bend, too. So that

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  • we can work both ways with families. So that is the idea of reciprocity, one thing that I want to talk about.

    Then I am going to talk a bit about what we mean when we say culture in special education. Let me just say a little bit more about cultural reciprocity and my own personal story. As Tom said to you, I came into the field as a parent. I would mention to you that my daughter died when she was 6, almost six. She had cerebral palsy, and her death was a shock to us. It was not expected. But she was a wonderful little girl, and she changed my life. She changed my career. She changed really so much about the way I think about the world and what I am doing. When I was in Trinidad, where she was born, I was very fortunate. I was able to go back to Canada, briefly, for a year and do a diploma in special ed. And then I went back home to Trinidad, and I started a small school for children with disabilities. We call the school the Immortel Center. It is French for everlasting. But in Trinidad it is the name for a tree, a beautiful flowering tree. Some of you may know the poinciana. Well, immortel is cousin to the poinciana, the same family of trees. But in Trinidad it carries a particular connotation. The immortel tree in Trinidad grows wild in the forest. And one of the things that Trinidadian agriculturists did, during the years when the cocoa plant was the key agricultural product in Trinidad, they started to plant the cocoa under the shade of the immortel, because cocoa needs shade to thrive. It doesnt thrive very well in direct sunlight. So the immortel in Trinidad has the reputation of providing shade for a delicate and very important plant. We called our school the Immortel Center to reflect that symbolism, to suggest that we believe that our children with severe disabilities needed more shade than other kids. We wanted them to have the light, but we wanted the light to be deflected by a certain amount of shade and thought we could do it under that kind of belief. Remember, in a country like Trinidad, which is a third world or developing country, we dont have public funding for kids with disabilities. So anything you do is private, and you go around and beg the community to support you. And that is basically what we did. But I just want to say that there I was, in a society where we had no laws for special education, no laws to protect the disabled, nothing like the Americans with Disabilities Act. Nothing like that idea, nothing whatever, really official in place for children with disabilities. So we sort of had to make it up as we went along, much like parents in America did before the 1970s.

    When I left there in 1985, to come to Syracuse to do my doctorate, which was a few years after my daughter died, I was very fortunate. I was able to turn the school over to the parents, who formed a not-for-profit corporation, and the school is still there. I left there, with all the cultural differences that define that island and that part of the world, with my own personal experience of being a parent in such a place, which had really no supports whatever, and came to Syracuse, New York. Can you imagine, upstate New York, in the depths of that snow and cold? I was welcomed by some very wonderful, very warm people at Syracuse University. I worked with people like Doug Biklen, Bob Bogdan, people who have been at the forefront of making changes, especially for people with severe disabilities. But there was one big cultural difference that was really obvious, and it was a bit of a shock to me. I mean, there were lots, but one that I think about professionally was the view of inclusion. I was coming from a country where if we didnt provide a sheltered setting for a child, they wouldnt be anyplace. They would be at home. There would not be any schooling, not be any education at all. One of the things that I found so interesting with my professors in Syracuse was that they had to learn that my view of the need for protected settings for children with disabilities had its roots in a reality which, although they didnt have it any more, they could advocate for inclusion. But they had to learn that I couldnt where I was coming from. And I had to learn what inclusion meant for them in this particular setting. And that was interestingly enough one of the greatest challenges of my doctoral work, for me to learn to understand the roots and the meaning and the goals of inclusion and for them, I think, to reciprocally hear what I was saying about my own views. That was a very interesting cultural exchange that I experienced then. And that is the kind of thing I mean when I talk about cultural reciprocity. It can touch on anything. It can touch on child rearing beliefs. It can touch on beliefs about instruction. It can touch on basic values, such as what should be the goals of education.

    Let me talk about culture in special education then. I am referring to the underlying beliefs that guide us into the direction that we go and into the decisions we make. Maya Kalyanpur and I, when we were writing the book that is about to come out, we were thinking of calling the book The Cultural Underpinnings of Special Education. And then I talked to a girlfriend of mine from Jamaica,

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  • and she said, What? You cant call the book that. It sounds like undergarments. I said, OK, got to change. But really, we can spend some time reconstructing different types of undergarments and what they tell you about the period, about the time, about the epoch, about an individual, about a persons sense of themselves. And thats in a way what we are trying to do when we talk about underpinnings of special education.

    I want to mention just a few key beliefs that are so deep that I think we dont pay attention. We just take them for granted. Because one of the things about cultural beliefs is that we grew up with them. It is what my mom said. It is what my grandparents said. It is what everybody did around me. It is the way we talk, the way we walk, the way we look at each other. All of those things. And you dont think about them, they are just what you do. They are the norm; they are natural. They come naturally. So what we tend to do with things that come naturally is we tend to believe that they are universal. It is a normal human reaction. This is how things are done. And very often it is not until you come in contact with somebody that has a different belief that you suddenly go, Huh? It suddenly strikes you, That is another way to think about this. I think that is one of the things that we face in special ed. as we try to work with families from very diverse backgrounds.

    Let me mention a couple of those underpinnings. I think the key thing, really, more than anything, is the scientific basethe belief in special ed. that we ought to be, want to be, are trying to be scientists, trying to take a scientific approach to our practice. Now what comes along with a scientific base? One thing that comes along with it is a belief in the physical rather than the spiritual. When I define a disability, it is a physical thing, not a spiritual thing. I find it really weird when I talk to a parent who doesnt want to hear about physical stuff or physical remediation. They want to hear about spiritual remediation. They want to define the kids disability or the kids condition in terms of something totally spiritual, nothing to do with the body. But thats not what we are into as professionals. It was very interesting, because I did a presentation in Hawaii a year ago. I was talking a bit about this, and I asked people to raise their hands if they are shocked that a parent suggests that a disability is spiritually based, rather than physically. You know, not one person in the audience raised their hand.

    It was the opposite of everywhere else I go. It really told me something about the culture there. They have a very, very strong spiritual base. This was at a families conference, too. But normally, for most of us here, with the training weve had, we dont think of disability in terms of spirituality. It is a physical thing. So that is one of the things that goes along with a scientific base.

    Objectivity is another. We believe that we should do our darndest to be objective. So we try to measure everything, try to treat our studies as if they are all measurable and definable. I think all we have to do is think about mental retardation. Many of you here are probably trained in mental retardation. Im sure somebody can yell out real fast what is the current cut off point for mental retardation on an IQ score. What is the current cut off point, guys? 69 or 70. OK, lets call it 70. Does anybody know what it used to be? Of course, some people know what it used to be, a long, long time ago, like almost 30 years ago, what was it? 85. Eighty-five was the cut off point on the IQ score identified by the American Association on Mental Deficiency, now Mental Retardation, as the point before which one could be and would be and was described as mentally retarded. So when the American Association on Mental Deficiency, in its wisdom, and I dont mean that facetiously, when they changed that cut off point, in something like 1969 and 1970, from 85 all the way down to 70, what happened to all those people who were retarded the day before they signed that paper? They were cured, right? They were cured, no joke. Thats the truth. You couldnt call anybody mentally retarded after that if they had an IQ of 73. Im very sorry, no. Okay. I dont really want to say thats nonsense. What I want us to realize is how everything we do in education is a social decision. It is a matter of a social agreement about who gets to be called what. It is not a fact; it is not universally true or correct. It is really not even measurable, but we do keep trying to measure it. Im not saying that there isnt a vast range in peoples abilities, peoples skills, cognition, all the rest of it. There is a range. The question is at what point do we call a person disabled. At which point in that range do we draw that line and say, Okay, you are not normal anymore, you are over here? It is a social decision. It is a social decision.

    I think if we can just keep that in mind, and you keep that story in mind. You remember that IQ story,

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  • because then when a parent comes to you and says, What do you mean, you say my child is retarded? My child is not retarded. Instead of just saying the parent is in denial, how about another D word? How about disagreement? Maybe you will say, Okay, that parent disagrees with me. And maybe you can learn to respect that disagreement when you remind yourself that if in our own society we can change our definition overnight, then why on earth cant she have a different definition from me? So lets try to keep that in mind. These things are not universal. They are social agreements. So the scientific base and our struggle for objectivity is one of the driving forces behind the things that we do in special ed., and we need to be real careful about it. Im not saying we dont have to try to be objective. But we need to understand and remember the limits of that objectivity. We need to also understand and remember that subjectivity is also very important. And thats what parents bring. Parents bring a detailed, inside subjectivity to a view of a child that you and I, as the professionals, can never see.

    Another underlying set of principles behind our practice, besides the scientific base, is a bunch of principles that are very Western and specifically very American. Values such as independence and individuality, as opposed to a group orientation. A value on democratic behavior, as opposed to authoritarian behavior. Very much a mainstream American position, which I do believe has evolved over time. When we talk about cultures, it is really important to remember that cultures change over time. They are not static. They are not born from Gods head and stay that way forever. People develop them. Nowadays, we have a very powerful belief in democratic parenting. That is what is behind the anti-corporal punishment beliefs. Even just the way you speak to kids. If you watch parents in grocery stores nowadays, when the kid starts to act up, you can see the parents hesitation to speak too sharply to the child. Ive seen it all the time. Ive been there. Ive had it, too. I did it, because somebody is going to look at me and think, Oh, shes a nasty mother. She is not being nice. She is not supposed to talk to her child like that.

    I think it is relatively new. I think that is a couple of generations old. Thats what I would suggest. Those attitudes have come through the work of child psychologists in the post-World War era. Those beliefs have great strength, but they are not the only way. We

    tend to believe they are, because it is whats been taken on by the mainstream and whats been put out as the general beliefs for the general good. The point I want to make, then, is that our scientific base behind special ed. and certain key American values, such as individuality, such as democratic interactions, and I could list lots of others, very much direct everything that we do.

    I am going to give you an example of the idea of independence, and this is a piece from one of the books. This is a piece written by Maya Kalyanpur. In our first book, Maya and I introduce each chapter with a personal story, to try to show cultural experiences and cultural reciprocity. And here she is talking about independence. And Ill just read you what she said, quite a short piece.

    At the dinner party at my home, I noticed my American friends eyes grow rounder and rounder as she watched my Indian friendthats Indian from Indiasit her almost 4-year-old daughter on her lap and proceed to feed her swiftly and efficiently. Later my guest shook her head in amazement and said, My kids learned to eat by themselves by the time they were two. We Americans like our kids to be independent as early as possible. Then she continued, Speaking of kids, we need to be getting home soon. We have an early day ahead of us tomorrow. My husband is the baseball coach for our sons team, and I promised our daughter that I would watch her soccer game. Listening to her, I tried, and failed, to recall a single instance when growing up in India my parents played with me beyond toddlerhood. As soon as I reached an age when I understood the rules of a game and could be expected to share with peers, I played with other children. There were no parents on the sideline, cheering, keeping score, coaching. What a high level of independence was expected of us children, I thought. It struck me that parents in all cultures seek to make children independent, but the milestones toward that goal may differ.

    So what we are saying is yes, I think we probably would find that independence to some extent is universally valued, but what does it mean? How is it expressed from group to group, from culture to culture, and from family to family?

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  • I want to talk now a little bit about how some of these beliefs, the scientific base, and some of the values I mentioned affect our research. I am going to talk about qualitative research. I am not suggesting that quantification is not important. I am not suggesting that being able to analyze very large numbers and tease out correlations and patterns is not important. It is very important. But I think that quantification cannot get behind the numbers. It cannot tell you the why or the how of those facts. And so I do want to encourage today more and more of an interest in qualitative approaches to understanding family experiences. I am going to give you some examples. The first thing I would say about qualitative research is thatyou know that movie, Up Close and Personal? It is up close and personal. And based on that I am going to show you some of the strengths of that up-close and personal aspect of qualitative research. And I am also going to point you to some of the challenges, some of the difficulties of up close and personal.

    Let me start, then, with the advantages. I would list four. I could list heaps, but I will list four just for us to focus on a bit here. I would say, first of all, qualitative research seeks the insiders perspective. It seeks multiple definitions, multiple recommendations, from the points of view of the insider. And you never really realize that you are an outsider until you listen to what somebody else says. If you just watch them, you dont really know. My mother has this little saying which I absolutely disagree with. You know how we disagree with most of what mothers say. She says, The outside sees most of the game. I say, Mom, that is not true. The outside sees the patterns. You watch the game, you can see who kicked the ball, who ran after it. You can see the patterns. You get an overall view. You have no idea why. You do not know what the player was thinking when he made that play. You do not know who whispered to whom or who gave a signal to whom to get that particular play going in another direction. So you dont know. You see the pattern but you dont understand, dont know what it really means. So qualitative research really can seek and does seek the insiders perspective.

    Secondly, qualitative research can respond to these multiple perspectives because it is not fixed ahead of time. When I write a project, a proposal for funding under a competition that Tom Hanley, for instance, is in

    charge of, it is a real challenge to write that proposal in a way that shows that you know what you are going to do but that you are still flexible, you are still open. It is hard to do, because the reader wants to know, Wait a minute, wait a minute. Is this just all play? Is she just all fuzzy? Is she out of whack here or does she really know what she is doing? But there has to be a balance between knowing where you want to go and figuring out exactly how you are doing to get there. And this approach to research gives you the opportunity to be responsive to the field. To be responsive to what parents are telling you. You dont have to define it all up front. That is the second thing. It can be, then, reciprocal, a form of research that can actually be reciprocal.

    The third point I would make, a strength, is that qualitative research can acknowledge and, in fact, certainly seeks individual as well as cultural details and differences. The main advantage of that is that you can avoid stereotyping. When you do a quantitative study, you do a survey study, you have to call everybody something. If you are looking at socioeconomic status, for instance, you have to have a definition. You say, under $10,000, over $25,000, occupation, whatever the criteria are, you have to define it up front. We all know that socioeconomic status is one thing, but peoples perceptions of social class is quite another. A lot of people you talk to, a particular definition would define as working class or even as lower class, will define themselves as middle class because they are concerned with middle class values. They are not really so concerned with the measurable thing. And the people in their community would describe those folk as middle class. You go in with your model and your numbers, and they arent middle class. So the insider definitions, again, come into play.

    The same thing with ethnicity. When you do a study and you want to look at ethnicity, you have got to call everybody something. You are going to be Black, you are going to be Brown. No, we dont have Brown. We dont have Brown in America. You are either Black or you are White. Anything in between we dont acknowledge that; it doesnt exist. Or you are Asian, which, of course, is not an ethnic category at all; it is simply geographical. Or you are Hispanic, which has nothing to do with race whatever. In fact, it is also a cultural thing. So we are all in a mess over it, and yet we

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  • have to get these labels, just because how can I classify, how can I do a quantitative study if I dont classify? How can I classify if I dont have a label? And I have to decide who is going to fit under that label. When you get out to talk to people, you find it doesnt work that way. People define themselves in all kinds of ways. The American way of defining race, for instance, is very, very different from many other countries, any other culture. So qualitative research can get past the stereotypes. I can get to find out what are the mixtures, what are the complications? What is the morass, what is the mess? What is the fuzziness? And then we can get in there and try to sort it out rather than pretending that everything is black, white, brown, or gray, or whatever, and I know it all ahead of time. Thats a third thing it can do; it can break through stereotypes by getting details of definitions of cultural differences.

    And fourthly, I would say a great strength is it can develop the fields awareness of the impact of the researcher on what he or she is studying. In qualitative research you dont have to pretend to be using an instrument that is neutral. There is my questionnaire, it is an instrument, you are going to check off one, two three, four, five on a Likert Scale, and I know exactly what you meant by that. Well, thank goodness, in qualitative research we dont have to do that. We can go back and interview the person five times. And of course, when we do that we find out, by the time you get to the fourth interview, the person is absolutely contradicting what they said in the first. Because that is human nature, thats how we think. Because our minds bring a lot of complexities, and we dont just think in categories. So that is another thing that this approach can do; it can develop the fields awareness of the impact of the research.

    I want to give you a few examples of each one of these advantages that I have mentioned. First of all, the question of insider perspectives, or insider definitions. One of the things that came out of some of my research has been an opportunity to describe what I call the parents theory of the problem. I did a study with Puerto Rican families, which was the book I published in 1992. It is called Cultural Diversity: Families and the Special Ed System. And I was very interested in many aspects of the Puerto Rican parents views. But I want to share one or two of them with you. One thing that came through very strongly is those families theory of

    what was going on with their kids. And the most fascinating thing about it was that their theories were very congruent with the dominant theories in the field from the big shot researchers, like Jim Cummings study of bilingual education and the relationship of bilingualism and special education. These parents were saying the same thing that Jim Cummings has been saying and spending his life writing books about. They had never read Jim Cummings, never heard of him. I wouldnt bother to ask. But they knew what he meant, because they had figured it out for themselves, just with their own experience. For example, they talked about the role of language confusion for bilingual kids and the difficulties of professionals in assessing the difference between bilingual problems, transferring from one language to another, and real developmental difficulties. They talked about reading. They talked about the need, for instance, for flexible approaches in reading. One woman, who I called Dora, had a daughter who I called Maria. And Maria had been in a special education class, classified as learning disabled. Her mother could not accept this learning disability label. She said, Yes, she is having trouble learning to read, but she is not disabled. She had trouble moving from Spanish into English. And Ill quote you some of the things that she said: When I started teaching her to read in kindergarten, the mother was the only high school graduate in that sample that I had studied, actually.

    When I started teaching her to read in kindergarten, I told her to read the whole word, and she was learning. But the way they are teaching her now is confusing her. All children are not the same. And she is not learning by this method. For one thing, it is only phonetics. And she became confused when she started school and had to learn to do everything in English. So she doesnt the understand the difference between the letters A, B, and C, which in Spanish would be Ah, Bay, and Cay, whatever, and the sounds you have to say in English.

    If they expected this child to read in English, it was not going to work. And in fact, when I looked at the classroom, it turned out they were using DISTAR [Direct Instruction Strategy Teaching Arithmetic and Reading], and nothing but DISTAR, which is absolutely phonetic. Now she went on and said:

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  • It is a very hard thing to understand. It is impossible that Maria could stay a whole year on the same reading level, especially when she had passed it the year before. As she was retained she got worse.

    A few years later I went back to visit Maria, and when I walked into their house, Dora greeted me, she said, Guess what? Maria can read. I said, What happened? She said, She got a new teacher. Sound familiar? She explained that the new teacher had taken a more balanced approach, had used both whole word and phonics and that Maria has responded really well to that.

    A few years later I did a similar study in the Baltimore Public Schools about African American parents of preschoolers who were described as having learning disabilities. And I found exactly the same argument from those parents, except with the opposite emphasis. Their theory was that they agreed with the Puerto Rican familiesit is a matter of teaching, it is not a matter of disability. But they came down on the phonetics side. And they said what the kids need, in fact, is more phonics. In an article that we wrote about the parents, we quoted the key definition of the African American parents for a good teacher. She doesnt have to be old, but she has to be an old-fashioned, good teacher. And they defined that in terms of a teacher who likes a structure, a teacher who does include a strong phonics base in their instruction, a teacher who in mathematics goes to the basics, makes sure kids do have those basics. One mother said to me, she said:

    Look, even now when I am in the store I can add things up as I go along in my head, because I learned it by rote. That new math, how can it be new math? All you have to do is teach it the same way I learned it in elementary school. How can you do long division if you dont know your multiplication? You cant do it.

    So again we have parents voices expressing theories that are very, very current in the field. Those of you who are looking at reading know that in this last year the National Research Councils report on the state of the reading, of research and reading, emphasizes the need for basic skills. They have come down very, very strongly. They say, in the early years, we have got to get the phonics and all of the structured decoding

    approaches into our reading instruction, within a context. They are trying to say, lets pull it together. Lets not throw out the whole language concept with its idea of context. Provide the context, provide the meaning. But instruct kids in the skills that they are going to need. The parents knew it all already. So this kind of research can get the parents perspective. It can get the parents voices into the debate. And these are parents, clearly. Both the Puerto Rican and the African American parents I worked with are parents who dont have access to published articles. I will tell you more about that in a minute. But one good thing about that kind of approach is that it demystifies scholarship, which I think is important. We need to demystify the stuff. It is not rocket science. There is such a thing as rocket science, but I am not in it. I dont know, maybe some of you are, but probably most of us teachers, and service providers are probably not into rocket science. We need to be into rocket art or something. We need to be into developing our practice as an art. Learning how to listen to people, learning how to respond, learning how to learn what they tell us. So it is very appropriate, I think, to use research approaches that will demystify the scholarship, by bringing in the voices of people who are not scholars, but as you said, who have learned from the university of life and know what they are talking about.

    The second advantage that I talked about then was that this kind of research can be reciprocal, and I will give you an example of this. One of the two books that I have coming out this month is a collection of eight case studies based on an action research project that I completed in Maryland a couple of years ago. The case studies, I think they are really lovely, because we were able to get most of the parents permission to write them in a very personal way. So we are actually using the kids real names, photographs of the kids and their families. It is just really nice and lively and very up close and personal.

    One of the stories in there is a story of a girl called Sylvia, Sylvia Navarro, whose family is from El Salvador. Sylvia has cerebral palsy. Sylvia came to the US at the age of 12, having never been to school in her native country. Not only had she never been to school, but her own family had never been to school. So her parents cannot read and write, either in Spanish or in English. Very, very intelligent people. These people were able to come here, work and work and work until

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  • they bought a little house. They owned their own house in a suburb in Prince Georges County, Maryland. Very small house, very beautifully appointed, very beautifully kept. Still cannot read or write, speak very little English. I was working with this family under the aegis of a study whose purpose was to examine families views of socialization of their kids and what they needed and to provide opportunities for the kids to develop socially and to evaluate those opportunities. So it was like an action research project, and we were going to evaluate what we were doing.

    The first day that I interviewed Sylvias mother, Roselle, I asked her, Roselle, what is your main wish for Sylvia? I had explained to Roselle that our purpose was socialization and social skills. Her first response, her immediate response was, I want her to learn to read. Sylvia herself came home from school, and I said, Sylvia, what do you want most right now? She came here at the age of 12, and she was assessed by an English-speaking, monolingual psychologist, who decided that she was multiply handicapped, severely retarded, placed her in a separate school for kids with severe disabilities, where she remained for two or three years until the school district developed a new program where they sort of creamed off the smartest from the centers and integrated them into the public school system. And Sylvia was among the cream of the crop who were fortunate enough to go the public school system. But by this time Sylvia was 16. Remember she had never read in her life. She had never been to school until she was 12. And then she spent three years in a program for severely retarded. So whatever functional reading approach that was being taken in her new school was just not going to cut it, just not going to get there, because she needed to go back to the beginning and to be taught to read like how anybody is taught to read. Sylvia said, You know what happened to me?

    It kind of slipped through one ear, stopped here for a minute, and I said to myself, OK, Ive got to talk to the teachers about that. And slipped out the other ear. And I did pay attention to when I talked to the teachers when we went to the IEP meetings, you know. Yes, they want to have Sylvia learn to read. But it never occurred to me to ask, could I make reading a focus of my action research project? Guess why? Because my action research project was for socialization.

    Reading isnt socialization. I am a special ed. person. Ive got to be thinking these little categories, academics, socialization, self-help sort of things. You know how we do it. We have it all sorted out, and my automatic way of responding was, Well, that is the teachers job, I guess that is not part of what we are going to do for socialization in our project. So we went on working on some other things, and over the course of the next year, I just kept hearing both Roselle and Sylvia echoing this point. One day, Roselle said to me:

    You know, Beth, the reason she has to learn to read is that everywhere we go, I am the one that has to take her, and I cant read. So we always have to depend on somebody. So she is just more dependent than ever, [more dependent] than she has to be because she cant read. If she could read, she would be independent.

    I thought, Thank you. Ive been thinking about independence, independence is the bottom line, one of the key things driving our socialization efforts for Sylvia. It didnt occur to me to see that independence was linked to reading. Finally I heard the woman; finally I heard her. So what we did in our action research project was started tutoring Sylvia. Well, we did two things. We provided tutors for Sylvia. We didnt have much money for tutoring, but we were able to use our own students, and Sylvia was tutored over a period of about two years. And her reading improved dramatically. Developed really quite well, I would say, about a second or third grade level, which was actually very good for her. It wasnt what she wanted. It wasnt what we wanted for her, but it was as far as we could take her. I tried to advocate for Sylvia with the school system as they planned their IEP goals for her, but this will take me to some of the disadvantages, the challenges, the difficulties in qualitative research.

    The main difficulties in qualitative research are also its strengths. You know how when you fall in love with a person, you fall in love with certain characteristics? And five or six years later it is those very same characteristics that drive you up the wall. The person is too rational, too emotional, whatever. Well, the same thing happens with qualitative research. The strengths I just mentioned have another side to their coins. And one of the big difficulties that we face is the researcher rolefiguring out what our role really is and how to do it well. For

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  • instance, am I, as a researcher, going to be an advocate, also? Am I going to be a service provider? Am I going to be a friend? As an advocate for Sylvia, I was not very good. I decided, okay, we always went to the IEP meetings with Roselle and Sylvia. And I spoke to the teacher ahead of time, and I said, You guys really have to put reading up there on this childs IEP because it is so important. Well, we were able to get them to do that, but in a very wishy-washy way. If I was not doing this research as a guest of the school system, I could have been an effective advocate. But as a guest of the school system who has to continue to be friendly with the teachers and to work with them, I could only do so much. Now there are some researcherssome of you may know the work of Concha Delgado Gaitan, who has done some work on the west coast with Hispanic families? She comes right out and says, Look, I am not interested in research anymore unless I can be an advocate, too. And she has sort of pushed it to the ultimate conclusion. I havent come to that point in my work yet, and I found it difficult to tread that line between advocate and researcher. Service provider, sure. We were tutoring Sylvia. We were providing those services for her. A friend?

    There was another family, also a Spanish family, who were from the Dominican Republic. A woman I became very, very friendly with. I spent a lot of time in their home, worked with their little boy, Raphael, who has Down syndrome. But we became friends with all the kids. We did a study, for instance, on sibling interaction, a study of sibling interaction between Raphael and his brother. So we became very close with all the boys. You know, when I left Maryland, I kept in touch with the families, because we had to do the book together and everything. But six months after I left, I was talking to Raphaels mother on the phone one day, and she started to cry. I said, Whats wrong? She said, Beth, everything has fallen apart. Can you imagine? Well, she wasnt talking about Raphael at all, who was my little guy that I was working with. She was talking about Benito, the big brother. She said, Ever since you left, Benito gave up. He doesnt want to go to college anymore.

    Well, all I had done was a couple of conversations with Benito about college, talked a little bit about it, given him some information about how to apply to get to college. I mean, it was not even extended counseling or

    anything, just occasional, yet somehow my input had been so important to Benito that my departure made it hard for him to keep that together. So one of the challenges again of the qualitative research is how to get that balance between doing the work and not becoming too important to families. Then the issue of which ball is on the field becomes a great challenge. Of course, what we really need to do there is to work with families in such a way that we share our expertise with them to the best of our ability so that they can become empowered yet not dependent on us. We did try to do that, but I still feel it is something that I didnt do very well. I have to come to an end now because I want to take 15 minutes to invite questions and give a couple of responses, but I would like to end by reading a little statement by one of the parents that I worked with. This is a woman named Ruth Coates. Her story is also in our collection of case studies. Her daughter is Carissa, who when I met was 2 , a child with Down syndrome. This mother is determined that her child will be educated in an inclusive environment. An African American family, very religious, very traditional, and yet not traditional enough to accept the traditional education system. Very traditional in their values in their family life, and yet very forward looking and very challenging of the school system. One of Ruths main points was the difference between professional enculturation and parental enculturation. What she was saying is if you are enculturated as a professional, thats the way you think. Just like when I was working with Sylvia, I had reading here and socialization here and everything separated out, whereas a parents enculturation is holistic, or brings the holistic of the child. And this is one of her biggest concerns.

    I am going to read you a little bit of a statement from her. Her greatest concern was that this specialist orientation of special ed. has contributed to the absence of a holistic view of children. So heres what she said:

    From the professional point of view, when they look at Carissa, they see a piece over here, a piece over there, this over there. Dealing with so many specialists and also dealing with me, finally I got to the point where I realized I had to take the role of saying, all of these people arent talking to each other. I am the one who is going to have to get them to talk to each other. This person is not concerned with this part of her. That person is

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  • not concerned with that part of her. So I developed this mission and this game that I played, to try to get them to think outside of the box of their own particular specialty. So it was her primary physician, her nutritionist, a cardiologist, her endocrinologist, her early intervention team, her physical therapist, the special ed. instructor. It was all of these people. But what happened was that I had to become the real service coordinator. I was the one who had to make sure that all these people talk to each other, or at least talk through me to each other.

    To do that we have to listen. Whether we are practitioners, teachers, anyone of those folks that she listed out on the team. Whether we are researchers, we all have to use methods that are going to allow us, and really require us, to hear parents perspective so that we can work together. And I wish you the best of luck in your listening. Thank you.

    I was absolutely advised this time that this audience would want to share with me, maybe want to challenge some of what Ive said or ask some questions or make some comments. So we do have 10 minutes. And Id like to invite you to do just that right now.

    Conference Participant: (Response not recorded.)

    Beth Harry: Absolutely. Are you a parent yourself? Was your child in the Individualized Family Service Plan [IFSP] process or older than that?. . . The IFSP process, as it is set up now, that is the early childhood, under Part C services, is the one that I think is managing to do a better job of what that lady was just talking about. Because in the IFSP process, at least we do have a focus officially on the family, and I hope it is working that way for you, rather than just services to the child. In fact, the mother that I just quoted, Ruth Coates, who talked about the holistic view of her child, was one who was very determined that in the early years, preschool years, her child would be in a regular preschool program. And when her child was two, she got her enrolled in the preschool program run by the church school where her other kids had gone. So she was able, before the child got to Part C services, to get the services delivered in the community-based preschool program. So that when it came to Part B, and the child had to transition, she said she had a really great case, because she had teachers, she

    had all kinds of people to come in and say, My goodness, this child is doing wonderfully. This child has Down syndrome, too. She is doing wonderful in this regular preschool. How can we withdraw these services? So she was able to push through to Part B and tried to get them to continue community-based services. And she was very successful. She was the first parent in that community to be able to get those services under Part B. But the thing about the IFSP process was that really it is much more responsive to the familys point of view and to what the family needs. And I think the change to Part B is difficult for most parents.

    I would challenge you when you go back to your situations to really look at that and to try to get more of the family focus that we have on the Part C into Part B services, too. Because whats the point, as Ruth Coates said to me, Whats the point? Ive got her here in the community, doing well, learning from her own regular little peers. And as soon as she hits three, they want to take her and put her in a special center. And really it was a very different approach to listening to the family. The Part B service providers were much less inclined to listen to the family. So I really would challenge you to try to develop more of a family focus on the Part B.

    Conference Participant: I have not left Birth to Three. There is family support, money is coming down. So there is a ripple from parents and professionals to the different funding agencies saying that anything that comes forward has to have a piece of family support in it. You have to be looking at it. You have to be doing it. So I really encourage everybody to go home and find out what is happening in their community.

    Beth Harry: I would just like to ask us for a moment to think about the other end of the spectrum, when kids become young adults. Because that is another time. You see, the school takes care of kids between ages 3 and 21, or whatever. But then adulthood, that is a time that we have to listen to families, especially if you are working with kids with moderate to severe disabilities. You have to listen to families. And we have to be able to value where they are coming from. Even though we may not always agree. In our research, in the case studies that I have been talking about, for example, we had the full range of parental visions of the future for their young adults. We had the Dominican family, Rafaels family. They had a family of nine kids. Rafael is about number

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  • eight. They would think me totally crazy, or anybody totally crazy, to even talk about a group home for Rafael. What are you talking about? Are you nuts? First of all, we have the system already figured out. His brothers will take care of him. I asked her which brother. She said, Well, the first one will for sure. Some of the others, they are still trying to figure out who they are. As she paused, her husband chimes in, he said, But no matter what happens, his brothers will never abandon him because they love him. For that family, the state taking care of their young adult would be abandonment. For that family, not for every family. But I have to respect that. And to the extent that that family in particular really has the structures in place, they can do it.

    What is more difficult, of course, is the family who holds that traditional view but doesnt have the structures in place. Because maybe there are only one or two siblings, or whatever. And thats the one that we have to give a lot more support to and help them to figure out how they are going to modify their vision so it can work.

    At the other end of the spectrum, we had another family, a very upper-middle-class professional family. The father was AsianChinese American, American born. The mother was a Caucasian American. They had two boys with severe disabilities, and they had already put everything in place for group home placement for the boys. The boys were 9 and 12 when we were working with them. They had a trust fund set aside; they had the whole thing set up. They were starting to check out programs for the kids for when they would become adults. They had a grown-up son, a bigger son, who was about four or five years older than the second boy. I asked them, Do you see your elder son as having a role in the younger boys care? and they said, yes. They said:

    He loves them very much. It will have to come down to him ultimately to oversee their care. But we dont want it to come down to him too much. He has his own life to live. But we know we can count on him, with his help.

    No less loving a point of view. I dont think it is any more loving to hold one position than another. The point is, people have different positions. And unless we as professionals can provide them with the

    opportunities to help develop those visions, because there are lots of different ways we can help any one of those families. I think to hear what they want and to figure out how to help them get it is more valuable than trying to tell them what they should want.

    Conference Participant: I want to go back to this part about labeling on culture and mental illness. In this country, you said there is only Black and White. I read a book where there was this small town where you were either White, Indian, or Black. There was no Hispanic, even though pretty much in this town, the majority was all Hispanic. But I wondered about that because in the book people accepted that if they are Hispanic, they are either White or Black. I want to get your view on if you thought maybe it was part of wanting to belong?

    Beth Harry: I am sure that is true. We all want to belong. We all want to know which group, which tribe we identify with. And that is very important. What I think, though, is that it is kind of a pity when a society defines tribes, ethnicitiesthe word ethnicity is from ethnos, which means a tribewhen a society defines ethnicity in such a narrow way that people must chose either/or, then it forces people to think they dont belong, where maybe they could. Maybe they could belong to two or three groups, maybe they could. I ask my students all the time, I say, Here is a White young lady. If you marry a Black man, or if you are a Black young lady and marry a White man, what is your kid going to be? And all of the kids, they just freak out. I mean, they just freak out; they say they never thought about it. And it is a panic, because, I am White, how can my kid be Black? I am Black, how could my kid be White? Of course, we know that traditionally in America you will be Black if you are not White; you dont have a choice. There are a lot of communities where that is not true. There are a lot of communities where mixture is acknowledged, and it isnt such a cut offyou are this box or you are that. Well, you are kind of mixed up. Everybody knows you are mixed up, and thats okay. You dont even have to get a new name. You dont have to call yourself multiracial or anything, really, because the fact is you are just who you are, and you have a little bit of this and that and the next. One part of it is going to come out more dominantly than the other, probably, but you dont have to absolutely deny it is there.

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  • So I guess I think it is just a pity that we are so classification conscious and so categorical in our way of defining groups, that if they choose this, they cant belong to that. I think that is really sad. I think we really need to work toward a more accepting, a more holistic view. I know it is complicated. I know that if we dont use our boxes, then we wont be able to do some of the redress that weve been trying to do for traditionally

    under-represented or under-served groups. I do understand the complexity of it. I am not trying to say that is not complex. But I think we need to work toward a more holistic view of everybody, rather than having everybody all separated out.

    Barbara Friesen: We thank you, Dr. Harry.

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  • Table of Contents

    Mary McCormack Dakota Enterprises 9345 SE Cambray Way Portland, Oregon 97266 Voice: 503-775-6253 Fax: 503-775-6462

    Kathy Kipp Kathleen BradyNapa County Health and Human Services 2261 Elm St. Napa, California 94559

    Mary Parker-Flett Susan LowrySonoma County Department of Health Youth and Family Services, System of Care 3333 Chanate Road Santa Rosa, California 95404

    Plenary Session: Family Members as Full Partners in Evaluation

    Nancy Koroloff:. I am pleased to introduce Mary McCormack. Mary is very well known throughout the country as an evaluator. Many of you know her because she has been to your state or to your site. Most recently she has been working with the Federation of Families to develop new ways and new materials to assist and support family members to be a part of the evaluation process. And by that I am really meaning a much more influential part of the evaluation process. We all know that, in the past, family members have been the subjects of the evaluation process. But now she is working with many family members and with the Federation to really find much more influential kinds of roles for family members to take as a part of the evaluation team. Ultimately, the idea is that the family members will be the leaders of the evaluation team, and the evaluators will work for the family members. So thats the vision. And today we have a great panel that is going to talk about at least one instance in which part of this vision has been realized.

    Mary McCormack: I want to start out by acknowledging some people who made this study possible. We actually owe this study to the vision of two people who are not here today.

    One of those people is Joan Lusney, who had the wisdom to say, You know, when we collect satisfaction data, we really have no idea what it means. Actually, Joan was an interagency council in and of herself. She was the person who was the head of public health and child welfare and mental health.

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  • But, as the head of the system of care, she was one of the people who had the vision that this study should go forward, and it should be done by family members talking to other family members about the services that they received.

    The other person who was really influential in getting this study done, who is not here today, is Marjorie Helms from Sonoma County. She was the person within Sonoma, the end of their system of care, who really supported the research and our ideas and supported having family members do our research.

    We were also funded by a couple of different organizations to do this research. And one of the questions people have is, Did you pay parents to participate? And did you pay the parents who were the data collectors? And fortunately, in this instance, we can say yes to both of those things. The National Resource Network for Childrens Mental Health, funded by the Center for Mental Health Services, and out of the Washington Business Group, provided us with the funds to pay our family members who collected data and then also pay the family members whom we got the data from. So that was a great benefit for us in doing the study. The second group that funded us was Portland State University, who, with absolutely no reason to take an interest in this study, said, yes, they would give us some money for my time and for data analysis, so I could spend time with our data collectors in California on a fairly regular basis. So both Portland State and the National Resource Network funded this study as a special project. We greatly appreciated them being able to do that.

    I want to take you back to that moment that we were trying to study. At the beginning of our study, which was in September of 1997, one of the things we were interested in was looking at services that families received. We wanted to look at families who had been receiving services for a period of time. However, the system of care in both counties was relatively new. So what we actually studied was a very early implementation phase of a wraparound philosophy. And some of what we observed and were told in interviews is a result of the phase of implementation that we were studying. We heard things about wraparound being more associated with flexible funds than with the ideas around service delivery. Some of that got worked out

    over time so that people understood wraparound differently. But because we were studying it early on, some of that stuff was not clear to people at the time. So when you hear some of the results, know that what you are listening to is something in the past and particularly a developmental phase within a system of care. That is one important thing to know.

    Our study is a study that has many different facets to it. Really as I said, its inception was in wanting to understand how families experience services. In both Napa and Sonoma, they were using an 8-question satisfaction survey. It was an attempt to find out how families felt about services. And, in implementing that survey, one of the clear things that they were learning in both counties is that families were satisfied with services, but nobody knew what services they were satisfied with or really what was going on. Nobody had any idea of what the meaning was behind the data. So both Marjorie and Joan asked if we could find out what that experience really was. We decided that, in order to get the best data possible, we would have family members serve as the interviewers of the study. Those are the folks that you see sitting up here, our interviewers.

    We began with a child who had been in services for a period of time, at least six months, identified that child, and interviewed the child if the child was 11 and older. We interviewed the childs parent or parents. If they had a parent advocate, interviewed the parent advocate, and interviewed the care coordinatorthree or four different people, all associated in the same group of services. In doing the study, about 148 people got interviewed, which is lots of interviews, if you havent done them. We convinced Dawn and Susan, who are from Sonoma, to collect the data there, and Kathleen collected the data in Napa. Mary collected the data also in Sonoma. Kathleen actually collected every piece of data that we have from Napa County, which I believe is a record. So we appreciate her efforts in particular in making this study a reality.

    When we set out we didnt know what we were doing, which is both a truth and somewhat of an understatement. I think the way in which our presentation is framed today is something about full partnership. And the way we also thought about it was something like slouching toward partnership. We were trying to get

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  • there, and as we were going through the process of doing the study, we were learning how to include family members as partners in the research process. And this adventure taught us all a lot. It not only taught us about the research questions we were looking at, the experience with services, but it taught us about what it is like to ask family members to go out and interview clinicians and take on a very different role. It taught us what it is like to have people who have not been formally trained in research methods transcribe interviews and use technology that they are not familiar with. It taught us about this entire socialization process into doing research.

    So what we have out of this study is a picture of services at a particular point of time in Napa and Sonoma counties. We have the results of what people felt about those services. And I think, most importantly, we have an excellent case study of what the experience of family members participating in the research process has really been like. I think that what we have been able to do in this study is move beyond the idea that you can send family members out, and they can ask particular types of satisfaction questions, and that those should be closed ended, and you can do it in a really controlled way, because you will hear about the environments they did the interviews in, which are not particularly controlled. That is actually a vast understatement, because we had people go into families homes and interview them, or go to restaurants, or go to wherever the family wanted to be interviewed, and do the interview. So we have some remarkable tapes that include animals and children singing and various other things that we have been able to capture over time. I think a lot of what weve learned in this process is how to include family members and what evaluators need to do in order to change the way we approach our work, so that we rely on the expertise of families as opposed to treating family members as if they are the subjects of our research.

    With that said, Im going to tell you just a little bit about our panel here. Kathy Kipp, from Napa County, who has the unusual function of being both the evaluator and the fiscal person within her system of care. Kathy coordinated the evaluation on the local level for Napa County. So there were really two people who functioned at the local level to provide support

    for the evaluation and then also to make sure that the money was flowing smoothly and all of the housekeeping stuff got taken care of.

    Mary Flett is a clinician and has also worked on the evaluation team in Sonoma County as part of the system of care. Mary did a lot of interviews in Sonoma County for us, and obviously if what we were asking family members to do was to go out and talk to people in a very different role, we were also asking Mary to take a different role and to go and meet with people and talk to them, not as a clinician, but as an evaluator, which is quite a different task to take on.

    Dawn Hensley is from Sonoma County, and she is the head of the Family Partnership in Sonoma County. Yesterday, she described her role as co-conspirator, which I think is a nice way to describe her role in many ways. She helped the study get off the ground and supported it and was able to talk to people within the system about why it was important and why we wanted to hear from family members outside of the formal evaluation. And she was also able to do a couple of the interviews for us, which was extremely helpful.

    Kathleen Brady is the person I said who is from Napa who did all of our Napa interviews. Kathleen has been very helpful to us in being able to talk about what it has been like to have never done this kind o