Entrepreneurs of meaning: parents and the process of inclusive education education.

INCLUSIVE EDUCATION, OR THE INCLUSIVE SCHOOLS movement, has been described and discussed in the educational literature for more than a decade (Brown et al., 1989; Meyers & Blacher, 1987; Stainback & Stainback, 1984; Stainback, Stainback, & Forest, 1989). Defined as the placement of students with disabilities in classrooms with typical-age peers, inclusive education represents one approach to special education reform. As educational philosophy, inclusive education has two central features: moving students with disabilities into general education classrooms and providing special education support services, such as speech therapy, in those same classrooms (National Association of State Boards of Education NASBE , 1995; Stainback & Stainback, 1984). In this view, special education is not a place, but instead a set of services, which can and should follow a student with a disability into the student's neighborhood school setting.

There are significant differences from state to state and from district to district in the placement of children with disabilities in general education classes (U.S. Department of Education, 1996). In some school districts, students with disabilities attend separate classes, sometimes on separate school sites. Children in these classrooms are grouped by age and/or by disability and are taught by a teacher with a special education credential. In contrast, an inclusive model supports students with disabilities in their neighborhood school, in the same classroom with their peers without disabilities. Students with disabilities are taught by a general education teacher, with additional support services provided in the classroom by special educators.

Advocates for inclusive education argue that it benefits all children--those with and those without disabilities. For the student with disabilities, inclusion offers both social and academic benefits. Supporters point to improved academic progress and communication skills, increased appropriate behaviors, and the development of friendships (Hunt, Staub, Alwell, & Goetz, 1994; Kennedy & Itkonen, 1994; Ryndak, Downing, Jacqueline, & Morrison, 1995). Students without disabilities also benefit; not only do they develop more tolerance for diversity, but many reap academic rewards as well (McDonnell & Kiefer-O'Donnell, 1992; Staub & Peck, 1994-1995). Advocates point to collaborative planning, curriculum modification, and other practices that have emerged from inclusive education as valuable ways to help all students (NASBE, 1995; O'Neil, 1994-1995). Inclusive education continues to be controversial, however. The past president of the American Federation of Teachers, Albert Shanker, was opposed to the idea of inclusive education for all students regardless of their disability (Shanker, 1995). Within the field of special education, Fuchs and Fuchs (1994) charged that the inclusive educationists are a radical voice advocating primarily for children with severe intellectual disabilities, a group that constitutes about one tenth of all students with disabilities. Additionally, some advocates for children with disabilities are also critical of attempts to end the "continuum of services" and have pushed for a range of options, including inclusive education and segregated special day classes (O'Neil, 1994-1995; Rimland, 1993).

Our research builds on scholarly work within sociology and education. In sociology, disability studies is a growing area of interest, and many scholars have focused attention on relationships between children with disabilities and family members (Bodgan & Taylor, 1989; Ferguson, Ferguson, & Taylor, 1992; Goode, 1984, 1994; Harry, 1996; Perry, Sarlo-McGarvey, & Factor, 1993; Traustadottir, 1993; Ziolko, 1993). By considering how parent perceptions and attributions influence the choice of inclusive education, our analysis adds to these earlier studies.

Within the educational literature parents are acknowledged as key actors in the process of inclusion, yet research on their involvement is limited primarily to their perceptions of the benefits and drawbacks of inclusion (Guralnick, 1994; Hanline & Halvorsen, 1989; McDonnell, 1987; Ryndak et al., 1995; Westling, 1997) with little elaboration of parental decision making. A notable exception is a qualitative study by Erwin and Soodak (1995) that focused on nine parents who faced prolonged and significant challenges to an inclusive placement and suggested that parents often become unexpected advocates for their children. Our analysis expands on this study by analyzing parental involvement in settings where parents do not meet overt resistance.

The inclusive education movement challenges ideas that are taken for granted about educating children with disabilities and contains a unique set of values, goals, and assumptions. But how does the discourse of inclusion mesh with parents' goals for their children and the realities of the school setting? This study provides a starting point for understanding inclusion as a cultural product that parents are introduced to and wrestle with as they try to meet their children's educational goals.

METHOD

Data for this study were gathered through semi-structured interviews with 20 parents: 2 fathers and 18 mothers (1 of whom had 2 children who were included). Interviews lasted approximately 1 hour and were tape recorded with the participants' permission. An interview guide was used that covered three main areas: information about the child and his or her disability, the decision to fully include the child, and the parents' assessment of that process. Questions were open-ended to allow parents to explain, in their own words, their involvement with inclusive education. Typical questions included, What did you know about inclusion prior to (your child) attending (his or her school)? What factors led to the decision to fully include your child? Describe the steps that were taken to include your child. Describe a typical school day for (child's name). How would you define inclusive education or explain it to another parent? Probe questions were used to elicit additional information and to clarify responses.

A central assumption of a qualitative research design is that human behavior is tied to subjective interpretation of the social environment (Bogdan & Taylor, 1975; Kollock & O'Brien, 1994). We believe that the decision to opt for inclusive education takes place within a particular interactional context and is influenced by parental beliefs and attitudes about inclusion and one's child. Thus, parent interviews not only reveal a justification for action, they also describe meaningful elements of the social context--in this case, the school environment. A qualitative research design allowed us to understand inclusion as a process and not reduce it to a set of variables.

We did not attempt (nor would it have been possible) to draw a representative sample for our study. In school districts in our area, the population and demographics of children who are included is constantly changing, and children over time may move between special day classes and inclusive settings. Additionally, our goal was not to analyze inclusive education as experienced by all students, but to understand the experience of a particular group of parents: those who actively seek inclusive education for their children. We therefore looked for parents who had recently (within the past 2 years) initiated the process of inclusion.

Study participants were drawn from 10 school districts, representing 21 school sites, in a large urban county on the west coast. Participants were identified through a variety of means. Flyers that explained the study and asked for participants were sent to two branches of a family resource center and to the local cerebral palsy association. A notice was also placed in a monthly newsletter for parents of children with Down syndrome. Additionally, three itinerant teachers, serving children with a variety of disabilities in inclusive settings, were given flyers and asked to give them to parents. Finally, some parents were referred to the study by other parents who had been interviewed. Each participants was compensated $50; interviews were arranged at the participants' convenience, usually at their homes.

Each of the children represented in this study received special education services and qualified for these services with the label of developmental disability in the state of California. Included in the study were children with autism, fragile X syndrome, Asperger's syndrome, Down syndrome, cerebral plasy, and mental retardation. Children ranged in age from 6 to 17 years; 17 (80%) of the children attended elementary school, 2 (10%) attended middle school, and 2 (10%) attended high school.

Each interview was transcribed and was approximately 24 pages in length. The researchers independently analyzed the data for themes (LeCompte & Preissle, 1993). Each researcher independently categorized the data into broad areas and highlighted quotations and examples that supported each category. Theoretical constructs emerged during this process of data analysis, specifically parents' construction of expertise in inclusive education and their position as unexpected advocates or entrepreneurs of meaning (see Glaser & Strauss, 1967, for a discussion of grounded theory).

Discussion on each theme continued until consensus on each item was reached. Each of the themes was then named, explained, and exemplified with quotes from the transcripts. The researchers agreed on the selection of final themes and representative quotations.

A concern in a qualitative study such as this is whether or not the investigators have presented the social world of the actor as the actor himself or herself sees it (Neuman, 1997). To address this problem, we sent a draft of the completed analysis to five study participants and discussed the findings with them. Their verbal responses helped us to clarify some points and assured us that our analysis was reflective of their experiences and evaluations. In addition, we shared our initial findings with seven parents who were not in our study but had children who were included for their entire school day, during a school-related meeting. Parent feedback in this context helped to refine analytic points and consider additional areas of inquiry.

FINDINGS

Findings from the 20 parent interviews indicate that parents obtain information from a variety of sources before making placement decisions, work to gain access to the general education class environment, and then work to ensure the ongoing success of their children in general education classrooms. When their children accessed the general education classes, parents realized that their role in the school continued, that they could define their experience differently, and that many benefits and challenges appeared. Each of these themes is explored further below.

CONSIDERING THE GENERAL EDUCATION CLASS ENVIRONMENT

The majority of parents (80%) reported that the first information they had about inclusive education came from conferences for parents of children with special needs, parent newsletters, and preschool teachers. Only four (20%) of the parents learned about inclusive education by seeing it in
practice. The process for most parents involved hearing bits of vague information about inclusion over a period of time ("it's a new way of doing things," "they put children in regular classrooms"). This information was predominately favorable and emphasized the potential benefits to students. A typical response came from a mother of a first grader with autism:.

I heard about it a lot, but it took a long time before it finally sunk it. I heard about it first at a conference ... a parent on a panel talked about her daughter. She said they tried everything for their daughter, and she saw her slowly slipping away more and more, and when they fully included her, suddenly she began to talk. When I heard her talk it was like something snapped ... I attended more conferences and heard more about my legal rights and I talked to a university professor--and I read a lot.

A parent of a child with Down syndrome added, "I started hearing about it when my daughter was in preschool. I started reading about it, and I went to some conferences, so I had the idea that people opened their arms to it.".

As these responses suggest, parents' decision to fully include their child often involved a period of time in which parents gathered information about general education class placement and assessed their children's needs in relation to this placement.

DECIDING ON THE GENERAL EDUCATION CLASS PLACEMENT

When asked why they chose to fully include their child, most parents described a variety of academic and social benefits, and the belief that their children would make more progress with academic and communication goals in a general education classroom setting. The parent of a child with autism explained her reasons for pursuing inclusive education:.

He learns differently than other kids. ... I went to special education classes but I didn't feel they were right for him. There weren't any typically developing peers involved in the program. (What is he getting from typically developing peers?) Socialization, language, he's academic in some areas and he has the best chance of succeeding here.

Another parent focused on social and communication goals for her son:.

He is warm and affectionate, and a little bit hyper. He has a very difficult time expressing himself clearly, but he has a great desire to be around people. ... I thought he would make friends (when he was fully included), he would communicate better, and that we could build on his strengths.

In describing inclusive education, many parents also talked about the necessity of preparing their children for a future that will include work and a life as part of the community. The mother of a teenager explained her expectations of inclusive education:.

My son's goals are to become independent, he tries to do a lot of things independently. ... Before (in a special day class) he never came home with homework, I didn't feel they pushed him to the extent that they should have pushed him. ... I just decided that I need to do what I feel I need to do and to help him accomplish his goals. ... I want to make sure he's going to get what he needs when he gets out in the world.

GAINING ACCESS TO THE GENERAL EDUCATION CLASS ENVIRONMENT

Prior to their family's advocacy for inclusive education, most children in this study were bused to special education day classes in schools several miles from their homes. When parents learned of their children's right to inclusive education and advocated for it, three parents were still encouraged to accept a segregated placement by school district officials. The parent of a second grader explained:.

We had a meeting and I just told them "we want to fully include Peter next year." And their mouths just dropped, which I expected, and they immediately started telling me it wouldn't work and what Peter can't do. ... And then they called another meeting. At it was the special education teacher, the physical therapist, the program specialist, the speech teacher, and they all said it was a bad idea ... they wanted to do baby steps, mainstreaming. And I did more research and I went back to them and called another meeting, and I brought my family and friends, and some professionals and the parent of a child who was fully included. Even my grandma came. They decided not to fight it--they saw I was serious.

The parent of another child with multiple disabilities explained the school district's reaction to inclusive education:.

His special education teacher just blew up and yelled at me. She said, "your child is mentally retarded, severely mentally retarded, you need to slow down, you push him too much." ... These people (at the district) kept saying to me, "No, you don't want to put him into anything that challenging because you'll damage his self-esteem." I told them it (inclusion) was going to happen, and eventually they decided they weren't going to be able to talk me out of it.

More commonly, overt objections by the school district were not expressed, and parents started the process of inclusion by contacting the neighborhood school, talking with the principal, and meeting with teachers. Usually the school staff expressed few if any concerns about having a child included, yet they conveyed to parents a lack of familiarity with the process. It is within this context that most parents acted. The mother of a child with autism described the steps she went through to have her child included:.

I wrote a letter of intent. This was all new to them, this was a new situation for them, and for me. In my letter I set out the reasons I thought this was best for my son. We had a meeting and I would say there was some hesitation on their part about how this was going to work out; one of the teachers was concerned about whether he would be too stressed.

Another parent of a child with autism explained what happened when she and her husband approached the neighborhood school. This school had just opened, there were no special day classes planned for the school site, and their son would be the first and only student with significant disabilities to be educated full time in general education classes:.

We wrote the principal a letter and told him about Jacob and asked him if he would be willing to try it. And he said he would, but he wouldn't give any guarantees. We met with the teacher he was going to have in the summer, and we said if we're going to do this we need to plan. And they agreed, so we met with her (the teacher) and we helped arrange the room, we gave her suggestions about that. We worked together, the teacher, the resource specialist; it was a learning experience for all of us.

Most parents approached schools in the spring, near the end of the school year. However, two of the parents interviewed spent more than a year preparing the school site for inclusive education:.

In November, we said, "What do we need to get him in inclusive education?" I had people come out from the university and talk with the principal and offer their support. ... What I always like to do is prepare. I could have done it (inclusive education) this year, but I'm being a fair parent, and I am giving them time to work things out and get things going. I think if we start this month (January) getting things going and getting prepared, then by September we can be ready for inclusive education.

What does preparation involve? Parents described a number of things that they felt needed to be addressed prior to beginning inclusive education, including developing curriculum modifications, ensuring that aides and other support staff were available, making the classroom wheelchair accessible, introducing the child to the teacher, setting up the classroom, and training the teacher, aides, and other staff. The mother of a 7-year-old shared her involvement in planning for her son's placement:.

I met with the resource specialist and the principal, and then the teacher was chosen. In the summer, before school started, I took him (my son) to the class several times and we met with the teacher and my husband and I helped arrange the room, and where the desks should be placed, and who should sit next to him.

REMAINING INVOLVED IN THE GENERAL EDUCATION CLASS ENVIRONMENT

As these accounts suggest, parents felt the need to be involved in the details of their children's placement in part because school sites were so unfamiliar with inclusive education. Although educators seemed supportive and were often encouraging, parents commented that there was rarely a contact person within the system to facilitate inclusive education. Parents were often placed in the position of advocate.

This finding is in keeping with other studies of inclusive education in which parents reported receiving emotional support and information from educators, but still found themselves having to be actively involved in setting up programs, including inservice training (Hanline & Halvorsen, 1989). The following account from the mother of a child with cerebral palsy illustrates a typical range of parental involvement:.

I felt the special education class left something to be desired; it could be a lot richer. We called a new IEP with inclusion as our goal. And the district contacted the school and they assigned an itinerant. But I was the one that said, "Let's talk about what equipment he needs, can we talk about what teacher might be best for him, can I meet with the administration at the school site?" Although there was supposedly an itinerant to arrange things, I had to tell them (the school site), "You need to find out about bathroom facilities and we'll need an aide." On the whole, in terms of schoolwide information for teachers, there has been nothing. Any specific information they have about Tom has come from myself or a handout about inclusive education that I shared with them.

In this child's school district, itinerant teachers are assigned the task of monitoring the educational program for students with significant disabilities who are included in general education classes. The job of the itinerant teacher involves coordinating special education services in the general education setting, modifying the curriculum, supervising any aides that are assigned, and acting as a liaison between the school site and parents. At the time of interviews, the average itinerant supported 15 students distributed over as many as 7 different schools. A consistent concern parents expressed was about inadequate itinerant support at their children's schools. Inclusive education in other districts is supervised by resource specialists, but with similar problems. Only 1 child in this study was placed at a school with a special education teacher who worked in tandem with the general education teacher and fully supervised the inclusive education placement, including curriculum modification.

Many parents took on a coordinator role in their children's placement. In addition to meeting with teachers and resource specialists, they also met with occupational therapists, adaptive physical education teachers, speech therapists, and others providing services to their child. Erwin and Soodak (1995) pointed out that inclusive education discourse initially emerged from ethnical and civil rights arguments, but now focuses on strategies to support students in inclusive placements. This is consistent with other studies, where the issue of support in an inclusive setting is a central concern expressed by parents of children with disabilities (Erwin & Soodak, 1995; Guralnick, 1994; Westling, 1996). Lack of appropriate support may act as a barrier to parents' selection of inclusive education as a placement option. Additionally, lack of adequate support services may complicate, or even jeopardize, the placement of a student with disabilities in the general education class. The parent of a child in middle school shared her thoughts on making inclusion work:.

People don't understand that inclusive education takes a lot of preparation, partly in understanding what inclusive education is, how to have him (the student) be a part of the class. They had never dealt with a child like mine, they needed to learn where he was coming from and what he could do. They needed to train the aide and to communicate to the aide and teacher how to work with this child.

The mother of a child with Down syndrome described the challenges she has faced with inclusive education:.

It's a tough road to take because it is not understood. You are going against the norm, you're fighting. And you question yourself--whether you are doing the right thing--you're never just relaxed.

ENTREPRENEURS OF MEANING

Parents' responses revealed that they actively plan for inclusion. In the process of deciding not only on inclusion, but on where inclusion should take place, they begin to be involved at all levels of the placement. In the process, they construct expertise, become experts on inclusion, and frame the general outlines of what inclusion should involve. In his book Intensive Care: Medical Ethics and the Medical Profession, Zussman (1992) described the tension between the "culture of patients' rights" (p. 11) and the "culture of the medical wards" (p. 12). Zussman used this distinction to point out the gap between the rights movement, with its focus on abstract ethical issues, and the actual ways in which medical decisions are made in hospitals. Zussman's study of applied ethics explored the difficulty of integrating new values and ideas into existing social institutions.

At the school setting, parents attempt to facilitate inclusion in many ways, including modifying their children's curriculum, helping out in the classroom, and providing material on their children's disabilities to teachers and aides. Additionally, however, they try to educate people about inclusion, and this involves explaining the goals of inclusion and the means for achieving an inclusive classroom. The effort involved in trying to achieve inclusive education was commented on by the majority of parents, including this parent of a child in middle school:.

It (inclusive education) is so time-consuming and you have to keep explaining yourself ... what you want, to other people. And you have to explain yourself a number of times. You have to show this person what you want done in the classroom. I wish there were a professional who could oversee the kids that are trying to be included.

Data from interviews suggest that parents who pursue inclusive education become "entrepreneurs of meaning": They attempt to bridge the chasm and resolve the tension between the culture of the school site and the culture of educational leadership. As advocates, they push to have their children included and then work to create and re-create the meaning of inclusive education in the classroom. The management of people and information is illustrated in the following account from the mother of a child who has been educated full time in general education for more than a year:.

I don't think the model of inclusion is the same; I think it's different everywhere you go. I felt when we were going into the school and they had never done it before, we were all going in together. This is scary. They're not experts. We (the parents) are the teachers of the teacher, teachers of the therapists. If there is a problem, they call us. We do a lot of educating; really it's more repetition than anything. I just keep pushing and pushing, you know? What is hard is getting everybody prepared for him (my son), but it's an investment and I'm hoping that over time, as each grade moves forward, they will know what they need to do for Chris.

DEFINING ACCESS TO THE GENERAL EDUCATION CLASS AFTER EXPERIENCING IT

Parents describe inclusive education in a very consistent way and often contrast it with mainstreaming. They believe that all children should attend school together, that inclusion benefits all children, and they often named specific benefits for their own children. Describing the meaning of inclusive education, one parent of a teenager compared it to mainstreaming:.

I don't like mainstreaming, I think it's a big difference from inclusive education. Mainstreaming to me means that you get to come over to our stuff for a little part of the time, but you don't belong here and we'll pick when you can come be with us. And inclusion is just the complete opposite--you're going to be with us all the time, and we're going to bring extra help in for you when you need it.

A parent of a child in middle school continued:.

I'm an idealist, and my perspective of what inclusive education is means there's no word for inclusion. It means that my kids go to school, and whatever the child's needs are, they get met by the professionals at the school. All kids go to their neighborhood school.... I'm really honest with people, and if they have a child, I tell them the benefits that have happened with our child, and I tell
them it's a tough road to take.

REALIZING BENEFITS FROM ACCESSING THE GENERAL EDUCATION CLASS ENVIRONMENT

Although the majority of parents believed that their children have benefitted substantially from inclusive education, they acknowledged the difficulty of incorporating the philosophy of inclusion into their children's schools. One parent described her son's experience with inclusive education over the past 2 years, noting the improvements he has made in communicating, in his academic work, and in his social skills. She believed that the benefits of inclusion have also extended to teachers and other students. Despite this, she recognized many problems:.

I don't feel the school district really supports it, and yet they want it. It's a lot of work for the parent. The worst thing is that the system is really not functioning as well as it should or could, and maybe it never will. Tom has been ignored, and excluded, and denied. And whether intentionally or unintentionally, that's been really hurtful. And sometimes staff just did not understand, did not know the law, did not agree with the philosophy, or did not understand or were just ignorant.... Our whole society talks about diversity; this really challenges the meaning of diversity.

Her comments reveal an important dilemma parents face: they want to see their children, and yet they often must place their children in school settings where staff members are unprepared for inclusion. Rather than confront outright hostility, parents instead face a system that tolerates inclusive education, but in their opinion, does little to embrace it. Interview data suggest that parents meet that challenge by becoming actively involved in the school site, educating others about inclusive education, and coordinating the work of many service providers. The mother of a child with Down syndrome shared her perspective and her belief that inclusive education remains a philosophy that has yet to be institutionalized:.

Each year we have to start it (inclusive education) over--sometimes, twice in one year. Because every year you deal with a new person, it's new to each individual teacher, it's not something that the individual teacher has been exposed to.... And it's really hard to try and talk people into something they are nervous about. Here, it's not accepted yet. As a parent I find that I have to continually simle and say, "I'm here to help you; let's work together and make it work." I take it one day at a time.

DISCUSSION

This qualitative study contributes to the growing body of literature regarding parents' attitudes, beliefs, and perceptions on inclusive education (Galant & Hanline, 1993; Guralnick, 1994; Meyers & Blacher, 1987; Ryndak et al., 1995; Westling, 1996, 1997). We analyzed the chasm between the ideology of inclusive education and the reality of student placements. In parent interviews, a tension is revealed between the ideology of inclusive education, which is embraced by parents, and the actual practice of having a child included. The promise of inclusive education contained in the "culture of educational reformers" competes with the "culture of the school site." Parents and their children may be caught in the middle.

The culture of educational reformers focuses on the opportunities that inclusive education offers to children with and without disabilities. Descriptions of inclusive education heard at conferences for parents of children with disabilities stress the ways in which inclusive education can more effectively meet a student's needs. Additionally, parents are introduced to the features that make inclusion work, such as curriculum modification, cooperative learning groups, and flexible learning environments.

In contrast, the culture of the school site is informed by the day-to-day demands of educating often heterogeneous groups of children within a limited educational budget. At the time of the interviews, most children were placed in classrooms with at least 30 other children. In addition to such large class sizes, educators face the challenges of meeting the diverse needs of children with a variety of language backgrounds, social class differences, and perceived abilities. At school sites, administrators and teachers may have received little if any information or training about inclusive education and view it as yet another demand on school personnel.

In what ways has public discourse about inclusion been translated and integrated into the everyday lives of children with disabilities and their families? Interview data suggest that teachers and school administrators often do not understand or have trouble accommodating an inclusive model and that parents step in and actively manage the inclusive placement. Thus, the process of inclusion extends beyond the parent's initial decision, and parents often remain involved at the school site. From the selection of teachers to inservice training for aides, parents participate in the work of inclusion. At the same time, however, they also shape the meaning of inclusion at the school site.

OBSERVATIONS AND IMPLICATIONS

Inclusive education can be thought of as both interactional work and public policy. As public policy, the inclusive education movement represents one piece of a larger effort to incorporate people with disabilities into social life. Inclusive education fits into parents' long-range plans for their children's later integration into adult roles within the community.

Describing the dilemma so many people with disabilities face, one parent shared her insights on inclusive education:.

One of the reasons I thought segregation (in school) didn't work was not just because the kids with special needs weren't ready to live in the community when they got out of school, but because the community wasn't ready to accept them when they got out.

As interactional work, inclusive education represents both a process of decision making and reality construction. To begin the process of inclusive education, parents wrestle with private understandings of their children's needs and abilities, and the educational philosophy and promise of an integrated school setting. When placement begins, parents confront a chasm between educational visionaries and the philosophy and resources of school staff. It is clear from this study that many districts lack the resources to appropriately support students in inclusive settings. Districts must attend to the needs of students with disabilities in these classrooms. Parents reported that their children needed trained paraprofessionals, support with curriculum modifications, access to special educators, and assistance with the overall coordination of educational services.

Furthermore, parents wanted to be partners in the process of defining inclusive education. Although some believe that inclusive education has been "pushed" on parents (e.g., Fuchs & Fuchs, 1994), our study found the opposite. Parents in this study specifically asked to have their sons and daughters with significant disabilities educated alongside peers without disabilities. Parents also told us that asking was not enough; they had to maintain the momentum for the placement to succeed. Besides allocating resources for individual students, districts must make a commitment to systems change. Traditional service delivery models can be challenged by putting research into practice. Philosophy alone is not sufficient. Parents want access to information, support
for their decisions, and provision of appropriate services.

Added material.

KATHLEEN GROVE, PhD, is a lecturer in the Department of Sociology at the University of San Diego. Her areas of specialization are medical sociology, social psychology, aging, and health policy. DOUGLAS FISHER, PhD, is a faculty member in the Department of Teacher Education at San Diego State University and the co-director of the National Consortium
on Inclusive Schooling Practices. His interests include educational policy, curricula, and school restructuring. Address: Douglas Fisher, SDSU Interwork Institute, 5850 Hardy Ave., #112, San Diego, CA 92182 (e-mail: dfisher@mail.sdsu.edu or kgrove@acusd.edu).

AUTHOR'S NOTES

1. Preparation of this article was supported through funding by Grant No. H086V40007 from the U.S. Department of Education. The content and opinions expressed herein do not necessarily reflect the position or policy of the U.S. Department of Education, and no official endorsement should be inferred.

2. To ensure confidentiality, the names have been changed.

3. An earlier version of this paper was presented at the American Sociological Association meetings in August, 1998.

REFERENCES

Bodgan, R., & Taylor, S. (1975). Introduction to qualitative research methods. New York: Wiley.

Bodgan, R., & Taylor, S. (1989). Relationships with severly disabled people: The social construction of humanness. Social Problems, 36, 135-148.

Brown, L., Long, E., Udvari-Solner, A., Davis, L., Vandeventer, P., Ahlgren, C., Johnson, F., Gruenwald, L., & Jorgensen, J. (1989). The home school: Why students with severe intellectual disabilites must attend the schools of their brothers, sisters, friends, and neighbors. The Journal of the Association for Persons with Severe Handicaps, 14, 1-7.

Erwin, E., & Soodak, L. (1995). I never knew I could stand up to the system: Families' perspectives on pursuing inclusive education. The Journal of the Association for Persons with Severe Handicaps, 20, 136-146.

Ferguson, P., Ferguson, D., & Taylor, S. (Eds.). (1992). Interpreting disability: A qualitative reader. New York: Teachers College.

Fuchs, D., & Fuchs, L. (1994). Inclusive schools movement and the radicalization of special education reform. Exceptional Children, 60, 294-309.

Galant, K., & Hanline, M. (1993). Parental attitudes toward mainstreaming young children with disabilities. Childhood Education, 69, 293-297.

Glaser, B., & Strauss, A. (1967). The discovery of grounded theroy: Strategies for qualitative research. Chicago: Aldine.

Goode, D.. (1984). Presentation practices of a family with a deaf-blind retarded daughter. Journal of Applied Family Studies, 33, 173-185.

Goode, D. (1994). A world without words: The social construction of children born deaf and blind. Philadelphia: Temple University.

Guralnick, M. (1994). Mothers' perceptions of the benefits and drawbacks of early childhood mainstreaming. Journal of Early Intervention, 18, 168-183.

Hanline, M., & Halvorsen, A. (1989). Parent perceptions of the integration transition process: Overcoming artificial barriers. Exceptional Children, 55, 487-492.

Harry, B. (1996). These families, those families: The impact of researcher identities on the research act. Exceptional Children, 62,
292-300.

Hunt, P., Staub, D., Alwell, M., & Goetz, L. (1994). Achievement by all students within the context of cooperative learning groups. The Journal of the Association for Persons with Severe Handicaps, 19, 290-301.

Kennedy, C., & Itkonen, T. (1994). Some effects of regular class participation on the social contacts and social networks of high school students with severe disabilities. The Journal of the Association for Persons with Severe Handicaps, 19, 1-10.

Kollock, P., & O'Brien, J. (1994). The production of reality: Essays and readings in social psychology. Thousand Oaks, CA: Pine Forge.

LeCompte, M. D., & Preissle, J. (1993). Ethnography and qualitative design in educational research (2nd ed.) San Diego, CA: Academic.

McDonnell, J. (1987). The integration of students with severe handicaps into regular public schools: An analysis of parents' perceptions of potential outcomes. Education and Training in Mental Retardation, 22,
98-111.

McDonnell, J., & Kiefer-O'Donnell, R. (1992). Educational reform and students with severe disabilities. Journal of Disability Policy
Studies, 3, 54-73.

Meyers, C. E., & Blacher, J. (1987). Parents' perceptions of schooling for severely handicapped children: Home and family variables. Exceptional Children, 53, 441-449.

National Association of State Boards of Education (NASBE). (1995). Winning ways: Creating inclusive schools, classrooms, and communities. Alexandria, VA: Author.

Neuman, W. L. (1997). Social research methods: Qualitative and quantitative approaches. Boston: Allyn & Bacon.

O'Neil, J. (1994-1995). Can inclusion work? A conversation with Jim Kauffman and Mara Sapon-Shevin. Educational Leadership, 52(4), 7-11.

Perry, A., Sarlo-McGarvey, N., & Factor, D. (1993). Stress and family functioning in parents of girls with Rett syndrome. In M. Nagler (Ed.), Perspectives on disability (2nd ed., pp. 203-212). Palo Alto, CA: Health Markets Research.

Rimland, B. (1993). Inclusive education: Right for some. Autism Research Review International, 7(1), 3.

Ryndak, D., Downing, J., Jacqueline, L., & Morrison, A. (1995). Parents' perceptions after inclusion of their children with moderate or severe disabilities. The Journal of the Association for Persons with Severe Handicaps, 20, 147-157.

Shanker, A. (1995). Full inclusion is neither free nor appropriate. Educational Leadership, 52(4), 18-21.

Stainback, W., & Stainback, S. (1984). A rationale for the merger of special and regular education. Exceptional Children, 51, 102-111.

Stainback, S., Stainback, W., & Forest, M. (Eds.). (1989). Educating all students in the mainstream of regular education. Baltimore: Brookes.

Staub, D., & Peck, C. (1994-1995). What are the outcomes for nondisabled students? Educational Leadership, 52(4), 36-40.

Traustadottir, R. (1993). Mothers who care: Gender, disability and family life. In M. Nagler (Ed.), Perspectives on disability (2nd ed., pp. 173-184). Palo Alto, CA: Health Markets Research.

U.S. Department of Education. (1996). To assure the free and appropriate public education of all children with disabilities Eighteenth annual report to Congress on the implementation of the Individuals with Disabilities Education Act. Washington, DC: Office of Special Education Programs.

Westling, D. (1996). What do parents of children with moderate and severe mental disabilities want? Education and Training in Mental Retardation, 31, 86-114.

Westling, D. (1997). What parents of young children with mental disabilities want: The views of one community. Focus on Autism and Other Developmental Disabilities, 12, 67-78, 94.

Zlolko, M. (1993). Counseling parents of children with disabilities: A review of the literature and implications for practice. In M. Nagler (Ed.), Perspectives on disability (2nd ed., pp. 185-193). Palo Alto, CA: Health Markets Research.

Zussman, R. (1992). Intensive care: Medical ethics and the medical profession. Chicago: University of Chicago Press.

Manuscript received April 22, 1998.

Initial acceptance May 27, 1998.

Final acceptance July 22, 1998.

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