Inclusive and Supportive Education Congress
International
Special Education Conference
Inclusion: Celebrating Diversity?
1st - 4th August 2005. Glasgow, Scotland
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Inclusive and Supportive Education Congress 1st - 4th August 2005. Glasgow, Scotland |
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Dr. Judy Lupart, Angela Irvine
University of Alberta, Edmonton, Alberta, Canada
judy.lupart@ualberta.ca
Dr. Vianne Timmons, Beverley Gerg
University of Prince Edward Island, Charlottetown, Prince Edward island, Canada
vtimmons@upei.ca
The inclusion movement is an international trend being explored in many countries (Mittler, 2000, Booth & Ainscow, 1998). In 1994, the United Nations Educational, Scientific and Cultural Organization (UNESCO) organized the Salamanca Conference where 94 countries participated in the development of the Salamanca Declaration and Framework for Action. This declaration states “inclusion and participation are essential to human dignity and to the enjoyment and exercise of human rights” (p. 17). In a similar vein Harkins (1998) states that, “Our world is made up primarily of relationships, not structures of programs” (p. 163). These relationships can mean the difference between social isolation and social integration, and in some cases, between living in the community or being institutionalized. Good relationships are also central to positive self-identity (Lyons, Coyne, Duck, Fitch, Gunter, Hood, Jackson, Miller, Ritvo, & Thompsen 1999). The current knowledge base on what this means in terms of day-to-day experience in the lives of individuals with developmental disabilities is severely limited.
The positive results of inclusive practice are beginning to emerge in the literature. Buysse et al. (1999) in a study which looked at 180 community based, licensed child care centers found that “inclusive early childhood programs were of higher global quality than non-inclusive programs” (p. 311) as assessed by caregiver responsiveness, appropriateness of learning activities, strategies for promoting peer acceptance and family participation. Similarly, Devore and Hanley-Maxwell (2000), found that children with disabilities can be successfully served in inclusive community based childcare settings. In addition, a number of authors have noted that inclusive practices for adolescents are important for the development of satisfying friendships and positive peer relationships, which in turn are critical for successful and satisfying school experiences (see for example Martin, 1996; Levesque, 1996).
Over the past twenty years, the inclusion of students with exceptional learning needs within the education system has been a dominant trend. A number of researchers have looked at educator’ attitudes towards inclusion of students with disabilities (Denti, 1999; Eckman, 1995; Engelbrecht, Oswald, Swart, & Eloff, 2003; Hastings & Oakford, 2003; Heiman, 2000; Janney, Snell, Beers, Raynes, 1995; Janzen, Wilgosh, & McDonald, 1995) and found that teachers reported greater peer acceptance of children with disabilities in inclusive settings (Bunch, Lupart, & Brown,1999; Wood, 1998). Research has also been conducted on parents’ perceptions of inclusive practice (Palmer et al., 1998; Collins, 1995; Guralnick, 1995; Guralnick, Connor, & Hammond, 1995; Kasari, Freeman, Bauminger, & Alkin, 1999; Lee, 1996; Palmer, Borthwick, Duffy, Widaman, & Best, 2000; Ryndak, Downing, Morrison, & Williams, 1996; Stahmer, Carter, Baker, & Miwa, 2003; Zanella, 1989). Results suggest a general acceptance of the concept of inclusive education; however, there are frequent reports that the necessary supports are not being made available. For example, Bunch et al. (1999) found that regular educators were assumed to have the primary responsibility for inclusive practice, however, few educators felt they were adequately prepared in terms of professional preparation, special educator support and expertise and resources.
When evaluating/determining the results of inclusive practice, it is as important to seek out the perspective of children and adults with disabilities as well as those of the service providers. This is necessary to ensure that program changes and practices are impacting positively on people’ lives. There has been little research carried out where people with disabilities talk about their experiences. A notable exception is Allan’s (1999) book Actively Seeking Inclusion for which she spent three-years interviewing 11 children with special needs about their views and experiences. She found, “The young people who took part in the research spoke with ease and fluency” (p. 2). They were able to articulate the impact of practice on their lives. Mahon et al. (1999) looked at social integration over the lifespan of people with mental handicaps. They conducted 18 focus groups (ages 12-60 and older), using semi-structured interview schedules. They found that they were able to identify key facilitators and constraints to social integration from a life span perspective. They also found that issues remained fairly constant across the lifespan. They stated: “social integration is recognized as one of the core dimensions that contribute to quality of life” (p. 83). They recommended that any future research be carried out in concert with people with disabilities.
In a study by Wehmeyer and Schartz (1998), it was suggested that self-determination contributed to a more positive quality of life for people with disabilities. Timmons and Brown (1997) found that there has been little research on the quality of life of children with disabilities from a personal perspective. Nevertheless, their stories can offer insights into programs and services. When Timmons (1993) spent time asking teenagers with disabilities about their life experiences they were able to clearly articulate the times when they felt part of a social network and times when they were isolated. It was the first time many of these children had ever been asked about their experiences and opinions. Goode (1999) states, “research about children with disabilities continues to be more informed by biomedical and behavioral approaches of disability than by the experiences of children themselves” (p. 121). He describes current research with children in this way:
Contemporary studies of children, particularly in educational, psychological, and sociological research, increasingly employ qualitative methods of research such as participant observation, ethnography and ethno methodology, these being particularly suited to capturing ‘subjective’ views of actors. Such studies have demonstrated that all children, even those with no formal language, have ways to communicate their views about life. (p. 123)
Unless we provide an opportunity to hear the voices of people with disabilities, we will not know the impact of policy and practices on self-determination and improved quality of life. Inclusive practices can provide such support. Brown (1999) states, “Listening to and valuing the views of people with disabilities, and treating them as unique but authentic people is a methodological practice that is probably quite helpful to enhancing self-worth” (p. 105). Timmons (1999a) suggests, “Research in the new millennium should focus on the development of strategies that assist people with disabilities to become full, contributing citizens in society” (p. 76).
Mittler (2000) states: “The most important challenge for the future is to enable children and young people to speak for themselves, even if they challenge the system and the views of their families and the professionals who work with them” (p. 188). We need to provide an opportunity to hear the voices of adults and children with disabilities, to value their opinions and views, and to learn from their experiences.
In summary, there has been considerable research conducted on inclusive practices over the last two decades. The research has focused on different age groups such as early childhood programs (Buysse, Wesley, Bryant, & Gardner 1999), school age children (Martin, 1996), young adults, and older citizens (Anderson, Lakin, Mangan, & Prouty, 1998). The research has looked at inclusion from teachers’, parents’, and administrators’ perspectives (Devore & Hanley-Maxwell, 2000; Palmer, Borthwick-Duffy, & Widaman, 1998; Riehl, 2000; & Wood, 1998). However, a major knowledge gap is evident in that the bulk of the research has concentrated on specific age levels and ‘other’ peoples’ perspectives rather than taking a life span approach and/or from the perspective of children and adult individuals with disabilities. The present research provides a forum for adults and children with disabilities to tell their stories, and to learn from each other, and for us to learn from them with respect to inclusive practice.
Research Questions
In an attempt to address the limitations and omissions of previous research our study utilizes a life span approach to inclusion from the perspective of children and adults with developmental delays. Specifically, the research questions for this study were:
In this three year qualitative study, data will be gathered from semi-structured interviews, field based observations and document analysis. Pugach (2001) states that these three methods of data collection provide “multiple data sources for the telling of disciplined stories… disciplined stories are products of systematic planning and careful hours and months and years in the field… which is often the grist for profound insights about individuals or situations at hand (p. 440)”. We are currently carrying out Phase Two of the ongoing study. In the present paper, results from the Phase One semi-structured interviews with the initial target participants and parent/guardians are reported.
Participants
Approximately sixty children and adults identified as having moderate developmental delays were selected for participation in this research (see Table 1). From the volunteers interested in our project, purposive sampling was undertaken to ensure balanced gender representation. They are organized into six age groups, five participants in each age group, young children (3-6), elementary aged children (7-12), adolescents (13-17), young adults (18-30), adults (31-50) and older adults (50 and older). A mail-out requesting volunteers was sent to all families registered with local agencies, advocacy groups, school systems, sheltered workshops and group homes. Interviews were also conducted with the parents/guardians or significant family members of all participants to validate the information gathered in the participant interviews.
Table 1
Breakdown of Participants: Alberta & Prince Edward Island
Number of Participants In Alberta |
Number of Participants In Prince Edward Island |
||||||||
Age Group |
Urban |
Rural |
Urban |
Rural |
|||||
Young Child |
4 |
1 |
4 |
1 |
|||||
Elementary Age |
4 |
3 |
3 |
2 |
|||||
Adolescent |
4 |
1 |
2 |
1 |
|||||
Young Adult |
4 |
3 |
3 |
3 |
|||||
Adult |
4 |
1 |
2 |
3 |
|||||
Older Adult |
6 |
0 |
2 |
2 |
|||||
Data Collection
For the overall study, data will be collected from three sources: participant interviews, participant observations and a review of policy documents. Each participant will be interviewed three times over three-years. The interviews will be scheduled in the fall, winter and summer in order to derive an overview of school, leisure and home life throughout the year and to access changes over the three-year period. Interviews focus on how the participants perceive their involvement in, feelings about, and reflections on everyday activities such as recreation, education and/or employment. In addition, the research team will develop a picture of participants’ lives through focused field observations in home, work/educational and leisure settings and through interviews of associated caregivers. In addition, observations will provide information on the amount of time spent included in activities with other children and adults of the same age group and on the quality of these experiences. Finally, document analysis will be conducted on current policies set up in the provinces to support people with disabilities. The present paper provides an analysis and discussion of the initial interviews with target participants and their parent/guardians.
Analysis and Interpretation
A descriptive analysis of the data obtained from the participant interviews was undertaken to address the research objectives. A further analysis was carried out to identify trends over the six age groups and to provide a life span look at inclusion based on the participants’ experiences. The NUD*IST software program was used to code the transcripts and identify trends and patterns from the interviews and observations as a part of the qualitative data analysis. All coding was completed in a collaborative effort by the research team members from both provinces to ensure consistency of the coding structure..
Family Relationships
Barriers to Family Activities
During the first participant interviews, the topic of family contact was often discussed. Unfortunately, many of the adults in our study were not able to visit their family on a regular basis. Despite having a desire to spend time with family members, certain barriers prevented this social activity. Many of the participants indicated that they were having or had a history of limited access to family activities because of lack of finances. For example:
I (interviewer): Okay, so you don’t ever go out with [your family] or visit with them?
P (participant): No, I can’t afford it.
Certain contact issues were also found to impede with the quality of family activities. This was sometimes due to the hectic schedules of their families, no immediate family members remaining (death of family members) or family tensions that discouraged target participants from getting together with family members to partake in family activities. For example:
P: No, [my family’s] busy you know, busy, busy, busy all the time. I’m not contact with them.
I: No contact?
P: No.
The following response from an adult target participant illustrates how tension in the family would interfere with family activities.
P: Dad, he would come home one day, drunk as all get out. He drinks just like anybody, and he’d go out yonder somewhere and drink and come back at midnight. And one day I was in the TV room watching TV—just like I do here, and Dad came storming home one day. . . . I figured Mom would come down with a nervous breakdown one of these days. So I didn’t . . . I went home for Christmas just once.
Family Support
When participants were asked about the kinds of supports that were typically provided by their families, a common response was that they often received financial and/or material support. As examples:
“Okay, . . . how do they support me? . . . If we need any type of money sort of thing, they don’t mind paying it for us, and in the future we can pay them back afterwards.”
“Yeah, they buy my clothes for me, and like, when I need stuff, they come over here and make a list. Like, I just bought $400 worth of clothes on Thursday because I needed new pants. My pants were falling apart, so I bought four new pairs of pants, shirts, socks, underwear, and other stuff.”
When asked about other kinds of support their families provided, many participants reported that they received emotional support and often would be given advice. As examples:
I: Your brother, how does he support you or does he support you?
P: Yeah, he listens to me, he helps me with games if I’m stuck on them, he calls me just to see how I’m doing.
I: You like them. Do they help you sometimes? What do they do to help you?
P: Calm me down.
Education (Children and Adolescents)
What They Like About School
Participants were asked a number of questions concerning their school experience. One of these questions focused on what they like about school. It is of interest to note that the responses of younger and older participants were for the most part very similar. A high proportion of participants indicated that they enjoyed their classes (more often reported by participants in younger grades), and extracurricular activities in school. For example:
I: What do you like about school?
P: I like learning.
In the latter category concerning extracurricular activities, the most often mentioned activities included choir, intramurals, and field trips. Another aspect of their educational experience that was positively viewed was the social interaction opportunities, as exemplified in the following:
I: Is there anything else you enjoy about school?
P: Kind teachers, kind friends, . . . playing basketball at school.
• Recess
Sister: What do you do outside?
P: Play—recess.
I: Oh, you like playing at recess?
P: Yes.
All participants were asked to talk about the things that they don’t like about school. A variety of comments were offered in response to this question. Many of our participants described difficulties they encountered at school and some frustrating moments. For example:
I: What do you find challenging about school?
P: Sometimes trying to keep up with the work.
I: Is there anything else you find challenging about school?
P: Trying to understand the teachers.
I: Oh really, what do you mean?
P: They put it into hard terms that I can’t understand.
I: Is there anything else you that gave you difficulties in school this year?
P: Some kids picking on me.
I: That’s too bad. And what did you do about that? Did you do anything?
P: I got really angry and fought back and got in trouble by the principal, and I stopped doing that.
I: And how did the other kids react when you fought back?
P: All they did is just laugh.
Education (Adults)
I: What do you like about school?
P: It just gives me more skills and more learning, and now I’m taking Speech Therapy at the [hospital]—every Tuesday for one hour.
I: What do you like about school?
P: Friends! Learning. Getting to know people and them knowing me.
I: What do you find challenging in school?
P: Concentrating because of my [disability]. It is also very hard to deal with all the noises, smells, lights, touching (bumping into people in the halls, etc.) that happen in school. Coping with all of this stuff and trying to do school work takes a lot of energy, and I get tired very fast.
Difficulty communicating (i.e. some individuals have a difficult time articulating their thoughts or are not understood by others in their class because of some type of speech impairment)
Kinds of Work
When asked about work, only 3 out the 18 participants in the adult sample indicated that they had secured paid employment. Examples of the types of employment adult participants were engaged in included:
Volunteer Placements
Five of the adult participants indicated they take part in volunteer work. Examples of volunteer placements that were cited included:
I: What do you like about your work?
P: Well, it’s pretty fun there. People are nice. I get to see most of the old teachers from different schools.
I: What do you enjoy about your work? So when you volunteer in the building or when you work at [an agency], what do you like about that?
P: Meeting people and having fun.
Challenges at work
All employed or previously employed adult participants were asked about what they found to be challenging at work. A common response was that some of the tasks they were asked to carry out were perceived to be too difficult. One participant explained it as follows:
P: When we started out way, way back, the second year, I hated doing assorted cutlery.
We did like forks, knives, and spoons, and that’s assorted, and that’s a mess! You had to make sure you have eight of each. It was confusing.
Another problem expressed by working participants was having to negotiate difficult interpersonal relationships. For example the following participant described her difficulty in being assertive.
P: I just have to be . . . I have to talk things out with somebody, and I’m kind of scared, and I hate to hurt somebody’s feelings. And if a person doesn’t do their job, I hate saying, “You can clean this; this is a job for cleaning” kind of thing.
The researchers were interested in learning about the types of group activities participants were involved in and a wide variety of replies to the question was noted. For example respondents mentioned:
Emergent Parent/Guardian Themes
The researchers were interested in how parents and or guardians described the individual characteristics of their son or daughter. Specifically, we asked the question “Tell me about your child.” It is of interest to note that we received quite different responses depending on the age of the target participant.
It was most common for parents of school-aged children to focus on their child’s strengths, as expressed in the example below:
“Well, he is strong-willed, which is good for him, to a point. He has an
incredible sense of humor; he’s funny. He’s a very personable person:
He loves people in spite of his [disability].”
“Now [my daughter], she’s a fun, easygoing, lovable kid, and she’s a
real people pleaser, so she does really quite well in school. If she’s
given a task, she will run with it. She will try to take the challenge
on. I’m not sure whether that’s an elementary type of skill, because
[my son] used to have that one.”
In sharp contrast the parents of adult participants would most often focus their comments on the disability of their son or daughter, as seen in the following examples:
“Her disability—it’s a mental disability. When she was born, she was fine.
I think that’s where it happened to her, when she had her tonsil surgery.”
I: Can you just start off by telling me about [your son]—maybe a little bit about his personality and a little bit about his disability?
P: Well, what happened to him, or what?
When talking about their children, parents and guardians also tended to refer to their child as “like any other”. They strive to have their children live as “normal” a life aas possible”. A sense of normalcy was felt through the use of such phrases as “so do other kids” or “we are just a normal family”. Parents seemed to want to convey that they treated their child as they would any other member of the family. This was demonstrated in such excerpts as:
“But see, he has something that you wouldn’t really say that by looking at him, you can’t see he’s really handicapped, but it’s in his brain, something that—“
“But he has the same rules as the other kids do too.So I think that’s part of it too. It’s like, we don’t really have any behavior issues or anything like that at school.”
When we talked to parents/guardians about their child’s peer group and friendships, sharp differences were again noted in the responses of parents of school-aged children and parents of adult participants. Parents of school-aged children seem to prefer their children to be friends with children without disabilities, as indicated in the following:
P: We’re trying to get her to see the joy of friendships with kids her own age.
P: But so many who don’t want their disabled children/adults integrated with other peers [with disabilities], it seems to me that they haven’t really allowed their children to be who they are, you know.
When parents of young children were questioned further they reported that their children are well accepted and have lots of friends. This perception is evident in the following excerpts:
“He’s really welcomed into the class, that was my deciding factor whether to put him in Gr. 1 or to keep him in kindergarten but because this group of kids accepted him so well I decided that that was probably more beneficial.”
“And we do have a good network of kids—friends—that have totally accepted him for what he is—and haven’t tried to ostracize him at all for his disability at all. Everybody’s accepted him.”
When parents of the older age groups were questioned further about their son or daughter’s friends there was frequent mention of social problems (e.g., bullying, social isolation), that were widely reported to have begun to appear in the older age groups (especially adolescence). One parent describes it in this way
“His friends are more transient. . . . They’re more acquaintances than friends. . . .
They get tired of him. He says the same thing, and a lot of things that they may be interested in, I don’t want him to participate in. . . . Those friends will do stuff with him, but there’s a cutting point.”
Another example of the social difficulties faced in apparent in this excerpt:
“because she’s such a good-spirited kid, if she has money, the kids will, “Let’s go to the store. Can you buy me this?” They might not have that, but [she’s[ more than willing, and before you know it, her twenty bucks is gone. That’s just the kind of kid she is. And then she kind of feels, “Well, Mom, they don’t ever come around me unless I have money” or “They don’t want anything to do with me unless—I have to give them something.” I said, “Well, then, they’re not your friends.” But she feels that she needs to do that, and they kind of sometimes take advantage of her that way.
Transitions
Many of the parents of teenage participants described the adolescent years as particularly challenging. Many talked about the deep feelings of frustration that sets in when their son or daughter longs to do what other teenagers are doing (i.e., driving, going out alone, etc.). One parent expressed her concerns as follows:
“He absolutely wants to be like his peers and will be upset when he can’t do things that maybe his peers are doing, and that’s where we see some of the, well, some of the—what’s the word?—he balks or shuts down. Or, you know, if he sees kids going for driver’s ed., he thinks he should be in driver’s ed. too. And I think those are the challenging parts.”
One of the often-mentioned concerns of parents was the reality of their own aging and a deep concern about the care of their son or daughter after they were no longer able. This was expressed in the following way by one parent:
P: What are we going to do with [her] if something happens to us?
Such concerns typically centered on basic issues such as affordable and comfortable housing, or the limitations of financial support through the Assured Income for the Severely Handicapped (AISH). Funding support was generally considered to be insufficient and concerns were expressed about the perception that funding that is available but wasn’t being distributed appropriately (i.e., individuals lose money if they are paid too much at work which takes away motivation to work). Another area of concern was the failing health of their son or daughter and associated care and costs issues. One parent expressed concern as her daughters health was beginning to deteriorate as she aged:
“I wish I wouldn’t have taken her for that [tonsil] surgery, and then she wouldn’t have to live the way she is now.”
Phase one of our Inclusion Across the Lifespan project has provided considerable insight into the inclusive experiences persons with developmental disabilities are experiencing in school, work, and leisure settings. It appears that while many positive experiences have been reported, many challenges to inclusion were also evident. The social lives of the individuals in our study was the main focus during the initial interviews and this is an area of great concern for both the individuals themselves and their parents/guardians. Even when work and school are the topic of discussion, interactions and social aspects tend to dominate every response. Phase two and three of this study will continue to explore the issues discussed in the initial interviews and will further discuss the stories of inclusion of each participant. Our next participant interviews will strive to capture their inclusion stories the way they have experienced it and in their own voice.
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Zanella Albright, K.A. (1988). The attitudes of special education professionals and parents/guardians toward integrating students with mild, moderate, and severe/profound mental retardation into regular education buildings, neighborhood schools, recesses, lunches, assemblies, nonacademic classes, and academic classes. Dissertation Abstracts International, 49 (2-A).
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