A cross-cultural study of inclusive education and its impact on families and students with disabilities

1. A cross-cultural study of inclusive education and its impact on families and students with disabilities Elizabeth Kozleski, National Institute for Urban School Improvement Robyn Hess, University of Northern Colorado Petra Engelbrecht, Marietjie Oswald, Estelle Swart, University of Stellenbosch Irma Eloff, University of Pretoria

2. Overview • Introduction • The Studies: Listening to Family Voices (40 Minutes) • What we learned (20 minutes) • Inclusive Education • Complexities of Power & Privilege • Discussion & Future Directions

3. Introduction • Inclusive Education – the big picture • Salamanca Statement 1993 • Education for All – UNESCO

4. UN Commission on Human Rights • Over 600 million people, or approximately 10 per cent of the world’s population, have a disability of one form or another. While their living conditions vary, they are united in one common experience – being exposed to various forms of discrimination and social exclusion.  

5. Salamanca Framework for Action • The fundamental principle of the inclusive school is that all children should learn together, where ever possible, regardless of any difficulties or differences they may have. Inclusive schools must recognize and respond to the diverse needs of their students, accommodating styles and rates of learning and ensuring quality education to all through appropriate curricula, organizational arrangements, teaching strategies, resource use and partnerships with communities. There should be a continuum of support and services to match the continuum of special needs encountered in every school. (Salamanca Framework for Action, Article 7)

6. EFA & the Right to education: Towards Inclusion • The right to education is universal and must extend to all children, youth, and adults with disabilities. This right is enshrined in the Convention on the Rights of the Child (1989) and addressed in several significant, internationally approved declarations, including the World Declaration for Education for All (1990), the Standard Rules on the Equalization of Opportunities for Persons with Disability (1993), the UNESCO Salamanca Statement and Framework for Action (1994), and the Dakar Framework for Action (2000).

7. The South African & US Contexts • South Africa • Constitution • SA White Paper 6 2001 – special needs and inclusive education • US IDEIA – LRE • Tensions about LRE • U.S. Disproportionality/SA Accessibility/Mainstream dumping • SA Outcomes based education – US NCLB • Reforms compete with each other • SA Parent Role in shaping inclusive education – Parent leadership in Disability rights • 11 official languages in SA – Multiple Languages in US • Impact of HIV/AIDS -

8. Context: Schools • Discrepancy between well resourced and poorly resourced schools • Materials • Facilities • Safety • Professional and community involvement • Leadership • Teacher Quality

9. Context: Classrooms • Class Size • Teacher • Preparation • Fluency • Pedagogy: discrepancy between theory, evidence-based & practice • Salaries • Teachers receive innovation rather than create it • Pedagogy: Tensions between constructivism and behaviorism… • Teacher-centered to Learner-centered (what about learning?) • Teachers are dying • Disillusionment with the system

10. Context: Children/Students • Poverty • 10 miles walking to schools • Uniforms • Hunger and a system for feeding children • School Fees • Children as heads of household • Learners not children…. • Who are they?

11. Assets • Communication • Open dialogue • Pragmatic understanding of the relationship between policy and practice • Understanding that Inclusiveness is multidimensional concept– not only a disability issue • Inclusiveness is a process (Booth) • Removal of barriers • Establishing equity • Cross-cultural perspectives

12. Approach • Interviews and focus groups: Whom did we interview? • Language issues: Mother tongue or English? • Data analysis: Content or discourse analysis? • Questions: The relationship between the questions we ask and the "answers" we get • Acceptance of a multiplicity of views • Extended deadlines • Richer data and in-depth data analysis • Internal Validity • Ongoing conversations with each other..

13. Focus Groups - USA • Conducted 13 focus groups at the school where the child attended with 1-5 participants in each group • Semi-structured, open-ended questions and probes to encourage relaxed conversation between families • Duration – 1 to 1 ½ hours • Groups were tape-recorded and later transcribed • 3 groups were conducted in Spanish, the rest in English

14. SA Interviews • 47 Participants – across 2 provinces and 4 school systems • Tape recorded • 1 ½ hour interviews – 8 focus groups and 5 interviews • Semi-structured focus groups were used – with a central question to focus the interview: Tell us about your experiences as parents of your child’s inclusion in a mainstream classroom and school. • Secondary data were obtained from field notes and documents.

15. Making Meaning like Growing Crystals A crystal "combines symmetry and substance with an infinite variety of shapes, substances, transmutations, multidimentionalities, and angles of approach. Crystals grow, change and alter, but are not amorphous" (Richardson, 2000: 934).

16. Questions • USA: What are parents’ perspectives on special education decision making and program planning • What is the families’ role in the special education process? • SA: Listening to and attempting to describe parents’ experiences of inclusive education.

17. Visible and Invisible Disabilities • SA: Cerebral palsy, Specific learning disability, Physical disability, Down syndrome, Hearing impairment, Visual impairments, Spina bifida, motor problems after removal of astrosytoma, Goldenhaar Syndrome and Quadriplegia, Acquired brain injury, Duchenne’s Muscular Dystrophy and Trisomy 14 (MOSAIC). • USA: Learning disabilities, Intellectual Disabilities, Down Syndrome, Hearing Impairment, Pervasive DD, Emotional Disabilities, Speech Language

18. Understanding the data • Constant comparative method – process of reading each transcript to see whether similar ideas are repeated, or new ones introduced • Categories or themes emerge • Refining the categories • Comparing these themes to the literature

19. Dimensions of Inclusive Education • Collaborative Partnerships • Advocacy and Leadership • Professionalism • Emotions as Power • Class, Language & Race • Values for Inclusive Education

20. Collaborative Partnerships • Among practitioners, between practitioners & families, parents and their children • Mutual Respect • Ethic of collaboration • Intragroup • Intrapersonal • Intraorganizational • Coherent Intent • Trust, Cultural Sensitivity, Respect for Skills, Equality

21. Collaborative Partnerships: SA • “Because I do not think it is going to be successful if the parent is not involved. And, you can only be involved if you make a commitment. So, yes, I would say that commitment is the most important thing. You cannot think okay, the school is simply going to do it and leave the child to it. That is not going to work.”

22. Struggling to Partner: US Family “Yo a veces le digo a mi niño que si le ayudo y el me dice: no usted no sabe y como él puro ingles escribe en el papel me dice no, usted no sabe y él se pone solito.” Sometimes I tell my son that I will help him with his homework: he says “no, you don’t know how”...and since he writes only in English, he tells me “no” and goes off by himself to work. (translated from Spanish)

23. Struggling to Partner • “I’m having a hard time knowing if he is reading or not because he reads in English, and I don’t know English. I ask his brother to check on him to see if he is really reading correctly or not.” • “I sit with my daughter when she tries to read – she doesn’t read very well, but I don’t read at all. I want her to try so I sit with her.” • “When D. has difficult homework that she doesn’t know how to do, she tells me – then I tell my husband to take me to see our cousins in Oiltown (who speak English) so that they can help her – but he always comes home from work very tired and says that it is too far to travel.” (translated from Spanish)

24. Struggling to Partner: US “No tenía ayuda suficiente y se me hacía que no le estaban poniendo la atención que necesitaba, entonces yo y mi esposo vimos que no aprendía nada. Nos decía la maestra que estaba bien y que si aprendía, pero no era lo que yo realmente quería oír...hablé con ella pero este..... nunca me dio respuestas, las que yo quería oír.....que nunca le ponía atención salvo cuando le pedía ayuda.” She wasn’t learning in 1st grade and even though I talked to the teacher about my concerns she said that everything was fine; she never gave me the answers I was looking for. She didn’t pay María any attention unless sheasked for help.” (translated and paraphrased from Spanish)

25. “Let me know what’s going on” “Give me some things…bring some things home. Let me know what’s going on at school. I would like to even have a lesson plan of what they’re gonna do this week. Or, what are the goals for this month? What the teacher is hoping to achieve for the month as far as learning with the kids.”

26. Advocacy as Leadership • Who has the power – who takes the power? • Parents as Activists • Negotiated Services…. • Resiliency • Teachers as co-agitators • Parents of other students volunteering to pull the children who had disabilities through…. • Unselfish commitment to teach and support other families about the system

27. Advocacy as Leadership • Is inclusion a right or a privilege? • Parents who thought it was a privilege – over accommodated • Parents who thought it was a right – wanted “equal job sharing” • Parents accommodate the system • Understand the need for developing a legacy for inclusiveness • Parents who were wiling to “walk the extra mile” • Parents who worked with system’s assumption that something is wrong with the child

28. Advocacy: SA • “At the end of the day, it’s only you fighting for the child’s life and it is the parent who will open that gate and let the child through. So, I think it is essential that there is some form of association where parents can actually go because it is a lonely experience.”

29. Identification & Placement: US Parent • “Porque cuando estaba en segundo año lo lleve aquí por....., me mandaron de aquí de la escuela para que lo le hicieran unas pruebas no se de qué, lo llevé.” ¿No sabes que pruebas le aplicaron? “—No” ¿No te explicaron los resultados de los exámenes? “No, nada mas lo llevé lo llevé ahí me despacharon de aquí para allá.” • The school sent me somewhere to have some assessments done with my son, but I don’t know what kind of assessments or what they were for. I took him, but I didn’t know why, and I never heard anything about the results.” (translated and paraphrased from Spanish)

30. Advocacy: US Parent “It was really difficult for me to sit through IEP meetings and different people would start talking speech jibberish, different people would say things, and I would sit there and I would really try to focus on what’s going on. But I would take that paper home, and I’d look at it and I’d be thinking what in the world just transpired. It took me pretty, several years, before I realized, I am his advocate. I have to speak up and say okay wait a minute, slow down, what does that mean, what did you say?”

31. Professionalism • Double edged sword • Not all professionals are equal • The roles of various professionals • Principals, teachers, school psychologists • Positive face on making changes with lack of follow-through

32. “Make believe positive?” • “If she’s make believe positive, if she’s like that, then you don’t know how to react to that as a parent.”

33. Professionalism: SA • “If you cannot include everybody, you are not welcome at my school…” • "Mrs. Brown, even if your child must come with a 'nappy' or 'kimby', you bring her. She belongs here" (I.5, 153 – 155; FG.1, 75 - 76). • “The first day of school the Grade 1 teacher said to me I mustn’t worry because she’s got all the stuff on the internet and her husband bought her some books on inclusive education, so she was very well prepared” (FG.2, 887 – 891).

34. “ Be Prepared to Learn” • Parents were of the opinion that teachers do not need to know everything from the start, ”But you need to be prepared to learn.” • “I haven’t a clue what to do but I’m willing to learn and walk the extra mile with the child.”

35. Emotions • Cycles of emotions that are churned up throughout the process of advocacy…. • Frustration • Uncertainty • Lack of expertise (knowing what to do) • Anxiety about gambling with the future of the child – no clear information about what the right thing to do is… • Insecurity – once access is gained it could be denied at any point – because of a change in personnel, the system, a critical incident • Emotions as power – they tend to move systems or people to offer compromise, negotiate…

36. Building Resiliency: USA “I learned it wasn’t me…it’s just part of life. So to me…I worry about my son constantly. I worry. I worry. I worry because I know my son. I worry about him when he’s here, what he’s doing. But I have to umm…get over that because I can’t shield him from everything. I can’t protect him from everything regardless of what is going on he still has to like, I said, go out there in society and I have to let him do it. I have to let him get out there and do it and it scares me because I know what he’s going through but at the same time I feel, umm…that it’s something he needs.”

37. Building Resiliency: SA • “He has to feel the pressure and he has to deal with it …” (FG.2, 394 – 395 • “Every year has become more of a challenge having Chris in mainstream inclusive education and especially this year the standard set is very high, the pressure is high, the volume of work is high. We try to keep him doing as much as what the other kids do, but find that there’s a lot of things that he just can’t cope with” (FG.2, 82 - 88). • She is friendly with everybody and everybody is friendly with her. You understand - friendly. But to have an intimate friend, build an intimate friendship is very difficult for her (I.1, 579 – 581) … they come once… even at school I can see a distance (I.1, 887 – 888) … She is just missing that intimate friend (I.1, 1167).

38. Building Resiliency: SA • “Don’t give up; do not let anyone tell you what is best for your child. Stand up and help where you can, but do not suppress your child. I have unfortunately learned the hard way.” • “And then this one says, ag yuck, not with Abbey, you do not want to lend Abbey's stuff, you do not want to talk to her… and then the children laugh… and that upsets Abbey dreadfully…” (I.1, 592 – 610; also I.2, 157).

39. Building Resiliency: SA • The peer groups of these children were largely supportive, in one case a parent stating that "the children help her a lot" (I.2, 562). • “They do say things and you feel like you want to cry and you, you don’t know what to do, you’re so helpless, but that’s always going to be there …” (FG.2, 1301 – 1303). • Most did not experience resistance from other parents who “were very much at ease with the situation" (I.2, 535 – 536; I.3, 480 - 481). • "you're part of the school community, but actually you're still on your own" (I.2, 6 – 7).

40. Fear of the Future: US Parent “And I don’t know what will happen when we move on to (name of middle school), going to have to think about that. Kind of just do one year at a time. It’s too hard to think about the future.”

41. Emotions: US Parent “Umm…to me this has all been overwhelming from the first day I found out that my son needed special attention. At first it broke my heart because I thought it was me. I was like, well, what didn’t I do? What didn’t I do as his mother and his provider?”

42. Values • Teacher Attitudes • Doing the right thing – see the child and family as an opportunity to learn new skills… • Seeing the work to include as a challenge or a burden • Fear – lack of skill • Parents experienced teachers may not think that inclusive education is such a hot idea …. As well as teachers who embraced the concept and were willing to work on the practice

43. Inclusive Education: SA Parent “ … Being so included and speaking so well and does everything his peer, do, the disabled schools and special schools would just not work because they just would not stimulate him enough intellectually for what he could do. ”

44. Inclusive Education: SA Parent “They need to get used to the idea of having children with disabilities in all schools because in the past these children were put away – nobody knows that they were there.”

45. Inclusive Education: SA • "Because, I cannot hide my child away, she must learn…it does not help if we keep her locked up for eighteen years and then all of a sudden I say to her, there's the world, now you must find a place for yourself (I.2, 167 – 170 own italicization).

46. Value of Inclusive Education • “He must be a pupil of this school and he must work hard. And if there’s rules that he must obey them like all the other kids, he must also do that. Don’t let him be there for the sake of him being there … there is your chair, sit down and keep quiet …” (FG.2, 501 – 506). • "We did the right thing, because the world must see them" (I.2, 526). • “And that’s actually where we need to start, is at the … in our environment, our neighbors, our community, our church … And why shouldn’t they be included? They’ve got a right, just as … Just like … yes. But it’s the past. We sit with the burden of the past that people put their kidin an institution and nowadays we don’t do that anymore”(FG.2, 812–817; see FG.1, 591-592).

47. Class, Language, & Race • The role of social construction of class, language, disability & race is more widely recognized in SA than it was 10 years. • In the States, the social construction of class, language & race plays out when children and families receive services for special education. • Informed consent • Placement • Communication

48. Dimensions of Inclusive Education • Collaborative Partnerships • Advocacy and Leadership • Professionalism • Emotions as Power • Class, Language & Race • Values for Inclusive Education

49. Discussion • What did we learn? • What does it mean? • What don’t we know? • What are the limitations of this study? • Next Questions

50. Emerging Comparisons SA & USA • Are the results compatible? • Progress has different meanings because of contexts… • The starting points are very different • The words are the same but the scale is very different • Geographically, population, demographics,… • The themes are similar – the contexts differ • The national agenda in SA may be more ambitious than in the US • No shared, official definition of inclusive education in the US • Family (US) vs. Parent (SA) definitions – seem similar