Until Somebody Hears Me: Parental Voice and Advocacy in Special Education Decision-Making

1. Until Somebody Hears Me: Parental Voice and Advocacy in Special Education Decision-Making Robyn S. Hess University of Northern Colorado Elizabeth Kozleski National Institute for Urban School Improvement

2. Overview • Tensions in Special Education • Parent Roles and Decision-Making • School Systems • Teachers • Study Design and Context • Overarching Themes • Advocacy vs Being “Othered” • Finding the Right Fit • Relationships vs Expertism • Conclusions

3. Macrosystemic Context of Special Education • Special Education Advocates – • Meet the needs of children with disabilities • Protect children with special needs • Provide for the education of all children • Special Education Detractors – • Creates barriers • Encourages stereotypes and negative labels • Institutionalizes a two-tiered system in which one track is inferior • Children of color are overrepresented

4. Roles of Parents in Special Education • Role has changed, but negative perceptions still exist • Lack of equality – consent giver vs. decision-maker • Especially with culturally and linguistically diverse families • Parents do not report feeling respected or understood • Cultural misunderstandings

5. Decision-making and Partnership • Parents are faced with several critical educational decisions related to their child • Should I have my child tested? • Should I allow my child to be identified as Educationally Handicapped? • What type of program will work best? • How much will my child be in the regular curriculum? • Is this the best school for my child?

6. The Role of Teachers in Special Education • Partner and Liaison Role • Focus on Relationships and Collaboration • Frequent informal communication • Expert Role • Focus on application of knowledge and research • Infrequent, formal communication via paperwork

7. Purpose of this Study • Parents’ perspectives on special education decision making and program planning • What is the families’ role in the special education process? • We wanted to hear the voices of those parents who have typically been less vocal • Use these results as a starting place to better understand how professionals can support families

8. Focus Groups • 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

9. Survey Questions • Tell us about your children’s school experiences – their classes and their classmates. • Tell us about how you first learned that your child might need special help. • Tell us about what’s happening now with your child. Is he or she continuing to get special help and how is it working out? • How does your child fit in with his or her classmates?

10. Survey Questions • To what extent has school been good for your child? • We explained the concept of inclusion and then asked - In what ways has your child had an inclusive school experience? • What would the perfect school be like for your child?

11. Participants • Identification and recruitment – School Psychologists - 8 schools in an urban school district • 17 Latino (8 Spanish-speakers), 10 African-American, 2 Anglo participants • Participants were recruited based on willingness to share their perceptions and opinions of their experiences with the special education system.

12. 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 • Data grouped by stakeholders (Families, Schools, Teachers)

13. Parents

14. Schools

15. Teachers

16. Advocacy vs. Being Othered • “Othering” – making distinctions between individuals so that some are viewed as mainstream and others as different Three features of this theme • Power and Privilege • Standardization vs. Personalization • Parents Changing Self-Assessments

17. Power and Privilege • Parents had varying degrees of knowledge related to their child being identified as qualifying for special education • Some of this variability seemed to be related to whether a parent had knowledge of the system (e.g., paraprofessional, other children in special education)

18. “I just felt like I had to go with it”. • “And then they called me, they’re like we need a meeting, we need to do this, we need to do that. And I sat there and I’m like okay, what’s wrong? Well, this is wrong, and this is wrong, and he doesn’t do this…and I was like well, why wasn’t I called before? Why wasn’t I informed before? Why didn’t anybody tell me? Show up, like, if he’s showing red flags up here, why didn’t I get this? I just felt like I learned…I came in at the end and I was told at the end. So it was like I was…this is how it is going to be and this is what we’re doing. And I just felt like I had to go with it”.

19. Standardization vs. Personalization • Schools attempt to streamline the IEP meeting • Parents feel overwhelmed by this experience • Language is alienating • Parents don’t understand and are confused by the process

20. “I had nobody there with me”. • “My first experience with an IEP, I felt like I was in a different world. I just sat there crying because it felt like, they made me feel like my son was like, so low on his scores and then it’s like I had nobody there with me, and I am just looking around at everybody and I’m “he what”? They just kind of rushed through it, and all, basically all I got out of it was that it was, “my son’s not up to his potential”. He’s not doing this and he needs this service, and that’s it, sign the papers. And I just walked out of there. I mean, I was just flabbergasted.”

21. Parents Changing Self-Assessments • Parents find themselves experiencing new attitudes and feelings toward their children (e.g., more patience, understanding) • Parents adapt their schedules or practices to try to help their children • Parents begin to see themselves as advocates for their children

22. “…until somebody hears me”. • “So I was there the day they hired a teacher. I talked to her and said, ‘These are my concerns. I know you are a mild/moderate (teacher) and I know this is a new program, pilot program, but I will be here. And you will see me frequently, you may be coming to the point where you hate to see me. But if you need something, let me know. I will go to bat to get what you need. If it’s computers for your room, if you need Para help, whatever you need, I will be there helping. I will stand up on the table and scream until somebody hears me”.

23. Schools: Finding the Right Fit • Despite the struggles around “getting in” to special education, families see the services to be of great value to their child • The Value of Inclusive Services • Finding Responsive Schools • Dealing with Systemic Barriers

24. Values Placed on Services • Families generally believed services were effective and could relate very specific examples of their children’s growth • Parents generally wanted their children to be educated in inclusive settings (either full inclusion or small amount of pull out) • Additional program options (e.g., after school tutoring) help fill in the gaps

25. “…you just automatically thought they were better”. • “I don’t think it’s good to umm…segregate kids just because one person is smarter than the other. It jus seems to put, to start labeling them when they’re just that young and they pick up on that. Like when I was in school, you know, they had the gifted and talented and you’d see all the kids going to the gifted and talented, and you just automatically thought they were better”.

26. Finding Responsive Schools • Schools with a warm, inviting atmosphere • The amount of communication, partnership and perceived caring • Minimal conflict

27. “No one feels left out” • “Mi niño tiene problemas verdad? Pero él cada mes se saca un diploma porque es el primero que llega y participa en la clase,  y entrega todos los trabajos, no hay de que tenga problema para estudiar o de hablar, no. Yo creo que no tiene ningún problema, porque él tiene todos sus problemas pero todos los meses se saca su diploma, el otro es muy listo en la escuela pero nunca sacó diploma aquí y mi hijo desde primero hasta quinto aquí nunca sacó un diploma. Se ha sacado en la otra escuela pero no aquí y yo digo que eso no tiene nada de malo verdad? ...... no o sea que aquí no hacen menos a ninguno.” • It is true, my son has troubles (problems), but each month he gets some kind of an award or recognition at school, either for participation, turning in his work or not talking too much in class. This is really a good idea. No one feels left out. (Translated and paraphrased from Spanish)

28. “… be a consumer as a parent” • “And then we try to work within that realm, and I think probably you need to just be a consumer as a parent, you need to go around and shop and say, this is the kind of place that I know where the people will care about my child, you know.”

29. Systemic Barriers • Classes have too many children • Program variables that are disruptive to children and families • Preparation and experience of teachers in the classrooms where children have the greatest needs

30. “It’s an ironic thing…” • “It’s an ironic thing that happens in education where the hardest of the kids tend to get the least experienced (teachers). Your son has the most exceptional situation because typically, the ED programs are first and second year teachers. Rarely, is it someone like Ms. X - rarely, rarely, almost never. And in my experience in (name of district), those kids, those teachers and no one stays past the first couple of years, and then they go someplace else”.

31. Teachers: Building Relationships vs. Being an Expert • The importance of caring • Frequent, open communication • Maintaining acceptable levels of professionalism

32. “Everybody was involved” • “When they noticed it, they picked up on it and everybody came in and was like, okay…we need to stop and we need to regroup and we need to think about how we need to go about this because it’s not the same way as everybody else. So I…I like that approach that the school took with me and it was a …you know…a group session. Everybody was involved.”

33. Communication • Parents repeatedly mentioned the importance of frequent, clear communication • They wanted the type of relationship with the teacher where they felt they could call or drop by any time • Sometimes parents wanted specific, detailed information related to the IEP, disability, or strategies for helping

34. “I felt a lot more comfortable” • “Right and she sat down and showed me and gave me examples….very in depth…it just made me really happy. I mean I felt a lot more comfortable with him even being in her class because of the work that she put into it.”

35. “Sometimes I just drop in…” • “Si también a veces yo paso y llego con la maestra: Pase, aquí delante de los niños, y le digo, nomás vengo a preguntarle cómo se porta Alejandro y luego voltea y le pregunta a mi niño: Alejandro ¿Qué hiciste ayer?, nada maestra y luego dice: No hizo nada solo estuvo sentado. O sea que, siempre está interesada en mi niño.” • Sometimes I just drop by his room to see the teacher and ask how things are going with my son. The teacher is always interested in my son. (paraphrased and translated from Spanish)

36. Professionalism • Although parents mentioned caring and communication more often than skill, they did expect at least an adequate level of service • Parents wanted teachers who are willing to support and challenge their children

37. “…sometimes we’ll play a game” • “And he said, ‘Well we don’t really do anything in her room. We just …she has us read or sometimes we’ll play a game or sometimes we’ll work on our spelling, but its just basically us practicing at home’. And I said…and it’s frustrating but due to numbers they had to switch them and flip-flop them and give all the kids a fair chance. Well, I’m not happy with that and I know he isn’t either because he’s voiced it to me”.

38. Conclusions • Parents see special education as a method for helping their children and ensuring that their child gets an opportunity to learn as much as possible. • Unfortunately, they also experience barriers in getting into those services, understanding the process, and playing a significant role in decision-making. • Parents experience a great deal of guilt, concern and frustration in raising a child with special education needs and look to the school for answers and support.

39. Conclusions cont. • The perception of the teacher’s skill, caring, and willingness to communicate seems to be fundamental to the perception of services. • Parents tend to take on stronger advocacy roles as they learn more about the system. • Families who do not speak English experience additional barriers to understanding the special education process, participating in decision-making, advocating for their children

40. Culturally Diverse Voices in Special Education • Imbalance of power between professionals and parents often leads to parents as “consent givers” • Some parents have no frame of reference for understanding special education • Language differences contribute to this imbalance • Conflicting styles of interaction – e.g. standardization vs. personalization

41. Understanding Family Culture • Explore the meaning behind the behavior (e.g., not attending meetings or why child’s homework isn’t complete) • Hold families in high regard • Honor the practical knowledge of families • Recognize that “educación” is more than academic achievement

42. Communication • Help parents become decision-makers rather than consent givers. • Increase amount of informal communication (e.g., quick chat after school, notes, phone calls) • Appropriate use of interpreters and comprehensible language • Maintain the relationship • Increase frequency of contact through parent advocates/partners

43. School/Culture/Climate • Certain school cultures seemed to fit family needs better than others (e.g., culture of understanding special needs, bilingual parent advocates) • Creating a positive, welcoming school climate • Build rapport and relationships between teachers and families and families/families • Provide before and after school opportunities • Focus groups at the beginning of the year around important topics (e.g., communication, homework, discipline)

44. General Recommendations • Help parents understand available services, methods for accessing services, and more about the assessment and subsequent IEP process • Increased use of “experienced” parents as advocates for “novice” parents • Enhance communication between all stakeholders (e.g., parents, teachers, service providers) through frequent, informal means • Help teachers understand the importance of their relationships with parents and strategies for enhancing these partnerships.

45. Recommendations cont. • When offering services to parents, be sure to acknowledge the additional concerns associated with parenting a child with special needs. Refer to relevant school and community resources • Increase opportunities for tutoring, field trips, after school programs and sports, as well as recognition for good behavior • Help schools develop welcoming environments to diverse families • Help schools examine and remove systemic barriers to effective services

46. Recommendations for Schools • Build trusting, respectful relationships with the parents • Genuinely care for children and families by attending to more than academic needs • Recognize children for their individual strengths and contributions, not only for academic successes • Involve families in decision-making teams • Attempt to address systemic issues such as overcrowding and lack of professionalism

47. Recommendations for Teacher Preparation Programs • Facilitate conversations about the tensions between the knowledge hierarchy and building a relationship of equality. • Infuse knowledge and experiences with diverse cultures into the coursework and practicum experiences • Encourage future teachers to develop their own cultural identities and recognize their biases

48. “Biggest part of a perfect school” • “You know, he can’t tell me, so I want to know what’s going on. So, I think communication, I think the biggest part of a perfect school would be a communication part. Being able to call that teacher after school and say, “Hey, what kind of a day did my son have? What did you guys do today?”