Transcript Understanding and Partnering with Parents of Children with

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
Overview
o Introduction
o The Studies: Listening to Family Voices
(40 Minutes)
o What we learned (20 minutes)
o Inclusive Education
o Complexities of Power & Privilege
o Discussion & Future Directions
Introduction
o Inclusive Education – the big picture
o Salamanca Statement 1993
o Education for All – UNESCO
UN Commission on Human
Rights
o 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.
Salamanca Framework for
Action
o 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)
EFA & the Right to education: Towards
Inclusion
o 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).
The South African & US
Contexts
o South Africa
o Constitution
o SA White Paper 6 2001 – special needs and inclusive
education
o US IDEIA – LRE
o Tensions about LRE
o U.S. Disproportionality/SA Accessibility/Mainstream
dumping
o SA Outcomes based education – US NCLB
o Reforms compete with each other
o SA Parent Role in shaping inclusive education –
Parent leadership in Disability rights
o 11 official languages in SA – Multiple Languages
in US
o Impact of HIV/AIDS -
Context: Schools
o Discrepancy between well resourced and
poorly resourced schools
o Materials
o Facilities
o Safety
o Professional and community involvement
o Leadership
o Teacher Quality
Context: Classrooms
o Class Size
o Teacher
o Preparation
o Fluency
o Pedagogy: discrepancy between theory, evidence-based &
practice
o Salaries
o Teachers receive innovation rather than create it
o Pedagogy: Tensions between constructivism and
behaviorism…
o Teacher-centered to Learner-centered (what about
learning?)
o Teachers are dying
o Disillusionment with the system
Context: Children/Students
o Poverty
o10 miles walking to schools
oUniforms
oHunger and a system for feeding
children
oSchool Fees
o Children as heads of household
o Learners not children….
oWho are they?
Assets
o Communication
o Open dialogue
o Pragmatic understanding of the relationship
between policy and practice
o Understanding that Inclusiveness is
multidimensional concept– not only a
disability issue
o Inclusiveness is a process (Booth)
o Removal of barriers
o Establishing equity
o Cross-cultural perspectives
Approach
o
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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
o Ongoing conversations with each other..
Focus Groups - USA
o Conducted 13 focus groups at the school where
the child attended with 1-5 participants in each
group
o Semi-structured, open-ended questions and
probes to encourage relaxed conversation
between families
o Duration – 1 to 1 ½ hours
o Groups were tape-recorded and later transcribed
o 3 groups were conducted in Spanish, the rest in
English
SA Interviews
o 47 Participants – across 2 provinces and 4 school
systems
o Tape recorded
o 1 ½ hour interviews – 8 focus groups and 5 interviews
o 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.
o Secondary data were obtained from field notes and
documents.
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).
Questions
o USA: What are parents’ perspectives on
special education decision making and
program planning
o What is the families’ role in the special
education process?
o SA: Listening to and attempting to
describe parents’ experiences of
inclusive education.
Visible and Invisible Disabilities
o 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).
o USA: Learning disabilities, Intellectual Disabilities,
Down Syndrome, Hearing Impairment, Pervasive
DD, Emotional Disabilities, Speech Language
Understanding the data
o Constant comparative method – process of
reading each transcript to see whether similar
ideas are repeated, or new ones introduced
o Categories or themes emerge
o Refining the categories
o Comparing these themes to the literature
Dimensions of Inclusive
Education
•Collaborative Partnerships
•Advocacy and Leadership
•Professionalism
•Emotions as Power
•Class, Language & Race
•Values for Inclusive Education
Collaborative Partnerships
1. Among practitioners, between practitioners &
families, parents and their children
2. Mutual Respect
3. Ethic of collaboration
o Intragroup
o Intrapersonal
o Intraorganizational
4. Coherent Intent
5. Trust, Cultural Sensitivity, Respect for Skills,
Equality
Collaborative Partnerships: SA
o “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.”
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)
Struggling to Partner
o “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.”
o “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.”
o “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)
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 she asked for help.” (translated
and paraphrased from Spanish)
“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.”
Advocacy as Leadership
o Who has the power – who takes the power?
o Parents as Activists
o Negotiated Services….
o Resiliency
o Teachers as co-agitators
o Parents of other students volunteering to pull the
children who had disabilities through….
o Unselfish commitment to teach and support other
families about the system
Advocacy as Leadership
o Is inclusion a right or a privilege?
o Parents who thought it was a privilege – over
accommodated
o Parents who thought it was a right – wanted
“equal job sharing”
o Parents accommodate the system
o Understand the need for developing a legacy
for inclusiveness
o Parents who were wiling to “walk the extra
mile”
o Parents who worked with system’s
assumption that something is wrong with the
child
Advocacy: SA
o “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.”
Identification & Placement: US
Parent
o “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.”
o 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)
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?”
Professionalism
o Double edged sword
o Not all professionals are equal
o The roles of various professionals
o Principals, teachers, school psychologists
o Positive face on making changes with lack
of follow-through
“Make believe positive?”
o “If she’s make believe positive, if
she’s like that, then you don’t know
how to react to that as a parent.”
Professionalism: SA
o “If you cannot include everybody, you are not
welcome at my school…”
o "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).
o “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).
“ Be Prepared to Learn”
o Parents were of the opinion that
teachers do not need to know
everything from the start, ”But you
need to be prepared to learn.”
o “I haven’t a clue what to do but I’m
willing to learn and walk the extra
mile with the child.”
Emotions
o Cycles of emotions that are churned up throughout the
process of advocacy….
o
o
o
o
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…
o Insecurity – once access is gained it could be denied at any
point – because of a change in personnel, the system, a
critical incident
o Emotions as power – they tend to move systems or
people to offer compromise, negotiate…
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.”
Building Resiliency: SA
o “He has to feel the pressure and he has to deal with it
…” (FG.2, 394 – 395
o “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).
o 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).
Building Resiliency: SA
o “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.”
o “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).
Building Resiliency: SA
o 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).
o “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).
o 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).
o "you're part of the school community, but
actually you're still on your own" (I.2, 6 – 7).
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.”
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?”
Values
o Teacher Attitudes
o Doing the right thing – see the child and family as
an opportunity to learn new skills…
o Seeing the work to include as a challenge or a
burden
o Fear – lack of skill
o 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
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. ”
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.”
Inclusive Education: SA
o "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).
Value of Inclusive Education
o “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).
o "We did the right thing, because the world must see them" (I.2,
526).
o “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 kid in an institution and nowadays we
don’t do that anymore” (FG.2, 812–817; see FG.1, 591-592).
Class, Language, & Race
o The role of social construction of class,
language, disability & race is more widely
recognized in SA than it was 10 years.
o In the States, the social construction of class,
language & race plays out when children and
families receive services for special education.
o Informed consent
o Placement
o Communication
Dimensions of Inclusive
Education
•Collaborative Partnerships
•Advocacy and Leadership
•Professionalism
•Emotions as Power
•Class, Language & Race
•Values for Inclusive Education
Discussion
o What did we learn?
o What does it mean?
o What don’t we know?
o What are the limitations of this
study?
o Next Questions
Emerging Comparisons SA & USA
o Are the results compatible?
o Progress has different meanings because of contexts…
o The starting points are very different
o The words are the same but the scale is very different
o Geographically, population, demographics,…
o The themes are similar – the contexts differ
o The national agenda in SA may be more ambitious
than in the US
o No shared, official definition of inclusive education in the US
o Family (US) vs. Parent (SA) definitions – seem similar
Other Articles
Eloff, I., Engelbrecht, P., Kozleski, E., Oswald, M., Swart, E. & Yssel, N. (2002).
Epistemological and methodological issues in a transatlantic research
project on inclusive education. AARE, 1-5 December 2002, Brisbane,
Australia .
Engelbrecht, P., Swart, E., Eloff, I., & Oswald, M. (2005). Parents’ experiences
of inclusive education. AERA: Montreal Meeting.
Engelbrecht, P., Oswald, M., Swart, E., Kitching, A., & Eloff, I.(2005). Parents’
experiences of their rights in the implementation of inclusive education in
South Africa. School Psychology International, 26, (x).
Hess, R., Kozleski, E.B. & Molina, A. (2005). Until somebody hears me:
Parental voice and advocacy in special education decision-making. AERA:
Montreal Meeting.
Swart, E., Engelbrecht, P., Eloff, I., Pettipher, R., & Oswald, M. (2004).
Developing inclusive school communities: Voices of parents of children with
disabilities.