Transcript Understanding and Partnering with Parents of Children with

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
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
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
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
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?
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
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
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
Survey Questions
1. Tell us about your children’s school
experiences – their classes and their
classmates.
2. Tell us about how you first learned that
your child might need special help.
3. 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?
4. How does your child fit in with his or her
classmates?
Survey Questions
5. To what extent has school been good for
your child?
6. We explained the concept of inclusion
and then asked - In what ways has your
child had an inclusive school experience?
7. What would the perfect school be like for
your child?
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.
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)
Parents
Advocacy
Knowledge about the (disability) system
Persistence
Deferring to Experts
Helping their children
Trying additional solutions
Improving the System
Views of Self & Child
Being a Parent
Parents’ feelings
Description of Child
Concerns for their child’s well being
Seeing signs of improvement
Fear of the future
Personal and academic growth
Finding a balance between
frustrating & challenging the child
Schools
Culture/Climate
Context
Climate
Culture
Descriptions
of Services
Variations on Services
Perceived Effectiveness
Goodness
of Fit
Mismatch between student needs & school services
Needing more services
Needing more challenges
Kid and the system
Kid and teacher
Kid and Peers
Systemic Issues
Services barriers
IEP
Attitudes towards parents
Environmental barriers
Special Ed as a haven
School is a difficult place
Opportunities/Activities for Students in Special Education
Partnership with Families
Teachers
Communication
Among professionals
With the system
With families
Professionalism
Support
Accountability
Turnover
Preparation
Disposition
Caring
Supportive of families
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
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)
“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”.
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
“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.”
Parents Changing SelfAssessments
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
“…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”.
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
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
“…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”.
Finding Responsive Schools
Schools with a warm, inviting
atmosphere
The amount of communication,
partnership and perceived caring
Minimal conflict
“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)
“… 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.”
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
“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”.
Teachers: Building Relationships
vs. Being an Expert
The importance of caring
Frequent, open communication
Maintaining acceptable levels of
professionalism
“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.”
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
“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.”
“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)
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
“…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 flipflop 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”.
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.
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
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
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
Communication
Help parents become decisionmakers 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
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)
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.
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
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
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
“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?”