Participation in school for teenagers who use
augmentative and alternative communication
Enablers and barriers to participation
of teenagers with cerebral palsy and speech impairment
Signhild Skogdal, PhD-student/speech therapist
INTRODUCTION
In Norway as in much of the world there is legislation that states that people with disability1
should not be excluded from opportunities to participate fully in society (www.regjeringen.no;
www.who.int; www.unesco.org/education). Since 1981 the Norwegian politics on disability
have stated full participation and equality as goal for every individual (NOU 2001:22 Fra
bruker til borger). Yet many young Norwegians are not engaged in the community to the
extent that they desire (Grue, 1999). The Ministry of Children, Equality and Social Inclusion
states that individuals with disabilities shall be guaranteed a quality of life equal to all other
Norwegians (www.regjeringen.no Barne-, likestillings- og inkluderingsdepartementet). The
underlying premise is that people with reduced abilities should have similar opportunities for
personal growth, participation and life development as all other members of society. These
principles are also the main focus in school, where inclusion2 and tilpasset opplæring3
(“adjusted education”) constitute key concepts to implement full participation and equality
(www.regjeringen.no Kunnskapsdepartementet). Inclusion for all students in Norway is not
yet obtained, even if it is a legal right. Furthermore, inclusion seems to be especially difficult
when there are students in the class with severe disabilities (Dalen 2006). Currently then
inclusion and full participation appear to be idealistic political visions, but not a reality in
schools (Germeten 2007; Haug 1999; Tøssebro 2004).
This project will focus on participation for teenagers with severe cerebral palsy4 (CP) who
attend main stream schools, have little or no functional speech, and use augmentative and
1
Disability, see appendix
Inclusion, see appendix
3
Adjusted education, see appendix
4
Cerebral palsy, see appendix
2
1
alternative communication systems5 (AAC) to communicate. Participation inside and outside
the classrooms will be the focus in this study. In this proposal, I will further explain
participation and inclusion, and the challenges with these related to the use of AAC. Then I
present my research question followed by a methodology discussion. Finally I will give an
overview of the methods and ethical issues in this project, which will be an ethnographic
study, using participatory observation and interviews. Definitions, explanations and
understandings of other central concepts are marked as footnotes and described in the
appendix.
BACKGROUND
Participation in school
Participation is necessary for people’s development and emotional well-being, and is affected
significantly by the quality of their social relationships. The school is an important arena in
which opportunities for participation occur. Recent research and experience suggests that
people with disabilities, including those with little or no functional speech are more lonely
and have fewer opportunities for participation than people without disabilities (Balandin,
Berg, & Waller 2006; Ballin & Balandin 2007; Cooper, Balandin & Trembath 2008) and
NOVA-report "On the threshold" (Grue 1998).
To determine if students participate in school, it is necessary to know what kind of activities
are available in schools for students to participate in, and what activities other students do that
the students who use AAC do not. A school day consists of a schedule with time for formal
and informal activities. Lessons are organized and led by teachers, and in the spare time
between the lessons activities and concomitant relationships are decided by the students them
selves. Lessons in the classroom provide many opportunities for participation and interaction
among the students; (e.g. conversations focused on specific subjects and small talk, tasks
involving the whole class, small groups or pairs). In these activities the teacher has a
responsibility to facilitate the activities so that every student has the chance to participate.
Participation in spare time and other informal situations and along with common interests,
shared by students are important factors which may indicate whether a child is allowed to join
5
Augmentative and Alternative Communication (AAC): Augmentative communication is defined as the
process of augmenting existing abilities, alternative communication is defined as the process of providing a
substitute for speech (Lloyd 1985 in Glennen & DeCoste 1997:5). Further explanation, see appendix.
2
and participate with peers and make friendships (Frønes 2000). To judge whether a student is
participating in school Ekeberg & Holmberg (2004) suggested the following questions:
Has he/she friends at the school? Is he/she invited to parties when the rest of the group is
invited? Can he/she join tours and excursions as the rest of the group? Has he/she
responsibility in tasks and commitments? (Ekeberg & Holmberg 2004: 27).
Inclusion in school
The concept inclusion can be seen as a basis for participation, and can be understood and
explained from different levels and perspectives (Haug 1999). In the introduction inclusion is
briefly described as a concept at the political level, which is important for participation at the
individual level also. In this section the focus will be on inclusion in school, followed by
some examples from research on inclusion in main stream schools with students who use
AAC. The ideal fulfillment of inclusion occurs when the student is fully integrated in the
class, participating competitively or actively academically and socially, and is as independent
as possible (Beukelman & Mirenda 2005).
Some may claim that these aims are too demanding and idealistic (Dalen 2006). From this
definition, if can be argued that few if any students who use AAC will be defined as included.
It would be more realistic to say that sometimes, in some situations, in some environments,
most students are able to feel included. The concept inclusion can be described as a dynamic
process, as an ideal which we always should struggle to obtain. In many cases, it is not
possible to claim that inclusion is fulfilled (Dalen 2006). Indeed some researchers have stated
that an understanding of students’ diversity provides a better understanding and may facilitate
the inclusion of all students (Haug 1999; Hylland Eriksen 2006; Håstein & Werner 2004).
Håstein and Werner further claim that teachers often simplify the differences among their
students, and describe one of their students as different, while considering all the other
students as similar (Håstein & Werner 2004).
Just how the Norwegian government’s concept of inclusion and participation for people with
disability, is meant to be understood and practised, is somewhat unclear. The guidelines for
Opplæringsloven states that main stream schools can organize students in groups as they see
fit, but should aim as much as possible to ensure an inclusive community
(www.regjeringen.no Retningslinje, 25.02.2009. Veiledning til lov- og regelverk for
grunnskolen og videregående opplæring). This flexibility in law seems to contribute to
3
different practices and possibilities for inclusion and participation for students with disability
in Norwegian schools, and may to some extent explain why inclusion is often more an ideal
then a reality (Germeten 2007; Haug 1999; Tøssebro 2004). In other words there seems to be
a gap between the macro level (laws) and the micro level (practice). Consequently, more
research is needed to identify what happens at the micro or practice level (Germeten 2007). In
this project the focus will be on participation of students who use AAC within school hours.
AAC and challenges with participation and inclusion in school
People with severe cerebral palsy may have both intellectual disability and speech
impairments and require augmentative and alternative communication systems. They
comprise a group that can be considered at risk of reduced participation and inclusion
(Pellegrino & Dormans, 1998). Consequently they are likely to experience difficulties related
to access to different contexts and communication opportunities. Young people who use
augmentative and alternative communication aids have stated that they felt lonely frequently
as they lack communication partners. Cooper et al. (2008) reported that young adults with CP
who use AAC stated they feel excluded and discriminated against in society. Initially, at the
start of school, this may not be the case. When children are young, for example, professionals
involved in the project “Kontakt og læring via internett “ (“Contact and Learning through the
Internet”) (Johannessen, 2007) noted that for the first 2-3 years at school children with CP are
invited into and participate in play situations often, however the gap between children with
CP and their peers widens as the children grow older. This applies to participation in
activities, communication and conversation themes. The reasons for this may vary, and
include organizational, relational and individual issues, (e.g. the student who use AAC is most
of the time in a different room then the rest of the class, communication difficulties which
hinder friendship development, lack of possibilities to share interests and participate in
activities and contexts, different learning progression which separate peers in school). A
communication disability may need special provision for students to enable best learning to
take place (Balandin, Sweep & Hand 2008:345). Students’ who use AAC at an early stage of
communication function, or who have peers and teachers who do not understand their way of
communicating, experience problems with learning, participation and friendship development
(Balandin et al. 2008), nevertheless, learning difficulties and the need of AAC do not make it
impossible to have the student who use AAC in the classroom.
4
In summary, inclusion in main stream school is essential for persons who have speech
impairment and use AAC, and school is an important area for participation, making
friendships and developing social skills (Hunt, Doering, Maier, Mintz 2009).
Obviously, students who use AAC cannot develop positive social relationships with
peers with diverse abilities and interests if they are not participating in the same
educational and social settings as those students (Hunt, Doering, Maier, Mintz
2009:249).
Research on inclusion for students who use AAC
Participation occurs in both teacher organized learning and social activities, and in
unorganized activities ruled by peers in school. How to manage inclusion in practice is an
ongoing question. Soto, Muller, Hunt & Goetz (2001) explored educational teams’
perceptions of the critical issues of inclusion for students who use AAC. Their results showed
that inclusion is beneficial for students who use AAC, for parents, the school community and
the students’ peers. Soto et al. identified 13 key indicators for successful inclusion when there
are students’ using AAC. They are;

The classroom teacher includes the student who uses AAC as a full member of
the class

The educational team works collaboratively

Appropriate training is given to all the team and school staff

The presence of a support worker

Involvement and support from peers in class

Interactions between the student who uses AAC and peers both in and out of
school time

Academic participation

Successful use of AAC device

Adequate support for the student within the classroom

Focus student membership and belonging

The school system supporting inclusion

Philosophical support of inclusive education at the district level

Services and supports in place (district/administrative level)
5
Barriers for inclusion were the inverse of the indicators of success. Other barriers reported
were associated with the use of technology, but also barriers related to attitudes. Negative
attitudes could occur for educational team members as a result of fear of failure, uneasiness
about disability, and feelings of being undervalued by the team members. These feelings and
attitudes also had impact on the inclusion for students using AAC (Soto et al. 2001).
Kent-Walsh and Light (2003) interviewed general education teachers about their experiences
with inclusion of students who use AAC. Their study supported the findings from Soto et al.,
and stressed the importance of teachers participating in collaboratively team with the staff
working with the student who use AAC. In addition to this they found that some students who
use AAC did not make adequate academic progress, were socially excluded, and did not have
equal status with their classmates. Teachers considered that the use of AAC in the classroom
could be disruptive, and it was time consuming. Large classes made it difficult to give enough
individual attention to the students who used AAC. The teachers interviewed also felt some
resistance from other teachers against including students who used AAC, and conceded that
teachers’ attitudes could be improved. In summary inclusion is an ongoing issue for students
who use AAC and their educational teams.
Currently the views and voices of students who use AAC and their peers are missing from the
research in to participation and inclusion of students who use AAC in schools. Research into
what happens in school (inside and outside the classroom) is needed.
RESEARCH QUESTION
The main research question will be as follows:
What are the enablers and barriers for participation in school for teenagers
with cerebral palsy who use augmentative and alternative communication?
DISCUSSION OF QUALITATIVE METHODS
Studying people
Social sciences consist of many subjects, but all have the intention to establish knowledge
about social reality. This is done by studying human interaction and relationships between
people, and analyzing the results of such interaction (Johannessen 2005). Research to
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understand people’s actions studied in people’s environments is within a hermeneutic
(interpretive) theoretic tradition, where the researcher has a subjective value loaded role, and
constructs the reality in the frame of a social, historical and cultural context (Postholm 2010).
Subjective meanings are negotiated and formed through interactions with others. This
approach has a social constructivism perspective, where the ontology of data collection
through qualitative research provides a basic view that people’s knowledge, understandings,
experiences and interaction give meaning to what is examined. The epistemological principle
is that there is a need to talk, interact, listen and ask questions in order to discover people’s
knowledge, understandings, experiences and interactions (Johannessen 2005). In this way
knowledge is socially constructed.
Five approaches to qualitative research
Creswell (2007) described five different approaches to qualitative research including narrative
research, phenomenological research, grounded theory research, ethnographic research, and
case study research. These five approaches have several common characteristics, such as data
collection in natural environments, the use of multiple methods for data collection (e.g.
interviews, observations, documents, and audiovisual materials), inductive data analysis,
emergent design (all phases of the process may change), interpretive inquiry, and a holistic
account (trying to develop a complex picture of the problem). The differences between the
approaches impact on what and how to explore through the research question, (e.g. grounded
theory focuses on developing new concepts and theory. Narrative studies tend to focus on
stories gathered from individuals. Case studies may have an individual focus, but may include
with several cases or one topic. Phenomenological studies describe the meaning for several
individuals of their lived experiences of a concept or a phenomenon, and aim to find a
description of the universal essence. Ethnographic studies aim to describe a culture
(Postholm 2010), or group within a culture. The researcher in ethnographic studies describes
and interprets the shared and learned patterns of values, behaviors, beliefs, and language of a
culture-sharing group (Creswell 2007).
Ethnographic perspective
Humans both form and become affected by their culture (Postholm 2010), and a culture can
be defined as the knowledge people use to produce and interpret social behavior (Spradley
1979). This knowledge is learned, and is to some degree shared. The definition is both
materialistic (observational behavior) and idealistic (peoples ideas and views on life)
7
(Postholm 2010). The study of utterances in ethnographic studies aims to identify what impact
the utterances have on interactions, rather than how the utterances reflects the person’s
perspective on the world (Fangen 2004). People’s actions in daily life often occur from
unreflective background expectations and implicit rules, and it is the researcher’s task to look
behind the knowledge taken for granted, and find out the rules behind daily routine actions
(Fangen 2004).
Participatory observation
Ethnographic studies involve extended observations of the group, most often through
participatory observation, in which the researcher is immersed in the daily life in the group,
and observes and interviews the group participants (Creswell 2007). Participatory observation
is often used as a synonym to field work (Fangen 2004). A combination of observation and
interviews are common in ethnographic studies, and the information gathered is supposed to
be complementary. Interviews present people’s subjective expressions about their own
experiences, and provide a review of a happening. Subjectivity also occurs in observation,
because the researcher is selective about what he/she selects from the observations. Yet the
researcher reflects on the selections made, and can use these reflections in the analysis of the
data material. Therefore observations make it possible to move away from the participants’
primary selective perspective a certain extent (Fangen 2004). The researchers’ perspective
and objectivity is an important issue in all research, and can be especially challenged in
observations, because of the researcher’s closeness to the field, and the knowledge and
feelings and actions of studied.
Advantages with participatory observation are that the researcher can get “first hand”
experiences with the field studied, and can come closer to people’s reality. The impressions
the observer gets and the reflections made, will also be part of the empiricism (Fangen 2004).
With participatory observation the researcher will interact and also talk to the participants
during the observations (Creswell 2007), and can then gather comments from the participants
in ongoing actions. In a less participatory role, the researcher could ask about the participants’
opinion at the end of the day, or get information later in an individual interview, or just
interpret the situation. Disadvantages of complete participation can be interferences and too
much researchers’ influence into situations, which can lead to difficulties to see the situation
from a necessary distance as a researcher (Fangen 2004).
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Creswell (2007) sets up the following steps for preparation and implementation of
observations: a) Select a site to be observed, and obtain the required permission to gain access
to the site. b) Identify who and what to observe, when, and for how long. c) Determine
observer roles. d) Design an observational protocol as a method for recording field notes. e)
Record aspects such as portraits of the informant, the physical setting, particular events and
activities, and your own reactions. f) The early observational settings may be times in which
to take few notes and simply observe. g) Inform the participants of the use of data and their
accessibility to the study.
The researcher’s presupposition and roles
In qualitative studies the researcher should enter the field with an open mind, but with enough
knowledge about the field to enter it in an appropriate way (Fangen 2004). Thorough
knowledge on the issue can establish credibility in the field. Being open minded is important
because the research findings can bring new aspects to the phenomenon which the researcher
did not consider prior to the study. Nevertheless, the researcher’s presupposition about the
field, make it possible to search for relevant information and new approaches. The
researcher’s presuppositions must not interfere with the interactions in the field. These
presuppositions will be modified during research, and new questions can be raised. This is
what Habermas (1984) calls the hermeneutic circle.
The observer’s roles can be explained on a continuum from complete participant to complete
observer (Creswell 2007; Postholm 2010). Whether it is possible to be a “complete”
participant or observer can be debated. In any observation the observer affects the
observations, the subject and the situation, and is therefore a participant (Fangen 2004). The
researcher will always be an “outsider” compared to the participants in the group, for example
in this project the group consists of adolescents. Despite this, the researchers’ role, is valuable
(Fangen 2004). The observer has to be conscious of both his/her role and his/her participation,
and must also inform the participants of the observational role (Postholm 2010).
In participatory observation two different actions can occur at the same time; the researcher is
involved in the interaction of the group, and simultaneously observes what is going on
(Fangen 2004), and the researcher has to find a method to combine these to actions. Postholm
(2010) recommended to start as an observer, and move towards participatory observation.
This is the approach that will be used in this project.
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Qualitative research interview
A qualitative individual research interview aims to uncover personal, subjective views on a
phenomenon, and is supposed to indentify the subjective meaning of the interviewee’s
experiences, to uncover the lived world prior to scientific explanations, and to interpret the
meaning of the described phenomenon (Kvale & Brinkmann 2009). Obtaining information
and knowledge produced through interviews requires a delicate balance between the
interviewer’s concern for pursuing interesting knowledge and ethical respect for the integrity
of the interviewee (Kvale & Brinkmann 2009). The interviewer takes part in an “inter-view”
and an “inter-action” about constructing knowledge with the interviewee, and can not be
impersonal (Kvale & Brinkmann 2009:3).
An individual interview is a conversation between an interviewer and an interviewee that has
a purpose, and is organized with different types of structures. There is no equality between the
interviewer and the interviewee in structured interviews, because the interviewer controls the
situation and directs the discussion with planned topics and questions. In semi-structured
interviews, which are most commonly used in qualitative research, the questions are open and
there are also possibilities for the interviewees to bring in new topics. Ethnographic studies
often use semi-structured interviews in combination with informal conversations/interviews as
additional information to observations (Kvale & Brinkmann 2009; Postholm 2010). In
informal interviews the interviewee/participant can explain and explore actions and conditions
from observations. With this there is an interaction between the observations and the
interviews; the observation creates questions, and the comments from interview affect the
focus in observations (Postholm 2010). The total amount of information from observations,
semi-structured and unstructured interviews is a multi approach to the research question, and
can give a broad picture of the culture in the study (Creswell 2007).
Analysis
Data analysis in qualitative methods is inductive and can establishes patterns or themes from
empiricism to theory, often as a dynamic spiral (Postholm 2010). In observational studies the
analysis starts from the time the researcher begins the observations. The researcher choose the
situations, and decides what to note or not, and the notes on the researcher’s own thoughts
during and after observations are also part of the analysis and interpretation (Creswell 2007;
Postholm 2010). It is also recommended to involve participants in reading the field notes and
the researcher’s interpretations. Participants’ views and comments on field notes can alert the
10
researcher to new aspects, and give a spiral effect between empiricism and theory, which can
give a broader understanding of the culture; the main purpose of an ethnographic study. With
this, the participants take part in the analysis, and contribute to the reliability of the study
(Postholm 2010). The ethnographic researcher analyses the data for a description of the
culture-sharing group, themes that emerge from the group, and an overall interpretation of the
group’s actions. Patterns and topics that signify how the group works and lives, are included
in the analysed themes. The analysis might also suggest changes in society that need to occur
to address needs of the group (Creswell 2007:72).
METHODS IN THIS PROJECT
Ethnographic approach with observation and individual interviews
The research question in this project; What are the barriers and enablers for participation in
school for teenagers with cerebral palsy using augmentative and alternative communication?
leads to a qualitative study. I aim to increase understanding of participation in school for
students with cerebral palsy who use AAC. This understanding will be achieved by exploring
the actions, experiences and understanding of what will enable or inhibit participation for
teenagers with cerebral palsy who use augmentative and alternative communication. I will
present the results in texts from observations and interviews.
This proposed project will have an ethnographic perspective, and will use observation and
individual research interview as methods, because it is necessary to study groups in main
stream schools to get understandings and answers to the research question. There are few
studies on the theme, and no researcher has yet studied the question raised in this project from
the students’ perspective. To clearify the researcher’s and the participants understanding of
observed actions, and to illuminate unconscious behavior and knowledge, individual research
interviews will be used as a supplement to the observations.
Process of data collection
In this study I will undertake a field study of how students with and without disability and
teachers interact, how values, communication and interaction appear in the school culture,
inside and outside the classroom, and how this influence on participation for students who use
augmentative and alternative communication systems.
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To understand what occurs in the school context, I will observe how teenagers with cerebral
palsy who use AAC participate in formal and informal situations in school, with peers,
teachers and attendants in main stream school. During the observations I will make field notes
and some audio recordings. Observations in ethnographic studies usually last over several
weeks and months, but my time in this project has its’ limitations, so I have to settle with 1
week of observation in each class. During the observation period I will have informal
conversations or interviews (not planned) with the participants. Postholm (2010) says the
teacher or other participants in classroom observations often give unsolicited information
before or after the classes. This information is valuable, and can also be part of the data,
because it can be spontaneous “at time” comments and explanations on issues from the
observations. Further, after the observation period of each of the 6 – 8 participants and their
classes, I plan to conduct semi structured individual interviews with the AAC users, two of
the peers chosen by the student who use AAC, and one or two of their teachers. An interview
guide with open questions will be used to guide the questions about the participants’ thoughts,
understanding and intentions. This will give me a better understanding and a broader picture
of the culture which is observed. Ethnographers describe a holistic perspective (Creswell
2007), which in this project will relate to how the group members in the class and their
teachers interact and function related to the subject participation and inclusion.
Participants
One of the reasons to do this study among teenagers is that participation and interaction with
peer is special important in the age between 13 and 19 years old. AAC users at this age
usually have more experience and training in using AAC than younger children, and have
thereby perhaps better chances to talk and participate with their peers. Because I am going to
interview the students who use AAC, they have to be able to express themselves in an
interview. The degree of CP is not a critical variable. Which type of AAC system, or whether
the students use high tech or low tech systems are also less important factors. Ideally this
study will include students with a range of skills using a range of AAC systems.
A challenge in this project will be interviewing students with no or little functional speech,
using different augmentative and alternative communication systems. However, as a speech
pathologist who has specialized clinically in AAC I have a solid theoretical and practical
knowledge of communication with AAC users. I have a good understanding of techniques for
conversations with AAC and knowledge of various AAC systems. Furthermore, as a teacher
12
as well as a speech therapist I have interviewed children and adults who use different types of
AAC systems, so I am confident that I will be able to do interviews with the AAC users, other
students and teachers participating in this project.
Selection criteria
The culture group in this study is main stream school classes in secondary and high school
with at least one student who has CP and use AAC.
The selection criteria will be as follows:

6-8 teenagers with CP who use AAC, and go to main stream secondary or high school.

The AAC user has to be able to express his/her own answers, in full sentences or
interpretive single symbols or words, with or without help from an interpreter.

Equal mix of boys and girls (as far as possible) among the students who use AAC.

All participants have to agree to join the study, and to be observed in the class and be
interviewed.

All the students’ parents in each class have to agree that their teenagers are allowed to
participate in the study.
Teenagers who use AAC small group, less than 1% of the school population in U.S. (DeCoste
in Glennen & DeCoste 1997), and are not represented in every main stream school in Norway.
The study has no aim to obtain group representativeness, but to study examples of
participation and inclusion in the school for students who use AAC– in and outside the
classroom. The focus will be on the whole group and how the student who uses AAC takes
part in the group. The observations will reveal which the students and teachers are the most
important focus of interest, and which peers should be interviewed.
Analysis
This project will consist of 6-8 school classes, so the analysis also will be comparative within
and between these classes, which represent the same culture group. The final product will be a
holistic cultural portrait of the total cultural group that incorporates the participants and the
researchers’ views. A range of analysis tools will be considered including conversational
analysis, coding of themes and topics and content analysis.
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ETHICS
Ethical guidelines
This project will require ethical clearance from REK and NSD prior to commencement.
Ethical issues to be considered include informed consent, confidentiality and ethical
management of data.
Ethical considerations
The purpose of this study is to get information about enablers and barriers for participation in
school for teenagers who have CP and use AAC. In addition to ethic considerations described
above, special ethical challenges in this project will raise, among others because a lot of
adolescents are involved – with and without disability, and will perhaps not fully understand
the consequences of taking part in the study. Necessary information to the participants and
their parents has to be given before, during and after the study. It is already known that
inclusion and participation in school for teenagers who use AAC is a challenge for a lot of
schools. From this it is possible that bad examples on participation can emerge in the data.
Such findings require strong anonymity, and shall not in any way harm the participants. In
worst case the researcher has to omit this information. My background as a teacher and
speech pathologist can give me credibility in schools, but my presupposition must not
interfere to the interactions – even if I disagree.
Finance and plan for progress
This project is financed by Høgskolen in Finnmark and University of Stavanger, both places
at the program for special education. The PhD-period is from January 2010 to January 2014.
25% of the time is duty work at the master study in special education at Høgskolen in
Finnmark.
Plan for progress is as follows:
Spring 2010: PhD-courses, poster and participation at ISAAC conference in
Barcelona.
Autumn 2010: Teaching at master study in special education. Shape the project proposal.
PhD-courses. Poster at UiS.
Spring 2011: PhD-courses. First article: Methodology and ethics. Paper at ISAAC Norway
conference. Preparations for the field work (finding participants, etc.).
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Autumn 2011: Teaching at master study in special education. Field work (observations,
Interviews and analysis). Theory article.
Spring 2012: Field work (observations, interviews and analysis). Article about results 1.
Participation and paper at ISAAC conference in Pittsburgh.
Autumn 2012: Teaching at master study in special education. Article about results 2.
Spring 2013: The final article (connecting the whole study).
Autumn 2013: The final article.
Other disseminations as participation at conferences, courses, writing popular science article,
abroad internship, are not planned at the moment, but will also be part of my PhD study.
15
References
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Thomson.
Ballin, L. & Balandin, S. (2007). An exploration of loneliness: Communication and the social
networks of older people with cerebral palsy. Journal of Intellectual & Developmental
Disability, 32, 315-327.
Beukelman, D.R. & Mirenda, P. (2005). Augmentative and Alternative Communication:
Supporting Children and Adults with Complex Communication Needs, 3rd edn.
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Cooper, L., Balandin, S. & Trembath, D. (2008). Loneliness experiences of young adults with
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Appendix
1) The term disability is understood as a result of the combination of the individual´s
condition (impairment) and the demands and barriers in society. The term impairment is
understood as the individual´s medical condition (Grue 2004; Wendelborg & Tøssebro
2010). There are 3 main perspectives of understanding disability:
•
•
•
The medical model; the individual’s impairment causes disability. An individual
approach is the most effective way of teaching children with disability.
The social model; barriers in the environment create disability. The school has to
change to overcome these barriers.
The relational model stresses the complex and situated interaction between disability
factors relating to the individual and ones that relate to the environment. Teaching
must take into account both individual and environmental factors.
(Grue 2004; Hausstätter 2007; Reindal 2007; Wendelborg & Tøssebro 2010)
2) Integration has been an important principle in Norwegian schools since the Blom
committee in the 1970’s, and in the early 1990’s inclusion took over with a focus on the
schoolclasse’s diversity from beginning, in stead of a “regular” class where the “special”
students are allowed to join.
3) Tilpasset opplæring “Adapted education”
The education is supposed to adjust to the individual’s abilities and assumptions.
(Stortingsmelding nr. 30 pp.85 ”Kultur for læring”, Opplæringslova § 1-3.)
4) Cerebral palsy is “a disorder of movement and posture that results from nonprogressive
abnormality of the immature brain”. Damage generally occurs during intrauterine
development, but labor and delivery complications and pre-eclampsia can also result in CP.
About 2 of 1000 live birth in industrialized nations have CP (total about 6000 persons in
Norway), and it has been a little decrease in the number of CP cases in spite of improved
medical neonatal care. In addition to motor deficit, individuals with CP often have cognitive,
vision or hearing problems.
Cerebral palsy is divided into four different types of motor problems:
 Spastic type (motor cortex of the cerebrum)
Diplegic: all 4 limbs involved, legs more involved. Oral musculature not
involved.
Hemiplegia: one side of the body involved. Oral musculature usually not
involved.
Quadriplegia: all 4 limbs involved. Oral musculature involved.
 Ataxic type (Cerebellum)
Speech intelligibility is a problem.
 Dyskinetic type (basal ganglion in the cerebrum)
Variability of muscle tone affects total body and speech musculature.
 Mixed type (motor cortex and basal ganglion)
Extensive brain damage. Total body involvement.
(Glennon & DeCoste 1997).
Oral musculature is involved in most of the types of CP, and AAC is therefore often needed.
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In addition to this classification of CP types, The Gross Motor Function Classification System
(GMFCS) is also used, which describes five levels of the child or youth’s present abilities and
limitations in gross motor function. The five levels are defined as follows:
 Level 1: Walks without limitations
 Level 2: Walks with limitations
 Level 3: Walks using a hand-held-mobility device
 Level 4: Self-Mobility with limitations; may use powered mobility
 Level 5: Transported in a manual wheelchair
(Palisano, Rosenbaum, Bartlett & Livinstone 2007)
The level of gross motor functioning combined with different types of CP, and the
individual’s sensory and cognitive function, are all to be considered when assessing and
implementing AAC systems.
5) Augmentative and alternative communication
Individuals who use AAC are not a homogeneous group, and the group is often divided into
three following groups: Individuals with physical disabilities, individuals with developmental
disabilities, and individuals with severe to profound disabilities (Glennon & DeCoste 1997).
The aims of AAC intervention are to 1) support and increase the individual’s ability to
participate in all environments of choice and 2) enhance opportunities for community
participation (Allan, Balandin, Condon, Lacono, Forster, Fulsom, & Johnson 2004).
The term augmentative in this context means supplemental or additional to speech.
Augmentative techniques (e.g. gestures, and facial expressions) are commonly used when
communicating and interacting with others. The use of the term alternative acknowledges that
there are some individuals whose speech is sufficiently impaired that they must rely
completely on standard and special augmentative techniques, which do not augment speech
but are alternatives to speech (Vanderheiden & Yoder 1996).
AAC system is an integrated group of components, including the symbols, aids, strategies and
techniques used by individuals to enhance communication. The system serves to supplement
any gestural, spoken, and/or written communication abilities. Different AAC systems are
organized in communication books, theme boards and high-tech communication devices.
Direct pointing or switches are used to choose among graphical or orthographical symbols, or
most used sentences.
Symbol for “family”
Bliss board
wheelchair with
high-tech speech device
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