Augmentative and Alternative Communication

ISSN: 0743-4618 (Print) 1477-3848 (Online) Journal homepage: https://www.tandfonline.com/loi/iaac20

Building capacity in AAC: A person-centred

approach to supporting participation by people
with complex communication needs

David McNaughton, Janice Light, David R. Beukelman, Chris Klein, Dana

Nieder & Godfrey Nazareth

To cite this article: David McNaughton, Janice Light, David R. Beukelman, Chris Klein, Dana
Nieder & Godfrey Nazareth (2019): Building capacity in AAC: A person-centred approach to
supporting participation by people with complex communication needs, Augmentative and
Alternative Communication, DOI: 10.1080/07434618.2018.1556731

To link to this article: https://doi.org/10.1080/07434618.2018.1556731

Published online: 27 Feb 2019.

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AUGMENTATIVE AND ALTERNATIVE COMMUNICATION
https://doi.org/10.1080/07434618.2018.1556731

RESEARCH ARTICLE

Building capacity in AAC: A person-centred approach to supporting

participation by people with complex communication needs
David McNaughtona, Janice Lighta, David R. Beukelmanb, Chris Kleinc, Dana Niederd and Godfrey Nazarethe
a
Department of Educational Psychology, Counseling, and Special Education, The Pennsylvania State University, University Park, PA, USA;
b
Madonna Rehabilitation Hospital, Lincoln, NE, USA; cHolland, MI, USA; dNew York, NY, USA; eBryn Mawr, PA, USA

ABSTRACT ARTICLE HISTORY

Effective communication is based both on the capacity of the person with complex communication Received 30 May 2018
needs, and of other key stakeholders (including communication and education professionals, family Revised 9 August 2018
members, community partners, and healthcare professionals), to ensure that appropriate AAC supports Accepted 1 November 2018
are provided. In this paper, we describe strategies to build awareness of AAC and to assist people
KEYWORDS
with complex communication needs in obtaining needed services; to build the knowledge, skills, and augmentative and
attitudes of AAC service providers; to provide instruction for people with complex communication alternative communication;
needs, as well as communication partners and advocates; and to develop communication supports in partner training; instruction;
society more broadly. We also provide an agenda for building capacity in research and development community participa-
activities to support full participation by people with complex communication needs through- tion; inclusion
out society.

AAC is my bridge to the world, and a window for the world to employment (McNaughton & Arnold, 2010), and
see the real me. It supported me in moving from frustration to independent/supported living (Blackstone, Beukelman, &
communication, and from isolation to relationships with others.
Yorkston, 2015).
AAC has given me the tools to live independently, to participate
in society, and to contribute to the lives of others as a husband, As Beukelman (1991) noted, however, “As with magic, the
teacher, and friend. (C. Klein, personal communication, May supports needed for success are not always apparent.
10, 2018) The equipment and material costs are obvious; however, the
instruction and learning costs are not” (p. 4). There are now
The use of augmentative and alternative communication
increased AAC options available, and a richer understanding
(AAC) has been likened to magic in its ability to surprise us
of the ways that these options can be of assistance. In some
with unexpected outcomes (Beukelman, 1991), as illustrated
ways the availability of more choices has increased the pri-
in the quote by Chris Klein, an individual with severe cere-
mary challenge during the AAC assessment and intervention
bral palsy. As a child, Chris had limited access to AAC sup-
process: to ensure the appropriate identification and devel-
ports and was frequently frustrated by breakdowns in
opment of an AAC system (including not only AAC strategies
communication at home and at school. He is now an expert and techniques but also instruction for stakeholders) to sup-
user of AAC technologies, and, with the use of his AAC devi- port communication and participation for the individual with
ces, teaches in college classes and interacts with pre-service complex communication needs across a range of environ-
education and communication professionals across the US ments and partners (King & Simmons-Mackie, 2017; Light &
(Klein, 2012). McNaughton, 2013).
The effective use of AAC has enabled both children and Changes in technology and intervention techniques and a
adults with severe disabilities to communicate and partici- growing realization that AAC can be of benefit to many indi-
pate in a wide range of environments and activities (Light & viduals not traditionally considered for intervention pose
McNaughton, 2012; von Tetzchner et al., 2018). Clinicians special challenges for professionals who may have received
and researchers have demonstrated the successful use of limited pre-professional training and have limited experience
AAC by individuals who have received limited services in the with clinical decision-making (Dietz, Quach, Lund, &
past, including children as young as 9-months of age McKelvey, 2012; Lund, Quach, Weissling, McKelvey, & Dietz,
(Hemmingsson, Ahlsten, Wandin, Rytterstro €m, & Borgestig, 2017). Additionally, many individuals who could benefit from
2018) and elderly adults with dementia (Lanzi, Burshnic, & AAC may not be aware of the potential impact of AAC inter-
Bourgeois, 2017). There is growing evidence of the successful vention nor receive the supports needed for full participation
use of AAC to support participation in key community in society (Light & McNaughton, 2013). Effective use of an
activities, including education (Chung & Carter, 2013), AAC system requires not only identification of the

CONTACT David McNaughton [email protected] @AAC_Penn_State Department of Educational Psychology, Counseling, and Special Education, The
Pennsylvania State University, University Park, PA 16802, USA
ß 2019 International Society for Augmentative and Alternative Communication
2 D. MCNAUGHTON ET AL.

components of the AAC system, but also supports for learn- use a communication device the way that she does”. I have seen
ing for both the person with complex communication needs (too many) K/1/2 classrooms populated by non-verbal kids where
I am told that certain children “are learning to use
and his or her communication partners (Beukelman, 1991;
communication boards” or “have just started learning how to use
Kent-Walsh, Murza, Malani, & Binger, 2015). an iPad app to communicate” or “will soon be evaluated by the
As part of the special issue on the state of science and assistive technology team and will probably start using a
future directions, this paper addresses the supports required communication device in the near future”. This is not because
to provide person-centred AAC services for people with com- these children needed to wait until K/1/2 to be ready to use a
communication device. This is not because preschoolers aren’t
plex communication needs to enable them to achieve full
capable. This is because most preschoolers (and pre-preschoolers,
social participation. The term person-centred planning is used frankly) don’t have the access to the augmentative and
to emphasize the importance of the person who uses AAC in alternative communication (AAC) that they need (Nieder, 2013).
all phases of the AAC assessment and intervention process.
In order for individuals with complex communication
This may involve the formal development of a documented
needs to receive appropriate AAC assessment and interven-
vision plan with short- and long-term goals (O’Brien &
tion services, they must either self-identify to service pro-
Pearpoint, 2007) or, more simply, the regular recognition of
viders or be “found” and assisted in accessing services (e.g.,
the central role of the person who uses AAC in all planning
a referral). Furthermore, there is a need for everyone
and decision activities (Williams, Krezman, & McNaughton,
involved in the process to know what they do and do not
2008). In describing the goal of participation, we draw upon
know and be aware of when to act independently and when
the International Classification of Function, Disability and
to seek additional assistance. For many people with complex
Health (ICF) model from the World Health Organization
communication needs, the first step in the AAC assessment
(2001), and its emphasis on intervention (e.g., therapy, public
education) and prevention (e.g., accessible services) to process involves a “Finder”—a person who is familiar with
address activity limitations and participation restrictions. As the potential impact of AAC and helps people (who would
noted by Fried-Oken and Granlund (2012), the ICF model benefit from AAC) contact service providers (Beukelman, Ball,
encourages the recognition that the optimal functional out- & Fager, 2008). Finders may include early intervention per-
come of AAC intervention is not simply the use of symbols sonnel, general education teachers, physicians, nurses, and
or AAC devices, but also involvement and the sharing of family members (Beukelman et al., 2008; Binger et al., 2012).
meaning in everyday life situations. Finders play a critical role. At present, as noted previously
The determination of needed supports is an individualized by Nieder (2013), too few individuals understand the poten-
process that may include assisting people with complex tial of AAC to have a positive impact on the communication
communication needs in obtaining needed services; develop- of individuals with a broad variety of disabilities (and across
ing the knowledge, skills, and attitudes of AAC professionals; a broad range of ages). Increasing the number of Finders
providing instruction for the person with complex communi- and their level of awareness is one of the greatest challenges
cation needs, as well as communication partners and advo- faced by the field of AAC. As noted by Binger et al. (2012),
cates; and developing communication supports in society Finders do not need to know the full range of AAC solutions,
(including community partners and healthcare professionals). simply that AAC exists, and to help connect the person with
We also provide an agenda for building capacity in complex communication needs with AAC professionals
research and development activities that will be needed to (see Table 1).
create and sustain change not only for traditional AAC team There is evidence, however, that this first step in access-
members, but also throughout society. ing assessment services is sometimes the most difficult.
Based on an analysis of the National Core Indicators data
from 26 states in the US, Stancliffe et al. (2010) reported that
Assisting people with complex communication only a small percentage (8.6%) of individuals with intellectual
needs in obtaining needed services disabilities who had complex communication needs had
access to any form of aided or unaided AAC. Without these
Dana Nieder is the mother of Maya, a young girl with com-
communication supports, the vast majority of people with
plex communication needs who was introduced to AAC
severe and profound disabilities rarely, if ever, would have
before she was 2-years old. In the passage below, Dana
interacted with others in their community and would have
described her daughter and the importance of early access
had no means to contribute to decisions on where and how
to AAC:
they would live. In a study of the experiences of 16 parents
My daughter, Maya, is almost 5 years old. She can clearly speak of children with autism spectrum disorder, Hines, Balandin,
approximately 15–20 words. With her talker (an iPad with a and Togher (2011) reported that, even though the parents
communication app) she can speak approximately 700 words,
with thousands more available at the touch of a button if she
were engaged with multiple service-delivery professionals,
needs them. With her voice, she can say “Mommy” and “Daddy”. referrals to communication services “appeared to happen by
With her talker, she can tell me that today is Friday and she’s chance” (p. 263). Hustad and Miles (2010) reviewed the com-
going to the therapy gym in the afternoon and she wants to ride munication skills and educational plans of 22 young children
on the big swing and the tire swing and do an art project. … As with cerebral palsy and reported that, among all children
we have spent the past three months searching for an ideal
kindergarten for Maya, we have seen many (many) schools and
who could have benefitted from AAC, only 57% had AAC-
met with numerous doctors and therapists for evaluations. We focused speech-language goals/objectives in their educa-
have heard, over and over again, “I’ve never seen a preschooler tional plan. For adults with complex communication needs,
 AUGMENTATIVE AND ALTERNATIVE COMMUNICATION 3

Table 1. Target groups, roles, capacity building goals, and strategies to maximize participation for people with complex communication needs.
Target group and roles Capacity building goal and strategies
“Finders” General awareness of AAC and benefits
 Help connect persons with complex communication needs with  Support information and advocacy organizations in providing empirically
AAC services supported AAC information
 Infuse AAC into pre-service and in-service coursework of education, medical,
and rehabilitation professionals
 Raise awareness of the positive impact of AAC by supporting people who
use AAC in a full range of activities
AAC service providers Expert knowledge, skills, and attitudes to provide effective AAC assessment and
 Support communication and participation of persons with complex commu- intervention
nication needs and key stakeholders  Promote understanding of a full range of individualized AAC techniques
and strategies, and professional responsibilities
 Develop and evaluate impact of empirically-supported clinical guidelines
 Teach expert decision-making strategies, including supporting participation
of person who uses AAC and key stakeholders in AAC assessment and the
intervention process
 Provide interprofessional education to build collaboration skills
People with complex communication needs Widely and easily accessible expert AAC assessment and intervention
 Develop operational, linguistic, social, and strategic skills to communicate  Encourage person-centred approaches to assessment and intervention
successfully  Teach skills needed for communication and participation
Communication partners and advocates Knowledge, skills, and attitudes to provide communication partner support
 Use partner strategies to support communication by people with complex  Provide instructional activities and resources (e.g., web-based and blended
communication needs instruction)
 Develop AAC systems that are more easily learned by communica-
tion partners
Community partners and healthcare professionals Knowledge, skills, and attitudes to support participation and communication in
 Support successful interactions with people with complex communication community activities
needs in community settings (e.g., restaurants, medical offices)  Develop communication access standards and provide support for adoption
 Investigate new approaches (e.g., trained communication assistants)
AAC researchers Broad network of AAC researchers
 Build capacity in research  Prepare individuals to conduct and disseminate research
 Emphasize collaboration with stakeholders and researchers from other fields

including ALS, aphasia, and intellectual and developmental Both assessment and intervention activities should regu-
delays, access to AAC services varies widely (Beukelman larly target participation in typical environments, both to
et al., 2008; Mirenda, 2014), and some individuals report sig- address AAC intervention in real world conditions and con-
nificant delays in receiving services (Nordness, Ball, Fager, tribute to wider societal awareness of the positive impact of
Beukelman, & Pattee, 2010). AAC. In addition, the AAC community should continue to
In order to help people who might benefit from AAC con- work with information and advocacy organizations to pro-
nect with appropriate services, efforts are needed in at least vide AAC information resources for people with complex
three main areas. First, there is a need to raise broad aware- communication needs, family members, and the broader
ness in society of the positive impact of AAC by supporting community. For example, the International Society of
the participation of people who use AAC in the full range of Augmentative and Alternative Communication (ISAAC), in
21st century experiences. There is increasing evidence of the conjunction with the US Society of Augmentative and
benefits of AAC for meaningful participation in the commu- Alternative Communication (USSAAC), have hosted a series
nity (Batorowicz, McDougall, & Shepherd, 2006; Hajjar, of webinars on a variety of topics related to AAC (ISAAC,
McCarthy, Benigno, & Chabot, 2016; O’Neill, Light, & 2018). In addition, Communication Matters (2018), the UK
McNaughton, 2017), post-secondary education (Chung, chapter of ISAAC, provides a variety of information materials
Behrmann, Bannan, & Thorp, 2012), employment to provide access to services and training information, while
(McNaughton, Bryen, Blackstone, Williams, & Kennedy, 2012), the AAC Learning Center (2018), a joint project of the
and medical services (Burns, Baylor, Dudgeon, Starks, & Rehabilitation Engineering Research Center on Augmentative
Yorkston, 2017). It is not only the right of people with com- and Alternative Communication (RERC on AAC) and
plex communication needs to be full members of the commu- Pennsylvania State University, provides structured learning
nity, but their participation also increases the number of experiences, links to print materials, and webcasts by both
people who are aware of the potential impact of AAC inter- AAC researchers and people who use AAC.
vention. Michael Williams, a long-time practitioner of AAC, Second, beyond raising general awareness of AAC, work is
encouraged people who use AAC to embrace this role as needed to infuse AAC into the pre-service and in-service
communication ambassadors, noting: coursework of the broad range of professionals (e.g., general
education teachers, daycare workers, doctors, nurses, voca-
Every time you step out of your home, cruise down the street, tional rehabilitation staff) who may, if only occasionally,
catch the eye of a stranger, make a purchase, attend a ball game,
encounter a person who would benefit from AAC
or say hello to a child, you are making a significant change in the
expectations the world has of augmented communicators. (Beukelman et al., 2008; Yorkston, Baylor, & Burns, 2016).
Interacting with people as you live your life is a major These individuals play especially important roles in those sit-
contribution to society (Williams et al., 2008, p. 203). uations in which a person may only temporarily require AAC
4 D. MCNAUGHTON ET AL.

(e.g., post-surgery), but will require rapid access to AAC dur- others who use augmentative communication, want good jobs,
ing an especially critical time of their lives (Happ et al., good places to live, and individuals who care about us and love
us. It is important for the individuals who work with people who
2011). Typically, health, education, and other professionals
use augmentative communication to believe they can succeed at
receive only minimal training in interacting with people with high levels. (Rackensperger, 2006)
complex communication needs and have only a limited
understanding of the potential benefit of effective AAC strat- Since Tracy wrote those words, she has successfully com-
egies and technologies (Finke, Light, & Kitko, 2008; Happ pleted a doctoral programme, obtained employment in a
et al., 2011). They should be introduced to the broad range university setting, and organized the assistance needed to
of people with complex communication needs for whom live independently. These achievements make clear the
AAC interventions could be of benefit, as well as the breadth importance of providing AAC assessment and intervention
of AAC options and services that are available. The goal is services that not only meet current communication needs
but also anticipate and enable planning for future communi-
that they understand their role as a Finder and are able to
cation growth. This must be a team effort driven by the
help an individual access needed services.
needs, skills, and interests of the person with complex com-
Third, for those who have a professional role in assisting
munication needs (Beukelman & Mirenda, 2013; Williams
the identification process, work is needed to ensure that
et al., 2008), and requires that team members have the
AAC team professionals (e.g., speech-language pathologists,
knowledge, skills, and attitudes to provide appropri-
special education teachers, occupational therapists, assistive
ate assistance.
technology specialists, applied behaviour analysts) have a full
In the US, the speech-language pathologist (SLP) on the
understanding of the potential of AAC intervention, their
AAC team has the professional responsibility for assessing
professional responsibilities, and the limits of their own
the communication skills and challenges of the individual
expertise (Lund et al., 2017). An AAC intervention should not
with complex communication needs, as well as the interven-
be limited by the knowledge of the service provider; some-
tion needs of communication partners (American Speech-
times Finders must play the role of finding the needed
Language-Hearing Association, 2016). There are marked dif-
expertise for an existing AAC team or determining how to
ferences, however, between the performance of clinicians
make an appropriate referral.
with different levels of training and experience. Based on
Ideally, the benefits of AAC would be so commonly
interviews with 25 SLPs with varying levels of experience,
known that a referral to an AAC professional would become
Dietz et al. (2012) reported that novice AAC clinicians (indi-
as commonplace as the knowledge that someone with an
viduals who infrequently conducted AAC assessments)
injured leg can benefit from crutches or a wheelchair
described spending considerable time collecting broad back-
(Williams et al., 2008). Increased public awareness, however,
ground information during assessment but had limited
creates both benefits and challenges. In the area of tablet
understanding of how this information would actually assist
technology, for example, increasing numbers of individuals
in the AAC intervention. In contrast, AAC specialists first
with complex communication needs (and their family mem-
gathered case history information in order to focus on spe-
bers) are seeking out and purchasing communication tech-
cific areas of need and to identify individual interests and
nologies, including AAC apps (Caron, 2015; McNaughton &
needs of the person with complex communication needs
Light, 2015; Meder & Wegner, 2015). Social media tools, how- and other key stakeholders. The assessment activities
ever, have also spread the use of communication interven- described by specialists then included the identification and
tions for which there is no evidence of efficacy or are trial use of different components of an AAC system and pro-
counter-indicated by existing research (Hemsley & Dann, vision of instruction for both the person with complex com-
2014). The challenge is to create and raise awareness of munication needs and key stakeholders. Notable in the
empirically supported information resources (Schlosser & comments of the AAC specialists was the importance of indi-
Sigafoos, 2008) that can assist self-empowered individuals vidualization: working with the person with complex commu-
(including the person with complex communication needs, nication needs and key communication partners to identify
families, and other key stakeholders) in making informed communication priorities; learning the unique communica-
decisions and knowing when to act independently and when tion needs, skills, and challenges of each individual; and
to seek professional assistance. Of course, referring for serv- identifying personally motivating vocabulary and contexts for
ices is just the first step; it is critical that service providers communication.
are knowledgeable and skilled in delivering AAC services. While there has been some growth in the number of
speech-language pathology programmes that include course-
Developing the knowledge, skills, and attitudes of work in AAC, there are still concerning gaps in many pro-
AAC professionals grammes (Costigan & Light, 2010). An analysis of the
curricula for SLP graduate programmes in the US reveals that
When she was 28 years old, Tracy Rackensperger, a young only 68% in the US have stand-alone coursework in AAC and
woman with complex communication needs who uses AAC, 20% have no AAC coursework at all (Molt, 2017).
described some of her life goals: There is a growing awareness that coursework in AAC is
Being able to be independent and having the freedom to control just the beginning. As in many fields, the challenge is to
my own destiny are the most important things to me. I am a assist the communication professional in learning to transi-
very ambitious individual with lots of goals for my life … I, and tion from novice solutions (i.e., habitual solutions based on
 AUGMENTATIVE AND ALTERNATIVE COMMUNICATION 5

the comfort and familiarity of the professional with a particu- Supporting AAC team members
lar approach) to expert solutions (i.e., individualized solutions
There are many different ways in which AAC team members
driven by the specific needs and skills of the person with
can acquire new knowledge and skills, and research is
complex communication needs) (Schlosser & Raghavendra,
needed to identify the training techniques that are perceived
2004). To facilitate the transition from novice to expert, AAC
as the most effective, efficient, and socially valid (Crema &
clinicians must learn how to make use of evidence-based
Moran, 2012; Quinn, Beukelman, & Thiessen, 2011). AAC
practices during the assessment and intervention process to
team members at all levels of experience may benefit from
support the full participation of people who use AAC in a
clinical guidelines to ensure regular consideration of evi-
wide range of communication environments. Bereiter and
dence-based practices in AAC assessment and intervention
Scardamalia (1993) have described the importance of sup-
(Beukelman, Garrett, & Yorkston, 2007; Binger et al., 2012;
ported problem-solving in the acquisition and generalized
Dietz et al., 2012; Lund et al., 2017) and coordinate the infor-
use of expert strategies. The use of case studies can provide
mation needed to make individualized solutions to address
students with a clinical context for new information and personal needs (Dietz et al., 2012; Lund et al., 2017).
introduce them to the wide range of goals and strategies Stakeholders frequently describe the challenge of dealing
(e.g., enabling the participation of the person who uses AAC with multiple team members, all with different perspectives
and family members, working with team members) that are and areas of expertise. As one parent has described:
critical elements of successful AAC assessment and interven-
… A very negative experience is the lack of collaboration, each
tion (Cook, 2011; McCarthy & Dietz, 2014). For practicing
sector of professionals believes they can do it on their own … In
clinicians, the use of ongoing professional development the early years we had about 40 people involved with [Josh]
groups to discuss clinical challenges, whether live (Williams, from physicians to school personnel and they wouldn’t talk to
John, & Beatty, 2017) or through teleconference (Hardesty, each other … There are lots of good skills around the table and
Warren, Arce, & Bowser, 2017), has been recommended as lots of good problem-solving skills, but because of professional
ideology and people not knowing how to work together, the
effective methods for building professional competencies.
whole process is diminished (Lund & Light, 2007, p. 328).

Clinical guidelines for AAC assessment and intervention

Supporting the participation of persons who use should emphasize a trans-disciplinary team-based approach
AAC and key stakeholders in which the person with complex communication needs
Novice clinicians (including those who are beginning as well (and their communication partners) play key roles
as those who have few opportunities to practice) require (Sonnenmeier, McSheehan, & Jorgensen, 2005; Soto, 1997).
instruction in order to engage and sustain the participation Interprofessional educational activities should be provided at
of people who use AAC and key stakeholders from the the pre-service and in-service level to help ensure that pro-
beginning of the assessment/intervention process. While fessionals have the knowledge and team work skills needed
for working as part of an AAC team (Blackstone et al., 2015).
clinicians frequently believe they are providing family-cen-
Although the development of clinical guidelines for the
tred services, family members often report that they do not
field of AAC is a new area of research (Simmons-Mackie,
experience family-centred services (Mandak & Light, 2017).
King, & Beukelman, 2013), early research demonstrates the
As Dana Nieder (the parent of a child with complex commu-
benefit of organized supports for planning AAC assessment
nication needs) noted, the failure of communication profes-
and intervention activities. For example, Karnezos (2017)
sionals to fully understand and consider the views of
reported that the provision of a checklist of key areas for
parents, spouses, and other key communication partners can
AAC assessment resulted in a more thorough discussion of
lead to misunderstanding and reduce the likelihood of suc-
the skills, interests, and needs of the person with AAC during
cessful intervention:
the planning of an AAC assessment by AAC team members.
Parents may not be holding back because AAC is tough to learn, Both parents and professionals reported an interest in using
or difficult to logistically manage, or cumbersome, or unfamiliar. the checklist in the future to assist team discussions and
They might be really scared of making the “wrong” choice for
decision-making.
their child—they might worry that providing AAC to a little one
may seem like an easier way to access words right now, at the
Much of the research to date on team decision-making
cost of risking long-term speech development. It’s your job (as has focused on service delivery models in which team mem-
professionals) to create a supportive, open environment in which bers engage in face-to-face discussion (Batorowicz &
these discussions can be had, to acknowledge these (very real) Shepherd, 2011); a team-based approach may be especially
fears, to provide information and support, and to help these challenging in areas in which participants are geographically
families connect with other AAC families (online or in person)
dispersed (Binger et al., 2012). New communication technolo-
(Nieder, 2017).
gies may assist innovative solutions. For example, the
The attitude of people with complex communication Wyoming Institute for Disabilities makes use of video confer-
needs (and other key stakeholders) will have a profound encing technology to provide weekly professional develop-
impact on acceptance and use of the AAC system, and their ment, peer-coaching, and case co-management assistance to
views and priorities must be included in every step of the educators, administrators, and service providers throughout
assessment and intervention process (Johnson, Inglebret, the state of Wyoming (Hardesty et al., 2017). During video
Jones, & Ray, 2006). conferences, service providers participate in de-identified
6 D. MCNAUGHTON ET AL.

case discussions and can receive follow-up assistance for communication partners. As Chris Klein, an adult with cere-
implementation in their local schools. Such approaches not bral palsy and a proficient user of AAC technol-
only share important information for the team members for ogy commented:
a particular case, but also help build capacity for delivery of … teaching people how to communicate socially has been
future AAC services. overlooked. We don’t know how to teach this and thus we work
on the things that we know how to do best. However, by doing
that, we are limiting the person. The goal of AAC should be to
Supporting learning for the person who uses AAC say anything that you want to say. It isn’t about telling a person
what you need and/or want. It’s about becoming an effective
The identification and development of an AAC system is only communicator, so you can build relationships (Klein, 2017, p. 63).
the beginning; equally important is the support for the per-
son who uses AAC and his or her communication partners in In order to promote the development of relationships, it
learning how to use AAC to address a variety of needs in a will be necessary to consider the learning needs not only of
variety of environments. At age 39, Randy Horton, an adult the person who uses AAC but also their communication part-
with cerebral palsy, obtained his first AAC device. He ners (Beukelman & Mirenda, 2013; Chung & Carter, 2013;
received 96 hours of instruction that addressed not only Light & McNaughton, 2015).
device operation but also linguistic, strategic, and pragmatic
competence. As Horton, Horton, and Meyers (2001) noted, Supporting learning for communication partners
Teaching is the missing key. During most training for and advocates
professionals specializing in assistive technology, there is no
focus on implementation. Courses just address choosing the The importance of providing appropriate instructional assist-
“right device”, usually based on what the person can do in a one- ance for the communication partners of people who use
hour session … People without disabilities receive 12 years of AAC has been well documented (Kent-Walsh et al., 2015;
writing and language teaching during school … Usually the Simmons-Mackie, Raymer, & Cherney, 2016). Family members,
consumer is given two to six hours of teaching how to use the education professionals, and other key stakeholders need
device. Extensive, intensive teaching during implementation is
the key to success (p. 49).
knowledge not only in the operation and upkeep of the
components of the AAC system (e.g., learning signs, updat-
Individuals with both developmental and acquired disabil- ing vocabulary, and stored messages in AAC devices) but
ities have described the initial challenge of learning to make also in techniques to develop the functional use of the AAC
effective use of AAC technology. Rackensperger, Krezman, system over time (Johnson et al., 2006). As a parent of a
McNaughton, Williams, and D’Silva (2005) reported the expe- young adult with autism in a study by Hamm and Mirenda
riences of seven adults with cerebral palsy who learned to (2006) commented: “Receiving technology is only half the
use speech-generating devices. The participants described in battle—receiving expertise and services so that the technol-
positive terms instructional activities such as practice in func- ogy can be used in day-to-day, functional contexts is the
tional opportunities in the community and learning from other half” (p. 143).
peers who use AAC. The importance of ensuring initial posi- Effective support for the use of AAC will require educa-
tive experiences in the introduction of a new AAC device tional activities for not only key stakeholders and advocates,
was memorably summarized by one participant who wrote but also the many individuals who interact with the person
that, when first confronted with the challenge of reading who uses AAC. Adults with complex communication needs
device manuals in order to learn the AAC device, “My mom who reside in medical or residential care settings, for
and I wanted to throw it off a cliff … ” (Rackensperger et al., example, may receive services from as many as 15 personal
2005, p. 173). care attendants in a week (Blackstone, 2005). Although inter-
Current AAC systems often require significant effort and actions involving AAC depend upon both the skills of the
time to learn (Light & McNaughton, 2013). There is not only person with complex communication needs and their part-
a need for technical development that can help reduce the ners (Beukelman & Mirenda, 2013), communication partner
learning demands of AAC systems and be used to teach training has received limited research attention. A review of
functional use in a wide variety of contexts (Klein, 2017; 30 years of research published in the AAC journal, for
Light & McNaughton, 2014). Individuals who use AAC need example, provided evidence that 85% of intervention
learning opportunities for basic device operation or vocabu- research focused solely on the person with complex commu-
lary retrieval under controlled conditions as well as func- nication needs, while only 15% addressed intervention with
tional use in key communication environments. To date, the communication partner (McNaughton & Light, 2015).
much of the intervention research in the field of AAC has tar- Recent reviews of research in communication partner
geted simple requests for objects and activities (McNaughton training in AAC document the positive impact of instruction
& Light, 2015) and focused on decontextualized settings, in interaction strategies (e.g., providing an expectant delay,
with the researcher as the communication partner (Snell modelling the use of multiple modes of communication) for
et al., 2010). Future research must address the impact of a range of individuals (Kent-Walsh et al., 2015; Simmons-
interventions targeting a wide range of communicative func- Mackie et al., 2016). For children with complex communica-
tions, skills, and psychosocial factors (Light & McNaughton, tion needs, training for parents, educational staff, and peers
2014) in the natural environment, with typical in school settings has received special attention (Brock &
 AUGMENTATIVE AND ALTERNATIVE COMMUNICATION 7

Carter, 2013; Chung, Carter, & Sisco, 2012; Douglas, 2012; with a traditional grid display) resulted in a greater number
Therrien, Light, & Pope, 2016). In terms of adults, medical of conversational turns with a communication partner, longer
and other healthcare professionals (Happ et al., 2011), as utterances, and less frustration.
well as caregivers (spouses, children, close friends), are the New strategies are needed to assist people with complex
most frequently studied (Simmons-Mackie et al., 2016). communication needs who face the challenge of transition-
Of special interest are those communication partners for ing across environments—moving from contexts in which
whom instruction must be specifically modified. For example, skilled partners are available to settings in which partners
peer training in preschool and school environments has may be unfamiliar with AAC (Beukelman, 1991). These transi-
often received special attention (Mirenda, 2014), perhaps tions are often especially problematic for beginning commu-
because these are the environments in which children spend nicators who benefit from knowledgeable partners (Hamm &
a significant period of time at the ages at which communica- Mirenda, 2006). Insufficient opportunities to use AAC, failure
tion and social skills are learned. At the same time, training to provide vocabulary that meets the needs of the individual,
activities must be adjusted to the developmental needs of and limited numbers of trained communication partners are
the partner, and to establish and maintain “typical” peer-to- frequently identified sources of abandonment for AAC sys-
peer communication exchange. For example, Thiemann- tems (Johnson et al., 2006).
Bourque, McGuff, and Goldstein (2017) described the benefit One promising approach is the development of AAC sys-
of teaching peer partners without disabilities to stay, play, tems that are more intuitive for both the person with com-
and talk with preschoolers with severe ASD who made use plex communication needs and the communication partner
of speech-generating devices. The intervention for the peer (Light, McNaughton et al., 2019; O’Neill et al., 2017). Caron,
without disabilities included both training in how to be a Light, and Drager (2016) provide evidence that changes in
responsive communicator as well as coaching during play the AAC device can make it easier to add vocabulary and,
activities with the preschooler with ASD, and produced posi- thereby, assist the development of communication systems
tive changes in both peer partner behaviours and the com- that are more responsive to vocabulary needs in a particular
munication by the preschoolers with ASD. Trottier, Kamp, context. The goal is that both the person with complex com-
and Mirenda (2011) reported similarly positive findings in munication needs and his or her partner view the AAC sys-
teaching six peers without disabilities to play with two 11- tem as appropriate to the individual and an important
year old children with ASD who used a speech-generating support to positive interaction (Hines et al., 2011; Johnson
device. The peers were provided with instruction and scaf- et al., 2006).
folded prompting from a trainer to engage the participation
of the two children with ASD in a board game. Again, the
Developing communication supports in society
use of the targeted peer behaviours resulted in an increase
in appropriate communication by the children with ASD. Although some communication environments can be antici-
One novel approach may be to reduce the need for part- pated for an individual and preparations can be made to
ner training by making use of AAC system components that provide training for communication partners, people with
are more easily learned and are embedded in the activity complex communication needs will also participate in situa-
itself. Therrien and Light (2018) examined the impact of pro- tions in which partners have limited opportunity/capacity for
viding an iPad#1 with a communication app on the commu- traditional partner training activities. David Chapple, an adult
nicative interactions of five pairs of children (i.e., a child with cerebral palsy and a proficient user of AAC technology,
without disabilities and a child with ASD and complex com- described his reflections on a visit to the emergency room at
munication needs). The communication app used visual a local hospital:
scene displays to create digital texts on the iPads so that the I wasn’t very surprised that none of the nurses and doctors had
books contained pages with relevant vocabulary pro- ever seen an AAC system. They had a lot of questions.
grammed as hotspots to support communication. Joint Sometimes I felt like they were more interested in my ECO (a
engagement in the book activity increased for all dyads, and speech-generating device) rather than my health … It was a
little overwhelming because I was in a lot of pain and I didn’t
four of the five children with ASD demonstrated increases in
feel like giving a lecture about how to use the ECO. I know that
communicative turn-taking with peers. The use of AAC as a seems sarcastic since the nurses needed to know everything, but
universal environmental support (Therrien & Light, 2018), a that was my mind at the time. Once I had a little rest and been
shared means of communication that can be easily used by given something for the pain, I realized I needed to make people
all participants, may be an important strategy to provide understand me so they could give me the best care
(McNaughton et al., 2012, p. 49).
access to a quickly learned communication technology, as
well as to assist in the development of communication skills The increased participation of people who use AAC in
across communication partners and communication contexts. society has raised new awareness of the wide range of envi-
Similar results have been observed for adults as well. Brock, ronments in which communication supports may be needed
Koul, Corwin, and Schlosser (2017) reported that, for adults (King & Simmons-Mackie, 2017). There are two key communi-
with aphasia, the use of a visual scene display (in comparison cation partner groups of special interest: (a) community part-
ners who may infrequently interact with people who use
1
The iPad is a registered trademark of Apple Inc., Cupertino, CA. www. AAC (e.g., restaurant workers, shop keepers), and (b) health-
apple.com. care professionals who may have multiple brief interactions
8 D. MCNAUGHTON ET AL.

with a wide range of people with complex communication least a small number of interactions with people with com-
needs (e.g., nurses in an intensive care unit). plex communication needs, but will generally have only brief
interactions with people with a wide variety of communica-
tion skills and needs. These circumstances create special
Supporting community partners challenges, as these healthcare professionals will need to
As people with complex communication needs expand their learn general strategies and techniques that can be used to
participation in societal activities, they will increasingly assist many different people who require AAC rather than
encounter individuals (e.g., store employees, cafe workers) customized strategies that have been demonstrated to be
who have had limited, if any, interactions with people who successful with a specific individual. Simmons-Mackie (2018)
make use of AAC. The use of an introduction strategy on the suggested the use of communication partner instruction
AAC system (i.e., appropriate information about the individu- based on communication accommodation theory: helping
al’s means of communication, instructions on how the new communication partners learn how to support the general-
partner can best communicate with the individual who uses ized use of AAC strategies such as writing, drawing, and pho-
AAC) is a common clinical recommendation (Light & Binger, tographs to supplement residual spoken communication for
1998). Light, McNaughton, et al. (2019) advocate for new those who experience aphasia. In a series of studies, Happ
approaches to this challenge and for research and develop- and colleagues demonstrated both the positive impact of
ment in techniques to provide just-in-time training (e.g., the generalized training on nurse-patient communication (Happ
playing of brief videos demonstrating the use of preferred et al., 2014), as well as the challenges of meeting the educa-
partner strategies) for new communication partners in tional needs of large groups of professionals with many
the community. learning demands and limited time for training activities
Solarsh and Johnson (2017) have documented an innova- (Happ et al., 2015).
tive approach to the challenge of building supports for com- Traditionally, communication partner instruction has been
munity participation, and describe the process of engaging delivered by a trained professional in one-on-one or small
with people with complex communication needs, speech-lan- group training (Kent-Walsh et al., 2015). As such, it is often
guage pathologists, and community members to create com- dependent upon the availability of both the professional and
munication access standards. Businesses and organizations are the communication partners, and access to these opportuni-
audited for their use of recommended communication practi- ties can be limited by both scheduling and funding chal-
ces and those that meet the standards earn the right to lenges. Web-based instruction may provide one technique to
describe themselves as communication accessible. As of 2017, quickly provide targeted instruction; however, future research
some 160 businesses and organizations in Victoria, Australia, should investigate the impact of blended instruction, that is,
have been awarded a communication access license. combining web-based instruction and live feedback on the
In another approach, Collier, McGhie-Richmond, and Self use of targeted skills (Douglas, McNaughton, & Light, 2013;
(2010) investigated the use of trained communication assis- Quinn et al., 2011).
tants: persons who had been taught to assist in but not
influence communication exchanges between people with
Building capacity in research to improve practice,
complex communication needs and partners who may have
policy, and technology solutions
limited interaction with people with severe disabilities. The
assistants accompanied people with complex communication Many factors have contributed to the growth in the use of
needs within community settings. All nine persons with com- AAC over the past 35 years: consumer advocacy, research,
plex communication needs reported a high degree of satis- technical development, and policy development have all
faction with the project. As one participant (who used contributed to improved access to AAC services for people
partner-assisted scanning with a communication board) with complex communication needs. Many stakeholders
noted, the communication assistant programme extended have played important roles in directing this progress. For
benefits to people with complex communication needs that example, the involvement of people with complex communi-
are often provided to other people with disabilities: cation needs (and other advocates) has led to important
changes in policy and outcomes in education (e.g.,
Participant: I NOT HEAR I GET HELP COMMUNICATION. I NOT
SPEAK I GET NO HELP … Individuals with Disabilities Education Act (IDEA), 2004), fund-
ing for AAC technology (e.g., Steve Gleason Act, 2015;
Project manager: Do you mean: If you were deaf, you could get
Technology-Related Assistance for Individuals with
help from a sign language interpreter to help you communicate.
But you can’t speak and you get no services like that? Disabilities Act, 1998), employment accommodations (e.g.,
Americans With Disabilities Act, 1990), and participation in
Participant: ‘yes’ (nods head and lifts eyes) (Collier et al., 2010,
society (e.g., United Nations, 2006).
p. 53).
AAC research has also played a role in many of these
changes and has grown dramatically in recent years
(McNaughton & Light, 2015). A search for journal papers
Supporting healthcare professionals
using the terms “augmentative communication” or
There are many healthcare professionals (e.g., nurses in an “augmentative and alternative communication” produced
intensive care unit) who can be reliably predicted to have at only eight articles for the 10-year period between 1975 and
 AUGMENTATIVE AND ALTERNATIVE COMMUNICATION 9

1984; a search of the years 2005 to 2014 yielded 762 journal (and share with) those who approach the provision of com-
papers on the topic of AAC (McNaughton & Light, 2015). munication supports from their experiences with different
Clearly, however, not all change in the field of AAC follows a populations and different theoretical perspectives.
sequence of scientific discovery, dissemination in scholarly
journals, uptake by professionals, and use by stakeholders
Directions for future research
(Mirenda, 2017). With both positive and problematic results,
some of the most dramatic changes in the field have been Much of the research in the field of AAC has focused on
carried out with no or limited research evidence (Hemsley & the development and evaluation of new intervention
Dann, 2014; Mirenda, 2014, 2017). At the same time, sus- approaches (McNaughton & Light, 2015), with only limited
tained research has resulted in a richer understanding and research (e.g., Collier et al., 2010; Karnezos, 2017; Mandak,
improved clinical practice in areas such as access technolo- Light, & McNaughton, 2018; Solarsh & Johnson, 2017) on
gies (Fager, Fried-Oken, Beukelman, & Jakobs, 2019); the evaluating the impact of capacity building activities. Clearly
development of more effective AAC displays (Light, there is an ongoing need to investigate the impact of
Wilkinson, Thiessen, Beukelman, & Fager, 2019); and AAC new intervention approaches (Beukelman, 1991; Mirenda,
technology for communication and participation in school, 2014) and broaden the areas in which intervention is pro-
employment, and independent living (Light, McNaughton, vided (Iacono, Trembath, & Erickson, 2016). We have
et al., 2019). reached a state of knowledge, however, in which it
Such research is critical to provide evidence-based instruc- is equally critical to build capacity in our use of
tion for pre-service and in-service professionals; guide clinical currently known evidence-based practices. As Strain
practice; and give direction to technical development, policy, (2018) commented:
and legislative changes. To ensure the continued growth of We desperately need practice-based evidence, as exemplified
the evidence base, there is a need to increase the number of by systematic inquiry to understand the conditions under
individuals with the expertise to not only develop and con- which individuals and organizations are attracted to evidence-
duct research, but also encourage application of knowledge based practices in the first place, how we might assist
practitioners in getting to a necessary level of implementation
in clinical and technical development activities; integrate
fidelity in the second place, and, finally, how we can prevent
knowledge and information from multiple fields; and assist individuals and organizations from being successfully lured
dissemination through teaching, presenting, and writing by the next new intervention fad and abandoning the
(Beukelman, 2017). Although there are increasing numbers of high fidelity use of evidence-based practices (Strain, 2018,
individuals who conduct research in the area of AAC, there p. 2).
are only a small number who specialize in the area. For Successful implementation of AAC intervention requires
example, a recent search of Web of Science2 research that all key participants have the knowledge, skills, and
addressing intervention for adults who require AAC found attitudes to contribute to a team-based, person-centred
only five researchers that had published five or more approach. Research is needed to better understand how
research papers in the past 15 years. people with different learning needs (e.g., people with
Because of the dramatic growth of the field of AAC, there complex communication needs, family members, professio-
are now new challenges and opportunities for the research nals) and different levels of access to information resour-
community. The inclusion of people with complex communi- ces can best be provided with individually appropriate
cation needs in general education classrooms, post-second- instructional activities. The growth of the Internet has
ary education, work settings, and the community, and the made it easier to make information on AAC available;
growing awareness of communication needs in a variety of however, the simple provision of information does not
settings across a person’s lifetime (e.g., medical settings, guarantee uptake and use. The field is also faced with the
legal settings), have sparked a new series of questions that challenge of providing direction for distinguishing between
require future research. To address these questions, AAC empirically supported information and uncorroborated (or
researchers will need to collaborate with key stakeholders, counter-indicated) intervention practices (Hemsley &
other AAC researchers, and with researchers from other Dann, 2014).
fields, including those who offer multiple theoretical or dis- The field also faces the challenge of adding content on
ciplinary perspectives. For example, researchers and clinicians AAC to existing pre-service programmes, especially those
with an interest in aphasia have a rich history of investigat- that provide no or limited coursework in AAC (Molt, 2017).
ing and documenting the impact of communication supports, Research is needed to identify (a) the mix of coursework and
defined as “any intervention programme, technique, strategy, activities, including academic content on research, theory,
training, material, or modification that supplements speech and evidence-based practice; (b) presentations by people
and language skills resulting in improved communication with complex communication needs; and (c) clinical experi-
interactions between people with aphasia and their commu- ences that are most likely to lead to the acquisition of
nication partners” (King & Simmons-Mackie, 2017, p. 349). needed knowledge, skills, and attitudes for beginning profes-
Researchers with experience in AAC have much to learn from sionals (Balandin & Hines, 2011; Meder, 2017; Yorkston et al.,
2016). Awareness of an intervention is just a first step in the
2
This search was conducted using the topic fields for 2003–2017 (Web of functional use of a new approach; additional assistance is
Science, 2018). needed to adapt the approach for individual needs.
10 D. MCNAUGHTON ET AL.

The challenge is to identify a combination of strategies that Funding

will provide effective, efficient, and socially valid support for
The contents of this paper were developed under a grant to the
implementation of empirically supported AAC assessment Rehabilitation Engineering Research Center on Augmentative and
and intervention practices. Alternative Communication (The RERC on AAC) from the US Department
of Health and Human Services, National Institute on Disability,
Independent Living, and Rehabilitation Research (NIDILRR grant #
Conclusion 90RE5017). The contents do not necessarily represent the policy of the
funding agency, and you should not assume endorsement by the federal
There is increasing evidence that the “magic” of AAC can be government.
achieved for all, and that appropriate intervention can lead
to improved education, employment, community participa-
tion, and independent living outcomes (Hajjar et al., 2016;
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