OVERVIEW
Background Information:
Although ISAAC has set up in its Bylaws and governance many opportunities for leadership (e.g. board membership, committee membership, committee chairmanship, Executive Committee membership) it does not have any program in place to assist in the development of leadership skills for people who use AAC.
In 2004 the Executive Director presented the need for leadership development for people who use AAC to the ISAAC Vice President for People Who Use AAC and the President, who overwhelmingly supported efforts to identify critical individuals who use AAC to participate in the development of such a program. The Executive Director then sought input from several ISAAC members and wrote an overview of the issue.
The Executive Director, with assistance from the VP for People Who Use AAC, was invited by the Conference organizers to present this initiative at the Pittsburgh Employment Conference in August 2005, at Pittsburgh, PA, USA. She gained interest and support from several individuals who participated in this conference. Other individuals who use AAC have also been identified as interested in a “Leadership Project for People Who Use AAC”. This area of interest was also supported as an area in which ISAAC could provide assistance in the 2005 Member Survey.
Project development tasks, as outlined below, address the following questions:
1. Who should be and is involved in moving this project forward?
2. What has been learned about leadership and leadership development from those who use AAC and have had leadership opportunities?
3. What needs to be done to assist in leadership development for people who use AAC?
4. How will this be done?
Three phases in this project have been identified:
Phase I: Brainstorming. Through input from people who use AAC, issues and barriers will be identified and prioritized.
Phase II: Program Development. Based on the first phase results a program to address this important area will be developed, along with individuals who will guide this program development.
Phase III: Program Implementation and Evaluation: The developed program will be implemented and evaluated.
SUMMARY FOR PHASE 1 OF THE LEADERSHIP PROJECT TO BE PRESENTED AT THE ISAAC CONFERENCE 2006, GERMANY.
SUMMARY PREPARED BY MELINDA SMITH AND ROBIN HURD
In phase one of the ISAAC Leadership Project, a group of 17 people who use AAC and family members of people who use AAC brainstormed about the barriers to leadership for people who use AAC, in preparation for phase 2 of the project: program development. Members of the phase one group came from 8 different countries and use a variety of different AAC systems.
The goal of the Leadership Project is to plan ahead so that people who use AAC and people who use speech are prepared for people who use AAC to successfully hold leadership roles, both in ISAAC and carrying over into other settings. It is extremely important for ISAAC to work around these barriers because a number of ISAAC members and some of the leaders are going to be AAC users.
It is important to note the change in mindset that even discussing leadership for people with disabilities represents. Until recently, it was unusual to find people seriously considering that people who use AAC have leadership potential. But currently many people, including people with disabilities themselves, are realizing that, though we have made great strides in many areas, we still have room to improve before people who use AAC are consistently able to reach full participation in society.
During our discussions, we talked about three things: what it takes to be a leader, the barriers to leadership, and some supports that have been helpful to those in the group or might be useful to build leadership skills. In the following paragraphs, results of those discussions will be detailed.
SECTION 1: Barriers to Leadership for People Who Use AAC
I (Melinda Smith) had the pleasure in being part of the phase one of the Leadership project, that is very committed and focused on some of the ground work needed for the next phase of this very exciting project. The aim of the Leadership project is to ensure that some important Guidelines will be documented and made available for ISAAC members across the globe, that will provide a much greater opportunity for people who use AAC to fulfill leadership roles within their community and to be part of the global community of AAC users.
When the Leadership forum was set up on the ISAAC website, I was keen to see where people were coming from and what sort of issues would people talk about. For me personally, it struck me just how easy it was to share things in an honest and open way. The connection and the empathy have been very encouraging, and I trust I am not speaking for myself but for all those who supported the forum with contributions.
I would like to focus on two sections for this presentation. The first one being, Barriers. For most people who use AAC they will more than likely have multiple disabilities, other than little or no speech. However it is important to recognize, the term accessibility goes much deeper than making sure the building has a ramp or the toilet has one grab rail. We are talking about multiple barriers that most people do not know about or think about in general talk about accessibility and barriers.
People engaged in the forum highlighted these barriers in very personalized way, but it did not take more than a single response to identify that most of us shared very similar experiences. These are some barriers the Leadership forum highlighted and discussed.
Opportunities
We identified that there is a lack of opportunities to learn or express skills in leadership. There is a lack of training programs that support AAC users to enhance their leadership skills. People who use AAC need to have somewhere to build their knowledge and confidence to be able to demonstrate leadership. People using AAC need to be able to have access to additional support, to support their communication needs while expressing leadership roles. This MUST be a priority to the guidelines.
Time
There are barriers specifically around time. Time and access too. As one forum contributor said, before our day even begins we need to communicate with our care workers who assist us to get ready for the day, and when there are meetings to get to, this can be difficult when meetings start early – it makes it almost impossible to do everything. People need to be more aware that people who use AAC are very restricted to time in their day and it would make an enormous impact if meetings were planned more carefully i.e. middle of the day would be much more convenient. Other barriers include issues around time. The time it takes to compose a message.
Discussions were shared about the ways in which other people wait for responses. How should we maintain the attention we want or need from our communication partner. Many of us know what it feels like when people who are non AAC users hurry us on, cut conversations short and don’t wait for what we have to say. This creates barriers of anxiety, and so it affects our self confidence to enter conversations.
Many of us ask how we get the attention of the others when we are ready to speak. Do we jump in and interrupt and make the ground rules ourselves? Not knowing what to do also creates low expectations for AAC users to feel comfortable enough to participate. So it is important to have ground rules for everyone in a meeting.
Environmental Barriers
Barriers can come from the environment, such as being hard to be heard in a crowded environment. Most communication devices can not be heard in a party or a meeting room full of people.
Social barriers/ expectations/ isolation
Social Barriers: are again about the lack of opportunity and training support for both the AAC user and the non AAC user. We don’t become sociable without experiences and we can only gain those experiences through involvement and activity. The forum recognized the limitation of little or no training programs to gain community participation in social settings.
This often reflects negatively that non AAC users can have low expectations of AAC users. There were thoughts that people who use AAC often have little self-confidence to contribute to conversations. People who use AAC find it hard to ask for the support they need to participate. People who use AAC are often isolated from others who use AAC. It was also identified that a lack of opportunity for AAC users to meet other AAC users created isolation for them.
How do we create an environment where an AAC user no matter how slow they are, can participate and interact more fairly? Training programs must be available that AAC users can become more proactive in a non-AAC user environment. Rules for meetings and social settings must become more consistent within the AAC environment first, ISAAC and community services that support AAC users.
SECTION TWO: What is Leadership and what does it mean to people who use AAC?
When the questions, what is a leader and what makes a good leader – were posted to the forum, our thoughts and view point were similar yet we still have an individual expectation of how we perceive the model of a leader.
I think it is fair to quote that it is difficult for people with disabilities in general to gain the recognition and be valued as a Leader; which makes it twice as difficult for someone who has little or no speech to demonstrate the role as a leader and be regarded and respected as a leader. However in saying this, it is important to acknowledge and recognize that this perception is being challenged and that changes are beginning to take place. The leadership forum has been a significant breakthrough and an example of leaders with AAC leading the way, not just for their generation, but also for our younger generations to come of people who use AAC.
The forum contributors discussed their views on general qualities of a good leader. These are some of the highlighted points. A good leader is someone who listens to and learns from other people. A good leader is flexible in working well with the people he/she has been asked to lead. A good leader encourages others to speak their ideas, supports everyone's participation in the group, motivates or inspires the group to achieve its goals and then celebrates their successes. A good leader is someone whose goal is to develop other good leaders. A leader should be patient, and what the forum contributor means by that is that the leader has to listen to every view of the group and then come to the best possible decision. The leader has to tolerate some criticism.
How a good leader interacts with the team
A good leader surrounds himself or herself with great advisors. A leader gives each team member their own space in which to move and to be creative. A leader is open, honest, frank and a diplomat and to bring those qualities out in all.
Leaders and communication
A leader must be certain that everybody on the team understands what the main goals are by continually reminding all team members what the chosen end results are and how far the goals are from being obtained. Good communication skills are essential to leadership.
Being able to perform these qualities well as a person who uses AAC ( for and people who are non AAC users connected with AAC users in AAC leadership roles) – means there must be Leadership quality guidelines documented and consistently used first. These can be adapted and added to, to ensure that AAC users are fairly included in ways that allow their leadership qualities to be demonstrated in the same way as non AAC users. For a personal example to explain the point, I trust that the forum contributors don’t mind me doing so. In 2005 I was one of 25 participants with a disability who graduated from a year long leadership course. The challenge for me as an AAC user was to develop a stronger understanding of what makes a good leader, but to also develop a stronger sense of assertiveness and confidence to ensure my voice as an AAC user is heard as well as my voice as a leader.
Within ISAAC in general, the potential for AAC users to lead and be recognized for their leadership is a tremendously powerful goal and I speak on behalf of all AAC users and non AAC users that we must work well together to increase the awareness of endless possibilities for AAC users to lead the way.
SECTION THREE: Suggestions for Training
After looking at the barriers to leadership for people who use AAC and prioritizing them, and discussing what it means to be a leader, the committee also discussed possible suggestions for improving leadership skills for people who use AAC in the future.
Any program to support the development of leaders who use AAC must be two-pronged. One portion must help those who use AAC to develop their skills and confidence, the other, equally important component, must help those who speak to view people who use AAC as potential leaders, instead of “consumers” or “clients”, and to become familiar with things they can do to eliminate barriers for those who serve with them and who rely on AAC.
Training for students
For normally developing individuals, learning leadership skills starts early, when they are still in school. Students participate in scout groups and clubs, may serve on student council or work on a school yearbook or newspaper. In each of these situations, they are learning leadership skills while being mentored by an adult.
For people who use AAC, beginning to develop leadership skills at an early age is also desirable. Our committee suggested that some sort of Junior Auxiliary for students who use AAC might be a good way to do this.
In Germany, ISAAC-GSC has set up a mentoring program where people who use AAC progress through 5 specific modules as they learn to share their experiences with AAC with a variety of audiences in a variety of settings. Mentors walk them through the process and document their progress.
In Italy, special educators and family of a student who uses AAC are developing a course that will help him understand his strengths and weaknesses and share how AAC affects his life: a start towards developing leadership skills.
Training for adults
In addition to planning ways for students to learn leadership skills, leadership training must also provide ways to increase skills for those who are no longer students, but who would like to improve their leadership skills.
In the United States, a person who uses AAC shares the seat with a member of the USAAC (US ISAAC Chapter) Board of Directors who is a non-AAC user, with the intention that he learn how the board works so that he will eventually serve on his own.
Several people who use AAC have felt that business courses they took helped them to learn things important to leadership. An important part of leadership training should be learning how committees work, how organizations do business, and so on.
Training for non-AAC users
In addition to these ideas about developing skills for people who use AAC, an important component of any program to encourage leadership for people who use AAC must include training for non-AAC users.
This training should include the basics of how AAC works, accommodations or supports that might be needed and, most importantly, some basic AAC etiquette. This part of the training would be most effective if done, at least in part, by someone who uses AAC.
An important side effect of this training would be to increase the awareness that people who use AAC can be more than a client; they can be a leader, a peer and friend!
Vision of the outcome of the leadership training
The vision is that someone going through the recommended leadership development would earn “ISAAC Leadership Continuing Education Units (CEUs)” to verify that they participated in “ISAAC approved” leadership activities. Once a pre-determined number of CEUs are acquired, the person would receive their Leadership Training Certificate indicating that they have passed the ISAAC standard of leadership training in settings where some people are non-speaking ( we could use the process ASHA uses for determining an “activity” -e.g., lecture, field experience, conference “town meeting/forum”, etc.- that qualifies to give participants CEUs. ISAAC would be able to establish its own peer- reviewed criteria for leadership training CEUs that would be given and when accumulated would result in a certificates for completing Leadership Training.)
Receiving such a certificate would be open to speaking and non-speaking people who are ISAAC members and the aim would be to make it a requirement of anyone seeking nomination to a leadership role in ISAAC. This would likely increase membership as it does for ASHA where many people join just to get the CEUs.
The criteria would be based on meeting the needs articulated in Phase One. The process would look like:
Tasks of the Phase Two Module Leaders
To develop the training curriculum and identify existing sources. Each of the following three modules would contain a “curriculum” or program to meet the training needs that were identified in Phase One.
(We still need one or two people for this first one)
OPPORTUNITIES FOR KNOWLEDGE – knowledge of how committees work; knowledge of how non-profit organisations work; knowing how to plan meetings that incorporate the time required for AAC users to fully participate; documenting leadership quality guidelines addressed in phase one.
Lois Turner and Ashleigh Dukoff (Barb Collier has offered to be a resource)
PERFORMANCE SKILLS- building confidence through experience; getting attention to speak; learning how to ask for and give support, and determine what support is needed; developing good communication skills in meetings and leadership roles.
Melinda Smith and Den Mukerjhee
PERSONAL DEVELOPMENT- breaking isolation by meeting other AAC users; assertiveness training; breaking perceptions that AAC users cannot be in leadership roles; mentoring; student level apprenticeships; self-knowledge (i.e. knowing your strengths and weaknesses).
*In each of these areas there needs to be a strand of training for people who use AAC systems AND for speaking people.
The module leaders would contact other people to help them find resources. Where necessary they will design a module (or curriculum) if no resources exist.
As the curriculum is identified and developed, criteria for what the activities should provide will also be proposed. These criteria will be used to “accept” programs for granting CEUs; for example:
This activity (lecture, field experience such as being an apprentice to a committee member, a course of study, conference program, etc.):
1. Identifies knowledge and skills important for ________ leadership training components.
2. Addresses/describes/discusses the importance of these skills for potential leaders
3. Discusses how leaders demonstrate these skills in leadership roles.
4. Provides specific strategies and ways in which these skills can be further developed.
The modules would be a combination of lectures, field experience and on-line training. The person responsible for the module development would identify the resources needed and set them up. They would also determine “how many” or the needed “hours” required to obtain CEUs. This information will be used by the “core committee” as a whole to determine how many CEUs are needed for the “Certificate for Leadership Training”.
Time line for the Phase Two committee
| April 2007 | Draft curriculum and identify criteria for activities. (As described above.) |
| May 2007 | All Module Leaders and this “core committee” will ‘meet’ to discuss common criteria and adopt the criteria for the Leadership Training Project. |
| July 2007 | Each Module Leader and committee will identify resources for implementing the curriculum, as well as areas in which training needs to be developed. |
| By October 2007 | Module Leaders and committees will solicit/invite papers that meet the identified criteria and can be presented at the ISAAC Conference. This will require that we work with the conference Scientific pprogram committee (Natasha Trudeau and Susan Blockberger) to identify ”leadership training” as an area in which they want papers to be accepted; and, that this committee or another be a part of the paper review to determine if the criteria based on those established in Phase Two are met. The conference theme is leadership and it is already understood that leadership by people using AAC is part of that. |
| March 2008 | There would be an “instructional course” at the conference offering some of the module content. The “Certificate for Leadership Training” and the Program would be promoted in the Information Exchange and the 2008 conference program. |
| August 2008 | Present the training program and deliver those elements that can be done at the conference as an instructional course or other presentations, activities (e.g., a “forum” for people who use AAC). |
AAC Etiquette
(a draft proposed by the phase one task force on the project)
1. Be aware that communicating with AAC takes longer than speech. Allow extra time for the person who uses AAC to communicate.
2. Providing an agenda and/or notes ahead of the meeting can help the person who uses AAC to prepare their thoughts ahead of time and speed up communication.
3. Taking notes can be difficult for someone who uses AAC. Providing notes after the meeting can help.
4. People who use AAC may feel awkward asking for extra supports. It’s ok to offer. It’s also ok for people to say “no thanks”.
5. Technology glitches happen. Be understanding when they happen in the middle of a meeting.
6. Discuss with your team members how they want to indicate that they have something to add to the discussion and what they like their communication partners to do while they compose their words.
7. Scheduling meetings at the beginning or end of the day may make it difficult for someone with disabilities to work around their personal care schedules. Check to find the most convenient time of day for meetings.
8. The communication partner also has an important role to play, but it is still the AAC user’s primary responsibility to take ownership for their communication. Please respect the person who uses AAC as an equal member of the team.