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AAC, ROLE MODELS, MENTORS AND EMPLOYMENT ISSUES: THE PITTSBURGH EMPLOYMENT CONFERENCE

Nicole Fauquier, M.A.
United Cerebral Palsy
of Greater Chicago
Levinson Center
332 Harrison St.
Oak Park, IL
708-383-8887

Bradley Sanders
10112 Potter Road
Des Plaines, IL 60016
847-635-8578
email: brsanders@aol.com

Colleen A. Haney, M.Ed., CCC/SLP
United Cerebral Palsy of Greater Chicago
Purdue University
913 N. 20th Street, Suite #6
Lafayette, IN 47904
317-449-2097
email: haneyc@omni.cc.purdue.edu

Web Posted on: November 30, 1997


Introduction

Ten unemployed adults with severe disabilities from Chicago attended the 1996 Pittsburgh Employment Conference for Augmentative and Alternative Communication (AAC) consumers in the hopes of broadening their life experiences, meeting successful AAC mentors/ role models and learning more about employment issues. The adults are consumers in the Greater Chicago United Cerebral Palsy (UCP) day program. They ranged in ages from 30 to 45 years; all adults used wheelchairs, had varied but limited educational experiences and literacy skills. Four adults had high tech communication devices, one used a manual communication board and several relied on their verbal approximations to communicate. All adults possessed a desire and interest in developing their abilities into marketable skills for the employment world. The 10 adults were accompanied to the conference by family members, personal care aids and their speech pathologist.


Background

The Pittsburgh Employment Conference,(PEC), is a special yearly event that focuses entirely on employment issues of persons using AAC. The idea for the PEC conference was conceived by members of SHOUT, an organization consisting of interested persons from the business community, education and vocational rehabilitation (VR) services in Pennsylvania, who advocate for education and opportunities for persons using AAC. PEC began in 1993 and has since hosted 4 international conferences. Each year over 200 participants and 40+ adults who use AAC gather in Pittsburgh.PEC presents an unique opportunity for everyone to come together to address the important issues of employment, life and the American dream while using assistive technology. It is one of the few opportunities to meet and talk with over 40 persons who use AAC, to hear real life stories and connect with people interested in these important issues.


Planning and Preparation

The UCP adults became aware of PEC through staff that had attended the conference. Planning for the 1996 conference began one year in advance. On site staff took the major responsibility for planning the activities and making the necessary phone calls for prices, availability and physical arrangements for the trip. The speech pathologist, recently hired for the program, began working with the consumers one month before the trip. Her activities to prepare the consumers consisted of group and individual sessions.

The following steps outline the preparation activities:

  • 1. Call a travel agent, airline, and/or railway service to compare fares.
  • 2. Call SHOUT and verify cost for conference registration.
  • 3. Identify Personal Care Attendants (PCA's) who are able to participate.
  • 4. Tally which consumers would like to attend and total their personal costs.
  • 5. Determine VR Scholarships available from SHOUT for each consumer.(The VR scholarships help defray registration costs.)
  • 6. Begin brainstorming for possible fundraising opportunities to help with expenses.
  • 7. Discuss the purpose of the trip as it compares to previous trips/vacations consumers may have taken.
  • 8. Compile cost summary and present information to families.
  • 9. Develop curriculum & communication to prepare for the trip.
  • 10.Discuss additional items and concerns for the trip (e.g., weather, clothing and battery chargers for power chairs as well as AAC devices).

Preparing for the Conference

Prior to the conference, consumer group meetings began by introducing the theme of the conference, "Town Meeting" and discussing its possible interpretations. The PEC proceedings were used to introduce the guest speakers and the topics of their presentations. Next, consumers were asked to listen to the title of each speaker's presentation and infer, based on the title, what questions they might want to ask the speaker. Consumers had diverse literacy skills ranging from emerging literacy to fifth grade reading level. The challenge of this exercise was vocabulary and comprehension.

The consumers' questions were conveyed through a variety of modalities. Several individuals utilized their voice output communication devices while others used a combination of alphabet boards, gestures, and verbal approximations. Consumers' questions were recorded, transcribed and later transferred to index cards. Each question card contained the name of the speaker to whom the question was addressed, the consumer's name, "UCP of Chicago" and their question. Each consumer's questions were attached collectively on a string to the wheelchair for easy access. Consumers with voice output devices were encouraged to preprogram their questions as well as developing index cards as back-up systems in case of device failure.


Participation

All UCP adults were prepared to participate in the conference and interact with other participants and presenters. Many took advantage of the opportunity to meet new friends, learn from others' experiences and collect information from the conference proceedings. Nine adults actively participated in the Town Meeting and asked questions following the presenters' speeches. One adult was asked by the PEC conference committee to present and he delivered a prepared speech. UCP staff videotaped portions of consumers' communication interactions throughout the conference.

All adults enjoyed the 4 day excursion to Pittsburgh, which also included visiting tourist spots, riding the famous incline and Gateway Clipper. The experience was exhausting but rewarding.


Debriefing

After arriving back in Chicago, the consumers met to review the videotape and to offer impressions of their first conference experience. Consumers reviewed the videotape to critique themselves and their peers' communication. In most instances, consumers were unable to recognize good communication strategies modeled by the presenters or their peers. They were unaware of appropriate social models or communication repair strategies.

Following a series of questions proposed by the speech pathologist, a discussion elicited a summary of PEC. Overall the consumers described their experience as positive and rewarding. PEC motivated the group for their own personal development. Seeing others communicate demonstrated to them that dreams were possible. There were mentors from which to learn and to model.

All consumers were struck by the impact of the critical importance of communication. Many saw for the first time, persons communicating naturally and competently with communication devices. These were not just discussions about common topics but an opportunity to be creative, novel and unique. Leaving their natural environment, families and caregivers, challenged consumers to consider that communication is more than a device or spelling board, or having your PCA talk for you. The PEC experience has caused staff and consumers to reevaluate current curriculum at the UCP center and refocus attention on group interaction, basic conversation and pragmatic skill development.

Aside from the major issues within communication, the following areas were outlined to discuss and develop into the curriculum with greater focus:

  • 1) Appearance/grooming, (e.g., personal hygiene, clean clothing);
  • 2) Nutrition and its importance in improving attention and level of functioning;
  • 3) Choosing a competent PCA capable of providing assistance responsibly and in a timely manner; and
  • 4) Conference Etiquette (e.g., holding hands, getting up during a speaker to sit near your friend is inappropriate.)

Plans for 1997

Twelve consumers from the Chicago UCP program plan to attend the 1997 PEC conference in August. Planning began immediately following the 1996 conference. Center staff have been guiding consumers in taking more responsibility to independently plan and prepare for this event. UCP's Center curriculum has been redesigned to incorporate the skills consumers targeted and that were discussed above. Two fundraising events have been planned. Ongoing fundraising to prepare for other opportunities has been addressed. Consumers have expressed interest in attending and presenting at other conference.

Recommendations for persons planning to attend a conference from a consumer:

  • 1)The attendee needs to go with a clear goal in mind. What do you want to accomplish by attending? What am I looking for at PEC?
  • 2)Study the program. Who are the speakers? What are the subjects or topics of the event? Which ones have to do with my interests or educational development?
  • 3)Have an open mind to pick up any helpful ideas of how others problem solve or network.

My Personal Goals as a result of attending PEC:

  • 1) I want to make myself more marketable.(This is one important thing I learned at the conference.)
  • 2) Upgraded my computer and computer skills.
  • 3) Obtain a good communication device and learn how to communicate quickly.
  • 4) Keep my designing skills active and help others with their dreams.

"As far as motivation, PEC gave me hope. I have never seen so many people with speaking devices. Attending PEC helped me to see other people with similar disabilities who got jobs, kept jobs and are doing well with life. Because of the conference, I feel that there has to be a job out there that fits my specific qualifications. For example, I would like to work with professionals on assistive technology projects and design. So it's up to me to get prepared, get the equipment, keep on looking, and not get discouraged." - Brad Sanders


Summary and Recommendations:

1. Inclusion in all life events for persons with disabilities is important not only in the home, school, job setting and community but in the assistive technology community. Each year as conferences are planned, more work needs to be done to assure that consumers are an active and vital part of every conference.

2. Adults with disabilities need conference participation to broaden their life experiences and opportunities to network with others from diverse backgrounds and experiences. It is important that these opportunities are provided early in a person's life. Information as well as opportunities to participate both as presenters and attendees at conferences should be available for families and consumers. Registration and attendant participant fees should be substantially lower for persons with disabilities. Each organization sponsoring a meeting should assure a scholarship fund to guarantee a percentage of their attendees with disabilities receive reduced fees.

3. Communication is critical to community involvement. Increased focus, attention, education and funding for AAC is imperative.

4. Good communication skills are critical to persons with disabilities if they are to seek employment. Professionals serving students and adults with disabilities need to focus much attention to functional communication, as well as conversational skills and pragmatics.

5. Role models are important for all people learning new skills or developing talents. AAC consumers need opportunities to personally meet successful augmentative communicators as role models, mentors and friends. The mentoring experience breeds and models mentoring for the future.

6. Receiving a communication device does not make one a communicator. Many persons using AAC need training not only in device or tool use but in strategies to build communication competency in all environments of life. Because of the nature of communication device use, consumers may also need additional preparation time or advance preparation for challenging communication opportunities.

7. Preparing persons with disabilities who use AAC to attend conferences requires planning and active aprticipation from everyone involved. It is not unrealistic to begin organizing one year in advance. Consumer enjoyment and personal satisfaction can only be enhanced by the ability to participate in the responsibilities that go hand in hand with scheduling such an event.

8. One advantage of attending conferences for professionals is the experience of socializing with peers. The same opportunity is equally valuable for consumers who often are unable to interact with individuals outside their immediate home, vocational, or school environment. Exposure to peers who vary in their experiences based on different disabilities, communication techniques, as well as social and cultural backgrounds, enable consumers to see the opportunities of life.

9. Professionals or persons in the field often are taught or have learned the above items from experience. We often forget that consumers of AAC services may need to experience for themselves the "need for and power of" communication competency beyond their family and friends.