Third Annual AAC Conference in Cuzco, Peru:
Access to Information in Emerging Countries

By Samara Andrade
Central Coast Children’s Foundation, Inc.


The caretakers of Daniel, a child with special needs living in Latin America, never knew his interest and ability in using a communication board.  An accidental discovery came about by properly positioning Daniel, changing the set-up of the wheelchair he already had, and using a tray. The only one available belonged to Equip KIDS International and happened to be transparent with communication symbols mounted underneath and clearly visible through the plastic. As soon as it was in place, Daniel’s attention was riveted on the symbols and he began to reach out and touch them. Although unplanned it was a perfect example of the message Equip Kids emphasizes – that proper positioning is a foundation that opens the door to so many other things.   What was the forum for this discovery that brought this technology into the hands of Daniel?  


The third annual AAC (Augmentative and Alternative Communication hereafter referred to as AAC) Conference, put on by Equip KIDS (Kids in Developing Societies) International, was held in Cuzco, Peru in August 2007.  This conference was the third conference promoting AAC in South and Latin America.  The first AAC conference took place in 2003, in conjunction with a multidisciplinary conference on Rehabilitation and Developmental Disabilities (also organized by Equip KIDS). The second conference took place in 2005 and was bigger and better than the first.  The Cuzco Conference presented 6 North American speakers who gave introductory lectures and workshops about AAC over a four-day period.  These were complimented with lectures on related topics given by speakers from around South America.

Approximately 600 people attended, unfortunately due to the massive earthquake that shook Peru days before, three who had registered died.  Others were forced to cancel because they were afraid of leaving their families in case another earthquake. To pay homage to the victims of such a shocking and devastating event, the opening ceremonies included a beautifully done slide show of people at the disaster, and all stood to honor the memory of those who died and the struggles of those who survived.

Equip KIDS International is a non-sectarian, non-governmental charitable organization dedicated to helping children with disabilities around the world reach their full potential.   The organization works to produce and distribute various AT products, such as communication devices and wheelchairs, in developing nations.  They also focus on the education of children with disabilities and education of their caregivers and other practitioners in the field.  The organization plays particular focus to serving individuals of all socio-economic classes and distributes donated goods to impoverished children and youth.  EQUIPKids is primarily the only organization working to develop AAC programs in this region.

The office in Peru is a small group whose goal is to help as many children in need as they can. AAC is one of their primary interests and objectives and as such they spend a lot of time and effort trying to provide opportunities for others to learn more about AAC (both through them and through others). One of the major issues they have discovered is that there is very little information about AAC in Spanish. This has improved slightly over the years, as materials begin to be translated however language is a real barrier.  According to Dana Cornfield, the Founder of EQUIP Kids, it has always been her dream to be able to provide opportunities for her own staff to learn as much about AAC as possible, to become leaders, and share what they know and have learned with others across Latin America.  “I guess you could say I’ve always aspired to the train the trainer model (with our staff being the trainers), as this way we can really have a much bigger impact. That said, Jorge and Sandra (our staff) often miss out on the best educational opportunities (such as our conference) because they are so busy organizing such events so others can learn.”

It is extremely useful and valuable to the people in areas where AAC is just emerging in Latin America to have an international conference and a forum where new ideas, technologies and sharing of information and networking was possible.  While the past ten years have witnessed two significant changes in Augmentative Communication: the exponential volume of available technologies to support people with disabilities and the amount of information about assistive technology on the Internet, the resources and tools that are available in the emerging world remains quite limited.  According to Dana, Augmentative and Alternative Communication is still very new to Peru and the Latin America region in general.  PECS has been promoted and taught in Peru (to a limited number of people) for many years (10+). Other forms of AAC are beginning to spread and there is currently quite a lot of interest and excitement about AAC. There are a handful of schools (special education schools) in Lima using AAC strategies, as well as one or two in Arequipa. There are also a growing number (though still relatively few) of professionals around the country beginning to incorporate AAC strategies into their work in rehabilitation centers, hospitals and schools. A couple of universities are also beginning to take an interest in AAC. However, only Equip KIDS International and PECS provide any kind of workshops or educational opportunities around AAC.

According to Caroline Musselwhite (Assistive Technology Consultant, Special Communications and key presenter in Cuzco), “I think the uniqueness (of EQUIPKids) is the breadth of their mission. Most of the mission takes place in Peru and Bolivia, with direct services, materials donation, and educational support.  It seems that their success comes from support both within and without the organization.  Connections include fundraisers in Canada as well as innovative funding in country (ex:  Inca Trail Challenge – a fundraising trip through Peru, taking advantage of the guiding and trekking skills of Dana’s husband!)  The conference demonstrated numerous in-kind donations, and sought support from international organizations (like ISAAC) as well.”

The AAC Conference in Cuzco provided a forum for a mutual exchange of information, both helping EQUIP kids understand the needs in Peru and how they might best help, but also perhaps more important the conference provided an opportunity for professionals, practitioners, parents, and children in Latin America see the variety of tools and aides that can be used to work with children with disabilities.  This is was of significant value, as many people in the region have not seen the multitude of tools available.  It also provided key networking in the region and access to resources for those affected and working in the field to utilize.  Finally new international friends and connections were made, some new dimensions began to open especially regarding training of parents and professionals in wheelchair seating and positioning and promotion of augmentative and alternative communication.

The success of this conference is due, in large part to the ingenious organization of EQUIPKids Executive Director and Founder, Dana Cornfield.  The Conference was aimed mainly at professionals and students in the fields of Special Education, Psychology, Language therapy and other specialties in relation with the development of the person with difficulties, as well of the ACC users and their families.  The reality, however, was a large number of parents and children with disabilities attended which added great education and hands on opportunities for learning and engaging in the region.  

It took many months for the planning and execution of this conference to be pulled off as seamlessly smooth as it was.  The organizers put countless hours into making this conference a success.   They arranged for lecture-type sessions, as well as more informal sessions, to meet the needs of participants.  The organizers were very visible throughout the conference, so that if a need arose, they were available to deal with it.  In addition to the informational workshops, four main things made this conference a success: the speakers, the networking opportunities, joy and entertainment, as well as the donation of AAC tools and resources by the Central Coast Children’s Foundation, which were presented, put on display for participants and raffled off at the end of the conference.  

The conference brought in a broad range of hi-level speakers from all over the world including those from Latin America like Gabriela Berlanga from Mexico, Claudia Marrimon from Chile, and Patricia Guitterez from Argentina as well as professionals from other continents including Deanna Wager, Linda Hodgdon, & Caroline Musselwhite from the Unite States, Sudha Kaul from India, Tamara & Rick Alred from Canada, and Keri XX from Wales, which gave a broader perspective to the conference. Paul Marshall (a man from Canada who uses AAC) gave participants a clear vision of potential and was an inspiration to many.  
 
The Conference presented much needed opportunities to network in the field and in the region.  It offered numerous opportunities for participants to get together, speakers were treated to lunch together each day and tours on the day off provided a chance to develop and build personal, professional and institutional relationships.  But just as importantly, its low cost allowed tons of parents, professionals and those affected to attend the conference and learn about the emerging developments in the field.  EQUIP Kids developed a Spanish website which allowed for ease of marketing with those in the region and were able to attract a wide range of participants who would not have been able to attend had this conference taken place in North America due to economic and linguistic barriers (Gabriela Berlanga).

Throughout the conference, small touches provided a sense of joy that made people want to be a part of it.  Examples include: the dancers after the closing ceremony, the beautiful stones (carved by the father of an EQUIPKids student) given to all speakers, the jesters during the closing ceremony, and many other events.  “The conference was a class act, and I would expect that everyone who attended it will want to come back, and to tell their colleagues (Carol Musslewhite)!”

The informational workshops and presentations allowed presenters to expose and to spread the findings of professionals and organizations in the intervention of communication, from a clinical and/or a pedagogical perspective.  It also provided tools to work with people with difficulties in the classroom (school inclusion) and in other areas (ex. At home). Topics were divided into six modules and were presented using lectures, classes, workshops, round tables, free subjects and posters. Modules included:

ACC Generalities
Evaluation
Treatment
Instruments, technology and software
Inclusion and special education
Especialidades complementarias

Each exhibitor was given 1 hour to present his or her respective products and methods as well as provide workshops, demonstrations of evaluation techniques, diagnosis or treatment, etc
Part of what made this conference such a success in the expertise of Dana Cornfield, the founder of EQIPTKids. According to Deanna Wagner and Carol Musslewhite, the secrets of Dana Cornfield (and EQUIPKids) success is her ability to motivate, inspire and engage people.   Dana clearly has a vision for what needs to happen, and somehow, on a shoestring, makes it happen.  Dana has found smart, motivated people, and trusts them to provide on-the-ground planning.  She is a very calm person, and seems not to be worrying about all of the pieces.  While she is Canadian, Dana seems to be very well accepted by people in Peru, and throughout Latin America.  Her sense of mission is clear, her communication is excellent, and her marriage to a Peruvian man underscores the permanence of her connection to the area.   While Dana has a clear sense of mission, she is not pushy – rather, she makes people truly WANT to be a part of the project.

Another prominent individual who added to the success of the conference is Deanna Wagner, a speaker and Assistive Technology Specialist with Southwest Human Development in Phoenix, Arizona.   Deanna’s success is her combination of passion and knowledge.  She is an excellent presenter in English, but she absolutely sparkles in Spanish.  There are few people on this planet with Deanna’s knowledge base, and the ability to share it directly, without need for translation. 

Gabriela Berlanga, Director of CATIC the Centre of Technology Support for Communication and Learning in Mexico City, was another key individual who added to the success of the Cuzco conference.  She gave several presentations in Spanish on various AT components, she also demonstrated the products that were donated by the Central Coast Children’s Foundation and determined the winners of the various prizes.  Her image as one of the leaders of AAC in Latin America was solidified as she was able to positively contribute to the workshops, network with key players across Latin America and her knowledge and dissemination of information about the AT products brought down to the conference was unparalled. For Gabriela, this was a conference that became much more than a chance to present, but rather an opportunity to teach care takers of children with disabilities not only what technologies are in the field, but also that they can do things without technology to develop the communication abilities of the children.

The role of the Central Coast Children’s Foundation in the conference was the procurement and donation of $10,000 worth of Assistive Technology products from companies in North America, as well as the transportation costs of sending key individuals like Gabriela, Deana and XX to the Cuzco Conference.  The impact of having such products on display (and to give away) was crucial in disseminating information on key products to augment the emerging field in Latin America. Many participants had never seen the resources and tools on display and were given a rare opportunity to understand what they could do in assisting and enriching the life of a loved one, a client or a friend.  Harvey Pressman, CCCF Founder, noted the interesting and unique way the Foundation was able to add value to a stellar conference by utilizing “long-distance assistance.”  The Foundation was looking for a way to strategically invest in Equip Kids and ensure their contributions would add real, long-term, value to the conference.  The foundation approached 11 companies producing cutting edge assistive technology tools and resources and offered to fund the display of their products in Cuzco and requested the company donate an item with a Buy 1 Get 1 Free model, with the Foundation purchasing the first product. 

The products were exhibited during the conference and presentations were made on each one highlighting their use and importance in the field.  Participants were able to examine items on display tables, ask questions and test them out.  They were also encouraged to apply for the product by writing a 50-word essay, which would be used to determine who would receive the products at the end of the conference. According to Carol, “Everyone kept coming back between sessions and breaks and asking us about the items.  They were very careful to get specific information about how to apply, and were very sincere in their requests.  They wanted to make sure they were asking for items that they understood how to use.”  The excitement and buzz around the table was tangible.  Gabriela Burlanga noted that most people had never seen this equipment.  Professionals were able to learn the characteristics of the wide range of tools and parents of children with special communication needs could try and compare how the different equipment worked for their child. 

The closing session was a beautiful encapsulation of the conference it lasted 1.5 hours, but felt much shorter.  Presentations of plaques to key people included: Carol Musslewhite, Deanna Wagner, Dana Cornfield and Gabriela Burlanga.  A slide show highlighted each company who sent down products, their focus, website and the product they donated.  Awards of the products were announced and presented by Deanna, Carol, and Gabriela.  There was also a troupe of comedians, acrobats, and actors performing which added to the joy of handing out these products to the winners. The highlight invariably was the award of the various AT products. Participants were quite visibly moved and thrilled, several recipients were misty-eyed. 

In an interview with Deanna Wagner she described the end of the conference and giving out of various AAC products, “It was so exciting … almost like no one wanted it to end.  People kept coming up to us and talking about the products and how much they will use them.  I felt so lucky to be a part of this.  We were able to touch groups of people who will serve others as well as individual families.”
   


Appendix
TASH: http://www.tash.org/index.html

25318 USB Wafer Switch
25000 USB SwitchClick or  # 25007 USB MiniClic
25010 MI-5 Mouse Interface
58500 Microlight Switch
2 Big Buddy Buttons - various colours
4 Regular Buddy Buttons - various colours and patterns

Attainment: http://www.attainmentcompany.com/xcart/home.php
Hi tech:  GoTalk 9+
Low tech: One by Four Talker, TalkBook Four, VoicePod, Personal Talker, and the Talking Photo Album.
Books: Pictures that Talk, that was designed to be used with the Talking Photo Album and to improve student social interaction skills, increase independence, and enhance communication between families and professionals who work with students with disabilities.
All devices were programmed in Spanish.
Saltillo: http://www.saltillo.com/
Chicadee
Cardinal
Chat Box (16)
Mayer/Johnson: http://www.mayer-johnson.com/
Boardmaker v5 for Windows (Spanish edition) with the 2000-2006
Addendum Libraries (hope to have v6 ready in Spanish by then)
PCS Wordless Edition  (8 1/2 x 11 size book)
PCS Guide in Spanish ( 8 1/2 x 11 size book, very thin)
Visual Strategies in Spanish (8 1/2 x 11 size book)
PECS in Spanish  (8 1/2 x 11 size book)
WordPower in Spanish (if ready)
Enabling Devices: http://enablingdevices.com/catalog
7075B - 7-Level Communicator (Black)
4200B - Big Talk (Blue)
9151 - Mini Com
782R - Gumball Switch (Red)

ACI, Inc: http://www.augcominc.com/
Social Networks
Michael Williams DVD
Collection of ACN Issues
AAC Idea Book for Talking Photo Albums
Softtouch: http://www.softtouch.com/

My Own Bookshelf software programs (to create computerized books).

Zygo: http://www.zygo-usa.com/

Talara-32

Origin: http://www.orin.com/access/
Switchy Switch Interface
Adaptivation: http://www.adaptivation.com/
AbleNet: http://www.ablenetinc.com/home.aspx