Setting up AAC Services in Emerging AAC Areas.

by Prue Fuller, Caroline Gray,  and Anne Warrick

Introduction

The past three decades have witnessed the development and growth of a new specialty within the fields of education, speech-language pathology and rehabilitation medicine: augmentative and alternative communication, or AAC. AAC services can quite literally transform the world of a person with severe speech and communication difficulties. Yet, in many countries there is little or no understanding of this promising new field among the general population or local medical professionals, special educators, speech-language therapists and other professionals who work with people who have disabilities that result in complex communication needs (CCN).

Even where AAC services have emerged in one area of a country, they may be available only in a single school or urban hospital that is trying to serve a large population usually with very limited resources. A recent survey of developing countries listed many key barriers to AAC services:

·     A lack of awareness of AAC

·     A lack of information about AAC

·     A lack of skilled professionals as service providers

·     Unknown access to skilled professional mentors

·     Limited AAC services

·     Limited training available for professionals, family members and people who can benefit from AAC services

·     Limited or no access to AAC materials and technologies

·     Limited funding for services and/or AAC materials and technologies

·     Limited access to linguistically/culturally appropriate materials/technologies

·     Unknown attitudes toward, and acceptance of, people with disabilities

Individuals who try to develop AAC resources and services in emerging areas often are faced with a daunting task. How to get started? How to get around all these barriers? How to establish a “beachhead” and then to “scale up” in size and strength? How to benefit from the experiences of people in other regions who have faced the same kinds of questions? How to find, gain support and work with others so time is not wasted “reinventing the wheel.”

To initiate some thoughtful discussion about these issues, we asked two of the authors, Prue Fuller and Caroline Gray, people who have served as external resources and supported several “bootstrap” efforts in the recent past, to put down on paper some of the kinds of questions and issues that need to be addressed to advance AAC in an area or region. Their ideas are not intended to provide any kind of formal roadmap or manual, but simply to provide “food for thought” to people who are trying to establish AAC resources and services in emerging areas. They include some questions to consider when preparing for and initiating action. Most importantly they recognize that each situation is different and that AAC services always exist within a unique political, economic, social and cultural climate.

Preparing for Action

Considering answers to the findings specified in the introduction to this article may help identify both opportunities and obstacles to the development of AAC services for people with complex communication needs (CCN) in an area/region/country. It is known that AAC services have emerged from different implementation models, such as dedicated individuals primarily working alone to set up AAC in a particular classrooms. Others have been able to find support in setting up AAC services from like-minded colleagues. In addition, some individuals have been assisted and advised by experienced AAC mentors from within and outside their own country. Consideration and discussion of the following questions applies to anyone interested in promoting a new AAC programme, since shared ideas and thoughts clarify situations that may impact new AAC developments.   

Questions about the area/country:

·     How aware are people in the area/country about disability issues in general?

·     What is the level of acceptance of people with disabilities?

·     What are prevailing attitudes about disability?

·     What formal structures (religious, cultural, political) exist that may impact efforts to develop services for people with CCN in the area/country?

·     What facilities currently exist for people with disabilities? What groups do they target?

·     Which educational, health and community organizations already work together in the best interests of citizens?

·     What educational opportunities are available for children and youth with disabilities?

·     Do services for adults with disabilities exist? What groups do they address? What agencies address the needs of adults with CCN?

·     Is there any effort to bridge the services available for children and for adults with disabilities?

·     Is there a divide between the educational and healthcare systems in the area/ country? Between educational systems and the home?

·     What is the general degree of awareness and knowledge about AAC in the area/country?

·     What is the attitude to AAC in the area/country?

Questions about

·     Who is interested, or might be interested in AAC within the country/area?

o     People who use AAC themselves? These are the most important individuals. However, by the very nature of people needing AAC, those able to campaign are not always a large group initially.

o     Parents, other family members, personal assistants? an important group in many countries. Historically parents have started many facilities for children with disabilities. Many of these centres have included AAC services.

o     Professional assistants/aides? Classroom assistants, respite care staff, nurses aides, nannies, etc.

o     Professionals? Teachers, speech and language therapists, doctors, psychologists, occupational therapists, physiotherapists, researchers, pedagologists, social workers, clinical engineers, manufacturers of assistive technology.

o     Organizations or listservs for people who rely on AAC?

Augmentative Communication On-line Users Group (ACOLUG), Speaking Differently, Pittsburgh Employment Conference (PEC).

International listservs often available within countries and via the International Society for Augmentative and Alternative Communication (ISAAC).

o     Administrators of schools, hospitals, clinics, etc.? Leaders of organizations can make a big difference to how quickly and effectively AAC is introduced within settings.

o     Manufacturers of communication and writing aids? With a small market and high development costs the products of all manufacturers require consideration.

o     Policy makers or interested parties with expertise? Government officials and community advocates require information about AAC and the people who can benefit from it if they are to offer effective support.

o     University faculty members? Professors and lecturers need to introduce AAC to their curriculum to prepare the next generation of AAC professionals.

o     Community leaders? Individuals who may help and/or advise on fundraising, governmental liaison, legal issues etc.

o     International organizations? The International Society for Augmentative and Alternative Communication (ISAAC) and ISAAC Chapters around the world; Central Coast Children’s Foundation (CCCF).

·     How much time can individuals in each group realistically give to a project to increase AAC services? Within an emerging service ‘leaders’ may need to delegate appropriate tasks to volunteers, advisers etc in order to maintain their own focus on AAC. 

Questions about AAC facilities:

·     Who will the AAC facility serve? Children? Adults? People with developmental disabilities? Acquired disabilities?

·     Which disability groups will be served? Cerebral palsy, developmental delay, stroke, head Injury, autism, motor neuron disease, syndromes?

·      What are AAC service needs for rural populations?

·     What are AAC service needs for urban populations?  

·     What are staffing needs in rural areas?

·     What are the staffing needs in urban areas?

·     What support facilities already exist?

o     Special schools?

o     Charities?

o     Health clinics, hospitals?

o     Community Based Rehabilitation (CBR) Centers?

o     Local facilities, like residential homes?

o     Community centers and Clubs e.g. Boy/Girl scouts, Boy/girl clubs?

o     Day care programs?

Questions about AAC interventions:

·     What indigenous AAC related services currently exist?

o     Does the deaf community have their own signing system? Are gestures or other signing systems available?

o     Are picture-based systems available? If so, which systems are being used?

o     Is any assistive technology available?

o     Are physical supports provided e.g. wheelchairs, special seats, walkers.

·     How are AAC services and resources going to be funded?

o     Are services for speech therapists, occupational therapists, physiotherapists, teachers paid? By whom?

o     Is any type of assisted technology funded? By whom?

o     Is fundraising support available?

o     Do stakeholders know how to get help from foundations, international granting agencies, etc?

o     Do stakeholders know where to obtain help in writing funding proposals?

·     Who will be involved in AAC service start-up?

o     Professionals?

o     Assistants?

o     Volunteers?

o     Parents?

o     Advisors?

·     Where will the service be located?

Developing a team

Experience around the world has shown the benefits of a team approach when supporting individuals with CCN. Teams can be made up of the individual, his/her family and professionals from health, education, engineering and social services areas, in fact, anyone who would like to volunteer their help.  Working on a team can have great benefits. It will take time to establish trust and confidence among team members and it is important to find the time to get together to have a strong, patient team leader.  He or she is the most important.

·     Is the child or adult who relies on AAC a member of the team?

He or she is the most important member and should always contribute to any team according to their ability to do so.

·     Do parents and family members play a major role on the team?

Family members, friends and caregivers usually know the person needing AAC better than anyone else and are excellent team members. For example, communication boards made by the parent and teacher together will contain vocabulary that a child can use both at school and at home.

·     Are team meetings centered on the needs of the individual? Team members need to focus on the individuals’ strengths and communication needs when developing their AAC goals for home, school, work and in the community.

·     Do team members keep each other informed about issues that affect AAC intervention? This is an important requisite in team building. For example; if a teacher spends time making a communication display to fit onto a child’s wheelchair without knowing that the child is going to have a new chair provided by the hospital, time and money are lost.

Initiating Action

There are no hard and fast rules to follow when setting up an AAC service in an emerging country. No country and nobody gets everything right. There is plenty of scope for learning from and with each other.  AAC services have been started by a single individual, a group of individuals, agencies, academic institutions and international organizations. Each model has had its challenges but the rewards repay all efforts in that ultimately people requiring AAC can communicate. Along the way associations are formed, technology has developed, professionals are now trained and research and development moves forward. Worldwide and within diverse cultures the area of AAC has emerged. So, where to begin?

Awareness raising

·     Are there relevant ministries/corporations/industry/professional groups/family members that can be introduced to AAC to build a knowledge base, gain acceptance and obtain funding for AAC services?

·     Are there technical universities/colleges/publishers/manufacturers that can help encourage development of presently available AAC/AT equipment and materials in a country? Are there people knowledgeable enough to make repairs?

·     Are there technical universities/colleges/publishers/manufacturers that can help encourage development AAC/AT equipment and materials that will be culturally appropriate and affordable in emerging countries?

·     Are there repair and maintenance facilities available once assistive equipment becomes available?

·     Are there universities, clinics, professionals, family members who can offer professional training in AAC and how to use AAC technologies and materials?

·     Are their ways to change negative attitudes about people with disabilities in the country/area?

o     Invite people using AAC, wheelchair users etc. to the area/country.

o     Show videos of people who use AAC. Translate into the languages of area/region/country.

o     Obtain national television coverage, interviews, etc.

o     Institute an AAC awareness raising week.

o     Organize projects such as bake sales, festivals, pot luck dinners, etc. that include people who rely on AAC. 

o     Develop a link with international organizations (ISAAC) or Centres of Excellence (ACE Centre, Bridge School)

o     Introduce role models (people using AAC effectively) so that people understand the power of AAC.

Summary

AAC is on the move. There are many emerging programs throughout the world; from Mexico to Malaysia, Peru to Belarus to mention just a few. Through organizations, web sites and even by “snail mail,” friends, colleagues and individuals who rely on AAC are working together to further the introduction of strategies, techniques and AAC technologies so people everywhere can communicate, participate and realize their unique dreams and aspirations.