Speaking Differently
An Organization for Persons with Disabilities
who Communicate in Different Ways

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Education of Service Providers who Deal with Persons who Communicate Using AAC

A Speaking Differently Position Paper

 

The following members of Speaking Differently (SD) participated in discussions on the education of service providers who deal with persons who use AAC in September and November, 2002: A. Abbott, V. Abbott, T. Diamanti, P. Marshall, N. Christie, B. O'Keefe, U. May, J. Casella, C.Robitaille-Brown, N. Wright

 

Introduction

Persons who are non-speaking or unable to communicate using speech in at least some situations that are important to them use different ways of communicating. For example, they may use communication boards or electronic voice output communication aids in at least some situations as part of their communications systems. It is common to refer to such individuals as "AAC users", meaning users of augmentative and alternative communication approaches. These persons "speak differently".

Persons who use augmentative and alternative communication (AAC) and those who communicate with them have long been concerned about problems related to communicating with the service providers with whom they interact. Their greatest concern is the tendency for persons such as doctors or government employees to ignore persons with little or no speech in favour of their attendants or facilitators during examinations, treatment, meetings and other interactions.

Consider this true story of an AAC user who was admitted to hospital. The hospital staff wanted to insert a feeding tube into her stomach. The woman was able to communicate her refusal. Her decision, however, was not respected. Instead, hospital personnel overrode her wishes and inserted the tube anyway. It is highly unlikely that this would have happened had the woman been a speaking person. Discussion participants who are AAC users expressed the belief that this situation resulted from the hospital staff’s lack of respect for people with communication difficulties - from their assumption that if a person cannot speak that person cannot be intelligent enough to make their his or her own decision.

Another AAC user related his experience of being asked to leave an electronics shop because his appearance "upset the other shoppers". All persons with SSPI and their family members can relate such experiences and many of them.

 

The Bases of the Problem

Some AAC users in the discussion groups expressed the belief that people in general simply do not care and that this attitude extends to service providers. Individuals who are able to speak expressed very different experiences, however, in hospitals, shops and elsewhere. They found those treating them caring and respectful so it appears the problem is related to communication barriers.

AAC users understand that many service providers are simply unfamiliar with severe communication disorders and are therefore anxious about dealing with persons who use AAC. In many ways, improvement in the situation relates to an increase in awareness of service providers who interact with users of AAC. With experience comes the loss of fear. The key is to provide AAC experience to service providers.

It is important to note that a large proportion of those individuals who use AAC have some cognitive limitations. But service providers must understand that the cognitive level of the user is irrelevant. At the very least, the respect owed every human being must be given and the basic rules of polite conduct should be followed.

Users and facilitators agreed that the issue is not simply to train the health care service providers to be better "listeners" and more understanding of persons with severe speech and physical impairments (SSPI) but also to train AAC users to become more assertive, to get the right tools.

Those service providers who do generally receive training in communicating with persons who use AAC often do not deal with SSPI individuals directly. Instead, they often act more as the supervisors of direct-care workers (e.g., technicians, attendants) who are involved in direct care. Their AAC training is rarely passed down to the direct care workers.

For the most part, those physicians, police, lawyers, accountants, etc. who have any training have obtained training in communicating with AAC users because they sought it out, not because it was part of their professional training or a requirement for licensing or professional registration. The suggestion was adopted that SD have as a priority the convincing of government, professional organizations, professional colleges, trade unions and the public-at-large that training in dealing with persons who use AAC not only should be done but must be done.

It was noted that there are medical specialists to specialize, for example, in children and in older adults. Would it not be appropriate for physicians who specialize in persons with severe physical and/or cognitive disabilities? Such doctors should be compensated for the extra time it takes to interact with this population. Wouldn't large retail operations benefit from employees trained to deal with this population, as well? The same applies across many professions and trades.

 

Attendants: The Front Line

Although problems related to attendants is considered a separate priority issue by SD executive councillors, much of the discussion turned to problems with attendant interactions. Though attendants might not be considered "professionals", members stated that persons who work with AAC users should not have to be labelled as a professional in order to receive training in AAC. Certainly, attendants rarely receive any specific training in how to communicate with persons who use AAC but their supervisors (especially those employed by government agencies) sometimes do. But is this training passed down to the attendants themselves? It is not unreasonable for attendants to receive such training. Woodwills Outreach, for example, has a policy that attendants must be trained in AAC.

Perhaps, however, attendants per se are not the issue. The issue may be the management in charge of hiring and orientating the attendants. Likely this is the group to target. One participant added that attendants "need education in common sense as much as in AAC communication".

 

 Recommendations

·       Work toward reducing the tendency for service providers to ignore persons with little or no speech in favor of their attendants or facilitators during interactions. For example, teach the police to deal with persons with little or no speech. Whether encountered in formal situations (such as court) or on the streets, police need to recognize differences between persons with little or no speech and persons who are, as an example, intoxicated.

·       Advocate for teaching service providers to communicate with people who use AAC during their professional training. This need not be extensive. Often one presentation along with the opportunity to actually meet and interact with a person who uses AAC can be of enormous value. For example, medical universities might be lobbied to emphasize the need for including an AAC component in the curriculum. It is recognized that this has been an ongoing aim of communication disorders programs in universities for many years and it has proven very difficult to convince the medical schools to make such classes mandatory. Other interesting approaches include video documentation of service providers actually using AAC devices for a day, making note of all the challenges they face and  “Day in the Life” programs that offer the opportunity to spend half a day as an AAC user.

·       Make available to AAC users and their facilitators web-based, video and hard copy training kits to help them succeed when dealing with health, legal, government and other service providers. Clinicians can quickly and effectively make such kits individually tailored to their AAC clients if a quality template is made available.

·       Information kits for service providers would also be helpful. They would explain some basic tools for effective communication with AAC users. They could be dropped into the SD website. Even better, they could be made available as PDA downloads so that service providers could access useful information while with the AAC user.

·       AAC users should have information kits made by their clinician that they can provide to their service providers.

·       Consider encouraging AAC users to use higher-level communication aids such as computer notebooks and/or standalone voice output communication aids. The use of such aids, fairly or unfairly, tends to give an impression of sophistication that yields a greater degree of respect from service providers than low-tech aids such as communication boards.

·       A marketing campaign aimed at the public-at-large would be useful. A major problem in teaching the public about AAC communication aids is that most people have anxiety regarding computers and technology in general. Funding should be sought that would enable organizations such as SD to address these issues publicly.

Creative ideas might also include more sensational approaches to public awareness such as a Disabled Pride Parade, recognizing that such approaches require the involvement of many disability groups to raise the money needed and do the considerable amount of work required. Again, realities must be recognized such as the opposition that some persons with disabilities have to such activities based on the belief that they only serve to highlight the differences between the disabled and non-disabled communities rather that demonstrate their similarities.

·       Special attention should be given to the most important of the front line workers, attendant care personnel. The first step: Ensure that the training agencies who supply the attendants provide specific training in how to communicate with persons who use AAC, that is, is "speak differently".

 

Feedback

          SD invites your comments on this document. Your opinions will be posted on the SD web site (http://pages.istar.ca/~marshall/Speaking_Differently) and/or published in Loud 'N Clear. Email your comments to u.may@utoronto.ca or mail them to the address below.

 

Prepared by Dr. Bern O'Keefe, Professional Advisor, Speaking Differently

 


Speaking Differently

Rehabilitation Sciences Building

University of Toronto

C/o Department of Speech-Language Pathology

500 University Avenue

Toronto, ON M5G 1V7