Assisting adults with acquired deafblindness to keep in touch As the number of old people increases, so does the number of people who are deafblind. The term deafblind refers to those people who have a significant vision and hearing loss. The majority of people who are deafblind have some residual vision and /or hearing. While considerable research has been done in the area of congenital deafblindness and the education of children who are deafblind, less has been done in the area of acquired or adventitious deafblindness. In reviewing the literature and speaking with those who work in the field of dual sensory impairment and ageing, it becomes evident that older adults who are in fact deafblind are rarely considered deafblind. Also, those working in the area often do not consider themselves to be working in the field of deafblindness, therefore potentially limiting their access to a body of knowledge and their clients from additional appropriate support services. Literature on all forms of deafblindness invariably addresses communication issues to some extent as, regardless of etiology, the need for assistance with communication is a defining characteristic of deafblindness (Miles, 1996). This paper will examine some of the literature in the area of acquired deafblindness, or dual sensory loss with regard to communication issues. This topic is of importance for a number of reasons. As mentioned, an ageing population results in increased numbers of people with acquired vision and hearing losses and often both. This increase in numbers of older people who are deafblind, means that service providers need a greater understanding of the complex issues and effects which a dual sensory impairment has on all aspects of an individual's life, as well as strategies and methods for working with them. Looking at the ageing population who have a dual sensory impairment also provides us with information for working with the even smaller population of younger adults with acquired deafblindness. The ability to communicate effectively is invariably compromised by a dual sensory loss, and so is a particularly important area for consideration, as communicative ability impacts on independence, self esteem, and more generally, quality of life. As families and carers of older people are often primary communication partners, that is people the older person interacts with most frequently, this group is important in terms of providing information about the issues around communicating with older people who are deafblind. There are many models of human communication. This paper will consider communication simply in terms of it being the sending and receiving of messages between two or more people using codes known to those involved in the interaction. The primary area in which communication tends to break down with older adults who have acquired deafblindness is the ability of the receiver (the person who is deafblind) to receive the message. The person who is deafblind may not have adequate hearing to receive a complete spoken message auditorily, and may not have enough residual vision to detect sound patterns formed by the mouth or facial expression. Those people who have acquired deafblindness and have learnt an alternative non oral/aural code such as tactile fingerspelling (a manual representation of each letter of the alphabet formed on the person who is deafblind's hand) appear to experience fewer communication breakdowns. As mentioned earlier, much of the research into deafblindness and communication has been done with children and early communication and education needs. While some literature addressing the communication issues of older people who have acquired deafblindness exists, most of this examines aural rehabilitation issues and practices rather than interventions involving tactile communication methods. A number of authors list different forms of tactile communication and factors to consider when choosing a tactile communication option (Cumpston Bird, 1994 and Grassick, 1998) but do not offer a clear decision making process, or outline case studies highlighting the complexity of the decision making process. Certainly the population of people with acquired deafblindness is quite small and yet tactile communication methods have sometimes been found to be useful with this population despite the lack of supporting literature. The following literature review provides an overview of the type of work which has been done with older deafblind people to date. Carabellese, Appollonio and Rozzini et. al. (1993) aimed to determine the association between quality of life measures and sensory impairment in aged individuals living at home. They surveyed 1,191 non-institutionalized elders aged between 70 and 75 in a town in Northern Italy. They found that single sensory impairments were significantly and independently associated with increased risk for depression and decreased self sufficiency in daily living activities. They emphasized the importance of routinely checking vision and hearing in the elderly population and reported that the use of hearing aids improved quality of life. In his paper given at The International Conference on Low Vision 1990, Osborn presents a review of the first 140 clients seen for full audiological assessment at an audiological test facility established in May 1989 at the Association for the Blind, Victoria. 91% of those seen were aged over sixty and Osborn's paper focuses on this group, which had an age range of 62 to 97. The causes of vision and hearing losses in the group were typically age related conditions and the group on average experienced a moderately severe hearing loss resulting in impaired speech perception. Only 9 out of 128 elderly clients had hearing which was functionally adequate to perceive speech without amplification. Osborn points out that traditional aural rehabilitation has focused on using visual cues to compensate for hearing impairment which is inappropriate for a deafblind population, and concludes by stating "the future development of a wide range of approaches to rehabilitation for these clients remains a priority for research in this field". Osborn's (1992) article outlines the rationale for an aural rehabilitation clinic in a service for people who are vision impaired, describes the services provided, and discusses some of the communication issues arising from a combined vision and hearing loss. Osborn (1992) stresses the importance of early diagnosis of hearing impairment and the fitting of appropriate amplification, as well as trialling a range of assistive listening devices. He also emphasizes the importance of training staff working with deafblind adults in communication skills. Osborn (1992) concludes by stating the need for research in order to develop effective rehabilitation for older people with vision and hearing impairments. Osborne and Myers' (1993) paper described the short and long term benefits of providing audiology and aural rehabilitation service to the high percentage of hearing impaired people within the elderly vision impaired population. These benefits include the provision of appropriate acoustic environments in the clinical rooms and ensuring that clients have suitable amplification available during their interviews and assessments. Other advantages include improved communication following provision of hearing aids, supplementary listening devices and appropriate training. Bagley's (1989) booklet Identifying vision and hearing problems among older persons: Strategies and resources, focuses on the early detection of vision and hearing losses and prevention of additional loss. It also outlines services available to older people with vision and hearing impairments such as training in orientation and mobility, daily living skills and communication techniques as well as counseling, provision of information and referrals. The purpose of Bagley's (1991) paper, is "to identify innovative educational and service delivery programs, strategies for coordination of rehabilitation and aging services, research initiatives and program planning techniques that can be utilized to strengthen service programs for older Americans with sensory losses". The paper outlines the services and facilities available for people with sensory losses in America and concludes by stating that those providing services to the aged need to learn to recognize dual sensory losses and their effects, adapt coping strategies that are heavily dependent on one sense and assist individuals to maximize use of residual senses, as well as developing alternative techniques such as tactile communication. In the concluding discussion of the 1990 International Symposium on Ageing and Sensory Loss, chaired by Hal Kendig, action priorities were listed under the headings; service strategies, education and training, information dissemination, community access/consumer rights and research. Of relevance to the topic of communication with family members and carers were the action priorities; agencies need to respond to consumer needs, service delivery needs to be holistic, education and training among family members and care givers is needed, and research is needed into the consequences of impairment and which services work best. From this literature review it becomes apparent that while work is being done to alleviate the adverse effects of deafblindness on communication in the clinical or service delivery setting, considerably less is being done in the home with primary communication partners. There appears to be a lack of knowledge of the effects of working collaboratively with the older person who is deafblind and their primary communication partners in a natural setting. Also, a number of authors mention the importance of early detection of vision and hearing loss and the importance of the provision of adaptive equipment which considerably improve the individual's abilities in the clinical setting, but there is little evidence of functional communication assessments with familiar people in familiar environments. Many authors also emphasize the increasing likelihood of vision and hearing loss with increased age, highlighting the need for research in this area. Much of the information in this area currently is anecdotal and there is a complete lack of literature on training strategies other than traditional aural rehabilitation, highlighting the need for research in the area of tactile communication options. The following decision making checklist for tactile communication options has evolved over a four year period after working with a number of adults who have acquired deafblindness. The process begins by meeting the individual in their home usually with one or more family members and / or carers. Discussion begins by taking a case history. Much information can be gained at this time about how the individual interacts with their most significant communication partners in a typical environment. Things to note include: - the individuals positioning in the room - If any adaptive hearing devices are used - how communication breakdowns are repaired - if some family members are heard more easily than others - what environmental sounds are present More formally, case history information which is needed is: -vision condition (is it progressive?), age at onset, current vision - hearing condition (is it progressive?), age at onset, current hearing - other disabilities (eg. epilepsy, diabetes, physical and/or cognitive disabilities) This information will impact on possible communication options available to the individual. - other service providers (eg. Orientation and Mobility, Audiology, Orthoptics, Medical, Occupational Therapy) It is important to know what other services are currently being provided and have been provided in the past as all can have a beneficial role and may not yet have been considered. Other service providers can also be an excellent source of information and assist in supporting any communication program implemented. - communication partners / situations This is important to know as different communication methods will invariably be used in different situations with different people. Abilities of communication partners must also be taken into consideration. Cognitive, physical and sensory impairments in either communication partner all impact on communication. - how is the individual currently communicating via telecommunication? If the person currently has no means of telecommunication it is important to investigate options for them as this greatly enhances independence. Options for telecommunication are: amplification devices for the telephone TTY (telephone typewriter) large print TTY telebrailler fax modem and computer with screen enlarger, voice output or braille display - what are the individuals and the families / carers main concerns? It is important to address these concerns prior to implementing a communication program. If communication is not a primary concern, even if it is an issue, it is unlikely that the family will be motivated to learn any new method for communication. The following is the checklist which has been used for making decisions about communication options. Vision - adequate for print? Adequate for sign? Hearing - Moderate hearing impairment? Severe hearing impairment? Profound deafness? Disabilities - Do these preclude manual print or tactile sign? Partners - Do communication partners have the skills for alternative method of communication Motivation - Are the individual and their family members motivated to learn an alternative method of communication? Based on the answers to these questions a number of the following communication methods may be offered as communication options. * Adaptive hearing devices * Print * Print on palm * Deafblind fingerspelling and shortcuts * Sign language * Tactile sign language Once the decision has been made the chosen method of communication is taught to the person with deafblindness and as many primary and secondary communication partners as possible. Once taught, the method is trialed and reviewed at generally six month intervals. The ongoing review process is an essential part of this model. If an individual's communication partners, situations and/ or vision and hearing change, so may their most appropriate and effective method of communication. This model can be used for each communication situation the person with deafblindness is involved in. It is likely that communication methods will vary from situation to situation due to the number of factors impacting on each situation. In particular, the communication partners' skills and motivation to learn and use a new communication method will vary from situation to situation. I have a particular preference for teaching people with acquired deafblindness and their families deafblind fingerspelling with shortcuts. Cumpston Bird (1994), states that "spelling out each English word letter by letter can be time consuming and tedious for both the sender and receiver of the message". However, with the introduction of shortcut signs and use of more telegraphic expression, the time consuming nature of fingerspelling can be overcome to some extent. Advantages of deafblind fingerspelling with shortcuts over sign language and speech amplification devices are: * quick and easy for person with deafblindness and communication partners to learn * tactile nature of deafblind fingerspelling reduces possibility of misunderstanding due to not seeing signs or hearing words accurately * shortcut signs relevant to the individual can be created to increase speed of communication * can continue to be used if the person's vision and hearing deteriorate * useful supplement to lip reading * good alternative in noisy environments Important things to consider when teaching deafblind fingerspelling are: * positioning - it is important to reinforce the importance of positioning to those who are being taught as both sender and receiver can become very uncomfortable if a good position is not established at the outset of communication. Neither the sender nor receiver should need to stretch or twist to shape or receive any letter formation or shortcut. * encourage the use of telegraphic expression to reduce communication time - that is, using as few words as possible without losing meaning. Smaller words such as "is" and "a" may be omitted * teach only shortcuts for words which are used frequently with the particular individual * document and preferably photograph an individual's repertoire of shortcuts * encourage as many primary and secondary communication partners as possible to learn and use deafblind fingerspelling with the person with acquired deafblindness Case Study Case History Peter is a 64 year old man living with his wife in a small rural town. He had been given a copy of the deafblind manual alphabet which he had taught himself although no other family members had learnt it. Peter reported being keen to learn sign language. While listening to speech is difficult and tiring for Peter, in quiet conditions he manages quite well which limits his families motivation to learn and use alternative methods of communication. Vision Information - bilateral corneal scars and left ambliopia, vision adequate to read large print with some difficulty Hearing Information - Meniers disease resulting in moderate - severe hearing impairment in right ear. Profound hearing impairment in left ear resulting from surgery on lymph gland. Other disabilities - taking medication for depression Services Involved - audiology case management (vision impairment agency) medical intervention for depression Communication partners situations Primary - Maureen (wife) who has reduced memory since removal of brain tumour Sarah (daughter) Joel (grandson) members of bowling club Secondary - doctor other health professionals Tertiary - shop assistants Telecommunication - Peter has an amplification device for the telephone but is reluctant to speak with people on the telephone as he still finds it quite difficult to hear them. Concerns - Peter not hearing parts of group conversation The need for Orientation and Mobility Peter's depression and isolation Decision making process The family were keen to trial an adaptive listening device for group conversations. I also suggested deafblind fingerspelling with shortcuts as the best option for the following reasons: * useful to supplement speech if Peter is missing particular words * useful in noisy situations * good to have learnt the skills if Peter's senses deteriorate further * quicker and easier to learn than sign language Teaching communication method Shortcuts which would be useful for Peter were created. A short session was spent with Peter, Maureen and Sarah going over the alphabet , spelling out words and practicing the shortcuts. A video was made with the deafblind alphabet and all the shortcuts taught. Review Peter and Maureen were contacted monthly by telephone to support and encourage their use of deafblind fingerspelling. Upon a six month review it was found that the family had not been using deafblind fingerspelling or shortcuts, but had found the adaptive listening device useful, particularly in the car. Peter, Sarah and Joel had attended a few sign language classes and Peter and Joel had enjoyed practicing together. The fact that Peter lives three hours from the service provider makes regular face to face contact impractical. On reflection, it was felt that more regular frequent face to face practice and reinforcement of the families deafblind fingerspelling and shortcut skills may have increased their use of this communication method. Next steps * Monitor Peter's situation with regard to vision, hearing and communication partners. * Investigate teaching members of Peter's bowling club deafblind fingerspelling. * Investigate the possibility of a volunteer to practice deafblind fingerspelling and shortcuts with Peter and provide social contact. With increasing numbers of people with acquired deafblindness comes the need for service providers to have an understanding of the complex issues facing this population. It is hoped that this paper has given some insight into a possible service delivery model with regard to acquired deafblindness and communication. There remains a need for further discussion and research into communication options and best practice in relation to this area. Meredith Prain Speech Pathologist The Deaf-Blind Association (Victoria) REFERENCES Bagley, M. (1989). Identifying vision and hearing problems among older persons: Strategies and resources. Helen Keller National Center for Deaf-Blind youths and adults. Bagley, M. (1991). Sensory changes and aging: The Australian response to age-related hearing and vision losses. World Rehabilitation Fund, Inc. The University of New hampshire International exchange of experts and information in rehabilitation. Carabellese, C., Appollonio, I., Rozzini, R., Bianchetti, A., Frisoni, G. B., Frattola, L. and Trabucchi, M. (1993). Sensory Impairment and quality of life in a community elderly population, Journal of the American Geriatrics Society, 41, (pp. 401-407). Cumpston Bird, T. (1994). Manual Communication Options for people who have Deaf/Blindness, Vision/Hearing Impairments. A position paper prepared for the Deaf - Blind services interagency meeting. Grassick, S.B., (1997). "Short - cuts" - Adapted signs and abbreviations for tactile fingerspellers. Grassick, S.B., (1998). Communication Methods for people who are Deafblind.Paper presented at the Australian Deaf Blind Council National Conference in Melbourne. Kendig, H. (chair), (1990). Developments in services, research and innovations. The proceedings of a two day international symposium on ageing and sensory loss. Miles, B. (1996). Overview on Deaf-Blindness. DB-Link, The national information clearinghouse on children who are Deaf-Blind. Osborn, R. (1990). The value of assessing and understanding functional aspects of hearing loss in older visually impaired adults. In A. W. Johnston and M. Lawrence, (Eds.) Low Vision Ahead 2, Conference proceedings, The International Conference on Low Vision. Osborn, R. (1992). A program to address the communication needs of older adults with vision and hearing loss. Hearing Review, 8.2, (pp. 10-11) Osborn, R. and Myers, C. (1993). Benefits to clients arising from the provision of audiology services within the low vision clinic. The proceedings of the international conference on low vision, Groningen, The Netherlands.