Telephone Accessibility for Individuals with Dual Sensory Impairments: A Case Study
Print edition page number(s) 43-46
Rehabilitation efforts for children with congenital dual sensory impairments, or deaf-blindness, have a long-standing history. Rehabilitation for older people with acquired dual impairments has recently moved to center stage because of the increasing number of clients who require such services (Saunders & Echt, 2007). For both these groups of clients, service delivery follows already established pathways. However, it has been our experience that a third group of rehabilitation clients, namely, those who are affected by slowly progressive and early-onset impairments, often require individually tailored unique interventions that need to remain flexible over long periods. This Practice Report describes one such process in which a client's (and the rehabilitation agency's) rehabilitation goal was to make telephone services accessible in the presence of a progressive sensory-and-motor impairment that was due to Charcot-Marie-Tooth (CMT) syndrome.
CMT syndrome is one of the most commonly inherited neurological disorders (Garcia, 1999; see also <www.charcot-marie-tooth.org>). Discovered in 1886 by three physicians, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth (Charcot & Marie, 1886; Tooth, 1886), CMT affects an estimated 2.6 million people worldwide. Symptoms usually begin in late childhood or early adulthood. The neuropathy of CMT affects both motor and sensory nerves. Persons with CMT slowly lose the use of their extremities, and some lose sensory nerve function, thereby impairing their hearing and vision. CMT is caused by mutations in genes that produce proteins that are involved in the structure and function of either the peripheral nerve axon or the myelin sheath. Consequently, these nerves slowly degenerate and lose the ability to communicate with their target cells. CMT usually does not affect life expectancy, but can cause severe disability. Even though there is no cure, physical or occupational therapy or both may be beneficial.
Access to the dossier information was approved by the Centre de recherche interdisciplinaire en réadaptation de Montréal métropolitaine, the institutional ethics review board for rehabilitation agencies in the Montreal region. The person who benefited from this specific technological collaboration is John (a pseudonym), a 59-year-old man who was diagnosed with CMT syndrome at age 16. He has a master's degree in English literature and is a passionate poet, which was also his main motivation for pursuing the use of assistive technology. At age 42, John was diagnosed with Type 1 diabetes mellitus; he used a manual wheelchair and lived independently until age 56, at which point he moved into a long-term assisted living environment. He is possibly best described with a quote from his neurologist: "He leads a remarkably full and active life."
His visual impairment began during high school, at which time he began to develop his current skills in the use of assistive technology, such as his video magnifier, +16 full view AOLITE spectacles (high-power reading glasses), and large-print computer software. John also uses a large-print watch and a large-print clock. He attempted to learn and use braille, but he was unsuccessful because of sensory-and-motor deficits in his hands that were related to both CMT and diabetes. At the time of this rehabilitation intervention, his visual status was OD acuity 20/1500 (6/420), field diameter (Octopus) 22 degrees horizontal × 25 degrees vertical; OS acuity 20/1900 (6/480), 35 degrees horizontal × 35 degrees vertical. His hearing impairment began during adolescence; he has had only perceived static noise in his left ear since age 15 and continues to experience constant binaural tinnitus. John received a cochlear implant on his left side at age 56 and on his right side at age 58, in 2010. It is unclear to what extent the vision loss is related to his Type 1 diabetes mellitus or to complications related to CMT. John started learning American Sign Language (ASL) at age 55 and now has limited but functional knowledge of ASL, due mostly to his impaired motor and visual skills. He can communicate verbally, but persons in his environment mainly communicate with him using a combination of gestures and ASL signs at close range.
The rehabilitation goal
At age 47, John received his first computer through the Régie de l'assurance maladie du Québec (RAMQ), the provincial agency responsible for the public health insurance plan. This computer was adapted with ZoomText magnification software, provided to assist in his writing poetry. At that time, John's telephone interface was a standard teletypewriter (TTY). As both his vision and hearing continued to decline, the TTY became more difficult to see, since it had only limited magnification potential. John approached our agency, and together we set out to achieve his rehabilitation goal of the independent use of telephone-based communication. Initially, the required magnification could be obtained by simply introducing a large visual display teletypewriter (LVD TTY). However, in 2006, during a reevaluation of his telephone communication skills, John stated that he was now unable to follow the text on his LVD TTY. Given his level of visual acuity and the magnification size that limited the number of letters on the screen to one at a time, this situation was not surprising. His audiologist referred him to the Services for Assistive Technology-Deaf and Hard-of-Hearing (SAT-DHH) program in our center and recommended a TTY using bigger text. While examining such magnification possibilities, we became aware of the SOFT TDD (telephone device for the deaf made by Auristar, <www.auristar.com/en>), which is a TTY-phone-computer interface. We conducted initial testing at John's home; however, the SOFT TDD software was not compatible with the TTY device. Specifically, the text display did not scroll across the screen.
At this point, John moved into a long-term care facility, which eliminated his RAMQ eligibility for some types of technological aids. However, we continued to explore alternate solutions and funding sources. The approach to achieving his rehabilitation goal required the collaboration of professionals from (then) two separate agencies: an educator specializing in hearing impairment (Paul Evers) at the Mackay Rehabilitation Centre and a vision rehabilitation therapist (Paul Barber) at the Montreal Association for the Blind (MAB). Together, we conducted the initial testing with SOFT TDD and ZoomText; the problem remained that ZoomText did not scroll the SOFT TDD text across the screen. We contacted Auristar, which informed us of their Braille Appareil de Téléphonie pour les Sourds (BATS) system and promptly sent a free evaluation copy to the Mackay Rehabilitation Centre. After more testing, this software showed promise, even though changes to the font and response speed were needed.
In December 2006, the two collaborating rehabilitation agencies merged, forming the current MAB-Mackay Rehabilitation Centre (MMRC). As a result of this merger, the Dual Sensory Impairment Program (DSIP) was created in which John is still being served. With this new team setup, we consulted with Auristar, which showed an openness to adapting the BATS to John's specific needs. In parallel, we decided to apply for the necessary funding through the RAMQ's visual aids and devices program (since BATS is adapted for John's visual needs). Our claim was supported by recommendations from the audiologist (confirmation of level of auditory impairment and need and suitability for technological communication assistance), the vision rehabilitation therapist (confirmation of the level of visual impairment and its magnification requirements), and the SAT-DHH educator (explanation and recommendation of the technology involved). The funding request was submitted in September 2007, funding was granted by RAMQ in November, and the equipment was issued in January 2008 while Auristar completed its changes to the software. Once the equipment had arrived at the MMRC, a first evaluation with the client was conducted on site, in case minor changes would be required. Once the setup (see Figure 1) was delivered and installed at John's residence, an occupational therapist from the residence completed an evaluation of John's workstation to ensure ergonomic suitability, and training was provided on site by an educator from the DSIP. The resulting recommendation of a large-print keyboard was supported financially by RAMQ. Both the MMRC and John reached his rehabilitation goal: He is now capable of accessing telephone-based communication without the assistance of others.
In retrospect, this rehabilitation process was greatly facilitated by the merger of the MAB and the Mackay Rehabilitation Centre during the period in which the service was provided. When hearing-and-vision rehabilitation are offered by the same agency, both the client's convenience and the coordination of services are much more likely to be accomplished (Brabyn, Schneck, Haegerstrom-Portnoy, & Lott, 2007). The largest internal obstacles and delays were related to changes in staff over time. Unfortunately, rehabilitation agencies have little control over such factors. In terms of external financial support, the resources within the Qu|febec health care system were accessed in a new and creative way whereby a hearing assistive device was subsidized through the visual aids and devices program via a special consideration request. The main advantage of this assistive technology approach is that John's magnification requirements can now easily be adjusted over time, given the flexibility of the visual computer output on the computer screen. This flexibility is especially useful for clients with slow progressive or unstable impairments. There is currently an alternative available for communication with individuals who are deaf through a free video and telephone service provided by NexTalk (www.nextalk.net). Even though this service could use the magnification possibilities of computer screens, a client needs to be proficient in ASL. This requirement may limit the utility for persons like John or those who acquire dual sensory impairments later in life.
Brabyn, J., Schneck, M. E., Haegerstrom-Portnoy, G., & Lott, L. A. (2007). Dual sensory loss: Overview of problems, visual assessment, and rehabilitation. Trends in Amplification, 11, 219-226.
Charcot, J.-M., & Marie, P. (1886). Sur une forme particulière d'atrophie musculaire progressive, souvent familiale débutant par les pieds et les jambes et atteignant plus tard les mains [On a particular type of progressive muscular atrophy, often family-related, beginning with the feet and legs and later affecting the hands]. Revue médicale, 6, 97-138.
Garcia, C. A. (1999). A clinical review of Charcot-Marie-Tooth. Annals of the New York Academy of Sciences, 883, 69-76.
Saunders, G., & Echt, K. (2007). An overview of dual sensory impairment in older adults: Perspectives for rehabilitation. Trends in Amplification, 11, 243-258.
Tooth, H. H. (1886). The peroneal type of progressive muscular atrophy. Unpublished dissertation, London.
Paul Evers, educator, MAB-Mackay Rehabilitation Centre, 3500 boulevard Decarie, Montréal, Québec, Canada H4A 3J5; e-mail: <firstname.lastname@example.org>. Paul Barber, M.A., vision rehabilitation therapist, MAB-Mackay Rehabilitation Centre, 7000 Sherbrooke Street West, Montréal, Québec, Canada H4B 1R3; e-mail: <email@example.com>. Walter Wittich, Ph.D., postdoctoral fellow, Centre de recherche institut universitaire de gériatrie de Montréal, University of Montreal, Centre de recherche interdisciplinaire en réadaptation (CRIR) du Montréal métropolitain, Research Coordinator, MAB-Mackay Rehabilitation Centre, Montréal, Québec, Canada; e-mail: <firstname.lastname@example.org>.
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