Duration of AAC technology use by persons with ALS.(augmentative and alternative communication )(amyotrophic lateral sclerosis )

The purposes of this research report are (1) to document the duration of augmentative and alternative communication (AAC) technology use by 45 persons with amyotrophic lateral sclerosis (ALS), 7 of whom were still living (with mechanical ventilation) and continue to use the technology; (2) to identify factors that might influence duration of AAC technology use; and (3) to report the AAC technology donation trends of families after persons with ALS are no longer living. The duration of AAC use varied considerably across participants; however, the mean duration was 28.4 months for all participants, 25 months for persons with primary bulbar ALS, and 34.2 months for those with spinal ALS. Review of the data reveals that invasive ventilation and timeliness of referral for AAC assessment have a greater impact on duration of AAC use than ALS type. Of those with ALS who were no longer living, 60% of their families had donated AAC devices to an AAC loan program or to another person with ALS, 32% retained the device, and 8% returned loaner devices to the equipment lending program that had originally provided the device.

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Amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disease whose cause remains unknown and for which no cure has been identified. Severe motor speech impairment is common for persons with ALS. Ball, Beukelman, and Pattee (2002) reported that approximately 95% of persons with ALS are severely dysarthric or unable to speak at some point prior to their death. Because of this high percentage of severe speech impairment, the assumption is that persons with ALS will benefit from using augmentative and alternative communication (AAC) technology to converse.

There have been few reports about AAC acceptance and use by persons with ALS. In a Gutmann and Gryfe (1996) account reported in Mathy, Yorkston, and Gutmann (2000), approximately 72% of men and 74% of women accepted and used AAC technology. However, in a recent report by Ball, Beukelman, and Pattee (2004), 90% of persons with ALS accepted and used AAC technology immediately, while another 6% accepted and used AAC technology following some delay. No differences were reported between male and female participants' acceptance. Those who delayed AAC technology acceptance did so for a variety of reasons, including personal resistance to change, physician unwillingness to refer, and family reluctance to relinquish the role of "most effective communication partner." Of the 4% who completely rejected AAC, the participants demonstrated either (a) severe co-occurring frontal temporal dementia or (b) experienced multiple serious health conditions, such as cancer or heart disease, in addition to ALS.

Based on the extant published research, AAC technology acceptance and use has apparently increased during the past few years. One reason for this recent increase in acceptance is likely due to new funding availability for this technology. Beukelman, Yorkston, and Garrett (2007) indicated that the availability of funding for AAC technology and services has improved considerably in the United States during the last decade, with Medicaid funding consistently available in most states. In 2000, Medicare began funding AAC technology (considered durable medical equipment); by assigning the moniker of Speech Generating Devices (SGDs) specifically to the devices that produce speech output. The impact of this nationwide change in policy is that SGDs have been subsequently approved for coverage by numerous other funding institutions, including private insurance companies (Beukelman, Yorkston, & Garrett, 2007) and the Veteran's Administration (L. Golinker, personal communication, January 29, 2007), among others.

Several research groups have reported attitudes toward AAC technology and AAC technology use patterns by persons with ALS, their caregivers, and family members. Mathy et al. (2005) documented the communication activities supported by various communication methods for persons with spinal and bulbar ALS. Fried-Oken at al. (2005) reported very positive attitudes of ALS caregivers toward AAC technology. In this study, caregivers with greater AAC technology skills reported greater rewards associated with caregiving. They reported increased perception of closeness to the person with ALS and less difficulty providing care. Richter, Ball, Beukelman, Lasker, and Ullman (2003) compared the attitudes of people with ALS, caregivers, and unfamiliar listeners toward AAC strategies. They reported a high level of agreement among those with ALS and their caregivers, with clear preference for using AAC strategies as compared to attempting to decipher unintelligible natural speech. A high level of agreement among the listener groups and unfamiliar listeners was also identified.

A review of the literature reveals little systematically collected information about the duration of AAC technology use by persons with ALS. Mathy et al. (2000) reported on the AAC use patterns of 33 persons between 1988 and 1996, whom Mathy (1996) initially described in a presentation. For all of these persons with ALS, duration of AAC use averaged 1.2 years. Those with bulbar ALS averaged 0.8 years and those with spinal ALS averaged 1.8 years. The physical, nutritional, respiratory, and communication status of the participants at the time of data collection is unclear.