Part 1: Importance of Early AAC Evaluation and Implementation
You’ve recently been diagnosed with ALS and may be feeling overwhelmed by the multiple facets of the disease and how it will impact your life and family. One aspect that concerns many people with ALS (PALS) is the fear of losing the ability to communicate. Indeed, the potential loss of speech function was rated as one of the worse symptoms of the disease in a study that investigated the impact of ALS on mental health and daily living in PALS (Hecht et al., 2002). Fortunately, the advent of technology has afforded the development of a variety of communication devices, aides, and apps that can be utilized to promote effective communication in PALS.
The purpose of this four-part series is to provide education, guidance, and direction on Assistive Communication Devices for PALS (sometimes referred to as AAC devices). We will highlight the various technologies available to help you continue to communicate effectively with your family, friends, and health care providers. Specific and timely information will help you navigate the often complicated process to obtain an assistive communication device at the optimal time to make the transition to this method of communication as smooth and stress-free as possible. Our ultimate goal is to empower PALS with valuable and critical information to allow you to make educated decisions that will maximize your communication abilities across a variety of settings.
What are Assistive Communication Devices?
Assistive communication devices include both electronic and non-electronic devices that support or supplement communication for individuals who can no longer use their natural speech/voice to communicate effectively. Another term commonly associated with these devices is “AAC” which stands for augmentative and alternative communication devices and refers to any form of non-verbal communication used to express thoughts, ideas, wants, and needs. Non-verbal communication can include gestures, facial expression, sign language, pictures, symbols, and writing. Currently, there are many AAC options available to assist your communication including:
- Low-tech communication boards and writing pads
- Apps for tablets, phones, and computers
- Custom high-tech speech generating devices (SGD) that speak the phrases you create
Many of these devices support multiple access or ways to interact with the device to accommodate limited or reduced motor function. For example, one person may touch selections on a screen or keyboard, others will press or push a large switch or button with a body part (hand, foot, elbow, head, etc.), while others will make choices by simply moving their eyes (eye tracking). A more detailed discussion of the various available technologies available will be discussed in Part 2 in the coming weeks.
My speech is fine. Why do I need to learn about assistive communication devices now?
PALS experience ALS symptoms in different ways, at different times, and at different rates that are largely dependent on the predominant disease onset type (spinal vs. bulbar). Although the rate of symptom progression is variable, the sequence of speech symptom appearance follows a predictable course (see: http://www.aacinstitute.org/Resources/Evidence/ALS/alsstages.html) and a reported 80-95% of PALS are unable to meet their daily communication needs using natural speech at some point during the disease progression (Beukelman, Fager, & Nordness, 2011). Given the importance of communication to PALS and the high percentage of AAC use; education and discussion of available non-verbal communication devices and aides is paramount for PALS. Unfortunately, however, there is a tendency for PALS, caregivers, and even medical professionals to wait for AAC consultation, evaluation and implementation until speech intelligibility and communication effectiveness is already impaired. There are a number of reasons why this is not an advisable approach and why consideration of AAC technology and evaluation should be discussed early in the disease before communication and speech intelligibility are compromised.
It is important to learn about assistive communication devices and obtain an AAC evaluation early before speech impairments are present because:
- Rapid Nature of Disease and Time to AAC Fitting:
Although noticeable changes in speech and voice are variable in PALS, once speech intelligibility begins to decrease, it often deteriorates at a rapid rate resulting in limited time for implementation of AAC intervention (Beukleman et al., 2011). This rapid decline is further complicated by the lengthy process for the acquisition of a specialized and customized AAC device to fit your lifestyle and unique needs. In our center, for example, we have seen the process from referral to an AAC specialist to the delivery of an actual AAC device take anywhere from one month (best case scenario) to five-months (worst case scenario). Why does this take so long you might ask? Multiple steps and boxes that need to be ‘checked’ and this process involves coordination between your neurologist (referral), a specialized Speech Language Pathologist (AAC evaluation), your insurance company (billing) and the AAC vendor (AAC device). Typically, the process involves: 1) referral from your medical provider for an AAC evaluation; 2) the AAC evaluation is conducted by a specialist SLP; 3) the SLP writes up the AAC assessment and submits this and other required paperwork to your insurance company / Medicare for coverage; 4) approval is obtained from your insurance company; and 5) the AAC device is ordered and shipped to your home; and 6) a representative from the vendor may provide a home visit training session with you if you request it (highly recommended) and you begin to incorporate the device into your daily living. Any hiccup or glitch in any one of these steps can slow the process down. Given the time this can take, in addition to other factors listed in this article, we promote early referral for AAC evaluation in our multidisciplinary ALS clinic.
- Learning Curve for Your AAC Device:
Like any new technology, there is a learning curve associated with efficient use of an AAC device. Therefore, it is strongly recommended that PALS obtain their device as soon as possible, while they can still effectively communicate using their natural speech. Having the ability to verbally ask questions or request assistance with the device during this learning curve reduces pressure, stress, and frustration for both the patient and the family members and minimizes the vulnerability associated with the potential loss of communication. One way to begin incorporating an AAC device into your daily practice is by using the device when your voice becomes fatigued. It is not necessary to begin using the device exclusively for all communication while your natural speech is still effective.
- Early Implementation Affords Ability to Voice Bank:
If considered and acted upon early, PALS can take advantage of new voice banking technologies that afford the preservation of ones own voice that can be later incorporated and used on a SGD, I-pad, or android device to communicate (rather then use of a generic voice). This can be quite important for PALS because the human voice contains unique qualities that add a personalized and unique touch and help loved ones, friends, and even pets immediately identify the speaker. A new software program called Model Talker (http://www.modeltalker.org) is available to assist PALS in the process of voice preservation, otherwise known as ‘voice banking’. Voice banking works best with clear and intelligible speech, further emphasizing the need for consideration of future communication needs early in the disease process before there are noticeable speech disturbances. The voice banking process requires that a set of 1600 sentences be recorded and, therefore, is a considerable time commitment that typically takes six-eight hours. For best results, we recommend that PALS devote one hour a day over a two-week period to bank the required 1600 sentences. This minimizes fatigue and breaks up the arduous task into smaller, manageable chunks of recording time. After completion of these recordings, Model Talker converts the samples into a personalized synthetic voice that can be utilized by several assistive communication, I-Pad, and Android devices so that the speech generated sounds like you! Again, for best results it is necessary to capture your speech when it is the clearest and prior to the onset of any changes. Alternatively, if you have already noticed dramatic speech changes, a voice donor can complete the voice banking procedures so that you can use their personalized voice rather than the typical, generic, pre-recorded voices on SGDs.
- Impact of New Medicare AAC Regulations:
If you are a PAL covered by Medicare, it is also important to learn about assistive communication devices early due to recent policy changes that significantly impact obtaining and using an AAC device. In April of 2014, Medicare classified assistive communication devices as standard durable medical equipment (DME). With this new classification, AAC devices are no longer purchased outright for PALS. Instead, devices are ‘rented’ for 13-months, and only after this 13-month period do you become the device owner. The practical significance of this change is staggering. First, under this new classification the device can be taken away from you if you are hospitalized, admitted into a long-term care facility, skilled nursing facility or hospice – that is to say, just when you would need it most. In the unfortunate event that this occurs, the device will only be returned to you after obtaining a Certificate of Medical Necessity from your physician and the rental time clock can be reset. Further, during the 13-month rental period, you cannot “unlock” all of the available features of the device which allow you to email, text, make phone calls or use environmental controls (lights, fans, TV, etc.) until the rental period is up. Therefore, these new stipulations encourage early referral and attainment of an AAC device for PALS in order to ‘kick start’ the 13-month time clock early in the disease process when you are less likely to be hospitalized (and have the device taken away). For more information on this topic see Medicare Advocacy. At the time of this article publication, these restrictions only apply to PALS with Medicare as their primary health insurance. It should be noted, however, that private insurance companies often follow Medicare’s model so this could become the reality for all PALS if this policy stays in place. To avoid these Medicare imposed restrictions, SGDs can be purchased directly from the manufactures, however, the cost of a high tech device equipped with eye tracking capabilities prohibits most from this option (approximately $15,000). For those interested in this option that already own a laptop computer or tablet (compatible with Windows Pro 8) the software used on the high tech SGDs can be purchased and installed onto your personal device (Tobii Communicator 4 software and Tobii PC Eye Go) for approximately $2,300. While this option is not covered by insurance, it is nearly equivalent to the 20% co-pay required by Medicare, so it may be an alternative option for your consideration. The advantage is you would own the device (laptop or tablet) and would not be subject to any restrictions. In addition, your device is smaller, lighter, and more portable than most of the SGDs with eye tracking currently on the market. See teamgleason.org for a video of this system in use. At this time, many SLPs and organizations such as the ALS Association, The Center for Medicare Advocacy, the American Speech-Language Hearing Association (ASHA), as well as 170 other organizations have taken action to try to change Medicare’s policies regarding speech generating devices. Please visit these websites for ways you can help to support change:
Most PALS will require AAC devices to supplement or replace verbal communication at some point during the disease progression. In Part I of this series we highlight the importance of EARLY education, evaluation, and implementation of AAC technologies to empower you and enhance your communication effectiveness. Early AAC implementation is necessary because:
- The rate of speech decline in ALS is fast
- The process to obtain an AAC device can be timely
- Facilitates the associated learning curve and allows for gradual and stress free use into every day living
- Those with Medicare coverage can get that 13-month clock ticking and take ownership of the device sooner
For a link to a free downloadable educational booklet on AAC devices, visit our laboratory website at www.nssrlab.org and click on ‘patient resources’. In our next edition we will detail currently available devices from low-tech to high-tech and everything in between!
Beukelman, D., Fager, S., & Nordness, A. (2011). Communication Support for People with ALS. Neurol Res Int, 2011, 714693.
Hecht, M., Hillemacher, T., Grasel, E., Tigges, S., Winterholler, M., Heuss, D., Neundorfer, B. (2002). Subjective experience and coping in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord, 3(4), 225-231.
Lisa G. Hess, B.A. and Emily K. Plowman, Ph.D., CCC-SLP,
Neuromotor Speech and Swallowing Restoration Laboratory
Departments of Communication Sciences and Disorders and Neurology
University of South Florida