Since 2009, there have been a number of referrals for AAC assessments to our clinic for individuals diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease. The following are resources, strategies, or supports that I have tried to organize here for easy reference.
As the instructor of clinical practicum experiences in these situations, when I first meet with graduate student clinicians about a client diagnosed with ALS, very early on in the process I stress the importance of their being mindful of their own emotional well-being during the experience. Working with individuals who have complex communication needs and their families ~always~ has the potential for feelings to be intense and entangled. With a diagnosis of ALS, everyone involved is confronted with the harshest realities of human frailty and mortality. Everyone copes differently, but I want to make it clear from the outset that it is my belief that trying to ignore or deny that part of this experience, actually cuts them off from the individual they are trying to serve, and is potentially detrimental to themselves. I have provided students with the contact information for the University counseling services, but overall I have been extremely impressed with how well these young adults rise to this experience.
In terms of learning about ALS (overviews about the nature and course of the disease), as well as specific information to guide assessment and being dynamically responsive to changes during intervention:
— The chapter in Augmentative Communication Strategies for Adults with Acute or Chronic Medical Conditions (2007), with supplementary materials, specific to ALS. These are the materials we primarily use for the assessment, along with our general structure (consistent with Beukelman & Mirenda’s 2012 Participation Model).
— A review article by Beukelman, D., Fager, S., & Nordness, A. (2011). Communication support for people with ALS. Neurology Research International, 2011, Article ID 714693, 6 pages. Full text available online at: http://www.hindawi.com/journals/nri/2011/714693/
— This webcast is for individuals with minimal movement. You can just focus on that segment specific to ALS if you prefer: Beukelman, D. & Fager,
S. (2010). Supporting Communication for Persons with Minimal Movement (ALS, Brainstem Stroke). Available on YouTube at http://www.youtube.com/watch?v=aaSJAkubDn8&lr=1&uid=90FYvbn0laJRwVsb-7GRMw
— First person biographies offer unique insight into the experience. Morris Schwartz may have the most famous books about him written, Tuesdays with Morrie (which was also made into a movie). However, Morrie: In His Own Words: Life Wisdom from a Remarkable Man contains his perspective specifically.
— In July of 2005, the Augmentative Communication News (volume 17: 2) focused on ALS and includes an interview in the Social Networks with Linda, wife of Tom, about their experience through his ALS: the strategies they used to help him remain socially engaged, and some of the emotional navigation that evolved through the progress of the disease.
— The University of Nebraska-Lincoln has a variety of resources related ALS including compiled references, and vocabulary resources.
— The website Amy and pALS by Amy Roman, MS/CCC-SLP has considerable information that may be productive.
In terms of means that may be relevant to consider (not necessarily in order of importance):
— No-Tech: In terms of establishing behaviors for yes/no, eye gaze behaviors are typically most reliable. Personally, I like looking up for “yes” and looking to a side for “no” because I feel like these approximate nodding, and shaking the head and that, if possible motorically, these are less open to misinterpretation than blink patterns. I do counsel individuals against using smiles for yes. It has been my experience that this runs a high risk of emotional disconnect — there are a great many questions for which the answer may be “yes” but which no one would ever smile about.
— No-Tech: One gentleman and his wife had conveyed favorite musicians and musical groups. I searched for song lyrics for love songs by these individuals. I explained that I knew that there was much in his heart that he would want to say, but physical and emotional fatigue had made it so difficult. We reviewed the song lyrics, and he was able to convey by eye gaze two that carried sentiments he would’ve liked to say to his wife and I gave her those print-outs.
— No-Tech: Partner coaching is critical so that there are agreed upon understanding of how to structure partner-assisted scanning, how to be attentive to subtle signals, confirming etiquette (is it okay to guess/interrupt?). Dr. Cathy Binger and Dr. Jennifer Kent Walsh wrote about how to coach communication partners in their 2012 ASHA Leader article, “Communication Takes Two,” available through: http://aac.psu.edu/?p=1378. A review of partner vision and hearing is also important so that systems are developed which can be seen and heard appropriately.
— No-Tech and/or Low Tech: Teaching the individual about self-monitoring their circumstances to strategically determine: (a) if they wanted to communicate, and an introductory strategy, (b) what/how much they wanted to say, (c) what means would be most appropriate/effective for the situation, and (d) knowing when/how to get out of a situation and an exit strategy. For example, at the grocery store a person might run into a casual acquaintance who does not know their diagnosis — deciding the depth and length of conversation is very different than a check out clerk who may ask about an unusual vocal quality or use of an AAC support system. With the former, a person might exchange pleasantries and make plans to re-connect at a later time, or might have a prepared card or voice output message to support intelligibility to convey some information. The clerk’s curiosity does not ever trump the individual’s right to privacy, and a smile/wave off or completely ignoring questions may all be appropriate and right for conserving physical and emotional energy. The PowerPoint “SelfMonitoring_SelfPartnerEnvironment” (in Resources with password “m4ter14ls”), was designed as instructional materials to structure talking about and practicing these considerations, but could also be used (shrunk to a smaller size) as a visual cue either for the individual or for assistants.
— Low Tech: The Speakbook (www.Speakbook.org), is a low-tech and free eye-gaze based system which has the potential to be remarkably comprehensive. This may be appropriate for a person who has complex motor challenges and requires an eye-gaze based means, and would be used with a partner either to directly select (e.g., look at corner square and then to shape to identify message), or to support assisted scanning (e.g., look at shape and partner reviews messages). In my own experience, it can be a little involved to assemble from home (getting the pages organized), and in pricing it a local office supply/print shop, it was around $50 to get produced on cardstock, laminated, and bound. That did not include cutting out the section for the eye gaze connection. In populating it, I found I needed to have it opened out fully so that I could ensure that I was placing messages in coordinating locations for both persons to look at the same location.***
— Low Tech: PODD communication books may be appropriate for a person who has motor skills to turn pages and point, or with a partner to scaffold assisted scanning. This would be constructed similar to a book with tabs for the pages — the ‘main’ page is more or less just like a table of contents, and the premise is that includes sentence starters with directions to the page which extends related/topic-specific information.***
*** A number of persons and families have expressed some frustrations/challenges with brainstorming what to put in as vocabulary and messages. There are two examples under the Resources (one related to the Speakbook, one in PODD style), which was my attempt to give a basic starting point — a means of considering if a message is needed (and is phrased the way the person would want it to be), if a message is not needed and should be removed, or if a message is needed but not presently represented. Search under “Sample Eye Gaze Based Low-Tech Communication Support for a Literate Adult” for one which is designed around the Speakbook — if printed double-sided, it does match up. Search under “Sample Communication Book for Literate Adult” for one which is more in keeping with a PODD style. The content in both is very similar and includes messages based on a review of the research by Fried-Oken et. al., (2006) and Beukelman & Gutmann (1999), as well as my own experiences since 2009. Both include messages relative to urgent medical needs which require immediate attention, and one for less urgent medical concerns but that still should be shared with the team. There are blanks, and a blank page for creating additional content. Of course, all of this should be personalized/individualized for relevance, organization, and wording; however, there were a couple of instances that definitely stood out to me and these are highlighted in red: if the person wanted to use their high-tech SGD, whatever that was; the terms “spouse” or “SO” were used to reference the individual’s Significant Other. For myself, I found that having rules to be systematic was helpful. With the Speakbook, I used the heart (top) lines in each quadrant to signify the most important/urgent messages, the circle (second) lines were generally for statements/directives by the speaker, the triangle (third) lines were for questions/requests to the partner, and the square (last) lines were for resolving breakdowns. Similarly, in the PODD-style book, the bottom table on each page included partner-focused questions for column 1, rows 1-4; notification of urgency as column 1, row 5; and the same 5 messages for resolving breakdowns as column 2. I theorized that over time/repeated use, a person could potentially also use hand signals for these numbers (as long as motor skills were retained), as a no-tech generalization for conversation management.
— Low Tech: The MegaBee (http://www.megabee.net/) is potentially interesting as a low-tech option, although I personally have never used it.
— Low Tech: The plastic cover sheet used for poster frames could be used to create a simple eye gaze board with options and alphabet. I do find it helpful to have key (e.g., Help, Something’s Wrong), frequent (I need my glasses, I’m glad you came by), or starter messages (Tell me about…, How is….), along with an alphabet. Alphabet boards should be considered for what organization is most meaningful and effective: for example, ABC order, QWERTY, Vowel aligned (each row starts at a vowel), or by frequency of spelling patterns in English.
— Low Tech: With one gentleman, his family had shared a photo album that had been created for the 50th wedding anniversary with he and his wife. Based on a review of these memories, the team generated a list of things that he ~might~ want to say, also using messages available via commercially available greeting cards or online e-cards associated with categories such as I love you, Just Because, Anniversary, etc. He indicated by eye gaze messages that he considered most relevant in reflecting his feelings. These were printed onto iron-on transfer material for making t-shirts, and then put onto a pillow case as a means of his expressing Pillow Talk messages of love to his wife. After he passed away, she repeatedly expressed how much that Pillow meant to her — that she used it herself and it was a great comfort.
— High Tech: There are clearly a range of communication apps with iOS or Android platforms which may be appropriate for some circumstances/stages of ALS. There are also a variety of dedicated devices which provide comprehensive communication, environmental controls, and other quality of life features (in addition to warranties and tech support), and have a wide range of access methods.
For published references/resources related vocabulary generation,
— Westby, Burda & Mehta (2003) has a solid review of interviewing approaches. This is available at ASHA: http://www.asha.org/Publications/leader/2003/030429/f030429b.htm
— See What We Say: Situational Vocabulary for Adults who use Augmentative and Alternative Communication by Barbara Collier and Janice Light (2000). This may also be helpful for practicing using eye gaze or other no-tech communication signals.
— Relative to communicating at the most intimate levels of social closeness, the quizzes at http://www.5lovelanguages.com may be a way to solicit what means and messages are most relevant to the individual and their closest partners and brainstorm what strategies/supports will contribute to the ability to express and receive the social intimacy that is needed now.– it’s possible to print out the surveys, and they can be reviewed from a variety of categories including for a person who is single, from the perspective of wife or husband, and child-parent.
— Relative to communicating end of life decisions about the course of medical care with persons who had ALS and had asked for support in communicating their wishes, I have used the reference Your Life, Your Choices as a systematic structure. This is a .pdf publication which goes through the components of an Advanced Directive, and I developed Word document (and an alphabet board) to provide eye gaze responses — this is in the Resources (“m4ter14ls”), under EndOfLife_CommunicationSupports . For one family, I provided them with these materials and it was my understanding that they conducted the process on their own. With another couple, the person and his wife were comfortable with the student team being a part of the discussion, and the students conducted this review. In a third, the person and his wife felt they did not want this particular conversation to be a part of a group dynamic, and I met with them privately (without the students). I left this decision entirely up to the individual because while I know the graduate student clinicians benefit from the learning experience, this is also well past what I consider to be appropriate to capitalize on as a “teachable” moment. When the student team was involved, we worked together closely to prepare — including having them go through the process together in role play so that they had the experience of saying/hearing these ideas and options out loud. In both of the cases where I was involved, I was explicit that I am not a physician or lawyer and so could not discuss the medical or legal ramifications: my sole function was to provide a means of voice/communication. In both cases, I gave opportunities to ‘exit’ the conversation repeatedly, and the focus was entirely on unconditional positive regard: it was not my function in any way to comment/judge on what was expressed, only to support means of expressing it. In both cases the spouses were present and also received the information entirely positively — there were a lot of tears, but no one tried to talk the person out of their feelings or wishes.
Finally, as of April 1, 2014, funding of systems became more complicated for persons who use Medicare as their primary insurance provider. Speech Generating Devices have been considered Durable Medical Equipment for some time now but the Centers for Medicare & Medicaid Services (CMS) added them to a list of other DME which is under a Capped Rental Policy — as with hospital beds, blood pressure cuffs, and wheelchairs.
Accordingly, an AAC technology system still has to be justified according to a comprehensive SLP assessment, and prescribed by a physician (including documentation of a face-to-face visit within 6 months of the prescription).
HOWEVER, the system does not belong to the client. It remains ‘owned’ by the insurance company for a period of 13 months. As such:
– Monthly calls will be made to ensure status of client and location.
–> There is a 20% monthly copay associated,
–> It must be reported if the client has to change living environments. That is, if client has to be hospitalized for a significant duration, goes into a nursing facility, or is declared on hospice, the manufacturer may either suspend billing to Medicare (which also suspends the 13-month timeline at that point), bill families, or require the system to be returned. The assumption is that the facility will have these equipment on hand (like hospital beds, blood pressure cuffs, and other DME). There is no recognition/acknowledgement that these systems are highly personalized & customized, so even if a hospital or nursing care facility does happen to have a system on hand it may well not meet the unique needs of the individual.
– The system must remain LOCKED for the 13 month duration. Since it belongs to the insurance company, not the person, it is only a speech prosthetic.
–> Although we cannot say a requirement of a system is that it be unlocked, we need to be very vigilant in advocating for the medical necessity of internet access as a function of communication: discussions/texting with physicians and medical providers (such as pharmacies) is increasingly common; research on medical condition; ability to access forms of persons with shared experience for medical advice and emotional support; and minimizing risk for social isolation and depression are all very real concerns for many of our clients. In addition, many of the manufacturers rely on Internet-based software updates and trouble-shooting options to ensure that systems are functioning appropriately.
– The system sent to an individual may not be new and if repairs are needed within the 13-month period, the system that is returned may not be the same one. Any content/customization could be lost. Suppliers are required to keep systems maintained for 5-years, but how well maintained is not described, and we certainly know how much a difference it can make whether or not a system has been through a variety of users. In addition, the repair scenario is an argument for having an operational goal for making a back-up or other log of critical settings.
Because this is Medicare’s policy, other private insurance companies are or may follow the same approach.
Here is ASHA’s report about these changes: http://www.asha.org/News/2013/CMS-Determines-Rent-to-Own-as-Only-Option-for-SGDs/
There is a sample funding report provided by http://aac-rerc.psu.edu specific to a person with profound dysarthria secondary to ALS (although this reflects an example prior to the capped rental change): http://aac-rerc.psu.edu/index.php/pages/show/id/21#example4
That’s all I can think of for now.
End blip.