I really appreciate what everyone has written on this topic- I wanted to toss out a few more thoughts- 1. Molly, I really appreciate what you wrote about not forcing SGDs on people. I wanted to toss out an alternative scenario, though- I had a client with bulbar onset who was happy with writing, and didn't want a portable device. I mentioned the benefits of it (she could use it while in the car, with her grandchildren, while her caregiver was multi-tasking, for the telephone.) I also took the direct approach of mentioning that she could still use it if her hands grew too weak to write. She ended up getting a LightWriter. When it got harder for her to write, she used the LW for many years (and then reverted back to low tech auditory scanning at the very end of life). (I think that the "low tech" then "high tech" then "low tech" progression is a common one.) I had a couple of "writers" who lost the ability to write, and ended up finally using their device.) On one hand, I don't want to force a device on someone. On the other hand, sometimes people have no conception of what's going to be coming down the road- sometimes what people end up using surprises me. 2. I had a number of clients who solely relied on low tech. I think this was for a couple of reasons- a. In their particular situation, low tech was faster, more efficient, simpler. b. Using high tech puts the burden on the user. Using low tech puts the burden on the caregiver (i.e. they are doing most of the work.) c. Regarding low tech vs. high tech scanning. Low Tech auditory scanning is probably going to be much faster, because a human partner is always more intelligent than a computer. 3. I just thought of another strategy I would sometimes use with clients- (esp. clients who I knew well.) I would say that sometimes low tech (or residual speech) was easier for the user, but required a more work for the caregiver. In the case of someone with residual speech, I might say something like- "If you use a device with speech output device, that means you can be at the table, and your wife can be preparing a meal, and multi-tasking,- she doesn't have to be right in front of you... I had another client who I was close with, whose refusal to use his device was destroying his marriage (I also think he had some cognitive problems). (He was trying to get by on residual speech). I suggested a strategy- I suggested that during the day, when his speech was better, if it was OK with his wife, he would talk and she would listen. At night, when she was tired, and his speech was worse, he could try using the device, and she wouldn't have to work so hard. (I don't think he took my suggestion, but when he lost all speech, he started using the device. I have some more thoughts- but I'll put them in a separate email. Margaret Cotts -----Original Message----- From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Molly Doyle Sent: Friday, June 06, 2008 7:09 AM To: xxxxxx@xxxxxxxxxxxxxxxxxxxx Subject: RE: [Assistive Technology] AAC Acceptance / Non Acceptance for people with ALS Our experiences at our center are similar to Margarets in terms of most of our PALS using variety of AAC methods, including SGDs. Many do rely on their speech as long as possible (which we'd all expect) and then use methods to augment when needed. Some have stated they hope "they wont need a device." To take a few steps back ... I think its OK if a PALS decides not to use an SGD even if we, as clinicians, or the family thinks he or she should. We need to respect the PALS decision. Prior to the PALS making this decision, as a clinician, we need to make sure we do a good eval w. appropriate access, consideration of all the factors Margaret lists below. If the PALS is considering using an SGD, we need to make sure its properly configured for them. The last thing we want is to recommend SGDs and have the SGDs sitting on the shelf & not being used. I guess I didnt answer Margaret's question ...I think Margaret answered her own question! She listed many factors that may cause a PALS not to want a AAC or an SGD. I do think we all need to consider these factors in our eval before asking insurance to fund. Molly Molly Doyle MS CCC CART-Rancho Los Amigos National Rehabilitation Center Downey CA 90242 www.rancho.org/cart Please be advised that we cannot guarantee confidentiality of email communications. If you have received this message in error, please notify the sender by reply e-mail and delete the message and any attachments. This message (including any attachments) may contain confidential information intended for a specific individual and purpose, and is protected by law. Any unauthorized disclosure, use, copying, or distribution of this message, or the taking of any action based on it, is strictly prohibited. >>> "Margaret Cotts" <xxxxxx@xxxxxxxxxxx> 06/05/08 7:32 PM >>> Hi Judith- Thanks for your letter- I have to say,- I've had many people who used high-tech AAC, and a combination of high tech and low tech, but I also had a number of clients who didn't end up using their SGD. I realize that I should have added another question, and the question is- "Why do PALS sometimes have non-acceptance of AAC?" I think there are a lot of reasons why, some being very valid... For example- 1. The person is still getting by on residual speech, and it's more efficient to speak with repetitions than use the device 2. The person might not have rec'd enough support on the device... (either in terms of training or physical access.) I've met plenty of folks with ALS who had been set up with an inappropriate access system, or were in an inappropriate user interface. (There are also not enough AAC service providers.) 3. The person might be using AAC, but it might be in the form of low tech. 4. The person might have some ALS related cognitive issues 5. The person might be afraid or overwhelmed with so many changes. 6. The person might be tired, or not have a lot of energy to deal with something new. 7. The individual may be overwhelmed by other ALS related health issues, or life issues that they are dealing with. 8. The person might have a significant dysarthria, and hear themselves speak, and in their head it sounds OK, so they think that other people should be able to understood. 9. There could be some emotional issues going on- (i.e. The feeling that they should be able to get by on speech, and that using an SGD is somehow "giving in" to the disease. 10. They could be very stubborn. 11. They could be in a family situation where the family members might be overwhelmed by an SGD. 12. "My spouse knows exactly what I want." 13. The person finds it easier or more efficient to use low tech. Any other thoughts on reasons why people don't use AAC (or rather, an SGD)? One thing I forgot to mention in my previous email- When a person was non-accepting for whatever reason, I always tried to start the conversation by acknowledging what they were saying, and acknowledging how difficult a situation it is. Thanks for all your thoughts on this- Margaret -----Original Message----- From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Judie Benwick Sent: Thursday, June 05, 2008 6:21 PM To: xxxxxx@xxxxxxxxxxxxxxxxxxxx Subject: RE: [Assistive Technology] AAC Acceptance / Non Acceptance for people with ALS Margaret, My experience has been that even those PALS who initiate the AAC evaluation and purchase tend not to use the AAC very much, or at all, once they receive it. I find that for whatever reason most PALS do not have a great urge to communicate...certainly not at the level that we might expect to be present. Usually it is family members who seem to want the PALS to use an AAC device because the family is frustrated trying to understand. I find that I am more successful getting them to purchase the AAC than I am getting them to use the device after the purchase/delivery. I try to encourage PALS who have AACs to use their devices at support group meetings, but even among their peers the majority do not seem to want to communicate through these devices. They bring them but they don't use them (or maybe it is the caregiver who is bringing it to the meeting). I give them a list of reasons why they might want to have an AAC sooner than they might think they should consider one (e.g., learning curve, loss of opportunity after hospice enrollment, etc.) and for later when they truly cannot communicate (e.g., to let their caregiver know where to scratch an itch). I also try to explore their unique reasons for not wanting to even try a device, but their answer is generally a shrug. Maybe it is a control issue...being in control of whether or not they communicate through an AAC device may feel to them like one of the very few things they can control. Judie Judie Benwick, MSH, MPH Care Coordinator The ALS Association, Florida Chapter 3242 Parkside Center Circle, Tampa, FL 33619 (Toll-free) 888-257-1717, ext. 112 (Jacksonville) 904-688-0886 (Fax) 904-685-5203 The ALS Association's eStore offers a variety of unique apparel and one-of-a-kind gifts for all occasions. To shop the eStore, go to www.alsa.org and click on the eStore link, found "On The Inside". -----Original Message----- From: xxxxxx@xxxxxxxxxxxxxxxxxxxx on behalf of Margaret Cotts Sent: Thu 6/5/2008 7:43 PM To: xxxxxx@xxxxxxxxxxxxxxxxxxxx Subject: [Assistive Technology] AAC Acceptance / Non Acceptance for people with ALS Hi - I have been thinking a lot lately about AAC acceptance in terms of people with ALS (i.e. using AAC, or even starting the evaluation process .) (By the way, I was talking to Alisa Brownlee, and she made a good point- she mentioned that that "Un-acceptance" was a better term than "denial", because some people aren't in denial- they know perfectly well that they have a problem, but they aren't ready to accept using AAC yet.) I'm curious to hear about different strategies people use when working with clients who aren't ready to start the evaluation for an SGD/use AAC (even though it may be time.) I was trying to think of different "strategies" I used with clients, for example- (I think I would gauge what I would say, depending on what I thought the person could handle. Some people get that "deer in the head a. (SLIGHTLY DECEPTIVE/DEFLECTIVE) (I can't think of another word for it-) "I hear that you are not ready to start the process, but sometimes it can take several months to get a device through insurance. I would rather you have it and not need it, than need it and not have it." b. CARROT - "I hear you aren't ready to use the device yet, but you can use it as a remote control, and get it unlocked and use it for email." c. DIRECT- Just being straightforward d. BRUTALLY DIRECT Over the years I had a couple of clients who just would not do the evaluation for an SGD- with some of them I felt I had to be really really direct. Thanks for your thoughts on this. Margaret Margaret Cotts, MA, ATP DynaVox Technologies & Mayer-Johnson Regional Education Specialist Greater San Francisco Bay Area (866) 396-2869 x7984 (510) 282-0895 (cell)
