Re: Enabling- I have mixed feelings about this term. (Yesterday, when I was on the phone with Alisa, and I used the word "denial", she said that she used the word "un-acceptance". I realized, not only is the word "denial" not accurate, but it also has negative connotations that are somewhat blaming of the individual. I think the word "enabling" implies a pathology, and is somewhat blaming of the communication partner. It doesn't really take into account all the different reasons a communication partner might take a larger role in the conversation. a. I think that yes, there are probably some spouses/caregivers who are "enabling", by always jumping in and finishing the sentence. I think there are some caregivers who use low tech because they think it's faster and easier for the person with ALS- they don't want to see their loved one suffer, or struggle. (I also think that with people with ALS, being able to communicate independently is not necessarily the highest goal.) The wife of a PALS once said something that always stuck with me. Her husband had residual speech, and she was translating for him, even though I could barely understand him. I know it added a lot of burden to her life. However, she said- "My husband really wants to talk, and I want to respect his autonomy- it's one of the few things he has control over, and I really want to respect his decision." My main feeling is that communication is a two way street- it has to work for both parties, and there has to be some compromise. So if both parties are OK with having the spouse to translate, or have the extra work of doing low tech, then it's fine. Margaret Cotts -----Original Message----- From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Judie Benwick Sent: Friday, June 06, 2008 6:36 AM To: xxxxxx@xxxxxxxxxxxxxxxxxxxx Subject: RE: [Assistive Technology] AAC Acceptance / Non Acceptance for people with ALS Thanks, Margaret. That is a good list of reasons for non-acceptance. On the flip side, what do you see as the primary characteristics of a PALS who is more easily able to accept, adapt and regularly use their AAC device? Do you see a difference in acceptance and use among PALS who are living alone and have a greater need to communicate with others on their own (i.e., no caregiver to do this for them routinely)? Charles mentioned enabling as a possible factor and that reminded me of a wife at one support group meeting who announced that her husband had just received a second device [courtesy of the VA] that he liked much better. When someone addressed a question to him at the meeting, his wife said to him "go ahead, honey" but then she proceeded immediately to respond for her husband without giving him a chance. 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 10:32 PM To: xxxxxx@xxxxxxxxxxxxxxxxxxxx Subject: RE: [Assistive Technology] AAC Acceptance / Non Acceptance for people with ALS 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)
