WEBVTT 00:00:08.563 --> 00:00:13.051 Communication 00:00:13.220 --> 00:00:23.530 What challenges arise when communicating with people with profound intellectual and multiple disabilities? 00:00:24.450 --> 00:00:29.630 I think the biggest challenge in communicating 00:00:29.630 --> 00:00:35.130 with people with profound intellectual and multiple disabilities is diagnosis. 00:00:35.130 --> 00:00:38.910 Diagnosis in the sense of finding out 00:00:38.910 --> 00:00:42.770 what communication skills are already present, 00:00:42.770 --> 00:00:45.630 what communication needs exist. 00:00:45.630 --> 00:00:48.490 And here I am not concerned with 00:00:48.490 --> 00:00:52.810 postulating a diagnosis 00:00:53.634 --> 00:00:56.074 in which we look at this person 00:00:56.074 --> 00:00:57.134 with profound intellectual and multiple disabilities, 00:00:57.134 --> 00:00:59.334 but rather people with profound intellectual and multiple disabilities, 00:00:59.334 --> 00:01:03.014 in the diagnosis of people with profound intellectual and multiple disabilities, 00:01:03.014 --> 00:01:06.274 we focus primarily on the environment. 00:01:06.274 --> 00:01:12.854 This is because the environment can provide important clues 00:01:12.854 --> 00:01:14.514 about what the person is already capable of, 00:01:14.514 --> 00:01:16.014 what they already understand, 00:01:16.014 --> 00:01:18.594 whether they are still at a pre-intentional 00:01:18.594 --> 00:01:21.174 or pre-symbolic level of communication 00:01:21.174 --> 00:01:24.754 or can it already make deliberate, conscious, 00:01:24.754 --> 00:01:28.754 targeted utterances? 00:01:28.754 --> 00:01:31.754 And if it can, what do they look like? 00:01:31.754 --> 00:01:33.274 Are they physical movements? 00:01:33.274 --> 00:01:38.074 Are they vegetative movements or expressions? 00:01:38.074 --> 00:01:40.674 Can they perhaps already 00:01:40.674 --> 00:01:42.334 use various aids? 00:01:42.334 --> 00:01:47.294 That means communication is basically 00:01:47.294 --> 00:01:48.514 a very important step 00:01:48.514 --> 00:01:51.814 in self-determination, in understanding 00:01:51.814 --> 00:01:55.142 and through these initial communicative possibilities 00:01:55.142 --> 00:01:56.642 we also learn again 00:01:56.642 --> 00:02:00.442 how language development is progressing, 00:02:00.442 --> 00:02:01.722 how advanced their language skills are, 00:02:01.722 --> 00:02:05.442 how high is the person's language competence. 00:02:05.442 --> 00:02:07.722 So in diagnostics, 00:02:07.722 --> 00:02:08.842 that's what it's about, 00:02:08.842 --> 00:02:11.202 it's not just about determining the 00:02:11.202 --> 00:02:15.362 language skills of people with profound intellectual and multiple disabilities, 00:02:15.362 --> 00:02:18.042 but above all also involves 00:02:18.042 --> 00:02:20.182 the social environment 00:02:20.182 --> 00:02:22.182 of the educational, therapeutic, and professional 00:02:22.182 --> 00:02:24.774 all those who have to do with the person 00:02:24.774 --> 00:02:27.314 or are involved in support or educational processes. 00:02:27.460 --> 00:02:36.910 What potential can assisted communication have for this group of people? 00:02:38.231 --> 00:02:41.990 In assisted communication, we have seen 00:02:41.990 --> 00:02:46.630 have seen many new developments 00:02:46.630 --> 00:02:47.850 and discoveries. 00:02:47.850 --> 00:02:50.550 Many new developments have been initiated. 00:02:50,550 And these include, among other things, 00:02:53,550 one or two new language support concepts. 00:02:56.210 --> 00:02:57.870 And we now know 00:02:57.870 --> 00:03:02.930 that people with profound intellectual and multiple disabilities in particular 00:03:02.930 --> 00:03:05.590 can be supported in communication 00:03:05.590 --> 00:03:07.450 to such an extent 00:03:08.130 --> 00:03:09.610 that we don't have to wait 00:03:09.610 --> 00:03:11.550 until they understand symbols. 00:03:11.550 --> 00:03:14.010 That's how it used to be 00:03:14.010 --> 00:03:16.110 the idea of assisted communication. 00:03:16.110 --> 00:03:17.830 First you need to understand symbols, 00:03:17.830 --> 00:03:19.990 then people can recognize the symbols 00:03:19.990 --> 00:03:22.630 and then they can also communicate with them. 00:03:22.630 --> 00:03:25.950 With these new language support concepts, 00:03:25.950 --> 00:03:27.210 and here I am now 00:03:27.210 --> 00:03:29.910 particularly concerned with the new concepts 00:03:29.910 --> 00:03:31.950 following core vocabulary research, 00:03:31.950 --> 00:03:35.550 we know that abstract symbols, 00:03:35.550 --> 00:03:36.910 abstract words 00:03:39.042 --> 00:03:41.982 have a high communicative demand. 00:03:41.982 --> 00:03:44.142 So here, for example, words like 00:03:44.142 --> 00:03:47.362 ‘again’ and ‘done’ or ‘again’ and ‘stop’. 00:03:47.362 --> 00:03:50.702 That means I can use ‘again’ much more often 00:03:50.702 --> 00:03:57.422 than ‘music’ or ‘plate’ or ‘food’. 00:03:57.422 --> 00:03:59.842 “Again” and “done,” 00:03:59.842 --> 00:04:01.562 when I am given these two words 00:04:01.562 --> 00:04:03.342 at my disposal, 00:04:03.342 --> 00:04:07.262 I can use them in very different situations in life 00:04:07.262 --> 00:04:09.169 and thus have the opportunity to 00:04:09.437 --> 00:04:11.170 perhaps experience for the first time 00:04:11.170 --> 00:04:13.550 that even with a profound intellectual disability 00:04:13.550 --> 00:04:16.769 change my environment. 00:04:16.769 --> 00:04:22.990 Until now, perhaps a lot has been done to me, treated me. 00:04:22.990 --> 00:04:24.190 I was pushed here, 00:04:24.190 --> 00:04:25.630 I was pushed there, 00:04:25.630 --> 00:04:28.610 I was dressed, I was undressed, 00:04:28.610 --> 00:04:29.430 I was cared for. 00:04:29.430 --> 00:04:32.590 With just a few words, 00:04:32.590 --> 00:04:35.050 but ones that occur frequently in everyday life, 00:04:35.050 --> 00:04:37.190 we have the opportunity to 00:04:37.190 --> 00:04:38.890 also include people with profound intellectual and multiple disabilities 00:04:39.522 --> 00:04:42.542 in communication and thus also to a 00:04:42.542 --> 00:04:45.002 certain extent in participation. 00:04:45,002 So perhaps let's take this example again. 00:04:47,262 I can use ‘again’ when eating, 00:04:52.042 --> 00:04:55.362 if I want more of the food. 00:04:55.362 --> 00:04:58.262 And “done” when I don't want any more. 00:04:58.262 --> 00:05:03.242 I can use it in work situations, 00:05:03.242 --> 00:05:05.402 in the living area. 00:05:05.402 --> 00:05:08.762 I can use it in the care sector. 00:05:09.666 --> 00:05:12.586 The warm water again, 00:05:12.586 --> 00:05:13.766 the cream again, 00:05:13.766 --> 00:05:15.886 massage again, 00:05:15.886 --> 00:05:24.146 wash your hair again or put the hair tie back in, 00:05:24.146 --> 00:05:25.226 put the hair tie back in, 00:05:25.226 --> 00:05:28.486 one more and paint your fingernails again 00:05:28.486 --> 00:05:29.946 or the next finger. 00:05:29.946 --> 00:05:32.646 That means there are lots of everyday situations 00:05:32.646 --> 00:05:38.286 in which I can use this core vocabulary and thus 00:05:38.722 --> 00:05:41.482 people with profound intellectual and multiple disabilities the opportunity to 00:05:41.482 --> 00:05:43.422 influence what 00:05:43.422 --> 00:05:47.682 happens to them and what happens in their environment. 00:05:47.682 --> 00:05:49.922 And thus, perhaps for the first time 00:05:49.922 --> 00:05:51.862 experience self-efficacy 00:05:51.862 --> 00:05:54.782 and experience the power and strength of language. 00:05:56.365 --> 00:06:05.542 Can you also start using assisted communication as an adult? 00:06:06.626 --> 00:06:08.306 It's rarely too early, 00:06:08.306 --> 00:06:10.746 but it's definitely never too late 00:06:10.746 --> 00:06:13.106 to start using assisted communication 00:06:13.106 --> 00:06:16.866 when dealing with people 00:06:16.866 --> 00:06:19.986 who may have had little or no access to communication for 10, 20, or 30 years 00:06:19.986 --> 00:06:22.266 or too little 00:06:22.266 --> 00:06:25.006 in their communication skills. 00:06:25.006 --> 00:06:28.866 We know from many practical reports 00:06:28.866 --> 00:06:31.366 that the use of assisted communication, 00:06:31.366 --> 00:06:34.386 when used appropriately, 00:06:34.594 --> 00:06:36.274 can significantly contribute to reducing 00:06:36.274 --> 00:06:38.214 behavioral problems. 00:06:38.214 --> 00:06:41.934 Not being understood can, of course, 00:06:41.934 --> 00:06:44.634 naturally lead to aggression or even 00:06:44.634 --> 00:06:47.114 withdrawal or depression. 00:06:47.114 --> 00:06:49.954 But being understood naturally 00:06:49.954 --> 00:06:52.794 also has a major impact on quality of life 00:06:52.794 --> 00:06:54.234 and life satisfaction. 00:06:54.234 --> 00:07:00.414 This means that being better understood 00:07:00.414 --> 00:07:05.910 not only reduces behavioral problems, 00:07:05.910 --> 00:07:06.950 if they exist, 00:07:06.950 --> 00:07:08.370 but can also, if necessary, 00:07:08.370 --> 00:07:10.730 lead to a reduction in medication, 00:07:10.730 --> 00:07:13.010 if one tries to 00:07:13.010 --> 00:07:15.110 control behavioral problems with medication 00:07:15.110 --> 00:07:15.990 . 00:07:15.990 --> 00:07:19.110 So it definitely has a double effect. 00:07:20.662 --> 00:07:29.274 What challenges arise in workplaces and educational settings when implementing assisted communication? 00:07:29.282 --> 00:07:32.962 The biggest challenges for institutions 00:07:32.962 --> 00:07:37.162 arise in implementation, 00:07:37.162 --> 00:07:38.062 in the question of 00:07:38.062 --> 00:07:40.162 how to implement assisted communication 00:07:40.162 --> 00:07:42.422 in the institutions. 00:07:42.422 --> 00:07:45.362 It is not enough to 00:07:45.362 --> 00:07:48.902 have an AAC representative in the facility, 00:07:48.902 --> 00:07:51.722 having an AAC representative in the residential group, 00:07:51.722 --> 00:07:54.122 but supported communication is 00:07:54.122 --> 00:07:56.572 a consistent model, 00:07:56.610 --> 00:07:58.370 a consistent concept, 00:07:58.370 --> 00:07:59.690 a consistent principle, 00:07:59.690 --> 00:08:02.450 which encompasses all areas of life. 00:08:02.450 --> 00:08:06.270 You can't just do ten minutes of 00:08:06.270 --> 00:08:08.910 UK in one day, or else the representative will come and 00:08:08.910 --> 00:08:11.130 then there are another 20 minutes of AAC 00:08:11.130 --> 00:08:14.970 and the rest of the day goes on as usual, 00:08:14.970 --> 00:08:20.490 but the implementation of AAC as a concept 00:08:20.490 --> 00:08:23.230 also has something to do with the fact 00:08:23.230 --> 00:08:25.970 that people who work in the facility 00:08:25.970 --> 00:08:27.650 are familiar with this basic idea, 00:08:27.650 --> 00:08:28.970 with this philosophy, 00:08:28.970 --> 00:08:30.870 behind the concept 00:08:30.870 --> 00:08:32.450 of Augmentative and Alternative Communication, 00:08:32.450 --> 00:08:33.970 also with the view of humanity 00:08:33.970 --> 00:08:34.789 that lies behind it, 00:08:34.789 --> 00:08:39.630 that everyone has their own recognition and 00:08:39.630 --> 00:08:41.730 that everyone also has their own rights 00:08:41.730 --> 00:08:42.870 and the same rights. 00:08:42.870 --> 00:08:45.250 That has something to do with this basic attitude 00:08:45.250 --> 00:08:47.550 and that's not something 00:08:47.550 --> 00:08:49.570 that you can delegate to individuals, 00:08:49.570 --> 00:08:52.350 but must be implemented in the 00:08:52.350 --> 00:08:53.970 entire team. 00:08:54.946 --> 00:08:58.546 I see the implementation of supported communication in institutions 00:08:58.546 --> 00:09:00.946 as the biggest challenge, 00:09:00.946 --> 00:09:04.746 because it means 00:09:04.746 --> 00:09:07.206 that you also have to do a lot of persuading. 00:09:07.206 --> 00:09:10.146 And for that I need various allies. 00:09:10.146 --> 00:09:11.486 I need a team. 00:09:11.486 --> 00:09:13.406 Above all, I also need leadership 00:09:13.406 --> 00:09:14.546 that supports this. 00:09:14.546 --> 00:09:18.066 I need it at all levels 00:09:18.066 --> 00:09:20.626 of the hierarchy in the institutions, 00:09:20.626 --> 00:09:24.073 the idea of supported communication must be 00:09:24.770 --> 00:09:25.930 supported, 00:09:25.930 --> 00:09:30.510 so that everyone benefits and not just a few 00:09:30.510 --> 00:09:32.330 do a lot of AAC and then 00:09:32.330 --> 00:09:33.550 ultimately fail again and again 00:09:33.550 --> 00:09:35.390 fail because of the framework conditions, 00:09:35.390 --> 00:09:37.290 fail because of attitudes, 00:09:37.290 --> 00:09:39.170 by people's perceptions. 00:09:39.170 --> 00:09:41.970 UK is a consistent principle, 00:09:41.970 --> 00:09:45.930 a consistent concept and not an additive solution, 00:09:45.930 --> 00:09:50.290 in order to do something good here and there on a selective basis.