 Alright well welcome everyone to our monthly webinar and tonight I'm delighted that we have Amy Goldman to talk about the Communication Bill of Rights reboot and I don't know Amy really well but I'm getting to know her better and I know that you're in for an interesting evening and then we're going to hope, I'm going to chat a little bit about some of the ways that we're using it around the province and I know some of you've been part of that process and then I'm also hoping that maybe some of you will share the ways that you might have used the Communication Bill of Rights in your work coming forward. So with that I'm going to turn it over to Amy and welcome to Virtual Alberta. Well I'm sorry I can't share our Philadelphia springtime with you but thank you for the welcome. Let me just start by telling you a little bit about myself. First and foremost and this is the hat that I'm wearing today is that I'm a member of the National Joint Committee on the Communication Needs of Persons with Severe Disabilities going forward I will just use the acronym NJC. For 24 years I ran assistive technology programs for the Commonwealth of Pennsylvania out of the University Center of Excellence in Developmental Disabilities at Temple University. I currently am the technical assistance specialist for the basically the Eastern U.S. for the National Brief History about the NJC. This was a result of a meeting of the Council of Language, Speech and Hearing Consultants in U.S. State Education Agencies that met together to try to develop national guidelines to meet the needs of children and youth with severe disabilities. As an outgrowth of that the Office of Special Education Programs in the U.S. Department of Education held a consensus conference that then came out with 33 recommendations regarding the education of children with severe disabilities. Many of those had to do with communication and TASH, I don't know how many of you know about TASH. TASH used to stand for the Association for Individuals with Severe Handicaps quote unquote and now it's just called TASH and ASHA organized the NJC. So the first guidance documents were issued in 1992. So 1986, 2016, we celebrated our 30th birthday. It's an interesting organization in that it has members from prominent organizations that care deeply about persons with severe disabilities. What do we mean by persons with severe disabilities? It's typically disabilities that are accompanied with intellectual and developmental disabilities. So ASHA hosts the website at www.ASHA.org slash NJC but ASHA does not own the NJC. So our member organizations are including TASH. The American Association for Individuals with Intellectual and Developmental Disabilities, we have TASH twice, sorry about that, CEC, the Council for Exceptional Children, their Communication Division, RESNA, the Rehabilitation Engineering Society, Rehabilitation Engineering and Assistive Technology Society of North America, ATAP which is the Association of Assistive Technology Act Programs, USAC which is the U.S. Society for AAC, the U.S. Chapter of ISAC, the International Society for AAC and I hope that many of you are members of the Canadian Chapter of ISAC, AOTA which is the American OT Association and APTA, the American Physical Therapy Association. So it is an interdisciplinary membership by design. The purpose of the NJC is one that includes advocacy and again we're talking about individuals who have significant communication support needs. Sometimes we call these individuals with complex communication needs that are accompanied by intellectual disabilities and of course there may be a whole host of other disabilities as well. But I think one of the defining characteristics is a focus on people with intellectual and developmental disabilities, often a population that is devalued and just not addressed. Again the focus of the NJC is research, policy, practice and training. It's a huge need. I don't have the statistics for Canada but the stats in the U.S. are that there are approximately 2 million Americans who are unable to speak or who have severe communication challenges. We know that there is a huge shortage of trained personnel. We know that there is a need for guidance for interdisciplinary teams and other stakeholders and that intervention and support for this population needed to include foundational beliefs that are evidence-based that would guide practice. So again a lot of concerns that individuals with severe disabilities that include intellectual and developmental disabilities and include autism are often left behind in intervention. And we know that particularly in the adult world once they leave the service system of public education these folks are particularly needy. So there is a whole host of evidence that individuals with intellectual disabilities are at the greatest risk for victimization. If you haven't read the book Ghost Boy I encourage you to read it and understand the victimization that he went through particularly when it was presumed not only did he not have a voice but that he did not have cognitive level that would enable him to communicate the abuse that he endured. These folks that we're talking about here may or may not be intentional communicators as a result they may be using a lot of non-standard communication which requires more from the communication partners. And they may not be considered good candidates for intervention to improve communication. And in fact unfortunately to this day a lot of speech pathologists more than I care to admit look at prerequisite cognitive requirements before considering individuals with severe disabilities as candidates for an intervention to improve communication. Now as I mentioned before the NJC is interdisciplinary because it is important that no one disciplines own communication goals objectives and interventions. So I was delighted just a couple of weeks ago along with the representative Judy Schoonover from the American Occupational Therapy Association to present at their national conference in Philadelphia. And I believe that PowerPoint has been posted on the NJC website. It's an excellent PowerPoint because it includes a message through many slides and reference to the AOTA's principles about why OTs need to be engaged in supporting communication. So the NJC represents all these other disciplines but finds the common ground of where these different disciplines should be uniting on behalf of people with severe communication challenges. So it is quite unique both in the interdisciplinary nature of the organization the lifespan view and again the focus on individuals with severe disabilities including and especially those with IDD. So some recent work well at least the past 15 years or so of the NJC as I mentioned the first Bill of Rights was one of the first accomplishments of the NJC before the turn of the century. So in 2002 they came out with a very strong eligibility statement addressing the fact that eligibility for services should be based on need and that and not on other kinds of arbitrary criteria or prerequisites. So I know for me when I was doing more direct service that it was very important even I knew this I often referred to the NJC as quote a higher authority. So don't just believe me Amy Goldman SLP but here's more credible maybe more credible and evidence-based work from a national committee to support my position regarding eligibility. They've done some mega analysis so for example a review of intervention studies that found that positive change can be made in the communication behaviors of individuals with severe disabilities actually regardless of their age. So again sort of debunking this prerequisite eligibility based on age etc. In 2011 there was a conference that addressed the challenges that confront researchers and there are some great materials still online and the URL is up there in the PowerPoint and Kathy you can feel free to disseminate this PowerPoint to the attendees and in 2016 we published the revised communication bill of rights and here it is. I believe that Kathy did distribute this to you already. This is available for downloading at the NJC website. Again that's asha.org slash njc. This is the pretty version. The original version appears in an article by Brady at all that was published in 2016 in the American Journal on Intellectual and Developmental Disabilities and that citation is on the bottom of the suitable for framing NJC. So now I'm going to do a little deeper dive into some of the changes in the 2016 NJC Bill of Rights. So and we'll call that for short the CBR. So one of the things that there was was a reordering or in my view a reprioritization of some of the particular elements of the Bill of Rights. So number one and this is I think why we all use or how we all use communication first and foremost and that is it is the way that we interact socially the way that we maintain social closeness and the way that we build relationships. So part of what this reflects is the ICF Biosocial model. Again it highlights how important communication is and it also recognizes that one of the key reasons why communication skill building is important is to promote inclusion in the community and across the lifespan. So I believe requesting was number one and it is now number two. So you all probably know that this is the most frequent intervention target. However we would all acknowledge that if the only thing our friends did with us was to request we would not necessarily want to continue interactions with those folks. So really again the communication Bill of Rights as being a tool to make sure that first and foremost is the importance of social interaction and relationships. Maybe requesting should have been pushed even further down on the list but certainly it is important to be able to communicate if you value or are striving to support an individual in self-determination. And person-centered planning is a very important tool to help to identify what those desired objects, actions, events, and people are as well. So refusing and rejecting, rejecting has been added to the revised Bill of Rights and it adds choices. So here's an interesting aspect of intervention. I remember a young man many years ago that I worked on providing him access to AAC and I did some follow-up oh about six months after I was just a consultant so I came in got them on their way and then withdrew and let the local folks take over. But I spoke with his mom and I said you know how's everything doing with Doug and she sort of gave me a okay and I sent the reservation in her voice and I said well tell me why I'm hearing that concern in your voice and she said well Doug used to be so easy and now he's like telling me no all the time and I'm like yay Doug go Doug you know but but certainly the ability to refuse or reject is powerful and it is something that people with complex communication needs may not have had accessible to them or they may have been expressing it in ways that were less than satisfying. So again the Bill of Rights recognized that it is important to understand behavior behavior as having communicative meaning in communicating refusal or rejection. The right to express personal preferences and feelings and again we're highlighting the fact that your assessment and your person-centered planning process should include a way to inventory what these personal preferences are and again we're focusing on function not just form and it may mean that we have to improve the partner responsiveness to feelings, the right to make choices from meaningful alternatives. And so the language in this particular right has been changed a little bit from the right to be offered choices to really focus on the person who is making the choice. So the person has the right to make a choice and here we have to as interventionist make sure that there are authentic opportunities for choice making. This one is new and it's like one of the things that really brought home to us the need for the update and that is recognizing that communication is way more than requesting, way more than rejecting also it's the right to make comments and share opinions. This is difficult to establish particularly for people who've never even had the opportunity for the first two things but it clearly extends the purposes and functions of communication. It is one of the ways that we express ourselves and so is a totally appropriate intervention target. Again drawing on my experience as a clinician I remember being in a classroom with 10 kids, three teachers, one teacher and two teacher assistants. The students had severe disabilities and they were finger painting. You can imagine the scene. So one young man was finger painting and then proceeded to paint himself. He was using orange, paint himself and anything that was not nailed down. But what I saw was the teacher take him and bring him physically over to the sink and she was just making sounds like oh don't touch me you know that kind of thing. Never once, never once did she say you're orange or provide you know and we know so much about modeling. So if she wasn't commenting how could we expect the people that we work with to comment? So it would have been an ideal opportunity to teach him how to make a comment at the very least you know dirty even if orange color wasn't an appropriate target wet dirty etc. The right to ask for and give information and that includes information about changing changes in the routine and environment. If any of you have ever been unfortunately hospitalized you know that one of the things as a patient is wanting to know what's going to happen and what the people that we work with to be able to ask for and an appropriate hopefully appropriate form information as well as for them to give information about their state very important. And again this is all about extending beyond requesting and provides an active role for the individual. The right to be informed about people and events in one's life. This is new in our revised bill of rights and again it supports the role of the communication partners in providing appropriate information even though we make such assumptions about the capacity of people with severe intellectual and developmental disabilities to understand. So again here some support for the role of the communication partners and what we need to be doing. So another right is the right to access interventions and supports so that language supports is new and there's an implication that those supports are evidence based. Our communication acts acknowledged and responded to and again this is I think what all of us hope that when we communicate what we are communicating is acknowledged even when the desired outcome cannot be realized. So even when somebody is gesturing madly to the door but it is not time for them to leave or they cannot leave or the weather indicates they can't go outside for that communication to be acknowledged and responded to and not ignored. Another right is to have access to functioning AAC and other AAC devices and services at all times not just at communication time or circle time. Now the next data in the U.S. there are about 35 states whose vision or department of developmental disabilities use a common quality assurance data tool called the national core indicators. Very very interesting and you know if you google national core indicators you'll see all that data annually can break it out by state you can see the kinds of questions that are asked that have a big focus on self-determination and inclusion and also some civil rights like the right to have private telephone conversations. In Pennsylvania which where I've done most of my work we have a program called independent monitoring for quality I am for Q for short where we've added some questions and the I am for Q survey in Pennsylvania is conducted with over 6,000 recipients of developmental disability services a year so it's a pretty robust sample and what we have found over the years with really really persistent like maybe it changes 1% 70% of those who report not communicating via speech do not have access to a formal communication system. Wow so this is very dismal and you know reflects several challenges in the service system especially services for adults with IDD. Amy you're making my illusion that things are much better in the states go away sadly. Well I'm sorry to depress you it's probably better for school age children right but when the when you're talking the adult service system the communication supports the funding for communication supports is not as there. Okay one of our other rights is the right to access environmental contacts interactions and opportunities and the additional language that is added in the revised bill of rights is these contacts interactions and opportunities to promote participation including opportunities with non-disabled peers. The next right to be treated spoken to with dignity and addressed with respect and courtesy hopefully this is not new to any practitioner and it's not new to the communication bill of rights so to be spoken to directly and not in the third present when in the third person when the individual is present and culturally competent interactions so to have clear meaningful and culturally and linguistically appropriate communication with communication partners. And this is very interesting and it can be challenging at least in much of the adult DD service system in the U.S. because of wage issues many of the direct support people are themselves from minority cultures. And that's a challenge not to manage for the individuals with DD themselves who are from diverse cultural and linguistic communities but certainly that's a clear right. So the implementation of the communication bill of rights is the next challenge it's one thing to put it on paper but we know to make it a reality it's very important to include adaptive functioning within the ID definition to utilize the ICF framework to increase the knowledge of different cultures and adapt assessment and intervention to conduct to use dynamic assessment procedures to continue to research and identify effective strategies to change the behavior of the non-disabled communication partners. I'll tell you in my knowledge in my experience it is way easier to change the focus and change the behavior of a person with disabilities than to change that of the communication partners. It is important to continue to focus on meaningful contexts and routines and functional outcomes to move beyond requesting to increase research in the area of comprehension and I think this is clearly an area where more work needs to be done and I venture to say that we underestimate both the existing degree of comprehension among people with severe communication disabilities and we don't know enough about the role of augmentation to improve comprehension. Of course we also need to continue to enhance the role of literacy and identify effective practices. We need to maximize all tools both generic and specialized technologies. We need to look at interprofessional practice through interprofessional education on the pre-service level. Of course to me that's a big challenge since people in their pre-professional training as SLPs don't get enough focus on this. We have to hold dear and value self-determination and the right of all people to affect their existence through communication. So this is another declaration of rights for you to take a look at. This is the Coleman Institute on individuals with cognitive disabilities and they have a declaration as well and they encourage both organizational and individual sign-ons that you can sign on on their website but it's just another resource that this while of course communication is involved it also looks at communication vis-a-vis technology and information access. What I don't have because I've used most of this presentation in the US and the US isn't a signatory is to encourage you to look at the UN Convention on the rights of persons with on the rights of persons with disabilities and you will find if you were to endeavor to do a crosswalk I think that you would find many of the communication bill of rights items are in the UN Convention. And I'm going to say just for notes I lost your coffee I lost your sound. Oh sorry I was going to say just for people's awareness Canada is a signatory to the UN Convention. So I think that's something we might need to spend some time on. Yeah leverage leverage that. Yeah you bet you bet yeah. So as I mentioned before we have a website that is hosted by ASHA and it has lots of resources that you will want to explore. So other NJC initiatives is the NJC meets face-to-face twice a year and last year we looked around and we were like we all have gray hair. So we have founded the NJC network to encourage the next generation of advocates and researchers or early career folks to promote the communication bill of rights to help direct where the NJC does its work. And some of that comes from the NJC knowing what the field challenges are and for network members to contribute to the body of knowledge. So coming soon are going to be some e-modules so those of you who are familiar with the work of Karen Erickson may know that with a grant that she had she has done some excellent modules that are child based student based to train educators on being aware and sensitive to an understanding of the communication of students with severe disabilities. So the NJC is adapting those modules to address similar issues regarding adults. So we'll be looking at focusing on people of all ages with significant disabilities and their communication partners. One of our recent initiatives where we are continuing to do more work is with addressing myths and misconceptions about communication and adults in particular with severe disabilities. So stay tuned for that. Again there's recent research that supports the efficacy of interventions and communication supports even with adults with severe disabilities. So I mentioned we do presentations at all kinds of national conferences, advocacy, and follow us on Facebook. And here's the article. You might find the article useful and it's where the National Joint Committee lives. So that is the end of my slideshow and I'm sorry I took up so much time. No, that's great. That was perfect. That was just perfect, Amy. Thank you. I'm going to maybe ask Ross to give me presenter status and also I'm just going to take that little minute and pause to see if anyone has any questions on what Amy's talked about or what yeah, what we've heard so far. You've got presenter status. Yeah, I see that. Thank you. I'm just remember how to yeah, I'm trying to do a pause. I'm trying to do a lengthy pause where I don't fill the pause with my own stuff. So anybody have any thoughts, questions, comments? A couple things that came up for me and while I get people you can put in the chat. Maybe Ross, you can watch the chat is the importance. I mean Amy, our group primarily is focusing on students but you know it's important I think for us to think really that our students will become adults and we need to be cognizant of the challenges that are still all too real for adults with complex communication, especially adults who have intellectual challenges as well. So that's a real takeaway for me. Yeah, let me just say a few words. So this is definitely a real challenge at least in the US. We call it transition and that unfortunately transition planning all too frequently does not include how we're going to transition the use of a device if there's a device in play, how we're going to make sure that the adults, their communication partners in the next settings are prepared to use and maintain the device including upgrading vocabulary. So if your folks are working with secondary students so please keep that future environment really first and foremost in their mind. Actually if you want Kathy, I have a little checklist I made up on things to think about for example does your student or parent because the parent is likely to be a constant have operational competence. Okay, do they know how they got the device? If the device breaks do they know what to do with it? So remind me and I will send that to you and you are welcome to distribute it. Amy, can I just a couple of questions have popped up. One says does your state offer universal access to speech generating and communication devices for children or is it a candidacy model? So it is for school age kids it is up to the individualized education program team but certainly there and and if the team determines that the student should have an AAC device and that need is put in the individualized education program it is the responsibility of the school district to provide that device. So here's the rub if the school district sends their money on the device they can choose to keep it when the individual graduates but one of the reasons why if you followed the healthcare debate in the U.S. at all many kids with severe disabilities receive Medicaid and Medicaid may be a funder of devices and if it was Medicaid that funded the child's device then in fact it would graduate with the child. So I hope that helped. Now the reality is that not all school teams jump on board we have a lot of students who are let me say this politely stuck with low-track systems because there is a view that because they are low functioning that's all they can benefit from. Yeah yeah and and I mean the question I didn't give you very much context about Alberta but we do have to our health system provisions for AAC from cradle to grave but it is a matter of you know doing matching and many the same things there but we at least do not have this fall off point you know that the device it follows the the person and the healthcare system you know not that it's perfect by any stretch we've got lots of things to work through but it certainly is it's not it some schools do fund devices especially iPads now but we do have a provision to to do something provincially so which yeah which is which is great and it hasn't been around for that long. The other thing that I'm going to just pick up a couple things that you said and then I'm going to talk really briefly about some of the ways that we've used it. I talked about a device not only when they're doing communication time but circle time and I might add I'm looking at Karen and Karen Erickson's literacy bill of rights I'm almost thinking they need an education bill of rights that communication that they need a right to education beyond circle time. That circle time just particularly challenged by that these days so anyway it was lovely to have you go through them and to share the changes I think that's really important and to help us focus a little bit I'm just going to run through briefly now how at least those of us who are part of the COP have used them. Last fall we had some face-to-face meetings with people in two locations and shared actually the article Amy so there's a few people and I do love that article there's a few people who have had that and we had some dialogue around that. I also unpacked a little bit but I thought were some of the key messages that people would could be could be drawn from that article so this whole overview of communications for individuals with severe disabilities some good guidance in terms of thinking about assessment and you did touch on that today a little bit and then some also some important guidance in terms of intervention and for me the other really important piece that you highlighted is that this is a team this is teamwork and we really truly need to bring the team together and it's from bringing that you know you focus particularly on OTs on absolutely for me my my real important passion is to make sure that we have teachers who really fully understand and because at the end of the day they're there all the time right parents and teachers parents primarily but you know in terms of classroom environment so I was really happy that you talked about team and that we and we talked about that a little bit we did a little bit of a compare and contrast although was you did a way better job of coming to contrast of course and then what we what we did do as a discussion point was talk about three things that people also say what are you currently doing to to make those bring these rights to life in in with the kids in the classrooms that you're working at how might you further operationalize these some general thoughts and challenges and I have all of these lovely responses which I haven't collated yet and it's been months but it was a really good dialogue I think and maybe some people who were there might want to share your thoughts again there's room for other people's voices here than mine and about how that work went and felt for you but it was certainly very rich dialogue and I looking you know paying attention to what's really happening in your environment right now was really I use looking for people that I'm also going to share when I do workshops now and there's a lot I tend to do and I know people around on the online are doing workshops all the time as well I ask people to just take a little look at which of the rights really jumps off the page at you and an interesting thing for me it and I'm happy that it does jump off the page is number 14 the right to be addressed directly and not spoken for or talked about in the third person up all the time and I'm and I'm really you know it's it's two it's a double-edged you know oh really do we really have to talk about that so much and then the other hand because the the lived experience that I have in classrooms is often these kids are spoken about like they are they are not you know that they're they're not there they're not they're not and you know it really gives for a great dialogue around the fact that we we need to expect that children are understanding everything you say and we cannot that's just incredibly bad practice but it seems to be and you know what and I I say I have been guilty it's not it's not I have been guilty of doing that too but now you know I really not only trying well I make a point of catching myself of them going there and also just to try and help people redirect that the child is present and you know the other place that it's come up in my experience is when kids are in hospitals and don't have any communication systems and the way that doctors and nurses talk in front of them and one young woman who I know who has rats talks about the fact that they're talking about some significant things in her prognosis and she's right there and you know it's it's a it's a yeah that one just really it's a really profoundly important right and and it both I guess it both shocks and heartens me that people say wow we need to attend to that we need to do better around that so um yeah so those are and in always having a dialogue around so what jumps out at you and and having a launching off point has really been um provided in my experience a wonderful rich conversation so I'm hoping to actually maybe write up that those things that people talk about and share them out and I think it'd be really it was great um it's just that big thing called time that gets in the way um but as I said always they're um they're great now the other person somebody else said to me I asked them what the difference between the two were and said that one said oh these ones are way better because they have pictures so so is there any uh anybody doing the work on uh symbolating the the communication the new one do you know is that is that the is the first one that one of the pictures is the 1992 one and right right so first we're trying because because the communication bill of rights were published in an article yeah we have permissions that we need to get the first thing that we're trying to get is permission to translate them into Spanish and French bravo I've already been asked about that actually so that's fantastic because we need them also I'll say fabulous okay but I I think it it might have been scope that is the picture yeah yeah so maybe we should ask them there you go very nice I feel I can take that on and I do that for sure um I'm going to sort of close with a couple of um housekeeping things but I'm just again going to pause anything on the chat anyone else oh some people are saying yay for translations um anyone else have any thoughts or questions for Amy before we uh say thank you and let her go the chat window has been quiet okay all right that being said I'm going to do one little advertisement Amy talked about Isaac and you Zach and um I'm going to encourage people they are doing um last Thursday this happened and there will be another one in May sorry I didn't have the right thing in May but um you Zach is doing this lovely thing called AAC chat on what would that be the second Thursday of every month and um I've been involved I've been as much as I'm a Twitter person which I'm really not I've been trying to participate a little bit and um things that happen on you Zach are also open to Isaac Canada members so um I would encourage you this is one more reason to join Isaac Canada and also to think about joining the the chat I will try and remember to send out the date in our communications and um I know that Amy has done lots of important work with you Zach so we're going to be supporting them as much as we can yeah we have a we have a bunch of archived webinars oh okay okay very good all right remind me and I'll send you the direct link love it we'll definitely do that absolutely thank you so very good and then also just and I don't have the pretty picture I'm sorry um I am actually at a conference in the States for those of you don't know so I'm kind of um Kelly Fauner next Kelly is going to be doing part three in the environmental communication training webinar so um for those of you who haven't caught up with parts one and there on the ERLC website and for those of you who maybe want to refresh her before Kelly does this in May you can do that and otherwise she's going to be closing the loop on this work with us which is absolutely fantastic and um Amy thank you so very much for spending this hour with us it was most enjoyable and most informative and um I know you're a busy lady so um yeah but we will take your work forward and try and spread it around and make sure that those communication bill of rights get um operationalized and thought about in cross operator and I know there's lots of wonderful people online tonight who will take that work further forward as well so thank you so much thank you all right any seeing no more oh hang on been all right oh there's something about working on the sound of that excuse me Kathy because many of the videos that were on the ERLC website all right all right well thank you okay good night all thanks everybody thanks