Apr 14, 2021
During this episode, Ellen Bernstein-Ellis, Co-Director of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, talks with Bob Williams and Tauna Szymanski from CommunicationFIRST.
Bob Williams, Policy Director of CommunicationFIRST, helped to co-found the organization in 2019, after retiring from a distinguished four-decade career in federal and state government and the nonprofit sector, most recently as Director of the US Independent Living Administration at the US Department of Health and Human Services. He is a nationally recognized leader on policy issues relating to supporting people with the most significant disabilities to live, work, and thrive in their own homes and communities. For over 60 years, Mr. Williams has relied on an array of augmentative and alternative communication (AAC) strategies, including a series of speech generating devices over the past three decades. He lives with his wife in Washington, DC, where they enjoy visits with the grandkids, walking along the riverfront, Netflix binges, and all things Springsteen.
Tauna Szymanski became the Executive Director and Legal Director of CommunicationFIRST in 2019. Previously, she spent twenty years working on climate change law and policy, including 13 years at an international law firm in London and Washington, DC, where she volunteered and represented clients pro bono in disability rights and inclusive education matters. Ms. Szymanski has graduate degrees in law and public policy. She grew up around the world as the child of US Foreign Service Officers and is multiply disabled.
In today’s episode you will:
Edited show notes:
Greetings to our Podcast listeners,
This is Ellen Bernstein-Ellis, your host today, and you’re listening to an updated version of episode 68 with CommunicationFIRST. Let me share what happened to the original podcast because there's a valuable lesson in this story. Bob Williams, one of the guests that you’ll be meeting shortly, uses an assistive device to speak. He is indeed an eloquent and powerful speaker, as you will soon hear.
Bob spends considerable time preparing for interviews by prerecording content on his device since real time responses can be time consuming. However, as a matter of principle, Bob always opens his presentations by typing in real time in order to educate the public by providing some insight into the fuller experience of being an AAC user. The remainder of his interview responses are played at a more typical speaking rate.
Unfortunately, because I didn't provide explicit instructions to our podcast producer, Bob’s response in that section of the podcast was edited from four and a half minutes to 30 seconds to eliminate the audio lag. I failed to catch this unexpected revision in the final copy before it was posted.
I want to thank Bob, and Tauna, our other guest, for bringing this to our attention so we could redo the episode and restore his original response as it was delivered. I sincerely offer my apologies and appreciate their gracious understanding as we worked together to resolve this issue. Thank you too to our podcast producer for quickly responding to our concerns. To our listeners, Bob’s first response is a small but important window into the effort it takes to be an AAC user and also how to be a respectful listener and effective communication partner.
I found Bob and Tauna's interview profoundly impactful. They are passionate, expert advocates, as their mission states, in advancing the rights, autonomy, opportunity, and dignity of people with speech-related communication disabilities and conditions. Be sure to check out the CommunicationFIRST website at www.communicationfirst.org
Welcome to both of you today. Thank you for being here Bob, do you want to add anything to your impressive bio? What brought you to CommunicationFIRST?
I want to explain to our listeners that for this response, you're going to respond in real time, which means the listener is going to hear some typing as you compose your response. Thank you, Bob.
Thank you. Over 50 years ago, my parents, brothers and sisters, and I started to figure out ways I could express myself and that is why we can have this conversation. CommunicationFIRST is committed to making certain that all children and adults, and older Americans with disabilities that need ACC get that same chance.
Bob, you and I spoke before the interview of how important it was to actually demonstrate to show how laborious and effortful it is for people with communication disabilities to communicate effectively, and to how important is for the partner to be patient and develop good listening skills. And you're actually the one who pointed out the corollary with individuals with aphasia, who may also need the partner to give them more time and have more patience so they can participate fully in the conversation. So thank you for sharing that and making sure that lesson is out there today.
I'd like to share my first lesson about being a good communication partner for someone using AAC, because I set up our tech meeting, and learned the hard way that the password was actually a barrier to you joining our meeting. By the time we figured out the problem, there just wasn't time for you to participate because you had another Zoom meeting you had to attend. And that one was at the White House, so that meeting won out. It left me totally impressed, of course. I decided this was a good lesson to share with our listeners. I've learned a lot in preparing and appreciate this honor of working with you for this interview. Thank you.
Bob, how do you get ready for something like this that involves prepared and live responses?
I prepare most of what I am going to say in advance. Having worked with members of Congress, a cabinet secretary, and others who place a high value in brevity, has really developed my skills. To do this, I cut and paste, and repurpose as much as what I can, but it is time intensive. For the last 30 years, I have composed everything on my computer and transferred it to my speech generating device, which has advantages and downsides. Now, I am starting to experiment with the hybrid approach. You heard what I spelled out on my device. And what you are hearing now is the read aloud feature which is included in Microsoft Word. That voice quality is better and it cuts out the transferring and other hassles. Once I get the routine down, I am confident it will improve things. Responding to things in real time is never easy. It is just something you deal with as best you can.
Bob, before we started recording, you explained that there will be some pauses between our questions because you have to physically reposition the cursor to read your next response. I just want to give the listener a heads up that they may have to wait a moment. Getting back to what you just said, Bob, what are the implications of what you shared for the people we work with who have aphasia?
If there is anything I want you to take away from what I say, it is this, the people you work with are making huge motoric and cognitive effort to express themselves and to be understood, regardless of whether they are using a speech generating device or not. The work they do is often Herculean. But many never realize that and view individuals with aphasia and others with significant expressive disabilities as less than, as having little to no human need, ability, or right to express themselves and to be heard. Because you and I know better, our most fundamental duty is to shatter this narrative. The idea that we can acquiesce and be complicit in letting people live incommunicado must become morally repugnant.
Bob, that gave me the chills. It's so eloquent and so beautiful. Thank you. I think it leads us to the next question. It’s about the passion you and Tauna both share for communication access. What are the mission and values of CommunicationFIRST?
We often get asked how we can expect to defend and expand on the civil rights and opportunities of people who seem to have nothing in common, except, of course, that we are voiceless and powerless. I was among those who was asked much the same question about what was then seen as this pipedream called the Americans with Disabilities Act. It is true we are diverse demographically, in terms of the disabilities and conditions we have, when and how we acquired them, how we communicate and a host of factors.
But here is what unites us. Like all people, we have the same intrinsic human need. The same human capacity and the same inalienable human and civil rights to effectively express ourselves and to be understood.
Recognizing these truths about ourselves, that there is strength in our numbers, and recognizing we have rights and must demand them. These are the essential building blocks of CommunicationFIRST and the human and civil rights and liberties movement we are forging.
Thank you, Bob. My next question is for you, Tauna. Who do you serve? And what is your connection to aphasia?
Thank you, Ellen, for the invitation to join your podcast today. This is actually our first podcast, so we're having a lot of fun with this. As Bob suggested, CommunicationFIRST is a very broad and diverse organization in terms of the group of people we seek to represent. So, the one commonality is that we will seek to advance the interests and the rights of anyone who cannot rely on speech to be understood, and that includes people who were born with a speech disability, and those who acquire a condition or disability later in life that makes speech communication difficult, and that includes people with aphasia.
I'd like to hear a little more about the history of CommunicationFIRST.
Sure. Well, as you noted earlier, we were only founded about 18 months ago. We publicly launched in October of 2019. It really came about over the prior few prior few years, as we realized that there were well established organizations. effective organizations, that represented people with the other two types of communication disabilities, vision and hearing disabilities, but strangely, not a single organization that really worked on the third type of communication disability, speech related disabilities. So there were, you know, there are some organizations for professionals and there's organizations that sort of worked on broader issues impacting folks with intellectual and developmental disabilities, some of whom have speech related disabilities, but no one who's really focused on the rights and interests of this large population, which is just equally as large as those other two communication disabilities. It came about because of the realization and the fact that the issues are just as intractable, if not more so, than for the other two populations of people with communication disabilities.
I'm really grateful that you collaboratively started this organization. I didn't realize it was a new one, because you have already accomplished so much, just looking at your website. How are you seeking to achieve your mission?
Well, it begins like everything else involving changing hearts and minds. Creating greater justice must begin in conversations like this one. Most of all, it takes creating the opportunity, spaces, and support for more of us who need AAC to get to know each other. And to recognize that we share not just the same kind of challenges, prejudice, and discrimination in common, but that the civil rights, accommodations, and support also are largely the same. And we share a common responsibility to each other to bring such changes about.
Thank you. You are an eloquent speaker. Can you explain why CommunicationFIRST views this as right as a civil rights challenge?
The National Aphasia Association 2020 survey on public awareness surveyed 1001 persons asking if having a speech disability is a sign that someone has an intellectual disability. Fortunately, 58% of the respondents said they either strongly or somewhat disagreed that is a true statement. But 42% said they either strongly or somewhat agreed with the statement. You and I know there is nothing soft or benign about the bigotry of low expectations. Or of social isolation, institutionalization and a lifetime incommunicado. We all have witnessed its absurd and horrid injustices. It is time to call it what it is. And to end it. This is why we do this work and need allies like all of you to join in.
We have to work together. That is absolutely right. We're always stronger together. What is something big that you've learned during COVID, about healthcare ACC disparities?
I can try to start out with this one. So as I mentioned, we launched only six months before COVID broke out. So, we had to very quickly pivot our plan or rollout for the first year to addressing what we quickly realized would be a very significant issue impacting our population-- one slice of which we knew would be these new no visitor policies in hospital and congregate care settings.
Especially because we know that virtually everyone in our population who has expressive communication disabilities needs some kind of human physical support in order to communicate. After everything shut down, and hospitals started implementing these no visitor policies, we issued toolkits about rights. Then we started getting calls about this issue and, in the course of doing that work, I personally have really come to appreciate and develop a much broader and deeper understanding of what communication really is and how much broader it is than just speech and hearing and vision.
Also how individualized communication and communication supports are. That's something that's actually been a personal blessing to me and in the work as we started with this organization. It's been an unexpected gift, really.
Thank you for sharing that, Tauna. And Bob, do you want to speak to something you've learned during COVID and health and AAC disparities?
We have known about the deep disparities in health, education, and economic well-being that are part of the everyday lives of African Americans and other people of color with and without disabilities long before the pandemic and the vile white supremacy of the last several years. Because of the work of the National Black Association for Speech, Language and Hearing, as well as researchers and practitioners like Dr. Charles Ellis, and others, we are learning more. Not just that black, indigenous people of color and those who are multilingual are more likely to acquire more significant degrees of like aphasia, Parkinson, TBI and early onset disabilities like cerebral palsy, which require them to use an array of communication and other services and supports. But they also face disproportionate barriers and discrimination in accessing the services, AAC, and assistive technology required to each lead a decent life.
Absolutely. And I'm admirer of Dr. Charles Ellis's work as well. So Bob, what needs to happen to get policymakers to understand and address both the systemic barriers as well as effective practices that research is identifying? And how can we help to elevate the need for action.
I mentioned Dr. Ellis, a leading expert on aphasia among black people and the director of the Communication Equity and Outcomes Laboratory at East Carolina University. Over the past several months, I have read his work as well as that of others doing similar research. And I think it's accurate to say we know and are learning more about what inequity in access to AAC and communication supports look like, as well as its devastating effects it has on people. We must now create urgency around what communication equity must look like and what we must do to retain it. In January, we prepared and were joined by 47 other organizations in submitting a Communication Equity Call to Action to provide the Biden administration. In it, we call on them to take concrete actions to create equal access to AAC, regardless of one's race, disability, age, language, or other status. Check it out on our website. And we will be glad to talk to anyone who wants to become more involved in our efforts.
Thank you, thank you, for the work you're doing. That leads to the topic of what introduced me to CommunicationFIRST as an organization this summer in the first place. Could you please tell our listeners how you met Patient GS, that patient who's actually behind the June 2020 ruling to protect the rights of individuals with communication disability to have access to their communication support partner in a hospital setting, even during COVID?
As I mentioned earlier, in March of 2020, we issued a COVID-19 Communication Rights toolkit, which was designed to be a way or resource for folks who were going into the hospital due to COVID, who needed to ensure that they could access the communication support they needed in that environment, even if that communication support needed to be another human being.
So in other words, it was an accommodation request under disability rights laws for someone with a communication disability to be provided a reasonable modification to those no visitor policies and to other non-human communication supports like AAC and other communication accommodations that might be needed. That had come out in late March and I believe it was about two weeks later, I got a cold call on our main line from a woman in Connecticut whose mother had just been taken to the hospital less than 24 hours prior by ambulance. She was a 73 year old woman, GS were like initials to keep her identity confidential, but she's since come public. Her name is Joan Parsons, and she had acquired aphasia, I think 11 or 12 years prior due to an aneurysm and she was going to the hospital for non-COVID-related reasons. Her family, who had always accompanied her in the ambulance on necessary hospital visits and had remained with her in the hospital to ensure that she could communicate and understand, were prevented from doing so.
One thing led to another and we attempted to advocate and ultimately we needed to file an administrative complaint with the Office for Civil Rights at the US Department of Health and Human Services and something we did with Disability Rights Connecticut and a few other disability rights organizations.
Can you can you share a little bit more about what the ruling entailed?
We filed that complaint in early May and very quickly the Office for Civil Rights (OCR) opened up what's called Early Case Resolution procedure, which all the parties have to agree to. The complaint was both against this individual hospital, which was Hartford Hospital in Connecticut, but also against the state of Connecticut for not having a statewide policy that reminded hospitals of this need to include exceptions in these no visitor policies for people with disabilities who needed in person support. It was sort of a two tiered complaint. Over the course of the next month or so, OCR, and Connecticut, and the hospital, and the disability groups, negotiated resolution to those complaints.
Ultimately, the resolution was an agreement for Patient GS, to be ensure that she could have that in person access. She was actually still hospitalized, after getting diagnosed with COVID, and was in the ICU for this entire time, six weeks. She was still in the hospital, I believe, that day we signed it. She ended up being released later, but we had resolved the practical issues earlier so she was able to be supported.
But the broader results of this complaint was that the state of Connecticut issued emergency regulations that essentially were a policy that laid out the law and said, yes, people with disabilities are entitled to have a support person present if needed, despite hospital visitor policies. It laid out a lot of the details about PPE and safety precautions that need to be taken. It wasn't a lawsuit, but rather, it was a decision that was endorsed by the Office for Civil Rights. It became a national precedent and an indication of what the federal government was saying that, yes, this is what needs to happen.
After that, we didn't have a whole lot of issues. We would just point people who were calling with these issues to that resolution. That was the backbone and that came out June 9 of 2020.
That had really widespread impact that summer. I saw the posting, that's how it came to my attention. We were cheering because for us, that's landmark, as protection for the people we work with and care about. They we're telling us stories of being so scared about going to the hospital and not being able to communicate.
Not only did you have that landmark ruling, but you also created this Hospital Visitation Framework document. Could you please speak to what the main criteria are for evaluating if a hospital policy is discriminatory? Let me share with the listeners one quote from the document: “Doctors have an ethical obligation to seek and obtain informed consent from every patient, something that cannot take place, if the patient does not have the tools and supports necessary to become informed, ask questions and make decisions and communicate consent. No visitor policies pose serious barriers to individuals with disabilities who require in person supports.” Could you explain a little bit more about the hospital visitation framework?
Sure. Together with the other disability rights organizations that we worked with on this issue, we put together this document, the Hospital Evaluation Framework. It was put together to compile best practices really, to highlight some of the better state policies and hospital policies out there in terms of the detail.
One of the things that I never thought I would, a year and a half ago, be looking at were these nitty gritty sort of details like under what circumstances can a support person eat and use the restroom while in the hospital? This is really what a lot of these negotiations come down to is that kind of detail. States still are all over the map with their policies and some states don't even have policies on this issue. And hospitals are all over the map, especially in states that don't have policies. We thought it made sense. I was on a daily basis getting calls on these issues and coaching folks in various states here are the sorts of things that you need to be thinking about.
As we were negotiating with OCR and Connecticut about elements that are important to put in these policies, this (framework) was the compilation of a lot of these issues. And we wanted to make it helpful for states and hospitals to adopt comprehensive policies that ensure that patients with disabilities would be able to be supported and have equal access. Part of this document reminds folks of this ethical and legal obligation that healthcare providers have to ensure they're seeking and obtaining informed consent from their patients. So if a patient has a communication disability, they're still entitled to be provided with informed consent.
Part of becoming informed is being able to understand what is being presented in terms of treatment options and also being able to ask questions about those options. And then, of course, providing that consent. Much of what we've had to do in terms of advocating on this issue is reminding healthcare providers that you still have to do this, right? Just because that person doesn't have the communication tools right now, you have to provide those (tools) to ensure that they can have that opportunity. And in the case of aphasia, and with Patient GS, a lot of what we were advocating for was reminding (providers) that Patient GS has aphasia and she can understand a lot, but sometimes she needs help with rephrasing. The only person that can really help with that is someone who knows her and knows the background of how she understands and expresses things. And how she can be asked questions in a certain way to ensure that she is answering in a way that is going to lead to an agreement, or decision, or consent.
This Evaluation Framework document methodically goes through some of these elements that we found were really essential to have in some of these no visitor policies. Including, is there a requirement in the state policy for a hospital to follow the policy? Some of them suggested it was optional. Or, what kind of facilities does the Framework cover? Does it just include hospitals? Or, does it also include congregate care type facilities, long term care facilities, skilled nursing, etc.?
Some were very selective about the types of disabilities that they listed and yet you don't need to have a certain type of disability to qualify under the ADA for an accommodation. So it goes through some of that. What we also thought was helpful would be to footnote each of these with real examples from states, including the language that they've used in their policies, to address each of these points. You can see the variation in how some states have done this. That was, hopefully, a helpful resource. We've used it over time as we've worked in new states to encourage better policy adoption.
That’s a really big undertaking. And right before we started our interview, you mentioned that there's been some updates as of yesterday. Do you want to share?
Sure. This was specifically about hospitals. The Patient GS situation was really about hospital visitation. And we had been hearing increasingly from folks in nursing homes and institutions, for lack of a better term, and intermediate care facilities, assisted living facilities, skilled nursing facilities, about similar issues about people not being able to go into to visit and then to support. We always start by emphasizing that distinction between a visitor and a disability support person, because in a lot of these facilities, there is actually a legal right to visitation. But more strongly, under disability rights laws, there's this separate and independent right to effective communication and certain disability related support. There was no real guidance about those rights in these other types of settings at the time, and so we, along with several other disability and aging groups, spent a good chunk of last summer pushing CMS, the Centers for Medicare and Medicaid Services, to issue guidance on those rights in those settings.
And finally, in September of last year, we got some guidance about nursing home visitation. Then in January of 2021, we got guidance about visitation on intermediate care facilities, and psychiatric residential treatment facilities. Yesterday, just an hour after we presented about the nursing home and ICF visitation, HHS and CMS actually issued an update on the nursing home guidance on visitation and made it stronger, talking about the role of vaccinations and that sort of thing. So essentially, all of these other guidance documents include that additional language about reminding those who run those facilities that that if a patient with a disability requires an outside support person to access the services and healthcare options that are provided in those settings, they're entitled to do so regardless of those no visitor policies.
Some of the documentation and legal aspects can be overwhelming for families to navigate. That's why you put in place this COVID-19 Communication Rights Toolkit, which is very accessible. I urge all our listeners to share the link with families which we'll have in the show notes Could you explain what it is?
This was put together in March very, very quickly. It tries to simply lay out what those communication rights are in health care settings. Specifically, it includes a section about how you protect those rights and assert them. It includes links to the three different laws, which are the Americans with Disabilities Act, the Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. For advocates and lawyers in health care, hospitals, and whatever, they can click on the links to see the actual laws if they want to read them. And then it includes additional resources, like the Evaluation Framework. We included various memos and links to the guidance for state policies that we've compiled on our website. At the very back, there is something that you can actually print out designed to be a form that you present to the hospital when you're being admitted which says: here's my name, here's my emergency contact, here's the support I need to communicate. It could be this person, it could be this AAC device, I need wait time, please be patient, etc. It cites the law and asks people to put this document on my chart and you can keep a (copy of the) document. It’s designed to be used before you need to go to the hospital. We’ve heard that folks are actually doing it that way. Lots of folks have this filled out just in case they have to go to the hospital at some point. We have it translated in both Spanish and Chinese.
Maybe one of the tips for introducing this to a family, if a client has an upcoming surgery, is to refer them to this Communication Rights Toolkit, and encourage them to print out the Communication Rights form, right? Do you have any specific stories you want to share about its use at a hospital that's come back to your organization?
I haven't heard long detailed stories about its use. But I have seen on many occasions, on Facebook, Twitter and in emails, that folks have brought this information to the hospital and have used it successfully. So that's been very gratifying.
I was truly inspired and grateful for the work that your small organization has been able to accomplish during this time when so many families have spoken about feelings of loss and fear about not being able to advocate for their loved one in a situation that is already very, very scary. And it's just been compelling to see the difference that this organization has made.
I want to express my appreciation to Bob and to you, Tauna, for what you've accomplished. Thank you so much. And I hope our listeners will look at the links in the show notes to check out the Communication Toolkit and the Hospital Framework.
Also, in the show notes, Bob, you showed me yesterday that, as of March 3, you posted a video on the history of communication rights. I only had a chance to start watching it and I can hardly wait to finish it. I urge everybody to check out that video. It is going to be an amazing tool for sharing the importance and value of the history of bringing communication rights to people. Thank you for that.
As we wrap this up, when we finally did get to have a tech check after creating a second meeting without the password, we started talking about Springsteen because I saw that noted in your bio, and I couldn't resist. You liking Springsteen makes a lot of sense to me, because at heart, he is really a storyteller. It seems to me, that you too, are very much a storyteller and you understand deeply the value of being able to tell your story. I asked if you had a favorite Springsteen song that you'd like to share?
As I told you before, this is the impossible question to answer. I first heard Bruce in 1972. I believe he was the warm up act for Richie Haven. But I was too focused on the redhead college student with me to give him any notice. Soon after, some friends turned me on to the stuff he did on albums, like Greetings from Asbury Park, and The Wild, the Innocent and the E Street Shuffle. So like every old friend, we have been through and continue to go through a lot together. In trying to make sense of this world, each in our own way, trying not to be blinded by the light. And to find some ways to make things more right.
So you're telling me there is no one song?
No, but here are a few. I love ‘Jungleland’ for its artistry. As the man wails, it is a ballet being fought out in the alley. Clarence’s saxophone solo at the end always takes me places where I crave to be. ‘Racing in the Streets’ also calls out to me. It reminds me of my dad. His work ethic, his drive. The way he lived his life and expected us to do the same.
But if I really need my fix from the Boss, I listen to the ‘Ghost of Tom Joad’ and ‘Youngstown’. The injustices Bruce challenges in many of his songs are as real, if not deeper, today than ever. But so are the yearnings they inspire. That is the fix I keep going back for. Of course, I can belt out ‘Thunder Road’ and ‘Rosalita’, just about anything he sings, with the best of them.
Absolutely ranks you as a top fan. I agree with you deeply. So thank you for sharing that answer.
I want to thank both of you for sharing your
expertise today with our Aphasia Access members. I've learned a
lot. And I'm hoping that we're able to get the good work that your
organization is doing out to a lot more people. So thank you so
References and Resources
CommunicationFIRST COVID-19 Guidance
Americans with Disabilities Act featuring Bob Williams
CommunicationFIRST Covid-19 Communication Rights Toolkit