This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings
TAUNA SZYMANSKI: So the presentation we're going to be giving is called Let's Talk About Not Talking, What Does Olmstead Mean for Communication Access? I'm a white woman in her middle ages, I guess. I have short shoulder-length brown hair and my name is Tauna Szymanski and you'll describe yourself later. So on this slide, it says "communication and community are symbiotic; one is impossible without the other" and there's an image of Bob Williams and Judy Heumann together sharing community.
BOB WILLIAMS: Communication, I start all of my presentations by spelling out the heart of the matter. And to give you a small sense of what it is like to use any augmentative and alternative communication strategy or tool. And an even more minuscule but hopefully, reminder of the horrendous costs and injustice that are inflicted on countless children, women and men who continue to be systematically denied access to the AAC they need to effectively express themselves and to have any chance in life in realizing the promises of the ADA.
As well as other vital human and civil rights protections that all of us here have spent our careers, and often our lives, working to secure. I say this not to evoke pity, but hopefully, to stir you to the same rage and anger that Tauna and I feel.
Because as Anne Roberts said to many of us, rage and anger are powerful tools if we conscientiously channel them. So a large part of what we want to do today is to invite you to join us in channeling that anger and outrage. Your work arguing for the expansive ways that the integration requirement, the Olmstead Decision, and other disability and civil rights protections should be interpreted and enforced is vitally necessary. There is no question that it benefits many of our members, but I would be disingenuous if I did not add that enforcement efforts pursued by the justice department, PNA, systems, and the disability and elder law bars rarely address rights and remedies critical to people with little to no understandable speech.
So while such efforts are necessary, they are also insufficient. I will say more on why we think this, as well as suggest ways to address it in a moment.
Let me offer this snapshot of myself. I am a 67-year-old white man wearing a blue and white button-down shirt, a bow-tie and red vest. My pronouns are he and his. I was born in the late 1950s at a time when hundreds of thousands and more Baby Boomers like me were institutionalized by their parents, told by doctors and others to commit their sons and daughters, walk out and never look back. They were denied an education and worse. I have always experienced disability bias and discrimination, but escaped the most hideous consequences of it. I got involved in the disability movement as a teenager, began first as a citizen advocate, and then as a court monitor, helping people to move out of Forest Haven after college. I also worked on the passage of the ADA and as an official at HHS and SSA for not quite 20 years, among other things. After leaving the HHS in 2019, I co-founded and joined CommunicationFIRST as its policy director.
The work we do is very much the capstone of my life and career. In the interests of full disclosure, and if it is not already clear to all of you, I am not an attorney, but I have stayed at multiple Holiday Inns throughout my life.
[Laughter]
And most importantly, I want to draw on that life, my and others' experiences, as well as the knowledge that I have of the disability and social justice movements to sketch out why I find the term "unjustified isolation" that Justice Ginsburg uses in the Olmstead decision to be so descriptive of the constant and horrendous disability and intersectional discrimination our members endure. And why the corresponding duty of avoiding such isolation is vital to disrupting the cycle of injustice. I believe the research of the African American psychologists Mamie and Kenneth Clark --
TAUNA SZYMANSKI: We're going to take a quick step back and talk about the work we are doing to try to disrupt that injustice.So first, we're both with CommunicationFIRST, and this is the only civil rights organization that's led by and for what we think as 5 million people in the United States who cannot rely on speech to be heard and understood. And we're a cross-disability organization, and led by folks with disabilities.
As you might imagine, we're extremely diverse. If you know anyone who can't rely on speech to be heard or understood, there's no one diagnosis or whatever you would think of. It's all the different types of disabilities. And most of our constituency we believe up to 90% don't yet have access to robust language-based communication tools. So here's a quick graphic that we created for a project we called AAC Counts, which is trying to get the agencies in the U.S. government and states and private foundations to try to remedy the fact that we actually don't have any reliable data on the numbers of people in the U.S. who need AAC. We backed into that 5 million number by basically looking at all of the 26 different disabilities and looking at the prevalence within those communities of speech loss or speech disability.
And so this is what we came up with doing a bunch of research. As you see, people often are counted by their disabilities, but they're not necessarily counted by their communication disability. So like, for instance, in the American Communities Survey of Disability, there's five or six questions that are asked, vision disability, hearing disability, and the rest are can you bathe yourself and all these other things? And so like our community doesn't really fit in -- or they could fit in all of them, you know. So there's no accurate data in the country on this, which frustrates our work somewhat, and it also impacts, you know, policies.
How can you actually make policy if you don't know what the issues are, and what the number of people you're dealing with is? So some of the other work we've done today is actually our first, on the day we launched publicly, the first thing we did was file a lawsuit against one of the largest school districts in the country on their use of restraint seclusion. We then shortly after that, COVID started, and this was -- so three months later. COVID started and we had to pivot from meeting our colleagues in the community and introducing ourselves and everything to COVID, it was March 28th or something. We got contacted by a woman in Connecticut whose mother had to be admitted through the emergency room and they denied her daughters access to her and she had aphasia and the only people who understood how she processes language and how she expresses language were her two daughters.
And so luckily after we filed an OCR complaint at HHS and like within six weeks, there was a major national announcement about how no-visitor policies are illegal if you need another human being to communicate.
We've also had some fun with films. These are all on our website, if you're interested: See Us, Hear Us, Listen. It won some film festival awards. We've done a ton of rule-making comments and then coming up, we've got guidance or toolkit about how to have a completely or mostly accessible online Zoom meeting. So that's coming soon. We've got some access to justice toolkits coming out. We've got something on IQ testing, and a white paper on digital equity which Bob has been handling. So just to sort of ground us, most people when you talk about communication, they either think hearing disability, ASL interpreter, or speech, right? Vision sometimes is included in that, but not always. So it's really much more than that, though. So it includes receptive, both receptive and expressive communication. So seeing, reading, hearing, listening, touching, feeling is all communication.
Being able to process information is also a kind of communication, asking questions to clarify something, expressing decisions, preferences, desires, feelings, including informed consent, voting, signatures, etc. And it also includes your body communicating pain, nausea, hunger, anything. Another case we handled during COVID was a young man who had gotten into a really bad motorcycle accident and he was in a coma and they only allowed his family to try to communicate with him through Zoom or something and the family recognized a discoloration on his face and his facial expression had changed, and they kept saying I think there's something wrong with him and the nurses were like he's fine. And it turned out he had had a stroke. We used effective communication regs for that as well and it was successfully settled.
What is AAC? This term, augmentative and alternative communication often is thought of as like a device, like Bob's device, but really it's anything other than speech that can help a person be understood. So it can include no device, like gesture, eye gaze, point, facial expressions, sounds, body positioning, laughing, smiling. That would be basically how someone who doesn't have access to a language-based communication device, how they communicate. And then pointing, but what we're really focused on is making sure everyone has robust language-based AAC. So no tech or low tech or high-tech type of devices. Anything that would allow you to communicate anything you might want to in the world. And then a lot of people, like I mentioned the Connecticut case, it can also include another human being who is familiar with how that person gets things across, right? How they process information and how they're trying to express it.
And we also have a lot of folks in our community who may intermittently need AAC, it goes on and off over time. Here are just some visual examples of AAC, this old picture on the lower right is Bob using one of his first communication devices at the time. That one, the blue one on the upper right is one used right up until 1990 I think and the lower left is his wooden letter board that someone created for you at age 6 or 7 or something like that. So he has it on his wall, which is great. Here are just some other more high-tech kind of examples.
BOB WILLIAMS: I believe the research of the African American psychologists Mamie and Kenneth Clark on the life-long pervasive crippling effects and badge of inferiority that Jim Crow racial segregation imposed on Black children best captures the egregious harm and other form of unjustified isolation prior to the Brown Decision and continues to do some 50 years afterward.
Based on the Clarks' research, the chief justice makes clear that being separated and made to feel isolated and in all other ways less than human is a grievous injustice to the individual and an anathema to democracy because it quote: Generates a feeling of inferiority as to their status in the community that may affect their hearts and minds in a way unlikely ever to be undone, end quote.
A disability scholar speech that most are unable to understand and a colleague have reported a parallel finding. Specifically, they have noted that people with multiple disabilities and ongoing physical pain consistently report it is their speech disability and more exactingly the frequent and extreme bias, discrimination, societal isolation, and exclusion they face as a result is their largest source of pain, loneliness and injustice. This is largely because most children and adults who need AAC lack effective access to it. Denied based on the stereotypical policies and actions of entities which should be complying with the ADA and other civil rights laws because no one is holding them accountable for doing so.
Because our ways of expression are not instantaneously clear to others, our rights and very lives are being eviscerated. Let me repeat that for those who might not have comprehended what I said: Because the ways we express ourselves are not instantaneously clear to others, our rights and very lives are being eviscerated. Consequently, many and we believe most we represent are disproportionately denied an inclusive education, institutionalized, excluded, socially isolated in our community, and worse. People of color who need AAC are among the most likely to experience it. This is still happening in 2024 because the same deep bigotry and discrimination affects much of our society, public policy and frankly, our humanity. It is still happening because the laws are not being followed, interpreted, or enforced in a manner that is targeted and sustained enough to challenge them.
We are therefore instead, regarding and street as being less intelligent, less capable or even devoid of language, and less of a human need, ability or right to effectively communicate or have any say over our bodies and lives. We believe this invariably results in the unjustified isolation and the social death of uncounted numbers of our members. There is almost no data collected on the demographics, needs, or status on children and adults in the U.S. who have little to no understandable speech. No federal, state, or local government entity seemingly sees any point in it. This is, of course, a large part of the problem, but for now, I want to give you a sense of what the data, as well as the research that exists, suggests and I will do this thematically.
We will also prepare and disseminate a topical list of the select references I relied on after the conference. First, regarding intersectionality and disability justice, there is growing research that at least suggests Black, brown, multi-lingual, and other multiply marginalized individuals are more likely to need AAC at some point in life and to experience harsh and compounding forms of societal oppression and discrimination as a result. This has been reported to be true of individuals with various disabilities, different ages and the age of onset.
Some argue such studies do not establish causality. Perhaps this is so. But we cannot remain inert. The time to learn more on this, make common cause with the broader civil rights community, and reckon with it, is now.
Second, research shows that infants and toddlers who will need AAC throughout life can learn and begin to express themselves through and by the time they are six months old. Many and hopefully, most Deaf children begin to learn sign language at the same age and have done so for decades. Bilingual education experts stress the importance of affording the same type of opportunities to English as a second language learners. In appalling contrast, the number of infants and toddlers currently who use AAC afforded such opportunities, however, is infinitesimally small. We know that affording all infants and children communicationally rich opportunities is essential. All means all. Not just some. However, research indicates most youth who need AAC never get it while they are in school. Allegedly free and appropriate education setting without it and without ever learning and mastering reading and writing skills. If this is not imposing and executing an irrevocable social death sentence on these kids, I do not know what is.
The U.S. Department of Education does not gather data specific to young children and school-aged students who need ACC, but the data the department does collect indicates that these youngsters have the same types of disabilities that make them extremely likely to be segregated, excluded from general education, restrained, secluded and institutionalized.
The data also indicates that students who need AAC are being disproportionately identified by standardized IQ assessments and ranked prejudice to have intellectual disabilities, especially significant intellectual disabilities. Clearly, some people who need AAC have intellectual and other cognitive disabilities, but the widespread use of these assessments by educational and other entities wrongly brand many in this manner and leads to their right to community living to be nullified.
Such assessments are inherently discriminatory. They have not been normed on people with communication, sensory or motor disabilities, and their results are significantly skewed by racial, language, socioeconomic, and cultural differences. For adults who require AAC regardless of whether they acquired a need for it as a child, a teenager, a working-age person, or an older adult do not fare better. While far from complete, CMS data produced a chilling statistical sketch of what the lives of Medicaid-eligible adults who need AAC are like. CMS data show that over 90% of nursing home residents under age 20 and 40% of nursing home residents of all ages have speech disabilities. Not all, of course, need AAC. Given the multiplicity of their needs, it must be assumed that most do, and that most residents who need AAC lack it.
I have not determined whether similar CMS data on people living in institutional or so-called intermediate care facilities, it is safe to assume much the same would be true. Data on people receiving any type of Medicaid home and community-based services is extremely limited. In fact, the only data we have pertaining strictly to adults receiving CMS service waivers for adults with intellectual and developmental disabilities I know of no other data on persons with disabilities who need, are eligible for, on a waiting list, or receive Medicaid home and community-based services through the mandatory home health benefit, a state option service or another waiver authority.
Even with these caveats, however, I believe the data on people who need AAC and are receiving IDD waiver services are revealing and likely reflective of those who need AAC generally.
The following findings are from the National Core Indicator Survey conducted annually by every state developmental disability agency. Nationwide the most recent survey found that 1 in 5 respondents were reported to use some method other than their speech to express themselves. Of this group, 75% were said to use gestures and body language as their primary means of expression. Only 1% were said to have a communication aid.
A disproportionate 30% of these individuals were Black people or people of color, and an overwhelming 62% were labeled to have severe or profound intellectual disabilities.
About 70% had mobility disabilities, which I take as indicative of them generally having multiple disabilities. Disproportionately, about half spent days in segregated settings. Such individuals were less likely to have friends and make fewer choices. Some of these findings might reflect the functional needs of these individuals, but these findings and others like them just not be taken for granted. They must be strenuously challenged.
TAUNA SZYMANSKI: So shifting now to some additional concrete lessons that we're taking away from our work, first of all, we think that probably most, if not all of the bias and discriminatory treatment our community faces is due to the perception that if you can't speak, you also can't think. So this equating of speech and language, but if you look at the brain and anatomy, there's no basis. Those two functions are done in different parts of the brain. Speech is a motor function and language is a cognitive function. Most folks who have difficulty speaking also have trouble moving their hands. So they can't handwrite to prove that they're human and have language, and it's hard for them to demonstrate. So that's sort of number one. And then following from that is the whole IQ thing, which I'll get to in a second, as well.
Just a couple of quotes from a fairly prominent AAC user in the United States, her name is Jordyn Zimmerman. I highly recommend you watch this film, it's $4 online. It basically tells the story of her life from age 18 to 25 or something. So she said, "the assumption was that I had no understanding and professionals saw my behavior as being unintelligent. They focused on my behavior and made the assumption that I would not be able to express myself with any form of language."
So before 18, she was completely segregated. She was restrained on a daily basis and there's a quote in that movie that said, Jordyn was the most difficult student I have had.
And then she got AAC and she went to college. She got her master's of education from Boston and she's doing an MDA right now and she's also the chair of our board and prominent speaker around the speaker circuit and she has a full-time job aside from that. So that's Jordyn and it's really remarkable. This is a photo of Jordyn wearing a T-shirt that says speech does not make someone more human.
She says my brain always instructs me to do one thing, but for some reason, my body does something else. If I could control these things, then I would. So many AAC users talk about this brain-body disconnect, like they can understand you're asking them to hand them a cup but the brain can't tell the body to reach out and do that. So back to some of the IQ issues, right? So because every IQ test, every standardized psychometric test requires some kind of motor control. Or speech. You have to orally answer the question to the tester or be able to hold a pencil and fill in the bubble. So because of the motor issue, any resulting score from an IQ test that might be administered to someone who does not yet have AAC, but has difficulty getting speech out, you have to just assume that they're inaccurate, invalid, not evidence-based, harmful and discriminatory.
So as Bob was getting into a little bit, effective communication is really essential for self-determination, literacy and education, emotional wellbeing, employment, healthcare, citizenship and safety. So we're getting into the Olmstead side of things. So when we have thought about these things, and we were discussing earlier with you, if you can't communicate and there are barriers for you to getting access to effective communication, it's really not just a civil rights and discrimination issue, but is a human rights issue, a form of institutionalization. We should be spending more time on this and recognizing it for what it is. Just to remind folks, the ADA equated speaking and communicating with breathing and thinking as major life activities.
So the importance of communication for community integration. There's a quote in Olmstead about being confined in an institution, and it severely diminishes the everyday life activities of folks and social contexts etc. The question is doesn't not being able to express yourself or to be understood the same? So different types of confinement. One is physical essentially and the other one is internal where you're not being able to convey all your thoughts and dreams and everything else. So with regard to our community, Olmstead has been less great than I think for other types of disability types. Our community tends to be the last to get out of institutions, and then even if you do get out, there's no real meaningful integration. You can't have that if you cannot express your thoughts, ideas, knowledge and desires about who to be with, where to live and where to work.
So we think of these as two types of institutionalization, right? If you're physically in the community, great. But how is that full integration? It's not if you can't communicate, right?
And then following on from that is can Olmstead's mandate be fulfilled with integrated living and employment initiatives alone? Are we adequately addressing integration for the millions of people who lack the means to communicate effectively? And we would say no. To my knowledge, I have not seen a major lawsuit or decision translating this into communication rights or even major Olmstead enforcement issues, and haven't recognized this before. Like yes, let's let this person out of this institution, a group home, but we won't let him communicate.
So they think something is going well, but it's not.
And so yeah, again, someone who does not have access to effective communication or AAC living, basically institutionalized life even when you're not in a formal ICF. I've included some of the regs on communication rights. I included citations if you're not familiar. The third takeaway is that denying access to effective communication for someone is, of course, a standalone ADA violation because it has a whole section on effective communication. On top of that, it also will deny equal opportunity to participate in or benefit from an aid, benefit or service.
So I think that speaks for itself.
And, of course, little has changed over the past 50 years. And these are just some quotations and you have something else to say. I'll read it. I'm not sure you've got it in your thing.
We continue to make progress, but the ugliness and crippling effects of unjustified isolation persist in the everyday lives of people with disabilities abroad in our land. We believe it is especially pervasive among people who need AAC. We need your help and those of your colleagues in framing, elevating and combating this isolation. We believe this can be accomplished through the filing of administrative complaints, litigation and other legal strategies at the federal, state and local levels aimed at other things. We would welcome the opportunity to partner with you on any of these or related concerns. Thank you for attending and for the vital work you do.
And just for takeaway purposes, the next few slides include -- just to point out, she's wearing upside down a mask of CommunicationFIRST, Judy, and she was a founding board member of the organization, as well. And Bob actually spoke at her service. Hyperlinks to resources that we have found very helpful and these are a bunch of films we recommend that future AAC users. Last year, since we got a lot of questions about the language and words we used to describe our community, we came out with a guide that we're calling an internal style guide because we don't want to seem like we're dictating speech. This is just a visual, but there's a whole packet on our website. Questions, comments?
SPEAKER: One of you made a comment about work that you do at your organization around guardianship imposed over people who don't use speech to communicate, and I wonder if you could speak a little bit more about that, especially in terms of people who can't speak, can't think, don't have capacity as that word is used in those settings and the effect that that has on people.
TAUNA SZYMANSKI: We've done a few things on guardianship but ultimately, we want to create a toolkit. We haven't done that yet. We get contacted weekly by families and AAC users and others about people trying to assert guardianship and denying them the ability to retract that guardianship and get their rights back.
A lot of times, it's in the context of divorce. Someone is asserting something that this kid, there's no way they can communicate. Look at them, there's no way they can think and the other saying, yes, absolutely this kid can communicate.
So in terms of practicality, in order to retain your rights, if someone is asserting guardianship over you, you have to be able to communicate your decision. That's the key issue. Can you communicate. But we argue that there are ways, there are many ways actually to assist or allow a person who cannot necessarily use their speech to communicate to indicate consent or assent or whatever. Even people who don't have AAC, they can nod or look happy or sad or whatever.
SPEAKER: I will introduce myself. I'm Sam, the legal director of Equality Trust, for individuals with disabilities in D.C. and we operate a project to help people access alternatives to guardianship so this is an issue that we have seen very often. A lot of the time as Tauna said, this will be something that ends up being almost inevitable if a person hasn't gotten effective communication by the time they're 18, because you can't access -- there are some alternatives to guardianship that are still not great, but not guardianship, like family members as next of kin consents to healthcare and they can get an arrangement and skirt around getting guardianship by getting some of these stopgap measures.
But if a person hasn't gotten any kind of effective communication by the time they're 18, it's so much harder to do an alternative to guardianship, even in a state or jurisdiction like D.C. that has a supported decision-making law. The bar for being able to execute a supportive decision-making agreement is literally you have to indicate that you want to enter into the supported decision-making agreement, but if you don't have even that or it's hard for anyone -- and sometimes, this will also happen where people from outside the family can't reliably understand the person's speech, so if someone comes to me, and it's the mom, let's say in the context of divorce.
The mom is like forget it. This person, their mouth twitched in a certain way and that means they want me to be their supporter and the dad is like, that is completely not true. I'm in a bad position because it's not sufficiently unambiguous to me what the person is trying to say. The bottom line, it can be an issue, but also, you know, as Tauna said, we do try to train people to understand a variety of forms of communication and there have been many people that we have helped with supported decision-making agreements who really have two or three words, or you have a long enough conversation with this person, it becomes really clear that they understand what I'm saying.
They'll be like pointing at the document. They'll be pointing at the person's name on the document. They're like, you know, here is the document, there's my mom. I get that this is to do with my mom. I get that they're responding in a way that makes sense. And then we will do it, and I think that that is also a thing that people -- there's to be a lot more education of judges on the bar that that is available.
SPEAKER: Speaking of that, a lot of times people do it for medical reasons. They're concerned that someone else will make a decision for their kid. One thing I will point you to on our website is this October I think 2021 Senate judiciary hearing, toxic guardianships, it was around the time of Britney, toxic was her song at the time. So you weren't touched by that one right? Someone on our board is a doctor and a parent, Clarissa, she worked in the specialty program focused on people with IDD, virtually all of them who don't have any kind of AAC and they're low-income and whatever.
And she made really compelling testimony I thought which basically was like in my experience, I worked with this population, any kind of person and she said a very small number of them have any kind of guardianship and moreover, it's way more difficult for her to do her job if there is a guardianship because these people move away. They don't care, they don't know anything. And then she actually finds it better that they don't have any guardianship.
SPEAKER:It can work in D.C. for example, that has a default surrogate medical decision-making law where if there isn't a guardianship and the doctor doesn't think that the person can consent, then there's kind of a list of people arranged by child, spouse, parent, next of kin who are empowered to make the medical decision.
It's not perfect, but people manage to kind of do it that way sometimes.
But we definitely think that if you have someone that you do support and is someone that you're advising or is someone that you know, documenting how a person communicates can be helpful in these sorts of situations, because then when you do come and you're like, I want a supported decision-making agreement, here's a full explanation. It doesn't have to be perfect. It just has to be in general this is a person that communicates that they agree, disagree, that they want to do anything. They like something, they don't like something, it can be helpful.
SPEAKER: Unrelated. Well, sort of related, I guess. I know that some states and some waiver programs do have, included in their menu of services, augmentative communication devices or services to assess need for augmentative or alternative communication. I was wondering if you saw access to those programs incorporated into efforts in a state that says program, you actually failed to provide access to this program, people, for example, living in institutions who need, but don't have access to AAC.
And also is that usual to see that service in waiver programs or is that something that's rare?
BOB WILLIAMS: This is not included in the text below. I think the -- gatekeeping creates barriers to access. And even people get devices, there is no support and training and the person gets the blame for not using it. I think the answer is yes, but gatekeeping creates new barriers to access and even when people get devices, there is no support and training, and the person gets the blame for not using it.
SPEAKER: People seem to think you hand someone an iPad.
[Laughter]
SPEAKER: It can take months or years for someone to figure out how their body is going to move to be able to type so you get a device or whatever, I don't know any schools that do a good job of training and I'm guessing that people don't get the training in schools.
BOB WILLIAMS: (Entering response) Technology is seen as a panacea, but it fails many people.(Entering response) people often use multiple forms of AAC as everyone here does.
SPEAKER: It should be part of a holistic effort.
TAUNA SZYMANSKI: I think we're both happy to answer questions today or you won't be here tomorrow, thank you all for attending and being so patient and quiet.
[Applause]