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.
LOU ANN BLAKE: Thank you, everyone. This is our final plenary session: Accessible Information and Effective Communication in Healthcare Settings. To talk with us about that we have John Thompson and Steve Gordon, and I will let them introduce themselves.
STEVEN GORDON: Thank you very much, Lou Ann. It's great to be here to discuss this topic. For the folks who weren't here for the Deaf Law Day, we were told that the number one issue that comes in to NAD is the failure to provide effective communication for healthcare appointments. So here it is, almost 33 years after the passage of the ADA, and people who are Deaf are still struggling to get the basics in a high-stakes place when they go to the doctor or they're in an emergency room. So that's what we're going to talk about today. My name is Steve Gordon, and I'm an assistant United States attorney in the eastern district of Virginia. I coordinate our civil rights enforcement program. We have one of the largest Deaf populations in the country in the Washington, D.C., area, because Gallaudet University is here, and a lot of people who are Deaf find their tribe in this area and they stay.
So I've had a lot of cases involving the Deaf community. It's a very important stakeholder in my district. And I've done a lot of cases in this space. What we're going to do today is talk a bit about some of the basics and then talk about some of the big issues that come up. And I'm going to allow my co-presenters to introduce themselves as well. John, you want to go first? Or go ahead, Lisa.
LISA BOTHWELL: Good morning. I'm Lisa Bothwell, and I'm a program analyst in the Administration for Community Living. My focus is on policy review and research and development. If you're not aware, ACL is housed under Health and Human Services, and we fund the community living community support services through that. We also have several community-based organizations with whom we work, and I see a few well-known grantees here in the room. So I'm very appreciative of the advocacy work that you are doing that we are helping to fund in terms of things like independent living, aging populations, and looking at legal requirements and looking at where we can apply discretionary funds to additional projects and programs to be more innovative and creative with education, research, and the like.
And I'm going to do a little bit of a shameless plug right now. We also have two hotline numbers that can connect people who are older and/or have disabilities to local services and resources in their areas. So we have elder care, which is the elder care locator. It can be found at eldercarelocator.acl.gov. I think that's the right website. And that looks at aging services in particular. We also have the DIAL hotline, disability information access line. DIAL is also another way for people to call in about services for disabilities.
They've got a hotline, they have a website, they have a phone call, and we also now I'm proud to say have ASL direct. So signing users can connect directly through sign language and video to providers who can talk them through. So I think that element of the ASL direct services as part of DIAL is incredibly exciting. And most of that came about because of the pandemic, looking at how to fund hotlines and things that we manage. So some of those residual funds have been turned over into those programs. John, over to you.
JOHN THOMPSON: Thank you, Lisa. My name is John Thompson. I'm also with the Department of Health and Human Services but I'm with the Office of Civil Rights. We are the enforcement arm for HHS. So we receive complaints and we investigate them. We do compliance reviews. We frequently partner with our partners at the USAO. We also have a regulatory rulemaking section within our office. We do guidance as well. And outreach at events like this. And I'm sorry. I'll do just a brief description of myself. I am in my 30s, white/Hispanic male with dark brown hair and a beard wearing a dark gray suit, white shirt, and blue tie.
STEVEN GORDON: Thanks for the reminder, John. This is Steve Gordon speaking, and I have more gray hair than I care to admit. I'm wearing a Department of Justice blue suit and a blue tie, and the recommended white shirt that we're supposed to wear in court. So I do that for my public appearances as well. And I would rather be in my hiking clothes. All right. So one other thing that we are going to do as well is the opinions that I express are not necessarily those of the Department of Justice. I think John wants to...
JOHN THOMPSON: For myself and Lisa, likewise for the Department of Health and Human Services, our opinions don't necessarily reflect their opinions.
LISA BOTHWELL: This is Lisa. Looking at the first slide, and also recognizing that I also forgot to give a visual description, I'm a light skinned woman with shoulder length wavy brown hair. I am wearing the non-DoJ recommended gray suit today. I do want to understand where you got your suits from, gentlemen.
[Laughter]
And with my gray suit, I'm wearing a very light pink shirt. I'm a Deaf person, and my presentation is being conducted in sign language, so you are hearing this through interpreting services. The pronouns I use are she/her. I think now we can start with some of the statistics. We know about a quarter of the people in the United States have some kind of disability. CDC statistics say that 64 million adults have some kind of disability. And it's interesting because that survey also says 5.7% of people have some kind of hearing difficulty. But then we look at some disparities in the numbers because we also see that other statistics show that 13% of people have some kind of hearing disparity. So this comes from the difference between audiograms and recognition, people who realize they have hearing loss and go to get tested versus those who self-disclose but don't have a diagnosis. I think that's something worth keeping in mind in terms of the disparities in the numbers.
STEVEN GORDON: So I think we all know what's covered by the ADA, and we have some basic slides here as well. But it's important to understand that there are healthcare providers both covered by Title II and Title III. Title II, there's a lot more people within it. So at a state university will be covered, an infirmary. An infirmary at a local jail will be covered. The local mental health agencies. In Virginia, we have community service boards, and every locality is required to have local mental health agencies. They're covered as well.
So it's really important. And then obviously, like we have University of Virginia Hospital, VCU Hospital. These are all covered and they provide healthcare.
In the Title III area, it's important to know that all types of professional offices of healthcare providers are covered. That includes hospitals. That includes skilled nursing facilities. And I've done a lot of cases in that space. There's an enormous amount of noncompliance by nursing facilities, and it's not just interpreters; it's also for people who are hard of hearing and for people who have low vision or are blind. And a lot of people are older who go to nursing homes who end up having those type of disabilities. And then of course your orthopedists, your dentists, your physical therapists, your mental health therapists, these are all covered under Title III.
JOHN THOMPSON: Thank you. This is John speaking. I would just like to also note, while majority of this presentation focuses on the ADA, Section 504 of the Rehab Act, and 1557 of the ACA, we know that anyone receiving money from HHS, which includes really Medicare and Medicaid, and I think we are just looking over the statistics recently and I think it's around 150,000 ambulatory care facilities, one-doctor operations all the way up to hospitals, it really is the majority of healthcare providers in the United States are covered by 504. And to a lesser extent, Section 1557 of the Affordable Care Act, that is for programs administered by us under Title I, and administered by entities established by Title I of the ACA.
Next slide, please. So this is the interactive portion of our presentation. And I understand even though it's still early, it's been a long day so far, so if everyone is feeling a little shy, we can just read a lot of the answers, but I'll give people a chance to answer first. Some of these questions will be easier than others. First off, starting off easy: A skilled nursing facility operated by a private entity provides a variety of services to its residents, including healthcare, medication administration, assistance with activities of daily life, and providing meals. Do we think this facility is covered by ADA? 504? 1557? I think I'm hearing a lot of people say yes.
[Laughter]
And of course you're right. So privately operated and state operated skilled nursing facilities are covered by the ADA. If they receive assistance from the government, then they're covered by 504 and 1557.
STEVEN GORDON: Another basic part of the ADA, a lot of people hopefully know this, is that the definition of disability is very broad. Congress rejected the Sutton trilogy of cases. So that's just an important part. It doesn't have a huge impact on someone who is Deaf or hard of hearing, but it's just worth knowing that in this context, it's very broad as well. And obviously the general principle under the ADA is that people with disabilities should not be discriminated against based on their disability. Something that is wonderful about the ADA, and it's really important, is that you don't need affirmative animus, neglect, apathy, thoughtlessness, stereotypes about people with disabilities.
That's enough. Other civil rights laws, they're more prohibitory. You can't turn someone away from a hotel because of their race or nationality. But that hotel has affirmative obligations to ensure that people with disabilities have access to it. Same thing with a hospital. And that might mean providing auxiliary aids or services. So it's an important concept that comes up a lot in this area. And a lot of people who are covered don't understand that aspect of it. So obviously there's specific provisions in the ADA and in the regulations that explain that failing to provide auxiliary aids or services is a form of discrimination. It's right there in the definition of discrimination. So it's very important, and that's different than the prohibitory.
Another important aspect that I see a lot in complaints is that medical offices are prohibited from assessing a surcharge on a patient who might need an auxiliary aid or service. Okay? Very important concept. Next question. A skilled nursing facility decides that it's simply not going to have to worry about this issue of auxiliary aids and services. We'll just kind of exact it from our service. If I say we won't accept anyone who needs sign language services, is that acceptable? Is that okay under the ADA? I see a lot of people shaking their heads no.
So the ADA also has a provision that prohibits eligibility discrimination. And in a case that I handled a couple of years ago called Brookside Rehab and Health Center, they flat out said, electronic communication, we're not going to take that particular individual that was a transfer from a hospital. And by the way, for folks who practice in this area, when nursing homes receive transfers, it's often through electronic communication through hospitals.
There's actually systems out there that are HIPAA-compliant, where a hospital will shoot out to nursing homes in the area that they are trying to transfer someone out for long-term care or skilled nursing. And in this particular case, this nursing home initially accepted the individual. They even had a date and a time when they were going to arrive. And just before they were going to be transferred, the skilled nursing facility learned that the person was going to need sign language services. And they rescinded their acceptance. And that violates the ADA. An important part of this case is that I found out the owners of Brookside owned several other nursing facilities, and they were quite clever about it.
Their names were nothing like this particular name. But the CMS has a great database where you can research the other nursing facilities that are owned by the same people, and under our settlement agreement, I required all of their nursing homes to adopt the appropriate policies and training. They initially pushed back on that. But we had evidence that their administrator called "corporate" to find out if they could find out sign language services, and corporate said no.
JOHN THOMPSON: Thank you. This is John Thompson speaking. So what we've started to introduce so far is this concept of effective communication. It's probably well-known to most of you. I just want to note that the ADA and Section 1557 have specific language that entities must take appropriate steps to ensure that the communication with people with disabilities is as effective as communication with others, which includes the provision of appropriate auxiliary aids and services. And really the auxiliary aids and services needed for effective communication will vary by context and depend on many factors like many other concepts within disability rights. There isn't really a one size fits all solution. Next slide, please. So question three: A new patient with a communication disability comes in for services. How do you determine what auxiliary aid or service is necessary?
SPEAKER: Ask them.
SPEAKER: Ask them.
JOHN THOMPSON: All right. I hear a few people saying ask them. I would say that's an answer. The type of auxiliary aid needed will vary by consumer and depend on many factors. Next slide, please. First off, what is the method of communication used by the individual? Are they an ASL signer? Signed English? Oral interpreter? There are quite a few options. Two, how lengthy is the communication? Is this a quick simple greeting? Is it a longer intake? How much time it takes really matters. How complex is the communication? In very limited circumstances, it might be okay to write notes or use gestures. Certainly not if it's complex information you're trying to convey.
What is the nature of the communication? The nature matters. You want someone, if you're giving them life-altering news to understand it. And you need to take the time and make sure that they understand it. And then finally, context. Context is everything. It can completely change the conversation. And I will just come back to the answer that we got to that question, I mean, ask the individual. They are the one who lives with this disability, they understand what works for them, and in terms of what's actually written in the ADA, there is a requirement to give them primary consideration for what works for them.
STEVEN GORDON: The primary consideration applies to Title II entities. For Title III entities, do you have to consult with the individual and it has to be effective. So if you the entity decide what type of auxiliary aid or service, it better be effective. If someone is asking for something different because they know themselves and you choose a different auxiliary aid or service and it's not effective, that will be problematic in the Title III context. Justice Jackson wrote one of my personal favorite ADA decisions when she was a district court judge. It's a case called Pierce versus District of Columbia. And the case involved an inmate at the D.C. adult detention facility. And one of the things that she noted in her decision is that ASL is not derived from English. It has its own syntax and grammar and utilizes signs made by hand motions, facial expressions, eye gazes, and body postures.
Therefore, the vast majority of Deaf people, including the plaintiff in that case, lack the ability to communicate effectively in English whether by writing notes or reading lips. It's really important, even if someone was born here in the United States and they're Deaf, their first language is usually not English. And a lot of folks don't understand that. That's one of the cultural competency type things that I find among hearing people. There's a little bit of magical thinking that goes on, well, we all write English so a person who is Deaf is certainly going to understand it. So I included a form that we attach to our settlement agreements. This one came from commonwealth rehab center. You can find it on ADA.gov. But you can see the type of questions that should be asked when someone is Deaf or hard of hearing and needs auxiliary aids or services. So I think, Lisa...
LISA BOTHWELL: This is Lisa speaking. Thank you, Steve. On to auxiliary aids and services, commonly abbreviated to AAS. Now, there's a list of them on the board. But that is not a finite list of auxiliary aids and services available. Some of the examples that will be talked about are real-time captioning services, CapTel phones, cued speech interpreters, assistive listening devices, hearing aid compatible telephones, video phones, and sign language interpreting services as mentioned. It's important to describe a little bit about cued speech right now. We'll go into the others as we go through the presentation. But with cued speech, I see some misunderstandings.
Cued speech is a visual representation of the spoken language. It represents the eight phonemes and four hand positions around the mouth that represent those phonemes in the English language, although it can also be adapted to represent other spoken languages.
And they're called cued speech interpreters, but according to the dictionary, it's different. The ADA does put them under ASL interpreters, cued speech transliterators, and oral transliterators. But I would like to point out that the dictionary definition is a little bit different, because an interpretation operates between two languages, and ASL being its own language may be interpreted between that and English.
I think that was all I wanted to say about that one. There are a variety of terms that I just went through in terms of what might be constituted as auxiliary aids and services. Looks like at CART, computer assisted real-time transcription. Most of the time what we're generally talking about when we talk about CART is using a person who brings equipment into the room and reflects sound-based phonemes that connect to software to have an output of words and sentences.
The court reporting that happens in a courtroom is a little different, because those people have access to different visual output. But with CART reporting in a room like this, we see spoken English that comes out in real time versus what might come out and be edited more effectively for a record later. And then we look at assistive listening devices. My question to you, on the slide, what of these options are actually not an assistive listening device? In general, what an assistive listening device is, it's a component with a microphone piece, goes through a transmission, the microphone listens to sound and is transmitting that speech. In the same idea as a microphone and an amp or speaker right now. But rather than using an amplifier as the output, it can either be an output that is unique to the individual and receiver, or to an F.M. loop in a room so that the person's hearing aid can connect to that system. Cochlear implants can also do that.
F.M. systems might also use radio waves, and you would be able to listen to regular radio. There's also systems that come in via infrared. I'm having a hard time pronouncing that word. My apologies. And the newest addition to that these days is Bluetooth. So hearing aids can connect to myriad sound outputs. Personally, I think that's pretty cool. On the slide, we have a picture at the bottom center of Marlee Matlin, and she is communicating in sign language. At the bottom of that still shot, you see the captions across the screen that say "Thank you to Gallaudet University for your wonderful..." that's the part of the captioning that's visible. And that's an element of telecommunications. As I mentioned earlier in terms of hearing aid communication, the Communications Act of 1938 -- excuse me, 1934 -- basically means communication assistance in the middle of the interact between a signing person and a nonsigning person.
That was the essence of the technology that has since evolved. And the FCC, which I think has had a presentation here this morning, can probably give you more information on what that looks like. But in terms of history, they regulate television decoders. In 1990-1991, that became effective and has been since in terms of its regulation output. Then there's phones and amplified phone systems. Often people may refer to T-coils, which is a wire inside the hearing aid or cochlear implant that can connect to assistive listening devices via electromagnetic technology interfaces. So hearing compatible telephone really means that the phone itself can't cause interference with the technology. Otherwise there's the opportunity for an awful lot of static on that line. And then the hearing aid compatibility law is a place that you can go to for more information on that. And the last one is amplified phones and captioned phones. Amplified phones simply increase the volume over what a standard phone will do. And lets you also have a text output and a Braille output. So there are other options there that might suit people more effectively.
The picture you can see of the captioned phone might be done through a landline or through the internet. And the output, again, from what the other person is saying comes up in text form. The picture that you're looking at now shows a relay call coming in via Title IV of the ADA.
And then there's sign language, also considered an auxiliary aid and/or service. The picture on the screen is of an examination room with a patient on a bed with medical practitioners around them in the room. Now, has just been mentioned, ASL is its own language, with its own grammar and syntax, its own phonological rules, expressed visually you rather than auditorily, so facial expressions, body shift, and use of space around the body in three dimensions is part of what makes ASL a visual language. Parts of the brain that are impacted by spoken language involve the occipital lobes. But with signers, the right side of the brain is activated during the use and understanding of signed languages as well.
And then, again, as Steve has just mentioned, there have been some lawsuits out there suing for lack of provision to effective communication, but one that has just come up, I won't go into it in detail, but the information came out just yesterday on the resolution that HHS's Office of Civil Rights has accomplished with Dearborn Obstetrics and Gynecology, who refused to provide interpreting services for a patient who came in. And the next slide goes back to Steve.
STEVEN GORDON: I also want to say, there's a lot of different kinds of auxiliary aids and services, and it's constantly evolving. If you want to get more information about this or help folks figure out what they are, most states have a commission or a department for the Deaf and hard of hearing. In Virginia, it's called the Virginia Department for the Deaf and Hard of Hearing. We also have something called the Northern Virginia Resource Center for people who are Deaf and hard of hearing, and they have a technology room. And Debbie Jones there loves giving a tour of the technology. If you come to the national ADA symposium, often vendors will be out in the vendor area with different types of new technology. So it's important to know this is an ever-evolving area, and the regs anticipated that there would be other types of auxiliary aids and services.
Let's talk about handwritten notes. This is a mine field in medical settings, because frequently entities won't get the sign language interpreter, they won't get there on time, they'll get a flat tire. I've heard about a lot of flat tires in my cases. It's amazing. And there's a lot of magical thinking, particularly by people who fail to get the sign language interpreter. Handwritten notes can work. Lipreading can work.
And the department, when it was writing the regs, recognized that. They got comments in from the Deaf community, and the department explained that exchange of notes likely would be effective in situations that do not involve substantial conversation, for example, when blood is drawn or for routine lab tests or regular allergy shots are administered.
However, interpreters should be used when the matter involves more complexity, such as in communication of medical history or diagnosis, or conversations about medical procedures or treatment decisions, or information about home instruction for care. So there is a dividing line. It's not specifically set forward in the regs, but know that the department thought about it and put it in by section analysis. Let me ask practitioners here a question: How many people here, when you start citing a reg, do you go and take a look at the section by section analysis for that reg? Right? And I see some people shaking their heads yes. I've seen some cases litigated where I know the section by section analysis speaks to something and you don't see anything about it in the decision.
Really important. There's a lot of wonderful information, not just about effective communication but about other areas. And a lot of the courts give that similar type of deference as the regs themselves. Technical assistance manual has a very similar discussion on use of handwritten notes. But again, this is an important area, and these are in the presentation because this is something that a lot of medical providers do. And is it okay to do for very short things? Is it okay to do while you're waiting in the emergency room for the interpreter to arrive or for the VRI to be set up? Yeah, it might be. But you need to make the effort to get the interpreter. It's really important. And a lot of my cases have involved people who, voila, they said the handwritten notes, I say, provide me with the handwritten notes so I can see what went back and forth! A lot of medical providers don't have them.
All right. So there's also two very helpful technical assistance publications, and I have found them very useful. They're written in plain language. One of them is the ADA business brief communicating with people who are Deaf and hard of hearing in hospital settings. And it's really, really informative, not just for hospital settings, but for skilled nursing facilities and other medical settings. And the other one is ADA requirements effective communication. And these both provide a lot of information, and some of the courts have also cited to them as being useful as they look at different fact patterns that come up. All right. So next topic is, qualified interpreter. Really important issue. I got some war stories about this. I had a case with a correctional facility. They had three people who knew a little bit of sign language, and they told me that those were their interpreters.
One, in the 7th grade, she was the mentor to a Deaf student who was brought in to her class, and for 6 weeks she learned some sign language. Well, suddenly she was enlisted to be an interpreter. Another had worked in a School for the Deaf and hard of hearing, and he had learned a little bit of English signed language. That's different from American Sign Language. It's much more like gestured English. But he hadn't gotten very far with it. He was just doing it because it helped him with the job that he used to have. Another case I had, so Virginia, something that is really good is that the state legislature has said that one of the world languages that you can study in order to get an advanced high school diploma is American Sign Language. It's amazing, it's really important, particularly for people who have dyslexia, and written languages are very difficult for them. It's also great because people who are Deaf have people who aren't Deaf that they can communicate with. But it's not enough to make you a qualified interpreter.
So a skilled nursing facility had a recreational therapist, and the daughter of one of their residents said, I need an interpreter for a care planning meeting. So they had seen the recreational therapist occasionally sign with people, and voila! She became the interpreter!
Very important. The regulations explain that in order to be a qualified interpreter, you must be effective. And that means being able to interpret both receptively and expressively, using the sign language of the individual. And again, there's multiple types of sign language. You have to be able to interpret accurately. You have to be able to interpret impartially, which is why family members are usually not going to be qualified interpreters, even if they're fluent in sign language. They can't be impartial. And you need to understand the specialized vocabulary in that setting.
Medical settings frequently have lots of specialized vocabulary. Legal settings do as well. So it's very important, a person may be a qualified interpreter in some settings but not others. So I gave the answer away to this. You have an employee who took two semesters of ASL. Is she qualified to interpret for a care planning meeting to discuss the services that the SNF will be providing to a resident who is Deaf and uses ASL as her primary means of communication? And the obvious answer is no. So the department, again, in its technical assistance materials has the specific question, can a public accommodation -- and they have the same question for public entities -- use a staff member who signs "pretty well" as an interpreter for meetings with individuals who use sign language? And the department I think put it a lot better than I have: Signing and interpreting are not the same thing. Being able to sign does not mean that a person can process spoken communication into the proper signs, nor does it mean that he or she possesses the proper skills to observe someone signing and changing their signs or finger spelled communication into spoken words.
The interpreter must be able to interpret both receptively and expressively. Just because someone is fluent in a language does not mean that they are qualified to be an interpreter. And as someone who enforces Title VI of the Civil Rights Act, I can tell you the same applies for foreign language interpreters. It's very important. Learning how to interpret is a skill unto itself. And in fact Northern Virginia Community College teaches people how to become sign language interpreters. They first have to become fluent, and then they spend a couple years studying how to be an interpreter and it includes things like ethics and other topics as well as the mechanics of interpreting. Is certification necessary? And the simple answer to that is no. This is a little bit of a confusing area because there's not a universal way to certify people in the United States to become sign language interpreters. And there have been different agencies that have done it, but the department has chosen to go with a "qualified interpreter," with someone who has the ability to do it, as opposed to certification.
The other issue is that someone may be certified but they may not be able to interpret in the specialized language they need for a particular setting. So I've already discussed the Fairfax nursing center case and the Arlington County sheriff's case, the situations where they had employees who knew a little bit of sign language. This comes up a lot, so if you have cases in this area, know to look out for it. Both entities emphatically told me that they had interpreters. So there wasn't anything to see here. And during the course of the case, I said, let's go get their interpreting skills evaluated. And Gallaudet has an evaluation service. Others do as well. And as you can imagine, they did not fare very well in those evaluations. But it's an important concept to understand, you may get someone who says they have an interpreter, but you want to go on and ask the question, what are their qualifications to do that. This is again from the section by section analysis. It's important that people be able to both interpret receptively and expressively.
Someone who is Deaf cannot be a qualified sign language interpreter either because they do not have the ability to turn voice information into signed information. And I have had entities who have Deaf employees, and they tell me, well this Deaf person was the interpreter. And that's not how it works. Now, someone who is Deaf can be a Certified Deaf Interpreter, which is something that's a little bit different. Sometimes there will be a person whose sign language isn't very good and a Certified Deaf Interpreter can accompany a qualified interpreter and assist them in understanding what the person is trying to sign. So it's very important to understand when you start doing these cases, there are different kinds of interpreters, and to understand and read about it and understand that part of it.
So I had a case involving someone who had cerebral palsy. She is Deaf. She also has intellectual developmental disabilities.
What kind of interpreter do you think would work for that individual? Anyone have thoughts on that? Okay, well, what I ended up doing is I needed to interview this individual. I asked around, and I wanted to find someone who was good at discerning signs from someone who didn't have fine motor coordination with their arms and their hands. Because not everyone was capable of interpreting for her. So it's very important, if you have someone who has additional disabilities, that you get an interpreter that's going to work for that person. Because one of the ways to be qualified is you have to work, and it has to be effective for that individual. In fact, the regulations specifically explain that.
I talked a little bit about Certified Deaf Interpreters already. You can see that the section by section analysis references them. And there's also a nurse management treatise that I cited from that explains to nurses exactly what Certified Deaf Interpreters are. And until I started working in this space, I wasn't familiar with what they were. All right. You have someone who has Usher's syndrome. Helen Keller I believe had it. And they're both deaf and blind. What kinds of auxiliary aids or services might work for that consumer? Any thoughts?
SPEAKER: Protractile.
STEVEN GORDON: Protactile interpreter. Braille is another auxiliary aid. But there's tactile interpreters, done on a person's shoulder or back.
JOHN THOMPSON: Thank you. This is John speak. I'm going to introduce our next concept through a question. So let's say a skilled nursing facility sets up a care planning meeting for a resident. The resident wants his son, who is Deaf, to participate in the care planning meeting. Is the SNF required to provide a sign language interpreter for his son? I'm seeing some head nods.
We'll go to the answer. Yes, the answer is generally yes. Because in that case, his son is a companion and in the ADA and now in the proposed Section 1557 NPRM, effective communication requires patients and their companions. So that requires a public accommodation to furnish auxiliary aids and services to the individual with the disability and to their companions. One another thing I want to note, when I say companion, companion does not necessarily mean interpreter. Companion can be anyone coming in with the patient.
And then finally, just want to note that companion is very broadly defined: A family member, friend, associate to the person receiving access of the facilities, who along with the individual is an appropriate person with whom a public accommodation should communicate.
It's important to note that the individual with the disability, the companion doesn't necessarily have to be involved in their healthcare either. They can just be that interested party who is there with the person with the disability.
STEVEN GORDON: And I'm going to talk about a few cases involving this concept. And I'll also tell you, I've gotten the argument, oh, well that person wasn't the healthcare proxy so we don't need to get an interpreter. The department rejected that. Companion is much broader than a healthcare proxy. In fact, the plain language of the reg explains that. I had a case involving Spotsylvania healthcare services, who failed to provide an interpreter to the daughter of a patient. The patient came in at 3:00 a.m. in extreme medical distress, and within a few hours was unconscious. Within a few days she had passed away from her medical issues.
During that entire time period, they never provided the daughter with a sign language interpreter, and she asked over and over again. And, in fact, at one point they wanted to withdraw the ventilator, and we all know from COVID what ventilators do, they keep people alive when they're really sick. And they wanted to withdraw the ventilator treatment because the mom was so sick that she wasn't going to recover. And rather than getting a sign language interpreter to help explain it, the nurse told me, oh, no, no, she understood lipreading. So the biggest decision that that daughter had to make ever about her mother, and they expected her to do it based on lipreading.
In that particular case, we got equitable relief, we got $120,000 in damages. For the folks here who are familiar with Cummings, know that Title III of the ADA has a specific provision that allows the Department of Justice to recover monetary damages. So it's important to recognize that. I'm not sure, is in yours or mine? Okay. You notice that a patient who is Deaf is communicating with a family member using sign language. May you ask the family member to act as an interpreter for a meeting in which sign language interpreter is necessary? A lot of people are shaking their heads no. And there's a specific regulation, this is part of the 2010 regs, and it explains that you should not rely on an adult accompanying an individual with a disability to interpret. And then there are two exceptions. There's the emergency exception. I will tell you, an emergency room cannot use that exception. They are supposed to be set up for emergencies.
Now, there's an exception to what I just said. An unexpected tornado is bearing down on a hospital, and you want to communicate to someone who is Deaf to go down to the basement. That's the type of emergency that this reg goes to. The tornado exception. All right?
Second exception. And boy, healthcare providers love this one too. There are three parts to this exception. First, and most importantly, the person with a disability has to request that the accompanying adult interpret for them; second, the person who is being asked to interpret has to say okay to that; and third, it has to be appropriate under the circumstances. And it can't be that the facility or the provider forgot to call an interpreter and then they go over and ask, hey, would you mind interpreting for your mom. That doesn't meet the criteria. I had a case with a flat tire, the interpreter got a flat tire, at least that's what they told me, and it was in a psych hospital and they asked the psych patient, whose record showed that they were delusional, and they were hearing voices, and they asked them to interpret for the people who were Deaf in the room. That's not appropriate.
So this is a narrow exception. And in the section by section language, they talk about it being completely voluntary and people not being pressured into doing it. When it comes to minor children, only the emergency exception applies. And there's a case involving Staten Island Hospital where they asked an 8-year-old to interpret for his father. In fact, his father was going in for surgery. They asked the 8-year-old be taken out of school to come and do that. Clear violation of the ADA. Good Neighbor Homes Incorporated. This case involved a group home and an individual with intellectual developmental disabilities was residing there. She also had cerebral palsy.
And they never got her an interpreter. She was there for 939 days, and the group home not once got her a sign language interpreter. They would turn to a family member. And the family member wasn't always there. It's a group home. The family member would be there occasionally. And they would ask her to please let them know what your family member is saying. We got her $40,000 in compensatory damages for associational discrimination. So it's very important. It's taxing on the family member too because that family member wanted to be there as an advocate for her sister. And she was enlisted in to work for the group home company interpreting.
JOHN THOMPSON: This is John speaking. I know we're running a little low on time so I'll go through this quickly. Next question we're going to talk about, an individual is brought to the emergency department of a hospital at 2:30 a.m., terrible circumstances, throwing up blood, in respiratory distress. Her daughter, a companion, is Deaf and with the patient. Is the hospital required to furnish a sign language interpreter for the daughter at that hour?
Short answer is yes. Hospitals should have arrangements in place to ensure that qualified interpreters are readily available, both on a scheduled basis and an unscheduled basis with minimal delay, including on-call for after hour emergencies. And the size of the hospital, really doesn't matter. You can't claim this is overly onerous if you have so many hundreds of beds.
LISA BOTHWELL: This is Lisa speaking. Again, in the interest of time, I'll go through this quickly. Video remote interpreting, VRI, means the interpreter is remote and the people having the conversation are in the same location. And there are problems around the qualifications and the quality of that kind of service. What you need to do is make sure that you're addressing things like lag, audio, asynchronicity, pixelation on the screens, the size of the screens, and importantly, ensuring that staff are trained in how to use both the equipment and the service.
I can't think honestly on a personal level of any time I've gone in and VRI has been provided where it's actually worked as it's intended to. Medical centers often use Wi-Fi. That can be problematic. The room it's in may have concrete walls that block the signal. The staff don't know how to turn on the device let alone how to use it. The signal has delays. If I'm trying to have a conversation with the nurse and they say, let's close up this and wait for the doctor to arrive, they close it out and the doctor comes in and cannot figure out how to turn it on again. All of those kinds of things result in a massive waste of time and expenditure. And I have not yet had the opportunity to sit down with my medical practitioner and have an efficient, effective medical appointment using VRI services.
Next slide, please. There are also issues and challenges galore with VRI services. There are also places they can't be used effectively. In labor and delivery, the screen cannot be positioned in a way that's conducive to the person in labor. I have heard stories of people bringing in VRI for persons who are deafblind who cannot view the screen. So in terms of public accommodations and their requirement to ensure effective communications during each interaction, can you go down one slide? So this is talking about a holistic experience, not an incidental level. So, again, Proctor versus Prince George's hospital. The person went to the hospital after having a motorcycle accident. They were under hospital care for things like surgery, repeated surgery, recovery, physical therapy, and at each of those interactions along the way, the patient was met with myriad challenges and not providing effective communication.
So again, it looks at a holistic experience. And let's talk about lipreading quickly. I'm often asked if I can read lips. And it's almost a trick question, because in asking me can I lipread, the understanding is implicit in the question, so I can't really say no to it. And yet what they're really asking me is can I do this on an everyday long-term basis. So with some of my colleagues I've had that conversation. But we get asked it all the time. Part of what lipreading entails is understanding of the phonemes, which is the audible representation of sounds, and it's equivalent to sign language visemes, and then we come across homophemes, which look the same on the mouth. These lead to myriad misunderstandings. Think about the words bat, pat, and mat. They are examples of homophemes. They look the same on the mouth.
The next couple of slides show an example of what might happen with a doctor showing the text of a prognosis to a Deaf person and expecting them to lipread, when about 25% of what is produced on the lips is actually understandable. The difference is quite glaring between the 25% of the message and the full text. Those are there in the PowerPoint for you to look at. So should you receive a relay call, what should you do? That's question 11. And the ADA speaks to this in that the call should be handled in the same manner as any other call to that entity. As technology is improving, Deaf people are able to make calls in different ways, and in such a manner that the person on the other end main not even realize it's an interpreted call.
The Deaf person may say to the interpreter in the middle of that call, don't announce that this is a relay call, so the conversation happens as it might without someone using sign language. And it may be funny when people say, Deaf and hard of hearing people call into this place, and I don't know that that happens. I'm not sure the call recipients always quite understand what's happening. and there are Deaf people who can use their own voice, which also makes it more seamless an interface. Steve, I think this next one is you.
STEVEN GORDON: Okay. Great. So TTY is something that I think a lot of people know what those initials stand for. But the technology has really gotten out of date. And the regs still speak to TTY, but in a lot of my settlement agreements in particular, we've been requiring the entities, especially congregate living facilities, in this case a group home, to provide the appropriate telecommunications equipment, which might be something that was able to do a video call. And this is the settlement language. And if you look at my Arlington County sheriff's department case, they were required to have not only a TTY, and in that case, by the way, the inmate couldn't read and write English, so TTY was useless for that particular person who was being detained.
But a video phone would have worked because they would have been able to sign and have an interpreter interpret for someone else or they would have been able to have a video call with someone else who was Deaf. So again, that's very important to understand as technology is moving forward. So telephone relay service. Lisa mentioned this a moment ago. And question is, healthcare provider receives a call through the telephone relay service, and they say, HIPAA! I can't accept that call! HIPAA! That's a problem, right? So Wells Fargo did that because they said the banking laws prevented that as well. The regs are quite clear on this. A covered entity shall respond to telephone calls from a telecommunication relay service, established under title 4, as Lisa mentioned before, in the ADA in the same manner as it responds to other telephone calls.
JOHN THOMPSON: This is John Thompson speaking. We've been talking about effective communication. Now I'm going to introduce a separate concept that kind of intersects, this idea of information and communication technology or ICT. And the reason I'm using that term is primarily because Section 508 of the Rehab Act which governs federal departments like HHS uses that word, this definition. So ICT is information technology and other equipment, systems, technologies, for which the principal function is the creation, manipulation, storage, display, receipt, or transmission of electronic data and information, as well as any associated content. What that boils down to is essentially technology. Things that we use to communicate with each other. Some examples are computers, peripheral equipment, information kiosks, transaction machines, telecommunications equipment, customer premises equipment, office machines, software, websites, videos, electronic documents. There's the physical side of it, which you might think of check in kiosks or computers, and there's the less physical side of it, the web pages, the software, all of that comes under this big umbrella of ICT.
So why am I talking about ICT? Auxiliary aids and services include various types of ICT such as real-time computer aided transcription services and video products. It also includes web content, websites, mobile applications, and many healthcare providers use these to advertise their services, or even to provide program information or provide their services through this ICT. And the health programs, activities provided through ICT must be accessible to individuals with disabilities unless it results in a financial burden or fundamental alteration. Next slide, please. That full concept of ICT gets us into telehealth. I think we all understand telehealth was available before the pandemic, but that just super charged things.
It has become more widespread method to provide and receive healthcare services, especially during COVID. It can take a number of forms, including communication between a patient, healthcare provider, via video phone or other electronic means, and while maybe it may be convenient and effective to receive healthcare that way, telehealth that is inaccessible to individuals with disabilities results in barriers that may violate federal civil rights laws. And I'm going to pause there for a second because one of the issues we see in telehealth is whatever the platform is they use auto generated captions, and I would like to ask Lisa what her experience is, opinions are for auto-generated captioning.
LISA BOTHWELL: Goodness, my opinion. Automatic speech recognition. I have a lot of experience with that. And I think there are a lot of issues in there. Looking at pronouns within sentences, looking at punctuation that's eliminated. I mean, ASR can pick up every word sometimes and may miss one word, and that one word may be the negation, which means the entire sentence has just literally transformed in meaning. And sometimes the meaning is not clear. So ACL has looked at grants to fund the measurement of ASR on a qualitative level. So some of those grants are out there. And John, you may want to speak to that.
JOHN THOMPSON: Thank you. Next slide. I'm not sure how qualified I am to speak of the individual grants, but we can come to that later. I'll be sharing all of my contact information. So we discussed what is telehealth. What makes inaccessible telehealth? There are a variety of answers. These are just two examples. For example, this may be something a lot of people in the audience have experience the. A person who is blind may find that a web-based platform that their doctor uses for telehealth appointments does not support screen reader software. It's great if you can speak to your doctor but if you can't get to the area to speak with your doctor, it's useless. Another example, a person who is Deaf and communicates with a sign language interpreter may find that the videoconferencing program their provider uses does not allow an interpreter to join the appointment from a separate location.
Part of the reason I'm bringing this all up now is because back in July of 2022, my office, HHS OCR and the Department of Justice, released guidance on how federal disability rights laws including 504, ADA, Section 1557 required telehealth programs and activities to be accessible to people with disabilities. The PowerPoint you'll all be able to receive has a link to that guidance, which covers general nondiscrimination requirements, reasonable modifications, which is a concept we haven't touched on too much in this presentation.
Moving on to what's happening more recently in this area, there is quite a bit of rulemaking going on at the federal level, which is a good thing, I would say. On August 4, 2022, my office, department of HHS OCR published a notice of proposed rulemaking to revise Section 1557 of the ACA, continuing to require health activities provided through technology be accessible. Explicitly required that their telehealth be accessible as well.
It's still under that umbrella, but it helps if you explicitly spell it out. It would also require covered entities to implement effective communication procedures in their health programs and activities. Comments closed back in October, but we are diligently working on that.
All right. And continuing, that's not all we're doing at HHS OCR. We indicated in our 2022 fall unified agenda, we are undertaking rulemaking on Section 504 essentially. It's been about 45 years since we've updated our regulation, and as we can imagine, quite a bit has changed in that time, so we are very eager to get something done there and working very hard to make sure that it's something that could last maybe another 45 years.
And then finally DOJ indicated in the spring 2022 unified agenda that it intends to publish another NPRM to update Title II of the ADA concerning web content and accessibility requirements. That's something we are very well aware of and something DoJ has been trying to do for quite a long time. So we are also very excited about that.
STEVEN GORDON: So we have limited time. I also want to see if there are questions. We have a few more slides and I can put up our contact information. But I wanted to leave a few minutes if people had questions. We haven't received any. I see one over here. I don't know if there's a microphone? Okay. So microphone over here. The person who is raising their hand -- okay. Yeah, there's someone over here with a microphone.
SPEAKER: Thank you. I appreciate the presentation. So my understanding from the 1557 proposed rulemaking is that for the first time HHS is going to consider Medicare part B to be federal financial assistance when it hasn't previously, which I could be wrong about, so correct me if I'm wrong. But I was wondering if you have an impression of how many more entities that will cover under 1557 than HHS currently considers to be under 1557 or 504 and does that expand the universe of what kinds of entities have not previously been considered to be considered recipients of federal assistance that will be covered once the rule is finalized?
JOHN THOMPSON: Absolutely. This is John speaking. I can respond to the first part of that question. Yes, in the NPRM, we have discussed the possibility of basically expanding coverage to Medicare part B. I will note an important distinction since it's just an NPRM so far, we haven't formalized that. In terms of the actual numbers of additional recipients that would cover, I'm going to be perfectly honest, I'm not the most qualified person to discuss those numbers. I'm working a little bit more on the 504 side of things than 1557. I would encourage you to reach out. I left my contact information in the PowerPoint, which is available on the invitation, but yes, unfortunately I can't give specific numbers on that right now.
SPEAKER: I also would like to thank you for this great presentation. My name is Sonja Peterson with the Minnesota Disability Law Center. I've been accused of being a Pollyanna from time to time, but one of the good things about COVID I would say is there has been improved bandwidth in accessibility, at least in medical facilities that I've been monitoring. They've got better bandwidth, they've got more facilities to connect.
One problem that we've been seeing, though, for the VRI is they don't have sufficient frames per second. And look at how fast the hands move when people are signing? And I guess the frames are like 25 per second. And it looks like a blur. I mean, you can't read what people are doing. Is there any guidance or published best practices, or is it in the regs as far as how fast the frames per second needs to be? Thank you.
STEVEN GORDON: Yeah, the regs don't talk about frames per second, but it talks about wide bandwidth and dedicated wide bandwidth. If you look at 36.303 (f), it discusses the technical standards, and I've heard this from many people, and, in fact, I presented with Howard before on the subject of VRI, and we do have some of the folks from NAD you may want to talk to, to get information from the regulatory standpoint, though. I don't think it talks about the frames were second. It does talk about the not lagging, not chopping. What you're describing sounds like it could fit under that. In medical facilities, they're sending these huge image type things, the medical imagery that goes on, radiology, etc., through the same network, and that's going to cause some of that as well which is why it needs to be dedicated.
SPEAKER: Hi, thank you so much. Michael Bien from San Francisco, Rosen, Bien, Galvan & Grunfeld. You talked about skilled nursing facilities. There are lots of other kinds of facilities that people live in. For example, for senior housing facilities, other kind of entities. Do you guys have opinions about where the coverage goes for those kind of facilities, and are there regs on them?
STEVEN GORDON: Well, some of them will come under HUD as opposed to the ADA. Or the Fair Housing Act. Because the whole issue of how long, the ADA really more applies to transient type of places where people are in a hotel. Shelters, like shelters for unhomed people, shelters for domestic violence survivors. Those are covered. But if someone is in an assisted living type of facility for an elder person, it's more likely going to come under the Fair Housing Act. And there are regs, and HUD has technical assistance up on its website as well. I don't know if you want to...
JOHN THOMPSON: Sure. This is John speaking. A lot of what we do at HHS really follows the money. So if, for example, a group home receives any federal financial assistance from us, that is when our enforcement attaches essentially. It can be sometimes a little bit difficult to suss out whether they are getting any of that funding, but that's what we do.
STEVEN GORDON: A question in the back. And then Cat, did you have a question as well? No?
SPEAKER: Hi, everyone. Thank you so much for this amazing presentation today. The question I had was, I'm wondering if you could speak more to the power imbalance between a patient and a healthcare provider. In law school I wrote an article describing a case in California where a court found a Deaf couple's assertions that they asked for interpreters on several occasions and said it was incredible. But since the hospital didn't note that on the medical record, it was the patients' word versus the hospital. Ultimately a judge in a bench trial found that they did not request interpreters on every occasion and the hospital was able to avoid liability on that basis. This is completely absurd because obviously if someone requests effective communication in one instance, they require it in every instance.
What can do you in these types of scenarios and in settings where the quality a disabled person receives has lasting impact on their lives?
STEVEN GORDON: Michael, great question as I would have expected. So yes, the power imbalance is present in most of these cases. And it's really infuriating for people who are on the short end of that power imbalance stick. It is unfortunate when it becomes a he said/she said type of dispute, which is way too often. When I speak to stakeholders in the Deaf and hard of hearing community, I often encourage people to create a paper trail about all of these things because it makes my job easier. It doesn't mean that the courts, I necessarily agree with where the courts are coming out on this, but it does make it a bit easier.
And that nurse who said, you know, that the person when she's making the biggest decision about her mom she's ever had to make, removing the ventilator, I then, my next question to her was: Well, I didn't see that in the medical records. And there's a pretty well established rule in hospital settings, if you didn't chart it, it didn't happen. And I refer to that frequently because of the post hoc malarkey that I hear from folks when they're called on the carpet and they have to come and answer to me as to why they didn't provide an interpreter, and one of the excuses will be, well, they never asked for one. And, you know, it is helpful from a legal perspective to have the paper record. Do you want to...
JOHN THOMPSON: This is John speaking. I'll say from my own experience as someone who has reasonably good vision, hearing, there's already a power imbalance when it comes to my providers. So it's just, it can be multiplied exponentially if you don't understand necessarily what your rights are, you shouldn't have to be a disability rights attorney to understand that. And unfortunately, that's what we see. That's what Steve sees in terms of enforcement. That's what HHS OCR is seeing. And I don't know if you have anything to add, Lisa.
LISA BOTHWELL: Thank you. No. Nothing to add to that one.
STEVEN GORDON: Question? I don't know if we can get a microphone...
SPEAKER: Can you speak to the effective communication in medical settings such as a pharmacy? I know as a blind person, I have been known to go to the pharmacy and they will staple to the bag the prescription is in all the warnings, and I can't even read the label for the dosage.
STEVEN GORDON: What we look at is the nature, duration, and complexity of the consideration. I've gotten those warnings attached too. I think they probably fit under something where you will need to get an auxiliary aid or service. The department has a couple of settlements recently involving the COVID vaccine registrations that pharmacies had that were requiring them to be more accessible.
My office, we issued a dear colleague letter in 2021 to COVID service providers, reminding them of their ADA obligations. And I got actually some positive letters back from pharmacies saying that they really wanted to comply with this. So I don't know if you've asked them for an auxiliary aid or service along with the boilerplate 15 pages of stuff, but it might be worth doing, and maybe putting it in writing and seeing what kind of response you get. Because I think it probably does fit under that.
SPEAKER: The response has always been kind of a shoulder shrug.
JOHN THOMPSON: This is John speaking. I think that leads into, you can always file a complaint with DOJ, with HHS, you can get to us through our online portals or phone numbers. We really encourage you, if this is a continuing problem, especially something you brought up already and you're not receiving auxiliary aids or services, please file a complaint. This is what we do.
STEVEN GORDON: I second that.
LOU ANN BLAKE: All right. Thank you very much to Lisa Bothwell, and Lisa, my apologies for neglecting to mention you earlier. To John Thompson, and to Steve Gordon for your presentation. Thank you so much.
[Applause]
And before we have final remarks, Rebecca Williford has a quick announcement.
REBECCA WILLIFORD: Good afternoon, everyone. I come to with you my Disability Rights Bar Association hat on to remind those of y'all that our DRBA members who have signed up for the lunch afternoon events, as soon as this session ends, we will have lunch down the hall. The same room we were in prepandemic. Aerial will be there to guide you all. If you're sitting in the audience, you're going to go out the door on your left and go straight down the hall, and the room will be on your left, but we will have folks to guide you. If you are a DRBA member and you want to stick around but forgot to register, just see me, Ariel, Lydia, or John Waldo, and we will see if we can squeeze you in. It's so good to be here with so many of you. Thank you so much.
LOU ANN BLAKE: Thank you, Rebecca.
And for final closing remarks, here we have Anil Lewis.
ANIL LEWIS: It's been a whirlwind few days. All I can say is, wow. I'm really glad that you guys were able to join us here. On behalf of President Riccobono and the many members of the National Federation of the Blind, we appreciate the opportunity of sharing and learning. And hopefully we can work together collectively to continue to build an army of advocates to help ensure that people with disabilities recognize they have the right to live in the world and we have the provisions to make sure that we do that on an equal basis. Before we close, it's time to start planning for the Jacobus tenBroek Disability Law Symposium 2024.
Lou Ann is going to take a few days off before she starts that. Anyone who would like to volunteer to be part of our steering committee, we're open to that. Individuals who can help us with some of the logistics that you feel we could implement better. Definitely open to that. I'm looking forward to beginning the planning, working together so that we can take the law symposium to the next level. Again, on behalf President Riccobono, National Federation of the Blind, thank you.
We hope you have enjoyed your time here and hopefully we can think of this as a kick off moment to start now to start creating better opportunities for the future. So thank you guys very much. Safe travels home. Take care. And I am remiss to expressing my appreciation to Lou Ann and her team for all their hard work and to our entire staff who all pitched in.
[Applause]