LOU ANN BLAKE: We'll give Victoria another minute or two to get into the room.
Nichole, if you could let me know if you see her. Thank you.
All right. I think we'll be able to get started right now, on time.
Welcome back, everybody. I think we had some great sessions this morning. We'll be continuing that this afternoon.
For the next plenary session, we have to moderate this panel Sharon Krevor-Weisbaum, who is a managing partner at Brown, Goldstein & Levy, and Sharon is also a member of the tenBroek Disability Law Symposium steering committee.
Sharon, the stage is yours.
SHARON KREVOR WEISBAUM: Thank you to Lou Ann and the rest of the staff for all your work on this.
I'm excited to bring you three amazing panelists, and I'm hoping we will be able to generate some great questions. I think this panel is a terrific follow up to the earlier panel today and the one late yesterday.
So as Lou Ann said, I'm the managing partner at Brown, Goldstein & Levy and I've had the honor of representing the NFB and its members across the country for many years.
I want to talk to the panel members, and then we'll go right to them.
First, a friend and colleague of mine is Professor Danielle Beatty Moody, a professor of psychology at the University of Maryland of Baltimore County.
Her work focuses on the linkages between the I guess psychological and sociological barriers that people confront throughout their life, and then the link to the health consequences of those ethnic and racial disparities.
Following her we will have Samantha Crane. Sam, I think most of you know, she is the legal director at the Autistic Self-Advocacy Network. Sam is a Harvard Law grad. She previously was at the Bazelon Center. I am lucky enough to be able to interact with Sam often, and I know that a lot of her personal experiences and things she's going to share today will resonate with a lot of people here.
Similarly, I am thrilled that Victoria Rodriguez-Roldan is part of our panel. Victoria is the senior policy manager for AIDS United, where she brings her own kind of unique intersectionality perspectives and her knowledge in that area to fight to end the HIV pandemic. And she has her particular I guess experiences, focused on how intersectionalities of transgender identity, disability, and mental illness kind of collide from a social justice lens. And I think a lot of her experiences and things she's going to share with you today also are talking about the barriers that people are facing.
So we'll start with Professor Beatty Moody, then Sam, then Victoria. And I would really love to see questions coming out in the chat. Someone can probably help with letting us know when those are there.
Professor?
DANIELLE BEATTY MOODY: Good afternoon. Welcome, everyone, back from the lunch break.
I first just want to say thank you to Sharon Krevor-Weisbaum for this invitation, and certainly to the National Federation of the Blind and everyone else who is here attending. I just thank you for this opportunity.
I would like to share that I am a first-generation college graduate and an African-American woman living with an invisible disability.
So this particular work is really personal for me. I also know as a scholar that it is really important work.
So first I'm going to start with a review. I'm going to first highlight relevant demographic characteristics for those living with disabilities in the U.S. Then I'm going to discuss the implications of disability as a lived experience. Next I will define discrimination as a multidimensional and multilevel phenomenon. It is complex. And I'll discuss the prevalence of discrimination in this population. Fourth, I'll highlight the complex role of social contexts. So why does it matter on a day-to-day situation. And fifth, I will link these factors to theory and concept to provide just sort of a backdrop against which my two colleagues who will be presenting after me will be able to really just launch in and talk more explicitly about their topics but also so that we understand why disability is linked to discrimination and why this is in turn linked to health and equity in individuals who identify or are living with a disability.
And finally I'll note that disability is an emerging field within public health and highlight how we might consider some additional efforts from that perspective to help reduce disparate health in this particular segment of our population.
So to begin, about one billion persons report worldwide current difficulty with seeing, hearing, mobility, communication, cognition, or self-care. As of 2018, the Centers for Disease Control and Prevention reported that about 61 million noninstitutionalized adults in the U.S., put another way, that is 26% or 1 in 4 of us live with at least one disability.
This status, again, may be characterized by mobility, cognition, independent living, hearing, vision, or self-care. This statistic really does suggest that people living with disabilities make up the largest minority group in the United States. And I think that's important in terms of thinking about the landscape, right, of disability and why it really should be a central conversation.
As we know, the Americans with Disabilities Act of 1990, or ADA, is a federal civil rights law that has its central objective to basically ensure equal opportunity for people living with disabilities. And we just celebrated the 30th anniversary of this particular act. So we all know that ADA really seeks to cover key life domains for telecommunications, workplace activity, healthcare, voting. And in that, there is this focus on implementing necessary accommodations, right, to ensure fairness and access and opportunity across all of these public, private, and social sectors.
In this way, the primary goal of the ADA is to prohibit discrimination based on disability, similar to protections afforded by the Civil Rights Act of 1964 which centered more so on racial and ethnic related discrimination and similarly marginalized demographics.
What's really important here, when we think about disability as a lived experience, we must be clear that while some disabilities are visible, many are invisible. Many more are undocumented. So from a social psychological perspective, when we consider norms that shape social hierarchies, we understand that race, gender, class, religion, ableness, these things that individuals okay ewe pie, they ascribe meaning and value and in term shape a person's treatment and valuation. So in this way, it is well established that individuals living with a disability are often seen as marginalized, stigmatized, or marked, having these statuses which much more likely contributes to their own experiences with discrimination.
Discrimination can be broadly defined as the beliefs, attitudes, institutional arrangements, and acts that tend to denigrate individuals or groups because of characteristics or group affiliation that they hold or are perceived to hold, right? So similar to racial discrimination, we know that discrimination occurs at multiple levels. These include structural or institutional, which is really sort of more societal level systems and processes. Cultural, so when we think about this, we can think about the socially held ethos associated with particular disability statuses. So things that are happening in the media, news, depictions, etc. We can also think about interpersonal, right? So those day-to-day interpersonal interactions that people have that can unfold in any setting where we can be found, where human beings are.
And this last level is what we consider this intraindividual discrimination. This is really the personalized, internalized embodiment of discrimination. So how I treat myself because I have a disability. So negative self-worth, disdain, associated with a disability. And I want to be very clear that this embodiment of discrimination is inextricably linked and shaped by these other levels. So it's not just that people show up and you and I dislike themselves because they have a disability. It's really because we understand fundamentally that people living with disabilities in our society do not hold or are perceived to not hold the same value as others. And that is harmful.
So with regard to individuals living with disabilities, we know that we are met with discrimination and it can take on a more nuanced and status specific characterization. So here I just want to point out a failure to make reasonable adjustments or accommodations. And with that, there can be acts of omission and acts of commission that occur. So those sort of more ambiguous events that can occur, that certainly can cause harm to individuals who live with disabilities.
Now, the prevalence of discrimination among those with disabilities. So to highlight the prevalence, I'll focus on data from a large national NIH-funded survey. In 2019 in a peer-reviewed paper, it was reported that in more than 3900 middle-aged to older Americans, persons with at least one impairment reported significantly more frequent encounters of discrimination characterized by daily experiences with discrimination that look like disrespectful treatment, harassment, insults, being treated as if they have a character flaw, or experienced elevated odds of workplace and service-related discrimination.
This is important because these particular findings were independent of their socioeconomic background and physical and mental health characteristics. So it was purely associated with the fact that they held a disability of some sort.
So notably the workplace discrimination finding parallels, so when we look at a recent report February 2021, from the equal opportunity and Equal Employment Opportunity Commission or the EEOC, they just released some detailed findings. And essentially of the 67,000 charges of workplace discrimination, about 36% were charged as related to disability. So this is also just important to understand in terms of the prevalence of these experiences.
Now, with regard to why this matters. So contextual factors that shape discrimination and exposure to discrimination in individuals living with disabilities. So we know that individuals living with disabilities comprise a wide segment of our population, and they're not unidimensional, right? We still hold other identities and statuses. So with that, we know that there can be some additional layering of marginalization or discrimination of individuals who also happen to be living with a disability would experience. So for instance, we know that if we look at other demographic mapped on to individuals who report living with at least one disability, we know that about 30% happen to be between the ages of 45-64, about 32% are 65 years of age or older, around 18% are women, and about 27-28% identify as non-Hispanic, American Indian, or Alaska natives.
So we could go a bit further and really understand that there's also regional variation in our country such that individuals living in the south or southern states, there is a higher probability that individuals in this particular region of our country would have at least one disability.
So these data provide critical perspective because no individual is singular or unidimensional. With regard to the identities or social statuses, excuse me, that they hold. So a recent report from the CDC really helps to accentuate this point, where middle-aged adults living in poverty reported nearly five times the prevalence, five times the prevalence of mobility disability as did those who did not. When we think about — and I'll get to this in a moment, when we think about these linkages, we really have to be clear that they're not happening in a vacuum. So this really does draw attention to the complex interlocking nature of demographic and social statuses and the systems which have created them.
So here I just want to highlight a few key points that I think add further layers. So we know there can be a fluidity in variation and types of accommodations that people need over time. We also know that the timing of a disability onset or diagnosis is also critical in terms of a person's lived experience of their disability. And we also know that there are groups that we have yet to really understand or value in terms of their lived experience. So for instance, in my own work, we know that individuals who maybe fit into the other group in terms of race, so a recent finding actually indicated that about 25% of these individuals report having at least one disability which is pretty high when we're looking at other racial ethnic groups. They're the second highest reporting group of at least one disability. So this really tells us that we have to really explode these narrow forced social groupings that we have to more adequately understand and truly respect individuals who are living with disabilities.
Now, to get in to applying a theoretical and conceptual framework. Given that we know there are challenges and understanding linkages among statuses that people hold and the implications of these statuses for their lived experience and in my own work their health, I would like to draw on a few key frameworks that we actually are sort of mapping out in a paper that is currently under review. So those are social stratification theory, minority-related stress theory, intersectionality and health disparities frameworks. And I'm going to highlight quickly four key tenets that really help us to frame in our thinking why we need to look at a disability status in a broader context for just really understanding more richly these individuals, their experiences.
So first, when we look at the macro level in terms of the U.S. social historical dynamic, we really have to understand that there was a forced social grouping that really deemed one group as the prototypical group, and all other groups as "other." So in this case, when we think about disability, we can be very clear that the prototypical group would be the group that is absent of any sort of impairment. So anyone else who was not in this group would then be deemed as lowly valued or less desirable. And we see this play out at multiple levels. I've already talked about the levels of discrimination. So we see this play out, and it really can't be denied. There was a reason why we needed an act for this in the first place.
Second, an individual likely experiences their social statuses as intersecting or interlocking identities. And so in this regard, Kimberly Crenshaw, a Black feminist scholar, posited that multiple social categories, right, so ableness, race, age, gender, SES, they intersect. At the individual level, they really reflect established systems of oppression and privilege. When we look at one, we really must look at all.
Third, occupying a lower social status or multiply marginalized statuses may shape experiences of discrimination, the severity, and the frequency, right. And finally, applying an integrated framework allows us to really parse out these linkages but most importantly it helps us to understand that there are subgroupings of people, if you will, that are carrying disproportionate health burdens in terms of poor health profiles. So this is a really important point.
So in sum, it's really important that the adversity or exposure to chronic stress associated with how individuals may be treated in our society really altogether serve as social determinants of health for this particular group.
Now, health inequities with those living with disability. I'm just going to quickly tap on this area because this is going to be an area that my colleagues are going to talk a bit more about in terms of access and barriers.
So we know that adults living with disability are 12% more likely to be deemed obese. We know that they are also more likely to smoke. We also know they're more likely to have heart disease and diabetes. So when we're comparing them to individuals who do not self-identify as living with a disability.
We also know that with regard to mental health and well-being, they're more likely to have maybe a negative affect or greater negative affect. And we know that this can predispose to clinical and behavioral risk outcomes.
So in this regard, we are 8% more likely to have a clinical mental disorder, above and beyond any disability that we may be experiencing.
So I know based on my own work, we really do understand that these sorts of interlocking experiences really shape our trajectories to poorer health over our life course, and that's really very important. Particularly when you're already facing other challenges with regard to disability that you may hold.
So how is disability linked to greater risk for poorer health? Why might a person with a disability have a greater likelihood of diabetes or heart disease?
Well, we know that in terms of environmental or social stressors, they get under the skin by really creating differential exposure. So people who hold, say, multiply marginalized statuses, right, so say you have a disability, say you self-identify as someone with maybe lower education or less education or something like that, what we know is that, again, as I noted before, there can be sort of an interlocking impact. So this can create greater stress exposure because of how people are treated in our society sometimes.
In turn what happens is this chronic stress can have a cumulative impact on the body because you're physically trying to cope and to manage. So what happens is when you're faced with discriminatory experiences or situations or settings, you are having a physiological response. So this can happen a number of ways. We know historically the fight or flight response. We also are aware that, you know, the physiological systems within the body fluctuate to meet demand from external forces. And so the external forces in this particular case being our environment. So over time, if there is extensive, chronic exposure to stress, then that means that there is extensive, chronic responsiveness by our bodies. And, in turn, what that can do is compromise healthy systems, the healthy functioning of key systems within our bodies.
The other way that this can happen is through — I'm almost at time, so I'm going to really cut here so that I only go about 2 minutes over versus more.
So we know this can also happen directly. So I experience a stressor and then I have an appraisal of that stressor as a demand on me that I then have to manage. I have to figure out how to navigate this in the setting that I'm in and how to best respond.
It can also happen indirectly through other pathways such as behavior. So maybe I don't sleep as well, right, because of anxiety or being really stressed and not knowing how to function in a particular situation. Or maybe I engage in more risky health behaviors or not as healthy health behaviors. Maybe I don't exercise as much. Maybe I eat more unhealthily.
So this linkage can happen directly and indirectly.
Finally, what I want to leave you with is knowing that ADA in and of itself is not enough to really deal with the nuanced experience that individuals who live with disabilities experience every day. And so we really have to go beyond this particular component that has been offered at the structural level. And one piece here that I would like to point out is the international classification of functioning disability and health framework, which was proposed by the World Health Organization some years ago, and one key component of this particular framework is that it really looks at the environment as creating the challenge for individuals who live with disabilities versus placing the onus on the individual who has the disability. And I think that this is a really key and important point.
Finally, in closing, we know that more work needs to be done. We need a more nuanced understanding of how individuals who live with disabilities live day-to-day. And this needs to be met with a centralized and collective emphasis across neighborhoods and research settings.
And the next steps I think really here, or some of the next steps, are really to understand more how people who are living with disability, why they're carrying such a great load of health inequity, but also to understand how that might be eased through attending to these various levels of discrimination that they face.
Thank you.
SHARON KREVOR WEISBAUM: Thank you, Danielle. I know people are asking for some of the data. So we will figure out a way to get some of that data to people through tenBroek.
Sam, can you talk with us?
SAMANTHA CRANE: Hi, everyone. So I'm really grateful to Dr. Beatty Moody for giving that background because it really feeds into what I was going to say about some of the specific issues facing the developmental disabilities community.
So I'm the legal director of the Autistic Self-Advocacy Network, the nation's leading autistic-led autism advocacy organization.
We just heard about the worse health outcomes that we're seeing across the disability community but that also holds true in the developmental disability community.
People with developmental disabilities, including autism, often have poorer mental and physical health outcomes. Those mental health concerns can include PTSD from being victimized or unsafe, depression and isolation due to having inadequate supports throughout the life span. For example, according to the national core indicators, 22% of people with developmental disabilities have no friends who aren't staff or family. 25% report that they candidate or have restrictions on dating. So that can contribute to significant mental health problems and isolation.
The secondary indicators of mental health, like employment and access to the community and activities, self-determination and protection from abuse can also be really problematic. For example, 32% of white people with developmental disabilities according to the National Core Indicators have no paid individual community job, and that statistic jumps to 43% when you look at Black African-American people with developmental disabilities.
So we're seeing worse mental health outcomes, and they are intersecting with other marginalization, marginalized identities.
Physical health risks include lack of access to continuing healthcare. Difficulty managing complex co-occurring conditions. Poorer access to reproductive health. And lack of accommodations at doctor's offices.
There are some concerns that affect access to physical and mental healthcare that you have to look at from an intersectional lens. So cultural competence is one of them. We know that it's very difficult to find therapists, for example, who understand autism and intellectual — what? I just heard some — okay. Never mind.
Autism and intellectual disabilities or other developmental disabilities. Most therapists who sort of specialize in those fields are trying to often treat core aspects of the disability, which can be controversial rather than providing mental healthcare that also takes into account people's disability-related needs.
But when you already have trouble finding those therapists who understand autism, ID and DD, you have to then combine that with known problems finding culturally appropriate therapy for Black indigenous people of color, nonnative English speakers, Deaf people, LGBT people, and so forth. And then add in the need for those providers often to take Medicare, Medicaid, or other insurance. So that can be a really big barrier to accessing mental healthcare.
A lot of people with developmental disabilities and especially people with other intersecting marginalized identity basically don't have access to adequate healthcare. Again, the social determinants don't equally affect people with developmental disabilities across other identities. So for example, like I said earlier, employment concerns already really a big problem for people with developmental disabilities as a whole. But when you add in racism and other barriers to accessing employment, that can make everything worse. This can be elevated by racism, lack of family resources, inaccessibility of many groups at the LGBT community, like community centers aimed at the LGBT community might not be accessible to people with disabilities, for example.
Another example of an intersecting concern is religious refusals. So for example, many people with developmental disabilities rely on long-term services and supports to survive. Many of those long-term services and supports are provided by faith-based organizations. And people with disabilities in general of course can be very dependent on other healthcare services.
Religious refusals regulations allow groups with federal funding to invoke either RIFRA or other federal statutes to avoid compliance with otherwise applicable regulations like either the home- and community-based services final rule, which gives people a list of rights in provider owned and controlled settings in the home- and community-based services waivers. Also the Trump Administration put in religious exemptions to the Affordable Care Act 15.57 regulation which prohibits discrimination. These religious refusals are going to disproportionally impact people with marginalized genders, people in the LGBT community, people in rural communities where people might not have a choice of providers, and people to some extent also people of color who might also not have as many choices of providers.
When we talk about religious refusals, this can really affect our access to reproductive healthcare. For example, they might refuse to assist someone with transportation to clinics to access reproductive healthcare. We might refuse to respect a person's gender identity when providing home- and community-based services. They might refuse to help a person go to certain kinds of doctors' appointments. This is really underexplored since the religious refusals regulations are still kind of new, but I really do think that we're going to be seeing a lot more refusals once the regulations have had longer time to be in effect.
Accessibility of healthcare providers is another concern. Autistic people may often avoid dental care for years due to sensory concerns, might avoid routine care due to phobia of needles or getting appropriate pain care.
Black indigenous people of color communities, we have seen especially a lot of concerns where people who are trying to get care for chronic health concerns are dismissed, like complaints of pain are dismissed. People are being stereotyped as drug seeking at a rate much higher than white individuals, and this can also make it much harder to get routine healthcare and acute healthcare.
People with developmental disabilities often have difficulties with executive functioning and accessing supports. There's a catch-22 where the process of accessing supports for executive functioning to help people manage their healthcare and make doctor's appointments and remember to get to their doctor's appointments, getting those supports themselves takes enormous resources. So if you don't have a well-resourced supportive community, it can be extra difficult accessing those supports and getting healthcare.
People often have communication barriers. A lot of healthcare professionals don't understand how to interact with people who, for example, are nonspeaking and use augmentive and alternative communication. There's an assumption often that people with developmental disabilities must have guardians and that if someone doesn't have a guardian, they will have a much harder time accessing healthcare.
There is often a refusal to bring in supporters due to COVID, and this has had massive intersectional effects. And I'll give an example. We had a Black autistic community member who had repeated trips to the emergency room. Due to advocacy of the disability community, we had guidance saying that emergency rooms had to allow people with disabilities to bring a supporter in. If a supporter was necessary to help that person access healthcare.
The hospital supposedly had adopted this policy and communicated it to staff, that if someone had a disability, they were entitled to bring a supporter in, even though the hospital had a sort of no visitors policy due to COVID.
But security guards outside the hospital repeatedly were stopping this Black autistic community member outside the emergency room and would not allow her partner to accompany her to the emergency room. And as a Black woman who really needed medical care and was in pretty significant medical distress, her fear was that if she tried to argue in that moment with the security guards, she would be treated with violence, that they would call the police, and/or that they would deny her care at the hospital entirely. So she repeatedly ended up going to the emergency room without a supporter even though the policy which legal advocates had gotten in place should have entitled her to support. And that's still an issue that we're seeing happening. That's not the only case that we've seen.
In reproductive health, there's frequently an assumption that people with disabilities don't need reproductive healthcare. Especially people with developmental disabilities who are seen as asexual. They are ableist and eugenic assumptions that people with developmental disabilities can't or shouldn't have children. And these are often compounded with systemic racism that has resulted in the sterilization or other denials of reproductive justice to people who may get pregnant who are Black indigenous people of color. So again, this is an issue that is particularly felt differently among different sections of the developmental disabilities community.
And similarly it intersects with LGBT identities because access to assistive reproductive technology is expensive, it's often not available from Medicaid and often requires the finding of medical but not social infertility.
There is of course an intersection with transgender healthcare for people who are transgender with developmental disabilities who may face difficulty accessing healthcare. And Victoria is going to talk about that more.
Religious refusals, again, are a big problem when accessing reproductive healthcare. And there are systematic problems with accessing. I'm going to include sort of the broad spectrum of parenting in here. So for example, people who are on home- and community-based services waivers can receive assistance with personal support but they can't receive assistance with childcare. So home- and community-based services providers may help you prepare a meal for yourself but not for your child. That's a significant reproductive justice issue because then people are often targeted for neglect of children and denied the right to parent. Again, this is an issue that is particularly problematic for Black indigenous people of color who have historically been targeted by the child services due to systemic racism in child services agencies.
So I want to finish with sort of areas for advocacy. What as lawyer characterize we do to address some of these concerns. One is to continue advocating against religious exemptions and other exclusions from generally applicable civil rights laws. I think that in addition to advocating for the repeal of these regulations, I think it could be fruitful to ensure that even if there are federal funding recipients that can refuse to provide services, we establish that it's the responsibility of a Title II entity to arrange for an alternate provider. You can't just like delegate discrimination to contracting agencies.
We need to increase the competence of healthcare providers and ensure that providers understand their ADA responsibilities. So for example, reasonable accommodations in healthcare settings should include accommodating supported decision making, providing anxiety management, providing AAC access, cognitive supports and mobility supports. So for example, scales for wheelchair users. But we have to remember that as in the case that I described earlier, it can, you know, like policies on the books are often not enough and they're not followed in practice and they're not followed in actively discriminatory ways where they will, for reasons of, for example, racism — I'm sorry — we will see generally applicable policies no the followed for people of color.
I think one potentially really good area for advocacy could be network advocacy. For example, the Medicaid program doesn't include providers to treat people with DD, that could be an area for advocacy. But again, when we do network advocacy, we need to also make sure we're considering intersections. So we want to make sure that not only do we have providers who are competent to treat people with DD. That includes providers who have cultural competence in treating people who are LGBT, people who are Black, indigenous, people of color, people who are nonnative English speakers because people with DD also have all of these different identities and we want to make sure that we're not excluding portions of our community when we do this kind of advocacy.
And we've also seen we need to have rigorous enforcement, again, of the HCBS final rule. Unfortunately I don't believe there's one thing that might be worth exploring, but it's definitely up in the air is whether or not there's a private right of action under the HCBS private final rule, but even if there isn't, we need to be really like filing, prepared to file complaints under that rule when it finally comes into effect years from now.
And we also need to ensure that all efforts to promote healthcare among people with developmental disabilities — and this is the most important part — we need to make sure that efforts to promote healthcare among people with developmental disabilities include the voices of LGBT and Black indigenous people of color, people with the IDD, including people with IDD who have intersecting disabilities, nonnative English speakers, people with different immigration statuses, so that we can really make sure that we're taking into account. Sometimes it's hard to anticipate a lot of these intersecting issues if you're not a member of these communities, so we need to make sure that people are included in the room whenever we're trying to do advocacy that will do sort of systems reform.
With that, I am going to let Victoria take over.
SHARON KREVOR WEISBAUM: Thank you, Sam.
Yes. Victoria.
VICTORIA RODRIGUEZ-ROLDAN: Hello. I'm Victoria Rodriguez-Roldan. I am the senior policy manager for AIDS United, working in HIV policy.
One of the things I have focused a lot throughout the course of my career, as lengthy or as short as that can be given the fact that I am 32 years old, has been the topic of LGBTQ people, sexual orientation, gender identity, and racial justice within disability.
And primarily one of the things to keep in mind, like for example, one of the public issues that I have is around LGBTQ people with disabilities who when we look at the data, we look at the data around, for example, the 2015 U.S. trans survey found that 39% of trans people reported having a disability. I do believe that that figure was much higher than the traditional one in five figure of people having a disability in the U.S. that we talk about a lot in the movement. Obviously I think that is an understatement, that is an undercount, because it requires the person to self-identify as having a disability, and we know how many conditions are culturally not quite seen as disabilities despite their being so. An example, that same study found that 40% of trans people who were respondents had attempted suicide. Thus by extension we can assume that they've experienced enough emotional distress or mental illness from trauma and depression and so on to count as disabled. So I believe it is the majority.
There's an extent to which I have said before that the LGBTQ experience is inherently disabling because of the way society treats you, thus leading to trauma-based mental health disparities.
And I'm so sorry about the dog. She's a 75-pound hound (dog barking in the background). Yeah. She might have remembered the cat exists.
With that, it goes into another study. For example, 25% of queer students in one report survey found that they had reported some bullying over a natural or perceived disability that they had experienced.
LGBTQ people are more likely to have a disability, are more likely to have experienced disabilities partly because of their LGBTQ identity, and also what we see also at the same time, as Sam had sort of pointed out a little bit, that autistic people are much more likely to identify, which is another topic that has been touched upon many times, such as kind of for the entire autistic community a bit of widely known fact but not quite widely known outside which is why I've been trying to do the academic research.
And that brings us to the topic of conversion therapy, a little bit. Conversion therapy for the uninitiated is the attempt to change a person's sexual orientation and gender identity through, quote/unquote, therapies that are widely seen as a form of torture that has been banned in most states at this point. For minors at least. However, the states that have, have focused mostly on kids under the age of 18. Parents and adults can theoretically consent to them in theory. Notice I'm saying in theory. But you know.
The problem is that then you have adults who are under guardianship who can be coerced into conversion therapy by those guardians, most of the time parents or family members, and thus cannot be allowed to deem themselves.
The District of Columbia is the only state that has banned conversion therapy for those under guardianship. I've been working on bringing that up to other jurisdictions like New York, through a bill we are working on in New York.
And one of the topics beyond that, another topic that I would go into is that of when it comes to racial justice, we have seen how a majority of healthcare issues are treated for mental health issues end up intersecting a lot with the criminalization of people of color, especially Black people. A paper that should be coming out, it's currently under review and should be coming out in the next edition of the Drexel Law Review is around New York's assisted outpatient treatment program, also known as (inaudible). If you have the background, this law in 1999 a man with schizophrenia forced a woman named Kendra into the tracks of an oncoming train in the New York City subway. She was killed innocently. That murder — (dog barking).
One of the things that happens with that is that led to them saying they need to stop people from engaging in violence and so on. Long story short — (dog continues barking.) The Governor did the political — I'm going to keep talking while I feed the dog. The Governor signed Kendra's Law in 1999, which provided essentially what is called assisted outpatient treatment and has been copied throughout the country by most states.
What does this mean? It means that much like involuntary commitment, you can involuntarily coerce someone by a court order into outpatient treatment. Taking your meds, having to take blood work, and so forth. And it's more or less the dynamics of it in New York State are more or less like a criminal probation but highly medicalized basically.
But it compels you to go to treatment, mental health treatment, essentially.
With that in mind, I went into — (audio cutting out) — people who go around supporting institutionalization and so on. The good news is that New York State has kept on its website a vast treasure trove of all the demographics of all the people who have been subjected to these programs since 1999 for the last 22 years now.
In that time period, the bad news is of course a majority of the people in New York State are people of color who are being subjected to this. For example, at the state level, from Buffalo to Long Island, 38% of AOT recipients are Black. 27% are Hispanic. This is at the state level, which is much less diverse statistic demographic and population than just the city of New York, the five bureaus. If you were to limit it to the five bureaus, then that figure is 44% Black basically.
So an obvious question that arises is where are all the white mentally ill people basically. Because mental illness, for example, schizophrenia, which is the majority of people in the program, does not discriminate any more than cancer, for example. There are likelihoods here and there, but it will impact white people almost as much as people of color or any other race. So where are all the white schizophrenics in New York State if they're not in the hands of any of these programs, assuming they are likely to be refusing treatment or do not want to be treated or to be a danger to themselves and others, and what does that mean.
The end result, essentially they're more than likely to be under private insurance and less likely to be funneled into public hospitals and be seen by law enforcement leading to forced treatment. When they are the subject of 911 calls, the law enforcement welfare calls, they're less likely to be deemed less of a, quote/unquote, threat basically to be subjected to be seen as needing involuntary treatment by a court order.
This has led us to a situation where the entire system of involuntary treatment, New York being just one example, has become essentially another tool of control for people of color. It's just not typically the criminal system, but it is functioning more or less as such. This is also where we see a majority of the population under these court orders is male. 72% male in the state of New York, I believe.
New York is not alone. California, recently there's been a suit against Alameda County for racial discrimination due to disproportionate amount of Black people going into section orders through emergency rooms and hospitals. Alameda County insists they can't help it because that's just the demographic that is brought to them by police basically. Which again, even if we took them at face value, it's already telling you a lot of the problem there.
I'm going to stop before I keep on talking, and I'm sorry about having to feed a dog during that period. But beyond that, I will let us start moving towards questions. So yeah.
SHARON KREVOR WEISBAUM: So thank you. Thank you, Victoria.
I wanted to throw out a first question, and I hope people in the audience will put some questions in the chat or raise your hand.
But I wanted to ask both Professor and Victoria, following up on what Sam was talking about in terms of solutions. Since we certainly talked a lot about the intense barriers and repercussions that are going on. But what about some additional solutions? I know Sam started with some, but Professor, do you have some thoughts on that?
DANIELLE BEATTY MOODY: I do. I think from a research standpoint, one immediate solution that comes to mind is when I think about the National Institutes of Health, NIH, that's really our core funding arm, research funding arm of our government, we have institutes like the National Cancer Institute, the National Institute of Heart, Lung, and Blood. We have an institute that looks at deafness and other communication disorders. But we don't have one that is committed expressly to disability.
Ultimately what you will see across the institutes is that there is embeddedness of looking at limitations or chronic conditions or disability, but there isn't one that above and beyond the one that I mentioned that expressly looks at disability. So I think that that would be a core way to reach solution because we need science that can support policy. So I think that would be one that I would immediately suggest.
SHARON KREVOR WEISBAUM: Thank you.
Victoria, anything come to mind?
VICTORIA RODRIGUEZ-ROLDAN: I would say one of the solutions so to speak, it's really hard to come up with simple solutions for a problem that permeates the entirety of our society basically. So what I would point out is basically the need for a greater rethinking, for example, when we discuss the topic of conversion therapy, why are we thinking of disability as a separate movement unto itself that you basically all but have to choose instead of an integral element of the progressive movement. Why are we trying to separate the progressive system from the entire rest of the disability world?
And also when it comes to mental illness and the topic of mental health treatment, we need to entirely divorce the use of our law enforcement from it basically, completely. And start moving towards a situation where we can actually discuss as a real possibility. I'm not 100% sure I am supportive of it, but I would like to see an actual discussion option, the complete abolition of involuntary treatment basically. It has to be something that we may have to be seeing as negative in society rather than a positive, around Hippocrates.
SHARON KREVOR WEISBAUM: Are there any questions from the audience right now that we can pose to any of the panelists?
While you're thinking, I assume COVID, I mean, so much of what we have heard and read about during the COVID year seems to reflect what all of you are talking about in terms of the access issues. And I was just wondering whether anyone wanted to comment on that.
And yes, I do think we have a question from the chat.
SAMANTHA CRANE: I can talk about COVID too because, the fact that our advocacy on discrimination in rationing and access to support in hospitals. So almost immediately after the pandemic hit and we saw that hospital resources were being really strained, we saw states and localities that were putting in place or activating preexisting triage guidelines that were saying in the event that hospitals did not have resources to treat everyone, they would prioritize certain groups over others based on whether or not people had preexisting healthcare conditions that were seen as less likely to survive. And as a result, were being targeted for deprioritization.
And the disability community of course saw this as a disability rights issue and started advocating against these triage policies.
Immediately found that these issues could not be divorced from racial justice issues and aging issues because we were seeing age cut offs for prioritization of care. We were seeing people, conditions being excluded or deprioritized were health conditions that as Professor Beatty Moody pointed out are not equally distributed across race. Like people with chronic lung conditions or diabetes or other concerns were more likely to be Black indigenous people of color. So these triage guidelines had significant racial justice implications as well.
So the coalition of people who were trying to advocate against discrimination in the triage guidelines very quickly found that we had to be working with racial justice organizations. And I think that's a good example of how when we do advocacy, we need to be aware of these intersecting issues and bring people in to the conversation, because it's just really necessary.
And I saw the question about the acronym that wasn't recognized but I don't know which acronym. I think probably the home- and community-based services final rule? That's the rule that gives people rights in certain kinds of home- and community-based services waiver settings. And the reason why I called it upcoming, it was actually finalized in 2014, but the effective date keeps getting pushed back. So many of the requirements have not actually taken effect yet.
SHARON KREVOR WEISBAUM: One of the questions from a person who represents people with disabilities seeking equal access to healthcare wanted to know if you all had any resources on cultural competency since that's usually a requirement people push for in agreements. So they were wondering if there were resources that we could make available.
And also if anyone would like to comment on the change in administration in making more systemic changes. So maybe the first one. Any resources?
DANIELLE BEATTY MOODY: I can provide a little bit of a response to the first question.
So I know that across cities and settings, there are often action organizations that have taken up this particular work that you could invite in. So an organization could invite them in to do an assessment. So they would do a multitude of different things in terms of focus groups, one-on-one meetings, etc., to really get a sense of what the challenges are in that setting.
But also then to provide hands on guidance to developing those competencies and then ensuring that they actually are walked out. So for instance, in Baltimore there is the Baltimore racial justice action organization. And I know our department had them come in and I was able to see firsthand some of the really good work that they do around racial cultural competency more broadly.
So I would say that depending on where you are, these sorts of things are certainly really available across the country which is a great thing.
The second resource that I'll suggest is the American Psychological Association. On the APA website, you can often identify working papers that will sort of outline resources for cultural competency, and there's also an office that explicitly deals with disability associated with APA. So there, I'm blanking on the director's name, but I personally found her to be very helpful and found that office to be very helpful. So they would certainly be a resource in helping individuals to identify cultural competency services, organizations that could come in and provide such guidance.
SHARON KREVOR WEISBAUM: Thank you. Anyone want to take on the change of administration and what you're hoping for? Or what you see as possible?
And there's another question if you don't want to take that one on. Let's say. Larry Berger: Can anyone comment about how this is approached in other countries? The EU? Countries that have ratified the CRPD?
SAMANTHA CRANE: I can talk a little bit about the administration. We definitely are hoping that some of the discriminatory regulations that were passed in the last administration, like the religious refusals rule, will be rescinded. That might take some time, but hope springs eternal.
I think that we just saw a really good panel on DOJ presenting on Olmstead enforcement. I think some of these sort of action steps are going to take federal enforcement, like the home- and community-based services final rule. Mostly going to be enforced by the agencies. I think that we can get some good guidance from the Department of Health and Human Services on network adequacy.
But I think some of this is going to need to come from within as well, and I sort of mentioned this in my last, at the end of my presentation, but I think the disability advocacy community, especially people who are involved in systems or advocacy are going to need to do a better job of anticipating these issues when we do advocate for systems change.
So I don't think the administration change is going to make it easier for us to get the results we want, but we also need to make sure that we're all on the same page about the results we want and the issues that we need to take on. I think Victoria's point about the racial discrimination and outpatient treatment, outpatient civil commitments, is a good example of that. Because we're seeing even in democratic administrations, we've seen big pushes towards things like outpatient civil commitment and other things that are seen as like providing people with services. But there's huge problems both from the disability rights perspective and from a racial justice perspective that the community is really going to need to raise and bring to people's attention in order to fight those kinds of efforts.
SHARON KREVOR WEISBAUM: Great. Anyone else on the panel have any closing remarks? I am very glad to have Professor Beatty Moody with us at tenBroek. Hopefully she will come back and join us again.
Anyone else before we close up?
DANIELLE BEATTY MOODY: I see a note here from one of our attendees, and it's to everyone. And they're referencing cultural competency training could be forthcoming. So I'm hoping, you know, sort of at a national level, so I really would hope that that would occur, particularly in these healthcare and health training settings. That's really all I wanted to say additionally. I think that would make a big difference because certainly we know these challenges that folks who live with disabilities experience from a public health perspective, it really has to be a downstream shift that occurs. So that means that the structural changes have to occur, and then there would be sort of maybe a domino effect, I might say.
At the same time, we still live every day. So we need people to behave differently and to leave space and to offer respect. So that's to me where the cultural competency can come in so that the two can meet so that the environments that people are in and moving through can feel more welcoming.
And at the same time, we come in with regulation and policy, right, that can help to reshape these environments in terms of access, resources, etc. So that's like the one piece that I would certainly add that is a hope that I have. And thank you for having me again.
SHARON KREVOR WEISBAUM: Very good.
Well, thank you. Lou Ann, I'll turn this back to you.
LOU ANN BLAKE: All right. Thank you so much. Thank you very much to our moderator, Sharon Krevor-Weisbaum, and to our panel members, Danielle Beatty Moody, Samantha Crane, and Victoria Rodriguez-Roldan. It was really great to hear about the research and the work that you are doing.
This is a really important topic, and we really appreciate that.
Coming up next, our final session of the day will be a workshop session, starting at 4:00. So please consult your agenda for the workshop topics and for the Zoom links to the rooms for each of the workshops.
So thank you very much. Look forward to seeing you in the workshops.