Impact of the Intersection of Developmental Disabilities and Other Population Profiles on Experiences with Discrimination Report From Qualitative/Narrative Research Project 2496B Prepared for: The Minnesota Governor’s Council on Developmental Disabilities Prepared by: MarketResponse International 8 August 2022 INTERSECTIONALITY STUDY TABLE OF CONTENTS * Research Overview and Objectives * Summary and Conclusions * Why this research is important * Definitions of intersectionality and related concepts * Discrimination experiences * Appendix INTERSECTIONALITY STUDY RESEARCH PLAN OVERVIEW 1) Literature review: The research began with reviews of studies, reports, including legislative reports, and journal articles that recognize the prevalence of disparity issues in racial and ethnic communities, and among individuals with developmental disabilities that include data from other states and comparisons across states; and policies, best practices, and strategies to address and eliminate disparities. (See article list in Appendix) 2) Internal Qualitative Interviews: 60-minute interviews among 4 council members who identify as coming from marginalized communities based upon race, disability status, and/or LGBTQI+ status. Their perspectives and input helped guide this study. 3) Narrative Research Focus Groups (FG) and 1:1 Interviews: * FG in North Minneapolis, n=5 * Partners in Policy narrative workshop, n=19 * FG at Somali Community Resettlement Services, Faribault, MN, n=20 * 1:1 in-depth interviews, n=5 Total participation: n=49 * 28 females, 19 males, 2 Non-binary * 27 self advocates, 24 parents or family members Ethnicity 13 ? Black 16 ? East African immigrant 4 ? LatinX 2 ? Asian 12 ? White 2 ? 2 or more ethnicities All respondents’ quotes, from both advocates and self advocates, are shown in italics. INTERSECTIONALITY STUDY OBJECTIVES From this research we seek to explore . . . The Nature of Discrimination and all its forms How it is Experienced by various groups with intersecting profiles Impacts and Results both short-term and long-term . . . and use the insights to: * Uncover the attitudes and behaviors among public and private entities, and the general population, that contribute to discriminatory practices and negative outcomes; * Demonstrate the benefits to society in general of looking at people with developmental disabilities in a holistic way that incorporates an appreciation for their unique and diverse backgrounds and experiences; * Identify the alternative policies, procedures, and behaviors that will help eradicate discriminatory practices and better serve the needs of people with developmental disabilities who experience intersectionality with other attributes. SUMMARY People with developmental disabilities, especially those who are a part of other marginalized communities, experience various forms of discrimination, such as: * Rude and disrespectful treatment by persons in positions of providing various services to others; * Barriers to access and exclusion, happening in schools, workplaces and other social settings, giving people with developmental disabilities the sense that they’re not wanted, or not even acknowledged; * Strict enforcement of rules, policies or procedures, that impose barriers to access to services, or are used as excuses for not offering any kind of needed accommodations. * The deck is stacked even more against black and brown people trying to get ahead in our state, because of flaws in some State policies, and due to more blatant exploitation in areas related to housing and the penal system. Instead of being seen as people, what is seen is their disability, their skin color, or someone who is “less than.”  Being a Black person with a disability. . . It really did hurt me when people were looking at my disability, and not looking at me. (But my disability) is not who I am. CONCLUSIONS For progress to happen, among the general population of Minnesotans there needs to be: * More empathy and appreciation for people with developmental disabilities and other marginalized communities; We have so much to teach the world because we are forced to survive in a way that is different, because our access needs aren't met every day, because we have to fight to live. And that leads to a special kind of insight and a special kind of knowing and understanding and navigating the world that others won't experience. * Greater awareness of our own internal implicit biases and prejudices, and the impacts on the ways we think, talk about, and treat people with developmental disabilities and other marginalized communities. * RECOMMENDATION: Next steps for research If progress in reducing discrimination in Minnesota is the goal, then there needs to be a research system put in place for obtaining benchmark (starting point) measures of incidences of discriminatory behaviors and practices, and tracking changes over time. Using the insights gained from this initial qualitative/narrative study, the next step for research would be to design the survey instrument, sampling and analysis plans, then complete the benchmark survey for this longitudinal tracking study. WHY THIS RESEARCH IS IMPORTANT There are strikingly persistent disparities in employment, income production and net worth between people with and without disabilities. Those disparities remain even larger for BIPOC Americans with disabilities (Black, Indigenous, and people of color). National Disability Institute, “Race Ethnicity and Disability” August 2020. (p.10) People with disabilities experience discrimination in different ways. Recognizing differences in experience is noteworthy as is acknowledging the widespread prevalence of disability-based discrimination. Here are some examples: (Research Brief: Experience of Discrimination and the ADA | ADA National Network) (adata.org) Employment Fewer expressions of employer interest among those with disabilities * Not getting hired * Being denied promotions * Extended probationary periods * Feeling underestimated * Insulted, excluded * Never achieve leadership role Housing Discrimination in access to housing and the community * Living in overly restrictive environments * Lack of privacy * Living in areas designated solely for people with disabilities * Difficult to get involved in the community Social and Public Spaces Negative attitudes, misconceptions, ignorance regarding people with disabilities * Viewed unfavorably * Subjected to offensive statements * Barriers rooted in negative attitudes * Barriers to voting, including voting machines not accessible We have so much to teach the world because we are forced to survive in a way that is different, because our access needs aren't met every day, because we have to fight to live. And that leads to a special kind of insight and a special kind of knowing and understanding and navigating the world that others won't experience. And yet, it's still so hard to find information about disability because it's often left behind and invisibilized. GCDD Council Member DEFINITION OF INTERSECTIONALITY Intersectionality, a term coined by legal scholar Kimberlé Crenshaw, is . . . “a lens, a prism, for seeing the way in which various forms of inequality often operate together and exacerbate each other.” Crenshaw originally used the theory to explain the systemic discrimination against Black women, individuals who could not separate the “women’s experience” from “the Black experience,” in a legal setting. Scholars in the field of sociology and philosophy have since expanded the intersectional conversation to include the disability community. However, . . . little research has focused on how this intersectionality plays out in the economic sphere. (16 p.3) Intersectionality implies the need to look at individuals in a more holistic way Being a Black person with a disability, I mean some people can view me in a very stereotype way. . . It really did hurt me when people were looking at my disability, and not looking at me. (But my disability) is not who I am. It's something a part of me. It's something that I have to live with every single day. GCDD Council Member I also look at intersectionality as more of a framework of how a person’s attributes affect their social status, affect how others view them, their political identities. GCDD Council Member WHAT IS ABLEISM Ableism: Discrimination against people with disabilities Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require 'fixing' and defines people by their disability. Like racism and sexism, ableism classifies entire groups of people as 'less than,' and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities. Ashley Eisenmenger, Access Living, 12 December 2019 When racism and ableism intersect: Growing up, I was usually the only person who had a disability in my class, the only person in a wheelchair, one of the only people of color. I felt very isolated from a very, very young age. . . The way that I internalized the messages that I received really told me that I was wrong. GCDD Council Member A DEFINITION OF DISCRIMINATION Discrimination is the act of making unjustified distinctions between people based on the groups, classes, or other categories to which they belong or are perceived to belong. * Occurs when individuals or groups are unfairly treated in a way which is worse than other people are treated. * Involves restricting members of one group from opportunities or privileges that are available to members of another group. Privilege is a special right, advantage or immunity granted or available only to particular individuals or groups. Oxford Languages Privilege means that you turn on your television and you see characters that are representative of who you are. Privilege means that you can walk into your local Target, and you can find products ? like hair care products ? that meet the needs for your culture. Privilege means that you can walk into that same Target and not be tailed by security. Privilege means that you have no problem accessing healthcare that meets the needs of the communities that you belong to. Quotes from GCDD Council Member VARIOUS FORMS OF DISCRIMINATION Three general categories and 6 forms of discrimination were identified from the secondary research review.* *Examples of each form of discrimination are provided in the appendix. Individual Overt prejudice - Undisguised expressions of feelings and beliefs about the inferiority or undesirability of certain groups (racial slurs, verbal or physical harassment, bullying, threats to personal harm, etc.) Implicit bias - Attitudes or culturally embedded stereotypes towards people, held with or without our conscious knowledge Social Social exclusion - Preferences for members of one’s own group can result in segregated networks within organizations, and exclusion from social interactions and events Organizational barriers - Physical obstacles, and policies or procedures that limit opportunities or access to services, imposed by groups or organizations Systemic Institutional barriers - Institutional policies, regulations or rules written in a way that discriminate against marginalized communities Cumulative Disadvantage - Legacy of historical discrimination in housing, education, lending markets, etc., maintain high levels of wealth inequality through the intergenerational transition of advantage HOW DISCRIMINATION IS EXPERIENCED Five themes emerged from the stories describing how the various forms of discrimination are experienced. Service without a smile Segregated, isolated, excluded Shamed, dismissed, ridiculed Policies before people Flawed policies, exploitative systems Service Without a Smile Rude and disrespectful treatment by persons in a position of providing some kind of service to others. The absence of any attempt at empathy, or effort to provide any level of accommodations for people with disabilities, is evident in these stories. I have a friend, she's white. Most of the time she comes with me, and she asks a lot of questions of them. To me they say, “This is what we have. These are the rules.” But when my friend is asking the same questions, the answers are coming out totally different. * Rude, Disrespectful Treatment in Waiting Room At a healthcare clinic an American citizen who immigrated here many years ago from India, is waiting for an appointment with her young son, who uses a wheelchair. The receptionist shows no regard or empathy for the needs of her son, who has sensory sensitivities. * Her son was fearful of a service dog that was also in the waiting room * The receptionist would not let the woman take her son outside for a walk, to calm him * After a long waiting period the receptionist told the woman she was waiting in the wrong place, but offered no apology * Rudely treated and abruptly discharged from hospital after heart procedure The hospital itself is a great hospital. There are many surgeons, other medical personnel that are dedicated to the lives of individuals ? lives not color. But there are some there that should not be there; they have masks on. I mean, the face and the person that I'm communicating with is not that person. They're racist, discriminatory, disrespectful, no regard for humankind beside themselves, or their race. An older Black woman (self-advocate and parent of son with autism) had an overnight stay in a hospital after having a heart procedure. * In the morning she called down for a breakfast tray, but it never came; * She called down to the kitchen, they said she would get a lunch tray at 2:15pm; * Before the tray arrived, she was told that she was discharged, so she proceeded to wait for the tray, intending to leave after she had her meal; * But a half hour later, before the tray arrived, security arrived with another staff person and told her she had to leave immediately, saying in a threatening tone, “If you don't go, we're going to remove you." * Sabotaged service by auto shop in small town He grew up around those type of people, being the only Black, and all that stuff. But he's found a way to somehow continue to live with those people. He's found a way to not let it get inside of him, to avoid the Black emotional pain. Perhaps a most extreme example of Service Without a Smile was this story told by a Black woman about an experience her adult son (with autism) had in small town Minnesota. * He bought four new tires from a reputable tire place, which they had installed, for a total cost of approximately $400; * Realizing he needed more air in the tires, he went back to the tire dealer, but they would not provide him with that service; * He got his tires filled at another location, where they found one of the bolts was loose; * It was obvious to those who found it that the bolt was left loose on purpose, with the potential of causing great damage or even an accident. Segregated, Isolated, Excluded Barriers to access and exclusion are happening in schools, workplaces and other social settings, giving people with disabilities the sense that they’re not wanted, or not even acknowledged: Segregated Schools Students who require special education services are experiencing more exclusion and segregation from other students, even in well-funded and resourced districts. Not Accessible Black woman trying out a new restaurant finds access blocked by tables. Staff and customers are oblivious to the fact that they are blocking access for people using wheelchairs. Rejected Services Hispanic child with Down Syndrome rejected by day care providers because of his condition Job Discrimination Adult male believes he was fired from his job after 6 years employment, because of his developmental disability and he is Latino. * Schools heading in the wrong direction – from inclusion to segregation They don't go to recess with their peers, they go to separate time for the kids with special needs. It's basically just lots of segregation, especially in a district where you wouldn't think it would happen because they have lots of funding and resources. - White female parent o With pressures on principals to meet standards and atone for low test scores, along with staffing crisis and overwhelmed teachers, attitudes have hardened towards students with disabilities, who are seen as distractions to general education students. o There is a common feeling that progress of inclusion in schools is in reverse. In some schools, students who require special education services are being moved to secluded classrooms away from others • Separate bathrooms and activities • No music, art, PE class, inaccessible fieldtrips o Students with disabilities are feeling dismissed, abandoned, shame and humiliation, while our schools are teaching other students about discrimination and segregation. • Even in well funded school districts, students with disabilities are granted limited resources and opportunities o Story from a white female parent: o My son goes to (suburban) schools. They have a lot of funding, and they moved my son's special education program to a brand-new school. They had big, open spacious classrooms with windows for all the other kids, and they put my son and his classmates in a conference room with a divider. They do not allow the students with disabilities to go to music, technology, physical education, media center, art. They made the field trips inaccessible to children with wheelchairs and with sensory processing difficulties. They don't go to recess with their peers, they go to separate time for the kids with special needs. It's basically just lots of segregation, especially in a district where you wouldn't think it would happen because they have lots of funding and resources. Making simple accommodations to create a classroom that is wheelchair accessible ends in a student with disabilities forced to crawl. Starts with a fight to make all areas of the classroom available to a student who uses a wheelchair. My daughter is nine years old, and every year during IEP meetings we fight to have enough accessibility within the classroom for her to navigate her wheelchair to all areas. Seemingly easy requests. Days later the majority of classroom is no longer wheelchair accessible. Days later I stop in and come to find out they've changed the entire layout in the classroom. So now she has access to about a quarter of that entire classroom. And then we are told, "Well, she can still get to everything." Then I say, "Okay, how was she getting to everything?" Their response: "Well, she just crawls.“ Outcome of safety concerns, hurt feelings, distrust with the school. They eroded my trust. This school should be looking out for her safety while she's there and to make her feel included. I'm hurt because she is treated like the lesser of a human. I wonder, “Is your hand going to get broken today? Are your fingers going to get broken? Are you going to get trampled in the hallways? Are you going to be able to get into a bathroom when you need to use the facilities? Outdoor restaurant seating blocks entrance for person who uses a wheelchair, and is upsetting for many customers I'm rolling up to a restaurant and I realize that there's two tables with six to eight people each that are directly on the sidewalk where I need to access the building, which is a violation of the ADA. Those people had to get up so I could get into the restaurant. I go and eat my food, and I come back out, and I have to make these people move again! And now I am upset and the people at the table felt bad too. Awareness and acknowledgement leads to action One of the tables was like, "I don't want to sit here. I don't know why we're sitting here. I feel horrible that we're blocking the entrance. This is not okay." And I'm like, "You know what, if you want to be an ally, go in there and tell them that. Don't tell me that. Go tell them that this has ruined your experience here and that it's not okay for them to do that.“ And so, they did, which I was grateful for. Latino man with disabilities let go after working the night shift for six years I was discriminated at work and fired because of my disability. I feel sad and I want to have courage. I was working for 6 years, and I am depressed since I was let go. I was discriminated by other workers, but mainly by the Line Leader. I was working the night shift and he wouldn’t change me to mornings, and after that long I should be. I talked to the company President about it, but I was let go. Shamed, Dismissed, Ridiculed Those with disabilities are sometimes not seen or treated as people. What is seen is their disability, their skin color, someone who is less than.  They are feared, labeled other, and treated differently.  Encounters of being shamed, dismissed, and ridiculed are not limited to just going out in public or online, it can occur in places that are supposed to be safe havens: hospitals/doctor’s office, schools, and even churches. Going to the store or a restaurant is not a simple outing or a nice time with family, it becomes an unwelcomed negative experience because of the unconscious behavior of other patrons. When out at a store with my son with Down Syndrome, I sense that people are saying something because he is disabled. It really makes me feel uncomfortable because they look at me different. A lot of people, not everyone, can be ignorant and negative. A lady came up to me in a restaurant once, and just said, “He looks different!” Sometimes it’s very extreme, extreme like where I can’t explain it, like they think a child with Down Syndrome is not a child, it’s like a child of a different planet. Her disability and the way she looks attracts negative attention. Listening to music is seen as a disruption, and the color of her skin is seen as a threat to those around her. They're looking at you different. You're this young Black girl from the north side, and they know you are low income, so they treat you differently. There's a lot of jokes and memes online about the person . . . “who walks around with headphones, singing their music out loud.” It's like they're terrifying. I've had people laugh at me just walking around my neighborhood or downtown. I've had people take out their phones and record me even when I'm not singing my music out loud, but just using my hands to keep time with the music. I've had people record me and laugh at me. I'm just being treated like a joke. People cross the street when I'm walking on the same sidewalk as them. It's hard to describe these small social interactions, because they're so small, but they feel so big. White fear of Black people I feel like even if I wasn't autistic, even if I didn't have the behaviors associated with my autism, a lot of white people have an inherent fear of Black people when they see them on the street. It's not like, "Oh my God, I see a scary monster." But more like, "What is this person going to do to me?" There's not this automatic thought that crosses white people's mind when they see another white person, unless they're like holding a knife or something. But in white people's mind, blackness is a weapon. With awareness of her autism, doctors treated her like she was not capable to make her own medical decisions and dismissed her wishes for certain important decisions during labor. Chart notes from the doctor focused on her speech and how she dressed. The doctors treat me completely different if I have told them I am autistic. If they don't know that I'm autistic, then it's just a world of a difference. And when they do, I have read their chart notes, and the way they talk about me is just super dehumanizing. I know that they're medical notes, but they'll say things like, "The patient could speak clearly." But there's nothing that would make it so that I couldn't speak clearly. But that's something that they find necessary to note. Clinicians not aware of special treatment needs/concerns for patients with autism My kids have gone through many sedated medical procedures, and there's a higher risk for my children with autism. Every time I speak with the anesthesiologist and say, "Are you aware of the risk involved with sedating our children or sedating somebody with autism?” Then they'll start questioning me: “Well, what are your concerns?” Well, my concerns are that my child is alive at the end of the day. Toxic IEP meetings I haven't brought my son to the IEP meetings, mostly because they're so toxic. I don't think he can handle it yet. We need a safer environment to expose him, to help teach him how to advocate for himself. It would just beat him down, I mean, it beats me down. It's just going to make him doubt himself. Lack of understanding for Black girl with autism It's weird being autistic in school. I think the number one thing that was an issue for me in school was needing stimulation through music, and needing to walk around in school, and making friends, and being social, and stuff. It's hard when you get kicked out of school for listening to music while you do a test, but you get an A+ on the test. I was doing well in all my schoolwork but didn’t get the opportunity to do all my schoolwork because of disciplinary problems. Setting students with disabilities up for failure I have spoken to school board members and members of the State Senate about this: Special Ed students are divided at schools, and those (students) with more severe disabilities are taught to clean the school. They are being groomed to believe this is what they can do. This policy in the school is setting these students up for failure. Student’s autism is shunned, rather than embraced Charter school did not protect my daughter from bullying. School administration does not want to make waves in the community for an autistic student. Our family’s mental health has tanked. We really struggle to help her re-accept who she is, to love her autism as part of who she is and what makes her a unique individual, versus something that makes her less. Policies Before People Strict adherence to the rules, policies or procedures are enforced on people with developmental disabilities (and other marginalized communities), imposing barriers to access to services, or as an excuse for not offering any kind of needed accommodations. From bad to worse spiral for Latino immigrant with disability: o Removed from day program for not wearing a mask (and because he’s Latino?) They removed my (50-year-old adult, non-verbal) brother from the day program because they said he was not going to wear his face mask. So now, my brother has a lot of depression and other issues because he was very used to attending the program. He would get picked up at 8:00 and dropped off at 2:00, he had a routine. He was the only one asked not to go back when the program reopened. He was the only Latino, but I don’t want to say it’s because of that. o 2) Insurance coverage denied after injury Since he can’t stay in one spot, he went out of the house and got hit by a car. And when he is outside at a certain time, he has to be wearing a certain kind of color, and since it was already 7:00 pm, the insurance said they weren’t going to pay the medical bills because he wasn’t wearing the color he should. The lady who hit him said she couldn’t see him because of the color he was wearing. So, we do feel discriminated. My mom is 83 and she is slowly paying for his medical bills, but she feels desperate because she can’t pay. o 3) Immigration process curtailed We are waiting to see what other excuses the day program is going to come up with. It’s pretty much immigration papers because he is undocumented. Someone at the program was helping him get the legal documents, but now they stopped. The laws are changing, so now my mom has to provide for him 100%. It used to be that with a disability he would receive documentation when my mom did. Now my mom has documentation, but he doesn’t. They are making it impossible for him. Unbending lifeguard denies use of water slide for child with autism The YMCA, and YWCA, is a place for us disabled people with disabled children, that's supposed to be the right place you go to, right? My son loves swimming, and they have a nice pool and a water slide, which is his favorite thing to do. In the beginning, everybody can get up to the water slide and play whatever way they want. But over the years, their rules got stricter. So now you have to pass a swim test in order to go to the water slide. As we went there more and more, we got to know all the lifeguards there. And most of them are very accommodating, nice to him. There's one lifeguard, however, that seems to have some problem with my son. She would not let my son use the water slide at all. I mean, we try to negotiate with her. We have one parent at the bottom of the slide, and the other parent would walk up to slide with him; and she still wouldn't let him use the water slide. I asked her why. And she said, "Because he's Michael, because he is him, he can't use it.” And that's the moment I broke down to cry. She could have said, "Oh, because he can't swim." Or "I'm concerned for his safety.” But she didn't say any of that. She said, "Because he's Michael." This person is lifeguard. She is white. But I'm not sure (her actions are) because I'm Asian or because my son has autism. It could be both. We’ll never know. Flying in the unfriendly skies ? no accommodations for 3-year-old with autism About a year ago I was flying to New York on (AIRLINE) with my son at the height of COVID and mask mandates. My son was three at the time, and due to his sensory issues and his diagnosis, he couldn't wear a mask for the entire flight. I had arranged accommodations in advance with (AIRLINE), letting them know my son had a diagnosis. I would continue to try to encourage him to wear his mask, but it was likely that he wasn't going to be able to wear it for the duration of the flight. Our first flight was fine, but when we got to Detroit, we were hassled by the airline employees, the flight attendant, and they held up the flight. We didn't leave for an hour because my son wouldn't put his mask on. They were threatening to kick us off the flight. They were making announcements over the loudspeaker, clearly indicating that the reason we weren't leaving was because of my son! And I refused to get off the flight and essentially was like, "You're going to have to drag us off the flight. I arranged accommodations!” It was also one o'clock in the morning in Detroit. And I wasn't a fan of getting off and being stranded in a city I didn't know, with my three-year-old autistic son. After about almost two hours, they finally got in touch with a supervisor, who was like, "No, she's made accommodations and he can stay on the flight." And we were able to stay and go to our destination, but it was very stressful for my son. They really were just rule driven and not willing to give any accommodations. Flawed policies, exploitative systems Unintended negative consequences reveal flaws in the State’s policies designed to help attract more PCAs to assist people with developmental disabilities. And due to more blatant exploitation in areas related to housing and the penal system, the deck is stacked even more against black and brown people trying to get ahead in our state. Clash of family cultures for Somali immigrants brings discrimination to finding housing options o Here in Faribault, there are white communities and there are Black communities. The whites typically have 2-3 children, while Blacks may have much larger families. But when we ask for help finding a 4-bedroom house, they say no, and that the only solution for us is to find housing in the metro area. They just want us to leave. It’s discrimination. They always say, “You’re Black, you do not belong here.” Waivers are insufficient for attracting PCAs and other service providers o The State of MN has an employee crisis among healthcare workers, including PCA’s, positive behavioral experts, and staff in state-run group homes. * For staff in state-run group homes, the State has boosted the wages to $26 dollars an hour, with full time benefits for part-time workers, and a $2,000 signing bonus. * Those using waiver services, a fixed amount, can only hire people at $12-$15 an hour; * and they cannot offer benefits – they can only pay what the county says is okay to pay. * This incentivizes putting people with developmental disabilities in group homes, which is institutionalizing. We need to band together and have a class action lawsuit against the State of MN because they are limiting our options so bad. Prison system siphoning money away from low-income Black communities (the census counts prisoners at their place of incarceration) o For the census you have to be (living) in the population. The thing is, when people are in prison, they can’t use their home address. And so, it doesn’t ever help their community. And then their community is always blamed for being poor, but you’ve got them locked up over there in some small town. And that’s why places where the prisons are located are beautiful, because they’ve got that money. These towns where the prisons are, they count the brown and black bodies in there as minorities that live in the city. They get census money. I found out that’s in federal law. It’s in federal law. So that’s the system working to take care of themselves. Landlords taking advantage of immigrant populations in their community o We signed a 12-month rent contract, but they raised the rent before the contract has ended. I was going to get help from a lawyer in Rochester, but my wife said if we get help from a lawyer, our landlord will tell all the other landlords in the area, and they will all not rent to us, and we’d have to move. So, we decided not to use the lawyer. o The landlord painted our apartment. I felt he should pay because he owns the property. But no, he said I would have to pay, $620. I was told, “If you don’t pay this, you will have to move out.” COVID was still happening, so there were no other apartments available. I was forced to pay this amount. If you complain to the landlord about anything, they will evict you. You need to just keep quiet and pay your rent. House with lead leased to Black woman in Minneapolis o They rented me the house knowing there was lead in the house. I did my research, and I found out that they had applied for a lead loan. So you see, Hennepin County knew there was lead in the house too. So I go to court. There's records showing there is lead in the house; however, it was already decided that I was not going to win that case. They've still got my $1200 because the judge wouldn't give it back. Has not yet given it back. The system worked, because the system was designed to work in the inner circle. The system is designed to keep Black people out because Black people are not supposed to ever prosper in Minnesota. INTERSECTIONALITY STUDY Qualitative/Narrative Research APPENDIX PHASE 1: LITERATURE REVIEW Community Event PowerPoint 2021.06.17 Frederick A, Shifrer D. Race and Disability: From Analogy to Intersectionality. Sociology of Race and Ethnicity. 2019;5(2):200-214. doi:10.1177/2332649218783480 HCBS Racial Disparities Forum Report 2021.07.06 HCBS Racial and Ethnic Comparison Report – Quantitative 2021.03.26 HCBS Stakeholder Feedback Report to DHS – Qualitative 2021.02.12  Helmstetter, Craig. (2021) Discrimination is common nationwide—and even more so for Black, Indigenous, Latinx and Asian Minnesotans — APM Research Lab https://www.apmresearchlab.org/blog/mdc-survey-discrimination-in-minnesota-and-us Intersectionality and Marginalized Study (FFY 2022-October 1, 2021 to September 30, 2022) Intersectionality of Disability and Other Identities & Implicit Bias - GIVE Guide https://teachwithgive.org/resource/intersectionality-of-disability-and-other-identities-implicit-bias/ Pager D, Shepherd H. The Sociology of Discrimination: Racial Discrimination in Employment, Housing, Credit, and Consumer Markets. Annu Rev Sociol. 2008 Jan 1;34:181-209. doi: 10.1146/annurev.soc.33.040406.131740. PMID: 20689680; PMCID: PMC2915460. Parker Harris, S., Gould, R., and Mullin, C. (2019). ADA research brief: Experiences of discrimination and the ADA (pp. 1-6). Chicago, IL: ADA National Network Knowledge Translation Center. Public Hearing - Utilization of Services for Persons with Developmental Disabilities by Minnesotans of Minority Race and/or Ethnic Origin Neal, Rebecca; Block, Lanise (2020). Special Education Equity Communities of Practice Project : Report to Aaron Barnes and Alex Migambi. Minnesota Publication 20-0711. Shavers VL, Fagan P, Jones D, Klein WM, Boyington J, Moten C, Rorie E. The state of research on racial/ethnic discrimination in the receipt of health care. Am J Public Health. 2012 May;102(5):953-66. doi: 10.2105/AJPH.2012.300773. PMID: 22494002; PMCID: PMC3347711.  National Disability Institute, August 2020 Race, Ethnicity and Disability: The Financial Impact of Systemic Inequality and Intersectionality https://www.nationaldisabilityinstitute.org/wp-content/uploads/2020/08/race-ethnicity-and-disability-financial-impact.pdf  National Research Council (US) Panel on Race, Ethnicity, and Health in Later Life; Bulatao RA, Anderson NB, editors. Understanding Racial and Ethnic Differences in Health in Late Life: A Research Agenda. Washington (DC): National Academies Press (US); 2004. 7, Prejudice and Discrimination. Available from: https://www.ncbi.nlm.nih.gov/books/NBK24680/ Research Report for the “Family Support 360 Grant” Okun, Tema. White Supremacy Culture, dRworks www.dismantlingracism.org Updates of Terminology of Sexual Orientation and Gender Identity Survey Measures 2021-07-12-data-collection-workgroup-minutes_tcm1143-492944.pdf (mn.gov) Utilization of Services for Persons with Developmental Disabilities by Minnesotans of Minority Race and/or Ethnic Origin VARIOUS FORMS OF DISCRIMINATION Three general categories and 6 forms of discrimination were identified from the secondary research review.* Individual Overt prejudice - Undisguised expressions of feelings and beliefs about the inferiority or undesirability of certain groups (racial slurs, verbal or physical harassment, bullying, threats to personal harm, etc.) Implicit bias - Attitudes or culturally embedded stereotypes towards people, held with or without our conscious knowledge Social Social exclusion - Preferences for members of one’s own group can result in segregated networks within organizations, and exclusion from social interactions and events Organizational barriers - Physical obstacles, and policies or procedures that limit opportunities or access to services, imposed by groups or organizations Systemic Institutional barriers - Institutional policies, regulations or rules written in a way that discriminate against marginalized communities Cumulative Disadvantage - Legacy of historical discrimination in housing, education, lending markets, etc., maintain high levels of wealth inequality through the intergenerational transition of advantage DISCRIMINATION EXAMPLES - EXPERIENCES AND IMPACTS The Nature of Discrimination Individual - Overt prejudice How it is Experienced - Women in elective office have become the go-to target . . . The threats arrive by mail, email, voicemail and social media. Hateful comments are shouted out of a car window or in line at the grocery store. . . . Impacts and Results - Many fear the threats and intimidation will prompt some women to step aside from politics or decide against running for office in the first place, which could chip away at the historic gains they've made in Congress and state Legislatures. The Nature of Discrimination Individual - Implicit Bias How it is Experienced - Micro-aggressions – everyday subtle, intentional or unintentional insults and sensitive comments or rude things that people say. It’s casual ableism that’s so pervasive in our community that just goes unseen and unacknowledged. Impacts and Results - The narrative in our society is that people with disabilities are either some inspiration to make other people feel better about themselves, or that we’re to be pitied. The Nature of Discrimination - EXPERIENCES AND IMPACTS Societal ? Organizational Barriers: some examples: o Racial/ethnic disparities do exist in how people access HCBS.* Commonly identified barriers included: * Lack of knowledge about services available, eligibility, or how to access them * Organizational barriers (e.g., waiting lists, lack of referrals, communication difficulties) * Geographic barriers * Cultural misalignment of services Result: Home and community-based services are not reaching many BIPOC individuals who qualify and are in need of those services. Source: Evaluating Racial/Ethnic Disparities in HCBS Assessments, Project Overview 10/21/2021 * CPS (Child Protection Services) is a great example. If there's a white parent of a child with disability that's struggling, a case manager's first thing is they're going to offer more supports, they're going to offer services, they're going to recommend support groups. If a Black parent has a child with a disability that's struggling, they're more likely to be referred to CPS. It's like in the autism community, young Black boys are more likely to be diagnosed or labeled educationally with emotional behavioral disorder, rather than autism. (Council Member) * Subminimum wages for people with developmental disabilities: I'm hoping that we make some progress in Minnesota to eradicate subminimum wage for people because it just plays into ableism. People with disabilities aren't worth a bare minimum wage, and it does play into capitalism. If you can't produce what able-bodied people are producing, then you don't deserve to get paid, even though you still show up, and I would argue, give the same amount of effort. (Council Member) * Wage impact when race intersects with disability: I know that even when you do work for competitive wages, you just still face so many barriers. As a Black woman with a disability, I know, statistically, I'm being paid way less than if I was a White able-bodied man. (Council Member) The Nature of Discrimination Systemic - Cumulative disadvantage How it is Experienced - The national literature review found that Black, Indigenous, and people of color (BIPOC) have uneven access to care opportunities due to lack of insurance and ability to pay for many HCBS programs . . . Impacts and Results - . . . which may currently be exacerbating racial/ethnic disparities in access instead of decreasing them. HCBS Stakeholder Feedback Report to DHS-Qualitative 2/12/2021 The Nature of Discrimination Individual - Implicit bias How it is Experienced - Condescending tone of white providers/staff, such as references to “you people” towards African American women while white patients who arrive later (without an appointment) are treated before them. Impacts and Results - Unfavorable healthcare experiences The State of Research on Racial/Ethnic Discrimination in the Receipt of Healthcare (nih.gov) The Nature of Discrimination Organizational - Institutional bias How it is Experienced - In an audit study of 273 specialty practices in Cook County, Illinois, patients with Medicaid-CHIP (Child Health Insurance Program) waited 22 days longer for an appointment than did privately insured patients. Impacts and Results - Unfavorable healthcare experiences The State of Research on Racial/Ethnic Discrimination in the Receipt of Healthcare (nih.gov) INTERSECTIONALITY STUDY - Qualitative/Narrative Research Thank you! The preparation of this publication was financed in part by grant number 2101MNSCDD from the Administration for Community Living, U.S. Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy MarketResponse International Tom Pearson, Managing Director t.pearson@marketresponse.com Susan McCullough, Senior Research Director s.mccullough@marketresponse.com Lynn Schreifels, Research Analyst l.schreifels@marketresponse.com