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Lurie Institute for Disability Policy
@lurieinstitute.bsky.social
270 followers 79 following 400 posts
We lead research at Brandeis University to improve the well-being of people with disabilities & their families. linktr.ee/lurieinstitute
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We at the Lurie Institute are deeply saddened by the passing of Alice Wong, a visionary disability activist, writer, and tireless advocate for disability media and culture.
Alice Wong sits in a power wheelchair against a solid blue background. She is wearing a colorful, long-sleeved top in shades of orange, pink, and cream, along with bright pink pants. She uses a ventilator, with tubing visible across her chest and connected to her chair. Above her, a purple banner reads “Honoring Alice Wong” in bold white text.
November 17, 2025 at 7:38 PM
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November is National Family Caregivers Month, a time to recognize the contributions of family caregivers.

The FSRTC at the University of Illinois Chicago recently launched a new podcast series, dedicated to amplifying the voices of unpaid family caregivers: zurl.co/DylYE
Logo for the Family Support Series, featuring a headset encircling the FSRTC handshake symbol. Text reads: November is National Family Caregivers Month.
November 14, 2025 at 3:26 PM
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Introducing the Accessible Pregnancy Action Plan 🤰🏻 an innovative new tool that supports pregnant people with disabilities. Explore the new resource on our website: TinyURL.com/AccessiblePregnancyActionPlan

#DisabilityPregnancy #PregnancyResearch
Graphic with a purple background announcing the Accessible Pregnancy Action Plan – Facilitator’s Guide. It features a smiling woman with dwarfism using a laptop. A pop up window shows the guide’s cover. Each slide shows link to guide: Tiny U R L dot com forward slash Accessible Pregnancy Action Plan People with disabilities need pregnancy care and support with them in mind. That's why we made the Accessible Pregnancy Action Plan (APAP). Includes image of a mother with a physical disability feeding her baby with a bottle. Pregnant disabled people can use the APAP to talk with a peer or doctor about what matters most to them during pregnancy, labor and delivery, and postpartum. Image of two peers happily talking to each other. Learn more online. Tiny U R L dot com forward slash Accessible Pregnancy Action Plan. Image of a mother and daughter viewing an embedded video of the Facilitator's Guide on their phone.
November 12, 2025 at 9:02 PM
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The deliberations were successful, and their contributions continue to advance inclusive public health research and practice.

#DisabilityPolicy #CommunityLivingPolicy #CommunityLiving #DisabilityEquity #Medicaid #Medicare #DisabilityHealthCare #HCBS #LTSS
Elad Daniels, Data Analyst at the Lurie Institute, presents his research highlighting key themes such as Medicaid rebalancing, the workforce crisis, and how physical restraint can contribute to chemical restraint. Kim The, Senior Research Associate at the Lurie Institute, delivers a presentation on Barriers to Accessing Home and Community-Based Services (HCBS) for People of Color.
November 10, 2025 at 4:45 PM
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We’re pleased to have had so many Lurie researchers and students present at the recently concluded 2025 Annual Conference of the American Public Health Association.
Image on a blue background. Text reads: Lurie Institute Presentations at APHA 2025. Group photo from the conference. From L-R, Anne-Marie Gomes, Teresa Nguyen, Kim The, Ruby Siegel, and Joseph Caldwell posing in front of a presentation on 'Cultural Factors Impacting Home and Community-Based Services'. Carolyn Hoffman, a postdoctoral research fellow at Lurie poses for a photo in front of her poster on, 'The Relationship Between Receiving an Endometriosis Diagnosis, Race and Ethnicity, and Health Insurance Type: Analysis of National Survey of Family Growth Data, 2011-2019. ' Anne Valentine, Co-Investigator and Project Manager for the Pregnancy Center, presents on Maternal Mortality and Severe Maternal Morbidity Risks Among Hispanic Women with Physical Disabilities in the U.S. Fernanda Escobar, Research Associate at the Lurie Institute, shares her presentation on The Role of Doulas in Supporting Perinatal Care for Deaf and Hard of Hearing Women.
November 10, 2025 at 4:45 PM
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Help the National Research Center for Parents with Disabilities identify important topics for the community!

English: TinyURL.com/NRCPD-survey
Español: TinyURL.com/NRCPD-encuesta

#ParentsWithDisabilities #DisabledParents #DisabledParenting #DisabledParent #DisabilityResearch
A mom using a wheelchair sits at a table with her young child typing on a computer. Text reads Are you a disabled parent, or a professional that serves disabled parents? The National Research Center for Parents with Disabilities wants to hear from YOU! We are doing a survey to learn about the needs of disabled parents. Please answer a few questions about how we can best support disabled parents and professionals who serve them. Take survey: TinyURL.com/NRCPD-survey. A scannable QR code to the English survey is visible. n padre latino con una diferencia en las extremidades sonríe a su hija, quien sostiene un teléfono inteligente para que ambos lo miren. El texto: ¿Eres una madre o un padre con discapacidad, o un profesional que trabaja con madres o padres con discapacidad? ¡El Centro Nacional de Investigación para Padres con Discapacidades quiere escuchar TU opinión! Estamos realizando una encuesta para conocer mejor las necesidades de las madres y los padres con discapacidad. Por favor, responde unas breves preguntas sobre cómo podemos apoyar de la mejor manera a las madres y los padres con discapacidad y a los profesionales que los atienden. Participa en la encuesta: TinyURL.com/NRCPD-encuesta. Se muestra un código QR escaneable que dirige a la encuesta en español.
November 5, 2025 at 8:43 PM
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Apologies that the alt text was not included in the previous post.
Centered over a dark green background, the capitalized top header text reads “Disabled Women’s Equal Pay Day 2025 October 23” in white and pale green letters. Below is a single dollar bill torn in half, representing how disabled women are paid just over half of what nondisabled men are paid per year.
November 5, 2025 at 4:33 PM
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Dr. Megan Madison, a recent graduate of the PhD program at the Heller School co-authored a series of children’s books designed to support early conversations about consent and disability justice. You can learn more about the series here: zurl.co/0TUbo
Cover of the children’s book “All of Us: A First Conversation About Disability” by Dr. Madison. It shows diverse adults and children, some using wheelchairs, crutches, or a service dog, smiling together against a light green background.
November 4, 2025 at 6:55 PM
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The Carrie Buck Lecture recording is available now!

Laura Millar discusses how consent is not just a yes-or-no moment, but a core component of Disability and Reproductive Justice.

Watch here: zurl.co/K8u7e
Image announcing the availability of the Carrie Buck Lecture Recording. The image shows a laptop displaying Rebecca Cokley sitting across Laura Millar sharing a laugh, with the ASL interpreter and the Carrie Buck banner in the background. Text above reads "Keynote Recording Available Now" on a blue background.
November 3, 2025 at 6:54 PM
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The Lurie Institute for Disability Policy conducted a study examining barriers impacting access to Medicaid Home and Community-Based Services faced by disabled people of color: zurl.co/AYxS8
Evidence-based policy Recommendation. Invest in affordable and accessible housing. It keeps people out of institutions and in the community. Background image of a housing unit.
October 31, 2025 at 1:31 PM
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A few great moments from Tuesday’s keynote conversation between Laura Millar and Rebecca Cokley 💬

Keynote recording coming soon!
“The culture of consent does not just stop and start and stop with codes of conduct.” - Laura “There’s a real custodial, ‘we’re going to teach you to be independent. But you’re going do it our way.’” - Laura “Let’s stop parenting for what we don’t want our children to have, and start parenting for what we do want them to have.” - Laura “The messages and the seeds they plant today will turn into the relationships of tomorrow.” -Laura
October 30, 2025 at 7:07 PM
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Thank you to all who attended our 3rd Annual Carrie Buck Distinguished Fellowship Keynote! It was such an engaging and thought-provoking conversation. We extend our deepest gratitude to our 2025 Fellow, Laura Millar, for sharing her expertise and insights with us.

Recording coming soon!
Monika Mitra, Laura Millar, and Rebecca Cokley pose for a group photo. Laura Millar holds her plaque and a book by Alex Green titled A Perfect Turmoil. Laura Millar sits across from Rebecca Cokley as Rebecca shares a point with the audience. A Carrie Buck Distinguished Fellowship banner is visible in the background. Group photo of Lurie staff, Advisory Board members, and Student Fellows together with Carrie Buck Fellow Laura Millar and 2024 Fellow Robin Wilson-Beattie at the event venue. Laura Millar, a brown-haired white woman wearing a black top and blue patterned skirt, smiles in response to a remark.
October 30, 2025 at 5:09 PM
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The Lurie Institute for Disability Policy interviewed disabled people of color about the barriers they faced to getting Medicaid services: zurl.co/1Yfzc
Almost half (46%) of participants reported that nursing home social workers were unhelpful and/or rebuffed consumers' requests to support them in their transition process. Includes a chart showing 46% and an image of a worker sitting at a desk, surrounded by files.
October 29, 2025 at 1:31 PM
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The Lurie Institute for Disability Policy interviewed disabled people of color about the barriers they faced to getting Medicaid services: zurl.co/7r6eX
Sophia’s Story. The social worker came in and she sat in the chair in my room. She didn't introduce herself or anything. She just sat down and said, ‘You know you can’t stay here, right?’ And I said, ‘Oh, okay. I didn’t know that.’ And then she said, ‘You need to work on where you’re going to go because you can’t be here.’ And then she just walked out. Read more stories like Sophia’s.
October 24, 2025 at 1:30 PM
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Share your story 💬

November is National Family Caregivers Month! Our friends at the Family Support Research and Training Center (FSRTC) will be celebrating family caregivers by sharing their experiences.

#FamilyCaregiver #NationalFamilyCaregiversMonth
Woman combing through an elder woman's hair. Text reads: Share your family caregiving story! How to participate: Be a family caregiver (caring for elderly parents, a partner with chronic illness, people with disabilities, etc.) Take 1-2 minute selfie-style video recording of yourself. You can also send photos with your video. Submit by November 24st. Send your video to FSRTC@UIC.edu FSRTC will edit the video for you. All you need to do is record and send! What should your story include? A continuous selfie-style video of you speaking OR A selfie video plus any supplementary photos or additional video footage that we can edit together to create a dynamic post. Think about answering one of these questions: What do you enjoy about being a family caregiver? What do you do for respite? What do you want others to know about being a family caregiver? What barriers do you experience as a family caregiver?
October 23, 2025 at 7:29 PM
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Disabled women are paid only 68 cents to every dollar nondisabled men make. Equal pay isn’t just about numbers; it’s about justice, access, and survival.

Learn more: zurl.co/Wkxdj

#DisabledWomensEqualPayDay #DisabledWomensEPD
October 23, 2025 at 6:08 PM
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The Lurie Institute for Disability Policy studied the obstacles disabled people of color encountered getting Home and Community-Based Services. The study found that participants and their interpersonal relationships were constrained by difficult economic circumstances: zurl.co/31kDU
Maintaining benefit eligibility meant that participants could not save for renting or buying a home, monthly bills, durable medical equipment, home modifications, and other supports needed to transition back to the community. This left participants to rely on family or friends to get out of institutional settings; however, interpersonal ties faced similar financial and economic hardships and were unable to provide support for community living. Image of a man worrying about finances.
October 22, 2025 at 2:30 PM
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Shared decision-making, competitive compensation, and meaningful mentorship are key elements of our peer research training model.

Learn more about our article article: zurl.co/ZawMd

#DisabilityResearch #PeerResearch #NDEAM #NDEAM2025
October 21, 2025 at 1:00 PM
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The Lurie Institute for Disability Policy conducted a study examining barriers impacting access to Medicaid Home and Community-Based Services faced by disabled people of color.
Evidence-based policy recommendation. Invest in affordable and accessible housing. It keeps people out of institutions and in the community. Image of a house, beside a group of people protesting.
October 19, 2025 at 12:04 AM
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"Employing disabled people in the research field can prevent harm and ensure that research is responsive to the needs of the communities most impacted by the research.” - Laurin Bixby, Research Scientist

#NDEAM #NDEAM2025 #DisabilityResearch
Image description: A green text bubble reads: NDEAM 2025. Research about disability must include disabled people. Their lived expertise ensures studies center the needs of disabled people, challenge ableist assumptions, and advance justice rather than perpetuate harm. Representation in the field is essential for shaping policies, practices, and knowledge that truly reflect and serve disabled communities. The quote is attributed to Laurin Bixby, who is seen smiling, framed by a blue shadow.
October 17, 2025 at 10:47 PM
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Just 10 Days Away!

Join us on October 28 at the Zinner Forum for an engaging discussion with Laura Millar and Rebecca Cokley: brandeis.zoom.us/webinar/regi...
Flyer for the Carrie Buck Distinguished Fellowship event, Permission, Pleasure, and Power: Consent as the Foundation for Disability and Reproductive Justice. Features Laura Millar and Rebecca Cokley, on October 28, 2025, at 5 30 PM in the Zinner Forum and via Zoom. Light teal background with bold black and gray text, photos of both speakers, white curved lines, and logos for Brandeis, Heller, and the Lurie Institute.
October 17, 2025 at 2:06 PM
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October 2025 marks the 80th year of recognizing National Disability Employment Awareness Month (NDEAM).

Stay tuned for more reflections from our staff about the importance of employing disabled researchers in disability research.

#NDEAM #NDEAM2025
A green text bubble reads: NDEAM 2025. True inclusion values lived experience, challenges ableism, and empowers disabled researchers to lead and shape knowledge that affects their communities. The quote is attributed to Monika Mitra, who is seen smiling, framed by a blue shadow.
October 14, 2025 at 4:57 PM
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World Mental Health Day is dedicated to promoting mental health education and advocacy, while working to combat the stigma surrounding mental health.

Judith Brown and Jennifer Senda shared their experiences navigating the daily anxieties of parenting with a disability: zurl.co/g70gh
I love the medical field, but then sometimes I have a love-hate relationship. They ask you all these wonderful questions. How are you feeling? Do you feel sad? And then they file it and they really don't follow up on it. I literally had to be very vocal. I need help. I'm not doing well. But they really didn't pay attention till like toward the end.
October 11, 2025 at 11:18 PM
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Disabled people of color can face barriers to getting good Home and Community-Based Services. In our recent study, we found that race played a significant role in shaping participants’ interactions and the treatment they received from workers: zurl.co/I0Cbu
Mason’s Story. I am very convinced that when I went to [Transportation service] it was absolutely clear to me that she looked at me, and she saw just another Black person, too lazy to get up and walk. He's rolling around in this expensive chair that he should not have…It was just like I said, you get finely tuned to it. It is just so clear that your color is influencing how they feel.
October 9, 2025 at 7:02 PM
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People with disabilities can face barriers and stigma when adopting kids. In this webinar, facilitated by Kara Ayers, we will hear from two disabled parents, Robin Wilson-Beattie and Yomi Young, about their experiences with adoption. Register here: zurl.co/Pu2qu
Webinar flyer on a green background titled Disabled Parents' Adoption Experiences featuring speakers Robin Wilson Beattie and Yomi Young and facilitated by Kara Ayers. The event will be held on Monday November 10 2025 at 1 PM ET via Zoom. The flyer includes the Lurie Institute and Center for Parents with Disabilities logos speaker photos and icons indicating sign language interpretation and closed captioning.
October 9, 2025 at 2:39 PM