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Lurie Institute for Disability Policy

@lurieinstitute.bsky.social

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We lead research at Brandeis University to improve the well-being of people with disabilities & their families. linktr.ee/lurieinstitute

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · Dec 12

The Lurie Institute for Disability Policy at Brandeis University is home to four federally funded research centers that are working to improve the lives of people with disabilities.

Learn more about our work: linktr.ee/lurieinstitute

The combined logos of the Lurie Institute for Disability Policy, the National Research Center for Parents with Disabilities, the Community Living Policy Center, the National Center for Disability & Pregnancy Research, and the Community Living Equity Center

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 1d

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.

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Reposted by Lurie Institute for Disability Policy

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · Aug 10

As we celebrate the International Day of the World’s Indigenous Peoples, discover some important data we know about Long-Term Services and Support for Native American Adults.

LTSS Support for American Indian/Alaska Native Adults. Cover image of two women, one on each side, wearing patterned traditional-style clothing. A younger man in a yellow shirt sits in the middle with his arms around both women.

9.4% of American Indian/Alaska Native adults, approximately 129,680, need Long-Term Services and Supports. Out of the 129,680 Native people who need LTSS, 50,300 are over 65. Illustration in the middle of an older couple with canes.

Although there are many American Indian/Alaska Native adults who need LTSS Support, a large number of them don’t receive it, revealing a large disparity between LTSS Need and LTSS Support. Table showing what type of LTSS services and support people need or receive as well as the number of Native people in the United States associated with that data point. Adults who need Medicaid LTSS 129,680. Adults who receive Medicaid LTSS 70,145. Adults who receive only Medicaid HCBS 58,438. Adults Who Receive Only Medicaid Institutional LTSS 9,203. Adults Who Receive Both Medicaid HCBS & Institutional LTSS 2,504.

Advocates can use this disability data to push for robust and culturally competent services and supports. For example, in Louisiana, about 1,490 American Indian/Alaska Native adults need Long-Term Services and Supports, but only about 9% of those individuals actually get the services and supports that they need. This is a large unmet need! Image of an aged woman being supported by a nurse, together with a map highlight of Louisiana.

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Reposted by Lurie Institute for Disability Policy

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · Aug 10

As we celebrate the International Day of the World’s Indigenous Peoples, discover some important data we know about Native American Parents with Disabilities.

Data We Know about American Indian/Alaska Native Parents with Disabilities. Cover image of a parent reading with his son.

In California alone, there are about 2,800 American Indian/Alaska Native parents with disabilities. US Map with California highlighted.

These American Indian/Alaska Native parents reflect a diverse range of disabilities. Displays a chart with the following data: Multiple 1700 Cognitive 1300 Hearing 700 Independent Living 1300 Mobility 1400 Self-Care 700 and Vision 600.

A large number of them have multiple disabilities. This means that many of them report having more than one disability, such as the combination of a visual disability and a cognitive disability. Illustration of people with diverse disabilities grouped together.

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 3d

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.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 5d

Thanks so much for sharing!

Reposted by Lurie Institute for Disability Policy

ASA Section on Disability in Society @asadisability.bsky.social · 5d

Interested in learning about disabled people's experiences of navigating the adoption process and the barriers they face? Check out this virtual webinar hosted by @lurieinstitute.bsky.social. If you are interested in attending, please sign up at this link!

Day/Time: November 10 at 1 pm EST

Welcome! You are invited to join a webinar: Disabled Parents' Adoption Experiences. After registering, you will receive a confirmation email about joining the webinar.

People with disabilities can face barriers and stigma when adopting kids. In this webinar, facilitated by researcher and adoptive parent Kara Ayers, we will hear from two disabled parents, Robin Wilso...

brandeis.zoom.us

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 5d

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.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 6d

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.

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 7d

Lurie Institute researchers Miriam Heyman and Anne Valentine presented at the National Research Consortium on Mental Health in IDD conference! They shared about our project 'Enhancing Maternal Care for Women with IDD: A Toolkit for Doulas & Healthcare Providers.'🤰🏻

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Reposted by Lurie Institute for Disability Policy

ECS @heartoverheight.bsky.social · 11d

This was such an awesome project to be a part of, Thank-You @lurieinstitute.bsky.social for having me!

#DisabilityPregnancy #DisabledPregnancy #PregnancyResearch #Lactation #IBCLC

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · Aug 28

The "Lactation and Breastfeeding with a Disability" webinar recording is now available!

Watch the recording: zurl.co/5OXyv
FAQ & Resource Guide coming soon!

#DisabilityPregnancy #DisabledPregnancy #PregnancyResearch #Lactation #IBCLC

Webinar Recording Available Now. On the laptop screen, text reads: “The crib was wildly inaccessible for both of us. It is a special kind of helplessness when you can't reach your own baby" attributed to Elizabeth Soper.

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 9d

The study “Peer Support for Deaf Parents” explores the communication barriers deaf adults encounter in healthcare and highlights how virtual support groups for Deaf parents can help address these challenges.

Learn more: zurl.co/MMmzz

QR code to scan to read the full report to learn more, with the cover image from the report.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 9d

The International Deaf Awareness Week for 2025 ran from September 22 to 28, in celebration of Deaf culture and the promotion of equality and dignity for Deaf individuals worldwide.

Research Brief. Peer Support for Deaf Parents. Cover image of a computer network of individuals talking to each other in ASL.

Introduction. There are 1 million Deaf adults in the United States. Deaf adults usually use American Sign Language and are a part of the Deaf community. When Deaf adults get healthcare, they often face communication challenges. Many healthcare providers don’t use American Sign Language. Because of this, Deaf adults often get worse care. Deaf adults have less basic health information, including health information about their children. When we exclude Deaf parents, they miss out on important parenting information.

Peer groups help Deaf parents find the support they need. The group meetings focused on education, social support, and building parent confidence. Parents learned about parenting skills, childcare, and children’s healthcare. The support group used the ParentingWell approach. The ParentingWell approach uses family-focused conversations in healthcare settings. Illustration of chat boxes with questions like 'Where are your children living?' and 'How does your family communicate?'

What did we learn? After joining the support group, parents said: “It was a good mix of younger and older kids, so I was able to relate to the experiences other parents had.” “I had imagined a more stable group so my expectations were not met there but I also liked being able to talk to different moms about different topics so it is more about what the expectations are.” “I was interested, learning more about the next stage and what to expect then.”

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 10d

The study “Pregnancy Experiences of Deaf People” discusses the difficulties Deaf patients face in getting good healthcare, especially because of their need for different ways to communicate with doctors.

Learn more: zurl.co/luKRb

#DisabilityCommunity #DisabilityAccess #DisabilityResearch

zurl.co

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 10d

The International Deaf Awareness Week for 2025 run from September 22 to 28, in celebration of Deaf culture and the promotion of equality and dignity for Deaf individuals worldwide.

Research Brief. Pregnancy Experiences of Deaf People. Cover Image of a deaf patient signing to a doctor that doesn't seem to understand the issue.

What did we learn? We learned that Doctors could improve pregnancy experiences for Deaf People if they offer an in-person ASL interpreter to Deaf people who want one. Communicate well with their patients. Provide more healthcare information in ASL. What's Needed? Our current laws to help Deaf people need to be made stronger. Doctors and other healthcare workers should be trained in working with Deaf people.

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 11d

particularly elevated risk for various chronic medical conditions, pregnancy complications, and adverse birth outcomes such as low birth weight.

Read here: zurl.co/PM8ON

zurl.co

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 11d

In part 2 of the 2-Part Series on Deaf and Hard-of-Hearing (DHH) Mothers, researchers at the Lurie Institute shed light on notable disparities faced by DHH women,

zurl.co

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 11d

The International Deaf Awareness Week for 2025 run from September 22 to 28, in celebration of Deaf culture and the promotion of equality and dignity for Deaf individuals worldwide.

Research Report. Deaf and Hard-of-Hearing Mothers’ Experiences with Pregnancy Care: Explaining Disparities. Illustration showing 475+ survey participants and 67 interviews with DHH mothers, together with two women signing to each other.

Background. This work is part of an overarching “mixed-methods” study, meaning that it uses a variety of different qualitative and quantitative methods. The study’s mixed-methods design allows researchers to learn directly from DHH women and clinicians, rather than relying solely on facts and figures. This mixed-methods approach will ultimately provide a more complete understanding to answer questions about why we may be observing disparities. After we combine and analyze our data, we will be able to develop recommendations for both DHH women who may be considering pregnancy and for clinicians. These recommendations should improve DHH women’s pregnancy experiences—and ultimately outcomes.

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 12d

In a recent blog published by the American Association of People with Disabilities (AAPD), Marcy Waring reflects on her autistic identity and emphasizes the importance of acceptance and support, shifting the focus away from narratives of cure, prevention, or reversal: zurl.co/Uq3Nb

A Quote by Marcy: "But I do not want a cure. I do not think my mom should have prevented me. And I certainly do not want a crucial part of my identity to be reversed". Includes an image of Marcy in a beige suit jacket.

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 12d

In part 1 of the 2-Part Series on Deaf and Hard-of-Hearing Mothers, researchers at the Lurie Institute shed light on pregnancy outcomes and the disparities experienced by deaf and hard-of-hearing mothers.

Read here: zurl.co/SF2BQ

#DisabilityCommunity #DisabilityAccess #DisabilityResearch

zurl.co

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 12d

The 2025 International Deaf Awareness Week, observed from September 22 to 28, celebrates Deaf culture while promoting equality and dignity for Deaf individuals worldwide.

Quotes from the researchers. "We need to think about how we can design a healthcare system that is patient-centered and truly accessible", by Michael McKee. "[Informed consent] is a crucial component that must be discussed during the pregnancy stage before the baby arrives", by Adrianna Smart. "We should be flagging these individuals as higher-risk women, similar to what we do for other health conditions or older women", by Michael McKee.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 12d

Lurie Institute researchers have been awarded a new grant to advance Deaf and Hard of Hearing maternal outcomes.

This study will identify the leading SMMM indicators for DHH and Black DHH people, and the findings will be used to develop a patient informed toolkit.

Learn more: zurl.co/aG5nt

Addressing Severe Maternal Morbidity of Deaf and Hard-of-Hearing Individuals. Image of a pregnant woman in a purple hoodie holding her bump.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 13d

Early this morning, the U.S. government shut down following a congressional spending deadlock. Learn what this means for disabled people and their families in The Arc’s latest update: zurl.co/5GJto

Federal Government Shutdown: What People with Disabilities Should Know

Washington, DC update: What today’s federal shutdown means for Social Security, Medicaid, Medicare, SNAP/WIC, ACA Marketplace, HHS operations, and civil rights.

zurl.co

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 14d

Explore updates on our new Student Fellows, recent publications & presentations, and the upcoming Carrie Buck Fellowship event: zurl.co/N2GyD

Want to get newsletters from the Lurie Institute or our various research Centers in the future? Sign up today: zurl.co/yz03r

Preview of email from the Lurie Institute for Disability Policy on a Purple Background. Text reads: "September News from the Lurie Institute." First story features the announcement of a new grant to study deaf and hard of hearing maternal outcomes.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 19d

To develop the next generation of disability-policy scholars, the Lurie Institute for Disability Policy established the Student Fellowship in Disability Policy.

Meet our 2025/26 fellows: zurl.co/yMnm9

#DisabilityCommunity #Accessibility #DisabilityAccess #DisabilityResearch

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 21d

Join us in welcoming Carolyn Faith Hoffman as a postdoctoral research fellow at the Lurie Institute for Disability Policy!

Learn more about Carolyn on our website: zurl.co/A4237

#DisabilityResearch #DisabilityPolicy