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Lurie Institute for Disability Policy

@lurieinstitute.bsky.social

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 · 5m ago

Our webinar is happening tomorrow at 2 PM ET! Register today: tinyurl.com/Nursing-Home-to-Community

Welcome! You are invited to join a webinar: Navigating Nursing Home to Community Transition: Barriers and Supports for Disabled People of Color. After registering, you will receive a confirmation emai...

The 1999 Supreme Court Olmstead v. L.C. decision clarified that the Americans with Disabilities Act (ADA) protects disabled people from unjustified segregation in institutional settings. The decision ...

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Lurie Institute for Disability Policy@lurieinstitute.bsky.social · last mo.

Upcoming Webinar 💻 Navigating Nursing Home to Community Transition: Barriers and Supports for Disabled People of Color 🗓️ Thursday, August 6, 2026 ⏰ 2 PM ET 📍 Zoom - Register today: zurl.co/cK2Cy ♿️ ASL interpretation and Zoom automated captions will be available.

Informational webinar graphic featuring webinar info provided in the caption. Photos of presenters, peer researchers at the Lurie Insitute for Disability Policy, Anne-Marie Gomez and Tyree Brown, are visible. The date and time, a Zoom icon indicating the event will be held on Zoom, and ASL and closed captioning (CC) icons indicating accessibility accommodations are available.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · yesterday

"This center has made me so heard and seen." - Morénike Giwa Onaiwu, Advisory Board member for the National Research Center for Parents with Disabilities

A screenshot of an article published in the Waltham Times by Charlie Johnson. Text reads: “Brandeis research center for disabled parents confronts closure after federal funding opportunity removed.” Exterior of Brandeis's Heller Building where the research center is located.

A comment from Morénike Giwa-Onaiwu, and Advisory board member, mother of six, who is autistic and has rheumatoid arthritis and other disabilities: “You’ve dangled a carrot in front of [disabled parents], and now if they can no longer access the support that they need, the answers that they need. It would have been better to just leave us at the vortex that we had before.”

A comment from Nicole Lomerson, a research associate at the Center and a physically disabled parent: “I’m a disabled parent who knows what it’s like to have my ability to parent my child called into question by people with more power and authority than I have, and that was incredibly terrifying, and that made my career take a hard left turn towards this issue.” A comment from Miriam Heyman, the Center’s project manager. Regarding a parent’s barriers to getting their child to school, quote: "If it was the child's disability, then they would have had to provide a bus. But because it was a parental disability, there was no mandate for that school to provide a bus, so they didn't."

Comment from Monika Mitra, the Lurie Institute’s director and a professor of disability policy: This is the only center which focuses on the needs, the experiences of disabled parents. Then, the text reads: “Without new funding, the nation’s only research center on parents with disabilities will disappear by August 31, 2026.”

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 2d ago

In the Waltham Times 📰 Read the latest article covering the National Research Center for Parents with Disabilities' impending closure, written by Charlie Johnson, featuring remarks from Advisory Board member Morénike Giwa Onaiwu and Center staff. zurl.co/fpSli

Brandeis research center for disabled parents confronts closure after federal funding opportunity removed – Waltham Times

The National Research Center for Parents with Disabilities is at the Heller School at Brandeis University, shown above. Photo by Charlie Johnson. The

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 2d ago

📰 From GBH News' Meghan Smith: Staff at Brandeis research center for disabled parents say federal funding cut may force closure Read the article, with insights from our staff and Advisory Board member Keith Jones: zurl.co/pf1oI

Staff at Brandeis research center for disabled parents say federal funding cut may force closure

Staff at the National Research Center for Parents with Disabilities say they could lose their federal funding at the end of August.

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 2d ago

Peer support is a critical infrastructure that helps disabled people of color build community. Our latest case study explores how peer support organizations reduce barriers to home and community-based services (HCBS) and create pathways that sustain community living. Read more: zurl.co/CijX1

Cover slide with a photo of two people talking in a community setting. A blue text box reads, "Case Study: Peer Support Strengthens Pathways that Sustain Community Living for Disabled People of Color." Logos for Brandeis University, The Heller School, Lurie Institute for Disability Policy, and DREDF appear at the top.

Blue background titled "Background." Text explains that disabled people of color face significant barriers to accessing Home and Community-Based Services (HCBS). Purple icons labeled "Workforce shortages," "Waitlists," "Structural racism," "Ableism," and "Complex systems" surround a disability symbol. Text at the bottom states that these barriers limit opportunities for community living and increase the risk of institutionalization.

Blue background titled "Purpose & Methods." Text explains that the case study explored how peer support strengthens the capacity of disabled adults of color to live in their communities, access essential HCBS, exercise self-determination, and reduce the likelihood of institutionalization. Three icons list the research methods: literature review, semi-structured interviews, and thematic qualitative analysis.

Closing slide with the heading, "Read the resource on our website to learn more." A QR code labeled "SCAN ME" appears next to an image of the case study cover.

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

Research shows that 63 million Americans provide unpaid care to aging family members and people with disabilities. Despite their critical role, family caregivers are often an "invisible" population because they are not consistently identified in national surveys. Read more: zurl.co/UnskW

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

Read our July newsletter to learn about: 🚨 The Parenting Center funding crisis 📋 Our latest briefs and reports 📊 Our latest articles & publications 💻 Webinars & events 📝 Blogs & Disability Pride reflections Read online: conta.cc/4x8d35r Sign up for our emails: linktr.ee/LurieInstitute

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

💬 “This is not the cancellation of one proposed study. It threatens a functioning national infrastructure built over ten years.” — Robyn Powell Forbes’ Keely Cat-Wells on the National Research Center for Parents with Disabilities’ closure: zurl.co/wbzBy 📢 Join us in taking action: zurl.co/tKRPg

A screenshot of an article published in Forbes by Keely Cat-Wells. Text reads: “America's Only Research Center For Disabled Parents Faces Closure.” A disabled mom of color smiles as she holds her toddler up in the air. The mom uses a full leg prosthetic.

A comment from Robyn Powell, a disability legal scholar, a team member at the Center and lead author of the landmark 2012 Rocking the Cradle report: “The ultimate loss will not be measured only in unfinished research or outdated webpages. It will be measured in policies made without evidence, professionals working without guidance, parents unable to find help, and children unnecessarily separated from their parents because systems continue to misunderstand disability."

Comment from Robyn Powell: I am afraid the absence of research will be mistaken for the absence of harm. When no one is collecting data, monitoring laws, evaluating interventions, and documenting disabled parents' experiences, discrimination becomes easier to overlook and harder to challenge." Then, the text reads: “Without new funding, the nation’s only research center on parents with disabilities will disappear by August 31, 2026.”

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

Upcoming Webinar 💻 Disabled Parents Building Mutual Aid Networks 🗓️ Thursday, August 27, 2026 ⏰ 1 PM ET 📍 Zoom – Register today: zurl.co/HxWLA Join the conversation by and for disabled parents about building support through mutual aid.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · last wk.

The 36th anniversary of the #ADA reminds us that community living is for everyone and that disability inclusion benefits all of us! Our research and policy briefs directly support community living access and inclusion. Check out some of our work here ⬇️ 🧵

Parents follow their toddler in an outdoor setting. The dad uses a wheelchair. Text reads "Community living is for everyone."

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · last wk.

Today we celebrate the 36th anniversary of the Americans with Disabilities Act (ADA) and the disability community’s immense efforts to get the law passed! The Lurie Institute and its associated research centers wish you a happy ADA Day and a great rest of Disability Pride Month.

Staff and students at the Boston Center for Independent Living's ADA Celebration. They smile while posing next to a sign that reads "A D A day."

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 2w ago

Happy Disability Pride Month! 🎉 Watch our webinar, Disability Identity and Pride in Research, featuring a discussion on why disability identity and pride matter in research and how disabled researchers and community members are shaping more inclusive work. 🎥 Watch here: zurl.co/QUkg1

Disability Identity and Pride in Research [CC] [ASL]

The Community Living Center's webinar, Disability Identity and Pride in Research, centered the voices of members of the CLEC Community Advisory Committee. Th...

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 2w ago

🗞️ Read how the impending closure of the National Research Center for Parents with Disabilities directly impacts our communities through this piece in The Imprint by Michael Fitzgerald: zurl.co/c8w1B 📢 Join us in taking action: TinyUrl.com/ParentingCenterFunding

A comment from Alison Barkoff, the Biden administration’s assistant secretary for aging and George Washington University health law and policy professor. “I think this is sending a message that this isn’t a critical issue, that maybe parents – people with disabilities – don’t need this kind of support and advocacy and research... But people with disabilities face so much discrimination as parents. It is a huge gap that no other entity or funding source can fill.”

A comment from Cathy Haarstad, board president of the Maryland-based Association for Successful Parenting: “The cost of a foster care placement currently averages $58,000 per child per year... government investment in research that benefits parents with disabilities, whose children often end up in foster care due to systemic bias, would be a good investment of taxpayer dollars.” Then, a comment from Kimberly Tissot, a cancer survivor, amputee and disability rights activist who leads the nonprofit Able South Carolina: ““[Cancelling the grant] will destroy families. This was a significantly bad move... parents with disabilities are overrepresented in the child welfare system and nobody else talks about it.”

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 2w ago

“It is a huge gap that no other entity or funding source can fill.” - Alison Barkoff, previous administration's Assistant Secretary for Aging Read coverage about the National Research Center for Parents with Disabilities' funding crisis in @theimprintnews.bsky.social zurl.co/1P7b5

Research Center for Parents With Disabilities Faces Closure

The only U.S. research center focusing on parents with disabilities faces closure after the Trump Administration withdrew a federal grant.

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ASA Section on Disability in Society @asadisability.bsky.social · 2w ago

www.motherjones.com/politics/202... Supporting research that improves the lives of persons w/disabilities is critical more than ever. @lurieinstitute.bsky.social has been a hallmark in advancing policies and research that supports the disability community. #disabilityrights

The only research center for disabled parents is losing federal funding

Staff call it a "profound setback for disability rights and family equity."

motherjones.com

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 2w ago

Our latest policy brief explores barriers to Home- and Community-Based Services (HCBS) for American Indian and Alaska Native elders and offers recommendations to improve equitable access to care. Explore more: zurl.co/iJO5l #HCBS #Medicaid

Text reads: Policy Brief. Home- and Community-Based Services for American Indians and Alaskan Natives. Recommendations for Increasing Access and Recognizing Resiliency. Image of a Navajo elder woman wearing glasses and turquoise earrings, and is wrapped in a colorful patterned blanket while seated outdoors in a desert landscape.

Text reads: "Summary. This brief examines barriers for American Indian/Alaska Natives (A I / A N) elders and relatives with disabilities in accessing Medicaid Home- and Community-Based Services (HCBS) and identifies policy recommendations to improve access to support better health and independence and reduce the need for more costly care. Policy Recommendations. One. Increase federal funding for HCBS and other programs. Two. Strengthen partnerships between states and Tribal Nations. Three. Support culturally-grounded care"

Text says "Read the full brief and plain language version online." Cover images for the briefs and its Plain Language Version.

Mother Jones @motherjones.com · 3w ago

The only research center for disabled parents is losing federal funding. Staff call it a “profound setback for disability rights and family equity.”

The only research center for disabled parents is losing federal funding

Staff call it a "profound setback for disability rights and family equity."

motherjones.com

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

Happy Disability Pride Month! ♿ Watch our webinar, Black Deaf Disabled and Proud Parenting, to hear reflections on parenting, disability identity, and building community from Black Deaf disabled parents. 🎥 Watch here: zurl.co/C884d

Black, Disabled, Deaf and Proud [CC] [ASL]

Our panelists comprised Heather Watkins, Earl Allen, and Morénike Giwa-Onaiwu. Heather is a mother who has muscular dystrophy. She has one daughter. Earl is ...

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

Our research center for #ParentsWithDisabilities faces closure after federal funding opportunity withdrawn Learn more: TinyUrl.com/ParentingCenterFunding Press release: tinyurl.com/PressReleaseFunding Toolkit: tinyurl.com/AdvocacyToolkitFolder

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

July is Disability Pride Month! 💜 Our next reflection comes from Jessie Owen, a digital creator, disability access consultant, and Advisory Board member of the National Center for Disability & Pregnancy Research. ✨ Read Jessie's full reflection: zurl.co/YUxLK

A graphic with a light purple striped background and a Disability Pride flag in the top right corner. A white framed panel features the quote: "I think disability pride is just having the opportunity to tell the truth about how hard this life can be, while also refusing the narrative that hard means less. I can be frustrated with my body and still have immense respect for it carrying me through impossible things." The phrase "refusing the narrative that hard means less" is highlighted in purple. A photo of Jessie Owen sitting in her wheelchair appears in the bottom left corner. Text identifies her as an Advisory Board member of the National Center for Disability & Pregnancy Research.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 4w ago

July is Disability Pride Month! 💜 Our next reflection comes from Sofiya Cheyenne, an Indigenous multidisciplinary artivist, Teaching Artist, and Creative Access Consultant. ✨ Read Sofiya's full reflection: zurl.co/FQXwo

A graphic with a dark purple background and Disability Pride flag stripes in the top right corner. A light purple textured circle contains the quote: "Disability Pride means celebrating the diversity of our humanity. When we celebrate disability, we are acknowledging and embracing that disability and accessibility affects ALL people." The words "ALL people" are highlighted in purple. A portrait of Sofiya Cheyenne appears in the bottom right corner. Text in the bottom left identifies her as an Advisory Board member of the National Center for Disability & Pregnancy Research.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 4w ago

In this blog, Sherria D. Young-Smith reflects on her experiences as a blind woman, scholar, entrepreneur, homeowner, wife, mother, and grandmother. She challenges the assumptions society places on disabled people and highlights why community living is essential. Read the full blog: zurl.co/8nJ8L

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · 4w ago

Our first #DisabilityPrideMonth reflection is from Advisory Board member Jennifer Senda, who credits her disability for helping her advocate with diverse groups in unison. Read Jennifer’s full comments on our website: zurl.co/DnK2Q

A graphic with a dark purple background and disability pride flags in the corners. Jennifer Senda’s picture is in the bottom corner. The quote on a light purple sticky note says “My disability has given me a unique perspective when it comes to life. Each person's life experience is individual. That does not mean that we can't raise our voices in unison to advocate and to speak up for others; it gives us the empathy to do so.” Jennifer is an Advisory Board Member at the National Research Center for Parents with Disabilities and the National Center for Disability and Pregnancy Research.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · last mo.

Plain language summary: The 1999 Supreme Court Olmstead v. L.C. decision said that people with disabilities have the right to live in the community. Many people have been able to live in the community because of the Olmstead v. L.C. decision. However, other people remain in institutions (including people who would prefer to live in the community).

In a study at the Lurie Institute for Disability Policy, we interviewed disabled people of color who had experience living in a nursing home. In this webinar, peer researchers Tyree Brown and Anne-Marie Gomes, share findings on the barriers and supports that disabled people of color experience to transition from nursing homes to the community. Addressing these barriers and supports can help more people live in the community.

The 1999 Supreme Court Olmstead decision clarified that the Americans with Disabilities Act protects disabled people from unjustified segregation in institutional settings. The decision underscored community living as a civil right & not merely a preference. Despite a shift from institutions to community living, people of color with disabilities are less likely to use Home & Community-Based Services (HCBS), & when they do receive HCBS, they experience higher rates of unmet need, as compared to White disabled individuals.
Through a multi-year study, the Lurie Institute for Disability Policy interviewed disabled people of color with experience living in nursing homes. In this webinar, peer researchers Tyree Brown & Anne-Marie Gomes, share findings on the barriers & supports that affect transitions from nursing homes to community living, including HCBS, for disabled people of color. Addressing these barriers & strengthening identified supports can help us advance the promises of Olmstead.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · last mo.

Sofiya Cheyenne, National Center for Disability and Pregnancy Research Advisory Board member, executive produced the film 'The Tallest Dwarf,' which explores disability history, community, and identity. Watch it on PBS, free until July 7! #DisabilityPrideMonth www.youtube.com/watch?v=CsoD...

How I Found My Place in the Little People Community | Full Documentary

The Tallest Dwarf is a deeply personal and visually inventive documentary that follows filmmaker Julie Forrest Wyman on a profound journey of self-discovery....

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · last mo.

This webinar explores the importance of Housing First for unhoused people with disabilities and its role in advancing community living. Watch the recording on our YouTube channel: youtu.be/1uwbCyd_Yio #HousingFirst #DisabilityPolicy #HousingPolicy @bazeloncenter.bsky.social

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · last mo.

NUEVA investigación de un vistazo 🔍 Nuestro informe más reciente encontró que las madres y los padres con discapacidad tienen entre 1.73 y 2.32 veces más probabilidades de no tener acceso a internet que las madres y los padres sin discapacidad. Conozca más en La brecha digital: zurl.co/zizHv

Gráfico de barras que muestra la probabilidad de no tener conexión a Internet según el tipo de discapacidad. Las personas con discapacidades tenían 1,79 veces más probabilidades de no tener acceso a Internet. Discapacidad de autocuidado, 2,32 veces. Discapacidad visual, 2,15 veces. Discapacidad auditiva, 1,86 veces. Discapacidad que impide la vida independiente, 1,98 veces. Discapacidad motora, 2,24 veces. Discapacidad cognitiva, 1,73 veces.

Gráfico de barras dobles que compara los datos sociodemográficos de las madres y los padres con discapacidades, con los de sus pares son discapacidades. El 13 % de las familias no discapacitadas eran afroamericanas no hispanas, mientras que el 18 % de las familias con discapacidades eran afroamericanas no hispanas. Condición de padre o madre soltero/a: El 28 % eran personas sin discapacidades y el 46 % eran personas con discapacidades. Condición de abuelo/a: El 2 % eran personas sin discapacidades y el 9 % eran personas con discapacidades. Por debajo del umbral de pobreza: El 11 % eran personas sin discapacidades y el 27 % eran personas con discapacidades. Estado de residente rural: El 7 % eran personas sin discapacidades y el 10 % eran personas con discapacidades.

Infografía con el título “El acceso a internet es un determinante social de la salud”, donde la expresión “determinante social” aparece resaltada. En el centro se muestra una ilustración de una familia utilizando una computadora portátil dentro del contorno de una casa, con una señal de Wi-Fi sobre el techo. Uno de los padres utiliza una silla de ruedas. Alrededor de la familia aparecen seis íconos conectados por líneas punteadas que representan áreas influenciadas por el acceso a internet: Educación, Comunicación, Telesalud, Bienestar familiar, Beneficios y servicios, y Oportunidades.

Gráfico de barras que muestra el acceso a Internet. El 97 % de las madres y los padres sin discapacidades tenía algún tipo de acceso a Internet, comparado con un 94 % para las madres y los padres discapacitados. El 81 % de las madres y los padres sin discapacidades tenía acceso a Internet de alta velocidad, comparado con un 74 % para las madres y los padres discapacitados.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · last mo.

NEW Research at a Glance 🔍 Our latest brief found that #ParentsWithDisabilities are between 1.73 and 2.32 times more likely to lack #InternetAccess than non-disabled parents. Learn more: zurl.co/3YyGj

Bar chart showing likelihood of lacking internet based on disability type. People with any disability were 1.79 times more likely to lack internet access. Self care disability, 2.32 times. Vision disability, 2.15 times. Hearing disability, 1.86 times. Independent living disability, 1.98 times. Ambulatory disability, 2.24 times. Cognitive disability, 1.73 times.

A double bar chart comparing socio-demographic data of parents with disabilities and parents without disabilities. 13% of nondisabled families were non-hispanic and Black, while 18% of disabled families were non-hispanic Black. Single parent status: 28% for nondisabled, 46% for disabled. Grandparent status: 2% for nondisabled, 9% for disabled. Below the poverty line status: 11% of nondisabled, 27% of disabled. Rural residence status: 7% of nondisabled, 10% of disabled.

Infographic with the headline “Internet access is a social determinant of health,” with “social determinant” highlighted. At the center is an illustration of a family using a laptop together inside a house outline, with a Wi-Fi signal above the roof. One parent is shown using a wheelchair. Surrounding the family are six icons connected by dotted lines representing areas affected by internet access: Education, Communication, Telehealth, Family Wellbeing , Benefits & Services, and Opportunities.

Bar chart showing internet access. 97% of nondisabled parents had any internet access, versus 94% of disabled parents. 81% of nondisabled parents had high-speed internet access, versus only 74% of disabled parents.

Lurie Institute for Disability Policy @lurieinstitute.bsky.social · last mo.

In this Between the Lines interview, speakers discuss the serious health impacts on formerly incarcerated older adults, citing our 'Access to Home-and Community-Based Services for People with Disabilities Leaving Incarceration: Barriers and Policy Priorities' report. btlonline.org/studies-find...

Studies Find Serious Health Impacts on Formerly Incarcerated Older Adults

Wanda Bertram, communications strategist with the Prison Policy Initiative, discusses studies on the health impacts of incarceration older adults and the implications for their well-being.

btlonline.org