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Institute for Health and Disability Policy Studies @ihdps.bsky.social · 6h

To follow up on Tuesday's post -

Please visit essentialdata.us

It shows how good data can be crucial for funding and services.

E.g. Today we heard in Langston University RRTC's employment listening session that poor data for special education through employment is leading to a lack of support

America's Essential Data

Highlighting examples of how our essential public data serve the American people.

essentialdata.us

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 2d

Disability Health Equity Research Network (DHERN)
asi.syr.edu/disability-h...

Disability Health Equity Research Network (DHERN)

About DHERN The Disability Health Equity Research Network (DHERN) supports disability health equity research, connects researchers and trainees, and fosters the inclusion of disabled people in thes...

asi.syr.edu

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 2d

Disability Health Equity Research Network (DHERN)
asi.syr.edu/disability-h...

Disability Health Equity Research Network (DHERN)

About DHERN The Disability Health Equity Research Network (DHERN) supports disability health equity research, connects researchers and trainees, and fosters the inclusion of disabled people in thes...

asi.syr.edu

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 2d

America's Essential Data website:
essentialdata.us

America's Essential Data

Highlighting examples of how our essential public data serve the American people.

essentialdata.us

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 2d

America's Essential Data website:
essentialdata.us

America's Essential Data

Highlighting examples of how our essential public data serve the American people.

essentialdata.us

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 2d

Denice Ross post on LinkedIn:
www.linkedin.com/posts/denice...

Federal data: Nat'l Disability Employment Awareness Month | Denice Ross

Working age people with disabilities are employed at **half the rate** of the non-disabled population (thank you, Current Population Survey for those 2024 numbers 🙏 ). No surprise, federal data are on...

www.linkedin.com

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 2d

Denice Ross post on LinkedIn:
www.linkedin.com/posts/denice...

Federal data: Nat'l Disability Employment Awareness Month | Denice Ross

Working age people with disabilities are employed at **half the rate** of the non-disabled population (thank you, Current Population Survey for those 2024 numbers 🙏 ). No surprise, federal data are on...

www.linkedin.com

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 2d

Datasets from Transportation, Labor, and Commerce departments connect employers with talented Americans with disabilities.

#DisabilityData #ResearchMatters

(Links in comments) - Post 2 of 2

text: A nonprofit disability organization launches a small business accelerator when they learn from the Current Population Survey's disability labor force characteristics data that workers with disabilities are twice as likely to be self-employed than work for someone
image: a woman sitting and drawing on an easel

text: The bad news is all of these datasets are at risk. The good news resources like EssentialData.us help make the case for how federal datasets benefit American lives and livelihoods.

text: learn more at EssentialData.us psst did you know? these graphics are made by a disabled designer heart kate

text & images: image credits - man with bus - metropolitan transportation authority via Flickr, woman on couch - resume genius via Unsplash, woman drawing - European disability forum via Flickr, man with pig - U.S. department of Agriculture via Flickr

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Institute for Health and Disability Policy Studies @ihdps.bsky.social · 2d

U.S. Chief Data Scientist @denicewross.bsky.social worked with the Disability Health Equity Research Network (DHERN) to show the connection between disability data to real outcomes for people with disabilities.

#DisabilityData #ResearchMatters

(Links in comments) - Post 1 of 2

text: a wheelchair user has an easier commute to work thanks to expanded door-to-door transit services in response to the National Household Travel Survey showing the employment barriers faced by adults with travel-limiting disabilities
image: man with wheelchair entering bus

text: A cancer patient continues working during treatment because they find info about workplace accommodations that match their symptoms and job duties in the Job Accommodation Network Situations and Solutions finder database, from the Office of Disability Employment policy
image: woman sits on couch using her laptop

text: A farmworker paralyzed in a combine accident finds the right assistive tech to continue working with help from AgrAbility, a USDA-funded program that exists to serve the 2 in 10 farmers who are living with disabilities, a need made visible by American Survey Data
image: a man with a wheelchair feeds a pig

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Institute for Health and Disability Policy Studies @ihdps.bsky.social · 7d

Its use of electronic and computer-aided tools where many people cannot receive usable text messages or do not have internet access is amazing, and they are looking to expand services to more areas in the future.

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 7d

This website & resource is for mothers in Nigeria to call in to learn about maternal healthcare in many languages - familiasolutions.org .

This resource helps combat medical misinformation, as well as allowing scheduling and reminders for healthcare check-ups.

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Institute for Health and Disability Policy Studies @ihdps.bsky.social · 7d

We are at the last day of Center on KTDRR 's 2025 Virtual Knowledge Translation (KT) Conference this year, and are learning about lots of great KT resources!

One is a pilot project in Nigeria presented by Charles Chibuisi Ehiemere - Familia Solutions. More info in comments.

Website screenshot. Familia Supporting Maternal & Child Health Empowering women of reproductive age with digital health solutions for better maternal and child health outcomes

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Institute for Health and Disability Policy Studies @ihdps.bsky.social · 9d

We are learning about great resources at KTDRR's 2025 KT Conference!

One is "Thinking for Me" - a comic by advocate Giancarlo Vicari for youth about turning 18 and talking to parents about alternatives to guardianship.

It is available as video and pdf:
youth-voice.org/youth-ambass...

Giancarlo Vicari - Center on Youth Voice, Youth Choice

Giancarlo was born on October 30th, 2008, in Summit New Jersey and is growing up in Union, New Jersey. He was first educated at Washington Elementary School in Union, New Jersey then from 2nd grade to...

nam10.safelinks.protection.outlook.com

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 14d

From @aapd.com -

What the Trump Administration’s Reduction-in-Force Means for People with Disabilities

Civil protections, reasonable accommodations, and other services will likely be impacted

www.aapd.com/explainer-wh...

Explainer: What the Trump Administration’s Reduction-in-Force Means for People with Disabilities - AAPD

What is a Reduction-in-Force (RIF)? A Reduction-in-Force (RIF) is a process in which an employer permanently eliminates some positions, resulting in layoffs. For any employer, RIFs can happen for reas...

www.aapd.com

Institute for Health and Disability Policy Studies @ihdps.bsky.social · 16d

The new journal article from IHDPS shows a link between transportation access and better social connectivity and health for people with disabilities.

Read more in the Journals of Transport and Health:
doi.org/10.1016/j.jth.2025.102165

#DisabilityResearch #DisabilityHealth #DisabilityTransport

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Reposted by Institute for Health and Disability Policy Studies

KU Center on Disabilities @kucdisabilities.bsky.social · 22d

The KUCD team was honored to present at the annual SOAR Conference in Omaha, NE!

Communications Specialist Austin Myers and Research Assistant Ryan Henley presented the stories of self-advocates and led a group discussion about the importance of advocating for oneself and the barriers people face.

Six people pose for a photo in front of the SOAR conference banner. Two people sit in power chairs and four people stand.

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Reposted by Institute for Health and Disability Policy Studies

DrKaraAyers @drkaraayers.bsky.social · 24d

Our Disability Research Lab is set for our biggest year yet as we are now funded! Join us for our kick-off meeting Thursday, October 16 at 12pm EST. To register for our first meeting, sign up here (or via QR code in image): lnkd.in/gCwd3s5P

The Disability Research Lab is recruiting new members. We are looking for researchers with disabilities at any stage of their career and in any field. Join us for our kick-off meeting Thursday, October 16 at 12pm EST. A QR code is available to register or the link is in the body of the post. Email Kara at kara.ayers@cchmc.org with questions.

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KU Life Span Institute @kulifespan.bsky.social · 27d

October is National Disability Employment Awareness Month! Our researchers at @kucdisabilities.bsky.social and @ihdps.bsky.social are working with #Kansas to support equitable treatment for disabled employees. #NDEAM #KUresearch

A man sitting at a desk wearing a hearing aid speaks in sign language to an individual on his laptop during a video conference call while a woman sits at another desk nearby working separately

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The Arc of Massachusetts @thearcofmass.org · 28d

NEW: The Arc US provides an overview of what the federal government shutdown means for people with disabilities - ranging from Social Security, to Medicaid, to SNAP, and beyond.

https://thearc.org/blog/federal-government-shutdown-what-people-with-disabilities-should-know/

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.

thearc.org

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Reposted by Institute for Health and Disability Policy Studies

American Association on Health & Disability @aahealthdisability.bsky.social · Sep 29

Disability Research funded by NIDILRR improves community living and participation, health and function, and employment for people with disabilities. Full funding for NIDILRR is needed to improve health for all: aahd.us/2025/09/disa... #DisabilitySky #Disability #NIDILRR #ACL #DisabilityResearch

Disability Research - AAHD

High-quality disability research helps make important advances in policy, technology, and daily living to support people with disabilities. Good research requires comprehensive and accurate data, and…

aahd.us

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Reposted by Institute for Health and Disability Policy Studies

DisabledInSTEM @disabledinstem.bsky.social · Sep 20

✨My first science feature is out in Chemical & Engineering News!✨

I interviewed and wrote about Dr. Shana V. Stoddard, a brilliant disabled scientist changing STEM.

Disabled scientists deserve visibility and celebration.

cen.acs.org/synthesis/me...

#DisabledInSTEM #SciComm #RepresentationMatters

Shana V. Stoddard: How to create an environment for all science students to succeed

Grad student <b>Alyssa T. Paparella</b> talks with this computational biochemist about adjusting work styles and leaning on community

cen.acs.org

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Reposted by Institute for Health and Disability Policy Studies

Thriving Autistic @thrivingautistic.bsky.social · Sep 23

Offering a glimmer to our community today.

Thank you for sharing @stimpunks.org

Find out about our Discovery Programme and our other animations here:
www.thrivingautistic.org/autistic-exp...

www.thrivingautistic.org/discovery-ev...

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Institute for Health and Disability Policy Studies @ihdps.bsky.social · Sep 17

Although the COVID virus has changed, it continues to make people ill.
tinyurl.com/36f5erte

And our research shows people with disabilities are more likely to have complications from COVID. muse.jhu.edu/article/959114

#Covid19 #DisabilityHealth

Lasting Scars: Living with COVID-19 long after infection

When COVID-19 upended the world in 2020, Dr. Ziyad Al-Aly was studying climate change, medication side effects and other big data questions.

tinyurl.com

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American Association on Health & Disability @aahealthdisability.bsky.social · Aug 20

Self-Direction in care has become possible thanks in large part to #Medicaid HCBS. With cuts on the horizon, these programs will need additional support and advocacy to continue. Learn more: aahd.us/2025/08/poli... #disability #DisabilitySky

Self-Direction in Care - AAHD

The movement towards self-direction in essential programs for independent living is an important advancement for the civil rights of people with disabilities. Not only should disabled people have the…

aahd.us

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Lurie Institute for Disability Policy @lurieinstitute.bsky.social · Sep 8

People with disabilities are often left out of conversations on emergency preparedness, including parents who must ensure both their own safety and their children’s during a disaster.

We’ve compiled extended Frequently Asked Questions (FAQs) from our recent Disaster Preparedness Webinar,

Extended FAQs graphic. Disaster Preparedness: A Resource by and for Disabled Parents. Illustration of parents with disabilities holding their children, with a box of emergency supplies between them.

If we get displaced from a disaster, how can we help make our kids feel safe and hopefully prevent meltdowns in a new place? Bring items that are familiar to your child that will make them feel comfortable and safe. Make sure your go-bag has your child’s favorite comfort items, fidget toys, small games, or books. Also, pack familiar non-perishable snacks and drinks. Ask your child what things they would most like to have with them if they had to be away overnight. Have honest, age appropriate conversations with your child about the possibility of disasters and the best ways that your family can stay safe. Keep your child informed about what is happening and where you are going, and when you might be leaving. If you can, model calm behavior that communicates that the situation is serious but that you will be with them. If you have pets, reassure them that you will do everything you can to keep them safe.

How do you evacuate multiple individuals with disabilities during a fire? Every structure and every fire is different, so it’s best to discuss this with your local fire and emergency services departments. Ask if they will come to your home to assess the layout and help you make an evacuation plan. They may be able to help you practice your plan. The American Red Cross has a program called Sound the Alarm, in which they will provide the same type of service, assessing your home and helping you develop a plan to evacuate. They will also install smoke detectors, including some with visual and audio indicators. Illustration of workers evacuating a burning building.

Are there rules that require pharmacies to provide a backup supply of medications to a disabled parent when the supply chain is disrupted by a disaster? There are no such rules, but during previous larger disasters, the bigger chain pharmacies, such as CVS and Walgreens, have demonstrated their commitment to the needs of their customers during disasters. Many/most can do what is called a vacation override to provide a one-time refill, with the expectation that a disaster survivor will reconnect as quickly as possible to their local providers. In federally declared disasters, there are programs that may be activated for the replacement of medications, but they are only offered to people who have no health insurance.

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