Institute for Health and Disability Policy Studies
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ihdps.bsky.social
Institute for Health and Disability Policy Studies
@ihdps.bsky.social
110 followers 170 following 85 posts
To conduct timely and meaningful research and evaluation to inform health and disability policy, with the goal of improving access and quality of care for all people, particularly for those with disabilities and chronic illnesses.
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ihdps.bsky.social
Institute for Health and Disability Policy Studies @ihdps.bsky.social · Aug 5
The 2025 National Survey on Health and Disability (NSHD) is now closed!

While we look at the information people have shared, we invite you to sign up for our newsletter to stay in the loop about disability research news, resources, and other opportunities: tinyurl.com/ycxepyzk
Text: Thank you to everyone who participated in the National Survey on Health and Disability (NSHD) by contributing your voice, sharing the survey with the disability community, or conducting research that guides disability policy. Without your efforts, our work would not succeed! Image: A large diverse group of people, including people with disabilities
ihdps.bsky.social
What does the government shutdown mean for people with disabilities?

This explainer from American Association of People with Disabilities has information on what to expect, as well as some resources (feedingamerica, Food Security Network) that people can use.

www.aapd.com/explainer-wh...
Explainer: What the Government Shutdown Means for SNAP, WIC, and Disability Programs - AAPD
Update as of October 27, 2025: The federal government shutdown is now in its fourth week, with no immediate end in sight. As you can read about in our previous explainer, Congress has failed to pass a...
www.aapd.com
November 6, 2025 at 9:00 PM
ihdps.bsky.social
New journal article from IHDPS explores whether having a proxy leads to people with disabilities being incorrectly represented in survey data.

Read the full article at: www.frontiersin.org/journals/res...

#DisabilityResearch #DisabilityData
Text: Does who responds matter?: exploring potential proxy response bias in the Washington Group Short Set disability estimates Aaron Beuoy & Kelsey Goddard Published in Frontiers in Research Metrics and Analytics DOI: 10.3389/frma.2025.1654769 Images: A black man using a wheelchair talks to a woman in a suit who holds a clipboard with information between them, KU The University of Kansas Institute for Health and Disability Policy Studies logo
November 4, 2025 at 9:03 PM
ihdps.bsky.social
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
October 30, 2025 at 7:42 PM
ihdps.bsky.social
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
October 28, 2025 at 7:50 PM
ihdps.bsky.social
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: federal datasets for national disability employment awareness month that keep disabled Americans going images: man with wheelchair entering bus, man with wheelchair feeding pig, Disability Health Equity Research Network logo, FAS federation of American scientists logo, America's Essential Data logo 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
October 28, 2025 at 7:48 PM
ihdps.bsky.social
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
October 23, 2025 at 7:37 PM
ihdps.bsky.social
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
October 21, 2025 at 5:12 PM
ihdps.bsky.social
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
October 16, 2025 at 6:50 PM
ihdps.bsky.social
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
The moderating effects of perceived transportation access on health and social connectedness for people with disabilities Published in Journals of Transport & Health DOI: 10.1016/j.jth.2025.102165 Man using a wheelchair uses a lift to enter a van with assistance from another man KU The University of Kansas Institute for Health and Disability Policy Studies logo
October 14, 2025 at 7:50 PM
Reposted by Institute for Health and Disability Policy Studies
kucdisabilities.bsky.social
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.
October 8, 2025 at 4:00 PM
Reposted by Institute for Health and Disability Policy Studies
drkaraayers.bsky.social
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.
October 6, 2025 at 11:39 PM
Reposted by Institute for Health and Disability Policy Studies
kulifespan.bsky.social
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
October 3, 2025 at 4:05 PM
Reposted by Institute for Health and Disability Policy Studies
thearcofmass.org
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
October 2, 2025 at 1:00 PM
Reposted by Institute for Health and Disability Policy Studies
aahealthdisability.bsky.social
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
September 29, 2025 at 5:44 PM
Reposted by Institute for Health and Disability Policy Studies
disabledinstem.bsky.social
✨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
September 20, 2025 at 4:55 PM
Reposted by Institute for Health and Disability Policy Studies
thrivingautistic.bsky.social
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...
September 23, 2025 at 9:30 AM
ihdps.bsky.social
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
September 17, 2025 at 9:01 PM
Reposted by Institute for Health and Disability Policy Studies
aahealthdisability.bsky.social
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
August 20, 2025 at 2:15 PM
Reposted by Institute for Health and Disability Policy Studies
lurieinstitute.bsky.social
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.
September 8, 2025 at 4:50 PM
Reposted by Institute for Health and Disability Policy Studies
lurieinstitute.bsky.social
This new study analyzes data from the National Survey of Family Growth (2011–2019) to explore how disability status and type are associated with sexual and reproductive health (SRH) service receipt among young males in the United States.

Learn more: zurl.co/eJGSc
Sexual and Reproductive Health Care Receipt Among Male Adolescents and Young Adults With Disabilities: Analysis of National Survey of Family Growth Data, 2011–2019
Most research on sexual and reproductive health (SRH) care has focused on women with disabilities, leaving gaps in understanding SRH care among male a…
zurl.co
September 1, 2025 at 1:17 PM
ihdps.bsky.social
When otherwise eligible people, including those with disabilities, are kicked off of programs like Medicaid due to legislative changes, reinstating coverage can take months or more.

When people with health needs rely on Medicaid services every day to survive, that puts lives at risk.
September 2, 2025 at 6:42 PM
ihdps.bsky.social
Disability perspectives within health research is more important than ever.

Dr. Kara Ayers shares the importance of disability research in this video from @aahealthdisability.bsky.social

www.youtube.com/watch?v=C1dV...

#DisabilityResearch #DisabilityInclusion
The power of disability perspectives in health research - Kara Ayers
YouTube video by All of Us Research Program
www.youtube.com
August 28, 2025 at 6:12 PM
ihdps.bsky.social
Sign up for our newsletter at: tinyurl.com/ycxepyzk

#DisabilityResearch
A man in a wheelchair reads a newspaper. Text: Interested in disability research? Sign up for the IHDPS newsletter to learn more about the Data Analysis Team, ongoing research, and more! KU The University of Kansas Institute for Health and Disability Policy Studies logo
August 26, 2025 at 8:28 PM
Reposted by Institute for Health and Disability Policy Studies
kffhealthnews.org
The Trump administration's cuts of public health funds to state and local health departments had vastly uneven effects depending on the political leanings of where someone lives, a new KFF Health News analysis shows. kffhealthnews.org/news/article...
Blue States That Sued Kept Most CDC Grants, While Red States Feel Brunt of Trump Clawbacks - KFF Health News
The Trump administration's cuts of public health funds to state and local health departments had vastly uneven effects depending on the political leanings of where someone lives, a new KFF Health News...
kffhealthnews.org
August 26, 2025 at 4:20 PM
Reposted by Institute for Health and Disability Policy Studies
disabilityscoop.bsky.social
When children with #disabilities experience #discrimination, new research finds that the consequences may extend to their physical well-being.
Discrimination May Lead Kids With Disabilities To Skip Doctor Visits
When children with disabilities experience discrimination, new research finds that the consequences may extend to their physical well-being.
www.disabilityscoop.com
August 26, 2025 at 3:59 AM