A collage of individuals with disabilities with text that reads: We can't actually solve health disparities unless we include the people who are experiencing them, a quote by Dr. Susan Passmore, PhD. Text below the image reads: Help inform disability research.

Joining the AAHD Research Listserv allows you to know about any upcoming research studies you can participate in to ensure science is serving everyone. Receive disability & health research opportunities in your inbox: bit.ly/AAHD-Subscribe

National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR). We call on Congress to increase the NIDILRR budget to $150 Million in 2027. With an increase in funding, NIDILRR will be able to provide overdue cost-of-living increases to support disability researchers doing this important work.

In FY 2023*, NIDILRR funded: 271 grants supporting 1,500+ research projects. This was done with $112.5 million in funding to support essential disability community health needs (based on the most recently available data). NIDILRR continues to have a tremendous impact.

These distinguished studies were made possible by NIDILRR. Outcomes of Person-Centered Planning in Medicaid Home- and Community-Based Services. Published in the Gerontologist. Authors: Chong et al. This study found Person-Centered Planning* was being used by the majority of HCBS recipients in 12 states studied. Participation in decision-making improves the community living experience. *Where people with disabilities help plan their own HCBS services and supports.

Study Highlights. Long COVID Among People With Preexisting Disabilities. Published in AJPH. Authors: Hall et al. Takeaway: Long COVID occurred more frequently in people with pre-existing disabilities than among the nondisabled population. This work illuminates the longstanding barriers to health care and higher risk of exposure to COVID-19 affecting the disability community. Second study: An Accommodation for Whom? Has the COVID-19 Pandemic Changed the Landscape of Flexible and Remote Work for Workers with Disabilities? Published in Employee Responsibilities and Rights Journal. Author: Brooks. Takeaway: A select group of disabled workers were the main group to benefit from COVID-19 related remote work. Overall, workers with disabilities had fewer remote work options than nondisabled workers during the pandemic. Better accommodations and employment options can support all disabled workers’ needs.

Today we're on Capitol Hill with the Alliance for NIDILRR Grantees & the Disability & Rehabilitation Research Coalition (DRRC) to advocate for additional funding for the National Institute on Disability, Independent Living, and Rehabilitation Research. NIDILRR is a keystone for disability research!

In today’s #scholarcrip, Aspen Lillywhite & Gregor Wolbring interview disabled students to understand the reality of disabled undergrads as knowledge producers. Participants felt that disabled undergrads were insufficiently exposed to/supported in the identity of being knowledge producers.

Trump Budget Calls For Eliminating Key Disability Programs President Donald Trump wants to stop directing federal funds to the nation's university centers on developmental disabilities, multiple Individuals with Disabilities Education Act programs and much mo...

President Donald #Trump wants to stop directing federal funds to the nation’s university centers on developmental #disabilities, multiple Individuals with Disabilities Education Act programs and much more. #SpecialEducation #funding

Families Defend Disability Services Amid Medicaid Cuts - KFF Health News Idaho is positioning to slash Medicaid funding as state lawmakers grapple with the effects of the federal One Big Beautiful Bill Act, which President Donald Trump signed into law last year. On the tab...

Idaho Gov. Brad Little signed a bill last week that will cut nearly $22 million to Medicaid disability services. The changes will lower reimbursement for caregivers.

Families warn the cuts could be catastrophic.

@realbrambo.bsky.social reports ⤵️

In 2023 in Kansas, Medicaid covered 87% of all public IDD funding. And non-Medicaid sources covered just 13% of all IDD funding.

A line graph shows change over time from $190M in 1977 to $721.1M in 2023. Text reads: Kansas has increasingly relied on Medicaid to fund intellectual or developmental disabilities services in the state.

A line graph shows the change over time from $100.2M in 1977 to $104.3M in 2023. Text reads: Non-Medicaid spending for intellectual or developmental disabilities has barely changed in Kansas since 1977.

Quote: If states have fewer resources to allocate from Medicaid, they may shift to a greater emphasis on institutional settings. Shea Tanis, Ph.D.Director of the State of the States in IDD

Kansas families are facing a crisis with a projected loss of $3.9B in federal #Medicaid funding over the next decade. @kucdisabilities.bsky.social has tracked #IDD funding for 43 years. Here's what has researchers worried: https://loom.ly/tQ84Ujg
#KUresearch

Headshot photo of Jean Hall - a white woman with glasses and shoulder length brown hair

Former IHDPS Director Jean Hall has been chosen by the Kansas Commission on Disability Concerns as their Tuesday Trailblazer for her work on health insurance and other disability research.

www.facebook.com/share/p/1BX9...

🚨New Data alert! 🚨 The 2024 5-year American Community Survey (ACS) and Puerto Rico Community Survey (PRCS) data are now available on IPUMS USA. usa.ipums.org

Caregiving Is an Economic Security Issue for Disabled People - Disability Belongs™ Caregiving is not a side issue. It is central to how disabled people live, work, and remain in their communities.

When we conduct the National Survey on Health and Disability, we ask people about their use of personal assistance services.

This article from @disabilitybelongs.bsky.social explains how people rely on personal assistance and other forms of support to remain independent in their communities.

In Switching to Original Medicare, Beware of Medigap Plan Refusals - KFF Health News Open enrollment season lasts until March 31 for people enrolled in Medicare Advantage who want to switch to original Medicare, but there’s a potential hitch.

Nearly 10% of Medicare Advantage enrollees will be forced to disenroll this year because their plan will leave the local market.

For those switching to original Medicare, getting a supplemental Medigap plan to cover some out-of-pocket costs can be tricky.

Analysis: Why the research money isn’t flowing from NSF and NIH White House review of agency spending plans for this year is causing delays

Wondering why NIH and NSF aren't making new grants? We explain what's happening at OMB. www.science.org/content/arti...

Black-and-white photo from March 12, 1990, showing disability rights activists during the Capitol Crawl protest at the U.S. Capitol. Activists left their wheelchairs and mobility devices and crawled up the Capitol steps while photographers and supporters looked on. The U.S. Capitol dome is visible in the background. Text on the image reads, “March 12, 1990. Disability rights activists abandoned wheelchairs and mobility aids to crawl up the U.S. Capitol steps.” The graphic also includes the campaign message, “We’re Here. Then, Now, Always.” and the NACDD logo. 

There was a time when many people with developmental disabilities were hidden, segregated, or excluded from community life. 

History matters. 

Not for nostalgia — for understanding. 

#DDAM2026

Last summer, the Social Security Administration (SSA) removed live customer service metrics from its website.

Around then, we started interviewing 52 benefits specialists, who serve over 8000 disability claimants nationwide. These are folks who deal with SSA regularly and know how it operates. 3/x

People in need of disability benefits are facing new barriers – and government cuts and overhauls are to blame - Binghamton News A new report featuring faculty at Binghamton University reveals that 2025 changes to the federal benefits system have made it significantly harder for Americans to access disability benefits.

Article on the joint @aapd.com and @dredf.bsky.social report on increased challenges people with disabilities have in qualifying for or maintaining Social Security benefits under new policies, which include experts being shifted into phone-answering positions.

tinyurl.com/4c38wcbx

Are you disabled and thinking about becoming pregnant? Sign up for our Research Listserv to get this week’s newsletter update featuring a study on a pilot Pregnancy Decision Making App. Open to people with developmental disabilities. A woman with pink hair works on a tablet on a park bench.

Sign up for our Research Listserv to receive updates on disability-focused health studies every month. You can subscribe at: bit.ly/AAHD-Subscribe

Share this opportunity with the disabled people considering pregnancy in your life. Thanks for helping us spread the word! #DisabilitySky #Disability

AAPD and Disability Rights Education & Defense Fund are proud to share important new independent research about recent changes in the Social Security Administration (SSA). This research confirms advocate concerns and provides recommendations for improvement. Read it here: https://ow.ly/v8JF50Yo94T

DSPs as a Social Determinant of Health of People with IDD - The Council on Quality and Leadership By Carli Friedman, CQL Director of Research Direct support professionals (DSPs) play a vital role in helping promote the health, safety, community integration, and quality of life of people with…

Direct support professionals (DSPs) help with health, safety, being part of the community, and making sure people with intellectual and developmental disabilities live the lives we want to live. The DSP crisis means less people have access to support we need. www.c-q-l.org/resources/ar...

Major gaps in federal health care and disability data, GAO finds A recent report found that federal data collection does not capture the full experience and count of disabled people

The Government Accountability Office (GAO) released findings showing that federal data systems fail to capture the unique barriers disabled people face in health care.

When federal data does not capture these experiences, they remain invisible to policymakers.

A Message from Theo Braddy: We Cannot Fix What We Refuse to Define - National Council on Independent Living Listen to the audio version of this message Hello again. This is Theo W. Braddy, Executive Director...

A Message from Theo Braddy: We Cannot Fix What We Refuse to Define

I recently logged off a high-level stakeholder meeting with a disturbing realization. People in the room were making major decisions about HCBS without a shared understanding of what those services actually are.

bit.ly/4tYiYth

KU disability research center nationally recognized for community partnership The Kansas University Center on Disabilities credits its community partnership with the Self Advocate Coalition of Kansas, which has supported training and technical assistance, information disseminat...

Congrats to @kucdisabilities.bsky.social - KU Center on Disabilities!

They are among five national recipients of the Excellence in Community-Engaged Partnerships Award for work partnering with the disability community as active members of inclusive research and dissemination teams.

Recent Changes to Immigration Policies Have Disastrous Impacts on Disabled People and Long-Term Care - AAPD In January 2025, just two weeks before President Trump’s second inauguration, I was approved by the state of Wisconsin to receive Home and Community-Based Services (HCBS), a form of long-term care tha...

"Medicaid cuts and immigration raids only make... already pressing issues worse. 32% of the home care workforce is staffed by immigrants, and immigrants make up 21% of staff in nursing homes."

Excellent piece by @racheldl.bsky.social for @aapd.com:
www.aapd.com/recent-immig...

Seeking Participants for NIDILRR Match-Making Sessions

ACL/NIDILRR is hosting matchmaking sessions to connect researchers and developers in the community to share information, discuss common interests, and find research partners.

From Kansas to the world: KU’s WHO collaboration works to promote global health By delivering a digital “toolbox” to 300 countries, researchers at the Center for Community Health and Development are bringing life-saving lessons back home to Kansas.

Tools to support health and human development in Kansas and across the world at the heart of a 20-year partnership between @who.int and the KU Center for Community Health and Development.

Learn more at: https://loom.ly/pKs0ELI

Winter Weather: Grantees Share Emergency Preparedness Resources NIDILRR grantees shared some timely resources to help people with disabilities and others in the community prepare for, and recover from, the winter weather!

The National Rehabilitation Information Center (NARIC) has collected a list of resources for emergency preparedness and recovery from NIDILRR organizations.

Our Year in Review 2025 highlights some of the most significant aspects of our work over the past year. Distinct from our Annual Report (coming soon), this review focuses on the key themes that shaped our activities throughout the year. Explore the review here: zurl.co/mwVwd

Black and white portrait of Ed Roberts, pioneer in disability rights, with the years 1939-1995 and text that says "remembering Ed Roberts".

Today we celebrate Ed Roberts on what would have been his 87th birthday. Ed Roberts had a huge influence on Berkeley creating the first independent living service and advocacy program run by and for people with disabilities. His impact on the disability rights movement cannot be overstated.

New Medicaid community engagement rules in federal law could seriously harm people who are medically fragile, even though the law says they should be exempt. Experts from Justice In Aging will share a new toolkit to help advocates speak up now and throughout the rollout of these rules. The goal is to make sure states put safeguards in place to prevent people from losing coverage. Zoom captioning is available for this event. If you require other accommodations to participate, please detail them in your registration. We will have the most success fulfilling your accommodation requests if they are submitted by January 7th.

Community Webinar Alert!

Topic: An Advocate's Toolkit for Broad #Medicaid Exemption Implementation

Date: Wednesday, January 14
Time: 4 - 5pm ET

Free to attend; registration required

Link to register: us02web.zoom.us/meeting/regi...

#disability #disabilityadvocate #selfadvocate #nacdd #disabled

Welcome to 2026: What’s New with You?

Throughout the year, members of the NIDILRR grantee community send us updates about their work, like new articles we can add to our library, awards or achievements based on their NIDILRR-funded research, or cool tools or resources that the community can use.…

Medicaid Changes Could Limit Access For People With Disabilities, Advocates Warn As federal officials begin to outline more stringent Medicaid eligibility rules, worries are running high about what the changes will mean for people with disabilities.

"As federal officials begin to outline more stringent Medicaid eligibility rules, worries are running high about what the changes will mean for people with disabilitie...
www.disabilityscoop.com/2026/01/05/medicaid-chan...

Hero of 2025: Alice Wong The disability justice icon's last message: "Don’t let the bastards grind you down."

“I’m honored to be your ancestor and believe that disabled oracles like us will light the way to the future. Don’t let the bastards grind you down. I love you all.”