Institute for Health and Disability Policy Studies

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...
https://www.disabilityscoop.com/2026/01/05/medicaid-changes-could-limit-access-for-people-with-disabilities-advocates-warn/31789/

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.”

New Year Brings Big Changes For ABLE Accounts Access to accounts that allow individuals with disabilities to save without losing government benefits will expand dramatically and people with the accounts will be able to save more than ever before.

"ABLE accounts will be available to Americans with disabilities that onset by age 46 beginning in January. Until now, the age limit has been 26." Read more about 2026 and ABLE accounts here: https://www.disabilityscoop.com/2025/12/18/new-year-brings-big-changes-for-able-accounts/31784/ #ABLE #PwD

A blue and gold digital flier from the National Council on Disability announcing a public request for feedback. Large white headline reads: ‘NCD Requests Public Feedback.’ Below, text states that the National Council on Disability is inviting public comments to help inform a federal policy brief on disability clinical care and competency training for medical professionals. Community members, caregivers, healthcare providers, educators, and individuals with lived experience are encouraged to participate and share insight to help shape future standards in disability-inclusive healthcare. At the bottom left, text shows the submission deadline: January 6, 2026 — 11:59 PM EST. Bottom right includes a button labeled ‘Visit Website: Share your input.’ Decorative gold and white megaphone illustration is centered beneath the headline, and the top features the National Council on Disability logo.

The National Council on Disability is requesting public input to help shape a policy brief on disability clinical care and competency training. Share your perspective by January 6, 2026 at 11:59 PM EST.

Share your input here:
www.ncd.gov/2025/12/01/d...

We are greatly saddened to learn of the passing of Bob Kafka.

Rest in power Bob.

35 years after ADA, people with disabilities still find hotels unaccommodating AN NPR survey finds that people with disability still find hotels unaccommodating, even 35 years after passage of the Americans with Disabilities Act.

AN NPR survey finds that people with disability still find hotels unaccommodating, even 35 years after passage of the Americans with Disabilities Act. n.pr/48VPxj2

Health Equity - AAHD Health equity becomes more possible when every person with a disability can access the supports and services they need to live a full life. Through legal and policy approaches, US public health…

Our final #PolicyBlog of 2025 reviews the legal protections that help combat discrimination against people with disabilities, with a focus on healthcare:
aahd.us/2025/12/heal...

Sign up for our newsletters to follow our policy work in 2026:
bit.ly/AAHD-Subscribe
#PolicyFocus #DisabilitySky

Particularly looking for more mentees and mentors in the following time zones: UTC+0, UTC+1, UTC+3, UTC+10! #DisabledInSTEM

A KU study to increase access to fitness for people with disabilities is expanding. In #Lawrence, so is Kaw Valley CrossFit, with increased space for adapted equipment and training. The public is invited to a ribbon cutting at 4 p.m. Dec. 19 to learn more. https://loom.ly/htRwLhs

Head Start centers told to avoid 'disability,' 'women' and more in funding requests New court documents reveal a list of nearly 200 words or phrases the Trump administration told Head Start programs it does not want to see in their funding requests.

New court documents reveal a list of nearly 200 words or phrases the Trump administration told Head Start programs it does not want to see in their funding requests. n.pr/497P6C4

A snowy residential street with cars buried in snow is shown. Overlaid text reads “Accessing FEMA Disaster Relief.” The U.S. Department of Homeland Security seal appears on the left. Text at the bottom reads “Katherine Scala, CRDJ Intern,” and the Center for Racial & Disability Justice logo appears in the lower left corner.

Accessing disaster aid can be overwhelming, especially for disabled people, elders, people of color, & low-income communities. FEMA is often the main system people are directed to after a disaster, but navigating it is not always transparent or easy. This guide breaks down the real steps. [1/7]

Disability & Health Scholarship Program now accepting applications. American Association on Health and Disability.

We’re now accepting applications for our 2026 Scholarship on Health & Disability! This award is made each year to undergraduate/ graduate students pursuing studies in the broad field of #DisabilityHealth. Due: March 6, 2026
Share this opportunity: aahd.us/initiatives/...
#Disability #DisabilitySky

Supreme Court To Hear Case On Intellectual Disability The U.S. Supreme Court is set to hear arguments in a case that advocates say could have major implications for how intellectual disability is defined.

The U.S. #SupremeCourt is set to hear arguments in a case that advocates say could have major implications for how #IntellectualDisability is defined. #disabilities #SCOTUS

Disability Covid Chronicles Documenting the experiences of disabled and chronically ill people during the current COVID-19 pandemic, organized by the NYU Center for Disability Studies

This project from the @center4ds.bsky.social documented the experiences of disabled and chronically ill people during the COVID-19 pandemic.

disabilitycovidchronicles.nyu.edu

#Covid19 #LongCovid #disability

The @bazeloncenter.bsky.social has released a short guide for states to support people with disabilities in light of impending changes to Medicaid.

Read more at:

Guide:
www.bazelon.org/wp-content/u...

Bazelon's site:
www.bazelon.org

HDI grant to advance employer engagement strategies in vocational rehabilitation | UK Research The UK Human Development Institute received $3.2 million in funding from the U.S. Department of Education to support a nationwide effort to engage employers and improve job opportunities for people wi...

UK’s Human Development Institute (HDI) received $3.2 million in funding from the U.S. Department of Education to support a nationwide effort to engage employers and improve job opportunities for people with disabilities.

Learn more: https://bit.ly/3MAklNd