- HHS announces plan to build a registry of autistic people. This week, the HHS announced plans to use private health data, from medical records down to wearable smart tech, to create a government registry of autistic people. The announcement sparked privacy concerns and comparisons to the 1939 registry for disabled children as part of T4, a program for the mass murder of 300K+ disabled people across occupied Europe.
Several state-level autism databases already exist for research and resource purposes, as do other condition-specific registries; however, participation in those is voluntary.
Limited reporting Friday stated that due to public outcry, the NIH is walking back registry plans and investing in other unspecified research, but nothing official from RFK yet (as of late Friday, 4/25).
Update: as of 4/26, reports of an emailed statement from an unnamed HHS official are here. The email states that there will be no “registry” and instead researchers will draw from limited data sets. - Actual autism-related research defunded. In last week’s diatribe against autistic people, RFK Jr. had vowed to find the cause of autism by September. NIH later moved back the timeline. However, other grants for longstanding autism research have been cut, including:
National Science Foundation grants featuring the words “accessibility” and “inclusion,” like one for the Frist Center for Autism and Innovation, which included work by autistic scholars.
The federal government’s Autism Research Program (ARP) omitted from 2025 appropriations.
Other NIH grants and programs continue to be delayed and cut as remaining employees parse through unfinished projects after many workers have been laid off. - RFK Jr. expands eugenic hit list, says disabilities are, “bankrupting our nation.” RFK’s quote: “Neurological disorders–ADD, ADHD, speech delay, language delay, tics, Tourette’s syndrome, narcolepsy, ASD ….All these are injuries I never heard of when I was a kid… There was $0 spent in this country treating chronic disease when my uncle was President. Today it’s $1.8 T annually. It’s bankrupting our nation….juvenile diabetes, rheumatoid arthritis, lupus, Crohn’s disease, were just unknown when I was a kid.”
RFK also said the diagnosis uptick endangers the nation because fewer qualify for military service.
Most conditions listed were discovered at the turn of the 20th century or before. However, disabled people were often institutionalized or lobotomized, decreasing their visibility, (especially in rich people circles like RFK’s).
Disabled people “draining society” is a eugenic talking point, and The word “injury” to describe disability and autism is also an antivax dog whistle.
His press conference was supposed to be about banning synthetic food dyes, which he did not do. - DOGE already has access to sensitive HHS data. While autistic people and allies rightfully sounded the alarm on the invasion of privacy that a national autism registry could bring, DOGE already has access to at least 19 of HHS’s systems, some of which contain sensitive information, and typically require specific specialized training before use.
Some of the systems are: Centers for Medicaid and Medicare Services (CMS, CALM), CMS’s Integrated Data Repository Cloud (contains patient info), several grant processing and personnel management systems, the Unaccompanied Alien Children portal, and accounting and payment systems across HHS, NIH, and CDC. - Supreme Court to hear case that could gut ADA/504 protections. Next week, SCOTUS will hear arguments related to the case A.J.T. vs. Osseo Area Schools. The case examines whether a disabled person must prove a party acted, “in bad faith or gross misjudgment” to claim their rights were violated.
The case, about accommodations for a disabled student, was originally narrow in scope and focused in K-12 ed, but the most recent brief makes clear the intent will be to apply the interpretation to the ADA and Rehabilitation Act more broadly.
Having to prove malicious intent in order to access basic accommodations will further gut the ADA/504 in an already hostile DOJ oversight. Does this building not have a ramp? Well, as long as they aren’t doing it to be mean! *shrug*….. - Executive Order, “Reinstating Common Sense Discipline in Schools” From the order: “The Federal Government will no longer tolerate known risks to children’s safety and well-being in the classroom that result from the application of school discipline based on discriminatory and unlawful ‘equity’ ideology.”
The White House seeks to roll back trauma-informed and anti-racist educational practices currently in place to address disparities in the biased application of disciplinary policy (e.g. children of color getting punished more frequently and harshly for the same behavior as white children.)
The removal of equitable discipline practices will be dangerous for children of color, disabled children, and especially those at the intersection of those identities. - Deaf and Disability Studies programs shutter while Gallaudet begins layoffs.
Across the country, deaf education TOD programs, and deaf/ disability cultural programs are being shut down. The deaf ed programs have likely lost funding due to cuts at the Dept of Ed’s Office of Special Education, while cultural “area” studies have been targeted by a variety of Trump’s anti-DEIA orders.
Deaf Education programs cut: University of Minnesota–Duluth, Utah State University. Deaf ed at Columbia University Teacher’s College has also been defunded through the Trump takeover there.
Deaf Studies: University of Maryland–College Park, University of Montevallo, University of Nebraska, Ithaca College.
Disability Studies: University of Toledo
ASL Interpreting Programs: Columbia College–Chicago, University of Texas–Houston
Gallaudet also announced layoffs on the executive team and comms office, while others took pay cuts. Gallaudet Pres. Cordano continues to downplay growing concerns about the future of the university without its DoED liaison. - Texas v. Becerra lawsuit continues. Despite recent “clarifications” from HHS about the how mention of gender dysphoria in Final Rule’s preamble is not legally binding, involved parties have not revoked their original filing, which explicitly asks for 504 to be declared unconstitutional (p 37-42).
- 504 protects disabled people’s rights in all spaces that receive federal funding, and would have major implications in conjunction with rescinding of ADA guidance, the uncertain future of DoEd, and a separate suit going before SCOTUS next week.
- A stay has been issued, and parties are now required to update every other month, with the next due June 21st.
- The FBI arrests a sitting judge, Attorney General Bondi threatens more. The FBI arrested WI judge Hannah Dugan on charges of obstruction. They say Dugan allowed an immigrant to use a side door typically only for the jury, in order to avoid detainment by ICE.
US Attorney General Pam Bondi promised that Dugan’s arrest is just the beginning. “We are sending a very strong message today: If you are harboring a fugitive, we don’t care who you are, if you are helping hide one, if you are giving a TdA member guns, anyone who is illegally in this country, we will come after you and we will prosecute you. We will find you.”
The judge was not giving anyone a gun. The immigrant in question had been at the courthouse due to a misdemeanor.
The arrest is a marked turn in the disintegration of Constitutional rule, ushering in an era of ideological-based arrests. - Do not comply in advance (good news). Judges issued a series of blows to Trump’s anti-DEIA agenda within the K-12 sector, with two judges blocking, and one postponing the implementation of various anti-equity policies within public school settings, calling them too vague, and unconstitutional.
The number of school districts and states standing up to the administration on this issue continues to grow, and under forceful pushback, the administration typically folds (see: Harvard). The federal government has never had control over individual states’ or districts’ curriculum choices. - Action: Share this info. Disability is often lost in mainstream coverage.
Call your Representative and continue to make noise about the HHS’s eugenic rhetoric and practices.
Call your Senator and tell them to take meaningful action against illegal deportations and ideological-based arrests.
Contact your school board and state’s education officials, and tell them not to comply with baseless anti-DEI directives. Tell your universities you value deaf and disability studies programs!
If your state is involved, contact your Attorney General and ask them to withdraw from Texas v. Beccera. Tell them you stand in solidarity with disabled people, and trans folks.
Consider how to move toward creative acts of mutual aid, and protest, including offline materials. Make flyers! Call out misinformation. Warn your neighbors in the presence of ICE. If able, donate or volunteer with your local food pantry or library.
Tag: Gallaudet
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Week 14 Update
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NEW: Former Gallaudet Employee Speaks Out Against “Deceitful, Fanciful Thinking” in University’s Response to DoEd Layoffs
The following post provides information specific to Gallaudet University, the world’s only liberal arts university exclusively for D/HH students, in the wake of the Department of Ed’s layoffs last week.
For a general overview of that news, click here. For more information and action items specific to Gallaudet University, click here.
For an ASL version of this material, see Amy Cohen Efron’s vlog below.Note- the author of the letter below is a source with knowledge of the federal government, writing on condition of anonymity:
I don’t usually comment on Gallaudet, but as a former employee of the university, this is too important to not discuss because of the university’s significance to the Deaf community. Someone sent me the message from Gallaudet’s president yesterday, which I read with consternation. The language used implies either sheer ignorance about the reality on the ground or, worse, an intentional misleading of the community as to what has happened with the Department of Education (ED) and its liaison for the special institutes, including Gallaudet.As a result, the community does not understand the facts or the seriousness of the situation, and the university administration risks creating further confusion and division among the community when it is crucial for the community to understand how to advocate most effectively for the preservation of Gallaudet and its future.
From the president’s message:
“The Department of Education has implemented significant layoffs, affecting nearly 50% of its workforce, including our liaison. While the Department of Education is required to assign a new liaison, it is unclear how and when this will happen. The Department of Education has confirmed that our funding is secured.” [Read/View full message here]
This message mischaracterizes what has happened and is blatantly disingenuous about how it can be fixed. Let’s walk through this:
1. OFFICE/POSITION ELIMINATED: The position of Director/Liaison of the Special Institutes is in the Office of Policy and Planning (OPP), within the Office of Special Education and Rehabilitative Services (OSERS). OPP was eliminated completely (see link for org chart). This means that the liaison position is gone … as in it no longer exists. A new liaison cannot be designated when the position does not exist anymore.
2. POSITION NOT TRANSFERRED: Reduction in force procedures allow for transfer of functions and make it clear that employees performing these functions “have the right to move with their work to another organization if the alternative is separation by RIF” (OPM guidance). There is no indication that the duties and functions of the liaison have been or will be transferred to another department or agency. All evidence indicates this position is fully eliminated with no plans for continuity of functions.
3. NO TRANSITION PLANNING: Because of attrition, deferred resignation, and VERA, numerous vacancies existed before the layoffs began (see org chart). With these preexisting vacancies, the vacancy rate at ED is effectively over 65%, not 50%; within OSERS’ Office of the Assistant Secretary, the only person left is the assistant secretary. On top of that, ED employees who took retirement were immediately put on leave March 11, and the layoffs were equally as abrupt. This means it would have been impossible to conduct any level of transition planning to ensure continuity of institutional knowledge and understanding of how to perform functions … precisely because the intention was to not have these positions anymore. If the liaison position is restored but the employee not reinstated, this lack of transition planning will hamper any new employee in being able to do the job effectively.
4. HIRING FREEZE: Even if the liaison position still existed, the administration has implemented a hiring freeze for all but immigration enforcement, national security, and public safety. In addition, the EO prohibits the creation of new positions. Without significant pressure on the administration, it is very unlikely an exception will be granted to hire someone into the restored liaison position.
5. LENGTHY HIRING PROCESS: Even if an exception is granted to hire someone into OSERS for the Secretary to designate (appoint) as the liaison, the federal hiring process is extremely long. It can take four months to a year to fill a vacancy—and four months is considered “speedy”! The escalating disruptions to human resources staffing and processes government-wide threaten to make this process even longer.
6. REEMPLOYMENT PRIORITY LIST REQUIREMENT: Assuming the layoffs were done in accordance with legal requirements for reduction in force, as described on OPM’s website, ED is required to give reemployment priority to anyone they laid off through RIF. Therefore, the person who was laid off when the liaison position was eliminated has priority to return to the position, making it disingenuous for Gallaudet to call for a new liaison to be appointed.
7. GAP IN FUNDING MECHANISM: While the continuing resolution does appropriate funding for Gallaudet, as the president’s message states, there is an additional critical step of obligating funds, which is how the funds land in Gallaudet’s bank account. Congress grants legal authorization to spend funds (appropriations), the authorized person signs the paperwork to spend the funds (obligations), and then the funds are disbursed to the recipient. In short, obligation is like opening a door to allow funds to go through. Generally, authority to obligate funds is given to the secretary of a department, who then can delegate that authority to a subordinate. The Secretary of Education likely delegated authority to the liaison, who would then have been trained and certified in obligating funding – i.e., the liaison signs the paperwork authorizing the funds to be disbursed to Gallaudet. Without that paperwork signed by an authorized person, ED’s financial office cannot release (i.e., disburse) the funding. Since the liaison position was eliminated, who has the authority to obligate the funding for Gallaudet?
8. FUTURE OF DEPT OF EDUCATION: The overarching issue the university administration misses is that the goal here is to dismantle and terminate the Department of Education. With ED gone, where will the liaison position reside?
With all these factors at play, for the university president to say all that needs to be done is for a new liaison to be assigned is beyond deceitful. It’s fanciful thinking that fails to grasp the full picture of what is happening.
It also demonstrates a clear lack of understanding of how the government works and the legal constraints in which it operates. The easiest, fastest, and legal route to fix this is for the liaison position to be restored at ED or its functions transferred to another department.
The Gallaudet administration needs to understand that restoration of the liaison position means reinstatement of the person laid off from the position—the focus needs to be on the position, not on replacing the person. Designating a “new” liaison, as they are calling for, would be an illegal action on the federal government’s part and likely would be challenged in court, resulting in further delays. In addition, reinstatements have been happening quickly across the federal government as the administration backtracks after finding out that certain positions are critical or required by law (example: National Nuclear Security Administration) or a judge orders reinstatements (example: probationary employees).
For the best interests of Gallaudet and its funding, the university administration needs to focus on advocating for the full restoration of the liaison position, at ED or another department, and reinstatement of the employee.
The Deaf and Gallaudet communities need to band together to (1) push the Gallaudet Board of Trustees and administration to acknowledge these facts and lobby—and sue, if necessary—for this restoration and reinstatement, and (2) write to senators and representatives to advocate.
*To contact your elected official about this issue, use the letter template available here.
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Action Item: Protect Deaf and Special Education!
1300 Department of Education employees were laid off last week, some of them illegally, including workers in the Office of Special Education and Rehabilitative Services (OSERS), who provide a variety of special education funding and programs, oversee IDEA, and fund and support special institutions like Gallaudet, NTID, the American Printing House for the Blind, Helen Keller National Center for the Blind, and more. Take action!
Two options:
- Write to your Representative in the House. Find your Representative here.
- Write to a Senator on the Health, Education, Labor and Pensions (HELP) Committee. Here is the full list of the committee. If your Senator serves, write them! If not, you can still choose a Senator to write to in their capacity on the committee, as long as you are honest about where you live. Here are some suggested contacts for the four Republicans most likely to stand up for special and deaf education:
- Senator Jon Husted–Husted has been an advocate for disability rights in Ohio in the past.
- Senator Rand Paul–Paul has a Deaf nephew, and has used ASL on the Senate floor.
- Senators Lisa Murkowski and Susan Collins–both are self-declared “moderates” who occasionally break with party line votes.
The template below can be tailored to contact a Representative or Senator, by mail or email– or one of each!
Dear [Senator or Representative + Last Name]:
[If writing your congressperson, or if your Senator serves on the HELP committee: “I am a constituent from zip code [insert yours]”].
OR
[If writing to a Senator on the HELP committee not from your state: “I am a resident of writing to you in your capacity on the HELP committee.”] I am writing to express my grave concern that Linda McMahon, President Trump, and the Department of Government Efficiency (DOGE) are taking steps to abolish the Department of Education and eliminate educational opportunities for millions of students across the country, especially this impact has on students who are deaf, hard of hearing, and deafblind. This includes the termination of over 1,300 workers at the Department of Education. Linda McMahon inappropriately included in this termination of the Liaison to the Special Institutions, who works in the Office of Special Education and Rehabilitative Services (OSERS).The Liaison to the Special Institutions position within the Department of Education is mandated by the law The Education of the Deaf Act (EDA) 20 U.S.C. 4356 Section 206 Liaison for Educational Programs. Through this law, Gallaudet University and the National Technical Institute for the Deaf (NTID) at the Rochester Institute of Technology (RIT) receive direct appropriations from Congress to provide education and employment services to individuals who are deaf, hard of hearing, and deafblind. The EDA designates the Liaison to serve between the Department and Gallaudet University, NTID, and other postsecondary educational programs for individuals who are deaf under the Individuals with Disabilities Education Act, the Rehabilitation Act of 1973, and other Federal or non-Federal agencies, institutions, or organizations involved with the education or rehabilitation of individuals who are deaf or hard of hearing. The law also stipulates that the person in this position must be from the deaf community.
Without the Liaison, the Department will be unable to fulfill its critical functions as mandated in the EDA. In order to keep operations at both Gallaudet and NTID continued without disruption, I ask that you take immediate action to have Linda McMahon correct her mistake and reinstate the employee who serves in this position.
Sincerely,
[Your name]
[Your Contact information]