- 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: DEIA
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Week 14 Update
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Breaking: Department of Justice Begins Rollback of ADA
Yesterday the Department of Justice began removing guidance related to the Americans with Disabilities Act (ADA), the law that protects disabled people’s rights to access and accommodations in public.
While the law itself remains on the books, the definition of legal “access” is developed by guidance from the US Access Board. The Board, comprised of at least half disabled people, is supposed to meet annually, but their meeting was cancelled in January. Now the law is being hollowed out by the DOJ.The DOJ is using a January Executive Order aimed at “lowering the cost of living” as the justification for the rollback.
That accommodating disabled people is too expensive is age-old rhetoric favored by eugenicists and Nazis, and has been used to justify segregation, institutionalization, neglect, forced sterilization, and murder of disabled people here and abroad.So far, 11 guidance documents have been removed, with protections ranging from self-service gas stations, customer communication, hotel accessibility, general public-facing businesses, and several pandemic-era additions. (Links are to archived content; pages have since been removed.)
This is an ongoing story.
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Resources: Tracking Changes at the U.S. Department of Education and State Levels
The US Department of Education is an essential source of funding and oversight for all US students, but particularly for those with disabilities.
If you want more information about the functions of DoED and recent attacks, visit our explainer here. For a flyer with a QR code linking back to that information, go here.
Or, keep up to date on all the changes at DoED (inclusive of, but not limited to those affecting disabled people) at this spreadsheet, courtesy the volunteer Save Public Education. They’re currently in the process of building the website departmentofedtracker.com, but for now, the spreadsheet remains up-to-date!
Click on the image to view the Google Doc
ID: Screenshot of Google Sheets titled “US Dept of Education Updates.”
Resource: State-Level Proposals and Policies Affecting Education
States legislatures are capitalizing on ableist and anti-education sentiments in the White House to make their own attacks on local systems.
Use Fighting for my Voice’s Policy Change Tracker to read the text of state bills, explainers, and suggestions for action items. -
Week 2: What Happened?
ID: A CDI signs the below information in ASL with slides in the background presenting that information in text.
- Some ASL interpreters and accommodations divisions were fired in Anti-DEIA sweeps. The White House Press Office interpreter is gone. Providers housed in DEIA divisions were laid off, despite the violation of the Rehabilitation Act of 1973. Since it’s illegal, departments are being told to reverse course on this, with some complying and some not. Trump’s previous administration was sued over failure to provide interpreters at press conferences and lost, but has again removed the interpreter from briefings.
- Some resources regarding disabled children’s rights have been deleted from the Dept of Ed’s website. FAQs about Section 504 and other resources went missing during Musk’s DOGE external server takeover, which also seems responsible for a spate of press releases and Facebook posts not in keeping with DoEd’s materials. Due to inconsistencies, verify information with multiple sources when possible.
- Funding freeze of federal payment system creates chaos. A judge blocked the freeze but some programs are still being targeted. Contact elected officials to ensure a new head of OMB recognizes that appropriation powers belong to Congress, not the President. Many essential health, medical and research programs remain frozen from previous orders. Investigations into potential “DEIA” programs continue.
- Current Programs “Under Review” for potential defunding under anti-DEIA orders.
Deaf and hard of hearing-specific programs:
Training Interpreters for Individuals who are Deaf and Deaf-Blind (DoED), Research Related to Deafness and Communication Disorders (HHS), National Deaf Services (DOJ)
Special Education-related programs Research in Special Ed, Special Ed Technology, Media, and Materials for Individuals with Disabilities, Special Ed Grants for Infants and Families, Special Ed Grants to States, Special Ed Parent Info Centers, Special Ed Preschool Grants, Special Ed Studies and Evaluations; Special Ed Technical Assistance and Dissemination to Improve Services and Results for Children w/ Disabilities; Special Ed Technical Assistance on State Data Collection; Special Ed Personnel Development to Improve Services for Children with Disabilities; Special Olympics Education Programs; State Personnel Development (DoED)
A searchable spreadsheet of all programs and grants under review is available from Politico here. - RFK Jr.’s Nomination Hearing for HHS Secretary begins. RFK supports a variety of racist, ableist and scientifically inaccurate conspiracy theories. His stances on vaccination put the immunocompromised, and everyone, at risk. He has proposed sending folks to “wellness camps” in lieu of taking ADHD medication, boosts hateful rhetoric about autistic people, and holds many other eugenicist beliefs.
- Donald Trump blames DC plane crash on disabled FAA workers and DEIA. In a press conference, Trump quickly capitalized on the tragedy to deride the FAAs DEI hiring initiatives, specifically listing off various disabilities, then insinuating that disabled and/or BIPOC people aren’t smart enough to do Air Traffic Control. Trump’s first administration had originally been behind the 2019 program to hire disabled people at the FAA. Thursday, he issued an official memorandum ordering the removal of DEI from the aviation sector.
There is no evidence for the President’s claims re: this or any crash. Physical requirements for ATC employees are stringent, and the FAA has long been understaffed. Before the crash, Trump had gutted a key aviation safety committee, and Elon forced the FAA chief to quit over a personal vendetta for having been fined at SpaceX. - Executive Order: “Ending Radical Indoctrination in K-12 schooling” This order threatens to defund schools for a variety of perceived “violations” including respecting trans and nonbinary students, and teaching about racism and honest US history, which it labels “discriminatory equity ideology.” This is defined as “an ideology that treats individuals as members of preferred or disfavored groups, rather than as individuals, and minimizes agency, merit and capability.”
The Dept. of Ed has never dictated curriculum or content; this is left to states and districts. Defunding schools hurts all students, especially the marginalized, and preventing teachers from discussing discrimination only perpetuates it. The emphasis on “merit” and “capability” given recent-disability rhetoric is also concerning here. - Executive Order: “Expanding Educational Freedom and Opportunity for Families” This order directs a variety of federal agencies to prioritize ways to expand “school choice” and voucher programs at the federal level.
Sending money meant for public schools to private and religious ones is of concern for disabled students, because private schools are not required to accommodate, or even accept, disabled students, leaving them stranded at underfunded schools and/or with limited support and no recourse.
What to Do:
- Share this info. Disability is often lost in mainstream coverage.
- Write/call your congress people and demand that they continue fighting for their duty to make appropriations. Advocate for programs you value. It is taxpayer money, not an executive decision.
- Write your senator to vote NO on confirming RFK Jr.
- Contact your state legislature and school board and ask that they not comply in advance with voucher expansion or directives for indoctrination. An EO cannot control state funds or educational content areas–states and districts decide their curriculums.
- #ProtectADA on social media for community sharing, news, letter templates, and more
Tools and Resources:
- Some ASL interpreters and accommodations divisions were fired in Anti-DEIA sweeps. The White House Press Office interpreter is gone. Providers housed in DEIA divisions were laid off, despite the violation of the Rehabilitation Act of 1973. Since it’s illegal, departments are being told to reverse course on this, with some complying and some not. Trump’s previous administration was sued over failure to provide interpreters at press conferences and lost, but has again removed the interpreter from briefings.