- 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: autism
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Week 14 Update
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Week 13 Updates
- White House asks Congress to Eliminate Head Start Funding. The current budget draft eliminates funding for Head Start, which provides early education, meals, and health screenings for pre-k kids. The elimination of Head Start was a stated goal of Project 2025.
Head Start outcomes are extremely successful, showing benefits for children in early literacy, social-emotional skills, health and dental improvements, early intervention for disabilities, and a >90% decrease in the need for family separation and foster care.
Many preschools–which include both public and private programs–who receive the funding were already struggling due to earlier federal freezes and staffing cuts. - US Citizen arrested on ICE hold, while White House flouts SCOTUS rulings and wants expansion of camps for “homegrowns.” Trump met with the President of El Salvador, and the two congratulated themselves on the imprisonment of asylum seekers and legal US residents. Trump remarked that US citizen “homegrown” prisoners would be next.
Despite various judicial rulings, including a unanimous SCOTUS ruling that the administration should facilitate the return of Kilmar Abrego-Garcia, the White House has continued to organize more deportations and posted on X that Garcia will “never return.”
A US-born man was also imprisoned yesterday in Florida due to an ICE hold, even though he presented an authentic US birth certificate. He has since been released.
If the Executive branch does not accept the rulings of the judicial branch, rule of law ceases to exist in the US, paving the way for any and all “undesirables” to be sent to illegal detainment camps. - RFK spouts misinformation and hatred about autistic people. Autistic and disabled organizers, alongside parents and teachers of autistic children were alarmed at RFK Jr’s hateful comments on autism and his department’s plan to find the “environmental causes” of autism by September. His quote: “Autism destroys families, and more importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this, These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted…. We have to recognize we are doing this to our children, and we need to put an end to it.”
- (RFK Cont’d) Current studies show that nearly 80% of autism can be attributed to genetic factors. Recent increases in diagnosis and visibility are due to the reclassification of autism as a spectrum disorder, better screening, diagnostic, and support tools, and in-community living over institutionalization.
RFK’s remarks rang false for many autistic people and their families who live full and meaningful lives (including autistic adults who pay taxes).
Even in the case of high support needs individuals, no human’s value should be calculated by their monetary input into society. This is a direct regurgitation of eugenic rhetoric used throughout history to forcibly sterilize and murder disabled people, notably the Germans’ labeling of “useless eaters” as “drain” on society in the lead-up to murdering 300,000+ disabled people. - HHS fallout reveals loss of Advisory Committee on Heritable Diseases in Newborns and Children (ACHDNC). The latest HHS cuts include ACHDNC, which helped identify which genetic screenings should be available for newborns and children, and standardize the process across all states.
Without federal guidance and funding, states may or may not provide screenings, meaning that there will be delays and missed opportunities for early intervention in children with those conditions. Many of the conditions are rare, so families might not even know what to look for or ask their doctors about.
The move is at odds with RFK’s professed desire to ameliorate “children’s suffering” in his remarks on autism. - More HHS fallout. In addition to departments and programs noted in previous weeks, others continue to be endangered by the vast staffing cuts enacted across the department.
The FDA announced yesterday their plan to remove their food safety inspection programs due staffing constraints. The risk of foodborne illness hurts everyone, but can be deadly for children, the elderly, the chronically ill, immunocompromised, and pregnant people. Certain foodborne illness, like listeria, also cause stillbirth.
Due to the $11 billion in CDC funding cuts, many long-COVID education and research projects at the state-level have been forced to make drastic cuts or close completely. Researchers believe approximately 6 in 100 people develop a post-covid medical condition. - HHS issues “clarification” regarding gender dysphoria in Section 504’s Final Rule. RFK Jr. issued a clarification this week, noting that the mention of gender dysphoria in the preamble of Final Rule is not actually an enforceable part of Section 504, as opponents of the suit have pointed out since the initial filing of Texas v. Becerra.
However, precedent has been established for gender dysphoria being a protected condition under the ADA via other recent court decisions like Williams v. Kincaid.
It’s unclear what this statement regarding Final Rule will mean for Texas v. Becerra, which remains ongoing. - Texas v. Becerra lawsuit continues. Attorneys General continue to use transphobic rhetoric to attack Final Rule and Section 504, despite recent statements from HHS.
Participants continue to say they do not want to dismantle disabled people’s rights, but have not revoked the 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, but could have major implications in conjunction with rescinding of ADA guidance, and the uncertain future of DoEd. The next update is due in the coming days. - Local: Utah’s SB199 violates the ADA, due process. Late last month the Governor of Utah signed SB199, setting up a separate guardianship process for adults with “severe” disabilities.
Guardianship protocol already exists in UT, but the new set-up allows people to circumvent due process if a doctor declares a person’s disability “severe.”
Some disabled people benefit from guardianship arrangements, but all people have a right to due process, and the categorization of “severe” is vague.
The ACLU is currently attempting to block the bill as a violation of one’s right to due process and the ADA. - Do not comply in advance (good news). Due to pending legal action over McMahon’s DoEd issued directive to withhold funding from schools pending receipt of their anti-DEI loyalty pledge, a judge ordered that schools do not need to sign any certifications until at least April 24, after the legality of the pledge is assessed. Previously, the directive required school leadership to sign within 10 days.
So far VT, MA, CT, NY DE, PA, MI, WI, IL, MN, CO, UT, OR, WA, CA, officials have declined to sign, while other states have declared their intent to sign or are still in review. See the full map here.
- White House asks Congress to Eliminate Head Start Funding. The current budget draft eliminates funding for Head Start, which provides early education, meals, and health screenings for pre-k kids. The elimination of Head Start was a stated goal of Project 2025.