- RFK Jr. and Trump deliver multiple anti-scientific rants about Tylenol and vaccines in connection to autism. After promising to find the “cause” for autism by September, HHS’s RFK Jr. delivered a series of unhinged press conferences about the dangers of Tylenol. He cited a small and since debunked study that found a slight correlation between Tylenol-use during pregnancy and autism rates of children.
The study was later thrown out— doctors noted an already known risk factor to fetal development is the activation of the maternal immune system. Given that pregnant women’s Tylenol use would overlap with illness, it would be difficult to parse these variables. Later, a much larger sibling study found no correlation between Tylenol use and autism rates.
The latest rants are dangerous and cruel, given that Tylenol is one of the only approved medications for pain and fever relief during pregnancy. Fever during pregnancy is another risk factor for birth defects and other fetal harm. They’re also a grift– one supposed “cure” for the reversal of autism RFK suggests is a B vitamin-derivative supplement, a popular version that comes from a competitor to Tylenol’s parent company, iHerb, of which Dr. Oz is an investor. Oz had previously said he would divest from the company when appointed to his Medicare position, but whether he did is unclear. The FDA reasserted on Twitter/X that only a prescription form of the product is recommended for certain patients following a blood test, but that hasn’t stopped the explosion of promotion and sales across MAHA platforms.
Trump and MAHA also took aim at the administration of Hepatitis B shots, as well as Vitamin K shots, to infants, suggesting the former should be held off until tweendom due to the sexually transmitted nature of the disease. However, victims of permanent liver damage from Hepatitis B are overwhelmingly infants, and Vitamin K prevents brain hemorrhage and death in newborns. Vitamin K does not cross the placenta or into breastmilk efficiently; death from Vitamin K deficiency bleeding is 81 times less likely in those infants who receive the shot. - Republicans leave DC to avoid negotiation on healthcare subsidies, triggering government shutdown. Congress was set to negotiate on a budget bill, but Speaker Johnson sent the Republicans home instead. Democrats had said they would not pass the bill as is, requesting that healthcare subsidies be extended to offset rising costs. Healthcare subsidies not only help people to purchase insurance in the marketplace, but this infusion of money into the system protects everyone from the closure of clinics and hospitals who rely on Medicaid/care and insurance dollars.
The shutdown furloughs many government workers, with others performing essential functions without pay. Experts worry that a prolonged shutdown could also harm the distribution of life-saving services like WIC supplemental nutrition. The last government shutdown was in 2018, also under Trump. - Despite ACIP’s recommendations, several states are still blocking access to covid vaccines without a prescription. Missouri, Georgia, and Louisiana are still preventing people from getting covid vaccines without a prescription, despite recommendations out of the CDC’s immunization committee.
Experts speculate this is because no CDC director has signed off on the recommendations, since Trump fired the CDC director. However, none of the state laws stipulate a CDC signature must be in place for the recommendations to be adopted. - Congress fails to pass extensions–Medicare’s coverage for telehealth speech therapy and audiology services has ended. These services were essential for families especially in rural areas where they may otherwise face multi-hour drives and long waitlists.
- The First Circuit Court of Appeals rules that the Department of Education is allowed to fire half its’ Civil Rights Department staff. The Office of Civil Rights (OCR) inside DoED exists specifically to protect students facing discrimination or those who have experienced sexual assault, and the process of filing a complaint can, in many places, already take years.
Halving the staff essentially removes consequences for perpetrators of racism, ableism, sexism, sexual abuse, and the intersections thereof, and will be devastating to the equitable education and safety of marginalized students. - Department of Education partners with Turning Point, Moms for Liberty to create new “patriotic” history and civics curriculum.
DoEd announced an initiative to create a new history and civics curriculum lead by far-right extremist organizations. The curriculum will likely continue propagate racist erasures of US history and anti-DEIA book bans, two pet projects of the involved groups.
Previously, DoEd was not involved in creating specific curriculum–this decision was left up to individual states and districts.
Public comment on the initiative is now open until October 17. - Good News: Some mental health grants for schools have been restored. McMahon’s Department of Education had previously cut a billion dollars worth of grants geared toward student mental health, but, due to backlash, recently restored $270 million. The restored grants focus on school psychologists, only, and leave out counselors and social workers, but they do serve as proof that backlash and public comment can still be effective.
What to Do:
Get your vaccinations up to date as soon as possible, and ask your state to join a state-level public health collaborative if they haven’t yet.
Hit the streets if you are able. March, attend a town hall, school board meeting, or other local action. Go, but don’t RSVP, to a protest! Consider purchasing a reusable respirator (gas mask) if attending a mass protest, due to recent escalations in use of tear gas and other “less lethal” force at actions.
Protect your neighbors. Warn and record in the presence of ICE. Push your local officials not to collaborate. Write to Apple to tell them their blocking of the ICE Block app is unacceptable capitulation.
Call your representatives and especially your local officials to ensure special education gaps are being filled in your district.
Leave a public comment saying no to forced Turning Point history curriculum in public schools.
Donate to your local food pantry, library, clinics, cash bail funds, or other mutual aid if you can. Or volunteer your time.
Make a plan to vote in upcoming local elections, in person when possible. Down ballot elections matter more than ever.
Move to (more) secure encrypted apps when possible. Think about ways to spread information offline. Make flyers and stickers. Make art.
Category: Medicine
Information about medical rights.
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Week 36 + 37 Updates
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Weeks 34+35
- Brian Kilmeade of Fox & Friends calls for the mass murder of unhoused people. The discussion, about how to handle growing populations of unhoused people, especially those who are mentally ill, Kilmeade said we should “just kill them” using “involuntary lethal injection.” Unhoused people often have a disability or mental illness, and Kilmeade spoke emphatically about his idea to kill them all in the context of discussion about a murder committed by an unhoused man in North Carolina.
He later apologized, but kept his job.
(In contrast, Karen Attiah of the Washington Post was fired for her social media comments on the rhetoric of the late Charlie Kirk, and Jimmy Kimmel was removed from the air “indefinitely” for criticizing MAGA response to Kirk’s death. In the latter, the head of the FCC got directly involved by pressuring the network to remove Kimmel, then attempting to extort a “meaningful personal donation” to far-right organizations should he seek to return on-air. ) - The Trump administration continues to push arguments that IUDs and birth control pills are actually abortions. The administration used the argument as a pretext to cancel a USAID family planning program and destroy millions in birth control, and has floated attempts to employ reasoning domestically. Pro-choice advocates have warned about this as an an administrative goal since the overturn of Roe v. Wade.
- The last of the NIH’s communications and policy specialists are being eliminated. These are the experts who take highly scientific and technical knowledge and make sure it is transparent and understandable for healthcare workers and the general public. Without access to the NIH’s vast work in medical research, RFK Jr. and other anti-science leaders will be able to more easily make and spread false claims, and subsequent policy changes.
- The Department of Ed makes millions in Special Ed cuts, citing anti-DEIA. The Office of Special Education Programs (OSEP) pulled 25 grants from IDEA-related programs worth nearly $15 million. The Rehabilitation Services Office also canceled 9 disability related grants. The grants supported special ed teacher training, community parent resource centers, brail and interpreter training, and services for DeafBlind children and adults.
Programs across 16 states will be impacted, and the cuts begin October 1st. In a letter sent to the affected programs, the administration said the cuts were made with an anti-DEIA motivation, because the programs don’t “align with Administration’s policy of prioritizing merit, fairness, and excellence in education.” - Covid vaccines live to see another year based on Advisory Committee on Immunization Practices (ACIP)’s latest vote. Though RFK had attempted to fill the committee with antivaxxers and covid deniers, the group ultimately voted 7-6 to allow people to make their own choices with their physicians about whether they would like the the covid vaccine. Due to these recommendations, vaccines should be available without a prescription in all 50 states.
The ACIP still needs to weigh in on other concerning vaccine related topics, specifically an attempt to delay the administration of the MMRV and Hepatitis B vaccines to babies. Hepatitis B had previously been considered eradicated in child populations thanks to wide vaccine uptake. - States form their own health coalitions, creative workarounds, in light of anti-scientific recommendations from HHS. As the HHS under RFK continues to create barriers to access for vaccines and other preventative care, states who previously relied on CDC recommendations, many of whom had laws tethering state guidance to the CDC, have taken matters into their own hands.
The West Coast Health Alliance (Washington, California, Oregon, and Hawaii) and the Northeast Public Health Collaborative (Pennsylvania, Delaware, New York, New Jersey, Massachusetts, Connecticut, Maine, Rhode Island, Maryland and Vermont) have been formed to issue evidence-based public health recommendations, remove barriers to vaccine access, and collaborate on emergency preparedness in the absence of organizations like FEMA.
Meanwhile, Michigan public health officials had floated declaring “not having the latest covid booster” an underlying health condition, in order to make it easier for all those who want it to obtain the vaccine.
Large groups of insurance companies have also already committed to continuing to pay for vaccination regardless of current HHS recommendations. - Access to speech and hearing services via telehealth to end this month under Medicare. Under current Medicare provisions, access to speech therapy and audiology services via telehealth will end on September 30th, unless Congress acts to extend them. HR 5081 and 1614 are two possible bills that could extend the services.
Telehealth speech therapy and audiology services are especially important for early intervention in rural areas that wouldn’t otherwise have access to specialists. - Administration declares “Antifa” and trans people terror threats. Trump took to social media this week to announce that he was labeling antifa a “major terrorist organization,” while the FBI declared trans people a “nihilistic violent extremist” threat group.
Antifa, an abbreviation for anti-fascist, is a general ideology, and has no official organization or hierarchy. Further, the president does not have legal authority to designate terror groups.
Trans people are a very small percentage of the population and there is no evidence to suggest they are more violent than cis people; however, they are statistically much more likely to be victims of violent crime.
The move by the administration to label those they disagree with as “terrorists” should concern everyone interested in free speech and bodily autonomy, especially in the wake of a recent attempt by the GOP to allow Rubio’s State Department the ability to strip passports from citizens belonging to “terror” groups. (The bill has been pulled for now after backlash.) - US democratic status in peril as state media censorship and ICE-related deaths spike. We highly recommend this breakdown of the ten steps required to transfer from a democratic to authoritarian form of government (2 min video.)
What to do:
Get your vaccinations up to date as soon as possible, and ask your state to join a state-level public health collaborative if they haven’t yet. If you live in Florida, contact your state representatives and tell them not to remove vaccine guidelines for schoolchildren. Despite rhetoric, state law about this is still in effect.Hit the streets if you are able. March, attend a town hall, school board meeting, or other local action. Don’t RSVP to a protest! Consider purchasing a reusable respirator (gas mask) if attending a mass protest, due to recent escalations in use of tear gas and other “less lethal” force at actions.
Protect your neighbors. Warn and record in the presence of ICE. Push your local officials not to collaborate.
Call your representatives, but also your local officials to ensure special education gaps are being filled in your district.Donate to your local food pantry, library, clinics, cash bail funds, or other mutual aid if you can. Or volunteer your time.
Move to (more) secure encrypted apps when possible. Think about ways to spread information offline. Make flyers and stickers. Make art.
- Brian Kilmeade of Fox & Friends calls for the mass murder of unhoused people. The discussion, about how to handle growing populations of unhoused people, especially those who are mentally ill, Kilmeade said we should “just kill them” using “involuntary lethal injection.” Unhoused people often have a disability or mental illness, and Kilmeade spoke emphatically about his idea to kill them all in the context of discussion about a murder committed by an unhoused man in North Carolina.
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Week 33 Updates
- Chaos hits pharmacies as CDC’s delayed approval of covid vax causes confusion, barriers to access. Covid surged to the highest levels in the US since the 2021 Delta variant–in response, CDC stopped tracking the data.
Meanwhile, vaccine rollout was stymied as many states have regulations requiring CDC approval for a vaccine before it can be administered by a pharmacist. The board, now populated with antivaxxer friends of RFK, is expected to meet later in the month.
At first, the vaccine was completely unavailable in at least 16 states, with others requiring a prescription. Several states have since revised regulations, allowing other the recommendations of other medical bodies to serve in place of the largely absent CDC. As of Sunday, vaccine access is legally as follows, though individual access may be stricter due to confusion and/or ideological refusals.
ID: map of the US with states in green (available) green stripe (newly available due to regulations circumventing CDC) yellow (need RX) and purple (unavailable)
Source: https://www.instagram.com/p/DORYoaUjhBM/
2. RFK revives bogus claim that Tylenol in pregnancy is linked to autism. After receiving blowback for causing vaccine-related turmoil and a conspiracy-addled testimony before Congress that had many leaders and his own family calling for his resignation, RFK Jr. is returning his attention to attacking autistic folks and their families, now through the reintroduction of a fake link between Tylenol consumption during pregnancy to autism rates.
RFK and HHS had previously said they would announce the “cause” of autism in September, and sources at the HHS say the announcement will involve Tylenol.
The vast majority of studies have shown no link between Tylenol consumption with autism diagnoses. One study the administration is focusing on showed a very small increase in incidences; however, that study later overturned its findings using sibling analysis, finding no link.
In addition to being false, the accusation places blame and will likely cause undue fear on pregnant people who use the only pregnancy-approved medication for pain. Multiple evidence-based scientific studies have determined that autism is overwhelmingly genetic.3. Florida Surgeon General announces plans to end all vaccine mandates for schoolchildren, as cases of whooping cough and measles rise. Harvard-educated Dr. Ladapo said that the move was “not actually a scientific debate” but an ideological one aimed at appealing to “parent’s interest”.
Ladopo, a longtime antivaxxer, went on to compare vaccine mandates to slavery. Ladopo doesn’t have unilateral control over the mandates, so it will be on state legislature to fully eradicate them.Multiple cases of tuberculosis surface in and around Portland, Maine, as well as in several other states. RFK Jr. ordered CDC officials to hide the data. 28 cases have been reported in Maine since July, stemming from multiple sources. Some are believed to be linked to the consumption of raw milk, while other cases have person-to-person or unknown origin.
Known as the world’s deadliest respiratory disease, tuberculosis can be latent for years before becoming active, so the uptick in cases is generally considered a marker of the declining health of a population weakened by other conditions (covid, inconsistent access to healthcare, decreased vaccine uptake).
DOGE’s decision to end USAID will likely have huge long-term effects on tuberculosis cases in the US, and a 28-32% uptick of the disease globally, as people visit or immigrate from other countries with higher infection rates (many asymptomatic at the time or not knowing they are infected at all). Previously, USAID programs helped with cost and distribution of the months’ long antibiotic regimen required to cure the disease.
Trump attempts to rename the Department of Defense and announces he will send troops to Chicago via ill-conceived Vietnam War movie meme. This week Trump announced that he will rename the Department of Defense to “The Department of War” (a move he is legally not allowed to make unilaterally), then immediately released meme misinterpreting the Vietnam War film Apocalypse Now to announce the impending deployment of troops to the city of Chicago (a move he is legally not allowed to make unilaterally). He also mentioned Baltimore and New Orleans as future targets.
As in DC, a deployment of the National Guard or other military occupation against civilians is dangerous for people, particularly the unhoused, immigrants, disabled people, and people of color. It also functions as a superspreading event, sending covid infection rates surging.
The Governor of IL and mayor of Chicago have repeatedly said troops are not necessary or welcome in the city, which is experiencing lower than average crime rates at this time.
What to do:Get vaccinated if you can, as soon as possible!
If you live in Florida, contact your state representatives and tell them not to remove vaccine guidelines for schoolchildren.
Call your state officials and ask them how they can facilitate access to covid vaccines in lieu of federal leadership, especially if the CDC refuses to approve the vaccine.Hit the streets if you are able. March, attend a town hall, school board meeting, or other local action.
Protect your neighbors. Warn and record in the presence of ICE. Push your local officials not to collaborate.
Donate to your local food pantry, library, clinics, cash bail funds, or other mutual aid if you can. Or volunteer your time.
Think about ways to spread information offline. Make flyers and stickers. Make art.
- Chaos hits pharmacies as CDC’s delayed approval of covid vax causes confusion, barriers to access. Covid surged to the highest levels in the US since the 2021 Delta variant–in response, CDC stopped tracking the data.
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Week 32 Updates
1. RFK Jr’s eugenic rampage continues to burn through the Department of Health and Human Services.
RFK fired Susan Moneraz, Director of the Centers for Disease Control, throwing an already tumultuous climate at the institution in to chaos, and prompting several other high-level resignations at the institution.Dr. Demetre Daskalakis, one of the scientists who resigned, raised alarms as he left about RFK’s love of eugenics and frequent discussion of “superior genetics.” Eugenics, a pseudoscientific school of thought tied to white supremacist ideas about genetic and racial “purity” was behind the US’s forced sterilization and anti-anti-miscegenation laws in the early 20th century. In Germany, the Nazi’s took eugenic ideology to it’s extreme conclusions via the mass murder of Jewish people, as well as Roma, disabled people, LGBTQ people, “race traitors” and others they deemed undesirable.
Daskalakis said RFK applied eugenic theory to internal discussions about bird flu, which he proposed should be allowed to “burn through” chickens, and then children and adults, in order to propagate a “stronger species.” The CDC had ended their emergency bird flu response at RFK’s order last month.
2. RFK and antivax appointees restrict access to covid vaccines, despite saying people would have a choice.
Simultaneously, the FDA placed restrictions on who is allowed to receive this year’s covid vaccines–limiting them to “high-risk” groups or those over 65. CVS and Walgreens in more than 16 states are refusing to administer vaccinations while awaiting the CDC’s vaccine committee approval, while others are requiring prescriptions.Over the past months, RFK has replaced nearly all panel members with known antivaxxers, some of whom have spoken explicitly against covid vaccines and mRNA technology. The panel meeting, which typically occurs in the summer, it has been postponed for unknown reasons to mid-September, with some concern that its antivax members have no intention of holding the meeting.
While vaccines may be accessible in other locations, it’s important to note that CVS, the largest pharmacy chain in the country, and often the only option in rural areas. The company also owns Aetna insurance and forces those clients to receive care at only CVS.
3. CDC cuts back foodborne illness surveillance program. The FoodNet program previously required surveillance from eight pathogens to two. They will continue monitoring for e. coli and salmonella, but will no longer require monitoring for campylobacter, cyclospora, listeria, shigella, vibirio and yersinia. Foodborne illnesses are particularly harmful to disabled and immunocompromised people, as well as children and the elderly. In particular, listeria is known to cause stillbirth when a pregnant person contracts the bacteria.4. Pediatric brain tumor research cut. The National Cancer Institute has announced it will no longer fund the work of the Pediatric Brain Tumor Consortium, a network of physicians and researchers who have been running clinical trials for patients with childhood brain cancer not responding to other treatments, for over 25 years.
In addition to the loss of groundbreaking treatments for terminally ill children, researchers are mourning the loss of the network that allows them collaborate across institutions, which has led to better outcomes for patents and further scientific innovations over the life of the project.5. The Trump Administration is contracting with private AI companies, using AI to determine whether certain procedures should be covered by Medicare. In addition to the many, many concerns about the efficacy of AI to perform basic functions of preapproval, like reading and drawing logical conclusions, and not making things up, the company will also have incentive to reject–they will receive a portion of the profits for every rejected claim.
6. AI chatbots continue to fuel mental health crises, resulting in multiple deaths by suicide. At least one AI company has said they will combat the problem by flagging chat results for the police, which may cause more danger for those in crisis. AI chatbots have been at the center of a string of mental health crises, including goading suicidal ideation and providing feedback on how best to carry out self-harm (also here and here), a conversation about avoiding salt that led to one man giving himself bromine poisoning, and a Connecticut man who killed his mother, then himself after encouragement from an LLM.
In response, OpenAI has said they have begun scanning ChatGPT conversations in order to report content to the police. The company has said this will not result in wellness checks, so the function of the reporting is unclear. Many murders by police begin as encounters with a person experiencing a mental health crisis or suicidal behaviors–at least 356 such individuals were killed by police between 2017-2020.What to do:
Call your state officials and ask them how they can facilitate access to covid vaccines in lieu of federal leadership. For example, Illinois is exploring how to purchase its own contracts with vaccine manufacturers, while a group of mid-Atlantic and New England states met this week to consider issuing their own recommendations apart from the CDC.
If you have access, please get a covid and flu vaccine to help protect immunocompromised people in your community.Hit the streets if you are able. March, attend a town hall, school board meeting, or other local action.
Protect your neighbors. Warn and record in the presence of ICE. Push your local officials not to collaborate.
Donate to your local food pantry, library, clinics, cash bail funds, or other mutual aid if you can. Or volunteer your time.
Think about ways to spread information offline. Make flyers and stickers. Make art.
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Week 29 Update
- Executive Order: Improving Oversight of Federal Grantmaking. Trump signed an executive order this week that gives the executive branch approval control over research grants disbursed by the NHS, NIH, and other agencies.
This will add an unnecessary extra layer of bureaucracy and censorship, in which scientists will have to defend their projects to people have no scientific knowledge, rather than a peer-review process by fellow experts.
The order also puts grants that work in fields that focus on or support marginalized populations at risk due to the administration’s anti-DEIA rhetoric–research that mentions disability, examines race or ethnicity-based prevalence of specific diseases or conditions, highlights race, gender, or class disparities or other biases, will be eliminated on the basis of ideological warfare rather than scientific value. - RFK Jr. cancels 22 programs, $500 million in vaccine funding. RFK Jr. announced the revoking of $500 million dollars in funding, specifically for mRNA projects. RFK has spoken about his distrust for mRNA technology re: the covid vaccine, but the methodology is actually the latest frontier in a wide variety of vaccine and medical tech, including in customizable cancer treatments.
In the same week, the FDA also floated plans not to renew approval for the Pfizer pediatric 0-5 covid vaccine, the only one for this age group.
Misinformation kills in more than one way: Shortly after RFK’s anti-mRNA speech, Patrick White opened fired on CDC headquarters in Atlanta, believing himself to be injured by a covid vaccine. White and a police officer were killed. - Good news: Deaf Mongolian Man Released from ICE Detention. Avirmed, a Deaf immigrant who turned himself in at the California-Mexican border to seek asylum, had been detained by ICE for months, after DHS failed to process his written request for asylum, perform the credible fear screening, or provide him a Mongolian Sign Language interpreter. At one point they attempted to communicate via Google Translate, getting basic case facts wrong. He also had no accessible way to contact his sister, who is a resident of Virginia.
On July 9, a judge ordered that he be provided with an interpreter. Once communication was established, he was able to present his case and has since been released. He is currently living with his sister. Avirmed is just another of many disabled people held illegally by ICE in squalid conditions without accommodations or information. - Big Pharma joins race to profit off measles as cases surge to 33-year high. With cases at a 33-year high, pharmaceutical companies are hoping for “investor interest” on a potential measles cure. Previously broad uptake of the vaccine had eradicated the disease in the US.
Several pharmaceutical companies are working on synthetic monoclonal antibodies that could be used to treat the infected, who are mostly unvaccinated. (In contrast, a vaccine teaches the body to make its own antibodies upon contact with the disease so the person can avoid serious illness).
In the Wellness arena, grifters continue to make money on the outbreak, though with no guardrails–one popular recommendation of large doses of vitamin A left several poisoned and hospitalized with overdoses.
The original anti-MMR rhetoric was also a grift–Wakefield wrote a fraudulent paper linking MMR and autism so he could sell his own version of the vaccine. Subsequent studies with sample sizes totaling more than half a million children worldwide have disproven any link between vaccines and autism, a developmental difference present from birth and believed to be largely genetic. - They’re messing with the elections, continued. The Texas legislature continues its pursuit of illegal redistricting after Trump asked the state to find him five more red seats. Texas Dems fled the state to break quorum and are now threatened with arrest and bomb threats. (If you have a Democratic rep. or Senator, tell them to support their Texas colleagues!)
Meanwhile, the Supreme Court has taken up Callais v. Landry, a Louisiana-based redistricting case that is poised to destroy Section 2 of the Voting Rights Act.
Trump also asked for a new mid-season census in order to remove noncitizens from the data. Legal precedent has already decided that noncitizens should be counted during census-taking, which is about overall resource distribution per capita, not citizenship status. Voting rights advocates worry this is an attempt to take up large scale redistricting efforts. - Administration tightens grip on public information via censorship. The Library of Congress was caught deleting portions of the online copy of the U.S. Constitution, specifically protections against detention without due process. When called out, they blamed a “coding error,” though computer scientists broadly agree this is unlikely.
Meanwhile, a Paramount/Skydance merger has resulted in new levels of capitulation, including the placement of a government-sanctioned “truth arbiter” to oversee journalism at CBS. The FCC commissioner (a Dem), slammed the deal, saying it allows for. “never-before-seen forms of government control over newsroom decisions and editorial judgment-actions that violate both the First Amendment and the law.”
Removing access to news and civic info, especially via low-cost access points like local news or government websites, is a key tenet of authoritarianism.
Action Items:
Share this info! Disability is often lost in mainstream coverage.
Hit the streets if you are able, for ex: look out for ICE detention center protests, a We are America march, town halls, or other local actions. If you can’t attend in person, you can donate to carpool or bus ticket funds for larger marches.
Protect your neighbors. Warn and record in the presence of ICE. Push your local officials not to collaborate.
Donate to your local food pantry, library, clinics, cash bail funds, or other mutual aid if you can. Or volunteer your time.
Call your Senators: YES to the Appropriations Committee’s push back on budget cuts. NO to illegal redistricting and RFK’s vaccine cuts.
Make sure you’re up to date on your vaccines. Ditch the wearable tech if possible.
Think about ways to spread information offline. Make flyers and stickers. Make art.
- Executive Order: Improving Oversight of Federal Grantmaking. Trump signed an executive order this week that gives the executive branch approval control over research grants disbursed by the NHS, NIH, and other agencies.
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Week 23 Updates
SCOTUS Decision Day:
❌ Limited power of federal judges to issue nationwide injunctions, consolidating power under executive branch (limits ability to stop Trump EOs, etc.) Only SCOTUS or class-action suits remain as judicial checks.
❌ Opened door to unconstitutional revoking of birthright citizenship. Removal of birthright citizenship in Germany is widely recognized by historians as the country’s transition from democracy to dictatorship in the 1930s.
❌ States can restrict Medicaid funding to Planned Parenthood.
❌Parents can opt their students out of “exposure” to LGBTQ+ books in public school due to “religious burden” opening door for sweeping book and curriculum bans.
❌No DoEd decision. Employees continue to be paid but are not allowed to work.
✅ Protected the provision of Obamacare/ACA that keeps preventative care covered by insurance companies at no cost to patients. This includes things like wellness checkups, HIV testing and PrEP, blood pressure medication and other maintenance medications and tests.
✅ Upheld the FCC’s Universal Service Fund. The money supports the expansion of telephone and broadband service, especially in rural areas. It also subsidizes internet access at schools, libraries and low-income households.
2. Senate moves closer to vote on budget bill; McConnell Says of People Losing Medicaid “They’ll Get Over it”. The Senate continues to rework the “big beautiful” budget bill that will gut Medicaid, SNAP and other services to provide tax breaks to the ultra-wealthy. They are expected to vote soon.
A provision preventing Medicaid from paying for trans folks’ healthcare was removed, (good news, though it can still be added back in on the floor).
Wheelchair-using protesters were again arrested at the capitol protesting Medicaid cuts.
McConnell urged his colleagues to go through with the vote, acknowledging that constituents were calling in worried about Medicaid, but that “they’ll get over it.”
3. Beyond Medicaid Patients: Everyone’s Care at Risk Under New Budget. The Center for American Progress estimates the proposed budget bill will increase cost of health insurance for everyone, including those who buy plans on the marketplace or through work. Depending on family size and age, costs could increase from about $1000 to $15,000 annually.Since 49% of American children are on Medicaid, Medicaid funds large swaths of pediatric hospitals. Medicaid cuts mean less money and resources for children’s hospitals, and fewer beds for all (including those with private insurance).
Medicaid also pays for some related services at public schools like Physical, Occupational, and Speech Therapy. These cuts in addition to DoEd cuts will decimate already underfunded special education programming.
4. RFK’s new Antivaxx Committee Meets; AAP says they’ll Ignore any changes: The CDC’s vaccine advisory committee, recently repopulated by antivaxxers and COVID-deniers, has begun meeting to plan new recommendations for vaccine schedules and availability. This is important because it will affect whether offices and pharmacies receive, and insurance companies will cover, vaccines even if people ask for them.The American Association of Pediatrics released a statement that they will continue to recommend the evidence-based childhood vaccine schedule independent of any of RFK’s new recommendations. Advocates hope the AAP’s stance will pressure insurance companies into continuing vaccine coverage.
5. Deaf Man in ICE Prison for Over 80 Days without due process, interpreter: Family of a Deaf Mongolian man say he has been held in an ICE detention center for over 80 days without access to due process, or anyone who knows Mongolian Sign Language.The man, who committed no crime, had entered the country and immediately turned himself in to Border Patrol so he could ask for asylum. He brought with him a written letter detailing the reasons why he feared for his life and return to Mongolia, but agents refused to look at it.
He was denied the “credible fear screening” used to determine whether one has a case for asylum, and all other due process procedures.
6. 911 Calls from ICE Detention flood in, but many are ignored.
A report from WIRED analyzed the content of hundreds of calls from inside ICE centers from both workers and prisoners detailing a variety of horrors, including sexual assault, medical neglect, pregnancy complications, mental health crises, and deaths by suicide.People previously detained in ICE centers have spoken of being denied access to medication for chronic health conditions, a situation worsened by overcrowding, understaffing, inadequate staff training and accountability, and a general culture of cruelty surrounding the detentions.
7. Several states turn over medical data to DHS; RFK proposes more surveillance via wearables. Several states who provide healthcare coverage to noncitizens recently turned over their Medicaid data to the Department of Homeland Security, including California, Washington, Illinois and DC.The data surrender is an invasion of privacy and concerning in the hands of RFK’s HHS, who have vowed to create a “registry” of autistic people.
Advocates are also concerned this will prevent immigrants from seeking healthcare or early intervention services.
RFK praised health surveillance on Americans, saying he wanted everyone in the country to be using a wearable within four years.
Action items:
at to Do: Share this info! Disability is often lost in mainstream coverage.Call your Senator and tell them to vote NO on this dangerous budget. Choose 1 or 2 programs important to you–Medicaid, gender-affirming care, SNAP, IDEA, etc.–and mention them by name.
Calling is also important if you buy your own health insurance or get it through work. This bill affects your premiums and access to hospitals, too.
Join Project Mail Storm by writing and sending paper letters to representatives and the White House. Each is required to be opened and logged.
Make sure you’re up to date on your vaccines. Ditch the wearable tech.
Protect your neighbors.
Consider how to move toward creative acts of mutual aid, and protest, including offline materials. Make flyers and stickers. Warn (and record) in the presence of ICE. If able march, boycott, donate and/or volunteer with your local food pantry or library.
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Week 19 Updates
- The Dept of Education’s proposed 2026 budget released. The proposed DoEd budget was released this week, confirming a shift from IDEA formula grants (calculated by state need, with specific requirements to be used for special ed.) to block grant format. States would no longer be required to use the money for special ed.
Proposed program cuts for 2026: Preschool grants, State Personnel Development, Technical Assistance teams, SpEd. Personnel Preparation Program, Parent Information Centers, Educational Technology Media and Materials program, Client Assistant State Grants, several training and Supported Employment state grant programs, the Protection and Advocacy of Individual Rights, Adult Education State grants. These are only the special ed programs cut. Many more have also been defunded.
Bright spots: Funding for the Special Olympics, as well as the American Printing House for the Blind, NTID, Gallaudet University, Helen Keller National Center for DeafBlind, and Independent Living Services for Older Blind Individuals has been slated at the same rate for 2026. This is good news, and a departure from stated plans in Project 2025, which proposed defunding these programs.
The budget also proposes slight increases in funding to both the overall special education and Vocational Rehabilitation budgets. However, these increases will not be enough to offset the programs in and outside of special ed. departments that have been defunded.
The full DoED 2026 budget proposal is available here. - HHS Budget Proposal Released: The proposed HHS budget continues ahead with plans for deep cuts across the department, especially in the NIH, CDC and Administration for Children Families and Communities. HHS department cuts sought total over $32 billion.
Specific to the disability community, the ACL’s University Centers for Excellence in Developmental Disabilities, Chronic Disease Self-Management Education, Limb Loss and Paralysis Resource Centers, Voting Access for People with Disabilities, and the White House Conference on Aging are all proposed cuts.
Bright spots: The new proposal walks back some of the proposed Administration for Community Living (ACL) eliminations. These programs remain funded in the current proposal: Councils on Developmental Disabilities, Protection and Advocacy systems, the Long-term care ombudsman program, National Institute on Disability Independent Living and Rehabilitative Research (NIDILRR), Lifespan Respite Care Program, and State Health Insurance Program (SHIP), among others.
Instead of splitting the ACL’s programs across three different agencies as originally be proposed, the programs will move to the Administration for Children, Families and Communities. (This is good news, but remember deep budget cuts to the ACFC are also proposed)
The Dept of Health and Human Services proposed 2026 budget is available in full here. - MAHA Commission Report Cites Sources that Don’t exist: Last week, the commission released a report declaring a childhood “chronic disease crisis” in the US, identifying poor diet, chemicals, chronic stress, lack of physical activity, and “overmedicalization” as driving causes. The report also questioned vaccine safety.
In the days since, it’s become clear that many of the sources cited do not exist.
In addition to making the Commission’s work untrustworthy due to lack of peer-reviewed evidence, fake sources are hallmark of AI chatbots like ChatGPT, who “hallucinate” sources by putting words and names together that sound true, but aren’t real. - CDC Defies RFK, Keeping covid vaccinations on childhood schedule: Last week, The FDA announced a plan to limit access to COVID boosters, restricting them to people over 65 or with underlying health conditions only. RFK also asked specifically that covid vaccines be left off the childhood vaccine schedule. Considering RFK Jr’s profitable ties to antivax organizations, many see this as the first step in limiting overall access to vaccines.
This week, the CDC went against RFK’s statement, releasing its vaccine schedule including recommendations for covid vaccination for all children. - Deaf schools under threat as state budgets compensate for DoEd cuts: Bracing for a federal budget that eliminates nearly $300 billion in education funding, some states are taking advantage of their expected freedom under the block grant system and cutting deaf school budgets.
The New Jersey School for the Deaf (MKSD) saw their residential program completely removed from the governor’s proposed 2026 budget.
Indiana School for the Deaf and California School for the Deaf–Fremont are also experiencing budgetary issues. Indiana seeks to reallocate money previously for ISD toward general public education, while CSD Fremont struggles to maintain appropriate funding for cost-of-living in a gentrified Silicon Valley area. - NAD Sues White House to return ASL interpreters to press briefings: In keeping with eugenic rhetoric, various GOP influencers have shown particular hostility toward ASL interpreters in recent months, ever since Charlie Kirk and Chris Rufo attacked their existence at emergency briefings for the LA Fires, with Rufo calling them “wild human gesticulators”.
Upon taking office, the Trump administration quickly removed the WH accessibility page and all ASL content, and fired the WH ASL interpreter, as part of other “anti-DEIA” initiatives.
The NAD is now suing for the return of an interpreter to WH press briefings. The organization filed and won a similar suit during Trump 1.0, in order to access the emergency covid-related briefings. - Musk out, Project 2025 Writer up: Elon Musk made an exit from the White House this week after a tanking Tesla stock, reports of heavy illegal drug use, and economic models showing that tens of thousands of people, most of them children, have been killed by his pet project–the illegal closure of USAID. Most of the deaths have resulted from malnutrition and lack of oral-rehydration medication for patients with diarrhea, two program areas hit quickest by the loss of funds.
Russel Vought, a self-proclaimed “Christian Nationalist” and head writer for Project 2025, is poised to take over Musk’s work. It’s likely that he’ll be less flashy, and more effective, than Elon in the position. - Hickson v. St. David’s Healthcare Partnership poses new threat to ADA/504: Michael Hickson, a 46-year-old disabled Black man died in Texas in June 2020 after contracting Covid and being denied ventilator care and other ICU services. At the time, Texas and 24 other states had policies about rationing care that explicitly discriminated against disabled people. This is one of the things Final Rule updates seek to rectify.
The case is currently before the Fifth Circuit Court of Appeals, a conservative court. If they rule in favor of the hospital, it would set a precedent that guts disabled people’s ability to file medical facility-related discrimination claims under the ADA or Section 504.
Action items:
Share this info! Disability is often lost in mainstream coverage.
Call your Senator and tell them to vote NO on this dangerous budget. Choose 1 or 2 programs important to you–Medicaid, gender-affirming care, SNAP, IDEA, etc.–and mention them by name.
Call your state representative and tell them to include deaf schools in their budgets. You can text NJ Governor Phil Murphy at 732-605-5455
If your state is involved, ask your Attorney General to withdraw from Texas v. Kennedy. If able, donate to organizations like DREDF, ACLU, and NAD who are fighting various legal challenges.
Contact medical providers requesting they do not share yours or your child’s autism diagnosis or records with the government registry. Letter template available here.
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 march, boycott, donate and/or volunteer with your local food pantry or library.
- The Dept of Education’s proposed 2026 budget released. The proposed DoEd budget was released this week, confirming a shift from IDEA formula grants (calculated by state need, with specific requirements to be used for special ed.) to block grant format. States would no longer be required to use the money for special ed.
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Template for requesting doctors do not share medical information
Hello! We aren’t lawyers, just regular people sharing regular-person advice. This template was originally posted on the Legally Autistic FB page, and shared with us via E. Thunderwood on Instagram. Thanks to them for their hard work on this matter.
It’s unclear, given the breadth of the current administrations’ defiance of laws, as well as Medicare/aid’s access to patients’ medical information to a degree already, how effective this request will be. It’s our feeling that it’s worth a shot; your mileage may vary.
Link to NIH press release about moving forward with the Autism Database.
Link to NPR Article about kinds of information that will be integrated into database.
Template:
Part 1 CONFIDENTIAL MEMORANDUM
To: [Doctor’s Full Name]
From: [Your Full Legal Name]
Date: [Insert Date]
Subject: Restriction on Disclosure of Protected Health Information (PHI)Dear Dr. [Doctor’s Last Name],
I, [Your Full Legal Name], date of birth [MM/DD/YYYY], am writing to
formally exercise my rights under the Health Insurance Portability and Accountability Act (HIPAA), 45 CFR 164.522(a), to restrict the disclosure of my protected health information (PHI).Specifically, I am hereby directing that you and your practice not disclose any part of my medical records, including but not limited to my autism diagnosis and any related treatment notes, to the U.S. Department of Health and Human Services (HHS) or any of its agencies, except where disclosure is required by law (such as in response to a valid court order or for public health reporting where no waiver is permitted).
Part 2This restriction applies to:
Verbal, written, or electronic disclosures;
Disclosures for research, audits, or program evaluations not otherwise required by law;
Any sharing of medical records through Health Information Exchanges (HIEs) without my express written authorization.
I understand that under 45 CFR 164.522(a)(1)(ii), you are not required to agree to requested restrictions unless the disclosure
is for payment or healthcare operations and I have paid out-of-pocket in full. However, I am asserting this request as a formal limitation on your voluntary disclosures unless legally compelled.Please retain a copy of this memorandum in my file and confirm in writing that you will honor this restriction, unless and until I provide express written authorization or legal process mandates otherwise.
Thank you for your attention to this matter.Sincerely,
[Your Full Legal Name]
[Your Address]
[City, State ZIP Code]
[Phone Number] -
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.