Disability Rights Watch

Category: Medicine

Information about medical rights.

  • Week 33 Updates

    1. 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.

    1. 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.

    2. Week 29 Update

      1. 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.
      2.  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.
      3. 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.
      4. 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.
      5. 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.
      6. 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.

    3. 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.

    4. Week 19 Updates

      1. 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.
      2. 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.
      3. 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.
      4. 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.
      5. 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.
      6. 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.
      7. 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.
      8. 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.

    5. 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 2

      This 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]

    6. Week 15 Update

      Week 15 Update

      1. White House releases harrowing budget requests. On Friday, the White House released their budget request to Congress. The 46 pg document seeks massive cuts for almost all social and educational programs domestically and internationally, cuts totaling $163 billion.

      Departments of Defense and Homeland Security are two of the handful of that see increased spending in order to better fund police militarization and the deportation of immigrants and kidnapping of US citizens by ICE.

      This week’s post will examine some key budget asks affecting the disability community. This is not a complete list, but a link to the full document is available here. Items 1-4 on this post are pulled directly from that spreadsheet. It’s important to note that these are *nonbinding requests* from the President. It will be up to Congress to write and pass specific legislation. Call them.

      2. WH Budget Requests: Dept. of Education
      $60 million increase in funding for charter schools

      $4.5 billion in cuts for K-12 education / Title I programming for underfunded schools

      $49 million in cuts for DoED’s Office of Civil Rights

      A vague category of “Special Education” is listed to “remain at 2025 levels. it mentions IDEA by name, but it’s unclear to what extent programs and sub-departments will be included. The explanation also appears to employ Project 2025’s block grant distribution, meaning it’s suggested the money be used for special ed, but with limited oversight.

      Many other DoED programs receive explicit cuts. There is no mention of special institutions, like Gallaudet, NTID, Printing House for the Blind, etc. in the document.

      3. WH Budget Request, HHS
      $500 million increase to “MAHA” a slush fund for RFK Jr’s antivax and “overreliance on medication” initiatives

      $4 billion in cuts to LIHEAP the program that provides heat and AC assistance for low-income families.

      $1.9 billion in cuts for services for refugee and unaccompanied minors

      $315 million cuts to Preschool Development Grants

      $1.7 billion cuts to HRSA, $3. 5 billion cuts to the CDC
      $17.9 billion cuts to the National Institutes of Health (NIH)

      $1 billion cuts to Substance Abuse and Mental Health Services Administration (SAMHSA)

      $180 million in cuts to STI and teen pregnancy prevention programs

      $674 billion in cuts to Medicaid and Medicare Service

      4. WH Budget Request, HUD:
      $26 billion cut from rental assistance state block grants, money sent to states to support rental housing for the elderly, disabled, and those aging out of foster care.

      $479 million in cuts from Native American and Hawaiian housing block grants

      $532 million cut from Homeless Assistance Program

      $296 million cut from Surplus Lead Hazard Reduction and Healthy Homes Funding

      Additional cuts to other self-sufficiency, fair housing, and community grant programs

      5. WH Budget Requests, our liberation is intertwined: Deep cuts to the Environmental Protection Agency, the National Parks System, the Department of the Interior (including significant reductions in funding for Native American reservation-based social services and education), aid-based programming within the DHS, FEMA and other disaster-relief funding, Department of Labor job skills programs, funding for libraries, HBCUs, PBS and NPR, programs to combat misinformation, and more have all been explicitly named and targeted for cuts at the President’s request.
      These cuts will hurt everyone, and particularly those living at the intersection of multiple marginalized identities.

      7. Gallaudet suspends enrollment of several majors as budget cuts loom. A list from Provost Rashid said admissions to the following programs will be suspended:
      Secondary Education programs, including the BA and MA in Secondary Education in Biology, Chemistry, English, General Sciences, Mathematics, and Social Studies, Undergraduate Teacher Preparation, Programs in Early Childhood and Elementary Education

      The announcement comes as deaf studies and education programs shutter at universities across the country.

      GU leadership continues to be nontransparent about the future of the university without its DoED Liaison, who previously disbursed funding and advocated on behalf of deaf education. The University has gone so far as to say that the liaison has been reinstated, which is untrue.

      The only liberal arts university for the deaf in the world faces an uncertain future without mention in Trump’s budget request (yes, that would be illegal).

      8. Texas v Beccera 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.

      9. RFK makes wild vaccine claims on air as HHS floats dangerous clinical trials.
      Speaking live on News Nation Wednesday, RFK Jr. repeatedly claimed the MMR vaccine contains “aborted fetus debris.”

      IT SUPER DOESN’T! The MMR vaccine, like most vaccines, was cultured within (sterile) fetal cells, one of two lines from the 1960s. It does not contain fetal cells or human DNA because the virus kills the cell. The vaccine virus is also purified before it is made into a replicable vaccine.

      HHS also said they want to conduct placebo trials on existing vaccines, raising ethical concerns with public health experts. Not giving available effective and thoroughly-tested vaccines to trial participants and infecting them with, and allowing them to die from preventable disease is cruel, and in violation of the Hippocratic Oath.

      10. HHS releases harmful anti-trans report, highlights willingness to distribute misinformation. On Thursday, HHS released a “report” seeking to disparage gender-affirming care for trans youth, care that is already known to be safe and effective as backed by decades of peer-reviewed research.

      The report’s authors are anonymous, and it is not peer-reviewed. No trans people are consulted in the report, though anti-trans extremists are cited.

      Every human deserves access to healthcare. The disability community stands with trans youth.

      Multiple studies also estimate that 27-50% of trans people are disabled, too. (1, 2, 3)

      The report also demonstrates a willingness to publish blatant disinformation to support the administration’s various eugenic vendettas. This won’t be the last.

      Take Action:

      What to do: Share this info. Disability is often lost in mainstream coverage.

      Call your Representative and tell them not to accept the White House’s requested budget cuts. Choose 1 or 2 programs important to you personally and mention them by name when you call.

      Call your Senator and tell them to take meaningful action against illegal deportations and ideological-based arrests.

      Contact the Gallaudet Board of Trustees and urge transparency in communication with the community, and action to protect the university.

      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 march, boycott, donate and/or volunteer with your local food pantry or library.

    7. Week 13 Updates

      Week 13 Updates

      1. 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.
      2. 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.
      3. 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.”
      4. (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.
      5. 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.
      6. 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.
      7. 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.
      8. 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.
      9. 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.
      10. 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.

    8. Week 12 Update

      Week 12 Update

      1. House passes budget framework, paving the way for deep social cuts. The House passed the budget framework that paves the way for Trump’s desired budget, including trillions in tax cuts for rich people, increased defense spending, increased spending autonomy for the President, weakening social security, and an estimated $880 billion in cuts to Medicaid.
        The House and Senate must now work to turn their resolutions into actual legislative text, which will reveal the minute breakdown of their spending plan and cuts. This is typically a months-long process.
      2. Markets roil as Trump plays with global tariffs, threatens more. Trump issued tariffs on multiple countries in a questionably legal process this week, promptly tanking the global market. He paused some of the tariffs for 90 days due to instability, but kept a tax at over 100% on goods from China, who also levied their own tariffs. (Update: as of noon on 4/12, Trump also paused tariffs on electronics like smartphones and computers.)

        Tariff costs are passed down to the buyer, meaning further hikes in a market where food and basics prices are already soaring. This will be a hardship for all Americans, but especially those already struggling with food insecurity, and/or those on a fixed income.

        Trump also announced tariffs on pharmaceutical imports to be implemented “shortly,” with no details yet on which medications will be affected. Medical device and equipment prices are already expected to rise due to current tariffs.
      3. HHS fallout reveals more disability-centric programs lost. Massive cuts at the CDC’s National Center on Birth Defects and Developmental Disabilities last week left advocates reeling. Now the cuts are coming clear:

        EHDI programming for universal newborn hearing screenings has been eliminated. States have received some funding in 2025, but may not receive the rest.

        The CDC partnership with the Special Olympics has also been eliminated. Trump and DeVos first tried to defund the program in 2017. (4/12, clarifying note: The Special Olympics funding and oversight primarily came from OSERS in the Dept of Ed, but those employees were also laid off in earlier an earlier RIF).

        A department dedicated to sickle cell research is gone.

        The team for national data collection on adults with cognitive disabilities is gone, just before a key report about the rise in cognitive disability in young people was to be released. Some say it’s being blocked so RFK can bury evidence contradicting his own team’s theories about “autism’s origins,” which he’s promised to “reveal” by September.
      4. White House Press Secretary says the administration is seeking a “legal” pathway for deporting US citizens. White House press secretary Leavitt mentioned this week that the administration was looking into whether there is a legal pathway to deport US citizens. (There’s not!)

        Leavitt said the move would only be exercised on “criminals” who commit “heinous” crimes. However, that the DOJ has already been stripping students of their visas for protests and other thought crimes, and 75% of the immigrants who were illegally deported to El Salvador have no criminal record suggest they will continue to use their power for show against anyone they want.

        Legal scholars and historians fear the move will be used to strip the citizenship and/or detain anyone “undesirable,” a frightening a echo from 1930s Germany’s stripping of citizenship from Jewish people and others, the 1940s US internment of Japanese people, and other war crimes.
      5. House passes “Safeguard American Voter Eligibility Act” (SAVE Act). The proposed law, which will require people to present proof of citizenship in-person in order to register to vote, passed the House this week, including votes from for Democratic representatives.

        One major concern is that women who changed their name due to marriage won’t be able to use their birth certificates for proof of citizenship, since their surnames no longer match. An amendment was suggested to remedy this, but it was denied.

        People with any name different than what’s issued on their birth certificate will need a passport to register, and everyone will need to present this proof in-person. 50% of Americans have no passport.

        SAVE would place undue hardship and expense, and restrict the right to vote of the elderly, disabled, women and trans folks, those living rurally and more.

        The bill is likely to be voted down in the Senate, but it is still worth calling about.
      6. DOGE accesses Social Security database, falsely begins declaring some recipients “dead” to stop payments. DOGE has shown their inability to understand basic information stored within the SSA’s database over the past months, in part because it is written in an archaic coding language. Previously DOGE said they would rewrite the code, but that is a long-term project.

        In the interim, DOGE has declared some people dead as a way of removing them from the payment system. This has largely attacked immigrants, but some US citizens were also placed into the “death master file.”

        Beyond stopping social security payments, falsely declaring someone dead will have massive implications on their ability to move through the world, may cut access to their credit cards and more. SSA employees who tried to stop DOGE were ejected from the building.
      7. Texas v. Becerra lawsuit continues. Attorneys General continue to use transphobic rhetoric to attack Final Rule and Section 504.

        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.
      8. 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 NY, MA, PA, MI, WI, IL, MN, CO, OR, and WA officials have declined to sign, while other states have declared their intent to sign or are still in review. (full map of states’ declared intent)

        Action:
        Share this info. Disability is often lost in mainstream coverage.

        Call your Representative and tell them to intervene on behalf of the Dept of Education, SSA and HHS regarding illegal layoffs.

        Call your Senator and tell them to vote NO on SAVE and any budget cuts to Medicaid.

        Contact your school board and state’s education officials, and tell them not to comply with McMahon’s baseless anti-DEI directive.

        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, local protest and growing awareness, including offline materials. Make flyers! Warn your neighbors in the presence of ICE. If able, donate or volunteer with your local food pantry or library.

    9. Week 11 Update

      Week 11 Update

      1. More HHS layoffs gut public health and research. HHS fired an additional 10,000 workers this week, shuttering entire departments, ending grants and cutting spending by an additional third across the board.

        The closures will impact every American’s safety from infectious disease, foodborne illness, worker safety, HIV, STI and TB programs, maternal health, and vast amounts of research.

        Disabled-specific closures include the Administration for Community Living, the CDC’s Office of Health Equity, cuts to HRSA, and several subdivisions of the National Center on Birth Defects and Developmental Disabilities.
        For the full list of HHS departments cut, see this running list.
      2. Economy in freefall as Trump and DOGE slash safety nets. On Wednesday, all Low Income Heat and Energy Assistance Program (LIHEAP) staff were fired. The program helps struggling families with utility bills. Many food banks also reported not receiving expected deliveries of food due to more cuts from the USDA, in addition to the $1 billion in cuts previously announced, though the funding had already been allocated.

        This comes as the stock market freefalls in the wake of Trump’s latest tariff plan, prices continue to rise, the GOP targets Medicaid, dismantles public education and libraries, and as DOGE attacks social security as a “ponzi scheme” and threatens to crash the system by recoding the database.
      3. Deaf students and researchers lose programs, funding, especially in STEM. Cuts at the NIH this week obliterated programming for deaf people in STEM at the undergrad, graduate, and post doc levels. The RISE and BRIDGE programs out of NTID were impacted, as well as individuals’ postdoc funding.

        Gallaudet’s Center for Black Deaf Studies is imperiled by the termination of it’s founder Dr. Joseph Hill’s NEH grant.

        The University of Minnesota also shut down their deaf studies program this week, midsemester with no warning– the reason is unclear.

        Removing deaf (or culturally-competent) professionals will have a variety of educational and employment impacts, and will allow ableism to run unchecked through deaf-related research.
      4. Kidnapped Rümeysa Öztürk suffers asthma attacks in ICE detention, ICE withholds medication. Öztürk, a Turkish PhD student and former Fulbright Scholar, was taken off the street by plainclothes officers in March, likely for having co-written an op-ed in her school newspaper that criticized the school’s response to Gaza-related protests.

        Öztürk was being illegally detained in Louisiana, where she suffered several asthma attacks and was denied her medication, one of many dangerous conditions for the chronically ill, disabled, and everyone, inside these prisons. In a hearing Thursday, a judge blocked the DOJ’s attempt to deport Öztürk, and moved her petition to be heard in VT (instead of LA).Öztürk has not been charged with a crime.
      5. DoEd threatens to revoke funding from schools who don’t sign an Anti-DEI loyalty pledge. DoEd issued a letter to state education leaders across the country, threatening to withhold funding unless schools eliminate anything that could be construed as “DEI” programming. The letter asked administrators to sign a document promising their adherence to anti-DEI guidance within 10 days.

        The directive throws confusion on the administration’s attempts and promises to dismantle DoEd. It’s unclear who will enforce the directive or distribute the funding, which DoEd’s acting assistant Civil Rights secretary called a “privilege,” but is actually taxpayers’ money.

        Disabled and multiply marginalized students, particularly those in rural and low income districts, will suffer most from a loss of Title 1 and other funding.
      6. Texas v Becerra lawsuit continues. Attorneys General continue to use transphobic rhetoric to attack Final Rule and Section 504. 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.
      7. Early Hearing detection and intervention programs impacted by CDC cuts. Federal EHDI programming gave funding and resources to states to conduct universal newborn hearing screenings, and support deaf and hard-of-hearing babies and their families. Full impacts are still unclear, but these workers were housed at the CDC’s NCBDDD, which saw massive cuts this week. Maternal and Infant Health divisions elsewhere in HHS also saw cuts that may impact EHDI funding.

        Without universal hearing screenings for early detection, d/hh children will be at higher risk for language deprivation syndrome–when incomplete access to a first language before approx. age 5, causes pervasive social, emotional, educational and cognitive damage.
      8. Local: Several school districts are announcing the removal of special ed programs and students. Without an OSEP director and with the DoEd civil rights division slashed, it’s unclear if there is any recourse for families.

        Two districts who made headlines are the South Range Local District, OH, who told 7th and 8th graders with IEPs not to return next year due to “staffing issues,” and Dysart Unified Schools, who notified families they were shuttering their high school students’ special ed program, making plans to send them to a different school without family consultation.

        This trend is likely to continue without DoEd to enforce IDEA, the law that guarantees disabled children’s rights to K-12 education.
      9. Do not comply in advance (good news). Immediately after McMahon’s DoEd issued the directive to withhold funding from schools pending receipt of their anti-DEI loyalty pledge, the New York state Dept. of Education replied forcefully declaring that they would not comply, citing a lack of legal standing for the move.

        The Mayor of Chicago also threatened that the city would sue the if funding is withheld. Other cities and towns are likely to follow.

      Take Action:

      Share this info. Disability is often lost in mainstream coverage.

      Call your Representative and tell them to intervene on behalf of the Dept of Education and HHS regarding illegal layoffs.

      Contact your school board and state’s education officials, and tell them not to comply with McMahon’s baseless anti-DEI directive.

      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.

      Attend one of the nationwide protests today, Saturday, 5 April if able. Wear a mask!

      Consider how to move toward creative acts of mutual aid, local protest and growing awareness, including offline materials. Make flyers! Warn your neighbors in the presence of ICE. If able, donate or volunteer with your local food pantry or library.