Disability Rights Watch

Category: RFK Jr.

  • 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.

  • Week 22 Updates

    1. SCOTUS Upholds Ban on Gender-Affirming Care for Trans Minors. SCOTUS ruled 6-3 that states can ban trans minors from receiving gender-affirming care. Gender-affirming care can include psychological support, reversible puberty blockers, and hormone replacement therapy. In all but rare cases, surgery is not available to patients under 18. Less than 900 total surgeries on minors were performed in the US over a 3-year-period.

    In addition to being in opposition to scientific consensus and harming the mental and physical well-being of trans kids, the ruling also takes away doctor-parent autonomy in choosing what is in the best medical interest of the minor, opening the door for government control over what kinds of medicine and care everyone can access.

    2. Described and Captioned Media Program Funding Cut. The Described and Captioned Media Program (DCMP), previously funded through DoED, was “the only free, national source of accessible educational videos for both deaf and blind, and deafblind students.” Videos with captions, ASL interpretation, and descriptive audio made a variety of educational material available for free for families and teachers.

    Due to DoEd’s funding cuts and the transition to block grant funding, states receiving money with no strings attached can to use it for accessible media…or not.

    The DCMP grant, issued through OSERS, was also a main source of income for the National Association for the Deaf (NAD).

    3. Department of Education Employees in Limbo Awaiting SCOTUS. Thousands of DoED employees await a ruling from SCOTUS’s emergency “shadow docket” process about whether their illegal firings will be overturned.

    Possible outcomes:
    SCOTUS could decide not to take the case; employees return to work.
    SCOTUS takes the case but goes on vacation 1 July, leaving things undecided until at least September.
    SCOTUS issues an official decision in either direction.
    SCOTUS consolidates the DoED case with cases of other federal agencies (unlikely, as DoED case also addresses the legality of Trump’s Executive Order about the department).

    Meanwhile, the administration seeks to continue its backdoor dismantling of federal agencies through OMB without Congressional “interference.”

    4. Department of Energy Opens New Attack on Section 504. Over the past several weeks, the Department of Energy has been working to weaken Section 504, a statute that protects disabled people’s right to enter and be accommodated in any spaces that receive federal funding, including government buildings, public schools, hospitals that accept Medicaid, and more.

    The change seeks to allow various entities to decide whether or not they want to include accessibility and accommodations for disabled people in their updates based on whether they are “efficient.”

    Public comment on this change recently closed, but you can still contact your representatives to voice your concerns about DoE and other attempts to attack 504 and ADA protections.

    5.  Trump’s EPA Considers Bringing Back Asbestos: The Biden Administration had previously banned the final type of asbestos used in the US. The current EPA has now taken that policy “under review.”

    Asbestos is a carcinogen that killed millions of Americans due to a rare and aggressive cancer called mesothelioma, though it has been linked to other cancers of the abdomen, ovaries, and larynx.

    The EPA under Trump has also sought to roll back other protections, like limits on coal emissions and toxic “forever chemicals” in drinking water, even as other parts of the administration tout a goal to make the nation “healthy again.

    6. Hickson vs St. David’s Healthcare Partnership Threatens ADA/504 in Healthcare Settings. 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.

    7. Good News: Federal Judge Rules Some NIH Grant Terminations “Void and Illegal.” On Monday, a Federal Judge ruled in a pair of cases that the administration’s termination of NIH grants was both discriminatory and had “no force or effect.”

    Most of the grants covered in the suits were terminated due to mention of LGBTQ+ populations, either directly or indirectly.

    While the ruling only reinstates grants specifically named in the suits, it opens the door for more organizations to seek reinstatement of funding through the courts.

    Keep pressure on your electeds to let them know you are watching, that the administration complies with the court’s rulings.

    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.

    Join Operation Mail Storm by writing and sending paper letters to representatives and the White House. Each is required to be opened and logged.

    If your state is involved, ask your Attorney General to withdraw from Texas v. Kennedy. If able, donate to organizations like DREDF, ACLU, who are fighting various legal challenges, and ADAPT who routinely put their bodies on the line in activist work.

    Consider how to move toward creative acts of mutual aid, and protest, including offline materials. Make flyers! Call out misinformation. Warn your neighbors (and record) in the presence of ICE. If able march, boycott, donate and/or volunteer with your local food pantry or library.

  • Week 21 Update

    1. Department of Energy leads new attack on Section 504 Over the past several weeks, the Department of Energy has been working to weaken Section 504, a statute that protects disabled people’s right to enter and be accommodated in any spaces that receive federal funding, including government buildings, public schools, hospitals that accept Medicaid, and more.

    The change seeks to allow various entities to decide whether or not they want to include accessibility and accommodations for disabled people based on whether they are “efficient.”
    The language is vague about the breadth of spaces that would be affected or what precedent it would set for 504/ADA enforcement.
    Public comment is open until June 16. Templates are available at the link above.

    2. Hospitals Warn Medicaid Cuts Will Devastate Rural Facilities Republicans continue to work on a budget bill that seeks to cut $785 billion from Medicaid programs across the next decade.
    Rural doctors and hospitals, especially in GOP-leaning populations in the middle of the country, will be disproportionally affected, as those populations tend to rely more heavily on Medicaid programs.

    This, alongside recent private equity takeovers of hospitals to flip them for profit, is creating healthcare deserts, where people may face extremely long wait times and/or travel for hours to reach emergency care.

    3. RFK Jr. Dismisses Entire Sitting Panel of CDC Vaccine Panel
    RFK Jr. dismissed the entirety of the CDC’s vaccine advisory panel, which previously had 17 members.

    Later in the week he announced 8 people to serve as their replacements. At least two have been very vocal against COVID mitigation measures, like masking, as well as vaccines.
    It is another of RFK’s many attacks on vaccine science since taking power at HHS, coinciding with the large sums of money he receives from antivax lobbyists.

    Healthcare providers and advocates are concerned that changes to vaccine recommendations will affect access, especially since health insurance companies use the panels to make decisions on what they will pay for.

    4. Antivax and Ableist Approaches to Autism Allow Conspiracy Cures to Gain Traction, Poison Children. The platforming of vaccine and autism-focused misinformation, and the removal of some misinformation safeguards by Google/YouTube, has led to an uptick in dangerous health conspiracies and grifts.

    One such group is the “bleach community” who attempts to “cure” autistic children by forcing them to ingest bleach.

    Poisoning children with bleach doesn’t make them less autistic. However, it can cause seizures, internal chemical burns, vomiting blood, and death. Platforming and both sides-ing nonscience has consequences.

    5. ASHA Moves to End DEI and Cultural Competency Certification Standards ASHA announced this week that they seek to strike language like “cultural humility; diversity, equity and inclusion; culturally and linguistically diverse; cultural responsiveness; equity in care”

    They claim funding concerns due to federal mandates, but they are privately funded by member dues

    ASHA is already a contentious organization. For SLPs and Audiologists, forgoing a supposedly “voluntary” membership can affect licensure in some states. Patients have been harmed by a long history of ableism, including shutting out D/HH and signing professionals, and indecision on dXs like CAPD leaving patients without care (due to no billable insurance codes)

    6. Good News: SCOTUS Ruling Makes ADA Complaints Easier in School Settings The unanimous ruling in AJT vs. Osseo Area Schools reifies the ADA is enforceable in public schools, and that students and families do not have to prove “bad faith” or “gross negligence” in order to file a complaint.

    Instead, schools will be held to the same legal standard as in other ADA-related cases: “deliberate indifference.” This is a big win for disability rights advocacy, especially in a time when legal oversight for IDEA, the law governing special education, is nearly eradicated by DoEd layoffs.

    DOJ oversight will be critical for enforcement of this new ruling, concerning as that department has already sought to weaken ADA guidance in recent weeks.

    7. Good News: Florida will Teach Disability History in K-12 Schools A new law in Florida mandates that the first two weeks in October will include curriculum on disability awareness and history.

    How the law will be implemented and the curriculum developed are still in their early stages.

    Some FL advocates have expressed concerns about the vague language of the law, as well as the way it siloes studies of specific disabilities into different grade levels; however, most generally agree it is a good first step in a state that is often hostile toward diversifying curricula.

    8. Hickson vs. St David’s Healthcare Partnership threatens ADA/504 in healthcare settings     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.

    Leave a comment with the Dept. Of Energy speaking against their proposed changes to 504 enforcement. Templates available here.

    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, and ADAPT who routinely put their bodies on the line in activist work.

    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.

  • 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.

  • Week 18 Updates

    Week 18 Updates

    1. House passes budget bill containing deep cuts to Medicaid, SNAP, Dept. of Ed. 215 Republican Representatives voted for Trump’s “Big Beautiful Bill,” advancing plans to cut Medicaid/care, SNAP, HUD and education funding in order to up DHS spending and extend tax breaks to the ultra-wealthy.

      Medicaid: adds work requirements, increases “eligibility checks,” and cuts funds.

      SNAP: Raises age so recipients up to 64 must meet work requirements, cuts funds.

      DoED: cuts funds and shifts them to block grant format. Exact appropriations numbers for DoEd and others are not expected to be available until July (per internal sources).

      The bill heads to the Senate, where it needs 51 votes to pass. Some GOP Senators have said they won’t vote for Medicaid cuts, while others seek even deeper cuts. A failed vote will send the bill back to the House.
    2. Budget bans gender-affirming healthcare for people on Medicaid. As part of the budget bill, the House added a provision banning gender-affirming care for those using Medicaid programs. Originally the ban had only been for minors, but has now been extended to all ages.

      The ban also extends to plans sold on the marketplace under the Affordable Care Act (ACA). This is likely to face legal challenges as many states have already prohibited plans from refusing care to trans people.

      Studies estimate that about 1 in 4 trans people rely on Medicaid coverage. Nearly half of trans people also have a disability(1 , 2).
    3. Dept. of Ed updates: On Thursday, a MA judge blocked Trump’s attempt to close DoED, including the executive order to McMahon to facilitate the department’s closure, and the mass firings conducted in March.

      The judge ordered that those employees be reinstated, and underscored that closing DoEd would require an act of Congress. The administration has already filed an appeal.

      This is good news, but the budget bill still contains massive funding cuts, shifting remaining dollars to voucher programs and block grants that have no enforcement mechanisms. States can use funds previously for specific programs like IDEA for whatever they want, leaving students with IEP/504s at the whim of districts. If IEPS are not followed, its unknown who, if anyone, families can turn to for support.
    4. MAHA commission report skews focus, targets vaccines. RFK Jr’s MAHA commission released a report on what it called the childhood “chronic disease crisis” in the US, identifying poor diet, environmental chemicals, chronic stress, lack of physical activity, and “overmedicalization” as driving causes. The report also questions vaccine safety.

      The report does not address socio-economic factors that may contribute to children’s health, like poverty, or firearm or motor vehicle related deaths. Injury-related deaths account for 60% of deaths for children under 18.

      The commission is supposed to present a strategy for addressing childhood disease in August. However critics say budget and personnel cuts at HHS undermine the commission’s ability to meaningfully implement a plan, or even track data.
    5. FDA Seeks to restrict access to covid vaccines: The FDA announced a plan to limit access to COVID boosters, reversing previous policy. If implemented, COVID vaccines would be restricted to people over 65 or with underlying health conditions only.

      The FDA said manufacturers of COVID boosters seeking broader distribution to younger people would need to fund and conduct placebo-controlled trials, a lengthy process that would render each version of the vaccine useless given the rate of mutation.

      Considering RFK Jr’s profitable ties to antivax organizations, many see this as the first step in limiting overall access to vaccines.
    6. Texas vs Kennedy updates: Thanks in large part to disabled organizers, Count 3 of the original filing, (formerly Texas v. Becerra) “Section 504 is Unconstitutional” has been withdrawn. This is great news!

      BUT, the lawsuit continues to attack Final Rule, important updates to 504 guidance re: 21st century technology (telehealth, websites), pandemic-era healthcare (ventilator rationing), and protecting disabled people’s rights to live in community instead of being forced into institutions.

      Kennedy issued a “clarification” weeks ago noting mention of gender dysphoria in the preamble is not an enforceable part of the law, so the transphobic framing against Final Rule is now moot.
    7. Hicks vs St David’s Healthcare Partnership poses 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:
      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.

      Leave a public comment with DoED saying no to funding cuts and block grants. They are required to read and log them!

      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 battles.

      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.

  • 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]