Disability Rights Watch

Category: Medicine

Information about medical rights.

  • 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.

  • 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]

  • 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.

  • 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.

  • 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.

  • 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.

  • Week 10 Update

    Week 10 Update

    1. The Department of Health and Human Services laid off 10,000 employees. HHS underwent sweeping layoffs this week, with whole sub-agencies and departments shuttered and grants cut.

      This comes as the administration continues to say that special education oversight and services will be moved to HHS. Now the department not only has no educational expertise, but is also stretched thin.

      Programs for HIV and infectious disease prevention were abruptly eliminated on Thursday. More clarity on the fallout from layoffs and specific departments lost is expected through the weekend.
    2. RFK Jr. begins shutdown of the Administration for Community Living (ACL). On Thursday, HHS began restructuring in the wake of the layoffs, including a move to close the ACL. The ACL supports disabled and elderly people’s right to live and work in-community. It helps ensure programming access is efficient so disabled people can be more independent and financially stable.

      Without the ACL, advocates are concerned about economic impacts, an increase in homelessness, and a move back toward forced institutionalization.
    3. RFK Jr. taps antivaxxer to lead study about link between autism and vaccines, forces FDA’s Peter Mark’s resignation. RFK Jr. announced a large-scale federal study into the already-debunked theory linking vaccines and autism. He forced the resignation of top FDA vaccine scientist Peter Mark, and has selected noted antivaxxer David Geier to lead the project.

      Geier has published numerous false papers on vaccines and autism with his father, Mark Geier, based on research they conduct in their basement.

      RFK Jr. himself frequently profits from antivax rhetoric, and has spoken disparagingly of autistic people a “threat” to the American way of life. Geier is not a doctor. He has a bachelor’s degree from the University of Maryland.
    4. Deaf community sees tough losses in technology and educational funding. Gallaudet University lost a multi-million dollar grant for deaf technology under the HHS reorganization, while an NIH cut axed an undergraduate STEM program for deaf students out of NTID. (Per internal sources; specific numbers and grant titles pending secondary confirmation.)

      Minnesota’s Deaf Community Support Center was also forced to close its doors after a federal COVID-19 related grant was cut.

      The Liaison who oversees and advocates for funding for NTID, Gallaudet, and other special institutions, was fired in the DoED layoffs, despite that position being mandated by the 1986 law The Education of the Deaf Act. These remain a small sample of what is likely to come from HHS and DoED layoff fallout.
    5. DOGE plans to rewrite Social Security database, threatening delayed payments. In an ongoing effort to prove as yet nonexistent fraud, DOGE has decided to re-program the SSA’s database into an updated programming language.

      COBOL, the current language of the database, is legitimately old. However, safely recoding a project of this scale would take years, and DOGE has set a 9-month timeline. Experts are concerned this will put the integrity of the database at risk, and could cause delayed or lost payments, or total collapse.

      Simultaneously DOGE cuts have closed 47 field offices, as well as phone verification options, forcing the elderly and disabled to travel long distances to acquire benefits.
    6. Texas vs. 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 April.
    7. Executive Order, “Preserving and Protecting the Integrity of American Elections.” On Tuesday Trump issued an illegal executive order aimed at sweeping election reform, including: mail-in voting restrictions, requiring a REAL ID or passport to prove citizenship to vote, and the Homeland Security and DOGE creation and “review” of a list of registered voters.

      The law clearly says that states have the power to oversee and regulate their own elections, so this executive order will be difficult to enforce. However, we may see conservative states comply in advance. Limiting mail-in access or requiring in-person registration would infringe on disabled and elderly people’s ability to vote.
    8. Illegally fired DoED employees pack up; Senate sees new bill to abolish department. DoED employees laid off in a massive gutting of the department two weeks ago returned to pack their things on Friday. Many of those firings were illegal, as certain positions within DoED are mandated by educational law. People lined the sidewalks to cheer the former employees in a “clap-out” event as they left.

      21 States are currently suing to have DoEd employees return to work. A timeline of the suit is unclear, as is whether the current administration will follow a judge’s orders.

      Rand Paul (KY) introduced a new bill, S 1148, to eliminate the department on Wednesday.
    9. Reminder: Our liberation is intertwined. It’s difficult to keep up with the pace of the news, but important to keep sight of the fact that all marginalized people’s rights are intertwined.

      Just as the Section 504 lawsuit sets precedent for the destruction of other civil rights clauses, so too does the arrest and deportation of immigrants without due process affect disabled people’s, and everyone’s, rights to a functioning judicial system with the power to roll back illegal overreaches, and an overall government that adheres to the Constitution. Solidarity is our only way through.

    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, the ADA, the Administration for Community Living (ACL) and other HHS programs.

    Make sure your vaccines are up to date, especially if you may have received an inactive virus version of the MMR vaccine from 1963-67.

    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.

    Deaf folks and allies–contact the Gallaudet and NTID Boards of Trustees and urge them to be proactive about the futures of these universities.

    Consider how to move toward creative acts of growing awareness, including offline materials, local protest and mutual aid.

  • Breaking: Department of Justice Begins Rollback of ADA

    Breaking: Department of Justice Begins Rollback of ADA

    Yesterday the Department of Justice began removing guidance related to the Americans with Disabilities Act (ADA), the law that protects disabled people’s rights to access and accommodations in public.

    While the law itself remains on the books, the definition of legal “access” is developed by guidance from the US Access Board. The Board, comprised of at least half disabled people, is supposed to meet annually, but their meeting was cancelled in January. Now the law is being hollowed out by the DOJ.

    The DOJ is using a January Executive Order aimed at “lowering the cost of living” as the justification for the rollback.

    That accommodating disabled people is too expensive is age-old rhetoric favored by eugenicists and Nazis, and has been used to justify segregation, institutionalization, neglect, forced sterilization, and murder of disabled people here and abroad.

    So far, 11 guidance documents have been removed, with protections ranging from self-service gas stations, customer communication, hotel accessibility, general public-facing businesses, and several pandemic-era additions. (Links are to archived content; pages have since been removed.)

    This is an ongoing story.

  • Week 8 Update

    Week 8 Update

    1. Hundreds of Illegal Layoffs at the Department of Education. DoED laid off over 1300 employees Tuesday night, nearly half the department. Secretary McMahon made a statement that layoffs would not affect special ed, nor any legally-mandated positions, but that was a lie.

      Layoffs were conducted without review via a generic, “Dear colleague” letter, including eliminating workers in mandated positions that are not allowed to be vacant by law. Many workers who were supposed to continue on until the end of the month or longer cannot consistently access their emails and computers due to DOGE control.

      The layoffs spanned a variety of departments, cutting large swaths of the Office of Civil Rights (OCR).The Office of Special Education and Rehabilitative Services (OSERS) was also impacted.

      The entire office providing funding for Gallaudet, NTID, the American Printing House for the Blind, Helen Keller National Center, and other special institutions has been laid off.

      There is also currently no director at the head of OSEP, the office overseeing IDEA. McMahon sparked anger in an interview after the layoffs, in which she revealed she did not know what “IDEA” stands for.
    2. Regional DoEd Offices Shuttered. In addition to the layoffs, seven regional Department of Education offices have also been closed down: Cleveland, Boston, New York, Dallas, San Francisco, Chicago, Philadelphia.

      Among many impacts, this will further delay already long wait times for students and families dealing with discrimination complaints.
    3. DOGE Continues to infiltrate Social Security Administration (SSA). The DOGE team continues to grow at SSA, in what journalists believe to be the largest presence at any agency. Musk and friends have alleged “mass fraud” at the agency, but have not produced any evidence of the claim.

      DOGE is currently considering cancelling benefits for nearly 200,000 people who receive social security benefits without a SSN; however the majority of those are disabled children whose benefits are redirected to a “designated payee” in their parent or guardian.
    4. DOGE takes aim at the Department of Housing and Urban Development (HUD). Under Musk, DOGE targeted HUD for layoffs of around half of the department, which oversees housing vouchers, rental assistance, public housing and a variety of anti-homelessness initiatives, including rebuild grants for communities after disaster.

      HUD also oversees fair housing laws and fields discrimination complaints.

      At least 50% of the US’s unhoused population is disabled.
    5. Senate Finance Committee holds hearing for Dr. Mehmet Oz. TV personality “Doctor Oz” was tapped to be Administrator of the Centers for Medicaid and Medicare Services, and began his hearing Friday.

      He is poised to oversee Medicaid, Medicare, and administrative duties related to the Affordable Care Act as Republicans vow to make deep cuts to the former two programs. Oz sidestepped questions about whether he would protect Medicaid from cuts during Friday’s hearing.
    6. Senate passes a Continuing Resolution for the GOP’s budget bill. Republicans, with the help of 10 Democrats, voted to pass a continuing resolution that avoids a government shutdown until September.

      A coalition of anti-Trump organizers, including the federal workers union, had rallied to encourage Democrats to vote NO, in an effort to bring Republicans to the negotiating table and include language to reign in DOGE’s unfettered slashing of federal programs and employment. Instead, a small group of Democrats helped push the bill through.

      Now that Democrats have ceded their leverage it will be difficult to stop further implementation of Project 2025 or DOGE cuts, beyond lawsuits after the fact.
    7. Texas vs. Beccera 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 for those needing interpreters in hospitals in light of the new English EO.
      The next update is due in April.
    8. Good News… 21 Attorneys General have banded together to sue the administration regarding the illegal firings of Department of Education employees. This comes alongside previously established suits and union actions already in-play for other firings and freezings across the federal workforce.

      A judge also ordered Thursday that probationary employees across multiple agencies who were laid off should be reinstated.

    Action Items:
    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.
    • Call the Senate Finance Committee members and tell them to vote NO on Dr. Oz.
    • 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 you can pivot to creative and local acts of resistance now that elected officials have ceded negotiating power. Here are some ideas.


  • Call Scripts for 13 March Regarding Budget Resolution and Illegal DoED Layoffs

    Call Scripts for 13 March Regarding Budget Resolution and Illegal DoED Layoffs

    Script for Calling Your Senator (*Time Sensitive*–they must vote by Friday, 314)

    Find your Senator’s phone number here

    Hello Senator [last name],

    My Name is [full name] and I’m a constituent calling from zip code [your zip code] to ask you to vote NO on the budget bill until there are firm guardrails in place that take financial control from DOGE and return it to Congress, as stipulated by the Constitution.

    The executive overreach of freezing Congressionally-approved spending and firing federal workers is illegal and dangerous.

    I understand concerns about the impacts of a temporary government shutdown, but the government is not currently functioning by the rule of law. Giving Republicans free reign to gut Medicaid and SNAP will harm even more Americans. Please use this moment of leverage to stand with the American people and the Constitution, and vote NO unless enforceable protections are implemented. Thank you.

    Script for Calling Your House Representative

    Click to find your Representative

    Hello Representative [last name],

    My Name is [full name] and I’m a constituent calling from zip code [your zip code] to ask you to stop the Trump administration from harming students and families by dismantling the Department of Education. By closing key offices and conducting illegal layoffs, Trump and DOGE are trying to bypass Congress to gut the department.

    [Personal statement here] Ex: In particular, I’m a [parent / student / teacher / community member], concerned about about the impact that these cuts will have on students with disabilities, including funding and oversight for programs like [IDEA, 504, Gallaudet, American Printing House for the Blind, Helen Keller National Center, Special Olympics. If applicable, restate importance of program to you or your family.]

    This is an overreach by the executive branch. Please act to protect the students and the federal workers who serve them. Thank you.