Disabled People Are the Canaries in the Coal Mine

Current initiatives at the U.S. Department of Health and Human Services (HHS) are threatening the rights of people with disabilities. They are often the first to be hurt by policies likely to harm others (including the temporarily able-bodied) in the future. As Alice Wong, a prominent disability rights advocate and scholar put it, “We are modern-day oracles. It’s time people listened to us.” Some background explaining why disabled people are like canaries in a coal mine—safety indicators for society as a whole—provides context for a recent panel discussion video posted by New America, a Washington, D.C.-based think tank, detailing the ominous changes at hand. 

According to the Centers for Disease Control and Prevention, more than one in four adults (28.7%) in the United States has a disability—a physical, mental, intellectual, or sensory condition that can be visible or invisible, and can result in activity limitations which, when combined with societal barriers, hinder a person’s participation in daily activities. 

People with disabilities in the United States today are more likely than others to live in poverty and are more likely to be food insecure than others. They also face higher unemployment rates, a 28% higher cost of living, and lower earnings relative to their able-bodied counterparts (74 cents on the dollar). These specific adversities are compounded for disabled people of color. 

The disabled community has responded to the adversities they face by organizing for legal rights that protect their autonomy and access to public life. Section 504 of the Rehabilitation Act of 1973 was the first federal civil rights law prohibiting discrimination against individuals with disabilities in programs receiving federal financial assistance. The Americans with Disabilities Act of 1990 (ADA), and its subsequent 2008 revision, expanded these protections. And the historic 1999 Olmstead v. L.C. ruling, written by Justice Ruth Bader Ginsburg for the Supreme Court majority, held that “[u]njustified institutionalization of persons with mental disabilities…is discrimination.” In 2024, the HHS’ Office for Civil Rights passed a final rule to strengthen the implementation of section 504 of the Rehabilitation Act. This rule codified and clarified the existing requirements that community-based services be provided in the most integrated setting possible. 

While this ruling was in line with the 1999 Olmstead ruling, Texas and 16 other states filed a lawsuit in 2024 challenging the U.S. Department of Health and Human Services’ final rule implementing Section 504 of the Rehabilitation Act, arguing that the agency exceeded its authority and that such policy changes must come from Congress. These states also challenged a HHS clarification that gender dysphoria qualifies as a disability under section 504.  

The 2024 presidential election put HHS under the direction of Robert F. Kennedy, reversing its priorities. In 2025, the agency proposed new rules that covered discrimination against people with gender dysphoria and efforts to prevent trans adults and youth from accessing care. These revisions to HHS policy motivated some states to drop out of the legal effort to challenge requirements for community-based services. 

However, in January 2026, nine states (Texas, Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, and South Dakota) filed an amended complaint to formally challenge the rules passed in 2024. They claimed that these rules exceed the scope of previous legislation, and that states should be the arbiters of “how best to care for their disabled citizens.” If their complaint proves successful, states will have more latitude to deny a disabled person’s right to integration in public life. 

The effects of these legal challenges have been worsened by federal funding cuts. On July 4, 2025, President Donald Trump signed into law the most significant rollback of federal health care funding in U.S. history. The Congressional Budget Office (CBO) estimates that HR1, previously known as the “One Big Beautiful Bill Act,” will cut over $1 trillion dollars from federal health programs and lead to 10 million people losing their health insurance. Over half of disabled adults aged 18–64 living in the community (not institutionalized or housed in segregated facilities) rely on public health insurance coverage.  Loss of insurance coverage not only threatens their health—it may also aggravate their disabilities and cause new disabilities in others. In addition to a trillion dollars in funding cuts, HR1 also ramps up eligibility checks for Medicaid, as well as rollbacks of staffing standards for nursing homes—including removing the requirement for a registered nurse onsite 24/7. 

Most long-term care funding comes through Medicaid, and many disabled people and older adults rely on Medicaid-financed Home and Community-Based Services (HCBS) to stay in their homes and communities. These services provide everything from daily living support (bathing, getting dressed, household chores, etc.) to medical care (private and skilled nursing, as well as physical, occupational, and other therapies), medical equipment (ramps, lifts, assistive technologies, etc.) and community-based health care (education services, day habilitation, caregiver training). Medicaid HCBS funds numerous community services that would otherwise go unpaid or be provided in an institutional setting. Over 7.8 million people with disabilities and older adults rely on HCBS to stay in their homes and communities, maintain their autonomy, live independently, and stay out of institutions. HCBS programs usually cost less than half as much as institutional care and are preferred by 87% of disabled people and older adults. 

States are not currently required to fund HCBS for Medicaid enrollees and can cut resources to these programs at will. About 51% of optional state spending on Medicaid services goes to HCBS, putting the program at significant risk from federal budget cuts, which will come into effect in 2027.  

So, the canaries in our nation’s coal mine are under threat. What does that mean for everyone else, and what is there to do? Numerous organizations focused on disability rights are fighting to rescind harmful policies and shore up the rights of disabled people around the country. The National Association of the Deaf recently fought to reinstate American Sign Language interpretation in White House press briefings after they were removed in January 2025. The Disability Rights Education & Defense Fund (DREDF) is urging congress to halt funding to Immigration and Customs Enforcement (ICE) and Customs and Border Protection (CBP) because of the significant harm they pose to disabled people and their communities. The Autistic Self Advocacy Network (ASAN) is calling for action against the Safeguard American Voter Eligibility (SAVE) Act, which will make it more difficult for disabled people to register to vote. 

The New America panel calls for political pressure to rescind HR1 and make HCBS funding mandatory. On a broader level, the panel emphasizes the importance of building inclusive communities with disabled people, making sure your community is accessible, and listening to the canaries. After all, some folks eventually found a way to revive the little birds that signaled danger in the mines.

Paige Carmichael (she/her) is a Ph.D. student in Economics at the University of Massachusetts, Amherst with a primary focus on the political economy of disability.