Little Lobbyists Statement: Lawmakers Must Repeal Changes to Health Care Provisions in H.R. 1

Media Contact: comms@littlelobbyists.org

Washington, D.C. (September 22, 2025) — Little Lobbyists joins organizations who are members of the Disability and Aging Collaborative (DAC), the Health and Long Term Services and Supports Taskforces of the Consortium for Constituents with Disabilities (CCD), and allied organizations who write to urge the swift passage of the Protecting Healthcare and Lowering Costs Act of 2025 to repeal all of the health care provisions in H.R. 1 and make permanent the enhanced Advanced Premium Tax Credits for purchasing marketplace health insurance plans and similar legislation to repeal the harmful cuts to Medicaid included in H.R.1.

The Disability and Aging Collaborative is a coalition of approximately 60 national organizations that work together to advance long-term services and supports policy at the federal level. Formed in 2009, DAC was one of the first coordinated efforts to bring together disability, labor, and aging organizations. The Consortium for Constituents with Disabilities is the largest coalition of national organizations working together to advocate for federal public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all aspects of society, free from discrimination. DAC and CCD have a longstanding history of supporting people with disabilities and aging adults who need care, along with the family caregivers and care workers who provide that care. 

The undersigned organizations urge you to pass the Protecting Healthcare and Lowering Costs Act of 2025 (S. 2556/H.R.4849) or similar legislation to repeal the harmful cuts to Medicaid in H.R. 1 to protect the health care of millions of Americans, restore Medicaid, Medicare, and Affordable Care Act (ACA) funding and programs, and protect millions of low and middle income Americans by making the enhanced premium tax credits permanent. H.R.1 will take health coverage away from at least 10 million people, and millions of older adults and people with disabilities will be terminated from Medicaid, including people dually enrolled in Medicare. If Congress allows the Advanced Premium Tax Credits to expire, the number of people who will become uninsured rises to 14 million. Already, hospitals and clinics are closing, at least 3 states have announced reduced Medicaid provider rates (Idaho, Colorado, and North Carolina), and insurance companies are requesting skyrocketing premium increases. H.R.1 will do irreparable harm to millions of people with disabilities and older adults, and we urge Congress to act to prevent these harms. 

H.R. 1 guts home and community-based services (HCBS), ripping critical care away from people with disabilities and older adults who want to remain in their own homes and communities.

By restricting states’ ability to increase and direct provider and insurer taxes and state-directed payments to fund their own Medicaid programs, H.R. 1 will have devastating consequences for the 7.8 million older adults and people with disabilities who rely on Medicaid for home and community-based services (HCBS). Neither Medicare nor private insurance meaningfully covers long-term care, leaving people with disabilities, older adults, and family caregivers with only two options when care needs arise – enrolling in Medicaid or paying tens or hundreds of thousands of dollars out of pocket. Medicaid pays for 70% of all HCBS, including paying the wages of direct care workers and paying for some family caregiver supports that are desperately needed. 

When Medicaid funding is reduced, states must continue to offer mandatory services, such as nursing facility care, forcing states to cut optional services like HCBS. The vast majority of optional Medicaid spending (86%) is spent on services that support people with disabilities and older adults. More than half of all optional Medicaid spending is spent on HCBS. Every single state cuts funding for HCBS during budget shortfalls by reducing the number of people with disabilities and older adults who receive services, reducing per-participant spending on HCBS waivers, or both. 24 states cut the number of people who received services or reduced per-participant spending by at least 20% for one or more HCBS waivers. Decreasing the number of participants and per-participant spending results in fewer hours of care for people who need care most, service reductions, and even more people on waiting lists for HCBS. 

The long-term care system is already in crisis, with significant workforce shortages due to low wages and limited benefits, a rapidly aging population, and more than 710,000 people with disabilities and older adults on waiting lists for Medicaid HCBS, often waiting years for care. Direct care workers are among the most underpaid workers in the US, earning just $25,000 annually, and 49% rely on public assistance to make ends meet, including Medicaid. More than 40% of adults in the US, 105 million people, are family caregivers. The cuts to HCBS that H.R. 1 imposes will mean direct care workers getting paid less and leaving for different jobs, family caregivers leaving the workforce and experiencing significant financial strain to provide care, and people with disabilities and older adults ending up in costly institutional settings or going without care entirely.

Despite claims to the contrary, people with disabilities, older adults, family caregivers, and direct care workers will lose coverage and care because of H.R. 1.

Cutting more than $1 trillion from Medicaid, Medicare, and the ACA will inevitably mean that people with disabilities, older adults, family caregivers, and care workers will have coverage and care taken away. While Medicaid covers the needs of many, people with disabilities and older adults make up 1 in 5 Medicaid enrollees but more than half of Medicaid spending. This law stalls efforts to help older adults and people with disabilities who are eligible for Medicaid enroll in and keep their coverage. As a result, H.R. 1 rips Medicaid away from millions of older adults and people with disabilities enrolled in Medicare, making Medicare unaffordable, increasing out-of-pocket costs and preventing access to HCBS, transportation to doctor’s appointments, as well as dental, vision, and hearing services that Medicare does not provide. 

Additionally, people with disabilities, older adults between 50 and 65, family caregivers, and direct care workers will get caught up and lose coverage when more than a quarter of expansion enrollees become uninsured because of the work requirements in H.R. 1. Many people with disabilities qualify for Medicaid through expansion because the traditional disability pathway is strict, narrow, and excludes many people with disabilities. While exemptions are written into H.R. 1 for people with disabilities, the exemptions are ill-defined, and states will struggle to automatically or easily identify all of these populations. Processes to prove disability or serious or complex medical disorders are often inaccessible. For new Medicaid expansion applicants, H.R. 1 requires applicants to prove upfront that they are working or should be exempt, leaving people with disabilities in a catch-22 where they must see a medical professional to prove disability, but cannot afford to visit a provider without health insurance. 

The work requirements provisions will also disproportionately punish direct care workers. For family caregivers, there is no database or way for states to automatically identify family caregivers. When caregivers can’t access health care, the people with disabilities and older adults they care for are also harmed. Even for those fully exempt, like people over age 65 and people with disabilities enrolled through non-expansion pathways, work requirements significantly burden the Medicaid system. The number of Medicaid applicants waiting more than a month and a half for their applications to be processed nearly tripled in the first year of Georgia’s Pathways to Coverage.

H.R. 1 terminates Medicare, Medicaid, and premium tax credit eligibility for certain immigrants who are lawfully present. Most of the people who will have their Medicare coverage taken away are older adults who have lived and worked in the U.S. for decades, paying Medicare taxes. Many of them are women of color who have worked as direct care workers for U.S. Citizens.

Even for people who are not enrolled in Medicaid, H.R. 1 will cause irreparable harm. When one of the 330 at-risk hospitals close because of Medicaid cuts, it is not only Medicaid enrollees who lose access to critical care, but the entire community. By significantly increasing the deficit, H.R. 1 triggers Medicare sequestration, imposing $536 billion in Medicare cuts over the next 9 years. If Congress does not act and pass the Protecting Healthcare and Lowering Costs Act of 2025 or another extension of the expiring Advanced Premium Tax Credits, premiums will increase significantly for more than 20 million people with low or middle incomes and 4.2 million additional people will become uninsured, further pushing people into medical debt, increasing uncompensated care, and putting additional strain on the entire healthcare system. These massive cuts and harms cannot stand, and Congress must act.

Conclusion 

H.R. 1 will be catastrophic for millions of people across the U.S., and the effects are already being felt. People with disabilities, older adults, their families, and millions of people across the US are already struggling to make ends meet and struggling to pay tens or hundreds of thousands of dollars for care, and implementing H.R. 1 will only make affording and accessing care even more difficult. We implore Congress to act now to pass the Protecting Healthcare and Lowering Costs Act of 2025 to repeal the entirety of the health provisions in H.R. 1 or similar legislation to repeal the harmful Medicaid cuts and to permanently extend the enhanced APTCs to mitigate the impending cost crisis. For additional information or any questions, please feel free to contact Tory Cross at tory@caringacross.org.