What U.S. Disability Advocates Are Doing amid Cuts to Critical Federal Assistance Programs

Congress’ passage of the One Big Beautiful Bill Act (OBBBA) last summer set in motion a flurry of activity by both state policymakers and civil society to address the unprecedented cuts to Medicaid and other federal assistance programs, on which tens of millions of Americans rely to live healthier, more economically secure lives. Medicaid supports early diagnosis and treatment, improves long-term outcomes for children, reduces health inequities, and delivers high-quality, cost-effective care for nearly 80 million people across the lifespan (including 2 in 5 children and more than 40% of births). As such, Medicaid represents the largest source of federal funding for states, making up on average about one-third of each state’s total budget.

Medicaid is also the backbone of the United States’ interconnected federal and local service delivery systems for adults with intellectual disabilities. More than 1 in 3 Americans with disabilities have Medicaid. Critically, states’ Medicaid-funded Home and Community-Based Services (HCBS) waiver programs help persons with disabilities and older persons stay in their own homes and communities by providing an individualized array of services that may include personal assistance, home care, supported employment, respite care, non-emergency medical transportation. Despite the cost-effectiveness of HCBS, Medicaid law does not require states to provide HCBS, unlike other Medicaid-funded services. This means that states will likely scale back, if not disband, HCBS and other Medicaid-funded programs to make up for budgetary shortfalls.

As U.S. legal and policy landscape governing persons with disabilities’ access to community-based services continues to evolve, understanding the critical intersections of federal and state rules will be essential for attorneys, policymakers, self-advocates, and families alike. Thus, as part of the National Federation for the Blind's annual Jacobus tenBroek Disability Law Symposium, HPOD organized a workshop to provide attendees with timely updates on national- and state-level developments as well as concrete action steps that stakeholders may take to address mounting challenges to persons with disabilities’ continued community inclusion. In this way, workshop participants had an opportunity to better understand not only the stakes of seismic shifts in the disability service sector, but also their potential role as advocates for HCBS recipients with disabilities.

Seismic Shifts in Support Systems

As outlined by Nicole Jorwic, Chief of Advocacy and Campaigns, Caring Across Generations, the OBBBA will force states to make drastic changes to HCBS programs, by covering fewer individuals, limiting benefits, and reducing payments to providers, among other means. Although the OBBBA calls for phasing in changes to federal assistance programs, many states have already begun reforming their Medicaid HCBS programs in order to comply with the OBBBA.

For example, Idaho’s governor proposed eliminating dental benefits for Medicaid recipients to cope with federal funding shortfalls, even though studies show these benefits had generated significant savings for the state by reducing emergency room visits. The governors of Utah and Missouri have also proposed cuts to their states’ HCBS programs. California has proposed delaying a promised rate increase to address the growing workforce shortage. As a cost cutting measure, New York made a private equity-owned corporation the sole fiscal intermediary for the state’s self-directed Medicaid HCBS program, resulting in workers and care recipients leaving the program. In Maryland, the governor has proposed cuts to the Developmental Disabilities Administration, which helps administer Medicaid HCBS waivers that deliver caregiver support, transportation, and respite care for people with disabilities and their families. At the same time, across the states privately run direct care worker agencies, day programs, and other providers are considering closing their doors because they cannot afford to continue providing care.

Without action, states will face similar pressures year after year as federal changes take effect. That’s why stakeholders across the country are actively engaging their state policymakers to mitigate the harmful effects of changes that will reduce the scope of HCBS programs. For example, Colorado’s Governor recently announced potential cuts to programs that support people with disabilities with services such as cleaning and cooking, as well as outings that promote engagement in community-based settings and hour caps and rate reductions for family caregivers. However, for the moment, in the face of powerful testimony from affected families, the Governor has ordered a pause to implementing these changes. Similarly, in Nebraska advocates successfully stopped the state from cutting the Aged and Disabled Waiver which supports independent living, while in North Carolina, the Governor, in the face of public outcry, eventually rolled back a legislature’s refusal to take action.

In some states, stakeholders have been able not only to oppose harmful measures but also to spur state policymakers to innovate salutary measures to shore up their Medicaid programs while balancing state budgets. For example, New Mexico has established a Medicaid Trust Fund as a bulwark against federal cuts and expanded state officials’ authority to protect residents’ health care coverage if future federal action reduces their access to Medicaid. Michigan’s governor has proposed new and increased taxes on gaming, nicotine products, and digital advertising to help close the state’s $1.8 billion budget deficit created by the OBBBA and protect care for people who rely on Medicaid across the state. In Washington, state lawmakers are considering a new tax on annual earnings above $1 million, which is projected to raise $3.5 billion for the state annually to address federal funding shortfalls.

Emerging Avenues for Advocacy

Over the past year, disability groups have mobilized in response to threats to longstanding U.S. disability laws and policies. For example, advocates successfully urged attorneys general in 8 states to withdraw from a lawsuit challenging federal rules that require states to deliver disability services in the most integrated setting.¹ This year, federal lawmakers delivered the disability community a key win by adopting a spending package that effectively blunts attempts to eliminate or diminish long-standing disability laws, policies, and programs.

Numerous disability groups are helping to meet this moment in Medicaid by disseminating easy-to-understand information about what disability community members and their allies can do. Importantly, although OBBBA will burden Medicaid recipients with new work requirements and more frequent eligibility redeterminations, it does not alter federal legal requirements protecting against disability-based discrimination. The Bazelon Center for Mental Health Law and the Corporation for Supportive Housing have published a plain language explainer emphasizing that states may not violate federal antidiscrimination laws in the course of navigating federal funding shortfalls. For example, for many Medicaid recipients, states must assist individuals in need of accommodations to collect and submit additional documentation for more frequent eligibility determinations or to prove they are exempt from work requirements. The toolkit encourages states to use a broad standard to determine whom to provide assistance, as well as the kinds of assistance it offers, so as to avoid inadvertently violating the rights of individuals seeking to comply with new Medicaid eligibility rules.

Other groups have developed materials to aid Medicaid recipients in understanding the changes in their states’ Medicaid HCBS programs they should expect. The Arc has developed state-by-state factsheets describing how federal cuts to Medicaid and SNAP may affect states programs. For example, 342,575 people in Texas are on a waitlist to receive Medicaid home and community-based services. When there have been federal Medicaid cuts in the past during the Great Recession, Texas implemented a 13% reduction in services. Groups like Justice in Aging have prepared advocacy toolkits that disability community members and their allies may use to inform state-level processes to comply with OBBBA. National Health Law Program’s (NHeLP) new Medicaid Access Strategies Hub similarly aims to be a clearinghouse of resources for advocates and policymakers alike.

Crucially, members of the disability community are coalescing and coordinating to advance strategies to mitigate the harms caused by these unprecedented cuts. Together with Self Advocates Becoming Empowered and the National Black Disability Coalition, TASH’s Medicaid Advocacy Project will coordinate with disability, aging, and workforce coalitions for unified advocacy. As described at HPOD’s workshop by Mike Brogioli, TASH’s Executive Director, this multi-pronged initiative will include: (1) an online advocacy portal to facilitate rapid-response advocacy and mobilize stakeholders to respond to proposed changes to disability service systems, (2) a storytelling campaign to help raise public awareness of the real-life impacts of HCBS on independence and community living, and (3) grassroots policy education sessions to equip self-advocates and their allies with “Medicaid HCBS 101”-style offerings to build their capacity for informed advocacy.

Preparing for a Dramatically Altered Service Landscape

Realistically, state-level advocacy efforts may only achieve so much. It is unlikely that states will manage to completely insulate persons with disabilities from the effects of the $990 billion in cuts to Medicaid and other federal assistance programs on persons with disabilities disproportionately rely. Thus, while there is a critical role for continued advocacy to limit the effects of Medicaid cuts, as a practical matter, HCBS recipients with disabilities and their families and supporters would do well to prepare for the additional administrative burden of more frequent eligibility determinations and work requirements, as well as more limited options among providers and services.

As pointed out by HPOD’s Director of Advocacy Initiatives, Hezzy Smith, one way they might do so is by familiarizing themselves with their state’s administrative processes for resolving disputes relating to their Medicaid-funded services. These processes may prove instrumental for individuals affected by the adverse effects of scarcer resources and more burdensome participation requirements.  

Since 2014, federal regulations have required states to implement “person-centered planning” processes” that enable recipients to make informed decisions about both which services and supports they receive and from whom. These regulations, known as the “HCBS Settings Rule” required states to establish a fair hearing process for HCBS recipients to challenge denials, suspensions, reductions, or terminations of services, the timeliness of service delivery, and denials of choice of services or providers. They were updated in 2024 by the “Medicaid Access Rule” to require further that states to establish more accessible and less formal grievance systems for HCBS recipients in fee-for-service programs² to address service quality concerns that may not rise to the level of a fair hearing. Importantly, under this rule states must give recipients “reasonable assistance” to help them make complaints, among other features designed to make this procedure easy for HCBS recipients to access.

In practice, it is less clear how well states’ dispute resolution systems work, including whether HCBS recipients are even aware of them. Further complicating matters is a recent advisory from the Centers for Medicare and Medicaid Services that pushing back a July 9, 2026 deadline for states to bring their grievance systems online until December 31, 2027. While the availability of fair hearing or grievance procedures do not guarantee that HCBS recipients with disabilities will be able to successfully defend against all the changes to their states’ Medicaid-funded HCBS programs, Mr. Smith shared his own experience of assisting his sister to successfully use these procedures to secure both the level of services she needed and reimbursement for overbilling by her service provider without going to court.

Though many HCBS recipients with and without disabilities may struggle navigate these often complex or poorly designed systems, becoming more familiar with administrative dispute resolution procedures now may prepare them to marshal the resources and supports they may require to put them to effective use.