How Proposed Cuts to Medicaid and the ACL Threaten Disability Rights in America

How Proposed Cuts to Medicaid and the ACL Threaten Disability Rights in America

May 3, 2025

Posted by

Max Kupperberg

Recent Update: The Congressional Budget Office confirmed that the proposed $880 billion in Medicaid cuts over the next decade would represent a 16% reduction in federal funding—equal to 29% of state-financed Medicaid spending per resident, disproportionately affecting services for people with disabilities.

The proposed federal budget cuts to Medicaid and potential elimination of the Administration for Community Living represent an unprecedented threat to disability rights and community-based services across the United States.

Introduction

For millions of Americans with disabilities, the difference between living in their communities and being institutionalized hinges on federal programs that many citizens know little about. Medicaid and the Administration for Community Living (ACL) form the backbone of supports that enable independent living, community participation, and basic civil rights for people with intellectual and developmental disabilities (I/DD), aging individuals, and their families.

Now, these critical systems face unprecedented threats. Congressional proposals to slash Medicaid funding by $880 billion over the next decade and potentially eliminate the ACL altogether represent more than simple budget adjustments—they threaten to dismantle decades of hard-won progress in disability rights and inclusion.

This isn't merely a policy debate. For those who depend on these services, these cuts would have immediate, life-altering consequences. This article examines what's at stake, who stands to lose the most, and why all Americans should be concerned about these proposed changes.

Medicaid: Far More Than Health Insurance

When most Americans think of Medicaid, they picture a healthcare program for low-income individuals. While this is partially true, Medicaid's role extends far beyond basic medical care, especially for people with disabilities.

The Foundation of Community Living

Medicaid is the primary funder of Long-Term Services and Supports (LTSS)in the United States, particularly Home and Community-Based Services (HCBS). These critical programs enable people with significant disabilities to:

Live in their own homes rather than institutions
Receive personal care assistance for essential daily activities
Access employment supports to maintain jobs
Utilize assistive technology that enables independence
Receive respite care that gives family caregivers necessary breaks

Without these supports, many individuals would face no choice but institutional care—a more expensive and more restrictive option that the Supreme Court's landmark Olmstead decision determined violates civil rights in many cases.

Employment and Economic Participation

For working-age adults with disabilities, Medicaid often provides the only path to meaningful employment. Special Medicaid waiver programs allow recipients to work while maintaining essential benefits that private insurance typically doesn't cover. This creates a pathway to economic self-sufficiency that would otherwise be unattainable.

As Jenny Kramer, a disability rights advocate with cerebral palsy, explains: "Without Medicaid's personal care services, I couldn't get out of bed in the morning, which means I couldn't get to my job. My Medicaid waiver isn't charity—it's what allows me to be a taxpayer."

The Scale and Impact of Proposed Medicaid Cuts

The proposed $880 billion reduction in federal Medicaid spending over the next decade represents a seismic shift in disability policy. This 16% cut in federal funding equals approximately 29% of state-financed Medicaid spending per resident.

What Would These Cuts Mean in Practice?

States, faced with massive funding gaps, would have limited options:

1. Reduce eligibility: Limiting who qualifies for services
2. Cut benefits: Eliminating or reducing services like personal care assistance, employment supports, or assistive technology
3. Lower provider rates: Reducing already-low reimbursement rates for services, further exacerbating workforce shortages
4. Increase waiting lists: Extending already years-long waits for community-based services
5. Shift costs: Raising state taxes or cutting other essential services like education or transportation

The Congressional Budget Office has warned that these cuts would likely result in millions losing coverage entirely, while others would face severely reduced services.

The False Economy of Medicaid Cuts

Research consistently shows that cuts to Medicaid actually cost more in the long run:

Increased institutionalization: When community supports disappear, more expensive institutional care often results
Greater emergency care utilization: Without preventive services, costly emergency interventions increase
Lost tax revenue: When people with disabilities lose employment supports, they often lose jobs and stop paying taxes
Economic ripple effects: Medicaid spending creates healthcare jobs and economic activity that would disappear with cuts

A study by the Commonwealth Fund found that every $1 million cut from Medicaid results in approximately 17 jobs lost in the healthcare sector alone.

State-Level Consequences: A Closer Look

The proposed cuts would affect states differently, but all would face difficult choices with profound consequences.

Texas: An Already Lean System Under Threat

Texas operates one of the nation's most restrictive Medicaid programs, with limited eligibility and services. Further cuts would disproportionately harm low-income women, children, and people with disabilities while shifting costs to local governments and health systems.

According to the Houston Chronicle, Texas hospitals already provide billions in uncompensated care. Medicaid cuts would increase this burden, potentially forcing rural hospital closures and reducing access to care for all Texans.

New York: Facing a $24 Billion Gap

New York State could face a staggering $24 billion funding gap over the next decade. With one of the nation's most comprehensive HCBS systems, New York would likely be forced to dismantle programs that currently enable tens of thousands to live independently.

The Times Union reports that such cuts could devastate the state's Consumer Directed Personal Assistance Program, which allows individuals with disabilities to hire and direct their own caregivers—often family members who would otherwise be unable to work.

Washington, D.C.: $2 Billion Loss Threatens 285,000 Residents

The nation's capital could lose $2 billion in Medicaid funding, endangering services for over 285,000 residents—more than 40% of the District's population. This would threaten hospital financial stability in an area already struggling with healthcare access disparities.

The Administration for Community Living: An Essential Agency at Risk

While Medicaid cuts have received more attention, the potential elimination of the Administration for Community Living (ACL) represents an equally serious threat to disability rights.

What is the ACL and Why Does It Matter?

Established in 2012, the ACL brings together federal efforts to support older adults and people with disabilities under one agency. The ACL:

Administers the implementation of major disability rights laws
Funds and oversees critical programs like Centers for Independent Living
Provides technical assistance to states on community integration
Develops and implements policies that promote inclusion and accessibility
Coordinates aging and disability resource centers
Supports research on effective disability services and supports

Consequences of Eliminating the ACL

The dissolution of this agency would have far-reaching impacts:

Threatened Community Integration

The ACL enables older adults and people with disabilities to live independently by funding programs that provide information, referrals, and direct services. Its elimination would likely lead to increased institutionalization as these coordination functions disappear.

As the National Council on Independent Living notes: "The ACL isn't just another government agency. It's the federal home for disability rights enforcement and the primary architect of policies that have moved us from institutions to communities."

Disruption of Critical Disability Programs

The ACL supports programs specifically designed for people with intellectual and developmental disabilities and their families, including University Centers for Excellence in Developmental Disabilities (UCEDDs) and Protection and Advocacy systems. Its closure would dismantle these critical support networks.

Workforce Development Impact

The direct support professional (DSP) workforce—already facing crisis-level shortages with 50% annual turnover rates—receives development funding through ACL initiatives. Eliminating these programs would worsen existing labor shortages in this already overburdened sector.

Real-World Implications for People with Disabilities

Beyond statistics and policy details, these proposed cuts would have profound effects on real lives. Consider these scenarios:

Scenario Impact of Cuts
Access to Community Living

Maria, a 34-year-old with cerebral palsy, lives independently with 30 hours weekly of personal care assistance funded by a Medicaid waiver.
If Medicaid cuts force her state to reduce services by 30%, Maria would lose 9 hours of weekly support—likely making it impossible for her to continue living independently. The alternative would be a nursing facility costing taxpayers approximately three times more than her current community-based services.
Employment Supports

Robert, a 42-year-old with an intellectual disability, works 25 hours weekly at a local grocery store with the help of a job coach funded through a Medicaid employment waiver.
Cuts to employment support services would likely eliminate his job coaching, putting his employment at risk. Without work, Robert would require more expensive day services and possibly more residential support, increasing costs while reducing his independence and community participation.
Family Caregivers

The Johnsons care for their 16-year-old son with autism and intellectual disability. Medicaid-funded respite care provides 20 hours monthly of professional support.
Loss of respite services would force one parent to leave their job, creating financial strain and increasing reliance on other public assistance programs. Studies show that family caregivers without respite support experience higher rates of health problems, depression, and financial instability—all carrying additional public costs.

The Direct Support Professional Crisis

The disability service system already faces a workforce crisis that would be dramatically worsened by the proposed cuts.

Current Challenges: Direct Support Professionals (DSPs)—the workforce that provides daily support to people with disabilities—face near-poverty wages (median hourly pay of $13.36), extreme turnover (rates exceeding 50% annually), vacancy crisis (over 18% of positions remain unfilled nationally), and limited benefits (most positions offer minimal health insurance or paid leave).

The Impact of Proposed Cuts

Medicaid reductions would further strain this system by:

• Forcing providers to lower already-inadequate wages
• Eliminating training and retention initiatives
• Reducing benefits and working conditions
• Increasing caseloads for remaining staff

The American Network of Community Options and Resources (ANCOR) has warned that even a 5% reduction in Medicaid funding could eliminate over 100,000 DSP positions nationwide—positions that cannot be automated or outsourced due to their hands-on, personal nature.

The Civil Rights Dimension

While budget discussions often focus on dollars and cents, the proposed cuts represent a fundamental civil rights issue.

Olmstead and the Right to Community Integration

In 1999, the Supreme Court's Olmstead v. L.C. decision established that unnecessary institutionalization of people with disabilities constitutes discrimination under the Americans with Disabilities Act. This landmark ruling affirmed that people with disabilities have a right to receive services in the most integrated setting appropriate to their needs.

The proposed Medicaid cuts directly threaten states' ability to comply with Olmstead. Without adequate funding for community-based services, states would likely be forced to rely more heavily on institutional settings—a clear regression in disability rights.

A Question of Values

At its core, this debate reflects competing visions of disability in America:

• Are disabilities merely medical conditions to be managed at minimum cost?
• Or do people with disabilities deserve full inclusion, participation, and self-determination?

As disability rights advocate Judy Heumann often stated: "Disability only becomes a tragedy when society fails to provide the supports and accommodations that allow us to participate fully."

The proposed cuts suggest a troubling retreat from the bipartisan consensus that has supported community integration and disability rights for decades.

What Can Be Done: Advocacy and Action

In the face of these threats, advocacy becomes essential. Here's how concerned citizens can respond:

Stay Informed

• Follow updates from disability advocacy organizations like The Arc, the National Council on Independent Living, and the Consortium for Citizens with Disabilities
• Understand your state's specific Medicaid programs and how cuts would affect them
• Learn about the real experiences of people with disabilities in your community

Contact Your Representatives

• Call, email, or visit your congressional representatives
• Share personal stories about how Medicaid and ACL programs impact you or your loved ones
• Attend town halls and public forums to raise these issues

Build Coalitions to Protect Disability Rights

The proposed cuts would affect diverse groups including:

• People with all types of disabilities
• Older adults
• Family caregivers
• Healthcare providers
• Direct support professionals
• State and local governments

Building coalitions across these stakeholders creates powerful advocacy.

Conclusion: Beyond the Budget

The debate over Medicaid and the ACL transcends typical budget negotiations. It represents a fundamental choice about what kind of society we want to build—one that values independence, inclusion, and rights for all citizens, or one that retreats from these commitments.

As we consider these proposed cuts, we must ask ourselves: What are the true costs of dismantling systems that enable millions of Americans with disabilities to live with dignity and independence? And are those costs—human, social, and ultimately economic—ones we're willing to bear?

For people with disabilities and their families, these aren't abstract policy questions. They're matters of basic freedom, opportunity, and civil rights—the very values that define the American experience.

[Author's note: This article was written based on proposed cuts and policy changes as of May 2025. For the most current information, please consult disability advocacy organizations and official government sources.]

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