Medicaid Is Under Threat – Here’s What You Need to Know August 28, 2025

June 25, 2025

Written by Joe O’Sullivan, Director of Public Policy & Advocacy

The One Big Beautiful Bill Act (OBBBA) includes massive proposed cuts to Medicaid — threatening essential supports for individuals with intellectual and developmental disabilities (I/DD).

We’re calling on advocates, families, and supporters to help protect these critical services.

👉 Take Action Now: Tell your Senators to protect Medicaid for individuals with I/DD.

📜 What is the One Big Beautiful Bill Act (OBBBA)?

OBBBA is a sweeping budget reconciliation bill tied to President Trump’s domestic agenda. It passed the House by just one vote (215–214). The Senate recently released their version of OBBA which calls for even deeper cuts to Medicaid, which could jeopardize access to home and community-based services for individuals with I/DD.

Here’s what the bill proposes:

Up to $2 trillion in federal spending cuts over 10 years
More than $800 billion cut from Medicaid alone
Significant risks to programs that serve individuals with I/DD

While supporters of OBBBA say it will reduce government waste, critics of the bill argue it is a massive spending increase. The nonpartisan Congressional Budget Office issued a report estimating OBBBA could actually add $2.5 trillion to the national deficit over the next decade. The rising national deficit will limit the resources available for vital services, and could result in major service disruptions if it continues to grow.

🧭 Where does the bill stand in the Senate?

The House and Senate must pass an identical version of the bill for it to become law. The Senate released a new version of OBBBA, which will have to be agreed upon by the House if approved by a full Senate vote. However, Senate Republicans are divided on OBBBA, potentially complicating its approval.

Several prominent Senate Republicans have publicly voiced concerns over the bill, forecasting additional changes possibly being made to OBBBA
Their reasons vary: Some (like Sen. Mike Lee and Sen. Rand Paul) want even deeper spending cuts Others (like Sen. Josh Hawley and Sen. Lisa Murkowski) believe the Medicaid cuts go too far

Since Republicans hold only a 53–47 majority, and can afford only 3 “no” votes, these divisions matter.

The Senate aims to amend and pass the bill by July 4, giving the House time to review it before the mid-August debt ceiling deadline.

🏫 What’s the current state of I/DD services in Illinois?

Even without further cuts, Illinois is struggling to meet the needs of individuals with I/DD. Here’s a snapshot:

16,000+ people are on the PUNS waiting list for services
A growing “shadow list” includes those approved for services — but who can’t find providers due to staff shortages
50,000+ individuals with I/DD rely on aging caregivers over age 60
Serving just 10% of these individuals would require a 50% increase in CILA capacity
250+ individuals remain in state institutions, waiting for community-based services

Further cuts could devastate a system already at its breaking point.

⚠️ What impact could OBBBA have on people with I/DD?

At Clearbrook, over 83% of our funding comes from government sources, primarily Medicaid. Without it, our programs — and those of countless other providers — could collapse.

While OBBBA does not directly cut benefits for individuals with I/DD, the magnitude of these cuts will result in a major regression of home and community-based services for individuals with I/DD.

Here’s what’s at risk if OBBBA passes as written:

Increased re-enrollment red tape: Individuals would have to reapply for Medicaid every 3 months, leading to administrative errors and loss of benefits
Longer waitlists: Already, 700,000+ Americans with I/DD are waiting for services. That number would surge.
Institutionalization: Many would lose access to community services and be placed in costly, less supportive state institutions
Reduced state funding: States would face greater financial burdens, likely resulting in local cuts to services
More pressure on families: Parents and caregivers could be forced to pay out of pocket, cut back work, or take on full-time caregiving, which can be emotionally and financially devastating

📣 Where do we go from here?

The good news: the bill is not final. With enough public pressure, the Senate could amend OBBBA to protect Medicaid and the individuals and families who rely on it.

But we must act — and we must act now.

The I/DD service system is already facing: