By Kamaria Kali, Search Inc. Administrative and Development Assistant

How Medicaid Funding Impacts Adults with IDD 

At JJ’s List, we know that with the uncertainty of today’s political climate, many are feeling unsure about their healthcare coverage. With the population we support, our team knows that Medicaid is a lifeline. Cutting Medicaid would cause irreparable harm to the millions of adults living with intellectual and developmental disabilities (I/DD) across the country. To help shed light on this important topic, we have outlined the basics of Medicaid, its importance and the potential impacts. Read on to learn more: 

What is Medicaid? 

In 1965, Title XIX of the Social Security Act was signed into law. This law created Medicaid and Medicare, providing health care coverage to low-income Americans and seniors. In 2014, the Affordable Care Act, signed into law by President Barack Obama, allowed states to expand coverage to include all low-income adults under 65. Medicaid provides health care to about 86 million Americans, including 3.3 million Illinoisians. According to KFF, 77% of Americans have a “very favorable” or “somewhat favorable” view of Medicaid.  

Adults with I/DD 

In 2020, there were approximately 8.38 million people in the United States with an intellectual or developmental disability, with 2.28 million being adults over the age of 21. People with I/DD often face systemic barriers that hinder their ability to live full and meaningful lives in their communities. A significant way to ensure they have all the support they require is through Medicaid and Home and Community Based Services waivers. According to HFS, adults with I/DD need to have an “Adults with Developmental Disabilities” waiver. This program entitles someone to the following services: Adaptive Equipment, Assistive Technology, Behavior Intervention and Treatment, Community Day Services, and many more. 

The HCBS Waiver is a program that allows people with IDD to live in their own homes with help or in Community Intergrated Living Arrangements (CILA). This program offers freedom for people to live independently while receiving the services they need. 

Illinois I/DD Spending 

Last fiscal year, Illinois received over $20 billion from the federal government for Medicaid and spent $33.3 billion. While this is an impressive number, when it comes to how much the state spends on individuals with disabilities, there is more work to do. Illinois is in the bottom three states of spending on individuals with disabilities in the USA. The divide between the top and bottom states is stark and shows that any cut to Medicaid would be devastating to the people and families that rely on it. 

*Disability is based on the Social Security Administration’s (SSA) definition of disability, which involves a significant impairment that prevents substantial gainful activity and is expected to last at least 12 months and meet income and asset requirements.   

*No data is available for Mississippi and West Virginia. 

The Future of Funding 

While there is always a need for oversight and budget reconciliation, indiscriminate cuts to vital programs will only hurt those who rely on these services. A cut to Medicaid would impact thousands of Illinoisians with I/DD and their family members. If federal funding for Medicaid dips below 90%, a trigger law would be enacted that would end coverage for approximately 860,000 people.  

As of March 11, 2025, the White House has released a fact check refuting the claim that the Trump administration will cut Medicaid benefits. We will remain vigilant if anything changes.  

What’s Next? 

Healthcare advocates are sounding the alarm about what cuts to Medicare would mean for the state. 3.4 million low-income people in Illinois rely on Medicaid for coverage, resulting in strain in Illinois. To make sure that this does not happen, reach out to your local Congressional Representative and Senator to let them know that cuts to Medicaid would have a negative impact on adults with IDD. To learn who your representatives are, click here to find out. 

Interested in staying involved in advocacy for people with I/DD? Sign up for Search’s Advocacy Alerts here. 

Resources: 

Illinois Services for People with Intellectual and Developmental Disabilities by the Numbers 2023 

Medicaid’s Impact in Illinois: What We Stand to Lose 

Medicaid Services for People with Intellectual or Developmental Disabilities – Evolution of Addressing Service Needs and Preferences 

Plain Language: Medicaid Services for People with Intellectual or Developmental Disabilities – Evolution of Addressing Service Needs and Preferences 

Sources: 

7 Charts About Public Opinion on Medicaid 

10 Things to Know About Medicaid 

Adults with Developmental Disabilities 

Age of People with IDD in the US 

Data about IDD and Health 

Eligibility 

FACT CHECK: President Trump Will Always Protect Social Security, Medicare 

Home and Community Based Services Waiver 

Illinois lawmakers brace for possible federal cuts to Medicaid 

Medicaid Financing: The Basics 

Medicaid Spending per Full-Benefit Enrollee by Enrollment Group 

Medicaid Program Description and Legislative History 

People with IDD in the United States 

Program History and Prior Initiatives 

Quality of Life 

Understanding Medicaid 

What Illinois faces if congressional Republicans slash Medicaid    

What’s the difference between Medicare and Medicaid?