We’re Not Line Items

Medicaid is more than a health insurance program. For millions of Americans, it is a lifeline that supports independence, health, and dignity. With the passing of the Big Beautiful Bill, that lifeline is not secure. The bill includes significant cuts to Medicaid funding, stricter eligibility requirements, and additional work requirements that could deprive disabled people and their families of crucial services they rely on every day.

One of those families is the Rice family in Utah. Their 10-year-old daughter, June, lives with serious medical conditions and requires 24-hour care. Her parents both work and they have two other children. Medicaid’s home and community-based services allow June to stay at home with her family. Without this support, she would likely be institutionalized, something her parents have worked hard to avoid. 

Medicaid provides the aides, therapies, and nursing care that allow June to live a better life. Losing that care could mean losing her ability to live at home, and therefore losing the stability her parents have fought to maintain.

June’s story is just one of many. Rob Stone, 28, a disability rights advocate in Maryland, relies on two state Medicaid programs for nursing and other assistance to manage a rare form of dystonia linked to Parkinson’s disease. He said, “I don’t want to just survive. Medicaid helps me live a fulfilling, independent life in my community. I should be able to control my own life, just like anyone else.” Rob’s independence depends on Medicaid-funded care that helps him manage daily tasks and participate fully in his community.

Like Rob and June, I am another person who will be impacted by this bill. As a person with cerebral palsy, Medicaid impacts me every single day. Medicaid allows me to live in my apartment where I receive around-the-clock care. 

In my case, Massachusetts Medicaid is especially important because it provides the funding for my PCAs (Personal Care Assistants). My PCA helps me with activities of daily living, including bathing, dressing, and toileting. Without Medicaid, I wouldn’t be able to pay for PCA services, which cost more than $60,000 annually. 

Home and community-based services have existed since 1981. In August 1981, then-President Ronald Reagan signed a bill into law that authorized the creation of state-level programs to assist disabled people in living outside of institutions such as nursing homes. 

Today, approximately 4.5 million Americans receive Medicaid-funded home and community-based services as an alternative to institutionalization.  Typically, home and community-based services are more cost-effective than institutional care.

The Center for Medicare and Medicaid Services estimates that home and community-based services cost 50% less than institutional care.  In 2020,  KFF found that the average annual cost per person for home and community-based services averaged slightly more than $36,000, whereas institutional costs averaged more than $47,000.

Advocates warn that the home and community based services are among the first to be cut because they are optional Medicaid programs. These home and community-based services allow people to live outside of nursing homes and institutions. When budgets are tight, these programs are vulnerable to reductions or elimination, putting independence at risk for thousands.

The bill cuts $1 trillion from Medicaid over ten years. It requires most adults between ages 19 and 64 to prove they work at least 80 hours each month to maintain coverage. While people with documented disabilities are officially exempt, that does not guarantee protection. Stricter eligibility reviews, cuts to home and community-based services, and reduced funding for nonprofits that assist people and families could still cause many to lose care.

This has already happened during past funding crises. In 40 states there are long waiting lists. Families are often forced to choose between quitting jobs to become caregivers or placing loved ones in nursing homes or institutions. As nonprofits also lose funding and employees, fewer people will be able to access or fight for the services they need.

According to KFF, which was formerly known as the Kaiser Family Foundation more than 710,000 people were on Medicaid home- and community-based services (HCBS) waiting lists in 40 states as of early 2024. This represents a 2.6% increase over the previous year, demonstrating an increasing demand for these services.

Disabled people do not want special treatment. They want to live safely, with dignity, in their homes and communities. Medicaid is one of the only reasons that has been possible. Now, that care is at risk.

Some lawmakers expressed concern about the scale of the cuts, but the bill still passed largely along party lines. Now it is up to states to decide how and where to reduce services. That means care will vary widely depending on location.

The numbers behind this bill represent millions of people whose daily lives hang in the balance. We are not just line items in a budget sheet. For many, the ability to get dressed, eat, or live in their community depends on this program. These people are not statistics; they are children like June and adults like me. We rely on a system that is being dismantled. What’s at stake is more than just funding. These cuts could kill people.

Sources:

Astor, Maggie. “Disabled Americans Fear What Medicaid Cuts Could Do to Them.” The New York Times, The New York Times Company, 21 July 2025, https://www.nytimes.com/2025/07/21/well/medicaid-bill-disabled-americans.html.

Burns, Alice, et al. “A Look at Waiting Lists for Medicaid Home and Community-Based Services from 2016 to 2024.” KFF, 31 Oct. 2024, http://www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-medicaid-home-and-community-based-services-from-2016-to-2024/.

Chidambaram, Priya, and Alice Burns. “How Many People Use Medicaid Long-Term Services and Supports and How Much Does Medicaid Spend on Those People?” KFF, 14 Dec. 2023, http://www.kff.org/medicaid/issue-brief/how-many-people-use-medicaid-long-term-services-and-supports-and-how-much-does-medicaid-spend-on-those-people/.

Gunn, Erik. “Medicaid Turns from a Lifeline to a Question Mark for Woman with Chronic Illness.” Wisconsin Examiner, States Newsroom, 21 July 2025, https://wisconsinexaminer.com/2025/07/21/medicaid-turns-from-a-lifeline-to-a-question-mark-for-woman-with-chronic-illness..

Maniates, Hannah. “Why Did They Do It That Way? Home and Community-Based Services.” National Association of Medicaid Directors, 16 Apr. 2024, medicaiddirectors.org/resource/why-did-they-do-it-that-way-home-and-community-based-services/.

Métraux, Julia. “Trump’s War on Medicaid Will Institutionalize Millions of People.” Mother Jones, 31 Jan. 2025, www.motherjones.com/politics/2025/01/trump-medicaid-institutionalization-hcbs-cuts-gop/.