Medicaid Insights
Medicaid is the most essential health program for people with disabilities, one that offers direct support for the care that keeps people with disabilities living in their communities. There are multiple eligibility pathways for people with disabilities to qualify for Medicaid coverage, including traditional Medicaid, Medicaid expansion and Medicaid Buy In. Medicaid Buy In Programs are for people who are working, and they provide access to needed services like HCBS for those who make above the earned income limit. Eligibility programs vary by state. As a secondary benefit, Medicaid allows family members of people with disabilities and older adults to stay employed when their loved ones need long-term care. It can also support families staying together, when caregivers themselves may have physical limitations to providing the care that’s needed. This program is the primary payer for HCBS long-term supports, covering two-thirds of these services in recent years. Even though the program is essential in making independent community living possible, HCBS is considered an optional benefit under federal law, meaning states are left to determine how the program is offered. By July 2027, the Centers for Medicare and Medicaid Services (CMS) will start requiring states to publish lists of their HCBS waiting lists, as an important step towards reducing the wait for services.
Unfortunately major changes are pending since the passage of the July 2025 reconciliation bill (H.R. 1) that will further reduce access to HCBS and care through Medicaid. There are also states facing the withholding of Medicaid funds in response to allegations of fraud. HR.1 calls for upwards of $1 trillion in federal Medicaid cuts over 10 years. People with disabilities are bracing for the impact of these cuts, which may result in more people moving into nursing home facilities, rather than staying in their homes. It may also be a challenge for people with Long COVID to continue to retain Medicaid coverage with increased administrative burdens to retain care. Others may continue to live in their homes, assuming they have the support of unpaid family and community caregivers. New enrollees attempting to enroll in Medicaid for HCBS coverage may be turned away in order for states to preserve services for existing enrollees. We will continue to track how these developments impact state Medicaid programs over the year ahead, since cuts are not scheduled to go into effect until December 2026.
The Autistic Self Advocacy Network (ASAN) offers plain language and easy read guides on Medicaid that can support your engagement with disabled consumers, including a brief on what might be happening to Medicaid as part of a broader effort to defund it. These resources can help you explain the program and how its changing with the people you support as they seek coverage and care. We will continue to cover how state Medicaid programs are affected by work requirements forthcoming in late 2026. Stay tuned for resources on how to support enrollees with continuing coverage.
Please note: Enrollees may want to be informed of the implications of the new Medicaid data sharing agreement between the Centers for Medicare and Medicaid Services (CMS) and Immigration and Customs Enforcement (ICE). Immigrant families will especially have questions about this program, which could expose sensitive data including a person’s address, telephone number, banking information, email or IP address. Demographic information related to sex, ethnicity, and race may also be vulnerable. Medicaid does not provide coverage to undocumented immigrants, though the data sharing agreement claims to exclude citizenship data. Kaiser Family Foundation reports: “Undocumented immigrants are not eligible for Medicaid or other federally-funded coverage, but payments for emergency services may be made to hospitals on behalf of individuals who are otherwise eligible for Medicaid but for their immigration status.” We understand their concerns and are advocating for needed protections to ensure enrollee data security. Many immigrant families have been reducing their interactions with the healthcare system as a result of current ICE activities. Disabled individuals from all communities deserve to feel safe accessing the care they need.
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