If you or a family member needs help with daily tasks like bathing, dressing, or managing medications at home, you may be counting on Medicaid to help cover those services. But a growing body of data shows that hundreds of thousands of Americans are sitting on waiting lists for Medicaid home and community-based services (HCBS), sometimes for years. For people enrolled in ACA marketplace plans, understanding how this issue affects you, and what your options are, matters more than ever.
What Are Medicaid Home and Community-Based Services?
Medicaid HCBS programs help people with disabilities, older adults, and others who need long-term support live in their homes or communities rather than in nursing facilities. These services can include personal care aides, adult day programs, respite care for family caregivers, and other supports that make independent living possible.
States run these programs through Medicaid waivers, and each state sets its own rules about who qualifies and how many people can be served at one time. Because funding is limited, many states have capped enrollment, which is why waiting lists exist in the first place.
Why Waiting Lists Are Longer and More Complicated Than They Look
Recent data tracking waiting lists from 2016 to 2026 shows that the number of people waiting for HCBS has grown significantly over the past decade. However, the actual picture of unmet need is likely even larger than these numbers suggest, for a few important reasons:
- Not all states report waiting lists the same way. Some states track everyone who applies, while others only count people who have been formally approved and are actively waiting for a slot to open.
- Some people never apply. Many individuals who need services do not apply because they have heard the wait is too long, do not know the program exists, or have given up after previous rejections.
- Waiting list length does not equal waiting time. A shorter list in one state might actually mean a longer wait than a longer list in another state, depending on how quickly spots open up.
In short, the waiting list numbers are useful as a general signal, but they undercount the real number of people who need care and cannot access it through Medicaid today.
How This Affects ACA Marketplace Enrollees
If you are currently enrolled in an ACA marketplace plan and you or a family member needs long-term home care, here is the reality: most marketplace health plans do not cover ongoing personal care or home health aide services beyond short-term skilled nursing visits after a hospitalization. Long-term home care is generally not an essential health benefit under the ACA.
This means many marketplace enrollees fall into a difficult gap:
- Their income may be too high to qualify for Medicaid, or they may not meet their state's disability criteria.
- Their marketplace plan does not cover the long-term home care they need.
- Private long-term care insurance is expensive and harder to obtain if a health condition already exists.
For people who do qualify for Medicaid, getting onto an HCBS waiting list as soon as possible is critical, because the wait can stretch from months to several years depending on the state.
Practical Takeaway
If you think you or a loved one may need Medicaid home care services in the future, do not wait until a crisis hits to explore eligibility. Contact your state Medicaid office or a local aging and disability resource center (ADRC) to ask about HCBS waiver programs and waiting list enrollment. Even if you currently have a marketplace plan, getting your name on a waiting list early can make a significant difference in how quickly you access care when you need it most.