The Long Wait for Care: understanding Medicaid Home Care Waiting Lists
For individuals and families navigating long-term care needs, the promise of Medicaid Home and Community-Based Services (HCBS) waivers can be a lifeline. These waivers offer crucial support, allowing individuals to receive care in their homes and communities rather than being forced into institutional settings. However, accessing these services is often far from straightforward. A notable hurdle is the extensive waiting list many face – a reality impacting tens of thousands across the nation. This article delves into the complexities of Medicaid home care waiting lists, exploring who is waiting, how long they wait, and what options are available while they navigate this challenging system.
The Growing Demand: Who is on the List?
The demand for home and community-based services is steadily increasing, driven by an aging population and a growing preference for aging in place. As of 2025, hundreds of thousands of Americans are on waiting lists or “interest lists” for Medicaid HCBS waivers. But who comprises this waiting population?
The vast majority – 74% – have Intellectual or Developmental Disabilities (I/DD). This highlights a critical need for specialized support for this population. Older adults and individuals with physical disabilities make up a ample portion as well,accounting for nearly 23% of the list. the remaining 4% includes individuals with medically fragile conditions, those dependent on technology, survivors of traumatic brain or spinal cord injuries, people living with mental illness, and individuals with HIV/AIDS.
It’s crucial to note that those on waiting lists aren’t necessarily representative of the broader Medicaid population or even typical home care users. The lists are heavily skewed towards individuals with I/DD.Interestingly, while I/DD constitutes the largest segment of those waiting for services, KFF analysis reveals they represent less than half of those actually served through 1915(c) waivers – the primary funding source for Medicaid home care. This discrepancy underscores the challenges in balancing demand and resource allocation.
[Image of Datawrapper embed: Most People on Medicaid Home Care Waiting Lists or Interest Lists Have Intellectual or Developmental disabilities]
How Long is the wait? A Look at Average Timelines
The wait for services can be agonizingly long.In 2025, individuals on waiting or interest lists accessed services after an average of 32 months (across 41 responding states), a slight improvement from the 40-month average in 2024. However, wait times vary significantly depending on the specific waiver program.
* Individuals with I/DD face an average wait of 37 months.
* Waivers targeting older adults and people with physical disabilities have a shorter average wait of 15 months.
* those needing services for autism experience the longest waits, averaging 63 months.
States that proactively screen for eligibility before adding individuals to the waiting list tend to have shorter wait times (32 months on average) compared to states that do not (49 months). This suggests that efficient eligibility determination can streamline the process and reduce delays.
Living Arrangements & Access to Interim Care
While waiting for waiver services, the majority of individuals remain in the community. Data shows that 96% (154,000) of those whose living arrangements are known live at home, while only 4% (7,000) reside in institutional settings. However, this picture is incomplete, as living arrangements are unknown for over 445,000 people on the lists.
A critical point to understand is that most individuals on these waiting lists are eligible for other forms of home care while they wait.
Bridging the Gap: State Plan Services as a Temporary Solution
Over 5 million people currently utilize home care services through Medicaid. Roughly half of these individuals receive care through the Medicaid state plan, which offers services like:
* Personal Care: assistance with activities of daily living, such as bathing, dressing, and meal readiness.
* Therapies: Physical, occupational, and speech therapy to help individuals regain or maintain independence.
* Assistive Technology: Devices and tools to enhance functionality and quality of life.
Importantly, states generally do not use waiting lists to restrict access to these state plan services. In fact, over 80% of those on home care waiting lists are eligible for personal care or other state plan offerings.
However, state plan services often have limitations. They
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