Debunking the Myths of Self-Directed Care

Self-directed care remains one of the best-kept secrets in long-term care, and though it’s steadily growing, overall enrollment – and awareness – remains relatively low. From 2019 to 2023, the U.S. saw a 23% increase in people self-directing their long-term services and supports (LTSS). Yet, because many eligible individuals remain unaware of self-direction, vulnerable populations, including individuals with intellectual, developmental, and physical disabilities, chronic diseases, and adults over 65, are missing out on the care that best fits their needs. The lack of awareness has led to misperceptions about this model of care and its benefits. As stakeholders continue to advocate for patients to be informed and engaged in their care, combatting the myths around self-direction must be prioritized. 

Myth: Self-Directed Care is a New and Untested Concept

The truth is that self-directed care was first offered by many states in the 1990s when the Robert Wood Johnson Foundation awarded grants to develop “Self-Determination” programs. These successful projects evolved further into Medicaid demonstration programs and in 2005, the Deficit Reduction Act authorized two more avenues for states to offer a self-directed option. In 2010, the Affordable Care Act officially and broadly authorized self-directed services for Medicaid recipients. Today, more than 1.5 million individuals self-direct their care, and with more seniors preferring to age in place and individuals seeking more control and increased trust in their caregivers, the number of participants choosing to self-direct their care is expected to grow.

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