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.
Myth: Self-Direction is Only for Younger Individuals with Disabilities
Self-direction serves individuals of all ages and across various abilities and conditions. According to the latest available data from AARP, 56% of adults who require long-term services and supports (LTSS) are over 65 years old, whereas 44% are between the ages of 18 and 64, and the ratio is similar for those who self-direct. While self-direction is greatly beneficial to individuals with disabilities or patients who have chronic illnesses, it is not limited to those populations. Self-direction enables a wide array of eligible individuals to decide how, when, and from whom their care will be delivered. In addition to children with developmental or intellectual disabilities, self-direction is also an option for individuals with physical disabilities, mental health conditions, elder care, care for veterans, and individuals with traumatic brain injuries.
Myth: Self-Direction is Overwhelming for Participants
The beauty of self-directed care is that it equips individuals with a level of independence and choice that restrictive, long-term institutional care alternatives can’t provide, while also providing guidance in every aspect of their care journey. Dedicated case managers and financial management services (FMS) providers work closely with participants to direct their care and to liaise between the individual and the program. The resources available to participants ensure that they are never left to go it alone.
To illustrate what this looks like in practice, consider the two models by which participants can choose to self-direct their care. The first, and most popular, is the Fiscal/Employer Agent model, where participants are considered the employer of record. The participant sets the parameters of their care and then selects the caregiver they trust. Then, the participant works with an FMS provider to ensure all taxes, workers’ compensation policies, and Medicaid-required reporting are properly filed, and correct payments are made or distributed.
The second model is the Agency with Choice or Co-Employment model. With this model, a Home Health, Personal Care, or other agency is the employer of record. The agency provides a care worker for the participant, who can set the schedule and outline the duties needed. The agency is responsible for paying federal, state, and local taxes and insurance. Regardless of which model participants choose, they will be supported every step of the way to ensure their care journey is as seamless and simple as possible.
Empowering Vulnerable Populations
Self-direction is a growing alternative to traditionally delivered home health agency-provided care, empowering participants with decision-making authority and direct responsibility to manage and direct their care, in their own homes, with the assistance of a system of support. The impact of self-direction extends beyond the individual level, as it helps to create cost savings for the healthcare industry, alleviates the shortage of caregivers, and improves the quality of life and health outcomes for our most vulnerable patient populations. Together, we can work to ensure that more Americans learn about self-direction and take more control over their own care.
About Vince Coppola
Vince Coppola, Chief Executive Officer (CEO) for PPL, has 25 years of healthcare experience, including previous leadership roles at Blue Cross California, United Health Care, Magellan, Cigna and healthcare technology organizations. He is focused on advancing consumer direction programs by enabling more cost-effective care to those in need.
