Why self-direction is gaining ground among people with disabilities and aging in place

More people who live with disabilities or age in place are turning to self-direction for the long-term services and supports (LTSS) they need. With self-direction, the person who needs care is in charge of who provides it, when and where. They may also control how to spend a budget authorized by their state Medicaid program, using approved dollars not only to pay people who support them but to access goods and services identified as appropriate for making day-to-day life manageable.

According to AARP, "More than 1.5 million people self-directed the LTSS they receive, including veterans and Medicaid participants, in 2022 and 2023." The number has grown 18% since 2019, and there is good reason for the uptick. Self-direction gives people autonomy in how they live their lives. It helps people avoid institutional care and remain in familiar home and community settings while receiving the support they need to thrive.

"With self-direction, people who need services are heard. It's about their goals and expectations, and the focus is on that person's strengths," says Pearl Barnett, COO of GT Independence, a financial management services company that helps people manage the payroll and paperwork associated with self-directed programs. "Every person should feel they are involved in their life decisions, such as who they let into their home and who provides intimate personal care, like bathing and dressing."

Expansion of federal waiver programs and state plan services has increased access to self-directed services. As the uptake grows, more evidence is coming to light about the many ways self-direction is improving lives.

Empowering individuals to make choices

People who self-direct can tailor their support and services to their needs. They are involved in planning, starting with who to hire, including family or friends who may already be sacrificing time and financial security to provide unpaid care. They can also weigh in on which tools and equipment to purchase to assist them in everyday activities.

Self-direction empowers individuals by giving them control over their care and promotes independence. As one participant diagnosed with severe autism relays, traditional care options "became a one-size-fits-all deal, and that wasn't good enough. [Self-direction] allows me to choose my path in life."

Studies suggest that self-direction contributes to enhanced quality of life, as self-direction participants report higher levels of satisfaction with services and fewer unmet needs. Overall, their health outcomes are as good or better than those who receive traditional care, and some studies have shown that their families experience less stress and improved dynamics. As one daughter supporting her aging mother says, "It's helped me to be able to go ride my bike…or take an overnight. I hadn't been anywhere for two years until we got self-direction."

Because the person getting self-directed support knows their needs best, they have flexibility to make adjustments as needs and circumstances change, as long as they remain within their program's guidelines and budget parameters. As cost controls are in place, self-direction programs are generally able to support people at a lower cost than traditional care facilities, while providing more personalized care.

Finding a self-direction program

For individuals and families seeking greater control over long-term care support, a self-direction program may be the answer. Unfortunately, such programs often have limited availability. "Self-direction is life changing, and we're advocating for it to be an option everywhere for everyone," says Barnett. "Check with your state's department that serves older adults and people living with disabilities to see if it's available or get in touch with GT Independence to be pointed to area resources."

More information about self-direction can be found at Medicaid.gov and gtindependence.com.