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When a person chooses to self-direct their Medicaid services they make decisions about and manage their own home and community-based services (HCBS) and supports. Self-direction is different from traditional models of service delivery where an agency manages and delivers services for a participant. In the self-direction model, participants have increased flexibility to choose supports that fit their needs to help them lead the lives they want to lead. People who self-direct generally have more control over their daily lives.
The movement toward self-direction began after World War II when the Federal government began a program that gave cash benefits to veterans with disabilities sustained in the war. The Independent Living Movement, started by Ed Roberts in the 1960’s, continued the push towards self-directed supports to allow individuals with disabilities to live the lives they want in the community. In 1998, the Robert Wood Johnson Foundation joined forces with The US Department of Health and Human Services to launch the Cash and Counseling Demonstration program. The Cash and Counseling model led to the establishment of self-directed Medicaid service options as they exist today.
The degree to which individuals with disabilities direct their care varies fro m state to state. In some states, participants who self-direct can recruit, hire and train their own staff and determine how the Medicaid funds in their personal budget are spent. In other states self-direction is more limited.
At the height of the COVID-19 pandemic, the Centers for Medicare and Medicaid Services encouraged states to expand access to self-direction and the number of participants opting to self-direct skyrocketed. A recent report from the National Core Indicators (NCI) says that 46 states and the District of Columbia now offer a Medicaid self-direction option. NCI partners with state human services systems to measure and track their performance, primarily by hearing directly from people who use services.
An NCI study from 2019 showed numerous positive outcomes for people who self-direct their Medicaid services. People who self-direct their care experience increased satisfaction with their paid and family caregivers, higher life satisfaction and a reduction in hospitalizations and emergency department usage. Individuals who self-direct their care are also more involved in community activities and have more consistent services than people not self-directing their services. Interestingly, self-direction has benefits even to people who choose not to self-direct their services. Participants who opted to stay in traditional service models reported increased self-determination simply by knowing they have the option to self-direct their services.
Additionally, 81% of self-directing participants reported receiving adequate information about the relationship between their budget and their services, and 74% percent said the information was easy to understand. However, only 39% of users responded that they could make decisions about or had input in terms of how the budget for their services was used. The idea of being able to make financial decisions is what advocates mean when they argue for increased budget authority. Budget authority is a privilege that many people with disabilities do not have.
“If we (people with disabilities) could control our own budget, we could be a lot more innovative,” said Julie Reiskin, co-executive director of the Colorado Cross-Disability Coalition. Federal guidance on self-direction prioritizes person-centered planning, individual budgeting and support related to self-direction, but Reiskin says budget authority should be made more explicit and consumers should have more discretion over the funds.
Reiskin uses transportation as an example of how self-direction and budget authority can improve services. She explains that self-direction can be facilitated by integrating the use of rideshare and shopping apps into service delivery. She says these kinds of apps might not be the best option for everyone, but making them available to users who want them could take stress off the entire care-delivery system.
“If you have someone who needs help grocery shopping, but a lot of the support they need involves getting there and back, we could pay for someone for ten minutes to come to their home and help do Instacart. But instead, we’re going to pay for someone to help the person with a disability physically go shopping. How does that make sense?” says Reiskin.
Self-direction is also about interdependence, says Reiskin, who is a member of the advisory council for the Center for Rehabilitation Outcomes Research projects related to HCBS. Just because a person opts to self-direct their care that doesn’t take away their right to depend on others the same way a person without disabilities would. “We tend to look at problems as a binary, not a continuum. I think it needs to be looked at as a continuum,” Reiskin said.
Different users might need help with different skill sets, says Reiskin. “All of us get support with decision making at different levels.” Where one person might need budgeting support, another might need help hiring caregivers. "We shouldn’t assume someone is a failure if they can’t make every single decision about every single thing in their life,” she explains.
Joe Caldwell, senior scientist at the Heller School for Social Policy and Management at Brandeis University, called self-direction “the most evidence-based way of delivering care in Medicaid.” According to a paper published in The Journal of Disability Policy Studies that cites his research, participants with disabilities reported more satisfaction and feelings of safety when family members provided care in familiar environments under self-direction.
Benefits of self-directed care have a positive impact on the whole family, explains Caldwell. These benefits include fewer service gaps, increased trust and more social connection for the participant. Caldwell notes that a barrier to participating in self-direction is that it often requires the involvement of a strong network of family and friends. “A lot is involved in making self-direction happen,” Caldwell said.
Another barrier to self-direction is the lack of education for people with disabilities about their service and support choices, including the option to self-direct. “The root of many people’s fears when moving to self-direction from more traditional service models is a scarcity mindset when it comes to resources, which is common among people with disabilities,” says Reiskin. “Service providers are sometimes afraid of increased workloads, while consumers with whom she speaks are often risk-averse.”
In looking ahead and focusing on solutions, flexibility and the input of users are key, both Caldwell and Reiskin said. Much is unknown about the future of self-direction, but research shows that “more flexibility is better,” Caldwell said. Given the positive outcomes that do exist, more data is needed to better understand overall impact of self-direction and how it can be improved.