Can Self-Directed Care Be a Successful Path to Recovery?

Self-direction, a therapeutic recovery program in which participants can use a small portion of their health care funds for other goals, can help people with serious mental illness (SMI) find and maintain jobs and housing. This finding, published in the July issue of Psychiatric Services, offers some of the first evidence that this strategy can pay dividends in an SMI population.

The concept of self-direction dates to the 1990s after Medicaid expanded the scope of services it would cover beyond basic medical care. Many states began offering “cash and counseling” programs in which people with long-term needs would work with their caregivers or other coaches to budget some of their Medicaid money around a personal set of goals. These goals typically encompass employment (using the money to buy a car to get to work), housing (buying furniture so guests can come over), and personal health (such as dental care) as part of a person’s recovery mission.

The amount of money provided can vary from program to program, but it is modest, maybe a couple of hundred dollars a month or so. The belief is having some financial control, no matter how modest, can help the patients achieve their independence.

“For those of us interested in recovery models and person-oriented care, these programs offer a creative approach to helping patients,” said Bevin Croft, Ph.D., a research associate at the Human Services Research Institute in Cambridge, Massachusetts, and lead author on this study. “They put choice back into the hands of the people who use the services.”

The cash and counseling programs were initially developed for older disabled adults or young adults with developmental disabilities such as autism. In 2002, Florida began implementing a self-directed program for patients recovering from schizophrenia or other serious mental illness in the northeastern part of the state. A second program in Florida (in the southwestern region) and pilot programs in a handful of other states have slowly sprung up since then; the most recent analysis conducted in 2013 suggested about 700 patients with SMI were participating in self-directed care.

Croft and colleagues collected administrative data on 271 participants in the two Florida self-directed care programs that spanned a period of roughly four years. They compared the housing and employment trajectories of these people with 1,099 matched Florida residents with a diagnosed SMI who were not enrolled in self-directed care.

They found that over time, the participants in the self-directed care programs had greater improvements in employment status (as measured by the number of paid working days in the past month) and housing independence (time spent away from assisted living, a group home, supported housing, living with family as a dependent, an inpatient hospital, or being homeless).

As noted in the article, the improvements were modest; the data suggested that 18 people would need to be enrolled in self-directed care to ensure one person achieved an increase in paid working days; 16 people would need to be enrolled to ensure one person would transition to independent living. “But, were these results modest because self-directed care only offers modest benefits, or because our data were limited?” Croft asked.

As Croft explained, self-directed care programs try to be personalized, but at the administrative level, states have different rules regarding how much money is allocated and how it can be spent. Even the two Florida self-directed care programs, as an example, operate slightly differently. As such it can be difficult to get data from multiple programs that is truly comparable.

“Given the limitations, the take away message is that these results are promising enough to consider these programs viable,” she said.

Croft told Psychiatric News that this recent paper represents just one part of a large project that is assessing the outcomes of participation in six states currently using self-directed programs for behavioral health (Florida, Michigan, New York, Pennsylvania, Texas, and Utah).

Once information for all the programs is available, it may help identify what works best in terms of implementing these programs, such as how to set a realistic budget or recruit participants.

Jennifer Spaulding-Givens, Ph.D., M.S.W., an associate professor at the University of North Florida in Jacksonville and former operations director for the northeast Florida Self-Directed Care program, hopes this new data will encourage more states to give mental health self-direction a try. Several factors, including limited financial resources and difficulty integrating self-direction into established managed care bureaucracies have restricted the expansion of these programs, she noted. Having more published evidence that these programs work might convince agencies to explore new funding and contracting strategies.

“To be frank, though, I’m skeptical that self-direction or other client-centered, recovery-oriented services will be widely available until a major paradigm shift occurs,” said Spaulding-Givens, who was not involved in the current study.

“In my mind, the greatest barrier is the prevailing paradigm among bureaucrats and mental health providers that individuals diagnosed with a mental illness are believed to lack insight and the ability to manage their affairs,” she continued.

This study was funded by the Robert Wood Johnson Foundation, with additional support from the National Institute on Alcohol Abuse and Alcoholism. ■