Delaware County pilot program puts mental health decisions in patients hands

     Recovery coaches Ben Goldstein and LaVonna Reed work with program participant John Hamm. (Erme Maula/Mental Health Association of SE Pennsylvania)

    Recovery coaches Ben Goldstein and LaVonna Reed work with program participant John Hamm. (Erme Maula/Mental Health Association of SE Pennsylvania)

    A consortium of mental health service providers and researchers has organized a novel treatment option for people who get a lot of services through Medicaid. It’s called “self-directed care.”



    “When people first enroll in the program, the first thing we do is come up with a recovery plan based on their hopes and dreams,” said Erme Maula, program manager with Mental Health Association of Southeastern Pennsylvania, one of the groups involved. “Some people had never been asked, so that really was life-changing.”

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    Called the Consumer Recovery Investment Fund/Self-directed Care, the program is administered through Magellan Behavioral Health of Pennsylvania, with input from the Mental Health Association of Southeastern Pennsylvania and Temple University.

    It gives patients the option to redirect that money towards a “freedom fund,” saving for something that improves quality of life. In addition, participants make decisions about care with a certified peer specialist as a recovery coach, which Maula says is unique to this program. This kind of care can reduce costs by giving health care consumers the option to eliminate services that aren’t working, she said.

    What those decisions look like – well, it’s up to the individual.

    For participant John Hamm, that freedom meant looking for a literacy coach. Hamm spent 27 years in a residential home for those with behavioral health problems in Media, Pennsylvania, and even longer going to treatment at least three days a week. But it wasn’t until he started working with the self-directed care pilot program at Magellan that he got help for his dyslexia.

    “All the places I’ve been at, it just made me feel like they just passed me by, just pushed me through — for me to be almost 50-something odd years and read at a third-grade reading level,” said Hamm.

    For Lori Regan, it meant deciding to stop paying a social worker to take her to the grocery store. She decided she could go on her own. She’s taking some of the money she’s saving to be able to visit her family more and rebuild a relationship with her 21-year-old son.

    Not every person in the program took to it like Regan and Hamm.

    “Some people who felt really overwhelmed with an additional service didn’t opt to continue budgeting,” said Maula.

    Analysis of a study from the first two years of the program (2010-2012) showed that health care costs did not go down for most people in the program – on average they went up from $6,800 to $7,500 per year. Participants who had gotten used managing their symptoms tended to opt for more, off-plan services through the program – such as gym memberships – rather than cut back.

    Maula said that information led to tweaks in the program, encouraging people to make a choice between services and aiming at cost neutrality.

    Quality of life, not control

    Irene Hurford, a psychiatrist at the University of Pennsylvania, said self-directed care is part of a trend to focus on recovery, “toward something that’s much more fluid and based on quality of life” not just controlling symptoms.

    “For instance, being able to say I’m on a medicine that puts on weigh for me and I don’t need somebody to come with me to the grocery store. I need to join Weight Watchers,” said Hurford. “That’s an excellent use of self-direction.”

    She said this type of dialogue already exists when psychiatrists get feedback on drug doses or preferences from their patients.

    Pennsylvania and five other states are currently experimenting with Medicaid-eligible self-directed care programs.

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