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From Patient to Advocate

From Patient to AdvocateTufts graduate Jonathan Delman has gone from battling his own mental illness to becoming an advocate for mentally ill patients across Massachusetts.

Medford/Somerville, Mass. [12.11.08] Jonathan Delman (A'81) battled mental illness from an early age. It wasn't until the late 1990s, however, that the Tufts graduate began fighting a different battle as leader of a Massachusetts-based consumer-run program advocating for the rights of mentally ill patients across the state.

Delman is the founder and executive director of Consumer Quality Initiatives (CQI), a Boston-based agency staffed primarily by people with mental illness. Started in 1999, the agency works to evaluate the performance of the state's public mental health services by going right to the source-the patients themselves.

"The current movement nationally is to create opportunities for people with disabilities to have more control over their lives," Delman says. "It is important to have consumer-run programs, because it not only provides people with job opportunities, but also to demonstrate to consumers that recovery is possible."

Thanks to his dedication to the agency, Delman received a $125,000 leadership prize from the Robert Wood Johnson Foundation, one of the nation's most prestigious awards for community health work. The focus of the award is to honor people who "conquer huge obstacles and take commanding action in local communities" relating to issues of healthcare.

For Delman, his obstacle was himself.

Delman's earliest memories of battling mental illness go back to his teenage years.

"When I was a teenager I started to be really down on myself, to the extent that I felt there was some electric field keeping people away from me," he recalls.

Isolated, yet functioning, Delman says he made it successfully through his grade school years, rejecting parental advice to be in therapy, which he saw as an indication of "weakness".

"My father would take me out of school and put me in the car, he would start driving and I would open the door and jump out," Delman says. "My pride was hurt. I had too much pride. I still have it, but I am now much better at managing it."

Despite continued bouts of severe depression and suicidal thoughts, Delman made it through Tufts, graduating summa cum laude with a bachelor's in economics, then moved on to receive a law degree from the University of Pennsylvania.

After gaining a master's degree in public health from Boston University, Delman says he hit his turning point, landing himself in and out of McLean Hospital, a psychiatric care facility in Belmont, Mass.While much of the medical care was helpful, he also learned first-hand about the shortcomings of the psychiatric healthcare industry.

"You end up in a mental hospital feeling depressed and you think people are going to be nice to you, but that is not what consistently happens in many of these places," Delman says. "The hospitals may be doing the best they can, but there are line staff who talk to patients in a demeaning way, if they talk to them at all. Many patients are then cautious of whom they talk to and what they say, as many common communications styles can be seen as pathology."

After leaving the hospital, determined to overcome the stigma he felt as someone who was mentally ill, Delman began volunteering for an organization called M-POWER, or Massachusetts People/Patients Organized for Wellness Empowerment and Rights. It was there where he got his first taste of consumer-run programs. Using his law background, Delman started the Consumer Legal Education Network, providing workshops for people with mental illness to educate them about their employment and housing rights.

Noticing how consumer-run programs empowered mental health patients, Delman and M-Power members began negotiation with the Massachusetts Department of Mental Health and Medicaid to gain funding for more consumer-run programs, and CQI was born.

Throughout its existence, CQI has not only employed a number of mental health patients, but through its questionnaire program, it has given patients a voice, allowing them to evaluate how different hospitals and mental health programs around the state treat their patients, helping to further guarantee they receive the care they want and need.

"The mental health system was created by mental health professionals and psychiatrists, focusing more on stabilization than on reintegration and recovery," says Delman, who is currently pursuing a doctorate from Boston University's School of Public Health. " This has resulted in an inefficient facility-based system, in terms of both financing and structure.This approach has been changing, primarily because of this consumer movement's efforts to promote supported community living, vocational and educational supports, and peer support."

As someone who has suffered from mental illness, Delman's personal experience has helped inform some of CQI's programming. For instance, while he was being treated at McLean, Delman had issues with his anti-depression medication being switched without any consultation, causing him to be ill and lethargic until he finally stepped in and made sure he was receiving what he needed. CQI is currently working on a project that will arm patients with medication information that will help them have more input into how they are treated. A portion of Delman's $125,000 award is slated to fund CQI's Peer Research Academy, which pools together such treatment information from leading online sources.

Looking ahead, Delman also hopes to expand CQI's services on a more national level, collaborating with universities and other research institutions to further the concept of consumer-based research.

Since receiving the award, Delman says he has received a lot of calls from people wanting to learn his story, and so far, he's not tired of telling it.

"It's really great but strange," Delman says of this newfound attention. "I hope to continue to demonstrate that people with mental illness can get better and recover, and that I am on of many out there who are living embodiments of this ideal."

Delman says CQI's work has proved to be "powerful medicine" for mental health patients who are now, for the first time, being asked to share their opinion on their own healthcare treatment. He knows from experience how that could be just the medicine they need.

Profile by Kaitlin Melanson, Web Communications.

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