A statewide program that starts treating young people with schizophrenia and related disorders less than two years after symptoms begin is helping participants stay or transition into the workplace and college, data show.
At the Mercy Medical Center site for the project in Garden City, 48 percent of participants held jobs or were in school when they enrolled in the program called OnTrackNY. That proportion jumped to 76 percent six months later, according to the New York State Office of Mental Health, which sponsors the program. There was a similar improvement statewide.
“The idea is if you do something early on in the course of their illness, you can really help them take a different trajectory throughout their lives,” said David Flomenhaft, director of Mercy’s outpatient behavioral health center. “It’s really a key time to intervene to help people have life skills for love, work, play and finding joy in life.”
Mercy became a program site in 2016. OnTrackNY’s 21st and newest location, at South Oaks Hospital, a psychiatric facility in Amityville, launched in December. There previously had been a site in Farmingville. There are 721 participants statewide, 24 at Mercy and seven at South Oaks.
OnTrackNY, which began in 2013, is limited to those ages 16 to 30, which is when most people begin manifesting symptoms of schizophrenia and related psychotic disorders. Common symptoms include delusions, hallucinations and a dysfunctional thought process. Between 1 in 156 and 1 in 400 Americans have schizophrenia, according to the National Institute of Mental Health.
One of the keys to OnTrackNY is the team approach, Flomenhaft said. Participants talk to counselors, psychiatrists and trained “peer specialists,” who share their own experiences with mental illness. An education and employment specialist helps with school or work, and a nurse focuses on physical health and wellness. Team members speak with each other about participants.
Schizophrenia and other psychotic disorders affect each person differently and vary in severity, said Dr. Lisa Dixon, OnTrackNY director and a professor of psychiatry at the New York State Psychiatric Institute in Manhattan. OnTrackNY team members do not know in advance how each participant will respond to treatment and medication, and they don’t make assumptions, she said.
In the past, and to a lesser extent today, “There was a presumption of ongoing continuing impairment that rendered someone unable to function,” Dixon said. “We’re in an era in which that’s shifting. … It’s not appropriate to set someone up to fail. We start with the notion we’re going to try to help that person achieve what is possible. And, truly, truly we don’t know what is possible. People surprise us all the time.”
Shannon Pagdon, 24, wishes there had been a program like OnTrackNY in the small California town where she lived when she began experiencing schizophrenia symptoms at age 17.
“It would have changed everything for me,” said Pagdon, a peer specialist at a Manhattan OnTrackNY site.
Pagdon was despondent after receiving a schizophrenia diagnosis. She assumed she would end up either on the streets or dependent on her parents to care for her.
“I was like, OK, so I’m never going to hold a regular job. I’m never going to date. I’m never going to be able to go to school and complete a degree,” she said.
She now knows that people with schizophrenia have doctoral degrees, work in demanding jobs and enjoy fulfilling lives. Pagdon already has proved her own preconceptions wrong: She has had a boyfriend for three years, earned an associate degree and plans to pursue a bachelor’s degree and then a master’s.
For Jason Paden, 45, of Utica, “The role model, if you want to call it that, for schizophrenia was from the horror movies you watched on TV.”
He has spent most of his adult life unable to work. Meeting other people with psychotic disorders — he has schizoaffective disorder, which includes symptoms common in schizophrenia and bipolar disorder — through a chapter of the National Alliance on Mental Illness and later talking about his illness publicly through a NAMI program helped him to, at age 40, move back into the work world. He now is a motivational speaker.
Paden said he gets “goose bumps just thinking how beneficial” a program like OnTrackNY would have been for him.
“If I had that early intervention, and I had people to talk to about this, who I really felt comfortable with, which it sounds like is what these programs offer … maybe my recovery process, which I tell people took about 15 years, maybe we could have nipped it in the bud and it would have taken two or three years,” he said.
Not everyone with schizophrenia is like Paden and Pagdon. Some with a more severe expression of the disorder may not be capable of work that requires high cognitive abilities, said Cynthia Taylor Scott, the team leader of Mercy’s program and a counselor. For them, a job retrieving shopping carts from a store parking lot may be rewarding.
Schizophrenia can make work and school difficult, Flomenhaft said.
“This illness affects concentration, attention and focus,” he said. “There’s so much inner torment going on that it’s very hard to focus on being in an active learning environment — paying attention during a lecture, taking notes, completing assignments.”
Many people with schizophrenia hear voices. Usually they are self-critical voices “that I’m bad, I’m a loser or I can’t do this,” Flomenhaft said.
Medications and therapy can modulate or eliminate the voices and allow people to “discriminate that, yeah, this is sort of my own worst fears. I’m beating myself up,” he said.
OnTrackNY is receiving slightly more than half of its $8.9 million in funding this fiscal year from the federal government, with the rest from the state, according to the state mental health office. Private insurance and Medicaid also help pay for services. There are similar programs in other states.
OnTrackNY allows participants to help design their treatment. They can meet counselors at a Starbuck’s instead of at OnTrackNY offices, if they feel more comfortable there. They decide whether family members can participate in counseling. They choose whether to take medications, after the benefits and side effects are explained.
People with a say in their treatment are more likely to follow that treatment than those whose mental health professionals will not work with them, said Jennifer Rothman, senior manager of youth and young adult initiatives for NAMI.
“Even for someone who might not have a mental health condition, we all participate more if we feel like we have a say, if we feel like we’re part of the conversation and that our opinions and what we feel is best are considered,” she said.
How to contact
- For more information on OnTrackNY, go to www.ontrackny.org
- To inquire about the Garden City site of OnTrackNY, call 516-705-3400, ext. 3230
- To inquire about the Amityville site, call 631-608-5570