NYAPRS Note: WNYC continues to profile mental health system changes in NYC, and today focuses on the Parachute respite center in NYC, run in collaboration between DOHMH and community rehab providers including long-time NYAPRS supporter Community Access. The shift of crisis respite into mainstream recognition of community alternatives signals a potentially dramatic change in the way the healthcare system and non-involved community members view mental health crisis and stigmatization.
Respite From the Storm
WNYC; Cindy Rodriguez, 2/5/2015
Not far from Union Square, around the corner from fancy brownstones and tree-lined streets, sits a four-story red brick apartment building. It’s un-remarkable on the outside, but on the inside, it has become a refuge for adults in the throes of a mental health crisis.
Those who stay here are called guests, not patients. And the homey décor is more bed-and-breakfast than medical clinic. A cozy living room on the second floor is painted a soothing shade of yellow. There’s a leather couch and a guitar in the corner. Seven people can stay here at a time.
Respite Centers have their roots in the reform the movement of the 1970’s and 80’s. Now, decades later, they are being embraced by government bureaucrats trying to cut costs and advocates seeking new alternatives to restrictive hospitals that, they say, takeaway personal freedom and breed dependency.
They are purposely non-clinical and run mostly by peer counselors — people with histories of mental illness themselves.
“I am a person who, when someone is in crisis, is able to talk to them and understand what they are going through a little bit more than someone who doesn’t have a life experience,” explained David, one of several such counselors working an afternoon shift. “I am able to hopefully make a connection with people so they don’t feel all alone.”
The 35-year-old said he struggles with anxiety and depression and was once hospitalized for several weeks. He asked only to be identified by his first name.
Inside a sunny bedroom facing the street, Jerry, 62, said a severe bout of depression brought him to the center. He lives in Brooklyn, and he too did not want to give his last name.
He said having a connection with others who have experienced mental illness is crucial to his success in the program.
“Everybody here is going through something quite similar, so you can talk to people and be understood,” he said.
“In the past there was no place to go except the psych ward,” Jerry said. “I didn’t get to the point where I was suicidal this time, and this is just an oasis. This is a wonderful thing.”
The city’s health department is hoping more people like Jerry will take advantage of respite centers and avoid costly hospital emergency rooms. Officials say typically, there are 100,000 psychiatric emergency room visits per year.
According to the state Office of Mental Health, historically about 30 percent of all mental health spending, or 2 billion dollars a year, goes to emergency-room care and inpatient beds. That’s for less than 10 percent of the patients, according to advocates.
That wasn’t the plan decades ago, when care was supposed to shift to community based programs that were cheaper and more effective. Respite centers are part of a new shift in that direction. There are only four right now, one in each borough except Staten Island. But they’re expected to expand into a mainstream Medicaid program, available to more than 140,000 people, starting in July. It is a complicated process though that could be delayed, causing problems for the programs because their original federal grant is about to run out.
While the centers are, without a doubt, cheaper to run than hospitals, advocates for the mentally ill believe they are also healthier alternatives that allow a person to see their mental illness through a new lens. Lauren D’Isselt, director of the Manhattan center, said that’s why staff avoid using medical terminology or focusing on a guest’s specific diagnosis.
“Sometimes when people are walking around with a diagnosis or labeled schizophrenic or whatever, it might be they stop being seen as a person, an individual with a story,” she explained. “Not only are they seen in a limited way, but they kind of follow then a very limited path. So here we try to give people the opportunity to make their own frame for themselves.”
D’Isselt is a psychologist and one of only two clinicians at the respite.
39 year-old Sincere – not his real name — was in desperate need of resetting an old pattern of anger and aggression that landed him in a hospital emergency room several times a week. He came to the respite to try and change that. The source of his anger is complicated.
“I created in my mind where I have a family with probably four wives and eleven children,” he began to explain. “I can’t go a day without thinking about them. They’ve been my friends, my family, my love.”
The problem is that his dead brother, who he often fought with as a child, has been abusing his imaginary wife and kids.
“His spirit is jealous that I’m dreaming instead of having it in reality,” he said. “But my thing is…reality doesn’t want me. They don’t accept me. So I fantasize because it’s the only thing I know to have love.”
The details of Sincere’s real family are incomplete. He says he grew up with a single mother in public housing in Bedford-Stuyvesant and was diagnosed as mentally ill around the age of eight. He is still in touch with a sister. As a child, he was in and out of hospitals. As an adult, he spent years living on the streets, was arrested for armed robbery and did time in prison.
His medical diagnosis is paranoid schizophrenia and manic depression. He is adamant that he understands his fantasies are not real – he calls what he has an overactive imagination. But there is no denying his despair.
“There’s times in my life where I really wish I wasn’t here. I hate to say it but I really wish God didn’t make me,” he said. “I’m struggling to force myself to stay here and live this life out.”
Sincere, like the rest of the guests, had two weeks to stabilize before he would have to return to his regular life. During the stay, it’s up to him to follow his prescribed medication routine. He can also check himself out at any time, and come and go as he pleases.
David, the peer counselor, said the personal freedom is one of the many things that make this place better than a hospital.
“In the hospital, a lot of people — like myself towards the end — were saying everything the doctors wanted me to say so that I could leave,” he said. “Here people can come and go as they please and they can discharge themselves anytime they want, so it’s a more honest exchange.”
By the end of his two weeks, Sincere was sounding like a new person. He became friends with his roommate Kane. He called the two of them inseparable and said they had connected over music and their mental illnesses. There had been no outbursts or violent episodes.
“I’m more at peace than anything right now,” he said.
He went home the following day to his apartment in Hell’s Kitchen. He lives in supportive housing for the mentally ill and has a curfew. Less than a month later, the anger and aggression had reappeared. He had punched a hole in the wall of his apartment and was worried he would get kicked out.
“I can’t go to the backyard at night when I’m really stressed out,” he said. “I can’t even take a walk when I’m angry. I’m just cooped up in the house and I’m gonna explode.”
D’Isselt came by to check on him and brought Kane, his roommate from the respite. The two men hugged and slapped each other on the back. “How you doing man?” Kane asked. “Better now that you’re here,” Sincere replied. He asked for Kane’s phone number. Kane, who struggles with depression, promised he would keep in better touch going forward, and explained that he hadn’t called earlier because he had been going through some troubles himself.
“I didn’t want to give you any bad stories,” he said.
After leaving the respite, Kane had become homeless. He said a friend in the Bronx was supposed to give him a place to stay, but it didn’t work out. So he had spent the last few nights sleeping on the street near the respite, in a spot where he used to write songs.
“I brought a lot of the positive attitude that I had at the respite center along with me on this journey,” he said with a laugh.
Sincere was struggling to stay positive. D’Isselt reminded him of the calmer person he was at the respite.
“We’ve never seen the side of you that you describe – yourself being a really angry person and raging,” she said. Sincere told her it was because he had someone to talk to at the respite. Now, he was feeling ignored.
On a noisy corner on Tenth Avenue, the three talked a while longer. Sincere and Kane shared a cigarette and a hug, and then they were off again to cope with life on the outside.
http://www.wnyc.org/story/respite-storm/