Peers prove that recovery is possible, every day

In the addiction world, being in recovery means being substance-free. But it also means having “a better quality of life,” and that is the underlying theme of all recovery, including recovery from mental illness, says Laurence Miller, M.D., medical director for the division of behavioral health services in the Arkansas Department of Human Services, and professor of psychiatry at the University of Arkansas for Medical Sciences.

The concept of peers – people who have the same condition as the people they are helping – originated in the addiction field, because the notion of recovery started there, says Miller, who is a spokesman for the American Psychiatric Association. “When I was in training, there was no such thing as recovery,” he says. “We talked about stabilizing patients so they could leave the hospital and not come to the clinic so much, but that was it.”

What recovery really means is “having a life like everyone else,” says Miller. “With newer medications, there is the opportunity to have a full life, not just stability,” he says. “People can have jobs, go to school, have relationships.”

Health care reform

And it is this full life – wellness – that is the reason why peers are an essential part of health care reform. The Affordable Care Act emphasizes wellness promotion and prevention and, for the mental health field, that means diversion away from emergency rooms and hospitals, says Harvey Rosenthal, executive director of the New York Association of Psychiatric Rehabilitation Services (NYAPRS). This gives peer services the opportunity to develop sophisticated models around wellness coaching, crisis respite, warm-line services, peer bridging, and peer-recovery centers, he says.

State Medicaid agencies and private managed-care organizations are encouraging and expanding the use of peer services, says Rosenthal. About 17 years ago NYAPRS developed a “peer bridger” model, in which peers are trained to provide support to people who have had long stays or frequent admissions to state hospitals. The model aims at helping these people make a smooth and lasting transition to the community. “We help them get out of the hospital and stay out of the hospital,” says Rosenthal, who was hospitalized in 1969, and ended up working in a state hospital and then in a clubhouse program before joining NYAPRS.

Credibility of peers

Some people think that even psychiatrists should have experience with mental illness in order to be better clinicians, says Miller. “I have heard the argument that ‘If you don’t have schizophrenia, you can’t treat me.’ I don’t buy it. If we’re going to think of these illnesses as real and biologically based, we have to embrace the concept that it doesn’t take one to treat one.”

But Miller does think someone who is trained and has been through the experience of mental illness has tremendous power to help professionals. “One of the things peers can do is give hope,” he says. “Professionals talk to patients and treat patients, but when you have someone who has been through it, walked the walk and talked the talk, that gives hope to people that they can do the same thing.”

Having a mental illness “isn’t necessary for recovery support, but it gives you more credibility,” says Deborah Fickling, a behavioral health ombudsman and peer advocate working in New Mexico. Peers are a part of the movement to counteract the traditional paternalism of psychiatry, in which patients are told “’You’ll do whatever I say because I’m the doctor and you’re the patient,’” she says.  

‘Living examples of recovery’

Peers offer a unique contribution to recovery that is unavailable without them, says Rosenthal. “They act as living examples of recovery,” he said, giving hope to people who for years were told they couldn’t do it.” Peers also provide a personal relationship – a connection to a real person – who can give them a sense of independence in a health care system that often encourages dependency. “This is an honest and reciprocal relationship,” says Rosenthal.

And the hope isn’t only regarding clinical realities of mental illness. Peers help consumers understand that they too can deal with just plain reality, which can be difficult even for people without disabilities. For example, Fickling helps people navigate the complicated Medicaid system.“I share with people who are looking for help themselves that I’ve been there,” she says.

Agencies that hire peer specialists can get reimbursed by Medicaid for comprehensive community support services that are clearly not clinical, says Fickling. These services can be as simple as learning how to take a bus or how to open a bank account, she said. When the person with the mental illness is a child, there are also family support specialists who can help parents navigate the system.

Peers don’t have to be matched by diagnosis, says Sue Bergeson, Vice President for Consumer Affairs at OptumHealth Behavioral Solutions, which contracts with peer organizations to provide services to members. “What you really want from a peer is someone who understands what it’s like to live with a mental health condition, period,” she says. “I have these symptoms, I have to take my meds. It’s not about unique patterns of symptoms. Even if two people have bipolar disorder they’ll experience it differently.”

A peer should be culturally matched to the consumer, however. For example, an older consumer should have an older peer. “A culturally appropriate peer is more important than the diagnosis,” says Bergeson.

“Empowerment” and “support” are the two things peer specialists are best at doing, says Bergeson. “Their job is a special skill set – not the same as a doctor’s.” Peer specialists also help patients identify their recovery goals, says Bergeson. For example, if someone wants to work with animals as a career, the peer specialist might help them arrange to volunteer at the local animal shelter to see how they like it.

Peer specialists at OptumHealth must be in recovery for at least a year, says Bergeson, who views recovery “as a process, not an end state. OptumHealth can measure success by a reduction in hospital days, but the main point is to ‘move people to wellness.’”

Medication

Asked about the anti-medication movement among some peer organizations, Fickling says, “They’re entitled to their beliefs.” However, she adds that peers must always be open to the full range of information and treatment that an individual might require. “Just because you don’t believe in medication doesn’t mean that should be the choice of the person you’re supporting.”

“To me, an illness is a medical thing,” says Fickling. “I’ve been taking medication for depression for 20 years, but I realize a lot of the work I need to do to have a full and active life is to understand what brought me to having to take medication.”

There are some people who don’t need medication, says Miller, but there are others who do need it to maintain their recovery. “We need to respect all of these people.”

Mainstream peer organizations want to work with professionals, says Miller. He recalled being at a meeting a few years ago at which an advocate said peers could do everything professionals could do. “Would you want a peer treating diabetes?” he asked rhetorically. “Mental illness is an illness, it’s an illness of the brain,” he said. “I don’t think it’s wise to advocate that people don’t need any kind of professional help.”

And OptumHealth’s Bergeson said peers should not be involved in making medication recommendations, said Bergeson. “That is not their job,” she said. “I am also trained as a peer specialist, and we are trained that that is not our job.” If a member wants to reduce their medications, the peer’s job is to “communicate with the member to talk to their doctor about this,” she said.

Rosenthal, who thinks too many people are overmedicated, says that peers simply are not clinical or medical. “We’re not a medical-model program, we don’t want clinical responsibility,” he says. The peer can provide appropriate information, and can support informed consent.

“Back in the 1970s and 1980s people were told they needed to be on medication, and lots of it, for the bulk of their lives, and sometimes they were exposed to rehabilitation and peer support,” he says. “Now we’re coming into a phase where the opposite is true, where people routinely get peer support and rehabilitation, and only get medication if it is needed.” Medication is starting to take “its rightful place as one tool in the tool chest.”

More than the diagnosis

And Fickling believes while it’s important for people to realize that they have an illness, they are more than that illness. “The peer can help someone figure out on their own who they really are,” she says. “Instead of having people say ‘You’re bipolar’ or ‘You’re schizophrenic,’ the peer can help someone feel comfortable and say, ‘I’m a person, not my diagnosis.’” The point, says Fickling, is to “move forward in your life.”

Some peer operated programs offer a range of services – housing, employment, advocacy, and training, says Jody Silver, Director of the Office of Consumer Affairs, Mental Hygiene Division of the New York City Department of Health and Mental Hygiene. The invaluable experience peers have to offer is a combination of their lived experience and lessons learned from navigating the mental health system, says Silver.

“There’s a certain kind of connection and trust” in working with a peer, says Silver. “An individual knows that they’re not being judged, that this person has gone through it.”

Conflicts and training

Sometimes there are conflicts, such as when the professional staff doesn’t validate what the peer says, says Miller. It’s also important to pay attention to the welfare of the peers. “Some triggers can get reawakened with this,” he says.

Some peer specialists “go too far – they say they have ‘clients,’” says Fickling. “It’s hard to figure out whether they are capable of setting boundaries.”

So for protection of the peer coach and the person being helped, peer training is essential. “We have to talk about boundaries and ethics,” says Miller. “When we develop an aftercare plan with a patient, we think of who in the village is going to work with this patient and help them maintain their recovery.” This person could be their teacher, trainer, hairdresser, anyone who is part of the patient’s world, says Miller. “Recovery includes peers and expands aftercare beyond just the professional team,” he says.

Reinvesting savings

Using peers to reduce hospitalizations achieves an Olmstead agenda, but is unrelated to Olmstead, said Rosenthal, referring to the U.S. Supreme Court decision that required deinstitutionalization. New York had agreed to close five state hospitals and advocates worked to reinvest those savings into community supports. “Previously people had been told to expect hospitalizations,” says Rosenthal. “The recovery movement rejects that and we know that people, with appropriate supports, can stay out of the hospitals.”

Private payers as well as state payers are interested in using peers to reduce hospitalizations, which are costly as well as traumatic. Both NYAPRS programs are affiliated with OptumHealth Behavioral Solutions. The Peer Bridger program has a 77-percent success rate – those patients do not go back to state hospitals. The other, peer wellness coaching, is a precursor to a health home, and utilizes peers to work with nurses and case managers to support people getting in to a more self-directed program of care, says Rosenthal.

Generally, peers are matched with individuals who have had two or more hospitalizations in one year, says OptumHealth’s Bergeson. “The member seems very stuck at that point, so we’re offering some enhanced services to help them move forward,” she said. Out of every million covered lives, only 100 or 150 would have two hospitalizations a year, she said.

While all of this excitement about peers is going on, it’s important to remember one big challenge: funding. Some peer-operated organizations have limited capacity to access non-government resources, says Silver of New York City. Although most peer run organizations are primarily government funded, “it’s important that they seek other funding streams such as foundations and individual donors.”

Alison Knopf is a freelance writer.