Some Fear Mutuality is Lost When Incorporated into the Mental Health System
By ANNE DONAHUE
Can peer support offered within the mental health system still allow for the mutuality of relationships that is the core of peer support? Or can it only happen within peer-run agencies?
Is certification for peer support specialists a step forward that will expand access and improve professional acceptance? Or does even being paid for providing peer support destroy the level playing field of a relationship between peers?
As these questions are being raised across the state and the country as peer support becomes more broadly recognized for its benefits, some psychiatric survivors are concerned it is becoming a part of a system that they see as a tool of oppression.
“Peer support is under attack,” and certification “would be a death knell,” David Callahan, a long-time member of Another Way, a peer-run drop-in center in Montpelier, told Counterpoint.
The executive director of Another Way, Elaine Toohey, said she has her reservations about limitations that are placed on peer support workers who are functioning within a system that is “just by its nature, coercive,” but believes that having peer support within the state’s community mental health centers is “absolutely moving in the right direction.”
For Malaika Puffer, who is employed in peer support at the Windham and Windsor Counties agency – Health Care and Rehabilitation Services – agencies like hers have a “genuine buy-in” to the meaning of peer support.
She said that peer support is largely available only to people who are looking outside the system for support, while she and her co-workers are bringing people who are already in the system into contact with those choices when they would not have that access otherwise.
Amy Wales, a Vermont Psychiatric Survivors staff person who is embedded as a peer support staff at Second Spring in Williamstown, said she finds herself “cringing at certain tasks which I am required to perform” for documentation of client activities, and the way it “immediately sets me apart from the person I am working with and changes the dynamic of our relationship.”
Wales thinks certification may become more necessary in the effort to get funding for services but can lead to an “imbalance in the nature of the relationship which runs contrary to the whole philosophy of what it means to be a peer in the first place.”
The START peer support model at the Howard Center in Burlington faces barriers because only Medicaid provides reimbursement, according to staff member Matt Bousquet. It can thus only accept Medicaid or self-pay clients, although it does have a sliding fee scale based on income for those with Medicare, private insurance or no insurance.
Callahan said he sees the money issue as a driving part of the problem regardless of whether peer staff are working for a peer-run or state-funded agency, because a peer relationship “changes once you have a job.”
“A lot of them got bought out by grants,” he said of peer-run organizations. “People came out of the anti-psychiatry movement. They used to want to fight the system.”
A National Debate
Some of the same conflicts were shared in workshops at the national Alternatives conference in Washington in early August. [See the expanded coverage of the conference in the sidebar article and commentaries, “xxx” on page X.]
The facilitator of one workshop, Patrick Hendry of Florida, said that while “we always talk about how the system co-opts us … the new paradigm is that peers are now co-opting the system.”
Peer support workers are “the fulcrum for change in that environment,” and now professionals who themselves may have psychiatric diagnoses are using their own experiences as tools to support their clients, he said.
Co-facilitator Kelly Davis echoed Puffer’s comments: “As we’re afraid of being co-opted, we have to remember that most people are still not able” to access peer support. Being paid “based on the value we add” to people’s recovery is important, she said.
But there are road blocks to integration, Davis said, including a lack of understanding of what peer support specialist are by consumers, payers and other clinicians, and the lack of private insurance reimbursement.
That contributes to the push for expanded certification requirements and private billing, which adds to the problem, said one workshop participant.
“It forces [you] into the medical model. You have to have a diagnosis. You have to have a billing code. … Is it really peer support? Or is it just people with lived experience doing the same old thing?”
The national conference discussions demonstrated a concern that Wales identified: that “the implementation of peer certification could also create a schism” within the peer workforce itself. “It leads to a stratification of peers or creates a kind of peer hierarchy.”
The Workforce Coalition
Vermont’s peer workforce has a central clearinghouse for mutual support, the Wellness Workforce Coalition, administered by the Vermont Center for Independent Living and funded by the state.
Ericka Reil, the outgoing director, said members of the coalition include a mix of those who work for peer-run organizations, community mental health agencies, recovery centers and NAMI-VT support groups – “everybody that does some kind of peer support.”
She said she has a tough time with the certification issue because she believes there needs to be some sort of training in models such as Intentional Peer Support and Wellness Action Recovery Plans, but not formal certification.
“Life is really your school,” Reil said, yet supporting others “can be triggering for yourself. … It’s all a part of self-care, a matter of knowing what you can handle.”
She said formal certification could help in getting insurance reimbursement, “but at what cost?” citing demands of paperwork and reporting requirements.
Reil said she thinks harm can result because agencies require that staff report suicidality and their staff come under the state’s abuse reporting law. She said peer workers tell her they have to report things when “they know it is going to be more of a crisis as a result” because they’ve lived with similar experiences.
Many of them “sometimes feel a little segregated” because they often are not considered part of the clinical staff and “sometimes they’re treated as just another client,” Reil said.
But Reil said she has found “surprisingly good feedback” when she works with executive directors of such agencies, who ask her how they can better support their peer workers.
Some have said to her, “Please tell my peer workers to talk with me – I want to know.”
That’s the experience that Puffer describes in her relationship with leadership at HCRS.
They’ve told her, “‘You tell us what peer support means.’ They’ve allowed us to build our own program,” she said.
She also said she doesn’t feel being a part of the agency is a barrier to working for change in the system.
“I think that it does happen a lot. Our role as change agents has been embraced as part of our role,” she said. HCRS administrators “ask for critical feedback and advocacy.”
While there are “definitely inherent limitations to being in the system,” Puffer said, concerns about policies for reporting suicidal thoughts or abuse can be addressed by “being upfront about the limitations” to make sure the person feels safe in the relationship.
Bousquet said that he and his team members “struggle with the inequality within the system” in terms of how they are perceived by other Howard Center staff.
He said he tries to avoid “getting caught in the web of always trying to prove your worth in the agency.” Getting more acceptance and being more integrated “is something to shoot for in the agency. … We don’t want to [be] separatist.”
Bousquet said he also feels that being within the system, there is “definitely not as much freedom to explore with a person” in a mutual relationship. “You have to write a note. It’s going into the computer.”
But he said there is a real value as well because he sees the broader scope of a person’s care plan within the agency, and the peer staff can advocate with case managers on behalf of clients.
Another big plus: “We’re here. We’re in the Howard Center.”
Bousquet said he opposes the idea of certification. “Why do we have to be approved to help somebody out?”
Having his program restricted to Medicaid clients drives home to him that it may be inevitable in order to get reimbursement, he said.
He can live with the idea, “as long as we’re still doing what we need to do to maintain relationships,” he said. “That’s where the line has to be drawn.”
At Rutland Regional Medical Center, peer support staff in two newly created positions pointed to their ability to spend time listening to patients.
Akbar Abidi said the value he brings as a peer specialist is that a person may be more comfortable talking with someone if they think, “‘Oh, this person can relate.’”
Abidi said he lets patients know that he isn’t interested in focusing on what brought them to the hospital or what their diagnosis is. “It’s whatever you want to talk about.”
[See full interview with peer staff about the new roles at Rutland Regional on page X.]
The money issue struck home at Northeastern Regional Medical Center in St. Johnsbury this summer when the Center for Medicare and Medicaid Services – which provides oversight and controls all federal funding – found the hospital in violation of adequate staffing requirements because it uses peer support staff with emergency room patients waiting for admission.
According to Paul Bengtson, the chief executive of the hospital and a board member at NEKHS, CMS found the hospital in violation because “you’re allowing non-certified, non-licensed people who can’t document in the medical record.”
“They are not saying that we cannot still call the peer support person,” Bengtson said, but the hospital must now hire additional staff to meet CMS standards because peer support cannot be counted as part of the staffing.
The peer support workers are employed by Northeast Kingdom Human Services, which has operated a program known as “the cadre” for many years, made up both of regular agency staff and peer support staff who are paid to be on call to provide support in various crises, including at the hospital.
Risks in the System
Many peer support workers see bigger obstacles than funding when it comes to working within the system.
Toohey said that peer support staff who work within community agencies are “beholden to a bigger system” and people within that system are being told, “This is the treatment for you.”
She has been on both sides, having previously worked for a designated agency where “my behavior was based on being within that system” and “not being able to make waves in the way I should have,” she said.
“I really view the work we do as a social justice issue,” she said, and that can’t happen within a “big system that’s all about treatment modalities.”
Toohey said that within peer-run agencies, “you don’t have to be scared about sharing,” while at a designated agency a peer support worker has to be a “neutral non-entity within a relationship.”
She said she recognizes that even within a peer-run agency, there is a difference between herself as its executive director and the peers who are a part of the Another Way community, but “on a human level there is mutuality.”
Toohey said that she sees reporting policies within agencies as having very negative consequences.
“I’ve seen immense harm by the ‘we’re keeping you safe’ perspective,” she said.
As someone who’s dealt with suicidality since childhood, she knows how much a person already feels out of control, and taking more control away adds harm, she said.
It is “extremely important to be able to talk about it,” but fear of being turned in leaves people “not being able to have anyone to turn to.”
Aimee Powers, also from Another Way, said she does not think there is a right or wrong setting for peer services because “it all depends on the person interacting.”
“I feel that it’s good to have a presence in hospitals or in designated agencies,” she said.
She said she is “wary of other agencies,” however, and “whether they really get the gist of it.”
Those who come to Another Way are members of its community, not clients, she said.
Powers said she felt very dehumanized when she was a client at a mental health agency. She said she doesn’t think of the people she supports as clients and was upset recently when she heard peer support staff working at an agency refer to having clients.
“Either you are a professional clinician and you have your clients or you’re a peer and you’re supporting your peer.
“That’s one of my fears, that these peer folks are going to be too clinical and too biased and not giving folks enough true support to make their own informed choice about what’s best for them.”
For Wales, that is the crux of the “medical model” pressures she works under at Second Spring, which is run by a combination of three designated agencies.
She has concerns about the high use of medication there but is not permitted to endorse a non-medication alternative “as this would directly contradict the ‘wisdom’ of our clinicians. Instead, I try to be as empathetic as possible and suggest that they advocate for themselves when they talk to their psychiatrist.”
If a resident is experiencing an altered state of consciousness, staff, including Wales, “are instructed to employ ‘reality checks’ with the person so as not to ‘feed in to their delusions’” instead of “opening up a wider conversation that comes from a place of curiosity and non-judgement.”
She is required to enter notes using a model that “only takes into account the perspective of the staff member … and infers that this is the truth for that particular resident.”
Despite her reservations, though, Wales sees certification as a potential tool for improving skills of communication, establishing boundaries and caring for one’s own well-being.
Peer support staff hold positions at several alternatives in Vermont that are fully peer-run.
Besides Another Way, they include Alyssum, a crisis diversion residence, and Vermont Psychiatric Survivors, the mutual support and civil rights organization that also publishes Counterpoint.
Others are a blend, such as the cadre program, which is led by peer support workers but is within Northeast Kingdom Human Services, and the peer-run respite beds within Washington County Mental Health Services.
Safe Haven, a transitional residence in Randolph, began 20 years ago as a three-way initiative among the Clara Martin Center, NAMI-VT and Vermont Psychiatric Survivors. VPS hired the all-peer support staff, and Clara Martin provided access to clinicians.
Several years ago, during a leadership transition at VPS, Safe Haven staffing was turned over to Clara Martin. The agency says it continues to have all staff at the residence be persons with lived experience.
None of those models have validity as being peer-run to Callahan, who does peer support work at Another Way.
He still thinks back to the day, more than two decades ago, that the members of Another Way voted to hire a member to function as the director. He said he feels the decision to pay someone to be in charge changed the peer relationship with that person.
“We lost a lot that day,” he said. “When you have a community that’s purely peer-run … they [have] a real stake in it.”
Now Another Way “is not run by the people who go there,” he said. “It doesn’t really exist anymore” as the entity it was when its members voted on every decision as a grassroots community group.
Despite his regrets, Callahan said that Another Way at least has the foundation of having been started by peers, while community mental health agencies “are just medical institutions [where] a doctor tells you what to do” and peer support staff “have to conform to the rules of the institution.”
They are “doing the best they can, but I think they’re limited by the institution,” he said.
Peer support itself is “becoming a profession and losing its credibility,” Callahan said. It is “very provider-ish” and “more about controlling people” than giving support.
Callahan said that as soon as a person has a job description, they are no longer on an equal plane with their peers. That concern was echoed by a participant at Alternatives, who said that because such a person “has a real job and a real paycheck” the relationship can no longer be considered mutual.
The very language of training and certification, Callahan said – “peer-support competent” – is part of what is going to “kill peer support.”
“If they have a certificate and the person [they’re] trying to support doesn’t have a certificate,” it is no longer a relationship based on mutuality, Callahan said.
He walked out of a recent training presentation that he said was “laying all these things down on paper on what to say and what not to say. … There was no language of love and caring.”
“Becoming like a robot is not going to help people to interact on a level plane.”